Embody Mental Health

Posts Tagged ‘endometriosis’

Expect the unexpected. 

 

I had an entirely different post planned for today and then I found myself in my new doctor’s office this afternoon and all that changed.  I guess I should have learned this far into the living process that we can never assume, never predict, always just be prepared (like a good boy scout). 

 

It is always difficult to find a specialist for a chronic illness that does not have its own day or pin or charity of note.  So I held my breath as I waited to meet my new endometriosis specialist especially as I was at a particularly frustrated point, having spent the last week in fairly severe pain (or, medically speaking, about a 6 on a pain scale).  I had a constellation of thoughts sparking and shooting through my brain.  I was not sure what my next step was but I was fairly certain decisions would have to be made. 

 

I had my exam, lets pass over the details, and then I met with the doctor in his office to discuss things in a fully clothed state.  I found this doctor to be a refreshing anomaly already.  When dealing with a male doctor dealing with female issues I tend to walk with trepidation, assessing for a complete lack of empathy or bedside manner, but he had a jovial quality and a softness with a side of humor.  I already liked him.  Then I walked into the office for the “serious business” and sat down in the typical dark wood  office chair.  He began talking to me seriously, frankly, and in a way that was both frighteningly and refreshingly honest. 

 

“Endometriosis is worse than cancer, really.  It would be preferable to have cancer.  You treat it and it’s gone.  With endometriosis there is no cure it just continues to grow and all we can do is manage it long enough so that you have the time you need to have children, if you want them.” 

 

The follow-up inference of that statement is, “Before it all disintegrates in a painful sequence of  internal explosions till, like a building with detinators in the foundation, the entire structure collapses into dust”. (My paraphrasing of the inference later discussed at length with the doctor)

 

I sighed, maybe even audibly.  Finally, someone just said it how it was, and understood what it meant to have and live with this condition.  I needed a qualified person to validate my own hypotheses I had been mulling over this week. After not even a year following my first laparoscopy procedure my pain was returning to the same pinnacle point and I knew it was not a sign of internal wellness. 

 

After finding out in my first surgical procedure that the past 15 years of being told “it’s just your normal cycle, you get bad cramps is all,” was completely lazy diagnostics, I got the official stamp of “Endometriosis, Stage IV“.  There are four stages of the illness and four is the most severe and pervasive.  I knew even a year ago that, that was not a prediction of good to come but I had hoped for at least a couple of years between surgeries.  Now, sitting in that office, hearing the realities I knew I needed to know what was going on in there and there might be more decisions beyond just surgical maneuvers that would follow the “knowing”. 

 

 So, here I sit at home with a bit of medicine meant to mollify the pain beginning to make its way into my system system, along with the bread I use so that I don’t vomit from said medication.  I am preparing for my second laparoscopic surgery on Friday and pondering the information confirmed by my new doctor/surgeon.  I knew it would come to this but having the internal conversation that follows “knowing” is really frightening.

 

How badly do I want to physically have children? How soon am I willing to do that to keep it a possibility? And how do I discern both these things with a clear head and not rash sentimentality? 

 

The first question is: How long do I have before my internals liquify to use my inner pieces to procreate?  The follow-up question is: How soon am I willing to begin trying to have children to prevent losing the chance altogether? 

 

People sometimes ask the theoretical question, if you could know the day you might die would you want to know?  Is it better to know a fate or not.  If you can predict your potential for life, or to create life, would you really want to know?  I find the knowing that I have limited time is like a huge weight pressing on my airway, making it impossible to breathe let alone think clearly on the matter.  At least tonight it feels that way, full of bread, medication, and pulsing pain surging through my abdomen, back, and legs. 

 

Babies.  What are my thoughts on babies?  I am definitely of two minds.  They are messy, and poopy, and needy, and wake you up all the time, and need, and want, and must be constantly watched, and even if you do all the best for them there is no guarantee they will be ok.  They are so much responsibility, but conversely, they are so much love.  They smile, and laugh, and play, and love life in a way that could, potentially, remind you of how much there is to love in life. 

 

Why must I decide now though?  Part of this decision process makes me uncomfortable as an adoptee in a family that is mostly not genetically related.  There is no reason why my decisions, or my body, needs to prohibit babies just because it inhibits procreation.  And is making a decision with such importance about procreation diminishing to all the other ways to have and love a baby?  I never wanted to be a pained and yearning woman amid fertility treatment where it was biological or nothing, but conversely I feel a pang at the idea that I may never have the option for the biological even if I were to choose the non-genetic version of a family regardless. 

 

So, I have surgery the day after tomorrow and my husband is rushing his return to Florida to be here Saturday morning.  I have to get through one night of post-surgery pain alone.  That I can do.  The rest of it, perhaps, I will also leave up to my post-operative brain to coordinate.  After I find out what the present state of carnage is in my potentially womb-less womb. 

 

“True stability results when presumed order and presumed disorder are balanced. A truly stable system expects the unexpected, is prepared to be disrupted, waits to be transformed.”

Tom Robbins

Caution Tape by Picture Perfect Pose at flickr

 

I have learned a lot about lizards these past few weeks.  As of this morning I can add to my credentials “One who knows what dead lizards look like in my entryway”.  Tonight I can certify that I know what amphibious mortis (please forgive my rudimentary latin translation of dead lizard) looks like after a day on an entryway floor.   They deflate…rather fast.

 

Now, you may be wondering why would I wait about 12 hours to remove said lizardus corpus (ok now I am just making my own version of latin up).  There is a two prong approach to my reasoning: 1) I was not certain that being upside down with legs in the air was a definitive diagnosis of amphibian death so I wanted to give it some time to see.  2) 7:00 am is just too early in the morning for me to brave the task of scooping up and disposing of lizard remains.

 

I believe the dead lizard, ”John Gecko Doe” is The Lizard Formerly Known As “Shower Lizard” .  He was meandering nearly lifeless around the bathroom floor at abnormally slow lizard speeds the last couple of days following the day I thought I had drowned him with my shampoo toxins.  Apparently I had caused him a much more sinister and drawn out death sentence.  I feel awful and I gave him a tiny lizard prayer as I scooped him up, flattened and scaly, and placed him into my garbage can.  Thank goodness for trash Wednesdays. 

 

But my short lived friend once fondly called ”Shower Lizard” has helped me to create my own parallel from his death to my life. 

 

 I was in a little bit of a funk yesterday.  My pain had reached an all time high by sunset to the point where I felt the familiar sensation of shooting sparks of fire rippling down from my abdomen into my thighs–if you had not guessed, this is the bad end of the endometriosis pain spectrum. 

 

On top of that I had  begun work at my new office, having completed a week of prerequisite orientation off-site, and felt the sinking feeling of “First Day of School for the New Kid” with a sense of just having been thrust from my place as well-respected innovator to unknown, anonymous, new person with no history of much consequence.  Whether this perception was just my New Kid mindset or anything besides is irrelevant it was simply that feeling of being set off kilter and humbled by the death of one life and the start of another. 

 

Rebirth–professionally speaking. 

 

Death precedes rebirth.  Nature does it.  Faith and religions talk about it.  Our human lives exhibit it.  We are in constant cycles of renewal whether by catalysts we create or those we have inflicted on us.  We are made to adapt and change along with those things in our life that require it: stagnation can happen but it is in our own best interest to constantly stretch ourselves. 

 

My move, my new job, my new locale were all things I put into my life by choice but feeling the growing pains of that change in action is a learning experience which brings me new surprises at every step. 

 

I did not know that I would have such a moment of mourning at letting go of my old professional sphere and the comfort of the known I had found in it.  I did not know that I would be separated from my husband for this long and that the distance would bring with it unknown pains and unanticipated appreciation at a deeper and deeper level for what my husband means in my life and in my heart. 

 

Change brings with it struggles with the unknown, with our own insecurities, and the growing pains that bring us out on the other side changed but evolved in some way.  The death is always rebirth of some kind and fear can becoming invigorating awareness, although always with some struggles along the way.

 

I am appreciative of the distance and time apart from my husband (on my better days) because it has allowed me the blessing of knowing my love for him in a far more dimensional way than I had ever known before.  I am thankful for the new opportunities in a new place, a new job, and the new adventures that might be on the horizon as a result.  I, as all of us do, fear the death of the old but know that what is being born is not just a new life but valuable lessons about myself along the way. 

 

I thank my fond friend of only a few short weeks “Shower Lizard” for reminding me of the cycle of life.  I hope he finds all the shower drains his little heart could ever desire wherever he has gone to.  And I really hope he is the last deflated amphibious mortis that I have to scoop for a while.  It is a disheartening side job.

 

Life is change.   Growth is optional.  Choose wisely. 

AUTHOR UNKNOWN

 

Boken by MSIChicago on flickr

                                                     {1}Starting Life by jimdeane on flickr

 

Bathtubs, Holmfirthby trickyTM at flickr

 

One thing I dream for pretty consistently may seem an insinuated pleasure to some, a bathtub I can take a bath in; a big old, bubbles and whistles (well not literal whistles but you get the gist) bathtub that one can luxuriate and decompress in.  I often wonder what my life and perhaps my anxiety level might be with the addition of one of those–I have heard good things about such decadence.  Instead I have meandered through numerous years of rental living with one manner of unlivable bathing equipment after another.  And each time I think I have hit the bottom of the drain I am confronted with another even more extensive effrontery to human cleanliness. 

 

This time it is well water and lizards.  This is a new experience for me.  I have had plenty of tubs growing mold, potentially once sites of some kind of violent crime, or the tub that never was in my Manhattan adjacent apartment (ie Hoboken, NJ) where there was only enough space for a standing shower with toilet in the bathroom –see sink in the kitchen for further sanitation. 

 

But there is something about trickling well water that just doesn’t scream clean.  And even if it did the not-so-faint odor of rust that emits from the water itself and the washee following bathing in it leaves one with the feeling of needing to shower to wash away the shower.  I am more than ever thankful for very potent body lotions–which of course is additionally mosquito bait but between rustiness and bug bites my sensitive nasal cavities choose to offer me up to the tiny vampires of the south. 

 

Anyway, besides the fact of never feeling quite clean maybe I am thinking about this particular area of loss right now because it has been a particularly bad pain weekend.  I have cramping like mad and not at all sure why–besides faulty genetics and disorganized systems of reproduction.  Enemy thy name is Endometriosis.  And what I could use to deflect some of the enemy’s force might be a relaxing bath–or so I hypothesize as I bemoan not having the ability to find out. 

 

Endo as well as erratic Florida rain also inhibited my ability to take part in my first ocean view beach yoga class.  I am hoping that I can make up for that by taking one of the sunset classes this week at 6:00pm following work or try again next weekend…all depending on my pal Endo and what she has planned–we often conflict.  She’s always wanting to spend long days on bathroom floors, or in beds with heating pads on abdomens while I would rather do anything but those things.  She usually wins. 

 

Body as the enemy, and a woman.  Again I lead back into the multitude of issues related to internal or external trauma and the female elements of dueling within ourselves.  I would love a bath.  I would love a pain free regimen of care for my condition.  I would love to not have to go anywhere with backup pain medicine, just in case it gets too bad.  I would love a lot of things that are not within my grasp or within my power…like having my husband living with me in our home in Florida and going to sleep knowing that my whole family of two plus dogs was under the same roof. 

 

What I have learned in the brief period of time since the move to Florida with more clarity than ever before is that as much as we want to try to control the elements of our lives or our bodies sometimes it is just not possible and in those moments we just have to let things go.  “Let Go and Let God” is a constantly used mantra of AA programs but the overall sense of it is useful to all.  My friend Marisol over at Homefront Letters discussed the other day her own struggle within herself to want what isn’t possible and her method of giving it up to something greater than herself. 

 

Whatever we believe in and whatever spiritual path we follow sometimes it is necessary to let everything go: our pains, our wants, our control (which is often more just an illusion of our own imaginations than actual control).  We must let everything go and give it up to something bigger than us.  We can only carry so much and we really control so little.  Sometimes letting go is all we can do, otherwise we will drive ourselves mad trying to fix the unfixable or change what is not in our capacity to change. 

 

I am learning that with more clarity every day.  And sometimes the realization itself is a painful process of recognition.  Giving everything over to something that is not ourselves sometimes feels against our own instincts.  In truth it is more of a learned and acquired capacity but one that is much healthier for us in the long run.  To be able to let go of things that happen in our lives enough so that we are not ruled by them.  And also enough so that we can get enough distance and perspective that we can deal with the life issues that come up.  Again it is an acquired capacity and one that is not easy as I learn struggling with it daily. 

 

I will try to let go of the fury that wells in me when the cramps erupt and the frustration at my trickling well shower.  And I will continue to smile at my shower lizard when he pokes his head out of the drain…hoping desperately that I am not drowning him and apologizing profusely as I douse him with my shampoo run off.  He seems to take the whole experience far better than I am so far–but I guess it’s all a learning curve. 

 

Knowledge is learning something every day. Wisdom is letting go of something every day.

Zen Proverb

 

The Last Shower by winterofdiscontent on flickr