Thursday, March 9, 2017

The Limit

This week has been really interesting... or some other ridiculous cliche... I have officially reached my limit. I'm sick of putting myself first, I'm sick of my health being my number one concern, I fucking tired of taking naps. I never thought I would think those things, let alone put them in print for all of the world to read. Who in the hell thinks like that? Simple answer; ME.

Back in December I went through the most recent "health trauma" that ended up bringing a 2+ year "health battle" to a culmination. About a week before Christmas I was diagnosed with yet another, ever exciting, thrill-ride of an incurable illness- affectionately known as Rheumatoid Arthritis. I spent all of December feeling like I was being punished and not able to leave my house because of the pain and swelling and well, the not being able to walk. I started on a course of different drugs to reign in my immune system, reduce the swelling and inflammation and alleviate my pain. It was progressive therapy, slowing modifying my doses to try to find the cocktail that works for me. After about 8 weeks we (my medical team and I) decided that it just wasn't working.

Insert beginning of the new year, fresh starts, and commitments to myself and the world around me. I am a natural caregiver. I LOVE taking care of people and I honestly want to make the wold a better place, this is what drives me in life. For this reason I made myself a promise for the year. It was so much more than a resolution, it was a commitment to be true to myself- fearless authenticity. let's just mull those words over a bit.

  • Fearless- without fear; bold or brave; intrepid
  • Authenticity- the quality of being authentic; genuineness
    • Authentic-(noun) not false or copied; genuine; real
    • Authentic- (adjective) representing one's true nature or beliefs; true to oneself 
    • Authentic- (adjective) entitled to acceptance or belief because of agreement with known facts or experience; reliable; trustworthy
Those are intense words, so much to live up to. As per the usual, I feel like if sharing my story, the messy details that people don't want to talk about, can help just one other person on their journey; it is worth all of the icky vulnerability. This is the only way I have left to make someones world a little bit better. 

This is the point where you decide; do I keep reading this; is she going to just complain? Do I check out here and get a few more minutes of puppy videos instead...? Hey, I won't judge. We all make choices, I hope you are happy whichever way you go... 

Awesome, you stayed. Here is where the shit gets real. I'm so glad we are in this together. 

I'm guessing that the number one reason you stuck in here was because you are dying to know how any person could literally hate naps. I assure you, its possible. 

As I mentioned above, I have been on this journey for about 2 years. The majority of my days consist of me going to work and going to bed. I don't have energy for much else. It gets old. As the time progressed I slowly and reluctantly had to give up the things that I love. I am a busy person by nature, I can't sit still; never have. I LOVED that about myself. I have a ton of interests and I love actively pursuing all of them. I never felt overwhelmed or over scheduled; all of these things brought me joy. At first I told myself that I only had to give something up temporarily, that I would get better and things would get back to normal. 
When I made the first round of cuts it was with optimism; I would be back at it in no time. I let go of spontaneous date nights, random outings with friends, the occasional late night...Then I realized, I'm still too tired and I'm NOT getting better, what else can I give up in the short term? The next round of cuts was harder. These were things that I hold near and dear to my heart; running & working out. This was hard, I use fitness to help process the challenges in my life, there is no better therapy than pounding out some miles with a kick-ass playlist. 
The third round of cuts killed a little piece of my soul. I released things like cleaning my house and building my non-profit. I just kept telling myself that I was no good to anyone if I wasn't working to make myself better. I needed to rest and recuperate; then I could come back better than ever. 

My diagnosis in December came with relief in some ways and an overwhelming sense of loss in another. I finally felt validated because there was a name and an identified cause for what is making me feel so awful. With it came the crushing weight of a lifetime of fighting another illness without a cure and the sinking realization that all of the things I have given up to make my health a priority may not come back into my life and if they did; it would never be the same. It also forced me to understand that this is truly the beginning and there will be more that I will have to let go. 

I, like millions of others, live my life paycheck to paycheck. It's not something that I want sympathy for or feel bad about. It. just. is. It's a fact. For this reason, one thing that I cannot give up is my job. There are days that it crushes me. I'm not going to lie, the last few months have been unbearable at times. It's getting better now and I see some light at the end of the tunnel there and for the first time in a long time, that light isn't a train. However, regardless of how I personally feel about what I spend 40+ hours a week doing; I don't have another source of income... so, health insurance and a roof over my head have to be driving factors in the decisions I make. 

A couple weeks back I was having a discussion with my partner when it suddenly hit me. I've slowly given up everything. All I have left is work and naps. I have no hobbies, I feel isolated from friends and family because I honestly don't have the energy to spend time with them. I go to work and I come home to go to bed. IT. SUCKS. It was with this motivation that I made the decision to start the next wave of treatment. I did my research and weighed the pros and cons and I went in scared. 

Last week I received my first IV infusion. Yep, this girl that is terrified of needles sat through 5.5 hours in the hospital; a majority of which I was hooked to an IV. Truth be told; the actual treatment wasn't all that bad. I sat in a heated chair, my nurse was great and I texted and face-booked with some incredible women. The aftermath is still unfolding and it's been a relentless endeavor. I planned for the worst and hoped for the best... I landed comfortably in the middle.

Here's a basic rundown of each day: 
Friday- post infusion nap resulted in being in bed for the rest of the day
Saturday- post infusion hang over- I spent almost the entire day asleep and when I wasn't asleep I had a massive headache and wanted to barf. Not pretty. Intense pain radiating from my knee, my hip and my left hand. neat. Seeing pictures of the amazing, brave, bad ass women in my life completing their races brought on alternating waves of motivation to fight back against RA and unexpected and powerful bouts of grief for the life I once had and may never have again. I was a disgusting emotional mess.. snotty and ugly tears for most of the day. 
Sunday- I lost my shit from almost 2 solid days of sleeping and felt compelled to accomplish something; anything. I way over did it. Yeah... restraint, not my strongest quality. I'm not proud. My main fuel came from me figuratively waving my middle finger at RA and literally muttering obscenities under my breath telling it that I would NOT let it control my life. 
Monday- WOOHOO back to work, can you feel the sarcasm? 12 hour day, not planned. Go directly to bed, do not pass GO- I suppose you can collect your $200- you did work all damn day. 
Tuesday- Yep, still in ridiculous amounts of pain. New development- my hair is falling out, like in handfulls; ok, I read that hair loss is a side effect of the drug, it's ok... I can lose my hair. I'm a bad ass warrior woman and bald is beautiful. Wait. What the actual fuck? I have a bald spot in my eyebrow. What fresh hell is this? My eyebrows are falling out! This is NOT ok. This is my face. FUUUUUCK. *insert meltdown in work bathroom while I slowly remember that eyebrows are made of hair* not my finest moment but fearless authenticity....right? 
Wednesday- I am tired as shit. Why does my body hurt so much...? ohmygod are they looking at my eyebrows. Lead powerhouse work team that will change the world? almost, we're pretty close. Save the world for one of my crews? you bet your sweet ass I did! Work for 12 hours again? how the hell does this happen? it's like I suddenly time travel and it'ts never in a good way. Home to bed. yippee. 
Thursday- (today) the first message I received today: 
I love Fellow Flowers and I am a proud member of FFCrew. These women are amazing and I am instantly reduced to tears upon reading this message...yep, it's going to be one of those days. I am drained. Drained means that pretty much everything makes my cry. like for real; everything...Is it Friday yet? Ok, let's just be real here, when does the hurting end? does it end? quick facebook check as I wait to travel between sites reveals that 3 women have sent me messages telling me that I inspire them? Wait, me?? **UGLY tears** lots of them... in a factory.  I suppose this is all worth it. 

This leads me to the answer to why I hate naps. YOU have been such a trooper to hang in there... I know it got a little dodgy in the middle. 

1. I am a perpetually active person that truly loves being active. 
2. I have officially given up everything that I can give up in attempts to make my health a priority. The craptastic part is that I have not forgotten what life was like prior to being "sick". 
3. When I was a kid, time-out was a punishment. When all you have left is work and time-out you feel like you are constantly being punished. 
4. ergo, naps = punishment

As I get myself ready for bed I reflect on everything that I have processed today. WOW. It's been something. I find myself once again in the messy middle of things and I'm just doing the best I can. I know that I will get this figured out. I will find balance. More than anything, I want any person to know that when you are in this position; you are doing great! Getting through the day is a success. You might feel totally overwhelmed and like you are a complete shit show, but remember; we're in this together. 

Saturday, April 30, 2016

Fear

Recently for a writing workshop I was given the topic of fear to write about, I did what any self-respecting grown adult would do… I plugged my ears and shouted “la la la” a million times AND procrastinated. When faced with things that scare me I tend to procrastinate then I cannonball. What the hell is cannonballing? Good question. It’s a terrible adaptive practice where I close my eyes, plug my nose, hold my breath and take a running start at whatever is daunting; then I leap whole-heartedly into it.
This year is my “year of yes”, inspired by Shonda Rimes and her very real description of what life is really like when you step outside your comfort zone in pursuit of what truly sets your soul on fire. I too am working on crossing the invisible boundaries that have held be captive for far too long. In this spirit I did actually plan to start writing at a decent hour. I started with a list, lists are my go to; my happy place. I LOVE lists. I’m also a planner. Some may call me meticulous and anal-retentive; I call me organized. My first list was of all my dreams. I eased myself into it. I started with all of the things I want to accomplish in life, the places I want to visit, the achievements I aspire to and the emotional growth that I am working toward. All good things! –Yes, I’ve got this! I can totally tackle fear. I am a BADASS-
Then things got a little messy and weird. I wrote the lists of things that are stopping me from accomplishing all of my dreams. I wrote down all of the horrible things that the little voice in my head says to me, in the dark of night, when no one but me can hear them. That voice is an asshole. This list is long. I am afraid of everything. Not like “wrapped in a fetal position hiding out in my blanket fort” afraid, but legitimately fearful. –Nope. Hard stop. I am NOT a BADASS- (insert 2 weeks of procrastinating which ultimately results in me cannonballing…again.)

As I sit here preparing to hurtle myself off the end of the dock, I’m mentally cataloging the content of the list that can stop me in my tracks I’m seeing two major themes:
  1.  Abandonment
  2. Enoughness

Two words. Two. Medium-sized. Words. ...that can effectively stop my bullet train and make be rock in fear in my blanket fort. How the hell can two words leave me so weak in the knees?

Here’s how:
Abandonment has kind of been the theme in my life. I’m the product of a mother that has been married 3 times. This left me feeling like anyone that I got close to would leave me. I’ve made it a priority to let very few people in, and those that I do let in are never really all the way in. I’ve broken my own rule exactly twice. Once with my college love; my soulmate (at least I thought). We were together for 7 years and ultimately, he left me because I cannot have children. A few years and a lot of soul searching later I felt like I was ready to be released into the wild. Surely, this same situation could not happen again...right? I fell in love, I got married, I got really sick, and my husband left me. GAME OVER. What’s the old adage: fool me once, shame on you; fool me twice, shame on me? Well, this has successfully ingrained in me a healthy fear of abandonment. My solution? Don’t let people in. If they aren’t ever really “in” you can’t need them more than they need you. When they leave, because let’s face it… most do, they can’t hurt you if you don’t let them. The flaw, they also can’t help you. They can’t hold you in the dark when your world stops.  They can’t celebrate your victories. Lonely Woman Island is a great theory… it’s a terrible practice. I’m trying to stop, I swear. That’s what “year of yes” is about for me.

Enoughness is directly correlated to abandonment. I legitimately feel like I have a proven track record of not being “enough”; not pretty enough, not strong enough, not smart enough, not fast enough, not having enough, not giving enough, not taking enough, not working hard enough, not having enough time, not making enough time, not kind enough, not loud enough….trying to be “enough” of all of these things is truly exhausting. The alternative is that when you are not “enough” you are abandoned in the search for someone that is. Is my logic flawed? You can bet your behind it is. As a psychologist; I know that this is not correct or based in any sort of fact, but once again… that voice in my head is an asshole.

The goal of 2016 is to actually start living fearlessly. This year marked a milestone for me; I was called a hero by someone that I am close to. I’ve never been so caught off guard in my life. I was terrified. Deer in headlights; frozen. How do you respond to such an epic compliment when you honestly do not see it in yourself? How do you respond when someone tells you that you are an inspiration to them, that they move through life because of you; because you are brave? Don’t they know that I am a hot mess…? Oh, wait… no they don’t because I don’t let them in.

There is only one answer to this challenge: you live up to the expectation. That is why I am working through my fear; not only do they deserve the self that they see; that they believe… I do. I deserve to be the person that I reflect on the outside.

I will get there. Even if I do need to take the occasional time out to huddle in my blanket fort… I need to be patient with the process, I need to learn from the challenges and shine with the accomplishments. I need to ask for help, then most importantly; I need to accept it.
The biggest challenge is going to be turning off the voice. I don’t know how I’m going to do it. I don’t know how long it will take. This is difficult for a planner. I’m a control freak; I own this trait wholeheartedly.


…ok, here we go- deep breath, picking up speed, close my eyes, plug my nose, lift off and CANNONBALL!

While reading this aloud to the group I was shaking with anxiety. I had to remember to breathe, the words were caught in my throat. What were they all thinking of me? I felt so raw and exposed. It was awful. Then came time for the comments...I held my breath. -This was terrible. Word vomit. They hated it.- The first comment was "thank you". I relaxed. I took it all in, I accepted the comments, the appreciation, the clarity. Then it was gone, that anxiety, the asshole voice, the fear... all of it. I felt so light and free. 

As I listened to the other writers share their stories I noticed patterns: 
  • We are all terrified to talk about how alone we feel 
  • We all feel like we are never enough  
  • We all fear that we will be abandoned for being who we truly are


WOW. Powerful. If 7 people on a phone call, from all walks of life, male and female, gay and straight, all ages... are experiencing the same feelings; are we really alone? The connectedness was palpable. As a psychologist; I'm intrigued. As someone experiencing the daily battle with "enoughness"; I am strengthened. As someone terrified of abandonment; I no longer feel alone. 

Closing thoughts; we all have a common enemy; that voice in our heads, the asshole. Maybe by exposing it to the light of day we can effectively silence it forever... 

Wednesday, March 9, 2016

Who can I talk to about this plan...?

There are 2 things that I generally avoid talking about: religion and politics. People are passionate about both in such ways that they sometimes miss the message because it doesn't fit in the neat little box they are comfortable with. In efforts to hold true to this were not going to call this a discussion of religion; instead it's just my personal belief system. Take from this what you will, share what resonates with you; but above all else- take a moment to reflect.

I've lived a challenging life. I've faced down things in this short 32 years than many people will never encounter in a lifetime. There is one phrase that resonates so strongly with me; it is the foundation of my entire belief system. This phrase is so controversial, it incites great passion; both positive and negative, with many people. One thing that I am working toward this year is to stop worrying about controversy, I am me. This is what I believe. It's ok if you don't. You are 100% entitled to your own belief system. If you want to share it with me, I would love to hear it.

This controversy starts with 5 little words.

...are you ready?

EVERYTHING HAPPENS FOR A REASON.

Yup. I've gone and said it. You can tune out here if this is the worst phrase you have ever heard... OR.. you can choose to hear me out on why I TRULY believe this philosophy.

I didn't always feel this way about this phrase. Honestly, I thought it was bullshit. That thing that people say when they don't know what to say... you've been in that situation. We all have and I think that is why we are generally so off put by this saying. It seems impersonal, cold, and even snarky. I started to see this phrase differently about a year ago. I was angry, lost and scared. I had lost my job and was having a really hard time finding a new one. That's when I got the call. My Grandmother was sick; she was dying and the one thing she wanted most in the world was for me to come to her.

My Grandmother was my best friend. She always supported me, she provided the hard advice when it was needed and a laugh when I really wanted to cry. We were so similar in personality and life experiences. She was a stubborn, deeply religious woman that truly believed that God had a plan for her; she never doubted that plan. I didn't have her faith. I always doubted the plan for me. I couldn't understand why life worked out the way it did... Of course I did what most people do when their Grandmother calls to tell them that they are dying; I bawled... like a baby. Between my sobs I managed to convey that of course I would come to her and I would be there to the end. She said to me "See, everything happens for a reason. If you we're working, you might not be able to come". Right then and there I truly believed that she was right.

March always brings about a time of reflection for me. This March I am celebrating 14 years cancer free. It's almost like I celebrate my clean slate in life in March, I look at what the last year has given me and I am so grateful for it; the good, the bad, the disasters... all of it.

This March I am reflecting back on the last year and the thing that I am the most grateful for? Losing my job in 2014. Crazy right? Who in their right mind is thankful for being fired? This girl. Here's why.

I lost my job in November 2014. By December, I still didn't have a job. This allowed me to go home for Christmas for the first time in 10 years! This is something that my retail career NEVER allowed for. During this trip home I got to surprise my Grandmother for a couple days. This was before we knew how sick she was. We stayed up so late both nights I was there, just talking. We shared stories, we laughed, we cried. She taught me lessons and helped me understand things I was struggling with. We spent 5 hours making and baking a single batch of cookies; her signature cookies. I am so incredibly grateful for this time. Those are memories I have because I lost a job. Everything happens for a reason.

In March 2015, when she made that call to me I had just done an interview for an awesome job. When I got to her house; the first thing she asked was about that interview. She KNEW I was going to get that job; there was not a doubt in her mind- she had faith in the plan. This time I had with her in her last days was remarkable. <I will share more about it another time.> She had just hit me with the mind-blowing "everything happens for a reason" conversation about 5 days before and the whole time I was there with her she made me really see it. Right down to our very last conversation, she was reminding me of the gifts that I had been given through the challenges that I had faced. She kept telling me "they are going to call you when the time is right, you're going to get that job". As I was holding her hand while she slept; in a desperate attempt to keep her there with me for a little while longer; I contemplated.

She was right, as always; the most difficult things in life had offered me the greatest gifts.

  • surviving cancer- refocused me on the positives in life
  • having a hysterectomy- reminded me of the strength my body has when I was feeling so weak
  • losing my grandfather- taught me that he lives on in me through the lessons he taught me, even the small ones
  • getting divorced- showed me that I can love myself even when I am alone
I needed to have faith in the plan... who was in charge of this plan? I need to find them and get the details. 

I was raised a Lutheran, I went to church pretty frequently- with my Grandparents. As I grew older I struggled with my beliefs. If I was a person from the Bible; I'd be Job. Nobody wants to be Job. This made me think about what the purpose of my life was. Am I being tested? Isn't the point of a test to gauge what you have learned? WHAT AM I LEARNING?

As a psychologist, I am a firm believer in the Humanistic school of thought and it's drive for self-actualization. This process is a quest for knowledge, understanding and spiritual enlightenment. The theme I keep coming back to in my life  is sickness. As I've mentioned before; I've always been sick. People I love have been sick, I've lost people dear to me from sickness... now I'm not talking cold or flu I'm talking cancer, heart failure... the big stuff.  So what in the hell am I supposed to learn from all of this sickness? 

This brings me to phase 2. I am part of this EPIC group; Fellow Flowers. I started following them in 2012; as I was working through some heavy stuff with sickness and my divorce. The first thing I saw was a bright red flower. I'm not normally a "red" person; but the message on it hit me like a ton of bricks. 

Love. Passion, commitment and spirit. Caring for the world around you. Bringing it- every damn day. It takes strength to do what you love. 

Powerful. Right? For someone that has struggled with a life of sickness and is working diligently toward self-actualization; this spoke to my soul. This felt like it was plucked from my head. This was love at first sight and began what has been the best relationship of my life. Everything happens for a reason, right? This message and these women came into my life when I was struggling something fierce. Three years later, when I was struggling again; more flowers bloomed into my life. These women have become such an integral part of my life, they feel like they have always been there. 

So when Mel and Tori- the founders of Fellow Flowers, announced that they were having this awesome retreat filled with other women that think like me, believe like me and want to grow like me; I knew in my heart I had to be there. All of this came on the heels of losing my Grandmother. The catch? I had just started working that job that my Grandmother knew I was going to get. I was still trying to dig out of the unemployment hole. You see, they called me to offer me the position less than 24 hours after after she left me and this world for something better. ...are you starting to believe that everything really does happen for a reason yet? 

Yes- that's awesome! I knew you would. 
No- hey, that's cool... keep reading. 

I put it out to the universe, the master planner, karma, my own personal "plan designer"- whoever would listen... that I NEEDED to go to this retreat. I knew it would be cathartic, healing and powerful. I knew that there was something I needed to learn there. I saved my pennies, I painted and tried to sell some pieces... no avail. It wasn't coming together. Then out of nowhere I entered a giveaway that they were doing; grand prize- a trip for a girlfriend and myself to attend this retreat. I wrote about a dear friend and how much she and I both needed a positive experience, we were both struggling from opposite sides of the country and all I wanted to do was hug her. She got the results before I did. As I read her email detailing how we had just won a half priced entry; I cried. I heard my grandmothers voice saying "see, everything happens for a reason". 

I went to the retreat! I laughed. I cried. I formed relationships with the amazing women. I climbed a freakin' mountain!! That was a huge bucket list item checked off for me. I was literally on top of the world. Every day I was there I vowed to learn something AND to share something. I was going to make this count. The universe gave me a gift when I needed it the most. I was given a chance to heal, a lesson in accepting myself and renewed faith in "the plan". 

What I didn't know at the time was that I was just gearing up for the battle of my life. Once again, sickness was a huge theme in my life. Going to the retreat re-energized me, it taught me that I couldn't do it alone- I was going to need my tribe for this one. I learned that I shouldn't be ashamed of what I've lived through; what I AM living through. My story is powerful and if by opening myself up and showing the battle scars helps just one other person know that it's ok to be vulnerable- that is a win. 

So, what have I learned from a life of sickness? Patience and trust. I believe in reincarnation. I believe that we are meant to learn something in each life we experience. I believe that each life has a theme that runs through it. Take a minute; reflect on your life- do the dots connect in any sort of pattern? That's your life's lesson. For me; my lesson is to slow down, to trust that I really am where I am supposed to be; to be patient- with myself and others.

If we correlate the level of sickness that I am experiencing to the importance of the lesson I'm supposed to learn... you will totally see that I am my Grandmother's granddaughter- stubborn as a mule. I'm thick-headed and apparently, a slow learner. This lesson is a doozy and I am so grateful for all of it... because everything happens for a reason...even if it takes us 32 years to figure out what that reason is. 

Trust the plan. 
Live in the moment. 
You are EXACTLY where you are supposed to be. 

Monday, February 29, 2016

...but, you don't look sick?

The famous phrase that I hear from so many people... those 5 words have literally made me question my sanity, self-worth and every single decision I make of every single day. A few months ago I read an amazing article on butyoudontlooksick.com by Christine Miserandino (I linked it HERE, check it out!) This simple explanation of a day in the life with chronic illness hit home for me. It is so hard to explain, I've struggled for years and she nailed it!! While I don't have Lupus, that I know of...yet; every day is a battle. I feel terrible that I can't muster the strength to go out with friends. I know that people get sick of asking and me saying "no", but how do I explain I need to have an honest conversation with myself to decide if I can get home from work safely and then go straight to bed because my body is wrecked and my brain is no longer connected to it. Some days I literally have to choose between taking a shower and eating dinner because I don't have the energy to do both. There are days that I hurt so much that getting dressed is painful and "putting my clothes on hurts me" isn't really a viable reason to call in sick. So rather than try to explain it all; I avoid the guilt and the shame of telling people how sick I am and I power through life. I smile and laugh, I do my best to follow along with conversation; even though sometimes I get lost because it's hard to think, I keep myself busy with helping others so I don't have time to worry about myself.

I'm openly writing this because I know that there are others other there just like me. This year I was gifted the most incredible thing; someone paid my tuition to attend a Semester of Living Brave; a compilation of 2 courses that are taught by Brene Brown; it's changed my life. For that I am eternally grateful. First of all, accepting gifts is incredibly difficult for me. I don't mean that in the sense that your mother says; "no... I don't want a birthday gift...". Accepting a gift to me is almost painful, I am so much a giver that when I receive something for no reason other than "because" I struggle to process it; even though this is pretty much the mantra of my life. That is another story for another time. Anyhow, to cycle back to my point... Brene Brown has made me take a look at things an realize that my coping mechanisms are flawed at best and downright terrible if were truly being honest with each other.

To quote Brene Brown- Vulnerability is the last thing I want you to see in me, but the first thing I look for in you. - Daring Greatly

As I have mentioned before, I'm a perfectionist. My entire belief system is founded on avoiding shame and judgement by creating the perception that I am a superhero... Here lately I have either been a terrible illusionist or I'm finally figuring out that like all artwork; beauty is found in imperfections. While I have spent years as a personal coach and I've done a few motivational speaking events, I struggle with letting my guard down and being vulnerable. In my "year of yes" I'm letting down the shields and practicing the Japanese art of Kintsugi;the art of fixing broken pottery with gold, thus making the damage part of the beauty of the piece. I'm pretty good at getting others to see beauty in their "cracks"; it's time for me to see my own.

Let me back up this bus for you, it will help... I promise. You see, I've always been "sick". I was sick all the time as a kid and as a teenager. I thought for sure that I would "grow out of it" or something, I waited not so patiently and that day never came. I feel bad for my parents, I know they did the best they could with me, but no one is prepared for a kid that is sick ALL. THE. TIME. I grew up in a home of: you're not bleeding; you're fine, suck it up, tough it out, you're going to school unless you're vomiting, take some Tylenol; you'll be okay... there were colds, flues, strep throat, migraines, generalized body aches & pains- but invisible illness was not still not an acceptable answer. They were entirely out of their element. This is where I honed my "brave face" skills.

When my diagnosis of Endometriosis came in at 17, I felt this sense of relief; like I was finally validated in feeling miserable there was an actual name of my oppressor to curse. I started the battle with medication, alternative diets, pain management, surgeries... you name it and I tried it. Finally, around 19 they decided that I really didn't have a chance at having my own children, yet they still wouldn't take out the damaged, pain inducing organs.... because "someday I might change my mind..." Change it to what, exactly?...put on the brave face, power through the pain... don't let them see you sweat.

Through all of this I was also diagnosed with Cervical Cancer at 19. I was lucky, they caught it early. I had a surgery, took a couple of weeks off work and school, a round of antibiotics and some pain meds later, I came back from Spring Break with half a cervix when everyone else came back with a tan, tattoo and hangover....put on the brave face, power through the pain... don't let them see you sweat.

Ever persistent; Endometriosis was a 14 year, all-out battle of good and evil, daily pain, misery and torment that finally resulted in me finding a doctor that agreed I needed a hysterectomy. While this dramatically changed my life for the better it also opened up the door to all of my other "sick". I developed an infection because my stitches didn't dissolve properly, was treated with antibiotics, and then my broken shell manifested a glorious C-Diff infection that reared it's ugly head on me for over 6 months...I was weak, so weak that I struggled with everything. I weighed less than 100lbs (which is insane for my 5'5" athletic frame) and the whole time I put on my brave face and battled through. I worked; when I was allowed by doctors, I moved to a new state, I got divorced and I never let 'em see I was literally dying. ...put on the brave face, power through the pain... don't let them see you sweat.

It took me 2 years to get my body back and it was a hard fought victory to have some incredible boudoir photos taken of me for my 30th birthday. I was finally in love with myself. I marveled at the strength my body had; the trials it had endured and I wore my battle scars with honor. I was ready to talk about what I had been through... and I did.

...and then I got shot down with disbelief. I'm sure that you're noticing a pattern by now. Invisible Illness wasn't a viable answer in my life. Instead I was feeling incredibly shameful because I was feeling weak. Telling people about my symptoms always came back with the same response "...but, you don't look sick?" which made me question whether I was actually sick. "You're always so positive" they said, "there's no way that you are that sick" they said. So, I stopped talking about it and I did the only thing I knew how ...put on the brave face, power through the pain... don't let them see you sweat.

This last battle started in January of 2014. I got pneumonia and it kicked my butt... I did my best to slow myself down but, I worked 2 jobs for a reason and I was out of vacation time. I kept a low profile and tried to recuperate... I felt like I just wasn't getting better. After my realization at 30 that "I have endured so much, I need to talk about it" I felt like I needed to let the wall down with my new partner... this in and of itself was exponentially huge and wrought with inner battles of "shhh don't tell him that... he won't want you if you're broken... he's going to leave and find a healthy girl"..My amazing partner (that just so happens to work in health care) instead suggested I go to see a sleep specialist because I was SO.DANG. TIRED.  Turns out, I have Narcolepsy. I started medicine to manage my symptoms and was feeling pretty good. Of course there are good days and bad days. Some days I can't get out of bed and others I can run 13 miles... the terrible part; I never know from one day to the next how it's going to turn out. ...put on the brave face, power through the pain... don't let them see you sweat.

The fall of 2014 brought on a sinus infection that wouldn't go away, for Christmas I got a kidney stone and kidney infection which gifted me the knowledge of yet another antibiotic I am allergic to, an upper respiratory infection, an ear infection, another course of antibiotics, 2 weeks of steroids and bed rest... all I was missing was the effing partridge in the pear tree! It took a few months to recover from all of that fun. During all of this I started experiencing intermittent bouts of skipped heartbeats, chest pain and dizziness. ...put on the brave face, power through the pain... don't let them see you sweat.

By June I was full on sick again. This time I thought for sure it was Strep Throat. I also had a lump in my breast. I went into the doctor to have both concerns addressed. Luckily the sore throat turned out to be a virus. I immediately went to see a specialist about the lump and within 2 weeks I had surgery scheduled. A little insight into my coping mechanism- I organized a volunteer event for my non-profit to participate in about 4 days before the surgery, 2 days before the surgery I drove to Portland to watch my partner finish the epic Seattle to Portland bike trip, 3 days after the surgery we hosted out of town guests, 7 days later I was back at work... with a 101 degree fever. Medical would only clear me to go back to work if I promised to see my doctor within 24 hours to be looked at- and so begins the next 7 months... Thankfully, the lump turned out to be a benign fibroadenoma, I might get more, they might not be benign the next time...put on the brave face, power through the pain... don't let them see you sweat.

One would think that for someone that gets sick all the time I must go to the doctor a lot. WRONG. I have a deep seeded mistrust for doctors. Doctors don't like things they can't label, things that a pill won't take care of or things that aren't easy to find. Case in point- I've had mono 3 separate times; each a new infection. When you go to the doctor and tell them you have Mono AGAIN they get a little twitchy and defensive. They give you a big lecture about how people can only get Mono once because of an anti-body that we produce in the first week of the infection. The virus may reactivate on occasion, but you can't contract it again. WRONG. My body doesn't produce that anti-body, which I found out the second time I had it via an Infectious Disease Specialist- doctors never believe me though. That automatic dismissal is why I have learned to operate at a standard level of sick all the time. Why should I go if they don't believe me?

In the last 7 months I have been dismissed by 5 well respected physicians. I've had the following conversations:
Doctor 1: I think you have Chronic Hepatitis.
Me: How does one get that?
Doctor: Well, an at risk lifestyle; multiple sex partners or from recreational drugs.
Me: Ummmm, I'm an athlete, I don't do drugs and I don't sleep around. Plus my partner works at the hospital and is regularly tested... I don't think that sounds like me.
Doctor: Yeah, *laugh* I hear that a lot...I will order the tests.

Doctor 2:I think that you just need to focus your energy on thinking you feel better, not thinking you are sick.
Me: Are you telling me that this is psychosomatic or do you just think I'm a hypochondriac?
Doctor: Well, I can't find anything medically wrong with you. I think Antidepressants would help you.
Me: You know that I went to school to be a Clinical Psychologist, right? The only thing I'm depressed about is your quality of care.

Doctor 3:I don't know what else to test you for. I can't find anything wrong with you.
Me: What's my next step then?
Doctor: I don't know, I'm not sure there is anything to find. You can come into the office to talk about it if you want.
Me: No thanks, I will find the doctor that can find the answers.

Doctor 4: How did you even get this appointment? I don't see a referral here.
Me: I called and scheduled it.
Doctor: Why? I've seen your chart, I don't think we are going to find anything here.
My Partner: Seriously, you're going to just dismiss her like that? You're not even listening to what she has to say.
Doctor: Well I guess if you're really insisting we can do some more tests, but I don't think we are going to find anything serious.

Doctor 5: Why are you here? *puts finger up in the "hold on" gesture, then answers personal cell phone call in the middle of my sentence*
Me: I was referred here by my Naturopath because of my recent test results, and the cardiologist I saw this morning also thinks its a good idea.
Doctor: The disease they are referring you for is extremely rare, I don't think we're going to find that.
Me: So the fact that I am exhibiting almost all of the symptoms and I am a runner that can't walk up a flight of stairs combined with two rounds of testing is insignificant?
Doctor: Well if it makes you feel any better, I can re-do all of the tests.
Me: You mean the ones that I had less than a month ago? Yeah, no thanks.


My daily list of symptoms: 
  • increased blood pressure- regular is 100/70 and I'm pretty frequently over 130/80.. in fact, I just got a prescription for beta-blockers... the things that people with hypertension take to stop their hear from exploding out of their chests. Fun fact about beta blockers; if you have regularly low blood pressure and your insanely high intermittent suddenly drops back to normal after you take one you feel equally as crappy on the opposite end of the spectrum. Neat, huh?
  • random bouts of tachycardia- were talking heart rate over 120 bpm, regular is around 55-60
  • extreme fatigue- I come home and go to be at 4:30pm 1-2 nights per week
  • weight loss- since this spring I have lost nearly 30lbs- mostly by sitting on my ass because I'm too tired for anything else, partly because I have no appetite and everything I eat very rapidly comes out of my body in one form or another... yeah, it's not sexy.
  • my hair is falling out
  • my skin is dry
  • daily pain that could stop an elephant
  • I have headaches caused from: blood pressure, hormones, dehydration, sleep deprivation
  • oh yeah, I have Narcolepsy and can't sleep!! WTF? When your heart is constantly racing out of your chest like you're running from a heard of stampeding wildebeests (yep, just like the Lion King) it's really dang hard to fall asleep or stay asleep. 
  • I can't think- you know when you have had a few too many drinks or your kids wake you in the middle of the night and you struggle to form a sentence or can't understand simple sentences spoken to you... that's all day, every day for me. I think that this is the most frustrating aspect of this invisible illness; I have a degree in English, I am generally well spoken and articulate- remember above when I said I I was a perfectionist... well it's taken me 2 weeks to write this because I struggle to form coherent sentences with correct spelling. 
What I've been tested for:
  • Mono
  • Hepatitis
  • Pulmonary Embolism
  • Endocarditis
  • Hypothyroidism
  • Hyperthyroidism
  • Malaria
  • Liver Failure
  • Congestive Heart Failure
  • Early Menopause
  • Immunoglobulin Deficiencies- A, G, M
  • Lyme Disease (Ab)
  • Toxoplasmosis
  • Histoplasmosis
  • Coccidioidomycosis
  • Epstein-Barr
  • Cryptococcus
  • Brucella
  • Q Fever
  • B Henselae
  • Tuberculosis 
  • Blastomyces
  • Strep Throat
  • Cytomegalovirus
  • Syphilis
  • HIV
  • Pheochomacytoma
  • Carcinoid Syndrome
  • Systemic Mastocytosis

...I'm sure there is a slew of other stuff that I can't remember, but those are at the top of the highlight reel. We're still looking... the current focus- revisiting Lyme Disease, based on some genetic testing results that indicated a mutation caused only by Lyme.

Back to the point of this long winded ramble... I'm not sharing this to to gain pity or seek attention, I don't wan't to be a martyr, I'm not asking for forgiveness or acceptance. I'm doing the best I can and for the first time in my life, I'm okay with that. Those 4 words are been the hardest of this entire article. I'm okay with ME. 

I'm thankful for well meaning comments, I appreciate the offers to help; but to be honest; if I don't even know what's wrong... I really don't know how you can help. It's difficult for me to ask for help; but I'm finally in a place where I know that if I truly need it, I will ask. I promise. I know that I need to do better about sharing what's really happening with me. In preparation for that, if you are going to ask me how I am; be prepared for the honest answer. Some days it might be good, some days it might be truly awful. I'm not going to hold back or sugar coat it. If you're not all in; for both the beautiful and the ugly, please don't ask. I feel like I've been distracted by what I've been going though and I know I've slacked off in the relationship maintenance department. Since we are being real with each other here; I'm just going to say it. It's hard for me to concentrate on everyone else when I'm worried that I am literally dying. I'm not trying to be dramatic, when your doctors are testing you for obscure diseases and cancer every other week and you feel the way I do... it's not irrational. Because I am a "giver" down to my core, I feel like I've been being selfish and that has finally stopped. For the first time taking care of me is my number one focus. I've got to be okay with that. The best way for you to show your support? I need you to be okay with it too. 

Do I want to feel better? You bet.
Do I want answers? Every. Single Day. 
I want to be healthy (period). I don't want to have to decide on whether I shower or spend time with my partner. I want to go to happy hour on the fly. I want to run, hell; I'd be happy with walking, a race- at my pace, on my terms. I want to stop being thankful that I didn't have a heart attack on my walk through the parking lot before and after work. 
 
The thing I want most of all? For people to understand that appearances are not everything! Before you pass judgement, pass some empathy first. You never know what's happening in someone's life; you don't know the battles they face, large or small. 

Be kind. Share some love.

Monday, February 8, 2016

The Shitty First Draft

Curiosity is a shit-starter. But that's okay. Sometimes we have to rumble with a story to find the truth. -Brene Brown (Rising Strong)

Curiosity is an absolute shit starter and that's a fact. The truth is, I've been rumbling with it for quite some time and I'm just now ready to take action on it. For those that have followed along with my journey; this outlet is going to look different. It's going to be raw and messy. I'm not going to gloss over the middle anymore; you're going to see the process that gets me from "well shit, that just happened" to "okay, that's why it happened; what did I learn?". It's been almost 2 years since my last post and I've been telling myself for quite some time the following lines of bullshit:

  1. I don't have time
  2. Nobody reads this and cares what I have to say
  3. My life isn't exciting
Well the truth is: I've been scared. *whew* ...there I said it. I've handled some really heavy stuff in the last 2 years and some of the writer's block has been the shame of failure. I have FAILED at so many things. For someone raised in a "failure-is-not-an-option" house this is shameful, gut-wrentching painful, panic-attack causing, "shhhh please don't tell anyone" stuff. 

What I know now? Failure is what has gotten me where I am today. I have survived the things that I never thought I could and they shaped me into the person I have become. I am GRATEFUL for failure... crazy, right? Who says that? The person who has lived through all of this:

  • Providing end of life care for my Grandfather
  • A hysterectomy at 27- resulting from 14 years of Endometriosis pain
  • A post-secondary surgical infection that almost killed me
  • Divorce
  • Starting over
  • Finding my way
  • Moving back to the scene of the crime- moving back to the city that I was happily married in
  • Taking on a dream job that turned into a nightmare
  • Losing a job- being fired for the first time
  • Putting my heart on the line and being truly vulnerable
  • Providing end of life care for my Grandmother
  • Taking on a new career & starting over
  • Managing health issues that are, without a doubt, kicking my ass
  • Daily pain
  • Hearing from the best of the best that long-distance running is not in my cards
  • Finding balance, not perfection
  • Letting down my barriers and showing the "hot mess" to a room of perfect strangers

...quite the list, huh? That's just the highlight reel. The reason this is a SFD is that this isn't for you! It's not... this is selfish and unpolished, a literary pile of vomit from my heart and brain. This is clearing out the garbage- it's the janitor with with wide push broom sweeping up after a basketball game. I'm clearing out the arena to tackle that list above. 

Want to know a secret? Shame loves perfectionists and I will be the first to tell you that I am 100% a perfectionist, through and through. Okay, so maybe that wasn't a secret... this is, I was okay to let shame win. Yep, I was curled up in my little shame ball, hiding out in my blanket fort, being as still as I could be and hoping that the world wouldn't notice me. I WAS MISERABLE. I was exactly where shame wanted me to be. It took me taking a huge leap to break the cycle and muster the power to fight back against shame. 

Lately, I've been reading stories of struggle, heartbreak, resentment, pain, fear and loneliness; all from women just like me. I got so angry! How could I be letting shame win? I know that I am so much tougher than shame. It is time for me to be brave with my life; not only for me, but for these women that are battling shame on the front lines, for those that haven't found their courage yet. It is for this reason I am writing my SFD and putting it out there into the world... Shame can't win anymore, not with me; not with any woman! 

I'm going to openly tackle all of that list above, I'm going to work through it and show you the process; even the messy bits in the middle. If my rumble can help a single woman come to terms with the asshole in our brains known as shame; it's worth it. 

We're in this together and shame, you're going down. Pack your bags, I'm even willing to give you a head start. We're through. 





Thursday, May 9, 2013

Thank You

It's hard to believe that it's been a year and a half since I last updated my blog. It's not that I didn't have anything to say... I honestly didn't know how to put it into words. The last year has been a whirlwind of changes; some good, some bad, yet all necessary.
In January of last year I developed a post surgical infection from my hysterectomy and got very sick. I lost about 40 lbs and went though some very scary times. In the middle of all that my husband asked me for a divorce with the "it's not you, it's me" approach. I was totally thrown for a loop. I had just moved across the country to be with him, I was living in a strange city and struggling to make friends. I missed my family, I was struggling to give 100% at my job, I was so incredibly sick I could barely make it through a day. I put on my big girl pants and packed up my life and moved myself and my dogs back to Michigan (it's where I'm from originally).
I found a job pretty quickly thanks to a friend, I had a place to live until I found an apartment thanks to another friend and my parents were amazing for watching my dogs for 6 weeks while I tried to settle into my new life. They definitely don't call it starting from scratch because it's easy! I'm so thankful for those that helped me get through those first few months... I don't know what I would have done without you. R for being there the days that I just needed to be hugged while I cried, A for being my support and reminding me that I am loved, S for being the person that I could let it all out to and not feel judged, H for always reminding me who I am. Thank you Mamo for our down time watching court TV and Big Bang Theory, K for getting me back to doing what I love and J for reminding me that I can love again.
Ive been through some things that I wouldn't wish on anyone and a few that I think everyone should go through. I am learning so much about myself and life. I know what I'm made of, what I can tackle and what truly inspires me. Some days are tough and some nights are lonely but, I know I'm going to get through it.

Thank you everyone for being amazing! <3 love you!

Monday, January 9, 2012

Resolutions

Well, I moved to Chicago, IL with my husband and dogs in November 2011. It was 4 weeks after I had a hysterectomy, 2.5 weeks after my grandfather passed away and 2 weeks before I returned to work full time. This year I didn't celebrate Halloween, Thanksgiving (my favorite holiday) or Christmas for that matter.

I'm really struggling with the big changes, especially returning to work full time. I find myself struggling with the work/life balance in the opposite way that I used to. I more frequently want to miss work because there are so many things happening in my life that I feel are much more important. I feel disconnected to family and friends and it's frustrating.

In some ways the year off that I took in 2011 was the greatest thing that I have ever done. In other ways it was possibly the worst idea ever. I learned so much more about myself and my values, the things that are truly important to me. I realized that work, in the conventional sense, is no longer at the top of my list. Instead I value life's experiences more.

Tomorrow is my 1 month anniversary back at work. It also marks yet another week that I haven't done any work for myself. I have't painted in months... I feel the passion for my business starting to slip and that makes me so sad. I love expressing myself through creating and I need to make time to create more beauty in the world to offset the tragedy. I need to start working with another organization to make someones life better and through that act my own will be better.

I am actively searching for another job, I would love to be in the non-profit sector somewhere. If you know of a great opening that would suit me please feel free to message me!


My New Year's Resolution List:
*make time for beauty, serenity, love and compassion each week
*wake up with the goal to make 1 person's life better each day
*collect 400 pairs of shoes for Soles 4 Souls (beating last years total of 364)
*raise more funds and awareness for Susan G. Komen than I did last year
*register with RAW Chicago and get a show in before June
*make time to create at least once per week

Until next time, I send you into the world with the challenge to make time for beauty, serenity, love and compassion every week. <3