Monthly Archives: May 2011


Yesterday Mother Nature decided that summer was really here.  It was 78 degrees by the time I stepped out of the gym at 9am and I knew that it was going to be a perfect day for kayaking.  I rushed home to tell my husband we had to load up before everyone woke and decided the same thing.  We take kayaks out on the lake so we can relax and enjoy nature, however many people take big motor boats out and although I don’t begrudge them their fun I do find their loud motors a bit distracting.  Also, since it is harder to see us they tend to fly by us at high speeds which makes me nervous.

We loaded up the kayaks and I grabbed my book, water and snacks and off we went. Did you notice I didn’t say suntan lotion.  I completely forgot about it and I don’t know if I wasn’t thinking in terms of bright sun and sunburns or if I unconsciously thought my Lilly white skin could use some color or what happened but today I look like a lobster’s sister.  My skin is screaming and cursing at me and I feel like I really did damage to it.

Back to the good stuff, we got to the lake which is very close to our house and a carry in only place so we parked and took our kayaks down to the water.  We have the Hobie which have a drive shaft so you actually use your feet to pedal instead of your arms to paddle. This way our hands are free for fishing, reading, whatever we need to do.  They are also very sturdy so we can stand for brief periods of time which I need to
stretch out my lower back, knees, and hips.  We can carry coolers of water, food, or my husband’s favorite, fish bait.  The day is ours to do what we want.  My favorite time is after he has had a chance to go
off and fish a bit while I meander behind him reading and enjoying the air he will come back and tether up our kayaks so we are actually attached.  He calls it our “flotilla” and we talk about anything and everything.  Sometimes our conversations are about serious life things and other times they are about meaningless things but they are our conversations and  I love having them. 

We spent a few hours out there and since our kayaks don’t look like everyone else’s we do get stopped a lot and asked questions.  Whether we are getting in the water, off the water or on the water.  They are nice enough not to bother my husband when he is deep in fishing mode.  It is a type of religion or spiritual moment for him being out in nature and spending time on the water.  He is very careful with the fish and always throws them back.  My husband loves to be nature and I love to be with him in his tranquil element.



A few months back I was doing some research on the internet looking for books that were about MCTD.  I periodically do this so I can see what is out there and since most of the books on the shelves have dates of 1999-2003 there has been a lot of changes and new opinions so I’m always looking for new books on this subject.  As I was looking I ran across a book called “Walking Nature Home” by Susan J Tweit.  This woman’s
journey living with MCTD.  I do not run across books written about people with MCTD, sure there are examples in the books I read about real people with MCTD usually telling me that their symptoms went
completely away when they stopped eating tomatoes or root vegetables. Not exactly what I’m looking for since I don’t believe that I can change my blood work by not eating certain things.  Well I didn’t believe it until I read this book.

She was diagnosed in the 80’s and since MCTD was given its name in 1972 not much time had gone by so her stories with her doctors are amazing, sad, made me angry and honestly made me laugh.  As she deals with her disease I was intrigued, confused, impressed, and even envious.  She is a good writer and I wanted to see what the next chapter of her life brought. I highly recommend this book and since I found it my library I hope it is at yours too.  Any books worth keeping are worth buying but many of the books I read I get from the library since I read 4 or more a month.  This is not a keep on your shelf type of book but it does lend some insight as to where this disease started, where we are now and perhaps where we can go from here.

I was diagnosed in 2003 without hesitation they knew exactly what I had and I didn’t have to wait years to find out that I had an autoimmune disease sometimes I’m thankful that I am living now and getting the treatment I need to manage this.  In the 70’s and 80’s it was still to new and I’m sure woman felt terrible and felt like they were going insane because many doctors told them they were.  Times have changed and still changing.  Hopefully in the next decade we will make even more strides towards managing this disease and perhaps even finding ways of remission for it. 

That is what I was most intrigued about with this book is her “remissions” I wont’ say too much as to not spoil it but it was fascinating.


I love the 3 “H”’s and will take hazy hot and humid any day.  I spend so much time in the winter complaining about being cold and not being able to feel my fingers that I wait for the days when it is so sticky outside that
just walking to the mailbox makes me warm and sweaty.  The hotter the better for me and I honestly mean that.  I don’t use any air conditioning in my car or my home, although we really don’t need it in Maine but believe it or not on the news they are telling people to get the A/C units out for Monday since we will hit a whopping 89 degrees.

I will be outside in my kayak with my book reading and enjoying the fact that as long as my hands don’t get wet I shouldn’t have Raynaud’s.  This time of year I can back off of my Niacin, procardia and even fish oil but I may just keep the fish oil as a daily supplement since it has such good benefits other than helping with Raynaud’s.  My hands enjoy the fact that they don’t deal with discoloration or numbness but when the heat
comes the swelling comes.  No way around it for me, as soon as the humidity is in the air my already extremely swollen fingers get bigger.  I won’t complain about the heat and the humidity since the
rest of the my body is much happier with the heat but my hands are so swollen some days that I don’t wear rings and can barely make fists.  In the winter time they are swollen but not as swollen, the heat just
makes my sausage fingers expand.  Take the good with the bad and in the long run for my health, sanity, and just the fact I can be outside I’ll take hazy, hot and humid any day.


I’m blogging at the end of the day because I just had the perfect day today and wanted to share.  I woke up very early, earlier then normal and started by getting stuff done around the house.  As I walked into the gym when they opened a couple of people asked if I was going to take classes today.  My response was no that I wasn’t going to be here long since I was spending the day with my nephew.

I love having play dates and over night sleep overs with him.  He is still too young to really understand the relationship that is forming between us but when I have him all day at my house and he is napping here that means he is comfortable enough to fall asleep and wake up with worrying about where he is.  He is certainly getting very familiar with my voice and my husband’s voice.  It says something that I would give up work outs and other things to spend time with him.  I must admit my husband is a little bit jealous but my nephew is just a baby after all and needs everyone in his family to take care of him.  It takes a village and for the sanity of my brother and sister-in-law I am more then willing to lend a hand. 

The good news is that I get to see him again tomorrow.  However, tomorrow I share with my mother and sister which is why today was so important for me to spend time with him.  He enjoys coming to our house but he loves being at his house.  His little eyes light up when he sees his mom and dad which is just the way it should be.  I hope as he gets older he understands who I am and that we grow a special bond between us.
They are thinking about another one which then I will have two children to dote on and really looking forward to it.

Come Monday it will be about my husband and hopefully we will be in our kayaks talking about the wonderful weekend we had.  I love spending time with my family and especially my nephew but my favorite man in the world is my husband and it makes me extremely happy to be out on the water reading, fishing, and relaxing with him. Here’s to a great Memorial weekend.


I have been doing a lot more hot vinyasa lately and in these type of classes we are in postures that require shoulder strength.  In the past I have been in child’s pose since my shoulders just couldn’t take the brunt of
staying in downward facing dog for long periods of time.  However, with my shoulder exercises and I’m doing them at least 3 times a week my shoulder strength is actually improving.  Last night during my
yoga class I did take child’s pose without shame by the way but I was able to stay in shoulder baring exercises longer.

I really think since my trainer is having me use lighter weights and work them more often it is really helping. I do feel like my shoulders are fatigued a lot but they are getting worked more now then ever before.  I’m realizing however that my wrists are not all that strong and although my shoulders can take extra pressure for longer periods of time my wrists aren’t able to keep up with the shoulders.  The good news is that I am meeting with him this morning and this is a perfect time to bring it up and see what can be done about my wrists.

My hand strength is the same and honestly I’m dropping things more at this particular time.
It could be a combination of distraction, fatigue or even some stress.  When I’m not fully engaged and thinking about my hands they do become disconnected from me especially if they are numb and I tend
to forget they are there or that I’m holding something.  I have broken 2 coffee cups this week and dropped a strawberry smoothie right down the front of me.  My fingers were definitely numb when holding the smoothie even in plastic but still it happens and I have to be paying more attention.  All in all my Raynaud’s is getting better so I just need to continue to work on it and know that my hands need a little extra attention.


I wrote recently about having a lack of motivation and finding myself in a funk with weather and trying to figure out how to get back into the game of life.  I realize now that I’m actually feeling sad.  I don’t have any real reason to feel sad but I was reading a book that is so far from sad it doesn’t make any sense but I was started to cry while reading it.

Yesterday morning on my way to Bikram it was 5am and I didn’t have the radio on in my car nor was I do anything other than driving to my favorite type of yoga and started to cry.  Again, I have no idea what brought it on and honestly I felt better after my cry but still unclear why it happened. I certainly think I’m in a funk but I also think that it probably won’t take long to get out of the funk either. 

Yesterday afternoon it was very warm and sunny here in Portland Maine so I used that time to
walk to the library and get some new books, walked to the yoga store for some shopping and took my walk right down to the water where I sat and started reading one of my books.  I will blog about this book
after I’m done because chapter 1 and I’m hooked.  It is a book about MCTD, UCTD, Lupus and other autoimmune but not written by a doctor, instead written by a woman who is living with it.  I can’t
wait to finish this book and it probably won’t take me long and I’ll share the details.  That brings me to my next crying episode which happened while I was reading this book.  She didn’t say anything sad, I didn’t feel bad for her, I didn’t feel bad for me but I was feeling  bad for people with autoimmune diseases in
general.  A good friend of mine got tested yesterday because she has not been feeling well now for months and they cannot figure out what is wrong with her.  I’m no doctor and don’t pretend to know how
frustrating it is for them to constantly see a patient and not have any news for them or be able to tell them what is wrong.

My symptoms were so clear that my general doctor figured autoimmune but needed the expert to confirm. My ANA test was clear that I had MCTD.  I just read an article in Prevention (April issue) that a woman lost all her hair and developed joint pain and had other symptoms they couldn’t figure out but blamed it on stress, and it turns out after several years of going undiagnosed she had Lupus.  I am not saying I enjoy
having MCTD but I have a name for it, I have a game plan, I have a treatment and I’m typically on the same page with my doctors about what needs to be done.  I would think that not knowing what is wrong
would actually be worse than hearing you have an incurable disease which is an autoimmune disease.

I write in my journal and this blog to help me get my thoughts out and sometimes they are jumbled and scattered and unclear even to me but this helps me figure out where I am at the present moment.  Presently I’m sad but working towards finding that peace again.


I have kind of come up with a solution to not being able to get into the Bikram studio as much as I would like but still keeping myself warm and fluid off my joints. I’m turning to the sauna again.  I can jump in there after work for 30 minutes which is way better than trying to find the energy to do 90 min at the end of the day and I’m going to use it at lunch time. If I can get a work out in for 30min and jump in the sauna for 30 min on my lunch break maybe that will be enough to keep me satisfied until I can start getting in the studio again like I was before.  I’m also pulling a double shift once a week since it seems I can muster up the strength for that but multi times a week may be too much.  It certainly helps me to sleep better when I go to yoga in the evenings but maybe I can get the same relaxation from the sauna.

I need to explain that I don’t have trouble sleeping and since my day starts at 4am I’m in bed at 8pm sleeping through the night but going to bed relaxed is so different then just going to bed wired from whatever I have going on that evening.  When I do yoga at night I’m literally climbing into bed as soon as I get home so it doesn’t leave a lot of time to spend with my husband who I haven’t seen all day therefore long term that isn’t fair to our relationship but he does understand this temporary.  With the sauna I could be home in time for dinner and still be able to enjoy a little time with him.  It might be a good compromise for a bit of time. 

I don’t feel as good in the sauna as I do in Bikram but I’m willing to do whatever necessary to make sure I stay warm, limber and decreasing the fluid.  If I get fluid buildup especially in my hands then they become stiff and I’m trying to keep that from happening.  I also don’t have the stiff feeling in my knees and hips when I have regular yoga practice so I certainly don’t want to lose that either.  Any day that I wake up feeling good without pain, stiffness or soreness I think of that as a great accomplishment and want many days like that. The yoga helps me achieve that.