My apologies for taking so long to write. After moving out west 2 years ago, my time has been divided between writing, two part time jobs, my very first dog and a new relationship.
So much has happened since my surgery 3.5 years ago. Starting this blog has been one of the best things I've ever done. I knew when I got Conn's I would end up helping others, I suppose I am a "connector," as my network savvy friends call it. Had I not used my love of writing as an outlet, I can honestly say, I would not be where I am now. Taking control of your illness is not only empowering, it's vital to your own personal healing journey.
To the many wonderfully strong, brave people who have contacted me on this site through comments and emails, thank you. I'm glad I have helped provide information, at the very least, support for your journey. My apologies for not answering all the comments, perhaps one snowy day I will have time to do this. For those who have contacted me directly by email or phone, I thank you for being strong to advocate for your wellness. If anything I have learned about this disease, you must be as pro-active as possible, or you may get lost in the heavy endocrine verbage and the seemingly endless road of weekly tests.
I have tried to keep this blog professional and without too much personal emotion. I did this for two reasons, first because I don't like to divulge too many intimate details of my life and second, because if I did, I fear those emotions would take over and cloud the purpose of my blog's objective, which is to help others.
So what's been going on health-wise since the miracle surgery? I am technically healed of hyperaldosteronism, but now have severe hypoglycemia. It's to the point that all my friends know to have protein, water or electrolytes on hand when I'm around. I crash easily and am still learning about diet. I have cut out glutens, avoid highly sugary food (although adore cake and ice cream, so you know this is tough), ration the morning coffee to every other day, and have 1-2 glasses of wine at the most if I go out. If I break this pattern, I suffer and have only myself to blame.
I often experience nausea which I never had before, and get a little depressed/agitated if my regular exercise routine is disrupted. Physical exercise is vital to me now and I seem to have a higher tolerance physically than dealing with emotional stuff. I didn't sweat for 2 years and now can't seem to stop!
On the emotional front, I get tired easily when dealing with tough stuff, like high drama neighbors, bosses and family. Fatigue is still the enemy that I often battle. Stress, including emotional trauma, really levels me, far more than ever before. I chose flight over fight, even when I know the other person is being unrealistic or a manipulative jerk.
If any other post-surgical people encounter these issues, I would love to know. I have my suspicions that one adrenal can only do so much... an imbalance to the 'fight or flight' command center has to have its consequences.
As far as the "girl stuff", I'll spare male readers the discomfort of having to read about not-so-fun details and suggest that my Conn's sister's contact me directly at my personal email if they have questions: clangrall@gmail.com. My smarty pants doctor in Santa Fe has a philosophy on this... she believes there is a direct connection between the reproductive system and the adrenals, and I am starting to agree with her when I think back to my former reproductive hell days of miscarriages and Menorrhagia.
Regardless of these little disruptions, I continue to live my life to the fullest, staying in the present, trying not to get caught up in the past, or look too far into the future. I feel lucky and know this disease happened to me for a reason.
Conn's patients who are given the gift of surgery (yes, it really is a gift) to remove the adenoma/tumor will no doubt see an improvement in their lives. But what's around the corner remains to be seen. As long as we keep the lines of communication open, we can support each other while learning new ways to cope with our post-surgical lives.
Whatever I learn or experience, I will post. Here's to taking control of your pain and life... Don't stop empowering yourselves.
~Carole
1 comment:
Appreciate the update, as always!
My adrenalectomy was almost a year ago. In contrast with your experience, it actually resolved my (severe) reactive hypoglycemia - I rarely, if ever, get that panicky "feed me NOW" feeling that used to happen every few hours.
For the first few months after my surgery, I felt like I was a lot more sensitive to stress/drama than I had been prior to the surgery, but this seems to have evened out.
As for nausea - I've always had a touchy stomach, which in the past had pretty much been diagnosed as gluten, fructose, and lactose intolerance. I've been gluten-free since the 1990s and sugar-free (that means all sugar, no honey, no fruit!) since 2003. And I've minimized all dairy except for cheese, yogurt, butter, and half and half - all of which a nutritionist once told me did not contain enough lactose to cause problems - all of my life. While I didn't eat them excessively, I didn't go out of my way to avoid these things - if, say, something was sauteed in butter, I didn't question it.
However - following the surgery, I felt like my stomach was really acting up again. One thing led to the next, and I decided to eliminate ALL dairy. And guess what? Problem solved. My doctor suspects a casein allergy, which is very common in gluten-sensitive patients.
You mentioned avoiding gluten, but you also mentioned a love of cake and ice cream... In my lifelong experience with food intolerances, one thing I've learned is that for it to work, it's an all-or-nothing proposition. If you're sensitive to gluten, you need to ALWAYS avoid it - no cake "once in a while." If you're sensitive to dairy or sugar, same thing - no exceptions for ice cream.
Anyway, figured I'd mention it in case you wanted to give it a try. Cutting ALL dairy out of my diet has made me feel like a new person - I have a lot more energy and can finally stop blaming not feeling well on being a mono-adrenal, since I'm no longer not feeling well!
Best of luck to you.
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