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Post Info TOPIC: Yes, I am asking once again...
Supafly


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Date: Feb 19, 2010
Yes, I am asking once again...
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I'm sorry, I hate to even bring up my health again, but if you ladies could spare some prayers, I could sure use them.

Things are not going very well for me right now.  My mom is taking over getting the girls to and from school and I am barely able to do the stuff in between.  I can't sleep through the night anymore without waking to use the bathroom, still bleeding a lot, and having debilitating nausea. I am weak, and the pred is giving me awful headaches as well (the other side effects haven't started yet-but I know they are coming).

My GI doc wants to get me on an immunosuppressant, which isn't something I am excited about.  He feels that since I have failed on Humira (an immune-blocker) that there is a higher chance I will fail on Remicade as well.  But the immune suppressors make me nervous too, and they take MONTHS to kick in-and I have to have some testing done first, before I can even start on them-that will take weeks.  So in the mean time, i am on prednisone, which is horrible, and not helping as much as I need it to anyway.

I am pretty miserable and sinking into a depression about it all.  I hate not feeling like I am in control of my own life and body, and I hate having to have everyone take care of me-even my own kids are trying to take care of me and they shouldn't have to do that.

I made an appt also with an integrative physician (he combines traditional, holistic and alternative treatments and has come highly recommended but not by anyone with my particular disease-still ANYTHING is worth a try) for early March.  We'll see what happens with that.

There are lots of tears flowing over here most of the time these days, and I am sorry I have little energy to focus on anything or anyone else. 

Thank you for your thoughts and prayers.  It means a lot to me.

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Laura
3s_a_crowd


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Date: Feb 19, 2010
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Prayers headed your way. If you need anything even just to vent Im here.

Hugs

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happylib


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Date: Feb 19, 2010
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Laura I am praying for you and will continue to do so.  Please don't ever hesitate to post, no matter what it is for.  I am so sorry that you are having to go through this and although I do not truly know your pain, as a mom, woman, and wife, can certainly understand how all of this ways so heavy on your heart.  I know you have people that love you and are doing all they can for you, including health professionals.  I will include them in my prayers as well.  I hope you get some rest tonight. :hugs:

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Sonya


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Date: Feb 19, 2010
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Lots of prayers, Laura. Please don't feel like you can't come here and complain.

We love you.

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a_mastermom


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Date: Feb 19, 2010
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Laura, my heart aches for you. Don't ever apologize for your posts. I only wish there was more we could do. :hugs

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Alicia
Lizzy


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Date: Feb 19, 2010
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((hugs)) I am thinking of you, Laura and praying that you are well soon.

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apies


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Date: Feb 19, 2010
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ditto everyone else laura.

we're all here for you.

please keep us updated daily so we know how you are doing.

:hug:

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kris


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Date: Feb 19, 2010
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laura, I'm praying for you and sending you such big hugs.

I'm so sorry you're going through this - we are here for you anytime you need an ear or a shoulder heart.gif

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Sara


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Date: Feb 19, 2010
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many prayers laura.

i am so sorry you are struggling with this so much.

hugs

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mctex


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Date: Feb 19, 2010
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Laura, I am so sorry to hear this. How awful. :(

I will continue to pray that you find some relief soon. heart.gif

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Dddiii


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Date: Feb 19, 2010
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Sending all my love, Laura.  

I couldn't begin to explain how much I am hoping a solution is found for you and you are your old healthy self as soon as possible.  This has been going on way to long now and I can understand how it is having such a huge mental toll on you as well as physical. 

***HUGS****

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CoffeeQueen


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Date: Feb 19, 2010
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I am so sorry, Laura. I really hope someone can find a way to help you. I cannot imagine what you are going through. I will say many prayers for you and that you can find better health in all of this. You are in my thoughts, hugs.

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sbucking


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Date: Feb 19, 2010
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My heart just breaks for you. I'm so sorry you have to deal with all of this. I'm praying for you.

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Michele


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Date: Feb 19, 2010
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Laura I am so very sorry you continue to battle this.  I am saying many prayers that the right doctor comes along with the right treatment plan soon.  Stay strong.  :heart 

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RedHawk


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Date: Feb 20, 2010
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I saw you posting here and thought, "oh no..."

I'm sorry. It sucks. Many prayers for you.

I can tell you a bit about immniosuppessents from when I was on them. I think they were what caused my hair to thin. I didn't lose it all or in chunks, but it did thin. It's been a while, but I'm pretty sure that's what did it. Came back in darker with a bit of a wave. LOL. I had blood tests weekly while on it. Caught Mono. You have to really be careful while out and about. Back then there wasn't hand sanatizer everywhere...It has been 15? years since I was on them, so they may be different now.

Pred is just sucky. No way around that. But, you do get hair growth with it... LOL Have you been on it before? Try keeping your house darker for the headaches. The light seemed to make me feel worse.

I know it is so crummy to be a sick Mom. Don't feel guilty. You're sick. It's not your fault. It sucks. That's life. Families take care of each other. I know, I know, so much easier to type then to live. Hearing Andrew say something to DH about me being sick, hurt, fragile, whatever just rips my heart.

IDK if you've mentioned, but how much of your colon is involved now? Is it the whole thing, or just part? Do you have other options at this point or do you need to wait for the other Dr?



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crystal


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Date: Feb 20, 2010
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laura, i am SO sorry you are dealing with this.  i totally understand how it feels to not feel well enough to take care of yourself, let alone a child!  i started seeing a holistic doc and he really saved my life.  he never "cured" me, but he got me functioning again and feeling pretty good.  not perfect, but waaaaaaayyy better.  i hope this guy can help you too.  unfortunately, my guy was super expensive, not only for his appointments ($350) but also for the treatments.  also, the natural things take longer to work too.  but, it was worth it for me.  i love my doctor because he gave me my life back. 

i am praying for you that you can get better heart.gif

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sappy


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Posts: 5126
Date: Feb 20, 2010
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laura,

i am so sorry you're dealing with this. a serious illness can just totally drain every ounce of energy and positivity you have. cry

i will pray and pray and pray like crazy that the doctors can find a solution for you that helps you get back on your feet and puts a smile back in your heart.

NO ONE is tired of hearing from you. NO ONE.

hang in there mama..... we're all pulling for you.

heart.gif

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daisy


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Posts: 1771
Date: Feb 20, 2010
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oh laura, this sounds terrible. i'm so sorry.
vent away anytime.
let me know if you'd like my number.  all my hugs and prayers to you laura.


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FoxyRoxy


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Posts: 1577
Date: Feb 20, 2010
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sending many prayers...

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Supafly


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Status: Offline
Posts: 5883
Date: Feb 20, 2010
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RedHawk wrote:

 

I saw you posting here and thought, "oh no..."

I'm sorry. It sucks. Many prayers for you.

I can tell you a bit about immniosuppessents from when I was on them. I think they were what caused my hair to thin. I didn't lose it all or in chunks, but it did thin. It's been a while, but I'm pretty sure that's what did it. Came back in darker with a bit of a wave. LOL. I had blood tests weekly while on it. Caught Mono. You have to really be careful while out and about. Back then there wasn't hand sanatizer everywhere...It has been 15? years since I was on them, so they may be different now.

Pred is just sucky. No way around that. But, you do get hair growth with it... LOL Have you been on it before? Try keeping your house darker for the headaches. The light seemed to make me feel worse.

I know it is so crummy to be a sick Mom. Don't feel guilty. You're sick. It's not your fault. It sucks. That's life. Families take care of each other. I know, I know, so much easier to type then to live. Hearing Andrew say something to DH about me being sick, hurt, fragile, whatever just rips my heart.

IDK if you've mentioned, but how much of your colon is involved now? Is it the whole thing, or just part? Do you have other options at this point or do you need to wait for the other Dr?

 


Thank you all so much for your continued thoughts, prayers and support.  I am exhausted, so this will be brief, but know that I really appreciate the outpouring of love I feel here.

Victoria-I have been on pred before and it was an absolute nightmare.  Just awful-and right now I am in the beginning stages where not all of the really bad effects have even started up yet.  I just hate this drug.

As for the colon involvement-mine has been left sided down to the rectum, but I am feeling like the transverse is now involved as well.  I haven't had a colonoscopy to show that, but it is just how I am feeling now.  It is worst starting on the left side definitely.  I do want to ask him about surgery as a possibility as well (and thank you for the PM as well).

Right now, I think the options are to wait it out and get started on the immune suppressor (which doesn't sound appealing since that seems to be a long haul), up the pred dose to try and improve things until we can get started on the immune suppressor or try Remicade, which if it works, will be temporary, but might get me feeling better faster.  And I am anxious to see what the integrative doc says as well-but like Crystal said, I know that will not be a quick fix either.  I am just not sure what the best route is to take right now.

 



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Laura
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