Tag: #crohnsdisease

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Parenthood is not for the faint of heart….

When I was a kid (I kind of chuckled at this, the joke is I never really was a kid) I used to love roller coaster’s and all thrill type rides. Later, probably after watching any of the Final Destination movies, it began to occur to me that these large machines were as capable of breaking as any, and I could be putting myself in danger. Let’s be honest I hit a point in my life where my imagination ran my world, and what it often told me is that death was somehow after me. So I recall after this occurred I would still try and push myself, but by the time that conglomeration of nuts and bolts reached it’s peak, inside I would want to scream “someone let me back down before something bad happens.” I would want to turn back and the only thing that usually prevented me from doing so (was probably my ego) was the fact that other people behind me were waiting and I would cause a scene. If it weren’t for fear of inconveniencing others I would have marched right back down the line and out to safety, never having plummeted.

*A present time update is that I do not ride those rides. I get dizzy, and also feel like the chiropractor is necessary after a single ride. I am officially “old” 😉

In my life currently with regard to parenthood I am going slowly up and up, imagining my impending doom, and feeling sometimes as if I want to scream, let me off this ride. When you’re a new parent you spend lots of time imagining what the heck people mean when they playfully warn you about the teenage years. I feel like I did not take those warnings seriously enough. What I have learned in my 16 years of parenting that IS comforting is that MOST everything (at least so far) is a phase, which means it does pass, you get a brief breath of fresh air, and then a new struggle will be laid out before you. Just as soon as you feel you have the parenting game figured out….. it changes. 

I used to get so scared and bewildered when caught in the moment that I could only intensely emotionally react to each part of the phase. When it was in its worst I thought I would never make it out alive, and when it resolved finally, I felt I would be safe forever. Both of those illusions can be very dangerous. The reality is that all things in life will ebb and flow, there will be good and bad moments throughout. It’s about making it through the difficult ones and how we manage that, and about enjoying the good while still knowing it will not be some constant state to try and grasp and keep forever. It’s like a flower that you can’t pluck and take with you for it will die. You appreciate that moment, take a snapshot in your mind, and buckle up for the next hurdles.

Currently my hurdles are compounded by my self-components : ADHD (this is a big one), being highly sensitive, Crohn’s Disease, Anxiety, running a full time practice doing a job that while very rewarding, can take a large tax on my available resources, which brings me to “being the type of person who constantly is spread too thin because of their sheer thirst for experience in life and inability to sit still, even for a second”, PTSD (also a big one), an ex-husband who does not really fall into the category of supportive (understatement), personal struggle with self-image including still feeling inside like I look like my 20 year old self and becoming terrified when I see my “nearing 40 self in the mirror”. I am sure there are more, but these serve the purpose for now.

At any given moment I burn at 1,000 KW hours (this probably doesn’t even make sense and I’m not going to fact check it, because if I do my thought train will leave the tracks, and my inspiration may be lost). I burn bright ok, strong and bright and I go and go UNTIL I drop. When I have dropped you WILL KNOW. If you see my drop you are most likely to be my partner or my kids. The drop can appear as ugly snoring on the couch curled up with Sig, but more often the drop appears with me being able to hardly focus on anything, and being very SHORT. Here I sit knowing I can show up day in and day out warm and friendly, an ALLY for my clients, and knowing that my children get what appears to be “the shit end of the stick”, the very worst parts of me. Writing this line even almost brought me to tears. They get me running on fumes, and we all scratch and claw and bite at one another at the end of the day.

And here is the epiphany fellow parent travelers who come across this: The great trick here is this is also what I get, “the very worst parts of them”. I said to my partner the other day in an adult temper tantrum moment, “but I don’t want to be the mom”. I came across a lovely woman on my travels to Texas. She is from Iowa and has a beautiful family that sounds like a dream. When I shared some vulnerabilities with her she said something to me, that I will keep, treasure, and now share with others. She essentially told me that our kids are for other people and not ourselves. We are home base, they come home and refuel, and pack up and go out into the world to others. I think I didn’t know, that I didn’t know, if I was ready to be home base yet or not.

When we feel safe and loved really well, our full selves are able to be present. This means also our selfish and mean selves, selves we have to learn to manage. I want to show up for my kids journey with this. *disclaimer this is not an excuse for blatant poor behavior and if you come up with some code for how to know exact lines around this please share it with me. Discerning how much wiggle room to give, and when being a parent takes priority over being a friend is a costant battle.

Children when they are young are very gratifying, they love the daylights out of ya. They give and give and give, and would fix everything if they could. Their warm light brightened the path for me to come back from years of a neglectful  and confusing childhood. My children saved me. I’ve struggled with, is this ok?, should I be guilty for this? Are they too parentified? So many things. The reality is though they are my greatest motivator, for which I would never have traveled this far. I need to keep this in perspective as I journey these treacherous paths.

So now I talk to myself as much as I talk to anyone reading…. now is my time to fully bloom into adulthood (my path with this has been affected by my personal story, and does not appear on a traditional timeline, if anybody’s really does) and to be their harbor and be patient with them while they go through the phase of selfish discovery, the phase I went through very latently. I went through it while they were young. This happened because I didn’t have the space they do with me. I have to always remember that fact. When I am lost I have to always remember that fact.

I need to find a way to reconnect with my 13 year old daughter. Some of that journey has begun by reconnecting with what my 13 year old self may have left unresolved. Some of it has a life of it’s own I can’t control. Some components I believe are genetic and temperament and some things are beyond the scope of being able to figure out. But I’ll be here keeping on… trying. Because it is what I know how to do. I don’t know how to give up. That is my one true gift. I didn’t give up on becoming a parent. I continue to become one every single day. There are always new lessons and growth to be had. The most I have ever learned in life is from being a parent.

 

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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