I haven’t posted in a while because my anxiety and OCD have pretty much taken over my life. I’m exhausted beyond belief yet I just can’t stop. My pain is better controlled (better but by no means relief) by upping my Gabapentin and adding in Marinol. When I take those 2 together it usually makes me so loopy that I just stop caring. Weird thing is that some days I’m totally ok (well relatively) and others I spent 12 hours a day where I just keep going and going, literally till I collapse. I was so exhausted and fatigued the other day that I was walking down the steps and my legs literally gave out. Thank heaven that I landed square on my ass and didn’t take another nasty fall down the steps.
Until you have one of these “invisible” illnesses you just don’t get it. Be it Lyme, co infections, anxiety, OCD, depression, etc. Its so infuriating that people are so skeptical and can’t just cut you a break, or if they really cared to know-do a little research on the internet and find the proof themselves. If I had a choice and could just “snap out of it” I would. I wouldn’t be getting up in the middle of the night to make sure everything is locked up. I would not choose to have panic/anxiety attacks. I would not choose to see blood running down my walls, the floor moving, see Jesus watching my when I wake up, nor would I choose to be constantly paranoid about bugs and see them everywhere or have them crawling all over my body. Hallucinating is not fun, especially when you can’t tell what’s real or not anymore. I wouldn’t be spending nearly $60,000 on treatment to make me better if I believed (or evidence showed) there was another way.
I am a 30 yr old female. This disease is taking away everything I have worked so hard for. Unlike most of today’s youth, I paid for everything myself – until now. I started with a government job at 18 yrs old with excellent health insurance, a retirement plan, good pay. I bought my own car and my own home and everything it. Never afraid to recycle, repurpose or ashamed to take hand-me-downs, I was completely self sufficient. Now its a very different story.
That excellent health insurance is a joke. When I was misdiagnosed with MS and was prescribed a medication that cost the insurance company $50,000 a year (that was for a SINGLE medication not to mention the other stuff I was taking) that would be the same cost for years on end the insurance company didn’t blink an eye to pay for that. But for what were spending in a single year with all my medical bills combined, they could pay for this treatment as a one time (well maybe more later down the road but at a significantly less cost) and put me in remission, get me back to the person I used to be and get back to work. Insanity! The government allows you to file for disability for Lyme but the insurance companies won’t pay for treatment. That’s where your tax dollars are going…wasted on disability for people who CAN get better. I am thankful that I have an incredible mother and several other family members who are paying for my treatment because I sure as hell couldn’t do it on my own.
The house that I worked so hard for, may have to give it up after treatment to try to get back on my feet. I lucky that I was able to medically retire from my job (still waiting for it to kick in but I’m assured its coming.) That being said the “pension” will barely cover my bills. Because of the treatment regimen I’m going to be starting soon, my mom is having to move in with me. NOT that I don’t love my mother, but I prefer to suffer alone. I don’t like having people take care of me and do things for me, Ms. Independent over here:) Its a lot to have to swallow my pride, to give up the life that I had but I’m hopeful that with this treatment, I will have a better life than I’ve had in over 10 years (of course that’s after 9 months of misery.)
I try to keep things in check but as this disease slowly destroys my body its difficult. I have a one day at a time attitude, but at the same time I keep thinking that 9 months in the grand scheme of life is really not that long. With a brain that’s not functioning (literally I am not getting the right amount of blood flow in my brain) its difficult. I’m trying to stay positive in all of this and yes, I do have my moments with an occasional meltdown thrown in far and few between.
If you have an “invisible illness” I believe you. I believe that what you have is real and I empathize with you. I hope you’re lucky enough to have a good support group (if not find one:) I cannot express how certain family members and a few friends have made this easier to stomach-all the symptoms and changes. Stay positive! You may have to be your own doctor, do the research and don’t give up or give in to a diagnosis you don’t believe in – LISTEN TO YOUR INTUITION!