A New Month, But Same Season

We have rolled into February and although it is a short month it seems so long. About the time we get to February and especially March in Maine I’m completely over the thought of winter. However, that does not make a bit of difference. I still have a few months left to endure of cold, snow, sever Raynaud’s, cold bones, and achy joints.

I am 5 injections into my new medication and the last injection did not come with any symptoms.  I was getting flu symptoms 2 days after my injection, but this time there was no flu, no fever, no symptoms of any sort.  I am getting better with the actual injection part as well and there is no pain.  This is much easier than I thought it was going be.  I’m trying to wake up every morning and do a quick analysis of how I feel and journal.  My hope is that I will start to notice some less stiffness or maybe even some less achy joints.  The worst part is when I first wake up, but it only last a few minutes. By the time I’m ready for my workout my body is ready to go.

I have been really focusing on my weight training this new year in hopes that if I can build muscle and take this new medication perhaps I will not flare as easily when my body goes into healing mode to build my muscles.  It seems so counterintuitive to weight training and flare while I heal, but I also know I need the weight training and the strong muscles to keep strong and healthy.  I’m only 32 days without a flare, so not that long, but my hope is that with this new medication I can increase my days without a flare to many, many more.


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.

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.



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.



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.


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.


After my meeting with the student panel on March 22 I woke up that next morning with a tender pointer finger.  I didn’t know if I had bumped it or if having all those hands touch me the day before if my hands and fingers were just sore or if something else was going on.  Friday morning I woke with a full infection in my finger, my whole body was aching from pain and I was so sick I couldn’t keep water in my system.  I immediately went to the doctor and found out I had a scleroderma ulcer.  How I got it I have no idea but it is a long road to recovery.  My hands were so swollen and sore, my whole body was working overtime to take care of this infection and since I take an immune suppressor I had no immune system to fight with.

I got an antibiotic and stopped taking my immune suppressor immediately and that was nearly 3 weeks ago.  I didn’t know I had scleroderma and honestly I might not but with Raynaud’s as a secondary disease vs. a primary disease I run the potential of having these scleroderma ulcer issues and now I know I’m far better off to try and prevent them instead of heal them.  It takes a very long time to heal one of these ulcers and the pain that goes along with the ulcer is more than I am used to.  I deal with a certain level of pain everyday but it is manageable this was so extreme it made me very sick.

How do you prevent these types of ulcers you might ask? I’m still researching and digging into this subject. Keeping the hands as warm as possible is a key ingredient but that is a key to having Raynaud’s in general so in this case it was not enough.  There is also a need to keep a fair amount of blood flow and being able to open those vessels.  I’m in the process of using a higher dose calcium blocker to get blood rushing through the body but it doesn’t make me feel great and leaves me with some annoying headaches so my hope is I can use the higher dose while I heal and then use the lower dose which doesn’t make me feel weird the rest of the time. I used to only use it in the winter but may need a little all year long.  I’m also going back to hot yoga several times a week. I teach in a regular studio and although yoga is good for circulation I think the hot studio helps me a little more. I’m still teaching but looking at teaching in a warmer environment.  I love teaching yoga but I also know that I need to do some self-focus so I am not teaching as much as I like and going back to being a regular student.  I have also gone back to daily meditation as a way to breathe deep and take some time to reflect on my life and my situation.  It is a work in progress every single day and some days I feel better than others. Some days I have been feeling very frustrated and some days I have been feeling totally exhausted.  Those days of exhaustion I am taking care but I am still walking and doing yoga every day even if I don’t necessarily feel like it. I will write some more about techniques I’m trying and how they are working as I go through the process.