Recently, I went to an appointment with one of my specialists (not endo related). After sitting down and saying hello, he tried to refresh his memory about my case. "Oh yeah, you're the one with Endometriosis. Oh man, didn't you have a severe case? Yes...oh wow, now I remember, you have EXTENSIVE disease." Then I reminded him of my other issues, and got the typical shocked reaction. 

Being a patient with multiple, complex diseases and a lengthy medical history, I'm not surprised when doctors become overwhelmed with my information. This is something I've grown accustomed to. I know I'm "weird," as I would put it, complex. I continued to go over my diagnoses of adenomyosis, renal tubular acidosis, and medullary sponge kidney. As we were reviewing my long list of medications and supplements, my doctor stopped me, asking why I was taking a few of them. "They were recommended by my fertility doctor," I explained (so he didn't think I just ran to the vitamin store and threw a bunch of stuff in my basket). Then, he said something that nearly knocked me off my chair. 


"Should you be trying to get pregnant? I mean, even if you do get pregnant, what would that be like??"


Whoa. Harsh.


I tried to recover, and gracefully replied, "Um...probably difficult, but my husband and I still aren't finished trying for a biological child, although we have started looking into adoption." 


The rest of the appointment went fine. I got some good news and some not so great news, and left with a plan moving forward. Yet, as I climbed into my car, raining pouring down outside, I couldn't shake the feeling those words left on my skin. That feeling of disquiet, of judgement, of somehow doing something I shouldn't. 

There are an awful lot of "shoulds" being thrown around in the medical field, especially when it comes to treatment of endometriosis and pregnancy. At age 18, I was told that because of an SI injury, I would likely require bedrest for any pregnancy I might have. Since age 22, I've been told I "should" get pregnant, as soon as possible, that it would cure my disease by resetting my hormones (which, by the way, is an absolute myth, and a cruel one at that; it is often difficult to become pregnant with endometriosis with the inflammation and anatomical distortion that come along with it, let alone the hormonal imbalances and ovarian dysfunction that can result from traditional hormone treatments). 


My husband and I let the "should" of conceiving turn our lives upside down when a doctor told us two years ago that we should get pregnant immediately if we ever wanted it to happen. Over the years, I've been told I should go to this doctor or that doctor, I should trust my doctors implicitly, I should try natural remedies, I should meditate, I should work less and eliminate stress on my body, I should relax and let things happen the way they should, I should worry less, I should have fun with trying to conceive, I should take the aggressive approach and do IVF because I have stage IV and I obviously could never get pregnant on my own, I should have sex every other day no matter how much it hurts, I should only have sex within a short window determined by peeing on a stick, I should not worry about when I have sex because then there's too much pressure, I should let a doctor push and pull my hormones based on his or her typical protocol despite my personal (negative) history with ovarian stimulation, I should exercise more, I should exercise less, I should stop thinking about it so much, I should think about it MORE, I should, I should, I should!

 And then there's the phrase I absolutely hate the most:

"You shouldn't try to get pregnant. You'll pass your bad genes onto your children. How selfish."

I'm not joking. People have said this to me. More than once. 

I could go on and on about why this statement is misguided (and extremely insensitive). But what it really boils down to is it is none of your damn business whether or not I procreate. I have an incurable disease, yes. I also have severe allergies, and a terrible sleep pattern, and a horrible addiction to chocolate, but I will love my child more than you can ever possibly fathom, and would do everything in my power to make sure that if my child displayed symptoms of any of my diseases, I would get them to the BEST possible care available, and pass on all of the knowledge I have so they can live a better life than I did. 

The kicker in this situation, however, is that it wasn't said to me by someone who didn't understand what they were talking about. This was a doctor that I go to for medical care, a doctor that I happen to like and trust. To be questioned about whether or not I should continue to try for a biological child, as if he was asking me whether or not I should continue to eat red meat, was not only inappropriate but completely unprofessional. Whether I should or should not try to have a child is completely up to me, my husband, and my fertility specialist. 

As it would happen, I had considered a hysterectomy earlier this year to eliminate pain from adenomyosis (a hysterectomy won't help endometriosis, but it can relieve pain associated with adeno). I was questioning whether or not I had hit the end of the road, whether my body had had enough, and I asked my surgeon to tell me what to do. He said something that just reaffirms that he has my best interests, both physically and mentally, at heart. 

He told me that if I had any doubt in my mind, I should not take away my chance at having a biological child. Even though he knew the extent of my disease and the toll it had taken, he continued to support our desire for a biological child, and would not even think of putting his opinion into the equation (despite my great desire to be told what it was!). 

I wish I had explained to the doctor who questioned my decision about the fact that I'm nearing the end of my journey trying to conceive. Yes, my body has been through a LOT (five surgeries in two years, two of which were emergency surgeries in the last 6 months). Carrying a child to term with my adenomyosis and back issues would be difficult, but I knew that going into this. I never thought it would be as difficult as it has been, but I also never thought it would be easy. Being a mother never is. 

When my husband and I discussed trying again after our first miscarriage, my NaPro (fertility) doctor asked me how I felt about it. I said I was kind of nervous, and very anxious about what problems we might face, especially knowing that after one miscarriage, the chance of another goes up significantly. He said something that almost made me cry. He explained that I was making a sacrifice by being willing to carry my child. I was not only sacrificing my body, but also opening myself up to the emotions of what might be. To continue trying would mean opening myself up to heartbreak, along with the medical complications, but that I was willing to do so because I wanted to be a mother, and I wanted my baby. And that was the least selfish thing I could possibly do. 

So, should I keep trying to get pregnant? That's a really great question, and it's one that takes a lot of consideration and deep reflection to answer. This month, I have begun what I believe is the last leg of my journey. I have taking a drug that will hopefully help us conceive. It is often prescribed to women struggling to get pregnant before moving on to more aggressive approaches, like IUI or IVF. If it doesn't help us, I'm pretty sure I will be finished trying. Despite what some might think, I do know my limits, and I believe this is as much as my body can handle. 

I don't know what the future holds for me and my husband, but I do know that we made the decision based on what we feel in our hearts, not what someone said we should do. 

So the next time you have a conversation with someone about fertility, no matter what your opinion is on the matter, just be supportive. It doesn't matter whether you believe they should or should not do something when it comes to having a child. If you find yourself about to mention what you would do in their shoes, don't. Trust me. That's one should that you should just keep to yourself. ;) 

Anyone who knows me knows that my husband and I are big Disney nuts. I was speaking with someone a few weeks ago about why we enjoy Disney so much. I know that they're widely recognized as a gender biased, money making corporation, but when I really think about it, I realize it has quite a lot to do with having Endometriosis. Living with a chronic illness can be a never-ending stream of disappointments and reminders of our bodies' limitations. Over time, this really takes a toll on our self-esteem and general moral. 

There's something about Disney, though, that makes all of this just a little bit easier to deal with. For many of us, Disney movies played a huge role in our childhood. Disney was often the source of our favorite movies, the songs we loved to sing, and the characters we emulated, for better or worse. Disney, with all its flaws, offers us the chance at escapism. When it first premiered in 1937, people loved Snow White because it offered them an escape from the dreary drudgery of reality, 83 minutes of bright colors, cheerful music, and slapstick comedy. 

That escapism, I believe, is what drives my love for Disney. When I'm having a horrible pain day, all I want to do is burrow under the covers where no one can hear me scream, hold my heating pad tight, and have a Disney movie marathon. When I miscarried last year, I regularly belted "Let It Go" at the top of my lungs while driving home from work. I'm sure the other motorists who may have taken a quick glance my way thought I was some kind of weirdo, but it was honestly the cathartic release I really needed.

My husband and I go to Disney World once a year, even if it's just a short weekend trip, because at our Home Away from Home, we can forget our troubles and just be kids again. While some people might think that stage performances, parades, and fireworks extravaganzas centered around the belief that "Dreams come true!" might be too sugary sweet and out of touch with reality, that's exactly why we love it! Day in and day out, my dreams do NOT come true. Living with chronic pain is debilitating and downright soul crushing. It feels like bad news is always just around the corner. I've come to expect the worst because, for me, it usually happens! 

That's a pretty bleak outlook on life. It's the reason so many people who live with chronic pain have debilitating depression. And it's no way to live. 

For us, visiting Disney World is a place to regroup and chase our cares away. It's where "Have a magical day!" is the standard way of saying goodbye. It may not seem like much, but it makes a big difference to focus on the magic, as orchestrated and scripted as it might be. It's a place that reminds us what it felt like to be five years old, where the only things we had to worry about was how to weasel our way to a second piece of cake, and which Lisa Frank coloring book to use next. It's a little taste of that euphoric sense of hope that only comes from believing in Santa Claus and just knowing, deep down in your bones, that everything is going to be ok. 

So go ahead, laugh a little bit the next time you hear I'm planning my next Disney trip, or when you find out just how many times I've watched Frozen (it's probably into the triple digits by now). I'll send you a post card. ;)

My husband called me this evening to ask if I wanted any snacks at the grocery store. Why yes...I did. But, I told him, it needs to be low fat (still adjusting to not having a gallbladder) and gluten free. Well, ladies and gentlemen, he hit it out of the park! He remembered my secret ingredient for lowering the fat content in cakes, and came home with gluten free cookie mix and a glorious can of pure pumpkin! (Did I mention I'm a stereotypical almost-30-something who totally buys into adding pumpkin to EVERYTHING? Well, I am. Don't judge me.) 

He called me into the kitchen and within 20 minutes, I was enjoying this sinfully delicious, yet slightly less guilt-ridden, dessert! For added fun, we used two ice cream scoop sizes to create the Mickey shape. Because we're cool like that.

Here's the recipe! The best part is not only that it's gluten free, but there is also no oil, butter, or eggs! No, the pictured ingredients are not organic, but I'm sure you can find suitable organic options that will taste just as good!

Gluten Free Pumpkin Spice Hidden Mickey Cookies
Ingredients
1 box gluten free sugar cookie mix
1/2 can (about 7.5 ounces) pure pumpkin
1 tsp baking soda
1 tbs pumpkin spice
1 tbs water
1 tsp vanilla extract
1/2 bag chocolate chips (or nuts, raisins, whatever strikes your fancy)

Directions
Preheat the oven to 350. In a large mixing bowel, whisk dry ingredients. Add pumpkin, water, and vanilla, beat on low-medium until smooth. Mix in chocolate chips. Using a large ice cream scoop, arrange cookie dough on a greased baking tray with 1-2 inches of space between. Use a small ice cream scoop to add the ears, and bake for 13 minutes, or until golden brown and dough bounces back when touched gently on top. Remove to a cooling rack and enjoy!