Friday, May 29, 2015

A LONG Week!

It has been a long week. Have sores all over my body. My rheumatologist from AL ruled out several things it could be and diagnosed it as vasculitis. He sent me to another doctor who did a biopsy and ran other tests. I think I trust his judgment more.

My current rheumatologist told me it was a staph infection - MRSA. She also said she wasn't going to treat it but it looked infected. In other words if it had not been infected, I would have to just suffer with the outbreak.  She put me on strong antibiotics. No test of any kind. Just looked at it.

Looks like four weeks of antibiotics now. When I opened the bottle yesterday, I saw that it was the huge horse pills instead of the caplets. I have a hard time swallowing those things let alone digesting them. What is suppose to make me better has made me sick to my stomach.

As of today I am still breaking out, itching, and applying neosporine to the sores.

I've had a bad lupus flare this past month. So hard to function. Wiped out so badly I feel like a wrung out dish rag - the one symptom of a flare that is pretty much untreatable. Just have to ride it out. My doctor told me to "exercise" so that I would not feel wrung out. Really? I know exercise is good for lupus, but not during a flare. She gave me the name of a yoga for arthritis dvd for me to buy. Funny - I can't afford to buy food let alone a DVD.

I gained more info from her nurse than the doctor yesterday. So thankful she has a new one.

My kitties are shedding. Welcome to pre-summer! Hair balls everywhere. Washing and scrubbing the floor. Just one of those weeks. Rascal is the worst. When he leaves his gift on my bed, he comes in the living room to confess to me. Wish he could clean it up, too.

Just pushed the vacuum cleaner around and I almost blacked out. Had to sit down several times before I was done.

I have so much to do inside my place. There's a can full of paper to shred, things to toss, items to prepare for a yard sale. And no strength to do any of it! For now I'll have to wash clothes and linens. Amazing how much it accumulates when you put it off a couple of weeks.

I am so thankful the end of May has come. Money is at a minimum, food is extremely low and June 3rd is just around the corner. Thanks to a dear friend the cats are covered. As for me, well, I just finished the last of the eggs.

Just a few more days until I can buy food. Why does medication have to cost so much???

Saturday, May 23, 2015

Still Sick!

I'm still sick! High blood pressure incident caused a lupus flare (which is typical of any kind of physical or emotional stress). My joints have been so swollen. I've run fever. Have a vasculitis outbreak. The bumps are so itchy and look horrible.

So tired of suffering from this horrible disease. Now with the heat setting in for summer, I will be once again housebound. 

Looks like I'll be anchored here for another summer. It costs a great deal of money to move and I barely have $150. I long to go home. I can't physically bear another winter in KY. It just physically hurts too much. And doing this alone is horrible. 

I need to be close to medical care. Need to be within a few minutes of an ambulance, ER, doctor. I'm not here. My experience with doctors here has been interesting to say the least. I feel as though I've received just that - minimal care. I can't breathe well. I can't function enough to go to the grocery store. I can't take care of day to day things anymore. 

I not only want to go back home, I NEED to go. It will take a miracle to get me there. A UHAUL is not an option this time around because there is no one to drive it. I'll have to get a mover. 

Every day I pray for a miracle. A breakthrough. I still believe in God's miracles and His power far exceeds my ability. I'm in His hands and wait.  

Saturday, May 16, 2015

Crazy Week

Had a doctor's appointment this week. My blood pressure was so high, they wouldn't let me go home for awhile. Odd occurrence for me. It is usually 120/80 - the one thing that works! At the appointment, it was 190 over something. I knew I felt bad that day, drained, dizzy, etc., but just got up and pushed myself on. I had three choices: stay at the office, go to the hospital or go home and crawl into bed. I chose home to bed.

Suffering from Systemic lupus does not mean I will die from it. Death comes from heart attacks, strokes, kidney failure. One thing my former rheumatologist told me was to keep my stress level low and watch my blood pressure. Having an aortic thoracic aneurysm sitting next to my heart is another reason to keep it low. Sometimes stress happens. Sometimes blood pressure just soars.

Add to the stress when someone on facebook stole my page or copied it and started one under my name. I was bombarded with emails and posts telling me to change my password. I did and also turned in the fake person. The page disappeared, but not until damage was done to my friend's list. My blood pressure was soaring.

One good thing came out of that experience. An old friend from high school called me later that night. I hadn't talked to him in many years. He was concerned about what happened on facebook and wanted to let me know in case someone else had not. We talked for awhile and I was thankful he had my back. We talked about many things including my illness. When he said he was sorry, I merely told him doctors said I would live ten years and it has been twenty. He said, "That's not much to celebrate when you're suffering." He had a point. My daddy always said "better than the alternative." Sometimes I wonder.

I'm still feeling stressed. Still dizzy and drained. Like I've said many times before, just take it one day at a time.

Tuesday, May 5, 2015

Back To Pain and Suffering

If you've ever had a toothache, you know how bad it feels. Magnify it 100 times and you will know how bad mine feels right now! The infection has returned and moved into the upper jaw and back into my right ear. Unlike many people, I don't have insurance coverage to see a dentist. So I suffer. I bathe my mouth in Anbesol and suck on ice (both of which numbs the pain for awhile). But the infection remains.

I've been obsessive with caring for my teeth, but lupus also damages the mouth as well as other areas of the body. It along with the medications involved in treating the disease also dry out and decay the teeth causing more dental issues and diseases.

I'm suffering. I'm so tired of suffering. I can barely walk across the floor, sit on the shower chair to take a bath, do simple things anymore. I found out getting assistance for someone coming in to help is out of the question unless I pay $157 a month for it. Of course that is out of the question when it takes every penny just to get through the month. I explained to the lady on the other end of the phone I had this service in Alabama when my health plummeted as badly as it has now and never had to pay for it. She said it was just a difference in the two states.

I was a fool to move to KY. I would give anything to go back home where I could be cared for again without a huge weight of stress bearing down on my body and mind 24/7. Live and learn.

I've always been a top notch student of the school of hard knocks. I've learned the hard way. Problem is learning now does me no good without a solution.

So my heart, mind and soul turns to God in prayer for He has always cared for me when people have not. Please, Lord, open doors.