What a Difference Two Days (And One Doctor) Makes

I'm the first to admit my last post two days ago was a bit angry; or at the very least, full of frustration. One of my favorite quotes is "This too shall pass." It's not one of my favorites because it sounds pretty. I like it because it's undeniably, consistently true. Sometimes you have to wait longer than you'd like, but it does pass.

At the end of last week in physio, I felt like a pathetic specimen of physical potential. Even though today I am still in pain with lagging body strength, I was well balanced and able to finish all my exercises with semi-ease. I almost felt like I could carry a bowl full of goods on my head like I see some of the Indian women here do. Baby steps though.

Of course Dr. Ashish had left just the physio room minutes before I began all of my tricks. He will be incentive for me to be just as steady tomorrow. I talked to him about the new medication my doctor at home wanted me to start with the awakening of some new symptoms (that are actually old symptoms just revisiting). He was cool, calm and collected -- as always. Maybe on this earth, there are just some doctors that are like that. Or, maybe he gets me. I feel like he gets Lyme Disease, but more so the fact that there is so much more that no one can begin to figure out about it. Still, he doesn't dismiss details, or over invest in them either. He lets it be what it is for what it's worth. That helps him understand me better even though I know it would be a far easier task to abandon than attempt. He always listens. His eyes never roll or wander. He never looks like he’s going to give up, or throw up. After lots of time to get used to excuses abound from doctors, they still bother me. "I can’t help you because you are too young to be this complicated" (yeah, that’s a real one), "you look fine to me," and "you need to move on." “I don’t know” is just about the only thing I can hear from a doctor’s mouth without cringing. It’s real and honest and totally acceptable. I relate to "I don’t know," because frankly, 9 times out of 10, I don’t know all that well either and I’m living in this "complicated" body.

When I see Dr. Ashish, I feel temporarily less solitary in this big country. While being so far away from the few people I allow myself to think out loud to, he makes such a positive difference in my time here -- and even my balance by the looks of it on many days I see him.

He’s going to take the new medication my doctor suggested, and give it to Dr. Geeta Shroff to test with the stem cells. I love how she does this. She mixes the prescription with the stem cells to see if it’s safe. Under the microscope, she can tell if it’s injuring the baby stem cells before I put it into my body. Ingenious. Just before I came to India, I had to go off one of my medications. I felt so sick on it, and not the “it makes you feel like crap before it makes you better” kind of sick. The "I serioulsy feel like I'm dying" kind. It was a generally well tolerated medicine; one far less harsh than many others I've taken with no side effects at all. My doctor finally said he didn’t know why it was doing what it was, but didn’t want me taking it anymore. Sometimes he has to go on intuition, and he was right. When I got here, Dr. Geeta Shroff tested it with my blood and said it was killing all of my own cells, along with all of the new stem cells she mixed in.

I’ll wait to see what the results are from the experiment with the new medication, and go from there. In the process of getting well, it is said that people go backwards, often re-living their symptoms in the opposite chronological order they appeared. So, the first symptoms to come will be the last I’ll see go after I endure them again. Part of me wants to wait these new symptoms out -- maybe the healing is what hurts so bad. The last time I had this was in October. Are the tendon pains and sore soles of my feet coming back temporarily only to go away forever? Or, is this a direct effect of the bacteria that has nothing to do with the healing backwards concept? If it’s not the wellness process, leaving the bacteria to destroy more is not worth a whole lot of waiting to me. I have baby stem cells to protect and like any good mama, I am not going to let anything jeopardize their health. Especially this.

Exhaustion has plagued me lately -- a different kind than I’ve experienced before because now, all of me is actually tired. It used to be that only my limbs would be tired and weak, but I was ready to go out, if only the rest of me would comply. Finally, everything seems in agreement. I didn’t get out of bed until 10:30 this morning and was nodding off in between thoughts of "Is it really this late?" and "Could I legitimately be this sleepy?" When I told Dr. Ashish, he gave me the best prescription ever -- to sleep as much as I can. That’s when the stem cells grow and work. Can you imagine, a guilt-free order to be lazy? I’ve already been cleared to eat as much as my baby stem cells desire (and that’s a lot). Mix that with the ingredient of lounging around and I don’t think there is a recipe I’ve ever been more willing to follow.

This afternoon was my extra big dose of IV stem cells. I get it every two weeks but something about today, made me feel like they were going to work better than usual. I can't explain the feeling but it was definitely there as I watched the drip drop of the bottle. Maybe it was the Bryan Adams music blasting in my morning physio session that I’ve become uncomfortably fond of. Or, the extra time I cuddled in bed. Or, the exercises Chavi had me do that gave my body a renewed sense of confidence.

My instinct is almost always right. Two-and-a-half hours after my stem cell infusion, my body was flooded with just about every symptom I've ever had -- all at once. I always forget by the time these infusions roll around again, that this happens. Although it was so much more intense this time than maybe ever before. It's probably better I get caught off guard. Body aches engulfed every inch of me, my skin was so sensitive that I felt I had rug burn everywhere, my neck had intense stabbing pain and didn't want to hold up my pounding head, my original neuropathy pain from 2005 shot and stabbed at my lower body, I was so cold that I turned the heater to high and got under two blankets but still shivered uncontrollably....and I'll spare you the rest. Years ago, when I went through nine months of IV immune globulin (which is used to balance and strengthen the immune system), the same thing used to happen after each infusion. That's how my nuerologist knew it was working. My immune system was fighting, my nerves were being stimulated into repair mode, and my body was being reactive (for once). I felt slightly desperate (and crazy) today as I talked out loud to my baby stem cells. "If you just settle down, I'll try to get my hands on some ice cream later. Okay, okay, how about chocolate?" Nothing worked.

Finally, with the help of some pain medication, I fell asleep for almost two hours. When I woke up, everything had mellowed but it's still, as I type this at 7 p.m., hanging around with enough force that all I want is to go back to bed. Tomorrow is another IV infusion (I always get it for two days in a row). I think I worried the nurse on my floor. I asked her to take my temperature and she stared at me with a silent, "Wow, you must really feel like crap." I never ask for extra medical monitoring. Actually, maybe the look on her face was horror from having to stand in my heated to 98 degree room while I talked through my chattering lips. Either way, I'm ready for tomorrow. There is nothing like having a body that used to just feel hopeless and half-dead, work so hard (and possibly even extra hard because my symptoms are exxagerated lately). If pain is gain, bring it on baby stem cells! Maybe we'll have ice cream and chocolate anyway.

Thanks Dr. Ashish for understanding me, and making me smile on the days it doesn’t come easy. My Jewish mother, in her hesitant absence, thanks you too.

How blessed I am to have amazing doctors (on different sides of the world) who sometimes say “I don’t know,” but never mean “I don’t care.” I only wish I could share them with all the people who aren’t as lucky.

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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