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It's all going haywire - part two!

ameslouise

ameslouise

Moderator
Hello all - Just needing to vent a little. Did I come to the right place? :)

I've had it. After three years of dealing with the Crohns, trying the "natural route" (which was excrutiatingly difficult AND expensive), Humira for almost a year, Metho for four months, nothing has changed....I'm finally off the prednisone again and all my symptoms have returned with a vengence. F***!!!! It seems the Humira and the Metho aren't doing squat and the only thing that keeps my symtoms under control is pred.

I feel like my body is revolting against me. I do everything right and nothing helps. I'm right back to square one where I was three years ago.

My doc is going in on Friday to take a look and see what's going on. I'm to start on cortifoam on Monday to tide me over until we can figure out the next step. I have a feeling surgery is in my very near future. I just want the pain and the urgency and the accidents to GO AWAY.

Thanks for listening. I feel really defeated.

- Amy
 
DustyKat

DustyKat

Super Moderator
Oh Amy I'm so sorry that this happening to you, it sucks big time. :(:(:(

God I hope you can get some relief with the Cortifoam and the doc can find you some answers. What sort of surgery would you be having?

Thinking about you Amy and sending loads of squishy hugs your way...........:hug::hug::hug::hug::hug::hug:

Dusty. :)
 
Astra

Astra

Moderator
Aw Amy!
This is such a bummer! After everything you've been thro! No wonder you feel defeated.
Thinking of you and hoping the doc sorts something out on Friday.
Sending a big hug your way, stay strong, we're here for you.
xxxxx
 
M

MADiMarc

Amy,
What a rip! Hopefully the doctors can figure something out for you so that you feel better. Let us know how it goes.
Good luck,
Michele
 
Mary

Mary

Amy, I am not scared of surgery....its seems to have helped alot of people. Its seems like sooner or later there isn't any other option but that one. From what I have read it is not a bad one. GEEEZ Im actually being optimistic (totally not like me). What Im trying to say is at least there IS an option. My greatest fear is getting cancer like my brother (brain tumor) he did not have any options.....Good luck you deserve it and WILL get it. Thank you for replying to my posts it has helped me alot. What goes around comes around. :)
 
dreamintwilight

dreamintwilight

Aww, Amy. Sorry to hear things still haven't improved. I would feel so angry and frustrated like you must feel.

I hope the cortifoam does work, at least in the meantime, until you get things sorted out. I have not had to get surgery yet, but who knows...if you end up going that way, maybe you'll feel like it has changed your life! :)

I'm rooting for you! You've really been through a lot. :(
 
W

Welsh-bird

Hi Amy. So sorry to hear thing's are going tits up again for you. You really have been through it and are long overdue a break now!!
Hope the foam's started to give you some relief, and hoping that come Friday your GI can get some new plan of action for you. This disease bloody stinks!!
Take care- and you sure came to the right place to vent! I've learnt that there's always someone around to listen and give advice here- helped me on numerous occasions.
Thinking of you and sending a big virtual hug x
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Good luck on Fri. Amy!! Whatever you decide, I hope it leads to some long lasting relief for you. You very much deserve it!!
 
Crohns08

Crohns08

Lots of hugs Amy! I was right where you were just a few months ago. I hope whatever you choose that it finally brings you relief!
 
ameslouise

ameslouise

Moderator
Hi Everyone and thanks for the support! I guess the part that scares me about surgery is that I already have no colon - if they take my pouch, that is the equivalent of 30cm of small intestine.... how much more can I live without and how will it affect my life? And what happens if the Crohn's come back after that??? I realize I am getting ahead of myself and I should just calm down until after the scope.

It's just amazing to me how quickly I can go from feeling good (love you/hate you pred!) to being back to square one - and how quickly it affects my mental health. I totally had a breakdown today. I just cried for ten minutes, and i haven't done that in a long, long time.

My husband suggested I take a nice warm bath. Which was wonderful. Until I SHIT in the water! Ugh!!!!!!! Haven't done that since I was three years old!!!

Thanks for listening - I'll keep you posted on what we find out Friday.

xo - Amy

PS I so want to call my parents in FL and have them come up to stay with me. I need a little Mommy loving, but it's kind of a lot to ask for them to drive all the way up here....
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'm sure your mom would at least want to know!! As a mom yourself, you know that too. Tell her what's going on Ames, then you may not need to ask.
 
Ian

Ian

Location
London, UK
Oh Amy that sucks, I'm really sorry to hear you're suffering :( Hope you make some sort of progress at your appointment.

Probably a stupid question but have you ever tried Remicade? (I don't recall you mentioning it). I only ask because I'm not finding Humira all that helpful either but Infliximab did wonders for me the time I used it to treat acute symptoms. I have no experience of it as a maintenance drug though.
Or have you tried aza or 6mp with a biologic?

At what dose of Pred do your symptoms start to return when you're tapering? Is there no way you can stay on a low maintenance dose? I know long term use is undesirable but is it safer at lower doses?

Sorry, I'm probably not being at all helpful, just hate to hear someone being out of treatment options. If it comes to having more surgery, it at least sounds like you have a loving and supporting family around you which I'm sure will make everything easier to deal with. Hope you find some relief in some form very soon! :)

And I agree with Dexky, call your mom. It always helps!
 
M

MADiMarc

Dear Amy,
I turned 45 this month. My 70+ year old mom is coming to see me because I have been feeling blue. I am not sick, sick! Just blue. Call your mom. The healing power that is mom is a force not to be ignored! Besides, 4 or 400, we all needs our mom.
Michele
 
glum chump

glum chump

Hi Amy

How frustrating this all must be...I find it particularly hard when I've had a "taste" of what relief from symptoms feel like to all of a sudden not being able to do the simple things in life like take a f@#%ing bath without messing up. Grrrrr! I feel so much of the frustration and anger you're expressing. I so hope that your doctor's appointment on Friday gives you some of the answers that you need to make the best possible decision for yourself. And jumping ahead is not such a bad thing...I see it as my Preemptive Readiness Plan!

My mom and I are close to Michele and her mom's age. My mom just sent me a care package of food, and every couple of days, she asks me if I want her to come see me. I know that if I was getting surgery, she would WANT to be here in a heartbeat.

I hope that you're able to reconcile your feelings and feel okay about asking her to come for a visit for you to have some mommy-love. Ain't nothing like it!
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
Amy, that really sucks that your symptoms have all returned again. I agree with the posters above me, at least call your mother. Even if she can't physically come to see you, she can provide some support and warmth over the phone. And if she can come, even better! :)

I hope the cortifoam gets you some relief until you figure out what to do next. If you're worried about surgery and possibly losing too much bowel, I know that DustyKat's daughter Roo has short bowel syndrome because of her resection, so you might want to reach out to Dusty (or hopefully she'll see this thread) so that she can reassure you and give you advice if you do go down that avenue.

Good luck, I really hope whatever you do that it leads you to relief and remission.
 
ameslouise

ameslouise

Moderator
Thanks everyone for your continued support and kind words!!!

Ian - I was on Remicade after I was first DX and had a bad reaction. My doc doesn't think Imuran or 6mp are stong enough for me. But we'll talk about exhausting all of those too before surgery I guess.

This round of pred, I was good up until 2.5 mg before all the symptoms started returning. Now I am suffering symptoms and some pred withdrawal too with fevers and joint pain. Ugh!

I'm off to call my mom right now!!

- Amy
 
endibd

endibd

ameslouise said:
Hello all - Just needing to vent a little. Did I come to the right place? :)

I've had it. After three years of dealing with the Crohns, trying the "natural route" (which was excrutiatingly difficult AND expensive), Humira for almost a year, Metho for four months, nothing has changed....I'm finally off the prednisone again and all my symptoms have returned with a vengence. F***!!!! It seems the Humira and the Metho aren't doing squat and the only thing that keeps my symtoms under control is pred.

I feel like my body is revolting against me. I do everything right and nothing helps. I'm right back to square one where I was three years ago.

My doc is going in on Friday to take a look and see what's going on. I'm to start on cortifoam on Monday to tide me over until we can figure out the next step. I have a feeling surgery is in my very near future. I just want the pain and the urgency and the accidents to GO AWAY.

Thanks for listening. I feel really defeated.

- Amy
Click to expand...
Keep this in mind...

There are 2 ways to affect change in the human body. Everything, everything the body does is based on electrical signals, ie the exchange of electrons.

Now consider this. Those electrical signals can be initiated in 2 ways. The first way, is a particular cell in the body receives a stimulus from its immediate environment. For example something the cell perceives and reacts to, initiates a response, like an invading bacteria, something rubbing against it, and so on.

The second way that something can happen in the body, is still through the means of electron exchange, but initiated by the brain itself. Ie stress, thoughts, etc etc.

You could be thinking yourself into it somehow. Keep happy.

We're all really made up of nothing but energy.
 
ameslouise

ameslouise

Moderator
End - I think you are saying "mind over matter" but not quite sure if that's what you're getting at.

You need to know that I am an EXTREMELY positive person, especially when it comes to my disease. My feeling defeated is a result of three years of doing everything I can possibly can, doing everything right and still my body betrays me. Even the most positive of us can start to get beaten down, there's only so much you can take.

So with all due respect, please don't tell me that I am "thinking myself into it" somehow. I find that insulting.

- Amy
 
AZMOM

AZMOM

Moderator
Amy - I hope your Mom comes running! Or at least is on high alert.

I'm still relatively new on here and trying to get everyone straight. But even as a newbie, I can tell you have been through the wringer.

I'm hoping for good things for you tomorrow.
 
tiloah

tiloah

ameslouise said:
End - I think you are saying "mind over matter" but not quite sure if that's what you're getting at.

You need to know that I am an EXTREMELY positive person, especially when it comes to my disease. My feeling defeated is a result of three years of doing everything I can possibly can, doing everything right and still my body betrays me. Even the most positive of us can start to get beaten down, there's only so much you can take.

So with all due respect, please don't tell me that I am "thinking myself into it" somehow. I find that insulting.

- Amy
Click to expand...
Sometimes you just need to vent. And where can you vent if not here? I once was on a forum (not crohn's related) where the people on it thought I just felt sorry for myself all the time and was incredibly negative. When in reality, being able to vent on the forum allowed me a space to get it out, so that I didn't drag it in to my real life.

Vent away I say! That's what this is for. And even if you *were* negative, I don't think there would be anything wrong with that. You're going through some stuff so I think it's totally acceptable (and being cheery all the time is not normal).
 
endibd

endibd

ameslouise said:
End - I think you are saying "mind over matter" but not quite sure if that's what you're getting at.

You need to know that I am an EXTREMELY positive person, especially when it comes to my disease. My feeling defeated is a result of three years of doing everything I can possibly can, doing everything right and still my body betrays me. Even the most positive of us can start to get beaten down, there's only so much you can take.

So with all due respect, please don't tell me that I am "thinking myself into it" somehow. I find that insulting.

- Amy
Click to expand...
Wow you're pretty negative there. Take a comment and make it seem like it's an insult to you.

I'm not saying mind over matter, but something quite different, mind is matter. The way you look at the world is often akin to the way your body reacts to the world. Inflammatory, aggressiveness...your body and immune system will follow your mindset. It's just what happens.
 
M

MADiMarc

Amy,
Keep breathing.
Like you, I am also a mostly positive, upbeat person. Like you when we have been through the wringer, it becomes a bit more difficult, I agree.
Did you call your mom?
Michele
 
dreamintwilight

dreamintwilight

Not to get in the middle of all this, but I don't think calling someone out for being negative is going to make them feel LESS negative. I can understand how Amy would think you were suggesting she just needed to be more positive (when in fact she really is one of the most positive people on here!), but can also understand that you may have just been misunderstood in your response.

Either way, I find a more helpful response would have been to just apologize for the misunderstanding and try and find a better way to explain yourself. Calling someone negative isn't conducive to making them want to be more positive, if that is what your point was. It just makes them defensive.
 
endibd

endibd

endibd said:
You could be thinking yourself into it somehow. Keep happy.
Click to expand...
Ok, this is what I wrote, then I got told I was insulting. I don't see it. I said keep happy - anxiety, stress, worrying, all can be factors in disease and someone's well being.

I only said that someone was negative, after they took an ambiguous general statement and twisted it that I was being insulting, and I'm not going to apologize for that.
 
dreamintwilight

dreamintwilight

"Keep happy" doesn't cancel out the fact that you told her she could be thinking herself into it.

She started the thread to get some support and to vent. Your statement was basically implying that her current state of health might have been due to the fact that it was her own doing. That is insulting.

Anyway, I'm not here to hijack Amy's thread. You are more than welcome to hold your own opinions and beliefs, but when someone is in need of support I think any and all of the responses that follow should include that supportive sentiment.
 
ameslouise

ameslouise

Moderator
Thanks, everyone. Sorry this turned ugly. Let's just drop it all so no one else gets insulted or misunderstood.

I'll post on Friday when I am home from the hosp to let you know the results of the scope.

- Ames
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Amy, those who mind don't matter!!:) Anyone who's been on here very long knows how positive you are!! Sometimes your positivity has amazed me and frankly has confused me on more than one occasion. I've thought you were much better off than you actually are at least twice now. Crohns has not put out your light!!
 
C

Crohn's 35

Inactive Account
Amy! So sorry I missed all this! I wondered how you are doing and you are possibly heading for surgery! Well I have had 2ft taken out and so far now I am ok. Switching my meds and other natural stuff. Some work some don't. My body rejects everything (except fat!). I was sure 3rd surgery was coming but so far no narrowing. Hope you get relief soon, you have been through enough!

Hugs and all the best!
 
ameslouise

ameslouise

Moderator
Hi Pen - Nice to see you here and thanks for the kind words!

Friday can't come soon enough. I think right now is the worst I have ever been. I have already soiled myself thrice today, lost a pair of undies and permanently discolored my favorite pj bottoms (but refuse to throw them out!). I have pain like I have never known before and have zero control over my bowels! Ack!

But I can always look on the bright side of things - SOOOO happy to see EndIBD banned from the forum! I know that's mean but that guy was really getting on my last nerve!

- Amy
 
ameslouise

ameslouise

Moderator
PS Another bright spot is to see how much support I have when I am really in bad shape. I had four friends offer to take me to the scope on Friday since my hubber has to be in court. And the three that aren't taking me are actually bummed not to be able to spend the day with me. Now that makes a girl feel loved!
 
Astra

Astra

Moderator
Aw Amy
You are sooooooooooo loved! By me, and everyone on here!
Besta Love n luck for Friday
xxxxx
 
C

Crohn's 35

Inactive Account
Amy, you are well loved because you also helped out so many, and that kind of support isn't always given here on the forum. I know you want to get rid of pain and I don't blame you, when I had my first surgery I never regretted it but my second was not done by a very good surgeon. I do what ever I have to do to get out of pain, scary as some options are... I did it anyways.

I agree also with the endibd is gone, there have been too many pushing their opinions and telling people they are wrong. Everyone's experience is different! When we have good days we embrace it, when we are down of course sooner or later we all need support. NO ONE knows when their luck can run out... so being good and kind to everyone all the time, makes you a good person.

No matter what, we all want to know how you make out Friday. :ghug:
 
M

MADiMarc

Amy,
Te-he! I guess I am a small minded person who is a bit mean too!
Keep the faith! Prayers with you for Friday.
Michele
 
ameslouise

ameslouise

Moderator
Well, I guess I'll be see y'all around the ostomy forums very soon....

Seeing the surgeon Wednesday. Thankful for an end in sight to the misery.

Glad I kept that ostomy underwear from so many years ago!! :)

-Ames
 
dreamintwilight

dreamintwilight

Oh, Amy...I'm glad a decision has been reached, even though it may not be what you were hoping for. Hopefully it will bring you that much needed relief and you can go back to living a normal life. :)

I'm thinking about you! :::HUGS:::
 
Ian

Ian

Location
London, UK
Good luck Amy, hope this puts an end to your suffering for GOOD!

And ditto on your sentiments towards EndIBD - what a douche (with a capital C) ;)
 
ameslouise

ameslouise

Moderator
Haywire quickly coming to an end... surgery set for March 15. Not a day too soon in my book! I am very anxious, but glad I have a couple weeks to get things in order. Just enough time to square things away but not so much time that I will freak out thinking about it too much.

Okay, I'm freaking just a little after the doc said it was going to be a complicated surgery. But mostly I am just fine, mentally anyway!

Oh, and my surgeon is 40. Ugh. Depressing to have doctors younger than me!!

-Amy
 
AndiGirl

AndiGirl

Your Story Forum Monitor
I'm sorry Amy. I sure hope that you are receiving some tender loving care from your loved ones.
 
P

PeninsulaLil

Sorry you've been feeling so punk and glad you're going to be feeling way better soon! I hope the surgery and recovery go smoothly for you. And I know what you mean about young docs. The last time I was in the emergency room I was seen by 3 different docs and I swear not one of them was over 16!!!

Lilly
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
You're over 40!!?? How old is that avatar pic? At least 15 years old!! I hope the next 3 weeks pass quickly and pain free for you Amy and you come through the surgery with a whole new (inside) you. Don't change a thing about the rest of you though...I like her!!
 
ameslouise

ameslouise

Moderator
Aw, shucks! You guys are too sweet!

I will be 43 this year, and I think my avatar pic was taken 2 or 3 years ago. Time for a new one maybe....

And PS I totally don't ACT like I'm over 40!!! :)
 
M

MADiMarc

Amy,
I am excited that relief is in sight for you. I think I would be a bit freaked myself (yeah, I definitely would) but you seem to be ready.
Oh, all of my docs are younger than me! After my last GI guy retired, I figured go younger. Look at it this way, steady hands are a good thing in a surgeon!
Good luck and love the avatar. You must be doing something right, you look fab!
Michele
 
ameslouise

ameslouise

Moderator
Soooo.... my sister is always trying to get me to try these miracle cures that just happen to be whatever she is selling at the moment. Right now she is a Market America rep and they have a big line of vitamins. She BEGGED me to try this OPC-3 shiz - her colleague had horrible UC, was on the verge of a rupture, took this stuff and miraculously went into remission within 1 week. Praise the Lord! It's a miracle!

So, I bought some of the stuff becuase, at the very least, it's a big dose of vitamins in liquid form and I always do well with liquid vitamins. I've been taking it for four days now.

AND FOR THREE DAYS I HAVEN'T HAD SO MUCH AS A SYMPTOM. No pain, no urgency, no accidents, sleeping 4-5 hours at a clip.

WTF???

Tonight I ate salmon cakes which always sit poorly with me and fried potato latkes, just as a test. Oh, and I put sour cream on them, too.

HAVE I LOST MY MIND?!?!?!?

:)
 
Entchen

Entchen

Chief Dandelion Picker
Salmon cakes and latkes? Wahoo! Enjoy this time of feeling so well -- a much-needed break!
 
M

MADiMarc

Yeah! Woo and two hoos! Okay, I have a sister like that too. She really does believe it, so I try it all too! I have not had results like you though. I may pm you for the name of it so I can give it a go! So happy for you!
Michele
 
M

MADiMarc

Oh, and you have not lost your mind. I do the same thing when I am feeling well...I push it because I have been eating nothing but gruel and paste & I miss real food! I say, if the tummy doesn't grumble, go for it!
Here's to continued feeling good times,
Michele
 
crohnicaly stinky

crohnicaly stinky

Amy, Sorry to hear you've been in the dumps again. Good luck on the surgery! Funny, I have a local friend who is having a short piece of small bowel resected on that same day.

Hope all goes smoothly for you and echo Mark, you're such a beautiful lady, I hope find some peace.
 
xJillx

xJillx

Your Story Forum Monitor
Amy, that is amazing!! How are you feeling today? I hope even better! Please, keep us posted!
 
ameslouise

ameslouise

Moderator
Okay, I am really freaking out over here. I FEEL GREAT. WTF?? Where was this miracle six months ago????

I talked it over with my hubber today. I am so confused! I honestly don't believe in miracle cures and so I don't know what to do. Is this a coincidence? Would I be this freaked out if I tried a new pharmaceutical and it started to work right away?

I decided to give it a week and keep testing it. If things are still good after a week, I will go talk to my GI.

... who will clearly call in the men in the white coats because he will think I am insane.

I'll keep you posted. And if anyone wants to try the snake oil, pm me. :)

xo - Amy
 
ameslouise

ameslouise

Moderator
PS I had been using Cortifoam up until Sunday and ran out of that so maybe this is a holdover effect from a week's worth of steroid foam?
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
I was avoiding this thread because I didn't like the negativity of that "EndIBD" guy and I guess I'm late to the party in seeing that he's banned! So here's my catching up...

Amy, I also concur that you don't look your age! I'm 31 and you look like you're around my age, even with the new profile pic. Besides this new miracle vitamin cure, what's your secret? :)

And that's crazy about the vitamin thing curing your symptoms. At this rate, you might have to change the thread title to It's NOT all going haywire! ;) Seriously though, if it were me, I think I'd postpone the surgery and have them scope or scan me first to see if things are actually healing or if it's just supressing the symptoms. And if this vitamin thing is actually healing you - I definitely want the name of it! I don't believe in miracle cures either and I'm a skeptic by nature, but it sounds like this is legitimately working for you and that's awesome. If it works, I'm not going to knock it (and I may try it myself!).
 
M

mizgarnet

Amy,
I looked up the "snake oil". Wow. You may have stumbled on my missing puzzle piece- liquid anti inflammatory!

Glad you are feeling better.

Wendy
 
M

MADiMarc

Ames,
Why do we all do this? Why do we question feeling good? Like you & Cat I do not believe in miracle cures. But if it works, get me some!
Michele
 
xJillx

xJillx

Your Story Forum Monitor
Yes, I agree with Cat. If you are still feeling good in a week, I'd call the GI and schedule a scope to see if this vitamin has in fact made a positive difference. I am praying that it does!
 
KWud

KWud

Just joined in on this thread, I'm always late!!! :)
Keeping my fingers crossed for you Amy and sending you lots of big hugs!!!!
Take care and good luck :)

Paula
x
 
AndiGirl

AndiGirl

Your Story Forum Monitor
I went back and reread many of the comments. I hope you are feeling good, Amy. Just like cat said, "You don't look your age." I'm 38 and with my flare-ups sometimes I feel a lot older. I guess my only words of wisdom at this time are, "Bad things happen to good people and even when you do all in your power to do things right." As for the attitude, I've enjoyed getting to know you as a fellow forum monitor. You are very sweet and very positive. I'm glad that jerk is not posting anymore.
 
mario

mario

Hi Amy
Just read this thread.
Well you really have everyones attention now!!!
So pleased you are feeling good - you really do deserve a break!
If you have found the miracle cure then SHARE please.
I truly hope you continue to feel well because you seem to be such a lovely person and you have suffered SO much. Also have to agree with the others, Crohns may have wrecked your insides but it certainly hasn't robbed you of your looks!
 
Astra

Astra

Moderator
BLOODY HELL AMY LUV!
WTF? indeed!
I dunno what you should do now? I hope your pains don't come back, I hope you don't cancel appt, and then have to wait for ages for another one?
But.. if this snake oil is the business, then...WTF!
Keep on feeling fab Amy!!!
Keep smiling!
xxx
 
ameslouise

ameslouise

Moderator
I am so humbled by everyone's responses and kind words. I am sure you all feel the same way but I really feel like I know you all and am so glad to be able to call you my friends.

Well, things are back to "normal" today. And by normal I mean pain and cramps and leakage. So I guess it was the Cortifoam keeping things at bay (need to refill that script!)

Anyway, this may sound f-ed up but I am relieved that things are going haywire again becuase now I don't need to make a different decision. It's full steam ahead to March 15 and the surgery.

Still taking the snake oil. Can't hurt to go into surgery with a good dose of vitamins under my belt.

Thank you all for caring about me so much. xo xo - Ames
 
KWud

KWud

Awwww big big hugs to you Amy. Hope all goes well on 15th March, I'll be thinking of you and wishing you a speedy recovery afterwards. Take it easy hunny.

Love

Paula
x
 
dreamintwilight

dreamintwilight

Aww...I hear you Amy. After wrapping your head around surgery and then having to cancel surgery would have been agonizing. Hopefully in the least your body won't require as much healing time if you've got all those good vitamins pumping through your system, right?

The 15th is right around the corner! :)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Sorry the pain returned Amy, but I'm glad you had a few days off!! It got you a little closer to the 15th:). Hang in there girl!!
 
xJillx

xJillx

Your Story Forum Monitor
Sorry things are back to "normal", Amy. But, you are right, now you know you are making the right decision. We will all be thinking about you, so as soon as you feel up to it, please let us know how you are doing after your surgery. Sending thoughts and prayers your way!
 
M

MADiMarc

Amy,
I know EXACTLY what you mean! Better the devil you know is the saying I use frequently. Making your mind up to have the surgery, then questioning it, then going back and forth...enough to make you crazy! I am very sorry you are hurting though. Snake oil or not, it doesn't seem to be hurting you, right?
Good luck.
Michele
 
AZMOM

AZMOM

Moderator
Like everyone else, Amy, I'm so sorry that you are hurting but glad it makes the path clear for you. Take care of you and keep up the snake oil. Couldn't hurt, might help. :)

Hugs,
 
ameslouise

ameslouise

Moderator
Yeah, I'm staying on the snake oil, which is just a big liquid vitamin and antioxidant. It can only serve to make me healthier for the surgery and doesn't seem to be making anything worse than "normal."

Yesterday I got my new hospital jammies and started making a pile of stuff for the hospital. I feel like I'm getting ready for vacation!

- Amy

BTW, market is wide open for decent hospital jammies, 2 piece style. The ones I bought were expensive and kind of geriatric looking. If I had more time, I would make some cute ones myself!
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
Is there a difference between hospital jammies and regular pyjamas? Buttons along the sleeves for IVs maybe? I can sew, I might look into making myself a pair if I could find a good pattern (if there is a difference, I could probably find a regular pyjama pattern and modify it to be up to hospital standards). Apparently there are "designer" hospital gowns so hospital PJs can't be far behind - Amy, I think you've hit on the next big trend! :)
 
ameslouise

ameslouise

Moderator
Hi Cat - they have snaps along the shoulder and sides so you can maneuver with an IV. I also got a nightgown, which is pretty standard. "designer" nightgowns are easy to find, but I don't find them to be very pretty. I also wanted two piece pjs, which is what i bought. I would have preferred dark colors, you know, for hiding body fluid stains.

I would love to start a little cottage industry business! I could call it "bag lady" and the pj's could come in a matching little bag that you can use to take your toothbrush and some other goodies to the hospital!
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
That's a really cute idea! Do you sew? If so, you should make up some prototypes and see if it catches on. If it does, you could even make matching accessories to go in the bag like slippers or sleep masks.
 
M

MADiMarc

Hey, the ideas are way cool! The ones of us that sew could all do it based on your designs if you get too much to handle yourself. This could be a great way to keep occupied while having a flare.
You ladies are on to something!
Michele
 
dreamintwilight

dreamintwilight

I had no idea you could buy your own hospital gowns!! Where do you find these?

I am so small that the gowns never fit me right in the hospital. I felt odd walking the halls. If someone really is going to consider making hospital gowns, maybe consider putting a built in bra top in it for women. Makes it easier for women to get scans without worrying if their bra tops have metal in them--not to mention you don't feel like it's all hangin' out, haha!

But seriously...are there places online you can find nice hospital pajamas, Amy? Post links! :)
 
ameslouise

ameslouise

Moderator
Marisa -tons of places online, just google "designer hospital gowns." I tried to find kid's gowns for you but couldn't find any. There's lot of places that have maternity and nursing gowns.

I love the idea of matching eye mask and slippers! That is great!

Sounds like Bag Lady could really take off!

PS I got my pjs at http://www.docmae.com/pajamas.htm
 
tiloah

tiloah

ameslouise said:
I would love to start a little cottage industry business! I could call it "bag lady" and the pj's could come in a matching little bag that you can use to take your toothbrush and some other goodies to the hospital!
Click to expand...
I love this idea! Make some and sell 'em on Etsy. I would buy some. :D
 
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