Tag: #flare

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Hamilton: What will our play be called ?!

Thank you for seeing me in this way, for delighting in me and in us. It has literally saved our emotional lives. We had our physical lives before you, but our emotional ones are taking such beautiful shape now. And I want to write about it. I want the world to know your bright love. And I what we have created here. 

The image suggests perhaps a playful post about our experience in the city. Wouldn’t that be a more pleasant read ? Perhaps it would, but it wouldn’t be written by me then, at least not tonight. 😉

This blog post is a letter I wrote to my wife tonight. Whether or not all things are meant to be shared I think there is always a power in it for someone. This letter bled straight from my fingertips, it fell onto the page in waves of truth that couldn’t make their way out fast enough. A catharsis. Isn’t it always. If someone else has a different experience with those words who am I to stop them.

Clicking publish has always been an act of bravery…. one I never gave myself much credit for. Warning it begins with graphic Crohn’s Disease material exactly as I experienced it.

I had a stomach episode tonight unlike anything I’ve ever experienced. I thought I was going to have you have to call 911. I almost screamed for you. Literally. I had visions of me passing out and dying on the toilet. I woke up doubled over completely, and I mean completely. I hobbled to the toilet. I didn’t know if I would vomit or faint. I felt like all 3. I felt like I was going to have to poop but didn’t know what thing would come first. It felt like I was being ripped in half. My shirt was completely soaked, completely, and contrary to the scary fast heart rate I will have usually during an attack my heart felt like it couldn’t even beat, it was low 50’s. 

I just held on and tried to breathe deep as I could through the waves of pain and head swimming until finally I pooped literally probably 3 toilet bowls full. It wasn’t all at once. First was getting the hard part out, and then a ton came. 

By the time I was done I was left shaking and freezing and now I’m more wiped out than you can ever imagine. I just can’t even quite describe the pain.

A couple of things happened. One, I felt a tremendous wave of compassion for V and guilt at not feeling more present. It’s like I can’t weather watching her suffer and I must because I’m mom. What a confusing thing. And two, intense fear that having not taken my injection even for a week has thrown things into some terrible state with my health. What if?! And what if V is in for a lifetime of chronic suffering with her tummy that impedes so much of her adventurous self. My god that will break my heart. And then that I really do love my kids moment. Well of course I fucking do?! How could I ever be so unkind to myself, ?’ To not give myself this benefit of the doubt. 

And then I think of the good thing that I’ll make sure she is safe and supported forever. Never scared she won’t be able to support herself. And then the realization that I’m a steadfast supporter and provider and that I’m creating / have created that from scratch. 

And this is literally what a profound RE frame in thinking looks like. I’m strong and proud and safe and I’ll keep my family safe, not some impulsive person hanging by a thread.

I’m creating something beautiful in myself and for others and it’s my story. My legacy. What I want people to say about me, when they tell my story like Eliza did for Hamilton. What will they say?! We all wonder what people will say.

This makes me think of you: do you know all anybody says is nice things about you?! I always wanted to be that person, but I make too many waves, take too many risks, and don’t think enough about how I’ll make someone feel. You think too much, and I not enough. If you take us both you have the perfect person 😉 boastful? Perhaps. 

I make people uncomfortable, but do it with good intentions lol. Don’t they say the road to hell is paved with good intentions;) I make people uncomfortable by pointing out what is so readily visible to me, that for others it takes them a lifetime if at all to notice. A gift and a curse. 

I wonder if V felt a fraction of how I felt just now. If she did I feel terrible for her. I’m gonna root around in your magic bag of goodies, the bag leftover from our dead dreams (to be dramatic and truthful) and see if I can find some life giving electrolytes in the form of Gatorade to settle this tummy. It’s feeling like knives are raking it currently and I can’t be out of commission this long. 

If anything happens to me babe please tell my story. I need my story told. The need is getting fiercer now. I need people to know how hard I fought just to be ok on a daily basis and my kids to know how strong their love makes me. They are the fuel to my fire, and everything that makes me the person that I am.

Every person I’ve ever helped has them to thank. 

And I have you to thank. You’re such a source of comfort to me. Speaking of…. I’ll need to restock our sick supplies. We were so fortunate to have all these. Though the reason we do and they are unused is still excruciating. 

Babe I know your process is different but please know that if this didn’t happen I might not in some really profound way have truly known how much I want it. How I want to enjoy the tiny new life that we create rather than ever viewing him or her as a burden. And my life has already been so heavy so long, any small thing sometimes does feel this way. But in part due to experiencing this loss with you, I know even more profoundly how much each second even is worth. 

I do in a fucked up way feel it is meant to be this way. This sense that everything does happen for a reason, and not that that’s just something we say to make sense of things when they are too fucked up. It makes me believe in destiny and magic. 

Does that mean we couldn’t have done without this toll to our hearts, this wound, and these scars… of course not. 

But life would not hold as much meaning without the whole picture, the whole journey, and my life now is beyond filled with meaning. 

While I don’t plan on going anywhere soon, I am satisfied with my life right now. I need you to know that. I don’t regret for me or be sad for the rest of my unloved life ever, because I have lived it to my fullest already. I do want more of course, immense amounts more. But if it wasn’t in my cards I didn’t miss a thing. I knew exactly what I was doing. 

I want you to find the same feeling, but in whatever way Or path that’s meant for you. That’s my dream for you, never give in to self defeating thoughts, ones that lack compassion for your full journey. 

If you did ever lose me I want you to live on for me in the way I would have. Carry my legacy and be for my kids what I would have been for them. You are up to that task. No one is as well as you or I wouldn’t have picked you. They will need you forever. 

I don’t plan on going anywhere, but we never plan for that so I want these words down. I don’t care what laws or rules or fears or whatever. We have something very special here and blood relation has nothing to do with it. We must trust that. You are an irreplaceable part of the kids healing now. You’re already written into the story. And I would never want to let you be snuffed out in the event of my demise. And anyone who would try would do so out of ego or pride etc, finally able to have their kids back from my evil clutches you know 😉 but you know better. 

You’re the best thing that’s ever happened to us. Yes little ol you, it’s true. That’s a truth. And it couldn’t be without you being so much more than you see when you look in the mirror. That distorted perception is your only enemy, it kills more dreams than a semi-automatic with unlimited rounds. 

I hope my kids will delight in my letters someday when they are old enough to read how my mind worked. Find, keep, and appreciate them all, because they are who I always really was inside and kids know so little about that.

I’ll never know much about who my parents really were inside, so much is a mystery, especially my dads side, and my mother’s, a tragedy. So for them to have this insight. To know my mind intimately. Incredible.

Wow so all this feels like a product of a near death experience. Listen honestly. It may sound dramatic, but this episode was no joke. And all this sweating and gross (being on prednisone and scared) the past couple of weeks has been really humbling.

There is a level of acceptance I am at, that wasn’t there before. 

My disease has carried a large piece of denial for the longest. I wasn’t willing. I’ve been in as much denial of it as I have how damaging my childhood was to me. I am reaching a stage of acceptance now, and it’s making me so much stronger. So much more at peace and strong. Someone that you will feel proud and safe to have a baby with. Someone stable that will enjoy that adventure with, not resent it, or fear it, or feel guilty about it because I already have kids.

That is at least the take home I’m recognizing from this tragedy. 

I will get to move forward without a doubt in my mind, and for me, that’s like having rebuilt an entire nation after its downfall. I’ve been a shaky entity bordering on panic for as long as I can remember, to be emerging this strong, still, solid force of love and compassion is unbelievable even to myself. 

I am surprising myself a lot lately. The strong I always identified as prior was a sort of forced kind of strong, a necessary one. This strong now is the accumulation of weathering storms with a sense of grace rather than a frenzy or a panic. 

It’s a strong I am satisfied and proud of, not one thrust upon me without my consent. It’s a soft kind of strong, and I can’t wait to hold our baby in these new arms made of this.

Every time you grace me with your vision of seeing the loving child inside of me. I can see when you see her, I can see her too, and it brings powerful healing. You bring that to me. 

Thank you for seeing me in this way, for delighting in me and in us. It has literally saved our emotional lives. We had our physical lives before you, but our emotional ones are taking such beautiful shape now. And I want to write about it. I want the world to know your bright love. And I what we have created here. 

What if someone else could find this place (when they couldn’t before) because of our story? Or was able to believe in their dreams?! 

Bliss. 

My tummy has burning remnants of the suffering I just went through and I can’t even be bothered to focus on that. I’ve too much shit to do with my one life. Thank goodness because otherwise I’d crumble into a little ball of stress and worry and take days to recover. 

I don’t have days anymore to spend in that way, there’s too much work to be done.

Every word on every page for every day of my life…. are for you….

Now I am going to curl up as close to you as I can and let your breath lull me into a deep relaxation, and help the pain melt away. 

All the love in my heart 

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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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The all consuming nature of chronic illness

It’s been a weird couple of weeks. I wonder if it’s something in the Universe and others have felt this way as well, or if it’s just unique to me? I feel like when I haven’t written (on here) in awhile, I need to find my way back to my writer self. The muscles groan and protest, as if they are saying “you can’t just come and go as you please and expect us to function, this is a commitment. That’s how it feels anyway.

I’ve been consumed in not feeling well lately, and exploring the emotions that arise here. Lots and lots of anxious thoughts, and worst case scenarios. Probably not helped by the fact that I recently saw a campaign to raise money for a woman with stage 4 lymphoma. The woman was someone who traveled in circles of friends of mine at a significant time in my life. During my newly being “out” as a gay woman phase. I knew people who dated her. I hadn’t thought about her since. And here she is with a wife, two adorable children, and cancer.

As humans we protect ourselves in a variety of ways. One of those ways is a powerful, fully operational form of denial. It is constantly present. This idea that could never be you. The less degrees of separation bordering you from a truer realization or your fragility, enter more anxiety. I often function by thinking thank goodness that isn’t me, and quickly busying myself with a protective layer of every day life that holds no room for morbid thoughts. But I am the type of person who possesses a keen awareness of the whole truth and nothing but the truth, as much as my human mind can comprehend. Often I wish I wasn’t, because then my mind would not be able to drive me as crazy with its frenzied thoughts of madness. To live fully is also to be mad I think. Mad with desire and mad with fear. Because if you know how much true beauty there is to be had in even the simplest of moments, you also know how fleeting those are. Always outracing an invisible force, that only I seem aware of. Or only I appear willing to acknowledge, and when I talk about it frankly I know the darkness in my thoughts frightens others. It’s like we know but don’t say it. You’ll jinx it. What superstitious creatures we are.

The first of the not feeling well began with some odd pain in my upper back, and extreme fatigue. I remember laying with my partner and feeling the first 2 fingers on both my hands be sort of numb and tingly. This driving me crazy of course, firing all my alarms there’s something wrong here, and the story tells if worse horrors then a flare up. It always does. I couldn’t get warm to save my life. I’m often cold. As all the weird feelings took their turn on my body I steadied myself in her arms. A safe space. Thank God for my safe space these days. It’s the only reconciliation I can find for knowing that my days are numbered. All of ours are, and someday maybe, like my grandparents, we will be resigned to checking the obituaries page daily and reading aloud to one another about the latest friend who has passed away.

The episodes include flushing. A delightful thing that is triggered by being over-tired, alcohol such as red wine, and sometimes stress. It feels like you’re on fire, mostly just your face. Hot, head achy, and dizzying. All you can do is lay down, maybe and ice pack and wait to it to pass. Often this is followed by a bad stomach and then elimination that leaves you shaking and freezing in an exhausted heap after. Either too hot or too cold always, the days you feel good being remarkable in their noticeability due to rareness. During times like this it’s a guessing game of what yuck Unidentified symptom will be the flavor of the day, and how you will keep the silver linings ever present as protective cloak. After only so many days you feel your spirit being eroded away at, and the irritability sets in.

Being overwhelmed happens so easily when you’re trying inside your head to manage your invisible symptoms so no one worries or feels sorry for you. Trying to feel normal. If you fall into the trap of thinking about them too much, or too much validation you run the risk of letting it take over your spirit. I refuse to do that ever. But then I think of how draining this is, and cannot imagine fighting cancer to keep my life. It’s hard now. I fear I would not be up to that task.

After the couple of draining days follows a moment of hope, a good day. I bask in it, soaking it up to carry me through the rest. And then the back injury, ironically it happened when I wrote my last blog post. Sat too many hours in a tall kitchen chair without lumbar support (apparently). Because when I got up my back was sore and I couldn’t figure out why. But with as many ailments I thought par for the course and carried about my day. What was supposed to be a quick trip to The grocery store to drive my son to work, became a nail in the tire and 3 hours at a shop with bored twin teenagers. We ate McDonalds, gross no wonder I’m sick 😉 it was 16 degrees and the only walkable distance to bide our time. By the time I sat and got up a few dozen more times into that evening I was nearly paralyzed. Could not walk without agonizing pain. Since I’ve also been down this road I called a physical therapist I know and trust and got in right away. This story could become so long… so let’s just say I finally won the round for much needed pain medication. I may have won the round, but it feels like I lost the game. Going on two weeks of limited everything. Co-pays, heating pads, one wrong move and spasm again after so much hard work… the back let’s up and I get 1/2 a good day and the migraine strikes. Pulsating, furious, making me nauseous. I take the migraine medication and feel weird like I may not actually be breathing, like my heart may have stopped altogether, like if I go to sleep I may not wake up. All this has been in between work and life and dogs and snow and ice and teenagers.

So here I am today at the beginning of two much needed days off, and I’m so afraid they will need to be spent resting, because the migraine remnants have left nausea and a sapped spirit in their wake.

Amidst all of this writing is my breath of fresh air. This is me when I can find hardly the will to do anything still fighting for what I love. I have wanted so badly to write, and yet my mind has been consumed with pain. It’s nearly impossible to think when your body is racked with one symptom or another and you’re just trying to catch your breath in between. This is my way of honoring my experience. When I see it on the page I judge myself. I sound so dramatic, it’s not as if I have stage 4 cancer. This perspective becomes a slow dance with denial, so I can live as fully as I want to. I was blessed with an iron clad will. My gift from the Universe. It must have known I would need it. I choose my reality regardless of my circumstances. I have chosen for it to always be this way.

This is an experience I am having currently with chronic illness. Right now it refuses to be ignored, and constantly sucks at my writer’s soul. Stay tuned because I refuse to give in. Stay tuned because between the night sweats, pain medication roller coaster, confusion of “the correct approach at healing”…there is wisdom between the lines, and between the symptoms.

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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