That's a board Question

[Unregistered]

People always ask me so what's the bracelet mean (in reference to my medic alert braclet.

I usually give them a look and tell them 11-hydroxylase deficency simple virilizing classical congenital adrenal hyperplasia and they I say "so, you know what that is ?" They say "no" and then I go on with my life.

The funny thing is that the last two people that asked me about the braclet did know what CAH was. One was a cardiologist and the other was a GP. One said," Oh ...that sounds like a board question." The other one said,"that's all over the boards."

Who says that doctors have no idea what this is ? : ) I was impressed with the GP. He knew the difference between 21 - hydroxylase, 11 - hydroxylase, and 17 - hydroxylase. It's weird you meet people and at the end of the conversation their parting words are that the are going to read up on your birth defect. In a way, I feel like a spokes person for CAH.

[Intersexed Princess]

I've also talked with some paramedics. You never know whose going to be drinking with you are the bar! They also asked me about the bracelet.

The one guy asked me what my illness was ? I'm like what ?? what did you say ?? I forget about the CAH and the surgeries after the second CAPTAIN & Coke and yes, that is the point ( can you imagine talking about a clitoridectomy at an AA MEETING ? I bet their is someone that does) I told him I need cortisone in an emergency. He had never heard about CAH but it was comforting to know that they carry Prednisone in their rig. I told him prednisone ...yes ...good, I need that crap to live. You have to give me extra in an emergency and get me to an ER QUICK.

Aimee

[Aimee]

I thought it is great that CAH is on their Medical board test. The one GP used the words cool and neat when I was describing CAH to him in detail. The GP then backed off and said," Oh, I'm sorry ...it's not neat for you, I'm refering to the metabolic pathways ...." I told him "no, it's ok ...it is neat when you put it in that perspective" He had the look of a kid in a candy store. You could tell that he was really interested in a respectful manner. The guy has a great demeanor, to bad he wasn't an Endocrinologist. Without me even asking he took the time to tell me about the drug flosomax (sp) that helps regain the lose of bone mass due to long term steriod use (in my case prednisone). Even when asked, None of the ENDO'S had ever suggested anything in concern to bone loss. One told me that it was good when I told him I was taking a multi- vitamin and I did that on my own. I have to learn about flosomax (sp) from a GP that isn't even my own. I even had to bring up having a bone density tests to both my EDNOs. I swear, I would write my own perscriptions and get my own blood tests done. Being a simple virilizer, I learned about adrenal crisis from the internet. Trust me it is amazing how much someone can vomit. When I was 18, a lady
Endo told me that I had to learn how to take a shot of cortisone. When I asked her why? She replied in a snotty voice, " Well, just in case your head gets stuck in a fish bowl, you will need to take your prednisone another way, DON'T YOU WANT TO LEARN HOW! I was so mortified about the way she a "doctor" talked to me like
that, I emotionally shut down and drifted through the examination with barely audible "no's" She never brought up "adrenal crisis" I never heard about that until I looked at the other message board. The nausea, excessive vomitting, the dizziness, massive sweating yeah, you just never know when.

There was one time that a blizzard/ snow drifts, the whole works was going on. I hadn't been able to get my medication and I wanted to see what would happen if I didn't take the medication. After all no one had said anything about the seriousness of CAH, I was just a lab rat for the residents , no one had ever made a big deal about the medication, not the doctors ..no one. I ended up having the flu, it could of been an adrenal crisis. Regardless, I didn't have the Prednisone to fight of the symtoms that I was experienceing. I vomited ...vomited ....vomited ...Later on my Dad's girlfriend confided that they thought I was going to die. They were never informed the importance of the medication. Just have that surgery done and pretend non of this exist but oh yeah bring her in form time to time so we can strip her naked and probe her.

Another time after work, I turned white as a gost, started shaking, got nauseauted later on, I started barfing and it to where I could barely move my mussles. I could shuffle when I walked, I couldn't pick up my hand when I was lying in bed. I felt like a clock that had run down. This time I had been reading about CAH on the internet and I took more Prenisone. I was under the care of and Endo that I HAD TO follow into his office to get him to answer my questions. In all the time that I saw him he never mentioned took watch out for an adrenal crisis.

[Glenn]

So is an 'adrenal crisis' for someone with CAH vaguely like a diabetic going into insulin shock? I mean in the general sense of your body shutting down because it's not getting some chemical it needs.

Glenn

[Intersexed Princess]

Dear Glenn:

I'm not sure but I want to compare notes with a diabetic just out of my own curiosity.The stuff that I was talking about in my prior posts happens so quick and your mind just hopes that your body will readjust when it gets more prednisone either by mouth or injection. My biggest fear is that I might wait to long or that the amount that I give my body might not be enough. Then things might be worse off then only having my genitals butchered by a well meaning surgeon.

OK, ON A HAPPIER NOTE. This stuff makes you relaize that the petty little things in life really don't matter.

Aimee