In case you missed it, Action for Adrenal Awareness released May's video on YouTube. For May, the topic was The New Normal. When diagnosed with a chronic health condition that can quickly become life-threatening, the definition of "normal" is quickly redefined.
Kim, Debby, and special guest Susie all gave input and insight into their "new normal," how they have adapted to with Adrenal Insufficiency.
Finding the New Normal
Debby was diagnosed with Adrenal Insufficiency in 2002. Kim was diagnosed in 2013. Susie was diagnosed in 2015. But for each of these ladies, finding their "new normal" took a bit of time.
Susie states it took her about a year. For the first nine months after diagnosis she was faced with a hospital admission every three to five weeks. This was mainly due to improper steroid coverage. At the start of her diagnosis, her doctor advised her to just take 20 mg of HC, once a day. Through her own research, she realized that this was far from optimal. She tried many different types of steroids and dosage regimes, but always ended up back in the hospital. During one of her hospital stays, she and her medical team realized that she responded better to solu-cortef injections instead of hydrocortisone tablets. She now injects herself five or more times a day with solu-cortef instead of swallowing pills.
For Debby, her adrenal crisis leading to diagnosis caused significant brain damage, which affected her memory. She took about two years before finding her "new normal." This included accepting her limitations, learning all that was still possible, and figuring out what dosage schedule worked best for her. Acceptance does not happen overnight.
Kim says it took her about a year before she accepted her "new normal" with just adrenal insufficiency. But it took her much longer to process the changes that came with that new normal.
It is normal to grieve. Please remember that this process takes time.
Defining the New Normal
Susie is still able to work full time, but she knows that she would be unable to achieve her success without the support of her husband. Additionally, her kids are grown and out of the house, which she admits makes things easier on her. Three to four nights a week, she does fluids at home. She can still manage activities, but she must plan for them in advance and try to not push herself too far.
Debby notes that to the people who do not know her, she looks completely normal. She often hides how she is truly feeling. But she does rest several times a day. Her life is now centered around her family, her pets, and her baking business. Her husband also does a really good job of stepping up when she is not feeling well.
Kim admits that her life has changed drastically, but not necessarily just because of her Addison's Diagnosis. Before, she was always busy, always go-go-go. Now, life is a much slower pace. She does what she can, and tries to remain positive.
Coping with the New Normal
At times, Susie needs to have a good cry. She tries to follow "mind over matter," and definitely relies on her faith, family and friends. But there are days where she just curls up in bed and has a long, good cry. But she does not dwell in the crying phase. She wipes the tears away, picks herself back up, and moves on. She figures out what she needs to do and how she should do it. I have written about the benefit of that mindset previously here
Debby states that it is perfectly normal to be depressed about this "new normal." She encourages us to not dwell on the past. Do not look back and wish you could be healthy again. Take every day a day at a time and look forward. Once Debby became stable, she was able to put her Addison's Disease more on the back burner. It is something that she must be aware of, but it does not define or control her. Addison's is not who she is, it is just something she must deal with.
Kim would like to remind us that it is normal to go through the grieving process. There is the bargaining and there is the denial. There are the emotions and the feelings. And then there is the acceptance. However, we will never have closure. Be prepared to revisit all of the stages of grief multiple times during your journey with a chronic illness. And having a good cry is extremely healthy.
Like many of us immediately after diagnosis, Susie made it her mission to learn as much as possible about this disease. She is the support group coordinator for her local NADF chapter and an admin for a Facebook support group. She wants to prevent unnecessary deaths, and she can through education and awareness.
Debby wants to use her life story as an example to give hope. She was comatose for almost two weeks and was not expected to ever recover. And yet, she did. She was given a second chance at life, and she will always appreciate that second chance. She uses it to love and care for those close to her. She is also passionate about helping others who are struggling.
Since diagnosis, Kim has discovered more meaning in her life. She has been given a different perspective. She understands the importance of making the most out of every day. She wants to continue to help others and to pass on the beauty of our community.
Susie is grateful for the advocacy work that we are doing. Debby would like to remind us that we do deserve to have a good life through more research and more awareness within the medical community. We are all unique and we should never stop striving to find our new normal. We can do this through education and continuing to fight to be the very best we can be.
Kim reminds us how we are all very different and we are all in different places in our diagnosis journey. And yet, we can continue to help each other out. Life can still be good and meaningful. Purposefully work towards finding your new normal.
Did we forget anything? Please comment below!
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Labels: AFAA, Awareness