"You should just go to better doctors"

My friend from freshmen year of college, @overflowinbrain, recently posted her reaction as someone else with a "invisible illness" - the author of reading "An Open Letter To Those Without Invisible Disability Or Chronic Illness …". As I explained in "Sleepless Nights", I too have a chronic, debilitating disease. While much of what I feel is similar to both Ms. Overflowinbrain or the mystery writer of the open letter, I'd like to post some of my thoughts and feelings as well.

This is going to be a long one. So go to the bathroom beforehand.

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1. Yes, shockingly, CRPS aka RSD is a real disease that affects many people across the US and other countries around the world.

2. My happiness and my degree of pain do not necessarily reflect one another. During my wedding, I might look happy. In fact, I am happy! But, just because I was able to put on a happy face and generally enjoy myself does not mean I was not in pain. Believe you me, by the end of the night my pain was so high I could barely walk, see straight and was literally nauseated. You read that right, my knee was hurting so much I thought I was going to throw up. Yet, despite the amount of pain I was in, I was happy to spend the occasion with my friends, family and new wife!

3. I'm still me! Seriously, I got hurt and now I have CRPS. My personality might have changed slightly (whose wouldn't after becoming disabled?) but, deep down, I think you'll find that I'm still a nice, caring, fun guy who loves dogs. I still love The Simpsons, playing Dungeons and Dragons, eating with friends, and so on. I'm sad to say that since my accident I have lost friends. But, it occurs to me, that if they would stop calling/emailing/IMing me after developing CRPS, then they really were not true friends at all.

4. Like you, I have good days and I have bad days. Who doesn't have a bad day once in a while? The fact is, on my good days, I'm in more pain than 99% of you could possibly imagine. You don't even want to know what I experience on bad days. Just because I sound cheerful and can bring up topics that are not related to my pain, does not mean I'm not in pain.

5. Speaking of bringing up topics about my pain - please, please, please, don't immediately ask, "How is your pain today?" when we first begin talking. Most of the time, it's no different than it has been since I developed CRPS. The fact is, if I'm doing better, I'll bring it up. If I'm doing shitty, I don't need you asking me how I'm feeling which makes me focus on the pain more than I already am. There are so many other topics to bring up in conversation. Stick with those and keep in mind that unless I bring up my pain, I probably don't want to talk about it.

6. "You should just go to better doctors" and other equally helpful suggestions. Yeah, I'll get right on it. The fact is, I'm seeing some of the best doctors in the country when it comes to CRPS and its treatment. If you know of a CRPS expert, you can run them by me. But if you don't know of any doctors who specialize in CRPS and other pain disorders, please keep your suggestions to yourself.

7. Yes, when that (slight stumble / pet bump / child bump / other seemingly minor event) occurred, it did hurt. A lot. I am not being melodramatic, it really did hurt. I know, it did not look like it would have hurt. Before developing CRPS it wouldn't have hurt. Now that I have the disease, I have become hypersensitive to stimuli. There are many times when what I feel seems to be the reverse of what a normal person would experience. I know it is strange but the harder the pressure, the better it feels. I use this analogy a lot:
- When the dog sits on my lap, it hurts, but not much more than normal.
- When the dog's tail sweeps lightly across my knee, it feels like somebody is using a grinding wheel made of liquid nitrogen on the bones and tendons inside my knee.

8. Telling me about the time you injured yourself and telling me that I should just get over it the way you did is really insensitive and totally unhelpful. I don't feel like I need to explain why I feel this way.

9. Even though this condition can make me miserable from time to time, I can still make jokes about it. You don't have to feel like you have to totally censor yourself in front of me. Hell, I make some tasteless jokes like, "On the plus side, I get better parking spaces!" or "Come with me to Disneyland, you'll get on all the rides first!"

10. I'm very grateful to those who help me. Holding the door open for me, picking up something I dropped, or even just offering me a place to sit will always be appreciated! Other kind gestures will be equally regarded.

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That's all I can think of now... I'm sure there are other observations I've had, but I think you should be able to get the point.

Basically, long story short, yes, I'm in pain, but there's more to me than my CRPS.

If you suffer from a chronic illness posting something like this might be helpful for you to do as well. I am sure others can gain some insight from all of our observations. If you have anything you'd like to add, please post them in the comments below.

If you have any questions about my condition, I will be more to happy to answer what I can in the comments below.

Sleepless nights

I have not shared my medical conditions with my nonexistant plentiful readers.

I have a severely painful nerve condition called Complex Regional Pain Syndrome. Basically, my right knee was injured a few years ago, and though it is physically healed, my brain believes it to constantly be in a state of sever injury and therefor is always in tremendous pain. Due to this condition, I need a cane to walk.

There's a scale for rating the severity of pain for different conditions called The McGill Pain Index. CRPS always rates extremely high - you can see it compared to other pain conditions here:



That's right, the pain in my leg is worse than it would be to have one of my fingers amputated w/out anesthesia.

It always hurts. Always. Sometimes it feels better than others, but I never have relief from the pain. It hurts so much I have begun to not only perceive pain differently in other parts of my body; but, I have also begun to become used to being in pain. People always ask, "Where on a scale of 1-10 is your pain? Keep in mind 10 is going to the emergency room." If the emergency room could do something, I would have gone long ago. If I were to go to the emergency room now, they would probably tell me that I have CRPS and there's nothing they can do. So, I cannot answer the 1-10 question accurately. What feels like an 8/10 for me, would likely be unbearable for anybody else. Keep in mind that there's a lot that will make the pain worse, while very little that makes it better.

There's a lot I can't do without aggravating this already painful condition:

• Go to movies (seats are too uncomfortable)
• Drive for more than 30ish minutes
• Ride in a car for more than
• Walk for more than 20 minutes w/out taking a break
• Run at all
• Climb stairs comfortably
• Many more
  

So, you might ask, what do I do to help this condition? Well, there's a few things I do regularly:

• Take medications like muscle relaxants and antidepressants (pain killers do not work at all)
• Lay down
• Go to physical therapy for 2-6 hours per week
• Use mirror therapy
• Take lots of breaks while out
• Drive as little as possible

Wow, you might think to yourself, that's awful. Indeed it is, but you know what? No matter how much pain I am in, I can always count on one thing. I can always count on Bunny to help me, no questions asked. She is always willing to help me no matter what it is I need help with. Sure, there are certain times that she can't help, but just knowing that she is there for me makes it so much better. Just knowing how much she loves me makes living with this condition so much more manageable.

Now, you might be wondering why is this post titled "Sleepless nights"? Well, when one is in the amount of pain I'm in (as many others with CRPS will attest to), there are good nights, when my miginary of medications helps me get to sleep despite the pain. Then, there are bad nights. No matter what I do, I just cannot get to sleep.

Last night was one of my sleepless nights. I tried everything I could, and I just could not get to sleep. (It didn't help that the dog kept kicking my knee). Even though it was a terrible night, Bunny was able to help me by doing nothing more than scratching my back and whispering that she was here with me. I never got to sleep until 5:00 am and only slept until 9:30 am, and I'm exhausted today. That said, I'm so glad that I got to spend most of the day with Bunny despite the exhaustion and pain.

No matter how much pain I'm in, she never ceases to amaze me. She's the most caring person in the world. I'm so lucky to be married to such a loving person!