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.
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.
With winter around the corner my body is starting to feel it and react to it. What happens with my body in the winter months? My Raynaud’s is in full gear which makes it hard to feel my fingers and toes, as well my hands are more swollen in the winter months which means I have trouble making a fist or able to grip objects. In my weight training class I noticed that my grip was not strong enough to hold my regular weights. This means I need to weight down, or use a less weight and do more reps. I recommend anyone else that lifts weights and have these issues make sure you are talking to your trainer about what happens to your own body when winter is near. I also suggest being very kind with your words and not being too judgmental with yourself. It is perfectly fine to use a lesser weight at any time that your body is not feeling a 100%. At my weight training session I tried using my regular weight but quickly realized that was not a great idea so I was honest with my trainer and said that my grip and muscles just couldn’t do it. What I did in the weight training room last time is not indicative of what I have to do each time. I must listen to my body and do what is appropriate at that moment for that day.
This is the same thing I teach in my yoga classes that each time a student walks into the yoga studio it is a new day and working with what you have on that day is the most important thing. Again, without judgment and without stress. It is much harder to use this philosophy with myself and so much easier to offer this compassion to others, but the truth is if I’m not honest about my capabilities I could really end up hurting myself and not being able to lift weights at all for several weeks. I need the weight training to keep my body strong. My body loses muscle mass quickly with the MCTD and age so weight training regularly is a must. I do use straps as well to help me grip heavier weights but also do not find shame in powering down and turning my weight training session into a success.
I do find that my body might not be as sore the next day with less weight and more reps but I do know that it is still working and keeping my body strong through the winter months. There will be times this winter when my body will feel great and my hands will be ok to lift heavier weight and on those days I will take full advantage, and on days when my grip just isn’t there or my joints don’t feel up to it then I will modify and luckily I have a trainer that understands and makes the modifications easy and doable for my sessions. Only 6 months and ticking down to when the weather turns warm again and my body feels better on a regular basis. This time of year is also when I need to be very diligent about my eating and sleeping to ensure that I’m allowing my body to have every fighting chance.
Just another couple of days until Christmas and truly my body is feeling the effects of lots of eating, chatting and being off schedule. I am ready to have the holidays come and go so I can get back to my regular routine. As I have written in many past blogs I do not partake in the alcoholic beverages since it really can put me into flare quickly and without much effort. I am 178 days without a flare and not about to get one now when my body is already tired and teetering on the edge of exhaustion. However, I have been walking more do try and combat the terrible eating I’m doing. Yes I’m keeping it gluten free but not sugar free and it has really worn me down. My yoga practice is great and I have also been able to find myself in the Bikram studio for some warmth so I’m happy with the way my body is performing just wish I wasn’t so tired.
Weekly stats – 97,725
Daily – 13,104
Miles – 36.46
Floors – 141
Hope you all enjoy a safe holiday season and that your bodies are holding up
As many of you know I don’t post recipes often because quite frankly there are so many blogs, websites and Pinterest sites that provide every recipe you can imagine or want. However, sometimes I even surprise myself and come up with a must share recipe. Quick back ground, last week a friend introduced me to Barney Butter which is this delightful almond butter made with cocoa and coconut oil, which you can find in your local stores or on line and perhaps that is the easiest way to enjoy this delightful creation of “Nutella” for adults. There is no hazelnut but just having a cocoa flavor, clean nut, spread for apples, vegetables, seed crackers or whatever you would normally put almond butter on. After trying this little tub of yummy goodness, and it is little, I had my husband try it and he looked at me so seriously with those confident eyes and said “this is good but you can make it better.” My husband truly has the most faith in me and knows that if it can be bought in a store then I can make it at home, better, cleaner, and less expensive so the gallant has been thrown, the challenge was on, and I was ready.
This weekend I think I came up with the perfect concoction of almond, coconut, cocoa and shared it with husband who said now that is truly a “Nutella for adults” shot, score, win in a matter of moments. So if you are so inclined and want to try this recipe, here it is and since I’m not a baker, chef, or food blogger this is my version without bells and whistles but my husband did think that having a picture or 2 were imperative so here it is and feel free to share with anyone you think would like it, or makes their own food. I think making your own food anytime you can is the best bang for your buck but we all don’t have a lot of time, patients or will to make food at home. I learn by making mistakes and I make a lot of mistakes in the kitchen so if your first batch doesn’t turn out like you thought, keep trying.
3 cups raw almonds
¼ cup coconut oil
2 Tbsp. cocoa powder
1 quick dash of maple syrup
- Preheat oven to 300
- On cookie sheet put the almonds
- Cover in coconut oil and add salt
- Roast the almonds to your liking, I want mine still moist so they cream well and take them out of the oven once I start to really smell them. Est time is about 30 minutes
- Cool briefly and add almonds to a food processor, or heavy duty blender if you wish
- Grind almonds and continually scrap the sides and be patient this is a long process
- Once the almonds start to cream add the cocoa powder and just a quick dash of maple syrup. This sweetness is to cut the bitterness of cocoa powder
- If you want it thinner or creamier you can slowly add in more liquid coconut oil. I had warmed a little bit and had it ready if I needed it but did not use it.
- Remove and add to your favorite Mason jar or container and eat anytime.
On Sunday my husband and I decided to go to brunch because we hadn’t eaten out since our vacation several weeks ago and do enjoy going out every once in a while for either brunch or dinner but really brunch is our favorite. He picked the place which was this adorable little place in the Old Port Portland area. We walked in and the place was small and the food smelled so good. We were seated right away and didn’t arrive terribly hungry so we were able to contain ourselves for a minute while we sipped hot coffee planning our brunch in a strategic manner. They had an entire page of different meats and cheeses so my husband ordered some of his favorite meats and we nibbled happily away on them. This is a place that makes home-made donuts to order so they come out piping hot but both of us were able to resist such treats and went to order our meals. We were looking at the different egg combinations, hash combinations and feeling pretty good about having a gluten-free brunch. Until I saw it, right there on the menu, front and center; orange hazelnut butter brioche French toast with Maine maple syrup. Sold to the highest bidder which happened to me at that time and our table. My husband took my cue that gluten-free did not have to pertain to this meal on this day with this beautiful lady sitting across from him so he proceeded to order Eggs benedict on brioche bread.
A little more coffee, some delicious food, and amazing company and this couple was in state of true satisfaction and contentment. Everything was fine and dandy as we left this little bistro every happy and extremely full. We went about our day and into the evening things changed and changed quickly. My joints were starting to stiffen, my body felt so tired, and my mind was in a fog. My husband just looked at me and said that is what gluten will do. I couldn’t believe it happened in the same day. I didn’t even have a chance to journal about our fabulous brunch before I was feeling the effects. My husband started feeling the effects later with some uneasy full feelings that lasted way into the evening and neither of us slept well. Yesterday morning we woke up and I did get up to do my exercise routine and yoga routine because I really have to not feel well to skip my routine so I continued about my morning but when he asked me how I was feeling the truth was I was still feeling pretty lethargic and my joints were still really stiff this morning. If the effects can happen that fast they should go away just as fast but it doesn’t work that way. Neither of us have been diagnosed with any intolerance to gluten but the longer we go without eating it the harder the effects are when we do so we are normally really conscience about it and just let our guards down the other day. Have we learned our lesson? Honestly no, probably not but the next time when it is several weeks or even months from now we will probably be reminded just as quickly how much better off we are when we stick with proteins and fats and have our starches in the form of vegetables, white rice and potatoes. The lessons of life can hit you like a brick in the stomach literally or gentle reminders to be mindful about what you eat and drink and know the consequences of each and every action. We are still learning.
We are a couple weeks into the New Year and you might find yourself saturated with the word detox. I know I am hearing that word in casual conversation, seeing posters about the newest detox, join the 14 day detox, people at the gym sipping on their juices because they are detoxing and when I hear this I don’t know what to think. As a society we spend the last part of the year abusing our bodies so we can detox them when the New Year starts. What does detox really do for the body? Is it possible that the detox itself can be stressful to the body? What constitutes a detox program and what really works? We are so focused on our goals which by the way is not a bad thing but are we willing to go to extremes and is that bad?
I bring this up because I was recently approached to try a detox program and here is my thought on the whole thing. By the way I am not looking to lose weight but like everyone I did a fair amount of abusing my body between Thanksgiving and New Year’s so my body could literally receive food at any moment without feeling hungry. In fact I laugh and say that I have not felt hunger since before Thanksgiving because there is so much food around during the holidays that I’m tasting something and never feeling hunger pangs. With that abuse comes the mind and body addiction associated with so much food and always eating. Not to mention that my sleep patterns had changed due to what I was eating and to be honest I don’t go off the rails that much but even a little can set me back.
So, on January 2 I had to make the decision to get back to regular eating and regular sleep in that order because once my eating was back to normal my sleep would follow. My exercise was a constant the whole time so I didn’t have to add that to my routine.
It only took a few days of clean eating for my sleep to go back to normal and actually make my workouts feel stronger again. My weight training sessions were stronger and my spinning was stronger. I spend a lot of time on my yoga mat but even my focus was better while I was there. Analyzing what it means to detox and looking at different programs, I did my own detox but without giving up any food. I know that many of the detox programs offer “enough calories” because you are drinking so much juice or other liquids but is that kind of detox un-necessary stress on the body? All of us are faced with stressors throughout our day and should we be adding a stress of very little food after gorging for so many weeks during the holidays? I don’t have the answers and I don’t use the word detox when I’m talking to people but I just say I got back on track right after the new year and everything is back to normal for me. At that point they can decipher what that means.
I don’t walk in anyone’s shoes but my own and each day I am trying to make my body a little stronger so I need to eat real food and honestly I eat a lot. I wouldn’t say that I have felt hunger pangs yet this year but I’m not in that constant mode of eating either. I fuel regularly and based on what my day has in store. If I know I’m going into a stressful day I try to not add that that stress by worrying about my food or lack thereof. I have cleaned my cupboards and anything I want to eat is suitable to me again. There will always be times when I will run up against temptations and wouldn’t be human if I didn’t but when I feel strong and see progress with my yoga practice and weight training abilities it sure makes those temptations less. Also those temptations have to be pretty special, but they will arise again.
You may be doing your own detox and actually feeling good so if that is the case than I urge you to do what feels right for you. If you are feeling stressed with your detox maybe rethink it as stress is a big trigger for MCTD flares and you don’t want to inadvertently cause a flare while “doing something good” for yourself. As the year moves forward it is important to take care of your mind and body and soothing your soul. Just a side note I am still meditating each and every day sometimes with success sometimes not. A reader suggested I try honest guys and I did. I would recommend them to others as well. I don’t use it regularly because I really like picking a song off of a CD and just getting lost in my breath and the music but if I need some help I will turn to them. The meditation is my 2015 commitment and one of my favorites. Every year I pick goals that require me to do more and this goal is unique in the fact that I do less. I just need to sit quietly by myself for a few minutes each day.