My Chronic Life

I like doctors who tell it like it is, no sugar coating for me please. I want a good bedside manner of course, someone who is friendly and respectful. But when it comes down to the nitty-gritty I want the truth.

That’s one of the reasons that I love my neurologist. He gives me hope but not false hope. I can remember about 2 years ago going to see him for my check up. I was so excited to tell him my good news. At that time I was taking 60 mg of Mestinon every 3 hours and 2000 mg of Cellcept. The Mestinon dosage had dropped considerably (from 120 mg every 3 hours) and I was feeling great.

When he came in to the exam room, I was bursting with pride. I told him that I was in remission. He smiled but didn’t seem very excited. He did his examination and was very pleased with my improvement.

Then we talked. He told me that he doesn’t use that the word “remission” can be misleading. That is what he aims for of course but there to be in real remission would mean not having any symptoms for years in his opinion. Also he’d want me to be able to lower the does of Cellcept.

He said that he was very happy that I was feeling so much better but for me to not get lax on reporting symptoms at the risk of feeling that I’d be letting him down. If I continued to improve or stay the same by my next visit we’d lower the Cellcept.

Many things have happened since that visit. I’ve learned that Myasthenia Gravis is a cyclical disease. You may be feeling fine and it may just hit you out of the blue.

I can feel the symptoms hit me when I go outside into the heat many times. The worst is going from my cool house into a very hot car. Saturday night I was sitting here writing on my blog and all of a sudden I started to feel yucky (yes that’s my medical jargon for MG symptoms). Sure enough, my voice starting slurring and my muscles started twitching.

I stopped blogging, checked the time for my next Mestinon dosage and waited to see if I needed to take some extra. Since it was close to my next dose, I just took that. I still needed some time to rest and was worn out for a few hours.

Right now I’m taking 90 mg of Mestinon every 3 hours and 2000 mg of Cellcept. So much for my remission, but if you knew how sick I was when first diagnosed five years ago until now, you’d see that I’m doing so much better.

How do you feel about support groups that are centered around a specific illness or health problem? I run a support group for people with chronic illnesses which hasn’t been meeting for a few months due to my being too sick to take charge of things.

I’ll be starting it up again in September and I’m looking for ideas to keep the group positive. I don’t want it to be a pity part but a group where we can find solutions to our problems or at least feel heard and understood. What ends up happening sometimes though is that we have several very lonely people in the group who don’t get out much. The group is their time to socialize which is fine, but it’s also their time to complain.

I can sympathize but I can’t let them control the group and have other people just listening. I’m not good at getting the conversation turned around to another topic. So we usually end up listening and I end up getting worried that the other members are getting annoyed. Our meetings go on too long also because of this. This is difficult for me as I’m there early to set up and then have to stay to clean up. I’m exhausted on meeting days.

Any advice or suggestions? If you are a member of a support group or run one, please let me know some of your ideas.

Something, not sure what yet, is wrong with my Kidney as my new medication prescribed by the nephrologist is working. During my vacation this past week I got my blood test results. For the first time since December of 2007 my Potassium levels are normal.

I was feeling well enough to visit to the parks at Disney World though not every day. I did have to nap every day and got leg cramps and some tingling around my mouth pretty bad a few nights though. On Monday I’m scheduled for blood test for my magnesium level. It seems that if this is high those symptoms could continue.

The worst thing that happened on vacation was getting my scheduled blood test done. I didn’t know what lab to go to even after calling the front desk and my health insurance and using the phone book. My husband finally went to the concierge line and got the address and phone number of the closest lab. We tried this phone number like all of the others from the phone book but there was no answer.

We did find the place by using our GPS. When we arrived, they were packed. Not a good way to spend our vacation time but I needed this test done. When my name was finally called, the receptionist said that her boss just called her on her cell phone to say that people were complaining because they couldn’t get through on the phone. I said the same happened to me. I felt like telling her their large and profitable company needed to spend some money on a CAT6 to keep their phone and fax lines working.

We could have made an appointment if the phones worked. Instead we spent over an hour there plus the travel time to and from. That morning was wasted. I was too tired afterwards to do anything except go out to dinner.

I am glad to know that the doctor has been able to learn so much through the tests I’ve had done. Now to work on managing all the blood levels that will keep me feeling better.

I was pretty amazed to see a recent video about Myasthenia Gravis featuring young people. Although I don’t believe all that they say, here’s something for you to learn from:

I plan on running two blog contest in the next few weeks. One will be here. I think the prizes will be books about chronic illness. I think. It’s difficult to come up with ideas for prizes but I’m working on it.

I have been writing more over at one of my other blogs, Mickey Fanatic, the blog that got lost in the shuffle. This blog is about all things Disney especially family travel. The contest there will be soon too. And I’m also trying to figure out what prizes to give out.

I’ve seen many blog contest ask people to sponsor prizes so I’m doing the same on both of my blogs. If you’re interested in doing this, please either leave a comment or use the Advertise Page to contact me. Please refrain from spilling the beans about what prize you’re sponsoring. I really would like to save that information for when I announce the contest. Some suggestions would be Entrecard credits, anything to do with health, like books or advertising on a health blog, blogroll links for high PR blogs, etc. Your ideas are worth it! For all I know I may get some mortgage lenders wanting to help those of us who spend lots of money on medical bills!

I’ll be on vacation for the coming week so I won’t be able to moderate your comments or answer emails but as soon as I return I’ll take care of this, promise.

You can tell I’m sick when I don’t want to go to Disney World on vacation. Yes it’s gotten to that point. We’re leaving this Sunday for six days at the World, staying at a new hotel, Animal Kingdom Villas, dining at the Crystal Palace and all I can think of is sleeping.

What a pain in the butt to feel so tired and worn out from doing nothing. I’m actually dreading getting ready, especially the night before and the morning when we leave.

My husband and I have packing down to a science. We each have our own chores to do and we get everything done in a few hours. Remember we have to pack food and of course lots of medicine and supplies for me so that adds to our time.

I know I won’t be able to help him much. I know that means packing will take longer. I know I’ll fall asleep on the way there and be grumpy when we arrive. I know our room won’t be ready until 4 PM.

So you can see that I’m not into this trip if I’m already griping about packing. Maybe if we had some new Briggs and Riley luggage I could handle it better.

Ummm, I’m not so sure about that.

Since I’ve been going through the unknown illness, I’ve been racking up medical bills. Even with very good health insurance, my constant need for new medications, blood draws and dr. visits, have really eaten up a good chunk of our budget. Then there’s the big mistake we made at the end of last year.

Call it one of those really bad brain fog moments. Call it stupidity. Call it a bad choice. But, we forgot to sign up for my husband’s company’s Flexible Spending Account (FSA). That would have paid all of our medical expenses that our insurance doesn’t cover plus over the counter items too. It even includes eye glasses.

We just totally forgot about the deadline and missed it. Now we’re scrambling to pay for these bills, as well as save for our daughter’s wedding next year. We’re thinking of finding a credit card with a zero or low interest balance transfer so we can pay things off and have money to try to save too.

For anyone with a chronic illness if you are able to take part in an FSA, take advantage of it!

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)