When Is Transition Over?

We read articles, blog posts and see videos where people talk about being fully transitioned or “post op”.  This gets me thinking.  What is it they mean by fully transitioned or post op?  It feels like people use those two terms interchangeably.    People talk about how things will be when they are done transitioning.  I hear folks talk about “once I’ve transitioned”.  What does all this mean?  How do they know they’re done transitioning?  Do we get a certificate that states that our transition is complete and there’s nothing left to do?  Who gets to decide this?  Doctors?  Society?  The government?  Ourselves?  People ask us if we’ve had “the operation” like that’s some kind of testament to whether we’re fully transitioned and, like-wise, when we talk about being post-op, we buy into that whole notion that it takes an operation to fully transition.

Transitions are as unique as finger prints.  No one walks exactly the same path or has the same experiences.  Not everyone has the same end point in mind when they begin to transition.  What one person might consider a complete transition another might consider only partial.  Many blog posts have been written about people who do not buy into the gender binary and what their transitions look like.  There is wide variety in what any of us, whether binary or not, consider that point where we’re done transitioning.  I’ve heard trans people who started transitioning 20 years ago state that they don’t feel done or that they don’t completely relate to the opposite gender as they were assigned at birth.  Some are adamant that they are no different than someone who was born and raised as their transitioned gender.

Personally, I don’t even like the word transition.  To me it is misleading.  It means that we’re going from one thing to another.  We’re not doing that, though.  We already are this thing that we’re supposedly transitioning towards.  It’s true that our bodies change and how society sees us and treats us changes, but who we are stays the same.  Because of the brainwashing that we received from birth it might take us quite a long time to realize who and what we really are but it doesn’t mean that we weren’t that person all along.  Sure, hormones can do some wonky things to our heads, especially at first, and make it seem like our personalities have changed, but what’s really happening is that our true self is coming out and we’re being allowed to let our personalities be free for the first time since we were little children.  I prefer the word align.  I feel like I’ve gone through an alignment internally and externally as a person.  My internal and external are in alignment.

The general population of cis-gender people see people like Kaitlyn Jenner in the news and they assume that we all go from being a hyper masculine dude to a hyper feminine woman (or vice versa) in the blink of an eye and that then we’re done transitioning.  This is a fairytale.  Even Jenner, with all of her money, will still continue to transition throughout the rest of her life.  Transition is so much more than just surgeries and hormones.  Those are the most talked about components, inside and outside of the trans community, but they are just the gas that makes the engine run and not even completely necessary for some people to transition.  The nuts and bolts of the transition engine is internal/emotional and social.  Why do we get surgeries and take hormones?  So we feel better in our bodies and to align our internal and external personas to both ourselves and the world.  They change the way we look and therefore how other people see us.  They change the way we see ourselves.  For me, personally, I wanted to experience having the body I felt I was supposed to have as well as be seen by the rest of the world as the person I have always known myself to be.  I could say that once those two goals were met that I was done transitioning.  But that’s not even close to true.  Even though strangers might see a man when they meet me, people that knew me before as a female often still see a female and want to treat me that way.  They are uncomfortable referring to me as he and him and using my correct name.  They say things like, “you’ll always be my old relationship (brother/sister/mother/father/etc) and old name to me.”   I won’t even go into how selfish and cruel this is to say to someone.  Let’s just suffice it to say that the social side of transition is often the hardest and most complicated portion of the journey.  And then, there’s our own emotional, internal world that battles over whether we’re really men or women after all and whether we’re “trans enough” and whether we’re performing our new gender correctly and worries about whether someone is going to be able to figure out that we weren’t born into the gender as we present and kick our ass or worse.  There are people who will crop up out of nowhere for the rest of our lives that didn’t know we transitioned or that we are forced to “out” ourselves to for a myriad of reasons (think doctors, lawyers, judges, employers, etc.)  We can never escape our past.

So, to me, transition never ends.  The human body is constantly transitioning, whether we want it to or not.  As we sit here reading this post our bodies are all in the process of transforming into something new.  Our viewpoints are changing constantly.  Our brain is always in the process of change and adaptation, learning new things, forgetting old things, building new pathways.  Society might see a man or a woman, but our mother will always see that baby girl or boy that they gave birth to and will struggle to honor our truth throughout the rest of her life.  Old employers, even if they got the memo that you changed your name and gender marker, will still mess up your information occasionally.  This is just life as a trans person.  Or life as a person.  How many of us are the same person at 40 that we were at 10, 15 or 20?  Hopefully none of us.  We’re all transitioning, some more dramatically than others, but we’re all doing it everyday, all day long.

As I sit here writing this post I ask myself this question.  When will I be done transitioning?  Technically, I am done.  Society sees me as a man.  I see a man in the mirror.  I’m happy with my surgery results.  I don’t plan on any more surgeries at the moment, but I’m open to the option in the future.  I like the facial and chest hair that hormones have given me, but I want more of it and I know that, with time, it will come.  My body is not done changing and it never will be until long after I’ve physically passed on.  Even after death our bodies continue to change.  We’re never static.  Nothing ever stays the same.  So, I can happily put on the clothes I feel best wearing every day and step out into the world as a man today, but I know that the transition process will continue throughout the rest of my life.  The only difference is that now I can live a more honest and open life and there isn’t anything besides maintaining my hormone levels left to do.  If this is what someone means by being fully transitioned than I guess I am at that point but I know that things will continue to change as I go throughout the rest of my life and there is more work to do.  And I’m ok with that.  I am in alignment, and that’s what matters.

The Deeper Side of Transition

When I started to transition from a butch lesbian to something on the male side of the spectrum I knew I needed to take things slowly.  I needed time to wrap my mind around exactly what I was doing and where I wanted to go with hormones, surgeries, name changes and the like.  I knew I needed time to wrap my mind around the idea of not being a lesbian anymore.  Of not being a sister and a daughter anymore.  Of being seen as male.  A white, heterosexual male.  I knew that the social side of transitioning was going to be the hardest part for me to navigate.  I wasn’t really sure I could handle it, or if my relationships could handle it.  In general, it’s been easier than I ever imagined.  But it’s also been tougher than I ever imagined too.  The person who’s given me the hardest time about everything is myself.  I get in my own way.  I’m not comfortable talking about my personal life to even my dearest friends.  I still feel like I’m walking around naked a lot of the time and everyone can see all of my flaws, scars and short-comings.  I still struggle with coming out to people, especially face-to-face, or even telling someone I changed my name.

I’ve been fortunate though.  The hormones have changed my looks gradually, lowered my voice to a definite male timbre, and top surgery seemed to seal the deal of helping me look like the man I’ve always felt like inside.  Before top surgery, I probably was perceived as male about 70% of the time and could still use a women’s washroom without too much fear.  I had started to work towards using the men’s but still didn’t feel like I could go in there safely 100% of the time.  Post top surgery, something magical happened and I was suddenly thrust over into the male side of the spectrum and it became clear to me very quickly that I was now seen primarily (98%) as male to the general public.  Generally, I’m happy with this turn of events, but it happened so suddenly that I wasn’t quite prepared for all of the repercussions this would foist on me and my family.  Now I am Candace’s husband, even though we’re not married, and I am my brother’s brother, and Candace’s mom’s son-in-law.  I don’t know if I could manage to pull off a non-binary transition now if I wanted to.  Luckily, I don’t want that but it’s still a little uncomfortable and strange for people to refer to me as someone’s brother or husband.  There’s a part of me that feels like I should be ok with this and it should feel natural.  Sometimes it does feel natural, but mostly it feels strange.  I’ve gotten totally comfortable with being referred to as sir and he/him by strangers but the titles still throw me.  I think it’s just a matter of getting used to it and will take time.  My brother also has to get used to this, and thankfully, has been very gracious about it so far.  He stumbles sometimes, but so do I.  I still avoid telling people I’m his brother by saying that he is MY brother and leaving my gender up to them to decide.

Basically, though, I’m really enjoying being a guy in public.  I went shopping at a jewelry store yesterday and it was really cool that everyone assumed I was shopping for my wife.  When I made my purchase, another man and I had a fun interchange about being good husbands.  Living the role of man, husband and brother in the real world is feeling like it fits much better than woman, wife, and sister ever did.  I feel freer in a lot of ways.  Socially, with the exception of a few people, I’m out to everyone.  It’s still awkward at times and we all have some adjustments to make, but I would consider this transition a success at this point.

Transitioning is funny though because we can’t always count on how the hormones or a surgery will effect how we’re perceived.  Just like a teenager, we can have a sudden growth spurt or physical change.  You could wake up one day and realize that you’re losing your hair at a much faster pace than expected.  Or your beard could suddenly sprout like a lumber jack.  If we’re not prepared socially for these changes it can really play havoc with our progress and mental space.  Whenever we inject a hormone we have to be prepared for whatever side effect it gives us and often, we think we are prepared until it does something unexpected.  In this case, the physical transition moves faster than our mental and social transition and causes a lot of problems.  Sometimes it’s more than we can handle at the moment and we have to make the heart breaking decision to stop our transition, temporarily or permanently.  I can’t say that I started hormones willing to take all of the possible side effects no matter what.  As time has progressed though, I’ve become willing to take them all no matter what.  I don’t relish the idea of becoming a bald guy, but I accept that it could happen.  I’ve seen my hairline recede quite a bit in the past couple of years and I know that my hair is thinner than it used to be up top.  Baldness is creeping up on me and I know it.  I don’t expect to go completely bald, but I do expect to lose quite a bit of hair.

Another, deeper, side to transitioning is erasure of our pasts.  Now that I look male, people make a lot of assumptions about my past that just aren’t true.  I did not have all of the opportunities handed to me that I would have if I’d been born with male genitalia.  I was not raised as a boy.  I never was a Boy Scout.  I never played Little League or any male sport growing up.  I grew up queer, a Tom Boy, a lesbian and I had to fight and prove myself every inch of the way to get where I am today.  I played girl’s softball and was a Girl Scout growing up.  All of that is forgotten now and definitely does not seem to fit with my current persona.  This can be very disturbing and upsetting if we’re not prepared for it.  Personally, I don’t care that much and I never really liked being a “female role model” anyway, so it’s sort of a relief.  I know my history and that’s what matters to me.  No one ever handed me anything and I’ve had to work my butt off to get what I have and I don’t care who knows that about me.  Others, though, could find this to be very upsetting and it’s something to keep in mind.

Balancing the emotional and physical sides of the transition process is tricky and not for the faint of heart.  There are a lot of days where I still wonder if I can handle all of this and even whether I want to.  There are days when I wonder if I made the right decisions along the way.  But then I think about the option of going back to living as a butch lesbian and I know that I could never do that again.  So, it’s onward I go as there is no turning back for me at this point in time.  What the future brings is anybody’s guess, but I know I will handle it to the best of my ability.

An Epic Journey

I have a little sun room in my house where I like to sit in the morning, sipping coffee while reading or writing on my laptop.  I remember sitting there five years ago feeling desperate, alone, misunderstood, unloved, depressed, tears streaming down my face as I struggled to decide whether to start moving towards transition or not.  My relationship was near ruin and on the brink of breaking apart.  We had just built a beautiful new home that I dearly loved and all I could see was that if I moved forward towards living as male I would lose everything I had built over the past 15 years, including my partner and my pets.  My business was struggling too because I had been ignoring it for the past couple of years due to a vast depressive period I had gone through.  My life was falling apart.  I had escaped into an alternate reality to escape my life and now it was all coming to a head and there was no avoiding reality any longer.

I had to do something.

But I felt boxed in.  Every direction I looked all I saw was loss. All of my options were lose-lose.  Where was the win in any of this?  I couldn’t see any.  My partner had made it plainly clear that if I transitioned than we were done.  And if I transitioned I’d be alone, poor, probably living on a cot in my shop and eating instant mac and cheese if I could even afford that.  And how would I even attempt to transition without any money or health insurance?  This was my rock bottom and it was pretty awful.

I look back at that time now and I’m overwhelmed by how far I’ve come.  How far my family and friends have come.  How far my relationship and my business have come.  I still have my partner, my pets, my home and my business.  All are thriving.  And me?  I’m living as a man.  Sure, my partner still calls me she, but we’re working on that.  Or we will be soon.

How did I get here?  Well, my partner and I separated for a few months and slowly started “dating” each other again.  I started seeing a gender therapist who sent me to an endocrinologist for hormones who also checked other things and found that my thyroid levels were very low.  So I started taking thyroid pills two weeks before I started taking a low dose of T (androgel).  Remarkably, the thyroid pills made me feel better immediately.  My mood lifted significantly from that alone.  And then I added the T in and my outlook on life shifted 180 degrees.  In my darkest hours, alone, separated from my family, I knew without a shadow of a doubt that this was all going to work out somehow.  I had no idea how, but I was 100% convinced that it would.

And the rest, as they say, is history.  My partner and I slowly rebuilt trust and our life together again.  I came out to some close friends.  I changed my name.  I had a hysterectomy and top surgery.  I went from a low dose to a full dose of T (about 2 years ago).  And now, I get called sir at drive-thrus and can walk into the men’s room without anyone batting an eye.  It’s amazing!

But before I got to this point I had to go through what, for me, was the second hardest part of transitioning (first being the initial decision to begin).  And that was being in the muddy middle ground between male and female and nobody, including myself, knowing whether I was a girl or a boy.  I struggled hard with my identity at this point.  I didn’t know who I was anymore.  Every day I could feel my old, female self slipping further and further away and this new, more masculine, awkward person emerging.  I wanted to go hide in a cave until it was over.  It was hard to leave my house and go to work, see people, interact with people I have known a long time.  I felt so naked and self conscious.  Vulnerable.  Raw.  Exposed.  My mask was slipping off and I couldn’t hide it anymore.  My deeper voice and receding hairline were giving it away no matter what clothes I wore.  There was no closet big enough for me to hide in.  I couldn’t just stay home all of the time.  This was not an option.

So, with the knowledge that the only way out was through I made a bold decision to just come out about it to as many people as I could as quickly as possible and stop hiding who Shawn is.  I brought Shawn out into the light of day as boldly as I dared, despite my pounding heart and sweaty, shaking hands.  I stood up naked for all to see and it was terrifying at first.  But no one freaked out (well, maybe one person, but she’s better now) and the sky did not fall in on me.  I still have my partner and home and business and pets.  And now I have more friends that I’ve made through blogging and my connections in the trans community.  I have more support than ever and my relationships are genuine and honest, completely honest, for the first time in my life.  No hiding who I really am anymore.  I’m strong enough now to honestly say to myself that if they don’t really like me enough to accept this about me than I don’t need them in my life.  That, my friends, is a HUGE triumph!  I’m so proud of myself for getting to this point that I feel like I could burst.

Last weekend, Candace’s mom had a commitment ceremony with her boyfriend at the annual family reunion.  She asked me to stand up with Candace and her other daughter’s family with her at the ceremony.  She asked me if I wanted to wear what the other men were going to wear.  Yes!  I was nervous.  I’ve never been in a wedding type ceremony before and the whole family was there to watch and SEE who I am now.  Candace reminded me that no one was going to pay attention to me since this wasn’t about me.  Yeah, right!  They noticed me.  Anyway, I did it and a lot of people told me how great I look and no one made any negative comments to me or Candace.  Were they talking about me in private?  I have NO doubt that they were.  And I’m ok with that.

Changing people’s perceptions of us takes a lot of time, effort and patience.  This is a big ship to turn and it doesn’t happen overnight.  Little by little, slowly, gradually, people  start to acknowledge and appreciate who we have always known ourselves to be.  The first step is always in accepting that yourself.  Bringing that which has been hidden out into the light is both liberating and terrifying.  But, just like with anything new and raw, with enough time, light and air, it starts to feel normal and healthy.  Some of us are braver than others.  I am by far not the bravest person in the world.  Most of the time I’m wrought with anxiety, indecision and self doubt.  Most of this process has been extremely slow and gradual.  Excruciatingly slow and gradual.  But that’s the way I had to do it for my own comfort.  Every so often I put a little bit more of myself out there for the world to see and once I’m comfortable with that I add something else.  Some things are bigger than others, like changing my name.  But some things are as small as wearing a button down shirt instead of a polo to work one day.  Or wearing a binder, or a packer.  Will anyone notice?  Will anyone say anything?  It’s all about testing the waters and finding what’s right for me.  And the process continues.  I’ve been growing out my chin and mustache hair for the past month.  I’m sure people have noticed but no one’s said anything to me.  I’m just laying this on top of all the other coming out layers I’ve already set down in place.  This is anything but methodical, but in a way it is.  It’s about testing the waters and gaining confidence.  Do a little thing and observe.  Do another little thing and observe.  Nothing bad happened so lets do another little thing.  Layer upon layer upon layer upon layer.  Thin, delicious slices like a Smith Island cake*.

smith island cake

Classic Smith Island Cake

Eventually you get something that looks like your true self.  Which is continually evolving and changing anyway, so there’s always new layers being added onto the base of what you previously built.  Cake upon cake.

stacks of cakes

Transition, for me, has been more like a death and a rebirth than a transition.  Dawn was already dying when this all began five years ago.  Shawn emerged from the fire of burning down what was left of her.  I’m a better and much improved version of myself now.  Everyone who knows me can see this.  It’s not only about how I look but how much more open and authentic I am now.  I’m still learning to let my guard down, but I’m a lot less guarded and shielded than I’ve ever been before.  My walls had to come down in order to traverse this path.  I’m more at peace with myself and with life now.   I’m less angry.  I’m more patient.  My anxiety and depression is better.  Life is all about evolving and learning as far as I’m concerned.  Staying stuck and stagnant is certain death for me and that’s where I was five years ago.  I’m so thankful that I woke up when I did and had the courage to move forward into a new, uncertain future in spite of all that I seemingly had to lose to get here.  The journey has been incredible and in some ways, it’s just beginning.

 

*Note:  If you’re curious about the Smith Island cake or Smith Island itself, here are a few links of interest:

http://msa.maryland.gov/msa/mdmanual/01glance/symbols/html/dessert.html

https://smithislandcake.com/

https://en.wikipedia.org/wiki/Smith_Island,_Maryland

Testosterone: Panacea or Pandora?

Just in the last couple of days three bloggers I follow posted about how hormone therapy was causing them problems mentally.  First there was butchcountry67’s post here, then Sam’s thoughtful post here and then Eli’s post here.  Their experiences really made me think hard about how I’ve been feeling lately.  I know a few of you are thinking about starting T and no one really talks a lot about the mental aspect of transitioning or what the hormones do to our brains. I’ve even written a little bit about how I wonder if T is making my mind do interesting and sometimes alarming somersaults.  There was this post that I wrote recently as well as this one where I talk about my mental acrobatics of late.  My anxiety has been off the charts since November/December of 2015.  Like I’m often apt to do, I have tried to figure out what is causing this sudden and unexpected surge of anxiety in my life.  I’ve blamed it on the holidays, on surgeries, menopause, aging, stress, work, transitioning, hormones, diabetes, my weight, my diet, my lifestyle, lack of sleep, society, early dementia, you name it, I’ve thought of it.  Maybe all of that plays into our mental state.  Maybe one thing alone doesn’t make that much difference but all added up it creates a nice mind noodle soup that sends us into another realm.  I don’t know.

I try to remember when I started T exactly but I’m just not that sure.  I think it was around 2011, so about 4-5 years.  I started on a super low dose of Androgel.  My first prescription was a baggie with 4 or 5 little packets in it.  I put 1/4 packet on my upper arms every morning.  I did this for a while and then went to 1/2 a packet.  Eventually I was given a bottle of the stuff and applied two pumps per day.  I was on the gel for a couple of years I think.  Physically, I did see some minor changes.  My body odor changed pretty immediately.  There was some minor growth downstairs and a marked increase in libido.  My facial hair got much more fuzzy and pronounced and I started getting hair in new places like my butt and upper thighs and my voice dropped a little bit.  Mentally, I felt really good.  My moods leveled out and I felt unusually optimistic during a pretty rocky time in my life.

But I didn’t like having to put the gel on every day.  It’s messy and can rub off on pets and partners (so they say, though I’m not so sure about that once it’s dried).  The little changes I had experienced made me hungry for more so I asked my doctor about switching to injections.  I had intended to stay at the same dose or slightly higher than what I had been on with the gel.  But he wrote my script for a full dose (which I didn’t know at the time).  I did some research to try and figure out what a full dose typically is and realized he had plopped me up to full dose in one fell swoop.  I called and talked to him about it and he told me to take a little less if I wasn’t comfortable with it.  He made it sound like I was already to a full dose on the gel.  Maybe I was.  I don’t know about that since no one really talks about what a full dose of Androgel is.  I think I was up to 3 or 4 pumps per day a the end.  Not being either a doctor or a math whiz I’m not sure what the equivalents are.  So I injected .4cc or 80mg per week of T for about a year.  I saw a dramatic drop in my voice right away and some real facial hair sprouting as well as some chest and arm hairs and a serious increase in libido that was beyond overwhelming at times.  I didn’t dislike the changes.  He had given me carte blanche to toy with my dosage if I wanted to so I upped it to .5cc (100mg) per week for a while (maybe close to a year).  I had a hysterectomy and a vein surgery in the mean time.  People started increasingly seeing me as male out in public.  Using the women’s toilets started to become a problem.  Not being out as trans to friends started to become a problem.  People started wondering what the heck was going on with me.  Some people still do since I haven’t told everyone yet.  Still, mentally, I felt pretty good.

Looking back, however, I can tell you that a new pattern with my anxiety disorder was emerging.  I would go quite a while and everything would be ok but then suddenly, out of nowhere, there would be a huge surge of anxiety/panic attacks over some particular thing that would be debilitating for a while.  First it was bridges, then it was bathrooms, now it’s my mind/memory.  Is this the work of the T or is it just how my disorder is progressing?  I don’t know.  I had the two Transient Global Amnesia attacks.  The first one was before starting T, the second one was after being on it for a couple of years.  So, I can’t say that the T caused those.

What I can say, however, is that, while who I am has not changed, the way my brain thinks and processes information most definitely has.  I have disturbing thoughts throughout the day that scare me and make me wonder who I am becoming.  Sometimes these thoughts get a grip on me and don’t want to let go.  It upsets me greatly and freaks me out.  These thoughts are usually sexual or violent in nature.  I remember getting my eyes examined by a new doctor one time.  She was an attractive young woman (in my opinion anyway) and she had really muscular, well defined arms and was wearing a sleeveless dress that day.  I got fixated on her arms and wanted to comment on how beautiful they were.  I literally almost came unglued because this desire was so strong in my head and I knew it was inappropriate to mention something like that to her.  I had to will myself to stay quiet.  Then the other day I was driving along a back road and I saw an attractive lady (again, my opinion) wearing a very flattering outfit jogging on the opposite side as me.  I had a sudden urge to slow down, lower my window and tell her how nice she looked and how that outfit really showed off her figure.  What?  Who does that?  NO!!  Only perverted idiot men do that kind of shit!  I thought, oh my God, I’m turning into a sexist asshole pig.  Of course I didn’t scare the crap out of that woman thank God but I had the urge thought and that freaked me out.  This is NOT who I am.  These are two examples.  I have random thoughts like these throughout the day.  Every day.  Sometimes I get sudden bursts of anger that are hard to control, usually while driving.  Even the slightest little infraction from a fellow driver will send me into a fit of anger.  Again, this is not me.

Perhaps I’ve found that point where I’m beyond enough into the too much territory.  I reduced my dose back to .4cc for the past couple of weeks and my brain has settled down some.  I considering going even lower to maybe .3cc and see how I feel.  But after reading butchcountry67’s post I feel like I should ask my doctor before doing that.  Knowing him he’ll tell me to do whatever I want.  He doesn’t seem at all concerned about it when I talk to him at my bi-annual visits.  Maybe that should alarm me.  He’s more concerned with my diabetes.  He is an endocrinologist after all.  That’s what he specializes in.  The hormones are just a side gig for him.  But for me, they are a big deal and they impact my life just as much as being diabetic does.  To be totally honest, I’ve even been considering stopping my T altogether lately.  I doubt I will do that, but it is floating around my mind noodle at the moment.

I’m talking about this because it’s important for folks to hear the truth about hormones.  They are powerful and can mess you up if you’re not careful…and sometimes even if you are.  Throw in some mental disorders like depression, anxiety, bi-polar, etc. and you can have some really unpredictable outcomes.  I’m not saying don’t try HRT for yourself.  Not at all.  Just be aware  that they are serious and you need to closely monitor yourself mentally as well as physically while on them.  I don’t know if T is to blame for all of my recent issues.  My guess is that it isn’t.  But since lowering my dose just a little (20mg) has made a difference in how I feel, I’m pretty sure that some of it is from the T.  Doctors want to just throw a standard dose at everyone like we’re all the same and not think about it too much.  They suffer from the same issues the rest of us suffer with, namely, too much to do and not enough time to do it.  They don’t want to take the time to be thorough because they have a waiting room full of impatient people waiting to be seen.  It’s up to us, the patient, to advocate for ourselves and ask the questions and demand the answers.  Sometimes, the doctors truly don’t know the answers because there just isn’t enough information out there through research and studies.  This needs to change.