Girl Time

Over the course of the last few years, I’ve begun to accept that I can’t get through this life without my girlfriends.  They are there for me time and time again, even when I think I don’t need them…I really do!  And in the last few months in particular, I have made a conscious effort to make girl time a priority.  And my SOUL appreciates it!  No really, it is more important…vital…than I ever expected it to.  I need to laugh, I need to talk, I need to listen, I need to connect on a level that no one quite gets – except my girlfriends.   And you know what, my girlfriends need this too.

This past weekend I did my annual first craft show of the year.  Stress, long hours, hard work, a booth neighbor with migraine inducing lights shining RIGHT IN MY FACE, and hours and hours of talking with the public.  But at the end of the day, I got some much needed girl time with my dear friend Yvonne.  We got caught up on our lives, we talked about snow and spouses, we talked about firewood and flooding, and we laughed and cried a little, drank some wine and had some really good long hugs!

Also last weekend, my best friend on the planet, Eileen sent me a text – Hi Honey, how are you?  Are you ok?  My BFF-ESP kicked in….  Awww…how does she always know???  Because she knows me so well, and we really are connected soul-deep.  I assured her I was fine, told her about the craft show, the lights, and the girl time.  We set a phone call date for Tuesday.  On Tuesday we laughed and got caught up on the last week or so, talked about spouses and work obligations, summer plans, we laughed and cried a little, we talked about priorities and standing up for myself.  We made plans to talk again next week.

And also last weekend, we had Girls Night In at church.  Its our new women’s ministry group where we host a monthly get together for ourselves and women in the community.  We laugh and play crazy games.  We spend some time in the sanctuary talking about God and the role of women in the bible, and in our lives.  We eat fabulous food, and we laugh and talk and pray.  This month we also planted flowers to celebrate spring, and talked about some options for service projects – and you know what came out as the favorite idea?  Working with organizations to support disadvantaged women and children in our area.  Not sure what that will look like exactly – but I’m sure some “drive” of some sort to collect things women and children need – diapers, clothes, feminine hygiene products, toys, blankets, and the like.  I’m excited to work with my friends over the next few months to make a difference in some local lives.   Working on projects together brings us all closer – to each other, and to God.   When we are serving others, we are serving God.

And while I wasn’t able to participate because of my craft show, this past weekend was also another fabulous gathering of girlfriends in Ann Arbor, Michigan. It was MRKH Day  – A day of Education, Sharing, and Support for people with MRKH.  This special day is sponsored by the OB/GYN department, Gynecology division of Michigan Medicine In cooperation with Beautiful You MRKH Foundation.  A full day of MRKH information and support…for those of us with MRKH and our parents and partners.  The full day conference event is followed by an evening social – you know, the after party!  I haven’t had a chance to attend an MRKH conference yet, but from all the reports of those who attend…they are incredible.  While we all enjoy the online support groups, Facebook friends, and the incredible opportunities for “instant support” we can find on the internet – nothing quite compares to meeting another MRKH woman in person – and a whole house full of them….MIND.BLOWN.

Now, don’t get me wrong…I LOVE my local girlfriends…wine, chocolate, giggles, tears, talks, phone calls, texts, the whole shebang…but when you have something in your life like MRKH…well, you’re always just a little detached from all the other women in the room.  You can’t quite relate to the period talk, or the parenthood talk, or the grandchild stories – and how in the world can they truly relate to us?  They try…with valiant effort…they ask thoughtful questions and try to understand my perspective…but they don’t quite get it.

The first time I got to meet another MRKH woman face to face, 3 of us got together for dinner.  It was effortless – we instantly connected and could relate to each other just like life long friends.  We laughed, talked about diagnosis and treatment, life choices and having our choices taken away.  It’s been close to 3 years since that encounter….I’ll let Jen tell it, as I think she summed it up perfectly!  I’ve met up with others since then a handful of times.  And each time it’s the same kind of instant connection.  And each time I spend some girl time with MRKH women, I heal just a little bit more.

That’s what girl time is about I think – it’s restorative.  It’s a chance to look at life from different angles….share the heavy burdens….get some insight from trusted friends.  While I love my husband and family dearly, and love to spend time with them – nothing quite compares to girl time.

I’ll leave you with this song by the incomparable Reba McEntire – it’s a new favorite!



Beautiful Women

I’ve had some great conversations with some wonderful women over the past few days – weeks even.  It’s really making me treasure the special bond I have with so many incredible women.  I’m not sure I ever truly appreciated it until I really started reaching out to other women with MRKH.  The sisterhood within MRKH is a powerful thing.  I never had a sister growing up, so finding thousands of them as an adult has filled my heart to bursting.  I find that same beautiful bond with my sisters in Faith, and again it wasn’t something I appreciated until I made the point to reach out to them.

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  Matthew 7:7

These are just some of the incredible women in my life, and why they mean so much to me.

My Gram…gracious, loving, forgiving, funny, and fun.  She is in the final stage of her life, she’s 93 and is fading fast in hospice care.  She set a fine example of being a wonderful human, a hard working nurse, wife, mother, and grandmother.  She has instilled a sense of peace and faithfulness in me, and her Faith inspires me deeply.

My Auntie, who is giving such tender care to my Gram.  Her independence and strength, her determination and forgiveness.  She has taught me to question and to remain curious; to stand for what I believe in.

My Mom, she taught me hard work, responsibility, and sustainability.  I’ve learned to be independent and self sufficient, to work hard for what I believe in, to not hold grudges, and to forgive with every ounce of my soul.

My BFF, Eileen.  She has been there through thick and thin, through sorrow and celebration.  We have laughed until milk came out our noses and we peed our pants just a little – and we have spent hours in tears as we each battle our own personal demons.  We have prayed, and questioned, and rejoiced.  She is everything to me -a best friend, a sister, a confidant, and of course – a tattoo-twin.  She teaches me compassion, humor, humility, and that hard work and hard lessons often go hand in hand.

Janine has been a fixture in my life since high school.  She was there the day I had my diagnostic laparoscopy and it was confirmed that I would never carry a child.  She inspires me with her Faith in God, her love of family, and the love she has given to her adopted children.  She has taught me that every challenge has a purpose, that prayer absolutely works, and that if you just take life one day at a time, it’s much easier to recognize and count your blessings.

Karen – the big sister I never had until the day we met.  She has a giant heart, a wicked sense of humor, and inspires deep conversations at the drop of a hat.  She has taught me resilience, trust, and forgiveness.  When I was finally ready to reach out and follow my Faith path with purpose, I called her first…knowing she would talk straight and would understand all the subtleties of my journey.  Our support is a two way street, when she has a problem she needs to talk through, she calls me – and I do the same thing.  We talk girl stuff: make up brands, shoes, and eyebrows – we talk wife stuff: husbands, houses, and laundry – and we talk relationships: mothers/daughters, friends, and God.  We laugh, we cry, we pray.  She keeps it all real in my life.

Chel – the best friend I haven’t met yet.  Chel and I met online in a south beach diet support group and we just clicked.  We are about the same age, height, weight, etc.  We’ve both spent time in the military, and over the years we’ve just bonded more and more.  We text almost daily, and when there is more to say we email.  We’ve actually spoken on the phone a couple of times – but usually  it’s just texts.  She keeps me accountable and honest with myself.  She encourages me to make healthy choices, both physically and emotionally.  She gives me honest feedback and offers a perspective from outside my own little bubble.  When I finally make my way to Michigan, we WILL finally meet face to face and I imagine there will be zero awkwardness and a long anticipated hug and cup of coffee!

There are a whole long list of international MRKH sisters that I treasure.  While most of these sisters I’ll never have a chance to meet in person, we talk regularly through social media and messaging apps.  Deepika of course, my beautiful Indian sister.  She shares recipes with me, wishes me a good morning, reminds me to eat my breakfast, and shares the joys of raising her step-son with me. I am the designated auntie and get to talk to them both on the phone occasionally. My beautiful Faria who is so smart and courageous, doing her part to make a difference in Bangladesh.  Laura, Claire, Aysha, and Hasna in London/UK.  I exchange letters and message them routinely.  Melissa and Kelly in the Netherlands.  Lise, Ally, Bianca, Elaine, Christine, Nicola, Karina, and so many other sisters scattered all over the world, and all of them working to make a difference for women with MRKH.  It’s a beautiful thing to see.

Stateside MRKH sisters too, Amy, Christina, Kristen, Lacy, Brittany, Lindsay, Jessica, Chrissy, Allison, Hailee, Kimmie, Tina, Jaclyn, McKenzie, Krystina, Denise, Dawn, Sara, Patricia, Kay, Kayla, Jen, Danielle, Alyssa, and Lindsie.  So many beautiful, strong, courageous women.  All speaking out in one way or another, all making a difference in the lives of women with MRKH.  And all willing to stop for a moment and chat when you need to.  The outpouring of unconditional love is quite literally staggering – and that fact that each and every one of them “gets it” when you say whatever is weighing heavy on your heart….wow.

Giant hugs and thank yous to a few very special sisters who have taken some time recently to help me with perspective and direction…sharing their hearts, their beliefs, and their love.

Brittany, you my darling girl gave me such peace when we spoke.  Sharing your knowledge and own journey with me helped immensely.  I’ve told you many times that I feel a very strong pull and connection with you…someday soon we’ll have the chance to meet in person, share a much anticipated hug and snuggle doggies together!  I love you, girl…thank you for everything! <3

Patricia, I don’t even know how to thank you…where to start.  Your wisdom and your Faith have been incomparable.  I’ve enjoyed every conversation with you, but when we connected recently when I was more or less in crisis…your love came through bright and strong.  Your wisdom, empathy, compassion, LOVE, FAITH, reassurance…you lit my path and confirmed what my heart already knew.  You inspire me, you guide me, and the gifts you add to my life are immeasurable.  After our talk and prayer session, I left feeling more joy and peace than I had in many months.  Thank you for lighting my path, and walking along side me as I stumbled.  I thank God daily for putting you in my life.

I am lucky enough each Sunday to share worship and prayer with more incredible women from our small congregation.  We are led by Pastor Erica, a beautiful and humble young pastor.  I enjoy her sense of humor, and her honest and direct way of just putting it all out there without sugar coating it.  I’ve had many deep spiritual conversations with her of course, but I also treasure the casual conversations fostering a love of community and “girl time”. Karen of course attends and holds my hand when I need it – and passes me the kleenex.  Lisa who encourages in her quiet and steady way, and has become a dear friend in just a few months.  Good food and a good dog might play into that a bit, as well as a fabulous sense of humor.  Sally and Diane, Beth and Rita – all strong and faith filled women who all make a difference in my life, even if they don’t know it.  Watching all of you, being surrounded by your unconditional love and support is a treasure and an inspiration to be and do more in my own life.

As I look around, physically and metaphorically, I find myself surrounded by women who are bold and strong, faith filled and compassionate, kind and courageous.  I learn so much from each of you, and am truly blessed by each of your presences in my life.

The past few months I’ve been making a great effort to walk a Faith filled path to enrich my own life, but also to foster my relationship with God.  Along this path I am continually visited by incredible women who nudge me this way and that, shining a light when I need it, holding my hand to guide me, handing me bushels of tissues when I need them, and inspiring me to be the best ME I can be.  I am truly blessed.

Be strong. Be Brave. Be fearless. You are never alone.— Joshua 1:9

Blessed is she who believed that the Lord would fulfill His promises to her.— Luke 1:45

Dusty Boxes

It’s the holiday season, so I think we can all relate to that stack of dusty boxes in the loft that waits for me every year.  Lights, decorations, ornaments, Christmas CDs, the fake tree, and all that entails preparing for the holidays.

This year as I headed up the stairs to the loft, flashlight in hand, I was also looking for another box that had stuff from high school in it.  I was actually looking for the old hymnal my grandmother had given me when her church bought a new set.  I’m not sure why exactly I was looking for the hymnal, it just seemed like a good idea.

I found the Christmas boxes, and specifically the box with ornaments and CDs in it.  I set that one aside, and rummaged through the other boxes to make sure there wasn’t some treasure I needed from them.  Nope, I had what I wanted.  I started looking around to see if the high school box was near by and readily identifiable.  Shifted a few things around and SCORE!!!!  There it was.

I cleared out a spot, and popped the top off….anxious to take this little walk down memory lane in search of my hymnal.  Sure enough, there were the expected Madonna and Cyndi Lauper albums (yes, vinyl….), Phil Collins of course, Air Supply, Twisted Sister, and some others – I had a wide range in musical tastes.  The box of dominos was in there, a few things from the Class of 89 after party that my BFF gave me.  Some much loved books – the Little House on the Prairie series, my I, Monty book, the infamous No Flying in the House book from second grade (I “borrowed it” from my teachers library…but in my defense when I got in touch with her about 10 years ago, she said I didn’t have to return it!) , a few paperback romances, JrROTC text books, my child’s bible from Vacation Bible School, but sadly….no hymnal.  A little disappointed, I started flipping through some other folders and paperwork that was also in that box from my time in the military.  Promotion certificates, award honors, and that sort of thing.  And then I found a copy of my medical records from when I was in the Army.  I kept a copy of it all since I had so much trouble with my shoulders and needed to have accurate records before the VA took over my file.

I started looking through the medical records, and then thought….hmmm…I wonder if my MRKH stuff is in there too?  I know I had to get copies of much of it before I joined…so maybe….  Sure enough, towards the back I did find copies of some things.  I kind of took a deep breath, and sat down to read it more carefully.  I hadn’t seen this paperwork in 25 years.

Wednesday, Feb 22, 1989

Pelvic Ultrasound:  Real time examination of the pelvis demonstrates a pelvic right kidney which is otherwise unremarkable.  Left kidney is normally positioned and also unremarkable.  I can identify no uterus or ovaries.  I do not see a normal-appearing vaginal canal.  No fluid or mass is seen in the pelvis.  It is possible that very tiny structures are present and are not within the resolution of the sonographic examination.  Other means of evaluation should be made.  If a cervical os is visible on pelvic examination then hysterosalpingography may be of further use in identifying and delineating the uterus.  Clinical correlation recommended.

Conclusion:  No uterus or ovaries are identified at sonographic exam.  See above comments.  

(note: Hysterosalpingography (HSG) is a radiologic procedure to investigate the shape of the uterine cavity and the shape and patency of the fallopian tubes. It entails the injection of a radio-opaque material into the cervical canal and usually fluoroscopy with image intensification.  I did NOT have this done.)

March 27, 1989 – Dr. L’s office, OBGYN

18yo F amenorrhea, concerned.

Bloodwork done – seen without chart!

US – Small uterus – ovaries not seen – according to mom

Exam:  Breast:  Nl development

Abd:  Soft no masses

Pelvic:  Vulva – virginal Bas – 0

Vagina – short, 1 1/2 cm no cx

cx – not seen ? felt


RV ? uterus & ovaries small if present

Imp:  R-K-H Syndrome (Rokitansky – Kuster-Hauser)

Plan:  FSH, LH, Prolactin, DHEA, Serum T, Thyroid Panel.  Will need diagnostic laparoscopy to confirm.


Operation Report: 5/16/89 Dr. L

Preoperative diagnosis:  Mullerian agenesis; primary amenoorrhea

Postoperative diagnosis:  Same; the syndrome is called the Mayer – Rokitansky-Hauser syndrome.

Operation:  Diagnostic laparoscopy

Surgeon: Dr L.

Description of the Operation:  Under general anesthesia the patient was prepped and draped in the usual manner.  Examination of the patient’s genitalia showed normal-appearing external genitalia, but indeed the vagina did end in a blind pouch approximately 1cm in length, with no communication that could be seen with any other structures at the end of this pouch.  Attention was then turned to the abdomen, where a 1 cm periumbilical skin incision was made.  A Verres needle was inserted, and a pneumoperitoneum was created for three liters of carbon dioxide.  A secondary puncture was placed in order to place a probe into the abdomen to allow better maneuvering of pelvic organs.  It could be immediately seen that there was no normal-appearing uterus.  The bladder was seen.  There was no evidence of endometriosis or adhesions.  Attention was turned to the right side.  Along the right sidewall one could see a normal-appearing ovary with some evidence of old corpus luteum, a normal-appearing tube and what was thought to be a very small rudimentary horn of the uterus.  This was smaller than the uterus and had no communication with the vagina.  Attention was turned to the opposite side, where again along the sidewall was the left ovary, along with a normal-appearing tube and again a very small rudimentary horn of the uterus.  These two horns were not connected, nor were they connected to the vagina in any way.  This fits the classic syndrome of Rokitansky-Kuster-Hauser syndrome.  The remainder of the pelvis and upper abdomen were inspected.  The appendix appeared normal.  There was  bulge where I though very possibly the right pelvic kidney was seen.  The liver and gallbladder appeared normal, as did the upper dome of the diaphragm.  No other abnormalities were seen, and with this the procedure was terminated.  The patient was taken to the Recovery Room in satisfactory condition. 


And just like that.  I was diagnosed with MRKH.  As I’ve posted before, I met with the doctor a week or so later and we discussed my diagnosis and “treatment plan” as it were.

There were a few other pages in my medical records that discussed fertility and that sort of thing, but nothing with much detail.  IVF and surrogacy were still so new in the early 90s that it wasn’t really an option we could have considered – especially since I was active duty military, and my marriage kind of blew apart at about that same time.  I think the chart note reads, “just exploring options for childbearing and will probably pursue adoption since surrogacy isn’t widely available.”  Pretty much sums up my infertility treatment while I was in the Army.  It was probably about this same time that I blew out my shoulders, and the next 100+ pages of my medical record details all of that.

It was interesting to me to see these early MRKH records of mine.  Morbid curiosity as much as anything, and I was wondering what the date of my surgery was.  That was the day that I remember vividly hearing that for sure I did not have a uterus.  I don’t think he told me the MRKH syndrome part until my follow up appointment, but I knew the day of my surgery that I would never carry a child.  I’m not sure why I feel better knowing what day that happened.  I don’t know if it was the relief of the knowledge/confirmation, or the start of the grieving/loss associated with knowing for sure.  Either way, I now know that May 16th was the day my life changed forever…at least in that respect.