Little By Little

In April of 2012 I wrote about my many doctor appointments and labs. I haven’t bothered to write a follow-up post which is partly due to the fact that nothing and everything have changed at the same time. The appointments and labs in 2013 continued to be plentiful (I am, however, finishing my last round of labs for the year today!) and while answers were found, I am not feeling any better about the situation. It genuinely sucks that I am in constant pain, have to read every single label on what I am eating/drinking, my hair is the thinnest it has ever been, and most notably there is no fix.

After visiting the Endocrinologist last year, the PCOS was re-confirmed. She didn’t know if my hair would grow back, she didn’t know if I would be able to have children and she didn’t know if I would have complications with diabetes later on. She put me on Spironolactone, a medicine I have been on before, and I had great results. Spironolactone is an androgen blocker. For someone with PCOS, the testosterone in the body is unusually high and that elevated hormone level causes hair loss. It also helps me with abdominal throbbing and stabbing pains.

One thing that accompanies PCOS is insulin-resistance. It appears this doesn’t affect everyone the way I am affected by it. I’m learning that a lot of PCOS patients don’t experience the same things or with the same ease/severity. Like facial hair; some women experience hair growth, and I don’t have that at all…THANKFULLY! Over the past year I have struggled with my fear of diabetes and what it means while trying to eat well and be healthy and stay active in the gym. Fortunately, I was introduced to Paleo which is the perfect fit as it eliminates added sugar, wheat, gluten and grains. People always wonder why I try to follow Paleo. It’s not because I think wheat is bad. How can it be bad, it makes lasagna and bread! It’s absolutely a health reason that has been medically encouraged for me and one that my CrossFit coaches absolutely endorse and help me with. This summer I had my blood tested again and the Endocrinologist said it looked good and that I could try to get pregnant if I wanted to. I told her no. I didn’t want to go back off of my medications and lose more hair and have my skin go wild with cystic acne again.

Within a couple of weeks Patrick and I had talked it over and made a decision that if the doctor was behind it, we would go ahead and try. I emailed her to ask about trying to get pregnant. I stopped the Spironolactone and started Metformin to help with ovulation since I don’t on my own. I’ve never been so sick in my entire life. I spent a month and a half on medication that my body was having an increasingly horrid reaction to as the weeks went on. My hair fell out in chunks in the shower when we were on vacation in Jackson Hole. My braid was literally half as thick overnight. I made him take the trash out to the dumpster after I’d cleaned it all up – I didn’t want the cleaning people at the condo to see it. I stood in the mirror and sobbed.

We were on vacation and I could barely get out of bed. I was physically weak, had zero appetite and was constantly nauseous and had only really told Patrick, a couple that are close family friends and my boss what I was going through up until this point. Nobody knew. Even my mom wouldn’t know about this for another 3 weeks when I called her on the way to work and cried about how awful I still felt. I tend to blindside her with information. She’s learned to roll with it. I stopped taking the medication while in Jackson, but it has taken a long time to get all of it out of my body. While taking the Metformin I stopped going to the gym for 6 weeks, and I wasn’t at work very much either. Between not being able to get up in the morning and feeling terrible all day long, I was typically sent home by the most understanding person on the planet.

When I started telling people what was going on, I didn’t tell them the whole story. I told them that the Metformin was to help control my sugars. That’s also what it’s prescribed for (it is referred to as an anti-diabetic drug), and having an elevated risk of diabetes nobody questioned it. I just wasn’t ready for anyone to know what I was struggling with.

During the Metformin cycle, I went to an OB that I was referred to by my Endocrinologist and talked to her. She almost immediately offered to refer me to an infertility specialist for an IVF consult after learning I am a 32-year old PCOS patient. I had to choke back tears. I still have to choke back tears. She reminded me to stay away from all things sugary and inflammatory. There was also some scary test she wanted to do that I wasn’t on board with, so I asked if she would be offended if I got a 2^nd opinion. Of course she said no, so I set up an appointment with a new doctor.

Going to the 2^nd OB wasn’t any more promising. I had an ultrasound that revealed the source of my abdominal pain and no good news followed. Too many follicles on the ovaries. I asked if this is good or bad – what do I know? I thought I had kidney failure when I read one of my own lab reports last year – she hesitated a bit and then said quietly “it is not good”. They counted 50-60 immature follicles. I asked what was normal. One. One follicle is normal. Again, I was reminded of the sugar and inflammatory foods and offered a referral to a fertility specialist. Again, I was disappointed and choked back tears. Patrick and I have always drawn the line at IVF, for many reasons, and I’m also not up for the cycles of shots that come with fertility treatments.

So now here I am. Still withholding information from most of the people closest, and not so close, to me. And here I am with so much to bear, suffering in almost complete silence.

I’ve tried to talk to a couple of my friends about it. One has also been diagnosed with PCOS and when I asked her if it was okay to ask questions about what she’s been through she said yes and we traded a few messages back and forth; then I received a very cold “I’m sorry you’re going through this” and radio silence followed. Another friend told me diabetes/insulin-resistance was “no big deal” and that her “whole family is diabetic”. Based on these responses, I stopped telling anyone because it seemed people didn’t understand what I was going through and more importantly they didn’t want to.

My mom is helpful and adds levity to the situation. She told me not to fear the possibility of IVF and that I can live with her until the triplets go to college. This laughter and the funny thought of me and my mom under the same roof again regularly makes me laugh to myself…. but is quickly cut short when my sister Jennifer wants to know if I have boys if they will play hockey since Patrick and I love it so much. Um….

Outside of my close family friends, Patrick and my Mom (whom I’d sworn to secrecy because I didn’t want anyone to know), I had cut out my largest support system until the past couple of weeks. My friends that own the gym now know. I had to tell them. I had been sick and gone for 6 weeks and hadn’t told them anything. Then I told them I was trying to get pregnant and then I told them this wasn’t going to happen. They were right there with me for the entire emotional rollercoaster. Another friend and I went for a walk and I told her everything; after some teary eyes and chatting, she knew the whole story too. Very supporting people – these are the same people that have completely changed my life in a few very short years and continue to do so!

Outside of that, I haven’t spoken about it. I have never told Patrick that I got ahead of myself and looked at furniture for a nursery (even while thinking to myself that it was too early and nothing was guaranteed) or looked completely forward to hanging out with our friends with a new baby more than normal because the baby was the most wonderful baby I’d ever met. As for everyone else, I simply told people I wasn’t feeling well and left it at that, keeping all of the heartache to myself. Most people don’t press for information, which is good because I just wasn’t comfortable opening up. I tend to be private until the time is right for me, then I will share.

Patrick and I won’t pursue pregnancy further or consult with the fertility specialist. A decision so final is absolutely heartbreaking; I just wanted this to be so much easier. 'Wanting this to be easier'...this is a thought that rolls around my head frequently with the sound of total exhaustion and defeat. I don’t have the emotional fortitude to continue with doctor’s appointments and labs, and quite frankly I don’t know that I have the physical endurance either.

One question we have received is whether or not we would consider an egg donor. That answer is no, and I don’t care to elaborate. We have also been asked about surrogacy. That answer is also no, we will not pursue that option either. The next question is whether we will explore adoption. This, I don’t know. I don’t know where we sit with that, and right now that topic is off-limits for public sharing/commentary.

This is a tough road, and one which I have largely chosen to travel alone…until now.  I stopped writing last year after I received negative feedback mocking one of my posts. It caused me to question sharing things that are very personal to me and also the things that make me a total nut. Be kind, everyone is fighting their own battles that nobody knows anything about.