I don't want to speak too soon but......

[iwantmypup]

Hi everyone!

I haven't been here in a while! So many posts to read! :)

Anyways, I really don't want to speak too soon..and this isn't the most positive attitude, but I really am not doing well healthwise and I do think I am gonna be in the Hospital for a couple weeks...
I have an infection and I am losing soo much weight..and fast.
I'm just not hungry and I don't have the energy to do lots of things..some days we will go places, but I have to sit down lots of times.
I'm really worried about myself..I mean I don't thing anything super horrible will happen, but everytime I am like this the doctor does say that going in for 2 weeks only works for so long....

Gosh, I hate to sound like I am complaining because there are so many other people with CF and other things that have it worse..but this is just scary to me. I don't know why it's scareing me so much this time either.....I think it just scares me a lot too see myself so sick and weak looking.. :(

And this is so stressful...I don't have a doc appointment until next week...
but the school keeps hounding saying I need to go to school..I mean, I know I need school...I do my work, I still get okay grades...but I just can't do it..I end up calling my mom soon for her to pick me up...I feel like I am not well enough to go...I want to, but honestly, on the weekend I spend almost all my time in bed just laying there sleeping....it's too much energy to go to school when I am not well. Just going to school, going class to class, up and down the stairs...it feels like way too much!!!!!!!!
And homeschooling in noooooo option AT ALL.
So it makes me kinda want to go to the doctor sooner and have them just put me in..just to get it overwith. :(

Anyways, started to rant a bit there....

All I am saying is that I am sick, I think I am gonna be going into the hospital soon, and I wanted to tell you guys.....Hopefully I will have internet acsess. Who knows...maybe they can give me some antibiotics?


:( Have a happy day!

-Ali

[agilityk9trainer]

You might want to give your doctor's a call. They might be able to get you an appt. sooner. I often have to hound my doctors' offices to get in when I know I'm not doing well.

Keep us posted.

[Monkey]

Sorry you are not feeling to well sweetie..

*huggles*

I hope you get to feel a bit better soon..

[melissa2007]

You can get through this Ali, you just need to fight it.
Don't be scared, your doctors are going to make you better, they are here to help us, give them a call and tell them you think you need to go in, you know your body better than any doctor and if you feel you are fighting a loosing battle then let them help you.
Im here if you need to talk, take care hun
just think if you can get past the needles and nasty food the hospital will be like a vacation :)

[sheplovr]

Awww Alie wondered where ya been honey. I know your tough through and through and you will make it. Be postivie sweetie, not negative, fight and win!!!! Know ya can, I am pullin for ya.....:D

[skunkstripe]

Hi Ali :wave2: if you're losing weight then you're not going to have enough energy to get through the day. It sounds like only the doctor can help ya. Rest as much as you can and do whatever the doctor says when you get to see him/her. Maybe a hospital stay will be just what you need.

[Jake2006]

I agree with the previous posts entirely - have you Fibromyalgia as well as CF? You know the most important thing you have to do is to get some quality REM 5 (deep) sleep. Your health is such a personal thing but there are many new drugs for CF/Fibromyalgia. I hope you have a good outcome with your doctor - and remember 'baby steps' - one day at a time. don't try to see the big picture. Most worries are future based and never happen -

[blunder paws]

Oh sweety i so sorry you r so poorly. Try not to worry about school your health is so more inportant. Try to get and see your doctor sooner as if you do the quicker to can start to get better. Stay strong hun and hope you feel better soon.

[iwantmypup]

Hi everyone!

Thanks for all the kind words and stuff! :D
I found out Wednesday that the Appt was Yesterday (Thurs) so I did my meds extra well, etc etc...THEY cancled the appt...again! Argh!
I guess its okay tho...I mean, I am not doing totally better, but I have been resting and sleeping and doing my meds extra well..and I think I can get better. Weight is hard tho..
But we have an appointment next week, so that's good. Also..after me kinda, um...kinda begging...sorta, my mom said she would try to have me homeschooled for a little while. Well she said 'Maybe', so I don't know about that. :P

Jake2006, I don't have Fibromyalgia. But it sure is great that there are many new meds for all of these things! :)

Thanks again everyone! I'll keep everyone updated! :)


-Ali

[Mom to Lil Buddy]

Ali missed your first post, just got back from out of town. Glad you are feeling a little better today. Just keep focusing on your meds, that is the one thing that you do have control of, so stay in control there, because I know there are a lot of other things you can't control. Have you tried home schooling before? Is your Mom opposed to it? or does she just think you would be better off in the school environment? You have a lot of people on your side.

[Spicy_VV]

Sorry to hear this. I'd be just as scared and worried. I hope you come out ok. Just hang in there. Education is important but your physical health is very important.

[iwantmypup]

Hi!

Thanks much! :) All you guys are making me feel better. :)
I have a doc appointment tomorrow....Will update!

-Ali:_)

[Maltese_love]

I know you've been having a problem with your health for awhile. I was like you at one time. I have a heart condition..and I made it through(luckily I was five when I got it over with though.) Hope you can get better!! ((hugs)) Schools are so utterly ridiculous. I wouldn't worry about that, if you are sick it's not your fault.

[iwantmypup]

Hi everyone!!!

Aww Maltese_Love, I am really sorry to hear that. I am really glad you made it through that! :D ((((Hugs)))) Yup, schools can be very ridiculous, luckily I am changing schools next year. :)

Well guys, I do have an update. As many guessed, I am in the hospital.
We had a doc appointment Thursday and since I am doing really bad my doctor wanted to put me in the hospital that same day.
My weight is really bad....I am tall but my weight is not following. My lungs are just..are horrible.
Melissa, you can probably explain it better but my lungs are like...46 percent (Not sure if thats the right word), and I guess at 30 percent they start talking about lung transplants.
So I am working really hard, doing my treatments 4 times a day to get my numbers back up..and to keep them up.

So I will be here for about 2 weeks, and I will try to keep you guys updated:)

Take Care!

-Ali

[skunkstripe]

Geeze Ali, I hope your numbers come back up. I wish there were a cure for CF! :(

[iwantmypup]

Hiya,

I hope so too. Oh boy, if there was a cure, that would be so great! :)

Right now, I just finished my breathing treatments..we tried this new thing called an IPV machine, it stands for intrapulmonary percussive ventilator. I press a button and it likes puffs air into me...and the meds go into my lungs and do there thing meanwhile the pressure of the puffs shakes things up!
We used it with one of my inhaler things (Albuterol) and I did it with this other thing called Hypertonic Saline...it's like really salty. And so I breathed those in and WOW...
I FEEL GREAT! It really loosened things up, and I feel like I can breathe so much better! :)
For once I think that the breathing is going to be easier than the weight!
Anywho, have a good night everyone! :D

-Ali

[iwantmypup]

Hi everyone, just a bit of an update--


So, yesterday I took pulmonary function test, and I thought I did really well. Today the doc came in, and I did actually..but lungs aren't as great as they were before, but they are getting back up. I still have about a week to go!

Last night I totally freaked out because as soon as they medicine went through my IV..I felt kinda burning, but that went away after I asked the nurse to flush the IV line again ( because some antibiotics don't mix well)..whew!

But I am doing good! I gained a bit of weight..I think I can feel it a little too!:)

Well, have a great day..more updates to come!

-Ali

[Monkey]

poor sweetie...
I think she might have given you potasium,.. I got that and it burns so you wanna tear it off from your arm. Either that or your vein is just achy cause of everything.. I know I got that after the surgery. I looked like a crack addict when they were done with me.

I hope you get your energy and strenght back up soon..
*huggles*

[sheplovr]

Awww Ali sorry to hear what you must go through, but if it helps you GOD it is worth every bit. Take it like a tough girl you have been and I will pray for a miracle honey. You fight and hang in there....:)

[iwantmypup]

Hi guys!

Thanks so much again..so great to have you guys here cheering me on!:)

Moo Moo, I think what it was that I am achey. :( Aww but I know what you are saying.
But yup, kinda sore. Thank you, *huggles**!!:D

Sheppy, yup..but it is worth being here. Thanks so much! *huggs*

Well guys, I am doing really good. When I got here, my numbers were at 46 %..they are now in the 70's. I am really getting up there, and fast it seems!

I am tho..kinda surprised at how much blood they are taking from me! I mean, it's okay..because some of it is going to CF studies..and some of it is going to making sure I am okay..but I just hope I have some left! J/k. I know I will. :) :P

Gnight all!:) Thanks so much!

-ali

[applesmom]

It's great to hear that things are looking better for you. Keep doing what the doctors tell you to do and you'll feel lots better before you know it.:)

[Monkey]

awww sweetie.. I so wish you didn't have to endure this...
*big time huggles*
you are so tough, Im so proud of you..

[iwantmypup]

Hi,

Thank you guys so much!
*huggles big time!!:)* Really, thanks yous:)
So I have lots to say..but I'll sum it up:)
I have gained 5 pounds I believe, which is..YAYY!!!
My lungs are still good..they are going to do lots of tests next week..well only about 3.
On monday I have to drink this really sweet stuff, and then they prik my finger, so then they find out if I have diabetes.
On Tuesday, there is a CT scan to do. Just to see whats going on in my lungs
On Wed..or actually Thurs, I have the same breathing test that I did the other day.

So all is well..just kinda stressed, but it's all good:)

Thanks you guys alot!!
-Ali

[April]

I hope you continue to make such good progress. I know what you are going through. My cousins daughter had CF, until 2000 when she had a double lung transplant. Before the op she was skin & bones, her mother was looking after her round the clock with physio & she was on a b-pap machine all the time. After the transplant she asked to see her lungs, but they fell apart.
I saw her last week, she's starting to have trouble breathing again & may need another transplant, but she sure has made the most of things in the years since. She's now 32 yrs old & when she was 1st diagnosed the life expectancy was only 9.
Again, good luck & keep us posted.

[iwantmypup]

Hiya!

Thank you so much!:)

They didn't prik my finger yesterday! I was so happy. But the test went good, results coming soon I hope. Today they woke me up early to do my CT scan. It went good too:)

All is well my friends, hopefully and probably going home thursday!

Aww I am so sorry to hear that. What sucks about CF is that you have it no matter what even with transplants...Not fair! She has lived long for having CF, how great!

Thank you so much!:)