Sometimes when I am struggling to finish a run or a workout, I remind myself that it could be a lot worse. I remember when I was so sick from Lupus that I could barely move or take a breath. Lupus is basically an autoimmune disease where your body decides your organs are the germs. It affects people differently. Some people have one bad flare, go into remission and are fine for the rest of their life. Some people go in and out of flares and remissions over and over. Some people never go into remission. It can vary from muscle and joint pain to kidney failure.
I have been fairly fortunate - I have never had to take chemotherapy drugs or any of the other horrible meds that some people have to take to get their Lupus under control. I was really sick for two years, but have been in remission for 6 or 7 years now. Mine mostly affects my joints, muscles, nerves - no major organs. I do have a lot of inflammation in my vascular system. The lining of my heart and lungs swell and cause serious chest pain.
I have found a good rheumatologist here. My latest test results are not perfect, but they don't indicate a major flare. Even when I am in remission - Lupus is always there. I'll be fine, then debilitating fatigue sets in out of no where. I've been getting a lot more headaches, muscle pain, joint pain, and chest pain lately. I can deal with it during the day, but it is harder at night. Luckily I'm not around a lot of people late at night for people to see the meltdown that happens at night :) It is not a pretty sight! My legs get all stiff and it is hard to move. My hands get twitchy and weak. and I stutter sometimes. It looks bad, but it really isn't that bad. Doctors say as long as it doesn't happen every day or get worse I just have to learn to manage it. So thankfully I have friends that will let me sit down and rest, who will open my water bottle and who will listen patiently while I stutter. :) Resting when I get like that doesn't really help that much. I just have to ride it out. I do what I can to prevent problems - get enough sleep, exercise, take my med, don't get too stressed or overworked. but it doesn't always work out :)
All in all I am doing way better than a lot of people with Lupus. I am able to run races and do other exercise like combat as long as I modify to my ability. I'm able to build for Habitat for Humanity and travel and do most other things fairly normally. I am very blessed :) and just have to remember that when I'm not feeling so well!!!
I have been fairly fortunate - I have never had to take chemotherapy drugs or any of the other horrible meds that some people have to take to get their Lupus under control. I was really sick for two years, but have been in remission for 6 or 7 years now. Mine mostly affects my joints, muscles, nerves - no major organs. I do have a lot of inflammation in my vascular system. The lining of my heart and lungs swell and cause serious chest pain.
I have found a good rheumatologist here. My latest test results are not perfect, but they don't indicate a major flare. Even when I am in remission - Lupus is always there. I'll be fine, then debilitating fatigue sets in out of no where. I've been getting a lot more headaches, muscle pain, joint pain, and chest pain lately. I can deal with it during the day, but it is harder at night. Luckily I'm not around a lot of people late at night for people to see the meltdown that happens at night :) It is not a pretty sight! My legs get all stiff and it is hard to move. My hands get twitchy and weak. and I stutter sometimes. It looks bad, but it really isn't that bad. Doctors say as long as it doesn't happen every day or get worse I just have to learn to manage it. So thankfully I have friends that will let me sit down and rest, who will open my water bottle and who will listen patiently while I stutter. :) Resting when I get like that doesn't really help that much. I just have to ride it out. I do what I can to prevent problems - get enough sleep, exercise, take my med, don't get too stressed or overworked. but it doesn't always work out :)
All in all I am doing way better than a lot of people with Lupus. I am able to run races and do other exercise like combat as long as I modify to my ability. I'm able to build for Habitat for Humanity and travel and do most other things fairly normally. I am very blessed :) and just have to remember that when I'm not feeling so well!!!
No comments:
Post a Comment