My Chronic Life

Having Myasthenia Gravis and living in Florida pose a huge problem. Since the temperature is often in the 80’s beginning as early as April, staying out of the heat is difficult. You see one of the things that makes MG symptoms worse is heat. Even walking outside to get into an air conditioned car can cause problems. I do try my best to remain in air conditioned buildings and cars.

Even doing that may not be enough. My neurologist tells me that just feeling that blast of heat for a few minutes can cause me to not feel well. He says that he gets more phone calls, emergency appointments and emergency room visits as the weather gets hotter.

There’s so many things that I miss doing in the “summer” in Florida. I miss the beach. If I go I have to have a place nearby where I can get cooled off quickly, so that means not using public beaches. I miss sitting taking my daughter to the park so she can play on the swing sets. I miss going for walks. I miss going to Disney World during the days in the summer.

My attitude has been and will always be though, that although there are things I can’t do, I will focus on what I can. Five years ago, I couldn’t even get out of bed. I was unable to do most anything. The MG is under control now so I’m grateful for that!

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.

I hope that we have enough insurance to cover everything that my health issues may cause. I think we do. I know we still need life insurance for me but I think that may be out of reach for us financially right now. Once a company learns about all of the medical conditions I have the fees would go sky high.

The health insurance through my husband’s company is very helpful. I also have Medicare as my secondary insurance. The deductibles have increased this year but we make them very quickly. We have some dental insurance that helps to pay for cleanings and basic dental care, so we’ve put away some money for major things like root canals and braces that our daughter will be needing soon.

We’re doing quite well with car insurance even with having a 21 year old driver. We use a company that is for military or retirees only so we save a bit with them.

We really don’t have choice with home owner’s insurance. Living in Florida we’re stuck with the state’s policy as the area where we live has had sink holes and of course the hurricanes from the past created a lack of insurers for us.

Now if I can only find health insurance that will pay me when I have flare ups, even if it’s a few pennies a day, I’d be doing quite well.

There have been some times when I can’t shut my brain off no matter how hard I try. Even medication doesn’t do the trick. I’ve felt anxiety so bad that I’ve felt like tearing off my skin. I’m no fun to be around that’s for sure! It’s an awful feeling and when it happens I pray and try my best to stay calm. If it gets really bad then it’s time to call the doctor to see if I can increase my medications.

I’ve been doing very well lately. I haven’t had any terrible anxiety attacks that my medication or other forms of easing my stress haven’t been able to handle. I’ve been doing something different lately and wanted to share this with you.

When I begin to feel anxious, before it gets out of hand, I turn off anything that is distracting. I used to believe that using the TV or the computer would help me but I’ve learned that this just adds to feeling stress. Instead I listen to music that soothes me. It can be Christian contemporary music, or instrumental relaxation music but whatever it is I listen to it on my headset. I either use a CD player or another type of electronics like my MP3 player.

I think that shutting my mind down by focusing on one thing only has helped me greatly. The ability to hear only the music or even some Bible recordings is a new venture for me. I’m thrilled that it’s been working.

Living in Florida, taking multiple medications, having fair skin and a family history of skin cancer all have me using sun block and trying to stay out of the sun as much as I can. Add to that having a diagnosis of Myasthenia Gravis, which heat can exacerbate, you’ll usually find me with with a big straw hat, going into and out of air conditioned cars, stores, homes, etc.

I’ve been using a spray sunscreen so it saves some time with applying it. Then I have a cream that I use on my face. I already have Rosacea so I really have to be careful getting any sun on my face. I look like I don’t live in Florida being so pale but that’s what I have to do.

I’m happy to be over getting pimples on top of the other skin problems I have. I remember being a young woman in my teens and twenties and not only having acne on my face but on my neck and upper back. That was much worse than being pale. I found a great dermatologist though who helped me with the best acne treatment for me. It took some time but soon I was acne free.

Some people view not having a tan as a missing out on a beauty routine but I think that I’d rather not worry about skin cancer than try to look good.

I take a nap almost every day. I have to. I can’t help it. I can’t stay awake. If I force myself I end up talking gibberish, doing things backwards and making an utter mess of my life and my family’s too.

While we were away this past week on vacation at Disney World, I really had to nap. I used my scooter to get around the parks but I still got so tired I had to sleep or I wouldn’t have been able to go out in the evenings.

My good friends came for the day with their three children and a baby that my friend babysits. We went to the Magic Kingdom for part of the day. We were there for a few hours when I started getting that melt down feeling. I didn’t want to ruin their day but I knew I wasn’t going to make it much longer. When I told them it was fine because they all wanted to go swimming at the hotel pool.

Back at the room I feel asleep on a small love seat. I was so uncomfortable, but I was so tired it didn’t matter. I could have fallen asleep in one of the baby cribs I’ve seen in the hotel rooms.

No one could believe that I slept through everyone coming back from the pool, children crying about not wanting to leave, packing up and all kinds of noise. But I did and I’m pretty proud of it

I’m still the same me but I get tired and cranky too often. I forget words and names. My voice sounds scratchy a lot of the time. I have bruises from getting injections or bumping into things. I listen to you teach me something but in a few minutes I need you to teach me again. I walk slowly. I hurt a lot all the time. I don’t go out as often as I’d like. I try not to, but I end up taking a nap almost every day.

I get short of breath from doing little things. I feel dizzy or weak sometimes and I have to sit down. I can’t walk long distances. When I say I need to take my meds, I mean it. I have trouble swallowing sometimes so I really can’t talk on the phone when I’m eating my meals. I take a long time to swallow my pills. I get frustrated, sad or angry for things you don’t understand.

But it’s still me - funny, talking too much, smiling a lot, wanting to help out, loving hugs, being odd, being myself. Thanks for sticking with me my friends! I love you for it.

I’m a co-blogger on a new blog named doWAHdiddy. This is a collective effort along with two other bloggers. This blog focuses on Working At Home, hence the WAH in the title. We write about finding, maintaining and growing a business from home.

This is a blog that is a group project from the blogging forum The Advisory Panel. I am learning so much there about blogging from some very talented people that know the real deal on blogging. It’s an honor to have been chosen to help with writing the blog. I also won a blog with keyword search and set up from the March contest. Every month there are contests for taking part in the forum, getting referrals and starting new threads. Come join us and see what we’re learning about and earning too.

Why is it that when you become chronically ill that all of your family and friends immediately become doctors and researchers? I get so sick and tired of people (most of the time, well-meaning) telling me how I can be cured or how I need to change my diet, water, cleaning supplies, etc. etc….

I know that they mean well but it really does get annoying. The worst is when people tell you that you shouldn’t listen to your doctor or take a medication that is working. Yes we know there are side effects of prescription medications, but there are side effects of eating fast food, smoking, driving without your seatbelt, etc. We don’t butt into your lives, so let us tell you when we need advice.

I don’t mind when someone finds some information and asks me if I’d like to see if, or emails me a link. The best thing to do after that though is to leave it alone, don’t ask me about it again so I won’t have to tell you that I can’t take that medication or that it’s been tried already or that I hate to eat liver! Let me do my thing. I’ll ask you if I need some ideas or help researching, OK?

 
Since I have brain fog which affects my remembering words, I’ve come to say a lot of new words to fill in the blanks. Some of them are downright funny and some are really embarrassing.

I’d love to hear about the words you use. Here are some of mine:

• Thing
• Doohickey
• Ummmm
• Whosiwhatsit
• You Know
• That
• What’s It Called