My Chronic Life

I was pretty amazed to see a recent video about Myasthenia Gravis featuring young people. Although I don’t believe all that they say, here’s something for you to learn from:

County governments in Florida are having a rough time budgeting money for the coming year as I’m sure most local and state governments are throughout the country. The economy is falling apart all over. Where I live there was a huge housing boom a few short years ago. We were considered to be a bedroom community because we are so close to a pretty new highway that leads to Tampa.

This area has good schools, communities, libraries, a low crime rate and was considered to be an excellent place to raise a family. Now there are houses for sale everywhere you look. The problem is those houses sit unsold for years. Too many end up in foreclosure which is ruining our property values and raising our taxes.

What does our county government propose to do to raise money? They are considering lowering the impact fees so that more new homes can be built. They believe that bringing back home building will boost the economy by producing more jobs.

What are they considering cutting? The only public transportation we have. A bus service which is used by many people who cannot drive due to disabilities. Other riders include people who are in low paying jobs and can’t afford cars or gas, the elderly who no longer drive and other people who have never driven.

Does that make any sense at all?

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.

Why not share your plans for Lupus Awareness Month or Day, which is May 10th? I know many women with Lupus and I want to help out in any way that I can to spread the news. This can help not only with more knowledge about this disease but also help to raise money for research, treatments and early diagnosis.

Please feel free to let me know if you are running a charity event of any kind. I’ll be happy to post about it here on this blog.

Lupus is a chronic illness that is autoimmune in nature. The inflammation caused by Lupus attacks many organs and systems of the body. Since this disease affects various body systems there are many symptoms which can make it difficult to diagnose. Lupus also comes and goes with episodes called “flares” or “flare ups”.

From the Mayo Clinic, here is the information on the symptoms of Lupus:

The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:

* Fatigue
* Fever
* Weight loss or gain
* Joint pain, stiffness and swelling
* Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
* Skin lesions that appear or worsen with sun exposure
* Mouth sores
* Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
* Shortness of breath
* Chest pain
* Dry eyes
* Easy bruising
* Anxiety
* Depression
* Memory loss

Since it is difficult to diagnose, but at the same time having Lupus without being treated for it can cause organ damage and other serious health problems, awareness about Lupus is vital.

You can take a screening test from the Lupus Foundation of America. Please answer these questions and talk to your doctor about the outcome.

I don’t want to be a doctor, nurse, medical tech or anyone who works in the medical field now. I was happy when I was able to work as Social Worker for a home health agency way back when, but things have changed a lot since then and we have our government and health insurance companies to thank for that.

You see when I was able to work outside my home, Medicare actually paid for medical care that allowed a doctor to stay in the examining room with you for a while. S/He would be able to ask you a lot of questions about your health condition. S/He would be able to help you prevent medical conditions from occurring. You could stay in the hospital when you had surgery, especially if you were elderly and frail and had no one to care for you at home. You could get home health care if you lived alone and couldn’t for any reason, do your own insulin injections. The agency could provide a home health aid for you to help you with your personal care if you needed assistance, a social worker if you were depressed or dealing with stress and/or a nurse to check on your wound care id you were diabetic, or if you needed IV treatment and were too sick to go out daily to get it from a clinic.

Now you’re lucky if you spend more than 10 minutes with your doctor. There’s more out-patient surgeries that used to be done in hospital. If you can’t bathe yourself, too bad, you can either try sponge baths, hire someone or not bathe. If you’re sick and need IV treatments you need to find transportation to the clinic that opens at 6AM for patients. So sorry if you’re weak from the infection.

It’s a sad state of how things are now. It must an awful feeling for many in the medical field who are really concerned about patient care to know that their hands are tied in so many things they want to do.

I’m blessed because I have doctors that care and go above and beyond and because of the type of health insurance I have. I see how difficult it is for others especially the elderly, people without insurance, people with multiple health problems and those who have Medicare or a Medicare HMO and for anyone who has Medicaid.

I pray that our next president will do something to make changes in health care in the US.