Snowballs from Hell

In August of last year, I was in the process of being diagnosed with a very serious blood disorder.  October 31st, 2014 was the final diagnosis... I had Idiopathic CD4+ Lymphocytopenia - ICL for short.  Yeah, you know that...

After much searching I have finally found a Dr that will work with me.  He cannot cure the ICL, but he can help me with other things.  He understands the seriousness of it and the fact that we have to act with urgency when I get any infection.  He understands a 'cold gone bad' could kill me.  We all get infections, right?  My body cannot recognize I have one, so we have to stay on top of any infection I get.  He gets it.

This Dr was looking at my bloodwork and asked if I had lupus.  "No..."  "Well, it sure looks like you have lupus..."  I came home thinking I had found a quack and immediately e-mailed NIH in Bethesda to tell them I had found a new Dr and he suspected lupus, was this possible?  "Not only possible but likely..."  

Really??  And you were going to tell me this WHEN?  

"Oh, and by the way, your biopsy came back positive for Sarcoidosis as well."

Snowballs from hell...

I look normal.  I "don't look sick" - haven't we all heard that?  I am sick.  I don't have the energy to get out of my own way.  I cannot fight through all the crap anymore.  I don't have the drive to drive myself to the grocery store. I have about 2 good hours in a day, then the fatigue overwhelms me and I just want to crawl into a hole and sleep the rest of the day away.  

I try to fight through it - honestly I do.  I cannot explain the exhaustion I feel.  I cannot explain the constant ache to the burning bone I feel.  I cannot explain the hopelessness that comes over me when I don't have the energy to look at a sunset. 

No, I am not depressed.  I am sick.

And what makes me sicker is thinking back at all the Drs that let me down.  I have had low lymphocytes for 12+ years that we can prove.  That was from my yearly comprehensive physicals.  My lymphocytes were low on all of those!  Had a competent Dr seen that, they would have questioned it and we would have found the ICL before the 'critical' stage.  Critical meaning they can no longer help me.  My foundation is gone.  There is no building with no foundation.

I  used to have constant yeast infections... had they questioned that, they would have found lymphocyte issues.  I quit getting those and started getting thrush.  Had they questioned that, they would have found my t-cells had dropped to a critical level - those are the signs.  Constant yeast implicates low t-cells, thrush implicates a drop in t-cells.  Constant sinus infections... yeah, immune problems.  Not getting well regardless of what I did until I got an antibiotic?  Immune problems.  6 weeks with a cold... immune problems.  12 years with a sinus infection?  Immune problems.

I had a Dr that said my 'asthma' was in the small cells in my lungs and said "it was very odd"...  Had he questioned that and run more tests, he would have found the answer was the sarcoidosis.  I had pleurisy for over a year.  Yeah, that was a sign as well.

Gut problems.  Immune deficiencies... 

Many, many Drs dropped the ball.  Now they cannot help me.  *I* am not a Dr... I couldn't catch it - I am not trained to.

People who see me just see me - they don't see the scared shitless me - the one who has no idea how to turn this around.  The one who has been told over and over "there IS no turning this around."   Read on AIDS and CD4 counts - in essence that is what I have - not really, but it is what I have to look at to get a glimpse of what to expect.  I DON'T HAVE AIDS and I don't have HIV, but what I have is similar.  Read on down to where the CD 4 count is - and then see what it says when it is 41; "all of the above" - then that. There I am, at the very bottom of "all of that".  PLUS apparently I have lupus AND sarcoidosis.

Again, I am NOT CONTAGIOUS.  If I was, half the world would have it - and there are only 45 of us known in the US. 

Did I say this Dr suspects that the Sufla reaction I had in October was actually what started a lupus flare and is what is causing my hands and feet to be numb and my bones to burn? 

I am HIV negative; but with a CD4 count of 41, the prognosis is not good.  Add the other crap that is snowballing and... yeah, well, that is all I am going to say about that... pity party over.

Anyhoo, yesterday, I was talking to Steve about how to manage everything; my fatigue, how to use less 'spoons' to save for the things I really want to do and forget the stuff that really doesn't matter.  I don't have the energy to do it all and I cannot muster the energy to fight through to get it all done.  So, I will have to choose my 'spoons' more wisely; I am going to rest when the body requires it and not feel guilty.  I am going to blog, sew, watch tv, garden, scrap and visit with my friends and family that 'get it' and do the stuff that I really enjoy and when I feel like doing the other stuff, I will do it.

In the meantime, Steve is seriously considering retiring.  I need him at home.  He needs to be home to help out.  We need each other to get through this.  It is tough on us.  We have our dream home; a house in the country and lots of land to care for.  We have critters and chores.  The reality is this is not easy.  I don't look sick, but we see just how sick I really am.  We know.  Others have no clue.

And we are hoping this new Dr can help whittle through some things so I can get through the lupus flare (if that is what it really is) and get me to feeling better.  I need to feel better.  I need to be able to enjoy my life...

'Cause I love those sunsets.

The snowballs keep coming and I needed to vent.  

Tomorrow, I update you on Stephenie.