Tag: #ibdwarrior

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All by myself

“This far away look. She is somewhere else. In another time and space, one devoid of any warmth and comfort. Who would ever venture back to that to collect themselves ? Isn’t it unnecessary ? If you want healthy love, you must be able to bring your whole self to the table. If you want healthy love the way I do anyway.”

It’s been a day. I’m just sitting here thinking about the difference between transparency and vulnerability.

I realized today I’ve been going through life preaching all about vulnerability, and I’ve never truly been vulnerable. I utilized transparency to battle the narcissist dynamics from whence I came. But true vulnerability is much more terrifying. I thought what I was doing was being vulnerable. It’s more than startling to realize that isn’t the case.

I spoke it but I wasn’t living it.

So I’m sitting with that. I’m sitting with lots of things right now. But they aren’t on top of me any longer. I can sift through them while safety is in place. Pick one thing up as I’m ready, turn it over in my hands, and put it down when I need. There’s no overwhelming frenzy. I am no longer held at gun point. Who will I be when I’m no longer there?

The unknown whispers at me, again no longer screams, only gentle whispers. And my software is trying to catch up.

When did the screaming stop? When did I stop being afraid?

I think the real answer is I didn’t. Wow, and that line brought more tears. It never stopped because it has all been locked up inside of me and carried along the whole time. I have never unpacked it with anyone truly, and I’m always surprised when people don’t put it together themselves by looking at me. It’s such a disconnect.

So recently I’ve been taking several journeys into vulnerability. I am doing EMDR with a therapist, I am seeing a trainer so I can simultaneously strengthen the house I live in while going through this hell, and I am RE-examining every inch of love. The way I love, why I love, what I need, who I am in my relationships.

The view in the mirror is interesting. It’s standing with all sorts of scars and imperfections and not cringing, walking away, but also not picking apart every flaw. I am looking at me lovingly as is: and it’s waves and waves of feelings. They crash over me and I try not to do anything with them, but feel them.

That’s vulnerability.

To feel something but not do anything with it is vulnerability. No flight, no freeze, no fawn, no fight. No intellectualizing. I’m on a battlefield and I’ve been stripped of all my weapons and armor. Now is when I close my eyes and see if the terrain was an illusion all along, and I’ll open them and the war will have been over so long, and I won’t have realized.

My song for my trauma All by myself

Because this is what I found while trying to describe my childhood. The loneliness was more profound than the chaos. I thought all this time it was the many fearful things having the deepest effect on me. But I think it was the loneliness.

And currently I’ve manifested a similar situation to simulate this while doing EMDR. So I am all by myself in this. I have support, lots of it actually. Genuine people who love me. But no one sits in those flames with me and currently there is no comfort after either.

There’s a kaleidoscope image of all the people who have ever held me and believed in who I am that scrolls through my mind, that gets me through lately. The good morning text that is consistent from a father like figure who I was blessed with. Whether I respond or not. That love is unconditional. I am hoping to cultivate it for myself and the experiences I have been through that no one else can see with me.

Right now however I have two new players who are my safest places. They are my therapist and my trainer. I knew during my session yesterday that my therapist would have to feel every inch of what she watched me re-experience and what emotions that opened in me. It did in fact work. I thought it wouldn’t work on me, but of course I did.

And by the time I got to my trainer for the day I was already shaking. I had to stop twice for nausea. Yesterday was injection day. And she was so warm and so kind to me. Every single one of these people fill the holes that parent roles never did. I just keep patching them up. It has felt like it will never amount to anything at times, all my work. But this time I have visions of the vessel staying afloat, and not being lost at sea.

It’s the rawest thing I have ever been through. “We cannot ask clients to travel further than we have ourselves”

I am on my knees and maybe now I’ll learn how to pray, and find something to believe in that isn’t just my capabilities. Ironic as the story my trauma left me was that I had none, that anyone else must be more capable than me; where is that adult that will show or tell me how to do this thing, but all I’ve been my whole life is more than capable of finding ways to meet my needs.

I’d like more from here on out. I’d like a clear picture of what my needs and wants are. And I’m not even sure how to find those things out.

For now it looks like 50 “I am” statements, weekly therapy, and facing the body I have avoided and neglected that I just expect to keep carrying me through.

For now it’s one day at a time in the fire….

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Intentions and the Cosmos

“I am not a stranger to the dark, hide away they say, because we don’t want your broken parts. I’ve learned to be ashamed of all my scars, run away they say, because no one will love you as you are.”

Lately a great many things are shaken up in my life, in ways I never imagined. I’m finding a self I didn’t know, yet again. It calls into question everything. And when everything in your foundation is shaky it’s unsteady. My stomach is rumbling like the tectonic plates of my very foundation.

I’m always so sure about my truth. It speaks so loudly to me, but what it can never know is what the next day will bring and the next. To have an adventurous life you must be willing to continuously face down your fears. For me this is necessary.

As necessary as oxygen.

I have always been a seeker. A seeker whose main objective is security is making for an interesting cocktail. Obtain security then seek, obtain security, then seek. What if I had security from the beginning? I want to know who that person was too! I need to know her. It’s not a choice.

What I am finding is a security in myself that will keep me grounded and authentic to me at all costs and this is not a path for the faint of heart. This is loving my unloved child inside more than anyone else, because she needs it the most.

This isn’t a journey most can understand. It’s cold and lonely in here and yet on the outside everyone thinks I have it all figured out. One of the largest incongruences of my life. I’m human too.

Spoiler alert. I don’t. Not at all. But I am committed to my heart and my truth and recovering that little girl who deserved a real life full of love and support. This is my recovery.

This is me!!!! I could listen to this song and watch the beautiful dancing in this video a thousand times. It’s my song for 2020.

I’ve been shamed a thousand times during my life for my wounds, shamed instead of understood. And that pain has turned me into 100 percent heart. It’s open and it’s raw and if you want to see it just sit with me for an hour I will show you.

And if you’re my friend I will hold your heart with mine. And this is me. I cannot only be loved for what I provide others. I need to be loved for the very center of me, everything that has made me the things others benefit from.

The thing that wakes you up?! That’s a product of my suffering. It did not come cheap.

So here I am at 4 am, battling my Crohn’s Disease and holding my hurting heart. Zofran, toast, ginger tea, my trusty laptop and journal by my side. I’ve lost 10 lbs since Christmas, there is nothing easy about this.

“I am brave, I am bruised, this is who I’m meant to be. I’m not scared to be seen I make no apologies, this is me.”

This last year in my 30’s is mine. I don’t want to heal at anyone else’s expense, but I’m also not willing to help someone heal at the expense of me. I’m not sure what that looks like yet, but here are my intentions.

I intend to write about trauma, in a way no one else has before….. in my way. I intend to be more connected to my children than I ever have, and give them my wide open heart and presence. I intend to be still for me when I need to figure that out. I don’t have it figured out yet, but I intend to work on it.

I intend to discover and honor the body that has carried me this far. I let it take the brunt of the world. It needs to stretch and move with joy. It needs to release years of shame and being stifled and huddled terrified. It deserves to be nourished and cherished.

I intend to love bigger and harder than I ever have, and to always include myself in that equation.

“Look out because here I come. And I’m marching on to the beat I drum. I’m not scared to be seen and I make no apologies this is me.”

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To Humira or not to Humira

So I’m trying to make a very big decision. Whether to come off of Humira or not. I’ve gone back and forth and back and forth for months, and here’s why. If you come off of a biologic it may never work for you again, and can throw you into a terrible flare. The burning question is however, did I even need it in the first place.

I’ve been taking Humira since around 2013. I was diagnosed with Crohns based on a scan suspecting appendicitis and a follow up colonoscopy. I still remember to this day my GI went back and forth with her diagnosis. The tissue sample came back acute not chronic, but she made the conclusion based on the films that I have Crohns.

I so willingly wanted an answer for my problems at that time. A variety of odd sensations in my body and a large level of discomfort and fatigue constantly. Heart palpitations, heavy periods, chest pains. I’ve had more heart tests than you can imagine. However, I was severely anxious and stressed, in the wrong relationship, and working way more than any human being should. I also wasn’t aware at this time or connected to the whole picture of my life. My traumas.

Now that I’m learning a much more holistic way to view pain in the body, especially through the lens of trauma I’m unconvinced that I should be on this sometimes deadly medication.

So one of the real questions is, did I forget ?! Did I forget how sick I was etc? I never had bleeding, or fistulas or major symptoms though mine was nearly all extra intestinal manifestations and completely anxiety which I didn’t want to be true or admit at that time. I wasn’t ready. I needed it to be “something real”, and now I know anxiety and trauma in the body are very real. It’s just when you seek medical help for anything they often only look through one lens.

So now that so many things in my life are more secure I have way less symptoms and when I do I take measures to heal my body naturally. I know I need to address how I eat for my body, and not just lean on Humira so I can eat what doesn’t serve me anyway.

I’ve been reading about many other approaches to medicine and my friend is also an acupuncturist and going to school for Chinese medicine, herbs and all that. And recently I came across this concept of “earthing”. www.earthing.com which came about from people looking at inflammation in the body and how it’s the primary source of this decades physical malady.

And then my skeptic and science brain, actually probably my Western medical natural background, says what if that’s all a bunch of crap. Which leads me to the big problem here.

Not knowing what to believe. I’m really challenged to fear I’m crazy by believing holistic versus the Dr in the shiny white coat who got her degree from Harvard. But then again is she truly just in it for the money? Have I been a victim of this drug? Or will I be?

I used to frequently wonder as a child how if there are so many religions which majorly different beliefs that you pick the right one. Since my perspective has become somewhat richer and more varied since then I know you can choose what you believe in. And I know as an existentialist I believe in the power that provides to each individual regardless of what belief they use.

But when it comes to East versus West in medicine, and philosophy versus skepticism, and faith versus facts; I’m a little lost. Do I get to just choose ? What if I choose wrong?

I’ve read and studied. I like this guy particularly https://drpompa.com/cellular-health/a-healthy-mindset-overcoming-crohns-and-colitis/ Dane Johnson. My amazing wife has bought the elemental shakes for me. And just like him my lifestyle is so busy that I eat worse and don’t stick to any of these things. He was on death’s doorstep and about to have his colon removed and then went to a naturopath.

Now I went to a naturopath once and she did the blood type diet, and the plan included lots of veggies that would have torn apart my gut. I was so lost. And no one in any of this took account the the trauma I have experienced in my life. The years it endured for, how I escaped from it, and the way all of that has significantly impacted the direction of my life in so many ways.

No one is looking at the whole picture here. But now I am. I’m just having trouble knowing what I have faith in. I do know that I have faith that you can heal your body with your mind, but for most in the throes of it this is so invalidating. Though it doesn’t have to be.

Enter, You Can Heal Your Life. www.healyourlife.com the brilliant work of Louise Hay, which I have had on my shelf from many a counseling conference and didn’t pay much mind (because it seemed to invalidate my disease) until recently. Recently I attended a workshop on energetic body types. https://blueheronhealing.blogspot.com/p/blog-page.html?m=1

And one of her sources was Louise Hay as well as Earthing.

Now back to this idea of not knowing what to believe. Of course I don’t. I had a mother and an aunt and a set of grandparents that all bounced me around like a ping pong ball using me in tactical warfare, information finding, and often for their own devices. And being overly mature for my age, willing and energetic I delighted in any form of attention.

I developed a strong outer shell geared to receive praise, with an inner self that was a molten center of wholly unmet needs. I subconsciously froze that part away for safe keeping.

My body and outside persona was carefully crafted armor.

So it makes sense now when I’m frantically uncertain and can’t figure out what to do, especially when these stakes are so high.

I know I never want to stick that pen of poison into my abdomen again. I feel it with every part of my soul. But my constitution is built up of so much obedience from one of the only systems that I ever grew up around truly paying kind and attentive notice to me. The Western medical system.

I had severe asthma growing up, and was often in and out of the hospital. Louise Hay says this corresponds to not wanting to be alive, fear of being here, which absolutely makes sense given my mothers pregnancy with an older man and out of wedlock. And the chaos I was born into.

So later in my life when feeling utterly alone and crippled with (what I didn’t know was anxiety) I would seek so much medical attention. I have so many pictures of my ex partner in ER waiting rooms. And each test and visit eventually only led me to less validation and even to be considered a drug seeker when I’m terribly anxious to even take a Tylenol.

I now realize I was subconsciously doing that to feel special, important, loved, safe, etc. and that I still did not. Not being a mother, or a graduate, or any of the accomplishments I had attempted to busy my mind had resulted in this. That unmet need core of me still radiated out into my whole body.

What else could make an energetic curious outgoing child later turn into an adult who couldn’t raise her hand in class without her heart thumping so wildly against her chest she thought she might die. Also notice when it gets very vulnerable I’ll slip into language that suggests someone else and not me? That’s a thing too.

I’m piecing it all together as I’m gently healing all of my parts back together rather than being rough with them and demanding we have it together. I have to invite and ask and nurture myself.

This is healing and this is my journey.

I imagine myself on a vision quest and meditating and the answer coming, and then my logical brain scoffs at that. My spiritual brain and my logical brain are at war.

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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