I successfully made it through day 41 flare-up free and woke up this morning without the sore throat. Maybe my twinge has passed. Thankfully it has because it is going to be a rocking good New Year’s at my house. Actually it will be just what I want. My husband is working but won’t work late. I have the day off to just do whatever it is I want. I will start in the Bikram studio this morning just to get my head clear and have a soothing practice. I am planning on a snowshoeing trip this afternoon since the weather will be close to 40 degrees. Tonight will consist of a nice dinner and in for the night with a movie. The days of getting all dolled up and heading out into the Old Port just doesn’t seem appealing anymore. It is so cold out there, the snow is so high, parking is a disaster and actually nothing gets started until about 10pm which is way past my bed time.
The time I get to spend with my husband is all I need. We have shared many a quiet New Year’s together and they are the ones I remember. As a 20 something I don’t really even remember those days but I hear my sister speak about her night’s out and I’m sure my stories would be very similar. Family, love, quiet and warmth is what really matters now.
I won’t have any fun stories to tell come Monday when I’m back at the office unless of course they care to hear about our snowshoeing adventure.
I read that if you were only going to make one resolution be fearless and live boldly. My New Year’s resolution is to make every moment mine, imagine the person I want to be, commit to it and embrace myself fully.
My final thought as I stepped boldly into the New Year and welcome 2011 is
“We can throw stones, complain about them, stumble on them, climb over them, or build with them.”
-William Arthur Ward
I feel like I totally jinxed myself by writing I was flare-up free after 40 days. As the day went on yesterday and this morning I have a sore throat. For most people that means a cold is on the way. However, I haven’t been sick with a cold or flu in over 7 years. My body just doesn’t allow itself to get sick because my super immune system just takes over. A sore throat is a very typical symptom of MCTD. The good news is that I only have a sore throat, there is no joint pain or skin sensitivity and honestly I woke up feeling well rested. I’m on my way to the gym this morning for a medium workout to get a good sweat and some sitting time in the sauna. I have been using the sauna as needed because I have read they are good for chronic pain and inflammation. I’m still skeptical about the effectiveness of saunas but at the same time I am willing to do anything I can to make it through day 41.
Do I dare say out loud that I have gone 40 days without a flare-up? I guess I do dare. Who better to share this news with than my blogger friends. I feel very blessed considering I had 3 rounds of hormones to battle with but I was able to keep them level enough through the last month and a half that they didn’t end up putting me into flare-up. As well with the holiday stress I was able to still find enough time to rest and take extreme care of myself which has helped get me to this point. I was suppose to have another appointment with my doctor and I just called to say do we really need to see each other so soon, I’m actually feeling good, I haven’t made any changes and there really isn’t anything at this point to discuss. We decided we can just see each other at my normal quarterly appointment and hopefully, could it be true I might still be flare-up free? Here’s to a New Year of decreased flare-ups. I think the key for me is to stop as soon as I feel that level 10 fatigue and recover. If I can do that successful and keep myself from going into the painful flare-ups it is well worth it.
When I’m getting up in the mornings I’m dealing with some stiffness but as soon as I start moving around and getting the blood and fluid moving with exercise that goes away quickly. I have been on the gluten-free diet long enough now to really be able to tell if it is working. My PT said try some gluten and just see what happens. However, I’m not ready. I want to go flare-up free as long as possible even if it means I don’t exactly know how I got there, I just want it. I don’t want to jeopardize it at all. My feeling is that a flare will eventually come without my help so I’ll just try and help them stay away instead.
On Friday there was a lot of last minute running around and getting the last few things done for the big day, but we still had Christmas Eve to celebrate first. My husband and I were in a store and instantly my face lost all its color and my eyes lost the sparkle and he just looked at me and said enough is enough we are heading home so you can nap before tonight’s festivities. I might have protested if I didn’t feel as tired as I must have looked. It is so interesting how it can come on so quickly and be at a level 10 before I even realize I went through levels 5, 6 & 9.
In times like that it is best to put everything aside and just stop, drop and nap. I didn’t actually sleep but I was able to rest enough to feel better before heading out. Tis the Season for long days, even longer nights and a whole lot of eating not the best foods for me. Tis the Season to also recognize this and adjust. I’m ready to ring in the New Year and get back to normal living.
It has been a few days since Christmas now and I have had a couple of lovely rest days at home with no commotion, no phones ringing, no visitors, just silence. I don’t think we have turned on the TV yet either because both my husband and I just want quiet. Oh not true we watched the Pats game on Sunday but after it was over turned it off. We got some new music for Christmas and have put that on for short periods of time but not much more than that. Unfortunately, I’m back to work with my quiet times behind me. I only hope it is enough to pull me through next couple of days until I have time off again for the New Year.
Today my Grand-mother turns 96 years old. She was born in 1914 and has seen the world literally change before her eyes. Her sisters are all gone, her husband is gone, her friends are gone, but her family is here and loves her very much. She has 2 great grandchildren now and loves them just as much as she loves her 3 grandchildren. She practically raised me as a child and I have very fond memories of spending time with her and will cherish those memories forever.
She is very with it, mind and body. She does have her driver’s license but the family has asked she not drive so she gave up her car about a year ago. She walks 2-3 times a day to keep her legs strong and when she is tired she uses a cane but prefers to be independent and won’t use especially when she is out in public. There are many nights she is up until 2am reading her favorite books and she just explains she has nothing to get up early for anymore so if she stays up late she just sleeps in. She is a clean freak and still cleans daily, but whatever she needs to keep going.
I think about this a lot and wonder if I am lucky enough to have those genes. I want to see what the world will look like in 2068 when I turn 96 but only want to get there if I have my mind and body. If I’m able to walk and see the world that would be amazing. If my mind works and I’m able to recall people, places and things that would make being that age worth it. My fear is that my body may give out before it is ready due the MCTD and although I carry these strong genes it may not be something I can use.
My grand-mother is an amazing woman with the best stories and has seen 17 different Presidents take office. I’m sure if you ask she will have a story about each one of them good or bad. She is a quiet woman, a reserved woman but she is always taking notice of what is happening around her. She loves football and can be found most Sat and Sunday’s sitting in her comfy chair screaming for someone she likes but her favorites will forever be Nebraska Cornhuskers and Kansas City Chiefs. Don’t even ask me how many players, coaches and general managers she has seen come and go but if you ask her I’m sure she knows. Strong mind, strong body, strong will, strong spirit makes for a long prosperous life.
Today is the day after Christmas and honestly I’m glad it is over. The holidays are a wonderful time to see family and do the fa la-la thing but when it is over there is a sense of relief.
This year since my nephew is 4 months tomorrow and it was all about him, he will not remember any of the chaos unless he watches the videos. The season was a mishmash of a lot of different “traditions” Friday night we were at my brother’s house with his wife’s folks and they put on a traditional Maryland Christmas that they all grew up with and love. The food was sweet, everything was made with sugar including the macaroni and cheese. There was corn pudding and “green jello” since everyone has their own recipe this was not green jello I was use to but it was very good. When it came time for dessert which I brought and happened to be gluten-free, it was something I could eat. The response from around the table killed me. They said they didn’t really eat sweets! I just looked at the island that held all the food that was made by them, doused with sugar, but they don’t eat sweets. I guess the idea of dessert just didn’t fit with the tradition but I enjoyed it quite a bit.
There were pictures taken at every turn and stories being told at every corner of the room. If you just sat back and watched the happenings it was entertaining. I can’t tell if some of the stories were fables or not but it’s their story and their sticking to it.
Christmas morning came and I realized that in the 7 years my husband and I have been married we have not made any of our own Christmas traditions. We didn’t buy each other gifts so there was nothing to open. I was rushing off to get my work out while he was tending to chores around the house and it dawned on me that unless you noticed the Christmas tree with other people’s gifts or the wreath, candles and many other decorations you wouldn’t know it was Christmas in my house. This actually made me sad and I did have a good old fashioned girl cry. We talked and we are going to be more conscience of starting our own traditions. In the past years we were running off to other people’s house in the morning so there wasn’t time to think about it. This year it was just he and I and no plans. We will be better prepared next year.
In the afternoon we were off to my parent’s house for some more stimulation, as though we hadn’t had enough already. My nephew spend most of the evening upset and cranky because quite frankly I think he was just done seeing our faces, hearing the stories, watching paper fly and just needed quiet. I needed some quiet too.
This morning I got up early and headed downstairs. I didn’t turn on music or the computer but rather just sat in silence. Collecting my thoughts and remember the moments I enjoyed best. I then headed to my first hot vinyasa class. There were quite a few people there for a Sunday morning after Christmas and I think we all had the same plan. Work out stress, relax the mind and stretch the muscles. Hot vinyasa is no where near as intense as Bikram and it was just what I needed this morning. The room is set at about 95 degrees so it was not very hot in there. I did wear pants and left my long sleeved shirt on for about the first hour. There was a time when I started to sweat and felt my muscles really loosing up. That was when I knew I could go further into the postures and really work out the kinks. It felt so good. I noticed there were no mirrors in this studio and they had soft soothing music playing. This is very different than Bikram but sometimes feeling the movement versus seeing it is just as powerful. The energy in there was good everyone knew I was the newbie so they helped me out a lot making sure I had my blocks and straps and other gadgets you need for vinyasa that are not needed in Bikram. The class was a nice compliment to my Bikram. I will go back on January 1 when they do a 2 hour detoxifying class.
This time of year doesn’t lack people needing a helping hand. There are so many things to be involved in and so many people that need help. A little bit of help goes such a long way and for some people it is the only joy they will experience this time of year when it comes from those that can help.
Every year our small office of 30 people gets together and sponsors 2 families that need whether they are families we know or complete strangers. This group is also a huge animal loving group so we offer help to our local shelter. As well, many of us OK me cry every time I see the commercial that asks “does every child deserve to have a pair of gloves in the winter time?” Yes the answer is yes of course, so we also get as many pairs of gloves as possible for the children need gloves campaign. We do this because it makes us feel good but can you imagine what it does for the people receiving it?
This is such a stressful time for people in so many ways and I wrote a post recently that I was stressed out. I am stressed out, but there are people that are hungry, tired, sick, and stressed. They are trying to figure out how to eat never mind how to provide a Christmas for their family. We all have our own things to deal with all year long and this time of year just exasperates the stressful emotions and feelings. I will always read about someone who is far worse off than I can even imagine.
In fact, I just read a post from a woman who is living with MCTD and she writes that winter time is the toughest time for her and she can’t do what she wants especially this time of year and that Christmas just makes her depressed. She can’t shop, bake, or even decorate a tree. She doesn’t have the stamina due to the fatigue or the strength due to pain in her body. Her story made me realize I don’t feel sorry for her because that is not what she is looking for. I think she is looking for someone to understand her. To understand what getting up in pain feels like and what fatigue can do when it takes over. I’m not surprised she is depressed, I once had a doctor say many autoimmune patients are depressed. I can’t relate to all she is dealing with and thankful that is the case but I do relate to some of it.
My hope is that she has a family member or friend that will show her the small accomplishments she can make not just this time of year but all year round and that it is just as important to be thankful for the small steps as well as the grander ones that we all want and need. She needs help as well but it is different help, she needs to know there are people out there that have similar experiences but that there is also a time and place for happiness in the midst of the pain and fatigue.