Twelve Months of Testosterone

Wowsaz! It’s been August since I last had wrote a piece. Quite a few things have been happening since then and it’s not that I haven’t wanted to write something. I have been writing elsewhere and mostly responding to emails from people who have found my video interesting. Funny to think that a video from me about Klinefelters Syndrome has attracted over eight thousand views on YouTube and many comments from people just like me saying that it was great! Makes me feel good inside that people are getting something out of it!

Testosterone

Twelve months have gone by in a flash and I thought it would be apt to post this piece on 12/12/12 @ 12:12 exactly! I’ve been on Testosterone now for twelve months and I wanted to document the changes:

  • Increased energy levels
  • Increased libido
  • Increased ability to focus / concentrate
  • Noticeable change in positive demeanor
  • Facial Hair (not quite a beard – but more than bum fluff!)
  • Body Hair (light)
  • Confidence Boost
  • I haven’t been to the gym yet – although I plan to start going in 2013 as the next change for me is getting fit & attempting to gain muscle mass!

Funny thing is I have noticed some other changes in my general character which I can attribute to the confidence boost. I mentioned to a friend once when we were out having a beer that it’s almost like people can sense the increased amount of Testosterone flowing through my veins – it’s like men instantly want to fight me & women… well women just want to bite me!

Recently I’ve got myself into a few situations, one resulted in me being banned from a certain establishment in Guildford for being confrontational! Prior to taking the treatment I would have just walked away from the situation or hid behind the power of my friends – in this instance I decided to stand my ground against someone much bigger than me – which resulted in me not being allowed to go back to that place. I’m happy that I stood my ground, yet it scared me a little bit how I have changed. At the time, I felt a confidence rush – I guess with great powers come great responsibility and I have to learn to master this new found confidence without it resulting in a negative outcome.

Moving on… my good friend and work colleague came over towards the end of August and we were debating the pitfalls of our age and single life – would we ever be like our other responsible friends and find a relationship. We joked about online dating and over beers began to look at the various catalogs of the opposite sex to see if any would take our fancy. It was decided that I would trial a service for one month – and I’m glad I did!

It was getting towards the end of the month and I had been on a few dates with no amazing outcome, so I decided it was time to remove myself from the service and go back to the single life. Just I was pressing the delete profile button – an instant message popped on my screen… “hello” – well.. I was shocked and thought okay this is weird! Checked out the profile , read the introductory text and thought to myself – this must be a joke. This lady is hot! Really hot and it got me excited! So I decided to respond with the usual “how are you?”

The response that I got back was a bit strange – “I have a problem, can you help me?” – eek, I thought! Turned out that the lady in question didn’t know how to make her SKY TV remote also control the TV. I thought to myself – I KNOW HOW TO DO THIS!!! So I began over messenger to give her step-by-step instructions – to an almost instantaneous reply – “Wow, you are my TV hero!” We swapped numbers and that very week we had our first date, which was on a Wednesday – an awesome Wednesday!

Everything about the date was perfect. I had forgotten all that stuff in my head about “will I ever be able to find someone to love again with this condition?” – it just went and I was for once enjoying the moment. Then I had another one of those confidence boost moments, this time instead of it being confrontational – it was a moment of me being forward – diving in and going for the kiss. It could have ended really badly – but it didn’t , she replied with “wow” (yes she did!) and that she wanted it to happen and was glad that it did! I was so happy! We left the bar (it’s now my favourite bar in Soho) said our goodbyes and I think for the rest of the week I had a perma-smile for once!

Monika

Several dates, months later and we are now seeing each other regularly and recently we have visited each others parents houses and everything.. well everything is just perfect – another reason why I haven’t had an opportunity to write much here is that I have been enjoying her company! ;D

Now with all relationships come questions about what happens next – and where we go on our journey. Recently we had a discussion about “plans” for the future and I responded with “I don’t have a plan!” – I’m on a journey. I received a perplexed response – “well you have to have a plan” a notion of where you want to go in life and what you want to do with it. Looking back over the years I had plans, I had great plans – and through this planning I have only ever experienced disaster. I think at the time of the discussion I wasn’t able to articulate how exactly I felt and I mentioned to her last night that I will have to write it down – then maybe she can understand why I never plan for the future, and why I live in the spontaneous world known as Sheridan-Town!

Rewind back to 1998 – I was a university, I met a girl (as you do) & created a plan! The plan was we would move in together, and save for a house – with the hope of one day getting married & settling down for a family. At that time I had no idea about the Klinefelters Syndrome & the thought of having a family was only part of the plan somewhere down the line. So we got engaged, bought a house near to Brighton and continued on the plan – my Dad & his wife and my little brother came to visit us in our house and well this is where the plan drifted off course. My dad had a funny turn whilst visiting us and he was diagnosed with having brain cancer – he had to have several operations whilst in my local area to remove the tumor from his head. My whole world fell apart during this time and the plan went to shit. I neglected the girl and she found love interests elsewhere at work – which caused us to split up, me move out of our house, find a new job and well… start again. This all came after my Dad had passed away, and the road leading to his departure. I couldn’t cope with what was happening around me – I was a mess. Today is Dad’s birthday – every year on the 12th December I remember my dad – rather than remember the day he left us – I remember the day he was born. I miss him dearly!

Dad

So.. I moved on – I spent the next year or so living the single life – I didn’t have a plan – I just wanted to live spontaneously. Losing Dad made me realise that you can’t plan for the future as you don’t know what is around the corner – what happened to Dad was really sudden, no one expected it – it just happened & we all had to deal with it and remain strong.

About 9 months after living on my own after the break-up I somehow managed to get myself into another relationship – still unaware of the Klinefelters at this time. Thought I was happy – had a few hiccups along the way but managed to pull through them and create another plan. The plan was that we would save for a house, so we downgraded our lush town center apartment with pool, gym etc and I would also get rid of my sports car! 🙁

RX8

We decided that the plan would be unconventional – we would get the house first, then look at children, then get married (as you do) So we moved into a rented house and this is where all the problems started! We started to try for children – and had no luck – so I went to the doctors and this is the time in my life a year or two ago when the Klinefelters was discovered. It was a massive shock for both of us – and again the plan fell apart! I guess she wanted a child, a house and follow the same path as all of her friends. So we split up and then three months later I find out that she announces to the world that she is pregnant, moves in with another guy (buys a house) to live happily ever!

I guess these two examples illustrate the way I feel about life planning, ends in some sort of disaster. Yes I found out about the Klinefelters – but then am I better off? I guess I am for being able to change the way that I live and feel much better for it by taking the medication – but now I have a zillion thoughts running through my head whenever someone mentions a plan. This new relationship is quite different to the others, I know about the Klinefelters now and I have had the conversation already. It’s not going to be easy to consider having a family – and the one thing that scares me the most is that we might try it, we might plan for it – and then it might get all too much… going to park these thoughts – something I’ll come back to in another post!

Following on from creating the video I have had many people write to me asking me questions about what it was like growing up. Many teachers, parents and even people with an interest in the condition have reached out to me about my opinions. I’ve had to stress to them that at the time I did not know, my parents did not know about the condition so I can only look back on certain situations and apply the knowledge I have now and how that might have attributed to the way I was feeling at the time. Therefore I have decided to collect some thoughts together and write about what it was like growing up – till the present day. I was working on a book called “Living with the X” – this is still going to be the title, probably going to pan out slightly differently to what I had originally thought.

Another colleague and friend recently designed an amazing illustration of me – and I asked him if I could use it as the cover of my new book. It’s a really cool image and I think it represents me well – and will stand out on a shelf when someone walks by:

Living with the X

In addition to this, he has also created a new logo for the project and it’s really cool! So just one thing to say – thank you David McDonagh 😀

I’m fortunate to have a good job and work for an amazing creative company – each year we get to take a day out of work and either volunteer or raise money for charity. I thought about turning Project 47xxy into a charity. Whilst it is something that I will want to do eventually it’s not something that I can do on my own and need help from people around me to get it off the ground. I came up with an idea to cycle from London to Paris to raise awareness for the condition and I would like to do it on behalf of the Klinefelters Syndrome Association Looking at doing this next year and it would be great if colleagues & friends would join me in this awareness adventure. Our company appears to get behind other great charities like Movember, Cancer Research, local charities and I’m hoping that they will support me.

As we are approaching the holiday season I wanted to ask a favour from all of you who are reading this – one of the research papers I contributed to recently struck a chord with me in the final statement, can you do this for me:

Ask friends at the your next dinner party or some of the members of your family what Klinefelter Syndrome is and you are almost guaranteed either a nonexistent or incorrect answer. Ask yourself and ask others: is this response really acceptable?

Happy Holidays!

Dan

Ich bin Ihnen sehr dankbar

I’ve just come back from a week working away at a games convention in Cologne, Germany called Gamescom. So I thought it fitting that I title this blog “Ich bin Ihnen sehr dankbar”. This translates as “I am very grateful!”

I am extremely grateful to everyone who has supported me in setting up my project to help others like me. Two months ago I decided to stop being depressed and do something that would really make a difference to the lives of others – channeling all of my energy into an awareness campaign and raise some (£) pounds in the process.

I managed to raise $745 of my $20,000 target mostly through the kind generosity of friends, colleagues and received many pledges of support from the community that surrounds me in my job & for that I am extremely grateful.

These people all deserve a special mention:

Ryan Sheridan
Brooker
Jun Yoshino
Michelle Dewhurst
Lee Williams
Hannah Kitson
John Sylvester
Keith Pape
Stephanie McAreavy
Nick Silversides
James Dean
Kieran Semrau
Tom Wallis
Richard Burley
SMBayer
Nye Davies
Mark Reid
Anonymous (Thank you secret person!)

So what happens now? I’m working with a designer to produce a new information booklet about the condition that I hope to send out soon. I’m planning a fundraising evening to celebrate the launch of the charity & my new book – “Living with the X”. I’m in talks with various publications to do features on the condition & I am planning a London to Paris cycle ride with the aim of raising more funds to sustain the charity ongoing. It’s looking like the end of March/April 2013 and I would really love for you to join in — comment below if you are interested!

You can keep up-to date with the project by following me on twitter as @project47xxy & watch my video blogs on Vimeo here – please don’t stop sharing these videos, and if you happen to have any “celeb friends – as I know some of you do – ask them to do a cheeky tweet… I’ll make them a bacon sandwich & a good northern cup of tea! :D”

Thanks,

Dan

I’m Batman, seriously!

So I’ve done a video for Project 47XXY – I’m not really Batman that was just a way to get your attention! Did it work?

Thanks to everyone who has contributed to the cause or pledged support it’s really appreciated!

Expect more videos from me over the next few months!

Dan

Project 47XXY Indiegogo

 

Massive thanks to everyone who has contributed to Project 47XXY on Indiegogo.com. So far I have raised $260 and received many pledges of support from those around me and I am very grateful.

If you do one amazing thing this week then go here & use the share buttons on the page to help me raise awareness about the condition known as Klinefelter’s Syndrome.

You can keep up to date on the project by following me on Twitter. If you have a story to share I would love to hear it – you can send me a message from here.

I really appreciate your support in helping me to raise awareness of the issues and implications of individuals diagnosed with Klinefelter’s Syndrome.

Dan 🙂

Crossroads

It’s been a few months since I last put pen to paper and wrote down the thoughts swirling around my complex mind. I have given myself time to think about how best to put things without causing offense to people concerned and it’s been hard, it’s been REALLY hard! I think I am ready now.

Rewind the clock back a few months to the month of April. I had been suffering from the stresses and strains of modern life and found out a few things about someone that I used to care for. On top of that I had my annual review at work to look forward to and I knew in my heart of hearts it wasn’t going to have a happy outcome.

I had been finding it really difficult to sleep and often would go for a few days without uninterrupted sleep. This happened a few times prior to the day of my review. I also had an upcoming appointment with the specialist to check up on how I was doing on the ‘T’ and to get the usual blood analysis done to make sure I am on the correct dose.

So the day of my review came along and I got told some great things that I was happy about and then I got told the bad things towards the end – it was that inevitable ‘however’ moment when your heart stops you get sweaty palms and you know that something is going to come out of someone’s mouth that you were expecting but you didn’t expect exactly what was going to be said.

Now I’m sat in a room listening to all the things I could do better and thinking to myself that the past 9 months haven’t exactly been plain sailing for me. So one does have to take that into consideration.

I wonder again to myself why did I not just buckle under the pressure back then –because that’s not what I do. I soldier on and keep on going until I cannot go on anymore. I had now reached this point & afterwards I felt like shit – I couldn’t focus on my work, people were talking to me and non of it made sense. I had to get out and it had to be quick.

I ran into the toilet at work and had a moment. My hands started to sweat I was finding it hard to breathe and I slumped in the corner with my head in my hands and thought “why the fuck is this happening to me – I tried and tried and gave it everything and now I’m failing at work too!” I got my stuff and left the office – I don’t think people realised I had left.

At first I thought it was the medication messing with my brain – I had read online that some people have had really bad mood swings and others adapted to the treatment with ease. I was looking for something to blame other than myself – I called the doctors as I was in a bit of a state, my first encounter of a panic attack and they made me an appointment for the next day. I also realised that I had an appointment with the specialist the next week so I was anxious to see them and explain all the things that I was encountering.

I went to see the GP the next day and explained a lot of what had been happening and the lack of sleep that I had and the lack of focus / concentration. The GP reassured me that it wasn’t the ‘T’ and could be any number of things most likely caused by stress and the situation. I told her that I couldn’t sleep and my work was being affected and I had been waiting for a few months to be referred to see a genetic counselor. The GP was really good and took time to listen to all my issues and I must have been in the room for about 30 minutes talking to her about taking the ‘T’ – the past 9 months or so, work, previous love interests, moving and we both agreed that I was suffering from stress. The GP decided to refer me to a specialist so that I could talk to someone about everything, she even said that she wasn’t surprised after everything I had been through that it was affecting my day to day. I asked if I could have something to help me sleep as it was day 3 of 4 interrupted days of sleep – and so she prescribed me with some tablets. I only took one of them and put the rest away as I’m not a big fan of talking tablets for the sake of taking them – it did knock me out and I did feel a lot better the next day.

It’s now the day of my hospital appointment and I’m sat in the waiting room looking at all the people looking at me trying to work out what is wrong with each other. Within about 30 minutes of my appointment (it’s always running late) I am called into the consultation room to be greeted by a familiar face. One of the consultants who initially told me about the Klinefelter’s syndrome was in the room and I instantly felt relaxed as she actually seems to care – it’s appreciated when you go into a bleakly decorated room to be greeted by a friendly smile and a notion that someone is willing to listen to your story. There was also another consultant in the room an endocrinologist (hope that’s right) and he seemed okay too – if not quiet and mainly around to observe.

I was asked how I was feeling and it was at this point I got upset.  I don’t normally break down but the way that I was feeling it just seemed like the perfect place to shed a few tears. They asked me how my partner was – and I think this is what triggered it as I had to tell them that the relationship is no more. I could see the look of concern on their faces as they handed me a tissue.

They then started to ask me about the treatment and had I noticed any changes within myself. They also asked if I had joined any of the organisations that they had told me about at the last appointment.

I told them that I had facial hair and I grew it specially to show them – and around the area where I apply the cream I am starting to see hair growth. I also told them about my increased libido and heightened sense of arousal and I also told them that I had a lot more energy and my focus had increased in the past three months. They seemed pretty impressed with what I had to tell them. They asked if there were any negative side-affects and I mentioned the mood swings and the lack of sleep.

We talked about the stresses and they said it could just be the situation however one does expect when your body is undertaking a change that some levels of hormone imbalance are to be expected. I was asked to keep a daily mood diary and report back in three months time.

I told them that I had not joined any of the organisations as they did not appear appealing and frankly the literature that was given to me at the initial consultation was really off-putting. I put an image in a previous blog post to illustrate this. I told them that I was writing this blog as a way to document the change and also a way to help others in a similar situation to me. They wrote it down in my notes so I guess someone will have read or will be reading it at some point.

I then left the consultation room and made my way down to the vampire room to have my blood taken. I used to get really apprehensive over needles and blood – I remember having to have special cream so that I wouldn’t feel the scratch – I also remember punching an anesthetist once who tried to jab me with a needle multiple times – I was young so it probably was more of a tap than a punch!

A few jars later – filled with my blood – I’m walking back to the office. I left feeling a bit strange as I’m doing all this by myself now. Prior to this moment I was doing it to find out if I could have children – now I know I can’t it’s a voyage of self-discovery.

When I got back to the office I put my head down and got on with my work and then left and went home to have a long hard think about my life and what I want from it. I decided that I’m going to start to put ‘ME’ first in all things that I do going forward and focus on building back up my career. It’s not nice to be told that you are not performing as expected and so I wrote down a list of things in my head and made an appointment with HR for the next day.

The meeting went well and following this I had another meeting with HR & my boss and a colleague to map out areas of improvement over the next 2-3 months, which would be measured. I’m determined to make it work, I know I can do it and I guess they know I can do it otherwise I wouldn’t be going through these improvement sessions.

So work are helping me out – they know that I have struggled with my sanity over the past 9 months or so and they are willing to put that to one side and invest in my future career and for that I am thankful.

Right so I have got my work sorted and starting to release some of the pressures of the day to day – now on to me. I had been referred to a psychologist by the GP as I was in need of talking to someone about the past 9 months and being realistic probably the whole of my life. The past decade has been filled with trials and tribulations from a long-term relationship at uni > buying a house > watching my dad suffer with brain cancer > watching him fade away > losing my job > starting a business > breaking up with my fiancé > moving from Brighton to Chertsey > new job and starting from scratch > building a new relationship > trying for children > discovery of Klinefelters > breaking up with someone I cared for a great deal  > problems at work > discovery that last girlfriend has now moved on and is now pregnant!

While I am happy that she is pregnant and is getting what she wants from life and essentially is happy. I’m not a fan about the way that chapter was written. I need to talk about this with the professionals but for now I shall write about it and share my feelings with my readers.

I wanted to write about this sooner when I found out although it wasn’t my place to blurt something out there. I did pen a lot of thoughts but most of them ended up in the bin. I did have my suspicions though as everything in her life was advancing rapidly. I had heard from friends that they were looking to move in together on a more permanent basis and I was told back in January that ‘we’ would never get back together. I’m not going to lie I found this really hard to deal with. This set the inner detective inside me working on overdrive looking for clues to confirm what I already had suspected – a pregnancy. I know that we all move on and we have to overcome seeing our past lovers move on – this just felt really quick for me and I still felt raw about what happened.

It was just another day in May and I had an email asking if I would be able to arrange a date for her to collect some things and if I was willing to meet up so we could catch-up. I had been pretty emotional and got drunk and said / did some stupid things which marred our friendship so I was trying my best not to think about her too much and ignored all the emails & texts I received.

I did the complete opposite of what I said I was not going to do in my previous blog post – I turned to alcohol & food as a way to make myself feel better but all I ended up doing was getting fat and making myself feel worse about the situation.

After talking to a good friend I decided that I needed to talk to her and we could be amicable and maybe we could be friends again. I apologised to her and explained my reasons for this – we agreed on a date for collection and then we didn’t really speak after that.

I started to notice the bump appearing at work and this started to make me feel sad. I’m sad cause I’m an emotional sod and from my point of view we tried to make it work between us for 2/4 years we were together. Through this time we found out the reasons why nothing was happening; the Klinefelter’s and the infertility.

What hurts me more is that within a few months of us splitting up she was with someone new (I expected this) a month later she is pregnant (did not expect this – it’s really easy with someone new) and then 3 months later buying a house with this guy and looking forward to a prosperous future. (I did not expect this)  I have been trying my best to man-up and not think about it. However it is hard when you see them walking around the office everyday – you see before you the life that you wanted. Your character in that dream you shared is now being played out by another guy – it’s a constant reminder that you failed in life again!

Failure is not an option, right? So having already been through my rebound phase – I wanted to find if there was someone out there who would accept me for my failings. I deserve to find happiness, right? I did just that I had found happiness across the ocean and the spontaneous part of me decided ‘who wants to live forever’ & so I got on a plane to meet my new love. I had an amazing time and managed to reset myself back to me again just like I did when I went to NYC!

Though when I returned home my happiness started to unravel when the situation I found myself in became less clear and more complex. I pondered – not again! I wrote a poem to sum up how I was feeling at the time;

No Strings Attached!

You must have misheard me dear
I replied on many occasions
I felt love
Yet you seemed in love with another
I wonder after your message
If ‘no strings’ is only what you wanted
Not me
The fool
Remember I am barren
Without child
I may not understand
The hardships you face
I understand life
and this life has not been kind to me
Full of deceit and neglect
I get sad,
lonely often.
Seeing Emma everyday at work
and her new man -happy & full of glee
I see the bump that I could not provide
So I am protective over my thoughts,
my feelings of love.
When I received your messages
I thought… is that all I was for you?
No strings attached!

Dan Sheridan (c) 2012

Am I ready to love and be loved again? Is there a prosperous future for me and what is my calling in life? Which career path should I follow? Are the choices I have made so far the right ones?

It’s a tricky situation to find yourself in when you reach a crossroad in life. One thing I do know is that I have been put on the earth to help others and feel happiness through a sense of accomplishment of seeing others reach their potential. I started to talk to a few friends recently about the possibility of starting up a new charity or organisation for people like me who have just discovered the wonderful world of Klinefelter’s Syndrome. If you go to Google and type in the word – there isn’t a great deal of information about it & most of it is confusing. There is only one organisation in the UK that relies on charitable donations for funding. After reading all the documentation associated with becoming a charity it seems like it’s too much for just one person to do alone.

Therefore I have decided to start up a project involving a global funding platform. I’m hoping that through this project named ‘Project 47XXY’ will enable me to raise awareness about the condition both in the public eye and within the medical profession in order to create an understanding of its implications. This will be beneficial not only for the individual it affects but also for all those who they have contact with during life.

I’ll be continuing to write monthly blogs about the condition featuring regular project updates.

I hope that you will help me to raise awareness of this condition through a small contribution and become a founding member of Project 47XXY.

Thanks,

Dan

(You can follow the project on Twitter here)

3 A.M. Eternal!

I’ve been thinking about writing a follow-up post to the last post I did as lots of interesting things have happened to me since then. I’m now starting my 4th bottle of treatment – so I’ve done 65 days or so now and there are some massive changes happening that I never even accounted for. Before I get into the details of these changes I wanted to talk about what happened following on from Kevin or Perry?

The last post was rather emotive as I had been going through quite a lot of changes – I also had to write about going to visit the genetic specialist and express my feelings and thoughts on that. I post links to my blog on Facebook so that my friends and family can read the latest news – I never expected anything like what happened following the post to happen. Never in a million years – I am very happy it did.

Firstly some of YOU spoke to me and asked me about my blog and the treatment and how it was going – I rated that. Secondly I got a hug from someone in the office who said they read my blog all the time and felt I deserved a hug – I rated that too. It was out-of-the-blue yet it was a very nice hug so if you are the ‘hug’ person and you are reading this thanks, you made my morning. Third and finally I was minding my own business in the kitchen at work making a delicious protein shake (something I’ll touch on later) when someone approached me and asked me directly about my condition and the treatment. I had been used to speaking that day to people about the blog and the reasons for writing it so I didn’t mind speaking openly to this person in a bit more detail. I’m so glad that I did. It transpired that this person (who I won’t name) has a condition that involves Testosterone replacement therapy and that they have been taking it for a number of years.

I instantly felt relief as we joked about becoming the T-Wolf , the feelings that you get when your ‘peaking’ and the rush of emotions that you face daily. For a moment I thought; ‘hang on just a minute’ – there is someone I have inspired to open up and talk to me about my condition and share with me that they know what I’m talking about. It’s the only time I will thank Facebook for delivering my blog to a wider audience and I want to thank that person directly for talking to me – thanks you made me feel awesome!

In a bold attempt to get myself looking good again following on from a rather depressing & emotive February I decided to undergo some radical dietary changes. I read at length a number of sports sites that talk directly to building muscle mass and tone. I always thought to myself whilst I was growing up that even though I did sport (not that I liked it) I never seemed to be able to grow muscles in my arms and my legs and around the mid section like my peers.

So I am now drinking a protein based drink at breakfast and at lunchtimes mixed with a small amount of cardio work out and a lot of weights and I am seeing some massive changes already. My arms and my chest feel bigger and I believe it’s down to a combination of drinking the protein shakes, being sensible about eating, working out and that magical pot of ‘T’. I read an interesting article about Rampage Jackson (he played Mr. T in the A-Team reboot) saying he was using ‘T’ as a way to boost his recovery time and also as a performance enhancer. It was something along the lines that he was rated about 600 on the testosterone scale and his competitors were naturally 1100. Apparently he wanted a slice of the action so looked to his medical advisor and was given ‘T’. I find it both amusing and ironic that he was playing a character called Mr. T!!!

Rampage Jackson

Well Mr. T it appears to work for you – I can confirm that it is working for me too! I questioned whether or not its cheating – I guess if my body naturally doesn’t produce Testosterone then I’m entitled to give it a go and reap the benefits at the same time. I hear what you are thinking – ‘Dan you are still fat around the midsection’. That is true although that is down to drinking beer and this wolf is on a mission to lean up! So I’m going to be taking a hard look at the way I drink. A random ‘Tuesday’ night drinking session occurred this week and I noticed some other changes that you probably normally wouldn’t see in the daylight. A point I’ll talk about in detail later on.

Lets talk changes. I have been thinking long and hard about whether or not to write about some of these changes in my blog and share it with a wide audience. I don’t want people to think that I am a freak yet on the flip side I don’t want to keep this to myself – it’s a big deal.

Remember I talked about ‘Tony’ the one haired wonder? Since then… 65 days later – Tony has friends. Lots of friends – as you can see from this photo they have multiplied and I have thus named them Tony’s army.

Tony's Army

I’m not sure I like them – they are making ground up towards my chest and I can see little hair holes appearing which can only mean one thing  – hair-festation!

I’ve watched a lot of videos online about people reporting their progress with ‘T’ something that is apparent in all the videos is acne. I appear to be getting more spots than I have ever had. Using the ‘T’ makes the skin very oily not quite sure why this happens and hopefully it will settle down. The acne is just in the area where I haven’t had facial hair so it could be down to the fact that when I shave I’m either A) I’m not doing it correctly or B) it’s a skin reaction to the razer blade. I’ve decided to ease off on the shaving and see what growth I get – I would however like to recommend ‘King of Shaves’ Aloe Vera and Tea Tree Oil shaving gel. It’s clear and doesn’t foam so you can actually see what you are doing and makes your skin feel awesome afterwards! 🙂

I mentioned earlier about cutting back on the drink in a bid to lean up and get my body to a condition of fitness that it’s never seen before. I’m going to give it a good go and more reason to than ever before after the events that unfolded on Tuesday evening. I went out with my friend for a ‘quick’ drink after work and it turned into an all night session leading to a sore head the next day and a feeling of shame and disgust on my part for some of the things that I did L Normally when I go out drinking I’m one of these people who is a happy drinker – I’ll get annihilated and silly and usually there is a tale to tell afterwards but I will never be aggressive, abusive or otherwise. That’s what I thought – I’ve never experienced anything like what I experienced on Tuesday evening. Someone managed to annoy me – I can’t quite remember what he said to me but he really managed to press the buttons so much so the wolf turned into a rage machine and for the first time in my life EVER… I stood up to someone and rather aggressively told them to get out of my drinking space. I never ever EVER do that. I have never behaved that way before. It got to the point where the person that had annoyed me left the venue – I felt bad afterwards and it made me think that I don’t want to see that side of me again. In addition to this my cognitive functions broke down (this is normal behavior) and I managed to insult someone that I really care about and frankly speaking still love – if you are reading this I am very sorry 🙁

I’m sat up in bed at 03:07 writing this blog post. I’ve been writing since 02:00 so I thought it would be fitting to call it 3 A.M. Eternal as it speaks to change number four – Insomnia. It’s a weird feeling, I get in from work make something to eat and chill out on the sofa catching up on pre-recorded TV. Switching off the TV around midnight I get ready for bed and find myself not being able to drift off and go to sleep. Then ‘it’ happens – no I don’t go to sleep, there is some activity that just won’t disappear making my sleep deprivation issue worse.

I think over the past 4 days I’ve had about 2-3 hours of sleep a night if that. If I was lying next to a beautiful understanding woman I’m sure it would have an interesting outcome. Sadly I’m lying in a half-empty bed with thoughts of previous encounters racing through my head and the need to relieve oneself.

You probably think that I am complaining as most men my age probably would trade places. I spoke to a close man friend about this and I asked him if it happened to him or if it was just me – it would appear that it happened at a time but not as frequent and never caused him to lose sleep unless of course there was that beautiful woman lying next to him. I’m hoping that when I have a week off next week I can take a trip to the doctors and discuss this amongst some of the other challenges and also to see if there is an update on the counseling and if I can be referred privately.

This is the biggest change that I have noticed and it’s something I have wondered if I write about it or not. It’s a big deal and by reading it I hope that fellow Klinefelter’s Syndrome men, parents, friends & partners can understand more about the discovery of how the treatment positively affects our bodies.

I’ve had the experience of being in two very loving relationships. One that lasted about nine years that started from university and the other that recently ended that lasted for about four years. During this time you get to know your lover – you get to know what they like and what they don’t like and equally they get to know about you. In the back of my mind I always wondered the reasons for their departure and why they fell out of love with me – what is so different about me?

Well that question has been answered through the discovery of the Klinefelter’s Syndrome and the effects that it has had on my life – the way that I feel as a person – the way that I make others feel and my ability to love and be loved.

I’m naturally a sensitive guy who often is on the receiving end of raw human emotion and that is something that inspires me to write. I’d like to think that I am passionate about love and life and the people that allow me to love them. So you are wondering what this has got to do with change – and seeing that I have meandered off course with my writing I’m trying to think of the best way to frame this up so that I don’t make myself look like a freak!

The point I’m trying to make is that even with some of the challenges I have faced I managed to hold onto and enjoy loving relationships. What I didn’t realise was that until now I wasn’t enjoying those relationships like I probably should have done. I never felt certain sensations like I probably should have done and my interest/libido probably wasn’t where it should have been in respect to my partners and their previous encounters.

Now after 65 days of treatment this all appears to have changed as the person who spoke to me at work put it – as soon as you start to take the treatment you will feel a ‘sexual high’ including the notable early morning blood rush as mentioned in the previous change. The intensity and duration of certain sensations is dramatically different and then this made me wonder – is this normality?

I spoke to one of my previous encounters and she asked me directly if I was sure it’s down to the treatment and if I ever faked the sensations whilst I was with her. It’s not about faking it and it’s not about that person either – as I had felt the same through all of my sexual encounters. Don’t get me wrong the experiences that I have had were great – but take that level of greatness and add a x 100 multiplier to it and well – mind blown! I did some research online and found that several guys had reported improvements after taking the ‘T’ – talk about a performance boost Mr. T!!!

Final thoughts…

Kevin or Perry?

It’s been an emotional roller coaster of a week this week. A LOT has been playing on my mind recently. One of those weeks where I have been wishing I had the opportunity to restart and reload a previous save game -oh if only life was like a video game!

St. Valentine you have a lot to answer for mister! I’ve been missing someone who is a friend for life although has made it clear that she no longer has feelings for me. It has been extremely difficult to deal with this, this week more so than others. When you have been in love (REAL love) it’s difficult to turn those feelings off overnight, life takes time to adjust. You can runaway and do things to take your mind off them for a moment, yet the process is still running in the background eating away at your core.

Now I could have probably dealt with the situation better if I didn’t have another layer running on top of this process. The hormones! Each day I’m fueling my body with replacement Testosterone. My body has been missing this natural chemical over the past 16 or so years so for it to appear all of a sudden makes every day feelings & situations appear so much more intense than they did before.

Adding to the tension, on the Thursday after V-Day. I had been allocated an appointment at Epsom hospital to see a genetic counselor. Or so I thought. This is what I really wanted to talk about.

I arrived at the hospital in good time and the letter stated that the appointment was in the maternity wing. I immediately felt uncomfortable about this when the letter came through – however I thought there must be a connection somewhere.

Upon entering the hospital I walked to the maternity wing and it was like a scene from ‘One Born Every Minute’. Parents-to-be wandering around the corridors looking for a place to check-in. Midwives drinking cups of tea and eating cake could be seen from down the hallways. I walked around the corridors for a while searching for the outpatients part of the wing & all I could find was a room by the entrance with the words ‘Ante-Natal Clinic’ written on the doors.

I thought to myself that this clearly could not be the place that I am having my appointment and walked through the room getting strange glances from the parents-to-be and also the staff. I must have walked through the room several times and it was only when I decided to walk back through the room from a different door that I realised I was in the correct place. The name of the person I was going to see was scribbled on the wall behind the desk. I’d obviously come in from another angle so missed this sign completely.

Standing in the queue to speak with the receptionist I began to shed a tear or two. My emotions had kicked in when I saw parents-to-be & parents with newborn children looking back at me. It was almost as if I had a sign above my head saying infertile. I felt extremely uncomfortable in this room & began to resent coming to the appointment – it felt like a sick joke on behalf of the NHS. As I approached the desk the lady asked if I was okay & that she had seen me walk through the department a number of times before joining the queue. I had managed to get myself into a state at this point so I just politely said that I didn’t think this would be the clinic for me & explained that I had come through another door and missed the sign with the persons name on. I was asked to take a seat & the only one available was by the children’s play area – great!

I could feel myself getting more and more frustrated at the thought of waiting in that room with the parents-to-be. So I started to look around the room to take my mind off things – I felt worse. Everywhere I looked I could see a board that either said ‘how to breastfeed’ or ‘how to change a nappy’. Above me there were interactive displays with offers on baby food or nappies. Thanks for being so insensitive NHS!

Display Boards

I had only been sat down for about 5 minutes and that felt like a lifetime. I was getting ready to say something, restraining my anger by biting my tongue. Then a mother and her young child came and sat by the play area. I felt obliged to give my seat up and I stood towering above everyone with them all looking back at me. I felt in my mind as if they were chanting INFERTILE, INFERTILE, INFERTILE!

Stop this mind torture someone please as a few more tears ran down my face! I then overheard the woman that I had just given my seat up for saying to her young daughter that sometimes she wishes she had never been born. The chanting in my mind stopped & the focus turned from me to her. It was at this point when I thought to myself I’m going to either have to leave or say something to her; ‘you don’t realise how lucky you are!’ – and it was at that moment I heard my name being called through.

I entered the room after 15 minutes of mind torture and the very nice lady (sadly not Deanna Troi) asked me how I was. Any other day I would have been polite – on this occasion T-Wolf stepped in and said ‘sitting in that room made me feel very, very uncomfortable’. I think she could tell that I was feeling upset and sat me down and apologised for the location of the clinic. Agreeing with me that it was insensitive and would pass on my feedback.

We spoke at length about my condition, about what I thought it was and what it really is and why it happens. I started to understand it a little bit more than before, as she was very good at explaining the reasons why. When you are sat with an expert on genetics who takes the time to draw diagrams and illustrations you know that you are in good hands. I told her about this blog and the reason that I have set it up to help family, friends and others understand what changes I am going through at the moment. It then occurred to me that this was not a session of genetic counseling as I thought it was going to be. Although at the time I didn’t mind too much as it was very insightful.

We discussed that I had been through a lot in the past 6 months; work stress, the condition, bereavement, relationship breakdown and more recently starting the T. It was decided that I would benefit from seeing a genetic counselor to work through everything that is happening to me so that I can come out the other end feeling happier about the future.

We then spoke about what happened when I was initially diagnosed with the condition and what affect that had on me emotionally and also about what was offered to me in terms of finding if any sperm did exist within me. The consultant in Guildford told me that there would be a cost to have a micro-dissection of the testicles done to find sperm. The cost of which would be in the region £5,000 and would not be funded by the NHS. I asked at the time what the chances are given my condition and it was 50/50 – it’s a lot of money to gamble on chance. At the time it was an emotional roller coaster having just found out that I couldn’t have children through normal means put a lot of pressure on my relationship and also on me as a person. I let myself go & pushed away the person that I loved and now as I write this with tears in my eyes I wish I had known then what I was told on Thursday as it might have made a difference on the way I behaved – “Can I restart that level again please?

There may be a chance that I can get the operation for free. If there is a chance I will gladly take it whatever I need to do. I couldn’t help but think that maybe if we had been told this at the start, things now could have been different today. It’s a snippet of hope that in my mind is life changing!

I then told her about the god awful pamphlet I was given with the picture of what can only be described as not your every day man on the front – below for your enjoyment!

Klinefelter Syndrome Guide

This was another reason why I decided to write this blog – I looked at this picture with my partner at the time and we both came to the conclusion that this looked like a stereotypical gay man – what were the NHS trying to imply that every man with an extra X chromosome is gay? I am not! I like T&P!

The session ended on a high! There is a chance that I can get the operation I need for mind closure for free. There ARE people who I can talk to and work through the emotional issues. Despite the initial tears at the start of the appointment -upon leaving I started to feel much better about the future!

I had the opportunity to ask a few questions. The one question that I needed to know the answer to is “by taking the Testosterone am I going through puberty again?

– “Yes Kevin you are!”

Counselor Deanna Troi please!

Deanna Troi Wiki

Any fan of Star Trek will remember this lady. If you don’t then this is Deanna Troi the counselor on the USS Enterprise NCC-1701-D & E. You are probably wondering what the hell this has to do with a blog about Klinefelter’s Syndrome. Well here is the thing – next week I embark on a new chapter in my life ‘Genetic counseling’ & I’m hoping the counselor will be just like Deanna Troi. Make it happen NHS!!!

I received a letter today from the hospital to say that my first appointment is next week on Thursday morning at Epsom hospital. Epsom not Guildford? Ah balls that means it is not going to be straight-forward to get there! My other issue with the letter is where the clinic is based in the hospital – pediatric unit ; maternity wing! A little bit of sensitivity please NHS. I’m coming to the clinic to seek help with the fact that I am infertile – so why on earth is the clinic based in an area surrounded by children & parents to be. Doesn’t sound right does it? Another thing that has put me off attending is a questionnaire that came with the appointment letter. Upon reading it 75% of the questions are based around starting a family and the rest about me as the patient – there isn’t even an area for comments! You can probably imagine what I would be writing in the comments section. I’m certainly going to bring this up when I get there.

At first when counseling was offered to me I didn’t think it applied to me & I certainly thought that having the support of family and friends would be enough. I was wrong, I can admit that. So I have swallowed my pride a little bit and opted in. The issue is that family and friends can only support you through providing that shoulder to cry on or to be on the other end of the phone and tell you that everything is going to be okay even when they don’t fully understand the circumstances. I have to take this opportunity now to thank family and friends for being supportive and also for being interested in my journey.

Counseling apparently comes into its own here as these people are trained to deal with people like me. They know the journey like the back of their hands and fully understand the circumstances surrounding the diagnosis & treatment. It’s here, in this 1-hour per week session where I lower my shields and let someone with a fresh perspective guide me through it all.

At Christmas I took myself away to reset and find myself again. When I returned I felt great – I was looking forward to a new outlook on life and starting the treatment I had been told so much about. 4 days into the treatment I started to feel change happening. 22 days into the treatment and I still feel great. I wake up at around 06:30am each day and every other day I shave. Something I never thought I would be able to do. I used to shave the 3 or so hairs on my chin that grew every 3-weeks now it’s becoming a routine.

I have so many questions that I need answers to and I’m hoping I can talk openly about these with the counselor as everything is changing on the outside and on the inside. One thing that I have noticed more so in the past week is that my mood is fluctuating. I read a few similar blogs online that mentions during the second batch of treatment (each one lasts for 20 days) this is more apparent. It’s as if I am going through puberty all over again – 17 years late. My emotions are all over the place at the moment & what is not helping me is the fact that for the first time in 12 years I’m not going to be taking part in the Valentine’s Day theme – love no longer lives here anymore.

The fact that love is non-existent in my life at the moment does bother me and is something that I will be bringing up with the counselor. My problem is this; if I was ever to find love again at what point do I tell that lady that I am infertile – at the beginning , in the middle or when? It’s something that plays on my mind constantly. It is also something that inspires me to write down my thoughts and feelings in my poetry.

On the subject of poetry, when I was up around 06.30am on Sunday I decided it would be a good idea to sort out my flat. I came across a box of old VHS tapes. In the box I found a tape featuring this little gem – be prepared to laugh out loud as we rewind back to the 90’s.


Counselor Deanna Troi report to the bridge please!

 

 

T… Wolf!

So I have been on the ‘T’ for about four days now. I didn’t really expect to feel different in such a short space of time – but there is definitely something happening – something really good!

I can only link the changes in myself to a film that happens to be one of my favourites from my childhood era – Teen Wolf.

T Wolf

In my case I am ‘T Wolf’. I never expected any of this – hair is starting to appear in places where it wasn’t present at all and I’m starting to feel VERY different in myself. In the film Scott discovers that puberty for him means turning into a werewolf at rather random times – and during this time he also becomes a top-notch Basketball player. I’m not by any means turning into a werewolf nor do I feel like I could have a career change and become the next Luol Deng – I do however feel more confident and my everyday focus on getting things done is improving!

So what is different other than Tony appearing on my chest? Who is Tony – Tony (only) the one hair – that’s how it starts. One leads to another and so on and so forth. My appetite is more than it was – I’m getting the urge to eat a lot more! I feel like my energy level is through the roof. I am waking up much earlier than before at around 06:30am (probably normal for everyone else) and doing chores before work. WTF – chores?? Yes – it’s bonkers!

Oh and before I forget to mention it – I now have to wear glasses all the time – this is an unrelated change! More of a ‘just in-case’ you happen to see the ‘T Wolf’ surfin’ USA on the top of a van through the wild streets of Guildford then this is really me…

 

Spectacular

Finally remember that scene from Teen Wolf where it’s the house party and Scott ends up in the cupboard with Boof? & he gets an uncontrollable urge… I appear to feel the urge more so than I did before! Except I don’t own a cupboard and there is no Boof 🙁

I will be creating some form of video to document my experiences – they will not be voyeuristic of me applying the gel! Just some thoughts about the transformation – probably not like this either;

Are wolves nocturnal?

Klinefelters Syndrome