A couple days ago – on Thursday, January 24, to be exact – something terrible happened. I really don’t want to go into details right now because it’s still too difficult to think about. But to sum it up, it was discovered that the IV port that’s implanted in my upper chest has clotted over. It’s now entirely unusable. Despite the difficulties with the port, it was critical that blood be drawn that day for important and time critical medical tests. It took two hours to draw the blood, and the experienced, respected Interventional Radiologist had to run a two-foot long catheter from my elbow up into my chest. Even then, this form of catheter is supposed to be a semi-permanent solution for long-term IV access, it failed after only being inside my body for five minutes.

    The blood was drawn and I returned home. A few hours later, all hell broke loose. I started aching where the catheter had been, the pain steadily increased from my elbow to my shoulder to my neck, and ultimately to my head. I developed a searing, impossibly intense headache. My Mother spoke with the doctor who had performed the procedure to draw the blood, to be sure this wasn’t a normal side effect. By the time my Mom was off the phone and returned to my room, my face was lax, and was beginning to sag. Worse still, I found it difficult to control the muscles around my mouth in order to speak.

    911 was called. By the time the first response medic arrived, I could only barely control my eyelids, and I was having great difficulty thinking. Everything became foggy, and I felt as if I was swimming through a cloud of confusion.

    I have never seen paramedics move me so quickly as they did that night. Normally in the county where I live, they never turn on the lights and sirens, for fear that they will cause more accidents, especially around the rush hour period in which we found ourselves. But five minutes after being loaded into the ambulance, my blood pressure was spiking, then dropping, every other minute. I could no longer speak, I couldn’t frown, and I found it exceedingly difficult to remain conscious.

    The medic tried very hard to stay cheerful. But it’s when they’re forcing smiles that you know something isn’t right. He asked me if I had ever been in an ambulance before with the lights and sirens going. Unable to move my mouth, I nodded as best I could, and soon enough we were traveling down the highway at intense speed. My blood pressure was going haywire, my eyes were rolling into the back of my head, and my headache was unbearable. Yet through all of the fog and confusion, I was surprisingly aware of everything going on around me, and just how dire the situation was. But no matter how hard I tried, I found myself entirely helpless.

    When we reached the hospital, I remember being pulled out of the back of the ambulance, and through the slits in between my motionless eyelids, I saw the frightened look on my Mother’s face. And yet again, those obvious forced smiles that were trying so hard to keep me calm. But their eyes gave them away. Later on, my Mom said that when they opened the doors of the ambulance, that my face had gone a ghostly shade of gray.

    Tests were done, my head was scanned, my chest was X-ray, my heart was monitored. But no one knew quite what had happened. Several theories have come up since then, but only two have really held any water. The first was that I was suffering from vaso-spasm – while the Interventional Radiologist was trying to put that catheter up my arm and into my chest, he said he was met with significant resistance. Using a fluoroscopy, he was able to visualize the problem. He said that in his long and distinguished career, he had never seen anything like what was happening inside my body. He witnessed on the fluoroscopy – pretty much like a moving, real-time X-ray – that the vein in which the catheter was placed was spasming. It was cramping around the catheter, forcing it out much in the same way as a woman who goes into labor. It cramped rhythmically, forcing the catheter back out the way it came in, to such a degree that it was as if the catheter had met a dead end. It could not move any further.

    They think that afterward, when I started getting sore, that my veins were spasming again, only this time without a catheter to cramp onto, the cramping kept getting worse. Until it almost completely blocked off the vein, which is the direct route for return blood from the brain. And if the return route is blocked, the arteries supplying blood to the brain are limited. So essentially, my brain was shutting down due to starvation.

    But that’s just one theory. And according to some specialists and doctors I’ve spoken to this past weekend (and I’ve spoken to more than I can count…), there are some holes in that theory. They don’t think that starvation of that sort would have generated the kind of neurological problems that I was having. So there was another theory.

    At first, when the clot was found on the end of the IV port in my chest, the doctor tried to dissolve the clot to help clear out the IV port and get it working again. There’s always a risk with such procedures that part of the clot could break loose and travel through the bloodstream. And on top of that, the doctor said that as he witnessed the vein cramping around the other catheter, that it was also clotting faster than he had ever seen anyone clot before. So there were two opportunities for a blood clot to travel from my chest and into my brain.

    Essentially, there’s a high chance that I had a stroke on Thursday. Granted, a somewhat mild one, but believe me when I say I am still feeling the effects. It was only yesterday that I was finally able to speak anything like myself. On Sunday, when I woke up, I was so convinced that it was Saturday, that it took me 15 minutes to wrap my head around the idea that it was actually Sunday. It took me almost the entire day before I was able to regain my memory of what I had done on Friday. Any and all trace of that day was gone.

    My headache has persisted to varying degrees since Thursday night. Occasionally, I still get stabbing pains in my chest near the IV port. And I have to say, I’m not happy. As I laid in that Emergency Room, thinking about everything that I’ve gone through in the past twelve years, for the first time in my life I truly felt anger about my condition. I was so mad, so upset, so distraught. All I could think was, as they were discussing emergency central IV line placement and any number of other horrific emergency procedures, all I could think was, “How am I going to do this?” I just don’t feel like it’s possible anymore. For a while, everything seemed as daunting as I could ever imagine it being. Every fat cell in my body was attacking me, there were concerns about my liver becoming another victim of the Dercum’s Disease, and then there was all that swelling and complications that arise from that.

    And now this. Now my veins are taking sides, decided to go on the offensive more so than ever before. And my brain. I can’t handle that again. My biggest fear ever since I was a small child was the idea of losing my mind. I thought I could handle anything, so long as I still had that. I had to face that fear when I was 16 and I dealt with that brain infection that left me sounding like a two year old. I still don’t know how or why I recovered from that, but every day I’m grateful that I did. After experiencing that again on Thursday, and now knowing why or if it’ll happen again.

    It’s too much. It’s just too damn much. How can one person take so much of that? How many years is it going to be like this? Is this cycle of getting so close to being well again, only to get ten times worse ever going to stop? Is my life ever going to be anything but this? That answer is looking more and more grim with every day and I’m just so tired. So damn tired.

    People keep asking me what they can do or say to help. And while I appreciate that, I really do, there really isn’t much anyone can do. Words can’t fix this anymore. Words aren’t going to change the fact that after only 23 years, my body is so against me that it appears to be shutting itself down. Nothing can change that anymore. Nothing can fix it.

    A stroke. I still can’t wrap my head around that. I’m a child, for heaven’s sake. This shouldn’t be happening.