Monthly Archives: March 2011


  Yesterday it turned out to be 50 degrees here in Portland Maine and that to me says get outside and enjoy it. The sun was so bright at lunch time and a perfect time to take a walk. I was able to get some fresh air and feel the sunshine on my face. With my music and sneakers I just headed out and walked for the hour. It was a perfect lunch break and just what I needed to get me motivated again for the afternoon chaos. We have a nice walking path by where I work that is 4 miles round trip. It is just enough for an hour and there were so many people out there enjoying the day. You could see the hope in everyone that this is just the beginning.

 I’m sorry to say we are due to get snow again tomorrow so my daily walks outside are not upon me yet but I have hope it won’t take long now for the season to make the change and really be spring here. I love being outside and can take my time or do a brisk walk and it really depends on what I need at that moment.

 It turned out to be a perfect day for me starting in the Bikram studio and really able to develop my practice. My strength is back and although I’m still struggling with my balance a bit that will come too. It all takes time and life in general is a practice.



  I had a PT appointment yesterday that was really good. She worked on my immune system and overall connective tissues. It seems like a generic thing to say but as she was moving the energy around I actually found that I was getting really warm. Ok, I know I have said the prednisone is giving me hot flashes but this was something different. I went with pretty severe Raynaud’s and it only took her a couple of minutes to make my fingers pink again. She actually did it by moving energy at my feet. The whole body is connected and she finds the focal point for my practice and then proceeds. This week I need to work on my spleen before I see her again. There are certain organs that hold energy that needs to be released and honestly I enjoy when she gives me home-work because I feel like I’m taking control of my health in my home and making a difference. The homework part of my therapy is 20 minutes of holding different areas to move energy around and improve immune and connective tissues. This week is about holding my heart and spleen for 20 minutes at a time for a total of 3 hours. I don’t have to do 3 hours of consecutive holding just 20 minutes consecutively and a total of 3 hours over the course of the week.

The hour I’m in there with my PT goes by so fast. We are always talking about the books we are reading and can get caught up in conversation quickly and before I know it the hour is over. I always have a refreshed feeling when I leave there. The energy movement releases fluid from fingers as well and my rings always slip around so I know the swelling has gone down. I get great pleasure out of my PT appointments and hope I can continue to go on a weekly basis until my insurance says no more. I’m sure that time will come quicker than I like but I’ll deal with it at that point.


  My challenge is finished. I started in the Bikram studio yesterday morning and couldn’t finish this challenge on a bad note so I pushed myself and squeaked out 12,102 steps yesterday. It is much hard to find time for cardiovascular exercise when I’m in the studio. I have said many times though I love being in there for the 90 minutes sweating, working hard, and find focus.

My favorite instructor has chosen to move on to “greener postures” and find a new studio to teach at. I miss her already but it this will force me to get use to other instructors. The concept behind Bikram yoga is that it is the same 90 minutes every time you go in there. The same 26 postures done in 2 sets. The criteria that changes is the heat in the room, the humidity in the room, the other energy from the other yogi’s in the room, and finally the instructor. Perhaps they hold a posture a little longer or push you a little harder to get into final expression. The instructor is the key to a successful practice just as much as you yourself are key to a successful practice. I certainly enjoy other instructors teach styles but I had my favorite. I have let her go and moved on and now I need to just focus on the fact that every time I go in there I will probably see a new instructor until they find a full time 6am person.

I’m thrilled because they have decided to add 6am to the Tuesday and Thursday mornings as well. This would allow me 5 days a week to start with Bikram or to change up my schedule if need be. I’m usually in there 3-5 times a week but could never make it to a Tuesday or Thursday class this way I could go 7 days a week if I wanted or go when I can. It just opens up a lot of possibilities for me and honestly I think Bikram is the best for my joints and muscles, maybe even better then my physical therapy on some levels. Because I have joined a Bikram studio as my primary yoga I have to go to other studios for hot vinyasa and other types. I think a regular practice of Yin yoga would be great for my long term joint therapy also but I don’t know that I would have time to fit it in on a regular basis. There are so many types of yoga and I like the intense but sometimes we all need a little meditation too.


  I woke up this morning feeling so rested. Finally, I had a great night’s sleep and many hours worth of it. It has been a while since I woke up feeling really well rested. Perhaps this is the first step to being back to myself and getting the high level of prednisone out of my body. I’m still round in the face and bloated but that too will come with time. It doesn’t take long for me to feel bad on higher levels but then again it doesn’t take me long to start feeling good again also.

Yesterday I started in the gym and I was the only one there for about ½ hour. Perhaps everyone is enjoying basketball or even better just sleeping in. After a quick workout on the elliptical I headed over to hot vinyasa. The studio was very inviting and beautiful. There are typically no mirrors in hot vinyasa classes so I just pick a spot regardless of who is around me since I don’t need to see myself. There were very few people there so I got my choice as to where to put my mat. I’m a front of the class type person and find if I’m in the back I’m missing out.

It isn’t very hot in there but warm enough to take the outside chill off. I left my jacket on for a while but once we got flowing through our sun salutations I was warming up and my jacket came off. When I started my hands were purple right down to my knuckles so once I warmed the pink came back. I know people notice, how can they not? If they don’t know about Raynaud’s it must seem really odd to them. I did much better with my upper body strength but still have work to do with it. I felt so good afterward and will be back there soon.

The rest of the day was enjoying our Maine Maple Sunday. It is the last Sunday of March when the maple syrup farms open up their business to the locals so we can buy fresh maple syrup, enjoy a pancake breakfast or indulge in maple ice, candy and other maple treats. We went in the afternoon since we didn’t have interest in the pancake breakfast and although I really wanted the ice cream it is just too cold. It is a nice way to bring locals together on a cold March day. You need your boots because the mud is ankle high but you are on a farm after all. All in all I got in 13,512 steps yesterday.


  Yesterday I had a whole day planned for getting stuff done around the house and running a bunch of errands. Once I got home from Bikram I decided to just rethink all that and take it easy instead. The Bikram helped with my stiffness so I felt great when I got home but I was at a high level of fatigue and didn’t want to push it. Instead I spent some time in the kitchen. I took my time and really didn’t see this is a chore but more of a therapy.

I’m making a soup today for a late afternoon dinner and therefore wanted fresh bread. I made my bread yesterday and it smelled so good. I also made hermits which I have posted about before and they are just incredible. You have to like clove to enjoy a good hermit. My favorite is a cup of tea and hermit or 2 maybe even 3!

Being in the kitchen when you aren’t rushed and have no where to go really just feels good sometimes. I got a couple of meals done for the week and just had a relaxing day. Ever notice how when you are cooking the time just flies by? It was evening before I knew it and we were getting ready to sit down to a nice a dinner and a movie and bam another day gone. I don’t know where the time goes but it goes by quickly.

Yesterday I was able to get in 12,962 steps and honestly looking forward to end of this challenge. I like the focus but I’m ready to focus on something different now. I am trying a new hot vinyasa studio this morning after I get in a quick work out at the gym. I like trying new studios and new instructors although the vinyasa is probably the same every experience is different.


  How a day can change. I woke up with severely swollen hands the size of mitts and my fingers are little jimmy dean sausages. I was so eager to drop my prednisone and get back to my regular dose that I think I went a little too quickly. I did it on my own and didn’t consult with my doctor. Rationally I realize this is not a good idea but really I thought what was the worst that could happen? I put my body into a tail spin and caused my joints to flare a bit. Along with the swelling I also have some soreness and stiffness in my joints this morning. It reminds me that even after 127 days flare-up I could put myself into one really easily. I do not want that.

I’m starting my morning with some quiet time right now and a little walk before Bikram. I think the heat will help with both more fluid reduction and the relieve some stiffness. I won’t push myself too hard in Bikram and may do partial poses just to make sure I don’t over do it and cause a flare.

Mentally I feel so much better. I was so worried for so many weeks not sure what was happening and what would be coming at me next. Just to get the word from my doctor that every is OK and looks good I can mentally just let all that stress go. I am sleeping better and waking up more rested. I haven’t had enough time with the iron supplement yet to feel any real affects there but that too will come with time.

I’m looking forward to enjoying time in the Bikram studio meditating and relaxing while allowing my body to strengthen and heal. I’m now ready to get back into the studio regularly and since I’m coming to the end of the challenge I can put a lot more focus into Bikram and other types of yoga. I love the experience I get at all kinds of yoga studios and enjoy trying different types.

Yesterday I didn’t do well with the challenge because I was in the Bikram studio yesterday morning as well and didn’t get another chance to work out so I’m sorry to say I was below 10K. I think this is my second time. On the days I hit the studio and don’t get a chance to work out again later in the day it really shows. It doesn’t mean I’m not doing anything but when you are counting steps and keeping yourself accountable it is disappointing.

With that said I can do both get in the studio today and get in my steps so I won’t be disappointed tomorrow when I’m writing about challenge.


  This month the FDA approved a new drug to help with Lupus called Benlysta. I have attached the FDA website here for further information if you are interested.

This is the first new drug to come on the market in 56 years. Interestingly enough the last drug to be approved for Lupus was Plaquenil which is probably the most prescribed medication in cases like Lupus and MCTD. Of course along with this new drug come all the possible side effects which are to be expected but I’m just glad they are still working on new treatments, medications and therapies. My hope has always been to have cure in my life time. I have an incredibly long life line in my genes if my disease stays at bay and doesn’t progress to my internal organs or the medications I take don’t where down my system. I’m also hopefully that if a cure is not found a therapy of some sort for remission will be found and that I can hope for sooner rather than later because I believe with the genius minds out there they are already working on it.

Medicine has come such a long way in a relatively short time period time. This gives me great hope for more successes in the realm of autoimmune diseases and what it means to people like me. I must admitted I’m a little leery of an intravenous transfusion but if my doctor sat me down and honestly thought this would help me I would have no choice but to consider it. I have said “no” to many doctors in the past but I have only said no to my trusted Rheumatologist twice in 7 years. The first time was when we talked about just upping my prednisone every time I felt a flare-up coming on. I didn’t and I don’t feel comfortable with that since my body and psyche go into distress mode at higher levels and I have worked so hard to get down to 5mg and although I have not been to go below 5mg I feel like I can manage 5mg. I’ll be at 5mg again very soon this round too.

The next time was recently, this past Christmas season to be exact. I didn’t actually say no but he thought it would be a good idea for me to increase my procardia to 60mg from 30mg to help with severe Raynaud’s. I said I would try it and if I had any swelling in my ankles and feet I would stop and go back to 30mg. If I can’t get my sneakers on or even walk comfortably that is worse for my psyche then racing hearts, hot flashes, irritability and vicious mood swings. Sure enough it took 2 doses to figure out that wouldn’t happen. I decreased immediately and went along time with very manageable Raynaud’s. When I was in his office yesterday he looked at my extremely purple hands and said you are still at an extreme level. I think he was thinking with the prednisone and getting rid of the rash that the severity would go away as well. He didn’t mention making any changes just said we would keep a close eye on it. Fair enough, I’ll keep a close eye on it especially since it is staring me and everyone else I come in contact with right in the face. There isn’t a real good way to hide purple hands.

I had a great work out in the morning and didn’t have any appointments so I got a killer work out at lunch time and I logged 16,987 steps for the day. Another successful challenge day. To treat myself I finished my day doing hot vinyasa and I must admit it was a challenge. I have lost so much upper body strength recently that doing poses like downward facing dog and other poses that require wrist, arm and shoulder strength were very difficult. In time I’ll gain that back too. I focused more on the quiet and heat and did a lot of resting in child’s pose.