The endocrinologist finally found a solution to the low potassium issue I’ve been having, but now I’m constantly fatigued. I can sleep all day and all night. If I try to stay awake, the brain fog is much worse and I can feel myself nodding off.

I’ve been taking Spironolactone along with Potassium supplements. My Potassium level at my last blood test was 3.8. That is the highest it has been in years. I was thrilled! When the doctor saw the improvement I made, he increased the Spironolactone to 100 mgs. twice a day and stopped the Potassium.

I didn’t realize the fatigue I was feeling was related to the increase in my medications until I did a search for side effects on Spironolactone. Now I’ll have to call the doctor on Monday to see if he agrees with me and see what I can do to maintain the normal potassium level that I need. Because of the diagnosis of Myasthenia Gravis, I should be at a Potassium level of 4.0 so this is a serious health concern for me. I don’t want to spend my life sleeping though.

Have you had a problem with fatigue and Spironolactone?

Celebrity health advocates often do a good job of  spreading the news about a specific medical condition. When you see a YouTube video featuring Zak Efron and Vanessa Hudgens for Stand Up To Cancer, the cause gets noticed. Think about Jerry Lewis and what he has done for the Muscular Dystrophy Association and the conditions that the MDA covers.

Dick Van Dyke was recently named the spokesperson of the Cell Therapy Foundation which promotes stem cell therapy for diseases such as heart disease, Lou Gehrig’s disease (ALS) and cancer. Kellie Martin, who you may remember from Life Goes On,  ER or Mystery Woman is a spokesperson for the American Autoimmune Related Diseases Association (AARDA).

Celebrities bring awareness to unknown diseases. They help to raise money for research. They also inform people about symptoms, how to get diagnosed and available treatments. It can be difficult, though, to find a celebrity advocate for a medical condition that they actually have, especially if they are working. Many celebrities want to hide any kind of illness they have. It can hurt their career because they can be seen as someone who may not be able to show up when needed.

As they say, the show must go on. If a celebrity can’t work because of being sick, being hospitalized, or having a flare up, they can shut down taping of a show. There are also insurance issues to be concerned about. If a celebrity is known to have some type of medical problem, the insurance for the project they are working on (TV show, movie, CD, video) can be increased. Let’s not forget the rumor mill and the embarrassing stories that will be reported. For example, there was recently a sighting of celebrity buying incontinence supplies and it was fodder for celebrity gossip.

I have Rheumatoid Arthritis and use Humira for it. Before using Humira my doctor tried the normal prescription medications until the pain lingered and I had trouble walking, typing, opening jars and the pain lingered even more. After about two months of using Humira I began to notice that the pain lessened and I my joints were a more flexible. I could walk longer, type a bit more and open jars with one of those rubber things.

Humira had a wonderful side effect too. It helped put the Ulcerative Colitis in remission. Imagine that. If I could use Humira more than once every two weeks, I’d be shooting it up a lot, a whole lot. I learned that Humira is used to treat Chrons Disease so it’s normal to have a remission to the UC.

I had a bit of a scare the last month though. Even after the Humira, I had more than normal pain from the Rheumatoid Arthritis. It was bad and in places I didn’t have it before like my knee and my left wrist. I had trouble walking, typing and opening jars again. Sometimes it was so bad that I couldn’t do any of those things. I saw my Rheumatologist after it happened a second time. We discussed that some times the Humira can stop working on your body.

We’re going to wait it out and use some other medications in the mean time. I’m thinking positively right now because Humira has worked so well for me all along. I’m thinking that it’s a flare up and my doctor agreed that it’s a possibility too.

It’s difficult to cope with a new diagnosis, especially if you have a serious health issues already or a list of chronic illnesses to live with. I’ve recently had a new diagnosis of narrow angle glaucoma and it felt like my body was waging war against me.

Acknowledge Your Feelings

Because getting a new diagnosis can cause us to grieve, we may go into a state of denial. That’s when your support system can come into play especially if you need immediate medical treatment. Once this has passed, go along with your feelings which may run the gamut from anger to fear. I played the pity party for a while because I did not want another thing wrong with my body. I was sad and angry. My family and close friends let me cry and yell and stay alone for a while. Then they were sure that I got to my appointments and followed the doctor’s orders to save my eyesight.

Share With Others

There’s no need to tell everyone you know right at first, or even tell anyone at all. Soon, though talking about it with those closest to you can have a big impact on how you deal with your diagnosis. You probably know the people that will say the right things, be there for you and kick your butt when you need it. I told my husband immediately because I didn’t know if I would be able to make the drive home from the doctor’s office without hearing his voice. Then I shared it with just a few people. When I was feeling more confident after learning more about this type of glaucoma, I wrote about it on my blog.

Support groups specifically for the new medical condition may be helpful. You can find them online and sometimes in person. If this is a long term condition, consider joining an organization that your doctor or support group recommends so you can keep up with the latest information.

Get ‘Er Done

Even if you are still depressed, angry or wanting to advance medical science by 100 years, get treated, get tested, take the medicine you need and do what you can to get better or live with the new diagnosis. It’s not going to be fun, but your life is worthwhile.

If you feel too depressed to make a move, call in the ranks of your support group, tell your doctor or see a counselor, psychiatrist or psychologist. Please promise me that you’ll get help.

Don’t Be A Hero

If this new medial condition causes pain, the new medicine is making you feel sicker, you don’t like the treatment center, etc. tell your doctor. Don’t suck it up. You’re going through a lot right now and you have every right to feel as comfortable as possible.

It’s Not Yours

I never take ownership of the chronic illnesses that I have. You won’t hear me say, “My Sjogren’s Disease is making my eyes dry.” Instead, “That damn Sjogren’s Disease is making my eyes feel like crud.” The medical condition doesn’t have me. I can accept it, but not like it. Try your best not to let your medical condition run your life. It will be hard at first when you’re newly diagnosed, but as time goes on it will become a part of your life and not your life.

There’s still some anger, sadness, even depression and anxiety, but I get help when I need it and I fight when I have the energy. If that’s your style, make that your goal. If you have a different way of coping with a new diagnosis, then find it and go for it.

When you’ve got a cold, or are in a flare up, or recovering from surgery,  you need some fun time to forget your woes. You may be stuck in bed or even the hospital but you can still do somethings to amuse yourself. Here are the Top Five Ways To Have Fun When You’re Sick:

1. Color - Be sure that you get a brand new box of crayons and a new coloring book. There’s nothing like the smell of Crayolas to bring a smile to your face. Don’t worry about coloring in the lines. Just go at it!
2. YouTube Videos - If you’re able to use a laptop, then just go to YouTube and watch the videos that people make themselves. Keep clicking around and laugh at the stupidity of people and what they’re actually willing to put online for everyone to see.  No computer? Watch some form of funny videos on TV. There’s tons of them now.
3. Talk Radio -  Find a talk radio station that has the most outlandish ideas about conspiracy theories or zombies and call in. Pretend to agree with the host and carry on like you’re having a normal conversation. Blame it on the meds.
4. Play With Toys - Pull out those old race cars, Barbies, Legos and play in bed. (Not that way.)
5. Hair and Make Up - If you feel up to it, play with your hairstyle and do something wild. Try some new shades of make-up that you haven’t used in a while. You too guys. Lots of girls love it. If you’re not up to it, let someone you love, help you out. Now that’s fun!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myasthenia Gravis, Sjogren’s Syndrome, Fibromyalgia, Rheumatoid Arthritis and Ulcerative Colitis.
2. I was diagnosed with it in the year: with UC in 1985, with MG in 2000, the rest 2001 or the year later.
3. But I had symptoms since: 19844 for the UC
4. The biggest adjustment I’ve had to make is: not being able to work and giving up my active lifestlye
5. Most people assume: I’m not sick
6. The hardest part about mornings are: waking up because I’m so tired
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: pain and insomnia
10. Each day I take __ pills & vitamins. (No comments, please) 36
11. Regarding alternative treatments I: am not able to try them because of the medications I am on for Myasthenia Gravis. There are many interactions for a certain prescription I take.
12. If I had to choose between an invisible illness or visible I would choose: visible so more people would understand
13. Regarding working and career: I’m sad that I can’t continue working in the career I chose for myself. I’m happy that I can work as a blogger though.
14. People would be surprised to know: that I’m in pain almost all the time.
15. The hardest thing to accept about my new reality has been: that I have to rely on other people for simple things.
16. Something I never thought I could do with my illness that I did was: attend a conference.
17. The commercials about my illness: re: Fibromyalgia and RA - make it seem like a pill or shot cures the disease.
18. Something I really miss doing since I was diagnosed is: dancing, drinking  a few beers, running, walking as much as I want to
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: blogging and photography
21. If I could have one day of feeling normal again I would: spend it with my family, listening to loud music, dancing, cooking and eating all day long
22. My illness has taught me: to appreciate every moment
23. Want to know a secret? One thing people say that gets under my skin is: you look great!
24. But I love it when people: recognize that most of the things I do take me a lot of effort
25. My favorite motto, scripture, quote that gets me through tough times is: I can do all things through Christ who strengthens me. Philipians 4:13
26. When someone is diagnosed I’d like to tell them: find a doctor who is supportive and knowledgeable and a support system
27. Something that has surprised me about living with an illness is: how understanding my husband and family are
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter, who was much younger for play dates so she didn’t have to sit home while I slept
29. I’m involved with Invisible Illness Week because: it’s so important for people to understand about us, what our lives are like, what we go through each day and how they can support us
30. The fact that you read this list makes me feel: fantastic!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com