Medical Update and Popsicles

So much for blogging more once I got voice-recognition. But here I am now.

Last Wednesday evening, February 8, 2017, shortly after going to bed, I started to cramp terribly in my lower abdomen, followed by bowel incontinence, and the dry heaves. Initially I thought I had food poisoning, but after about six hours I finally called the ambulance.

I found out later that my first blood pressure was fiftysomething over 25. Not so good. Once they got me stabilized, they had to send me to a different hospital because ours was full. I chose St. Cloud hospital over Abbott Northwestern Hospital and I'm very glad that I did, for the most part. They were very thorough. They have a unit there called Medical Progressive Care Unit. The care is partway between a regular medical surgical floor and intensive care unit. They watched me closely and were very gentle with my overwhelmingly painful body.

The final diagnoses, after some varying conjectures, was an antibiotic resistant E. coli UTI that had gone septic (in other words the bacteria had gotten to my bloodstream). I was a pretty sick little girl.

That was one week ago tonight, February 15, 2017. I'm still pretty tired out, but I'm here and getting stronger every day.

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 For the last six or seven months I have been experiencing extreme neuromuscular pain to the point of screaming whenever I had to move or be touched. There were times when I just begged for the pain to be over. I still don't really have an answer for why it's happening, but at least for the last month or so they've been able to give me a medication that helps with the pain. Unfortunately, side effects are starting to creep up and we're having to ween back on it.

It has been horrendous beyond words. I understand why people with chronic severe pain eventually choose to end their lives. I had my moments, but I have babies to live for. You see I'm going to be a great aunt yet again for a second time! And I don't want to give up yet. Ain't going to happen. I haven't come this far to give up now.

I went to see a new doctor at Sister Kenny Institute, or what is now called the Courage Kenny Institute in Minneapolis. She is what is called a Physical Medicine and Rehabilitation physician, or what used to be called Physiatrists. They specialize in the physical needs a full-time wheelchair users and the severely physically disabled, as well as post cancer rehabilitation.

For a number of years now I have been very confused about my physical condition. Although my rheumatoid arthritis was in remission, I continued to get weaker instead of stronger. I was sent to the Mayo Clinic neurology department where they decided it was Steroid Myopathy (the steroids start to kill the muscles and they become weak). The good news with that is that once you get off steroids there is a chance that your muscle strength will come back. This new physician is not so sure that myopathy is the right diagnosis. She believes I have some sort of neuromuscular disorder that I have had for a very long time but no one caught. She wants to check with the rest of my physicians first before telling me what she believes it is. If she's right, there is no cure or treatment, although she says they are doing a lot of research on it. But she refuses to tell me until she has spoken with my other doctors. So I wait another month.

I left her office in tears, but kept trying to remind myself that I was no different from the moment I walked in that door until the moment I walked out the door. Whatever is going on has been going on for at least seven years if not longer and the only thing that is different is that maybe now it will have a name. The saddest thing though, is that at least with the myopathy diagnosis, there was a chance I might be able to get some of my strength back. But maybe she's wrong too, after all they do call it a medical practice or the medical arts. My first rheumatologist called it an educated guessing game, and he was right.

I don't go into the doctor expecting anything to be fixed anymore. They help as best they can but can only do so much.

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 I experience a lot of sadness these days, but I have to remind myself a lot of it is weariness from the pain, and side effects of medications. I have good days and bad days, but I keep going. I have a seven-year-old furball that needs her mom, eight staff members that need a paycheck, nieces and nephews that I want to share memories with, and babies to love, make quilts for (more accurately supervise the making of ), and watch grow. Sounds like a hell of a lot to live for to me.

NOTE: my neighbor just came in and treated me to a popsicle. She lifted my spirits. It is the little things that matter.