Patient Safety

I have been an active patient for the last 10 years due to baby-making and infertility, have seen 3 different doctors, gone to 6 different facilities involved with testing, multiple nurses, technicians, pharmacists, etc., and while my physical health has not been harmed, I feel like I have sometimes been dealt with in a careless manner by my healthcare system. I was in a very vulnerable position, as are all patients dealing with a medical problem, and when extra care was needed I hardly got any at all, fixing my physical 'problem' was the main concern, emotional and mental care were hardly a consideration, and neither was the fact that I may want to participate, have questions, make decisions, yada yaya.

That is why I am really excited by the mission of my new employer, Manitoba Institute for Patient Safety! We are committed to helping improve patient safety within the system, AND also empower patients to be engaged in their own healthcare. We have a lot of resources that can help you with self-advocacy, providing information about; your rights, how to ask questions, how to be informed, how to take part in decision-making, and more.  All of which I could have really used when dealing with multiple doctors, facilities, etc.

If you, or someone you love, have felt frustrated as a patient, whether related to fertility or not, or you just want to proactively be informed, a great place to start is www.safetoask.ca!
‪#‎safetoask‬ ‪#‎patientsafety‬ ‪#‎healthCARE‬

Infertility Interviews

Over the next few months I am reaching out into the Fertility-Challenged community and conducting interviews in the hopes of bringing some 'me too' stories to women who may feel all alone in their journey through deferred motherhood, and all that comes with it; delays, doctors, diagnosis, depression, etc. Any story is welcome, just because it's not the typical story (there is no typical story) don't underestimate the value of your story, because somewhere, someone just may need to hear your exact struggle, because it is also theirs.

If you would be interested in joining my interview series, please leave a comment with a contact address and I will be in touch. I would love to hear from you!

Gratitude

I learned the lesson 30 months ago that gratitude is an extremely powerful thing. I can say with certainty it was the first step to the joyful place I am in life today, but I had a moment where I first had to make a choice.

As part of my ministry at Church, I led women through healing principles and in late 2012 one of those principles was gratitude. The lesson material was great, but it was all head knowledge. Not that I didn’t have moments of gratitude but it was an attitude not a way of life. I decided I wanted to increase my gratitude so I took on one of the materials suggestions, to start a daily gratitude journal. I figured I would start January 1^st and try it out for one year. After a few weeks I was really enjoying it and noticing I was even more positive than usual.

Then.

Day 23

I had a miscarriage.

My furthest along to date, even Sean had suspected , and even though I couldn’t bring myself to test yet, we were enjoying sharing new plans. And that evening we shared tears instead. As I got into bed that night I looked at my gratitude journal sitting there and contemplated. Do I write something today of all days?! And the thought that flooded my mind was how grateful I was that this time I finally had Sean to share the grief with, and that even at our lowest point we had managed to find laughter together. And so that’s what I wrote.

The next day we had our small group.  We had built a family with these people yet at first we weren’t sure we could share immediately, still so raw, but God had other plans, He had one of our friends sing a song that included the lyrics “When my world is shaking, heaven stands, When my heart is breaking I never leave your hands.” Considering the name of my personal blog is ‘Lori in HIS hands’, I knew that was our cue to open up. And we were of course overwhelmed by the love poured out over us.  And so that night I again looked at my gratitude journal and thought, how can I not be grateful for the love God showed us through our friends.

Then the next evening we served at our ministry, and again wondered if we should try to  hide our raw pain. Only a few minutes with our community of leaders, whom  we purported to have an honest and transparent relationship with, and we decided to open up about our grief. We hadn’t always had safe people in Church to share with, and we were about to test the waters with our deepest hurt. And we were not disappointed. Once again, we were overwhelmed by the care people took with our wounds, how they hugged when they had no words, and the words of ‘me too’ poured out from unexpected places. And then the band played ‘It Is Well’ that night, an unexpected shift from the usual songs they played. And so again that night I looked at my gratitude journal and realized the very ministry that encouraged my keeping it has now proved the value in it so profoundly and I wrote in it that night.

And after that I didn’t even have to question each night if I would write, I just continued to find reasons in the coming days, weeks and months, no matter how hard it got. And today, 30 months later, I am still writing in my gratitude journal.

And through my gratefulness, joy has found me.

Infertility Land

I have a dear friend, a spiritual daughter, who at age 17 was diagnosed with cancer. Today, at age 19, she is cancer free, thank God, but the pain and trauma have left her scarred in more ways than one. Yet, it has been a time of beautiful creation too, she has blossomed into a fierce young woman (and I use fierce with all the best connotations possible) who has written some poignant and inspiring words out of this experience. Her blog posts and songs aren't afraid to voice the pain and uncertainties, but the underlying theme is always hope. Unquenchable hope. One blog post in particular resonated with me deeply. She talked about cancer as though it was a land she was forced to travel through, and her analogies struck a chord with my own journey, through Infertility Land.  Here's a few 'snapshots' of my travels through Infertility Land.

Despite the fact my parents spent 5 years in Infertility Land before I was born, and that I have Aunts & Uncles who have resided there, I had no clue I was living so close to it's borders.  In fact, I still have no idea when I really crossed into it's territory, there were no signs telling me 'Infertility Land 100 km ahead', there were no border crossing stations, there was no welcome sign to 'Infertility Land, Population 2 million'.  Even the people there seemed the same, at first.

But as time went on we noticed subtle changes.  I began to notice cultural differences, like men were seen and not heard, and even then, barely seen, at first I wondered if there were any here at all. Then I noticed a slight difference in language, a predominant usage of some words in particular but more so a tendency towards acronyms, like a secret language that you would only understand if you belonged.  Although there were some regional dialects within Infertility Land that I never picked up, I picked up the native tongue of Infertility Land pretty quickly.  Yet I still hadn't quite figured out our whereabouts yet.

So, what do you do when you are lost? You look for directions.  We were directed to the resident expert, one of two, and he seemed to know less than we did.  He tried to show us where we were, in vague and simplistic terms, like we had just taken a wrong turn and ended up there. Then he gave us what you might call a map, with wrong directions that even we in our limited knowledge knew was incorrect.  Just in case we weren't here by accident, he examined our modes of transportation and found nothing wrong, yet he gave us a special gadget anyway, one that should trick our GPS into heading towards Fertility Land.  That seemed like a good idea, for a few days, but then we realized how could we trust it was truly taking us in the right direction. But at least we had a vague map, and the 'You Are Here' circle was indeed inside Infertility Land borders.

We of course were certain we were just visiting.  Several times we saw signs 'Fertility Land this way', but every time we drew nearer to it's borders, or just managed to make it over the border, our vehicle would crash. Sometimes it was just a small fender bender, sometimes it was bloody mess. Every time we ended back up in Infertility Land.

Four years of getting nowhere, of feeling lost, feeling like foreigners, feeling like we don't belong. We were determined not to get comfortable and settle there, yet tired of getting our hopes up just to end up in another crash and still stuck here.  We finally resigned ourselves to finding a home, a permanent address in Infertility Land. At first, it was a gut reaction to another crash, I was bitter, frustrated, hopeless, and so I threw my hands in the air and said, 'Fine! You want me here, I'll stay here. Forever!' I was done with futile efforts of trying to escape.  I tried to get friendly with the natives. I tried to create a new community. My husband, always a homebody, seemed comfortable in the passive role most husbands had here, shut-ins - like ostrich's hiding their heads in the sand, pretending they didn't live at an address that broadcast their failure. I assumed our choice to settle would eventually lead to getting comfortable, but it didn't.  Of the natives I got to know, a lot were hostile, they spewed hatred for those living outside our borders, and those that weren't were either recluses or jumping aboard adoption trains out of the the country as fast as possible.  None of those were options we were comfortable with.

So after two years of unsuccessful attempts to become permanent residents, we decided to consult a different expert. One we should have consulted from the very beginning. An expert in all lands, not just Infertility Land or Fertility Land.  He gave us back our immigration paperwork, for now our Visa's were denied, we were deemed temporary visitors. The expiry date of our visitor status was blurred out and He wasn't telling us when we would finally be able to leave, we would be aliens in a foreign land for the foreseeable future. There was nothing we could do, provide, or control, to expedite our journey out of Infertility Land.  And so we once again began to explore the country-side, looking for the one road that would finally lead us away from here forever. The latest leg of our journey hasn't been without it's crashes, but one thing it hasn't been without is hope.

Because, now we have a different kind of hope.

An unquenchable hope.

My friend and I have mutually been inspirations of hope in our respective journeys, and another way she has inspired my hope is through her music, her first album was released yesterday and of course it is titled Unquenchable Hope. All of the songs are inspiring, but the one that touches my particular journey in Infertility Land is called For the Moment. I encourage you to find some hope through her musical journey, you can find the album here:

http://estherkoepnick.bandcamp.com/album/unquenchable-hope

Better Body Balance

It has been just over one year since I have ended the Clomid, and I know with certainty it was the right decision to end the treatment. While it technically worked, my eggs were more viable, and we learned more about what was going on in my body through it, God showed us after the 8 months it was just not the end of our path, it was only part of it.

I hadn't really shared much here about the Clomid part of my journey other than the initial treatment explanation, then the first month and last month. For those of you who don't know, Chlomid/Clomifene stimulates the release of a stronger egg, a more viable egg, so that if it was fertilized it had a better chance of surviving. This stronger egg that was stimulated would also be a second egg, you are ovulating 2 eggs per month, doubling chances of getting pregnant each month.

And also doubling all cycle symptoms.

And that was on the lowest dose, not only did I go up in dosage 2 times over 5 months, staying on the highest for 3 months, but the specific variation of this medication I was on builds up in the system so symptoms get stronger and stronger the longer you are on it. Not to mention, the last 2 months of treatment I also started taking a really high quality set of vitamins and they had a tremendous effect on my egg vitality (as demonstrated by the sustained viability I mentioned here), but also compounded the strength of every monthly cycle symptom.

So there I was, From February to April, feeling like I had rocks for ovaries for at least a week before ovulation and during ovulation. Then I had a sore abdomen (like I had done 100 crunches every day for the last week) up until PMS started. And PMS went from about 4 days to 7-8, and where I previously only had 1 or 2 symptoms that didn't bother me all that much most months, now I had 3-4 symptoms way more intense than before. And then, TMI, but my period went from a very light flow, with very minor cramping, for 3-4 days to a very heavy flow with 2 days of really uncomfortable cramping for 5-6 days.  All in all, I had maybe a total of 7 days each month that I wasn't in some sort of discomfort.

And of course, there was the estrogen fueled emotions. Granted I am a very emotional person every day of the month, but my PMS emotional sensitivity and quickness to cry is actually pretty tame compared to some women (no judgement, each person's hormones and emotions is there own, just clarifying my PMS emotions are not what some might think of when they think of stereotypical PMS). So, when I began to be much more easily frustrated, offended, sentimental and generally crying for no real reason, I knew the extra estrogen was messing with me. Unless you call Ellen giving a family a free new van a valid reason to weep uncontrollably. I don't, normally.

But that became my new normal. For the last year, this is the one symptom that refused to let go when the rest of the effects of Clomid did. It's not a lot of fun trying to stay composed when you are really fine but your hormones decide they want to have a complete melt down. And it's not just sniffles or dabbing your eye crying, it's often full on ugly cry and when I cry like that I get red and splotchy. I'm not into hiding my emotions but it's hard to convince others of that when you look like a wreck and are saying you are all good!

Interestingly enough I didn't even really realize this until the last few months. I've had a really hard year, some deep depression moments, some seriously frustrated and angry moments, some really sad moments of loss.  But when a pregnant friend kept apologizing for her heightened sensitivity and constant tears, blaming it on pregnancy hormones, it hit me! That's they key! My hormones are still out of wack from the Clomid! Yet, I didn't know what to do about it but wait it out.

Then, a friend who is very into natural treatments for everything thought to mention something to me about the medicinal benefits of essential oils, and through conversations and research I realized I might have an answer to my hormonal imbalance in something as simple as an essential oil. I started applying the oil 2 days before ovulation and already noticed a reduction in those symptoms and now I'm about to see how it fairs up against my PMS, but the biggest change is that my hyper-sensitive crying has reduced drastically! In the first few days I already noticed a huge difference! I can't wait to see what a body in better balance feels like!

To Mothers, From an Un-Mother

I was forwarded a blog post from a great friend who happens to be a mother.

It is from the perspective of a mother, who never had the struggle of trying for children, all 3 came easily to her. She writes about an important lesson she learned the first pregnancy, when she was full of joy and broadcasting it to the world. Some people just can't share in that joy, no matter how much they would like to.

She made several really great points. One being, infertility is often suffered in silence, so very often those around them are unaware of the pain they face, over and over again, each month. It is mostly a hidden grief so many people are oblivious to the impact of their declarations of parent-appropriate emotions. Second she acknowledged her own struggle with empathy even once she did know, and admitted her desire to have her feelings trump those of the infertile friend. This was her own personal experience but one I know that isn't an isolated situation.

The summary of the blog was to encourage mothers in particular to be sensitive, understand the continual pain, and to try not to do anything that just adds to the grief. I appreciate that sentiment, thank you. But I really hoped my friend who had sent the post hasn't been burdened with guilt for her sharing pregnancy joy and toddler trials. So now I wanted to offer my own words to mothers from the other side, and hope other people battling infertility will consider these words as well.

Over the nine years of trying without success to be a mother, I have encountered many different responses from women who are mothers but I have also encountered quite a few infertile women as well, and I have learned that mothers are not the only ones at fault for the hurt feelings that happen around infertility.

~We who fall under the label infertile, even for a season, sometimes choose our feelings over friendship, and we act like we have cornered the market on pain and strife.

~We who can't be labelled mommy can let jealousy, envy and resentment cloud our ability to see mothers as just woman who have different struggles than us, but struggles just the same.

~We who have empty wombs and arms can be so harshly judgemental for no other reason than our target was able to get pregnant and give birth, something they have no more control over than we have control over our inability.

The blog author mentioned she wanted her joy to trump the sorrow of the one who couldn't be a mother, but at times I have wanted my struggle to trump the struggle every mother goes through.

It took awhile for me to realize how unfair that was but it finally dawned on me, I don't compare any other pain, I don't begrudge someone dealing with anorexia because I have a problem with over eating. Hardships of motherhood are just as difficult as the hardships of infertility. I'm sorry to say my final lesson that hammered that home was learned at the expense of my sister, who had her own journey through infertility for 5 years, but when she had her first son and it wasn't an easy birth or newborn phase, and she didn't even complain, but as she shared her difficulties, my immediate reaction was to resent that her gratitude didn't automatically overcome her distress. It was then my eyes opened to just how insensitive I could be to moms, how insensitive a lot of infertile women could be to mothers.

I realize it's part of the society we live in, people tend to fall into ignorance to the impact of what they say or elevate the importance of our own feelings, but that doesn't excuse it, or help maintain healthy relationships. And there seems to be an increasing hyper sensitivity, rather than just compassionate sensitivity, around this area in particular.

Granted, it would be nice to have parents consider my feelings before they say something like 'if you want kids so bad you can have my brats', or 'have you tried _________, I hear that works', or 'why don't you just adopt', but I never want a friend to feel like they have to walk on egg shells around me or feel like they can't share the reality of their life with me, because then I am not being a good friend, or a friend at all really. My feelings are not more important and do not negate the feelings of my friends. It hasn't been as hard to change how I choose to react and feel about it now that I am aware.

And maybe I'm also really lucky that I have pretty amazing friends who really do respect and honor my feelings, and feel them with me, and so it makes it easy to value them over holding tightly to my pain. I am a lucky girl.

Results of Testing

I just came across a blog today that echoed where we are at on this fertility journey and it feels great not to be alone, because it is very rare you find yourself in the exact same place as someone else on this road.

Gone through rigorous fertility testing - check

Track with Fertility Awareness Method - check

Take Chlomid - check

Improve overall health with vitamins, etc. - check

Not pursuing any other forms of becoming a parent - check

After pursuing for so long, no longer pursuing any intentional conception techniques - check

And the reason for stopping is the same too. God said so.

She sounds a lot like me. Dealing with the need to participate in the process to make the waiting easier. Tired of waiting. Tired of it not being our turn. Trying to trust and obey God.

We've both come to the place of understanding that all our trying doesn't guarantee anything. In all these years it has done nothing to increase our chances, despite that statistically speaking they should have increased our odds. We've both learned that God is a much more worthy place to put our trust.

Neither of our desires for children have decreased, not in the least. Both of us still experience the pain of the prolonged period of patience. But we embrace His purpose for us, along with it His peace. It's not easy, and a lot of people don't understand, but my relationship with God has grown tremendously through this journey, which ultimately is the best result of this testing I could have ever hoped for.