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.