The Real Dominican Republic Part 2

A couple things come to mind as I reflect on my brief trip to Puerto Plata. Before the daily hardships of the Dominican’s I met, whatever my worries or troubles are, they seem to melt to complete insignificance beside what I witnessed. Since this blog is titled “Living! With MS,” let me begin there. I am lucky to have some very decent health insurance through my employer, even though I only work at that job half time. I have a team of great doctors and the medication (Copaxone) that I take to slow the progression of my disease, at my fingertips. A visit to my neurologist costs $20.00. Monthly, I also only spend $20.00 for my medication. If I am hit with a large bill, I can make payments. I am not even sure who has health insurance in Puerta Plata. I also know for a fact that in order to receive treatment in the Dominican Republic, you must have complete payment in hand at the time of treatment. So yeah, while many folks might say I am unlucky to have MS, I say I am very fortunate to have affordable access to the care I need, whenever I need that care. When I was in Puerta Plata, I also met my boyfriend’s best friend. When we were introduced, my boyfriend mentioned that his friend had helped him to survive several years ago during a dark time. Not only did his friend help him secure employment, he also found him a ride across the country to get to the new job. The thing that actually stuck out to me the most is when my boyfriend mentioned that his friend and his friend’s parents took him in and fed him when he had nothing to eat. Nothing to eat! Imagine that. I honestly can’t. I realized that in my entire life, even when I was very poor, I have never had to miss a meal or go hungry. I have never been without water or electricity and these things that I have taken as a matter of course, are not a matter of course at all for so many people in the Dominican Republic. I suppose that here is where we could start the pity party but honestly, I suspect that the people I met in Puerta Plata would not even understand why I thought there was cause for a pity party at all. When I visited, I was fed and given a place to sleep although it was apparent there was really nothing to spare. They also threw me a giant birthday party and all I had to do was buy groceries. An enormous amount of food was cooked from scratch, and my boyfriend, an amazing man with nothing to spare, bought me a cake. Most amazingly of all, at the end of the night, they offered to pray for me. Pray for me? I already have everything I need but this was not the sort of kindness one says no to, so I asked them to pray for my health, and then they did. I closed my eyes and allowed their love and kindness to wash over me and honestly, there were tears in my eyes. I am blessed.

The Real Dominican Republic part 1

The last time I was here it was to visit a much different Dominican Republic than the one I just visited over the last several days. The Dominican Republic I visited in June was the one you buy out of a travel brochure, pina coladas, excellent service, pristine beaches, pools and facilities with all the comforts of home (electricity, internet, running water, laundry etc…). I spent a week in June, a queen in paradise… I knew I was not really seeing or experiencing the life of regular Dominican citizens, but I also was uncertain what life for many people here is actually like. A couple days ago, I got back to tourist-land after visiting my boyfriend’s family in Puerto Plata and I wanted to write a little about my experiences while they are still fresh in my mind. I think the culture shock began to set in at about the point where his grandma explained the toilet and sink to me in Spanish. Usually I understand a good deal of the Spanish spoken to me, but in this case, my brain refused to really understand until I wanted to flush the toilet. Puzzled, I tried about three times. Next I went to the sink to wash my hands. I turned the knob but nothing happened. Stubbornly, I tried again. Finally, my thick brain began to comprehend what she had told me. The bathroom water was not running. “No problem, I’ll use the kitchen sink to wash my hands.” Oops, no water there either. So I asked my boyfriend if the water was just off temporarily, maybe they couldn’t pay the bill this month. Delusional American princess, running water is expensive. Ok, ok, but the apartment is so clean and carefully kept. How do they do that? Ok, it’s kind of like camping all the time. Once I had that settled in my mind, I moved on. For a while I sang and played with his five year old sister but she was very precocious and I felt that perhaps I could further entertain her by reading a story. I asked her if she wanted me to read to her and she enthusiastically agreed. I asked her to show me the books so she led me to her room. I tried to turn on the light but it seems that light bulbs are also a luxury so I fumbled around in the dark, grabbing one book after another, only to discover that all she actually had in her room were ledgers and notebooks. There were no children’s books to be had at all, and it turns out that mom lives in another country and grandma cannot read anyway. Dad runs a store below the apartment and later it donned on me that he does so by candle light. Electricity is exorbitant. What they have is coming from a friend, not paid for at all. Who can buy electricity when several months of family income can’t even pay a month of bill? I admit, as one piece after another fell into place, I was shaken. It seems that no one in the neighborhood has running water. Everyone seems to use buckets to flush the toilet and a giant bucket to essentially sponge-bathe. I never did work my way up to either a sponge bath or a #2. I just treated the whole thing like camping. While everything I have recounted is important, it hardly comes to the crux of what seems important here. To be continued...

Bavaro 12-10-12

I was going to write a long update today but vacation just began for my honey so I will post a longer update another today. In the meantime, here is a photo of the first picture I have painted on my vacation.

Day 2 in the Dominican Republic

Hello readers and friends. Right now I am kicking back at a restaurant/cafe right next to my apartment in the Dominican Republic. I will be here until early 2013 visiting my honey and looking/dreaming of a job in the DR. Right now I should be job hunting and updating my resume, but just sitting here is so much nicer:) So far I am just settling in and relaxing. Yesterday I think I bought out the entire grocery store stocking up on food and supplies so I can mostly just chill. In the next couple of days, I plan to get my butt in gear to find a place to work out and teach a bit of yoga while I am here. In the meantime, my apartment is right next to the beach so I can always go for a run and workout on the sand for cross training. I also brought my new aerial fabric, and I am looking for a place to rig. The balcony looks promising, but I need to do some further safety investigations before I start climbing. I do not have internet at my apartment but I will try to post regular updates on this page as my adventure unfolds.

Gene Test for Super-Responders to Copaxone a guest post by Heather Green

Gene Test for Super-Responders to Copaxone Earlier this year, American Academy of Neurology researchers announced plans to perform genetic tests among multiple sclerosis sufferers to determine—with 90 percent accuracy—patient response to glatiramer acetate, or Copaxone. This test would help clinicians more easily and quickly decide the drug of choice for each patient. Geneticist Fabio Macciardi of the University of California, Irving, and his team examined DNA samples from 599 patients from a Phase III trial funded by Teva, the pharmaceutical company responsible for Copaxone. Gene test for super-responders For the study, a DNA chip capable of assessing which nucleotide resides where in the genome was used to detect 31 single-nucleotide polymorphisms (SNPs). It is these SNPs that showed measurable relation to Copaxone response in extreme-responders. One SNP can tentatively predict if the drug would reduce relapse frequency, but a combination of six SNPs gave Macciardi’s team the weight they were looking for to further future research. Just one of the 31 SNPs associated with Copaxone-response is among the 60-plus genes supposedly determining the risk of developing MS, but Macciardi assures us that the research remains in its infancy. We’ll have to wait for confirming studies. Big Pharma’s financial ties In the meantime, it’s worth considering that Teva itself funded the research, which, given that its product was the one in question, is logical. Still, it’s not unlike having the wolf guard the hen house. Many pharmaceutical companies have no qualms about bribing doctors—like the celebrity Dr. Drew—to push and promote off-label use of drugs. Investigations also revealed financial ties to pharmaceutical companies among 70 percent of the Diagnostic and Statistical Manual of Mental Disorders (DSM) panelists, who have listed in the newest DSM edition situations like the loss of a loved one and frequent temper tantrums in children as being cause for psychiatric disorders. Natural alternatives Although pharmaceuticals can relieve painful symptoms and be used responsibly to treat serious conditions, our overreliance on them is becoming ever clearer. Dr. Andrew Weil advocates experimenting with natural solutions, if not without pharmaceutical aid then in conjunction with it and your physician’s notice. Try: • Decreasing or eliminating dairy products and finding other calcium sources • Decreasing or eliminating polyunsaturated vegetable oils, margarine, vegetable shortening, partially hydrogenated oils, and all foods (like deep-fried foods) with trans-fats. Use olive oil and coconut oil (a great butter substitute) instead. • Increase omega 3 fatty acid intake from either low-mercury fish or walnuts, flax seeds, and hemp seeds. • Drink ginger and turmeric tea—both are great for digestion and inflammation and have far-reaching health benefits that may extend to MS symptom relief and healing. • Take a daily probiotic to ensure digestive health, which affects neurological health, too. • Eat lots of organically grown fruits and vegetables to avoid pesticide residue, which has been attributed to neurological and autoimmune diseases. A UK and Canadian research team also recently found that vitamin D can help control a gene that increases MS risk. This is not the first study on the matter and will likely not be the last, but it wouldn’t hurt to spend some extra time in the sun—without sunscreen. To get your daily dose of vitamin D—but prevent sunburn and skin cancer—spend about 30 minutes in the noonday sun daily. Time and skin exposure will differ according to pigmentation, season, and geographical location. Heather Green is a mom, freelance writer, pet lover and the resident blogger for OnlineNursingDegrees.org, a free informational website offering tips and advice about online rn programs.

Life without antidepressants

I am not going to lie. I will not even sugar-coat the truth for mysel,f or anyone else bothering to read this. I remember now that life without antidepressants is hard. At the time of my diagnosis, I fought hard to avoid all meds. It took a year before I went on Copaxone, and another year before I finally committed to taking Effexor for depression and anxiety. I think the thing that finally brought me to the Effexor was my anxiety. I found myself absolutely incapable of being present. All I could focus on anymore is the stuff I thought I needed to do. I also felt guilty about not being able to shake off the bad feelings enough to even do the stuff I was worrying about. Being on antidepressants was like taking a two year vacation from worrying about anything for more than about five minutes. I learned to let go of my anxieties and to just enjoy and trust in the present. I found tools for coping with challenges, but with the help of Effexor, it was easy to use the tools. All the stuff that had previously gotten me down, just quit bothering me. I learned to worry less about what others thought, and to ignore my imaginary grand score-card in the sky. I stopped really being concerned about my ability to take care of stuff. I just trusted that I would take care of things effectively when I must. I did not waste any energy worrying about how and when I would take care of stuff. I even learned to feel better about just relaxing and hanging out. I was less driven by the nagging feeling that I must be forgetting something. Now, drug-free, I am looking at my world, my future and my mounting to do list, and I am not quite so confident. I am doubting myself more. I indulge in moments of "crazy" where I feel guilty about not running one more errand, or doing one more chore before I "reward" myself with a break. What the hell happened to all my positive momentum toward self-acceptance, happiness and actualization? I am glad I can still remember a bit of what life felt like on Effexor. It often helps me talk myself down from the crazy, but I admit to losing some sleep. I wake up in a sudden panic with ugly things in my mind, like competition or comparison of myself with others. And yet I know, down that path lies only bitterness and discontent. Lately I discover that I am again giving myself points or demerits on that imaginary score card and I hate it. Then I turn around and hate myself a bit. That too is a vicious cycle. Remembering life on the Effexor cloud is harder. Does this mean I will go back to the Effexor? Not just yet. I wanted to remember what it felt like to live life with out anything to block the "realness" of it. Now it's real, and sometimes it is hard, but I am not ready to give up on my current course yet. I really do believe I can do this!

Another day in the life

Not all that much to report here. I imagine the picture on this post will be by far the most interesting part. Still busy but I do have a few vacations looming. from last Thursday to the end of this one, I have a lot happening. This past Thursday, I performed at a gallery for Dia de los Muertos. This was my first "paying gig." Problem is, I have yet to get paid... By Saturday, I was completly exhausted. I slept 12 hours, got up, did dishes and then went back to bed for 3 more hours until it was time to go to tech rehearsal for my Saturday night show. At rehearsal, I was the only one still sipping coffee at 2:30pm, and the only one who skipped actually practicing for the show. It took 20 ounces of coffee and two Aleve before I could even bring myself to take a good stretch. Luckily, adrenaline, friends and my aerial idol (my sister Alex) got me through Saturday night's performance. I even went to the cast party, after which it was back to bed for another sleep marathon. I wanted to take yesterday off completly but I needed to rehearse for this week's show (Denver RAW Awards, I am up for performing artist of the year for Denver). I also had to run some errands, but then it was back home to sleep some more. I dragged myself out of bed for dinner and then I went back to bed for another 11 hours. Today I was still tired even after all that sleep and we have parent/teacher conferences until 5:30, so I am still at work, sipping my 4th caffeinated drink of the day (don't lecture me, it's that or Provigil, and it is not a daily thing, lol). The week is just beginning and it is not about to slow down. When I leave here I still have to go teach aerial dance. Then, extra early on Tuesday, more conferences, teaching school and then teaching yoga. Wednesday, repeat, stay late at work and then go rig for Thursday's show. Thursday, another extra early start, teach school and then go to the venue for a long night of face painting and performing. Friday, extra-early start after show, regular teaching day and then, a really, really epic nap that may not end until sometime on Saturday. I am excited to spend Saturday creating a permanent indent on my couch. Here's the good news. I love all the stuff I do these days so even the busy is not so bad other than the fatigue. Thanksgiving week I am going out of town for almost an entire week of yoga and nature retreat. December 4th, I leave for the Dominican Republic for an entire month. So even in the midst of the insanity, I have some great time off to look forward to.

10/27/12

I have been working hard; really hard, and now I have a day off and I am so physically and mentally fatigued that I can't really even remember what it was that I was going to do for myself today. Yesterday I knew I was going to write a blog entry. Trouble is, I don't really even remember what I planned to write about but I woke up thinking, "Today I will write a blog entry, maybe two." Those of us who have MS know that sometimes our brains get foggy and sometimes we are just so tired that all it seems we can do is stare at a wall. I think I am close to that state and so what is coming out feels very random and disconnected. Still, I am compelled to write, so if you are still reading, bear with me. Yesterday I read a blog entry by a lady recently diagnosed with Guillain Barre. Her writing caught my attention because she mentioned how her illness forced her to drop out of yoga teacher training. I was hit with the immediate impulse to respond, the impulse to tell her not to give up hope, the impulse to tell her my story, to encourage her to pursue her dreams. I wanted to reassure her, just as I reassure myself that an autoimmune disorder does not define our entire life. I needed to remind us both that it is still possible to dream and to pursue our dreams. I really had to think about what I wanted to say because there is a fine line between, "Look at me and what I can do" and offering another person a success story. More randomness, but there is a tie in... I still have a hard time even believing that my current life is real. How did I get to where I am today so suddenly? A year and 3 months ago I got serious about aerial dance. Last October I performed for the first time. This November, I will perform 3 times in one week. I still keep expecting to wake up and discover that this is not real. This feeling serves as a constant reminder to love the moment. For me, happiness has been about coming back to who I really am, the person I somehow always was underneath it all. It is strange how we are born perfect, exactly as we are and then we often spend our entire life trying to reshape ourselves into what we think we are supposed to be. I think I have finally gotten back to me, but I am afraid that ego will get in my way and ruin my enjoyment of the experiences and opportunities before me. It is a fine line between enjoying being a performer because it is my nature and creating my performer persona. It is my nature to invent and perform but I need it to be for me. If this disease has taught me anything, it has taught me that any action that I take contrary to my true nature is highly detrimental to my health and happiness. So I create characters and book shows, and I try to remember why I am doing the things I am doing. I notice the minute I think too much of my work as obligation or business, it robs me of joy and causes stress. The stress in turn causes health issues and obliterates the point of even performing and owning a moving arts business. It is a fine line. I want to "make it" as an artist and teacher, "live the dream" but not lose sight of the stuff that actually matters. That is a tall order.

Update 10/20/12

Finally a day off and a chance to update everyone on the latest. First and most importantly, my health is good overall and even better, my body is doing the things I ask it to without much protest. Second, I feel truly blessed. Lately, it seems like all my hard work has really been paying off. Last week I was written up in a local arts blog. Then, the next day I was booked for my first paying gig coming up November 1st. Things got even more amazing the following day when I won a nomination to compete in the RAW Denver Awards show in November for the Performing Arts category. I also had the chance to teach an awesome partner yoga workshop last week with a friend and I have booked another aerial yoga workshop at another studio for November. So overall business is booming and more importantly, I am getting a chance to do all the things I love. On Thursday night I got to perform at a club for my first time with the RAW Denver Artists. Here is a link to my most recent aerial performance.

Nominate Me

Nominate me for the RAW Denver Artists Award Show: Use the link in this message to nominate me and to buy tickets to my upcoming show. You will need to register the first time you go to vote to get a login but after that, you will just be able to login and vote once daily. Please take the time to do this because this presents an enormous opportunity for me as a performer. You don't have to be a local to vote.

Where my syringes go to die

I decided to photograph my containers of used copaxone syringes before bidding them farewell to the trash.

Stress is Bad for MS

Stress is not just bad for MS, it is just bad for health in journal. Let me clarify a bit. I don't think that all stress is bad. Sometimes there is also good stress; the kind that comes with trying to juggle the things you love. Stress can also be a great motivator. Stress sure motivated me this morning when I saw my pay stub. I was motivated to reduce several payments, cancel some stuff, and ask my roommate to help out a bit more on the bills. Nevertheless, I can hardly call all that motivation good stress. Note to self, do not wake up and check your bank balance while still in bed. It immediately eliminates the restoration from a good night of sleep, and it also immediately elevates ones stress. I felt good when I woke up, but I single-handedly changed that by creating my own stress worrying about money. I'm on vacation from teaching school for two weeks and I promised myself to use this time to rest, recuperate and take care of the little stuff I never seem to have time and energy for. In the meantime, I have managed to clutter my head with financial worries. Bills, shmills. If I don't pay them, maybe the cats will (Lol). Seriously, who knew that health insurance was going to gobble up over an eight of my paycheck. Here I am, one of those spoiled rotten teachers always complaining about my enormous salary and free, excellent benefits. Not so much... After taxes, retirement and insurance, my check was only about $1,200.00. And some folks think teachers are over-paid... Sure, I cut back to half time, but I never expected this hard a hit. I became a part-time teacher so I could enjoy the happiness associated with being a bohemian. Health and happiness are so much more important than money, but now that I have none, I realize that money is rather helpful at times. Anyway, the day is only half over and I have lowered my bills by about $300.00 a month (not bad for a morning of phone calls). I bought a ton of groceries to top off my morning of running around with my head cut off, and now I am safely home and much relieved to have finished the "stressful" part of my day. My heart rate is back to normal, headache and nausea are gone, and all I had to do was reduce my stress. Amazing how that works.

Best of Healthline Blogger Award

Today I was surprised and delighted to receive an email from healthline proclaiming my blog was selected one of the top 20 for 2012. Below I have pasted their writeup about this blog. "Nadja Yse Stringer is one inspirational, sassy lady! This perky, positive blogger shows readers what it really means to be Living! With MS. Her passion for fashion, yoga, and life in general leads readers on a playful but honest journey toward self-discovery, spirited living, and wellbeing with MS. Find out how Nadja creates a fantastic world both in her personal life and on her blog by following her clever posts and artsy updates. Enjoy the experience as she breathes life into your own efforts at building happiness and health despite MS." BTW, I am Tizer, not Stringer but I know who I am:) I was also pleased to see that my friends Lisa Emrich and Joan also have blogs on the list. I am also pleased to know the author of another amazing blog on the list.

Looking Back in Order to Look Forward

Many things about this summer were/are great, but there have also been challenges. Sometimes it is hard not to get mired in the challenges, so I thought I should take a moment to look back and to remember both the good and the bad. This summer I spent a lot of time feeling ill but that is my summer norm. Things are rough when it is hot and things are also tough when I am as busy as I have been. Despite, the physical challenges, I find that today I am probably in the most top physical shape I have been in since before MS. In fact, in some ways I am even healthier and stronger now. This summer I also made some big life changes. I went to the Dominican Republic, fell in love with the country, and met a wonderful man. Before I came home I had already resolved to quit my job and to start making steps toward moving to the DR. When I got home I quit my job, took a new half time teaching job to keep my benefits and launched my own business full speed. To top off all the change, I quit my anti-depressant. Not everything has been perfect or easy. I have had to keep going, showing up to teach and perform all over the city, even while sick. I dragged myself to my day job many a time when I was not feeling well. Quitting the anti-depressant was physically much harder then anticipated. For about a month my body ached, and I experienced a lot of nausea. Now the clouds are lifting but now I remember what it is like to feel, really feel life. All this feeling is harder than I remembered it was. I have had some trouble with a few of my jobs lately. First, via email my yoga boss told me she was giving one of my regular classes away to another teacher. Then, also via email, my aerial boss gave one of my aerial shifts to another teacher. On the bright side, neither change was made because they had problems with my teaching. The changes were made to benefit others but I am stressed about the income lost and a bit insulted because I have bent over backwards to promote both studios and to fill in when they were desperate for coverage. Apparently some folks have little compassion or loyalty. On the flip side of all this, I have to remember just how far I have come in a few short months. After less than three months, I have regular shifts using my business name, an after school cirque yoga gig, and two upcoming workshops scheduled. I also have had the chance to perform 3 times this summer and I have two shows booked for the fall. My new business page already has 35 likes and they keep coming in. I even notice that people are using the info on my business cards to stay in touch. I realize that for an aerialist with a year of experience, things are really taking off. Sometimes I have to take a moment to look back in order to look forward.

Acro Yoga

I never understood all the fuss about partner yoga until I tried Acro Yoga. This practice fuses everything I love about acrobatics with everything I love about yoga. In acro yoga there is the joy of flight, akin to my experiences with aerial yoga and dance, but entirely unique in apparatus (your apparatus being another human being). So while you fly in this practice, you never fly alone. Acro Yoga is a beautiful practice requiring, focus, strength, empathy and trust between partners. Even then, the practice is much more expansive than two people. I think a meaningful practice requires a willingness to develop a rapport with multiple partners and spotters. Often only two people execute a sequence of poses while physically connected, but even in practice, this again requires more than two people. We practice with spotters. We also practice things that require multiple people. For me, this practice exemplifies what yoga is all about. The word yoga means union, and there is no acro yoga without union. Want to try it? click here to find a teacher in your area.

Still hanging in there

This has been a great summer in terms of making my dreams manifest but I cannot say it has been a good summer health-wise. I realized yesterday that it has been over a month since I have actually felt well for more than an hour or two but business is booming and so I keep working. I find myself violating all of my carefully set rules for living with MS but I keep promising to myself that I will take time in September to relax. Saturday was my first day off in two months but i got food poisoning and puked all day. WTF? Anyway, I have not had health insurance all month but think I will again by September 1. Yay! I am going to see all my doctors then. In the meantime I am going to acupuncture and getting massages. This seems to help a lot but what I really need is a break. Soon, soon... Ok, per usual, running to work now. This photo is from my recent performance at a fetish ball LOL.

No time to whine

I want a minute to whine before my work day begins, but I really don't have the time... Here it is: I have bathed, washed my very long hair, got dressed, combed my hair, tried to style it and then gave up. I am already exhausted, so I am going to catch my breath for about a minute before I run along. MS does not exempt you from taking care of stuff, it just leaves less energy for the fun. I guess it is a good thing I like all my jobs. Bring on the fun: day job, interview, teach yoga, teach aerial, eat and pass the F-out.

It is Primarily a matter of Attitude

After spending over a week feeling awful, I am reminded that one can either break under suffering, or one can embrace it as a reminder of just how good it feels when things are good. When I don't feel well, I just have to remind myself that it is possible for me to be well again. In these times I must just practice patience, faith and compassion for myself. Sometimes giving myself compassion is the hardest part. I often beat myself up for not still doing the million things I have committed to. I am proud of myself for how I handled my most recent setback. I actually gave myself a bit of a break. Yeah, I still went to work every day but I did skip all additional social engagements. I also took a nap every day. It is rather lame that I put all my fun on hold so I could keep working but as they say, "No rest for the wicked." Anyway, today I finally feel pretty decent. I got a long massage on Saturday and that helped a lot with the toxicity in my body. When I got home, I immediately vomited and frankly, I was relieved because I knew it was some of the yucky leaving my body. Yesterday I felt awful. I was so hot and nauseous that I was having a mini-meltdown but I kept reminding myself that things would soon be better. I slept a ton, and now I finally see a light at the end of my long, nauseous, migraine tunnel. Today I am going to get another massage. I hope to be all better soon. While one can't avoid suffering, what one makes of it is primarily a matter of attitude.

The good, the bad and the ugly

The Good: I am signed up for a week of classes at the circus festival, the class is great and day 3 starts in an hour. The Bad: I feel too awful to go and I missed yesterday too. The Ugly: My health insurance from my old job ended yesterday, and my old employer never even got me the stuff for COBRA so I am temporarily uninsured. I find the timing of all this suspect. Was this just a giant episode of self-sabotage? The Good: Things were going great, not just great, perfect. I felt great, I was getting really strong, all my dreams were coming true. I just seemed to be ending up in all the right places at the right times. The Bad: I forgot to take one of my twice-daily antidepressants. Then, I kept forgetting one a day on purpose. I did this for a while, and still felt fine because I was ingesting enough of the medication to keep my body from experiencing withdrawal, but not enough to be quitting cold turkey. That was until the Friday/Saturday fiasco. The Ugly: Friday night I went out for my friend's birthday. We had some drinks. Then we had some more. I wasn't wasted but I wasn't sober. I avoided puking, but maybe I didn't have enough hydrating liquids. I stayed up until 4am. I woke up after a few hours. I was only a little hung over but then I had to go to rehearsal. Spinning and upside down are not your friends after drinking. Skipping your antidepressant entirely, after a unsupervised medication taper, is also not a friendly experience. Apparently, getting off antidepressants is a bit painful. Me duele mucho. The Good: I am tough and used to taking care of business, even when I feel cruddy. The Bad: I can survive taking care of the things I must take care of, but now I am missing the stuff I actually wanted to do. The Ugly: MS makes you unsure what symptoms are worthy of concern. Right now I feel flared but I really think it is just med withdrawal. The wild card here is of course the MS. Am I MS sick or meds sick? The ugliest part: I can't even call my neurologist to ask.

Day off

I find myself with a day off. I intended to do so much but it was over 90 degrees at 11:00 am. Still, I tried to push myself just a little and ran face first into that brick wall which is sometimes MS. I did not curse it, nor did I push on, I came home and napped. Now I am eating popsicle and wishing that swamp coolers worked a bit better in this heat. I had big goals for a blog post, but sometimes the best laid plans should be set aside in favor of health and sanity. I am currently reading Potty Mouth by Renae Clare in preparation to write a review. I won't be a spoiler but I already recommend the book. Renae gets "it" not just as a woman with MS, but as a human being. I leave you with a quote. "There is no drug that is as powerful as the inner spirit, the real self, the self that comes from cutting off the ego whenever it rears its ugly head..."

Dream come true

The last month has been the best month of my life. Things are coming together and many of my biggest dreams are coming true. I intend to write much more but here is a quick synopsis. I got a new job in a better school district. It is half time and I still can get healthcare. I also finally am getting my own business "Firebird Moving Arts LLC" going. I had a fabulous vacation and fell in love with both the Dominican Republic and a beautiful man. Things keep unfolding in ways that make them feel like destiny. I have this deep sense that I am exactly where I am meant to be, doing exactly what I am meant to at this moment. It feels amazing. More to follow soon...

Gone Fishing

Well, actually, I don't fish, but I have managed to slip away from home and my busy schedule for a week of vacation. I am currently in Punta Cana (Dominican Republic), enjoying a fabulous week at an all-inclusive resort. While this was a large financial commitment, it is so worth it. My friend and I just got here yesterday, but we managed to pack in the action last night after our arrival by seeing a little show, singing karaoke, dancing, and best of all, playing on the beach and in the rain at 2:00 am. Today included a rigorous course of Pina Colada drinking, laying around the pool and a short yoga class. Tonight we danced a little more, saw another show, and now we just ordered room service. It's a rough life...

How I fight MS

I scoff at you MS. I work out 3 hours and then I sleep for 14.

Summer Preview

Tomorrow signals the last official work day of the 2011-2012 school year for me. Students finished on Friday, and my work is done, so I just need to go in to check out-- then begins my official summer. I am dedicating this year to me, "The Summer of Nadja." This summer I will figure out what I want to do when I grow up:) Seriously, I am dreaming of leaving my current, large, career responsibility behind and striking out on a new path. As you might imagine, my biggest concern is how to find and keep some decent health insurance if I change careers or just embrace life as a bohemian (any reader insights or suggestions on this one would be most appreciate). Anyway, enough about that boring grown up stuff, this blog entry is dedicated to previewing my exciting summer plans. Also, check out the link from my latest aerial performance. The excitement begins in June with my performance in a "Social Circus" fundraiser. This is followed by a trip to Punta Cana, Dominican Republic for a week of kid-free, resort play on the beach. Then I return to a gig teaching circus camp and playing in aerial land. In July, I am going acro yoga nuts. I have a hand standing workshop, acro classes and an acro for aerialists workshop to attend. All the acro excitement culminates in late August with an acro yoga "solar immersion" for acro "ninjas." I can't wait!

Free time

I am currently experiencing one of those unheard of states of being called free time. It is so rare that I do not have anywhere I need to run off to. I had a job interview this afternoon, and then I grocery shopped but I was home by 4:30. This literally almost never happens. I feel almost guilty sitting here in my pjs with nothing I have to do.

When I got home I had to ignore the voice in my head that was whispering that I should go work out or at least do some sit ups. I am still reassuring myself that it is ok that my butt is creating a large crease in the sofa instead of building strength for my next aerial show. The show is still three weeks away, but I know that I need to spend a lot of time building the strength to do two new routines.

This entire week feels almost like another spring break. I found coverage for all my mid-week yoga teaching, and I am taking Friday off to play with friends. I also have Sunday off for the first time in a few weeks. It's a good thing because my day off Friday is the first day with no work that I have had since the beginning of April. I am using my freedom to read novels, make some new trash art, and to finally blog again. Yeah me!

In Memory of Dorothy Baron Kaplan

She was my maternal grandmother, but she was so much more. For over four score and eight years, she brightened the lives of everyone fortunate enough to know her. Yesterday, my sister's father commented, "They don't make 'em like that any more. They broke the mold when they made Dorothy." He was absolutely right.

Dorothy lived a full and amazing life, the kind I might dream of living. She was always a force, a viable presence wherever she was. I could go on about her accomplishments, her physical legacy, but I think I would be missing much of what is of the essence here.

Dorothy was a force because of the way she affected the people who where fortunate to love her, know her and to be loved by her. No one could every deny her ferocity, her bark, and her insistence on control, but in essence, she was the embodiment of love.

When I went to sit by her bedside yesterday to say goodbye, there was evidence everywhere of just how much Dorothy is, and was loved. All of her close, local family took turns huddled in her room to speak to her as she drifted away. We stroked her hands and forehead, they were so soft. Even in her advanced eighties, grandma had beautiful skin-- so smooth and nearly unwrinkled. Even while struggling to breathe, lying in bed, she was beautiful. She was always beautiful to me.

Family and friends called and we held the phone to her ear, even as she slept. We could tell she heard their words because her face and body reacted in the embrace of their loving words. She smiled when my little (ok, younger) brother called. As I looked around at the faces of Dortothy's loved ones, I could only think, "should we all be this lucky to find and know so much love in our lives. Dorothy was love.

Slightly bitter

As I stare at the pile of ten, huge prednisone stacked up in front of me, a favorite phrase of one of my students comes to mind, "Fuck my life." Pardon my French, I'm just quoting and thinking, "little girl, you have no idea."

The truth is, none of us really have any idea. I'm feeling sorry for myself because I have been flared for almost two weeks, and the only apparent solution at this point is a massive dose of steroids, but my more rational mind knows that it could be much worse. Still, I am having myself a pity party and my readers (at least those who can relate) are invited.

Ever taken 500 miligrams of prednisone a day? Then you know. I don't even think that a Solumedrol user can fully relate. This is one of the most disgusting ways of medicating ever invented. I find that Copaxone injections have nothing on the Prednisone. The pills are huge, they taste terrible, they hurt your stomach, rob you of sleep and make you insane.

When I do take steroids, I always must weigh the lesser of the evils, my symptoms or the disgusting chore that is steroids. I always wait as long as possible before giving in. If I didn't need to work or pay bills, I would continue to try sleeping this off, but I have already been in bed for 3 days, and I think it is time to take steps so I can go back to work (it's overrated but so is eviction).

End of pity party, bottoms up, here goes the first of ten.

Sick and tired of feeling sick and tired

I guess the title says it all. Really I can't come complain (comes with the territory) but this year I have been spoiled. Up until January, my health was almost spotless for a very long time. Now, like every one else, I have actually been getting sick again.

I got sick and had to call in at the last minute in January. In February, I got a bad cough and cold that lasted over two weeks, and last week I was rather flared. Basically, everything just seemed to be painful and inflamed. I slept most of it off, but I still keep getting twinges. For me, these seems to manifest in extreme, nauseating exhaustion. Needless to say, I am ready for the last of this to pass. I am blaming the fickle weather (gotta blame someone).

Taking Action

Sometimes it seems easier to be swallowed by inertia. We feel discontent, but we find it simpler to complain, wallowing in our circumstances, than it is to act. Taking action requires more strength than allowing oneself to just tolerate the suffering.

So here I find myself again, shifting the chains I allow to bind me, mind and body. The weight of habit is enormous. Shifting that weight requires dedication and persistence.

Many times before I have tried to shift this weight, but my efforts often seem fruitless. Sometimes it seems that changes I seek come not from my efforts, but from some shifting in my universe. I try and try to make the changes, but nothing happens, but then, somehow miraculously, things do change, not in tiny shifts, but in grand proportion.

I used to take a yoga class that I really loved. The teacher always reminded us at the end of class, "Trust that everything will unfold exactly as it is meant to." There is no assurance in this affirmation that "everything will turn out right, or everything will turn out how you want or expect it," but there is a surety that things happen with some order. I suppose this assumes there is a divine power greater than ourselves, but I guess we each also assume what is most convenient for us to assume, so I live with the faith that things will work out for me. It's not that I expect they will be perfect, or even that they will be what I expected. What I do expect is that I will always learn something during the journey. So I cast a new pebble into the pond of my life and wait to see which direction each ripple takes.

Reflecting

For the first time in several months, I find myself alone in the afternoon with nowhere I have to be. The only times this has been true in the last few months, was on the sick day I took last week after coming down with a bad cold. Since when did illness have to become my only personal justification for a break? In noticing this, I feel rather ridiculous. Here I am, nearly four years after my diagnosis, and I still have to fight my own urge to continually overdo and to constantly say "yes" to everyone and everything.

I have had a little time to myself in the evenings lately-- enough time to recognize that I am not as happy as I could be. It's not utter discontent, but it's also not the dizzy happiness of my fall. Nothing has really changed except that in the last few months, in my enthusiasm for new pursuits, I have gotten a little carried away.

I actually have gotten so busy that I have started forgetting important details. I forgot to confirm a sub for my yoga class a few weeks ago and on Friday, I completely spaced out my sister-in-laws' birthday party and went to bed. Both these happenings are highly uncharacteristic, and a great reminder about the stuff that really counts.

As I examine my discontent, I ask myself, "What can be cut out and which of my activities is stressing me out (in a bad way)?" I love teaching yoga, therefore I will not cut that. I love aerial dance, so I won't cut that. Lately, I mildly despise teaching school. Actually, it's not so much the work itself, it's really all of the extra work that goes into being a great teacher. I find that I would rather save my weekends and evenings for myself than be a "great" school teacher. I know that even at my worst, I am better than many, but it just is no longer my passion. Teaching is my passion, but not teaching high school, and not teaching full time.

Right at the moment I know I must just get through the school year but after that-- big changes need to happen. So in my mind, every time I get a free second, I am plotting and planning. "How do I work this? How do I keep doing the things I love without giving up my health insurance?" I guess for a person with MS, it is good that this is my biggest concern. Not a day goes by where I do not feel thankful for my good health, not just my good health, but the fact that I get to teach yoga and to fly (in aerial dance).

Now, how do I work this...

New Year, New Dreams

I usually think about a new year's resolution-- sometimes I keep it, sometimes I break it... This year I did not so much make a resolution, as set the intention to follow my dreams and opportunities wherever they might lead.

I have let MS, the shoulds and musts dictate far too much of my life for too long but in the last year or so I have really been trying to follow my dreams and to enjoy life as much as possible. I think it is paying off in health and happiness.

As I move into the year, I don't want to let anything hold me back. I want to wait on recording my latest ambitions, but I do have my sights set on getting out of public school teaching sooner than later and embracing a life choice that allow my to focus on yoga, acro and aerial dance.

Guest Post by Melanie Bowen

Setting Goals and Improving Health

An excellent quality of life is an important step of improving health and beating any type of sickness. Whether the prognosis is a rare cancer like mesothelioma or a long-term chronic disease like diabetes, taking time to set goals and write down accomplishments can result in benefits to any patient. Quality of life is not about being a patient; rather, it is about setting goals, taking steps to achieve the goals and then writing down the accomplishments.

Helping Health:

The National Cancer Institute points out that setting short term and long term goals can help take the mind off illness. By taking measures to remove the stress of constantly thinking about sickness, it is possible to improve quality of life throughout the day and week. Start you path to healing by setting personal goals.

Setting small daily goals is a key component to helping make quality of life better. Small goals might include fitting in a little extra exercise, trying something new for stress relief or even reading a chapter of a book for relaxation—all of which aid recovery.

Setting Long Term Goals:

Having long term goals gives hope and confidence. By having a few goals to look forward to reaching, it is possible to forget the problems and work toward something worthwhile. Whether the goal is something like having a child or something like graduating from school, it helps manage the situation.

The National Cancer Institute suggests that while long term goals are important to plan, it might also require some flexibility based on the situations that might arise.

Writing Accomplishments:

As goals are met, it is important to write it down as an accomplishment. This applies to both the short-term goals of a day or two and the long-term goals that might be months away. Writing down what was accomplished helps keep the mind focused on the positives rather than the negatives.

Having a reminder of the accomplishments goes further than just noting that a goal was met. It brings the focus on reaching set goals and working toward something as well as possible under the circumstances. It also provides motivation to continue trying to reach further goals and keep setting new tasks to reach toward as quality of life improves.

Goals and accomplishments are more than just a list of things to try before death: they are hope that life will continue on long beyond the estimates of doctors. Severe illnesses like cancer or diabetes might seem scary at first, but working toward something helps improve the situation for a better lifestyle while undergoing traditional treatment.

“Melanie Bowen is an awareness advocate for natural health and holistic therapies. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics"