picture from http://www.picturesof.net/pages/100802-143365-880053.html
Today I’m at 384 days without a flare but I certainly was teetering on the edge of a flare yesterday at day 383. I woke up early and I really didn’t feel like getting up and starting my day, so to do any form of exercise first thing did not feel appealing. I decided to stay in bed just a bit longer and got up to head out to my yoga class. My first yoga class was hard and I felt my body disagreeing with being there and stretching in triangles, warriors, and folds. Since I didn’t work out before yoga I decided to stay for class number 2 and and after my 3rd downward facing dog my wrists were in agony so when we were in plank and flowing into chaturanga I really regretted staying for another 90 minute class but I knew that my body was stronger than my mind was letting on and I finished the class with grace. We hit the floor in savasana and it only took a brief second for me to fall asleep right on the floor. I did wake up as soon as I heard the instructor’s voice again but I realized that I was facing a high level of fatigue.
I headed home and my husband could tell immediately that something was not quite right so I headed in and just laid down for what I thought was going to be a brief moment but instead it was an hour, and when I woke up I was feeling so much better. My body was not in agony but my mind was still pretty tired. I think I was dealing with a very high level of fatigue so I had to listen to that inner voice and just take it easy. I’m so glad I did because the rest of the day and today I am feeling much better and although I was teetering on the edge of a flare I do not think I went over to the other side and I didn’t end up in bed feeling very sick so I feel like listening, acknowledging and dealing with the facts of my body at any given time can really help me stay in the flare-up free zone.
Today was a day that started with a lot of exercise including strength training, cardio, and my new favorite find, golf. My husband and I have been really enjoying our trips out to the course and spending time together in the fresh air. Being able to laugh at ourselves has really helped keep the frustration at bay with this game they call golf.
Today I have been 1 year without a flare and I have so many things running through my mind. I wonder where my next year will take me and I’m hoping I can continue this path of being flare-up free. I have been working so hard on my fitness and getting stronger and I wonder if that is the key for me. Could it also be that menopause has stopped the influx of hormones which in turn has quieted my MCTD? I have so many questions and not a lot of answers. My family wants to hear what I think is the reason behind being flare-up free and although I don’t know for sure I have a theory. Before MCTD I was not an active person by nature and thus didn’t exercise. When MCTD came into life the pain was so bad I couldn’t walk and my Rheumy just told me to start walking and use a pedometer to ensure I was getting 1500 steps a day which is not much but felt like too many back then. As time went on and I became more fit and exercise became a regular routine in my life I spend hours at the gym on the elliptical, in classes, walking outside whenever possible but not much weight training. I also didn’t understand how to fuel my body for exercise to that extent so I was burning major calories but not taking enough in and causing stress to my body. Literally I was causing a trifecta of inflammation to my body every day and ultimately would flare. My Rheumy wanted some weight training built into my routine each time I did weight training and while my muscles healed my body would flare so it didn’t take long for me to let the weight train slip by and stop altogether.
I did this for many years and would keep a journal of how many days I was flare-up free and kept waiting to reach 90 days. I used Bikram yoga for 9 years as a way to keep my body loose and enjoy the heat which my body loves but in truth that is a stressor as well and causes inflammation but I did finally reach 90 days without a flare and decided I need to figure out how to get more of those 90 day periods. I actually got to 180 days but then went into flare just by being too cold. Temperatures, my fragile immune system, and the added daily inflammation were too much for my body to endure so I flared. Once I flare it takes a long time to get back to a long period being flare-up free again so I struggled. It wasn’t until a couple of years ago when I embarked on the Paleo lifestyle and incorporated walking, Bikram yoga and weight training into my life while eating real food. I am not 100% Paleo today and although there are days I wish I were I’m too emotionally attached to food to be 100% so I live in a 70/30 realm and try to keep my diet as clean as possible. The weight training has really proven to be beneficial and I feel stronger than I ever have before. I started eating meat the same time Paleo came into my life and I think that combo of high fat protein, exercise and many more calories is again the trifecta I need to keep my body strong. I know I still have inflammation because my test results show it but I don’t feel it like I used to.
The last decade + MCTD has been my identity and write this blog because of my MCTD but now I don’t have much to say about it and I don’t see MCTD as an identity for me. I know I have it, but I don’t feel it and it doesn’t stop me from doing what I want.
I’m trying so many things and doing so much but keeping my core keys in tact which is eating enough. This is the most important thing I can do. In truth I have gained 10 pounds in the last 1.5 years as I have added the weight training, meat eating, and more calories into my life but according to my trainer I need this and perhaps one day I won’t care what the scale says or even have the urge to look at the scale but right now I look and sigh and then remember that I have gone a year without a flare. Sure I could get extreme with diet and exercise but to what end result? My fear would be a flare which I’m not willing to do.
I just keep doing what my trainer asks of me and find myself lifting heavier each week, feeling stronger each week and watching the passing days without flares increase. Now if only I felt so good about my golf game!!
Today I’m at 310 days without a flare-up, have successfully reduced my prednisone and find myself sleeping so soundly that I need an alarm to get up each morning. There was a time when I didn’t even need an alarm and my body just automatically woke up at 4am. I do believe I may not have been sleeping very well all that time so my body was anxious to just get up and get the day started. Now I need to give myself a little more time to sleep and when I get up I decide then what I will do. Some mornings I wake up ready to walk, or ride my bike. Some days I need my weight training, some days I wake up stiff and need some yoga. Although I do usually have a plan before I go to bed for the next morning I really change it based on how I am feeling in the morning.
I have been keeping a journal each week for my trainer and he asked me about it this past week. Not in a bad way but just noticed my food had increased in the week and I had to tell him that I’m hungry all the time. This hunger is real hunger, sure some is probably mental but I have read that if you could eat vegetables or meat then your body is hungry. That is what is happening right now. I feel this hunger so I drink a big glass of water and then I still need food. My increase has been significant but I also am training on my bike 5 days a week, along with my Insanity, weight training, vinyasa yoga, and walking. My body is burning so many calories and although I’m replacing them I’m finding that the hungry feeling is just with me all the time.
I’m hoping that once my ride is over and I can find more time for yoga, and more time for walking and make riding my bike more about enjoyment then training this hunger will subside. Personally I think I’m eating too much but my trainer says not to worry about it right now and let my body go through the motions of whatever it needs and wants. The trick is going to be to make sure when I get hungry I stay really clean with my food. I have added more carbs back into my diet and I’m starting my day with a big bowl of oatmeal consisting of thick cut oats, chia seeds, flax seed, pecans, coconut oil and apple. I was drinking down smoothies each morning but my stomach really needed to digest the food and I think my body needs the carbs after my morning workout. My lunch time work out is little different because although it is still intense I don’t eat carbs even clean ones later in the day so that is a big protein, fat lunch and veges as my carbs. It is double servings of food however so I know I’m taking in a lot more calories but I’m really trying not to focus on calories and continue to focus on how I feel.
That is catch 22, my body feels one way, my mind wants to ignore what the body feels and eat less and my mind wants to jump on the scale and scrutinize my decisions but I’m trying to let my body win this battle not my brain. My brain will forever want less even though it needs more and I need to ignore those thoughts as they enter in. I want my brain to quiet down, let me work through this and then if I need to make adjustments make them without judgment. How did I become so judgmental of myself? For the most part I think I make good, rational decisions that I can live with and why my brain wants to scrutinize my eating seems so ridiculous but it is years of my own doing. I am trying to change that feel the hunger, recognize the type of hunger and deal with the hunger. This is not easy.
Today is the beginning of a new month and a spring month at that. As of today I am at 303 days without a flare and this is truly the longest I have ever gone. I never thought I would get to 300 days but here I am and trying to finish out the year flare-up free if at all possible. My body has been so good to me for 303 days other than the parasite a few weeks ago but everyone has their down moment. I have been training hard for my bike ride coming up in 39 days and I just hope I get through this ride successfully.
I figured on day 300 of being flare-up free I would try and decrease my prednisone again. I try to decrease every once in a while and I was feeling so good that I didn’t dare try but now I feel like I really need to try just to see if my body can handle the change. If I can remain flare-up free and decrease a medication that is truly moving in the right direction. I have been being careful with my food other than the other day when I did just indulge in carbs galore and I think my body was really wanting and maybe needing them but now I’m back into training gear and watching closely my diet and sleep.
Once the ride is behind me I can focus on my yoga practice. This is going to be a bitter sweet challenge for me because after 8 years of a regular Bikram practice I am turning to a regular vinyasa practice for a year. I need a break from Bikram and although I love the heat I don’t want the commitment of 90 minutes every time with a much needed shower every single session. With a regular vinyasa flow I can jump into a 60 minute or 90 minute class and continue on with my day. I have found a studio near my home which will allow me to ride my bike to class each day and they offer enough classes during the week to give me a regular 5 day a week practice which is really what I’m lacking in my Bikram practice. For many years I had been going to Bikram several times a week and for a year almost every day but for the last 8 months my Bikram sessions have gone to twice a week and even that has been hard to keep on a regular basis. It is time to incorporate yoga back into my life on a daily or at least regular basis and I can commit to a vinyasa class easier than a Bikram class right now.
I already miss my Bikram ladies and I haven’t even left yet but I know that our paths will cross elsewhere and I know that my Bikram practice isn’t over completely just for a year while I try new things like cycling and golf. I’m looking forward to spring really finding its way to Maine so we can go golfing. Right now we are scheduled to take my mom golfing for Mother’s Day but there is no guarantee that the weather in Maine will be nice that early in the season. I will do anything for my mother however so even playing in the mud sounds fun.
Today is 266 days of being flare-up free and now I’m really starting to think when will it come? Some might think that at this point I just should think it won’t happen again but my brain is going in a completely different direction. The other day I was dealing with a high level of fatigue and thought that was my first sign of flare, but not true. After my battle with fatigue I went to Bikram and felt a little dizzy after coming out of a pose where my head was below my heart. That was a first so again I thought; ok this is the beginning, but no not true. Yesterday I went to my weight training session and worked out hard with some serious heart pumping weight training and heavy weight so I was worried about being dizzy as well as what my body would do after. Today I woke up very sore but again no flare. I just finished my Insanity Class and although I was utterly exhausted and sweaty I felt really great. So why is my brain thinking the worst? I honestly think because I have not come to accept that my MCTD can truly take a back seat in my life.
For the last 10 years although I don’t dwell on it and I don’t let it stop me from doing what I would like to do, it has always been at the forefront of every decision I make. I chose to make decisions in my life based on feeling good or not and if I might not feel good for days after. In the past if I was completely exhausted I would shut down and rest, now I realize I can be exhausted while staying connected to family and my husband but modify my rest with fun ratio. For Instance, although I really wanted to stay home and rest on Sunday in the past I would have just said no my health comes first and although my health is still important to me, I went with my family and husband out but I just sat and rested while with them. I did sleep so well that night and probably better than if I would have taken a nap during the day.
I still have to listen to my body as everyone does but I don’t have pretend I’m the delicate flower my husband thinks I am. I am stronger than ever before and more determined to put this MCTD in remission. From the beginning of my journals I wanted to be able to say that my MCTD was in remission. Technically I don’t know how long I would have to go without a flare to be considered in remission and considering I still take all my medications daily maybe that keeps me out of the remission bucket but I do know that I feel great, I haven’t flared, and I’m trying new activities all the time with my new found strength.
As each day that goes by and I find my more days in my journal where I’m flare-up free I wonder if this is my new normal. I have gone 245 days and it wasn’t too long ago that I was striving just to hit 90 days without a flare-up. This morning as I was writing in my journal that I have completed 245 days without a flare-up I felt so accomplished. Not that I can control everything about my flare-ups so feeling accomplished might not necessarily be the correct emotion but it was there. I have been doing more travel for work and that can always increase my fatigue which can cause a flare-up. I did feel a twinge of a flare as well as a cold coming on but my super immune system took over the cold and the twinge of flare went away with.
I don’t know if the sore throat I was thinking was a twinge of a flare was really part of the cold but either way within a few hours it was gone and I was back to feeling good again. My base line is always changing in terms of fatigue, fluid increase or decrease, stiffness, sleeping or not sleeping, weight gain or loss, or even strength. As it stands now my base line for feeling good and managing my MCTD is at a record high. The swelling in my hands and feet is also at a record high which means my baseline of normal has changed. As it was presented to me, it is not only fluid but build of tissue that is part of the arthritic symptoms of MCTD. Although my doctor doesn’t believe there is much I can do about it I continue to research to see what I can find out.
Having swollen hands and feet is uncomfortable, makes daily tasks difficult but it is something that I have to work through. My strength has increased so much in my body with much stronger legs, arms, and core so as I’m lifting weight I find that the weight doesn’t feel heavy but my hands are not strong enough to hold the new weight I’m lifting.
For instance, yesterday was my training session and I had to grip a large weight with my finger tips for the exercise. The weight itself was not heavy but my hands and fingers were slipping and I could not grip it the way I need to. We adjusted and grabbed weights that had the same weightiness but that I could grip with my whole hand to help support it.
I’m thankful that the trainer I have now understands my situation and gets me as a person all at the same time. He will notice that I want to push through something but at the same time can tell that I’m just not ready and asks me to back off where I just might push through. He also notices when I’m energy is a little low and tries to help me get it a bit higher. There is so much I want to do and so much I can do but there have been times in my life that I didn’t know if I should. I trust that he will be honest with me about whether or not I should and then I can take it from there. Everything in moderation unless you are the type of person that needs more and then moderation just doesn’t work. When I first started seeing him he kept saying I need to see a down day. Now he realizes that Sunday is my down day. It is the day I go to Bikram, take golf lessons, spend time having fun with my husband or family and that to me is all about taking it easy but still staying active in life. We now work with this activity as part of my life and not part of my exercise routine.
I can use Insanity, weight training sessions, spinning, running and striking as my exercise but keep Bikram, golf and general playing as life relaxers. That to me means balance and that is what I’m striving for.
After all these years of being afraid to be on a bike and riding a bike, I have become addicted to spinning. I am taking as many spin classes as I can during the week and each time I leave there I feel totally fatigued but so inspired to go back again. I am training and getting ready to do a 50 mile bike ride for the Tour de Cure in June and although spinning is probably very different than riding a real bike outside on the open roads, we all have to start somewhere. In the coming weeks I will researching good bikes to buy and familiarizing myself with riding on the roads around me.
Living in Maine lends itself to many quiet roads but also incredibly big hills so when we are doing hill work in spin class I am really pushing myself hard. I know along my journey of bike riding I will be faced with some intimated hills that may make me want to turn back, but really where will I go? Life is all about trying new things, accomplishing those things, and failing at things too. Although we try and keep our failings to a minimum to pretend we will never fail or we never do fail is not realistic.
I was with my trainer during one of our sessions and we had just finished some mitt work, or striking in boxing terms. He looked at me and said sometimes you get knocked down but you have to get back up. My eyes got wide and looked at him in all sincerity and asked if he was going to knock me down. He smiled and said that he wasn’t going to knock me down, that I was going to knock myself down, but I would get back up. Basically I was learning to fall and protect myself, while doing a “Turkish getup” to build my core and pick myself up off the mat. Since that moment I have been knocked down by life, by words, by people’s actions but I continue to get back up. I want to get back up. I am at a place in my life where I feel strong, I feel capable, and feel like now is the time to try everything that I ever wanted to.
I am feeling healthy and write this post with having 236 days without a flare in front of me. Each day that comes and goes that I don’t flare gives me another day of strength. My mother asked me what I thought the reason was that has kept me flare-up free for so long and although I don’t really know I do believe that each passing day brings strength to keep me on the right track. When I have a flare it takes me days, or weeks to fully recover which means those are days that I’m not feeling strong or capable and that lends me to lower more vulnerable times in my life. If I can stay flare-up free I can continue to try new things and yes get knocked down but continue to get back up and trying something new.
It has been a while since I have written a post, so I do have some catching up to do and will try to be better about more regular posts. Life is something that just gets in the way sometimes and that seems to be happening to me right now. However, with that said I am 223 days without a flare as of today and I couldn’t be happier about. I don’t know exactly what is helping and what the real cause of my many flare-up free days are based on but I do know that I am feeling strong, energized, and capable of much more now than ever before. I’m taking advantage of this new found energy and trying some new things.
I participated in a 2 hour 84 Asana class that went through the Bikram poses but also added some sequence flows and advanced postures. It was incredibly fun and showed me how far I have come with my yoga practice. I enjoy the sequence and flow very much but really enjoy the power of balance in the Bikram postures. I also enjoy the stretching and concentration of the Bikram practice but adding a few sequence flows really gave it a pumped up energy that was good for the joints and the soul.
I have also signed up to ride in the Tour de Cure this year and although I have never been a bike rider and really I’m not very good on a bike I feel like I want to do this ride to help find a cure for diabetes. Honestly I would never get off a bike if they could find a cure for MCTD, cancer, diabetes and other autoimmune diseases but if we can make a connection somewhere then science might lend it to curing all kinds of diseases. I recently just learned about prednisone induced diabetes and I found myself feeling very frustrated because I have been taking this medication for 10 years and I didn’t know anything about it. In all fairness 10 years ago if someone told me about it I might have heard it but clearly didn’t process it. However, over the last 10 years I have become an amateur medical student for myself and this has never popped up for me and I come across a lot of information in a day, week, month and even year. I’m so surprised that I haven’t heard about this and now I wonder what it really means and how it is diagnosed. As you can imagine I have a new focus and now that I know this is possible I want all the information I can get on this subject.
I have been fortunate enough to not have diabetes enter my life but how much prednisone does it take to induce diabetes? I don’t know but I will find out. I am riding for a specific cause but I’m also riding for people, people I love, people that have diseases, people that have watched me struggle at times in my life but now get to see ride a bike for 50 miles. I won’t promise to be graceful but I do promise to finish. Part of the winter training is spinning inside and how I love spinning. Over the years I have been afraid to spin and ride a bike but today I’m much stronger than I have been in the past and ready to climb out of my comfort zone and find fun in life outside the gym.
I am still doing my Insanity Class 3 days a week and meeting with my trainer for weight training so the gym life is not over for me but being able to try new things is really liberating. I recognize my active life is not for everyone and my husband and I need something to do together so we have recently started taking golf lessons. This is a way for us to be together, I get to stay active, he gets to incorporate some activity and we get to support each other in a new area for both of us. Its times like this I’m as thankful for this new found energy as I don’t think I could keep up with myself otherwise.
After 10 years I’m having my first arthritic flare which I am categorizing differently than my regular MCTD flares and I’ll explain why. Having arthritic flares is not uncommon when dealing with MCTD but the damage is more permanent than a regular flare. With regular flares for me they come in fast and leave just as fast leaving me exhausted from pain, nausea and an incredible sense of being knocked in the head hard with bouts of brain fog and loss of words. Now my arthritic flare isn’t like that, instead it crept up in the form of a swollen fingers and toes and over a period of a week I felt my rings getting tighter and my ability to make fists with my hands decreased over a week’s time. That might seem quick to some people but for me that is a gradual symptom I have not experienced before. Swollen hands, fingers and feet are not unusual but not being able to get them back to normal is what is unusual this time around.
I was going to see my Rheumy last week so before I went and had all my rings resized I wanted to see if this was permanent or not. I explained that I have increased my time in the Bikram studio and drinking more dandelion tea in order to get the fluid off and he gave me an unexpected blow that this is not fluid retention but this is an actual arthritic flare in which my tissues are damaged and causing growth in my finger joints. After I had a moment to get over my shock we discussed my options. The most obvious are to increase prednisone yet again and see if that inflammation will decrease, try some different medications all together or move south. The last one might sound like a joke but the truth is my doctor recommended moving to warmer climate and soon. This is a topic that of course pops up from time to time with my husband and me. We do believe our long term plan is to move south to warmer climate but I have strong family roots in Maine and two incredible nephews that I can’t imagine not seeing on a regular basis.
It looks like I’m back to options 1 or 2 again. Trying new medications come with risks; will they work, what are the side effects, what are the long term effects, how will I feel, how will I have to change my current routine, is the medication switch permanent? These are the questions I ask myself and my doctor. Once we establish some of this information it seems the wisest thing for me to do is up my prednisone. I know the effects, I understand the differences and it is not a permanent change, so that is what I decided.
I started taking the papaya supplement but it hasn’t been too long yet so I’m not ruling it out but what I have found thus far is that it hasn’t really helped my hands by my stomach feels so much better. With the medications I take and the damage to the stomach lining I have bouts of nausea and cramps as well as bloating and this has really helped that greatly. They are chewable tablets so it almost feels like taking antacids but they taste way better. I have not need any Prilosec since I started taking them and in general I find them a good supplement to add into my daily routine. Over time if I get relief with my hands I will be thrilled so I’ll keep taking them to see what happens.
We have entered into a new month and unfortunately this month is riddled with daily dropping temperatures, frost, and incredibly dark mornings. I have been creaking and cracking out of bed each morning forcing myself to move this body in some fashion very morning. I know that colder and darker mornings are on the horizon with each passing month and in Maine we have a long time to endure these cold months. However, this is just the start, therefore, the stiffness and soreness I’m dealing with is still bearable but a real reminder what I’m faced with for several months ahead of me. Everything about MCTD is magnified as the temperatures change and although I know that living in warmer climates would help reduce these symptoms, but we are not committed to making that type leap just yet in our lives. Anyone with MCTD that is sensitive to cold knows what I’m talking about but there are also people dealing with MCTD that the warmth does the same thing to them and they actually feel better when the temperatures drop. Science is very specific that when things are warm they swell or expand and when cold they contract. Think of wood as a specific species where this is very prevalent. Now think about your digits, do your digits seem less swollen in the winter time and more swollen in the summer time? For me my fingers are extremely swollen this time of year. I actually increased my prednisone by another mg in hopes of reducing some of the inflammation I’m feeling. Sadly it hasn’t helped and I feel like these hands are more obstacles than they are tools.
As my body shifts and gets more used to the cold weather it will normalize and hopefully these hands will go back to normal. However, I’m also obviously aware that with MCTD there can be real permanent changes that don’t get better and over time the size of your hands and fingers can become bigger causing real shifts that don’t go away. Every year during this time of year I wonder if I’m facing permanent change or a short term dilemma. Either way I keep my hands as warm as possible, increase my use of Niacin, and now I will increase my time in the Bikram studio.
The natural heat of the Bikram studio is not hot enough to cause me to flare at this point and this is the time of year when Bikram is exactly what I need. Ever since I started running again my body is tight. The postures that I used to flow right into and hold so gracefully are complete killers at this point. I feel my hamstrings burn, I feel my knees stretching in pure agony and I feel my hips protest with every stretch I put them through. Granted, they would be tight regardless of running or not based on my MCTD but when I was doing 5 days a week of Bikram I was staying loose most days. Now I have decreased my amount of time in studio and increased my muscle tightening exercises which is causing double tightness. After 90 minutes in the studio I wish I could say I was loose but it takes more than that for me.
I am so worried about flaring in general but really I don’t want to flare at the gym, in the yoga studio or at work. I will be entering the Bikram studio more often in the winter months and watching how I feel and if any signs of flare creep up I will have to re-evaluate yet again. Life is all about daily evaluation with or without MCTD.