Category Archives: Stress

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.

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.

THIS THING CALLED LIFE

I realized last night that it has been an entire month since I sent out a blog post and honestly last night was the first time I even thought about it.  This crazy thing called life has gotten in the way.  I don’t mean this in a negative way because even when things are good, life can get in the way.  My husband and I are making a move after 17 years and you just realize how much work is involved.  My body and mind are not able to rest even for a minute these days but because there is always so much to think about, to do, to discuss and to re-evaluate.

This morning was my first time back to weight training in over a month and half.  I figured I was getting my weight training from packing boxes and moving them to storage, but this morning I was reminded that when you don’t use your muscles they will fatigue incredibly quickly.  It won’t take long for the muscle memory to return and I feel strong again and honestly I haven’t run into any boxes I couldn’t lift and haul so I think my strength is there I’m just using it differently.  I also decreased my prednisone to 4.5mg about 3 weeks ago. I wasn’t sure if with the extra fatigue and stress my body would allow the switch from 5 to 4.5 but I can say that things are going pretty well with.  My doctor wanted me to start to ween off since I have been on the Cellcept now for 3 months.  He is hurrying me to get off of it but I figured I would try a small dose reduction and try another one after we move if my body feels ready.

I did some meditating this morning for the first time since we started this whole life change back in April.  Everyone says that this is the time to meditate the most but I was feeling like things had to give, I had to give up many things and that was one of them. I also started walking every morning to conserve some energy to get me through my work days and do yoga whenever I’m teaching but I don’t have my own practice right now. We are about 2 weeks from moving in our new home, starting our new life and making new memories in a new place and I’m hoping that once we get moved in and settled we will find that tranquility life I crave.  I wouldn’t change what is happening right now in our lives I just wish we were at the end of this journey.  Every journey has its struggles and challenges and also its joyous events but all these things cause stress and as we know stress is my biggest trigger and usually the biggest trigger for most of us with autoimmune diseases.  I am at 62 days without a flare today and feeling really good about that.  My husband is constantly reminding me to breath and rest but my hope is to finally find some real sleep in my very near future.

I am too close to the situation to see when I really need to take a breath and relax . I give people advice all the time but it is very hard to take my own advice.  My plan for the next couple of weeks is to get back to my regular routine, walking, my personal yoga practice, weight training and meditation so this morning I was able to get my weight training session and meditation session in. That felt really good.

CHECKING BACK IN

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

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

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

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

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

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

WEEKLY STATS

As you can see by my stats I have increased my walking activity to 10k steps a day.  I am having a hard time balancing the hours of yoga needed for teaching with the activity that my body and mind desire in the form of walking, spinning and weight training.  I have started my mornings a little early in order to fit in some cardio or weight training before my yoga.  As I make this change I still need to be very conscience of the time I need for real sleep and rest.  Life is a balancing act and sometimes I have it dialed and sometimes life shifts and I get a little unbalanced. I am honestly feeling a little unbalanced right now but I love teaching yoga so much and not willing to give up that part.  As winter gets here and things slow down in my real career I will find those moments of enjoying life in a balanced manner.  Good news is that I’m still weight training and actually had my session first thing this morning so that is out of the way and able to teach yoga this afternoon so both are getting accomplished today.

 

Weekly – 76, 741

Daily – 10,963

Miles – 29.82

Floors – 193

 

Hope you are all continuing to survive the holiday season and find your own balance in life.

TRAVELER’S FATIGUE

Everyone in my office environment is suffering from some sort of running nose, watery eye phenomenon but some call it a cold others call it allergies and who really knows? Last week I traveled clear across the country from Portland Maine to Vancouver BC and it was one of the longest trips I have taken in sometime. I was on 2 airplanes for more than 12 hours and my body was stiff and sore when I got off the plane out west. I did yoga that same night and each morning thereafter until I returned home. When I got home my body was so stiff and sore that I have been doing a mixture of Yin yoga with Vinyassa to get the kinks out and also doing some massage therapy. My body and mind feel utterly exhausted. My thoughts are scattered and I while sitting up meditating I actually fell asleep one morning. I have been trying to walk, do a lot of yoga and lay off the weight training until my body has the strength to perform normally again.

I have been doing some reading and writing but like now just typing out this blog is taking me longer than usual as I’m fighting foggy brain and forgetting my words. Last night my skin was hurting and my body was so sore but my husband mentioned that I had glassy eyes also. I said oh I think it is either a cold or allergies. He said it was traveler’s fatigue. Interesting, traveler’s fatigue, I believe he just may be right. The symptoms are similar to what other people in the office are facing but because I don’t get office bugs but once a year and have never had allergies I think he might have nailed my diagnosis. I have never really done well with traveling and doing a long distance stint like that was fairly grueling. Coming back and losing the 3 hours seemed to be more difficult but it could all be mental and both ways are just as difficult.

When I got home I went to one yoga session at the studio but realize my body needed more restorative yoga and that is when I turned to Yin. I have been doing Yin now every day since my arrival home, but fitting in some sessions of vinyassa just to remind my body and mind that I can in fact do this and although it will take some time to get back to base line I am willing to do everything needed to get there as well as wait as long as it takes. It all goes back to listening closely to what the body needs and what mine needs right now is rest. Walking seems to be working fairly well and even doing a few minutes of walking meditation at lunch time are helping. The weather has turned a corner here in Maine so getting fresh air outside and some vitamin D is also helping. All these things add up to getting back to base line as quickly as possible without pushing too hard, too fast and expecting too much.

OVER 200 DAYS

As you most of you are aware if you have been reading my blog for any length of time I journal every day so I can keep track of how many days since my last flare. I am excited to say I am over 200 days, 202 to be exact. Granted just slightly over 200 but I made it. I wouldn’t say that every day I feel like a rock star but I for 202 days I haven’t had to nurse a flare. I feel very thankful for each and every day that passes without a flare but there are some record numbers for me and 200 is turning into a record day. I was over a year before my last one so I would very much enjoy getting to a year again. However, with MCTD and flares it is a day by day thing so I might flare tomorrow but at least I have these 202 days to fall back on and know I can get there.

To put it in perspective, I have hit being flare-up free 90 days exactly 3 times in the last 11 years, 200 days 2 times now, and 1 year or 365 days just once in 11 years. My periods of being flare-up free are increasing each time. It takes me a little longer to recover from a flare after I have one. I just have to take it day by day and not worry about when the flare comes because it isn’t a matter of “if” just “when” and when it does I will be ready to take care of myself. Recover as long as necessary and start the process all over again.

Right now it has been over 200 days since I had to recover from a flare and since so much time goes by I really don’t think about it but I notice immediately if my fatigue levels increases I treat my body with kindness. As well, with my meditation and yoga I am really able to keep my stress levels down so I know that is helping and will continue to help. I made a job change in the winter which allows me the opportunity to really leave my work at work and not bring it into our house-hold which is great for me, good my husband and allows our home to be the tranquility, safe place it needs to be. Stress is by far the number one trigger for most people because our bodies and minds can only handle so much and we tend to push further then we should so our bodies stop us by flaring, or giving us the cold or flu, or just drops us like rocks until we rest. The idea is moderate what happens every day with your body so you can recognize what it needs when it needs so we don’t flare or drop like rocks and for our super immune systems get sick if we do. I don’t tend to get sick because my immune system is so strong but it doesn’t mean my body stops me in my tracks either.

I’m still learning to read all the signs but when I was doing yoga the other day and having trouble with a posture that I could so easily do just the day before my husband commented that I am really getting in-tune with my body. I thought I was already really in-tune with my body and I might have been but he sees that knowledge growing and he sees me not reacting as though I should be able to do something but doing what I’m able right now which is very different. I’m learning, listening, recognizing, reacting, and journaling.