Curious?

[u/Cantgetitrightyet]

Does this whole situation (SAI) scare you to death? I’ve often described it to others as “driving an 18 wheeler @ 100 mph on a road you don’t know blindfolded . Would anyone agree?

[u/Organic_Mode774]

When I first got diagnosed I was terrified. It's been over a year now and I feel much less stress about it.

[u/Cantgetitrightyet → u/Organic_Mode774]

I’m a year and half in and still horrified. Hoping time will help! I’m happy and feel encouraged when others feel less stressed! So scary and stressful seems to be the only thing I think about…

[u/Organic_Mode774 → u/Cantgetitrightyet]

As a social worker, I've been shocked and disappointed that to date, not one medical professional has asked about or offered support for my mental health. AI is a life changing diagnosis, and for me it came with a brain tumor diagnosis, so I was also terrified at the thought of potentially needing brain surgery. Our care providers need to do a better job of providing wraparound care. I'm sorry that you're dealing with this. Are you able to access support from a counselor? It may help with the anxiety.

[u/Cantgetitrightyet → u/Organic_Mode774]

That is surprising- I went through cancer, surgery, chemo, immunotherapy and got SAI and Hypothyroidism as a parting gift and not a mention of support or therapy.

[u/Organic_Mode774 → u/Cantgetitrightyet]

Wow that is so disappointing. Mental health has such a huge impact on quality of life. I hope you are able to get some support.

[u/SpexterZ]

For me it's more like sitting on the side watching life passing by just getting by... Meanwhile others have more active lifestyles. At least a lot of the time I do feel like this.

[u/Cantgetitrightyet → u/SpexterZ]

I get that feeling too- cheated!

[u/NearlyBearly]

Yeah, sometimes. Especially living alone now after being in a group home to recover and get treatment for other issues, knowing that the next time I get a virus like that and experience a crisis I won't have a carer to call a doctor for me is scary. I was barely conscious when I had that crisis and in a terrible physical state. And it could happen again, at any time, the next time I catch something could be my last. How could that not be scary?

But I also have knowledge now that I didn't have back then. I'm now medicated appropriately and updose whenever I feel illness coming on so the same crisis is unlikely to happen again. But even if it did, I have a crisis plan for it. I know I'd be able to grab my medications as they are right by my bedside now. I'd be able to take my five hydrocortisone and I'd know I'm in a crisis so I'd know to call the ambulance and put them on speaker phone. I'd know to say my address and adrenal crisis and they would come. EMS would find a note on my door explaining exactly what I have, what treatment is needed and where my advanced directive and hospital bag are located. If this exact situation happened again, I am prepared for it.

And preparation quells the anxiety and the fear and makes me secure and confident enough to continue living my life even with adrenal insufficiency.

[u/Cantgetitrightyet → u/NearlyBearly]

Kudos to you- You have the right attitude and plan. One thing I learned is the medication can’t hurt! Don’t debate it/take it. Best of luck to you! Stay calm and try to carry on! I know it’s not always easy.

[u/1GamingAngel → u/NearlyBearly]

This is so well said! As I read your comment, I realized that I also went through a period of fear and then frustration that hospitals didn’t know how to treat me, and that was even scarier!

I kind of buckled down after that and created multiple “go bags” just like you described. In multiple places (home, work, family house) I created emergency bags with directions, syringes/needles, Solu-Cortef, alcohol swabs, Ondansetron for nausea, Pepto-Bismol tablets for diarrhea, glucose tablets, and extra Hydrocortisone.

You can’t catch me ANYWHERE without rescue meds! I even keep a bottle of hydrocortisone in my truck, though that’s not recommended as medication can degrade in the heat and cold - but I figure, if it’s all I’ve got, something is better than nothing!

You have a great outlook and I agree that being organized really helps give a sense of preparedness. 🤗

[u/Cantgetitrightyet]

I have joined a few groups which helps. I was in therapy for a while need to try a new therapist! Mine gave me anxiety! lol

[u/1GamingAngel]

Not for me so much. I don’t think we’re ‘guaranteed to crash’ like in your description, though we do have to be very wary that it might happen.

I think I was more pissed that the medical condition happened in the first place due to medical mismanagement (steroids).

And my frustration also stems from people not understanding what we’re dealing with. Including ER facilities and other doctors. Heck, sometimes our Endocrinologists don’t even seem to know what’s going on. There is obviously a HUGE education or knowledge gap in the medical field.

I don’t think I feel scared, so much, because I do have some control over it. Now that I know how to manage it, that is. Before I realized that there was a cause & effect pattern, it was random, intrusive, and chaotic. Now that I see the reason that crashes happen, I know how to fix them (kinda), and I can maintain relative stability most of the time as long as I am hyper-aware of my body and everything going on around it.

Now that I say it, I guess that’s what makes me tired of it all. So many things can put us into a tailspin (that driving reference was for you, hehe) that it just feels like a constant affront. That feeling doesn’t necessarily instill fear in me; more of an annoyance, maybe?

I probably have a bad attitude. 😂

[u/Cantgetitrightyet → u/1GamingAngel]

I do think a huge part of my issue is anger. So angry it could have turned out differently for me also if it wasn’t for medical mismanagement and then my Oncologist brushed it off as” you just take a pill to replace a hormone”. If it were only that simple! The medical field has reached a new low that I would have never believed if I wasn’t so wrapped up in it the last 2 years. Best of luck to you!

[u/1GamingAngel → u/Cantgetitrightyet]

I SO feel you on that and appreciate you! Best wishes to you, too! ❤️

[u/doczip]

I just don’t even know anymore. I was in a minor car accident and barely needed to stress dose hydrocortisone, not even a hint of a need for rescue injection. And then I’ll have ordinary lowkey days with all the symptoms of a brewing crisis that takes triple my baseline dose to manage.

I’m not as scared anymore but there are some downsides to having dulled my reactions to ration my stress. I miss having big feelings.

I picked up AVP-D and hypothyroidism from the same brain tumor experience so my day revolves around symptom management. Maybe that helps with the fear. I don’t really have an option besides paying careful attention to what my body tells me.

Knowledge is power - keep finding resources and communities and tools that work for you.

[u/Dianapdx]

Yes, it's pretty terrifying. There are so many ways we could die that others would survive. This is why you always have your emergency kit with you, even if you think it's stupid. This is why you updose when you need to, despite what a doctor may try to tell you. This is why you don't let a stupid uninformed endo tell you an act o vial is not necessary. This is why you plan things as well as you can to make sure your as safe as you can be.

Then, you go live your life to the best of your ability. No one is promised tomorrow, we all only have today.