Wednesday, March 15, 2017

pain you just can't ignore.

They say it takes 66 days to form a habit.  Habits can be something beneficial - starting a new diet to lose weight and become healthier - or something bad, like starting drugs.  This is a habit neither good nor bad, something neutral that I never asked for and certainly don't want.  My mind and body are fighting this lackluster routine every step of the way. Sitting on the couch hour after hour, leg propped up on pillows and being brought the things I want: it sounds like a dream to some. But when your biggest desire is to be able to walk down the stairs correctly, with both ankles and knees pumping and flexing, to simply grab a glass of water, it's not such a pampered lifestyle after all.

It's been six weeks since I developed the blood clot in my leg and not much has changed. I'm on my fourth blood thinner, a shot called Arixta, because none of the other medications have changed the size of my clot at all. It hasn't decreased in size at all and I'm baffled to how that could be. How can I have suffered through all of this pain for these past weeks, endured not being able to walk properly or very far, not being able to stand for more than a few minutes at a time, and still my clot is the same. It feels like all of this has been for nothing.

My most recent doctors appointment was extraordinarily discouraging. After starting a constant Heparin drip in the hospital, I transitioned to Lovenox shots and Coumadin after getting discharged. Although my INR stabilized, I wasn't seeing any results from the medicine so my hematologist switched me to daily Arixta shots. A two-week period was supposed to leave me feeling loads better, with less pain and improved mobility. Instead, my pain got clearly worse. Muscle spasms turned to very painful muscle cramps that took my breath away and stopped me in my tracks wherever I was. My ankle joint became much more weak and walking on it was even more difficult than before. The medication obviously didn't do what my doctor had hoped it would.

After discussing it with my doctor, he shared his future concerns for me. He is going to speak to a vascular surgeon about removing the blood clot in my leg, although he explained that they usually don't take them out once they become chronic  - which mine is, since it has been in my leg for so long. Even if he decides to, there are risks associated with the surgery because of what happened last time.

The other, more likely outcome, is that I will simply end up having a chronic blood clot - as in, the clot will never leave my leg. Blood vessels will grow around the clot to provide blood flow to the rest of my leg. However, when I asked how long it would take the pain to go away, my doctor said it should have disappeared within a few weeks and he doesn't know why I still have such awful pain and it's not improving. He also has no idea why my leg is so weak because a blood clot wouldn't cause that. I want to start physical therapy to gain my strength back but he wants to get my leg stabilized first. Basically, either option has frustrating and scary sides to it and once again, it's a waiting game.

I thought I was in pain before all of this happened - from my bladder, my migraines, my fibromyalgia. I had a cystoscopy without anesthesia, had a hard tube shoved up my urethra without any numbing medicine and I thought that was the worst pain ever. But then I had my appendix out and having that intense, constant core pain where all of your muscles are, where you use your muscles to do every single thing, was pain that just knocked me flat on my ass. I thought it couldn't get any worse.

Then I got the blood clot and that pain was a sharp, stabbing pain that was over a ten on the pain scale. It was a pain that brought tears to my eyes, that left me wondering how I was going to get through minutes of my day, let alone hours or days. It was a pain that, when it first started, left me wondering if I wanted to live through this if it continued in the intensity it was. It's the kind of pain that whispers in your ear as you're trying to go about your day, not letting you forget the aching in your leg. It taps you on the shoulder, quietly saying 'Hey! In case you forgot, I'm still here!' It will raise its voice to a conversational tone and speak louder, letting you know these cramps and are really getting worse until finally it shouts 'OW! I'M IN A LOT OF PAIN OVER HERE!' It's never out of my mind, I can't ever ignore it.

After I got out of the hospital and the level of pain dulled, it was replaced by the burning of an upper respiratory cough, the uncomfortable feeling of a yeast infection, the shooting pains of new migraines, the joys of a stomach bug that left me on the toilet every hour for two days. Even with the lessened intensity of the pain, there are days that I just want to stay in the warm, fuzzy cocoon of my bed where I can pretend that I'm not broken anymore - that my leg still works normally, that my stomach isn't a road map of bruises, cuts, and bumps... At least until a cramp rips through my calf, that is.

I feel like I've lost a part of myself and I'm stuck in the anger stage of that grief. Although I've been unable to work for five years, there was always part of me, that little voice in the back of my head, that believed I could go back to work eventually. I harbored that inside of me, cultivating it and clinging onto it as a lifeline. It was a comfort to me, a little nugget of hope that I cherished and that kept me going in my darkest times. But now - now there's no way I can work when I can't stand for five minutes, when I can't sit with my leg dangling down in a normal chair, when I can't wear normal pants or walk down a hallway. My fallback job of being a receptionist wouldn't even fit that criteria.

I think about those shortcomings and my anger bubbles up. I feel like such an idiot when I have to use a motorized cart in the grocery store, especially when other shoppers look me up and down and stare at me with their judgmental glares. I don't like holding my mom up when we are shopping together and I'm bobbling along like a penguin but even at her slowest pace I am still feet and feet behind her. It's embarrassing that I can only wear leggings because jeans are too tight on my leg, so all of my outfits look only slightly upgraded from sweatpants. I hate that my body is a failure and I feel like that makes me a failure. I'm angry at my body for letting me down, for not holding up its end of the bargain in this deal.

When I was younger, my mom and I used to hike in an old rock quarry up the road from our house. The hills were made from loose shale and I remember getting ready to climb up them like a billy goat. Each time my mom would protest, saying she couldn't do it. But I would say, "Yes, you can!" I would scrabble up the rock face without a second thought, confident that my body would keep up and do whatever I asked it to. Working as a tech, I could do the hardest, most technical surgeries and I loved doing them. My body never gave up on me, no matter how many hours I was on my feet without lunch or a bathroom break, and I never had to second guess a decision I made because of a concern I had due to physical limitations.

When I got sick with my bladder problems, it was a heavy blow. I loved my job and I thought my leave of absence was temporary. As time went by and I realized I wasn't getting any better, I started getting depressed and felt like I wasn't contributing to society and that things were hopeless. Shortly before my appendix surgery, I was getting ready to start taking a medicine that could have potentially have helped stop my bladder symptoms entirely. With my blood thinners and side effects from my surgery and blood clot, I am no longer a candidate to take the medicine.

This journey is frustrating and humiliating on an even deeper level that I didn't understand before. My body has let me down and I never saw it coming; I certainly wasn't prepared for it. Are we ever really prepared for our world to completely change, though? I don't know what this path holds for me and it's been difficult and upsetting so far. I'm trying to stay positive but it can be daunting when every day I am faced with overwhelming pain that isn't improving. But no matter what, I refuse to give up. I try to take each day one step at a time, one breath at a time, one minute at a time - because right now, that's all I can do.

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