Author: mdma74

I've lived a life of chronic dizziness since 2002. I was an employed, successful, respected C.O.T.A. with a 12 year career as a Pediatric Specialist. I loved my work, I actually looked forward to it each day. I was exposed to a virus while working and by the end of that day, I was running fever. I was treated by my GP first (a virus...duh!) I at least got anti-nausea medicine, then a referral to an ENT. Sound familiar? One and one half YEARS later, I was finally diagnosed. Labrynitits/Vestibular Neuritis which left a lesion or scar on my 8th Cranial Nerve. That's our 'balance nerve', how lucky was that? So, after a long bout Depression, I decided the 'telling' of my dizzy journey would be a good thing. It's very tongue-in-cheek for the most part. While I do go into some very dark times while talking about the cause of my PTSD. I write this blog, for the most part, hoping to help anyone living/dealing with Vestibular Disorders (you would be surprised how many different ones there are!). I am an Ambassador for VeDA (NOT a typo), the Vestibular Disorders Association, a Grassroots group that has the most extensive resources out there in cyberspace. Google, Siri, any of them... All roads (links) lead to VeDA! 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/

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The Weather and Dizziness…

As if having a Chronic Vestibular Disorder isn’t enough for a person to deal with, add in weather changes, I get worse. Why is that? I’ve noticed (in our Facebook Support Groups feed all the time), there are many people also affected by weather changes. I think the weather connection is considered with Meniere’s but not necessarily for someone with a lesion on the Vestibular Nerve. Is it the high or low pressure systems working their way through that increases my dizziness? Is it the allergens that come blowing into West Texas from who knows where? Maybe it’s plugged up Eustachian Tubes putting pressure on the nerve? I take allergy pills (to make myself believe that something will actually work) with ‘hit or miss’ results. Today is one of those days. It’s cloudy, cold, and rainy outside. Yesterday? It was a beautiful, bright, sunny day. It’s been this way for a number of weeks and I’m over it but doubt it’s through with me. It’s also the beginning of holiday season, sigh…

Oddly enough, or maybe not so odd, the weather also affects my Fibromyalgia symptoms. Why? Is there research to back this up? I doubt it.  I do know my body and certainly know when I’m in pain. So it’s been weeks of dizziness and pain and allergies and… I’m glued to my heating pad, slowly baking my skin into jerky. I’m walking around with my arms ready to catch me before I fall and haven’t left my home in many weeks, many. Have I become an Agoraphobic? I might be but I don’t need or want yet one more diagnosis. Mike does (rarely) force me to get out. We fight awhile and I either do or don’t go. He’d say, “I have to use a cattle prod to get her out”! It is the sad look in Mike’s eyes that makes me go…

I wish there was a magic pill (don’t we all?  I take too many meds now anyway…) to just stop the dizziness but there’s not. So what are some of the things I do when the weather isn’t cooperating?

  • I ‘try’ to stay current with weather patterns but the Meteorologists in my area are ridiculously inaccurate. They say it’s raining and the sun is out! Seriously. If I know a system is blowing through, I take a decongestants. Some can’t take these medications though.
  • I recently bought a humidifier, the kind you can add essential oils to. I use Lavender a lot! I use Eucalyptus to clear up breathing passages.
  • I sit in a hot shower. I’ve drained our 50 gallon hot water heater before attempting to feel ‘normal’. What is normal anyway?
  • I drink extra water. I know I don’t drink enough on a regular basis and it helps with sinus drainage. I find when my sinuses are pressured, my ear ‘stops up’ and my symptoms increase.
  • I try to get extra sleep. I’m lucky I don’t get dizzy when laying down, I know many of you do. So for me, if I’m sleeping, I’m not up and dizzy… Is this what’s called, ‘being in a hamster wheel’?

We recently ‘celebrated’ our Thanksgiving holiday and it was very (VERY!) laid back compared to years past. The cold, or whatever we had, made the rounds to everyone but Olivia, our 6-month-old granddaughter. It’s really quite amazing to watch a healthy immune system in action. We’ve pinned it down to the grandsons who began it. What kind of grandma blames the children? Me, I guess. They both shook it off very quickly but didn’t cover their mouths enough…or wash their hands enough…I didn’t sanitize after them well enough…I also noted,  as the cold passed through my family, the adults have all had a worse time. There’s been no fevers in anyone, that’s why I say it’s a cold and not the flu. Something else I noted, the adults in this family are the whiners! Especially me!

There really isn’t anything that I know of that will eliminate dizziness that worsens when weather systems come through. I do know, I am not the only one dealing with this same issue. If you’ve discovered that ‘magic pill’, let me know what it is…please!

*Update: I take a ridiculous amount of time writing these blog post and since beginning it and stating my fear of falling… I fell. I forgot just how bad it hurts and oh my, the bruising on my hip, elbow, and wrist! I was ‘simply’ vacumning and ‘simply’ bent down to pick up a Lego piece. I obviously bent past my point of no return! The worst part, knowing I was wiping out and actually going to the floor. I’m just thankful my hip didn’t break as I have Osteoporosis also. Sigh…

    vestibular.org

Having To Say Goodbye…

There are times I despise my Vestibular Disorder… The past number of weeks have been extremely difficult. They have been weeks filled with retrospect, sadness, peppered with laughter. There were two deaths of loved ones, only one week apart, not truly giving us time to grieve one before the other happened. The first, was Mike’s uncle, passing away at 92 years old. We traveled the 4 hours to attend his funeral and say goodbye to the end of an era. This was a man who had LIVED life to its fullest most of his years. He was an amazing story-teller, actually all the Byrne men are great tellers’ of tales, mostly stories involving oil rigs, drilling and ‘sweet crude oil’, and such. I do live in Texas and this is oil and cattle country out here (we just wish we owned some of it!). He had a beautiful service, but when it was time to go to the burial site, I just could not do it! I was so unstable feeling after dealing with the super high ceiling and lighting…It felt awful having to tell Mike I really needed to go home and as usual, he said “Yes” to me and “Goodbye” to his relatives. I have a selfless husband who does understand.

I think most of us go through a ‘funk’ after a death and funeral, it’s part of the grieving process and normal. You’re spending time reminiscing about the person, looking through childhood pictures, laughing and crying at the same time, and Kleenex! I definitely went into a funky mood. It was Mike’s uncle but after 43 years of marriage, he was my uncle also. We just sheltered in place for the following week, with Mike leaving only for work. We’ve lost most of our local friends due to Mike’s crazy schedule. No one we know has such a backwards schedule. Then there’s me and my Vestibular issues… It takes a funeral or a doctor appointment to get me out of the house! It’s frustrating, it’s sad, it’s infuriating, and there are times I truly despise my Vestibular Disorder!

During this oh so funky period, Reed, a long time friend of ours called. I didn’t answer at first, then thought talking with him would likely make me feel better, as he’s also a great story-teller! I decided to video chat with him. We talked about what was going on in their lives, he had a lot going on! A new job, in a new city, in a new home. His daughter and her family live in Rockport, Texas. Yes, that Rockport! The direct hit of Hurricane Harvey. They lost everything, yet still had it all because her family got out… I told him about Mike’s uncle and he casually said, “So, I guess you heard about Lin…”. At our age, I knew what that meant, he had died. I sat there in total disbelief, in shock, feeling numb. It was a video chat, Reed could see quite clearly, that NO! I did not know that he died.

When Mike and I  married 43 years ago, Lin was Mike’s Best Man, with Reed being an Usher at our wedding. We grew up with these people! We did all the craziness of the ’70’s and we all survived! Most of our lives, we remained close with Lin and his wife. We had game nights, homemade snacks, and I’m sure way too many libations. Then for whatever reasons (maybe my stupid Vestibular Disorder for one?) we slowly drifted apart. It’s only in hindsight that we see our down falls and I regret not putting more effort into seeing each other. Lin dealt with Kidney Disease for decades and had been on dialysis for 21 years (10 years is the ‘normal’ life expectancy once put on dialysis). He also had coronary Disease, so it’s not as if we didn’t know he was ill, we just didn’t know how fragile he’d become. Now, I was going to have to tell Mike when he got home…

A Memorial was planned for the next day. I cried myself to sleep after Mike and I talked for hours into the night. I had a panic attack after thinking about ‘What if you die, Mike? ‘What if I die?’ and other depressing dialogue. Mike is a powerful force in my life, he held me, calmly reassuring me it would all be okay.  When we woke up several hours later (we’d stayed up way too late), I couldn’t breathe, at ALL! All my crying had plugged up my head, I felt the ‘fishbowl effect’. My ears were stopped up and ringing (new for me, I assume it was Tinnitus?). I took  decongestants and lay in bed awhile longer. As I got up from bed, bam! I became so dizzy and nauseated, it made me ill. “Oh my God, not now”! It was now… Right now! That’s the thing with a Vestibular Disorder or other Invisible Disorder/Disease, we can look okay, one minute you’re coping pretty darn well, then it knocks you flat. A Vestibular Disorder truly doesn’t give a shit what plans or responsibilities you have, even for a funeral. Mike went to the Memorial Service alone.  I stayed home. I felt just horrible, both physically and emotionally. These are the times I despise being sick…

I’m feeling very mortal after losing Lin at only 63 years of age. A good reason? In my mind, it’s just too young to die (because that’s too close to MY age?) One thing I do know, I have no idea when I’ll die, none of us do. With all this sadness and stress, there is something that eases our pain, Olivia, our granddaughter. There’s something about the innocence of a baby that keeps us going. She is wearing me out this is true but it’s been 38 years since I had my last baby and almost 9 years since our youngest grandson. I’m able to do less with each one. I’m not the same person I once was, which makes me sad. I’m working on ‘staying in the moment’ which isn’t difficult with Olivia. She’s a ‘granddad’s girl’, no doubt. I’ve begun meditation again. I find it very ‘centering’ and does aid in my stress reduction, I don’t know why I forget about this very useful tool.

I believe there is an ebb and flow with life and death. I believe in the circle of life. I believe that Yin cannot exist without Yang. As one heartbeat fades, a new heart is strongly beating in a child just entering our crazy world…

 

 

 

 

vestibular.org

Can a Woman Have Too Many Shoes? Orthopedic Shoes That Is…

As a person living with a Chronic Vestibular Disorder, my world feels ‘off kilter’, ‘off balance’, or ‘spinning’… Daily. Every single day. So, what I chose to wear on my feet is a necessity for aiding my balance. “Balance is achieved and maintained by a complex set of sensorimotor control systems that include sensory input from vision (sight), proprioception (touch), and the vestibular system (motion, equilibrium, spatial orientation); integration of that sensory input; and motor output to the eye and body muscles”, as defined by the Vestibular Disorders Association/VEDA. The last thing I should do is wear shoes for only the sake of being fashionable. Wearing shoes that are just SO cute but offering no support, only make maneuvering through my world more difficult and hurt my feet. I feel I’ve come full circle with my attitude concerning Orthopedic shoes. Is it because I am 62 years old with broken old down feet or because I am dizzy and don’t want to fall anymore? A little bit of both, I think.

In 1973, literally months before meeting  Mike, I was prescribed my first pair of ‘Corrective’ shoes as they were called back then. At the age of seventeen! Corrective shoes were for babies or children, not 17 year olds! This was after the heel cups, shoe inserts and whatnot failed. After I’d broken my left 3rd, 4th, and 5th Metatarsal bones (the long bones in the foot) three times in two years. My dad told me, ‘if it happened again I’d have to get the Corrective shoes’. Of course, I broke my foot again! The attempts to hide my limping gait from my dad failed, when I was caught  limping down our hallway (it’s hard to walk on a broken foot!). I was going to have to get a pair of Corrective shoes. I never said I would wear them…

The only shoe store that carried these type shoes was a children’s shoe store, in the mall! I was so vain at seventeen, I thought ‘everyone’ would see me. See me sitting in a children’s shoe store, all 5′ 10″ of me. Oh, the pettiness of youth! On the drive to the store, I repeated over and over, ‘there was no way I’d ever wear them, that he was wasting his money, that I wouldn’t go into the store’, etc… I was very dramatic, producing big ‘crocodile’ tears (fake ones)  but nothing worked. He marched me in there by my arm and sat me down in a chair. A chair sized for a child!  I was livid! He calmly handed my prescription to the salesman. I hung my head as real tears began rolling down my face as my feet were measured. I wore an 8 1/2 AAAA shoe back then, a long and very skinny foot…

The salesman disappeared behind a curtain and came back with two boxes. Two huge boxes! I was horrified when he opened the box and ‘presented’ the shoes to me! They were very similar in style to what I pictured my grandmother wearing. I was a Hippie Chick and besides, they didn’t go with my hip huggers jeans and halter top… I was heartbroken when I realized the boxes contained the same style, just different sizes. The first size was obviously too small as my toes hit the end of the shoe. The second size swallowed my foot. He patiently showed me how I could ‘tighten the laces to make them fit’. Seriously? My feet were swimming in these dang shoes! Maybe if I over-lapped them, then tightened them, and wore the bulkier socks I had they’d fit! Dad paid for the (ugly) shoes and we left, my head still hanging low. I wore them exactly twice… I wore them to Church because there, I wouldn’t be ‘judged’ but bullies go to Church also… Sigh…

Fast forward to 2017… I just purchased my first pair of orthopedic shoes! Say what? This time though, the choice was mine and boy did I hit pay dirt! There are SO many Orthopedic brands that combine fashion and function now, it makes my head spin! These type shoes are expensive, but now, I look at it as an investment. In myself. Truthfully, my feet are a mess. Both are paying the price for being born with ‘joint laxity’, ‘ligimental laxity’, or  ‘double jointed’. I’d never heard this term until I became a C.O.T.A. and worked with children diagnosed with this. A doctor told me, ‘think of an elastic waistband that becomes old and stretched out, it no longer does what it was made to do’. That’s me. Many people have joint laxity but it’s in out feet that most obviously show it. Are your feet flat? Some are born with flat feet, this is different but they still need good support. My feet have become flat because all the tiny ligaments have stretched out and no longer doing what they’re supposed to. Do your feet roll inward? This is called Pronation. I have both, lucky me! One foot worse than the other, thanks to the breaks I had as a teenager and later in life.

Thanks to gravity, our feet and ankles take the bulk of its effect when we stand. We need a stable, sturdy, and supportive base that puts them in proper alignment. Proper alignment allows our feet and ankles to function as they should.  Wearing fashionable shoes were torturous for me but I did it, as most women do. My collection of shoes I’ll likely never wear again, like my 4 inch heels, are insane! I just can’t let them go, yet…Back to ‘sturdy’ shoes. Functional shoes! They have come a very long way and this time around, I’m on board! They even make SANDALS now that are designed with orthotics built-in! It’s been a trial and error (a lot of returns as I purchase online) but I think I have a good collection of Orthopedic shoes, boots, sandals, and inserts now. With insert orthotics, you can put them into most regular shoes to keep in fashion. Inserts have also come a long way. They even make them for, get this, HEELS! I haven’t tried these yet but definitely plan to. Why not? Oh, yeah. I could fall an extra 4 inches! My Dansko ‘Professionals’ are still among my favorites, talk about study support!

Some of my favorite brands of Orthopedic shoes, boots, sandals, and inserts are:

  • Dansko: Their ‘Professionals’ Line gives the firmest, most stable support. These are the clogs you see Doctors and Nurses wearing. I have about one dozen of them in every color you can imagine. Use their Outlet Store, you’ll save big bucks if you can live with a miniscule flaw.
  • Aetrex: My new favorite! Yes, you can wear a flip-flop ‘style’, if you don’t mind a 3rd strap that goes over the top of your foot. Most styles have a firm, yet soft and unbelievably comfortable footbed. Their line has metatarsal support (your mid-foot). I didn’t know how badly I needed this, until I tried these on! They also carry Lynco inserts, making most any shoe you already have more support.
  • Earthies: I love this brand, very comfortable. Their insoles aren’t supportive enough for me and that’s where the inserts come in. I think MOST people would find the support adequate and extremely comfortable.
  • Spenco’s: I have two pairs of their slippers and love them but I cannot wear their shoes or sandals as they are wide for my foot. They seem to fit like my very first pair of Corrective shoes…

These are just my opinions and have not been paid (I wish!) in ANY way. I’m the one who paid for my new, totally rocking, orthopedic shoes and sandals. No tears shed over wearing these!

 

 

Balance Awareness Week September 18-24, 2017 is brought to you by the Vestibular Disorders Association/VEDA

 

vestibular.org

I’ve Fallen Again But Not Like You Might Think…

This is a year  I will never forget  (I say that often, huh?) and I’ve been consumed by it! I know it must seem that I forgot about my Vestibular Disorder (I wish!) and my blog, I haven’t forgotten anything, I promise. I’ve just been so distracted by the fall I took on May 20, 2017 and I broke nothing! How can that be?

You see, on this date, our first granddaughter entered into this crazy world! I ‘fell’ in love so fast, it did make my head spin. I fell so hard, I sent out shock waves! Mike and I are ecstatic! This was never supposed to happen for our daughter, Sarah. She was told 15 years ago that having a baby was not in her future by her Doctor. See? Misdiagnosis happens to people in all kinds of situations.  I suppose God had other plans though! I feel He held onto this baby for her.

Sarah accepted her ‘infertility’ with grace and went on with her life. When she first became pregnant (but still not knowing), she went to her Doctor, just 2 weeks prior, for pain in her breasts (duh, usual first symptoms). ‘It was likely the change in birth control’, he told her. A few weeks later, we were awoken by a 9 a.m. phone call (a normal time of day for normal people but we don’t live a normal life. Mike works nights and we sleep in the day). Sarah blurted out, “Can we come over”? “Uh, yeah baby. We’re still sleeping, what’s up?”, I mumbled. “I have to come over mom. I need to talk to you!”, she had a franticness to her voice. So up we were!

When she came in, she was waving not one, not two but three pregnancy testing sticks! I immediately knew what they were but Mike was asking, “What ARE those things?”. She was illuminated with joy! I wasn’t going to question the ‘how’s’ of this wonderment. I knew where this tiny soul came from. She was truly Heaven Sent! Sarah was such a trooper through her pregnancy, I was in awe. I worried what the increasing weight might do to her pelvis, foot, and ankle but she only put on the weight of the baby! She did have to ‘go on bed rest’ the last month due to her blood pressure increasing, oh she hated being idle!

This precious angel was born via C-Section on May 20th. I am so very proud to introduce you all to my wonderful, beautiful distraction and heart of my hearts, Olivia Ann… As you can see from her photo above, she’s boycotting pictures! Mike and I are helping Sarah out for a short(?) while and keeping ‘Livvie’ (as Sarah nicknamed her). Olivia will be 4 months old next week and she is already ‘bored’ with my sedentary life but loves me singing ALL the songs from ‘My Fair Lady’! I know the songs to most Musicals of the 1950’s and on, much to Mike’s dismay! Mike does all the walking, walking, walking with her. He changes diapers, even poop ones! Who is this man? We are not the same grandparents we were for our grandsons, that became clear early on. This is a temporary(?) situation, Olivia will start daycare that is actually at Sarah’s work. It’s a bittersweet time for us. We’ve truly enjoyed this time with her but we ARE looking forward to getting back to our (ridiculous) schedule. I want to nap again!

Oh, Mike has reminded me (thanks so much!) that I actually did ‘hit a wall’ twice when lack of sleep caught up with me. Mike just calmly took the baby and told me to go to bed. I was out for almost 5 hours! I truly don’t think I could do this alone, actually I know it. I am very blessed though. Blessed in life, in love, and in laughing with grandchildren!

 

 

*Balance Awareness Week is September 18-24, 2017  Brought to you by the Vestibular      Disorders Association/VEDA   Website: vestibular.org

**More, lots more is coming very soon! Thanks guys.

 

Mending Broken Dreams

Let Go and Let God

As children bring their broken toys

With tears for us to mend,

I brought my broken dreams to God,

because He was my friend.

But then instead of leaving Him

In peace to work alone,

I hung around and tried to help,

With ways which were my own.

At last, I snatched them back and cried,

“How could you be so slow“?

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

“You never did let go”…

Unknown

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

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

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

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

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

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

 

 

vestibular.org

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!

Mental Health Awareness Month My PTSD Feels Like This…

Posttraumatic stress disorder (PTSD) is a psychiatric disorder that can occur in people who have experienced or witnessed a traumatic event such as a natural disaster, a serious accident, a terrorist act, war/combat, rape or other violent personal assault.

PTSD has been known by many names in the past, such as “shell shock” during the years of World War I and “combat fatigue” after World War II. But PTSD does not just happen to combat veterans. PTSD can occur in all people, in people of any ethnicity, nationality or culture, and any age. PTSD affects approximately 3.5 percent of U.S. adults, and an estimated one in 11 people will experience PTSD in their lifetime.

People with PTSD continue to have intense, disturbing thoughts and feelings related to their experience that last long after the traumatic event has ended. They may relive the event through flashbacks or nightmares; they may feel sadness, fear or anger; and they may feel detached or estranged from other people. People with PTSD may avoid situations or people that remind them of the traumatic event, and they may have strong negative reactions to something as ordinary as a loud noise or an accidental touch.

A diagnosis of PTSD requires exposure to an upsetting traumatic event. However, exposure could be indirect rather than first hand. For example, PTSD could occur in an individual who learns that a close family member or friend has died accidentally or violently.

http://www.psychyitry.org

Wow! How’s that for a definition? This was the ‘short’ definition, too. PTSD was the first diagnosis of any kind I received at the age of 32. No, I was never in a war, raped, or assaulted. I have been writing this particular blog post for over a month. It’s that difficult to remember but I feel it that important to educate, so this is my story (book!) of how I wound up with PTSD.

In 1977, while I was 6 months pregnant, we moved for Mike’s work to a tiny Texas town (1500 population compared to our hometown of 100,000!) for 10 years and I adapted. I met another young mother and our kids became best friends. Mike and I joined a church, desiring to give our children a ‘religious’ upbringing. I did sewing and alterations for the town’s two clothing stores and numerous ‘word of mouth’ referrals, enough that I’d just opened my own little shop. We began a Boy Scout Troop. Mike became the coach for Lewis’s baseball team. I volunteered at the kids’ school, twice making a full set of alphabet hand puppets that were so popular, teachers fought to get my help. I thought we belonged…

October 31, 1987 (the 30th ‘anniversary’ this Halloween) this tiny town decided there would be no door-to-door Trick or Treating, instead, holding parties for the children at individuals homes. What? Halloween without Trick or Treating, well it just didn’t seem right, but I reluctantly gave in and off they went. Mike and I were invited to a party my friend’s husband was there playing in a band. With our children at other parties, we had nothing to do, so…The location was way out in the country. “Uhhhggg!”, I moaned as we drove up. My gut began to cramp up. “Mike, I feel weird, let’s just go home”. Before I got his answer, someone asked him to play a round of ‘horseshoes’. “I’ll be right back”, he yelled over his shoulder. Great! WTF am I supposed to do? My friend was a no show at this point. I was so pissed, I can’t tell you!

So, I plopped down in a chair with my back facing a group of men deep in conversation. As I’m fuming over Mike, I couldn’t help but hear them. “Remember that time I  was so drunk, I rolled my truck and y’all pulled me out”? Laughter was pouring out over the memory… More stories of drunken escapades, as one begins to talk about his car, he didn’t like how he’d parked it…I tried tuning them out but heard keys being tossed behind me. My stomach was hurting, I had a bad ‘feeling’…All I knew was, I wanted out of this place, away from these drunks! How long does it take to play horseshoes? Finally! Here comes Mike, only to inform me, ‘okay, we’d leave as soon as he eats and drinks a beer’…”Do you want something”? “NO! I want to GO, MIKE”! He was already gone, I think he only heard ‘No’…

He was back almost immediately, grabbing a chair to sit by me. As soon as he sat down, headlights came on from a car at the bottom of a hill, shining right on us. There’s that feeling again, in my gut…Then, came the sound of a car engine revving…I turned around to see a cloud of dust and headlights…coming straight at us! My first thought was of the Steven King novel Christine (about a ‘possessed’ car)…My second thought was, ‘this is Halloween, someone thought this was a funny prank’. And would stop of course! Then, I had an ‘I can stop the car!’ thought. It took only seconds, but here was the car, with my hand on the hood of it, before it became ‘real’ (Fight or Flight Response kicks in) and I jumped into the dust, a tire running over my foot. I never yelled for Mike to jump and he never saw it coming. He was busy trying to make things right with me and eating. As the dust cleared, I saw the chair Mike was in and it was a mangled mess. “Mike”! “Mike, answer me damn it!”, I screamed. I was now in shock, literally.

The car continued out into a huge field, I could now see the tail lights through the dust. It comes to an abrupt stop. Total chaos! I continued screaming, but the others seemed bothered by my cries…”He was sitting right HERE”! “Where is he”? Suddenly, I heard Mike’s voice, but where was he? Then, I realize, he’s out there…with the car! As I ran towards the car, I followed a trench his body created as he was drug 75 yards under the car…and he was still under it, laying face down, a tire pushing against his head and he was choking on the food he’d just eaten. I got down on the ground, reaching for him and touched his arm. “What happened, Margaret”? “OMG, Mike! A car ran over you! It’s going to be okay (I didn’t believe this for a minute), hang on baby”! More screaming from me to get someone to call 911, to get out here and help…FINALLY! Here come some people, “Mike, people are coming, please hang on”.

Yes, people came out to the car. Not to help my husband crushed beneath this car, but to get the driver (who was so drunk, he had no memory of this later). Only after hiding the driver would they call 911. Seven men finally surrounded the car to lift it enough for me to pull him out from under it. Yes, I said I pulled a 250-pound man (2x my weight) from under a car, my only ‘help’ was the adrenaline that pulsed through me. Somehow, his head was not crushed, but his shoulders down to his pelvis were smoldering on his back and his clothes shredded into pieces. He could barely talk due to his broken ribs. How could anyone survive injuries of this magnitude? Once the Emergency crew arrived, I wanted to feel safe, but that feeling hung over me. Police, Sheriff’s Department, and the State Troopers were on site as I left. We’d been there 15 minutes, only 15 minutes…

Mike was taken to tiny town hospital where it was immediately decided to fly him via helicopter to a big town, a real hospital, a Level 1 Trauma Unit. His injuries life threatening as he was literally run over, there were 3rd burns in the form of tire treads and two large patches on his back. Every rib had multiple breaks, both collar bones were broken, collapsed lungs, his Heart, Spleen, Liver ‘bruised’, broken Pelvis, and both feet ‘crushed’. The most shocking injuries were to his eyes…they almost ‘popped’ out! Apparently not uncommon when massive pressure is put upon a body…He was in ICU for one week. Not one person called to see if Mike had even lived…Not my ‘friend’, not our Minister, and certainly not the driver. No charges against the driver. No justice at all. The town ostracized us. We will never know why…

It would be 1 1/2 years before Mike was completely healed. I’d done all his caregiving, all by myself for that 1 1/2 years, (burn debridement, the WORST!) likely on auto-pilot. Mike was finally back working. Life was almost ‘normal’…Then one morning I’d sent our kids off to school. I remember sitting down in a chair by the door and suddenly the kids were back home! “What did y’all forget?”, I yelled as they ran past me. “Get in here! Did you forget something”? “I don’t know what you mean mom. Our school is over…”, Lewis said. WTF? They’d just left! I looked at the clock, numerous clocks, and he was right. What had happened? Where did the time go? I was in the same chair, in the same position, not moving for over 7 hours!

This was how PTSD first manifested in me, loss of time…Then the nightmare ‘flashbacks’…My ‘startle response’ was/is over the top (ex. If I hear a car engine revving up, I literally drop to the ground ‘looking’ for safety, loud noises, headlights)…I became so fearful of cars, I didn’t drive for over two years…I became depressed…I had a hyper-vigilance anxiety over Mike or the kids going or doing anything and no, I sure wasn’t moving or going anywhere…I became an insomniac, not wanting to sleep because I might have nightmares…It was a vicious cycle I couldn’t continue living, I wasn’t living life, I was simply existing. I needed help, but finding the right doctor was every bit as difficult as finding an ENT to diagnose my Vestibular Disorder, about one year. I was in a variety of therapies but found ‘cognitive’ or ‘talk’ therapy to help me the most. In these 30 years since I’ve been in and out of therapy. I have no shame in knowing I needed or need help from a Psychiatrist or Psychologist.

Mike today, has various aches and pains still and scars from the burns but didn’t get PTSD. Nothing stops him! I would later learn, that ‘gut’ feeling I kept having? Intuition! I pay attention to it now. Halloween continues to be a trigger for me. The closer it gets to the 31st and the closer it gets to the time it happened, my anxiety still builds. If I see on the News that a truck has run into a crowd or an elderly person accidentally hits the wrong pedal and runs into a crowd, it brings it back. TV shows portray these type horrors all the time now.  These type things used to be a rarity, now it’s almost weekly. It just happened again in NYC! How can I ever escape my memories when it’s literally everywhere? Maybe I should stop watching the News…

 

 

You will not…

You! Yes, you!

You, my many disorders,

You will not

take any more of me

than you already have.

You will not

make me into anything

I do not choose to be.

You will not

make me any older

than the years I’ve

lived.

You will not

steal my energy

that gives me life.

You will not

keep me from

enjoying

and

celebrating

   new life entering

into this crazy world.

You will not

stop me from basking

in the light

of

this new life.

For you see,

YOU are not

the boss

of ME!

Those of us living with Vestibular Disorders, our world can change from day to day, hour to hour, sometimes minute to minute. We can wake up feeling fine, maybe good enough to make plans, so we do. “That sounds like fun, let’s do it”! Then as you’re getting ready, ‘it’ hits you. Maybe you turned around too fast, closed your eyes while washing your hair, or a simple hair flip (because you look that good!), or your trigger set off the spins. Sometimes, I know exactly what caused it, others I have no idea. Such simple, everyday tasks or movements that the day before (an hour before!) gave you no problems.

This is probably the part I hate the most…canceling the plans I just made. I cancel more plans than I am able to follow through with. My friend is then left thinking, “But, I just talked to you and you were fine”. After a while, I’m just not asked any longer. I don’t blame them and I no longer blame myself. I did that for a long time, then one day it hit me, why am I blaming myself for something I never wanted or asked for? I realized that my self-loathing behavior was only making everything worse for me. It certainly added nothing to my life, so I stopped. Oh, it was a process, of course. Once I learned to love myself in spite of all I deal with, my world changed for the better.

I try to find something to be grateful for every day, which is difficult on one of ‘those’ days. I am thankful for all my days because the fact is, you never know what that day may bring. It could be something great and I want to experience it, if possible. On a ‘good’ day, my gratitude will just flow like a river! A ‘bad’ day? It gets very basic, “I am grateful to be alive”…”P.S. I wish I wasn’t dizzy today”!

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