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[Guest guest]

Hi ,

Things are going awesome for my hubby and I can't tell you how much

it means to me to know that you have prayed for us.

bob and I are both working together from home and we hire and train

staff to work with individuals who have developmental disabilities.

We love our jobs and are very grateful that it allows us the freedom

to be available for Aundrea.

Aundrea is still struggling. More bad days than good. Last Sunday

night she came home from youth group crying. She said she was angry

at God. She was sick of being in pain and mad that he hadn't healed

her. I tried to comfort her, but in all honesty I don't think I did

a very good job.

She showed me this web page that she created entirely on her own for

kids with arthritis. I was impressed with her and hopeful that it

would be a therapeutic outlet. She told me that she had 4 new people

visit it the other day. She was pretty excited about that.

I guess it's time for me to go check on my kiddo's. Drea managed

about 3 hours of school today and my son has bronchitis so he is home

sick as well.

I hope you and Rob are both feeling better today. Sure hasn't been

an easy winter for either of you!

P.S. How is tree getting along? I have heard an update on her

forever1 :-)

(aystemic jra/gerd)-

-- In , snooksmama@... wrote:

>

>

> Thanks for your wonderful words of comfort...I'm feeling more

optimistic today...

> How are things going for your husband? What has he decided to do? I

am keeping you guys in my prayers...

> and Rob 18 JAS

>

> Re: Arthritis stinks!

>

>

> > ,

> >

> > You would be the first one to tell us not to think twice about

> > having

> > a good vent or rant session when we need one.

> >

> > I know just what you are talking about along with I am sure the

> > rest

> > of our group members.

> >

> > In my head, I know that there is little that others can say,

> > because

> > they just don't get it. But the constant comments of

> > " gosh, drea

> > looks great to me " can get darn right annoying. Yes she

> > does look

> > great, the problem with the comment is you diminish the fact

> > that on

> > the inside, she doesn't feel great.

> >

> > I was thinking the other day about how often someone will ask

> > how

> > Aundrea is doing and I will say " she is a bit better today, she

> > made

> > it to school " . They will comment back, oh thats wonderful

> > I am glad

> > to here that is back to normal. In my head, I wonder what

> > normal

> > is. Perhaps, the two hours that she made it to school that

> > day are

> > normal. Maybe the fact that we had to get a handicap

> > placard so that

> > she wouldn't have to walk so far or the fact that her joints

> > hurt to

> > bad for her to join her girlfriends for the short walk home

> > is " normal " .

> >

> > Yep, its just a rant session. The one nice thing is you

> > can share

> > those feelings here. You can do so and know that there are

> > others

> > that " just get it " . And you can rant and vent and know

> > that there is

> > no judgement.

> >

> > You are both in my prayers.

> >

> > (aundrea 12 systemic jra/gerd)

> >

> >

> > >

> > > Ok, get ready for a vent...READ AT YOUR OWN RISK

> > > So, Rob is off all his meds (which are only methotrexate and

> > Enbrel...NO NSAIDS) because of the mono. Got his EBNA titre and

> > its

> > negative, which means he hasn't made antibodies yet to the mono,

> > so

> > no meds for at least 2 more weeks. He says he is feeling bad,

> > won't

> > elaborate (away at school) and is blaming it on the

> > weather....felt

> > bad when I brought up the no meds, and then it dawned on

> > him...poor

> > baby.

> > > I'm feeling horrible, meds haven't kicked in yet, and off my

> > prednisone...yes, I know it would give me relief, but I've

> > already

> > been on it almost continuously the past year and already have

> > osteopenia, so I'm stubbornly not taking it. One by one the

> > joints

> > have started flaring. The worst are my neck and my left elbow.

> > I'm

> > going to OT and PT in the mornings before work, alternating

> > days, and

> > feel like crap. Having to get up extra early to go to therapy

> > stinks,

> > sleep is not restful at all (unless I take the flexeril for my

> > neck

> > before bed, and then I'm still so groggy when I wake up its

> > terrible). Today, I had a substitue OT for my arm, who meant

> > well,

> > but I just wasn't in the mood to be told that eating berries and

> > fruits and taking omega 3's would make me 'all better'. Believe

> > me,

> > I've tried all that and my crappy immune system just keeps on

> > thinking my joints are the enemy...and here's an OT who I did

> > think a

> > lot of and thought was pretty current on things, and even she

> > doesn't

> > GET IT about arthritis!!

> > > I feel like CRAP! And so does Rob!!

> > > I know there are much worse things but I am just so tired of

> > being

> > told Oh, Rob looks so great and he doesn't look sick at all, and

> > they

> > never know what he goes through on a daily basis. He can't even

> > take

> > an advil, motril or naproxen, celebrex or mobic EVER HIS WHOLE

> > LIFE

> > that might even remotely help with this off-meds flare because

> > of his

> > kidney disease!!! I was heartbroken when I got in his car a few

> > months ago and saw a bottle of Tylenol Arthritis lying on his

> > seat...its like, that is terrible he is taking this med! It all

> > hit

> > home again.

> > > And here I am, a 47 year old adult dealing with this crap, and

> > thinking all the while that this is the hell my son has gone

> > through

> > since age 12. I KNOW there are much worse things, Lord knows I

> > see it

> > every day at work and feel very blessed, but I'm just feeling

> > tired

> > and having a pity party, and you are the only people who truly,

> > truly

> > understand...

> > > Ok, so would you all keep Rob in your prayers that he develops

> > antibodies SOON so he can go back on meds, and that the Enbrel

> > doesn't lose effectiveness when he is back on? I dread the

> > thought of

> > him going back to where he was...it took so long to get him

> > feeling

> > decent and here he is...

> > > I'm rambling too much as usual and know so many on this list

> > just

> > wish they had a dx and game plan for their child, so I'm sorry

> > for

> > this rant...

> > > and Rob 18 JAS

> > >

> > >

> > >

[Guest guest]

I am so glad that you and Bob have the jobs you do...God works in such amazing

ways! What a blessing! You are able to spend time with Aundrea and the

individuals with disabilities benefit from your work. How cool is that!!!!

I am so sorry for Aundrea. Tell her its ok to have a pity party now and

then...you have to let it out sometime (remember my post from last week?)

I heard something on the radio yesterday when I was having a really bad day.

Please share it with Aundrea...

In scripture, says that suffering allows us into the fellowship of

suffering with Christ, as He suffered on the cross. That thought has stayed with

me since then and allowed me to see my own suffering as a blessing, especially

during this Lenten season. It has also allowed me to understand my blind friend

with diabetes (she is 45 years old tomorrow and has been losing her sight since

her early 20's). She tells me all the time that her blindness is a blessing. I

am beginning to understand that now...

I haven't talked with Tree since just before Christmas. I need to call her soon

and catch up. I also haven't talked with in a bit, but Donna keeps up

with him and Tree and her husband have him over every weekend.

Rob will be in briefly this weekend to get labs drawn. 's mother is having

foot surgery friday and will spend the weekend with us after (its outpatient

surgery). Hopefully she will do well enough to be able to go home by Monday.

Anyway, I've had a significant attitude adjustment (thanks so much to all for

listening to my rant). I restarted prednisone today so hopefully things will be

on the upswing soon. Rob hasn't really told me much about how he is feeling so

this weekend I'll find out more. Hoping he's made those antibodies already and

doesn't have to miss any more doses of meds.

, please tell Drea that I am so proud of her website! What a great thing

she is doing. Maybe she should write to the Arthritis Foundation and they could

put a link to her website on their website and in the Kids Get Arthritis Too

newsletter? Just a thought...

and Rob 18 JAS

[Guest guest]

low-grade fever of 99.7...