Just a quick update.

The outpouring of love and support I got both on here and on Facebook, as well as at church in regards to my last post has been truly encouraging. A big thank you to everyone who is stepping forward and helping out.

As an update. I have been on anti-depressants, as a treatment for fibromyalgia, for about a week and a half. Kevin has noticed a big difference in my ability to do things and said he's heard less comments about pain and stiffness. I'm still dealing with a lot. And seems like I'm dealing with more cramps. Particularly in my feet and knees. But overall I do think I'm fairing a bit better.

Over the holiday weekend Kevin and I worked in the front yard and got most of the berry bramble chopped down. We have a mountain of bramble in the middle of the yard now. There is still much yard-work that needs to be done, but that was a huge part of it all. I felt very accomplished because I worked along side Kevin for much of the time!

On an almost completely different topic, the following link takes you to a video from AccuWeather that debunks global warming (in California wildfires.) and actually shows that we're in a trend of cooling for the next couple decades. I know I've changed this blog to be about illness and faith, but this is one topic that still seems relevant to me here since weather greatly effects my symptoms. Winter months are often rough for me. And if this does play out, as Farmers Almanac also claims, it'll mean that I need to plan ahead better for the foreseeable future as to how to stay warm, and what I need to do to manage pain.

I think that's about it. I am looking at the info about global cooling and more snowy winters here in the PNW as a cautionary warning but not something I'll be really alarmed about. I have hope that this new diagnosis and new treatment will help me cope better this winter than in the last couple winters. Even still, I think I may need to invest in an electric blanket this winter! ;0)

I have rubber bands around my knees & my feet still are lead balloons. But I'm thankful for the HOPE I have in Christ.

It really does feel as though I have rubber bands around my knees & my feet are lead filled balloons. This stifling heat-wave here in the Pacific Northwest is doing nothing to help my already swollen limbs full of edema. While these things certainly are trying they do not consume me, for I'm thankful because of the HOPE I have in Christ.

Job 2:10b says: Shall we receive good from God, & shall we not receive evil?" In all this Job did not sin with his lips.

Job was enduring many trials, tests, & afflictions & yet he stood true to his faith knowing that the God who created this world with both good & bad would ultimately still be worthy of praise no matter what it was that Job had to live through. Through the book of Job we see him question why, but not rebuke God. In the end of the book we see that God richly rewarded Job, & that in the end Job's faith in God grew, as did his heart of thankfulness to God.

It's fine & good to focus on having a thankful heart. But if you are hurting or dealing with a burden it does no good to ignore it forcing yourself to only think thankful thoughts. Keeping quite can prevent others from knowing what to pray about with you or keeping them from doing God's will by helping to meet your needs.

In Matt. 25:43-45 Jesus says: 'I was a stranger & you did not welcome me, naked & you did not clothe me, sick & in prison & you did not visit me.' Then they also will answer, saying, 'Lord, when did we see you hungry or thirsty or a stranger or naked or sick or in prison, & did not minister to you?' Then he will answer them, saying, 'Truly, I say to you, as you did not do it to one of the least of these, you did not do it to me.'

If we tell people to not speak up how can we do as scripture says and bare each-others burdens? (Galatians 6:1-3)

I find GREAT COMFORT & HOPE when reading the promises in scripture. I will be honest and open and say when I am dealing with a great deal of discomfort or other burdens because I know I have a great circle of prayer warriors and lending hands around me

2 Corinthians 4:7-18
But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.

Since we have the same spirit of faith according to what has been written, "I believed, and so I spoke," we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

When others don't understand invisible illness.

One of the most frustrating things about having an invisible illness is when others look at you and think you should be completely capable because you look fine. Some days, living with RA, that can be completely true and I can do a lot. But most days I'm happy to eat three meals, spend some time on the computer and go back to bed. What can I say, it's not an easy thing being ill, and the lack of understanding sometimes really makes life trying.

Recently I've started using the power carts when I go to the grocery store. It's been a good thing, but I still feel eyes on me as people see me walk in and then sit down on these cars. Having my cane at my side still doesn't seem to deter the stares. I remember when I was really little I was watching someone using their wheelchair with a basket attachment in the store and my mom saw me watching and told me not to stare because I could hurt their feelings. I was fascinated with the functionality of the basket on their chair and didn't get the idea of hurting their feelings then, but I so get it now that I deal with it myself.

One of my matrons of honor (I had two) at my wedding has arthritis as well. She was one of the youth leaders when I was a youth in the church we used to attend. As a group we'd go to concerts and amusement parks and I always loved hanging out with her, but would prod her to come along with me to various places in the park, to just walk with me. Sometimes she was a sport and other times she'd wrap on her knees and tell me something along the lines of "Arthritis, need rest" at least that's all I'd remember. And now that I deal with it myself I feel the need to apologize to her for pushing her as much as I did. Yes, it's good to keep moving, but I'm sure I've made her feel bad about not being able to keep up with a kid (when I was a teen). If I had the understanding I have now, I would have just sat along side her and enjoyed the wonderful conversations we always have when we're together. Dear Liz, I miss you & I'm sorry I didn't just sit with you more.

On to another aspect of this topic. There needs to be real understanding awareness raised around society today. I think one of the biggest ignorance is when people assume that someone is lazy when they use a walker, cane, wheelchair, etc. They think that as long as all limbs are there and useable that any aid is just laziness. It's sad, if only they could see what life feels like with needing these things, maybe they'd think twice before making such a false and hurtful assumption. This issue happened to a teen who recently went to a drive up restaurant and was turned away because she used the handicapped spot. She rightfully has a placard and special drivers license, and yet they turned her away. You can read about it here. It's just a classic example of someone thinking "she looks young and fit, so they must be lazy and lying." And yet this young woman had every right to be there. I don't think it's an issue to boycott over, which is why I'm leaving the link to mention where this happened. I think the issue is with the employees who are ignorant. I do however think they have a case to make to corporate that those employees need to have some training or disciplinary action done. It's just sad that in a day and age where we're supposed to be so aware and accepting of so many things that when someone can prove their disability they are still denied the proper service they deserve.

You're lying by not complaining!

What is wrong with you!? No, really? Are you wearing a happy face mask, but inside feeling like no one could care two cents about you? Who's fault is it really if you pretend for others that everything is OK when you're hurting so deep and wishing someone would listen? If you don't open up & speak up you can't fairly expect anyone to know what you are dealing with. Unless you happen to know of some legitimate mind readers or something (I jest.)

My house is a mess. I'm not upset about this (terribly) and it's not going to hurt me. I'm not telling anyone to do anything about it. And I'm not making excuses for myself by saying this. It is however at the forefront of my thinking. I'm a housewife with chronic illness. Most days I see everything around me that needs to be done and plan things out in my head, but actually making a dent in the list? Nope, and if I do, I pay for it the next day. This is the reality of my life. If you don't know me, you can just stop reading now. BUT chances are you do know someone with chronic illness so maybe it's worth it for you to continuing reading on.

I want to know where the idea that Christians aren't to complain comes from? I will whole heartedly agree that the manner in which it is said, and the heart of the matter is of high importance, but where does the idea of this false happy mask fit with a truthful heart? How then, are we to know what each-others burdens are to bear them for each-other? I can stay holed away in my home for weeks on end, could be playing guitar hero all day ignoring the world (sinful defiance), or I could be laying in bed in pain (needy). How would anyone know unless they ask? And how can I be truthful unless I honestly say when I'm struggling?

My wonderful husband set up my foot spa for me today. It wasn't a matter of seeking luxury, but a matter of getting the cramp in my foot to stop long enough for me to stand at least a little bit. We struggled to find the salt and he carried the water to the couch, bringing me a towel and flip flops to wear afterwards too. Then when I was done he took the spa to the bath to dump it out. Do you care anything about this? Well, maybe it sounds like complaining (and lots of needless details) to some, or maybe to others it shows just how sweet my dear husband is, and how grateful I am for the little ways he loves & cares for me. My feet still hurt. But my heart is full with love because of the compassion my husband shows me. Living out our marriage vows to love in sickness and in health is something he has shown great integrity about. I am so blessed by this continually. How do you know this? Because I have a cramp in my foot.

At church I was TIRED! I got maybe 4 hours of sleep. I wish it was for something fun like reading too late, or playing video games or watching movies. But it was from washing dishes and running errands, and then tossing and turning all night from pain. Wishing I could sleep, knowing that in the morning I'd be tired. Why is this important? Because when I get this tired I know I'm not as good of a friend. I know I'm not as interactive, social, or listening. You could tell me wonderful stories, but I won't remember simply because the sleep debt robs me of brain cells as my body is in standby mode to power down. And that's what happened today. I sat with wonderful friends, didn't really say much of anything, and then went home. I know we talked, but I can't remember much. And I feel so bad for that. These people deserve better than that. If I could change something about my sleep issues I would in a heart beat, and all because I want to be a better friend. I don't want people to read that and think my point is about the sleep issue, but about why I might not recall something that a good friend would, and I could be that person for them. My hope would be that by sharing this I can promote understanding.

I have this huge need and drive to be truthful, honest, and straightforward. If I sense someone asking me how I'm doing and they look a little concerned I tend to tell them. Maybe I shouldn't. But isn't omission in itself a type of lie? If I'm not fine, but put on a happy face and not let anyone else think other wise, am I not in-fact lying? Which is worse? To be seen as needy or to commit a sin of false testimony?

What does this mean to others? I DO want to know how you are when life sucks, don't hide it. Maybe there are ways I CAN help, or know someone who can! And I bet with talking it out we can come up with the blessings in it if we pray and dig. When you have something sad, don't feel like there is no one you can talk to. All that will do is make matters worse.

The reason I share on here what I do is in hopes that others will be made aware of what life is like dealing with this chronic illness stuff. In some ways I sometimes still have to teach myself that life is different. I had energy and did all sorts of stuff yesterday, and now everything is all out of whack again today. If I'd just remember to pace myself I wouldn't feel like I have the flu right now. And I'm not sick with anything contagious, just that my disease activity is, well, active. I over did it. My body is inflamed, and it's letting me know in the way my body likes to communicate the matter, pain. This is hard to describe because it sounds like weak muscles or the first couple days after a new workout program. The problem is I do exercise, always have, but the way a disease like RA works is sometimes it robs me of strength and other days I feel fine and capable. One day a simple task is no problem, the next day putting on shoes feels like an olympic event. As I live through it, I wish sometimes that I had learned from someone what life is like dealing with all this before hand. Before I had to start taking stock of what all I put my energies to. So I wouldn't feel so blindsided by some of it now that I'm dealing with it. Not that I'd ever wish chronic illness on anyone, but if it is something that must enter the life of someone I know, I'd hate for them to feel like they had no idea what any of this is like. And in some ways a lot is stuff that only someone who lives it can know.

It's kind of like this. I've never given birth, so I can't assume to know what carrying a child and giving birth is like. But I've heard so many stories and seen so many pregnant ladies over the course of my life. If I were to someday become pregnant I think there are some things I'd know ahead of time as a result. And I'd be grateful to all the ladies before me who taught me what it was like dealing with the months they were pregnant. And the things they went through bringing their children into the world. But had no one told me anything, and I did give birth, I think it'd be safe to say I'd probably be a bit dismayed that no one ever told me anything about what it was like. I'm sure there would be things I'd be going through that would make me think, "Someone should tell others what this is like!" And that's all the reason I mention things sometimes. Honesty and education.

Here's hoping my fellow chronic illness friends have a pain free day, and if they can't, that they can still see some reason for hope beyond it.

Arthritis Campaign- Tulsa OK

I have RA, AS, and OA.... I've had these for a few years already and I'm not even 30 yet. If I ever hear another person tell me I'm too young to have arthritis it'll be too soon!

Weird dream!

OK, YES, it is 3:00 PM and I'm blogging about a dream I JUST woke up from... I've been dealing with very bad sleep lately due to depression and arthritis pain. So I'll take all the sleep I can get, when I can get it.

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In my dream I just had I was having a cooking party. Everyone was bringing their own containers, recipes, and ingredients. We were all supposed to bring food enough to make a 12 serving dish. Each person/group/couple was assigned a different part of the menu and everyone came from all over the state representing their favorite recipes.

I had posted this party on a site like Craig's list or Yahoo, thinking I wouldn't get anyone to come, but giving it a try anyway. Turns out I had quite the crowd! there were several couples, a few families, and several singles. All brought amazing meal plans, amazing ingredients, got along well with everyone else, had fun sharing together, and I got on my way making my own food preparations. Before I was finished I noticed everyone else had already finished and were now on their way to splitting up their dishes to share with everyone. I felt under pressure to get mine done. I was baking cornbread and making a corn salsa. The salsa I could rush, but not the baking. So I was growing restless and impatient. I started to try and mingle with the people who were now gearing up to leave. I tried handing out communication cards asking people to fill them out to let me know if they wanted to do this again, many did so I bought myself a little time. I saw one woman sitting on the couch trying to squeeze the wrong sized lid on a piece of Tupperware she had brought. I explained to her as I gave her one of my own right fitting lids that she was putting a lid for a 3 cup container on a 4 cup container, that I used to sell Tupperware so I have extra and would just trade so her food would get home fine. She seemed to appreciate that. As I was getting the lid from the kitchen I noticed that several of the ladies actually were still inside and that it was just the guys that had gone out to the vehicles, they were putting the food away to make more room, and to take care of that while the ladies cleaned up. I started sheepishly saying they didn't need to do that. I'd get to it after the party. They start speaking up about how they had to keep washing everything as soon as they got here because there was a sink full of dirty dishes and nothing clean for them to use. I was puzzled because in the dream everything was laid out ready to go (in real life I never could do this party in my kitchen because I do regularly have a sink full of dishes.) And then some of the older ladies start speaking up in detest about how awfully dirty some of them are & were. I start stammering. I'm trying to explain that I really thought I was healthy enough to host this party, and had cleaned before everyone came. As I'm trying to explain and stammer I'm feeling every part of my body that deals with arthritis get really painfully arthritic. I grab for the back of the couch to hold myself up as I feel both attacked by my guests I've never met before, as well as my own body and arthritis. One of the older gentlemen speaks up as he's standing with his cane telling me that I'm too young to have arthritis, and starts chewing me out for being lazy and still expecting to be a hostess. I'm crushed. I sit down on the dining-room floor and cry, in pain, wishing he were true. Knowing that is what many, even experienced people think of me. Everyone is out at their cars loading up the last bits, aside from one lady who is sitting in the kitchen on my barstool by my stove. I think at this point she's the only one left who knows anything about my cornbread. She's sitting there peacefully taking in the smell and happily anticipating taking it out for me as I'm sitting there on the dinning-room floor (just a side note, sitting on the floor directly is excruciatingly painful for me, so how I was doing this in my dream I don't know, but I was in pain in the dream, so maybe I felt too emotionally crushed to care.) The timer for the bread stops and I come out of my emotional fog and get up to help the lady pull it out of the oven and spilt it up into 6 different portions into sheets of aluminum foil. As I'm watching her and seeing that she's gracefully taking care of it and I'm not really needed right here I start looking around to see the various communication cards thrown around. Amazingly and happily filled out with people who loved the drive out to my place, loved the menu idea, and hoped to join me for this again. Most only put an e-mail address, but I was fine with the positive remarks. As I was picking up the cards I noticed that someone had left a Christmas reindeer antlers headband on the couch and I remembered that someone's dog was wearing them as people joked around and made merry while they waited for things to cook. I grabbed the headband and asked the lady if that was her dog's and she says no, but she'll take it to them. She's walking towards me at this point and has a bundle of the wrapped cornbread in her arms. Somehow without loosing the balance of holding them all she grabbed the headband from me and walked outside to everyone else. She gracefully distributes the bread, and puts the headband on the dog again. Everyone laughs. The owner thanked her saying he "though he lost it somewhere in her (my) mess!" Graceful lady pointed to me and said "She found it." and the man waved to me sheepishly, but thankfully. A couple of the ladies who've been mingling outside come back towards me to tell me in person just how much they loved the party, the drive out to my place, and that they'd hope I'd host another next month. I said "...sure, and I'll try to be better prepared then." They didn't care. They just wanted the experience again. One lady said "we all took care of most of it anyway." So I felt a little better about the events, but I was leaning hard on my cane as I was watching people drive off and waiting to go back inside and collapse and cry a bit more. As there was one car left, a tall skinny man in worn out clothes said it really was a good party and not to dwell on what this mean old man said. He handed me a stack of pictures that showed that most of these people went to the same church a ways down in the state, and he said I could keep the pictures with the communication cards. Then he asked me where the best place to get liquor was around here. Kevin asked "store or bar". The man said "bar" and we said we didn't know, but that the one just in town certainly seems popular. He started his motorcycle and drove off towards town. His portion of food expertly tucked into a cooler strapped to the back of his bike. I stood on the lawn looking through the photos. Some were Christmas photo cards of the of couple families. Several were of the graceful lady standing by her church's organ with different quilted tapestries behind her on the wall in different shots. It made me think she sewed all the different ones as gifts to her church for the different times of the year. I thought even more highly of her on that, and saw her as even more nurturing, patient, and graceful. I saw a few of just the guys shoveling down plates of food around a long white plastic folding table. Completely unaware of their women standing behind them watching on. I saw another where the mean older man was standing in the middle of some of the guys and they were all around him in a circle and he was in the middle of the shot wagging his finger at the camera. And I saw one of the other man with his dog and the silly headband on it. I tucked the cards and photos into my pocket with this new understanding that most everyone there already knew each other, and yet they all treated me in such different ways. I thought about how I made a new friend in the graceful lady and was thankful she was apart of the group, and hoped I could figure out which card went with her. I came back inside to see that the house smelled amazingly like a wonderful banquet. The table was set and food on it hot. Not a dish in the sink or on the stove that needed tending to, and the love of my life sitting at the table ready to say a prayer over the meal and relax over food with me. I sat to eat just after grabbing the medications I need to have with food. Relieved it all was over, but still shook up by how differently people from the same group treated me.

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I don't know why the start and end were so peaceful and the middle so insulting and chaotic. I think maybe my pain that I was feeling in my sleep was messing with what would have normally been a nice dream otherwise. And I know that having such a party without a hitch would be a dream, something I could never pull off in real life because of the state my kitchen always is in due to my arthritis slowing me down all the time.

I know I am deeply wounded any time someone mentions to me that I'm "too young to have arthritis" I can agree that I myself feel to young to have osteoarthritis, but rheumatoid arthritis, and ankylosing spondylitis are generally diseases that effect people in their early-middle adult years. Knowing this doesn't do much to shield my heart sometimes though. Especially when it's someone who one would imagine that years has made them wiser.

So to my readers. After reading this (if you could follow all of it) do you think of any further analysis? Do any of you like to dabble in dream interpretation? I'd really love to know if anyone else has any further insight to this dream.

I did wake up feeling awful. I'm tried to eat a plate of nachos I microwaved just to get something inside me, but it was not appealing. I'm now towards drinking a glass of milk to not feel hungry, but I had done that before falling asleep, & I know I need to eat something nutritious... I just feel so worn out, and that's after having slept all day.

Does anyone know of any good dream interpretation books?

The never ending pain in the back.

I'm still on the fence about switching to a different rheumatology clinic. I went to the one I've been going to on Friday, the nurse practitioner ordered a ton of lab work as well as another MRI, this time on my lower back.

The lab work came back saying that I am not HLA-B27 +, but that genetic marker only pertains to 90% of caucasians with A.S., and I' not 100% caucasian anyway. So it's information, but doesn't really tell us anything. For African American's that genetic marker is only present in about half of the patients with A.S. so there are other genes that contribute to this that just are not known of yet.

My inflammation present in my blood was slightly elevated (as always) and the labs also revealed that I am dangerously low in Vitamin D. I'm to restart taking those supplements as well as now having a prescription dose to take once a week. I need to greatly increase my milk consumption as I know I do best when I drink more milk. This explains a great deal as to why I've gotten every little (& big) cold and flu that's gone around this winter.

I don't know the results of my MRI yet, but will see the nurse in two weeks to go over them. I hate waiting.

The MRI appointment was very frustrating. The technician had no bedside manners. When she asked what my ailment was that brought me in she seemed like she really didn't care what my answer was. And when I replied Rheumatoid arthritis, ankylosing spondylitis she replied with "You're awfully young to have that." To which I just didn't reply anything to her, other than "Well it hits in my family pretty early" I mean, how am I supposed to respond to that? Keep in mind RA effects women in the prime of their lives. I'm almost 30 and this is exactly the age most women with RA start to show symptoms. I've being medically treated for this for the last 3 years, I've got loads of lab work and improvement from medication to back this up, and she wants to stand in front of me and tell me I'm too young? What the heck, that's no comfort. And what does she know anyway, she's a radiology technician, not a rheumatologist!

So the next thing is that she has me get on the table to go into the machine, and she starts explaining to me about this vice looking attachment that is part of the cameras for the MRI machine, and how I'll need to lay on it too. So I give it a shot, trusting her, but thinking - "I'm doing this for my lower back, not my upper spine - this doesn't quite make sense. Anyway, so she tries putting me in the machine and asks if I'm doing OK, I had mentioned at the start that I can sometimes feel claustrophobic, but that I've done OK with getting an MRI scan before. As I'm in there with this vice on my head I can't breath at all. So I let her know that. She curtly asked me after she got me out if it was claustrophobia or something else. I tried explaining to her that the device around my head was pushing my shoulders to push my arms up over my chest when inside and that I couldn't breath from that. To which she replied "I'll have to talk to the radiologist." And she left me laying there waiting. When she came back she said I could do one of two things, have an open MRI that I'd have to reschedule for, or go ahead and try it here without the camera. As if she's responding to it still being a claustrophobia thing. So I said lets give it a try here without the camera and then when I went in I was fine. My arms were able to be down by my side and I could breath normal in there.

While I was in the machine I kept expecting to get updates on how much longer things where going to be. I was in the same machine I was a year ago so I recalling how the other tech was then. That gal kept telling me every 10-15 minutes a time update, which made it a lot easier to handle. I brought my own CD with me because last time I chose a CD from their list and it was a bad idea, the music started to make me freak out. My dear sweet cousin Tracy sent me a couple CD's as a surprise and they came the day before. So I was looking at the total play time and thought this would be perfect. Music I know I'd want to listen to, as well as it being a little bit longer than the estimated time I was told to be in the machine. As I got to the last song she called into me over the speaker saying that the radiologist wanted to do to more scans before I came out, so this all was going to be an additional 20 minutes longer. I said OK thinking the CD would start again from the beginning but it didn't. So between the last couple scans I squeezed my communication ball to speak up and let them know the music stopped. Nothing. So I figured they just wanted to keep going and didn't bother speaking up another time, but it kind of bugged me. I ended up spending the last 15 minutes in the machine counting minutes in my head.

Then when she came back in to get me out, she didn't say a thing. As I was trying to get back up off the table she says, "You can get up now, you don't need to keep laying there." What the heck, I'm struggling to get off, my arms are flailing as I'm trying to shift my weight and counteract the stiffness from laying there for over an hour. I said "I'm trying..." and she turned around to watch but didn't offer any help. Oh, and I should probably mention I was using my cane and had my cane with me. It just was really frustrating all around. At least it's done, now I can find out what my nurse thinks in a few weeks. I pray the scans are informative.

This new nurse is pretty good. She gave me the results of my last MRI which I had only been given a summery of. I'm glad she did too because now I can make copies and carry it to my other specialists as I need to see an endocrinologist and last years MRI showed my ovarian cysts as well as showing that my right ovary is enlarged. I only knew it mentioned my cysts, but not that it said how many were visible, the size of them, or that I was in-fact dealing with an enlarged ovary. I wonder if this recent scan will give more information along those lines. I'm certain my new endocrinologist will want to know these details of my PCOS.

Anyway, so that is my frustrating ordeal with the MRI scan I had done this week. I'm glad I don't need these all the time. I'm glad too for the times when I do get medical professionals who are courteous and kind. But I've got to say that I was so frustrated by the whole ordeal this last time that when I got home I had such a headache I just laid down with a cold towel on my head and cried, & I was thinking about how ridiculous it was for me to be frustrated because I'm the patient, I should be helped, but whatever, at least it's over with. I've avoided writing about it because I don't want to be upset by it. But I do think it needs to be recorded that how a patient is treated is a big deal and she blew it. Especially for those of us with chronic illness. We have to go to so many appointments and have so many procedures done, so when someone is rude it doesn't just feel bad, but it says something about our illness(s) and adds to the stress of having a disease or ailment.

Maddie has hyperthyroidism.

Our poor cat Maddie has had a rough week. The last several months she's been loosing weight and sleeping more even with still eating and drinking and using the litter-box fine.

Friday she vomited white liquid and I knew something really wasn't right. Kevin bought a box of canned food from Costco and we've been feeding her that, which seems to agree with her stomach better. She did OK during the weekend but on Monday couldn't keep anything down, and her breath and puke smelled really bad.

Monday was very stressful for both Maddie and I because while she was sick the power and internet were out, and the first time she puked she got it all over herself so I had to give her a bath in the sink, in a dark bathroom. The picture is of her all toweled up after her bath. You can tell she's unhappy, but trusting I'm doing right by her. The second time she puked, she was using her whole body so hard to do it that she choked on it and stopped breathing for a few seconds. I had to grab her and massage her to breathe, it was like the force knocked the wind out of her. I think that's what freaked me out the most and told me this wasn't normal cat regurgitation of hair-balls, but that she was sick and needed the vet.

Monday started out bad for me, with the internet going down, followed an hour or so later with the power going out too. I still don't know why these things happened, but the internet was down most of the day, and the power was out for several hours. We have VOIP for our home phone, so with both being down (heck even when it's just one or the other) I wasn't able to use the home phone. I tried several times to text and call Kevin, but his phone was off so I was growing more frustrated not knowing why I hadn't heard back from him. I finally got so upset after her second round of major puking that I called his number at work to speak to him. He was surprised as he didn't know his phone was off, and agreed that Maddie needed to see the vet. So I immediately called and took her in an hour later.

I took her to the vet and we had several tests of lab work done to find out what's going on. So far the diagnosis is that she has hyperthyroidism. She had a fever while we were there, and was badly dehydrated, so she's on antibiotics now, and was given a large injection of fluids. It seemed they doubled her weight when we were done there! She's perked up some with the fluids and antibiotics, but still needs to be put on medications for her hyperthyroidism. We're trying to figure out how we can pay for her now extra expenses as she'll need these meds for the rest of her life.

She knows I'm taking care of her too. Normally she's pretty aloof, but lately has been following my every move. Mostly hoping I'll keep giving her more food, which she hasn't run out of, but feeling how she does she's concerned that she always have enough. She's currently eating a whole can all by herself everyday! As well as having all the kibble and water she wants available to her.

She's a good cat, and we don't want to give up on her. We want to give her the best life possible, as much as we can. She may be a grouchy girl, but she's ours, we love her, and she's very intelligent, and we respect that about her. We're hoping with these medications that she'll continue to improve and will have more time with us, she deserves that. She's our little girl, and we've had her all of our 9 years of marriage.

Siggy is being trying as he's not getting as much attention as he's used to. So he's doing many naughty things. We have our printer on the very top of the entertainment center so that it's out of the way, and while I was printing an invoice the other day I heard this loud clashing sound. I ran out of the office to the living-room to see what the heck happened and found Siggy on the top of the entertainment center about 6 feet above the ground, trying to steal the printer paper! After getting my picture I had to climb up and pull him down as he wasn't listening about getting down. I was very frustrated. Today he's been a bit better behaved. But I think that's just because we've been letting him in the bedroom while we sleep again, so he doesn't feel so neglected. But we can't do that all the time either. I hope that as she perks back up they will get back to playing together more again and that his behavior will improve.

Right now she's in her bed grooming herself and purring. She seems really content, and that makes me so happy. Since going to the vet she hasn't puked at all, which I know both her and I are very thankful for. Now that she's doing a bit better I need to get the steam cleaner out and clean all the spots in the carpet from Friday and Monday. I'm so thankful I have my own steam cleaner. The only problem for me is actually getting it done. My hips and back are causing me immense pain. And my legs are weak. Stress always adds to my daily arthritis pain & stiffness. Additionally the weather has been changing a lot again, and the barometric shifts really are murder on my joints. Even still I was able to ride my stationary bike for almost 4 miles this week. I think I need to take a break though so this doesn't turn into a major flare. I'm already dealing with a lot of pain while at rest. I have an appointment to see my nurse rheumatologist on the 6th and am trying to tough it out with just Tylenol alone as I've run out of meds before then. I'm using my cane a lot to get around, and really wishing I had already bought a walker as it would be a lot more useful right now. Tomorrow I'm just going to rest. It seems like that's working for Maddie, so maybe I'll have a chance now too.

Injections for arthritis.

No medication out there is free of side effects, and, unfortunately, no disease is free of side effects if left untreated. This is where my doctors and I made the choice that with how rapidly fast my symptoms were growing, that putting me on injections for my arthritis made sense.

I run risks by taking it, but the ability to move again, even if it's not full ability, is a marvelous reward. During the fall I had three months where I was going from one cold to another, and then another. I can't inject during these times because I run the risk of having pneumonia, or another type of bad infection. I have to take every precaution when I get cuts to avoid bad infections, and I have a special prescription for antibiotic ointment. So far the ointment has worked well, as does keeping the house stocked with oranges. The three month cold worried me, mostly because I couldn't inject though. While the colds were bothersome, they were just colds. The effects I was feeling from arthritis though were at times beyond bearable. About once a week I wasn't able to get out of bed, and spent much of the time walking with my cane. A few weeks ago I was able to inject again, and thankfully I haven't gotten any more colds. I had a small little infected sore above my ear, but just with some Bert's Bee's remedy, I've cleared that up and it's healing. I'm very thankful. I just got my second injection tonight, and looking back to a few weeks ago, I can definitely tell the difference. My back still wrenches up, and my hips still click, but I can move freer and my periods of sever inflammation are a lot less. Controlling the inflammation is key, because the inflammation is what does joint and tissue damage. I need to get it under control more because I've lost a lot of muscle strength from the inflammation eating away my muscles. But it's a balancing act because if I work too hard I can make the inflammation worse instead of better, that's what my physical therapist was telling me. R.A. is different then just working out a damaged area, it's an ongoing thing.

Today was the first time in a long time that going grocery shopping didn't totally wipe me out. I did pretty well! I was very pleased, especially considering how much of a task it was just a few weeks ago. I know it might not always be this way, but I'll take the benefit as long as I can.

Now my goal is to get more of the home in shape, to start pricing fencing, get some home maintenance things done and some other things to prepare for adoption. Fencing the property looks like it'll need to be top priority, safety measure from the state and all. I look forward to this being done, but I'm not sure just how soon it can happen yet.

I almost feel antsy, because of my ability to move better again. My strength and energy still is not like I was when I didn't have arthritis, but it's better than laying in bed wanting to will my body to move and not being able to. I'm anxious to get things done around the home. I feel like I'm ready for some Spring Cleaning, and it's only just the start of January. This is a very good thing. I need a head-start. I need to get stuff done while it's cold so that when it gets too hot to think straight I'll be able to sit and read a book and not feel so bad about things. 5 months, I might be able to do that, so long as I keep staying cold free and can continue to inject!

YAY SNOW!

We've finally gotten our first snow for the season. It started at 9 last night. Hasn't snowed much this morning though the clouds certainly look like they could dump more at any moment, and the temp is still low enough for snow and not rain!

Siggy loves snow just about as much as me, it seems. As soon as it started snowing he wanted to be taken outside. It was funny watching him eat snow flakes as they plopped from the sky. So excited, it was really cute. But because that was happening in the dark, I couldn't get a video of it. Maybe we'll get back out if it snows some more during daylight today.

Yesterday was a fair amount of rain before the snow, so it is a pretty wet pack right now. But with lots more snow on the horizon it should continue to get even prettier as time progresses. Maybe tomorrow I'll get some pictures taken before church.



The only down side about any weather system coming in and changing the weather so rapidly is that my arthritis goes super crazy. I was plastered into the bed all night and slept a somewhat restless 12 hours! The arthritis index is pinned at extreme for the next few days, and it certainly feels like that for me. Oh well, my cane is my friend, if only it were a walker, but I'll make do.

I'm just praising God for the beauty of the snow. I love how transformed everything is, from dirty and dry, to covered in white, this time of year, when it snows. It's so beautiful.

On to other topics. I'm thoroughly engaging in learning as much as I can about adoptions right now. We are more and more convinced that foster adopt looks like the route we want to go. Because adoption can be tricky with timing and placement, and with foster kids - emotions, we feel that while it's been good for us to have the adoption blog site, we'll be taking it down soon. Some posts will come here, and the things we can talk about will be posted here, but having a blog specifically, and only for our adoption story, isn't appropriate. If one wants to follow just adoption related posts they will be able to do so using the tags feature once I have things shifted over.

I've had some complaints about having my comments be registered users only. I'm not sure what to do right now, I need to keep my comment moderating secure, and it hasn't been fair to readers when commenters who do have a site registered somewhere post "anonymously" with just their name, this is meant to have commenter accountability. A lot of blogs function this way. What I may start to allow is a way to e-mail a comment in too, where I have the e-mail address, but it isn't visible in the post, and then allow comments that way. I've seen that on different blogging sites, but as of now, I haven't seen that feature available, readily, on blogger.

So, snow is pretty, arthritis is not, adoption stuff being studied, blog changes happening. Oh, and I'm blessed to have Kevin all to myself for the next 5 days as he's on vacation! While I may be in a lot of pain, life feels pretty good! Praise be to the good, one and true GOD!

Oh, and did I mention, YAY SNOW!

RA and PCOS

Doing a search for the two terms together I often find many message-board sites where women are trying to reach out with others to see just how previlent this combination is, and it is if you look at all the posts, but what I notice in all my searching is that there isn't much in the way of medical info about this.

* Both conditions are considered genetic.
* Both conditions have deep impacts on young women, in life changing ways.
* Both conditions are improved (BUT NOT CURED) by a low carb, high "good-fat" diet.
* Both conditions feed of of their own symptoms and often make treatment hard.
* Both have depression or dysthymia as a possible symptom.
* Both have increased fatigue as a frequent symptom.
* Symptoms of both diseases often leave the patient with feelings of loss, loneliness, and isolation. A strong sense of not being physically whole or well.

Because of these cross-overs, it's hard to think of one as completely separate from the other.

When I got my diagnosis of PCOS several years ago so much started to make sense. Almost all of my medical issues fell under one umbrella now, and the diagnosis gave way for treatment plans and medical understanding. I wasn't causing these things to myself, but my body was causing them to me. As a few forms of arthritis have crept up on me before I'm even in my 30's, I've had to wonder well, does this fit all together too? I mean I have various forms of arthritis on both sides of my family tree, so I've always been well aware that I'd develop some form of arthritis in my life, but never did I really think it'd turn out like this. So I search the net...

The following is probably the best article I've found to date trying to piece together things for those of us with both issues. It seems to me like this article just confirms what my symptoms and pain levels already tell me, that one issue feeds off of the other and presents itself sooner for those who are unfortunate enough to have both diseases in their family tree.

Thanksgiving for my burdens.

Today has been a very different Thanksgiving for us. It's the second time we've had Thanksgiving just the two of us. It's somber. But peaceful and nice. I made a big spread, Kevin praised me again for my cooking skills. I honestly don't know how I did it other than God saying "Now is a time to feast and give thanks!" My arthritis pain has been unbearable! And amazingly the only thing I burned was a tablespoon of butter as I was getting it melted to make apple crisp for dessert.

I still have a pretty nasty cold. I was amazed I was able to enjoy as much food as I did. As I sat eating with the love of my life, my hips and back were quickly making it such that I thought I wasn't going to make it through the whole meal. Amazingly I did. I sat and ate with my love, and talked and just enjoyed each other. It was really nice, aside from the pain. By the time I took my last bite I had to get up and start moving. I paced the kitchen, getting various things to pack up the bounty of leftovers. Someday I'll learn to make Thanksgiving dinner for two, but I've yet to figure out how to get the recipes right to do that, so I made way too much, at least I won't have to cook for the rest of the weekend!


Here was our menu:

For the meal:
Spiced apple cider Black Forrest ham with grated apple
Stuffing stuffed chicken breast
Cornbread stuffing with sauteed baby portabella mushrooms, celery, and onions
Cranberry jelly
A HUGE salad with every leafy green imaginable (OK, actually pretty much every veggie I could get in the store)
Baked mashed potatoes with garlic and bacon
Baked yams (with marshmallows, for Kevin)
Chicken gravy
Black olives

To drink:
Sparkling apple cider
Ice water

For dessert:
Traditional Creme Brulee
Apple Crisp



Quite a spread for just two people. And I'm thankful we were able to do that. We were among the crowds of people doing last minute meal shopping yesterday. We decided to do a Chicken breast instead of a turkey simply because it would have been way too much. I still bought a turkey however. It's in the deep freeze right now, so we can have it whenever. I bought the turkey even knowing we weren't going to have it today because there was a deal at the store; the ham, turkey, a sack of potatoes, and several other things, were all for a package deal at $20. I couldn't pass that up! So I have a whole turkey in the freezer! It feels silly, but it's good knowing I'm able to put food by after all this too.



And now to share what I've reflected on today while giving thanks:

I'm thankful for Kevin's job, that provides for us.
I'm thankful for health care, doctors, and modern medicine; all of which are helping me deal with arthritis at 29.
I'm thankful for the house that we have, and the home we keep for ourselves inside.
I'm thankful for my friends who pray for and encourage me.
I'm thankful For my church family, who is there for us so much, teaches us so much, and is sad for me on the Sunday's I'm too sick to make it to church or other events.
I'm grateful for the many gifts and blessings we've been given recently.
I enjoy the beautiful pictures I've both received and been in, nice memories to look at and reflect on.
I am blessed grateful and thankful that I'm able to be a housewife, and not needed to work outside the home; affording me the time I need to rest, and still get done the most critical things around home.
I'm thankful for real servants of Christ who help us with the upkeep of our home.
I'm thankful I have a cane, and soon a walker... these thing keep me moving!
I'm thankful for the days I don't need my cane or anything else.
I'm thankful for my cats, who remind me to rest, and love simply.
I'm thankful for the internet, and computers, and other various ways of keeping up to date and in touch with those I love.
I'm grateful for the simple life that we have.
I'm thankful for my husband, the love of my life. He is my constant help-mate, lover, nurse, and friend.
Most of all these, thanks are given to my loving God who continues to protect me and provide for our REAL needs. Who died for my sins giving me and all who are willing to believe salvation. We don't deserve any of it, and yet He continues to preserve and tend to those He's called out as His.

In closing, I want to share that I have been very run down for about 2 months straight. The cold and flu season is really hard for me even when I'm not on immuno-suppressive, but with treating my arthritis, my immune system takes a hit, and that's why I've been sick for so long. I get over one cold, just in time to catch the next one going around. Hopefully after this cold I'll be able to stay well long enough (a week) to finally take an injection. This is my HUGE prayer request right now. I know it makes me vulnerable again to any other colds going around, but honestly, after 4, you'd think that'd be it for this winter, right? I really want to inject because my arthritis is spiraling out of control. If I don't inject soon I'll need to go on steroids again because I can hardly rotate my back at all, believe me, that makes daily life tough. I don't want to go on steroids again, I don't like what it does to me. So my hope, and plan, and prayer is to get over this cold soon, stay well enough for a week, and then to inject and hopefully get my body moving again.

To all my fellow Chronic Pain readers, the following passage has truly been giving me lots of hope lately. I'm trying to keep it top of mind since my physical body is such a burden to me.

2 Corinthians 4:7-18

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.

Since we have the same spirit of faith according to what has been written, "I believed, and so I spoke," we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase THANKSGIVING, to the glory of God.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Today is Tuesday, here is an update, but I can't think of a title.

I was told that I haven't made a post in a while. Yes, I'm not sure what to write about these days. The comments that made me consider closing my blog had brought tears to my eyes. I cried a lot, and it's been hard to want to write since then. The things I post on here are things I spend lots of time considering, so I do take things personally. I am thoughtful, some commenters are not.

I've also been at a loss of what to write about because mostly I'm just writing about my symptoms. I'm so thankful to be over physical therapy, but I still feel worn out and sleepy a lot. It seems like after therapy I started getting cold after cold and with feeling sick and tired a lot I don't really see much to write about. I've spent a lot of time reading. I finally finished the first Harry Potter book, and am now in the second book. I loved it! I love reading, especially this time of year where the cold just makes me want to stay covered up and with my nose in a good book.

I'm working on my Thanksgiving list. I should post it soon, probably on Thanksgiving. That'll be another post from me soon too.

My family visited last week. It was OK. Dad was sick for the most part, it seemed like he slept a lot. Everyone did lots of chores for me, which was appreciated, but also overwhelming. I'm still waiting for a photo CD from my mom from their time here. I'll probably post some pictures once I get it. While they were here my arthritis wasn't horrible, which was good. I was afraid because I was mostly stuck in bed even up to a day before they came. I was finally over the colds I had, only to catch the cold they had about halfway through there visit. This cold has been the worst of the 4 I've had in the last 2 months. But it seems to be moving fairly quickly. I came down with it Wednesday, and already am feeling a lot different... not quite better yet, but MAYBE in a week or so I'll feel well enough to get back on my injections! I pray so, I feel so much inflammation in my body. The worst being my ability (or lack there of) to move my back. And pain that surprises me when I do try to move.

My mobility has been an issue, even with the help that physical therapy was. I've really found that my mobility is tied so much to my inflamation. When it's worst I can't move hardly at all, when it's better I can move around fairly free, though that's been rare lately.

While they were here we visited a museum and I used a wheelchair there. It was actually rather freeing to have a chair available, I'm glad the museum had that available. It reminded me of the words of an on-line friend of mine. She has A.S. and she told me the best thing she ever did for herself was to buy herself a walker so she could keep moving on her bad days. I'm grateful for my cane, but sometimes I need support on both sides of my body. About half of the rest of the time I was using my cane. There where a couple of times I didn't use my cane and this confused my sister. She didn't quite understand that I don't need it all of the time. And that I try not to use it when I don't need it. I think this is one of the hardest things for people to understand about my arthritis, just because I'm doing good one day doesn't mean I'm better, and just because I'm stuck in bed another doesn't mean I'll always be stuck. It also doesn't mean that I've given up, or given into my disease. Just because I need my cane sometimes, and would truly benefit from a walker doesn't mean I want it, it's just tools for better living. It's not something about attitude, but realizing what I need to do to have the best life possible.

I'm really saddened sometimes by the lack of understanding some people have. I try to be very open about what I deal with, and sometimes it's hard for people to understand that this is not something I'm doing to myself, or allowing to happen to me. There is no cure for it, just some things that help. Believe me, if there was a cure-all for this all of my on-line A.S. friends and I would be talking about it and shouting it from the roof-tops. No one wants a cure for this more than the person dealing with it. False hopes, and advice that (falsely says) there's a cure out there are very discouraging. God alone can deal with this. Medications and exercise CAN ONLY DO SO MUCH! Even if I'm someday blessed with total remission, I would still live with the reality that it could pop up again. Even if I someday get my hip replaced to fix my O.A. that still won't change the R.A. or A.S. it's complicated, and my life is even more complicated since I live with multiple things.

The first day my family was here (actually on our way home from the airport) we went to the mall and they bought us a stationary recumbent bike. It's great. I think it's even nicer than the one I was using in physical therapy. Siggy has already started scratching on it, which makes me mad. He's a good cat for the most part, but everything looks like scratching posts to him. Very frustrating. I've put a towel over the seat to help prevent his scratching, so far so good... I'm just wondering how long that will last.

The weather has been cold, and I'm surprised we haven't had snow yet. Any time we do get moisture it seems to head up from the south, so it's fairly warm.

My dear friend Juliet called me yesterday because I missed church last Sunday and she was wondering how I was doing. I sounded like a grumpy frog on the phone. Stupid cold. I've been half asleep most of the time, and my voice sounds funny. But getting her call was a ray of sunshine. It's so encouraging knowing I have such loving and caring friends. It truly blessed me.

The road is clear again

The road is clear again, but with the rapid changes in weather I again feel flat on my back! I drove to the next town and got Jack in the box for breakfast. I love their egg nog milkshake! I don't get shakes that often, but I always like that one this time of year (actually I'd go for it any time of year, but it's only available now.)

So I was thinking about yesterday's post and how I've finally been able to catch a breath, but how worn out I am from all of yesterday's stress. I was finally having a little bit of strength again thinking this flare was going to go away, but now I'm back to just wanting to SLEEP! I probably should sleep during the day too because I checked accuweather and it shows the arthritis index going up tonight. I couldn't get restful sleep last night, and I'm guessing I won't tonight either. My hips are really hurting me. So is my back and shoulders.



This morning has been really pretty, I'm so glad I went out. I took some photos that I'm thinking about selling now. They were that good. Now I'm torn if I should post them, well I'll share some, but the best will go to my store. Anyway, I was AMAZED as I drove a couple blocks away (that's all my immediate neighborhood is, a couple blocks.) that I could see Wallace falls! Wallace falls is a couple towns east of us. And while you can see spectacular views of it once you are in Gold Bar, you normally can't see it too well until you get to that town. I continued to see what I could venture so I headed west, away from the falls, towards my town (5 miles away), and the larger one. Even from a few blocks away from down town Sultan I could see the falls! Truly amazing the volume of water! Of course with the camera it just looks like a funny cloud with the rest of the clouds hugging the mountain, but with the naked eye, it was easy to tell it was the falls!

The spot where our road was closed was completely clear again, and there were no other spots with water on the road either. So this was not anywhere near as bad as a couple years ago. There is no visible flooding except for a couple of spots in some farm fields. I even saw brave fishermen trying to make their way down to the river to see if they could fish, though I didn't actually see anyone at the river.

Here's a few photos. To view them larger right click and open in another tab.
Early morning sky, view as I was getting into my truck.



View of Wallace falls a couple blocks from home! The white smudge right in the middle is the falls.



View of a very full, but not flooding Skykomish river as I'm crossing over it heading into town.



View of Wallace falls a couple blocks away from down town Sultan. (Yes, there is nothing but farmland that close to my downtown. I love where I live!) The falls are to the right of the large tree in the middle of the frame.



I'm so thankful that there is no real damage visible in my town. The farms and ranches near me, while very wet are all fine. It was amazing to see how the creek is back down to a creek instead of the river it pretended to be yesterday. There's been a few moments of very light rain today, but nothing that seems like it would encourage any more issues any time soon.

Well, I'm logging off to try and get some rest while I can. Unfortunetly I'm affraid my arthritis is probably going to keep me home for a few more days now. Every joint of my body seems to ache right now. Pain isn't terrible at the moment, but it is there. I think I'll take some Tylenol PM.

Health update.

So the last few weeks I've been pretty sick. Not really doing much of ANYTHING! I missed church twice. Last sunday I honestly was pouting in bed, trying to will my body to move, but to no avail. I so wanted to be at church, for whatever reason I had to stay home though. I was also dealing with on again off again fevers on the weekend.

My cold FINALLY feels like it's gone, which means I can inject again! I'm so thankful for that. But because it's been 5 weeks (it's normally 2 weeks) since my last injection, my arthritis is raging full force! My knees, back, hips, feet, hands, shoulders are all effected. Mostly my hips and hands and back. My hips keep making so much noise any time I move... it's kind of annoying.

I've had a few days where I've debated going to the ER to get something like vicoden, but really I can grin and bare most of it. And a lot of the pain and inflammation meds I do take, do take care of a lot. Right now I'm a hunch back though... the inflammation in my back and shoulders keeps slumping me over and down. I keep having to focus on sitting straight. It gets to be pretty painful.

I can't sit, stand, lay, or walk for very long... so I have to keep alternating between one or the other. I did make it to ladies fellowship a week and a half ago and by the end of the prayer I just couldn't stay seated anymore. I wanted to start pacing the floor or something, I just was so uncomfortable. I was really embarrassed by that. I always wonder if people think I'm rude for shifting or walking all the time, but if I don't the pain gets to where I can't think straight.

During the weekend when I was just sleeping and weak I didn't really have pain, for that I'm grateful, I had pain, but not like I do at this moment, taking the vitamins helped the energy issues but now pain is just out of control! I've been aggitated all morning. I cooked potato pancakes this morning, normally Kevin just makes himself oatmeal, but I felt like cooking this morning. I'm glad I did, we both enjoyed it, but sitting on my barstool felt like murder on my back, and then I'd try to stand and that felt like murder on my hips. I mostly sat and just enjoyed that I felt energy, but my hands are so horribly swollen. All puffy and watery. I'm back to icing them again, which gets frustrating.

I'm so amazed and thankful and grateful for my church family. There is SOOOO much that needs to happen at home. I'm still learning all the new ways I need to approach things, but these ladies have been so giving and so understanding and supporting. The prayer alone has been an amazing blessing. In the hardest parts of my disease I'd give anything to make it go away, but I know with out it, I wouldn't have need, and with this need I'm being blessed and I hope I'm blessing others. I hope that people can see that God is bigger than this burden of mine. That it's more than just being thankful for what others do for me, but that this shows the body of Christ at work, and all honor and glory goes to him, and not any one particular person.

I'm blessed beyond belief in how close this is drawing me into new and deepening friendships with some of the gals. I'm always a listening ear, and it's been wonderful to share and trust and pray.

Kevin was a work horse on laundry over the weekend. I'm so thankful to have a clean blanket on the bed! Simple joys! I need to kind of wrap this up because my fingers are very stiff. But I wanted to say that yes, I am in a lot of pain right now, but I'm thankful for friends, and for my Savior, and for my messy home that draws together the Body of Christ, oddly enough.

God knows what He's doing - So true!

Often times I come into discussions with people who want to pray away my arthritis or infertility. As if these issues are simply a weakness of faith, and they can fix it. This saddens me. Not the question of faith (though that has it's own issues) but because it limits God, His will, and His plans.

I would love to rid myself of these burdens, but intellectually I know that this is my body, my make up and my issues to deal with. Intellectually I know there are medical steps I can take to care for and manage my diseases, and I know my doctors have my best care in their interest.

Chronic disease and illness and infertility are all things that non-believers deal with too. These health issues are something that alienates and frustrates, even depresses. Who is going to reach out to such a person? To help them find grace and hope in Him? Someone who leaves them with broken promises and an accusation of not having enough faith to heal themselves? No, I think the people who might reach those people are the ones who know the depths of that despair and yet still have some hope in something. In God.

I want a normal life again, I want to have a day go by where I'm not limited with daily back pain and fatigue, and sleep issues and all the rest of the things I complain about, but if I didn't have these things, would I still have that connection with others? Would my story matter to them as much?

Now I'm not saying I have a track record of saving souls through my illnesses, I honestly have no idea if there are people out there seeking God because of my words, but, I have hope that I am doing His will, and that as a result others would see God's grace through me. I do know that people listen and internalize though, and that maybe they might not make a change of heart at this moment, but maybe it plants seeds and from there growth and spiritual healing begins, and isn't spiritual healing more important than any earthly physical healing?

Sometimes I hear people say God doesn't desire struggles and sadness for His children, but I struggle with accepting that at the same time as knowing there is an entire book, the book of Job, where God allows so many things to happen to Job. I am not saying I am Job, but I am saying that the Word does show us examples of God allowing His faithful to endure horrific things. And in the end is what matters. In the end of Job's story he has a deeper understanding of the awesomeness of God, he has a greater appreciation of the gifts he receives from God, and his testimony of faith grows from it. What an amazing legacy! And all through suffering.

Our pastor recently wrapped up a sermon series on the book of Job, and the whole thing was very much an encouragement to me. Even though the sermons have now switched gears to the book of John, God is still having me examine Job's story... Yesterday I made a new online friend who also has Ankylosing Spondylitis. It was so encouraging to see another sister in Christ dealing with the same issues as me. I'd never wish this on anyone, but knowing I'm not walking this road alone was a great encouragement! Still thinking about Job, while rejoicing over this new friendship, I opened my blog feeds to see a new post from her, and it was on none other than this very topic! Amazing how God is laying the same Word on our hearts!

After I read her post the ending stood out to me quite a bit.

God owes no one anything. No reasons. No explanations. Nothing. If he gave them, we couldn’t understand them. God is God. He knows what he is doing. When you can’t trace his hand, trust his heart.

Please read her post as a whole, but I had to share that part because it's so true. If God heals me of this disease and/or gives me children that is only out of His goodness, grace, mercy, and would truly be a gift. But I can't be envious of not having that gift. Just because it's possible doesn't mean it's intended for me. I may have far greater gifts and blessings in my future that I can't understand now... Having an entire book in the #1 read book in all the world certainly would be a huge treasure, but I seriously doubt Job had any idea of that as he endured his sufferings.

I firmly believe there is a purpose for me being at home, sitting on the net in my PJ's, making connections with others on this road and praying for and with them about these things. This will not change the fact that I have days like yesterday where all I could muster was to text my hubby to pick up pizza on his way home. Or the times when the chemical issues of my illnesses cause me depression, but what does change is how I get through it all, that while things feel overwhelming on a constant basis I still have my hope and faith in Christ. I still trust that a day will come when His believers are taken to a new life, a heavenly life. I so look forward to that day! I hope my journey encourages others to find such a hope for themselves as well.

I'm so thankful for this new friendship. The isolation has felt overwhelming, and as I was going through her blog I was reading things that I swore I've written myself. There is a sense of camaraderie there, that isn't found elsewhere. And I can't think of many other causes or reasons that would bring a new friendship together between to different people on opposite ends of the states together other than God and His amazing gifts. The internet is a powerful tool, and I'm blessed that when I prayerfully use it, God uses it with me to my benefit.

I've also been focusing on Romans 5:1-5 (ESV) My dear friend Dana brought it back to my attention recently and I am seeing it with a greater understanding this time. Dana is also a blessing of friendship that God has blessed me with. She also struggles with her infertility, and yet continues to find her hope and faith in Him. Her openness, honesty, and candid reflections of her journey blesses me. I've often meditated on Romans 5:1-5, but have found now that I've missed a major part of it.

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

The part I have been missing is the journey. It's so easy to see the gifts in this passage and say "Yes, Lord! I claim this for me! Give me!" But there is a reason this passage lays out a journey. You don't get instantly teleported from sufferings to hope, there's mile markers along the way, there is endurance, and character, and then, finally we get to hope. I see how in other parts of my life and spiritual walk I've arrived at hope, but I see that in this particular journey I'm still somewhere between suffering and endurance. I see too that the times I've made this journey have given me the roadmap to hope on this particular trek, for that I am thankful. The peace I have through faith is how I am reminded of this. It's were I've seen my past sufferings grow me to the point I am now, and equipping me with the understanding that "More than that, we rejoice in our sufferings!" because only by dealing with suffering can I walk the path of endurance, character and hope.

Another blog post I cam across that follows in this thread is here, for those of you who want to read this topic further now.

Arthritis Walk post-game wrap up.

The walk was loads of fun! There were people at every corner cheering us on and the weather was freezing but beautiful! When we left home it was still 29 outside, at the most it warmed up to 55. Before we left there was so much ice on the car that we had to take about 10 extra minutes just to scrape it all off. It looked like snow on the driveway when we were done. Still no snow here, but with frost like this, it's yet another thing that makes me think we'll have an early and cold winter this year!

We enjoyed clear blue skies, views of the Olympic mountain range on our drive out to the walk, and after the walk we detoured for about 20 minutes to enjoy views of Lake Washington too. Just such a beautiful day all around, even if it was freezing cold!

This last week I noticed more problems with my camera. I put in perfectly good batteries and it says for me to change them. So now in addition to the flash not working I can't even get it to power on. My dear techie hubby started working on it tonight after the walk, but I don't know if he found any resolution or not. As a result though, I was only able to take pictures with my cell phone, so they're tiny and crappy quality, but at least I have something.

Also, our friend wasn't able to join us, so it was just the two of us. We enjoyed it though. There was still all the crowd around us too. I wore three strands of beads. One for Rheumatoid arthritis, one for Ankylosing Spondylitis, and one for Osteoarthritis, my three forms of arthritis. I was trying to explain to Kevin that it's really only 2 types, because RA and AS are the same disease, AS is just a more specific version of it, it'll also sometimes be called Rheumatoid Spondylitis, it's the same thing. Anyway, as you check this off the list it's three names, so I wore three strands of beads.

Before we got to the walk I was doing great! The unpredictable weather of last week, and the start of this week had calmed down enough to the point where Thursday night I started feeling a lot better and was hopeful that the walk would be as much fun as it turned out to be. The ONLY downside was that during the pre-walk warm up my back started tightening from a combination of the freezing cold air (I did have a quilted coat on! Super warm!) and one of the warm up twists that my hips and back did not like. Most of the warm up exercise was much like the physical therapy stuff, so it was easy to do, but that one little thing... ouch! We had to wiggle our hips in circles and figure eights and that hurt me. As a result, after half a mile or walking I realized I needed to do the 1 mile walk and not the 3 mile walk. I was bummed, but I was already walking at the back of the group at that point, and my back wasn't going to give me any relief unless I sat down to stretch it some. So we headed down the 1 mile walk after all, and that was nice. That route had loads of bus stop benches so every block or so I was able to sit down and stretch. I ended up being the last of the 1 mile walkers, but about half of the group was still coming in from the 3 mile walk, so we hung around and cheered others across the finish line and listened to music and such.

I didn't get too many pictures because it's hard to juggle water, a cell phone, and a cane... and boy am I glad I brought my cane! There were lots of hills (it is Bellevue, WA after all.) and the cane helped me keep up with the back of the line. I was surprised that I only saw one other person using a cane, but it also seemed like most everyone participating in the walk was doing so on behalf of someone they know. There were lots of people wearing 'in honor of' name tags.

As we crossed the finish line we were all handed cards with shoelaces on them... and 50 of them happened to have gold stars meaning that those people won a free dinner at McCormick & Schmick's Seafood Restaurant, and I was one of the winners! Now, this is kind of funny because I'm allergic to seafood, but at least I'll be able to give my hubby a nice dinner out for his birthday next month! Ha,ha! I did check the website and they do have vegetarian, beef, and chicken dishes too, so I should be OK. It made me feel special to win something!

After the event I came across a few links worth saving...

Let's Move Together is a new campaign by the Arthritis Foundation. This link was on the cards we were handed as we crossed the finish line. It's a site to encourage walking to prevent and aid people who have or at risk (family history, ANA results, etc.) of arthritis.
There is a flickr group for the Arthritis Foundation, so I joined that... I want to see if anyone posts pictures from the walk today. Also found the website for the local chapter. And the leader-board for the fundraising teams of the walk we went to. I'm so proud that we made such a dent! We're about halfway through the list, just the two of us (Team Sultan Wilson Family)!

At the moment you can still donate through our page, even though the walk is over. If you had hoped to contribute, but didn't get a chance yet, feel free to click here to be taken to the donation page.

And now for a few pictures... Yes we have eyes, but the sun was so bright the tiny camera on the phone couldn't give details.

Kevin, me, and some of the sites.

Oh my! It's 3 am, in a matter of hours I'll be walking 3 miles!

Yup! It's 3 am and I'm up. I actually went to be super early and woke up around midnight, and now I'm struggling to get back to bed. I was SUPER thirsty. So now I should head back to bed to try and get a few more hours sleep before I leave to walk, but I just wanted to mention right now that we exceeded our goal! Kevin raised his goal and passed it a little, as did I. When the cash donation goes in tomorrow the two of us will have raised $370 for arthritis awareness, support, and research! Simply amazing!

Lots of last minute donations made it possible for Kevin to reach and exceed his goal before the walk, for which we are so thankful!


Now to get some sleep so I can be well rested and enjoy the event.

THANK YOU TO EVERYONE WHO HAS CONTRIBUTED! IT MEANS A LOT!

Just a day away!

I'm finally feeling better, and just in time for the walk tomorrow! It's still been drizzly weather, so I'm not looking forward to having to bundle up, but I'll still do it. Nothing will stop me from walking for arthritis awareness.

This time tomorrow Kevin and I will be loading the car up and heading out. We'll be meeting up with a friend of ours from church who will be joining us. Then we'll be heading down to the walk, an all day thing! If I continue to feel well tomorrow I plan on doing the 3 mile walk, but if my hips start acting up again I'll be doing the one mile walk instead.

I'm so excited. I just keep hoping the weather will be nice, and the batteries in the camera will last. It'll be a big day.

THANK YOU to everyone who has helped me with my fundraising! I'm amazed at the generosity of so many people. While my goal is met, it would still be nice if Kevin could raise more too, but I am just happy to have him walking with me.

Rheumatoid arthritis - There is no cure, but there is hope!

Up all night swollen

Yup, my hands are swollen. I had to ice my hands after cooking dinner tonight. Pretty sad, but hey, that's arthritis. And I can't move my back hardly at all right now. And my neck has been stiff for days. I guess my neck was the first to feel the cool rainy weather that has rolled in. Don't get me wrong. I am completely happy that rainy days are back, I have plenty of arthritic days all summer too, the heat fatigue can be unbearable! During the day I thought I felt pretty good, and I had the mental energy to get some stuff done, but when it came down to it I was back to standing for only about half an hour before my back pain was just feeling like murder.

Hands are still swollen, and my knees are a bit too, I'm guessing my shoulder/back of neck may be as well, but I can't see behind me. LOL! I just feel swollen. Ladies, I think you'd know what I mean, that feeling during that time of the month, well, I feel it elsewhere in my muscles and joints.

I'm not complaining, just giving a progress report... and a prayer request that this storm that's looking to dump on us all week doesn't stick around or bring in another on the 11th. I'm really looking forward to the Arthritis Foundation's fundraiser walk, but I'm guessing most all of us will be suffering if it's weather like it is right now in a little over a week.

Wow, time is flying by quick! It seems like just a couple days ago I started fundraising, and here it is 8 days before the event and I've completely raised my goal twice, almost three times over, and I've been helping Kevin do his fundraising too! He still needs a few more sponsors if you are still thinking of helping.

So because I'm in too much physical discomfort to sleep I decided to see if accuweather agrees that I should be in this much pain... here is what the site showed me for the current arthritis index... yet again proof that my symptoms are so closely tied to the cycles of weather. So my plan now is to take some Tylenol PM to try to sleep, because if I don't get it now, it looks like it'll be even harder Friday night.

Faces of PCOS

I haven't posted much about PCOS lately and I was thinking about how my recent treatments and such have kind of caused me to ignore that I also live with PCOS. I've talked about my infertility, but not really why I have infertility lately.

I've noticed that my depression, female issues, and arthritis pain have been pretty heavily linked lately. I need to restructure my treatment plans for PCOS, and because I haven't yet I'm feeling many of these issues growing again. Fortunately I'm not gaining weight, but I think that's because of how active I've been for the physical therapy I just completed. I'm hoping to soon buy a recumbent stationary bicycle to keep up on those benefits. I have an Ab lounge, which is fun, but it always aggravates my vertigo tendencies and I just don't want to live dizzy all the time, so I'll probably sell it soon.

My cycles have been completely messed up for about half a year now. A little over a year ago I switched from Lowestrin birth control, to Yasmin birth control. The result has been less control of my cycles, depression, insomnia, and fatigue. Now some of those issues could be PCOS itself, or depression itself, or arthritis... I just get to be a big puzzle. In any case, the cycle disruption was the reason I stopped that medication. Since I am no longer on any medication treating my hormones (I'm not taking metphormine either, until I can afford the meds.) I've started having 2-3 migraine headaches a week. More inflammation with my arthritis, tons of hair growth and I already wrote about my completely absent cycles.

I'm starting to search various sites to see that there are a fair amount of PCOS women who also have arthritis and how their two diseases link. I find it both depressing and affirming to see that there are other women dealing with both, and who see the treatment of both as being linked. As I find out more I'll try to post some links in regards to this, but if I don't and you're curious just do a web search for PCOS and RA or arthritis.

Since I'm poking around the soulcyster site again I came across some videos from fellow women with PCOS. I thought this following one was gutsy and worth a view. Her language is not for everyone, but her message is a very true issue; That hollywood and popular society give nothing but negative feedback and disgust to a woman with many of the physical symptoms of PCOS.

When I was in high school the only play I was able to be in, I was an old lady, a church lady set in her ways and picked on, and it just was depressing. I did the roll, and I was proud of my performance, but I was self conscious of the fact that my size was more of the character than my own acting ability. Fortunately I had loving friends and family in the audience and I just focused on having fun with the roll and pretending there was no one else in the audience.

I truly appreciate what Dove does with their campaign for real beauty. I wish more companies would be so caring and honest. It causes more harm than good to tell someone who is different how they are different. Why not bring people up and tell them how they are valued and exceptional. I never thought about myself as having great hair, or pretty coloring, or a face that naturally doesn't need make-up, but these simple beauties are true of me. I'm actually really perplexed when someone stops me to tell me my hair is healthy and beautiful because I don't focus on that, my whole life tells me I'm a failure for being plus size and that society looks down on this, in all honesty I have done nothing to myself to live like this. The poor people who eat high fat and sugar to cause their obesity have a much different issue going on, for those of us who are not the normal size tend to get lumped together with that group and it's very humiliating. I honestly do not like eating out because I don't want people around me to think it's what I eat, or overeating that has caused this. The truth of the matter is that 'over-eaters' has become, I think, too much of an issue in recent decades and now society is lead to believe that it's the only way one becomes over-weight. WHICH IS SUCH A LIE!

I'm not looking to write much more, I just wanted to write enough to set this video up. I think this gal is gutsy for willingly growing out her beard and trying to video it. The video doesn't show it that well, but as someone who has to deal with it too I could see it more than I'm sure others could. Well, here is the video. She puts it all on the line. Open and honest, if more people were this strong then maybe some of these ridiculous stereotypes could be smashed!



Here is one more I just saw and feel needs to be shared.

Causes more harm than good!

In the comments section of my post 'Pain causing pain, considering Cymbalta', I got a comment from an anonymous Jennifer who went on to LIST out to me all her 'advice' on what I 'need' to do after she very casually saw just that one and only post of mine.

What bothers me is she glosses over the reality of my diseases by saying "I have to say, I feel terrible for what you are going through. It sounds horrible." And then goes on to list out unsolicited, unknowledgeable and misguided advice.

This person went on to tell me that medicine is bad, and that I'm wallowing in my issues. First of all so what if I wallow!? And I totally don't see it that way... I know I'm sharing a lot, candidly, but this is the reality of infertility and disability - I'm not going to ignore my issues, and I'm going to honestly share what is happening with me, so if it comes off as wallowing that is their problem. As I have said many times, "This life is full of happy and sad, good and evil, right and wrong... that being said in our lives we have to deal with various things, and if we don't deal with them they become bigger problems the more we ignore them! I refuse to ignore my problems of arthritis, depression, and infertility, and I will continue to share what I learn and what I go through because it's good for other humans to understand that this life has suffering, that some suffer more than others, and that there are many ways of taking care of ones-self." SO I'm sorry if this honesty makes someone feel bad about themselves, or bad to see the reality of what others deal with, but telling me the things to do that she did was completely not helpful, but was offensive and hurtful!

I was told to not pursue Cymbalta (even though I have had medically diagnosed and treated depression for years.) but to pursue Chiropractic care, AND told that it should be able to address my infertility as well. Both depression and infertility are complex medical issues. While there are many benefits with Chiropractic care for many issues, this is not appropriate here. Especially with Ankylosing Spondylitis! Chiropractic care is too stressful on the body. Fusion happens in a person with A.S. The spine becomes one large bone and inflexible. If an alignment were to be tried the back can be broken! And that is a huge issue! I take great offense in misguided information from someone who claims to know this is what I need and yet truly has no idea what is even happening! Or who doesn't even know me and my diseases!

Her advice also included that I read a particular self help book. Looking on Amazon I read many comments ripping apart this book. Between the ratings and the description from the book itself it is something I would never pick up. It is a new age book. I am a Christian, and I refuse to take in something that would contradict my faith. The recommended book is "The Secret"

My faith is a core reason I see to share these trials I live with... Day in and day out may be hard, but my hope is found in Christ, I know someday this life will end and I'll have a new heavenly body and life. That these things that matter in this world will pass away, and that this new life will have much greater meaning! I find this a wonderful truth and want to share it with all. Becoming a Christian won't make this life all of a sudden seem like a cake walk, but it does give one hope. I think to someone who doesn't understand this they can't see just how important this is, but to someone looking for hope beyond their earthly burdens I would hope that sharing my experiences and yet still keeping my heart focused on Christ can be a witness. For that to happen though, the reader would have to look at the whole picture, which goes back to how misguided the person is to try and tell me they know what needs to be done to treat my issues simply from reading one post!

Going back to the book that was recommended to me... something that I read in the reviews on Amazon that stood out was the following paragraph;

All you have to do is just ask (oh, and believe, and feel) for the thing you want and lo and behold, thou shalt have it! I quote: "Make a command to the Universe. Let the Universe know what you want. The universe responds to your thoughts." Another one: "The Universe will start to rearrange itself to make it happen for you." Really? I didn't know the entire universe cared so much about me!

Now, this is someone else's quote from a book I haven't read, so I'm taking there word for it, but what first came to mind is how this is taken from Scripture, and twisted to fit these authors feel good fluff. This can be seen in Matthew 17:19-20 (English Standard Version)

Then the disciples came to Jesus privately and said, "Why could we not cast it out?" He said to them, "Because of your little faith. For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, 'Move from here to there,' and it will move, and nothing will be impossible for you."

It sadness me that this book has partial truths in it, but misses the real reason life can be better. Life is a gift from God, and if I'm wealthy that's a gift, if I'm healthy that's a gift, if I have children to love and raise that's a gift, if I don't have these things, it's not something I should be demanding from the universe. I am perplexed why this is my journey, but I trust God and I do see Him working in my life, so while I may be uncomfortable I know this is where I am to be. I do have blessings that are God given that I am so incredibly grateful for! I have an amazing husband who continues to love me and care for me, I have friends who are truly kind and caring, and medical professionals who have my well being at the center of their care. For these blessings I am blessed!

The reality is that in this imperfect world people will have disease, people will have suffering, people will have needs. Christ said this Himself.

The poor you always will have (Matthew 26:11)

and in the Beatitudes...

Matthew 5:1-12

Seeing the crowds, he went up on the mountain, and when he sat down, his disciples came to him.

And he opened his mouth and taught them, saying:

"Blessed are the poor in spirit, for theirs is the kingdom of heaven."

"Blessed are those who mourn, for they shall be comforted."

"Blessed are the meek, for they shall inherit the earth."

"Blessed are those who hunger and thirst for righteousness, for they shall be satisfied."

"Blessed are the merciful, for they shall receive mercy."

"Blessed are the pure in heart, for they shall see God."

"Blessed are the peacemakers, for they shall be called sons of God."

"Blessed are those who are persecuted for righteousness’ sake, for theirs is the kingdom of heaven."

"Blessed are you when others revile you and persecute you and utter all kinds of evil against you falsely on my account. Rejoice and be glad, for your reward is great in heaven, for so they persecuted the prophets who were before you."

Who are those who mourn? Who are those who are meek? Who are those who are poor in spirit? Are these not those who are burdened with this world? Doesn't this sermon of Christ's show that after this life there is something so much more!? So I feel the need to let others know they're not alone, that yes it's a dark and painful place to be to live with infertility, or depression, or chronic pain, or something else, but I'm not going to sugar coat things because I don't want anyone to think that these issues are any less than what they are.

I find the anonymous comment very shallow, and it makes an effort to sweep me under the rug. In my other post about what my friend Anne shared with me, I shared what she said because of the truth in it. In this day and age people are too uncomfortable if they have to think about what others deal with, and how much of a help or friend is that? It isn't, it just doesn't help! That particular post is just before the one I'm talking about now, so it could have been read together and taken into consideration together and it wasn't. Again I quote what Anne said...

We live in a society that has a false sense of happiness - that is not the only valid emotion. And I personally think that it's the uncomfortable, awkward things that can help us grow. Society and The Church (!!!!) need to be aware of what goes on in the heart of an infertile young woman. A young married couple having kids is the accepted norm, and there are so many unbiblical and (I think) evil assumptions about IF in the church. The only way we will find the support we need and be able to reach out to others experiencing the same heartbreak is to share our story, share the depths and truth of the grief we encounter.

I see this as applying to all suffering, and is why I'm as honest as I am in everything I share here. I don't have many regular readers, and I can understand that, because this isn't a happy all the time place. But to those who do read more than one post my hope is that you don't see just the negative, or just the happy, but the journey as a whole. To see this story for what it is, ups and downs, victories and losses, blessings and needs. And that Christ is who my hope is placed in.

If someone wanted to truly help me it would look like this;

Helping around my house, helping to pay medical needs, supporting my participation in the Arthritis walk, praying along with me and others, listening and being a caring friend.

I do have people who do some of these things, for them I am truly blessed and grateful, but to someone who wants to give me advice on something they know nothing about, I share the following buttons (because I have nothing more I can say)...

Pain causing pain - considering Cymbalta.

Right now I'm dealing with my pain (lack of management) causing my depression to spiral deeper and the two keep feeding off of each other. On Sunday I couldn't get out of bed. My sleep has been completely disrupted, getting a few hours here and there, any time day or night, and feeling like a zombie the rest of the time. I will make an appointment with my Rheumatologist once I can get past how foggy I am right now. I'm going to ask if I need to add Cymbalta to my medications since I haven't been able to take Prozac in a while and not medicating my depression is starting to take it's toll on me again. The last time I was treating it was last summer while Tony cat was sick and I continued a couple months after he passed away, but eventually the dizzy spells and migraines from it became too much so I just stopped. I know I shouldn't have, that I should have asked a doc to switch me, but I'm so sick of appointments I've just been avoiding some because I feel like going to appointments would become a full time job right now if I did, I'm already out of the house for physical therapy twice a week right now, and that's taxing.

Anyway, from what I keep reading, Cymbalta is the anti-depressive of choice for those with chronic physical pain issues and depression too.

The majority of my pain is in my back these days. I think physical therapy is working well for my hips, but that my back is either getting worse or is more noticeable with the hips not being as much of an issue. The back pain is keeping me from sleep. I feel like someone kicked me in the back and now it's all achey and stiff. Or like I have a lead pipe around my spine. I'm suffering limited balance and limited range of motion and I'm find myself leaning on counters and using my cane more even though my hips are a bit better. (Bursitis anyway, still dealing with Osteoarthritis and labral tears there, that only changes with surgery.)

Because this makes sleeping impossible, the lack of reparative rest makes my head foggy, pain more intense, and depression worst. The following is something I found because I was wondering what, if any, information might be out there in regards to A.S./R.A. and depression. I found that, like a lot of other forms of depression women are effected more than men. Kind of interesting that they could monitor that considering males are diagnosed with A.S. more than women, but according to the Spondylitis Association of America those statistics are changing.

Here is what I read;

Wiley InterScience

Depression has been established as a common reaction to rheumatoid arthritis but has rarely been investigated among people with other forms of arthritis. The present study examined the prevalence and determinants of depressive symptoms in people with ankylosing spondylitis, focusing on gender differences and set in the context of widely held medical views concerning the psychosocial nature of ankylosing spondylitis patients. Results showed that approximately one third of the ankylosing spondylitis patients reported a high level of depressive symptoms and that women reported more depression than men. No evidence was found to support the stereotype of the typical ankylosing spondylitis patient as being less depressed than people with other forms of arthritis. Pain was found to be a major determinant of depression for women, but was of lesser importance for men.

Depression in Women - Spondylitis Association of America;

People with chronic diseases are more prone to develop major depression. In fact, a British study showed that 37% of people with spondylitis suffer at least one bout of depression during a lifetime. Fortunately, more than 80 percent of people with depression can be treated successfully with medication, psychotherapy or a combination of both.

Women experience depression at roughly twice the rate of men, although it is an illness that affects both sexes. Contrary to popular belief, depression is not a "normal part of being a woman" nor is it a "female weakness". Researchers continue to explore how issues unique to women may contribute to the increased rate of depression. Such issues include reproductive, hormonal, genetic or other biological factors; abuse and oppression; interpersonal factors; and certain psychological and personality characteristics.

About one in every eight women can expect to develop clinical depression during their lifetime. Depression occurs most frequently in women aged 25 to 44 (Note: when a women is most likely to begin feeling the symptoms of spondylitis), and depression in women is misdiagnosed approximately 30 to 50 percent of the time.

So all this being said, I'm trying to get out of my fog. Finish up my physical therapy in the next couple weeks, and make an appointment with my Rheumatologist to find out what my next step is with physical therapy, and to see about adding Cymbalta. Most likely I'll need a new script for physical therapy to this time work on my back. I also need to remember to get a new referral for an orthopedic surgeon. I had one in my purse, but I took it out when we went to California because I didn't want to loose it, and here I've gone and lost it! I've looked all over and just haven't been able to find it! A lot feels chaotic these days. So disorganized and frustrating. I'm hoping things will get better soon though.

I'm really just making this post to remind myself of all these things, to keep track of the information I've found and to remind me to share it at my next appointment. I'll be OK, I've pulled out of issues like this before.

2nd goal met! WALK ON!

MY SECOND GOAL FOR THE ARTHRITIS FOUNDATION'S FUNDRAISER WALK HAS BEEN MET TOO! So now my focus is on helping Kevin reach his goal. He has finally signed up and you can see his page here.

From his page you can make a contribution and see a picture of him on a hike we took on my birthday a couple weeks ago.

Thank you all who have contributed and who plan to contribute! This is so meaningful to me!

Also, if you would like to join our team and walk with us (For those in the Puget Sound area.)
you can do so from our team page. You can also make contributions for the team, though I would hope that people would help Kevin reach his goal first.

THANKS AGAIN!

THANK YOU! First goal met in Arthritis Walk fundraiser!

I have now reached my fundraising goal for my walk, but I still encourage everyone who can to help!

I am planning on signing Kevin up to participate too, he was going to simply walk with me, but I think with my goal being met we can make more of an impact by having him also be a fundraiser!

THANK YOU TO TWO PEOPLE! Josef H., And Sandy T. who each sponsored $50.00!

Because I met my goal before even contacting everyone I planned on contacting regarding this, I am now increasing my goal to $200! Won't you please join with me in this fundraiser!?

Again, the link to my fundraiser page is on Kintera. You can click here to be taken to that page.

For those of you who would rather send in a check, you can also print a pledge form from my fundraiser page and send it to the foundation. It will record just the same, though this will take longer to report on the fundraiser site.

On a more personal note, I have two weeks left of physical therapy, after that I plan on taking a break from it until after the walk, I will continue to do my work at home though. I still plan on walking the 3 miles and welcome anyone who wants to join in my walk to either come along on the 11th of October, or sign up to join our team and fundraise yourself. Either way it would be nice to have more people along. I plan on bringing a backpack with my camera, batteries, water, small first aid kit, medications, sun lotion, tissue, chap-stick, and snacks. I'll use my cane too. I know I'll be slow, so I plan on being prepared. But I don't plan on letting anything get in my way of participating in the walk! You can see a map of the 5 K / 3 Mile walk here. It's in downtown Bellevue, WA.

Thanks so much for your support!

Fizz!

This morning I awoke to this odd symptom I frequently have, but no doctor has able to pin-point, or has even ever heard of before. With all the issues I have medically I have always wondered if I'm just not describing it correctly, but when I go to think about it I always come to the same two ways of describing it.

For years now, and probably since my arthritis issues very first started showing up (High school) I've had these weird sensations in the back of my neck. I had them as a kid too, but they have been way more as a teen and adult. It feels like someone running their finger from my shoulders up the back of my neck as lightly as possible, so I can barely feel it, and it always accompanies, simultaneously, a fizzy sound that travels upwards also. Normally this happens while at rest, though I've had this happen with activities that tend to cause the neck to get stiff. Typical times aside this seems to pop up and disappear completely randomly any time it wants.

The sensation lasts anywhere from a couple seconds to about 20 seconds. It's fairly quiet so normally no one hears it except me. Kevin has heard it though, he said it sounded like a slow burp in a closed throat, or something like that. What I hear is more like soda bubbles or the fizz of an electrical power line, and it definitely feels like the sensation and sound are the same thing.

Reading this thread where others describe it I see that many have back or neck issues for some time. As have I. I've always perceived it as part of my spondylorathropy, even if no medical professional helping me with that has ever heard of it. Many of the other people mentioned a connection with when they are hungry. At the moment for me that's true, but I don't know that it has always followed that way. I DO know it seems to follow more so with my flair ups and muscle fatigue, and more so when I get overheated or stressed. So there may be something to a stomach/nutritional needs theory but it hasn't ever seemed like that strong of a connection to me.

I keep hoping I'll find a tie to it with my searches for information on Ankylosing Spondylitis, but so far this is the closest I get.

This morning it woke me up after 5 hours of sleep, also am dealing with a very stiff body (all over morning stiffness) and a headache that is threatening to go to a migraine that I've been dealing with for almost a week now.

If anyone else has ANY information about this, has had this, or any doctor who can point me in the right direction, PLEASE COMMENT!

It's not that it's any kind of painful, or anything that makes me worry, it's just creepy, it always feels foreign to me and kind of startles me even though I've experienced it countless times before.

Well, now I'm sure you all think I'm crazy, but at least I can point to others on-line who mention the same thing as me!

More AS facts that are probably just for me.

So I was poking around on about.com regarding muscle twitches and spasms. I slept super hard this morning and now have a knot the size of a mandarin orange in my right side (the side I slept on). I'm sure this is more of my auto-immune stuff, so I was poking around and found that About has an Ankylosing Spondylitis screening quiz. I decided to take it, and here are my results...



Now, because of my research on AS I know there were a couple things that I checked contrary that knocked down my score, but doesn't mean I don't have it. Like one of the questions was am I male or female, and because I'm female it knocked the rating down, but the reasoning there is because men are affected more than women by a ratio in excess of 2:1
And the other one that knocked my score down was that I don't have lots of eye inflammation or bowl issues. But those two are only a fraction of AS patients. Not all with AS have those, and for many it's an issue that arises as the disease continues untreated. (From what I understand in all I've read.) So just because those things aren't issues I deal with doesn't mean that AS isn't the right diagnosis. What all this does mean is statistically it would seem that a diagnosis of AS is appropriate. That treating my symptoms as such makes sense (I guess I'll crack open my Tai Chi DVD...) and that I should probably make sure my Orthopedist and physical therapists understand this issue about me.

I find the internet a real blessing. It gives me tools and resources to seek and bring questions and test results with me when I do go to my doctor visits. I've said it before and I still think it's true, that AS actually is a relief of a diagnosis to me because if my spine does fuse someday, yes my mobility will suffer, but my actual pain will greatly decrease, and that would be such a huge blessing.

I really hope that when I make posts like this one that it doesn't come off as complaining, but as informing. I know I've had this for years. It was debilitating when I worked retail, and to know now ways to rest and stretch and exercise properly has made my life so much better. Before I was at such a loss. So I share these things hopefully to raise awareness. I mean before I started really piecing this all together I had no idea that there was a type of arthritis like this. Sometimes it makes me feel like it all makes sense now, that a lot of my pain issues were not things I did to myself to cause them, but things I just didn't know because I didn't know what I was dealing with something that not everyone knows about. So I feel it important to let others know what I'm dealing with, to give validity to my disability and to let others know what to look for if they're dealing with such things as well.

So that's all for now I guess. This last week was rough sleep wise, so I never was really with it enough to make my phone calls for my appointments. I must be done Monday. I'm pretty sure I'll be able to, my sleeping is starting to even back out to 8 hours per night, or morning.

I'm still not certain if my injections are helping my AS symptoms or not, but they are helping my RA symptoms, I've actually been writing recipe cards by hand and while I have to take lots of breaks at least it's legible, so I'm happy.

Another bitter mother's day for this childless mother.

In the 9 years of knowing of my infertility I think I've made it to church on mother's day maybe twice. I remember watching as the mothers got roses and it feeling so painful that there was a visual marker of how broken my womanhood is. That I can't just pop out a kid like all these other women. Yes, I know I've only been married 8 years of that, but I was diagnosed with PCOS because of the symptoms not the infertility right away, I guess technically that wasn't stated until later, but I knew I had it too because of annovulation. This year I had hoped would be different.

Many days do go by where my infertility doesn't sadden me, and I'm grateful for those days, and then there are days that just slap me and I can't avoid the pain. Often mother's day is a day I hide under the covers in bed, afraid of the sadness I'd face if I left the house. This last mother's day was weird. This year I was thinking I might be strong enough to leave the house this mother's day. As it turned out it was when we'd be driving home from visiting family. So we were on the road, I'd be missing church anyway. I felt like I wasn't hiding this year, until we stopped for lunch in Salem, OR...

In the morning before we left our hotel room I took some time to look up the locations of a few places I could get smashed pennies along the way home. One of them ended up being a children's museum, so we didn't go in, that was awkward, and I wasn't going to let it get me... it would seem strange for two childless adults to go to a children's museum no matter how fun it really is. Out of the corner of my eye I saw a poster that said mom's get in free with one paid ticket. That started to get to me too. My shell of strength was weakening...

We drove across a few blocks to a park that also had smashed pennies. I got some and we stopped long enough to take in the park and stretch little bit. I saw family after family pass by me to celebrate together, many being 3 and 4 generations! That really saddened me. I longed to have chicken in the park with my children, and wondered with sadness if that would ever be. As I sat in the truck leaving I was mad at myself for being sad, but I was sad because I couldn't have those simple joys for myself. Who doesn't want to smile when they see a baby smile at them, or laugh a little while hearing a child tell a silly story that only a child can get away with saying. I love those little things, and it breaks my heart that I can only observe and not live these things. We ended up driving through Mc Donald's for lunch (mom gave us a gift card) and continued driving. I slowly ate my meal siting in the truck driving home. Not completely crushed, but a bit shell shocked that this day devoted to those blessed to have children still hurts me so. I don't want to cry these tears anymore, I don't want to hurt, I don't want to answer any more questions of why we don't have kids. I just don't want to feel like a freak anymore because my body won't just readily work like all other women out there.

Coming home I had so many blog posts I needed to get caught up on. I got choked up seeing how some families we know their babies are already turning 1 and it seems like just yesterday when I was shattered in a million pieces by learning that so many people we know all at once were pregnant.

I still have this sinking feeling that God is closing that door for us and I'm fighting it and causing more pain. I feel so hopeless and helpless when I consider I just found out I have osteoarthritis as well as rheumatoid arthritis! It all adds to a long list. I'm constantly at doctor appointments. And now I'm heading back again on Monday to go over the MRI results and find out more. I just feel so lost. So sad, and so alienated. I don't expect others to understand, but I need you to understand that if I don't seem chipper or myself these days, these are the burdens weighing me down. I'm just wondering if life will ever start making sense, or if that's all just a part of the curse of this being a broken fallen world.

I'm going to end for now because if I don't I'll just type all this over again in circles. I'm sorry this post puts a damper on anyone else's reflections on mother's day, but this is my reality.

crushed

So I'm blogging a lot about everything except what we did this last week. I'll get to the pictures of the spa and the cooking school and so on soon, I'm just trying to breath and catch up here at home first.

With being gone so long I have a lot of mail to go through today. Apparently instead of calling me a letter is what my rheumatologists office decided to send to tell me about my MRI scans. The news is a real mixed bag that leaves me crying and confused!

Apparently the scan on the hip shows two labral tears, as well as osteoarthritis. I AM 28 years old! How can this be!? The scans also showed that more scans for my back are needed as well. AND if all of this puzzling news wasn't enough, my SI joints are normal. Since my left hip hurts just as bad as my right hip I'm sure she'll want to scan that too. I'm not looking forward to another 2+ hours of additional scans. I'm still trying to get over the first round!

So I'm crying and staring at the results puzzled. I guess I'll call tomorrow to schedule more appointments. I'm sick of being a slave to making appointments, and what does this mean for me to be diagnosed with RA and OA before I'm even in my 30's! If anyone had any real medical info please help! I'm so sick of trying to find out info and being lead to sites for vitamines and such that at best are a placebo pill, at worst are just sugar to add to a diet I'm already trying to avoid sugar in.

I'm so frustrated because so much of what I read in regards to Ankelosing Spondolytis made/makes sense with my symptoms! So why and how is it that my scans show something else. I've never heard of a 20 something with OA. I'm so mad... how am I going to search for support if I'm in a crowd of one!?

Sorry this post is so poopy, I'm just sad, frustrated and not sure what to think. I still wonder if I shouldn't just find a different clinic, but then if I did that I'd probably have to have all these differet tests all over again!

More spondylitis stuff.

I found this article on the spondylitis association of America's website.

It had lots of interesting information. Including information on the course of pregnancy and delivery. I've already been thinking that because of my extreme back pain and possible fusion that If I were able to become pregnant, I would not be able to have an epidural and that I would most likely be advised to have a c-section. The article confirmed my thoughts with the following...

"Cesarean section is more frequently performed in patients with AS. Inflammation or ankylosis of the sacroiliac joints is not a mechanical hindrance to giving birth. Also, hip disease or total hip replacement does not preclude normal delivery. Thus the severity of AS seems not a likely explanation for the increased rate of surgical delivery. Sometimes the obstetrician prefers to do a selective cesarean section in a woman with inflammatory joint disease. It also occurs that the anesthesiologist will not give an epidural anesthesia to a woman with AS for fear of problems due to ankylosis of the spine."

I was curious after having read on the blog of a woman with AS that she was to receive an epidural and after four very painful and failed attempts it was discovered that her fusion was too great for the needle to puncture through. How horrible!

I still don't even know if I can get pregnant. I never have been and I am medically defined as infertile, so maybe it's nothing I have to worry about. But in nights like this, where my back pain is sharp and keeps me from sleep I often wonder if I even can be a mother. I do hear encouraging words that even if I'm in a chair someday that I could still be a supportive and nurturing mom. But a few days ago I had such a hard time getting out of bed in the morning. I felt like the tin man. And my sweet cat was crying at the door wanting to greet me, but because the door was closed he just sat there crying for me. I finally was able to get to the door and open it for him and felt really bad thinking, I can't be dealing with this and have a kid. If the diaper needs to be changed the poor child could develop a diaper rash by the time I'm able to hobble towards them. All this spiral of mental frustration isn't anything I have to deal with now, but it makes me wonder what I can handle, and what good I'll really be able to be? All this points to another thing about A.S. and women...

"People with chronic diseases are more prone to develop major depression. In fact, a British study showed that 37% of people with spondylitis suffer at least one bout of depression during a lifetime. Fortunately, more than 80 percent of people with depression can be treated successfully with medication, psychotherapy or a combination of both." ... One bought of depression!? Sure, OK, maybe for some. But I know my PCOS also follows along with depression so it's something that will most likely continue to cycle with me due to hormones, pain (lack of) management, or both. I've already had two rounds of medication to treat depression and am currently starting my third round.

I still need to schedule my MRI. But I'm waiting for AF. While my pregnancy test was negative a couple weeks ago, I haven't had AF for nearly 3 months now! I don't know why other than I was off BCP for about a month. Still, I'm not scheduling anything until dear aunt flo has shown herself. I hate waiting too. It's almost like the more I'm waiting the more I just have this feeling that I "know" the MRI is going to say I have the beginning of fusion happening. It just seems like the most logical explanation for the severity of pain in my back, hips, and butt. At least after fusion occurs the pain does start to be less, that would sure be nice! I really want the pain to be less!

I can't think of anything else to write about though. It's 3:30 and I so wish I could just be comfortable enough to get some sleep. Siggy keeps meowing that I should go to bed (he likes to sleep in my bed with me) But when I last laid down to try to sleep I just hurt more. I am exhausted, so maybe this time I'll be able to rest. It also doesn't help that I've had a migraine headache all day. I was nauseous, barely ate, and sat around like a fatigued lump. It was disappointing too, because I've really hoped that while Kevin was gone on business this week that I could get more done around here. I just need a maid brigade to clean the whole house top to bottom. I just can't stand it, and it's more than I can do, hence why it's gotten so bad to begin with. If anyone wants to come help me clean, I pay in pizza! Really, I'm very embarrassed about my house, but what can I do. As I keep trying to tell myself, with my mobility so limited and how fast the pain turns on with movement, there is only so much I can do. I don't stop, but then I get myself so wiped out that the next day I'm useless, and all I accomplished the day before was tidying up a little, cooking, and washing dishes. None of which are any where near finished either.

Well, I think I'll listen to Siggy and head to bed now.

Pain in the back.

Yesterday all I did was lay on the couch and watch TV, and I hated that, but it was all I could do. When I'd have to get up to eat or go bathroom it was such a task. So tonight, since I can't sleep I wanted to look up more about Ankylosing spondylitis, the type of arthritis I believe I have. I read the following on Mayo's website and it really makes me scared that someday I'll be limited to a chair. I already use my cane a lot, and standing for more then a few seconds is very painful!

From Mayo:

"Difficulty walking or standing. Typically, ankylosing spondylitis begins with soreness in your lower back. As the disease progresses, the affected bones may fuse together, rendering your joints immobile and causing a stiff, inflexible spine (bamboo spine). This can make walking or standing difficult. Your joints may fuse even if you undergo proper treatment — and once joints fuse, additional treatment won't help restore mobility. However, if fusion occurs with your spine in an upright position, you can remain more able to perform activities of daily living."

So I guess the moral of this story is if I want to live with a fused spine I better not be in the habit of slouching or I'll be fused facing my feet.

As a very random side note, Tony cat had a fused spine. It is amazing that he didn't have more pain and issues then he did because of it. When he had the x-rays that told us about his spine the doctor said it looks like the spine was always that way, so he was used to it. She said he'd live with it just fine, and I guess for the most part he did. Why can't that be the case for humans? Oh, maybe because we're supposed to live upright and mobile, or something. I'm pretty sure a wheelchair will be in my future, I don't know how soon or how long, but I haven't liked what I've read about AS so far. And worst yet, every time I go through the symptoms checklists most of them make sense about me.

These days, in addition to the lower-back / hip stuff, I'm also dealing with more breathing issues. I have a hard time getting a full breath. Allergies suck, and then on top of that by not getting good oxygen, I get tired, crabby, slow, and sore... This whole living with multiple health issues thing is a vicious cycle!

I just ran out of my last tube of Voltarane cream, I so wish we had this stuff in the states! It really is what seems to work the best for me. Then again the patches I got at my last visit weren't so bad either, so maybe I just need to call in for more of those. Still, I wish for arthritis cream, is that sad? I've been using Tiger Balm on my neck, but I started to break out from that. Sucks having allergies and sensitivities, a lot of over the counter stuff just doesn't work, or if it does it causes more problems.

I've also gotten my random rashes on my hands again, always on my joints. I'm going to try and sew myself some lightweight gloves. My dermatologist just thinks my skin is temperamental because it's so fair, I guess I should just accept that and shade myself anytime I'm in sun, I already have to because of my anti-inflammatory meds anyway. Still, I wish there was something I could put on my rash to make it calm down. I put the cream I got on, and it only seemed to make it worst. Yesterday I put on some very hypo-allergenic diabetic's lotion I got from a health and beauty fair and that really helped, but I don't know where to get this stuff, and because it's so specialized I'm sure if I did find it, it'd be super expensive.

I suck because I still need to schedule my MRI. It's almost a month now, but things have been busy for Kevin and work (and I want him there with me so I don't go nuts) and then there was the whole issue of I had to KNOW I wasn't pregnant before I scheduled it, so I've found that out so now I can schedule. That always is an issue for me. I've never in my life had a positive pregnancy test, so taking tests always feels like a bitter waste. But at least I have the answer now to set up the appointment. But then I probably will have to wait until the middle of the month because Kevin is going to have a business trip... Maybe I should have Mica take me, but I don't want to make the kids bored just because I might go crazy being in a loud metal tube for almost an hour. My nurse was telling me she would give me something to stay calm if I wanted it. I turned her down because for lots of things I can be brave, but the more I think about it, the more I'm not looking forward to an MRI, but I know I need it. When I had x-rays last year they didn't show anything about my inflammation in my hips and back, this should be better. The nurse said the problem with trying to find information out by x-ray is it only really says if something is broken, and I could tell you or not by feel if something was broken. I've broken a few fingers and this is a much different, and in some ways worst pain. With a broken bone, if you hold it just right, it doesn't really hurt, but with this, I have no comfortable positions. She saw me fidgeting a lot, and she knows I use a cane to get around somedays.

I don't know why I'm blogging about arthritis pain at a quarter to 4 in the morning, other than I've been feeling like life is really unfair lately. I'm really trying to figure out what God wants of me, I want to please HIM, but I'm not sure what I can do or how to do it. I feel my mobility get limited and it scares me. It's a pretty lonely feeling knowing I'm in my 20's dealing with arthritis, I don't really know anyone else my age with this. Yes, I'll be 30 in 16 months, but still, 30's is young too. And what about that. I'm so tired of telling someone I have arthritis and getting the typical "But you're so young!" response. Apparently it can affect all ages, and has chose to affect me now. And don't forget there are so many types out there. Osteo-arthritis is typically what people know about, and that typically does effect older people, but still, there are so many types, and they effect so many different ages.

I keep seeing these adds on the news channel for these specialty tubs for people with mobility issues, and my eyes get wide! I think, WOW! That would make my life easier! But the commercials, all they have are older people, and I'm sitting here thinking, is there something wrong with me that I'm in my 20's wanting this tub? I wish they would show the commercial with other people who'd need it too. I'm not trying to be ageist at all, just that I think when it comes to understanding arthritis and limited mobility ageism outweighs the reality of who all it effects.
The only commercials I see that show the broad gambit of who it effects are the commercials for the disease modifying drugs, but some of them are for other ailments too, like psoriasis and I can't remember what else, but things that more readily are accepted as being something someone of any age deal with.

I couldn't prevent getting this, it's all in my gene's as best as any doctor can tell. I didn't do something to cause myself to have such limited mobility, and I find myself having to remind myself that when people are shocked that someone my age could even have the mobility issues I do because of arthritis.

Well, since sleeping and laying down is the only way I feel somewhat sane I'm going to end for now. Sorry this is such a boring and complaining post, but it's all I'm really dealing with these days. I don't really have much else to talk about.

I censored myself.

The following is more of the post I made a few posts back, about my latest R.A. clinic visit.

I censored myself because of some hurtful words I was told recently, that 'you'll regret it when you finally do have kids.' To save from drama I'm not saying who said it, just that those words continue to sting, and it's been extremely hard talking to said person since.

Here is what I posted on my private blog that I didn't post here. I hope all who read can be mature and refrain from posting 'pat answers' that don't really help. I'm sharing a two-fold vulnerability of mine here. I hope my dear readers can respect that.

'I went to the Rheumatology clinic on Friday. Told my nurse about how Kevin and I are hoping to TTC in the next couple years. She wanted to know how soon, well, of course the sooner the better, right? Well, we start going over my meds, I now have things all different, new meds, lots of vitamins and lots that I've been taking that I need to stop taking. The crappy part is waiting a minimum of 6 months for these meds to change! Add to that however many months/years PCOS-caused infertility adds, plus 9 months if things go right... It just doesn't seem fair that the time adds up so much so quick, maybe we should just keep waiting for a baby to fall from the sky for us. I mean, we're too poor to afford to adopt, I probably have too many health issues to qualify for foster care as I'm almost disabled with my arthritis. I don't want to give up, but I feel like everything is against me.

But to grow our family has always been a dream, when Kevin and I were courting we talked openly and with great joy about how we'd parent our children. We spoil our cats, and know that when we finally do have kids they'll be treated much the same, because our love for them has been growing in out hearts and will continue to, for years.

I know this is all I ever write about. I'm sorry for that. It's also my biggest burden, the thing I pray about daily, the constantly fresh wound that keeps my depression active.'

So there it is, be nice. I'm in a poopy mood this week.

Blog migration, and boring ramblings about my R.A. clinic visit.

Yesterday I had a doc appointment at the R.A. clinic. Actually it was with the nurse practitioner who I like so much better. I'm going to always ask that my appointments be with her from now on.

She totally listened to me. Helped me go over my meds list to change things up. As much as I was hating to go (I've been thinking of just finding a new Rheumatologist), I'm so glad I went! She looked at the sores on my head (I've got some scalp sores that at first I thought were winter itch, but they haven't been healing) and she said they were from one of my RA meds that she's having me stop anyway.

She gave me some topical patches to try, I'm wearing one and it's working very well. I'm so tempted to just mummify myself in this stuff, but I've got to make the sample last.

I'm set to get an MRI soon. I'll be making that appointment next week. She was very concerned about my hip pain, I was squirming in my seat a lot so I didn't have to express it too much, though I did have to describe it. It was completely night and day compared to my last visit when I saw the doctor who basically told me with RA I shouldn't have back and hip pain and wanted to know if it's maybe just stress. So I stressed out this whole month knowing it wasn't stress, but wondering what the heck might be going on. The nurse agrees with me that it's probably some form of spondyloarthropathy, which is just a big fancy word for RA in the back and hips. Duh, I've been telling them I'm dealing with that for almost two years now! From now on it's Nurse Chris! I really think she's the most on top of narrowing things down for me. After the MRI we figure out if I'll need physical therapy or just start with the massage therapy alone. I've got to find that gem of a prescription. I mean I get to go for massages once a week with it, how could I loose that! I suppose I could have asked for that to be re-written but I'll have to call in a couple days for the patches to be written up too so I'll do it then. In the mean time I'm just so grateful that the first signs of spring are starting to show up! My pain levels have gone down a lot, even though the last couple nights my hips have kept me up, I am doing better. My hands are amazingly so much better that I've crocheted two and a half scarfs in the last couple weeks. I even brought my crocheting with me to the office. I felt like the other patients where staring at me, but it kept me busy, I know a few months ago I'd be jealous of that too. And when nurse Chris saw me crocheting she immediately said, "So, the hands are better huh!?"

Now 'bout blog migration. If you were to look at my blogger profile you'd see I have a ton of blogs. And really this is the only one I use. So my plan in the next couple weeks is to migrate content from those blogs to this one and link them together with tags at the bottom of the post. Then I can keep a link on the side-bar to have the topics all together still, but unified under this one blog.

Like with this post, I've been finding I'm doing more of my health blogging here and have ignored the health blog for a while now. Plus I just have been wanting to simplify ever since blogger introduced tags to posts here. Sorry to the less blog savvy people out there. I know I've just totally geeked out on you. Anyway, I don't think there will be too many noticeable changes here, except that my # of posts will increase.

Well, yet again I'm midnight blogging. I had gone to bed about 7 and then got up after 4 hours, I've been doing that tons lately, very frustrating. Anyway I should probably log off the computer, have a light snack and crochet until I'm lulled back to sleep. I just wanted to let everyone know an update.

I still plan on finding Kevin and I a new GP and to find Kevin and ear, nose, throat doctor, and an allergist and naturopath for myself. Anyone got any referrals for one in the Everett, WA area?

I also found this web-cast to be pretty informative in regards to spondylarthropathy. Also, this link was interesting considering I'm set to get an MRI soon.

Dreaming about arthritis!?

I woke up from a dream where I was at church and people were surprised I was there, I was rubbing my sore arthritic hands in my dream only to wake up needing to do that and saying 'Arthritis Sucks' out loud. I've been a twitchy, crampy, painful, blob of jelly today. I think I'm just going to take a muscle relaxant and try to get some real sleep as I obviously didn't get any rest last night. We're supposed to get several inches of snow today, my body agrees. Oh, and I had to check what the arthritis pain index was for today since I feel so miserable and here is what they say...



Boo, hiss, I want a refund... or a new drug, or sleep...

not happy

This is the way the last two days and the next 5 days are predicted for the arthritis index. I was a useless zombie woman today! I swear my cat thinks I sleep as much as a cat does. Any time I head towards the bedroom he hops on the bed wanting to cuddle... well, I suppose I could just be spoiling Siggy...

Wondering how I'm feeling?

The arthritis index has been unfortunately extremely accurately close to my symptoms. When it's saying very high or extreme I nap until it hurts too much to lay down anymore, then I get up, act zombie woman, eventually crawl back into my hole, and basically am useless, and I hate it.

Kinda feels a bit like the arthritis index is like a mood ring, but at least it puts some scientific validity when I don't wash socks even though the only clean ones in the house are for making sock monkeys. :-)

I'm in decent spirits even though it feels like my right leg wants to pop out of my hip socket. Someone nag me about that until I get my Rheumy appointment rescheduled. Oh, yeah, I missed that appointment last week because I was in too much pain to sleep during the night, and then I was asleep all day. < < sigh > > oh, well. Hey, at least what's wrong with me is known this time.

Now if only it would stop raining, go back to snow, get good and icy and just stay a winter wonderland, at least I'd have something pretty to see out the window. It's slushed all night so the dusting from Christmas is still sort of out there... but mostly just an icy mush.

Well, I've made enough posts for today, maybe... so I'm logging off and heading to be at 8 a.m. I'm all messed up.

blah.

R.A. -> Ouch, cramp, burn, stiff, limp, sleep.
+

=
I have nothing interesting to blog about. This is my worst post ever. I need the housekeeping magic faries to visit.

I'll try not to complain on my blog tomorrow.

It is tomorrow.

Worst midnight blogging...
Taking my dopey self to bed, even if it means starring at the dark room until the sun comes up...

Flooding

I just wanted to calm everyone's fears. I'm doing fine and I don't see any flooding near my house. However last night was lonely as Kevin had to stay with family in the next town over. The road up to our place was flooded over and even though he was in the truck he couldn't drive through it. That's the bummer of living at the end of a country road without any other route. Yesterday he only worked at the craft store as his regular job had closed the office for the day. All the storm sewers were backed up yesterday and the roads were not drivable, he was able to get to work today though. Please pray that the rains slow down so he can come home tonight. It's been both clear and rainy at times today so it's at least lightening up, but I still fear the roads might be a mess.

I think the roads have improved some it seems like the neighbor across the street left for work today.

All this so soon after having had snow on the weekend has really made my RA painful. I'm taking lots of naps. I think I need to take another one now.

I just wanted to update everyone to let you know that we're all safe. Most of the major flooding seems to be at the lower elevations, and in the south western part of the state.

I'm wearing pants I couldn't wear since I was 24!

That's a loss of 26 pounds since June! I wish all this weight-loss would make my RA get better, but I guess the constantly changing weather won't let that happen! At least I'm grateful that between Byetta, and Metphormine that my body is doing what it's supposed to with food! It's amazing how a disease like PCOS can make so much happen one way, and how by taking the right medication to treat it I can have my body do the things it's supposed to! I hope things continue to keep going this good. Maybe soon I can wear the clothes I bought when Kevin and I first got married, those are just a size or two away!

Today, I'm pooped.

Things I did today

Talked with Mica about meal plans for Thanksgiving.
did 3 loads of laundry, including folding.
did 1 load of dishes and put away.
made potato salad
made coleslaw
answered blog comments and e-mail
watched the news
checked for the mail (no mail yet)
took pictures of snow

It doesn't seem like anything out of the ordinary, but it's 4 and I want to go to bed! This winter isn't being very good to me, and it's not even technically winter yet.

In other news we've been able to see lots of pretty snow on the hills outside our window. Enjoy! (click picture to see it larger)

Allergic Reaction!

Update: photo added Dec2nd. All is clear now, this was from back then.

I got a prayer request.



Well, I'm allergic to one or both of the meds I tried yesterday. Skelaxin and/or Plaquenil.

I woke up with a painful puffy face at 1 in the morning. It's now 11 and my face is still very swollen. I took 50 mg of Benadryl and that stopped my watery eyes, but my face is still very swollen, itchy, hot, and tender.

I took Skelaxin both at lunch and dinner last night, and took Plaquenil at bedtime.

This adds to my intolerance to most antibiotics, and Spironolactin.

Monday I went to the arthritis clinic and needed to get more meds to treat my RA, I took some of it during the day monday, and then another one at bedtime. At 1 in the morning I woke up with my face so swollen I couldn't hold my eyes open well. Today I've mostly been sleeping because I'm taking as much Benadryl as possible until the swelling goes down.

It hurts and burns, and I'm just generally uncomfortable and unhappy. All this after I JUST got over a cold that had me down for a couple weeks. When will I ever get ahead, the house looks horrible! I wish I could be a better housewife.

Anyway, sorry this is so whiney, just haven't felt like being on-line much lately. When I am up to anything I'm either working on crafts to sell, the cookbook, or house-chores, but I haven't even been up to much of that lately either.

I go back to the RA clinic a week after Thanksgiving so hopefully I'll get something better then. Also, hopefully then I'll get the script I was promised for therapeutic massage, I found I should be able to get that done here in Sultan, which would totally be cool! Or I should say hot, since it involves hot rocks!

Anyway, going to crawl back into my hole, hope everyone is doing better then I am.

Hugs to all,
Crystal

UPDATE 11/15/07 -
I'm doing a bit better(as far as the allergy goes), but it also made my cold come back full force so I have tonsillitis, stuffy nose, and my back aches. I feel awful, and it sucks too because today is Kevin's birthday and I wanted to make it special for him. Instead he gets a sick wife.

Today's rhuemaqtology visit.

I had another visit with my rheumatology nurse today. She says my groin pain is my arthritis. Yay, me... another area effected. Just a few days ago my grandpa had his hip worked on, how soon 'til that's me. As depressed as all that sounds, my mood has been fairly good recently.

New muscle meds today, as well as another RA med. With the colder weather these days we'll see if that helps. Apparently my labs say my sed rate is still high. I've got to find that article on women with PCOS having a hard time getting their sed rate down... if you know of one drop me the link in my comments.

Also need to find an eye doc... guess that goes on the to do list.

Not much else really.

I've been on Beyetta for almost 2 weeks, I'm not having the nausea side effect so that's good. Still am having a hard time loosing anymore weight, though the stuff the nurse gave me might help along those lines too, it's be nice if I had that side effect.

Well, I'm off to have lunch and take my first pill, here's hoping it'll do something. She poked and prodded me so I'm pretty tender, I was already sore before too.

Should make an appointment with GP soon, no other pending appointments.

Rheumatoid Arthritis - information.

I found a great site for explaining how R.A. effects the person who has it as well as tips and stragegies to get through the day.Rheumatoid Arthritis info page.

I found this particularly useful because sometimes I find I do push myself too much because I want to see a clean house, rather then to let things go for a bit or to ask for help. Today has been a big time fatigue day. I'm not particularly in pain (aside from my arms still itching from the rash that popped up last week.) so I keep feeling like I'm just being lazy, but then when I go to work on something I feel like I could just fall on the floor and sleep! Every little thing is a big project today. I did a load of dishes last night and I've been putting it all away in short bursts today. I wish it was just done, but standing up for long today is really draining.

I'm really looking forward to the 24th. Kevin and I decided to go to our first VolksMarche then, and I really wish I could know I'll have a good energy day then. It'll be out in Mercer Island, WA... a St Patty's Day marche, a week late, but it'll still be a fun event. I look forward to it. I already know that regardless of how I feel that day I am packing my pain pills and my cane, as well as water and some trail mix or some such.

I just thought I had a burst of energy so I set out to clean the toilets. I only got one done, and towards the end I noticed my hand getting really stiff so I didn't get to the second one. Maybe I will before bed, but right now typing is about all I can handle.

It just puts a downer on my day when it's colorful outside. Sunshining through rain clouds. It's so pretty out. And It mentally energizes me, motivating me to get some "spring cleaning" done, but then I go to do something and I just am tired and can't get it done. I'm not mentally derpressed, but I feel very physically depressed.

Dealing with my auto-immune disorder.

I've been dealing with a flare-up again. No where near as bad as when I was flat on my back, but I'm super tired and have been using my cain again. It started with sharp burning pains in my right foot, and then it swelled up all puffy on the bottom between my instep and my heel. I spent most of the weekend on the couch sleeping or watching TV. Oh, and this time I'm getting this annoying rash on my arms. It feels like I have a sunburn and yet I had on a heavy coat the last time I went outside. I had the rash once before, at Christmas. But it's different from the rashes I've had in the past. The sunburn feeling is something I'm not used to. I've been using oil on my skin because it's a little dry too, and cold wet wash clothes, they both sooth a little bit, but only temporarily.

What is frustrating about it all is that I just had an appointment on Monday with my Rheumatologist and she was happy that things have been working well with the meds she has me on. I don't think it is the meds, or that they have failed me. This flare-up is no where near as bad as when I couldn't get out of bed, and I was advised that I may still deal with flare-ups from time to time even with medication. And a few weeks back my dermatologist was saying that she wants me to come in as soon as I get a rash again, but when I called to make an appointment they don't have any openings until Wednesday next week. Maybe it'll still be there for her to see, maybe not. I plan to take pictures to bring into her this time.

Now I just wish there was a way the house could get picked up without me having to do anything. My grandma comes to visit in a few weeks and I'd be embarrassed if anyone saw the place right now. I am very grateful for my husband who has been such a big help! I'm glad the worst of this was on the weekend. He really took care of me. Thanks honey!

Things I'm thankful for/QuiverFull part two.

I had a quiverfull mom read my post and respond. I really appreciate her heart and what she wrote. I don't hold anything again those who are so blessed to have so many children. I don't envy them, I simply would see my life as blessed too if I only could have children of my own. It makes me have many questions... I know I'm not cursed to be childless, but I do know my pain is real and I stuggle with it making me bitter. I wish so much to raise kids. But for me, getting there will be a much slower process.

Right now I know of MANY couples who are expecting. I very much want to be happy for them, and I am, but it's very hard to share it outwardly. There ferility rubs in my face my own infertility. It's not that I wish infertility on anyone, it's just the wound is so easily rebroken. Just about the time I find joy and hope in the life I have, sorrow comes in and tears pour down. My heart aches because it isn't just that easy for me. On Thanksgiving weekend I heard of another couple expecting and my own reactions couldn't be controled. I got choked up, ran to the bathroom and siting on the bathroom floor I held my head in my hands perplexed as to how everyone I know can so easily make the dream of a family happen and for me it's just a distant dream. Even now as I write all this I'm choked up again. If it wasn't for writing the tears would probably be falling again.

It's interesting to be reflecting on all this now. After we've made our initial move to start adoption. I do have hope and faith. I see God providing and I know this journey is begining and I look at it with eager and accepting arms! The pain is still there, and it's deep. It hurts easily, but I know that my dreams will happen. It's just a matter of time and a different route the others.

I just took a little break while writing this, and found it was profoundly important to me and relevent to this post. I heard about this show called "Bringing Home Baby" and while I typically avoid shows like this I watched this episode that just aired because it was of a mother who has Rheumatoid Arthritis. That is one of my many health issues. I could really relate with her, the need for naps during the day and dealing with weakness that comes and goes and pain that comes and goes are all things I deal with. I admire her for being able to ask her mother or mother-in law to help with things, as well as her husband. It's hard enough to do the day to day things as it is (living with R.A.), let alone to take care of all of babies needs too.

This last summer, right as we were moving into our new house, I had a really bad episode. It was after we had spent time in CA visiting family, and after the stress of buying a new home and having to pack our belongings in a hot and tiny apartment. My body was stressed and overwhelmed. I cought a terrible cold while in CA and while I was taking one day at a time, it was all just too much for my body and my body reacted. After we moved in I was flat on my back. I slept more then I was awake, all my muscles twitched or cramped and my wrists were virtually useless. I had no grip in my hands and any ammount of exertion made my body burn and tighten up. It's what brought my doctors attention to the many aches and pains I have, and that it was more then just my size or activity/inactivity that was causing my pain. My bloodwork showed more issues and put a (partial) diagnosis to what I'm dealing with (I have Rheumatoid Arthritis and my Rheumatologist is still trying to figure out if it is simply R.A. or R.A. from another auto-immune disorder.) I'm now on medications and vitamines. I'm able to move so much better. I now have to avoid getting sick at all costs, but I've found that when I am sick I'm able to get better faster. Amazingly with addressing my R.A. my asthma, and allergies have improved too.

I don't see myself as an unhealthy person, just someone who has health issues. And as I remind myself that it takes me so much to keep myself healthy and get things done around the house, that I have so many naps, and doctors appointments, and expenses like canes, and braces, and face masks, and so on I actually am very graetful that I have this time to care for myself and learn how to keep myself from having times again of being flat on my back.

It's just another journey I'm on... the journey of keeping my body healthy, with all the health things I deal with. I know I need more time to take care of myself and to do the things I need to. It's not an issue of selfishness, it's an issues of learning what my body needs. For this I am greatful that my life is just me and my husband. I couldn't imagin going through what I did in the summer and dealing with children at the same time. I now worry about how when we do have children how this will effect them. They'll have to learn to help mommy with things and such, but I don't see myself as handicapped or inable to care for children, just that I'll need to have ways of dealing with things.

I'm grateful for where I am. I'm thankful for my doctors who understand my body and are taking care of me and making my days better. I'm grateful for our house that is still new to us half a year later. And while I have boxes still to unpack because it takes me so much longer to get things I marvel and enjoy seeing each day this place be more and more ours. I've been focusing a lot on things that are good in my life lately, its something that has been hard for me a lot, but right now it has been coming easy!

Just call me the loopy Lupus lady...

So yesterday I met with my doctor and he agreed with my Rhumatologist that Lupus seems to be what I'm dealing with. He gave me some pain pills which I was hesitant to take, but they're supposed to be better for me then the Alive I've been taking most days and he had a letter from my rhumatologist who was suggesting that for me too. He also gave me some skin antibiotics that are supposed to be more heavy duty then the over the counter kind. It's kinda gross, but I've had these moles on my neck as long as I can ever remember and this last week one of them just decided to split open and get infected. That's what I deal with these days. When I catch the same cold as others I'm out for weeks when they're out for days, I get a cut or scrap and it gets infected. But looking at it through the eyes of starting to understand Lupus it all is starting to make sense. I'm not unfamilular with this process in understanding health issues because I dealt with a simular thing when I was diagnosed with PCOS. From what my doctors can tell the two don't seem to be related. There are a few ways they could be, but it's very slim. I just happen to be someone who has both. And the strangest thing is they are both considered "orphan diseases" meaning they're rare and hard to diagnose, and now I'm looking at having been diagnosed with two, its just kind of weird to me.
So yesterday was quite the roller coaster. During the morning I kept hitting time black holes or something. I'd look at the clock, think 5 minutes passed and look at the clock again and it would be 45 minutes later. Amazingly I still made it to getting the car to the shop for an oil change and some brake job. I walked from the auto shop to my doctors office and it felt nice, the weather was so nice. It wasn't too hot, but it was sunny and clear.
After the doctors appointment I walked to 7-11 and got some water and nachos. Not a great choice, but I needed to snack on something. As I sat at a nerby table I could feel eyeballs watching me. It really made me self concious about eating in public. Then this stupid jerk shouted out at me, "Hey Shamoo!" I didn't move. I was livid and insulted, but I didn't make any outward acknowledgment. Their light changed and they drove on, but it just really ticked me off. I ended up tossing half my chips (they were too salty anyway) and I walked on to the bookstore and waited for Kevin to come get me since we're leaving the car at the shop. The comment really didn't make me mad because of me, but because I had such a hard time believing someone so stupid actually could exist! I feel sorry for them and I kept thinking about how they just weren't raised right.
After all that happened we stopped in Monroe to get some dinner and while I was in the parkinglot my wallet fell out of my pocket. I never put my wallet in my pocket for that very reason, but yesterday I did. I came home to hear a message from a good Samaritan who had found my wallet and wanted to know where to meet me to return it to me. It just seemed kind of strange to me that I'd see such a jerk of a person and such a kind soul all in one day. And all on the same day that I started getting some important confirmation about my health.
So yesterday used up all my spoons, and I think I ended up borrowing against today's spoons, which with having walked approximately 7 blocks I'm not too surprised. I'm just going to kick back today, read my new book and watch the news.
I'll know more next week after I meet with my Rhumatologist again. I look forward to making an action plan with her as to what I need to take and what I need to avoid. I thank all of you for your loving words and prayers, it means so much to me. Thank you!

I've been trying to see if anyone else has both or if anyone has noted any connections...the only thing I've found has been this conversation.

Blood protein issues #2

So now it seems like it's not so much the blood protein's the doc is concerend about but my inflamation. I can't remember the thing in the blood that shows that, but with both tests that was up. In my second blood test my blood protein was back to normal, so he said that was my cold, that it was a virus cold. So that's cleared up. But what isn't cleared up is my fatigue, fall asleep hands and some other symptoms too.
I went to About.com and found a "Do I have M.S.?" check list, with all I was able to check I'm going to talk to the Rhumotologist when I see her again next week. Oh, yeah. I've seen her once already, she said I didn't have enough pain regions to be considered someone with fybromialgia (not what I thought was going on anyway.) but that something is happening so she did some labs and we'll meet next week to go over them.
Also the blood tests I have with my regular Doc showed me as being a bit anemic, which astounds me since I'm a low carb, eat the protein kinda girl. All my doctors have been asking me now if I'm veggitarian. I may have over worked myself with our latest house move, but I so don't cut the meat out, ever. Just imagin how anemic I'd be if I did! That alone seems proof enough that humans are supposed to be meat eaters. Anyway, so I'm taking B-12 and iron now, I'm sleeping a little less (10-11 hours instead of 12-13.) but it's still a lot! And still never very restful. Especially when I wake up to both hands icy cold, stiff and asleep. Doesn't matter how I sleep either. Worst seems to be on my side so I toss to my back, but then my back hurts if I sleep like that all night.
Well, that's the update so far. Hopefully I'll know more after my next meeting. I've basically ruled out anything PCOS for all this with the Endocrinologist, but the Rhumotologist said there was still a chance it's something else with my thyroids. She gave me a more detailed neck exam then he did, I thought she was going to choke me! And ordered some of the labs to look into Thyroid things since I basically didn't know what he tested me for, and it would take just as long for her to get my labs as to get the records transfered and then possibly find out a test she wanted ordered wasn't done in his. And then it would all take longer.
So 2 and a half weeks later I still don't know what's up. I'm still nervious, but I'm not the crazy kind of nerveous I was before. I'm pretty certain that the Rhumatologist is going to find out what this is all about and care for me. She seems really invested in her patients. I'd totally recommend her to anyone needing a rhumotologist in the Seattle Bellvue area!