Thursday, September 10, 2015

Playing the what-if game

I'm not sure how it is that I let weeks go by without writing here.  Every time I sit down at the computer to write, I reread what I wrote the last time, just so I don't bore you all by repeating myself over and over again.  But when I do that, it makes me so aware of all that has happened in the time in between.  Here's a quick recap and then I will get into the nitty gritty of this post.

Since my last post:
  • all my colleagues went back to work...and the school still functions without me;
  • big kids started school and for the first time in their lives, I was able to take them to school the first day;
  • little one had two weeks at home as an only child by day, youngest by night;
  • big kid Back to School Night;
  • I had my swallow study (much more on this later in the post);
  • I finally got my sh** together and put together my calendar for the year;
  • dance studio released the new schedule and after a zillion or so text messages, worked out a schedule the girl is pleased with;
  • Bat Mitzvah planning kicked into high gear (yes, already, even though it is a year away) with the signing of vendor contracts;
  • missed a big family function because my doctor didn't think it was a good idea, but sent the girl with her grandparents and am thrilled with how close she is to her cousins;
  • swear the girl grew another foot;
  • I climbed in the way back machine and had a wonderful visit with a friend who has known me forever;
  • exhausted mother-in-law returned home after chasing the youngest around for two weeks (Thanks Emily!);
  • littlest finally went back to school (more on this too, I think!);
  • dance classes actually finally start and all is right in the girl's world;
  • I am back to being a stay-at-home, alone-in-the-house, keeping-myself-busy kind of mom.
That's the update from Lipson Land, now I can get down to the real business at hand.  In truth, I have been avoiding this post for almost a week.  I had to have a mini-meltdown and have a hard talk with myself before I could sit down to write this.  I realized that I sometimes delude myself into thinking one thing and then have a difficult time accepting the reality of a situation.  Maybe that's called coping, I don't know, but I do know that once I write it here, the reality is out there and I have to deal with it.   I'm probably building all this up to a great big mountain, when it is potentially just a molehill to be stepped over, but time will tell.

So here's what is going on.  Last Friday, I had my swallow study.  For those of you who don't know what it is (I certainly didn't!), you are really missing out on a good time. The swallow study was done to determine whether I am having any difficulty with swallowing and if so, what those difficulties might be.  It involved an x-ray tech, a radiologist, and a speech therapist who specializes in swallow issues.  Never had an x-ray with an audience before!  So first there was a chest x-ray and then they seated me sideways in front of the machine so they could do a video x-ray (who knew those even existed???) of me swallowing.  I started with straight up barium thinned with a little water.  Yum.  Swallowed small spoonfuls of that delightful concoction and then worked my way up to something even more appetizing.  Applesauce mixed with barium.  Yep, it really is as disgusting as it sounds.  Maybe more so.  I am so thankful that my taste buds are beginning to come back, but it seems a little twisted that they start to function just as I have to do this test!   There are more steps after that, but I didn't get there, as I had a hard time with the applesauce.  After the applesauce made me gag (really?  Who wouldn't?) the therapist put the brakes on.  She showed me the video of me swallowing which was really quite fascinating and even with my untrained eye, I could see where the problems were.

I do okay, not great, with water and other drinks of that consistency, but when I moved to the thickened applesauce, it was too much work to get my airway completely closed to avoid food going down the wrong pipe.  We have all done it, swallowed something the wrong way, which I suppose is fine once in a while, but the risk of having it happen all the time is not something to mess around with.  So basically what the therapist told me is that I am not ready to eat yet.  Well, not eat what I want.  I can start working up to real eating with soups (thank you triple-digit weather, your timing is perfect!) and puddings, thinned out mashed potatoes, ice cream, etc.  Not horrible, but not what I was wanting to hear.  Worse than that...I have to repeat the whole process in six weeks.  Barium for breakfast, not my idea of a good time.

I've taken a long time getting there, but here is where my mountain vs. molehill issue popped up.  In reality, I know exactly how hard it is for me to swallow things.  I just didn't want to admit it.  In my fantasy life, I was going to go to this swallow study appointment and just kill it.  I would come home and start whipping up meals for my family and actually sit down and eat with them at the table.  Eating would be easy and I could begin to put this whole ordeal behind me. 

The therapists words and prescription blew that whole fantasy out of the water and brought my reality crashing down on me.  I was not ready to eat anything.  When I first got home that afternoon, I tried to blow it off like it was no big deal.  I immediately got on Pinterest and started pinning new soup recipes, trying to decide which one to make first.  I looked up puddings and custards and mashed and whipped potatoes and sauces and gravies.  And then the elephant in the room filled it's trunk with water and gave me a good dousing.  I wasn't ready to leave all this behind, I was still stuck smack dab in the middle.  I have this picture in my head of me in a giant maze and I've been wandering through it for months, just trying to find the exit.  I thought when I turned this corner, the exit would be right in front of me, but instead I hit another brick wall and once again, I have to turn back around.   By the time we got the kids in bed that night, I was a mess. 

Just like that, the what-ifs started.  I am really, really good at the what-if game.  What if I never get my swallow back?  What if I can never eat again?  What if the swelling around my vocal cords is permanent, what if the trach is permanent?  What if I can't go back to the classroom, back to teaching?  What if I never, ever, ever get my old life back?   I got in the shower and just sobbed.  And then I got mad.  And then I sobbed some more because I felt sorry for myself.  Why me?  When do I get a break?  When is something going to go right for me?  Pity party, table for one, no reservations required.  All of this because of one day, one test, not even the big test, that one is coming later in September.  Once I let it all out, I was feeling a little bit better.  None of those what-ifs had been answered, but I had had a good cry and things are always better after a good cry! 

Nothing has changed since last week, except that I know I just have to keep moving forward.  Some of those what-ifs might come true.  Most, if not all, will not.  I really debated writing about all of this, about all of my fears, my what-ifs.  So many of you have commented to me that I have a great attitude, that I am so positive (thank you for the compliments!) and inspiring (again, thank you!) but I need everyone to know about the struggle to get there.  People say to me all the time, "I don't know how you do it."  Frankly, some days I don't.  I have my ups and downs, my turn at the pity party.  I don't think I would be human if I didn't.  I have days that I really don't get out of bed, but then I have days where I can't sit still.  Days where I just want to hide from the world.  I get frustrated at my situation, at my body, at life in general.  I am so impatient (oh...did I mention that the speech therapist told me I just needed to be patient?  Just be patient...now my three least favorite words in the English language!) I just want to be done.  But then, I look around and I see, truly, how far I really have come in a relatively short amount of time.  I push the what-ifs to the side.  They are never gone, never really far from view, but for today at least, they aren't sitting in the middle of the road, blocking my way. 

While I was writing this, the mail came, the exterminator came to the door, dogs needed to be put away.  Texts came and were replied to, urgent emails attended to, my to-do list got longer.  Life keeps moving, and I have a choice.  I can lay in my bed and let it pass me by, or I can get back out there and be a part of it again.  What-ifs be damned...I've got things to do!

By the way, this is what came in the mail today:

Okay...there is obviously no picture here, despite my repeated efforts to place one right in this very spot.  If there were no technical difficulties, you would be looking at a stunning picture of the awesome rhinestones that arrived by carrier pigeon.  Sparkles, sparkles, sparkles!  I have craft projects coming out my ears...yay!  Maybe one day I will figure out my technical issues and be able to add more pictures...

Until then, love and sparkles to you all,
Gayle

5 comments:

Svandoren said...

Gayle, I love that you write with such great honesty and feelings. It is only natural that your feelings are all over the board. Everyone has bad days, but you are handling it with such grace. Go ahead and cry, you deserve to let you true self out. I am praying that your next swallow test will be better. I am looking forward to going out to lunch with you soon. If you ever need a shoulder to cry on, just call. I'll be there.

Sandi

IWByte said...

Loving your strength, trach and all! Thanks for keeping us in the loop. Looking forward to seeing your family next week. Hope you can stream in if we don't see you in person. So amazed and impressed, just keep going!

Samantha Barber said...

I love the way you write. I giggled a little at the thought of an elephant dousing you. I too am well versed in the what if game. So hard to shut a voice up when it doesn't have a mouth. And I couldn't agree more about a good cry. Let it out my friend. No one deserves it more.
Ps Can't wait to be getting the thumbs up from you that TK is ready for me to unlock the gate at the end of the day ��

Samantha Barber said...

I love the way you write. I giggled a little at the thought of an elephant dousing you. I too am well versed in the what if game. So hard to shut a voice up when it doesn't have a mouth. And I couldn't agree more about a good cry. Let it out my friend. No one deserves it more.
Ps Can't wait to be getting the thumbs up from you that TK is ready for me to unlock the gate at the end of the day ��

Gayle said...

Thanks everyone. For some reason I am having trouble replying to individual comments. Dang technology! I appreciate all your kind words!