On January 19th, 2009, I woke up not feeling so well. I was still tired, my muscles were achy and I just felt, well, blah. Considering it was Martin Luther King Jr. Day, I had the day off, so I went back to sleep. I awoke at some point later, still not feeling well and noticing that I had just a tiny bit of pain when breathing. I hadn’t wanted to waste my extra day off sleeping but I had no desire or energy to do much else, so I just loafed on the couch. My then fiancĂ©, “J”, who works second shift and therefore sleeps during the day, woke up at 2pm. By the time he left for work at 3:30, my complaints had grown to having a little more pain and just not wanting to move. I continued to rest but I noticed that if I got up to get a drink or climbed the stairs to use the bathroom, I got somewhat winded but would feel better after resting for a while. I began a ranting monologue in my head, mentally checking off my list of symptoms. Muscle aches? Check. Fever? Low-grade. Stomach trouble, headache, any other flu-like symptoms? No. Ok, well, that’s not much to go on. But then, why do I feel so crappy and why do I have shortness of breath? I had so much going on at work that I just couldn’t afford to be sick, especially if this was going to turn out to be pneumonia. Or how about pleurisy? No way! I can’t have that. I am just going to rest and if I still feel this way in the morning, I’ll go to the walk-in clinic early and go to work from there.
Then things went from bad to worse. I had stopped hiking upstairs to the bathroom. It just wasn’t worth the exhaustion, the twinge of pain behind my shoulder that felt like someone was stabbing me with a hot poker, and the dizziness. The last time I went up there, I had started to feel a little disoriented. Things weren’t making much sense in the way that every little thing, every thought, every idea, every bit of logic was all scrambled in a hazy patch of fog in my brain. I had to sit at the top of the stairs for what seemed like a good 15 minutes or so before making the long journey back down those steps, back to my pillow and blanket on the couch.
For those reading this that are thinking to themselves, “Excuse me, big dummy, shouldn’t you sending yourself off to the hospital?” I say this: denial is a powerful thing. And I am a ridiculously stubborn gal sometimes. I was determined not to let this get the best of me. I had a pile of things to do at work and a manager who would find some way of making you question your judgment in taking a day off, needed or not. She had a way of making you feel disappointed in yourself that was hard to overcome and yet, not a word would be said to you about it. After all, I had just been out sick for 2 days 3 weeks before when I went to the ER with pain in my left calf. Since then, I had been hobbling around with an orthopedic cam walker (boot) and had physical therapy 2 time a week for what the ER had said was an Achilles tendon tear, though the pain in my leg hadn’t been as sharp lately. Besides, feeling this bad, not only could I have not driven myself anywhere at this point, if I could have dialed 9-1-1, I don’t think I would have had the breath to say “hello.” Also having just visited the ER, I hadn’t wanted to seem like a hypochondriac.
At this point in the night, I had decided that I may actually have to give up the idea of work the next day altogether and just hold on until I could get to the walk-in clinic in the morning. Disappointed Manager would have to just deal with it and I would just have to get over whatever disappointment I felt within myself. “J” got home around 2 am, I believe. I hadn’t moved from the couch in at least an hour, was a little less disoriented, but still didn’t feel fully in control. The pain seemed to be getting worse, and the breathing was the same. He came and talked to me for a bit, trying to help me decide what to do. I decided to get up and go to the kitchen. The distance from my couch to my island counter in the kitchen is roughly 12 feet. In those 12 feet, I realized just how short of breath I still was. And I was absolutely exhausted from having moved that short of a distance. I somehow managed to communicate to “J” in fits and gasps, that I thought it was time for the ER. “J” pulled the car around and managed to get me settled in. The hospital is about 15 minutes away and in that time, even through the fog in my brain, I realized how dumb I had been to let both work and my pride let it get this far. Oh dear hindsight, I adore thee.
I was immediately taken in and given oxygen. When the attending ER doctor saw my boot, he decided to order a few tests, including an ultrasound for my leg and a CAT scan for my chest. He said he was just checking for blood clots in my leg and lungs, but it was just precautionary. The nurse who came to escort me to the CAT scan (oxygen and all) was less than pleased to be saddled with me. I’m sure she thought I was just another victim of the flu using the ER as a walk-in clinic. I didn’t expect roses and songs, but she was very short with me and rather rude. She prepared me for the CAT scan and then left the room to begin the test.
I firmly believe to this day that she read the results while she was out of the room. The time had come to collect me and escort me back to my bed back at the ER. Suddenly, her whole demeanor had changed. “How are you doing, sweetie? Are you comfortable enough? Would you like another blanket? Is there anything I can do?” Someone felt guilty, for sure. That’s when I knew I was in trouble. The once Nurse Ratched wheeled me back quickly, but with great care, speaking gently to me along the way. She settled me back in place and left, wishing me well. I was scared silly.
A while later, the doctor came back with the news: the Achilles tendon tear was really Deep Vein Thrombosis and it had broken apart and had lodged in my lungs. A pulmonary specialist was called in and after more testing, it was determined that I was lucky in that the blood clots in my lungs, bi-lateral pulmonary emboli, had first passed through my heart and though one chamber of my heart was damaged, the damage was minimal. In time it would heal, but the important part was that the blood clot didn’t lodge there.
I guess I still didn’t realize how sick I was. My mind had created a scenario in which they would give me medication, I stay home for a day or two and go right back to work. I expressed my hesitation about not returning to work. Her next words I remember so clearly that they still haunt me, “If you leave, you will die.” She then went on to explain everything, how she blamed birth control pills, how I would walk out of there if I did everything they said and just let them take care of me. She informed me that I was mere hours from death’s door and to consider myself lucky I got there in time. I was hospitalized for one week and on continued medical leave for another two. By then, I had improved enough in her eyes to allow me to go back to work as my administrative position would allow me to sit.
Since then, so much has happened. I was on blood thinners for one year. Eventually, that one chamber of my heart caught up and is now in time with the rest of the beats. My lungs healed for the most part, although bending over for longer than a couple of seconds makes me feel like my body will explode….and humidity? Forget it. I have since been diagnosed with Fibromyalgia, have had multiple surgeries resulting in a hysterectomy in order to correct reproductive issues, and arthritis, which is almost disabling on the worst days and still painful even on the best. I tell you these things because it seems to be that a decent amount those afflicted with DVT’s/PE’s have all been diagnosed with many of the same issues within a couple of years.
There are decent days. There are really bad days. I am in some sort of pain most of the time. Even when I am having fun, the reminders are still there. And even though the cause of the DVT’s and PE’s has been removed from my life, the fear of what happened and it recurring is still there – and may always be.
But I survived. Many don’t. I have learned from this. I have learned to listen to my body and to trust it. I have learned to not care what others think about my need for a day off, if my body calls for it. I have learned to not let my need to not disappoint others take over. I now know there is nothing more important than how I feel about me, though I still do tend to forget that from time to time. One of the hardest things to fix is yourself.
It has been and continues to be a long road for me. But the point is, five years later, I’m still on it. Good days and bad, I’m still here. I. Am. Still. Here. I looked death in the eye and flipped him off.
So, Happy 5th Anniversary to me. Pain or not, I’m still looking up. It can only get better.