https://visiblepersoninvisibleproblem.blogspot.com/2018/10/october-24th-2018-my-timeline-of.html

October 24th, 2018 My timeline of progress

I decided to do a timeline - an interesting cognitive exercise, as well as visual - Early Sept., 2011 - wake up to terrible VERTIGO ...

About Me

When I got sick in September of 2011, I wanted to know what was wrong with me.   Getting sick was not a gradual process for me.  I went to bed, and woke up in the middle of the night to a spinning world.  If I didn't move AT ALL I was fine.  I was very sick, and this is what my husband Ron and daughters Leena and Cara woke up to, when I got up in the morning.  I managed to communicate that I was sick, and went back to bed.

10 months later, in July of 2012, when I finally got my diagnosis of Migraine Associated Vertigo (MAV), there was still so much I wanted to know.  I needed to know what I could do to manage my condition so I would feel better.  I wanted some idea of what my life would be like moving forward. In the spring of 2013, I saw Dr. Neil Margolis (Developmental Optometrist), and got my vision disorder diagnosis of Convergence Insufficiency (CI) with Exophoria, an undiagnosed childhood problemwhich was dramatically affected by my vertigo.  I also now have an impaired vestibulo ocular reflex (VOR).

In the spring of 2012, shortly before my MAV diagnosis, I began (and continue) Feldenkrais Therapy (FT) for the balance problems caused by vertigo.   In May of 2013, when my CI with impaired VOR was diagnosed, I began Vision Therapy (VT).    I'm constantly learning how to cope with my disorders, as well as working hard to make progress.  I started working with a psychiatrist, Dr. Mirsky, in Nov. of 2017, and doing cognitive behavioral therapy (CBT) in March of 2018.

During the first 2 years of my illness, I used a voice recognition program called Dragon Naturally Speaking to dictate to my computer.  This allowed me to compose e-mails, and do a small amount of writing, mainly about music.  After a year of slowly improving through VT, I was able to use my keyboard again, and to write in more depth about my experiences.  I've always loved to write; I've done it off and on since I was a teenager. 

When I began posting my writing on Facebook, I was invited to become an Ambassador Board Member for the Vestibular Disorder Association, VEDA.  VEDA, an organization I discovered after my MAV diagnosis, works to educate the public and raise awareness about vestibular disorders (MAV is considered a vestibular disorder).  


My introduction would not be complete without some info about my family, since they are all an important part of my support system, and my life.  I live with my husband Ron, our two college age daughters Leena and Cara, and our pets Maisy (cat), Cosmo (dog) and Molly (cat).  Before Maisy & Mollly, we had a wonderful cat named Goldy for 14 years.  
Cara and Leena were both a huge help in getting this blog up and running.

Here's a link to my YouTube channel - https://www.youtube.com/user/cool09VIDeos1  

I developed nerve problems in my hands, which I discuss in "When my challenges really began...", written May 5th, 2015 - see link below:
If you are interested in reading more about my FT - please see http://visiblepersoninvisibleproblem.blogspot.com/2016/02/february-28th-2016-about-my-feldenkrais.html
I invite you to read other posts as well :-)
Thanks!

For more info about vestibular disorders, please go to www.vestibular.org 
and for more info on functional vision disorders, please go to the College of Vision Development site -  www.COVD.org.   
Me with my wonderful Vision Therapist, Ann...


5 Responses to About Me

  1. Thank you for your letter in the Vestibular Disorder website!

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  2. I stumbled on your blog through VEDA. Thank you for ssharing your experiences!

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  3. Sorry I just saw this... you're very welcome - glad you found me :-)

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  4. I am a wife, and stay at home mom of four children when my husband became ill....he was the sole provider as the children were young, and two with learning disabilities, that as a certified elementary teacher, we made the choice for me to be a full time mom, as he also traveled a lot for work. Like you, some friends and family stepped up, initially, but only for a short period and minimally. We, a family of 6 were very alone in our struggles, but did have an excellent medical team, Neurologist, ENT, Neuropsychologist, OT and they were our our lifeline, our true support. When his company terminated his employment, then terminated our two policies for life and disability insurance we went from being proud, independent, contributes to being worried how we would be able to purchase food and pay our mortgage, for our small conservative house, maintain our old cars, and attempt to prevent our kids from feeling more losses, as they "lost" the health and activities involving their dad that they enjoyed, such as playing catch with a football, shooting baskets bike riding, etc...his migraine and fatigue was robbing him, and them of "life" as we knew it. Having young children, it was heavy for me to compensate in attempting to keep everything as "normal" as possible, for all the transportation needs, school meeting - communication ( 2 with Special Education IEP's), and then the pre-teen, teen years, with little support and a whole lot of false judgement predicated upon ignorance....it was the year 2010....The family needed love and understanding, and help with house maintenence issues, but with his parents deceased, and mine, retired, three homes but invisible, ( the doctor drove me to the hospital to deliver my 4th baby because my "Mom" stated upon my pregnancy news - due date info. that "I'll (she'll) be in Florida at that time"....which speaks volumes of any support thereafter when my husband became ill. Few seemed to really listen...the kids were unable to do/afford the many activities they once did financially or transportation - wise, and maintaining their social lives, the finances, the cooking, cleaning, etc. transporting my husband to his treatments, etc. was exhausting....I tried per diem working a bit, in education,but it was like working two full time jobs with no help, and worse, no understanding/validation, but smiling every day so to ease others' stress....very exhausting. I think your husband and I need to start a caregiver - spouces' blog...as we share little so not to make our spouces feel guilty...to add insult to injury, many whom you do take the time to devulge details to do not actively listen, which displays in their behaviors/actions, requests, etc...and deepens the frustration, and loneliness all the family feels at times. Public Schools need to stop mandating expensive monetary requests and/or time consuming obligations as do the many other childrens' programs that put great
    stress on families with attached contingencies in the name of "volunteering", or "donations"....so many people with soo many requests and families with adversity, whom choose to keep their health information private, are then looked upon negatively because they cannot maintain the expectations of others, more abled, to do so....as the ignorant world falsley judges....It may have been 7 years ago, but seems like yesterday in many ways, as the fall out of such adversity, does not seem to ever go away...we learn to live with it...with a "new yardstick", but a hard pill to swallow for kids...

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