We have rolled into February and although it is a short month it seems so long. About the time we get to February and especially March in Maine I’m completely over the thought of winter. However, that does not make a bit of difference. I still have a few months left to endure of cold, snow, sever Raynaud’s, cold bones, and achy joints.
I am 5 injections into my new medication and the last injection did not come with any symptoms. I was getting flu symptoms 2 days after my injection, but this time there was no flu, no fever, no symptoms of any sort. I am getting better with the actual injection part as well and there is no pain. This is much easier than I thought it was going be. I’m trying to wake up every morning and do a quick analysis of how I feel and journal. My hope is that I will start to notice some less stiffness or maybe even some less achy joints. The worst part is when I first wake up, but it only last a few minutes. By the time I’m ready for my workout my body is ready to go.
I have been really focusing on my weight training this new year in hopes that if I can build muscle and take this new medication perhaps I will not flare as easily when my body goes into healing mode to build my muscles. It seems so counterintuitive to weight training and flare while I heal, but I also know I need the weight training and the strong muscles to keep strong and healthy. I’m only 32 days without a flare, so not that long, but my hope is that with this new medication I can increase my days without a flare to many, many more.
My second injection was Wednesday and I was pondering between doing it in the morning or in the evening. Benefits to both for my schedule, however, my husband had an early appointment which meant I had the house to myself for the morning. I decided I would do it alone since this was my first time doing it myself without the nurse’s supervision. The injection went well, no issues, pretty un-eventful and no pain. Just the tiniest bit of burning as the medication enters my leg, but more like a hotness not really burning.
Totally successful and on my way to start my day. The whole day went well, regular exercise and eating and basically forgot I had even had the injection. Woke up Thursday morning and felt fine. Got up did some walking and yoga, had no bruising and carried on throughout my day with no issues what so ever. Fast forward to this morning. I woke up at 3am with a fever, sore throat and pain in my neck and back. It felt like a flare was coming, but I didn’t have the shakes and there was no pain in my hands, wrists, elbows, feet, legs or face. This was not a flare, but rather maybe a sign that my body was getting used to the medication as I was not have other flu symptoms and once I got up and around the symptoms I did have were decreasing.
At this point, still late morning and still have a fever and sore throat but the other symptoms are gone. Maybe next week the symptoms will decrease a little more. I’m sure having this medication go into body is just causing my immune system to take notice and make sure nothing to serious is going on. I would say this was successful. The good news is I have 50 more chances this year to take notice and analyze. I’m still very conscience of what I’m eating although I have only be strict for 19 days as I started first of the year, but even with a few weeks of clean eating, more sleeping, exercising, and meditating I feel a little better each day and feel like I’m managing my MCTD/Lupus a little more each day as well.
After my meeting with the student panel on March 22 I woke up that next morning with a tender pointer finger. I didn’t know if I had bumped it or if having all those hands touch me the day before if my hands and fingers were just sore or if something else was going on. Friday morning I woke with a full infection in my finger, my whole body was aching from pain and I was so sick I couldn’t keep water in my system. I immediately went to the doctor and found out I had a scleroderma ulcer. How I got it I have no idea but it is a long road to recovery. My hands were so swollen and sore, my whole body was working overtime to take care of this infection and since I take an immune suppressor I had no immune system to fight with.
I got an antibiotic and stopped taking my immune suppressor immediately and that was nearly 3 weeks ago. I didn’t know I had scleroderma and honestly I might not but with Raynaud’s as a secondary disease vs. a primary disease I run the potential of having these scleroderma ulcer issues and now I know I’m far better off to try and prevent them instead of heal them. It takes a very long time to heal one of these ulcers and the pain that goes along with the ulcer is more than I am used to. I deal with a certain level of pain everyday but it is manageable this was so extreme it made me very sick.
How do you prevent these types of ulcers you might ask? I’m still researching and digging into this subject. Keeping the hands as warm as possible is a key ingredient but that is a key to having Raynaud’s in general so in this case it was not enough. There is also a need to keep a fair amount of blood flow and being able to open those vessels. I’m in the process of using a higher dose calcium blocker to get blood rushing through the body but it doesn’t make me feel great and leaves me with some annoying headaches so my hope is I can use the higher dose while I heal and then use the lower dose which doesn’t make me feel weird the rest of the time. I used to only use it in the winter but may need a little all year long. I’m also going back to hot yoga several times a week. I teach in a regular studio and although yoga is good for circulation I think the hot studio helps me a little more. I’m still teaching but looking at teaching in a warmer environment. I love teaching yoga but I also know that I need to do some self-focus so I am not teaching as much as I like and going back to being a regular student. I have also gone back to daily meditation as a way to breathe deep and take some time to reflect on my life and my situation. It is a work in progress every single day and some days I feel better than others. Some days I have been feeling very frustrated and some days I have been feeling totally exhausted. Those days of exhaustion I am taking care but I am still walking and doing yoga every day even if I don’t necessarily feel like it. I will write some more about techniques I’m trying and how they are working as I go through the process.
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.