November 28 2017

Do you love yourself?

Silly girl,

They love you,

You just don’t love yourself.

-H.S.-

Experiences change people. Music, movies, books, religion, culture, likes, and even dislikes; it all plays a part in who you are.
Some of my experiences still embrace me, like a bad dream.
I wake up some mornings and feel the fear of my past. The sting of rejection. The loneliness of heart. 
The other day, while getting ready for work I was venting frustrations over the various situations the doctors haven’t been able to fix—mainly—my butt. Not to get overly emotional, but Jon made a comment that seriously pissed me off. Something along the lines of, “The meds helped…you just stopped taking it.”
Okay, the “meds” that worked caused my stomach to cramp up. It fixed one issue (sort of) while forcing other parts of me to stop working. In fact, I was crying in pain and bleeding more than normal during bathroom visits.
I made a choice, not him. Me. So then why does he feel slighted?
The diagnosis came 10, almost 11 years ago. When will people trust that I know and understand my own body? Especially when the disease crashed into me long before that.
I have spent entirely too much of my life being told I was making it up, faking it, or not trying hard enough. Hearing Jon sound like them–all of the people I have fought against–caused a visceral reaction.
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Even knowing the depths of his love and his genuine concern, I spent the day in a piss-poor, bitter mood.
No matter how much time has elapsed, I am still that broken little girl. That child, standing in a field outside her parents’ house talking to the cow next door. (I named him Prince and I still think about him from time to time.) He disappeared one day. I have always imagined he was sent off on some great cow adventure. I know better; I have always known better.
“Objects in mirror are closer than they appear.”
I am constantly in a state of unease, worried that any misstep will take me right back. That another surgery, hospital stay, ileostomy bag, or bowel resection is imminent. It hurts to feel this way; to constantly be looking over my shoulder for a danger that exists inside my own body, inside my soul.
I keep hoping that one day I will let it all go. That the walls I have built and fortified will come crashing down. I want the gray clouds of long ago to dissipate. I don’t want to fear the rearview any more.
I want…I want to love myself.
Love myself the way that others do.
 

November 20 2017

What does it really mean, to be in bed all day?!?

People seem to have a common misconception about what being in bed all day looks like for the chronically ill.
It isn’t all Netflix and chill. 
I had to call out from work today, which is somewhat of a rarity for me! If I am calling out, my body is giving me the business. I made it (barely) through my shower, got dressed, and even managed to feed the animals. I was running late, but I made it to the door.
I found myself standing there, just standing. I have no idea if it was seconds, or minutes, but I knew I couldn’t go to work. There was no way I was going to push myself to drive an hour-long commute in the stormy, power-outage rain we had. If I could magically transport myself to work, yeah maybe…maybe I could have bucked up and gritted my teeth.
For me (I cannot speak for others) bucking up and gritting my teeth is a full-time job. I push and I smile through the pain; whatever pain it might be that day. (Or heck, whatever pain it might be that second, that minute, or even that hour.)
Symptoms come and go, often without warning.  
Clock
My neck and head were pounding. Anytime I blinked, the pain came blinding and searing. If I tried to lift my head, the ache in my neck became unbearable. I took pain meds hoping to fall asleep.
Sleep and I are in a general relationship of oil and water; we just never mix. Often the meds will help, but even they can only do so much.
I laid there, in agony. We lost power so I was shivering and unable to force myself to get up and put on warmer clothes. Nothing offered me comfort, not my pillow, Jon’s pillow, or even no pillow. Jon had just taken a shower before leaving, so I couldn’t take a bath (we have the smallest water heater known to man, on a good day we can get the tub half full of water) or turn on the TV to drown out my thoughts.
Instead, I just laid there hoping the kids wouldn’t wake early. Hoping my co-workers were not mad I had to call out, hoping Jon made it to work okay. Hoping the pain would go away…hoping for things to be different.
There is a moment when I wake, a single breath of a moment, where everything is good. Until it all hits me. The stiff neck, pounding head, and realization that my “nap” did nothing.
I could hear the kids but I was in no position to be with them today. That hurt more than the pain in my upper body. I am extremely lucky to have my brother available who watches them during the day. He just took them as if I went to work.
In a rare moment of strength…I walked downstairs and regretted it. Jackson hugged me tight, exclaiming he missed me. He was sorry that I didn’t feel good and he never wanted me to go. The tears fell hard and fast when I told him I needed to go lay down.
This is what I meant by it isn’t all Netflix and chill. These tears are the reality of a day in bed. It isn’t TV and snacks. It is disappointment–your kids’ and your own. It’s regret, guilt, and pain.
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Lying in bed all day means staring at the clock. Feeling guilt like a second skin, and wishing for more.
 

November 11 2017

Flareplane

Sometimes I can foresee a flare before it happens. Little warnings fall and rise with each passing breath. I think of it as an internal airline flight; my body projects turbulence, flashes the seat-belt sign, warns me with nervous-looking flight attendants scurrying to their empty seats, yet…it isn’t until the eleventh hour, when the oxygen masks are dropping from the ceiling that I ever take notice.
Err, notice is hardly the word. I know the flare is happening–I feel it with every fiber in my being–I just choose not to acknowledge it.
The idea that you should help yourself before helping others never crosses my mind. It is my pride that keeps me burdened. I have an overwhelming sense of self-sufficiency, a trait that is shaping up to be both a blessing and a curse.
I wish I knew how to tamp down my feelings of inadequacy. I wish I didn’t feel like I have to take on the world by myself. I wish I wasn’t ashamed of being viewed as weak. Asking for help is an over-looked strength, and I know the last thing in the world anyone can call me is weak, but knowing and feeling are very different.
Of that I am sure.
You might remember from my last post that I was told to pray for both viral and bacterial infections. Well, I can’t say much regarding the bacterial (belly button) situation; it appears that the easy fix was neither easy nor a fix.
As for viral, I have a lot to talk about! (In great detail actually, but I won’t.) I will suffice to say that I got a viral infection. I was bedridden. I hated my body. I have a lingering cough, but I am on the mend thankfully. Going purely off of how bad I felt (with no insight into what the alternative issues could have been) I might not have hoped so hard for the infection; it kicked my ass.
Following the infection came a sleepless week of frustrated hell. My body demanded sleep, but my mind refused to allow it. Worse, my mind actually functioned better without it. I think in a 55-hour period I had managed a full 6, maybe 7, hours of sleep. It wasn’t just that I couldn’t shut off my mind, it was like I was living out a movie. It was as if I had developed the ability to astral project myself. I hated every second. I counted sheep, took baths with lavender, defused oils, and even spent hours staring at the wall–to no avail.  
Unrelated, I started receiving calls from medical imaging places again. I guess it is finally time to schedule that bone density test. I have no idea why of all the tests/scans I’m forced to do, this is the one I am avoiding. I could say it is the unnecessary burden and an undue hardship of having to figure out how to schedule ALL of these appointments while maintaining a job, commute, children, blah, blah, blah…but that just makes me sound selfish.
I am incredibly lucky to have a job that has sick leave, even if I burn it as quickly as I earn it. In fact, I am incredibly lucky even to be working. I know there will come a day when I have to quit. I could also say that of all the tests, this is the one that matters the least. Okay, maybe not the least, but the results of this test won’t bring about life-or-death decisions. They might bring about diet, medicine, or even lifestyle changes, but nothing detrimental.  
Is it the change that scares me? I would think I would be used to that by now. Is it the frustration of having yet another thing thrust upon me that is outside of my control? Is it the agitation of jumping through hoop after hoop, only to be left in the dark? Probably all of the above, and then some.