HEALTHY BODY, HEALTHY MIND, HAPPY HOLIDAYS

I haven’t written in a while but have not had a lot to write about. This is a good thing actually because it means that things in my life are relativity in balance. The point of this blog is to tell my story about MCTD but that story is very much the same day after day. I’m at 217 days without a flare which is wonderful and I’m very grateful that my body is feeling good. I am still working out every single day whether it means walking, spinning, or weight training. My yoga practice is a daily adventure whether it is my own practice, preparing for yoga classes, or teaching. My body is strong and most days I feel like my mind is strong. However, this time of year the days are short and it is dark when I go to work and it is dark when I get home. This time of year can be stressful for some people and even bring on depression. We are rushing from place to place, trying to prepare for events, eating and drinking more than we might normally, sleeping less than our bodies need and feeling the stress throughout our bodies and minds. Many people are rushing around so much that their immune systems wear out and illness takes over. I live with MCTD therefore I have a “super-immune system” I don’t worry about the common cold or flu. I don’t worry about picking up germs from the places I go. I enter a gym atmosphere nearly every day, which other than an airport might be one of the germiest places on earth. What I worry about is running my body too hard and putting myself into flare.

This time of year we must make choices, and they won’t all be easy. I thought I would write about some of the things I do in order to stay flare-up free during the holidays and winter months. I am not saying I don’t or won’t flare during the holidays or winter months but I try to keep things quiet in order to stay flare-up free for as long as possible. In Maine our winter started several weeks ago and will take us into April. It is long, it is cold, it is hard to endure sometimes. The way I get through this time is simply one day at a day time. Each day when I wake I take inventory of how I am feeling and then decide what my body needs. I will do something every day even on days I wake up a with some fatigue. I can always walk, as long as my legs will move, I can walk. I find some days it is actually easier to walk than to do yoga. Even if I choose restorative yoga because my body doesn’t always want to bend and move in certain postures.

This time of year we are invited to many events as most of you are, until I was diagnosed with MCTD I rarely said no to things even when I should have. For the last 13 years I say yes to the things that most important to me and my husband. Our families will always be high on the list and if I can help it we do not turn down family events. I also choose 1 evening event a week, this way I’m not out late 2 nights a week. We may do something Friday night and something Sunday during the day but not two late nights. This ensures that my body receives the adequate rest and sleep that it needs. I’m not hyper vigilante about what I eat this time of year except that I make stuff I really want. On Dec 26th that is when I go back to being hyper vigilante with my eating and drinking and let my body fully recover. By New Year’s I am not looking to go out or make resolutions I’m looking to start my new year fresh, clean and re-offer my body everything it needs. Think of it as a back to body basics cleanse.

I meditate a lot this time year. I take minutes in the morning to reflect on the day ahead and things I might have done differently yesterday. Not with anger, or regret, but as ways to learn and do better today. I take minutes to watch my thoughts, make my thoughts cleaner, and notice days when I really don’t have a lot of thoughts. I take this time for me, the time in my life that truly belongs to me, not my family, not my work, not my yoga, not my trainer, not my spin instructor, truly just me, only me. Minutes, not several minutes or an hour, minutes in my day.

This holiday season is going to look different to each and every person, but my goal in this holiday season is to capture the joy, love, peace and calm that it brings. Happy Holidays to all.

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WINTER IS AROUND THE CORNER

With winter around the corner my body is starting to feel it and react to it.  What happens with my body in the winter months?  My Raynaud’s is in full gear which makes it hard to feel my fingers and toes, as well my hands are more swollen in the winter months which means I have trouble making a fist or able to grip objects.  In my weight training class I noticed that my grip was not strong enough to hold my regular weights.  This means I need to weight down, or use a less weight and do more reps.  I recommend anyone else that lifts weights and have these issues make sure you are talking to your trainer about what happens to your own body when winter is near.  I also suggest being very kind with your words and not being too judgmental with yourself.  It is perfectly fine to use a lesser weight at any time that your body is not feeling a 100%.    At my weight training session I tried using my regular weight but quickly realized that was not a great idea so I was honest with my trainer and said that my grip and muscles just couldn’t do it.   What I did in the weight training room last time is not indicative of what I have to do each time.  I must listen to my body and do what is appropriate at that moment for that day.

This is the same thing I teach in my yoga classes that each time a student walks into the yoga studio it is a new day and working with what you have on that day is the most important thing.  Again, without judgment and without stress.  It is much harder to use this philosophy with myself and so much easier to offer this compassion to others, but the truth is if I’m not honest about my capabilities I could really end up hurting myself  and not being able to lift weights at all for several weeks.  I need the weight training to keep my body strong.  My body loses muscle mass quickly with the MCTD and age so weight training regularly is a must.  I do use straps as well to help me grip heavier weights but also do not find shame in powering down and turning my weight training session into a success.

I do find that my body might not be as sore the next day with less weight and more reps but I do know that it is still working and keeping my body strong through the winter months.  There will be times this winter when my body will feel great and my hands will be ok to lift heavier weight and on those days I will take full advantage, and on days when my grip just isn’t there or my joints don’t feel up to it then I will modify and luckily I have a trainer that understands and makes the modifications easy and doable for my sessions. Only 6 months and ticking down to when the weather turns warm again and my body feels better on a regular basis.  This time of year is also when I need to be very diligent about my eating and sleeping to ensure that I’m allowing my body to have every fighting chance.

157 Days without a Flare

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.

LISTENING TO MY BODY

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.

MY FIRST FLOAT

I did my first float last night and wanted to describe in detail what that experience was like for me.  First, let me start by discussing what floating is and how I got interested in the first place.  I have been listening to a lot of podcasts over the years and the term floating comes up quite a bit.  Float tanks are sensory reduction tanks in which you climb into a pod (or something similar) that has 12 inches of water and 1200 lbs. of Epsom salt.  The idea is that you float on your back and feel completely weightless as though you are floating in space. It is typically dark and quiet to let your mind and body completely relax.  I will back up a little bit more for a moment.  Years ago my doctor had mentioned that when my joints and body were really stiff, sore and swollen that taking baths with Epsom salt would be beneficial since Epsom is so good for arthritic pain.  The caveat is that all that salt is not necessarily great for septic systems so I used this technique when my body really needed.  The idea that these tanks have 1200 lbs. of Epsom salt make them wonderful for pain in general, back pain, neck pain, joint pain, muscle soreness and other types of pain.

I did some research and found a place near my home to try out a tank.  They have pods or a room. Last night was my first visit but won’t be my last.  I was in a pod and will try a room next time.  My experience starts with a lovely couple at the front desk that are more than welcoming and really take time with me since this is my first visit.  There is a short video you watch and waiver to sign.  They explain to me that I can choose a light color and music track.  I have also thought that you enter these things in the pitch black and complete silence. They explain that I can turn this all off but for the first visit I may want light, music, or both. They take me to my room and inside the room is a shower, pod and filtration system.  They explain that I will need to shower first to ensure that I do not have any makeup, location, perfume or anything else on my body or hair and the I climb into the pod.

There is a huge lid that I closed when I climb in and the pod is big enough to sit up in so it is not like a tanning bed which I originally had thought.  I pull the lid down and lie back. I instantly start to float and try to relax. My body did not relax at first and felt my neck and back tighten up as though I had to keep myself a float instead of just letting go and letting the water hold me.  If you have ever tried to totally relax in a savanssana yoga pose it is very difficult and this was too.  I turned off the light and music and realize it was pitch black and completely silent.  I got a little un-easy so I turned on the music but left the light off.  You are in there for 90 minutes but obviously you have no idea how long you have been in there until the voice tells you that your float is complete. I did eventually start to relax and even dosed off for a brief moment but I don’t think I could actually sleep in the pod.  At some moment in my float my body felt cold and I got distracted so I tried to warm back up but instead decided to cut my float short and jump in the hot shower.  I turned back on my light and sat up in the pod. I did some stretches then climbed out to a hot shower. As it turns out I only cut my float short by 5 minutes so for 85 minutes things were comfortable and relaxing.

I explained to the couple that I got cold and they said they would make a note on my account for a little warmer water and also suggested that I try the room next time since it stays a little warmer naturally.  Also, I’ll be careful next time to not take a warm shower but try and endure a cold shower so the water will feel warmer as well.  My body runs cold and with my Raynaud’s I really don’t like feeling cold, but I did like the experience enough to try it again and see how I do.

When I went in my hips and lower back were very sore. I have been limping just slightly due to hip pain I have encountered since our move. I think hauling heavy boxes, walking lots of stairs and not being able to really rest and relax have caused my body pain and fatigue.  When I left the float place my body felt great and I slept really well.  I woke up this morning feeling really good as well, and then headed out for my walk. By the time I had finished my walk, my hips were hurting again and I had that slight limp.  I need to watch this and try and fix it and just perhaps floating, massage, yoga and general rest are just what I need.

 

THIS THING CALLED LIFE

I realized last night that it has been an entire month since I sent out a blog post and honestly last night was the first time I even thought about it.  This crazy thing called life has gotten in the way.  I don’t mean this in a negative way because even when things are good, life can get in the way.  My husband and I are making a move after 17 years and you just realize how much work is involved.  My body and mind are not able to rest even for a minute these days but because there is always so much to think about, to do, to discuss and to re-evaluate.

This morning was my first time back to weight training in over a month and half.  I figured I was getting my weight training from packing boxes and moving them to storage, but this morning I was reminded that when you don’t use your muscles they will fatigue incredibly quickly.  It won’t take long for the muscle memory to return and I feel strong again and honestly I haven’t run into any boxes I couldn’t lift and haul so I think my strength is there I’m just using it differently.  I also decreased my prednisone to 4.5mg about 3 weeks ago. I wasn’t sure if with the extra fatigue and stress my body would allow the switch from 5 to 4.5 but I can say that things are going pretty well with.  My doctor wanted me to start to ween off since I have been on the Cellcept now for 3 months.  He is hurrying me to get off of it but I figured I would try a small dose reduction and try another one after we move if my body feels ready.

I did some meditating this morning for the first time since we started this whole life change back in April.  Everyone says that this is the time to meditate the most but I was feeling like things had to give, I had to give up many things and that was one of them. I also started walking every morning to conserve some energy to get me through my work days and do yoga whenever I’m teaching but I don’t have my own practice right now. We are about 2 weeks from moving in our new home, starting our new life and making new memories in a new place and I’m hoping that once we get moved in and settled we will find that tranquility life I crave.  I wouldn’t change what is happening right now in our lives I just wish we were at the end of this journey.  Every journey has its struggles and challenges and also its joyous events but all these things cause stress and as we know stress is my biggest trigger and usually the biggest trigger for most of us with autoimmune diseases.  I am at 62 days without a flare today and feeling really good about that.  My husband is constantly reminding me to breath and rest but my hope is to finally find some real sleep in my very near future.

I am too close to the situation to see when I really need to take a breath and relax . I give people advice all the time but it is very hard to take my own advice.  My plan for the next couple of weeks is to get back to my regular routine, walking, my personal yoga practice, weight training and meditation so this morning I was able to get my weight training session and meditation session in. That felt really good.

UPDATE FROM DOCTOR

As some of you have read previously I have started Cellcept, a new medication for MCTD and Lupus to help change the course of the disease instead of dealing with individual symptoms.  I have been on it now for 8 weeks and I feel pretty good. Other than my flare at day 300 my body feels strong.  I am dealing with some life stuff so I am feeling more tired than normal but my body feels good and my exercise routine is normal.  As I was talking with my doctor he kept referring to my Lupus and for 13 years I have always considered myself to have MCTD.  Over the years I have done extensive research on both MCTD and Lupus.  My symptoms fall more in the MCTD range but apparently my blood work indicates more of a Lupus profile.  My internal organs are not affected as of right now and I do not have any skin rashes, lesions, or discoloration.  I do have severe Raynauds and my fingers continue to be thick, puffy, and swollen every day.  My joints feel ok and I take extra care with my small joints in weight training and yoga.  I do have an indicator for Polymyositis.  This is the first reading that has ever come back high for me and it does cause me some concern. Polymyositis is a rare inflammatory disease that causes muscle weakness.  Although there is no cure for this disease there are treatments for managing it.  Usually in the form of medication or physical therapy.  My plan is to have a few more tests done stretched over 12 months so I have several readings at different times in my life and decide if this is something to be concerned with or was this a fluke or is there something else going on.  Either way I am not in denial but I want to make sure I understand what my body is telling me.  I enjoy physical therapy very much but decided to stop going nearly a year ago and perhaps that is a beneficial part of my management.  I also have not had time to meet with my trainer so I believe there are things I can do and try before any medication is introduced into my routine. I am not opposed to medications but only when I have exhausted all other options.

This news has caused concern for my husband and rightly so, but I have not felt that same concern. I do have feelings of the unknown but let’s be honest when anyone is dealing with any disease, illness or issue every day is unknown.  I am vigilant about my health and that won’t change it just means I need to do new research, figure out what Polymyositis means to me and do I really have it.