Home from Hospital

[CookieCat]

Thank you for all the welcome home wishes....

It is good being home, but also soooooo damn hard. I am absolutely exhausted. :yrolleyes: I only have a couple of days to get everything organized for my vacation and I just can't get much done before I fall into a heap. I ended up in tears last night because I was so sore and aching and I felt sick and it all just seemed too hard. I got so worked up I disconnected my feeding tube and threw it on the floor - just couldn't handle it. :blush:

I got discharged with only 4 tablets of my super anti-nausea pills - if I want anymore they are gonna cost me $25 each! Back to square one. I save them for the days when I can't keep anything down and just go back to chucking up other times. I have some milder anti-nausea meds, but they only really take the edge off it.

I just feel so overwhelmed at what I've got ahead of me. The docs want me to gain 20kg! My goal weight is 48kg - I haven't been that in years. Even before I went downhill I was maintaining OK around 43kg. So 48kg seems impossible to me right now.

My discharge letter was, as I thought, 'interesting'. At least the intern who wrote it was reasonable and gave me the benefit of the doubt, but it's not nice to have to present it to the doc my sister goes to and to risk having them think badly of me. It does look probable that I was given outside insulin at least a couple of times that caused the low blood sugars - they suspect I did it myself, but I know I didn't. They just don't want to admit that the staff could have got things wrong because I could sue them. I don't think I am ever going to prove it. I don't really want to sue them anyway - I just want the docs to believe me!

Sorry I haven't been all that supportive to everyone here lately. I do read your posts and feel for you all and what you are going thru too but I am so damn tired. I hope things get better for you all too - especially Kello and Soup and Colt and Pen and all the newbies who I haven't welcomed but I really feel for. I will try to get around to it when I get to my sister's place and things are a bit calmer hopefully.

 

[jed]

sent you a PM lil one!

 

[catfud]

Hey cookie don't worry about not being able to give as much support as you'd like with CD you give what you can when you can and if anything YOU are the one that is in need of support right now.

It's probably going to take some adjustment to being at home but hey at least you are in your own surroundings and your own bed! Simple things will tire you out and no doubt now you are home there are lots of bits you want to get on with just take a little at a time. Things will get better with time.

Thinking of you lots of HUGS and Support.

 

[AIjen]

Glad to hear you're home Cookie! Sorry to hear how tired you are and ill. It's a rough adjustment to come home after such a long hospital stay. I do hope you are feeling better soon and all this nonsense about insulin gets taken care of soon. Like you'd want to make yourself feel worse..............duh! Take your time with your vacation planning - little steps at a time. Planning for a vacation is stressful enough to "normal" people! Little steps. And plenty of rest in between. Good luck!

 

[kello82]

oh heyy i didnt see you had started a new thread and was wondering how you were getting along at home.
like catfud said, dont worry at all about "not supporting". we all know what its like to be damn tired, like you said lol, and just by being here in spirit youre being great support

i know what its like to have to pack and everything straight out of the hospital. last year for thanksgving my dad brother and i planned a huge trip to hawaii. of course the week before we left i landed in the hospital and then finally in the OR less than 48 hours before our flight. i ended up taking a flight by myself a few days later (many funny stories from this experience btw).
anyways, yes the organizing is an incredible task and falling into a heap might just be inevitable. i hope that once you get to your sister's you can just WHEW and let everything go and let some people take good care of you

huge huge *hugs* coming your way

 

[CookieCat]

Thanks for your messages and for understanding why I haven't been about much. I have been reading now and then, but I am so incredibly tired I can't think to post.

I arrived at my sisters OK but the trip was exhausting as it was a midnight flight and I had a long wait to get a connecting flight. Really happy to be here though. My sister and her hubby and my niece and nephew have all been so welcoming. I've got lots of hugs from the kids - it's really healed my soul.

I even got out shopping to get a few last things for Xmas - yeh, it was in a wheelchair but it was still great to get out for a while.

I had my MRI enteroclysis yesterday at the big hospital here. Big isn't the word - it is gigantic compared to the one in my home town! :eek2: I got so lost trying to find the MRI Department. The test wasn't very pleasant - I got a huge bag of the barium contrast that I love so much (NOT!) poured into my belly via my PEG and a cannula wacked into my arm which hurt like hell - unusually so for me cos I am quite used to them. And then there was all that lying still on a hard surface feeling absolutely freezing and being asked to constantly hold my breath to the point I felt like I was going to pass out. Still, I am glad it is done and it wasn't the worst test or procedure I've had done by far. Don't know the results yet - they are going to be interpreted by the specialist docs here and then sent to my gastro doc back home. So I won't know till about February... ughh! I hate waiting!:ymad: :ymad:

But I am trying to just forget about it and concentrate on getting well now. I'm still feeling pretty rough. Very, very achy and I feel so drained. No wonder really considering that this last week since I got out of hospital has been one of the busiest weeks I've had for months. D'oh! So much for resting up and relaxing after 5 weeks in hospital. :ybatty: But I should be able to slow down a bit now - got pretty much everything done in preparation for Xmas now so I can take it easy.

Kello, your trip to Hawaii sounds like it was really tough. Good on you for still going though! We can't let this rotten disease steal our lives away completely, can we? Even if I am tired and sore and have had a couple of bad days with my tummy (prob. from the stress etc.), I am still so glad I came here. Every time I get a hug from the kids, I feel I am healing inside of me just that little bit more. :wub:

I will try to post a bit more now that things are starting to settle a bit. But just know that I am thinking of you all even if I don't reply on your threads OK?

 

[kello82]

yayy glad to hear that your trip went ok and that youre now with youre family.

5 weeks in the hospital :eek2: i just read something in Readers Digest that said for every day you spend in a hospital plan one week to recouperate.
for you thats......uhmm.....35 weeks?!? half a year WHATT how does that work out.
i certainly hope you get all your strength back wayyyy before then lol!

happy holidays to you and your family, cookie!

 

[heartofwisdom]

Cookie,
Bless your heart!

I'm so sorry you are having such a hard time. Unbelievable your meds are so high.

I will be praying for you. Hope you have a Merry Christmas in site of your weakness.
Blessings,
Robin

 

[CookieCat]

Hey everyone,

I'm still around and I've been checking in and reading here every now and then but mostly been too tired and busy to post.

It means a lot to me that you guys still think of me even if I haven't been around.

I had a great Christmas - quieter than usual because I wasnt with the rest of my family but I enjoyed the time with my sister and her family. My nephew was such a cutie! He seems to know when I need hugs and comes up to give me them.

I have been out a bit - just shopping and for a couple of drives. Even things like that leave me exhausted. It's good though 'cos it takes my mind off things and I have been sleeping better.

Going home next week - wish I wasn't in a lot of ways. But I've gotta face the music sometime and I miss my family back home.

I haven't got anything big planned for tonight - we are just going to play a board game I think and have a drink to welcome in the new year. I am planning on having one small tipple - alcohol doesn't mix too well with my meds so I don't really drink that much. But I do enjoy strawberry baileys cocktail - yummy but very naughty (baileys irish cream doesn't really go with a lactose free diet lol!).

Looking forward to the new year. Hope 2009 is a happy and healthy year for everyone on the forum.

Lotsa luv,

 

[jed]

you look after yourself lil one!

 

[kello82]

hey cookie!

hope you had a good new years and enjoyed your baileys keep getting better!