My Chronic Life

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.

IBS is Irritable Bowel Syndrome. It is important to note the word “syndrome” which means a group of symptoms. IBS affects the colon with symptoms of abdominal pain, bloating, cramping, gas, constipation or diarrhea or both.

From Mayo Clinic.com:

No one knows exactly what causes irritable bowel syndrome. The walls of the intestines are lined with layers of muscle that contract and relax as they move food from your stomach through your intestinal tract to your rectum. Normally, these muscles contract and relax in a coordinated rhythm. But if you have irritable bowel syndrome, the contractions may be stronger and last longer than normal. Food is forced through your intestines more quickly, causing gas, bloating and diarrhea. In some cases, however, the opposite occurs. Food passage slows, and stools become hard and dry.

Some researchers believe IBS is caused by changes in the nerves that control sensation or muscle contractions in the bowel. People with IBS may have a heightened sensitivity to stretching of the bowel with gas leading to pain or bloating. Others believe the central nervous system may affect the colon. And because women are twice as likely to have IBS, researchers believe that hormonal changes also play a role. Also, many women find that signs and symptoms are worse during or around their menstrual periods.

IBS is diagnosed often by your symptoms but your doctor, often a gastroenterologist may want to rule out other possible diseases by the use of tests such as a sygmoidoscopy, colonoscopy, lactose intolerance test, blood test to rule out celiac disease or a CT scan of your abdomen.

There is no cure for IBS but there are treatments that are often used on a trial basis. In other words, what works for one person, may not work for another. Diet changes are one of the main things used to help control IBS. Sometimes there are foods that trigger this syndrome. A food diary can be used to determine what may cause problems and then those foods can be avoided. Also eating smaller meals should help too.

There are some prescription medications that doctors may try as well as over the counter laxatives, fiber supplements and anti-diarrheal medications. The use of OTC’s should be discussed with your doctor and may also be used on a trial basis. Antidepressants are also prescribed. Either a tricyclic antidepressant or a selective serotonin reuptake inhibitor (SSRI) can work treat IBS. These medications not only help relieve the depression that may accompany a diagnosis of this syndrome but they can help the nerves in your colon work as they should.

Relieving stress is often another way to help reduce symptoms. A very important note here, stress does not cause IBS, but it can exacerbate symptoms. If you require help with stress counseling may be something to look into.

Please visit the IBS Research and Treatment Act link on About IBS.org. Let your voice be heard by contacting your congress person.

April is Autism Awareness month. Autism is known as a “spectrum disorder” because it affects people differently and in different degrees. This is a treatable disease so early detection is imperative. Symptoms usually begin in the first three years of life. From the Autism Society of America:

Here are some signs to look for in the children in your life:

* Lack of or delay in spoken language
* Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
* Little or no eye contact
* Lack of interest in peer relationships
* Lack of spontaneous or make-believe play
* Persistent fixation on parts of objects

There are different types of Autism. Some of the more common known forms are Asperger’s and Autism Disorder. Whatever the diagnosis early treatment is vital.

I’ve had the honor to be a guest blogger on Fighting Fatigue, which is an all inclusive health blog. This blog began to be exclusively about Chronic Fatigue Syndrome, Fibromyalgia and Interstitial Cystitis. As Sandy continued to write she expanded her subjects to include other health issues. She is an advocate, pure and simple. She goes through life everyday with symptoms that are difficult to live with, yet she tries to help others through her informative, empathic writing.

My guest blogging post is about Sjogren’s Symptom. Sandy had previously provided many links to websites, support groups, blogs and books. Her lists are comprehensive. A lot of research goes into each post she writes. Please take the time to visit my post and her entire blog.

This is a continuing series which began with this post. Looking at the diagnosis of a Chronic Illness in the framework of grief we’ll begin with the first stage called “Denial”. Please note that these stages do not have to happen in order, that people may not go through every stage and that people may waffle back and forth between stages.

Feeling denial may occur when a person is first diagnosed with a medical condition that they are told will last all of their lives and for which there is no cure. Denial may also occur if a person’s medical condition worsens, if he is diagnosed with other chronic illnesses or other medical problems, or if she is told that her condition has become terminal.

Denial is acted out in different ways. Sometimes we deny that we are sick at all. This is especially easy if we look healthy, which is common with some chronic illnesses like Fibromyalgia, Heart Disease, Diabetes and CFS. We can also be in denial concerning our need to care for ourselves physically, the need to prepare for the future and the lifestyle changes we may need to make.

For some people not getting over denial can cause them to not progress psychologically to reach the stage of acceptance. They may go along with their doctor’s treatment and even have surgery but not face what is really happening. This is like a parent whose child is having a large party. You find a hall for the party. You hire a caterer. You do all the work for the party but you never send out the first communion invitations. No one can attend the party.

Without getting over the denial no one can support you in a manner you need. No one can reach out to you or talk to you about your feelings. It’s the proverbial white elephant in the room. It makes others uneasy and you too.

So how do we conquer denial? Remember that moving towards acceptance means that you may go through sadness, anger and fear. But this process is so important. You will gain so much. You may need to be selfish for a while and this is OK. You are the person most affected by a life altering medical diagnosis. Take the time you need and let your loved ones know that this is what you need. They will be hurting of course so I don’t mean that you shut them out completely.

It took me time, tears, facing my fears, a lot of prayer and seeking the counsel of my Pastor and a therapist. You will find your own way. Just allow it to happen. If you are having difficulty there is nothing wrong in seeking help. You are not alone.

If there’s a way for me to promote my favorite non-profit, DOUA I do it. I search the internet high and low for places to spread the word about this fine organization. For example on this post I was able to share information on DOUA. When I read about the latest Blog Battle Royale held by Izea I knew this was a great opportunity to not only support the Disabled Online Users Association but a chance to raise some very needed funds too.

My post on DOUA led to new members joining as students. That’s another goal of mine - to inform people who need the services of this non-profit. I also have a link to it on my blogrolls here and on my other blog. One of my goals for this blog is to be an advocate for people with disABILITIES. Providing this resource fits in perfectly with my blog’s theme.

DOUA is an organization for people with any type of disABILITY. It is totally free. The goal is to teach people to use the internet to earn money, especially by selling on eBay. I’ve been fortunate enough to find it at a time when I was at my lowest, feeling like I had lost my ability to do anything worthwhile. I was told I could no longer work and I was almost homebound.

The Disabled Online Users Association gave me the tools I needed to sell items on eBay and to gain back my self-confidence. In their training center I got support and made friends. I am now a mentor at DOUA. I am able to help others who are starting out. I also attempt to find volunteers and sponsors. So being a part of my first Blog Battle Royale can accomplish many things.

To make the mission of DOUA easy to understand, here’s a quote from Marjie Smith, Founder and Executive Director, “Our goal at DOUA is to help the differently-abled become self-sufficient and independent. If you’re disabled and would like to start your own online business, we can help.”

I posted a video but little else this morning about Brian Sterner, the man who is a quadripalegic and was abused in a Tampa Prison. Now that I’m feeling a little better I wanted to take the time to write about this utterly disgusting act committed by a Sheriff’s Deputy.

Just to review, Brian Sterner was arrested on January 29th for a traffic violation. He is paralyzed from the waist down and has limited mobility of his arms and hands also. He is able to drive. After being brought into the Orient Jail in Tampa, Florida he was asked to stand up while being booked. When he said that he couldn’t he was dumped out of his wheelchair onto the floor. This was caught on surveillence video and has been seen around the world on TV and on the internet.

Just today Hillsborough County deputy Charlette Marshall-Jones, 44 was charged with abusing a disabled person. Sheriff David Gee apologized to Mr. Sterner personally and has placed Sgt. Gary Hinson, 51, Cpl. Steven Dickey, 45 and Cpl. Decondra Williams, 36 on administrative leave pending an investigation.

I hope that any of the deputies involved will be charged and/or terminated from their positions. I did see a video on one of the local news stations that showed a deputy who saw the incident walk away with a smile on his face. He was not seen in the beginning of the video where this tragedy takes place. He walks very close to the camera and his face is visible.

I’ve read that all bookings of persons with disabilities are going to be viewed to determine if other acts of abuse or neglect have taken place. I’m grateful for Hillsborough Sherrif Gee has acted swiftly in this case. His apology to Mr. Sterner and his speaking out to the media has made somewhat of a dent in the public disgrace that now hangs over the department.

Please let’s make some headway for Mr. Sterner who has suffered from this incident. Post about this on your blog. Share the video. We can make a difference by stating that we will not allow people with disabilities to be treated with such cruelty.