My Chronic Life

Medical advice, unwanted, uneducated, annoying, from kind people who care but are driving me nuts - what do I do about it?

I’ve been so frustrated and yes cranky, very cranky and on edge. My emotions are all over the place. This period of not knowing what is wrong with me is making me angry. This sleepiness, inability to go out, drive, move around and now the pain is getting to me real bad.

I don’t want to snap at people who mean well. I’ve shared with them that I’m waiting to hear from the Kidney Specialist. I’ve had tests done and have started some a new medication. But still they feel that this vitamin they saw for sale, this treatment, exercise, technique will help me.

So instead of screaming, I smile and nod my head. I thank them for thinking of me. I half listen to them on the phone. I sometimes find myself falling asleep.

I’ll tell you something though, I don’t answer the phone all the time. I screen my calls. If I do answer and the advice ramble begins, I’ll excuse myself and say that I’m not feeling well.

How do you handle unwanted medical advice?

photo credit: srhbth

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?

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!

I learned that one of the symptoms of hypokalemia is depression. I’m not feeling so bad about feeling so bad now. Seriously this depression is getting to be annoying. I try to get myself out of it, but that’s like me trying to wish myself to become a geek and know things like msql databases, micro sd cards, css and Plurking.

This kind of depression is only going to be cured by me picking up the phone to call my Psychiatrist to make an appointment. He may increase the Cymbalata or add something. But that takes effort that I don’t have, plus it means another doctor visit, which I’m avoiding like the plague.

I know I should do it and I probably will when I get to the point of not being able to get out of bed. Just kidding, really.

I’m in one of those funks where I’m having trouble feeling positive about my health issues which translates into feeling sad, frustrated and angry. I’m also feeling guilty too because I haven’t been doing much of being a parent to my daughter. I spend too much time sleeping and feeling like a zombie than to feel capable of really being there for her.

It’s times like this when I think back to what my life was like before I was sick. I even dream about it. I catch small memories of my life like they’re in picture frames as a wife and mom who worked, took care of my children, my house, cooked homemade meals every day and volunteered for tons of things.

I was the mom who was there at school for all of the special events. I was the mom who could take care of a toddler and a teenager. I know that even if this flare doesn’t get better I’ll find ways to handle my life. But it’s hard to admit that I’m so sick again.

I recently stood on a scale and got weighed. It wasn’t my choice. I was at the doctor’s office and it was pretty much mandatory. But guess what? I was pleasantly surprised! I ended up weighing less than I did a month ago, even 6 months ago. My blood pressure was normal too. I’m in shock but very, very happy.

With the hot weather upon us already I can actually picture myself tying on swimsuits without freaking out. I can even think about buying some new shorts and capris too. How a few minutes on a scale can make me feel a bit light headed is quite funny to me.

I guess the short time I ate junk food while stressing out over the Single Mothers ministry at church didn’t really affect my weight. And adding some easy exercise is helping me out too.

This Saturday is a very important day for me and for my church. We are having our annual Single Mothers Appreciation Day where we pamper the mothers, provide childcare, lunch, chair massages and more. We also get to share the Gospel with them and their children. The women who attend love it. We have a lot of women return year after year.

The problem for me is that I am not feeling well. I’m getting really bad stomach cramps that I’ve had before which caused me to be sick for days. I needed an antibiotic and couldn’t eat much or move around.

My friend and I run this ministry. I can’t be sick! I’m praying that this is just a fluke and it will be over soon. I have a feeling that this may be have been caused by something that I did by accident this morning.

I take two pills before breakfast and dinner for my stomach. This morning I think I took those pills twice! I’m praying that this mistake will run it’s course and be over with very soon. I take so many medications and even though I keep them in pill sorters I often get mixed up about what I’ve taken or didn’t take.

If I tell my doctor I sure hope he won’t send me to drug rehab thinking I did this on purpose! But believe me these aren’t the kind of pills that anyone would take as a “recreational drug”.