If you Google “limbo,” the synonyms provided include: in abeyance, unattended to, unfinished; suspended, deferred, postponed, put off, pending, on ice, in cold storage; unresolved, undetermined, up in the air, uncertain; (informal) on the back burner, on hold, treading water, in the balance—every one of which I could have used to describe my health situation since the last time I published a blog post, six months ago.
Many times through the course of my treatment with Dr. Richard Horowitz I was tempted to share my status, but the instances that called me to write were moments of despair or frustration. With the intent of not rashly blurting out my feelings, I remained resolved to refrain from putting forth such negative sentiments until I was “out of the rough.” This restraint was particularly important, as I was told time and time again that I was just “Herxing” (a Jarisch-Herxheimer Reaction is a reaction to endotoxin-like products released by the death of harmful microorganisms within the body during antibiotic treatment). So, I put my head in the sand and waited out the storm in silence. I continued going about my everyday business as best I could, as we all held our breath waiting for the symptoms to subside and the fog to clear. I not only didn’t want to give premature judgments about the protocols without having given them sufficient time to work, but I also recognized how unhelpful it would have been to spew off more bad news, when I knew how much negativity already bombards our newsfeed. Ultimately, however, after six months of rotating through intensive multi-antibiotic regimens, the fog didn’t clear, and I decided to cease treatment for chronic Lyme disease. The ever compiling and compounding side effects became impossible to justify in the face of no perceivable improvement.
Due to compromised gastrointestinal absorption and drug sensitivities, which precluded usage of the most promising protocols, I was forced to receive the antibiotics intravenously. This type of daily administration required a PICC line, which became infected due to an adhesive allergy that led to uncontrollable dermatitis. With mounting scar tissue formation in my antecubital veins of my “elbow crease” (the “go-to” for blood draws) we made a difficult decision to have a central port placed beneath the skin of my right chest wall in order to allow for easier access. On the day of the procedure to implant the device, it took five nurses and eight needle sticks to get venous access in order to be able to administer the anesthesia. I took that as a thumbs up from a higher power—satisfying confirmation that I was making the right call to go through with the surgery.
I acknowledge that the ideal notion of a “normal” college experience is a farce and I should be thankful to be able to attend school at all, but I was admittedly desperate for a senior year that more closely resembled the lifestyles of my friends and classmates. As such, I spent the second half of the summer getting 2-4 hour infusions 3 days a week in the hopes that the supportive modalities would grant me a more stable state of health that could sustain high functioning in the fall semester. Despite our best efforts, that is not what I got. Instead, I was graced with a period of more pain than ever. Hence, my reason for citing limbo.
Limbo is defined as an uncertain period of awaiting a decision or resolution; an intermediate state or condition; a state of neglect or oblivion. I’ve been living in limbo. It is akin to the state of our country right now, as we feel as if we can do nothing but laugh, mourn, gawk, and throw up our hands at the presidential election. How did we get here? Why did this happen? Where did we go wrong? What the heck do we do now?
I ask myself those questions every day. All the while, I do my best to fill up the space with:
smiles, Paddy helps with that,
laughter, Maggie helps with that,
light-heartedness, Teddy helps with that,
love, Mommy helps with that, and
strength, Daddy helps with that.
The lyrics ring true: “I get by with a little help from my friends.”
However, despite all this incredible support, the lack of resolution to my illness is nothing short of gut-wrenching. Deciding what to do next is only slightly less daunting than the prospect of living with the pain forever. I have been haunted by chronic pain for nearly six years at this point and we have finally decided, after pursuing countless, more conservative efforts, to try a relatively novel and less-well understood approach to treating chronic pain. Starting on the Monday of fall break, October 17th, I will be admitted to Hahnemann/Drexel University hospital, where I will be sedated for five days using IV Ketamine.
The proposed, general mechanism for how this treatment works is to give the nervous system, specifically the NMDA receptors, a chance to “reset”. We are hopeful that I will awake from the sedation free of pain and far less symptomatic. The effects of IV Ketamine protocols have been documented to last upwards of 6 months. The possibility of living pain-free for 6 months feels like a dream after 6 years of intractable pain. I would be grateful for the reprieve on behalf of my parents and siblings who most often receive the call of nothing but sobs on the other end of the phone when my nerves are on fire. I would welcome wholeheartedly the chance to be carefree. I would beam in bliss and thankfulness if I could spend a night dancing in a dress that didn’t drape to the floor, with the faith that my knees wouldn’t swell and turn tomato red. It would be a tremendous luxury to have conversations with people and be able to listen to what they are saying without having the aching of my bones drowning out the sound of their voice. I am clinging to hope and trying to rest in the faith of this glorious outcome.
In appreciation for the doctor who is orchestrating this hopeful endeavor, I have created an online fundraiser that will span over my five days of treatment. My neurologist, Dr. Heiman-Patterson, has gone above and beyond for me, as she does for all of her patients. By nature, she is a phenomenal physician, caring first and foremost for the wellbeing of the sick people who come to her for answers and relief. I would like to play a small part in helping her help and her patients the way she does and advancing the efforts she dreams of achieving, specifically in her ALS Clinic. “High-five for Heiman-Patterson” is my small token of thanks to her. Please spread the word and join me in raising as much as possible for the ALS Hope Clinic during the five days I am sedated by following this link: https://razo.io/Zu9EBA.
Thank you in advance for your thoughts, prayers, support, and donations!