Wednesday, June 30, 2010

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.


Monday, June 21, 2010

The best medicine of all...

I am overcome with, I don't know with what!? Words, words won't come to me. I am overwhelmed with incredible feelings of gratitude, with a feeling of healing warmth, and with the feeling that I have been blessed beyond my comprehension and perhaps beyond my worthiness.

I am not sure why I started this blog. I liked playing around with the templates and all at first. I loved being able to read all of the blogs I found while poking around. I could relate so closely with so much of what was written. I decided to try writing a page myself... and along came Rose...who introduced me to Lynn-Marie and Miss Dogkisses. And, I found Jolene, Tamiko, and Naddya. What a huge, huge blessing you have all been to me. I honestly can't begin to thank you enough for all of your kind, uplifting words to me personally and for your sharing of yourselves with all of us who have been fortunate enough to have found your pages.

This is an incredible collection of women who are willing to share their lives, their experiences both positive and negative, their very souls, to others struggling with fibromyalgia and chronic fatigue, and many, many other forms of chronic illness. I have gained great insight from these writings and have developed great friendships with these ladies.

I am in awe to be included in a listing of blogs by Jolene, aka gracefulagony. Please visit her blog at She lists fifteen blogs that she recommends be checked out. I would list them on my blog, but I haven't figured out how to embed a website on my blog yet(!!). Such a newbie! Anyway, I have read several and they are all so different and informative and worth a read!

So, in case you haven't guessed it by now, YOU are the best medicine! All of you wonderful, kind, and supportive friends who cheer me on and commiserate with me. I could not make it thru some days without you. I wish I was as disciplined as many of you are about writing your blog each day. I know it would help me on days I am really down if I would get on my computer and at least read for awhile. I am always moved and often get a chuckle from someone's blog. Thank you fellow bloggers for all that you do to help so many. I am happy to think I have helped someone, too.


Sunday, June 13, 2010


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.




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.

Wednesday, June 9, 2010

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.




Tuesday, June 8, 2010

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.