Friday, May 27, 2011
Monday, May 23, 2011
Michael Corleone said, “Just when I thought I was out, they pull me back in.” Boy, do I know how he feels. Of course, he was talking about the mob while I'm thinking of a different type of crime family – The Chronic Illness Mafia.
Last Thursday marked day three in bed. I had zero energy. I could barely keep my eyes open and any activity, be it getting a glass of water or letting the dogs out to do their business, zapped me of my reserves. I was exhausted beyond the point of exhaustion. My body felt heavy, especially my legs. So heavy, I checked the foot of my bed to make sure I wasn't sharing it with a horse's head.
Earlier in the week, I hardly felt fatigued at all. I ran errands in the morning, prepared dinner and even went for a nice walk in the evening along the waterfront. I felt good. I paced my activities. I didn't overdo it. I continue to faithfully take all my medications and supplements, exercise ~ I do everything I am told to do. So, why is it that every time I start to feel better, it just pulls me back in?
I'm beginning to wonder if I'm not only fighting Fibromyalgia and Lyme Disease, but also Chronic Fatigue Syndrome. Fibro and CFS are virtually identical in symptoms, the only difference being the absence of tender points throughout ones body. So, it remains a possibility. It's also been speculated that Lyme Disease could be the “catastrophic event” that causes Fibromyalgia or the infection that lingers causing CFS. Maybe I'm on the wrong track entirely. Maybe my problem is that I am spending too much energy “fighting” and not concentrating enough on healing? Or maybe I'm expecting too much too soon. I'm only on week three of a four week doxycycline protocol to treat Lyme Disease.
A friend of mine suggested I see a Naturopath because they can further investigate where the energy loss is coming from ~ essentially look at all things more closely that an MD doesn't look at and treat it homeopathically. For instance, is my body making enough cortisol? Is my thyroid low? Do I have a hormonal imbalance? They even look at neurotransmitter levels and vitamins in the body. I'm hoping to find a really good Naturopath, one who works under the umbrella of a doctor's office so my insurance will cover the visits, once I'm finished with the antibiotics.
I'm also going to accept the fact this is just my life. I am chronically ill. I am tired of fighting. Its time to look inward and start healing. As Zen teacher, Joko Beck, said: “Our life is always all right. There's nothing wrong with it. Even if we have horrendous problems, it's just our life.” I may not be able to work outside of the home again or socialize a lot, but I have my family and close friends. I have this life ~ this one life ~ so try as you might, I will make the best of it and you will not pull me back in …
Friday, May 13, 2011
During the maintenance process yesterday, Blogger ate my post! Regrettably, I couldn't retrieve it nor upload the repost until today.
Today is Fibromyalgia Awareness Day and I wanted to write something meaningful and encouraging for all those who suffer from this debilitating illness as well as informative and educational for those who have family members or friends affected by it. I have all these ideas about spreading awareness from sharing articles to personal experiences but it all seems futile. I mean, why bother? How do I spread awareness effectively when so many in the medical community continue to treat us like second class citizens or worse criminals on trial. Any progress we make as individuals suffering from fibromyalgia will be negated so long as physicians do not recognize the severity of this illness.
My primary care physician referred me to a neurologist for myoclonic jerks. The consultation took place last Tuesday afternoon. Had I known what I was going to encounter during the appointment, I would have cancelled it rather than endure the abuse I was subjected to. I left feeling unworthy and devalued and was at the point where I NEVER wanted to receive treatment by a physician again. I also wanted to quit taking all of my medications. All of them. Of course, now that the dust has settled, I realize how unrealistic my emotional reaction was. Eventually I will have to see another doctor and obviously discontinuing medications to manage my symptoms is not an option I can afford.
Between my fits of anger, disappointment and resentment towards certain members of the medical community yesterday, I stumbled upon the following presentation by Dr. Sean Mackey, assistant professor of anesthesia at the Standford University Medical Center. In his presentation, he discusses the current understanding of fibromyalgia, its pathology, diagnosis and treatment. After watching it, my hope and belief in the medical community was renewed. I ask you to please take the time to watch it as well and to pass it along in support of Fibromyalgia Awareness.
I also came across some eye-opening statistics. Do you know that between 3-6 million Americans suffer from fibromyalgia, yet the NIH only funds $9 million in research compared to 3,630 Americans suffering from West Nile Virus with $46 million in allocated research funds? Research Funding Comparison
To answer my own question, why bother spreading awareness when it seems futile? I think the answer is clear. We need to advocate for our own health to ensure - scratch that, demand proper treatment by the medical community. I cannot emphasize the importance of finding a doctor who listens and respects you and hasn't forgotten the Hippocratic Oath of DO NO HARM. We also need to demand more research money is spent towards finding a cure for fibromyalgia. Last, we need to educate the masses. Please watch Dr. Mackey's presentation. Fibromyalgia is more than just aches, pains and ongoing fatigue!
Thanks for letting me share Fibromyalgia Awareness Day with you!
Saturday, May 7, 2011
It’s been close to two weeks since my last blog entry and although soon after publishing it, I had a draft of my next topic composed in my mind and ready to tap out on the keyboard, I couldn’t do it. Weeks of unending sleep deprivation from insomnia finally caught up with me. I could barely string an entire sentence together in written form let alone a blog entry. Fibro fog, short term memory loss, all of the problems associated with sleep deprivation were getting the best of me. Finally I had enough and I rescheduled my doctor’s appointment. As far as the topic is concerned, which I wanted to write about next, it will have to wait another week. It seems I’m going to have to do devote more time to it than I’m willing to today. For now, I thought I’d update you on how I’m doing.
My appointment this week went really well. However, I think I overwhelmed my doc with all of my notes and everything we covered. I mentioned I was bombarding her with information and she kind of let out a nervous laugh and said, “Yeah.” As usual, she took her time with me, really listened, took notes of her own and set in motion a new plan of action.
In case you’re curious, a part of the new plan includes a recommendation from a book my best friend suggested called Figuring out Fibromyalgia by Ginevra Liptan, MD. If you have Fibromyalgia, I encourage you read this book. In fact, I highly recommend it. If you want to know more about Fibromyalgia, I recommend you read this book as well. Anyway, I gave a copy of the book to my doctor. She’s going to help me get the Elisa/Act blood allergy testing recommended by Dr. Liptan. She also ordered another round of blood tests – 6 vials total. She tested everything again! As it turns out, I tested negative for Lyme Disease, but positive for a strain of Lyme. I’m starting a four week round of antibiotics today. Unfortunately, I don’t know what this means yet in relation to Fibromyalgia. I did read online that Lyme Disease can be a trigger for Fibromyalgia, but before I jump to any conclusions I need to consult her. She also sent my blood work in for further testing – Rocky Mountain Spotted Fever. It’s not prevalent in this area, so I’m not concerned.