Each day, we have a new chance to rewrite our day from the learned experiences before. We have the chance to pick out what clothes we are going to wear, what food we will eat, how big our smile will shine and the interactions that we have. Let me rephrase this; although we may not have a say into the interactions that we have on a daily basis, we DO have the opportunity to choose how we view these interactions and move forward. How we allow them to affect our lives day in and day out. These thoughts have rung true for me over the last several months, as I truly look into the relationships that I have and the daily encounters that I experience.
After my Retinal Vein Occlusion, or my eye stroke if you will, in July, life has not skipped a beat. Partial vision loss in my left eye made for some adjusting. I was experiencing symptoms which I had never encountered before. I was completely unbalanced and felt as if I was learning to walk all over again. I had these splitting headaches which would leave me feeling debilitated. Then, I found myself passing out from the extreme amounts of nerve pain. Matt and I felt that we were completely in over our heads! On July 18th we had a post-hospital follow up visit with my primary doctor. We explained all of my symptoms, but we were stumped. Yes, there would be some adjusting to vision changes but not all of my symptoms were lining up. So, we ran labs just to cover our bases. Over the last few weeks I felt that my body was off, despite the obvious changes with my disease. Prior to the stroke, we had been trying to conceive, but once we had all the exposure in the hospital we were CERTAIN that the possibility of conceiving was slim to none. However, I still took tests. I took MANY, MANY at home pregnancy tests. Still nothing! However, on that same day of my appointment, something told me to take a pregnancy test when I got home. Would you believe it? That test lit up like the Fourth of July sky! I was bawling, shaking and honestly in a complete in a state of shock! We are pregnant. WE ARE PREGNANT!
At the time, Matt was at the gym. In my moments of panicking, aimlessly walking back and forth in our living room, I had the split thought of; “crap! How am I going to tell him!?” Being the “romantic” that I am, I knew I had to come up with something quick. Matt deserves a cute announcement! Grabbing our unopened bottle of special edition Makers Mark for the Kansas City Royals World Series win (#GOROYALS!), I quickly made my own little title; “Baby Makers 2018!” Being sure to not open the bottle, as we were saving this for the next Royals World Series win, I poured Matt a very generous glass of bourbon and placed it next to the bottle. Just then, Matt pulled up. Shaking with tears of excitement in my eyes, I was sitting anxiously on the couch. Matt walks in, glances at me then glances at the bottle, uttering the first words of, “did you seriously open that?!” As I’m giving him this half oh crap, half oh my goodness smile, he walks around the living room table. “You’ve got to be freaking kidding me!?” Looking at me with those baby blue eyes filled with tears, “Really babe? Are we really pregnant?” Confirming, we both hugged just before we both entered, and re-entered, panic mode! Thinking about all the exposure that the baby would have had in the hospital with medications and tests. I then sent my doctor an S.O.S. email, which she then promptly calls me from her cell. She calms both of us down, saying that the baby will most likely be okay. Then stating that she was going to contact the lab to turn one of my tests into an HCG test. The next several days were excruciating as we waited to see the HCG results. Sure enough, 2 days later we got a call from the office stating that the HCG tests showed that I was roughly 7 weeks along. SEVEN WEEKS ALONG! That means that the entire time I felt something was “off,” we were adapting to my symptom changes, but we were also pregnant! WOW! What a miracle!
The next few months were a bit of a blur. We continued to cope with my typical disease symptoms and recent vision changes, continuously trying to find our new normal. My inflammation eye specialist was quite honestly shocked by the improvement in my vision. Stating he hadn’t seen this type of improvement in any of his CRVO patients. We considered this a victory! Within this time, we also started our OB appointments, even saw the heartbeat for the first time! I began back to work, but still adjusting my ever-changing symptoms. I honestly didn’t feel pregnant and part of me had a hard time accepting the pregnancy because of all that we had gone through. Losing our first baby in March, I didn’t want to become too attached to this baby. Not yet at least. Then with all of the changes that we had gone through with my disease, it was very hard for me emotionally. I felt as if I was in this glass box, just watching my life spin around me without grasping a full understanding. Matt and everyone around me was so excited about the baby, and I felt this emptiness just trying to accept it. I felt myself slipping away from friends, losing my train of thought and at times struggling to push forward. But as the weeks went by, it did get easier. Matt and I found a sense of understanding for our life in that moment. We were trying to focus on us and eliminate any additional stress. We went on a much-needed trip to California where we were able to celebrate our anniversary, and honestly, celebrate this very challenging year. By this time, we were 12 weeks pregnant. Hesitant, we felt it was time to share our news with our family and friends!
A week after we got back we were so consumed with the trip and finally sharing our news! That week I started experiencing some pretty intense nerve pain and low-grade fevers. At first, we treated them and didn’t call the doctor. We wanted to see if it was just a fluke from the stress of travel. After a week went by with intermittent fevers, my temperature started to spike. I had just begun seeing my Rheumatology-Pregnancy specialist, which would follow me throughout the duration of the pregnancy. Contacting her with the temperature spike, she wasted no time in sending me in for admission. Fevers, headache, stiff neck, back pain, nerve pain… I was most definitely in the beginning stages of a flare. Absolutely beside myself worrying about the pregnancy, but also knowing that we were really early in a flare to be going to the hospital, I could not handle it. Matt had to calm me down before taking me in because I couldn’t process the thought of potentially losing our child because of this monster.
After we went in, we found that my specialist had left specific instructions on what to test and how to treat. Any rare patient going into the ED, it’s always driven with so much anxiety. They look at you as if you don’t know your body; yet they want to treat you like the guinea pig, that really, most of us are. After receiving my 9th spinal tap that evening, the doctors were practically gleaming with joy that I didn’t have Spinal Meningitis. Meanwhile, you look at our faces and we aren’t even phased. “Doctor, with all due respect, we know it’s not Meningitis. This is just my disease pattern.” The ED doctor stared at me puzzled. She then continued stating that they were going to send me home and I could talk to my Specialist the next day. Shaking out of anger but politely stating; “I understand that my case is not like any others that you’ve seen. I understand what my blood counts look somewhat normal right now, and I am overjoyed that my 9th spinal tap is negative. However, if you think that I am leaving this hospital tonight without any answers from MY specialist, then you are highly mistaken. I am not worried about pain management, as you have recently stated. I am worried about my flare amplifying and my fever spiking to the point where it does affect my child. So, at this time, we need to figure out if we are getting ahold of my specialist at 11pm, OR we need to figure out where you are admitting me.” Still shaking, I felt like I was staring into the eyes of a deer struck by headlights. You see the thing is, I didn’t mean any disrespect when I said this to this doctor. She was a very nice lady! However, they don’t get it. They have not seen how bad my flares can get, they do not see the pain that I experience when my legs literally shut down and they aren’t looking past the text book. I am never the text book. So, September 20th I was admitting into the hospital for another flare.
It was becoming apparent that my disease was not going to take a backseat to this pregnancy. As our baby grew, my tummy got bigger and my disease symptoms continued to amplify. During that hospitalization, we did come up with a game plan. Higher immunosuppressant’s, high dose steroids and really starting to slow my roll! Out for two weeks, I then started back for my first full week back at work. I was beyond exhausted. Brain fog was at a maximum high, I couldn’t sleep at night because my pain as so intense, I had fallen multiple times and twice down the stairs since my hospitalization. I was still experiencing mini-flare symptoms through the new dosages, and we had no idea why. That next week I had another appointment with my specialist. I feel like many of the rare patients have that one (or two) doctors that they will never forget. The one that changed the course of their disease. She is definitely mine! She sat me down and explained that I was pushing myself too hard. I was trying to be normal and right now is not the time. She explained that each mother has a point in their life where they go from thinking independently, to thinking like a mother. Teary eyed, she explained her own personal experience with me then stated that unfortunately, as much as I want to fight it, my time has come. The time to put my child first and really care for my disease. It was at this point that she put me on a leave from work. She asked me how much I thought I could work, naturally I say 20 hours a week, part-time. She looks at Matt. Matt looks at me then shrugs. Then she states, “You’re going to work 10 hours a week, without direct contact with children.” I lost it. This is what I knew! Besides researching my disease like it’s a hobby, my kids were my escape. How would I do this to them? How could I do this to my employer, my colleagues, my friends? I felt heartbroken in so many different ways. With some OUNCE of hope, I convinced her to “re-evaluate” at the end of the month. But in my heart, I worried she already had her mind made up.
The days were hard being at home, I felt so isolated and lonely. My symptoms were still amplifying and there wasn’t much I could do to alleviate them. I mean let’s be real, Tylenol can only go so far! I pushed through, anything to distract myself. Called my mom a multitude of times each day, bothered Matt with the silliest of things, worked on marketing from home, started to try to get into the whole mommy thing with planning the nursery. Unfortunately, mid-month, I learned through my FMLA paperwork that I would not be going back at the end of the month, and I was in fact out for the duration of the pregnancy. Although I was saddened, I was not entirely shocked. Within this month, we also had the anatomy scan at 17 weeks, where we found out the gender! Despite my strong feelings of a boy, we found that we are having a baby girl! Our Edith Winn, Sweet Edie Winn! I don’t think I had ever seen Matt so worried and giddy all in one setting! We are having a baby girl! And we are excited! I could slowly begin to feel this shift of focus, and it felt like a huge relief.
We had established a new approach in order to eliminate medication. Although we were to a point where I was beginning to feel stable, we also needed to switch things up to maximize Edith’s health. My specialist decided to taper my immunosuppressants and prednisone so that exposure wouldn’t be as intense. With this, she explained that I would begin feeling more extreme pain. Unfortunately, this was something that I had to learn to cope with. The tapering needed to be done, and although no one wants to be in pain, the timing was crucial for Edith.
Not too much time went by before things became even more rocky. Although I was to be eliminating stress, we had been planning on attending my best friend’s wedding for months prior. Feeling somewhat stable leading up to the wedding, we went forward with flying to St. Louis. Despite some typical symptoms and some vision changes, I was feeling fairly well! We delayed the taper for a week so that my body wouldn’t be under more stress. In St. Louis, I was paying close attention to balancing wedding activities and resting, I felt like I had a firm grasp on what was going on. That Friday evening, I began experiencing numbing on my left temple. Assuming it was due to a possible impending headache, I brushed it off. The wedding came, I cried as I watched my best friend walk down the aisle. I laughed as I watched my husband dance like a fool! And I embraced every moment that I could, knowing that would be my last visit to Missouri until after Edith was born. Saturday night we went to bed somewhat late. Sunday morning, I woke up and something had clearly changed. I felt completely disoriented and the numbing sensation had migrated to more of the left side of my face. I knew it was time to finally tell Matt because this clearly was not a headache. We decided to keep it to ourselves as we were going to be saying goodbye to our friends, then visiting with family that day. Later that morning I found that my family had planned a surprise shower for me! Completely stunned, I was an emotional wreck as I stared at the faces of those that I held dearest to my heart. That was a good day! However, I had this weird feeling in the back of my mind the whole time. “Don’t let anyone know, don’t let on that something is wrong.” Monday, we flew home. As soon as we landed, I was on the phone with my specialist’s office. Unfortunately, I was unable to reach my specialist on Monday, so I called again on Tuesday. Still no response. By Wednesday morning, I woke up and the entire left side of my face was numb with a notable difference in the vision in my left eye. It was if I was looking through this hazing cloud, where the colors weren’t as vibrant. I became an emotional wreck. What if I had stayed home that weekend, what if I had pushed and called my doctor sooner? But the thing was, the story was written. I couldn’t change what had already been done; I could only push forward, find answers and as always, advocate for me AND Edith. That day I found that I was unable to get ahold of my specialist due to a convention that the doctors were in. Thankfully the nurse in her office suggested that I get into my primary care doctor. (The same one that received the S.O.S. email about the pregnancy a few months prior) Seeing my primary, whom I’ve become to adore, she had no hesitation on sending me into the hospital. Almost certain it was not a stroke, she did not want to take any chances with me being 21 weeks pregnant. Thankfully, Matt and I had previously established a plan with my High-Risk OB doctors if a flare were to arise. Completely bypassing ED, I was go to up to the Labor and Delivery floor as we established in the plan. This alone took so much stress off the situation.
After calling several departments to the L&D, they found that it was in the best interest to admit me because once again, we had no idea what was causing my symptoms but I needed evaluation. As they send me in for an MRI to rule out a brain infection and stroke, I’m lying on the table listening to The Lumineers. I feel tears rolling down my cheeks as I’m praying for an answer that everything will be okay. Then I feel these rumbles in my abdomen. My sweet Edie Winn has come out to play! As she rolls around in my tummy, I only assume she’s wondering what the obnoxious pounding of the machine is. Just then, my tears of fear turn into tears of joy. SHE is the reason I am fighting in this moment. SHE is the reason why despite all of our setbacks, I will continue to push on. SHE is now my everything.
We were hospitalized for three days. The numbing persists and actually migrates to the bottoms of my feet. My vision hasn’t improved and my joints are hurting worse than before. Rheumatology, Neurology, Ophthalmology and High-Risk OB visit every day. MRI, EMG, test after test, eventually, they start falling off, walking away as their scratching their heads. They established that either 1) An unknown viral infection has moved into my nerves causing for a progression in nerve damage. Or, 2) And honestly the likely of the two, my disease has progressed into my nerves and now causing for more significant nerve pain/damage. Regardless, my nerves are shot, quite literally! So, the team placed me on a week of high antivirals in case it is option 1. And if its option 2, then unfortunately, we will have to see how long this nerve train rides until I get the feeling back in my face.
On my last day of this hospitalization, I had the pleasure of meeting a very special woman. She is a High-Risk OB doctor who came rushing in apologizing to me because she had an emergency C-Section. She sat down on the side of my bed and simply had a conversation with me. Being the emotional basket case that I am on any given day, I started sobbing. She asked me why I was worried. I stated that I was overwhelmed with this pregnancy, but more so, my disease with the pregnancy. I stated how I am relieved that we feel Edie is not going to be affected by my disease. However, I worry about the future and how I fear my daughter will resent me because of my disease. I explained that although I know Edith will be loved to the greatest capacity of our hearts, I know there’s going to be a day that she’s going to see something is different with our family. The doctor held me as she explained that she had no doubts that Edith will be in the most enriching, loving family. Although our family may be different, each family is unique and different in their own way. She continued to explain that some of the healthiest babies she delivers are from some of the most ill mothers. She also pointed out that she can already see that my baby girl is such a fighter. With my eyes feeling something equivalent to a waterfall, I knew in my heart that she was right. Edith is my fighter. We make a team together! I hugged the doctor and explained that I feel Edith has been a miracle to us in more than one way. Yes, she has fought so hard and still thumping around in there with a crazy strong heartbeat! But, she has also allowed for so much insight to my disease. Had it not been for this pregnancy, I really do not feel that my symptoms would be this intense. So, although she is a miracle to Matt and I, especially after all that we’ve been through in our journey. I definitely wouldn’t have the specialist that I do, and we wouldn’t be making the great strides that we are in moving forward with a diagnosis. For its because of her, we have been able to see this disease at its most rigorous points. She has allowed us to see this disease in a different light and has been the blessing to me in the fight against this disease!
So, yes. Every single day we have the opportunity to re-write our day and our experiences from the days before. We have the opportunity to either put on a smile, or not. We have the opportunity to brighten the lives around us, or just go about our business. And most importantly, we have the opportunity to look at every interaction that we have and truly think to ourselves; “why was this person put in my path?” I have, and always will, believe that we are placed on our own paths for a reason. I’ve said it before, and I will continue to say it again, every single person comes into your life for a reason. You may not fully grasp the understanding in that moment, and maybe you never will. But your interaction with each person could affect your life and it could very well affect theirs too. I am blessed for my experiences and my interactions, although at times some may seem like a burden rather than a blessing. I do not always have the easiest road and believe me; some days are harder than others. Some days, I cannot stand my disease! And others, I am proud. However, I will say that every single piece of our puzzle leads to the bigger picture. For these interactions and these experiences have made me stronger. They are preparing me and my family for something greater, and that alone is the greatest gift of all!
Love and great appreciation,
The Rare Momma
For More on Kathleen Ann’s Journey