Chronic illness sucks! If you didn’t have a chronic illness, but felt like I do today, you would call 911 and be on your way to the hospital. With a chronic problem, there is often nothing to be done. You just have to deal with it.
In one of my support groups, today, a woman said she had never been to an ER. I was floored. There are people who have never been to an ER? I had been several times before I graduated from high school. I had to go many, many times before I graduated from college. Right now, I am doing pretty well for me. I haven’t been to the ER in almost 6 months 🙂
After all that has happened to me, I don’t even want to see a doctor ever again. I like my GP and internist, but what can they do for me? Without the possibility of IVIg, I have to admit that I feel rather fatalistic. I suppose I should hold out a sliver of hope because I haven’t heard from the judge yet….but I do not expect it to be in my favor.
Almost all of my major medical problems in Utah became political hot potatoes. Because I got West Nile Virus in a tourist area, I was never an official WNV statistic. Some doctors scoffed at the diagnosis and said it was a virus that would be gone in a couple of weeks. If only.
Then I was diagnosed with endometrial cancer through biopsy and a D&C. I had a hysterectomy that was supposed to be easy and laparoscopic. Instead, I woke up on a vent with a long slash in my abdomen. I had quit breathing during the operation. Soon the incision was infected and I had to have a second operation to cut out infected tissue. Then the line of staples was even longer. A few days later, the wound dehisced, leaving me with a gaping hole in my abdomen. I had to wear a wound vac for 4 months. More than 2 years later, and the wound still has not healed all the way shut. THEN I got the pathology report. I never even had cancer! I did have endometrial hyperplasia that they claim would have become cancer, maybe, perhaps. I went through unbelievable difficulties trying to get wound care because the surgeon’s office claimed they were no longer responsible for me since I didn’t have cancer!
So my pre-existing MCTD and MG merged with the WNV and hysterectomy….all the while NOT getting my regular IVIgs. I was not doing well. Next thing I know, I have diverticulitis. There are holes in my intestines, colon to organ fistulas…and then the incisional hernia started. And let’s not forget MRSA in my belly wound.
For the first time in my life, my voice got “broken”. I was acused of faking it more times than I can count. No two docs agreed on what was going on. Even the voice disorder docs were confused. After treatments with antibiotics, I could talk a couple of weeks each time.
So by the beginning of this year, I felt like my life was hanging by a thread. My neuro had prescribed IVIg and the insurance company said no. Three weeks after the denial, I ended up in myasthenic crisis in ICU. I got 5 IVIg’s in 5 days and I was a whole new person. After IVIg and solumedrol I could talk and walk!
The people who had been trying to undiagnose my MG and deny IVIg were livid. They had an aha moment. They decided since I got better from IVIg….that just proved I really have conversion disorder and not MG. They did not know that after they acused me of having a panic attack and then Munchausen’s, I had gone straight to a mental health agency. The psychiatrist and counselor said I absolutely did not have those things. So, when they said conversion disorder in the pre-trial, I had the counselor to say no….that’s ridiculous.
Since I have a couple of decades of MG diagnosis and treatment, it was going to be difficult to get around that. The medical conglomerate then decided to give me a bogus muscle test. The usual SFEMG takes somewhere between 1 and 2 hours to complete and includes the eyes. This guy did my test in no more than 15 minutes and did not test around my eyes. He told the judge it’s because ocular MG wasn’t the issue!
During the trial, the opposing doc told the judge he was going to give my good neuro a talking to. Next thing I know, I get a letter from the practice manager where my doc works. It says I am too complicated for their practice and to go to the big hospital for my care. I had been calling and leaving messages for this woman. She finally called me back today. She said the opposing neuro had, indeed, contacted my good neuro and convinced him to send me back to the big hospital. Of course it’s the evil neuro/insurance/hospital that are all one company and are hell bent on denying my care. I told my lawyers. Loved the response 🙂 “That does suck. No two ways about it.”
You know what’s the most disheartening? I am not paranoid. They have done all sorts of things to make sure they don’t have to shell out for IVIg. I am just waiting for the letter that says they will pay for no more Mestinon. That same unholy trinity did that to a woman I know here. They took away her Mestinon, she ended up on a vent….they said it was just conversion disorder and not MG….and they almost killed her 😦 She moved away, immediately went into MG crisis in another state, got IVIgs and has been in a rehab place for weeks to treat her MG. Funny how crossing state lines makes our MG disappear and reappear. She is one of the lucky ones. She escaped and got good care.
Part way through this post, the internet quit. I didn’t realize it until I tried to save my draft. Within minutes, a Comcast truck pulled into the parking lot. I called Comcast and the automated voice said high speed internet was down. For days now, the internet has been intermittent. Other times the strength of the signal has been pathetic. I am maybe 8 feet from the router! I have reset the darn thing several times. Just like my illnesses, I tend to believe things are somehow my fault. Nope. Something was wrong with the connection in this building. The internet works again and the repairman left.
I woke up in lots of pain from struggling to breathe all night long. My ribs were very, very owie 😦 Then I went through hours of gut distress. Now it’s time to cry, I guess. I cried a lot after talking to the practice manager. I keep trying to fight Goliath, but apparently I am no David. I wish my David would come along and slay my Goliath!!!!!
Well….really I cry a lot when I am frustrated….but I would rather the mean people think I am unstable and bitchy 🙂