A birthday wish

My 30th birthday is coming up soon and something I'd like is to raise funds for Ankylosing Spondylitis Awareness. You can visit this link to join in my fundraising as part of my birthday celebrations! Thanks in advance to any and all who help participate!

An important video for first responders and A.S. patients alike.

This video is for first responders and A.S. patients about being prepared for how to handle an injury with someone who has bamboo spine (a fused spine), or brittle spine. It also is a good reminder for those of us with A.S. that we should be wearing a medic alert bracelet in case we are not conscious when an emergency happens.

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.

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!

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.

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.

Of pot roast and pot pies.

Living with chronic illness means that there are a lot of times when we eat prepared meals. It's not something I'm proud of, but sometimes I need a little help from the grocery store, the nights I'm not well enough to stand in the kitchen and cook.

I always make way more than we need each time I do cook so we can have leftovers, and I try to make things we won't get tired of or that I could quickly adapt into something else later.

Anyway, so last night, the highlight of my so unproductive week long flair up, was making pot roast. It wasn't the greatest, and I certainly noted a few things to do different next time. Didn't matter to the Hubster... He devoured his entire portion and praised me for it most of the evening. Even willing to have it as seconds tonight. So tonight I made us pot-pies to go with our pot roast. By 'make' I mean I thawed out and baked some brand name pre-made ones. Now, mind you, we've had these before, but normally as a snack, not eating them with something else. As we ate, we wondered how we ever ate these before! What was it that was in these that made them so completely bland, and the roast I made so flavorful. It felt like a magic trick of the taste-buds. I got to thinking, hey, I'm not that bad of a cook. Really I know I'm not, but I'm trying to remain humble.

Needless to say, I'm thinking about buying more freezer containers and making even more meals ahead on my good days, this is just pathetic. It was strange too to recall times when these little pot-pies have tasted so good and how disappointing they were tonight. It was also quite shocking to see that this particular brand has now taken to supplementing the meat with soy... no wonder the meat tasted gross and was so un-naturally soft. We agreed that Marie Calendar's is probably the only pot pies we like anymore... and even still, we probably should have me make home-made stuff ahead of time, as much as possible from now on.

This is an honor and a frustration though. I pride myself in becoming as best of a cook as I possibly can, so I'm always happy when I hear my food does please and satisfy, but as someone who most days doesn't have the energy I need to get it all done this also becomes quite a chore. I want to make us the food that is best for us, but if I'm too sick to sit or stand at the stove what do I do? And yes, I sit... I've bought a few different bar stools at different heights and it's a definite help with a lot of meals. Realistically though this isn't always a help, and I need something more.

Recently I've made some friends on line who also have Ankylosing Spondylitis and I was talking with one of them on-line last night, and she convinced me I need to invest in a walker. She was saying it's the best things she's done for herself. Believe me, it's something I've seriously considered quite a bit this last year. If it's something that helps keep me going on the bad days than that's a good thing, I think. There is now said walker on my amazon.com wish-list.

One of the hardest parts about chronic pain is that there are bad days, worst than bad days, and OK days too. And a lot of times people look at someone with a chronic pain illness and think well, their good days are how they are, and they just have to push harder on the bad days, and really that you've just given up. First of all, that outlook causes emotional pain. Daily life is such an ordeal with these illnesses, I know all my friends with chronic pain illness, and myself included, would give darn near anything to feel as strong and healthy as we once did. It does us no good to simply act as if we're just lacking a needed push. It makes us feel misunderstood, pained, and frustrated. Believe you me, if this was a matter of willpower, it'd be a different story.

The blessings of networking with others on-line & sharing these frustrations is that as we write, we share ways of sharing, giving perspective, and maybe, hopefully a new angle to share with others how our life is different.

I want my healthy friends and family to read this post by a fellow A.S. sufferer because as I read it I kept thinking that what she was writing was a cliff-notes version of my blog, and maybe hearing her share her words could give you better insight into my life. Yes, it's from her perspective of this disease, but I didn't read anything that isn't what I'd say, or have said.

This road is tough, and I need love and support from those around me as a result.

I need to honestly say that I'd love and appreciate meals brought over, this time of year especially. Don't break your bank, but home made, as opposed to pre-made is so much better, and I hate when we settle. I don't want to be a burden on anyone's grocery budget though.

Well, I need to start heading to bed. I've been sleeping about 11 hours on average lately, and I have women's fellowship tomorrow and don't want to miss it. At this rate I'm looking at taking a shower after I log off, crawling into bed, and when I roll out of bed tomorrow head on out to the meeting. It's at 1:00 PM. Now before you say, "Oh, I wish I could sleep like that!" Please know this is no luxury! I'm not getting rest at all these days, and much of that time is spent laying in bed praying the pain will go away enough to sleep well, only to dream about the pain, and wake up not rested. I hope tomorrow will be better, but I have to look at realistically how this week has been so far.

Good night blog friends, and blog readers. For now, I try to sleep.

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.

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.

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.

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!

Spondylitis sucks the life out of me.

On the 21st I go to my first physical therapy appointment. Here is hoping doing so actually affords me the ability to enjoy some of summer! I'm finding on hotter days my hips get very inflamed. My last bad flair up was when we went to California in May, I'm sure the heat doesn't do me any good. On the hottest days lately I'm very stiff and weak. I'm trying to keep ice packs handy, I guess it helps some. Mostly I just want to sleep. I slept 11 hours last night and then a several hour nap in the middle of the day! I feel like I'm not living when the need to sleep is this great. A.S. is to blame though, the nights I can't get into any comfortable position at all really make the sleep debt add up. I think the most annoying thing I'm currently dealing with is when the hip inflammation makes me feel like I need to pee every 20 minutes!

I am looking through a support group on Facebook for those of us with Spondylitis and I thought I'd save a few quotes from other people. I find that by reading how others describe dealing with this pain in the butt that I can relate and not feel so alone in this disease.

"Hi, I have been living with AS, Rheumatoid Arthritis and Reiter's Syndrome along with all they bring to your life, for 30+ years. I have found out one thing. You do not find a cure for this disease, you only manage the symptoms enough to give you a decent quality of life."

"Hey, I'm 25 years old and was diagnosed about 10 years ago with AS. I've been on most meds. There have been times where I cant get out of bed on my own, or even put my own shoes on. I'm currently on Remicade treatments about every 4 weeks. Remicade really has changed my life, mostly good, but some bad. Since it weakens your immune system, somebody can breath on me the wrong way and I'll get sick, but I guess thats the price you pay when you don't have to walk around in pain 24/7."

"I have AS. It was diagnosed as a slipped disk from my very early 20's until last year (when I was 33yrs old). My spine has fused in my neck and thoracic vertebrae. This is a terrible disease and my heart goes out to anyone dealing with it."

"AS sucks and is ruining all the fun i could be having playing rugby. what can i do before a game so its bearable to run and tackle? i don't care about afterwards...just the game..."

"After some test they found out i have elevated inflamtion in my S.I joints. They then told me that i would have to try different medications to tery and get rid of it. Most of them made me sick to my stomach and i believe one of them was recalled. My mother and I were becoming increasing upset over nothing being done and my mother started looking up disease that it could be. She found AS on the internet and pretty much diagnosed me before any doctor. Just as the Rhumetologist was about to give up they sent me in for a C.T scan. On the results they found erosions on my S.I joints. By this time my mother and i knew that they couldnt have formed over night and must have been there for some time. Once they had discovered this they suggested i start taking Enbrel or Humira.But as a teenager i didnt think i could handle it myself and now i am currently on remicade. It kinda of upsets me how these doctors can give up so easily and puch people to the side."

"I think I hurt everywhere tonight :(
Back, legs, ankles, feet, hands and wrists.
I dropped somthing on my foot at work and I think everything decided it needed to hurt too. I am very stiff tonight after resting from work. My son said I sound like pop rocks whenever I move :("

"I don't mean to sound like a sap, but I'm just wondering if anyone has any suggestions to deal with the whole depression issue of AS. I mean I wouldn't call myself clinically depressed or anything, but during those flare up days, it just seems so hard to deal with emotionally. I'm currently experimenting with different types of meds as prescribed by the rheumatologist, but until I find one that works, I have bad flare ups somedays that seem almost too bad to handle. Any suggestions on coping with this?"

"Dave,lost my job because of spondilitis last year,a very messy affair resulting in a tribunal next month.
Anyway all I am claiming at the moment is incapacity benefit,which is not worth a carrot.Finding a job that I can pyshically do I proving more diffucult than I thought.
Here's to a sucsessful tribunal."

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.

Back pain haiku

I've been productive today, but still in loads of pain. I'm looking for an orthopedic doctor, as well as physical therapist. Anyway, I thought maybe some creativity would put some humor to what I'm dealing with so here is my silly haiku, I don't think it's very great, but it was fun to work on. An outlet.

My Back Pain Haiku

Grit teeth, cringe, back pain
it never ends, always there
raw pain, kills my mind

So, what do you think? I'm a silly-head, huh!?

Three titles could go here.

I couldn't decide if I should focus on finding out about PCOS issues from my rheumatologist, or if I should focus on knowing that as far as my RA meds go, I've had them out of me enough to TTC, now I need to get my inflammation levels DOWN, something I've been struggling for ever since I started being treated for arthritis. BUT! WONDERFUL NEWS! I don't have to scrimp and save and only use Voltaren when I'm beyond desperate anymore. See, I was introduced to it several years ago when I was in Czech and found it to work for me amazingly well. My dear grandma has kindly provided me with tubes which I try to conserve, but wish I could have it as a regular prescription here. Well, after years of waiting the FDA finally released the cream form for use here in the states! YAY! My NP and MD said I'm the first to get it from them, they gave me a trial tube, so now I'm keeping one in my purse, and they gave me a generous prescription for this wonder cream! I went to get it filled and the pharmacist told me I was the first person he's filled it for and that the pharmacy only had one tube, so I'd have to come back in a day or so for the second tube I was supposed to get. But all this made me feel cool! FINALLY! I know this stuff works for me, so hopefully between that, and having a more rigid schedule with my oral anti-inflammatory meds I can get my sed rate down enough to get the go ahead from my RA MD to call the GYN MD and make the plans to TTC. It's feeling better! There is some hope here! At least from the RA end.



Now, as far as my arthritis goes, the Osteoarthritis in my hips is so minimal it shouldn't interfere with a pregnancy, my hips should still be able to handle it all. As far as the results that the SI joints looked fine on the MRI scans, the doctor, nurse and I all agree that it doesn't rule out spondylorathropy because of the symptoms I have, and that it's very common for nothing to show for the first couple years. And that also makes sense because when we first checked my hips we saw nothing, and then recently the OA was visible. I've read this to be common for many others on various blogs and message boards too.

The MRI results were even more of a mixed bag than I thought by reading the letter I received initially. So we still suspect Rheumatoid Spondylitis, found out additionally about OA, AND with talking with the nurse they found cysts on my ovaries. So I'm sure the gynecologist will want those to clear up first, or they may prevent my cycles from happening properly enough to TTC. I was slightly crushed to know the MRI inadvertently showed cysts, but not surprised, I mean it is a part of poly cystic ovary syndrome, and I've known I've had that for years. I guess now I need to pray that my hormones will improve. I know it's keeping my depression active, as well as making my blood sugar fluctuate a lot. I haven't been tolerating my full dose of metphormine so I haven't been taking as much as I'm prescribed, but it looks now that I need to suck up the unpleasantness and go back to the full dose so I can get my PCOS better under control. It all seemed interesting to be talking about that at the RA office. But I felt like my nurse and doctor were knowledgeable enough to treat me well then.

The visit there was over an hour! The nurse is a new one, the gal I was working with isn't there anymore it seems, and the new nurse seems to be just as good in my opinion. She took time to get all the details I could give her, and she gave me a wealth of information! I ended up visiting with the doctor as well in regards to the whole TTC while on certain meds issue. We're hoping that if I can get my inflammation down again that I can also get off the bio-logic injections, they can cause birth defect. So if the time comes that the Gyn gives the go ahead to TTC but my sed. rate is still too high I'll have to go back on prednisone. We're all hoping that I wouldn't need to, I gained 20 pounds the last time. I was able to loose it all after I was off it, but to gain weight while pregnant wouldn't be healthy either. Basically the issue is that if my total body inflammation continues to be an issue, my body stress would effect the growing babies body stress too, and that wouldn't be good. So, in the mean time I have my new cream, new plan on how to take my current meds, and referrals for both an orthopedic doc and physical therapist. I was bummed to find out the physical therapist in town doesn't take my insurance anymore, so hopefully there is someone in the next town that can or I'll be stuck driving to the city (Everett) for treatments.

OK, to recap...

* I still probably have diagnosis of Rheumatoid Spondylitis.
* I also have rheumatoid arthritis.
* I also have osteoarthritis.
* I also have cysts actively on my ovaries.

What a mixed bag. I pray the cysts pass on their own without issue. The one time I had one rupture it was so painful I finished the bottle of Vicoden from when I had oral work done. If any of these cysts decide to rupture, I'll be headed to the ER in the next town at the general hospital, I don't like that, they didn't take care of my father in law in a timely manner when we took him there a few years ago. He was/is fine, but we were put off by how slow it was. I guess it's the trade off of living out in the country. I do wonder if I'd really need the ER if the same as last time were to happen. I'd probably be OK to wait for daytime and go to the urgent care near Kevin's work, our doctor is there, but they don't have all the same resources. Well, I don't need to plan a course of action here, it's not always true that they rupture, the body can amazingly absorb them pretty well too, so I'm hoping that'll just be the more pleasant case. None of the cysts are so big as to require surgery (at least for now), for that I am grateful.

I was sent to get my hands x-rayed to make sure my RA isn't causing any damage there still. And with the visit taking over an hour it ended up being lunchtime when I was done there. Where all the medical places are in Bellevue there is only a Burger King and Whole Foods. I didn't want junk for lunch so I went to Whole Foods. OH MY GOODNESS! It is so expensive! I mean I've shopped at Whole Foods before, but it's been a while since that is the closest one and it's about an hour away. Anyway, 30 some dollars later and I had lunch, a couple reusable shopping bags and a reusable feminine pad, something I've been thinking of trying. I LOVE the shopping bags! We've been buying the reusable ones when we can because we're sick of always having to get rid of plastic bags, but we've found that the reusable ones that most stores sell end up starting to bust the seams after a few uses. I have several sitting by the sewing machine waiting for me to mend them. Anyway, the large ones I got from Whole Foods seem VERY sturdy, they're made with two layers of material so I think that will help too! I bought two bags, maybe in a few weeks at my next visit I'll pick up a few more.

I ended up being out so long that after I got my x-rays done it was almost time for Kevin to get off work. I called him, he called his car-pool buddy and I ended up being the one to give him a ride home. I sat in the parking lot at his work for about half an hour, which I totally loved. The day turned out so nice. It was cooling off as high clouds were rolling in, with the faintest amount of rain, and the birds were flying around and singing, I just sat and took it all in while I waited. It felt like such a blessed time of peace, a real gift from God, just for me!

After I picked Kevin up we went grocery shopping and home and dinner and bed, so I didn't get to work on my crafty things yet, but Tuesday is looking pretty calm so I think I'll work on things in the morning. I'll also check the veg starts and see if they revived from the rain after the heat, I know I did. If so I'll tend to them.

Well, I've had very little sleep lately, so I'll end here for now. I know I wrote a lot of abbreviations. But I think I covered them all in context, drop me a comment if something was confusing. Writing at 3 in the morning doesn't make me the most coherent.

So to recap, please pray about my cysts, right now those are going to be my biggest hurdle with trying to conceive. Please pray that I'll get my inflammation down enough, gain more mobility again, and that physical therapy will prove to be of help. It'll still be about 4 months according to the doctor before I'd expect to be able to move as freely again. It'll take time for physio to work. We hope that the OA won't continue to worsen and stay relatively about the same as it is now.

Well, I think I got out everything I needed to write about from the day. I'll head back to bed. I was sleeping well until the cat started to climb the screen so I had to wake up to kick him out of the bedroom. That woke me up enough to want water, and then the day started rattling in my brain so I thought I'd just get up and share, but now I'm ready to go back to bed.

Good night friends, and please pray with me. Thanks!