Georgina & Josh

[Guest guest]

Georgina, I was just reading your post to e when I noticed that Josh is having wrist problems and is wondering if the injections will help even though he has so far opted not to do so. I too have had many wrist problems. my right wrist is now fused, arthritic fusion not surgical type and it is true there is no more pain there, but there is the limitation of the joint. I personally don't miss it, the movement I mean and of course the pain LOL I have limited movement in the left wrist but it still can be painful. I know it's hard to accept the end of movement that is suppose to be there but even with joint injects as I had there is a possibility that the joint will fuse on its own anyway. Truthfully the fusion happens so gradually that you simply one day notice that it has happened and life goes on ...I still could paint and draw and put my clothes on and comb my hair and do all the same things. My only problem with it is when constructed things like car door handles and such are made in some cars to assume that you can flex the wrist backwards to access it.... this is simply solved by reaching over with the opposite hand and grabbing that handle. I very much understand the both of you striving to stay off the steriods, I believe that is a life long ongoing goal but I think when the simplest task get too painful that joint inject is sure easier to take than starting oral and then doing the ween again. Of Course, there is pain involved in the inject...i would never tell you there wasn't because it can be bad but I've had some that were so mild pain wise I hardly knew it happened. Truthfully I think its all in the skill of the doc too, if they do that particular joint alot well then your sure to have less painful inject, something about hitting the sweet spot. LOLOL my regualr orthopedist that did my hip replacements sent me to adifferent ortho that was particularly good with the ankles and had him to inject me ..it took one inject from the new ortho to solve the problem that had pained me for about two years. The new Ortho hit the sweet spot and it worked like a dream. I hope you all have a merry christmas and a great new year too! I going to try to but Matt had a mishap at the wrestling tournament Saturday and I spent most of the today in the Ortho's office with him LOLOL always something LOLOL we are off to the MRI tomorrow they think he has maybe torn his rotator cuff or something else in the shoulder. Kids, what would we do with out them :):) I knew better than to put my gift wrapping off until the last few days before xmas LOLOLOL that'll teach me LOLOLOL Much Love to you all and just let me know when you guys want to drop in on us here in Kentucky LOL late april and early May is a great time to come because of all the Derby festival activities. Hugs :)Tree:):):) Re: a fall down the stairs / increasing Prednisone again Hi e,Words can't really express the feelings I'd like to share with you now,not nearly as well as a gentle hug could. I am so sorry for the sense ofloss you must feel, with the recent passing away of your Grandmother. Iam so sorry, too, to hear that Joe's situation still hasn't improved. has had his leg 'give-way' twice and both times it was so sad forme to see. Fortunately, he was not on stairs when it happened. Helpinghim up, I had tears in my eyes. Josh made light of it; still smiling,still trying to be strong; trying to find some humor in a bad situation,so we wouldn't feel sad for him.You know I was upset to read about the increased prednisone dose! Howincredibly frustrating. It's always at the back of mind, that eventhough things are relatively stable right now it could happen again to ... at any moment. Then I look at it from the other side. If hewere to increase his prednisone dose right now, the severe pain he'sbeen having in his wrists everyday might be gone tomorrow. Or the nextday. And then I worry that we're not doing the right thing, by notincreasing it, although in some ways we're doing exactly the rightthing. Our goal all along has been to decrease or discontinue it. So,we're successful. Yea! :)But he has daily pain. Boo! :(But it's mostly only in his wrists. So ... is that a good thing or a badthing?We had a talk the other day about wrist fusion. How when the bones dofinally fuse that there's no more pain in the joints. He hates the painbut yet he doesn't want to be left with a non-functioning wrist, either. Even if it meant no more pain, he wants to be able to bend his wristsand doesn't want to have to learn to live, permanently, with thestiffness and rigidity. Dr. Ono, the ortho he saw Oct 1st, talked withhim about joint injections. Gave him some time to think about it morewhile at the same time trying an increased dose of NSAID to see if thathelped at all (it hasn't). The other night we saw Dr. Ono on the news,talking about his imminent departure to Iraq. Now Josh feels like hemissed an opportunity. He was scared about having a joint injection donebut now feels like it might be worth it, if it worked well. Despite hisfears of the procedure.Okay. Enough about all that. I really just wanted you to know that youand your daughter are in our thoughts and we can understand the pressureand frustration you're probably feeling about everything right now. I'mso sorry that you've got so much going on right now and I hope thatthings will get better soon.Aloha,Georginaboundforlondon wrote:> Okay, be prepared this is going to be a long one.LOL>> I spent last week out of state because my grandma had a massive> heart attack. While I was there she passed away and we had her> funeral. I forgot to ask someone to give my daughter her injections> but was able to find a friend to come over and do it for her when> she had both the MTX and Enbrel. But the big news is that she gave> herself an injection of Enbrel. That was incedible for a girl so> fearful of needles.>> When I flew in on Sunday she said she had been hurting. She was> having a hard time walking at the airport. She has complained all> week of joint pain, more than normal. Her knees are still stubborn> and likely always will be. But this week it is complaints of ankle,> hip, severe knee, wrist, and other complaints. No fever, no signs of> infection but something definetly was up. Called the dr on Tuesday,> nurse said he would call. No call back until I placed another call> Thursday (sometimes they dont' seem to communicate too well)...He> had a few ideas---labs to see what is happening, perhaps an> underlying infection, possible pred burst, possible switch to> Remicade (been debating that one off and on for about a year or> more), and possible clinic visit. She about fell during the> orchestra concert because her hip gave out on her but was able to> catch herself on something.>> So that brings us to today. I called the local lab to see if they> had a requisition this morning but they said no. I called the nurse> to remind them and give them the fax number in case they don't have> it. Called late in the afternoon and they still had not got the> requisition. So then it was time to go to the church Christmas> party. She fell down the stairs because her leg gave out. She is not> sure if it was the hip or knee. So, it was back on the phone. This> time I paged the rheumy. Thankfully he is good about calling right> back when I page. He is worried that she may have torn her ACL or> other ligament because she has worn down so much of her knee> already. At this point I dont' think so but I guess time will tell.> If she has severe pain, redness or swelling then it is off for a CT> or MRI. So now he wants to give her a pred burst. She finally got> down to 3.5 after a 2 year taper and now it is up to 20 daily. He> faxed the lab himself while I was talking to him so we go for labs> first. She is taking Ultam and Tylenol frequently. he tried to work> her into clinic but with Christmas coming there are absolutely no> openings. Oh and she is headed back to PT. Maybe we can strenghten> her muscles to give her joints more stability>> So at the moment we are watching a movie while she relaxes and ices> her knee, which took the brunt of the fall. Unfortunately our house> is a split level and her bedroom is downstairs so she has to go up> and down stairs. I wish we could sell this house and buy a 1 story.> Right now we just don't have the resources to do so.>> Thanks for listening. I needed a safe place to vent. I feel so> overwhelmed after dealing with my grandma's hospitalization and> death, helping my dad plan her funeral, sorting out her house,> getting my dad's disabled brother who was cared for by his mom> placed into a care facility and now her health problems Then she> fell. I can only hope and pray there is no serious damage on top of> her other problems. Oh and then I missed my son's birthday so we are> having his birthday tomorrow. Oh and of course Christmas is just> around the corner. I feel so unprepared for it. Sorry to sound so> dreary, like I said I'm just overwhelmed.>> May this new year bring us all what we are seeking--a relief from> the pain, and sorrow of JRA. May a cure be found soon to provide all> with a permanent remission.>> e, mom to joe (who turns 17 in 10 days; yes, she is counting> the days)

[Guest guest]

Hi Tree,

Thanks for your message. I shared it with Josh and I think it was good

for him to hear it from somebody like you. He really holds you in high

esteem, since having the chance to meet you at the Minnesota AJAO

Conference. I think when we see the doctor at the end of January that

he'll be more vocal about it and more likely to push for SOMETHING to be

done. Unless, of course, using that paraffin wax dip daily has some

magical powers that help to heal his wrists without the need for a joint

injection or change in meds.

Thanks, Georgina

Tree Sap wrote:

> Georgina,

>

> I was just reading your post to e when I noticed that Josh

> is having wrist problems and is wondering if the injections will help

> even though he has so far opted not to do so. I too have had many wrist

> problems. my right wrist is now fused, arthritic fusion not surgical

> type and it is true there is no more pain there, but there is the

> limitation of the joint. I personally don't miss it, the movement I mean

> and of course the pain LOL I have limited movement in the left wrist but

> it still can be painful. I know it's hard to accept the end of movement

> that is suppose to be there but even with joint injects as I had there

> is a possibility that the joint will fuse on its own anyway. Truthfully

> the fusion happens so gradually that you simply one day notice that it

> has happened and life goes on ...I still could paint and draw and put my

> clothes on and comb my hair and do all the same things. My only problem

> with it is when constructed things like car door handles and such are

> made in some cars to assume that you can flex the wrist backwards to

> access it.... this is simply solved by reaching over with the opposite

> hand and grabbing that handle.

> I very much understand the both of you striving to stay off

> the steriods, I believe that is a life long ongoing goal but I think

> when the simplest task get too painful that joint inject is sure easier

> to take than starting oral and then doing the ween again. Of Course,

> there is pain involved in the inject...i would never tell you there

> wasn't because it can be bad but I've had some that were so mild pain

> wise I hardly knew it happened. Truthfully I think its all in the skill

> of the doc too, if they do that particular joint alot well then your

> sure to have less painful inject, something about hitting the sweet

> spot. LOLOL my regualr orthopedist that did my hip replacements sent me

> to adifferent ortho that was particularly good with the ankles and had

> him to inject me ..it took one inject from the new ortho to solve the

> problem that had pained me for about two years. The new Ortho hit the

> sweet spot and it worked like a dream.

> I hope you all have a merry christmas and a great new year too! I

> going to try to but Matt had a mishap at the wrestling tournament

> Saturday and I spent most of the today in the Ortho's office with him

> LOLOL always something LOLOL we are off to the MRI tomorrow they think

> he has maybe torn his rotator cuff or something else in the shoulder.

> Kids, what would we do with out them :):) I knew better than to put

> my gift wrapping off until the last few days before xmas LOLOLOL that'll

> teach me LOLOLOL Much Love to you all and just let me know when you guys

> want to drop in on us here in Kentucky LOL late april and early May is a

> great time to come because of all the Derby festival activities. Hugs

> :)Tree:):):)

>

> Re: a fall down the stairs / increasing Prednisone again

>

> Hi e,

>

> Words can't really express the feelings I'd like to share with you now,

> not nearly as well as a gentle hug could. I am so sorry for the sense of

> loss you must feel, with the recent passing away of your Grandmother. I

> am so sorry, too, to hear that Joe's situation still hasn't improved.

> has had his leg 'give-way' twice and both times it was so sad for

> me to see. Fortunately, he was not on stairs when it happened. Helping

> him up, I had tears in my eyes. Josh made light of it; still smiling,

> still trying to be strong; trying to find some humor in a bad situation,

> so we wouldn't feel sad for him.

>

> You know I was upset to read about the increased prednisone dose! How

> incredibly frustrating. It's always at the back of mind, that even

> though things are relatively stable right now it could happen again to

> ... at any moment. Then I look at it from the other side. If he

> were to increase his prednisone dose right now, the severe pain he's

> been having in his wrists everyday might be gone tomorrow. Or the next

> day. And then I worry that we're not doing the right thing, by not

> increasing it, although in some ways we're doing exactly the right

> thing. Our goal all along has been to decrease or discontinue it. So,

> we're successful. Yea! :)But he has daily pain. Boo!

> But it's mostly only in his wrists. So ... is that a good thing or a bad

> thing?

>

> We had a talk the other day about wrist fusion. How when the bones do

> finally fuse that there's no more pain in the joints. He hates the pain

> but yet he doesn't want to be left with a non-functioning wrist, either.

> Even if it meant no more pain, he wants to be able to bend his wrists

> and doesn't want to have to learn to live, permanently, with the

> stiffness and rigidity. Dr. Ono, the ortho he saw Oct 1st, talked with

> him about joint injections. Gave him some time to think about it more

> while at the same time trying an increased dose of NSAID to see if that

> helped at all (it hasn't). The other night we saw Dr. Ono on the news,

> talking about his imminent departure to Iraq. Now Josh feels like he

> missed an opportunity. He was scared about having a joint injection done

> but now feels like it might be worth it, if it worked well. Despite his

> fears of the procedure.

>

> Okay. Enough about all that. I really just wanted you to know that you

> and your daughter are in our thoughts and we can understand the pressure

> and frustration you're probably feeling about everything right now. I'm

> so sorry that you've got so much going on right now and I hope that

> things will get better soon.

>

> Aloha,

> Georgina