Wednesday, April 26, 2017

Ouch!!

So tired of breaking out! So tired of itching! Another vasculitis flare for the past two weeks. New bumps pop up, itch like crazy and then turn to sores. Such joy! I've been on prednisone for two weeks but only for the back pain. Hoping it would attack this vasculitis flare and remove the itch. I've learned to use hand sanitizer to kill the sting and then vaseline to seal the bump, but the sores still form. 

I hate prednisone! I've gained more weight from this horrible drug over the past twenty three years. Trouble is you can't get the weight off. If there is a pound or two drop, it is time to take prednisone again. I don't take it unless I'm suffering so badly I have no choice. It has become the go to drug from doctors. It also causes diabetes with long term use. Not worth it! Another reason I hate Prednisone is it tears my nerves apart. Every little thing makes me fall apart. One more week of this mess!


Walgreens home pharmacy called again today about my prescriptions. Same sad soul who doesn't speak up, has such a thick oriental accent you can't understand her, left a message on my machine because it was so early when they called. Had to listen to the message three times to get the phone number. Repeat of last week's message. It isn't time to fill my prescriptions. Yes, I know. That's why you put them on file and fill when due. Unfortunately, Medicare patients now don't get the option of going online to choose auto refill or keep the prescriptions on file that are not ready to be filled yet. I have to keep up with what's due and call them two weeks before. Every time I told her something, she would say, "Well, here's what happened..." but she didn't know what happened. Why can't they get more informed people or at least give the option to speak to someone else? Didn't have a comment for why I've been receiving auto refill prescriptions in the mail this week. Received two yesterday. Between the stress doctors, their office and pharmacies put on us it is a wonder how we haven't added a new category on death certificates: Death by Medical field. 

It is spring. With it comes birds, birds, birds! I took my bird feeder down a few years ago because Grackles kept overtaking it. They are scavengers. Will eat anything and everything. Then they hang around pooping on my porch. I have to hose the porch every day. They devour my dry and canned cat food bowls. It has reached the point I can't put out food until Buddy and Tom show up and most times I'm so sick and forced to stay in bed that I can't keep up with when the cats come.  I'm reordering dry food faster. This has been a bad month cost wise with dry cat food. Those birds! Will be glad when they move on to their next stop.

And I'll be so glad when I can throw the prednisone bottle away!

 


Friday, April 21, 2017

Doctor Disappointments

Doctor appointment this past Monday. Just the GP. My back problems have worsened since I've been here. I have a bad disc and spinal stenosis. Now when I stand more than five minutes my legs are totally numb from the top of my thighs to the tips of my toes. (neuropathy in both legs and feet since late 90's). Told the nurse why I was there. Said I couldn't even stand at the sink to wash dishes because my back pain and numbness was so bad.

He said, "Don't do it then."

"WHAT?"

"You know, they say if it hurts don't do it."

They gave me a form to fill out. Answer questions to see if my medication is working on  depression. Trouble is, I told him, the questions were from one extreme to another. "Are you restless, agitated or at peace?"

"Well, if you qualify for one of those things listed in each question, circle yet."

I guess it doesn't matter what extreme you are in.

He's not my favorite person to say the least. Wish I didn't have to go through him before seeing the doctor. My blood pressure when up ten points when he was done.

Doctor examined me briefly and said I would need to have an MRI. Gave me prednisone AGAIN. In Dothan they would give me a steroid shot and set up an epidural to manage the pain. I should have told this to the wallpaper because no one listened.

As I was getting my blood test, the nurse passed by and said someone would call for the MRI, but they didn't know where or who.

This morning I called the doctor's office. Told them I never heard anything about the MRI. It had been five days. They told me it would take two weeks to see if my insurance would cover it.In other words,  I just have to suffer.

Thank you Obamacare for screwing up MRIs.

Went to a play at Asbury last night. They did "The Glass Menagerie." It hurts to sit, or lie down, or stand for long periods of time. So I finally remembered to take my back pillow for support. Pain was still bad, but I wanted to get out and go somewhere that didn't involve doctors. Just have to start taking that pillow with me even though it flattens so badly after a couple of hours of use.

If anyone has a suggestion for a pillow for spinal support, I'm all ears!!

Won't have another doctor's appointment until May 1st. So happy to have a short reprieve.

Easter Reminder

This past Sunday was Easter Sunday. Reminder of salvation through a risen Savior.

I started throwing up Saturday night. Two hours later I was sick as could be. Didn't get to go anywhere Sunday. My next door neighbors had so many family members show up they had to park in my driveway. Just a reminder of how alone I am in this world. My best friend put flowers on my family's graves. So beautiful! I miss them so much. I miss being able to put flowers out.

I asked,  "Wouldn't it be exciting to be standing in a graveyard when Jesus comes back? The Dead in Christ rise first..." Now she'll remember that comment every time she goes to put out flowers for me.

The graves surrounding my parents and only brother are my mother's family. Sad to see so many headstones with no flowers. There are four markers with my family. Mine is beside my brother's grave.

IF you have family, I hope you spent it with them. When they're gone, they're gone from this earth. The ache of missing them is overwhelming.





Friday, April 14, 2017

Eye Surgery

Next cataract surgery is June 7th. Until then I have to get the dry eye from lupus under control. Add another eye drop prescription to the list! When she checked me out yesterday my eyes were so dry the dye showed a desert floor! All kinds of lines!

Although I can't see well out of the left eye, the pressure came down. So the right eye is next. Will be so glad when it is over!

This week started with Benlysta. For three days I was wiped out and in pain. Yesterday I felt great. Today I'm back to horrible pain in arms, legs, and back. Temperatures are going up and I'm doing my best not to turn on the air. A fan works wonders right now. Even so I woke up freezing this morning. Just wish I could go twenty-four hours without pain. Weather yo yo is still affecting me.
Two doctor appointments next week and a break until May 1st.

Have a wonderful Easter. If you have family spend it with them!

Wednesday, April 5, 2017

Doctor Days Ahead

I must say it was so nice not getting up to go to doctor appointments. But now the doctor and hospital trips start again on Monday. 

Benlysta IV is Monday. Still finding myself drained and in more pain by the third week. It is as if I've run out of gas. Feel like I'm moving on fumes. Can't really tell if this stuff is working or not. Then again if I stopped treatment now I'd probably feel the more intense pain just like I did when I ran out of one medication and had to wait two weeks for the doctor's office to refill it. I'm sure it is doing more good than I can tell. If you want to know more about it, go here:  https://www.drugs.com/benlysta.html

Eye doctor is next Thursday. She's going to check on the healing of my eye from surgery and then set a time for the next cataract removal of the right eye. I still see in blurred vision from the left eye. Had hoped there would have been improvement, but glaucoma is also working against me along with plaquenil still in my system. I can tell the cataract is still growing. 

The following week is the MD. Not much of an exam there since they always depend on the rheumatologist to do the most care. Mostly check in, get prescriptions, and record keeping. Wish there were more. 

Weather takes its toll on lupus sufferers. This week is no exception. High temperatures, bad rain storms and possible snow from extreme drop in temperatures by the end of the week. Most of the time change in weather puts me in bed for days or weeks. It's hard when you're doing this alone. 

Would appreciate your prayers and support. Crazy medical bills still coming in. Found out a week ago one of my meds is not covered through insurance anymore. Cost an unexpected $77 dollars. 

Wishing you a wonderful spring.