we had a Neurologist appointment on Friday, we haven't been since June or July. J has been doing so much better that it didn't seem like something we had to push for. He has been getting stronger, walking better, although he has bad days, it seems like there were WAY more good days.
or so we thought
they did a test on 2 of his nerves on friday and one tested the same as the summer...which is disappointing as he seems to be doing so much better, the other nerve is doing worse....WORSE! what is going on?? it was a surreal moment.
On one hand the appointment was really good b/c we got to meet with the departments nurse and she was all about our emotions and feelings and gave us a wealth of information and support, it was AMAZING!!! and a first. She encouraged J to loose weight and take control of his situation. She told us that very few spouses come in to the appt's and he is lucky to have such a supportive wife. She said many couples break up due to illness. She talked to him about being in control of self managing and if learns more about it, instead of relying on me to find out everything, he may actually start to take it all more seriously and be pro-active about it. I do think there is a big part of J that is still in denial about what is happening to his body. So that was all great BUT to find out that he is not getting better was so shocking. We were stunned.
The Dr feels that there may be an underlying other problem. She is testing him for a genetic disorder (the results take 3 months to get back!) that he could have on top of the CIDP. This has actually been mentioned before, the fact that J has always had a slight tremor, the fact that his half brother also was born with a tremor and he had epilepsy are signs that it is entirely too much of a possibility. She also has wondered about it before as this is J's 3rd auto-immune disease! They didn't seem to want to get into it too much with us, they didn't want us to research it really and barely said the name legible enough for us to hear it. The nurse wants us to be positive and stay positive, which is great in theory but when you don't know exactly what you could be facing it's a little unrealistic. J asked for a basic explanation for our peace of mind and the nurse relented and said that with CIDP it comes and goes like a wave, you have good times you have not so good times, if it is this genetic disorder there is no wave, just a downward progress. So there you are left not really knowing what it is you could be dealing with, the disappointment of being told that indeed you are not getting any better but getting worse, and knowing that you can't rely on your body to tell you what way is better.
It's so much to process. So much I question. I am still in a state of shock. J is trying to sort out all his emotions and is still in a bit of shock and understandably upset. So I guess all we can do is pray and hope, which is a funny thing b/c my hope is not the abandoned hope that I would love to feel but it is more of a cautious well guarded hope in which an innocence has been lost.
He was just talking about moving back to PG if our tenants don't want to buy our house, I told him this morning that he has to know now we can't. Even if it is just the CIDP and not the genetic disorder on top of it, we need the support of our family, be close to the Dr's and have the support of a church family to help us through. I don't want to go thru that alone again. It's hard to not want to retreat into some small hole right now here, I can't imagine doing it 900 kms away. He was upset, that felt like a death again, a death of his dreams. I said, we just have to find different ones. Taking the kids to Disneyland in March was the best idea we had, we are SO glad that we knew we should do that without a second thought. We need it, we need to have that time away with our family and just enjoy each other.
I guess making smaller plans like that is what we have to do to keep our eyes off the entire picture, off all the what might be's, and try to cling to whatever threads of hope we can.