And the beat goes on

You know how when you are recovering from being sick, there is that day when you feel pretty good. So you decide to use that energy to catch up on things. And then it all backfires because you have exhausted yourself and now feel worse? Well, that is my life.

David observed that I have a habit of using up my spoons as soon as I get them. This keeps me in a constant deficit. He is absolutely correct in his observation, but it is a hard habit to break. My challenge is that given the nature of gastroparesis, I never know when I am going to feel well again, so I feel like I have to grab those moments when I can.

Case in point, I started PT for my shoulder last week. The exercises I have are not particularly strenuous. When the PT asked where I felt the pain when he had me move my arm around, I told him my shoulder and my stomach. I could see that he was confused, so I once again reminded him that my stomach is the most sensitive and vulnerable part of my body and that I feel discomfort there whenever my body gets stressed. He remained bewildered and moved on.

After he left, I iced my shoulder and didn’t think much more about it. That is until I woke up crying in nausea and pain later that night. Clearly I had overdone it, but how am I supposed to know what I can do with such a delayed reaction?

My physical therapist is very young (early to mid-twenties) and has clearly never worked with anyone with a chronic illness before. He seems very surprised that I have been able to tolerate the kind of shoulder pain I have for this long. I tried explaining to him that my baseline is pain and nausea and they are always with me. I have simply learned to tune out the constant nausea and that process has also allowed me to tolerate a bad shoulder for as long as I have.

Tuning out constant nausea does not come free and is part of the reason that I continue to have so little energy despite my stable nutrition. And my nausea has been particularly bad these past couple of weeks. I continue to struggle to keep my hydration where it should be because drinking is such a miserable experience. I did recently learn that ice cream counts towards hydration, so I can incorporate it into my routine along with jello and juice cubes.

On Friday, I added a scopolamine patch to my existent nausea management cocktail of ginger, zofran and medical cannabis. I think it is helping, but only time will tell how much it is helping. It wasn’t enough when I did a scaled down set of shoulder exercises on Saturday. I scaled my exercises down again today and hope this is where I am going to be able to build from.

In other news, my supplier continues to send me bad pumps. Number 6 is theoretically enroute to me now. The primary issue with all of the pumps is that they have all exceeded the manufacturers functional life by a fair amount. A brand new pump should last 5 years with daily use. The pumps I have been getting have been in service for up to 8 years.

My complex care coordinator called my supplier to try to get them to send me a new pump. Apparently, they do not have a single new pump in their entire fleet. I get that new pumps are expensive, close to $700. However, given that they charge my $85/month to rent my pump, you would think they could cycle in a few new ones from time to time.

Feeding pumps are critical to my nutrition. They are the only way to get my formula into me. G tubes have options. You can bolus or gravity feed with a tube going straight into your stomach. But the only option with a G/J or J tube is using a pump. That is why having a functional pump is so critical.

Tuesday we get to sojourn into Manhattan to see my stoma nurse. My stoma is yet another one of those things that has had to wait its turn until I had the capacity to deal with. Which is saying a lot because my complex care coordinator did all of the legwork on this one. All I need to do is show up. But even that feels daunting because I know it will take so much out of me.

I did save some of the best news for last. I have an appointment with a new GI. Unfortunately, the appointment isn’t until early September. But, I am on the cancellation list. This GI doesn’t specialize in gastroparesis, per se, but in reviewing her publications she is definitely knowledgeable about motility issues and PEG tubes like mine. One of her most recent publications was about the benefits of working with a wrap around care team, which I see as an extra point in her favor.