I have been anticipating the loss of medical insurance for some time because my husband is just about out of the "system" created for Disabled Adults. We will officially be "middle class" as of the end of the tax season.
This excites me and terrifies me at the same time. You see, I have always been "disabled" in some way because of this lovely thing they call Narcolepsy. I have always had some form of government insurance.
Generally speaking, this means I have always also had the label of being a dead beat because most people don't understand the difference between being "welfare" and being "disabled." I have to say I love my doctors and I have gone through many to find them. It makes me sad that there has been so many others who have just destroyed my faith in the medical system. I'm happy to say I have finally (after a terrible 20 year journey) found a medication combination that has enabled me to lead a decently productive "normal" life.
In high school and college I was not so lucky though. I had been given high doses of stimulants & anti-depressants, along with behavioral modifying drugs such as Depakote, Dexedrine/Dextroamphetamine
Imipramine/Tofranil, Methylphenidate/Ritalin, Provigil/Modafinil, Wellbutrin, etc. This doesn't even include the other problems that I was being treated for, such as chronic pain, fibromilgia, reoccurent dislocation of the major joints, bi-polar depression, and chronic fatigue syndrome. I was on pain killers, muscle relaxers, stimulants, and anti-depressants all at the same times.
When I left home for college (an idiotic attempt to get out of the system by getting a "education") I didn't get the insurance anymore because of red tape. I had to stop all of my medications cold-turkey, which was hell to say the least. I grew a lot while at college and was able to get the gastric bypass surgery and lose a great deal of weight! I hadn't felt so good in a long time! However, the absence of weight didn't change the sleeping disorder. I was having all the same issues as before only now I was not as big!
Upon returning home from college early, I was unable to secure a job due to motherhood. After a long period of time trying to make it on my own with a developmentally delayed child, I gave in and went to the doctors to see what new treatments they offered. I was happy to find that one of the medications I had been told about was now fully marketed and that I would be able to try it!
This was called Xyrem, or Sodium Oxybate. My life would never be the same! I had never slept before and my body had no clue. The change was dramatic! I was also prescribed Armodafinil/Nuvigil for energy and Duloxetine/Cymbalta to help calm the crazy anxiety that had developed from years of not sleeping. The combination was a miracle for me. I honestly wasn't sure what do with myself! I was able to obtain my drivers license, enroll my kids in community activities like swim & gym as well as fitness classes for myself like yoga and what not. I got my weight down to 157, but then started to gain back over the holidays.
In January Social Security informed me that they needed an update and sure enough, I didn't get the medical back. Thus leaves me where I am today. I am struggling to figure out how to handle my small children who are used to being fairly active. Sleeping has become pretty impossible and I honestly have a hard time even remembering how I lived before. Sleep is impossible because of all the hallucinations and night terrors. I am only 3 nights with no sleep meds and I am hearing sounds at night again. Weird dreams are not so bad, but violent terrifying ones are unbearable because my brain can't tell if it's real or not! According to my mind, I'm just dreaming, but my brain thinks I'm awake. It's so bizzare and complicated that I just want to cry!
Honestly I have no idea how I'm going to make this work. No sleep, no energy kids fighting, being sick, being secluded to my home with no car, and not having the anxiety meds to keep me level.... I am scared!
How do you do this? How is this fair? I never knew before how it felt to sleep, so now that I have experienced real sleep and real energy, I am terrified at how desperate I'm going to feel for sleep. Where will all this take me, and why would God let me have to go through this?!
I have no real answers but I am not bitter. I am just scared. I wish the US government would realize that what we need is a program for disability medical coverage which cannot be affected by income. One which allows for a person to receive no tax breaks, no free money, no food stamps, no free childcare etc, but health care. I don't want anything but the ability to get my meds! It's just not fair. Tomorrows Topic... Outrageous Pharmaceutical Company Prices
No comments:
Post a Comment