Prompt: The First Time I… Write a post about the first time you did something. What is it? What was it like? What did you learn from it?

The first time I gave birth gave me a natural high. My body was being used to give life. And it was my baby, the most beautiful baby in the world. I went in feeling so frightened. I hated hospitals and everything to do with them. The pain of labor scared me. The doctor wasn’t my regular doctor who I had been seeing throughout my pregnancy. And my husband at the time wasn’t being supportive.

Back then the rules of the hospital overpowered a woman’s wishes. I could only have one person in the room with me, no switching allowed. And I had to be moved to the delivery room for the actual birth. I was in heavy labor, but no one would believe me. My labor was moving too fast for them.

I remember telling the nurse to check the monitor for my contractions. She ignored me. I screamed for an epidural. No one listened. A new nurse came on duty and realized that I was having contractions every  5 minutes. I was shaking, cussing, and about to rip the IV out of my arm. I wanted my mommy.

She quickly called for an epidural. Told my husband to take a break and snuck my mother in the room. Soon after, I was calm and collected and there was no pain. Now I could focus on giving birth. Instead of fear, I felt pride – pride in my body for what it was accomplishing. When I finally held my daughter in my arms, the joy was overwhelming. She knew my voice. We cuddled and I didn’t want to let her go.

This was first time I felt unconditional love.

Prompt: 5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Five Challenges of Being Chronically Ill

1. I can’t be there physically for my daughters like I want to be. Even though we’ve been to counseling as a family and individually, I still get twinges of guilt when I’m unable to attend a school function, or take care of my daughter when she’s sick.
2. Because of the multiple chronic illnesses and the side effects of the medications that I take, I’m unable to work. Before the diagnosis of Myasthenia Gravis, I had one full time job and two part time jobs. I love working! It was part of how I defined myself.
3. Not knowing if a simple cold will land me in the hospital. I fear sickness and can go overboard with the slightest inkling that I might have a virus or cold. My doctors would say otherwise. They would tell you that I’m noncompliant because I don’t call or make an appointment right away.
4. It’s awful having to take a lot of prescribed pills every day. I’m not really sure why this bothers me so much, but sometimes I get to the point where I purposely forget to take a bunch.
5. I miss a lot of things I could do before I got sick. Most of them are physical, like dancing (didn’t matter what I looked like dancing, I’d dance for hours), running, skipping, walking for a long time (indoors and outdoors), sitting in the sun (even with sunscreen on, that’s a no-no), going to the beach for the day (I can last a few hours sometimes if there’s shade and I can get in the water), and just picking up and going out. It’s harder for me to retain things that I learn. I’m scattered and forgetful.

Five Victories of Being Chronically Ill

1. My empathy has grown a great deal, even for strangers who are suffering or going through a difficult time. Having chronic pain, going through a difficult surgery and being sick so much has opened my heart to others.
2. I’ve learned the importance of listening and not giving advice. When others do that for me, it’s one of the best gifts I can get.
3. Forgiveness is easier. I don’t hold grudges like I used to. Life is too short. It’s easier to be on good terms with someone than to feel hatred towards them. I’d rather use my energy for positive things
4. I take better care of my health by eating healthy foods, by moving around as much as I can (my exercise is stretching and walking around the house), and by using relaxation and deep breathing. I want to live as long as I can and not get any other illnesses that can be prevented.
5. Saying I love you is simple and something I do every day. I want to be sure that my family and friends know how much they mean to me. I cherish them.

Image source for stone steps – http://www.sxc.hu/photo/1249882
Image source for winning runner – http://www.sxc.hu/photo/1241543

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.

1. 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.
2. 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.
3. 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.
4. 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.”
5. 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?

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.

I’m taking part in the Health Activist Writer’s Month Challenge for April. Today’s prompt is – Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

The Contents of My Health Time Capsule

• Every doctor visit note
• Every medical test I’ve been through
• A copy of my medication list (updated as needed)
• A copy of this blog
• Photos of me and the changes my body has been through since my first diagnosis at age 23
• A copy of blog posts and forum posts where I tried to advocate for those with medical conditions
• Photos of my family and friends who have supported me along the way
• Notes and photos of trips I’ve taken and other activities I’ve done since my first diagnosis

What People will Think When they Find my Time Capsule

I think that people will feel sorry for me at first. As they see my good days and the way that I’ve tried to be positive in my outlook in life, I hope that people will be influenced to do the same. I also hope that more people will see the importance of being an advocate for someone in their life or for a specific medical cause.