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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.



 Yes
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. 😃 #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. 😊 

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. 👀

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. 

Blessings. 





Wednesday, June 25, 2014

Pain and The Flight of Birds

I'm sitting in my "four seasons room" which is really an add on to the house my father completed before he died. We use it all around the year which is really stupid. In the winter, it gets down to close to whatever temp it is outside. In the summer, it gets 10-15 degrees hotter than the temp outside. So keeping the slider to this room, which opens to not only the dining space/kitchen but also has another slider that opens to the deck, keeps the house in a constant state of flux.  Mimicking my state of pain on any given day.

Today is not a day of flux.

It's a day of constant growing motherfuckin' unrelentless pain. With every minute it only grows. I'm growing weary of every symptom. Trying my hardest to stay positive and hilarious in this experience. That shouldn't be difficult. It's scientifically proven that I'm hil-AR-ious. 

 I'm sitting in a semi quiet space as my head pain escalates and I ignore it while I focus my attention on the many bird calls I hear outside. I have a large backyard and many animals live in harmony here. It's quite beautiful and I am more than lucky, blessed... Whatever your moral compass is. Some days I lie on my bed and stare at the birds that collect on the deck outside my bedroom. As my pain escalates, I deep breathe, I pray, I replay certain memories that bring me joy and love. 

The pain escalates. Thoughts of percoset  are gnawing at the back of my head. 

No. 

Stubbornness wins out. For about five minutes when I have a shock of pain that feels like Someone stabbed me behind my eye while electrocuting me. And nothing short of it. 

Good times. 

As my face swells (pain does that) I hesitantly suck it up, both figuritively and literally, and take the damn pills. I both hate them and love them. They make me feel like I'm weak and that I'm never going to get better. 

This has changed. We've added to more pills onto this, wahoo!!! This is my evening snack. I take 7 in the morning and just one at lunch. So, not too bad. Then add in Percocet and injectables if I decide to take them. I'll tell you what giving yourself a map of scar tissue from injecting on your thigh is really quite a feat. Something the medics never told me would happened. 

 I think I should stop now. It's been cleansing. Writing some of the truth. I'll write more later. Let me know how you all are. I've been reading too many stories of pain, misery and death. So I'll end this on a funny note: 
Hang in there. Remember there are ALWAYS choices. 

Still searching, 

J



Sunday, December 15, 2013

Funny moments in my little world

1. I was mimicking a voice from a cartoon Joshua was watching. He says, "mom, you sound like a witch that's so old she poops her pants."   What a charmer. 

2. We were at the boys' grandparents house today baking Christmas cookies. As we left I softly said to Jacob, who is autistic, "hey wanna give love to your gramps and say thank you for today? He replied, "sure! Why not? He's a fine fella!"
Clearly this was my other twin from story #1. Ha! 

3.  My charmer twin, who really is, told me I not only looked beautiful, sang beautiful but God made me beautiful on the inside. He paused and said "tears of joy mom?" Were they ever. 

4. Jacob has been exhibiting more eye contact, more hugs and touching than at any other time I can think of in his life. I am so blessed!!!!! 
Jacob sleeping

Jacob obsessively doing math problems 

My love, Joshua who's also a stinkpot lol

Eating and loving spaghetti for the first time!!

I felt like posting something real on the ithe side of life for a change. Stay warm!! 

Still searching....