Dancing With Multiple Sclerosis

Small setbacks

2011-07-13T21:35:00.000-07:00

I've had a setback and seem to be relapsing. It's frustrating to say the least. Walking was nearly impossible for the last week or two but things finally started to improve yesterday. Today is a little worse but I'm still better overall. I've also lost a lot of sensation in my right arm and it goes from painfully tingly (mostly in my hand) to a dead feeling. None the less, I am trying to stay optimistic. Fatigue has been the worst of it all for sure. I am happy that my eyes aren't getting worse. I find O.N to be the most frightening M.S symptom for me.

Last night my dear friend was hit by a car while on his bike and needed stitches in his face. I went to visit him and was up until 2am doing so, which I think is the reason for my little setback today. Anyhow, I have to say that I am just grateful my friend is ok. I'm hoping tomorrow is better, and that my legs and arm will remember they have a job to do. I know I just have to keep optimistic and take it one day at a time. M.S sure does like to keep us guessing!

The Swank Diet

2011-06-22T14:03:00.000-07:00

All the medicines that I have tried for pain and symptom management thus far have been fairly ineffective for me. Fed up with daily pain and fatigue, I decided to try the Swank diet once again. I tried this diet when I had my first post-dx relapse but I only stuck to if for a matter of days before slipping and eating cheese, chocolate and sweets- all the things I love the best! This time I am trying to give it a full 100% and already I feel more energized, am sleeping better and pain has been quite manageable.
The basis of the diet is that it is very low fat. That is the clif-notes version. Paring this with my usual gluten-free 'anti-inflammatory diet (very helpful for my RA) means that I have to be really creative with cooking and preparing meals. I have been baking a lot and finding new foods in the process. It is actually quite fun! I find myself reaching for fruits and veggies more and eating fresh, healthy meals. I am thankful I have the energy to dedicate to cooking, that certainly makes operating on the Swank program much easier. If I had extreme fatigue I am not sure how I would do this diet. An excellent result of the diet however seems to be that it helps with fatigue so I am not having the exhaustion I was fighting weeks ago. I am really feeling the best I have in a long time. I hope the results continue!

Anyone else out there tried the Swank diet or a similar nutrition plan?

Exercise and Empowerment

2011-06-16T11:05:00.000-07:00

Lately I have been trying to find ways to empower myself. I know, that sounds like a big pot of swiss, gouda and cheddar- SUPER CHEESY. But I honestly do feel that with an unpredictable disease like M.S, we should take every opportunity we can to feel like we have some sort of control over our lives.

I have found that the best way for me to feel like I have some sort of say in my disease is by developing a plan, and sticking to it every day. For me, that involves a healthy diet along with an exercise plan. Also, setting aside time for stress-busting meditation, and taking the medicines and supplements that I know will help me. Of these things, exercising daily is most certainly the hardest.

A little background on me: I grew up dancing and dance has always been my passion. I danced all though college and even through bouts of optic neuritis and neuropathy. I was also an avid runner, with four marathons under my belt and I worked as a personal trainer for years. Last year, the most debilitating fatigue I have ever experienced hit me. Getting though a 3 hour rehearsal or a 90 min dance class would lay me flat on my back for a good day following. I would also start visibly shaking and get very weak and dizzy after a dance class (literally crawling to the wall one time in a modern dance class. Humiliating) I realized that I had to adapt every workout for how I felt that day, week, month. This has been one of the hardest things for me to cope with. When I hear runners run by my kitchen window, the desire to get out there and feel the brisk morning air chasing me is almost too much. But I cant. At least not every day.

I've learned that if I set aside 30 min a day to exercise- I feel 20x better than when I make excuses not to. Some days I only have it in me to stretch and do very gentle yoga. Other times I have been able to run, cycle and even dance. All it takes is the MENTAL strength to say 'now I am exercising' and start. Of course, there are times when I have overdone it and spent the next day on the couch. But exercising actually helps me to understand my limits and know how to operate in a way that I move and stay as active as possible without making myself sick. And *yeay!* for endorphins! Nothing beats the great flood of 'happy' that comes after a nice workout.

Exercising is one of the ways I have found to empower myself. It reminds me that I have strength even if it's just the mental strength to TRY exercising. It reminds me that my body is this physical, powerful thing and that I am connected to it in a positive way.

Anyhow, I suppose I am on this subject because I feel so great right now- and the only thing that has changed is that I have gotten back on track with my diet and exercising. I am still dealing with the same symptoms I've had for a month (burning legs, numb face, bouts of trigeminal neuralgia) but I am feeling so empowered right now. I feel like I am FIGHTING M.S again, and not just sitting back and suffering. It's a great feeling.

Support

2011-05-22T20:37:00.000-07:00

Today I had a really uplifting and wonderful day. I didn't do much besides running some errands and helping run a lovely friends dance-company audition but I felt strong and happy for most of the day. To top it off, I had the energy to come home and cook spaghetti with meatballs and sautéed mushrooms for my fiance and myself as well as some cookies to follow. I really enjoy cooking, so having the mobility, energy and motivation to do it is great!
I think one thing that has really lifted my spirits is that I recently started feeling much more comfortable with the fact that I have this disease. I don't feel the need to hide indoors when I am doing the 'drunk walk', I just grab my cane and go. I don't need to keep telling friends 'I can't' because of this or that- I can tell them what is really going on. If people can't accept me than I need to move on from those people. This doesn't need to define me, in my eyes or the eyes of others. I don't know why I have hidden this, felt embarrassed, and withdrawn. It's time to move on from that stage of whatever this process is.
I have realized that there are some truly amazing people in my life who are here for me. One is the dance-friend I mentioned above who has allowed me multiple times to pour my heart out and has made me feel greatly strengthened by her friendship. Another is my fiance, who has fought and fought with me and always been by my side making me laugh and keeping me going. I feel so lucky to have such great people in my life and they have both greatly lessened the load of my M.S, this past week especially. It's amazing how good friends can help you feel so much better.

Fun with Receptionists

2011-05-19T10:57:00.000-07:00

This entire week has been a difficult one. I'm not sure if I am experiencing an exacerbation or if I am dealing with something else altogether. The tricky thing with this disease seems to be that you never know if your symptom is caused by the MS or not. For years I have had on and off pain and stiffness in my hands, feet, knees, and right hip. It feels like hot sand is in my joints. I'm starting to wonder if I don't have Rheumatoid Arthritis. Even typing this hurts. This symptom was always tolerable until this past week.
I am also having hideous electrical pain that shoots down my legs and wont stop making me feel like I am on fire- but that has eased up a bit and I slept last night for the first time in a few days. So I'm sitting here with a cup of coffee and a blanket enjoying a late morning and feeling quite good despite my gritty joints, I should not complain except that....

I tried to make an appointment in the same week with my doctor at Kaiser to check on the issue (pain, icky joints). Anyone who has Kaiser may know how difficult this can be. I call Kaiser and they tell me to go to the wrong doctor in the wrong city becase an appointment is available within the day. Realizing they think I am dying, I cancel and decide I need to request MY physician in the city I prefer. *Side note: I live near two cities: One with BAD Kaiser, one with a 'meh' Kaiser* They make the wrong booking anyway and I have to cancel by phone. I call back and repeat the process. FUN!
The next day: Kaiser calls me back trying to find a time that works withing the next three hours. No bueno. So they call back again- different receptionist, once again trying to schedule on the same day, three hours. I tell them that I cannot do that, but any other day and time in the future, forever and ever, amen, may be an option. So they tell me to call back and try again another day. Lovely.

I screamed into my pillow then ate a bagel.

Well Hello There

2011-05-15T21:44:00.000-07:00

Where to begin? I suppose I should start with who I am and what this is all about. I'm 25 and I have been a dancer, artist and runner my entire life. Music is one of my greatest passions. I have been dealing with Multiple Sclerosis for about five years but my suspicions weren't confirmed until a bout of optic neuritis in 2008 significantly effected my vision, first in my left eye, then in my right. Now, in 2011 I am still partially blind and I have experienced further exacerbations. I often feel terribly, dreadfully alone. But I know that I am not, and that is why I am writing here.

Talking with the people in my life about M.S has not been easy. The few people I have told have for the most part, reacted with pity, confusion or by distancing themselves from me as if M.S is contagious - leaving me feeling quite isolated. Most people are vastly misinformed as to what M.S is and as a result I am quite passionate about raising awareness. There have been a few shining stars of support whom I appreciate dearly and who have greatly helped me. If there is one thing I have learned with M.S, it is that support is crucial.

I am using this space as a place to share my thoughts, experiences, vent, and just talk in general about life with M.S.