Do you feel like you’re on stage while living with your chronic illness? I feel that way a lot because people don’t understand that my strength and abilities go up and down hourly. One day I may be able to clean the house and the next day I’m lucky to be able to get out of bed. It plain sucks, but it’s my life. I’ve lived with it nearly a decade so it has become the norm for me.
Since I’ve lived with lupus andfibromyalgia some days I’m in my wheelchair and other days I’m able to walk around. I used to feel very subconscious knowing what people were saying and thinking about me. I heard- I was faking how much pain I was in or she doesn’t look sick, or it cannot be that bad. I could go on about the snide remarks.
All of these nasty comments made me feel like I needed to act a certain way. And it stinks how other people’s thoughts make you feel like you have to act a certain way.
Finally, I’ve got to that point that the naysayers can say whatever they want to say. I am going to be myself and I am going to be myself. Walk a mile in my footsteps then tell me how I feel living with chronic pain.
Do you feel like you have to meet people’s expectations or feel like you’re on stage?
Last week, I went to the rheumatologist to have my check up and lab work. My lab results won’t be in for a couple of weeks. He did the typical tests including checking my vitamin D level I always call about my test results. Why? I don’t want something to be found on my labs six months later that needed addressing. I know sometimes it annoys the nurse, but it’s my body and my health. It’s my way of being active in my own healthcare. Doctors make mistakes just like patients make mistakes so I don’t want to fall through the cracks. Ultimately I’m the one that pays the consequences if something is missed. Usually two weeks is enough time to receive my results.
Do you call your doctor for test result? Should doctors call a patient even if the results are negative? It’s your turn.
The Midwest is being hit by a heat wave this week, which is keeping a lot of people indoors. Today the feels like was 115. When I walk outdoors it’s like walking into a sauna. The heat has kept my daughter and I from taken our short walks in the evening. I’ve been desperate to reduce my pain level so I’m trying to exercise some. The heat has been affecting our air conditioner too. It seems the heat wave has increased my pain level. I don’t know if it’s the heat or a typical painflare up. This morning my pain level was a 7 out of 10 and I thought I was going to lose my mind. Thankfully as the day went on my pain reduced some.
Do changes in weather affect your pain level? How do you decrease your pain level? Have you been hit with the heat wave this week?
Would you ever write a book about your illness? It’s something I’ve been contemplating for a while. I don’t really know where to start. Does anyone want to listen to the struggles of living with a chronic illness? The reason I started this blog is to spread awareness of life living with lupus and fibromyalgia, but who would read about my many ups and downs of living with this illness. How would I make it a worthwhile read? A lot of questions go through my mind about writing about my illness. I don’t want to write something that makes people think poor woman living with a chronic illness. Yeah, that was how I thought to start, but I’ve learned to deal with it.
Would you consider reading or writing about living with a chronic illness and its many ups and downs?
Would you ever write a book about your illness? It’s something I’ve been contemplating for a while. I don’t really know where to start. Does anyone want to listen to the struggles of living with a chronic illness? The reason I started this blog is to spread awareness of life living with lupus and fibromyalgia, but who would read about my many ups and downs of living with this illness. How would I make it a worthwhile read? A lot of questions go through my mind about writing about my illness. I don’t want to write something that makes people think poor woman living with a chronic illness. Yeah, that was how I thought to start, but I’ve learned to deal with it.
Would you consider reading or writing about living with a chronic illness and its many ups and downs?
“God Grant Me The Serenity to Accept the Things I cannot change
And change the things I can.”
~~~~~~AMEN~~~~~~~
” By Karl Paul Reinhold Niebuhr”
One thing I cannot change is my illness, but I can change how I react to my illness. For the last two weeks, I’ve been in a lot of bad pain everyday. It’s been pretty unbearable at times. I’ve found strength in the serenity prayer.
May is Lupus Awareness Month and World Lupus Day. This past year Benlystawas approved by the FDA, which is a big deal because until now their hasn’t been a drug approved specifically for lupus. It took over 50 years to get to this point.
What is Lupus from World Lupus Day?
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Every day, more than 5 million people worldwide struggle with the often debilitating health consequences of lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys, and brain.
I learned this morning that Toni Braxton has Lupus so this is a tribute to her. I am so glad to see when a celebrity tells the world that they have lupus. It gives a voice to a disease that affects so many people who don’t live in the spotlight. Thanks Toni for sharing that you have lupus. She announced her lupus diagnosis to the public in 2010, which took a tremendous amount of courage.
