Last week I met my new doctor. She is a young female eager to help me with my MCTD and understand exactly what kind of disease I have. Most people say they don’t get enough time with their doctors but this young woman and I spent 2 hours together. She did a thorough history, examine and a lot of talking to make sure she understood what I was dealing with.
She wanted to do some research on MCTD and will follow up with me by phone in the coming weeks. I have a full blood work up scheduled and we talked about some problem areas. She doesn’t fully understand the extent of my disease but in all honesty I don’t make a move or any changes without talking to my Rheumatologist first so I’m not worried about her doing something or prescribing something that won’t work for me. I did find it interesting that for my pelvic pain she also recommended Neurontin as an option.
This subject is back on the table in my house-hold but not with open arms. We have to discuss it though since it may be my very last option.
The slightest changes can have big impacts, and not always for the better. I have been moving along nicely, keeping up with my Bikram. I have completed 22 classes so I’m finally on schedule but I have been pulling some doubles and doing every single morning. This morning I woke up feeling fatigue and for half a second thought about skipping Bikram. Not the choice I ended up making but now I’m feeling a twinge of flare coming on.
During class I got the sore throat and my legs are sore and stiff. You wouldn’t think that Bikram could put me into flare and I don’t believe it ever has. I do think that my fatigue can put me into flare and since I don’t know exactly where the fatigue stems from or when it will arise it is hard to gauge. I feel the soreness, I feel the sore throat, I also feel the fatigue but we all work through fatigue. Life in general comes with a level of fatigue. I don’t usually know if mine is a high level until I get started with my day.
I am meeting a new doctor tomorrow and I already know I’m starting at the beginning of my MCTD. Most doctors know about it but don’t have a clear understanding of it. I am curious to see what this younger doctor has to say about it and perhaps she will see it with fresh eyes. This is my new general doctor, not my Rheumatologist. I don’t know what I’ll do when he retires but thankfully I don’t have to worry about that today.
I had my 3rd and final session of acupuncture for the package I bought but I think I’m going to buy some more sessions and do a few more sessions. Yesterday she worked to relieve from fluid from my body and it worked. I still have quite a bit of fluid I’m holding on to even with daily Bikram and sometimes double sessions but it could also be the change in the season.
She noticed I had some tender areas on my lower legs that hurt when she touched them and she equates this dampness in my body. I’m still not exactly sure what that means exactly except I’m taking some herbs to try and relieve that dampness. I also have a couple of doctor appointments coming up and hoping to discuss some new options. I want so badly to get off prednisone but weaning doesn’t help me and puts me into flare so I’ll discuss if I have other options. The answer might be no but I have to ask.
Between P.T, acupuncture, daily yoga, daily exercise you would think my body would be responding and not flaring. Not the case so I’ll also talk to them about how to get my flares less frequent. I’m sure they’ll say keep stress at bay, rest when I need to rest, and eat a good diet. All things I know but I’m hoping for something else. Perhaps I’ll get the answers I so desire.
We have hit the middle of the month and I’m at 14 Bikram sessions. This means I still need to make up another session as well as get in there every day for the next 2 weeks. This task is a bit harder than I first thought but why would I make it challenge if it were easy? The actual yoga part of the program is wonderful but it takes a couple of hours to do 1 Bikram session so when I have double sessions I’m spending nearly 5 hours in the studio. That is more than half my work day.
My husband knows how much I love Bikram and keeps commenting that it good I found something I enjoy so much but just wish it wasn’t taking up so much extra time. Once I get my doubles out of the way and I just go once a day I think things will be so much better and we’ll feel like we have time together at night. Yesterday morning I started my day at Bikram and after work met my sister for an evening session. I have written previously how much I enjoy doing any kind of yoga with her and now that she has caught the Bikram bug whenever she is home she is Bikram all the time. That makes it very fun for me.
I’ll keep plugging away at my challenge and hope that I can make the full 31 classes in 31 days without missing anymore days this month. It is a tough challenge but a rewarding one if I see it through.
This past week I was hit with a double whammy of flare-ups. Having more than 1 per month hasn’t happened to me in a very long time but having 2 flares occur in the same week hasn’t happened in years. I had a full blown flare last Saturday that put me in bed for the entire day. The flare consisted of pain in all joints, shakes, fever, sick to my stomach and a severe headache.
I thought I was better and proceeded with my week as normal but on Thursday of the same week the exact same thing happened. This flare put me in bed for 2 days. I very rarely end up in bed for more than a few hours so I know I had pushed my body to an extreme. I believe it had to do with traveling for 2 weeks, emotions over my grandmother, stress from work and life in general and I just didn’t listen very well to my body so it yelled at me and forced me to stop and take notice.
I kept up with my modified Bikram program and forced myself to walk 5000 steps every day which meant time in bed and a little time moving around and more time in bed. If I don’t constantly keep moving my joints just stiffen up even more and it makes it harder to get going later. This way I know even if my body says it doesn’t want to move my brain is much stronger and says it must move. This is what keeps me going even though I know I will always have these flares. As long as I can move slowly and put one foot in front of the other even slowly and gingerly I know I can overcome the tough times. Mentally I need a break like everyone but I don’t allow myself the break because then it makes it easier to let myself off the hook another time and my ambition to be better is what keeps me managing my MCTD on a daily basis.
This weekend I wasn’t running any races but I was living life at my normal and out walking the golf course with my mother. I wouldn’t say I was hitting the ball well but I was out there and giving her great tips and making her golf game a lot better. Life doesn’t stop even if I don’t feel well so I have to keep going as well. My husband just hugged me this weekend and said I don’t know where you find the strength but I’m so proud of you. I love hearing those words.
To all my female readers who are mothers, Happy Mother’s Day. Today is such a special day to honor the special women in our lives. My mother is so very special to me and usually today I would be doing the Mother’s Day 5k with the women in my family but we are taking my mother golfing instead. It is a new hobby she has taken up and since she has fairly athletic children we think we can keep up with her.
I haven’t golfed in over 10 years but I’m certainly willing to try it again for her. There isn’t much I wouldn’t do for her and hitting a little white ball with a club is certainly pretty easy to commit to. I’m looking forward to spending a few hours with my mother and my siblings. The four of us have not done anything like this before so it will be really fun. Usually we have the entire family there but this morning it will be us four and we’ll meet up with everyone else later.
Hope you all have a really special day and get to do exactly what makes you happy.
Happy Mother’s Day!
Every once in a while I start a new challenge and try something new sometimes it works out well sometimes it doesn’t but I won’t know until I try. This month I’m going to do 31 Bikram sessions in 31 days. Unfortunately, I was traveling the first few days of May so I was already behind and when I decided to take on this challenge but I’m not worried. No, I won’t be adding days to the month, I get a lot done but even I can’t do that. I will however pull some doubles which I have been begun to do so as of today I have done 6 Bikram classes and will need to make up the difference to get on track to achieve my goal of 31 classes in 31 days.
I’m doing this for a few reasons. I really think the more I do it the more it is helping. I find this a bit ironic since I just had a flare-up and trying to get back on track from that but honestly it really does make most days feel much better for me. Also, I think the more I do it the less stress I feel and since this is considered our “busy season” with my job I can use all the stress release I can get. Finally, the more I do the Bikram yoga the less I pound on my joints at the gym which has to be a plus. The downside is that a 90 minute Bikram class every day and sometimes 2 takes a lot of time away from my husband but he knows the benefits I get from it and is willing to see my achieve my goal for May but then I’m guessing will ask me to spend more time with him in June which I will be more than gladly to oblige.