I went 300 days without a flare and on day 301 I went back to zero. I got lulled into this false sense of security that I was on a new medication and perhaps my flares were over. I need to remember it is not a matter of “If, but when” and be ready for them. If they come once a year that is far better than every 60-90 days. I have hope that I can get more than 300 days next time. So, everyone asks me what can I do differently or what brought this flare on and what can I do next time. My husband and I are in the middle of selling our house and building a new one. We are doing this to be closer to family, to shorten our commutes and to make the quality of our lives better in our “middle years” but the stress that surrounds this endeavor is overwhelming and stressful to say the least. I’m not 20 building a house like I was the first time I did this and I also didn’t have MCTD the first time I built a house so I knew this year in general was going to wear me down.
Friday night we were sitting on the couch talking and discussing our plans for the weekend and I started to smell gas. My husband said well you are going to flare so we have to rethink the plans for the weekend. He reminded me that I smelled gas the last time I had a flare. I had to look back in my journal and sure enough at day 285 I smelled gas and flared the next day taking me back to zero. Smelling gas is a sign so now I know what to look for but what I do about it I’m still unsure.
I woke up Saturday morning and thought I feel ok and went to teach my yoga class thinking I had either beat the flare or it would come on Sunday. I got to class and in the warm-up my body started to stiffen, and the shakes came and the sore throat was so severe. I had 60 minutes to finish this class get in my car and home to bed. I finished my class, called my husband and he got the heating pad ready, fluids ready and was there to greet me to take me to bed. The fever came on and the pain was so unbearable. I ended up finally falling asleep and sleeping soundly for several hours. When I woke I felt mildly better but still as though I was hit by a huge truck. The rest of the day was spent drinking fluids and falling in and out of sleep.
However, Sunday I woke up as though nothing had even happened so I was back to day 1 and went to my yoga class to teach a full on class with no worries. I did take it easy the rest of the day to ensure that truly got my strength back but I felt so much better. Today I am back to my exercise routine and back to eating lots of food again and feeling great. Now my job is to take the next 300 days to research and see what I can do when I smell gas to try and either prolong the flare or just not have a flare. I don’t exactly know where to start but I have some time to figure it out.
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.
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.
Just another couple of days until Christmas and truly my body is feeling the effects of lots of eating, chatting and being off schedule. I am ready to have the holidays come and go so I can get back to my regular routine. As I have written in many past blogs I do not partake in the alcoholic beverages since it really can put me into flare quickly and without much effort. I am 178 days without a flare and not about to get one now when my body is already tired and teetering on the edge of exhaustion. However, I have been walking more do try and combat the terrible eating I’m doing. Yes I’m keeping it gluten free but not sugar free and it has really worn me down. My yoga practice is great and I have also been able to find myself in the Bikram studio for some warmth so I’m happy with the way my body is performing just wish I wasn’t so tired.
Weekly stats – 97,725
Daily – 13,104
Miles – 36.46
Floors – 141
Hope you all enjoy a safe holiday season and that your bodies are holding up
I fell off the edge of a flare into full blown flare. It was nearly 290 days but unfortunately I go back to zero and start over. I am not at my base line yet and I know I have to be very kind to myself as finding base line again will be difficult and it may be different. It seems every base line changes from time to time. I did increase my prednisone to try and help the symptoms and feel better but then I have to come back down off of it which is challenging for my body. This body needs things right all the time and I have not been handling my stress and work life very well. Is this my trigger? Is travel my trigger? Is adding hours of yoga to an already full day my trigger? I don’t know what my trigger or triggers are but I do know that I am starting over and have to take it 1 day at a time again.
Truth is, I feel completely bummed by it. I forget sometimes that I even have MCTD until I am quickly reminded and my body decides that now is the time to stop react and remind me to take it easy and get things under control. Until I find this control I will be resting, walking and doing my yoga. Speaking of walking, I also have my stats for the week
Total steps 90,025
I am fortunate that I am still amazed by my body and I don’t say this in an arrogant or conceited way but really in an amazement way. Since the day I woke up in May of 2003 and literally couldn’t walk I have grown stronger, more dedicated to my health and wellbeing and pushed my body to incredible limits when I could. I would also struggle a lot with “I can’t do that” moments when the truth was I didn’t know if I could or couldn’t. It was a defense mechanism that I used because my body has failed me many times in the past and I didn’t feel confident in it. I would amaze myself with different challenges and goals but in the back of my mind I always had this unsettled feeling that my body would once again fail me and unfortunately it did in the form of flares. I would have my flare, move on, and start back at base-line, and work my way back up until my next flare always wondering when that flare might come. Never really believing it won’t come. I still don’t believe it won’t come and although I don’t prepare so much for the flare I’m just more open to it coming and going.
As many of you have read I’m truly focused on my yoga and practice hours upon hours a week. I’m working on my teacher training, I’m also just working toward yoga for life but most recently I’m working toward a yogathon which takes place this Sunday at Gillette Stadium (Our NE Patriots Football home) and I will be doing yoga all day. I love the aspect of doing yoga all day and have not worried once about whether my body would hold up until about a week ago when during a long session of yoga my shoulders got incredibly fatigued from chaturanga dandasana and I got that aching feeling as to whether my body was once again going to fail me.
Since I have started a daily meditation practice I have been using my meditation as a way to make peace with my body and let go of some of these uncertain feelings I have and be proud of the body I have. This week I have literally done back to back sessions of yoga and increased my hours upon hours to (hours, upon hours, upon hours) of yoga this week getting ready and training for Sunday. I woke up this morning thinking my body truly rocks. I am truly proud of what I have put this body through for the last 44 days training for this yogathon and so very much looking forward to how it performs on Sunday. I’m proud that it is strong and that my conditioning is good. In my meditation I allow myself to have thoughts of flare and then I disconnect from those thoughts. Meditation is not about stopping the thoughts but letting them come and go and disconnecting from them.
I still don’t know what the future holds for this body of mine and living with MCTD but I do feel very capable and able to ask it to do things that would otherwise scare me. I’m nervous for Sunday, rightfully so, but for other reasons. The crowd, the unknown, the weather, and lower on the list is whether my body will hold up. I will be doing a follow up to describe my experience and how it all went and in the mean time I still have 2 more days of training before the big day and thankful for the achievement of strength.