Thursday, October 25, 2012

OUCH!!

Yes, another flare! I've been in bed since Monday. Now Thursday. When I enjoy life, I pay for it physically. Flares set in. High fevers, swollen joints, extreme pain, extreme fatigue. Bad bad week. So tired of this.

Still haven't found another internal medicine doctor. Harder than I thought. Of course, the one back home just wiped her hands of me as soon as I left. My aneurysm doctor did the same. Spent a week waiting for them to call back with some sort of reference on where to go in Lexington. Was told to "google" a name and pick a doctor. What a great concern they have. In the mean time I have an aneurysm in my chest next to my heart. Never mind it is a ticking bomb. 

So I'm praying for God to open that door. I can't seem to find one. My other doctors are useless. I should have gone to God for help in the first place. When will I ever learn? Praying for Him to open the doors and guide me for direction.

Changed meds this week. Pain med isn't strong enough without the ultram. Didn't realize how much that small pill actually worked. So it is back to the ultram with the new pain med. I can't stand this horrible pain.

Still the same here as it was in AL -  when I'm sick, I'm alone. No one to help when I'm in bed or down. I'm thankful for the change of surroundings, but sometimes I wish I had someone in my life, especially when I'm sick. Would be wonderful not to be alone all of the time. 

It cost a lot of money to move here. My funds are depleted. Praying for a financial miracle, too. Otherwise those meds will be cut even more.

Tuesday, October 9, 2012

Sick again...

I am sick again. Weather changed. I pushed myself too hard. I am sick again. Fever of 102. Joints hurt. Can barely breathe. Yes, lupus is active again. My system is weak. Been in bed for two days. Missed Water Aerobics and Bible study. Just have to stop pushing myself. Even though I want so badly to do something every day, my body won't let me. I can't physically keep up. My mind says, "Let's do this and this and this"....but my body gets weak and sick. And now I sit up in bed or in this chair wishing I felt better. 

When I am weak, I also feel emotionally bad. I start feeling bad because there is no one here to help me. No one I can rely on to get a drink for me. No one to bring something to eat. I pulled myself out of bed today to feed the cat and make a sandwich. This disease is so controlling. When it hits, I just stop, close my eyes and pray for better days to come.

Can't blame others for not understanding. Unless you deal with a chronic illness, you'll never understand. It isn't like the flu or a cold. It doesn't go away. You have it forever. The symptoms get better, you go on, then they flare. You live each day one at a time. It does make me angry though when people don't listen enough to try to understand I'm in pain and need help. I think Christians can be the worst. They "pray" for you, which is wonderful. I need the prayer. But I also need the physical help, the encouragement, the volunteer to run to the grocery store or keep me company. I still have not committed to a church here. One reason is because of the bad experiences I've had back in AL. Other reason is because I can't walk the distance to either church I've visited. Another is because I don't want to go to a church where I don't feel God's love past the front door on Sunday. 

So Rascal and I keep each other company. He's been more of a constant friend over the years. He knows when I'm sick. Stays close to me. Never talks behind my back. Never judges me. Loves me unconditionally. He listens. 

I'm ready to be over this flare. I see a new doctor on Thursday. Hoping he will be a good one. I'm tired.

Thursday, October 4, 2012

With Change....

When you start over in a new place, there are always complications. With me it has been financial. Medicare now takes out extra money from my income because I'm not being covered with extra help. I changed states and had to start over. It takes several months once approved. So for several months I have to function with $100 less in my budget. So the cuts come in food and medication costs. Those are the only flexible areas. 

Today they took out $200. They said "back coverage." Gave me a few weeks notice. Have to live on $200 cuts this month. 

With any move, you have to weigh the good and bad. With the environment I was living in, no, existing in before, this is worth the change. I will live on ramen noodles, peanut butter sandwiches and whatever else I can. I will cut back on meds where I can until the coverage is cleared. 

I'm thankful to be where I am now. There are people here who have opened their arms and taken me in. I feel cared for and respected.

With a chronic, horrible disease like lupus, you need all the love and care you can get. Yes, it was worth every chance I took. I'll count pennies. I'll do the best I can. I'm alive again and thankful for every breath.