Wednesday, May 26, 2010

I am laying here and all I can do is cry and blog right now. I am so mad I can't stand it right now!!! My mom and dad need me and I can't drive to the beach right now! My body won't let me!! My mom is not doing well...it has been 2 weeks since her surgery and she is going backwards now forwards in getting better. I was really scared talking to her on the phone yesterday. She would be talking about stuff that made no sense and then stop talking and I would be yelling to her and she would not answer me...then come back and be making no sense again. This also happened when my dad was at the hosp and it scared him too. He is worried about my mom.
I plan on leaving to go back today to speak with the doctors and find out what is going on...BUT, my dad called me this morning first thing and I heard it in his voice, he is scared. My mom woke up dizzy and her speech is back to like it was yesterday. Something is not right!!!!! I want to leave NOW and I CAN'T!!! MY BODY WON'T LET ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I hurt and I can't get out of bed!!! I need the strength to drive 4 hours and be there for my mom and dad!!!!!! I am so mad............I am also being sad and selfish because there is really no one I can call and talk to about how I am feeling right now...I don't want to bother anyone!!! I called Jim and he is wonderful but he is at work and I don't need to be bothering him....I so love him!!!!
I hate, hate having fibro!!!!!! I want to get up and go right now.......God, please give me strength!!!!

Tuesday, May 25, 2010

the esland

People think I am kidding when I say I want to sale everything and move to the beach somewhere with Jim. It has to be a beach in the Caribbean though or the keys....somewhere where it is sunny and warm year round!!!

Right now it is cloudy and dreary outside and I am inside feeling like crap!! I didn't sleep well last night and I have not slept well in about a week. I have no energy, my stomach is hurting for the first time in weeks, and I hurt!!! I have a headache...so what am I going to do???? I am going to make myself get up! Somehow....if I can quit falling asleep :(

You can't tell me I am not strong......try living in my shoes for a month!! Try getting out of bed and living my life when when you don't want to get up....that takes real strength!!!!!

Monday, May 24, 2010

stressful couple weeks

Anyone that knows anything about fibro knows that stress plays a huge part in how we feel. Well I think I have handled the past week and a half pretty darn well. My mother had hip replacement surgery and I have spent almost a week in Charleston helping my dad and then came back home for a couple days then drove to the beach to help my dad and be with my mom also. Right now my mom is in rehab and working on gaining her strength back. She has had some intestinal problems and that has really caused her some problems. I am going back again this week because I have some other concerns that I am talking to the head nurse about and want to have a conversation with her doctor. They are trying to tell me that it is because she is in the hosp, recovery, blah, blah....I know my mom and I know there is something different. Until I am satisfied with the answers I get, I will not let it drop. I want my mom to be as good as new!!

My body has has been fighting against me the whole time and I won't give in. At least I am trying my best. My legs have been hurting more than usual and my hips are starting to worry me. They wake me up at night when ever I role over on them. It used to be just the right one and now it is both. I am going to see about getting cortisone shots......Just touching them makes me scream....I can't get comfortable when I am sitting for any length of time. I am always moving. My leg pain on a scale of 1 - 10 right now is about a 14 and my hips are about a 15. I am laying here and the slightest move shoots pain!!!!

I have been trying to get into see a skin doctor for over 3 months now....my arms have got what looks like acne all over it...it is not your typical bumps you see on the tops of peoples arms. It started out as just a few and now it is all over my arms, tops and bottoms, all around!! It is now spreading to my chest some....my appointment is not until July but I keep calling to see if they have any cancellations. When I go to the beach this week I am going to try and get into the skin doctor my daughter has been to. I have got to get someone to look at this!!!! I hate for anyone to touch my skin, it is gross and very ugly!!! My skin feels like a brillo pad!!!! I have switched soaps trying to see if that is what it is...??????

Time for bed, can't keep my eyes open...:)

Tuesday, May 18, 2010

update

Since my post yesterday I have spoken to my dad and I will be going to the beach to help with my mom. She really doesn't need my help with much but I want to be there to support her and my dad. I want to make sure my dad is taking care of himself...:) I am going to do some cleaning and make sure all her plants are watered! I have promised everyone that I will take my time getting there and that if I can't do it, I won't!!!

The rehab place that my mom is staying at is very nice and my mom likes it there...very sunny and open...

I have also promised that I will not work so much that I pay for it when I get home! I know my limitations...I know my dad worries about my health and for that I love him even more, if that is even possible!!

I hate having fibro!!!! Before I got sick I could have gone home at anytime, cleaned the entire house from top to bottom and still gone out to dinner with friends. Now I have to pray that when I wake up I can move! I hate that the disease rules my life!!! And has robbed me of so much....yet in a strange way it has given me so much.

Please keep me in your prayers....I want to be able to do so much for my parents, they are the best :) and I love them!

Monday, May 17, 2010

why i hate fibro

Today I discovered another reason I hate having fibro, it stops me from seeing my family at a moments notice! My mother had surgery last Wednesday and Jim and I went down to Charleston to be with her and my dad. I stayed with her until Sunday. Jim came up on Friday night about midnight and then we left on Sunday. My mother is as beautiful as ever. At first I was really worried if I may be honest about my mom, scared really! It took awhile for the anthistesia(sp) to wear off and it was causing my mom to be a little "out of her head" when it came to talking to her. I don't mean that in a bad way!!!!!! She kept nodding off and on and not making any sense when she talked.
When Jim and I left on Sunday it was harder than I thought it would be....I hated to leave my mom. I want to be there to help take care of her and I am really not needed, he has enough help. At least that is what my dad says!!!! Those words hurt more than my dad realizes..

My mom was moved today to a rehab hosp much closer to their home. Instead of being 2 hours away, she is now only 20 minutes from home. I am so happy for both of my parents. At the same time I am feeling completely hurt and unwanted!! To be honest again my dad has my sister in law living at the house with my 4 year old nephew (while my brother is over sea's...non military) and he tells me she can handle everything!! That really sucks to hear..but I won't even go into that on here!!!

This really isn't about my fibro but I needed to vent.....of course the stress is doing wonders for me..:)

Jim is going to Texas on Wednesday and I had actually convinced him that I would be ok driving to the beach by myself to spend the weekend with my dad to help with the house....was told that there is no need for me to be there!! Sometimes just being there is all I want!!! I want to feel like I am being helpful. My parents have always been there for me...I like to help them where I can. Like I said even if it is getting lunch for my mom, washing clothes, bringing her flowers or just making her smile..:) I know I could do this!!!!! Since getting sick just getting up and going is not very easy for me in fact it is darn right scary and very tiring but this I wanted to do!! I felt like I could be a big help even though I am limited in what all I can do. I was excited about BEING able to do this or at least willing to try!! It might have taken me an hour or so longer to get there but I was going to this! I WAS NOT GOING TO LET MY SICKNESS/FIBRO STOP ME FROM BEING THERE TO HELP MY MOM!! Instead my dad told me he didn't need me there. There really wasn't anything for me to do.....I could find alot of things to do that would have made my mom very happy! CLEAN ROOMS, WORK IN THE GARDEN, WATER HER AFRICAN VIOLETS. I know how to clean...I have seen how other people clean, how they pick up....I know my mom would have loved what she came home to....

Can you tell I am hurt? But just as everything else.....O never mind!!!!!!!!!!

Friday, May 14, 2010

water

All I have to really say is drink lots of water.....it is so hard to keep a normal schedule when your mom is in the hospital and I have been trying but doing a lousy job of it! I am going to walk on the tread mill though as soon as I am done typing this!!

Eating right is such a huge deal for me and I have really been wanting to do just that but again being out of town, mom in the hospital, staying in a hotel it is harder than I thought. Why, STRESS is the #1 reason!!!! But my mom is doing ok and will be able to walk soon with no pain so it will be all worth it!! So what am I complaining about???

I just hate that I feel like crap!!!! But I am not saying anything to my parents, that is what I have my blog for....to vent!!! OOPS, except I know my dad will read this one day.....I love you daddy and would do anything in the world for you and mom!!!!

Well gotta go get ready, I want to see my mom....:)

DRINK WATER...

Tuesday, May 11, 2010

mornings

I waste so much of my day just trying to get going!! I wake up and feel worse than when I went to bed....my body feels as though it has been through the ringer!!! I am not being lazy!!! It is not just a matter of...get up, get going!!! I wish it was that easy!!!!
What really makes me mad and actually sick to my stomach is I have so much to do today!! I have to get going and I am still laying here. My body is a dead weight!!!!
People don't see this part of my life.....

When I get back from Charleston I am getting back to a early bedtime. I have been going to bed later and of course I am not sleeping well so the 2 together are not good for me. I wake several times a night either because my stomach is bothering me, my hips are hurting me, my shoulders are hurting or I am just awake....O the joys of fibro!!! Usually when Jim wakes in the morning I am awake enough to stay awake and talk to him. The past week I can't even lift my head when he gets up.....

OK so enough of that......I am setting a goal here to lose 9 pounds in a month!! I don't honestly think I will do it but I am going to try!!!!! I know how hard it will be and am willing to try!!!!! Wish me luck...:)
Just fell asleep for a few minutes....

It is raining, so much for walking outside today!! I have to go to the Y!!!! I have not been the best about that lately because...walking outside is much more fun!!! I am taking my hand weights with me to the hotel and my workout tape ...I have the best intentions!!!

I am going to try and take on my day...I am taking my laptop with me so I will be blogging while my mom is in the hospital. PLEASE INCLUDE MY MOM IN YOUR PRAYERS...AND MY DAD TOO!

Monday, May 10, 2010

What did I eat???

I am going to weigh less than my goal weight if my stomach problems continue like this....


For about a week or so my stomach has been feeling pretty good!!! Yea, I had almost forgot what that felt like!! I mean as far as my IBS goes, it has gotten a little better. I have really been increasing the amount of fiber I eat. Plus I am taking fiber tabs daily and using Miralax 2 times daily. (trust me, you can put this in water and you really cannot tell it is in there. ) I was putting it in juice but don't need/want the extra calories.



I am back to my stomach hurting and being all bloated!!! I have eaten something within the past week that is just killing me!! The bad part is, it could be something from several days ago and just catching up to me or something from today. But then that would mean it is several things because it has been hurting everyday for about a week. I do know that I am going to stop eating broccoli with a veggie dip, kraft barb q sauce....that is the only thing I can think of that has been really different. I did have maybe 2 bites of KFC fried chicken a week ago today. I just had to taste it but as soon as I started eating it I knew I would regret it!! But that was a week ago. I really think today is from the barb q sauce! I feel as though someone has taken a bike pump and "pumped" me up!! It is no fun and it hurts and it is going no where. I am so tired and really need to walk but so don't want to!! But I know I need to....it would probably help!!!

I find it interesting how my stomach is really bothering me and I am feeling like poopoo!! I am tired, my legs are hurting, my feet hurt....let's put it this way...I don't want to do yard work!!!

That should tell you how bad I am feeling. I love doing yard work, it is my way of distressing and I just love making things look pretty. I always want to do yard work, even if it is just sweeping off the sidewalk....not today though..

Jim and I got to watch a beautiful red cardinal take a bath yesterday while the sprinkler was on....it was GOD at work....we hated when it left...

Just tried eating supper and didn't eat very much because I just don't want to eat alot....I feel like I am about 7 months prego...it was really good though. Jim really liked it which makes me very happy!! He ate a whole plate.......The only good thing is that with me losing 16/17 pounds it helps me not feel as bad as I did with the bloating as I did when the weight was on me. Does that makes sense??? I really want to lose 9 more pounds before we go to Puerto Rico in June. My goal is to loose a total of 15 more pounds!! I know it is going to be hard but I really want to do it!!! What does help is having Jim's support..:)
I am going to be walking 3 miles in the morning, at least I hope I can and will be!!! That would be a great start to my day, help my stomach and get me going....Fibro can and does rule my days!!! I hate to make plans because I hate to brake them.

The past week my mornings have been so fibro mornings!! Waking up to every nerve in my body hurting...I hate to move!! It is like I wake up but it takes me about 2/3 hours to actually become functional. I had about 2 weeks that were pretty good and them BAM!! I HAVE THIS FOR THE REST OF MY LIFE, THERE IS NO CURE!! I WILL BE IN PAIN FOR THE REST OF MY LIFE....I MAY HAVE A FEW GOOD DAYS AND MANY BAD DAYS!! MY LIFE HAS BEEN CHANGED FOREVER...

Tonight my husband made a comment about how I don't like to have fun like I used too, another thing that fibro has taken from me. I don't like ice cold hands on me, my body really doesn't like cold..:( He really wasn't meaning to be ugly, he was playing around but it did hurt)

I am in alot of pain and have pretty much done much of nothing today...with all this said, please say a prayer for my mom. This Wednesday my mom is going into MUSC in Charleston SC for hip replacement surgery. My mother has a few medical problems and I know that everything will be ok but I still would like to know everyone is praying for her. Can never have to any angels....My wish is that my mom will have this surgery and be able to walk without pain!!
I complain about pain and how I am feeling and my mom hardly ever complains. I wish I could be more like her...my wish is for her to be pain free!!! I love my mom!!!!!

Ok I have rambled again and am now done....

Sunday, May 9, 2010

Happy Mothers Day

Happy Mothers Day to all my friends that are mothers!!!! It is one of the hardest if not hardest jobs ever and one of the most under rated jobs there is. When we are little we take our own mothers for granted and the when we grow up we wonder how did they ever do it all???



My own mother and I had some very very rocky years and I thank the good Lord above for how close we are now! I have learned so much from her and am so much like her it can be scary some days.....my mom loves to garden, I love to garden, my mom loves to craft, I love to craft! I mean for years growing up all I ever knew was fabric and fabric stores. My mom can sew just about anything if not she will figure it out. For goodness sake before I got sick I managed a JO-ANN Fabric and Craft store. Me, that is the last place I thought I would ever work! I knew nothing about fabric!!! Trust me I learned!! (they hired me because I can manage, 15 years as a district manager) What is really scary......I liked working there. I learned about crafts I had never heard of, fabric I loved and made a friend for life!! MaryEllen is a very special lady who saw me through some really bad days and is just a good friend!!

I understand my mom soooo much more now....I love you MOM!!!!



*************************************************************************************



This morning I woke up remembering that I have Fibro! I felt like the tv commercial say I should except it was alot worse. I had to make myself get out of bed and practically stumble down the stairs to get my meds and juice. I really wanted to go to church or I would have stayed in bed!! Anytime I want to go anywhere early in the day, I have to get up at least 2/3 hours early to take my meds. Then I hope they work enough for me to function. Like right now, took them this afternoon but am feeling like a vegetable and the only part of my body that I am moving is my fingers. Everything else just kinda wants to sit there!!! I feel like every nerve in my body is on fire and in pain. After church, Jim dropped me off and he took his mom to lunch. I stayed home and layed down...:)
Church service was great today....
I am skipping around here...
That is how my brain works anymore...I can't stand loud noises. I can't spell worth a darn. I used to be able to spell really well and now I would say that I have to check at least several words a day. It is so frustrating!!! Fibro is not only taking my body but my mind as well.....my speech the past several weeks has gotten alot worse. I am slurring really bad some days and can't get words out. It is so frustrating, My words run all over themselves......it actually worries me some days!!!

Tired.........

Anyway, waking up is no fun!! My body feels like it belongs to someone else...it was really frustrating at the beach with our friends, they see me and they think I am fine. Just because on the outside I look o.k.. I could walk around with this sour look on my face and show how much pain I am in but I am so tired of doing that. I just hate that some of my friends don't understand. I know I shouldn't let it bother me or care what other people think but I do. I am on disability and am not proud of it but I do know that I need it!!!!!! If I could work I would!! If I could have more than a couple good days in a row I would happily work!!! The weather is warmer so that is on my side right now and does help a little :) .....when the weather is cold, rainy, damp, humid forget it!!!!!!!!!!!!!!!!!! My body just wants to shut down!! I hurt so bad but am getting so good at not showing it to the outside world. Or it could be because I stopped going into the outside world so much....

Just felt like rambling....

I love my daughter and I thank GOD for allowing me the privalge of being her mom!!! I am so proud of her.....
Thanks to my hubby for making this a special day....

Tuesday, May 4, 2010

Good days vs Bad days

This past weekend was a pretty good weekend for me, YEA!! It was kinda sad though....It was our bike weekend and I didn't ride the bike down with my husband. This is the first year I did not ride down, me and my friend Melissa drove down a couple days early. That part was nice because I got to get a few extra days of sun and got to spend some one on one girl time. I can ride the bike for short distances but on anything over 30/45 minutes I fall asleep and I start to really hurt. This breaks my heart because this is one thing that Jim and I love to do together. Our first so called date was on the Harley....we have many happy memories on the bike!!!!

Jim and I have had some pretty tough financial times since this thing called fibromyalgia decided to take over my body. We have had to give up alot and several times he has said he would sale the Harley and I have ALWAYS said NO!! Being able to get on the bike and just ride, there is no way to explain what it does for the soul!! Plus my husband looks so freaking sexy on the bike and in his leathers!! :) Being able to ride the Harley is the best therapy!!! The feeling of the wind and the sun...being able to hold onto my husband. Having him reach down and rub my leg or just wrap his arm around my leg in a possessive way....I may not be able to ride long distances but I can still ride!!!!

I don't care what any doctors say....the weather does make a difference to a person with fibro!!! This past weekend the sun was shining and it was nice and warm, I was feeling pretty good. I woke up extra early ( 5ish) so I could take my meds and that way when everyone else was waking up I would be able to get around. The afternoons I would get tired and want to take a nap, a couple of days my neck, shoulders and feet hurt but I was able to get thru it! The really cool part is.......my IBS was not a problem!!!!! In fact my stomach was wonderful and I was very regular!!!!!! The best it has been in over a year!! ( of course since I have been back home, it is out of whack again)

Got home and the weather on Monday was cloudy and rainy. I felt like crap! I hurt, I wanted to stay in bed ALL day!! It took me all day to just the simplest things......

We need to retire to the beach :)