edema

It used to be Lasix that made me very sick…but Bumex and spironolactone were OK. I was on all 3 when my CHF was bad. So I started taking .5 mg of Bumex last time I went to see my internist. It seemed like I was getting more fluid…not losing it. I complained about fluid in my lungs. That got worse until I found out I had pneumonia. The NP prescribed 2 mg of Bumex at the same time he gave me the Cefdinir. When I felt sicker and weaker, I thought it was from the antibiotic. I swelled up even more so he doubled my dose to 4 mg. The whole inside of my mouth kept being on fire. Then the burning was the entire length of my digestive system. I continued to blame the antibiotic.

I did not take Bumex the day I saw the NP and went to the hospitals and I did not take Bumex Friday because of all the sleeping I did and all the people who were here. Both of those times, my sore, bumpy mouth and lips got better. Thursday the sores in my mouth were causing a great deal of distress and pain. Friday I thought maybe I had finally put enough lip balm on to make my lips better.

I’m not sure how I figured this all out. I decided to Google side effects of Bumex. It listed a bunch of the bad things happening to me! I must have developed a sensitivity to that med after years of use. Sigh….but at least I have figured it out. Yet another DUH!!!!!!!!

Then I looked up spironolactone. It says to use as short of a time as possible. I wonder if that was known back when I took it for months? Me and diuretics do not get along šŸ˜¦ I think I should go back to the tried and true eating watermelons. I hate pharmaceuticals. Each time I get into an escalation of meds, I get worse. For long time readers….do you remember how I recovered from the 9 day hospitalization when they drained over 50 pounds from me? I quit their stupid CHF program, barfed for a couple of weeks and fled to Florida to go camping!!! The docs and nurses were livid. They said I would die. Pfffftttt….I think “modern medicine” is more likely to kill me!

I woke up and heard a faint beep. I was too bleary eyed to see what the insulin pump said. After sticking my head under the faucet, there was one beep and a weirdly black screen. I sat down and put on my glasses. Huh. The battery was dead. It had 2 weeks of power left when I went to bed. I must have slept through a whole lot of beeping. So, I put a new set in my belly plus a new vial of insulin and a new battery in the pump. Less than half an hour later, I accidentally caught my hand on the tubing and ripped it out of my belly šŸ˜¦ Sigh…..

Got it all fixed again and started perusing my online Smith’s coupons. I had 2 free Friday downloads….refried beans and tortilla chips. I wrote down a few things I might want to get and wheeled it to Smith’s. I was not amused to discover about half of the curb cuts are still blocked….despite most snow being melted and no new snow for days. A lot of good it did to have all the TV stations and newspapers talking about the problem!

Smith’s has almost identical lumps of snow on the sidewalk to the store….off both 500 and 600. The pic in the middle is an obstacle between the lot and sidewalk, so I had to compete with cars in the driveway. How hard could it be to shovel those spots?

crisps

Next I went over to Trader Joe’s. On recommendation, I bought a box of these. Yummy! šŸ™‚ I cut up a few of my chicken teriyaki meatballs in a soup bowl, poured in some creamy corn and roasted pepper soup and added a handful of shredded Swiss-Gruyere cheese and nuked it. Ate it with some crisps. Yum.

What a gloomy day! It’s back to temperature inversion time. The valley is socked in. Mountains are just barely visible. On TV, they showed the bright blue sky and shining sun that is above all this mess. It sure did a number on my lungs šŸ˜¦ I had to cough and spit all the way there, and all the way back…but was relatively OK in the 2 stores.

soaked-slippers

I had to wear slippers because my feet are too swollen for my boots. I looked down before going into Trader Joe’s and saw my leg leak had soaked the slippers. By the time I got home, the entire slipper was soggy. Yuck.

air

As we go for a few days without storms, the air quality is going to keep getting worse. If yellow makes me feel like my lungs are turning inside out, I am not looking forward to this week’s bad air! šŸ˜¦ I coughed more today than I have for several days. Although the infection part seems to be getting better, the swelling in my air passages is only getting worse. Tons of pain šŸ˜¦ As long as I am not actively choking, my oxygen sats are staying in the high 90’s the last 2 days….it just doesn’t feel like it at all.

crab

Only three times???

I am wicked bad MG weak. Scary stuff. I constantly forget just how weak I am until I try to get up or pick something off the floor or get something out of the fridge. My arms and legs can do one bit of movement, then the next step is as if gravity was turned up a hundred times. Hard to imagine unless you have experienced it. Always my first response is panic and terror. I have to be calm ASAP and then rest. After I sit in front of the fan long enough, I can move again. It scares the crap out of me to be this weak without IVIg. Not being able to breathe causes instant terror in anyone…but especially us MG’ers.

mg-crap

myasthenia-gravis

death

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