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.

 

We Are Due Change!

Oh, my! It has been a long time, a very long time since I felt this sense of accomplishment. I am one of many Vestibular patients that were misdiagnosed and in being told we have one diagnosis when it’s actually something else. So many of us are told the same thing, “It would seem you have Labyrinthitis. It will be over in one month…”. WE know better, we who have been forced to do our own research, and in doing so, we know there are at least 20+ Vestibular Disorders. Why don’t our doctors know this? There is such a lacking in how our doctors are educated. I’m talking worldwide people!

So, through my involvement with VEDA, I have met some amazing, inspiring, and knowledgeable people. I’ve met other awesome people through the Facebook Support Groups and my blog (all in virtual reality!), as we are from all over the world. This past week, I was asked to help write a petition to the World Health Organization (WHO). We worked for days, going back and forth, all over the world. I find this so wonderful, connecting with passionate, like-minded individuals who want, I mean demand, accurate diagnosis for Vestibular Disorders. I could easily go on and on about this, but I want to just share the link to the Change.org to read our petition. We did not write this just for us, we wrote it for YOU! You deserve an accurate diagnosis, we all do!

https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care

I hope each and every one of you, I mean you my wonderful, beautiful readers in the:

  • USA
  • United Kingdom
  • Canada
  • Australia
  • Ireland
  • Netherlands
  • Belgium
  • Greece
  • Italy
  • Brazil
  • Poland
  • Germany
  • India
  • Singapore
  • Argentina
  • France
  • Bangladesh
  • Croatia
  • Spain
  • Barbados
  • Malaysia
  • Romania
  • Oman
  • Mexico
  • Venezuela
  • South Africa
  • Philippines
  • Dominican Republic
  • New Zealand
  • Finland
  • Ecuador
  • Albania
  • Norway
  • Trinidad & Tobago
  • Peru
  • Denmark

Will you please read the petition and SIGN it today, then ask one friend, one family member, and so on to do the same. This could be HUGE!

vestibular.org

The Sneeze…

Don’t Mind Me, I’m Just Holding Up the Wall…

Well, hello world! This is my first blog that chronicles my life after diagnosis with Labyrinthitis in 2003. Most of you may be looking at that word, Labyrinthitis. It sounds so medical doesn’t it? It is, it was, and always will be. A medical term used to describe an inner ear condition that results in vertigo, balance issues, nausea, vomiting, fatigue, and much more. Those were my primary issues, and very common to the disorder.

Most people with Labyrinthitis wonder where on earth they ‘got’ it. For me, I know exactly when I was exposed to the virus. Just before Spring Break, I worked in the school system as a COTA (Certified Occupational Therapy Assistant), I sat cross-legged on the floor with my little ‘client’. The non-verbal child had multiple issues, but I was working on Sensory System issues. The sun shone brightly into the classroom, and I noticed the child’s face was scrunching up. I said (getting closer), “Now what’s this little face all about? What are you trying to tell me”? The next thing I knew, a huge sneeze came out! The spray went all over my face but worst of all, it went into my mouth! I reacted as anyone would. I did a quick ‘hand-off’ with a classroom aide, jumped up, ran to the sink and began washing my face and mouth with the antibacterial soap! Yes, I did! Washed my tongue with antibacterial soap! I swished it all over my mouth and did it do anything?

By the time I finished my work day, I was running a fever and felt horrible! I crawled into bed as soon as I got home and thought to myself, “It’s Spring Break. Surely I’ll be well in seven days”. That virus had other plans, though. About one week after ‘that’ sneeze, I was asleep, and I turned over in bed. Whoa! What was that feeling? Oh my gosh, my head was spinning and my eyes felt like they were ‘pulsing’ in a weird rhythmic way. I lay there until it stopped, then I sat on the side of my bed before going to the bathroom. Yes, I should have woke my husband then, maybe turned on a light, or maybe even asked for help, but I didn’t. Next thing I know, I’m on the floor, in the dark, with my husband snoring away. I had to call his name several times to awaken him. Poor thing woke up so confused, “Margaret, where are you”? “I’m on the floor, Mike”! And of course, he said, “What are you doing down there”? And of course, I said, “I’ve fallen and I can’t get up”! I kid you not! He helped me to a sitting position, and my head started the spinning…then nausea hit…followed by vomiting. I spent the rest of the night with my head in a trash can throwing up. Horrible. Just horrible. There was no way I could go to work the next day (even after a week holiday), I had to call in sick. I was in bed, just wallering around, going back and forth between laying still, to wallering. It was not a pretty sight, I’m sure!

As I headed into week two of this mess, I went to my regular Physician. Diagnosis: A viral infection. Simple enough, I’d just have to wait it out. Weeks turned into a month. I was trying to work, but having so many Vertigo episodes, I’d put my back against the wall, slide slowly down, and sit. The walls became my BFF! That’s when I came up with the saying, “Don’t mind me, I’m just holding the wall up”. After a few months, I finally got into a local ENT and had countless tests. I had the dreaded three ‘V’s’: virus-vertigo-vomiting! Again with the virus, okay it’s a virus, AND? He was able to say it was in my inner ear. My INNER EAR? You mean it went to my BRAIN? He was a Board Certified ENT, but very ‘old school’ in his treatment and willingness for referral onto a Neuro ENT in Dallas. So I floundered one whole year, being ‘treated’ with Scopolamine patches for nausea (I used these for two years before I had an allergic reaction to the glue, go figure!), Meclizine, Valtrex antiviral medication. The list became endless and side effects of the medicines awful.

I eventually (reluctantly) took a formal Leave of Absence, but not before breaking my tailbone three times, my ankles twice, my kneecap and Cuboid (on opposite legs, of course). It was dangerous to walk! Since I worked at a Pediatric Rehab Facility, my co-workers cast my legs, Orthotists who served our Facility made braces for me. I had access to all types of adaptive equipment, but I could stay ‘erect’ for limited amounts of time before vertigo attacked. I was no longer living life. I felt like a prisoner in my own life, and the thought of a virus still being inside my brain after all this time made me feel insane! I had a MELTDOWN with the ENT, “Get me into that *&#! Specialist in Dallas!”, while crying hysterically. I got the referral. This new doctor would become the ‘man who saved my life’ and the BEST Physician I know. My appointment date? December 16th, 2003, my birthday! Oh, what a birthday it would be…