My Chronic Life

I’m all for trying something natural to help you with a sickness or medical condition. But please understand that when you have lots of medical problems and are lots of medications you may not be able to just take something that your doctor doesn’t approve. There may not be studies that prove it works or even if it’s safe. There may be contraindications that my doctors or pharmacist are not aware of. There may be ingredients in herbs or whatever that are not listed or have unknown side effects.

So if you’re peddling herbamacallit, naturalfixit, Ephedrasil Hardcore or vitaminoprin I’m sorry to tell you, thanks but no thanks.

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.

Do you think that Disney needs a Disability Adviser? I do and I want to be one!

Most of you know that I am a Disney addict. I’ve been to Disney World at least 300 times. We live close by are Disney Vacation Club owners so we go quite often. Since being diagnosed with Myasthenia Gravis, I have to use a scooter to get around. I can’t walk long distances any more.

I’ve come to learn that although Disney makes most things accessible to people with disabilities there is always room for improvement. I entered a contest where I can take part in my dream job for the day and win some spending cash too.

Will you help by voting for my video here? You can vote every day until September 25th. Thanks in advance!

Randy Pausch died today, July 25th from Pancreatic Cancer but his love for life, his inspirational beliefs and his love of family and friends will last just as his “Last Lecture” will. Mr. Pausch is survived by his wife Jai and his three children, Chloe, Dylan and Logan. He was diagnosed with cancer in September of 2006 and died at the age of 47.

I know that by watching his “Last Lecture” that I should focus on his life and the zest he had for all of it, even educating people about his treatment and maintaining an online update of chemotherapy and the various treatments he went through. He kept a “box score” which showed his blood pressure, tumor marker and creatine numbers.

Some of the highlights of the Last Lecture are the following:

• Live out your childhood dreams
• Help other live out theirs
• Have fun every day
• Maintain your childlike wonder
• Never give up
• Be an earnest person
• “The best of the gold’s at the bottoms of barrels of crap.”
• Have friends who can tell you the truth about yourself and listen to them
• Be thankful to those that help you
• “Don’t complain. Just work harder”
• Find the good in everyone

Randy Pausch’s “Last Lecture: Achieving Your Childhood Dreams” was held at Carnegie Mellon University on September 18, 2007. It was actually given for his children not for the audience. It is touching, humorous and well worth watching over and over. The Last Lecture is also in book form.

Please visit Randy Pausch Tribute Page sponsored by First Giving to help raise money for Pancreatic Cancer research.

And here is the video for you to see over and over:

Michal Savage has reached an all time low by going on a rant about Autism. I’ve posted about this on my other blog Brain Foggles but I want to reach as large an audience as possible with this information. Please do all you can to share this, to write to the advertisers to tell them to drop their ads for Michael Savage’s radio show, Savage Nation, and to ask your local radio stations to drop his show.

Here’s a bit of what I’m writing about so you can see for yourself:

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.

I was pleasantly surprised to be given the Arte Y Pico award by a health blogger that I greatly admire, Sophia at Healthy Perspecives. Her blog is filled with up to date information on health issues that affect everyone. She provides recipes for foods that are nutritious but tasty, easy to read and understand health tips, information about alternative medicine and much more.

Here’s the information about this award:

1. Choose five blogs you consider deserving of this award. (Creativity, interesting material, etc.)

2. Each award includes the name of the owner of the blog and his/her link

3. Each award winner has to show the award and put the name and link to the blog that has given her or him the award itself

4. Award winner and the one who has given the prize have to show the link of “Arte y Pico” blog, so everyone will know the origin of this award

I am happy to forward this award to:

1. Chronic Chick Talk
2. Life In The Autoimmune Lane
3. Loving Life With Diabetes
4. Migraine Chick
5. Reasonably Well

It was nice to find the comment about this award waiting for me on my blog. It was much better than getting a phone call from a debt collection agencies!

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:

Hemochromatosis awareness month is July. This rare disorder also known as HCC causes the body to store too much Iron in the blood. If not treated it can be fatal because the Iron cannot be excreted and forms in the organs of the body.

Some symptoms of this disease are the following:

• arthritis in the hands, especially the knuckles, ankles and hips
• impotence
• liver problems
• hypothyroidism
• cardiac problems including heart attack, irregular heart beat and congestive heart failure

Diagnosis is usually made by specific blood tests. The main treatment for HCC is phlebotomy, which is the removal of blood. The number of treatments depends on the iron levels in the blood. Usually once the levels are normalized treatment is then on a maintenance schedule.

Diet also plays an important role in treating HCC. Avoiding foods high in iron like red meat. Also limiting alcohol and Vitamin C which helps the body to absorb Iron is important.

For more information please the National Heart, Lung and Blood Institute.