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?