I still remember the first time I took Prednisone; it was quite an experience, to say the least. First, most of my pain and symptoms just seemed to magically disappear. Then, there was the euphoric buzz that made me feel like the Road Runner with Acme rocket-powered boots, after drinking a couple of cans of Red Bull. Last was the hunger–a hunger that I never experienced before in my life. I started to eat so much, that I felt like a Hobbit: first midnight snack, second midnight snack, and so on. (Don’t even get me started on how much I ate once I actually ‘woke up’ for the day!)

My weight gain was so immediate, that during my follow-up appointment my rheumatologist kindly suggested that I opt for healthy snacks, such as apples. And all I could think of in response was: are you kidding me…apples? Give me potato chips, give me cookies, give me ice cream, and give me pickles!

Fast-forward a few weeks, and I quickly realized that I had to come up with a better action plan for future prednisone tapers, when it came to snacking. And even though I haven’t done a prednisone taper in almost a year (last time around, I reached a point where I was really concerned about the withdrawal symptoms that I experienced), should I need to do so again in the future, these are the two things I will get ready the day before I take my first dose, just as I’ve done so many times in the past.

PRODUCT INFORMATION

Presto 04830 PowerPop Microwave Multi-Popper

Okay, I remember a time when “healthy” popcorn meant air-popped popcorn…and no matter how much I tried to pretend that it tasted good, it didn’t. This microwave popper solves that problem. Even without butter or oil, the popcorn it makes is both tasty and healthy. Additional benefit: once you calculate the per-serving cost, it’s much less expensive than traditional microwaveable bags of popcorn.

More info: www.amazon.com/Presto-04830-PowerPop-Microwave-Multi-Popper

Disclaimer: No material connection. I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned.

PRODUCT INFORMATION

Jell-o

When I’m in a taper, I can never eat too much jello. I prefer the type from the box, with real sugar. (I don’t like artificial sweeteners; it’s a taste thing.) Here’s an interesting bit of trivia: nine boxes of Jell-o are sold every second in the U.S. Additional benefit: if you’re missing the alcohol, due to all of the medicines you’re currently taking, with a little imagination you can pretend you’re downing jello shots!

More info: www.amazon.com/Jell-Gelatin-Dessert-Strawberry-3-Ounce

Disclaimer: No material connection. I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned.

What tricks do you use to keep off the prednisone pounds?

Stay tuned…for the next adventure of Rheumatoid Arthritis!

The other day, I quickly skimmed an article (I can’t remember where) which has as it’s basic premise the theory that rheumatologists needed to show more empathy towards their patients. I’m not sure if I’m in agreement with such a statement, primarily because I don’t really know what this statement actually means, in practice.

Wikipedia tells me that empathy is “the capacity to recognize and, to some extent, share feelings (such as sadness or happiness) that are being experienced by another sapient or semi-sapient being.” Okay, so I know what this definition means, and I’m certainly not advocating for a lack of compassion in the medical world, or in any other professional relationship for that matter. But this is exactly what I consider my relationship with my rheumatologist to be: a professional relationship. And as with all of the many professional relationships that I maintain on a regular basis, the degree and the nature of any personal connection varies drastically, but usually is somewhere on the low end. (Otherwise, of course, I would call it a personal relationship.)

I often hear people complaining about the fact that their rheumatologists do not validate their pain. With this I can relate, because for years, I used to say as much. I’ve written before the finding a good rheumatologist is a lot like dating…the more expectations there are going in, the harder it is to find that perfect “mate.” After a couple of unsuccessful doctor-patient relationships, I finally asked myself exactly what it was that I was looking for from a rheumatologist. Thoughts of validation continued to hover in my mind. But as I continued to think about what this actually meant, I wondered of this was really what I was looking for. My answer was: no.

Now, I certainly need a doctor to accept the fact that I live with an autoimmune illness, even though I continually have the squeakiest-clean lab reports. If I ever encounter a doctor who tells me that there is nothing wrong with me (as I have on various occasions), right then and there I know that this isn’t the doctor for me…and move on to another one.

But once I’m working with a rheumatologist who accepts my diagnosis, what am I looking for then? Empathy? Validation? Not really. What I’m looking for (and don’t get me wrong, I’m not a cold-hearted person at all, it just goes back to how I approach professional relationships) is someone who can perform physical examinations and minor procedures, prescribe and monitor pharmaceutical treatments, and accurately interpret my lab reports.

And this, in a nutshell, is what I look for in a rheumatologist.

Anything extra is exactly that: extra. And just like dating, as soon as I lowered my expectations, I found a wonderful rheumatologist who I have been working with for the past couple of years. Yes, we have a relationship that goes beyond the three items that I listed above…there is a lot of humor, teaching (in both directions), and respect. In the past, when just nothing seemed to work, I often saw the pain and anguish in his face, the disappointment he felt with not being able to do more. Was this empathy or validation? To some people, it might have been. To me, it was a sign of a doctor who obviously wanted to do his best to treat his patients with the tools that he had; more importantly, it was a sign of professionalism.

I’ll add one more item to my list of what I look for in a rheumatologist, which I previously failed to mention because even if it’s something that my doctor does not practice, it’s something that I practice myself. And as an example, I’ll use my current rheumatologist: every option, every medicine, every procedure that is offered to me is presented as a question, as in “We could do x to you knee, do you want to do this?” or “You could take y medicine, do you want to take that?”

And then, it’s up to me to make my decision, and answer his questions. And whatever my answers might be, they are always accepted without judgment. Case in point: once, he offered to drain excess fluid from my swollen knee. I knew this procedure would provide some relief, but on that particular day I just knew that I didn’t have the strength to have a needle inserted into my knee. So I took a pass. This was okay with him, and it was okay with me.

Yes, we have the right to expect professional, kind service from our rheumatologists, and shouldn’t settle for anything less. But our doctors are only human, and have been trained in certain specialties. Rheumatologists should be aware of the psychological impact of the diseases that they treat, and should make the appropriate referrals when they see that a person is struggling with depression or suicidal thoughts…but the professionals who are best suited to deal with these issues are psychologists.

And when I myself needed this emotional and psychological support a few years ago, I did myself a favor and found a psychologist to work with. It was at this exact moment in time when I found a rheumatologist who provided everything I was looking for. A major factor of this success what setting appropriate, and realistic, expectations for each one of my relationships with various healthcare professionals.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

One of the most accommodating changes that I’ve made over the past year has been not making any commitments before 12 noon. If I’m doing fine, this means that I have a little more free time at the start of my day. During times like now, though, when moving in the morning lies somewhere between ‘very difficult’ and ‘just plain impossible,’ this means that I have one less item to stress out about, when I eventually get started on a rough day.

This morning, I woke up slightly earlier than I would have normally woken up (that is, if “early” can even be applied to 11:30 a.m.), had I let my sleep run its course. Not that I’m complaining, though. You see, every Sunday I am served brunch in bed. (I told you I wasn’t complaining!) As I woke up, and stuffed some pillows behind me in order to prop myself up into a semi-upright position, the first thing I noticed was how tired I was…and I’m not talking about ‘sleepy’ tired. Instead, I’m referring to an all-out, below-zero, tired. Oh, and the pain…I started to wonder if I’d even have the energy and the strength to feed myself.

Once I saw the pile of food in front of me, however, I somehow managed to find a few precious reserves of movement. (I guess that having eggs, potatoes, sausages, pancakes, a fruit smoothie, and a cup of coffee within arm’s reach can be a very motivating factor.) I made a beeline for the fruit juice: freshly blended papaya juice. Even when my energy levels are at their lowest, a big glass of papaya juice always seems to give me a noticeable power boost. After drinking two large glasses, though, I still didn’t feel a thing. That’s when I knew that I had best stay in bed and rest as long as possible, even if it meant not moving until mid-afternoon. (Which is exactly what happened.)

During those few hours, between eating brunch and finally waking up at 2:30 p.m., I didn’t even have enough energy to stay awake. I quickly drifted back to sleep. (An interesting side note: I’ve acclimated by now, as evidenced by the high hemoglobin concentration levels in all of my blood tests, but I live at such a high altitude, that the body’s digestive process actually slows down. First-time visitors are often stopped in their tracks–literally–after eating large meals, as their bodies struggle to power normal body functions, in addition to digestion.)

And as I slept, I sensed the pain. Yes, I was completely asleep…but just because I’m asleep doesn’t mean that the pain signals being sent to my brain come to a halt. So as I dreamed, I was just a little more aware of everything that was happening than might normally be usual. And in my dreams, I was at yoga class. Surprising, because I haven’t practiced yoga for quite a while now…but not too surprising, because I recently received an email from my former instructor. In this message, right after the greetings for the new year, she shared how she’s switched from practicing power yoga to practicing silent meditation on a regular basis.

And this, I guess, is where all of the pieces came together. (As I said, I’ve always been more aware of my dreams than most people…even more so when I’m sleeping with extreme pain.) In my dream, as I rolled out my yoga mat, I looked up at my instructor and told her that I was no longer able to participate in class, but that I was just going to observe. Was this okay? She told me that she understood…and then, she told me: “Even if it seems like the trees are being madly blown around by very strong winds, don’t ever forget: your little nest will always be at peace.”

And even though she has never told me such a thing, is sounds exactly like something that she would say. But, without getting too deep into the meaning of everything, I guess that I was really speaking to myself. And this is how, on one of my most challenging days in months, I woke up with a smile on my face, and with one tear running down my cheek.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!