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Supafly


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Date: Mar 3, 2010
Home!
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I know everyone on FB already knows this, but I am home-I was sprung last night.  I am not sure my GI felt it was the right call, but at this point, I felt they had done everything they could there, and that unless there was a significant reason for me to be there for the IV steroids, it wasn't worth staying.  And I felt the longer I stayed, the more risk I had of picking something else up, kwim?

So far I am doing ok.  I am far from remission right now, but things have settled down and my blood levels, while very very low, are holding steady rather than dropping more, so that is good.  I am extremely anemic and weak, so I have to take it very easy (like this morning, I got light headed from having to go back upstairs, so I need to act like I did after the c/s and not do the stairs too often for now), but it is good to be home.  It was SO good to have an uninterrupted night of sleep!

I am going to be on steroids again for a while, which sucks, but I have no choice, so I am trying to just accept it.  The remicade infusions are spaced out a bit, and that will take a while to build up in my system, so I think remission is going to be slow to get to this time, but as long as I can keep my blood counts reasonable, I should be ok.

Tracy, you had asked what the other thing was-what he was talking about doing was something called cyclosporin rescue-I think it is basically an IV treatment used primarily for cancer or transplant patients and is sometimes used for patients with severe UC that are no responding well enough to steroids.

I'll see my GI Friday morning just to check in, and hopefully things will stay reasonable on track while I wait for my next infusion, and hopefully the infusions will kick in and help get me back to an actual remission.  For those who have added me in your prayer circles, thank you so much-I could still use them as I work my way towards full health again!

Needless to say, MSBL is pretty much out for me at the moment.  But I still am cheering you all on, and I KNOW once I do get back to being healthy and off the steroids, i will need to jump back in-I actually lost another 10 pounds, but the steroids will kick in on that soon and I know I will be ballooning back up-UGH.

Ok, this is long winded-thank you all again for your continued support. heart.gif

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Laura
3s_a_crowd


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Date: Mar 3, 2010
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Glad to see that you are home. Continued prayers are being sent your way.

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Supafly


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Date: Mar 3, 2010
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Thanks Tracy. How are you feeling these days? Are things settling down for you? PM me if you don't want to discuss here...

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Laura
Sonya


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Date: Mar 3, 2010
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I am SO glad you are home, Laura.

I'm keeping you in my prayers.



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apies


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Date: Mar 3, 2010
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so glad you are home laura. you've been in my constant thoughts. heart.gif

please keep us posted as to your progress.

how happy were the girls to see you!?!? heart.gif

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3s_a_crowd


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Date: Mar 3, 2010
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Im confused on if IM doing better or not LOL. IM in the bathroom less. One time or so one day and 3-4 the next as opposed to 6-8 I was going.

However things arent as good when I go.

Im also breaking out and losing my hair lol, so who knows.

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sbucking


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Date: Mar 3, 2010
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It's great to hear you're home! Praying for remission!!

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Alison


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Date: Mar 3, 2010
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I'm so glad you're home, but I wish it was because you were all better!  Please keep us posted.

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Supafly


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Date: Mar 3, 2010
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apies wrote:

so glad you are home laura. you've been in my constant thoughts. heart.gif

please keep us posted as to your progress.

how happy were the girls to see you!?!? heart.gif



They were definitely excited!  Anna is kind of treating me with kid gloves though-I think she is afraid she'll break me or something!  But Kate just wanted to be picked up and held as soon as she saw me-it was sweet. heart.gif  I missed them so much!!!!



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Laura
Supafly


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Date: Mar 3, 2010
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3s_a_crowd wrote:

Im confused on if IM doing better or not LOL. IM in the bathroom less. One time or so one day and 3-4 the next as opposed to 6-8 I was going.

However things arent as good when I go.

Im also breaking out and losing my hair lol, so who knows.



Well ugh.  I mean, I am glad you are going less, but that isn't good that things are worse when you are going.  Are you having more urgency?  Mucous?

Breaking out and losing hair is no good either.  The pred is starting my acne already, so I definitely feel you on that one.  And once I taper off of it, I'll lose half my hair again too, so we can commiserate there!  What do you think is causing the hair loss and acne?

What about your weight?  You aren't continuing to lose, are you?



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Laura
Supafly


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Date: Mar 3, 2010
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Thank you all so much for your support and prayers! I am definitely feeling a lot better than I was a couple of weeks ago and hopefully it will just keep getting better from here.

I guess it is good once in a while to let other people take care of you, huh? I tell you, I truly am blessed to have such amazing friends pulling for me. heart.gif

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Laura
Lizzy


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Date: Mar 3, 2010
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So glad you're home!! i can't imagine dealing with all this...you are definitely a strong person Laura. I hope that you start feeling better soon.

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Juanita


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Date: Mar 3, 2010
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I'm glad you're home.. thinking and praying for you

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3s_a_crowd


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Date: Mar 3, 2010
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Supafly wrote:

3s_a_crowd wrote:

Im confused on if IM doing better or not LOL. IM in the bathroom less. One time or so one day and 3-4 the next as opposed to 6-8 I was going.

However things arent as good when I go.

Im also breaking out and losing my hair lol, so who knows.



Well ugh.  I mean, I am glad you are going less, but that isn't good that things are worse when you are going.  Are you having more urgency?  Mucous?

Breaking out and losing hair is no good either.  The pred is starting my acne already, so I definitely feel you on that one.  And once I taper off of it, I'll lose half my hair again too, so we can commiserate there!  What do you think is causing the hair loss and acne?

What about your weight?  You aren't continuing to lose, are you?



 Theres definitely more mucus, but could be because of how Im eating. Dh is gone and the kids are super sick so its everything I shouldnt eat, cheese and chocolate LOL. Ravioli, ice cream, cheese and crackers, are all my go to foods. Im actually starting to gain weight finally staying above the 100 mark for a few days now.

I think the cortifoam is breaking me out and I think the canasa is making my hair fall out but who knows. My mood is lower than normal but I dont know if thats a side effect or dh is gone while the kids are sick and Im trying to get all this therapy started for Raym and its def. stressing me out on how much is too much for him, for our other kids, our family.

I just want to sit and cry and nap all day the past few days(waking up at 330 this morning didnt help matters.)

Sorry to have turned this into a vent about me thread. I hope your feeling tons better.



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Supafly


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Date: Mar 3, 2010
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3s_a_crowd wrote:

 

Supafly wrote:

 

3s_a_crowd wrote:

Im confused on if IM doing better or not LOL. IM in the bathroom less. One time or so one day and 3-4 the next as opposed to 6-8 I was going.

However things arent as good when I go.

Im also breaking out and losing my hair lol, so who knows.



Well ugh.  I mean, I am glad you are going less, but that isn't good that things are worse when you are going.  Are you having more urgency?  Mucous?

Breaking out and losing hair is no good either.  The pred is starting my acne already, so I definitely feel you on that one.  And once I taper off of it, I'll lose half my hair again too, so we can commiserate there!  What do you think is causing the hair loss and acne?

What about your weight?  You aren't continuing to lose, are you?



Theres definitely more mucus, but could be because of how Im eating. Dh is gone and the kids are super sick so its everything I shouldnt eat, cheese and chocolate LOL. Ravioli, ice cream, cheese and crackers, are all my go to foods. Im actually starting to gain weight finally staying above the 100 mark for a few days now.

I think the cortifoam is breaking me out and I think the canasa is making my hair fall out but who knows. My mood is lower than normal but I dont know if thats a side effect or dh is gone while the kids are sick and Im trying to get all this therapy started for Raym and its def. stressing me out on how much is too much for him, for our other kids, our family.

I just want to sit and cry and nap all day the past few days(waking up at 330 this morning didnt help matters.)

Sorry to have turned this into a vent about me thread. I hope your feeling tons better.

 



OMG-don't worry about it-you know I am thinking about you all the time and praying that you are feeling better.  I may have you beat on the blood loss, lol, but that doesn't make your life any easier to deal with.

Are you having any trouble sleeping?  Steroids, even rectals, can cause sleep problems.  I am currently using benedryl at night so I can actually get some rest.  They prescribed ambien if I need it, but I'd prefer not to use it.  But not getting enough sleep is SO detrimental, so try and get as much rest as you can.

I'm not sure how you can reduce stress-you definitely have a lot on your plate right now.  But is there anyone who can help you out?  Give you a chance to just rest or relax, or bring you some food?  And go ahead and have a good cry-we all need to do it, and it might help get some of that stress out.

It makes me ache that you aren't feeling better.  I wish there was more I could do for you-knowing how miserable it is to live with this, I just wish I could snap my fingers and get you back into remission and feeling good.

I can't comment too much on the diet though-I can't seem to help eating things that I know I shouldn't.   But try to eat things that will go easy on you, ok???

How long will DH be gone?



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Laura
3s_a_crowd


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Date: Mar 3, 2010
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supa hell be back saturday so not too much longer. I sleep ok, its the boys that are waking me up. So at least when there better Ill be able to rest more.

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daisy


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Date: Mar 4, 2010
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glad to see youre home laura!

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Sara


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Date: Mar 4, 2010
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so glad you are home.

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crystal


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Date: Mar 5, 2010
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i am SO glad you are home!!!!!!!!!!!!!!

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RedHawk


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Date: Mar 9, 2010
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Laura, I have no idea how I missed this. I've been looking for an update. Guess I'm losing my eyesite. LOL. So glad that you are home. How are you now?

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