Living with Lupus: Part 2
Medication and Doctors
In January I went to my rheumatologist for a check up. With my symptoms of fatigue, joint inflamation,GI issues, etc. (I honestly I can't remember the gamit now.. It's usually the same sequence though.), He suggest I thy a drug called methotrexate. He said it has less side effects than steroids and that it would be an every week medication to make the symptoms liveable. In the fall I had tried a short dose of steroids to almost no help. So this was the next step. For those of you who don't know, methotrexate is a chemotherapy drug. This made me nervous, but my doctor assured me in the long run it is better than taking steroids. "Ok," I thought, "I trust you. So let's give this a try." I was told I could no longer drink alcohol once I started this medication. So that weekend the Patriots played in their first playoff game, I made it my last hurah with drinking. Then the following day I began the medication. He told me it would take a few weeks to a month to start to feel better.
I saw the rheumatologist in February for a check on the methotrexate progress. Again, the symptoms are too foggy, but he increased my dose and started me on a moderate dose of daily steroids until the increased dose of methatrexate kicked in.
After 6 weeks I started to feel good. The doctor told me how to taper off the steroids to come off them. When I went under 10 mg I started feeling naseous, dizzy and like I was going to faint. I called my doctor, who said some people need to come off 1 mg per week instead of cutting the dose in half each week. So I began that regimen. This left me on steroids until July 9th from something I could have been off in April.
By the time July 9th rolled around I felt good. I still had some joint swelling in my knees or the occassional headache. But these were symptoms I could live with. A week after I came completely off the steroids other joints in my body started to swell. My wedding rings couldn't get past the joints in my fingers. So I wasn't wearing them anymore. My right hip and my neck started to ache a bit. Yoga would fix these for a few days. So I thought, "I can deal with this. I'm not spending anymore time at the doctor's on more medication."
In addition to the joints, I gained 8 lbs. Usually people lose weight when they come off of steroids.. Not me! That was frustrating. I always watch what I eat due to a gluten intolerance and the weight changes that come with this illness. I hadn't changed my eating habits, but the weight came on. I gained 4 lbs in one week alone!
I also started having GI issues again. I used higher doses of the over-the-counter medication my GI doctor gave me and yoga postures for digestion and this would eleviate some of the discomfort. Again, I was not going to the doctor's if I could avoid it.
In August I ran into some unpleasant dealings at work. This pushed the symptoms into overdrive. At this point I was due to see the kidney specialist the next day and the rheumatologist in 2 weeks. I think that this is the least understood piece of this disease. Stress does more damage to my body than I gave it credit for. It causes more symptoms than the sun and lack of rest. The next time you want to be a jerk to someone, think of the battles they carry that you know nothing about. You could be doing more damage than you ever would know. (This is true if you have lupus or not, but that is another blog for another day.)
I tried meditating and it would help but not as much as it usually did. I was deeply hurt by what happened and it affected me greatly. By the time I saw the rheumatologist I was a mess. The joints in my right hip and neck were so swollen, that they pushed on my nerves. When I lied down I at night I would wake up in excrutiating pain. I am not supposed to take NSAIDs due to my lupus nephritis, but Tylenol wasn't cutting it. I took Aleve for the next couple of days. I went to yoga to stretch the joints and calm my mind, but the relief wasn't as long lasting as usual. Needless to say when I went to the doctor it was decision time. He suggested I go on IV treatments of a new drug called Benlysta. In this scenario I would spend a day in the hospital every 2 months to intravenously get a drug to help my symptoms. I would no longer need chemo. He said my next choice was to increase the methatrexate to the highest dose and do another course of steroids until the increased dose kicked in again. Or finally, I could do nothing, which he advised against.
From the moment I was diagnosed I made the choice that although this disease may not let me be Wonder Woman, I would not let it affect those I loved and what I loved to do. I still work. I still do yoga. I am still an involved mom. I gave up two things. First was cleaning my house to a cleaning lady. And let's be honest, who wants to clean their house anyways? Second was letting things I can't control bother me, as best I can. Had I done this completely, however, I wouldn't have let the work incident affect me as badly as it did. So I am still practicing that one.
So which route did I chose? Well, I chose the middle solution. I increased my methatrextae and started on another, yet lower, dose of steroids. I have made it very clear that my goal is to not be on chemo or steroids. I just made need some to get through this next 7 months. I will touch more on that in the next section.
Yoga & Meditation as a Healing Tool
While visiting my GI doctor right before Christmas, he suggested meditation. I had meditated in yoga class before. So I decided to return to yoga. I have practiced yoga since 1998. I took a few year hiatus due to graduate school and back surgery. I love what yoga does for my body, but most especially for my mind. On the winter solstice I went to a yoga class. It was so wonderful to be on my mat again. The full moon shone through the windows as I practiced and meditated. I returned the following week to meet a substitute teacher named Alex. Alex was a yoga therapist and was starting a meditation workshop in a couple of weeks. Perfect! Literally, just what the doctor ordered. I signed up and attended that workshop and one that followed. I also started an almost daily meditation practice at home. These tools made me feel strong physically and mentally. It all came together at the right time.
Through my meditation and yoga therapy practice I have come to realize to live with lupus and have a joyful, full life there are some definite life changes I am going to need to make. I think these lessons are true for all of us. Just in my case, not following this to a T means sickness and more hospitals and medication. First and foremost I need to rid my life of any toxic, abusive relationships, whether that be personal or professional.
Secondly I need to live out loud. I constantly don't say things or be myself in fear of being judged. You know what? People are going to judge me anyway. People who judge are wounded themselves and look for anything different about another person and view it as a threat. This mentatlity has lead to generations of bullying, war, and social isolation. Differences should be embraced, learned from, taught. I say to my students all the time, "Weird is a good thing!" and "How boring would it be if we were all the same." Society conditions us to think and act a certain way, and if we don't fit in that beige box, we are a threat or an outcast. Screw them! A hot pink hexagon will never fit into that beige box, and it shouldn't. It should say, "Look at me! Look at what I have to offer! I think, breathe and feel, just like the beige box." It should also see what it can learn from the box. Is the box worth it's energy and time, or not. If not, move onto the green circle. You get my drift. We all need to be ourselves to be mentally and physically healthy.
Finally, I have learned to say no. I say no when I don't feel well, or I know I have a big event coming up that I need to be ready for. That is what I am doing today, gearing up for a wedding this weekend.
Meditation and yoga have always centered me, brought me healing and solace. I chose a few months back to make a career path with yoga and energy work because it has brought me so much clarity and strength. I want to share its gifts and benefits with other people. We all have our baggage and yoga and mediation are other tools in the box to get through. Maybe if enough people try they won't look at the hot pink hexagon with disdain, but instead look at her color and shape as beauty and someone to learn from instead of a threat. This will create more peaceful people. And if my journey can help one person be more acceppting, healthier and happier, it will be worth the trip.