Thursday, October 28, 2010

Rubber bands, paperclips, and staples

Rubber bands, paperclips, and staples
I am in a weird place at this time, I am tired and exhausted and frustrated, and yes I am not the one that actually has the fibro. I have this inside joke with Lynn; we always say we should do a scientific experiment to see if ________ works. Well I think I am doing a life long scientific experiment to see if fibro can rub off on the spouse. I know it sounds corny (or however you spell it). As I have stated in previous posts I do a fair amount of research every week on news and research for the invisible disease and here is what I have decided, I think I am going to send someone a letter in Washington asking them if Fibromyalgia can have its own awareness month. Every time I turn on the TV, I see people talking and raising money for a cure for cancer (as they should it is a horrific disease in its own right) heck every time I fire up the computer the main page this month has some article on cancer, wouldn’t it be great to fire the comp up or turn the TV on and see true information on fibromyalgia? Wouldn’t it be great to have real articles on ways to make the person suffering with this disease better, wouldn’t it be great to have comedy central do a telethon for finding a cure. Instead we search and search for information and if you are lucky after you get past the voodoo doctors selling a cure, and you weed out the guy who just wants to profit from your pain and you are truly lucky you can find one little nugget of information that makes you go hmmm I wonder if this will work to make my wife feel better.

Rubber bandsOk lets be honest here if you’re a man you have done this, if you are a women you may not have but you should try it, take a rubber band and stretch it and then slowly rub your fingernail across it, not hard just apply a bit of pressure, as you do it you see the rubber band slowly start to shred in front of you until there is that remaining last little bit holding it together then snap its broken. I think this is what fibro does to our relationships, let me explain what I mean, it’s the pink elephant in the room it is always there, I want to go to the zoo, so I say hey lets go to the zoo this weekend and I usually get a response of I would love that ( this is where the rubber band is being stretched out), the week passes by and Saturday comes and it’s a bad day so we are staying home (rubber band is slowly being rubbed here) so a few hours later because the pink elephant has reared its head tension has started to creep into every conversation, I am afraid to say anything because I may say something that is wrong (more rubbing) she is tense because she feels bad because once again fibro is dictating what we can and can do (even more rubbing) so by 4pm the awful question is asked what’s for dinner and snap the rubber band is broken and an argument, intellectual disagreement, fussing you name it, it has started and when the conversation is over you look at each other and say what are we arguing over? Why are we arguing over this? Maybe this is a bad analogy but what I seem to have found is that everyday dealing with this disease I see the rubber bands getting stretched, sometimes it’s a quick snap other times it’s a slow rub and it takes a week to snap but it always happens. The hard part is when you stop and realize it isn’t the stupid thing I am upset about it is really that I feel guilty, or hurt or _______ that this disease is actually controlling our day to day lives.

Paper ClipsHere is the problem with paper clips, they hold things together but not nessacarily in the right order, have you ever had a stack of papers and while going through them you move them around and then you have to take care of something so you grab the clip and put it on it? Only to come back 15 minutes, a day or week later and try to figure out how in the world did this get disorganized, where was I in reading this? Well this is the down fall of the paperclip it holds things together but not always in the right order papers can get disheveled, pages get missing, and sometimes when the stack is to big the just pop off.
We do fibromyalgia some days with paperclips, we are battling this today so it goes to the top of the stack, tomorrow we do that so it gets to the top, well lets do this so its on top now, we are arguing with the insurance company trying to get this medication, we are arguing again with insurance for this kind of treatment. Today is this doctor’s appointment, tomorrow it’s a different doctor. Before you know it a week has gone by or a month and all the pages have been moved around and what is supposed to be on the top of the stack which for me is loving and supporting my wife has been spread somewhere else in the pile so if I dig hard enough I may find that page and put it back on top, before you know it you no longer can tell what the proper order is so you try harder to figure it out put them back in order and clip them together, there are so many pages and things to be done that the paperclip just pops off, you cant get it to stay on, this in itself causes us to make a new page a page on how to deal with ourselves when we can no longer keep it together. So what is your paperclip what holds it together for you is it your spouse, is it a friend, what are you relaying on to hold things together for you?

StaplesI love staples here is why, they do the job, they keep things together, you flip to a page but things never get out of order the things that need to be upfront stays up front no matter what it is it will stay in the proper order. I know I am using pages and paper as analogies but what are the pages I mean your spouse, your loved ones, your doctors, your meds, your treatment, your understanding of what the other is dealing with, yard work, special times, and the list goes on. The problem I deal with is that some days instead of using a staple to hold it together I use the paper clip and the rubber band, I lose sight that it isn’t lynns choice some days I lose sight some days that I am supposed to be supportive, I lose track of time that should be spent just enjoying life with my bride, I get consumed with fighting the battle, I get consumed with my selfish desires, I get consumed with frustrations that I cant make my wife better, I get angry that there is no real true help out there for her, well that isn’t true we do have God and each other so there is true help but there doesn’t seem to be relief. I have offered to sell my motorcycle to help pay for treatment, and new meds that the insurance company will not pay for, but in reality that will just make Lynn feel worse. When was the last time you looked at your pages, when was the last time you reorganized what is important, when was the last time you prioritized the pages, when was the last time you honestly sat down and said are my pages in order, are they in the right priority, how do my priorities match up to the needs of the ones I love? I think in the end that is the problem we get so caught up in all the stuff we don’t flip back to the front of the book to remind ourselves and our spouses often enough what that front page says so let me flip it now and read the first page as my parting thought:

Lynn I love you with all that is in me, you are a beautiful, vibrant, sexy, funny, and wonderful women.
I was a blessed man the moment you said you would marry me. I know things are not easy but remember I love you and together we will get thru all of our difficulties.

Tuesday, October 26, 2010

nothing to show for it????

Nothing like going to the doctors office and spending $70.00 and having nothing tp show for it. Well it really wasn't a doctors office. It is a place called Integrative Therapy and it is a place that my new pain doctor recommended I go to. Well, my new pain doctor must think my husband and I have a money tree growing in our back yard. This place does not accept my insurance. My insurance will pay 60% but only after I pay my $3000.00 deductable. My consult/evaluation was $70.00 yesterday. But "normally" they charge $100.00 but because my insurance doesn't cover it they will give me a discount. How nice!!!! They offer massage therapy, acupuncture, bio feedback, physical therapy and much more....I really would love to do it but........they want me to come 2 times a week for 2 months and that equals $1120.00. Now that doesn't include any tests. Then I would go once a week the next month. O I forgot to say this is a 3 month program....they specialize in fibro.
I forgot they have a nutrition program too.

My question is....why does everything with fibro have to be so freakin expensive????? My poor husband, I feel like every time we are turning around it is to spend money on my fibro.

I went to a new doctor 2 weeks ago....I am still not sure about him?????
It is very hard to get ahold of them to ask a question. He put me on a new muscle relaxer and it seems to be helping a bit only 1 really big problem and 1 smaller problem. It makes my mouth as dry as the Sahara desert and a rash on my neck. What really sucks here is that my lovely insurance company had their say in my meds. My doctor prescribed a different med first for me, which I really really liked. It was 1 pill that worked 24 hours!!! But because it was expensive and did not come with a generic they would not pay for it. They would however pay for the one I am on now that is working just ok and gives me major cotton mouth. It is also 3 pills a day, just what I wanted....MORE PILLS!!! I cannot continue taking this one....;(

By the way after my eating binge last week I am happy to say.....I am back on track. As of this morning I am 7 pounds away from what I weighed when I started dating Jim.

Thursday, October 21, 2010

Driving Home

I wrote this last Thursday but forgot to post it, so here it is....

Well I drove home from the beach today by myself and it was a looong trip home!!! I think and I feel like I gained 10 pounds because all I did was eat to stay awake. I ate grapes, circus peanuts, boiled peanuts and pretzels and a mini Dairy Queen Blizzard!!! (it was only a 4 hour drive) I even drank 1/4 of a cherry pepsi and I NEVER drink soda!! I did drink 2 bottles of water though. Now keep in mind I also have pms!!!
OK so now I have grossed you out with what I ate on my drive home let me really gross you out with what I ate on Tuesday and part of Wednesday...a ton of candy and 3/4 of a cream cheese cheese cake!!! Yes, I said...3/4 of a cream cheese cheese cake!!

Don't really know why I posted this but I did...:)

Tuesday, October 12, 2010

Understanding the scarecrow

I sooo understand how the scarecrow felt in the movie The Wizard Of Oz, if I only had a brain!!!! My memory is getting so bad, it is really beginning to scare me. I am doubting so many things these days. I write everything down. My to do lists are becoming longer just so I can remember the simple things I need to do. I cannot spell some of the most basic words. (thank goodness for spellcheck and Jim) I know I have spoken before about my memory and how it seems to be slipping away it is just that lately it is effecting my everyday life more and more. Jim will say we talked about something and I will swear we didn't and then I will get angry because I don't want to admit to myself that we "might" have discussed it already. See, I still don't want to admit it....hahaha!
My friends have to be thinking I am crazy or just "stupid" or "boring".
I know that Jim gets so frustrated with me and I hate that....I understand why he does but I don't have to like it. He is such a patient man but he has his limits and I know I push them!!! I really don't mean to and I HATE IT!!
I get soooo scared when I can't reach back into my memory and no matter how hard I try, I can't seem to find or remember something. It is almost like I want to tear my insides out and just SCREAM!!!!! LET ME OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This past Friday I almost threw my hair brush across the room and just yelled at the top of my lungs....I could just feel the rage inside me and it was all because I felt "stupid"!!!! THIS IS JUST ONE MORE THING THAT FIBRO IS TAKING FROM ME! I am trying so hard to fight against this, I am doing what I can to excercise and feel "healthy" but the fibro keeps taking things from me. I have lost most of the weight I wanted hoping that would make me all better...not!!

I mean for goodness sake for 15 years I was in charge of over 15 stores, 86 plus employees, sales volume of over 15 million dollars, I drove all over SC, NC, TENN and GA and part of VA (without a GPS) trained new District managers, was a trainer and now I can't even remember what I wrote in the sentence before this one.

I have thought about about trying to get a part time job for the holidays but am so freaking scared of being fired!!! I honestly don't think I could remember the most basic thing!!! I mean there are days I can be so confident and sound so sure of myself but ask me things and forget it!!! I thought I could be a gift wrapper, that should be pretty easy right???? I am afraid to try that but then that is mostly volunteer and I want to make some extra money...

It is like there is something in my brain that stops things from coming gets to a certain point then hits a brick wall and BAM!!!!! It actually hurts in a way.....makes my jaw hurt from trying to remember.

Fibromyalgia isn't just a bunch of pain. It is so much more that people don't know about. I see the commercials on tv and they make it look like it is so easy to fix. Yes, I know I have blogged about the commercials before too but I don't think I have said this before. On the commercials all they talk about is the pain, and they make that look like minor pain, but they fail to mention the EXTREME FATIGUE, SEVERE IBS, IC, FIBRO FOG, MYSTERY PAINS, clumsiness, weakness in my hands, eye sight problems, mouth pain, teeth problems.....I think I got everything but I am sure I have "forgotten" something.
That is a list of most of my symptoms.....Maybe I could do a TV commercial????

Tomorrow I am going to my first appointment with a Pain Clinic. I am looks like a pretty serious place!!

Everyone has been saying how good I look lately. I wish they could see me right now, they would be surprised. I look like something the cat dragged in. I am sitting here typing this with my eyes 1/2 closed trying so hard not to fall asleep. My stomach is so bloated I look like I swallowed a beach ball and it feels like it too!!! I need to go take a shower but don't know if I have the energy to climb the stairs plus my hips are freaking killing me. My right hip is so sensitive to the touch right now, if I put the slightest pressure on it I want to scream. Even if I am not touching it, it is hurting. It was hard getting comfortable last night in bed....I am lost when Jim is not in bed with me. I use him as part of my pillows. What I mean is, his arm fits just perfect around me with a pillow and I can snuggle up to him in the perfect position. Only problem is, when he wants to move....I didn't say it was a perfect thing :(
Speaking of going to sleep, I am going to crawl my way up the stairs and do just that! O'yea and we need a smaller house!!!! Anyone want to buy our house???

Monday, October 11, 2010

If I only had a brain

This song keeps going thru my head.....

Wednesday, October 6, 2010


What was supposed to be a romantic get a way for me and Jim is turning into an anxious romantic get away weekend.
Let me back up here......Jim and I have been talking for quite some time about going motorcycle camping. Sleeping under the stars, holding each other and just relaxing. Riding and looking at the leaves turning colors, hiking thru the woods and "exploring" nature. I emphasize that it was going to be just me and Jim!!! Now it is the whole MAVERICK group going. Which I am 100% ok with everyone going it just changes my anxious level to 100%. When it is just me and Jim, I don't worry about my hurting or being tired, he understands, loves me, is patient and I am relaxed.
(I am not saying that my friends don't love me)
I am just worried that if I wake up and can't move, will I put a damper on everyone'e mood? Will they understand? This is going to be the first ride that Jim and I have taken together in over a year and I don't want to hold everyone up by stopping along the way due to my pain.
I am trying not to stress over this to much as I don't want to bring on a flare....

The weather the past few days has been wonderful and my body has been enjoying it so much. I really want this winter to be better than the last one. I am trying to do everything I can to feel fit. I finally lost 2 more pounds!!! Yea....I am going to Tai Chi today. It is going to take every once of energy I have to get up to go there but I am going to do it!!! My pain level this week has been up and down but not above a 6, which for me is AWESOME!! My energy level has been ok, just ok. I have been having some spurts of complete energy drain. Where I will be doing just whatever and all of a sudden my whole body goes into limp mode....kinda like right now. My arms feel like they weigh a ton. I have been having what I call fibro pains too. What I mean is pain that there is NO reason for me to be having. My right wrist for about 2 weeks was in major pain and the only thing that helped was a wrap that I kept on tight. The pressure took away the pain. Then Sunday my right upper arm started hurting it was kinda like a muscle hurt and a weakness at the same time. Then yesterday it traveled down to my lower arm and it was more like a bone pain. For awhile I felt like I couldn't hold onto anything, like I had no strength. Weird, huh?? As I said, I just call it Fibro Pain!!!! No rime, no reason!!!!

O'well gotta go to the Y......I can do this!!! I HAVE TO DO THIS!!!!!!!!!!!!!!

Monday, October 4, 2010

Last week I was watching the weather report and saw that rain was coming and not just a few sprinkles but some serious rain!!! I automatically started to worry about what it meant for me and my pain/energy level! I know that people are affected all the time by the weather, heck some people can even predict the weather....:)by the way their body feels!!!
For me when it rains, I feel like crap to be honest!! My heart goes out to my fibro friends that live in England. Damp, rainy weather all the time...I would be soooo depressed! I woke up this morning about 5:30 (after going to sleep about 1:30) to some really bad hip pain!! I mean the kind that makes me want to scream out load when I barely move, let alone role over on it. I got up, took my pain meds and luckily fell back to sleep. I remember Jim leaving for work about 7:40ish and that my body felt like it had been hit by a Mack truck!!! Let's just say that I didn't get really awake until 9:30ish. If my house had caught on fire I am sure I would have burnt up in it. That is how bad it was!!!!!!!!!!!!!! Even when I woke up about 9:30 it took me about another hour to be able to get out of bed. I am SO SICK AND TIRED OF LAYING IN BED WAITING TO BE ABLE TO START MY DAY!!!! I lose so many hours of my day that I want back!!! I have said a thousand times I hate mornings!!!!

My body hurts so bad in the morning!! Body aches, still tired, hip killing me, burning, every nerve in my body on fire!!! So please don't be upset if you ever call me and I don't answer the phone and say "GOOD MORNING"!!!!

I was supposed to drive to the beach this morning but that got put on hold because my body said....NOT!! So I am going down tomorrow :) I can’t wait to see my baby girl and my parents. I love my family!!! My daughter is the light of my life. My parents are the best…..I love them more than they will ever know!! Originally my friend Michelle was going down with me and this was going to be a last beach trip for the summer but then the rain came to the beach as well and well, it’s not much fun to lay out in the rain.
I used to be sooo afraid to drive by myself to the beach! Well, if truth be told I still get nervous but I PLAN better now. If I get tired, I pull over and take a break. When I start to hurt too badly, I pull over and walk around. I am also going to be wearing a heated back thingy. If I don’t think I can drive then I just don’t do it. I have cancelled trips before. The most important thing is….I HAVE CONFIDENCE IN MYSELF AND MY ABILITY TO DRIVE TO THE BEACH!!

The great part of my day is that Jim and I went to the Y together again tonight! Jim was not able to go at lunch and I was afraid we wouldn’t go but he kept his commitment to me and himself!!! I really want to lose 10 more pounds and more importantly I want to be as active as possible. I am so afraid of winter!!! Last winter was such a dark time in my life……my body does not do well with cold or the rain!! I am really nervous......

I made my trip to the beach and had a great time!! I was able to relax and take it easy so even though the weather caused me pain and to be very tired, it was o.k..
A total of 12 inches of rain at my parents house....WOW!!!