My bounce ended shortly after I posted the last time. And though I knew it would, it felt like a terrible disappointment. The pain came back, the swelling came back. About two days after I suspected the end was upon me, I had a terrible choking episode, the likes of which I had avoided for several months. I have swelling in my esophagus and weakened muscles in my throat, which makes choking a potential problem all of the time. But like anything else, you can learn to compensate for these kind of conditions. Before I went to Mayo, and for several months afterwards, every meal was a potential danger. But it hardly ever happens these days. So, when I choked so hard that I was pounding the table with a purple face, and my son had the phone in hand to call 911, I knew for sure that the bounce had rolled away.
It was hard to stay cheery when it was over. Living with unrelenting pain again, seeing the rash come back, hearing the gravel return to my voice, having a mouth full of sores again, limping around and so weak I got winded going up the stairs - it felt like a heavier burden than ever. I tried to remember that the bounce was a good indicator that the hookworms are going to work in the long term. My friends and family reminded me too. But it probably took two more weeks before I was restored to my regular good humor.
But nothing is permanent, and that's the good news. In the last 10 days, I've started to see some real improvements. We had a week of vacation, and I was able to keep with almost daily hikes if I napped every day. It was sunny, and with frequent applications of sunscreen and protective clothing, I didn't get sick from it. I haven't had a new mouth ulcer erupt in more than week, after months of continuously having at least two at all times. I think I'm having less pain overall, but it's a little hard to tell since the pain always fluctuates from day to day. I didn't sleep well on vacation, so I'm fatigued. I don't how much fatigue is from the disease and how much is sleep interference. Now that we're home, that should become clearer.
At not quite eight weeks since inoculation, it seems too early to be seeing much real improvement (though a slim few people start to see result around seven weeks, most don't have any clear cut results for at least 12, and many are much longer than that). So maybe my last flare is just settling down. Or maybe it's the hookworms. It's all a little murky. What I know for sure is that I'm happy to feeling even a little better.
It was hard to stay cheery when it was over. Living with unrelenting pain again, seeing the rash come back, hearing the gravel return to my voice, having a mouth full of sores again, limping around and so weak I got winded going up the stairs - it felt like a heavier burden than ever. I tried to remember that the bounce was a good indicator that the hookworms are going to work in the long term. My friends and family reminded me too. But it probably took two more weeks before I was restored to my regular good humor.
But nothing is permanent, and that's the good news. In the last 10 days, I've started to see some real improvements. We had a week of vacation, and I was able to keep with almost daily hikes if I napped every day. It was sunny, and with frequent applications of sunscreen and protective clothing, I didn't get sick from it. I haven't had a new mouth ulcer erupt in more than week, after months of continuously having at least two at all times. I think I'm having less pain overall, but it's a little hard to tell since the pain always fluctuates from day to day. I didn't sleep well on vacation, so I'm fatigued. I don't how much fatigue is from the disease and how much is sleep interference. Now that we're home, that should become clearer.
At not quite eight weeks since inoculation, it seems too early to be seeing much real improvement (though a slim few people start to see result around seven weeks, most don't have any clear cut results for at least 12, and many are much longer than that). So maybe my last flare is just settling down. Or maybe it's the hookworms. It's all a little murky. What I know for sure is that I'm happy to feeling even a little better.