There comes a time in your life when you have to sit back and watch how quickly the world is spinning around you. You stop, as everything is swirling by, just to grasp the pure reality of controlled chaos. You begin to realize that although an outsider may view your life as out of control, unstable or simply a disastrous storm; you so humbly stare at it square in the eye and embrace each moment with grace.
The last 6 months have appeared to be a disarray. Since my flare in January, it feels as though we have been running into brick walls every so many months. At a point, you become exhausted. You want to give up, but know damn well that giving up is not an option. So, you take it with stride. You embrace the small victories, and you challenge the hardships.
In February, my husband and I were delighted to find that we were expecting our first child. Delighted, shocked and honestly overwhelmed, we embraced the surprise with open arms. Although we had a rough couple months after my January flare, we were thrilled and hopeful this was the light at the end of our tunnel. Like any new, expecting parents, we began planning. We made sure we had all the appointments lined up. I was scared because I wasn’t sure how my disease would affect the pregnancy, or vis-versa. So, I researched and researched. I went to appointments, I made countless calls just to ensure that I was taking care of my baby to the best of my ability. We were dreaming! We were dreaming of what our baby would look like, constantly talking about names, or which birthing method would be ideal for our situation. Naturally, I began planning the nursery and stalking Pinterest for all things elephant. Although it took time to process, we were genuinely happy and embracing every moment.
At my 8 week appointment, we were filled with joy. We were so ready to hear our sweet babes heartbeat. Matt held my hand as we walked in, making little jokes here and there just to pass the time. We did not however realize how quickly our demeanor could change with a few short minutes. Beginning the sonogram, I saw it on the doctor’s face. Almost instantaneously. I could see the tears swelling in her eyes, I could feel my heartbeat racing a thousand beats a minute. Palms sweating, I remember my husband squeezing my hand, telling me it’s okay as he fights back the tears. Our baby didn’t have a heartbeat. Our joy was crushed.
Over the next several weeks, I felt a series of emotions. Given I had never felt this type of pain, I wasn’t sure what was normal. I pushed people away when I knew I needed them most. I knew that in that moment, Matt and I needed to lean on one another and really, that’s all that mattered. We were heartbroken. Devastated. How could such a miracle turn into a tragedy in such a short period of time? We pushed through. We made sure to follow all the recommendations, we had the D&C and we really took time to reflect on our life and the obstacles that were being presented.
Time went on. We were still managing our emotions, but we felt at peace knowing that there was a reason behind it. We knew that our sweet babe was in heaven with our family, and that reassured us. We were determined to continue trying, but needed to make sure that my body was healthy enough to conceive. Continuing tests and treatment, we went to routine appointments. There was consideration and fear that I had a disease that caused clots, therefore, causing spontaneous abortions. My mind was overloaded. We spoke with many specialists regarding my disease, as well as specialized doctors to help with conception. We learned to accept the phase we were in, and we were embracing every moment. We enjoyed our moments together, we embraced our happy times and really embarked on this new journey.
Over the course of the next two months, we were maintaining somewhat of a normal life. In the Spring, we learned that there were serious health concerns with a close family member and this was our priority. We had everything in line to be there at the drop of a hat to provide support. The determination, fight and overall grace of this individual was an inspiration to all of us. We kept the faith, and we continue to stand beside her to help rally. I have learned that life doesn’t just come in ripples, it comes in full on tidal waves, testing your every nerve. But this was not going to hold my family back. We band together because that’s what families do. We hold one another when one feels weak. We love one another with the entire being of our existence!
Continuing to vigorously work with rheumatology to continue to search for a diagnosis, changing up medications to meet the needs of my symptoms and managing daily, normal life. We found that my mobility was severely weakened and it was becoming difficult to walk. Fighting for answers, we researched every possible solution. Meeting with doctors, we found that the cause of my immobility was in fact due to severe nerve pain. In the evenings, my body would be exhausted to the point where I was unable to walk. With my husband carrying me upstairs every evening, I was frustrated with the turn in my health. I wanted to be “normal,” I wanted to be able to go about my daily routine independently without always relying on someone else. I felt this constant embarrassment when I could barely walk down the hall at work, with my colleagues asking me if I needed help. I was fully capable of accepting the help, but my pride was standing in the way. I wanted to be independent. Thankfully, we quickly found that my lack of mobility was caused by my nerve pain in my legs. Once we were able to identify the issue, we could start treating it. Within a matter of days, my new medication was giving me more mobility than I had experienced in weeks. I was so relieved!
My husband and I were in such a great place. Like any family; we were planning summer trips, embracing the sweet summer sunshine and challenging ourselves with a new workout routine. Which, was a huge accomplishment for me because my mobility and joints make working out difficult. So being stable enough to work out is actually a very huge victory! On June 29th, we had a normal day and we were to meet at the gym that evening. Our type of work out is high intensity kick boxing, because honestly, who doesn’t love kicking the crap out of a bag? Each circuit is 3.5 minutes, containing different types of work outs. I was in my third circuit when I became dizzy and light headed. Assuming I just needed to step away, I grabbed a quick drink and returned. The next circuit, I was working one on one with the trainer when I began noticing that there were black circles all over her face. Explaining that I was dizzy, I walked away for another drink. On the next circuit, I was completing my reps on the bag. I began seeing tunnel vision, when my left peripheral vision disappeared. Falling to my knees, I began holding my head and rocking trying to ease the intense pain in my head. Something was seriously wrong.
After this, the series of events become somewhat hazy. I remember my husband and my trainer walking me to the car and laying me in the back seat. My husband states that I was in and out of consciousness as we drove home, only waking up when he would throw water on me. Once we got inside the house, he worked to cool me down. Assuming it was heat exhaustion, we took all the necessary steps to calm my body down. When I became more coherent, we found that my left arm was numb, my head was pounding and my vision in my left eye had this lacey, gray overlay making it difficult to see. In addition to no peripheral vision, I was becoming increasingly worried.
Over the course of the next 24 hours, I was instructed to go to the hospital due to possible neurological concern. After doing a full stroke work up, the emergency doctors then discharged me with continued symptoms. The next day, I worked vigorously to get into any kind of specialist or doctor just to have a work up. My fear was that since it was the weekend before the 4th of July, then my ability to actually see one of my specialists would be limited. Finally, I was able to get ahold of a primary care physician in my doctor’s office who really took the initiative. He knew something was wrong with my vision and he fought to make sure I got into an eye specialist. From there, I saw the eye specialist who discovered that not only did I have severe damage to my optic nerve, but the veins in the back of my eye were hemorrhaging, observing 5 different clots. Maybe I speak for myself, but I feel we all know that look. The look of concern, and possibly fear when a doctor discovers something but has yet to explain it to you. Her face said it all! Just then, my Rheumatologist called my cell during the appointment, just to check in. Coincidence, right? Suggesting that he talk to the eye specialist, you could hear the demeaner in his voice change drastically. He was calling for an emergency admit with high dose infusion steroids.
At this point, my body had stopped shaking. It was no longer a thought of, “oh, maybe my glaucoma just worsened,” or, “maybe it’s a really bad migraine and I just need rest.” No. This was it. This was my disease taking over my life, yet again. Calling my husband, I couldn’t say anything other than I needed him to get to the hospital. This sweet, kind hearted eye specialist hugged me, explaining that everything was going to be okay. She just needed to make sure that I was taken care of. So, we left. We went to the Emergency Department where she spoke with the doctors.
After a five-day admission, 4 days of steroid infusions and a whole lot of doctors scratching their heads, no one had any idea what had happened. They had ruled out a stroke. They were concerned with Multiple Sclerosis, but worked to rule that out with a horrendous 3 hour MRI. There were, and still are talks of Bechet’s Syndrome. But conveniently, my markers are just slightly off, not allowing for a diagnosis. I am the broken puzzle, still. After discharge, we had an appointment with the eye center specialists. We needed try and obtain a better understanding as to why I was still unable to see. With about 40% visibility in my left eye, it had improved since that Friday but not much more than that. Meeting with the retina and inflammation specialist, we quickly found that I had something equivalent to a stroke in my left eye. With there being a lack of blood flow to the optic nerve, the nerve became inflamed and caused for blood clots in the back of the eye. The doctors explained that they were impressed that the visibility had improved since the previous Friday, however, they do not expect my vision to improve much more. Typically seen in older patients, the visibility does not return. It was then explained that when this happens to younger patients, its due to an underlying autoimmune condition. Clearly. Because that’s how things seem to happen, right?
How am I doing? Right now, I am feeling all of the emotions. I am incredibly grateful that the situation is not worse. For example, had I gone the weekend without being seen by a doctor, I could be completely blind in my left eye. Thankfully, this is not the case. However, I am feeling a series of emotions just trying to cope with the idea that that this disease is worsening. I feel that it’s only natural to be angry and to feel as if you have done something wrong in your life to deserve this. Now, I know this is not true. However, at times it does feel like this. I am sad. Angry. Confused. And downright pissed. I want this disease to go away and I want to live a normal life. Not just “my normal.” Every day it is catering to a symptom and feeling out my “spoons” just to see if I have enough to make it through the day. I am exhausted. But, I am INCREDIBLY grateful. So often I think of how God has protected me. How He has guided me on this path, and one day I pray that I will fully understand. I am blessed to have the life that I live, and I will never take that for granted!
So please. Take my visibility. Take my mobility. Take my emotions. Please throw them all to the side and see what you have. You have me. I can be tested to the extreme, but I will remain strong, I will continue to fight and I will hold my head up high. I did not ask for this disease, but I could not see myself without it either. This is a part of me. It does not define me and this will not break me. But I am proud. I will scream to the heavens above if it means spreading autoimmune and undiagnosed awareness. We are a community. We are family. We are a unit. And we will stand together!
I am rare and I am proud.
With Love and Peace,
For more on Kathleen Anne’s Journey