5K Insane Inflatables

People would talk about completing 5Ks and I would think "eh, what's the big deal. It's seems like a waste of time and money."  Why did people do them? What was the intrigue? I didn't really get it. 

I kept seeing an ad for a 5k near us with inflatables.  Eight inflatables spread out over 3+ miles   Now that sounds intriguing   

As soon as I was given the green light from my Gynecologist after my hysterectomy in December, I walked longer and ran   Then the end of January, I completed my first 5K with my good friend Meg.   We had a blast climbing over inflatables and maneuvering our way through the course. 

It was much more challenging than I anticipating but it was exciting to complete it.   Meg and I were also picked to start our group and and that was fun to stand in front of them. 😀 

If you're given the opportunity to complete 5k, I recommend it. They are a fun challenge. I will definitely add more medals and tshirts to my collection in the future   I can't have one little medal in my collection 

Influence

When it is my time to pass away, I hope I've made an influence on someone's life. I hope when they think about me, there is a soft spot for me and a bit of happiness. I hope i have given some moments of laughter. I hope i filled their time with joy.  

I hope, in return, my friends and family, th know how important they are to me even when I was rushed with daily life.  Even when domestic life and stressors wore me ou.  Or my chronic pain made me less than I should be, you were a driving force of happiness. I forced a smile and fought through the pain for you.  Thank you for loving me, despite my flaws.  Life is a great gift. Challenge it.  Enjoy it   Embrace it.  For one day, it will be gone. 

Omaha, Here I Come

I'm flying to see the women who held me together during the fundamental years of child rearing.  Those tedious toddler years when daily struggles could be the end of a mother.  Or the excitement of a child's first words and knowing that these women were just as thrilled for me as I was for them when their their child finally used that damn cup and not a bottle. 

If you have a child, you can relate on some level.  These women held me together.  If you're read my blog you heard of them.  They were there for me when we thought my husband had lung cancer, when Gabriel was diagnosed with autism, when Lane was in the NICU and so much more.   They held me together through the years.  When I moved away, I missed them with all of my being. (I haven't missed the snow and ice, let's not go overboard here, people... They need to get sensible and move to Florida) 

So I am looking out the plane on my way to Omaha to see my "sisters" and I am thinking in an not so eloquent way -- fuck.   What if this is it?!  How morbid.  I guess every day could be it but in exactly one month I will place myself under the skillful hands of my surgeon knowing I will have a 60% of not making it.  I'm staring out the window at the clouds and what if this is my last flight?  

I feel so cheated yet so blessed all at the same time.  What a fantastic life I have had   Not many people get to say that.  I've been surrounded by the most loyal and loving friends   They are gorgeous human beings and I am thrilled to be able to spend time with a fraction of the pieces of my Iowa world this weekend. If, by chance, this is my last weekend with them I am so lucky that I get to spend it happy and doing things I love. 

Then i will go back to Florida and spend the next month with people i adore and love them too. I wish i had time to travel to everyone important to me   I'm lucky I have this time.  Not everyone does and not everyone has the 40% in their favor   I'm going to fight hard to keep my body strong and eat some chocolate along the way.  

Piggies

Gabriel has wanted guinea pigs for a long time.  We finally relented for Christmas and Santa left a letter for all three kids along with a cage and the needed acessories.  The kids were so excited to pick out new family members 

The day after Christmas we went to the pet store and picked out two baby piggies.  As reluctant as I was to get two more pets and have the responsibility, I have to admit, they have grown on me quickly.  They are pretty darn cute.  

Even their little noises are endearing at this point.   It will be fun to get to know their personalities in the coming weeks.   So meet Pica Puppy (the brown one) and Mike Henry (the black and white one)....

Surgery number 8

Every time I sit down to write about a surgery I have coming up, words fail to adequately describe how I am feeling.  I don't want to come across as the needy, whiny person or the friend who is seeking attention either   Yet in some ways I do have some rare moments when I want to talk about my chronic pain and my fear of surgery.  I want to cry and be held.  Other times I don't want to talk about it at all and I want to pretend like I don't have a pseudo-tumor. 

Here it is --- surgery number 8.  Decompression surgery  

My brain surgery will be performed by the same neurosurgeon who performed Alex's surgery.  His surgery was flawless and gives me much hope.  My surgeon has a ton of experience with Chiari decompression as well. 

My fears lie in the fact that it is MY head. Brain surgery is much harder to recover from as an adult and I have many added complications and risk factors.  I've also witnessed my now eleven year old fight for his life when he battled bacterial meningitis after the same surgery developed a cerebrospinal fluid leak  

My complications have been added due to having IIH (idiopathic intracranial hypertension),   The mix of the two conditions has made me a complex zebra in the medical world as stated by three neurologists and a neurosurgeon. 

I have cerebrospinal fluid pooling and my dura is already thinning.  I have a liklihood of losing my eye sight and having my dura leak on its own.  

It is unknown what symptoms will be alleviated, if any after surgery.  Perhaps I will feel great!  Maybe nothing will feel better or just a few symptoms. There is a greater chance than other surgeries that I won't wake up at all or that I won't have my eye sight.  

Today I got the courage, after months of putting it off, to call and schedule the surgery.  I asked for a date in March.  I spoke to the nurse and we discussed the recovery time line and she wanted to make sure I understood the risks and possible complications since I'm one of their zebras. (Why oh why?!)   After we went through the risks, I said, ok Julie, this is the moment when I swear and cry and she said, "yes I know and it's ok."   I adore that woman. 

The recovery time line is brutal -- 3-5 days in icu; 3-6 weeks of doing NOTHING at home. If I've been a good patient and I haven't developed a leak, at six weeks I'll be able to walk again.  3 months, running will be allowed.  6 months - it's possible to see symptoms disappearing but it isn't until 12 months that it's known if the surgery worked.  12 months --  crap!!!   

It isn't the end of the world but I'm scared. It's my head.  He opens my skull and touches my brain!  He even removes a teeny tiny portion   What if that's the portion that makes up the charismatic part of me?!  

Until March, I'll keep on my brave face to the world. Unless you're with me in that unfortunate, crumbling moment, and you see the tears, we will get past it quickly because  I know I'm not a cute crier and I want to continue to love life with all I have right now    

Jessica's Head

I have failed miserably to update my blog.  Life marches on and I couldn't bear to share my soul on here.  I've been given two difficult diagnoses over the past few months and I've taken time to digest the news.  

While the diagnosis isn't terminal, it is serious and with considerable risk.  Rather than curl up in a ball and cry all day, I'm challenging life and savoring all it has to offer.  I'm loving deeper than I ever have, I see colors richer, the world feels more intense. I try to give my time more freely to those I care about because  I realize my time is a precious gift.  

Today the color green has captivated me. The different shades on trees is mesmerizing even as I drive down the highway or sit waiting in a parking lot.  On just one tree, there are numerous shades of one color of green.  It's amazing.  

Yesterday I stood at the beach.  I watched the pelicans float lazily in the sky.  I felt the breeze against my face as the waves roared and crashed into the sandy beach.  The sandpipers scurried across the sand looking for their lunch. 

I study my children's faces and memorize every minute detail.  I watch the way they move and run.  I savor their laughter and enjoy their antics throughout the day.  

I'm also challenging life again. I more active by walking with friends regularly.  I volunteer when time allows.  I follow through with doctors appointments and physical therapy.  I find time to climb rock walls, go zip lining, and go on other adrenaline raising adventures. 

I was diagnosed with Chiari months ago and while that diagnosis didn't settle well, I was prepared for it given the boys surgeries and everything we've gone through with them.  I was not prepared to hear that I have IIH in addition to Chiari. 

IIH is idiopathic ibtercranial hypertension. It was known as psuedotumor cerebri, meaning false brain tumor.  I think I read 1:100,000 people are diagnosed with IIH and to have both is even less common.  I am a zebra in the medical world.  

My dura is thin and there is pooling of my cerebrospinal fluid. I'm at risk of going blind and developing hydrocephalus, thus requiring a shunt.  My dura could break on its own and cause a spontaneous leak of cerebrospinal fluid.  This puts me at risk for developing bacterial meningitis which carries its own risk factors.  

There are few treatment options for either IIH or Chiari.  IIH can be treated with spinal taps and medication.  Medication hasn't been recommended for me at this point because they don't know what my pressure is and a spinal tap could make my Chiari worse, meaning it could cause permanent damage.  

Decompression surgery has been recommended where the cerebral tonsil (16 mm herniation) and top vertebral would be removed.  A greater space would be created by opening my dura and putting a patch made of my own skin in its place. 

The outcome of surgery can be anywhere from a typical good outcome to fatality.  I'm at higher risk for a leak which puts me at higher risk for bacterial meningitis.  I'm also at high risk for blindness.  I can either take the chance at feeling better after surgey or continue down this path of chronic pain which also means I'm still at risk for a leak, hydrocephalus, and blindness.  Then there's the risk of fatality.  

It's quite the precarious situation   It wasn't easy to hear the neurosurgery say, "Jessica, you're an interesting case and in the neuro world, that's never a good thing to hear." "Shall we dive right in since you're already familiar with Chiari?" I gulped, bit my lip so I didn't cry, and listened as he explained the above to me.   Time has passed and I'm still digesting the information some days.  Most days I'm at peace because I can't change what is happening.  Other days I'm angry at the world and perhaps one day a month, I want to cry and feel the hot tears fall on my shirt because it proves I am still alive.  And then I get up and find a new adventure before I have to face a risky surgery. 

Scheduled Surgery

I've experienced six surgeries in my life.  Three c-sections, a tubal ligation, appendectomy, and a cholecystectomy completes my list of surgeries. All of these surgeries were performed on an emergency basis.  

As my calendar turns from September to October, the reality of a scheduled surgery smacks me in the face every time I flip the page. If I want to schedule a dinner, an appointment, or an outing with a friend, the reality of surgery and recovery is looming on October 23rd.  

A hysterectomy isn't a hesitation for me.  I've dealt with problems for years and it is a logical option and a choice at this time. I've been in pain for years and it's time for the surgery.   Full recovery should take  six weeks at most, driving privileges after two weeks.

What strikes me harder is that just beyond a hysterectomy is my brain surgery.  My neurosurgeon wants me to have surgery by March.  It seemed far away when he first mentioned March.   However,  as I stare at my calendar, I realize I will be recovered by December.  Then I will deal with the holidays and then in full swing with life through January and February, and March will be here before I know it. 

My head will have a massive zipper scar down the back in less than six months and it doesn't rest well with me.  My anxiety level is high, perhaps higher than when I faced this with both my sons  brain surgeries. 

Instead, I focus on accomplishing things I have wanted to do for a while.  I conquered my fear of heights by climbing a rock wall.  

Even though I am crossing off a bucket list, I also enjoy the little things in life lately. I tend to memorize my children's faces  and listen to their little voices.  I stare at the colors of the sky and notice the leaves on the trees.  The warmth of the sun on my face is intoxicating.  It really is a wonderful life.