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.
I have not been paying much attention to my blog lately other than weekly check in with steps but the truth is my MCTD is pretty quiet so I haven’t had much to discuss recently. I am not complaining about a dormant MCTD but I do think it is time to do a full check and reconnect.
I am at 242 days without a flare and with the extremely mild winter that Maine has had this year I have not even suffered from Raynaud’s much either. My fingers are feeling much better and using the compound seems to have helped the issues I had over the summer. I have to see the doctor again and have updated X-rays done to see if the calcium deposits are really smaller or gone but my fingers in general really feel much better.
As many of you know I am completely committed to my yoga practice and teaching these days so although my steps are right where they need to be I am not focusing on walking, spinning, or other cardio activities as much right now. I am in the yoga studio or at home doing yoga every day and that takes a lot of time. I was listening to a podcast the other day that said don’t let hobbies get in the way of people, relationships and family. I think my husband would whole heartily agree with that statement but also realizes that I need to take this time now to establish myself as a yoga instructor so I can do more with it in my future and see where this may take me. I love teaching, I love learning and I love doing yoga so all in all it was the best decision for me to make at this time in my life.
I do hope to find a nice balance between my yoga, cardio, weight training and of course my family and friends. If only I could get my husband to join me in doing yoga I would be able to spend time with him while we did yoga but that is not likely for at least for the near future. Perhaps as we move forward into our mid-lives it will inspire him to stay flexible and work on yoga for his body and mind. Speaking of mind, my meditation practice is dialed and do get a few moments every day to sit quietly and just breathe. There has been some research recently that states that a daily meditation practice could help with autoimmune diseases and chronic pain. Find ways to relieve stress and finding ways to ensure that I don’t get over fatigued greatly helps with my MCTD and chronic pain, therefore, meditation is a great tool for both of those things.
With 242 days behind me I forget that I even have MCTD some days but I am also not new to having a long stretch being flare-up free and then having that flare that takes me back to zero. I half expect it any day but I also don’t expect it to ever come again. As we age and our hormones change that can also help with reducing the frequency of flares, good sleep, moderate eating, reducing stress, mindful activity, giving and receiving love and peace all help in managing the symptoms of autoimmune diseases.
I look forward to my next doctor appoint to see where my numbers are and what my X-rays look like and can make adjustments from there, but until then I will continue to do what I do and hope for many more flare up free days.
Just another couple of days until Christmas and truly my body is feeling the effects of lots of eating, chatting and being off schedule. I am ready to have the holidays come and go so I can get back to my regular routine. As I have written in many past blogs I do not partake in the alcoholic beverages since it really can put me into flare quickly and without much effort. I am 178 days without a flare and not about to get one now when my body is already tired and teetering on the edge of exhaustion. However, I have been walking more do try and combat the terrible eating I’m doing. Yes I’m keeping it gluten free but not sugar free and it has really worn me down. My yoga practice is great and I have also been able to find myself in the Bikram studio for some warmth so I’m happy with the way my body is performing just wish I wasn’t so tired.
Weekly stats – 97,725
Daily – 13,104
Miles – 36.46
Floors – 141
Hope you all enjoy a safe holiday season and that your bodies are holding up
I fell off the edge of a flare into full blown flare. It was nearly 290 days but unfortunately I go back to zero and start over. I am not at my base line yet and I know I have to be very kind to myself as finding base line again will be difficult and it may be different. It seems every base line changes from time to time. I did increase my prednisone to try and help the symptoms and feel better but then I have to come back down off of it which is challenging for my body. This body needs things right all the time and I have not been handling my stress and work life very well. Is this my trigger? Is travel my trigger? Is adding hours of yoga to an already full day my trigger? I don’t know what my trigger or triggers are but I do know that I am starting over and have to take it 1 day at a time again.
Truth is, I feel completely bummed by it. I forget sometimes that I even have MCTD until I am quickly reminded and my body decides that now is the time to stop react and remind me to take it easy and get things under control. Until I find this control I will be resting, walking and doing my yoga. Speaking of walking, I also have my stats for the week
Total steps 90,025