New Path

It’s been a month since I last posted on my blog. Things have been very busy around here! 

After continuous Herxheimer reactions and helpless days, I decided a change was definitely in order. 

A friend recommended I go to Washington, D.C. to meet with Dr. Jemsek. Dr. Jemsek is an infectious disease specialist in Lyme Borreliosis and tick-borne infection. 

I was fortunate enough to talk with Dr. Jemsek at my initial consultation along with one of his nurse practitioners. The doctor and nurse practitioner both agreed I was a candidate for IV treatment. The 6 page list of daily medications I was taking was quickly eliminated. The doctor’s suggestion was to end all medications except Doxycycline. He prescribed Diamox, Klor-Con and Vitamin C to be taken twice a day for headaches. He started me on Neurontin twice a day for nerve pain and Trazodone and Klonopin for sleep aid. 

Dr. Jemsek’s treatment protocol is essentially chemotherapy. Considering the current state of my body and health, the doctor is afraid to start treatment at this time. He said starting treatment would be similar to trying to take a plane off from a ditch. The plane wouldn’t go anywhere and neither would I. His orders for the next month were to sleep as much as possible and to detox like crazy. He wants me to become gluten-free (help!) and stressed the importance of increased fluid intake. I’ll be traveling to D.C. the beginning of next month to get a power line placed at George Washington Hospital, a SPECT scan in Northern Virginia and receive my first dose of chemo in the Jemsek Clinic.  

I left the consultation with complete confidence as well as complete shame. I had faith that Dr. Jemsek would heal me. I felt absolute humiliation from the information overload I had just collected. Some of the information came as a total shock to me. 

Apparently Borrelia burgdorferi (Lyme bacteria) can be spread through the placenta of a pregnant woman to the fetus. The DNA of the bacteria has been found in breast milk as well. Lyme bacteria has been proven to survive blood banking conditions - however, no transmission has been proven through blood transfusions in humans. There is no proof that Lyme is sexually transmitted although preliminary studies have found positive DNA of the Lyme bacteria in semen and cervical tissue. If that isn’t enough… They’re finding the Lyme bacteria in spiders, mosquitos, fleas and lice. Ticks are no longer the sole culprit. 

The mile-long walk back to the hotel after my appointment was very quiet. Blake and I held hands but didn’t speak. I felt like a leper. I felt so guilty and embarrassed. I wanted to fall to my knees and sob. WHY IS THIS HAPPENING? We sat in the hotel lobby where I spent the next 30 minutes in complete confusion. I had several tears but no voice. I was truly speechless. 

Blake and I took an Uber to the airport. I starred out the window the entire ride; unable to look at Blake. I was petrified. We scouted a table in the back of one of the airport restaurants where we decided to sit and talk (and eat, of course). The first thing I said to him was “I’m not going to let you go through this battle with me any longer. You and I cannot be together anymore.” This disease is grim and scary and he doesn’t deserve to live another single second of it. He is the world’s best caregiver (BEST) yet I can’t accept him to be mine. He’s too good for this kind of darkness. I don’t want this disease or myself to bring him down. After I made my comment, with tears pouring down my face, Blake said to me he wasn’t going anywhere. He told me he loved me and that no matter how gruesome things get - he’s here forever. Tears pouring!

There is not one ER visit that Blake hasn’t attended. When I stay overnight in the hospital, Blake is right next to me, holding my hand the entire night. He knows when I need my oxygen mask without me having to mention it. Multiple times he has picked me up from the floor after a fainting-spell or seizure. When I’m too weak to walk, he carries me. He is a godsend. He’s MY godsend.

Blake and I certainly want to have a baby or 2 once we get married. Hearing from the doctor that transmission is possible through the placenta felt like a HUGE stab in the heart. That’s why I couldn’t look or talk to Blake after the appointment ended. I figured he would be angry. I felt like I had just let him down. CDC’s advice is that pregnant women with a known Lyme disease infection should be treated with antibiotics during pregnancy. 

Having a child, in my opinion, is the most incredible experience in the entire world. It doesn’t get any better than that. I’ve finally found MY person, my better half, my soulmate, my best friend - and I want nothing more than to someday share that incredible moment with him. My mom and sisters were present during the birth of both my girls and, at the time, that was exactly how it was meant to happen. I’d be lying if I said I wasn’t eager to have a baby with Blake - knowing I’m going to spend the rest of my life with him. There’s something so magical when it comes to family… Blake’s miraculous being has been the most perfect addition to this family of 3 - now 4!

Blake is such a natural when it comes to acting as a “father figure.” He’s so patient and calm. He’s always helping out with homework assignments and very inquisitive about the girls’ school days. He gets silly with the girls and plays with them. There’s no doubt in my mind he’s going to be the best dad/step-dad ever! This man is absolutely perfect! I love you Blake!

Back to our trip to Washington… We did a lot of touristy things on Sunday. I was so thankful God provided me the strength to walk around all day. Sunday was definitely a “blue sky day” for me - in other words, I felt alive. 

Blake and I saw all the monuments and visited all the historical sites. The weather was absolutely beautiful - it couldn’t have been more perfect! We walked along a huge lake (I think it was a lake) next to the Roosevelt Memorial. We were the only people on the trail, the water was flawless and there was not one cloud in the sky. I wish I could relive that walk every single day. The calmness of the water, the fresh air, the view, the energy I had, the man who accompanied me… It was such a wonderful moment. 

At one point I stopped looking at the water and ignored the thoughts going through my head with fear that I might start crying. I texted my mom and sisters asking for them to send funny text messages so that I wouldn’t start crying on Blake’s and my walk. They weren’t quick enough… The tears started flowing. Blake looked at me as if I were a lunatic. He didn’t know what the heck was going on - poor fella!

He and I walked to the Jefferson Memorial where we sat down and overlooked the water and the people passing. He held me close and asked what was going on. I laughed at myself for how crazy it was going to sound. I told him it was something about the day, the weather, the still water, the fresh air, the noise, the opportunity to walk side by side, hand in hand, without any interruptions, the freedom, the strength that was within me. Looking out at the water and the city was a reminder to me that life doesn’t stop. People don’t stop. The sun is going to shine regardless of whether I choose to welcome it or not. I miss life. I miss the positive emotions. I miss the appreciation of a blue sky and sunshine. 

So many times I despise the sunshine that flashes through my bedroom blinds. Why would there be sunshine if I can’t even get out of bed to enjoy it? I find myself getting frustrated with the sun. The same goes for picking up my girls from school (I hardly do it anymore). I walk into a herd of moms who are dressed in exercise clothing (probably went to Fusion or Barre), totally wired and ready to pick their kids up from school. Usually they’re discussing school events they’re involved in or plans for the weekend or what the rest of their afternoons and evenings are going to look like. I stand outside the herd looking like a hobo probably. By the time school’s out, I’m already in my bedtime apparel, exhausted from standing and waiting for the kids to be dismissed and usually so brain fogged that all I want to do is go home and get in bed. 

What’s the worst part about all of this? I go upstairs to my bed where I spend 95% of my time right now while my children hang out downstairs with my mom. She makes them their after-school snacks, gets them ready for dance, takes them to their extracurricular activities, cooks dinner, bathes them, gets them ready for school, takes them to school and picks them up from school most days, packs their lunches, etc. - all the while, I’m in bed. I can usually hear their conversations and occasionally they’ll come upstairs and hang out with me. 

That my friends - that’s tough. I feel like I’ve missed Avery’s entire second grade career as well as Addison’s 1st year of pre-school. The days I have energy are so few and far between and I can only last so long when I do feel good. I miss my girls. A lot. I miss being a mom. I miss being THEIR mom.

Since we’re on the topic of guilt… I’ve got a whole list of sincere regret I feel for certain people in my life.

1. My dad. Nobody works harder than my dad. He has such an incredible work ethic. He’s also the most likable person you’ll ever meet. He genuinely cares about every single person he works with. When he has to fire people - I sometimes wonder if he’s more upset than the actual individual he’s firing. He has a heart of gold. With that being said - I’m sure he would like to retire… When I say that, I mean like 5 years ago probably. Since I was diagnosed with Lyme disease and multiple co-infections, he has spent thousands and thousands of dollars toward treatment. My new treatment plan with Dr. Jemsek is roughly $50,000 not counting airfare, hotel stays, doctors appointments, etc. - ouch! He’s never once put guilt on me for the cost of this highly expensive disease. He’s always assuring me that everything will be ok and we’ll figure it out. I am so grateful for everything you do for me, dad! I wish to win the lottery one day and give you everything - because YOU deserve it!
2. My mom. She retired a few years ago with visions of having lots of freedom to do whatever she wanted. She always talked about joining an art class or knitting more or exercising more. She had no idea after retirement she would become a second mom to my children. She also accompanies me to all my doctors appointments… Hours and hours spent in claustrophobic rooms. She’s never once complained though. And she’s so amazing to my girls. You are the best thing mom!
3. Blake. I’ve already discussed my insecurities and guilty feelings when it comes to him. All I can say is I’m so blessed to have him in my life and to have his support and presence during these somber moments.
4. My girls. I’ve discussed them already. One thing I’m sure of - they’re going to be super tough! The things they’ve experienced throughout this entire ordeal and the way they’ve handled everything is remarkable. I just wish they would find something else to play instead of “who goes in the ambulance” and “who gets to have a seizure” - let’s hope those games fade quickly.
5. My sisters. They continue to help me every single day - whether it be picking up my girls from school, coming by the house to offer company, staying with me in the hospital, getting me out of the house for a few hours, daily texts to let me know they’re thinking of me, etc. - they’re incredible. I have the most amazing, supportive sisters! 
6. And to everyone who has witnessed my fainting-spells and seizures. The times when I black out for minutes at a time. The multiple 911 calls. I can only imagine how scary those times must have been for my family… Together we’ll get through this though. Without my family and Blake - this fight would have ended a long long time ago. I am FOREVER grateful for you guys. You ARE the reason I continue to fight and I will keep fighting for YOU.

To all my readers - this weekend is supposed to be beautiful weather. I ask that you go on a long walk or simply sit outside on your back porch and truly, deeply appreciate the blue sky. Or the sunshine. Or maybe the simple quiet noise the outside brings. REALLY appreciate it. Be thankful you’re alive and able to walk outside and take it all in. There’s pure joy that comes from simplicity. Find the magic in the appreciation of your surroundings.

Until next time, 

Your Lymie friend Liz