Saturday, May 29, 2010
The word makes me shudder just thinking about it.
But let's just start out simple.
Let's tackle the car.
The car shouldn't be a big deal, should it ? It shouldn't be but it is. I'm not talking about the simple act of getting in or getting out, although some of my more graceful moves would put any celebrity car shot to shame. What should I talk about first? Falling out of the car? Forgetting I had on a dress when I got out of the car? Nope, let's start with something better than that.
Let's try rolling up your window with your head still sticking out of it.
That's always a good one.
Fibromyalgia has so many symptoms to recommend it. Personally, I love the fog. It has me looking like the village idiot, wondering what my own name is and my personal favorite, rolling up a window with my head still in it. You would think one would know that it wouldn't be a good thing to even put your fingers near those buttons while you're talking but I did it. It doesn't do your self-esteem any good when your friends are laughing hysterically while your hair is being sucked up into the window. To top it all off panic ensues and all you have to do to stop this fiasco is take your finger off the control. Simple, isn't it? You would think so.
The second maneuver that I love is craning your neck around to see if anyone is behind you while backing out and/or changing lanes. Now, I don't know about anyone else but my neck is an area that hurts me a great deal. I feel like irobot and move in about the same way. I can't really whip it around like I used to so I tend to act like the little old ladies I used to curse at while driving. At least I can still see over the steering wheel.
Then there's also the actual stress of the roadway. I'm still a Type A personality and after I get going the speed limit is like suggested retail price; it's up to negotiation. I'm one of those people that think the roadways can be categorized. There's the slow lane, the I can't make up my mind lane and then life in the fast lane. If you're in the fast lane I don't think you should be going 5 miles under the speed limit. Well, let me re-think that. I don't think you should go the speed limit either. So driving can cause me a great deal of stress. It doesn't even help if my boyfriend is doing the driving because he always drives 5 miles under the speed limit so I usually sit there stepping on the imaginary gas pedal like crazy on my side of the car. I think that part of the carpet is worn out from me punching that pedal. Is that stress? Ya, think????
We all know that stress can cause a major flare. Maybe that's why I live in flare city. So when I travel, even if it's by car, the fibromyalgia has dealt me fits. Sometimes I don't even remember what I was going to do when I finally get to where I wanted to go. I've arrived at the grocery store and just sat in my car because I've forgotten my list and I don't remember what I wanted to buy. By that time it's like........."oh hell, I might as well just go home."
By the time I do get home I would just rather get in bed and watch Oprah. I think she's got a show about stress on soon.
I should get a guest spot on that one.
Friday, May 28, 2010
I guess I should be thankful.
I got a couple of days where I felt almost
Well, lookie here. It's 4 in the morning and I've gotten maybe 2 hours of sleep. Great. Now I'm up and I hurt. I've taken melatonin and medication and zip-a-dee-doo-dah. I actually fell asleep before I could post what I'd written earlier. So I guess I'll post it now.
The old familiar ache in my hands started and I wasn't even conscious that I had started rubbing them. I finally snapped to it and wondered why it was happening.
The old familiar ache in my hands started and I wasn't even conscious that I had started rubbing them. I finally snapped to it and wondered why it was happening.
First of all, I checked the humidity and it had gone from about 10% to 35%. Yep, that will do it right there. Add to the humidity factor the other stresses going on right now and here we go!
I am so sick of this pain. I think I'm going to try Corvalen-M by Bioenergy. Dr. Teitlebaum talks about it in his book and, well, it's worth a try. It's a mixture of D-ribose and magnesium. It is supposed to reduce the pain and increase the energy levels. The only thing I can say to that is that I know it will increase my energy otherwise I'd be comatose. In other words, there's nowhere to go but up.
The constant pain is getting to me.
I'm tired of getting on the roller coaster and then praying to get off. I'm tired of being tired and I'm really tired of the pain. I get tired of saying how bad I feel when someone asks "how are you?" Right now I'm in a really pissy mood because the pain is building again and I just want to curl up around my body pillow and pray for sleep and I know that it won't happen. I think I'll take the medication and a melatonin and see what happens.
Maybe if I catch a couple of hours of sleep I'll feel differently. I feel like a wimp. A big, fat wimp.
And really pissed off. It should be a dandy of a day.
I guess it's time to put on a movie..............(huge sigh...............)
I guess it's time to put on a movie..............(huge sigh...............)
Wednesday, May 26, 2010
It's amazing the things that we think are so important when we are younger. Gosh, my poor ex-husband. I was carrying baggage I didn't even know I owned and the poor guy got it all dumped on him. It was no wonder everything fell apart because I had no clue how to be happy, let alone how to be happy with someone else.
I thought getting married would be wonderful and it was; but, I wasn't satisfied with that. Everything I knew in my damaged psyche said that this wasn't going to be permanent. I didn't even realize was that I was carrying around that little fact. So instead of waiting for the heartbreak I was positive I'd eventually feel, I shattered and sheltered myself and I blamed it all on him.
It had been a long time since I'd had a mother and the wall went up against his mother right away. We didn't fight or dislike each other, it just wasn't affectionate or real close. She was strong, opinionated and a real pioneer. She was the brains behind the operation and she did exactly what she wanted. She was an avid traveler and well read. She truly was an amazing woman and I wasn't able to see past my insecurities to see that until much later.
She died yesterday morning. She was in her 90's and had lived a full life that included the joy's and heartaches that life brings. She buried her only daughter. Only later when I had my daughter did I realize what that must have meant in her life. She kept that inside but I'm certain that the indescribable pain of that event never left her.
I know that she's in loving hands. I know that it will be hard for my ex-husband because no matter how old we are there are always times that we want our mothers. Even now, especially when I don't feel well, I wish my mother were here. It gives you a different outlook on your life when your parents are gone. For a long time you feel so alone but there is a peace and a knowledge that you'll see each other again.
For my daughter, she's lost the only grandmother she's ever known. I would hope that this event will bring her closer to her father because family is everything. They need each other more than they realize and they're both stubborn about reaching out for each other.
So God Speed to a remarkable woman who perservered and prevailed. She truly was a great lady.
So God Speed to a remarkable woman who perservered and prevailed. She truly was a great lady.
Tuesday, May 25, 2010
I hate it.
I'm tired of being the grownup.
I'm very tired of having to put on my big girl panties and suck it up.
Why is everything a struggle?
Down to returning an item through UPS.
I mean, I still am ambulating through the umbrella of pain. Make no mistake about that one. The pain levels may have subsided but it never goes away. The weather the last couple of days has been sunny and semi-warm so for the first time in ages I feel sub-human. Believe me, that is a HUGE step up!
I had my home broken into a few months ago. I didn't blog about it because it was too new and too raw. You feel too violated. Then to top it off the police did nothing. I guess I've watched too many episodes of Law and Order. I asked if they were going to send someone for fingerprints. They looked at me like I was crazy, handed me the report and said, "turn this into your insurance company." That's it. I left for a couple of hours and when I got home my home was ransacked. The thing that pisses me off the most is they got my DVD player that was filled with movies and it was one of the Sony 400 disk changers.
I hate thieves. Anyway, I had a camera stolen as well so I had it replaced through the insurance company (remind me to tell you about that one). I got it in the mail two days ago. I'm excited! I've missed my camera. It's a digital SLR and I'm an old photog buff. Anyway, I open up the carton and assemble the camera and lens and start to put in the flash card. Will it go in? Nope. So I take the card up to Best Buy and they put it in one of their display cameras and it goes in like a champ. So I come back home and try it again.
Now I have to call the insurance company and go through all of this rigamarole for the return. I take the package to the UPS store and they tell me the label that was sent will work but it can't be scanned. Okay. Now I go home and call the replacement center and tell them what was said. Oh no, no, no. That will never do. I must try again or go get the package because it must be able to be scanned.
Now I start the process all over again. I feel like crap and with every trip I have to make it hurts even more. In and out of the car. Why can't things be simple? Why must everything be done over and over again just to make it right? I get so tired of this kind of stuff because I have no patience left. Why does everything test me to the limits of my patience? What am I supposed to learn about all of this?
This is just the tip of the iceberg. There's the pain, family issues, personal issues, financial issues. You name it and there is an issue for it. You know that suffering builds character? Well I'm sick of building character.
AFGO you ask?
Well, it's just...........
Another F**king Growth Opportunity.
Sunday, May 23, 2010
You have just got to love irony.
Whenever I USED go out of the house my hair was ALWAYS done and I had on makeup. One of my greatest pleasures in life was frequenting the makeup counter at Nordstrom's. I could just float around that place for hours. Plus, I just love makeup. Mac, Philosophy, Bare Essentials and Donna Karan perfume is just yummy to me! Under my sink I have a huge bag of eye shadows, liners, blushes and lipsticks. Nordstrom's and QVC.........life was good! To me, one can never have too much makeup.
Also, I've always been big on upkeep and maintenance. I loved manicures, pedicures, massages and facials. To me, there's nothing like pampering myself. I'd get my nails and toes done every two weeks. However, that was before. It was BF (before Fibromyalgia). Now, I even though I love facials and massages I can't stand to have that kind of pressure on my back or face. It hurts to have my nails done so I stopped that. Pedicures hurt too. Giving up all that really helped tank my self esteem. I look at my short, stubby nails and then my hands and hate them.
Lately, I've just felt so lousy. Today is cloudy, humid and cool. Every bone in my body aches and I just want to put the covers over my head and go to sleep. But I can't because I want to get out of my house even if it's just for a few minutes. I need some things from the store so I won't be gone long and then I'll come home and go back to bed. I must force myself to do this.
I threw on a pair of sunglasses and brushed my hair and put it up in a little clippie. Add a little lip balm and there I go. No biggie.....who the hell would I run into anyway? So what are the odds that on the very day that I'd be so sick of staying in my house, and deciding to take a chance and get outside, that would be the very day I'd run into my very first boyfriend. There I am at Smith's Grocery Store looking like something the cat dragged into the house, trying to lift my spirits just a little, when I happened to glance behind me and voila! There he was. I would have recognized him anywhere. He was tall and had gray streaks in his thinning black hair. He was also a bit more wrinkled than he used to be. He was in a pair of sweats and looked like he was just off the tennis courts. If truth be told he didn't age very well. He had gained weight and just looked average instead of the drop dead gorgeous that I remember. Any other time I would have taken a great amount of joy in that fact but right now I would have been embarrassed in front of the hunchback of Notre Dame. I immediately went into fervent prayer and prayed that he wouldn't notice me. I made all sorts of deals with God if He would just let him pass without a word. I turned my face away, hid behind the flowers and pots, and waited for him to move to another part of the store.
As luck would have it, he started moving toward me and looking at the huge flower pots. Could it have been any worse? Yes, it could and it was about to. I lost my balance and nearly fell over.
I kind of skirted around him without making eye contact and nearly made it out of the store.
Notice I said "nearly."
Whatever in His name possessed me to look back? I could have pulled this off if only I wasn't tempted to look back. I DO NOT believe I did that.
"Is that you, Rosie?"
Yup. It's me. I just looked at him ready to give the oh-what-a-surprise-look and then the brain fog hit. Instead, I just looked up at him like a fool. I wanted to say something but I couldn't think of anything to say.
Fortunately he was never the type that noticed what I was wearing or anything about my hair and today was no different. He just wasn't that type of guy. We exchanged pleasantries and I couldn't wait to get out of there. I said goodbye and, for the first time in months, practically ran all the way to my car. I couldn't believe he saw me that way and then on top of it all I acted like the village idiot.
There is a silver lining to all of this. I learned something important about my values today.
I WILL NEVER, EVER GO ANYWHERE WITHOUT MAKEUP AGAIN.
Saturday, May 22, 2010
Friday, May 21, 2010
Pick a word
Can you find me?
No question about it. The last week has been awful. The pain has been out of control and I don't know why. The weather did change and it went from the 80's and 90's to the low 70's. The wind keeps coming back and it's strong.
Maybe that's it.
I have no clue.
All I know is that this flare has been a doozy.
I've tried warm baths. I've got a jetted tub but that doesn't help. I tried dipping my hands into warm wax but that doesn't help. I've tried ice and that doesn't help. I've sat in the shower until the hot water had run out. I've curled up in a little ball in my bed and cried.
So what do I do?
I guess just tough it out and take the pain pills and muscle relaxers.
My daughter called and asked how I was feeling and I couldn't tell her the truth. She knew the last couple of days had been real bad and I couldn't tell her today was more of the same. Today has been a tad better so it wasn't a total lie. The last couple of days were a 10 on the pain scale and today was a 9 so I can justify it; can't I?
So I'm back to rubbing my hands because they hurt. I'm back to hardly walking because it hurts. I'm back to hardly sleeping because when I move in what little sleep I do get, it hurts. The fog has returned with a vengeance.
Oh well, I'm back in bed watching Kitchen Nightmares. I love Gordon Ramsay and can't wait for Hell's Kitchen to start! I'm surrounded by pillows and all I can say is thank heaven for my comfortu pillow because I will probably be watching movies all night. Sleeping tonight is out of the question.
Hey, it gives me something to do................(sigh)
Thursday, May 20, 2010
It's been one year
One year has gone by since I received my life sentence. One year has gone by since the cell doors slammed and my life would forever change. Even though the symptoms started a while before it's been one year since I heard the word Fibromyalgia. It's been one year since I decided that I needed something to do that would help me process everything that was happening to me. I remember getting started. I knew I needed an outlet for the frustration, fear and the myriad of issues that I have going through my head. I got on my computer and googled blogs. Thus started my journey that has led me through the pain of Fibromyalgia to the joy of knowing that I am not alone.
I didn't know where I'd go with this post. I didn't know where I'd go and I most certainly didn't know how I'd even write it. The pain has been so intense the last couple of days I wasn't sure I'd be able to type anything plus I've been in retreat mode. The last post was such a struggle. It was struggle both physically and mentally and I prayed I'd be able to get it together to do this.
My first post was about my Type A squared personality. I guess even when I was young I was a real pain in the ass. When my mother would say I've hardly touched my food, I'd put my hand on it and say, "there I've touched it." When she said there were starving people in China, I'd look at my untouched food and offer to send it to them. My name should have been PIA (pain in the ass).
My initial goal was to find out all that I could about the disease that was robbing me of my life. All I knew was that I hurt; and I hurt real bad. I'd always managed pain. In a recent post I mentioned that I had stitches on a table when I was four. What I didn't say was that I was carrying a glass bowl full of potato chips in to my dad and uncles. Klutz that I am, I tripped and went face first into the bowl. In the ensuing panic I was the one that was calm EXCEPT when they wanted to take me to the hospital. I guess I freaked then. The doctor threatened me and said he was going to stitch me up right there. I got up on the table and laid there. He said again that I'd have to go to the hospital if I moved. Evidently, I didn't move a muscle.
I've always been able to breathe and talk myself out of pain. I don't know how I was able to do it but I have done it since I was very little. Maybe because I knew it was a transitory kind of pain not a chronic one. Who knows?
I could do it then but I cannot do it now.
Also, what I hadn't expected was how sleep deprivation would affect me. I've always been able to fall asleep at the drop of a a hat. I would also STAY asleep. A bomb could go off in the room and it wouldn't disturb me. It didn't matter what happened during my day because I could take a warm bath and drift off to dreamland and wake up refreshed and renewed. The insomnia bothered me so much because it was new. Pain had always been there and managed but sleep problems?
Not me. I could fall asleep standing up.
I was so frightened by what was happening to my body. No sleep and out of control pain. Then, the piece de' resistance was the brain fog. I've read, and loved, contracts all my life. I could take them apart and put them back together better than they were before. It was something that I really enjoyed doing and I was good at it. I loved new home sales and even though the management sometimes sucked it was a real high for me to put together communities. I could remember the names of people in all my communities and where they lived.
Nope. Not anymore.
That was gone too.
So as the fear kept building I kept reaching deeper and deeper inside to write about issues I'd never had the desire to face before. As I wrote there were things I'd never faced and also never known was buried deep within. The dark side of depression was creeping up because of the pain and I wanted to purge myself of anything that might hamper my ability to beat this disease. You see, I haven't accepted that I will be living like this for quite some time. I haven't made it through all the stages of grief and I keep repeating a few stages like some never-ending loop. Is it the pain that causes depression or were some things that were always there? I was always a happy person and loved to laugh and smile and I smiled a smile that reached my eyes.
That too, is gone.
I introduced my daughter and it was a pleasure to write about how much joy she's brought to my life. Truly, I have had a ball raising her. She's got a unique way of looking at the world and as trying as parenthood gets at times she could say or do something and I'd be doubled over in laughter. I look at her face and wonder how I got so blessed. Nothing else in this life could have ever given me more.
That will never change.
I found that there was a theme running though my posts of denial and anger. I can't stand, and still can't accept, that I will not be able to live a high intensity, high stress life of a new home sales agent. I'm angry that getting rear-ended in January of 2008 sent me spiraling into the black hole of Fibromyalgia. I know that there are sufferers out there who have overcome the pain and live a great life with few flares. I want to be one of those people but I'm nowhere near that yet. I feel like a big, fat lump instead of the woman who thrived on the intensity of selling.
Nope. No way and no how.
I was so excited when I got my first comment and follower. WOW! That was so cool! Maybe, just maybe, I wasn't alone in this after all. There were people out there who felt just like I did. I felt like I had a lifeline and I grabbed it and held on for dear life. I was in love with blogging and it filled up a void that I didn't even know I had. Before I started this I had never read a blog. Really, I didn't even have a desire to read one. Now, that's how I start my day.
Then I met three special women and have helped me more than they can ever know. I've never met them face to face but we've met heart to heart. I've said it before but I can't let my year anniversary go by without saying a special thank you again to Lynn-Marie, Michelle and CJ. You guys have really made this special. We've got the same issues and problems. We hurt, cry and laugh through the posts that bare our souls to the world. We all have family and friends that we've grown up with but there is something special that is shared when this illness strikes. It sounds trite but unless you have felt this down-to-the-bone-agonizing-ache-and-pain you don't understand how someone can tolerate this day in and day out. It's also hard to understand how this changes you. We would all love to turn back time to the day before this all consuming pain hit us. But we can't. Ain't happening.
So to the women who have helped me make sense of this crapola in my life....thank you and I hope I've helped all of you in some small way.
So it's one year into this life sentence but hallelujah.......I've got cell mates!
So here we go into year two.
We can do anything as long as we have the people we love and friends by our sides.
Tuesday, May 18, 2010
Everything has become a struggle.
Pain does that.
It still hurts so much
Lately everything seems to be an uphill battle. Everything seems to be a struggle. Everything seems to be a climb. It's hard to put one foot in front of the other and just move. I force myself to get on the stair climber and get even a few minutes just because it's supposed to be good for me. I guess every little bit helps but I haven't seen that yet. Is it because this is so recent? I have said it before but I truly believe the accident that I had in 2008 was the trigger that sent me over the edge.
I haven't been sleeping lately so the loss of sleep will equate to a day of increased pain. Even when I do sleep I don't sleep. It's the kind of sleep that doesn't restore or refresh your body. It's the alpha waves intruding into your sleep and you don't get a chance to fully slip into deep slumber. Lately the pain has been off the charts. I've gone from a moderate level of pain into the more severe levels. Even my dog H doesn't want to be on the bed with me. Usually he whimpers and looks at me with those big eyes until I lift him on the bed. After I do that he curls up next to me and starts to snore. Now, since I thrash around trying to find a position that is comfortable he can't stand to be up here with me anymore and retreats to his bed where his highness won't be disturbed.
When I'm like this I don't like to be around anyone or talk to anyone. It all just seems like such a chore. I wrap the cloak of pain around me and retreat into a place where I can be alone with it. No one should have to be subjected to me when I feel like this. Even the writing, which I love and keeps me somewhat sane, has become a struggle because of the pain in my hands.
I tried moving to the shower. Let me rephrase that. I crawled to the shower. Usually I find refuge in the car wash. The car wash is my pet name for my shower. I installed adjustable nozzles that hit the small of my back. I also have a large rain shower head and a handheld. Thus the name. I can spend a tankful of hot water in there and usually emerge energized and refreshed. The hot water usually feels so good and it helps loosen up the muscles.
Nope, not today.
I've heard that I need to try meditation. Breathe through the pain. So far it's not working. I really hate to say it but I've never done well with that. I have been able to manage pain my whole life starting by getting stitches in my head on a kitchen table when I was four. That isn't the answer. Spending 20 minutes meditating does nothing for the long term management of pain. Sorry. It doesn't help me sleep either. It gives me a very pleasant feeling of relaxation but other than that....zip...nada...zilch.
I know the weather also affects my system. I can feel the barometric pressure move and any change in the humidity can be measured by the increased or decreased pain that I have. The humidity has increased from sixteen percent to a little over twenty percent and I can feel it but it isn't enough to cause the levels I have right now.
So is it just a random flare?
Am I missing something?
I haven't done anything out of the ordinary and I haven't eaten anything weird.
If I have to climb this particular mountain all I can say is I can't wait to reach the peak and catch a glimpse of the view of the beautiful valley that awaits me below. Of course by the time I get to that point I'll be sliding down to the valley on my a** because I'm so tired of standing upright.
I haven't written anything in a couple of days.
Because I hurt.
The weather has changed again. This does not bode well for a good nights sleep and no sleep equals more pain tomorrow. My hands hurt like hell and typing just kills me right now. To top it all off I had a whole post written and I don't know what I did but it wouldn't let me edit it and when I logged back in, it was gone!
Kind of sounds like my life.
I logged out due to the Fibromyalgia and when I logged back in my life was gone! I am sick of being sick and tired. I keep trying to find the balance but I'm out of balance. I feel better when I rest but I'm tired of resting. I feel better when I can get some sleep but it's very difficult to get any sleep. I feel better when I get around people but I hurt so bad right now that I don't want to be around anyone.
Did I say balance?
So I'm going to take more pain medication, a muscle relaxer, some melatonin and see if my eyes will close. I know I should turn off the TV but then I'll be in the dark with my eyes wide open. I've got crisp, cool and clean white sheets that have been sprayed with just a touch of lavender and chamomile.
This should be sleep heaven.
But it isn't.
I'm tired and fatigued and can't sleep. My body aches deep down with that lovely bone chilling ache. My hands feel arthritic. The muscle spasms in my legs are starting so I better pop that medication before it gets too out of hand. So tonight not only can I not fall asleep, I'll be willing to bet that the alpha wave intrusion will rear it's ugly head into whatever sleep I do manage to get.
So to all who did sleep.....I envy you.
Friday, May 14, 2010
I've tried to find God's grace in the midst of a trial by fire, I really have. In the fleeting moments that I have reached that plane I was at peace but all too soon I, or it, fell away.
The humidity is up a little bit. I can feel even a minute change in the levels. It causes all sorts of pain and I may just be having a bit of a flare. My stress levels have also been a tad high so it can be any number of things that is setting off this round of pain. Pain wants to break your spirit and it's come close but I won't let it.
But back to grace.
What does it take to immerse yourself in peace? I've never been religious but I have been spiritual. I have felt God's presence in my life at the time that I needed him the most and I'd love to feel that way again but I haven't been able to get there. I realize that there is a purpose for me and for this syndrome that plagues me.
My faith in the medical community is almost non-existent. My daughter got the okey-doke shuffle from an endocrinologist yesterday. She's had some of the same symptoms that I've lived with. She went to the doctor to go over the test results. Although some of the blood was abnormal he chose to dismiss her and her symptoms saying she was too young (29) for problems and she's getting older (believe that??) so her inability to lose weight could be due to aging.
I got really irritated hearing that! This is her first go around with the dismissal of the medical community and it really disturbed her. She was angry, frustrated and near tears. As much as you don't want them to find anything you want answers. You want to know why you feel the way you feel. I can't blame her. Now it's a search for a doctor that understands fibromyalgia, thyroid and adrenal fatigue. Where to go in this search for wellness?
Anyone with a chronic illness needs to find sustenance to help guide you through the pain, frustration, despair and disappointment. When the symptoms increase it helps to lean on another's shoulder. It helps to find your life purpose when pain is all you can think about. During these times you are lead away from toxic people. Your body and psyche cannot function under the stress of people who's design is to destroy your soul.
My small prayer is to look up for my redemption. He knows my trials, pain, suffering as well as my joy. I chose to take comfort in the fact that he has allowed this to bring me into a closer relationship with Him. I just need to remember that.
He has never forsaken me.
Wednesday, May 12, 2010
I feel like roadkill.
Tired of being tired.
I went out today and drove across town to get information about the support groups for Fibromyalgia in Las Vegas. The drive bothered me more than I thought it would. Between the Fibro and the appendix it kind of knocked me out. The group had a table at a supermarket in Henderson. I parked the car and walked in and looked around. I finally found the table at the other end of the supermarket. If I hadn't known it would be there I would have missed it. Honestly, I thought there would be more fanfare. I'm used to doing things on a grand scale. I'd be pulling people in talking about this disease. I liked their location and hopefully a lot of people stopped and asked for information. I'll be going tomorrow to the luncheon and meeting all sorts of people that are suffering with this invisible syndrome. I need to get out of my house more, so this will be a good thing.
I'm a little unsure of meeting new people. Weird, because that's all I've done in my career. Being in sales everyone was new. Every meeting was an encounter and I loved getting to know people. I don't know what this has done to me. Is it because I've been so isolated for so long? Maybe that's it. Part of me is afraid I'll need to give something and I have nothing to give right now. I'll just wing it and go see what is up. Maybe I can offer suggestions........well, maybe I shouldn't do that. I have a way of taking over so I'll be a good girl and keep my mouth shut.
Am I rambling?
My stomach wasn't hurting nearly as bad today. This appendix thing has really knocked my lights out and it was nice not to walk hunched over like a little old lady.
So what did I do?
I decided to change my sheets and do laundry. Then I vacuumed the floor. That was it. Done for the day and I got back in bed. Geez, you'd think I'd run a marathon. What is it going to take for me to have a normal day without feeling totally wiped out? My niece said it will take awhile for the incisions to heal from the operation. Am I rushing it? Okay, but I still can't get through a day without resting every hour.
So I'm back in bed.
Feeling like roadkill.
Say goodnight Gracie.
Today is the day to bring to light
A disease hidden in the darkness
The invisible disease
Hidden by others and even ourselves
I'll be off today driving to both places in Las Vegas that are passing out information so that people are aware of Fibromyalgia.
Even though I really hate the Lyrica commercials ( I mean, REALLY, who actually looks like that ) it has done a great deal to establish the legitimacy of the disease. The problem with the commercials is that it makes the pain seem like some casual annoyance.
Kind of like a fly that can be silenced by a swatter.
The pain is unbelievable at time. Let's show that face to the world.
Let's take the worst flu that you've ever had. The down-to-the-bone aching that keeps you in bed swearing and making deals with God if this pain will just go away. The good thing is that in a few days you're up and feeling good again. Try feeling like this for a week, a month, a year and then years. You get the picture.
Let's imagine getting beaten black and blue with a baseball bat. Then try imagining that this would feel good compared to the pain that is ever-present in your life.
Let's try to imagine something painful that we've gone through and then try to imagine that the pain will never go away and that there is no cure for it.
Then try to imagine that no one believes you.
Tuesday, May 11, 2010
It doesn't take much to lift me off the table.
Pushing on the tender points will just about do it.
I've heard good and bad stories about the Fibro and Fatigue Clinics. My experiences with Dr. Alina Garcia have been wonderful. She's been a very straight shooter and I appreciate her so much. The only downside is that they don't take insurance. I will tell you this:
FIBROMYALGIA ISN'T CHEAP.
Take today. 300 bucks later...............
I went in and had to update my status on my trigger point tenderness. God Bless her. She didn't need to press very hard. She could tell by talking to me how I was doing. I had her laughing about the appendicitis and she put me at ease about the test. I haven't really improved since I saw her last. They put a lot of stock on supplements. While I agree that they can help you a great deal, I do not believe that Fibromyalgia is a nutritional problem. I believe it is a neuro-endocrine disorder. But I digress......
18 tender points and you need 11 of them for a positive diagnosis.
These points are symmetrical; meaning they occur on both sides of the body. They are located on:
- The front lower side of the neck
- Upper chest
- Inner elbow
- Just above the inner part of the knee
- The back of your head
- The top of your shoulders
- The upper back right by the shoulder blades
- Upper buttock
Again, you need 11 and I got 16. They hurt like hell too.
The doctor got the information that she needed for her statement. She was appalled that this disability thing has gone on as long as it has. She knows what will happen and what did happen when I tried to overcome all of this and go back to work. She told me I'd crash out and I did. What do you do? I've asked this before. How in the heck do you re-invent yourself in your mid-50's? No one will admit it but there is age discrimination in sales. So what to do? High pressure and high stress are horrible job partners to have with Fibromyalgia. There were days that I would practically have to crawl in the door. I couldn't go upstairs and when people wanted to spend a lot of time there I wanted to scream. It was impossible to do everything that is required for new home sales.
So I made it through today. She'll put together her diagnosis and letters and send them down to the attorney. The good part is that I really love this doctor. The bad part is the Clinic is going corporate so if you don't take their package you may get shoved out the door. That part sucks. I understand more doctors are going to managed care but this clinic doesn't take insurance to begin with. Their packages start at about 4800 so like I said.........Fibromyalgia isn't cheap. So it remains to be seen if I'll be there very much longer.
So again it's hurry up and wait....