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.

What is Lupus?

I was diagnosed with Lupus about 15 years ago. As I look back, I can see symptoms a lot farther. Lupus is a strange and complex 'disease'. About 20 years ago I had a doctor say in passing that I was 'allergic to myself'. I laughed even though it sounded very accurate.

In the beginning, I felt really sorry that I just couldn't do things like usual. I think my poor husband thought I was being lazy. I know other folks did. It isn't that I didn't want to do things, but that I didn't have the energy to do them. Even simple things like doing the dishes or the floors. There was pain to deal with too. But there weren't any reasons for the pain. At least not that we could find. I could be standing in the kitchen decorating a cake and just start hurting. I thought at first it was the height of the counter top. I am a little on the short side, so that made sense. Then I thought it could be the kind of shoes I wore (and more likely just being barefoot). But the pain would be enough to make me go sit for a while. We only had 3 children at that time and the youngest was just a baby. I think this was close to the beginning of my Lupus symptoms.

Lupus is an auto-immune disease. It is not to be confused with AIDS which is an auto-immune deficiency. There is a big difference. You will have to look it up.

For me, lupus is inflammation everywhere! Inflammation internally and externally. My skin is affected by the lupus. I have to be very careful of sun exposure. It can cause extreme burns and burn-like conditions within just a few minutes. I wear sunscreen with an SPF of 75. I also wear sunglasses, long sleeves, gloves and hats. The inflammation is in my organs, joints and skin. I have had several biopsies for whatever reason. They all show chronic inflammation. The biopsies may or may not show anything else. With Lupus I am more susceptible to illnesses, particularly lung problems. My immune system is compromised. It takes twice as long or more to heal even for simple things as scratches.

Lupus in general is a disease where your antibodies see normal tissue and normal cells as foreign. The antibodies are designed to attack anything foreign in the body. So, when the antibodies get confused and see normal tissue as foreign, then it attacks to try to heal the body. It is a constant battle. Lupus effects everyone differently. My mom has lupus, but hers is different from mine. Some symptoms are the same and some are not.

Lupus takes your energy away. There is fatigue, pain, swelling, fever and rashes. If you have Lupus you will more than likely to have more of the over 200 auto-immune diseases. I have about 5 of them, Rheumatoid Arthritis, Alopecia, Asthma, and Reynauds Syndrome.

There are tests to determine if you have Lupus, but the tests are not completely accurate. They can read false even if you have symptoms. A Rheumatologist is often recommended to treat Lupus. Find a good doctor. You need one that will listen! If you don't think the doctor is serious in treating you, find one that is. People with Lupus are fighting a debilitating disease. There is no reason to fight the doctor too. Lupus is often considered an invisible handicap. You don't look sick or disabled, but you have difficulty functioning and performing even simple tasks.

There are medicines that help alleviate the symptoms of Lupus. There are studies trying to find a cure for Lupus. Lupus can go into remission. When a flare hits it can be mild or severe, but either way it can be very difficult. I am in a study for a Lupus medication. I have participated for 3 years now. I am now getting the real medicine and it helps for about 2-3 weeks. The doctor placed an IV port in my chest to receive the infusion. I actually look forward to the infusion because I know it will help for a while. Plaquenil is often used for Lupus, but people of color need to be careful. They may have adverse reactions to it. It takes 3-6 months for plaquenil to work. There are anti-iflammatories and pain meds. Some people will need anti-depressants. It can be very depressing to be constantly in pain and immobile.

My auto-immune diseases (AI) are not my only health issues, but those are for another day. Right now I am doing ok. I won't say great. But everything seems to under control. I have been fighting off bronchitis for 3 weeks now. The coughing is hanging on and I knew it would. I had a nasty yeast infection throughout my system for months, but I think it is finally gone. Praise the Lord!

By the way, God is my source of strength and hope. My husband is next. He has come to realize what my disease does to me. When I say, "I am done", he knows it is time for me to stop everything and rest a while. He has taken over most of the household chores. I do what I can when I can and he does the rest. He loves me inspite of my health or lack of it. I have the world's best husband!

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.