Feet can do the darndest things

I was thinking while walking past a bush in bloom this morning that the best way to keep sane in the face of COVID-19 is to keep from looking too far into the future in much the same way that I tried to frame my outlook during leukemia treatment.

You have to pull your gaze back from the uncertain future to keep from  keep getting overwhelmed. Or at least that's what I tried to do. In the hospital I remember saying to a doctor, or maybe it was a nurse, that I was trying to take it one day at a time. I remember the person saying to even take it one breath at a time. I don't know about that, but I do know that if I get carried away with the what-ifs, I try to pull myself back in.

I've also been thinking about my feet, the good and the bad.

They have been serving me well, carrying me around town on longer runs. I heard somewhere that it's good for the brain to vary your route, so I've been changing it up a little. To get a break from the intensity of MSNBC, I've been watching a little bit of The Today Show, which usually has at least a few bright spots. The other day they were talking about even changing up little things, such as using the opposite hand to brush your hair or your teeth.

I don't think my feet can take it running every day. But I'm glad that while playing so much tennis in The Before Times I at least tried to run once a week so I wouldn't lose it in case I wanted to do more. Now, with no tennis, running beckoned. It's not as easy as when I used to go out without even thinking about it. I have to push myself out. But once I get going, I'm glad for it. The most I've gone is six miles, but it's not any less than what I used to do. I am of course slower. Five to six miles is enough for me to get those wonderful endorphins. With a dog walk in the morning and near the end of the day, I've gotten up to seven or almost nine miles on some days.

Can you tell which are the new ones?

The problem with my feet is, 1) I felt a twinge in my heel and realized I better take care to do the things I know I need to do to keep plantar fasciitis at bay. These include stretching, rolling my foot on a bottle or ball, and, something that's hard for me to do, getting my knuckles into my calves to try to get them to be less tight. (I needed the chiropractor for that.) I have some roller things somewhere in the back of a closet, where they are not too useful.

I realized that I hadn't gotten new running shoes in a long time, so I went online and found the same model and brand. Of course the ones on the market were the next model up. You hear people saying to buy two pairs of the same shoe if you like them. I don't have the foresight. I looked around and found what I wanted, Brooks Cascadia 13. They are a trail running shoe but good for me because they are very neutral and work well with my orthotics. The ones widely available on the market are up model (14) but since I couldn't try them on I wanted to stick with what I had. I found them at Skirack, a little store in Burlington, Vt.

 As for problem number two, it's the unpredictability of the neuropathy in my feet. One day last week (I think it was before a storm) it got so painful that I could have cried. It gets to the point of feeling like you are walking, or running, on shards of glass, or that an electric current is going through your feet. I have CBD cream and drops that might help a little. I gave up on the THC and the TCH/CBD combo because I didn't like what even a small amount did to my head. A friend said I could be a weather predictor, because it seems to be related. Then they calm down and it diminishes to a low-grade buzzing feeling. On some days they are numb. I guess that isn't bad for running, because it's an extra layer of cushioning.

I asked the neurologist in Boston about trying a little more gabapentin at night. I don't take a very high dose. He said to go ahead and try adding an extra 300 milligrams at night. I asked him to change the prescription so I wouldn't run out. He changed it without adding a dose. In other words, he took one away in the morning and added it to the evening. He seems to have disappeared. I called his office three times, and Melissa sent him an email, because he was going to give me a referral to somebody I need for an intestinal problem that he said could be related to my neuropathy.

As I wrote in this post about dermatology, it is very hard to find a doctor for a non COVID-19 problem. At least it is not life-threatening, and so I am trying to keep that in perspective.

Please let me tell you about my feet

From Our Neuropathy Friends Facebook page

First of all, I'll say straight out that nobody wants to hear about your feet (or mine) unless they suffer from the same condition.

For example, if someone asks how you are, and you say, "My feet are killing me!" you're probably not going to get a good response if their feet are fine. If you say that your plantar fasciitis is acting up, and they've had the same infuriating ailment, you could probably talk for a long time. Similarly, if you say your neuropathy is driving you crazy and you're talking to a fellow sufferer, you'll be good to go. If not it is just not going to sound that interesting, or that believable for that matter, to try to explain to someone that your feet can be numb and painful at the same time, that you feel like you're walking on rough sand, or on little nails, or that your feet have an electric current in them. Or that, tantalizingly, it will get better but then it will sneak up on you again. 

The 4,325 members of the Facebook group Our Neuropathy Friends know what it's all about. I don't post much, but I did the other day, and I got some helpful advice, and support, which is also important. Of course the remedies are all over the place because each person's experience is individual. Some have found relief from CBD. I've also checked in to a group called CBD Oil Users, with 161,860 members. 

I take1,500 milligrams of gabapentin (Neurontin) daily. It takes the edge off, but the results are not great, because there always is, at minimum, a buzz. I get acupuncture and have been using some CBD. (Short for Cannabidiol, CBD is the non-psychoactive component of the cannabis plant, not the part that gets you high, tetrahydrocannabinol (THC). 

Sometimes I think it's helping, other times, I think not. I'm encouraged, though, because studies have shown that cannabinoids can alleviate neuropathic pain. I recently met some people who are happy with its benefits for themselves and for their dogs. In case you haven't noticed, you can get CBD all over the place, even in the mall. Where I'm getting it, and how I'm using it, is material for another post.

With the latest flareups, I decided it was time to check in Dr. Ugonma  Chukwueke, (pronounced Chew-kwe-kee) the Dana-Farber neurologist I saw a couple of years ago. I left a message and was supposed to get a call back but didn't. Melissa nudged. I got a call back from a scheduler who said Dr. Chukwueke is not the person for me. Neuropathy like mine, resulting from chemotherapy, is not her expertise. She specializes in neuro-oncology, or neurologic complications of cancer, for people who have cancer, not people who have chronic conditions resulting from treatment. I wondered then, why I got sent to her in the first place. (Picture eye roll.)

In any case, I now have an appointment for next Friday. It's at 9:30 a.m., which is not so great. But the doctor, David Pilgrim, sounds great. He has excellent patient reviews and the impressive title of chief, clinical neurology, Brigham and Women's Faulkner Hospital, and instructor, Harvard Medical School.

 In addition to discussing alternative treatments, I'll bring up the possibility of switching to Lyrica (pregabalin.) As I wrote in this story, both gapabentin and pregabalin have side effects. I don't think I'm taking the highest dose of gabapentin, but I've been afraid to take too much more, for the reasons the patients discuss in the story.