Tag: #chronicillness

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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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Under Construction…..

Filling my morning with some of my most treasured….
A Home and Life Under Construction….

Good morning readers! It is 1:31 pm and I am still in bed. My immediate view is the one you see in the first picture. My son who no doubt stayed up most of the night “nerding out” on the computer, and my fir son snoring together gently at my feet as I write. What isn’t pictured here is my daughters that were also in the bed, and my person. Storytelling, snuggling, them listening (in short spurts, we all have ADHD) to me reading about writing. I am noticing (realizing) in this very moment that several years back my mind would have been in total chaos and none of this peaceful contemplation space was able to exist. This is heaven right here on earth.

This home that I live in…. I have been in it for six years this March. Six years is longer than most things in my life have been consistent save for my children, everything else has been constantly changing. It was move in ready when my ex and I bought it. The previous owners favored yellow, orange, and brown paint colors, but it was fresh and clean and bright. At the time we said it was ours we knew, but hadn’t told the kids. They were ten, eight, and eight years of age. Her parents video taped their reaction in the living room to us saying “do you like this house”, and they jumped around excitedly, an emphatic yes uttering with sheer glee from their innocent mouths. And then we said “good because we bought it”, and we all jumped up and down together in the empty clean living room and celebrated. I wonder if and where this video still exists.

Since then this house has seen many changes, and it has become a refuge for many a “lost traveler”, someone needing something in their lives, and they found some piece of that here with us, in the roaring of our beating hearts. This home is full of life, and strong strong personalities, every one. Members of this home that have lived here and departed include; my one almost marriage partner of most of my children’s young lives, this one came with a lovely supportive family that I am ever so grateful to to this day for all they taught me about family. The woman that I dated after her who lived with us for about 1.5 years. A magical wizard of a chef who wore her heart on her sleeve, and shared similarities with me in family of origin shit. Our triggers lied within each others triggers. We were mirrors. The roommate and still bestfriend and her son who is like my own, who gave birth to her second son here in our home. A single mother who always put her son first, and loves with every ounce of her heart. They rented our downstairs, and still to this day some of my fondest memories are of them being here. Then there was the last of my life changing relationships of someone who would inhabit this home. There is still much unfinished work in processing this relationship. This person brought the nurturing, almost parent like capacity to our lives. She was the first person I ever co-habitated with that I functioned well with. We worked very well together. She helped me get my practice off the ground and managed my business for a time. She taught me how to fiercely love myself, and to self-care. She showed up for us, and it all felt very safe. I was trying to crack the code on my inability to last in a romantic relationship. I broke my pattern by not turning this into a romantic relationship it wasn’t, just to belong and to not be alone. So we lived together like a family, with the best aspects, without the tearing at one another with expectation. I didn’t need to because she just took care of anything and everything we could have wanted, the missing needs, without being asked. Because she enjoyed being loving and nurturing. However there were some unseen flaws in this model and it ended quiet abruptly and unexpectedly. The lack of her presence is felt, I wish we could have kept eachother in our warrior tribe of women. I think fondly of her. To the best of my knowledge she does not share that sentiment towards me. I took more abrupt actions in her leaving our home. It would be very hard to explain. But I still think we each took things we desperately needed from that situation, but that it didn’t have to end how it did, with the severed connection.

Throughout all this time I was mostly focused on school, my career, and internal processes, this left no room for home improvement. The only small scale experience I had is when the almost marriage partner moved out and I was devastated for a period of weeks. I repainted and changed my bedroom in attempt to pick my devastated self up off the floor. I also watched Under the Tuscan Sun every single day and night on repeat. I read Eat, Pray, Love, and a Year by The Sea by Joan Anderson. I walked, and read, and exercised. I even “saged” at one point I believe. I got massages and Reiki. But I never knew much about DIY home things, inside or outside of the house, and learning proves to be daunting, and leave a slight flavor of irritability as I would rather be writing. Maybe it just isn’t my thing, or maybe I just allow myself to become so overwhelmed I don’t do it. In any case it was time for a change…. so my person this time is partially the catalyst for this. In a home with so many memories of others lingering, as part of our process to make this feel like our story, we are painting. Also on a longer term plan we would like to relocate closer to both of our jobs. So either way the house will be ready for market etc,.  Initially I resisted this movement mostly due to all the effort it requires and financial resources it takes. But after a long while of having stated an intention and not doing anything about it, one day, in true me fashion, we just picked up and bought the supplies and began….

So far the guest bathroom has gone from this horridly abrasive yellow/brown color, to a smooth, creamy, and calming Avenue Tan. It’s very zen-like. Though the outlet covers are naked, as we haven’t found the right fit yet, the towel rack with one hook broken on it remains unreplaced, and the new espresso cabinet we got to go over the wall where the toliet is still remains in the box from Amazon. I abhor attempting to assemble and hang things. I have very little patience for such tasks. I often wish this were different, and I try to make up my mind a new adventure will be different. Alas, each new attempt just tries my patience, and makes me wish I never started. Also although I appreciate thoroughly the beautiful view of a finished product, and the ensuing sense of accomplishment, I often thought that I hope this is the last time I can’t just pay someone to labor for me. :p I always wanted to be one of those “do it yourself people”, I admire them. But I am thinking as I write that they find a joy during the act of such work and crafting, that is not the same for me. Maybe those type of people would just as soon have a root canal as put their most inner thoughts and feelings into words, let alone allow the world to view them?

Maybe there is a lot more to this “wiring” thing than we think sometimes. I always tended to think you could do anything you set your mind to. But then again I also thought if I set my mind not to be gay, that was also a possibility, as it turns out, it wasn’t. I think it is true that you can (try things way outside your comfort zone/capability). But to further extrapolate on this, I realize now that while you can “try on” anything, and have many adventures, some will speak to your soul and be enjoyable to you, and some will not. With regard to hard work it’s not that I don’t appreciate it. As a core value I really do actually. But anymore I get physically tired so much more easily. I give so much more of myself to the rest of the world. And since I do so sitting in a chair in a cozy office, on a schedule of my own-making, I often am unfair to myself in my perception of how much I give, and how hard I work. I also attempt to constantly deny the fact I have a Chronic Illness, because I can’t find balance on this. I either am dying from it, or choose to pretend I don’t have it at all. There is no in between. Historically I am not so good at balance, or regulation for that matter. It’s been a big task of mine. It is ever a work in progress in my life.

My daugher is making “bids” for my attention as I write this, and the thing is happening. Where I become frustrated at being plucked from my reverie, every few seconds as she asks me questions that could easily be figured out by herself. She wants my attention. She has wanted it often. She is still “younger” than her other siblings in a certain sense. She still wants to play. Bless her heart. The other twin (A) is probably thinking about her boyfriend and brooding about her phone and the complexities of life. My son is sleeping off his computer all nighter “hangover”, the bullodog encouraging him by joining. It serves me more to pull myself from the reverie to be present, it gives myself and my daughter something we both need, but again it is in ways so against my wiring. It is if I am wired for lots of peaceful quiet, books, cups of tea/coffee, being cozy or as the Danish call it Hygge (Hoo-Gah)… a post on that later. I am wired for contemplation and to ponder the mysteries of everyday society, unmet needs, and the complexities of the Universe. I could basically do that all day everday, and yet I dislike my mind tricking me into perceiving my children as a burden. This has been a battle of my existence for certain.

This morning’s writing was clearly all over the place, nothing that I expected that is for sure. I expected a summary I suppose of the current year. Some tender musings on hopes for this next one. The obligatory Resolutions. Today most importantly is the one year anniversary of initially reaching out to my beautiful person. We celebrated not with fancy dinner or fanfare, but with allowing ourselves to wake slowly and lounge in the comfort of one another this morning before she left for work again. It was the best feeling. Maybe the fact that my posts have less of a beginning and an end means its meant to be more of a book. My daughter has the hiccups and she is desperate for my attention from the next room. She has been asking someone to play a game with her constantly. So I am going to go be present and hope to write more soon. I did want to share some of my thoughts on Anne Lamott’s “Bird by Bird” that I started reading this morning. At first read of her I was a bit turned off by all the religion speak, and something about her disjointed style (hmmm pots and kettles), but as her language familiarizes itself to me… it’s a bit like falling in love. I guess that’s how it happens really anyway, right ?

Unchained Melody is on Pandora. I think of days of glamorizing Patrick Swayze and in Dirty Dancing, when these days I look back at tomboy Demi from the movie ghost and swoon. Life is funny.

<3

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Don’t turn away….PTSD hurts, and finding what heals….

I had a difficult night last night. My son is having a hard time as a highly sensitive person in an overstimulating world. As a family system when this is hard on one, because we love each other so much, it’s hard on all. And the most readily accessible emotion is anger. It’s the most seductive, the most comforting. We had expectations about the way our day would go. After all we were cutting down our first Christmas tree together as this whole family. I myself have never cut down a tree for Christmas before. This event went differently than planned in every sense of the word. I always say “you can plan a pretty picnic but you can’t predict the weather”…. that isn’t original in fact I am pretty sure a Ludacris song lyric gets the original credit, but I’ve made it an important lesson in counseling over the years 😉 I also got a terrible stomach just at the moment we were cutting with no bathroom in sight and had been fighting a migraine all day. The stress and guilt and frustration at thinking I wouldn’t make it, to the outhouse blech, threw the migraine into full force. The anger thoughts are so tempting…. the why me’s, the I deserve’s….. the it’s not fairs of it all. I needed comfort and warmth, but instead was forced to be strong for my family. I wanted to show up. I always want to show up.

Strong seems to yield hard on self and others for me. So when my teenage son wouldn’t participate in photos I was anything but patient. He having just come off of being distressed the night before because his sisters were fighting over ice cream. The true result of the ice cream was hurt feelings. One feeling the other didn’t believe the best about her and being shamed etc. Hurt all around. He absorbed and internalized and it stayed with him that next day. And heaven forbid my dreams of a peaceful day be interrupted in such a manner. I wasn’t as patient as I would have liked.

All I can think here is that we need to help each other with this hurt. Shaming does not work. Blaming does not work. Anger does not work. Disconnecting does not work. Warm, open, gentle, understanding, kindness, effort, dialogue, patience…. these things work. If we don’t first give it to ourselves we cannot show others how to do the same. The model where we put ourselves to the side in an effort to give all to someone else doesn’t work either, because our unmet needs turn into anger and frustration that must find a way out somewhere.

If I did not feel so guilty for leaving during an important moment, due to something I couldn’t control, perhaps I would have been more patient. If I said to myself it’s ok Christina they all understand, maybe I could have been more understanding for my son. And then later would have been less likely to have an adult temper tantrum when I was afraid, and instead of showing up in warmth …. I froze in terror. I let my teenage son feel like he was responsible for ruining our day, with some words I allowed myself to say out loud.

The truth, my truth is that when it comes to observing intense suffering especially with my children (unthinkable) I freeze in terror. I have felt not nurturing because of this. I have felt like some important part is missing in me. I have had such a difficult time understanding why I can show up so well as a Counselor, but this aspect of motherhood always held places of deep fear for me. This is what PTSD does, it grips and holds and freezes.

As a Counselor I care deeply for my Clients, however the relationship has boundaries and I am an onlooker to their lives. I can stay and be present, and offer support and I mean it genuinely. In my relationship with my children it’s an entirely different ballgame. But I do sit and try and sort through these things. I believe that PTSD changes your wiring. And that you need to learn to work around your unique self. The self that matches your WHOLE story, not the parts that are more palatable. That you need to embrace and work with the parts that have been hurt, versus rejecting them. And that is the most difficult thing because who wants the injured parts? We want to rid ourselves. When you choose a puppy you choose the lively one that is energetic and happy, you don’t choose the sad one in the corner who looks as if it may be ill. But probably most of the time you give that puppy what it needs and it will likely perk right up and thrive like the rest. But if needs go unmet it will continue to suffer.

I had an interesting morning. I decided after a very draining experience last night in my family to rally and continue forward. I wrote an email and I called the school counselor, and I got up and helped my son wake up and I cared for him in the best ways I know how. I helped him get to school and drove him. He usually takes the bus. I pulled up and saw a woman sitting on a bench outside the school breaking down into tears. I looked once and thought you know what I don’t want to butt in, what if I make her more uncomfortable. What if it isn’t my place? So I went to leave…. something stopped me and I thought I can’t let that woman sit on that bench crying and not do a thing, when I know I can do something. Also the part of me that connected to my own pain thought, oh thank goodness I’m not alone, let me try and connect. I needed her as much as she needed me.

I approached gently and asked if I could sit with her. She stated she had just been fired from her job, and that her son who has behavior troubles was about to be arrested, he wouldn’t get out of her car so she was sitting on that bench. We realized that our children know one another in a significant way and I embraced her and sat with her. The school managed to help and her son went to school and she later told me her boss listened and let her keep her job. There’s still a lot that she needs, but this morning neither of us had to face the things on our plate alone.

If you see someone or something that has a need and you get that inclination to reach out…. turn toward it. Don’t turn away. You never know who you may be affecting, but you can guarantee that you will be impacted as well. It takes a village and we all need to be connected to each other.

If you have found love…. spread it as much as you can 💜💜💜

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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