One of my requirements for managing MCTD is regular doctor appointments with my Rheumy and they can be anywhere from 4 months to 6 months depending on what he sees, how my blood work looks and if we are making any changes. It has been 6 months since my last appointment but in that time I have reduced 2 medications, started biking and have gone over 320 days without a flare so this appointment went very well and we are not making any changes as we speak.
The routine of my appointment is get called in by the nurse, weight, blood pressure, prescription refills, issues and then when the doctor is ready he stands outside the door looking at my chart trying to get a sense of who is behind that closed door and what kinds of things need to be addressed. In this case the nurse for warned me that he had a resident with him on the day of my appointment and would I mind if he came in to listen. I certainly never mind as I think the more exposure our young doctors get is just better for all of us in the long run.
As he stood outside the closed door with the resident he opened my chart and I heard him say “oh this patient is unlike any other you have met today. She takes her health very seriously and mostly is so active that fitness is part of her management process.” Of course I am smiling from ear to ear inside my little room and wondering how the 3 of us are going to fit in here and what is this resident going to think of me. Before every appointment I must wait in the waiting room like everyone else and when you are sitting there you cannot help but notice the extremely frail, sick, and in pain people all dealing with their own medical issues. Rheumatologists deal with many different diseases so I have no idea who has what but you can tell the newly diagnosed ones, the ones that have been coming to this place forever, the ones that age is taking its toll and the ones that are really sick and coming to the appointment is probably all they will accomplish that day. We all have our own levels of disease, what I do is not what others can do but I didn’t start out where I am. I had to work from the bottom to get where I am today and my chart indicates everything I have ever done. I do not make changes, decisions, or try anything new without first running it by my Rheumy, he is truly the one doctor in my life that looks at all aspects not just my MCTD but everything and even though I have other doctor’s they have not figured out that I’m one person and what they suggest could have repercussions for other areas but my Rheumy is thinking of me as one person with many aspects.
He has never said no to my crazy of ideas of alternative therapies, he has never said no to diet change requests, he has never said no ever except to coming off of prednisone and I’m still working to change that no to a maybe or even a yes.
The resident had lots of questions but I think he was supposed to sit and listen. I’m ok answering questions and at this point nothing is private so I gave him the green light to ask. He wanted to know how I started exercise and with pain how does that work and how the medications I’m currently taking make me feel. This young man could very well replace my doctor one day and I want him to be educated in every aspect and not just by book. We are all different, we do different things and we recover differently. I have co-worker that goes to the same doctor for her RA we are not anything alike and I don’t judge her but I do realize that when we walk in there we are walking in at very different places in our lives. The doctor’s we come in contact with have to understand that as well and meet us where we are. This young doctor is well on his way to a successful career helping many people with autoimmune diseases, arthritis and other medical issues.
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.