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.

Do-overs

It is amazing to me how much all of us FM/CF sufferers have in common. We share so many of the same thoughts and feelings, coping mechanisms and non-coping mechanisms, ups and downs, ins and outs. So many of us are the Type quadruple A personality. We used to "do" and now we can't, and it makes it all so much harder. My family used to tell me I was burning the candle at both ends and in the middle, too. I was going to burn myself out...Do you suppose that is what I did? Burned myself out and now the jokes on me? OMG what a horrible thought! Can I have do-overs?

Many times over the last five years, egad! going on six years, since I was "labeled" as having Fibro I have wished to the heavens I could go back and take better care of myself , make better choices, evaluate and make better decisions. YOUNG PEOPLE OUT THERE--WARNING!!! YOU REALLY DO TAKE BETTER CARE OF YOUR FAMILY IF YOU TAKE CARE OF YOURSELF FIRST!!!

Another old joke: If I can't be a good example then I can , at least, serve as a horrible warning.

I am not, for one instant, implying that I think I brought Fibro on to myself. No, what I am beating myself up with is the fact that because I was in lousy shape before I got Fibro that I have made it triply hard to manage it now. I never dealt with stress so, as a result, I have several other physical conditions that are associated with stress and with not taking care of my health in general, like not regularly exercising, not eating healthy, and not dealing with stress!

Now those health problems are in a vicious cycle with themselves. The medicines cause side effects that aggravate this, which also makes that worse, and this issue makes it nearly impossible to exercise which affects my eating habits because I am depressed, which makes me eat too many carbs, which makes me gain weight, which aggravates those two problems which scares me and initiates the anxiety and drops me deeper into the hole of depression which affects my sleep that is also affected by the fibro and makes me sooo tired and the chronic fatigue and increased pain cause that last domino to tip and.....

You have self-imploding CJ.

Stop the world, I want to get off.

Later,

me

CJ

p.s. I have been alone a lot lately and have been quite introspective. Please don't think I am sitting back letting things happen to me. I have been observing and scrutinizing my life of late. I am still working on this "thing" and trying to determine the best way for me to attack it.

I have had a lot of input from family and friends and fellow Fibro patients. A lot. I appreciate the information, I really do. But simply because it worked for so and so does not mean it will work for me. I want to continue receiving the input, but please, all of you out there that mean well, give us information, support us, but please don't judge us.

This is a complex, confounding array of symptoms. It is debilitating and, as of today, incurable. It’s not possible that you used to have it, but now after your treatment you are cured. I am elated for you that you are no longer in pain from whatever it was you had. But, don't judge me because I don't jump on the band wagon of your "cure". I have tried so many, many things over these five plus years. I may have tried your solution, I may have not. And, I may have not because it is too expensive. It might not have coordinated with the myriad of other "conditions" I have. You really don't know and I don't want to list everything I have tried and you sure the heck do not want to hear about all the things I have tried. So, please continue to offer me information and most importantly offer me your support. But, please don't judge me. I am doing the best that I can.

If I'd known I was going to live this long.....

You know the old joke: "If I'd known I was going to live this long I would have taken better care of myself."

Truly, what a horrible thought. After the kids came along I never did take very good care of myself. I never took time for myself. I gave up regular exercise. We ate meals on the run from one activity to another--if I ate at all. Well, of course I ate. Late at night, when I was up not sleeping. And, of course I ate the most nutritious stuff! I remember vividly one spring night I had been up all night with a sick baby--chronic ear infections--and I "needed" something. And, what I needed was a Reese's chocolate peanut butter cup! So I went riffling thru my daughters Easter basket in search of an egg shaped chocolate Reese's peanut butter cup!

I should have taken charge then. What kind of reasonable adult steals from her child's Easter basket in the middle of the night??? I should have recognized I had a problem then. I could not handle stress. I was overwhelmed and depressed, but I could not admit that. I was Super Mom. I could handle it. I could manage everything and anything and everyone else's everything and anything. The load on my back just got heavier and heavier as the years went on.

I was on a very young spindly seedling of a tree with that heavy load. And now and again a branch would snap. I would snap. And I would make a grab for another fragile, spindly branch. I usually caught it and stuffed "whatever" into my ever increasing load. Stuff it. Stuff it. Stuff it. I never dealt with these things I stuffed. I was supposed to handle it myself. I learned that early on. I was the baby. My older siblings had "issues" and I didn't want to add to my parents already over full plate. So I took care of myself and stuffed. I stuffed all the pain, all the loneliness,all the unmerciful teasing I received at school , all of the incredible sadness I felt. It all went into that load and on to that tree. That poor Charlie Brown Christmas tree tree.

And then the dam broke and the tree was bent over, in peril of washing away. The load broke open. It all poured out in sickness --- physical ills, mental ills - paranoia and depression and anxiety and "acting out". I became someone I didn't know, behaving in ways I could not imagine. I was saved from total self destruction, but my load was still more than I could handle. I wouldn't, couldn't ask for help. I wouldn't, couldn't talk with anyone about my load. I again reached out for a spindly, wet branch. And I stuffed.

And here I am, thirty years later, stuffing. And I wonder sometimes, if I didn't set myself up for this life I have now? I would like to change things. I would like to be different. I would like to make things right. But, I know its too late for some of the truly important things. Damn it. I really blew it on some things. I really blew it with some very, very important people.

I feel like I am trapped under that load now. Everything shifted and it has all come down on me. I feel trapped under all of that stuff and trapped inside this very sick, very messed up, body.

I don't know if I can ever make it right now.

Later,

me

CJ

I could do without it...

I have been feeling kicked around by the universe.

I have experienced, as we all have, the many health "care" people who acknowledge Fibro as though they have a very bad taste in their mouth. Some simply spit it out, as there is no such thing. Some wince at the taste, okay there is some research and some fellow health "care" professionals believe there is something to this syndrome, but it still tastes bitter and makes them gag. Others do the tongue click thing--yeah, yeah you have it, but there is nothing I can do about it. Shuffle, shuffle, scoot, scoot -- me, out the door.

And now I am feeling a pull within the Fibro community. Am I taking an “easy” way out? (Like there is anything “easy” about Fibro!)

I have been feeling a struggle of whether to continue with my choice to use a traditional medicine approach to treat these symptoms of Fibro versus the notion and proposal by some of using a natural means thru yoga, meditation, acupuncture, vitamin and other supplements, getting off all narcotics, and something called “an adrenal fatigue supplement”. I have two people who are telling me they swear by the latter. However, as you probably know, health insurance does not cover any of these non-traditional means. I had a fabulous doctor, a physiatrist, two or so years back that helped me in many ways. However, it came to the point where he said that the only thing else he could do for me was thru non-traditional medicine. And, it was not inexpensive. As a matter of fact it was expensive. My husbands company was shaky at that time and we had two kids in college. You know what I chose.

Well, the financial situation is still not the best, with paying a mortgage on our home and the rent on an apartment for him, plus one kid still in college and me unable to work. So, what to do? Thankfully I have a PC who really is wonderful and supportive. At this time I can NOT imagine managing without the pain medications I take. Period. No question. I have been miserable the last two weeks with them, the thought of giving them up is scary and unbearable to imagine.

Does this make me an addict? Does this make me someone who is “wallowing” in their misery, in their disease? Does this make me lazy? Does this make me a wallowing, lazy, addict?

Today I don’t know. My neck and shoulders hurt so bad I can hardly stand it. The pain in my head feels like hot embers being seared in. I haven’t been writing on my blog because of the pain. And, I miss “venting” and having responses that say “I know what you mean.” “I am sorry you hurt.”

Right now I wish I could take something else for this pain. But, there is nothing left. I will go sit with the ice packs followed by the heating pad (in 95 degree weather!) and pray for some relief.

Does this make me an addict?

I truly don’t know. The emotional pain is unbearable. The physical pain is unbearable. I am watching the clock to see when I can take more drugs. Kinda sounds like an addict to me. Only I guess they wouldn’t watch the clock---they’d just take more…now.

Is that what separates me from the addicts?

What a s---- way to live.

Later,

me

CJ

Friends?

I ran into one of those "friends" that unceremoniously dropped me over a year ago. This was a group of seven "friends" that had been together for over five years, that emailed almost daily, that got together at least 2-3 times a month. This was a group of ladies I thought were forever friends. We would get the whole gang together with our husbands and go out to eat, watch the super bowl, etc. We talked about how we would still be together in our 70's and 80's. These were my friends.

And then I became depressed, seriously, critically, clinically depressed. Then the Fibro kicked in with a vengeance. I retreated. I crawled into a hole. I became a zombie, doing only what absolutely had to be done for me and my family to exist. And, only exist. The living, the life was gone.

Well, I guess my "friends" had enough. They stopped emailing. They stopped calling. They, as a group, decided I had "moved on". They, as a group, were no longer going to email or call or invite me to the get togethers. They, as a group, were through being my friend. Can you imagine? I did.

I pictured them gathered around the table. What to do about CJ? She doesn't email. She doesn't come out anymore. She must have moved on. We will, too. We will drop her as our friend. All in favor, raise your hand. Opposed? No? No. She is no longer our friend.

So, today this "friend" sees me for the first time in over a year. I am getting a pedicure (a luxury I allow myself every now and then). She is finished and comes over to me. "CJ, how are things?" Like nothing had ever happened. Like she saw me last month and wanted to catch up. She peppered me with questions. How's your husband? How's your daughter? How's your son? With each question I had to fight the tears back. I dug my nails into the palm of my hand. Harder. Harder. How could she act this way? How could she be asking about my family like she was still a part of my life? How could she act this way after the way she treated me? What the hell is a friend, anyway? Can I melt into this chair and get away from this pain? Does she not see it? Hear it in my voice?

No. She couldn't. I was the cashier at the grocery store - the woman at the dry cleaners - the girl who just did her nails. I was just another person in her day that required polite behavior. Just another faceless person to attend to when you are polite and behave with good manners.

She didn't see me. She didn't see the pain she was causing. The pain she caused. I have dreaded this day. The day I would run into one of my old "friends". Living in a hole left little chance that I would. I was safe in that hole.

And now I hurt. And I am so tired. I hurt physically and emotionally. I can feel the tension in my shoulders and in my neck. And in my hands, with the indentations of my fingernails deep inside my palms. I hurt and I have a headache. I have a killer headache from holding back the tears.

How could she not see?How could they not see? How could I be put out like yesterday's garbage? Gad, I hurt. I am so tired. I hurt. I hurt. I hurt.

Stress? Yes, it affects fibro symptoms.

me,
just me

but maybe, just maybe,
CJ, in time