Tag: #theinvisiblebattle

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Love heals all wounds

Slowly very slowly I am becoming myself again. Grief takes you away from everything you are and everything you know. That’s what I have learned recently. As the storm clears however, what I am finding is a new appreciation for all that I have and all that I am.

This year I do feel as if January was the lost month. And that’s a lot of time to lose for someone who doesn’t want to miss a second. But was it really lost? Or did we only stand to gain?

Gain?! How can I possibly suggest watching our dreams crumble could result in a gain? I can hardly believe what I’m typing! But yes you gain something. Perspective and Presence with capital P’s.

Now I am here finally able to wipe the tears that kept smudging the blueprint of our lives and begin to draft again. This 2 months has felt like a single lifetime.

Recently I had my kids write me a letter (to lift their grounding from the dog peeing on the couch). They were to write an essay on their experience with me as a mother. At some point I may share them in their entirety, but to summarize for now. They love me, they really love me. It’s unthinkable they wouldn’t right?!

But often times I don’t feel loved like the humans do, it’s part of what I come with.

Recently someone told me at the end of the day we are who we are. Seemingly simple advice right ? Why is it that it’s the most simple of advice executed at the proper time that is the most profound?!

I’ve spent a lifetime fighting what I thought I could become, because of the things I saw and experienced when I was little. If there was any chance I could be that, I wasn’t going to take it. I was a vicious slave master over myself, and I did not use kindness to meet my goals.

I found as a mother I could keep the same viciousness I treated myself with away from my children, but that meant I had to keep a large portion of me distant as well. I replaced me with more warm and safe characters. Until later in life I began to realize they had their own dark sides as well, and maybe I wasn’t so terrible after all. I grew and I grew.

I have always done it backwards. Their love saved me, when it was “supposed” (such a nasty word) to be my love nurturing them. I loved better and more than my memory allows me. Again that terrible slave master who was constantly whipping me when I would come even close to the behavior of my mother. It was exhausting to be that vigilant over myself and much of their young lives they have seen me tired and stressed.

Until finally I put the whip down and began to give myself nurturing and affection.

Again seemingly selfish in the world of society’s view of the mother. But society never knew my beginning, and kindness was the medicine I required all along. I could never be warm, gentle, and kind with my children when I couldn’t be with my own child. It was always incongruous and disconnected. And I was always aware that I was. Not a fun combination. That shit needs to stay in your subconscious so you can survive. I’m an odd breed. Always aware when I constantly wished not to be. My gift and my curse.

Thoughts like, “it’s too late”, or “you did this the wrong way”, only harm my soft new self. Like a baby from the womb my new self isn’t ready to take care of itself yet. I needed nurturing, and I found that in my love in my 36th year, and the rest as they say is history.

Not co-dependent love, despite my sometimes fear of bordering on that 😉 not all consuming love, not burning love, not scathing or scarring love,

Generous love. Benefit of the doubt love, trusting love, gentle love, infinite love, graceful love, warm and available at all times love. Patient, oh so patient love.

Love heals all wounds. And I hope to love my children and family with this healed self for the rest of my days, and I hope to tell my story so they can know how hard I had to work to be available to them. So that they know I fashioned a self out of scraps. And what it takes to do that in the way that I did.

My gratitude continues to grow by leaps and bounds and perhaps this new self that is growing and being raised with all this love will have the courage to write books and talk you the world about her experiences.

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Frozen in time… just like our donor Sperm

What does an excessively driven/determined person do at a 14 day post intrauterine insemination negative pregnancy test ? Ha say that five times fast.

Did I mention this was the third round overall? Did I mention before we could start it was awaiting the thyroid level each month? I guess we have been at this longer than I realized.

She obsesses of course. Finding every bit of tangible evidence that we still could be pregnant. Some people don’t get their positive until day 18 or so, but that’s probably not with for sure predicting of ovulation like we have with IUI. The clinic said test today and if negative to stop progesterone. Go to Jail, do not pass GO, do not collect $200, you are failing at the game of life. No cute little blue or pink figures to stick gleefully in your car.

And she writes to cope of course.

Except she can barely write because she can barely focus on anything else. Thankfully as a Clinician she is drawn out of her own mind naturally during session and at least has that break.

Ok that’s enough third person. Third, third, third…. no charm here, not today. Stay positive they say. The stork is on the way.

I’m starting to get hard on myself. Christina are you always going to find something to be unhappy about? Three teenagers, two dogs, a career you adore, and healthy and happy love. Am I allowed even to want more? Or to have the emotions I do right now? Therapist says of course you are. Human says don’t you dare, it will hurt too much. You’ll get too caught up in them, and then what.

Don’t get down because stress inhibits pregnancy, don’t drink coffee, don’t have processed sugar, don’t exercise too hard….. Make sure you sleep enough, eat healthy… and my head spins. Hyper focus and it’ll be more likely.

Superstitions abound.

Does this mean we are meant to foster and adopt? Of course I know my wife wants to grow her own baby in her belly. It tears at me when the emotions finally hit and she bursts into tears. I fool myself into thinking I’m the strong one in this scenario. Just because I can hold my emotions hostage with much more command, an ability I never asked for.

I recall being witness to another’s journey of this variety and my well meaning and with little understanding advice at that time. I remember feeling a tad critical of their sharing with me that they couldn’t be around happy pregnant women. And here I am not even able to look at my FB feed because there are just fucking babies everywhere. It hurts doesn’t it? Oops.

It’s only three rounds I try to tell myself. I try for perspective seeing people have to try for years. But we are using science and spending a hell of a lot of money. Guilt. Another rub of not being how “God intended” of course. I don’t even ascribe to that belief and yet by now it attempts to leak in.

Can I ever just be still and happy? Couldn’t we have just honeymooned ? Be enjoying our love? Why do I drive so hard? Why is this so important when often it feels hard to connect with the children I’ve got. Why are we bringing a child into a world like this? Only to struggle and await the many impending disasters? I’m already overwhelmed at the drop of a hat. What am I doing ? And is it the negative result that makes me feel this way? That must be the sadness, frustration, and pain talking.

Because in clearer moments I know exactly my heart and what it wants and deserves. Why do we get so nasty with ourselves, so unfair?

I’ve been sick the past couple of days, and I know that isn’t helping. Sky high irritability, dizziness, and a variety of uncomfortable symptoms. I’m too driven even to be sick. It is just who I am. Do I have to make myself wrong for everything?

Be still Christina. Stay…..

Broken hearts heal…. and you will get your baby. Be patient….. I’ve never been patient. Does this mean this is my fault, and I’ve brought this upon us? Will I always function at a frenzied pace? Is this a fault?

Life brings you to your knees so you are forced to find faith in something. Faith in myself is always the lesson needed.

Stay…..

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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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I came in like a wrecking ball….

For as long as I’ve remembered I’ve been deeply concerned with what kind of person I was. Even as a child my constant focus of movie watching (even Disney) was making sure I felt like “the good guy”. I have had an over-sized conscience always. I remember often wanting to rid myself of it, so I could partake in normative teenage experiences. But I would over-think/ deeply think about everything. Nothing could just be done. Which is an interesting compliment to my natural ADHD blessing of impulsivity. Later in life after I had decided to choose to rid myself of religion as my reason for “trying constantly to do everything right by someone else’s standard of right”. When I finally started to allow myself my own life, which created tons of inner conflict, then impulsivity took me far out of balance in the other direction. Then I had to face the most egregious of all wars, knowing full well when I had made an action that was unfair to someone else. They say ignorance is bliss. “The mysterious they, whoever they are.” They in this case would be more correct than they even know. Ignorance is a bliss I have never been afforded. I was gifted with a keen awareness of self and others. I can make connections in an instant that others have kept carefully out of their awareness for years.

I cause pain. This gives me great conflict. But then pain opens up the possibility for healing. I don’t just rip off the band-aid. I apply salve and anti-biotics as well. I am saying this to myself for the first time. Realizing I am not sinister, even though the feelings of the actions suggest it to my “Jimminy Cricket.” Being unwittingly tasked with being a person who reveals painful truths for a living, I am only now coming into the full realization of how this mixes with my shit, and creates a dangerous cocktail. I am proud and it is an honor to do this work, and it also takes a toll. It takes a toll more when it is personal, as it is for me right now. When I am inside the pain, not an ally and observer.

I shake up systems. Family systems that have operated on unspoken rules for years and been “just fine”. The thing is those unspoken rules often create great invisible pain for those that are silently expected to repress in the name of someone else’s comfort. Do the others not realize the discomfort of the person asked to adjust? Do they literally shield themselves from painful truth that much? Or does some part of them know and refuse to look?

Part of my coming out process included me learning to introduce myself as gay and not wince. It took awhile, but I recognized early on that if I seemed ashamed people will hop right on that bus. I knew the feeling of repression before I knew how to name it, as most of us do. It’s a silent and slow death by poisoning. It saps just a tiny bit of your soul in each interaction. And since it can slide by so unknown the damage resides on the inside. A beautiful smiling husk that keeps others happy while the inside is rotten and burning with pain. The holder of the families pain, struggles under their burden sometimes named depression, all the whole elaborate defense mechanisms as intricate as scaffolding’s you see on skyscrapers in New York City. They deem themselves the weaker of the flock, when really they are the strongest.

I seem to always be the common denominator in the equation of relationship that demands truth to be fully seen and listened to. I have never been able to stay quiet about truth; my gift and my curse.

Today I sit in extraordinary pain as the love of my life and I experience what it feels like to be seen as different, somehow less valid. I am tasked suddenly, like being faced with an oncoming accident in progress, with navigating this treacherous terrain. Of behaving with grace and compassion in the face of invisible and subconscious judgment. It’s innocent enough. My partner being asked by a sibling to not make their father uncomfortable on his birthday by me coming to dinner. That’s in the name of justice right ? It’s his birthday after all. So my beloved is expected to take a seat at the table, hold back her tears, and her self. She is asked to present the husk, the representative only, her true self is not welcome to the table. “Forgive them because they know not what they do”, it is ironic isn’t it that religion should come to mind right now. The pain is searing. I wonder if they know that? I suppose they also take for granted their permission to get married, be a couple, and to show up at events not making anyone uncomfortable with their presence. She is “asked” to only talk about things that won’t make anyone uncomfortable. Keep it light you know, work, whatever can be accessed without revealing too much. Exhausting. I wonder if they know how exhausting to be asked that?

I am in a raw state of pain right now. So I turn to my writing and my speaking truth out loud. It is salve. It is bandage and medication. I am angry and hurting, and I promise to turn all of this emotion into something that helps others and not into the pain that caused it. That is my promise. My place at the table of warriors who protects those who don’t know words for their feelings, and who have been silenced by lethal expectations, sometimes unspoken: the ones the highly sensitive notice and take on themselves. Too heavy a burden for anyone, but their heart will try nevertheless.

I don’t trust myself right now to write any further without being unkind. I have learned to stop short of that and process and synthesize my feelings until how I express them is of my choosing. Using wisdom rather than weapon.

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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