Tag Archives for doodle

Creative Pain Distractions

It’s hard being alone with intense pain late at night, as I was last night and the night before. Then again, pain that never stops is hard to cope with at any time of the day. Last night, and other days and nights, when my pain is particularly bad and sleep eludes me, I try to think of things to do – aside from amputating the offending body part(s) – to distract myself. Unfortunately, depending on the pain’s level of intensity, I’m not always successful at turning my thoughts away. However, I do usually end up creating something interesting to look at.

As the pain level rose in my legs and pelvis the night before last, I didn’t have a plan for what I wanted to create. I started to place random dots on a clean page in my sketchbook with a black Sharpie pen. Then I connected the dots together with short straight lines and they became triangles, but the sight of a page full of small triangles didn’t feel satisfying. That led me to connecting the triangles at their various points creating a sort of web, which still felt incomplete. I looked at the page for a short while then started drawing lines within each triangle transforming them into prisms. With each line I added, I saw multi-pointed stars appearing on the page that made me wish for an opportunity to experience weightlessness among them on the off-chance I might not feel any pain without the pull of gravity…

Drawing lines didn’t help make my pain go away on recent nights, but it distracted me from thinking of it for a short time as I imagined creating a new galaxy of endless stars.

 

Blogiversary: 2 Years & 200 Posts

I received two unexpected notifications this week from the WordPress staff. I’ve been writing in this space for two years and I’ve written 200 posts. When I started this blog, I did it with the aim of unburdening myself of all the stress and emotional and psychological pain my illness causes me. I needed a space separate from the judgement and input of my family and friends. A space where I could be completely honest about what I am living with, while hoping to connect with other people who could empathize and truly understand what I’m living with. I’ve gotten that and so much more from this small corner of the interwebs that I’ve turned into my own.

This past year I started sharing my writing with some of my friends and family. I did that because they still have a hard time wrapping their heads around what is happening to me and how I cope with this illness every day. I hadn’t shared my writings about my illness with them before because I was anxious about exposing myself and the raw truth of my experiences and emotions; and I worried that I might have to become less candid with what I write. However, the feedback I received from some of them made me realize that I had no reason to fear what they might think.

In fact, my anxiety was unwarranted. The friends and family, with whom I shared my writing, were all incredibly compassionate. Some expressed disbelief that I’ve managed to hold myself together all this time while living with the level of pain I do daily. They couldn’t understand how I manage to maintain such an upbeat outlook even with the many failed procedures and pain medications that often don’t manage my pain as they should. Others just enjoyed reading my writing and were surprised with the level of detail I retain about my experiences and how vividly I convey what is happening to me.

This made me feel closer to them, which was completely unexpected. I never thought it could be possible to appreciate and love them more – let alone feel closer to them. Because of this, when I sit down to write I don’t worry anymore. I don’t feel the need to consider that I might express something that may be upsetting to them because they have made it clear that the support they extend to me and the love they hold for me is not conditional on what I might need to vent. They see this space as an opportunity to tap into the truth I might not fully share otherwise.

Two years into writing this blog and almost four years into living with my illness, I continue to learn about the people in my life and myself. Obviously, I don’t know what to expect in the coming year. My hope is to continue with the same determination to cope with my illness and to share what I’m living through with others who might connect with something I post. Writing has always been an important part of my life and even though I started this blog on a whim, it’s become an invaluable tool to help me – and now people I’m close to – cope with and better understand my life.

Blogiversary Bouquet

 

Surgical Scar Struggles

I started writing this post in early September of last fall, after taking a long look at the 11-centimeter (just over four inches) surgical scar that starts at the bottom of my belly button and makes its way down my lower abdomen on to my pelvis. When I started writing it, I was feeling optimistic because it was starting to shrink and fade, but my mood shifted as I started to think about it being a lifelong reminder of what I continue to live through. I forgot that I had started writing it until recently when I read a post on Nursing Notions site titled ‘Not Yet Defeated’ about her experience with surgery and healing.

As I wrote last September, it hit me that my scar is more than a thick, raised, itchy, line in my skin that will never completely disappear. It is a constant reminder of so much. This vertical line is evidence of the most significant attempt to resolve the suspected cause of my chronic abdominal pain and the pain that grew from it and now radiates down my legs, out into my hips, and up my back. It is a reminder that a surgical team led by one of the most skilled surgeons in my city sliced through layers of my skin, fat and muscle that protected my abdominal organs to explore the space cradled by my pelvic bones to find the growth that shouldn’t have been there and remove it. My fading surgical scar will always remind me that although the surgery wasn’t as invasive as expected and the growth was cut out, it failed to get rid of my pain.

That may be the worst thing about having to look at my scar each time I undress or every time I touch it to scratch the itch: I remember the failure. The itch tells me the scar is healing, still shrinking, while my pain remains the same. Eighteen months after my surgery, regardless of how liberally I massage rich moisturizers into my skin, the itch won’t go away. Before the creation of my scar, I had already been through so much. Now, while it sits so prominently on my lower abdomen, I continue to live with the pain and more failed treatments. I thought that was more than enough. That was until I started planning a trip where I’ll have a chance to submerge my body in saltwater then allow myself to float to the surface towards warm rays of sunshine. Then, for a moment, I felt something unexpected…

Apart from my doctors, some family members, and a few close friends, I’ve taken comfort in not having to show my scar to anyone. The thought of having anyone stare at my scar is unsettling, and I’m not ready to have it become a conversation piece. When I pulled out my swimsuit bottoms recently I unexpectedly felt overwhelmed with self-consciousness. I’m no exhibitionist but I’ve always worn fairly conservative two-piece swimsuits because a one piece/maillot reminds me of high school gym classes. This means that to enjoy the water the way I’m looking forward to I need new swimwear because everything I own puts my once scar-free abdomen on display.

After anxiously searching online for hours, I finally found bottoms that cover my abdomen all the way up to my belly button completely hiding my scar. I know that in the grand scheme of all I’m living with this probably sounds vain and superficial, and it shouldn’t be a big deal. However, it’s a big deal to me because it’s another thing, more change, for me to adjust to. My life changed the day my pain started, it changed after each inconclusive test and invasive procedure to get to a diagnosis, it changed again with the first slice of the scalpel into my flesh and each stitch to close me up, and it continues to change with each failed treatment and every handful of pain medications I swallow daily.

My scar will always be with me as a symbol of what I have to live with because of my illness. My frustration is not knowing when or how deeply, coming into awareness of more changes will affect me in the future. However, I must believe I can find ways to live with it all: this time it’s in the form of spandex and nylon swimsuit bottoms. And I’ll do whatever I can to adjust to the next change when it arrives.

New Swimsuit Bottoms