Thursday, December 30, 2010

Who am I?

I need to say that this post started off in one direction and then I kinda changed my mind and went another way....read and you will see what I mean..haha

Am I the only person with fibro/cfs and ALL the other crap that goes with it to loose their identity??? For the past couple of months I have really been fighting a silent battle within myself and I seem to be loosing!!!!
On a daily basis I seem to be loosing a little bit of myself........
People don't see this, people don't know this. Unless you have fibro and live daily with the pain and the fatigue and the never ending fight just to get thru the day. Everyday it takes everything I have just to get thru it, some days I can do more than others. I wake up and lay in bed wondering what I will accomplish...
On a good day I drink my energy drink and I make it thru the afternoon...I will be in pain but at least I get a small boost to do some things for a couple hours. But then again that doesn't always work.

My friend Rosemary has a blog and in her most recent post she mentions living in isolation. I soooo understand that and how it could be easy to do! There are many days, more than I care to count where I would rather just be by myself! It is easier to deal with the pain that way! After so many years of talking about about it, complaining about it and just dealing with the pain it becomes easier to deal with it by myself. People get tired of hearing about it!!!!! I get tired of talking about it! I get tired of dealing with it!!! So many days when I am in pain I will just lay on the bed and mindlessly look at my computer. ( what would I do without my laptop? I think I would go insane) When I am hurting not having to talk or think helps a little. I know that probably doesn't make sense to most people but to those of us that suffer with fibro/cfs it makes perfect sense!!

My friend Rosemary also mentioned your body betraying you and how do you deal with that? I am still trying to figure that one out.....I have mentioned so many times my husband Jim and how wonderful he is, he is the BEST! This is one of the toughest parts about fibro, actually EVERYTHING sucks about fibro!! Jim and I are really trying to work thru the body betraying you part.....I want to be like my old self and Jim wants me to be like my old self too!!! I can't begin to guess how many marriages have ended because the spouse has fibro?? It changes you, you become someone you don't want to be!!! I find myself snapping at Jim for the slightest thing. I find myself being selfish with my feeling "good" time. What I mean by that is....I am of course a type A personality (that didn't change just because I have fibro)and when I am feeling good I try to do what I can around the house or in the yard. Hence, Jim loses out on quality time with me....I wish I was rich and could afford a maid and yard person..haha
When Jim and I got married I could do it all....I know, I know you don't have to tell me...pick and choose what I want to do! I can clean later! The yard will be there later!
I am not as bad as I make it out to be,,,I do let things go....I spend a good bit of my day laying around looking at what all I wish I could do!
MY PERSONALITY JUST SEEMS TO HAVE BECOME BLAH!!! I MEAN, I AM TYPING THIS AND I JUST FEEL BLAH....IS IT POSSIBLE TO NOT FEEL AT ALL??? TO NOT HAVE ANY EMOTIONS AT ALL? I FEEL LIKE AN ALIEN HAS COME DOWN N THE MIDDLE OF THE NIGHT, SUCKED OUT THE PART OF MY BRAIN THAT ALLOWS ME TO HAVE ANY EMOTIONS.

Depression, that is another area that I fight with on a daily basis! It is something else that people don't see...I try not to let them know, kind of like my dirty little secret. I will NOT take any little pill for this. Not that there is anything wrong with it....if it works for some people then that is great. Many millions of years ago I tried several different kinds of pills for depression and the side effects were soooo not worth it for me. ( i know they have changed alot since then)just not my cup of tea!
I really do struggle silently every day with so much! It wears me down in sooo many ways!!! I was diagnosed just over 4 years ago and cannot imagine what my life will be like 4 years from now. I hope and pray every day that they find a cure!!
When I met and fell in love with Jim, (which by the way happened at about the exact same time)I never imagined our lives would be like this. GOD DID THOUGH!! I know that God has his master plan and am putting all my faith in him...he knows what he is doing! I keep telling myself that!!!!!!!!!

Wednesday, December 29, 2010

I made it!!!!





Well I made it thru Christmas and having a house full of family...I don't have a small house but I do have a very small kitchen and a small living room. So having 8 adults all at one time.....whew!!!! I would not have wanted it any other way though...:)
My dad knew that my oldest brother and his wife were coming but my mom didn't so the surprise was wonderful. We went to Christmas Eve service and it didn't look like Steve and Claire were going to be able to make it here in time but they did!! (they drove in from Tenn) I was sooo happy to have most of my family at church with me. Next year, my daughter will be up for Christmas and that will make it perfect. This year she spent Christmas day with her boyfriend. I was kinda bummed but I also remember what is like to be young and in love....(this is my daughter's first long term relationship)
Another really great part is that my stepson, Kyle came over and spent a good bit of time with us.....he is really growing into such a young man! After church service my mother in law Sue, my father in law Mike, Jim's sister Kris, my brother in law Kent, and my nephew James came over as well. OK, now talk about a house full of people but I LOVED IT!!!
I know you are wondering, did I rest any? Did I take it easy? Did I relax? Well I kinda sorta maybe did!!! Let's just say, I think I was the perfect little hostess. There was plenty of food, hot fresh coffee, and I kept my house picked up.
To top it all off.....WE HAD A WHITE CHRISTMAS!!!!! IT SNOWED CHRISTMAS EVE AND CHRISTMAS DAY....we got about 9 inches...
My sister in law has fibromyalgia so she of course kept worrying about me and telling me to sit down and relax...hahaha, that wasn't going to happen! I was going to go as long as my body would let me. I knew that I would pay for it later but I was going to enjoy it while I could and I did!!!
I was very lucky while everyone was here the only really bad pain I had was my legs and feet. My right hip is still giving me a fit, going to talk to my doctor about it on my next visit. My stomach feels like I swallowed a bag of rocks. I look as though I gained 10 and my IBS is in full swing. Of course all the sugar cookies I ate might have something to do with that...180 calories per cookie!! Can you believe that?? It has icing and sprinkles on it..major yummy!! I have eaten 4 boxes..180 x 48 = 8640 calories!!!!!!! Can we say O MY GOODNESS!!!!!!!!!!!!!!
Sugar is so the 1 thing my body does not need, the 1 thing that makes my body go hay wire!
Can we say...back to the gym for me!!! My goal was to be in the 120's by the end of 2010 and unless I can lose 2.5 pounds in 2 days that's not going to happen! I mean I could lose 2.5 pounds quickly but doing it the wrong way just means it will come right back and when I lose it.....I never want to see it again..hahaha
During my last doctors visit we discussed changing my pain meds after the holidays. To be honest I am somewhat nervous about changing. I mean I know that one of the pain meds I take does not help me with my IBS so getting off of that one will be nice, if it helps. Just going thru some of the withdrawals will not be fun..:(

Right now I have the house all to myself so I am going to lay here and catch a few minutes of shut eye..

O'yea and the pictures are:
1. My house....the pictures was taken last year but it pretty much looks like this now with all the snow..EXCEPT MY BEAUTIFUL TREE IN THE FRONT YARD FELL OVER THIS WEEKEND....(i am hoping to save it)
2. my dad and his friend Dutch...well he is my friend too! my dad is on the right.
3. my mom and Dutch's wife Marga...my mom is on the left
4. me and my brother steve and his wife claire.....i am still in my pj's :)

Monday, December 20, 2010

Getting Excited

I swear the years are going by faster every year!!! Just yesterday I was laying out at the beach and spending time with my friends from Holland. Just yesterday I was eating dinner with my daughter celebrating her 19th birthday. Now it is 4 days before Christmas and I swear time really does fly!!!!!!!
I always say I am going to be done with my shopping a month before Christmas but have yet to accomplish that goal but you know what? I am not going to stress over it!!!! STRESS IS THE ONE THING I AM TRYING HARD NOT TO DO!!!
So I ask myself why am I doing more this year for the holidays than I have done in many years? I want to be around family that is why!!! Last year and this past year have been a very tense year for me and my family. My mom was very sick and closer to going to see God then I ever wanted her to be. She went into the hospital to have hip replacement surgery and ended up being in there for almost 2 months, I think? I can't remember how long it was now I just now it seemed to feel like an eternity!!!
My mother had a very hard road to battle but she did and she won!!!! My father, well let me just say that I love and adore my father and I don't ever want to have to go thru that again with him.
My husband was my rock and I could not have gotten thru it without it!!
My brother Steve came home for a day and night and to watch his face when he saw his mother in the hospital bed about broke my heart. I love my brother......
Then a couple weeks later Steve came back with his wife Claire and that visit just made my heart swell with JOY!!!! First having all of the family together for the first time in a million years, that in it's self speaks volumes!!
Then there was a moment in the day where Claire and I met this older lady coming into the hospital and we have a brief but life touching conversation. This sweet lady was a widow and told us about how she used to be a nurse and some other short stories. Well, Claire used to be a nurse and to hear the 2 of them talking just made my heart smile!!!! Then we parted ways and went to visit my mom. While in the room, Claire started to wash my moms feet and rub them with lotion. Anyone that knows my mom knows that her feet are very sensitive that she has alot of circulation problems so touching my moms feet is a huge thing. I just sat that and watched Claire with total AWE and LOVE!!! I don't think I have ever told her this. (so Claire, you know know!!!) I actually blogged about it right after it happened because it touched me so much. We were all sitting around talking and here Claire is, being the "nurse" caring and loving on my mom!!!! That meant more to me that she will ever really know!!!
So, since I have to end this post now (really have to get in the shower) I am having my family for Christmas and not stressing (well not to much) because I love my family and want to be around them!!! last Christmas was to me a TOTAL disaster and this one will be one full of GREAT and HAPPY memories.

Monday, December 13, 2010

What friends are for....


Well,I said that Saturday was a great day, my whole weekend was even better!!! Sunday was of course a little sad because after church Karen and William left to go home but I have some wonderful memories to cherish!! Usually after a busy weekend, (which it really wasn't a busy weekend now that I think about it)it was a very calm, fun, relaxing weekend. We went to dinner Friday night downtown then came home and just talked in our pj's. (me and Karen were in our pj's) Saturday morning, Karen and I went to a cookie exchange / craft thingy that our church ladies were doing. I was sooooooo afraid I would not be able to be able to go because we all know how I don't do morning well at all!! Guess what, I did great!!! God was answering my prayers this weekend :)
I had taken Karen to Fresh Market the night before because I had to get cookies (yes, I know I am supposed to bake my cookies for the exchange) Anyway, we stopped by there again on our way home to get some more goodies for supper and some goodies to munch on and who did we run into but our handsome husbands..:) They decided to tag along with us so we went to lunch.
After lunch we went to get our UGLY, SHORT CHRISTMAS TREE...YES, you read right!!!! For the past couple years Jim and I have made it a point to pick out the ugly tree that no one wants, It is so funny to watch when we go because as soon as we ask them for the ugliest tree they ALWAYS know where it is. They always have it put to the side, poor tree!!!! I THINK OUR TREE IS BEAUTIFUL!!!!
After we got home I had to go lay down for about an hour. I was starting to feel run down and didn't want to make it worse. I was going to make deer chili when I woke up......well my wonderful husband made it while I was sleeping!!!! It tasted delicious too, I have eaten a couple of bowls so far...:)
We decorated the tree and I actually had a glass of pomegranate wine, it was really good too!!!

Not only did Jim cook the chili that day but he also surprised me by fixing the Christmas lights on the front porch, (I love the way they look!!!!) put the mulch down for me. I still need about 20 more bags but it's a start... He even fixed the spot lights on his jeep. Of course by fixing them it takes that off his Christmas list..haha Now I am back to the drawing board for some other things to get him.

I am kinda tired today. Having a hard time getting started but over all it's not that bad considering.....but then again I would do it all over again because I loved seeing my friend Karen.

Sunday, December 12, 2010

Great day!

Today has been a fantastic day! A day were everything has gone right and just been a really really good day.....One of my bestest friends in the whole world came up from Charleston SC to see me (with her hubby, William). Well, actually they came up yesterday if I am too be 100% accurate..:)
Anyway, all week long I have been worried about having a flare or just being in a lot of pain when they got here. I had been trying to get the room ready that they are staying in and trust me that took some work but I am soooo pleased with the way it looks. Normally I could have had the room done in a day and a half this time it took me 4 days because I refused to let it tire me out.
It has just been a great day!!!!

Monday, December 6, 2010

Just a little humor to lighten the day



A note from Gizzy

Hello everyone I am Lynn’s cat, she named me Gizzy about 7 years ago when she found me in the rain sitting on her porch and she and Alexx took me in. She is married to a guy name Jim who is a Dog lover but I am breaking him down, he now allows me to sleep on him when he is laying on the coach but that is our secret.
I am sure by now you are wondering why I am writing a post. The reason is I have some major complaints and I want someone to fix it, and fix her. Lynn may rule the roost but I am the queen of the castle and some things have been bothering me the last few days. Lynn has been laying around not feeling good. I get up in the morning and go check my bowl and there is no tuna there so I pounce up the stairs looking to see where she is and what do I find, she is hiding under the blankets. I will fix this I jump up on the bed give a big head butt and she will get moving. To my surprise she just looks at me, what no hello, no I know I know I am coming she just lays there looking at me, I know she knows I need my tuna. I will rub against her and this will get her going, she slowly reaches for me and mumbles something before she closes her eyes again and just lays there rubbing me with a few fingers. Then she stops and I see tears and she is telling me she hurts but she will beat this, she is getting up and is going to come feed me. Wait Wait Wait what is this she hasn’t moved she is just staring into space. I know I shall pounce on her chest, nope that didn’t work either so I will lay on it until she says uncle and gets up. Well I laid there for 45 minutes and she didn’t move so I will go see if food has magically appeared and guess what it hasn’t.
Well it has been 2 days and going on 3 days of this stuff she calls Fibro, what does a cat have to do to get some relief here? What do people really think when they look at Lynn when she is like this? I mean well never mind when she is like this only me and Jim get to see her. Ok it has been 3 days and Jim fed me when he got home today but he doesn’t feed me like she does she makes funny little noises and talks to me like I am a little kid, Well me and Lynn had to have a heart to heart today, I played the physcologist and just laid there listening to her, I gave her the soft purr of encouragement so she would continue telling me how her feet have been staying numb and she is having issues with feelings in her arms. She doesn’t seem to be how she normally is so I think I shall have a conversation with Jim about her and see if he can help…. OHHHH well that didn’t go well I purred and purred, and even raised my voice and meowed at him and he just looked at me like I was crazy, I am not crazy I am the queen of this castle and I will be heard, so I meander myself back up the stairs,,ahh Lynn has her computer on, so she is alive I will go talk to her about this I bounce up on the bed and she is asleep with her hand on the keyboard, she has typed this word I have no clue what it is can someone help me and explain what this word is “ ssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss” ? She always seems to type words like that when she is in pain and is sleeping while on her computer but sometimes it is different letter then that. Well I hear Jim down stairs he is rummaging through the cabinets; he must be looking for food, so I will go see if I can get some treats from him. So I will leave you with some parting thoughts from a cats perspective, Fibro is real come stay for awhile in our house and you may be lucky enough to see the effects it has not only on Lynn, but on Jim and family, and me. Why does it seem we are no closer to a cure? I want to tank all of you for letting me share my life on here.

After thought:
No animals where harmed or malnourished in the writing of this letter, I took liberties with the no food because I don’t like Jim feeding me; it isn’t as much fun as when Lynn feeds me. And I do get fed 2 times a day, and I would probably be ok if I did go a few days with out a meal as my doctor tells me I am a little on the heavy side.

Monday, November 29, 2010

the face of fibromyalgia




I cannot believe I am posting these pictures of me but this is what I look like when I have been hurting all day....not very nice is it??? Yes, I am smiling in one of the pictures because I don't like looking so mean/mad!
Not the picture of me with my husband of course, just wanted you to see the difference....

That time of year - when you find out who your true friends are!




Today and last night have been the worst pain day for me in probably over a year. I mean I have had some major pain days but it would peak and then would go down to a somewhat manageable level for the most part.I wake up and it takes me a couple hours to be able to get going and some days I go faster than others but I am able to go. I usually have a mid afternoon slowdown but for the most part my pain level will peak and then level....again some days it will peak longer than others but not for over 24hours! That is what I am dealing with now!!
My pain started when we left the beach yesterday to head home....by the way, really enjoyed spending time with my parents and daughter. My nephew Eddie is all boy!!! I love it when he comes into my room in the morning and looks at me with a sweet smile and says cartoons. Of course I put them on and then he snuggles in bed with me.....little does he know that I love it because I get to lay there and snuggle with him.....nothing like that first thing in the morning snuggle!!!

Anyway I ended up going to bed about 10ish and have not gotten off the bed since then. Well I have gotten up 2 times. 1 time for something small to eat and 1 time to get some water. I just realized though that I have not peed all day and it is now 5;14 in the evening....my IC is loving me right about now!!! That could explain why my bladder feels like it is on fire and my lower back is ready to break...this past weekend, I actually drank cherri pepsi. I NEVER drink soda!!!! What the frig is going on with that????
Last night my sleep was terrible! I kept thrashing about,,,I kept waiting for Jim to roll over and tell me to STOP IT....I felt so bad but I hurt so bad I just wanted to scream!!!! When I finally fell asleep I think I got about 2 hours of sleep and have been awake ever since.
Jim just said, "well at least our bed is comfortable" and I told him not if you are laying in it ALL day! I have zero energy....my legs just don't want to work and feel like they weigh a ton when I walk....forget the stairs.
I just don't know if I can handle another winter like last year! I am a happy person and last winter almost put me into a deep depression....

One of the best parts of me blogging has been the friends that I have made and that some of my local friends have been able to read about what I really go thru.

I think that having the pain is beyond awful! The tiredness that you feel is overwhelming but the loneliness that you feel is by far the worst of them all!!!!! People/friends don't want to be bothered by your pain...they just go on with their lives and when you can get back into it well ok then. It also amazes me how different my friends can be....for instance I have 1 very dear friend who I think the absolute world of and she suffers with alot of pain problems and we talk often, well this morning I called to wish her a happy birthday and she was more concerned about me and what she could do for me. I quickly changed the subject because it is her birthday and I want her to celebrate it and be happy but the fact that she really truly cares and shows it with her love. Then I have another very dear friend who I was speaking to and I mentioned that I was still in bed and it was past 4:00 and not once did she say I hope you feel better, whats wrong, anything I can do to help you.....I often wonder how people can be so different? Where is the compassion? Then I have the friend that acts like she cares only when other people are around!! This friend doesn't even begin to try and really understand what I go thru....So yes, I feel very isolated some days!
Don't get me wrong, if any of you have read my husbands post then you know I am truly blessed with a loving and supportive husband who I love with ALL my heart. But he works during the day and I cannot expect him to talk to me every 5 minutes.....
Lord, I pray that this goes away and is not something that stays all winter long...I REALLY DON'T THINK I CAN DO ANOTHER WINTER LIKE LAST YEAR...

Hey, I know what I will do....I WILL GET A TANNING BED LIKE MY SISTER IN-LAW and put it in our up stairs multi room :) at least I could get some warmth and sun that way...

The pictures that I posted are from Thanksgiving weekend,,,,and as soon as I find my camera I am going to take a picture of how I look now, yes, I said how I look now and post that picture too. Then you can see what fibromyalgia can really look like.

Tuesday, November 23, 2010

Letting go

Last week started out to be pretty bad. I mean not just pain level wise but with just plain old stress. Hum, but then again my pain level is based alot on my stress level and of course the weather. Anyway, I was really unsure of how my thanksgiving was going to go and I can honestly say it was better than I thought.
Other than having a shadow that I really didn't want...all was good.
My mother is an awesome cook and I so love eating her food especially her stuffing....which I think I ate 6 cups of....:)and at least a whole fruit pie!!! Can we say YMCA!!!!

Well I feel it, do you? CHRISTMAS????? It's coming and I am ready for it this year :) Last year was a really, really bad year and I honestly didn't know how I would make it through but by the grace of God and with my loving husbands help, I DID!!!! So this year I really want to enjoy Christmas....I want to decorate the house and actually bake something! That part is scary I know...hahaha
Don't have alot of money for presents but can still do alot of kissing under the mistletoe...:) watch out baby! I want to play Christmas music while I am cleaning and in my car...I might even sing along. I know another scary thought...:)

Well we are back from my parents house and I can honestly say I am in a full flare!!! My legs/feet are off the charts and the rest of my body I can honestly say feels like I have the flu. I just want to lay here and do nothing and the only with that is....wait, there is no problem with that! I can just lay here and that's what I am going to do!!!

Monday, November 15, 2010

Feeling overwhelmed

Yesterday afternoon was a pretty bad one for me...I had moments where I just wanted to scream, throw things and just get in my car and drive. Instead I just cried my eyes out while I raked leaves and talked to God.
I am feeling so overwhelmed and it is because of my yard!!! People will tell me not to worry about it, that just makes me want to yell at them!! I have ALWAYS loved to do yard work. Anyone that knows me and knows me well knows that yard work is one of my favorite things to do. It is great for my stress. I need to explain what I mean by yard work though....puttering around with my flowers, weeding, just your everyday upkeep and maybe some changes to landscape now and then. Well my yard has gone to crap and back and I just can't seem to get anywhere with it, I have always loved a nice yard. It is just one of those things that calms me...I can't explain it....maybe it comes from sitting on the front porch and watching Alexx play as a little girl, I don't know I just love a pretty yard. It is not for my neighbor sake. (though I am sure they would appreciate it)
I have tried so hard to get grass to grow in our yard, front and back. Many hours of pain and still no grass...we have dirt with lots of grass seed just laying there!!
My neighbors have walked by while I was on my hands and knees and made comments like, it's going to be beautiful when your done or wow, you are working away there aren't you?? The part that makes me cry while I am typing this is that I have put so many hours of pain into this and to have nothing to show for it!!!!
I don't like to use my precious good hours and have nothing to show for it!!!
I am fighting a losing battle here but I can't give up and I can't see an end in sight. Today I have to go outside and rake up leaves and clean off our patio before it rains and cover the wood pile.
Please don't say that I should let it go, that with fibro you have to pick and choose what you do. I understand all that.....I would just like to have a nice looking yard...I would just like to have some grass!!! The sad part is, we used to have grass in alot of the areas that are bare, I am not sure what has happened??? We have more weeds than grass, we have brown spots where we did have grass.
We have this area we call the hill...it has got some trees that have got to be cut down!!! Alot of dead branches that I will be getting rid of this week. I am not sure how I will be doing that but I will do it!!!!
Not to mention that my hosta has just about all died! I have a flower bed beside the deck that used to be full and lush and now is just about bare...everything died?????
I had beautiful, full, lush, hosta plants on the side of my house and they all have died!! I did have beautiful plants on the top of my hill and they are all now dead....:(
I just want to cry,,,hey I have done that and it didn't help!!!
And if that is not enough I have other things I want to get done.....but as long as the yard is hanging over me......I just feel so overwhelmed...:(

Thursday, November 11, 2010

Just a Post

Today is one of those days that I don't like myself. I don't like what this disease has done to my personality....dealing with the pain day in and day out. Holding it in and not showing the pain Everyone says to be positive, show your sunny side....don't talk negative. People get tired of hearing about the negative. You will have a better day if you have a positive outlook on life....
How can I be positive when I am always letting the one I love down? The pain makes me want to isolate myself somedays and trying to explain that to someone you love is very hard. Not being able to show affection some days because you hurt and have become so numb to everything is not fair to my husband. He doesn't understand and no matter how many times I try and explain it doesn't help him. All he feels is the hurt and nothing can get past that.....

There are times I wish I could just go live the rest of my life by myself then I wouldn't have to risk hurting anyone!! Having fibro is not something I chose to have! I am trying the best I can to live as "normal" a life as I can with it. It is the hardest thing I have ever had to do.....it tires me out mores than anyone will ever know. Just to smile sometimes when I really don't want to or when my stomach is in such pain that I want to just roll over an die but I can't so I just smile. Doing that day in and day out really tires you out!!! Physically and mentally.....
In doing all that I don't give the one person the one thing he needs and wants and....I just want to scream because of it!!! It is the one thing I want to give of myself and fibro robs me of everything that I am just trying to survive the day!!!!

This past week has been a hard week for me.....getting started has been taking me longer than I like and that has got to stop!!!! I would much rather be busy in the mornings and go to bed at a "normal" time. I have been falling asleep around 1:00 am lately. I do not like that!!!!!!
Last night when I fell asleep I felt as though I was on a bed acid trip for a few minutes. It really scared me for a bit....
Went to my new pain doctor yesterday ( 2nd visit) and I am starting to like him. He had more of a personality. Really took the time to listen to me...we talked about my right wrist, my back and getting some injections.....yea!! He gave me a prescription to try for IBS, I am kinda nervous about trying it since I googled it and the first thing that popped up was about a court case...
I really think I am going to like him.....
Off to the Y.....

Monday, November 8, 2010

Leaves ( from Jim )

Hunting Season

Ok I know a few of you may be totally against hunting thing, but please bear with me (no pun intended).

I really enjoy this time of year for a few reasons, one is its hunting season and it’s also the most time I get to spend away from my normal life all year long. I get to sit in the woods and see nature at its best and worst. I was in the woods this morning doing what I normally do which is pray for a deer to come my way, well that lasted about 2 minutes until my mind went to my wife and all that she suffers though with this horrific disease. And as I watch the woods come to life this morning I saw something that I have never truly noticed, well maybe I had but not in this way. We live in the city and we see fall come and go and we see the leaves on the ground and see the chore that it is to keep them clean. But here is my question, have you ever heard a leaf fall, you know just a single leaf falling from 30ft up in the air to the ground? Do they make a noise? Most would say no it is just a leaf it is light and it floats to the ground softly landing. Well it doesn’t it is like fibromyalgia is in my wife’s body it is loud it hits things on the way down causing more and more noise a leaf falling will make so much noise you would think an animal was heading your way. Walk on leaves and you will hear them crackle during the day time but walk on them at night or the wee hours of the morning and it will sound like fireworks going off.

So back to my thoughts this morning, I wonder if normal people actually understand that the nerves in the fibro person are so intense and the pain is loud that its like having leaves falling and then being trampled on, constantly making noise for the brain to try to interpret and being trampled on each time a muscle is moved. Are the medications really doing anything to help other then acting like water on the fallen leaves, making them slippery? They are still there and when the water evaporates the leaves go back to crackling and the pain returns. Us normal people seem to be lucky as when the leaves fall we still have a clear path to walk on and the ability to not hear the leaves hitting the ground. I prayed for my wife today when I was in the woods and a gust of wind came up and it was raining leaves making so much noise an elephant could have snuck up on me, I prayed that maybe today the leaves would fall a little softer, and I prayed that for at least a day let no one trample on the ones that have fallen and that there would be a clear path to travel on for todays journey, and to all of Lynns fibro friends I say that prayer for you also………

The power of positive thinking!!!!

Just thought I would post some pictures that make me smile....the first one is of my hubby doing yard work. This makes me smile because he really doesn't like yard work but does it because he LOVES ME SOOOOO MUCH!!!! :)

The 2nd picture is of my stepson the day we got married, fooling around with some bows he wanted to put on the car.

The 3rd pictur is of my daughter and Jim. This one makes me smile because Alexx REALLY LOVES her step dad!!

The 4th picture is of me and my friends enjoying some vino...one of them is what I call my bestest buddy

5th picture makes me smile because my daughter is happy and smiling!!

Last picture I am just happy that my husband supports me wanting to do a 5k. I am not able to run them like I used to but on an ok/good day I can walk it. On a really good day I can even jog for a min now and then. My husband is my biggest supporter and without him I couldn't do it!!!







Thursday, November 4, 2010

looks can be decieving

So much for going to bed early.......but today is another day and I am going to try again! By the way it was 1:20 when I finally went to bed.
I am laying here listening to my cat and his breathing is really worrying me. He sounds congested and is sneezing again. Before when he would get like this it would happen after he had been outside. He is such a loving cat, my baby! I am keeping a close eye on him..

Jim said something to me tonight that I just wanted to bring up again. Looks can be deceiving. what I mean by that is.....people see me going to the Y and say to Jim, saw your wife today at the Y and she was looking good. Or someone will see me out and say, you look good. What they don't see is what goes on before I get to the Y or what goes on before I leave the house. They don't see that I was laying in bed until 12 o'clock just trying to get the energy to get up to go to the Y. Laying in bed waiting for my pain meds to kick in and praying that today it would be enough for me to be able to leave the house. They don't see me hobble around the house, hunched over in pain trying to make it to the bathroom or down the stairs.
They don't see that it takes a great portion of my day just to be able to face the day.
If I have something planned for early in the day they don't get up with me extra early just to take my pain meds so that I can be able to get up and take a shower. I also pray that when I wake up early it is not going to be a flare day and that I can actually move. Even if I take my pain meds that doesn't mean I will have the energy to get ready....or that my arms will be strong enough for me to blow dry my hair. There are many a mornings Jim has seen me cry because I can't get ready!!! I never used to wear my hair in a ponytail, now that is how I wear it a good bit. There are days it even hurts to touch my head with my brush.
People don't see all the guts and glory that goes on behind the scenes......so the next time you see me and think I look good, take a moment and wonder what I went thru to get there.....

Wednesday, November 3, 2010

weather change

Well I knew it was going to happen no matter how hard I wished for it to stay away. The cold weather! It is here.....and my body is feeling it! The past couple of days have been hard for me to get going and I have been starting my days later and later. I really don't like that. My body is all out of sink. I have been going to bed about
11:30 but not going to sleep until about 1:30 and I have got to stop!!
I know better......winter is the worst time for my fibro and the one time of the year I must take care of myself and force myself to be on a schedule. This is not to say that I can let myself go the rest of the year by no means. Anyone that has fibro must take extra care of themselves I am an example of that. What I mean is........over a year and a half ago I started to gain weight from taking lyrica, I stopped excercising, I stopped walking, I could not get out of bed, my energy level was very low. Actually I had all those symptoms for over 4 years (minus the lyrica) what I am saying is I let myself go and gained 25 pounds and on my short body that is not good!!!! So, with the fibro beating me down having the extra 25 pounds on me only made it worse!!
Last winter my IBS was at an all time bad and again add with that the 25 pounds and then picture how I felt....not good!! There were days I scared myself and Jim....:(
So what I am getting to with all this rambling is, I cannot let these long, cold winter days bring me down!! I have got to get into a better routine and make myself stick to it!
I know alot of people say tanning beds are bad but I am going to be going to one this winter. I will not be going all the time. Just once in awhile. The warmth does make me feel good and when I am feeling really bad or starting to feel bad, 20 minutes in a tanning bed can change my whole day. And my mood.....and my husband is happy when I am in a good mood.
So, with all that being said I am now going to get my butt up and force myself to go to the Y and do some form of movement for 30 minutes....;)

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

LATELY I FIND MYSELF WANTING TO JUST THROW SOMETHING OUT OF PURE FRUSTRATION!!!!!!!!!
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 forward....it 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 nervous.....it 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

Anxious

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!!!

Wednesday, September 29, 2010

borrowing from someone else...

I truly hope this person doesn't mind but I am making my post for today someone else's comment. Someone commented on my husband post and I will call him comment # 4 because for the life of me I cannot remember his name and I just looked at it!!!
Anyway, I love what he said but more imprtantly I love that he supports what my husband says!!

I truly truly hate that Jim does not have a support person!! I know we talk about it, my fibro. I say it like it is some terrible thing that I am afraid to say....fibro, fibro, fibro...there I said it!!! But having another husband that is going thru the same emotions and struggles that he is and being able to vent to that person would be so wonderful!!! There has to be better support out there for our spouses!!!! Not only would it help him but it would help us!!!

I am saying all this and am now going to ask you to go and read the 4th comment that someone left on Jim's post Elephnats, Snapping Turtles and Frogs. I am sure I could cut and paste it over to here and I am sure I used to know how to do all that but for the life of me....can't remember how to do.....!!!! It is really great to be me.....

I couldn't read the comment without crying.....

Friday, September 24, 2010

elephants, snapping turtles, and tree frogs

Elephants, Snapping Turtles and Frogs

From Lynn’s husband

I know what your thinking, Lynn’s blog and two post in as many days what’s going on

Well I find myself having a desire to write something again on Lynn’s Blog. I keep asking myself why and what am I looking for. Well I have come to the conclusion that I am looking for a way to maybe reach either the women with fibro and or there husbands to let them know two things. If you are a women hopefully when you read what a spouse says about his wife and dealing with this I hope you understand that we are by your side each and every step, or lack of steps each day, we don’t always show it as men but we are trying to stay strong for you and for ourselves. And for the husbands because I want you to know that this is a lonely disease, who do we have to talk to? I mean really how many of us can talk to our hunting buddies, work buddies, family, motorcycle friends, heck even a stranger and explain the pain we as spouses go through when you cant even hold your wife, how it feels when you want to do something and you have to hold back because the one you love is in pain, the guilt you feel when you go alone somewhere because you have to get out and do something or have made a commitment days before and you cant truly enjoy yourself because your worried that your wife is at home in bed hurting and when it is all said and done you are helpless…… I was raised by two great parents that taught me that as the man I am to cherish, protect and love my wife, well with fibro some days there is no way to protect her because I cant see the enemy.

I struggle with the idea of Terminal diseases, there is a bunch out there and I won’t pick or name one but think of them, and now think of the invisible disease what is the difference? I can tell you in my opinion which obviously is skewed Fibro is the worst of the bunch, maybe I would feel differently if Lynn had one of those diseases seeing that we own them once we get them. I have read some interesting articles in my research on fibromyalgia, I am an internet surfer, and I spend a few hours a week looking at the old news and new information trying to find links, ideas and maybe a little insight on what can be done to make my wife feel a bit better. The part that is scary is when you start to really delve deep into the research you find two things, there isn’t much out there in the form of new news, and what is out there isn’t very good. Can anyone tell me how much is being spent on Fibromyalgia research? Not drug developments but actual cash being spent to find the cure and the cause. The medical dictionary defines such:
Terminal illness
Etymology: L, terminalis + ON, illr, bad
An advanced stage of a disease with an unfavorable prognosis and no known cure.

If this is a the true medical definition why hasn’t the medical field defined fibromyalgia as a terminal disease after seeing my wife suffer with this disease I can honestly say it isn’t favorable, and there is no cure. So where is the research money?? Somebody please search it and let me know I can’t find that figure anywhere.

Ok now that I have ranted and have lost my direction back to the elephants, snapping turtles and frogs.
Why did I title this post in such a manor after that positive start?

Elephants:

This is the section on memory, fibro fog and just plain forgetting. I was asked to explain fibro fog to a friend so I took him out drinking. After 8 beers I had a deep conversation with him regarding fibromyalgia and what it is like to have a wife with fibromyalgia, I waited 3 days and then asked him some questions about our conversation, he said he thinks he could remember us talking about it but didn’t recall exactly what was said I told him welcome to a glimpse of fibro fog as I understand it. Well after 4 years of dealing with Lynn and her fibro fog I am convinced fibro fog is worse, we have conversations about the same subject 3 or 4 times within 2 hours some days and then she wonders why I become a snapping turtle, obviously she doesn’t listen to me, obviously she doesn’t care what my opinion is, obviously there really is no point in talking to her any more about said subject. I would bet a paycheck and I only get paid once a month that every husband that has a wife with fibro has had at least one of those thoughts after 4 of the same conversations. How many people have either said or heard the words “I am not losing my mind we didn’t discuss that”


Snapping Turtles:

Lynn alluded to the snapping turtles in her most recent post, she is hurting, she is tired she is in pain, and guess who gets snapped at? Well I know it isn’t really her snapping at me it is the frustration with everything and I am the closest thing to her so the turtle rears its head and SNAP. In the mist of the snap I do my best to try to figure quickly if this is a snap I should argue with or just let it go as it is a reaction to the fibromyalgia. I have found that after about 3 days of a constant flare I also have the snapping turtle syndrome, well what do you expect I am selfish and I want and want and when I can’t and I am having to live with the fibro I can become snappy too it isn’t a one way street. It’s only after the snaps that we sometimes stop to realize that it is just frustration and tiredness from not being able to have what people call a normal life any longer. Snapping turtle syndrome is a very dangerous thing to have in our lives as when we snap we usually say the ugliest meanest things and hurts and does the most damage, the old saying of “sticks and stones will break my bones but names will never hurt me” is the biggest lie we tell kids growing up. Bones heal but the names and the snaps are always remembered. As a spouse and as the person with fibro we sometimes forget that it isn’t us they are snapping at it is just a release of anger and it’s a release of anger directed in the wrong direction most times.


FROGS:

I named this frogs because Lynn is petrified of tree frogs, I mean she will run in a heart beat if she see’s one. Why frogs because frogs are normally creatures that are cute to look at but rarely do we want to reach out and carry one in our hands nor does the frog want us to bother with them. I think fibro has a frog mentality to it for both the of us, and here is what I mean there are days when Lynn doesn’t want me to touch her I don’t mean it in the husband wife sorta way I mean in the just plain out and out I don’t want to be touched, I don’t want my clothes touching me I don’t want your hand touching me I don’t want anything touching me…when she gets like this there is no touching I mean not even kisses they hurt the expel of energy hurts. So how does a husband deal with that, I mean its rejection isn’t it? Or is it? I mean I want to touch I want to kiss I want to hold hands, yes its rejection I know this for a fact it is…. I know its rejection but it isn’t a rejection of me it’s a rejection of I hurt and this will cause more pain. I personally struggle the most with frogs because I need and want the touch of Lynn. And Lynn wants the touch of me this is true torment when you can not freely love your partner any longer, it’s always prefaced with how are you feeling, can I hold you, can I get a kiss. The CAN I gets old it gets in the way it takes away the freedom to just love and touch it takes from us. If you and your spouse struggle with this there isn’t much I can say to be positive here other then we haven’t quit trying and you cant let the fibro beat you here I personally think this is one of the areas in which you should fight the hardest, this is the area I can say that most men struggle with the most, the loss of touch the feeling of being wanted is part of what makes a man a man, we are physical creatures its in our DNA.


Parting Shots:
Wasn’t sure where to end this blog and I don’t know how to spell epilogue. So I will end this with a few parting shots.

Elephants , Snapping Turtles, and tree Frogs, are just that they are ways to an end, they help us put into prospective that we all have them, they may be different animals and they may be different situations but if you are fighting Fibromyalgia you will have them the sooner we realize the animals in our zoo the sooner we can find ways to work with them.

I saw a hat on a lady this summer that said cancer survivor, to all the men and women reading this you may not be a survivor yet but you are surviving, may not seem like it today but everyday you can wear that badge of honor not as a survivor but as someone who is surviving……….

For those of you that have spouse and they need or would like to talk with someone who knows what its like to live with a spouse with this disease feel free to let them know and let lynn know. I dont have the answers but i know the life.



Love you spunky

Monday, September 20, 2010

Where has my mind been..... Trying to find myself!!

Wow, it has been over a month since I last blogged so I warn you this might be and probably will be somewhat lengthy and I am sure all over the place. One of the reasons for me not blogging for so long is that I have had sooooo much on my mind and just not sure how to put it into words. It is hard to start back up again once you stop for awhile, you want to get all your thoughts out at once.....

I am such a strong woman, I never realized how strong I really was until people stared telling me how good I look. What I mean by that is, I have recently lost 20 pounds. (10 more to go to my pre marriage weight :) I have been laying out ,( this is my time of the year, summer) so I have a tan. Plus laying out is so relaxing for me, distresses me, and the only time I can focus enough to read. SO BECAUSE I LOOK GOOD, I MUST FEEL GOOD, RIGHT? WRONG!!!!! That is where being a really strong woman comes in! More and more people have been saying that I hide my pain very well....First that is because when I am in alot of pain, I don't go out! People don't see me wake 2 or 3 hours earlier than I have to just to take my pain meds if I have to be somewhere. Then I still have to pray that my energy level will allow me to leave the house. People don't see that when I first wake up sometimes I can't even tell Jim I love him right away or roll over into his arms because my body is fighting against me and I have to fight back just to get it to move! People see me when I want them to see me, for the most part!!!


I was talking to a friend the other day and he was going on about his leg hurting and something else was hurting and I was giving him a hard time because he is "mr healthy" and he said but it has been like this for about a month now and it is really frustrating him and I just chuckled and said, I love you but I am the wrong one to look to for sympathy on this one. I wasn't being ugly, just said imagine the pain being there 24/7! I AM A STRONG WOMAN!!! I DEAL WITH MY PAIN 24 HOURS A DAY 7 DAYS A WEEK AND PEOPLE DON'T EVEN NOTICE, for the most part!!! There are days where I don't leave the house. There are days I leave the house and if it wasn't for Jim, I would never make it.....

I have been dealing with this pain for many years now and trust me, it has changed me in so many ways. I am definitely not the same woman I was when Jim met me, I am always apologizing to him for that too. Then again I am sooooo blessed to have met him and married him because I could NEVER do this alone! The good Lord knew this was to be my life. Boy, I wish he would have clued me in a little bit though....haha!

My pain has made me such an angry, bitter person with less patience than I used to have. I was never known for being on time but now because of my lovely friend called fibro I really fight against that battle. Which is so unfair for Jim when he has to sit around waiting for me. He is usually great about it. There are times it gets to him but that is to be expected. I used to love to smile and now I have frown lines on my face!! THAT REALLY PISSES ME OFF!!!

Jim, is so the man of my dreams, loving, kind, funny, patient, sexy, my best friend in every way! ( he is not perfect though :) and can drive me crazy!!!) I started falling in love with him the first day I met him..........

I hate that I take my pain out on him!!! I snap at him when he doesn't deserve it! I hate that we are late to places because my pain and energy just STOPPED me from getting ready! I hate that I want him to hold me and he can't sometimes. I hate to see the look of pain in his eyes because he wants to take all this away from me and he can't!!

I hate that we fight because of my fibro....yes, MY fibro because I wouldn't want to give it to anyone else!! I WOULD LOVE to get rid of it though!!!!!

I am so very excited to be starting Tia Chi at the first of October with my husband :) I have heard so many good things about it helping fibro and having Jim with me is an extra bonus. Having Jim working out and encouraging me when I don't want to keep going is what keeps me going.

In the past month I have learnt that people are not who they say they are...:( People want you to think they are one way and they try and put on a front, then boom they show their real colors!! I don't have time for people like that in my life......

In the past month I have learnt that I want my own jeep!!! Jim and I saved enough and got us a 2005 Jeep. At first I was a little unsure about it because I know how Jim loves his trucks but now I am so happy he went with the Jeep. I am calling it my "Harley"! Riding around with the top off, the sun on me and the wind in my hair with the music playing, WOW it is AWESOME!! We got a Jeep parts catalog and to me it is like the old Sears Christmas Wish Book. I got thru it page by page....one day I will have my own. For now, Jim is letting me drive it to the beach next week...:)

This past month I have started getting ready for the winter months, I feel kinda like a bear getting ready for hibernation. Last winter was one of the worst of my life.....and I don't want a repeat!!!

Since my reunion, I have been keeping in touch with everyone and we are planning to get together again next year...:)

My pain level has been up and down as usual...my mornings suck!! I hate them!!! The first 2/3 hours of my day take so much out of me.......Most pain levels are done on a scale of 1 - 10, well mine goes up into the 100's sometimes!! My energy level can be nonexistent!!! I am now losing my hair (I don't have alot to begin with) my right wrist is in constant pain. I still have all the fun pains of my legs, ankles, hips, back, shoulders, neck and my head!!!! My IBS still keeps me weighing an extra 5 pounds every day and looking like I am 6 months pregnant. My IC is always there. So yes, my fibro is still with me and not showing any signs of leaving any time soon! O'yea my memory is getting way worse....spelling forget it!!!! All I can say is thank goodness for spell check!!!! And fibro fog IS REAL and living in my brain!!!

Well I am typing this with my eyes half closed so I say good night and sweet dreams.

























Tuesday, August 3, 2010

Not where I thought I would be?

Well our vacation ended way much better than it started. When we first got to the beach, I spent the first 2 days laying on the couch in so much pain I just wanted to take extra pain pills, curl up in a ball and wake up 4/5 days later. (just in time for the reunion) The next couple days after that were tough but I survived...it was really tough on Jim! I hate that so much, not only does my life suffer but his does as well and he didn't ask for this. He tries so hard to be patient and understanding (and does an awesome job) but it is still not easy for him!! He wants to go and do things, enjoy the beach and I am laying around....how do I deal with the guilt?
I ended up going to CVS and getting a muscle relaxer filled on top of my pain pills I had brought with me. I even talked to the pharmacist and was asking her for anything that would take away the pain.....it didn't help I just had to wait it all out!

I have friends that I love dearly that live at the beach that I want to see and spend time with but find myself hiding out when I get there. I want to call them and spend time with them so bad but do they really want to come over and spend the day laying around on the couch...I don't always want to talk. I want to see them but how do I explain ALL this to them??? How do I make plans and then have to cancel at the last minute??? They are used to the type A personality times 3!! I worked with some of the most wonderful ladies and love them dearly and consider them lifelong friends but hate that I can't be what they remember....Stephanie, Karen and Heather I love you!! 20 years of friendship...:)


Friday got there and everyone started to arrive for the reunion :) Friends that I have known for 34 years, we went to middle school together. I was lucky enough growing up to be a military BRAT. My father was in the Air Force and was stationed in Holland from 1973 - 1976 (not sure of the year we got there but I know we left in June of 76) While I was lucky enough to live there I was even luckier to make friends for life!!! Donna and Kathy I will always be there for you!! I was looking at every one's faces this past Saturday night and we still look the same.....we were such a close knit group. Not everyone could make it though and we are hoping to do a big reunion in 2013 back in Holland so maybe just maybe everyone can come. I really don't want to wait until then though to get back together with everyone, I think we should make the beach an annual trip...just a thought!!
I was so afraid that my pain and CFS would stop me from enjoying myself and I thank GOD for a very low pain weekend!! My friends know and were understanding of my limitations but I didn't want that to be a "part" of this weekend and it wasn't!! I was even able to go disco dancing for a little bit Saturday night.

I am on the other hand paying for it all now.....have NO energy, laying around doing nothing and I want to do something!!! I want to go to the gym, the grocery store....
My body is saying hahahahaha, not going to happen! You are going to do what I say!!!!
My yard has never looked as bad as is does right now....I walk outside or should I say trudge outside and get even more depressed. I used to be the WEED QUEEN! What I mean is I would be out there pulling weeds everyday just for the fun of it. It is a great for stress and it is so overwhelming to me right now....I used to have a vegetable garden and flower bed now it just looks like crap!!!!!!!!!!!! I used to at least have the energy to work an hour outside and for the past 2 months it just hasn't happened. I am overwhelmed by everything that needs to be done to our house!!! My rose bushes look terrible.....:(

I do find it funny but not funny because I know/believe they are linked together but my stomach is acting up at the same time??? HUUUMMM????I feel like I have a pump in my stomach blowing me up and it just plain ol hurts!! My bladder (IC) is acting up too!! Just my body/fibro saying, ok you had your fun now you are mine again! WELL DAMMIT, I DON'T WANT TO LET IT WIN!!!! I am going to do a little bit each day and slowly get back to feeling a little better. If I can just get myself to the Y for 20 mins on the bike or to a yoga class I know it will help! PLEASE GOD HELP ME!!!! I do know I cannot eat sugar.....fried foods and I did eat both this past week. I knew better but did it anyway. Dunkin Doughnuts was so good!!!

Looking back at the reunion and thinking back to the 70's.....I NEVER THOUGHT I WOULD BE WHO I AM TODAY!!!!!

Tuesday, July 20, 2010

What do I write about today?

Do I write about getting a call from our lawyer today about something we thought was all taken care of and come to find out wasn't? That my stress level went thru the roof and my body then went into overload!!!
Do I write about going broke trying to keep me in meds and natural supplements. On the chance and a prayer that if I take them they will help me get thru the day!! I mean come on, someone please tell me why COQ10 is so freakin expensive??? And if it is supposed to help me with energy then how long do I have to wait for it to work?? And is it really going to help me....we will see????? Of course I have to fight the urge to sit around and do nothing!! I have to make my body move....FOR ONCE I WOULD LOVE TO NOT HAVE TO FORCE MYSELF TO MOVE!! I WANT TO BE ABLE TO RUN AROUND AND PLAY....

Jim was just wanting to be playful last night and I just didn't.....just tickle me. I HATE BEING SICK!!!!!!!!!!!!!!!!!!!!!! People just don't get it!!!!

Do I write about crying thru out the day at the drop of a hat? Do I write about how I need a purpose to my days? I wake up and really don't have much to do but then again what can I do? What can I plan to do other than just get thru my day? My purpose right now is to try and be a little bit like the old me every day. Try to be as "normal" as possible.....not even sure I know what that is :)


My thing lately has been not knowing what to do with myself. I hate that I cannot be more productive...

I hate the way my body feel when I wake up in the morning. After a restless nights sleep (usually wake up several times due to pain in my back, hips and my stomach) it feels like every nerve in my body is on fire and hurts! It is really kinda hard to explain but I HATE it!! I almost don't want to get up but I can't stand laying there either!! I know if I do I can take my meds and will start to feel better . What I mean by feel better is, the "funky" feeling will go away!! The first hour, hour and a half of my morning is hell for me!!!

I know this is awful of me to say but there are certain people that I wish would have to live 2 weeks in my shoes!! Just be living their lives and then all of a sudden BOOM.... Just 2 weeks because I wouldn't wish this on anyone for a lifetime...it is a life sentence of pain and life changing fatigue. They talk about me behind my back and don't think I know....act as though they are concerned when really they think I am full of bull and could be working and should be working!! That I let myself get into the situation I am in by choice!!!!!! Don't be fake!!!! I know this person better than they realize I do!!!!

I JUST WANT TO FEEL LIKE THE OLD ME......SOOOO BAD!!!!!!!!

Friday, July 16, 2010

hip pain

Well I went to my fibro doctor yesterday and now have some new "natural" supplements to try. Nothing exciting but to me anything that will help is a blessing...I am going to be increasing my magnesium milate by 1000 mg and am starting coq10. Something I did not know but my doctor wants me to start taking an aspirin a night before I go to bed, she says it will help with my memory. There is a certain one she told me to take but I will have to post which one it is later because the paper is downstairs and my pain meds have not kicked in yet. My memory has gotten soooo bad!!!!


One thing we talked about while I was there was my hip pain so I got a cortisone shot in my left hip. I am so glad I didn't get one in my right hip like I was going to ask for....because about 1:30 this morning I woke up the pain was so bad!!! I laid there trying to move and not make to much noise ( I didn't want Jim to hear me crying) I finally had to wake Jim up and ask him to get my heating pad out for me. I have not had pain like that since I was a little girl and we lived in England. (if my mom reads this, she will know what i am talking about) It was terrible...my mom just had hip replacement surgery and i only hope and pray that i never have to go thru that. If the pain is anything like it was last night, O my goodness!!! My mom is such a strong woman!!!!



I have got to get motivated!!! I don't know what is going on with me??? I just can't seem to get anything done. Usually I can wash clothes, dry them and put them away in the same day...not anymore it seems. :) I feel lately as though I have no purpose anymore. Since I got sick and had to quit working I have tried to come to terms with all this and still haven't, I wonder if I ever will? I mean how many times can I clean the house? How many times can I work in the yard? And then when I do do those things it takes me all day to do a quarter of what I used to be able to do! Does that make sense??? Then when I do something, after I am done I need to lay down for awhile to recoup some energy to finish my day. I mean a 46 1/2 year old having to take a nap every afternoon, come on now.....I thought I got to stop doing that when I left grade school :)
I don't know lately I have just been wondering what there is out there for me to do? I used to work no less than 50/55 hour work weeks, usually with no less than 10 to 15 hours of travel time included. I was a district manager for 15 years then when I got married to Jim and moved to Greensboro I switched jobs and became a manager. With that job I worked on average 50 hours a week too.
When I first got sick there was NO WAY I would/could even think about working 10 minutes in a day. Now some days I feel as though I could work for an hour here one day then maybe an hour here another day. Not necessarily work, maybe volunteer somewhere. I just want to do something have a purpose. I mean 1 day I feel like I could work 1 hour then the next forget it!! Or if I make plans to do something with someone whether it be the next day or the next week I have to pray that I can do it!! My body changes from one minute to the next on what it will allow me to do!!!! I know I am just rambling on again as I usually do...it's just where my mind has been!

I am starting back to the Y!!! Since I have this time on my hands I am going to use it to get some of my "loose" skin to tightened up. The old fashioned way.....It will probably take me a couple years to do it but I am going to do it.....

Thursday, July 15, 2010

Good morning

I have not blogged in awhile....how do I follow what my husband wrote??

First let me say, I didn't think it was possible to love my husband any more than I did, WRONG!!! I fall more in love with Jim everyday!! Everything he wrote was sooo true. It was a huge eye opener for me and since he wrote it I am happy to report we have danced in the kitchen 3 times and have layed on the SAME couch together several times. :)
Having fibro sucks beyond anything I can imagine and I never thought I would be dealing with a life of pain but God soo blessed me with Jim. I could not do this without him!!!!

I am sorry I am not blogging as much lately as I should be, just not feeling like it. I have become so lazy this past month! I have got to get out of it!! I am gaining weight and I am hating it!! I feel my body getting thick again and I am starting to eat more!!!!!!!!!!!!

I went to my female doctor 2 weeks ago and found out that my testosterone level was wayyyyy low so I am now using a little testosterone gel and I am so afraid that it is what is making me feel thick. When actually it is me not working out, me not walking!! I am being lazy!! I have got to get active!!! I cannot sit around!!! Please someone give me a swift kick in the butt!!!!

OK AS OF RIGHT NOW I AM GOING TO NOT BE LAZY!! I AM GOING TO GET UP AND BE ACTIVE!!! I AM GOING TO DO 30 MINUTES OF EXERCISE A DAY!!!

I worked too hard to loose this weight and have 13/15 pounds more to go and AM going to loose it!!! So NO more excuses.....just because I have CFS, I can still do this!!!! RIGHT???? I am trying to pump myself up....:)
So I am going to get up.....bye