I put up a link the other day about Google keeping track of where people go via cellphone. I learned a new one just now. Apple keeps track of where I have been and for how long.
Settings > Privacy > Location Services > System Services > Frequent Locations
In 2 months, I have gone to Deseret Industries 11 times, the nearby doc 2 times, the farmer’s market once for 40 minutes, Liberty Park once for 1/2 hour, Temple Square 40 minutes, the health clinic for 2 hours and the hospital for 3 hours. That’s IT! Kinda creepy, kinda cool.
I slept a long time. Woke up feeling better and within about 5 minutes, I was back to weak, shaky, SOB and all that. I pulled a precooked artichoke out of the fridge for lunch. Bending gave me the shakes like never before :-o I had to stand up, holding on to the top of the fridge while gasping and quaking for what seemed like forever. Pretty cold with me practically in the fridge!
After eating my artichoke, my heart was trying to pound out of my chest. I checked my blood sugar and it was 256! From an artichoke!
It’s a good thing that I write on a cell phone. With my left hand, I rest it on my belly. I keep my right elbow tight to my body, rest my right forearm on my belly and switch it up between using my index finger or thumb to type. That’s the only reason I CAN type. With a keyboard I would be all over the place when I get these tremors and shakes.
When I feel so sick and quivery and am struggling so hard to breathe, I am desperate for distraction. I love being able to get online to read support groups, check out LDS stuff, read about science, look at pics and keep up with the news. Love my iPhone! Thank you, Heather :-) The part I hate is when my speed is throttled, like right now. It is sooooooooooo slow! But, it sure as heck is better than nothing ;-)
This new flare up is scary. I am running out of options to deal with the weakness and breathing difficulties. As far as I know, the only treatment is IVIg. Some folks with MG and/or lupus get plasmapheresis. No doc has ever seriously tried to get me to try it. I don’t know why, but plasmapheresis has always scared me. Since it is also expensive, my chances of getting that in Utah are also probably pretty slim.
No public transportation tomorrow. SLC is just weird when it comes to getting around. I hope I don’t need to go to a hospital.
I torture myself by reading a bunch of RV blogs and keep up with lots of outdoorsy news feeds. All the gorgeous pictures this weekend are sure making me miss my former life as a woodsy homesteader and camping maniac. Sigh…..
Anybody watching the MDA Marathon? I used to be happy to know I was “one of Jerry’s kids”. Myasthenia gravis is under the umbrella of the Muscular Dystrophy Association. It was thanks to an MDA clinic doctor that I got my first, and most of my subsequent IVIgs. Figures the MDA in Utah sucks. The idiot neuro who has been the bane of my existence here is on the board :-( It made me sad to see the marathon on TV and realize even that support has been withheld from me in this state. They were good to me in NY, VT and FL, though :-) In AZ I wasn’t able to access an MDA clinic because they didn’t take Arizona’s version of a Medicaid. In Vermont, the first MDA clinic visit was free if you didn’t have insurance. Sometimes it really is hard to believe we live in the UNITED states!
Just before 10 PM, I took the garbage out. Four of us converged at the door with our garbage at the exact same time :-p As usual, seeing the hookers and druggies coming and going from my apartment building was eye-opening :-o Three of us sat near the door in the wonderful 66 degree night air and watched the action. Eventually we all got scared and went in.
I am frustrated with my body. Maybe I should be happy to be experiencing all the quivery tremors and muscle spasms. It means I am still alive! :-)