My Chronic Life

Hubby is walking away from me with a look of disgust on his face. He just finished telling me that I need to get to bed early. He knows that I’m worried about my appointment tomorrow with the Kidney specialist. He knows I didn’t sleep last night at all and so I slept in today plus took a nap. He knows I’ve been sitting at the computer too long this evening.

I know he’s right on every count, but do I listen? I’m here posting on my blog instead of getting ready for bed. I’m as stubborn as an ox, a ram, a donkey.

But being stubborn when you have chronic autoimmune diseases and complications is a good thing. It keeps me from giving up when times are tough. It keeps me searching for good doctors when I know the doctor I have isn’t helping me. It keeps me researching my symptoms and being assertive with my medical care.

Those of us who are in the chronic illness group need to be stubborn at times.

Am I the only one who is relatively young (45) and has gone through a lot of medical issues that have led to my body changing in ways I never expected? Pregnancy was tough enough. I was very young for my first pregnancy, only 22 and had never been over 100 lbs. When I gained 36 lbs and then lost all but 10 of them about 6 months after having my daughter I couldn’t believe how different my body looked. Some changes were good but a lot were bad.

I went through a few miscarriages too and even though I was pregnant for a short time, my tummy got bigger and losing that weight quickly did a number on my stomach. My second pregnancy at a much later age didn’t help either.

Losing the ability to be as active as I was before and even being pretty much bed bound for about 2 years, I gained a lot of weight after being diagnosed with Myasthenia Gravis, Fibromyalgia, Sjogren’s Syndrome and then Rheumatoid Arthritis.

I also have a long scar in the middle of my chest from having a Thymectomy. I’m shocked to see how much my body has changed. I have trouble finding clothes that I think I look good wearing, and forget about lingerie! When I see a website like Shirley of Hollywood I think there’s no way I’d wear anything like that ever again. Now if you asked my husband, he’d say go out and buy 2 of everything.

I do think having a negative body image is something that women go through most of their lives. Add unwanted and unexpected physical changes due to pregnancy and chronic illness to this and you have a recipe for problems.

Working on my body image is something on my list of things to do. I have so much physical stuff happening that this keeps getting pushed to the bottom of a very long list.

image courtesy of Virginia State Universtiy (Virginia Cooperative Extension)

I’ve met some people online who are chronically ill or have a disABILITY and have either learned a new craft or continue doing some type of craft to help them feel emotionally and mentally healthy. Having a creative outlet enables some to feel more in control of their negative feelings about being sick. I am not creative at all. I can’t sew, draw, knit, crochet, paint, even write well anymore. So I look to others who have this ability and celebrate for their accomplishments.

My friend Rachel is an artist who is a photographer. She also draws, paints and writes poetry. She also has ME/CFS. Her blog is RachelCreative. Another friend Annabelle who also has ME/CFS makes handmade baskets. You can see her items on her blog.

Of course blogging can be considered a creative outlet! I just thought of that. There are many different crafts that people are into. Some I’m just learning about. Did you know that people make cattle supplies, fishing lures and even stained glass?

One of these days I may learn something new to do as long as it’s something that turns out decent enough to look at!

photo credit: Sunflower Rag Basket by Annabelle

With my ongoing health problems and worsening fatigue and weakness I find myself in the position of needing help with my everyday things like cooking, laundry, cleaning and driving. This is not only disappointing to me but very frustrating to my feeling of independence.

On Monday I’ll be visiting a Nephrologist, as you can read about in my blog post on Brain Foggles about needing to see another specialist. I see this as a step in the right direction so that hopefully a reason can be learned for the Hypokalemia. But in the mean time I have been coping with this major change in my regular life.

Knowing that I can’t do the simple things without getting tired out, like getting a load of laundry out the dryer, cleaningbar faucets, driving a few blocks or going shopping is very disappointing. I’m doing my best to work on being positive and keeping focused on getting better.

Quoting Oliver Twist, “Please Sir, I want some more.” Some more what? you’re asking. More energy, working brain cells, potassium. I want some more common sense from my doctors. I want some more of my old assertiveness and less tears and sadness. I want more ability to do the things I used to do. I want a supercharger that will enable me to get those things done and not fall asleep after I take a shower because I’m worn out.

I just want to feel better, please.

Here’s the deal… I’m going through some serious health issues right now. I have Hypokalemia which is low Potassium. I’ve been on all types of Potassium medications and have been eating high Potassium foods. My blood tests keep coming back with lower Potassium levels each time I have it checked.

My doctor put me on what I thought was a new medication last week and I’m scheduled for another blood test on Friday. I just figured out that what was thought to be new is just a different form of the same medication.

I also learned that my Primary Care Physician who’s handling all of this is on vacation - for six weeks. I don’t know if she’s on a cruise, in the Outer Banks, in a jungle where there’s no phone service, but she’s gone.

Another doctor that I haven’t met and doesn’t know me is taking over for her. He’s the one that prescribed the medication and ordered the blood test. I’m so angry right now I could spit.

How do you think my doctor should have handled this situation? How long does your doctor go on vacation? Does he or she let you know in advance, especially if you’re in the middle of a serious health situation?

With the sudden passing of Tim Russert on June 13th there has been a lot of talk and news about heart health. Understanding the heart, how it functions, heart diseases and treatments and heart conditions can help any of us who are worried about our own or a loved one’s health.

I have Mitral Valve Prolapse. This is a common heart condition. My cardioliogist has explained it to me and I am screened for it every year. Using the Heart Library and viewing videos especially the video about a healthy heart has eased my mind a great deal.

Sharing this site with others can provide information and support that people who may soon be undergoing open heart surgery or other procedures or who have just been diagnosed with some type of cardiac problem. Seeing is believing and the videos help you to understand and learn.

When someone has difficulty with speech, reading, writing and understanding others they have a communication disorder called Aphasia. All symptoms do not have to be involved but the language disorder does. Most people that have Aphasia get it from a stroke. Some from a head injury or neurological disorder.

People with Aphasia have normal intelligence. There is a disruption with the part of the brain that controls speech not their ability to process information.

From the National Aphasia Association (NAA), here are some tips on how to communicate with a person who has this disorder:

* Make sure you have the person’s attention before communicating.
* During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.
* Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don’t need to speak louder than normal but do emphasize key words. Don’t talk down to the person with aphasia.
* Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
* Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.
* Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
* Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.
* Encourage them to be as independent as possible. Avoid being overprotective.
* Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day to day details.

The NAA is one of a number of non-profit groups that help people with Aphasia. These groups provide information, support, education for patients, family and medical personnel, and raise money for awareness and research. They can always make use of donations. People who feel strongly about these types of medical non-profit groups do many things to raise money. Some make monetary donations, seek donations from family and friends, leave money or stock in their wills to these groups, make donations on behalf of loved ones, etc. I’ve known people who have bequeathed property like Winter Park real estate to organizations that they feel do what is needed to find a cure or treatment.

When I’m in a flare my brain is much more mushy than it normally is. Brain Fog is my middle name all of the time but with my extra fatigue, new and increased meds, low potassium and who knows what else, I can think of something one second and forget it the next. I have to have everything written down and have the list with me. I’ve called my older daughter about things we talked about already. I’ve forgotten about my Aunt’s birthday. I forgot to tell my youngest daughter how proud I am of her on her last day of school. The list goes on.

Trying to fight this depression, I’m finding that laughing at myself again is very helpful. Having a lot to laugh at is even more helpful. I’ve been watching funny movies. I’ve been thinking of ways to torture my doctors. I’m researching cures like inserting flash memory into my brain, using sponges for the bottom of my feet to remove toxins and using candles to remove wax from my ears. It’s amazing how many scams are out there online. But they sure are fun to read about, especially the testimonials.

Beware of them and of me, at least for a while!

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.