school help: I’ve been having a hard time. - Help.com

I’ve been having a hard time.

And I dont know what to do, or where to look for answers. My story is complicated but maybe someone patient can and will help me.
I was raised in a home where “prayer” was used in place of medicine and doctor visits due to my parents religious views (they are Christian Scientists). I became very sick when I was 9 years old, I couldnt walk and was bedridden for 3 weeks. I finally was able to get out of bed and return to school but from that time on had very extreme back and neck pain. I had never been to a doctor’s office and of course if I had asked my parents they would have brought me to see a doctor….but when you’re 9 and have been raised thinking you DONT go to doctors, the unknown scares you. so I never did. Until I was old enough to realize that when somethings wrong, you do something about it. I had so much pain, and couldnt rotate my neck all the way to the right side and didn’t know why so I finally decided to find out, even though I was still scared to go to a doctor’s office.
I was sent to specialist after specialist. And since my family never went to doctors we never had health insurance. So every visit and every test came right out of the pocket, and my parents, although inadvertantly, never failed to make me feel guilty about it. After xrays and CT Scans, I was diagnosed with Spasmodic Torticollis…which isn’t even exactly what is wrong with me. I apparently was born with my C-1 and C-2 (top 2 vertabrae) fused together and rotated to the side. This with the torticollis is a very painful and debilitating illness. Theres problems with the lobe of my brain that controls movement, the banal ganglia. It sends constant muscle contractions to my neck. Basically, imagine having a constant charlie horse in your neck. My back pain is very intense. The doctors know I was born with this, but do not know why I had the sudden onset of pain when I was younger. I found this all out a little over a year ago. I am now 20 years old. I had to live in pain for 11 years until I found out exactly why it was happening.
I thought, finally I was going to get some help. Wrong.
I tried physical therapy for a small period of time and found it unhelpful. My only other option was to try Botox injections to relax my neck muscles which would relieve my pain. All during this I was trying to get health insurance but got denied. The injections cost $950 (not to mention, the 5 minutes that took for them to do the CT Scan, cost over $3,000). They didn’t work at all. Plus I feel double horrible because I feel like I wasted money. The doctor said “Oh well, I guess we’ll try physical therapy again”. They also mocked me about my money situation and told me I should try winning the lottery, when they do not even know the half of what I’ve had to go through. Ive tried massage and other non-medical alternatives but nothing works, as most things are just temporary relief. Through this my parents have been supportive that I want to go the medical route instead of prayer, which they do not agree with. But since they have no concept of doctors and dont really understand medicine its been as if ive been going through it all alone. Its very frusterating.
The pain has been getting worse. I had to stop working in September of last year, and dropped out of college a few months after that because of the pain. I have a hard time sitting OR standing for more than 30 minutes. Trust me, painkillers do not work either. I’m at the end of my rope.
I can’t work. I can’t go to school. I can’t stand living beneath my parents roof any longer. They are VERY difficult to live with due to all of our conflicting opinions, and also because I subconsciously blame them for all my pain. I think I have the right to be angry at them. But on the other hand, they were only doing what they thought was right, since Christian Science and a world without medicine and doctors is the only thing they know.
Having to deal with my parents on top of my medical problems, on top of the depression Ive been going through since I was 10, on top of life in general has become unbearable. I’m in so much pain, Im worried there may be something else wrong that I dont know about. Some days I feel like my body is falling apart. My joints ache and I get exhausted very easily. And I’m only 20!! I’ve been told I dont have any more options, but I don’t want to accept that, or else I dont think Im going to make it much longer.
I dont know who to talk to about this. There has to be a way for me to get on disability? Or something? I cannot live at my parents house a day longer. But I cannot afford a place of my own because Im unable to work to support myself. Please Please Please, I do not know where to turn to. My friends do not understand, nor do they know how to help me, besides, its my problem not theirs. My siblings have been very supportive but do not know what I should do either. Please. Someone. Help.

This open post was written 4 months, 3 weeks ago | V/U/S: 235, 10, 6 | Edit Post | Leave a reply | Report Post

Insurance, Medicine, Muscle, Money, Prayer, Physical therapy, school, Health insurance, christian, Year, health, disability (How Tags Affect Reciprocity)

A logged in and verified Help.com member has the ability to setup a Friends List and invite others to help with posts.