Why does my pain and fatigue have to interfere with my fun??? Today has been a very relaxing day....Jim and I ventured out for lunch and to the grocery store. On the way to lunch my energy was zapped from me. I was in a good mood but my pain and tiredness was for front in my mind, does that make sense? We had a fun conversation but I was having to focus part of the time on not falling asleep. When we were walking into the rest. my legs felt like dead weight....I just hurt from head to toe. I wanted to be out with my husband, he does so much for me and gives up so much...
Made it thru the grocery store and home...
Once we got home I had this really fun kinda family time idea...let's take Maggie for a walk in the cold...Kyle had come home and was going to go with us. Something he never does so I was excited. Nothing like slipping as you walk. It was fun holding Jim's hand....:) Well, a quarter of the way into the walk I realized I had not taken my meds. I didn't think I was going to make it up the first hill and we had another big one to go. Jim asked if I needed to turn around and I was determined to make it. I felt like I was carrying 100 extra pounds. ( not my extra fat but like a back pack or something) The pain in my legs and feet was unreal. My shoulders and neck are making me feel nauseous....my hips are on fire. In spite of all that, this has been a great day with Jim.
My body has been having some major twitches, they seem to be getting stronger and more often..
I also need to say that I am slowly cutting out my Lyrica. I have gone from 150mg, to 75mg and am now on 50mg. I can tell a BIG difference. Lyrica REALLY does work for my pain, I just cannot stand the swelling or the weight game! I know that Lyrica is not the only reason for my weight gain but I have to find something that doesn't contribute!!!
We cooked tri tip on the grill and veggies in the oven...awesome.
Now we are sitting here in front of the fire and Jim is singing to Bon Jovi...yes, I can imagine what you are thinking right now if you know him.
I am sitting her trying not to nod off...I am very relaxed!! My knees are on fire as well as my hips but I am enjoying this......
This site is designed to record the progress of living with, dealing with, and trying to understand the Invisible Disease. I hope to have post from myself, my husband, and my children on what its like as a family to live and deal with Fibromyalgia.
Sunday, January 31, 2010
Thursday, January 28, 2010
Really trying
I am really trying to stay positive....The past 2 weeks have been the best 2 weeks in the last 2/3 years. My pain has been manageable. I have been able to get thru my days without my pain adding to my fatigue. I am usually so tired that my day is unbearable and my pain on top of that just makes me not want to live. I think that is the first time I have actually said that!!! I keep so much of my misery inside. I know some of it shows but what is on the inside goes so deep.....
OK I started this yesterday and am back now to finish...the cold weather does not agree with me. I am sitting here and I am afraid to walk. I feel like my ankles are going to break. The pain is so intense, I am eating when I don't need to be. I just realized I am eating because of my pain. That would explain why I have gotten so fat!! ALOT OF INTENSE PAIN ALOT OF EATING!!!
My legs feel like they are on fire and my shoulders too. My shoulders have a pain that is just so hard to explain. I am sitting here watching tv and you would never know I am hurting, except that I was eating for no reason.
Ok I am trying to stay awake, my neck weighs a ton as do my eyes...:(
I have had some pretty good days....I almost felt kinda normal and it felt so good. I am positive I am going to be having some more.
Jim made me 2 appointments for next Wednesday with 2 new places. 1 is in Raleigh, The Duke Pain Clinic and a fibro specialist in Cary. He is such a great man.
I am still working out 3/4 days a week. Well if you call riding the bike exercise. I am working up to bigger and better....I really want to do this!!! Realizing that I eat when I am in pain hopefully will help.
By the way it is snowing and it looks beautiful. Tonight is supposed to be the brightest, biggest moon of the year....thinking about a short walk...:)
OK I started this yesterday and am back now to finish...the cold weather does not agree with me. I am sitting here and I am afraid to walk. I feel like my ankles are going to break. The pain is so intense, I am eating when I don't need to be. I just realized I am eating because of my pain. That would explain why I have gotten so fat!! ALOT OF INTENSE PAIN ALOT OF EATING!!!
My legs feel like they are on fire and my shoulders too. My shoulders have a pain that is just so hard to explain. I am sitting here watching tv and you would never know I am hurting, except that I was eating for no reason.
Ok I am trying to stay awake, my neck weighs a ton as do my eyes...:(
I have had some pretty good days....I almost felt kinda normal and it felt so good. I am positive I am going to be having some more.
Jim made me 2 appointments for next Wednesday with 2 new places. 1 is in Raleigh, The Duke Pain Clinic and a fibro specialist in Cary. He is such a great man.
I am still working out 3/4 days a week. Well if you call riding the bike exercise. I am working up to bigger and better....I really want to do this!!! Realizing that I eat when I am in pain hopefully will help.
By the way it is snowing and it looks beautiful. Tonight is supposed to be the brightest, biggest moon of the year....thinking about a short walk...:)
Tuesday, January 26, 2010
Good Times - Tuesday
Wow another pretty good day, I am loving it!! My pain level was about a 4 out of 10 and my energy level has been about a 7! I went to the Y today and rode the bike for 45 minutes and probably could have kept on riding if I didn't have to get my cat to the vets. I thought about going back but chose to clean my blinds instead. Didn't get them done but they are starting to look clean.
Sunday, January 24, 2010
Crappy Night, Crappy Morning!!
Couldn't fall asleep last night so I took a sleeping pill. The pain in my hips, legs and feet was so bad it woke me up and pretty much kept me up off and on. (not a very strong sleeping pill?) The pain in my stomach is at the point where I am ready to take a knife and just cut it out!! NO KIDDING!!!! This has been going on for over a week....I hate it with a passion when it gets like this. Every couple of weeks my stomach gets like this. In the middle of the night, the pain shoots thru my stomach and I can't move because it is so bad. I feel like I have a pound of gas in there that doesn't want to come out. My stomach is fat but when it is like this, I look like I am 9 months pregnant. The pain is unbelievable and won't go away. I can go to bed and my stomach feels fine but during the night, it kicks in. Not only do I wake up in pain and felling like crap from the fibro, cfs, but I have this on top of it!! I am not very pleasant in the morning and this morning was a good example of that. I feel so bad for Jim because I hate him having to wake up to a nasty, grumpy wife!
I really hope my stomach pain goes away soon......I just need to eat only 1 thing for a week, then switch it off until I figure out what it is that does this to me. OK I am now starting to fall asleep but I am going to get up instead....I want to be able to sleep later.
Plus I am getting a headache......so I am going to take a shower and try and make the last 10 minutes of church and then ride the bike while Jim takes down church
I will blog later today....
I really hope my stomach pain goes away soon......I just need to eat only 1 thing for a week, then switch it off until I figure out what it is that does this to me. OK I am now starting to fall asleep but I am going to get up instead....I want to be able to sleep later.
Plus I am getting a headache......so I am going to take a shower and try and make the last 10 minutes of church and then ride the bike while Jim takes down church
I will blog later today....
Tuesday, January 19, 2010
Broken Heart
I feel as though my heart was broken today. I know this will not make sense unless you have been threw this....
I always thought I had an awesome doctor until my visit before last.
I went to see him about getting off Lyrica because of my weight gain. He politely told me I was "fat" (my words not his) before I started the Lyrica and that the meds were not the cause. I wanted to get off them because of the swelling it causes. I left there crying and pretty upset.
So why did I go back today? I had made another appointment to get off the Lyrica ( I was not crazy) and to talk to him about me being tested for ME/CFS. I have at least 70% of the symptoms and my life someday is almost unbearable because of it. Jim went with me because I wanted and needed his support. Jim sees me suffer daily with this disease....Jim has also been helping me do research and I wanted him to hear what my doctor had to say. My memory is not all that great and I didn't want to miss anything in telling him what my doctor said.
I started tell my doctor why I was there today and the look on his face as soon as I started talking said it all. It was a smug look (Jim said he didn't see it) He asked me why I had gotten off of Lyrica before and then back on. I told him because of my swelling and got back on because it helps my pain. I did lower my dosage to 1/2 at the time. At the time I mentioned Savella and he knew nothing of it (drug they use for Fibro) he blew that off. Told me he would look into it but I am sure he didn't because when I asked him about it he was very evasive, no real answer. I asked him about it today and he said he knew nothing about it. Well that just lets me know he lied to me back then.
When I asked him about ME/CFS he didn't know what ME was. Jim had to show him the word because it is hard to say. Well then he kinda smiles and told us that it was something to do with swelling of the brain tissue and that I don't have that. Again, he doesn't know what it is. Was he even willing to check it out? NO!! He basically told me he couldn't do anything else for me and that i needed to find another doctor. NOT A PROBLEM!! I had exhausted what he knew to help me with. BULL CRAP, HE IS JUST TO LAZY TO DO ANY RESEARCH AND ONLY WANTS TO DO EASY CASES!!! I felt so let down!!! Feel let down. This is a doctor that helped me fight to get my disability!
On my last visit he was frustrated about having to work so many hours and not getting anymore pay. Actually venting to me, his patient!! Complaining about everything, he was in a bad mood!
I know he is not a speciality doctor but I thought he was a caring doctor......
I will find me the perfect doctor!!!!
I always thought I had an awesome doctor until my visit before last.
I went to see him about getting off Lyrica because of my weight gain. He politely told me I was "fat" (my words not his) before I started the Lyrica and that the meds were not the cause. I wanted to get off them because of the swelling it causes. I left there crying and pretty upset.
So why did I go back today? I had made another appointment to get off the Lyrica ( I was not crazy) and to talk to him about me being tested for ME/CFS. I have at least 70% of the symptoms and my life someday is almost unbearable because of it. Jim went with me because I wanted and needed his support. Jim sees me suffer daily with this disease....Jim has also been helping me do research and I wanted him to hear what my doctor had to say. My memory is not all that great and I didn't want to miss anything in telling him what my doctor said.
I started tell my doctor why I was there today and the look on his face as soon as I started talking said it all. It was a smug look (Jim said he didn't see it) He asked me why I had gotten off of Lyrica before and then back on. I told him because of my swelling and got back on because it helps my pain. I did lower my dosage to 1/2 at the time. At the time I mentioned Savella and he knew nothing of it (drug they use for Fibro) he blew that off. Told me he would look into it but I am sure he didn't because when I asked him about it he was very evasive, no real answer. I asked him about it today and he said he knew nothing about it. Well that just lets me know he lied to me back then.
When I asked him about ME/CFS he didn't know what ME was. Jim had to show him the word because it is hard to say. Well then he kinda smiles and told us that it was something to do with swelling of the brain tissue and that I don't have that. Again, he doesn't know what it is. Was he even willing to check it out? NO!! He basically told me he couldn't do anything else for me and that i needed to find another doctor. NOT A PROBLEM!! I had exhausted what he knew to help me with. BULL CRAP, HE IS JUST TO LAZY TO DO ANY RESEARCH AND ONLY WANTS TO DO EASY CASES!!! I felt so let down!!! Feel let down. This is a doctor that helped me fight to get my disability!
On my last visit he was frustrated about having to work so many hours and not getting anymore pay. Actually venting to me, his patient!! Complaining about everything, he was in a bad mood!
I know he is not a speciality doctor but I thought he was a caring doctor......
I will find me the perfect doctor!!!!
Saturday, January 16, 2010
M IS FOR MEMORY, MONETARY,MEDICAL BILLS, MEDICINE
Well I was all set to write about how my memory is shot, how my sickness has caused us some very hard times monetarily and how my medical bills never seem to end. But instead I want to talk about what an AWESOME day this has been!!!
Last night I took a sleeping pill because I wanted to sleep thru the night. I was so afraid that I would have a hard time waking up this morning for church but guess what? I woke right up when Maggie came in to get me to let her out. I laid back down and of course I fell asleep, a really good sleep. Some one wanted me to go to church this morning because I woke up again at 8:30. Woke right up and was able to move right away. That NEVER happens!!!
I made it to church on time!! ( Jim left before me)
I DID NOT HURT!!! Let me clarify, on a scale of 1-10, my pain was about a 2/3. To me that is pure joy! As the service went on, my pain went to a BiG FAT ZERO!!! I mean I had no pain at all!! That is the first time in almost 2 years that I have not hurt one bit. I kept moving around waiting for something to hurt but nothing did. Every Sunday during the prayer request, my fibromyalgia is brought up and how everyone continues to pray for me. Especially Al and Sandra Powell. After prayer requests were done before Pastor Childs gave his sermon, I raised my hand to speak. I just had this over whelming urge to Thank everyone for their prayers. I got choked up because it was a very powerful feeling.
Jim and I went to lunch after church with some friends, no pain!!
Jim and I went to the movies after lunch, no pain!! Went to see Avitar, really good movie!!
Came home, cooked supper (not to good) started to hurt, got really really tired, could not stay awake. Jim went to visit his parents and I stayed home to veg out. Really wanted to see them but didn't have the energy.
When Jim came home, I was falling asleep but my pain is only about 3!!!!!!!!!!!!!!!!!!!!!!
Now we are watching 24 and it seems like it is going to be good this year.
Well I am off to bed now and my pain is about a 3 still....
I AM SO HAPPY.......PLEASE PRAY THIS CONTINUES, I KNOW IT WON'T BUT I CAN HOPE...
Last night I took a sleeping pill because I wanted to sleep thru the night. I was so afraid that I would have a hard time waking up this morning for church but guess what? I woke right up when Maggie came in to get me to let her out. I laid back down and of course I fell asleep, a really good sleep. Some one wanted me to go to church this morning because I woke up again at 8:30. Woke right up and was able to move right away. That NEVER happens!!!
I made it to church on time!! ( Jim left before me)
I DID NOT HURT!!! Let me clarify, on a scale of 1-10, my pain was about a 2/3. To me that is pure joy! As the service went on, my pain went to a BiG FAT ZERO!!! I mean I had no pain at all!! That is the first time in almost 2 years that I have not hurt one bit. I kept moving around waiting for something to hurt but nothing did. Every Sunday during the prayer request, my fibromyalgia is brought up and how everyone continues to pray for me. Especially Al and Sandra Powell. After prayer requests were done before Pastor Childs gave his sermon, I raised my hand to speak. I just had this over whelming urge to Thank everyone for their prayers. I got choked up because it was a very powerful feeling.
Jim and I went to lunch after church with some friends, no pain!!
Jim and I went to the movies after lunch, no pain!! Went to see Avitar, really good movie!!
Came home, cooked supper (not to good) started to hurt, got really really tired, could not stay awake. Jim went to visit his parents and I stayed home to veg out. Really wanted to see them but didn't have the energy.
When Jim came home, I was falling asleep but my pain is only about 3!!!!!!!!!!!!!!!!!!!!!!
Now we are watching 24 and it seems like it is going to be good this year.
Well I am off to bed now and my pain is about a 3 still....
I AM SO HAPPY.......PLEASE PRAY THIS CONTINUES, I KNOW IT WON'T BUT I CAN HOPE...
Wednesday, January 6, 2010
O IS FOR OBLIVIOUS - people are oblivious about fibromyalgia!!
I am going to my doctor next week to talk to him about me having me/cfs. After doing some research, it makes a lot of sense. (along with fibro) I am hoping he can help direct me to a doctor that specializes in this area. My pain never lets up. There is not a day that goes by where I don't hurt. My hips are really really giving me a fit. No matter what I am doing, they hurt. I wake up through out the night because of it....
My energy level is non existent!! I am always so tired. The kind of tired that doesn't go away. People say, yea, I am tired too, I didn't sleep well last night
Today has been an ok day for me. I was able to go to church...Maggie woke me up about 5:30 so I took my meds and was able to move...yea. I actually was able to come home and clean my bedroom...towards the end I was having to make myself finish! I hurt sooo bad and it was making me want to scream. I wanted to just lay down and sleep :( but I didn't...
I used to be able to take my meds about 7:30 am and was good until about 4, Now I am good until about 2:00. I have been wanting to take another dose about 9pm but have not. There are people I talk to on a regular basis that take up to 6/7 different pills a day. This is not an easy disease to live with, for me or Jim!!!
Some of my nights have not been so good. I can't sleep because I hurt so I start doing busy work and then could be up until the early am, which is not fair to Jim. He doesn't sleep well unless I am in bed with him. I love to snuggle with him :) My cat loves to snuggle too, He isn't feeling to well either and we keep each other company....He loves to sleep on my chest, as he is doing right now. He has gotten so big, he covers my entire upper body. That is pretty big too....haha!
My twitching has gotten alot worse too, I am sitting here typing and my whole body keeps jerking. My legs, my arms, my head. Some of the twitches are pretty big. Not fun!!! They scare me sometimes....that is the first time I admitted that :(
People don't have any idea what I truly go thru...I do a very good job of faking it....they don't see behind closed doors. They don't see me get out of bed in the morning. They don't get how bad I am hurting. They don't know what it is like to do the simplist chore and be exhausted afterwards. There are some days I have to push myself for hours and that alone exhausts me for hours afterwards. I smile and I laugh but on the inside I am in pain, if people only knew......
I just spoke to my friend Paul and I am here to say he can be a butt but he loves me and has a big heart. I love you too Paul Paul!!! Thank you for wanting to try and fix me but please remember not all things can be fixed!!
I am going to my doctor next week to talk to him about me having me/cfs. After doing some research, it makes a lot of sense. (along with fibro) I am hoping he can help direct me to a doctor that specializes in this area. My pain never lets up. There is not a day that goes by where I don't hurt. My hips are really really giving me a fit. No matter what I am doing, they hurt. I wake up through out the night because of it....
My energy level is non existent!! I am always so tired. The kind of tired that doesn't go away. People say, yea, I am tired too, I didn't sleep well last night
Today has been an ok day for me. I was able to go to church...Maggie woke me up about 5:30 so I took my meds and was able to move...yea. I actually was able to come home and clean my bedroom...towards the end I was having to make myself finish! I hurt sooo bad and it was making me want to scream. I wanted to just lay down and sleep :( but I didn't...
I used to be able to take my meds about 7:30 am and was good until about 4, Now I am good until about 2:00. I have been wanting to take another dose about 9pm but have not. There are people I talk to on a regular basis that take up to 6/7 different pills a day. This is not an easy disease to live with, for me or Jim!!!
Some of my nights have not been so good. I can't sleep because I hurt so I start doing busy work and then could be up until the early am, which is not fair to Jim. He doesn't sleep well unless I am in bed with him. I love to snuggle with him :) My cat loves to snuggle too, He isn't feeling to well either and we keep each other company....He loves to sleep on my chest, as he is doing right now. He has gotten so big, he covers my entire upper body. That is pretty big too....haha!
My twitching has gotten alot worse too, I am sitting here typing and my whole body keeps jerking. My legs, my arms, my head. Some of the twitches are pretty big. Not fun!!! They scare me sometimes....that is the first time I admitted that :(
People don't have any idea what I truly go thru...I do a very good job of faking it....they don't see behind closed doors. They don't see me get out of bed in the morning. They don't get how bad I am hurting. They don't know what it is like to do the simplist chore and be exhausted afterwards. There are some days I have to push myself for hours and that alone exhausts me for hours afterwards. I smile and I laugh but on the inside I am in pain, if people only knew......
I just spoke to my friend Paul and I am here to say he can be a butt but he loves me and has a big heart. I love you too Paul Paul!!! Thank you for wanting to try and fix me but please remember not all things can be fixed!!
Tuesday, January 5, 2010
What you don't know about my life with FIBROMYALGIA
R IS FOR RAGE, REGRET AND RESPONSIBILITY
Lately I have been wanting to fly off in a rage when pain my gets really intense!! I am so tired of hurting and trying to live a normal life. As I have said before, people look at me and think I look fine or they way I behave I am not in pain. I have been suffering with some sort of pain since October of 2007 and I am so tired!!! Some days I brush my hair and that alone can set me off. The pain and the frustration makes me want to just throw my brush and break something!! I mean come on brushing my hair.....it hurts my head, my arms hurt moving them.
I want to scream at the top of my lungs sometimes when I can't do something.....I want to rant and rave....
I regret that Jim is having to live this with me. It affects not only me but him as well. I asked him last night if he would love me forever and stay with me forever??? In sickness and health till death do you part!!! He said yes, sometimes I just need to hear that. I know this is so hard on him...I am not easy to live with, haha!! I have become a less happy person and I admit I take some of it out on him. I don't answer him as nicely as I used to. I snap alot easier than I used to. Believe it or not, I used to be a pretty happy person. Being in constant pain really wares on you... This has also changed Jim too. Jim's patience with me is really changing, understandable!!! Our marriage is strong but we are having to really TALK to each other more often to make sure we don't loose focus on each other!!
Jim and I are responsible to each other.....
Today is going to be a good day....I AM GOING TO MAKE IT THAT WAY!!! I have that mental attitude now lets see if my body will work with me.
Lately I have been wanting to fly off in a rage when pain my gets really intense!! I am so tired of hurting and trying to live a normal life. As I have said before, people look at me and think I look fine or they way I behave I am not in pain. I have been suffering with some sort of pain since October of 2007 and I am so tired!!! Some days I brush my hair and that alone can set me off. The pain and the frustration makes me want to just throw my brush and break something!! I mean come on brushing my hair.....it hurts my head, my arms hurt moving them.
I want to scream at the top of my lungs sometimes when I can't do something.....I want to rant and rave....
I regret that Jim is having to live this with me. It affects not only me but him as well. I asked him last night if he would love me forever and stay with me forever??? In sickness and health till death do you part!!! He said yes, sometimes I just need to hear that. I know this is so hard on him...I am not easy to live with, haha!! I have become a less happy person and I admit I take some of it out on him. I don't answer him as nicely as I used to. I snap alot easier than I used to. Believe it or not, I used to be a pretty happy person. Being in constant pain really wares on you... This has also changed Jim too. Jim's patience with me is really changing, understandable!!! Our marriage is strong but we are having to really TALK to each other more often to make sure we don't loose focus on each other!!
Jim and I are responsible to each other.....
Today is going to be a good day....I AM GOING TO MAKE IT THAT WAY!!! I have that mental attitude now lets see if my body will work with me.
Monday, January 4, 2010
B IS FOR BLADDER PROBLEMS, BEING A BOTHER, BAD DAYS, BROKEN MENTALLY, PHYSICALLY AND SPIRITUALLY!!
My journey with fibro really started with me having a bladder condition called IC. (hardening of the bladder) I am going to attempt to spell it out..Interstitial Cystitis. It started about 4 years ago with alot of pain and after several doctor visits it was decided I needed surgery. Now mind you I have never been put under before. I had the surgery and was out of work for about a week. Went back to work and I just couldn't do it!!!1 I tried and went in one morning and I just lost it, I mean lost it!! I had only been back at work about a week and was so tired and hurt so bad!! I thought it was from my surgery....when I say tired, I mean an exhaustion to end all exhaustion!! I could not take it anymore and just started yelling at my employees and then just walked out!! I mean quit!! There went my income and trust me, we needed it. I had an emotional break down then went home and stayed in bed for about a week! I couldn't move if I wanted to. I felt like I had been hit by a mack truck. (the truck is still parked on me by the way)
Since then I have felt like a huge burden to my husband in all ways. I put out finances into a complete downward spiral! I was no longer the woman he married in every way...
In the past 4 years I would say 70% of my days have been bad days!!! That is so not fair to Jim...I have pain every single day! The level of pain varies but it is always there. I have a friend that hurt his leg and it hurt him for awhile and he would complain and I would think, imagine your legt hurting to the max everyday for 4 years, you couldn't handle it!! No one really gets what I go thru except for someone going thru it. I admit, when people are hurting I can be so unsympathetic. I don't let them know that, I am just jealous because I know there pain will stop!!! My husband trys. He is so loving and supportive, he really trys!! That means the world to me. I have days where I am really in pain and I get so angry and I admit I do take some of it out on him. I am so afraid he will become bitter towards me. I am so sorry baby, I love you!!!!
People want to try and fix me and what they don't get is, YOU CANNOT FIX FIBROMYALGIA!!! ALL I CAN DO RIGHT NOW IS TRY AND MAKE MY LIFE AS PAIN FREE AND LIVABLE AS I CAN!! I take pain pills, not to get high but to be able to function. In fact the only high I get is that my pain is gone for a little bit. Trust me, I remember what it feels like to be high and this is not it!!
The fatigue is unbearable!!! I get so worn out some days just doing the most simple things. People do not realize what it takes for me to be able to the simplest tasks. They just look at me and see me doing it and think, whats the big deal, she looks fine to me. My friends and family do not what torture I am going thru on the inside. Don't get me wrong, I am not trying to sound bitter or anything. I so love my family and friends!! They are the best!!!
This past Sunday I made it to church, that was such a task. Getting in the shower was such a task because of pain and I wanted to sleep. OK I am sitting here trying to stay awake and cannot so I am just going to write tomorrow... I fell asleep with my finger on the 8 key 888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888
Having this awful disease has really made me ask GOD, why?? I know he has a master plan and is testing me but WHY??? In the past 4 years, I have had enough stress to last me a life time. I ask why does Jim have to suffer so much with me?? I believe that GOD put Jim in my life for a reason. He is the perfect man for me and makes my life livable. I worry every day that I am going to become to much of a bother to him.
At the same time my faith in GOD has become so much stronger....
My journey with fibro really started with me having a bladder condition called IC. (hardening of the bladder) I am going to attempt to spell it out..Interstitial Cystitis. It started about 4 years ago with alot of pain and after several doctor visits it was decided I needed surgery. Now mind you I have never been put under before. I had the surgery and was out of work for about a week. Went back to work and I just couldn't do it!!!1 I tried and went in one morning and I just lost it, I mean lost it!! I had only been back at work about a week and was so tired and hurt so bad!! I thought it was from my surgery....when I say tired, I mean an exhaustion to end all exhaustion!! I could not take it anymore and just started yelling at my employees and then just walked out!! I mean quit!! There went my income and trust me, we needed it. I had an emotional break down then went home and stayed in bed for about a week! I couldn't move if I wanted to. I felt like I had been hit by a mack truck. (the truck is still parked on me by the way)
Since then I have felt like a huge burden to my husband in all ways. I put out finances into a complete downward spiral! I was no longer the woman he married in every way...
In the past 4 years I would say 70% of my days have been bad days!!! That is so not fair to Jim...I have pain every single day! The level of pain varies but it is always there. I have a friend that hurt his leg and it hurt him for awhile and he would complain and I would think, imagine your legt hurting to the max everyday for 4 years, you couldn't handle it!! No one really gets what I go thru except for someone going thru it. I admit, when people are hurting I can be so unsympathetic. I don't let them know that, I am just jealous because I know there pain will stop!!! My husband trys. He is so loving and supportive, he really trys!! That means the world to me. I have days where I am really in pain and I get so angry and I admit I do take some of it out on him. I am so afraid he will become bitter towards me. I am so sorry baby, I love you!!!!
People want to try and fix me and what they don't get is, YOU CANNOT FIX FIBROMYALGIA!!! ALL I CAN DO RIGHT NOW IS TRY AND MAKE MY LIFE AS PAIN FREE AND LIVABLE AS I CAN!! I take pain pills, not to get high but to be able to function. In fact the only high I get is that my pain is gone for a little bit. Trust me, I remember what it feels like to be high and this is not it!!
The fatigue is unbearable!!! I get so worn out some days just doing the most simple things. People do not realize what it takes for me to be able to the simplest tasks. They just look at me and see me doing it and think, whats the big deal, she looks fine to me. My friends and family do not what torture I am going thru on the inside. Don't get me wrong, I am not trying to sound bitter or anything. I so love my family and friends!! They are the best!!!
This past Sunday I made it to church, that was such a task. Getting in the shower was such a task because of pain and I wanted to sleep. OK I am sitting here trying to stay awake and cannot so I am just going to write tomorrow... I fell asleep with my finger on the 8 key 888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888
Having this awful disease has really made me ask GOD, why?? I know he has a master plan and is testing me but WHY??? In the past 4 years, I have had enough stress to last me a life time. I ask why does Jim have to suffer so much with me?? I believe that GOD put Jim in my life for a reason. He is the perfect man for me and makes my life livable. I worry every day that I am going to become to much of a bother to him.
At the same time my faith in GOD has become so much stronger....
Sunday, January 3, 2010
I IS FOR INVISIBLE, IC (BLADDER PROBLEM) IRRATABLE, IMAGINARY (NOT!!!)
I am going to do words for the whole word FIBROMYALGIA. I know there is a name for what I am doing but for the life of me cannot think of it. Anyone wanna let me know what it is????
Well today was an ok day for the most part. By that I mean my pain was about a 7 out of 10 for most of the day. Got up went to church, of course I was about 15 minutes late. I was so glad Jim went before me to do set-up. I had to sit for some of the songs, legs just did not like the pressure of standing. My arm hurt to even hold my bullitin. I made it through...
We went to lunch with the paster, his wife, Jaimie and some others from our church family. Wasn't that hungry, just not feeling mexican lately....sorry Jim! ;(
OK so this is not going to be as long as I want tonight, cannot keep my head up and my eyes have a mind of their own. It amazes me how my head can get so heavy so fast. I mean, if you were to say here is a million dollars if you can keep your head up and your eyes open, it is yours!! Well I would not getting that money....pure and utter fatique. Thank goodness for spell check because I am so messing up words and falling asleep with my finger on a key....
Anyway, after lunch we came home and proceeded to work on the dryer which is not drying!! Jim decided to pull the dryer out and snake the dryer vent.....guess what he came back with??? About a 14 inch high X 7 inch wide pile of lint!! He kept moving the snake around and it just kept coming. He checked this because my dryer has been blowing lint back out from the back too. (make sense) Soooo to make a long story even longer, the dryer is all put back and I will be testing it out tonight but we don't think it is going to dry?? It also wasn't heating very well earlier. I am going to be calling someone to come out and look at....more money we don't have! :(
I am also calling the people that did our new roof to come out and make sure they didn't block the vent on our roof. Plus I have found several roofing nails on our back deck and a piece of shingle in a tree. The roof was done a couple of months ago at least. Please pray everything is ok!!!
So anyway, I was busy helping him, didn't get to lay down like my body was saying to do....didn't get around to taking my meds until 2 hours to late. I was ready to scream and bite someone's head off I hurt so bad. Remember earlier I said my pain was a 7 out of 10, well then it was about a 10 out of 100!!! I was so tired too!! We had a church dinner tonight to celebrate our 1 YEAR ANNIVERSAY..THE KIRK!!! I really didn't want to miss this but was actually thinking about staying home!! I hate always missing things!! I missed a New Years dinner because I hurt so bad and was so tired!! I go to the beach to visit my parents and never see any of my friends because I am so tired and hurt so bad. I will call them and make plans, then the last minute have to cancel..............
I also don't like scheduling things to do during the day until after 12:00. Some days, most days I have no life. I wake up and if lucky out of bed by 11:00. I shoot for 10 or earlier but my body says NO!! My legs, hips, feet , shoulders and neck also say NO!!! I have to fight against that word NO everyday 24/7!! I cannot let it win, I will NOT let it win!! I mean some days I so wish I had a job and then think.....what would I do if I fell alseep and mess up something? I can't remember didly squat!! I can't stand or sit for very long with out moving because I hurt! Now keep in mind even with the meds I take, I still hurt on a scale usually a 7 out of 10, can you imagine me if I didn't have pain pills to take???
OK I am gonna stop rambling now and go to bed...really not feeling to well right now...stomach problems.
Sorry for any mispelled words, can't get my spell check to work...
I am going to do words for the whole word FIBROMYALGIA. I know there is a name for what I am doing but for the life of me cannot think of it. Anyone wanna let me know what it is????
Well today was an ok day for the most part. By that I mean my pain was about a 7 out of 10 for most of the day. Got up went to church, of course I was about 15 minutes late. I was so glad Jim went before me to do set-up. I had to sit for some of the songs, legs just did not like the pressure of standing. My arm hurt to even hold my bullitin. I made it through...
We went to lunch with the paster, his wife, Jaimie and some others from our church family. Wasn't that hungry, just not feeling mexican lately....sorry Jim! ;(
OK so this is not going to be as long as I want tonight, cannot keep my head up and my eyes have a mind of their own. It amazes me how my head can get so heavy so fast. I mean, if you were to say here is a million dollars if you can keep your head up and your eyes open, it is yours!! Well I would not getting that money....pure and utter fatique. Thank goodness for spell check because I am so messing up words and falling asleep with my finger on a key....
Anyway, after lunch we came home and proceeded to work on the dryer which is not drying!! Jim decided to pull the dryer out and snake the dryer vent.....guess what he came back with??? About a 14 inch high X 7 inch wide pile of lint!! He kept moving the snake around and it just kept coming. He checked this because my dryer has been blowing lint back out from the back too. (make sense) Soooo to make a long story even longer, the dryer is all put back and I will be testing it out tonight but we don't think it is going to dry?? It also wasn't heating very well earlier. I am going to be calling someone to come out and look at....more money we don't have! :(
I am also calling the people that did our new roof to come out and make sure they didn't block the vent on our roof. Plus I have found several roofing nails on our back deck and a piece of shingle in a tree. The roof was done a couple of months ago at least. Please pray everything is ok!!!
So anyway, I was busy helping him, didn't get to lay down like my body was saying to do....didn't get around to taking my meds until 2 hours to late. I was ready to scream and bite someone's head off I hurt so bad. Remember earlier I said my pain was a 7 out of 10, well then it was about a 10 out of 100!!! I was so tired too!! We had a church dinner tonight to celebrate our 1 YEAR ANNIVERSAY..THE KIRK!!! I really didn't want to miss this but was actually thinking about staying home!! I hate always missing things!! I missed a New Years dinner because I hurt so bad and was so tired!! I go to the beach to visit my parents and never see any of my friends because I am so tired and hurt so bad. I will call them and make plans, then the last minute have to cancel..............
I also don't like scheduling things to do during the day until after 12:00. Some days, most days I have no life. I wake up and if lucky out of bed by 11:00. I shoot for 10 or earlier but my body says NO!! My legs, hips, feet , shoulders and neck also say NO!!! I have to fight against that word NO everyday 24/7!! I cannot let it win, I will NOT let it win!! I mean some days I so wish I had a job and then think.....what would I do if I fell alseep and mess up something? I can't remember didly squat!! I can't stand or sit for very long with out moving because I hurt! Now keep in mind even with the meds I take, I still hurt on a scale usually a 7 out of 10, can you imagine me if I didn't have pain pills to take???
OK I am gonna stop rambling now and go to bed...really not feeling to well right now...stomach problems.
Sorry for any mispelled words, can't get my spell check to work...
Saturday, January 2, 2010
What you didn't know about fibro....
F IS FOR FATIGUE, FEAR, FRUSTRATION, FAT (you gain weight )
Jim and I went to his parents house last night for dinner and had a really good conversation afterwards. We talked about how people do not see me at my worst. How when I go to church on Sundays, I look all pulled together or when we go out for dinner I look like I am normal. I look like I am not in pain, or sooo tired, my eye sight becomes blurry. That I have to really focus on what anyone is saying because I either don't understand what you are saying or I forget what you said 2 minutes ago. Then my friends will laugh and give me a hard time, when what they don't understand is that it hurts but I don't show it!! They don't think it is fibro just me being me!! Well guess what it is the FIBRO!
I get so frustrated at my friends when they say we are non-committal. What they don't understand is that I can feel fine one minute and the next I am a goner. I can feel fine when we make plans but next week I can be in so much pain I want to scream, throw something or cry like a baby. My friends don't see any of this!! They don't see me when I am still in bed at 11:00am because I can't get out of bed. NOT that I don't want to but can't. AND PLEASE DON'T SAY JUST GET UP!!! You don't get it, my mind and my body are 2 different things!! If it was that easy, I WOULD GET UP!!! I lay there thinking of all the things I need to do and want to cry!! I want to work out because it will make me feel better but it is so hard to get going. The fatigue is so overwhelming!!! You think I like being the brunt of everyones jokes about how Lynn is late again?? I am just happy to be there but I have to smile or cry when you just don't get it!! I wish but then again I don't wish, my friends had to go from living their every days lives to have it come to a crashing holt and live my life for a week. Some could not do it!!!! The energy it takes me to do simple tasks...you don't get it, you think I am being lazy and enjoying not able to work!!
Yes, I enjoy being in debt out the a_s. Losing a beach house to foreclosure, spending all our savings trying to keep the beach house!! Praying every day that something doesn't go wrong because we don't have the money to pay for it!! I deal with so much guilt!!!
My pain is so ever whelming but you don't see it!! You don't see me when I want to cry just brushing my hair!! When I can't get dressed because putting on my clothes is so painful!!! When I can't bend over to put my shoes on because I have not been able to go to the bathroom. My stomach is so swollen it looks like a beach ball. I know I need to loose about 30 pounds at least. You think it is easy to take a medicine (Lyrica) that doesn't help with my weight but the pain relief is!! I am going to my doctor this week to see about swiching my meds....
You don't see what Jim has to go though with me....my anger, my frustration, me crying for no reason. Jim has to "put" up with this and it is so stressful on him!! He has been so patient and it is so hard on him. His wife went from being a very energetic person who loved to have a good time to someone that is the exact opposite. Jim is a person who likes to go and go, be very sociable, spend time with our friends and because of me he doesn't. I feel so bad.....this is not fair to him. You don't see me when I am at home..
People see me and think I am ok but they don't see the HELL I live everyday just to get by!!! Fibromyalgia is very real my friends!!!!!! I HURT LIKE YOU HAVE NEVER HURT BEFORE AND IT DOES NOT GO AWAY, I AM TIRED, I FALL ASLEEP AT THE DROP OF A HAT, MY ENERGY CAN GO FROM FULL SPEED TO A COMPLETE STOP IN LESS THAN 10 SECONDS, I HAVE NO MEMORY, I CANNOT CONCENTRATE, I CAN'T EVEN DRIVE TO THE BEACH BY MYSELF ANYMORE. MY EYE SIGHT IS SO BLURRY, I CANNOT STAND LOUD NOISES, I AM IRRITABLE ALOT, THERE IS SO MUCH MORE......I just can't think right now!!!
Please understand when you see me, I am in alot of pain and it is real!!!
Jim and I went to his parents house last night for dinner and had a really good conversation afterwards. We talked about how people do not see me at my worst. How when I go to church on Sundays, I look all pulled together or when we go out for dinner I look like I am normal. I look like I am not in pain, or sooo tired, my eye sight becomes blurry. That I have to really focus on what anyone is saying because I either don't understand what you are saying or I forget what you said 2 minutes ago. Then my friends will laugh and give me a hard time, when what they don't understand is that it hurts but I don't show it!! They don't think it is fibro just me being me!! Well guess what it is the FIBRO!
I get so frustrated at my friends when they say we are non-committal. What they don't understand is that I can feel fine one minute and the next I am a goner. I can feel fine when we make plans but next week I can be in so much pain I want to scream, throw something or cry like a baby. My friends don't see any of this!! They don't see me when I am still in bed at 11:00am because I can't get out of bed. NOT that I don't want to but can't. AND PLEASE DON'T SAY JUST GET UP!!! You don't get it, my mind and my body are 2 different things!! If it was that easy, I WOULD GET UP!!! I lay there thinking of all the things I need to do and want to cry!! I want to work out because it will make me feel better but it is so hard to get going. The fatigue is so overwhelming!!! You think I like being the brunt of everyones jokes about how Lynn is late again?? I am just happy to be there but I have to smile or cry when you just don't get it!! I wish but then again I don't wish, my friends had to go from living their every days lives to have it come to a crashing holt and live my life for a week. Some could not do it!!!! The energy it takes me to do simple tasks...you don't get it, you think I am being lazy and enjoying not able to work!!
Yes, I enjoy being in debt out the a_s. Losing a beach house to foreclosure, spending all our savings trying to keep the beach house!! Praying every day that something doesn't go wrong because we don't have the money to pay for it!! I deal with so much guilt!!!
My pain is so ever whelming but you don't see it!! You don't see me when I want to cry just brushing my hair!! When I can't get dressed because putting on my clothes is so painful!!! When I can't bend over to put my shoes on because I have not been able to go to the bathroom. My stomach is so swollen it looks like a beach ball. I know I need to loose about 30 pounds at least. You think it is easy to take a medicine (Lyrica) that doesn't help with my weight but the pain relief is!! I am going to my doctor this week to see about swiching my meds....
You don't see what Jim has to go though with me....my anger, my frustration, me crying for no reason. Jim has to "put" up with this and it is so stressful on him!! He has been so patient and it is so hard on him. His wife went from being a very energetic person who loved to have a good time to someone that is the exact opposite. Jim is a person who likes to go and go, be very sociable, spend time with our friends and because of me he doesn't. I feel so bad.....this is not fair to him. You don't see me when I am at home..
People see me and think I am ok but they don't see the HELL I live everyday just to get by!!! Fibromyalgia is very real my friends!!!!!! I HURT LIKE YOU HAVE NEVER HURT BEFORE AND IT DOES NOT GO AWAY, I AM TIRED, I FALL ASLEEP AT THE DROP OF A HAT, MY ENERGY CAN GO FROM FULL SPEED TO A COMPLETE STOP IN LESS THAN 10 SECONDS, I HAVE NO MEMORY, I CANNOT CONCENTRATE, I CAN'T EVEN DRIVE TO THE BEACH BY MYSELF ANYMORE. MY EYE SIGHT IS SO BLURRY, I CANNOT STAND LOUD NOISES, I AM IRRITABLE ALOT, THERE IS SO MUCH MORE......I just can't think right now!!!
Please understand when you see me, I am in alot of pain and it is real!!!
Friday, January 1, 2010
We watched The Hangover and it was very funny!!!! It is such a guy movie!!! It was great to listen to Jim laugh...:)
Kyle and Amber made it back in time to bring the new year in with us. We each had a sip of champagne for our toast. 2010 is going to be great!! I got to speak to my baby girl at midnight, I love her so much and am so blessed to have had her. Alexx you have grown into such a beautiful young lady.....I AM SO PROUD OF YOU!!!
I however was VERY sad last night, I called my parents at midnight to wish them a Happy New Year and no answer...bummer, that is the first time in 46 years I have not spoken to them at midnight!!! I even called my dads cell phone of course what was I thinking to do that....he never carries it or turns it on. Gotta get him to do that!! Hey, that could be his new years resolution...haha!
I am laying here listening to my hubby snore and love the fact he is sleeping in....I on the other hand was woken by my dog as usual. I an the official feeder and walker!!!! She always comes to my side and gets in my face. I grumble alot about how I hate morning and slowly get out of bed. Say OUCH with every step I take down the stairs, say OUCH as I am pulling the backdoor open, OUCH as I bend down to feed her, then give my cat kisses and get some head butts while I feed him. I then get me some juice and take my morning dose of pills, then I crawl back up the stairs saying OUCH or CRAP with every step. Look to the bed and Maggie has already beaten me there...o no you don't!!! That is my spot. She is used to Jim being gone in the mornings. I get her to the bottom of the bed, kinda. Crawl back in and say AAAHHHHH! I cannot wait for my meds to kick in, My feet are in so much pain just laying here, not even moving them! My hips are killing me and my neck and shoulders feel like they could just snap off! Now my cat is up on the bed, crawls onto my chest and I type at an awkward angle because I cannot move him, right?? Finally he moves and is now laying between Jim's legs. All 4 of us on the bed....I am happy at this moment :)
HAPPY NEW YEARS TO ALL MY FRIENDS AND FAMILY.....THIS IS GOING TO BE A BLESSED YEAR!!!!!!!!!!!!
Kyle and Amber made it back in time to bring the new year in with us. We each had a sip of champagne for our toast. 2010 is going to be great!! I got to speak to my baby girl at midnight, I love her so much and am so blessed to have had her. Alexx you have grown into such a beautiful young lady.....I AM SO PROUD OF YOU!!!
I however was VERY sad last night, I called my parents at midnight to wish them a Happy New Year and no answer...bummer, that is the first time in 46 years I have not spoken to them at midnight!!! I even called my dads cell phone of course what was I thinking to do that....he never carries it or turns it on. Gotta get him to do that!! Hey, that could be his new years resolution...haha!
I am laying here listening to my hubby snore and love the fact he is sleeping in....I on the other hand was woken by my dog as usual. I an the official feeder and walker!!!! She always comes to my side and gets in my face. I grumble alot about how I hate morning and slowly get out of bed. Say OUCH with every step I take down the stairs, say OUCH as I am pulling the backdoor open, OUCH as I bend down to feed her, then give my cat kisses and get some head butts while I feed him. I then get me some juice and take my morning dose of pills, then I crawl back up the stairs saying OUCH or CRAP with every step. Look to the bed and Maggie has already beaten me there...o no you don't!!! That is my spot. She is used to Jim being gone in the mornings. I get her to the bottom of the bed, kinda. Crawl back in and say AAAHHHHH! I cannot wait for my meds to kick in, My feet are in so much pain just laying here, not even moving them! My hips are killing me and my neck and shoulders feel like they could just snap off! Now my cat is up on the bed, crawls onto my chest and I type at an awkward angle because I cannot move him, right?? Finally he moves and is now laying between Jim's legs. All 4 of us on the bed....I am happy at this moment :)
HAPPY NEW YEARS TO ALL MY FRIENDS AND FAMILY.....THIS IS GOING TO BE A BLESSED YEAR!!!!!!!!!!!!
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