When I was still trying to understand my condition, after testing made it clear what I had, I was just a walking jumble of questions. It seemed that nothing had all the answers. No one person had what I needed to know. It was aggravating, to put it mildly. As someone who is more likely to covet knowledge held in your library over the jewels in your bedroom, when I want to know something, NEED to know something, then I stop at nothing to get my answers.
The really tough ones were about my symptoms, ones I never spoke about or simply could not remember to talk about when the time came. There were so many little symptom checkers all over the place that didn’t list every symptom I had. Was this normal? Was that usual? Am I supposed to feel this way? Do others get these issues?
It felt like I was hitting wall after wall. I joined a great online group called Life with Lupus. I found blogs from other Lupus patients, such as Despite Lupus, that helped some. The biggest help actually came from meeting another person, face to face, who had Lupus. Over a simple meal we discussed her symptoms and issues. I got the back story on how she found out she had Lupus. Our stories were so different that I realized something that no one really said aloud; Every patient reacts differently to Lupus.
Finally I understood why I was always tired and confused, and worse was that I was always in pain. The only other Lupus patient I spoke to, besides the one mentioned above, face to face had thought I didn’t have the same type of Lupus as she did because my symptoms seemed so different from hers. She didn’t have constant pain. She was not dealing with major scars on her face from the terrible rashes. Her hands did not hurt, nor did they have scars and bleeding. Her symptoms where more toward the tiredness and confusion. She had concentration issues and rarely had any flare ups. Her symptoms were mostly in check for over 15 years. She was convinced that she needed to do some research to help me with what she had began to believe was simply a type of skin Lupus that I had.
After talking more, we both came to understand that we had the same type of Lupus; Lupus SLE. The issue was not the diagnosis, but it was the information that was provided to us about Lupus. Another oddity was that as soon as we each started talking about our issues, all three of us got a flare up at the same time. I believe it was cause by the mental exhaustion we went through comparing each case. The first woman nearly died in the hospital from strange symptoms when she found out about her diagnosis. I had spent a year with face rashes no one could help me with and a slowly creeping fatigue that would take away my life as I knew it. The second woman had symptoms that mostly dealt in cognition and mild fatigue that had stayed in check for over 15 years.
Baffling that each of us had the same illness, yet were so vastly different. Two not able to work currently and one working full time. Two with breathing issues and one not. Two with skin rashing, and the other with only mild scalp issues. One with constant pain, one with mild inconstant pains, and the third with only mild discomfort from swelling time to time. It was that way with every symptom we discussed. So different, yet all the same diagnosis. Why? It was easy. Three different women with three different medical and familial histories. Three different life styles and diets. Three different bodies suffering from Lupus SLE, yet each not receiving the same evil little friends of Lupus.
Talking to more people, I found out about the other issues I had. My symptoms were not so obvious to doctors. My Rheumatologist was fantastic, though very unspoken in her findings and thoughts. So when I listed off my various issues (not able to give every one I knew to be of use to her, granted) she did not say that I had some of the other issues I came to find out I had. The first thing she said, beyond Lupus, was a word that started with D and was so…. Well, it sounded like gibberish when she said it. I could never quite grasp what she said. All I knew was that it attacked both my skin and my muscles, namely my leg muscles.
When reading a blog, the other Lupus patient discussed her issue with Raynauds. I wondered if I had it too. I was not sure if I was simply creating more issues in my own self worry and self doubt or if it really was an issue I had. I decided to keep careful track of the problem. Finally it was my mom who started calling one of my fingers “the ET finger” jokingly that got me discussing the issue with my doctor. The woman on the blog had said that she simply put up with the problem and that she decided not to take medicine for it. I wondered if I was being a wimp about it. I tried to just ignore it, but when I spoke to my doctor it was because it no longer could be ignored. The trouble was that it hurt so much I would start yelling at my fingers for hurting and could not sleep because of the pain and cold of my fingers. I wanted to bite them off. No joke, I actually thought about it. They hurt that badly.
The medicine my doctor gave me was simple. It started working quickly. Lesson? Don’t psych yourself out. If it is not usual to YOU then it is not usual. It is not normal and needs to be dealt with. If your doctor, Rheumatologist, says not to worry about it but you keep having a problem: TELL THEM! You are not a wimp. You are not someone who is just freaking out. I’m not saying there will not be times here and there when you are in fact just worrying over nothing. I’m saying you should be your own health Advocate.
I have had to point out things several times that my doctor other wise would not have diagnosed me with or focused on. I have to deal with things that I really wish I did not need to, but the good thing is that they are being handled. Don’t just ignore a problem and wish it away. That does not work. If you have symptoms, write them down. Keep track of them. Do some research on the internet. I love checking out pictures on google of things other patients posted. I compare rashes, symptoms, etc. That’s another reason I like being part of Life with Lupus. I’m going to put the link below for you to check that out. You can say what is really going on and the other patients will talk to you. Even if all you are able to do is rant, they will listen.
If you don’t deal with your symptoms and issues you will crash and then your symptoms will get way worse. It’s like ignoring your body when you have a fever. The fever does not just go away. You have to do something about it. Treat it.
Speaking of Fevers, one of the things I quickly found out was that I could not take regular medicines, such as asprine, while on the medications assigned by my doctor. Web-MD and even the actual websites for the companies that made the medications will list any interactions. The other thing I did was develop a healthy relationship with my Pharmacist. Did you know that your doctor does not know much about the medications you are being prescribed unless they personally take them? They are paid to push certain medications. A general list is given of appropriate medications that work with your needs. They have a very basic knowledge, and each specialist has a unique understanding according to their specialty. But the person you are expected to discuss your medications with is not your doctor. Your friendly Pharmacist went to special schooling just to get their degree.
Allen, my pharmacist, is a great guy. Any time I get a new medication or want to start taking a supplement, herb, etc, he talks to me about it. Why? He knows ALL of my medications. Not just some, but all of them. He’s even called doctors back to ask why they assigned me one medication when he says I should be taking another. They always agree with him. He knows his stuff. I also took the time to get a few books on natural medicine. Why? Because I can not use the other stuff. No NyQuil or Aspirin or me. Nope. Good bye Excedrin, my old friend. Yarrow, clove, special teas, and the like are now my new combatants against the problems that ail me. That and a good many ice packs. I have two heat pads but no microwave, so there goes that.
Do your homework.
Write things down. You are now your own second opinion.