Wednesday, May 17, 2017

Temps and Sores

Every time the temperatures go up, I break out with a vasculitis flare. The tiny bumps turn to horrible and painful sores. When I think the flare has subsided, I find more. This morning there were ten more tiny bumps just waiting to turn to horrible sores. 

Lupus is a painful disease. I hate it!



Thursday, May 11, 2017

Added Another Doctor

Had an MRI done last Friday. Bad degenerative disc and pinched nerve added to the list. So they're sending me to a surgeon. My back has really hurt the past few months. I can barely stand five minutes without the pain overwhelming me. The appointment is June 12th. Hope he can do something to alleviate the pain. 

On wheels now. Not car wheels. Rollator wheels. It is a walker with a seat. Although part of me is sad I've reached this stage, I'm so thankful to have it. I can sit on it to wash dishes. Can sit down whenever I go anywhere that requires standing. One day I'll graduate to a motorized wheelchair. I hope.

With so many doctor's appointments the cost of gas has risen for me. This month alone I've had six appointments (one more on Monday). At $10 a trip, I've spent $60 just on gas. Also with doctors adding more prescriptions to my already bulging list it has become so expensive just to fill a prescription. I'm thankful for Medicare Part D. Without it I couldn't buy my medication. I'm up to eighteen prescriptions now. Yes, taken every day. I'm just feeling overwhelmed. Sometimes I think it just isn't worth the fight anymore. As this disease progresses over the years it brings with it more and more damage that is irreversible. I'm simply worn out.

The Retina Specialist informed me that I would have to see him for the next five years. Turns out Plaquenil not only damages the back of the retina, it also stores in the system and continues to do damage until it is out of your system. Since I had to take it for lupus for twenty-two years, I will now be fighting the damage of this drug in my eyes. I also found out my retina is starting to thin which also could cause macular degeneration. I guess it will be happy to join dry eye from lupus, glaucoma and vision loss. Top it off with another cataract surgery.

When I received my insurance update for the past few months in doctor visits, I saw where it cost over $7,000 to remove one cataract. The Benlysta I get by IV every month cost $17,000 per visit. If Congress wants to make a difference in our lives, they should regulate pharmaceutical costs. They're making a killing while killing us in the process. 

I am a big believer in the power of prayer. Would appreciate your prayers. And for the person who tried to post something against my beliefs, give it up. You're not getting free advertising on my page. 

Can't believe June will be here before we know it. To me the only thing about days and months reflect back to doctor/hospital appointments on the calendar. I'm so tired and worn out from going to the doctor, going for tests, and going to get Benlysta. If I have to do two appointments in a row, I'm down for the count. Just cannot function. It has been a rough few months. 


Wednesday, May 3, 2017

Welcome To My World

Monday I saw my rheumatologist. I remembered to ask her for WRITTEN prescriptions this time. Just too much stress chasing them down and doing without until her office decides to fill them again. She was concerned about all the sores scattered from head to toe. I'm having a vasculitis attack. Tiny bumps appear, itch like crazy then morph into huge sores. Thing is my local doctor gave me a prednisone prescription (high dose) to help with the chronic back issues I was having. The prednisone didn't even tough the vasculitis this time. All it did was make me gain three more pounds. I hate prednisone! 

She wasn't too concerned. I left with no other prescription to counter attack this mess.

I asked her about getting a rollator, walker/chair. I can only stand five minutes before giving out now. My back issues have grown worse over the past five years. So she wrote a prescription and we found a local place that dealt with medical supplies. Problem was she only wrote rollator balance on the prescription. Has to be more detailed than this for Medicare to cover it. Now I'm in a holding pattern until that office decides to fax another prescription for it. I just can't seem to win. Already approved by insurance. Slow slug doctor's office causes more problems.

I've reached the fever stage of the vasculitis flare. Cold/hot flashes. Very painful. Sometimes I just think it isn't worth the stress. Life is hard enough without dealing with this mess.

So tomorrow I see the Retina specialist to see where the plaquenil is in my eye damage and if any is left in my body. Waste of time I think, but eye doctor insists. Monday I go for Benlysta IV. The following Monday I have to go back to Lexington for a body scan to see if the osteoporosis has returned and to check for any stress fractures. All of this costs gas money and boy has it been expensive lately.

I'm sick and tired of being a professional patient!!

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!