Well... I am currently 30 years old. I am married and have two beautiful little bumblebees. I live in the high altitude deserts of NM. In case you are wondering the sunsets out here in desert are unlike any I have ever seen. Purple, red, dark orange, just georgous. Western living has its own pace and is a world all its own.
My pain began a little over two years ago....
A few years ago I kept getting a persistent "burning / itching" sensation at the bottom of my back. It would get very inflamed and swollen and make me sick to my stomach from the pain. I went to my family doctor. He ordered an X ray and gave me some medicine and said he would call with results. He did call later in the week, but said everything looked fine, but to try to take it easy and let the muscle spasm pass.
The "Burning / itching" never did pass. It slowly got worse and worse, but I didn't bother anyone because if everything was fine... then I was just being a big baby. Besides, I am not a chicken and I should be able to handle a little back pain. ...So the inflammation, burning, itching got worse and worse through the summer until one day it became so intense I passed out while clearing weeds in the back yard. I woke up with ants on me and rosie crying. When I looked at my watch it wasn't more than 3-4 mins or so. But, I decided maybe I would see my family doctor again because it was getting really bad. I was getting very sick to my stomach from the pain.
When I see him, he is concerned. He thinks that if it is enough to truly "hurt" me, then he needs many tests run. That very day I am given full x rays and blood work up. During my X rays something weird happens. The techs are fighting. I have to sit there longer while they make phone calls. It was a long time because it was freezing in there. By the time they come back, they say they need more X rays. At some point someone goes to get the kidds crayons and coloring books and juice to keep them occupied. Then they do all the x rays they needed.
I go home and there are messages on my voice mail service. Asking if I could please make it in to town that night. That the wing of the hospital would "look" closed but to go behind the desks and take a left. So... I take the hour long trip to town. When I get there a nurse is sitting in the waiting room and he takes me back.
I am greeted by a lot of nurses and a couple of doctors that I will come to know as "spine specialists". (They have extra training in spinal deformities). They are all looking at an x rays on a lighted wall. They ask me to walk, to bend over, to stand on one foot, and I stumble and fall... Then they bring over a plastic spine and some charts. I was given an explination of what scoliosis is. They say that it is "mild" but that it is unusual because I had x rays done earlier that year and those xrays are normal. They tell me that they do not understand how I developed a full "levoscoliosis" in 3 months. That they are sorry but they want to make me as comfortable as possible while they begin a battery of testing. That I need to begin cortisteroid treatments. If I could please sign a paper giving them the ability to share my medical information so they can consult other doctors.
So, I .. umm... well, I threw a temper tantum. Told them to ** ******* themselves and they were the doctors. They needed to fix it. Fix it now *********. Screamed at the top of my lungs till I was out of breath. It felt like they had stolen my heart somehow and I stormed off....Not the most mature response in the world........
....so through that summer, fall, winter of 2008 I was tested and x rayed countless time. They are frustraited and running out of tests. They are concerned because apparently the majority of scoliosis degree progresses at less than 1% per year. Yet here I am progressing a couple of degrees every few months.
That christmas I begin to not feel very good. Hips hurt a lot. I tell myself it is no big deal, I will see my doctor after the holiday is over. I have guests from out of town, so the house is packed. Every christmas I have house guests from florida for a full month and half. They like the snow. But, something strange happens .....I begin to get tired. Very fatigued. I began little vomiting sessions every time I have to do non stop physical work. The pain becomes very intense and at some point I began to run a fever. So a month later when everyone has gone home and school starts again.... little rosie and I head down to the doctor and I tell him what is going on. He orders blood, X rays and MRIs the same day. My husband takes off from work to help with the girls.
I got calls the next morning to please come in. I go in they tell me I have progressed and they would like to do a much larger area of steroids. Increase and add in more pain medicine. At that point, they are just saying the same thing over and over as far as I am concerned. Might as well be in a Peanuts cartoon with the doctor saying "wha wha wha wo waa haa ha". In the back ground like the Peanuts school teacher did.
The next month is my vacation to Jamez Springs and I hope that will take my mind off things. So in March 2009 I go on vacation. While I am there I bite into some sausage and 2 teeth crumble out of my mouth. I didn't know it then, but over the next two months all but 6 of my teeth will eventually crumble out of my mouth. Until I have nothing left.
I am beginning to loose my vision as well. I already had a congenetial cataract removed a long time ago when I was twenty, so I went back to my eye surgeon for help and tells me I have rare build up on my synthetic lense and he needs to do surgery...
In June of 2009 I am in the last stages of therapy and my psychologist suggests I join a support group. I joined scoliosis association first, but soon find out that it was mostly children and their parents.... who had a lot to say. They were constantly fighting over there. Not exactly the place for me. So I searched for a different support group.
When I first joined healing well I saw so many people with "scoliosis" in their signatures and I stayed on as a member. It is a good thing I did because I meet many people and made a lot of friends. It changes my life for the better.
Also in June 2009 I begin to limp, my hip starts to tilt high and higher. I also begin to get shorter. At some point, something to do with my endocrine system comes back abnormal and I have to see a endocrinologist. He has me do a lot of tests and finds that though my parathyroid does "work".. it is just absorbing at a low rate 0.0025. Also, I apparently have Hypoparathyroidism. He thinks that problem is inherited thou. Especially since I was born with a cataract.
He begins to treat me. The boneloss stops (the parathyoird absorption under control). We being to treat the hypoparathyroidism (cataracts, tetany, parathesis et al)and all of the problems from that stop as well. Then, finally, I am cleared to have oral reconstruction surgery in fall 2009. So I have eye surgeries, oral reconstruction surgery and cortisteroid series all in the same 2 weeks...well I tried to, one got pushed back because of "risk of infection". Also, I think they thought I was crazy for wanting to do them all in same two weeks?.. So, had to wait extra week for the cortisteroids that time.
At some point I began to get "spots" like pepper throughout my vision in BOTH eyes. Eye surgeon is confused and says that the tissue of my eyes is softening and the cells on the lenses is stripping. There is no fix for this. Only temporary. Hes sorry he doesn't know why.
By christmas 2009 I want them all to leave me the heck alone and tell them as much. They all understand. I enjoy my holiday without doctors. During my "holiday" I get a big jump in pain, but am determined to "tuff it out".
By the end of feburary of 2010 the doctors resume. Only when we resume I find out all of my doctors have changed and the transitions are all already done. All I have to do is "meet" the new ones. No choice in the matter, nothing. It is what it is. There isnt any laspses in my care atall, it was all done very smoothly.
At some point hearing loss began. Something called "tinnitus" begins aswell. But it is a fancy word for "ringing in the ears". No known cause of that either.
I get bone scanns in March 2010 that show the treatment of the parathyroid absorption is working and I have good bone density but that I am measured at 5ft 5in (was 5ft 8.5in). The tetany, parathesis, et al is under control from the hypoparathyroidism treatment aswell. They are small but hopefull victories.
Also in March 2010, I get more xrays that show my levoscoliosis is larger and increased in the degrees, it now reaches from T10- SI. There is a secondary dextroscoliosis aswell (I had felt the "deep itching" between my shoulders for a long time at that point) from T4- T9 . There are degenerative changes in my cervicle area and it is "possible" that a "tilt" will progress there. They begin to seek genetic panels at that point. Other smaller concernes such as sclerosis, disc space, bone on bone, arthritic areas, facet arthropy (allows for the rotation on the vericle axis)in the x ray too but minor in comparision to my overall progressive deformity. But, I am not told about any of it, until I am given a report later in the month.
At the end of the month I am given a full report of true severity of ALL my conditions. It is much worse than I was led to believe. I cry and am very angry for about a week. I know my doctors and my husband were trying to protect me. I know I had A LOT of surgeries during that time.. I understand that, I really do. But, I feel betrayed. That was a very hard week for the "inside me". I felt very lost.
Now we come to July 2010. My endocrine problems are still under control thankfully. My vision is troubling. I need to get my eye lenses "asperated". The ENT wants to do surgery on my nose. My hearing loss and tinnitus is increasing. I have lost another inch off my height (5ft 4in)and my right hip is rotating towards the rear about 2inches. Walking is very hard right now. The pain has me on the verge of vomiting for the better part of my days. The pain is out of control and I know I should get more X rays, I am just not in a hurry. I want enjoy my time with my bumblebees during summer break. I am also scared of what will happen.
......so, that is my pain story. I was just telling a friend of mine the other day that a few years ago my biggest medical problems consisted of yearly vaccinations and acne treatments.....
.. Common you guys, dont make us feel silly standing out here all by ourselves. Come share your story too!