SOS-NOW ON FACEBOOK!
May
Name: Eric Gorrell
Email_Address:
gorrell_eric@yahoo.com
From: East Liverpool, Ohio
Found_Us_Via: Internet Search
Date: Saturday, May 01, 2010
Time: 01:10 AM
Comments:
Hell Im 22 I was diagnosed with Sarcoid about 6 years ago. I have it in
my lings. I was sick for about 2-3 months. I couldnt sleep, eat, barley
walk. It was horable. I since have had no symptoms of this disease. i
still have alot of scar tissue in my lungs, but nothing else. My lung
specialist said he truely believes that my sarcoid is gone and will
never return. There is hope for people with this nasty disease. He said
that 40-50% of people with it may never have symptoms again. So good
luck to everyone And never give up there is always hope. I you have any
questions email me.
Name: vickie blackwell
Email_Address:
angelofgrace7@yahoo.com
From: Fort Collins, Colorado
Found_Us_Via: Internet Search
Date: Sunday, May 02, 2010
Time: 04:48 AM
Comments:
I have wanted so much to learn more of this disease yet have been
struggling every day in dealing with it as new symptoms have been
occurring lately and I have to find the best methods of approach to
take. This website just this one time visiting; has helped me in so many
ways. Vickie
Name: vickie blackwell
Email_Address:
angelofgrace7@yahoo.com
From: Fort Collins, Colorado
Found_Us_Via: Internet Search
Date: Sunday, May 02, 2010
Time: 06:38 AM
Comments:
I am so glad that I found this website so we can work on this illness
together and try to come up with ways of beating this disease! I was
diagnosed with this illness last sept. 2009 and have been through alot.
Doctors don't quite fully understand it so feeling like a lab specimen
is common and the family cannot relate so this web site will help them
understand what I am going through. I believe that we can get to a road
of recovery with much self discipline which is what I am in dire need of
now and self motivation towards full recovery. I am so medicated and am
developing more problems such as diabetes, muscle numbness and pain,
sleep apnea which means more meds, tests and minor surgeries. I am sure
that once I can stay focused I can become a fully recovered sarcoid
patient. I believe it starts with faith, meditation, yoga, healthy
eating habits, getting rid of the bad habits, researching holistic
medicine with the goal of getting of the steriods, pain meds and many
others, eating things high in antioxins, omegas, taking herbs,
meditating, visiting a spiritual healer, maybe a psychotherepist,
finding something to do that helps make the world a better place and
doing our part to helping others, keeping a possitive outlook and making
family a priority after self. Right now I hate myself because I have no
one to share this with whom understands. I have gained so much weight,
sores on body, tired but can't sleep, feeling worthless, can't stay
focused, in pain on too many meds in bed alot can't get motivated and
hating on others. I have been spending so much money on meds and testing
also apts. that I have nothing left to spend on all the things that are
good for me. I will get there and find natural methods of healing and
share what I have learned and what helps. I am currently having weird
shaking fits, tightening of muscles, and have no idea how to deal with
diabetes. Every time they cut steriods down I become ill and they can't
understand how 5 mg. can make a difference. Thanks for listening,
Sincerly, Vickie
Name: Maria Pita
Email_Address: mipita@yahoo.com
From: Caracas, Venezuela
Found_Us_Via: Internet Search
Date: Monday, May 10, 2010
Time: 08:34 PM
Comments:
My sister-in-law has been diagnosed with pulmonary sarcoidosis. We are
looking for a specialist in Venezuela or Colombia. If you can recommend
one, please e-mail me. Many thanks.
Name: derrick
Email_Address:
d.sanders77@hotmail.com
From: alabama
Found_Us_Via: Internet Search
Date: Wednesday, May 12, 2010
Time: 11:08 PM
Comments:
I am a 33year old African American male veteran I was diagnosed with
sarcoid in 1999 did the whole prednisone thing everything was fine for a
while but overtime I have experienced aches everywhere unexplained
bruises and memory loss I went from a athletic football player to not
being able to get out of bed my ex wife was diagnosed with fibromyalgia
before my diagnosis I was wondering if there was some possible
connection between the two has anyone else had a similar story. thx god
bless
Name: OnlyGodKnows
Email_Address:
lilmissred_20@hotmail.com
From: Oklahoma
Found_Us_Via: Internet Search
Date: Thursday, May 13, 2010
Time: 02:26 PM
Comments:
my husband has sarcoid, it is in his spine, tested by mri. He has gained
a lot of weight from using prednisone. He was not able to get out of bed
at all for 6 months. Soonercare finally approved to go to hospital. His
blood sugar has been really high. He lost a lot of weight a few years
ago. Lesions on his eyes in the past. Lesions in stomach. very weak
legs, no movement. numbness. Leg stays at a bent angle. Had gotten a
very bad bed sore on ankle from its position not wanting to move. Just
more insight from another person with sarcoid.
Name: jamie bass
Email_Address:
jamiebass@yahoo.com
From: caraway arkansas
Found_Us_Via: Online Support Group
Date: Thursday, May 13, 2010
Time: 03:22 PM
Comments:
i was diagnosed w|sarcoids 2 yrs. ago it was in stage 1. i still have
symptoms i worry about weakness and my eyes, i also have nerve damage on
right side of my face due to bells paulsey from sarcoids. i feel lonely,
like no one else understands the pain and stress i deal w.im a mother of
2. oldest 16 youngest 8.this has affected their quality of life,i try to
be strong but i just do not have the strength i use to.my sarcoids comes
and goes. im tired allm the time and the ability to work and help my
husband is just gone its all i can do to clean the house do chores and
keep up with kids.i need a friend who knows what im going through.
Name: Katie Lo
Email_Address: fithgirl@aol.com
From: Texas
Found_Us_Via: Not Really Sure
Date: Thursday, May 13, 2010
Time: 11:25 PM
Comments:
Hello to All, Its been a long time since I have checked in. I have
suffered with sarc for about 13yrs now. It seems to be relentless with
me. I can hardly walk without giving out of breath. It is so
disheartening. I am on a plethora of medicines that seem to help in some
ways but there are so many other issues. I have sarcoid in the lungs and
on the skin, bags at the corner of my eyes that leak. I guess I am
writing because I am sick and tired of being sick and tired.
Name: Florence Magnusen
Email_Address:
fmagnusen@gmail.com
From: Tulsa, O K
Found_Us_Via: Internet Search
Date: Monday, May 24, 2010
Time: 10:36 PM
Comments:
I am 60yrs old and I have suffered with sarc since I was 54yrs old. The
back pain was beyond description, and I was on oxygen night and day. The
last 2yrs I have been in remission (or the pain was more manageable and
I am no longer on oxygen) but as of late the pain has gotten worst and I
am beginning to get scared. I know my doctor will not increase my
vicodin which I am currently taking to control the pain. I read online
of a supplement that might help pain due to inflammation (especially of
the joints) Well, I discovered further that it contained 6 ingredients
in back pain relievers. Has anyone used this product for sarc back pain
and did it work for you? Or if you have any advice as to a supplement
that might help would you advice as I don't want to take any drugs if
possible.
Name: Judith Riley
Email_Address:
judyr808@gmail.com
From: OR
Found_Us_Via: Not Really Sure
Date: Friday, May 28, 2010
Time: 02:21 AM
Comments:
I have been reading messages written on this sight for several years
now. I have had sarc. for 15 years. Just today I got back the results of
some blood work done and found out that my body is low in phorphorus. I
looked it up on the internet and found some symptoms I have and some I
don't. I was wondering if anyone else has this too. I hate going to the
Dr. or have labs done because I don't to know I have something new to
add to the list of effects sarc. has on my body.
Name: Jackie S.
Email_Address:
jacqueline.staples@rotech.com
From: Louisiana
Found_Us_Via: Physician Referral
Date: Friday, May 28, 2010
Time: 04:46 PM
Comments:
I was diagnosed with sarcoid 10 yrs ago. Primarily in my lungs but has
affected my skin, eyes, joints and lymph nodes. dr put me on steroids,
that lasted about maybe a month, couldn't take it so I just basically
let it run its course. Fatigue, pain, shortness of breath, lesions on my
face, belly, back and arms. I had to have cataract surgery a year ago
and now the other eye seems blurry. Have pains in my stomach and have
been seeing several drs over the years. My lymph nodes are even bigger
and putting pressure on my stomach so the dr has talked to me about
taking cytoxan and will be monitored on weekly basis. they say sarcoid
can go away but my seems to be getting worse. Does anyone out there take
Cytoxan? I may start end of June, a little hesitant.