"There is the mud, and there is the lotus that grows out of the mud. We need the mud in order to make the lotus," Thich Nhat Hanh.

Tuesday, April 15, 2014

I'm Back!

Holy cow, I haven't blogged in forever.

Since I last posted

  • I came back from England
  • We're getting married this summer
  • My bro Justin got married in December
  • I had surgery February 20th
    • No endo was found but my pelvis was pretty much stuck together with adhesions
  • My pelvic pain hasn't been a problem since
  • I'm back to work
  • Alex is awesome, she turned 10, and wants spring
It's amazing how busy life got once I got back to "normal."  Work and wedding planning and hanging out with family and friends, and also cleaning!  I can vacuum now without pain!  

I apologize for being absent.  I will try to post details about my surgery and I know some of you will be wanting to know about our upcoming wedding!

Monday, December 2, 2013

Unsung Lullabies Radio Show

Whilst I was in England visiting Tim, we did a Technical Difficulties radio show live with one of the authors, Janet Jaffe, of Unsung Lullabies on November 29th.

It was a very tough, emotional show, but it was worth it.

Please have a listen here.

Tuesday, October 15, 2013

I Saw My Endo Dr

Thursday of last week I went to a local gyn to make sure nothing was obviously wrong.  I got there and he said since I have dealt with endo so long, what did I want him to do.  I said I needed an exam and a shot of torodol if possible.  So he did an exam, didn't feel anything wrong.  Then I got the shot.  It helped for a little bit.  The doctor then told me that because of how much pain I was in I needed to call my endo specialist to make an appt asap.

I made an appt for Monday morning, so my dad and I went down to the Cities on Sunday.  We found a neat little Thai place to eat at, and then went back to the hotel and watched baseball.  I tried to go to sleep early but even with ambien, heat, and ice I couldn't sleep because of the pain.  So I caved and took some Vicodin.  That helped with the pain but then I was wired from the Vicodin.  I eventually fell asleep tho and got a few hours in before my appt.

At my appt, he did an exam and also did not feel anything wrong.  So then he says my endo is probably regrowing again.  I mean, I haven't had surgery since 2011 so it has been a while (thankfully!).  So he gives me three options:  increase my Danazol, try Lupron (oh hell no), or surgery.

I elected to go with option number one.  He said there's a 50-50 chance that the increase will work within a month.

A month.  You know, when I leave to go visit Tim.

He also gave me more Vicodin.  But if it doesn't work, there's a high probability of more surgery.

I'm overwhelmed.  I'm in a lot of pain.  I'm so frustrated.  I'm missing work.  I'm missing family stuff.



Tuesday, October 8, 2013

Pelvic Pain

Owwwww.

A week ago Sunday, my pelvic pain decided to flare up.  At the time I didn't think too much of it, since I do have the occasional flare up.

But it didn't stop.

That Friday I emailed my endo doctor, saying that something is going on.  I got the reply that he was gone til Monday.  I also put in a request for more Vicodin, since I was needing to take them more and more frequently.  I got an email back saying that I had just filled an rx last month for it.  Um...no, I hadn't since January.  I had enough to get me through the weekend (which I spent on the couch with my heating pad) and we got it all sorted out on Monday.

I talked to my endo specialist on Monday as well.  He says to wait another week and then if the pain is still there to make an appt to see him.

Is it scar tissue?  Is it endo?  Do we need to up my Danazol?  Do we need to change something we're doing in PT?

My PT worked me in for an appt Monday evening.  Today, Tuesday, I missed work.  I couldn't get my pain managed in a way that I could work.  I have another PT appt tomorrow.  I confessed to her that I was getting really worried about my pain and afraid that it was going to hurt like this again like it used to, but she said she's confident that it would never get to that point again.

I just want to work.  I go to the UK next month.  The next month I have my brothers' wedding in Florida.  I need this pain to stop.

Friday, July 26, 2013

Today Was Better

Today was so much better.  I woke up and the first thing I noticed was that my head stabbing was gone.  I quickly got up, showered, ate, and went to work because I didn't know how long my head would behave.

I made it through work and then some errands afterward.  I made supper, and then my head started to hurt and I fell asleep during the Braves game.  When I woke up I hoped that I wasn't snoring loud enough for anyone outside to hear me through the open window.

I think yesterday's blog post helped me feel like I got some stuff out so I could cope better with the pain and having to miss out on things.  I got used to being "normal" for the most part and I didn't want to lose that.  I still don't.  But now I'm not fighting it.  My health can change like the weather.  Everything is in change.  It's a lot easier to just go with it than to fight what it is happening.  I had forgotten that.

This weekend I want to get caught up with stuff around the house, and do my nails.  I haven't done my nails in over a week.  That's how crappy I have been feeling.  Now just to decide what I want to do with them!

So yes, a much better today, and I savored it.

Thursday, July 25, 2013

Migraines

Lately, my migraines have been getting worse and worse.  I saw a neurologist last month and he prescribed a med to take on the onset of a migraine and it did it's job, but the last couple weeks my migraines became more and more frequent.

I began to miss work.

I started to cancel social plans.

I can't believe this is happening.  Again.  I am finally doing well:  working, hanging out, making plans, keeping plans, saving up money for my trip to see Tim in November.  Then my bro and his fiancee decided to get married in FL in Dec so I'll need money for that too.

Then bam.

Pain.

I saw the neurologist again on Tuesday.  He agreed that the frequency of my migraines was becoming a problem, so he prescribed a daily preventative med, and then also I got four nerve block shots in the back of my head.  Yeah that sucked.  Now it's Thursday and it's still sore, no matter how much I ice.

I'm trying everything I can to get these under control.  And it's not enough.

I don't know if I can do this again, to watch everything I've worked so hard for slip thru my fingers again.  Seeing everything falling apart while I'm laying on the couch.

Tim says I can.  He reminds me that I've done it before, and I'll probably do it again in the future.

I have done it before.  So many times.

And I'm burnt out.

I'm doing what I can to make sure I don't start a downward spiral into a depression.  I am watching the Braves, I game when I can, I snuggle with a baby girl, and I do text with friends.  I also know that these nerve blocks should kick in soon and the preventative med should start to help before too long.

So technically it's not all doom and gloom.

But it certainly feels like it.

This week so far I've missed work two days, and cancelled two plans with family.  I was supposed to visit an out of town friend this weekend but I postponed it.  This is a friend I've wanted to go visit for the past how many years but I was never well enough to go, and now I was and my body is all like "ha ha, think again."  

Missing work and plans and pain was so last year.

I know I'll never be 100% pain free.  If it's manageable and tolerable, I can work with that.  I tried pushing thru these migraines but they just became too debilitating.
I just want to get back to work and back to my social life.

Sunday, July 14, 2013

Oh Hai!

Me and My Girl
I got a Chromebook for my birthday so now I can blog easier.  I was using my brothers' old Windows Vista laptop and 1) Vista sucks 2) it was dying and 3) Vista sucks.

So yeah, I had a birthday, I'm 29 now.  It was a nice birthday; the weekend before I was at the lake with Alex and it was just us, my parents, and their zoo (four cats and a bird.  Who can meow.  It creeps me out).  Then on my actual birthday (the 8th) I worked and then went out to eat with my bro, and then afterwards I hung out with a friend.
Alex enjoyed my birthday treats

What else has been going on:  work is going great, it's been busy but not too bad.  I played and passed "The Last of US" which was AMAZING.  My brother Justin proposed to his girlfriend so I'm getting a sister-in-law!

Exploring the lake shore
I went to a friends' girls' birthday get together yesterday.  Her girls are now 8 and 3.  I got them nail polish.  I had fun nomming, putting together toys, and I gave the three year old a mani/pedi and she was on top of the world.  I even got to hold Amy's two week old niece.

I held up really well during the party.  But when I got home...I started feeling sad.  It was the mani/pedi I gave Ivy.

I will never be able to buy nail polish for my daughter.  I will never paint her nails.  I won't get to teach her how to care for her nails and how to paint them.  I won't get to know what color combinations are her favorite.  Or if she'll like crackle or any other special type of coats.

I wrote to her last night.  I couldn't sleep.  Between the party and finishing "The Last of Us" yesterday, the daughter that I will never have was on my mind.  I won't spoil the ending of the game for anyone, but let's just say that there was a teenage girl and a choice had to be made on her survival.

I feel empty.

It sucks.

Sunday, June 16, 2013

Father's Day Part Two

You should read Part One before reading Part Two below.

A week or so ago, Tim mentioned that this year he didn't really want any cards for Father's Day.  He made the offhand remark that he wouldn't mind flowers, since flowers can have a memorial quality about them.

I remembered him saying that, so this past Tuesday, I went on to 1800flowers and yes, they did deliver internationally.  I picked them because being an MPR member, I could get a discount.

So I found a plant (an anthurium) and placed my order, to be delivered Saturday the 15th (today).  The next day, Wednesday, I received a call saying that they couldn't deliver that plant because the florist was out of it.  Okay, cool, not a problem.  The person calling gave me a list of plants that I could choose instead.  I wrote them down and said I would call them back after work when I had a chance to look.  So I get home from work, look through the options, and decide on the white hydrangeas.  I call and the customer service person that I get was very helpful, was changing my order to said hydrangeas, and then just as we're wrapping up he says that it it not deliverable in England.  Ok wtf, the first person I talked to said it was an option.  Okay, whatever, I tell the guy to just cancel the order and I would go back on the website to place a new order after I could sift through and find something else I wanted to send.  I do, I find the guzmania and place my order.  The next day, no call, so I assume there is no problem.

Fast forward to today, Saturday.

This past week was insane at work, things kept going wrong, and then plus all the flower mix up, I had totally forgotten to tell Tim to expect something today.  His flat has...issues so giving him a heads up would have prepared him to let the flower delivery people in to actually deliver the plant.  So he gets a call saying that they tried to deliver his order but wasn't able to make contact so he had to call them back to get it all figured out.  We were having a video call on Google Talk or Google Hangouts or whatever it's called this week, and he asks me, "Did you send me flowers?" and by his tone I thought he was mad at me for sending them, but no, it's just that I forgot to tell him so he could make sure he could actually get them.  I tell him to go sort it all out.  I start to make myself breakfast thinking that it'd be a little bit before we could resume our video call.  But he opens his flat door and his order is there.

Except that there are two plants.

So here I am, in the kitchen making myself pancakes, and I barely had the batter prepared before he video calls me and tells me there's two plants.  He moves his phone to show me the plants.

The guzmania was not one of them. 

One is an orchid, and the other is purple hydrangeas. 

I'm speechless and befuddled.  I'm all like what the hell, there was supposed to be one plant, ect ect.  Not really mad but just...how did it get so wrong?  Tim's a bit overwhelmed because all of a sudden he has a jungle going in his flat.  I send him a pic of what should have been the plant he got.  Then we start laughing because it was truly bizarre.  Here I am, making pancakes throwing up my hands in the air just not sure what to say, and there he is, trying to find room for the plants and making comments like "how do I water these?" and "they're probably die soon anyway."  I tease him that I'm really just starting a second garden and it's in his flat (I may have gotten a little carried away gardening this year.  That's another blog post entirely).  He gets the plants situated and I get my pancakes done

Tim, because he is wise and pretty awesome, takes a moment to wonder if these particular plant selections were the universe's way of telling him/us something.  So he looks up the meaning of the plants.  "White orchids are deemed more special than red roses on there" he messages me (his phone needed to charge so we had to switch to chatting).  Then he sends me "In general the hydrangea stands for friendship, devotion, and understanding."

Was the universe telling us something?  Was this a message from the kids that we could never have but we believe are around us? 

Perhaps.

Probably.

At some point I tell him all giggily girly that well, we know what our wedding flowers will be if we're going to have flowers! 

Later on in the day, he thanks me again for the flowers.  I tell him that I'm glad they made the weekend better for both of us, and that our kids would have been/are happy.  Tim agrees.

It truly made this melancholy weekend much brighter.  We shared laughter and jokes along with deep breaths and silent tears.  We remembered our kids in both solace and in smile.   A holiday that was troubling to us both each in our different ways of grieving and coping brought us together to share love and understanding, which is what makes our relationship beautiful and amazing.  It's very hard to think that the kids weren't somehow behind this all.

Our beautiful children.  We could picture them: a boy who is complaining that mom is too obsessed with plants and a girl who thinks they're all pretty and can she help water them.

Footnote:  I called 1800flowers tonight, and tell them what happened.  Cool and calm, it's all good, but thought they should know.  They said they could either resend the right plant to Tim or give me some kind of a credit.  Like Tim would need another plant in his jungle so I said the credit would be fine.  Mixups happen.  I didn't yell or anything, it was just a "this happened, what's next" type of call.  If I ever send plants to Tim in the future I will use them again because of their customer service. 

Saturday, June 15, 2013

Father's Day Part One

This Sunday is Father's Day.

Tim told me a bit ago that he was having trouble with it this year.  Not that last year didn't suck, but this one was weighing heavy on his mind and his heart.  He asked me if it would be alright if he did a "Technical Difficulties" show on his thoughts on Father's Day.  I said of course it was.  He shared with me his notes that he wrote up before the show, and it moved me to almost tears (I made the mistake of reading it out front with Alex and I didn't fancy crying in front of the whole neighborhood).  That was Thursday night.  This is what I wrote him on Couple:  "I don't know how to describe what you wrote...Its [sic] perfect.  I can feel the love you have for me, Alex, [and the kids we couldn't have] just radiate from those typed words."

Friday morning (his afternoon) I listened to his show and this time I could hear him as he expressed himself.  It was very hard for me to listen to, but I'm glad I did.  It was a very honest, very touching show.

Below is the widget to listen to the show:



Here are his notes if you are unable to listen to the show:

Song: Robert Miles - Children

Good afternoon, this is Technical Difficulties on Resonance 104.4 FM, thank you for tuning in.

The song you just heard was Children by the Italian producer Robert Miles written as a response to photographs of child war victims his father had brought home from a humanitarian mission in the former Yugoslavia and also more immediately, created to end DJ sets in a calm way, as a means of reducing the spiraling number of car accident deaths from club goers in the country in the mid 1990s, who drove across the country to find music. (Bellos, Alex; Hooper, John (June 2, 1996), "Italy's ravers dance down road to death", The Observer via Wikipedia) - Unfortunately, this clip is now archived behind a paywall.

This Sunday is Father’s Day and I face the vivid reminder that myself and Sonja cannot have biological children. That I will not be a father.

So this show is from the soul of my reproductive story, shining a light on my own pain in an effort to illuminate the experience for you all, and hopefully to bring solace to others who have lost parenthood and lost children.

I hope by telling my story, I am illuminating a broader section of the experience of infertility, particularly through the eyes of what I might describe as the “passively infertile” partner to someone.
My relationship with infertility is an unusual one to illuminate, I think.
As far as I know, having never been tested, I remain biologically fertile.
And yet, I had never really thought of or wanted to have children.
Then I committed to life with Sonja, who had a hysterectomy and have since felt the competing and bewildering contrast of a deeply fulfilling relationship which simultaneously triggers a loss of my potential to be a father to a child.
Legally and societally, according to the World Health Organisation, I remain fertile until myself and Sonja have wasted two years trying to have a baby.
After which point I will miraculously be able to classify myself as infertile for the purposes of disability law and reasonable adjustment.
The world is full of children.  
In fact, directly behind the main studio here is a school where the sounds of children in the playground are often noticeable.  As I said before, I never particularly liked children and my attitude to their frequent presence has probably hardened since I learned that I couldn’t be a father myself.
It remains to be seen how I will cope with nephews, nieces and the children of my cousins, one of whom was recently born.
Judging by my reaction to the random children, I suspect I will just feel deeply upset.
Suggestions that infertility doesn’t mean no children belittles the constant reminder that adopted children would be of my inability to have my own children,reinforced by my experience of random children in this part of my life.
So after a period of hoping that we would take that route, I am settled in this childless route which Sonja had already expressed a preference for.
I was a donor to a children’s charity until this year, when I just decided to end my association with Everychild, simply because the endless mentions of children in trouble were distressing to receive, more distressing than they had been and probably more than it would be for fertile people.
The children we could have had, and who we have talked about on this show before, are present in the bracelet I wear which adorns the Light Chronicles social media.
And they are frequently by my side in the spiritual dimension.
Tears don’t come easily with this least tangible of losses.
But when they come, they are often hard to stop.
So the bracelet brings this spiritual bond into the physical domain.
Whilst the roots of our infertility go back further in time than my relationship with Sonja, the ongoing effects of our infertility on our relationship make the statement “We are infertile” eminently defendable, whatever the WHO say.  
Nonetheless, Sonja has had longer to develop coping strategies. And I am still learning what mine are, in life in general and in therapy.
I think it is self-explanatory that this show is part of that process.
A recent study published in the journal Human Reproduction (available here) found:
Men and women cope with infertility in many ways
“In the current study, four primary types of coping strategies were examined:
  • active-avoidance strategies (e.g. avoiding pregnant women or children),
  • active-confronting strategies (e.g. showing feelings, ask others for advice),
  • passive-avoidance strategies (e.g. hoping for a miracle)
  • and meaning-based strategies (e.g. growing as a person in a good way; finding other goals in life)
A partner’s use of active-avoidance coping was related to the increased personal, marital and social distress for men and women.
A woman’s use of active-confronting coping was related to increased male marital distress.
And a partner’s use of meaning-based coping was associated with decreased marital distress in men and increased social distress in women.”
I mean no disrespect to my parents when I say their presence and support is no consolation to the challenge of creating the unconventional family which is part of my coping strategy.
The family unit which is myself, Sonja and our cat, the kitty girl Alex.
Which makes me a Cat Dad,  
And a father of lost potential,
of the children we cannot have,
and their lingering presence in my life,
present in spirit if not in body.  
The loss of physical fatherhood highlights my tendencies towards paternal behaviour of sorts towards many.  
Much more is brought to the surface of thought about such tendencies than had been before we were infertile.
There is a thin line between accepting that things happen because they happen, and eventually work out, and the anger towards people who attempt consolation by suggesting that this is all God’s plan.
For the record, I am an agnostic anarchist, so I’ll let that speak for itself.
Even as we will never have children, I have a strong emotional link to neo and perinatal death, having been one of the few survivors in the early 1980s neonatal intensive care unit where I was nursed back to health from premature birth.
The rates of survival remain too low and I carry those children I left behind as I do the children we couldn’t have.
I guess you could say that this adult version of me very much looks upon children of neonatal brain injury as a father does to his children.
As, I hope, a role model of what can be achieved when you survive this most precarious of beginnings to a life.
There are other types of fatherhood.
The lack of a grave,
of a public ceremony of mourning,
of a universal understanding of the loss,
does not diminish grief,
that most private and personal of emotions
and a challenge to someone such as myself so open about his health and particularly his disability.
For my partner Sonja K Peterson, this is Tim Abbott. Wear your scars with pride and remember, we all have Technical Difficulties.

I will finish this afternoon with one of Sonja’s favourite Tom Petty songs.

When she originally shared it with me, the intent was to reflect on my own situation, and then I listened to the lyrics and I feel they could mark a conversation between a parent and a lost child.

Good afternoon to you all, to the parents and to the children - yours and mine - who cannot be. This Sunday, think also of the men who cannot be Fathers.

“You belong somewhere you feel free”. This is Wildflowers by Tom Petty.