Years ago, I was given the plan of how my medical situation would play out. A sort-of “these are the options” type of conversation. Always, “the last resort” was getting a pump – an intrathecal device. That hockey puck-sized creature that would be needed only “as a last resort.”
It took years of trial and error: procedures that worked for a time, meds that helped and others that didn’t. Always, I kept “the pump” in the denial section of my brain. I essentially forgot about it. Almost.
The reality came crashing into my life however when I met a patient I’ll call Mario. I met him when my doctor’s office was still in “the dungeon” of the hospital. The way to said dungeon was a walk through the lovely lobby area, through several hallways that became progressively less lovely until you arrived at a kind-of creepy elevator bank. Then, you’d take the elevator down two levels to “the dungeon.” It was a crammed space. But the staff was, and remains to this day, a great group of people.
Anyway, Mario arrived while I waited for my appointment. He was miserably ill, in so much pain. He used a cane and struggled to get comfortable in the seriously tight space they used as a waiting room. Picture a space that’s half the size of a NYC subway car at rush hour. Fill that space with about fifteen chairs. Now fill those chairs with folks using canes, walkers and wheelchairs and you have a party! On top of that, imagine being in the worst possible pain. Knees against the seat in front of you. It was awful! But the doctors had extraordinary reputations in the RSD community. So, once a month – maybe more or less – we’d all suck it up and go. People in pain do what needs to be done to get any kind of relief. Lives depend on it.
Mario was talking a lot on this day. He’d finally decided to get the pump. His pain was too much to bear any longer. His story had us in tears. Suddenly, I was inwardly panicked. Was this going to be my life? Was Mario’s life a future version of mine? I left that day inwardly wishing he hadn’t talked so much.
Fast-forward a couple of months. Once again present for my appointment, trying to get as comfortable as possible in a sardine can with eight other people. The door opens and there is Mario. This time, Mario couldn’t really speak. He was in a wheelchair, nearly incoherent. Pale, crying and shaking, he was gently pushed into the waiting room. He clutched an emesis basin. They had to remove two seats to the hall to accommodate his chair. The staff reacted immediately, the patients didn’t know what to do. His companion checked him into the office while we all stared, or tried not to. Mario had gotten his pump placed and was not reacting well to it. That was the only piece of the story that resonated with me. By the time my name was called, I don’t even remember walking into the exam room. I do, however, remember saying to my doctor, “I don’t care how bad things get, I’m not getting that pump. You’ll have to figure something else out.” It was a nightmare that might end up as MY nightmare. Being diagnosed with any disease is a life-altering, shattering thing. Seeing it playing out as a horrible maybe on someone else with the same diagnosis is…… Well, let’s just say it’s as bad as it gets.
I remember my husband trying to calm me down. “We aren’t there yet, Beck! There’s so much we haven’t tried. It’ll be okay no matter what.” My fear ebbed a bit as we continued trying new medications and procedures. Once again, I “forgot.” More denial for this gal. My denial was my survival.
It was about three months later that I returned to the office. Sitting, in a regular chair, was Mario. He looked like a different person! He still had his cane, but his gait and overall appearance showed no sign of what had been. Shocked was just the tip of the emotion explosion in my head. He was chatting everyone up, laughing and being “normal.” Finally, I’d had enough. Getting my courage together, I interrupted him politely and said, “I was here the day you came in, in a wheelchair! You were so sick. What happened?”
Mario smiled and said, “I reacted badly to the first med they put into my pump. Now, I feel good.” The first med? Now I feel good? “So you still have the pump?” I had to ask him. “Absolutely! It saved my life. That was a bad day. I thought I was dying.” I did too, to be honest. But here he was, acting like someone not in pain. Like someone not facing the firing squad of RSD. It floored me. I had so many questions. But my name was called so, reluctantly, I moved on. By the time I left, he was already in another exam room. My chance to dig deeper into his miracle story would have to wait.
It was five and a half years ago that I finally arrived at “the last resort.” There’s a certain point where safety tops everything else when it comes to repeated epidurals. Procedures that involve injecting the epidural space of the spine can’t go on indefinitely. I was given the packet telling me all about life with the Medtronic intrathecal pump. I half-heartedly watched the DVD about what my life could be like. Then I put it back in the packet, and put the packet in a drawer. I “forgot” about it.
Eventually, I scheduled the required trial to see if I was even a candidate to get one. After a week in the hospital, the team concluded that I would benefit greatly from having the pump placed. I didn’t really want my daughter to see me while I was in the hospital. I was ambulatory but hooked up to machines and tubing, etc. It took a lot of convincing, but I finally agreed that she should see for herself that I was ok. As long as I live, I’ll never forget the look on her face as she stood clutching my husband’s hand. Everyone was telling her how “okay” I was. “See? Mommy’s fine!” Yeah well, even at that young age, she was incredibly perceptive. My family was trying to show her how nice the room was, how kind the staff was. None of that mattered. My little girl looked at me for a long minute and said, as seriously as any adult could have, “This is awful. It’s not nice here.” She would not be convinced. To make matters worse, my roommate – alias Delores – was an irritable woman who’d lost her arm and had just received her prosthesis: a metal hand. Seriously. I think that was the last straw for my small child.
Delores had no family visiting her regularly. After surprising me one night by quietly standing at the foot of my bed – watching me – she started talking. Apparently, her children no longer spoke with her. She was divorced and alone. Alone except for her mom. They had a “complicated relationship,” her words. My family was with me constantly, I was grateful. Being alone late at night wasn’t fun. But then Delores started calling out to me, asking if I was awake. We had a few decent conversations. She was in constant pain and very bitter about her life. She had a right to be. What started out as something scary turned into an education.
When we first met, she sort of grunted at me and said that I was “one of those….” To be honest, I had no idea what that meant. One of what? Turns out, she meant I was a person surrounded by family, someone positive and upbeat. Initially, I thought she was a lot older than she actually was. It took me by surprise to discover that she was about twenty years younger than I assumed. Pain ages people. Sickness ages them too. Look around at the people dealing with diseases! I’ve come to believe it’s unavoidable. Can you imagine one of those drug commercials: “the side effects include upset stomach, headache and aging before your time. The years will simply march across your face and body. Ask your doctor if (drug name) is right for you.”
It took me nearly three more years before I decided to get my Medtronic pump permanently placed. All I could think of was my daughter. I used her as the excuse when the doctor asked what I was waiting for. I actually lied to him at one point, “Seeing me in the hospital was traumatic. I don’t want to put her through it again.” Truth was, I didn’t want to do it because I was traumatized. Would I die? What would it really be like? Would it work? There were too many questions and no crystal ball-confirmed answers.
But it was time. Before the device could be placed, I had to have major back surgery because my spine was unstable. As I walked around, my legs would suddenly go out from me. Terrible pain and then no feeling. I nearly fell a few times, right into traffic and once on the subway. That scared me into getting all of it done. Back pain had been with me my entire life. The issues I faced were congenital. Throughout my childhood, I always complained about my back. My parents took me to see THE specialist. He had me bend and touch my toes. “She doesn’t have scoliosis. She does, however, have bursitis in her right shoulder.” And that was it. The technology didn’t really exist as it does today and if it did, it certainly wasn’t accessible.
Once my back was finally fixed, the pump was placed. I’ve had morphine in it ever since. Well, I did until a few months ago. My Medtronic intrathecal pump saved me, I fully believe and acknowledge that. It helped calm the RSD, for the most part. And it helped with my back. My body changed a lot over those five plus years. All of the weight I’d lost prior to the surgeries, over 60 pounds, was a memory. I didn’t gain it all back, but some of it returned. They say morphine does that.
Without realizing it – or acknowledging it, to be truthful – my so-called youthful features were gone. I felt like my face had accepted that truth of RSD. My eyelashes and eyebrows thinned out. At least I can boost the lashes with mascara. RSD essentially ruined my eyebrows. I got over that quickly though. When pain is your shadow and constant companion, vanity takes a backseat. I’ve never been one to play the “how old do you think that person is?” game. I’m not adept at guessing ages. The stress of my situation, the pain and meds aged me out of my life. A “normal” life.
Why even bring this up? Well, something’s happened since the pump was shut down. My skin has improved. My hair is still thinned out in spots, but stronger. It isn’t all in my mind! Since the pump has been off, the number of people who have stopped me in my travels, (folks I’ve known for a long time), to say “you look great!” has increased by 100%. Trust me, no one was saying that a few months ago. My mom, in a way that only a mom can, says constantly that now I look the way I did on my wedding day. Well, that was pre-lupus/RSD/Countless surgeries/weight gains and losses, etc. PLUS it was over 20 years ago. Oh mom, bless you for saying that! But I’ve started to see something in myself that the round-the-clock morphine may have taken in exchange for pain relief: pieces of me. Pieces of me are coming back. It’s not always a tangible change to outsiders, but I know it. I see it. I get it it now.
If none of the hiccups had happened after my pump broke down, I’d have happily continued living in the age of morphine. And been glad for every drop of relief it gave me. But now I’ve been through the looking glass. My RSD is still here, autoimmune stuff is with me. I feel all of it, handle it differently. But on this side of the glass, I look a lot more like myself. I recognize myself. The old me.
This is the path I’ve chosen. Thank you, Medtronic, we might meet again yet! Thank you, morphine, you saved my spine and my life. But now I need to live in the age of me.
Until next time….
Peace and Painlessness.