The Long Story of Why

It never seems enough... what I have to say about things going on in my life these days is a struggle.I love where we live, love my hubby and my family, so that isn't the problem.  The problem is whatever is going on with my body.

I have trouble seeing now, my eyes are blurry from lack of tears. Not from crying, but from whatever I am dealing with... my mouth stays consistently dry, and no I don't have diabetes.  Literally, my tear ducts have gotten smaller and smaller as the eyes get dryer and dryer. Because of that, I have trouble focusing - and some days are much worse than others.  For that reason, I don't get on the computer much at all - which is also the problem with blogging.  I do miss doing it, but to be honest, about 5 minutes on the computer is all I can master right now. I went in to an eye Dr and he gave me some drops to use after Bethesda. We don't want to mess up any testing being done there... we will see how the drops help.

I go to the National Institute of Health in Bethesda, MD in April to see if they can help me.  So many problems... I have trouble holding things and typing now.  My hands don't work from some kind of weird arthritis (?) that set in after taking sulfa drugs.  I have been off of them for months now and I still have this problem, which also adds to me not being on the computer.  Typing has become an issue.  I can do it for short terms, but not for long and so many mistakes...  Between that and the eyes, I just don't play on the computer.

I swear I feel like I am falling apart.  Some days I get up and know it is an awful day. Unfortunately, they are getting more and more common. It breaks my heart to see Steve in the morning and have to tell him it is another crappy day. I am sick of me - how can he not be?

So about Bethesda.  How did I get to go there?  It all started with sinus problems. One side of my sinuses stays blocked all the time.  I went to an Ear/Nose/Throat Dr and he tried helping me with no luck.  He referred me to an immunologist/allergist.  I went, she questioned me and immediately said I had an immune problem.  However, she did allergy testing on me, but told me prior to testing that she suspected it would come back negative.  It did.  Even the false positive was negative.  I ran into that problem at another allergy clinic in Baton Rouge YEARS ago.  However, this immunologist didn't let it rest with, "hmmm, this is weird..."

She took blood.  And she called for me to go back and give more blood... and more... I have LOTS of blood.  59 vials when I finally started counting!

My blood work looks all peachy and great... my bad cholesterol is good, my good cholesterol is good, sugar is great... everything looks super - until you get to the lymphocytes.  I have gone for an extensive health exam every year for 10 years now.  There have always been some questionable things on my blood.  Lymphocytes were always a 'little' off, and my C-Reactive proteins were always way off.  However, not one Dr questioned the lymphocyte problem.  Not one!  Apparently, maybe they thought I had a little infection going on each time, but no one realized I had 10 years of crappy lymphocyte counts!

This Dr saw my lymphocytes were down and she did a subset count - dividing the different sets of lymphs and seeing which part was down.  My CD4+ count was non-existent and another set was low.  She didn't believe the results and tested again.  They were lower.  So, she tested for AIDS/HIV.

NEGATIVE.

She called another Dr.  They retested for AIDS/HIV.

NEGATIVE.

They did other testing and a different blotter test for AIDS/HIV. Ask me if I am panicked at this point.

HELL YES!

EVERY test has come back NEGATIVE on AIDS/HIV.  Confirmed negative, cross checked, double checked and triple checked by every AIDS/HIV test available.  The tests are negative.

So my blood work was turned in to the CDC.  They confirmed all the results.  I am definitely AIDS/HIV negative.  They turned it over the National Institute of Health in Bethesda, MD.  Ask how scary it was to call Jewish Medical Center and National Institute of Health (NIH) and they already had all my records and they have been 'confirmed'...

When I finally braved it up enough to contacted NIH, they were already in the process of putting together a 'team' and were getting ready to call me.  HUH?!  They took 1.2 nano seconds to 'invite' me to Bethesda for further testing.  So, that is how I got accepted.

I am scheduled for multiple CAT scans, blood work, DNA testing, x-rays, a biopsy of my saliva glands (complete with stitches), numerous other tests and I will see at least 7 Drs while I am in Maryland.  They are going to try to see if there is some other reason my CD4+ count is so low.  They suggest I may have a mast cell problem as well as my blood disorder... or Sjogren's Syndrome.  Not sure what the mast cell problem is and too skeered to ask.  Sjogren's makes some sense - and I do have 10 of those symptoms - but it is a result of my CD4+ count -  not the cause of it.

Anything I have is secondary to my blood disorder.  My blood disorder, in case you are interested is once again; Idiopathic CD4+ Lymphocytopenia.  If you read up on it, it is not serious - unless you have a CD4+ count like mine - it is 61.  300-350 is critical.  There is no cure; IGiV's will not help, blood transfusions won't help... nothing to help the count grow.  Apparently, once it is this low, there is no fixing it.  Had it been discovered before the 'critical' level, they could have helped.  Not now.  Every stinking Dr I see says the same thing.

So, since October 31st, Steve and I have been 'processing' what is going on with my body and what to expect.  We have stayed on top of my continuous sinus infections, bladder infections and any other infection I might have pop up. Simple little things like if I get a scratch that gets inflamed, my body cannot fight infection because it doesn't have a clue there is a problem.

That leads to another problem I am having.  ANY antibiotics I take seem to make the 'arthritis' problem worse!  I have to take antibiotics to live, so how can we deal with this other problem?

We are trying to find Drs to work with Bethesda when I return.  Not an easy chore... no one knows what to do with me exactly.  I have a few good days, but mostly really crummy days where I feel like crawling under the covers and sleeping it off.  We both agree staying busy will help.  I try to stay as busy as I can, but sheer exhaustion stops me in my tracks.  I have never felt fatigue like I do right now.

So that is my long story.

Steve and I had a weekend where we talked a good bit.  I am discouraged because I have let my blog go as long as I have and I don't really know where to start it.  I decided to let you know the crappy things going on in my life and start there first so you can have some idea of what we are dealing with.

I will post as soon as we get the results from Bethesda.  Thankfully, I am staying with a dear friend over there.  We will try to see a bit of DC while we are there, but I don't think we will try to see much.  I am just not up to it. 

The next few months will be sketchy posts with random stuff that has happened in the last six months and what is going on now trying to catch you up.  It probably won't make a lot of sense, but I am bound and determined I am going to get it up and running again so I can regularly post.

I guess that is all I can do unless you have other suggestions.  Feel free to offer them.  This post has taken me weeks to finally get out.  I want to blog!  But I had to get this crummy stuff out in the air.

And say a few prayers for me. I think my blood could sure use them.  :-)