I really enjoy this holiday quite a bit and always have. It might be because my birthday is close to this holiday that I feel like this is my special holiday. Be someone you want to, or pretend to be scary, or don’t pretend and just reach down inside and find the person you are and let it out. This time of year the season is changing and change is good too. This is the time of year that you start planning all those get togethers with family and friends over the next 2 months. This is the time when you start preparing your body for all the food it will consume in the following weeks and you start with all that Halloween candy.
The mounds and mounds of candy that every house-hold has hoping they will give it all away with each trick- or- treater that arrives only to find you start giving handfuls away to every child now hoping you are not stuck with a lot of it at the end of the night. Reality sets in and you still have an entire bag for yourself when the last child has come and gone and you have turned out the lights. Normally people say put that extra candy in the freezer and have a piece when you want one, or take it into work and give your co-workers the candy but keep some for yourself and just put a piece in your purse for that 3pm craving. I say Nay, don’t do it to yourself. If you are living with MCTD than sugar can be a trigger for you and if you want to eat something decadent go for it but store bought miniature sized processed candy bars is not it. Those morsels of sugar are filled with gluten and have nothing your body needs or want. Notice I said your body. I get the fact that you brain is the largest and loudest muscle in your body so when it tells you that you need that chocolate it is hard to say no to your brain, but the truth is your body should be the loudest and you should listen to it and stay far away.
Make yourself a delicious cake, muffins, bread or scones. Make them gluten-free or not but when you take the time to make that treat with your own 2 hands your body and mind will thank you.
Could there be benefits to having a disease such as MCTD? I asked myself this question many times in the beginning hoping at some point I would find myself saying yes. I’m at the point where YES, there are 4 that I can think of. Although, some people say I live in a rose colored world the truth is I can actually find positives to this whole thing. First, I’m the healthiest I have ever been in my entire life. Even with medications and living with a disease my health is the best it has ever been. I’m stronger, and more stably balanced than ever before. My weight is at a normal range for the first time ever and I’m eating better than I have ever done before in my life. I choose not to participate in alcoholic beverages unless I really want to them and I’ll talk more about that later. Second, I honestly can say that I have been sick, really sick twice in 5 years. The problem is that as soon as I start to get something my super immune system takes over and fights everything in its’ wake. The 2 times that I can honestly remember being sick I thought I would die. While people around me are constantly coughing, and calling out of work I don’t suffer from those same kind of illness. Third, having this has shown me how strong I really am and how focused I can really be. When I put my mind to something that could help me through this process there is no stopping me. Fourth, and final, I have found such a support and such a love in my family, friends and husband. When I need them they are there for me and even though they have always been there for me I just recognize it more now. I embrace it now and I cherish it now. These are benefits to having MCTD. There are benefits to having a disease.
Take it from someone who starts their day at 4:30am with exercise that everyone needs a day off from time to time. I took yesterday off from work and had the whole day planned out but as my husband’s wise aunt says “we make plans and God laughs.” My day changed drastically because anyone that lives with MCTD knows that weird things happen to our bodies out of the blue. I did not have a flare-up but I spent the entire night up sick and made getting up at 4:30am difficult. I decided to change my day based on my body and stayed in bed until I was ready to go to a late morning Bikram class. I still go to Bikram even when I’m not feeling well because it is easy enough on my body that I can get through most pains and stiffness and feel really refreshed after a class. Again I was not disappointed and felt great. It allowed me to have some fun and enjoy myself today. These types of days I call my days off. I still do some sort of physical activity but just not a 2-3 hour session and not to my full intensity. I can still give my body what it needs without doing harm.
Knowing and understanding what your body needs is critical when dealing with MCTD because every day it is different and if you aren’t listening closely you could miss it. Take time to find what works for you and if rest is what you crave then rest and if you feel great give it all you got.
Going 30 days without a flare-up may not seem like a big accomplishment to many people with MCTD but for me it feels so good to say I have gone 30 days without a flare-up. Between the Bikram yoga and going to Manual Physical Therapy twice a week and watching my diet and not becoming contaminated by gluten has really helped in my journey to good health and flare-up free.
When I was first diagnosed with MCTD and got my medications right I was able to manage my disease much better. I was also in my early thirties and working hard at getting healthy. I was able to go a long time without a flare-up and really was able to enjoy my life flare-up for months at a time. About 2 years ago my flare-ups were much more frequent and now I can get them much more frequently and actually for many months I was getting them every month or multiple times a month. To say I have gone 30 days is great. I’m looking forward to being able to say I went 60 days and also to be able to say I went 90 days. Those will be great accomplishment and really every day we have to look for our accomplishment no matter how small they may seem, I know they are meaningful to me.
Today is my 38th birthday and I feel like I have so much to be grateful for. Usually people are counting their blessings at Thanksgiving and I’ll do it again than with my family, but today I’m count my blessings and counting my accomplishments with myself. I have come such a long way these past several years and watched myself grow stronger, healthier and wiser. At this point I know who I am and love myself. I’m taking this time to look back at the last year and evaluate where I am and where I want to go. Some goals I set for myself in 2010 were to find time to mediate 10 minutes once a week. I decided that was not nearly enough and since I found a new type of mediation in Bikram yoga I do it for 90 minutes 3-5 times a week. I also set a goal of myself to run some road races, ok this goal did not get met but I have walked a lot. The impact of the running is ok sometimes but walking is really better for my joints. I like the free feeling of running and won’t give it up completely. I also set a goal for myself to work out at least 90 minutes a day. I set this goal because as I get older I don’t want to wear out my joints with too much exercise so this goal as been revamped to be 90 minutes of intensive exercise a day. I still get in my 2-3 hours a day and enjoy every minute of it.
My favorite goal is to spend more time with family and friends. I had a nephew come in this world in August and he is so precious. He is so amazing and my heart grows 3 sizes bigger whenever I see him. This goal is easy for me, I love spending time with my family and adore spending time with my nephew. I have mentioned I don’t have children of my own and I have no regrets about that but there is nothing as special as a baby in your arms to make your uterus hurt. Children were not meant to be for my husband and I although we tried so we now enjoy every minute we can with our nieces and nephews and watch them grow into a wonderful people.
My last goal to speak about is to make sure I spend enough time with my husband to ensure in the midst of my busy life that he knows he is the most important thing to me. His love keeps me going daily and his heart and soul are connected to me in a way I have never thought possible. I would do anything for this man as I know he would do anything for me and on many occasions have showed me just how much he is willing to do for me. He is my stability in a very unstable situation. We really don’t know day to day how I feel or what challenges my illness will bring to me next but together we are ready for anything.
My accomplishments are so many but there are things I have really enjoyed such as hiking with my husband, sister, and step-father. When I look back and think there was a time I had difficulty walking and I hike mountains that is a huge accomplishment. I love kayaking and fishing with husband and when we first started my body would cramp up and I couldn’t stay out with him because I needed to stretch. Now I can spend lots of time with him enjoying the peace he finds out on the water with nature. My greatest accomplishment is finding the strength in myself to know that I am strong and loving myself completely even on the days when I don’t feel good. I never say I wish I didn’t have this illness because to say that means I would have to go back 7 years and something would have to be different to change the course of my life. I would not change a single thing about my life, not one day, or one minute. Everything that has happened to this point happened for a reason and has shaped me as a person, a wife, a daughter, a sister and now an auntie.
Sunday morning in Maine it is about 50 degrees but the sun is shining bright and it is a perfect day to dress in pink and head out for a Strides Breast Cancer Walk. I’m very involved with breast cancer walks and raising money to find a cure. I hope to be able to say we found a cure in my lifetime and more importantly for my nieces so they don’t have to worry about this at my age. My husband and I headed to Portland with 3000 other walkers, laced up our sneakers, and walked as group around our Old Port Harbor area. It was quite inspiring to see walkers of all ages out there for the same cause and to see the next generation getting involved and bringing large groups to the walk and raising lots of money.
I have many women in my life that I care about deeply; a few have been struck with this disease and survived while others, including my grandmother did not. Even the small things I can do help achieve great things. There will come a time when the women we love can rest easy but until then I’m fighting
If I’m able to bring some awareness, ideas, and tips to someone, anyone than putting my thoughts down in a blog is important. Many times we aren’t sure if we should do what our doctors say or find alternatives or do a mixture of both. Hopefully you trust your Rheumatologist and will use their knowledge and follow what they ask of you. One of the hardest parts for me manage is my Raynaud’s. The clinical term is a vasospastic disorder causing discoloration of the fingers, toes, and occasionally other areas. My hands are effected the most and my feet in the winter. I live in Maine so our winters are long and cold and protecting my hands is difficult. When the Raynaud’s comes on it can be painful so some things I do to manage this has come with trial and error but I think I’m making headway. I take procardia which is a blood pressure medicine but only a very low dose that is extended throughout the day and that keeps the blood flowing, I also take 1000mg of Niacin which has really helped and keeps my veins wide open and keeps the blood flowing. About 4 years ago my nail on my ring finger lifted and I couldn’t get it to reattach for 3 years. Finally my doctor was doing some research and found out that Niacin has helped people with Raynaud’s and I’m willing to try almost anything. Within a month of taking it my nail reattached and I have not had any problems since. The gluten free diet also helps with the Raynaud’s and if you live in a cold climate like Maine I suggest keeping hand warmers with you at all times and just break them open and hold them whenever needed. When the hands hurt it makes it hard to write, type, lift anything and just function normally.
In case you weren’t aware, exercise helps with the increase of blood flow and opening up the veins so keep on moving every day. I also find that my regular practice of Bikram has helped a lot. The warmth of the studio along with the postures is opening up my blood vessels and allowing a more even flow so I have gradually seen the pain go away even if the purple color hasn’t.