Prompt: Third person post. Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc.) as you can. Don’t use “I” or “me” unless you include dialogue.

The nurse was preoccupied with beeping monitors, tangled IV tubings and deciphering labs. The unshaven husband was by the patient’s bedside. He’d sit down for a few minutes then suddenly feel the need to move around, to break free of his fear. Up out of his seat, he’d walk around the room, looking at the same framed picture of an idyllic lake scene, switching the TV channels and stretch his aching back. He would refrain  from asking the nurse when she expected his wife to wake up again, although that’s all he could think about.

Not the type to scare easily, he was startled when the noise of the commentator’s voice came on the TV that there was breaking news. “Now what?” he muttered under his breath. Shortly, the nurse came to look at what was going on.

A scene of New York City, with crowds of people in the streets appeared on the screen. It was easy to be afraid without a word being said. The sight was all too familiar. The voices from the TV blurted that there was an extensive blackout with no known cause. The husband finally spoke to the nurse in a questioning voice, “Terrorists. That’s all we need now.” She patted him on the arm. “We’re safe.”

A movement from the bed was heard. First an arm moved, and then the patient’s eyes were opening and shutting. The nurse spoke quietly, “You can keep your eyes closed if it’s more comfortable. Your husband is here and you’re doing just fine.”

“I can’t see! Why is it so dark?” More squirming and tugging on the IV, not intended to do harm, but there was a loss of understanding. Fear was overwhelming the patient. The husband caressed her face, told her the surgery was done. She was fine. Slowly the fidgeting ceased.

A few hours passed and the patient attempted to speak, but it sounded like she was drunk, all slurred and sloppy. The nurse explained that the anesthesia and the pain medicine were making it difficult to talk. The patient tried to open her eyes again and when she did, everything was a blur. She began to cry. It was just her and the nurse and no matter what the nurse said, she couldn’t stop crying.

The patient was thinking that she had this surgery to clear up her double vision, to help her keep her eyes open, to help make her speech clearer. And it didn’t work.

Side note: This is the story of the day I had my thymus removed in a surgery called a thymectomy. It is done to help reduce symptoms of Myasthenia Gravis. I did end up speaking much better and my droopy eye and double vision improved greatly. I spent about 10 days in the hospital. Full recovery took about 3 months.

Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

One of my favorite chronic illness quotes is, “My disabling chronic illness is more real than your imaginary medical expertise.”

When I was first diagnosed with Myasthenia Gravis, I was terribly ill. It began with a dropping eyelid which quickly led to generalized muscle weakness and fatigue. I went from a vital woman with two children, working a full time job and part time jobs, volunteering, taking care of my family and home and socializing to being almost bed bound.

Family, friends, people from church, parents of my younger daughter all reached out to help because my household was falling apart. I was so grateful. My husband and I were busy with doctors, medical tests, and trying to find the right treatment for me. And we were in a state of shock. Once we found out that I needed a serious surgery – a thymectomy (the removal of my thymus gland), we got a second opinion, did a lot of research and took a few weeks to think it over, the unwanted advice started to come in.

People who had no idea what Myasthenia Gravis was, all of a sudden knew someone who was cured by drinking this juice or taking that vitamin. Why not try acupuncture?  You need your thymus gland to fight off infections. Come to this aromatheraphy session. Visit my chiropracter.

I decided on the surgery since time was of the essence. The thymus gland is close to the heart so it’s like having open heart surgery (the thymectomy that I had) and recovery was long and difficult. Most of my family and friends were understanding, but some took it upon themselves to have that “see, I told you” moment they were waiting for when they saw how weak I was. Of course, after this type of surgery, the Myasthenia Gravis was worse than ever, plus I developed sinus tachycardia. But those people who wanted to be right, wouldn’t listen to reason.

After about six months, I was fully recovered and on a drug regime that kept the serious symptoms at bay. The surgery was not meant to cure me, but to alleviate symptoms and reduce the risk of getting worse, like needing a trach, requiring plasmapharesis, etc. But not being cured, kept those “medical experts” happy and more advice came in. Soon, people were telling me it was in my head, that I was depressed, that I was lazy. And I wished that they could live a few hours in my body, not to get back at them, but for them to understand.

Sadly those people didn’t get it. They are no longer in my life. If I run across people now who try to dictate what I should be doing medically, I won’t get close to them. In the end, I’ve learned who my true friends are.

If someone is sick, ask if they want advice first. They may have all they can handle. The most important thing you can do for someone you care about, is to be there for them. Listening is sometimes the best medicine.

June is Myasthenia Gravis Awareness month and for 2011, the  main focus is “Uniting for a Cure… Together we are Stronger.” The Myasthenia Gravis Foundation of America is asking us to help share information about this disease and to help find better treatment and ultimately a cure.

As someone who has had Myasthenia Gravis for 8 years, I’m always willing to do what I can to help this organization. Plus, since I know that even medical personnel often do not know what MG is, awareness is very important. In fact it can save lives. When someone with MG goes into a crisis, they may not be able to speak or let anyone know what is happening with them. Everyone from first responders to surgeons needs to recognize the symptoms of Myasthenia Gravis, how to treat someone in crisis and what medications can help or harm.

I’ve written about what my life is like with Myasthenia Gravis. It gives you a picture of some symptoms people may experience. I hope that you’ll take the time to read it.

The Myasthenia Gravis Foundation of America describes MG as:

Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms, legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue. Currently, there is no cure for MG, but there are effective treatments.

My first symptom of having MG was a droopy eyelid, which quickly moved to weakness in other parts of my body. I have had a thymectomy within the first 6 months of being diagnosed. I take Mestinon and Cellcept and am seen by a neurologist who specializes in MG through the MDA. I have good days and bad days and have learned my limits. Some days I need to use a scooter to get around, some days I can walk around a shopping mall. The heat of Florida does a number on me, so I stay indoors often, or go out in the evening.

MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment options and provide information and support to people with myasthenia gravis through research, education, community programs and advocacy.

Please support Myasthenia Gravis Awareness Month by sharing this post, by volunteering, by making a donation, and by being an advocate.

I was fortunate to get the Swine Flu shot last weekend since I have fit in the category of having a chronic illness. My husband and daughter had their shots too. My husband got his because of me and my daughter because of her age. I’m relieved to have this done as getting H1N1 is not on the top of my list along with having  Myasthenia Gravis and other autoimmune diseases.

I’m also on immunosuppressant drugs so I had no fear getting the injection. I’ve heard all the hype against it, but being put on a ventilator to breathe and my doctor being unsure if I can even handle Tamiflu, the drug to take for the Swine Flu, puts it all in perspective for me.

There were no side effects at all, just a slight discomfort where I got the shot. That only lasted a few hours. I was told not to take any medication like Tylenol as it might prevent the vaccine from working. My 1o year old daughter’s arm hurt her for more than a day, but she is getting allergy shots twice a week and her arm is sore from that.

Remember you cannot use the mist if you have a chronic illness or are taking immunosuppressant medications, so get your Swine Flu shot as soon as possible to avoid any serious health problems.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myasthenia Gravis, Sjogren’s Syndrome, Fibromyalgia, Rheumatoid Arthritis and Ulcerative Colitis.
2. I was diagnosed with it in the year: with UC in 1985, with MG in 2000, the rest 2001 or the year later.
3. But I had symptoms since: 19844 for the UC
4. The biggest adjustment I’ve had to make is: not being able to work and giving up my active lifestlye
5. Most people assume: I’m not sick
6. The hardest part about mornings are: waking up because I’m so tired
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: pain and insomnia
10. Each day I take __ pills & vitamins. (No comments, please) 36
11. Regarding alternative treatments I: am not able to try them because of the medications I am on for Myasthenia Gravis. There are many interactions for a certain prescription I take.
12. If I had to choose between an invisible illness or visible I would choose: visible so more people would understand
13. Regarding working and career: I’m sad that I can’t continue working in the career I chose for myself. I’m happy that I can work as a blogger though.
14. People would be surprised to know: that I’m in pain almost all the time.
15. The hardest thing to accept about my new reality has been: that I have to rely on other people for simple things.
16. Something I never thought I could do with my illness that I did was: attend a conference.
17. The commercials about my illness: re: Fibromyalgia and RA – make it seem like a pill or shot cures the disease.
18. Something I really miss doing since I was diagnosed is: dancing, drinking  a few beers, running, walking as much as I want to
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: blogging and photography
21. If I could have one day of feeling normal again I would: spend it with my family, listening to loud music, dancing, cooking and eating all day long
22. My illness has taught me: to appreciate every moment
23. Want to know a secret? One thing people say that gets under my skin is: you look great!
24. But I love it when people: recognize that most of the things I do take me a lot of effort
25. My favorite motto, scripture, quote that gets me through tough times is: I can do all things through Christ who strengthens me. Philipians 4:13
26. When someone is diagnosed I’d like to tell them: find a doctor who is supportive and knowledgeable and a support system
27. Something that has surprised me about living with an illness is: how understanding my husband and family are
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter, who was much younger for play dates so she didn’t have to sit home while I slept
29. I’m involved with Invisible Illness Week because: it’s so important for people to understand about us, what our lives are like, what we go through each day and how they can support us
30. The fact that you read this list makes me feel: fantastic!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Remember the Bionic Woman and the Six Million Dollar Man? I often think about being able to replace my non-working body parts as easily as they did. And it sure would be great to be able to replace them with better performance parts.

I’d get new joints for most of my body, new muscles for the ones that hurt from Fibromyalgia, and new tear ducts and salivary glands that actually work. I’d even see if I could get a re-made neuromuscular junction so that I’d no longer have Myasthenia Gravis.

I’m sure there would be a lot of upkeep with these new parts, but it wouldn’t hurt to fix them. Plus there’d be spare ones if there was a big problem. Ah, the joys of imagination.