Veri

October 2, 2008

Hi Veri,

I apologize it has been two days until I got to the computer - it was dinnertime

when we got home from the appt, all 3 grandkids were here, yada, yada...(and

yes, the " baby " is 2 1/2 - she is sweet, smart, hilarious, headstrong and has

boundless energy...some days she adds to my stress, but she is always our

greatest joy. She surely wears me out! I watch her 5 days a week for my oldest

daughter as she is a single mom- she also has twin 12 y.o.) Yesterday was

another hectic day...

Anyway, the dr said it could have been related to her being ill, i.e. being

overtired and likely dehydrated, combined with her issues of chronic low blood

pressure (~100/66 normally), and (looking at past labs) always having a somewhat

low sodium level, so he wants her to increase her fluid AND sodium levels The

other consideration is blood sugar levels - if she has another episode, he will

do extended glucose tolerance testing. The fainting is referred to as a

vasovagal syncope and he found it very interesting (he's a relatively new dr for

her) is she also has cholinergic uticaria (hives that occur in response to any

sort of temp change to or on her skin) - he says both are related, I guess as

they have to do with something overreacting in her autonomic system. Her

present immuno has her on THREE antihistamines at once, which makes me

uncomfortable, so he has referred her to another allergist, and her appt is

mid-November. I hope she can help

with all these rashes (not just temp related) and constant itching.

How did Jaye's IEP go yesterday? I understand how it is with Jaye

not wanting others to know of her issues, and she sounds very independent...my

is the same...it can be a very good thing, but there are times when it

would benefit them to accept the help. I understand ( Jaye just started

high school this year?) the last thing they want is something that will cause

them to stand out from the crowd in a way that implies they are getting special

treatment or might cause someone to " feel sorry " for them...there was a great

speaker at the JA Conference (young adults) this summer on this topic and I

think it helped , in terms of school...I hope...we shall see. Yet,

Jaye would probably have less pain and less fatigue at the end of the day if she

did not push herself too much during the day, right?

I don't recall why the dr changed Jaye to the Mobic? Mobic never helped

for , and from what many members chimed in here to Donna's questions about

it, many had the same issue. If it doesn't give her more relief soon, is there

another option?

I am sorry you are having headaches and problems with your blood pressure.

Are you on meds for your bp? I hope your appt goes well on the 15th...and the

dr can give you some answers.

Please let us know how Jaye's IEP went yesterday and let us know what you

find out when you go to your appt on the 15th. I will be praying for you and

Jaye.

From: veristroud@... <veristroud@...>

Subject:

Date: Monday, September 29, 2008, 4:37 PM

I hope you have a good day tomorrow and pray that the appt will go well for

. I am sure that after waiting for an hour and a half and then not getting

in to see the doctor she was probably irritated.? The good thing is that they

only put you off for one day and will see her tomorrow.

Jaye is doing well right now. She has more pain then she had been having

since we changed her med from Naproxin to mobic. I just hope that the mobic will

kick in soon for her and give her more relief. She keeps going though so it has

not got her down. She just mentions that walking very far at all hurts and

climbing stairs is painful. She has only a very few stairs at school so that is

good but the school is large and she does have a distance to walk between some

of her classes. She will not ask for extra time or leave early so she just

hurries and then hurts.? She did not want me to call the school to talk to them

so I will just wait unil Wednesday at her IEP when I have a change to mention it

to several people. does not like to talk about her issues and so she is

not very happy that she is invited to the IEP. She does not realize that she

could refuse to attend and so I am not going to tell her. I want her there and

she is a good kid so

will be there and will not be too grumpy. My hands are still giving me fits and

I have not made it to the doctor yet. My appt is Oct. 15th.? My knees and feet

have also started giving me trouble but not as bad as the hands so I will just

bear with it and go day to day. Right now I am having problems with my blood

pressure and headaches so am trying to figure that out first. I've had a

headache for over a week now. It is not severe and I can work with it but it

just nags and exhausts me so I am afraid it is related to my blood pressure

problem.?

Be sure to post tomorrow after the appt at least a short one to let us know how

things are going. Know that I will continue to keep you and ?in my

prayers. By the way who is the baby you mentioned? I'd assume a grandbaby?

Veri & Jaye 14 poly

November 12, 2008

Hello Veri,

I am glad Jaye has been doing pretty well. Today is your visit to her

rheumy again, so hopefully in the next day or so you will update how it went.

As for the orthotics, hopefully Jaye is feeling the benefit and adjusting

to them. used orthotics and they made such a difference (that was

pre-diagnosis). She prefers her flip-flop style sandals here in California when

it's warm, but when she had any sort of activity, they were so helpful. She

still has them.

is doing better, thank you. Our orthopedist is an orthopedic surgeon and

we first started seeing him when was about 8 and havinh chronic

tendonitis. He is the best in our area and is comfortable with him. I

have had two surgeries by him and we both have had injections - I have good

confidence in him. Her other hip was hurting a lot Monday, so she was

considering seeing him about it (she was overusing it to compensate for the bad

hip) but it seems to be calming down. He couldn't believe the ER did not

evaluate well enough to diagnosis, so then she was using heat which made a bad

situation much worse! At least we know now. Apparently jra/ra can bring on

bursitis and this has been a real problem area for . She sees her rheumy

next week and is supposed to start a new med with the Enbrel, instead of mtx,

since mtx causes cellulitis with her PIDD.

Your trip to Paraguay sounds amazing and you deserve it. I am so pleased you

are able to take the trip. How long will you be gone? I hope you will tell us

all about it when you return.

As for what you said about not understanding why God allows things to happen, I

still won't understand the why's, but we got a new pastor about 6 weeks ago and

he is amazing...he is doing a series right now called, " God is greater

that.... " and each week is a different topic. I feel as if he designed the

series just for me....anyway, God is ministering to me and it is helping.

Let us know how Jaye's visit went. Have an amazing trip and visit with

you family.

Hugs,

From: veristroudaol (DOT) com <veristroudaol (DOT) com>

Subject: Re: 's flare

@group s.com

Date: Tuesday, November 4, 2008, 7:07 PM

,

So sorry to hear that is flaring and so badly. I will pray that things

will turn around soon for her so she can have some relief.? I know this is so

hard on you as well.? I am sure you will keep us informed as to how she is

doing.?

Veri & Jaye 14 poly

's flare

Sat a.m. awoke early with a level 10 pain in her left hip, radiating to

her knee.? With pain meds and heating pad, she slept a bit more, but again the

pain awoke her.? On-call nurse and rheumy insisted we take her directly to ER to

rule out infection in joint.? After x-ray, lab testing, physical exam, meds for

pain control, they said they felt it was a bad flare but not an infection and

sent her home on pred and more pain meds. She has now developed her rash

covering her thighs, a scarlet rash across her cheeks (no fever), and more

joints involved, with her pain level back to 9-10 this afternoon.? Her rheumy is

out of town for a week+ but my rheumy said to take her back to ER for shot of

steroids and pain control....we are waiting for my older nieces to get home from

school to watch the toddler...?

Too often (99%) the drs at this ER seem lost as to what to do with jra/pidd

pts....

would appreciate prayers for wisdom for the dr, a nurse with a touch of

compassion, but mostly some relief for 's.... (she hates the hospital and

hates the ER, so for her to be willing to go twice in 3 days....she is in

agony...)

Thank you...

nancy (amanda, poly)

November 13, 2008

I am glad to hear that is doing a bit better. It is good that she has had

the same ortho for a long time. When you find a good doctor you want to stick

with them and it seems that they are on the move more often then we like.? I am

glad you have a new pastor that you enjoy. It is amazing when you realize that

the sermon being preached is meant just for you. That means that you are not

only asking for God's help but you are hearing His?voice and you are willing for

His guidance.

My Jaye had a great appt today, I posted an update so you can read that

if you want to, I'll not duplicate what I put in that post.? She is such a trip

these days. Today she tried to convice the rheumy to change his scheduled days

of work to fit our schedule better. He only works at the other clinic on

Monday's and I am not able take Monday's off very well and she does not like

coming to the downtown clinic. She told him it is too far for her to walk and

besides that we get lost. She also suggested to him that he should help her

break all of the field visual test machines so that she does not have to do that

test anymore. She asked him if he knew how many of the machines they had. She

infomed him that her birthday is in January and that when she comes to see him

at the end of January he should have a birthday present for her. He told her

that she should bring the present since it is near her birthday and since he is

taking the time to see her. He also told her that he wanted a picture of her to

put on his bullitin board with all his other patients. After our scary trip to

the apptointment it sure was good to laugh before we got back in the car to

drive home. And we did not take any wrong turns on our way home, NOT EVEN ONE.

I will let you know about my trip to Paraguay. Jaye is more excited then

I am about me going I think. She keeps telling me that I deserve it and so does

Kristie Jo. They both remind me of all the things I do for them and nothing for

me. I just need them to promise me to not get sick while I am gone. If they do,

I assume that they will not tell me until I get home.?