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Santa’s Sleigh

December 27, 2011

So I know, no post in awhile!  I’ve really had nothing to say.  I mean, things are going well.  I have broken the terrible cycle of UTIs.  My doc says my surgery looks great and I got an ideal result.  I go longer and longer periods between appointments.  I continue to sleep with my stent in 2-3 nights a week.  AND I continue to look for someone to test out the new equipment. 

I think it goes without saying that how my new vagina works in a real life situation is the only thing missing.  I’ve been feeling really frustrated to say the least.  I had been seriously looking for a one night stand.  I really just wanted a man to stick his penis in my new vagina so I could make sure it would fit and to see how it would feel.  No love.  No lust.  Just a crazy science experiment.  I did actually have a few offers recently which I turned down.  I actually needed to like the person who would assist me on my persuit, and to not feel like a dirty hooker.  Who knew??  As dating goes, mostly we wait and look and then things change.

So after that drawn out intro…..my big news is:  I HAD SEX!!  I am no longer a virgin!!  My new vagina works!  Who is the lucky gent?  I met him on a santa bar crawl when of course I wasn’t looking at all.  We have some crazy physical chemistry.  We didn’t have sex that night, but after we went on an actual date a few days later.  He of course knows nothing.  He hasn’t even noticed my red square on my ass.  I told him it had been awhile and I was tight and he needed to be careful.  He agreed I was tight and was really concerned about hurting me.  The first time hurt a little.  I wanted to know what would hurt and what wouldn’t and so I didn’t say anything.  Aside from the living breathing human telling me how tight I was and how good it felt, his penis with a condom on it feels very similiar to the stent I put inside.  The feeling of being pysically attached to person is a whole different story.  

The best part of this story is that it hasn’t ended yet.  He and I are enjoying getting to know each other in and out of the bedroom.  We have a lot in common.  We’ll be going out again.  I feel remarkably normal!  I feel just like any other 30 something looking for love.  I laugh out loud when I think about how normal this all is!  All I have to worry about is him wearing a condom.  It’s *so* normal!!  He asked me if I was self conscience about my body.  I told him no.  I mean, I FINALLY have a vagina and he can’t even tell it was never there to begin with.  What the hell is there for me to worry about.  For the first time ever I can be with a man and truly enjoy it!  For the first time I can worry about what feels good to us both and do what I want to do and not worry about him discovering my little secret.  I feel light as a feather!

He’s mentioned that I seem so sane.  If he only knew the path I took to gain my mental health.  At this point, it was all worth it….every drop of bloo sweat and tear!  Even if he’s not the one, I feel more and more like there might be one out there for me.  I finally feel like I’m living the life I’m supposed to live.  Talk about an asweome christmas present!  The funny thing is that I think he feels the same about me.

My question now is what to do with this blog.  I will leave it up forever.  I’m not sure I’ll have much more to add.  I guess we’ll see as time goes on.  I do want to stress that no matter when you reaad this….one month….one year…or ten years from now and you or your daughter or sister have questions for me, my email box is always open.  I cannot stress the strength I drew and continue to draw from a woman who braved this path before me.  I only hope that I can pay that support forward one day.

Thank you for reading, and for all your comments and prayers along the way.  May we all find our way down the path to our personal legend.  2011 has been by far the best and most difficult year ever!  HAZZAH!

❤ RisingPheonix

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My Lemonade Stand

May 18, 2011

Well, it’s been awhile since I posted.  There has been some activity on the MRKH yahoo group specifically about the McIndoe procedure and links to my blog, so it’s time for an update.

The SUPER news is that my doc is super super please with how things are healing.  At my last visit she told me I was doing a great job.  I needed to hear this.  My efforts and vigilance feel very validated.  I will keep on keeping on.  At this juncture, I have been cleared to have intercourse, and am dilating and wearing the stent nightly.  The doc gave me the green light to leave what I refer to as my “clinic” (all the tools I use nightly including the dilator and the stent) home if I go away for the weekend.  She did make it clear that while there is a light at the end of the tunnel, I need to be careful not to get behind the 8ball.  She did say if I was having sex 2-3 times a week I wouldn’t even have to be doing any of this anymore.  LOL too bad I’m not.

She also said my name came up with the fellow.  They have a prospective Patient who was sure she could insert the stent, but not inflate it.  Since they all know I use salad tongs and a tool I made myself to insert my stent, and can also inflate it myself, they were frustrated with this gal.  The fellow said to the doc “If she (meaning me) can do it, so can this gal”.  I told the doc I would be willing to talk to any of her prospective Patients if they’d like to meet someone who has walked down the path.  I really feel compelled to share my story with other women who stand were I was 6 months ago.  Like I have always said here, if you or your daughter have questions, feel free to contact me.  In private, no question is too private.  I probably was wondering the same things.  I will forever be grateful to a fellow a MRKH woman who answered my questions and continues to be a support for me.  Although she may not believe it, in my eyes she will forever be an angel.

The not so good news….and why I’m trying to make lemonade from my lemons…I’ve had a chronic UTI for the last 3 months.  I honestly think this was brewing in the hospital.  Unfortunately have a foley really raises the chances on getting one of these suckers.  On my 4th round of antibiotics, I called my surgeon for advice.  She ‘s going to manage what she can and refered me to a urogynocologist in her group.  THAT doc is also a female and should at least have a clue about the surgery.  I honestly think the right drug will take care of all this.  I’m hoping by the end of next week….I really want a beer.

I met someone who I thought would be my summer fling….until he told me today he met someone else. I cannot express how much I want to have sex and feel like every other woman in her 3os.  Today meeting someone feels impossible.  6 months ago I would have blamed all this on my non-existent vagina.  Today it just seems meeting someone half decent to keep around as a fuck buddy/summer fling is too much to ask. 

Since there has been activity on the yahoo group, I want to add this piece of advice today.  Surgery is not the easy way out.  It is just a different way out.  The McIndoe procedure requires vigilant aftercare on the patient’s part for AT LEAST 6 months.  Your surgeon makes the vagina, and then YOU have to maintain it.  There can be bumps in the road, and your vigilance will assure bumps are just that and they don’t become mountains to be climbed.  I am willing to do just about anything to make sure the surgery is a success.  Are you?

Looking forward to adding some sugar…and maybe even some vodka to my lemons

<3Risingpheonix

Green means go

April 1, 2011

So I had a doctor’s appointment today and I am full of good news.  She says I’m good to go.  She told me to find a boyfriend.  And it’s what she said next that sticks in my mind.  She told me he’ll never know anything is different.  She told me the only thing I’ll ever need to tell him is that I can’t have kids, and I can say I had a hysterectomy.  She said the only thing I may need to explain is the huge red square on my ass.  Tell them you sat on something….that was the advice from the nurse in the room.

I am overwhelmed with relief and happiness.  I have been crying tears of joy all day.  I can finally relax a little.  I can look for a boyfriend!!!  Dating can be fun rather than the inevitable countdown to me telling him we can’t have intercourse.  What do I do now?!  I think break the alcohol fast with a celebratory drink! 

Life is good.  2011 is the best year ever!

<3Risingpheonix

Walking the road less traveled

March 24, 2011

I’m never sure when or how to update this these days.  I suppose when there is news to share.  I’m about 6 wks post op at this point.  I went back to work last week.  I just jumped in full time.  Talk about a lot really fast.  I still really feel like my own medical situation is critical and any mis step off the treatment plan on my part can lead to faliure of the procedure.  Of course, I continue to walk the line.  I just underestimated the amount of emotional energy I was spending on all of this.  I am responsible for people and their safety at work and all this responsibility wore me out.  It was all I could do to work all day and come home.  Forget about cooking.  Thank goodness for my mom last weekend.  She brought me food to last me through this week.  I think just the fact this has been taken care of decreases my stress exponentially. 

Last week at my follow-up the doc said out with the pessary.  I was experiencing blood in my urine and was extremely constipated.  I think all of this was related…she kinda doubted me.  She also gave me the “medium” dialtor to insert so that the bottom of my vagina would remain open enough.  The thought was a little daunting.  The dialtor is bigger than the stent and had barely any taper….and is hard as a rock.  I prayed to god I good get this huge thing in that teeny whole.  I did.  <sigh of relief>.  I do have to say that Astroglide is working far better than the KY jelly the doc gave me.  My gay friends know their lube! 

Today, I am off work. I had the pessary removed.  They did it with me under twilight since in hurt so bad going in.  I really appreciate the doc’s compassion and willingnss to put me under.  The new plan of care is to use the rock hard dialator first and then insret the stent all at night before bed, sleeping with the stent inside me.  Immediately after I woke up I was dying for the bathroom.  A possible side effect of the pessary is retaining urine.   It looks for sure like I was doing this otherwise I shouldn’t have had to go so badly.  After weeks of feeling less than OK about having a BM, I had one of those too.  And it felt normal doing it.  Thank god for small favors.  Ironically, the new feeling in my vagina is disconcerting.  I don’t exactly know how to describe it.  I mean, there’s been something inside me where nothing was before and now there is a space for something, and nothing is there.  VERY strange. 

In other good news, the graft site is healing well and feeling good.  I’m still not wearing jeans for fear of a skin tear.  I am also feeling much better.  Still not 100%, but maybe 90%.  I think if next week’s visit to the doc brings good news, I’ll be feeling even better. 

I thought the emotional journey to the surgery day was a difficult rocky worthwile trip.  I didn’t really anticipate the journey after the surgery to be difficult as well.  I do feel much stronger, much “better”, whole, more positive, and looking happily to the future despite all  my recent challenges.  So far EVERY minute has been worth it.  I think I’m ready to start being open for dating.  By the time I find someone, I should be open for business shall we say. 

Man! What a journey this continues to be!  I hate when people refer to me as brave, or strong, but now I feel a little more worthy of those adjectives.  This whole journey was inconcievable to me a little more than a year ago.  I can honestly say I’m pretty proud of myself for looking the thing I was most scared of  in the face and doing it….and continuing to do it…as more scary medical things come my way I’m keeping my nose to the grinstone and getting the job done!  Soon enough, the only person who ever knew anything ever happened will be me…..OK and y’all know too, but you get the idea.  🙂

<3RisingPheonix

Reaping the benefits

March 11, 2011

As a testimatent for myself and a testimonial  for others contemplating walking down this path, I will update on recovery.  Things are well.  At my last dr appt she was so pleased with everything she’s letting me go 2 weeks until she sees me again.  I can still feel the pesary inside of me daily.  It moves a little so some days are more comfortable than others.  At worst it is a bother, but not painful.  I continue to clean myself daily.  I am still using a mirror, but it’s getting easier to get that little tube into the right place.  It’s amazing.  I can easily label a diagram of a woman, but after a lifetime of not having a real opening “down there” I’ve really had to pay attention to where I put things, and that mirror has been a saving grace.  I am also still putting the antibiotic gel “up there”.  I admit hating this.  I don’t like the way the applicator feels inside me and I don’t like the feeling of the gel squirting out of the aplicator, but once it’s in, I’m A-OK.  This past week also brought another joy of womanhood: a UTI.  Honestly, I’ve been brewing that sucker since day 6 in the hospital, I just didn’t know it.  With so much going on, it’s hard to discern what is normal or abnormal, or “new” normal.  I’m on the mend now.  Honestly, a few days on the drugs, and I feel almost normal…pretty damn normal in fact.  It’s an interesting place for my mind.  Everything is VERY different, but I feel normal.  I go back to work next week.  I’m a little nervous.  My endurance is still less than it was, and I’m sure it will improve, and I still have 4 more days. 

In my usual style of how all this makes me feel:  To sum it up I feel like the woman I am supposed to be and that I can lead the life I choose.  I feel like my body matches my mind and soul.  It’s amazing!  I want to be girlie.  I bought a shirt with flowers and a dress last weekend.  I want to wear make-up.  I want to buy nicer shoes….heels for summer.  I don’t think it’s a phase.  I never really truely felt like I woman before.  I felt less than.  I felt like I was missing all the parts needed to really make me feel complete. 

I’m a little nervous about starting my new life.  I closed up shop around Christmas leading a pretty boring existance compared to my usually jam packed social calender.  Granted, I’ve been out of the house, but not quite myself.  I’ve had to worry about people running into my butt (the graft site is still sore), whether or not there will seating, and how far parking is from the door.  In this year of being positive, gracious, thankful, and I’ll even throw in brave, I wonder how people will respond to the new me.  I wonder how men will respond.  Right now I’m still wondering.  I’m unwilling and I think a little overwhelmed by possibility so I’m not ready to try it out.  My own body is still a little like my own science experiment.  I’m unwilling to try ANYTHING….even by myself. 

Usually I cry when I write these posts.  These days I am just excited….or I might shed a tear, but of joy cause the best is yet to come!

❤ Rising Pheonix

This pheonix really IS rising

March 1, 2011

So here it is, the BIG update.  The surgery is over and I am home safe and sound.  I really intended to update as I went, but honestly, I wasn’t feeling well enough until this week. 

First and foremost I have nothing but GREAT things to say about my doctor and her fellow who is following my case.  The doc is my hero and I wish I could be friends with the fellow.  I didn’t think docs like this exsisted anymore.  They treat me like a person with a problem, and not like a problem with a heartbeat.

Next I have nothing but love and thanks in my heart for EVERYONE at Johns Hopkins who helped take care of me.  I am overwhelmed by their kindness.  It started with the PACU nurse who helped retrive my personal pillow and chatted with me during my long wait for a room.  It continues with the nurses and aids night and day who brought me what I needed and helped in seemingly little ways like putting a sign on the door to keep in open.

I guess now is the part where I include things I wanted to know.  I feel this is a change from my usual style, but I am attempting a bullet list.

*The surgery hurts.  Period.  I mean they shaved my whole gi-normous butt cheek for the skin graft and shoved a huge stent inside an orafis that didn’t previously exsist.  They also put a tube up your urthethra (a foley catheter.  It collects your pee in a bag while you’re on bed rest)  For me, the foley was the worst pain, followed by the graft site.

*Pain pumps are amazing!  They hook the good pain meds (for me it was dilaudid) to a pump and you can hit the pump at regualr intervals.  This gives you AMAZING control over how you feel.  I hit mine 1-2 times an hour.  I could have hit it every 10 min.

*Bed Rest:  You’re on it.  Be prepared to let everyone know. Be prepared to follow it yourself.  It’s vital for an ideal outcome and your responsbility starts here.  Part of this is STRICT bedrest for 7 ish days.  Ideally that means flat.  Yeah right!  Too flat for me!  I compromised at about 15-20 degrees which was ameanable to the doc and comfortable to me.  People will try to get you to sit up for all kinds of things.  Advocate for yourself.

*Clear Liquid Diet:  Yup it sucks.  Get used to it.  I recommend thinking of that drink you LOVE.  You know, your guilty pleasure.  I stockpiled Chic-Fil-A sweet tea and my mom brought it to me daily. 

*Advocate for yourself:  Everyone wants to help you, but sometimes you need to tell them how.  It might come in the form of repositioning the foley.  It may also come in the form of someone using extra care.  I required a chest X-ray. The tech wanted to put the lead blanket over my stomach.  I asked him to do it gently, and he moved that thing like it was light as a feather.  Bless him.  Ask to be comfortable….hotter, colder, drink something hot or cold, etc etc.  Try to thank folks.  Sure, they work in a helping profession, but they need thanks too.  It means a lot to them. 

So going home is where things really get interesting.  You’ll need help…at least support 24/7 for a few days.  Your body is wrecked.  I couldn’t walk from the front door to the back wthout a rest.  It took all day to rest up in order to shower. I am *still* withdrawing from the pain meds.  The night sweats sucked.  The 1st night my mom had to change my sheets once and bring me a change of clothes 5 times.  There’s no way I could have done that alone! You and your help now has all the responsibility of dressing changes on the graft site and managing the stent.  I had major drama.  I woke up on a Sunday morning to find the whole stent in my underwear.  My short arms makes the stent challenging to manage anyway, but I couldn’t get it back in me.  I was panicking!  All I could imagine was my vagina healing and closing like a piercing.  1 phone call with the resident on call and 1 emergency trip into the office later, everything was back inside me.  2 days later, I try to have a BM and instead push out the stent.  Calmly, I DO manage to get it back in.  Before bed, it falls out again and won’t STAY in.  Back in the office in the AM.  Ugh!  My Doc rocks!  I feel  bad for using her time, embarrased and frustrated and stressed.  She told me before the surgery I would ask to be a nun at some point.  This was the point.  She told me not to worry.  She hates people who give up, not the ones who stick with it.  She put something new inside me.  Something that would NOT fall out.  It’s a test, but it seems to be working.  It hurt like a bitch going in.  There’s nothing like hearing a doc say half way through a procedure “next time I do this it’ll be in an operating room”  YIKES! The pain was well worth it, I am much more comfortable in the long run.  I still clean myself daily with a little syringe in the shower and insert antibiotic jelly at bedtime.  Having said all that, I sent my mom home 7 days after being out of the hospital.  I am not fine, but I am driving and showering, and able to heat up my own meals.  I still have low energy and am accepting help for laundry and cooking.  I average 1 nap a day and am trying to leave the house daily to increase endurance etc etc.

Here are the crazy, unexpected side effects of all this:  I feel like a real woman for the first time EVER.  I have something inside my vagina because I HAVE a vagina.  I’m spotting.  I’m wearing pads.   It will not last, but I KNOW what it’s like.  Dilating wouldn’t have given this experience, but I’ve always wanted it and for now it’s  priceless.  In 3 little weeks, I can have sex.  I don’t have anyone to have sex with, but I could just have sex.  No more dreading having to get to the “we can’t have sex” talk.  I feel an immense sense of relief from the burden of that secret.  I don’t even care about the HUGE red angry graft sight on my ass.  My guess is he won’t either if he’s going to get to have sex with me.  🙂

There’s a long way to go before my body is fully healed…and my heart still has some work to do too, but this pheonix truly is rising from the ashes as something better and more beautiful than before

<3RisingPheonix

Can MTV be educational?

January 21, 2011

So in all this business of me and my surgery, MTV’s True Life releases an episode entitled “I can’t have sex” about young women who clearly can’t have sex.   Of course I am curious and it did come recommended by another MRKH lady.  I was curious if I would relate to these girls and how MTV would spin this sticky subject.  There had been a little chatter months ago in the MRKH yahoo group regarding casting for the show.  Most girls agreed MTV couldn’t be trusted, there was too much to risk, and they didn’t want to be the face of MRKH.  What would I think?  Skeptical, I found it on line and watched.

 Oddly, I don’t really relate of feel akin to any of the girls.  Most of them had already had a serious reltionship, or were currently dating.  None were virgins.  All were younger.   I wanted to feel like I was one of them, but I didn’t.  No fretting, my Oprah style “A-ha” moment came later.

One of the featured women was recounting her story to a therapist.  The therapist tells her that her health problems have all the power and that she needs to take it back.  “A-HA!”  For me the tears just came at that point.  This is SO true.  I’ve heard MRKH referred to as the hell that keeps on giving.  It occured to me, MRKH has so much power over me….and probably with others too!  MRKH takes away our power to make choices taken for granted by others:  when…and even IF to lose our virginity….when and if to have children….or even how to NOT have them.  It forces us to make decisions others will never face:  Do we seek treatment??  To have surgery or not?  Do I trust this doctor or not?  Should I tell my friend or partner this detail about me, or not?   

BUT (and I continue on my new vien of optimism in the new year) I feel like I am taking my power back.  After a life time of my mother making medical decisions for me, this time she is not in the driver’s seat.  I picked this doctor, I picked this surgery, I picked this date.  I feel more in control of my body then ever.  As I hand over complete control to almost strangers and pray to god everything goes as planned, I ironically feel in control.  Thx to all this…and a good therapist, I feel more and more like a pheonix rising from the ashes….kinda excited to see what’s out there when the smoke clears 🙂

I think there is a lesson here for mothers and daughters:  Control is important.  Moms, let your daughters decide what is best for them and support them, even if her choice would not be yours.  Open the dialouge to help make the decision.  I’m not sure any 16 yr old dealing with this diagnosis is in her right mind.  Information is power.  Thank god we have the internet to connect with people and learn about how others cope.  yup, knowledge is power, and control is important.

In a more practical update:  I am VERY close to D-day….or as my roomate is calling it “BNV day” (brand new vagina).  With my employer, short term disability papers need to be filed 2 weeks in advance.  It’s taken quite a few calls and some butt kissing and polite pressure to get them back from the doc, but they are done. I am steam rolling right to the place in the blog, I wish someone had left for me.  The dirty details.  I have to stop drinking after this weekend (yup going out to mark this date).  I have 1 appt to sign the consents with the doc and a pre-op.  Clear diet and bowel prep starts at noon day before.   Right now, my goal is to write again while I am at home “preparing” and as often as I can in the hospital.

Keep sending those prayers.  I’ve got a really big day coming up…sooner rather then later!

❤ Risingpheonix