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As working, tax paying Americans, money is withdrawn from our paychecks, each and every time we are paid.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

Advertisement

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

What The Hell Is That Smell?

Hyper ‘smell-a-vision’, as I call it, is something that occurred when I became ill with the Vestibular Disorder. As if the Vertigo, the vomiting, and the falls weren’t enough, my sense of smell became alive. I smell everything now, real or imagined! Now, I have more of a smell/gag reflex and it drives Mike crazy. “Hell, I’m the one living with this!”, I remind him over and over. Food was a huge part of our lives, we loved cooking gourmet meals together, dining at fine restaurants with a good bottle of wine. That was then, this is now. Is this a side effect of the original infection? If it traveled to my inner ear (in your brain!), why not to the Olfactory System? Who knows, but it does affect my life. It affects my appetite. It affects my willingness to go out where smells might be, as silly as that sounds. I’m weird, I know.

I’d noticed this funky smell in my kitchen recently every time the dishwasher ran. I use vinegar as an inexpensive rinse agent for the hard water in our area. So this was a vinegar AND another funky odor smell. I thought I’d try a dishwasher cleaner, that would surely resolve it. No, it was still there. Maybe it was the disposal? We don’t even use the garbage disposal, but maybe our grandsons put something in there. So, I bought a garbage disposal cleaner (how many different cleaners do they make?). And…it’s still there! I persisted with the “I smell something funky in my kitchen” rant. Mike looked at the dishwasher and said, “It just has two screws holding it in, I’ll look at it on my days off”, which brings us to today. His ONE day off this week due to a change in schedule.

Well, to begin, the dishwasher had SIX screws holding it in, not jus two. After removing the last screw, the footplate fell off and dark water flowed out. GAG! We weren’t prepared for that! The scatter to locate our old ‘ring style’ mop and bucket looked like a Three Stooges episode, us all running in different directions! I use a steam mop now, happy to be rid of that mop, so it was finally found in the shed outside. Mike partially pulled the dishwasher out and stuck the mop in. The mop came out very dirty (GAG!), but only damp. I shone a flashlight in the cabinet. “I thought there wasn’t water in here Mike”! He comes back quickly, “There’s wasn’t”! “Mike, there’s water all over the floor and it’s still coming in”! I’m such a help with my flashlight, doing nothing but pointing out the horrors yet to be known. There was water, though… He pulled the dishwasher completely out.

We mopped up the water, but where was it coming from? With the dishwasher out, he could check all the hoses and hookups. Thank God, I have him to do these things, as I don’t like’dark and dank’ places (does anyone?) and lacking the funds for a professional to fix this. One by one, he carefully cleaned, dried and checked each hose and connection. They all appeared fine, so he did a ‘test’ run using only the rinse cycle. It made sense at the time…The cycle completed and began to drain, we gathered around as if it were the most interesting event ever! Everything seemed to be working properly. The question remained, where did that water come from? Ask, and ye shall receive…”Mike! Water is running back in”! His response contained way too many expletives to write, but let’s just say, he wasn’t happy…

Upon closer inspection, we realized the water was coming from behind the cabinets! Behind the cabinets is a sheetrock wall and behind that wall, the main plumbing…This is going to be a MAJOR job! We (Mike and our son, Lewis) will have to fix it, working under the sink, inside the cabinet, to cut a hole through both the cabinet and the wall to discover whatever else awaits us…THIS is how Mike spent his one day off, then had to leave it in disarray, until a later date…I have much more important things going on at this same time. My dad. I will be driven back to his house for a number of weeks on Monday. Sometimes, when you think you have it bad until something worse happens, it puts life in perspective. This is one of those times. I have no doubt it crossed Mike’s mind, “I wish she’d lost her sense of smell instead of her balance”. But no! I get a hyper sense of smell from…a virus? Explain that, if you can, because I sure can’t!

This was just a ‘day in the life’ of post. Would it be any different if I weren’t dizzy on a daily basis? Of course not, but I might not have this ‘Bloodhound’ nose, though. Am I glad we found this out sooner than later? I suppose. Is there ever a convenient time to have a disaster happen? As it stands now, we are without kitchen plumbing. Dishes are done in two dishpans in a bathtub, for now. So wish us luck learning how to DIY plumbing, sheetrock repair and reinstalling our dishwasher, we’ll need it!

I just had to know what that funky smell was…

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!

********************************************************************************************************************************************

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