Friday, August 27, 2010

Changes in Gray Matter

One of the professional journals I check periodically for new information about Fibromyalgia is The Journal of Pain: The Official Journal of The American Pain Society. There are some fascinating articles regarding recent research in the area of pain and chronic pain. Note, to see the entire article most must be purchased. However, they offer very thorough synopses in fairly easily understood text. Mind you these are professional articles meant for professional readers--meaning they use $100 words at times. The gist of it may be understood, however.

The most recent one I found is both alarming and encouraging. Titled "Changes in Gray Matter Density in Fibromyalgia: Correlation With Dopamine Metabolism" Simply put, we have "holes" in our gray matter in the areas of the brain that correlate to the symptoms of fibromyalgia including "enhanced pain perception, cognitive dysfunction
(fibro fog), and abnormal stress activity." The author states that this "confirms our previous findings that FM is associated with altered brain morphometry (neuroimaging that investigates the differences in brain anatomy)." [By the way, my son adds this cheery fact: gray matter regenerates, white matter does not ; ) ]

The proposition that a disruption of normal dopaminergic neurotransmission may make a substantial contribution to the pathophysiology of FM was initially based on 3 key observations: (1) FM has been characterized as a “stress-related” disorder due to its frequent onset and apparent exacerbation of symptoms in the context of stressful events; (2) the experience of chronic stress results in disruption of dopaminergic activity in otherwise healthy organisms; and(3) dopamine plays a dominant role in natural analgesia within multiple brain centers. From: An Elephant Among Us: The Role of Dopamine in the Pathophysiology of Fibromyalgia

The Dopamine Deficiency Theory proposed by Dr. Patrick Wood began with his first pilot studies in 2005. Though his study discussed here was done in 2007 it was not published until June of 2009. I find that lapse in time very discouraging, but I suppose it is typical of the "wheels of progress". At this rate I figure they will have something approved as treatment in another ?!?!, how many years???

But, the encouraging part? They have actually found something that they can point to and say "See, there is something different here. There is a tangible, medical connection that can be seen." It
is all in our heads---but they can see it now!!! YEA! And, they are using medications now that act on dopamine and dopamine deficiencies. I believe that what is needed is a more focused approach to determine what a successful treatment strategy will be.

Below are some of my other favorite publications that I have found helpful in my quest to learn more about FMS/CFS. I hope you find them helpful, too.

The Fibromyalgia Network

The Fibromyalgia Network is a patient-advocacy organization that offers up-to-date research and treatment information, including treatments that are in the developmental stage. All of the materials published are free of any advertisements or unfounded, unsubstantiated, or spurious “cures” and “therapies”.

Membership is $28.00 per year and includes Monthly eNews Alerts, Patient-endorsed physician referrals, Support group listings, Participation in surveys, input into future article topics including their Q&A Column, Free articles and brochures, and of course, Privacy protection.


Adrienne Dellwo, Guide to Fibromyalgia & CFS

Adrienne suffers with fibro, too. She writes this blog having a background in both TV and newspaper journalism and experience researching and writing about health-related issues. She has the resources of and their medical experts to bring the newest information about FMS/CFS to her blog. Her story about life before a diagnosis is a good read.

The CFIDS Association of America

The CFIDS Association of America is the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS). CFIDSLink, the free e-Newsletter of the CFIDS Association of America is sent to your email account at the beginning of each month. To sign up to receive this newsletter, click here.

Here's wishing you a comfortable, restful, and joy-filled weekend,


Thursday, August 26, 2010

Befuddled, Bemused, Bamboozled, Flummoxed

Procrastinator Extraordinaire-Reasons why people procrastinate: Perfectionism, Lack of confidence, Can't make decisions, Don't know where to start, Depression

Perfectionist : A perfectionist is someone who lives with a constant sense of failure because their achievements, no matter how impressive, don’t ever feel quite good enough.

Unfocused, Unable to Concentrate


Do you recognize yourself? Well, it fits me to a t or to a tee, depending on your take on the phrase. (I googled it and read 8-10 answers--which explains A LOT about me!)

I have been absent from my blog for a variety of reasons (see all of the above). I have also been HURTING, as have many of you ---what is up with this summer? I have been sick with a stomach bug and my husband came home for a short visit. And, I don't know what to write about. I have several ideas, some even started in draft form waiting in line for me to DO something with them.

I am not sure what is wrong with me. I had told Rose that I feel pressure to write, to write more. Most of you write almost everyday, if not 3-4 times a week. I average once a week. Is that acceptable? I don't know. It really isn't to me. I feel like I am an insult and embarrassment to the rest of you. I feel inadequate. I'll tell you, I don't need any more help to feel like that. My inability to do anything useful because of my health is plenty enough fuel for that.

I know what is going to happen now. All of you wonderful, supportive, caring people are going to tell me it is alright and I am doing fine. Please know that I am not fishing for support. I am just laying it out there--what I feel. It is what this blog allows me to do. Be honest. Painfully honest.

I have found that my most recent posts have touched people in a way I had not imagined. I have been able to verbalize what some have been feeling, feelings they have not been able to express on their own blogs because of who has access to their posts. I have purposely tried to keep my blog as anonymous as possible so that I am able to speak my mind. I do not have anyone I can share these feelings with. You are my closest friends. You understand what I am going through, you know how tough it is, how painful and exasperating it is. You know the firestorm of emotions that I live with, that I must control. You know the unconscionable remarks and behavior of others I must endure because of their ignorance of chronic illness. And of their unwillingness to learn or to listen or to try, just try to understand.

I have not told any of my family how they can find my blog. Not even my sister who also has Fibro. I hope that's not too selfish. But, I need this for me.( She could start her own if she wants to. It wouldn't necessarily end up connected to me and my online group. I guess I would deal with it if it did.) If she read my blog everyone in my family would soon know what I had said or what I was thinking or feeling. No, she is not a gossip. You know how it is though, stuff just comes out. I cannot risk that. I need this lifeline.

So here, CJ. You have a new post, rambling though it is. Woo hoo for me. But, I do hope this explains a little bit more about me and about what has been going on with me recently.

It is what it is.

Hugs with fondness
and appreciation,


Wednesday, August 11, 2010

Let Me Introduce Myself...

Hello. I am CJ, let me introduce myself. I am an almost 56 year old menopausal (Does it ever end? Is anyone ever post menopausal?) married 27 years (holy smoke!!) homemaker with two children, 25 and 22 years old. I still call myself a homemaker though I haven't really fulfilled this role for four or more years. I call myself a homemaker on those forms that ask "Occupation"? I do this because I can't think of any occupation title that describes what it is I do. This would be because I am not sure exactly what it is I do... anymore.

I hear the phrases, "I am not my disease" "My disease does not define me". This puzzles me. I am thrilled for those that can say this, those that can think of themselves and not think of their disease. I am in awe of their mindset. I have not gotten there yet. I have not even driven by it, much less walked. I am in the the very the nose bleed seats...behind a column.

I am CJ and I have chronic illnesses. These illnesses, Fibromyalgia and Chronic Fatigue to name a couple, shape every portion of my life. I cannot think of me and not think of them. They have taken away so much of me. It truly is like a puzzle. I am the puzzle, a puzzle of many colors, of many small, sometimes oddly shaped, pieces. Fibro and CFS have smashed into the puzzle and have lost so many pieces that I am not sure if I can patch me up.

However, I am trying to put the puzzle back together, just like Ol' Humpty Dumpty's men. I am fairly certain it will not be the same shape it was before, some pieces are gone forever. Perhaps I can fashion some new pieces that can fit with the old. Maybe I can reshape some of these pieces to look somewhat like they did before, shape them well enough to fit in the puzzle.

If I am able to gather all of the pieces of me, how do I go about putting me back into some semblance of what I once was? My blog, CJ In Time has been surprisingly helpful in that effort. I am not sure what I expected when I started it, but it has become a lifeline for me. It began when I found "I Really do Miss Myself"(now Seeking Equilibrium). I could sure relate to that title. And, I found I could relate to Rose. And, Rose not only commented on my posts, she introduced me to other bloggers. I then found "Graceful Agony". This title I could not relate to...but boy did it intrigue me. How could anyone make agony graceful? Jolene has. And she has lifted me up, too, just like Rose, and Miss Dogkisses, and Lynn-Marie.

I have a long way to go, putting CJ together. Because of this chronic illness community of bloggers I am feeling hopeful again. One might think such a serious topic with such serious issues would be a total downer. But, we "get" each other. Even in our posts that whine, we get a lift. Someone always responds "I know what you mean" and, immediately we are not alone.

Hi, I'm CJ and I have chronic illnesses. But, I'm not whipped yet.

Monday, August 9, 2010

AARP or Bust

I don't know how many of you out there qualify for AARP. Those too young to know, that would be the American Association of Retired Persons. You only have to be 50 or over to qualify. I find that amusing because I do not know if there has ever been a time when one could retire at the age of 50.

Anyway, they put out this magazine bi-monthly, The AARP Magazine (real creative minds working there). There is always a smiling celebrity looking out at you from the cover. That is to remind us that, yes, even the rich and famous get old, but don't they look marvelous doing so. Last bi-monthly it was Valerie Bertinelli. I don't know about you, but I have had just about enough of good ol Valerie. She is everywhere--in a bikini! It is hard enough to get to age 50 without having that expectation hanging over your head. I mean really.

So this magazine arrives every bi-monthly, with a smiling celebrity, and I quickly peruse the cover and perhaps the table of contents to see if any of my maladies are listed. These would generally be ordinary old people maladies, not celebrity maladies. Most of the celebrities gracing the cover do not have maladies. They have causes and foundations and inspirational stories about how you, too, can grow old looking like them---if you had your own personal trainer, private cook, nanny, housekeeper, shrink, etc. Most months I merely deposit The AARP Magazine in the pile of newspapers to be recycled without having read anything.

This bi-monthly, for some reason, I flipped to the back of the magazine and caught a glimpse of some little tidbit, and no it was not High Grant--who happens to be turning the big 5-oh this month. He will undoubtedly be smiling out from the cover of a future bi-monthly. I digress. The tidbit: "Help! Should I Confront My Colleague?" Well, I am always up for a good soap opera and this had possibilities. Trust me, not a good read. However, across the magazine on the other facing page was Jane Pauley. Not the real Jane Pauley, but her AARP column "Turning Point". The article was titled "Meet a New You: a change in perspective reveals hidden strengths".

Now this sounded like something I should read. I truly wish I could reveal some hidden strengths. At this point I cannot see in myself any obvious, unhidden strengths. There is a definite value in re-evaluating your minds eye of yourself. That is, taking a good hard look at yourself and taking inventory of not just the dust and cobwebs of how you see yourself, but re-discovering those attributes long hidden under the piles of misery and frustration called chronic illness. Jane Pauley got me to thinking.

I then found other tidbits. AARP calls these "The Best of Your Life" - ha, little play on "the rest of your life", but they don't want to say that because, well you're over 50 and well, uh... So the other tidbits: "Flash: Money Does Buy Happiness", "Fighting the 40 Year Itch" with sub-categories like "Your Partner is Starting to Gross You Out", and of course Peggy Post with her column: "Oh, Behave!"

So these retired people apparently still have a life. And, their very own magazine with "tidbits" that are sometimes thought provoking, sometimes helpful: Peggy's bit was help on how to say"No" without being rude or apologetic to those that give you guff about you saying "No".

This little magazine offers tidbits that are little opportunities to try something new, consider a different point of view, make an effort to communicate in just a little different way that may open up a whole new line of communication, or take a look at yourself and discover that you are still a valuable person, aside from your chronic illness.

Next bi-monthly I will turn to the back of the AARP magazine and read about "the best of my life". I am still working on finding those hidden strengths. Jane got me to thinking that I truly might have some hidden strengths. By the way, did you know Jane Pauley struggles with bi-polar disorder? She knows the life of chronic illness, too.