This morning I went to the senior center to sign up for things. I signed up to get a membership card, to get my power chair checked out, to see a caseworker and to talk to a lawyer. The receptionist told me how to apply for Meals On Wheels and gave me a 55+ senior resource directory. I went into the cafeteria to check out their “continental breakfast”. Yuck. Sweet rolls, coffee cakes and two kinds of dry cereals. A diabetic nightmare…..besides being disgusting. I have never been a cereal eater and I loathe grocery store sweet rolls. Just looking at them made me queasy. Gobs of frosting. Ick.

So I came home and called Meals On Wheels. At first the woman was really rude to me. After a couple of sentences, she said I was not eligible because I am not totally homebound. The paper thin guy who gets MoW has TWO cars and drives! He can walk, he does stuff. She said the rules have changed and I don’t qualify. Then she started asking me questions. Suddenly I was signed up for MoW and start getting lunches on Thursday. After 2 weeks, a social worker will come to my house to assess me and see if I can continue to get MoW and if I am eligible for other services. They ask for a “donation” of $2.50 per meal. I hope they don’t really expect much. My SNAP gives me $2.93 for a whole day of food!

Then I called Paratransit and arranged rides to and from my internist on Wednesday. I made an appointment online! First time I ever saw that option offered. That’s way better for me since my voice is hard to understand.  Yes…..lots of fun trying to be understood for those 2 calls this morning 😦 I don’t have enough air to talk to begin with, it wipes me out to repeat things. The woman at the senior center struggled to make sense of my words, too. Sigh…..

faintbutterfly

Whaaaaaa!!!! I didn’t realize my mouth was drooped. That eye has been closing off and on all day. I don’t look very red after being flashed by the camera…..but I am.

I was only at the senior center for about half an hour, and it made me feel sick. They have very powerful fluorescent lights. My face has been burning hot ever since. Bummer! It’s going to be challenging to go there for events. I will have to drag out my lupus hat to make it somewhat better. Fluorescent lights are evil 😦

horror

This morning I tried taking pics of my hernia from the side. No wonder people use selfie sticks and front facing cameras! To the left of the middle smooth scar, I can flatten my belly. To the right, it’s swollen tight and I can’t make a dent in it. This is showing the gigantic right sided hernia. I feel physically ill after looking at it. It’s way bigger and more lumpy from intestines than I thought. I need someone to take my pic so there is perspective. This is bigger than any pregnancy I ever saw 😦 My skin is ripping. The lightest spot is a whole new basketball popping out the side. I look like a bag full of basketballs….like we used to lug out of the locker room in high school.

Can I live through this???? It gets MUCH bigger each day. The more I stand up to do things, the bigger it gets. Same with coughing or using those muscles in any way. It hurts my back something fierce. I am beyond waddling. Amazingly, if I put both hands on the hernia, and apply firm, steady pressure, much of the hernia goes back inside. If there’s empty space in there, why are my intestines trying to move to another county?

A surgeon says this woman has the biggest hernia he has ever seen. He should see me 😦

Geeze! I just endured 2 long calls from the internist’s clinic and nurse. Online, when the form asked why I wanted an appointment, I said my belly was ripping and I am short of breath and weak. I forgot that saying I am SOB causes alarm with some folks and not others. The nurse asked about my edema and coughing, so they must all go together. I was in tears from trying so hard to talk. I don’t have enough air to talk!!!!!!

The nurse asked me to use my pulse-ox. Without talking it was 74. As soon as I talked, it went up to 90…..exactly like last time I went to the ER and no one cared. I don’t know why MG is so opposite, but my oxygen saturation always goes up when I talk, then back down when I relax.

I looked up my symptoms. No wonder the nurse was freaked. She wanted me to go to the ER. I just laughed.  Symptoms of low blood oxygen levels include shortness of breath, fast heart rates, sweating, wheezing, mental confusion, coughing and changes in the color of the skin that can range from cherry red to blue. When these symptoms are experienced by any individual, WebMD recommends calling 911 emergency services immediately. At different times of the day, parts of my fingers have been very red, and under my fingernails have been blue or purple. My heart rate is about 25 over my normal. When I first get in bed at night, I usually watch a few short videos on my chromebook. I wheeze so loud that Olive runs from the other room to see what’s up. Yesterday or the day before, I had a whole conversation with her using the wheezes to talk. She didn’t like it.

These symptoms started for me before Thanksgiving. That’s part of the reason I went to the ER back then. The hospital neuro was more interested in telling me I have conversion disorder or functional limb weakness, than caring about what was wrong. Look how MG and FLW have the same face symptoms! The machines went nuts from my oxygen sats, varieties of heart beats and heart rate changes. The doctors? Never addressed it. I can not win. They are mad if I minimize and ignore, and mad if I try to get help 😦

It was actually funny talking to the nurse. It was obvious she knows nothing about myasthenia gravis (or my history in Utah) and had no idea what IVIg was. I told her everything wrong would get better if I had an IVIg infusion, but the insurance company would not pay. She said she would try to set it up! It was too tough to keep talking. I did not bother to set her straight. Snicker…..

That’s enough excitement for today.

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