Dear 18 Year Old Connie,

You live such an amazing life, even though you think time doesn’t move quickly enough. You want to be older so you can do more things – live on your own, travel, get married, and earn more money. You hate the way you look because you’re so thin. You feel lonely because you don’t have a relationship. But these thoughts and feelings are kept inside, told to no one. So you put on a happy face, go out until all hours of the night, drink too much, do drugs and try to hide your feelings. You’re known as the party girl – the one who takes hours to get dressed and put makeup on, goes out at 11 PM and doesn’t come home until 6 AM. You live for the weekends, school vacations and the summer.

You’ve been lucky that you’re alive with some of the choices you’ve made. Thinking that nothing can harm you is a childish way to think. It’s a shame that you won’t learn that for a long time. Did you ever consider alcohol poisoning, AIDS, rape, or death could be a consequence of your actions? You’ll be grateful that you don’t have an addictive personality, or your life would be changed forever.

People can’t believe the amount of food that you eat and you still don’t gain a pound. And this is so easy to get used to. Who needs to exercise when you’re so skinny? And that’s a habit to fall into also. It’s understandable that you wanted to gain weight, but eating healthy foods instead of junk food would create better eating habits later in life. Just because you didn’t need to exercise, didn’t mean you should become lazy. You loved to run, roller skate, ride your bike because you felt energized. It gave you a high, but I guess the drinking and drugs took the place of that high. In just a few years, you’d wish you had energy for any of that activity.

The good thing is that you loved people and hated to see others hurt. Soon, you’re going to learn that you deserve love and don’t deserve to be treated badly by anyone. It may take the love of your child to recognize that, but that’s what life will put before you. Then you’ll learn to open up about how truly unhappy and afraid you are. Again, it will be for your child’s sake, but soon it will be for your own too. Your friendships and the love of your family will help you get through some difficult times, both emotionally and physically. And you’ll be surprised. The light will dawn on you though, through soul-searching work, tears, anger and fear.

That strength will help you through health problems that may have caused others to give up. Instead, you’ll grieve and move on. Reaching for the love of those around you. Leaning when it’s necessary. Being bold and courageous when it’s possible. Then, helping others for the right reasons.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

If I were to write a book, it would be based on being a healthcare advocate. I’ve become one for myself, have tried to help others through this blog and now am an advocate for my daughter, who has been diagnosed with cardiac conditions and a sleeping disorder. The Title would be – Healthcare Advocacy Changes Lives (not very creative, but inspiring). Why am I writing about this?

As part of the Health Activist Writer’s Month Challenge, I’ll be writing here every day. My first prompt is – “Titles of my future book. Say you’re writing a book about your life, community, condition, or Health Activism. Come up with 5 working titles and a quick book jacket synopsis.”

For the quick synopsis of Healthcare Advocacy Changes Lives, it would read something like this – Multiple medical conditions changed her life, but she decided to take control of her healthcare and teach others to do the same. Connie Roberts teaches you that being an advocate can give you confidence and even save your life.

Some other book titles:

• Who Says You Aren’t Sick? (for those of us who have difficulty getting a definitive diagnosis)
• Your Doctor isn’t God
• Don’t Be Afraid to Ask Medical Questions
• Being Tired All the Time Isn’t Normal

What type of book would you write and what would the title be?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Venus Williams withdrew from the US Open because of her diagnosis of Sjogren’s Syndrome. Her decision to drop out of the US Open came at the last minute, when she was having trouble lifting her arms. Ms. Williams stated in an interview on Good Morning America that she hasn’t been feeling well for a while. She complained of not having stamina, but there was no diagnosis from that. Then she began having difficulty breathing and was diagnosed with Asthma, but medications to treat Asthma didn’t work.

Image via Wikipedia

Over the summer, her joints began to hurt and change shape. She lost the feeling in her hands, which began to swell and feel numb. The overwhelming fatigue began to interfere with playing tennis as well. Then the dry eyes and mouth became noticeable. With these symptoms, she was able to get a diagnosis. Venus William has begun treatment for Sjogren’s Syndrome and hopes to go back to tennis again, but admits that she doesn’t know what her future holds. She is like me learning to live with Sjogren’s Syndrome.

Ms. Williams is knowledgeable about the symptoms of Sjogren’s Syndrome. She stated, “If you have joint pain, dry eyes, dry mouth and feel like you wake up with a cold every morning, but you don’t have one, then you know something is wrong.” She understands that this is a chronic illness without a cure, but that treatment is available. It’s good to know that Venus Williams has come forward with her diagnosis and is helping to share information with the public. I wish her the very best.

It’s time for a Myasthenia Gravis flare up of 2011 since it’s summer and the heat and humidity are horrible. I’ve been so thankful that the Myasthenia Gravis has been at bay for a long time with just some normal symptoms. I’ve been going through a stressful time since November of 2010 when my daughter first began having some serious health issues. I thought the stress and going back and forth to her school, to the emergency room and to doctors would have done me in, but except for the normal weakness, fatigue and droopy eyelid, I’ve been pretty good.

But the flare up hit me about two weeks ago. I thought it was just going to be a few days, but as it got worse, I knew it was time to see my neurologist. My symptoms were total body weakness, difficulty walking, swallowing and talking and extreme fatigue. I also started to get the shakes – that’s when my muscles twitch even when I’m resting. I couldn’t even drive. A new symptom I had this time around was coughing every time I ate.

My neurologist knew right away that I was in a bad flare up. The drive to see him wore me out and I wasn’t even driving. I could hardly sit up in the chair and looked like a rag doll. Now I know where that term comes from! (Myasthenia Gravis is sometimes called the rag doll disease.)

My strength wasn’t that bad, but that’s nothing new. I have more problems with stamina than strength, plus the Mestinon was just kicking in as he examined me. But I wasn’t able to maintain my seated position for long, my both eyes were drooping and I was short of breath. My doctor explained that the coughing while eating was a signal that my swallowing was getting worse.

He increased the Mestinon from 120 mgs every 3 hours to 150 mgs every other dose and the Cellcept from 2500 mgs every day to 3000 mgs every day. If my symptoms worsen, I am to call him or go to the ER. If I don’t see any relief in one month, I am to call him.

Do you have a Myasthenia Gravis flare up every summer like me?

Scleroderma is a rare disease, so a health the June awareness month is a great way to share information. An autoimmune disease with treatment, but no cure, Scleroderma affects about 300,000 people in the United States.

Scleroderma means hard skin and affects the connective tissues leading to inflation, scars and thickening of skin. The most common areas of  skin that are affected are the of elbows, fingers and face. If this disease is diagnosed in its early stages, there is less damage and less serious symptoms. It is important to know the symptoms of Scleroderma because as with many autoimmune diseases, diagnosis can be difficult.

Symptoms

• Skin changes – swollen fingers and hands, puffy skin, thick patches of skin, especially on the fingers, tight skin around the hands, face or mouth. Skin may look shiny, and movement may be restricted.
• Raynaud’s phenomenon – the small blood vessels in the hands and feet are affected by cold or stress, which causes numbness, pain and/or red, blue or purple skin.
• Red spots on the fingers, palms, face, lips, or tongue.
• Loss of the skin’s ability to stretch.
• Itchy skin.
• Fingers are curled.
• Digestive problems – heartburn, GERD, or trouble swallowing food.
• Fatigue.

Types of Scleroderma

Children can develop Scleroderma and it most often Localized, which means it only affects the skin. The most common symptoms of Localized Scleroderma are Morphea, which are oval shaped skin patches that have a purple border and white middle and Linear Scleroderma, which are bands of hardened skin usually on one side of the body.

Systemic Scleroderma affects your skin, blood vessels and internal organs. It occurs suddenly and can get worse quickly within the first two years. There are subcategories of Systemic Scleroderma depending on what area of the body is affected.

Diagnosis

Blood work, biopsies and a thorough skin assessment are some of the tests done to help diagnose this disease.

Treatment

Scleroderma is treated with various types of medications depending on the area of the body or the organs affected and physical therapy. Sometime surgery is necessary.

Share the Information

Spread the word and raise awareness by sharing this post, by liking the Scleroderma Foundation page on Facebook and by sharing your story if you have been diagnosed with this disease or know someone who has.

Learn more about Scleroderma from the Scleroderma Foundation.

Fester, long time radio personality with the MJ Morning Show has been diagnosed with Myasthenia Gravis. His symptoms, which began suddenly, were droopy eyelids, double vision and difficulty swallowing. Shortly after they began, he was admitted to the hospital and in ICU.

Fester, who is known for his humor and big heart, went from feeling fine to the ICU in just a day or two.  His treatment consists of plasmapheresis now and he hopes to return to the MJ morning show soon. He was able to share a bit about what he’s learned about Myasthenia Gravis and give his fans an update on his condition on a video.

The MJ Morning Show is based out of Tampa, Florida and airs on the following radio stations:

- 93.3 FLZ (WFLZ – Tampa, FL)
- Z1077 FM (KSLZ – St. Louis, MO) [airs on a one-hour tape delay]
- 97.9 Kiss FM (WFKS – Jacksonville, FL)
- Kiss 95.1 FM (WBVD – Melbourne, FL)
- The Beach 98.9 (WBCG – Punta Gorda, FL)
- Star 94.7 (WSYR – Vero Beach, FL)

It is also available on the IHeartRadio app.

Although I’d never wish ill on anyone, the news of Fester’s Myasthenia Gravis diagnosis, has brought light to a medical condition that is very rare. If I were a betting woman, I’d say that Fester will promote information about this disease on the radio show and in other areas. I wish him well.