~*~Amanda~*~'s Journal
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December 04, 2008
Blah!
I find myself pulling away from everyone again. It just seems like everyone is being fake. Maybe it is just me I don't know. I have been being over come with such an anger about being sick. It just seems to be so never ending. I'm doing everything the doctors tell me to do and yet nothing...I'm not feeling any better or am I, would it be worse with out the medication...Do I really want to know? It is beyond frustrating! Thanksgiving Night is when it all hit me hard again. All I ate was a bit of turkey and some mashed potatoes which I made so I knew it should have been ok. I didn't eat much because I didn't want to feel sick...Them like a truck it hit me all at once. I was up all night sitting on the toilet with one of those lovely pink basins they give you when your in the hospital clenched in my hands as close to the toilet as I could get. Absolutely tired because I haven't been sleeping. I was just praying to finally vomit or something but of course not... it took two hours for that to happen then when it finally did it didn't relieve the burning or pain I was having. The hardest thing is feeling guilty for being sick. I try to be super quiet so I don't wake my husband or the kids, so sick yet still so considerate. I decided to double up on the vicodin because it go to the point where I grabbed a pillow and curled up on my bathroom floor and thats where I layed in pain. The vicodin didn't seem to do much but it took the edge off I guess. Of course I love my three beautiful children but it is so hard being a mother being so sick and having no family or friends here to help with the kids when I am this sick. My husband had to get up and go to work and that means that no matter how terrible i feel that I am up out of bed attempting to act happy through the pain and bathroom trips. I guess I just start to feel like such an indaquate person. My 6 year old isn't stupid and I really see how much it effects her even when I do my best to make sure it doesn't. She tells her teacher and her friends that her Mom is sick and how it makes her sad. I was getting her ready for school yesterday morning and she says to me "Mom it is ok you know I can do this by myself. I am a big girl. I know your sick." She has always been really independant but I like helping her. I want her to see that I do care enough to get up and make sure she has her lunch and her snack for school and that her folder is in her book back and that everything is all ready to go for her to have a good day. Then my husband things his jokes are going to make me feel better about being sick. He said I appreciate you trying to be so quiet when I know your up and running back and forthe to the bathroom...but I wanted to just tell you to shut up and stop crying... and he laughed and said you know I am just joking. Oh boy did he hear it for that jokes or not...I didn't find it amusing. I am like one of the only parents that can't go into there childs class to volunteer. It makes me feel horrible! I want to go into her class and sit down and make it through the day to help them with the stuff they do. I went in one day and I couldn't even make it through an hour. I was so embarrassed!
I am usually in such a great Christmas (Holiday) spirit by now and I really could careless. If it wasn't for the kids the tree wouldn't be up and the house wouldn't be decorated. On top of being so sick I just miss my grandma and my parents.
Sorry this is so long I just needed to vent. If you made it this far..thanks for reading.
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August 28, 2008
Serenity has been lost
I think that lately I have realized how much of a pain in the butt I am to my family and I hate it. I have severe crohns attacks I guess I will call them out of no where and it just ruins everything. Monday my husband finally had a day off of work after working three 19 hour days in a row. We were all thrilled he had planned on sleeping in late to make up for his lack of sleep the previous days. That changed at about 5am when I woke up in a severe sweat and running to the bathroom with diahrea and vomitting. I thought wow maybe i'm sick and then I was like no its the darn crohns like it has been the previous week and all the other days before that. I mean I have the daily diahrea and pain but when you throw in the vomitting and the more intense pain and more diahrea its just one of those things where I sit and wish that I would just die so I didn't have to deal with this anymore. Since this lasted all day and my husband had to get up early with the kids we had to of course cancel our trip to the beach. My husband wouldn't have been able to have all three kids in the water especially with the baby only being 10 months- a 2 year old and a 5 year old. He didn't want to risk it nor did he want to leave me at home alone. I figured ok this week I should be good the worse of it is over...I'll be ok until next week. Since that has been what the pattern has been like but no of course now. I was still feeling under the weather more than usually the next days to follow and Wed. it hit me again. It came on even more suddenly than the other times. I couldn't even move once again because it hurt so bad. Once again my husbands day off and I ruined it like I always do. I had to hear my 5 year old cry once again because Mommy is sick and we can't do what we wanted too. It breaks my heart. I love my children more than anything in this world and sometimes it seems like I am doing them more harm than good by being here. She wasn't really upset with me but more the fact that the beach got cancelled and chuck e cheese got cancelled. My husband did end up taking the girls with him and I kept the baby here since he is easier to deal with. He is content playing in his pack n play for short periods of time with the right toys at his hands. They went to Altoona which is about an hour away maybe a little less and they got to go to the auto part store with there daddy and spend time with him.
Ok I got that vent out..now on to part 2..lol
I have gained so much weight that its pathetic. I hear how most people are losing all of this weight and stuff...I'm not eatting and when I do its not much. Yet I still gain weight. I don't have the energy to exercise much and even just walking through the grocery store wears me out. I don't think my husband really understands the degree of what i'm going through. I really wish he did. Most people gain a few pounds here and there but i've gained almost 100 pounds!! Yes thats not 10 pounds! I had lost nearly 50 pounds in about a month then I got put on all of my meds and its just piling on and nothing is helping. I don't have the energy or strength to go exercising. I can't eat fresh fruits or raw veggies. Just when I start to feel like I can do this..I can deal with all of this. I feel like I've been kicked down and I just don't want to deal with it anymore. -
August 06, 2008
UGH!!
Ok, I am having crohns symptoms like mad...my dr says he isn't seeing anything..My body is telling me there is something major going on. I can not take it anymore! I'm tired of meds and feeling worse than ever. Has anyone ever had this issue..Its worse than before I had my surgery yet "theres nothing there!" I made an appointment to go to the UPMC hospital in Pittsburgh and hopefully they will find something. It just stinks because its about 3 hours away :-( -
May 22, 2008
Rock n Roll!! ---haha nothing to do with rock n roll!
Ok so I completely drew a blank for a title to this blog post. So Rock N Roll is what it became! Saturday I was taking my baby downstairs to tell my husband that I was putting him to bed. I ended up falling down the stairs while I was holding him..my first reaction as a mother is to pull him as close to me as humanly possible so he doesn't get hurt. I suceeded with that part he wasn't hurt. He laughed he must have thought I was bouncing him or something! Anyhow, I broke my ankle and pulled the ligaments in my knee. Go figure as if the crohn's disease isn't bad enough. I go see my doctor tomorrow I had the colonoscopy two weeks ago and the drs visit is tomorrow. I am going to ask him or rather tell him I would like to see another doctor as well. I have been seeing him since Jan..and well I had my surgery in March, Crohns came back agressively within weeks and nothing is helping it. I just want to feel better and he says he says in his 30 years as a specialist he has never saw someone under treatment after having surgery have crohns disease come back so quickly. Anyone know of any good specialist or drs in PA? Pretty much anywhere I don't care as long as I feel better!! Well I need to feed Halen and get him in bed...Or attempt too. Joe is bathing the girls for me so that helps.
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May 13, 2008
Why does life have to kick you when your down...
So I did what the doctor said...I had my first sugery for my Crohn's Disease on March 26th...After the surgery I felt worse. I told the dr a few days later it felt like I was in a terrible flare! He just laughed and said no sweetie..its your body recovering from surgery. Ok I said..that sounded reasonable... The diahrea had increased the pain had spread like wild fire. My joints were aching..at this point I was thinking to myself ok the dr is out of his mind! This is a bad crohns flare. I got home from the hospital waited a few weeks...suffered with intense pain, increased diahrea, vomitting started again and I just enough. I hit my breaking point and called my GI...told him my symptoms and he said to get my butt to the emergency room and have a cat scan done. Well I did this and found out that the Crohn's was indeed flaring and to top it off theres a fistula forming! This was just a couple weeks after surgery! Are you kidding me. Mind you i'm still taking the remicade to keep this into remission. I have a colonoscopy scheduled for next week and my dr just can't believe what is going on with my body. He said in his 30 years of doing this he has never saw it come back so rapidly while on meds to keep it in remission and after surgery no less. I don't know what to do!! I am feeling terrible and this nasty disease is starting to effect my family. My three kids pretty much know that i'm sick all of the time..(well the two year old and five year old) and I can really see that its wearing on my husband. I feel so alone!
