Guess what happened all night and today? The vibrating, buzzing and quivering of muscles/nerves to go along with the zaps. The symptoms are all marching back. That sucks  😦 I am tired of neurological problems. I sure don’t want to take any of the pills that have been prescribed for this in the past. Neurontin and Cymbalta are evil. They made me more miserable…not better. As usual, I could take steroids, but they would make my diabetes and hernia worse, among other things. The only treatment that works is IVIg….and the chance of getting it again in Utah is zero to none.

That whole nightmare was brought back to me today. The former Utah woman, who was even more mistreated than me, is going through more testing for myasthenia gravis. She has already been positive through several tests, but not always. Big duh! When MG is being correctly treated or in spontaneous remission, the muscles work better and there are probably fewer antibodies circulating around. That poor woman has been to hell and back because of the same idiot neuros I dealt with at a local hospital. Once you have MG, it does not go away. Why oh why do docs insist on doing the testing over and over? I have lots of unkind thoughts, but there is no good answer. Just like in politics…follow the money.

I am soooooooooo weak  😦 I can hardly sit upright in my chair and my eyes are mostly shut. My left arm is again painfully swollen. Today is the first time the lawn is being mowed!

Olive hissed at the guys with weed whackers as I was sliding into bed. I was too miserable and pathetic to be awake. Thank goodness I turned off my cell phone! I slept more than 4 hours. Very deep and restful sleep  🙂 I turned my phone back on and discovered the wheelchair guy had been to my doc’s a block from here, then came to my apartment. Then at 3 PM, there was a knock on my door. It was the manager. He said he had not seen me in days, the wheelchair guy had been here and they wondered if I was OK. My voice was totally broken, I could not stand and I looked like hell. He said he could see I wasn’t doing well. Ummmmm….that’s correct.

I sent an email to the wheelchair guy, but never heard back. I am too weak and icky feeling to care. My voice is gone and my eyes aren’t working well, either. I just want to sit here quietly. Actually, I rather enjoyed the very deep sleep…it was like being unconscious. I am feeling very sad and hopeless about my health challenges and a few other things.

Since the CIDP symptoms came back, I started reading the group again. I wrote: My latest flare started with extra numbness, tingling and burning that caused itching and then a week or so of hives. A bunch of people wrote back to say they have the exact same thing going on. I guess I should be grateful it’s not just me. I am also not the only one stuck with Medicaid that won’t pay for IVIg. It at least made me feel better that people who do get IVIg treatments were flabbergasted that we don’t. The world is insane when people are not worth enough to give healthcare to. Yes, we live in barbaric times. It’s a joke to call this country exemplary or #1. We might have decent hospitals and great doctors and cutting edge treatments, but only for those with privilege. People on the various support groups from countries with universal healthcare are always aghast at what the sickest and poorest of us must endure. Me, too.

hideous

One reason I felt even worse than usual is my guts. No matter what I do, they either stay stuck for days at a time, or they work too fast. This morning it felt like I was emptied out. I figured my hernia should be smaller because of that. I used the laptop to take pictures of my hernia while lying down. The camera/picture quality from the chromebook is not that great, but good enough. It was really hard to hold the laptop at the right angle and still be able to push the button for a pic. What I saw scared the beejeepers out of me. There is one particularly bad spot and several awful, but not as bad. The worst looks like an ulcer developing…the others are working on it. The problem was there are only hints of those spots in the pictures. I want to emphasize that I am flat on my back and doing nothing to puff out the hernia. It grosses me out pretty bad  😦

healing belly

Using the regular camera, I took pics of my healing belly. It has now been 1,038 days since my belly was cut open. I sure wish it would heal shut! Today there was blood on my undergarments, so I used the camera to find out why. Dang it! At least it looks more like missing skin than a new rip. The confluence of all the cut lines, has never totally grown permanent skin. One of these months…..right?

strangelumps

My scalp, forehead, jawline and face have had all sorts of lumps, bumps, scabs, rashes and sores. This morning I put clobetasol on the scalp sores. Made my hair look delightful  😛 I left it on while I slept, then took a shower when I got up. Feels better…for now, anyways. The newest, scariest skin thing is on my right cheekbone, up to the orbit of my eye. It is like nothing I have ever felt before. It’s about 3 fingers wide and 2 finger widths vertically. It feels rough on the skin but very hard and bumpy under the skin. It itches.

I am tired of being a freak of nature. Sigh…..

Advertisements