October 27, 2015 at 11:50 am (Uncategorized)

Andrew is terrified of needles. He’s due for an immunization in a few weeks, and he has spent the last couple of months complaining, whining, and begging not to get the shots. Even worse than immunizations is when he has to have blood drawn. The last time this happened he nearly passed out at the lab. He was so shaky and nauseas that the nice phlebotomists fed him shortbread cookies and apple juice. Once home, he spent the rest of the day claiming he’d lost too much blood to do anything but sit on the couch (they drew two small vials) and got woozy anytime anyone mentioned a needle.

I find it ironic that my one and only offspring is needle phobic since I am the queen of needles these days. I get stabbed in the chest every time I have to go get chemo. Well, that’s maybe a little bit of a dramatic way to put it. But when I started chemo six years ago and it quickly became clear I was going to be having regular infusions for the long hall, the White Coats had a port installed in my chest. A port is medical appliance surgically installed directly beneath the skin, and a catheter connects the port to a vein. The port makes it much take in large amounts of fluids over a long time, and also helps avoid at least most of the sting some of the drugs can cause when infused through the smaller veins in the arm. To “access” my port, a nurse literally jams a sizable needle directly into my chest. It doesn’t actually hurt that much (I always turn down the offer of an initial numbing shot – why get two shots when one will do?). Still, it takes some discipline to sit still and not cringe when the nurse is coming at me with what looks like a spike.

I’ve gotten accustomed to even bigger needles since I’ve been on Acthar. Jay helps me draw up 80 units of the golden gel into a syringe, and then twists on a ½ inch needle. He always looks away when I pinch up a hefty amount of my leg muscle, take a deep breath, and then plunge the needle in as far as it will go. This is called an intramuscular (IM) injection because it passes deep into muscle tissue. It hurts like hell. Often, I have a reaction to the injection, and my leg swells. Always, I bruise badly. But, still, I try to be stoic. I do my best not to complain (well, not too much), and when the time comes for an injection I aim to do it without hesitation or too much worrying. Andrew, on the other hand, claims he will “puke everywhere” if he were to watch one of my Acthar injections.

Although I like to tease Andrew about his fear of needles, I am actually relieved that he doesn’t seem to feel the need to mimic my attitude. Andrew is already too stoic about most things related to my medical situation. When I disappear out of his life for one of my mega-long hospital stays without any warning, Andrew doesn’t fall apart. In fact, I wish he would complain more and rail against me. Instead he is quiet, contained and all-too accepting of my time in the hospital.

Andrew’s been living with my illness for his whole life. He was just 3 months old when I was diagnosed with sarcoidosis. His growth milestones have occurred against the backdrop of my disease becoming more severe and taking over more of my life. Just this past August, Andrew started middle school only three days after I was released from a 33-day stint in the hospital. He didn’t blame me for making his life chaotic at such an important milestone. When I expressed my worry over this, he told me, “It’s OK, Mom. I’ll be just fine.” And he was. He went through the transition brilliantly.

Maybe I’m being too symbolic, but it feels to me that Andrew’s demonstrative stance against needles is his way of drawing some boundaries between himself and my disease. When he was five, he could recite my entire medication list, including the complicated names of my chemotherapies. By turning his back—literally and metaphorically—on the many needle jabs that happen around our house, it feels like he is saying, “Enough.” And I like it.

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Rubber Bands

October 3, 2015 at 5:10 pm (Uncategorized) (, , , , )

I am finally coming back to life. It’s been not quite six weeks since my 33-day stint in the hospital, but it’s really only in the last few days that I feel myself picking up the fight again—the fight against the disease determining who I am, the fight against the god-awful tiredness and pain I feel every day, the fight against the part of myself that just wants to crawl into bed and never get up.

I used to bounce back more quickly after heath catastrophes. Or, at least it feels that way. Back in 2013 I was in the hospital for a grand total of 40 something days. They were 40 something terrible days of pain, vertigo, periods of blindness, and fear. But I picked myself up and shook the dirt off within a few days of getting home.

This last hospitalization was different. It’s not that I felt more pain or worse symptoms. But by the end I felt totally broken down. I could not stop crying when I got home. I cried if someone said something nice to me. I cried when my pain escalated. I cried when I thought of how much hurt my hospitalization had caused Andrew. I cried when I saw how exhausted Jay looked. Typically I’m not a weeper. But night after night I curled up on Jay and bawled my eyes out until his chest was sodden and I could not get enough air between my sobs.

It wasn’t just the crying that concerned me. After being flat on my back for 33 days, I lost a lot of physical strength and resiliency. I needed to sleep for 16, 17, or 18 hours a day. I woke to shuffle around the house a little, and then fell back into dreamless sleep that did not sate my fatigue. I’m ashamed to admit that I liked being in bed. I really didn’t want to get up. I was so out of shape that doing a simple task around the house like unloading the dishwasher wore me out. Plus getting out of bed and trying to do fold a load of laundry caused the pain in my head to escalate. It felt better and safer to curl up in bed listening to Scandinavian mysteries on my ipod.

The hardest part of getting up was running into Jay and Andrew and feeling horribly guilty at the impact my hospitalization had on them. Intellectually I knew that it wasn’t my fault any of this had happened. But emotionally I was raw with guilt. After absenting oneself from a family for a month, it takes patience and effort to muscle your way back into place. It took a few days after my return for Andrew to make eye contact with me. And Jay had to stay in constant motion to do everything around the house after working a full day. He looked brutalized by exhaustion. It was easier some days just to stay in bed instead of facing the damage I had caused.

What I’m describing is emotional and physical brittleness. It’s an aspect of chronic illness that’s hard for “outsiders”—all you healthy folks— to understand. I am fundamentally a different person than I was before I was diagnosed with sarcoidosis nearly 12 years ago. Each year of health crises, medical procedures, news of the disease traveling to a new organ, threats that I might die, rounds of chemotherapy, all wear me down a little more. Picture a new rubber band. Now imagine snapping that rubber band over and over. For a while the band will keep its shape—its innate resiliency. But eventually, the rubber band will start to stretch and sag. Keep up all that snapping and you run the risk the band will fray and break. I am that rubber band.

It’s easy to berate myself for being weak. If I was made of stronger stuff, each snap to my emotional and physical self wouldn’t break me down. There’s a lovely man who posts regularly to the Facebook support group for neurosarcoidosis I belong to. He looks to be in poor health. He posted photos of himself in the hospital, some from physical therapy where he was hooked up to oxygen on a treadmill. No matter how dire the image, he writes a version of the same thing: “You got this. Keep fighting.” It’s that kind of spirit I fear I’ve lost.

But I’ve begun to wonder if perhaps all this isn’t so starkly binary, strength or weakness, health or sickness. Living with a chronic illness means you are pitched out of a world of blacks and whites and into a vast land of grey. Maybe I didn’t feel strong during the two months since I got out of the hospital and maybe I opted out of some challenges on a daily basis. But when I look at what I’ve been doing more often than not, I feel some hope for myself. Even though it’s been incredibly hard–and at times feels impossible–I’ve been rebuilding. I’ve started going for walks to regain some of my lost physical strength and stamina. I had a heart-to-heart conversation with Andrew about my hospitalization and listened without crying while he told me how hard the month was when I was gone. I’ve begun to go back to work, picking up my never-ending book project. I’ve started cooking dinner again—not every night, but when I can—and showing up for Andrew’s soccer games. Maybe I too “got this.” So all you folks in Chronic Town—and all those in the “normal,” healthy world—keep fighting.

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