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.