mg-girl

Ummmmm…..yesterday was awful. I felt icky all day long. There were strange pains in my legs and back and at no time was breathing easy. I napped in the middle of the day and was in bed around 9 PM. I had no choice but get in bed with CPAP and oxygen. I felt like I was suffocating. I woke up at 7 AM and was sooooooo confused! It was as if I had forgotten how to sit up, walk and breathe. I discovered the laptop had not been plugged in for the night. When I went to test my blood sugar, I found a used test strip still in the meter. I must have really been out of it last night! I have piercing pain in my left lung that also makes my back hurt….plus my whole spine is in agony. There is no position sitting, standing or lying down that makes it go away 😦 Am I getting pneumonia? Something feels very wrong.

be-nice

Ohhhhhh…..God help me! And my upstairs neighbor, too. She just came to my door to ask if I wanted anything from the store. I said no, but thanked her. I also told her that the fact that cigarette smoke and noise bothers me does not mean I dislike HER. It means I dislike smoke and noise. But….after she left, I realized that I should not be so nice about it. I don’t hate her….I hate her habits….but because she abuses substances, she does boneheaded things. I never know how to deal with this stuff. Lately people are bringing me back to all my PTSD hot button issues…the neighbor, the surgeon, random druggies and alkies in the building, etc. Tired of mental and physical trauma. When I am so weak mentally and physically, I have no reserve strength as a buffer.

breathing

Breathing got more and more problematic from when I woke up, until noon. I had to go get in bed with the CPAP and oxygen again. I woke up 2 hours later and felt better…until I sat up. Now, an hour later, I again feel like my chest is being crushed. This sucks 😦 I wish I knew what to do.

mg-symptoms

I got a Google Alert for this story about a young woman with myasthenia gravis. What a difference between her story and mine! I was always made to feel sub-human when I was weak. I got blamed for being lazy or crazy more years than not. I grew up with RA and MG. I had those things going on for most of my youth. Both happened cyclically. Ironically, I, too, was a volleyball star. I could win whole games with my powerful serves. In all the sports I played, I would be strong one week and the next everything hurt and didn’t work right. Since everyone else but my grandmother next door seemed to think it was all my fault, I believed them. I did not know it when I was young, but grandma had RA, too.

not-lazy

I was going to the University of Montana when I got diagnosed with RA and asthma. I went out jogging in a temperature inversion and ended up in the ER. I can still remember how scary it was not to be able to breathe. In hindsight, it’s obvious that I had MG then. I was around 19 or 20 when I collapsed downhill skiing. I never again had enough strength to hold myself up on skis or skates. I internalized all that as my fault.

wendyfixingvw

That’s me fixing my VW bug in the mid 70’s. I wasn’t fat. Because my disabilities came and went….and I always felt guilty for not being perfect, it took decades to figure out why I was hospitalized so much. The ability to diagnose autoimmune diseases has come a long way since then. The internet also changed everything. Seems like I was always going full tilt with too many jobs and classes….or was too sick to be doing much.

you-have-mg

After reading that young woman’s story about graduating from college thanks to “an army”, I could not help but wonder what my life would have been like with both proper diagnosis and support. It is what it is. Sigh….

mg-sleep

It’s evening and there has been no improvement in my breathing. I’m exhausted just from being alive. I left my blinds closed and door locked after the upstairs neighbor came in. It was nice to just stay in my nightgown and not worry about people popping through my door. I am still in burn-out mode.

mg-worse

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