Monthly Archives: September 2011

ENDURING A FLARE

After a grueling trip back home I had every intention of enjoying a quiet night with my husband and instead I spent the night in bed with a full flare.  I had not had one in 310 days but I knew it was coming and got myself to bed so it could happen and I could just endure the flare and get it over with.  They are not fun but considering that I might be able to go another 310 days or even longer before the next one gives me some hope.

Today when I wrote in my journal I was back at zero. Tomorrow I’ll be at 1 and my journal entries will continue from there. I have increased my prednisone just long enough to feel strong once again and I’ll go
back to 4.5mg when I’m stronger. It is the last day of the month and the last day of my challenge and unfortunately I did not get any exercise today but it was more important that I just take it easy and
get my strength back. Tomorrow I’m hoping to feel much better and get into the Bikram studio to relieve some more of this fluid that I’m carrying in my ankles, knees and hips.

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HOME SWEET HOME

I finally made it home after sitting in the PA airport for nearly 12 hours.  I reached  deep inside myself to find my yogi tools and practiced that deep breathing.  There is nothing like home for me. I have such a good routine with diet, exercise, and sleep at home that when I travel it all goes away no matter how hard I try to keep it in tact. I did get up every morning and went to the fitness club in the hotel.  Most fitness rooms at hotels have nicer equipment then even my gym.  I am usually the only one in there but this time there were
2 other gentlemen I could rely on being there at 5am right along with me.  I got in an hour every day and today when I finally landed I came right home grabbed my stuff and went to Bikram.

My body was so stiff and sore and my skin was hurting so I knew I needed to hit the Bikram studio for some good detoxing.  I was a little sick after no sleep, barely any good food and a body that felt like it had been hit by a truck so I had I to sit out a few postures.  After all this time I would consider myself a veteran but even the people that practice regularly find themselves in situations where Bikram is just tough.  Good, but tough and today was one of those days for me.  I will get back in there tomorrow and probably pull a couple of doubles over the next few days just to get some flexibility back into my body.

Tonight I am very excited to see my husband and be able to just sit and relax with him and find out how his week went.  Quiet is the key for me.

THE STRESS OF TRAVELING

            Today I’m getting on a plane and traveling this week for work.  Travel in general makes me stressed, tired, and frustrated.  I am already on the brink of frustration after my melt down yesterday but today is a new day and whether I feel like it or not I’m traveling. The stress can cause more harm than anything else so now is the time for my yogi tools to kick in and help me find the calm as I pack my bags and get ready to leave behind my husband and my kitties for a few days.  Although it is only a few days I still don’t like doing it.  We have a nice routine at our house-hold and interruptions don’t do anyone any good.

            Part of my melt down might have been from the stress of traveling.  What I should have done was get up and get a nice long workout but I really needed some rest this morning so I only did 60 minutes this morning.  I will be able to walk around the airports but I won’t count that as exercise time.  That will just be energy I’m burning off in hopes of staying peaceful.

THE BRAIN IS A POWERFUL WEAPON

Before my doctor’s appointment last week I was feeling incredible. I had thought that I had figured out MCTD and was so excited by my new success.  I was talking to the doctor and as you have read in my
previous blog that I was so sure that my blood work was going to come back better then it had been before.  How can I go nearly a full year without a flare-up if my blood work wasn’t changing for the better?  As you also read my blood work was exactly the same. No scientific method to my success. I understand the power of positive thinking and use it daily as I manage a life living with MCTD. I also understand that my brain can become a powerful weapon against me as well. This is exactly what is happening now.

Since Thursday my husband has been asking me what is bothering me and I keep saying nothing and became pretty defensive yesterday when he asked me again and I didn’t have an answer for him.  Well this morning I had an answer not only for him but for me also. 

I decided to go to the gym instead of Bikram this morning and while I was on my elliptical machine my brain actually was telling me to take it easy because I’m sick.  What is that verbal garbage I was just feeding myself? It was strong enough that I got off of the elliptical and moved to the treadmill.  What was I thinking to myself, about myself? Where was this coming from?  I turned off my music and just walked and thought about what was happening with me.  I realized that ever since I saw my blood work and realized it was exactly the same as in March and last year and the year before that I was convincing myself I was sick. I don’t think of myself as sick so why would I do this now? Was I erasing the last 307 days without a flare and convincing myself that I was indeed sick? Yes I was and not only was I doing this I was depressed over it which is what my husband was picking up on the last few days.

I decided to turn back on my music and run, I know my body can do. I haven’t run in a very long time because honestly it isn’t good for me or my joints but I know I can do it so I did. I ran, and ran and ran
for a very long time.  My breathing was labored but I felt fine. I was sweating like I was standing in a Bikram studio but I felt fine.  I decided to get off the treadmill and hit the weight room. I know I’m strong but I had so much to prove to myself today.  Did I way over do it, probably but the point is I can.  I think of myself as a
woman who lives with and manages MCTD but I had forgotten my own strength. I was getting it back today. 

I got back on the elliptical and knocked out a regular workout without negative talk.  I ended up doing 3 hours this morning at the gym.  I did Bikram yesterday for 90 and did 2 hours on Friday. This is not
the ability of someone that is sick this is the ability of a woman who knows she is strong. 

I got home and had a melt down. I told my husband the negative verbiage I was telling myself and how defeated I felt from seeing my blood work. He let me cry and let me talk and let me sit quietly for a
minute and then said can I tell you what I see?  He is very good about just letting me have my feelings and my emotions without trying to help me. Sometimes I don’t need help I just need someone to listen.  Once I have gotten all my stuff out and had a moment to reflect then he jumps in with his thoughts.  This is why our
relationship works so well and why I love him so much.

IS IT ME OR EVERYONE ELSE?

            Do you ever have those days where you wonder if you are in a brain fog or if everyone else around you just doesn’t make sense? I’m feeling that way today. I honestly don’t know if the people around me aren’t communicating well or if it is me not understanding. This doesn’t happen a lot but when it does it is a little bit frustrating. Perhaps I will get out of this fog soon.

            Yesterday I had walking on my mind since I was starting a walking program at work and spent 120 minutes walking with Leslie Sansone in the morning and then had a nice 60 minute workout at lunch time. I’m logging 180 minutes for the day.  When I have days like this I am logging about 25K steps on my fitbit that is really fun to see.

            I had my doctor apt this week and I was so sure that my blood work was going to come back looking different. I have been feeling so good and my body is very strong these days.  I’m at 305 days without a flare and yes I’m in a fog but physically I am very healthy. I thought I had found the power of mental healing and that my ANA count would be very different.  I asked for my labs so I didn’t have to wait 6 months and I got them today.  They are exactly the same as 6 months ago.  I still feel that there is something to the power of mental healing but obviously I don’t have scientific proof just proof within myself that I feel so much better. My exercising is different and I’m not pushing my body to extremes like I was before. I have changed the way I eat by not eliminating gluten, sugar, or dairy but changing to eating more whole foods and less processed and that is helping me feel better. I wanted the science to be my back up with my conversation to the doctor but I can’t say I have science I just have feelings.

STARTING A WALKING GROUP

            This month is almost over and I have enjoyed having a challenge to keep me going especially as the weather changes and the holidays come upon us.  This lead me to ask the question of some of my co-workers if I put together a walking group for Oct would they be interested.  To my amazement they were very receptive and that got me thinking that with the change in the season it isn’t likely we can walk outside after work but we could do an indoor walking program. I have been using my Leslie Sansone indoor walking DVD’s this month for the days when I just don’t want to go to the gym or to the Bikram studio and I forgot how much fun they can be.

            I dusted off the whole stack and found that I have quite the collection of her work outs that range from 1 mile to 5 mile and everything in between.  I have bands and hand weights and other boosters so if people need them they will be available and I am getting pedometers for everyone so they can watch their steps tick tick tick up and keep them motivated.  After a month we can see how everyone feels but my hope is that they will enjoy this type of work out and doing it with other people helps keep people motivated as well.  I feel as though my co-workers could use a little motivation and it is obvious to them that I keep fit but perhaps I can help them be fit as well.  It is worth a try and as we go along I can always change things to make sure it continues to work for people.   No fear of the holidays this year.

            For my challenge I did 30 minute workout with a 90 minute Bikram practice yesterday and logged 120 minutes.

DOCTOR APPOINTMENT

            I had a great doctor’s appointment. He was very pleased with my progress and my 303 days without a flare-up.  It is hard for him to imagine that I know exactly the day I’m on but I journal every day besides also writing my blog. I have a very good grasp on what my body is doing and what triggers it in certain ways. I also take my health very seriously on a daily basis and when you are that connected you know these things.  He was impressed with my progress and mentioned that there were 2 new drugs out on the scene in terms of autoimmune diseases and that his office was testing a 3rd drug.  This is what I have been waiting for.  I prepare myself for every visit that there will be new developments and ideas and moving forward.  However, not every new development is right for me. I had already heard and blog about one of the options the BAFF option. The other one is similar to BAFF as a blood infusion drug done in the hospital or doctor’s office.  Their office is a testing their own version which is a self injection much like an epi pen.  All three of these drugs are designed to slow the progress of B Cells or quiet B Cells so our bodies don’t need to make antibodies or ANA’s to quiet them.  Sounds great, I’m thrilled that they are developing new drugs but these are not for me. 

            He said I was actually doing too well to start something like this.  Right now I’m taking a low dose of prednisone and plaquenil is not considered harmful to people other than doing some eye checks and making sure other things aren’t happening.  If I were to switch to one of these other new drugs we don’t know what would happen short term or more my worry, long term.  I don’t want a short term success for long term illness. One of the drugs is actually designed for cancer patients.  I have to believe anytime a drug kills cancer it is killing all the good in the body too.  I will keep watch and see how these drugs do over time but for now I’m sticking to what works for me.  I am very interested in quieting B Cells and will do some major research on this.  We talked about the fact that there could be a real connection between mind and body and quieting of B Cells. Obviously no science that he knew of but my research hasn’t begun yet. 

            In terms of the challenge I did a double dose of Bikram yesterday which was so good.  I did an early morning session and an after work session.  The 2 classes were very different but both so good.  It actually allowed me to have a more relaxed evening and I felt like I slept better too.  I will try to get in a few more of those double doses as the winter season approaches and I need the warmth for my body.