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.
After 245 days I had a flare, therefore, I go back to zero. However, I had a couple of signs that it was coming and it came and went quicker than normal so there are some positive aspects to this flare. Last week I was feeling very out of sorts, my mind wasn’t quite right and I was forgetting stuff. My fatigue level was way high and all the while I’m think that this is “normal” life stuff. For most people might be normal life stuff, but for me it is much more and I should have known that I was on the verge of a flare. Not that I would have done much at that point but to recognize it would have been good. On Saturday my fatigue level was overwhelming and although I taught my yoga class and took a couple of yoga classes I didn’t have a lot of energy for anything else that day. Again, I should have recognized but didn’t take notice. Sunday I woke up and my wrists, elbows and shoulders were so sore. I really thought that I had over done my yoga work. I do hours upon hours of yoga, why I thought that is still unclear to me but that was the biggest tell I had that I was going to go into flare.
I went to my yoga class, taught the class and as the group was moving to savassana I realized I was moving into flare. I have a short amount of time before it becomes very obvious to people that something is wrong so I ended class and got into my car. I took deep breaths the whole way home and when I got home my body went into full flare. I had the shakes, the pain, and the illness that comes with a flare so I climbed into bed and went to sleep. During sleep my body is able to recover so I after several hours of sleep I woke feeling much better. The thing that I need to remember about my flares is that they are fast. They are painful but they are fast. If I were to get the flu or a cold I could be down for couple days or even several days but with the flares I’m down for several hours. My body was not able to do anything Sunday except for rest and although I was able to eat and drink that was all I had. However, the next morning I woke up feeling great. I was able to do a gentle walk and although I’m still dealing with fatigue my body feels much better.
The thing I learn with each flare is that I have signs if I would just listen and my flares come on fast but leave quickly. My flares knock me down but then I’m able to get right back up and do what I need to do. The other thing is that my flare was on a Sunday so it doesn’t really interrupt my life except for that important time with my husband. He is very understanding and realizes that this too will pass and we will have next weekend to enjoy each other. We had 35 weekends to spend together flare-up free and I’m hoping that this day starts my journey to another 35 weekends or even longer.
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 have been taking my new medication for nearly 2 weeks so a couple of days ago I bumped from 500mg to 1000mg which is the plan to keep me at unless I find I need to increase again. I have had no ill effects from the new medication in a few months I can start to try and back off of some other medications. The new medication I’m taking is Cellcept which is designed to help kidney transplant patients accept the new kidney easier but I guess is there is also research to show it can change the course of Lupus and MCTD. There are a lot of unknowns but I’m willing to try if it means taking care of the disease and not just fixing the symptoms which I have been doing for 13 years. It is an immune suppressant so it means that my once super human immune system is even more compromised and I can pick up every common cold or flu bug like everyone else now. For 13 years I didn’t worry about getting sick because my immune system was on overdrive. The problem with an overdrive immune system is that it doesn’t know when to quiet down again and therefore I would end up in flare. Today I’m at 278 days without a flare and if I do flare I will need to stop taking Cellcept until it is over and then I can start again. Also, I understand that if I do get sick I will need to stop taking the Cellcept until I’m better which means I will likely flare but I will cross that bridge when I get there. The hope is that I can change the course of the disease and put the flares behind me. I live in a world now of when will I flare not if. Going forward it is likely that might change to if I flare which I’m excited to see happen.
Every day I wake up I feel like I’m testing the waters for that day and trying new things. Being flare-up free and doing so much yoga and meditation it is helping me put a new life into perspective. I am looking forward to a new future.
I have been taking my new medication now for 5 days and although I’m 295 days without a flare, I actually think the new medication is making me feel even better. One of the possible side effects is insomnia but I have not experienced that and have been sleeping great. I wake up bright and early feeling refreshed and head right down stairs to take me medication. It has to be taken on an empty stomach and I cannot eat for a few hours so this way I get into my body and it absorbs while I’m working out, getting ready for the day or enjoying a quiet morning with my husband and kitties. I have not felt any dizziness, sickness or other ill side effects. My body seems to be responding well to the medication and in another week I will increase the dosage to the amount in which I’ll stay. We are easing me into in hopes that my body reacts well to it and since I’m still taking prednisone and plaquenil as of right now my body seems to be reacting very well. In a few weeks I can start to back off some of my meds and see what happens. I so look forward to the day when I try to back off of prednisone even if just a little and hopefully no flares. I usually go into flare as soon as I play with the dosage of prednisone so this will be the greatest test of all.
I have another appointment in a few weeks to see what my blood work looks like after using this medication for a couple of weeks. I’m interested in speaking with the doctor again because the last time I was there he re-categorized me as having Lupus but all the research I show doesn’t indicate I have Lupus but still have MCTD. I wonder if my blood work indicated a change or if there is a different reason he uses that term with me. I have always said I don’t care how the doctor’s categorize my disease, I care more about how we manage it but this is stumping me a bit as I have never thought of myself as having Lupus in 13 years and really don’t believe I do so I need some clarification. My family believes he uses that term because, well, there is such a similarity between the 2 diseases and Lupus is easier for insurance, doctors, and patients to comprehend than MCTD. I see them as very different. With Lupus it can affect the skin which I do not have any issues with and also internal organs which my internal organs are functioning very well. I know it is odd to be in the MCTD category for 13 years and there is usually some sort of over-lap or switch to a different more severe autoimmune disease such as Lupus but I don’t believe I’m there.
Research and open communication are key with working with autoimmune diseases and understanding the information we are receiving is so important. I don’t understand the information I have received, my research doesn’t confirm the information I have been given, therefore it is my responsibility to have an opened conversation with my new doctor and get clarification.