Day 7

This time last week I was hanging out with friends, drinking wine, planning for a shower with special soap, and an early morning wake up alarm with time for another shower with special soap.  A lot has happened since then obviously, more than just your everyday week – but all in all I think I’m actually right where I need to be healing wise.

So let’s just start out by saying I slept like crap last night.  And I got a little angry and frustrated because of the sleep deprivation.  There is a stretch from 10:30pm to 6:30am where I take some sort of pill every two hours.  I’m also supposed to switch out my ice every two hours…so I reasoned that I would just get up…get the pill, switch the ice, and go right back to sleep.  Stupid plan.  It doesn’t work like that at all actually.

Here…let’s just do a walk through of how Heidi gets up to do anything…

  1. remove blanket from lap
  2. set phone on table
  3. put on glasses
  4. reach far to the right to reach the recliner arm that controls the foot rest – lower foot rest
  5. remove pillow/s from under knees
  6. begin leaning forward
  7. shimmy/lift/scoot to the front edge of the recliner using mostly just my arms
  8. set on edge of recliner and put on back brace
  9. reach behind and grab now melted ice pack and put in basket of the walker
  10. take a drink of water and place cup in basket of walker too
  11. tuck phone into the front of the back brace
  12. position walker in front of chair
  13. take deep breath (or 2)
  14. position feet carefully,  grab handle of walker, take deep breath
  15. stand up
  16. breath out adjust back brace
  17. start walking toward bathroom
  18. leave walker in bathroom doorway
  19. keep walking the loop a couple times to loosen up and get the blood flowing
  20. go into bathroom
  21. drop drawers, sit carefully, do business, stand carefully, pull up pants, flush, wash
  22. walk loop a couple more times
  23. fill up water
  24. exchange ice for frozen one
  25. retrieve pill the phone told me I needed
  26. load walker back up
  27. head for recliner.
  28. carefully back up and position feet
  29. take a deep breath
  30. use walker to carefully lower down to edge of recliner
  31. begin preparing ice pack
  32. remove back brace
  33. Shimmy/lift/scoot back to secure ice pack in place
  34. position pillow under knees
  35. reach for recliner arm and slowly raise feet
  36. carefully shift weight and recline more
  37. tip backwards a few notches
  38. drink water
  39. adjust pillow
  40. float blanket over lap
  41. remove glasses
  42. fall back  asleep.

So…more or less every time I have to get out of the chair – that is what happens.  So it was stupid to think that I could just get up every 2 hours and take my pill.  Tonight I will do what I did the night before and get up for every OTHER pill.  That at least goes faster – because the pill waits on the table next to me, and I plan for the ice pack that actually lasts longer – I just reach over and take the pill and go back to sleep.

Last night I got frustrated with the fact that I didn’t plan ahead better and think it through – and so what little bits of sleep I did get were not good.  The 6:30am pills are both pain and muscle relaxers, and steroids all at the same time, so I doped up well, put good fresh ice down and crashed for the next 4 hours without skipping a beat.  That sort of made up for the crappy sleep overnight – but admittedly had my day schedule all messed up too.

Oh well, a late breakfast, late coffee, late lunch….late afternoon shower, and I’m mostly over it all.  Dinner smells amazing (German style goulash with rice) I’ve got all my jewelry back on and blue toenails courtesy of the resident teenagers!

Tomorrow afternoon I head home.  I’m anxious to get home and see my own kitties and doggies…and my husband and I’m guessing more friends too.  I don’t have a recliner, so I’m hopeful that I’ll find some comfortable positions on my couch and in my own bed where I can still ice my back and sleep.  My pain is well managed, and with the addition of the steroids it seems like the ticked off nerves are in a better mood too.  I’m hopeful my journey home will be uneventful… 2 hours in a car shouldn’t be too much worse than a few hours in a recliner.

I seem to be right on track for progress in the healing.  I get a little stronger every day, walk a little farther, and do a little bit more.  I just have to be patient and let my body heal.

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1 Week down….many more to go!

Woe is me

I think it happens to us all.  Things don’t go like we think they should…and we get caught up in the spiraling self pity bubble.

It can be triggered by almost anything, and once it starts, it can escalate so quickly into a full blown pity party before you even notice.  Self doubt, feeling sorry for yourself, everyone is against you, nothing goes right, traffic sucks, you get a flat tire, you trip over something, your alarm doesn’t go off, insomnia strikes, you spill your coffee, someone ate the last cookie…doesn’t matter what starts it…pretty soon you are that bratty little 4 year old who is throwing a tantrum just because you can.

Man, have I been there.  And even while I know the tantrum is an overreaction – I’m so invested by this point that I won’t stop just on principle.  I’m stubborn that way – ask my husband!

This week has kind of been this way.  It’s the perfect storm, all the planets align, if it could go wrong, it probably will…and go!

  • busy schedule at work – check!
  • fighting a cold off – check!
  • mortgage payment due – check!
  • snow and ice – check!
  • tired – check!
  • dog collar breaks – check!
  • tire goes flat – check!
  • hormones kick in for extra drama – check!
  • -4 degrees in the morning – check!
  • drop your phone on carpet and crack the screen – check!

One or two of those things, and you can probably deal, right?  But get hit with a bunch of them…or all of them…in the span of a couple of days and a full blown pity party strikes.

I start to question everything, I start justifying old habits and behaviors, I lash out at people, I burst into tears, I curse the unfairness of it all.  I stomp around and slam doors.  I say things I know I shouldn’t.  All because I feel sorry for myself.  Because obviously, it’s all my fault.  It’s all the result of my poor choices, and I’m getting exactly what I deserve for doing what I did.  I should have done this…I could have done that…I shouldn’t have done it, but I did it anyway.  My emotional side is vindicated…proven correct…totally justified in my reactions and the resulting consequences.  I got what I deserved.

Sigh…but my brain and my heart  know better.  Sure, these things happened…but it’s not worth the response I’ve given it.  It’s just stuff that happened – I didn’t do anything to cause it all to happen – and I need to not make it into more than it is – my reaction needs to be less than or equal to the action.  I need to exercise self control, and make rational choices.  Pretty much – I need to get over myself.

But it’s hard…it’s much easier to feel sorry for yourself, and pout like a 4 year old who was told (again) he couldn’t have a cookie.  I mean, we all want that cookie, even if we know it fell into the dirt – because it’s a COOKIE with magical powers to make the world a better place! It’s not rational to expect the cookie to have magical powers, and it’s not rational to eat a cookie that has fallen in the dirt, and it’s hard to pull yourself out of the self-pity bubble.

As I’ve been wallowing around trying to find my way back to sanity, I know that it’s not nearly as bad as all that.  I know I didn’t cause all this “stuff” to happen.  I’m not being punished for some deed.  It’s just life, and how I respond to adversity builds character and strength.  I can be a bratty 4 year old and feel sorry for myself and hope that someone will come along and show me some compassion, wipe my tears, dust off my knees, and hand me a new cookie – or I can be an adult and pick up the cookie, toss it in the trash, and grab myself a new one.

I still don’t have the answer to “why me???” in my pity party – but I’ve decided that it doesn’t matter in the grand scheme of things.  I am learning to trust God’s plan for me, even when I don’t understand it.  I’m trying to have an open mind to the life lesson that every challenge presents – trust, patience, resilience, paying attention to what really matters, being kind, being thankful for blessings in disguise, and finding joy in the midst of turmoil.

Now, if you’ll excuse me…I’m going to go find myself another cookie!


In the MRKH community, we talk a lot about stages.  Not stand up on a stage and perform to an audience type of stages, but stages of acceptance, grief, treatment, development, healing, etc.  We also talk a lot about our journey as it relates to these stages.

From a purely physical perspective, MRKH affects us all a little differently.  It’s a genetics thing, and while Amy could explain all the science behind it, just know that every attribute about us as a human is controlled by our genetic makeup, and when there are little bumps in the road, different things happen.  We didn’t get MRKH because of something our mothers did or consumed, it’s not recognized as a side effect of some medication, and there aren’t any definitive environmental links either; it is simply that at a particular moment in development of the embryo, a specific gene didn’t get the message it was supposed to create a cervix, or uterus, or vaginal canal.  Generally speaking, women diagnosed with MRKH have an incomplete reproductive system – the organs just don’t form correctly or are missing entirely.  Often, there are also related complications with the renal system (kidneys), skeletal/spine issues, and other things.  In my case, I have both ovaries, fallopian tubes, and some uterine tissue – but the news never made it to the correct gene to fuse those tissues together for a functional uterus, create a cervix, and make my vaginal canal of typical length.  Apparently, my kidneys got a corrupted message too – my right one decided to just stay and hang out in my pelvis, since I wasn’t going to get a uterus in there.  I did however get a bit of a head start on the vaginal canal – a whole centimeter of depth!  As it turns out, that was quite handy for me in the “treatment” stage.

Again, because we all have MRKH a little differently, our treatment for the physical anomalies varies as well.  It even varies greatly by country and culture.  I’m in the USA, so I’ll just speak about options here – but if you are in other parts of the world, sometimes you have very different approaches to treatment.  Additionally, because medical biotechnology advances constantly, what treatments are widely used will vary as well from generation to generation.  I was diagnosed at 18 years old, and it was 1989.  It was a time of many advancements in medicine, with procedures changing as technology advanced.  It was also during a time when “test tube babies” and treatments for infertility were getting some news time.  But I was 18 and my primary concern was “how do I stretch out the vagina so I can have a more or less normal sexual relationship?”.  Well, my doctor said that because I already had a start at some vaginal depth, it would be pretty easy to stretch it out.  I could use plastic molds to do this, or I could just attempt sexual intercourse with a gentle and patient partner and stretch naturally.  I had a fiancé, I had a trip planned after I graduated high school, and you know, I was planning to lose my virginity…so…I went with the stretch naturally method.  It was much less embarrassing to me, and as it turned out – worked just fine to get me “custom fit” for my fiancé.  Other women in the USA chose to have a vagina created surgically.  There are several procedures offered to created, and generationally and regionally they vary.  McIndoe, Vechetti, and Davydov seem to be the most popular surgical options.  I really haven’t had or needed any other treatment for MRKH.  I get regular medical care and gynecological exams, and since I still enjoy an active sex life, my vaginal depth has been maintained.  I did go to a fertility clinic at one point to discuss options of IVF and surrogacy, but again, it was in the early 1990s, and not all the states had the same laws about it, and it was not generally covered by insurance, and with the estimation of costs – the option to pursue it was taken off the table pretty quickly.

So those are the physical stages of diagnosis and treatment for me.  I found out I had MRKH, I created a vagina, I couldn’t afford to pursue IVF and surrogacy, so my treatment was basically complete.  Clean and simple, right?

But the emotional side of things has a habit of sneaking in every now and then and shaking things up…again!  So I’m sure you’ve seen the 5 stages on the road to acceptance before:  Denial.  Anger.  Bargaining.  Depression. Acceptance.  Maybe you’ve even been able to apply them to areas in your own life.  But looking through the lens of MRKH and our lifelong journey, it is not just one loss or trauma we are dealing with, but many that are intertwined.  The trauma of diagnosis; the reality of infertility; the shame in being “not normal”; the sheer nature of creating a vagina – through dilation or surgery; the grieving for children you will never have; the effect infertility has on relationships; and I’m sure the list will continue to grow.  Many times I feel like I do the 2 steps forward, and 1 step back thing.  Different things set me off, and different things have bothered me over the years.  I’m well past the denial stage, and most often I sit at the acceptance end of the stages…but then I see a meth head youngster who is pregnant and destroying the child growing inside her – and I get MAD.  Or I see a beautiful and healthy young mother who is pregnant with her 7th beautiful healthy child (yeah…this is a true story), and I get a little depressed – happy for her, but yearning for the ease of pregnancy and wondering if she’s ever had a miscarriage and could maybe understand the struggle of an infertile woman.  I don’t usually linger in these thoughts for long…but they do come up from time to time and catch me off guard.  I try and get firmly back into the acceptance stage – because it’s here where I can be the best me!

When I am in the acceptance stage, I am strong and positive.  I’ve learned from my experiences, and I’ve healed…just a little bit more each time.  I can spend my energy doing what I can to make a difference.  To mentor.  To guide.  I can talk to a young woman considering treatment options, and give her the best advice I have.  I can be happy for the healthy pregnant mom of 7.  I can enjoy the adorable pictures of miracle surrogacy babies.  I can be strong and encouraging for my MRKH sisters around the world.  I can work hard and help to raise awareness and reduce the shame of having been born with MRKH.  I can talk about not having a uterus and having to “make my own” vagina to random strangers.  And I know that I am strong enough to not let MRKH dictate my life, and to get my butt back to acceptance as quickly as possible.   The more actively I work to promote MRKH, the more healing I do not only for myself, but as an example for all my warrior sisters!