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.

OPEN LETTER TO THOSE WITHOUT AN AUTOIMMUNE DISEASE

Having an autoimmune disease means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about autoimmune diseases and their effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

Please understand that having an autoimmune disease doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to do so.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.

Please understand that the effects of autoimmune diseases are variable. It's quite possible (for me, it's common) that one day I am able to walk to the bathroom and back, while the next day I'll have trouble sitting up. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you.

Similarly, my autoimmune diseases may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Autoimmune diseases may cause a secondary/reactive symptom like vertigo, nauseousness or tremors. Telling me that I need some fresh air and exercise is not helpful and not appreciated - if I can do it I will.

Please understand that if I say I have to sit down/lie down/take these pills or shots now, that I have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. Autoimmune diseases do not forgive their victims easily.

Please understand that I can't spend all of my energy trying to get well from my incurable autoimmune diseases. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. The important part of having autoimmune diseases/disabilities is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with an autoimmune disease/disability.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different autoimmune diseases and disabilities. If something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

Please understand that getting better from an autoimmune disease doesn't mean being cured and doing all the things I did before, getting better from an autoimmune disease might not happen at all. People with autoimmune diseases have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

Please understand that my grief is not linear, this monster disease is not linear either. I will go through times of anger, depression, isolation, denial, etc...Please be patient with me.

I depend on you - people who are able-bodied - for many things.

BUCHANAN (n.d), "But most importantly, I need you to understand me".

This is an adaptation of the original Open Letter: BUCHANAN, R. (n.d). OPEN LETTER TO THOSE WITHOUT A CHRONIC ILLNESS. Retrieved from http://notdoneliving.net/openletter/id

ACCEPTANCE & POSITIVITY

I have been mulling over this disease that I have and while still not quite excepting of it I have succumbed to the fact that it is a part of me now and will also define me. I am still very much who I was before this hit me but with a twist. I was born with medical issues and had challenges all my life so why not this too!

I visit and talk with my doctors more than I do my family members and friends now. My social life is in the clinics and ER and what is really scary is people know me by name! I really don't get out much because I never feel well (not the normal person's "I don't feel well" either) and I'm afraid I'm going to fall out in public, I've had that happen once before.

I have been trying to think about ways that this incurable illness has been good for me, which is really hard to do. So here we go...

1) I have made some incredible friends and even though we can't hang out in the normal sense of "Hanging out" we share our illness, sadness, pains and small victories together.

2) I have a few family members & friends that I have had for many many moons that are very supportive and I don't know what I would do without them. With their help I have managed to pay some bills, do laundry and get much needed essentials (Toilet paper 💩)

3) Learning new words like "Spoonies", "Rheumy", what SARDS stands for, and so much more. My vocabulary has grown in ways I didn't think was possible and who says you can't teach an old dog new tricks! LOL!

4) Even though it makes me feel horrible at times because I feel like I should be doing more to contribute to the household "I LOVE NAPPING"! I don't need an excuse anymore to do it because when my body says "STOP IT" I have to listen or it will make me pay for it later.

5) I have never been one to like "dressing up", clothes are so restrictive and uncomfortable. Now I can wear comfy things and not feel horrible about it and if someone doesn't like it, to bad! Which reminds me, I NEED MORE LOUNGE PANTS & HOODIES 😊

That is all I can think of right now off the top of my head. I know most people think that it must me nice to not have to do anything all day but what you do not understand is that I have to "FIGHT" my own body everyday all day, 24/7 365 and there is no end to it. There is no remission for me, only a glimpse of relief once in awhile before the ugly monster rears it's ugly head again.

I am also doing my very best to work from home, some days I can't, some days I can only work an hour or two and some days I can complete a whole 4-5 hour shift. I take the small victories when I can get them and live to fight another day on the days I don't.

I have no idea what my future holds for me and that is ok, it will be a surprise everyday. Sometimes good and sometimes bad, can not have one without the other. I will do my best, that is all I can commit to.

LIFTING THE BURDEN

It was not my plan so early in my life to become a burden to my family and friends. I did not ask to become incurable; I did not ask to be constantly sick and in pain. I planned on working hard, playing with my grandchildren and helping my family and being there for my friends. I had that, I had the great job, I got the business degree, I had the perfect automobile to run around with my minions and then I lost it all.

I did not do this to myself, I do not drink, I do not do drugs either so why did this have to happen to me? All I want now is to no longer be a burden to anyone, make their lives easier by me no longer being in it. You may think this is selfish of me, it is not because my death is inevitable anyway. No one would have to worry about me and be free to live their lives. I also wouldn't be reminded daily how much of a burden that I am. Not by everyone but those who do, it breaks my heart. My heart does not break for myself, but it breaks for them because I am causing their grief.

I am not and will not take my own life but if there is a merciful God I wish he would just let me come home.

THE BEGINNING OF MY JOURNEY

No truer words than the ones in the picture above, I was only 48 years old when all this started happening to me or at least started noticing something was really wrong with me. My journey actually started in 2016 when I was hospitalized with Angioneurotic edema, 2017 with inflammation of lungs and then 2018 with Diverticulosis and rectal bleeding. I continued to get sicker and got to the point where it became difficult for me to move because of joint and muscle pain/weakness. October 2018 I was let go from my job at Grainger, they could no longer hold my job and at that point my health kept declining. November 2018, after many doctors and specialists I got a diagnosis of Seropositive Rheumatoid Arthritis (RA), Fibromyalgia, Carpal Tunnel Syndrome.

March of 2019 I seen an Ophthalmologist because my vision is blurry and I have eye pain. I was diagnosed with Optical Nerve Atrophy, the nerves in my eyes are extremely thin and was told that I am a "potential glaucoma patient". My primary doctor, who also suffers from RA, told me that I have what is called "Systemic Autoimmune Rheumatic Disease" (SARD). This means that my disease doesn't just affect my joints, it is effecting my whole body.

I am slowly losing my hearing and recently had a Brain MRI done which showed that there was nothing wrong with my auditory canal but did show White Brain Matter Disease suggestive of microvascular ischemic disease or old demyelinating disease. Which explains my constant dizziness, balance issues, cognitive, tremors, and speech problems. I have to get a second opinion because my current neurologist doesn't think it's an issue.

Through all the medical issues I have I also am having financial problems. I won't start back to work for Swiss Colony until September 28, 2019 if I'm able to, depends on what my body will allow me to do. I am fighting for my Social Security, I have Becker Law out of Madison, WI working on the case and I am thankful to have Senator Tammy Baldwin's office assisting me as well. My unemployment has ran out and in Wisconsin there isn't an extension.

The constant stress, depression and anxiety that I am under trying to maintain what little I have left is not doing my body any good, it is actually making my disease progression worse. I am always trying to figure out how to pay my bills, pay the co-pays for my medications and take care of my furbabies. I also know I will never be the same person I was 4-5 years ago and my body has failed me so many times I now have Post-Traumatic Stress Disorder (PTSD). I get horrible panic attacks when I have to leave the house or when I start feeling dizzy because of episodes I have had which left me unable to move or see straight.

I have chosen to write my story here and to reach out to everyone for help.  I do not know how long it will take for Social Security to get approved and I don't even know if I will be able to hold down a job. Whatever you are able to help me with will be much appreciated, I am in dire need of help. Here is a link to my Paypal account I will make sure it is on every page of my blog.

paypal.me/moon6801