Re: Krystal's Appointment

[Guest guest]

Sorry to hear of your frustration. I have a friend with fibro and it is

very tough. She does take an anti depressant and finds that seems to

help. I am not sure why, but it does. She too has done all that you are

doing, and is having problems with work over this. It is a very

difficult situation. I hope some answers are found soon for Krystal.

Hugs to you, and feel free to vent whenever - that is one of the best

things about this list - we all do truly understand. Michele ( 17,

pauci & spondy)

Krystal's Appointment

Krystal had her appt with the rhuemetologist today. They are redoing

all her lab work, plus adding in a bunch more. The dr believes she may

have fibromyalgia as he said there are 18/19 pain points for this, and

Krystal has them all. In addition, she is chronically fatigued. So it

breaks down to either JRA or fibromyalgia or JRA and fibromyalgia. We

did get the scripts for bars for toilet and tub as well as the toilet

riser. No new meds until we know what we are dealing with, just an

increase in the ultraset to maximum dosage. We go back in 2 week for

lab results, etc.

The positive side is that they said that fibromylagia is not

degenerative while JRA is. However, the negative side is that they can

treat pain and fatigue to some extent but not totally if it is fibro,

but that people have to basically learn how to 'work around it'.

Krystal took the news really well. She was not surprised that they want

to add something else to her list of problems. It's like oh well,

what's new--not much. I, on the other hand, am so incredibly frustrated.

I know that the tests need to be done, it needs to be narrowed down,

etc. I was just hoping for more, I don't know what that 'more' is, just

something. Perhaps something to ease pain, even if temporary, at least

until her next appointment.

I heard the same old thing today--she needs to slow down and not do

as much. I get so frustrated because she isn't " doing " anything. When

class is in session, she attends 5 two to two and half hour classes

weekly and she works 25-20 hours a week. This wipes her out, often

times she is wiped out before her week begins and has done nothing at

all but try to rest up for the upcoming week. She's on scholarship, so

she has to maintain 15 credit hours per semester to keep her

scholarship. She has to work to make her car payment. She has to go to

classes to get her degree so she can get into her job field, have a

future that she has chosen for herself.

They gave us a pamphlet talking about changing jobs, she did this

and still it is physically trying on her. Her new employer has been

wonderful and is working with her, but they have limits that they can go

to. She's a cashier, they provided a chair, no physical stuff like

climbing step ladders, etc. She nearly lost her last job because she

became increasingly incapable of doing the job. She nearly lost her

scholarship because she increasingly found days she couldn't physically

move to get to and sit through the class.

They said stress reduction. She told them that she isn't under

stress, other than that cause by what she can't do because of her

current medical situation. Stress reduction--well, do something about

the pain and stiffness and inability to move and her stress would

drastically be reduced. Do something about the rashes and cracking dry

skin, etc. We discuss skin and dermetolgists at the next appt as well.

We replaced beds, something more comfortable for her, we replaced

furniture, something firmer and higher to ease her getting up and down,

we got her a laptop since writing it out, she replaced her car for

something totally automated in locks, etc. We have stragically placed

bars, etc to ease her day. We are adding things to the bathroom. In my

opinion, this isn't something to 'learn how to work around' as they said

with fibro. My grandfather is in his 90's and he has more mobility,

more agility, far less pain than my daughter. I'm hoping I just took

things a little too off because my frustration level is high. And

because we had such a problem with family doctors in the past.

Basically, it's my problem, my issues, the chip on my shoulder and that

these really are fully competent people, just got to give them a chance.

My frustration is probably because I know she is going to have at

least another two weeks of the same day to day she's had for most of

this year with nothing to alleviate any thing, and there is absolutely

nothing I can do to make it better for her. As I told the dr, she is

non-functional for basic everyday things--getting up from a

sitting/laying position, opening a bottle of water, unlocking a car,

etc. Now that classes are out, she works a 4 hour shift a couple of

times a week, and the rest of her days are spent sleeping with a heating

pad except when getting up for dinner or bathroom.

Krystal went hoping they would give her something today, but

doubting it. I went frustrated and left frustrated because they're

really pretty convinced about the fibro, the main question is if she has

JRA, or was it a misdiagnosis originally or if she has it but it isn't

acting up yet fibro is. Nothing concrete yet. And advice about cutting

back to someone who doesn't do 8 hours of anything as she alternates her

days between school and work so that she is only doing minimum of 4

hours a day to maximum of 6 hours a day and does absolutely nothing else

such as hobbies or fun. I don't think she is asking for much--just the

ability to do 8 hours a day which she can divide between school, work

and fun/hobbies.

Thanks for letting me vent my frustration.

[Guest guest]

---Hi ,

What a miserable appointment for you. I know it can be so difficult

to finally make it to the doctors appointment with high hopes that

something can finally be done, only to hear that you have to wait

longer as well as consider additional diagnosis.

I am glad to hear the Krystal was able to take things in stride.

She is a tough girl and I am sure that you are so proud of her.

I was reading about her college studies and wondered if there was

anyway that she could take some of her courses independently. I am

sure she would find it so much easier to take the course work via

computer and be able to study from the comfort of her bedroom. I

know this isn't possible with all classes but maybe it would work

out with a few?

Keeping you in my prayers and hoping that you will get some positive

news at the next doctor visit.

(drea 9 systemic)

In , " Tepper, Michele " <MTepper@f...> wrote:

> Sorry to hear of your frustration. I have a friend with fibro and

it is

> very tough. She does take an anti depressant and finds that seems

to

> help. I am not sure why, but it does. She too has done all that

you are

> doing, and is having problems with work over this. It is a very

> difficult situation. I hope some answers are found soon for

Krystal.

> Hugs to you, and feel free to vent whenever - that is one of the

best

> things about this list - we all do truly understand. Michele

( 17,

> pauci & spondy)

>

> Krystal's Appointment

>

>

> Krystal had her appt with the rhuemetologist today. They are

redoing

> all her lab work, plus adding in a bunch more. The dr believes

she may

> have fibromyalgia as he said there are 18/19 pain points for this,

and

> Krystal has them all. In addition, she is chronically fatigued.

So it

> breaks down to either JRA or fibromyalgia or JRA and

fibromyalgia. We

> did get the scripts for bars for toilet and tub as well as the

toilet

> riser. No new meds until we know what we are dealing with, just an

> increase in the ultraset to maximum dosage. We go back in 2 week

for

> lab results, etc.

> The positive side is that they said that fibromylagia is not

> degenerative while JRA is. However, the negative side is that they

can

> treat pain and fatigue to some extent but not totally if it is

fibro,

> but that people have to basically learn how to 'work around it'.

> Krystal took the news really well. She was not surprised that

they want

> to add something else to her list of problems. It's like oh well,

> what's new--not much. I, on the other hand, am so incredibly

frustrated.

> I know that the tests need to be done, it needs to be narrowed

down,

> etc. I was just hoping for more, I don't know what that 'more'

is, just

> something. Perhaps something to ease pain, even if temporary, at

least

> until her next appointment.

> I heard the same old thing today--she needs to slow down and

not do

> as much. I get so frustrated because she isn't " doing " anything.

When

> class is in session, she attends 5 two to two and half hour classes

> weekly and she works 25-20 hours a week. This wipes her out, often

> times she is wiped out before her week begins and has done nothing

at

> all but try to rest up for the upcoming week. She's on

scholarship, so

> she has to maintain 15 credit hours per semester to keep her

> scholarship. She has to work to make her car payment. She has to

go to

> classes to get her degree so she can get into her job field, have

a

> future that she has chosen for herself.

> They gave us a pamphlet talking about changing jobs, she did

this

> and still it is physically trying on her. Her new employer has

been

> wonderful and is working with her, but they have limits that they

can go

> to. She's a cashier, they provided a chair, no physical stuff like

> climbing step ladders, etc. She nearly lost her last job because

she

> became increasingly incapable of doing the job. She nearly lost

her

> scholarship because she increasingly found days she couldn't

physically

> move to get to and sit through the class.

> They said stress reduction. She told them that she isn't under

> stress, other than that cause by what she can't do because of her

> current medical situation. Stress reduction--well, do something

about

> the pain and stiffness and inability to move and her stress would

> drastically be reduced. Do something about the rashes and

cracking dry

> skin, etc. We discuss skin and dermetolgists at the next appt as

well.

> We replaced beds, something more comfortable for her, we

replaced

> furniture, something firmer and higher to ease her getting up and

down,

> we got her a laptop since writing it out, she replaced her car for

> something totally automated in locks, etc. We have stragically

placed

> bars, etc to ease her day. We are adding things to the bathroom.

In my

> opinion, this isn't something to 'learn how to work around' as

they said

> with fibro. My grandfather is in his 90's and he has more

mobility,

> more agility, far less pain than my daughter. I'm hoping I just

took

> things a little too off because my frustration level is high. And

> because we had such a problem with family doctors in the past.

> Basically, it's my problem, my issues, the chip on my shoulder and

that

> these really are fully competent people, just got to give them a

chance.

> My frustration is probably because I know she is going to have

at

> least another two weeks of the same day to day she's had for most

of

> this year with nothing to alleviate any thing, and there is

absolutely

> nothing I can do to make it better for her. As I told the dr, she

is

> non-functional for basic everyday things--getting up from a

> sitting/laying position, opening a bottle of water, unlocking a

car,

> etc. Now that classes are out, she works a 4 hour shift a couple

of

> times a week, and the rest of her days are spent sleeping with a

heating

> pad except when getting up for dinner or bathroom.

> Krystal went hoping they would give her something today, but

> doubting it. I went frustrated and left frustrated because they're

> really pretty convinced about the fibro, the main question is if

she has

> JRA, or was it a misdiagnosis originally or if she has it but it

isn't

> acting up yet fibro is. Nothing concrete yet. And advice about

cutting

> back to someone who doesn't do 8 hours of anything as she

alternates her

> days between school and work so that she is only doing minimum of 4

> hours a day to maximum of 6 hours a day and does absolutely

nothing else

> such as hobbies or fun. I don't think she is asking for much--

just the

> ability to do 8 hours a day which she can divide between school,

work

> and fun/hobbies.

> Thanks for letting me vent my frustration.

>

>

>

[Guest guest]

-..

My heart aches for the pain i hear though your post. Theres nothing

worse for a parent than to see your child in pain and not being able

to do anything for it. I think when we go on doctors appts we are

all relieved and " excited " thinking that they will have all the

answers, say the magic words and fix everything and when these appts

fall short of this we are disapointed and frustated.

I liked s advice about trying to get some online classes going

for her. Have you thought of some kind of fundrasier to do that

could raise money to pay for the car so she would not have to work

at all and can concertate on getting rest and " just " worrying about

her studies.

I have no real advice, but please know that theres a lot of folk

here that CAN do one thing for you and that is CARE!!

hugs to you both.

Helen and (7,systemic)

-- In , " Kelleka " <Kelleka@c...> wrote:

> Krystal had her appt with the rhuemetologist today. They are

redoing all her lab work, plus adding in a bunch more. The dr

believes she may have fibromyalgia as he said there are 18/19 pain

points for this, and Krystal has them all. In addition, she is

chronically fatigued. So it breaks down to either JRA or

fibromyalgia or JRA and fibromyalgia. We did get the scripts for

bars for toilet and tub as well as the toilet riser. No new meds

until we know what we are dealing with, just an increase in the

ultraset to maximum dosage. We go back in 2 week for lab results,

etc.

> The positive side is that they said that fibromylagia is not

degenerative while JRA is. However, the negative side is that they

can treat pain and fatigue to some extent but not totally if it is

fibro, but that people have to basically learn how to 'work around

it'. Krystal took the news really well. She was not surprised that

they want to add something else to her list of problems. It's like

oh well, what's new--not much. I, on the other hand, am so

incredibly frustrated. I know that the tests need to be done, it

needs to be narrowed down, etc. I was just hoping for more, I don't

know what that 'more' is, just something. Perhaps something to ease

pain, even if temporary, at least until her next appointment.

> I heard the same old thing today--she needs to slow down and

not do as much. I get so frustrated because she isn't " doing "

anything. When class is in session, she attends 5 two to two and

half hour classes weekly and she works 25-20 hours a week. This

wipes her out, often times she is wiped out before her week begins

and has done nothing at all but try to rest up for the upcoming

week. She's on scholarship, so she has to maintain 15 credit hours

per semester to keep her scholarship. She has to work to make her

car payment. She has to go to classes to get her degree so she can

get into her job field, have a future that she has chosen for

herself.

> They gave us a pamphlet talking about changing jobs, she did

this and still it is physically trying on her. Her new employer has

been wonderful and is working with her, but they have limits that

they can go to. She's a cashier, they provided a chair, no physical

stuff like climbing step ladders, etc. She nearly lost her last job

because she became increasingly incapable of doing the job. She

nearly lost her scholarship because she increasingly found days she

couldn't physically move to get to and sit through the class.

> They said stress reduction. She told them that she isn't

under stress, other than that cause by what she can't do because of

her current medical situation. Stress reduction--well, do something

about the pain and stiffness and inability to move and her stress

would drastically be reduced. Do something about the rashes and

cracking dry skin, etc. We discuss skin and dermetolgists at the

next appt as well.

> We replaced beds, something more comfortable for her, we

replaced furniture, something firmer and higher to ease her getting

up and down, we got her a laptop since writing it out, she replaced

her car for something totally automated in locks, etc. We have

stragically placed bars, etc to ease her day. We are adding things

to the bathroom. In my opinion, this isn't something to 'learn how

to work around' as they said with fibro. My grandfather is in his

90's and he has more mobility, more agility, far less pain than my

daughter. I'm hoping I just took things a little too off because my

frustration level is high. And because we had such a problem with

family doctors in the past. Basically, it's my problem, my issues,

the chip on my shoulder and that these really are fully competent

people, just got to give them a chance.

> My frustration is probably because I know she is going to have

at least another two weeks of the same day to day she's had for most

of this year with nothing to alleviate any thing, and there is

absolutely nothing I can do to make it better for her. As I told

the dr, she is non-functional for basic everyday things--getting up

from a sitting/laying position, opening a bottle of water, unlocking

a car, etc. Now that classes are out, she works a 4 hour shift a

couple of times a week, and the rest of her days are spent sleeping

with a heating pad except when getting up for dinner or bathroom.

> Krystal went hoping they would give her something today, but

doubting it. I went frustrated and left frustrated because they're

really pretty convinced about the fibro, the main question is if she

has JRA, or was it a misdiagnosis originally or if she has it but it

isn't acting up yet fibro is. Nothing concrete yet. And advice

about cutting back to someone who doesn't do 8 hours of anything as

she alternates her days between school and work so that she is only

doing minimum of 4 hours a day to maximum of 6 hours a day and does

absolutely nothing else such as hobbies or fun. I don't think she

is asking for much--just the ability to do 8 hours a day which she

can divide between school, work and fun/hobbies.

> Thanks for letting me vent my frustration.

>

>

>

[Guest guest]

,

You have every right in the world to be frustrated!! I'm frustrated

for you reading your posts. It's like you are at square one again,

which is a little understandable because it's a new doc. However,

didn't they have all kinds of past bloodwork results to look at

also??

How about a hot tub? There were some recent posts a couple weeks

ago where someone got Make A Wish or some charity like that to

donate one, or see if insurance will help. I can't imagine not

being able to get through the day, every day for a teenager. I

would be proud as heck of Krystal to be doing everything she is

doing and trying to be a responsible young adult!!

Warm warm hugs for you guys.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Krystal sounds like an amazing young woman, resilient and out to do what

she has to do to achieve her goals. I am with what someone else

mentioned, maybe have some sort of fundraiser to pay for her car. There

are all kinds of new treatments out there for fibro, I am not personally

familiar with them, but my cousin has fibro. You might want to check the

groups listing and see if there is a support group you could join

that might offer some advice in that direction.

Take care.

and Rob 15 Spondy

On Mon, 27 Dec 2004 14:53:57 -0600 " Kelleka " <Kelleka@...> writes:

Krystal had her appt with the rhuemetologist today. They are redoing all

her lab work, plus adding in a bunch more. The dr believes she may have

fibromyalgia as he said there are 18/19 pain points for this, and Krystal

has them all. In addition, she is chronically fatigued. So it breaks

down to either JRA or fibromyalgia or JRA and fibromyalgia. We did get

the scripts for bars for toilet and tub as well as the toilet riser. No

new meds until we know what we are dealing with, just an increase in the

ultraset to maximum dosage. We go back in 2 week for lab results, etc.

The positive side is that they said that fibromylagia is not

degenerative while JRA is. However, the negative side is that they can

treat pain and fatigue to some extent but not totally if it is fibro, but

that people have to basically learn how to 'work around it'. Krystal

took the news really well. She was not surprised that they want to add

something else to her list of problems. It's like oh well, what's

new--not much. I, on the other hand, am so incredibly frustrated. I know

that the tests need to be done, it needs to be narrowed down, etc. I was

just hoping for more, I don't know what that 'more' is, just something.

Perhaps something to ease pain, even if temporary, at least until her

next appointment.

I heard the same old thing today--she needs to slow down and not do

as much. I get so frustrated because she isn't " doing " anything. When

class is in session, she attends 5 two to two and half hour classes

weekly and she works 25-20 hours a week. This wipes her out, often times

she is wiped out before her week begins and has done nothing at all but

try to rest up for the upcoming week. She's on scholarship, so she has

to maintain 15 credit hours per semester to keep her scholarship. She

has to work to make her car payment. She has to go to classes to get

her degree so she can get into her job field, have a future that she has

chosen for herself.

They gave us a pamphlet talking about changing jobs, she did this and

still it is physically trying on her. Her new employer has been

wonderful and is working with her, but they have limits that they can go

to. She's a cashier, they provided a chair, no physical stuff like

climbing step ladders, etc. She nearly lost her last job because she

became increasingly incapable of doing the job. She nearly lost her

scholarship because she increasingly found days she couldn't physically

move to get to and sit through the class.

They said stress reduction. She told them that she isn't under

stress, other than that cause by what she can't do because of her current

medical situation. Stress reduction--well, do something about the pain

and stiffness and inability to move and her stress would drastically be

reduced. Do something about the rashes and cracking dry skin, etc. We

discuss skin and dermetolgists at the next appt as well.

We replaced beds, something more comfortable for her, we replaced

furniture, something firmer and higher to ease her getting up and down,

we got her a laptop since writing it out, she replaced her car for

something totally automated in locks, etc. We have stragically placed

bars, etc to ease her day. We are adding things to the bathroom. In my

opinion, this isn't something to 'learn how to work around' as they said

with fibro. My grandfather is in his 90's and he has more mobility, more

agility, far less pain than my daughter. I'm hoping I just took things a

little too off because my frustration level is high. And because we had

such a problem with family doctors in the past. Basically, it's my

problem, my issues, the chip on my shoulder and that these really are

fully competent people, just got to give them a chance.

My frustration is probably because I know she is going to have at

least another two weeks of the same day to day she's had for most of this

year with nothing to alleviate any thing, and there is absolutely nothing

I can do to make it better for her. As I told the dr, she is

non-functional for basic everyday things--getting up from a

sitting/laying position, opening a bottle of water, unlocking a car, etc.

Now that classes are out, she works a 4 hour shift a couple of times a

week, and the rest of her days are spent sleeping with a heating pad

except when getting up for dinner or bathroom.

Krystal went hoping they would give her something today, but doubting

it. I went frustrated and left frustrated because they're really pretty

convinced about the fibro, the main question is if she has JRA, or was it

a misdiagnosis originally or if she has it but it isn't acting up yet

fibro is. Nothing concrete yet. And advice about cutting back to

someone who doesn't do 8 hours of anything as she alternates her days

between school and work so that she is only doing minimum of 4 hours a

day to maximum of 6 hours a day and does absolutely nothing else such as

hobbies or fun. I don't think she is asking for much--just the ability

to do 8 hours a day which she can divide between school, work and

fun/hobbies.

Thanks for letting me vent my frustration.

[Guest guest]

My thanks to all of you for your support, and most especially for your caring!

We, Krystal and I both appreciate it.

This next semester, Krystal has 3 online/telecourses, and 2 in person

classes that can't be taught online. Since those two classes are given at other

times as well, in Jan when staff is back, we are going to look at doing

individual study as long as she checks in with the instructor periodically. I

figure it won't hurt to check to see what the college's limits are.

I doubt if a fundraiser would do anything at this point. Currently, our

area is inundated with fundraisers for kids and young adults with various

problems and no one is meeting their goal. I'm looking at seeing if my dad

could help us with this one. He had offered to pay for my oldest daughter's

costs that weren't covered by her scholarship if she couldn't get a student

loan.

Insurance would max out for the year for hard equipment if we had a hot tub

prescribed. However, that did bring to mind that if hot tub therapy was

prescribed, they would probably pay for a water membership at a gym with us

paying our copay. It is something to investigate.

I am proud of Krystal. She has the attitude that she can't pick the cards

she's dealt, so she'll deal with them the best she can. She has a future

planned that she'd like to accomplish for herself, it's just a matter of finding

different ways to accomplish them.

I got a hold of a friend of mine who has CFS, her mom apparently has fibro,

diagnosed late in life. My friend told me that her mother got her's under

control by taking vacation and medical leave, and taking a large period of time

doing nothing but sitting around the house doing specific stretches, changing

her diet and taking time to heal. She allowed no stress in her life at all.

The difference being that my friend's mom was at a point in her life where she

could do this, Krystal is just starting her adult life.

Another thing we are going to check on in Jan is if Krystal's scholarships

can be put on hold, basically a medical leave, then be reinstated. All of this

is 'just in case' as until her next appointment, we don't know what she is

dealing with. It's the waiting game for now, and gathering as much information

as we possibly can between now and then.

Thank you again for your support, caring and the wonderful ideas expressed.

Definitely got us to thinking about what we can do, what we can gather

information about, etc.

[Guest guest]

,

Unfortunately, or fortunately, this darn disease as well as other

diseases/hardships, makes us stronger for the better in mysterious

ways. At the American Juvenile Arthritis Conference in July, I

heard numerous stories from parents about the extraordinary

accomplishments their JRA children achieved. If you asked the

question here, you would probably get 200 responses about the

amazing things these children have endured. That's a result of

having strong parents with strong minds and a never say never

attitude. You guys fit that profile to a " T " . Keep plugging away

and use every resource you can find. (Continue to vent anytime).

Stacia and Hunter 8 systemic, iritis

[Guest guest]

-..

You are such an awesome advocate for Krystal...whatever the outcome

I know from your strengh and support Krystal WILL get to do all shes

planned for her life and then some!!!!!

Hugs Helen and (7,systemic)

-- In , " Kelleka " <Kelleka@c...> wrote:

> My thanks to all of you for your support, and most especially for

your caring! We, Krystal and I both appreciate it.

> This next semester, Krystal has 3 online/telecourses, and 2 in

person classes that can't be taught online. Since those two classes

are given at other times as well, in Jan when staff is back, we are

going to look at doing individual study as long as she checks in

with the instructor periodically. I figure it won't hurt to check

to see what the college's limits are.

> I doubt if a fundraiser would do anything at this point.

Currently, our area is inundated with fundraisers for kids and young

adults with various problems and no one is meeting their goal. I'm

looking at seeing if my dad could help us with this one. He had

offered to pay for my oldest daughter's costs that weren't covered

by her scholarship if she couldn't get a student loan.

> Insurance would max out for the year for hard equipment if we

had a hot tub prescribed. However, that did bring to mind that if

hot tub therapy was prescribed, they would probably pay for a water

membership at a gym with us paying our copay. It is something to

investigate.

> I am proud of Krystal. She has the attitude that she can't

pick the cards she's dealt, so she'll deal with them the best she

can. She has a future planned that she'd like to accomplish for

herself, it's just a matter of finding different ways to accomplish

them.

> I got a hold of a friend of mine who has CFS, her mom

apparently has fibro, diagnosed late in life. My friend told me

that her mother got her's under control by taking vacation and

medical leave, and taking a large period of time doing nothing but

sitting around the house doing specific stretches, changing her diet

and taking time to heal. She allowed no stress in her life at all.

The difference being that my friend's mom was at a point in her life

where she could do this, Krystal is just starting her adult life.

> Another thing we are going to check on in Jan is if Krystal's

scholarships can be put on hold, basically a medical leave, then be

reinstated. All of this is 'just in case' as until her next

appointment, we don't know what she is dealing with. It's the

waiting game for now, and gathering as much information as we

possibly can between now and then.

> Thank you again for your support, caring and the wonderful

ideas expressed. Definitely got us to thinking about what we can

do, what we can gather information about, etc.

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