Haunted

There are some physical sensations and memories that will never be erased until the mind fails in it's own ability to be mindful of the past and the body begins to become numb to itself.

Such haunting memories and sensations make forgetting the pain we've suffered impossible and refresh our terrors of the past, and for too many of us - the PTSD that battles for constant hold over our psyches.

In high school when I started counseling for the 1st time, I was diagnosed with PTSD, for years I had been experiencing all the classic symptoms and continued for years after beginning counseling.
Besides the obvious experiences that trigger such symptoms, I recall random times and memories that to this day haunt me. One night of the night terrors left me mentally and emotionally fragile, my parents recognizing the pain inflicted allowed me the privilege to remain at home that next day from school that I could recover myself.  I recall that night so vividly that I am still terrified I'll experience such a vivid night terror again. My parents have always been and continue to be understanding of my symptoms, fears, and anxiety and have been a strong support to soothe me back to safety. 

There are still times that I have the physical sensation that I still have one of my 2 stoma sites.

Side Note: My first ostomy placement on my left side caused my intestine to twist and make a knot over my other organs that resulted in my first near death experiences. Once my surgeon and the children's hospital finally believed me that I was not just being a "whiny child" and something was seriously wrong, that site was taken down and moved to my right side.

The sensations are so strong that I am compelled to touch my stoma sites to ensure that I do not indeed, still have an existing stoma. It is one of the oddest physical feelings and I can't even describe it other than what it feels like to have a stoma. Only those with a stoma can understand the sensation.
Other times I wake up randomly with the sensation of still having an ostomy and the innate behavior of checking to see when I will need to empty the pouch, positioning my body so that I'm not lying on the pouch but also not lying too far from the bed causing a strain on the pouch as it would fall from my body pulling against the seal made, thoughtlessly mimicking the once natural behaviors of emptying the pouch, the burning sensation of raw skin around the stoma, and instinctively jumping out of bed to "empty" the pouch before it becomes so full and leaks.

I don't know if one ever truly stops having PTSD or if symptoms simply become dormant after a better sense of resolution is achieved through counseling. I rarely have PTSD symptoms anymore, but I also am not faced with health crises as frequently as in the past. During medical tests, even as simple as a CT Scan with Contrast, I notice symptoms starting to creep in on me again.

Instead I am more frequently haunted by these physical sensations and memories that lurk behind the shadows of time, reminding me that although now safe, times can change at any moment - never to let me forget.

This Too Shall Pass...

It's absolutely amazingly mind-boggling the difference one day, or even half a day, can make in regards to health. For 4 consective days, I walked for 45 minutes or more. This has to be a record for me for consistent walking especially considering that on the 4th day, within 10 minutes my abdominal muscles felt overworked and strained as if I had tried to do a sit up or push up and half way through the walk my leg felt as though it was falling off by the knee. I am limited in my exercise as I can't strain my abdominal muscles without pain and feeling as though my incision (although healed for 10 years) is going to rip open, physical activity stimulates my SBS, I'm not supposed to lift more than about 20 pounds, and my knees feel arthritic. So exercise is a hard deal for me and this day it was showing.
The evening only worsened from there. My SBS hadn't been normal that day, it was rather absent which causes other problems and my body decided to rectify this until the next morning. I was up running for the restroom every 10 minutes, I couldn't try to prolong or I'd end up in a mess of myself. The evening's flare up left my skin inflamed and raw, and as my doctor has described my skin and my intestine: "it looks like raw hamburger". Lovely image huh? To this day I picture my skin and my insides tearing like raw hamburger!
I've discovered though when flare ups occur during the night, I can intervene and start to slow the process by lying with two pillows stacked upon each other under my thighs. I suppose it makes it less of a straight shot thereby forcing a slower progression. After a few hours into the night, I finally was able to sleep and the next morning I felt great. All within less of a 24 hour day. Exhausting!

My husband is very attentive to me when I'm feeling ill and he's become accustomed to this roller coaster of symptoms and unexpected starts and stops.
It's difficult for us to adjust to such unpredictability, particularly when we are new to such health issues and I think it can even be harder in some ways for those around us. Others feel helpless, not understanding what is happening and not knowing how to help us. At least we have more of the medical knowledge after years of our bodies being violated by health symptoms, medical tests and surgeries and we become to know what to expect with a flare up. All my husband sees is a woman reduced to tears at times, clutching her stomach, not able to walk or even stand straight up for long, running to the restroom every few minutes. He can only understand what I tell him about my symptoms or what I'm experiencing, the rest is left to his imagination. And all he wants to do is help me get off the roller coaster.

Eventually the roller coaster takes a break and we're left to enjoy some time and our lives again.
From experience, I know that the ride doesn't always seem to have an end in sight and a spiral of pain and despair is easy to begin. And quite honestly, during such trying times, I find phrases such as "this too shall pass", "nothing lasts forever", "this is only a moment in time" extremely vexing and almost insensitive to what is being experienced. It's hard to look for the light at the end of the tunnel when health issues are prolonged for years without much relief and we begin to worry it will never change. In these moments of despair, someone telling me that it'll get better, is offensive and even patronizing because it wasn't getting better and I felt no hope for it to ever get better.

Since those times, I have learned some valuable lessons though. Perhaps it isn't about reminding ourselves that "this too shall pass" but instead reminding ourselves that while we serve our painful time that there are precautionary health steps that we can take that although may not make us better, will help us so that we are not worse.
For example, during my 2nd period of torture, when I had uncontrolled SBS with bowel movements of 1 liter or more and was vomiting multiple times each day. I couldn't keep weight on my body, I was severely malnourished and at risk of a heart attack, brain seizure, and/or death every day from the electrolyte imbalance. I wasn't at a point that I could do anything to make me feel better. But what I could do was follow my doctor's recommendations religiously - I had to eat and take my medications without fail, no matter what. I didn't feel better by doing these things but I helped to combat the war in my body so I didn't feel worse with worse issues.
The fact is, it can always get worse and we need to take steps to prevent it getting worse at the very least. Eventually the roller coaster ends, it can't go on forever. Until a break comes, we must remember to hold on for our lives and do what we can to make it through.

Warped, Skewed, Jacked Up...Whatever

Chronic illness and near death experiences have a tendency of messing with your mind, self-image, and philosophy to the point that "healthy" individuals don't understand our line of thinking, humor, and philosophies very well.

For instance, I prefer my short bowel syndrome to only having 1-3 bowel movements a day (which would be constipation for me and is extremely painful at times) or perhaps my daily goal to not each anything for as long as I can so that my stomach doesn't become upset.
I don't think any healthy person understands how one can come to such a conclusion, and at times I'm not even sure if there's even another living person that understands my perspective just because I have yet to meet or talk to someone with the same daily issues I have.

My philosophy about life and death is very warped from my health experiences. I've been surrounded by death since I was an infant and so it has become part of my life. I look forward to the day I die and I have done so since I was 10 years old because I've experienced the peacefulness that death provides. I am saddened each time I lose someone but I remember that they are now experiencing the same peace I have longed to have again and so it helps me cope. I am absolutely terrified of outliving my support system - my parents and my spouse and the mere thought of it is extremely anxiety provoking and heart breaking for me. In college my mother and I traveled overseas and I told her it would be awesome if our plane crashed into our house and killed myself, her and my father at the same time instantaneously so that we wouldn't have to live without each other. She didn't like that statement, but there's how jacked up chronic illness can make your life philosophy.

Even our humor becomes twisted and is best understood by others in the same toilet bowl as the rest of us. Other than those working in the medical field, I don't know another group of people that can make jokes about and find something as humorous as bodily functions, disorders, and health issues.  When we toil through the same issues and become surrounded by pain and sickness, we have to find something to make us laugh or we become consumed. And at least others can laugh with us. It becomes a coping mechanism for many of us and as my grandmother said, it's better to laugh than cry.
And she'd laugh at you while you were crying and in pain!

Enjoy your warped perception of life and laugh at those that give you peculiar looks for it, because  there's a large group of us thinking the exact same thing as you and you just beat us to saying it outloud.
To those healthy ones, take a swim in our community toilet bowel and you'll start to become twisted too.

P.S.  I recently had my follow up appointment after my B-12 experiment leaving my B-12 at 234 or so. During the two months waiting for my follow up appointment, I was successful on having 3 rounds of B-12 shots. A round for me is 2 cc's of B-12 and I'm supposed to have two rounds each week, so I didn't very well especially since I had 2 of the 3 rounds I completed the week before my appointment! But my B-12 was 405 this time around. My experiment also landed me back in the schedule of having an appointment every 2 months instead of the 6 month I got to enjoy the time before I completed my experiment.
One day I'll learn....right???

Outlets

Having as many outlets as possible for support, shared information, and ventation is essential for surviving difficult situations such as trauma, health issues and crisis, and other life altering events.

As a child, I only knew two others with an ostomy and those were family members who had ostomies for the same reason I did - FAP. It was bad enough to have severe chronic health issues and undergo life altering, self image assaulting procedures and experiences but it was also difficult feeling alone in my experiences as I didn't know anyone else my age or anyone beyond my family members with similar experiences, period.

My parents started attending a local ostomy support group for myself and theirselves as well, I was connected with a group for children with bowel and bladder diversions and my parents gave me great strength to endure. I survived those tough years in spite of bullying by classmates that didn't know anything nor cared to try to understand what I was going through.
As a young adult, I remained active in my local support group and became more active with the national ostomy association and maintained close relationships with others with similar experiences.

Even this blog is a therapeutic outlet for me. I work in the medical field with chronically ill persons and there are times that I want to share my experiences with my clients or coworkers, but I don't. Sometimes it is frustrating when my clients make statements such as "You don't know what it's like, you're healthy" just because I don't have the same disease as them and currently am the healthiest I have been since a child. I'm not there for my own therapy, so I keep the boundaries clear. But this blog allows me to speak about my experiences in another outlet. Plus, I'd like to write a book one day and this is also helpful for documentation.

After I started being bullied in 6th grade, I was filled with an intense hate and resentment not only toward those bullying me but also in regards to my health. For a few years I tried to cope on my own without much success. Through the support of others, I was able to start accepting myself and my health. It is very hard to mentally survive such traumas without adequate outlets. Through these outlets I survived it all and have gotten to meet and form incredible relationships with many amazing people. I am a much healthier person, physically and mentally because of these outlets.

What are your outlets and how have they changed your life?

A Plan for a Plan

Planning for an activity away from home and specifically in a location you're not sure about the access to restrooms, is tiring and difficult at times. Yet, I never really thought about my thinking about that.
For those living with bowel and bladder disorders, this is a huge concern. I feel as though my life revolves a toilet. What a disgusting thing for my life to revolve around.

From small to big plans, that toilet is forever beckoning. For instance:
Every outing I want to go on, every activity I want to do, my immediate thought is restroom access.
For the 4th of July, my family and I went to a local park to enjoy an evening of music and fireworks. So all day I watched my food intake, packed up my porta-potty survival kit, and went to the restroom several times right before leaving the house. Then upon arriving, again I tried to limit my food and fluid intake and resist the need to use the restroom for as long as I could. I enjoyed my evening but at every turn, that toilet crept into my thoughts.
My husband and I will be purchasing raw land to build on in a few years. I'm very excited about this new adventure. I'm even looking forward to maintaining the property until we are ready to build, so I'm planning my mowing trips so that I can keep it under control for when we do build and my thoughts stop dead in their tracks and I begin to worry about being able to mow when there won't be any restrooms easily accessible due to location. Again that toilet is calling!
I traveled to Europe with my family a few years ago (and would like to again in the future) and restroom access was a giant concern and issue! Some places wouldn't allow you to use restrooms, some activities couldn't stop for a bathroom break for hours, some activities I couldn't even do because of bowel issues. That damn toilet!

So what do we do?
Sit at home, spending all our time with that infuriating yet so necessary and ingenious invention or do we go out, take the risk and enjoy what we can?

Because the truth is, as much as it sucks and sometimes hurts....if we let it stop us from doing at least part of what we want, then it will take complete control of our lives and we'll spiral to an abyss. And an abyss is very hard to climb out of, trust me.
It's like with any illness, we have to accommodate it. Some things we're going to have to change, but we don't have to change everything. So instead of getting to mow until it's done, I'll have to mow for a while and take a 20 minute drive for a restroom break before I really need one.
I can still travel but I'll need to plan on needing restroom access, know when I should take a break before I need the break, and do the activities I can without fretting about it.
But if I plan for that, then I can still enjoy and complete my other plans. And so can you.