Note: link to fundraiser is at the bottom of this post.
Hello, friends! It’s been a while since I’ve posted an update. This past winter and these few months into 2017 have been tremendously difficult for me. I’ve been able to do very little. My health has been on the decline and I have new symptoms popping up, which is never a positive sign. I have had to stop designing for Bellis Bohtique and just focus on my health and what my body is trying to say. I believe our intuition can tell us what we need in the moment if we can tune out the world and all of its distractions and truly listen.
Honing your intuitive skills takes time and practice if you feel like you don’t know what your body is “saying” to you. I listen to my body’s response as I eat, drink, go about my day and do my activities. Because of my eighteen-year struggle with Lyme I have become quite adept at hearing that little voice. Often it’s just a feeling, but I know the feeling well and respect it because I know that human intuition is something that goes back to the very first humans and how they relied on their experiences and instincts to guide them and it helps me too!
The past six-ish months have just been so hard for me, with new lows and new issues. Lately, my chest has been hurting, often becoming very painful and restricting my breathing and for a few weeks, I had a fever, night sweats and chills as well. I went to a walk-in clinic a few weeks ago and after two hours of waiting, and crying in the waiting room because I was so sick and hurting so much I was finally seen but quickly told to go straight to the ER. So there we went for another few hours, getting a full workup including x-rays, an EKG, pulse and heart monitor, blood pressure cuff and an IV in my arm. They also gave me a GI cocktail (insert sarcastic “yum”) to rule out my esophagus/ulcer/Gastritis issues. I had wires all over the place and wasn’t quite sure what all was going on, but thankfully I was restful. In the past, ER visits have caused a lot of emotional trauma.
I had a feeling everything was going to come back perfectly normal, as always, and I cried when it did. It is SO hard to diagnose Lyme patients, no matter what it is. The doctor said he collaborated with some other doctors since I was “a complicated case” and they thought, because of my history with Lyme that it could possibly be some sort of inflammation around my heart due to Lyme or a virus, such as Pericarditis, since all of the tests came back normal and my vitals were normal. So he gave me Celebrex (a mild anti-inflammatory and gentle on the stomach) to take down the inflammation without irritating my Gastritis. I researched Pericarditis and though I read that it was rare, I read nothing of it being fatal. Apparently, Pericarditis is very serious and can turn bad quickly (so my doctor told me when I saw him later). So I took the medication for a few days, as long as my Gastritis would allow me, then I would skip a couple days and take it again, and I did feel some relief. I was also taking a mild antibiotic at the same time in case I had the beginning of pneumonia (my dad had it) which I have to take very seriously. I tried to cover all ground.
Not long after my ER visit, I collapsed after I showered. I was so exhausted. I sat up in bed, I laid down, but I could not catch my breath and every once in a while something would happen and I’d literally gasp for air. You could hear my throat tighten as I struggled to pull in breath after breath, and then it would release. It was frightening and I was so weak that I could hardly speak. I remember mom next to me and my hand clinging tightly to hers, afraid I was fading away. I’ve never felt so close to death than I did that night, in those few hours. The constrictions happened again and again and mom decided to call 911. Two paramedics and two firefighters came into my bedroom and they sat me up to monitor my heart and blood pressure. It was all I could do to sit unsupported on the side of my bed as they examined me because of how weak I was. Oddly enough, all my vitals were normal. It is so strange that a body can go through all of that, yet not have anything off! I was having palpitations and was still struggling after they left, but chose not to go to the ER again and just treat myself, in my parents’ care, at home. It was a rough night but I made it through. Sometimes, in those moments when you have no control and you feel fear pressing in on you, you just have to have faith in the moment and surrender.
“Have faith in the moment and surrender.”
A vlogger I follow on YouTube and is so inspiring to me said those words after she gave birth naturally and with no medication or epidural. I thought it was such good advice, and not only that, but words to live by. You just have to trust that a higher being is in control and release the power, allowing yourself to just accept what is, and trust. Simply trust. It’s hard to do when you are in that moment and feel so helpless and afraid, but that is what will bring peace in an otherwise chaotic moment to your body and mind. Again, listening to my intuition and just resting when I want to scream or cry in frustration is helpful for me in dealing with these crazy moments that have become my life.
A few weeks after my chest pain began, I saw my MD who immediately sent me for a CT scan, concerned that the hospital didn’t do one. That was a very, very long day. Again, strangely enough, the test came back normal with no signs of Pericarditis or damage to my heart. I was grateful and relieved but also frustrated that we still do not know what is causing this pain. It’s still there, but some days are better than others. My fever is mostly gone as well as the other symptoms but to be on the safe side since I am still having discomfort, I have an appointment with a cardiologist this Wednesday and the next week over I see my ND for the first time in two years. I’m hopeful that he will be able to help me and provide some answers. And then start me on treatment. It’s been a few years so I’m anxious to hear what he will suggest. Treatment always means you get a whole lot sicker feeling before you get better and it’s a hard pill to swallow but I’m ready. I NEED this.
Because of the recent and sharp decline in my health, we are doing all we can to stabilize what is left of my health and strengthen my weakened immune system while plotting to beat this disease! I have started a fundraiser with YouCaring.com to help with the costs of the treatments that are upcoming. I’ve never done this before but there comes a time when I need to be humble and show you who I really am, what is going on and ask for help when I need it. And the truth is: I won’t be able to receive the treatment I need without financial help.
Each of my ND appointments is very costly both for the appointment and the treatments. And insurance does not cover Lyme treatment as of yet. This is a struggle for many lymies who are so, so sick and they are told their insurance does not cover the treatment of their disease. It’s crushing. I’ve cried in the doctor’s office before knowing we couldn’t afford the treatment I needed. Imagine there being something that can help, even a little, and it’s just out of reach. It is devastating.
I am chair/bedbound and only able to stand and sit unsupported for short periods of time. It’s rare if I am able to do any work around the house besides minor cleaning up after myself, and even now, I have to have help with showering and so much more. I rarely leave the house, and if I do, it’s most likely an appointment with my doctor or to get a blood test or scan etc., and not for leisure.
If you can, please help in any way possible, even if you just share my fundraiser page. All you have to do is click on this link and then click the blue ‘share on Facebook’ button on the page, or share on Twitter, etc. Every share can raise $37 and I’ve seen it happen! Every donation goes directly to me and will be used solely for the purpose of my Lyme treatment. I am ready for this eighteen-year battle to be over. My body doesn’t have much fight left. And I am grateful from the bottom of my heart to anyone who can help me get the proper treatment to fight a little longer. The compassion and generosity, even from people who don’t even know me personally, has truly blown me away.
I will post an update on my fundraiser page sometime after my cardiologist appointment and again after I see my ND to keep everyone informed. Thank you, thank you for your love and support!