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.   

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.

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. 

150 Mile Challenge Finished Week 4

            Happy August 1^st, I only wish the summer days would slow down as I see them passing by too quickly and I know what is on the horizon after this beautiful hazy, hot and humid weather. This last week and few days I had finished the month at 158,053 steps and 62.82 miles.  For the month I had a total of 460,462 steps and 180.11 miles. I feel really good with how much activity I had in July and this challenge was just a way to push myself a little bit more.  Next July I’ll push myself again and a little bit more.  This past month the weather has been incredible and easy to be outside.  Many people would probably say it was hot, but considering how much body enjoys the heat, how good my hands and feet feel when my Raynaud’s isn’t in flare, and how much time I get to be outside, I never say I’m too hot. 

            I have written posts in the past about Hazy, Hot, and Humid being my 3 favorite H’s and I truly feel that.  My body reacts better in the heat, my mind feels stronger in the heat and my psyche just is better in heat.  It isn’t for everyone I completely understand and not every body can tolerate the heat even with Raynaud’s not everyone tolerates the heat well so I’m just speaking for me. 

150 Mile Challenge Week 2

Week 2 and I had a busy week but found my footing and walked every chance I got.  Except for a very hot day over the weekend where I actually took a golf cart and didn’t walk, so yes, I lost some steps but I’m still on track.  This past week I walked 42.88 miles, 112,092 steps and feel great.  Total miles thus far 75.07 miles, half way there with half a month left to go.

            I have a new revelation about my feet and as you know I like to share when things work, when they don’t and even when I’m not sure.  I do not believe that my ideas are right for everyone and anyone dealing with an autoimmune disease must do what is right for them and what they are comfortable with. 

In early May I attended an essential oil workshop and although I have been using essential oils for several years now I wasn’t really sure the right combinations of oils so I would use one at a time and usually in a diffuser and felt good about it.  In a later post I will talk more about essential oils and what I’m using now and for what reason.

            Back to my feet.  At this workshop they were discussing the benefits of Copaiba.  There was some education on what the difference between Copaiba and CBD oil is.  This link will take you to some interesting information https://wholenewmom.com/essential-oils/copaiba-vs-cbd/

            How other essential oils mixed with these oils can offer even more benefits.  I learned that Copaiba or CBD mixed with Vetiver was great for soothing chronic pain areas.  I really had nothing to lose since my feet have been at their worst recently and I’m at the point where I will literally try anything.  I had Vetiver and CBD on hand but bought Copaiba.  I started to use all 3 in a mix and rubbed it all over my feet, put socks on and went to bed. 

            After about a month I started to realize that my feet were feeling better, so I started putting it on in the morning before my workout and again at bedtime.   I have stopped using it in the mornings because it makes my feel too slippery inside my sneaker and I’m getting good results with once a day.

            My feet were feeling so good that I decide to go to the driving range in my golf shoes without my toe sleeve.  I had zero issues, nothing, nada, no pain, no soreness.  I couldn’t believe it.  This past weekend I played 2 rounds of golf in my golf shoes without the toe sleeve again with no pain.

            I was feeling so good that Sunday night I went into my closet chose a pair of shoes I knew I hadn’t worn in 4 years or longer, put them and marched down to the kitchen to show my husband.  I am in disbelief but in such a good way.  I feel so strongly that this mixture is working that I have now started to use it on my very sore crooked thumbs.  I can’t say that it is working, but I’m going to stick it out and see if eventually it might. 

150 Mile Walking Challenge

Starting July 1 my goal is to walk 140 miles this month.  I will need to average 12,198 steps per day over the course of 31 days to achieve this goal.  The first week is behind me at a total of 32.19 miles or 81,174 steps. My feet are feeling really good, I have a pair of sneakers that are working great, and getting out in this beautiful summer weather to walk as much as I possibly can. 

            Each week I will check in to log how I’m doing and I’ll also forgive myself if I don’t get to my actual goal, but I cannot imagine not getting there.  I’m ready to walk this month as much as possible and enjoy the fresh air, the great weather, my strength, and push myself to achieve this goal.

500 Days without a Flare-UP

            Today I hit 532 days without a flare-up and this is truly a huge accomplishment.  Keeping in mind that that 90 days was a long time for me to go without a flare and then I went a really long time at 187 days.  On day 188 I went back to zero. I had a flare that kept me in bed and although the actual flare did not last long, I had severe fatigue for several days after that flare.  I live as though I will have a flare again and it is all a matter of when not if, but as the days tick by I almost wonder if my new medication is changing the direction of my disease and perhaps I should stop wondering about the when and just start living as though the flares are over.  The good thing is I don’t put too much thought into having flares or not in my daily life, but I do journal every day and start with the number of days I’m flare up free.  My journal is a place to put down different things that happen in my life and around my disease. 

            Last June in 2018 I noticed that my hands were very swollen and had to take off my wedding rings and could not get them back on until the end of Oct 2018.  Once they went back on it was fine, my fingers had gone back to their normal big swollen size.  I wondered if it was the weather that was adding fluid to my hands. I am sensitive to extra fluid in my body since I can feel the adjustment in feet, knees, especially hands and fingers but also wrists and elbows.  I make sure to sweat every day through exercise and add extra sweat sessions through sauna and steam room sessions.  When I was practicing Bikram yoga 5 days a week for 10 years, I was getting all the extra fluid off my joints.  Now that I teach Hatha Yoga I don’t have time for Bikram and although there are times, I miss it, I’m not in a position to add it back into my life anytime soon.  Therefore, I need other ways to get the fluid off.

            This brings me today, June 25, 2019 I’m wearing my wedding bands. I had one day this month that my hands were too swollen, and they came off, but the next day they went right back on.  Again, I wonder is this a change in my overall health, could it be a start to remission of my disease, is the steam room and sauna really helping that much?  Questions I think about and things I constantly write down in my journal, looking for triggers, correlations, remedies, and perhaps even solutions.  I’m hopeful, but also understanding that our weather has not turned hot and humid this year yet so if it is weather related, I might notice some changes in July or August. I still use the sauna and steam room in the summertime, and I exercise every day no matter what time of year.  I’ll keep moving until my body is unable and I’ll keep track of my flare-up free days until I have one, which may or may not come at this point.  I’m not sure if MCTD and Lupus go into remission or not but some days I feel like I’m in it and some days I’m truly reminded I have this disease.

Keep Walking

If you have been following my blog you know that my favorite form of movement is walking.  I exercise of course, weight train, and bike, but I absolutely enjoy walking.  Even if I don’t feel great when I wake up I know I can put on a pair of sneakers and walk.  I love taking in that first fresh air before the rest of the world has woken up, I enjoy the noise of the birds and whistle of the wind. I like the darkish sky as the sun is just peaking out.  However, I only get these types of walks for a few months because I’m also a fair weather walker.   

I enjoy walking so much though that I hit the treadmill in the winter time as much as possible, just to keep moving and the blood flowing.  I do enjoy biking outside and spin classes inside. I absolutely love yoga and tolerate weight training.  I enjoy a good Barre Class from time to time, but if I was forced to only do one form of movement for the rest of my life I would choose walking.  I hope that my body allows me to walk right into old age and beyond the grave.  The way I found out I had MCTD was I woke up and couldn’t walk. That feeling made me feel so lost, so depressed, so dark.  I don’t take walking for granted anymore and do it as much as possible.   

I my last blog I mentioned I was having trouble with my feet.  So what does a walker do when she is resigned to a pair of sneakers, sandals and one pair of boots and find out that the sneakers are now causing so much pain she can’t walk?  First, I cried, I really felt like if I couldn’t walk, I didn’t know what I could do. I was having good luck with my shoes until I wasn’t.  I was buying good brands, the ones that I have always worn, they were new so the cushions were good.  After I wiped my tears, my husband recommended I go get my feet fitted.  My first reaction was, I didn’t want anyone to see my feet close up, I know my toes look like something out of a science fiction movie and I although I wear sandals, I never bring my feet close enough for anyone to see. My toes are purple and crooked, very attractive.  You might be thinking, “but your trying on sneakers, you need socks” when I have my feet fitted I’m barefooted so they can see what my feet are doing during movement and the machine works with bare feet, at least in my experience.   

After calming down and setting my ego aside I went over the shoe shop and put my name down on the waiting list for assistance.  There were 12 people ahead of me so obviously many people have trouble finding shoes that fit.  After speaking with the consultant it became evident that people come in with hammer toe all the time and my ugly feet were really nothing new.  Deep breath, new perspective and lots of talking we finally decided it was time to try shoes.  I can tell immediately if they are shoes I could live with or not.  Living with means there is some discomfort but not enough pain to cause me to limp around.  Many shoes I could have lived with, but then I put on a pair and truly felt no pain. No discomfort, actually I didn’t feel anything.  I walked around in them for ½ hour and then he said you know you can try these out for 30 days, wear them everywhere even outside and if they cause any discomfort come back we’ll start again.  Needless to say I still have those shoes and went back for a different color so now I have 2 pairs of sneakers to wear when I’m walking or working out.  I feel incredible and yet incredibly silly for waiting so many years to go and do this.  

WEIGHT TRAINING WITH MCTD

I have not been blogging lately because things seem so to be fairly steady for me so I feel like I’m writing the same thing each time now.  However, I received a question from a reader that I thought would be good to throw out to see what others think and possibly might have suggestions for this person.

 

“I find with my MCTD weight training makes me flare, but with cardio, I feel better unless I overdo it. All weight training is maddening with the flares because it tends to go on 4+ days. I stop weight training to heal, so I never really get anywhere. I can’t push through the weight training and just do it either because the flare makes me so weak and shaky. I’ve tried very slow increases but the flare is the same. MCTD is affecting my hands and feet a lot along with muscle tone so I know I need the weight training. Any suggestions?”

 

Thank you for taking the time to reach out with your question. I too have struggled with weight training off and on for the last 15 years and even though I feel like I’m managing things fairly well in my day to day life there are times when I know that I will not be able to weight train.  I have 3 days a week planned out on my calendar for weight training. I treat it like an appointment and so I see it as I am figuring out my next day or next week.  Life and reality kick in and maybe I only actually get 1 weight training session in a week because my hands hurt or I just don’t feel well enough for weight training.

 

I have moved my weight training sessions from morning to afternoon which seems to help.  When I wake up my body can still feel fatigue and my hands are stiffer in the mornings but loosen up as the day goes on.  I have also had a couple of meals by the time I’m ready to weight lift so I feel stronger.  I also pick a time frame for my weight training appointment.  Maybe it is 15 minutes or if my week is going well maybe 30 minutes, but I don’t go over 30 minutes because my body will absolutely flare during the healing process.

 

I should mention that I’m at 141 days without a flare and feeling very good about that.  I know that a flare can come at any time and maybe I’ll know why and maybe I won’t but I keep moving forward and jotting down my triggers in my journal.  I have kept a journal every day since 2008 and in my journal I can find triggers to help me pinpoint possible flare situations.  Weight training can be one of them, but limiting how long I do it and making sure I don’t over-work my muscles help keep me out of flare.

 

Healing from flares is different for everyone and even 5 minutes of lifting weights can cause a flare for some people so trial and error is key and knowing that just lifting is helping with your overall health so compassion and patients is so important. Using bands or machines vs dumbells or barbells can also help with joint issues and soreness, or using just your body weight for a session here or there might also help limited the number of the flares or days you are in flare.

 

Keep trying, lift only what you comfortably can and rest for a couple days after.  Good luck with your training and your journey with MCTD.