CT scan - some thickening of proximal duodenum?

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Hey there. Hope you all had a great Christmas!

Jaime wasn't so bad on Christmas Day. She only vomited once, after dinner, but wasn't too bad.

Boxing Day, lots of pain. Yesterday lots of pain and bloody diarrhea. She called Oxford and was promised a call back, but nothing! GRRRRR. This is not normal for her, she thinks it may be overflow but not sure.

She does feel better today though.

One new thing she's been getting since Christmas Eve is a very red and sore tongue, which bleeds sometimes.
 
Red and sore tongue... I'd be checking for deficiencies.

It's a horrible situation when you think, she only vomited once is a good day :(
 
Catherine - no, but she has been getting some pins and needles as well. That was one of the symptoms last time.

I might ask GP if he can do bloods for her, considering her appointment with Oxford is March!!! :ybatty::ybatty::ybatty:
 
Okay. No call back from Oxford, but no more D over the weekend. No more BMs at all. Tonight however just dark red blood with no stool at all. So people what to do now?

She will call again in the morning, but what the hell is going on with her! She feels that she is being a pain by keep calling but this just isn't right or good! GRRRR :ybatty::ybatty::ybatty:
 
Niks,
I don't like that just blood comiming out is not normal. May be time for another trip to the ER. Please push them for a referral to that big specialist. I think it was at St. marks?
 
oh Niks,
that's not good, how much blood is she passing? its important how much, if it was just small amounts she still needs to be seen but larger amounts can be more worrying.
The colour gives you clues as to where in bowel it comes from, darker generally means it is from higher up, if its fresh bright red it can be caused by piles but as you say its dark it sounds higher, this is not good. l would ring again today if you don't get through to gastro DR go through hospital switchboard, main hospital number and ask for his registrar or senior reg to be bleeped this will come up on his bleep as an outside call he will have to answer it, so you will get straight through to his team then you must insist she is seen.
Best of luck
x
 
Pops she had a call today finally! I am now at my wits end. No one seems to be taking this seriously. She told him what was going on. He said that the pillcam showed her bowel looked normal, however it isn't contracting properly.

He suggested that if she doesn't have a BM for 3 days she needs to take citramag with senna.

WHAT??!!! Also her next appointment has been changed to the 25th March!

I have emailed Oxford. About her bone density, B12, possible pillcam retention, IBS diagnosis?! Bleeding. I have asked for an urgent referral to London.

They hate it when I e-mail, but what on earth is she supposed to do! Does this change diagnosis? Does this mean that camera even left her small bowel? Does it mean that if it didn't get far through her bowel that there could be more problems later in her bowel?

How can they just call and say that her bowel isn't contracting and take citramag, yep, we'll see ya at the end of March!!! LIVID!
 
how much did she bleed?, I am always amazed about how laid back my sisters team are about her bleeds they are at best debilitating and can be very dangerous if big. if she bleeds again either bleep team or take her to John Radcliffe A & E and get her admitted under her consultant. she needs Xray to check for pill cam.your gp can request xray get appointment Thursday for that.
 
how much did she bleed?, I am always amazed about how laid back my sisters team are about her bleeds they are at best debilitating and can be very dangerous if big. if she bleeds again either bleep team or take her to John Radcliffe A & E and get her admitted under her consultant. she needs Xray to check for pill cam.your gp can request xray get appointment Thursday for that.

Thanks Pops. She leaked a little onto underwear and a fair amount on toilet paper. She said just a little today.

I think getting GP to book xray might be a good idea. She really doesn't feel great so if there's any more bleeding will take her to A&E .
 
I truly cannot believe the nightmare you are going through.....May 2014 (finally) bring her good health.
(p.s. bring the underwear with you to Emergency)
 
Could u consider the posibilty of going private and asking to trial an IBD drug ? ( Consultation is around 150 pound and meds range from 12 to 50 per month )
Given jamies symptoms and response to pred I can't see any reason why they wouldn't give her medication ( u are paying after all )
An expensive start I know but provides some proof and hopefully some relief for jamie ?
The only reason I am suggesting this is I am in similar ( no way as bad as jamie ) situation, same markers,symptoms, ect but my NHS consultant has basically I won't get medication until crohns is undoubtably evident( eg operation time ) rather than a posibility !! So I'm still under ibs even tho I don't fit the ibs symptoms !
I asked if I went private if I would get to trial a drug she said they could give me something but she wouldn't recomend it ( her words to avoid law suits I guess ) !
Awful as this is this is t start of privatisation and we don't fit t tick box for further care on t NHS . God bless u and your daughter this situation is awful x
 
What would happen if you just showed up in London? Would they turn you away w/o a referral?

Niks,

That's what I did with my son Reed. I couldn't get a referral to our region's experts, so his pediatrician suggested a plan. I put Reed in my car and drove 2+ hours to San Francisco and became a patient of UCSF through the ER room. They did discharge my son because Reed wasn't claiming his true pain at the time; fortunately for us, we got a call back and immediate admittance to the hospital because of an abnormality on his CT scan. EVERYONE told me the initial mistake I made was not insisting upon a GI consult in the ER room (4 am- wasn't thinking straight). Had I done that, we would have been automatic clients of the GI department.

Are you allowed to insist on consults? Could you just stay put until you got one?

Good luck. This nightmare continues, and my heart goes out to you and Jaime, and to all your friends and family who are supporting you. I hope this year brings your family good health.

Kimberly
 
Does sound like the bleeding is not to great which is good, hope the laxative helps try regular laxatives for a few days and see if that helps her symptoms get her xrayed as priority. keep hassling them for earlier apt and straight back if she bleeds again. You poor things such a rough time.
 
She has agreed if she has any more bleeding that she will go straight to A&E.

I don't know if the Hospital in London has an A&E Department but will look into it! That is how she became a patient in Oxford, I just took her there!

Her actual GI has been away the whole of December, I am really hoping that when he gets back things will start moving.

Going private maybe a plan. I just need to work out where to take her, as the Doctor she is under right now also does private patients, I am guessing it is a good idea to start with a fresh set of eyes!
 
Personally, I don't find going private gets you any further. Same doctors, same brains. Just a higher price tag and a comfier waiting room.

Although I do find they will pay you more attention, do more tests, and keep you under review because it benefits them financially. It won't get you IBD meds, they still have to justify their decision whether private or not. Having said that, I get LDN privately, although that is not generally given on the NHS for anything other than addiction anyway. And it most certainly was not a GI who prescribed it for me!
 
I have found a company where I can get LDN. It doesn't seem to expensive. Jaime is really wary about taking something that her GI hasn't prescribed, but I think it might be worth a go!
 
If you take her any where take her to UCL. have you googled slow gut mobility it could be that she does have some of symptoms especially as GI said cam showed reduced peristalsis but she NEEDS to be seen earlier and start to get fit again, poor love.
 
I don't understand how the "yes, it was abnormal movement" and "we'll see you in March" fit together? The first says she has a problem. The second says she doesn't... Ugh! Why not offer some help for the dysmotility? I think an xray (your GP can order) to make sure she's passed the pillcam is a definite necessity...
 
URRRRGGGHHHHH. Just trying to find some information on using regular Citramag. This so far is the only advice she has been given, to take Citramag and Senna if she hasn't had a BM for 3 days. There really is no information but just found some of the DO NOT USE categories!
Not to be used in
People who are very dehydrated.
People with a blockage in the stomach or intestines.
People with an abnormal hole in the stomach or intestines (gastrointestinal perforation).
People with reduced muscle activity in the intestines (ileus).
People with retention of food in the stomach (gastric retention).

Jaime is often dehydrated and clearly has reduced muscle activity, just for starters! So now what?
 
She used citramag yesterday morning with senna. It finally came through this morning! She's gone to work. She thinks that Oxford get fed up with her or my calling/e-mailing and wants to wait to see if her GI comes up with a better plan, once he's back to work properly, without badgering him.

She has promised if she has anymore really horrible pain or bleeding she will go to A&E. I just think it is horrible waiting for that to happen :(
 
Good at last but am l right is that six weeks for the pill cam to pass, that's madness her gastro needs to know this and only passed with "nitro" behind it. I know where she is coming from but this is so not good that she is not going to be seen till march, if you don't tell them she has finally passed it six weeks after scope, they will assume that she passed it ages ago and did not notice. just ring sec and let them know she WILL start to back up again if nothing is done. sorry this sounds like a nag but so frustrated for you both canot belive they have let this situation continue. x
 
Sorry! I meant that citramag worked, but it took 24 hours to work through her. She hasn't seen the camera. It could have come out, but I think you're right that she needs an xray to check this.

Apart from one episode of bloody diarrhea, and bloody mucus, Jaime has not opened her bowels since her pillcam without citramag. This even for her is not good!

Just convincing Jaime to go back to the GP is not easy. I just hope that her GI gets back to her sooner rather than later. If I haven't heard by next week I will write to the Director or PALS.
 
Ok so back to stalker!

He was banging on door early hours of Saturday morning (I was sleeping in at work) J terrified, called her brother, then me, who told her to call 999. They had police, dogs and helicopters out, but didn't get him.

Tonight she ran through the door hysterical. He was crouched in bushes watching her. She immediately called 999, within 2 mins we had a police officer in the house. 11 police units around the area, police dogs and helicopter again!

They have a man in custody and are very positive that they have the right person, J has to go and identify him tomorrow!! Really hope it is him.

They are giving her a tracking device, so they know where she is and an alarm, which when she pushes button goes straight through to them and they send help! Also putting cameras up outside our house.

I am so impressed with the Police!!! I seriously wish our NHS was the same.

She has been in a lot of pain. I have had no reply from e-mail. J really doesn't want me to write a complaint. I have told her that if we haven't heard anything by the end of the week I am going to.

GRRRRRRRRRR :ymad::ymad::ymad::ymad:
 
No FW she doesn't know him. She can describe him and would recognise him, but is very scared!
 
Oh my goodness that is so scary, also that the police are reacting so quickly they must suspect this chap is bad news, lets really hope they have got him. has she had xray yet to check for pill cam it will also show up if she is bunged up behind it, you could just get her to call her GP, telephone consult and he could put form out, our local hosp has drop in xray service if you have GP form.
 
Bloody hell Niks! :eek2::eek2::eek2:

Poor Jaime. Little wonder she is scared witless, bless her. :heart: You must be overwhelmed by it all too. :ghug:

I hope you start to get some responses and answers soon!

Dusty. xxx
 
I know, they are reacting quickly, I think he has previous! They won't tell her what it is, which is probably not a bad thing!

She hasn't had an xray! She is trying to just 'get on with it' I don't know how long that will last. I really want to write to PALS or the Director, but she really doesn't want a fuss. She has agreed that if she has anymore bleeding, or pain gets any worse she will go to A&E, but not convinced she will tell me!

:eek:
 
How awful, poor girl. Glad the police seem to be doing everything they can! Hope it is him they have caught.
 
They have bailed him! I guess that means he has been charged, but we have no idea what his bail conditions are as yet. Someone is coming to see her tomorrow! She is really scared. :eek:
 
Oh no Niks! You must both be at your wits end. :ghug:

Thinking of you both. :heart:

Dusty. xxx
 
Niks,
Thinking of you and praying! I hope he is the right guy and they send him away for a long time when he goes to court!!!
 
Thanks guys.

No Jaime hasn't identified him yet. They may be doing that this week. (why it takes so long is beside me!) She has seen him on our street again! Police putting cameras in vases in my bedroom as it overlooks the street, and in the porch and kitchen on Monday.

Healthwise his week, she has managed to have a 2 BM's without using citramag! Her vomiting much better. Her pain still there but bearable. So what to do? Do I kick up a fuss? Or wait to see if things get worse?

Maybe she will continue to improve. I just hope so!
 
What does her dad say about this guy. Do all her friends and co-workers know?
Is she good about not going out by herself?

As far as getting better, that's great but.......................
Will it last,I hope so.

Hugs
 
If she is feeling slightly better wait and see but as soon as she has any signs of deterioration start ringing again, how worrying for you all with this nutter about hope he keeps away or gets caught on camera.
 
FW - her Dad is here as soon as she calls! He has been doing his own surveylance! He won't let her be on her own.

Jaime thinks the same regards the hospital. If she starts to get any worse then she will can and write! Fingers crossed she stays better though
 
Oh my Niks!!! Just catching up! :eek: Poor Jamie, as if she doesn't have enough to deal with! I'm glad she's not going out on her own but, terrible for her to have to live with this fear! :(

Thinking of you both!! :ghug:
 
Thinking of you Niks and wishing with all my heart that Jaime will be safe and she will soon have solid answers to end the suffering, bless her. :heart:

Dusty. xxx
 
Quick update.

Police have installed cameras. Jaime hasn't seen him this week thank goodness.

Healthwise, since last Sunday she has had a horrible stomach bug! Vomiting and diahrrea! Makes a change from constipation. She found it really hard to shake it off so had to go into local hospital yesterday for fluids.

She seems much better today and had a NORMAL BM!!!!

Oh and on Tuesday I broke my finger at work dealing with an incident with one of our very upset Young Adults! Great, now off with a splint on my finger. Been signed off for 2 weeks, the Doctor at fracture clinic wanted to sign me off for FIVE weeks!!! :ybatty::ybatty::ybatty: Nightmare.
 
Well at least you know pill cam must have passed! suppose cameras must make her feel more secure at home. hope she feel stronger soon.
 
Glad to hear about the cameras. Also glad she is feeling better!. Sorry to hear about your finger hope you heal up quick!
 
Niks,

Looks like I've missed quite a bit over the past few weeks. Not sure why I'm not getting email updates any more, but WOW...it's never dull for Jamie.

I hope she can find some peace soon...medically and with the stalker!

Cheryl
 
Since J's stomach bug she has been opening her bowels daily! In fact yesterday she was getting diahrrea. (6 times) So really not sure what is going on.

She looks washed out and aches from head to toe. Her back really hurts. Abdo pain always there but manageable. Just really really painful if someone pushes there, like Doctors like to!!

Vomiting only once or twice daily, so that has improved.

Finally after re-sending e-mail, got a reply saying 'It is not appropriate to e-mail!'. Jaime needs to call (she often doesn't get a call back)!! Grrr. Anyway, appointment has been changed to 11 February. Still a long time since her pillcam was put in at the end of November!!
 
If I was you I would send an stool sample off for culture in case the D & V bug was more than virus, campylobacter of other gut bug, L had episode of that so ill in fact Dr,s thought it triggered his Crohns. it could be that bug has stirred up her poor inflamed gut and that's why she is having such a rough time, glad apt speeded up but stll ages, if she gets worse take her to John Radcliffe A and E. has nutter stayed away.
 
Thinking of you and your girl Niks and wishing this nightmare would end for you both. :ghug:

Dusty. xxx
 
Thank you!

She didn't see him last week as off work sick, so not really going out of the house. He was around on Sunday night. The Police came to take the video footage from the cameras, but one not working, so they have just been round to fix it.

I really hope they get him soon!

I think she should do a stool sample too Pops. To be honest though it is so much better than chronic constipation!
 
I really get fed up of only posting bad things, really hope soon this will change!

She hasn't seen stalker for a while, I guess that's good, she has changed her car too.

She has been getting really bad abdo pain. Diahrrea, really horrible sweats. Today vomiting lots. (This has been on and off over last few weeks), but also lots of blood in vomit again.

She called GI Secretary. Her response was 'Call your GP or go to A&E' ARRRGGGHH. I really do need to get her a new GI! She has an appointment with GP this afternoon, however they really don't know what to do.

Her GI appointment has been brought forward to 11 February, however I actually don't even want to take her as I know that nothing will change and he will not be at all helpful. :( feeling pretty helpless right now.
 
Niks,
It is time to get out of that GI and go to the big guns! I Think you were going to check into St. Marks? I was reading up and them and they sound good. Speak with the GP and see if you can get a referral. They need to do something they can't leave your poor girl like this any longer!
 
How did the GP appointment go Niks?

How is Jaime? Have things settled down again?

Always in my thoughts and prayers. :heart:

Dusty. xxx
 
Hi Dusty, thank you

Yes things have settled down. Just really bad indigestion and burning.

She thought that it was probably another tear because of vomiting, advised if anything got worse to go to A&E. Luckily she didn't get worse!

xx
 
Thanks Pops, I have looked at him too. I am hoping that Oxford have referred her! We will find out on 11th xx
 
Hi niks, Do hope you get some help and answers tomorrow, how is you poor lass insist on referral to London, if he says pill cam normal check he had images of all through her gut and ask what is causing all these symptoms if l was you just keep asking for diagnosis. kx
 
Ok, we met with Jaime's favourite GI.

Basically there was nothing seen on Pillcam. He dodged the question several times about how far it had got!

He has prescribed Calcium Tablets and Vitamin D for bones.

He does not feel that she is Coeliac, so has told her to eat what she wants. To be fair she has been since Christmas! Gluten free did not help her at all!

He feels she is 'doing well' and carry on. He feels she will have some very hard times and she will have to battle through these, but nothing is showing as serious, so basically it's just what she has to live with!!

He did book full bloods, but she has to go and get them done locally tomorrow, because it was too late when we left.

Jaime is exhausted with everything and wants to leave London Referral. She feels that we will just keep going round in circles. She thinks she needs to live with this, and just hopes things ease off.

I just don't know. :confused2:
 
hmmm ... maybe nothing on images is appearing serious, but the blackouts/falling and severity of GI symptoms which cause her electrolytes to be way off sure seems serious to me. I do hope things improve for Jaime!
 
Oh my goodness b***** doctors just because they don't know what is wrong with her they say there is nothing wrong unbelievable, the symptoms have not come from nowhere apart from anything else the damage the malnutrition is doing to her body needs to be addressed calcium tablets ahhhh that poor girl and you. Give her a few days niks then broach the subject of second opinion with prof Forbes at UCL l don't now if you could manage an private appointment most consultants know if you don't have heath ins they will let you revert back to NHS if you need tests/treatment its so hard you cannot let them give up on her.
Heart goes out to you all
x
 
Ok, we met with Jaime's favourite GI.

Basically there was nothing seen on Pillcam. He dodged the question several times about how far it had got!

He has prescribed Calcium Tablets and Vitamin D for bones.

He does not feel that she is Coeliac, so has told her to eat what she wants. To be fair she has been since Christmas! Gluten free did not help her at all!

He feels she is 'doing well' and carry on. He feels she will have some very hard times and she will have to battle through these, but nothing is showing as serious, so basically it's just what she has to live with!!

He did book full bloods, but she has to go and get them done locally tomorrow, because it was too late when we left.

Jaime is exhausted with everything and wants to leave London Referral. She feels that we will just keep going round in circles. She thinks she needs to live with this, and just hopes things ease off.

I just don't know. :confused2:

How sad. I just don't even know where to start with that. Just live with it? TBF I got told the same thing years ago when hospitalised. It was only 5 years after my symptoms started my tests started showing positive for IBD. You can't give up, if you don't have hope you don't have anything imo.
 
Hi! Im so sorry you are all suffering!! My son went undiagnosed for years with episodic severe bouts of vomiting. Bloods were always perfect, and even my son's MRI showed nothing "remarkable" except for thickening of the duodenum. The Dr was not going to investigate further, but I pushed for an upper Gastroscopy which ended up showing severe CD in the duodenum. Go get that second opinion. Good luck to you! I hope you get some answers!!
 
Hi. Thanks everyone.

She isn't doing too bad! Ferritin low, but other than that better than she has been for such a long time.

Not vomiting every day! She has had a fair amount of bleeding and still needs a lot of sleep, but pain much better and she isn't constipated at the moment!!

Just have everything crossed that she Continues to feel better.

Thank you Pink. I am glad you finally got things sorted for your boy. If any of J's symptoms get worse again I shall be pushing for another opinion.

Xx
 
I am so glad Jayme is doing better! I hope she never has to go down that road again. She getting iron infusions or is she not that low? Praise God for some relief for her!
 
Hello Nike
How is Jaime?
Hopefully continuing to feel better
It is incredible how time has marched on and you have so little to show for it.
Unbelievable that Oxford was not helpful.
Any more thoughts on St Mark"s ?
Hugs
Trysha
 
Hi everyone

Jaime has still been much better. She has only had the odd day of sickness. She is taking iron and vitamin D supplements.

She is still getting tired, but much better, has gained a little weight too. So unless things change going to leave well alone!!

I just hope this isn't going to be a pattern. She had a bad flare at 15, which lasted around 4 months. At 17 for about 6 months and 19 well over a year!

Really hope that what ever is going on is now over with! Her bowels are better, she is going pretty much every day.

I really hope that all of you guys are doing well xxx
 
Hallebloodylujah! :dusty:

Fingers, toes and everything else crossed that this lasts a very long time Niks. :heart:

Dusty. xxx
 
Hey! Haven't been on for so long! Hope you and yours are all doing okay

Jaime has been doing great..... Until this last few weeks! Vomiting creeping back in. And back pain. Abdo pain always there but not severe.

I had a call from her boss on Tuesday, saying she was in agony and had passed out twice in 5 minutes. Back to A & E. Her pain was in her left back kidney area, it was so severe that she literally struggled breathing, her pulse rate was going up to 190. She was passing out every few minutes. She was hysterical when she was conscious. We thought it might be another kidney stone, but no blood in urine this time and no infection. Bloods as usual all fine.

After about 3 hours it died right down and they sent her home. Only for exactly the same thing to happen on Wednesday! This time they put her on gas and air. Couldn't get a drip in, her veins just kept collapsing. They did do an abdo xray to discover that although she thought that her bowels were working fairly well, that she was extremely backed up. So we are now 2 citramag and 6 senna later, a lot of vomiting and feeling absolutely dreadful, That extreme pain has not returned though. Can severe constipation REALLY cause this much pain?? I cannot find ANYTHING that is as extreme as she seems to suffer :(
 
Oh niks,
poor love so sad its back l have been thinking a lot about her lately, my brother inlaws niece is very poorly early twentys very similar symptoms to Jamie severe pain conspation obstructing severe weight loss, uninary retention, had masses of tests, they think its gut failure caused by an area ?size which has no nerve supply so no peristalsis. she is waiting bed at UCL. L in for inflixi today so asked his gastro nurse she though it could be Hirschsprung's disease usually diagnosed soon after birth but if history of childhood constipation can not get diagnosed till early adulthood. worth looking up. do hope this helps my heart goes out to you.
Time to get referd to proff forbes at UCL
Pops xx
 
Thanks pops. She really had no problems at all until around 15 and then was thought to be gynae, so no bowel investigations until 18. I have been searching and searching trying to work it out, but all they can come up with is IBS.
 
Your niece seems to be getting further than us!! How are they treatting her? Hope she gets sorted soon too xx
 
Look it up it maybe worth mentioning but l think she needs to be seen in London enough is enough. El was on pethidine for days with the pain sounds so similar.pops xx
 
Cheers for the nice long stretch of feel pretty well! It's important to celebrate those little victories!

Too bad it wasn't longer lived. I'm so sorry Jamie is feeling poorly again. I hope both of you are able to quash it more quickly this time around.

Best wishes and prayers.
Cheryl VT
 
It is so fab to hear that Jaime had a break from all the crap she has been through Niks :) but how awful that it is all raring its ugly head again. :(

Sending much love and loads of luck that you soon have answers for you lass. :ghug:

In my thoughts hun. :heart:

Dusty. xxx
 
Professor Forbes at UCL used to be my consultant, lovely man. I now see Dr Nightingale at St Marks where I have been going for 30 years. I can ring my IBD nurse anytime and they will get back to me. I think you need to push for a London referral, i like being at a specialist hospital because everyone knows what you are going through.
 
Niks,
So sorry to hear that this has come back! I hope you guys are finally able to get a referral to the big guns! I am glad she had a break for a bit but sorry it was only short lived. It is so frustrating! Sending you both a big hug!
 
Okay, sorry not been on here for a while, been absolutely mad at work.
Jaime not been bad, but has a broken rib, is black and blue! She has no idea how she did it, (she doesn't drink). The Dr thinks because of weak bones it could have even happened in her sleep! Great! She says it isn' t really painful (2-3 out of 10)

Anyhow the last few days, for the first time in months she has blood in toilet!

She showed me lots of blood that had dropped to bottom of the toilet with some very big floating clots. (bright red)

She feels okay though and she has also retained the weight she gained. Urrrgghhh, just hope it's not starting all over again!

Hope you guys are all okay, just going to go through posts xxx
 
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Thanks for the update Niks. :ghug:

I am so sorry to hear about the broken rib. Ouch! :(

I hope this latest episode with blood doesn’t augur a setback. Fingers, toes and everything else crossed that lady luck is on Jaime’s side!

Thinking of you. :heart:

Dusty. xxx
 
I fell over last year and damaged my ribs, one of the most painful experiences ever. I had to roll in and out of bed for well over a month as it hurt so much to move. Poor Jamie, as if she doesn't have enough to deal with. I hope she recovers soon and there isn't a nasty flare starting. :ghug:
 

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