Tag: Vestibular

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!
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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

Success, Large or Small, Is Still Success

I don’t consider myself a ‘whiner’, although it may come across as just that when I talk about living with a Chronic Invisible Vestibular Disorder. Now, that’s a mouthful in and of itself! I’ve talked about the many things I am no longer able to do (with ANY sense of confidence, anyway), that I forget the things I was/am able to do. Just because I deal with dizziness and imbalance daily, doesn’t make me ‘useless’. Just because I can no longer work for pay, doesn’t make me useless. I think I’ve proved to myself, by starting this blog, that I can write. Mother would be so proud! I think I’ve proved I can step outside my comfort zone by becoming an Ambassador for VEDA. I’m part of an Online VEDA Support Group Network. Now, I’m helping an aging parent. Can a chronically ill person really take care of someone else? Time will tell…

Whether or not it comes to fruition, a recent request to use ‘my’ story for the Vestibular Disorders Associations/VEDA newsletter, made me remember something. During my years of undiagnosed Vertigo and vomiting and taking tumbles that resulted in broken bones, I did accomplish something, a really big thing! Somehow, during one of the worst times in my life, I designed and made our daughter’s wedding dress. Ten yards of fabric, 748 gold beads, 372 pearl beads, 3 fabric roses, fully boned corset style bodice with a hand picked zipper=one totally extravagant wedding gown! Less than one yard was used to make the bodice (top) and NINE yards was used in the skirt! How on earth did I do that?! Did I ‘will’ myself to do it? Was it a miracle from God? I’d say, a little of both…

In my now 61 years of living, I’ve had more than one career, not that surprising. My first (and most important) career was a stay at home mom. Prior to becoming an OT Assistant, though, I actually designed wedding and evening gowns for over 10 years. I’ve sewn since the age of 7, an apron with matching potholder was my first project. I was taught sewing by my mother and her mother, the seamstresses in our family. My grandmother taught me all the finest couture techniques (hand work) during my Summers as a teenager. As a young mother, I became part of a Designers Guild, putting on multiple fashion shows a year. I thought it was glamorous and it was a blast! It was a lot of work, but I loved it. Our children sometimes watched me constructing the gowns from the other side of a ‘kiddie gate’.  We all know these barriers are only useful until they learn to climb over it! More than once, Lewis ‘helped me’ by removing pins that held fabric EXACTLY where I wanted it on the dress form, then re-pinning the fabric into his design…Working out of your home doesn’t always work… I did this long enough, though, for Sarah to expect me to design hers one day. I think my feelings would have been very hurt if she’d wanted to buy one, Heaven forbid!

When that day came for her many years later, I had to do it. I just HAD to! But, it would take me 3x longer than in the past, because I was so sick and still undiagnosed. My ‘usual’ timetable for an original gown would be around 3 months or more depending on the complexities of the design. Here’s some of my process from when I had my business. I met with the client, listened, looked at their magazines or pictures. Then, I’d sketch out a few designs, meet again, and they’d pick one. From there, I took a ‘million’ measurements (kidding…kind of!) and made a pattern from a special paper (NOT the tissue paper you get in a store pattern!). Once the paper pattern was made, the entire gown is cut and constructed from muslin fabric. The muslin gown is fitted and altered (it better not need altering!). Then, it’s disassembled to become the pattern. All this is done prior to cutting the gown fabric. I learned this the hard way! I HATE to alter gowns, absolutely hate to! My work is meticulous. My gowns fit! I loved to show the client how the inside of my gowns was just as beautiful as outside (couture work)!

Oh, I did complete Sarah’s dream wedding gown, but I was working on parts of it until the last second. As in, literally the last second! I did most of the beadwork over the months while sitting in bed, a tray full of golden beads with needle and thread ready to sew. Mike grew fairly tolerant of waking up with gold beads stuck to us in the morning. Actually, any and all handwork was done on my bed or the couch, which was the bodice/top of the gown. Sarah had lost so much weight during the making, that it was likely half of that by the end, the dress is a size 0! You know, that made up dress size that didn’t exist when I was young…  Then, I had to gather the remaining 9 yards of fabric for the skirt and attach it onto that tiny little top! Ugh! It weighed a ton! It was hot! I was so sick and oh, was I tired!

Finally, all that was left to complete was the hem. Again, under normal circumstances, I would have done this by hand. Beautiful. Delicate. Invisible. Yes, all 9 yards would have been hand hemmed, but not this time. I used my serger and did a machine hem. Oh, the shame! Oh, the horror!  That’s all I had left in me, a machine hemmed gown for our daughter…A serger is a machine that both cuts and sews a seam or hem like they do in factories. Go ahead, check the seams of your garments…It’s a very cool machine and I love it, but not for Sarah’s dress. But this time, I did. Zzzzzzzzzzzz….I was almost to the end of the hem, only about one yard left. It started dragging and I started pulling. “This isn’t happening!”, I screamed in a pitch that hurt even my ears.  The cutting blade had become dull, no longer cutting the fabric properly. I pulled that damn fabric through it, though. Yes, yes, I shredded some of that last yard, but it was done!

The finishing touch was to hand sew a label my mother made for us (with her computerized embroidery machine), which read, “Made With Love by Mom”…And that it was! So, I did accomplish some things during one of the worst periods in my life…Huh! Think about it… I’ll bet you too, have made accomplishments during these very trying times that you may have forgotten or not given yourself credit for. You got out of bed today? You showered? You played with your children? You were actually able to work this week? Big or small, they are still your accomplishments, celebrate them!

For more information please contact vestibular.org

When Push Comes To Shove…

It might appear I’ve ‘fallen off the earth’ or something, not posting for so long. I put  ALL my health issues on the back burner, so to speak, in order to help an aging parent for awhile.  I’m not putting my needs second, necessarily either! I’m taking care of myself but I am pushing myself outside my usual boundaries. It is good for me, or so they say! In doing so, though, I realized something interesting. When ‘push comes to shove’, I actually still can do more than I give myself credit for. When a loved one needs me, I’m there. Period! There’s that caregiver role in me since birth. Even if another sibling came, I’d still be here (yes, I think I’m all that)! But right now, I’m stepping outside the comfort zone of the four walls of my home.

Mike drove me here (and delivered me like a piece of luggage) before he returned home. I’m used to being driven around by others. I choose not to drive myself places. I have two places I will drive myself at home. Of course, they’re doctor’s offices and very close to home.  I can take ‘back roads/streets’. But driving myself via highway…Absolutely not! Too much space, too many vehicles, too many lines, too much fast moving peripheral visuals…I prefer to be a piece of luggage. Mike will be back to retrieve me in a few weeks if all goes as planned.

Yet now, I am the one driving my parent to their appointments via ‘back roads’ that is! It took a bit (I think quite a bit) of explaining to them all the things I can’t do or prefer not to do. Examples such as…’no curving roads, no roads that go uphill, no roads that go downhill’…I take the back streets. It is a route I could drive comfortably. We have to leave the house earlier as it took longer, of course, but my parent is both gracious and grateful for my help.  I love to take care of others, it gets me ‘outside of myself’ for awhile. Doing this does make me tired, no doubt, as my brain is working overtime. I take the time to care for myself by taking a nap daily, but baseline, I am pushing myself to do my new personal best. Temporary as it may be…

I also needed to do a flip-flop with my (un)usual night/day routine to accommodate a ‘normal’ day’s appointments. I literally do not remember the last time I was in bed at 10:30 (well, I tried to go to sleep then)! I’m up every day by 8 am. I forget how much I love the mornings…I cook our meals, very simple but very healthy. I’ve really surprised myself with all I have done, but there was so much more I wish I could have done. I tend to compare myself to my sister who possesses an internal drive like no one I’ve ever met. She would have cleaned the entire house. She would have done some yard work, and cooked a month’s worth of meals! I did about one weeks worth…I’m not kidding. She has a seemingly endless energy source…I  remind myself, ‘that’s how she is and this is how I am (now)’…It’s not a healthy way to live, comparing ourselves to another who isn’t living our lives.

I still have days I struggle with the limitations of living with a Chronic Vestibular Disorder. On the trip here, I envisioned myself going for walks but the more I thought about doing it alone…I couldn’t make myself do it! My voice of negativity crept in, “What if I get dizzy and tripped”? “What if I fell”? “What if I sprained my ankle”? “What if I fell and couldn’t get up”? After all, I’ve had all these happen before. I talked myself right out of that activity! I tell myself over and over, “I am doing everything I can do…today…and that’s okay”!

The things I was able to make myself do were, get them to their appointments on time, drive them home, make our lunches and dinners, and the biggest thing I conquered was the grocery store…alone! I parked next to a basket return area and grabbed one right away. I gripped the handle so hard at times, my fingers would go numb. I knew my body and brain were overloading, so I just move to the side and act like I’m doing something so important…Time enough to breathe a few deep breaths before heading on…As I said before, I know this type activity is good for me, even therapeutic, but I hate it!

After these few weeks of ‘pushing’ myself, I’m feeling it! I’m glad I’m here, helping my parent in the way I am able to help. It’s not the same way ‘others’ might, but that’s fine. I am happy doing it MY way! I hope you too, will feel, enjoy, and appreciate your own victories, be it large or small, it’s still a victory! Go ahead, give yourself a ‘pat on the back’, you deserve it!

For Every Step Forward… Another Awaits

I am still recovering from the Holidays of 2016, how about you? Were you able to be part of it or was your world too topsy turvy to enjoy it? I do know, I’m happy to say goodbye to last year and ‘HELLO!’ to 2017. I have many hopes for this new year, one of which is to become more active. I have a new pair of Keen shoes I won as part of VEDA’s 2016 ‘Defeat Dizziness’ social media campaign, just waiting for me to use! Not that I haven’t worn them already, I just love them for the comfort and they make me look fit! Our treadmill awaits me…Yep, still there…Dang, it! Just waiting for me to take a step forward because another step awaits!

We had a lovely Christmas, my greatest gift being a dizzy free 2 week period! Our grandsons were here for a full two weeks, which is both a blessing and a curse. The younger grandson came with a cough, which always terrifies me. I can’t help fearing illnesses after the way I contracted my Vestibular Disorder (through a sneeze). Regardless, I accomplished so much in those 2 weeks, that just didn’t happen in previous years. I decorated our home (after Mike and Lewis brought it all down from the attic!), put up a tree (again, Mike and Lewis) and actually decorating it (this, I did do alone). Unexpected emotions took me over as I unwrapped ornaments. The majority of them were given by my mother. Her gifts were always so thoughtful and personalized, even her Christmas ornaments, which she gave us every year into adulthood. Bittersweet memories and many tears later, our tree so beautiful in the end. I really couldn’t make sense of my ‘non-dizziness’ that was going on, but I was going to go with it! I made Chocolate Truffles and my ‘trademark’ Vanilla Lavender Shortbread, three batches over the two weeks of feeling, dare I say, good! I actually went with Mike to a store for a little shopping (note I say ‘a’ store. A single store, with a list, still using the shopping basket). I’ve done 100% of my shopping on Amazon previous years, so to actually get out and to actually shop was exhausting, but I did it! I wrapped gifts. I attended the family Christmas dinner at my brother-in-law’s home and actually enjoyed myself! All the things I consider ‘Christmasy’, I was able to do…What was going on with me? Should I even question not being dizzy?

Some might say, “You did half what I did. What’s the big deal”? Well, the big deal, the huge deal is, for the past number of years, I was unable to do any of that. My home didn’t have one thing to even insinuate Christmas too many years. When I was feeling so horrid, I could have just let it pass altogether, but with children or grandchildren looking to you to make it happen, it’s difficult. For those of us dealing with Vestibular Disorders, the Holiday Season presents so many triggers! The lights, the sounds, the smells are all wonderful IF you can handle it. Smells are either wonderful or noxious to me when I’m nauseated. My husband can say, “Mmmm! Doesn’t that smell good? Do you want some?”, as I’m literally gagging from the odor. This is an odd ‘side effect’ from throwing up for so long prior to diagnosis and never went away. I’m left with a ‘hyper gag’ reflex, meaning I gag a lot! Certain smells, thinking about something gross, seeing something gross, all of these make me gag. I can laugh about it at times, but when it happens in front of others, it’s very embarrassing. Lights are another trigger. If they are non-blinking lights, it doesn’t bother me, but blinking or strobe type lights do me in. It seems there’s a trend for increased movement with Christmas lights. Homes now have lights that move to music! While this an amazing accomplishment, is not enjoyable for me to watch…at all!

So, I have these two great weeks at Christmas, the timing perfect, just before Christmas and almost a week after. Then I got a cold (remember our grandson with a cough?). While it passed quite quickly with about three days of head congestion, it brought back dizziness. Of course, if I’m sick, Mike also gets sick. We were well for only a short time when it hit us again, but this time with a vengeance! We never ran a fever, but we felt like we had the flu. No, it was ‘just’ Bronchitis…I’m still plagued with a nasty cough, but we’ve finally rid ourselves of that mess! My OCD came out during this sick period, using up a can of Lysol, and cleaning everything with Clorox (over and over and over…).

What did I learn from this recent bout of illnesses? I learned (yet, again!), if you’re sick, you’re sick! Give in to it. Meaning, listen to your body and treat it accordingly. Miss work if possible, you will only pass it on to others and possibly catch it again (like us). Mike’s job has no sick leave (seriously), so when he missed one day of work, he has to work a double shift to make it up (seriously? Not one day for illness in 365 days?). But taking that one day off, to take Nyquil and sleep around the clock, made a huge difference! Taking care of ourselves seems like such a no-brainer, yet how many of us actually do this 365 days a year? How many people and responsibilities do we put in front of ourselves? For me, it’s more than I can count, I even put things I can no longer do, on my to do list…why? Old habits, old messages of what I should do. These are things I have a hard time keeping in their place. Being a full-time mom tends to make us become that person who puts their needs on the back burner. I used to joke years ago, when our whole family was sick, “Mom can’t be sick…”, but the truth is, we sure can and we do! We just don’t ‘show’ it, right? If I was sick, who’d take care of the family? ME, of course! This was when our kids were young, prior to me having anything, of course! As life has its own jokes to play on us, Mike is now the one to take care of us all…

For now, I will focus on and be grateful for those two weeks of non-dizziness. I will be grateful for all I was able to accomplish during that time. I was so grateful for getting my tree up and decorated…it’s still up! Oh my, isn’t that bad luck? Too bad, I’m looking forward to a fantastic 2017. It may have begun with a couple of bumps in the road, but my excitement over the new year, ‘trumps’ anything! (pardon the bad pun, but I couldn’t resist!).

My Biggest Surprise!

2016 was a crazy year for myself and Mike! The year will go down in (our) history. Not that we haven’t had challenges throughout our marriage, but dang! This year was a doozy! Almost everyone has something, don’t we? But in the midst of our chaos, the coolest thing happened… You, my dear readers! YOU happened! Somehow, you found me! Little ole Margaret! VEDA has been tremendously supportive of my blog and they post it regularly. I post it to Facebook, Linkin, and more. I still never thought anyone would actually read it! When I began this blog, it was really more as an ‘open’ diary. Just me writing about my life with a Chronic Vestibular Disorder and other things that happened along the way. Writing has always come very naturally to me and this seemed an appropriate outlet for me. I guess it was. My heart is bursting with gratitude this holiday season!

When I see that people from Countries I was unfamiliar with, people from literally all over the world, are actually reading my posts…It was my biggest surprise of 2016! I am elated when people comment and share with me. I feel this is HUGE because it proves we are not alone in dealing with these monsters called Vestibular Disorders. Between the Facebook Vestibular Groups I’m part of, and my work with VEDA as an Ambassador, it has become very clear, the number of us dealing with the disorders is crazy! What’s supposedly ‘rare’, turns out not to be as rare as the doctors thought.

When I discovered VEDA/Vestibular Disorders Association, I thought it such a fluke. I’d researched myself dizzy (hahaha) attempting to find more information about my Disorder. Don’t we all do that? Attempt to diagnosis yourself? Second (or third) guess your diagnosis?  Doctors are ‘lacking’ in their training of Vestibular Disorders. I knew of only two or three Disorders myself prior to diagnosis and it seems too many doctors have this same knowledge base.

How many of you have been told you have Labyrinthitis? Then, after not improving, another doctor says it’s Meniere’s or BPPV. Who do you believe? The medicines we are often prescribed can carry terrible side effects, sometimes worse than what we first ‘complained’ about. My first ENT was so very ‘old school’ and I’m not young myself, but even after 2 ‘positive’ Caloric Tests, Nystagmus almost constantly, throwing up round the clock, multiple falls, 7 broken bones, he would not give me a diagnosis. Why? Maybe I was faking all of it? I thought, back in 2003, I was the only one dealing with this type of ‘care’. How wrong I was!

There are around 1500 of you, from all over the world, who read my blog regularly and over 5000 who have read it! Say what? It’s shocking, validating, heartwarming, and empowering to me all at the same time! I thank you for making my year so rewarding and memorable, each and every one of you! I wish the very best for you in the upcoming year, be it finally getting a diagnosis, finding a cure, finding the support you need, or if you’ve just begun this journey, remember you are not alone. Happy Holidays to all, and to all, a good night!

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If you have not yet signed our petition for Vestibular Patients for Smarter Doctors and Better Patient Care change.org/…/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care please take a moment to read it, sign it, and we love your comments! Thank you! And as always, VEDA has the most comprehensive information out there!

vestibular.org

Our Story…

Has a song ever ‘spoken’ to you so deeply that you felt it was written about you? I heard this song on a favorite T.V. show, “Grey’s Anatomy”. Okay, okay! I’ll admit it! I’m addicted to “Grey’s Anatomy”. I’ve always been interested in medical shows, both real and fictional. Maybe it’s because I’ve worked in and around hospitals for so many years. From my early teenage years, volunteering as a Candy Striper to my high school years Work/Study Program as a Nurse Aide, I’ve been around hospitals. I thought I would become a Nurse, that was certainly the plan. Instead, I married Mike at 18, I certainly found my voice then! Maybe it’s all the time spent in hospitals during  Mike’s 2 car accidents and Sarah’s car accident? One would think, I’d had enough. Nooooo! I seem to be obsessed with medicals dramas that put me in a state of panic, anxiety, and dismay! Why would I continue such dysfunctional behavior? I do it, partly because of my obsession and partly because they (sometimes) throw in a ‘happy ending’ story and who doesn’t love a happy ending?

I recently watched a re-run episode and cannot get this song out of my head! “Grey’s Anatomy” is known for the music played within the shows, but this episode was an actual musical! The first time I saw it years ago, I didn’t get it. I thought it was kind of silly. Maybe it was my mindset, who knows? This time, though, it hit me like a brick wall! One song, in particular, continues to haunt me…”The Story” by Brandi Carlile. First, the melody stuck in my head. Then I had to find the video on YouTube. I have watched probably 10 times! Then, I  had to find the lyrics. I said I was obsessed!  But I  find this song is so ‘us’…Because we all have a story to tell. Each story, just as important as the next. I’ve included an *excerpt* from it. Does this give a ‘voice’ to your feel at times?

The Story 

You see the smile that’s on my mouth

It’s hiding the words that don’t come out

And all of my friends who think that I’m blessed

They don’t know my head is a mess

No, they don’t know who I really am

And they don’t know what I’ve been through like you do

And I was made for you…

All of these lines across my face

Tell you the story of who I am

So many stories of where I’ve been

And how I got to where I am

But these stories don’t mean anything

When you’ve got no one to tell them to

It’s true… I was made for you

Written by Phillip John Hanseroth • Copyright © Warner/Chappell Music, Inc

I encourage you all, to tell your story. Whether it’s in your  private journal or a public forum such as your own blog. I have always found writing cathartic, so give it a try.  My story has sounded like an episode of “Grey’s Anatomy” at times!  Yes, I do have chronic illnesses, I also have had many happy endings! Life has changed since my Vestibular Disorder came knocking , no doubt, but finding my ‘voice’, has given me power in a sometimes powerless situation. Try to find your voice because we’re listening!


http://www.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