12 Years - Happy Anniversary!

How has AddisonsDisease.Net helped me?

 

Addisonsdisease.net gave my husband his life back! This May, I was at an
all time physical, mental and emotional low seeking any support I could
find to get my husband well. He was diagnosed with Addison's 9 months
prior at age 33 and was left on his own to monitor his progress. Doctors
were unable to do much other than provide his medications and encourage
him to take more. With three little children ages 3, 2, and 1 and a very
sick husband who could barely go to work and come home to pass out from
exhaustion, I prayed A LOT. I was thankful that this was his diagnosis and
that we were all together. But deep down inside I was sad and frustrated.
Everything I was reading online talked about how people can live a normal
healthy life with this disease. I disagreed, but continued to pray and
would stay up regularly until midnight reading and researching for him.
That's when my prayers were answered and I found Addison'sdisease.net.  
This site is purely people helping people all around the world that are
connected because of Addisons. I actually hesitated to pay the $20 to join
at first, thinking it was another site of the same information. But it's
not! It's far different. You actually connect with people regularly
through emails and insightful blogs sharing your journey and reading
others.  Now, my family and I laugh and say how I would pay any amount to
this incredible website which saved my husband from another crisis. I was
given the help, support and guidance to ask his specialists the right
questions which resulted in us simply changing the brand of his
medications. This simple change has given my husband his life back. This
simple change would have never happened had we not joined this network in
May. My husband has been well, VERY WELL since July 3, 2013.  THANK
YOU Jerry and all members for your love, compassion and help! We are
forever grateful for you and this website!  Warmly, Julie & Shaun

To say that having Addison's Disease is like riding a never-ending roller
coaster is an understatement to say the least.  I have had Addison's
Disease going on 11 years now.  Each day for me has been a learning
experience.  When I was newly diagnosed I don't think I had ever felt so
alone in my life.  When I would tell people I had Addison's Disease they
would look at me like I had three heads!  Nobody knew what this was, how I
got it and if I looked so good....well you all know how that goes, so I
will not bore you with the ignorance of some people who refuse to educate
themselves on the disease of loved one or friend.  In 2009 I had a stroke,
was in a coma for 9 days and was not given much hope for
survival....SURPRISE!  I managed to survive, regained most of what had
been affected by the stroke but nonetheless....still having to deal with
learning about my disease.  Then my miracle happened!  I just happened to
be surfing the internet and came across this website called 
Addisonsdisease.net and figured, what the heck, I'll give it a try and see
if I can learn something.  Well my friends, learn something I did, and
continue to learn each and every day I log in, check emails and talk with
members of my Addison's Family.  I have had my good and bad days and it is
the bad days when my Addison's Family is ALWAYS there with love, support, 
advice...you name it.  I have received more help from     
Addisonsdisease.net than from my own physician.  I had been on Mirapex for
restless leg syndrome and Florinef.  I developed incredible swelling in
both lower legs to the point where I could not walk.  My doctor said it
was venous insufficiency based on my family history.  I had asked my
doctor to do a venous doppler ultrasound...he said I didn't need it.  I
received many emails about this problem especially from Jerry Butler.  He
was most concerned about the swelling and that Mirapex could be the
culprit.  When this was mentioned to my doctor, it too was discarded.  I
have since changed physicians and the first thing my new doctor did was
order a venous doppler ultrasound.  I was diagnosed with a deep vein
thrombosis in the left leg.  Imagine that!  So now I have to take Coumadin
for God knows  how long.  The next thing she did was to discontinue
the Mirapex and yes you guessed it, the swelling has decreased by at least
80%.  I was taken off Florinef for a short time but my blood pressures
continued to drop dangerously low.  I am now taking 0.1 mg per day and
other than feeling very tired a lot of the time, my blood pressure does
okay.  It still does drop from time to time but I was given Solu-Cortef
with syringe to carry with me at all times.  I can say with every ounce of
my being that if it were not for Addisonsdisease.net, I truly do not think
I would be here today.  I have tried to fight this disease but have
learned through so many members that I just have to go with it and listen
to my body.  I feel blessed every day to be able to chat with my family
here.  Every single one of us have the same disease but all with different
symptoms.  No two of us are alike.  We are like snowflakes!  I would like
to congratulate Addisonsdisease.net for 12 wonderfully successful years. 
Jerry - my savior!  All my friends and family here... I feel like I have
thousands    of guardian angels with me at all times. - Rita

To All,  Happy 12th Anniversary to AddisonsDisease.Net. I have been a
member now for almost 10 years as I was diagnosed with a benign brain
tumor (post pineal gland), which resulted in secondary adrenal
insufficiency. Difficult to get a correct diagnosis found out the tumor is
inoperable. Was around 33 years of age and this disease drastically turned
my life and     my families life completely upside down to say the least. 
Even though the brain tumor is benign, I wasn't given much hope from my
doctors. The tumor, in way too deep to do anything. Doctors telling me
that should the tumor grow it would split the two parts of my brain slowly
(causing   suffocation). I didn't have much hope at all at that time, my
cortisol levels low, very low. I have adrenal function and produce
cortisol, but there are times I get depleted. My prognosis was not good.
On a desperate search to find a cure for this rare disease, and a solution
to my health problems, I found this website. Joined and I am now a member
of a growing  community (family) of addisonian patients. This website in
my circle of friends I have made me feel that I'm not alone. I'm not
alone, I got you guys:):) I really never thought I'd be involved in a
support group of a disease that impacts only 1 in a 100,000 people. The
people on here are true and genuine.  They have seen me go thru bad times
and good times. The friendships and knowledge I have gained here on this
site have given me hope. Hope I lost and did not have. Very thankful for
the knowledge other's have given me that I am equipped with.  Have done
research outside of here as I am medical student. I believe between the
friendships here and all the knowledge I have gained over the years in my
disease has helped me become  proactive in my health. When I graduate
someday (soon) and get to work in the health field I do, promise, and plan
to teach my patients how to be pro-active with their health. The most
thing I think I value is the friendships I gained on this site. Kathy,
Jerry, Holly, Jan, Heidi, Leslie, and Geoffrey.  Everyone here is
wonderful. And I think my memory recalls  clearly you all helped me
understand the difference between primary and secondary adrenal insuff.
When I first joined I  did not clearly understand the difference between
the two (I was confused wondering which one I was). But with everyone's
help and clarification from my endo that I'm secondary I now understand. I
do believe Jan was a big help also with explaining this to me. Thank you
Jan. Today, together we have seen a great incline in my health compared to
when I first joined. And my brain tumor has shrunk as when they first
found it the size was a little over an inch thick, and I continue to work
on this (shrinking). Hope has been restored (Jeremiah    29:11). All of
you guys have been my strength and support when I've felt like the chair
has been pulled out from underneath me (addisonian crisis). You've always
been there for me, listening to me, and I'm thankful for that. I'm also
grateful for the on-going prayers in this group. I do believe above all
else prayer makes a difference. One more memory I recall when I first
joined, was getting my Addison's T-shirt in the mail.      It's been
almost 10 years and I still have my T-shirt. I still wear it, thinking of
my Addisonian Family all the time. The shirt makes me feel special as
every time I wear it, I remember the day it came in the mail. Your
friendships make me cheerful, and have played a big part in me getting
better.  Proverbs 17:17 says, A friend loves at all times.  Happy
Anniversary and thank you everyone. Bless you!!!!!-Julie

This website will be the best site you could ever become a member of. 
Your Addison's Family will show you support and understanding through the
best and worst times of living with Addison's. - Kamdon

Thanks Jerry...Even though I had a great Doctor who would call me at home,
I have learned more about my Addison's from AddisonDisease.Net. than    
anywhere else.  It was here where I heard about Propel, and much more
helpful hints.. Love reading about everyone else and what they are
learning and how they cope. Many thanks to Jerry, Jan and each and
everyone of you  on the site Sincerely, Kim

Jerry, Congratulations on reaching the twelve-year mark with
AddisonsDisease.Net!  I'm happy for you and your team.  We have such a
rare condition, it can be a lonely feeling.  It is very helpful to
know that others with Addison's Disease are an email away!  Thank you for
your ongoing concern and support for others, as we take this journey
together.  Sincerely, Holly

Once I'd built back up after my diagnosis, I mentioned to my wife that I
wished there were some sort of self-help group, as I had for my hearing
loss, but the density of AD patients is so low that that's not feasible...
she pointed out that there MUST be something on line.  That's how I
discovered this group.  Two things in particular I learned through the
group... both very simple, but highly strategic insights for me.  First,
the fact that I needed to get conceptually adjusted to the fact that I had
a chronic illness, and needed to manage myself accordingly.  That should
have been flamingly obvious to me, but it hadn't been.  This was like the
light bulb over a cartoon character's head.  Second, the advice that I
need to end each day with some fuel still in the tank -- otherwise, I
spend the whole next day trying to crawl back to the starting line.  This
has turned out to be such good guidance that others in my family have
adopted it as well.  With both of these advices, I now try to stop each
day before I run down, and I ALLOW myself to do so with no recriminations.
 I've also gotten help with PTSD connections, and with dental problems --
but those two strategic insights have made a great difference to my family
and me.  Kirk

What a wonderful site you have developed to help all of us.  We have
learned a good deal from you Jerry. More importantly, through our posts we
have shared much information with each other about many other health
issues and our disease. We are all different to some degree, but all of us
have gained info about what medical regimen may help in managing our
disease in  times of wellness and illness.  It is knowledge that we could
not have obtained from our health care providers: endos or pcps.  Thanks
again for all of your work Jerry. Jan

I first came to this site when diagnosed with Addison's Disease. I was
frightened and not sure of how to care for myself, but ready to fight for
my health.  What I found here was a loving and caring group of people who
were able to help me get on track and live - not only safely, but well  
and comfortably. Through their experiences, I've learned a great deal
about Addison's, both the good and the bad.  My very great thanks to Jerry
for starting this site so we have all been able to connect with others in
similar situations. The help and insight of those on this site has been
invaluable to me and to many others. I know that I would not be as strong 
 and healthy without them. Karen

I can't thank you enough for this web site and how it has become a portal 
 for all us with Addison's. I have just past my one year anniversary and
it has been a trying year. Just learning the lingo such as "stress dosing"
is huge. Being able to read of another person's AD situation and how far
people have to travel to see their doctors makes me realize that this
could be so much worse. When I get frustrated with my AD, I start reading
the emails and it really grounds me.  Thank you for keeping the sunshine
bright.  I say the serenity prayer every day "to accept the things I
cannot change and the courage to change the things I can" keeps me focused
on taking care of myself.  Warmest regards.  Suzanne

 


 

With your Addison's Disease Support membership from AddisonsDisease.Net you can expect effective extensive direct adrenal support on how to feel better with your addison's from your fellow members all over the world.  Our unique Addison's disease support community is based in part on hundreds of years of collective firsthand member experiences with addison's.  As a member or caregiver with addison's disease you can expect to receive real insight and valuable patient and caregiver experience you can take to and share with your doctor.  This kind of direct addison's support pioneered by AddisonsDisease.Net has and continues to positively impact the lives of our members with addison's, their families, caregivers and even doctors.  Doctors are empowered with the AddisonsDisease.Net support resource because it allows them access to more relevant firsthand experience with this rare disease through their patients and caregivers who are members.  AddisonsDisease.Net members discuss many addison's disease support topics subjects such as managing the disease daily, stress, steroids, hydration, working, sex, addison's diet, exercise, nutrition, depression, family, addison's & chronic illness and much more including how to support someone with addison's disease.

AddisonsDisease.Net is a trusted leader in direct online Addison's disease support and a valuable resource for patients, caregivers, doctors, hospitals and nurses worldwide. To learn more: http://www.addisonsdisease.net/

Learn More About Addison's Disease Support And AddisonsDisease.Net - Join Today! Email Fellow Members Here: (membership required)

July 27, 2011 Pat Farnack's conversation with Jerry Butler who has Addison's Disease about the long road to diagnosis and his creation of the website to help those with Addison's. listen MP3

"So much of my progress is directly related to my involvement with this site and all of you who have helped me more than any of you will ever know."

"The strength of your support is boundless and timeless."

"You are providing such a valuable service to all of us with addison's disease...thank you."

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Nizoral tablets may cause adrenal insufficiency by decreasing the body’s production of corticosteroids.

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