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Do you need a hug ?

C

crohnsinct

Well-known member
Artisan: Wow. That really touched me. That is an awesome lesson for our kiddo's. I am going to show your post to my daughter. I am sure she is just like you!

Kimmidwife: How awful! I really hope the person stopped. There have been a string of hit and runs around here lately. The hitting wasn't on purpose but the running certainly is. So, so sad.


Forever Crohns and Aracelli: big Italian NYC hugs to you both too!
 
Niks

Niks

It's a really sad day, one of Jaime's very good friends died this morning, she was only 19. :cry:

She has leukaemia as a child, the treatment ruined her major organs. She chose to stop dialysis after several transplants. Such a brave young lady.. We need a hug :(
 
DustyKat

DustyKat

Super Moderator
Oh Nik, that is so sad. :( What a difficult decision to have to make at such an age. She must have been an amazing and inspiring young woman. :heart:

Dusty. xxx
 
Hope345

Hope345

Niks,

Sending so much support and love to you and your daughter. She has been through so much at such a young age.
 
Artisan105

Artisan105

Yondaime
I wish everyone the best. Here is a huge HUG! I know it might be weird getting hugs from strangers but think of us as family :]

Yea I know everyone must be tired from battling this disease everyday. There always seem to be a misrepresentation of how we feel and how we look to people. Since most of our pain is inside no body really knows how much it hurts us. People always say you look great (When not flaring -when we lose a lot of weight, or just recovering- when our face is like a hamster from the steroids), or they always say I want to be thin like you, I am sure it bothers you like it bothers me. Also when they say, "I understand what you are going through," LOL I am going off tangent.

Anyways here is a HUG to everyone who is tired of fighting. Who is tired of looking normal but struggling to get through each day. Who is frustrated with the sudden weight loss. Who is unhappy with the weight gain from the steroids. Who is upset with their doctors who don't understand. Who is pissed off because gluten-free is a common word in our diet. LOL

Hang in there everyone :] Always remember to thank your close friends who understand. Always say I love you to family- they will never let you down.

Much love & grace.
 
C

crohnsinct

Well-known member
Hey guys. Just asking for some hugs for my friend. Don't know why. Maybe because I feel so helpless. She is the mother of a 21 year old autistic boy. She applied for a spot in a group home thinking it would take a few years and it came up within a week. Neither of them were ready. He moved in today and they are both heartbroken. She knows it is best but it is so difficult. Her house is so quiet. I told her all you guys would pray and send her hugs. I told her I would come over with a case of wine!
 
kimmidwife

kimmidwife

Just felt like sharing a hug with everyone. My husband had knee surgery today ( he got injured at work) and it is a big relief that it is done. Now I just hope it worked and he will recover well with out any more problems.
 
Farmwife

Farmwife

crohnsinct I pray you friends son does well.

Kim I hope your hubby feels better soon. How long until he can get around?
 
my little penguin

my little penguin

Moderator
Staff member
Just need to make it to Friday
Tonight marks night three where DS needed zofran
Screamed so much added hydrocyamine as well.
Pain decreased but it made him zonk out.
So no school work done .
Ugh....
Calling Gi in am .
He was so good for so long
 
C

crohnsinct

Well-known member
Thanks guys! My friend and her son are doing fantastically well. She even hung out wit the gals all day the other day. I told her about you moms (and dads) out there hugging her. She was so appreciative!

Hugs MLP! Hope the GI had pearly words of wisdom.

Kim: ugh nursemaid to hubby can be tough sometimes. Hugs to him for feeling better and to you!

HUGS to the families in Ohio!
 
Twosons

Twosons

My son is being admitted tomorrow morning for full bowel rest. Praying this brings him relief and that we can get him on the right path.
 
ChampsMom

ChampsMom

Location
North East Coast - USA
Sooo... I spent Monday night in the hospital. Me. Alone. No kids.

(End story is good!)

But I was rushed from work to the hospital - thought I was having a heart attack. Entered the ER with my pulse over 130 and my blood pressure at about 200/120 - it was *crazy*!!

After an ekg, chest xray, CT w/contrast - they ruled out the immediate fears, but couldn't figure out why pulse continue to race 100-110 for about 2 hours before coming down to 80 - 90 bpm, and blood pressure sitting at about 181/79 for the same time period.:yfaint:

Kept me over night - ran a night long ekg, did an eeg, also a echnocardiogram, stress test and a stress test with nuclear iso (something)...

Results? I have paroxysmal atrial tachycardia - aka spontaneous heart racing... I go from normal to really fast for no reason at all. No reason at all they said?! Have you lived a day in my life, I thought... laughs..

I told me Mum that it would figure, my heart is like me... ambitiously lazy... hurry up to do everything we have to do, so we can sit back and do nothing for a while!

Oh well... Now I'm on beta blocker so it doesn't happen again.

Funny thing, the Cardiologist was asking me a ton of questions (everything from health history to personal family situation, kids, work, "what does a day look like in your life...") and when I was done, he looked *shocked* and said,... "You have to be the busiest person I've seen." If I hadn't been sitting there in 2 gowns, with ugly yellow hospital socks, without a comb for my hair, not have seen my kids in 15 hours with only 2 hours of sleep, I might have laughed... :lol2:

Good news is my heart is rock solid (outside of being ambitiously lazy) and all my other blood work is AWESOME!! First time I've been to the doctors for myself in about 2 years.
 
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Farmwife

Farmwife

Sorry, feeling like I need a hug.
Here I am this Mother's Day at home taking care of Grace which is into another flare.:confused2:
My Hubby and son will be going out to eat without us on Mother's Day.
I know it's not Grace's fault.
I was just hoping for a good time with the whole family and poor Grace was so looking forward to it also.:confused2:
 
my little penguin

my little penguin

Moderator
Staff member
Hugs
FW
We always have food brought in( food allergies and now crohn's)
The day is about family not food so togetherness is what is needed.
Tell you DH to get takeout. It's your day
 
Farmwife

Farmwife

Thanks MLP.
We have a WHOLE family gathering. All the men in the family takes all us mom's out to the restaurant. We mom's eat while the men handle the kids. We love it!
I want the hubby and son to go. It's always a good time.
Plus, Grace has been put on bed rest. So having it quite for awhile is a good thing.
 
Hope345

Hope345

Sending hugs and support to all of you wonderful mothers.
You are doing what you do best, taking care of your children.
I pray your children will find the treatments they need and know they are all loved so dearly by their mothers.

Flowers to you ALL!!
 
Crohn's Mom

Crohn's Mom

Moderator
Right there with you Farmwife :(

JJ has broke out with what we think is chicken pox yesterday, and then today I had to work, and Gab texted me to tell me she's calling into work today because now she has the chicken pox too ! ~ she and JJ were both vaccinated years ago, AND Gab has already had a major case of the pox about a year after her vaccination ~
Oh happy mothers day to us all ! LOL
 
Farmwife

Farmwife

Hugs Twiggy


The good news it that my hubby brought home his prime rib which I happily gobbled up.
Now off to sew a quilt before Grace starts crying because she has to poo.
Oh what fun awaits.
 
Ands

Ands

Location
Somerset, UK
Need a hug! Came home from school parents evening last night where all teachers love J, looks like he is in top percentage of academic students in his year group and no one had anything bad to say about him. Then, second we walk in door tiredness takes over and he hits rock bottom, so so mentally low. It is like he is two different boys; the one where he puts on a smile and pretends all ok, then the one behind closed doors where he can't cope with anything. We are so worried about his mental state. Got an appointment to have him assessed on 10 June, so not long. I begin to question what is real pain and what is in his head and I hate myself for doing that.....

Any hugs greatly appreciated. Xxxx
 
Tesscorm

Tesscorm

Moderator
Staff member
So sorry you have to see him like that!! It's so hard when you can't make things all good for your child! :( It may not be what's in his head or not... when he's out and with other people, he may be distracted enough that he's able to go, go, go. But, once at home, not only are the distractions gone but he's now in a 'safe zone' where he can just let go... and, being with you, most likely also gives him comfort and that is when/where he looks for it. :ghug: I hope he's okay until the apptmt and that you get some guidance then.
 
Farmwife

Farmwife

Ands it makes sense. I believe Grace puts on a front for others. Even at 4 she tries to keep up and run and laugh. Once home she also crashes. We're moms! We're the comforters. They feel like they can show you us what they can't show others. They know mom will be there and hugs/kiss/talk to help them over the hard times. We're moms! It's what we do. Your such a good mom and you've been doing great. HUGS
 
Jmrogers4

Jmrogers4

I think that is totally normal, even my non-ibd kid saves it for home. I always here about how polite and well mannered my children are. We laugh when they come home because they couldn't possibly be the same kid. It is that safe environment. Even when they push all our buttons they know we are going to love them and do our best to keep them safe, even if it is just cuddling on the couch when they are not feeling well. They would never do that in front of their friends
 
chefmommaof6

chefmommaof6

Giving lots of hugs away, and I need a hug today too. My son has been laying on our couch in pain for a month. We are supposed to start Remicade infusions tomorrow, and I am in knots. Just trying to pray and trust God that He's got this. Thankful for these boards, which have been such a blessing over the last few months.
 
ChampsMom

ChampsMom

Location
North East Coast - USA
Hey chef...

Was reading about your challenging decision - it's just awful that we have to make decisions like that...

As a woman of faith, my thoughts and prayers are with you and your family as you go through this.... and I pray for the best results for your son that he will feel better and you all will endure through this difficult time...

(((hugs)))
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I don't usually find much comfort in cyber hugs but I could use some now. My son is having issues with antibodies to his humira. The doc wants to preload each weekly dose with 20mg pred and add 15mg oral mtx. How much more can he take?

And Shell, I have no great faith, but I do still pray! My mother and younger sister are great believers and I know they pray daily for EJ. We'll take all the prayers we can get:)
 
Tesscorm

Tesscorm

Moderator
Staff member
Chefmomma - I hope the remicade goes well and brings him some relief quickly!!! :ghug: While remicade can sometimes take a bit of time to show results, I've also read of many here who have had relief quickly from it! I hope this is the case with your boy!

Dexky - so sorry to hear! It's always tough when there's a change and we have to, once again, deal with new worries!!! I didn't know you could build antibodies against humira??? I hope EJ feels well with the change and it resolves all issues! :ghug:
 
Jmrogers4

Jmrogers4

Dexky - sorry to hear you are having to make a change hope it all goes well
Chefmomma - Hope the remicade works wonders and quickly!
As always hugs, prayers and support to you all.
 
DustyKat

DustyKat

Super Moderator
@Ands - I totally agree with home being their comfort zone. I had issues with Matt many years ago (primary school) and that is what I found with him. Home was the place to allow all those feelings and frustrations out whilst knowing that the people that surrounded you loved you unconditionally and wouldn't judge but rather would hold you until the hurt settled. :hug:

Dex and chefmomma - sending loads and loads of love and healing thoughts your way too. :ghug:

Dusty. xxx
 
Hope345

Hope345

Hugs to all of you and your children.

chefmamma: I know starting something like Remicade is such a big decision. We also asked the Lord to guide us and it wasnt until the 8th treatment that she is symptom free. He knew all along it was going to happen and here we are. I hope it works for your son as well.

Ands: We are blessed that our chiildren are polite and try to put on such a happy face for others. But sometimes everything does come crashing down on them. As a mother we can question things, because thats what we do. But we are also their biggest supporters. Do not kick yourself for questioning what is going on. I have done the same thing. I talked to my daughter about it, and I knew she would be honest with me about how she was feeling and never fake not feeling good. I told her trust was one of the most important attributes we had to have. I pray your son finds what he needs to make him happy and healthy.

Often their hormones, medications and fatigue get the best of them. My daughter wrote her thoughts down and it was clear she was not a happy girl. Crohns had taken away from her, the life she had known and thrown her into bed for a year. she was sad and lonely and trying her best to make the best of it. Shortly after that, she made the dance team is now looking forward to starting school in the fall. I just need to quite worrying and enjoy the ride. But as moms, we tend to worry about EVERYTHING!!!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
?? He's been having raised bump rashes after his injections that respond less and less to otc allergy meds. He had bloods drawn a couple of weeks back specifically (I thought) because of this. The gi said he had developed ab's. I don't know MLP!! Hmmm?

His Sed and CRP were and have been normal for quite some time. I hate these meds but I want to hang on to them as long as possible.
 
S

Spooky1

Well-known member
Location
South Northants
loved that comment. But in all honesty, we all put on a front for others. At least we can be ourselves at home. Its utterly exhausting putting on that 'i'm happy, i'm ok' face and being anywhere other than home is hard work.
 
my little penguin

my little penguin

Moderator
Staff member
The antibody test for humira is only approved for research.
They could have drawn trough levels to see how much humira was left in his system and then base the decision on that. The few papers I read lower levels seem to correlate with antibodies .
Thankfully those antibodies are less likely to cause allergic reactions.
But once antibodies are there it is hard to stop them and reactions only get worse.
We tried the steriod route for DS and remicade .
It didn't go well.
Hope it works for your son
 
Brian'sMom

Brian'sMom

Location
Midwest
Dexky said:
?? He's been having raised bump rashes after his injections that respond less and less to otc allergy meds. He had bloods drawn a couple of weeks back specifically (I thought) because of this. The gi said he had developed ab's. I don't know MLP!! Hmmm?

His Sed and CRP were and have been normal for quite some time. I hate these meds but I want to hang on to them as long as possible.
Click to expand...
Dex, I know they said he has antibodies but just thought...have they said anything about moving the injection spot from his legs to a different area? Is the stomach still the only other place to inject? We keep a journal and note as best we can where we inject into the leg so we can switch it up. (Upper middle, Middle, lower middle then the same three but to the inside, then to the outside,etc making 9 places on each leg) I'm sure you do this too. Maybe his legs need a break.
We got sent to a dermatologist several months ago because of skin irritation stuff on DS's butt cheeks. Now I have some steroid ointment we apply when it comes back...which is often. GI thought it was psoriasis from the Humira, Dermatologist doesn't think its psoriasis but might be from Humira and can be fixed topically.
 
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Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Thanks Kathy, all we've ever really done is switch from leg to leg. Maybe, since going weekly, that isn't enough of a break for injection locations.

We still are holding off on mtx. EJ took the pred before his last inj., on Thursday night and, knock wood and pray, no bad itchiness.
 
kimmidwife

kimmidwife

I need a hug today. :( I am so sad about Caitlyn having this new diagnosis. It is just so rough we thought things were finally under control. Now we have a whole new set of issues to deal with. I just am feeling so down right now.
 
Farmwife

Farmwife

kimmidwife said:
I need a hug today. :( I am so sad about Caitlyn having this new diagnosis. It is just so rough we thought things were finally under control. Now we have a whole new set of issues to deal with. I just am feeling so down right now.
Click to expand...
I can say with absolute heartfelt assurance that I know how you feel.:confused2:
It doesn't matter if we kinda, sorta figured it out already, it still makes it so hard.

Hugs, hugs, hugs.

Feel free to send some hugs my way tonight.


:cool2:Off to the chocolate cake.
 
Mj1gaynor

Mj1gaynor

Location
Ct
Sending Hugs kimmidwife. I agree we all can say with that we have all had moments that we may have felt to one degree or another what you are feeling. Sometimes we need a minute to realize we have feelings and give ourselves time to have emotions.

Then before you know it we think of our children and how much we love them and that motivates us even more to helping them! Sending lots of hugs to you!!!
 
DustyKat

DustyKat

Super Moderator
Sending MEGA loads of big squishy hugs to you Kim and FW.



Thinking of you both and your beautiful, amazing girls. I have no doubt in my mind that they make your hearts sing every time you look at them but that only makes the heartache and heartbreak all the more painful and intense. :ghug:

Dusty. xxx
 
kimmidwife

kimmidwife

Thanks Dusty! You are absolutly right. I did start a new thread in the EIM section about the gastroparesis and a couple of people responded and gave us some advice. Hopefully it will be helpful.
 
Tesscorm

Tesscorm

Moderator
Staff member
I'm so sorry you and Caitlyn are having to face this new diagnosis. I hope you get a plan to control/treat it soon! She's been through so much, she truly deserves a break to have a long period of being painfree! :ghug:

Maybe I've missed it but were you given an plan or guidance as to how to get her feeling better?
 
kimmidwife

kimmidwife

Hi Everyone,
I am so down in the dumps today. I am feeling so hopeless. We finally get this darn Crohn's under control and now are struck with this new illness. I am trying to be strong for Caitlyn. But really I just feel like crying. The more I read about this illness the more upset I get!
:(
 
Tesscorm

Tesscorm

Moderator
Staff member
I'm so sorry Kim. I can only imagine how upset and frustrated you are feeling. Just sending lots of hugs! :ghug: :ghug:
 
my little penguin

my little penguin

Moderator
Staff member
Big hugs
New dx are rough
Give yourself time to grieve
And come up with a plan just for her
It will get better
Until then trashy novel chocolate and quiet time are in order for you .
 
greypup

greypup

Location
St. Louis, MO
Hi. I need a hug too.

M has cystic acne that got worse while on EEN. She is now beginning Accutane.

My husband who has had surgical infections from a knee replacement a year and two months ago was supposed to have a new knee replacement surgery this week - Dec 26. The orthopedic surgeon just cancelled his surgery this afternoon b/c his sed rate is beginning to climb again.

In total he has had 8 surgeries on his knee. He currently has a cement spacer in place of a knee and is confined to a walker, no driving since Aug. He is crushed in that the infection might be re-emerging.

I know the drugs are the best thing for M and that delaying surgery is the safest thing for my husband, but he**@!(@!!, they've been thru so much.
 
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