About Me: Female, 48, Loveland, CO, member since Apr 2011
I have had bouts of illness since I was a child. Born premeturely, with a twin of normal size weight while I was extremely small and continued this trend to this day ( wore a size 6X in 9th grade). I was dx'd with langerhans cell histiocytosis in 4/2005 after 2 years
[More] of chronic pneumonia, which was found by a radiologist when a pain management specialist finally got a CT of my spine, at this point, having been told many times by many doctors that my illness was all in my head, it was a relief to finally have someone believe me., when the chest ct was done the oncologist and surgeon both stated that my lungs look like the milkyway with all of the tumors (some as large as grapefruit)., I've had a bout of cervical/uterine cancer in 1989/90 (which also took forever to dx because they said I was too young to be experiencing such cancer), my teeth began giving me trouble when I was around 3 or 4 years of age, remember going to the dentist regularly to have needles lined up on both upper and lower gums to withdrawn infection (teeth rotted from inside out and again having this problem with adult teeth), in 2006 the upper left quaderaunt of my jaw began swelling after a tooth was removed: biopsy showed LCH:EG; currently COPD, asthma, broncitis all seem to play a major role in how I feel from day to day but I try to live as full a life as possible. I've had 3 spinal cord injuries that have effected C3-C7 which are now fused, leaving me in constant pain, neuropathy also contributes to the pain I feel daily not to mention the excurciating headaches I contend with each and every day. Does anyone have any ideas on how to get people to realize that you are in pain when they cannot necessarily "see" what is causing the pain? How about getting doctors to believe that you are in pain? I'm so tired of doctors accusing me of "drug seeking" when I purposely refuse medication unless I absolutely have to have relief because I've tolerated it to the point of exhaustion...and the pain is beyond 10 on the pain scale. One doctor found out the hard way that I didn't ask for help until I could no longer tolerate the pain by me throwing up on him from across the room on his new shoes and pants; I was admitted to the hospital for observation for a week while they "TRIED" to figure out the cause of the headache. Who would pretend to be in this kind of pain? Why would you want to be in this kind of pain? sympathy just isn't a reason anymore because there really isn't much of that out there....people are too into themselves in most instances.....so why bother? My dogs can tell when there is a problem such as blood sugar too low, oxygen levels low, and they have even alerted the professionals for the need to test me for LCH again. I'd like to go back to work but every time I think that might happen I get sick again; balance is a problem, but I still try to hike when I feel good (or relatively good), I ride my HD motorcycle when the weather permits, and I am training dogs for mobility and medical alert functions and hope to do the same for others...time is something I have so much of and this is rewarding and also a major need for some people; the cost of these dogs from organizations is rediculous as many people who need these animals are on very limited incomes and cannot afford the 10-20 thousand dollars it takes to get them. I know I couldn't which is why I am training mine; ADA laws allow for a person to train their own animals to perform the functions they need. Thank God I have had such wonderful dogs to work with. I have trouble maintaining my weight; I loose weight easily and I am not supposed to have a large amount of sugars due to hypogleciemia (sp?). Ulcers have been an issue and intestine and bowel problems have been unrelenting since I was a child (worst bout lasted 8 months before the doctors actually did something about it; by that time the ER was alarmed and I looked like I was 8 months pregnant). Arthritis pain is not easy to deal with in conjunction with all the other forms of pain running through my body all at the same time; of course it can't be just one painful malady....! I feel for the children dealing with this disease. What I really want to know is why our government does not do more for the so called "orphan diseases or at least for those who suffer with them"?
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