First up: my health and how much it sucks right now and why I need robotic body parts. Or a new body - I saw it on the TeeVee, TeeVee don't lie.
My abdominal muscles and nerves are healing, but I still have endometriosis. All the symptoms are practically textbook, but my (male) Gyn says he doesn't know if it is the cause of the horrible, excruciating pain. I started Lupron for the second time in February, four weeks ago this Wednesday. Lupron puts you in a chemical menopause.
The first time I was on it, last summer, we went to Nebraska to visit family around the Fourth of July. Aunt Jenny has air conditioning, but her house is a leaky old farmhouse, so unless you're on top of the grate when air is coming out, it's humid, hot, and miserable. I had a huge fan in my room, but all it did was move the hot air around. One night, I actually slept on the floor grate in the upstairs hallway. It was still the first month of Lupron, I got the first monthly shot around the 15th of June. Hot flashes are a bitch.
When I went to Washington (I was better, dammit, I'm going to school there!), the gyn I saw there took me off Lupron before the 6 month cycle was complete. I only had shots in June, July, August, and September. (I came home in October, after about a month up there, I didn't go to school, and that really bothered my uncle.)
The thing about Lupron is - it proves nothing unless the pain goes away. If the pain goes away, yay, I have endometriosis! If it doesn't, I could still have it, because some people don't respond to the medication. So my gyn makes no promises about the future, about what's wrong with me, all he can do right now is treat the pain.
The pain sucks, naturally. Last night, I hit 10 on the 1-10 pain scale used in hospitals. It hasn't been that bad today, but it's always been worse in the afternoon and evening.
Yesterday, I was nauseated all day, whether I ate or not. I also started bleeding again, something that should not be happening because, in addition to the Lupron, I'm still on birth control.
I've been getting some wicked headaches at the front of my head, so they may just be sinus related - it is spring time, and I do live near a cotton field. And I've had a sore throat and minor drainage for a few weeks now.
And the hot flashes started yesterday with a bang. It's March. It's Memphis. It sucks, I couldn't cool down even in short shorts and a sports bra. I haven't had any yet today, which is good, and I haven't been nauseous, which is great. I also haven't been hungry. I haven't been hungry a lot since the shot, maybe even before. And when I am hungry, I can only eat a little bit before getting sick to my stomach.
I've had cameras stuck down my throat and into another orifice 3 times in the last year, that latest the first week of November - just the throat, stomach, and the upper part of the intestines. In September, I had the same. May was both ends, yuck. In May, they found ulcers. In September and November, they found signs of ulcers, but nothing that can cause pain.
I've seen a gastro doctor for at least 4 years now, I always have an upset stomach, and in the last year, bowel movements have started to hurt, along with emptying my bladder. But there's nothing inside the intestines or bladder to explain it. There's still a kidney stone in the left kidney, itty bitty, but it's in the kidney and going nowhere, as of right now.
The kidney stones are made of calcium, of course. So stop taking calcium. Nope, no parathyroids, they were removed with my thyroid because they were too small and damaged to function. So I'm stuck with the threat of kidney stones for the rest of my life.
Speaking of kidney stones, let me tell you the horror story of last July and August.
The summer was painful. We assumed it was endometriosis, and would go away as the Lupron kicked in. Eventually, I had to go to the ER, where they did a cat scan and found that my right kidney was swollen to twice its size because stones were in the ureter, blocking everything. Since the kidney was swollen, it pushed everything, which is why I had pain everywhere, not just on the right side.
My first urologist that I saw with the first, easy kidney stone that passed on its own, screwed up big time. He told us he would put a stent in my right kidney to drain it, and then use lithotripsy to blow the stone up so it would pass in pieces.
The day of the procedure was July 26th. I woke up in worse pain than I had when I came in. He told us that he never said he'd do the lithotripsy that day, and the lithotripsy equipment wouldn't be at that hospital until August 8th. I remember my horror, along with writhing on the hospital bed in tremendous pain.
I told the nurses and the doctor that something was wrong, and was told that people live with pain. I was flabbergasted at that. "I have pain, your mom has pain, people live with pain."
I did nothing the next two days but watch cable (we got it because I was told I'd be like this until August 8th, and I needed something to watch when my brain was fried from pain or pain meds and couldn't read. We still have it.) and leak urine. My mom bought Depends for me.
There was a string hanging out Wednesday, and it got farther and farther out until Friday morning, when we went back to the doctor. I had to sleep on the couch so I'd be downstairs where my mommy could keep an eye on me, and Thursday night, the stent did its job, and my bladder emptied, soaking the diaper, the sheets I was laying on, and the couch cushion. We had to get a new one.
I remember getting up Friday morning, stripping everything off, and running to the downstairs shower, a little trail of urine following me. I was crying in the shower, and the blue stent had dropped even farther - I could see the damn thing!
We went straight to the doctor and he accused me of pulling it out when wiping hurt for those lovely 48 hours. They told me to sit on the table, not even putting down extra protection because of the urine. He pulled it out, that hurt like hell, and said we'd have to wait until the 8th, and without a stent, my kidney would fill back up, it was my fault, not his.
So we went home, about a 20 minute drive, and Mom hit every pothole she could.
She called my case manager, and she said go to the hospital with the lithotripsy equipment now.
So we did, we went to the ER at the hospital that had the equipment. I checked in Friday evening, probably, because of the time spent in the ER. However, we got to the ER by 10 and saw a doctor by 11, and they could not contact my urologist.
I did not get seen by a urologist until Sunday afternoon, and nothing was done until Tuesday, when they said they got rid of all the stones and put a new stent in. That one was to come out the 14th. I was still in a lot of pain, and when I had the stent removed I kept saying something's wrong, something's wrong and was told nothing was wrong.
We went to the ER that night and something was wrong, there was still a stone in the ureter. The docs refused to believe us, so we had to bring the cat scan results to them. Then I was checked in to a different hospital as an adult. It was the 15th, I spent my 18th birthday (August 11th high as a kite.
The 16th, they did another lithotripsy, placed another stent and sent me home. That stent came out the 18th, thankfully.
Since then, my kidneys have been fine, but I've still done two 24 hour urine collections, and they are such a pain.
One theory as to why I'm having gastro and urinary pain when there's nothing inside is that the endometriosis has attached itself to the organs and body parts in question, causing lots of pain. And you can't prove that without doing another laprascopy, opening me up.
And that went well - it caused major nerve and muscle damage. Though the laprascopy isn't entirely to blame, there was the kidney stuff in the middle. The nerve problem was diagnosed in November, the muscles January. I take my meds, I do my physical therapy.
Well, that's about it, I have some low grade pain right now, 5-6 on the scale, I'm not moving to see if it gets better or worse.