Tag: Kallmann’s syndrome

Medication issues with Kallmann’s syndrome


When it comes to medical care in my state for Intersex people like myself, It’s okay but when it comes to getting my medications for my Intersex condition, that’s a whole other story. It just seems like the State of CT DSS won’t even cover for my Hormone medications, which can cost me $600 for a box of 60 patches. It’s a medication that I need and without them, I have an extremely hard time eating food. It’s why I am pissed that I am out of my medications and now I am having a hard time eating food because since I can’t smell anything, I don’t have the motivation or drive to eat at all.

It sucks in my state, that the only way I get priority is if I speak hispanic, illegal, Trans or a DACA. My state doesn’t even care about it’s state residents and for me, my state doesn’t care if I get my medications. All Connecticut cares about is if I am starving myself to death rather than to get the needed medications that I need to eat, live and survive. It’s why being an Intersex person who has Kallmann’s syndrome, it sometimes sucks when I have to fight the state to even cover my medications a hispanic, illegal, Trans or a DACA get everything before me.

It’s why, right now, I am not eating very normally and I am just eating either once a day or to none at all. It sucks because I don’t have the motivation to eat and without my testosterone patches, I don’t have the drive to think about food and Eating. It’s why it’s hard one me because I am no working right now and I don’t have work HMO that can cover for it. It really sucks that being an Intersex person with Kallmann’s syndrome, I have to deal with a State that won’t even cover for my medications that i sorely need to eat and live.

Why are there no support groups for Kallmann’s syndrome

The one thing that often sucks as an Intersex person and someone who has Kallmann’s syndrome, it just seems like every Intersex condition has its own network of support groups and people that they can talk to and relate to. Every Intersex condition from Turner’s syndrome, to AIS to even Klinefeltners syndrome has its own network of support groups. It just seems like for Kallmann’s syndrome, there is no network of support groups for people like me. It seems like having Kallmann’s syndrome is liken to be the rarest of rare and having a rare disease and a rare medical condition, often times makes it very hard to connect with one another and talk to another person who has Kallmann’s syndrome.

It’s why, it’s often difficult for me to deal with Kallmann’s syndrome, simply because I don’t have anyone else in my area that has Kallmann’s syndrome and can understand what it like and what I am going though. It’s sad because having a rare disease and not having a support group or support network, puts a huge toll on my life and on my issues. It’s bad enough that I have Kallmann’s syndrome and Vitiligo but it’s worse because what I have, I don’t have a support network of my own.

I have often times thought about creating my own support network and support group, but I have serious doubts that I can get it off the ground. I like the idea of having my own support group and network for those who have Kallmann’s syndrome but I know that’s a huge challenge for me and I know it’s never going to happen in my lifetime. I’d like to see the day, when I can create a support network and a support group for people like me who have Kallmann’s syndrome. The sad reality is that it’s not gona happen in my lifetime.

It’s why I am one of the few humans on this planet who have two rare diseases such as Kallmann’s syndrome and Vitiligo, but don’t have a support group or a network of people who can understand and relate to what I am dealing with. It’s why it gets real lonely when I am dealing with two rare diseases and I don’t have anyone to talk and relate to. Which is why, people often ask me how I deal with having two rare diseases and not have a single support group or network to lean on. I just manage on my own and just work though my two rare diseases on my own and completely by myself.

Friends are so damn hard to come by

One thing I often struggle as an Intersex person with Kallmann’s syndrome, deaf person and someone who has Vitiligo is making friends. It’s really rough for me in my 40’s to make any REAL and lasting friendships. It’s often times very depressing and down right lonely, when I don’t have any REAL friends that I can hang out and socialize.

At my age right now, I sometimes feel like I am living on an isolate island or some remote, isolated part of Alaska with no Human connection to the outside world. It’s really tough for me because when I want to do something, I often times have to cancel my plans, mainly because I don’t have friends to go and hang out with. I use to have friends in my teens and early 20’s but then in my 30’s, they all started to fade away from me. Now in my 40’s, I have very few real friends and most of my friends are online based.

As sad as it sounds, I am realizing that in my 40’s I am being more isolated and more alone than having friends that I can go hang out with. Instead I am feeling as If I don’t have a single friend who I can go hangout and chat about life. Sometimes I feel like I am left by myself in this world. It’s really depressing when I want to do things like go Nude camping but I don’t have a GOD DAMN single friend that can come along with me. I mean it’s depressing that I am missing out on all the damn things I wanted to do, just because I don’t have a companion or a buddy to go hang out with. It’s sometimes the source of my depression that I don’t bother to talk openly about. I often times keep it quiet to myself because I know I don’t have anyone that I can reliably talk to.

It’s why, with all my issues I have, from my Intersex condition, deafness and having vitiligo, the biggest one I have is my loneless and it’s often times very depressing for me to deal with. It’s why sometimes when I am this depressed, I don’t bother to eat at all and all I do is drink to drown out my depression and the fact that I don’t have any friends or anyone to chat or hang out with. It’s why when I am out with others, I tend to sit away from the crowd and sit by myself because I know they drain my battery and they don’t even see me at all. I stay so damn quiet that, no one doesn’t notice me until it’s too damn late.

It’s why being alone is sometimes so damn depressing, that I don’t even think about it unless it hits me very raw at the nerves. Which is why I don’t even eat when I am depressed and I sometimes just simply drink, to drown out the fact that I don’t have friends or the social life that I dreamed of. Sometimes I often wish I could hide from the world and stay very hidden because I know the world wouldn’t want me around and no one wouldn’t want to deal with the shit I have to deal with on a daily basis. It’s why when