Beep's Purple Blog

I did sleep and a lot of the painful fibromyaglia symptoms are much better. Fibro patients really need good sleep every night.

This completely rules out my living on the street or in my car, so I really wonder just when it will be noticed by somebody who cares that disability payments are now no longer enough for food, clothing, shelter, and medical copays and OTC-but-doc-says-to-take stuff. Never mind transportation or any hope of not getting depressed due to dire poverty. The Libertarians would just let me did and so would the Republicans which is why it looks like I am just stuck with the Dems.

Anyway, I did have nasty killer joint pain and a migraine starting when I woke, and also severe dangerous suicidal depression. I wrote some emails in this state that I might not be forgiven for.

When I took my pain med and it started to work, the depression improved somewhat as the pain became controlled.

However, I still had severe muscle weakness and fatigue. I was a bit scared about driving the 75 miles to my thyroid doc today. I kept the appt. because he is a really nice doc that works in a clinic where they have a terrible time with rescheduling.

On the way there, I became very tired and then had a cluster of really weird symptoms. My eyes seemed to be having muscle spasms and it was very hard to see the road. I had spasms in my arms and legs and back. Unfortunately, also my bladder, and I soaked my clothing. So humiliating.

Once I got there I had to take off my dripping pants and undies but my top was not long enough to completely cover me. I walked in pulling the top down and stretching the fabric but I was too weak to continue this indefinitely. I explained the situation and asked if I could please wait inside the door where the patient rooms are rather than out onstage in the huge lobby. Believe it or not, I had to WAIT to get PERMISSION for this. I wanted to die right there.

Once I got in the nurse there was helpful.I ended up taking my top off and wearing two hospital gowns (one for the front and one for the back)! My thyroid news is good; I seem to be stable. I do need an MRI to check my pituitary tumor again (routine) and to check out my symptoms from a recent head injury. Mom found the $300 copay for the last one to be a hardship so I'm not sure what to do. I'll have to solve this one when I'm feeling better; not now.

I was still really weak and tired but since all the spasms went away to wherever it is they hang out, I did pick up Don and we came home. It is finally fresh strawberry season and we got some. I've had no food and am having trouble getting out of bed so I think I need to ask for some food.

Mom called; she is so worried about me driving to and from LA tomorrow. I know I shouldn't do it. It's a hard drive even when I'm well. Someone her age who is afraid of traffic shouldn't be the one volunteering to take me. I really do need more friends. But when I got up from the bed I had to sit right back down again. I have been thinking really weird lupus flare all along but now I got some news from mom: little Gracie has fifth disease. I'm immunosuppressed and spent the weekend playing with her. The early symptoms are low grade fever, headache, mild stuffy nose. I have all three. If I have it these symptoms will go away and then I will get a red rash on my face. How I will tell it from the regular lupus rash I am not sure! Wish I felt well enough to look on the net for fifth disease pix but I keep falling asleep; I am exhausted.

So if my lupus blood work is fine maybe I've had effexor withdrawal and the early stages of fifth disease?

Whatever it is, I want to go to bed and sleep, sleep, sleep now that I can do so thanks to Ambien. I am so tired just making myself drink some water seems like a lot of work.

I'm going to have to take poor Mom up on her offer. Don and I will take a pricey cab to the bus at 6 am; it leaves at 6:30 and arrives in Goleta 8-ish. I'll wait at the cafe next to the office where Don works. Mom will pick me up there. She will arrange to stay with a friend in north county tomorrow night so that once she drives me home she doesn't have to go all the way back. Now I won't have to risk crashing the car if I just pass out.

You can see why Mother's Day is a big deal for me. I don't know what I will do when someday she passes on; I pray she will live to at least 110 years...! Our family isn't that long-lived so I really need a miracle here.

Depression is whispering in my ear that I don't have many friends because so many ppl in the Santa Barbara area (some former coworkers, health professionals, friends from childhood) have all shunned me and I will never make a lot of friends there.

I am telling Depression to STFU. I don't have the energy for abject misery. I just want rest and peace and hope that someday I will value, be valued (and also feel valued) by many people.

Mom, I love you.