Tuesday, May 20, 2008

One more dr visit down....

How many left to go? geez that seems like all we have been doing. Dr's appts. I go and then come home and just fall out for days. I know that sounds crazy to alot of you but it is our life these days. Today was a big one. The Rheumatologist. (lupus dr) Really like this guy he is very nice and explains everything so good where you understand what he is saying. He said yes.. I still have it but my tests are not different from what they were. Actually its a combination of things. He feels it is MORE the Multiple Sclerosis raging war right now. We asked if he thought I was mis diagnosed back when I was dx with Lupus he said NO not MISDIAGNOSED. just in addition to... He said the lupus isn't as dominant as the MS (if that makes sense) SO that just confirmed the what hte neurologist thought and off to UAB we go. We will get his opinion of which therapy to do and then start waging our war back.
it is so hard to know what to fight when you dont know what your fighting against.
So many people don't understand all this and what peopel go through.
IT is an entire LIFE CHANGE. I had been in a remission type state for so long and got spoiled. I was able to do stuff and go places. Play with Bella and not get tired. NOT LIKE NOW. The shingles brought all this out we do believe. And boy did it. We asked if I had this also all along, why was I not dx with it sooner. But he said it takes sometimes YEARSSS to get a proper dx, some people have been waiting up to 10 years to get a dx at all. Ironically it has been 12 years since I got dx. with lupus. He said the medication that I was on for lupus could have helped and also getting pregnant. pregnancy does put people in remission. WELL THERE IS no chance of THAT happning again so We will have to leave it to modern meds haha. WHICH are beta seron Injections.
IM NOT looking forward to that but Everyone I talk to that is on it. says it is tolerable. It is what it is..and we will pull up our boot straps and fight it with all we have. I am hoping I can get to scrapping more like I had been. Side effects are wonky right now on meds but that will pass.
Im so appreciative to all who have gone through this battle with me and have put up with me. It has been difficult on all of us.
So my goal now is remission. I have been asking about diets, and exercise (which is comical right now since I can barely walk without a cane or walker) But it will get better each day as soon as we can start the injections.

SO many people are sick right now. It has really had me down. a very dear friend of mine Latonya is about to start her fight for life. I feel so weak beside her ,she is a pillar of strength and beautiful in every way. I admire her so much. We pray for her morning noon and night. Bella remembers her when we say our blessings. I hope you will pray for her too.

I know we all have our battles. I am not even comparing so don't think that. Everyone has something.
Im just glad to FINALLY know what ALL it is we are fighting against and why my body is acting the way it is. I miss being with my family (missing christmas' back home and going home for anything basically for 2 years now) and all that has been taken away. I JUST want my life back! Now maybe that will start.


Angela said...

You know I am praying for you! I am not going to stop. You are a tough cookie and I admire your strength and courage. You have too much to fight for to give up. Not that you need me to be proud of you...but I am!!


Kittenb said...

Nancy, I admire your sheer determination, even when you are feeling let down or hopeless I always manage to see hope in your writing. Stay strong my dear, you can win this battle too.

Lynn said...

hey chickie, you are a fighter and you are in my prayers. i know it gets tiring and discouraging but you are not alone. smoochies!

RitaS said...

You will beat this thing girlfriend! You are one of the most determined, strong and courageous women I know! God gave you all these traits to help you through times such as these. He will walk beside you every step of the way...journeying towards remission - the race has begun! Press on towards the goal girlfriend - HUGS!

La Tonya said...

I so admire you Nancy and thank God for you daily. You are truly an inspiration and you make me realize I can win my fight, just as you will win yours! Hang tight chicka!
((((((((((((HUGS & PRAYERS)))))))))

Chris said...

Huge big gigantic hugs girl. I think of you often even with all our family is going through as well with Lance and just want to let you know that I'm here praying for you even if I am across the other side if the world and I know God is looking after you. Hugs!!!!!

TanishaRenee said...

Hey there girlie- just wanted to let you know that you are truly my inspiration!!! You and your family are in my prayers!!

Tammy said...

Just wanted to stop in and say hello, and I'm praying for you. I hope they get your meds regulated and you can be on the path of feeling good again. I know at least two people with MS who, with the medications, are doing quite well. I pray that will be you. You're a fighter. Keep fighting!