Category Archives: Meditation

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.

 

SCLERODERMA ULCERS

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.

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.

MY FIRST FLOAT

I did my first float last night and wanted to describe in detail what that experience was like for me.  First, let me start by discussing what floating is and how I got interested in the first place.  I have been listening to a lot of podcasts over the years and the term floating comes up quite a bit.  Float tanks are sensory reduction tanks in which you climb into a pod (or something similar) that has 12 inches of water and 1200 lbs. of Epsom salt.  The idea is that you float on your back and feel completely weightless as though you are floating in space. It is typically dark and quiet to let your mind and body completely relax.  I will back up a little bit more for a moment.  Years ago my doctor had mentioned that when my joints and body were really stiff, sore and swollen that taking baths with Epsom salt would be beneficial since Epsom is so good for arthritic pain.  The caveat is that all that salt is not necessarily great for septic systems so I used this technique when my body really needed.  The idea that these tanks have 1200 lbs. of Epsom salt make them wonderful for pain in general, back pain, neck pain, joint pain, muscle soreness and other types of pain.

I did some research and found a place near my home to try out a tank.  They have pods or a room. Last night was my first visit but won’t be my last.  I was in a pod and will try a room next time.  My experience starts with a lovely couple at the front desk that are more than welcoming and really take time with me since this is my first visit.  There is a short video you watch and waiver to sign.  They explain to me that I can choose a light color and music track.  I have also thought that you enter these things in the pitch black and complete silence. They explain that I can turn this all off but for the first visit I may want light, music, or both. They take me to my room and inside the room is a shower, pod and filtration system.  They explain that I will need to shower first to ensure that I do not have any makeup, location, perfume or anything else on my body or hair and the I climb into the pod.

There is a huge lid that I closed when I climb in and the pod is big enough to sit up in so it is not like a tanning bed which I originally had thought.  I pull the lid down and lie back. I instantly start to float and try to relax. My body did not relax at first and felt my neck and back tighten up as though I had to keep myself a float instead of just letting go and letting the water hold me.  If you have ever tried to totally relax in a savanssana yoga pose it is very difficult and this was too.  I turned off the light and music and realize it was pitch black and completely silent.  I got a little un-easy so I turned on the music but left the light off.  You are in there for 90 minutes but obviously you have no idea how long you have been in there until the voice tells you that your float is complete. I did eventually start to relax and even dosed off for a brief moment but I don’t think I could actually sleep in the pod.  At some moment in my float my body felt cold and I got distracted so I tried to warm back up but instead decided to cut my float short and jump in the hot shower.  I turned back on my light and sat up in the pod. I did some stretches then climbed out to a hot shower. As it turns out I only cut my float short by 5 minutes so for 85 minutes things were comfortable and relaxing.

I explained to the couple that I got cold and they said they would make a note on my account for a little warmer water and also suggested that I try the room next time since it stays a little warmer naturally.  Also, I’ll be careful next time to not take a warm shower but try and endure a cold shower so the water will feel warmer as well.  My body runs cold and with my Raynaud’s I really don’t like feeling cold, but I did like the experience enough to try it again and see how I do.

When I went in my hips and lower back were very sore. I have been limping just slightly due to hip pain I have encountered since our move. I think hauling heavy boxes, walking lots of stairs and not being able to really rest and relax have caused my body pain and fatigue.  When I left the float place my body felt great and I slept really well.  I woke up this morning feeling really good as well, and then headed out for my walk. By the time I had finished my walk, my hips were hurting again and I had that slight limp.  I need to watch this and try and fix it and just perhaps floating, massage, yoga and general rest are just what I need.

 

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.