Category Archives: Getting Involved

AMAZING ACHIEVEMENTS

I am fortunate that I am still amazed by my body and I don’t say this in an arrogant or conceited way but really in an amazement way. Since the day I woke up in May of 2003 and literally couldn’t walk I have grown stronger, more dedicated to my health and wellbeing and pushed my body to incredible limits when I could. I would also struggle a lot with “I can’t do that” moments when the truth was I didn’t know if I could or couldn’t. It was a defense mechanism that I used because my body has failed me many times in the past and I didn’t feel confident in it. I would amaze myself with different challenges and goals but in the back of my mind I always had this unsettled feeling that my body would once again fail me and unfortunately it did in the form of flares. I would have my flare, move on, and start back at base-line, and work my way back up until my next flare always wondering when that flare might come. Never really believing it won’t come. I still don’t believe it won’t come and although I don’t prepare so much for the flare I’m just more open to it coming and going.

As many of you have read I’m truly focused on my yoga and practice hours upon hours a week. I’m working on my teacher training, I’m also just working toward yoga for life but most recently I’m working toward a yogathon which takes place this Sunday at Gillette Stadium (Our NE Patriots Football home) and I will be doing yoga all day. I love the aspect of doing yoga all day and have not worried once about whether my body would hold up until about a week ago when during a long session of yoga my shoulders got incredibly fatigued from chaturanga dandasana and I got that aching feeling as to whether my body was once again going to fail me.

Since I have started a daily meditation practice I have been using my meditation as a way to make peace with my body and let go of some of these uncertain feelings I have and be proud of the body I have. This week I have literally done back to back sessions of yoga and increased my hours upon hours to (hours, upon hours, upon hours) of yoga this week getting ready and training for Sunday. I woke up this morning thinking my body truly rocks. I am truly proud of what I have put this body through for the last 44 days training for this yogathon and so very much looking forward to how it performs on Sunday. I’m proud that it is strong and that my conditioning is good. In my meditation I allow myself to have thoughts of flare and then I disconnect from those thoughts. Meditation is not about stopping the thoughts but letting them come and go and disconnecting from them.

I still don’t know what the future holds for this body of mine and living with MCTD but I do feel very capable and able to ask it to do things that would otherwise scare me. I’m nervous for Sunday, rightfully so, but for other reasons. The crowd, the unknown, the weather, and lower on the list is whether my body will hold up. I will be doing a follow up to describe my experience and how it all went and in the mean time I still have 2 more days of training before the big day and thankful for the achievement of strength.

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TIS THE SEASON FOR STRESS

First things first, here are my weekly Fitbit stats.

Total steps week = 88,338

Average daily steps = 12,620

Miles walked = 33.78

Average number of floors climbed = 130

On with the stress. Everyone looks forward to spending the holidays with loved ones, sharing food, laughing over drinks, spreading the cheer and engaging in the stories but when we are out and about it seems as though everyone is stressed.  More than just stressed they also seem incredibly tired and completely worn thin.  This is the season when we do way too much and somehow completely forget how to say no.  I bring this up because for the readers with MCTD you only have so much energy to give on any particular day so finding extra energy can be really difficult.  I know from experience that it is very hard to say no to one more get together, one more fire side chat, one more “this is really important” dinner with either friends or family and one more “I could really use your help shopping” so give yourself permission to say no.

No one wants to disappoint people on any given day but certainly no one wants to disappoint our loved ones during this season.  They have been there for you and helped you through some really challenging, scary, tough times so you feel as though you want to thank them and by doing so you end up doing too much.  Remember these very people that were there during your challenging times also realize that your bodies run out of energy very quickly and not putting yourself first could end you up very tired or even in bed with a flare.

I’m not saying use your MCTD as an excuse, but I do think that putting yourself above all others for a few moments each day to assess how are you feeling on this day, what kind of energy do you have, how much do you really have to do and how much can you actually do are very important questions to ask.

I have been living with and managing MCTD for 11 years and still after all this time I have to pick and choose the important times and yes there are times when I run myself into the ground but getting back up takes me a little bit longer so there are consequences for those actions.  My family is the last group of people who want to see me stressed, over tired and just making it through the day so they are also the first ones to give me the break of not participating and staying home to rest.  The rest of the world doesn’t even see me with an illness most of the time so when I tell them no I see the perplexed looked on their faces but I have nothing to explain or defend.

Getting to a place in your life when you can truly own your decisions and feel good about the decisions you make is unbelievable and it didn’t come to me over night. It came to with each flare and each recovery.  Although my base line is different and my endurance is better I still feel fatigue and when I do I have no one to blame but myself for not reading the signs and listening to my body the way I should.  I am going to get through this season, all the crazy hours, eating, drinking, song singing flare-up free but only because I have found my active listening skills and really worked to listen to my body and know when it is time to say No.  We believe we may miss something, but if you are in bed with a flare you are 100% certain to miss something.  Keep yourself well, forgive yourself if you over-do it and send yourself compassion if you do flare.  With each flare and recovery you will find the skills needed to read the signs and react in a way that helps your body.

The season is supposed to be fun so try to keep the stress of it down to a low roar.  Happy Holidays.

TOUR DE CURE 2014

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Today not only am I celebrating 341 days without a flare but also that I rode and finished the 50K Tour DE Cure this morning with my step-father. This ride was to benefit Diabetes which I don’t have but finding cures for other autoimmune diseases will only help in some day finding a cure for MCTD as well.

 

Speaking of benefits I received tremendous benefit from this ride. I went from never riding a bike to deciding to participate in this cause. I first started with spinning classes all winter long and in the spring bought myself my first bike ever. I chose a road bike for the simple fact that I had to ride about 33 miles and wanted to do it quickly. There are certainly bikes out there more comfortable then a road bike but why prolong the ride by making it feel longer than it needs to be. The road bike I bought was perfect for me and I just started training. Greg and I rode a few Saturdays together and he was a wonderful coach. He stayed right with me the whole ride today and was such a great supporter. It was really fun. My husband, Matthew and mom were at the start and finish line to watch us go and especially to watch us come back.

 

We lined up with 700 other riders but put a little space between us since I’m still getting use to getting and out of my baskets. I’m not ready for cycling shoes just yet but maybe for the next race or ride I’ll be ready. They gave the start off and we were off and running or in this case cycling. The take off went well and all we were all bunched up everyone was careful and no falls, crashes, or wipe outs. The ride was incredibly beautiful all along the ocean coast and the sea breeze felt so good on our faces. It was 86 degrees here and for Maine that is hot and unheard of. I loved it. On mile 7 there was a rest stop but we didn’t need anything but a picture so we took one quick and got back on the road. At that rest stop is when things started to space out. There were several miles where it was just us and no one in front of us or behind us. There was a mandatory rest at mile 16 to let them know you were still on course that we took a minute and got back on road. By mile 27 I was feeling very much like I needed to get off my bike but we were almost there.

 

We saw the 4 miles left sign and I knew I was going to make it. 3 miles and I’m feeling like now is the time to stretch my legs and try to get feeling back in my hands. I had lost feeling about mile 11 but with Raynaud’s that is to be expected. 2 miles left and now I’m getting so anxious and then I see it 1 mile left and we are home free. Greg says look good going in so keep some juice in the tank. As though I have any juice left that I might be able to reserve, but I knew what he meant. We head up the last hill of the day and the people are cheering us on and I see Matthew and mom standing there and I just smiled so big I couldn’t believe it I crossed in 2 hours and 24 minutes. Very respectable I do believe and I’m happy with it.

 

We climbed off our bikes and headed for medals and water and oh yes lunch. We laughed, hugged, high five, ate, hugged some more and felt very accomplished with what we had just done together. It was so great and I’m glad it is done and can be marked off my list. They are already talking about next year but I’m still thinking and enjoying this year. 

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84 Asanas

It has been a while since I have written a post, so I do have some catching up to do and will try to be better about more regular posts. Life is something that just gets in the way sometimes and that seems to be happening to me right now.  However, with that said I am 223 days without a flare as of today and I couldn’t be happier about. I don’t know exactly what is helping and what the real cause of my many flare-up free days are based on but I do know that I am feeling strong, energized, and capable of much more now than ever before. I’m taking advantage of this new found energy and trying some new things.

I participated in a 2 hour 84 Asana class that went through the Bikram poses but also added some sequence flows and advanced postures. It was incredibly fun and showed me how far I have come with my yoga practice.  I enjoy the sequence and flow very much but really enjoy the power of balance in the Bikram postures. I also enjoy the stretching and concentration of the Bikram practice but adding a few sequence flows really gave it a pumped up energy that was good for the joints and the soul.

I have also signed up to ride in the Tour de Cure this year and although I have never been a bike rider and really I’m not very good on a bike I feel like I want to do this ride to help find a cure for diabetes. Honestly I would never get off a bike if they could find a cure for MCTD, cancer, diabetes and other autoimmune diseases but if we can make a connection somewhere then science might lend it to curing all kinds of diseases.  I recently just learned about prednisone induced diabetes and I found myself feeling very frustrated because I have been taking this medication for 10 years and I didn’t know anything about it.  In all fairness 10 years ago if someone told me about it I might have heard it but clearly didn’t process it.  However, over the last 10 years I have become an amateur medical student for myself and this has never popped up for me and I come across a lot of information in a day, week, month and even year.  I’m so surprised that I haven’t heard about this and now I wonder what it really means and how it is diagnosed.  As you can imagine I have a new focus and now that I know this is possible I want all the information I can get on this subject.

I have been fortunate enough to not have diabetes enter my life but how much prednisone does it take to induce diabetes? I don’t know but I will find out. I am riding for a specific cause but I’m also riding for people, people I love, people that have diseases, people that have watched me struggle at times in my life but now get to see ride a bike for 50 miles.  I won’t promise to be graceful but I do promise to finish. Part of the winter training is spinning inside and how I love spinning.  Over the years I have been afraid to spin and ride a bike but today I’m much stronger than I have been in the past and ready to climb out of my comfort zone and find fun in life outside the gym.

I am still doing my Insanity Class 3 days a week and meeting with my trainer for weight training so the gym life is not over for me but being able to try new things is really liberating.  I recognize my active life is not for everyone and my husband and I need something to do together so we have recently started taking golf lessons.  This is a way for us to be together, I get to stay active, he gets to incorporate some activity and we get to support each other in a new area for both of us. Its times like this I’m as thankful for this new found energy as I don’t think I could keep up with myself otherwise.

 

A DAY AT THE FAIR

 

P1000027 Yesterday we said good-bye to summer and hello autumn.  Although I was most disappointed to see summer go this is all part of life and so as a way to celebrate the arrival of autumn we went to Maine’s largest farmer’s market.  We call it the Commonground Fair in Unity ME and it brings farmers from all over to share their offerings and experience with the common folk.  We are the common folk but there is something very sweet about eating produce and vegetable that were grown and cared for by the very farmers standing in front of you most impressed with their own work.

Now do not get me wrong, this is a fair with everything fairs have to offer except no rides, but there is fried dough, lemon slushies, and treats absolutely everywhere.  However, they also have grass fed organic meats, cheeses, dairy, and made with love pies and ice cream.  We knew we didn’t want to spend our time in the food area so we had packed snacks to tide us over as we walked through the farmer’s markets, the cattle area, poultry and backyard chicken area, some of my favorite places; the sheep, goats, alpaca, and donkeys.  I honestly don’t know if the picture I posted was a mule or donkey but I do know her name is Lily and she is very much loved.

I had a moment of romanticism or maybe it was insanity but I started to think that I could be a homesteader.  My husband in a very loving way laughed and said it isn’t romantic at all and how about we start with a garden.  I believe after many conversations on our way home that I truly am not cut out of homesteading right now but I’ll start with a garden and see how I do.  I did try a garden a few years ago but I guess I didn’t realize I actually had to do anything with it so as you can imagine I had the best fed deer, chipmunks and squirrels in all of Maine.

There really is something romantic about the thought of living on a farm, heading out every morning for first fresh air and saying hello to all your animals. Eating foods right from the farm and sharing those foods with others.  Perhaps just a dream for many of us, but also a true reality for those very people working so hard to provide us wonderful foods not just one weekend a year at the fair but every day.

AUTUMN FAIR

When living in Maine, what do you do on a beautiful fall day in September? Go to a fair, but of course.  That is exactly what we did today. The morning started out wet and foggy but we were not going to turn back, instead we started out extremely early for our nearly 2 hour drive.  We were on our way to the Common Ground Fair which is an organic farmers community fair.  I have never been before but so I excited to go.

When we arrived the gates were just opening so we found a nice place to park and headed for the gate.  The walk to the fair ground was like a nice Sunday morning hike in the woods.  Along the way there were signs about low impact forestry, types of wood, how to detect dry wood, green wood, and other types.  There were composting signs along this trail as well that 90% of everything at the fair was able to be put in compost. We walked along this trail in the woods waiting for the fair to appear.  Once it did it was not your typical fair.  We bought our tickets and immediately were ushered into the farmers market.  I was like a little kid seeing all the stands, wondering what we should buy, discussing should we get it now or on our way out.  The cattle farmers were there and the poultry farmers were there.  We even saw organic, grass fed pork and couldn’t wait to taste the deliciousness of this fresh farmed meat.

After we got our program we decided we wanted to see the demonstrations and would consider our buying needs later.  The first demonstration we attended was the goat milking.  I might be from Nebraska but I have never seen any animal milked and yes I found this fascinating.  The farmer was talking gently to the goat and she didn’t seem to mind that all these different hands were on her taking the milk that her body produces.  She didn’t seem anxious but rather relieved.  After spending some time there we were off to see the horse show.  We had arrived for the working horses.  These mammoth animals were beautiful and intimidating but were also very calm.  Some were talking to each other and since neither my husband nor I speak horse we made up the stories we believed they were telling.  The handlers ranged in ages of young teens to older much more experienced season men and women. The differences between the handlers was just as interesting as the differences in all the horses.  We learned about Belgian work horses and Perchons work horses.  We actually spent a lot of time with the horses. I think we enjoyed their energy.

Soon after the horse show we went over to the Border Collie demonstration and these experienced dogs were something to watch.  The way they obeyed commands and herded the sheep and goats and yes even ducks. They like to work and it showed in the way they were entertaining the crowd as well as pleasing the farmer at the same time.  We watched them with great glee.  Moving on after the Borders we entered the beer brewing demonstration.  This fair literally has something for everyone and as you walk from demonstration to demonstration you are on scenery overload with all the potential things you can buy and questions you can ask as you enter tents of your choice.  We went into mushroom tents, and herbal tents and beer brewing tents.  If this sounds like a hippy fair you would be absolutely correct but it was just what we were looking for.

So after already spending hours walking and looking and watching what do two Paleo wannabe dieters eat at the fair? We certainly weren’t interested in fried dough or anything that came in a wrap but since this is an organic fair we had wonderful pick of organic meats and chose skewers.  We got a plate of skewers, found a little bench to share and eat our lunch.  My husband looked at me and made reference to sharing a plate of food with our hands was certainly very primal. He could not have been more right.  No need to sanitize it was time to eat and enjoy and that is exactly what we did.

Many more hours later we finally decide our feet have had enough and back to the farmers market we head to do our final shopping and climb back into the car for our 2 hour trip home feeling very satisfied,  a little more educated, extremely exhausted, and ready to talk about all we did and saw for the day.  If there was ever a fair for us to attend this was it and we are already planning our trip for next year and how we’ll lay out the day a little better and try to condense our walking to ensure we see what we want but not walk in circles looking for things.  Every state has their fall fairs and it really is fun to head out for the day and just enjoy what the fairs have to offer.

LETTING THE EGO GO

I don’t post pictures very often but there is something special about seeing a bunch of people doing yoga together.  Granted this is not our best sides but it is a pose I spent many of the 5 hours in.  Downward facing dog, not my favorite pose even though it is considered a “resting posture” do we look like we are resting?  I consider savassanna my resting pose.

            During the last half hour of the yogathon we did a shaking meditation. I have never done one before but it is exactly what it says.  You just get inside yourself and shake.  Standing in the middle of the Maine Mall we had to let the egos go and just have fun. At one point I heard some woman say “Oh its zumba” that made me laugh and just reminded me not to take myself too seriously.

            The more I’m doing yoga and meeting some really wonderful, down to earth people the more I realize there is no reason to hold on to vanity, insecurity, or uncertainty.  I’m a strong and if I might even add beautiful woman who is learning to be herself in all situations and really enjoying who she is. I found this to be especially true today when I went to hot yoga at lunch time.  It was incredibly hot in there and the room was packed. I was gaining strength from all these high energy people around me and really just giving it all I had.  No holding back, didn’t care I was there on my lunch break and would be returning work, didn’t bother me that I was making everything around me extremely wet, I was in the moment and I was doing great. 

            I have exactly an hour at lunch time so I fly back to work and realize I’m drenched.  Not a little sweaty but soaked all the way through.  I don’t have any meetings this afternoon so I return to my office to catch my breath, cool down and take a minute before getting cleaned up.  You would have thought the people I worked with have never been a sweaty mess before.  Maybe they haven’t but I find it very refreshing, re-energizing, detoxifying and I’m secure in my sweating.  I had to let the ego go and just say this is who I am.  I am a woman that needs to get her sweat on and feels just fine doing it.  Actually, I feel better then fine I feel great.  That is also why I can post the picture of me in downward facing dog, oh and also because you don’t know which one is me!!!!!