On helpful people, hurtful people & more strange happenings

Brown dog, red thumb

A while back, I graduated from occupational therapy, which was for my hands and wrists, but now I have gone to physical therapy, which is for my neck and shoulder. Because there always has to be something.

Although both are at Cooley Dickinson Rehabilitation Services in Northampton, they are two different departments. The PT for my neck is because of lingering restriction in motion and pain after the car accident, and the shoulder pain was there before but has become exasperated. I was chatting with the PT and told him a tree fell on my house, and he said he knew, because it was in the notes. He seemed to maybe think this was as curious as I did, because it didn’t affect my symptoms, although it did mess with my head. I guess Melissa put it in there for background, just so the PT would know he might be dealing with a doubly traumatized person. (Car accident and tree fall.)

A friend from the old days came over yesterday to help me get the books and the bookshelf out of my room. We had tea and ruggelach. It was nice to catch up. My room is almost emptied out, as is the part of the kitchen that needs repair (the whole area where the table is).

A few more strange things happened, and I am going to put these under the category of people behaving badly. Hopefully my run of it is finished, but as I know from experience, you never know what else will happen.

1. A guy who I hardly know blew up in my face when I said something he didn’t like. He spewed obscenities, getting in my personal space the same way that DT did with Hillary Clinton in that horrible debate. I said not to curse at me, and he cursed some more. I have a thin skin, literally and figuratively.  I wished I had reacted the way I know some of my friends would have done. They would have gotten back in his face. Or maybe calmly walked away. I instead burst into tears and THEN walked away. (Little PTSD going on here.) He shouted after me that I was a prima donna. Sorry if this sounds a little vague due to missing details, but I’m doing it this way for a reason.

2.  In a group email about skin cancer, I wrote that doctors have told me that my squamous cell skin cancers are annoyances that are very unlikely to be fatal.  That was annoyance with a capital A, as I wrote in this post about skin cancer as a chronic disease. Someone wrote that there’s no difference between "the deadly kind" and "the annoying kind on the skin." She said it because she had lost a relative after a misdiagnosis. So it seemed to me that she was invalidating what I said, or suggesting that my doctor had it wrong...and that because her relative's was deadly, mine had to be also. I hate to use such a trendy word as triggered, but, well, I was triggered. I wrote her back, saying so. People can say things behind email, text and Twitter in a way they would not to your face. We exchanged a couple more emails. The last one that I wrote, I didn't send, thinking I would regret it.

I added the photo of the dog because 1) It's a cute one of her eating one of her Christmas cookies, and 2) the red on my hand is from treating pre-cancers with a chemotherapy cream, Efudex.

3. The low tire pressure light went on in my Subaru. This was an annoyance in my old Subaru. It would go on for no reason. But just to be sure, I went to Steve Lewis Subaru. It is closer to me than Bertera Subaru. It was a Saturday. The guy at the desk said it was probably the cold but he said if I waited three hours someone could check it. Oh and also, it would be $14.99. I said, seriously? He said they had to pay the technician. My local service center, Veryl's, has done it before for free. But they weren't open. So I drove around not thinking much about it. On Monday I went to Bertera Subaru. They checked it for free. The tire pressure in the front passenger side was 16 pounds. It is supposed to be 32. The technician checked and found a nail in it. I went down the road to Town Fair Tire and got it patched. I happen to have bought my car at Bertera, but still, should that make a difference in a dealer having the courtesy to check my tire pressure?

In summary it's a good thing I didn't have to add a car accident to my list of woes.

Running around running two businesses

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Sometimes it feels like I have two jobs, the business of running my medical care and of running my so-called freelance writing business. An example of this is how the other day played out, when I wanted to write but couldn't fit it in.

I am concerned that a spot on my wrist could be skin cancer. As per a nurse’s instructions, I sent a photo of it to one of my dermatologists, Dr. Liu, on Patient Gateway, the Partners portal, but the photo is useless because it rejects the larger size and when you make it smaller, it is pixilated and therefore of no use.

Dr. Liu said she would look at it when I see her at the end of July. I called her scheduler to see if there were any earlier openings and she said there was a rare occurrence! An opening with Dr. Lin at 11:15 yesterday at 221 Longwood in Boston.

This led to a domino effect of canceling the occupational therapy appointment I had for 2 p.m. I will have to do my hand exercises because she measures my progress on opening up my hand more, specifically my left one which was starting to look like a claw, due to tightening of the fascia resulting from graft vs. host of the skin. The ECP is helping in other areas by loosening up my skin but not in my hands.

Then on to calling in prescriptions. I just call the pharmacy and speak to the recorded creepy voice except for one doctor who says the automated refill requests go to another office so I have to call to make sure she gets it.

Next it was time for visual field testing at the ophthalmologist’s. This is nerve-wracking. You have to push a button every time you see a flashing light. They are testing for possible glaucoma and loss of peripheral vision. My mother had it so I’m at risk. I did it last year and was OK. The technicians were cranky. I was tired.

“OPEN YOUR EYES WIDER!” they said. “DON’T LOOK TO THE SIDE, JUST FOCUS ON THE DOT.” They did the right eye twice because the machine wasn’t working the first time. By the time they got to the left eye I was so tired that I wasn’t catching the dots.

I’m afraid that when I see the doctor, she’s going to tell me that I failed on the left side.

I tried to change today’s ECP so I would not have to go twice in one week. I didn’t get a return call or email. I’m going back for the procedure today.

I’m having trouble getting Maddie into the car and might have to get a dog ramp.

I took an extra gabapentin because I take less than the therapeutic amount, due to the side effects. Nobody wants to take more but I wanted to see if it helps the neuropathy because the CBD isn’t doing it. I’ve heard I could take more CBD, but nobody knows. Before tennis on Monday, I took an extra gabapentin and had one gummy that is 1 to 1, CBD to THC. It is just a tiny bit of THC but it was bad for my tennis. My arm was wobbly and I wasn’t making my usual net shots. I think I should stick to THC at night. In any case, either I warmed up or the THC wore off, because by the third rotation I was doing fine.

I guess I could have skipped tennis to get some writing done, but as exercise is part of my health care routine, I wasn’t going to do it. In summary I seemed to spend most of the day planning and scheduling and rescheduling appointments, and not any time writing. It is necessary but not satisfying. All I can say is we transplant recipients sure need a lot of maintenance and sometimes it’s hard to get other things done, in general.