Re: a fall down the stairs / increasing Prednisone again

[Guest guest]

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

boundforlondon 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)