The Waiting Game

I think all of us have played ‘the waiting game’ in one way or another and I realize… I suck at it! I’m playing it right now, waiting on the results of my recent Stress Test. I certainly didn’t plan to do the Stress Test, we should but rarely do, none the less, I had one earlier this month. Ironically, I find it very stressful waiting on results.

This all began the day after our off-grid vacation, oh so typical for my life. I had a routine appointment with my Mental Healthcare doctor. The nurse took my vital signs and I was so busy talking about our vacation, I didn’t ask what they were. Besides, they always seem to be the same anyway. When I was called back, the first thing my doctor did was take my vitals again, which has never occurred. I sarcastically asked, “What’s the matter? Am I dead?”. He just looked at me like a deer in the headlights and took it again… and again… and AGAIN! He sat down and asked if I felt faint or light-headed. “No…why? What is going on?” I asked, panic quickly setting in. He said my pulse was ‘dangerously low’ at only 40 beats per minute. This was really odd because I have a benign type of tachycardia (P.A.T.) which is a very fast heart rate that hits out of nowhere.

My visits with him are, in general, around 15 minutes because he is the doctor who ‘medically’ manages my issues of PTSD, Depression, Anxiety, and Insomnia with drugs. I would have to go elsewhere to talk with a psychologist. If this sounds stupid, it is but this is what our insurance pays for… Anyway, within a matter of minutes he tells me, ‘As a Geriatric patient, your body has built up the Xanax (anti-anxiety med) and I want you off of it by next week…’ First off, my brain shut down when he called me a Geriatric patient. I will fall into this category soon enough but I’m certainly not there yet! He asked if I thought I could do this and I said yes, I thought so. I did say, “You remember I’ve been on this forever, right”? My Geriatric brain was still stuck on my ‘classification’ and I forgot to ask any questions. Better yet, he told me he was going to be ‘gone’ most of the month. I shuffled out of his office. Now it was me looking like a deer in the headlights.

The first thing we did was purchase a blood pressure cuff and I made a call to my regular doctor. Sadly, I just went off and he got the brunt of my frustration. “My heart isn’t beating right! The other doctor said…”. This is what I love about him, he’s calm, soft-spoken, knowledgable, and he listens. Even when I sound like a fool! He’s in excellent health and has a resting pulse in the 40’s. I reminded him how unhealthy I am… He gave me a schedule to titrate me off Xanax. Dang, I was totally stressed out now!

The next day, I made an appointment with Mike’s Cardiologist. I still felt like nothing was truly wrong but that new blood pressure cuff verified something was wrong with my heart. My readings either gave a low heart rate (still under 50) or it said ‘Irregular Beat’, not reassuring at all. Oh, yes, Mike was taking his blood pressure with me but his reading were clear, definitive. I actually got into the doctor within a few days. My first visit was what I expected, a detailed history and an ECG (Electrocardiogram). He informed me there was an ‘irregularity’ and he wanted to do a Stress Test and have me wear a Holter Monitor (a portable loop recorder ECG worn for 24+ hours). I’d have to wait (again…) two weeks for the testing. This is the type of waiting that brings anxiety to me. Sigh…

Doing a Stress Test, has been something Mike has pushed me to do since he was forced to have stints placed a number of years ago. I really doubted my ability to physically do a Stress Test. I was ready to give it my all on test day. It was just the doctor and I in the room. I reiterated my Vestibular issues and he was unusually understanding. He also made a point to show me where I had an Emergency Stop button and we began. The treadmill faced a window which I thought would be a plus, it wasn’t as it made me see a ‘false’ horizon. I’d just acclimated to this illusion as he sped it up. I was concentrating so hard on this, I forgot a quick head turn can be a trigger. He asked me questions throughout and I answered him staring straight ahead. So, when he asked me something (I don’t even remember what), I turned my head and WHAM! A full-blown Vertigo attack hit me, I tried holding on tighter when it suddenly stopped. The doctor knew immediately what was wrong so he hit the button. “Dang it! Oh, I’m so embarrassed, please let me try this again…please, I know I can do it when I get over this”! I was pleading to do something I had resisted for years. “No, I have enough information…”, he said as he left the room. I felt like a failure. Before I left, the nurse put the Holter Monitor on me, I just wanted answers AND assurance, I am okay.

It was almost another two weeks before I got my answer, a very stressful and anxious two weeks. He began with, “There is definitely something wrong but it’s not life threatening”… Uhhh, good news? He told me I have PVC’s (plastic pipe, what?) Premature Ventricular Contractions. We all have a ‘battery’ in our hearts called the Sinus Node. It puts out an electrical signal but in my heart, the signal gets ‘confused’ in the Ventricle Chambers. I know, I don’t fully understand it yet but the oddest part of this is, my heart is beating ‘normally’ but if you take my pulse, it will never be accurate. You have to listen to my heart itself for accuracy. Oddly enough, they don’t know the cause, it’s most common in ‘white women in their 60’s’, oh good Lord! I’m on a very low dose of a medication to help with electrical function, time will tell… I go back in another month and will write an update then. Until then, I will be meditating more…

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Oh,Yes I Did!

Last week, Mike and I went to a concert, the first one since acquiring a Vestibular Disorder. That means, it’s been a very long time, as I was diagnosed in 2003. It’s amazing the things we allow to go by the wayside due to our Vestibular Disorders and it’s really quite sad. We love music, all kinds but our favorite type is good old Rock and Roll! So when I heard Melissa Etheridge was/is doing a 25th Anniversary Tour of ‘Yes, I Am’, I had to find a way to go. This album came out the year I graduated from the OTA Program, so I was still living in Austin. It was on cassette tape, do people even know about cassettes anymore? Google it. I played mine, almost continuously, until it came unwound, twice! Just how badly did I want to go this time around? My desire to see her for the fifth time overrode any sensibility.

I bought tickets well ahead of time, so I could sell if I realized I couldn’t go. Just as I began thinking, “How cool is this?”, anxiety began creeping in. All the ‘what ifs’ spun a web in my brain trying to strangle my desire to go. I decided to be proactive instead of reactive. I know, I sound so ‘deep’ but it’s really not that hard to be proactive, I’ve just become lazy. The first thing I did:

  • Educated myself on the venue we were attending as it was our first time there. This was very easy to do via the internet. Complete with photos and a video. We were on the 2nd level, so I knew that meant stairs. Elevators were also available.
  • I picked aisle seats because I didn’t want to try maneuvering myself in front of someone and possibly falling into a strangers lap… I don’t know, it might have fun! Hahahaha!!!
  • Accept the fact that I can plan all I want but things happen. I planned my outfit, my hair, my make-up (which I ‘never’ wear), I was going to look so good! When I showered that evening, seated on my shower chair, I shifted my weight and my foot slipped… Straight into the wall! Seriously? I broke my big toe… So, instead of the cute booties I planned to wear, I was sporting my lovely walking boot from my countless broken bones. I certainly got my moneys worth from that thing!
  • Remember to eat and drink plenty of water. I know, most people don’t need to remember to eat but meds I take decrease my appetite to the point I need reminders.
  • Breathe…

We arrived in plenty of time to scope the venue out in person. I decided to take the elevator because of my broken toe, why complicate things or make them harder? With drinks in hand, we got to our seats, they were better than I thought! As the lights began to dim for her show, I felt all my anxiety melt away and was replaced with excitement. I was really doing this, I was really here! I ‘sang’ along with every song and still knew every word. I screamed, yelled, whistled until I was hoarse! I ‘chair’ danced (no standing) the entire time, to the point I was sore the day after. We had FUN though, so much fun! I’ve given too much ‘power’ to my Vestibular Disorder. It’s time to baby step my way back into this thing called life.

I felt like giving myself a pat on the back after accomplishing this and I think even Mike was impressed. Vestibular Disorders definitely make life more challenging, less spontaneous, and less autonomous. I am truly tired of feeling this way and have recently begun grabbing these rare occasions when I feel ‘okay’ and going for it. I’ve been going with Mike on various shopping trips, which really push me past my comfort zone but that’s a good thing for us Dizzies. I even went to the movies with our daughter, now that was extremely challenging but so enjoyable!

Last week was also VEDA’s annual Balance Awareness Week which was recognized this year by our Government here in the USA. So, besides flooding my Social Media with facts about Vestibular Disorders provided by the Vestibular Association/VEDA, I worked on my own balance awareness.

Yes, I did!

 

http://www.vestibular.org

How Do Dizzy Moms Survive Raising A Child?

I don’t know how many of you are dealing with a Vestibular Disorder and a baby but somehow, I am back in that mix. Americans have created a new ‘norm’, grandparents raising/keeping their grandchildren. Some grandparents do it because their choice is, raise the child or loose them to the ‘system’. Mine was a choice, sort of… Mike swears it was my choice but that’s not quite how I remember it…not unusual in our marriage. I found myself, back in time somewhere recently. A time before I found my voice, when I didn’t or couldn’t say, “NO”!  Mike and I were on our last day of a long over due vacation this past Summer. Our daughter Sarah, called us in a panic! There had been a ‘snaphue’ with her childcare located at her work place. If she’s in a panic, then I become panicked, not the best mom trait I realize. It is just part of my PTSD and if I’m honest, I am a ‘problem fixer’. While in this (out-of-body) state, I apparently agreed to keeping our new granddaughter until the ‘slot’ opens! Brain fog, I tell you! What did I get myself into???

In reality, Mike is doing more than me, I could NOT do it alone. I am sure there’s a dizzy mom (or two!) reading my blog and they understand what I am saying. How do YOU do it? I give you mothers’, doing the immense job of raising a child while dealing/living with a Vestibular Disorder, a standing ovation! Here’s an example of our new typical week We get up at 6:15 am to be ‘ready’ for Olivia (put on a robe?) at 6:30 am.  It’s a mad rush for us just to get to go to the bathroom and make coffee (must have coffee!) before she comes. Sometimes, it’s an ‘either’, ‘or’ situation. Occasionally, we actually pull it off. Sarah is very prompt and after a quick hand off, Olivia is ours for the next 10 hours, yes, TEN hours! Mike continues working nights and I continue waiting up for him. We are now getting 4-6 hours of sleep (just like a real mom) then, trade-off catching naps.  I have to get sleep or I will have a flare of Fibromyalgia (ME! ME! ME!). When does Mike get any sleep? Usually while holding Olivia… Some days, I am able to ‘let’ him sleep for more than a few hours (aren’t I generous?). It just depends… and that SUCKS!

Do I regret ‘making’ this decision? Not at all but doing this while dealing with a Vestibular Disorder totally changes the experience. When Olivia was an infant, I rarely had problems as it was all feedings, diaper changes, and gazing at her while she sleeps. I hold her in my lap ‘croaking’ out show tunes from ‘My Fair Lady’, all the usual childhood songs, 1,2,3’s, ABC’s, etc. She is a ‘normal’ baby, so this stage didn’t last long. She quickly learned to roll, twist, turn, pivot (all developing her Vestibular System!) and before we knew it, she was sitting, then quickly mastered crawling. Now, she’s trying to walk! In reality, Mike and I were able to see all her ‘firsts’ and watch her huge smile go from being just toothless gums to now having 5 (going on 6) teeth!

Among her favorite things, turning her head upside down, similar to the Downward Dog Yoga position and I can’t do that simple thing… she loves throwing herself backwards while sitting in our lap (better have a good hold!) and look at her world upside down. I can’t do so many simple, silly, and fun things that I could before I acquired a Vestibular Disorder. I know I’m not alone in this… I know also, I have accomplished some things I thought I couldn’t. Keeping a baby is one of those things and it’s a fantastic form of VRT, also. I’ve tried laying on my back, flat on the floor with her but it always made me dizzy. At least I was already on the floor, where was I going to fall, then? I modified this play activity by stacking pillows to raise my head to my optimal position and I could do it. I wasn’t laying actually flat though…

This time will soon end for us, when she begins daycare. Will I miss her beautiful face and her giggle, and her chubby legs and precious little fat feet and…? Of course! We will still see her every weekend. I envision myself being a ‘better’ Memaw because I won’t be the Zombie I/we have become.

 

 

vestibular.org/

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

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!

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