Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Wednesday, March 18, 2009

Updates, Updates Part 5

Two for one.

I don't often post two times in one day. Even, though I may often have more things to say, I try to keep the posts down to one a day. And, they have gotten shorter and more to the point (I hope!).

But, today, I had two things to say. One was announced in the post below this one. The other is to finally finish a series of posts regarding my family. This post makes Updates, Updates, Part 5. I finally have to talk about myself.

Sometimes, this is very easy. I feel I could talk about myself all day. Not sure you want to hear it, but some days I am so in touch with who and what I am, I could go on and on. Other days, I question my reasons for being, my motives, my ever changing and unenlightening emotions, etc. Basically, some days, I don't know who the heck I am or what the heck is going on.

But in Updates, Updates, I usually focus on the reason each member is a part of this Unique Family. When it comes to me, I am a member, because, well, I was the one who heard the phrase in my head, that fateful morning, when I didn't think I could go on anymore. I heard "You have a Unique Family." And, it was I who had to place myself in the Unique Family first and then bring the rest.

Without sounding too psychological, I had to see myself as part of something unique and wonderful, even when, on the surface, it didn't look that way.

I certainly didn't feel like I wanted to be included. Certainly didn't feel like I would write about it, either. And yet, both of those things happened. So, I will try to write about myself and what I face every day. I have struggled with some limitations from early on and others surfaced as I got older.

For all I can find out, I was born visually and partially hearing impaired.

I didn't find out until I was 37 that I have degenerative myopia. That is a fancy way of saying my vision never stops changing. I usually have to change my glasses every year or so. It is at the point now that I have to use assistive technology to get things done - CCTV, large 22” monitor on my computer, large text and icons, text readers and speech to text synthesizers, etc. There are other items I would like to purchase, like an Optelec Farview. This would help me outside of the house. I still have a driver's license, but I don't drive much, and never on the highway. My life and the lives of others are too precious to me.

I have also learned that my hearing loss is not just about being partially deaf. I have permanent nerve damage in my inner ear, which has caused vertigo to be a permanent part of my life. I had a few episodes of it as a child, but after 2006, it decided to show up every day. There is therapy, and I may try it, but for now, three different meds keep the world from shimmying, and the nausea and migraines at bay.

I have mobility impairments (herniated discs - 5 in all) as well, but most days this is hardly noticeable. After being practically bed-bound for a year, I had back surgery in 2005, that returned me to the land of the walking, but, no hikes, long walks or drives for me. I can drive 20 minutes one way, but the return trip, I will pay for it. Anything longer, someone else is doing it, and even then, I will stiffly get out of the car.

I have an allergy to dust mites that I didn't know about until last year. Due to this allergy being untreated all of my life; I also suffer with multiple chemical sensitivities and a weakened immune system. I am getting stronger (I made it through this whole winter without one cold, flu-like episode or bout of sinusitis! Not even a runny nose!), but I still can have violent reactions to fragrances, everyday cleaning supplies and chemicals, and dust that can halt my activities in a second. I don't need an epipen, but I will always have Benadryl, Zyrtec or Allergan handy.

I continue to battle diabetes through diet (vegetarian/vegan) and herbal supplements, but have had to start taking meds for hypertension.

Since I have been treating my allergy and the inner ear problem, I have not suffered much with bruxism, TMJ or trigeminal neuralgia (TN).

I have survived and overcome Bell’s Palsy, RSD/CRPS, optic neuritis, and a 40% disability in my lower left leg (due to a fractured tibia that went undiagnosed for 3 weeks). I have had seizures, multiple faints and chronic fatigue syndrome-like symptoms since my late 20s.

To look at me, you wouldn’t be able to tell all of that. In fact, if I go back to wearing contact lenses, you won’t even be able to tell I have a vision issue. I am truly a person with invisible disabilities.

If you read the post on "Learning to Be Less Than Perfect," you know that during my childhood, most of this went untreated. As an adult, I didn't really acknowledge my weak state of health even as I was staring disability in the face. I continued to work and ignore my health needs, trying to be stoic like my parents. Even after receiving disability, I continued to try to work; at home and in temp jobs. I only stopped in 2006, after the bout with Bell's Palsy left me shaken, broken and scared. I had to pay attention or no one knew what would happen next.

I thank God, today, for that life-altering experience. I would not be writing today, starting an online business, making the friends I have, if I had not faced one of the most difficult periods of my life.

Here I go again, making a really long post. Sorry.

So, now you know a little about the final member of the Unique Family. The one God chose to bring these stories to you. Perhaps this is one of my purposes in life. I hope it makes a difference in yours.

P.S. While looking for a pic for this post, I came across this quote from The Jungle of Life:

It is not the mountain we conquer but ourselves. - Edmund Hillary