I am going to apologize in advance for this extremely long post. The main purpose of this blog is to be a journal of my journey for our beautiful daughters. I do not want to leave anything out for them. I want them to know everything we have been through and have a very clear picture of who Patrick and I are.
So lets get straight to the elephant in the room. What happened?
Monday: The day started normal. I went to 5am NLXF and had a great workout. I went to work, went to PLC, and taught my first two classes. At the end of 1st hour, I got a call from Dike Elementary that Seeri was not feeling well. Since Patrick was at a funeral, I needed to go get her. After checking in to the office, I walked back to the gym to check my class. As I was standing there, I noticed I was starting to get a headache. If I am being completely honest with myself, I knew at this point that this headache was different. I left school, went and got Seeri, and came home to rest with her the entire afternoon. I took ibuprofen every 4 hours and my headache would subside, but would return once the dosage was up. Later that night, I had a massage. I felt much better after it. I continued to rest the remainder of the night and actually got a good nights sleep.
Tuesday: I woke up at 5:15 a.m. and immediately noticed that above my upper lip and my upper lip itself was tingly. For nearly 22 months I have woke up and asked myself, "Is today the day?" Well that morning I answered yes. Today was the day. And it was Linden's 4th birthday. I didn't want to ruin it. Having gone thru this before, I knew that I had time. I went to work and proceeded with the day as normal although I was incredibly worthless. I emailed my study hall partner and told him I was going to stay in my office 3rd hour because I had a headache. I turned off my office lights, played a few games of candy crush to distract myself, and then laid my head on my desk and fell asleep for 20 minutes. At this point, I decided to mention to Patrick that I wasn't feeling well. The next thing I knew, he was in the gym. He had picked up Linden early from school and had brought me ice cream. He asked me how I was feeling and I was honest with him about the tingling in my face. By the look on his face, I could tell he knew too. We sat there in silence trying to watch my class and distract ourselves from what was happening. He ended up leaving a little bit early to get Linden home for a nap so that she would be sleeping by the time I got home. Once I got home, I checked on them quickly and went straight to bed. I slept for four hours. This, in itself, was a red flag. I NEVER nap, EVER.
Patrick arrived home from getting the girls from school and we cancelled our previously made plans with my parents to eat at Applebee's. Within the half hour my mom had messaged me and my dad had called. In a weird way, I think they knew too. I chose to message back because I could not verbalize what I was fearing. Instead, we bribed the kids into ordering pizza from Slice and having a family movie night in bed. We took a break to sing Linden happy birthday, let her blow out her candles, and eat some birthday cake. By this point, my headache was severe and ibuprofen was no longer working. We went back in the bedroom and Linden opened her presents in our bed. Shortly after that we started the routine for bed time. I told them all good night, I love you, and gave them hugs and kisses. I returned back to my room and the next thing I knew, Patrick and Linden were standing in the doorway and she says to me, "Mommy, thank you for letting me open my presents in your bed." They walked away and I completely lost it. Every fear and worry of the last two and half years came rushing back. I could barely breath I was crying so hard. My mind was racing about EVERYTHING.
Once the girls fell asleep, Patrick came back in to our room and begged me to go to the hospital. I refused, because I am a stubborn ASS, stating I did not want to ruin Linden's birthday. He then asked me if I was at least going to stay home from work to which I responded, "I'll see how I feel in the morning." I am pretty sure he wanted to punch me in the face. My rational was that it would be much easier to go to the hospital in the morning once all the girls were to their respective places. And finally, I knew that I had some time.
Wednesday: I woke up at 1:30 a.m. to go to the bathroom. As soon as I opened my eyes, I knew that things had changed. I got up and realized very quickly that my balance was starting to fade and that my vision was a bit harder to control. I quickly decided it was time to call in to work. I went out to the kitchen to get on our sub system and as I looked down at the computer, I noticed it took me a while to refocus my vision. I finished and decided to head back to bed because I knew I was going to need rest for the upcoming day. I reawoke at 7 as Patrick was getting the girls ready for the day and realized that I had yet another headache. My vision was still impaired although I could fix it if I really focused. I also had more tingling in my face, specifically my entire mouth, including my tongue, my lower cheeks, and my chin. The girls all stopped in to say goodbye before they left for school and with each hug I started crying. Seeri asked me why I was crying and I just told her that I had a headache. She looked at me confused but she bought it. Linden and Myah were in such a hurry that their hugs were quick and they didn't even notice. Jaelyn was my last goodbye and by the time I hugged her I was sobbing. She asked, "Mommy why are you so sad?" I said, "You know how sometimes I tell you I cry when I am really, really happy? Well, I am really really happy that I am your Mommy." She gave me a hug and a kiss and said, "I am happy too, Mommy." Prior to Patrick leaving, I informed him that when he got back we would go to the hospital.
I laid in my bed for a while overcome with emotion. After some time, I realized that tears were not even coming out of my eyes anymore, I was just shaking. I decided that I needed to toughen up and chose to get in the shower. I immediately noticed that my balance was deteriorating quickly. I finished as quickly as I could and walked over to sit on the floor in front of the toilet. I thought that I was going to start vomiting. The next thing I know, I hear my brother, Nate's, voice from the bedroom. I answered and told him to give me a minute so I could get dressed. When I came back out, he was in the kitchen helping Patrick so I went to my bed to started putting on my socks. He returned and I lasted maybe ten seconds before I broke down crying in his arms. All I could say was, "Its time, Nate." He continued to hug me, rub my back, and calmly tell me to stay strong and keep my faith.
Nathan and Patrick continued to pack our belongings as I sat in bed helpless. I was fighting off dizziness as it was the most I had stood up for a while. We finished getting ready, got in to our respective cars, and headed to the hospital. On the way there, we contemplated whether to drive directly to Mayo or to go to Covenant to get lifeflighted. Patrick decided to call Mayo directly and inform them of what was going on. Mayo insisted, that at this point, there was nothing that they could do to treat me. Instead, they wanted us to go to the last hospital where I had my last MRI scan so they could compare all my past imagery to this scan.
We headed to Sartori and checked in to the emergency room. The nurses and doctors did all the "normal" tests they do every time I am seen for something like this. I was asked a million questions about my symptoms to this point and my IV was prepped. Soon thereafter my mom and Nate walked in. My mom hugged me as soon as she saw me and we both broke down. Nate hugged Patrick and then we flipped flopped. We were living a nightmare for the second time. My brother took care of notifying all of our family members and told my dad to come to the hospital. We were moved to a larger room to accommodate all of us and began the waiting game. My dad arrived and it was a repeat of earlier. Everyone hugged, everyone cried.
It took two hours to get a MRI because they had already had previous scheduled ones to complete. As we waited, my vision and my balance became even more impaired. Eventually, I was wheeled down by Patrick to get my MRI, we embraced, and I was taken back to the room. I had been there twice before so I knew what to expect. As soon as I turned the corner, one of my former students greeted me in the doorway. I broke down immediately. To see a familiar face in the state of mind I was in was both comforting and overwhelming. She gave me a hug and cried with me and told me she would get me the answered I needed. The MRI took twenty-five mintues. I counted the songs to pass the time to tell how close I was to being done. When I was finished my former student wheeled me back down to my family. About forty-five minutes later, the emergency room doctor came in to read me the MRI results. I knew exactly what she was going to say; my CM was bleeding again. What I wasn't expecting was that my CM had grown from 1.1cm x 1.1cm to 1.6cm x 1.9cm. I bit my lip at the news to try and stop myself from crying. I failed.
She left the room and Patrick rushed to my side and hugged me closely. He said nothing, but I said, "It grew, Patrick. It grew." He pulled away and my my mom got up and gave me a hug. As she hugged me, I told her that, "This was going to be my life forever, and that I was going to have stroke after stroke unless this thing got out of my head." To which she responded, "I know, Jamie. I know." My dad went next and all he could say was, "I love you, baby." Lastly, my brother gave me a hug and told me that I was strong and to keep my faith.
For the next two hours, we all sat in the room and waited for communication from Mayo on what to do next. My nuerosurgeon, Dr. Lanzino, was attending a conference in LA and they were having trouble contacting him. As we waited, my family and I began to discuss surgery. I expressed my feelings (which will be a whole other post, or ten) and they did too. My former student came down to check on me and asked if I had been told the results I said yes and she gave me a hug. We both just held each other and sobbed. Shortly after that, we heard from Mayo and they suggested we return home. You see, with my condition, there is nothing that can be done to stop the bleeding. I literally just have to wait until it gets so bad that I need medical attention to control the symptoms. Thankfully, I was not there yet.
We returned home and I went straight to bed to rest. My symptoms persisted, but never worsened. Patrick continued to be super husband and super dad, while I struggled to stay mentally optimistic. Soon, my best friend, Nicki arrived to deliver us supper and visit for awhile. We both broke down as we talked. And that was how the rest of the night continued, I would be fine, then I would be overcome with emotion. Especially anytime I interacted with the girls. I knew what all of this meant this time; I wasn't naive. This would be life changing.....AGAIN and I wasn't ready to accept it.
Thursday: Somehow, I managed to get a really good night of sleep. But, when I woke up, my condition had worsened. My right arm from mid foreman down was tingling as well as my right leg from mid shin down. My entire face was tingling. Panic overtook me. This stroke was going to take all of me, even my good side. There wasn't going to be anything of me left.
Patrick got the girls ready for school and brought them all in for hugs and kisses. I couldn't hide my emotion and they were all incredibly concerned. What do you even say when they ask? We did our best, explaining that I just wasn't feeling well and it was making me sad. We have tried our best to shelter our girls from my condition and focus on the good, like Do Better. Be Better . But, wow, it's hard sometimes. I pray, that this weeks events, will not be a memory for them. Thanks to our family and friends coming to our rescue and entertaining them, I am hoping that they will remember the sleepovers, movies, and special time with their cousins instead.
While Patrick took the girls to school, I wrote my post with tears streaming down my face to inform everyone what was going on. I needed help. I needed my army. I needed prayers, positive vibes, and strength from others because I wasn't finding it within myself. All I did for the next hour was read them. I couldn't eat, I couldn't move; I was an alien in my own body AGAIN.
Patrick returned home with Myah since daycare was closed and we all laid in bed together. Myah ended up falling asleep between us. Soon, my best friend, Angie arrived. I started crying the minute she walked in the room. I sat up to hug her and remember telling her that she smelled good and then suddenly an intense wave of nausea overcame me. I laid back down, closed my eyes, and began to try breathing off my nausea. I immediately flushed and started sweating. It was like my head was spinning, like a piece of clay on a pottery wheel. It was time; I remembered the feeling all too well.
Patrick walked in and I told him it was time to go to the hospital. He began to pack our belongings once again, while Angie stood by my side and brushed my hair from my face to try to soothe me.
It was time to try to get me in the car. First stop, the bathroom. Luckily.I made it time to sit down and rest my head on the counter to try and breathe off my nausea. I have no idea how long I sat there. Eventually, I walked, with Patrick's assistance, to the kitchen to sit at the island to get my shoes on. Once again, I barely made it. The only positive: this time I could feel the shoes go on my feet. Once I controlled my nausea, we made the LONG trip out to the van. I walked as fast as I could because I could feel nausea coming on. I just needed to sit so I could breathe it off. I got in to the car and gave Angie a hug. No more than 15 seconds after she released me, I began vomiting. I filled half of a bucket and puked so forcefully that it was coming out of my nose.
Patrick and I took off for the hospital and Angie stayed behind to watch Myah until my Dad arrived to relieve her. Patrick and I discussed whether to go to Covenant to get lifeflighted or drive directly to Mayo. For a few minutes we debated back and forth. I wasn't sure if I was going to be able to make it all the way to Minnesota and wondered if it would be best for me to be around a medical team. Ultimately, I decided to head straight to Mayo. By the time we would have gotten to Covenant, checked in, retold my stories, got my testing done, and gotten prepped it wouldn't have been any faster to get flown there.
The drive there was.......brutal, horrific, and something I never want to do again. It took us two hours and ten minutes to get there. The roads were a little rough and we ran in to three accidents. Every bump, turn, movement of my head, lick of my lips.....ANYTHING....made me nauseous. I spent the entire drive either puking, dry heaving, or breathing off bouts of nausea.
We arrived at the hospital and I stepped out of the van to get in the wheelchair. I threw up the minute I sat down and continued to vomit as they wheeled me in to the lobby. Patrick had to move the car up so the hospital helper wheeled me in to the lobby. I could sense she was extremely uncomfortable. She parked me on the side of the room and placed a box of Kleenexes on my lap and left me there. I just sat in the middle of the lobby, throwing up in front of everyone, as I waited for Patrick.
Once he got to me, we started the journey of trying to figure out where we were supposed to go. I continued to puke, dry heave, or wave off nausea the entire time. We eventually made it to a room and I transferred myself from the wheelchair to the bed. Thirty seconds after I settled myself, I threw up. Soon after, Dr. Lanzino's PA came to ask questions and do tests on me. I answered all of her questions with simple yes's and no's. She asked me to raise my legs, push against her, pull her, etc....all the while commenting on how strong I was. Then, came my eye check. I had to pause and gain some strength to open my eyes. I was physically exerted from the tests she just completed plus this was going to be the first time that I opened my eyes for more than 10 seconds in the last three hours. PLUS, I had done the eye tests before, I knew it was going to make me sick.
I opened my eyes and she asked me to follow her finger without moving my head. This was to measure how my eyes were working together and if they still had full range of movement. I followed her finger to the left and to the right and had to close my eyes. They were so tired, I could barely open them, let alone move them. I told her this as well, but wanted to comply. The next time I opened my eyes, with all honesty here, I didn't even try to follow her finger. I was so tired and so sick and the last thing I wanted to do was follow her finger that she was waving past my face at practically the speed of light.
Soon after we completed the tests, my transport arrived to take me to my floor. The group of nurses slipped me on the the next bed. It was actually very smooth and didn't bother my nausea at all until I went to lay my head back and the bed was too far down. Massive head rush. I managed to hold it back though. We walked all the way to China to get to my room. The ride was nearly unbearable. By this point, I had puked so much that I had nothing left. So I dry heaved the whole time instead. We made it to my room and as soon as they asked me how I wanted to get in to my bed. I didn't answer; I practically jumped out of bed and crawled in without any help. I heard a few of the nurses nervous laugh and even heard one say, "Or you can just crawl right in!" I didn't care. I needed to lay down, I needed to get comfortable, and I needed medicine....NOW. Or like two hours ago.
Of course, it took a very long time to get me settled and in to the system so that I could begin to have nausea medication. They completed all of the same tests and began to prep me for IV's. I needed fluids and medicine as soon as I could get them. I am not sure how long it took for the nurse to get IV's in me.....FOREVER, maybe?? I was so massively dehydrated that she could not find a viable vein to use. I had to have one in each arm. The tourniquet was so tight that I thought my arms were going to be amputated, she was tapping me like crazy, and she was even putting hot towels on my arms to stimulate them. The entire time I was practicing more deep breathing than I did during all four childbirths combined. I hate needles and hate IV's even more. It took all I had not to lose it all over her.
Finally, she got the IV's in me and fluids and nausea meds were started. I felt the relief almost instantly. They strapped on inflatable shin guards to increase circulation and prevent blood clots. I called them my jet packs because it sounded like they were boosting for power every time they inflated. Every single time they inflated, which was probably every two minutes, an intense wave of nausea overcame me. I never threw up or dry heaved, but I have never taken so many deep breaths in my life.
For nearly thirteen hours, I fought nausea. I never opened my eyes for more than 30 seconds. Patrick and Angie (yes, she drove all the way to Mayo to be with me because I have THE BEST FRIENDS in the ENTIRE universe), took turns giving me sips of water and trying to comfort me. At some point in time, Tom, Patrick's brother, arrived. I vaguely remember hearing his voice and I honestly can't remember if he said hello. I have never been through something so awful. This was ten times worse than my first one and all I could think about was the amount of recovery I was going to have in front of me when this was all over. And surgery.....ugh, don't get me started. For the first time in my life I thought to myself, "I QUIT. I CANNOT DO THIS." I had absolutely nothing left. I was done.
And at that exact moment, Dr. Lanzino, my neurosurgeon, walked in to my room. Mind you this was at 11:00 p.m. after he had been in LA at a major conference for three days and a drive straight from the airport to the hospital (more on this amazing man later). He rubbed my shoulder and told me a bunch of stuff about my MRI. I tried to focus and all I heard were two things: surgery was a strong possibility and my main priority is making you feel better. My thoughts: (picture me actually screaming this in my head) YES!! Sounds like a terrific plan! Instead, all I could manage to mumble was, "Okay."
The steroid worked instantly. It was pure magic. All my nausea dissipated and I was able to fall asleep.
Friday: I woke up at 6:30 a.m. I felt....good, really good. I was in complete disbelief and shock. I opened my eyes and still had double vision, but it wasn't awful. I tested my extremities, not bad. Left side was virtually unchanged and my right side only had tingly in the very tips of my fingers. All of them WORKED. My mouth and chin were the only thing tingling on my face
I was
okay. I mean, I had deficits, but hell, I'd take those over what I thought I was going to wake up as any day. And, I had to pee! I hadn't peed in forever. I felt like an entirely new person. Things got even better when I sat up and felt great and then stood up and COULD . WALK. ON. MY. OWN. Granted, I was wobbly and I was going to be entering any races anytime soon, but I could walk. I could walk. Praise God.
The rest of the day we spent resting, getting medications situated, and talking to doctors. I had my PT consult to see if I needed to have additional therapy and I passed. Well, after she made fun of me for walking too fast. I tried walking with a cane which I quickly decided wasn't going to be my thing and settled on a walker instead. Their walker was awful though because one wheel didn't roll as fast as the other so I felt super awkward using it. At least it provided me some extra balance though.
Dr. Lanzino came in that afternoon and discussed surgery with us. He recommended it, talked us through all of our questions, and we began to form somewhat of a game plan. I will write more on these conversations later. Tom and Angie also took off in the morning and my parents came in the afternoon. Once they left, we had a few more visitors and spent the night taking walking field trips around the hospital and relaxing.
Saturday: I woke up feeling great. My doctors were impressed with my recovery and we had more conversations with Dr. Lanzino. To be honest, the last one we had with him left me reeling a bit. Either way, though, we were released by noon and headed home.
Patrick's family, Jon and Angie, had the kids so we had a nice relaxing night at home and a lot of quiet time to settle in and digest everything that had transpired. And it hit me, HARD. Also, more on this later.
So, how am I now?
Physically: pretty good. The tips of my right fingers are still tingly. The rest of my right side is good. My left side is the same. My pinky and ring finger are acting like one again just like they did last time, but all of this typing is great OT for that. My face is only tingly in my mouth and chin area. My lips feel swollen, which if you know me, makes me very self-conscious because my lips are huge anyway. It just feels weird when I talk or smile. I still see double sometimes. If I look far away, I see single. If I look at my phone, I see double, although it's almost focused. It also takes awhile for my eyes to catch up when I look different directions. I move them and it takes a few seconds for them both to track the same way and settle in to one image. Because of that, I have continued to cover one eye, just because I don't want to put any unnecessary stress on them. I am not sleeping either. This is a combination of meds I'm on and not being able to turn my head off.
Mentally: I am a hot mess. I am not going to deny it or hide it. This. Is. Hard. And that's an understatement. This is the most I have been tested in my life thus far and I fear that I am going to be tested so much more. I am terrified. So, so much more to come on all of this. I hope you are all ready to read a lot of blogs.
