Meniere's & Other Vestibular Disorders

Diagnosed, April 3, 2020 but this has been going on for at least a year and progressively got worse. It all started out simple enough and I thought it was just due to me getting older, not hearing well and loud noises being bothersome. As time went on my hearing loss got worse, vertigo set in and those loud noises started to do more than just annoy me. I was first diagnosed with BPPV (Benign paroxysmal positional vertigo), put on medication to help me control it. Hearing kept diminishing and all my hearing tests showed rapid hearing loss, my audiologist said that she had never seen anything like it. She ordered a VNG (videonystagmography) to be done, this showed that I lost 31% of my vestibular system. My ENT referred me to a different ENT and I was diagnosed with Meniere's Disease.

Treatments? Right now I'm on a powerful diuretic and other options are either steroid injection in the inner ear or surgery to remove the vestibule which will cut off the communication between the inner ear and the brain. Basically surgery will make me deaf and sometimes I think that just might be the way I'll end up going anyway. Why? Because living with this is already difficult, noises are painful. The air conditioner running is bothersome, listening to tv is difficult or turning the light on in my bathroom which also turns on the fan is painful. My ears feel constantly full, constant tinnitus and dizziness and my medications don't always work so I am either stuck dealing with it or I just sleep. I also get headaches, more than I used to and I get severe ones sometimes upon waking up.

I think one of the worst things about this disease is not knowing when I will have a severe attack and because I have had one attack at the grocery store it scares me to go out. I have also lost the freedom to drive because of the fact that I never know when I'll have an attack, I could never forgive myself if I were to hurt anyone. So when people talk about their "Freedoms" are being taken away from them because they have to wear a mask, I do not feel sorry for them because they really do not know what it means to lose their freedom.

This is a rare autoimmune disorder, one that will never be cured and one that will only get worse like my other autoimmune disorders. How do I feel about this? My emotions are all over the place and anxiety and depression is at an all time high. Just when I think I have excepted my fate and try to organize and figure things out to get through it all I crash. I start asking myself "Why did this have to happen to me"? "What did I do to deserve all this"? Sometimes I think about ending my suffering as well as ending the burden I have become/will become to my family. I cry a lot, I'm all alone and just want someone too hold me and be their for me. I don't have that and I probably never will.

Cognitive issues are another symptom, not really sure if it's all because of the Meniere's or if it's a combination of all of my illnesses but I feel like I'm losing my mind. To a degree I am and that is so scary. I don't have the occasion forgetfulness like misplacing my keys or forgetting what you went into the other room for. I have moments when I can't put together a sentence without sounding like a kindergartner. Totally drawing a blank or unable to find my words and because of my Glaucoma and the fact that your eyes and ears go hand in hand I have issues finding things that are right in front of my face. It's not that I can't see per say but my brain is not making a connection.

I have to undergo a cognitive evaluation and working on getting tested for MS (Multiple Sclerosis) as well. If you are interested in more information on Meniere's Disease or any other vestibular disorders go to: Vestibular Disorders You are more than welcome to reach out to me anytime as well, just click on one of my Social Media Links.

IT'S BEEN AWHILE...

It has been awhile since I've posted, between my new diagnosis's, COVID-19, pain, flares and all of my other health issues I haven't been able to think straight. I'm tired all the time too and that doesn't help matters at all. So since February I have been diagnosed with Meniere's Disease which is a Vestibular disorder and have lost 31% of my Vestibular system.

To read more on these: 

Vestibular Disorders

Ménière's Disease

I have a B12 deficiency, Osteoporosis, Facet arthropathy. My whole body is literally falling apart and there isn't much I can do about it except continue to take my meds, get my injections and pray. It's to painful for physical therapy, I have a hard time taking a shower or making myself something to eat. Then there is the mental aspect of what all this is doing to me. Depression, anxiety and just felling totally worthless is very real for me and now with COVID-19 I am scared to even go out.

To read more on B12 deficiency, Osteoporosis, Facet arthropathy:

B12 Deficiencies

Osteoporosis

Facet Joint Syndrome

I have a lot of new symptoms that I need to see a neurologist about, chronic headaches, sometimes so bad that it turns into a migraine. I have a lot of neck and jaw pain as well, my legs hurt all the time and get weak very quickly. I don't have much of an appetite, I eat because I have to. Will start on a new treatment next week, Orencia infusions. Enbrel isn't working the way it ought to so I am hoping this will help bring me some sort of relief and I will still get my Methotrexate injections.

I will try to update as much as possible as well as give my feedback about my personal experiences with above diagnosis as well as my new treatment. But I suppose this is it for now...been at a loss for words and can't type worth a damn either.

RHEUMATOID AWARENESS DAY-2/2/2020

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GOOD NEWS/BAD NEWS

https://www.pinterest.ch/pin/436708495104455865/?lp=true

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....