Watching From the Outside

As everyone knows by now, I have Systemic Lupus and Autonomic Dysfunction.  This has been my life for over ten years.  It has been like living on a seesaw that never ends, and my parents have had to watch, from the outside, every painstaking moment of pain, confusion, frustration, depression,  anger and finally acceptance of my illness. 

I am now on the other side of this, along with dealing with my own illness.  I am watching my mother struggle with, not only Systemic Lupus and Sjogren's Disease, but also NMO (or more commonly known as Devic's Disease).  This disease falls under the umbrella of both transverse myelitis and, until recently, was misdiagnosed as Multiple Sclerosis because of the lesions that form on the brain and spinal chord.  Like my Mom, many people with NMO also have other autoimmune diseases. 

My Mom was "lucky", in that she was treated early, and did not suffer the paralysis or eye involvement that impacts so many with this devastating disease.  She does, however suffer from pain sensations and numbness...she must take medications that she NEVER took for her lupus or Sjogren's. 

Watching from the outside is much more difficult then I ever thought possible.  I had hoped that I would be of more help...that I COULD be of more help, having been through my own illness.  I would never wish these illnesses on anyone, but this process of grieving the life once had is one she must go through.  As much as I understand that, I want to make it better for her.  I want to show her that through it all, that despite medications and possible relapses, we have survived and are moving ahead, even if is slowly. 

The link I posted below is for a fundraising effort for NMO, which is a rare autoimmune disease that attacks the spinal chord, optic nerve, and sometimes, brain.  It causes lesions that inflame leading to paralysis, pain, difficulty with organ function at all different levels (depending on where the lesion sits on the spinal column), and fatigue.  The medications to treat NMO when in a flare are HIGH dose prednisone and different immune-suppressants or plasmapharesis. 

Please take a moment to look at this wonderful site below to help out a worthy cause!  Rare diseases get so little attention...Let's bring awareness and education to NMO!  We need better treatments and a most definitely a cure!


Cure NMO Bracelets and Key Chains

or you can donate to the Guthy-Jackson Foundation

I Went For It...Moving Forward

After my last hospitalization, when I dropped down to 15 mg of prednisone and found that the two neoral were not working, I was raised up to, once again, 60 mg of prednisone to be brought down slowly as the neoral was raised to three pills a day.  I am currently on 35 mg of prednisone, waiting for a few more weeks until my blood concentration of neoral can be tested to make sure that I have enough in my system before lowering below 20 mg of prednisone.  I will not go through that kind of flare again for lack of knowledge. 

Since I have been "stable" on the higher doses of prednisone, and feeling pretty well on the three neoral a day, I decided it was time to move forward with my life.  I have been making phone calls and writing more emails to service dog facilities and trainers.  I cleaned out all my old files and shredded what seemed like an endless amount of paperwork that was cluttering our filing cabinets, since we hope to move one day...hopefully sooner then later.

And then I did what I said I didn't want to do...I signed up for match.com.  I finally realized that if I wanted to really move forward with my life, that I had to get up off my bum and take that final step.  I had my Dad take me driving yesterday, since it had been over two years since I have driven.  It  has also been over two years since I have dated.  It is time.  It is time to put myself out there.  No guy on a white horse is going to rush up to my door to come and rescue me from my life.  I have to put myself out there.  I have to do this for me. 

I am 33 years old and way too young to be cooped up in the house pining away for a date when I feel good on the weekends.  I am too young to wonder "what if"?  Now, when I feel well enough to do this, is the time.  It is my time to move forward. 

If things fall backwards...well, that's why this blog is called the seesaw, but at least I will have tried!  I am tired of regrets!  NO MORE!  I am forging ahead as steadily as I can.  Wish me luck...I think  I may need it on this one!