Please don't take life for granted.: March 2008

Sunday, March 30, 2008

~Simply Me~

My daughter had a pair of her shorts on when I took these pictures but her baby bellie kind of got in the way! lol :o)

There was a sale going on at Kohls and JCPenny's. My daughter and I went to them. I took my portable oxygen with me. It has 4 hours on them. I'll tell you...I don't think I'll be able to go anywhere by my self. I'm so glad I took it because it really helped my breathing. I'll just have to practic in the house so I'll be able to use it and take it with me solo.

I was beat! Whew! I think that will be enough for me....for awile! :o) I'm so glad that I did get out. I pushed myself but, I'll be alright if I am able to get my rest.
Today was a day that both the MS and the fibromyalgia was really acting up. Yikes! The good news is that I think I've finally figured out what pain is what. :o) The last time that I got "an electrical" shock feeling, I'd have to say that it was the worst one I've ever had. Dh finally seen it and didn't know what was going on. Because like I've said before...these "shocks" make me make a weird noice. Maybe a scream or a grunt, it just depends on how hard the shock feels. This last one made me scream. I'm kind of glad I didn't do that while I was in public. :o)
It's ok with me, because I could care less what other people think when they stare at me. I just don't want to ever emberres my daughter or son.
I'm going for now. Gods Blessings to you all! :o)

Tags: MS, Fibromyalgia, Family, Life

Please Read!*

I need to know something that only you read and comment in my journal.
I just found out today that I have really hurt a very good friend of mine. I had no idea. When I write, I write about my life and what happens and my feelings etc... And my question is to you all, and please don't hold back, I want to know the truth. Have I hurt you? I'm just so very sorry.

Lisa

The Cure

A woman went to the doctor's office and was seen by one of the new young doctors. After about four minutes in the examination room, she started screaming and ran down the hall. An older doctor stopped her and asked what the problem was, and she told him her story. After listening, he told her to sit down and relax in another room. The older doctor marched down the hallway to the back where the first
doctor was and demanded, "What's the matter with you? Mrs. Terry is 63
years old, she has four grown children and seven grandchildren, and you told her she was pregnant?"

The new doctor continued to write on his clipboard and, without looking up, said, "Does she still have the hiccups?"

Tags: Humor, Joke, Laugh

Friday, March 28, 2008

But you don't look sick?

"Oh honey, you can't be sick. You look too good." "I get pain too. You just have to fight through it." "Stop being so dramatic. It can't hurt that bad." "If you just lost weight, you'd feel fine." "Maybe you're just getting your period."

These are some of the 'well meaning' and 'well intentioned' comments I've gotten from people when I've told them that I have Fibromyalgia. I know that I am not alone in this. However, it just burns me. People with Fibromyalgia, Chronic Fatigue Syndrome and a host of other illnesses including hairing impairments, other autoimmune conditions and much more, have to deal with this seemingly helpful and kind sort of backhanded compliment.

I can be in pain and not look like it. I may look too good to be sick, but what's that really supposed to mean? Should I stop caring about brushing my hair and everything because I'm sick? There are some days that I can't do that, but no one says to me then..."my, you must have fibromyalgia!" They just think I was too lazy to care. I also don't wear make-up anymore because most of it just really aggravates my skin and perfume - fuggedaboutit. It's impossible for me to handle with all of my chemical sensitivities.

Unfortunately, if I tell people that, then I get the strange looks and the cocked-eyebrows. You know the ones. They make you feel like you're crazy. It just couldn't possibly be like that. "You're too sensitive!" Hell yes, I am. Fibromyalgia is a disease of sensitivity in many respects. However, it's my truth and I would like people to give me a chance to explain myself.

Boy, do I sound cranky? Maybe, I am getting my period (lol!).

Eleanor Roosevelt said it best, "No one can make you feel inferior without your consent." The longer I've had this disease, the more I realize how true that statement is. However, I don't think it's too much to ask to have people tell me I'm not sick and that my disability isn't real just because it doesn't look like it to them.

I had a woman crying on my couch just yesterday. She talked to me of her pain and her shame with her invisible disabilities. Her husband doesn't believe how sick she is; she had to struggle to get social security and now, she may lose her meager benefits. My neighbor has Lupus. Because she 'doesn't look sick', other neighbors get mad at her when she parks in the handicapped spots; even though she has a sticker!

Those things outrage me. Of course, if I told you my biggest pet peeve, which was --- we have about oh 5-10 pills for erectile dysfunction and impotence, but none that work for many invisible and visible diseases-- you'd laugh, of course. However, that's a story for another article!!!

Tags: Fibromyalgia

~About.......?~

.....Just to let you know, nothing in this journal's entry is toward anyone in specific, I use it to write my feelings, and about my illnesess, and in hopes it might help someone else as I do.I do not pretend nor imatate to be someone I'm not. And if you might take an entry wrong and feel that it is about you, I'm sorry but It isn't, it just may seem to coincide with your own life. And if there is something in what I write that "offends" you, options; don't read, or realize that this IS real life, and learn more about it! I also know that what I write in MY journal, that NOT everyone will agree with me and I don't expect them to! God bless you!......

Thank God it's Friday! I'm so glad this week is over.
I had a lot of tests to go take this week. I cancelled them all and re-scheduled them. I needed a break and I just wanted to be alone. Alone to think.
The only test I did was the sleep test. All I had to do was to show up at 7:30 pm. and they put the electrodes on your head and body then get in bed and go to sleep. If you can. What woke me up was my right knee cap. I woke up screaming because of the pain and the man came running in my room to see if I was alright. I just let him know that it was my fibromyalgia acting up, nothing serious. I think it was around 4:00 am. when I was able to come home.

And yes...those video's really cheered me up. I checked my mail, posted the videos and washed my hair. Ick! That wicked goopy stuff they have to use, was all over. Then I went to my bed to rest.

I think I found a doctor. One that will come to my home. It has taken me along time to find one. For me to keep having my nurse and physical therapist, I had to have a doctor, and not a nurse pratitioner. But use her until I find one. They took my information and will give me back a call. And yes they are taking new patients and my insurance. Thats the best news I've heard in awhile.
I also had to listen to a man that came to my home to let me know if I could keep my physical therapy. I have NEVER felt SOOO belittled in my own home!!! He is a PT as well and is over the one I have. HE'S the one that "decides" if I still need one!!! I'm sorry but I had no idea that this person had the same exact things and pains that I DO!!! I DO NOT like the idea of ANYONE having or even thinking of having this much control over MY LIFE!!! I don't think so! And yes, I did let this man know how I felt! Then I had to go rest and I really needed the oxygen then! Then I called him and let him know even more on how I felt! NO ONE in this whole world has a right to tell ANYONE how they feel! And I told him this! I WILL NOT let this happen to me!

After I talked to him, then I called my physical therapist to let him know how I felt and what I told that "stupid" guy.
Then I get a call on the same day that I'm going to be getting a new nurse! aaaaaaaaahhhhhhhhhh! I just couldn't believe this day I was having! This new nurse I was going to get kept calling me to see what she was suppose to do! She told me that the files were all over the place and she didn't understand them! What?! NO WAY! And "I'M" suppose to tell her what shes to do? When she came yesterday, she did everything she was suppose to do and even knew how to put my medicines in the reminder box. Boy was I so grateful that it turned out for the good. Whew! My home health aide was here as well. She does my laundry first. I'm sitting in my room with the oxygen on and I hear that the washer was 'off' and making that boom sound. I yelled to her to go fix the washer. I didn't get a responce, so I had no idea where she was. I got up and she was in the kitchen. I yelled at her, telling her to not let the washer do that, it will break the drum inside! She went and finally fixed it. I had both of my doors shut so it would get cooler in my room. It was awhile before I seen her. She came in and asked me what I wanted her to do next. I apoligized to her about yelling at her because I was having a bad day. It wasn't her fault. lol...she told me that she never wants to piss me off again! lol I guess I scared her. That wasn't my intention.

And now it's today. I guess I just have so much on my mind and I really need to get it out before I hurt more people, like my family. I do feel pretty bad. Just it seems that so much has happened this week. I even don't have my best friend anymore. I'm really glad that I cancelled my tests. I couldn't imagine what my week would have been like. I'm just glad this week is over. I called dh at work yesterday to see if he could come home early. I just needed to talk and get a few things off of my chest. He told me he'd try. When he got home, he hugged me. I needed that. He's the only one that can calm me down. And he did. :o)
I'm very grateful for my family! I love them all so very much! :o) I also need them. :o) I'm also so grateful for what I have....Love! :o)
I'm signing off now....! :o)

Don't walk in front of me, I may not follow. Don't walk behind me, I may not lead.
Just walk beside me and be my friend.

Tags: MS, Sleep test, Fibromyalgia, Family, Love

Thursday, March 27, 2008

#2

A video of Kayden drumming.

First of two videos. I wasn't here last night because I had that sleep test. I came home early this morning and had seen a note for me on my camera. It said, "A surprise for you!" And the videos are what the surprise was. :o)
I love them. He is playing on my son/Uncle JJ's drums. :o) What a great thing to come home to. :o)

Wednesday, March 26, 2008

I've been sitting here fighting pain in my body, so I can write.
It's grabbing me without any remorse or any real reason. Yet I'm still sitting here fighting it. I don't know why. It's making me very sick to my stomache.
From what I've learned, this pain is fibromyalgia. I'll get muscle cramping that can make me go to the floor. It does nothing but 'take' from you.
When I was a baby, I was diagnosed with epilepsy having gran ma seizures. While growing up, I got used to the tests and the medicines and what it made me do. involuntary movements were hard to hide, and even to fight. Then, it became nothing to me because I just got used to living that way.
I also had to 'fight' off my stepdad. This time, I didn't have the problem or sickness, he did. He liked to come into my bedroom at night. I learned how to 'fight' him.
I was in and out of the hospital because I always had problems with stomache ulcers. I was too young to have them. I just learned how to 'cope' with them.
I did so much to be 'normal.' My normal. If it even existed. I didn't know. I know I faught for it. I've been 'fighting' all of my life. I guess for something that either is there or isn't. And I don't know if i'll ever really know. I just know I'm 'fighting' for it.
I don't know what it feels like to be 'normal.' Only my kind. And I still fight for it. This comes to me as nothing more than just living my life. What's it like to 'not' fight? I wouldn't know the answer to that one.
Fighting is an instinct to me because thats just the way I grew up. I know nothing more or even less. Since 1994, I've been going through tests to see if I had multiple sclerosis. Thats how everything else was found thats 'wrong' with my body. I'm grateful to a few doctors that has helped in finding these. Then last March it was found. And I'm still fighting the pains from it. Very different than the fibromyalgia.
At first, it's not very easy to tell whats what, and whys.
I've been living this way for years and writing about what I do go through. And I do it the best that I can. Because I want badly to help others so they don't feel alone. I know I did. It didn't take me as long as it did with being diagnosed with fibromyalgia as it's taking with being diagnosed with multiple sclerosis. This one is harder to fight. I try very hard every day to fight it. Maybe I should and maybe I shouldn't. But what I know is to fight. And fighting it is hard. Because I found that I can't do it. Not because I'm weak, but because my body already knows that the multiple sclerosis has won over that part of me. The vessle that my soul lives in. I'm not saying that I'm going to just lay down amd not fight, I'm saying that it takes longer for me.
The other things that I also have and fight everyday are irrelivent to this. They do hurt me and gives me much pain as well, but not at all or even close to what the multiple sclerosis and fibromyalgia does. Not close at all. I have my own 'pain chart' now. When I'm asked what would I say that my pain is today, I tell them, "On my pain chart,it's ___." The 'normal' pain chart got thrown out the window years ago.
This morning I woke up and my body doesn't feel so good. It's stiff and hard to walk. Now, my soul is doing great. No problems there. Thats also a fight, my body and my soul. I never know from day to day, which one is going to win. My body and my soul are not on the same page. It's pretty rare if they ever are.
I don't mean to do nothing but to write 'negative' things all the time. To me, it's not. To me, I'm only writing about my days, my life as the way it is. And to me, it's no different then if someone writes about 'horses' everyday. And I'm really not sure when I write, if I am being negative or not, to all of you who read this.
This is my life fighting. To me, it's just that simple.
And now, that brings me to this; I've lost readers because of my 'fight' in my life. And why? It just shows me that the people that said they'd "be here" for me isn't. And thats alright. Who wants to read about someone that has illnesess?
I understand.
My point to this is, I've fought almost all of my life to just live. Instead of existing.
How I see this right now is that I'm going to be fighting this for awhile. Yes, when you get bad news from your doctor, it's not easy to swollow at times. And no one can say that it is. It may take awhile, but I bounce back. I need to 'give me' some time to grieve. I think everyone should do that.
I'm still going through this "funk" for over a year now knowing that I do have MS. I think it's normal and human nature to do so.
In the end...the body and the soul are always going to fight.
I do wish that everyone has a great 'hump' day!

Thank you Connie for the beautiful tag! :o)

Tags: Blogplug, blogplugs, MS, Fibromyalgia, Epilepsy

Tuesday, March 25, 2008

Two men are out ice fishing at their favourite fishing hole, just fishing quietly and drinking beer.
Almost silently, so as not to scare the fish, Rick says, "I think I'm going to divorce my wife - she hasn't spoken to me in over 2 months."

Dave continues slowly sipping his beer, then thoughtfully says,

"You better think it over - women like that are hard to find."

Tags: Humor, Joke, Laugh

~what next~

I'm really hoping that today will be a much better day then it was yesterday. My stress level was off the charts!
I have to go and get an MRI done today at 11:00 am. How ironic it was for me yesterday. I called and resheduled my heart doctors appointment and if I would have gone, I wouldn't have gotten that phone call. I still would have gotten the massage, but not like I did. Now I can go see my heart doctor with this new information that I have.
All I did yesterday was cry. It has come to the point to where I've never been. I ask, "Why?!" I usually except things and then go on. But not this time. I feel very different about this. I don't like this feeling. It kind of seems like it's time. I'm not sure how to discribe the feeling.
My face is so swollen, my tears collected right under my eyes in a little pool.
There was a very big reason on why I named this journal what it is. Too many people DO take life for granted. I did. Until my body started giving out on me. Too many people go too fast and don't see, hear, feel, taste life! Take it from me...start to. It doesn't take that long. It takes longer to explain 'why' you didn't!
Life is too short. Just "LIVE" it!
I hope you have a blessed day.

#3

Kayden and Madia playing basketball

Again, I don't know why my camera is doing this. (only allowing me to record for a certain amount of time) So, I have 3 short video's of the two of them playing.

#2

Monday, March 24, 2008

ssdd/logging

Again...just talking to get this out of me. Sorry, but it helps. And your comments help as well. Believe me...they do.
Firstly...I am only human and have human/flesh feelings. I'm not perfect. Only human.
I want to share with you apart of a comment that I recieved yesterday. I guess it's the way that she puts things. Thats the way I know that she does understand me. Here is just a part;

I'm so sorry they have ignored you and not included you. they need to before they can't.

Thats how I feel exactly! I think that could be why I'm very sensitive. My illnesess and to not be able/allowed to participate. It makes me feel that I'm not 'enough' for that. I'm not a full body. That hurts. I use my memory when I do get to particapate in something. Because then I can 'see' them and how happy I was at 'that' time. I realize that a lot of you won't understand any of this, and thats ok. I'm not claiming to be perfect. Only human.
What hurts the most is, when it's a family member. Dh finally realized last evening what and why I was upset. He said, "Someone should have woke you up this morning!" Uh...yea!!!!!!!!! I missed my grandson's moment and will never have it in my memory. Again, a lot of you won't understand.

Yes I am whinning. Because my heart was hurt.
Yes, I do know the meaning of Easter. That is something wonderous! I'm talking about my life. What I go through. And it sucks.
What I did yesterday;
*I took a long nap after my daughter and her family left. I cried myself to sleep.
*It was around 5:00 pm. when I woke up.
*I looked through the channels on tv. to see what was on. The Shining was on. I love that movie and it's written by Stephen King.
*I got up to see who all was here. Just dh and I.
*I made a plate of the ham dinner that was nade.
*I sat in bed eating and watching Shining.
Thats it. Same stuff, different day!
Ok.....I just got a call from my doctors office. They are going to call in a new medicine for me. I'm to stop taking the meds. I'm on now for cholesteral. My try's are up to 387!!! And my cholesteral is up to 217. Which isn't that bad. It's just suppose to be under 200! I was just checked for all of this! :o( If it's not one thing, it's something else! :o( I'm sorry, but thats all it ever seems to be...nothing but not so good news!
I have to calm myself down, my chest hurts now.
Oh well......
Life really sucks! I'm really wondering why I'm even still alive! Whats MY purpose? It's seems to be for others to kick me when I'm down!

Thank you for signing my guest book, I really do appreciater it.

Tags: Life sucks!

Sunday, March 23, 2008

sorry not so 'upbeat.

I do hope that everyone had or is having a great Easter Sunday today.
Again, I have to step back into the dark when it’s the holidays. I’ve had to do that all through my daughter’s life, and I find now, I’m having to do the samething with my grandson. And it hurts. I didn’t even get to see him look for his Easter basket. I was asleep and no one even came in to wake me up for it. My stomache is in nots, just like it used to be when my daughter was young. I’ve even asked before if we could at least see him on Christmas morning...nope, too busy with ’others.’ I’m so very tired of having to be back in the dark when it comes to holidays. It hurts me so badly. Like I said this morning, "Oh well, I’m used to it!" Which makes me feel like total shit.
I won’t be here that much longer anyhow, so it will make it easier on them to decide where they go. I hate hurting like this. I’d much rather be pissed then hurt. All I have planned to do today is to sit in my bed like I have to do every day. I'm sick of it.
Within a years time, I was diagnosed with 3 other health problems! These are life altering! Plus, it scares me. I have so much more that I want to do and say in my life. My grandbabies are my world! I live for them. I have so much love to give. But I guess not everyone will be. Yes, I wish these illnesses came with a ’handbook’ for me. But it isn’t that way, "I" have to be the one to figure it out and then go from there. And do you know how hard that is? Very!
My heart hurts.

Saturday, March 22, 2008

About Friday the test....

I had an appointment Yesterday to see my Neuro again. Well, to have another test. And on Tuesday, I have to go and get an MRI again.
I had an evoke test yesterday. When I got home, I just wanted to lay down. I was drained. I still had all of that 'goopy' stuff in my hair. There was no way that I could have washed my hair. Just really zapped. What I did was I put a bandana on so I could lay down without getting all of that 'goopy' stuff on anything.
My grandson really thought I looked cool! lol :o) He wanted to wear one too! :o) I found another one and put it on him! Too cute!

I may be repeating myself but, I didn't read my last entry. Oooopsie! :o) I honestly think that the part in your brain that helps you with memory has been used up! lol I think I need a replacement! :o)
I'm having a hard time with this oxygen. I didn't take my portable one when we went to the doctors for my test. I would have been told to not wear it.
I can really tell the differance if I don't wear it. The inhaler really has been helping as well. I take it with me everywhere I go, even in the house. (as if I really go anywhere :o) ) LOL
Yes, I can feel the damage with my lungs and my heart. When I don't wear the oxygen and walk around the house, My chest hurts and I can hear a 'gurgaling' (sp) sound in my chest. Tonight that was happening to me and all I did was walk from my bedroom to the kicthen and I was so out of breathe, I had 'tunnel' vision and felt as if I was going to pass out! I went back and put it on and rested again, because I was having a hard time breathing. <sigh> I have good news; I haven't gained anymore weight! YAY! :o) I'm still swollen, but I'm not like I was the last time. It seems to be just staying where it's at for now. I can handle that! :o) <snap!> I'm going to go now. I'm not able to sleep again. My sleep test is on Wednesday.
Have a great day tomorrow! And a safe and blessed Easter!

Tags: CHF, Easter, Family, Love, My life

†♥~Easter Blessings~†♥

Have a Blessed Easter!

Tags: Easter Blessings

~† † † Happy Easter† † † †~

Have a Happy Easter!

Tags: Happy Easter

Sharing

I found a slot machine game that I used to play all the time. I found it again! :o)
Here is the link. :o)

~Your moment to fulfill ~

This day is too valuable to waste. The people in your life are too beautiful to ignore.

Take a moment to remember how fortunate you are to be you. Take a look around, with your eyes lovingly and enthusiastically open to the possibilities.

Most of what you fear does not even exist. Much of what you love is closer than you realize.

You are just one small step away from being on the path toward your most treasured dream. You are just one brief thought away from understanding the richness that is your life.

You have traveled a long way to be where you are. With every step you have gained something of real and lasting value.

Now is a day to move forward with more experience, knowledge and wisdom than ever before. Now is your moment to realize and fulfill the miracle that is your life.

-- Ralph Marston

Tags: Think

Last one!

#5

#6

#4

#2

#3

Kayden & family coloring eggs!

For some reason, my camera wasn't working right. So I have more videos. I hope that you'll enjoy these as much as I did! :o)

Lisa

Tags: Easter egg coloring

Friday, March 21, 2008

Wife's Birthday

Bill meets Doug shopping at the mall and sees he has a small gift wrapped
box.

"It's my wife's birthday tomorrow." Doug said. "Last week I asked her
what she wanted for her birthday."

"And???" Bill asked.

"Well, she said 'Oh, I don't know just give me something with diamonds
in it'."

"So what did you get her?" asked Bill.

"I bought her a deck of cards!!"

Tags: Humor, Joke, Laugh!

Thursday, March 20, 2008

LOL

Only in America ......do drugstores make the sick walk all the way to the back
of the store to get their prescriptions while healthy people can buy cigarettes
at the front.

Only
in America ......do people order double cheeseburgers, large fries, and a diet
coke.

Only
in America ....do banks leave both doors open and then chain the pens to the
counters.

Only
in America ......do we leave cars worth thousands of dollars in the driveway and
put our useless junk in the garage.

Only
in America ......do we buy hot dogs in packages of ten and buns in packages of
eight.

Only
in America ......do they have drive-up ATM machines with Braille lettering.

EVER
WONDER ...

Why
the sun lightens our hair,
but
darkens our skin ?

Why
women can't put on mascara with their mouth closed?

Why
don't you ever see the headline "Psychic Wins Lottery"?

Why
is "abbreviated" such a long word?

Why
is it that doctors call what they do "practice"?

Why
is lemon juice made with artificial flavor, and dishwashing liquid made with
real lemons?

Why
is the man who invests all your money called a broker?

Why
is the time of day with the slowest traffic called rush hour?

Why
isn't there mouse-flavored cat food?

Why
didn't Noah swat those two mosquitoes?

Why
do they sterilize the needle for lethal injections?

You
know that indestructible black box that is used on airplanes? Why don't they
make the whole plane out of that stuff?!

Why
don't sheep shrink when it rains?

Why
are they called apartments when they are all stuck together?

If
flying is so safe, why do they call the airport the terminal?

Tags: Humor, joke, Laugh!

Tuesday, March 18, 2008

N/A

I just need to talk a bit right now. I hope you won't be thinking that all I'm doing is whinning. I just still can't wrap my brain around things. I feel overwhelmed. I have been feeling weaker. The fight is getting harder and over all, just putting a toll on me.
I had missed a call on Monday from Legacy, where my other oxygen is from. I called in the morning and the guy brought me 4 little tanks that holds 4 hours. I have a little 'bag' that it will go in and it's not at all heavy for me. My oxyden level was checked as well. The first reading was 91, then he had me keep the 'thingy' on that does the checking and I also had the other oxygen on. He had me walk back and forth from the Kitchen to the living room. My number was 98. He said that it proved to him that it does help me. I already knew that. Soooo, I'm now on oxygen all the time now. Bummer.

I like what the above poem says. It kind of tells of what I'm going through in my life with the people in it. I've made hudge life changes. Because this is my life and I have to think of me. Not everyone else. I even lost my best friend. I don't need anymore drama in my life. It's been a bit more relaxing.
There are times to where I honesty feel like I'm going to really lose it. I'm holding on tight to my faith. When you're at the end of your rope, just tie a not at the end!
My life changes so much each day. What scares me is that I never know what my body will be like when I get up in the morning. This is my life right now until I am able to find another way to fight this. And I will.
My grandson wanted his picture taken with us. :o) We just couldn't say no. :o)
Thank you for listening.

Tags: MS

My neurologist appointment/and my legs and feet....

Good morning. I'm going to do my best to explain my appointment that I had with my neurologist, and my legs and feet. Bare with me.
I haven't seen him for a few months now. It takes about an hour to an hour and a half to get there. It's worth every mile. When he came into the little room, he always shakes my hand and sits down and then we talk. He will stay in the room and talk with/to you if you need to. Yesterday when he came in the room, he shook my hand and my moms like always. As he sat down, I noticed that his eyes were all red and it looked like he had a large hive on his forhead. In my opinion, it looked like a bad reaction from something. He did apoligize for rubbing his eye, etc...
This was an important visit for me. The last time I seen him, he told me that he was going to raise the Lyrica and put me on a MS medicine. He did raise my Lyrica to 3 times a day instead of 2. Now he didn't put me on an MS medicine.

My bubble was popped! I was really excited and couldn't wait for this to happen. The reason he wasn't putting me on anything right now is because of the CHF. He said that having that will alter 'any' medications. Bummer.
He wants me to take this one test on Friday to see how fast my brain recognizes pain and such. I'm to be down there at 9:00 am. on Friday. He then said another MRI. You know, I'm really getting so tired of the MRI's. I know they will show the lesions so he knows where and what to do. If you only really knew how much I hate taking more tests when they have been the same ones, and really, it doesn't even matter anymore. I'm tired. You know when I write about me being at least 1 to 2 months ahead of him? What that means is when he diagnosed me last March, he told me how he thought my body would progress. And I've been doing my best to prove him wrong! :o)~ I like a challange! Well...I'm there. I'm actually at the place he said I would be. I'm mad about that. I've been working hard and overtime just to prove him WRONG!!! I'm sorry, I guess I'm going to cry about it for the first time now! I so hate this! I don't want him to be close to being right! :o( All of you know how much I've been fighting my body. My strength is going away. Oh...and no, just because I 'know' about this has NOT affected the way I am in any way. Only to give me a challange to fight against.

Ok....a bit better now. When he told me that he wasn't putting me on any MS medicines, he also mentioned something about me being in a nursing home. :o( I will get cared for. After my mom and I heard that....we both kind of stopped listening. He did tell me by the end of last year I'd be in my wheelchair because of how fast this has progressed. My legs. I actually should be in it a lot more than I am. And told me by the begining of this year, in the first few months, I'll be in a home. At that time that he told me this stuff, I deffinitly never seen it that way. Plus, I've been fighting it. I'm not sure if thats good or bad. But I'm only 1 month behind what he told me. I was 2 until this last relapes hit me. He was glad to hear that I was on oxygen. And he is also pleased with the medicines I'm taking.
Overall, my appointment went ok. Just things I DO NOT want to hear!!! This is just a piece of my life. I don't have to like it. Just live with it.
We didn't get home until late in the afternoon. There were 2 accidents on the highway. When I was getting out of my clothes to put on something more comfortable, my ankles were swelling. Again, they had this 'pocket' look. I showed my mom and told her that they will fill out, and they did. Thats why I took the pictures.
I'm very sorry that this is so long. I guess I had more things to say this morning. And all I keep saying and thinking is, "I'm only 44!" And I do know that things can hit anyone at anytime. Believe me, my heart goes out to you.
Wrapping this up now. I'm swelling agiain and the CHF is for now, preventing me to have MS medicines.
I pray that all of you have a great and safe day. God bless all of you.

"If you live to be 100, I hope I live to be 100 minus 1 day, so I never have to live without you."
~~Winnie the Pooh

Tags: MS

Sunday, March 16, 2008

All I need to do is just get a few things off of my chest.
Last night when I was resting in my room, I was just wacthing tv. Dh had come in to check on me and to see if there was anything I needed. I guess something in what he had said just made me cry. I know that I'm writing out of order...my last entry. I just still really need to talk. And, thats how I feel. There are times when it would be great to have someone to talk to. I mean for like maybe an hour. That would be nice. I'm not able to sit in the living room with everyone else. The couch and the futon sit too low for me to sit on and then get back up. Sometimes I can sit in the rocking chair, but not always. The only places that I'm able to sit is my beds and this chair. I don't blame anyone if they don't want to come back here.
Like I said in my last entry; my days are not like they were. No more day to day, it's now a minute by minute.
But when dh asked me that, I guess I'm just a bit sensitive. Well, I know I am. Since my body has decided to go out of control on me, and the loses thats happening during this, is taking a hudge toll on me. Mentally and physically. With not really being able to go anywhere because of my lower back pain is so painful and not knowing whats going to happen, and of course my abilities that I'm losing and have lost, it's just too hard to even 'think' that far ahead.
This stuff is really a ride I can't seem to get off of. I feel like I'm hip deep in nothing but "shit." I realize that this might be hard to understand and I'm doing my best to describe this feeling.
I get so confused! This is taking me down. Because it's like "attaking" my brain as well. If that makes any sense. It's as if I constantly have to be working my mindby counting and just things like that. I'm really getting tired of this. I've gotten weak. In a lot of different ways. I'm experiancing so many things all at the same time. It's taken it's toll on me.
I need to go.

Tags: MS, Life

Saturday, March 15, 2008

Logging

.....Just to let you know, nothing in this journal's entry is toward anyone in specific, I use it to write my feelings, and about my illnesses, and in hopes it might help someone else as I do.I do not pretend nor imatate to be someone I'm not. And if you might take an entry wrong and feel that it is about you, I'm sorry but It isn't, it just may seem to coincide with your own life. And if there is something in what I write that "offends" you, options; don't read, or realize that this IS real life, and learn more about it! I also know that what I write in MY journal, that NOT everyone will agree with me and I don't expect them to! God bless you!......

I need to log about my day. I'm up now because I can't sleep. My lower back and my spine is hurting pretty bad today. I rested and I walked. I took a nap as well. I'm still having problems with my coordination and my memory. I'm pretty weak as well. I'm fighting my own body! It's difficult to do and it really wears you out.

I am wearing my oxygen and have been all day. For some reason, it helps.
I'm having a very hard time to try and have a conversation. I'm struggling just to have a small one. I get so frustrated because I'm not able to find the right words. This one is winning! I don't like that. I feel the need to win. My heart and soul are still the same as they were years back. I'm fighting my body. I used to use mind over matter and it worked, and now it doesn't even budge anything to the right direction. I guess it's like I'm short circising (sp). I'm so weak because of trying different things to try and help my body. I have to admit.....I'm startig to lose this battle! I'm upset about it. I knew it was going to happen sooner or later.

I'm also noticing that if someone would ask me if I would like to do_______(fill in the blank), I have a hard time with deciding. Because it's not a day to day thing anymore, it's like every minute now. Because I don't know whats going to happen. I really don't like this. I've also noticed I've/am lost so much recently. And it's still happening. It's like every morning when I wake up, I have no idea on what I'm able to do that day.

Tomorrow I''m going to use my wheelchair. My balance seems to be acting up on me. And I'm not at all very gracefull. lol I can trip on a pattern on a rug! :o) And it's getting worse! I don't feel safe.
I need to go. I'm getting a bit dizzy again.Geesh! God bless all of you! :o)

Tags: Multiple Sclerosis

Good morning!

I did it again....Up too early. I got hot and that will wake me up. I can't over heat. My fibromyalgia will start to act up and I'll get all kinds of muslce cramps. It's 36 degree's here and in my bedroom I have my window all the way open! I expected to see the temp. in the 60's at least. I've turned my fans on and it has cooled way down for me. I've glad it did!
My body has been doing more things 'on it's own' again this week. As you can see in that little video, walking is one thing I'm fighting. By the time last night, I was actually 'scuffing' my feet on the floor. That wasn't fun. There are some days that my mind wins over my body, but yesterday wasn't it. Yes, I should have been using something else in stead of my cane. If I use my walker and fall, it's so much worse if I fall with my cane. Let me see if I can explain it...I've fallen while walking with my walker several times. It's more dangerous for me as the walker either falls on me or I fall on it....and I hurt myself so much more worse. Don't get me wrong, yes, I do use it, but I'm scared when I do. I know this probably doesn't make too much sence. Actually, what I really need to do is to start using my wheelchair again.

My nurse didn't come over yesterday. She was suppose to come over to draw blood and help fix the medicine thingy. The nurse that came on Thursday, the one that was new to me and screwed things up....Well, she had also screwed up when the machine goes off!!! It was doing it all through the night!!! What I did was opened it and got the doseage's out that way. Then I pushed my button to the ERS to let them know why I wasn't responding to the machine. They talked dh through it for me. They are so nice.
My day yesterday was nothing but pretty hard on me. Of course my walking but, eye hand coordination, vision, shaking and talking. I was having such a hard time finding the right words to speak. Sitting something down on a table; I would either miss it or slam it. Vision blurred. Shaking no matter what I did. My arms feel as if they are these two hudge heavy things just hanging off the sides of my body. I had a few heart palpitations as well.
I can't seem to shake off the feeling of wanting to go to sleep. This one might be hard to explain. I guess just like I said, I'm so tired most of the time.
I'm glad that I do log things. I've had to come to this journal for my physical therapist to know when and what has happened three times.
I do need to go. I can't seem to focus right now.

I can live for two months on a good compliment.
Mark Twain

Tags: Pains, MS, Fibromyalgia, Life

Friday, March 14, 2008

pictures/video

I thought maybe I'd try and walk. ggguuurrrr!

Lisa

......another day

Good morning to all of you! Thank you for signing my guestbook! The picture on the sidebar is me. It was taken a few years back. :o)

Yesterday went pretty smoothly. My nurse was busy, so she had sent over another nurse. She had no idea what she was doing when it came time to put my pills in the reminder machine. I put all of my medicines right there along side of it and the key to open it. Which I wear around my neck with the ERS button. I tried helping her and letting her know what was what. She didn't believe me so she called my regular nurse. She told her that I am (for lack of a better word) With it enough to do my own medicines. The machine is just to help remind me, thats all. Then she told me that I would have to wait until today to have my regular nurse deal with it. My regular nurse did come after what she had to do, and was not happy. I was pissed! Because when I went over to the machine, there were pills all over the floor!!!!!! I started to yell and my nurse said that if I reported it that she would be the one that would get in trouble and I don't want that, I want the other nurse to get in trouble! My pills were all wrong to the fact that I would have been over dosed too!!!! I'm very thankful that my regular nures was able to come to fix it.

By the way; I hope that I never come across as being an energy vampire that only thinks of themselves. I have never felt sorry for myself. Please let me know if I do come across like that. All I'm doing in this journal is logging and writing about my life.

I love that graphic...it says it all! :o) lol
This morning when I got up, my legs are different. When I walk, it's like I'm stomping! I can pick my feet up, but when they need to go on the floor, thats when I feel as if I can't control them because they just 'stomp.' I wish I knew how to describe it better.
Ok, I just asked my daughter if she would take a video of me walking.

She also gave me the permission to post pictures of their new home! :o)
My grandson is taking a few toys over. :o) They're getting ready to leave now so they can clean. :o)
My mom has said that it's a good sign when you're moving into a new home....and it's raining! :o)
I am just so not 'withit' today at all. I'm having a lot of trouble saying things. I really don't like it when this happens.
On that note.....I'm going to leave it at this. :o)

Tags: Family, Love, MS, Life