It has been a rough winter, both physically and emotionally. I finally got back on the road to health after my encounters with a few flares and now I reside at 40 days without flare-up. A far cry from where I was but I have to meet myself where I am right now. I teach this in all my yoga classes since every time someone walks into the studio they need to climb on their mat as though they are climbing on for the first time without judgement or expectation. I’m in a place in my health where I need to take my own advice and meet me where I am without judgement or expectation. What worked for me a year ago or even a few months ago may not be what will work for me going forward. This is where I start over and re-evaluate my health and my approach.
One of my goals is to go back to basics and work on doing the best I can every day with what my body has to offer. This means a lot of walking again, keeping up my daily yoga practice and teaching, some spinning, very little weight training (only due to the sore in my joints, not because of muscle issues) and eating as healthy as I can. Here is where I find myself stuck, I know exactly what needs to be done, I have been doing this for 14 years, I give advice to other people about what they could try and yet I find myself in a circle of fatigue and needing convenience. There is a balance and finding the balance is the focus, finding the will and strength to push through long enough to find the balance is the struggle. This is probably why I have been dealing with flares off and on all winter. Every time I make some headway my fatigue and body get in my way.
So my first step is to get back outside and walk in the fresh air as much as possible. Obviously the temp has to be high 30’s F or greater for this to happen but believe it or not we have had a several day. While the rest of the US is looking at spring in a couple of weeks it can be end of April before we really experience spring in Maine so I grab any mild day I can and just bundle up and walk. My body and soul actually feel great and I find myself smiling each walk I finish. This doesn’t mean I cannot walk inside it just means I prefer not to. I’m being tested and just have to take each day as a new day and figure out what I need that day. Sometimes I choose correctly, but sometimes I don’t. Even after all these years I’m still trying to find the balance that works.
After 245 days I had a flare, therefore, I go back to zero. However, I had a couple of signs that it was coming and it came and went quicker than normal so there are some positive aspects to this flare. Last week I was feeling very out of sorts, my mind wasn’t quite right and I was forgetting stuff. My fatigue level was way high and all the while I’m think that this is “normal” life stuff. For most people might be normal life stuff, but for me it is much more and I should have known that I was on the verge of a flare. Not that I would have done much at that point but to recognize it would have been good. On Saturday my fatigue level was overwhelming and although I taught my yoga class and took a couple of yoga classes I didn’t have a lot of energy for anything else that day. Again, I should have recognized but didn’t take notice. Sunday I woke up and my wrists, elbows and shoulders were so sore. I really thought that I had over done my yoga work. I do hours upon hours of yoga, why I thought that is still unclear to me but that was the biggest tell I had that I was going to go into flare.
I went to my yoga class, taught the class and as the group was moving to savassana I realized I was moving into flare. I have a short amount of time before it becomes very obvious to people that something is wrong so I ended class and got into my car. I took deep breaths the whole way home and when I got home my body went into full flare. I had the shakes, the pain, and the illness that comes with a flare so I climbed into bed and went to sleep. During sleep my body is able to recover so I after several hours of sleep I woke feeling much better. The thing that I need to remember about my flares is that they are fast. They are painful but they are fast. If I were to get the flu or a cold I could be down for couple days or even several days but with the flares I’m down for several hours. My body was not able to do anything Sunday except for rest and although I was able to eat and drink that was all I had. However, the next morning I woke up feeling great. I was able to do a gentle walk and although I’m still dealing with fatigue my body feels much better.
The thing I learn with each flare is that I have signs if I would just listen and my flares come on fast but leave quickly. My flares knock me down but then I’m able to get right back up and do what I need to do. The other thing is that my flare was on a Sunday so it doesn’t really interrupt my life except for that important time with my husband. He is very understanding and realizes that this too will pass and we will have next weekend to enjoy each other. We had 35 weekends to spend together flare-up free and I’m hoping that this day starts my journey to another 35 weekends or even longer.
I’m please to write that I’m not 157 days without a flare. Although I haven’t had a flare my body and mind are very tired. The seasons are changing and I feel it in my body and my bones. My Raynaud’s is more prominent so I have to keep my hands covered and warm as much as possible and the cold is sitting my hips and knees. It is interesting how weather and seasons can have an effect on our bodies and even my mind to some effect. As we move into winter I feel as though I go into protection mode, making sure I’m doing all I can to stay well, stay far from illness, try to get more sleep and rest and my exercise moves inside.
I’m still doing my yoga teaching and practicing on my own but as we move into the winter I really yearn for that hot yoga experience which I’m not involved in due to time really. I teach in a regular studio and practice in my home so my goal is to find one time a week to enter a hot yoga studio and do some personal practicing. I’m looking for that quiet time on my mat where my practice can be my own instead of my own practice be preparation for my classes. There is a fine line between teaching and practicing and how to separate the two. I think that is why many people love yoga and would make great teachers but choose not too because you lose a bit of your own quiet, time on the mat and moving to how your body moves vs how you think your students will move.
I took a trauma sensitive training course this past weekend for my yoga instructing and it was both inspiring and overwhelming. Many people turn to yoga to help them through their trauma. Many people experience trauma in different ways and handle it differently. The training was around severe trauma but as you listen to stories and you reflect on your own life so many people are plagued by trauma. Losing loved ones, living with illness, your own or someone else’s, abuse, addiction, war, pain, suffering. There are so many aspects to trauma and what people go through. As I’m listening to stories and reflecting on my own life, I feel gratitude, so much gratitude because I’m not living with trauma. That doesn’t mean I haven’t felt loss or pain, it doesn’t mean I’m not dealing with health issues, but it means that I feel like every morning I wake up I’m in a state of secure, love, health, happiness and contentment and feel grateful for this place.
I turned to yoga as an outlet to bring me better health and what I find is that it isn’t just my own yoga that brings me better health but sharing yoga with others brings me better health. I learn from the people I’m around. I take a little of their energy with me. I give little of my own energy to them. We are in a community of sharing, caring, healing and giving. As I move into winter and my body might flare I know I have the tools to recover quickly so although I’m thrilled about 157 days without a flare, I don’t fear the next flare.
My body was giving me all kinds of signs to slow down and rest, but dealing with life stuff was making it hard to take the time needed to actually listen and do something. This past weekend I didn’t flare but my body was very stiff and my hands were so sore and swollen that when my husband asked if we could go golfing on Saturday, I literally couldn’t hold my golf club. I walked beside him in the sunshine and fresh air stretching out my sore hips and knees but a golf course on Saturday doesn’t lead to power walking, more a stroll around the course hitting the ball and waiting for the team up ahead. I actually enjoy walking golf courses more than I enjoy playing golf courses. If only early mornings they would allow people to walk them for exercise, that would be great.
The following day we decided to go hiking which is a great way to be outside and together and I didn’t need my hands at all. Some hikes require walking poles but this one was just a leisurely walk in the woods and very relaxing. After a weekend of just taking it easy, no moving boxes or stressing about what happens next my body was able to find that calm zone again. I do feel that there might be a flare right around the corner so this is where I really have to listen, take notice and try to be as kind to myself as possible.
I’m teaching a lot of yoga classes the next few months but that doesn’t mean I have to do all the classes and my plan is to just use verbal cues for half the classes each week and then practice the other half. I’m in a studio where it is preferred that we do the poses with our students, but each studio, each principal, each instructor is very different and some teacher trainings prefer to not have their instructors practice. Although some students feel it puts the instructor at a power level and there is no power struggles in yoga, at least not for me.
I will explain to the practitioners before each class if I’m not practicing and why as to make sure that there are no triggers for anyone. Yoga is very personal and people come to their mats and our studio for all kinds of reasons. As an instructor my soul purpose is to guide them and allow them a place to explore their own space. I’m brought to my mat each day for different reasons as well and every time I climb on my mat I am deciding if I’m restoring, powering or finding a balance between the two. My favorite class that I’m teaching right now is restorative yoga and although many people come to their mats to sweat, work and release stress, sometimes people need to be reminded that rest and restoring is very important too. I’m finding that my class is growing in numbers since the word is out that people should slow down and the let body heal between their more intense sessions.
I’m in rest mode and trying to keep a flare out of my way but also know that if I do have a flare I can come out of them quickly as well. Life is about balance and even when you think you have found it, it is time to look again.
I went 300 days without a flare and on day 301 I went back to zero. I got lulled into this false sense of security that I was on a new medication and perhaps my flares were over. I need to remember it is not a matter of “If, but when” and be ready for them. If they come once a year that is far better than every 60-90 days. I have hope that I can get more than 300 days next time. So, everyone asks me what can I do differently or what brought this flare on and what can I do next time. My husband and I are in the middle of selling our house and building a new one. We are doing this to be closer to family, to shorten our commutes and to make the quality of our lives better in our “middle years” but the stress that surrounds this endeavor is overwhelming and stressful to say the least. I’m not 20 building a house like I was the first time I did this and I also didn’t have MCTD the first time I built a house so I knew this year in general was going to wear me down.
Friday night we were sitting on the couch talking and discussing our plans for the weekend and I started to smell gas. My husband said well you are going to flare so we have to rethink the plans for the weekend. He reminded me that I smelled gas the last time I had a flare. I had to look back in my journal and sure enough at day 285 I smelled gas and flared the next day taking me back to zero. Smelling gas is a sign so now I know what to look for but what I do about it I’m still unsure.
I woke up Saturday morning and thought I feel ok and went to teach my yoga class thinking I had either beat the flare or it would come on Sunday. I got to class and in the warm-up my body started to stiffen, and the shakes came and the sore throat was so severe. I had 60 minutes to finish this class get in my car and home to bed. I finished my class, called my husband and he got the heating pad ready, fluids ready and was there to greet me to take me to bed. The fever came on and the pain was so unbearable. I ended up finally falling asleep and sleeping soundly for several hours. When I woke I felt mildly better but still as though I was hit by a huge truck. The rest of the day was spent drinking fluids and falling in and out of sleep.
However, Sunday I woke up as though nothing had even happened so I was back to day 1 and went to my yoga class to teach a full on class with no worries. I did take it easy the rest of the day to ensure that truly got my strength back but I felt so much better. Today I am back to my exercise routine and back to eating lots of food again and feeling great. Now my job is to take the next 300 days to research and see what I can do when I smell gas to try and either prolong the flare or just not have a flare. I don’t exactly know where to start but I have some time to figure it out.
I have been taking my new medication for nearly 2 weeks so a couple of days ago I bumped from 500mg to 1000mg which is the plan to keep me at unless I find I need to increase again. I have had no ill effects from the new medication in a few months I can start to try and back off of some other medications. The new medication I’m taking is Cellcept which is designed to help kidney transplant patients accept the new kidney easier but I guess is there is also research to show it can change the course of Lupus and MCTD. There are a lot of unknowns but I’m willing to try if it means taking care of the disease and not just fixing the symptoms which I have been doing for 13 years. It is an immune suppressant so it means that my once super human immune system is even more compromised and I can pick up every common cold or flu bug like everyone else now. For 13 years I didn’t worry about getting sick because my immune system was on overdrive. The problem with an overdrive immune system is that it doesn’t know when to quiet down again and therefore I would end up in flare. Today I’m at 278 days without a flare and if I do flare I will need to stop taking Cellcept until it is over and then I can start again. Also, I understand that if I do get sick I will need to stop taking the Cellcept until I’m better which means I will likely flare but I will cross that bridge when I get there. The hope is that I can change the course of the disease and put the flares behind me. I live in a world now of when will I flare not if. Going forward it is likely that might change to if I flare which I’m excited to see happen.
Every day I wake up I feel like I’m testing the waters for that day and trying new things. Being flare-up free and doing so much yoga and meditation it is helping me put a new life into perspective. I am looking forward to a new future.
I have been taking my new medication now for 5 days and although I’m 295 days without a flare, I actually think the new medication is making me feel even better. One of the possible side effects is insomnia but I have not experienced that and have been sleeping great. I wake up bright and early feeling refreshed and head right down stairs to take me medication. It has to be taken on an empty stomach and I cannot eat for a few hours so this way I get into my body and it absorbs while I’m working out, getting ready for the day or enjoying a quiet morning with my husband and kitties. I have not felt any dizziness, sickness or other ill side effects. My body seems to be responding well to the medication and in another week I will increase the dosage to the amount in which I’ll stay. We are easing me into in hopes that my body reacts well to it and since I’m still taking prednisone and plaquenil as of right now my body seems to be reacting very well. In a few weeks I can start to back off some of my meds and see what happens. I so look forward to the day when I try to back off of prednisone even if just a little and hopefully no flares. I usually go into flare as soon as I play with the dosage of prednisone so this will be the greatest test of all.
I have another appointment in a few weeks to see what my blood work looks like after using this medication for a couple of weeks. I’m interested in speaking with the doctor again because the last time I was there he re-categorized me as having Lupus but all the research I show doesn’t indicate I have Lupus but still have MCTD. I wonder if my blood work indicated a change or if there is a different reason he uses that term with me. I have always said I don’t care how the doctor’s categorize my disease, I care more about how we manage it but this is stumping me a bit as I have never thought of myself as having Lupus in 13 years and really don’t believe I do so I need some clarification. My family believes he uses that term because, well, there is such a similarity between the 2 diseases and Lupus is easier for insurance, doctors, and patients to comprehend than MCTD. I see them as very different. With Lupus it can affect the skin which I do not have any issues with and also internal organs which my internal organs are functioning very well. I know it is odd to be in the MCTD category for 13 years and there is usually some sort of over-lap or switch to a different more severe autoimmune disease such as Lupus but I don’t believe I’m there.
Research and open communication are key with working with autoimmune diseases and understanding the information we are receiving is so important. I don’t understand the information I have received, my research doesn’t confirm the information I have been given, therefore it is my responsibility to have an opened conversation with my new doctor and get clarification.