As my rheumatoid diagnosis anniversary rolls around, I wanted to do a year in review. I have had a total of three flares now. One was near the holidays, which I have shared. One was just a few months ago. That flare was awful. I remember it clearly. I woke up and it felt as though my hands were in concrete. They were so stiff I could barely make a fist. It felt as though the rest of my body was going at normal speed but for some reason, my hands decided that they were fine with going sloth speed. This, of course, was not conducive to my normal life.
The flare began on a Saturday, which is note-worthy since my doctor’s office is closed on Saturday. Hence, your girl could not get the needed steroids and had to figure out how to power through all the inflammation. Alexa, play Alicia Keys “This Girl is on Fire”. Luckily, my child is always willing to lend me a helping hand or two. So, when I discovered the refrigerator was just a task that I could not handle, literally, they were there to open it for me.
I am not sure if I have mentioned this before, but one of the frustrating things about this diagnosis for me is that I have lost my independence in everyday tasks. Most of the time I can still do everything I was able to do before the diagnosis and symptoms came about. However, there are sometimes, like when flaring, I just simply cannot do what I am used to doing for myself. I am extremely thankful to have the help of my husband and daughter and the resources online to help me feel supported and teach me the knowledge of some helpful tools. Did you know there were electric can openers? They are a godsend! Have you learned the belt around the refrigerator trick? Thanks world wide web! You live, you learn, and, you can keep the Luv’s, just share with others who may be going through it as well.
When I need to ask for help, I do. Don’t get me wrong. Sometimes it’s begrudgingly on the inside, but I try to smile on the outside as I want to set a good example to my child that it is always ok to ask for help.
The third flare was, strangely enough, almost exactly a year after diagnosis. I noticed that my knuckle was red and warm. The swelling came next, followed by a fever. These are the “classic” signs of a flare, and I knew I had to contact my doctor for steroids. Luckily, it was not the weekend yet! So, as I was video calling my doctor, I was able to communicate my symptoms and a script was sent to the pharmacy. This time, the flare reached my feet as well. And even as I type this, although my hands have recovered, my feet have seen better days.
I also had my year in review appointment not too long ago with my Rheumatologist. A few months back, he said that although most patients need x-rays every 3 years, I would need them yearly. This was due to both of us noticing that one of my fingers has already been bending. I would say it could more accurately be described as shifting. My finger looks as if half of it is trying to permanently drift to the other fingers as if it needs a little support. “My name is Forefinger and I have RA!” “Hi, Forefinger!” As a result, yearly x-rays are now needed.
Luckily, it did not take long to get the x-ray results. Oddly enough, after having this disease for a year and doing my annual check in with my Rheumy, there is a little part of me that still believes that this diagnosis is a mistake. I know what you are thinking. I have all the classic signs and have had 3 flares, clearly it is not. I can’t deny, however, the small part of me that believes this, and therefore I was anxious to see if there would be changes on my x-rays. Drumroll please! First, my hands, which I have felt have been most impacted by flare. Apparently, they are not showing any changes, even though my finger looks different. On the flip side, my feet show changes. This was hard news to hear. Why? I am not sure. I think still probably due to the voice inside of me that is hoping this is a mistake, maybe. It is what it is. I all adapt and be resilient and get some fancy shoes for my ever-changing feet!
What else have I been up to, you ask? Well, I read that for every 10 extra pounds of weight you have on your body, it puts 40 extra pounds of pressure on your joints. So, knowing this and knowing my weight, I vowed to lose the weight and get my weight in the healthy BMI range for my height. For me, this meant I would need to lose 23 (or so) pounds. Before this diagnosis, I would have looked at that number of 23 and seen it as huge, being more like a mountain that was insurmountable. Post diagnosis, there was no room for excuses. I just came up with a plan. I would devote 3 at home workout videos to my daily routine and include some yoga to finish my exercise.
This worked out extremely well, until it didn’t. I failed to consult experts and make a workout plan that would fit my goals. I instead, would repeat the same videos everyday which included high impact work (don’t worry I learned to diversify my exercise!). I love a good high impact workout. To me, there is nothing better than jumping around in your living room and kicking and punching the stress away. I would turn up the volume and follow along feeling incredibly strong, although if I had an audience, I am sure I looked less than stellar. Thank God for blinds. I would not allow my family to watch me in the early days, I was too embarrassed. So, no one could tell me I looked less than stellar!
These workouts continued for months until, one day I was doing an interval move where you start out with a slower jump rope move and then speed it up and I felt pain in my leg. At, first, it was just enough pain to get my attention. I stopped and shook my shoulders and started again. The next day, I tried the same workout (again, this was before I learned to diversify) and I got through most of the video with some pain, but when it came time to do the same move, I toppled over. I remember my sweet child coming out wondering what could have caused me to fall over. I was in so much pain I almost vomited. It was the kind of pain that really blinds you. It was plumb awful.
I set an appointment with my ever-patient PCP and decided that I more than likely tore my calf muscle. Therefore, I would need that referral to the orthopedist that I initially thought I needed at the beginning of this journey. The day came to go to the orthopedist and as I S…L…O…W…L…Y hobbled into his office, he agreed that the pain was more than likely from my calf. After he did his exam, where he could barely touch my leg without me wanting to hurt him, he wrote me a script for physical therapy. After having read other blogs about people living with RA, I knew this was probably the beginning of a long relationship with a physical therapist. So, I went into my first physical therapy appointment with hope, that a muscle tear, although sucky, would be ok and heal. I was wrong. My orthopedist was wrong.
After suffering through a month of pain, I finally had some imaging done. Come to find out, it was not, in fact, a torn calf, it was a, wait for it, fractured fibula! I broke my freaking leg! I was shocked. I remember just kind of chuckling when my doctor read the MRI results. He was shocked as well. My symptoms presented as a torn calf! Nevertheless, I stayed in PT and the fracture is FINALLY healing.
Did I give up the exercise? No. I am resilient, and I adapt. I found some chair cardio videos that kept me sane. I remember that after months of regular exercise, I noticed I am a better mother, spouse, and overall person if I exercise regularly. I will tell you that I did get sick of the chair workouts, but they really helped. My knee, on the other hand, is worse. I am still going to PT for it and will hopefully get some relief for patellar tendinosis, which is my diagnosis…finally.
Exercise by itself isn’t enough to meet my goals. So, what else did I change? My diet. It’s true. In my family, I am blessed to have a panel of experts. (Think healthcare workers, nutritionists, health educators, etc.) They all have shown their support in many ways, but not over-stepped, which I immensely appreciate. I think it would be very easy for them to give unauthorized advice, but they know me, and know that I would not take this well. So, they kind of wait for me to ask questions and give me the answers then, though I’m sure they all have a catalogue of information at the ready. I learned from my family, and then my doctor, that the way I was eating was, in fact, not the best. Although I was not eating complete garbage, I needed to switch to the Mediterranean Diet. I originally thought maybe I would try the Auto Immune Paleo diet, but that seemed too restrictive for me to sustain it long-term. This was a more natural fit for me and my family. Think lots of fruits, lots of vegetables, whole grain, heart healthy foods and that is how I strive to eat. I found a great meal plan that cut calories down to 1200. The plan had recipes for breakfast, lunch, and dinner plus 2 snacks. I did not follow this to a “T”, but, I did follow the lunch and dinner recipes. For breakfast, I would just eat something low calorie, but still “allowed” within the diet. With this new diet (which is not really a diet to me, more like a lifestyle change) and the added exercise, I was able to lose weight and get into the healthy BMI category for my height. However, due to life stresses and steroids, I have gained some back. Now, time to get back to my pre-flare shape…