Dr. Dedo
It has now been exactly 3 months since Alice's return from the hospital and she continues to improve.
It is such a process - sometimes it feels like "watched pot never boils" (as Dr. Burt had told Alice), and other times it feels like all of sudden you become aware of a clear change.
As Dr. Dedo (orthopedist) had explained to us, with neuropathy, there are pains of degeneration, and then there are other pains of regeneration, which can be just as strong.
Throughout this whole illness, with all the doctors Alice saw, Dr. Dedo is the one we learned the most from - actually I want to say we learned everything from. All the things we should have learned from neurologists, including things like putting a towel on the shower floor to feel more stable, or how nerve cells function and why Alice feels the way she does, we learned from Dr. Dedo.
Dr. Dedo seemed to be the only one also who understood pain management and the importance of taking pain killers early to stop the pain - and how as long as you are taking pain killers to absorb pain, you have no risk of dependency.
Pain management is so crucial when you are dealing with CIDP, and when you are faced with a doctor who doesn't get it, you'll be left with your own ignorance & fear of how pain works. This is very important - and again, Dr. Dedo was the only doctor to not only explain this process clearly, but also give Alice the prescriptions she needed. Honestly the essence of this illness for Alice was pain management - she would wake up in pain, deal all day with her pain, go to bed in pain - and it was all about managing that pain. There were periods of time (seems like months at a time) where it seems it was all she did, manage her pain. And she always knew, no matter how bad it got, that the maximum daily amount she could take to not have organ damage was 5 pills /day - and on some days, that was about half of what she truly needed.
Dr. Dedo explained the importance of stopping the pain as soon as it rose, even if that meant taking 2 pills at once.
And Alice was very aware of that match between the level of pain, and the amount of pain killers, and i've only ever seen her take the strict minimum. But she claims there were a couple of times where she got a small "high" from it, because the level of pain was lower and didn't warrant a full pain pill - this is what Dr Dedo had explained - still, I remember her saying she doesn't understand how people enjoy vicadin. Guess it's a whole other thing when you're not taking it for pain.
Pain management is a subject I could quickly get emotional over because it is so crucial for patients to understand this - and when dealing with an illness like this, not having that information can mean a lot of unnecessary pain.
Alice has been explaining this to our friend Jim, who has had the same manifestation and progression of CIDP as Alice (and now doing the stem cell treatment). We see Jim in "6" pains (on a scale of 1 to 10), who would rather "wait it out" and then spends hours dealing with that pain, because he is afraid of taking a pain pill and getting addicted. I should speak in the past tense actually, as he has gotten so much better at taking a pain pill when he needs it now, although he'll still be reticent and take half a pill when he really needs one.
And I see so many doctors having these same fears, and consequently reinforcing them, not prescribing much needed pain pills, and leaving patients with so much needless pain. makes me angry.
So we feel so thankful to Dr. Dedo.
And when we told him about this trial at Northwestern, he was immediately encouraging and told us if it were up to him, he would have absolutely no hesitation. (this in the face of the neurologist who refused to back up Alice's desire to go)
So at the last appointment with him, we learned why, as nerves reawaken, it can be painful, and particularly at the muscle "entry point" in the middle, before the nerve pans out.
He also explained that another painful factor is shin splints, caused by Alice's rebuilding of the muscles and doing all these new movements.
Now it has been three months, and it seems she no longer has the "shin splints" and there is improvement in her muscle pains. Still there, but there is definitely an evolution. Her muscles have come back, and she can do all these movements and exercises that she hadn't done in 2 years... push ups, sit ups, balance exercises - no running yet, but that will come with the ankle reflexes.
And, like watching a kid grow, i will look at her and all of a sudden realize the amazing progress she's made.
Posted by me
at 6:52 AM PST
Updated: Tuesday, 9 February 2010 7:48 AM PST
