not sure what to "title" this

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.

8 comments:

Anonymous said...

Lise,
I love you.
Debbie

Nadine said...

It is difficult news to hear. I'm sorry. I'm praying for you. Being on the side of facing health issues without church support or family nearby is difficult. I know what I speak of.

Jensboys said...

Hugs, prayers and wishes for good news, soon.

Jen

Ruth said...

Hey, I kind of know what you are feeling...that disappointment, but knowing that there is hope, the thought that things are getting better and then getting hit with the worst. That is what we have been dealing with on another level. We will be praying for your family here as well. Hugs!

Anonymous said...

I know how you feel. We have been going though something very similiar with my Mom. Its tough and I get angry too and God knows at who. But having said that, "God's strength is made perfect in our weakness". Think on that one. God knows I have and it helps alot. Love you guys.

Oh and yes, do what you can to give you body a fighting chance. Strenghten it by treating it right. Not just him the whole family. It has to be one for all and all for one.

REG

Shash said...

The only thing I could think of this morning was to pray for a spirit of peace to rise up from within you. Philippians 4 is a great chapter!! Vs 7 says, "And the peace of God (shall be yours), which surpasses all comprehension, all human understanding, will guard over your hearts and minds in Christ Jesus."

It goes on to say that it is important what we think on in order to get that peace God wants for us. Vs 8 is a blueprint, a formula for peace that we need to follow. Sometimes we have to force ourselves to think this way but the end result is way worth it. He promised it would be.

"I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse." (the message)

Vs 9... "practice these things, and (I) the God of peace will be with you." (NASB)

Positive thoughts lead to positive emotions which leads to wise behaviour and fruitful consequences. This was an idea proven by Scientists in the US (a worldly study) who studied the effects of negative verses positive input in people's lives. They've proven what the Bible's been saying all along. :-)

This isn't saying ignore the negative thoughts/feelings but don't give them more of the spotlight then you give the good.

Patsi Metherel said...

Lise...I am so sorry you and your family are having to deal with health issues...so upsetting and worrisome...we will be praying for you guys...if you need any help with ANYTHING...please don't hesitate to call or FB me...love you guys..xoxo

Patsi

MugwumpMom said...

Personally, I see nothing wrong in doing some research...better the enemy you know then the one you don't. So, last night I googled "syndromes that start with the letter M" and "illnesses / diseases that start with the letter M" and was able to locate alot of lists, listing every known condition starting with M....yit may be a start for you...try it and see if there is anything you recognize, and if so, then put the MD on the spot and ask, "is this the ..... you mentioned to us?" Just a thought. Sometimes it's the not knowing that gets our imaginations running wild and at least if you know, you can take that to God.