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.
Wednesday, March 31, 2010
Beautiful Day
By the way, in case you ever wondered, it is very very hard to type when you are laying on the couch and your cat (who is not small by any means) decides to lay on your chest and sleep. I know I could move him but what kind of cat lover would I be??? I am laying here typing with one hand...his whole body is covering my chest and his head is up under my neck!!! I guess you just need to see it....haha :)
Found an orthopedic doctor that I like today, Dr. Kramer. He actually seemed to care and he listened. I have to tell you how I found him....thru the kindness of a stranger. Yesterday a lady saw how much pain I was in and recommended him. I am glad I listened to her, THANK YOU my stranger friend!!!! Anyway, xrays were taken and everything there looked good. Going to have 2 MRI's done next week. Wants to see what is going on since the pain has been with me for over 12 plus years???? Starting physical therapy next week and a dose of steroids. Never understood how steroids worked to help pain????
I just know that the pain on Sunday was unbearable and my husband was awesome!!!!
I actually got to prune my roses today...looking for something to put down with them. Hosta??Just to cover the empty spaces. I think I will google ideas....any suggestions????? I am so frustrated that I have not been able to dig holes and plant my plants yet.....Jim dug a few holes for me tonight so I got a few in....I know what I am doing tomorrow!!! I wish I had about 1000.00 and I would be set, just want to fill everything in!!! I can visualize it in my head, just wish I could get it the way I want it....does that make sense???
On HGTV they have a couple shows where the come and do peoples yards, why can't they come do mine????
10 pounds.....I have lost 10 pounds!!! That is something I didn't think I would ever be able to say!! Only 20 more to go....I really really want to be able to wear the pair of low rise, button fly jeans I wore when I met Jim...Yes, I still have them hanging in my closet......
At the end of July I am going to a mini reunion at the beach with some friends that I have not seen since 1976.....wanna at least feel 1/2 good about myself. That way, if my pain level is bad I will hopefully at least look ok...:)
This weekend is going to be in the 80's!!!! I cannot wait...I am hoping to at least be able to lay out in the backyard for a couple hours with a book and catch some sun....If I ask real nice, maybe Jim will let me ride on the bike a little with him too. I love how it relaxes him and how sexy he looks on it too!!!! Yummy!!!!
It is going to be a great weekend and a happy one.....beautiful sky's...sunny sky's.....sun does my body good!! No humidity....I love it!!
Monday, March 29, 2010
emergency room
So after many hours of this I finally asked Jim to take me, I just couldn't do it any more. Talk about a let down!! I thought going to the emergency room, was supposed to help you not make you feel worse!!! First the funny part....I received my Medicaid Part A card Friday ( for hospital) so was relieved that we had that to use. Gave the person all my info, insurance card, medicaid card and before he walked back to us I looked at Jim and said well poo, I don't think my medicaid starts until April 1.....then the guy comes walking around the corner with this look on his face and I knew what he was going to say.....I was right!!!! APRIL 1!!!!
I had put off going to the emergency room because I knew it would cost money we didn't have or need to spend but I new with the medicaid card it would be better, that is why I decided to finally go then.....of course, APRIL 1st!!!
They gave me a morphine shot in my hip which really didn't help. I left there in almost as much pain as I arrived. I never saw a doctor, just the PA, the doctor couldn't be bothered. All she did was poke at my back, ( which I about came out of my chair and smacked her) no xrays nothing!!! Just told to go home and continue with my pain meds that I have and to call my pain doctor to make an appointment.....I was and am so pissed off!!!! They didn't even come close to meeting their mission statement!!! Did I call and complain, YES I DID!!! Will it do any good, probably not. I am sure the PA that I had last night will take care of someone else tonight and all I can say is that I pray they get better care than I did!!!
Part of yesterday was a bluer to me but I do remember how wonderful my husband was and how wonderful his strong arms felt when he was holding me up. I felt so secure and safe and free of pain when he had me....
Today has been a day of doing much of nothing and it has sucked!!! I am so tired of doing nothing....first fibro and now this...come on now!!!! I was able to make it to my bladder treatment. I had so many people looking at me. The way I was walking and standing. I was shuffling across the parking lot and had to stop mid step. The pain was so intense I couldn't move and didn't know what to do...but I was going to do it!!!
I need to make an appointment for my back, just trying to figure out which doctor to call. My general doctor which I would go to for a referral or my fibro doctor which would take forever to get into????
Sunday, March 28, 2010
An alcoholic I will not be!!
Last night we went over to our friends house and I found a new wine that I really like. Of course I can't remember what it is called right now but I will post later....anyway, I have pretty much taken to not drinking because of the meds I take and I don't really want to risk feeling like crud! So what did I do last night, drank 3 glasses of wine!!!! The first real alcohol in forever....and after glass 3 I wanted to die!!! We came home, Jim helped me into bed, put the trashcan beside me. (didn't need it but I wish I had) So, I am sticking to one glass and being DD!!
To top it all of I threw my back out yesterday. For about the last 15/18 years it has been happening. It is like it gets stuck, I will be walking and all of a sudden it will stop me in my tracks. A pain so sharp it takes my breath away. So for the next couple of days, I will walk funny and bend funny. I have some muscle relaxers but I REALLY DON'T WANT TO TAKE MORE PILLS!!!! I might have gotten 3/4 hours sleep last night because I just couldn't get comfortable or would wake every time I moved. I feel so bad because I kept Jim awake too..:( I am laying here and it hurts so freaking bad.....come on, give me a break!!! Isn't fibro pain, enough????
Week 1 down of my bladder treatments 2 more to go......
Tuesday, March 23, 2010
am I a weak person?
I am asking this because I have had several people lately tell me about people they know that have fibro and are having to just tough it out and keep working. They have no choice but to keep going. What does that make me? I wonder if they have CFS, IC, IBS as well? I know without a shadow of doubt that for the first two and a half years that I had fibro/CFS I could not have worked one single day! If I did not have my wonderful husband I would either be on the streets, living with my parents or God only knows where because I know I could not have worked. I fought day in day out trying to survive! My heart goes out to single people that have families to support..how do they do it?? I mean I don't know how to put into words how hard it was for me to do the daily living functions.....there were many days I didn't take a shower, nights I couldn't cook, I hardly cleaned my house, if at all!!So what do people think of me? I would have given anything to have been able to live my life...to have been able to fight my way to work everyday. In fact I did do that about the last 6 months at my job before I lost it and just walked out one day. I just couldn't do it anymore!! I was having a breakdown from trying to do it! I was soooo tired and hurt so bad!!!
Again I say I used to be a very strong person!!! So what does that make me now?? I know I am very blessed in ways that others with fibro are not. I have a wonderful husband.....who has put up with so much from me!! Because of me not working, I have put us into a financial ruin/disaster. So why didn't I force myself to work, why did I allow this to happen? I swear if I could have worked I would have....I am a proud person, I have always worked hard and taken care of what I had, this is not something I just thought O goodie I don't have to work now!!! I have spent more hours laying around doing nothing because my body just will not move!! I have had more conversations with myself praying for energy!!! The pain is unbearable most days but not having the energy to move is worse!!
I was at a friends house and was talking about being at the beach and they called it a vacation and I said it was not a vacation, I was spending time with my daughter and family during her spring break. Just need some revamp time....went down with a very bad cold, a flare and the weather was yucky!!! Anyway, my friends said it was a vacation because I wasn't working her 60 hour work week. Would I want to switch with her?? Why, yes would love to!!!! My friends or people in general think that because they see me doing stuff that I am fine and why am I not working....sucking it up!! I wake up and never know from day to day how I am going to be! Today I woke up and my feet and legs are hurting about an 8 on a scale of 1-10. I am typing this with my eyes 1/2 closed trying to stay awake. Every step I take I feel like I have 40 pound weights tied to my legs!! But, should I suck it up and force my self to work and mentally go insane trying to do it??? What does that make me because I am not able to do???? I DIDN'T ASK FOR MY LIFE TO BE THIS WAY......I AM A STRONG PERSON!!!
So I guess when people want to think bad about me and want to tell me about people that have fibro and suck it up and work and are looking at me like...why don't you??? Try living a month in my shoes!!!!
The past couple of weeks have been better for me. What I mean by that is.....I am able to get out of bed before 10:00 some days. getting going is another thing though!
It is so sad when the thought of taking a shower just wears me out.....I look at all my friends wearing makeup and have tried wearing it a couple of times this past month......it only took me about an hour and a half to do my makeup and hair....i would get so tired and have to stop. That is sooooo sad!!!!
The warm sunny days do help too.
OK I am tired of rambling........I am going to get my lazy butt up and get going!!!!!!!!!!!
Monday, March 22, 2010
where to begin?
Love my daughter more than I thought possible! I found myself watching her and thinking she is so much like me.....should I be scared?
My parents are so awesome!!!! Played Putt Putt with my dad, Alexx, Ulianna and Eddie (sister in law and nephew) the weather was kinda overcast and a little chilly! Had a great time!!! Didn't really keep score just had fun....and Eddie was very well behaved!!! 3 years old...:)
Friday was the first beautiful day and got to go to the beach for a little over an hour. Could have stayed for a couple more it was that nice....that's ok though, I know I will be going back!!!
I was laying on a towel and my dad layed down beside me and we just had a chat.....it was the best!! No stress....perfect time at the beach :)
In case you can't tell from reading my blog, I love my parents!!
Before I left for the beach I was feeling like crap! I almost didn't go I felt that bad...I think it was the flu???? The week before I had some pretty fantastic days and way way over did it!!! The weather had been beautiful so I was out doing yard work....so imagine having a huge flare up with the flu on top of it. Not fun!! We were supposed to leave Friday after Jim got off work, I just couldn't do it. Saturday morning we were going to leave bright and early but didn't get out until after 1ish. I COULDN'T get out of bed!! As the rest of the story goes....we made it to the beach!!!
Jim and I met Alexx's boyfriend, McKinley. Very nice young man. I love to see her happy....
This is going to be a very busy week just getting back into the swing of things.....I am going to do my best to not over do it!!!! Even when it comes to yard work...:) Thanks to my wonderful husband for the first yard mow of the year. Planting flowers and weeding is not hard work in my book....it is therapy!!!!
So gotta go get started on my week....will blog later....by the way....this morning my pain level is about a 6 and my energy level is a 6 and my stomach is a 40, my mental is, well I am still working on that! haha
Thursday, March 18, 2010
Very Long Week......
Jim drove me to the beach this past Saturday and left me with no car....:( he didn't really leave me, I just feel totally left and abandoned because I am having to rely on my daughter to get anywhere. Which means she has had to spend every moment of her spring break with me. Let me back up here a minute.....we were down to one car in our family on Saturday so Jim had to bring me down.....Even if we had 2 cars, Jim is not crazy about me driving far distances because I have a tendency to fall asleep while driving. Which is soooo funny because I used to drive all the time as a district manager. I get nervous too....I have just learned to pull over and run around the car a couple of times or stop and take a nap. There have been a few times when I have been so thankful to be home, the drive takes everything out of me. Again, keep in mind when Jim and I were dating, it was nothing for me to hop in the car and drive the 4 hours to see him...There are times at home just driving around town if I am having a bad day or even a good day I can nod off when driving. Have I said how much I hate CFS??? Well I do!!!!!!!
When I came to the beach, I had a very bad cold which didn't help matters. Sunday and Monday were totally wasted days! Tuesday, Alexx and I got out the house and I rode with her while she did some job hunting. Then we went and rented some movies and where in for the night. Back to Monday we did nothing really during the day but did watch some movies. Wednesday we met my dad, sister in law and nephew at Chick Fil A for a kids night thingy then we went back to Pawleys and watched a movie. Today we cleaned up the place in Pawleys and about 3ish we headed to meet my dad, sister in law and nephew to play putt putt. The weather was kinda cloudy, a little chilly just perfect to play. It was nice to actually do something outside this week. I have felt so bad for my daughter....she has gotten to see what little energy her mom has!! I was sooo hoping that my daughter would get some good days out of me...I am not much fun to be around. I am sure she will be fine with me not coming down and her having to stay with me anytime soon. She doesn't really relax around me....I see how tense she is!!! We used to have so much fun...laughing and just being happy. It breaks my heart what I feel I have done to our relationship but yet have had no control over!! I hope that makes sense to someone????? My daughter has seen me cry more this week than all the years she has been alive, that is just not right!!!!
My daughter and I were having lunch today and to have her start crying telling me that I am not how I used to be. I used to laugh and smile. She never knows how I am going to be.....she was not being ugly by any means. We were having a very good conversation and it killed me to hear her say that!!! I am so different......to her!! The truth is, I am so very different!!! I am so much more a loner. I don't like loud noises, bright lights, I don't talk that much....I would say it is safe to say I am a compete 360 of who I used to be! And I HATE IT!!!!!!!!!!!!!
One really bad part of this week has been.....I FORGOT SOME OF MY MEDS!!!!!!!!! I went to CVS and got enough to last me until Wednesday night. I was supposed to go home on Thursday but was having problems getting home!! Have I said I will never be without a car at the beach again??? I will not!! Anyway, since I had already gotten some I could not get anymore...:( My nights and mornings have not been the greatest!
I have wanted to go home so many times this past week just so I could be alone! At home during the day I would say about 90% of the time I am alone...something I have gotten used to. I don't have to worry about anyone seeing me at my worst, seeing me cry when I am sad, seeing me when I don't have the energy to move or hurt to bad to move. I don't have to answer to anyone...so I guess being alone is a good thing for me! Something I have gotten used too! This week being with my daughter 24/7 I have had to work hard on not being alone......don't get me wrong I treasure EVERY second with Alexx!!!! This week has just really reminded how much I HATE being sick!!!! What it has done to my life and how it not only affects me but those I love!!
Tomorrow is my last day here....I am praying for a great one!!!!!! I would love to spend about an hour just laying on the beach reading....keep your fingers crossed XXXXXXXXXX
I am spending tonight and tomorrow night at my parents house which is good.....I love spending time with them!!! I am so blessed in the parent department!!!!!
Sweet dreams to those that are able to sleep..........
Wednesday, March 17, 2010
Spring Break
I have been fighting my bladder pain for the past couple of months and have decided that it is a battle I am not going to win. When I get back home, will be making an appointment. I was hoping my IC would not come back but that is not to be the case More milk treatments....yeaha!!! For people that do not know what IC is, please read up on it!!! It is not fun and very very painful...it was the beginning of my life changing journey....
Don't get me wrong, I am loving being with my daughter! Just wish I could go and go with her....:)We have had fun watching movies and eating though......:)
Just wanted to stop in and say hi, will write more when I get home...
Thursday, March 11, 2010
Weather????
This past week has been beautiful, warm and sunny and my body felt pretty good. Yesterday it started getting cloudy and I could tell a difference as soon as I saw the first cloud....
this morning with the rain, I am back to feeling bad. Right now I am laying here trying to figure out if I am getting a shingles out break on my other arm....
Good night....
Tuesday, March 9, 2010
Been awhile
The past couple of days have actually been pretty good for me. Except for my stomach....my IBS is killing me! I have lost about 7 pounds (according to my scales) but looking at my stomach, I still look very much pregnant. The pressure is so painful.....oops, I am falling asleep here :) my body seems to be going into coma mode.
Went to the doctors today and hopefully will be able to get some shots on Friday in my hips...that should help with the pain at least for a couple of days. I am trying some pain patches on my hips, can't wait to see if they work???
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That was from Tuesday, now it is Wednesday. It was way to pretty out side yesterday to be inside so I stopped typing and went outside right away. :) In our back yard we have this hill so to speak that has needed to be cleaned up for since we moved into the house 5 years ago. We started it this past Sunday, YEA!!!! Jim really helped me get alot done and now I am able to manage it. I needed his help with the big stuff. Kyle wants to run the other way because all he sees is all the bagging he is going to be doing. He swears he will never own a house with a yard just so he doesn't have to do yard work...lol!!
It is going to be slow going but it will get done now. There are more big rocks up there than I knew, they were just covered up in all the growth. It is going to look so nice once I am done with it, I hope. I am not to proud to say I am taking donations of any "plant clippings" or "transplants" anyone wants to donate. I am hoping to get some hosta from some friends for the side of my house. I am going to the beach this week and am going to be working with my mom on flower and bush ideas????? We have really cleaned ALOT away from the top. I am paying for it now but I love looking at it. My vegetable beds are clean and ready for planting too.
Grass seed is going to be a big purchase for us in the very near future with fertilizer. I don't think we have ever had good grass...haha!!
I am so thankful that the past few days, the weather has been sunny and warm it really does makes a huge difference in the way I feel. Of course the down side of that is I have now over done it and am laying here with no energy, sore throat, scratchy cough, shingles break out on my arm , I think it is starting on my back too. Just plain feel like crap!!!
Have I said what an awesome husband I have lately? I know everyone gets sick of hearing about it but Jim really is an awesome man!! Yes, there are days he drives me nuts, days that I want to not even be around him but I will always love him! He is MY soul mate! My life is not complete without him! Jim has such a way of calming me down, letting me know that all will be ok and that GOD is in control. We have to do our part and we will!!! We have each other!!!!!!
I have been having so many down days......I am trying very hard to have no crying days!! I am down to my last pair of contacts so I can't keep crying!!! I used to be a very happy person, full of energy. Over the past couple of years I have fought daily to smile and laugh! Going from a strong type A person with extreme energy to the complete opposite really takes a toll on a person. I used to be a person that loved working, it was such a part of who I was..... These past weeks have been so very dark for me...I have been very scared, I have scared Jim! This disease/illness has totally changed who I am but I can still be happy!!! I am working very hard on getting there again. It is a very hard road to walk......I am not blogging like I used to because I just don't feel like talking about it! But then again I do because it is a way for me to vent...kinda sick and twisted I know..haha
I have not given up blogging, just taking a few days off here and there....have alot going on that Jim and I have to take care of. Our energy is focused on getting our life back on track and where it needs to be....not sure what that direction will be right now?? There are going to be some major changes but we are ready for what ever comes our way, we are going to do our part and the rest is going to be in Gods hands...he has all the plans!
Does anyone have a super duper golf umbrella i can have?? Jim and I have decided that we must have the largest black storm cloud over us ever!!!! THINGS WILL TURN AROUND AND WE HAVE EACH OTHER!!!!!!!!!!!!!!!!!!!!
Have a blessed day and remember that GOD IS GOOD!!!