The best thing I ever did.

My daughter was talking in a women who are pregnant chat room, and told me about this one woman that has a web site all about fibromyalgia. I went to it, and I was amazed with all of the information that I found there. :o) It was the best thing I've done.   Obtaining Social Security Disability Benefits with Fibromyalgia   / /  /   / CFS & Fibromyalgia: Co-Cure Let's Work Together Page If you choose not to go to this page, thats up to you. You can ask for a 3 part package, which I did, and it came with so much information. I never knew most of the stuff about fibromyalgia, or where to even get it off the internet. I really suggest that all should go there and at least read it. :o) I received the 3 emails yesterday, and was very surprised at how it was layed out, and with so much information, and places to find things about fibromyalgia. :o) I now realize that there are so many more of us out there. It doesn't seem it at times. The sites are great! :o) I sent it to my Uncle in Indiana that has a neice that has fibro as well. He wrote me back and thanked me for all of the information. :o)

This morning, I again woke up with a pain in my neck and shoulder...along with other regular pain. Oh well. Thats my life. :o)

.............................

Again...this morning I'm still not feeling well. I wake up in pain all through the night. I've been sleeping in until 8:30 most mornings, trying to get the rest I've been missing when I wake up through the night. .......which then leaves me feeling sluggish. I'm up in arms with this one. I'm not feeling well, sluggish, and with pain. What a mix this is. :o) Oh well. Just another day in my life.

Not feeling well.

Today, I just feel a bit under the weather. :o( Blah! I think it's because of our weather here in Ohio. It sucks. One day it's in the 50's, and the next day it's below zero, and then snowing. Until next time.....

Another day.

Well this morning I woke up in a lot of pain. I would say it's a good 7 on my pain scale. I suppose this is a good idea of what my day is going to be like. I've been taking Advil Liquid Gels to help, along with my other meds. Oh well.

I am going to try my hardest to make this a good day no matter what.

Tests are done...YAY!

I went to the hospital yesturday to finish up the rest of my tests. I had to have a series of blood and urin tests, and a CT scan. The CT scan was to see why my arm and legs go numb. I didn't know that you could tell that through a CT scan. I'm hoping so. :o) Oh well...I made it through it all. :o) Now I just have to wait until my next appointment to see the results.

My physical therapist just left. My neck really hurts. She rubbed it, but it is still hurting. Well...I know she can't "cure" it for me. :o) But...I do feel a bit better now. She did tell me how much better I've been handling this, since she first meet me, which was August of last year. A month after I was diagnosed. I told her that I was greiving at the time we first meet. Now...I'm over it. I already know what I can and can't do. :o) Simple. Well...not at first, it wasn't...but now it is. I guess this is all for now. Later! :o)

Tests today.

I have to go for blood tests and a CT scan today. Oh yay!

Not much to talk about today.

Last night I crashed this computer, because it was running too slow. I didn't get to bed until late. I'm paying for it now. :o( My fault. It takes so long to install everything, or just enough, to get it back up and running all over again. And thats how I left it. I have a major headache now, and all kinds of pain. Besides this computer. :o)

I did it! :o)

I finally got 9 hours of sleep last night!!!! YAY!!!! :o) Thats a lot for me! :o)

Yesterday, my friend came over. It's been awhile since I've seen her. She's been stuck in her house as well for awhile, with sick kids. We had a nice time. :o) My husband was watching football, while her and my daughter and I were having fun just sitting there talking. :o)

This morning, so far, just my back and shoulders are hurting. My physical therapist comes today. That will help a lot. I'm worried about my daughter. She's showing more and more signs of having fibro. :o( And, she's 5 months pregnant. I've noticed it last summer. I pray she doesn't have it.

Well....I'm hoping that today will be at least a 6 for me on my pain scale. That would be good. To those that read this....if you happen to know or have any information about fibromyalgia, I'd love to hear from you. :o)

Couldn't sleep.

I got up at 1:30. :o( This is going to be a sucky day. I made vegetable soup for today's super. It smells good. I started it last night. Now I'm letting it simmer the rest of the night. I got up because of my left hip, and my right leg hurting so bad. My right arm was numb again as well. That hurts pretty bad too. I don't understand it. Does anyone else have problems with a leg or an arm just going numb on them as well, with no pins and needle feelings? I write in this journal so I, and others that read this, can get a little more educated on fibromyalgia. If I write about something that someone else has, I'd really like to hear from you. I feel that more information should be out there, for others like me can get more information on this disease. I'm sure I'm not the only one that feels this way. So...it would be nice if I got some feed back on anyone that has anything like I do, or, any information about fibromyalgia.

ssdd.

I've been bouncing back and forth between a 6 & 7 on my pain chart. My left hip just won't let up right now. I'm waiting patiently for it to give me some releif. It's just another silent pain. This morning, my right leg is starting in. Oh yay. :o(

We are getting more snow again. I would like it more if I could be out in it to play. But, I am actually getting very tired of the white stuff. It makes it harder for me to get out to make my appointments. No one seems to think to clear my car off, or to shovel my car out when it gets this way. Yes, I do have 2 appointments I need to get to this week. Oh well. It's all in a person that looks fine, day. 

Understands?

That was sweet to see that my daughter understands me. :o) I have a feeling that most of the people that do read this journal doesn't. But thats fine with me. I know how I feel, but it's hard to get it across in writting. Some seem to take what I write wrong, and others do understand me.

Yesterday, I was feeling like crap. I had no energy at all. My left hip was really hurting me pretty bad. It made it hard to do anything. Even sit and to lay down. So, that kind of threw everthing off on my body. Oh well.

We got dumped on again with more snow. Just what we needed here in Ohio. We got at least 5 more inches, and is expected to get at least 4-6 more! Geesh! Thats an Ohio winter for ya'. All messed up. :o) That sets me back on rescheduling my CT scan. I can't make it to the hospital for it. Thats life.

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

I was able to sleep in again this morning! YAY! :o) I was able to get 8 and a half hours of sleep! It's been so long since I've been able to do that! It helps my body feel better. My physical therapist just left. It really hurts when she does her massage on me, but it also feels good. Because I know afterwards, I'll feel a bit better. :o) Today, my shoulders, upper arms, thighs, knees, right calve, and my feet were a problem for me. And of course my back. That seems to be a given. It's hard to hold still for that one. The only thing that I'm still having other problems with is, urninating myself still. This is a severe problem for me. Yes, it is for anyone. It has slowed way down. My therapist seems to think it's because of that medicine as well. As it is leaving my system, it's leaving me with something like that. Oh well. Thats life. I'm dealing. Other then that, things are the same. Nothing new.

Getting there. :o)

Slowly but surley, I'm feeling back to "my" normal self. It has taken longer then I expected. But hey...thats life. :o) I'm not as shaky anymore. On Monday, when my physical therapist came, I had so many new muscle spasms for her to try to rub out. I told her that I had a seizure. She said that would explain the many new spasms. They are slowly easing up on me as well. I'm just glad the doctor told me to stop taking the medicines if I had a seizure. When I am able to type more then I normally do, I will go into more details about things so it doesn't seem that I give up on my medicines. Not the case. I have more then just the fibromyalgia. And....my doctor tells me to do more things then I write about. I'm still weening myself off a medicine that he told me to stop taking, from an appointment before my last one. So, I do not give up on medicines, if I feel they are not working. I do listen to my doctor. I have Epilepsy as well. I've had this since I was a baby. Different medicines will affect that as well. So, the doctor has to be careful of what to give to me for my pain. Then, if I have a seizure, I'm to stop taking them. I'm nothing but a guinea pig.

Finally got some good sleep.

I finally got a good nights rest last night. :o) That will help me feel so much better. Things are going fine. I still keep getting headaches, but, thats to be expected. Just like the pain I'm in....thats to be expected, I have fibromyalgia. Nothing more.

~~~~~~~~~~~~~

Not too much has been going on. Just trying to get my body back to it's normal after the seizure. Still a bit dizzy and uncoordinated. I'm used to that. Thats the way it has always been after a seizure for me. It'll take a few days.

..................

Nothing different to tell this morning.

A bit better.

Well....my night went a bit better then the night before. I'm still not really "with it," but, thats the way it's always been when I have a seizure. It does take me a few days to get back to my normal. The last entry I wrote was not meant for anyone in specific....because the person that wrote to me in an email, "letting me know" all those things, I wrote them back, "letting them know" how I am going to do things in my life. I just had to vent, so I wrote in this journal. I do appreciate all of the advise that I do get from everyone. :o) Just the one that has to tell me how I should live my life. Not advise, but telling me. If that makes any since?.

My back and my legs and hips are still in pain. I'm starting to learn to live with it. :o) I feel if it's not going to go away, then I have to accept it, and move on. I am still feeling what I call, "the after shock" of that seizure. It really messed with my muscles. I had so many cramps, it felt like I had bubble wrap right below my skin in my legs. Or, little marbles. The most of them went away on their own, but the rest are still there. Thats ok. Oh well....it's a part of my life. :o)

It happened.

It finally happened this morning. I had a seizure. I was trying to get ready to go with my daughter to her doctor's appointment, and I could feel it coming on. :o( I called my mom, so I wouldn't be alone. So....thats it...no more new medicines! I experianced a pretty bad night last night, and I never want to go through that again! Which leads me to this.....yes, I realize I will have pain for the rest of my life.....and.....yes, I realize that taking medicines might help me. But....I am a human being with free will, and I will not except my life, just to exist! Since I am human....I will LIVE my life to the fullest of my abilities! I will not except anything less! If my doctor puts me on medicines that make my body not able to function on a day to day bases....then, I feel that I have the right to choose! I choose to live, and not just exist! I do hope that is clear.

Not liking the meds.

Yesterday I had to go to the hospital to get an EEG ran on me. I was suppose to have a CT done too, but their machine broke! So...I have to reschedual it. I'll just get my blood work done at the same time as the CT.

I really don't like what this medicine is doing to me. I'm suppose to give it two weeks. But, it makes me feel like a zombie on speed! I have the shakes preety bad...plus, I feel like everything is moving around me, and I'm not. I can barely walk...because of being very dizzy....and I have no control over my "self" anymore! If I wanted that....I would drink myself stupid! Thats how I feel....a wired drunk! Plus, with the same pain that I've always had. My physical therapist came yesterday, and I had to do some paper work with her. But there was still enough time to do a short massage. :o) She helps me more then my medicines do. I just guess that the doctors are still just guessing on what to do with all of the fibro patients. I feel like a guinea pig though. I'm still hoping that one day...they'll get it right!

Still the same thing, different day.

I have good news, and not so good news. The good news is that my doctor did get my physical therapist back for me. He said that the company that she works for, should have never made the decision on their own, to just cancel me. I agree! She'll be coming this morning around 8:00-8:30! YAY!

The not so good news is, this medicines that my doctor put me on. :o( I'm taking way too many! I really hate the way they make me feel. He said to give them two weeks....I'm waiting patiently for the two weeks to be up! The only thing that I've noticed so far, is that I'm very dizzy, and having a hard time doing things because of it. Not good. Plus...I'm still in pain. But again....I'm giving them the two weeks like he said to do. Plus, having my physical therapist back will help so much!

I just have to remember that fibromyalgia is still not known to most doctors. And that I'm like a "trial and error" type of treament. Which still sucks. All I want is for more information out there to reach more than it has. More normals should take an interest in reading about fibromyalgia. It would help.

The medication.

Yesterday was kind of a hard day for me. I honestly hate having to take more medicines! Getting used to them is a very hard thing to do. :o( I was so dizzy and just felt "out of it," that I was constantly tripping when I walked. Not a good thing! Yes....I'm still having the pain, but I am going to give both medicines two weeks...thats it! I don't like the feeling of not being in control of my own body! I guess thats why I'm not a heavy drinker..lol Seriously...I don't think that I have to be on so many medicines. It doesn't make any since to me. I read in the newspaper last night, that a lady in this town also "had" fibromyalgia, and was talking about how massage therapy really works. And...thats how she got "rid" of hers! I had no idea that you can get "rid" of fibromyalgia. Plus....thats what my physical therapist does for me, is massage therapy! The lady must not have had a very bad case of fibromyalgia. She said that she only had problems going up stairs. So...I guess she didn't. A friend of mine sent me a very beautiful email this morning. :o) It really touched me. It was called the Pink Angel. It was so true! And thank you..by the way! :o) I'll wrap this thing up by saying this....Please stop and listen to friends and family that have fibromyalgia....they just might have something important to say....sometimes a complete stranger can be more of a friend/family member to you then your own.

Doctor's visit.

First of all...I had everything wrote down, so I wouldn't forget anything...and I didn't. :o) I will get my physical therapist back! YAY! I'm very happy about that! But...he still says I need to go to the Cleveland Clinic. I am not finacially able to. I let him know this! I asked him to give me tests, even repeats of the ones that I've already had...I'd go through the pain again...but no. :o( More waiting on my part. Until someone in my family hits the lottery, or inherates a lot of money! I live in the south western part of this state, and the Clevend Clinic is at the other end. Oh well. It's not possible to drive up there for a doctor visit, then turn around and come back...but he thinks it can be done. Nope. But he did, however, write out a form for me to go to our hospital for some lab work. Plus, I have to have a CT, and an EEG ran on me. Thats because I do have a seizure disorder, and he put me on Welbutrin XL!!! It can cause seizures. He also put me back on Elavil!!! ggguuurrrr!!!! Not at all happy about that one! The two combined are suppose to raise my pain threshold! Yea right! It didn't before! But, the one good thing is, I take them both at night. That way I won't have the side affects as bad. Not too long after I took my meds. last night...I was knocked out! I did sleep. I probably could have slept on the pavement out side! I was that sleepy and drowsy! I'm not complaining....at least I finally got some sleep. :o) Since I will be getting my physical therapist back soon, that means I'll have to rearrange my bedroom again. Geesh! It's more then worth it. :o) So....it went ok. I'm not at all happy about the medicines, but, I'm going to give them a chance....thats all, just a chance. I refuse to be "drugged" up again! One very good thing...I did lose almost 30 pounds since the last time I saw him...in October! YAY! I'm working on it! I feel that it's because we've moved. In this house, I'm not confined to only one room. I can move around in the whole house! :o) 2 snaps for that one!!! :o) And...thats it! :o)

Much better! :o)

First of all....I want to thank you all for your advise. :o) It shows me that there are people who do care out there. :o) I agree....what are fibro friends for! :o) Beleive me, it really helps when someone else really knows what you're going through. :o) I also wrote down a few things for my doctors visit today. Plus...I did sleep all through the night this time...YAY! :o) Today, when my mom gets here, I'm going to ask if she can help me with my bed. It needs to be fixed. I need to find something more to put on it to make it more soft. Of course...just because I did get sleep, doesn't mean I don't have any pains. My hips and legs are still acting up. My back, ribs and shoulders are as well. But...I'm leaving that up to the doctor today! :o) They're going to be his problems today! :o) I'll update when I get back.

Very FRUSTRATED!

Ok....I just tried to lay down to take a nap, to make myself feel a bit better. Yea right! I sleep in a hospital bed, with an old fashioned mattress, instead of the hard hospital bed mattress. I have a gel pad on top of that, and a down feathered bed pillow on top of that! And it still feels like I'm laying on the street! My hips, legs, and back started hurting pretty bad! I got up a half hour later. No luck. What else is there that can make my bed feel more like a bed, then concrete? I just don't get it! ggguuurrrrr! This gets so frustrating!

Just another day....

Yesterday was just another day. Nothing different, again. Thats good, in the pain issue. I see my doctor tomorrow. I can't wait. :o) There's a lot I really want and need to tell him. My hips and legs are still in pain, and making it hard for me to walk. I'm starting to get used to it. Just like my back and shoulder pains. It shouldn't be this way. In my opinion. I won't stop trying to find different ways to help myself. I'm on my own mission for my body. I don't even recognize it when I look in the mirror. The weight that the medicines made me gain, the pain in my eyes, and my posture. I know how I feel, and it's not the person I see in the mirror. I've come to except what I have, but I will do everything I have to find someway to help me. If that makes any since? I'm 41 years old, I feel like I'm in my early 30's, (on the inside), and I look like I'm in my late 50's. I go on how I feel! I don't care how old I am....I don't feel it. On the inside...not the outside. Oh well....I've rambled on too much. :o)

SSDD.

Yesterday was the same thing. Nothing any different then usual. Just a different day. I'm still having the same problems with my hips and legs. This morning, my back is hurting again. Nothing unusual.

My husband has finally gotten most of the water out of our basement. Whew! This weather has been sucking! I woke up this morning to find about a half an inch of more snow on the ground. At least it wasn't any more rain! Our basement would really be in trouble. :o( I'm hoping that we will be able to do some laundry today. Oh well. You can't stop the weather. :o) My mom has electricity now. I'm glad. At least she didn't have it as bad as most of the people in this area. They are still without power, and will be without it for another week! I'm thankful that we didn't get that ice storm, just the rain. Better to have water in the basement then being without power.

I'm going to end this entry....now my hands are starting to cramp up once again! Geesh!

......?........

Well this morning so far, my legs are still feeling as if I have rusty metal inside, instead of bones. My left leg is really "dragging" behind me. I don't understand this. Everything I've read about fibromyalgia, it doesn't say anything about this. Plus, I do not have arthritis. Thankful that I have my walker to help me walk. My back is hurting as well this morning. I'm also thankful that our city didn't get the bad weather that most other cities got over the past few days. Whew! They don't have power. The city that my mom lives in, had an ice storm, and she doesn't have power. I called her last night, after I found out, to see if she was alright. I asked if she would like to come here, but she has gas heat, so she's ok. :o) That was really good to hear. :o) Today, my daughter is 5 months pregnant! YAY! I took the photo above this week. :o) I also want to thank all the positive feed back that I've received from my last two entries. :o) Gentle hugs to you all. :o)

Nothing different.

Yesterday, my hips and legs felt a bit better. I was able to walk with my walker. By saying I "felt better," doesn't mean that I'm cured! Ok? It means just that...a bit better. With all of this rain we've been getting, seems to be making me hurt a little worse. Something like when it gets too cold. I don't have arthritis, so I have no idea as to why this happens. I'm still learning. I'd like to thank all of the people that gave me positive feedback from my last entry. I feel so bad that they have been going through the same thing as I am. I know how it feels. It's like when you're going to get married and you're told that you'll lose most of your friends.....you end up with a disease that isn't curable...and you lose the rest of them! Why? Like I've said, I haven't changed. I'm just a person that looks "ok" on the out side, and is in pain on the in side....thats all. I'm a person thats on a mission to find all the information that I can about fibromyalgia. Anything wrong with that? You'd think that the people in your life would want to do the same. But...in the same breath, you dare say anything about you, or about how you are feeling...they're down your throat with...."I know how you feel!" Ya' think?! Give me a break! Or, you're whinning! But...talk about where you've went, what you've baught, or what you've gotten...then it's a great conversation for them! It sucks! How about....doing what you've said you would do to help us out, or, ask if there is anything you can do to help us?! Hmmm. I've asked that question...."Is there anything that I can do to help you?" And then DO IT! I've always thought that you were always suppose to treat others the same way that YOU would like to be treated. I guess some people don't see it that way. But...I'm not changing that thought...I'm still going to treat others the way I would like to be treated....then maybe it might give them something to think about. Or not!

An awakening!

Yesterday was the worst with my hips and legs by far! It honestly felt as if my hips and legs were made of nothing but rusted metal. I could hardly walk, or do certain things. Thankfully, my daughter is here with me during the day. We have to help each other. She isn't suppose to do certain things, and I can't do certain things. I took a nap yesterday, and when I woke up, I had so much on my mind that I must have had a dream about, or was on my mind. Who knows. I'm the type of person who helps people, and I do it because I want to, not to get anything out of it but the feeling of helping others that need it. :o) I donate to charities before I'll throw anything away. This is just who I am. I taught my children to do the same. Now...I've had others tell me that they would help me do things, and not. Counting on this, I had no back up. I took their word. Or...they would come over, but sit and just talk. I appreciate the company...but when I'm told something, thats what I think will happen. I think that others feel I am able to do more than I really can. But...I do what I can, when I can. I can't base my life on others expectations. But, I can expect others to do what they say they will. Someone told me that they would call me back....that was last Wednesday! Yea...I'm still here, but so what! Just because I have what I have, doesn't mean that I still don't have feelings. I'm not using fibromyalgia as a "crutch" as some might think. But, I have helped others out when they've needed it....and I only thought that it would be the same for me...when I needed it...like now, because I do have fibromyalgia. I can't do certain things anymore. I'm so tired of others still thinking that I'm "fine!" My every passing days are gone forever! I like to make sure that they are one that I've done something for others, especially those who can't! I guess I expect way too much from others! I even try my best to help others about fibromyalgia....through this journal. We moved in this house on the Wednesday before Thanksgiving. I still have this room and my bedroom to get done, and boxes to unpack. Everyday, I do as much as I can. Even if it's one or two things, at least I'm getting it done. I was told that I would have help doing this.....nope! But thats fine with me. I've come to realize not to take someones word on anything anymore! I'm just so tired of others "taking" from me, and not replacing it. I would have never in my wildest dreams thought that the ones that are like this towards me...would be this way. It hurts. I'm sure that others that have fibromyalgia and are reading this can relate. Either people change...or, go on with their lives, expecting you to sit by the phone, or sit and listen to everything they've done or went...without you! When it used to be the things that you've done together! I had a prescription that needed to be picked up yesterday. I couldn't do it. I could barely walk! My daughter went to pick it up for me. :o) I suppose this entry is just me venting! I just realized yesterday that I have no one that has my back anymore.....but me. The funny thing is....I haven't changed! I now have fibromyalgia now! Thats it!

pain. :o(

It feels like I'm doing nothing but repeating myself. All day yesterday, my left hip was in a lot of pain! I could hardly walk. If I could use crutches, I would have! But....then again, I should have been in my wheel chair. :o( When the pain is so bad like it gets at times....it seems almost impossible to think straight. I did, however, lay in bed most of the day. :o( At least my shoulder and my neck are feeling much better. Thats something good. I do feel that something is very different going on with my body. I don't know how to explain it. But...I feel that, you yourself, can only really know how your body feels.

Ditto.

I still have the bump...and the pain that is going with it. I dropped something last night while we were watching a movie, and I screamed! I wasn't thinking, and bent over to pick it up. My husband asked me if there was anything that he could do to help. I have no idea if there is. Nothing I seem to do helps. Too little is known about fibromyalgia. Someone needs to get on the ball and figure it all out! I'm tired of trying to do it all on my own! I don't want to be scared for no reason.

I found another "bump."

A couple of days ago, I was having some pain when I bent over to reach for something in a seated position. I've had this pain for a long time. I just thought it was an ulcer. How am I suppose to know what is, and isn't the fibromyalgia? Last night was the worst of the pain. It's located right below my right breast, and just above a rib. I can now feel it with my hand. Not just from the inside anymore. I couldn't eat again yesterday because of it. It makes me feel nauseated. I really hate this disease! You can not tell what is the fibromyalgia, or something else.  

Happy New Year!

Well....it's finally over! The holidays are now behind me. I can start to relax now. I didn't stay up till midnight last night. I was in too much pain to do so. When I got up, I seen the party favors still on the table....so I guess no one else did also. I don't have much to say....I'm just so tired of writing repeats in this journal. Yes...I'm in pain. Thats it!