Updated: Jan 10
At this moment, reflecting on 2019 does not bring a lot of joy. But it is important to remember those words "at this moment". I was able to see a client this morning but spent the rest of the day in bed too weak to function in any capacity. A year ago I felt healthier than I do today and I was still recovering from my hospitalization. At this point last year, my goal was to be as healthy as possible by summer 2019. My doctor told me to expect it to be at least a year before I would be back on my feet and he was very clear that he did not mean back to 100%.
I don't put a lot of faith or trust in doctors so I was determined to be back to work and living a full life by summer, and I was willing to try anything to get me there. I had already been suffering through Guillain Barre Syndrome for two years and the thought of another debilitating year was disappointing. I have spent the past year on a variety of supplements, three different IV therapies, herbal tinctures, Chinese herb prescriptions, and detox protocols. I have done acupuncture, aromatherapy, massage, saunas, and resistance stretching. I have paid careful attention to my diet, hydration, and rest. I have done the deep inner work to reflect on, forgive, and heal past traumas because the subconscious can contribute to health issues. I have been trying to focus on healing mind, body, and soul. I really feel like I am giving it my all and I just wish the results would have been better. My health has been all over the board this year:
January: I felt like I was starting to recover and getting a little stronger. I had regained the feeling in my right leg but was still dealing with seizures, convulsions, fatigue and weakness. I wasn't able to work still so I started playing with art to keep me occupied. Every week I had to go to two doctors appointments in one day that were an hour drive each way. I would rest the day before, push myself through the day, and be bedridden the next two days. I thought I was on the road to recovery so I started dating someone and I would have my date with him one day and sleep the next two days. That was my weekly schedule! A day of doctors, two days of sleep, a fun date, two days of sleep, and then I would have one extra day to do a little art and rest up for the doctors. I debated whether or not I should really be dating since it was taking so much time and energy to just have one date, but he always made me laugh and I really needed that in my life.
February: I started a detox for the mycotoxins (mold poisoning) and it kicked my ass. I was so weak I was crawling to get to the kitchen and bathroom. On top of the fact that I was too weak to make food, I also didn't want to eat or drink because crawling to the bathroom sucked. Sometimes I would have to take a break and lie on the floor halfway between the bed and the bathroom. It became impossible to take care of myself. I had a friend nearby who would bring me food and had to come rescue me from the floor on a few occasions.
March: My friend took me in to help with meals and make sure I wasn't trapped on the floor alone all the time. It was also a shorter walk from my bedroom in his house to the kitchen and bathroom than the house I was living in, so that helped too. I started a Chinese herb prescription from my acupuncturist on March 1st and started getting a tiny bit stronger each day.
April: I was still struggling but I felt like I was making progress and knew what my limits were. As long as I was getting plenty of rest I could handle quite a lot of online work and a few errands. I have polycystic ovaries and at this point I had a cyst rupture that was excruciatingly painful. I haven't had that happen in a couple years so I was a little frustrated that I was having these issues again on top of everything else. I thought that battle was over.
May: I started the month off by catching a cold so the first two weeks were spent in bed trying to handle all the online work I had committed to. Once my cold was gone, I started feeling stronger and felt hopeful I was going to have a good summer. Some days were still rough but I started running around more and seeing clients in Boston and Falmouth. I opened my studio in Falmouth at the end of the month but decided not to promote it because my health was too unstable to make commitments with new clients.
June: Summer felt great and I was gaining a little strength and endurance. I started becoming too active though and was continually paying the price for my activities. I was definitely able to handle more physically but I wasn't getting enough rest and recovery time. It felt so good to be able to do things that I just couldn't help myself! I started having more pain in my ovaries for a week and then another cyst ruptured. At the end of the month I also mangled my big toe biking to the beach in flip flops... just to add one more ailment to the mix!
July: We started traveling to enjoy summer to the max - a week in Acadia followed by a weekend in upstate New York caused my health to decline. I was still able to push myself through clients but I was having setbacks that had me in bed for days. By the end of the month I felt pretty disappointed that I couldn't keep up with life. June felt like such a massive improvement and I had so much hope that I was healing. Then July was a quick reminder that healing is not linear. My doctor thought I was crazy to be rock climbing and zip lining and traveling in June so he wasn't surprised by the setback, but I was. When I was healthy, I could push my body through anything - I always believed that the mind was stronger than the body and as long as I had mental fortitude then my body would be capable of whatever I set my mind to. With this state of health there truly is no pushing through it and trust me, I am pretty stubborn and determined. My body becomes weak and physically unable to do anything no matter what my mind wants.
August: My health was really declining. I had a scary weekend in New York with severe weakness. I went downstairs just to get my medication and had a seizure. I was too weak to make it back upstairs (which is where the bathroom was in the house we were at) and I barely remember the four days we were there. I was too weak to hold my eyes open or speak and remained that way the whole car ride home too. It was a rough month overall. Once we get back from NY I just couldn't get back on my feet.
September: I said no more travel and really started to cut back on my activity levels. I realized I was thriving in the spring when I put myself to bed every day at 1 or 2pm - after that it was in bed activities only, so I decided to try that approach again. I was able to work part time and felt like life was becoming a little more predictable again. I knew what I could expect of my body and although life didn't feel easy, it felt manageable.
October: This month was a bit rough! I started having organ pain in my spleen and what I thought was my liver but turned out to be appendix. I spent a week in severe pain to the point even my shirt touching my abdomen made the pain much worse. I finally called my doctor and he told me to come in immediately. After examination he said I had to go to the emergency room as there could be internal bleeding and this pain level could not be ignored. Spent the day in the ER with CT scans, MRI's and blood tests that came back normal. It turns out it was a side effect of resistance stretching - they were working on my spleen and appendix meridians that Monday and I was in the ER Saturday. I still don't know exactly what happened but it was another full week before the pain subsided. At the end of the month, my doctor came back from a Lyme Conference and informed me of a new prescription that could be the cure for Lyme and Babesia called Disulfiram. I had been taken off all prescriptions last year after they sent me into the hospital and at that point he said it would be a year before we tried again, so the timing was perfect. I started reading success stories and it felt like the first time I have truly had any hope so I decided to try it. Unfortunately it can make you feel way worse before you get better.
November: I started medication with a fifth of a dose every third day for two weeks. The first dose made me super sleepy for a day and a half. It didn't seem so bad compared to the last prescriptions I was on so I felt quite relieved. But every dose I took was more taxing and I was sleeping more and more - and working less and less. When we bumped up the dose to every other day I started having seizures again for the first two days. I had my scariest seizure yet with my neck banging against the kitchen island where I had collapsed, home alone. It barely cut through the skin but it was a bit traumatizing physically and emotionally. By Thanksgiving I was in bed for ten days straight with severe weakness, fatigue, fevers, and bone pain.
December: We bumped up the medication to taking it two days in a row and one day off. Each day feels harder. The bone pain is intense, the night sweats are every night, and the weakness and fatigue are overwhelming. When I wake up from a nap it takes me 10 minutes to come to, I feel discombobulated and in a haze. December has been disappointing and I feel worse now than last year. That is a little hard on the psyche. BUT, I was able to drive home to my parent's in Maine and spend 10 days with them for Christmas. I have been physically unable to make a four hour drive in over a year and a half, so that felt like HUGE progress. It was hard but I did it and that alone made me feel like I have made true progress this year.
So as I sit here and reflect on this past year and what I can learn, how can I possibly set goals for the next year or decade? All I can do is stay present and figure out what has worked best in the past and how I want to proceed. I am taking a variety of supplements and my acupuncturist just gave me a new prescription for Chinese herbs so I'm really hopeful that will get me back on my feet. My diet is incredibly restricted on this medication so I know there is no other aspect I can change there. I am vegan, dairy-free, nut free, gluten free, sugar free, alcohol free, soy free, and no fermented or dried foods. I still go to acupuncture and resistance stretching weekly and both really help me feel better. I do my aromatherapy protocols about twice a week but my doctor wants me to do them three times. I just barely have the energy these days to do it.
The pain and suffering are completely bearable to me - that is not actually the difficult part of the diseases. The challenge is that I have ambitions and goals that my brain is constantly dreaming up, but my body has no ability to be consistent so I can't make plans or follow through on the things I truly desire. For me that is the most difficult part of all this. 2019 was still full of goodness though. I met my boyfriend last January and even though it has been ridiculously challenging to try to date with all this going on, I still feel blessed that he is willing to put up with me! I developed deeper relationships with my clients that have stood by my side through all of this. I did get to travel a bit to Maine and New York so I do have some fun memories because I made the best of each situation no matter what was going on physically. I had an ovarian cyst rupture in Acadia and was hiking with a bloody mangled toe but still enjoyed the trip and it's one of my favorite 2019 memories! I developed a love for creating art and it helps me pass the time on difficult days. I have learned a lot more about the human body, mold and heavy metals, lyme and babesia, aromatherapy, the psyche, healing, and nutrition. That knowledge allows me to do what I love and help others on a deeper level through health coaching. I could let the evil part of my mind say 2019 was a waste and I didn't make progress in my health, career, or any measurable aspect of life. But I choose to let the sweet part of my mind focus on the goodness and it helps me persevere.
The only goals I have set for 2020 is to work on my own personal development and help others with theirs as much as I can. I will of course stay focused on figuring out how to heal my body and continue to take care of it with meditation, natural remedies, healthy food, and exercise (when I can). I started a Patreon site to share helpful content and created an online course for developing virtues with short daily reflection and journaling prompts. There will be some guided meditations coming soon as well. Patreon is a cool platform and I'm hoping to build a nice online community there and build content based on my followers interests and needs. I am going to pursue more types of art and creative outlets this year and that really makes me happy and excited. I don't really have any work related goals because I use my body for work and I can only do what it allows. Setting goals in this area of life is no longer possible as far as I can tell. I am looking for volunteers so I can continue growing the nonprofit, Blessed are the Flexible, to help me build the network of wellness practitioners that are willing to work with the chronically ill or disabled at a reduced rate. I would also like to start a YouTube channel but when you feel like poo, the last thing you want to do is film yourself for the world to see - I know I have knowledge and wisdom to help others so I am keeping it on my goal list even though it is a tricky one I can't seem to figure out yet. I realize the key to successful social media and blogging is being consistent and my health is constantly an obstacle but I am going to continue doing the best I can do and share when I can.
I think this is the first time I have not felt super duper optimistic about a new year ahead. I am curious if this medication will work and what the future holds for my physical body. After my Guillain Barre diagnosis, my neurologist told me it would take about four years to heal completely. In my mind I was thinking every year would get less painful and would only be getting better and better. Before I hit the two year mark I got lyme, ehrlichia, and babesia which totally ruined my four year plan of only improving. It's a little hard to not know when or if I am going to get better with no timeline. But despite my struggles, I am excited about creating more art, and building online courses and content that will help other people on their journey to wellness. I am still hopeful of what is possible this year and will always strive to be the best version of myself each and every day.
Most of you know that I am very careful about what I put into my body. I am not one to take medications and don't like using chemicals in my body so if you would like to learn more about why I am using Disulfiram, check out this post.