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.
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.
This post will lead to more posts coming in the near future and although I have so much to write I will try and keep it simple and to the most exciting details. I was invited to our local college to meet with 180 medical students, who may or may not end up following a path into Rheumatology but either way they will be in the medical field in some capacity. I was 1 of 10 patients with an autoimmune disease. A couple of us were considered rare, a few would have visible clues, a few would be considered more common with or without visible clues. Each patient sat a table with 9 students. The students could ask us any questions about our situation but could not ask what we had. They could ask for lab results and could do examinations, but they only had 10 minutes. It was really interesting to hear the questions that they would ask, and also how quickly they were willing to make a diagnosis, but would be wrong. I was having a rather bad Raynaud’s day so they all looked at my hands and feet and could tell immediately the issue there, but they had to decipher if it was a primary or secondary disease. Mine is secondary.
The students could ask me what medications I take and when. I learned very quickly that I only know my medications by their long names and students only know the medication by the generic chemical name. The obvious one that we all knew by its original name was prednisone. I was able to tell them what the medication was intended for and then let them know that some had made their way into the Rheumatology realm over time. Such as, Cellcept is actually a medication given to organ transplant patients to help them accept the new organ easier. That wouldn’t make much sense to a student unless you also knew that it was an immune suppressant. Plaquenil was first design to help with Malaria but has been used in autoimmune cases since the late 70’s. There are all kinds of names for calcium blockers but not all calcium blockers are used for high blood pressure. I was able to educate for a few hours and tell my story in the hopes that these future doctors made good decisions for their complicated future patients.
After a 4 hours and 180 students asked me questions, looked at my hands and feet and made their own diagnosis only 2 students were correct in diagnosing me with MCTD. Many had never even heard of MCTD and lucky for them the next week’s curriculum was going to be about Lupus, Scleroderma, and MCTD. Some of the patients’ diseases they were able to come up easily and quickly but they were cautioned to not make a quick decision because some autoimmune look like one thing but are really something else and many times patients get bounced from doctor to doctor trying to come up with the best plan of action when they haven’t even been diagnosed correctly.
The students were told of patient’s stories where they spent years going to different doctors trying to figure it out and spent years and years just taking care of symptoms instead of the root cause disease. I was able to explain that the Rheumatologist I was sent to spent a lot of time with me and diagnosed me fairly quickly but that it was the years spent after working together to manage the disease. I also know that I was extremely blessed and this is not the norm for many people suffering from autoimmune but if our future doctors are willing to take a little extra time to get it right then the managing can start a lot sooner which benefits everyone.
It was such a great experience. I hope to be asked back again and since the next time I will know what to expect I hope that my information will be even more helpful to the students. I did have a few students comment that they were impressed with how well I was able to answer questions and give descriptive information about my pain, condition and side effects of medications. That I believe comes with practice.
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.
I’m please to write that I’m not 157 days without a flare. Although I haven’t had a flare my body and mind are very tired. The seasons are changing and I feel it in my body and my bones. My Raynaud’s is more prominent so I have to keep my hands covered and warm as much as possible and the cold is sitting my hips and knees. It is interesting how weather and seasons can have an effect on our bodies and even my mind to some effect. As we move into winter I feel as though I go into protection mode, making sure I’m doing all I can to stay well, stay far from illness, try to get more sleep and rest and my exercise moves inside.
I’m still doing my yoga teaching and practicing on my own but as we move into the winter I really yearn for that hot yoga experience which I’m not involved in due to time really. I teach in a regular studio and practice in my home so my goal is to find one time a week to enter a hot yoga studio and do some personal practicing. I’m looking for that quiet time on my mat where my practice can be my own instead of my own practice be preparation for my classes. There is a fine line between teaching and practicing and how to separate the two. I think that is why many people love yoga and would make great teachers but choose not too because you lose a bit of your own quiet, time on the mat and moving to how your body moves vs how you think your students will move.
I took a trauma sensitive training course this past weekend for my yoga instructing and it was both inspiring and overwhelming. Many people turn to yoga to help them through their trauma. Many people experience trauma in different ways and handle it differently. The training was around severe trauma but as you listen to stories and you reflect on your own life so many people are plagued by trauma. Losing loved ones, living with illness, your own or someone else’s, abuse, addiction, war, pain, suffering. There are so many aspects to trauma and what people go through. As I’m listening to stories and reflecting on my own life, I feel gratitude, so much gratitude because I’m not living with trauma. That doesn’t mean I haven’t felt loss or pain, it doesn’t mean I’m not dealing with health issues, but it means that I feel like every morning I wake up I’m in a state of secure, love, health, happiness and contentment and feel grateful for this place.
I turned to yoga as an outlet to bring me better health and what I find is that it isn’t just my own yoga that brings me better health but sharing yoga with others brings me better health. I learn from the people I’m around. I take a little of their energy with me. I give little of my own energy to them. We are in a community of sharing, caring, healing and giving. As I move into winter and my body might flare I know I have the tools to recover quickly so although I’m thrilled about 157 days without a flare, I don’t fear the next flare.
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.
As some of you have read previously I have started Cellcept, a new medication for MCTD and Lupus to help change the course of the disease instead of dealing with individual symptoms. I have been on it now for 8 weeks and I feel pretty good. Other than my flare at day 300 my body feels strong. I am dealing with some life stuff so I am feeling more tired than normal but my body feels good and my exercise routine is normal. As I was talking with my doctor he kept referring to my Lupus and for 13 years I have always considered myself to have MCTD. Over the years I have done extensive research on both MCTD and Lupus. My symptoms fall more in the MCTD range but apparently my blood work indicates more of a Lupus profile. My internal organs are not affected as of right now and I do not have any skin rashes, lesions, or discoloration. I do have severe Raynauds and my fingers continue to be thick, puffy, and swollen every day. My joints feel ok and I take extra care with my small joints in weight training and yoga. I do have an indicator for Polymyositis. This is the first reading that has ever come back high for me and it does cause me some concern. Polymyositis is a rare inflammatory disease that causes muscle weakness. Although there is no cure for this disease there are treatments for managing it. Usually in the form of medication or physical therapy. My plan is to have a few more tests done stretched over 12 months so I have several readings at different times in my life and decide if this is something to be concerned with or was this a fluke or is there something else going on. Either way I am not in denial but I want to make sure I understand what my body is telling me. I enjoy physical therapy very much but decided to stop going nearly a year ago and perhaps that is a beneficial part of my management. I also have not had time to meet with my trainer so I believe there are things I can do and try before any medication is introduced into my routine. I am not opposed to medications but only when I have exhausted all other options.
This news has caused concern for my husband and rightly so, but I have not felt that same concern. I do have feelings of the unknown but let’s be honest when anyone is dealing with any disease, illness or issue every day is unknown. I am vigilant about my health and that won’t change it just means I need to do new research, figure out what Polymyositis means to me and do I really have it.