Thoughts On A Cloudy Day

This is intended for those coming after, so apologies if too much information.

I posted in a previous blog that part of your recovery is dilation. I am doing okay on this. I have moved to the blue one, three times a day. Recovery is going pretty well. I do have a bit of discomfort, especially if sitting upright for a bit. I find that if I can recline it takes some pressure off. The pain can be described as more of a pinching kind of pain. Cindy thinks it is due to the healing and things tightening up. I did find the spot where I must have popped a stitch at one time. It is healing, but I will have the PA check when I go for my follow-up next Monday.

I am slowly getting back into a routine. I do have to set time aside for “PT”, but getting there. I have been going to the market and doing the laundry. I do note that after being in the market for a while, I am pretty done in and hurting. Pain is managed with a couple of extra strength Tylenol. Hopefully, after next week, I can start doing a bit more. Cindy has told me that we will switch jobs for a few weeks and I will feed and she will clean. The poop does get a bit heavy, especially after a rain.

We are still on baby watch with Jitty. Hopefully any day now.  We have had six cria (babies) born on the farm over the years. We lost Hermione due to birth defects, but the rest are doing well.

So slowly things are returning to normal. We have even managed to go out to dinner a few times. I did have to leave early from our last. We sat on wooden chairs which was a bit uncomfortable with no padding. I guess that is basically it. I just have an issue with sitting for long periods. Dilation (PT) is easy enough. I might even attempt moving up to the last one after my appointment next week. I figured, I would get checked out before taking on the green monster!

As always, if you are considering the surgery and have questions, please do reach out. Also note that each center has their own procedures to go through. I was surprised when they changed procedures just after I got the note to stop HRT and the doctor said that they changed that and needed to update, so no stopping HRT.

I am at the point where I am just living life now. There is no more gender dysphoria. I have my nephews wedding coming up which will be the first time many in my family will see me. I had sent out an email to everyone to advise them that I had the surgery and only one sister responded. Though my sister Judy has been with me through it all.

I hope that everyone has learned a little about this and raised awareness.

My heart to your heart, one heart, one spirit.

Emma

I am still working towards this look. Might take a bit as I still have a bit to go with the hair. Just giving an update for those who may be following due to them possibly following me down the surgery route.

So many times I have spoken about the pain one has to endure throughout this process. I continue with pain, but am managing with Tylenol. I took myself off of the Oxycodone. I have to admit, there are times when I wish I had more, but I have that one left and am not touching it. If I need to, I will just double up on Tylenol. That helps to lower the pain to the manageable level.

I was talking openly about the dilation. Cindy told me that I shouldn’t really be talking about that openly. I feel that it is appropriate here, as it is for educational purposes. She said when others are around, to please refer to it as PT. Dilation is a big part of this post-op In order to prevent the neo-vagina from closing up, you have to dilate three times a day. This will be tapered off as the months and years go on. I was so excited when I first dilated with the nurse and I “buried the dots”.

Notice that the second one is about twice as wide. Needless to say, I was lucky to have three dots showing when I first did it. Persistence and Tylenol and soon I started seeing just one dot. The dots denote the depth, and the nurse commented that I had extremely good depth.

Let me take a step back a bit. There are two types of vaginoplasty. There is the penile inversion as I had. Then there is the one where they just create a vulva, reposition the urethra and create a neo-labia. I believe with the second option there is no need for dilation, but given the uncertainty of my future, I wanted to keep options open.

I had my last check-up last week. The nurse said that I appeared to be doing extremely well. According to her, everything looks the way it should. I did note an issue with spray when peeing, but she said that may correct itself as the swelling continues to abate. I also note that as the swelling is abating, so does the pain. I am still uncomfortable, but it is at least tolerable. For those who are prepping to go through the same, be sure to get plenty of light days liners. You will need them. At 18 days past surgery, I am still uncomfortable, but managing. This is major surgery, so don’t expect a quick return to normalcy. The nurse told me it could be six weeks before I can start doing things. I will be returning to work on the 8th, but since I work from home and work in the cloud, it is mostly sitting, which I am doing anyway.

For those who are planning on going through this, be sure to sign up for FMLA (Family Medical Leave Act) and Short Term Disability, if your company provides it. This will help from loss of funds during your recovery. I am just waiting for the bills to start coming. I did manage to squirrel away some funds before starting, so as to minimize the impact, but I may need to come up with some more cash. I will take it as it comes.

I continue to recover and with each passing day, things get better. I may even attempt to go grocery shopping later this afternoon. My store still uses plastic sacks so not much goes in them.

In other news, we are on cria watch, as Jitty looks like she is getting ready to have her baby. We will put that announcement on our farm Facebook page.

My heart to your heart, one heart, one spirit.

P.S. If you are looking to have the procedure done, feel free to reach out to me. I went to Boston Medical with Dr. Slama and Dr. Oates. They were outstanding. Their whole team was superior.

Emma Morgaine Croft.

It was nice to go home for the weekend. Many question why they send you home over the weekend but have you come back the following Monday to have the catheter removed along with all the packing, but it was nice to be home after almost a week in hospital. Over the weekend, my in-laws and my eldest daughter and her husband with our granddaughter came to visit. We ordered out pizza, which after a week of hospital food, was especially good. The food at the hospital was passable, but I mostly like just the breakfast. On Sunday, my kids came to make us brunch, so that was especially nice. We had a great breakfast with French Toast, scrambled eggs and bacon and hash browns. I really love breakfast, so this was especially good. They all left in the early afternoon which gave Cindy and I some time to settle in afterwards.

Cindy had arranged for Kyle to come pick me up and take me to my appointment. He came right on time and I was almost ready but not. I never put on any earrings or my rings, I also forgot to take my Oxycodone before I left, so I was going without pain meds.

We got to the parking deck and got settled in. I managed to get across the streets and over to the Shapiro Center despite having to waddle with a Foley bag strapped to my leg and all the packing between my thighs. We headed up to the eight floor to Dr. Slama’s office. I went and checked in while Kyle set himself up with a view so he could nap while waiting.

In short order was led in by the nurse who I first met when under anesthesia so still can’t remember her name. She is English though, with a distinct accent, so we hit it off right away. She is a new addition to the team to assist Pam as there are more people coming through.  Yes, as more and more awareness comes, so do insurance companies that cover the procedure allowing more to get them. So hopefully, with this blog and others like it, that awareness is coming at an ever increasing rate so that there will be more acceptance and understanding.

I went in with the nurse and was soon on the table. I advised her that I had not taken anything for pain and did not have anything with me. She told me that I should be okay, but wished I had. She advised me of everything she was going to do. We took it step by step. The first thing she wanted to do was to check the responsiveness of my new clitoris. She took a cotton swab and put some alcohol on it and then rubbed it against my new clitoris. I felt it immediately and she was very happy about that. She took out the catheter to get that out of the way. She told me that it is held in place by a balloon filled with water. Once she attached a syringe and withdrew the water, the catheter could be removed with little discomfort. She told me not to worry about peeing as I won’t probably need to for six to eight hours as my bladder would need to fill. She snipped the sutures and slowly drew them out. There was a little discomfort, but not so much pain. Then she told me she was going to remove the packing. Just like a magician pulling scarves from their hat, she went to work. She was amazed at how much packing there was. She said that with that much packing there must be incredible depth. We soon found out. Once packing was clear and all the sutures that needed to be gone were gone, we moved on to the dilation lesson. She explained what I needed to do. We lubed up the smallest of the dilators which you start with. She said that we were going to insert it to see how many dots in we could go to check the depth I would have to do. She slowly inserted and kept going and going and going…. by the time she got to the point where I could feel she hit bottom, all the dots had disappeared. Once again, she remarked about my incredible depth. She continued with the instructions about cleaning, and ensuring I use the right amount of lube. I will have to do this for three times a day for a bit, and then you slowly start to taper off as time goes by. The purpose of this is to prevent your new vagina from closing up. They give you incredible instructions with all the details and timelines.

Dr. Slama and Dr. Oates came by and checked their work. They were both extremely happy with the results and were astounded with my progress. There was a black spot that they showed me in the mirror. They told me not to worry about it that it was just a blood clot that is easily peeled off. Dr. Slama took some tweezers and started to. It was like someone peeling off the skin from a sunburn. Ugh. It didn’t hurt. He said it would all come off as I showered. He also noted that some of the bruising was already getting lighter and was extremely happy with that. Some swelling was still there, but he said that too will pass. He took some pictures of my progress and commented about how well I was doing. I have to go back next Tuesday for another follow-up with Dr. Oates and then no more appointments until July.

I did my dilation last night and it went well. It was boring for the fifteen minutes you have to hold it in, but it went in easy and once again buried the dots. I had bought a douching system and tried to do that, but the douche came out of everywhere but the end of the nozzle, so I immediately ordered another system which will get here today so I can do it properly.

I know some of this will be a little too much information for the general audience, but I wanted this also to serve to educate not only the general public but help with the expectations of those who may be following my steps.

My heart to your heart, one heart, one spirit.

Emma

I went with Boudica again as I wanted to express the idea that you need a lot of strength and perseverance to get to this point. Add to that copious amounts of patience.

We stayed in Somerville for the night, so I could take the prep and be able to sleep later in the morning. Had we stayed at home, we might have had to leave by 4a to make our 6a check-in to the hospital. The trip from the hotel was mostly uneventful. I would talk about the prep but anyone who has had a colonoscopy knows this stuff to be pure evil in liquid form.

We arrived at the hospital at 6a and had a quick check-in. Soon I was taken into the pre-op area where they hooked up monitors, IVs and all sorts of stuff. Numerous Doctors, Nurses, and Students flowed through checking on me and introducing themselves. This is a teaching hospital, so there were numerous students. I loved that there were two, one Derrick and one Eric. Perfect! There were so many others but to get them all by name especially when you are nervous about beginning life changing surgery would be crazy.

The surgeons came by and checked on me. They joked around a bit and calmed me down. I was basically in the best place I could be for the surgery. I was just going with the flow. They got me wheeled into the OR and before I knew it I was waking up in the recovery room. They brought Cindy in to stay with me as I regained full consciousness. They were very on top of pain. I had a epidural, which helped any pain down below.

Soon Dr. Slama came by to tell me that the surgery went textbook. They had trouble finding a room afterwards, but before long I was wheeled up to the West Wing, 4th floor, room 4. I was taken aback as the view was amazing. I had a perfect view of the Prudential Tower from my room. I also had a private room as they had detected MRSA when they ran tests prior to surgery. I had been run through with antibiotics prior to ensure nothing would be left and on antibiotic IV while in my room. Protocols were taken to ensure I was clear. The day I arrived and the next day were set aside for bed rest, but by Thursday, I was to be up and at some point walking. I had a checkbox on my board in my room stating I had to walk four times. When they first got me up I struggled, the epidural had caused my right leg to be numb. They managed to help me to a chair and I continued to work to get it back working. They had removed the epidural earlier, but the affects were still there. They brought lunch and as I ate I continued to try to move my leg on my own. It soon started to respond. I managed to walk to the bathroom and back. I did manage to walk to the bathroom, so I took the challenge. Not only did I walk the four times, but I walked all the way down the hall and down the other hall as well. I didn’t stop at four and managed to get in seven of these walks. The nurse was astounded.

I did have a minor setback when I started to get bloated. The positioning on the bed had me pushing down on my butt. There was no way for me to expel anterior gas. When Dr. Slama came, he said he knew how to fix it and rolled me to my side and propped me up with pillows. After they all left, fortunately, I let go a steady stream of gas. The gas company would have been proud. Soon, my stomach was back to normal. They were extremely good at managing my pain. There was one time when the nurse couldn’t get there for a half hour and I suffered for a bit until she could get me my pain meds, but it wasn’t the usual case as they usually were telling me when they would give me the next.

The nursing staff were extraordinary. They really cared for you. I noted that there were some that I just connected with for some reason. One, especially, was Steph. We hit it right off and she was really caring and attentive. I really don’t like to call out names, because, should they read this, some may feel I missed them. Well, there were so many people taking care of me and with the drugs and all, sometimes it is hard to remember names. Leave it to say that they all were outstanding.

I just want to add a little note. The doctors are very good at advising you as to what you can expect. Yes, it will take a bit to get used to your new parts. Yes, you will have pain for a bit and expect some bleeding. They even send you home with some extra pads. You also have to deal with the catheter, though that is manageable. You do have to remember to drain it periodically. They also gave me a second, more portable bag, that can be strapped to your leg. It fits nicely under a long dress so that it is hidden. The larger unit hangs which is good for overnight. That is usually the one you had while you were in the hospital. These are easy to switch out and drain.

What they don’t tell you about is that they have to pin your arms back during the operation. This causes your muscles in your arms to be tight and sore late. I could barely move them at first but worked them out. The other is that with the epidural, you may lose some of the feeling in your legs or as I did in your fingers. I could not feel the thumb and first two fingers on my right hand. I had lost the feeling in my right leg. Which affected when they tried to get me to walk.

I really had no problem when my release time came and I just walked out under my own accord. Of course, I was wearing a short dress so the bag showed a bit, but I was able to walk out. Cindy picked me up outside and soon we were on our way home. She stopped on the way and got some Popeye’s for her son Kyle and I to have for lunch. I was soon set up on my donut with all my meds at home. I would return on Monday for the Follow-Up and have the catheter and packing removed. I will save that for the next.

As always, my heart to your heart, one heart, one spirit.

Emma

As of this writing, the time is accelerating. In 3 days, 17 hours, on Tuesday, June 11th, at 6 am, I will be going into the hospital for one of the most important life changing surgeries in my life. I have gone through all the preliminaries and now just waiting and waiting. Knowing I have a tendency to wig out over things,  Cindy suggested we get a hotel room in Boston for the night. This will allow me to settle in and do the whole bowel prep thing and take the antibiotics. We will be a half hour away from the surgical center. We were going to go to a closer hotel, but they wanted almost $300 a night!

The nurse had sent me a list of items that I should have on hand for my return. I have collected all but the stool softer and will get that this weekend. The surgery is expected to take five to six hours. I will stay in the hospital until Friday and then they will send me home for the weekend with the catheter, packing, and drains still in. I will spend the weekend at home and then back Monday to have everything removed and go over dilation. They will do a spinal prior to surgery and that will stay in for a few days.

Once I am home for good, it will be all about rest and recovery. I have a friend that will be with me during the day to assist. I will move to the spare bedroom as that bed is a bit lower and easier to get in and out of. There is also a TV in that room, though I want to focus on the stack of books I have. There is also a nice comfy chair next to the bed. Recovery is said to be about six weeks, though, I only have a month of Short Term Disability.

I know I will have to push myself through the pain. I am not one to stay on narcotics. I ween myself off of them as the pain becomes more tolerable.  We did cancel our Open House at the end of July to allow me more time to heal before I have to stand out there educating people on alpacas. Cindy’s knee is getting worse, so once I am healed, she might have to go in.

So that is the update. I am just biding my time until Tuesday.  I think this is the toughest time, the waiting.

See you on the other side!

My heart to your heart, one heart, one spirit..

Emma

So today, 5/27, marks the final two weeks. Fourteen days to go. I have already gotten my prescription for antibiotics and bowel cleansing. Cindy is going to get us a room in Boston so we will be close to the hospital. This is so we don’t have to get up so early to get there for the 6am start time.

I have been having trouble sleeping of late. I have too many things running through my mind at the moment. I really have to focus on my surgery at this time, but will also have to find a new place to live sometime around September.  I have no idea what my future holds, but just have to keep pressing on.

The nurse sent a list of things I should get to be ready. I immediately put in an order and got most of it. I think the most important will be the “donut” to sit on when we come home.

So, I will arrive on the Tuesday at 6am at the hospital. I will be prepped and spinal put in. I believe the surgery is around five hours. I will stay until Friday afternoon. I will be sent home with the catheter and packing. I will have to return on Monday to have that removed and go over the dilation procedures that I will have to follow. I just keep rereading everything to ensure I don’t miss anything.

To say that this will be a life-altering procedure is putting in lightly. Not only will I finally have the parts I should have had since birth, but my marriage will be ending towards the end of the year. We are to remain friends and even go out now and then, but we will no longer live in the same house. That is a major adjustment for me.

I was diagnosed with Asperger’s a few years ago. Very high functioning, but also very reactive to change. So with all that has gone on recently, It is disturbing. I have to push through though, and keep on keeping on. I have been thinking a lot of my old dog Brandy. She was a great dog and would often go for rides with me. We lost her to cancer.

Today, we stopped at the cemetery to visit Cindy’s Father, Sister, and Brother’s graves. It is hard to believe it has been seven years since his passing to that awful disease, Alzheimers. I broke down and cried. I loved her Dad. As I left, I had another cry over all the changes. I have gone through changes many times before and somehow always managed to come out better in the end. I am hoping this will be the same.

I have a lot to go through. It is funny how I am more concerned with taking that bowel cleanse stuff than the surgery. I will endure the pain. I will get through this major change, and then, focus on the future.

I am not sure where I will finally end up, but hoping it is a good place.

My heart to your heart, one heart, one spirit.

Emma

I haven’t been doing much updating it is more a waiting game at this point. I promised to share my journey to help people understand the long and tedious process. I also hope to inform those coming after me as to the myriad of hurdles and hoops you have to go through. In the end, we must possess copious amounts of patience.

As of today, 5 May 2019, I have 36 days to wait. It should have been 29, but I was told they had to push it off a week as the doctor wasn’t going to be available. Praying there will be no more delays. I am waiting to hear from them as to stopping my hormone regimen. We have to stop for around 30 days prior, though I have heard conflicting info. Some say you can continue your estradiol, but have to stop the spironolactane while others are saying you have to stop it all. I will just have to wait for the Doctor’s office to advise me.

A thing to consider is the time you will be out of work. I spoke to our HR/People Center and was advised that rather than use up all of my vacation for recovery, I should utilize short term disability and file under Family Medical Leave Act. You should do that about six weeks in advance as forms have to be filled out and the doctor’s office has to fill out one so ensure that you have time to get all of this done. I worked with the nurse to get the form done and she told me that since my job is mostly on the computer she will put me in for June 11th (surgery date) to July 8th. Recovery, I am told is usually around six weeks. I plan on taking the day before my surgery as vacation as I will have to take the colon cleanse stuff to get myself cleaned out. I am so not looking forward to that. I had to do that for my last colonoscopy and frankly it sucks. Not so much the having to go to the bathroom so much, but the flavor makes me end up going from both ends.

Another thing to consider is stockpiling lots of cash. Our deductible and copays are high so trying to ensure I have enough money in reserve so I am not deep in debt afterwards.

I will give more update when surgery gets closer and I get my final instructions. I was told that I will go into surgery on the Tuesday. I will stay until Friday and be sent home for the weekend with the catheter and packing still in place. I will return either Monday or Tuesday to have the nurse remove the catheter and packing and give me a set of dilators with instructions on use. The dilators are needed to keep the passage open and as you heal, the frequency of dilations required will go down.

I am already stockpiling ice packs, and have to get a donut like you use for hemorrhoids. Probably need to get lots of pads too. It can get messy.

It is going to be a long recovery, so I have also stocked up on books to read. The nice part is that hopefully, it will be warm and sunny. This dreary, cold rain is really depressing.

I am hoping that my surgery prep electrolysis appointment is my last. I like Linda, but not the pain. I will check back in as we get closer.

My heart to your heart, one heart, one spirit!
Emma