Laughing and crying, you know it's the same release. Joni Mitchell

Laughing and crying, you know it's the same release. Joni Mitchell

Monday, January 24, 2011

To Supplement or Not to Supplement...

that is the question while I'm on Coumadin (warfarin), which the nurse at the hospital described as a pain-in-the-ass drug. Coumadin can interact with many different drugs and supplements as well as certain foods, especially foods high in vitamin K, such as dark leafy vegetables (I was really sad that I have to pass on kale and brussell sprouts for the next six months). It's tricky to regulate the dose of Coumadin since you don't want the blood too thin, but if it's not thin enough, it won't protect against more blood clots. And you can't take anything that can cause excessive bleeding like ibuprofen or aspirin.

As a fibromyalgia patient, I have a basketful of supplements that my daughter refers to as "mom's pharmacy." With a dozen or so supplements, I was taking over 40 pills a day to regulate sleep, pain, digestion, mood, inflammation and brain cognition. But which ones might interact with Coumadin? My sleep formula said right on the label not to take with anticoagulants because it can cause excessive bleeding. So, I stopped all supplements cold turkey.

Now I've had a chance to consult with my primary care physician and my rheumatologist and I have a back-to-basics regimen in place. Here's what I'm taking for now:

800 mg SAM-e for mood
400 mg 5-HTP for mood and sleep
1200 mg fish oil (some reports say it's ok to take fish oil on Coumadin and some say it's not) for brain cognition, mood and inflammation
Magnesium for pain and sleep
Vitamin C and Vitamin D for general good health
And I'm also looking for a good multivitamin to replace the one I had been taking
I also take Tylenol for pain since Advil is off the table for now.

For a good overview of the do's and don'ts of taking Coumadin, check out this link:
Understanding Coumadin

For diet information and recipes try this link:
Coumadin (warfarin) Diet Information


I used my own artwork to create this greeting card

Dots Brown Multi 5x7 folded card
Create personalized greeting cards and invitations by Shutterfly.
View the entire collection of cards.

A BIG thank you to my nephew, Dr. Ryan Nelkin, for diagnosing my pulmonary emboli!

Tuesday, January 18, 2011

Mystery Solved!

After another painful attack last week - this time sharp pain on my left side - I called my nephew who is an ER doc in San Diego. He finally put all the pieces together and diagnosed me over the phone! He said that based on my symptoms he would be concerned about blood clots in my lungs. I called my doctors and insisted on a CT scan which they ordered the same day. Sure enough, the CT tech told me that I had a positive result for bi-lateral pulmonary embolisms (PE), in other words, I had blood clots in both my lungs. I was taken to the hospital via ambulance and admitted overnight. The doctors put me on blood thinners, which I'll need to stay on for six months.

It's not necessarily good news, but I'm so relieved to finally know what's wrong with me and how to deal with it. Those weeks of worry, anxiety and pain were pure hell! Thankfully my nephew was on the ball and they were able to diagnose the condition before it became life-threatening.

The Culprit
The doctors tested me for genetic clotting disorders, but after the lung doctor checked my films he realized that being on the birth control pill was a contributing factor. I had started Yaz over the summer to deal with PMDD (premenstrual dysphoric disorder), which is like PMS on steroids and seriously affects my fibromyalgia.

All through out the summer I felt great. I had finally gotten off the hormonal roller coaster and I had energy to burn. I even went on several hour long bike rides with my husband, which I haven't been able to do in years. I still have that picture in my mind of feeling like a whole, healthy person, even if for a little while - a three month oasis in 13 years of wilderness.

Then it all came crashing down this fall. First came the mother-of-all fibro flare-ups and then the first painful symptoms of a PE that landed me in the ER just before Thanksgiving. It's been a long, strange journey, but I've had a lot of love and support along the way. Thanks to all my family and friends who truly helped me make it through.

And a special shout-out to my nephew, Ryan!

Read how to prevent blood clots in an article from Beth Israel Deaconess Medical Center:
Sitting May Be Hazardous To Your Health

My bloodwork showed the presence of IgM cardiolipin antibodies which can cause blood clots or even miscarriages. Luckily, my baby factory has been closed for years, but the blood clotting could be an issue. I should be fine as long as I'm on blood thinners but I may have to take an aspirin a day from here on out if the antibodies persist. I can be retested in six weeks to see if the antibodies are still present in my blood.

Accoroding to the Lupus Foundation website: "We do not yet understand why a person's immune system begins to manufacture these antibodies."

Sunday, January 9, 2011

FM Support Group

After all these years, I finally found a fibromyalgia support group close enough to make it feasible for me to attend. While there are many forums and information on-line, nothing replaces face-to-face contact.

I met with the group for the first time last week. It was a gratifying and humbling experience. Gratifying to talk to others who understand that the simple act of getting showered and dressed to go out can be completely exhausting. Humbling to hear some of the trials and tribulations others have faced. Many had other serious health issues on top of the fibromyalgia such as migraine headaches, lupus and serious environmental allergies. Many had symptoms I've never experienced like sweating profusely with the slightest exertion or severe Tinnitus, ringing in the ears. It made me grateful for the good health that I do have!

I also met a guy with FM, which was a first for me. There was some discussion among the group about how commonly FM occurs in women vs. men. I've heard around 80% of those affected by FM are women, but the leader of the group insisted it was only about 60%. She said most men don't get diagnosed because they just tough it out. Either way, the majority are women.

I found the support group by searching on-line. There were several sources that listed fibromyalgia support groups based on location. If you're looking for a support group, I suggest using our good friend Google to locate one.

Friday, January 7, 2011

Que Sera, Sera - What Will Be, Will Be.

Here's a confession: I'm scared...I'm anxious...I'm worried. There's something wrong with me (besides the fibro) and I don't know what it is. Just this week, I've had a chest x-ray, blood work, and an EEG. So far, I've eliminated a brain tumor and lung cancer - two bullets dodged!

Not knowing is killing me. On the other hand, I'm afraid to find out what it is. I did a tarot reading to try and get some clarity on the issue. The first card I pulled was the Five of Disks - the worry card. The Five of Disks represents worry about a physical concern such as health or money that is keeping the person in a state of anxiety. How appropriate is that?

According to The Tarot Handbook by Angeles Arrien, worry is a state of being:
It is the state of being/consciousness that always takes us back to the past or into the future but never has one handling the present.

That is very true for me. I'm either worrying about all the health issues I've had in the past and how difficult they have been to overcome or I'm worried I have some terrible, debilitating disease or tumor.

Arrien goes on to say: can collapse worry by staying present and not getting pulled into future concerns or past experiences.

 Now every time I start to worry about what horrible disease I might have, I hear Doris Day singing:
Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.
And I swear it helps!

P.S. Blood work showed that I DO NOT have rheumatoid arthritis or Lyme disease. Two more bullets dodged! My doc is stumped and referred me to her favorite rheumatologist. She sent him my "sad story" so he'll have all the background details.

Saturday, January 1, 2011

Wishes for a Healthy New Year in 2011

The holidays are over and we can all breath a sigh of relief. In fact, take three deep breaths right now. The holiday season can be filled with fun, family and friends, but it can also be filled with stress and system overload, especially for those of us with fibromyalgia. But it's a new year, a new day. Time to take time for ourselves. Time to get back into an exercise routine, but rest when you need it. Time to be kind to yourself and not expect too much. Time to take it easy, relax. You deserve it!

My New Year's Resolution for 2011:
To be healthy and vibrant and cope easily with life's changes.
Life is full of changes, whether it's menopause, children growing up and going off to college or simply the change of seasons. These changes can cause stress on our bodies which can depress our immune systems, cause fibro flare-ups, sleep disturbances and other unhealthy responses. The trick is to cope with the changes in a way that keeps us healthy and strong.

My strategy to be healthy and vibrant in 2011 is to continue to look for the root of the pain I've been having in various areas of my body. It's a different kind of pain than I've experienced with FM so I think there is a another cause. So far, I've ruled out a recurring brain tumor and consulted with a Neurologist who thought that it was not a neurological problem. Just to be sure, she ordered a few tests to rule out some possibilities. I'm determined to figure out the underlying issue so I can treat it and be healthy and whole.

My strategy to cope easily with life's changes is to deal with past traumas that have created negative belief systems which can cause dis-ease in my body. My therapist recommended a therapy called EMDR, Eye Movement Desensitization and Reprocessing. By following a flashing light with the eyes, a part of the brain is activated which can process the trauma and reprogram the memory into a positive belief. I'm not sure exactly how it works. In fact, even the experts don't know exactly how it works. But I trust that it will be beneficial to my emotional and physical health.

So, to all my readers out there in cyberspace, I wish you a healthy and happy new year, filled with a renewed passion for life and an ability to cope with all of life's changes coming your way.