Chronically, Chronically Ill

Being Chronically Ill is more than being sick chronically-- it is facing a whole new chronically Chronically Ill world. It is facing this world and being forced to become a resident at one of the lowest, if not the lowest, times of your life. It is being blind sided and shanghaied when you are so tired and the pain is unending and you do not understand what the hell is going on.

It is pain like you have never known. Where is it coming from, what is causing it? You cannot move without wincing in pain. Aspirin, Tylenol, Ibuprofen -- they are like water, they don't touch a thing. Nothing you do helps. Must be a flu. I'll tough it out. It will go away. It will go away. You don't know this world yet. But you will.

In this new world you will learn a new language. It is learning, or re-learning, how to do research. It is learning how to do research in this new language. It is reading articles online with one page open to a medical dictionary, one page open to webmd to help you understand what you have just read in the medical dictionary, and a word document open so you can cut and paste info to ask one of your many doctors what it truly means and if it has anything to do with you anyway.

It is learning the names and specialties of an ever growing list of new doctors. It is learning what these specialists specialize in and learning why you are so DAMN special that you need to see all of these new specialists.

It is learning the names, the spellings, the pronunciations, and the uses of an ever growing list of new medications. It is learning how to make a chart on a Word document to document all of the medicines you take, how much you take, who prescribed it and when, if you went off of it , why. Or, god forbid, learning how to make an Excel spreadsheet to keep track of all of the doctors, all of the medications, and all of the "conditions" you have now been special enough to have been diagnosed with.

Chronically, Chronically Ill.

And, this is only the foreword...

Depression or Reality check?

"I will never let go of

the fight to get well.

I will never let go

of hope that there will

one day be a cure.

I will never let go

of my "survivor" personality.

I will never calmly sit by

and give in to my pain.

I will never let go.

Period."

These words come from Rose. Rose, who always touches me with her words. Rose, who always checks in with me to see how I am doing--even in the middle of a family crisis. If you do not already read Rose, you really must. She gets it. She gets all of it, and she is still fighting.

I truly wish I could say, "Yes me too!", Rose.

But, I can -- not. I am feeling beat down. I have never thought of myself as a "survivor". I have never thought of myself as being strong--except when it comes to fighting for my kids. Do not cross me there.

I am feeling defeated. I have pretty much lost hope. I am holding on to what little hope I have by a thin, thin, worn and weary slip of thread.

I do not like feeling this way, but ... it is what it is.

It has been this way for a while. I don't think it’s my depression. It doesn't feel the same way. It feels like I have just come to face reality. This is my life. I am in constant pain. Pain that adds new body parts daily. A mere tap on the shoulder and I grab for my arm, wincing and trying to rub away the pain. And, the look from the person who just touched me. Puzzlement. Shock and surprise. And, then ... "You have GOT to be kidding!"

I am so tired, just so very, very, tired.

me,

CJ

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

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.

me,

CJ, in time

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.

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.
me,
CJ

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.

Medicine, menopause, and monsoon...

Do they do botox in your scalp? Really -- I am in need of HELP! Perspiring excessively from the head runs in my family -- my mother's side (thanks, Mom!). I began to do so when I was about 19 or so. It is not only uncomfortable, it is humiliating. Snicker, snicker, with a smile: "Are you okay?" "What happened?" "What's wrong with you?""Is it raining?" Me (embarrassed, mortified, fed up (with the sweating and the comments): "Its just me." "I'm fine. Its just they way I am."

Now, with all of the medications I am taking and this damn menopause (that they don't warn you lasts f-o-r-e-v-e-r!!) and the newly arriving monsoons with the accompanying humidity I look like I just stepped out of the shower from the moment I step out of the shower. It seems to get worse every day. Honestly, I cannot walk cross the room without working (??) up a sweat. I am miserable. And, I am moving to New Orleans in the near future. I am gonna die there. I am going to melt away like the wicked witch from the Wizard of Oz. Except they won't need to light me on fire. I will spontaneously combust! Actually I don't think I will make it to NOLA, I will melt away here in the desert monsoons.

Sorry, just had to bitch. I am soaked to the bone, hurt clear through to my bones, and I am bone tired. Again, I am miserable. Poor, poor pitiful me.

me,
CJ

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

fire storm or solar flare?

I am in a very, very long, intense flare, or as my sister (who has this nasty thing, too), says "firestorm" (much more accurate, don't you think? Or maybe even "solar flare").

I have been in so much pain for months. There have been no okay days. There have been no not too bad days. There have only been DAMN IT, I HURT days -- for months. I know it is stress. Way too much crap happening all at once. And, its been that way for way too long, too. One frickin' thing after another. Why does it go like this? Why is all of this happening to my family (I include my extended family, we make any soap opera look like Sesame Street)? Other families manage to have dry spells of misery-less-ness (I often make up words - the right ones won't come to me). Why the heck can't we just have one nice week of blissful rut-ness? You know--"I'm in a rut," people lament. They have no idea how lucky they are!

Along with the unending pain is an exhaustion I have never known before. It feels as though I have walked 500 miles. I feel so weak, I can barely raise an arm or a leg. It is all I can do to get from one side of the room to the other. And then I can hardly catch my breath. I know I am out of shape--okay there is absolutely NO shape, just a big, big blob of shuddering humanity -- but even at my worst before, I could breath. I am now developing a fear of suffocating, because sometimes I feel as though I am.

I genuinely feel sometimes like I am suffocating. But, there is also the feeling of suffocating under the weight of this chronic illness. I can't seem to make any positive moves toward accepting my life. Or, even figuring out how to live this life.

Michael J. Fox has been haunting me lately. That man is a marvel. I have been seeing him or hearing about him often the last few weeks. He was on "Rachael Ray". He is on the cover of Reader's Digest, "What My Illness Taught Me". Where does he find the strength, the positive outlook, the ability to keep going? He shames me. I am a sniveling coward and wimp. I haven't even gotten up the guts to read the article yet. He just smiles out at me from the cover. And I feel ashamed of myself. I should be able to do this. Other people do. Others go on with their jobs. They go on with their commitments. They go on with their life. Look at Michael. Smiling.