Prompt: Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

Reminder: My daughter, Sammi who is 12 years was possibly diagnosed with Long QT Syndrome. She’s a borderline case, but we will get a firm diagnosis this summer.

Conversation between myself and my husband, Shawn….

Me: I really want Sammi to spend a few weeks with her sister in Kansas this summer.

Shawn: We need to get her to the Mayo Clinic or Shands Hospital this summer to find out if she has it.

Me: She has the whole summer off. There’s plenty of time for her to go to Kansas.

Shawn: I know, but that’s the most important thing we need to do.

Me: I agree, but it shouldn’t interfere with her having fun.

No reply….

Me: Shawn, we have to let Sammi live a regular life. Sheltering her isn’t go to do anyone good.  She really needs to spend time away from us! I’m afraid that we’re only hurting her now and for her future.

We discussed how our daughter is spending more time alone at home, without a social life. Vacations are always together as a family and she’s never with a babysitter. Even if she does have Long QT Syndrome, she’s going to live on her own one day, hopefully by the time she goes to college. Preparing her needs to start now.

It’s hard not be overprotective when your child has a serious illness. Even though she doesn’t have the “real” diagnosis, she cannot take a very long list of medications, including antibiotics. A cold can keep her out of school so it doesn’t get worse. But, just like me she’s going to have to live her life to the fullest. It needs to start now.

Today for the Health Activist Writer’s Month Challenge – #HAWMC – the prompt is to write about anything we want. My decision is to focus on the positive things that have come from being diagnosed with multiple chronic illnesses. Don’t believe there can be constructive outcomes from having five medical conditions that I’ll live with for the rest of my life? Think again.

Gratitude

Instead of feeling down about how I feel I’ve learned to be grateful for the small things in life as well as the things I’ve taken for granted. Sure, I have bad days:  days when I spend the day in bed, crying over nothing or something specific, being hateful to others, etc.

Knowing that my health can be so much worse helps me keep me be thankful for the treatments that I receive that allow me to walk, breath without a trach, travel, maintain my eyesight and giggle with my daughters.

After I was treated successfully for depression (still on medication), I learned to enjoy the small things around me: the birds in my backyard that I watched through the window, the taste of a good meal, the hug from a friend.

Overcoming Obstacles

Having a medical team that works with me and understands that I will struggle to get what I want and be compliant helps me overcome obstacles that should be caused by the chronic illnesses. My goal is to live a life as “normal” as possible. I do use a scooter when I have to walk long distances, but I will walk as much as I am able without it. After a doctor put me prescription pain medication because of chronic pain from Fibromyalgia, Rheumatoid Arthritis and Osteoarthritis, I realized that I wasn’t myself. I was sleeping all the time and in a daze. Not the life I want to lead. So I asked to be taken off the pain meds and to find another way to deal with the pain. Thank goodness for trigger point injections, Humira, and relaxation and breathing techniques.

Being My Own Advocate

Before my diagnoses, I would listen to what a doctor told me without question. Now I do my own research, fire doctors, speak up for myself if I feel that I am being treated badly and have informed my family to do the same. Bringing a list of questions to a doctor visit no longer embarrasses me. Requesting information about side effects of medications has become second nature. I know that I have choices and feel more empowered. And because of this, I am an advocate for my daughter who also has medical problems.

Advocating for Others

Besides being an advocate for my daughter, I have made it my goal to be an advocate for others online. This is one of the most cherished outcomes of becoming chronically ill. The friendships I have made are treasured. The information I have shared is fulfilling.

You too can have a positive outcome when you are diagnosed with a chronic illness. It may take time, actually it probably will. Once you can see that the changes your body will go through do not have to change the inner you, you will have the opportunity to be grateful, to overcome obstacles and to be a healthcare activist.

Health haiku. Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like.

This prompt scares me. I used to write poetry, but never followed rules. Cut me some slack as I try my best…

The age of forty
I believe in beginnings
I am faced with fear

Nighttime – the enemy
I long for sleep and rest
Alarm clock rings – No!

I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.

I began to write about my health as therapy. It felt good to get the feelings about how much my life had changed out my head and onto my blog. At first, I didn’t even know that it was blogging! I found a site on Yahoo and just wrote about whatever came to me. Soon, I realized that I was so negative because people would leave me comments to cheer me up. When I realized that I was such a downer, I wanted to lift up other people’s spirits. There were so many others who had it worse than me. I began to write about funny things that happened to me at a doctor’s office, at home, when I was out. I made fun of myself and ended up laughing at myself too. My negativity began to melt away in real life and my loved ones noticed. Doctors, nurses, patients complimented me for always smiling.

Now, others were coming to my blog to get a laugh or find some inspiration. Realizing that I was helping others made me feel better. My outlook changed. Soon, I had a real blog and then another (this one). I continued to share my positivity. Of course, some days, I had to vent.  Next, I began to research about illnesses and share that info. Comments were left because someone found my post about their rare illness, or because they learned something new.

When I heard about National Invisible Illness Awareness Week, I knew I had to get involved. That’s when my efforts at being a health advocate began in full force. Blogging was one of the best outlets because I could write a heartfelt post and then share it on Twitter, Facebook and forums. When my daughter was diagnosed in late 2010 with chronic health issues, my advocacy efforts increased.

Comments, tweets and other connections help me to continue. If I reach one person, I’ll continue to write about my health.

Why do you write about your health?

Superpower Day. If you had a superpower – what would it be? How would you use it? – My superpower would be Organizing so I could handle all of the paperwork, phone calls that comes along with being chronically ill. Insurance paperwork would be taken care of in the blink of an eye and not one item would be lost, ever. Family Medical Leave papers for my husband would be filled out and sent in to work with copies made, in a timely manner. I’d be able to fit in all of my doctor visits, all of my medical tests and remember to take all of my medications on time. There would be no need for more than one calendar, or reminder notes.

Files would be in chronological order and alphabetical order. I’d look for something and find it immediately. Bills will be even before I get them in the mail. I’d never stress over anything related to insurance coverage, prescriptions and refills, missing appointments, or making payments.

Organization may not be your typical kind of superpower, but multiple chronic illnesses call for an extra-special type of help!

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.