I can't imagine anyone wanting to read about my health problems. I guess maybe it's just a good time to vent. I have been sick my whole life with what I call chronic multi-system dysfunction. Now I'm a 34 year old single parent of a 10 yeard old boy. It may sound dramatic but the truth is I know I'm dying. I can feel it. I keep going back and forth from denial, acceptance, anger, depression and back to denial again. I'm really angry at doctors right now for a lot of reasons. No one has ever figured out why I am so sick. They continuously treat my stmptoms instead of seeking the underlying cause. I've learned that unless you have something routine and treatable doctors will dismiss you. If referring you out to a specialist doesn't result in answers than they just give up.
I weighed 5lbs 2 oz at birth. Any type of formula made me projectile vomit. I dropped to under 5lbs when a nurse suggested to my mom that she try goat's milk. I tolerated it so that's what was in my bottles.
At ages 3 and 8 or somewhere around there I almost died from Giardia and Shigella. It was all down hill from there.
My childhood was filled with chronic bouts of pnuemonia, strep, ear infections, and I had the chicken pox 5 times. Yep, 5 times. The last time I had to be hospitalized and I don't know what they did but they finally got rid of it. I also had a chronic dry cough that lasted well over a year. My parents had to put books under my bed to keep me elevated so I could try to sleep. I also had the mumps and mono.
At 15 I was diagnosed with Endometriosis with my first period. I had two surgeries by the time I was 17.
At 19 I was diagnosed with polycystic ovarian disease, hyperinsulimia, insulin resistance, and high cholesterol. I responded well at first to the Metformin but then developed side effects.
At 20 I was hospitalized for an infection in my lower back. My WBC was over 21,000. They did all these gastro tests only to tell me that I had IBS but that IBS didn't explain the infection or the elevated WBC.
As I grew older I would get chronic throat infections, asthmatic bronchitis, pnuemaonia, ear infections, sinus infections, muscle aches, and fatigue. I was always that girl that missed alot of time from work. I was diagnosed with severe dry eye, eustatchian tube dysfunction, and Gerd.
Then I developed a problem with my lymphnode glands. The glands in my neck were swollen for more than 6 months. Doctors finally decided to biopsy one from my neck. It was swollen but negative.
By 28 I went downhill rapidly. I was hospitalized for an undiagnosed abdominal infection with an elevated WBC, a fever over 102, and a positive CT scan. The scan showed inflammation at the terminal illium and just inside my large intestine. It also showed swelling of a lymphnode in my abdomen. Again I went through alot of gastro tests. They ruled out Chron's and finally ended up telling me it wasn't a gastro problem. I ended up getting hospitalized for three more of these infections and they still remain undiagnosed. My Gyn did an exploratory laproscopy and ruled out a gyn problem. I also saw infectious disease doctors and a hematologist.
Then I developed tarsal tunnel syndrome and had to have surgery. My muscle aches turned into acute bone pain, joint pain, weakness, and nerve pain over my entire body. A Rhuematologist diagnosed me with Fibromyalgia but I didn't respond to treatment. Pool therapy made me worse. My current Rhuematologist diagnosed me with a condition called Enthesopathy. Apparently I have a problem with the Enthesis in my body. My muscles are like glass. I can move the wrong way and suffer a soft tissue injury. I became permanently disabled at the age of 29.
At some point I tried Metformin again but even at the highest dose my insulin was still too high. I was offered other less effective drugs that cause weight gain. My HDL has been too low and my LDL almost twice the normal limit for 15 years now. I have finally been put on a statin.
Last year I had to have emergency surgey because my gallbladder was acutely inflammed.
For the last three years my body has continued to deteriorate. I get injections of prolotherapy all over my body just so I can maintain normal functioning. I have excessive hair growth evident by ingrown hairs all through my bikini line and now in my breasts. My WBC is always elevated. I have night sweats. I sleep with my window open in the winter time but that doesn't help. Now I have morning sweats as well. I can't have my morning coffee without sweating like a pig. I always have abdominal pain and my abdomen is tender to touch everywhere. Everyday I am sick. I get headaches, nausea, fatigue, and sometimes just a general ill feeling. I have pain in my whole body, not just in my muscles and bones, but inside. It feels like pain in all of my organs. I get chest pressure and chest pain. Sometimes I get bouts of dizziness and lightheadedness. If I do anything like go to the grocery store I come home exhausted and need to lay down.
Three weeks ago I had finished my morning coffee at around 7:30 am. A little after 9am I was hit like a brick wall with the most incredible urge to vomit. It was a very odd sensation because I wasn't nauseous and I felt no urge to run to the bathroom. At the same time I started to pass out. I almost passed out three times. I drank a glass of OJ just in case it was my sugar even though I'm not hypoglcemic and had had coffee. Eventually the passing out stopped but the urge to vomit remained. Then I developed a headache in the right side of my head. You could literally draw a line through the center of my head. I also developed a vision problem in my left eye. It was really weird. There was like this transparent line through the center of my eye. In the middle of the line was double vision and the line kept shaking rapidly. I ended up laying on the couch with my eyes closed for five hours. Finally the symptoms disappeared and I was left feeling weak and tired. My doc ordered a head CT and that was negative. My bloodwork showed a WBC of 14.8 and an elevated hematocrit. Six months ago my WBC was 12.5 and my Hematocrit was elevated then too. Like I said, my WBC is always elevated. I been checking my sugar regularly and it is always normal. I checked after a 12 hour fast and it was normal. I checked it two hours after having coffee and it was normal. So maybe it was just a freak sugar thing because I am a freak afterall.
I did make an appointment with my endocrinologist. I have a lot of questions. Why do I have hyperinsulimia and insulin resistance? Could the chronic high levels of insulin in my bloodstream be wreaking havoc on my body?
I saw the Hematologist for the second time yesterday. He is testing me more agressively this time around. I have to have a CT scan of my chest, abdomen, and pelvis. He did bloodwork and it wasn't outrageous but also not normal as usual. My WBC is elevated. My hematocrit is normal this time. My platelets are elevated and my MPV slightly lower than normal. My BA, MO, and EO are all elevated though I can't say significantly. The Hematologist discussed with me about having a bone marrow biopsy. We're going to discuss it more after my CT scans.
I want answers. I want to get better. I'm tired of being sick. It's weird because it's like I hope for a diagnosis, no matter how bad, so that maybe I can get treatment and get better. My son grows up with a mom who needs to lay down everyday. I haven't had a boyfriend in six years because a boyfriend would want to do things and I'm just not well enough. On those rare days when I have a little energy and don't feel too sick I spend quality time with my son. I find myself trying to teach him as much as possible.
Lastly, I want to talk about irony. For years now I have been so sick and tired of being sick, having bloodwork and tests, that I have blown off doctor's appointments and my blood work. With my gallbladder I had severe pain in the upper most center of my abdomen. The pain radiated into my chest. I didn't know if I was having a heart attack or not. Yet I sat on my couch in this severe pain for 4 hours before I called my mom. With what happen a few weeks ago with the passing out and headache and vision and such I didn't call an ambulance. I didn't even call my doctor. It was just like, ok something is happening to me and I'll get through it. It was my friend who nagged me to death about going to the doctor's the next day. I realize now that my behavior is stupid. But my point is irony because so many times I have had doctors treat me like I'm some kind of hypochondriac instead of the sick person I really am.
So that's my story.
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