My Chronic Life

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.

I learned that one of the symptoms of hypokalemia is depression. I’m not feeling so bad about feeling so bad now. Seriously this depression is getting to be annoying. I try to get myself out of it, but that’s like me trying to wish myself to become a geek and know things like msql databases, micro sd cards, css and Plurking.

This kind of depression is only going to be cured by me picking up the phone to call my Psychiatrist to make an appointment. He may increase the Cymbalata or add something. But that takes effort that I don’t have, plus it means another doctor visit, which I’m avoiding like the plague.

I know I should do it and I probably will when I get to the point of not being able to get out of bed. Just kidding, really.

I’m still going through the low potassium which is called hypokalemia.  Having multiple chronic illnesses especially Myasthenia Gravis makes this a pretty serious condition for me. Low potassium levels cause fatigue which I already have (from Fibromyalgia and Sjogren’s Syndrome) and muscle weakness which I already have (from Myasthenia Gravis). I’m having some pretty bad depression, sleepiness and now am getting numbness in my legs and toes.

I’m sick of being sick!

I’m in one of those funks where I’m having trouble feeling positive about my health issues which translates into feeling sad, frustrated and angry. I’m also feeling guilty too because I haven’t been doing much of being a parent to my daughter. I spend too much time sleeping and feeling like a zombie than to feel capable of really being there for her.

It’s times like this when I think back to what my life was like before I was sick. I even dream about it. I catch small memories of my life like they’re in picture frames as a wife and mom who worked, took care of my children, my house, cooked homemade meals every day and volunteered for tons of things.

I was the mom who was there at school for all of the special events. I was the mom who could take care of a toddler and a teenager. I know that even if this flare doesn’t get better I’ll find ways to handle my life. But it’s hard to admit that I’m so sick again.

Remember getting those back check ups as a child and teenager, where you bent over and a doctor would feel your spine? He or she was checking for Scoliosis. These types of screenings have helped improve the number of diagnoses of this spinal disorder allowing for treatment at an early age.

According to the National Scoliosis Foundation about 6 million people in the United States have a diagnosis of Scoliosis. Most people have a mild curvature of the spine (under 20 degrees). They do not usually require treatment expect for pain and physical therapy to learn how to strengthen the stomach and back muscles and to improve posture.

Screening should continue on a life long basis for any form of Scoliosis be it mild, moderate or severe. The amount of time between screenings depends on the many factors including the severity of the pain and the involvement of other parts of the body. For example a person who has a curvature that is less than 20 degrees and has no other problems may only require screening every five years. A person with 40% curvature who has had surgery may require yearly screening.

Many people, my daughter included have mild Scoliosis and live normal and healthy lives. They may need pain medications if they use their muscles the wrong way, sit on some hard teak furniture or stop doing their prescribed exercises. But other than that, there is normally no problem.

June is Myasthenia Gravis Awareness month. This is very important month for me as I have had this rare neuromuscular disease for a little over five years now.

Myasthenia Gravis or MG means “grave weakness”. It is an automimmune disease that affects the voluntary muscles of the body. The most common symptom of MG is ptosis which is a drooping eyelid or eyelids. That is how MG started with me. It can also cause double vision and other visual problems. For many people this is the extent of what they will have as MG symptoms. This is occular MG.

For others like me, other parts of the body are affected. This is then called generalized Myasthenia Gravis. Facial, neck, arm, trunk and the muscles that control chewing, swallowing and even breathing can be affected. I have had all of these symptoms but the most problematic only occur rarely. I also have general muscle weakness, fatigue and poor stamina.

I am doing what I can to promote this rare disease because it is believed that there are people that have it but are not properly diagnosed. Because there are treatments that work, it is so important to see your doctor if you have any symptoms listed here.

I’m promoting this on my blogs, website, Squidoo lenses, on Facebook and by writing letters and shipping boxes of information from the Myasthenia Gravis Foundation of America. Please help spread the word about MG.

May is Asthma and Allergy Awareness Month. May 6th was the 10th year anniversary of World Asthma Day.

May is peak allergy season for most of the United States and the Asthma and Allergy Foundation of America (AAFA) is again leading the country in this month’s education, outreach and attempts to gain funding for its programs. You can use their site to download educational material, to get a pollen count according to your zip code, find a support group, learn how to set up a plan for your child at school if she or he has asthma or allergies, including food allergies and make a donation.

If you have a severe allergy that can lead to anaphylactic shock please wear some type of medical alert bracelet or necklace. Be sure to inform all doctors, your local EMS and family and friends. Carry injectable epinephrine which is available by prescription. You can go into shock in minutes and not be able to speak.

My husband and his brother and sister are all highly allergic to bee and wasp stings. They have a severe reaction. My husband always carries an Epi-Pen. My older daughter is hypersensitive to dairy. She cannot eat anything that contains dairy and has to eat specially prepared food if eating in a restaurant. My youngest daughter is allergic to mold, pollen, dust, many trees and plants. Both of my daughters had asthma, but grew out of it.

My youngest has a follow-up appointment with her Allergist as she is not responding well to her current medications. I wish that I could use gps fleet tracking for all of the things she’s allergic to and help her to avoid them!

Asthma and Allergies are very serious health conditions that can be deadly. My children were very fortunate to outgrow asthma. Many children do not.

I’ve been very weak and sleepy for over a week now, but it’s been much worse these last few days. I call it feeling like a rag doll. These are the symptoms I get from Myasthenia Gravis. I can’t tell you how many hours I sleep, or even how when I wake up I end up falling asleep again. I can’t even fight it.

It is a terrible feeling. The thing that upsets me the most is not being aware of what’s going on around me. My poor daughter has been pretty much without a mother for the last few weeks. I drive her to and from school, barely. But as for anything else, she’s on her own. My husband of course has his full time job and then another one when he gets home. He feels as if he’s going round and round on fitness equipment, like a treadmill and not getting anywhere.

I’m hoping that these symptoms get better soon so I can get back to living the somewhat normal life I’ve been.