Tag: #shelovesmewell

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I have a new “bar” for self-love.

*my bar is that I may see myself as magical as my wife does, the great salve that continues to heal the many hurts*

In my office I am always talking to my Clients about my “bar”, their bar, our bar for ourselves. A simple expression meaning “what are my hopes and expectations for my one go round in this life.” Am I allowed them? Or does my functional dreaming stop at whatever happens to cross my path.

Passive living. Aggressive living. Is there something in between? If there was an in between perhaps it would be the belief that magic exists.

These thoughts of magic brought to you from having watched the new movie A Wrinkle In Time last night. when the stars and my hormones aligned to bring me one of these clear states of consciousness where everything just feels magical, and I somehow manage to not discount that or minimize its worth.

To be clear and fair about this process today I am bloated and bleeding so don’t forget in the beginning and perhaps always we are afforded glimpses, and clues, not handed our dreams on a platter. Today it’s back to the business of just making it through to the next magic moment.

Whether it was the fact that a pair of very adored clients have a new baby and I was blessed with the opportunity to hold him a couple of times now, and it broke my heart wide open. It broke open the pain of the negative pregnancy tests, and the joy of our new possibilities with IVF beginning this month.

Or whether there really is such a thing as destiny and if I squint just right I can actually see the threads of the tapestry being woven before my very eyes..

Regardless lately I feel magic in everything.

So I was thinking about this and realizing/ wondering if my will has led me to somehow be allowed to RE-experience the childhood I should have had, now. My willingNESS to still remain open to people and experiences despite the many anxieties and hurts that clawed inside of me for so long.

And could this realization further solidly my belief that I will create beautiful things in some way that will touch the lives of others?

People are just too beautiful to pass up.

People are “the bread and butter” of my life. They are my patchwork quilt that keeps me warm when I am cold and scared, they always have been. And I’ve always been able to find what I wasn’t given naturally in the way we all imagine it’s supposed to work.

Maybe imagining things as supposed to work a certain way is very limiting after all, and sometimes we just need to buckle up and take the ride.

This suddenly made me think of Space Mountain at Disneyland. I rode it with my Aunt Linda as a young girl, one of the few typical childhood experiences I was blessed to be able to have. You are riding a roller coaster in the dark, there are a few laser lights and things, but ultimately you are surrendered to your fate once strapped in and set loose on the rails.

I screamed with delight. I felt the lightness of being in childhood for those moments. I don’t know if she and my Uncle will ever know what it meant that they took me there at that time. Looking back now it honestly could have been a game changer. I wonder without that experience if I might have gotten lost to a world of rebellion of a variety I couldn’t come back from. A kind that would swallow me whole. I certainly had all the vulnerability for it.

But there was always people. I always turned to people. And when that need felt a bit more desperate and anxiety driven as life got more turbulent I ended up again shamed for this behavior by some of the people that mattered most to me.

Replacement family after replacement family. A foster care system of my own creation.

The thing is that now I got it so damn right, that I can’t even become tempted anymore to discount the path of getting here.

My wife came home last night, just after I had fallen asleep. She came in and she just curled up with me and told me how in love with me she is. She did it in such a way that clearly she had experienced the same magic that I had over the evening, even though we were towns apart. We tend to be connected like that, in some cosmic manner.

She just said it over and over throughout the night as she read to get sleepy while I slept. I felt a rush of pure adoration and love. She remarks to me when she sees me playing and light that she notices a childlike me. This noticing has opened me up to accepting that could be ok now. It doesn’t have to take the linear traditional route.

It’s ok to find someone who loves you this much, and to find out how to receive that love when it wasn’t a part of your model. I’ve journeyed through hell and back. Out of the dark wood, up the mountain, down into hell, and back out the other side.

So when I see a scene in someone’s creation from their imagination I know exactly that the magic is real and I can connect to it. I don’t need to be skeptical or critical or pick the movie apart for design flaws. I can just experience pure and utter love.

Movies and music give our truest selves permission to come out and play, and to wonder, and to dream….

I don’t know if there’s anything better than that.

My bar for myself and my life have become pretty high. There have been lots of critics, but my love story speaks the truth about holding out for what you are really looking for, and what you want and deserve, whether you are able to believe in it fully yet or not.

That part can always unfold….

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My breaking writer’s block, and my broken body

I am relieved to find that as I began to read this morning, all of my own words began to take precedence over the page. A lot of times that’s how it happens. I’m also a little surprised because I feel too weak to even write. Reading felt somehow more resigned from my usual 1000 watt glow. Just after I wrote that line I felt immense gratitude for my mind and my self. Not everyone has this drive. There’s a dark underbelly to it though, and that’s a whole separate blog post, that isn’t quite ready to emerge from the Koi Pond that is my mind. Picture an over populated one with the fish frenzied and panicky and you might have an idea.

I had a Crohn’s attack last night. I have to get this out first so I can move on from it, otherwise it will impart a tone of sadness or less sparkle to my post, and you, the reader won’t know why. It’s been so long since I’ve had one I almost forgot I have this fucking disease. I think the fact I am able to forget for periods of time is a genuine blessing, and I also attribute it holistically to the peace and happiness I have found in this half of my life.

The attack goes like this this time. They can be different, and come on without warning. I typically limit myself to one drink these days as alcohol works very poorly with my system. This fact makes me feel socially stunted in certain ways. I’m at times jealous of my pals that can “have another round”, and not pay some price. But I’m finally getting over my id, and being able to accept my special instructions. I used to get really down about it. Severely worried I could turn a fun evening or getaway into a pity party for me, and inconvenience people by needing to leave quickly and without warning. I’m overwhelmed easily enough in those situations, without my body rebelling against me as well.

I had a cavatelli pasta with lobster in an old bay cream sauce. I also mixed some of my friends salad with it, because it was just sitting there. She was selling solar at the dinner table, and I was reading a debut blog post that I’ve been anxiously anticipating. Not the present dinner I would, normally go for, but I match affect almost naturally at this point. And there was live music, so struggling to hear one another was annoying me anyway.

The salad was probably the nail in the coffin. But I’ve realized by this point it’s not fair to me to try and figure out what I’ve done wrong in the scenario, sometimes I’m just fine. But any creamy sauce mixed with salad usually marks death, but I had been spared for so long that I forgot. I had one martini with lots of food drawn out over the whole evening. So when I became very dizzy when I got home, I couldn’t understand what was going on. My heart began to race and I thought maybe it’s just exhaustion let me lie down.

Next thing you know it’s 2 am and I wake up with my heart beating around 120 bpm, feeling like my stomach is simultaneously on fire, and also being squeeze and writhing like a boa constrictor trying to make its way out. I break out into a sweat all over. I barely make it to the bathroom, and while I’ll spare you the more gory details, the fact that much of anything can come out of one human made me actually feel like I might die. I felt as if all of my insides were being purged, not just the contents of my bowels. It hurt so excruciatingly badly that for a few moments I debated calling for my wife (what only to disgust her and embarrass myself, what could she do anyway), calling an ambulance, and then went down the path of wondering what they could do or would find. It started to radiate all through my back, aching, twisting, and the sharp chest pains that used to send me to the ER.

After a bout concluded and I was given sweet relief for a few brief moments, my heart rate would be down in the 70’s and I would begin to shiver violently. I got back in bed with my wife, she was loving, covering up my cold parts and becoming comforting, rather than annoyed she was dead asleep. She is a blessing. She asked if I was ok, I said no, but I refuse to begin panicking because once that starts it’s really hard on my body. So if I got her all up and concerned I would feel even more anxious.

I was hoping I could settle into a coma induced rest after that. A sweaty, tangled, dehydrated mess, thrashing between hot and cold. But then I heated up again and felt as if my face was burning, and my heart was high again. It was time for round 2, 3 came later. And by the time I went to sleep I know I was dehydrated enough that IV fluids would have really helped. I used to feel safe at the hospital and like they would be kind and comfort me. After so many experiences and them not believing you (before diagnosis) I’ve had such poor treatment at times, that I will be on deaths doorstep before I go.

As predicted I woke with a monster headache, squeezing and pulsating behind my eyes. And a weakness that could only be described as feeling like a corpse that has been summoned on All Hallows Eve. A lead block could have become mobile easier, but nevertheless I am a slave to my writer’s mind which wakes promptly around 6 am and will not stop yammering until I get it something to do.

So here I am in my beloved bath. I was very careful this am and even thought of skipping it, as losing even sweat at this point could probably put me in a life threatening situation. So the water is tepid, and I pre-gamed with slowly introducing fluids, a banana; a couple crackers and a Tylenol awhile before. My head is still pounding, but after being through hell much of the night, the water soothes my screaming joints, and cleans the stress and suffering off.

This seems so unfair my inside self throws a tantrum, the outside self unsure she can even make it out of the tub, let alone move or make her head throb worse. I should only feel like this if I were irresponsible and drank a ton and am hungover. Who gets the hangover without the party. The self pity is a seductive mistress. If this went on as it did before diagnosis for weeks, and any food became Russian roulette, perhaps it would get me again. But it never helps. I’ve learned I just have to care for my body better and be kind to myself when this happens. To not become enraged at the time it took from me, especially in recovery. A vibrant hyper strong woman reduced to barely being able to pick her head up.

I just go back to how blessed I am in life and love, and believe it will pass, rather than running all the scenarios and what if’s as I used to. This one snuck up on me so stealthily though. I am sad and hurting, while also trying to hold to the determination I have, and joy I feel writing. I must give myself permission to lay my truth on the page, and not believe that I needed to be able to whip up something witty and charming, to be able to take up space in the world. To not fear others as me seeking pity. I am seeking solace in the act of writing. And if one soul finds this kind of determination inspiring then amazing. If not I still have these thoughts written down so I can see myself in a compassionate light. I just want to hug her, and this was not always the case.

You see here is what’s been happening in my mind and my heart. First, I didn’t know I would spend most of my post on this, I expected to gloss right past. So this post shows me how much room my feelings around having this disease need, and how cathartic to write my truth as I’m experiencing it.

Truth be told whether it’s wanting to make sure I’m determined, or whether it’s another aspiring writer’s courage, it looks like my current writer’s block might be broken. Maybe yes, maybe no. The block itself I am recognizing has been caused slightly by the all consuming nature of trying to conceive. That’s actually what I meant to write about. How I can hardly think or focus on anything else. How even if we don’t talk about it, or take the advice of others “just don’t think about it”, wouldn’t that be nice.

It hangs in the air as if it’s one of those machines that freeze everything, but myself and my wife. Our journey is in movement, and the rest of the world is frozen. And I can’t move or breathe until we get that positive. And I can’t even know how I will feel, how she feels, how my family feels, because we are experiencing a great in between right now. Right in between a before and an after.

But you know where I’m not anymore? Purgatory.

I’ll be happy everyday for the rest of my life for this new in between. And I’ll take what comes, with as much grace as my fragile human heart can muster, including the ambiguities of this disease. Because love is my lighthouse, and no matter how rough the seas are, I can always find my way back to my heart now. We are not separated.

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An Open Letter to My Children before Our New Adventure.

To my first born children, before this new addition rocks our lives.

Tyler I remember when I finished my Master’s Degree how vehemently you asked that I not pursue my PHd, which turns out is the best decision for us anyway. The point though, was you wanted your mom back. From all the school, from all the stress, and from being inside her head.

I know you all do.

And here we are about to bring a new life into this world. It seems insane sometimes doesn’t it? If things at times seem so hard now why? If you’re so stressful (how you might feel sometimes, not true) and mom is so stressed, why have another!? You must wonder about this at times. I know Court and I have.

Why with shootings, and so much evil, and already what can feel like not enough to go around, why bring another? Note: we have so much more than enough already in terms of resources and love.

You must all wonder some of these things, because Courtney and I are often talking about all the aspects. And you need to be able to share your feelings too. Even the scared ones, or ones that might not be easily received. Because this is how we sort out our feelings, and truer realizations rise to the surface after.

No truer words will ever be spoken than: I loved you first and you have made me who I am now. Every part of me who you watch loving this baby well, is who she is because of you. Courtney has me now because of you, and I have her now because of you.

If it weren’t for you I wouldn’t be helping people. You give me courage and strength. Your unconditional love healed so many things in me, when I didn’t even know that was possible. When I didn’t even know it was happening. I thought I was barely scraping by, but it turns out I held the key to happiness in my pocket all the time. I have only to look at your faces when they light up with passion, to know that.

I’m everything I am because you chose me as a mother. I’m beginning to believe with some mystical unknown force that we choose our parents to provide the tasks we need to fulfill our destiny in life. This happens without us knowing, but I bet it’s true.

And I believe this baby will choose us to be it’s family. Because with every new adventure we are also healed you know? You can’t watch unconditional love and joy, the kind babies possess, without being changed. Being touched by that kind of love has transformed me over and over, and you will always have been the beginning of that.

You are the heart of everything I do, never separate from me, the way it’s easy to believe. We aren’t loose particles floating aimlessly in the air, how I felt at one time. We are the roots of a great red wood tree. We will go see them someday. (In California). We are intertwined, strong, safe, sacred. We are growing things that will be important to the world, that are already.

I want us to talk about our feelings about this adventure as it unfolds. I want to create space for your fears, the way Courtney does for mine. Because it heals. I want you to watch how I was with you as a mother when you were little and know how loved you are. Know that I held you just as tenderly. And to watch Courtney experience the blessing of becoming a mother. How it grows and changes her heart the way it has mine.

I want you to have these experiences, closely intertwined with a family that loves you with all their hearts. Because that’s what you have, and I realize more and more that’s what I have too.

All my love,

Mom

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My Journey with Crohn’s Disease

I write this first and foremost for those who can relate. My fellow IBD warriors, and I write it for myself so I may find some catharsis.

-To Deny my Own Experience was a Part of my Survival-

I have Crohn’s Disease. I was diagnosed in August of 2013, one year before I graduated with my Master’s Degree from Southern Connecticut State University. The journey leading up to my diagnosis is a memorable one. I was constantly going to the hospital for heart palpitations and chest pains. Sharp sharp chest pains that felt like the ending of my life must be immenent. If I walked short distances or even began mowing the lawn my heart would beat so hard I could hear it in my ears. The other thing I remember was the extreme fatigue. I felt like a lead block, and that even moving across a room or getting up from a seating position felt like a huge task. I had attacks where my face would get very red and hot and feel like it was on fire. My hands and feet would often tingle or go numb. My head would also throb and I would just feel absolutely awful. My heart would race and I would turn clammy and feel panicky. I thought these were panic attacks until I realized after I went to the bathroom the attack would soon after calm and I would be left freezing cold, lips purple, and shaking like a leaf… barely able to hold my body up. I would have night sweats and migraines. What I would later realize was a depletion of B-12 would create an anxiety like you cannot imagine. I wouldn’t even go somewhere if I didn’t think there was good medical care nearby. I got to the place where I almost wasn’t even living anymore. I had an important therapeutic journey that I hope to make a post about, that helped with this.

Now is any of this sounding like Crohn’s Disease to you? I did not have frequent bouts of diarrhea. Though I will say the way it does effect me is when I am flaring and often with no rhyme or reason things “go straight through” if I don’t get to a bathroom immediately I definitely will not make it. There is no “holding it”. And in fact much to my great embarrassment I didn’t make it last week at my office during my last client of the day. I literally had to say I had to go to the bathroom 10 min before the ending of the session and I had been putting it off thinking it was almost done. Needless to say this situation ended up extremely uncomfortable. Mercifully there was not another person afterwards. It isn’t only my ego that is wounded during an episode such as this, these attacks come with extreme abdominal pain and exhaustion afterwards.

I had gone to every doctor imagineable: Neurologists, Cardiologists, Orthopedics (oh I didn’t mention the extreme joint pain), Naturopaths, General Practioners. By this time I was beginning to question my sanity, and was often treated like a hypochondriac. One of the worst aspects was is in my natural make-up it is very important to me to not be a burden and to “tough things out” so I denied my experience even to myself, and I still do this. I am in deep denial of my disease. This may be the most difficult aspect. And up until this point it has been easy to deny because after many nasty medications (including steroids), Humira put me into remission in 2014….. until now. The beast is rearing its ugly head again, and this will be an entire journey of emotions to manage it I feel. You see I have a relationship with this disease.

Let’s think about this word for a moment DIS-EASE. Whoever coined this term is absolutely brilliant there is no better way to describe. Feeling all of these odd little symptoms, even if it isn’t an issue of some extreme suffering every second, is distracting. This is probably one of the most painful parts for me. Someone who already has a hard time focusing then has this on her mind as well. It feels like it immobilizes me, taking over my mind space as if an alien has invaded and I am no longer my own. THIS is the most painful part for me. I become distracted and lost inside my head and my pain. Trying to be strong for everyone, not wanting them to worry about me. Trying to stay positive and have a good attitude, because that is the only choice. And when I crumple with exhaustion…. I have the awareness of how unpleasant I become. It is heart breaking.

Today I am writing about this because slowly, ever so slowly, the symptoms are creeping back up. Now since I was diagnosed I went through a whole wave of emotions. Relief I wasn’t crazy was quickly replaced by terror of the true reality. My mother has Crohn’s Disease and I watched her bleed constantly, have surgeries, vacillate between heavy and so thin you could see her spine. I watched her blow up like a balloon on steroids, and then shrink like a skeleton. I watched her suffer. And this whole situation becomes the most confusing because it was always her reason to never become a mother. She never became a mother. I think at this point in my life I know that she wanted to if she could have. I do not think she was capable. But for so long I thought it was the disease doing this and I felt so strongly that I wanted to care for her and fix her. Thus a lifetime of confusion of learning how to be cared for, and that I deserved that, and sorting out where Crohn’s Disease and mental illness collided and divided. Sorting through the mess.

So my relationship with Crohn’s Disease is a tricky one because it is also an emotional trigger for me. This being another one of the most difficult aspects. 

So today I sit and write about this topic close to my heart as this will thrust me into another period of growth. I will be tasked with handling the emotions and the physical aspects of this. A benefit of this coming back the way that it is is that I can finally know it wasn’t just stress, I couldn’t probably just fix it naturally (though I debate this a lot), it isn’t something I have caused myself or somehow my fault, and it is VERY REAL. There was some confusion with my diagnosis. I was in my Treatment class, one of my last in my program at Southern, and having the sharp pains. I ended up going to my doctor who pushed on my stomach and I nearly jumped off the table. She thought I had appendicitis and sent me to Advanced Radiology. Already feeling sick I had to drink 2 large bottles of barium 🙁 ICK. I walked around for an hour trying to distract myself: listened to Tina Fey Bossy Pants on audiobook. I can still remember every single thing about that day. Each moment. I remember the sounds, sights, and smells. I remember everything floating through my head as I walked around and around the building outside to keep fresh air and keep from throwing up the solution. I got a call a couple of hours after the test and they said that they couldn’t be sure but they think that I have Crohn’s Disease. I had 7 centimeters of blocked and inflamed terminal illeum. This is where my DIS-ease resides, right where I absorb my nutrients.

My GI later called me back and said that all of my tests came back acute and not chronic so that perhaps it wasn’t Crohn’s afterall. I was so relieved. She later reneged this and said that given my history and results of my colonscopy I definitely had it. This small piece is very important because once I was feeling better I tended to be concerned that I was taking a medication that could kill me, and cause all sorts of other things, and what if I didn’t have it? I still can say I have been unsure. At the time I was having a lot of stress in a relationship, a lot of stress with trying to balance school, work, and internship. A lot of stress as a parent. A lot of stress financially. A lot of stress overall. So I was SURE that my stomach issues were caused by stress and once I got healther mentally that perhaps that was the main key. It obviously is highly correlated with Crohn’s.

So here in the present after 4 hears on Humira (which terrifies me) I am beginning to flare. I have little symptoms still. Sometimes I’ll wake up with nausea or be extra tired. I used to be afraid they would become a flare, but then I realized, or now I realize for sure they were not. Because present moment finds me knowing in my body that I am flaring. I went and saw a movie with my person a couple of days ago and had an attack. My heart rate nearly 100 bpm while sitting in the theater, just sitting. My face red and hot and painful. I tried to hold ice on it for relief. It was not very easy to concentrate on the movie. There is no warning on these attacks they just come, and they suck the life out of any activity.

I woke up this morning feeling totally wiped out, every single part of me. My joints feeling swollen and in pain, my head throbbing behind my eyes, and just icky overall. It is so disheartening to a determined spirit. However I am a fighter. I have always been a fighter. And the second I become engaged in a session in my office doing what I was made to do… for those hours of the day I forget how badly I feel. I am so very fortunate for this. I have created a career for myself that so naturally commands my spirit and presence to attention that everything else becomes smaller. Even my DIS-ease. I refuse to be defined by this monster that rages behind every activity and dream of my life. I REFUSE.

So here I am today on the brink of what could be a very exhausting journey to relief again. Though I am delighted to have a career that does this, by the time I come home I crumple. My life does not have room for this. I don’t want to be irritable and cranky with those I love the most. So then comes the next aspect of the fight. Figuring out the best treatment. There are so many overwhelming questions, and the stakes are high. Do I go up on my Humira to weekly (this terrifies me)? Do I start steroids (also not something I want). Do I attempt to kick this as naturally as possible? This is romantic and I like the idea, but the effort it takes is unimaginable, and my GI would argue. My inclination is natural and holisitic, but my natural background is Western Medicine and it tends to be what I lean to trust. While you can read beautiful articles about how people have healed themselves (see Dane Johnson I’ve been admiring him lots lately and my person did get me all the ingredients for the elemental shake), my GI warns she has seen many of those appear as if they are doing really well for a long time, and then end up with a colostomy bag. A deepest darkest fear…. so I have to make big adult decisions, ones that effect my entire family, and ones that can leave my life hanging in the balance.

All of this is primarily invisible to the average witness of my life. This is why folks to be careful the things we say to others, or the judgements that we make. I am quite sure I am the mom who is talked about for taking more resources than I give within the PTA and in the soccer clubs. When I lose lots of weight due to being sick, well meaning folk congratulate me, having no idea of the daily battle I am fighting. Note: I no longer pay someone a compliment on their physical appearance, unless perhaps it’s you have beautiful hair or something. Never about their weight though. There are million other compliments you could find about their personality.

Having a disease like this changes the way that you live your entire life. I already felt like I was trying to outrun the clock on my available years to produce work that touches the lives of others. Now this process is just accelerated. So in my personal world I have little time to keep up appearances in any way possible. I am already exhausted I cannot be further exhausted by concerning myself with surface level interactions, or being concerned with what others think. And yet…. as a highly sensitive person I will always be aware of each of these things, be aware I live very differently (or it seems so) than others. I am aware, but I literally run out of the resources to give to anything that saps my energy that is not terribly important. So I live in a different and new way. In this way I am thankful for my DIS-ease, because it allows my life to be more rich in genuine interaction.

I live to turn my pain into my passion, and to share with others who are seeking this how to work towards it. Here is another piece of my story. I hope that you get something out of it.

My greatest strength is those that love me so well. It is during this time I think often of my friend Danielle, who came with me to many of my tests, and who was a rock during my time of intense FEAR. She is always close to my heart even far away. Her love for those close to her practically seeps out of her pores, and during this time it was a warm blanket for my soul. I can’t imagine having gotten through that time without her.  It is my wonderful person and my family that keeps me above water, when the weight in my heart feels like it will sink me. I am grateful every single day.

Oh and practical helps are long epsom salt baths with aroma therapy, ginger tea, hooded sweatshirts and comfortable clothing, and snuggles. <3

Christina