Prompt: Miracle Cure. Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer 
TAMPA(AP) – The Mysathenia Gravis Foundation of America in cooperation with the Muscular Dystrophy Association and the The National Institute of Neurological Disorders and Stroke announce a cure for Myasthenia Gravis, a chronic neuromuscular disease that causes muscles to tire and weaken easily. After the Phase 4 trial of a surgical procedure known as a thymectomy — removal of the thymus – along with Humira, a drug used to treat Rheumatoid Arthritis, 90% of the 150 patients have gone into remission and remained in remission for six months.
Neurologists are working with Thoracic Surgeons to formulate plans for thymectomies as patients will require this surgery before the new prescription can start. Hospital staff will be educated about the surgery, recovery and the disease. After this cure was announced, it was learned that many in the medical community need updated information about Myasthenia Gravis.
Muscular Dystrophy clinics are in the process of stocking up on Humira, as the initial injection must be done while under a doctor’s care. Some patients have had a serious reaction to this medication. Within the trial, one person went into anaphalytic shock, one had hives. This is not unusual with any prescription. This brings relief to those diagnosed with Myasthenia Gravis, approximately 20 out of 100000 individuals in the U.S. have been diagnosed with this disease.
Photograph of the patient showing right partial ptosis. The left lid shows compensatory pseudo lid retraction because of equal innervation of the levator palpabrae superioris (Herring's law). b. Post tensilon test: Note the improvement in ptosis. (Photo credit: Wikipedia)
Disclaimer: Wouldn’t this be wonderful? Unfortunately, there is no cure for Myasthenia Gravis. Humira is not a medication used to treat MG. If you want to learn more about MG, please take the time to read, “What is Myasthenia Gravis (MG)” from the Myasthenia Gravis Foundation of America. It is one of the best descriptions I have found.
Frida Kahlo (Photo credit: Travis S.)
Prompt: Five Dinner Guests. Who are 5 people you’d love to have dinner with (living or deceased) and why?
Dinner would be in a restaurant or catered, so I could relax, have a good meal and enjoy the time with my guests. I’d want to speak to people who have overcome obstacles, remained positive and uplifted and inspired others.
- Nick Vujicic - Born in 1982 in Brisbane, Australia with neither arms nor legs, Nick has gone on to travel around the world speaking about his life and his faith. He has formed the nonprofit, Life Without Limbs.
- Frida Kahlo – Well known painter, born in 1907, Frida wanted to live an independent life. She contracted polio and then was in a street car accident which caused life-long chronic pain. The accident caused fractures to her spine, collarbone and ribs, a shattered pelvis, and shoulder and foot injuries. She endured more than 30 operations. She fought to paint even when she couldn’t or shouldn’t get out of bed.
- J.R. Martinez – After suffering smoke inhalation and severe burns to more than 40 percent of his body as a soldier in the Iraq war, and facial disfigurement from the burns, J.R. went on to take a role on All My Children. He also won Dancing With the Stars Season 13, is a motivational speaker, and takes part with nonprofit work.
- Helen Keller – I don’t think I need to say why she inspires me. I could learn so much from her. One of my favorite Helen Keller quotes, “I seldom think about my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times; but it is vague, like a breeze among flowers.”
- Marcia Van’t Land – The author of my favorite book about chronic illness,Living Well With Chronic Illness
, she has brought me out of deep despair and helped me feel that I am not alone.
Who did you choose as your dinner guests?
Prompt: Learned the Hard Way. What’s a lesson that you learned the hard way. Write about it for 15.
This lesson is one that I continue to learn over and over. I’m stubborn about it. When my doctors tell me to stop, I listen for a bit, then go back to my old routine. When I end up learning the hard way, I stick to it for a much longer time…
Because of Myasthenia Gravis, the other chronic illnesses and the medications I take, overdoing is a very bad idea. I should do a little bit each day physically. And if things are stressful, I should really take it easy. When I do too much, I pay for it. Later in the day, the next day, or for days after, I can feel more tired than normal. I’ve been to the point where I cannot get out of bed and sleep for most of the day. My muscles get more weak than normal. I’ve had trouble swallowing. And then I realize, it’s because of what I’ve done to myself!
Sometimes what I think is a flare, is actually my body giving my a kick in the pants to remind me about overdoing it. There’s a slight difference and usually it takes a doctor visit to recognize it. Then I feel like a jerk. Get a kind lecture and go on my way, promising not to do it again.
The urge to get the most out of life is still there, now more than ever. I want to seize every minute, every opportunity.
But, when I start to see my body rebelling, I do stop most of the time. I may regret it while I’m doing it, but when something else comes along and I’m able to take part, I pat myself on the back.
What lessons are you learning?
Prompt: Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.
My Health Advocate Pinboard – hope you’ll follow it and my other boards!
Sleep is good for you (because I have to sleep a lot, sometimes too much):
Image Source - http://simplegreenorganichappy.com/2012/04/value-of-sleep-technogel-pillow-review/
Myasthenia Gravis Warrior (because this image shows how much symptoms can vary among people with MG and how strong we are):
Image Source: http://www.cafepress.com/donlynsdesigns
Overcoming Suffering (because this inspires me to keep going and to keep advocating for others):
Image Source - http://www.hffcf.org/hope-membership/
Image Sources: 1. http://simplegreenorganichappy.com/2012/04/value-of-sleep-technogel-pillow-review/
2. http://www.cafepress.com/donlynsdesigns
3. http://www.hffcf.org/hope-membership/
Prompt: 10 Things I Couldn’t Live Without. Write a list of the 10 things you need (or love) most.
My list is related to my chronic illnesses and in no particular order:
- My iPhone – to play games, read email, tweet, stay in touch on Facebook all while I wait in doctors’ offices
- Body Pillow – helps make resting and sleeping more comfy. Takes the pressure off those joints and muscles that hurt and ache.
- Salads – my go to food when I’m craving junk food. I’m not sure what it is about all of those healthy, colorful veggies, but they taste delicious and fill me up. (I try to keep cut up veggies in containers to make a quick salad when I’m not feeling well.)
- B12 Shots – I get a shot every two weeks because my body does not retain B12. This helps increase energy.
- Relaxation and Deep Breathing – used for chronic pain, migraines and general aches and pains. I use this as often as possible since I dislike pain medicine.
- Cup of Tea and Toast- it’s my comfort meal as needed. I drink my tea decaffeinated, with milk and sugar.
- Stuffed Mickey Mouse – he’s with me when I don’t feel well or in the hospital.
- Prescription Medications – I hate to add this to my list, but if it weren’t for them, I wouldn’t be alive.
- My Doctors – I may complain about some of them, but the ones that are still on my “don’t fire” list have listened to me, seen me as a whole person and treated me so I can live my life to the fullest.
- Disney World – my happy place, where I can go when I feel like life is a against me.
It goes without saying, that my family and friends are my life. They are the best support system and I’m blessed to have them. I didn’t put them on the list because I couldn’t imagine life without them.
Prompt: Stream of Consciousness Day. Start with the sentence “This morning I looked in the mirror…” just write, don’t stop, don’t edit. Post!
This morning I looked in the mirror and saw a tired face, with messy hair and too pale skin. It was the hangover appearance of the day before, which was spent in bed with a fever and stomach ache. The fear was clearly in my eyes as I was scheduled for tests to determine if I had Hydronephrosis of my right kidney again and a UTI.
When it feels like things are going well, something happens to create chaos – a new symptom, a repeat of an old one. No more kidney stones! Not another stent! Soon I realize that there are other doctors I was supposed to see and haven’t even made appointments, tests that need to be done, B12 shots that were missed. It begins to feel overwhelming.
I catch myself before it gets worse. Look into that mirror and give myself a pep talk. I feel better than I did yesterday. The doctor is taking quick action so if it’s an infection, I’m already on an antibiotic. As soon as I get home, it’s time to make appointments. My support system is in full swing. Now get your butt into gear and go for those tests! Put a smile on your face and you’ll feel better.
And I do. And another day will bring along these same issues. Some days will be worse than others, some much better. But, I’ll always “do”.
