Resurfacing Pt. 2 (the free fall)
You should know that I have tried many, many times over the past few days to write this particular blog post. Finding the appropriate words to string together what exactly has happened over the last several months leading to the slow unraveling of me, my health and my life is no small task. Before I begin, I want to stress to you that my words are in no way meant as a means for pity but rather a hope for greater understanding, not just for me but for all of the people who live with diseases and conditions that truly make them question if in fact they are strong enough to rage against the ailment and fight with all their might or accept the nauseating truth that this will not just “get better” without a gruelingly honest confrontation and all out war.
Once the surgeon gave me the all clear, I started putting weight on my Achilles tendon, I felt like something was not right from the beginning. I went to physical therapy as instructed , and struggled to get relief from the pain. I went back to the surgeon multiple times, nothing seemed wrong, he just said it would take time. So i waited.
Things unraveled pretty quickly, my RA was raging out of control as I was not currently on medication deciding to wait till after the surgery to start something new. The Methotrexate had made me so sick, I didn’t want to risk getting sick while trying to recover and not being able to put weight on my right foot at all seemed like a bad idea if you needed to get to the bathroom quick! I would find myself waking up and not being able to move my left left arm or my right hand would be swollen 3 times it’s size and in horrible pain. I pushed thought it, thinking I needed to concentrate on the achillies recovery. I used a knee scooter for about 10 weeks, which meant my right knee which is the better of the two knees (both need to be replaced) carried the weight, but all seemed to be okay, no massive pain at the time. Of course I was on pain meds so I have a feeling that the damage was being done but I had no idea it was happening. Once I was putting weight on my foot and no longer needed 4 people to get me out of the house using a ramp and wheelchair, I went to my RA doc, where we discovered through blood tests that my untreated RA was just getting worse. We decided I would start Humira self injections and a couple of other support meds. I love my Rheumatoid Arthritis doc, and felt pretty good about the change. Hopeful. Perhaps if I have learned anything in my life over the last year is that hope can get you through but when that hope starts slipping away, it’s the most vicious bully around.
I woke up one day and went to get out of bed and a pain so vile, it made me instantly nauseous shot through my body, I screamed out in agony. The dogs came running, and I managed not to fall to the ground. It was as if someone took a pick axe to my kneecaps. I staggered to the chair, I sucked in my breath, praying not to pass out. This has been my life for almost two months now. Any movement of my knees at all is excruciating, walking requires a cane or crutches.
I keep a small dark blue hand towel by my bed, when I wake up, I roll it up and shove it in my mouth, I bite down brace for the worse as I fight to lift myself out of bed. The pain is unreal, I bite down, and grunt through the rough fabric. I do this for one reason, Tristan. The look on his face the first time I screamed out in agony was heartbreaking. It must have sounded like yelling from his past, a past out to get him. The terrified look in his eyes, matched mine, I knew I had to be strong for him. The towel, it helps, both of us.
Finally all of my doctors came together, My RA doctor had no idea how I continued to walk, the swelling in my legs, the pain, it is happening as a result from something much bigger. He encouraged me to get in with my primary care physician the very next day and so I did. One of the things I love about Dr. Drake is that there is lots of talking and listening and while I documented the last few months during our chat, detailing the descent of my life as I used to know it into what it is today, I felt like I gave her a perfect overview of what had happened. Then the talking was over and she began the exam, holding the cold stethoscope to my chest, then it happened…the dreaded pause. She listened again. “When did you develop a heart murmur?”
Obviously a heart murmur by itself is not always a big deal, and many folks have them but I did not have one in my post surgical physical or any other physical I have ever had. My head dropped, the salt betrayed my eyes, as tears splattered like giant raindrops on my intertwined hands placed perfectly still on my lap. I listened to my doctor who spoke with such kindness, and understanding, listening to those words fall from her mouth in slow motion. “We need to check everything, we have to find out why your legs are swelling, why your heart now has a murmur. We will do a CT scan with contrast on your abdomen to make sure there is not a mass or tumor. We will check your lymphatic system. Then I am going to order an electrocardiogram to rule out any valve problems. I promise we will find out what is happening.”
I thought I might throw up, but I didn’t. I just sat there starting at the taped up light green sign hung on the plain beige office wall. The one that says you must give 72hrs notice before you can get refill prescriptions. I looked at each word, counted each letter, I squinted slightly and let everything blur together. That felt about right, a true representation of how I currently felt, well that and the terror of my good old friend who slowly started to appear, that friend would be Mrs. “What if…”
We will know more soon. I am hopeful and most of all grateful that no matter what happens, I am lucky to have wonderful doctors, and good insurance. I work for a company who is more compassionate and generous than you can imagine, and most of all my beautiful family of friends by my side. One day at a time, squeezing in as much laughter as possible, trying hard to remain positive through the pain and reminding myself that no matter what, at any given moment there is always a list of gratefulness to be made.