My Chronic Life

With the sudden passing of Tim Russert on June 13th there has been a lot of talk and news about heart health. Understanding the heart, how it functions, heart diseases and treatments and heart conditions can help any of us who are worried about our own or a loved one’s health.

I have Mitral Valve Prolapse. This is a common heart condition. My cardioliogist has explained it to me and I am screened for it every year. Using the Heart Library and viewing videos especially the video about a healthy heart has eased my mind a great deal.

Sharing this site with others can provide information and support that people who may soon be undergoing open heart surgery or other procedures or who have just been diagnosed with some type of cardiac problem. Seeing is believing and the videos help you to understand and learn.

When someone has difficulty with speech, reading, writing and understanding others they have a communication disorder called Aphasia. All symptoms do not have to be involved but the language disorder does. Most people that have Aphasia get it from a stroke. Some from a head injury or neurological disorder.

People with Aphasia have normal intelligence. There is a disruption with the part of the brain that controls speech not their ability to process information.

From the National Aphasia Association (NAA), here are some tips on how to communicate with a person who has this disorder:

* Make sure you have the person’s attention before communicating.
* During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.
* Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don’t need to speak louder than normal but do emphasize key words. Don’t talk down to the person with aphasia.
* Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
* Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.
* Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
* Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.
* Encourage them to be as independent as possible. Avoid being overprotective.
* Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day to day details.

The NAA is one of a number of non-profit groups that help people with Aphasia. These groups provide information, support, education for patients, family and medical personnel, and raise money for awareness and research. They can always make use of donations. People who feel strongly about these types of medical non-profit groups do many things to raise money. Some make monetary donations, seek donations from family and friends, leave money or stock in their wills to these groups, make donations on behalf of loved ones, etc. I’ve known people who have bequeathed property like Winter Park real estate to organizations that they feel do what is needed to find a cure or treatment.

When I’m in a flare my brain is much more mushy than it normally is. Brain Fog is my middle name all of the time but with my extra fatigue, new and increased meds, low potassium and who knows what else, I can think of something one second and forget it the next. I have to have everything written down and have the list with me. I’ve called my older daughter about things we talked about already. I’ve forgotten about my Aunt’s birthday. I forgot to tell my youngest daughter how proud I am of her on her last day of school. The list goes on.

Trying to fight this depression, I’m finding that laughing at myself again is very helpful. Having a lot to laugh at is even more helpful. I’ve been watching funny movies. I’ve been thinking of ways to torture my doctors. I’m researching cures like inserting flash memory into my brain, using sponges for the bottom of my feet to remove toxins and using candles to remove wax from my ears. It’s amazing how many scams are out there online. But they sure are fun to read about, especially the testimonials.

Beware of them and of me, at least for a while!

When I was really sick a few years ago, I had the unfortunate need to be taken to the hospital by ambulance on a number of occasions. One of them was a real scare. I don’t remember much of that time, but the other times I do remember how kind and caring the EMT’s were.

I would feel foolish needing to call them but when they would come to get me and knew what my medical conditions were they made me feel that it was a smart thing that they were called. They understood the need for emergency care. They put me at ease and took care of me right away.

Their professionalism along with their kindness made me proud of the work they do and the extensive emergency first responder training they go through.

National Paramedic Institute provides online classes for EMT’s, First Responders and Paramedics. There are classes that can be used toward Continuing Eduction (CE) credits. There is a live demo of the video that is used for the courses. I’d feel confident knowing that if I needed an EMT again (I pray that I don’t) and they were trained by NPI they’d know their stuff.

Scleroderma is a chronic illness which is in the autoimmune category. The word is from the Greek words, “sclero” meaning hard and “derma” meaning skin.

Symptoms of Scleroderma vary greatly. Here are just a few:

• Thickening and swelling of the skin at the end of the fingers
• Raynaud’s phenomenon
• Heartburn and difficulty swallowing
• Shortness of breath
• Polymyositis

Scleroderma can be limited to the fingers or hands only. It can also cover large areas of skin. It can be systemic and damage organs such as the kidneys, esophagus, intestines and lungs.

Children are also affected by this disease. They have either Localized Scleroderma, which is the most common form or Systemic. There are many treatment approaches for both children and adults. This is often a team approach with various specialties treating a patient.

Please visit the Scleroderma Foundation for more information, to learn about recent research and how to donate your time or money.

I had just started doing a small exercise program where I’d walk as much as I could. I can’t walk outdoors so I’d walk around my house and in stores. I’d find excuses to walk. I was doing very well and knowing that there was no need for diet pills to lose some extra weight.

I also know that exercise is so important to help with arthritis and fibromyalgia symptoms and to keep my digestive process active. It also makes me feel better about myself. I was thinking of buying a Wii Fit to keep me on track and to get a start of some yoga too.

Now with everything that’s going on with me health wise, my walking has been put on hold.  I sure hope it won’t be long until I can get moving around again. I try to do stretching so that I at least am moving around a bit.