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

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)

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.

I had just started doing a small exercise program where I’d walk as much as I could. I can’t walk outdoors so I’d walk around my house and in stores. I’d find excuses to walk. I was doing very well and knowing that there was no need for diet pills to lose some extra weight.

I also know that exercise is so important to help with arthritis and fibromyalgia symptoms and to keep my digestive process active. It also makes me feel better about myself. I was thinking of buying a Wii Fit to keep me on track and to get a start of some yoga too.

Now with everything that’s going on with me health wise, my walking has been put on hold.  I sure hope it won’t be long until I can get moving around again. I try to do stretching so that I at least am moving around a bit.

June is Myasthenia Gravis Awareness month. This is very important month for me as I have had this rare neuromuscular disease for a little over five years now.

Myasthenia Gravis or MG means “grave weakness”. It is an automimmune disease that affects the voluntary muscles of the body. The most common symptom of MG is ptosis which is a drooping eyelid or eyelids. That is how MG started with me. It can also cause double vision and other visual problems. For many people this is the extent of what they will have as MG symptoms. This is occular MG.

For others like me, other parts of the body are affected. This is then called generalized Myasthenia Gravis. Facial, neck, arm, trunk and the muscles that control chewing, swallowing and even breathing can be affected. I have had all of these symptoms but the most problematic only occur rarely. I also have general muscle weakness, fatigue and poor stamina.

I am doing what I can to promote this rare disease because it is believed that there are people that have it but are not properly diagnosed. Because there are treatments that work, it is so important to see your doctor if you have any symptoms listed here.

I’m promoting this on my blogs, website, Squidoo lenses, on Facebook and by writing letters and shipping boxes of information from the Myasthenia Gravis Foundation of America. Please help spread the word about MG.

I’ve been very weak and sleepy for over a week now, but it’s been much worse these last few days. I call it feeling like a rag doll. These are the symptoms I get from Myasthenia Gravis. I can’t tell you how many hours I sleep, or even how when I wake up I end up falling asleep again. I can’t even fight it.

It is a terrible feeling. The thing that upsets me the most is not being aware of what’s going on around me. My poor daughter has been pretty much without a mother for the last few weeks. I drive her to and from school, barely. But as for anything else, she’s on her own. My husband of course has his full time job and then another one when he gets home. He feels as if he’s going round and round on fitness equipment, like a treadmill and not getting anywhere.

I’m hoping that these symptoms get better soon so I can get back to living the somewhat normal life I’ve been.

I’ve been in a real brain fog lately. I found out that my potassium is still low after increasing my dosage. I’m going to have to take a new form of it so that I can absorb it correctly. It’s an tablet that dissolves in water like Alka-Seltzer. So feeling weak from the lower potassium has me doing all sorts of crazy things or should I say crazier than I normally do?

Today I had an appointment with my cardiologist. I had just been there the day before with my Mom who was having high blood pressure in the 170’s. I left the house in plenty of time but I kept thinking I had missed the medical building. In actuality I hadn’t even drove near it yet. So here I was doing U-Turns, driving into parking lots so I could make turns, and asking myself where was I?

That’s a scary thought when you’re in your own neighborhood. I could understand asking myself about things I don’t know about like what type of brake pads my car needs, or what HDMI cables are, or how to ftp a plugin to my blog.

I finally arrived for my appointment. I was about 10 minutes late. I thought my blood pressure would be hight but it was very good. I am scheduled for an echocardiogram next week because I have mitral valve prolapse and rheumatoid arthritis. So add another doctor’s appointment to my “to do” list.

I know many chronically ill people who are unable to leave their homes whenever they want due to pain, medication side effects, being unable to drive and just not feeling well. When this happens loneliness can set in. If you are young and your peers are working and have a family of their own it can be difficult for them to make time to visit you. You may not feel well enough for visitors. You may be embarrassed of how your house looks because you’re not able to keep it clean.

Whatever the reasons, being almost homebound or totally homebound is quite common. In the Chronic Illness Support Group I run, this is a very big issue for our members. We have members who are no longer able to come to meetings because of their health issues. I try to keep in touch with them though.

There’s a trend now of people with disABILITIES and chronic illnesses using a computer and the internet to connect with the outside world. Just look around and see how many blogs are authored by people with medical conditions, how many websites and message boards are made for us too.

Having the right equipment for your computer is a must. If you have arthritis you may need an ergonomic keyboard. If you are paralyzed, you may need a head pointer to type. There are so many examples of technology that make using your computer easier or even open up the means of computer usage.

Many of these products are expensive. Some government agencies and non-profit groups provide the technology. If you are looking to buy something for yourself shop around and even tried refurbished. You may be able to find something among used cisco parts, or other companies that sell used equipment if new is too expensive. Be sure to check for a warranty, the company’s customer service ability to work with you and other types of feedback from buyers.

Being online can help you feel that you are a part of society, especially a section of society that understands you.