Today was another round and round day with healthcare. I had to go to my doc’s office twice….and he wasn’t even there today. The first time I had to go get the pre-meds for my CT scan. I need to take 50 mg of prenisone at 3 set intervals before the dye hits my blood. An hour before, I am supposed to take 50 mg of Benadryl. The second time I wheeled over to the doc’s office a block away, the secretary faxed paperwork to Paratransit for my (hopefully!) unrestricted use.

But…..even though the nurse keeps calling with one issue after another, the hospital STILL hasn’t called with an appointment. The doc wanted this done yesterday 😮 I keep going from awful to OK. It’s bizarre. My temperature spikes, I feel awful, then it goes to normal. My eyes are drooped like crazy….and then they fly open. My voice gets as bad as it has ever been….and then it sounds good!

I was talking to my friend Gordon and my eyes were just about closed. I started messing around, showing all the ways I can do things to my eyes or neck to make my voice normal. Each time I lift my lid, bend my neck, cover my eye, my voice only gets better whle I am doing that, then goes right back to broken. He said something about putting ice on my eye. I was wearing my wet cooling bandana and pressed it into my eye to cool it off. Just like snapping a finger, my voice started working…..but it STAYED working!!! From that moment on, my eyes quit drooping and my voice worked.

I can’t be the only person in the whole world who this happens to! Now that I know about my phrenic nerve and breathing causing my shoulder to hurt…..is there some nerve that affects both my eye and my voice??? I wish I had a smart person to ask. I think it’s an important clue with my weird neurological problems.

Tonight there was a knock on my door as I was cutting up a tomato and an avocado for supper. It was my hyper neighbor bringing a book for me to read. “Proof of Heaven…A Neurosurgeon’s Journey Into the Afterlife” by Eben Alexander, MD. Good timing.

The bad timing was I had already stood up long enough to dice the tomato and avocado….and that’s about the limit of my ability. I asked her to come in and sit down. She said no 😦 She then went on to want my phone#, to talk, to gossip, to joke around. I was making horrible faces and trying to shift around my weight while doubled over the counter. Soon I was in so much pain that I started to faint. She finally left, but insisted she was going to call me in 15 minutes to make sure I was OK. Me and the walker made it back to my not so comfy chair, but the damage had been done. Honest….I really like this woman!

I still felt faint, my eyes could not focus, my ears were ringing and then the leg/hip/thigh cramps started…..the kind of cramps that make me scream and writhe 😦 I haven’t had that happen in a long time. And now my open belly wound, the bottom of where my belly stitches were, my lower back and the entire hernia are in EXTREME pain. My head and neck might be even worse than my abdomen. All because I did not just go sit down because she said no. I am such an idiot! I need to put me first.

I was afraid to look when I peed. I was right. The strain has got me bleeding again. My arms and legs are covered in lumpy muscle knots 😮 I feel wicked bad sick 😦 By the time my neighbor called, my voice was about the worst it had ever been. It’s always bad news to be weak on top of weakness on top of an infection.

No one ever called with the CT appointment! I took pics of my split belly, the hernia and the infected wound earlier today. It smells very sickly sweet. Of course it does! As usual, if it’s a night, weekend, holiday…..that’s when I always get the worst. My fever is 102. This is the first time it has been that high…or stayed high for hours. I have been having rapidly cycling fever/chills. I am still quite SOB. All evening my diaphragm catches and gets stuck for a few moments. Totally wicked bad scary 😦

Advertisements