Tuesday, March 21, 2017

Don't Eat THAT! Or THIS...

I have Idiopathic CD4+ Lymphocytopenia (ICL).  All of my friends and family know that.  But Immunodeficiency problems are not entirely uncommon - the medical community is just realizing they need to be looking at the immune system more.  My immunodeficiency is rare, but not CVID, SCID and so many others.  I want to educate people on Immunodeficiency so one day a week (Wednesdays) I will try to tell you a bit about it.  Today, because ICL affects me, I am going to elaborate on what *I* deal with on a day to day basis.

Immunodeficiency means part of your immune system is broken.  Your immune system is largely what causes your blood work to register what is right and what is wrong.  If your immune system is broken it is often difficult for the medical professional to look at blood work and get a good 'feel' of what is going on.  So blood work is definitely a problem with me.  About the only thing that is nearly always accurate is my t-cell count.  And it keeps dropping.  Nuff about that for now...  

If a medical person is not knowledgable about immunodeficiency, then you have to be the one to explain what is going on to them, AND you have to hope they listen and don't take the Dr 'I know more than you do' stance.  

Diet. Did you know an immunocompromised person has to really watch what they eat?  HERE is a good general idea of what we have to pay attention to.  

It gets worse!  The link below is one my Dr referred me to.  Because I basically have no immune system, it is like I have had chemo (I haven't) (but chemo drastically compromises the immune system), so the more in-depth diet I have to follow looks more like THIS.

A few things that I have to watch:

I shouldn't eat at a buffet.
I shouldn't eat jalapeno cheese because peppers in it is raw.
I shouldn't eat yogurt with live cultures.
No more over easy eggs for me.
Bacon has to be well cooked.  As in nearly burned.

Too many things to mention, but you get the idea.  Food is a real problem for us.  We have to be sure every reasonable thing has been done to keep germs away from it.

Now think about eating out... 

Is the table clean?
Are the dishes clean?
How about the silverware?
Salt & Pepper shakers?
Parmesan cheese?  All the things sitting on the tables... yeah, don't touch them.
God help us if there is a problem (illness, less than sanitary conditions, etc) with the cooks... 

I was sitting in Pizza Hut waiting on my personal pan pizza and a young child reached over, grabbed the Parmesan cheese container on his table and LICKED THE TOP!  His mom fussed him, wiped it off with a napkin and put it back.  *sigh*

I usually ask for "to go" packets if I need one of the table condiments.  How many hands have touched all of them?

I shouldn't take probiotics - live good bacteria... but my body doesn't know good from bad... (try this when you are on 24/7 antibiotics)

Immunizations?  Guess what?  I have no immune system so immunizations are useless for me - you have to have an immune system to build an immunity, right?  Think that one though.  Tetanus?  Flu?  Pneumonia?  Hepatitis?  I had all the overseas immunizations and the Dr tested me for them less than 5 years into them.  I did not even show immunity to one of them.  She gave me 3 more and in 3 months, more blood work.  It was like I had never had them.

It gets better.  Any immunizationw with a live virus is off limits to me.  Better than that, I can't be AROUND anyone that has HAD a live virus immunization for 3 weeks.  Now how the heck am I supposed to be privy to that information?

I am not the only person with ICL / HIV Negative - there are less than 100 of us known to the National Institute of Health.  We are not contagious.  There is very little known about why we have this but they suspect it is genetic.

My entire life, I have been sick, but even more as an adult.  Immunodeficiency is a difficult life - whether it is ICL, CVID, SCID, or any other immune system deficiency.

So now you know just a bit more about my struggles.

I am not alone.  I have friends that have immune deficiencies.  However, they are all online friends.  I actually "know" no one in real life.

We exist.

And finally, immunodeficiency is represented by a zebra.  Isn't that cool?  

Taken from the Immune Deficiency Foundation:  

"The primary immunodeficiency community often identifies with zebras. This is based on an old saying. In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with PI are the zebras of the medical world. So IDF says THINK ZEBRA!"


And THIS FOUNDATION does everything in their power to help us muddle through the muck - and there is a lot of muck for us.  Paperwork, lab work, Drs, Specialists, insurance problems, insurance refusals, medicine funding, and just moral support... 

Enough for today's lesson... tomorrow, back to the fun stuffs!

No comments:

Singapore Memory Project