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.
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.
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.
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.