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...

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

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

There, but for the grace of God...

I was reading another Fibro blog -- A Patient's Perspective on Fibromyalgia -- and she was talking about the effects of stress on fibro symptoms. How timely. I am a new blogger so not many follow my blog. Those that do are the cream of the crop, though! Anyway, I haven't written anything in almost two weeks. Did ya miss me? The effects of stress got to me. Big time!

I have, since February, been dealing with repairs on my house, needed due to the three leaks found in my roof--plus the ensuing mold. It is amazing how much mold we can grow in the desert. Since the discovery of these leaks I have had infernal machines running 24/7 x 90 some days, various forms and all manner of destruction in order to restructure, all manner of handymen in and out of the house, and all manner of "we also found..." or "this needs to be done before we can even begin to look at...". This nightmare began approximately one month after my husband packed up and moved out of state to take a new job. The plan was for me to follow after the house was sold. I figure at the rate we are going I will be joining him sometime in the year 2012.

During this same time, actually since December, I have been trying to get someone, anyone, to figure out what is wrong with my right foot that makes it nigh on to impossible for me to walk. You know another problem about having fibro? Now, any pain I have is chalked up to fibro (or the peripheral neuropathy). Well folks now four months later, No, it’s not the Fibro or the neuropathy, it is a ruptured tendon in my arch. Now starts the PT.

So my life has been hammering, sawing, stomping five days a week. Infernal machines 24/7 seven days a week. PT two days a week, sprinkled with an assortment of doctor appointments ("You need to exercise.") generally one a week.

I snapped under the pressure. And, I have MISSED you guys! But, I couldn't bring myself to write. What a wimp. Rose had her appendix taken out and she's still writing! Gees! But, the kicker was a Mother's Day story in our paper about a family of five who have been living in an old school bus since February, a step up from the month they had lived in their van, since they became homeless. And, the mother was just diagnosed with Fibromyalgia. Can you imagine? This week a program here, for homeless children, is moving them into an apartment and will help the dad find a job. Can I get an Amen? AMEN!

So, I am thankful for my leaking roof, because I have a roof. I am thankful for the noise and the handymen, because we can afford to fix our home. I am thankful that my husband is living out of state, because he now, after nine months of unemployment, has a job.

I have two fantastic children that make me proud, make me laugh; make me feel loved every day. I am in a flare of all flares, didn't do a thing but watch a marathon of Eureka on the Syfy channel with my son ( my daughter is married and lives out of state), but I had a great Mother's Day!

me
CJ, in time

Rose, I am so glad to hear you are okay. Don't try and come back too fast---TAKE CARE of yourself!!! HUGS!