Friday, December 23, 2005

Who knew?

Who knew we could all
whether we could walk or not
stand proud and tall
when life has dished us a lot

Who knew there was this place
whether we could read or not
to look our troubles in the face
when life has dished us a lot

Who knew there were others with our pain
whether we could see it or not
that felt so much the same
when life has dished us a lot

Who knew we could bond so tight
whether we have met or not
to have help with our fight
when life has dished us a lot

Who knew we could stop feeling alone
whether we knew it or not
where we could leave our comfort zone
when life has dished us a lot

Who knew we could stop being afraid
whether we wanted to or not
where our best friends have been made
when life has dished us a lot

I knew all along I could make a better life for me
whether anyone believed in me or not
I believed in myself, I did it for me
when life has dished me a lot

I wrote this poem a few years ago after I decided to accept the fact that I had this MonSter. Sometimes when I'm feeling down I read this and try to make my sself better and realize that life has dished me alot but guess what regardless I am alive!!!! Hope you all enjoy..if not screw you!!!! (lol)

Have decided I think?????

I think that I am gonna start back on the Rebif. I think I can handle it till the 13th of January which at that time I am going back to my favorite injectible Avonex. It is my favorite because #1 it is painless, #2 it is once a week!!!#3 it doesn't seem to interfere too much with my life,#4 I get NO side effects!!!! So tonight will be the first night back on this stupid Rebif shit. Oh joy not really looking foward to it at all.

Tomorrow night we go to my Mom's house and exchange gifts. I always love going there. We used to all spend the night there x-mas night and have Santa come there. That changed when my mom acquired 6 grandkids and another son (my hubby). It was always soooo nice though. i'll never forget my Quorry's first x-mas with my family. He cried so many tears of joy. My mom got him everything that he wanted and he said it was his best x-mas ever. He definitely had a very rough childhood. Hid Dad beat the shit out of him all of the time and you see he was the oldest of 6 boys so that meand he was the babysitter. It was defintely hard on him his borther Zachary had CP that was hard on him trying to be the parent to this poor little boy. Zachary passed away 2 years ago at the age of 12 almost 13. It tore my husband apart. I felt for him so much, the funeral was very hard on everyone!!! So I feel bad sometimes and watch what I say about my childhood. I had that "perfect" childhood. Mom always home when I walked in the door from school and Dad home after work. My childhood was wonderful wasn't beat wasn't made to feel like I don't matter like my husband was. I feel horrible for him. He is doing a great job at being a father. He is terrified that he will be just like his dad and beat the kids. He had never even spanked them I don't thin. I take care of the majority of the discipline. When I am at my wits end I will ask him to step in and help. I just am gald that he is happy now. He says he has the best life anyone can ask for 4 great kids and a great wife.

So I end this with a Very Merry X-mas to all and to all a good night!!!!

Tuesday, December 20, 2005

Blah blah blah......

That just about describes my last few days. I have just been so run down and so damn tired. The weather here today is just awful but has been pretty okay for the last week so can't complain too much now can I?? Afterall I do live in Western New York. At least the temps. are supposed to be up for the holidays and the weather is supposed to be great on x-mas eve which is the only day we go anywhere. My first set of in laws come here for x-mas on x-mas day which is nice considering we have 4 kids to drag out. My other set of in-laws we try to get there the day after x-mas so for now that is the plan and the weather is still supposed to be okay and we have 4 wheel drive for a reason!!!!!

I have been feeling pretty good as of late. Maybe the holiday cheer who knows?? I am a little apprehensive about going back onto the Rebif (No damn it I haven't started back up). I guess because this summer I was on NO medicine at all for the MS other than symptom management meds. I felt better then I did before the MS as I am slowly starting to feel now. On the other hand I'm terrified to not take any MS meds. So what do I do??? I hate being the one to have to make life changing decisions like this. The thing is this decision influences everyone in my life lives. That makes it all the more difficult. I was thinking maybe I will start back on the Rebif tomorrow night. I only have to make till January 13th which is when I go back to my Neuro's office and can go back on to Avonex. Avonex is my favorite of the CRABS. Who knows I will let ya'll know tomorrow what I have decided...........

Sunday, December 18, 2005

this is an audio post - click to play

Friday, December 16, 2005

Just wanted to update a lil......

I am feeling a lil less pain now thank god. Thought that I NEVER would have relief, but alas have minor relief. I found out yesterday when I got my 'roids that the only way my medi-port can be used is if I take my shirt off. What the fuck?? Or I can wear a button up shirt and pretty much not button it. Hello I'm far from the type of person to wear button up shirts. I am a jeans and t-shirt kinda gal. So I'm pretty pissed at the surgeon for making it this way. I was awake for most of the surgery I heard them discussing the complications and the fact that they would have to move it from the original planned site. I did not know that they were gonna put it in betwen my frekin tits!!! The original placement was supposed to be on my left side right under my collar bone. So tell me how it is not placed about 10 inches further down on me and not on the left either migh I add. But rather right damn in the freaking middle of my freakin chest!!! Oh ok think I'm done bitching..well nope forgot a few important things about the placement of this damn thing. I am a sleep on my right side kinda girl but can't do that comfortably..wait a minute can only comfortably sleep on my back which by the way to me is far from comfy!!! I'm afraid of how it is gonna be to be intimate with my husband. That sucks as it feels like forever since we have made love and I'm afraid to even try afraid of the pain!!!! Oh this sucks so bad!!! K done bitching for today anyways...

Tonight we are having deep-fryed-mania-gain-20lbs night. We meaning of course my family that lives here, my mom and dad, my brother, and my father-in-law. I'm making restaurant style chicken fingers, battered mushrooms, battered mozerella sticks, onion rings and french fries. I'm sure some of us will gain weight what do you think?? Then after we eat we are going to play Texas Hold 'Em again. We have been having "tournaments" for the last 2 weekends. Fun to say the least. I think the earlest we have gotten done is 2 saturdays ago and that was at like 11 p.m. Only reason it ended so early is because my mom had to work at like 8 in the morning. Every other time the earliest was I think 2a.m. It is an addicting game let me tell ya. So I can't wait. I can tell you though that tonight will be a very early night for me I might have to purposely go out at some point. I had my 'roid yesterday and was cursed with the insomnia part of it big time got maybe an hour of sleep?? The good thing about the blessed 'roids is I finally had no problem eating and that was nice!!!! I should probably lay down and take a nap as Kaylee is sleeping.............

I'm just a simple girl from WHY do I have MS?????

Why do they look at me

like I have no name
Why can't they just see me
as a person to them I am the same

Why do I seem different to some
because I can not walk
Why do they think I am "dumb"
I have a voice I can talk

Why me?
Why not them?
why me?
why not her why not him?

I can tell you why
I am blessed by this god of mine
because I am strong the truth not a lie
I'm different from them because I'm protected by the divine!!!

Amanda Sue France
Copyright ©2004 Amanda Sue France

Wednesday, December 14, 2005

Yesterday was my follow-up appointment with the surgeon that did my surgery. Okay I guess what they (dr's office) called it was a post-op. appt.. What a freaking joke it was there yet again just like my first appointment there. Had to sit in the waiting room again for like 3 hours and then another hour in the examining room. To piss me off to no end I had a lot of questions and concerns about my chest and after waiting all of that time I didn't even get to ask the questions that I wanted. He came in the room tore off the bandages and I asked him one question he says well that's normal and rushed out the door. Let me rephrase the he tore my bandages off to he ripped them and most of my skin off with least that is what it felt like. I was laying on the table crying..well more like bawling because it hurt so bad I felt it tear the stitches along with the adhesive. It hurt horribly!!! So glad that I am done with this so called doctor. It is nice to have the bandages that I am allergic to off of my skin that is for sure..but the itchiness is far from gone because now I have the itchiness of healing (nasty,gross,stomach turning) scars. It still hurts and I was actually starting to either get used to the pain or the pain truly became less not sure which but didn't care because the pain everyday had subsided a lil more than the day before. then he rips the bandages off and let his intern and the nurse poke at my medi-port site so that they knew what it felt like. SCREW them!!! Why in the hell do they need to know not like they will ever be seeing it on me again or will have the need to use it. So if you can not tell I'm a little pissed off at him and so extremely happy that I do not have to go there ever again.

Today I'm getting my monthly iv infusion of my steroids. Which I usually look foward to but not today. I have noticed that they don't do anything for me aside from leaving the horrnedous mtal taste in my mouth for a few days. I just don't feel like they are working for me the way they used to. I have pretty much for a solid year or better been getting the 'roids every 4 weeks. Before that I would get them every time I relapsed and I miss that "goodness" I felt afterwards. So Happy freaking Birthday to me eh?? WHo the hell wants to get poked and prodded with a needle praying and hoping that they can find a vein for a medicine that you feel doesn't make you feel any better??? I certainly don't. They can't use my medi-port until next week and I am a lil afraid of letting them as it is still sore to the touch of even my shirt on it now that the bandages are off.

On a more positive note I am 99.98% done with Christmas shopping. I have to get stocking stuffers and wrapping paper (Dave you are not the only one slacking on the wrapping part). Then I will be done with my kids. Leaves me only to my Dad and my Brother. Then I am officially DONE!!! Feels nice too!!!!

Tuesday, December 13, 2005

I've been Tagged.......

Okay I've been tagged by mdmhvonpa
I need to Name 5 Weird Habits, and then tag 5 people after I'm done. So here goes.....

1) I don't brush my hair for any reason wash, blow dry then go au naturale
2) I scrub my toilet up to 10 times a day sometimes
3) I avoid going outside to the best of my ability as the nature crap drives me nuts!!!
4) I shower only at night unless I leave that day which per #3 I try not to do
5) I do laundry even if it means I have to search high and low for dirty clothes (Ithink I'm obsessed with wash)

Ok I guess my weird habits aren't all coming to me right now...but I'm sure as soon as I post this they will all coming rushing my mind with full force. Now I'm to tag 5 people..I will try my I don't think I know 5 other bloggers that aren't already tagged but I will try...ok just realized that I only know 2 others that aren't tagged already :( (Sorry mdmhvonpa)

Tag you're it..... Jade Brandi

Friday, December 09, 2005

it has got to get better...doesn't it????

Please tell me that it has to get better. The pain is so unreal. Mostly my fault as somehow someway I "forget" and bend down,bend over, pick up something, pick up someone and then shit I definitely remember. For example I was just giving Kaylee a bath and she was being a lil brat about the whole ordeal and stupid me bent down to wash her hair and bent down the wrong way and way too far and <<>> I was in tears it hurt sooooo freakin bad. Everyone keeps telling me that I should call my surgeon because it should not hurt this bad still. People on my MS Facts message board who have had the same operation. I did by the way call my surgeon on Wednesday to tell him that the pain pills weren't doing shit for me so he told me to take 2...well taking 2 put me in even more pain because of the puking it caused. I see him on Tuesday anyway and he can look at it and hopefully everything is the way it is supposed to be.

Have to go soon really soon and finish up my x-mas shopping. Normally I would be looking forward to that except for the fatigue and the pain in my chest and legs is unreal and I don't even wanna get dressed. Oh wait I only really get dressed when I am gonna go somewhere. Normally I am in "lounge mode". I did get in the shower yesterday got over my fear of the pain from it. I was in for so long used all the hot water. Let me tell you a shower has never been more appreciated. I feel like a real human again. I am now a lil doped on 800mg of "magic pill" and 2 of Darvocet (which I hope don't make me puke and help take away the pain) so I am gonna retire for the night.

Dave if you read this before the jump best of luck to you. Have a great time and remember all the good you are doing for all of us!!!

Thursday, December 08, 2005

Can anyone answer my question?????

Why in the hell did I want this surgery again?? I was unaware that the pain would be this tremendous. The surgeon did inform me that I would be in more pain than the norm. Oh lucky freakin me!!! Why is it when there is a small chance percentage on everything I fall into that grup of people that get the "rare" side effects???? I think I would much rather have my veins blown once a month than deal with this damn pain anymore. The pain pills had me up all night Tuesday, all day yesterday, and all night last night. They were making me puke. It sucked and I had absolutely nothing in my stomach. The last I ate was dinner Monday night because I wasn't allowed to eat after midnight monday or drink. So now all I can handle is some liquid. Food just scares me to death don't wanna be sick again it hurts to much to puke. It hurts too much to even get up from a sitting position..hell it just hurts to move period. I hate it!!!!

It sucks big time also that I am allergic to any kind of adhesive so the "tape" that they have over my bandages is driving me crazy from the itching. I would show pictures but don't wann gross anyone out it looks nasty(plus you can see my breasts on the main insicion LOL) So Tuesday I go back to the surgeons office and get these bandages removed. Right now I feel like a complete scum because I have not showered since Tuesday morning at 2 am. I am just too scared to get in the shower afraid it will hurt and I am not too steady on my feet and when I am up feel as though I will pass out. Eating something will probably solve that problem ya think??

Tuesday, December 06, 2005

sore as hell that is for sure......

This is gonna be short and sweet. Just got home from the hospital after surgery. Let me tell ya it hurts sooooo bad. I have 2 incisions in my chest. There were some complications the doctor was having a hard time feeding the catheter through my body. He said I was tough to get through. So just wanted everyone to know that I got it done and that I am fine. Just in immense extreme pain!!!!!

Thursday, December 01, 2005

As promised......

Here is the puppy his name is Buddy. Not the greatest picture but he is soooo cute!!!

Rebif still YUCK.......

Where to start? Tuesday had my appointment at my Neuro's office with Marge the N.P. She initially left it up to me to choose the next step. Well duh it is MY body, MY health, and MY decision. So I explained to her about the headaches that started just as that, and how they have seemed to progress fairly rapidly into migraines. She asked me if I had that problem while on the half doses of 22mcg. Told her as far as I can recall no it didn't I don't think there was even a headache while on half dose. So Marge said that I could either go back on to the Avonex ( hallelujah) or try the 22mcg doses again ( oh man ). I said well as much as I hate and I mean HATE Rebif, I do trust Dr.Garg with my healthcare and she (Dr.Garg) wanted me on the Rebif for a reason so I suppose that is what I will reluctantly continue with. I told her if I get the headaches with that I will quit. She said ok I will see you in 6 weeks and we will see how things are going then. If by then you are still having the problems with the Rebif we will put you back onto the Avonex. She made me promise her that I would go back into this Rebif shit with eyes wide (and mind)open. So I am going to do my best to try that. She also gave a prescription for Relpax and said that should help a lot too. So we shall see. Last night should have been my first 22mcg shot again and I chose (foolish I know) not to do it. I just want to know that if the half dose does give me a headache/migraine that I can safely take something even if not the Relpax. I can not even take tylenol until after my surgery. That kind of sucks but what are you gonna do??

Yesterday at my Primary Care Doc. was just basically an everyday sports type physical. I could not understand why everyone that works there was looking at me funny until Libby that is her name she is not a dr. but a Nurse Practioner told me why. She said oh Amanda you look sooooo good compared to the last time I saw you. I was thinkin what in the hell is she talking about and then asked her almost those exact words. She said the last time we all saw you you couldn't even walk and you looked very sickly. Then it dawned on me the last time that I did see her. It was only April but I was really bad and wheelchair bound at that time. But you have to remember that was also 5 Novantrone treatments ago too. The miracles of Chemotherapy!!!! So that gave me a lil boost that I needed.

Now onto my mental problems. I think maybe that I am going crazy?? I can only describe it as I am on the edge of the cliff and everyday I am being pushed closer and closer to falling off. I am a wreck but trying to hold myself together. So far not doing that great of a job in my mind. But my mind is sooo messed up right now. Why I have not a clue in the world. I do know that yesterday while in the shower I was bawling which has been an hourly occurrence the last few weeks I asked god to please help me get through this to get some of the things that are bothering out of my head one at a time so I can deal with this before I do something that I might not live to regret. What I mean by that is I have been seriously trying to contemplate the easiest way to end it all..the easiest way on ME!!! How selfish is that when I have 4 beautiful children that need me. I am by the way dealing much better today. In my heart of hearts I know it is because of God. So I took the time a lot already today to Thank him for helping me. I also thanked him last night when I felt as though I was starting to break through this.

As far as the things with my husband. I know that he did lie to me about being at work on Monday. Ok well he works with and for my father and I had called my Mom Tuedsay and my lil brother answered the phone (he also works for my father). I said why aren't you at work he said I'm sick. I said so just Dad and Quorry today huh that oughta be fun. He said well it was just me and Dad yesterday because Quorry called in. That pissed me off soooooo bad you don't even know. Not so much because he called in and did not tell me but first when he "got home from work earlier" I said wow you are home early. He said we weren't busy is all. Hello that would have been the perfect chance for him to tell me that he called in wouldn't it have been?? I think so. Not to mention that he got dressed for work I told him have a good day all the things I do every day. He called in before he even walked out the door and didn't even tell me. Yes maybe to some that is kinda of a stupid thing to be as pissed about as I am. We are married and we are supposed to be honest and faithful to and with each other. Well so far let's see I am so honest it disgusts me I tell him everything and I mean EVERYTHING even stuff I know he could give a hist less about. Also I have been 100% faithful to him never even had a thought or want to be intimate or close to another man. Well he betrayed me in the 2 most sacred ways of the marriage bond. He lied to me about work Monday lied to me for 9 months about sleeping with my best friend. So you can see why I get a little messed up in the head when he is stupid like this. I kicked him out of my house for a while when I found pout that he slept with my best friend, and once I let him back our marriage became very strong and a lot more happier. I know you might not understand any of this but it is true. So now with no explanation as to his whereabouts monday from like 8 until 4 I start to get paranoid and all those hurtful feelings I had when he cheated came rushing back to me full force and I guess really messed me up. So for now I'm not sure what to do with this (shamble) of a marriage..if it is a shamble. I'm soooo confused. I do know that I love him more than anything...........
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