Happy Halloween

Happy Halloween to everyone! It was fun as always to get to see all the kids in their costumes as they came to the door :)

We have a new Super Walmart in town, and my mom needed to get groceries, so I said I'd go with because I wanted to see the new store. I knew full well that I would suffer the consequences later. But the second half of the time in the store, I could already barely walk. I look kind of funny when I get to that point, because I basically waddle/shuffle really slowly. It's not so fun for me though :/ That was a use of a lot of spoons I guess you could say, right?

My left foot keeps getting really hot. I'm not exactly sure what this means, but I'll try to remember to ask the doctor at the nerve block on Tuesday.

Looking forward to getting some relief on Tuesday!

Amitriptyline

I think I sleep better the nights I don't take Amitriptyline. Weird? I'm almost sure of it, though. I didn't take it last night because I remembered too late and the doctor said not to take it much past 8pm because I'll be groggy the next day. And I slept better last night than I have in a week, the last time I didn't take it (because my little cousins were sleeping over). If it's not really doing anything do I need to be taking it?

My nerve block is fast approaching. I'm not really nervous about it though. I mean, I'm a little freaked out about having a giant needle injected into my spine, but I'm not nervous. I think that's a good sign :)

It sucks that whenever I push my knees more than the bare minimum (for example extra walking) I have to pay the price and then a whole lot more. I've often had the internal struggle that I assume so many with every type of chronic pain have. The struggle that, do I do what I want to and attempt to have a more normal life and not let this thing beat me? Or do I give up on fun things and stay resting in order to not experience any extra pain? It does suck that I can make a decision one day to go to the mall, go through having pain and needing to take breaks, but still make it through, only to have terrible pain that night and the next several days. Everything's give and take. No one knows how many little decisions you have to make each day with big impacts. Do I take the stairs up to class or do I go out of my way to take the elevator?

I would say, though, that there's never one right or wrong decision. You can't let the disease take all the fun out of your life, but you can't live with that much of an extreme amount of pain either. Ah the ambiguity of it all... :/

I'm feeling much better today and was able to get some working out in, which just makes me feel better overall. I don't know if one day the RSD will spread to my arms or hands, I mean it already spread from my left knee to my right one, so I realize the importance not taking anything for granted. Now I can do things like boxing which is still a cardiac workout that is ok on my knees, but maybe one day I won't be able to. Or maybe I always will be able to too (looking at the bright side :) ). Either way, I know the importance of living each day doing what I can, so I won't regret not doing it if I can't later. Does that make sense?

As my knees have continued to get worse over the last year and a half, I have noticed all the things that I took for granted before that I now can't do. Like kneel down at all. Or be able to go the mall without horrible pain for the next few days after. Or be able to wear whatever shoes I want. I could go on and on, but you get the idea.

Sometimes I do feel bad for myself when I'm bound to the couch, missing the freedom I used to have that was taken from me. In this way it's very similar to celiac disease as well. And I'll admit that sometimes I do feel bad for myself with that too, wishing I could eat birthday cake with everyone else or be able to order whatever I want from a menu. But I can't let these feelings stay too long. And neither can you. If you dwell on the past, you miss out on the present. And that just leads to more lamenting of the past gone by, with regrets this time. It's a horrible cycle that no one should live in. I'm not saying it's easy to focus on the positives when there are things you love that you miss out on now. It's something that takes focus and determination. But if you want to be happy, it's possible for you.

Simple Explanation of RSD Website

I had to share this because I thought it was really cute, and actually quite helpful in explaining RSD/CRPS not only to children but also to anyone who is having trouble understanding it. Have a good day!

http://www.angelfire.com/me2/rsdpainpals/ExplainingRSD.html

Sick

Well I spent the long weekend with my 3 little cousins that I love very very much. Two of them are sick, though, and I seem to have gotten it from them. I guess that's what happens when you let a hacking child cuddle with you ;) My fever is climbing, and I feel like crap all over. I actually was nodding off all through class today and I never do that. And I'm supposed to do my babysitting job tomorrow. Uh oh.

I have seen some discussion saying that having celiac disease weakens your immune system overall. I have always had a very weak immune system, catching things from others easily and then taking twice as long to recover as everyone else. Just out of curiosity, I wonder if this is true?

The Gabapentin actually seems to be helping a little bit! And before I got sick, the medicine was also helping me sleep through the night, which was wonderful. Although my limbs, always around late morning and starting after I increased the Gabapentin, feel all weird like their going to collapse and that they're propelling me forward when I walk. It's no really big deal, just weird. But I'm thinking it's probably a common side effect? At least it's not causing my leg to balloon up like the Lyrica did so I'll take it!

This entry isn't great and I apologize, but I can't think straight with the fever. I kept missing the streets to turn on when driving. *whoops*

The Food I Eat

I needed a couple more credit hours this semester so I decided to enroll in an online nutrition class. Today I finished a 6 page paper that was a nutritional analysis of what I eat. In doing so, I realized how dramatically my eating habits changed since going off of gluten in April. Before, I was like the rest of America, eating a lot of processed foods. I would eat meals on the run, and therefore had a lot of items on hand that I could just throw into the microwave and it would be ready. Yet now I can't eat most processed foods, because most contain gluten. I've been forced to make my meals from scratch. It was an adjustment at first, because it takes a lot more time, but I consider the almost necessity to eat healthier a blessing of celiac disease. It is really good to know every ingredient that goes into my food and have it all be fresh rather than eating a mess of processed ingredients, however tasty they might be. I also find myself feeling more satisfied and snacking a lot less.

Because of this change, when recording what I eat, I noticed that I am consistently under the recommended calorie intake, and usually come in at about 1500. Because of this, I am also lower than the guidelines of every category on the MyPyramid. Yet I feel so much better about the food that I put into myself than I ever have. Some of the things I used to eat don't even look good anymore. (Some of them, I'm still eying the Totino's pizza rolls in the freezer and those do look pretty good...). But really, I realized writing that paper that I'm very happy with my eating habits and what I put into my body, and I am proud to be able to say that.

Fire

I don't think anyone could properly understand someone with CRPS who says their [insert affected body part] feels like it's on fire without actually feeling it for themselves. I'll admit I probably would have found it hard to understand before I had it myself. So how then do we properly describe to people what we're feeling? This is something I'm struggling with.

Additionally, I spend a lot of time with kids between volunteering, my job as a regular babysitter, and spending lots of time with my younger cousins. I wear braces on both knees so the downside is that it's obvious something's wrong. Kids seem to notice the braces more than anything (maybe because of their height?) and are always asking me what's wrong, how I'm doing, and why I'm not getting better. The little sweethearts are asking with the best intentions in mind and I appreciate it so much but my vague answers just aren't cutting it for them lol. I don't always know what to say to them either.


On another note, staying active and working out is very difficult with CRPS because it can cause lots more pain if you're not careful. Since my knee pain started I have found Wii Fit to be a good option. There's lots I can't do on there because I can't kneel at all, and some activities really bother my knees, but there's also lots I can do, and I focus on that. My favorite thing is definitely the boxing. It's really a good workout and helps me get some of my aggression out as well ;) Just thought I'd share the option. I still do all of my PT exercises as well because those are important, but getting a good workout just makes you feel better about yourself with this disease doesn't it? It makes you feel more normal.

Doctors Appointments

Monday I followed up with my gastro after being diagnosed with celiac disease in June. I get the impression that they actually don't treat a lot of celiacs there, because every time everyone is always so surprised that I'm feeling completely better and so happy for me. It's kind of funny, but I don't mind. As long as I got the right diagnosis and I'm feeling better, that's all that matters. And maybe because of me they'll learn more about the disease now, which would be able to help other patients. I hope so! Celiac disease can be really hard to get an accurate diagnosis for, much like CRPS, so many people can go years and years with the wrong diagnosis and not feel better. The awareness of celiac disease needs to be spread! There are so many medically-related issues I had throughout my life that I just kind of learned to live with and accepted as who I was that I then discovered were attributed to the disease. Kind of amazing how it interferes with so many aspects of your life without you realizing it.

So yesterday then, I had the appointment with the pain specialist. I found her online, and she seems like a very kind person. I am still in awe of how quickly she diagnosed me! I mean, if after just hearing about my pain, looking at my knees, and feeling my spine she could know with certainty that I have CRPS, then why couldn't any of the other specialists? I guess that's the thing, that some doctors get so stuck in what they're used to treating that they fail to see other options. But anyway I am so grateful to have a diagnosis. To have a name to  put to what I'm feeling. It is extremely frustrating to have people always asking me "What's wrong with your knees?" and having to tell them, "honestly, I don't know." I hate having to give that depressing answer and I don't have to anymore! (I have to wear braces on both knees every day because I wouldn't be able to get through the day without them because of the pain, so that's how people see something to ask the question.) To be honest I didn't know what mottling was either before she mentioned it. I had noticed the splotchiness of my skin, but I never thought much of it. And all of the "odd" symptoms (like burning pain, swelling, sensitivity to touch, etc.) that the other doctors couldn't explain? It all made perfect sense to her because it all fits in perfectly with this disease. I just feel very blessed to know what's wrong with me, have a doctor who won't dismiss me because she can't help me anymore, and have new options for treatments.

I have my first nerve block on November 2nd. I'm not too worried, because it seems like a simple enough procedure. After having 3 surgeries and 2 other procedures done, the whole thought of anesthesia and stuff doesn't really freak me too much either. Although I much prefer general to twilight (I'd rather be completely asleep than remember bits and pieces and get frustrated because I can't piece them together correctly in my head), it is what it is and the actual injection only lasts 5-10 minutes so it would be kind of silly to be under general for just that short amount of time. The doctor seems hopeful that several of these blocks could put it into remission. That would be fantastic, but I know not to get my hopes up too high. I will grateful for any kind of relief, because it'll be better than nothing, which is how I've been living. She also put me on Gabapentin (Neurontin) in order to calm down my nerves before the blocks and also Amitriptyline to help me get sleep at night.

My Story

I feel like I should introduce myself and tell my story before anything else. This includes both the stories of the CRPS and the Celiac, because they kind of overlap. I'd love to be able to help just one person by sharing my story. The purpose of me creating this blog is to be of help to others going through the same things. I've seen what how awesome and wonderfully supportive the celiac community is, and the RSD/CRPS community seems to be the same. I want to be of use as well, whether it's with support, ideas, etc.

In April of 2009, I fell on my left knee. I was running to answer the front door in a hurry because my father was sleeping upstairs and my little cousins were continuously ringing the doorbell. The floor was wet, though, because it had just been washed, so I slipped and down I went. I got up quickly, though, to open the door. I got a big bruise from the fall, and it hurt for awhile, but then the pain went away as it should. A few weeks later, though, I started having pain again. I didn't know why, but I let it go. I don't like to see a doctor until I'm sure whatever's wrong with me isn't going to go away on its own. When it kept getting worse instead of better, I finally went to my GP. She sent me for x-rays and referred me to an orthopedic surgeon (OS) who ordered an MRI as well. Both the x-ray and the MRI were normal. He decided to try NSAIDs and start me on physical therapy (PT). I spent 6 weeks doing physical therapy, which didn't make much of a difference, and trying many different NSAIDs, all to no avail. The OS then wanted to try a cortisone shot. I was wary, but consented. It didn't help at all, and the pain was actually much worse for a couple days. As the pain just gradually kept getting worse and nothing was helping, he finally decided to do arthroscopic surgery on the knee in October 2009. He removed the plica, and we hoped that this would help. Shortly after the surgery, my right knee started hurting. At first I thought it was just from overcompensation after the surgery, so I didn't say anything. But when it kept getting worse and was taking on symptoms of the left knee, I knew something wasn't right so I brought it up to my physical therapist. After keeping her updated on the pain of the right knee, she soon knew as well that it was more than just overcompensation. My left knee took a long time to recover from the surgery, much longer than a normal person. I was in PT for 9 weeks after it, and my PT helped me greatly in getting back to functioning level. But now I had 2 painful knees, always gradually worsening.

Now also starting after the surgery, I started getting nauseous every morning, as well as *other* bothersome stomach problems. I would have to force myself to eat breakfast, and gag all the way through it. But I ignored it the best I could, because I wanted to focus on my knee problems.

After trying other pain medications as well as lidocaine patches, my OS decided to refer me to a rehab physician. The first appointment with him seemed promising. He took the time to understand my pain, and knew I needed to get better. He first tried me on Lyrica, which I had a weird reaction to. My right leg swelled up really bad on the medicine, to the point were it was scary. He then put me on Cymbalta, which gave me such horrible headaches I couldn't function, so I had to stop taking it. After this, he said there was nothing more he could do for me and referred me to the Rehab Institute of Chicago. After talking to people at the RIC, I realized it wasn't for me, especially at the point I was at at the time. They just wanted to manage my pain, but I still hadn't been diagnosed yet and needed to know what was wrong with me first. I didn't want to give up fighting yet!

I went back to see my OS and suggested both the possibility of a nerve problem or maybe something autoimmune. He said both were definitely possibilities, and decided to go the route of testing my blood. The results were normal, but I still decided to see a rheumatologist to be more thorough, and also get another perspective. The rheumatologist couldn't find anything that was wrong with me either. She decided to send me to more PT. I went there for 4 weeks, and I actually did see a little improvement in the pain near the end. I would have loved to see if that improvement would have continued if my prescription for PT was extended, but sadly that was not the case, and when I was done there, my progress stopped again.

By this time, the stomach problems I was having got much worse, to the point where I could no longer ignore them. Almost every time I ate, I would have HORRIBLE stomach pain. I was miserable, scared to eat anything, and needed to get help. Before I went to the doctor, I googled some of my symptoms. I saw some mention of a person with similar symptoms feeling better after going off of gluten, so out of curiosity I looked up the symptoms of celiac disease. I was amazed that the list described everything I was going through! I started monitoring what I ate, and sure enough, if I ate something with no gluten in it, I didn't have the pain. I went to my GP and after telling her my symptoms, the first thing she said was "it sounds like celiac disease." I didn't even tell her that's what I thought it was. She referred me to a gastoenterologist. He agreed that that's what it sounded like, and ran the blood tests as well as ordered an endoscopy as well as a colonoscopy. Until those procedures are over, you need to stay eating gluten for the results to be accurate, but once they were done I went off of it. I immediately felt better. Not only were my stomach pain and all of my other symptoms gone, but I just felt better all over as well. So I knew that celiac disease was definitely what I had even before I finally got the official diagnosis in June.

During all of that, I actually switched things around and put my knees on the back-burner for awhile until I got my stomach problems taken care of. Then my summer was busy with volunteering and a trip to Europe. I was in a lot of pain from all of the walking in Europe, but I made it through, and it was an amazing trip despite the pain. Finally about a month and a half ago I went back to my OS to see if maybe some of the other medications would work now that I was off gluten? Celiac disease is actually an autoimmune disease, and autoimmune diseases cause inflammation. I was hoping that when I went off gluten the pain would at least lessen, but apparently the two weren't related at all. He had no ideas to help me and told me "sometimes the pain just never goes away and you have to live with it."

I was in so much pain some days that I couldn't stand it, and I knew something needed to be done. I turned back to my friend google, and after I search of "burning pain" I came across CRPS. I couldn't believe how it described me! I knew this was what was wrong with me, I was sure of it. The presence of an initial injury with continued pain that is much worse than it should be, the failure of other doctors to find something wrong and dismiss you, the burning pain, hypersensitivity to touch, swelling, changing colors, and more, all of it was me. I found a pain specialist who treats CRPS online and also had very good reviews, and made an appointment with her. I saw her today, and after discussing my pain with her and having her examine my spine and knees, she knew immediately and without a doubt that I have complex regional pain syndrome. Hallelujah!! It's amazing to finally have a diagnosis and a name to put to the pain. I spent so much time feeling awful, wondering what was wrong with me and why I just couldn't be normal, why the treatments weren't working and the doctors could find nothing wrong. It's very difficult mentally as well as physically to live with chronic pain, especially before a diagnosis. I now know that I am normal, for CRPS at least, because it accounts for all of my symptoms. Right away looking at my knees she noticed the swelling and mottling. And when she was pressing down the sides of my spine one spot did hurt. It turns out that spot is actually exactly where the injection goes in for the nerve block. It just felt amazing to have all of these symptoms that I've been experiencing so long and doctors told me there was no explanation for, after so much time being angry at myself, at my body, for having them, and now I have justification. Proof. Validation. And that is a feeling nothing can ever diminish. So while the diagnosis itself is depressing (it's a progressive disorder for which there is no cure) I am at least better off than where I was before the diagnosis. I can't wait to start the nerve blocks- if I can at least get some relief it'll be amazing!

My knees are on fire as I'm typing this. Living with chronic pain is horrible. I can barely stand it on nights like tonight. But I am a fighter, and I can't let this get the best of me. It may limit what I can physically do, but if I let it take over my mind as well, then it has really won. I look forward to sharing my experiences with you all, and I hope my story inspires someone :)