The Distorted Looking Glass

Sometimes, I feel like the picture of my health best resembles a clouded fish bowl. I can sort of make out what’s going on inside, but so much is hidden behind all the chaos, that it's hard to judge what is really happening.

I keep getting the same questions from prospective patients and loved ones hoping embryonic stem cells might spell relief for their terminally ill or incurable family members. Is it helping? How much am I improving (in percentage)? When will I know for sure if it worked? Ahhh, if only these questions had one liner answers.

I feel totally alone in this, because in all honesty, I am. My situation is a complex one, which I don’t even dare to give the attention to by explaining in its entirety.

I wake up a few days ago with severely sore soles as if I’m walking on push pins with bare feet. In addition, I have stabbing pain and pulling in my tendons that makes me actually look to confirm nothing is ripping inside my legs and hips (oh yeah, and one hand). I immediately know what is causing this, but try to ignore it due to the sheer inconvenience and battle that will come. After a few days, I talk to my doctor at home who confirms my thoughts are probably accurate. One of the co-infections I have (Bartonella) from the tick that gave me Lyme Disease causes these specific symptoms along with some others equally as challenging. Being on high dose IV antibiotics like I am to combat the Lyme, can often kick up the other tick-borne infections either active or dormant in the body. I haven’t had these problems since October, but here they are again.

This means a change of medications to try to cover all the bases, all while trying to explain to the doctor here why it’s necessary -- a task in which I find myself avoiding because of its difficulty. It’s hard to help some people understand this whole thing. Being an advocate for yourself doesn’t stop when you cross country lines. In fact, doubling up in armor is wise. In a place where they are trying to make me better, having to add medication and new symptoms arising doesn’t seem to sit well. Patients here don't seem to go up and down. But, stem cells or not, it’s life with Lyme (for now). And it's my mission to educate whether it's a pretty picture or not. I’m seeing amazing things here; people regaining function they haven’t had in years since an injury, autoimmune disease literally reversing, and the list goes on. Still, no one else I’ve met seems to struggle with the confusion of a disease that doesn’t originate within the body, changes constantly with no sure guideline as to what’s happening, or what to do.

These people don’t have extra variables like several types of bacteria all requiring different treatment; the confusion of medications that you can’t live with but can’t live without; and the ‘going it alone’ factor. In autoimmune or degenerative diseases, the new stem cells are repairing healthy function of the cells so they do not attack their bodies any longer, or at such a rapid pace. Stem cells will not cure the Lyme Disease. There is nothing than seems to kill this bacteria other than antibiotics. The only thing stem cells can do is help boost my immune system to better deal with it, and aide regeneration of my tissue, nerves and cells that have been damaged as a result. I still need my antibiotics to play a part in this by keeping the bacteria repressed so the disease doesn’t progress, and the new stem cells aren’t affected.

So, back to the question. Are the stem cells helping? I am positive they are. I have a knowing about it. Some things are getting better with no other explanation, albeit the fact that there are many new things getting stirred up, and old things that are still unsettled. If I take away the problematic co-infections, the side effects of the antibiotics that are the lesser of two evils (choices are that or the actual disease), and the sheer exhaustion of trying to balance my life and health in an unfamiliar country (or, who knows, maybe it’s all the antibiotics making me tired) -- I say, “Yes, it's helping.”

I am immersed in eastern culture where it is believed karma plays a part in everything, the mind is undoubtedly the root of illness and if you want something bad enough, you can have it (or if you don’t want something, you can wish it away). And to be fair, I believe it and embrace it to an extent beyond what I think so many would even consider. The connection between mind and the physical body is real. But, after six weeks in this spirited place, I will bluntly say…..it is not the dust, the food or the sight of poverty that eats away at me. It is getting used to a world in which I am the outsider and the majority seems to think they know what’s best for me more than I do for myself. With the exception of a few beautiful souls here that have so graciously shared their own spiritual journey with me, and a couple of amazing doctors, it has been a struggle to stay grounded with all the pushing and pulling. It is in the unique melting pot of America that I never realized affords the absolute luxury of doing things any which way you like, if even it works only for you.

It’s probably been the one thing I haven’t coped with well at all in the whole course of this illness; the judgment of those that haven’t walked or limped even an hour in my shoes. I'm sure they’d immediately want theirs back.

Ghandi said, “Strength does not come from physical capacity. It comes from an indomitable will.”

To all the people in this lovely country who have well meaning ideas of how I could be doing a better job than I am struggling with a near impossible illness while still managing to live this incredibly fulfilled and happy life, I’d like to say: Leave my sore feet, painful joints and weaker-than-you’d-like muscles alone. I’m fine with it. My body is healing at its own pace; one I’m undeniably proud of. Now, can you please get the heck out of my way? I have places to go and you are totally raining on my parade.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog