Tag: Disability

Mending Broken Dreams

Let Go and Let God

As children bring their broken toys

With tears for us to mend,

I brought my broken dreams to God,

because He was my friend.

But then instead of leaving Him

In peace to work alone,

I hung around and tried to help,

With ways which were my own.

At last, I snatched them back and cried,

“How could you be so slow“?

“My child,” He said, “What could I do”?

“You never did let go”…

Unknown

Yes, this is a very simple and maybe a little sappy (?) poem, but I love it. A good friend gave it to me while I was in school over twenty years ago now. I was away from my husband and two children (5 hours away!), feeling very isolated, trapped and out of place. I was the only student who’d moved to attend this OTA program, everyone else were locals. I immerced myself in my education with 3 like minded students (older) and we would become best friends with the top 4 GPA’s in our class. They knew me well and were very familiar with my PTSD story, as I am an open book! My friend slipped this poem into my hand saying, “I hope this helps you Margaret. You need to let it go”. I taped it to my bathroom mirror, where it remained for the next two years, water spots and all…

I’ll be honest, I feel it did help me…back then. I realized I’ve reverted back to ‘working things in my old ways’. My ‘broken toys’ back then, our lives after Mike was run over. Now though, it’s my Vestibular Disorder. I want my life back! I hate being dizzy…forever! I miss my impulsiveness! I miss dancing! I am a great ‘seated’ dancer, if I may say so. I see now, instead of calmly ‘taking my broken dreams to Him’, I’m afraid I just dumped it ALL on Him, I may have even just chunked some of it, with a touch of bitterness added! Yeah, that’s a prayer He would hear! “Here you go Lord”, (piling the load higher and higher), “Fix this! I’ll be back later to help…” I say as I turned my back and left.

Leaving my problems alone, even after I’ve ‘given it to God’, is something I just might be working on until the day I die! I want to be ‘all up in His business’, but I do believe He works alone…”Uhh, okay God… I’ve been dealing with this Vestibular crap since 2003 and it’s so difficult… It’s 2017 now. I just wanted to check in and see where You are on my miracle”? Surely, I’m not the only one living with a Vestibular or any Chronic Disorder who wants a miracle or at least, wants it all to just go away? Just wants it to stop? Simply desire your ‘old’ life back? And you just thought you had problems before a Vestibular Disorder?

Patience may be a virtue, but I often lack it, sadly. I’m great at ‘snatching back’ issues that I feel aren’t answered quickly enough. So… I’ve been doing more of a tug-o-war with God than truly giving Him my broken dreams? How exhausting! Is it because I now have a wheelbarrow full of broken dreams? What is more irritating than having work to do and someone interrups you, asking questions, “What are you working on now”? “How much longer until you’re through”? “How are you doing that”? That’s me…

I think I found this poem for a reason… I needed to see it again. I’m way too out of shape to do tug-o-war anyway, especially with God! I find myself bitter at times that I ever wound up with a Vestibular Disorder and I find bitterness doesn’t serve me well at all. If I am bitter, I know Depression lurks just around the corner, then comes anger. I can’t live like this, could you? It’s totally unhealthy, it’s ugly, and it’s isolating. My age too, has something to do with how I feel at this point of life. Just as I’m working (yes, still!) on ridding my life of physical ‘things’, my emotional baggage has got to go! I’m becoming ‘picky’ about what I ‘give my energy’ to.

I put a lot of meaning to this childlike poem but it is deeper than it appears. I am going to try this again. This time, I will gently place my broken dreams/life before Him. I will (try my best to!) forget about them, leaving Him to do his work (Come on, let’s face it, there’s a lot to fix!) for as long as it takes. I will practice patience. And I will leave Him to work alone, without insisting on ‘my old ways’ of fixing things. My way hasn’t worked anyway. While He is working, I will busy myself re-learning to enjoy life! Life as it is, at this point…

 

 

vestibular.org

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Using a Cane With a Vestibular Disorder Can Be Dangerous to Your Health…

With my background in Occupational Therapy, I should have realized using a traditional cane to aid in my balance was a poor choice. I think I just chose to ignore this fact. It seemed the least obvious, to others, of my choices. As compared to walking sticks,  a walker, a wheelchair, or a scooter. I would gladly use a scooter these days if they weren’t so cumbersome to load and unload. Some of you may be able to use a cane with great success, not me though. I was recently forced into using my cane while visiting my dad in the hospital, but while attempting to stop a spinning spell by leaning on the cane, I almost fell! When I put most of my weight on it, it failed me, or maybe I just failed. The cane didn’t support me as I anticipated. Instead,  I began a wobbly stagger in a circle…That red-hot flush of embarrassment hit my cheeks as I managed a feeble smile at whoever happened to see me. I thought I was over caring what people thought, obviously,  I’m not. I had to re-evaluate how I was going to tackle this…

There are so many options, but I was ill prepared. It was up to me, myself, and I. With each visit (2x daily most days for two weeks), I discovered some coping mechanisms that helped me and I wanted to share. Maybe someone can learn from my errors, I hope so!

  • Use a backpack instead of a purse. The first day, I left the house with my mug of coffee, my usual large tote, 2 newspapers still in their wrappers, and my cane. Not until exiting the car, did I realize I had more stuff than hands! The tote is cumbersome anyway (my life is in there!) and when worn on one shoulder, it throws off my balance. Then, I grabbed my coffee and cane. Oh, and the two newspapers. Off I go, quickly having to readjust myself, over and over and over again…Using a backpack frees up your hands and shifts your balance upright. It also held my tote, coffee, and anything else he requested! I ‘graduated’ to using a small crossbody purse after a number of days, which is a great option also.
  • Wear sunglasses. I’ve always had sensitive eyes and they not only protect our eyes from the sun, I find them helpful when maneuvering the sometimes overly bright, white hallways. White floor and walls are very disorienting to me. I used the colored lines on the floors (meant for patients) to help me.
  •  Fluorescent lighting is an irritating stimulus for most of us. Wearing sunglasses indoors can cause stares from people wondering, “Who do you think you are? A movie star”? I just tell them, “Why, yes I am and I’m incognito. Please don’t tell anyone”… Bad Margaret!
  • I found out (at the end of the stay), they offered wheelchair loans while visiting. No, I didn’t utilize them. Darn false pride! When the next time comes around, I will call the hospital and inquire what they offer, before going.
  • I did have a few people (mostly elderly) ask me why I needed a cane (as I’m such a youngster at 61 years!). I took the opportunity to briefly explain my Vestibular Disorder. All of them could identify with dizziness and one had Tinnitus. Never miss an opportunity to educate, you never know!
  • Ask for help if needed! It is a hospital after all.
  • Take care of yourself! Caregivers need care, too. I tend to put on the bravest face possible, so it’s difficult for others to understand when I’m crashing because I ‘look just fine’…Don’t we ALL since it’s invisible? I did crash a few days…Maybe I need to take my own advice!

The True Cost of Being Chronically Ill…Part II

As working, tax paying Americans, money is withdrawn from our paychecks, each and every time we are paid. We are told, that a portion of this money goes into Medicare. That we’d receive the benefit when we turned 65 years old…That in ‘old age’ we’d have some help with our medical needs after retirement…Medicare was never intended to be our sole coverage, it was meant to assist us. I grew up believing this. My career was cut short by acquiring a Vestibular Disorder. I made good money when I worked, really good money. If you earn no money, nothing is put into the funds. When I went on Disability, Medicare gets used prematurely. By the time Mike and I are able to retire, there will likely be nothing left of our Medicare System. The long, sticky fingers of our government have been slowly, but surely picking it clean for decades. It’s the ‘bait and switch’ game the government plays with our money. Funds are ‘borrowed’ from one ‘system’ and used for another failing ‘system’. I suppose this falls into the ‘life is hard’ or ‘don’t believe everything you hear’ or ‘yes, life sucks’ categories.

One thing I do know to be 100% true, not ONE person that has a chronic illness wantedto be sick every day, for the rest of their lives! Who would? Why would they? I will admit, that before becoming a chronically ill person, I did kind of enjoy the attention given to me if I had the flu or something. It gets ‘old’ being ill…quickly. As a young mother, I so rarely got sick it’s hard for me to believe what I’ve become. This was the ‘me’ before stress went from being a great motivator to something I could not cope with. Mike was in two near-fatal car accidents. We almost lost Sarah at 7 months due to a HUGE misdiagnosis and our Church abandoned us. All of this happening within a matter of just 3 years.

This near endless stress from this short time period obviously took its toll on me with my first chronic conditions, PTSD (Post Traumatic Stress Disorder) with insomnia. Most of us associate this with war veterans, but it can happen after any traumatic event. That was quickly followed by diagnoses of Depression and Anxiety Disorder. A 2 1/2 years separation from Mike and our children while I earned my OTA Degree and another chronic illness, IBS (Irritable Bowel Syndrome). I was diagnosed with Thyroid Cancer the final months of school and had surgery only 3 days after sitting for my Board Exam. No stress there! I would be diagnosed with Reflux and Ulcerative Colitis a few years later. My career as a COTA was a relatively short 12 years before my Vestibular and Fibromyalgia diagnoses. That was enough for me, more than enough and I never asked for any of it!

For me, the true cost of being chronically ill is not only financial but it’s been the loss of self. With each diagnosis, I lost a little piece of me. I’ve had to morph myself many times (wife, mother, caregiver, Therapist, back to the wife, now Disabled wife, and grandma). How do I do this, yet once again? Take a breath. Break down tasks. Listen to my body.

  • I begin by not allowing my illnesses define me. Of course, this is difficult on one of ‘those’ days but I try my best because I am so much more than a bunch of disorders.   You are too, never forget this!

  • I’ve  accepted that there will always be people who doubt me (remember, all are invisible disorders). These individuals are either uninformed or creepy people who make ‘fun’ of me or my situation. The uninformed are easy, I educate them. The creeps? Ignore them when possible, engaging with a person on that level will get you nowhere.  I have engaged with that caliber of person…I accomplished nothing more than embarrassing myself.

  • I have a number of books that are motivational, spiritual, and medical. I love reading books, real books. Education is power!
  • Journaling is so therapeutic. This is a way to ‘say’ whatever I want to whoever without ramifications. Only my eyes will see it.
  • I continue with my VRT throughout my day, as I’ve adopted a mindful approach to almost everything I do. A daily goal? Moving more without falling and I’m doing well with that!
  • I try to do something every day that I love and can still do, art! It can be a cool outlet for those living with Vestibular Disorders. In doing the drawing or painting movements, you are doing VRT and don’t even know it. You need to track the lines drawn/painted as they’re made to complete a picture. Have fun with this! Draw in all the planes, horizontal, diagonal, verticle or circular lines. Make your own pattern to use in your VRT or hang it on your wall!

                                                                  vestibular.org

The TRUE Cost of Being Chronically Ill…Part I

The state of our medical care, in America, has come to a ‘head’. We have two political parties who do nothing more than squabble with each other, playing with the lives of Americans. The chronically ill are entangled in a spider’s web, flailing about helplessly, as we’re entangled tighter and tighter, waiting to be eaten alive (by insurance and pharmaceutical companies). I think anyone who reads the news knows, before our recent election, we were told one thing and now, that seems to be changing…daily. ‘Nothing will be changing, we just are getting rid of Obamacare’ and ‘We will cover pre-existing conditions’ to the most recent ‘Pre-existing will not be covered’. Think about just that, the not covering pre-existing conditions. IF that does become our truth, Mike and I are sunk, and I’m sure we are not alone. I know we’re not alone! The last time we were in a situation of needing to buy our own insurance, we were told we were ‘high-risk’ customers now. Interesting, as it was the same company that had been covering us. It was going to cost over $1800.00 a month, which was more than was being earned at the time! Thankfully, Mike found work before we were forced to pay that utterly ridiculous amount.

Another year and yet, ANOTHER change in our insurance companies! In these 43 years of marriage, I’ve lost count of how many different companies we’ve had, I would guess at least one dozen. Each one with their own requirements and deductibles. Costs are astronomical for the ‘average Joe’ (us) and it appears the ‘benefits’ are more on the side of these companies, not us. Our medical communities are in burnout. Mountains of ‘red tape’ paperwork keep doctors buried and away from treating patients. Doctors are closing or limiting their practices due to the cost of Malpractice Insurance (‘everyone’ wants to file lawsuits, just watch T.V. ads!), slow reimbursements from Medicare, and new requirements to provide insurance if you employ ‘x’ amount of employees.  Mike lost his GP of 10 years when he decided to become a ’boutique’ physician. These doctors have said, ‘Screw all this’! They take no insurance and you pay a set amount (up front) for ‘x’ amount of visits. This type care is for the wealthy only. We may feel a sense of ‘comfort’ by being insured, but at what cost and to who?

Is a change in your medical insurance ever a good thing? Maybe for those employed by a ‘Top 10 in the USA’ company or those earning a great salary, it might be. Mike and I are just living our lives, ‘one day at a time, one bill at a time, one prescription at a time’. We live a modest life, a fairly solitary life, just doing our best to be good people. I know we’re not alone in a life such as ours, there are millions of people in our situation, struggling through life. I realize also, that many of you in other Countries, have very different Medical Systems than ours and even more Countries, with no coverage at all.  I’m simply saying, I had absolutely NO say in this matter and the new insurance has coverage that not only costs more but covers less! So, who’s side are they on? It’s a business, they want to make profits. Don’t we all?

Here’s an example of how our new insurance pays. Last week,  I refilled a prescription as usual. With our last insurance, the medicine cost $20.00 (how I budgeted it with a manufacturer coupon). And with our new one? $116.00…Yes, one hundred sixteen dollars, more than 5x what we budgeted! Oh, and they don’t ‘accept’ coupons. I was forced to go without that medicine for 3 days, waiting for our next check. DEEP sigh…I take seven prescriptions, this was just the first one I’d filled. Needless to say, we’re going to have to rework our budget as we begin the process of refilling each one…I’ve already received letters from the insurance company with their ‘suggestions’ for alternate drugs. I don’t have a problem with saving money, I need to save money. It’s that their suggestions are medications I tried and no change or had a reaction to it. The representatives I talk to, know nothing about me or my conditions, they are just reading a ‘script’ about ‘this condition or that condition’. Sigh…

*Continue reading Part II

For more information contact: vestibular.org

It’s Not Selfish To Put Yourself First

In your life, you’ve likely held many roles, such as a student, an employee or employer, a wife or husband, a caregiver to a parent. Life at certain times dictates that we put others needs first, such as when you have children. Of course, they have to be first, they are totally dependent on you and for 18+ years at that!. We, the chronically ill, have certainly been the center of attention for many months or years dealing with your Vestibular Disorder. I doubt that was enjoyable for you, all the questions, the testing, and a diagnosis you didn’t ever want in the first place. For me, it was two years of true Vertigo and Nystagmus and yes, all eyes were on me (watching me fall). This kind of attention can wear a person down. Privacy becomes a thing of the past. Even though it was done ‘for my safety’, it still  felt an invasion of my privacy. Being the center of attention is not the same as putting yourself first and doing so is not selfish, it’s you taking care of self. At some point, we have to put ourselves first and cherish the mind, body, and soul that needs nurturing. How do you take care of self, without feeling selfish?

As a child, I watched my mother give selflessly for all of her children for 18 years (x4). She was a stay at home mother, by choice, as she was a College-educated woman. She instilled us all to become self-sufficient adults, but somewhere along the line, I got the ‘message’ that it was selfish to put yourself first. Maybe because I don’t remember her doing that. Her role in the family was multi-faceted, but being the caregiver was her most treasured role. What a surprise that I too have the caregiver role in my family! Since my 2003 diagnosis, family roles have been thrown up in the air for sure. My husband (the provider role), had to hone his caregiver skills. He was an involved dad, changing diapers,  bathing, feeding, learning  you can do all kinds of housework with a baby on your hip! By the time I got ill, though, his skills needed some coaching. He’s since taken over the grocery shopping and most errands. He vacuums and mops, he’s a keeper for sure! He’s never says anything but praise for me and ‘all I do’ for the family.

Personally, I struggle with all my loses…but, I’ve  begun keeping a Gratitude Journal. I’m finding my lists of losses grows shorter as the gratitude list grows longer. I find myself being grateful for the ‘little’ things, such as surviving a recent two-hour grocery store debacle! Yes, I said two hours…the store had rearranged all the isles, so it took about 3x longer than it should have. In reality, this was a good thing, as it can be considered VRT. I was miserable after about 1-hour, but I was doing it, that’s something to be grateful for! I’ll be honest, I wanted to bail on Mike more than once and I was totally draped over the shopping cart by the end…I did it,though! Happy dance! I was absolutely zapped the next day, my head was swimming, I felt off balance, my out of shape body ached all over. In the past, I was getting massages 2x a month, but I can’t afford to do that any longer. So, how could I treat myself while having no money? One way is to get in our hot tub and relax. I am blessed to have a hot tub.  That was my gift to myself years ago (well, I guess it 2004 for the Fibromyalgia), so to use it now doesn’t cost a penny! It’s still a treat and extremely relaxing…

Some other ways to treat yourself for little to no money:

  • Take a bath or shower…linger…(light some candles, put in some Epsom Salts…)
  • Start your own Gratitude Journal (just a spiral notebook will do)
  • Sit outside and enjoy nature. Look above, below and all around. Then, close your eyes, taking in all the sounds and smells
  • Watch a new or favorite movie (Beaches anyone? Four Rooms?)
  • Give yourself an easy body scrub using sugar and vegetable oil (I do it in sections over a couple of days, as it does take energy to do a scrub)
  • A manicure or pedicure (even if you’re the only person to see it)
  • When was the last time you turned the phones off and read a book? Make it a ‘real’ book (not a Nook). I grew up with a home library with all the Classics and more. A book has such a comforting scent to me…
  • What about some ‘guilty pleasure’ T.V. shows? Real Housewives or Toddlers and Tiaras? Trash T.V. at it’s best!
  • I’m an Art lover and used to go to Museums, but now, thanks to the internet, you can take a tour of Museums from all over the world.
  •  If you can help another person, just one, do so. I can’t tell you how great this can make you feel! Can you really put a price on making someone smile?
  • Listen to your favorite music or try something new. YouTube rocks for this! The first 2 or 3 years of our marriage, music was all we had, as we didn’t yet own a T.V. I should have never bought a T.V. as watching it can be so consuming. It’s all about balance (it really is for us Dizzies!)…
  • Dig out that old hobby that was left by the wayside when you became ill.
  • Meditate…
  • Do some Yoga stretches. There are many I’m unable to do because a particular position makes me dizzy (Downward Dog)
  • Play dress up! When was the last time you wore high heels? I occasionally get all dressed up, just to lay in bed, because I miss my heels…I can’t walk in them, yet am not ready to get rid of them!

I hope you see the importance of taking care of self. We may not have control over many areas of our lives, but we can do something to make us feel better. If only for a short while. These Vestibular Disorders take so much out of us. Isn’t it time to put yourself first? Give it a try, I think you’ll enjoy it!

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