RHEUMATOID AWARENESS DAY-2/2/2020

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GOOD NEWS/BAD NEWS

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Those of us dealing with a chronic illness/pain are all to familiar with the whole "Good News/Bad News challenge and while good news is really great you just know there is that per-verbally shoe that is about to drop.

My lower back/hip pain has gotten so bad that I can not walk a block or stand long enough to make something to eat without extreme pain, numbness and losing the ability to walk without holding onto something. Had a bone density test done to rule out osteoporosis and osteopenia. Good news that my test came out normal, Bad news is we still don't know what is causing it. Could it be my Rheumatoid Disorder/Disease? Could it be Ankylosing Spondylitis? By the time anyone get's this all figured out it will probably be to late because:

A). I'm a woman-It is a known fact that when it comes to anything medical they either think a woman can't get the same illnesses as a man or because when it comes to their medical studies that's how they learn, by using the male form. Men and women are biologically different, if we weren't then why aren't the men having the babies?

B) A "White" person is also biologically different than a "Black" person and if you are of mixed race like I am then you are really screwed. Again when it comes to many years of medical science and studies all baselines are that of a white person. Granted we are all "HUMANS" however their are differences in our DNA structure.

Take Ankylosing Spondylitis for instance, according to medical professionals it's a predominately "Male" disease and this is not the case. A.S presents differently in women just like signs of a heart attack is different in women so it's harder to diagnose and is often overlooked. 

The blood test HLA-B27 is not the same in white people as in black people. More blacks are diagnosed with A.S without having the HLA-B27 gene where as the majority of whites that have the HLA-B27 gene have A.S.

So not only are "Autoimmune Disorders" difficult to diagnose as a whole no matter what race you are it's even that much harder to diagnose in a female/female of African-American decent or a female of mixed race. I have genes from both parents, don't the doctors ever take that in consideration?

To read more please visit: Ankylosing Spondylitis

CHRONIC ILLNESS/PAIN STOLE MY DREAMS...

I'm not going to dwell on the past or give a life long story of why I say this but I will say I had my life mapped out before I got sick.

I finally got a great paying job with benefits working for Grainger in Janesville, WI. 401K, life insurance, awesome health care, etc...even had my dream car, 2010 Nissan Rogue. It was red, roomy and beautiful!! Just what I wanted to haul my minions (grandkids) around in, haul groceries and go on trips. I even went back to school and got my associates degree in business so I could move up in the company.

I wanted to have everything planned and payed for in the event of my death so my kids didn't have to deal with it like I did with my parents and I wanted to be able to leave them something behind. I only have one parent left and that is my step-mom, I don't call her that because to me she is my Mama. I was blessed to have two Mamas and I wanted to be able to help her and take care of her now that my Daddy has passed away.

Sadly all of my dreams have died because of my illness and I have lost everything. I don't get to see my kids and grandkids like I used to anymore, I have to rely on everyone else to help me and give me rides to where I need to go. My Mama, bless her heart, helps take care of me the best she can and she is still working. I had to go on public assistance and I have to rely on the Non-Emergency Medical Transportation System to get me to my appointments, and there is a lot of them.

Working from home is a hit or miss at best and I have been denied SSDI three times, the third time I had a lawyer and it was still denied by the adjudicator at my hearing. Now we are appealing the decision, someone like myself shouldn't have to go through this while people who are drug addicts get the benefits. That is a story for another time though.

So while everyone may look at me as being a "MALINGERER" I am not. I didn't screw up for all this to happen to me, my body failed me and I got to sick to work. I had to give up everything, what wasn't taken from me, just to survive this far.

WHO I WAS BEFORE MY AUTOIMMUNE DISORDERS?

Me being a tourist when I first moved to Chicago

I admit, I wasn't a perfect angel and had my ups & downs but I was more and able to do more before I got sick.

In Chicago waiting for a train

My Associates Degree I worked hard for.

I worked hard, managed stores in Chicago, I climb ladders, lifted and carried items much bigger than myself. I kept a clean house, decorated for every holiday and graduated from college with an Associates Degree in Business. 

Me shopping for Halloween at Walgreen's

Me with three of my minions

Halloween at Grainger (I worked there for 3 yrs before my illness and was let go)

I could stand and sit for hours on end depending what my job required of me. I used to ride the L-train and catch buses in Chicago to go to work, to the store, to take care of my grandson when he was little and ill. I could walk miles down on the Navy Pier and everywhere else without a care in the world. I've helped and been there for friends, family and strangers, donated to causes and even walked for Breast Cancer.

Me at one of many stores I managed in Chicago, IL

My Cousin & I at Breast Cancer Walk

I ran around and played with my grandchildren, could run up and down stairs and take a shower without needing a nap. I used to go grocery shopping without having to worry about losing the use of my legs. I loved taking the kids trick-or-treating, to the fairs and Williams Tree Farm to see Santa. Now I can't do any of those things without getting dizzy and nauseated. 

Playing outside with my babies

At the Apple Hut

Holding my newest minion

I wanted everyone to know I was and did a lot more than I do now, that I'm not lazy but truly ill. I mourn the person I used to be, I miss her very much and would give anything to be her again but there is no cure for me. I struggle with this everyday.

Went to Portage Theatre in Chicago and met Svengoolie

Me with Swiss Colony's Chris Mouse

My business card with Staples in the Tech Department

HEMATOLOGY UPDATE

Well, good news is my cortisol and bone marrow test came back normal bad news is we still do not know why I have leukocytosis. The investigation continues!! Sometimes I wish we could just nail all that is wrong with me down even if it is bad so at least I know and can start on treatments. My hematologist said it could be many different things as well as different autoimmune diseases. I won't see him again for awhile for a follow-up on blood work or sooner if more goes wrong with my normal blood draws at the clinic. 

This will be continued at a later time....

LEUKOCYTOSIS/IMMUNOCOMPROMISED PATIENT

So, recently (10/28/2019) I had to see a hematologist/oncologist because my blood work over the past few years have been consistently out of wack. I was diagnosed with "Leukocytosis" which means that for some reason my bone marrow is constantly producing more white blood cells than what is "normal". I have also been listed as an "Immunocompromised patient" meaning that because of my illnesses, medications or combination of both my immune system is very weak making it difficult to fight off infections. I MUST BE VERY CAREFUL-even the slightest infection can carry the risk of hospitalization or death.

I know this sounds odd seeing how my white blood cells are supposed to take care of the infections but they are not doing their job and when I go back to see my hematologist/oncologist he will be able to figure out why this is happening and what we can do about it.

I also have a constantly high RDW (Red Cell Distribution Width). This means that my body isn't producing enough red blood cells and the ones that it is producing are larger than normal. This too can have a high impact on my health and is normally caused by inflammation and or malnutrition. This can lead to cardiovascular disease and cancer of several organs.

As I know more I will provide updates on this. It's scary and the amount of emotions that go along with this is overwhelming. 

To be continued....

I HATE IT WHEN...

What do you say to someone who tells you "At least you're not dying". I HATE IT WHEN PEOPLE SAY THESE THINGS TO ME!! I am incurable and my life expectancy has been shortened by these autoimmune diseases that are slowly destroying me on the inside. Here are a few more things I wish people would stop saying to me:

1) Be positive-I do my very best to be positive every single day whether I can crawl my ass out of bed or not. I try and sometimes fail but at least I am not giving up.

2) Get out and exercise-Seriously? Sometimes I don't have the balance to get from my bed to the bathroom without falling over or I'm incapable of wiping my own ass because it hurts to move my arm in the position in needs to be in.

3) Change your diet-While I have gone through some dietary changes it's hard to totally eat properly especially when you can't stand up long enough to prepare a meal. Not to mention that food is so damn expensive and when you don't have the income to eat expensively healthy you do the best with what you have.

4) At least you don't have cancer-While cancer is a horrible disease and has taken many people that I love it isn't necessarily going to kill you immediately either. Many people go into remission for many years and live normal long lives. It's the same with people who are diagnosed with autoimmune diseases, it's a roll of the dice.

5) Things could be worse-The only thing I can think of that would be worse is if I were 6-8 feet under and even then it wouldn't be worse for me but for everyone else that loves and cares about me. NO...I do not wish this nor am I suicidal but what could be any worse than living each day in constant pain, dizziness, nauseated, headaches, numbness, being clumsy and not on purpose, not being able to walk at times. The list goes on but I won't.

6) I know how you feel, I'm tired too-NO...there is a difference between being tired and fatigue. LOOK IT UP!!

I just wish people would think and educate themselves sometimes before they speak.