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  • 5 months later...

,

Was so glad to hear from you. sorry about the set

back but keep strong and my prayers are with you. And

your mother too. Let us know about the shower when

you are feeling well.

Hugs!

kathy

______________________________________________________________________

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  • 9 months later...

I for one am glad you had to send to the group! I started with

Samters when I was 23 and I know how I felt at that young age,

raising a family, working, and being sick all the time. You sound so

much more mature and in control than I was then! I have had this 23

years now and each day is in some form of a struggle with many

lessons learned. I hope the allergist/pulmonologist can help you feel

better with the asthma, it took a long time to find the right

meds/treatments to control all of this for me. Keep posting and let

us know how things go! Trudy.

>

> Hi everyone,

>

> Sorry to end up sending this to everyone. Pam sent me an email

> asking how I was, but her email is inactive. But, hey, maybe

> someone was waiting with bated breath to find out whether I was, in

> fact, still alive. :)

>

> The last time I wrote, I think I was going through a nasty

staph

> infection. In the end, I ceased antibiotics after I ran out of

> available options. There was nothing I could tolerate. It seems

to

> have disappeared of its own accord.

>

> I finished my law degree, did a 180, and got an unrelated

job.

> Researching and writing about rare books, which I enjoy. I'm still

> not well, so certain parts of my job (heavy lifting of book crates,

> for example) are challenging. I had a brief period where I felt

> pretty good, but the Singulair has stopped helping the asthma,

> although it did improve the polyps. I use my inhaler between 6 and

> 10 times a day. Needless to say, I've been having a fair bit of

> asthma trouble.

>

> I've also had quite a few allergic episodes, some of them

> dangerous (one sip of French (alcoholic) cider last night, for

> example). I believe I mentioned this last time I was here, but,

> please, I urge those of you considering taking Tylenol to please be

> careful. The last time I took it, I ended up alone, passed out on

> the floor of my apartment after I could no longer breathe. Don't

> take it alone, don't take it without a way to get medical

> intervention. It was, for me, identical to an aspirin reaction.

>

> I took off 45 of my Prednisone pounds. Yikes. I still have a

> way to go, but I am now fairly certain that none of my difficulties

> are weight-related. I've been on a restricted calorie diet for 8

> months (about 700-1000 a day). Based on my exceedingly scientific

> test sample of exactly one, I would be inclined to say that weight

> is not a major factor in all of this.

>

> On Tuesday, I have an appointment with an

> allergist/pulmonologist. Hopefully, I can get some additional

> medication or help or whatever. I'm not thrilled with how I feel

> right now.

>

> I still have days when all I want to do is break down in tears

> and cry about the fact that this is my life - that I'm 22 and I

feel

> 80. My mom worries more than I'd like her to. None of this is

> easy. (I have days when I feel untouchable and disgusting, from all

> the nose-blowing and coughing, basically, which leads to weird

> agoraphobic things. I'm sure one or two of you can relate.) But,

> for all of that, I'm still trying really hard to accept this is

> forever and let it go.

>

> Hope that answers Pam's kind email. I think it tell the rest

of

> you far more than you wanted to hear. :P

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Hi Jessafeiler,

I read your letter and was really touched by it. The bit you wrote about being only 22 yet feeling 80. I had my 30th birthday when I was going through a very bad patch with Samters (before I knew what was wrong with me, so I was also very fearful). I remember thinking the whole time that I felt like I was 80, and wondering where my life had gone. It just shows how debilitating and exhausting this condition can be. Luckily, I do feel much better on the whole, and feel about 34 (my true age!). I really hope you get a break soon and start to find life a bit easier.

Best wishes, Becky xjessafeiler3 <jessafeiler@...> wrote:

Hi everyone, Sorry to end up sending this to everyone. Pam sent me an email asking how I was, but her email is inactive. But, hey, maybe someone was waiting with bated breath to find out whether I was, in fact, still alive. :) The last time I wrote, I think I was going through a nasty staph infection. In the end, I ceased antibiotics after I ran out of available options. There was nothing I could tolerate. It seems to have disappeared of its own accord. I finished my law degree, did a 180, and got an unrelated job. Researching and writing about rare books, which I enjoy. I'm still not well, so certain parts of my job (heavy lifting of book crates, for example) are challenging. I had a brief period where I

felt pretty good, but the Singulair has stopped helping the asthma, although it did improve the polyps. I use my inhaler between 6 and 10 times a day. Needless to say, I've been having a fair bit of asthma trouble. I've also had quite a few allergic episodes, some of them dangerous (one sip of French (alcoholic) cider last night, for example). I believe I mentioned this last time I was here, but, please, I urge those of you considering taking Tylenol to please be careful. The last time I took it, I ended up alone, passed out on the floor of my apartment after I could no longer breathe. Don't take it alone, don't take it without a way to get medical intervention. It was, for me, identical to an aspirin reaction. I took off 45 of my Prednisone pounds. Yikes. I still have a way to go, but I am now fairly certain that none of my

difficulties are weight-related. I've been on a restricted calorie diet for 8 months (about 700-1000 a day). Based on my exceedingly scientific test sample of exactly one, I would be inclined to say that weight is not a major factor in all of this. On Tuesday, I have an appointment with an allergist/pulmonologist. Hopefully, I can get some additional medication or help or whatever. I'm not thrilled with how I feel right now. I still have days when all I want to do is break down in tears and cry about the fact that this is my life - that I'm 22 and I feel 80. My mom worries more than I'd like her to. None of this is easy. (I have days when I feel untouchable and disgusting, from all the nose-blowing and coughing, basically, which leads to weird agoraphobic things. I'm sure one or two of you can relate.) But, for all of

that, I'm still trying really hard to accept this is forever and let it go. Hope that answers Pam's kind email. I think it tell the rest of you far more than you wanted to hear. :P

Moving house? Beach bar in Thailand? New Wardrobe? Win £10k with to make your dream a reality.

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  • 7 months later...
Guest guest

In a message dated 7/9/2005 4:04:19 PM Pacific Standard Time,

tripletsand1@... writes:

Nobody had a record of it and

all said that they had never even been asked before!

,

Wouldn't there be a record of it in the Pharmacy?

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

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  • 1 month later...

,

sounds like you're gearing uo for busy few weeks!

enjoy it <GBG> mine starts college Monday 0 she

just got her books yesterday - thank God for

financial aide!

fly, fly fly - commiting to a whole month to

flying - I'm impressed, I'm lucky to keep the

sink clean :(

how about the plans you have for working on you?

I know you're big on journaling but what other

plans/goals do you have?

Ok this is the last week before vacation. Fri

> is races. Sat races. Sun

> pack. Gone M-TH to the mountains. YES...

> Hubby goes back to work 8/ 29. 8/31

> open house at school. SEPT 1 both kids go

> back to school fulltime. I have

> decided to work on ME ME ME and the HOUSE

> while they are at school. I am

> totally going to FLY for the month of Sept and

> follow the zones.

Live, Love, Laugh

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-Hi :--

> Faye how goes the daily goal list you are working on?

Thanks for thinking of me. I will post , but my daily goal list is

going! some good points some not so good points

<<<<<,,,,

> SEPT 1 both kids go back to school fulltime. I have

> decided to work on ME ME ME and the HOUSE while they are at

school.

Yeah!!! Great plan, !!!

<<<<<<<<<<<<<<<<<<

> I know money is

> so tight right now BUT I feel I have to get him to commit to

getting me

> there. I have not been in one month.

<<<<<<<<<<<<<<<<,,,

: I sure hope you will be able to fit WW in your spending plan,

SOME WAY, SOMEHOW!!!!! I am always inspired by you and your

attendance at meetings, etc. It seems to be a great help, and I hope

you can have that support!

Faye

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> mine starts college Monday 0 she

> just got her books yesterday

First kid to go? Is she going to a local school & communting or living in a

dorm? We're lucky that Henry's school is just 10 miles (but 3 train rides

for a 90 minute commute) away. We asked if he wanted to stay at the dorm,

for comfort and convenieces, and he aid it's not worth the money. Smart kid.

- thank God for

> financial aide!

AMEN! Even though his scholarships cover the tuition, as your're finding

out, that's just a portion of the cost. Books for him run over

$1000/semester, and the materials for his computer labs last year cost

almost $500. Who knows what we'll have to shell out now for his senior year

labs and senior project? I *hope* the student loans cover it all - last year

they didn't.

> Ok this is the last week before vacation.

My hubby has vacation next week, too, but we'll be staying home and

*hopefully* taking day trips. We had plans for each day next week, then we

found out yesterday after I got a flat that we need 4 new tires on the car.

There goes our vacation money! At least one day we'll still take the subway

ride to NYC and roam around, even if we don't buy anything.

Sue in NJ

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I tried to get her to go away this year - I made

squat last year but she wants to go local. Should

be intersting - she's still not driving, I can't

afford to get her a car and she lost her job last

month. We'll be fiiguring out this weekend. The

local bus runs from our apt complex to the

college.

It's been 14 years since I've been in college and

it's so different just getting started.

Hope you enjoy your day in NYC!!!

Live, Love, Laugh

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  • 4 months later...

> Friday my littlest was sick and then Daddy got it. YUP and now mama has it.

Aw, and for Christmas, too! Hope you're all feeling better soon.

> big tub of oxiclean, batteries

Gee, these are the kinds of gifts *I* used to get!

>Cant you tell I got money for xmas. LOL

Oh, yeah! Try to spend it on *yourself* instead of things for the kids or the house.

Sue in NJ

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  • 5 months later...
Guest guest

Hi Jenn glad they figure out that the hemangioma is nothing to worry

about and found out where your pain was coming from. I tried looking

up sciatic notch syndrome and it took me to spineuniverse and

piriformis syndrome. So maybe you might check there it did mention

sciatic notch in the article I read. Try this link

http://www.spineuniverse.com/displayarticle.php/article170.html

Hope this helps you out. If you have more questions I'd call your dr

and ask him to explain it more to you. Unfortunately when we are

usually at the dr's office we fail to think of all the things we

think of later that we don't understand. Best wishes Sharon Group

Owner

>

> Hi everyone -

>

> You may remember my post from a couple weeks ago asking for help

on reading my MRI report where it said a small hemangioma was found

in my L3 along with the two herniated discs that I knew I had in my

L4-L5, L5-S1.

>

> Well I saw my Neurosurgeon and he said that the hemangioma is

nothing to be concerned with because he doesn't think that my pain

is coming from that. He said I have a small cyst in the L3 area.

>

> What he thinks is causing my pain is inflammation of the muscles

and everything in my lumbar back on the left side along with joint

inflammation and a piece of disc that broke free and is floating

around in my back on the left side. He pushed right on the spot

that he said would be causing my pain and I thought I was going to

go through the roof. So he's got me on an anti-inflammatory for

now, and if that doesn't work then I might be going for another

epidural but this time on my left side instead of the right side.

>

> As for the pain I had on my right side all this time that they

haven't figured out yet, he thinks it might be what's called Sciatic

Notch Syndrome. I tried looking it up online to do some research on

it and can't find anything at all.

>

> Jenn

>

>

> ---------------------------------

> Be a chatter box. Enjoy free PC-to-PC calls with Messenger

with Voice.

>

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Guest guest

Hi Sharon -

Thank you so much for the information and for the link. I'm definetly

going to give my doctor a call back. You're so right, you always

think of so many more questions after the appointment. But my doctor

is great, he always says when I'm leaving that if I have any

questions I can call and have him return my call to speak to him.

He's a wonderful doctor and I'm so glad I found him!!

Thanks again!

Jenn

> >

> > Hi everyone -

> >

> > You may remember my post from a couple weeks ago asking for

help

> on reading my MRI report where it said a small hemangioma was found

> in my L3 along with the two herniated discs that I knew I had in my

> L4-L5, L5-S1.

> >

> > Well I saw my Neurosurgeon and he said that the hemangioma is

> nothing to be concerned with because he doesn't think that my pain

> is coming from that. He said I have a small cyst in the L3 area.

> >

> > What he thinks is causing my pain is inflammation of the

muscles

> and everything in my lumbar back on the left side along with joint

> inflammation and a piece of disc that broke free and is floating

> around in my back on the left side. He pushed right on the spot

> that he said would be causing my pain and I thought I was going to

> go through the roof. So he's got me on an anti-inflammatory for

> now, and if that doesn't work then I might be going for another

> epidural but this time on my left side instead of the right side.

> >

> > As for the pain I had on my right side all this time that they

> haven't figured out yet, he thinks it might be what's called

Sciatic

> Notch Syndrome. I tried looking it up online to do some research

on

> it and can't find anything at all.

> >

> > Jenn

> >

> >

> > ---------------------------------

> > Be a chatter box. Enjoy free PC-to-PC calls with

Messenger

> with Voice.

> >

>

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  • 10 months later...
Guest guest

> i had to stay overnight do > to minor complications with anesthia.

Sorry to hear that . I hope things are going okay for you now.

> They started surgery late 3 15.

Ugh!

> bottom line they did not have to cut me. AND I AM HOME.

Good news! Now to start healing.

Sue in NJ ºoº

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  • 10 months later...
Guest guest

>THEN yup I got it. Still dont feel right.

Keep those germs in NH, okay! We've got enough of that flu here in NJ!

>Keegan Lucas was born 2/28 at 9 lbs.

Congrats to all involved!

> I will check in after the weekend.

Hope you feel better soon!

Sue in NJ

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Guest guest

Congrats on being a Great Aunt! I am 6 times over and have 2 more on the way in the next 2 months..... and the nieces and nephews are just starting to grow up. Hope you are feeling better!a

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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  • 2 months later...
Guest guest

Thanks for the update, Colleen.

Good girl on reforming hubby's diet and exercise habits! It won't be easy,

but it'll be worth it. It will also help treating his apnea. He'll likely

start feeling a lot better, then.

Beth

_www.soapandgarden.com_ (http://www.soapandgarden.com/)

Be good to your skin!

www.saponifier.com

In a message dated 5/4/2008 10:36:41 P.M. Eastern Daylight Time,

countrymeadowcreations@... writes:

He thinks he's coming home tomorrow or Tuesday. I'm in the process of

looking for heart healthy recipes because I'm not allowing him to eat

junk any more. He's going to be eating healthy and exercising even if

it kills me! LOL!

Well, I must get some sleep because I've got a busy day tomorrow.

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

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Guest guest

Colleen, good for you for looking out for making him eat healthier.

Sometimes it takes a big kick in the pants to make some guys realize what

they need to do. Bigger kick in the pants for others. There should be tons

of good information out there.

Glad he is comming home! You all just take it easy!

Shaye

Quick update

Thanks for all the well wishes! is doing better, no pain today.

Yesterday he had some fluttering, but it wasn't another heart attack

as he was afraid of. The doctor said it was his heart trying to get

used to all the blood flowing back thru his stents.

Thankfully the sleep folks at the hospital are hooking him up tonight

to test for sleep apnea. I've been telling him for about 6 years he

needed to go to a sleep clinic. Luckily all the monitors he was

hooked up to the last 24 hours picked up the apnea so they really gave

him no choice but to be tested. Now to get him to understand he needs

the machine so I don't lie awake counting how many seconds he isn't

breathing and making sure he starts breathing again!

He thinks he's coming home tomorrow or Tuesday. I'm in the process of

looking for heart healthy recipes because I'm not allowing him to eat

junk any more. He's going to be eating healthy and exercising even if

it kills me! LOL!

Well, I must get some sleep because I've got a busy day tomorrow.

Again, thanks for all the emails & thoughts/prayers, we really

appreciate it!!

Colleen

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Guest guest

Colleen,

I'm so glad is improving. Husbands will be the death of us...LOL.

Try the 'net for hints and recipes. www.wegmans.com also has some good tips

in the 'eatwell, live well' section. The life style change will help the

whole family. I changed our eating habits a bit at a time because is

so stubborn about eating certain things. He also had sleep apnea. Meds

helped that. Now he is fighting using his oxygen at night. At least he

uses it during the day.

Good luck and happy for you.

Jeanine

Jeanine's Hummingbird Soap Works

Quick update

Thanks for all the well wishes! is doing better, no pain today.

Yesterday he had some fluttering, but it wasn't another heart attack

as he was afraid of. The doctor said it was his heart trying to get

used to all the blood flowing back thru his stents.

Thankfully the sleep folks at the hospital are hooking him up tonight

to test for sleep apnea. I've been telling him for about 6 years he

needed to go to a sleep clinic. Luckily all the monitors he was

hooked up to the last 24 hours picked up the apnea so they really gave

him no choice but to be tested. Now to get him to understand he needs

the machine so I don't lie awake counting how many seconds he isn't

breathing and making sure he starts breathing again!

He thinks he's coming home tomorrow or Tuesday. I'm in the process of

looking for heart healthy recipes because I'm not allowing him to eat

junk any more. He's going to be eating healthy and exercising even if

it kills me! LOL!

Well, I must get some sleep because I've got a busy day tomorrow.

Again, thanks for all the emails & thoughts/prayers, we really

appreciate it!!

Colleen

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Guest guest

Colleen

I'm so happy to hear things are improving. Changing eating habits can be

tough but there are tons

of recipes on the internet for heart-healthy eating. I think the hardest

thing is trying to understand and then

reading all the labels on products in the stores. Don't go by what they

say on the front of the product because

it can be very deceiving.

Good luck

Quick update

Thanks for all the well wishes! is doing better, no pain today.

Yesterday he had some fluttering, but it wasn't another heart attack

as he was afraid of. The doctor said it was his heart trying to get

used to all the blood flowing back thru his stents.

Thankfully the sleep folks at the hospital are hooking him up tonight

to test for sleep apnea. I've been telling him for about 6 years he

needed to go to a sleep clinic. Luckily all the monitors he was

hooked up to the last 24 hours picked up the apnea so they really gave

him no choice but to be tested. Now to get him to understand he needs

the machine so I don't lie awake counting how many seconds he isn't

breathing and making sure he starts breathing again!

He thinks he's coming home tomorrow or Tuesday. I'm in the process of

looking for heart healthy recipes because I'm not allowing him to eat

junk any more. He's going to be eating healthy and exercising even if

it kills me! LOL!

Well, I must get some sleep because I've got a busy day tomorrow.

Again, thanks for all the emails & thoughts/prayers, we really

appreciate it!!

Colleen

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Guest guest

Hi Colleen,

I am glad to hear the good news about . There are so many

healthy foods out there these days that are actually really tasty. I

am going to follow your example and start fixing healthier meals. If

I come across any good recipes I will send them to you.

Delores

>

> Thanks for all the well wishes! is doing better, no pain

today.

> Yesterday he had some fluttering, but it wasn't another heart

attack

> as he was afraid of. The doctor said it was his heart trying to get

> used to all the blood flowing back thru his stents.

>

> Thankfully the sleep folks at the hospital are hooking him up

tonight

> to test for sleep apnea. I've been telling him for about 6 years he

> needed to go to a sleep clinic. Luckily all the monitors he was

> hooked up to the last 24 hours picked up the apnea so they really

gave

> him no choice but to be tested. Now to get him to understand he

needs

> the machine so I don't lie awake counting how many seconds he isn't

> breathing and making sure he starts breathing again!

>

> He thinks he's coming home tomorrow or Tuesday. I'm in the process

of

> looking for heart healthy recipes because I'm not allowing him to

eat

> junk any more. He's going to be eating healthy and exercising even

if

> it kills me! LOL!

>

> Well, I must get some sleep because I've got a busy day tomorrow.

> Again, thanks for all the emails & thoughts/prayers, we really

> appreciate it!!

>

> Colleen

>

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Guest guest

Oh my God, Colleen. I am *so* very sorry for what you and are going

through right now. Sounds like you've got a good attitude about the whole

thing, though, and have a good strategy in place for when comes home

from the hospital and has to get healthier. I'm glad that they discovered

the sleep apnea and that he'll get treatment for that. I can't imagine

worrying at night when I couldn't hear my husband breathing! There are some

good heart-healthy cookbooks out there. We have some recipes, too. Let me

know whether you'd like for me to e-mail you some.

~nne :)

[blog] http://bathtubjunkie.net/

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  • 5 months later...

Mandy,

Hoping the nap you will feel less pain.

Crohns is not fun.

*Hugs*

Jo Lynne

quick update

the past three hours i been severe pain like i had when i was admited on the 10th without the sickness

though i feel sick too.

i'm due to take my meds in 45 mins if that doesn't help the pain i will be calling the doctor out to see me so i may or may not end up back in hospital. i didn't want to disappear without you know what is happening this time.

i'm going to bed now and hopefully its just asomething i ate not my crohns again

love

mandy

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Mandy,

Hoping the nap you will feel less pain.

Crohns is not fun.

*Hugs*

Jo Lynne

quick update

the past three hours i been severe pain like i had when i was admited on the 10th without the sickness

though i feel sick too.

i'm due to take my meds in 45 mins if that doesn't help the pain i will be calling the doctor out to see me so i may or may not end up back in hospital. i didn't want to disappear without you know what is happening this time.

i'm going to bed now and hopefully its just asomething i ate not my crohns again

love

mandy

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Mandy I am so sorry to hear that you have to see the doctor so quick again . That is a bummer. My hope & wishes go with. Take care & LOVE YOURSELF LOVELY LMay

From: amandanewell06@... <amandanewell06@...>Subject: quick update , Crohns , FIBRO_FROG , HomeHeartstrings , sherbaby2001@...Date: Thursday, October 23, 2008, 3:13 PM

the past three hours i been severe pain like i had when i was admited on the 10th without the sickness

though i feel sick too.

i'm due to take my meds in 45 mins if that doesn't help the pain i will be calling the doctor out to see me so i may or may not end up back in hospital. i didn't want to disappear without you know what is happening this time.

i'm going to bed now and hopefully its just asomething i ate not my crohns again

love

mandy

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Mandy I am so sorry to hear that you have to see the doctor so quick again . That is a bummer. My hope & wishes go with. Take care & LOVE YOURSELF LOVELY LMay

From: amandanewell06@... <amandanewell06@...>Subject: quick update , Crohns , FIBRO_FROG , HomeHeartstrings , sherbaby2001@...Date: Thursday, October 23, 2008, 3:13 PM

the past three hours i been severe pain like i had when i was admited on the 10th without the sickness

though i feel sick too.

i'm due to take my meds in 45 mins if that doesn't help the pain i will be calling the doctor out to see me so i may or may not end up back in hospital. i didn't want to disappear without you know what is happening this time.

i'm going to bed now and hopefully its just asomething i ate not my crohns again

love

mandy

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