STUDENT PANEL

This post will lead to more posts coming in the near future and although I have so much to write I will try and keep it simple and to the most exciting details.  I was invited to our local college to meet with 180 medical students, who may or may not end up following a path into Rheumatology but either way they will be in the medical field in some capacity.  I was 1 of 10 patients with an autoimmune disease.  A couple of us were considered rare, a few would have visible clues, a few would be considered more common with or without visible clues.  Each patient sat a table with 9 students. The students could ask us any questions about our situation but could not ask what we had. They could ask for lab results and could do examinations, but they only had 10 minutes.  It was really interesting to hear the questions that they would ask, and also how quickly they were willing to make a diagnosis, but would be wrong.  I was having a rather bad Raynaud’s day so they all looked at my hands and feet and could tell immediately the issue there, but they had to decipher if it was a primary or secondary disease.  Mine is secondary.

The students could ask me what medications I take and when.  I learned very quickly that I only know my medications by their long names and students only know the medication by the generic chemical name.  The obvious one that we all knew by its original name was prednisone. I was able to tell them what the medication was intended for and then let them know that some had made their way into the Rheumatology realm over time.  Such as, Cellcept is actually a medication given to organ transplant patients to help them accept the new organ easier.  That wouldn’t make much sense to a student unless you also knew that it was an immune suppressant.  Plaquenil was first design to help with Malaria but has been used in autoimmune cases since the late 70’s.  There are all kinds of names for calcium blockers but not all calcium blockers are used for high blood pressure.  I was able to educate for a few hours and tell my story in the hopes that these future doctors made good decisions for their complicated future patients.

After a 4 hours and 180 students asked me questions, looked at my hands and feet and made their own diagnosis only 2 students were correct in diagnosing me with MCTD.  Many had never even heard of MCTD and lucky for them the next week’s curriculum was going to be about Lupus, Scleroderma, and MCTD.  Some of the patients’ diseases they were able to come up easily and quickly but they were cautioned to not make a quick decision because some autoimmune look like one thing but are really something else and many times patients get bounced from doctor to doctor trying to come up with the best plan of action when they haven’t even been diagnosed correctly.

The students were told of patient’s stories where they spent years going to different doctors trying to figure it out and spent years and years just taking care of symptoms instead of the root cause disease.  I was able to explain that the Rheumatologist I was sent to spent a lot of time with me and diagnosed me fairly quickly but that it was the years spent after working together to manage the disease.  I also know that I was extremely blessed and this is not the norm for many people suffering from autoimmune but if our future doctors are willing to take a little extra time to get it right then the managing can start a lot sooner which benefits everyone.

It was such a great experience.  I hope to be asked back again and since the next time I will know what to expect I hope that my information will be even more helpful to the students. I did have a few students comment that they were impressed with how well I was able to answer questions and give descriptive information about my pain, condition and side effects of medications.  That I believe comes with practice.

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WINTER BLUES

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.

BACK TO ZERO DAYS

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.

HAPPY NEW YEAR

I woke up this morning and realized I’m at 225 days without a flare so this is a great start to the new year. We don’t have to wait until New Year’s Day to make changes in our lives or set goals but it seems easier to do so when it seems the slate has been cleaned and the new year ahead is full of opportunities. I started my day by teaching a yoga class and I started by saying I think we should ease into the new year and what I heard back was no bring it. Most people are tired New Year’s Day, most people haven’t been sleeping enough, eating out of the ordinary, drinking more than they normally would and we should probably all let our bodies rest but instead we wake up on the first day of the new year and want to be challenged. Whether in a spin class, a new facebook challenge, or even a yoga class. We want that push to get us started in the new year right. We all look for this, but what is the drive? I don’t have the answer to this question as I’m still trying to figure out what drives me to do all I do, and try all the things I try. The people around me wonder where my energy comes from, where my drive comes from and what my boundary is. The only thing I know for certain is that I do as much as I can on days that I feel good because it isn’t every day that my body is running at 85% and never at 100% these days, but I do what I do because I can. If you have been with me since the beginning there was a time when I couldn’t walk and with therapy walking 2000 steps a day was a chore and took all day, now I hit 10,000 steps usually by noon, because my legs work, because my body functions. I do hours of yoga because I have the strength in my arms, elbows and wrists. I do what I do because I have worked to get here and part of me is afraid it could be taken away at any moment. I live in the now as best as I can, but there is a lingering fear that my body could and probably will some day long from now not do what it does today. I believe I will always be able to walk and I will always be able to do yoga. That is where I put my focus, but I’m crazy about spinning. I’m crazy about trying new things, and I’m crazy about succeeding.

I don’t know what this New Year will bring, but I am open to all the events that come my way. I know I will not like everything that I’m faced with this year, but I will face anything with calm, peace and grace. I will continue to encourage all of my yoga students to do the same and challenge them as they need and let them rest when they must without judgment. Happy New Year to you all and hope your year brings you health, happiness, and peace and may this year bring you everything you need.

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.

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.