How do you do it?

I have had several people ask me "how do you do it?" And now they have started asking Mike. So, I thought I'd try to explain it here.

I have Lupus, osteo arthritis, rheumatoid arthritis and several other health issues. Lupus and the arthritis are the ones that affect (or bother) me the most. I have pain and fatigue nearly everyday. But, I don't want to just sit back and wait to die. Who would? I exercise in the pool at the YMCA 3 times a week. The water helps a lot to keep moving and sorta flexible.

The main thing is God keeps me going. He encourages me and comforts me. He has also given me common sense and some pretty good doctors. The doctors then give me the medicines I need to cope with my diseases. Remember, there is no cure for Lupus.

I am in a study for a new medicine for the Lupus that really helps. I get it every four weeks. The med only works for 3 weeks. The week in between? Well, let's just say I try to not do anything. I sleep a lot those days and take a lot of pain meds. We are hoping the study med will be approved by the FDA soon and that I will be able to get it thru Medicare or the manufacturer. And to get the infusion every 3 weeks instead of 4.

Remember, God gave me common sense too. I know when I am "DONE" for the day. Mike knows if I tell him I am done, then that is all I can do. I might as well have a seat or go to bed. The common sense comes in to know when you are reaching your limits and either slow down or stop. What good will you be to the rest of your family or yourself if you over do it? I know what I need help with as well. So, I am no longer afraid or embarrassed to ask for help.

How do I do it? I have a loving God, a wonderful and supportive husband, good doctors, good meds and common sense.

Hope this has helped.

Doctors and more doctors and tests and more tests

Good grief. One doctor after another. I see a doctor on the average of 2 per week. I get poked, prodded, squished, xrayed, and so on. Some appointments are good. Like my infusion...I am happy to go get that one. It makes me feel good, well better, for 3 weeks. The forth week, let's just say don't leave home without lortabs. For that matter, don't stay home without lortabs!
Lately, I have had 3 biopsies and one culture done. All 4 tests have come back negative for whatever...negative mostly for infection. But...something is wrong. It's just that no one knows what it is! If you don't know what it is, how can you treat it?

I was given a steroid cream to use on a rash, actually 3 different ones. All three rash locations were different, yet something the same. The tests showed no fungus, no infection, nothing. So, the steroid cream didn't work. Then it was the anti-fungal cream. Still not working. Then the anti-fungal pill...may be working. But I am not sure on that one.

So, what in the world is going on with my body?

Earlier this week I had a stress test. First they said, chemical and not a treadmill. I get there and they decide the treadmill. I am leery about this. I know my limitations. But, I did make it through...barely. Then today, the dreaded mammogram. Strip from the waist up and put this sheet over your shoulders. Then walk down the hall to the exam room. Then throw the sheet over your shoulder to expose yourself. Then has the tech adjust the machine to just the right height. You need to stand in an awkward position, and she manually lifts one breast to the lower platform of the machine. Holds it there while lowering the top platform until you are compressed completely. Then she runs and hides behind the safety glass, tells you to hold your breath until the machine is done taking your picture. Afterward, she lets you stand there until she is sure the photo is clear. Then, she turns you, positions the other breast on the wretched machine, lowers the compression plate, then takes her position as the machine again takes your picture. All done! NO! The machine is then set to a 45* angle and you start over with each side. Only this time the machine hangs up on my IV port! Stop, reposition, start again.
I despise this test! I know it has it's place, but not for me! The other exam is next month. It is also humiliating.

I wanted my husband to go with me today, because I wanted him to see what I had to go through so he would understand why I hated it. "Big deal, it's just an xray!" But he was too busy. Rather convienent I think. So, I am going to find a vice and 2 plates, one metal and the other acryllic. Just like mine were. Then I am going carefully place his parts in the vice and snap a few pictures...of his contorted face!

I will insist on the next one though. He thinks it is terrible to have a prostate exam 2-3 times in his life. Poor baby. What does he think we women go through every year, and then multiple times when pregnant?!

Don't get me wrong. I love my husband dearly! We have been married 32 years. But, he needs to really understand a few things. I think I have been patient long enough. Time for him to see what I do to try to stay healthy for him.

My Parents

Wow, where do I begin? Two weeks ago tomorrow, I took mom to get cataract surgery. While they were prepping her, she had a heart attack. I sat and watched as the nurses were all working with her. It was a mild one with minimal damage, but still very scarey. I stayed with her most of the daytime that she was in the hospital. Dad was in daycare, so that really helped.
Until Saturday when he got hostile toward the staff there. Mike was picking up Dad and staying with him until I got home. Then we stayed the night with him while Mom was in the hospital.
Dad has severe dementia. He was very confused when Mom didn't come home nights. She was finally released on Sunday. We took her home and stayed with them one more night to be sure they would be ok. The next day, Monday, Dad went to daycare again.
Then Tuesday morning he became violent again. At this point he has hurt 4 staff members by pushing, hitting or scratching them. My son, Ben, and I took Dad to the hospital in the ER.
They finally, after 13 hours, admitted him. He is still there.
Yesterday we had a conference with his medical team. Then we were allowed to see him outside regular visiting hours. I went to hold his hand but he became extremely protective of it. We mentioned it to the team as they were still there. They did seem concerned, but not exceptionally so. They took xrays and found his humerous bone, upper arm, was broken. An Orthopedic doctor is to check him today to see if surgery is required.
He was to go home tomorrow, but now that is changed.
This has been quite an experience and very stressful!

A good weekend

This was a really good weekend. My show did fair. I sold a few things here and there. Church was great! Had loads of people that haven't been in a while. The children's classes were overflowing! The weather was cold but clear. The moon was high a bright and BIG.

I went to the Dermatologist today. He said my skin is so much better that he reduced that particular med by half! One less pill to take daily. Yea!
Next week I think I have two doctor appointments. One, I don't think will be so pleasant. Ugh. But, I shall live through it.

We finished our Beth Moore study, "Jesus, the One and Only" tonight. It is an inspiring, awesome study. We are going to take a break this next month and start a new study in January. I don't know what yet.

Made some tortilla soup tonight. Good stuff. Added some corn and taco meat to the mix to make it even better. I'm thinking it will be gone soon!

Stay tuned. I will post more jewelry photos soon. Maybe in a day or two. If I can get a clear picture of my Black Diamonds, I will post it.