Category Archives: Relationships

CHECKING BACK IN

I have not been paying much attention to my blog lately other than weekly check in with steps but the truth is my MCTD is pretty quiet so I haven’t had much to discuss recently. I am not complaining about a dormant MCTD but I do think it is time to do a full check and reconnect.

I am at 242 days without a flare and with the extremely mild winter that Maine has had this year I have not even suffered from Raynaud’s much either.  My fingers are feeling much better and using the compound seems to have helped the issues I had over the summer.  I have to see the doctor again and have updated X-rays done to see if the calcium deposits are really smaller or gone but my fingers in general really feel much better.

As many of you know I am completely committed to my yoga practice and teaching these days so although my steps are right where they need to be I am not focusing on walking, spinning, or other cardio activities as much right now.  I am in the yoga studio or at home doing yoga every day and that takes a lot of time.  I was listening to a podcast the other day that said don’t let hobbies get in the way of people, relationships and family.  I think my husband would whole heartily agree with that statement but also realizes that I need to take this time now to establish myself as a yoga instructor so I can do more with it in my future and see where this may take me.  I love teaching, I love learning and I love doing yoga so all in all it was the best decision for me to make at this time in my life.

I do hope to find a nice balance between my yoga, cardio, weight training and of course my family and friends.  If only I could get my husband to join me in doing yoga I would be able to spend time with him while we did yoga but that is not likely for at least for the near future.  Perhaps as we move forward into our mid-lives it will inspire him to stay flexible and work on yoga for his body and mind.  Speaking of mind, my meditation practice is dialed and do get a few moments every day to sit quietly and just breathe.  There has been some research recently that states that a daily meditation practice could help with autoimmune diseases and chronic pain.  Find ways to relieve stress and finding ways to ensure that I don’t get over fatigued greatly helps with my MCTD and chronic pain, therefore, meditation is a great tool for both of those things.

With 242 days behind me I forget that I even have MCTD some days but I am also not new to having a long stretch being flare-up free and then having that flare that takes me back to zero.  I half expect it any day but I also don’t expect it to ever come again.  As we age and our hormones change that can also help with reducing the frequency of flares, good sleep, moderate eating, reducing stress, mindful activity, giving and receiving love and peace all help in managing the symptoms of autoimmune diseases.

I look forward to my next doctor appoint to see where my numbers are and what my X-rays look like and can make adjustments from there, but until then I will continue to do what I do and hope for many more flare up free days.

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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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HAPPY EASTER

Some of you may or may not be celebrating Easter today and in my house-hold we celebrate Easter the way we do most holidays by eating. This is not a religious holiday for us but instead a holiday wrapped all around food.  Let me explain, we start with Easter brunch which by the way we all love very much.  We have gone to Easter brunch for 25 years as a family and my spouse and sister-in-law have been joining us for the last 12 years and now my nephew for the last 2 years.  This brunch is a place where we make memories happen every year.  Every year something fun happens or we create something fun or silliness just starts. The Easter bunny comes around, the kids go nuts and walla silly starts. This is a place where although it is “classy” they take the class down a notch and just let the kids have some fun. My nephew gets blueberries with whipped cream which is a kids dream and the rest of us chat, laugh, and just enjoy the time together.  One meal down and yes we are stuffed but it doesn’t stop there.

We move on my mother’s home because the day just can’t be finished with Easter brunch.  We climb into more relaxing clothes and now that our tight pants are off well we just feel better and have made room for more food.  We do wait for a bit of time but not much before the tray of munchies makes it way out to the table.  You don’t realize how much you can eat when music is being played, dancing is going on, a little too much red wine might be consumed (yes even on Sunday early afternoons) and after munchies well the ham arrives with salads and sides and now we are sitting down to another entire meal.  Did I mention that there is dessert too?  I know because I’ve brought it!! I am just as much a culprit in all this as anyone but this is what we do.  We eat, laugh, talk, eat, dance, laugh, eat and talk some more. Honestly, I wouldn’t change this day for anything except the need to get into the Bikram studio which doesn’t happen on holidays but if I could that would be one heavenly day.

So, with all this eating what kind of choices do I need to make? I make sure that I choose gluten free first and foremost.  From there I can make other decisions and I usually choose not to eat any potato type foods and stick with eggs, meats, salads and fruits.  At brunch I will find a dessert I like and have it but I will look at all of them and make a decision based on what I really want.  When we get to my mom’s most of the food is all suitable for Matthew and I to eat because she is getting use to what we do and don’t eat but if there are things there that have gluten we won’t eat them.  Gluten is our main concern at this point and if we can avoid that we have done extremely well in social situations.  The dessert I made is great for Matthew, my nephew and me because I made a banana chocolate chia pudding.  I used a whole banana this time as my sweetener, with 2 tbsp of dark cocoa powder, 1.25 cups almond milk and 1/3 cup chia seeds.  I put everything in the blender and moved it to my glass jar and although it isn’t being presented very pretty in the jar I’ll dish it out and put a little whipped cream on top and everyone will think this is just chocolate pudding, with a twist.

I wouldn’t trade in my moments with my family ever and nor should I. Yes we eat a lot but my family is fairly active, healthy, and eats well when we aren’t together so we use holidays as a reason to eat, eat and eat some more.  Happy Easter to all of you and hope you make the best decisions for you today.

 

PALEO ON VACATION?

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How easy it to stay Paleo on vacation?  Well, that all depends on what you set your trip out to look like.  My husband and I are celebrating our 10 year wedding anniversary this year and wanted to treat ourselves to a grand vacation, which we did.  Before we left we sat down to discuss how our vacation would look so we didn’t have to worry, discuss, and fret or anything about food and drinks on the actual vacation.  I decided that for my eating and drinking pleasures I would have desserts and drinks without any guilt.  I didn’t need bread, pasta, rice, beans, or other grains but didn’t want to pass on yummy desserts that tickled my fancy or fun tropical drinks.  Alcohol can be a trigger for me but I find if I have sippers, red wine and not the real sugary, fruity drinks I do ok. I had no issues but I also found a gem a place which I’ll talk about in a minute that combatted any stiffness, soreness or swelling that I might have otherwise had from eating and drinking.

We found lots of meat, especially seafood, vegetables, and fruit which were filling our bellies nicely and preparing us for sharing desserts to end our meals. This kind of eating and drinking would probably make normal people swell because we tend to overdo it on vacation when we wouldn’t normal over eat at home.  However, at the spa I found a decongestant room which is about a 110 and over 100% humidity.  It was Bikram but without the postures.  I would go into the decongestant room every day for about 30-60 minutes and just let all the toxins out of my body.  My body wasn’t stiff, my fingers weren’t swollen and I had found my favorite place at the resort.  It was a steam room, only hotter and steamier than your typical steam room.

My husband also experienced the decongestant room but he referred to it as being inside someone’s armpit.  Not the best visual but I understood what he meant all the same.  2 days of him in there and he had a greater appreciation of what it means when I say I’m off to Bikram.  I loved this experience and the sweating out the toxins what was really saved me on this trip.  I could be really strict and do strict Paleo but part of vacation is truly letting go of everything and just relaxing and if I’m constantly concerned about what I’m eating and drinking how relaxing is that.  Since I made up my mind before I got there my choices were easy for every meal and I encountered some fabulous food and walked for hours and hours every day so when I got back I was ready for real life again.

I also kept up with my HIT training and weight training while I was there for 30 minutes each day with 2 hours of walking every day but the walking was not exercise it was truly enjoyable and I know my cortisol levels were staying low during my “strolls” beach walking is magnificent and yes we did a little yoga and stretching but really should come up with more ways to play and exercise on the beach.  Vacation is a chance to reconnect to yourself, your spouse, your family or whoever goes on vacation with you.  It is a reminder of how we get lost in everyday life and need to come back to calm, quiet, relaxation.  I can’t wait for our next trip and thank my husband for all his hard work as he thanks me for mine so we can take trips together.  Paleo is a great lifestyle on or off of vacation but relaxing and being worry free is even better.

EASIER SAID THAN DONE

We are coming off of our first real weekend of Holiday parties and although my challenge of eating only gluten-free foods work wonderfully during the week, on the weekends things get a little more tricky.  We had Christmas parties both Saturday and Sunday and on Sunday it was my husband’s family Christmas party.  I have been part of this family for a decade but they are a large group of people and they love their pasta and bread, with dips and sauces and let’s not even mention the dozens upon dozens of different desserts.  Granted, I love his family’s food so much and I love my health so what’s a girl to do?  I did the most diplomatic thing I could and just chose the things that meant the most.  Yes, I had lasagna and considering I haven’t eaten pasta in over 7 months it really did taste exceptionally delicious.  I also splurged on the incredible desserts and when it was all said and done I’m still standing and no damage done.

Today I go back to eating clean, whole foods and make better choices but let’s be honest in my regular life these choices are way easier.  I’ll run into some rough situations in the coming weekends so during the week I need to be even more strict with my choices and choose to forgo even yummy gluten-free items so that when I find myself in weekend situations I can just go with the flow.

I realize that part of the problem here, if it really is a problem, is that I’m not that forth coming with people about what I’m doing.  I’m still learning and researching and have never been the type of person to try and persuade others so I’m just quietly doing things on my own with the help of my husband.  Also, it is hard to explain to someone that I eat “Paleo” while I’m sharing in a plate of lasagna if you know what I mean? Once I come to grips with the fact that this is my new lifestyle and I’m having long term benefits from it than it might be easier to speak about it in party arenas. Right now I just prefer to be choosy about my choices and bring more for myself and my husband.  That was a big problem this past weekend.  Over Thanksgiving we took a ton of food that we knew we could eat and everyone loved it with no question about it being a “diet” food but we weren’t prepared this weekend and realized our choices were limited.

After the party we both talked about how a little preparation goes a long way.  Going forward we will be more prepared but we also have to realize that this is the type of season that just revolves around food, food and more food.  Nothing wrong with food, I love it more than anything but I also love my health and want to make sure I’m not hurting myself.  I don’t believe that one day falling off the Paleo wagon will hurt me and I know I don’t have celiac nor am I lactose intolerant but I do believe that processed foods can cause inflammation and the more I keep my inflammation down the better off I’ll be in the long run. Perhaps I might even hit my 200 days without a flare-up this time around.

THANKSGIVING BIKRAM

Going back a week ago seems like an incredibly long time but since I do Bikram yoga virtually every day by myself it is so much fun when I practice with my sister. When she first asked me to meet her at the studio on Thanksgiving morning for a Bikram practice my first reaction was that I had way too much to do and couldn’t get it all done and be where we needed to be in time.  My extremely level headed sister reminded that all would be fine no matter what time we started our Thanksgiving festivities and that was a special moment for us.  We went and had a wonderful practice.

I was not surprised to see the room fill up fast with people but I was surprised that it was filling up with faces that were not familiar to me.  I don’t pretend to know everyone that goes to that studio but I am there enough to have real sense of who practices in the mornings who practices at night and who are the weekend warriors.  This particular day was all new people and brand new practices. Some had fluid practices therefore I knew they were practitioners and not newbies even though they were new to me.

My sister has been practicing and has a very nice practice. She is focused and stable during to the standing postures and pushes herself with a gentle hand and takes care of herself when she needs.  These are important aspects of this practice.  Many people have one of the aspects I listed above but she has them all and it shows in her practice.  We were so energized and ready to eat when we left there.

It wasn’t a hot practice but once all the bodies got in and our mats were close the humidity went up quickly and I rather enjoy practicing with higher humidity then higher heat. I don’t mind a hot and humid room but if I had to choose I would choose humidity every time.  My lungs particularly like the humidity versus the dry heat and I feel as though I can take deep long breaths during the entire practice.  They say that Bikram is a 90 minute meditation using breath and I use mine.  Even in the postures designed to make it difficult to breath there is a certain practice to knowing how to breathe in those difficult postures and keeping the mediation steady.

Mediation for me in this form is exactly what I need.  I find myself falling asleep every time I do a sitting type of meditation and did it quite often at Kripalu. Matthew would mention that he could tell the moment I fell asleep since my breathing changed.  In Bikram there is no way I’m going to fall asleep but I have to stay so incredibly focused and use my breath to keep me going for the entire 90 minutes.  Since the Bikram practice is always the same my body and mind do become familiar with the postures and therefore the focus becomes even more important. Breath becomes even more important to ensure that I’m focusing on my breath and not letting my mind wander in the postures that my body has become accustomed too.  The postures are the same but the practice is different every time and I rather enjoy my practices the most with my sister next to me sweating her stresses out right alongside of me sweating out mine. It was a wonderful day and I look forward to her coming home and us doing it again soon.