Celebrating Rare Disease Day 2020

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Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

For #RareDiseaseDay we invite you to join us with the
AI Butterfly Challenge, where we are raising our hands for adrenal disease awareness.

Our objective is to flood social media (pinterest, instagram, facebook and twitter) with our butterfly photos to spread awareness on ALL ADRENAL DISEASES!

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Rare Disease Day is February 29, 2020

To participate- Take a photo with your hands in the shape of a butterfly and upload to social media using the hashtags #RareDiseaseDay and #AIButterfly!

You can edit your photo with the template download here!!

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Or, if you’d like us to edit your awareness photo send your photo to adrenalalternatives@gmail.com

 

We hope you join us in raising awareness for all adrenal disease!

Cortisol Pumping Survey

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Calling all cortisol pumpers!

Adrenal Alternatives Foundation is conducting research on the current method of cortisol pumping in order to further technology developments to manage adrenal insufficiency.

We have created a short survey to collect information for future advancements.  Please click the link below to participate in the cortisol pumping survey.

 

https://docs.google.com/forms/d/e/1FAIpQLSeSrF2vsx9zlYtsHKumTOrTw9cqg8vZmnliRqUcEVfWKOHoFw/viewform?vc=0&c=0&w=1&fbclid=IwAR1L88KDRMdOZBSHrwSl6jkYO7NM2rEYod_8s5sgTZLLsKAMAliFhKRseNw

 

Thank you for your continued support of Adrenal Alternatives Foundation.

We cannot further our mission of Education, Advocacy and Encouragement without members like you!

 

 

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Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. EIN: 83-3629121.  All donations are tax deductible.

Celebrating Rare Disease Day

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

RarePromo.jpg

For #RareDiseaseDay this foundation is running the AI Butterfly Challenge, where we are raising our hands for adrenal disease awareness.

The butterfly is the symbol for adrenal insufficiency, which is why we have chosen that as our hand gesture for this awareness challenge.

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To participate- Take a photo with your hands in the shape of a butterfly and upload to social media using the hashtags #ShareyourRare and #AIButterfly!

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Our objective is to flood social media (pinterest, instagram, facebook and twitter) with our butterfly photos to spread awareness on Addison’s disease, Cushing’s disease, Congenital adrenal hyperplasia, Sheehan’s Syndrome, Hypothyroidism, Conn’s syndrome, pheochromocytomas and all forms of adrenal insufficiency.

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Please join us by raising our hands for awareness with the AI Butterfly Challenge!

 

 

If you would like your photo edited with the official Adrenal Alternatives image, please send us your photo to inspire.fire@aol.com and we will edit it for you!

Near death experience was a call to life- Jen’s story with adrenal insufficiency

February 23, 2017 will be a date that will forever be engraved into my life and the lives of the people closest to me. It’s the night that I died…three times…and came back to life to tell my story.

It was a cold, February night. I had been under a tremendous amount of stress. My ten year old had suffered a major concussion at school a couple of weeks prior. That led to several doctor’s appointments, a CT scan, a trip to the children’s hospital when his symptoms got worse, communicating with his teacher to get homework that he could safely do while he was at home recuperating, and a group of unneccessary text messages between his father and me, arguing about his treatment plan and the plan for our son to return to sports. Living with Adrenal Insufficiency has taught me that when I’m under any emotional or physical stress, I need to take extra meds in order to cope like someone who has healthy, functioning adrenal glands. However, when my cortisol levels drop to a certain level, I can’t think clearly and I don’t realize when I need to take the extra life saving steroids. My husband recognized it, but it was too late.

There is a block of time that I absolutely don’t remember. That block of time started right after I told my husband “I don’t feel right…” I was standing in the kitchen and I had just read a text message that apparently dropped my cortisol levels to a dangerously low level. My husband took one look at me, and told me to come lay down and he would get me some meds. To be honest, the meds I truly needed was my Solucortef Emergency Injection. However, it was sitting at the hospital pharmacy….all because…one, I didn’t think I truly had “that” bad of a case of Addison’s…I saw other people posting in our groups and they were constantly in crisis and having to inject, but that just wasn’t me. Also, it was $52 to pick it up and we simply could not afford it at the time. Please read that again. I could not afford my life saving injection that literally could have and would have SAVED MY LIFE!!!!! I started to walk towards him, and I collapsed in the middle of our dining room, not breathing and unresponsive. My husband told my ten year old to call 911 and he immediately started CPR.

It took emergency responders 14 minutes to arrive to our house. They attempted to revive me with no avail. I was in cardiac arrest. They couldn’t locate a good IV spot, so they chose to perform an emergency procedure known as an IO (Intraoasseous Infusion) where they drill into a person’s shin bone and are able to get an IV started. The problem is, the EMT who performed the IO drill led too far into my shin, so all of the medication that they pumped into my system went straight into the tissue of my leg. Since I was not responding like I should with the medication, they kept giving me more and more, not realizing the harm it was causing. A brand new EMT looked at my leg and asked if my leg was supposed to look the way it did. I apparently had compartment syndrome and my leg had ballooned up. Things suddenly took a turn for the worse.

My husband was on his way to the hospital, when all of a sudden I went into cardiac arrest again and my “spirit” visited him in his car. According to him, I told him that I love him and I was saying goodbye. Being the strong-willed person that he is, he told me to get back into the ambulance and start breathing. Although our wedding vows did not include “thow shall obey,” I left his car and started breathing in the ambulance. When he arrived at the hospital, he was met at the door by the hospital chaplain, who urged him to call my parents, as the doctors did not expect me to live. My husband was notified that I would require emergency surgery and they needed him to sign a release for them to operate. Knowing what surgery would do to my body, he insisted that the medical team give me 100mg of Solucortef prior to the surgery. It then became a battle of who would give in first. The person trying to get him to sign the release told my husband that I would die if they couldn’t operate qickly, and he told them that I would die if I did not have the emergency steroids on board prior to the surgery. In the end, my husband won the battle and after I was given the Solucortef, I was rushed into surgery.

love from all of us
Continue reading Near death experience was a call to life- Jen’s story with adrenal insufficiency

Is this pain for a reason?

I always wonder what causes my pain. I have it on a daily basis, but can never really pin point why I have it. I can come up with 100’s of reasons why I think I have it. I slept wrong, I worked out, I was stressed, I had to drive around, I ran errands, I ate something I wasn’t supposed to, I ran into an ex, my kids were driving me crazy, my husband and I got into a fight, blah, blah, blah….
Any one of these can cause me to have a flare or a crisis. But why the pain?
Our body is constantly at war with itself, which is a huge pain. It is battling against everything inside itself and on the outside. On a healthy person, this can take minutes, maybe an hour to fix itself, but with us…. It can take hours or it could take days.
I have gone to bed the last 2 nights in so much pain. It is easier for me to ignore it during the day. I can distract myself by moving around, but once my body lays down and tries to relax… That is when the pain can get so bad. I can’t get comfortable because everything hurts. I want to rip off my own skin most of the time, just to make the pain stop.. Not that I would actually do that.
Last night, while laying in bed, my body had that feeling you get when someone is poking you non stop and it gets really irritating, but you can feel it all through your body and you just want to punch the person…. I can’t punch the person and make it stop. All I can do is try to fall asleep and hope that it doesn’t wake me in a few minutes.
I often wonder, why God is making me go through this. There has to be a reason, and I know that he has one. I would just like to know what it is, so I can feel better about having to go through this. I want to be inspiring to others, but it’s so hard when you need the inspiration yourself. It’s hard when you spend days in bed or on the couch or just in your home because you are way to tired to do anything. That gets depressing and is a hard cycle to break.
Everything that used to sound fun to me, makes my skin crawl now. I hear all the ticket giveaways on the radio and start to think that would be fun, but then my mind goes to.. I would have to get dressed and there will be lots of people there, someone might be sick and they will touch me and then I’ll get sick. Will I be to exhausted to walk around or stand the whole time, should I bring my wheelchair just in case, are they going to have food there that I can eat, how late will this event be….. AHHHHH!!!! Do healthy people think like this?? I sure didn’t when I was healthy.
We have pain… daily. We are fatigued… daily. If you have your disease under control and managed… I give mad props to you, because 4 years into this.. I don’t. I feel like I start to gain control and then something else pops up. I see all these other Addisonians working out all the time, working, enjoying life with friends and family, and I wonder how they do this. Why is it so much harder for me? What am I doing wrong? Every.. body.. is different. Everyone experiences their illness in another way. So don’t let that get you down or discourage you. Your body is processing the disease differently and there is nothing wrong with that.
Keep fighting daily. Keep searching for answers. Keep raising awareness. I feel it’s coming soon.