Just got my masters in Science and didnt even have to turn up to class...
how good is that? Just phoned these fellows 1-801 697 0461 and they got me
fully
accredited at an overseas uni in less than a month! Very happy right now.
Hi all,
Just wanted to ask you to keep me in prayer the remainder of this week starting tomorrow and probably the next month or two. I start my CLINICAL tomorrow!! :-0 ! I'm like a cat on a hot tin roof right now. My instructor has calmed me down a bit. BUT. . .I just want to do really well. Pray that I can at least push my wheelchair at 5:30 in the morning! UGH!! :-( Just kidding. But I don't want to make any mistakes that could harm a person, you know?
I know I was a good nurse before and can be again, but it will definitely be different from a wheelchair and being 10 years out of practice. So, if you could pray for peace and assurance, I would really thank you.
Love & God bless,
Mary Ann, OR
Hi Joanie, it will be interesting to see how this continues. Have you had your calcium blood level checked and if so was it elevated. I wonder if these things (allergy to sun and calcium blood level) are related.
Hugs,
Betty
bbutterfly@...
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That's so cute Becky. Thankyou. How are you feeling and how's the ankle. I hope your husband is doing ok. Keep us posted on both of you. Have you heard from your son yet since he left for the military. I am praying for all of you Becky.
Hugs,
Betty
bbutterfly@...
Hi Mary Ann:
Thanks for sharing the information regarding Micalcin - it may be an option for me. With ESRD, Fosomax is not an option. Right now we are working on getting my calcium levels done (it is up because of PhosLo) and we are trying to get my Sarcoid under control. I have been feeling pretty horrible lately so the Osteo has taken a back seat but thanks for the information.
Diane
Hi Eda-
I live in Walnut Creek / Pleasant Hill area. If you are interested, I'd love to meet you. Maybe we could meet half way at a coffee house in Berkeley?
I'm 33, female and single (though have adopted a boyfriend and his dog).
I also wanted to mention that I work full time (try to put in 40 hours) as a landscape designer (not licensed so it's against california law to call myself an architect) designing front yard developments, downtown renovations, creek restoration, and libraries, sports park etc. Very fun!
Love Louise
THis thing is amazing, just graduated without even turning up a single day. Now
fully qualified in a BA and looking to apply for a raise! I'll keep you guys
posted, but if any of u interested in getting a BA or something as well
without having to actually go through all the leg work i highly
recommend these
ppl 1-801-697-0461
Great idea Sooey!
I am a 37 year old female caucasian. I was born in New York. I moved to
Puerto Rico when I was 15. Moved to Boston when I was 17 to attend college
and stayed there until 2001. Moved to San Francisco, where I currently
reside, on September 6th 2001.
I was diagnosed with sarc on August 12, 2003 after an abnormal chest x-ray
was done. I had been short of breath for about 3 weeks and my asthma
medication wasn't helping. Its in my lungs only. I suspect I've had sarcoid
for some time-possibly as a child but I can't be sure. I've always caught
colds easily and have had them for longer periods of time than most. I also
have allergy induced asthma.
No history of sarcoid in the family although my brother has experienced
shortness of breath all his life (on and off-more noticeably when he has a
cold-just like me) but his chest x-rays are normal. He's going to get
another checkup and let his doctor know that he has a sibling with sarcoid
so they know what to look for. My father, now deceased had TB as a child
(back in the 1920's). There's no other history of autoimmune disease in my
family.
I am single, no children but I have two cats: Felix and America-they're my
babies! I work full-time as a server at a 4 star hotel, attend school
part-time (I'm studying journalism and photography) and I still free-lance
as a sound engineer for local bands (been doing this for about 20 years).
I don't know anybody with this disease except you guys:)
Wishing you all a pain-free day and easy breathing-love, eda
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Hi Sarc Gang!
Thank you to all who responded to my question about our age, gender,
race, etc. It's interesting to see who we are and how we have come to
this place. Thanks.
In my reading about Sarcoid I have found some very interseting
facts/information. One of them, the most common age of first
diagnosis of Sarcoid, young adult, age 20 - 40 years of age. For me,
I was thinking that to be given this diagnosis at age 53, I was on the
older side, and I am, but not out of the ball park...or should that be
sarc park. I have also read, years ago, it was thought that sarc was
caused by the bodies reaction to an allergin produced by pine trees,
there seems to be more cases of sarc in the U.S. found in the south
east...pine country. That theory has fallen from favor. The highest
number of confirmed cases of sarc are found in Northern Europe. In
the U.S., Sarcoidosis is most previlant in people of color. In the
U.S., among caucasion women, only 30,000 - 32,000 cases of sarc are
diagnosed each year. I have no idea what any of this means, it's
interesting, I'm still reading.
Thanks again for responding.
My best to all of you,
Sooey
Bigger is always better!, http://hurryheredontmissout.com/shal
This I wrote Just for the two of you. Enjoy
A Lighthouse can with stand time and storms.
It's light never growing dim.
Our lives are full of ups and downs small and large.
But as I stand here I hope that your love is.
As strong as a lighthouse before and after the storm.
And may the light in your hearts, never grow dim.
And if one should become lost, may you both look
and find that everlasting love is still there.
Waiting to be taken and shared.
May the fires in your hearts for each other be such a glow.
That no lighthouse could shine as bright as it does.
becky
THOMAS JEFFERSON !!! Wow, Joanie, that is impressive and interesting.
Wow................I love the pictures also. You could write a book like Alex Haley did with "Roots". I've always wanted to do that, but with my luck the only people that would be interested in it would be "family" haha Smiley emoticon
I've only got about 5 pictures of family members and only 1 from the 1800s, the rest I got from tracing birth certificates and family members who had information written down in old family Bibles. Yours is extremely impressive.
Thank you again for sharing all this information with us, Joanie. I, for one, have really enjoyed this. Was a history NUT in school and still love history and political science....but I think the best history is what's in our own family backgrounds. Don't you?
You also said -
So, my brother and his wife are 5th cousins to each other. And, what's worse is, they live in Arkansas, so they get teased unmercifully about how everyone in Arkansas always marries their cousin! LOL But, if the truth be known, I bet half of the married people in the world today, if they were able to trace their families back far enough, would find that they connect SOMEWHERE down the line. We are probably all related to our spouses somewhere down the road. LOL
That's fascinating also.......bein' a good conservative like me..........however, in tracing Liz's roots we found that a woman (last name Poluter) works for Rush Limbaugh on his radio show, and we've written trying to find some information on her, but have never heard from her back. Also for awhile there was a writer for the soap program "Days of Our Lives" whose last name was Poluter (Liz's maiden name), but again, we wrote her and never heard from her either. Guess they're just busy people.
Again, Joanie, thank you for your family history.
Ray & Liz
================================================================
Chris and Jennifer,
We did have Trey's PH "managed" by a Transplant Doctor
for 6 years. Going to a PH center has been the best
thing we ever did,
1)PH centers can participate in studies and have
greater access to compasionate use drugs. Also PH
doctors talk to each other and see each other at PH
Medical Meetings.
2)Our PH Center doctor is accessable 24/7. Also our PH
doctor is there for us for Flu,Colds and filling teeth
questions.
3)Our PH doctor has the last say on any drug Trey
takes. Our local doc always asks "What would Dr. Ivy
Do?" So we together call Dr. Ivy's team.
4) Our PH Doc works with the Transplant team to decide
when we are activated. Trey has been on the Transplant
list for 10 years. Trey bounces between acitve and
inactive. The doctors talk and send reports to decide
when. Transplants have there own set of problems so
they look carefully at when Trey will be better post
TX then his quality of life now.
5) Trey likes seeing other PH kids at the clinics this
can be such a lonely disease. IT is good to know you
are one of many Hero Kids.
Good luck with your decision.
Sunnie and Trey Scott
Your history is so fascinating, Joanie. You've really did a lot of research and study to find out all this info.
You also said..................
So, my brother and his wife are 5th cousins to each other. And, what's worse is, they live in Arkansas, so they get teased unmercifully about how everyone in Arkansas always marries their cousin! LOL But, if the truth be known, I bet half of the married people in the world today, if they were able to trace their families back far enough, would find that they connect SOMEWHERE down the line. We are probably all related to our spouses somewhere down the road. LOL
I agree with you there 100 %, Joanie, cause we all go back to Adam and Eve. Right? heehee!!! Smiley emoticon
Bein' from the South I know all about the "imbreeders" jokes, but they never bother me. I guess since havin' Sarcoid, I'm happy just bein' alive and don't let those things bother me (as you can tell from my silly Redneck Wednesday jokes).
Am really enjoying your family history, Joanie. Thanks so much for sharing.
Ray & Liz
==================================================================
In a message dated 9/2/2003 10:07:30 PM Central Standard Time, edapeach@... writes:
Whats your
take on the vitamin D and sunlight issue? Do they affect/aggravate your
symptoms?
Hi Eda,
About 8 years ago I was at my dad's house visiting, and my sisters and I were sitting on the porch with shorts on, and we all propped our legs up on the porch rail to get some sun on our legs. It was about April, I think, so we hadn't had much chance to get out in the sun yet that year, and we were all pale as ghosts. LOL Anyway, we sat there about 30 minutes or so talking, and tanning our legs. Later we went into the house and sat down, and I looked down and noticed that my legs were all covered in this raised red rash. And, it was itching like crazy, like poison ivy or something. Everyone was gathered around me wondering what in the world was wrong with me. Then, I pulled up the edge of my shorts and there was a perfect line between the rash and my normal skin. Only the parts of my skin that had been exposed to the sunlight had a rash on it, and immediately where my shorts started, the rash stopped, so I had this perfect line between red, raised rashy skin, and
normal white pale skin. Everyone was saying "How weird! It's as if you are allergic to the sun or something."
This was the first time it had ever happened to me. And, right about this same time is when I woke up in the middle of the night one night and felt like a huge heavy brick was sitting on my chest and I couldn't breath! I thought I was developing asthma like my dad and paternal grandma have/had. But, I was told at that time that I was having panic attacks.
Anyway, this skin rash thing from being out in the sun just kept getting worse, and for 7 or 8 summers in a row, the same thing would happen to me if I was out in the sun too long. Only the parts of my skin that were exposed to the sun would turn into a rash. I'd get it on my face, my neck, my arms, my legs...anywhere that wasn't covered by clothing. During the wintertime I was fine, but as soon as spring rolled around, and the sun started warming things up, I would start with the rashes again.
My mom took me aside one day and said she was worried because she had heard that people with Lupus sometimes do this, and she thought I should go be tested. I had never really thought it could be something that serious, but after my mom said that, it got me scared. I talked to my doctor about it, and he just kept saying it was just allergies, and probably wasn't even the sun causing it, but some other agent from being outdoors, like pollen or mold. So, I went with his word and didn't think it was that big a deal.
But, my breathing problems kept getting worse, and I began breaking out in hives from other things than the sun. Just taking medications would do it to me. There were about 4 different medications that I'd taken all my life, that suddenly were causing me to break out every time I took them. I took Advil one day, which I had ALWAYS taken, and I broke out in a rash about an hour later. I took liquid grape Dimetapp one day, something I've taken since I was a child, and about an hour later I broke out in a rash. And, I took Benadryl one day and about an hour later there was that darn rash again. Plus, three different prescribed allergy medications that my doctor gave me all did the same thing (Claritin, Allegra & Zyrtec).
Finally I was diagnosed with Sarcoidosis and was told that sensitivity to the sun was sometimes one of the symptoms of it. So, the shortness of breath, the hives and rashes and the horrible allergies were all symptoms of this one disease and everything started coming together and making sense to me.
But, the weird thing is....they did not treat me for the sun allergies or anything, but they have suddenly stopped. I was diagnosed back in April, and the only medication they put me on was the Advair inhaler for my shortness of breath. And, ever since I started using it I have not broken out in the rash even once. I've started taking the medications again that were causing me to break out and everything is fine now. And, all summer long I was out in the sun several times and never once did I break out. This is the first summer in 8 years that I've been rash free!
The only thing I can figure is that my body was concentrating so hard on my shortness of breath issue, that it didn't have the time or energy to try and fight off other things. But, now that the Advair is controlling my breathing, my immune system is able to go fight other things, like the sun allergy problem. It just seems like everything has gotten better since I went on the Advair, not just my breathing problems.
Joanie
READ ALL THE WAY TO THE END - THERE'S A TRICK TO IT.
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Hi Chris,
My response to you may be colored by my recent hospital and doctor experiences with my daughter, Becky. However, I do not feel that just because he is a doctor of "lots of knowledge about pulmonary hypertension" that he would be as qualified as a center with 60 kids on their PH program. For one thing, children are not just small grownups as some adult hospital seems to think, and secondly, developments in pulmonary hypertension change a lot and you need someone who is really up to the minute on what is going on. I believe if I were you that I would continue to push to have her recorded reviewed at the centre with 60 kids on their PH program.
With pulmonary hypertension, doctor's egos are pretty low on my list as far as importance. While my daughter is seem by Houston, Texas doctors where she live for local care, we travel to Denver, Colorado to see Dr. Ivy at least twice a year to make sure Becky gets the best PH care. And even when she is in Texas Childrens Hospital if I am uncomfortable with the course of treatment, either Dr. Mallory, the TCH lung doctor will call Dr. Ivy and consult with him or I will call Dr. Ivy and ask him to consult with Dr. Mallory to make sure everything that can be done for her PH is being done.
I realize you live in Australia and medical care is different there, but I wouldn't give up on having her seen by the PH Children's Centre or at least having her records reviewed by them. Unfortunately, in this wretched disease, a lot of times the mother has to be the advocate for the best care, even though you are already burdened with other things and with worry.
Best wishes. My heart goes out to you.
Pam (mom to Becky - 17 - severe PH, congenital heart disease; scoliosis; reactive airway disease; etc.)
keith and chris masters <kncmasters@...
Hi everyone
Tara had her checkups yesterday. Her resp. dr said she is looking better than she's ever seen her, her lungs sounded good. Her lung function tests showed the same as January - half as good as they should be. I supposed that means 50% of volume capacity??
Next cardiologist, her echo indicated her pressure is 75ish, previously 78-80. A tiny improvement, but heart function good considering the pressure. She has been having good days symptom wise so I actually thought pressure might have been lower. He would like to see Tara on Tracleer in combination with viagra, but that decision is up to the transplant Dr.
Cardiologist did not like my plan to have her records viewed at another hospital. A much larger centre with 60 kids on their PH program. He told me that the transplant Dr Tara's sees is world class with PH patients. Even though he is an adult dr, he has lots of knowledge for pulmonary hypertension. In fact he recently had Dr Robyn Barst visiting over here. The cardio told me that the lung obstruction is causing Tara's PH, although as I told him I am getting conflicting information from the respiratory team and cardiology. How can I understand and come to terms with all this when lung Drs blame cardiac and cardiologist Dr blames lungs.
Next we visited the transplant Dr. He talked about the MRI and lung obstructon, although the airway is not adequately visible in the MRI and he does not have the bronchoscopy report. He said it is possible that the obstruction will be less severe as Tara gets older and her airway gets bigger. The airway will not be as easily compressed/squashed as it will be bigger and tougher. Adults with this problem can have a stent put in the airway to stop the artery from squashing it but not possible in children. There is a significant risk of death with the operation. While a patient is well , it would not be contemplated at all. I asked him about having Tara's records sent to another hospital (this gal does not give up..LOL) He said they would not do anything different in another hospital, but he will call the Dr and discuss Tara. Of course I have no way of knowing if he will or not. I told him I am very afraid of her getting another serious lung infection which will take
her out.
He doesn't see the need for Tara to take tracleer at this stage as her heart is functioning well. I have heard that sometimes it can be left too late to try tracleer, flolan etc. What is the opinion of others??? Should one wait or should PH be hit with everything to combat progression. Maybe you guys can give me feedback or ask your PH Drs. about that.
Sorry this has dragged out so long, as you can probably guess I'm still very uptight and feeling like I have questions that don't seem to have clear cut answers. But then, don't we all want answers that fit what we want to hear.
best wishes
chris
mum to Tara who is turning 8 on 17 march....which is in 1 and a half hours time here in Australia.
yes there is a pool party at our house for 15 children 8 years and younger.....i am definately going crazy. Have to go and download Tara's favourite songs onto her MP3 player she is getting as one of her presents.
Thank you so very much, Carol. I can even hear you extending the last word...mOOOOOOORRRRRRRRRReeeee! Smiley emoticon
We Red heart emoticon You-
Ray & Liz
========================================================
Hi Eda, my lung doctor told me the sudden rise in my ACE level could mean
that the sarc. is active. I know it can spread from one organ to another
because mine began in my lungs then went to my skin and my hilar lymph nodes
over a several year period.
My breathing problem was because of asthma and yes the advair helped a lot.
My biggest symptom that took me from doctor to doctor to find a cause was
"coughing". Incessant coughing. Not shortness of breath although I had
that with each asthma attack. I do have some pain in my right lung but the
doctor considers that low priority right now but says maybe my CT Scan will
tell us more.
The doctor checks my blood for my blood calcium level with each blood test.
My blood calcium went much too high which the doctor said had to come down
because you can't llive with a high calcium blood level (that was my 2nd
bout with prednisone, but it did help bring that level down and it was low
dose, short term that time) plus he took me off all dairy products and told
me to stay out of the sun. He explained that the sarc causes the body to
use the vitamin
d more efficiently causing the calcium level in the blood to go up. I
haven't had any dairy products in a year and I wear a hat when I'm outside
and long sleeves. It has worked because my blood calcium level has stayed
down. He has had me stop vitamin supplements altogether.
The way I understand, the granuloma activity in the lung causes the
scarring.
I'm sure Mary Ann or Carol can give us all a more accurate and detailed
explanation but these things have happened to me and that is what I have
learned.
Eda, I had never heard the terminology "1st stage or 2nd stage" etc. until
newer members joined us and mentioned it. I don't really know what that
means in regard to Sarcoidosis.
I hope some of my experiences will be helpful to you in understanding this
disease. It sure is a complicated one. Yes I will keep you all posted on
my test results and hope everyone will do so too so we might all learn more.
My love to you and "all".
Betty
Hi everyone
Tara had her checkups yesterday. Her resp. dr said she is looking better than she's ever seen her, her lungs sounded good. Her lung function tests showed the same as January - half as good as they should be. I supposed that means 50% of volume capacity??
Next cardiologist, her echo indicated her pressure is 75ish, previously 78-80. A tiny improvement, but heart function good considering the pressure. She has been having good days symptom wise so I actually thought pressure might have been lower. He would like to see Tara on Tracleer in combination with viagra, but that decision is up to the transplant Dr.
Cardiologist did not like my plan to have her records viewed at another hospital. A much larger centre with 60 kids on their PH program. He told me that the transplant Dr Tara's sees is world class with PH patients. Even though he is an adult dr, he has lots of knowledge for pulmonary hypertension. In fact he recently had Dr Robyn Barst visiting over here. The cardio told me that the lung obstruction is causing Tara's PH, although as I told him I am getting conflicting information from the respiratory team and cardiology. How can I understand and come to terms with all this when lung Drs blame cardiac and cardiologist Dr blames lungs.
Next we visited the transplant Dr. He talked about the MRI and lung obstructon, although the airway is not adequately visible in the MRI and he does not have the bronchoscopy report. He said it is possible that the obstruction will be less severe as Tara gets older and her airway gets bigger. The airway will not be as easily compressed/squashed as it will be bigger and tougher. Adults with this problem can have a stent put in the airway to stop the artery from squashing it but not possible in children. There is a significant risk of death with the operation. While a patient is well , it would not be contemplated at all. I asked him about having Tara's records sent to another hospital (this gal does not give up..LOL) He said they would not do anything different in another hospital, but he will call the Dr and discuss Tara. Of course I have no way of knowing if he will or not. I told him I am very afraid of her getting another serious lung infection which will take
her out.
He doesn't see the need for Tara to take tracleer at this stage as her heart is functioning well. I have heard that sometimes it can be left too late to try tracleer, flolan etc. What is the opinion of others??? Should one wait or should PH be hit with everything to combat progression. Maybe you guys can give me feedback or ask your PH Drs. about that.
Sorry this has dragged out so long, as you can probably guess I'm still very uptight and feeling like I have questions that don't seem to have clear cut answers. But then, don't we all want answers that fit what we want to hear.
best wishes
chris
mum to Tara who is turning 8 on 17 march....which is in 1 and a half hours time here in Australia.
yes there is a pool party at our house for 15 children 8 years and younger.....i am definately going crazy. Have to go and download Tara's favourite songs onto her MP3 player she is getting as one of her presents.
Hi everyone,
I was wondering if anyone knows if there is a relationship between coughing up blood and a person's PH getting worse? The reason I am asking is that Becky has had PH since she was 6 and she is now 17. She has had lots of respiratory infections before - a few with coughing as well, and yet this has never happened.
If anyone knows the answer to this, I would really like to know the answer.
Thanks.
Pam (mom to Becky - 17 - severe PH, congenital heart disease, etc.; Johnny - 15 - healthy; and Laura - 12 - healthy)
Louise,
I wasn't at all offended. I think Ray said it best about being spiritually
correct. Thats all that counts. love, eda
Hi Betty and Mary Ann,
Thanks for responding to my question re: the ACE test. My level was 115
which is unusually high. Could this indicate that I have sarcoid in other
areas of my body?
Betty, I sometimes am short of breath when resting but it usually is brought
on by some form of exercise like walking. If I'm stressed out about
something it makes me feel worse. I work at a hotel restaurant that has
indoor and outdoor seating and the kitchen is clear across the room so I do
quite a bit of walking at work every day. I also take public transportation
or walk everywhere I go: school, to run errands, my many dr.s appts. , etc.
Have you had to use any inhaled meds like Advair or Flovent? Were they
helpful to you? Please keep me posted on your results-I'll send extra good
thoughts your way:)
Questions for the whole group:
Gail mentioned in her email that the sarcoid had spread to her spleen. Can
sarcoid spread to other organs?
I checked out sarcinfo.com and was reading about the effects of vitamin D
and sunlight on people with sarcoidosis. Shortly before I was diagnosed I
was taking calcium supplements. My TCM doctor eliminated dairy and more
recently wheat from my diet. Are any of you on special diets? Whats your
take on the vitamin D and sunlight issue? Do they affect/aggravate your
symptoms?
What does it mean when they say Sarcoidosis is not a progressive disease?
Does this mean it doesnąt get worse? Why do patients progress from one x-ray
stage to the next? Is this because the disease goes untreated?
What actually causes the lung to scar?
Sorry for all the questions. The more I learn about this disease the less
frightening it becomes. Thanks for your support. I'm keeping you all in my
prayers-love, eda
Wise words for all. As anyone who has been to my home can attest to, is my home is definitely lived in! :-)
God bless,
Mary Ann, OR
S [INLINE]
Dusting
"A house becomes a home when you can write "I love you" on the
furniture."
I can't tell you how many countless hours that I have spent CLEANING! I
used to spend at least 8 hours every weekend making sure things were
just
perfect -"in case someone came over". Then I realized one day that no
one
came over; they were all out living life and having fun!
Now, when people visit, I find no need to explain the "condition" of my
home. They are more interested in hearing about the things I've been
doing while I was away living life and having fun. If you haven't
figured
this out yet, please heed this advice.
Life is short. Enjoy it! Dust if you must, but wouldn't it be better to
paint a picture or write a letter, bake a cake or plant a seed, ponder
the difference between want and need?
Dust if you must, but there's not much time, with rivers to swim and
mountains to climb, music to hear and books to read, friends to cherish
and life to lead.
Dust if you must, but the world's out there with the sun in your eyes,
the wind in your hair, a flutter of snow, a shower of rain. This day
will
not come around again.
Dust if you must, but bear in mind, old age will come and it's not kind.
And when you go - and go you must - you, yourself will make more dust!
Share this with all the wonderful women in your life! I JUST DID.
It's not what you gather, but what you scatter that tells what kind of
life you have lived.
[INLINE]
Beautiful roses Mary Ann. I love roses too and have a large rose garden. Becky Sunlight loves them also. We all need beauty in our lives and what is more beautiful than a rose. Thankyou for sending us the bouquet.
Love,
Betty
bbutterfly@...
Hi all,
I am forwarding this because I think it is beautiful and a good thing to share. I removed the junk at the bottom at sending it to X number of people and getting my wish. It is just that I love roses (as many of you know) and these are some beauties! I think the sentiments are wonderful too. I send my sentiments along with these. :-)
Love & God bless always,
Mary Ann
Absolutely fascinating. What fun you must have had finding all this out. I enjoy hearing about your ancestors. Thanks Joanie.
Betty
bbutterfly@...
What a neat story, Joanie. You would never have known about the family connection if you hadn't been interested in your ancestors. It really is fun and interesting tracing your genealogy.
Betty
bbutterfly@...
hi all
i think this is a good idea. i'm curious about everyone else too.
in answer to sooey's questions
female
55 years old
diagnosed at age 20
in my lungs and liver
i'm caucasian
live in the pacific northwest (way in the upper corner of usa)
my sarc was discovered in my first yearly exam. the cough was what
got the attention. it went from there.
my dh is retired and i work 3 days a week in computers.
and i too, don't know any one with sarc. only you folks.
/|
maggie & ____/ |
lucky chance ____/o^ |\
at warp works studio \------/\ \
\______ | |
mageez@... \ \
|
I believe that friends are quiet angels who lift us to our feet when
our wings have trouble remembering how to fly.
author unknown
Hi Mary Ann!
I just started on Micalcin. So, that is great news to hear it has really helped you!!! I can no longer take fossamax due to my loss of kidney function, and I find the nose spray to be really easy to use, and it seems to help my sinus pain as well! I've been told it is less effective, but has a lot side effects as well
So, thanks for the good news! I'm staying with it.
Love Louise
Eric & Mary Ann Holman <holman@...
Hey everyone,
Seeing Diane's post reminded me of something I keep forgetting to post. Those that are on/have been on Pred. or just have developed osteoporosis check your MDs about a drug called MiaCalcin. It is a nasal spray medication specifically for osteoporosis (boy I hate spelling that word!!). I was started on it about 10-11 years ago for severe bone pain I was having in my left knee/lower thigh. An MRI showed a small amt. of osteoporosis (we had been fearing aseptic necrosis). I had been taking 10mg. Valium, Tylenol w/codeine & neither were touching the pain--well after 45 minutes or so, but it was HORRIBLE pain! When my internist saw the MRI report, he decided to start me on MiaCalcin because one of it's other things it does is work on bone pain. After taking all the heavy tranquilizers & pain pills I thought my MD had lost it, prescribing something I sprayed up my nose once a day. Yeah, right. Well, it worked like gangbusters. Three days or less and the pain was
gone!! Never to return again. I have stayed on it because if I skip it for very many days, the pain starts coming back. No thanks.
Anyway, my MDs think the reason my bone strength has stayed so good even w/the Pred., is due to MiaCalcin. When they did the last bone scan, there was no "discernible" signs of osteoporosis.
Something to check into if you don't use it & have osteoporosis.
God bless,
Mary Ann, OR
Hi Group:
My name is Diane and I live on Long Island, New York. I lived in Queens, NY until I was 7 yrs. old then moved to Long Island where I have been since then. I am 42 year old Caucasian and have been married to a wonderful man for a little over 9 years. I do not have any children but have a cat, her name is Midnight.
Like so many others, I believe my battle with Sarcoid started many years ago. I have had many health issues through my teen years into my young adult life. I was diagnosed with uvetis when I was 17 which was treated with steroids. I believe back then they had no idea of immune disorders and really had no explanation why I came down with uvetis. When I was 35, in December of 1995, I was diagnosed with End Stage Renal Disease. It happened very quickly and I was very frightened, not knowing what has happening to me. I was rushed to the hospital with a creatine of 27 and put on dialysis immediately. My renal specialist said I was about 2 days away from death. I was advised against a renal biopsy by my renal doctor so I have no idea what took my kidneys but whatever it was it shut them down completely in 2 weeks. In January, 2001 I had pneumonia and pleurisy; just about 1 year after having that, I was having pain in my chest and difficulty breathing. I went to a lung
specialist who found my breathing was a 65% of capacity and the test began. I went for an open lung biopsy in September, 2002 and that's when they found Sarcoid. I am now on and off prednisone and have 2 different inhalers, Advair and Combivent. My lung specialist thinks the Sarcoid is doing damage to my bronchial area and may be setting off asthmatic attacks. I also have the horrible sinus pain, the fatigue, the pain in my bones, all the problems we deal with each day. They have now found that I have osteoporosis, just another problem. The dialysis and prednisone are not helping that situation at all. My renal specialist isn't sure we can treat the osteoporosis, the medication is not recommended for dialysis patients.
Well, that's my story in a nut shell. I pray everyone is feeling as good as they can.
Love,
Diane
To unsubscribe from this group, send an email to:
Hey everyone,
Seeing Diane's post reminded me of something I keep forgetting to post. Those that are on/have been on Pred. or just have developed osteoporosis check your MDs about a drug called MiaCalcin. It is a nasal spray medication specifically for osteoporosis (boy I hate spelling that word!!). I was started on it about 10-11 years ago for severe bone pain I was having in my left knee/lower thigh. An MRI showed a small amt. of osteoporosis (we had been fearing aseptic necrosis). I had been taking 10mg. Valium, Tylenol w/codeine & neither were touching the pain--well after 45 minutes or so, but it was HORRIBLE pain! When my internist saw the MRI report, he decided to start me on MiaCalcin because one of it's other things it does is work on bone pain. After taking all the heavy tranquilizers & pain pills I thought my MD had lost it, prescribing something I sprayed up my nose once a day. Yeah, right. Well, it worked like gangbusters. Three days or less and the pain was gone!!
Never to return again. I have stayed on it because if I skip it for very many days, the pain starts coming back. No thanks.
Anyway, my MDs think the reason my bone strength has stayed so good even w/the Pred., is due to MiaCalcin. When they did the last bone scan, there was no "discernible" signs of osteoporosis.
Something to check into if you don't use it & have osteoporosis.
God bless,
Mary Ann, OR
Hi Group:
My name is Diane and I live on Long Island, New York. I lived in Queens, NY until I was 7 yrs. old then moved to Long Island where I have been since then. I am 42 year old Caucasian and have been married to a wonderful man for a little over 9 years. I do not have any children but have a cat, her name is Midnight.
Like so many others, I believe my battle with Sarcoid started many years ago. I have had many health issues through my teen years into my young adult life. I was diagnosed with uvetis when I was 17 which was treated with steroids. I believe back then they had no idea of immune disorders and really had no explanation why I came down with uvetis. When I was 35, in December of 1995, I was diagnosed with End Stage Renal Disease. It happened very quickly and I was very frightened, not knowing what has happening to me. I was rushed to the hospital with a creatine of 27 and put on dialysis immediately. My renal specialist said I was about 2 days away from death. I was advised against a renal biopsy by my renal doctor so I have no idea what took my kidneys but whatever it was it shut them down completely in 2 weeks. In January, 2001 I had pneumonia and pleurisy; just about 1 year after having that, I was having pain in my chest and difficulty breathing. I went to a lung
specialist who found my breathing was a 65% of capacity and the test began. I went for an open lung biopsy in September, 2002 and that's when they found Sarcoid. I am now on and off prednisone and have 2 different inhalers, Advair and Combivent. My lung specialist thinks the Sarcoid is doing damage to my bronchial area and may be setting off asthmatic attacks. I also have the horrible sinus pain, the fatigue, the pain in my bones, all the problems we deal with each day. They have now found that I have osteoporosis, just another problem. The dialysis and prednisone are not helping that situation at all. My renal specialist isn't sure we can treat the osteoporosis, the medication is not recommended for dialysis patients.
Well, that's my story in a nut shell. I pray everyone is feeling as good as they can.
Love,
Diane
To unsubscribe from this group, send an email to:
Hi Group:
My name is Diane and I live on Long Island, New York. I lived in Queens, NY until I was 7 yrs. old then moved to Long Island where I have been since then. I am 42 year old Caucasian and have been married to a wonderful man for a little over 9 years. I do not have any children but have a cat, her name is Midnight.
Like so many others, I believe my battle with Sarcoid started many years ago. I have had many health issues through my teen years into my young adult life. I was diagnosed with uvetis when I was 17 which was treated with steroids. I believe back then they had no idea of immune disorders and really had no explanation why I came down with uvetis. When I was 35, in December of 1995, I was diagnosed with End Stage Renal Disease. It happened very quickly and I was very frightened, not knowing what has happening to me. I was rushed to the hospital with a creatine of 27 and put on dialysis immediately. My renal specialist said I was about 2 days away from death. I was advised against a renal biopsy by my renal doctor so I have no idea what took my kidneys but whatever it was it shut them down completely in 2 weeks. In January, 2001 I had pneumonia and pleurisy; just about 1 year after having that, I was having pain in my chest and difficulty breathing. I went to a lung
specialist who found my breathing was a 65% of capacity and the test began. I went for an open lung biopsy in September, 2002 and that's when they found Sarcoid. I am now on and off prednisone and have 2 different inhalers, Advair and Combivent. My lung specialist thinks the Sarcoid is doing damage to my bronchial area and may be setting off asthmatic attacks. I also have the horrible sinus pain, the fatigue, the pain in my bones, all the problems we deal with each day. They have now found that I have osteoporosis, just another problem. The dialysis and prednisone are not helping that situation at all. My renal specialist isn't sure we can treat the osteoporosis, the medication is not recommended for dialysis patients.
Well, that's my story in a nut shell. I pray everyone is feeling as good as they can.
Love,
Diane
Bill,
Thanks so much for taking the time to write me about your experiences with this in regard to Joey. It helped a lot to feel like there were others this had happened to, and also your explanation about the different sorts of blood.
We did go see Dr. Mallory, our pulmonologist at Tx. Children's. He had Becky get a chest x-ray, examined her, listened to her breathe, asked questions, etc. He said her x-ray looked different from the last time, but that he couldn't see anything definite on it that was wrong. His belief is that given that she has a respiratory infection, combined with being on Coumadin which thins her blood, all the coughing and her having PH and he says the blood vessels in lungs with high pressure in them are more fragile than those of normal people.
He said that he could have her admitted to the hospital, but that she didn't seem to be in breathing distress even though she is breathing with more difficulty than usual, and the bleeding had slowed down some at the time we were there (and is still that way now). So he said given that he knew Becky and I both well, and knew that I would call if anything worsened, that he was willing to send her home, and have her continue to take the antibiotic, and he prescribed such Vicodin which he said would relieve her chest pain and also has the side effect of suppressing coughs so she won't cough as much and he is taking her off Coumadin temporarily. He said for me to call him on Monday and let him know how she is doing. And that if she gets worse I am to call the pulmonologist on call at night if needed.
It is strange that Becky has had this wretched disease since she was 6 and is now 17 and almost 18, and yet we've never dealt with this issue of coughing up blood until now. Perhaps because Becky doesn't seem prone to get maladies that she coughs with very often.
Pam
Bill Nelson <dgccandwrr@...
Pam,
Joey coughed or vomited up a lot of blood in his
time with us, and there are several serious distinctions
that need to be made. The first is is this old blood or
new blood. old blood is dark rust brownish, which Jennifer
refers to as coffee grounds. Old blood is less worrisome,
as it is old and the source may already be healed up .
Bright red blood is new blood, and more worrisome.
The next variable is where is the blood coming from.
Joey had a lot of nosebleeds, to the point where it wasn't
considered serious until all of his clothes and half of
mine were in the washing machine. sometimes the blood would
come out the nose, and other times it would go down the
throat, to be coughed up or thrown up later. with a sore
throat there is also the possibility of bleeding in the
throat.
a
more serious concern is a pulmonary bleed, where the
little sacks where the oxygen is transferred into the blood
in the lungs pop from the high blood pressure.
So you have a lot of possibilities concerning the
source, and seriousness of this blood being coughed up, it
may become another frightening thing that you learn to live
with one you know where it is coming from, but it is
something which may be serious, and should be evaluated by
a doctor. So it is a good thing Becky has a
pulmonologist who can see her asap, cause when you go to
the emergency room with something like this, nobody there
will know anything about PH. I hope this turns out to be
one of those things that is more of a scare than a
serious set of new problems. Seeing the Pulmonologist is the
right thing to do. Jennifer has just got home from a
long day @ clinicals, so this letter has been run by an
editor, and is a little better than my normal ramblings.
Please keep us posted , Yall will be in our prayers.
Bill Nelson, Jennifer's Husband Joey's dad
Happy Anniversary to you!
Happy Anniversay to you!
Happy Anniversary Ray and Liz!
Happy Anniversary to you!
(and many more)
Carol
Pam,
Joey coughed or vomited up a lot of blood in his
time with us, and there are several serious distinctions
that need to be made. The first is is this old blood or
new blood. old blood is dark rust brownish, which Jennifer
refers to as coffee grounds. Old blood is less worrisome,
as it is old and the source may already be healed up .
Bright red blood is new blood, and more worrisome.
The next variable is where is the blood coming from.
Joey had a lot of nosebleeds, to the point where it wasn't
considered serious until all of his clothes and half of
mine were in the washing machine. sometimes the blood would
come out the nose, and other times it would go down the
throat, to be coughed up or thrown up later. with a sore
throat there is also the possibility of bleeding in the
throat.
a
more serious concern is a pulmonary bleed, where the
little sacks where the oxygen is transferred into the blood
in the lungs pop from the high blood pressure.
So you have a lot of possibilities concerning the
source, and seriousness of this blood being coughed up, it
may become another frightening thing that you learn to live
with one you know where it is coming from, but it is
something which may be serious, and should be evaluated by
a doctor. So it is a good thing Becky has a
pulmonologist who can see her asap, cause when you go to
the emergency room with something like this, nobody there
will know anything about PH. I hope this turns out to be
one of those things that is more of a scare than a
serious set of new problems. Seeing the Pulmonologist is the
right thing to do. Jennifer has just got home from a
long day @ clinicals, so this letter has been run by an
editor, and is a little better than my normal ramblings.
Please keep us posted , Yall will be in our prayers.
Bill Nelson, Jennifer's Husband Joey's dad
Hi Sooey,
This is a great idea, especially for all the newbies. I don't mind sharing this information, although I might make it a bit more confusing. Hope not! Here goes:
I'm femaile
I am 33 years old
I am caucasian
I have only lived in Calfornia and England
I was diagnosed with Sarcoidosis (after initial diagnoses of JRA) when I was 6 - although I had the Erythema nodosum when I was 3-
I had fevers, non-productive bone marrow, enlarged spleen and liver, uvietis and minor arthritis. Sarcoidosis became the diagnoses when I had non-caseating granulomas biopsied from an exploratory surgery on my abdomen. I have had a skin biopsy as well.
Later, it showed up in my kidneys
I have never had it in my lungs
I also have intense sinus pain (I'm with ya Ray) most of my life, as well as my brother
I have had "sarcoid meninigitis" - does that mean it affected my CNS?
The last 15 years, Sarcoidosis has been incredibly managable for me. Most of the problems have "gone away". However, I was diagnosed with another kidney ailment in October that "they" aren't sure is related.
Love Louise
I am a female.
I am 53 (yikes) years old.
I was 53 when I recieved my diagnosis.
My sarc is in my lungs & lymph nodes.
I am caucasian.
I live in the north east, U.S....CT
I did not go to the Dr. with symptoms of sarc, it was discovered
through abdominal x-rays, in which, they could see the bottom of my
lungs.
I don't know anyone else with sarc...only YOU!
I hope this is not too personal for some of you. This Sarcoidosis
stuff is so new to me and I find that I have many questions.
I hope where you are, it is sunny, warm and wonderful...it's a little
cold and wet here in CT.
My best to you,
Sooey
To unsubscribe from this group, send an email to:
Hi Pam,
I am so sorry to hear that Becky is experiencing coughing up blood or hemoptysis. Noel had this for quite a number of years.....it started when she was around 14 years old. I think it is great that they are evaluating her right away because then you will know if it is something to do with her infection.
I won't try to go into my bogus medical explanation of how I understand it because Jennifer could do more here.
First there are some things to remember with hemoptysis and the first is......don't get Becky upset and keep her as calm as you can during the episode. Noel had codine for and at the first sign of coughing she would take it. Some things changed with Noel as she aged and that's why the hemoptysis started......it was something bad.......but Noel still lived on for a number of years....
i am telling you........calm is the way to go esp. when the hemoptysis starts....
we got so we would not take Noel to the hospital unless it was very hard because that would upset her more to have it driven home that she was getting worse or doing worse at that moment. I also took a dropper and dyed water red and dropped it on a piece of toilet paper and let Noel see how it spread out......when liquid hits something and spreads it always looks like sooo much more and that can really make you nervous..........so reinforcing once in awhile with the visual.......so you can tell her just because it looks like a lot doesn't mean it is.....tell Becky to make her self calm and relax and then it can stop because not moving around and stuff or coughing will help it stop...
GET A SCRIPT FOR CODIENE TODAY AND DO NOT....I REPEAT....DO NOT LEAVE THAT DOCTORS OFFICE WITHOUT IT....unless Becky is allergic to it or there is a contraindication.....it is the thing that worked for Noel....as her condition progressed I had even given it too her more than prescribed...the doc knew this and I never saw any problems with breathing or anything......
If becky starts coughing hard before you get it....take her to the er and have them give her one.....
Her chest will hurt with hemoptysis and Noel used to get wheezy also. You will get so you will notice subtle signs before anything like this happens.
this time it could have been aggravated by the underlying condition.....Noel also had eisenmenger and in that condition you are always making new collateral circulation and those fresh new vessels wouldn't be able to take the enormus pressures and they would burst.
but I got so i would know when it was going to happen....maybe a bit more than usual cyanosis and water retention.....at first i couldn't.....but this can get more manageable as time goes on.
I told you I was so sorry because I think this is one of the harder aspects of eisenmenger and ph to deal with. it frightened Noel a lot for quite awhile and when it happened she was very concerned about dying.
Be strong and know someone loves you in NY and wishes she was there to let you play with her new pup because she is soo delightful and cute I named her Bliss. I wish I was there for real to give you a big hug.......I hope you have someone strong who can......I know it is hard on all of your family members......
write if you need to..
both my older daughters have email and and they are both great girls...
if any of your other children ever need to speak to another sibling who has been through hemoptysis plus what seems like almost everything else......I am sure they would be happy to answer their questions or speak to them about their fears........snail mail would also be okay....just an offer....don't mean to offend....but my kids never had anyone but us to speak too because hemoptysis can be kind of rare......hang in girl and i will be saying some prayers for all of you....me
Hi Sarc Gang!
I hope that you all had a nice and restful Labor Day. Now it's back
to school, work and into the Fall! Oh My.
I've been wondering about all of 'us'. It's interesting to read about
where our families are from, background, etc., but I'm wondering
about some other stuff also. We all have at least one HUGE 'thing' in
common with eachother...Sarcoidosis. But do we have any other common
threads as they relate to Sarcoid? Like, how old are we now and how
old were we when we first learned we had Sarcoid? How many of us
are male and how many of us are female? What part of the world do we
live in, etc. Since I am new to this group, I don't know if this info
has already been given, sorry if it has, but I think it would be
interesting to compare notes. I'll start.
I am a female.
I am 53 (yikes) years old.
I was 53 when I recieved my diagnosis.
My sarc is in my lungs & lymph nodes.
I am caucasian.
I live in the north east, U.S....CT
I did not go to the Dr. with symptoms of sarc, it was discovered
through abdominal x-rays, in which, they could see the bottom of my
lungs.
I don't know anyone else with sarc...only YOU!
I hope this is not too personal for some of you. This Sarcoidosis
stuff is so new to me and I find that I have many questions.
I hope where you are, it is sunny, warm and wonderful...it's a little
cold and wet here in CT.
My best to you,
Sooey
hi joanie
what a wonderful story of the family circle.
/|
maggie & ____/ |
lucky chance ____/o^ |\
at warp works studio \------/\ \
\______ | |
mageez@... \ \
|
I believe that friends are quiet angels who lift us to our feet when
our wings have trouble remembering how to fly.
author unknown
Hello all,
My daughter, Becky, 17 has strep throat about two weeks ago and took a round of antibiotics. Then this week she was complaining of a sore throat and had a cough. Finally, yesterday she started coughing up blood - not constantly but a fair amount of it. I talked to Dr. Mallory, her pulmonologist and he said he thought she still had some infection, he would prescribe a new antibiotic, but that the bleeding was common with PH patients when they were sick.
I am wondering if anyone else here has experienced this with their child?
Then last night she woke up at 3:00 a.m. telling me that she was coughing up blood and couldn't get it to stop. I got my husband up, too. We called on the call pulmonologist at TCH, talked to her and she said she thought Becky needed to go to the hospital but that the TCH ER was full at the moment, and it would be better if she was able to wait until 8 or 9 and a.m. this morning. By this time the coughing had slowed down a lot. The other thing that bothered me was that her chest hurt, she was wheezing and she was having a hard time breathing. I finally got her to sleep by propping her up with pillows in her bed and putting on oxygen at 4 liters.
Dr. Mallory has called me back this morning and said he believes she needs to be evaluated, so we'll see him at 1:30 p.m. today. They offered the ER instead, but their ER is always such a mess, that we'll try to hold out to see him.
If anybody has had a similar experience with a PH child, please let me know.
Thanks.
Pam Adams
In a message dated 9/1/2003 1:00:50 PM Central Standard Time, snowblindoutlaw@... writes:
I also discovered that a lot of the last names in both charts keep coming up, and I have a strange feeling that somewhere along the line I'm gonna find a connection telling Liz and me we were related sometime in the past
LOL...this same scenario actually happened to my brother and his wife!
When we were kids, my family lived 3 miles down the road from another family with the last name Montgomery. The Montgomery children were Deborah, Timmy and Bethany. Me and my little brother and little sister were Joanie, Gage & Tina. Well, it just so happened that the three Montgomery children were in the same 3 grades in school as us three "Bean" children. So, I was friends with Deborah, my brother Gage was friends with Timmy, and my sister Tina was friends with Bethany. We all grew up together.
Well, several years down the road, when they were in their 20's, my brother and Bethany met again and began dating, and lo and behold, they ended up getting married. We just thought it was so neat, that this girl we had all grew up with, that had driven my dad's 4-wheeler and wrecked it, whose sister I played basketball with and spent the night with several times, etc., was now a part of our family....was my sister-in-law.
Well, my brother and Bethany got pregnant with their first child and found out it was going to be a girl. So, they decided that it would be really neat to look in their family history and name their child after someone in their family's past. So, my brother came to my dad's house and they looked at old family charts there, and saw that my brother had a 4th great grandma named Hannah Mabray. They liked the name Hannah, and agreed that that might be a good name for their daughter. Then, a few weeks later, my sister-in-law was at her grandmother's house and asked her if she could see HER family charts, to get more ideas for names. Well, she noticed that she ALSO had a 4th great grandma named Hannah, but her's was Hannah Whitworth. Because BOTH of them had a 4th great grandma named Hannah, they agreed it would be neat to name their daughter Hannah, so it was decided.
Well, not long after Hannah was born, someone was talking about how she was named after Hannah Mabray from our family tree, and my sister-in-law goes "No, it was MY ancestor who was named Hannah Mabray, not YOURS!" But, we argued that no, it was OUR ancestor with that name. This got them to wondering, so they went and got both family's charts and compared them, and found that it was the SAME EXACT LADY. She had been named Hannah Whitworth at birth (which was the last name on my sister-in-law's charts) but had married a man with the last name Mabray (which was the last name listed on OUR charts). But, her birth and death dates were the same and all her children were the same!
So, my brother and his wife are 5th cousins to each other. And, what's worse is, they live in Arkansas, so they get teased unmercifully about how everyone in Arkansas always marries their cousin! LOL But, if the truth be known, I bet half of the married people in the world today, if they were able to trace their families back far enough, would find that they connect SOMEWHERE down the line. We are probably all related to our spouses somewhere down the road. LOL
So my little niece Hannah was named after a 5th great grandma of hers who is her 5th great grandma on BOTH sides of her family! And, the weird thing is, she was named after her before the family even realised that she WAS from both sides of the family. My brother jokes that Hannah's family tree is just a circle...it starts with Hannah, then branches out, then comes back together at Hannah again. LOL
Joanie
Hi guys,
guess what...the crap hit the proverbial fan when the arc's most recent newsletter came out and they had the people connected with the agency..in memoriam page for 2006 and who did they forget about....or omit by accident...
you guessed it.....my Noel. Even though Noel is gone now...they are still finding ways to kill me...there is more to the story ...but ron says I shouldn't always be upsetting everyone on here.......
sorry..
so things had been going from bad to worse seemingly and with the crying and saddness and I wanted to get a puppy because the kitten I got is miss aloof unless her boyfriend ron is home.......so....
last night I got a poodle puppy.....she is sooo cute...she is very light apricot with red ears....she is a standard and I had never seen one in person before and I was surprised at how big she is. i thought they would be little like in the palm of your hand....she just turned eight weeks and what a cutie she is.
i know this really isn't the place for me to write this...but I like to share some good news too and maybe she can bring some happiness into my life.
I think she is doing it already because she is sooo darn cute she makes me laugh.
Wish for me that it warms up because it is still below zero and everyone knows an 8 week old pup...can't or won't be housetrained in that weather...thankfully it is supposed to go into the 40's this weekend.
love you all, thank you for letting me share my news...celeste
In a message dated 9/1/2003 1:00:50 PM Central Standard Time, snowblindoutlaw@... writes:
In tracing mine. I found out our roots go back to people like Ben Thompson
That was really interesting reading about the neat things you've discovered about your family's past, Ray! I have so far only been able to document two different famous people that I am related to....one who's alive today, and another who was a famous person in our history, a former President, in fact! President Thomas Jefferson was my 2nd cousin, 8 times removed. Seems that the president's father was Colonel Peter Jefferson. His grandfather was Captain Thomas Jefferson, and his great grandfather was also named Thomas Jefferson. Well, I descend from this same Thomas Jefferson who was the great grandfather of the president, only I descend from a different child of his than the president does. The president's grandfather (Capt. Thomas Jefferson) had a sister named Mary Jefferson, who was my 8th great grandma. How it got down to me was that Mary married a man named Thomas Harris. One of their children was Edith Harris (my 7th great grandma). Edith married Henry Trent
III. One of their children was Henry Trent IV (my 6th great grandpa). Henry had a child named Edith Elizabeth Trent (my 5th great grandma). Edith Elizabeth married Sgt. Thomas Guthrie Moore (my 5th great grandpa), a Revolutionary War soldier. They had a child named Elizabeth (Betsy) Moore (my 4th great grandma). Betsy married Samuel Gimlin, and they had a son named John Gimlin, who fought as a sergeant in the Civil War on the confederate side. John fought in the the battles of Allatoona Pass and Franklin, Tennessee. He was captured and held prisoner for a time, and nearly starved to death. When he was finally released at the end of the war, he had to walk some 500 miles home, begging for food along the way. His wife (Lucy Bradley...my 3rd great grandma) had believed him to be dead, but when she heard that he was alive, she rushed out on a horse to meet him. She found him barely able to go on, and threw him on the back of the horse and brought him home and nursed
him back to health. Grandma Lucy was a tough old broad. She was said to be no more than 100 pounds, but could handle a horse and wagon as well as any man. She was of Indian ancestry (we think Cherokee). She carried dispatches under her bonnet to confederate officers during the war, and sewed clothing and made food for the enemy Union soldiers to keep them from looting and burning her home (but in the end her home was burned anyway). She lost her two oldest sons who were killed by bushwhackers during the war.
Here's a picture of my 3rd great grandparents...John & Lucy Gimlin...
[INLINE]
John & Lucy's youngest child was Rebecca "Elizabeth" Gimlin, who was my great-great grandma. Elizabeth grew up and married Robert McKinley Baskin. Here's a picture of the two of them...
[INLINE]
Elizabeth and Robert had 14 children, one of them being my great grandpa, Robert "Thurlow" Baskin. Thurlow fought in World War I. He served for the U.S. cavalry, and was stationed in France, where his duties were to care for the horses. When he grew up, he married my great-grandma, Estelle Pauline McMillan. Here's a picture of my great-grandparents, Thurlow & Estelle Baskin...
[INLINE]
[INLINE]
Thurlow and Estelle had 4 daughters...Beth, Joy and twins Alma and Wilma. The 2nd one, Joy, was my grandma. She married Clarence "Junior" Bean. Grandpa Junior served our country during World War II. Here's a picture of Grandma Joy & Grandpa Junior Bean, with their oldest son, my Uncle Dennis...
[INLINE]
Joy & Junior had 6 children, the 3rd of which was my dad, James Norman "Jim" Bean. Then Daddy had me! So, that's my story! :-)
Oh, and the 2nd famous person I have found that I am related to is Rush Limbaugh. He is my 6th cousin, once removed. Our common ancestor is David Dewald Speck, who was born in Germany, but came over to America in the 1700's, and died in North Carolina. Two of David Dewald Speck's children were Sophia and Eva. Rush Limbaugh descends from Sophia (his 5th great grandma) and I descend from Eva (my 6th great grandma). Neat, huh?
Joanie
Hi Bill
I only get a few spam messages now and then thru this list, usually I just block the sender. Has there been an increase in spams lately? Also I didn't know that we had a moderator, I thought we were screened as we joined up???
best wishes
chris
mum to Tara
Thanks Diane...We appreciate the covering!!
Terry
Diane Greenhalgh <diane@...
Hello all! Sorry about all the spam on this listserv recently. One of the parents on the list usually lets us know a little sooner when theres a spammer that needs to be banned. She hasnt been on the list recently. The two spammers are now banned and Ive subscribed myself to the list to keep track to make sure that if any more spammers come on they are immediately banned. This should clear up the problem. Any questions feel free to contact me at this email (Diane@PHAssociation.org) or the below phone number.
Happy emailing all!
Diane Greenhalgh
Director of Internet and Print Services
Pulmonary Hypertension Association
301-565-3004 x119
www.PHAssociation.org
************
Pathlight Survey
Help us meet your needs. Take a few minutes to tell us how the PH community's newsletter is doing - good or bad!
http://www.surveymonkey.com/Users/91771627/Surveys/911153103558/8FE54031-3371-4DE9-9651-341A84C4BA2B.asp?U=911153103558&DO_NOT_COPY_THIS_LINK
Folks apparently we have an absentee moderator, or
these spammers would be gone. they are busy trying to make
money on the internet, and have no time for morals. I
believe our moderator is the only person who has the
authority to bounce these folks off the list, and that is
what needs to be done. several days ago I e mailed the
moderator from the list member's page, but nothing has
happened.
If you go to the PH Parent's page, click on the
members section, and the moderator's name is @ the top of
the list with a little crown symbol by it. we all need
to go there and look at this , and see if we can figure
out who this person is (possibly someone from the PHA) ,
and find a way to contact them, so that we can do what
must be done. It doesn't give us a name so all we have
is a screenname and an e-mail link.
Hello all! Sorry about all the spam on this listserv recently. One of the parents on the list usually lets us know a little sooner when there's a spammer that needs to be banned. She hasn't been on the list recently. The two spammers are now banned and I've subscribed myself to the list to keep track to make sure that if any more spammers come on they are immediately banned. This should clear up the problem. Any questions feel free to contact me at this email (Diane@...) or the below phone number.
Happy emailing all!
Diane Greenhalgh
Director of Internet and Print Services
Pulmonary Hypertension Association
301-565-3004 x119
www.PHAssociation.org
************
Pathlight Survey
Help us meet your needs. Take a few minutes to tell us how the PH community's newsletter is doing - good or bad!
http://www.surveymonkey.com/Users/91771627/Surveys/911153103558/8FE54031-3371-4DE9-9651-341A84C4BA2B.asp?U=911153103558&DO_NOT_COPY_THIS_LINK
Beautiful Ray. Thankyou.
Betty
bbutterfly@...
Dear all,
I have a 5 year old with PPH (just diagnosed). We play on my sisters Wii.
I think you are right about the Nintendo. One can work up a sweat - or simply sit and move your arms. It's as vigorously fun as you make it.
I confess, the first time I used it, I went all out and the next day my arms hurt too! I think it's just because we're not used to working those musclesJ. It went away after a day of playing.
Another great game that just came out is called WII PLAY. It comes with another remote and has 9 new games (ping pong, air hockey, pool, skeet shooting and more.)
All in all it's a great "exercise" option for your daughter.
Steve
Shannon turned 12 yesterday. She was diagnosed with PPH almost six years ago and is on Flolan, coumadin, nifedidpine and Revatio. This year for her big present we gave her a Nintnedo Wii, pronounce we. For those of you unfamiliar with the Wii it is a video game that instead of just pushing buttons and moving the joystick you actually have to move the remote. For example to play tennis you actually have to move your hand holding the remote like you are swing a tennis racket. My nephew got one for Christmas. Shannon enjoyed playing it so I thought what a great way for her to get excercise without over exerting herself.
I am wondering if anyone else has purchased a Wii for this reason. So far it seems to be working. We gave Shannon the Wii on Friday night because she had a sleepover. Shannon and her friend played the it for about three hours and then got up Saturday morning and played some more. On Sunday both of them complained their arm hurt. If you have one please let me know what games you have that me encourage her to exercise more.
Bill from Boston
Hi Gail, I have forwarded your letter to the group along with my response. If even one person benefits from the information, then I'm happy.
I'm sorry you are having so much stomach problems. Food is such an important part of our lives and to have to drink your meals must be so difficult for you. Have you been diagnosed with sarc. in your stomach? or is there something else going on? Are you still losing weight? Perhaps your doctor should have you checked out by a gastroenterologist. Please keep us posted on what is going on with you and your test results.
I'm keeping you in my prayers Gail and hope you will get some relief from your stomach problems soon.
Take care, hugs,
Betty
Betty, please share my e-mail with the group. My ACE level is now 55.
It has fluctuated up and down since it spread to my spleen last summer.
Unfortunately, my cholesterol was high (good and bad chol.), so he put
me back on Lipitor. My dr. thought since I'd lost so much weight and
exercised the way I do now, that I could get off the Lipitor. But, it
was back up to 213 so I'm back on Lipitor. It can't be diet induced or
lack of exercise. Since I have so many stomach problems, I pretty much
stay on a liquid diet that consists of low-fat milkshakes and I drink
Boost and Gatorade and eat some fruits! That is the strange w/the blood
thing--too thick to go through the needle. Anxious to hear your test
results. Thanks for the e-mail...take care and hope you have a good
week. Gail in Alabama
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Hi all, this is a letter I received from Gail. She was answering my post about my ACE test level jumping so high and sent it directly to me instead of the group. Because I feel that we learn so much from everyones posts I asked her if I might forward it on to the group. She said yes so here it is. Followed by my answer to her.
Hi Betty, sorry to hear about your ACE level. Mine last summer was 61
in June, 62 in the fall and then this past April it was down to 54. It
spread to my spleen last summer when it was active and unfortunately,
they didn't know for sure what it was, so they took the spleen out. If
they had known it was Sarcoid, I would still have my spleen. But my dr.
said the same as yours, normal is 5-52. Maybe yours won't go any
higher. My dr.'s won't put me on any meds for Sarcoid anymore. I've had
Sarcoid for 23 years now (lungs). The prednisone does more damage than
good I'm afraid. We need new meds for Sarcoid. But back to your ACE
level, hopefully, when they re-do it, it will be down some. I just had
mine done yesterday, and should have results by end of the week. Will
let you know what they are. I feel like my breathing may be down a
bit...when I walk, exercise, the hills seem to be a little tougher.
Good luck...want to hear your results and will let you know mine. Take
care...Gail in Alabama
Hi Gail, wondering where the Sarcoid may be invading next is what worries
me. This is the first time my ACE level has been this high. 7 was the
previous high. Now I'm wondering, "could the Methotrexate actually be
making it worse?" Probably not but that is the only new thing in my life.
Lots of questions arise.
I'm sorry you had to lose your spleen. Are there any adverse effects from
having that done. I've known a couple of people who have had to have
their's removed due to accidents.
I'll be anxious to hear the results of your tests. I hope your ACE level
will be down too. Gail, when you are resting, do you have a noticeable
problem breathing, or is only when walking or exercising?
Gail, do you mind if I send your email on to the group. You sent it to me
privately. I think everyone learns from these posts. Let me know. I won't
send it on without your agreement and there is no problem if you don't. I
agree with you about the Prednisone, as it did dramatic damage to me. My
doctor said I should never have it again. I'm wondering if we would be
better off without any of these dangerous drugs. I really wish I had never
been treated in the first place. I see the other types of meds such as
inhalers in an entirely different light. I think that they can be necessary
and very helpful to treat symptoms. I just question the ones I consider
dangerous. Thanks for writing and telling me about your ACE level. I had
mine redone that day I saw the doctor but won't know what it is until my
next appt. the end of Sept. I'm still hoping it may have been a mistake. A
funny thing happened when they drew the blood for the ACE that was 50. They
had to stick me 4 times, each time using a larger needle because the blood
was too thick to come through the needle. Lung doctor says it was a fluke,
maybe the way my arm was positioned. I saw it for myself though. "I was
there". That has never happened before. When I had the biopsies done on my
nose one week later it was thin and had to be cauterized to stop the
bleeding. ??????? I'm waiting on the results of those tests too. If it is
cancer I think I will find out soon. The dermatologist did not think it was
sarcoid and I have had a basal cell carcinoma on my nose twice before so
that is probably what it is.
Thanks again for writing and sharing your experiences with me. It all helps
to learn and is so supportive.
Love,
Betty
bbutterfly@...
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Hi all-
No one commented on my heading of "I'm white!", but after I wrote that and posted it I felt that it looked a bit offensive, and I wanted to offer my apologies if it wasn't "politically correct". I noticed a lot of people had written "my background" and I thought that was a much nicer way of expressing one's race. I think I was thinking that even though research shows that sarcoid is more prevalant in african american cultures, I'm another example of it not being the norm....so, again, it looked offensive to me and I hope I didn't offend anyone else on the list.
Love Louise
"Betty A. Thomas" <bbutterfly@...
Louise, I wish you could find information on your dad's mom. From some things I've read there may be a heredity link. Remember Vonnie? Her aunt has/had it.
I hope you're feeling good today.
Love,
Betty