Protecting Hands and Feet in the Cold

One of the underlining effects of MCTD and Lupus for me is Raynaud’s which is a circulatory issue with my hands and feet.  Some people experience it in the tip of their nose but I do not have that symptom.  My Raynaud’s is considered severe and my fingers and toes have a purplish tint all the time unless I’m in hot yoga, sitting in my sauna, or baking in the sun on the beach.  Even working out and working up sweat, my fingers are still a bit purplish and that is simply because most environments are cool.  At work in a gym, even in my home my fingers are purple.  I try and keep my feet covered but it is hard to constantly keep my hands covered.  Thankfully most of last winter and this winter I am tucked away safe at home so if I do go out, I make sure to have my hands in gloves and my feet in warm comfy boots.  

My Raynaud’s does not hurt and I usually do not have the whiteness and numbness but if I don’t treat my hands and feet with love, I run the risk of forming calcium deposits that can break open and be opened sores.  A few years ago, I actually had a finger that got infected and it took months to heal.  Part of the problem is that blood does not flow to my fingers and feet properly so injuries and sores take a long time to heal.  I learned my lesson the hard way but now it has been a few years since I have had any problems and my goal every winter is to ensure that I keep my fingers and toes injury free.  I do have a medication for blood pressure that I use in extreme cold weather, but it gives me severe headaches since it is lowering my blood pressure and I don’t have high blood pressure.  I take it night but I wake up in the night with a terrible headache and it lingers the whole next day so as you can imagine I use this medication sparingly and only if I really am not able to protect my extremities naturally.  

Some people have had luck with acupuncture treating their Raynaud’s and I too have tried it but I didn’t have the same success. I think acupuncture is a great alternative to medications if it works and I’m sure others have tired essential oils, and other alternatives but I haven’t found a natural remedy yet for my Raynaud’s.  I work on my circulation with yoga, sauna treatments and just keeping up with exercise and good nutrition but unfortunately it isn’t quite enough to make the purple color disappear.   

Looking forward to the warmer weather so that it isn’t so severe but living Maine, I’m still 4-5 months away from any kind of warm weather.  I am looking forward to it, but it is a long ways away.   

61 Days in the Meditation Challenge

            I’m 61 days into my 100 days of mediation.  I have learned so much in the last 61 days, first I know that I can sit in silence for 10-15 minutes.  In fact I need to sit in silence to really get my day started.  I notice my breath and I also lose focus of my breath which allows me training to bring it back to my breath. Not getting stuck on thoughts has really helped me to control moments of rumination.  I didn’t even realize I was a ruminator until I started to really take meditation seriously and yes I have tendency to ruminate which really doesn’t do me any good.  The best thing I have really learned during this process is that I’m content with myself enough to just sit and enjoy being in that place with that silence and my breath.  Some people find meditation intimidating or they might believe they cannot do it, or don’t want to do it. However, finding contentment within yourself is a quite a nice revelation.  We are with ourselves 24/7 so we should probably like, be proud, and enjoy the company of ourselves.  This process is teaching me that. Even when this challenge ends after 100 the routine of daily meditation will always be there for me.

Checking in after so much time

Although I have stepped away from my blog for a very long time I wanted to check in.  First I want to explain why I have been absent.  I feel fine, in fact I’m doing great.  We are living in a weird time where many people are struggling with health, career, being alone, feeling alone even in a house full of people.  I am not struggling, in fact I am thriving.  On March 2020 I went inside and there I have stayed.  I am not venturing out into the world even today I’m only going a very few places.  I was fortunate enough to be able to work from home and last year made a home office, a gym, and wellness center at my home.  The days of going to a gym and working out is over. I no longer leave to workout, everything I do is at home and I love it.  My husband and I are both very careful as he always has to be at his office and with my immune issues we have to take this very seriously.  While many days we feel confused by the information we are getting we are certain that keeping me healthy is the main focus and we do this by keep him healthy.  Naturally boosting our immune systems with good food, keeping hydrated, keeping active, being outside as much as possible for fresh air and a little vitamin D.   

I have been fortunate enough to be able to do all curbside or deliveries so I don’t venture into grocery stores and once the weather became nice, my husband and I are out golfing as much as possible.  We walk the course, breathing fresh air, moving our bodies, enjoying some quality time and wonderful conversation.  In the winter we use the trails for snowshoeing, or trail walking and still get as much fresh air as possible and be outside as much as we can.  Keeping in mind that the cold is really hard on my body so luckily we had a mild winter last year and hoping for another mild winter this year.  Time will tell.  

While I am doing well and feeling good it is very important to maintain a good healthy lifestyle as that is really the best combat against the virus.  My immune issues are not curable but maintaining my health is very manageable and makes me feel impowered.   

Welcome the New Year

The New Year arrived very much like the last several for me. I didn’t see the ball drop. In fact, I really don’t remember the last New Year’s that I did see the ball. A friend of mine sent me some pictures this past weekend of a New Year’s where we were dolled up and out on the town and I do not have any reconciliation of this moment in time.  If I had not seen the pictures for myself, of myself I would have thought she was talking about someone else.  The New Year’s thing isn’t really for me.  I am not one to make new year’s resolutions and or have grand ideas about what the new year might look like, until this year.   

As I say good-bye to 2020, I realize I will never have another year like that one. A year of complete slowing down, even stopping in some cases.  A year that I devote to myself and my husband.  This year allowed for retreating inside, reconnecting to one’s self, and doing absolutely everything at home. A year that came with challenge, uncertainty and upheaval, but also a sense of calm, quiet, reflection and perspective.  Every day was dictated by weather, if it was nice or even slightly nice, we were outside, if it wasn’t, we were inside.  We used to work hard all week and wait for the weekend. A weekend of overbooking ourselves and being tired as we started the next work week.  The fatigue of this of round and round life style would cause me flares on Fridays or sometime on the weekend as my body would just give out and force me into rest.  I didn’t see this as it was happening but when the world stopped, when I stopped, I could see clearly.  I worked from home, although my husband had to leave every day to go to work when he got home it was as though he conquered the day, survived the day and relished in the fact of being home, safe, and content.  We looked forward to the weekends but for different reasons, we did more house projects, we golfed a ton in the months that allowed.  We even gave ourselves permission to sit and watch terrible trash tv.   

This year is the year for finding balance between the extremes, to do what really matters, what brings us joy as we and also just a sense of sitting and doing nothing if we need.  I used to think that sitting was a sign of laziness, but I realize that is just a perception people have or create.  Doing nothing is a sign of growth, contentment, satisfaction and a clue that you enjoy being with yourself and maybe your significant if you invite them to sit and do nothing with you. With MCTD and Lupus I am not still not going out and doing stuff but as the people around me feel the COVID fatigue and winter blues they are determined to get out and start living again, I will continue to watch from the safety of the home and maybe feel jealousy that I too cannot just give in to fatigue or will I feel sorry for them that the fatigue maybe an indication that they are not content with themselves. I really don’t know.  My husband said to me early on this COVID state that he was so surprised that I was ok being home and not losing my mind.  I don’t have the luxury of feeling cooped up, of feeling stuck, of losing my mind, because I don’t have a choice but to stay safe, to stay healthy, because I don’t know what would happen if I got COVID.  Maybe nothing would happen, maybe it would be unbearable, maybe it would be deadly.  Those risks do not allow me the opportunity to feel antsy so I don’t.  

Yes, I do want to see friends and family and I do want to travel again and even go out on a date with my husband.   This time is temporary, so I look forward to seeing this year bring change, to opening back up, to living outside my house a little more but I also want to hold on to the sense of stillness, of being content right in this moment, to feeling safe, to waking up each day flare up free, and to start dreaming again.   

THE HOLIDAYS ARE HERE

It has been way too long since I last checked in but we are living in weird and uncertain times.  We are all navigating an unprecedented year filled with so many different emotions.  As I watch the world from a far and as I realize that for 10 months I have been isolated in my home, taking every precaution and trying to stay healthy, I’m doing quite well considering what other people are faced with. I know 2020 has been challenging for most people but for me I don’t want to write this year off and pretend it didn’t exist.  I was forced to stop, rest, reflect and pivot into a world that may not be ideal forever but it was just what I needed for this year.  This year showed me what I cannot live without, and those things are what matter, I have a new appreciation for just sitting quiet, spending time with my husband, seeing those that I love outside being safe.  I have turned my home into my everyday place.  Everything I do, is done right here and I like it.  I like the space we built a few years ago, I was just too busy to really enjoy it.   

I told my husband yesterday that for the first time every I’m going into the holidays not stressed and not totally exhausted.  However, I’m sad this holiday season because I won’t be able to eat, drink, be merry and love on all those that mean so much to me.  Is the sadness worth the no stress and exhaustion? It is not a tradeoff but there must be a place to meet in the middle as we move forward.  This time of isolation is temporary and as I move back into the world and back into the a new normal, I need to live in that medium space. I need to create that medium space.   

I have been flare up free 295 days, considering I have been at home for 287 days I think there is a bit a of a correlation.  I did have a long run of nearly 800 days that ended at the beginning of this year so I’m hopefully I will be able to get back long periods of time without flares but I just take one day at a time and continue to journal, and be grateful for each flareup free day.   

I wish you all the healthy and happy holiday season, taking care of ourselves is the best gift we can give and receive.  

WORKING OUT WITHOUT THE GYM

Most of the world went home 20+ weeks ago and I’m still here.  The autoimmune disease situation puts me at high risk so I am making daily decisions that are right for me and my house-hold.  As Maine started to open back up and gyms were opening their doors allowing a few people in at a time for exercise I had to make the agonizing decision to cancel my membership.  Health is very important to and I realize I need daily exercise to maintain my health so I don’t take this lightly.  16 weeks ago, when I came home, I thought it would only be for a short amount of time and not really realizing what was about to happen so I had some exercise stuff at home. I used Leslie Sansone which is a great indoor walking program. I started Leslie 17 years ago when I had to ease myself and my arthritic body into a gentle form of exercise and living in Maine, we have more cold months than warm so my workouts were inside walking with Leslie.  Once my body was able to walk and then jog and then run, I did finally join a gym 15 years ago and have been there ever since.  

I don’t need people around me to motivate me to workout but I enjoyed being at the gym in order to mix up my workouts, jump into some different classes and really weight lift for strength.  The bonus was sitting in the sauna after each workout.  So, once I realized this was not temporary, I had to figure out what my exercise routine would be home and it actually took some time and preparation but I think I have it down now.  I did decide to purchase a few items but I have good mix of cardio, weight training, yoga, Pilates and meditation all in one place now.  I have noticed that my overall strength has declined ever so slightly but I know I can get it back.  We never seem to push ourselves as hard as a trainer would and although I don’t need motivation to work out, I do need some motivating to lift a little heavier and to give it one more rep.  We have also entered into summer in Maine so I get to be outside so much doing all kinds of walking, exploring and enjoying this brief warm time as I know it will be over soon. Overall, I feel really good about where I am and how I feel.   

I didn’t fall into the trap of gaining weight at home but that is also because all my groceries come to me and I don’t have spontaneous purchases or go out and eat or even stop for little treats so the food that comes weekly is always a surprise based on what they have to deliver and every week it is different but certainly plentiful and we are eating better now than ever before.   

I do miss seeing people, I miss teaching yoga classes on the weekends, I miss hugging my nephews, I miss going out to meet friends, I miss just sitting out on the deck with a group of people. However, as far as how things could be, I am thriving and I’m healthy. My husband and I are golfing a few days a week as we can do so safely.  We always walk and social distance with anyone that is playing with us.  We are so careful to really take care of ourselves to ensure that I stay safe.  I realize that no one knows what the symptoms might be, but the worry is we don’t know how my immune system would react to the virus and it is not a chance I’m willing to take. I’m over cautious but I don’t make apologies for it. I don’t expect anyone to do anything different I am just doing everything I need for me.  There will come a time when I too will be able to walk in the world again without much thought but that time is not now.  For now, I will stay home, exercise daily and will get my full weight lifting strength back. Hope you are all staying healthy and safe  

LIFE IN QUARANTINE

I have flare-up free for 64 days now and been home in quarantine almost the same time.  I came home to work to and take care of myself during the pandemic and really didn’t know how long it was going to last. I’m at the 8 week mark and other than a walk outside for fresh air I’m not venturing far.  There is a this underling question about being more at risk or not. 

With MCTD and Lupus I’m not sure and they aren’t really sure if I’m at more risk but the real unknown is what will my immune system do if I do get COVID-19? This is not something I want to test and although there is a chance that my immune system would put me in flare and do what it does best which is zap out everything in its path I am not willing to take that chance yet. I have taken precautions at home and stayed out of the public, have lots of deliveries, exercise every day and try to continue to eat well.  Being healthy is part of keeping me healthy so although I too want to indulge in comfort foods and quarantine snacks I am doing everything I can each day to ensure that I stay as healthy as possible and make it out of the this time feeling good and well. As well, my husband is an essential worker who needs to be out in the public so navigating that has been tricky but definitely doable.

Finding ways to exercise outside in the fresh air has been very uplifting.  Finding people to exercise with outside and social distance has even been more uplifting. There are ways to find joy even in these uncertain times and it is also ok to feel every emotion including sadness and anger as we think about our current state the state of our loved ones. Everyone is dealing with their own situation when it comes to this and there is no right or wrong way, it is all what is best for the individual.  What is working or right for me may not be what is ok for someone else and that is totally ok. We are going to have to make choices and even more now we need to feel good about our choices.  As an induvial with an autoimmune disease I am making choices and decisions for myself all the time so now it is just ramped up even more. 

As a way to really stay connected I zoom a lot with people and although it is a bit of a cluster when everyone is trying to talk over each other it really is a great way to see people.  I hope you are all doing what is working for you and looking forward to finding a new social base line soon.

HEALING WITH SINGING BOWLS

I want to first explain what singing bowls are before I describe my experience with them. 

The sounds generated by Tibetan Singing Bowls are a type of energy medicine that promote healing from stress disorders, pain, depression, and most forms of dis-ease. Healing processes are initiated through entraining our brainwaves to synchronize with the perfect resonance of the bowls

Two weekends ago when we were still getting out and about I went to a singing bowl workshop.  We were practicing social distancing and many of us just needed some of the healing that the bowls offer.  The workshop was 2 hours, I took my yoga mat, blankets, a bolster, and an eye pillow.  I settled in on my back, very comfortably and the healing began.  He had 7 crystal bowls of different sizes, tones and vibrations.  Each bowl represents one of the chakras. 

Quickly, Chakras are the circular vortexes of energy that are placed in seven different points on the spinal column, and all the seven chakras are connected to the various organs and glands within the body. These chakras are responsible for disturbing the life energy, which is also known as Qi or Prana. The seven chakras are root, sacral, solar plexus, heart, throat, third eye, and crown. These different bowls when being played send vibrations into the body.   

Along with the bowls he used vocals sounds, no words, chimes, bells and it was just one person making all the beautiful sounds. The sounds are loud and the vibrations strong, I could feel it all in and through my body. It was a 2 hour long meditation session, although I was moving between really thinking and almost sleeping I was aware of the sounds, the vibrations, and the calm that the bowls offered.  I have been finding time to meditate for 1 or 2 10 minute sessions each day and this was an extended version.  I was lying on back and don’t think my hips, knees, ankle and back could sit up that long.  In fact my hips give out at about the 20 minute mark.  Interestingly enough yoga postures were practiced for the very reason to condition the body for long hours of sitting meditation. 

I practice yoga, I also meet myself on the mat at any given time depending on how my body feels, what type of range of motion I have and where my balance is.  Yoga instructors are just normal people and we have to practice what we preach and yoga can be done by anyone if they listen and are aware of what their bodies are capable of.  Sometimes personal yoga practice is very restorative and other times high intensity power yoga, all depends on the moment.  Whatever type I’m practicing I will incorporate singing bowls music when I can.  For the classes I teach I am considering learning to play the bowls and incorporate it in the savassana portion of the practice. It is very beautiful, soothing, healing and calming.

FINDING BASELINE AGAIN

            It has been several days since my flare and I’m still trying to find myself back to baseline.  I have had another flare since my last post so today I’m at 9 days without a flare but have not found my baseline quite yet.  The fatigue is still overwhelming and even taking several days of pure rest has not brought me completely back but I’m hopefully I will find that baseline again.  The flares themselves are very quick, it is getting back to doing everything I was doing before the flare that is difficult. 

            I’m in a good routine that includes weight training 2 or 3 times per week and before my flares started I was increase weight each rep at each session.  This is a great accomplishment but it is also a challenge because as I’m increasing my weight I’m breaking down the fibers in my muscles, causing inflammation, and trying to heal. Is it possible that my immune system is kicking into gear to heal these torn fibers? I think this is a possibility.  I had my weight training sessions last week and brought my weight back down.  Both because I was concerned about flares and also because my fatigued body could use the decrease.  This morning I had my weight training session and increased my weight on a few reps and sets and kept it down for the others as I gradually start to bring my body back to baseline.  Maybe there is no correlation between the weight training and flares but since I’m causing inflammation in my body I believe there is some.                  In the past I would increase my prednisone since it is a cure all drug and instantly get back to baseline but this time since I had gone so many days without a flare and kept my prednisone down so low for so long I didn’t want to take that route.  If I find that I’m flare more often or if I have a flare again within the next 7-10 days I will probably consider a slight increase.  I felt so good for so long and just wanting, craving, to be back at the same feel strong, feel good place.  It takes time and patience, which I have both. 

Recovering from a Flare

            After 778 days without a flare, I had one.  I wasn’t expecting it and almost stopped thinking about when would it come.  It is a reminder to me and reason I journal every day even over 2 years later because with auto immune diseases we just never know.  We can be thankful for our flare up free days, we can push our bodies, we can live as though we will never have a flare again, but these diseases remind us they are not curable. They are certainly manageable.  We have control over our bodies and diseases and part of the control is being patient and calm when a flare comes and makes us feel out of control.

            After 778 days my flare was different this time.  I almost wonder if it was brewing and if I had been teetering for a bit of time.   I was feeling true exhaustion, the type I hadn’t felt in years where my mind was foggy and I could have slept at a moments notice.  I even took to drinking coffee in the mornings to ensure I had the energy to make it through my long days.  On Friday this past week I got my morning work out as normal, went to work and did a full day, a full stressful day and then I just decided I was picking up take out for dinner.  I think the last time I got take out and took it home was over a year ago and probably several years before that.  We either make dinner or just have a snack.  We sometimes go out to dinner but that is typically a Saturday or Sunday night, never a Friday.  My husband and I are both wiped after a week of work and don’t have the energy to go out. 

            Apparently even the thought of opening a yogurt or cutting up an apple was too much and I found myself at the Thai place ordering food.  Got home and ate and headed to bed, nothing out of the ordinary.  When I woke Saturday morning my hands were about 3 times bigger than when I went to bed, I could not make fists and I needed to open the yoga studio for my class. No time to even process what was happening other than I just thought the sodium and MSG did a number on me. 

            During the yoga class I teach I was so tired; I still had a long day ahead of me and needed to get my energy.  I went to the gym after my yoga class to get my own workout and jumped on the elliptical for 60 minutes. I let me mind go and just let my body do the work.  Once I got home I needed to clean up and eat and when I got into the shower the flare started.  My throat was so sore, my body was starting to feel pain all over.  My hair felt weird while I was washing it and I just needed to get dressed and get ready for the full flare. 

            As I was brushing my hair, that brushing motion was hurting my hair. I know it sounds weird and I have written about in other posts, but my hair actually hurts during a flare and really everything from my feet to my jaw hurt.  The movement of walking is so painful it puts me to bed.  This time I had severe pain but I could walk even if I did it slowly, so I had a nice healthy breakfast, a warm cup of tea and rode the flare.  This flare did not give me the chills, it did not put me in bed, it did not make me vomit, it did not make me feel like I was losing control.  I stayed close to home and rested my body.  I went to bed early and work up the next morning completely flare up free.     

            Everything was back to normal, no more sore throat, hands back to regular big size, pain in my body was gone and that total feeling of exhaustion was gone.  I went to teach my yoga class and felt like my body was performing great.  Went for a nice challenging workout of my own after yoga and then went home to get my husband and went for a walk around the golf course on a gorgeous sunny 40 degree day. In the middle of winter we have to enjoy these little gems that mother nature offers us and I was not going to miss it. 

            After our walk I did need to go home and rest.  My body was still recovering and my mind was just starting to fire up again. The day before I was having trouble speaking, thinking, forming a thought, communicating what I wanted and struggling just being me.  Sunday I was back to my playful more calm, less foggy way.  This flare was not nearly as bad as they have been in the past, but I did have one and it reminds me I need to do what I can do on the days I can do it as the day will come again when my body is in flare and working through it. 

700 Days Without A Flare-up

            I hit a huge milestone, going 700 days without a MCTD or Lupus Flare-up. Some might be wondering why I still journal daily about my flare-up free days since I’m at 700 days. I have been journaling every day about my disease and how I feel since August 14, 2003 when I had my very first Rheumatology appointment and my doctor said that a daily journal should become part of management plan.  All these years later it has not only become part of management plan, my trigger finder, but truly a daily habit. Even if I don’t have a lot to write down, I still put down how I feel when wakeup, how many days without a flare, any medications changes, and any other information that I might need to go back to at a later date.

            I’m still trying to ween myself off of prednisone but when I reduce my medication I start to not feel well.  The flare doesn’t come, but fatigue becomes a problem, stiffness increases, and brain fog becomes an issue.  These are not things that keep me in bed but they are things that inhibit a successful day, so I write about it.  I document and keep trying.  I also document my sleep and things that help or hurt my sleep. Obviously there are certain ways everyone can help or hurt sleep but there are smaller ways that when I write about them I can see trends and make changes and make sure I sleep well since the healing process takes place during sleep.  I feel blessed that so many days have past and I just keep waking up feeling good, doing what my body will allow and continue to get stronger.