Ed's hypo blog

Entry 15

2010-10-12T10:36:00.000-04:00

10/12/10

The HEA conference has come to a close and I'm an emotional mess! I feel like I've been sucker punched because I never saw this coming...

I'm lost. I've put SO much of myself into preparing for the conference and trying to make it as beneficial as possible for those who attend. Now that it's over, I feel a void. Now what? This conference has been a labor of love for me and, honestly, I feel a little lost without my tasks. :)

I'm sad. It's kind of like the let down after Christmas, only stronger. Like having the most joyful holiday with all your favorite family members and giving/receiving the most powerful/healing type of love. Something that brought me so much happiness has come to an end.

I'm scared. Powerful events like this always have a potential to result in some form of change. I don't yet know what this will mean for me. Personally, I'm in a very vulnerable state; I know this. Not yet realizing the full impact of this event is scary for me. I like to be in control of my life and my emotions; right now, there are some areas that I've lost that control and I'm anxious about where I'll go from here.

I'm grateful. The team of people working with me to put this conference on for the HEA members was absolutely AMAZING! Together, we were able to provide an extremely valuable experience for our members, professionals, and ourselves. This could not have been possible without the contributions from my team and the most wonderful professionals I know! I am forever grateful to you all - or, should I say "y'all!"

I'm thankful. Having hypospadias is not something I would have chosen for myself. However, making the choice to move forward and out of some pretty negative places has been SO much easier with the support of my HEA family! My "brothers" are very caring, understanding, empathetic, compassionate, supportive... I am thankful for them! I'm especially thankful for having such a great roommate over the course of the conference. Having administrative tasks throughout the day meant that I couldn't focus 100% on the material. The time spent talking 1:1 with my roommate was extremely healing! Thanks Greg!

I'm proud. This conference turned out extremely well. I've heard from several people that it was the best HEA conference ever! I'm proud that I was able to successfully lead my team in executing the organization's vision. Not to mention the flexibility I needed to demonstrate as things came up along the way...

I'm overwhelmed. The healing impact that I could see from others as they experienced the conference was extremely powerful! People finally getting the answers, acceptance, and support that they've been searching for - it's truly a blessed experience! To hear someone disclose that the conference was the final step before suicide and now feeling that life is worth living - I can't put that feeling into words! And that's just one of the experiences from this event!

I'm motivated. Seeing the positive impact that HEA and myself can have on other people - witnessing it first hand - is very moving! I'm going to do what I can to bring this group to the next level. I'm a man with a plan; I just need to frame it out and execute it.

I'm hopeful. After this conference, I feel more accepted, supported, and loved. I even think I feel more self-acceptance, self-appreciation, and self-worth! My hope is that I continue to build upon that and keep continuing my journey.

I'm annoyed. Because, right now, I need to sign off, pack up, and head out. LOL

So long, San Antonio! Thanks for being such a great host for such a powerful event! And many thanks to those who attended - YOU made this conference what it was! I appreciate that!

Ed

Entry 14

2010-10-03T14:43:00.000-04:00

10/3/10

Happiness is a deceptive and elusive beast!

I've been an emotional mess and in a state of crisis since last week. My demon struck hard, swift, and deep!

Maybe I should have seen this coming? I don't know... Since I started striking back at my demon about 4 years ago, I've been on a path of recovery, healing, and self-acceptance. I am very well aware of the fact that this is a journey and not a destination.

I'm realizing now that I've been taking A LOT of actions over the past 6 months or so that have blown the door wide open and exposing my true self - my weight loss, planning the HEA conference, researching hypospadias and working on my book, my recent hopes of having my hypospadias repair, etc. Until now, I hadn't realized the emotional impact that these were taking. My demon is very sly and had been actively keeping them from my consciousness! Intense feelings have been building over this period of time and now I'm hemorrhaging with emotions! I am physically, mentally, and emotionally drained! Not to mention -extremely vulnerable now! I'm scared! As a hypospadian, I've always been very much in control of myself and my emotions. I feel I've lost that control...

I started therapy on Friday. I did some research and found someone who specializes in male sexual trauma and issues. I know that my current state is the result of my own life experiences, actions, and choices; no one else is responsible for it. But, I am starting to realize that I have always felt so bad about myself that I NEVER felt that I truly deserved to be happy. The closest I could ever get was to focus on making other people happy; this, in turn, would give me some happiness. Living vicariously through others. What a harsh and powerful realization! That I never felt that I was WORTH happiness! Wow...

But, that is changing now. My "work" has allowed me to be a little more accepting...forgiving...and loving of myself. Maybe I AM worth something? Maybe I DO deserve to be happy? But, what does this mean? That's the current question...

What I can say is this - I just made a new commitment to myself! Whereever this crisis takes me, I am going to be honest and true to myself! It's a new (and uncomfortable) belief for me, but I DO deserve to be happy!

Entry 13

2010-09-28T22:45:00.003-04:00

9/28/10

Good evening, World!

Time has flown! I can't believe it's been 11 days since my last post. I've missed my blog...

Recovery had it's ups and downs. I swear, getting around the house with the catheter for 5 days was like having a ball and chain! I realize that thing has it's purpose but it's WICKED uncomfortable! The recliner was my best friend during that time...

The first few days went like clockwork.  Some discomfort - that's to be expected. But, no pain. Everything was progressing as it should...until Sunday...

Those all-too-familiar sensations started kicking in - burning...urgency... Yep, my urine's dark. Oh crap! I know my body and realize that I am coming down with some kind of infection. Why didn't they send me home on anti-biotics??? God knows what foreign objects they had inside me... I start to get annoyed that the doctor didn't talk to ME after the procedure. Hind-sight.  I convince myself that Monday is only a few hours away; I will contact the doctor's office in the morning. It was a pretty uncomfortable night but I popped some tylenol and managed.

I called the doctor's office first thing Monday morning and advised them on what was happening; my follow up appointment wasn't scheduled until Tuesday but I advised that I would be more than happy to come into the office today to get checked out so we could tackle this infection before it got too bad. I left the message and waited for the call back. When the nurse called me back, she asked if there were any blood clots in my bag or if I had any issues with drainage. At that point, the answers were "no" and "no." She advised that there was no need to be seen that day; all I needed to do was increase my water intake. Ok...you're the professional... Like a good patient, I do as I'm told.

Yep...Murphy's Law...

As Monday unfolds, my output got darker, I started passing small clots, and started having difficulty draining into my collection bag. UGH! Sometimes, I really hate being right! At that point, I just needed to sit tight and wait for Tuesday. Tylenol PM helped make my last night sleeping in the recliner manageable. I started the day with a bariatric follow-up appointment; my uro follow-up isn't scheduled until 1 pm. I was happy to get a great report on my bariatric progress - down 91 lbs! Following that appointment, I decided to call the uro and twist some arms so I could be seen earlier and start some anti-biotics ASAP. They agree to see me right away and start the check up but advised that the doctor would not be seeing me until 1 pm.

Thankfully, I didn't need to wait long once I arrived. A very nice (but young and inexperienced) aid settled me into an exam room. The poor kid didn't know what to make of me as I started rattling off my symptoms, suspicions of an infection, multiple requests for a urinalysis, and demands for anti-biotics. All he could say was that he would advise the uro nurse and that I should revisit my concerns when they come to see me. He did an ultrasound of my bladder and determined that I hadn't been retaining any urine as it appeared pretty much empty.  The nurse was obviously pulled in several different directions that morning as she was triaging patients. At one point, I could hear my aid discussing me through the door; I could tell she wasn't happy and that she and I had two TOTALLY different views regarding the urgency of my care. I had a few choice words for her that I shared with myself silently. My suspicions were confirmed when she entered the room. In short, she asked a few questions, removed the catheter - thank God - and then flushed out my bladder. Her take on all this was that: 1) I wasn't drinking enough water, and 2) I need to urinate more frequently. Although I just emptied my bladder, I still felt the need to go again. She said that was normal and that this sensation would go away. Then, she sent me to lunch until my 1 pm appointment with my doctor.

After a couple trips to the restroom during lunch, I actually did start to feel a little better. Maybe the nurse was right???

I had an interesting visit with my doctor at 1 pm. I took the opportunity to discuss my case in more detail than he liked. It was apparent that the appointment was taken longer than he wanted. I didn't care. This man saw my urethra inside and out. I wanted answers. He reviewed my surgical history and overviewed the procedure that was just done. He informed me that he was able to remove a mass approximately the size of a finger from my penis; he was able to work it out through a fistula and did not require surgical intervention. This mass was calcified hair from the hair-bearing skin used in my urethraplasty years ago. Sadly, he advised that I would likely get this again at some point in the future. During the appointment, I gained a better understanding of my urethra and fistulas - apparently, I have several. He advised that any surgical treatment for me was beyond his expertise and the expertise of other local uro surgeons. Centers of excellence would be my best bet; he recommended a doctor out of Boston who is about to retire. A productive conversation with my doc. Though, I did make sure that he gave me a script for anti-biotics before we wrapped up - just in case...

It was nice to be able to walk and drive without having the catheter! The rest of that day and the next went like clockwork! No pain or discomfort. Clear output. I felt great, so I held off filling the script. Life was good. Until...

Thursday morning. The dark urine, discomfort, frequency, and urgency were back! And, before noon, I was passing blood clots the size of dimes! No man should ever have to pass anything like that! The sensation of it all was enough to make me want to vomit! I had several boughts of this before I broke down and asked my wife to fill the script. It was time for the Cipro!!! By that night, I was already starting to feel better. Thank God! That was the most nauseating sensation that I have had in a VERY long time!

Things continued to progress well for there on out! The recovery time allowed me a chance to rest up and begin to contemplate my nexts steps regarding my hypospadias. I was SO ready for a fistula repair. I was mentally prepared for it. My belief is that I will start doing some research on national centers for excellence for reconstructive urology. Maybe next year will be the year that this dream of mine comes true? Who knows? I do know one thing - I've had enough procedures for this year!

The moral of the story: know your body and advocate for yourself; they may be the medical professionals but this is YOUR body!

Entry 12

2010-09-17T10:01:00.003-04:00

9/17/10

Well...I've got good news and bad news...

The good news is that everything went well yesterday. We had to wait longer than expected but that was alright, I guess - doctors don't work 9-5. The pre-op stuff wasn't so bad. The nurses and doctors were great! And, there were only 2 attempts for the IV. I approached this procedure with peace, determination, and a lot of hope. I was in and out of the OR in about 1 1/2 hours. When I came out of the anesthesia, my nurse advised me that everything went well and that I would be going home that night. I asked her what was done in the OR. She advised me that cystoscopy, retrograde urethragram, and removal of the mass was performed. No fistula repair???

No. What???   My heart sank! I wanted to cry! I prepared myself, physically, mentally, and emotionally for a fistula repair (and a new life without one) - only to be disappointed! I was crushed... And, I got a fat lip from the anesthesia tube! lol

I had all kinds of questions but the recovery nurse could not answer all of them; she could only go by what was in my chart.  I was frustrated...but it wasn't her fault. She informed me that I could call the office tomorrow to ask any questions that she could not answer; I was also advised that I have a follow-up appointment with the doctor on Tuesday and that my catheter would have to stay in until then.

My wife and Dad were at the hospital with me; I am very grateful for their love and support! I'm sure that the waiting game was very emotionally taxing for each of them. When they arrived in the recovery room, my wife informed me that the doctor had talked with them and filled them in. He showed them photos from the tests and of the mass. Apparently, this mass was impacted hair that was growing in the skin and became infected; this is the result of hair bearing skin being used to create my artificial urethra when I was a child. The doctor commented that the mass was about the size of a finger and that he was surprised that I had been able to urinate at all. He also advised them that a fistula repair for me was beyond his expertise, so he did not attempt it; there are hospitals in MA and VA that specialize in adult reconstruction and that might be an option for me.

So, I returned home last night. And, it's me and my "little friend" (the catheter) until Tuesday. "Say hhhello to my li'l friend." I can't seem to get that line out of my head. lol Oh...and my fat lip - can't forget that!  Yes, my humor defense mechanism is kicking in to counter my disappointment. It's a good tool to have.

I am busy finding the silver lining in all of this.  I am not one to stay down for long. The mass was not a tumor or cancerous - that is a HUGE plus! And, I am still better off now than I was before the procedure. Maybe this procedure was just another step along the path toward my fistula repair? Maybe it isn't? Disappointed? Yes! However, I am reminding myself that there are others out there who have it worse off than me.

So, today, I am busy reconciling my emotions, getting my head on straight, and enjoying some coffee...I missed it yesterday!

Entry 11

2010-09-16T08:43:00.000-04:00

9/16/10

Well...today is the day! I go under the knife at 3:10 this afternoon!

I'm sitting here on a cool, pre-fall morning contemplating what lies before me today. The sunrise is absolutely beautiful! Shades of pink and orange are lighting up the morning sky. A cup of coffee would be perfect; but, I'm on the pre-surgical - "nothing by mouth" - diet today. NO COFFEE FOR YOU!!! (for any Seinfeld fans out there) lol

Several things have happened since my last entry. I've continued to find ways to keep myself busy so I wouldn't have too much time to stress out. "Down time?" What's that? But, most importantly, was the text I received around 6:00 on Monday morning; Dion passed away! Shock and sadness came over me. The world lost a good man! Again, the significance of my procedure was put in perspective for me. There is always someone worse off than you; when you really stop to think about it, this is true...

My hypospadias has had a number of negative impacts on my life - my weight issues, trust issues, and insecurities to name a few. BUT, it also has given me something extremely positive - intestinal fortitude! Throughout my life, I have had to focus, dig deep, and find the determination necessary to overcome my "hypo hurdles." It was time to call upon my strength again. Earlier this week, the brutality of the procedure was sinking in - my penis was going to be cut open! It didn't take long, however, for me to find my resolve. I am determined and going to meet this head on! I know that this is what I need to do and nothing is going to get in my way...

I am ready! I can look past the surgical act, pain, and anxiety to see the end result! I can do this! This fistula has haunted me all my life! It may sound silly to some, but the thought of only having one hole brings me to tears. I am so close to attaining one of my dreams! A little pain and the temporary inconvenience will be worth the result! I am staying positive...

Thanks to everyone who has offered their encouragement and support to me as I've prepared for this procedure. It has meant more to me than I can say. Your thoughts and prayers have helped me to be strong.

I am signing off for now and will do my best to let you know how I'm doing within the next day or so...

Entry 10

2010-09-10T18:19:00.002-04:00

9/9/10

I am numb from emotion and can't decipher exactly what I feel...

I went for my pre-admission testing today. Until now, I had been so busy with work, family responsibilities, and back to school preparation that I didn't have time to think about my upcoming procedure. It was kind of nice, actually. However, as I turned right off the highway and made my way toward downtown Albany, I caught a glimpse of the Corning Tower (the tallest building in the city). That's when it hit me - I am returning to the hospital where my childhood surgeries were performed!

I have been lucky enough to not recall anything from my earlier surgeries (except for the ether mask trauma).  I practically lived at Albany Medical Center for 4 months when my kids were born - and I was fine! Today, however, I'm seeing Albany Med a little differently. I feel my body tense up and my stomach start to churn. I try to distract myself by leading my mind toward other topics - the pile of work waiting for me after my PATs...getting the kids ready for the 1st day of school tomorrow...reflecting upon a conversation with a counselor earlier in the week... Ha! Nice try! But, I know myself too well! My anxiety is continuing to grow...

I park the car and make my way to the footbridge that connects the parking garage to the hospital. When I reach the check-in area, I try to hide my anxiety behind a curtain of forced positivity with my conversations with the staff. "Fake it till you make it," right??? Once I'm all checked in and waiting, I try catching up on some emails with my Blackberry. That worked for a little while. Then, I looked up and saw a man standing in front of me; "I know that I know you but I can't figure out where I know you from," he says to me. I tell Paul my name and remind him that we used to work together about 20 years ago; he remembers. Then, he goes on to tell me that a co-worker of ours, Dion, had a stroke that morning and was currently in the OR. We discuss our shock and sadness that a man who practiced a very healthy lifestyle could be struck down by such a condition. I thanked Paul to sharing that news with me and sat, stunned, as I watched him walk back toward the OR waiting area.

I felt my stomach tighten again as my name was called. I can't help but notice that this round of PATs is so emotionally different from my PATs for the gastric bypass. I was so determined and confident going in to that surgery. This time, I'm determined but much less confident. The little kid in me is nervous and scared. I remind myself that I am a 41 year old man - I can handle this! But, as I sit on the tissue covered table, my mind starts to wander; I imagine what I will be going through next week - the IV needle (I don't do needles)...being wheeled to the OR...being put under...coming out of anesthesia...the pain...and, let's not forget the catheter! Snap out of it!! I find myself with about 15 minutes in between tests. I'm grateful for this time alone and I practice meditation/deep breathing techniques.  Learning those skills has been invaluable! After my final test, I am told that I am free to go. Gladly...

As I drive north on the highway, my thoughts volley between my upcoming procedure and the stack of work that is waiting for me when I return to the office. I can't believe how much this appointment affected me. I've been to Albany Med so many times and never had an issue!  Somewhere in my mind, I must realize that I am reopening an old wound - literally - and I am returning to the place where it all began for me!  As I struggle for control of my thoughts, I receive a "sign." The car to my right has Delaware plates that read "GRATFL."

Grateful! What a wonderful message! It is so easy for us to focus on what is wrong in our lives or what we don't have. When we do this, though, we unintentionally disrespect all of the things that are right in our lives! Talk about putting things in perspective... Here I am worrying about a procedure that I am choosing to have and, very likely, could leave my body more functional than it is today. Meanwhile, Dion (who has lived a very healthy life) has just been struck down by a stroke!

Yes...I need to refocus and be grateful for what is right in my life!

Entry 9

2010-09-04T13:15:00.004-04:00

9/4/10

PERFECTION...

Our society is so focused on perfection!  In many ways, perfection applies to our physical appearance...and our proximity to physical perfection determines our "worthiness" of being loved/accepted by others.  No doubt, it's a crazy concept but the message is relentless! It's everywhere - schools, magazines, TV, movies, computer...the list is endless! We are constantly bombarded by this message - often to the point of believing it subconsciously!

For us "hypospadians," growing up in a world that continuously equates physical perfection with love/acceptance can be heartbreaking! From the day we realized that we could never attain society's definition of physical perfection, we are forced to grapple with thoughts that no one would really be able to accept us...or love us... After all (let's face it), society teaches us that a man's physical self-concept should be built upon one thing - his penis!

*I just had to laugh to myself...I NEVER would have imagined talking so much about penises! LOL*

There are many things that we can control about our physical appearance - weight, muscles, hair, eye color, tattoos, etc.  But, we cannot change what we are born with! It's very difficult to make peace with this reality. Even though we may have some people who accept us completely and provide us with support, we are continuously haunted by society's definition of physical perfection - and it's correlation to our "worthiness." Honestly, I have a decent support system but my demon constantly tries to get me to believe that I am less of a man.

What I've learned along the way, though, is that we tend to scrutinize ourselves harder than other people do. We need to put more stock in ourselves/our support systems and less in our belief of the media message. After all, there is no such thing as perfection - for anyone!

My procedure is now less than 2 weeks away. I've been way too busy to entertain anxiety yet.  It will find me at some point, I'm sure. Admittedly, there is a part of me that would love nothing more than to wake up in the recovery room with society's version of the perfect penis! LOL However, I know that this is not going to happen. But...hey...a guy can dream, can't he??? In all seriousness, I am just hoping that I can finally get this fistula resolved! That would be a dream come true for me!

I am a big believer in the "things happen for a reason" philosophy. The reasons may not always be clear to me, but my experiences repeatedly confirm that I need to have faith in that belief. Faith has allowed me to let go of the things that are out of my control and focus on ways to make life better. I have found that, when I do this, I inevitably find a higher level of peace. It can be very easy to feel like a victim and get stuck in a very negative place (trust me...I've been there). But, over time, I have learned that if I focus my efforts on things that I can influence, life gets a little better!

As a "hypospadian," I have chosen to toss out the notion of perfection! It doesn't exist so there is no need to long after it! I am a person - not a penis. I am not perfect but I strive to be the best person I can be and live the best I can.

"Your future depends on many things, but mostly on you." - Frank Tyger

Entry 8

2010-08-28T08:55:00.001-04:00

8/28/10

Woke up to a beautiful morning here in the Northeast! The sun is shining...birds are singing...kids are playing...coffee is brewing...

My thoughts are of my Mom. Tomorrow would have been her 63rd birthday. I really can't believe that it's been almost 4 years since her passing. She was so young and taken from us too soon!

It's hard to explain to someone who hasn't lost a parent the type of void that is left behind. Growing up, parents are one of the "constants" in our lives - like the sun, moon, stars, etc. We develop a sense of security knowing that these things will always be there. After all, we've never experienced our lives without them - it's inconceivable! Until it happens to you...

The loss of a parent strikes at a the very core of a person. We are forced to accept another level of reality that we never could have prepared for. The innate security that we've come to rely on is threatened and our perspectives on life are irrevocably altered. I recall someone telling me that the 1st year after the loss of a parent is the hardest. I also recall thinking that they were full of crap! After all, how would I ever find my way out of this darkness that now consumed me? But, it happens. The feelings of longing and loss never go away. But, after you've experienced all of your "firsts" without your parent, it somehow gets a little easier. Though, that first year SUCKS!!!

I always felt that there was a special place in my Mom's heart for me! We definitely had a unique connection. I can still feel her love and pride to this day. If only she could see me now and share in all of the progress that I've made over the past several years! There's not a doubt in my mind that she is one of the forces behind my healing! My angel in heaven...

We never had a chance to really talk about how my hypospadias affected her. On the rare occasion that we did talk about it, I was usually consumed with the historical facts and events of that time. I've often wondered if she felt guilty for me being born with hypospadias - like she was somehow responsible for it? I'm sure she did...and it breaks my heart! I wish we would have had that conversation! The thought of her silently carrying around that guilt kills me! What I wouldn't give to be able to tell her that I don't blame her and it wasn't her fault...

So, for anyone doing battle with a demon, my message is - communicate! Parents, talk with your kids! Kids, talk to your parents! The parent-child relationship is never smooth and it constantly challenges us! But, sadly, this is not a constant (in the physical sense). Don't take each other for granted. And, don't wait till "tomorrow" because life can change quickly and "tomorrow" may never come.

So, talk to each other...love one another...and make the most of today!

Entry 7

2010-08-26T19:33:00.000-04:00

8/26/10

I've missed my blog!!! The past 5 days have been SO busy, I haven't had a chance to set aside enough uninterrupted time to dedicate to it. So, I'll apologize in advance as this may get long; there are several things that I'd like to share from the past several days...

Thing 1:

Last Sunday was a cold, overcast, dark, rainy day in the Northeast. It was a day that was perfect for blowing off all responsibility, staying in pajamas, and curling up on the couch to watch movies or get lost in a good book! I LOVE days like this when I can actually appreciate it in the way it was intended. But, my conscience got the best of me - we really ought to go to church...we really need to go school shopping (ugh)...

As we pulled into the church parking lot, I noticed the sign by the road that read "Hidden Halves." As someone very conscious of the duality that I've developed because of my demon, I silently chuckled to myself and thought, "This should be interesting." Little did I know but God had brought me to church that day so he could give me a good "talking to."  I am convinced that my pastor was the mouthpiece for a divine message that applied to the everyone in the congregation - but had a higher level of significance for me! In fact, at times, I felt as if the congregation disappeared and I was receiving a message that was specifically intended for me.

The message??? That we all have two halves - the one that we show the world and the one that we keep hidden. The half that we show the world exemplifies confidence, happiness, love, and morality. The other half we keep hidden because the secrets that we keep are so painful and horrible that no one would ever be able to understand our struggle or accept us. Pretty "spot on" for a hypospadian - well, this one anyway! He went on to describe a typical conversation where you ask someone how they are doing and they respond, "Never better!" even though they are at the end of their rope. Engaging in daily battle with my demon, I've been the "never better" guy more times than I care to count! The pastor went on to offer a new perspective: God wants our whole selves - not just the "good" half. He suggested that, by revealing our hidden half, we develop a greater connection with our higher power, attain a greater level of peace, and perform greater acts of healing for our fellow man.

From my experience working with HEA - this is DEFINITELY true!!! Over the past few years, I have challenged myself to share more of my "hidden half" with others. I started with my "hypospadias brothers;" each time I shared more of my true self with another, I felt a little more whole, peaceful, and secure. The cumulative effect of these conversations is significant. Although the battle with my demon is a daily occurrence, I continue to get stronger all the time. They say that war is won through a series of small battles - I'm gaining ground every day! I can honestly say that I am much less of an emotional cripple now than I was three years ago.  It's been a positive cycle for me; the more I open up and share -the stronger I feel to open up and share more! I've even been able to see how my sharing more with others has had a positive impact on them. Knowing that my pain can somehow make life easier for others makes it more tolerable and worthwhile...

It was clear to me that I needed to share my story with my pastor.  I can feel the momentum of my "mission" growing exponentially! There are forces at work here that are greater than myself. After service, I thanked him for his sermon and informed him that I felt he was used as a vehicle to provide me a special message. He was intrigued by my comment but it wasn't the time or place to really get into it with him; so, I told him I'd send him an email with my blog.

As luck would have it, I was at church for an Administrative Council meeting on Tuesday. Following the meeting, he approached me and we talked. I shared my story with him. He "got it."  I was embraced with understanding, compassion, acceptance, and admiration. He called me a "wounded healer" and was impressed at how I could take my pain and use it as a tool to help others.

"Wounded healer."  It feels fairly appropriate. If sharing my pain can help make life easier for others, then it makes it all worthwhile...

Thing 2:

While back to school shopping on Sunday, the inevitable occurred - half way through the store, the kids had to go to the bathroom! Public restrooms - just what every hypospadian enjoys (yes...that was dripping with sarcasm)! As my son and I walk past the line of urinals and toward the large stall, he comments he doesn't like using "those toilets" (meaning the urinals). He goes on to say that the reason for this is that he doesn't really know how to use them properly - he usually has to drop everything to his ankles in order to use it.  A shot to the heart...

As a hypospadian father with a son, I've always worried about teaching him the "manly way to urinate." How could I teach him what is normal if I'm not normal? Other men likely teach by demonstrating. That isn't an option for me. Other men may be more open with their bodies with their sons...not me. What kind of impact would this have on him??? I've often wondered if my demon would eventually find a way to make me feel like a failure to my son in this regard...well, he finally found a way.

I couldn't address my son's concern at the time; we still haven't resolved it yet. Guess I'm still a little stunned.  My demon can assault me all he wants but I can't allow him to attack my son!

Ugh! I need to figure out how to respond to this...

Thing 3:

I've been in touch with my doctor this week. My pre-admission testing is scheduled for 9/9 and surgery is 9/16. It's likely going to be outpatient surgery and I just learned that recovery will be about 7-10 days.

I haven't started getting overly anxious yet - though it's always in the back of my mind and focusing on things that need my attention is more of a challenge. I think the month of August will help me keep the anxiety at a distance. Once September comes, this will likely change!

Whew! Ok...I think I'm caught up now.

Entry 6

2010-08-21T08:17:00.001-04:00

8/21/10

It's been a crazy end to the week! 11 hour days are for the birds... lol

I got a call back from the doctor's office mid-week and was SO thankful to hear that he is planning on repairing my fistula!!! Though, the nurse did qualify that by stating that it will all depend on what the doctor sees once I'm in the OR.

So, it looks like I'm in for a cystoscopy, fistula repair, and the removal of this mass...

I have lived my entire life with this fistula. It has been my demon's biggest weapon and he uses it against me every chance he gets! It's been a daily reminder that I'm "not like other guys." After all...how many guys do you know that void out of 2 holes in their penis??? Just thinking about the possibility that this fistula could be resolved in the near future brings me to the edge of tears!

I am so full of hope right now! It's a little strange knowing that I will not realize if the doctor was able to perform that part of the procedure until the recovery room. But, I'm choosing to remain optimistic! It WILL be done! There's no room in my life right now for negative thoughts - I've got to remain positive! And, if anyone is willing to send some additional positive thoughts or prayers my way, I'll gratefully accept them!

This is such a significant time for me right now. I have often thought of what life would be like without this fistula but never thought that it could be a reality for me. During a visit with my doctor a couple years ago, he advised against surgery due to the amount of existing scar tissue and my morbid obesity. Not that I'm glad that I have additional symptoms now but I do see this as an opportunity to attain a level of peace in my life that I have not been able to feel before. God, I hope this works!!!

Not sure if I mentioned this before, but I am planning on writing a comprehensive book about hypospadias. For something so common, it is UNACCEPTABLE to me that there is still so little awareness and so much isolation! I am on a mission! And, I'm developing a growing addiction for writing. It seems as the stars are aligning for me with this project; I'm experiencing that rare overwhelming sensation of confidence - like my mission is in alignment with God's plan. I cannot fail! There is something inside me that is longing to be shared with the world.

Brace yourself...here it comes!

Entry 5

2010-08-17T19:33:00.001-04:00

8/17/10

Ok...have I mentioned that patience is not one of my virtues???

Man! And I almost pulled it off this time! I was so close too! I said I was going to wait until tomorrow before I started stalking the doctor...

But...I broke down and called the doctor this afternoon. The anxiety of "not knowing" was growing so I needed to address it before I lost too much focus on my daily responsibilities. I utilized my acting skills and approached the conversation from the angle of "I met with the doctor last week and he said someone would contact me; maybe it was an oversight but I haven't been contacted yet." I guess I could have taken the more honest approach of "Look, I know I'm being a pain in your ass but I'm becoming a nervous wreck and am tired of waiting - do you have a surgery date for me yet?"

Assertiveness paid off today! The secretary on the other end of the phone advised me that my surgery is scheduled for 9/16! She also informed me of the usual routine - pre-admission testing, call the day before for my arrival time, etc. I felt bad for the poor woman as I rattled off my list of questions and information that I needed from the doctor; I realize that I can be a lot to deal with when I am on a mission! But, hey, I have a lot riding on this surgery and I need to make sure that I have all the facts. This may be unrealistic but I am praying that whatever needs to be done can be done during this one procedure (and not lead to other procedures). I always have been overly optimistic!

So, now I start grappling with the anxiety of "knowing." I'm happy with the date and am convinced that this procedure will not affect my ability to attend the HEA conference in October. Currently, my abundance of hope for a positive outcome is warding off any fear of the pain that is to come!

Entry 4

2010-08-17T07:02:00.004-04:00

8/17/10

"You're not like the other guys."

I've heard this painful compliment so many times in my life! If they only knew just how right they were!

This phrase popped into my head yesterday during my commute into work. And, it's been hovering around in there since so I'm taking it as a sign that I should write about it...

It's true...I'm not like other guys - in more ways than one! Though, I've usually heard this said to me for my ability to empathize with others. You see, developing the ability to hear more than is actually being said and observe the behaviors of others to decipher their true intent was all part of my secret agent survival training. But, it's my ability to demonstrate empathy with others that has kept me from being detected and kept me alive in the trenches all these years!

I realized at a pretty young age that offering support to others would result in some form of acceptance for me - not that I ever really felt that I could take stock in that acceptance. After all...who could accept the real me? I'm a freak! But, on some level, the "lie" was comforting. And, hey, I was lucky to get what I could get. So, I continued to develop this skill. It's now one of my greatest tools of self preservation! The ability to demonstrate understanding for others, and provide them with comfort, is what keeps me off people's radar. No one would think to look any deeper into someone who is providing them with such a great service!

Looking back on conversations with others, they are typically one-sided (by my design). I couldn't trust my demon to anyone else - it was too powerful! It was my duty to protect others from it! I am convinced that people must have thought that I was so strong because I hardly ever shared any of my struggles with them. That's me...a "rock!" Oh, if they only knew the truth! I am no where near as strong as people think I am. Acting is also part of the secret agent survival training - didn't I tell you??

Regardless..."the Golden Rule" has been a great way to live! I do not resent my training and actually love to provide support for others! My hypospadias has motivated me all my life to treat others as I would want to be treated - if I let them! I am convinced that we all have deep seeded struggles and world is difficult enough. We need to support each other as much as possible! We are all in this together!

"You're not like the other guys."

While this is a painful reminder of a physical truth that I struggle with daily, I wouldn't trade my ability to empathize for anything! So...OUCH! And...THANK YOU!

Entry 3

2010-08-14T20:33:00.001-04:00

8/14/10

Ironically enough, I spent the entire day yesterday with some of my fraternity brothers. Yes...me...a "frat boy!" Who would have thought? A boy who grew up strategically distancing himself from his male peers throughout his developmental years chose to immerse himself in the world of "normal" men at the age of 19! What was I thinking?

Maybe it was the "secret agent" in me? The challenge of successfully integrating with these foreigners - observing them...studying their culture...interacting with them - all without being detected! Kind of like espionage.  LOL Prior to this time, I was able to safely keep my distance from this alien species while still under the protection of the family keep. I didn't realize it at the time but, along with my high school diploma, I was also issued a "passport" that would force me to explore the world of men!

And, a challenge it was! Being under the pledging microscope...living in their world 24/7 for 4 years...gaining acceptance within the male community... and developing some relationships that have lasted a lifetime - all while successfully keeping them from knowing the real me! It was not easy maintaining my "cover" while living in a mans world. At best, I could get to the point of feeling like I was 85% their equal; historically, I've always felt like I was less of a man.  I could eat, drink, joke, slack, and lead with the best of them! However, there were 2 main areas where I always fell short - I continued to avoid the gym/sports and I was a sexual cripple.

Most of my fraternity brothers hit the gym on a regular basis or participated in some sport or other. Some even tried to get me to go with them (God bless them)! They simply had no idea how strong my demon was and just how powerless I was against it!  During a time when most men are caring for and toning their bodies, I continued to abuse mine. After all...why bother, right?  I'm already damaged goods. Nope, I only went to the athletic hall when I absolutely had to!  And, I made damn sure that I selected PE classes that were not overly strenuous and would not require changing or showering!

The "down town" scene was probably the most painful of all. At a time when everyone is developing their best pick-up lines, honing their hook-up moves, and engaging in all kinds of casual sex, my demon taunted me. I was forced to watch but never participate. You see...for me, sex was a lose-lose. If I were to take that risk, approach someone, and get turned down, it would only reinforce the obvious - I am not worthy of being loved. However, if I were to take that risk, approach someone, and succeed...well, then I would be forced to expose my deepest secret first and then get rejected. I felt bad enough about myself and my body; I didnt need the assistance of others to help me feel worse!  So while everyone else on campus was engaged in the right of passage known as hooking up, my demon continually reinforced my belief that I was less of a man and not worthy of this pleasure. So...I continued to drink excessively and over-eat. I may as well have a good reason for not being a hook-up king, right???

Wow...that took an unexpected negative turn! Sorry! This started off being a positive entry; lets get back to it...

Speaking of my college years - better sit down for this one - my major was psychology! Go figure, right? LOL I was not brought up with the expectation that I had to go to college.  My older sister was the first in our family to go to college. If anyone set the expectation of higher education for me it would be her; and for that, Im eternally grateful!  I was always a pretty keen observer of other people and their behaviors but studying psychology allowed me to understand the "whys" and the "hows" of it; connecting the dots if you will. And, it allowed me to apply that understanding to myself. I now had another layer of self-awareness and self-perception. For the first time, I was able to contemplate the question, "Maybe I am worthy of being loved?" Not that I actually believed it at that time, but allowing myself to consider it was a big step! So, after graduation, I focused on social work for children; I wanted to be the resource for them that I wished I had.

I guess the time spent with my fraternity brothers yesterday allowed me to reflect upon my college years - both good and not so good experiences. I am grateful that I had the fraternity experience with this group of guys; their acceptance had allowed me to fortify the foundation of my self-confidence before heading out into the world. I have learned so much from them! I am also grateful that I had the opportunity to go to college and study psychology. From that point forward, I have able to start viewing myself in a more loving and empathetic manner. It's a daily struggle for me but, at least, I feel that I have the weapons necessary to fight the good fight!

So...tonight...I am feeling grateful. :)

Entry 2

2010-08-12T17:31:00.001-04:00

8/12/10

In re-reading my prior post, I realized that I should clarify something...HEA stands for Hypospadias and Epispadias Association, Inc. (http://www.heainfo.org/). My appologies for any confusion there...

Well, the phone didn't ring today! DAMN!!! I am normally a very patient person - but not with this! I want to have a date so I can start to mentally prepare. Until then, I feel like I'm in a state of limbo. Mentally, I realize that there is some coordination that has to take place on the medical end before this can be scheduled. Emotionally, my inner child wants to start throwing a tantrum! LOL I'll give them until next Wednesday to get back to me. If I don't hear anything by then, I'll start "stalking." :)

I am attending the 2010 HEA conference in San Antonio this October. I really need to be there and hope that this procedure can take place prior to that. Hopefully, this will all play out well and will not prevent me from attending. Even if the procedure needs to take place in several stages...God, just let me get to San Antonio! I need some time with my "brothers!" :)

Entry 1

2010-08-11T21:46:00.001-04:00

8/11/10

I am a mix of emotions right now. I met with my urologist this morning for an examination of some unusual symptoms...

I am a 41 year old male born with peno-scrotal hypospadias. I underwent 4 surgeries before the age of 5 years old. The outcome was a wide sub-coronal meatus (opening) and an unresolved fistula at the original meatal site. The only memory I have of these surgical experiences is the intense fear I felt while a black rubber ether mask descended upon my face - THIS is my earliest childhood memory. Interestingly enough, I have no other memories from my surgeries; I’m convinced I blocked them out. The unresolved fistula has prevented me from being able to use a urinal like other males.

I grew up in a small, rural, upstate NY community. My parents never really talked with me openly about my hypospadias. They loved me very much but I suspect that they were uncomfortable with it and, likely, didn’t want to make me uncomfortable by discussing it. Yet, somehow, I always knew that I was different from other boys; I also knew that being different would make me a “target.” As a result of my hyper-awareness (both of myself and my surroundings), I developed many strategies for self-preservation at a very early age. My main objective was to “fly under the radar” and not draw attention to myself. But, as a human (i.e. social) being, this wasn’t easy. To help me accomplish my goal, I developed 2 selves – what I call my “social self” and my “true self.”

I am the king of acquaintances! I can be extremely friendly with all kinds of people but never really belonged to any certain clique and never – ever – let anyone get too close. I developed into a keen observer; I would always take my time to assess people and my surroundings before approaching anyone or engaging in conversation – I still do! Whether it was playing “forts” in the woods, sports, or camping with other boys, I always had to be conscious of my difference and where the closest bathroom was. I never had to pee outside when the other boys did ;) but always seemed to find a reason to excuse myself back to the nearest location with a bathroom! I also became obese at a young age and used my weight to keep others at a distance. Toileting in school was like planning a bank heist – it had to be timed just right so that no one would see me going in, taking care of business, or going out! And, showering in the high school years…ugh! They say the “squeaky wheel gets the grease;” well, the opposite is also true. I made sure I was a “good” (i.e. low maintenance) kid and a decent student - this enabled me to keep my parents and teachers at arm’s length! I spent years developing a “social self” that was the epitome of a conservative, self-less, humanitarian. But, that’s my “mild mannered alter ego…”

Self-isolation has a heavy price but it’s what I used to protect myself from those who couldn’t understand me or wouldn’t accept me for having hypospadias. After all, growing up believing (until I was 28 years old!) that I was the only one affected by this…how could anyone understand or accept me? Only I could really understand what it was like and accept my “true self!” After all…who could really love a “freak?” So, most of my life has been spent withholding the real me from the world - keeping others at a distance…constantly assessing and reassessing how much of myself to share with others…making sure that people never get too close to the truth. It’s exhausting! And sad…knowing that those who love me don’t even know/love the real ME (because I haven’t let them)! Trust issues…yeah, I’ve got them!

Letting my wife “in” when I was 26 years old was the hardest thing that I had done up until then. We had reached a point when our relationship was either going to take the next step or I would need to end it (in the name of self-preservation). Behind a veil of tears and shaking uncontrollably…I disclosed my “secret” to another for the first time. To my surprise and relief, she responded with support and love!

Suspecting that we would be battling infertility (damn, I HATE being right!), I started asking my parents more questions about my surgeries. I also requested copies of my medical records for my hypospadias related surgeries. For the first time, I learned that my “birth defect” had a name – HYPOSPADIAS – and that I was not the only one in the world who was affected by it! There were others?? Who?? Where?? I’ve gone nearly 30 years and never had an inkling that anyone else could have had this! Needless to say…I was floored!

However, life got in the way (as it inevitably does) and it wasn’t until I was 38 that I started facing my personal demons. It took the passing of my Mom (at age 59) for me to realize that life is too short! It occurred to me that I lived the first half of my life controlled by the isolation and fear of my hypospadias! It was time for me to reclaim my life! My Mom was my main source of information regarding my surgeries, and now she was gone! I did gather the courage to talk with my Dad more about that period of my life. I was amazed to learn that my parents mortgaged our house to get the money needed to pay for my surgeries (as we did not have health insurance)! Words can't begin to express how much that act meant to me...that they would sacrifice what little they had - for ME! This is also when I found HEA. For the first time in my life, I felt like I belonged! For the first time in my life, I didn’t feel different! For the first time, I felt that others truly understood my fears, my shame, and my sadness. I had lived under the dark cloud of hypospadias for too long! I made a commitment to myself to learn as much as I could about my demon and challenged myself to reach out to as many “brothers” as I could. I am an open book to my “brothers” and try to lead by example. My new mission was to make sure that no other person grew up feeling (or currently felt) as I did – needlessly! That’s why I became actively involved in HEA! As I began accepting myself, I started a process of “selective disclosure” to introduce close family/friends to the real me.

It wasn’t until 3 years later that I finally started addressing my weight demon. Now that I was opening up about my hypospadias, I no longer need my weight to shield me from society. This year, I made another commitment to myself (and my family) – to become healthier! This meant losing weight and exercising more. Though, at 336 pounds, I knew I couldn’t do it on my own. On April 14th, I underwent gastric bypass surgery. I am now down to 255 pounds and walking 2 miles 5 days/week. I am now healthier than I ever recall being!

Which brings me to today…I scheduled this appointment with my urologist because I had noticed a long, thin mass “floating” under the skin on the underside of my penis; I first noticed this in March of this year. I also started to notice that I was starting to leak a little bit of urine. I had hoped it would just go away (like that would really happen). I got distracted with my gastric bypass surgery and recovery shortly after that. In June, I started noticing blood in my semen. Again, I had hoped that it would just go away (since that course of action was so effective the first time!). After a month, I was still seeing bloody semen. It was time for WebMD! Cancer showed up on my radar – not good! Yep – it was time to break down and make the Urology appointment! Upon my arrival at the office, my “white coat syndrome” was in full effect! My anxiety was high and it showed. I tried to convince myself not to assume the worst and to just be satisfied that I will finally be getting some answers. Following my examination, my Dr assured me that this did not appear cancerous. He informed me that men with hypospadias have a lesser chance of getting prostate cancer than other men due to the androgens involved with hypospadias. Well, at least there’s a silver lining to having hypospadias! Though, he also said that the mass and the leaking was concerning. He really couldn’t say for sure what it was (it could be "calcification"?) or determine the integrity of my previous surgical “repairs” without performing surgery to examine my urinary tract from bladder to meatus. I have a lot of scar tissue and he makes it clear that it will make the procedure more difficult. He also advises that he will request the assistance of the head Pediatric Urologic Surgeon (who I have researched previously and am very satisfied with) in the practice. I believe that surgery is the right course of action at this point. He said the office will be in touch to schedule the procedure.

As the day goes on, the mixed emotions start to rise within me. I’m terrified of the emotional triggers that this impending procedure can aggravate. Will this course of action bring on “flashbacks” from my earlier surgeries that I had previously blocked out? The physical pain is scary but the potential emotional fallout could be so much worse. I’ve always been in control and this surgery threatens that. On the other hand, I have reached a point where I need to have my hypospadias “repair” looked at again. I know that it’s unrealistic to expect that the new “Mr. Johnson” would be pursuing a new career in modeling – but I am praying that I will, at least, have an outcome that will allow me to urinate while standing. God…what I wouldn’t do to be able to use a urinal! Pretty sad, huh? LOL

So…now I wait for the phone to ring…