Category Archives: Diet

Second Injection Success

My second injection was Wednesday and I was pondering between doing it in the morning or in the evening. Benefits to both for my schedule, however, my husband had an early appointment which meant I had the house to myself for the morning. I decided I would do it alone since this was my first time doing it myself without the nurse’s supervision.  The injection went well, no issues, pretty un-eventful and no pain. Just the tiniest bit of burning as the medication enters my leg, but more like a hotness not really burning.

Totally successful and on my way to start my day.  The whole day went well, regular exercise and eating and basically forgot I had even had the injection.   Woke up Thursday morning and felt fine.  Got up did some walking and yoga, had no bruising and carried on throughout my day with no issues what so ever.  Fast forward to this morning. I woke up at 3am with a fever, sore throat and pain in my neck and back.  It felt like a flare was coming, but I didn’t have the shakes and there was no pain in my hands, wrists, elbows, feet, legs or face.  This was not a flare, but rather maybe a sign that my body was getting used to the medication as I was not have other flu symptoms and once I got up and around the symptoms I did have were decreasing.

At this point, still late morning and still have a fever and sore throat but the other symptoms are gone.  Maybe next week the symptoms will decrease a little more. I’m sure having this medication go into body is just causing my immune system to take notice and make sure nothing to serious is going on.  I would say this was successful.  The good news is I have 50 more chances this year to take notice and analyze.   I’m still very conscience of what I’m eating although I have only be strict for 19 days as I started first of the year, but even with a few weeks of clean eating, more sleeping, exercising, and meditating I feel a little better each day and feel like I’m managing my MCTD/Lupus a little more each day as well.

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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.

 

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.

WINTER IS AROUND THE CORNER

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.

WEEKLY STATS

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

“NUTELLA” FOR ADULTS

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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.

 

Ingredients

3 cups raw almonds

¼ cup coconut oil

Salt

2 Tbsp. cocoa powder

1 quick dash of maple syrup

 

Instructions

  1. Preheat oven to 300
  2. On cookie sheet put the almonds
  3. Cover in coconut oil and add salt
  4. 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
  5. Cool briefly and add almonds to a food processor, or heavy duty blender if you wish
  6. Grind almonds and continually scrap the sides and be patient this is a long process
  7. 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
  8. 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.
  9. Remove and add to your favorite Mason jar or container and eat anytime.