I started my Rebif on Wednesday got my first shot in the arm. Fun wow. I was really glad as I did not have any side effects well as far as I know. But the general side effects of this drug like feeling achy and flu like I have been feeling like that for awhile. I have to get another shot tonight. CAn't remember where I'm supposed to get it but I do have a chart thingy that Quorry and I look at. He is more ready to do this shot tonight than me. WEdnesday the training nurse did it for me because he knows every location except for my arms so he watched so he knew where on my arms to do it.I had some rigorous P.T. yesterday my legs are killing me soooooo bad but I suppose it is for my best interest. I am still haveing a very hard time eating and when I finally manage to eat keeping it down is a whole different story. I have this nasty after taste left in my mouth from the steroids and am havin a hard time even drinking and that sucks. There is nothing good to drink I have everything too!!! This sucks.I am so sick and tired of being sick and tired. I have not been sleeping well which I know alot of that is from the steroids. But my god when can I get some ery much needed sleep?????
My life couldn't suck much worse (I hope)
Well maybe that is an understatement or maybe overstatement who freaking knows at this point...not me I don't know much about anything at this point. Today was my 2nd day of steroids not feeling much better yet but trying to look at it all optimistically. The optimism is all I have left in me and even that I have to search very hard to find. The good news is Thursday I start my in home P.T. that has to help me A LOT!!!!Tomorrow I will finally be back on an MS med. other than the chemo. I think that I have decided to stop the chemo (Novantrone). As this last time I was way worse than better after words and am still feeling those effect 3 weeks later. It is freaking scary!!! So I think I am gonna stop it for now..who the hell knows I have no clue what to do for myselaf maybe shen I go back to school ( for free might I add since I am a gimp!!! LOL) i think maybe I'll go into medicine and maybe learn more about my body. Who the hell knows.On a positive note my boys' room is done and looks great. New blue carpet layed Sunday. Which is better than the pink carpet that was previously in there. They have their new walls and of course new beds. They are loving their room a lot!!!
What a long day yesterday....
I called my MS specialists office on wednesday to tell them that since my last NOvantrone things have been way off MY normal. Explained to the head nurse all the things that were and still are going on she said you need to be seen right away. So I made an appointment for yesterday. Oh my gosh yesterday was soooo horrible in a million different ways.
I had to take my daughter with me (she is 2) which wasn't really a bad thing she is very well behaved. My appointment was at 11 with my doc's NP. I told her everything that was going on. She called my doctor who was on the floor making the rounds(at least she said she called my dr.)She then came back in the room and said well Amanda she wants to admit you. None of this is right and we are worried about you and just want to do a few tests and it they turn out ok we will give you steroids and send you home to finish out the steroids. So of course I cried and almost down right refused to be admited.My mom was with me and convinced me to be admitted. So I agreed but they told me it would be like 1-2 hrs. before a room would be ready for me. So my mom, my daughter and I all went and had lunch.
We were back in like a half and hour and still they say 2-3 hrs for a room, so they took us over to the infusiaon room which is more comfortable a waiting room. Then it was just a waiting game as to get a room. Now after being there for 5 yeas 5 hours my mom went to find the only 2 pple left at the doc's office and said we are leaving. You see I did get to see the resident that would be working w/my dr. in taking care of me and she said well there is nothing that we can do for you today seeing how it is so late. So my mom tols the pple. can't she come back in the morning when there will be a room ready???
So the nurse called my doctor and you know what she said...Why is Amanda still here??? I wanted her home hours ago and on some steroids!!!! That NP lied about even calling my doctor scared the hell out of me which in turn terrified my daughter seeing me cry!!! I felt soooo bad for my baby girl seeing me like I was. So now Monday I will start steroids are home and hope that they help. It seems as though everytime I start going down hill I crash way too fast.
This sickness is getting worse....
Ok well I still don't know what the hell is wrong with me... I mean it made sense 2 weeks ago to be still feeling ucky from the chemo but not now. Who knows the diziness has been getting worse and worse everyday. I hate it and the fatigue what a joke I can't stay awake half the damn time. This MS shit sucks so bad. I'm gonna call my doctor today and see that she thinks. Ok so the dizzies are bad enuff but that is not all...my legs are begging for my wheelchair lately. I just got up to switch some of my laundry...oh my god it hurt my legs so bad and was so hard to even walk to my laundry room which is just a few feet from my computer. What a joke I am huh???My father in law came and stole my boys which helps a lot. They are going to the zoo, the science museum today. Then tomorrow they are going to Niagara Falls. So they are going to have sooooo much fun. Andrew has seen the falls before but Brad hasn't so he will be in his glory. Right now Kaylee is sleeping long night last night and she was up way too early this morning so lord knows she needs this sleep.and since she is sleeping I am gonna get in the shower.
My beauty queen
These are such good pictures of my baby girl could not resist posting them
Ok didn't make the baby roasted potatoes...
Ok so I didn't make my m-i-l the roasted potaoes not the chicken..mainly no chicken because we just had that. So instead I (and my husband) made her confetti beef and pepper rice. and OMG everytime we have that it is to die for. She enjoyed it and went home to get some very much needed rest.So tomorrow it seems as though we are going to get working on that nasty bedroom. We def. have to do something soon we have to get the boys back on the school sleeping schedule. and so far with them sleeping in the living room that ain't happening.Today had to go get my 10 day bloodwork for after the chemo. Hopefully that will answer some questions as to what has been wrong with me lately. Not only the MS not being very nice to me I have had the worse case of vertigo ever. While grocery shopping last night it felt as though I was going to pass out quite a few times. that is darn right scary to me. I have even been managing to eat so it can't be that. Who knows I am at a loss as to what the hell is wrong with me.
Here is a pic we took when we went to Niagara Falls sunday. It was so beautiful. Shame I don't go there more considering I don't live but less thatn 2 hrs. away. Brandy was mesmerized by the falls and I am sure she had a great time.
So tired lately....
I have been so tired lately. I am sure the heat has not helped too much with that fatigue shit. I am sure my MS not been too nice to me isn't helping that issue either.I can't wait the kids will be going back to school in 3 weeks!!! thank god things will be much easier and different and back to normal.Last night we had to rip 3 walls out of the boys' room due to cold water pipe from their bathroom leaking. Fun WOW!!! We are going to have to replace the carpet also. Like how in the hell we gonna afford that??? but it has to be done. We have to replace the entire floor wood and all by the wall where the pipe was leaking. What a disaster. So needless to say the boys will be sleeping in the living room for the next week probably.My kids are all picky lil brats. I made sweet and sour chicken and rice for dinner last night. Now mind you that my kids all love Chinese hence the reason I made what I did. But guess what?? None NONE of them liked it. So after making all of them eat some of it we just let them eat plain white rice...How can they like just plain white rice but not sweet and sour chicken???Strange strange kids.Tomorrow I am making my mother-in-law dinner. As soon as she tells me what she wants I can start preparing. I know no matter what I am making roasted baby potatoes. I am just at a loss of what to make for dinner lately I am the one who has to choose everynight.
Been away too long....
I have been away for way to long. so much has happened it is unreal for the most part all bad things have happened.To start...the day after I got home from Wyoming my husband got fired. Assholes anyway!!!My husband applied for unemployment..guess what they said NO!!!He is now working for my dad but it is only temporary. It is not the money that we are used to that is for sure.I was doing better than I have been in the last 4 years. I had my independence did not have to rely on someone else to take me to the store or wherever...but man did that end quickly but it sure was good while it lasted. Just got more chemo on Tuesday and am feeling a lil better but hard to tell due to the fact of this damn heatwave.On a twisted lil positive side note...my food stamps taht we have not gotten in forever just went up to $500 a month that helps tremendously. My Social Security went up to $602...thich pays my mortgage and most of my car payment. So that helps a lot it helps lift stress off of my husband. He feel like a failure..I wish that he didn't. He has put applications in numreous places still no call backs but it is soooo hard to find work here...doesn't make sense to me not with my husband's expertise. He is a well qualified mechanic.Gerrott has been home for almost 2 months and it has been great he is leaving this weekend. Which will be hard on all of us. He is happy because I spent $200 on school clothes for him last night.We are going to Aunt Cheryl's weeding Sat. it should be fun. Quorry is going to look smoking. WE also got him something real nice to wear to the wedding. I just got new shoes because I already bought my dress. We should look good..LOL It is exciting because Brandyand her boyfriend Darius are here today and are going to stay for a week. It will be nice to see her again. I know the kids are excited to see their new found Aunt Brandy. I know Quorry is excited to see here again too, as am I.WE are going to Q's dad's Saturday after the wedding. My mom is keeping the kids for the night god knows that we need some us time no kids no bullshit.
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