Friday, September 24, 2010

From Jim: "Elephants, Snapping Turtles and Frogs"

You must rush over to my dear Fibro friend Lynn-Marie's blog. Her husband has written the most wonderful post titled, "Elephants, Snapping Turtles and Frogs".

I really do not have the words for a proper introduction. You simply must go read it for yourselves!

THANK YOU, Jim for sharing your thoughts, and dare I say feelings (!). You give the other side of the conversation a voice, a voice that is rarely heard and is so important.


Monday, September 20, 2010

Ten of the Many Causes of My Depression…

Not necessarily in any particular order:

1. Unrelenting,"Un"-curable, Searing, Aching, Burning pain, Each and Every Day, Day in and Day out…

2. Unyielding, Relentless, Exhausting, Fatigue Day in and Day out Each and Every Day…

3. Uninformed, Un-supportive, Presumptuous, Judgmental, Impudent Medical Professionals...

4. Judgmental, Un-supportive, Deserting, Vanishing Friends

5. Blood test upon blood test upon blood test, MRI's, x-rays, CAT scans, Nerve Conduction Study (NCS), electromyograms (EMG), Nerve Conduction Velocity tests (NCV), etc., etc., etc... All Tests Normal

6. Insomnia, Restless Leg Syndrome (RLS), Tossing and turning, Edginess, Un-restorative sleep, Up and Down All Night Long, Walking in my Sleep, Eating in my Sleep, Waking when I Fall...

7. Anxiety, Apprehension Uneasiness, Distraught, Tearful, Jumpy, Sensitive to noise, smell, touch, Ready to Jump Out of my Skin...

8. Loneliness, Despondency, Sense of Loss, Detachment, Self-made Seclusion and Isolation...

9. Failure, Useless, Hopeless, Inadequate, Ineffective, Afraid, Afraid of the Future...

10. Unfocused, Forgetful, Muddled, Disarrayed, Disorganized...

Depression rears its ugly head from time to time, most often without any warning. It is a constant battle. Unfortunately an unending one, much like Fibro and CFS.

Graceful Agony is having a Blog Carnival entitled "Who Turned Out the Lights?" examining the topic of Depression. It is very touching and thought provoking and most certainly worth your time.


CJ, in time

Saturday, September 11, 2010

An Open Letter To Celia

Oh. my gosh, Celia your symptoms (aside from the breast infection (?)) are classic Fibro. I was going to say so, but went on to read about everything else you have going on and I felt it best to wait for that resolution. Awful as Fibro is, you are dealing with much larger issues right now.

A primer on Fibromyalgia (by CJ, my opinion, my experience only):

  • You may or may not get the impression that it is "all in your head" from the first doctors you see. There are still some doctors who believe it is due to depression, unresolved life issues, and "soccer mom" syndrome. I recently saw another neurologist who was of that opinion. RUN, do not walk, away from them as fast as you can.
  • Your GP should be able to refer you to a Rheumatologist who treats Fibro. The search for an appropriate doctor may take awhile. Be prepared and try not to become too discouraged. They can say things that can beat you down, but stand firm until you get a reasonable diagnosis and treatment plan. There are some wonderful doctors out there that truly care and want to help you manage your symptoms and reclaim at least some of your "old" life. Take copious notes! Or have a trusted family member or friend keep them for you. But, you stay on top of them.
  • There are many approaches to treating the symptoms of Fibro. Some use natural or non-traditional treatments, herbs and the like. They may or may not work for you. Before trying any herbal remedy check with your doctor. One of the problems with herbs is that they can have very, very bad consequences when mixed with traditional medications. I am not dissing a natural, non-traditional approach at all. I am not promoting a traditional approach only. My experience has been that I AM IN UNBEARABLE PAIN. But, you need to know that I have at least two other serious incurable conditions that also cause chronic pain. I personally take four medications daily to manage my pain. Note I said "manage", I am still in pain each and everyday. The meds make my life livable (most days). I have tried both non-traditional and traditional treatment and I am using a combination of the two. How do you manage the unpredictability of the level of pain from one day to the next? Well, hopefully you have a "break thru" pain med that you do not take daily, only when you are experiencing a particularly rough day. This might be Tylenol 3, Darvocet, Vicodin, or Percocet. Take notes. Keep an up-to-date list of all of the meds--Rx or OTC--and the dosage you take with you at all times.
  • Yes, the fibro drugs can make you a stumbling zombie. Try and give your body time to adjust and give any meds a fair chance (within reason, of course.) Warnings are included with all medications: READ THEM. Log your symptoms of possible side effects and report them to your doctor. The pain meds for nerves cause sleepiness. It may take a few weeks or more to adjust to them. These meds can be dosed for once a day, twice a day, or three times a day, with one, two, three, or four pills each time. As I say, it takes time. BUT, do NOT ignore side effects. They need to be reported ASAP! Take notes.
  • You will probably need more than one doctor to manage this disease. Presently I have only two, my rheumatologist and my GP. But you may also see a pain management specialist, a physical therapist, a physiatrist (a doctor who specializes in physical medicine and treats the whole patient, not just the symptoms - I had a jewel of one, then insurance and finances stepped in!), or any of several other specialists.
  • Now the hard one: "When will the pain stop?" The truth, probably never. However, you will find success stories of people who have come almost full circle and rarely experience the fibro pain. Unfortunately, these are hard to come by. The pain can, however, be managed. Some days quite well, some days not so much.
I hate, truly hate, that I have made this sound like doom, defeat, and despair. But, Celia, it is one of the most incredibly difficult, exhausting, and depressing struggles a person can face. Now, before people start throwing things at their monitors: of course there are more serious, complex, and pain inducing diseases. But, this is not a contest. There is no reason to say "You think you have it bad?" Believe me, Fibro patients heap the guilt upon themselves about this all of the time. We know there are people out there facing much more dire diagnoses with much less positive prognoses. Fibro is not fatal. We know all of that. But, Fibromyalgia is a serious condition. It is chronic and incurable. It is extremely painful and exhausting.

I am praying for you in all manner I can think of. I am here for you. I hardly know you, Celia, but you have touched my heart in a very special way. I care and I would like to help in any way I can.

Gentle hugs with fondness,


A Disclaimer to anyone else reading this: I am not a doctor. I am not prescribing nor am I diagnosing anything. I am a Fibromyalgia and Chronic Fatigue patient. PLEASE, see your doctor if you have any concerns or symptoms.

Friday, September 10, 2010

Thank you -- it's all I've got

I want to thank all of you who have commented on my blog of late. And, thank you to those signing up to follow my blog for that very special gift.

I have been, and I still am, in a very hard place. Your words have comforted me more than you could know. Its funny, I really don't find it difficult to open up here in this place of absolute wide open public exposure. I find that rather astounding, don't you?

Well, you shouldn't. It is because of you that I feel safe and protected and un-judged. Yes, I know there is no such word (well, in most dictionaries), but there certainly is the feeling. I know that no matter what I say, you will not judge me. I am simply saying how I feel and what I am thinking. Unvarnished, unadulterated, bold faced truth. My truth, anyway, at a given point in time. And, I thank you so much for allowing me that. Somehow it lifts some of the weight of the unending pain and exhaustion.

Your comments don't make the pain go away. They don't refresh the unyielding fatigue. But, they sure do fill me up. They fill me with up with a warmth of support and understanding. They make me smile, they touch my heart. They do revive me to fight thru another minute, hour, day.

So, thank you. Thank you 100 times over for taking the time to leave a little bit of you with me -- to help me persevere, to keep me company, if only for a moment, and to help me lean back from that slippery, dark, deep hole.

Thank you.

Saturday, September 4, 2010

Is there a point?

I am having those thoughts when I really wonder if its truly worth it anymore. I hurt so much and I can't sleep and I am way past exhausted. The meds barely take the edge off. The side effects of weight gain, excessive perspiration, swollen legs and ankles make me totally miserable and a horrid sight to behold. I am 100 pounds over weight and because of this damn health of mine I can't make a dent. I have tried. I have tried! (That "!" is for the people who give me the look "What a lazy, fat slob with no self control.")

What is the point in living this way? I am barely able to do the stupid little things everyone must do--grocery shopping, going to the bank, paying bills (hopefully on time), laundry. That is it. That is pretty much my life. The rest is spent sitting on the couch watching TV. It hurts to hold the phone up for very long at all, I'm on my 8th or 9th set of head phones. It hurts to hold up a book, a magazine, a newspaper. It hurts too much these days to do this--type or browse on the computer. My neck and shoulders are on fire with pain. My shoulder muscles are hard as a rock, my neck pinches with every move.

What is the point? I am soon to be 56 years old, but I feel 86. I truly think I should stay put and let my husband start a new life in New Orleans. If I suggested it he would say no way, because he is that kind of guy. But if he was honest with himself he would love the opportunity. I am not the person he married, have not been for years. He would not be leaving me, he'd be leaving what I have mutated into.

I hurt in every cell in my body. I have already taken all of the medicine I can. I guess I will go for the ice and heating pad and maybe a rum and coke. Yeah, I know what most of the 24 meds I take say on the bottle. But really, what possible difference could it make?

CJ, lost in time

p.s. Don't call the cops. I will not do anything. My son and I live here alone and I would never do that to him.