Monthly Archives: July 2011


            Is it more important to have strength or flexibility? This is the question most people ask and depending on who you ask the answer will be very different. I bring this up because I had this very conversation with my trainer this morning.  Everyone is different and I can only speak for myself.  We had a nice chat about how the flexibility is good for keep me loose and helping with my balance but the strength training is going to help keep my bones, muscles, posture, and overall health better in the long run.  I need both yoga (flexibility) and weight training to maintain good health. 

            He asked how my Bikram was going and I told him I was struggling with fatigue and the heat. He was not surprised at all.  Any exercise is going to cause fatigue and especially in high heat situations just the heat alone is draining never mind adding exercise into the mix.  He said he actually asked some of his clients not to exercise last week when we were hitting record temperature days of 100 degrees and higher.  I told him I was still exercising but doing it early in the morning and I too stayed out of the heated Bikram studio those days just because heat is heat and if I spend 90 min at 105-108 and come outside into 100 when would my body get the rest it needed.  As well, I was having a hard time keeping enough fluid in my system.  He saw a lot of people at the gym struggling with fluid.

            We think that if we are in the A/C exercising and drinking water everything is ok but we need way more fluid on those types of days and the A/C helps but is not a preventative for heat exhaustion.

            I got off of track a little, the main idea is do our bodies function better being limber and flexible or strong?  I think both; I believe I need a good balance of each to be successful managing my MCTD.  He did say he didn’t think I could get the same strength exercises I needed from yoga although I do feel fatigued after yoga but to really work my back muscles I need to be pulling and there is no pulling in yoga.  He said even doing body weight exercises is hard when trying to strengthen the upper back area because you can’t really pull your own weight without something to assist you. 

            We went through a vigorous routine this morning and he added more weight to my routine and said that by adding weight if I needed to decrease reps than that was ok and even good because it meant my body would feel the effects of the higher weight more than the number of reps. I was so tired at the end but felt so strong.  He is really impressed with how far I have come and is amazed when I tell him I’m dealing with fatigue because he just doesn’t see it in me.  I feel it but I guess I don’t project it which is exactly what I want. I don’t want to walk around looking at tired as I feel!



            Literally every day of my life can be different.  Most people have different days but they probably don’t give much thought to how they feel or the slight differences they experience from day to day.  I cannot ignore it, unfortunately I wait until I wake up to really plan the type of day I will have.  This morning I woke up utterly exhausted and my hips hurt so badly I knew I didn’t want to participate in yoga and certainly not any cardio.  I also have a personal training session tomorrow so I must be on my “A Game” for tomorrow morning.  I say that and if I wake up stiff as a board I will still go to my training session but we will have to just discuss the limitations of MCTD. 

            There are no weather changes in the forecast, there is no more humidity then there was yesterday.  I have not changed anything that I can recall so this is just waking up to fatigue and stiffness.  Since I didn’t work out this morning it will probably take me a little longer to loosen up but I really felt like I needed the rest more than the exercise today.  In all honesty I probably need an entire day of rest to get back on track but that won’t happen until the weekend gets here.  Just a couple more days and in the meantime I will need to take it easy, pace myself and keep my stress to a very low minimum if I want to make sure I don’t go into flare. 

            Ironically I was suppose to have a doctor’s appointment today but changed it due to a meeting.  Not that the doctor would tell me anything that I don’t already know but perhaps my body is trying to tell me that my doctor appointments are more important than meetings and to recognize that.   I really didn’t have anything I needed to speak to him about this time anyways especially since I have decided not to mess with my medications and try to decrease right now. I want to be stronger before I do that and I just feel like I am doing too much teetering between strength and fatigue so now is not the time for that discussion.  I’m a pretty boring patient for my doctor to see which is ok for both of us.  The less I have to worry and the less he has to do the better all the way around.


            This morning I woke up feeling really pretty good and decided to head into the Bikram studio and I was so glad I did.  As I arrived one of my fellow yogi’s was there early and she was hoping I was coming this day so she could bounce some autoimmune things off of me.  Her sister-in-law is here in Maine visiting from NY and instantly she noticed that her sister-in-law was walking with stiff legs and her hands seemed stiff.  She told my yogi friend that her doctor thinks she has RA but has not been to a Rheumatologist yet to have it confirmed. She if feeling depressed with the pain she is suffering within the knees and hands. 

            My yogi friend said she had just the person to speak to about this, she meant me.  She said she has watched me the last year in our yoga class and that I am an inspiration to her and she just wants her sister-in-law to be able to tackle this challenge as well as I have.  I felt incredibly honored to have these compliments given my way and realized that although I have MCTD and my friend’s sister-in-law has RA so they think they are very similar and I wanted to offer my support as much as I possible.  She asked me what I would recommend for someone who is just finding out they have an autoimmune disease and instantly I said she needs a doctor she can trust.  This person and you are going to be seeing each at least 4 times a year and probably more in the beginning; you have to be able to trust them.  They are going to throw a lot of information at you and want you start taking some medications right off the bat that more than likely are going to make you feel bad.  Of course they are going to help but you may not feel good in the process.  A doctor that is willing to not only suggest but also opened to other alternative types of therapies and well as a doctor that is willing to be strong and say you need exercise and a good diet right from day one.

            Once the diagnosis comes back and you know what you are dealing with that is when you can start to control and then manage your disease.  Everyone’s level of pain is different and depending on the level of pain this woman has I suggested starting in a pool for some water aerobics and asked if her feet hurt.  When your feet are effected it is very hard to even start to think about a walking routine but if there is little pain in the feet even with major pain in the knees and hips you can walk some and start a routine.  She doesn’t have pain yet in her feet so I suggested she get a pedometer and just try to get in at least 2000 steps a day.  It is not a lot but it can feel like a ton when you don’t feel well and you are dealing with pain.  My friend is buying her a pedometer today and suggesting she just start the walking process.  The more you can move the better off you’ll be at keeping some lubrication in those knee and hip joints.  Nothing strenuous but some light walking is good. 

            I was diagnosed 8 years ago and I still wear a pedometer, because that is how I started and although it hasn’t happened in many months for me there were days right up until this year that I didn’t feel like walking and even on those types of days it is good to try to get yourself to move.  There are days that I click away 25k steps and very proud that I can do that but it has taken me many years.  Every day is a stepping stone to managing a lifelong disease.  I hope she finds the help she needs and I’m so incredibly honored to know that I’m making an impact through a friend of a friend situation.


            I was feeling kind of sluggish yesterday morning so I decided to sleep in a bit and not push myself out the door early to go to Bikram.  Instead I went up the gym very near my home to use the elliptical machine.  My trainer happened to be there at 5am training someone else and said “a little cardio this morning” yes I am shifting my focus a little bit.  I love the way I feel with Bikram but I have been so tired recently that sometimes getting in 45-60 minutes seems less tiring then the full 90 minutes and with the heat I’m even more tired after Bikram and not really able to cool down very quickly.  I’m not done with Bikram by any means but now is a good time to ease back into gym life as well as try other types of yoga.

            I have a couple of classes lined up this week that will give me different forms of yoga and hoping that helps with my fatigue.  I really need a relaxing and gentle yoga before bed in hopes that it helps me sleep soundly.  I’m just so tired and then I worry about not sleeping which just compounds the problem.  A couple of nights isn’t the problem, many nights in a row is a big problem and it takes me longer to get through my fatigue the deeper I go. 

            Now is a good time to shift my focus and just do what feels right. That might mean sleeping in and forgoing all exercise in the mornings or taking a nice walk or even using the machines at the gym.  Either way I’ll be doing what my body and mind need on any particular day and that is what keeps me in management mode.


I spent the entire weekend taking care of me and spending time with my husband as he also took care of me.  It is not easy to just allow others to help me but there are times that a little nurturing goes a long way and this was one of those weekends.  We didn’t see my nephew although my brother asked if I would watch him but I just needed some serious quiet time and took that time for myself.

The heat stuck around all weekend so my husband and I stuck close to the water.  I had such a good dunk in the water and although it was a bit cold at first it felt so good. I didn’t stay in it too long for fear of Raynaud’s
but the quick dunk was just what I needed.  We spent a lot of time talking and laughing and doing what we should be doing.  Sometimes we get caught up in everyone’s life and we forget that we are the 2 most
important people in our family. My husband can also rest easy when he knows I’m taking it easy and he needed a weekend of resting easy.

Summer comes and goes quickly and we are desperate to get as much in as possible since the season is so short but this was not one of those weekends, this was a be grateful for what we have and that we have each other and remember the love the laughter we have together when it is just the 2 of us.  We did however, start packing for our upcoming “camp vacation”  this is not camping in a tent but instead renting a house on a nearby lake, not our lake as that would not be a vacation so we do travel but then we unload the many cars that arrive with food, drinks, toys, music and people. This year we will have between 10-12 people at any
given time for the week so we need to pack a lot.  We spent most of Saturday just going through all the stuff we wanted to eat and drink while we are there.  We eat like kings and queens at camp, not that
it is all that healthy but it sure tastes good.  This will be the first time in a long time that I’m going to camp and not eating gluten free.  It will make shopping, cooking, preparing meals, and sharing food so much easier. I have always had to pack my own stuff and be careful.  This year I’ll just be fun and fancy free and just eat all the stuff that everyone else is eating too. 

This vacation is so good for us because we both get to unplug together.  Granted it isn’t quiet with all the people but the idea is quiet and the lake is quiet.  The mornings are quiet, the evenings are quiet and we get to do the thing we love most which is getting out on the lake early in the mornings and kayaking all day.  We don’t really know what happens in the rest of the world the week we are at camp but it doesn’t matter, real life is always there when we resurface back into life afterward.


    I woke up this morning and left my house at 4am, it was already 82 degrees. This is probably nothing new for many of you around the country but this is unheard of for Maine. The air was so warm and yet so thick I knew I was not going to have to worry about Raynaud’s this morning. As I was headed to gym for some cardio, and weight training I also decided I would jump in a class this morning over at the gym. However, just like life I changed my mind. I saw one of my yogi’s at the gym and she said let’s go to Bikram there won’t be that many people there since most everyone is staying away from the studio during this heat wave.

            I got to Bikram and it was hot, the heat was turned way up before the bodies even started to enter the studio.  There turned out to be about 30 of us that were all thinking the same thing that not that many people would be there on a day as hot as this.  Well the bodies started to pile in and the humidity and temperature went up and went up fast.  I actually laughed to myself and just decided to enjoy this practice as much as possible and I wouldn’t worry if I was still hot and sweaty after class I would just sit in my a/c car for a while cooling down and feeling the effects of Raynaud’s with the a/c.  That is the problem with me and a/c is that I don’t have to be in it but a minute and I’m in full blown Raynaud’s with purple fingers. 

            I actually had a really great practice.  The people that were there were all the regulars that exude incredible focus and energy and I just fed off of that energy.  My postures were so balanced and strong probably because my body was so warm it was willing to be twisted into any posture I put it in.  I also hadn’t been to Bikram much this week due to the heat so it felt good to be back in there.  I didn’t want to push it too much since I haven’t been feeling like myself but once I was in it I was pushing through it and watching myself do incredible things.  I do enjoy seeing my body make the changes and strides in healthy ways and thankful that my body is even able to perform like this.  The heat is on and as much as I love this I know a lot of people don’t.  My husband would prefer it not be so hot but he knows I would take this any day over cold.


Nothing like the sound of snap, crackle and pop first thing in the morning. As I climb out of bed I have been feeling my lower body, especially my knees and ankles cracking as my body starts to wake up. This doesn’t happen every morning but it certainly happens on those mornings where there is a threat of a thunderstorm or high humidity. The weather could turn at any moment and my body acts as a barometer and things are a bit stiffer.

My hands tend to be stiffer on mornings like this as well. The difference is that my lower body will loosen up pretty quickly where as my hands can stay stiff all day if there is a lot of moisture in the air. I read in my one of Ayurveda books that taking 2 Tbsp of flax seed oil daily can actually lubricate the joints. It comes as no surprise to anyone that I in fact bought flax seed and I’m trying it. If it works I’m all for it. The problem is I never know how to long to try something before I decide if it is working or not. Sometimes I just have to have faith that things are working and that I’m getting the benefits even if I don’t feel effects right away. Honestly the taste of the flax seed oil is pretty good. You can certainly add it to foods if you don’t like just taking it by spoon but I don’t mind drinking down 2 Tbsp quickly and getting it right into my system. I need some lubrication and willing to try this at least for a while.