Last night I attended my weekly warm yoga class. Despite the fact that it was in the 20’s the studio actually had some heat to it. Since I’m an avid Bikram practitioner it can always be warmer for me but it was comfortable last night. We worked hard doing binds and twists as well as my nemesis pose, crow. I feel really good after an evening yoga session and have 4 booked for this week.
The evening classes allow me to sleep better if that is possible. I deal with fatigue so sleeping for me comes naturally but sometimes I wake up still feeling fatigued. After a yoga session the night before I wake up feeling more refreshed. This allows me more energy in the morning to start my day and get things done before the rest of the world wakes.
Last night she said our most creative time is usually at night and suggested we keep a journal by the bed. I have a journal with me all the time other than my sleeping hours but now I’ll keep it by my bed in case I do wake up with something on my mind that needs to hit paper. Could be creative or could be something that might be bothering me but either way I can get it out of my mind and on paper. The more I can free up space in my mind the better off I’ll be. We tend to just hold on to so much useless knowledge. I’m working on releasing some of that.
Tonight is Yin Yoga which I’m looking forward to taking at this studio. I haven’t been to her Yin class yet and although I’m familiar with Yin everyone is a little different in the instruction of it. It is an opening practice and I need help opening my hips. I’m hoping my husband will join me but if not I’ll go and get my Yin on!
I’m back into a routine of seeing my nephew, who we refer to as Mr. Big, regularly again. I love spending time with this little boy and as he gets older and more talkative he is so much fun. He does get frustrated because we are trying to figure out what he needs and he believes he is letting us know exactly what he needs in the way that we should understand. For 17 months old he is vocal but still not clear enough for us to catch all the things he is trying to communicate to us.
My husband is very good with him and will just wait and wait until they are on the same page and communicating. My approach is that I will try offering him different things trying to figure out what he wants so I don’t stress him out. Neither way is a great way but it works for us for now. My favorite part is when he is a little sleepy and will read a little bit or when he wakes up from his nap and cuddles for a minute or two. This does not last long since he is off and running to find something to occupy his time.
He is such a little runner. I hope he runs track when he gets older and maybe we can sign up for runs together as a family. Every year we do the Mother’s Day 5K, the day he can actually do it with us will be great. He is there now just in his stroller and not really digging the time it takes. The next few years hopefully he will learn to like it and put up with this Grammy, aunties, and mom for a little while since we run slowly.
Until then I will just continue to chase him wherever he goes. I get to keep an eye on him and log steps at the same time. He doesn’t understand why I chase him but he sure does love it.
Amazingly enough the prescription strength Niacin is working. My hands are feeling better and hold the pink color longer now. I still have moments of purple but the severe purple is going away. The over the counter Niacin I was buying was flush-free but the prescription strength is not flush-free therefore my cheeks and my neck are also pinker.
Yesterday I took my Niacin at the same time as my other meditations and headed off to work. About an hour after being in my office my skin was burning. I walked into the bathroom and from my head to my feet it looked like I had a severe sunburn. Sad to say I have had many sunburns against medical and family advice but when you have red hair, freckles and blue eyes a minimum amount of sun causes a burn. My body looked like I had been in a tanning bed way too long. I walked back into my office and made 2 phone calls.
First I called my doctor and said I think this is Niacin related but please just touch base with me and reassure me things are OK. The 2nd call was to my mother to say I have a meeting in an hour when will this go away? She works at the hospital and said she would ask the doctors over there and call me back. Both my doctor and my mother called me with good news, this was temporary. I was thankful to learn it would go away especially since it was actually uncomfortable sitting in my chair on my burning skin. I could not go to a meeting looking like this so I was a little late but when I got there I had a subtle tint of pink not a burning red color to my face, neck, arms, and hands. Within an hour and half it was completely back to normal.
I need to take this medication in the middle of a meal and that will slow down the rush of blood and the flush won’t happen so quickly and severely. I went to Bikram this morning so I didn’t need any Niacin today. I won’t need any tomorrow although I’ll test the food situation just to make sure so when I take it again on Monday I’ll have an idea of what to expect.
Lastly the higher dose of prednisone is helping with my thumb so all in all I am showing progress in my hands.
Last night was week two of Intro to yoga with my husband. Last week there were 17 people and my husband walked out of there saying some people won’t be back because it was challenging. He was not one of those people. I’m happy to say he put on his yoga clothes and we headed up there after work last night together. Half the class did not return this second week which is a blessing a curse. The blessing is that our instructor was able to give more one on one attention to the people that did return. I am thrilled about this because it means my husband can get some attention and progress in his practice even quicker.
The curse, ok not really a curse but a challenge is that while we were set up in some of the more challenging postures such as Warrior I, Warrior II or Triangle she would come around and just position everyone. Form us better in the poses and give the new people a chance to see what it really feels like to be in the pose correctly. As she is repositioning people you realize you are in these demanding postures for quite a while. It was time to breathe and send some breath to the areas of the body that were screaming to come out of the pose. Part of the practice is that if you are already thinking about coming out of the posture you are sending your body into anxiety so stay calm but if you get to the point where you need a break, she kept saying take a break. My husband and the rest of the new beginners in there were exhausted by then end of our 90 minutes and honestly they worked hard. I worked hard and I know what I’m doing. These people did fantastic. I hope they all return and this can be our core group. I think my husband is learning a ton and enjoying it even though he is exhausted. He has never slept better than the nights we have yoga.
The real challenging pose was “flip the dog” she walked us through how to do and then watched as we tried. I was able to flip my dog but that was the first time I had ever seen that posture so even I was knew with that one. Although I have had a lot more time strengthen my shoulders, wrists and arms. That was a killer posture for some but they all tried it. Sure we fell, but the key is to get up and try again. My husband said that at one point when I flipped my dog a couple of women behind me said “oh goodness sake was is she doing” I focused so didn’t hear it and my husband just laughed to himself and said my wife will try anything.
This is not a political blog, therefore, it is not my intention to write blogs about MCTD and the politics of it. However, there is a cost to having an illness. Any illness for that matter comes with a high price. There are many people that make decisions about food and medicine all the time. I am one of the fortunate ones that have good insurance and doctors that work well together. My frustrations are limited and my yearly budget is based on what I believe I will need for the calendar year as far as my health goes.
The day I left my doctor’s office with my prescription in hand since I am no longer taking procardia and instead taking a prescription strength Niacin extend release I went to the pharmacy. To my surprise this one prescription was more than all my other prescriptions put together. I get 90 day supplies on everything but this Niacin is only allowed a 30 day fill and the price is unbelievable. I could have 8 physical therapy appointments or 30 days of this medicine. Those are the types of situation that other people probably run into every day.
Many people are faced with decisions as to whether to accept the high priced medicines or not. I had a long talk with my husband and I already knew what he would say even before he did but these are the types of things we need to discuss as a couple and a house-hold. He doesn’t believe there is any price when it comes to my health but he wouldn’t say the same about his own. Interesting!! My husband is extremely healthy and if he gets a cold a new decade has gone by but he would put up a fight if it were him and this expense. He would think of other ways to get around it. I have other ways around it, but it means sacrificing myself for headaches and so in the end we are making the decision to pay the price and get some color back into my hands.
There are many illnesses out there that people live with and I know they have extremely high health expenses to contend with daily. I am fortunate enough to be able to put my money towards things like yoga as a type of therapy for me. If only my insurance would recognize it as such and help with the expense. I have even reached out to flex benefits but of course their guidelines have change drastically in the last year. It all comes back to saving money for everyone. I want to save money, they want to save money and together we just do what we can and the make decisions we need to make.
They don’t know how I got MCTD and probably never will know but I wonder if I was making different choices when I was younger would or could I have changed the outcome of today. I will never know but I do hope to be in this world when and if a cure is found and I might actually be free from MCTD.
Last night I started a warm intermediate vinyasa class. This is through the studio that my husband and I have frequenting often and I’m finding more and more classes to attend. The instructor makes yoga so fun and challenging and spiritual for me. It offers me all the aspects I’m looking for in my yoga practice.
This class started with her saying this is not a beginner class and this is not hot yoga. The temp will be right around 80 degrees and we will be flowing quickly. The class was so much fun. There were about 20 people that signed up for the class and about 8 showed. I was ok with the drop in the number as I had room to spread out and let my zen flow. I was moving through the postures with my breath and feeling like I really knew what I was doing.
The practice of yoga takes a long time and the confidence comes a little more with each visit to the mat. I’m not experienced in anyway and wouldn’t dream of thinking so but I did feel as though I had found a nice rhythm on my mat last night and the time went by so quickly. One of the things she says is that we should think of time when we are on our yoga. Sure we have things we need to do and places we need to be so we live by time but wouldn’t it just be fabulous if time was not an issue?
We kind of treat our yoga classes that way with this particular instructor. She starts a flow and will never break a flow or skip a side just to finish up and we always take a nice relaxing savassana so yes we run over and I’m certainly more than ok with that. I don’t know how other people feel about time but for me when I’m on my yoga mat and if 2 hours have gone by but I feel like I’m working hard and finding a rhythm I would much rather stay focused on my practice instead of the time we need to end.
The last week or so has been great fun for me as I am trying all these different classes and reaching new levels in my practice. I have a couple more classes besides my regular ones this week and looking forward to seeing what happens.
After about a week I’m finally back to doing Bikram. I went twice over the weekend and sure enough had to start over. Every time I take sometime off from Bikram I feel it. I was a little light headed the first time but thankfully the 2nd day I did the full 90 minutes without issue. My instructor is so kind and just reminded me that this is not an easy practice and part of what makes someone have a decent practice time and time again is time spent in the studio.
Sweating did take some fluid off my fingers, but unfortunately not my thumb. It is still huge and sore. Due to this huge swollen member I need to make the decision to increase my prednisone. Putting aspercreme and wearing gloves is not enough to make the difference I need. Tomorrow is the day I increase and will need to stay at the increase for a minimum of 4 days. After 4 days if I feel better than I can start the decrease but not until my thumb feels like it is getting better or is better.
I don’t take making decisions like this lightly but sometimes they are decisions I need to make. I noticed that while in Bikram I was being gingerly with my hands and especially my thumb and during my practice is when I decided that I would increase my prednisone. It is more important to me to have working hands and to feel less pain and be able to do what I need to do in regards to life than it is to be proud and just not increase my prednisone. I understand the risks of increase and I understand another set of risks if I decide not to increase.
The Bikram practice is my best shot had reducing fluid and reducing stress. My other yoga also reduces stress and helps me find balance and focus. I really need it all, I need my Bikram, my MBT therapy, physical therapy and just regular fun vinyasa to make it all work. Of course I also need the cardio and weight training so yes it seems like a lot but it is the stuff I do that keeps me flare-up free for long periods of time. Today is 83 days for me and although it may not seem like a lot it is. My goal is to make sure I get 5 Bikram sessions this week and get back on that track.