January 26 2018

Happy 3rd Birthday

 


Joebaby,
Happy birthday kid, three years old already! BIRTHDAY
When I was young I had this notion that the world owed me something, that my mere existence meant a power unlike anything else. Now I believe life to be fragile and fleeting.
It has been said many a time that people cannot change, but I disagree. You have changed me. Being your mother has changed me. Watching you with your brother has changed me. With you I can be a kid. I get to laugh at the rain, splash in the puddles, savor the “make a happy plate” dessert, and cheer at heroes slaying dragons. With you, I can forget the harsh tint to the world.
Sometimes life makes us uneasy and offers us bigger tasks than we feel capable of conquering, but remember little one, “tough times never last, but tough people do.”
Finding out about you led to some really difficult medical decisions. I honestly had no idea how anything would turn out; all I knew was that I was your mother and I would do anything to protect you. Know this, I love you and your brother more than anything else. I will never regret the things I have done or the choices I have made to protect you.
You might outgrow me, but I will never outgrow you — so let me hold your hand crossing the street, let me give you kisses, and tuck you in; let me be mommy a little while longer.  I can already see this fierce independence in you, a yearning need to grow up and be like Jack. You want for things you don’t fully understand yet.
If you learn nothing else from me, learn that it’s okay to be whoever you want to be. I will be as proud of you tomorrow, or next week, next month, even 100 years from now, as I am in this moment. You are my son and I love you!
Happy Birthday Joseph!
 
 
 

November 28 2017

Do you love yourself?

Silly girl,

They love you,

You just don’t love yourself.

-H.S.-

Experiences change people. Music, movies, books, religion, culture, likes, and even dislikes; it all plays a part in who you are.
Some of my experiences still embrace me, like a bad dream.
I wake up some mornings and feel the fear of my past. The sting of rejection. The loneliness of heart. 
The other day, while getting ready for work I was venting frustrations over the various situations the doctors haven’t been able to fix—mainly—my butt. Not to get overly emotional, but Jon made a comment that seriously pissed me off. Something along the lines of, “The meds helped…you just stopped taking it.”
Okay, the “meds” that worked caused my stomach to cramp up. It fixed one issue (sort of) while forcing other parts of me to stop working. In fact, I was crying in pain and bleeding more than normal during bathroom visits.
I made a choice, not him. Me. So then why does he feel slighted?
The diagnosis came 10, almost 11 years ago. When will people trust that I know and understand my own body? Especially when the disease crashed into me long before that.
I have spent entirely too much of my life being told I was making it up, faking it, or not trying hard enough. Hearing Jon sound like them–all of the people I have fought against–caused a visceral reaction.
IMG_5015
Even knowing the depths of his love and his genuine concern, I spent the day in a piss-poor, bitter mood.
No matter how much time has elapsed, I am still that broken little girl. That child, standing in a field outside her parents’ house talking to the cow next door. (I named him Prince and I still think about him from time to time.) He disappeared one day. I have always imagined he was sent off on some great cow adventure. I know better; I have always known better.
“Objects in mirror are closer than they appear.”
I am constantly in a state of unease, worried that any misstep will take me right back. That another surgery, hospital stay, ileostomy bag, or bowel resection is imminent. It hurts to feel this way; to constantly be looking over my shoulder for a danger that exists inside my own body, inside my soul.
I keep hoping that one day I will let it all go. That the walls I have built and fortified will come crashing down. I want the gray clouds of long ago to dissipate. I don’t want to fear the rearview any more.
I want…I want to love myself.
Love myself the way that others do.
 

October 16 2017

Practice Makes Permanent

These previous twelve days have passed in a blurry haze of rawness, exhaustion, and giving it my all. Tomorrow, if everything goes according to plan, I will have completed my 40-hour mediation training and will have taken a huge step in the process/commitment of becoming a state-certified mediator. The entire journey seems a little daunting, but I feel like I am making steps in the right direction. One of the things I was recently discussing with friends is how someone with a chronic illness is always forward-focused. Not to say we don’t linger and get stuck on the past, but rather that we always plan and think with our future in mind.
To explain further, Jon and I recently bought a car. We have talked about it for months, almost a year, actually. We wanted something weather appropriate, full family seating capacity, decent gas mileage, and with more of a physical appeal than, say, a mini-van. Although we had talked ourselves around and around, I was afraid of committing. I tried to explain to him that I spend 90% of my life in fear that I will wake up at home and fall asleep in a hospital. I continued on to say that I worry about what a poorly timed flair would do to our already tenuous financial stability, I worry about losing my job, and I worry about the insurance company making good on their threats to discontinue my treatment.
Naturally, Jon didn’t get it. I wouldn’t say he didn’t understand, he just couldn’t relate…which is actually part of why we work so well together as a couple. He is fun and lively; he forces me to live life and take it less seriously. Alternatively, my side of the relationship coin is to show him stability and the strengths of being prepared.
To steer back to my original and very convoluted story, I am excited about mediation presently, but also in looking at how it could potentially shape my future. If things take a turn medically, or the treatment stops being effective, and I have to quit working, becoming a mediator will allow me to work intermittently. Maybe not enough to support a household, but enough to bring a little something to the table without feeling like the burden I imagine I would become.
Mediation is tough and it takes real work. It guts you, it is emotional, and it is raw. A topic that I have heard repeatedly is that as a mediator you are not striving for perfection, but a sense of ‘good enough.’ It was framed as, Practice makes permanent. It really got me thinking about how I treat myself. I have always been extremely hard on myself, never feeling good enough, and never feeling like I belonged. Good enough though? Absolutely. I am not the best Suzy Homemaker that I wish I could be for the kids, but I realized that as a mom, I am good enough.
I often think that Jon could have fallen in love with anyone, but that he stayed or settled with me. Yet, that “good enough” thing got me introspective. I am good enough.
I am good enough. I need to let that sink in. I am a good mom, a good wife, and I have a good life.
Maybe I am not perfect, hell maybe I never will be, but I am good enough and that is okay with me.

October 1 2017

Rise Above

I have dubbed this month an awful month. There are two concessions: a possible author meet-and-greet and a few days home with family. Otherwise, I am bracing myself for a long and exhausting whirlwind of a month. Week one and two consist of a typical Monday-Wednesday workday, a 7:30am-4:30pm/5-9pm Thursday, and a nine-hour Friday/Saturday. All of this is done with a two-hour-a-day commute. Week three consists of four 10-hour workdays with treatment scheduled Friday, and a 7-hour drive home. Hopefully now that I am on the increased dose, I won’t flat line during week seven (my flex week) and ruin everything; especially given that job performance (I was recently promoted) and a certificate licensing me to be a mediator is on the line.
Jon always asks me why I spread myself so thin, which often leaves me questioning myself: Why do I have an incessant need to be everything to everybody? The only thing I can think of as the answer is maybe if I do enough, say enough, be enough, nobody will see me. The real me.
So, I’ll keep digging and piling more stuff up, piling and piling until I am nothing more than a hand with a shovel. When you look at me, you won’t see the autoimmune. You won’t see the girl with dark circles under her eyes from lack of sleep, the girl who cries in the bathroom after puking, the girl crouched in the corner of the break-room staving off the pain with silent prayers. You won’t see the girl choking down pills or getting bloodwork done every other week.
No. When you look at me, all you’ll see is the piles.
I would like to think I prefer it that way. Keeping everyone at arm’s length has always been my coping mechanism. I believe it easy to romanticize what you don’t understand. As a kid I never felt like anyone believed in me, and in some small measure I know that I will always feel that way. The bad things people say are often the easiest things to postulate in any given sense. That said, I know that I will swim through hellfire to prove everyone wrong about me and with any luck, I’ll prove myself wrong, too. There is nobody in this world that deems me a failure more than me. Hell, my body practically demands it and my reflection offers little more than mockery to the contrary.
I won’t let it win though. The girl, the other me…the disease. I refuse to let them win. I refuse to let them whittle me down to medical charts and unfounded critic. Some days I think Jon and the boys are my hypothetical smelling salt, but that is an unfair burden to place on them. I have seen with my own eyes what that kind of guilt and responsibility can do to a person. It is too much, a Herculean task of epic proportions.
I don’t know how or when, but someday…someday I will rise above.

September 25 2017

Short Post/Update

Despite all of the bad days, the near constant pain, the undistinguishable and the distingishable symptoms, I have good days too. Usually when a good day comes my way I do not question it; instead I dive head first into a project or an activity, knowing full well that my carefully stacked wellness is a contingent life-like game of Jenga. Each exertion is done cognizant of the possibility that my good mood can shift. It is important for me to enjoy the good days but to do so with an open mind.

After a pain-filled week we decided to take the boys to the fair again. Somehow the fact that it was a Saturday and the final weekend didn’t occur to me. The whole day was a little frustrating. I woke up moody, but mostly in good spirits. I was experincing eye pain, but I wanted to give the boys some laughter and good memories.
When we arrived, the parking area was overflowing. The lines were incorrigable and there were so many people my anxiety went through the roof…especially when I pushed the stroller to the ticket window and looked back to see Jackson playing with someone’s discarded cigarette pack filled with the butts.
The bathroom lines were insane and I was way too warm, depsite the 60-degree weather. However, despite all of this, it was worth it. Any day that I can spend with my family is a good day. Standing with Jon’s arm around me as we watched the boys “carnival ride” with giant smiles was a sight well worth the aforementioned frustration. 

It is hard to have an invisible illness, to constantly have to explain why I look normal on the outside while complaining of anything but normal insides. It is a feeling carried by isolation and discontent. 

In other news, according to my recent blood work my liver enzymes are still high but my red cell count was low, even by my historic standards. I asked my infusion nurse why she wasn’t concerned and she stated that I am anemic. I have been iron anemic for as long as I can remember, my point was that I was complaining of blood loss and then my results came back lower than MY low. The nurse suggested a multi-vitamin with iron. I have no idea if I am supposed to notice a difference, but I have been taking it for a week now. I have also drastically decreased my caffeine intake. Something I am both happy about and deeply saddened by. With my schedule I basically survive on caffeine and inappropriate humor. Nobody has died in the last week but if I continue to wean myself off of caffeine, I make no promises of future body counts. 

September 20 2017

Proof is in the Pudding

The proof is in the pudding. Did you know that proverb actually has a second part to it? William Camden said “All the proof of a pudding is in the eating.” The full quote changes the meaning, but I like the original. To relate, all the proof of an invisible illness is in the experiencing.
Since you cannot experience this for yourself (not that I would wish that on anyone), I am going to paint you a picture. Bear with me if you can; I am about to show my underbelly.
Saturday I woke up with a headache. It happens; it sucks, but I’ve learned ways to handle it and move on. This headache though wasn’t going away. If anything, all of my attempts to alleviate the pain seemed to make it worse. It didn’t seem influenced by sound or light, it just hurt. A radiating pain of the searingly hot variety. I tried to hang but I was snappy and agitated. My brother took the kids so I could try and nap it off. Mind you, internally I was wondering if it had anything to do with my recent blood test/results. Then again, my internal mode is always set to “over-anxious anxiety.”
By the late evening I knew I needed to get up and handle my adult life, but what I did instead was move all of my stuff (Hydro Flask, blanket, Netflix DVD, and phone) from the bedroom to the downstairs couch. Which–for the record–I totally counted as a win. I was up, I was moving, and I was in relative proximity to my brood. Then my stomach started rolling. I felt feverish and the headache was still unrelenting. In the span of a few minutes, my temperature soared, as did my anxiety.
I climbed the stairs and managed to get to the toilet. However, all I could do was crouch down and cry; deep, can’t-breathe-screams-of-agony intermixed with wails of true debilitating despair. I had no idea what my intent was when I got up, but I was driven to move toward the bedroom and when I got there I collapsed on the bed, still screaming and crying. In the background I could hear the boys asking what was wrong with mommy.
I see Jon start to transition from no idea what is going on to action mode. He immediately starts asking me what is wrong, what hurts, and then telling me to take deep breaths. At this point, my entire body was on fire and my head was hurting so bad I was literally wishing it would just explode. My breaths were coming more aggressively making it harder for me to breathe. “Deep breath, deep breath, deep breath,” Jon just kept repeating it over and over, telling me I needed to breathe in and take slow breaths out.
It took a while. The snot was pouring down my face and mixing with my tears making it hard to see, but eventually Jon calmed me enough and I was able to explain that it hurt to breathe, my head was pounding and I couldn’t regulate my temperature.
Jon had me strip down and get into the purposefully freezing cold water of the shower. I was still in pain, probably screaming (and just as likely crying), so I hunkered down on all fours and just shook as the water beat down on my skin. At first the water was nice but then the coldness seeped into my bones, making me shiver in new ways. I tried heating the water but Jon turned it back to cold and told me to drink the cup of Pedialyte. My hair was sopping wet, my face was covered in snot, tears, and drool, and I was doing everything in my power to handle the shock my system was experiencing. I can’t tell you how short or long the “shower” lasted, but I can tell you it felt like an eternity. Jon helped me out of the tub, wrapped me in a towel and held me while I cried into his chest. He whispered, “I won’t let anything happen to you.” I know it sounds crazy, but I believed him. I knew, even while everything was happening, that he truly had only my best interest at heart. He is the one person in the world that has seen the deeply scarred and damaged parts of my soul and still wants to help heal the ugly.
You might think that’s the end of my episode; I mean really, how much can one person handle? But no. After I was dried off, Jon helped get me into bed. He said he shocked my system and I needed to let my core temperature return to normal naturally or all of that would have been for nothing, so I sipped at more Pedialyte (nasty-awful-salty-sweet drink) and tried to keep my shivering to a minimum. (Difficult to do with wet hair, no clothes and a fan on, but I was doing my best to let my body reset.) The headache was thumping terribly, but I was just happy to have stopped crying. Jon was dabbing at my head with a wet washcloth and mother-henning me in the best way possible.
Extreme dehydration sucks.
After my temp started to come back up, and the sips of water seemed to go down smoother, Jon laid down to sleep. Did I mention I hadn’t eaten much since dinner Friday night? Because, other than a few rolls, I don’t know that I ate anything. Which is only truly relevant when I talk about the puking. Oh my gosh, the puking. Basically, it was one extreme to the next, all the while my head was pounding away. It seemed the more I drank, the more I puked. If I took slow sips I would get too impatient with pain and worry and would try to over compensate.
All night, I sipped, I oiled, I medicated, and I even applied Icy-Hot. By morning, I knew Sunday would be a lost day and by that night I knew I would need to call out of work (something I try never to do). I think the part I am struggling with the most is that the kids had to witness the meltdown. I know they are young but I want them to stay young, stay innocent and full of life, spirit, and imagination. I don’t want my illness or my actions to take away from them the innocence of what childhood should be.
Can you relate? Can you see the image of what this illness is? If so, I am sorry.

August 6 2017

Wolf in Sheep's Clothing

I have never been some starry-eyed waif waiting to be saved. In fact, I pride myself on being a fiercely independent gale-force wind. Maybe that’s reaching, but I definitely have enough wind in my sails to slam a door closed. When a problem presents itself that I truly sense I am unable to contain on my own, I feel like a failure of epic proportions.
Insurance: a true wolf in sheep’s clothing.
In life we all have dreams; it’s one of the big things we all have in common. Our blood hums with possibility, determination, and grit. “Strive for greatness,” “Never give up,” and “What the mind can conceive, it can achieve” are all platitudes people tell you to ‘encourage’ you to keep on keeping on. Well, my dreams have changed a lot over the years. In wild and drastic measures, no less. My dream for the last almost five years? To live long enough to watch my boys graduate. I have other dreams, too, of course; I want to see them fall in love, find passion, and be whoever they are in their bones. I want to be around for them, I want to be healthy, and capable.
I am saying all of this because of a letter I received from my insurance company. An unprompted letter of rejection regarding my current medicine, Remicade. (Now, before I go further I should mention, I think the letter has been handled. You can mark me down as skeptical, but I have to trust that it’ll all work out.)

Be that as it may, I went into a full-on panic of epic proportions. This cold sweat engulfed me like a surfer in the ocean. I could even taste the salt but that might have been my own tears. All I kept thinking about was why? Is the Board in charge of making decisions regarding my health going to be in the stands of whatever sport my children inevitably play? Are they going to take up a collection plate on Sunday or work a 9-5 to pay my bills? Are they willing to be available for the skinned knees, lost action figures, and the myriad of other things that go along with being a parent? Or what about the duties of running a household: laundry, dishes, and budgeting? What about Jon? Are they going to do all of the things that I do, when I lose the ability to do them because they aren’t willing to pay for the medication that keeps me functioning?
I also kept thinking about what it would mean to lose the insurance coverage. I am fortunate to have found a man willing to stand beside me no matter the cost. He would pay out of pocket without blinking. He would try and right the wrong in whatever way he could. He would be willing… but I wouldn’t. How could I knowingly throw a rock into our family pond and sit idly by while the ripples messed with everyone I love and care about?
I don’t know a term for what I feel; I would describe it as the chronically ill guilt, I guess. I feel guilty every waking moment. Guilty that I don’t do enough, say enough, and work enough, or know enough. Guilt that I cost financially and emotionally, sometimes more than we have. I am only human after all.
Some nights I lay awake watching the fan spin above me and listen to Jon breathe. I know I am one of the lucky ones. I have so much in life to be thankful for and I am. Yet, that never stops the anxiety from creeping in; the dread of what tomorrow might bring.
All of this has made me question my goals in life. I thought I had it all figured out, I thought I went to school to follow a passion, but now I wonder if maybe I should go back. I think I could do some real good for people like me, maybe grant writing or something within a non-profit. Anything to not feel so powerless.
July 31 2017

Mighty Mouse Juice

I have pretty much lived my entire life in fear of one thing or another. One of my biggest non-philosophical, non-existential, and downright irrational fears is mice. I have hated them and been afraid of them for as long as I can remember. So color me disgusted.
Last week I was reading up on possible liver problems associated with Crohn’s Disease and I found out that Remicade has a patient street name of “Mighty Mouse Juice.” The drug is literally made with mice protein. My brother started singing the Mighty Mouse theme song–and with my husband’s help–re-arranged the lyrics to make it: “They became Remicade….” I know, great support!
mighty mouse
I find it ironic though…the one thing that scares me the most is also the one thing saving my life. Now isn’t that just a metaphor for my life?
In other news, me latest liver blood panel came back flagged high–again. I submitted a portal on Friday to see what they wanted me to do next, but so far I have not heard anything. While waiting I decided to try to detox my liver. Sometimes I really think I have good ideas… until I have to execute them. In this case it was roasted dandelion root tea. I can assure you, it tastes as awful as it sounds.
IMG_2673
I did get a few good laughs with the tea though. One co-worker was insistent that we were going to get through this cup of sludge together and was very motivating. I have been forced to drink some pretty unbearable things in my time as a crohnie so I was punking out, majorly. However, my co-worker’s insistence was the key to success. I brewed a cup and the next thing I knew there was a ring of us standing around playing the sip-sip-pass game. Okay, it was more like them taking a sip and trying not to blanch too hard. One girl said it tasted good, but I had to ask her if her face knew that.  
I had another flair this weekend; they are all starting to blur together. I know I have said it before, but the pain isn’t my undoing. It’s the emotional stuff: my kids’ faces and the words they say. I actually missed donuts-and-park day this week. I have not missed that Sunday tradition in months. The whole point of the day was to let the kids know that no matter how bad things got, I would always be there. We would always have these days, these moments…and I ruined it. Or so it feels like.
June 17 2017

Father's Day

As Father’s Day approaches, so does the cracking of my artfully crafted exterior. I think about my dad often but I try to hide the pain I still feel. I know my sadness and unease makes people uncomfortable so I internalize it.
Only a few times a year do I let myself grieve or allow my pseudo tough-girl exterior to dissolve and just feel. My dad was a lot of things to a lot of people, and although it has not always been so, I know I can have my own opinion about him. It has taken me years to realize that despite what other people feel, my memories are mine and mine alone to keep.
He will always be the man who held me when I cried after I got into a huge fight with my first boyfriend. The man who, when I felt like my world was falling apart, told me to “never let them take my smile.” A man who, after losing a bet, got his hair braided and walked around downtown Waikiki with me.
Hawaii hair
For better or worse, he was my dad.
He taught me a lot. He showed me that some of the hardest lessons we learn in life are ones that come from the people we are supposed to love and trust. His actions both directly and indirectly have shown me the type of person I do and don’t want to be. Even in death, he taught me to love people like they could disappear tomorrow.
Nothing I say or do will physically bring you back dad, I know this…but I still search crowds for you. I play the songs you loved and pretend we are in the car together. On days I miss you most, I toast plain strawberry pop-tarts and slather them in butter, even though I hate them. For those few seconds, I am a kid again; I can close my eyes and have breakfast with you. I see your face when the boys smile, and I sometimes hear you when I talk. I think about what I would say if I could call you. I wonder if you would be proud of me.
Happy Father’s Day, Dad. I wish I could be with you today.
June 6 2017

Anxiety

Have you ever had a feeling or emotion you couldn’t explain? One that sounds illogical or insane even in your own head? You try to rationalize your fears and make sense of them; you tell yourself it’s because you want to understand, but really you just want other people to.
This for me has always been true of anxiety. I constantly feel swathed in uncertainty and panic. Sometimes my heart rate increases or my stomach churns and howls with a language comprised of anticipation and angst. I feel alone and gripped in an ice-block covered hand. The people around me are there but fragmented silhouettes of black and white. In my head I hear the chatter all around me but none of it comes in clear, like a facet slowly pouring into my soul. The ultimate disconnection.
I have yet to find the cure for my anxiety but I have learned ways to manage it. I hum to myself, make pro/con lists, twist the sleeve of my shirt, snap a rubber band, tap my foot, count to ten, or even breathe deeply. Sometimes these things help, other times I just have to remind myself that I have been through worse and that this too can be conquered.
Anxiety has kind of become a dirty word; a hushed term that gets swept under the rug or glazed over. Personally, I am not okay with that and you shouldn’t be either. I am writing this post because I know how easy it is to let your anxiety and fear consume you. To hide away and pretend that nothing is wrong. I know you feel burdened by your anxiousness and don’t want to put a strain on other people. Well, let me tell you; you are not a burden.
Whisper me your secrets and I will shout you my acceptance.