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A Letter to the Autoimmune Community #A4Amonth

Posted by Connie on Monday, August 27th, 2012 at 10:02 pm and is filed under Advocate, Autoimmune Disease.
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Prompt: Write a letter to your community and share a story of your own with them. Extra points if you record yourself reading the letter telegram-style!

Dear Autoimmune Community,

I hope that this letter finds you well. As much as I don’t want to share the autoimmune conditions with you, I’m grateful for your support and proud to be a member of such a brave and optimistic community.

I felt the need to share this story with you so that you may find some encouragement. As you know I was diagnosed with the first autoimmune disease over 20 years ago. After that diagnosis, others followed. When I received the diagnosis of Myasthenia Gravis at the age of 40 (9 years ago), I went into a deep depression. I was blind to it and chalked it up to fatigue and weakness.

Thankfully, a family member talked to me without holding anything back and without fear that I would get angry with her. She shared some examples of my behavior and she knew that I indeed was weak and tired, but that more of my symptoms mimicked depression. She suggested that I see my neurologist and find a psychiatrist.

Sad WomanAt first I was hurt and put her into the category of people who didn’t understand. After taking about a week to think about it, I began to realize that she might be right. I did what she suggested and was diagnosed with depression and anxiety. I began treatment with medication, talk therapy with the doctor and therapy with a counselor. The clouds were parting and glimpse of sun were coming through.

It took some time, but I began to feel much more content. To this day, I continue treatment and am proactive when my emotions get the best of me. Doses of medications may need to be changed or new meds may be started. I might need to add more counseling sessions. But the difference from how I felt 9 years ago compared to now is astounding.

Please don’t think that I believe your symptoms aren’t real. All I ask is that you learn about symptoms of depression and anxiety or listen if someone you love suggests you may have emotional problems. Your quality of life can improve.

 

My best,

Connie

This is the final day of WEGO Health’s Advocating for Another Blog Carnival.

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Being A Health Activist is Challenging #A4Amonth

Posted by Connie on Thursday, August 23rd, 2012 at 11:32 pm and is filed under Advocate, Autoimmune Disease.
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Prompt: Leading a community isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a Health Activist.

Whoa, I don’t lead the Autoimmune Community, but I do advocate for it. And yes, it’s challenging, but so rewarding too. Please don’t take these as complaints. This is a reality check though.

As someone who has five autoimmune diseases (Ulcerative Colitis, Fibromyalgia, Sjogren’s Syndrome, Myasthenia Gravis and Rheumatoid Arthritis), I’m tired a lot of the time and hurting most of the time. I’m used to it and have learned to deal with it. When it comes to being an advocate – talking to someone online or on the phone that has questions or is feeling down, writing blog posts like this one or attending a meeting – there are times that I want to go to bed and zone out. My body is screaming for sleep. I need to do some deep breathing to get a handle on the pain. I am in no way a martyr. There are lots more people who do much more than me, but this is how I feel sometimes. My own needs get in the way and I don’t like it.

I get angry when people refuse to listen to facts. People still believe that because you look good, there’s nothing wrong with you. Listen up! Just because we can get out of bed, get dressed and put a smile on our faces doesn’t mean that our pain level isn’t sky high. No one knows what goes on behind closed doors. It may take hours to get ready and that smile is real, but it can be because we’re finally out around friends and doing something fun, or that smile is plastered on. Then there are people who believe that we did something to deserve being sick. I could go on and on, but I’d rather dwell on those who support us and understand.

It’s easy to feel hopeless when very little in the way of new treatments or dare I say “cure” comes around. When I’m explaining the facts or talking someone down who feels like giving up, that tiny little voice sneaks up and says, “there’s not much to offer them”. Be quiet! There’s so much to offer – beautiful flowers and clouds, hugs from children, the wonder of the written word, the kindness of strangers. Live each day and look for magnificence.

Just like in life, there are good days and bad, good moments and bad, when you advocate for a community.

I’m taking part in the WEGO Health blog carnival. To learn more about the Advocating for Another Blog Carnival visit http://bit.ly/A4Amonth.

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Third Person Health Story Post #HAWMC

Posted by Connie on Wednesday, April 25th, 2012 at 11:17 am and is filed under Blogging, Chronic Illness.
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Prompt: Third person post. Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc.) as you can. Don’t use “I” or “me” unless you include dialogue.

The nurse was preoccupied with beeping monitors, tangled IV tubings and deciphering labs. The unshaven husband was by the patient’s bedside. He’d sit down for a few minutes then suddenly feel the need to move around, to break free of his fear. Up out of his seat, he’d walk around the room, looking at the same framed picture of an idyllic lake scene, switching the TV channels and stretch his aching back. He would refrain  from asking the nurse when she expected his wife to wake up again, although that’s all he could think about.

Not the type to scare easily, he was startled when the noise of the commentator’s voice came on the TV that there was breaking news. “Now what?” he muttered under his breath. Shortly, the nurse came to look at what was going on.

A scene of New York City, with crowds of people in the streets appeared on the screen. It was easy to be afraid without a word being said. The sight was all too familiar. The voices from the TV blurted that there was an extensive blackout with no known cause. The husband finally spoke to the nurse in a questioning voice, “Terrorists. That’s all we need now.” She patted him on the arm. “We’re safe.”

A movement from the bed was heard. First an arm moved, and then the patient’s eyes were opening and shutting. The nurse spoke quietly, “You can keep your eyes closed if it’s more comfortable. Your husband is here and you’re doing just fine.”

“I can’t see! Why is it so dark?” More squirming and tugging on the IV, not intended to do harm, but there was a loss of understanding. Fear was overwhelming the patient. The husband caressed her face, told her the surgery was done. She was fine. Slowly the fidgeting ceased.

A few hours passed and the patient attempted to speak, but it sounded like she was drunk, all slurred and sloppy. The nurse explained that the anesthesia and the pain medicine were making it difficult to talk. The patient tried to open her eyes again and when she did, everything was a blur. She began to cry. It was just her and the nurse and no matter what the nurse said, she couldn’t stop crying.

The patient was thinking that she had this surgery to clear up her double vision, to help her keep her eyes open, to help make her speech clearer. And it didn’t work.

Side note: This is the story of the day I had my thymus removed in a surgery called a thymectomy. It is done to help reduce symptoms of Myasthenia Gravis. I did end up speaking much better and my droopy eye and double vision improved greatly. I spent about 10 days in the hospital. Full recovery took about 3 months.

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Chronic Illness Quotation #HAWMC

Posted by Connie on Monday, April 2nd, 2012 at 10:55 pm and is filed under Chronic Illness.
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Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

One of my favorite chronic illness quotes is, “My disabling chronic illness is more real than your imaginary medical expertise.”

Chronic Illness Quote

When I was first diagnosed with Myasthenia Gravis, I was terribly ill. It began with a dropping eyelid which quickly led to generalized muscle weakness and fatigue. I went from a vital woman with two children, working a full time job and part time jobs, volunteering, taking care of my family and home and socializing to being almost bed bound.

Family, friends, people from church, parents of my younger daughter all reached out to help because my household was falling apart. I was so grateful. My husband and I were busy with doctors, medical tests, and trying to find the right treatment for me. And we were in a state of shock. Once we found out that I needed a serious surgery – a thymectomy (the removal of my thymus gland), we got a second opinion, did a lot of research and took a few weeks to think it over, the unwanted advice started to come in.

People who had no idea what Myasthenia Gravis was, all of a sudden knew someone who was cured by drinking this juice or taking that vitamin. Why not try acupuncture?  You need your thymus gland to fight off infections. Come to this aromatheraphy session. Visit my chiropracter.

I decided on the surgery since time was of the essence. The thymus gland is close to the heart so it’s like having open heart surgery (the thymectomy that I had) and recovery was long and difficult. Most of my family and friends were understanding, but some took it upon themselves to have that “see, I told you” moment they were waiting for when they saw how weak I was. Of course, after this type of surgery, the Myasthenia Gravis was worse than ever, plus I developed sinus tachycardia. But those people who wanted to be right, wouldn’t listen to reason.

After about six months, I was fully recovered and on a drug regime that kept the serious symptoms at bay. The surgery was not meant to cure me, but to alleviate symptoms and reduce the risk of getting worse, like needing a trach, requiring plasmapharesis, etc. But not being cured, kept those “medical experts” happy and more advice came in. Soon, people were telling me it was in my head, that I was depressed, that I was lazy. And I wished that they could live a few hours in my body, not to get back at them, but for them to understand.

Sadly those people didn’t get it. They are no longer in my life. If I run across people now who try to dictate what I should be doing medically, I won’t get close to them. In the end, I’ve learned who my true friends are.

If someone is sick, ask if they want advice first. They may have all they can handle. The most important thing you can do for someone you care about, is to be there for them. Listening is sometimes the best medicine.

 

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Myasthenia Gravis Awareness Month 2011

Posted by Connie on Sunday, June 5th, 2011 at 5:49 pm and is filed under Advocacy, Chronic Illness, DisABILITY Advocate, Health Information.
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June is Myasthenia Gravis Awareness month and for 2011, the  main focus is “Uniting for a Cure… Together we are Stronger.” The Myasthenia Gravis Foundation of America is asking us to help share information about this disease and to help find better treatment and ultimately a cure.

Myasthenia Gravis Awareness

As someone who has had Myasthenia Gravis for 8 years, I’m always willing to do what I can to help this organization. Plus, since I know that even medical personnel often do not know what MG is, awareness is very important. In fact it can save lives. When someone with MG goes into a crisis, they may not be able to speak or let anyone know what is happening with them. Everyone from first responders to surgeons needs to recognize the symptoms of Myasthenia Gravis, how to treat someone in crisis and what medications can help or harm.

I’ve written about what my life is like with Myasthenia Gravis. It gives you a picture of some symptoms people may experience. I hope that you’ll take the time to read it.

The Myasthenia Gravis Foundation of America describes MG as:

Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms, legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue. Currently, there is no cure for MG, but there are effective treatments.

My first symptom of having MG was a droopy eyelid, which quickly moved to weakness in other parts of my body. I have had a thymectomy within the first 6 months of being diagnosed. I take Mestinon and Cellcept and am seen by a neurologist who specializes in MG through the MDA. I have good days and bad days and have learned my limits. Some days I need to use a scooter to get around, some days I can walk around a shopping mall. The heat of Florida does a number on me, so I stay indoors often, or go out in the evening.

MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment options and provide information and support to people with myasthenia gravis through research, education, community programs and advocacy.

Please support Myasthenia Gravis Awareness Month by sharing this post, by volunteering, by making a donation, and by being an advocate.

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Swine Flu Shot Chronic Illness

Posted by Connie on Monday, November 2nd, 2009 at 12:48 am and is filed under Chronic Illness, Health Information.
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I was fortunate to get the Swine Flu shot last weekend since I have fit in the category of having a chronic illness. My husband and daughter had their shots too. My husband got his because of me and my daughter because of her age. I’m relieved to have this done as getting H1N1 is not on the top of my list along with having  Myasthenia Gravis and other autoimmune diseases.

I’m also on immunosuppressant drugs so I had no fear getting the injection. I’ve heard all the hype against it, but being put on a ventilator to breathe and my doctor being unsure if I can even handle Tamiflu, the drug to take for the Swine Flu, puts it all in perspective for me.

There were no side effects at all, just a slight discomfort where I got the shot. That only lasted a few hours. I was told not to take any medication like Tylenol as it might prevent the vaccine from working. My 1o year old daughter’s arm hurt her for more than a day, but she is getting allergy shots twice a week and her arm is sore from that.

Remember you cannot use the mist if you have a chronic illness or are taking immunosuppressant medications, so get your Swine Flu shot as soon as possible to avoid any serious health problems.

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