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 4^th 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!!!

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.

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…

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!

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!

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!”

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!

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.

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…

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?

I picked up the ‘T’ yesterday. I was really excited to get it finally and got up mega early for me at about 5am. I got the chemist at 8am and they didn’t open until 9am. So I parked myself in Costa coffee and had a nice cappuccino to calm the nerves.

When I got it, I ran back to the office to apply it!

The ‘T’ comes in a pump action bottle – fairly small – and can easily fit in a wash bag so that you can take it away with you on holiday. First of all you have to prime the pump. Fairly straight forward – you just take the top off of it, and then press 8 times on the pump. It’s best to do it over the sink as some of the gel will come out – don’t worry just wash this off your hands with soap and water.

Next came the application part. I had read a few horror stories on-line about the gel being sticky and taking forever to be absorbed into the skin. So I decided to do it one squirt at a time and then ease it into my stomach area. The leaflet that comes with the tube suggests rubbing it into your stomach one day and then alternating between your inner thighs for the next. The gel that comes out is odourless and comes out in a teaspoonful amount. I didn’t find it too sticky and it seemed to absorb quite easily into my stomach area. 6 squirts later and all was done. Washed my hands – put back on my top and my colleagues were non-the wiser what had just taken place in the bathroom at work.

I sat for a few minutes wondering if I would start to feel strange or itchy. Nothing really changed. Got to lunch time and I felt absolutely ravenous – so I had a massive meal, probably more than usual. Towards the end of the day I felt myself getting tired as usual and just wanted to escape home and sleep.

I wasn’t really feeling any different other than a burning sensation on my chin, this could be attributed to the fact that I had my 3-weekly shave that morning – as a test to see if anything would grow during the day. I think I was being optimistic – but there is definitely more growth than normal!

When I got home it was pretty cold so I got into my lounge wear hopped on my bed and went sparko. Woke up to the sound of the neighbours having a shouting match and throwing things around. At first I thought it was my neighbour upstairs but then I realised it was the next door neighbours. This was 10pm and I was still tired so I decided to go to the toilet and follow-up with another snooze. This is the interesting bit! Normally when I got to the toilet a small amount of pee comes out – cause I pee quite often during the day. I hadn’t really thought about it in too much detail and then when I remembered I hadn’t actually pee’d all day. So when I went it was like the scene from Austin Powers where he keeps peeing for ever and ever and at one point I was wondering if I was ever going to stop! It did stop eventually! Is this going to be the norm from now on? I hope not!

I got back into bed and fell asleep. Going to bed mega early is probably not the best decision – I woke up wide awake at 2am and feeling absolutely ravenous again. I tried to go back to sleep again and ignore the hunger but my body / brain was not having any of it so I got up and made something to eat. I’ve been wide awake for about 6 hours now since about 2am. I don’t feel tired and well it’s now time to get-up and have a shower. Then make the second application & then get my backside to work!

I’ve been thinking about doing a video diary so that I can look back and see if any change has occurred. I’m going to start it at the weekend and see what happens – I’ve seen some amazing results on YouTube where people in different circumstances to me have changed so dramatically over time. I’m not expecting miracles, I am however excited at the prospect of change!

So is the way with the NHS – nothing goes to plan does it?

11 days later than planned I finally get to pick-up my treatment from the chemist. This should have happened 11 days ago – when I turned up on the 5th of January to get my prescription. They told me it could take up-to another month as they had not received the letter – I was mortified. I had built myself up for that one moment.

A week later a letter from the hospital arrived asking me to see the specialist again. I’m not going to lie this freaked me out. I text one of my best friends for reassurance, as I wasn’t sure I was going to be able to sleep for worrying over what it could mean. I spent that evening awake, mulling over what it could be – is this the reason that the prescription wasn’t ready for me?

The next day I spoke to the secretary to the specialist who had to check a few things and get back to me. The first thing that they told me was that the letter had been faxed to the GP, sadly they admitted they had sent it to the wrong one & that they would send it on immediately to the right one. Then I asked about the letter – and they said that it was a clerical oversight as the specialist wanted me to try the treatment for about 4 months to see if anything improves with my condition.

I had to wait another couple of days for the GP (the right one) to write up the prescription and on Friday 13th 2012 I was able to collect it on my way to work. I was really excited to think that I would be able to start using it on the Saturday. Not happening! It would appear that the drug used is not something that’s prescribed often so most chemists have to order it in. So I have spent most of the weekend researching the changes ahead – most of which appear daunting.

There are a lot of scary videos on YouTube featuring people with gender issues taking Testosterone – this is not the reason that I am taking it. I’m happy to confirm that I have what I was meant to have – just missed out on a few other genes that give you muscles, body hair, focus, energy and libido.

From the research that I have done it would appear that I will notice change within a week of taking it;

• increase in appetite
• increase in muscular mass
• change in body shape – shoulders broad & hips narrower
• more energy – able to do more activity and not feel that lull that I often feel during the day
• increase in libido – x 10 (One wish – purely in the name of science; that my ex-girlfriend would like to take a test drive to see if anything has changed – doubtful!!)

I’ll be reporting back this evening if I notice any differences in my day-to-day and then a follow-up soon after – wish me luck… I guess!

2012 is going to be the year that everything changes – I’ve decided to start taking the treatment so that effective January 5th 2012 the change shall be coming. Not entirely sure what changes will occur, they will be good – I have been promised this!

Since I last updated this blog – a lot of things have happened in the past 5 months – which is one of the reasons that I haven’t taken the time to write anything down. I’ve just stored it in my head until now…

I often wonder what people around me would think about me if they knew about my condition. Would it change the way that people see me. I hope so!

It’s been a complete shock to my system – it’s compromised me mentally, physically & emotionally – it’s changed the way I think about my life and the things that I want to do. I’ve put on so much weight since I found out and I can’t seem to shift it – its not nice to be a fatty and have to buy new clothes because your body is changing!

I’ve often found myself staring blankly into space thinking about why the hell is this happening to me – I’ve lost focus in daily life that has cost me dearly. I’ve also lost touch with friends and family because I’m not sure how I should tell them – I’m a mutant okay! Just missing some of the super powers!

This is probably a really stupid way of doing it – but sometimes you just need to write down what you are thinking and then for it to be read by others around you. You can’t escape the fact that people will always judge you – you’ll always get labelled for the way that you act or you are perceived by others (quiet) I’ve faced this throughout my life to date – and it stops here.

I wrote a poem (that’s what I do) about losing everything around me – this is what is happening right now – unsure of what the next steps are.

Everything I need I have,
Everything I have is lost!
© 2011 – Dan Sheridan

Seeing friends, family & social acquaintances lives documented right there for you to peruse at your leisure on social media is often something that makes me wonder if its time for me to tell my side of the story. I think it is, a problem shared is a problem solved!

What happens when that problem doesn’t have a straight forward solution: when the dream is shattered & the something that you want most you just can’t have. It’s like that time when I was seven years old and all I wanted was Castle Grayskull for my He-Man, and I was denied – so I had to improvise with a cardboard cutout – don’t think that’s going to work this time around!

What happens when the only person you could just pick-up the phone and talk to is no longer around (dad) and the person that kept you grounded has slipped away? I’m such an emotional sod – tears are dripping down my face as I write this and remember the good times of days gone by.

The biggest decision of all is waiting just around the corner whether or not to accept the treatment on offer… tell me what would you do?

In the previous post I mentioned some of the physical attributes of the condition that I have been diagnosed with. There are also a number of psychological and social traits that are common. These are the ones that I have:

• Lack of energy; due to the small amount of testosterone my body produces, I have a natural lack of energy in my daily life. I like my sleep / rest and I have often been told that I am laid back and easy going. I think this is due to the lack of energy – if I had more testosterone I’m sure I would be running around from A-B with a constant urge to be active.
• Intelligence; I’ve read articles that suggest a person with 47xxy is a slow learner, and may have problems early on in life during school. As I look back on my younger years there was a point in my life where my class mates moved into the next year and I stayed behind with the younger kids. I’m not sure if this was a class-room space issue or that I learned at a slower pace than my peers. Most probably the later of the two as sometimes I found it difficult to concentrate. That being said in terms of grades I was average – in my GSCE’s I got one A, three B’s and 5 C’s and felt rather proud of that. Going on from there I did average at college and passed my A-Levels to get me into a decent University. I graduated in 2000 with a 2:1 honours degree in multimedia technology – I guess through my academic life I maintained a steady course. I have also read that some cases of the Klinefelters syndrome would suggest that IQ ranges are 10-15 points lower than someone without and on occasion are much higher. I remember doing an IQ test and scoring really highly – I think it has something to do with being left handed (not related) and have control over both sides of my brain. I also feel that I have some great mental powers, for example I’m good at remembering strings of numbers and phrases – in particular passwords. I know my credit / debit and bank information without needing to look at my cards. I also have about 50 or so password / email combinations stored – and have the ability to remember things as if I was watching a video or looking at a picture – a photographic memory of sorts.
• Social Activity; At school I was never a fan of team sports, now in my 30′s I’m not your average male. I’m not interested at all in sports like Cricket, Golf, Boxing, Athletics or Football. Unlike some of my colleagues at work – football does not rule my life or my social calendar. Instead I fill my calendar with activities that I like to do and make me feel cheerful; playing video games, exploring the countryside with my girlfriend, going shopping and creative writing. Going back to the theme of being at school, I was never motivated to join a team or a club – probably because during PE sessions I would be often caught day dreaming at the side of the pitch or deliberatly running in the opposite direction so I didn’t have to take part. On the other hand I quite liked solo sports – Swimming was a favourite and during my school years I achieved many badges and awards. I also was a keen cyclist and rode my bike everywhere – recently through work I have joined our cycle scheme and got back into cycling – it’s a great way to exercise doing something I like to do – and not running in a gym surrounded my testosterone pumped guys – which for me is a very daunting experience.
• Friends; I’ll be honest I don’t have many ‘man’ friends – this is probably due to the fact that I don’t like team sports so outside of work I probably don’t have anything to talk about that your typical man would discuss. I like music and have a very eclectic taste after working in the industry for over 5 years. I like Sci-Fi shows (Doctor Who, Stargate (I have even had a beer with Teal’c) V, Battlestar Galactica etc) and a bit of a film buff. I don’t really have anyone that I would pick-up the phone and have a chat with – feels a bit odd, and some of the people that I know would probably take the piss – so I generally avoid thinking about doing this. I remember when I was a college and at university a large percentage of my friends were female. I’m not sure if this has anything to do with having an exta ‘X’ chromosome – I would talk to my female friends for hours on the phone or down the pub and at the time thought it was very normal to do so.
• Emotions; I’m a very sensitive / emotional person. If I’m watching something on the TV that has either a great or sad story I will generally shed a tear. I’m not ashamed of this – I actually embrace it, as it shows that men can have a softer side and it is accepted. I’m not saying that I’m balling my eyes out – just the odd tear will appear from time to time. I think this is what has enabled me to be a creative type and write down my thoughts and feelings in the poetry that I write. I’ve watched people read what I have written and cry their eyes out. I’ve got a weird way of seeing something happen, capture the emotion and then write it down – so when someone reads it back they feel exactly what I saw and it triggers those emotions all over again.
• Confidence; When I’m on my own and in control of a situation – I’m as confident as I need to be. When I’m with others and in particular colleagues, my confidence goes out of the window and sometimes I struggle to make sense. I’m not sure why this happens – I can only relate it to when I go for a pee, and someone comes in and pee’s next to me and then I can’t pee until they have gone – it’s that same kind of feeling. It’s very easy for people to misundertand who you are as a person when your confidence takes a holiday. I’m sure many people at work think that I’m quiet and shy and not confident – that’s not the case at all. It’s down to the people that surround you, in my group there are a lot of people who are naturally loud and naturally more hairy than me – so they stand out. If these people understood my condition, things might feel different for me and I would feel more confident when speaking to them and when present in a group. Someone once said that we all have the power inside of us, we just have to believe – I think this is true – however having the right (normal) dose of testosterone in your body to begin with helps even more.

It’s getting late, so I best go to bed as I like my sleep – something that I read is that people with Klinefelter’s Syndrome have problems getting up in the morning and starting their day. This is defintely true of me. I can stay up till 2-3am and not feel tired, however when the alarm goes off at 07.30am I just want to stay asleep. Normally go through 2-3 rounds of snooze alarms before I can pull myself out of the bed and get ready at a snails pace. As soon as the alarm goes off my girlfriend is bolt up-right in the bed and off downstairs for a shower – even with HRT (Hormone Replacement Therapy) I don’t think it will make me get up any quicker – however I’m looking forward to testing it out and seeing what results I get.

I woke up one morning and wondered why there isn’t much information on the internet about the condition that I have recently been diagnosed with. If you look at anyone in the street – it’s hard to point a finger at someone and instantly know that they have Klinefelter’s Syndrome or 47XXY as there is nothing about the condition that makes you stand out from the crowds – so why is there hardly any information about it?

What is Klinefelter’s Syndrome?

Klinefelter syndrome, 47, XXY, or XXY syndrome is a condition in which human males have an extra X chromosome. While females have an XX chromosomal makeup, and males an XY, affected individuals have at least two X chromosomes and at least one Y chromosome. Because of the extra chromosome, individuals with the condition are usually referred to as “XXY Males”, or “47, XXY Males”.

Signs and Symptoms

Affected males are almost always effectively infertile, although advanced reproductive assistance is sometimes possible. Some degree of language learning impairment may be present, and neuropsychological testing often reveals deficits in executive functions.In adults, possible characteristics vary widely and include little to no signs of affectedness, a lanky, youthful build and facial appearance, or a rounded body type with some degree of gynecomastia (increased breast tissue). Gynecomastia is present to some extent in about a third of affected individuals, a slightly higher percentage than in the XY population. About 10% of XXY males have gynecomastia noticeable enough that they may choose to have cosmetic surgery.

After reading the above you can see why its not a condition that you would shout about.

I think differently – in terms of physical appearance. I’m lanky, I have a large wingspan (the doctor’s words – not mine), a youthful look (lack of body & facial hair), ability to gain weight only around the mid-section, problems with my teeth from an early age and after a years worth of tests and hospital visits it would appear that I am infertile.