Category Archives: Fitness

Happy New Year / Update

First, let me thank everyone who has been following this blog and writing to ask questions and give your own stories.  Second, let me apologize for not being more diligent about keeping my blog updated.  I have been doing a lot of soul searching this past year trying to figure out what this blog is really for and where I’m going with my disease and life.  This past year starting in about March 2017 I got really ill and my disease took over in ways I was not expecting.  I was having difficulty with my hands and feet and just overall fatigue.  I was still working fulltime, exercising every day, teach yoga, eating has clean as I could, taking my medications and sleeping as much as my body would allow, but I was just not feeling well.  I started a new medication last year that didn’t really help all that much and just found that I was dealing with brain fog almost every day.

I was diagnosed with Lupus this past and scleroderma. Both of which has caused a bit of fear in my life but I also knew in the back of my mind that it is really rare to stay in the category of MCTD forever.  My internal organs have not been affected so I feel very grateful for that and will continue to do all I can to keep the disease managed as much as possible.  The scleroderma is contained in my hands, especially fingers, and toes.  Again keeping this contained to digits is far better than dealing with internal organ issues so I in no want to complain.  Very recently they have come out with a new FDA approved medication for Lupus which is a self-injection.  This injection is done at home that I give to myself once a week.  I have only had 1 injection and figured now would be a good time to start journaling about this new experience and development in my disease.

I went to the doctor office and had the nurse help me with my first one.  I practiced on a dummy thigh for a few times and then felt comfortable enough to give it to myself. My first attempt was not hard enough so nothing happened but then 2nd time I gave it a little more pressure, felt the prick and could feel a bit of warmth as the medicine rushed into my leg.  It didn’t hurt at all and had no side effects. They had me wait about 10 minutes just to make sure everything was ok and I felt well enough to go back to work.  She did say that I might wake up with flu like symptoms but I was not contagious to anyone.

I woke up Thursday feeling fine, no flu, no symptoms to worry about and headed to work.  She also mentioned I would get bruising but I did not.  It was Friday morning however, when I woke up with a fever and the flu. It was miserable, but I also figured that if I’m going to be doing this every week I was going to have to figure out how to deal with.  I didn’t work out that morning and came to work with some ginger ale.  I had a meeting first thing so my brain was foggy as I was not feeling well, but by noon that day it had subsided and I was back to normal.  All this is normal and I’m hoping that after a few more injections my body will be able to adapt without these symptoms.

I will have my 2nd injection this week and will write about that experience.  It is way too soon to know if it is working but the idea is that since people with Lupus have certain white blood cells called autoreactive B cells stay in the body longer than they should, using a biologic injection binds to these cells and reduces the abnormal immune system activity.

By starting this medication I was able to stop another medication, but still will use my core group of medicines that I have used for the last 15 years  I don’t know how long it will take to notice any change or positive effect but I’m guessing it should show up in my blood work in a few weeks.  I will have a follow up and will be able to have a better gauge at that point.  Until then I am being very strict with my eating, keeping it clean and consuming zero alcohol as to stress out my body any more than absolutely necessary.  I’m really working on adding sleep and trying to incorporate 9 hours each night to allow for adequate healing time in the sleeping hours, I’m just walking, doing yoga, and using bands for weight training as to not fatigue the body to much, and meditating every day without fail to give my brain and body a few moments of peace, calm and silence.  Will any of this work? I have no idea but it certainly cannot hurt to try.

 

Advertisements

THROWN FOR A LOOP WITH LUPUS

It has been entirely too long since the last time I updated and as I write down my thoughts now I’m not even sure how I feel or really what to write.  I have really been struggling since March of this year and trying to find the right combination. Summer rolled into my life and as the norm I was starting to feel better. The warmth and sunshine, as well as, the fresh air really can help a person feel good again.  I truly enjoyed my summer so much, with daily walks, teaching yoga, spending time with my family and especially my husband.

As we approached the end of summer I was starting to feel a little off again and had a lot of soreness in my hands and hips.  Luckily I had a doctor’s appointment coming up so I waited it out until then but found myself using over the counter Tylenol to help with the soreness. This is not a good long term solution and I do not recommend this, but it got me by for a short amount of time.  As I’m having this conversation with my doctor we trying to figure out if I’m actually on the right medication and what direction we should be taking.  I commented that I didn’t really like being on the Cellcept as it is an immune suppressant and I need my immune system to kick in sometimes so on days that I was feeling really tired and not myself I would go off my cellcept for a week and feel much better.  We determined that this medication was not for me. However, I can no longer stay on Plaquenil and prednisone alone anymore.  My disease is escalating to Lupus with Scleroderma and causing my hands to be extremely sore now without disjointed finger joints. I need to find something that actually combats my disease and Plaquenil is no longer my solution.

I’m waiting now to be approved for a biologic and hoping that it will actually combat my disease. Although it cannot reverse the damage that has already been caused by my disease, but hopefully it can decrease future damage.  The problem is getting approved for such a medication and then figuring out if it is the right one.  I have always known that dealing with autoimmune in any capacity is tricky and takes time, but over 14 years with this disease I actually feel as though I’m starting back at the beginning and running through trial and errors for my health.

As much as I love yoga and still teach it and do it, it is really hard on my joints.  I have not been weight training for the simple fact I cannot hold a weight in my hand.  The resistant bands have been working fairly well and I am able to use my own body weight but it is not the same as weight training.  Luckily I am able to walk and ride my bike with very little issues so I keep on moving.  I’m going to need a lot of time to figure this stuff out and taking the time I need with the patience it requires but it is not easy. I am also using Infra-red sauna therapy and I like that a lot. It reminds me of the days I was at Bikram yoga 5 days a week. Unfortunately I just don’t have that kind of time to commit to Bikram, but have thought long and hard about giving up regular yoga and teaching to resume a Bikram practice. I’m not there yet and I don’t know if Bikram would give what I’m looking for today, but it is in the back of my mind all the time.

 

WELCOME SUMMER

Today I woke up and felt a rush of energy as I realized it was the first day of summer. This is the longest day of the year and I have only been waiting for 9 months for this day to come.  I do love autumn as well so maybe 6 months is more like it but either way it is here.  My body enjoys the heat and humidity and I often tell people that my 3 favorite H’s are hazy, hot and humid.  Most people don’t believe me when I tell them but the reality is that our bodies and lungs like a little moisture in the air and my body in particular craves this weather and needs this warmth.  I can start to back off my Raynaud’s medications in the summer as my body is able to have more warmth and I spend more time outside getting vitamin D, as well as I just spend more time in the fresh air living life.

I rode in the Tour de Cure on June 11th and although it was 92 degrees I was ready to ride.  Tour de Cure is a ride for diabetes and even though I do not have diabetes, Type I diabetes is an autoimmune disease.  My thought is that any research done towards autoimmune disease is a win for the whole autoimmune community. The heavy hitters are Diabetes, Crones, Celiac, and MS.  As they come up with new equipment, medication and science based research for these autoimmune diseases they are likely to come up with some for other diseases.  I don’t know how much if any time, research, money and attention is given to MCTD but benefits are reaped when they can figure out what causes this disease.

Back to the ride, yes it was 92 degrees but we were riding along the ocean and the breeze was amazing.  I rode the 50K and at the end of this 50K I was ready to climb off that bike.  How does a body dealing with MCTD hold up under those circumstances? Let me start by saying I wear full biking gloves with a lot of padding in my palms.  I try to really relax my breathing and my mind before the ride although I did feel a little anxious at the start.  700 riders all take off together and for the first part I’m navigating other riders and drivers, but at the 7mile mark there is a rest stop and I keep going while everyone stops for a rest. This allows me time on the road with nature, quiet and myself to find my rhythm.  I’m not strong rider so the stronger ones leave the rest stop and catch up to me and maybe even pass depending on how strong they are, but I keep my pace.  I try and shake out my hands as often as I can and keep breathing steady.  At mile marker 26 my feet were completely dead, couldn’t feel them at all and needed to give them a break so on the next down hill I lifted off the seat and sat back behind the seat right in myhips and glutes, this allowed me lift my feet off my sneaker and give my toe pad a rest.  After that I was ready to go again, but my hands have almost no feeling left shifting gears becomes a challenge.  At the mile 32.3 or 50K there is a steep uphill to finish and I dropped my chain shifting to hard on the gears but I completely lost all working function of my hands.  I had crossed the fnish line and my chipped registered I was back from the ride and my husband came right down, helped me off my bike and walked it for me.  I had finished the ride with pride and was eager to eat a huge lunch.  A ride like that takes me 2 hours and 20minutes or an average of 14mph.  No records, but it is a ride not a race and I do it because I can.

There may come a time in my life when I am not able to do what I want when I want and if it comes I will deal with but right now even though I haven’t been feeling all that good since March I’m still able to dig deep and do what I need, what I want and do it when I want.  I did a lot of yoga after to stretch out and felt great the next day.  It did however take me 5 full days to get back on the bike but for those 5 days I was doing what I love which is walking and yoga.  I literally could and do walk every day and do my yoga when I can and still teach.  I would say all in all I’m doing well and waiting to see what this summer brings for fun, joy, and even good challenges.

MAKING THE NECESSARY CHANGE

I know I have not been updating a lot recently and have really fallen out of the blogging realm, but I have been trying to figure out my health since March and have had some real struggles which happens to most of us living with an autoimmune disease.  We might have several years of feeling like we have this under control only to wake up one morning and have our health take a downward spiral.  Luckily my disease is still offering my symptoms that I can live with meaning I’m still working every day, teaching my yoga classes and participating in life. The hard part is that I don’t have an ounce of energy left for anything else.  That is a probably for so many reasons but mostly because dealing with an autoimmune disease means we have to learning, studying, trying, trialing, succeeding and failing all the time and getting lazy about it doesn’t help anything.

I was faced with a choice for a medication change.  I could continue taking my medication but instead of taking 1 time a day on an empty stomach take it 2 times a day both have to be on an empty stomach.  This gives me an increased dose and spreads the doses out during the day in the hopes of being in my system longer and being more effective.  The other option is to try a new biologic drug on the market. This drug is the first FDA approved medication for Lupus & Mixed Connective Tissue Disease in 50 years.  Not since Plaquenil has a new drug been FDA approved. Well here we are.  Talk about trials and errors, since this drug is so new there is not enough long term research for this medication.  However, without people to try it how will we ever get the long term affect studies we need?  I say this but also know that I’m not in a desperate enough situation to be the guinea pig so I have to give this real thought and weigh all my options. I’m not 100% opposed to trying it out but need time to think about it as well.

The problem with the first option is that finding 2 times a day when your stomach is truly empty.  Morning is easy, but later in the day it gets harder.  I was thinking about this so much over this past weekend that it was stressing me out. I was feeling like a prisoner in my disease which I haven’t felt for so very long. I have been living with but also managing my MCTD for 14 years and now I feel stuck, a little afraid and frustrated.  I sat in the sauna thinking about all the years that I felt relatively pretty good. Remembering where my mind was, how my body felt, what I was doing on a daily basis.  I was a student of my disease, researching all the time, choosing health as my other full time job, trying different things all the time and journaling what worked and what didn’t.   I left that sauna knowing that I was becoming a student again.  I got out my books, journal, notes and started to study.  Cleaned the pantry and cleaned the fridge and starting new.  It will take some time to figure this out but I have time, in fact I have let the last year go by being a bit lazy about my health.  The focus begins again and process is about to start over.   I am going to embark on the AIP – Autoimmune Protocol in order to get my body and mind back to base-line.  The AIP is a regiment of nutrition, exercise, meditation, medication (if prescribed by your doctor), sleep, and stress management.  It is strict, it is not easy to adapt, but once the body is back to base-line then the healing, transformation, and new normal can begin.

I have the support of my husband and feel grateful for his strength as I sort this out. I do a lot of talking out loud and even crying and yelling which he unfortunately gets caught in the middle of, but sometimes it just takes his quiet demeanor to keep me in check.  Together we will figure this out with the help of other resources as well.

WINTER BLUES

It has been a rough winter, both physically and emotionally.  I finally got back on the road to health after my encounters with a few flares and now I reside at 40 days without flare-up. A far cry from where I was but I have to meet myself where I am right now. I teach this in all my yoga classes since every time someone walks into the studio they need to climb on their mat as though they are climbing on for the first time without judgement or expectation.  I’m in a place in my health where I need to take my own advice and meet me where I am without judgement or expectation.  What worked for me a year ago or even a few months ago may not be what will work for me going forward.  This is where I start over and re-evaluate my health and my approach.

One of my goals is to go back to basics and work on doing the best I can every day with what my body has to offer. This means a lot of walking again, keeping up my daily yoga practice and teaching, some spinning, very little weight training (only due to the sore in my joints, not because of muscle issues) and eating as healthy as I can.  Here is where I find myself stuck, I know exactly what needs to be done, I have been doing this for 14 years, I give advice to other people about what they could try and yet I find myself in a circle of fatigue and needing convenience. There is a balance and finding the balance is the focus, finding the will and strength to push through long enough to find the balance is the struggle.  This is probably why I have been dealing with flares off and on all winter.  Every time I make some headway my fatigue and body get in my way.

So my first step is to get back outside and walk in the fresh air as much as possible. Obviously the temp has to be high 30’s F or greater for this to happen but believe it or not we have had a several day.  While the rest of the US is looking at spring in a couple of weeks it can be end of April before we really experience spring in Maine so I grab any mild day I can and just bundle up and walk.  My body and soul actually feel great and I find myself smiling each walk I finish.  This doesn’t mean I cannot walk inside it just means I prefer not to.  I’m being tested and just have to take each day as a new day and figure out what I need that day. Sometimes I choose correctly, but sometimes I don’t.  Even after all these years I’m still trying to find the balance that works.

HAPPY NEW YEAR

I woke up this morning and realized I’m at 225 days without a flare so this is a great start to the new year. We don’t have to wait until New Year’s Day to make changes in our lives or set goals but it seems easier to do so when it seems the slate has been cleaned and the new year ahead is full of opportunities. I started my day by teaching a yoga class and I started by saying I think we should ease into the new year and what I heard back was no bring it. Most people are tired New Year’s Day, most people haven’t been sleeping enough, eating out of the ordinary, drinking more than they normally would and we should probably all let our bodies rest but instead we wake up on the first day of the new year and want to be challenged. Whether in a spin class, a new facebook challenge, or even a yoga class. We want that push to get us started in the new year right. We all look for this, but what is the drive? I don’t have the answer to this question as I’m still trying to figure out what drives me to do all I do, and try all the things I try. The people around me wonder where my energy comes from, where my drive comes from and what my boundary is. The only thing I know for certain is that I do as much as I can on days that I feel good because it isn’t every day that my body is running at 85% and never at 100% these days, but I do what I do because I can. If you have been with me since the beginning there was a time when I couldn’t walk and with therapy walking 2000 steps a day was a chore and took all day, now I hit 10,000 steps usually by noon, because my legs work, because my body functions. I do hours of yoga because I have the strength in my arms, elbows and wrists. I do what I do because I have worked to get here and part of me is afraid it could be taken away at any moment. I live in the now as best as I can, but there is a lingering fear that my body could and probably will some day long from now not do what it does today. I believe I will always be able to walk and I will always be able to do yoga. That is where I put my focus, but I’m crazy about spinning. I’m crazy about trying new things, and I’m crazy about succeeding.

I don’t know what this New Year will bring, but I am open to all the events that come my way. I know I will not like everything that I’m faced with this year, but I will face anything with calm, peace and grace. I will continue to encourage all of my yoga students to do the same and challenge them as they need and let them rest when they must without judgment. Happy New Year to you all and hope your year brings you health, happiness, and peace and may this year bring you everything you need.

HEALTHY BODY, HEALTHY MIND, HAPPY HOLIDAYS

I haven’t written in a while but have not had a lot to write about. This is a good thing actually because it means that things in my life are relativity in balance. The point of this blog is to tell my story about MCTD but that story is very much the same day after day. I’m at 217 days without a flare which is wonderful and I’m very grateful that my body is feeling good. I am still working out every single day whether it means walking, spinning, or weight training. My yoga practice is a daily adventure whether it is my own practice, preparing for yoga classes, or teaching. My body is strong and most days I feel like my mind is strong. However, this time of year the days are short and it is dark when I go to work and it is dark when I get home. This time of year can be stressful for some people and even bring on depression. We are rushing from place to place, trying to prepare for events, eating and drinking more than we might normally, sleeping less than our bodies need and feeling the stress throughout our bodies and minds. Many people are rushing around so much that their immune systems wear out and illness takes over. I live with MCTD therefore I have a “super-immune system” I don’t worry about the common cold or flu. I don’t worry about picking up germs from the places I go. I enter a gym atmosphere nearly every day, which other than an airport might be one of the germiest places on earth. What I worry about is running my body too hard and putting myself into flare.

This time of year we must make choices, and they won’t all be easy. I thought I would write about some of the things I do in order to stay flare-up free during the holidays and winter months. I am not saying I don’t or won’t flare during the holidays or winter months but I try to keep things quiet in order to stay flare-up free for as long as possible. In Maine our winter started several weeks ago and will take us into April. It is long, it is cold, it is hard to endure sometimes. The way I get through this time is simply one day at a day time. Each day when I wake I take inventory of how I am feeling and then decide what my body needs. I will do something every day even on days I wake up a with some fatigue. I can always walk, as long as my legs will move, I can walk. I find some days it is actually easier to walk than to do yoga. Even if I choose restorative yoga because my body doesn’t always want to bend and move in certain postures.

This time of year we are invited to many events as most of you are, until I was diagnosed with MCTD I rarely said no to things even when I should have. For the last 13 years I say yes to the things that most important to me and my husband. Our families will always be high on the list and if I can help it we do not turn down family events. I also choose 1 evening event a week, this way I’m not out late 2 nights a week. We may do something Friday night and something Sunday during the day but not two late nights. This ensures that my body receives the adequate rest and sleep that it needs. I’m not hyper vigilante about what I eat this time of year except that I make stuff I really want. On Dec 26th that is when I go back to being hyper vigilante with my eating and drinking and let my body fully recover. By New Year’s I am not looking to go out or make resolutions I’m looking to start my new year fresh, clean and re-offer my body everything it needs. Think of it as a back to body basics cleanse.

I meditate a lot this time year. I take minutes in the morning to reflect on the day ahead and things I might have done differently yesterday. Not with anger, or regret, but as ways to learn and do better today. I take minutes to watch my thoughts, make my thoughts cleaner, and notice days when I really don’t have a lot of thoughts. I take this time for me, the time in my life that truly belongs to me, not my family, not my work, not my yoga, not my trainer, not my spin instructor, truly just me, only me. Minutes, not several minutes or an hour, minutes in my day.

This holiday season is going to look different to each and every person, but my goal in this holiday season is to capture the joy, love, peace and calm that it brings. Happy Holidays to all.