The Decision…

In the above picture, the story goes, I said to one of my cousins, hands on my hips, “You’re not the boss of me”! Oooh, Little Miss Sassafrass!  What a little spitfire! What happened to her? I search deeply into my eyes for that Margaret, with that spark, but what looks back are eyes that have been through a lot, seen a lot. Too much for just one person, one family to have lived through in 43 years of marriage. Mike is my main caregiver, yet has survived 2 near fatal car wrecks, the first was a rollover with ejection from the truck. The second, a drunk driver ran into a crowd hitting Mike. He was drug under it for 75 yards. I watched in horror as he disappeared into the darkness. We had just been sitting and talking…Here’s an example of how different we all are, I wound up with PTSD and Mike has nothing after that experience. I wish my Vestibular Disorder was the only stressor in my/our life, but it isn’t.  I wish so many challenges hadn’t been put upon us, it wasn’t fair, it wasn’t right. But, if I hadn’t gone through them, I wouldn’t be who I am today, either. I struggle to find my identity, my new identity.

So much time has passed since my diagnosis in 2003, you might think I should just have ‘accepted’ it. I ask you, would  you just accept it? Don’t you think hope would remain? We are all survivors in this game called life, in one way or another. For some, just to wake up another day is something to be celebrated, and it should! Others, like us, too often wake up with a feeling unrested, having a ‘foggy’ brain and the sense of uncertainty (will I have symptoms today?). If we’re lucky and it’s a no symptom day, then, we celebrate! If we wake to a world off-kilter, the feeling is more  one of dread. I chose hope and I am a person of Faith, so I hang in there another day. In all this time, though, Science and Research chugging along, making progress with certain Disorders and continued confusion with others. I feel the biggest confusion comes from doctors  not taught nearly enough about the Vestibular System (the 4 Systems involved). I could never have become a doctor, their responsibilities are mind-numbing! The truth is, if something doesn’t change, there will only be more people in my position. Then, they too will be forced to make a decision.

The decision to go on Disability was one I did not take lightly. First, and foremost, I felt shame. I worried what others would think about me. I know people using the ‘system’, people who didn’t really need it and that pissed me off. Obviously, I didn’t want to be perceived as one of ‘those’ people. It was seven years of working to ‘get well’. Seven years of keeping up my Continuing Education and license, because I was going back to work, after all. Yeah right! It was seven years of learning everything I possibly could about both my Vestibular issues and the Fibromyalgia diagnosis. I have no doubt, I had Fibromyalgia for over one decade before diagnosis. Their overlapping symptom? Dizziness. I changed so many aspects of my life in this attempt. I changed my diet (just a healthier diet), my sleep habits (sleep hygiene), and tried to lower my stressors (never happened). I started numerous exercise programs, but my balance continued to hinder my success with anything but yoga (Downward Dog is out). Discovering the Wii did more than just games, I found the ‘evaluation’ Wii used, addressed balance and it was fun! Hmmm…I need to reclaim it from the grandsons’ bedroom, bring it back into the living room. After seven years, I gave up the concept of returning to work and began the process to apply for Disability. Was I one of those people now? Oh, what shame…

I did have help with the massive amount of paperwork, not a Lawyer but a Social Worker. I’ve heard nightmare stories of people’s attempts to obtain Disability. Lawyers are puking out  television commercials to ‘help’ you get what’s needed, what you and I spent our lives working for. Every paycheck, it was taken out of our checks, like clockwork. What really sucks, what about all the women who chose to be a stay at home mom? I was one for 15-years, and I loved it. I took pride in doing it, but it left me with huge empty chunks on my Social Security. $0.00 is your value while raising children here.  In the USA, to qualify for Disability, it must be ‘proved’ that you will never be able to return to work. Now that, was a big pill to swallow, never…really, never? Actually, you can try to go back to work with a 9-month window allowed.

For me, I was approved the first time and paid  3 months back payments (don’t get mad!). I have no idea what was done (or not done) differently, but it was not the stressful event my mind had imagined. I feel for those who are having difficulty with the process. Because when you feel like we feel, we do not need this extra stress. Part of the problem is political. I feel our money has been tapped into one too many times.

My Vestibular issues aren’t my only health issues. I also deal with Depression, Anxiety/Panic Disorder, Fibromyalgia, Sleep Disorder, IBS, Ulcerative Colitis, Reflux, with the PTSD and Vestibular Disorder to round it all out. Oh, and I also had Thyroid Cancer in 1994. I was still in school when the doctor called with the “Margaret, you have Cancer”call. I had 2 months left to complete my rotations, for school to be over! I gave him the, “I’m too busy right now. I’ll get back with you” answer. Stupid, very stupid I know! I had the surgery 2 days after sitting for my Board Exams. Putting this all down on paper it’s shocking to even me! It’s crazy, I know, but some of us are just that lucky…I want to scream at the top of my lungs to all my illnesses, “You’re not the boss of me“!

 

 

http://www.vestibular.org

 

 

 

 

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4 thoughts on “The Decision…

  1. Oh I feel for you………I’ve had this since I was 19, wasn’t diagnosed til I was 29…….It was a Dr. whom I had after my last child, and had post partum depression, got through that, but told him about my “dizziness”, which now you say “Vertigo” instead…..otherwise they take it as falling over, and just a spell…..but I have Ototoxicity, don’t know what happened, but did all the tests, MRI was done, to rule out a tumor, but have chronic sinusitis, allergies, back is shot, from working as a nurses aide for many yrs., but with all that said, it is a daily struggle to keep your mind focused, and try and do things, but it gets overwhelming, and since I was so young, I feel like my life got taken away from me………I have 3 beautiful children, and 2 beautiful grandchildren…….but to live with this, and not be able to enjoy things without feeling so anxious, and Not a normal person anymore……..is hard to accept sometimes………it has gotten worse with age…..my eyes are giving me problems……but I keep on doing what I can……what more can we do???? Just wait for a miracle…….when some Dr. or one of the millions of people in the world finds a solution……….wouldn’t it be great??????/

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    1. Thanks, Crystal! Boy, the Ototoxicity sounds terrible, but I thought it came from meds or chemicals…No? Hang in there another day…it’s worth it with all your blessings! Take care!

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  2. You really have been through the ringer haven’t you? It’s funny looking at your symptoms and conditions, they so closely mirror mine. There has got to be something in that, something they are overlooking. It’s scary how little is known. Be strong!

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    1. Yes, in many ways I have. But life is always worth living 😊. I just hate what my children went through at such a young age, they’re grown, but I still hate it. Just always try to follow the light (whatever that may be, but it’s good! Thanks for reading and commenting, I love to hear from you 😊

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