update

[Guest guest]

Hey Donna,

I hope things are better today for and for you.

Veri

Re: update

Good luck to you all. I'll keep you in my prayers.

le & (7) RF+ poly-JRA, Raynaud's, linear scleroderma

>

>

> I am hangin Veri, just a bit tired, confused and fustrated. This was suppose

to be minor surgery and he was suppose to be back to school this week. We simply

dont understand!

>

> Donna

>

>

>

[Guest guest]

ok ...we are still at the hospital. UGH! had his 3rd surgery Sunday and

more cleaning out was done, antibiotics put in as well as a drain. Doc was a bit

concerned with some bleeders in his knee and tried to cauterize them only to

find the tissue was very fryable but not sure why just very rare for an

otherwise healthy teenager. Tests are being done for that. Antibiotics were

changed, fevers have stayed for 24 hours now and he has slept a bit and ate some

grapes so even though we are moving forward slowly WE ARE MOVING.

ooo!!!!!!!!! We will likely be here another day or two and then a pic line

will be put in and we get to go home with home health.....I so miss my bed, my

critters and real food but Matt is loving not having a parent in the home. uh

oh! Til next time.......hangin tight and tough!

Donna

[Guest guest]

What an inspirational update....I love your attitude - I know every bone in

your body must be sore.

Stay strong, Donna.

~osh

[Guest guest]

Thanks for the update and sharing your frustrations with us.? Know that we are

here for you and praying for you all.? You are doing a great job I am sure and

getting mad about this is so normal.?

Veri & Jaye 15 poly

update

Although we are home and in the comforts of no alarms, IVs, nurses and doctors?

or?poking and prodding we continue to fight this damn infection. will be

better one minute than not so great the next. The docs warned of peaks and

valleys and explained this battle as not a sprint but more of a marathon and

only time and treatment will get us to the goal we desire. remains weak

and has little appetite but all in all he is getting better. Not being the most

patient of persons I want him better now, as I know all parents who watch their

child get sick do.??

I never ever seen myself on this side of the fence. I am usually the sick one,

the one who needs various surgeries, therapies, treatments, etc. I am the one

usually being tended to and helped along the way. I never seen myself doing this

type of physical therapy with my child and watching him work through the pain.?

Hooking up CPM machines, filling polar paks, checking temps, delivering pain

meds and I never imagined myself giving infusion treatment not once but 3 times

daily. Saline, antibiotic, saline again?and heparin for a total of 4 syringes, 3

times per day. I am the one saying come on you can do it, you have to do it, you

cant just give up and the list goes on.? I have had many battles of my own and

keeping up with and treatments may not be easy on my body but I am here

for him til the meds run out, the therapy is complete, the knee is in 100% shape

and the infection is 100% gone.

If I have learned anything, which I have learned alot from this experience, it

has been I so admire the parents who I chat with so often about the battles

their child faces with JA. I truly know how incredible you are as you fight the

tears, argue with your child, and watch their young bodies go down hill then up

again. I respect so much what my mom (and dad) have done for me over the years.

I now know it wasnt an easy battle for them either. Hanging tight and hanging

tough has taken on a new meeting as I help through his nightmare. There

is also the psychological side...being scared, sad, mad, yet feeling blessed he

has made it through and will be ok. I still, am so angry at the original

hospital and for these facilities that allow?passing something along like to

innocent people, especially my child. I feel hospitals should be held

accountable. You hear way too much of this and sometimes with near fatal or

fatal results. So as I wrestle to get him well I also battle the

thoughts in my head. The who, why, and where of it all and what can be done to

prevent it again.....

As I am Hangin tight and extra tough I hope you are all doing the same....

Donna

[Guest guest]

Glad to see the update on , but I am sorry to hear about her jaw. Please

let us know when she is going in and how it all goes.

I understand about refusing the meds, and I totally know the relief you are

feeling that she is back on and hopefully stopping any more joint damage. How

brave of her to do them herself. These kids are warriors and really an

inspiration. How they just get up and keep dealing with all of this stuff is

beyond me.

Let us know how she is doing when you can, Michele ( 22, spondy)

________________________________

From: [mailto: ] On Behalf Of

quacksmum

Sent: Wednesday, September 09, 2009 6:33 AM

Subject: update

Hi guys,

Its been a while since i posted, mainly due to having no time and utter

exhaustion....

Alot has happened to since my last post...

We have been told that the arthritis has stopped her jaw growing at all and the

TMJ has deteriorated to a point that in a few months she will be having a total

jaw replacement...

She has had 3 arthrocentesis this year to the jaw and also steroids into her

elbow as its partially fused and we are led to believe that she will be having

steroids packed into her TMJ joints every 6-8 weeks, she had 2 lots in 3 weeks

and she is doing well on them

She is also back on her Enbrel, she had been refusing injections for such a long

time they put her on Infliximab, but that wasnt working for her... so a few

months ago they gave her the ultimatum, either comply and take your enbrel or we

remove everything and wait until you agree.... THANKFULLY it worked well and

voila not only is she back on the injections, but she's also doing them herself

!!! I cannot say how proud i am of her or relieved LOL... oh and her arthritis

has settled down for the first time in 3 years... but if she missed one of her

2x a week doses it starts to flare badly!!! so we dont miss meds ever now !!

I am glad to hear Bayly is getting the joint injections, we too use wrist rests

after her wrists are done as her surgeon likes the joint to be rested for 48

hours after injection...

Can i also say how horrified i am that the poor wee girl had her injections put

back, how horrid those doctors are !!! Wish i could give the mum a hug and say

it will be ok...

SW Scotland

Mum to aged 13 enthesitis related arthritis and psoriatic arthritis HLA

B27+

please visit my blog www.quackas.blogspot.com

[Guest guest]

Hi ,

So glad to hear that is taking charge of her own Enbrel

injections! That is AWESOME! Congrats and kudos to your brave and

lovely girl!!

My darling niece was diagnosed with Type 1 Diabetes 6 months after

Bayly's JIA dx (in 2003), and she was doing her own insulin shots 6

months later, at all of age 8! We were so proud of her. She's also

made the decision to have an insluin pump installed soon, and again we

think that's a very mature thing to do.

I have been wondering at what age you can finally negotiate with your

child to take responsibility for their own treatment...by that I mean

exactly what the doctors said to - do this or do nothing, and know

the consequences. Bayly's reaching an age where he can argue and refuse

to do things, including medicine, so it's a challenge!

Luckily he was much more accepting of the whole process on Tuesday, and

his wrist is definitely on the improve! Yay!!

Gosh, we all have great kids, don't we?!

Jo

Bayly, 7, extended oligo

PS: Has seen our new social network site?

www.juvenileidiopathicarthritis.ning.com

<http://www.juvenileidiopathicarthritis.ning.com> There is another 13

y.o. girl on there looking for for a pen pal! Perhaps they could share

together...? (I think her post is in the Blogs section)

PPS: I'm going to check out your blog- mine's at

www.veebeejay.blogspot.com <http://www.veebeejay.blogspot.com> []

>

> Hi guys,

>

> Its been a while since i posted, mainly due to having no time and

utter exhaustion....

>

> Alot has happened to since my last post...

>

> We have been told that the arthritis has stopped her jaw growing at

all and the TMJ has deteriorated to a point that in a few months she

will be having a total jaw replacement...

>

> She has had 3 arthrocentesis this year to the jaw and also steroids

into her elbow as its partially fused and we are led to believe that she

will be having steroids packed into her TMJ joints every 6-8 weeks, she

had 2 lots in 3 weeks and she is doing well on them

>

> She is also back on her Enbrel, she had been refusing injections for

such a long time they put her on Infliximab, but that wasnt working for

her... so a few months ago they gave her the ultimatum, either comply

and take your enbrel or we remove everything and wait until you

agree.... THANKFULLY it worked well and voila not only is she back on

the injections, but she's also doing them herself !!! I cannot say how

proud i am of her or relieved LOL... oh and her arthritis has settled

down for the first time in 3 years... but if she missed one of her 2x a

week doses it starts to flare badly!!! so we dont miss meds ever now !!

>

> I am glad to hear Bayly is getting the joint injections, we too use

wrist rests after her wrists are done as her surgeon likes the joint to

be rested for 48 hours after injection...

>

> Can i also say how horrified i am that the poor wee girl had her

injections put back, how horrid those doctors are !!! Wish i could give

the mum a hug and say it will be ok...

>

>

> SW Scotland

>

> Mum to aged 13 enthesitis related arthritis and psoriatic

arthritis HLA B27+

>

> please visit my blog www.quackas.blogspot.com

<http://www.quackas.blogspot.com>

[Guest guest]

Donna,

Sorry things are not going well for yet. We will continue to keep him in

our prayers and you also.

Veri & Jaye

update

just when ya think..

been another trying day, has adhesive sensitivity and not once, not

twice but three times since being home his PIC line dressings had to be changed

with our last option. He blistered and had a rash so it had to be changed AND

his knee is warm tonight with the wounds showing redness that wasn't there

before...keep all positive vibes and prayers flowing for him. PLEASE...

Donna

[Guest guest]

Donna,

Is being seen by your ortho or by an Infectious Disease team? If just

the ortho I would recommend that an ID team be brought in. Sorry to hear about

the tape sensitivity. Ouch! poor guy needs a break.

e

From: ajaoky@... <ajaoky@...>

Subject: update

ajao_young_adults ,

Date: Thursday, September 10, 2009, 7:41 PM

 

just when ya think..

been another trying day, has adhesive sensitivity and not once, not

twice but three times since being home his PIC line dressings had to be changed

with our last option. He blistered and had a rash so it had to be changed AND

his knee is warm tonight with the wounds showing redness that wasn't there

before...keep all positive vibes and prayers flowing for him. PLEASE...

Donna

[Guest guest]

We are currently seeing the ortho, the ID and his pediatrician. If things dont

really start to move uphill by Tuesday I believe the docs will be seeking other

remedies yet again.....

I still am dealing with the emotional side of all of this and I want to take

just a second to say I admire all of you mommas who do this all the time. Better

yet those of you who work...how in the heck do you do it? We have a daily

schedules that?are nuts. I do the?7,3,and 11 infusions. Nurse, PT, and homebound

school, throw in a docs appointment here and there, fixing food when

decides he wants to try a bite?and I dont know if I am coming or going. Today?I

only have to take homework to school and see one nurse (so far) so I am hoping

for a lil tiny bit of rest before my stepdaughters get into town at 6...

All I can say is God Bless you mommas. You are awesome!

hugs

Donna

[Guest guest]

-Donna,

I hope you got the rest you were seeking and that everything will get better

soon. Hang in there and best wishes to you and !

& 16

-- In , ajaoky@... wrote:

>

>

> We are currently seeing the ortho, the ID and his pediatrician. If things dont

really start to move uphill by Tuesday I believe the docs will be seeking other

remedies yet again.....

>

> I still am dealing with the emotional side of all of this and I want to take

just a second to say I admire all of you mommas who do this all the time. Better

yet those of you who work...how in the heck do you do it? We have a daily

schedules that?are nuts. I do the?7,3,and 11 infusions. Nurse, PT, and homebound

school, throw in a docs appointment here and there, fixing food when

decides he wants to try a bite?and I dont know if I am coming or going. Today?I

only have to take homework to school and see one nurse (so far) so I am hoping

for a lil tiny bit of rest before my stepdaughters get into town at 6...

>

> All I can say is God Bless you mommas. You are awesome!

>

> hugs

>

> Donna

>

>

>

[Guest guest]

Donna,

sorry that you are having to go through this with . It is not easy I am

sure. You will do fine and will come out of this experience with the ability to

share your experience and the knowledge you gain with other parents.? Just one

day at a time is all you can do, and sometimes it is just one moment at a time

is all that you can handle.? We are praying for you and and the doctors

to get things right. I pray for a complete recovery soon. Also I hope you are

taking care of your self. You can not neglect your self and still be able to

take care of your family.? Keep us posted.

Veri & Jaye

Re: update

We are currently seeing the ortho, the ID and his pediatrician. If things dont

really start to move uphill by Tuesday I believe the docs will be seeking other

remedies yet again.....

I still am dealing with the emotional side of all of this and I want to take

just a second to say I admire all of you mommas who do this all the time. Better

yet those of you who work...how in the heck do you do it? We have a daily

schedules that?are nuts. I do the?7,3,and 11 infusions. Nurse, PT, and homebound

school, throw in a docs appointment here and there, fixing food when

decides he wants to try a bite?and I dont know if I am coming or going. Today?I

only have to take homework to school and see one nurse (so far) so I am hoping

for a lil tiny bit of rest before my stepdaughters get into town at 6...

All I can say is God Bless you mommas. You are awesome!

hugs

Donna

[Guest guest]

Glad to hear you have ID along. I pray that something happens quickly to turn

this all around. Keep hanging tight and hanging tough and tell to do the

same. Sad that he went in for something that should have been so minor and

turned out so major. Keep us updated when you can.

e, mom to 'joe' 22 poly+

From: ajaoky@... <ajaoky@...>

Subject: Re: update

Date: Friday, September 11, 2009, 5:29 AM

 

We are currently seeing the ortho, the ID and his pediatrician. If things dont

really start to move uphill by Tuesday I believe the docs will be seeking other

remedies yet again.....

I still am dealing with the emotional side of all of this and I want to take

just a second to say I admire all of you mommas who do this all the time. Better

yet those of you who work...how in the heck do you do it? We have a daily

schedules that?are nuts. I do the?7,3,and 11 infusions. Nurse, PT, and homebound

school, throw in a docs appointment here and there, fixing food when

decides he wants to try a bite?and I dont know if I am coming or going. Today?I

only have to take homework to school and see one nurse (so far) so I am hoping

for a lil tiny bit of rest before my stepdaughters get into town at 6...

All I can say is God Bless you mommas. You are awesome!

hugs

Donna

[Guest guest]

Donna,

sorry that things are not all better and all clear but sure am glad to hear that

he is feeling better. I pray that the new doctors will get to the bottom of

these issues quickly and that soon he will be on full mend.

Veri & Jaye 15 poly

update

geez, well today took us to s pediatrician for follow up on all his

issues. The doc was quite surprised to see the shape was in. He weighed

132 and on his last visit prior to surgery he weighed 158 (which isn't much on a

6'2 " frame). His cheeks are sunk in, eyes are dark and he is very pale so he

looks sick but he does look better than two weeks ago....... has become

very fatigued, sleepless, hasnt regained much appetite, is very anemic and the

doc was so concerned. When he seen some post op notes he decided to order

further test including screening for diabetes, which runs in the family but it

was negative. Yippeee! Due to tissue in the knee being so friable he is

concerned about immune issues as well well as vascular and arterial issues so he

has decided we need to be seeing pediatric specialist (infectious disease)

rather than adult care and maybe an immunologist as well. I am not sure what

they are looking for and not sure I want to know. I really think this infection

simply took a toll on his body but this much weight loss in this amount of time

has become a huge concern but didnt eat for days! We have also learned

he does have adhesive sensitivity but that has not been the only culprit in

keeping his PIC line area a mess. The nurse figured out it was the cleaning

solution and today they will change to a soap/ water and betadine cleaning and

begin using steroidal cream to get the rash to clear up because now we fear it

will become infected. ugh!

On a brighter note, had an incredible day. He ate, he had company and

played video games and best of all he went to school, picked up his ROTC uniform

and learned he will still get to participate with the ROTC in a parade tomorrow!

He will get to ride in a military ambulance. ...

Hangin tight!

Donna

[Guest guest]

On Sep 20, 2009, at 8:26 AM, Nucleus24 wrote:

> Thanks to all for your kind thoughts and wishes. Trying to stay up

> more

> each day. Eating more. Still have that funny metallic taste in my

> mouth. UGH.

>

> Nimue, my pooch, seems to recognize me again, although all the

> neighbors

> are busy spoiling her. No problem, she deserves it.

>

> First mapping is supposed to be 2 weeks post surgery, but nobody at

> the

> Cleveland Clinic is trained to do the mapping yet, and they don't have

> the software. Also don't have the processors. So might be a delay

> there. I've written to my friend at Cochlear, who is in charge of

> software and training, telling him he should come to town, map me and

> teach the Clinic people at the same time. I was the 3rd Nucleus 5

> my Dr.

> did, so there will be at least 3 of us waiting for mappings.

>

> I've had dizziness problems for years, so this doesn't surprise me.

> Just

> taking it easy, eating when I can. Little or no pain from the surgery

> itself. Incision was right behind and around the ear, so no hair

> cutting

> (compared to half a head shaved the last time). I wrote on my surgical

> gown - which was PURPLE BTW " Do a good job " . When the Dr. came in

> to ask

> what we were doing (this is standard, to make sure you're aware of

> what

> is going on), I told him he was going to do a good job, even though

> he's

> blond, I'm blonde, and his ENT resident is blonde. We would all muddle

> through. And then added, a right side Nucleus 5 cochlear implant.

>

> Beds in the OR and ths hospital automatically adjust to whatever

> position

> you are in, so you don't get bedsores. Interesting.

>

> Thanks to everyone for the nice wishes.

>

> __________________________________________________________

> Best Weight Loss Program - Click Here!

> http://thirdpartyoffers.juno.com/TGL2141/fc/

> BLSrjpTFoYdwGnLvUIWN3XZY30zBPbWaAQcwNVLaOpSC1MqUtLy30yLUcRi/

>

[Guest guest]

Dear ,

   I am so very sorry to hear you are going through all of this.I know your

faith and the love of  , your family and your friends get you through the

roughest of times.Our love and prayers are always with you and I pray things get

better for you.

   I also pray Rob has a recruiting officer on the up and up and army Dr's on

the up and up.I have seen so many stories on TV that just let young recruits in

no matter what their condition was.Unfortunately it was because of a tragedy

that it hit the news.I fear I am going to face this same problem with young Dave

in about 7-8 years.The military is also his dream and knows of almost every

single weapen they use now and in the past,thanks to Call of Duty 3,4,5 and the

Military channel.

   Sending LOTS of happy thoughts to Indiana.

            Love and miss you guys,

              Becki and the Beast 11 SoJRA

________________________________

From: and Schulz <snooksmama@...>

Sent: Tuesday, October 13, 2009 9:30:09 PM

Subject: update

 

Well, my crazy son signed his papers tonight for the Army. I doubt so seriously

he will get in...hips are bad and he has the scars on his chest from the pectus

excavatum repair...but he wants this so badly. The thing is, he signed up for

this and will go for medical workup right in the middle of his semester! I am

trying to be supportive but it seems like such a waste of his time, and

jeopardizing his semester when he is not likely to get in. Wish I could slap his

recruiter... to her he is just a number I am sure...

to top it all off I had surgery on 8/7 for bowel adhesions that were causing 2

partial blockages. Two months to the day, I had a sudden recurrence of symptoms.

Now it is believed that although the outside of the bowel has been freed up, the

lumen or inner area of the bowel is narrowed. The 'fix' is more surgery to take

out that section of bowel...but that will also set me up for more adhesions. I

get another opinion on Thursday and may fly to Atlanta to see the surgeon that

straightened this out 11 years ago...at least his fix lasted 11 years not just 2

months!!

And to top it all off, I believe that I may have gout in my left foot! I see the

rheumy's NP in the AM. Infusion (Orencia) is due on Friday...

, adult onset RA and Rob 20 JAS

Humira- First time

> @group s.com

> Date: Wednesday, October 14, 2009, 1:44 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Two weeks ago my doctor prescribe Humira. I had to wait on my insurance to

approve it and they finally did at 100%, yes I have a zero co-pay!! I received

the Humira in the mail today and I have an appointment with my doctor's nurse

practitioner on Thursday to learn how to use it and make sure I tolerate the

first shot well. Please keep me in your prayers that I tolerate the medicine

well and that this is what I have been waiting for. I am praying that this is

the thing that puts me into remission.

>

>

>

> I had a strange thought today. When I was first diagnosed and

> all through growing up with this disease it was my mom who held

> my hand through it all. When I was in my late teens I had that

> whole " I'm an adult now " moment and it was my best friend who

> held my hand through it all but I of course always had my mom to

> turn to if it ever got really complicated. I met my fiance three

> months after my mom passed away and I truly believe my mom led

> me to him because now he is the one who holds my hand through it

> all. On Thursday he is taking off work to come with me to hold

> my hand through the first shot and even said that if I wanted he

> would give me my shots (which uh..nice and all..but I think I

> will do that myself). I feel blessed to have such an amazing

> wonderful guy in my life and I feel so lucky to be marrying. I

> may hate that this has had to be apart of relationship but I

> also know the person I am marrying better because of it.

>

>

>

> Love always,

>

> (MCTD, 24)

>

>

>

>

[Guest guest]

:

I'm so sorry you are going through so much right now.  I will pray that the

recruiter does what's in the best interest of Rob and not treat him like just a

number.  My nephew will graduate from basic training in December.  He is then

assigned to a base in LA, which he will report to in January.  I'm SO thankful

they do not deploy from this base, so I know he'll be safe...at least for now.

As for you I cannot believe you have had a recurrence after 2 short months. 

I'm glad too you are getting a second opinion and hope the next fix will last a

lot longer.  Good luck on the gout, that is not fun at all either.  Lots and

lots of hugs for you.  Love ya

 

Beth

" We can't direct the wind, but we can adjust our sails " -author unknown

________________________________

From: and Schulz <snooksmama@...>

Sent: Tuesday, October 13, 2009 9:30:09 PM

Subject: update

 

Well, my crazy son signed his papers tonight for the Army. I doubt so seriously

he will get in...hips are bad and he has the scars on his chest from the pectus

excavatum repair...but he wants this so badly. The thing is, he signed up for

this and will go for medical workup right in the middle of his semester! I am

trying to be supportive but it seems like such a waste of his time, and

jeopardizing his semester when he is not likely to get in. Wish I could slap his

recruiter... to her he is just a number I am sure...

to top it all off I had surgery on 8/7 for bowel adhesions that were causing 2

partial blockages. Two months to the day, I had a sudden recurrence of symptoms.

Now it is believed that although the outside of the bowel has been freed up, the

lumen or inner area of the bowel is narrowed. The 'fix' is more surgery to take

out that section of bowel...but that will also set me up for more adhesions. I

get another opinion on Thursday and may fly to Atlanta to see the surgeon that

straightened this out 11 years ago...at least his fix lasted 11 years not just 2

months!!

And to top it all off, I believe that I may have gout in my left foot! I see the

rheumy's NP in the AM. Infusion (Orencia) is due on Friday...

, adult onset RA and Rob 20 JAS

Humira- First time

> @group s.com

> Date: Wednesday, October 14, 2009, 1:44 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Two weeks ago my doctor prescribe Humira. I had to wait on my insurance to

approve it and they finally did at 100%, yes I have a zero co-pay!! I received

the Humira in the mail today and I have an appointment with my doctor's nurse

practitioner on Thursday to learn how to use it and make sure I tolerate the

first shot well. Please keep me in your prayers that I tolerate the medicine

well and that this is what I have been waiting for. I am praying that this is

the thing that puts me into remission.

>

>

>

> I had a strange thought today. When I was first diagnosed and

> all through growing up with this disease it was my mom who held

> my hand through it all. When I was in my late teens I had that

> whole " I'm an adult now " moment and it was my best friend who

> held my hand through it all but I of course always had my mom to

> turn to if it ever got really complicated. I met my fiance three

> months after my mom passed away and I truly believe my mom led

> me to him because now he is the one who holds my hand through it

> all. On Thursday he is taking off work to come with me to hold

> my hand through the first shot and even said that if I wanted he

> would give me my shots (which uh..nice and all..but I think I

> will do that myself). I feel blessed to have such an amazing

> wonderful guy in my life and I feel so lucky to be marrying. I

> may hate that this has had to be apart of relationship but I

> also know the person I am marrying better because of it.

>

>

>

> Love always,

>

> (MCTD, 24)

>

>

>

>

[Guest guest]

Well, it is not gout but it is a severe case of plantar fascitis. I guess I

should have had it looked at sooner, but the dosepak did help some so I thought

it might get better. I have to see an orthopedist for injection, and bought gel

heel cups today, and going to start on some stretches tonight. Bad thing is I

have a mini-vacation planned for 10/27 and can't see the orthopod until

11/5...hurry up and wait. Go to the GI doc tomorrow...

Thanks for all the hugs! And the good thoughts about Rob, I still am not worried

I do not see how in the world he will pass MEPS.

and Rob 20 JAS

Humira- First time

> > @group s.com

> > Date: Wednesday, October 14, 2009, 1:44 AM

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Two weeks ago my doctor prescribe Humira. I had to wait on my

> insurance to approve it and they finally did at 100%, yes I have

> a zero co-pay!! I received the Humira in the mail today and I

> have an appointment with my doctor's nurse practitioner on

> Thursday to learn how to use it and make sure I tolerate the

> first shot well. Please keep me in your prayers that I tolerate

> the medicine well and that this is what I have been waiting for.

> I am praying that this is the thing that puts me into remission.

> >

> >

> >

> > I had a strange thought today. When I was first diagnosed and

> > all through growing up with this disease it was my mom who

> held

> > my hand through it all. When I was in my late teens I had that

> > whole " I'm an adult now " moment and it was my best friend who

> > held my hand through it all but I of course always had my mom

> to

> > turn to if it ever got really complicated. I met my fiance

> three

> > months after my mom passed away and I truly believe my mom led

> > me to him because now he is the one who holds my hand through

> it

> > all. On Thursday he is taking off work to come with me to hold

> > my hand through the first shot and even said that if I wanted

> he

> > would give me my shots (which uh..nice and all..but I think I

> > will do that myself). I feel blessed to have such an amazing

> > wonderful guy in my life and I feel so lucky to be marrying. I

> > may hate that this has had to be apart of relationship but I

> > also know the person I am marrying better because of it.

> >

> >

> >

> > Love always,

> >

> > (MCTD, 24)

> >

> >

> >

> >

[Guest guest]

Glad to hear it is not gout. Hope you are feeling better sooner, rather than

later. What a pain to have to wait for the injection!

I think you've got a good attitude about Rob and the army. Put it in God's hands

and what will be, will be. You are probably right about the medical issue, once

they find out all he has going on, they may not take him, like what happened to

Chris. Hugs, Michele ( 22, spondy)

________________________________

From: [mailto: ] On Behalf Of

and Schulz

Sent: Wednesday, October 14, 2009 3:13 PM

Subject: Re: update

Well, it is not gout but it is a severe case of plantar fascitis. I guess I

should have had it looked at sooner, but the dosepak did help some so I thought

it might get better. I have to see an orthopedist for injection, and bought gel

heel cups today, and going to start on some stretches tonight. Bad thing is I

have a mini-vacation planned for 10/27 and can't see the orthopod until

11/5...hurry up and wait. Go to the GI doc tomorrow...

Thanks for all the hugs! And the good thoughts about Rob, I still am not worried

I do not see how in the world he will pass MEPS.

and Rob 20 JAS

Humira- First time

> > @group s.com

> > Date: Wednesday, October 14, 2009, 1:44 AM

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Two weeks ago my doctor prescribe Humira. I had to wait on my

> insurance to approve it and they finally did at 100%, yes I have

> a zero co-pay!! I received the Humira in the mail today and I

> have an appointment with my doctor's nurse practitioner on

> Thursday to learn how to use it and make sure I tolerate the

> first shot well. Please keep me in your prayers that I tolerate

> the medicine well and that this is what I have been waiting for.

> I am praying that this is the thing that puts me into remission.

> >

> >

> >

> > I had a strange thought today. When I was first diagnosed and

> > all through growing up with this disease it was my mom who

> held

> > my hand through it all. When I was in my late teens I had that

> > whole " I'm an adult now " moment and it was my best friend who

> > held my hand through it all but I of course always had my mom

> to

> > turn to if it ever got really complicated. I met my fiance

> three

> > months after my mom passed away and I truly believe my mom led

> > me to him because now he is the one who holds my hand through

> it

> > all. On Thursday he is taking off work to come with me to hold

> > my hand through the first shot and even said that if I wanted

> he

> > would give me my shots (which uh..nice and all..but I think I

> > will do that myself). I feel blessed to have such an amazing

> > wonderful guy in my life and I feel so lucky to be marrying. I

> > may hate that this has had to be apart of relationship but I

> > also know the person I am marrying better because of it.

> >

> >

> >

> > Love always,

> >

> > (MCTD, 24)

> >

> >

> >

> >

[Guest guest]

,

Sounds like you are dealing with a recruiter that only looks at the numbers. We

had one hounding my son after they found out he was interested. This recruiter

actually told us to make sure we did not list things like his ADHD or the fact

that he had ever been on ritalin or straterra as those med's would immediatly

make him inelegible. He was told not to lie but just make sure that he did not

mention it. I had a recruiter come into my home and tell us this. I was so very

angry at that man let me tell you. Now I am not against the military. My brother

is the Army Kennel Master and so I have the utmost respect for most of the

military but I certainly am not impressed by many of the recruiters. If I could

have found the person to report that recruiter to I would have done it but I did

not know who to talk to at that point. As for the getting to choose where he

goes and when he goes, tell him those days are gone. Even getting sent to a

base that does not deploy is not safe. My ex brother-in-law signed up for the

reserves shortly after Sept 11 happened to a base that had never deployed in

history. Ha, they were deployed. So I would not think there is any safe place

in the military where you are guaranteed to not deploy. Besides once you get to

a base they can transfer you to another one if they determine they want to move

you.

As for you I hope you get to feeling better soon. Glad to hear you do not have

gout. I hope you enjoy your mini vacation. I will keep you all in my prayers.

Veri & Jaye

update

Well, my crazy son signed his papers tonight for the Army. I doubt so seriously

he will get in...hips are bad and he has the scars on his chest from the pectus

excavatum repair...but he wants this so badly. The thing is, he signed up for

this and will go for medical workup right in the middle of his semester! I am

trying to be supportive but it seems like such a waste of his time, and

jeopardizing his semester when he is not likely to get in. Wish I could slap his

recruiter...to her he is just a number I am sure...

to top it all off I had surgery on 8/7 for bowel adhesions that were causing 2

partial blockages. Two months to the day, I had a sudden recurrence of symptoms.

Now it is believed that although the outside of the bowel has been freed up, the

lumen or inner area of the bowel is narrowed. The 'fix' is more surgery to take

out that section of bowel...but that will also set me up for more adhesions. I

get another opinion on Thursday and may fly to Atlanta to see the surgeon that

straightened this out 11 years ago...at least his fix lasted 11 years not just 2

months!!

And to top it all off, I believe that I may have gout in my left foot! I see the

rheumy's NP in the AM. Infusion (Orencia) is due on Friday...

, adult onset RA and Rob 20 JAS

Humira- First time

>

> Date: Wednesday, October 14, 2009, 1:44 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Two weeks ago my doctor prescribe Humira. I had to wait on my insurance to

approve it and they finally did at 100%, yes I have a zero co-pay!! I received

the Humira in the mail today and I have an appointment with my doctor's nurse

practitioner on Thursday to learn how to use it and make sure I tolerate the

first shot well. Please keep me in your prayers that I tolerate the medicine

well and that this is what I have been waiting for. I am praying that this is

the thing that puts me into remission.

>

>

>

> I had a strange thought today. When I was first diagnosed and

> all through growing up with this disease it was my mom who held

> my hand through it all. When I was in my late teens I had that

> whole " I'm an adult now " moment and it was my best friend who

> held my hand through it all but I of course always had my mom to

> turn to if it ever got really complicated. I met my fiance three

> months after my mom passed away and I truly believe my mom led

> me to him because now he is the one who holds my hand through it

> all. On Thursday he is taking off work to come with me to hold

> my hand through the first shot and even said that if I wanted he

> would give me my shots (which uh..nice and all..but I think I

> will do that myself). I feel blessed to have such an amazing

> wonderful guy in my life and I feel so lucky to be marrying. I

> may hate that this has had to be apart of relationship but I

> also know the person I am marrying better because of it.

>

>

>

> Love always,

>

> (MCTD, 24)

>

>

>

>

[Guest guest]

Sorry to hear about this possibility. I hope the knee issue did not trigger

anything for . You are right, you must get it checked out. I felt the

same when my oldest started to have knee problems. I was so worried she had

arthritis like but it turned out to be something else that is common in

girl athletes. But even now, when the girls complain of joint pain I think

arthritis and make sure to monitor the symptoms. Can't help it I guess.

I'll think positive thoughts and keep you all in my prayers, Michele ( 22,

spondy)

________________________________

From: [mailto: ] On Behalf Of

ajaoky@...

Sent: Friday, October 16, 2009 9:37 AM

Subject: update

Hey all, its been a bit so wanted to update all on . He is finally back

to school and I would love to say all is great but its only a bit better so we

are running with that. is dealing with alot of fatigue right now, very

unlike him to be tired and we have another issue that has brewed up and caused

much concern. The knee is doing much better but still has swelling issues. His

labs , infection wise, are in the normal range. Yipppeee! However his SED rate

is remaining high and that combined with his new problem has raised an eyebrow.

Now his ankle has joined the party and has decided to swell and hurt so much he

can barely walk. Ortho and ID are concerned, esp with my history and he is now

being forwarded to a ped rheumy.

Although this thought of possible JIA saddens me I know it could always be much

worse and with my background and knowledge we all know I will seek proper

attention and in proper time. keep him in your thoughts please...hugs to all!

Donna

[Guest guest]

Donna:

Sorry to hear about Bran, remember sed rate is NOT specific for arthritis, just

shows inflammation and can indicate infection either recent or present...

hope that the ankle issue is not related but as you said, if it is you know how

to deal and what better person to advise him than you...

Take care and hopefully see you Saturday

update

>

>

>

> Hey all, its been a bit so wanted to update all on . He

> is finally back to school and I would love to say all is great

> but its only a bit better so we are running with that.

> is dealing with alot of fatigue right now, very unlike him to be

> tired and we have another issue that has brewed up and caused

> much concern. The knee is doing much better but still has

> swelling issues. His labs , infection wise, are in the normal

> range. Yipppeee! However his SED rate is remaining high and that

> combined with his new problem has raised an eyebrow. Now his

> ankle has joined the party and has decided to swell and hurt so

> much he can barely walk. Ortho and ID are concerned, esp with my

> history and he is now being forwarded to a ped rheumy.

>

> Although this thought of possible JIA saddens me I know it could

> always be much worse and with my background and knowledge we all

> know I will seek proper attention and in proper time. keep him

> in your thoughts please...hugs to all!

>

> Donna

>

>

[Guest guest]

Hi and thanks for the update. I miss callin me and hope she gets

all the relief she needs very soon. I am so, so glad you guys are with Dr. Hong

and like her so much. I hope you had a joyous holiday and are looking forward to

a great Christmas. I, too, hope we can pull something together for

Spring.....give Ash a hug ....

Donna

[Guest guest]

Hey ,

I am sorry to hear how rough things are going with . Unfortunately at this

age it seems things get a little harder between the JRA flares and the whole

changing hormones thing. I hope that Dr. Hong can find the perfect treatment for

her so she can enjoy these years a little more. How lucky though for her

that she has a special friend like Maggie and of course how lucky for Maggie

that she has a special friend like . I am praying for and hoping

things start looking up. Of course Maggie, Diane, and Ally are always in my

prayers as well. If you ever find yourself in Northern California I hope that

you'll come visit me!

With Love,

(MCTD, 24..but I am soon to be 25!! Hard to believe I was 16 when I joined

this message board)

From: <amandaharris125@...>

Subject: update

Date: Monday, November 30, 2009, 10:15 PM

 

It has been 2 months since 's first appointment with Dr Hong. She

started her on 2 meds when we where there but she had to quit taking the one due

to bleeding problems. This was frustrating because it was really helping. She is

having some problems with chest pain due to the inflation. She has been keeping

me busy with PT 2 times a week and all her other appointment. We are still

looking for a massage therapist that our insurance will take.

We will be leaving next Tuesday morning for Iowa for her appointment with Dr

Hong next Wednesday. It is about a 10 hour drive but worth it. We love Dr Hong.

We will also get to spend a couple of days visiting Maggie and Diane. I know

that many here follow Maggie's care page and she is truly an amazing young

lady.We had been following Maggie's care page for a long time but right before

she had her seizures and the beschets(sp) attack that caused the damage we were

able to meet her. and I were so happy we got to meet Maggie at that time.

I talked to her a few days ago and she is also looking forward to the visit.

Last time we went to the book fair,gift shop and to get some supper with her at

the hospital. Please keep her whole family in your thoughts. Ally (Maggie's 15

year old sister) has lupus. We will try to post pictures from our visit.Anyone

that is 's friend on face book can see pictures f0r other visits.

is now doing homebounding thought the school. This has not been an easy

process. Everything that the woman in charge of her IEP has put in writing the

school does not seen to want to follow. Today they gave us the paper work to

sign but we are not going to because according the the paper work she is to have

a teacher in for at least 2 hours a week and they have only been coming 1 hour.

We were hoping to see our Louisville gang before winter but it didn't work out

so we will hopefully see them them this spring. They have became like family. We

love to meet new jra people. I know Beth and Hannah are on the top of out list

this spring when we got to Iowa because they are only 4 hours from Maggie.But we

would be thrilled to meet anyone in the group.

Thank you for all you support. There are a couple of people on here that I don't

know what do without. Even the one certain person that has made her think she is

a princess. (MARIA)

Each and everyone one of you are in my thought daily.

[Guest guest]

Hey Penny,

Way to go girl. I bet you look amazing. Have a very Merry Christmas and enjoy your family. Tell you husband I said Hi!. And please post some pictures, I can't wait to see them.

Hugs,

Suzanne

In a message dated 12/17/2009 12:14:11 P.M. Pacific Standard Time, prstorey@... writes:

Linn and Granger you look GREAT!!! I’m down 86.5 lbs. I need to get some pictures posted. I will soon.

Penny

From: [mailto: ] On Behalf Of linnboydSent: Thursday, December 17, 2009 12:45 PM Subject: Update

I just posted some pictures of Granger and I from Christmas of last year to Christmas of this year.This surgery was life changing for us. Granger has lost 77lb's and I have lost 107lb's. We had the sleeve done by Dr Aceves one hour apart on April 28th 2009. It was the best thing that we have done in a long time.-Linn

No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 8.5.427 / Virus Database: 270.14.111/2570 - Release Date: 12/17/09 08:30:00

[Guest guest]

Linn and Granger you look GREAT!!! I’m down 86.5 lbs. I need

to get some pictures posted. I will soon.

Penny

From:

[mailto: ] On Behalf Of linnboyd

Sent: Thursday, December 17, 2009 12:45 PM

Subject: Update

I just posted some pictures of Granger and I

from Christmas of last year to Christmas of this year.

This surgery was life changing for us. Granger has lost 77lb's and I have lost

107lb's. We had the sleeve done by Dr Aceves one hour apart on April 28th 2009.

It was the best thing that we have done in a long time.

-Linn

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.427 / Virus Database: 270.14.111/2570 - Release Date: 12/17/09

08:30:00