Sep 25, 2011

Updates and Downtime

I feel like it has been quite awhile since I have actually written an update on my life. I haven't had a whole lot of downtime lately, but finally had some tonight so thought I'd better take this opportunity to share. Many big changes have happened in the past month. First off, I am currently in the process of applying for disability. It is a lengthy, confusing process fraught with many forms, but luckily I have a good lawyer and a great paralegal in my court to help answer all my questions. Thankfully they are understanding and work with me over the phone so I don't have to worry about making it to any appointments in person, which is a huge relief.

During my last visit to the EP, he brought up the whole disability thing, saying that it would be a good idea to apply soon, kindly reminding me that it didn't mean I would have to be on it forever. Apparently it's much much easier to go off of disability than to get on it of course. So I gave in. Signed up with a lawyer. Paperwork is in. Now the waiting begins. Apparently it can take anywhere from 9 months to 2 years total to get a hearing before a judge. Had I have known that I would be sick for four years, I would have applied the day I got sick. But my optimism prevailed as I struggled to work, got laid off and sought stable work-from-home employment (the chupacabra of the job market it seems).

That said, I am proud to report that my job-seeking diligence has finally paid off and I am gainfully employed by a nonprofit organization working from home part-time. So far so good. I am their sole employee, the hours are flexible and my boss has been wonderful, providing me with plenty of guidance and input, which is rare to find nowadays, especially in a telecommute position. The only real downside? The pay is not great and not enough to support myself on. It is grant-funded and will last for a year. The good part is, it's okay with my lawyer that I'm working because I'm working such a limited number of hours exclusively from home and I'm not making over the allowed amount to still be considered disabled. Even if I am granted disability, I hope to still work part-time doing something meaningful whenever I am able. It renews a sense of purpose and accomplishment within me that has been missing for a long time. And working 15 hours per week makes the time fly by as I typically work a little bit each day.

Health-wise things have been a little better lately, knock on wood. After my extreme high blood pressure episode this summer, I'm not sure if I should be happy or unhappy to report that my blood pressure now hovers around the 90's over 60's most days. If I am up and about it sometimes gets to the low 100's. At night in bed it is 80's over 50's sometimes. Believe it or not I have never paid much attention to my blood pressure before and neither has my EP. Until the high blood pressure scare this summer, the only thing I ever noticed or paid any attention to was my high heart rate. I can't even remember what my blood pressure was like before the extreme highs this summer and the mild lows now. Mornings are still very rough for me and I am very sluggish so I try to do most of my work in the afternoons or evenings whenever I have the energy.

I am consuming copious amounts of salt again and plenty of fluids of course. Sometimes I eat so many chips even I get tired of them. However for those of you who need some tasty new chips to try, I am currently loving Trader Joe's Hawaiian Style Hickory Barbecue Potato Chips. Crunchy chips, although satisfying and great for my salt intake, not so great for my TMJ, which has been a royal pain again lately. I am supposed to take flexeril (a muscle relaxant) for it every night before bed, but haven't taken any in at least a month because it lowers blood pressure and I don't need that unwanted side effect at the moment. I would really like to try botox for my TMJ so they can inject the specific problematic muscles that keep spasming and I won't have to rely on Tylenol and muscle relaxers for relief. Botox injections are supposed to provide relief from headaches for 2-3 months after the injection. I can't even imagine what I would do with myself if I had 2-3 months without TMJ headaches! It would be amazing! Sure I'd still have the whole POTS thing to deal with, but I feel like I would be able to devote more time/energy to exercise if I didn't get awakened every morning with intense pain.

This TMJ thing is really cutting into my sleep. And without sleep I am essentially useless. My POTS symptoms (namely wooziness/lightheadedness) are WAY worse on 4 hours of sleep a night than they are on the rare occasion I get a full 7 or 8. After the nights I have actually slept enough, my POTS symptoms are much, much more manageable. I know I definitely haven't been getting enough sleep lately because I can barely keep my eyes open watching my favorite shows with friends. I always used to be the energetic one, never the one who couldn't stay awake during a movie or a half-hour sitcom for that matter. Luckily they are understanding but I still feel rude when a friend goes out of their way to come visit me and I am nodding off mid-sentence. Is this "normal" for dysautonomia? I am wondering if it's somehow related to my lower blood pressure readings. I also can't help but wonder if this is how narcoleptics feel when falling asleep at inappropriate times. I try to yawn, eat, or keep myself moving so I won't fall asleep on my company, but it's all to no avail. I worry that friends will stop coming to visit me altogether if I fall asleep on them every time because they will assume I'm not up for company anymore.

However, I am hoping to be functioning more normally in the near future again because I will finally be embarking on an exercise research study. At last the folks in Texas faxed the paperwork to my doctor's office to enroll in Dr. Levine's Exercise Research Protocol for POTS. I am super-excited. It has been about 3 months since I first contacted them and have been anxiously awaiting their info. My next appointment with my EP is on October 13 and I hope to get started shortly thereafter once they check and record my current numbers. I ordered what looks like a simple heart rate monitor on Amazon (have yet to try it) that arrived yesterday and am ready to rock and roll on my recumbent bike. All I have left to do is create some upbeat playlists that will hopefully keep me motivated during workouts. Let me know if you have any song suggestions, I'd love to hear them!

Sep 17, 2011

Give Your Body A Boost!



I have been drinking Boost for a little over a month now ever since my grandpa persuaded me to try it when I had an upset stomach one day and couldn't manage to choke down any real food. I think I had eaten some bad food one night, vomited and vomited and felt horrible afterwards. Nothing appealed to me after that but I knew I needed to eat and drink the next day to keep my electrolytes stable. My grandpa swears by his Boost High Protein drink so I decided to humor him and give it a try. To my surprise, it was at least somewhat palatable and did give me an almost instant "boost" of energy. Luckily Boost does not contain caffeine or any other crazy stimulant ingredients, just vitamins, minerals and protein. It is, however, derived from milk protein so be careful if you're lactose intolerant.

I don't normally take any vitamins or special supplements but I try to be somewhat conscious of what I eat on a daily basis. That is, I pay attention to the important stuff like getting plenty of salt, potassium and fluid intake. I definitely wouldn't say I eat a perfect diet though. I still eat junky processed foods when I have a craving, but overall I try to get a good variety of different foods in so didn't think my body was really lacking anything in particular. Perhaps that's why I was really surprised by the way my body reacted to Boost. After a few days of drinking it, my resting heart rate was totally normal (60's sitting!) and only jumped to the 90's when I stood up. I realize that that jump still meets the criteria for POTS, however, it is much better than my usual jump into the 120's. I have been drinking one a day religiously for the past month and I am pleased to report that my numbers have been looking much, much better. I don't know why, maybe my body was lacking some essential nutrient contained in Boost, or maybe its pure coincidence and my POTS is finally cooperating for once, but I really have been feeling better most days. I hope this trend continues. I am definitely going to keep drinking Boost, it couldn't hurt. My gut instinct says it is at least partially responsible for the recent improvement in my numbers and how I feel.

Sep 15, 2011

Inspirational Art by EDS Patient Michaela Oteri



This inspirational piece entitled 'Hope' by Michaela Oteri depicts the beauty and quiet strength of people with chronic illness. See more of Michaela's art here. She is available to do custom commissioned pieces at an affordable price.

Sep 13, 2011