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.

Hugs,
CJ

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,

CJ


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.

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?

me
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.

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,

CJ