Ah, ha ha ha ha…I thought I was giving a great big smile. Instead, it’s the MG grimace. I wonder what strangers on the street think when I give them a big grin and try to talk to them?

I saw the doc. The one I love…and I don’t say that lightly. This is the doc that cries because I am not getting proper medical care. The doc that always hugs me and usually kisses the top of my head. The doc that would do just about anything in his power for me.


And….of course I thought I was lightly smiling in this one 😛 I am such a text book case of myasthenia gravis. Sigh….

He says I need to see a podiatrist about the whole bottom of my left foot swelling up and being wicked bad tender. He originally said the bump on the bottom of my foot was a wound granuloma. I could recall no wound. He gave me a laptop sized piece of moleskin to use on my foot. I was to cut out ovals, then an oval inside and put the hole over the bump. Well…I have gone way beyond that now. I do not have to put weight on my foot for it to hurt. Just sitting here with my feet up on the ottoman, it will hurt like heck. And the whole rim on the outside of that foot, along the sole, is cracked and bleeding from me inadvertantly shifting weight.

The doc filled out my paperwork for a handicap hang tag. I told him I had handicap license plates for a couple of decades, but I no longer drive. I learned how important the placards are to have handy when I went without my wheelchair being fixed. When other people drive me somewhere….I cannot even make it to the door with my walker. That ride to the hospital was awful. I need to be let off at valet parking….by the real front door!

The doc gave me a script for diflucan because the hernia rip has a yeast infection again. I also got a script for clobetasol propionate lotion for my lupus sores. Once I saw it, I remember having clobetasol ointment in the past. I hope it works. My skin is a disaster area. The doc was properly horrified when he saw how much bigger the hernia has gotten in a couple of months.


I need to take new hernia pics. It looks like I have 3 or 4 basketballs under my skin. Nice belly….NOT!

Hey….my blood pressure was normal 🙂 120/80. My doc turned 60 this month. He said I am the most enigmatic patient he has ever met. He says he has never seen anyone with my particular cluster of autoimmune diseases who also has all these other problems. Tell me about it! How many people get West Nile Virus and end up in a wheelchair? How many people have MCTD? How many have myasthenia gravis? Skin problems? Humongous incisional hernias? All that and a whole bunch more in ONE person??????? It would be hard to make up the story of my life. Lots of operations, diagnoses, near death experiences then my body rallied and got better. Rinse and repeat a zillion times. I guess that’s why my sort-of ex-husband used to say I was more like Job than anyone he ever met. And that’s coming from a blind guy who spent more than a year in a coma. (I often wonder what ever happened to him!)

As I came through the front door of my apartment building, the people who carted off my possessions to the thrift store for me, were there. The guy was finally getting his new wheelchair. It’s like mine, only skinnier and newer. He told the tech guy my chair needed fixing. Much to my amazement and delight, the repairman quit what he was doing, and within moments, fixed 3 things wrong with my chair 🙂

He moved the headrest to the right position and secured it in the right place. That has been broken for more than a year….thanks to Rehab Medical. Then he lifted up the too short right arm and extended out the joystick so that it’s in the right place for my extra long forearm. That has never been right since I got the chair! The Rehab Medical tech said it could not be fixed…that I needed a new armrest. AND….the tech discovered why my chair won’t back up any more. There was a bare spot in the wire to the controller. It was shorting out on the chair’s metal! Wow!!!!!!!!!!

The repair tech did a quick check of my chair and found other things that need replacement and/or repair. He thought there was so much wrong with it that they might be able to get me a new chair, even though it has only been 3 years, not 5.

I called up Rehab Medical and for the first time in a long time, got the guy and not the woman at national headquarters. She has been telling me all along that the paperwork was submitted to insurance and they would call when they heard more. He said they requested a quote for the wheels, never got it and never submitted my claim to insurance. If thoughts could kill, he would be vaporized. Those jerks have done nothing all these months 😦

I called the numbers the nice tech from Medsource Mobility gave me. I talked to a few very kind and patient people, then the local guy called and emailed. For the last few days, my voice has not worked. It did not work at the doc’s or while talking to the tech. Once I got back to my apartment and sat here in the cold, with the window open and fan blowing on me, my eye undrooped and my voice started working. YES! I very much needed my voice for all these phone calls.

The Medsource guy wants me to call the Rehab Medical people and have them not send the paperwork to my insurance. Uhhhhhhhhhhh….are you kidding? At this point they can compete with each other. I just want the work done. A year after I got this power chair, insurance was supposed to reevaluate and add the tilting mechanisms that all 3 physical therapists and the doc had ordered. No matter how many times I bring that up, both insurance and Rehab Medical blew it off. And today…the company told me that they replaced my headrest a couple of years ago. I said if they charged insurance for that, it’s fraud. The fix-it guy came to just plain screw together the headrest, stripped the threads and then I was sent a bill saying they would replace it for $200+. No new parts. I went to the hardware store twice now and bought a nut and bolt and washers to gerry-rig it myself.

Do you want to know how sick of the whole thing I am? The last time I saw anyone from Rehab Medical at my house, was the day the guy fastened the almost falling off big wheels back on (May 2, 2014). Here’s the post with a pic, of when the big tires got wobbly and crooked.  Gee, they did not come fix it as promised the next day, either. It kind of made me crazy to read the next day after that.  Oooooohhhh…some good pictures 🙂 Fun day of IV antibiotics and one of my many IVIg denials. And here’s when he fixed the wheels. When I read over what I was going through in April and May 2014….it’s like the movie Groundhog Day. The same old craziness just keeps happening to me over and over and over 😦

I sure hope the diflucan works to quell the fevers, chills and extreme night sweats. Last time it made me better for just so long and it was back to IV antibiotics. Oh, here’s some torture. Lots of meds in one day.  I feel like I am at about the same place physically as I was in September last year. Yup….on and on and on and on….

Today all my skin feels thermonuclear. This morning in the doc’s office, my temperature was way below normal. And ohhhhhhhhhhhhhh……my head hurts unmercifully. I’m sure all the crying the last few days only made it worse.

My brain is all over the place. I have not cried once today. Something biochemical seems to happen to me once a month or so to take me to the depths of despair. What the heck is it? I feel normal for me, today. That’s not particularly good, but at least there’s no more tears! Not sure if it’s the diflucan, or what, but I feel like I got run over by a Mack truck. Everything hurts. It has been a struggle to breathe. I am tired, but at least so far, have no desire to sleep. It was a rough night last night. Gut distress woke me up twice. Then I had to get up early to shower, get dressed, and rest enough to get in my chair and go.

The weather has been interesting. We had pouring rain in the middle of the night. The temperature was warmer at 11 PM than it had been all day. Around 9 AM, there was some sunshine. I wore my nylon shell jacket and was too warm. When I got out of the doc’s office, I did not bother to put my coat on. What a difference an hour made! It was cold, darker and the dampness was penetrating. By the time I got back to my own apartment, it was snowing. It has been a mix of sun and clouds most of the day. Our high was 52. The forecast is more promising than I thought it was going to be. Lots of snow has fallen in the mountains the last few days. I like it when it’s nice in the valley, but I get to look up at the snow on the mountains 🙂


Olive was peacefully snoozing off her latest cat treats. And then I took pictures. Ooooops.


I got “the look”.