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Thursday, January 11, 2018

Ohio Part 1

I found a renowned neurosurgeon down in Ohio. I'm trying not to get my hopes up but I admit I am. That is not a good thing. The worst thing that comes from hope in this situation is crushing disappointment, again. The best is more treatment and an expectation that it will work. When I say crushing disappointment I mean that literally.  It's been a total of 5 years of treatment, pain, prayer, help, judgement, surgeries, complications, infections, more meds... you get what I'm saying.

Don't misunderstand and I think it's easy to misunderstand. When someone is chronically ill it's easy to read those words and come to the conclusion that person is trying to gain sympathy or they are wallowing in self pity. That couldn't be farther from the truth.  It's our reality - it's my reality.

I've never experienced anything like I have these past 11 months.  To say I've learned a thing about self-care is an understatement.

I have rediscovered old music, reading & audiobooks. I’m redesigning my bedroom, working through my pain with meditation and pretty much overdosing on Netflix series.  It's all about distraction when the pain comes. When it comes now it's fast and furious. It can come with a layer of numbness on my cheek which feel bizarre. Underneath is an electrical storm (of pain level 8-10) zaps of pain that come one after another after another. These last for a few hours to a few days without any pause. That's why I'm hopeful for another neurosurgery. 

This surgeon does a procedure where he implants a device in the base of the brain that senses pain coming on and stops it before it continues throughout the nervous system. Many brain tumor patients have this surgery which I may qualify for but I don't know how effective it would be on my trigeminal neuralgia. Another possibility is another Microvascular Decompression. I've had this neurosurgery on both sides of my brain already.  Sometimes, doctors will do the surgery twice. I had a terrible experience after my last MVD on my left side and I remember telling Jacob, "I will never let anyone ever touch my skull again, ever!" Here I am. Determined for this new surgeon to perform this procedure once again. Desperate people do desperate things but I won't regret it.

I'm in my hotel room in Ohio right now. I had a few hours in a fun pub with some great food and girlie cocktails. It felt... normal. I didn't feel like a patient. I didn't feel sick on the surface. I always hurt, right? Especially today. I had to take percoset today but I truly had invisible diseases. I got "gussied up" as my Grandma used to call it and went out. I hoped people would see me as someone who was like them.

I try not to think of myself before my diagnosis. How I was. It just doesn't help me.  I have enough judgement in my life that I don't need my own voice adding to it. I'm working so hard on being gentle with myself, staying in the present and honoring my body. It's clichรฉ but none of us know what life will throw at us.

I remember when the boys were little and were hospitalized in ICU every year until they were 7 years old. I felt so scared for their little lives. They were critically ill on more than one occasion. Jacob came close to death at 4 months old. I made a decision early on: I could either choose to be fearful that they could die an early death or I could enjoy their lives each and every day, accepting I have no control over anything. I had to let that fear go. It was casting a cloud over everything.  I wasn’t able to truly let that fear disappear - with chronically sick children that’s how it works and boy have they been sick - but it doesn’t have control of me. It doesn’t create anxiety in me like it used to.

Baby steps. Right?

Thursday, September 28, 2017

Writing, reflection, renewing

I'm writing. Finally. I'm writing the book I always was told I should write; the book I have wanted to write since I was 7 years old. Even on days where my pain is not cooperating I find even a few moments to put pen to paper (yes, I'm writing this long hand) and I write. If you stop, you get out of the habit. You have to do it every single day. Even if it's not on my book, I write about something. People often ask what the story is about and I hesitate to tell them. Just like I hesitate here. Writing, for me, has brought me to this place of reliving some of my greatest joys. My deepest love. Also, some of my deepest pain and I stay there for days because I'm not finished with what I have to say. I'm still wrestling with the characters. Their interaction. What needs to be worked out or experienced.  It's not something you can "turn off". I dig deep in my own stuff to relate that on paper so it will be real to the reader.

Even if that reader is only me I want it to be real. To make sense.

I've been writing since I was a kid: journaling faithfully since 1st grade. Short stories since 2nd grade. I wrote a dreadful play in 4th grade and some neighborhood kids and I acted it out in my garage for my Mom one summer. It was so bad but I loved writing it.

My mom used to buy those journals with the gold filled ends that sealed the pages together. It also had a tiny piece of leather and a cheap lock to scare off any would be peeker into your most deepest hearts desire. Whatever that could be for a grade school girl. My older sister was notorious for blatantly busting that lock wide open and revealing my secrets inside. Although she'd get punished I knew I had to be crafty in hiding my thoughts.

I started doing it in plain sight.

I would find an old school spiral bound notebook and make journal entries in the middle pages, tucked safely inside. No one was the wiser and it worked for years.

A few months back I was cleaning out a memorabilia box. In it I found a 7th grade science lab notebook. In it we're journal entries woven throughout. A paragraph here; two there. It was subtle. Truly, there was something quite powerful that a child figured this out. The content became extremely revealing, vulnerable, honest and sometimes silly. I talked about my crushes, friendships, my constant, soul crushing anxiety. My fear of my mother's alcoholism. My sister's drug abuse and having to be the one piece of pride to prove to my parents they did something right with their kids.

I'm back in that place again. Trying to keep boundaries around my head and heart but it's difficult. Those wounds never go away. You make room for the pain and live life to the best of your ability.
I try to cut myself slack although to be honest I'm not good at it. I'm harsh on myself. My inner dialogue is downright brutal at times. That is a work in progress, too.

I've written research articles and that is my go to place. I'm comfortable there. I find it relaxing. Even fun. This type of writing is wonderful in so many ways and it's so damned painful in so many ways. It's not cathartic. It keeps me in misery at times but I'm really ok with it. That's how this story gets told. Don't misunderstand. It's not a miserable story. There are pieces that are excruciating that characters experience. I want the reader to relate to their own personal experiences of pain.

Joy will juxtapose the pain. Balance is always needed and good will always triumph. In some stories there is a price to pay for it.

That's it for now.  Where I've been. Where I'm heading. Onward.

Wednesday, April 19, 2017

To my Peanuthead

Start over no matter where you stop. Never quit quitting. If I can do it so can you. Start somewhere. Keep going. Have you tried this? Have you gone there? Read this? Taken that? Prayed? Praying doesn't work because no God would allow this to happen. You are so strong. Keep going. You can do this. ***Silence....Retreat....Withdrawl....Silence*** You may be reading this and interpreting this in many ways. I'll say this: acceptance is beyond difficult. It's challenging for the recipient of the challenge and for the loved ones.

 I had a very close friend who died of breast cancer years ago. She was in her 30s. I remember many, many flights to Cincinnati from Grand Rapids. Driving every other weekend as often as possible. I was in grad school getting my masters and she was getting her PhD when she had gotten diagnosed. People thought we were sisters. I miss her. She was hilarious. We had inside jokes and she could make me laugh in a way no one else could. She understood me and any kind of emotional suffering without me having to say a word. She was kind, compassionate, generous, giving, beautiful, loved music, and fashion. On a day like today, I would love to have her over so she could slurp coffee (like she would) out of her saucer because she overfilled her antique, thrift store find, coffee cup. Sip, and always, ALWAYS, spill on her shirt. Then she would ask to borrow another one, "Of course, honey." We'd finally get down to business and talk about what was going on. My anger, irritability, the need to throw breakable things into a wall.  Or her our latest crushes which was the cause of my irritability.  We'd laugh so much over it all. We knew how how temporary it was because we knew who we really loved and neither one of us were with them.

We were 21-22 years old. The world was ahead of us. There was no cancer. No neurosurgeries for either one of us: "Peanut I don't want you to see my crainiotomy scar from my metastasis. It will only make you sad." I've had 2 crainiotomies and I've often wondered the sadness she would feel knowing that. I know she would know we were bonded in a way others weren't. She was my hero.

 I love this quote:

When she died I was relieved for her. She had wanted to die for a long time. We had discussed her death for the last year of her life and especially that last month. She was really concerned about her other friends and how they might respond to her leaving this stage of existing. She knew I was truly in a place where I had accepted her death as part of her life.  Of course it was cruel, unjust, sorrowful and grief filled. I felt blessed that we had the relationship we did that we could be truly bare bones, no bullshit honest with each other so that whatever she faced (tests, chemo, radiation, surgery, pills, on and on... Her funeral plans)... We faced it together.

I did not attend her funeral which may have some of you wondering. She made me promise her I wouldn't attend. I went to visit her 2 weeks prior to her death with 3 other of her closest friends and we had a great time.  The promise we made happened prior to this visit and we had discussed it often. The reasons don't matter. I put together a very small celebration of her life with a few people who loved her complete with photos, letters, pictures and Jameson. A proud Irish girl has to be toasted and sent off in the proper way.   I hope I've done her justice here and given all of you a piece of my mind's eye into my friendship with her. I will always love her so much.

My last 3 things about her: she loved gin and tonics, clubbing, photography, sleeping with the comforter wrapped around her head, over cooking chicken, spending too much money on me, Mexican food, travel,  and French movies that I made fun of later. I guess that's more than 3. Ha! Here are 2 pics. The B&W is one she would love. The other is well...

Wednesday, January 11, 2017

All things medicinal.

My thoughts are bouncing, ping-ponging off my broken, reshaped skull. It seems that I can't grab them long enough to find the meaning or feeling or.. What... In them. 

Or to even finish them long enough to have proper grammar. Don't judge. The struggle is real today. 

I've been taking "selfies" (ugh how I detest that word) everyday. It's a kind of digital journal. I have this perception of my external self: good, bad or indifferent we all do. This illness, how it effects my body will Med side effects, my facial swelling/redness with pain... These things have worn me down. After awhile of wearing black yoga pants, a black tshirt, and a tie jacket I don't feel too sexy for this blog. Know-what-I'm-sayin'?

This was me about a week ago. I had been in bed, in pain. This is serious bed head. Ha! It's natural, it's me, I'm in a crappy tshirt. ๐Ÿ˜ƒ #painsucksbutgreathairneverdoes #greathairmakesallthingspossible #itakenocreditforthecurls #thankmomsDNAforthehair 

This morning I was thinking about some heady stuff. Love. Friendship. Regret. Sacrifice. Will I regret down the road? 

I have made it a policy, my life philosophy, to never regret my choices. It's the decisions I don't make that I will feel horrible about so I follow my heart. As much as life allows. And I give myself a wide birth because we only do this once. I'm 49. My family is dead. I have kids who Need a role model and not someone else's idea of what that should be. 

80s flashback with this most kick ass sweater. It's heather gray AND off the shoulder! Holy Siouxie and the Banshees Batman! I love this thing. Makes me aaaalllmosssst appreciate the point of winter but...I won't go that far. 

As I waited for my morning Joe to brew, a lack of caffeine meant little ability to stop the onslaught of honest thoughts and feelings rattling through my heart.  *shakes fist to the Heavens* Love. Lonliness. Expectations. Anger. Friendship. Surprise. 

So many things to shuffle. To process. To wrestle with. 

Throughout the day the meaning would come to me from a long felt riddle I have been dealing with. 

Today 3 things came to me:
1) I'm angry about a few things. 
2) I thought I'd be in a different place at 49. 
3) I thought I wouldn't be sick anymore at this point. 

I can't regret these things. They just... Are.  

Wednesday, January 6, 2016

2015: oh... Gone daddy gone....

The year started with neurosurgery - my first MVD- and beginning a year long recovery.  For those of you who don't know, MVD stands for micro vascular decompression. The surgeon cuts a substantial hole in the skull (a craniotomy) and removes the bone. From there he unwraps the trigeminal nerve from the brain stem and sees where the damage has occurred in any of the five branches of the nerve in the face. I had damage in three but most substantial was an artery had wrapped itself around the trigeminal nerve and had cut off almost all of the blood supply. (The same thing had began on the other side of my face - you'll read about this in a moment.) My surgeon was surprised I hadn't had an aneurysm. 

April brought sunshine, snow melting, beautiful weather and an emergency hernia repair. 

September. The end of a great summer break for the kids. I love love love having them home and it's sad when they go back. They had a supreme vacation with their family but I did not join them. I was in far too much pain and just.... Couldn't. It broke my heart. 

So I missed their first day of school as I was having my second MVD (micro vascular decompression) on the other side of my face. I contracted several infections and was extremely sick after surgery. One of my closest friends took a BUS up from Arkansas and left her child and hubby behind to care for me and my family for THREE WEEKS!! I cannot express the gratitude in my heart for that act of selfless love. 

Thus, begins my year long recovery with that MVD. We are in January now and I did not have a decent level of success with this last surgery. But it's all good. Trigeminal neuralgia is like that. It does what it wants. Surgery is not a guarantee but it did save my life, twice, even if pain wasn't improved the second time around. 

I have finally begun to accept that. I have no power or control over what this disease does in my life. Just like my tumor. But I do know that I received some very good advice from a friend who suffers far greater than I. He said, "no matter what, do one thing a day." Today I've done seven so far and counting. It still looks like Christmas vomited in my living room but again I've had to try to accept that with chronic illness, those things aren't important. Eventually things get tossed, put away in their place. And I feel like a million bucks because although I'm in bed with horrific pain after, I did it! 

It counts. 

Isn't she gorgeous? I'm not a new agey kinda person but wow. This sculpture really rocks my world. 

It's January 2016 and I'm reconnecting with old friends. I'm anxious about what my life will bring this spring. 

I am excited to see the progress of my book. And just get better. With everything. ๐Ÿ˜Š 

Here is to a healthy, happy, fun, outrageous, exciting, blessed new year for us all! 

still searching .....

Monday, November 17, 2014

What a shit week.

I'm warning you all now, if you want some feel good blog post -- this ain't it. In the last week alone I have been mourning the loss of a beautiful girl named Faith. She was 10 and Jacob called her princess. The boys and Faith shared an AI classroom for two years. Jacob retrieved just about anything she wanted and I didn't even know her real name until I asked the teacher who Princess was". 
When her mom found this story and history out so she asked me to send a picture of Jacob so she could print that story out with his photo and bury it with her. 
A mom, like me, buried her 10 year old little child. 
A good friend of mine, two days after the funeral, was told her 18 year old, angelic son had been killed in a fiery car crash. He didn't suffer. Kendra shows a level of strength that I have never witnessed. 
A mom, like me, is burying her son on Sunday. 
In the middle of this, I am mourning my own loss of my first child. On November 12, she would've been 10. 
I am that mom. 
Yes, I'm holding my rascals so tight they have to give me the obligatory, "mommmmm!"  I know my hyper vigilance will settle. I know I will persevere. All I want right now is to be a really good, encouraging friend. 
This past week has been strikingly painful and profoundly intense. I haven't slept in 36 hours so I apologize for the ramble. 
I don't know what else to say other than I need to get back to living life. Regardless of quality. Regardless of shitty pain and the like, I have to do something. 
And I need all of you to hold me up for awhile.
Still Searching. 

Wednesday, October 8, 2014

Baby Please Don't Go....

Right now I'm listening to Mike Posner's famous 4-track song he made in his dorm room: Please Don't Go. I love this song: "...I stay running from Tommorrow...." 

It's simple in lyrics and in sound. I guess that's why I like it so much. That and he's not sore on the eyes for a man of his young age. ๐Ÿ‘€

I need simple and torn down and simplistic. In words and sounds and vibrations in my spirit and heart. Yet deep and meaningful.  

I was hospitalized last week. I had extraordinary pain for 72 hours straight. Seeing through the pain wasn't an option any more. That's when you feel your spirit and sanity break through your bones and brain. A brain hemmorage and carotid dissection were ruled out. After being given several pain meds, including morphine and dilaudid, my pain had broken but only by half (not that I was complaining). I also experienced something that they initially referred to as a cardiac event. (When my chest squeezes to the point I'm screaming, the crash cart comes in with several medical staff and they are slapping EKG wires on me and my BP is up to 160...) I need to see a cardiologist although my EKG was "ok but not perfect but not enough to keep me there." 

Thanks for the vote of confidence. 

Anyway--- with the pain is creeping back, I'm beyond exhausted from it.all. 

The doc comes in and says "we don't know what caused all of that chest pain but I'm fairly confident that you'll be ok at home.  We've ruled out the biggies on your brain. Call your docs in Ann Arbor. They will know what they want you to do. We will load you up with pain meds and get you out of here."

Uuuhhmmmmm. Wow. Just wow.

So, I'm entering this several days after those last thoughts. My son, Joshua, re-energized my efforts towards writing. Here I am. 

A friend of mine and former colleague once told me, "illness knows no pride." This was a lesson after her husband was diagnosed with bone cancer. He lost his career. They lost his income with two kids in college and they lost their home. Her mother became demented and moved in while he was coping with chemo and her grandchild was practically abandoned. So she became a new mother at 55. 

Somewhere in the mix of all of this, she learned to ask for help. From colleagues, her church family, neighbors, strangers online. It didn't matter. The bottom line was this: she needed help. 

Illness knows no pride.

I have learned this lesson sharply. When I set up my gofundme account I was shocked at the outpouring of love by total strangers. My friend from high school, who I haven't seen in 30 years donated a ridiculous amount of money. I've had people feel awkward "for me" which is strange because I don't feel awkward, embarrassed, etc. 

Illness knows no pride. 

What I've overwhelmingly learned while I've been sick is that people want to do something but they don't know what. This has given them an outlet. I thank all of you for the amazing support. 

I had a total stranger show up on my doorstep three weeks ago who found out about my illness through folks in the neighborhood and she wanted to offer her services to help me. 

Who does that??

Many angels have been sent my way in the midst of tremendous stress, pain and chaos. 

I just want it to end and I'm struggling with the fact that it's not.