Tuesday, 26 June 2007

What is RSD?

Let me see if I can give a comprehensive answer to that question. I was first "discovered" and named Causalgia by a doctor during the Civil war. He saw that some of the soldiers he treated had pain that greatly outweighed their injuries and he started studying it. It's not very common, but it can start with something as minor as a scratch, or even have an uncertain beginning. To me one word comes to mind... Pain! Up until very recently there have been no tests to diagnose the disease. All doctors have had to go on is excessive pain, swelling, extreme sensitivity, discoloration, and a few other things that could all be caused by something else. There is no cure, though I've been told and have read that if it's caught within the first three months, it might be possible to reverse it's development.

Since it is hardly ever diagnosed within three months of starting, that's not much of a chance for reprieve. I can't remember the average number of doctors it usually takes to diagnose RSD, but I know it's high. My own case took four years and five doctors before I finally had a correct diagnosis. Not that the signs hadn't been there all along, but because those symptoms didn't fit what the other doctors had in their heads, they dismissed them as... what... I don't know... as not mattering, or being a part of the problem, I guess. I'd ask "why is my foot swollen and purpley red colored?" and the doctor would say something to the affect that it didn't fit what he thought was wrong.... so I was supposed to what... ignore it?? Well, I guess that's kind of what I had to do, so far as they were concerned.

Very recently, like within the last few months, I read an article about a study done on RSD patients where they may have developed a diagnostic tool. They took some of the surface skin in the affected area and found that 20 to 30% of the sympathetic nerves were damaged (if I remember how it went right.) The thought of anyone touching my foot, let alone taking off some of my skin, is almost too painful to think about and write!! On one hand it's good if they have a way to definitely diagnose the disease.... but on the other hand, the one called "reality of pain," it's a whole other story! Maybe they use anesthesia... I'm not sure. I just know that every time I went to the doctor and he touched my foot (it didn't take more than that) I suffered for it for several days.

I'm such a stoic on the outside that no one can see what kind of pain I am in. Oh, I'm not stone faced, or somber all the time, far from it, but to cry, scream, groan, moan, or even wince if I can help it.... not much chance of that. I stopped crying over pain at a very young age and for me to even make a sound over it, the pain has to be very sudden and acute. If I were a screamer there are a couple doctor's offices that would have been thrown into utter chaos when they gave me a cortisone shot in my foot. The first time, though I was sure it was going to hurt badly, I was ignorant of just how bad. By the time it was done, I felt like there should have been claw marks on the ceiling by the time he was done and I hurt all over as if I'd been beaten, for days after, from all my muscles instantly tensing as I tried to keep my foot still.

The second time was some three years later and though I should have known better, I let this other doctor convince me it was all in the technique. He's fortunate that I had enough control not to use the "technique" of my other (booted) foot on him when he asked if it really hurt that bad with the needle stuck deep in between my toes... and No anesthetic! Again I felt like I'd been beaten for days after from my muscles all tensing at once. I'm not sure about the first time, but the second time I believe I went into a form of shock for about 10 or 12 hours. I could not speak to the doctor or anyone else for that long, though in my head I was ranting and raving at him and his "technique." Late that night I was talking to a friend online and it was like the dam finally burst and I said it all like I was spitting out bullets. Good thing that friend was easy going and very kind. He listened well, had all the right things to say, and I thanked God this friend was there when it all spilled out.

The next time I went to the doctor, he said that more shots were needed to get and test the full effect. I told him that the only way he was getting a needle near my foot again was if I was out cold under anesthesia... so, that's what we did.

Have I described RSD well enough for you, Eve? Any specific questions are good, because they help me to pin down the things that other people don't understand about this disease. I'm not sure how well I've done with my description, since I'm in an extremely nervous state over the letter I gave my brother earlier along with a copy for the pastor. God help me to trust in Him with all my heart and not to lean on my own understanding! My imagination is trying to ride a roller coaster, while I keep trying to shut it down and trust God with the outcome. I continually second guess myself, even when I'm doing what I fully believe the Holy Spirit is urging me to do. I just want Peace! and for someone to tell me it's all going to be ok in a way I can believe it! I feel so very alone right now.

One thing that really lifted my spirits tonight, besides the good visiting we had at Bible study. My sister-in-law invited me to ride with them to the service and piano concert that are the start of the church convention here. That she invited me made me feel really good! I'm nervous over taking and using my wheelchair... really nervous... but I have to do it if I want to enjoy myself and not to have to be taken home early. This will also give me a chance to see how I'll handle going to some of the regular convention services. I won't be able to manage all day there, but I hope I can make some of the evening services. I'd already dealt with the wheelchair issue (in my mind) so far as the services at the college, so it surprised me that I'm having a hard time with using it at the church tomorrow. Maybe I won't have fully dealt with it until I've done it.

Well, this is quite long enough now and I've written a lot more than I imagined I would tonight. Jesus is the Prince of Peace! I pray He'll share with me tonight! Hold fast to Him!

Sunday, 24 June 2007

Oops... didn't mean to post just a title

I hit enter on that last, not realizing that would post it.... or was it tab...

Maybe I have writers block, or more likely it's a hormonal thing... not to be too descriptive... lol I decided to just try make a start and see if I could get something down, despite the blank brain. Already I've run off to see what I can search on the site. Not a promising start. My brain isn't Really blank, if I consider it. It's more like it's had a cork put in the outlet and then been shaken up. It's quite frustrating, though I've gotten somewhat used to it, over time. Accchhhh! This is just not going anywhere, so I'll give up and try again another time

My ideas for writing have stalled

Saturday, 23 June 2007

It's my birthday and I'll cry if I want to...

I don't feel like crying right now though, so I guess I won't. I wondered if I would react badly to this birthday, since I came a little unglued when I was turning 29 and this one is 39! How ten years passed so quickly is beyond me. It just proves I'm a little "off" that I stress over the birthday before the ones most people stress over. Than again, I might just stress next year, since I haven't done it this year.

I got an online card from my birthday twin and a colored drawing from my youngest niece in the house. My brother and his family sang to me at supper (that was different) and another of my nieces drew me a card with funny faces on the front and $2 inside with an "I (heart) you."

I'm in the middle of a sort of episode that I wonder if I can describe. I have been writing bits on this as the day goes, so I'm picking up where I left off several hours ago. I go through these episodes perhaps twice in a week, perhaps much less, or more. They come and go without any warning, or reason that I can put my finger on, other than that it is part of RSD. I am intensely uncomfortable, both physically and mentally. I'm not in any particularly strong pain, but I feel like I want to crawl out of my skin, or scream and cry for no other reason than this discomfort. My thoughts feel like they are spinning and swirling around, but I can't pin them down, other than the ones directly related to this horrible feeling. What I wish most at these times is for sleep, because that would seem to be the only way to escape. I find that I itch at these times, just sort of randomly all over. It is very similar to the affect I've had when I stopped taking some temporary prescription pain killer, like vicodin. This usually passes within a few hours of starting and the relief is sometimes as intense as the discomfort, but a whole Lot better. I have a very strong drive during these times to eat and smoke to excess and since I'm struggling to cut back on both those things, it just adds to the misery of it.

It's later now and the episode is past. I just wanted to write it out while I was in the middle of it, because afterwords I can't pin as much of how it feels down. There is so much that I wish I could make a note of at the moment at the moment it happens, or is on my mind, but I find trying to carry a notepad and pencil too inconvenient. I have a tiny digital recorder that has more potential, but I haven't managed to carry that around either.

It's past midnight already, so my birthday is over. I'd better get this posted if I'm going to.. lol I copied and pasted this from wordpad and now it won't spellcheck for me... hmmm... ahh well.
"Take my life and let it be consecrated, Lord, to thee!"

Thursday, 21 June 2007

A day made special by people

I'm having a hard time starting this. I want to write about today before I forget, or lose my drive to write about it, but I give myself some time to recover from my trip for groceries. My thoughts get mixed up and suppressed by pain. I have started to exercise my arms by rolling back and forth in my wheelchair. I only started yesterday and not surprisingly my arms get tired pretty quickly. If I get to go to the church convention though, I'll have to use the chair, so I need to be able to get myself around in it. Also, when I go to the family reunion, I need to take the chair with me. When I think about it, it's probably a really good idea to just get some regular upper body exercise this way. I worry about bulking up my arms, because I've always done that pretty easily, but really, I do need exercise and if I can't work my legs more then it would be good for my health to work my arms. Now that I've made sense of it, God help me to do it! :)

OK, I feel the pressure easing off, so I'll proceed with the highlights of my day. I slept too far into the day today, but I think I must have needed it, because getting up was a lot easier than it is many days. I was just getting ready for my trip to get groceries when my phone rang and it was my baby sister! It is always such a joy to talk with her! We talked for 2 hours and could have gone on for many more. She's always so supportive and understanding of the things I'm struggling with and that is something I need badly right now! I can only hope and pray that she, and all the others who have been so supportive lately, is even half as blessed by conversation with me!

The second person who made me grin today was a stranger in the store. I have finally started using the motorized carts they have available, because walking around the store was so difficult. I fought that concession WAY longer than I should have and it was another blow to my pride to give in, but now I know I should have gotten smart long ago. Anyway, the fact I was using that cart was the reason I asked a guy near me if he could reach something on the top shelf for me. He was nearby puzzling over something or other and his cart was in the way of what I needed. I waited a bit for him to return to his cart... and a bit more... he was probably waiting for me to move on, but I out waited him... lol

When I asked him to reach what I wanted, he responded by saying something like "No one has ever asked me to reach something for them! You make me feel tall!!" I was so surprised by his reaction that I didn't respond to it as much as I wish I had, but just thanked him and smiled and went on. As I went on I heard him say something more, but it took me till the end of the isle to realize that he'd said again "you made me feel tall!" I was so tickled that my request had made him feel good! He didn't look all that short to me, so I was surprised that he thought of himself as short. I couldn't help grinning as I though how things that seem so small can make us and others feel good. I had been a little embarrassed (just a little) to wait for him and ask his help, but now I realize that God used that little thing to give both of us a boost. I do so love catching a glimpse of how God cares for us in little ways! God help me to respond quickly and easily to the guiding of His Spirit, even if it makes no sense to me at all!

Shifting emotional gears

I have a very difficult time adjusting quickly from certain emotions to certain others. I think I was ten the first time I noticed it. Everyone in the family was planning on going swimming and I love swimming, but I was informed I couldn't go. No one gave me a good explanation and it was all very puzzling and distressing. I went from excitement about swimming to very upset at the seeming unfairness of being left out, very quickly, but then making the adjustment back to excitement when I was finally told why I was being kept back took a very long time. My Dad had planned to surprise me by taking me to see a colt he was thinking of getting for me.

Now I had been begging for a horse for a very long time, so one would think I'd have been ecstatic. I had no greater wish than a horse at that time, but I remember being out looking at the colt some time later and still struggling to get over my hurt and get excited about having my dream come true. It was all just too abrupt and confusing and I battled inside both over my slowly adjusting emotions and over the fact that it was a battle to begin with.

This last week or so as I've had one thing after another hit me concerning getting to the family reunion, I've had that same struggle through it all. First I had managed to adjust to the fact that I would have to say I could not go. that was difficult and sad and even shameful, because of my inability to take care of myself. Then there was my niece asking if I'd like to drive with her and I jumped at that chance before thinking and realizing that I couldn't help pay for gas anymore than any other way there. When I said that to her, she said she would manage it and she said I had to be excited and happy about it. I wanted to be, but there was shame and embarrassment again, so I couldn't feel the joy of it. Then yesterday I was told that my family would pay for me to get there for my birthday present. By that time I think the ups and downs had just been coming too hard and fast and all I could do was worry over details.

There is good news now though, because I think I'm really beginning relax and feel positively about going in whatever way I can. My acceptance of such a gift is still tinged with some of that shame and embarrassment, but I am doing my best, through prayer and talking it over with my niece, my sister, and own myself =) to just say thank you to God and to my family for blessing me in this.

I talked with my niece about flying and I think we'll end up going that way. I tried to completely cover possible difficulties in airports and she basically said nonsense, it'll be a breeze, no problem at all, so quit worrying! I am blessed to have such a family! This niece of mine... who I remember as an infant... is an intelligent, beautiful, and kind young woman, to mention only a few of her fine qualities! I am thankful she lives near me now and for her companionship and friendship!!
The Lord is my hope and help in trouble!

Wednesday, 20 June 2007

It's a new day

But it didn't start off very well. First thing I was aware of on waking was someone hammering on my nephew's bedroom door, which is next to mine. I had to get up and go play the wicked witch, telling them to hush up. That getting up and walking across my room without any painkillers working in me, or any stretches to help me move is a killer. I drifted in and out (mostly out) of sleep for the next few hours, because the pain was B A D. A couple hours later my phone rang, it was a neighbor girl, thinking she had the house phone. I wasn't functional enough to do much more than let her know she had called the wrong line. I hope she didn't feel too terrible, because I know I sounded awful. After that call, I was just awake enough to take some Ibuprofen and then I actually fell asleep for a bit, only to wake up to the phone again. My phone hardly ever rings!

This time the call was from my sister though and I really wanted to be able to talk to her, but I still wasn't able to clear my head enough, so she let me go fairly quickly. All this made the potential for a wretched, weepy, grumpy, basket case day, over the top, but I think it won't be as bad as it could have been. I remembered to pray about it and I called my sister back to apologize and talked for a while. I'll be paying the price in pain for a few days for trying to do something about the wet carpet yesterday, but since I'm aware, I'm as prepared as I can be. I've been dealing with all this pain stuff for so long, you'd think nothing would surprise me and I'd be able to avoid the worst of it better, but I'm still boggled by the fact that such a small thing can wipe me out so badly.

Before I was injured and got RSD, I barely knew what it was to worry about hurting myself. I was a farm girl (an active farm girl) and I used to push cattle and horses around, drive the tractor, chop and haul wood, build fence, carry newborn calves in from the pasture when they wouldn't walk that way on their own, and all the other things that are necessary barn chores on a dairy farm. I was such a tomboy that I thought scars were cool, so I never worried about cuts and bruises toes being stepped on by cows. Now a horse stepping on my toes was another matter, because a horse's hoof has No flex and that's unbearable, but I lived through that too, once or twice. Fortunately the mare I handled most was usually very careful about where she stepped.

I still have many scars from being a head-long tomboy though. I was often called a "bull in a china shop" by my Mom and probably others too, because of how I charged through life, not worrying over how I might hurt myself. I was afraid to climb all the way up on the barn roof, but not of much else. I climbed to the top of every other roof on the place and up many a tree as well. I just never worried much about the potential for pain and injury, though I can't say I Liked pain when I had it. Very rarely did I let it slow me down though and after I left home to go on my own, I still continued on much the same. I was tough, I could handle it.

Well, no more... pain has finally defeated my head-long progress through life. I know there has to be a reason for all of this, in fact I think there are many reasons, but they probably all fall under the heading "depend on God, not yourself," but I still have so much trouble adjusting to this, even after nearly ten years. Whenever I think I have a handle on it, I am proven wrong yet again. I certainly know now that I cannot depend on myself and my own ability to make it through. I also know I need other people badly, but there pride rears it's ugly head again and I have a strong desire to hide myself away in a cave, or something, and never come out again. Wouldn't That just be great fun! LOL

Well, it's almost supper time, I'd better cut this short for now. I wonder how long I'll go on writing this much...
Trust in the Lord with all your heart and lean not on your own understanding!

Tuesday, 19 June 2007

Pride doesn't die easily...

And the struggle goes on for years... maybe a lifetime. Because of my inability to take care of myself combined with the need to get to a family reunion for my parents' 50th wedding anniversary, my family got together and decided to pay my way there. Now this is a wonderful and generous thing and I truly hope they are all blessed beyond measure for their kindness, but I couldn't just say "Great! thank you! That'll work," instead I have to consider every angle of it all to do my best to keep as comfortable and pain free as possible. My niece had asked me if I could drive there with her, which was also rough on my pride, since I can't afford to pay half the gas and all that. Driving would be better for me though, since I wouldn't have to consider all the walking involved with airports, or what it would take do the flying thing using a wheelchair.

Well, this offer from my family was to pay for flying. I'll manage somehow if that's what works the best, but that thought of getting through airports still overwhelms my brain. Also, my niece would end up having to help me through all that perhaps more than she realizes. So, I have to think about which is worst. Would 20 hours or so on the road be less, or more painful than a fairly short flight, but all the managing of myself and baggage and all on both ends?

My pain was pretty level earlier, but then I found that water had leaked into the hallway by my bathroom and I tried to do what I could to take care of the problem. All I did was pull up the edge of the carpet, prop it up, put some towels down on the carpet pad and step on them to soak up some of the water, and then put a fan on it. Just that, which seems like so little, knocked me almost flat for the next hour or so. I hurt so bad I couldn't even knit and could barely concentrate on talking a little bit when I went upstairs for Bible study. If I had had to go any further than up the stairs to go to Bible study, I'd have had to pass. As it was, I went without letting myself think, because if I had thought about it at all, I wouldn't have faced those stairs. I sound like an old person saying that (there goes that pride again.) We did have a wonderful Bible study and before it was over the pain had let up enough for me to breath easier.

Well anyway, I do need to think about what's best for travel, not only for me, but for my niece as well. She said she'd come over and we'd talk about it, so I probably should slow my brain down, gather all the facts I can, and relax, instead of stressing over it. I do really look forward to the reunion and I'm not going to dwell on thoughts of it all being ruined by pain, because it could be if I don't keep up the best attitude I can. My parents and ALL my siblings, plus their spouses and kids, will be in the same place for the first time in a very long time. We're going to have a Blast despite the mosquitoes!!! More on that later.

It seems that once I start writing, I sure don't keep it short! If I end up sharing this blog, I wonder if anyone will actually manage to get through reading it.. LOL! I guess I shouldn't think about that, since writing my thoughts helps me to sort them out and I need that. Jesus is the way, the truth, and the life! May God be glorified continually! I have asked for prayer about getting to this reunion, now I need to be thankful and trust that He will work out all the details!

I Always have trouble getting started when I write!

I certainly have enough on my mind to write stuff for the rest of my life, however long that might be, but I sure wish I could put it all into order quickly and concisely! I woke up today with "when I call upon Jesus, all things are possible" going through my head. I'm not even sure what the name of the song is and I had probably heard it on the radio while I was mostly asleep, but it was a great message to wake up to! I had had a really dreadful dream about a dying kitten that I don't think should be put into words, because it was just too repulsive and better not remembered. It's still clear in my head and I wish it wasn't.
Maybe I have trouble getting started writing because I'm always trying to pre-edit everything first... now there's a thought! I'm going to have to try just letting it flow and forget about the editing till it's necessary. I am, after all, writing for my own sake, though I may or may not share it.
I've had a fairly level day so far in the area of pain. I couldn't remember if I'd taken my pain pills at some point while half awake, as I try to do, so I had to wait long enough after I got up to be sure not to overlap, but it was ok today. Things can change in a blink with this pain, but I try to appreciate every moment when it's letting me relax a bit.
I think I'm beginning this in fits and starts and maybe that's just how it'll be. That's part of what this disease, "RSD" (Reflex Sympathetic Dystrophy,) does to me. I can be on a roll with a thought, or a conversation, or with writing, like now, and my mind will draw a blank. It might clear up quickly so I can go on, or it might end up on another track altogether. I tend to think that last is how it usually works. I lose my train of thought and in grasping for it, I come up with another one and go with it. That can be frustrating, but at least if I'm talking to someone else, they can often pull my brain back to where I lost it... lol! It does make writing difficult though and I have So Many things I want to write about!
At the moment I'm rambling and it's almost supper time, so I'd better get back to this later.

Just the beginning

Well, just trying to get a start on this and establish a page... have to see if I do anything with it in time. I hope this isn't just a waste of time.