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Hello Betty thomas, thanks for your mail,and thanks for warm welcome in the group,i am a 49 years mail living in pakistan,sarcoidosis was daignosed in april 2000,main symptoms were fatigue,low grade fever,inflamation on all small joints,erthema nodosom on my legs,dry cough,shortness of breath,low blood pressure,night sweats,and just an overall feeling of ill health,treatment given was prednisolone 5mg 6tab daily divided in three doses and methotraxate 3tab once in a week,it was continued about six month and then tapered to prednisolone 4 tab once in a week and imuran(azathiopran)2tab on alternate day,this treatment was continued upto 18 months,during this 2 years period most of the symptoms were suppressed but fatigue,low blood pressure,night sweats,little pain in small joints,and few other s are still there,in sun light i feel unhealthy due to excess vitamin d level in the body,now i am taking any medicine,please inform me about latest research and treatment of
sarcoidosis,and any advice about my case,i shall be higly tankfull to you. SHAHID.
Betty Thomas <bbutterfly@...

Hi Shahid and welcome to Sarcoidosis Support. I'm sorry if you have Sarcoidosis but I am glad you found us. This is a group of wonderful caring people. If you need support, understanding and knowledge, you have found it here. "Understanding", because we all have this disease and know what you are going through, "support" because we all need it and "knowledge" because we are all so willing to share what we know with one another.
Please post us and introduce yourself and tell us a little bit about what is going on with you. We're looking forward to getting to know you and welcome you into our "family". I think you will enjoy getting to know us too.

Betty Thomas - List Mom
bbutterfly@...

Betty
bbutterfly@...

To unsubscribe from this group, send an email to:

Hi Patrice,

I am glad to hear that Corrina is making progress.....and that the pulm belived you about what is up with her sats and will help you speak to the card about it. I hope that Nina comes home and is feeling much better soon...that little trooper needs to come home and be well...much love celeste

Betty,
Thanks for the welcome.
I was just diagnosed with Sarcoidosis on Friday. I have about 20 bumps,
lumps, nodules, whatever you call them, on my arms and legs. They are a little
bit painful but only if I touch them or accidentally hit them. I went to a
dermatologist and he took tons of blood and did a skin biopsy on one of the
lumps
on my arm. He called Friday to say they think it is Sarcoidosis. He made it
sound like it was no big deal. He said it is nothing bad for most patients
and for me to make an appt to come in for more testing at my convenience.
So, I got on the internet and did a little research. I still was not too
worried because most of the articles said that 90% of patients have it for a
while and then it mysteriously goes away and never comes back for many people.
The part that scared me was that 5% of people die from it if it gets on a major
organ. I mean, how would you know if you had them on your organs? Other
than the nodules on my skin, I really don't have any major complaints. I have
occassional joint pain but nothing that I can't tolerate and minor stomach
problems from time to time. I can't really drink alcohol anymore, especially
wine,
because as soon as I take a sip of wine, it feels like my intestines are
twisting or like I have done about 1000 sit-ups. And sometimes I itch all over
my
body. I feel like my skin is crawling. And there were a few times when I
would dose off to sleep and then wake up a few minutes later, feeling like I
was shaking on the inside. It was wierd. That hasn't happened in a couple of
years. I was also diagosed with ovarian failure 3 years ago at the age of 36.
The reproductive endocrinologist said that it could be something autoimmune
and did an ANA but it was negative. Then, a few months later a
Rheumatologist did another ANA and some more testing for autoimmune and it was
all
negative. I had bloodwork done last week when they did the biopsy and the ANA
was
negative again. Isn't Sarcoidosis an autoimmune disease? Why is my bloodwork
always normal? So, I don't know if any of these things have anything to do with
Sarcoisosis, but that is what has been going on with me for the last 3 years.
I wonder if I just developed Sarcoidosis or if it has been lingering for a
while and just showed up in the lumps on my arms and legs? I have had chest
x-rays a few times over the past few years for various reasons, but nothing has
ever shown up on my lungs. I read that this disease gets mostly in the lungs.
Is this something that I have to look forward to? Because up to now, I
haven't felt like anything is wrong with my lungs. I have a cough right now,
but
my nose is also congested, so that can't really be a lung problem, can it? My
symptoms are relatively minor. So, is this how it starts our for everyone and
then it gets worse? Is it going to get worse? Will it go away and never
come back? What if it goes away for several years and then comes back only
worse? I just really don't know what to expect. Is there anything I can do to
make
it go away? Or at least not get any worse? And can these nodules just pop up
anywhere, anytime? Because it seems like some of mine just showed up one day!
Can anyone share their experience with me? Until I read the archives from
this group, I was feeling okay about this diagnosis. But, it seems that a lot
of people in this group have suffered for a long time. Does anyone think
theirs will go away and never come back? Or is this likely to be something that
I
will suffer with for the rest of my life? Is there a test they can do to tell
when you have a relapse? If it gets on a major organ, how will I know that?
What can I expect now that I have been diagnosed with this disease?
Any advice or knowledge, experiences, etc. would be greatly appreciated.
Kim

Corrina is looking and acting much better!!! They decided not to pull her line out until tomorrow, Monday. The pediatrician covering her told me that she has very limited access right now. Plus they did not find the OR time on Friday and Sat., he feels like that it was better to wait also because she is, as of today back on her regular feeding schedule!! No more TPN's and no more IV (except for bolus of Magnesim and her antifungal). So, he stated that the line can come out and she will not need another one put in place. They are going to keep her on the antifngal until the treatment is finished in about 6 days, as well as do another blood culture after the line is out (I am not sure of how soon after), and another echocardiogram to see if there was any' foliage' in her heart. There was none last week, so that means that the yeast is only in her line. So before she goes they are going to another echo to be sure that it looks the same as last weeks. This means that there is a
possibility of her coming home next week, all we need to do is be sure that her bodies chemicals are going to even out because right now her mag and potassium are low. But those are also meds that can be given at home and I can take her to the lab and have her blood drawn as needed to be sure that her levels are where they should be.

Of course, there is also the down side. Her oxygen levels have been all over the place, indicating that she is possibly shunting and mixed blood is flowing through her body. I have been trying to tell the doctors for the last several months that I feel her PH has gotten worse and that we need to consider raising her dose of viagra. I got the run around that we need to wait and see if the 'steroid burst' help her and if this helps or that helps her. Well she is now on increased steroids, increased diaretics and increased breathing treatments, but her sats are still dropping. They have done chest x-rays and suctioned her poor little nose! Still nothing is really making a difference, except when she is sleeping. She is dropping from the 90's to the 70's in a heart beat and then back up again. They try to tell me that the monitor has to be coralating, I have been there long enough to know the routine with the monitors by now! Her RT's both yesterday and this morning stated
that they think that her PH is worse also because her numbers are all over the place. They both sat and watched her for 30 minutes each and noticed that I did indeed know what I was talking about! So the RT this morning talked with pulm on call and the pulm came in and talked with me this morning. He agreed and said that we need to talk to the card tomorrow when they come and take her line out. I am relieved that they have finally listened to me. I hate running into this problem. I am also going to talk to them and have them talk to Dr. Moore the card at Vanderbilt. I am also seriously debating on just having Corrina transfered from here to Vandrbilt if possible. I will talk to her docs about that tom. as well. There is so much going on and I just want Nina to come home and better yet I want to head out to Vanderbilt now and start care for Nina. I am becoming increasingly frustrated with the care that she has here.

Oh, Jennifer, I talked with Marybeth over at Dr. Moore's office and she was very helpful! I have to admit that I bombarded her with questions that she could not answer. I feel badly about that. She is a nice person though. And she was very helpful. I may see you sooner than we expect. We shall see how things pan out tomorrow.

Take care everyone, and thank you so much for the prayers. I will continue to keep you updated! You are all in my prayers!

In Honor of Corrina

Betty that was a cute one thanks for the laughs
Betty Thomas <bbutterfly@...

THE THREE LITTLE PIGS
Three Little Pigs went out to dinner one night. The waiter comes and takes their drink order.
"I would like a Sprite," said the first little piggie.
"I would like a Coke," said the second little piggie.
"I want water, lots and lots of water," said the third little piggie.
The drinks are brought out and the waiter takes their orders for dinner.
"I want a nice big steak," said the first piggie.
"I would like the salad plate," said the second piggie.
"I want water, lots and lots of water," said the third little piggie.
The meals were brought out and a while later the waiter approached the table and asked if the piggies would like any dessert.
"I want a banana split," said the first piggie.
"I want a root beer float," said the second piggie.
"I want water, lots and lots of water," exclaimed the third little piggie.
"Pardon me for asking," said the waiter to the third little piggie, "but why have you only ordered water all evening?"
You're gonna hate me for this....
Hold on to your seat ........
The third piggie says...
"Well, somebody has to go 'Wee, wee, wee, all the way home!"

Betty
bbutterfly@...

To unsubscribe from this group, send an email to:

These are wonderful, Ray. Thanks for helping me start my day off with a laugh.

Happy Father's Day to you and all the father's out there. Hope it's a great one for you.

Hugs,
Betty
bbutterfly@...

Hello Chris,
I don't know what is causing Tara's neck pain and I wouldn't want to
take a guess, not even having looked at her. Plus, I am a nurse, and
not trained in diagnosis.
I can tell you a few things from my experience. The condition that
generally must be ruled out when there is a blood pressure difference
between arms is a narrowing of the aorta, called a coarctation.
Generally, one is born with that, but it can change over time. Children
that have coarctation of the aorta generally have diminished pulses in
their lower extremities, which appears to be what the doctor in the ER
was checking for, but Tara's pulses were normal. Plus, I am assuming
that Tara has had a cath or an echo sometime in the past and if she had
coarctation of the aorta, somebody would have noticed that by now. It
is not something that would be overlooked by a cardiologist. But I
don't think the sore neck would go along with that. I've seen a lot of
kids on the floor that I work on with coarctation of the aorta and I've
never had one complain of a sore neck.
I have had adult patients complain of a painful neck when they were
experiencing low blood supply to the heart, but I have not seen a child
complain of a sore neck for this reason. I am guessing that is why the
family doctor suggested an ECG, but that is just a guess.
Did you see a peds cardiologist in the ER or just a regular ER doctor?
Will the doctor or one of their nurses call you back in Australia if
you call with a question?
I think the ER doctor is probably right that it is not cardiac, but if
your family doctor sent you to the ER for an ECG and X-ray I think I
would also call him back and tell him that you did not get these things
in the ER, and tell him what the ER doctor said. I would also phone the
cardiology nurse, or have the family doctor call the cardiologist, just
to review it with him and see if they think there is a possibility it
could be cardiac. Once somebody raised the possibility that this might
be cardiac in origin, I would want someone who knows Tara's
medications and history to reassure me that it wasn't, because, as a
parent, once that question has been raised I would worry about it until
a cardiologist told me not to worry about it. But that is just me. I
worry a lot. It is part of my job to alert the doctors to anything that
might be going on, so I tend to report anything that might be of
concern. Then I let them tell me what I should worry about and what not
to worry about.
My husband, Bill, is the opposite. He tends to be the optimist and not
to worry about things. He thinks a lot of worry is a waste of time. So,
together we strike a pretty good balance. But Bill is also a mechanic
and not a nurse. If the cars don't work when he puts them back together
he just pulls them apart again. Its not so easy to do that with people.
It is possible that your cardiologist may be able to look back at the
results of tests and procedures he has already done and give you the
reassurance you need. But I see no harm in calling Tara's doctors and
letting them know your concerns.
Six hours is a pretty long time to spend at the doctors. Whatever is
causing Tara's neck pain, I hope it goes away, soon.
Jennifer

Hi Shahid and welcome to Sarcoidosis Support. I'm sorry if you have Sarcoidosis but I am glad you found us. This is a group of wonderful caring people. If you need support, understanding and knowledge, you have found it here. "Understanding", because we all have this disease and know what you are going through, "support" because we all need it and "knowledge" because we are all so willing to share what we know with one another.
Please post us and introduce yourself and tell us a little bit about what is going on with you. We're looking forward to getting to know you and welcome you into our "family". I think you will enjoy getting to know us too.

Betty Thomas - List Mom
bbutterfly@...

Betty
bbutterfly@...

Well even if you're not looking for love, and just a bit of fun thought I'd give
you all this tip. So you can stay away from all the BS fake profiles places.
This is what I've been using http://www.whereyougethookedup.info/fcvr . No joke,
I've messaged about 5 women close to me and already 3 have responded, and I am
already organising to meet up with one. Not bad for a guy who hasn't had a
date in a while, lol! :)

Hi everyone

I've been quiet recently on the list, been away a couple of times, also new school year starts tomorrow....everything hectic.

Yesterday (saturday, here in australia) spent 6 hours at Drs with Tara. She has been complaining of a sore neck.left side for about four days. first i thought she may have slept wrong and hurt it like that, but continued on for too long. I took her to family dr and he couldn' find any sore throat,ears etc. He said neck pain in a cardiac patient can be significant or it can be nothing, so he wrote a letter and said to go to ER for ECG and xray. At the ER they took her blood pressure which was 90/50 in right arm and 110/64 in left arm. When she saw the Dr he mentioned the BP difference can have something to do with the aorta, but her arm and leg pulse were normal , so ruled that out. After examining Tara he came to the conclusion that it was muscular and he DID NOT do an ECG or an x-ray. Sent us home and said to give her panadol. It's now 5pm sunday and she still has a sore neck.

Basically, I don't know if I should be worried or not. Has anyone had this problem or know what it might be? What about the BP, is that ok to have different readings? I don't know whether to go back to the family Dr and tell him what happened at the ER or phone the cardiology nurse where Tara attends appts?

Any advice appreciated....and Jennifer if you read this I would really appreciate your professional opinion....

best wishes

chris

mum to Tara

Hi Celeste

I am sorry you had to face such confrontation at the appt., but also understand you had the right to put your viewpoints across. I would and have done so myself. Even tho I hate confrontation and conflict of any sort, I think as long as it is done politely and diplomatically, all involved can come to some resolution.

In our state the hospitals have big signs up saying, "Zero tolerance policy to any abusive, aggressive, racism behaviour" fair enough on that, just as long as it applies both ends.Makes people choose their words and attitude carefully.

I hope Noel is feeling a little better or at least stable and also that you get some further answers at next visit.

best wishes

chris

mum to
Tara

Dear Betty:
Thanks for the prayers! I'm doing quite a bit better since the
extra prednisone kicked in. I'm hoping that I'll be able to cut
down on the pain meds now. It really is sort of a vicious circle.
Prednisone or pain pills, but at least I know that the prednisone
does help the inflammation.
Hope you have a good weekend!
Kathy

Dear Patrice,

My heart goes out to you and hurts for you. You and Nina have certainly gone through a lot with this hospitalization.

I hope what they are doing now corrects things.

Take care.

Pam (Becky's mom)

Just thought I should pass on my knowledge to all you guys (and gals) on here. I
know just like heaps of other men I am pretty shy when it comes to going up to
someone. I've tried a few different places (clubs, bars, etc) but never seem
to have too much luck. Anyway, a few weeks ago I joined up to
http://www.meetinghereyo.info/fmpm and I have to say I am already getting
excited. I was beginning to think I'd end up being alone for ever, but already
been talking to a few interested ladies on there. Anyway, if you're like me it
comes highly recommended!

LOL...Betty the thrird little piggy sound like me wee wee wee all the
time...
You and Ray and the Holmes make days full of smiles and laughs.
thank all.
becky
======================================================================

Hi Krs and welcome to Sarcoidosis Support. I'm sorry if you have Sarcoidosis but I am glad you found us. This is a group of wonderful caring people. If you need support, understanding and knowledge, you have found it here. "Understanding", because we all have this disease and know what you are going through, "support" because we all need it and "knowledge" because we are all so willing to share what we know with one another.
Please post us and introduce yourself and tell us a little bit about what is going on with you. We're looking forward to getting to know you and welcome you into our "family". I think you will enjoy getting to know us too.

Betty Thomas - List Mom
bbutterfly@...

THE THREE LITTLE PIGS
Three Little Pigs went out to dinner one night. The waiter comes and takes their drink order.
"I would like a Sprite," said the first little piggie.
"I would like a Coke," said the second little piggie.
"I want water, lots and lots of water," said the third little piggie.
The drinks are brought out and the waiter takes their orders for dinner.
"I want a nice big steak," said the first piggie.
"I would like the salad plate," said the second piggie.
"I want water, lots and lots of water," said the third little piggie.
The meals were brought out and a while later the waiter approached the table and asked if the piggies would like any dessert.
"I want a banana split," said the first piggie.
"I want a root beer float," said the second piggie.
"I want water, lots and lots of water," exclaimed the third little piggie.
"Pardon me for asking," said the waiter to the third little piggie, "but why have you only ordered water all evening?"
You're gonna hate me for this....
Hold on to your seat ........
The third piggie says...
"Well, somebody has to go 'Wee, wee, wee, all the way home!"

Betty
bbutterfly@...

Hi Everyone,

Well, Corrina's culture after staying negative all week, was positive for the same infection that popped up a week ago. They drew another blood culture yesterday and that is the one that was positive for yeast. This is the third time in three weeks. This means that they are going to remove her Broviac and within 24 hours either place in a new one or place in another central line. So by tonight they will have it pulled, they just need to fit her in between surgeries.

My husband stayed the night with her and called me this morning as soon as he heard. I will be heading up there later on this afternoon. The surgery will not take place until atleast 3pm. She should still be home in about 8-10 days.

I also spoke with my friend and I am putting up a prayer request. My friends niece suffers from rhuematoid arthritis, she is only about 6 years old. They have her on a pain medication that was causing her to loose her hair. But she has still been complianing that she hurts. They had her admitted and did a deep bone marrow study. They think that she may have Lukemia. Thank you for the prayers.

Patrice

In Honor of Corrina

Patrice,
I hate to hear that the yeast is still present. Hope all goes well with
the new line placement.
I will keep you and your friend's niece in my prayers. I hope that the
bone marrow aspiration yields some good news for your friend, but
please let your friend know that childhood leukemia is not a death
sentence, in the majority of cases it is a treatable and curable
disease.
God bless Corrina. She has had so many ups and downs. I hope she is
able to come home soon.
Jennifer

HeHeHe!

Betty
bbutterfly@...

Hi Kathy, I'm so sorry to hear what you have been going through. Must have
been awful scary for you besides painful. Sounds like you are coping well
despite it. I hope the prednisone will make it feel better. In this case,
I don't think you had a choice. I am sorry you had to go back up on it
though. Take care of yourself and keep us posted. I will keep you in my
prayers Kathy.
Love and hugs,
Betty
bbutterfly@...

Hi Kathy-

So sorry to hear about how rough it's been lately for you. My heart goes out to you!!!

In reading your letter I got to smiling about all the abbreviations and how its almost like we talk it codes nowadays. (I saw my PCP about the CRP from the ER when I felt like SH...................well....... Smiley emoticon you know what I mean.)

I hope you get to feelin' better. I know how those bad days can really get you down and blue. You're in our prayers.

Hope you have a great weekend and feelin' better.

Ray & Liz

=======================================================

Yeah I know, I never really thought this stuff would work either, but honestly I
stand totally corrected. This place http://www.thehotchatrooms.info/fiqr is
actually very awesome. I hooked mycam up and within no time at all I was talking
to a few great ladies over it. Anyway, I recommend it to everyone here!

[INLINE]
Blonde Joke of the Year

[INLINE]

Patrice,
I don't mind you responding, I was at work yesterday. While Bill and I
were pleased with the care we received from Vanderbilt, it is also
where I work, so I am not sure I can evaluate the same way as a parent
who might be coming into the hospital without knowing the staff. All
the people who treated us knew they would have to run into me in the
halls sooner or later, and I had more access to my son's cardiologist
than the average parent might have had.
Melissa, New York has a center for treating pediatric pulmonary
hypertension that is a leader in research in the pediatric field. The
doctors at Vanderbilt offered to transfer our son there when he was
first diagnosed, but he was very sick, in the PICU with RSV, and I
didn't think the travel would be in the best interests of his health,
even though they offered to transfer us by medical flight. The doctors
at Vandy always left the door open for us to get a second opinion, and
we did wind up having someone from New York review Joey's records and
tests to make suggestions, but we did not choose to travel to New York.
We had older children and we wanted to keep our family close together
and we didn't want to expose Joey to a lot of unnecessary stress. We
also did not want to pursue lung transplantation as an option for our
son, but these are all real personal decisions, and our decisions
probably would have been different if Joey's pulmonary hypertension
had not been so advanced when he was diagnosed. I have family in both
New York and Denver, both of which have centers which are noted for the
treatment of pediatric PH, so the expense of travel wasn't an issue.
Everybody's situation is different, so you have to do what you feel is
best for your family and for Bailey. I am happy to give anyone
information on Vanderbilt if that is what they request. But I also like
hearing about what treatments the kids are getting at other places, so
I really do not want everyone on this list to start coming to
Vanderbilt. I also get long winded on this list and I am not sure I
want all my patients knowing about my personal life. This is the one
arena where I feel I can be just a parent.
As a parent and a professional, I can vouch for one thing that I think
is a great advantage. My pediatrician and cardiologist already had a
working relationship before Joey came along, since Vanderbilt is a
referral hospital for our area of Tennessee. They already felt
comfortable calling each other and conferring with each other and had a
lot of respect for each other's opinions. This was a great advantage.
They alternated seeing Joey so that Joey would get closer followup.
There were times when Joey's cardiologist wanted to see Joey but was
too booked to see him. Then he would tell me to have the pediatrician
to see him because he knew the pediatrician would call him if he
noticed anything concerning. If your pediatrician or cardiologist
already has a working relationship with the clinic in New York or
wherever they wish to send you that is something that you might want to
consider as an advantage in deciding on a referral, because it
facilitates communication among providers.
Whatever you decide, keep us informed and let us know how it goes. We
are happy to have you and Bailey in our group.
Jennifer

Hello, my new friends!
I've sure had a rough couple of days! Had another prednisone wean
on Sunday and by Tuesday I was in the ER with terrible chest pains.
Thought I was having a heart attack. They said that my inflammation
factor was 12 times normal and that it was more than likely the
sarcoidosis causing the inflammation. My heart was OK, which was a
big relief, but I've been in terrible pain these last few days.
Having to take pain pills to manage and then feeling that awful
feeling you get from the pain pills. Went in to see my PCP for
followup on the ER visit today and he took one look at the CRP
levels and raised my prednisone back to where I started! Sheesh!
Well, I'm hoping that it will help enough so that the pain will ease
up. It's really been rough!
Thanks for listening! I hope that you are all having a good, pain
free week!
Kathy in Seattle area

With the funding being cut for so many human service programs,
including medicare, and talk of limiting soc sec benefits, this
seems very relevant, and at the least, informative... it
does make me wonder.
SOCIAL SECURITY
(This is worth reading. It is short and to the point.)
Perhaps we are asking the wrong questions during election years.
Our Senators and Congressmen/women do not pay into Social Security
and, of course, they do not collect from it.
You see, Social Security benefits were not suitable for persons of
their rare elevation in society. They felt they should have a
special plan for themselves. So, many years ago they voted in their
own benefit plan.
In more recent years, no congressperson has felt the need to change
it. After all, it is a great plan.
For all practical purposes their plan works like this:
When they retire, they continue to draw the same pay until they die.
Except it may increase from time to time for cost of living
adjustments..
For example, Senator Byrd and Congressman White and their wives may
expect to draw $7,800,000.00 (that's Seven Million, Eight-Hundred
Thousand Dollars), with their wives drawing $275,000.00 during the
last years of their lives.
This is calculated on an average life span for each of those two
Dignitaries.
Younger Dignitaries who retire at an early age, will receive much
more during the rest of their lives.
Their cost for this excellent plan is $0.00. NADA....ZILCH....
This little perk they voted for themselves is free to them. You and
I pick up the tab for this plan. The funds for this fine retirement
plan come directly from the General Funds;
"OUR TAX DOLLARS AT WORK"!
From our own Social Security Plan, which you and I pay (or have
paid) into, -every payday until we retire (which amount is matched
by our employer)-we can expect to get an average of $1,000 per month
after retirement.
Or, in other words, we would have to collect our average of $1,000
monthly benefits for 68 years and one (1) month to equal Senator
Bill Bradley's benefits!
Social Security could be very good if only one small change were
made.
That change would be to:
Jerk the Golden Fleece Retirement Plan from under the Senators and
Congressmen. Put them into the Social Security plan with the rest of
us then sit back and see how fast they would fix it.
If enough people receive this, maybe a seed of awareness will be
planted and maybe good changes will evolve.
How many people CAN you send this to?
Better yet.....
How many people WILL you send ! this to ?

Hi Dustin, I'm really sorry about what you are having to go through now and
do understand as I, and others, have made this same journey to find out,
once and for all, what is wrong with us. I think for many of us the final
answer has come through a biopsy. I'm glad to hear that your doctors are
not rushing you into steroids and are putting their effort into finding the
right diagnosis.
My thoughts and prayers are with you Dustin and I pray you may get the
answers you need to give you peace of mind and a good starting point to
treat your problems.
Hugs,
Betty
bbutterfly@...

Celeste,
I don't know what to say about all of this. Sounds like a pretty
emotional encounter with the card. Maybe both of you got some issues
out that needed to be aired. I am glad that Ron was there to support
you.
Please keep us updated on Noel and feel free to vent. That is what we
are all here for. You and Noel are always in my thoughts and prayers.
Jennifer

Hi Dustin, I hope you don't have to lose your node. I went through that myself. I also go through the depression, anxiety, panic attacks and what ever else this disease causes. I hope things go good for ya. My prayers are with you.

Mary
Dustin Graham <dgraham@...

Hi all!
Went to the doctor today to get the results of my bloodwork. Turns out I've
got sarcoidosis according to one test. Liver, urine, and whatever else he
tested turned up clear or in the normal range; except for one that measured
inflammation? He said it was a low abnormal score and was probably
allergies. During our conversation the doctor asked if I had fevers or
night sweats. I had to answer yes (I spot checked my temp one day after
reading a thread here), and now I'll probably loose a node for more testing.
For now we're going to skip immediate treatment with steroids, I suffer from
chronic depression and he thought those meds may be contra-indicated for
depression. Instead I'll see a therapist about pulling out an entire node
and get another chest x-ray in 10 weeks to monitor the progress of the
disease. If it's worsened, we'll revisit the med situation. Until then,
I'll keep on keepin' on.
Thinking of you all,
D.
---
Dustin Graham, CMT
Duluth, GA
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so we went to the cards appointment yesterday and the minute we got in there...ron, Noel and myself..

the card started with me...about how he does not want me to be so demanding and blah blah..

so I stood right up to him and told him how i had to be demanding in some instances...

the conversation went on and on...

he didn't like the fact that I went over his head and complained I don't think and he told me he didn't want me to do that again.

oh yes....he told me first that if I keep it up that eventually no one in that office will speak to me...and I said what do you mean and then he started with the demanding crap. and i explained everything ..fact by bloody fact..and he didn't believe me and he said what the nurse had told him and i told him that she was a liar...things were getting heated in there and he knows i won't lie or back down...

Thank God ...Ron was in there because at first the card was saying they didn't get the insurance paper...and we have the confirmation papers..and he didn't know Ron took the day off and hand carried the papers over there on another day because the nurse said she lost them...

anyway....after Ron told him the whole level of tension in the room dropped and he knew I was telliing the truth....because Ron had called also and no one returned any of his calls either.

he said ....Noels condition alone is very unique...there are not many people with medical conditions like her in the world...and then he held up her hand and said see this....(very cyanotic fingers which we are used to)

when you walk into an office and doctors see this they are very intimidated. they are intimidated of Noels condition and are afraid of doing something wrong. combine that with the fact that I have been doing this a very long time and know a very lot about it esp. my daughters condition ....and they also do not like me telling them.

example...when the card finally admitted that the insurance form was there ...he said the nurse didn't know how to do it...and I said...

well.. if she didn't have time to call the insurance co or someone why didn't she call me...I would have told her how to fill it out...and he said...

thats it....people don't want you to tell them how to do things or etc....even though I know and they don't and i could help them....it makes them feel intimidated so they just don't do it at all or don't call back...just like the damm school.....you learn the laws and then use them to make the cse's hands shake...and then they hate you for it...but it is the law.....they just don't want you to learn and use it.

but if they don't actually do the thing...like offer to help me get a script or fill out a form.......how do i get them to do it.........no answer

so many things came out

we still have no answer on who would cover for him in case of emergency or who should have written the script in case of emergency....

we are going back in 3 months and will ask him more questions then

he should have known that i would not have just backed down and took what he said no matter what the consequences. he was ticked that I would do whatever it took to do what I needed to for my child and to keep her on that insurance....their office screwed up and they thought they could use me for a scape goat...but the cards nurse ...used different things and mixed them up and didn't tell all the truths...like ron had hand carried the paper over also....and she told him on the phone she would be right there to fill it out. she had also said i called a bunch of times....on wed. thurs and fri when she was out and i was ticked because she didn't call me back...

i said ...haha....i didn't call on those days ....and they can check the phone log because i hadn't.

he was angry about that stuff by the time we left but he wasn't totally angry with me.....or us because he understood how it really was.

anyway...he said Noel is doing good. he didn't know what the spell was but said we would probably have plenty of bumps in the road with Noels health and we just have to make it through.

he said he thought the ventavis would have been good but whatever....

then he said they are working on an inhaled form of remodulin and that would probably be good for Noel. that is something to look forward too.

they can't do anything for Noel that isn't already being done....he said her 02 does nothing for her it is the rest that helps..

yes her sats are low but he isn't worried about it due to her condition(s).....another problem...with someone else with very low sats....people would worry...but he doesn't worry with Noel and he knows i don't but when people come in like the resp therapist and is concerned...he does not want that either....well...I can't help it...I have to use an 02 company and they have written him reports before ...he needs to tell them...not me...

a lot went on there and I cannot possibly go into it all but I wanted you to see how things can get out of control very quickly. and who do they believe well obviously not me but we knew enough to have Ron call about things to. and I also asked the card have you ever heard about me doing anything like this before or have you ever seen me do anything like this before.......and he did say no...I am always in very good control...my point exactly...

he definitely knew...but i cannot see the relationship continuing because i cannot get along with the nurse

he said we live in a small rural area where i know more about ph and stuff than most people do including the nurses and doctors we deal with in the care of my daughter.....

damm it...I don't want them to make mistakes......thats a reason why it got to this point...

he can handle it but there is no one else...this is why the hematologist/oncologist said those things because she doesn't know anything about any of this....

so no DRN....did I mention that...

I do better flying by the seat of my pants anyway...LOL

and everything depends on the situation Noel is in and all and I feel much better with that decision.

so things ....BIT....at the cards office...

so I guess we will have to wait three months to find out anything....he thinks we do a fantastic job with Noels care and he told us over and over....

oh yes and i did tell him that the reg physician does not feel comfortable treating noel and that she wanted to see hard copies of everything ..and maybe look at the chart and he said no...

he sends them a letter ...that is what they get.

haha...I was really angry yesterday for awhile..but i knew in my head what was up ...thats why i was so happy ron took off from work and came with me...so i couldn't be railroaded by people saying untruths about what i said or did.

and I already knew i couldn't win .....so I might as well be ready to face the music and tell what actually happened. I just wish he could have given us some answers right then instead of when we bring Noel back in 3 months. but he didn't have them and it didn't make me feel good. I guess they figured that nothing would happen when he was gone but funny...that is when it always does....

love celeste

Hi all!
Went to the doctor today to get the results of my bloodwork. Turns out I've
got sarcoidosis according to one test. Liver, urine, and whatever else he
tested turned up clear or in the normal range; except for one that measured
inflammation? He said it was a low abnormal score and was probably
allergies. During our conversation the doctor asked if I had fevers or
night sweats. I had to answer yes (I spot checked my temp one day after
reading a thread here), and now I'll probably loose a node for more testing.
For now we're going to skip immediate treatment with steroids, I suffer from
chronic depression and he thought those meds may be contra-indicated for
depression. Instead I'll see a therapist about pulling out an entire node
and get another chest x-ray in 10 weeks to monitor the progress of the
disease. If it's worsened, we'll revisit the med situation. Until then,
I'll keep on keepin' on.
Thinking of you all,
D.
---
Dustin Graham, CMT
Duluth, GA

[INLINE]

Dear Kay & Tom,

Wishing you a wonderful and blessed Wedding Anniversary! Hoping you have a TERRIFIC day of celebrating your love for each other!!

God bless,

Mary Ann, OR

Letter Style by Rocklin Heidi

This is a very informative letter, Joanie. I have always felt that sarc may be environmental, however, doctors have said no..................that's why I'd like to see a doctor or medical expert examine and weigh all the evidence and connections and write a book about it.

Ray & Liz
========================================================

Here's wishing that you both have a great day for your anniversary. This is your day, so just enjoy yourself and remember all the wonderful things that brought you two together in the first place. And we pray that God blesses you richly today, as well as thru/out the rest of the year.

[INLINE]

Love Ya, Ray & Liz

''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''

Melissa,

I know this was addressed to Jennifer, but she is the one who also gave me all of the information on Vanderbilt that has helped us to decide to move out there and know that Nina will be in good hands. Yes it was Dr.Moore that she mentioned. We have all ready scheduled an appointment with him (I'm talking about the cardiologist) and are looking forward to meeting him. Since we will be living in TN come March, maybe we can plan a day when you are in town or something and we can get together and meet? And the girls can play together? I think that would be great for both Bailey and Nina. I think they are only about 6-8 months apart? Nina is now 25 months old. Isn't Bailey about 18 months old? Correct me if I am wrong. Plus I know a couple that live in Charlotte, and I know that I need to see them. They had a daughter my age, she was my best friend, and she got really sick and passed away at age 10. It's been awhile since I have spoken with them. I better go, I need to get my
older daughter Lilly off to school. Talk to you later and take care.

Patrice
Melissa Brewer <brewerbus@...

Hi Jennifer! I was just letting you know that my husband and I have discussed where we felt like Bailey should be treated (at a PH clinic) and we have narrowed it down to Vanderbilt and Maryland. I am not sure of the clinic that our cardio was referring to when he said Maryland (any ideas?) but these two are within driving distance for us. If you could let me know of any information on Vanderbilt that you have, it would be greatly appreciated. ie, doctor names (I think you told me Dr. Moore?) Another issue, we would have to travel over the mountains into Tenn, is that safe for Bailey, the altitude issue? Just wondering. We are going to leave it in our cardio's hands as to the final decision of where we should go... he has referred children before and we will probably trust his judgement in the final say. Like I said, he didn't mention Vanderbilt at Bailey's appointment but I thought I would mention it to him. If I had definate contact people (I do have the number for ped
cardio that you gave me) that he could contact, he may want to at least talk with them.

Sorry for the long windedness.... decisions, they are driving me crazy right now...

Thanks for listening and the advice!

~~:o) melissa (o:~~

Hi Jennifer! I was just letting you know that my husband and I have discussed where we felt like Bailey should be treated (at a PH clinic) and we have narrowed it down to Vanderbilt and Maryland. I am not sure of the clinic that our cardio was referring to when he said Maryland (any ideas?) but these two are within driving distance for us. If you could let me know of any information on Vanderbilt that you have, it would be greatly appreciated. ie, doctor names (I think you told me Dr. Moore?) Another issue, we would have to travel over the mountains into Tenn, is that safe for Bailey, the altitude issue? Just wondering. We are going to leave it in our cardio's hands as to the final decision of where we should go... he has referred children before and we will probably trust his judgement in the final say. Like I said, he didn't mention Vanderbilt at Bailey's appointment but I thought I would mention it to him. If I had definate contact people (I do have the number for ped
cardio that you gave me) that he could contact, he may want to at least talk with them.

Sorry for the long windedness.... decisions, they are driving me crazy right now...

Thanks for listening and the advice!

~~:o) melissa (o:~~

[LINK]

In a message dated 6/10/2003 3:45:15 AM Central Standard Time, becky_sunlight1956@... writes:

I was raised in arkansas and have lived here all but 6 months of my
live here.
Becky, do you mind if I ask what part of Arkansas you grew up in? (If I've already asked you this question, just disregard this...LOL...I'm getting this strange feeling of deja-vu as I type.)
I was also born in Arkansas. I was born in the town of Clarksville, in the northwest part of the state. I lived there until I was 10. My parents had divorced when I was 9, and my dad remarried to my stepmom just before my 10th birthday. That summer after I turned 10 I went to live with my dad and my new stepmom in the mountains of northwest Arkansas in a town called Oark. I went to school at Oark School from 5th grade to 10th grade. My mom had moved out of Arkansas and to Tulsa, Oklahoma. When I was half-way through 10th grade, I went to live with her. I finished out my highschool years in Tulsa, and by the time I graduated I had already met my future husband, so didn't want to leave him to go back to Arkansas. Although I missed it so much! I've lived in Oklahoma for 19 years now, but Arkansas is still "home" to me.
My hubby and I lived in Tulsa the first 7 years we were together, but in 1993 we moved to Sperry, Oklahoma, which is a little rural town just on the outskirts of Tulsa, to the northwest. We have lived here for almost 10 years now.
Anyway, the reason I'm asking is because my mom and I (and my stepmom) all three have auto-immune diseases. We all grew up and have spent a big majority of our lives in Johnson County, Arkansas. My stepmom and my mom are both in their lower 50's now. I am 35. My stepmom was the first to be diagnoses. When she was in her 30's she collapsed one day at work, and her right side just went paralyzed and she could not move it. She was diagnosed with Multiple Sclerosis. She has suffered with it for about 20 years now, but she does pretty good. She's not in a wheel chair or anything. She gets around fine and drives herself places and stuff. But, several times a year she will have an "attack" and she will end up in the hospital. She'll lose the feeling in her right side and have to work until it comes back again. She suffers from horrible migraine headaches, too.
My mom was diagnosed with Scleroderma (another auto-immune disease) when she was in her late 40's. Her skin hardens up on her, and she's been told that she has the systemic kind, in which it will eventually travel to her internal organs and they will start hardening up on her, too. But, she took prednisone for awhile, then she stopped taking it, and for now she seems to be in remission.
Then, I was diagnosed with Sarcoidosis this year!
All three of us can not seem to handle being out in the hot sun. It effects each of us differently. It makes me break out in an itchy rash. It doesn't do this to my mom or stepmom, but my mom says she gets violently ill if she goes out in the hot sun too long, and she will be in bed for a day or two afterward, with horrible headaches. My stepmom just says when it's hot out and she is hot, she gets really down and ends up in bed for a few days. She seems to have her worst "attacks" of MS in the hot summer months.
We just think it's odd that all three of us grew up in the same area, drinking the same water, breathing the same air, etc. And, now we all three have an auto-immune disorder. In my family we kinda believe that it must have something to do with the environment we live in.
My dad said when he was a kid, back in the 50's and 60's, he remembers that planes were always flying over the mountains near where he lived, dropping pesticides and chemicals into the Ozark National Forest. He figures that these pesticides could have settled into the mountain streams and made their way down to the town of Clarksville at the foot of the mountain where we lived, and we all could have ingested some of it.
It's just a theory, but we just all seem to want to find out what caused us to have what we have. We just want answers, I guess.
So, I was just wondering if you grew up anywhere near that same area.
Joanie

Ray that sounds like the same couple I saw in a mall in Palm Springs a few years ago. HeHeHe.

You know, you without your long hair would be like Howard without his snow white beard. Wouldn't be normal. I think you should stay the way you are. I know neither of you want to change it anyway

I went to my PCP (reg. doctor) today and she gave me antibiotics for bladder infection. She managed to find me 2 blood pressure meds that are generic and won't cost an arm and a leg. One is one that worked well for me when on it in brand name form, so generic will cost a lot less. The otlher is a generic also that she felt would also help my BP. She is going to recommend me to a dermatologist, and agrees that the lesion I have is probably skin cancer. I'll be glad to have that taken care of. I just assumed Sarcoidosis but I should have known better and not let it go so long (since last fall), as I have had skin cancer on my nose twice before. The rash on my arms will be looked at then too. Have had it steadily since April 1st. The lung doctor didn't think either were sarc. related. I feel better since I got the first dose of antibiotics. It really works fast on infection. Cipro.

Please try to stay out of the polluted air so it won't set you back any further. Your breathing is too fragile to take any risks. We have to have our Ray as healthy as possible. Couldn't do without all your wonderful posts, both jokes and your loving support for all of us.

Thankyou Ray.

Love to you and Liz.

Betty

Betty
bbutterfly@...

Patrice,
I am so glad that you have some good news.
I think God is there for us even if we do feel out of touch with Him,
sometimes.
Jennifer

Hey Everyone,

I think that I just spooked myself when I talked to my aunt. I have decided that my husband and I do need to sit down and discuss what we were to do. I also spoke with Nina's nurse, and she told me that the infectious disease specialist was in earlier this morning and that they put in her chart that Nina can stay on the medication that she is on because her calcium has gone just by taking it out of her TPN and that she just needs to finish up the treatments she is currently on. The last one she was put on is in day 4 of it's 14 day treatment. So that means that as long as nothing else comes up, she only needs to be there about another 10 days and that is much better than 28 days. Also, her numbers that showed there was decrease in her kidney function is not alarmingly high. Just a slight raise to cause the doctors to keep an extra out for. Thank you so much to everyone for the prayers and thoughts. Just hearing the good news from her nurse is an answer to me that God
does hear our prayers and that he does answer them. Thank you, if it were not for all of you I fear that I might loose touch with God. Thank you so much for the support and kindness.

Patrice

Hi Barb, I'm so glad Jacob is well. I bet he is too. Poor little boy, he
went through a lot. Hope everything goes well for the whole family.
Love,
Betty
bbutterfly@...

Thanks for sending me your dates for the calendar. I hope you will be able to do well when you go back to work. Sorry you have to increase the prednisone. That ointment sounds like a "solid gold miracle". At least it should b for that price. Thank heaven for your insurance. Take care of yourself.
Love and hugs to you,
Betty
bbutterfly@...

Ray, thanks, I felt wonderful immediately.
Betty
bbutterfly@...

Think you for your kind letter, Mary. God has helped me see a lot of things with this sarc, that I probably would have overlooked if I was well.

One thing I remember awhile back was Betty saying in one of her emails:

"If you woke up breathing, congratulations! You have another chance."

That's the way I wake up every morning now.

I learn so much from everyone on here, and seein' everyone face their disease and not let it destroy them is inspiring to me. Your love and care for other people is seen in every single one of your emails, even if its only a line or two. You are dear to my heart.

Sending my love and prayers out to you daily.

Red heart emoticon

Ray & Liz

PS: I saved the original message you sent so Liz could see it but after reading it she deleted it, so I decided I'd just do a new one. God Bless You Everyday of your life, Mary.

Hi Patrice....

I am so sorry that things with Nina are not looking so good. And I realize too that the I'm sorries don't make things that much better. But please know that all the prayers will help her in some way or another. I really believe in prayer. Through everyone's prayers, we have been led to the right doctors... or at least that's my belief. So please believe in prayer, not only from you but from all around you and all that have read your post. You know we are all here for you, to love and support you through all of this. Even though we are not there personally, we do send you a lot of hugs and well wishes to encourage you to be brave and strong for your daughter. I hope and pray that things go better for you all today and the days to come. I hope Nina is able to tolerate her treatments and is soon on the mend.

Please know that we are thinking and praying for you and your whole family in your time of stress, decision making, everything you are going through....

~~:o) melissa (o:~~

[LINK]

Hey Everyone,

I am feeling rather down in the dumps right now. I just spoke with Nina's doc over the phone, then after that I spoke with my aunt who is a supervising nurse at her local hospital. I am feeling pretty scared and sad. Apparently her blood culture grew another fungus on the 11th...they started her on a new antifungal...as with any antifungals you can have kidney failure and Dr.Smoot noticed that her kidney function has gone down a bit in the last few days. They are taking her off of her currentl antifungal and putting her on something less toxic...this treatment takes 28 days. It is only available through IV and not in any other form...meaning she has to stay in the hospital for atleast 28 days. Dr.Smoot also stated that it is 'clear cut', if the blood culture that was taken from her line on Sat. grows anything than they are pulling out the Broviac, no if's and's or but's! Only problem is she has very little access and they are unable to do a pic line or another central
line due to the fact that she developed that blood clot within a few days of having the femeral central line in. Another side effect from the antifungals is that her calcium has increased significantly which can lead to cardiac problems (which she thankfully has not shown any signs of yet), if her calcium levels do not go down tonight after the changes that have been made then they will have to put her on another medication that will lower her calcium for her. When I was discussing this with my aunt she brought me to reality...if Nina's kidneys continue to fail, then we need to know wether or not we want her to have to go on dialysis. It just went on from there, what if her heart just decides it's tired, are we going to put in place a DNR, or are we going to do everything we can to help her live? It is a matter, to me, of how much do we want our baby to have to suffer? How much do we think she can tolerate? Do we try everything, again? Or do we let her go home to
our heavenly Father? How will the decision we make effect the kids? Maybe this is going a little over board, but my aunt thought that we need to know what we would do in those 'what if' situations. Especially since we have been in those 'what if' situations and those 'rare cases' situations. It was really hard the first time. I have a lot of praying to do, a lot of thinking and a lot of discussing with my husband and with her doctors. I am sorry to just lay it all out. I have no way to stop the fears and no way to stop the tears now. My aunt says that we are not giving up on Nina just because we discuss these things and have a plan, but that we are preparing ourselves so that if the time comes then we don't have to try and make those decisions in a rash moment. Does anyone have any words of encouragement or wisdom? They would be greatly appreciated. Sometimes I feel so lost. I am confused right now and only want to do what is best for Nina and her brother and sister. I am
sorry! I am an overflowing well tonight. Thank you for your prayers and support that you have given me so far. I do think of all of you as family. May God Bless you all!!!!

Patrice

Celeste,
I am glad things are falling into place for you and I hope that the
appointment goes well. You have my thoughts and prayers.
Jennifer

Hello again Celeste,
I have to agree with you about not taking your hands off the power of
attorney forms when you show up at the e.r. When I was a new nurse, I
thought the original forms were supposed to go in the patient's medical
record, not just a copy. So when people showed up carrying one I put it
in the chart. Then one day one of my charts got audited and they found
the form in the chart. They had me give the original form back to the
patient's family and just keep a copy for the chart. By that time, I
think I had sent two or three of those forms down to medical records
because I didn't know that the hospital wasn't supposed to keep the
original form.
That was many years ago but I think it is good advice to hang onto the
original. You might wind up with a nurse like me, who is not sure just
what she is supposed to be doing with those forms.
Much love and hope all goes well tomorrow,
Jennifer

Hello everyone,

I did hear from the cards nurse earlier this afternoon. she said they would double book and the card would see Noel tommorrow at 3 pm and also speak to me/us at the same time.

that went well....she kept trying to tell me that she didn't get any of the messages that I had called about and I know she did because it wasn't me that called....I just told her whatever...

so I am kind of nervous about tommorrow and Noel says she is not going but at least i might get an answer of what if anything is going on.

Noel seems like she is improving a bit which is making me happy also.

I will have to call the adult primary care doctors office and see what they think....it has been hard switching from the pede who knew us to the adult doc....and the nurses never know what I mean or what ph is or anything...

and all of this wouldn't have happened if the hematology /oncology doctor wouldn't have called and hightened my fear of the unknown.

she made statements that I haven't heard of before...well....not like i don't know where we are headed but I didn't think of anything like this happening in the near future and I feel we deserve to hear what the card has to say on this subject. and he may totally disagree with what she said to us because he has totally disagreed with other docs before and he is usually right.

anyway...

I have a hard time speaking to the adult doctor because Noel is 22 years now and we do not have gaurdianship. it is another long story. I did get the forms from the local social worker at the local hopspital. I was surprised that the health form was almost nothing but the poa you have to have notarized.

and another word of advice...if any of you have to go to the er with a power of attorney or health forms...do not take your hands off them...they disappear very quickly and this is why we are doing these again. last time the lawyer wrote out the poa.

I have to run....but I wanted you to know. and i did call the regular doctors office also...she was also out of town. each doc Noel sees was gone for the holiday.

and I was told that the regular doc cannot prescribe codine or fill out any insurance forms....because I would have had them do this also. in fact...friday i was told by another nurse in the cards office that cards are not allowed to prescribe codine either but Noels card does because he takes care of Noel.

and how did I get here...I had to earlier speak to the practice manager...I don't know if I had mentioned that today but I did get a call back and he told me if this happens again..not to call back just to call him directly and he will take care of it...

love celeste

I was born in Clarksville, Arkansas and have lived all my life in either Arkansas or Oklahoma. So I have never left the south central part of the United states.
Joanie
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Celeste,
I agree with Melissa. I know you have had some problems with Noel's
primary care doctor but it may be time to work these issues out or find
another primary care doc you can work with.
I would be beside myself if I thought something significant was going
on with my child and no one would contact me. But specialists do have a
tendency to respond more quickly to calls from fellow doctors than from
parents. Also, specialists have a tendency to focus only on the
problems that are in their field, whereas a good primary care doctor
can help you tie the findings of different specialists together and
tend to view their patients more as a whole person than as a particular
set of organs.
Even at Vanderbilt, if I called as a parent I would speak to a
cardiology fellow, whereas if my pediatrician called he was put through
directly to Joey's doctor, if he was in house, or to the cardiologist
on call if he was not. That is the way the system works. Several times
I found that the fellows would forget to inform Joey's card that I had
called.
Joey's card worked in the pediatric cardiac cath lab doing
interventional caths (still does). The answer to contacting him was
proposed by his nurse, who suggested I email him about events.
Apparently, the man was an email addict who always checked his email
between cases. If Joey had a scary event that resolved that I just
wanted to report, I emailed a description to him, and he emailed back
his recommendations or just thanked me for keeping him informed. These
emails were printed and wound up in Joey's chart, so we could discuss
what was going on in our next visit. And he generally responded to my
emails that same day.
But it was Joey's pediatrician that responded in an emergency, and he
told me NEVER to email him anything that I needed a prompt response to,
to always call him. So it was always Joey's primary doctor I went to
first. And he was great about calling me back. Many of the emails I
sent to Joey's card were just to inform him of the issues I had raised
with Joey's primary doctor and how we had resolved them.
But, you know, the peds cardiologists have to be trained as
pediatricians first before they become cardiologists. And I have always
thought that people who work with children are special. The adult
cardiologists I used to work with in the community hospital I worked in
before I came to Vanderbilt were jerks. Not that they didn't know
cardiology. but one in particular could have used a personality
transplant.
I think you are facing some of the problems that are common to people
who have adult aged disabled children. Because they are adults, the ped
doctors don't want to treat them anymore. And the adult doctors want to
treat them like they have the same decision making capabilities as
adults without disabilities, and they neglect the rest of the family
when treating them.
When I worked at the small community hospital I saw a lot of the
pediatricians' patients who had disabilities grow up and transition to
adult doctors, and, because I also worked on the adult floors, I saw
these children later admitted as adults, and got feedback from the
parents from which adult doctors they liked and which ones they
disliked.
What I found out was that the mother's preferred the family practice
doctors over internists. Family practice doctors, who see both children
and adults, seemed to have less difficulties dealing with mothers and
keeping mothers informed, and seemed to have more respect for the
mother's opinions. Even some respected and well liked interns didn't
seem to hit it off with these moms. One of them told me, "he wants to
do things his way, and I want to do things my way." You know, if you
have raised a high medical needs child to adulthood you have a pretty
good idea of what works.
I hope you can build a relationship with a primary care doctor in your
community that you feel you can trust, because then you could leave
contacting the card to him or her. Not all doctors use email, so I
don't know if that would work in your situation.
I hope your day improves. I have a test this week so I need to start
studying, but I have a whole lot of dirty laundry that needs attention
first.
Lots of love,
Jennifer

Wow that is neat Mary Ann thanks for sharing.
Eric & Mary Ann Holman <holman@...

[INLINE]
----- If THIS ISN'T THE WORLDS' GREATEST
CLOCK--TELL ME WHAT IS !
(CLICK ON THE BLUE LINE BELOW)
World's neatest clock:
http://www.suite101.com/files/mysites/AskAlice/Clock.htm

Hello everyone..

I just wanted to update you....

I am probably going to get into some type of trouble with all of this but I am still bugged by the fact that the cards office never called. the respritory woman...brach manager at that...

told me this am that she faxed the results of the 02 check right over on wednesday and followed it up with a phone call and spoke right to a nurse and they said they would get back with me right away about all of this that day....wednesday...same day accredo nurse called them. I spoke to someone on Friday but when I spoke to her this am...she said I didn't speak to her on Friday.....this was very strange.

so when I found that even the respr. person had even called and spoke because she felt this could be something serious...and they would call that day..............I was really angry and I called and spoke to the practice manager..

he was coridal but not to happy with my call....I could tell...

he said that the nurse for the card will call me this afternoon before she leaves for the day and she will have all the answers that I need.

I doubt it but maybe calling the practice manager will get them to call me back.

I just thought I would give you an update.....

I want some answers also....about everything ..but I know she will just lie or try to blame someone else....I hate this...

much love celeste

Hi Barb I am so glad Jacob is doing better. I will keep my prayers going for both of you. May god bless
Barb <cherkota41@...

Hi All,
Barb in Vancouver, WA, here. As usual, I'm a day or so late reading
the posts and decided to put in my 2 cents worth on this one. I was
born and raised in Wilmington, Delaware. I have lived in Parris
Island, SC; Quantico, VA; Oahu, HI (these last ones were while in was
in the USMC); Illinois (about 1/2 mile from oil refineries); Wyoming
and now Washington State. I am 61 yrs young and can remember
symptoms all the way back to when I was 33 yrs old. It took me until
2001 to get the diagnosis of sarcoidosis and this was through a
dermatologist at the VA. My dad worked for a refinery so I was
exposed to all the pollutants expelled from the refineries (3 - I
think) that were in a place called Marcus Hook, PA. I also was in a
home with parents who smoked - mom constantly smoking cigarettes and
dad with his "Saturday" cigar.
So, there were enough pollutants in my life to cause some of my
symptoms but no doctor has ever made the association.
BTW, I would like to thank all of you for your prayers for Jacob. He
is doing much better now and is off the oxygen. He goes on at
bedtime when he needs it - especially if he has been playing extra
hard.
Sure hope all of you are doing as well as you can with this disease
and I pray for all of you every day/night. May God bless all of you.
Barb
To unsubscribe from this group, send an email to:

Dear celeste,

I am so sorry to hear that you are having such problems. Please know that you and Noel are in my thoughts... and I wish I could just call that card's office myself. Does Noel have a primary doctor? Reason for asking, when I really need to get in touch with Bailey's card, I usually use her pediatrician. He seems to have a little more influence in getting some results from the other doctor. He usually does her medicine refills, and he can sometimes even talk to the card and get her medicine increased if we think that she needs them...

I will just throwing that out there for you, hoping it might help... keep me posted!

~~:o) melissa (o:~~

[LINK]

Hi Becky I am so glad your back. We missed you. I hope you can keep up with us. We really did miss ya. May god bless

Mary
becky <becky_sunlight1956@...

HI EVERYONE,
welcome new family members, you have joined a wonderful family here.
as you have already learned bye now.
as for me I have been back in bed for the past week with upper back
strain. i did this getting dressed. and had to go on a stronger
muscle relaxer they had to change it three times before the found
something that would relief the spams in my back. just to breath was
a job itself. and their was no comfortable way to be.
the spams have been geeting worse since i have not taken my steriod
injection since the friday the grandkids moved in. and i have findly
gotten of the topamax for my back due to my eyes. and my back now is
giving me hell again.
but i don't really feel the upper part is muscle i believe it is
disk related.
and now the dr. that is treading my back is leaving town the end of
this month and their want be anyone to go to till sept. unless i go
out of town. just hope my fAMILY DR. stays around he is so
understanding and willing to learn all he can about the sarcoide.and
he goes the extra mile with everyone he treats.
got to hop of the computer now and rest my back.
love and prayers to all
becky_sunlight1956
To unsubscribe from this group, send an email to:

thanks ray,
I sure will try to send you some sunshine today. I don't think I
will need it today or the rest of the week. supppose to rain here the
rest of the week...
It feels really great to be back.Just hope that I can stay up with
the group now!
becky_sunlight1956
======================================================================

If you ever get to thinkin' no one cares and you're really down in the dumps.......go to this site..............and you'll feel a lot better..........

http://www.cse.unsw.edu.au/~geoffo/humour/flattery.html

Love, Ray (& Liz)

Barb-

It's so good hearing from you also. Glad to hear that Jacob is doin' so much better.

Man, you've been all over this great nation, haven't 'cha? I keep hoping somewhere soon something will click and doctors will figure out a connection between all of us sarcodians (who was it that gave us that 'alien' name about a year back??? [INLINE] ).

I didn't mention that when I sent my email, but both my parents smoked also. Fortunately about 8 years ago my Mother gave them up, but Dad smoked right up until he passed on. (Something to think about).

Glad to hear you from you, Barb, and you are in our prayers also daily. So is Jacob. He's a little miracle.

Red heart emoticon Ray (& Liz)
+++++++++++++++++++++++++++

I am up have been up for over an hour and I have already been stressing about the call from the cards office on friday.

I don't know if i mentioned it but no one ever mentioned anything about what happened to Noel to the card...

and then the secretary who called was giving me this bs line where....the nurse is too busy...

and the card is too busy now for this stuff and they have a really hard time getting any messages to him or anything I guess.

this is making me sick....how can a card be too busy for a patient...

I know the woman i spoke to was trying to make me feel more at ease but she only made me more upset.

I am used to the no call backs etc....but too call and say that the nurse and card are too busy...and they did feel this could have been something serious but no one has mentioned it to the card because he is too busy....maybe they will have a chance this week.....

I am going to have to do something about this today even if i just call and speak to her about it again. she is office staff but at least calls.

I didn't get anywhere with the accredo nurse calling...she called on wed and i heard back on friday that they want to tell the card but he is too busy and the accredo nurse did tell the cards nurse but then she went out for several days...does anyone think I am going to far here....I did tell about what happened to Noel....now she has been fairly good...not as good as before but better than she was....but she is still having times when she does not feel well and getting very cyanotic....like all over grey???

oh yes i am also mad as a wet hen because the resp therapist sent a report over...this was the second one due to Noels low sats ...one was before Christmas.

the office person said they don't know what could have happened to this report either....and the one sent before...no one knows what happened to that one and Noels sats were low 60's then and I didn't hear anything either...

is this how things go when the doc thinks that your family member is too far gone to do anything further for....

I remember when my mom was dying of cancer....doctors stuck around...and when my dad was going down from heart problems....doctors were still available...

I just can't understand why they would be too busy to treat Noel.....

and I am so angry. I don't know how to settle this and for Noel to switch to another spec we would have to move. I am going to start going through stuff to get ready for this but I don't know what to do in the meantime. I think I may call the pede card and ask him if he would be able to see Noel until other arrangements are made. but the guy she is seeing now...knows about her problems..but this is difficult.

well....someone could have at least told the card and then if he thought it wasn't anything the secretary could have called me...I don't think that is too much to ask.

I have to get over this and move on but am having a difficult time...if I say it to Ron again he will get angry because he does not like to deal with this stuff. damm....

if even accredo couldn't help me.....I have to get racking the old brain and figure out a plan...I have also posted on some lists and try to make contact with anyone who uses this practice...but of course...friendly as the people are in New England...not one person answered my post...

thanks for letting me vent...love celeste

BECKY !!!!!

It's so great to hear from you. Been wonderin' how you've been doin'. Our sunlight is back!!! YEAH!!!!!

Sorry you're still not feelin' great. My lungs keep stayin' congested also, but I think it has a lot to do with either the humidity here or from all the rain we've gotten. In May it rained 22 days out of 31, and so far in the last 10 days, 5 has been rain and storms. When its not raining it's hot and humid in the low 80s. I get a lot of bad headaches from mold spores and with all this rain my head is about to split everyday. But like Carol says I'll make it and laugh at life. Everytime I hear that song 'I'm a Survivor' by Reba McIntire I think of everyone on here. That in spite of our aches and pains, our torments and frustrations - we're all a survivor.

Have been prayin' for you daily, Becky. Now that you're back....sunlight......maybe some of this rain will go away. Smiley emoticon

You take care.

Ray (& Liz)
=================================

[INLINE]

A farmer's wife went into a coma at home, and he summoned the doctor.

"She's gone," said the doc after examining the woman. "I'm very sorry. I'll call the funeral home for you."

The morticians carried the body down the porch steps and started to round the corner of the house into the driveway when the lead bearer suddenly lurched to avoid a holy bush, lost his balance, and dropped his end of the stretcher.

The jolt brought the woman back to consciousness. In a week, she'd made a full recovery and was back at the farm.

Several years later she again went into a coma. This time, the doctor sadly assured her husband she was unquestionably dead.

The undertakers were summoned. As the stretcher bearers inched down the steps and headed for the driveway with the corpse, the farmer cautioned, "Hey! Watch out for that holly bush."

(Ray & Liz)

PS: Thank you Mary Ann for a lot of these icons. They add so much.

Oops!

I just noticed a typo in my original post. Of course the conference is 2006, not 2005.

Laurie Jeter, PHA Parent Coordinator

forgt to mention that i too have GERD, IBS, ALLERGIES, A HAD WHAT
THEY SAID WAS A VIRUS BRONCHITIS WHEN IN THE NINTH GRADE THAT TOOK
THEM ALMOST 3 WEEKS TO FIGURE WHAT WAS WRONG.
my granny said it was just someone with the whooping cough. I can
still remember that feeling of my chest walls caving in and losing my
breath several times day and night. and that it scared one of my
lungs and it has showen up on x-rays since that first dx'd of the
virus bronchitist back then........HMMMMMMMMMM
and that was back over 30++ yrs ago..
becky_sunlight1956
======================================================================

HI EVERYONE,
welcome new family members, you have joined a wonderful family here.
as you have already learned bye now.
as for me I have been back in bed for the past week with upper back
strain. i did this getting dressed. and had to go on a stronger
muscle relaxer they had to change it three times before the found
something that would relief the spams in my back. just to breath was
a job itself. and their was no comfortable way to be.
the spams have been geeting worse since i have not taken my steriod
injection since the friday the grandkids moved in. and i have findly
gotten of the topamax for my back due to my eyes. and my back now is
giving me hell again.
but i don't really feel the upper part is muscle i believe it is
disk related.
and now the dr. that is treading my back is leaving town the end of
this month and their want be anyone to go to till sept. unless i go
out of town. just hope my fAMILY DR. stays around he is so
understanding and willing to learn all he can about the sarcoide.and
he goes the extra mile with everyone he treats.
got to hop of the computer now and rest my back.
love and prayers to all
becky_sunlight1956

Pam,

I am so glad to hear that they all made it back safe and sound. I am also very happy to hear that your mother is more herself. That must have been so scary for all of you!! I will continue my prayers that things will go smoothly with your parents insurance and everything else that is included. Take care and God Bless.

Patrice
Pam Adams <pcadams_2000@...

Hello everyone,

I just wanted to thank you all for praying for my parents, my husband and girls. John got home with the girls tonight about 11:30 p.m. He had taken my parents to their house which is about 30 minutes from our house in a different part of Houston. I talked with them a couple of times by cell phone while they were in route today. My mom sounded much more like herself. Her voice sounded stronger and she sounded pretty alert and knowing what was going on.

My husband said they both seemed to be pretty clear about what was going on. My dad was, of course, still a bit wobbly, as he was the one who got most of the injuries. John said it seemed to make them feel more at home during the trip that the girls were there to tell funny stories and talk about what is going on with them.

I feel much better that they will be o.k. in time. They have a lot of things to take care of - get a copy of the accident report, get a rental car, process the insurance claim, etc., but I'll check on them every day for awhile and see if they need help.

Thank you all so much for caring and praying.

Pam (Becky's mom)

hello everyone,
I was raised in arkansas and have lived here all but 6 months of my
live here. and that was in hilton head island, s.c.
i was a nusring assistance for 14+ years, and now for the past 5
yrs. have work in a factory around alot of chemicals and the flock
from the materials(rubber parts-- the sealants that go on automoblies
windows and doors.) used is really bad. i breath this stuff all the
time. and my health in the past 5 yrs. since being there has really
declined.
I know that they say that my sarcoidosis is better and nonactive
right now (april's dr.visit). but i can tell that my chest is getting
congested again. will just wait and see how it goes for now.
love and prayers to all
becky_sunlight1956