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.   

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.   

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.

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. 

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.

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. 

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.

New Commitment

I apologize for being gone so long, but life got in the way.  Either I took on more than I should have, or I got lazy.  Maybe it is a little bit of both, but I have been away wrapped up into life.  However, I’m making a new commitment to writing and this blog is very much like a journal for me so what better place to get my thoughts down in writing and share my experience with others.   I’m going set a goal to blog at least once a month even if there is not much to report.  I know that many people struggle day to day when it comes to MCTD and Lupus type diseases so having an outlet to communicate with one another is important.  Although this is not an opened blog for posting, I do post everyone’s comments and hopefully you are all finding helpful information from others as well.

I need to take a moment to catch up.  I am currently at 496 days without a flare up and yes, I’m so thrilled by this. The unfortunate reality of this disease is that even though my flares are under control I’m still having issues.  Let me clarify by saying that am categorized as having MCTD with unaffected internal organ Lupus.  My flare ups will cause severe pain in all my muscles and joints from feet to jaw.  I am usually in bed for a flare up and the recovery time is typically hours, not days.  I have the chills, a sore throat, stomach sickness, and need full rest to recover.  Being able to say that it has been 496 days since the last time I found myself in bed feeling this way is remarkable.  I think the length of my flares is directly related to the new medication I started back on January 1, 2018.  Prior to this it had been 187 days which was also my longest time without a flare.  I felt marvelous that so many days had gone by, but then I woke up on day 188 in a flare.  I always enjoyed my flare-up free days but knew it was only a matter of time before the next one came around.

In December of 2017 my doctor approached me about trying a new medication that would be a self-injection. I started taking Benlysta, which targets specific immune cells, rather than the blanket approach of other therapies which suppress the entire immune system. Since that time I have been without a flare and now I really don’t worry about when the next one will come. I might not have a flare again, but it doesn’t mean I don’t struggle.  Lupus and MCTD manifest in all different ways for people.  With me, my hands and feet suffer the worst, but I also have chronic hip pain on one side.  I have hammer toe, in each of my 10 toes, but very severe in one toe.  This crazy form of joint dysfunction is very painful and actually has inhibited me from wearing regular shoes.  I lived with the pain in shoes for several years but about 4 years ago I had to stop wearing regular shoes and only wear sneakers, sketcher sandals, and a pair of boots that I can deal with.  I live in Maine so wearing opened toe shoes year round looks a little ridiculous but it is my reality.  I have that pair of boots for when it snows.

I finally got to the point of full frustration and went to see a podiatrist. Unfortunately, the answer was not what I was hoping for. The first suggestion was to move out of Maine to warmer climate for my shoe wearing and my severe Raynaud’s.  The 2^nd suggestion was to have surgery on that one toe to bring it back into line and have surgery on the other toes as needed.  After great deliberation with my husband we decided I should not go ahead with surgery.  I don’t’ know that my disease wouldn’t reverse the surgery and my toe could end up like this again.  My thumbs are completely crooked and when surgery was brought up several years ago to fix them my doctors said no, let the thumbs fuse to the place they want and once they fuse enough they will stop moving.  I know this does not sound like sound science, but it is what I’m working through.  I have gotten use to my thumbs so I’m hoping I get use to my toes.  We are moving to warmer weather so opened toe shoes are more than acceptable now.  I’m grateful to be able to wear shoes at all.