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!!