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!

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.

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.

Dysautonomia Awareness Week 2011, Sept. 12-19, Pass it on!!!

Thanks to talented graphic designer Rachael Rodriguez for creating this awesome poster for Dysautonomia Awareness Week!

Remember to Email Dr. Oz About POTS on Thursday, September 1st!!!

Please help us raise awareness about Postural Orthostatic Tachycardia Syndrome ("POTS"). On September 1, 2011, we want 1000 people to e-mail the Dr. Oz Show about Postural Orthostatic Tachycardia Syndrome and ask them to do an episode about it. We want everyone to send the e-mail on the same day to have a big impact.

On September 1, 2011, please visit Dr. Oz's website and ask them to do a show on POTS: http://www.doctoroz.com/contact

We have included sample e-mails below if you don't want to write your own. Please RSVP to this 'event' to let us know if you will participate in this e-mail campaign. Please invite others to join us. We need as many e-mails as we can get!

SAMPLE LETTER FROM POTS PATIENT:
Dear Dr. Oz,
I am a (age) year old (gender) from (location). I am a fan of your show and I have diagnosed with Postural Orthostatic Tachycardia Syndrome ("POTS"). It took a really long time to get diagnosed because not many people, even doctors, know about POTS. The experts at Mayo Clinic say there are at least 500,000 people in the U.S. currently diagnosed with POTS, and that there are probably another 500,000 people in the US who have it, but have been misdiagnosed. Your show would help raise awareness about POTS amongst the general public, and even within the medical profession. Please do a segment or a whole show on POTS.
Thank you,
(your name)

SAMPLE LETTER FROM FAMILY/FRIENDS OF POTS PATIENTS:
Dear Dr. Oz,
I am writing to you because I would like you to do an episode on Postural Orthostatic Tachycardia Syndrome (POTS). My (friend/sister/spouse, etc.) has been diagnosed with POTS and it has really impacted (his/her) life. Mayo Clinic estimates that there are 500,000 patients in the U.S. currently diagnosed with POTS, and that there are probably another 500,000 patients suffering from POTS who have been misdiagnosed because there is a lack of awareness about POTS amongst the general public and in the medical community. Highlighting POTS on your show could go along way to increasing public awareness of this syndrome. Please do an episode on POTS on one of your upcoming shows.
Thank you,
(your name)

'Healing Hands'

Yet another wondrous mixed media piece, 'Healing Hands,' by my wonderful friend Marie C. Sakai, artist and editor at All Things Healing. View more of her work on her Facebook Fan Page or her personal blog.

Medical Anxiety

After my first trip to the ER in over two years this past Friday night, I am still reeling. I was reluctant to even go because I hate hospitals, needles, blood draws, and everything associated with anything medically related. But my blood pressure was high, ironically, hovering around 190 over 130 for about an hour before I decided it was time to succumb to the fact that I may need some professional help to get it under control. My blood pressure had never registered that high before and it didn't appear to be a fluke. I was weak, dizzy, nauseous and felt feverish. My mom drove me to our closest ER and there we sat for about an hour in the sweltering waiting room before being escorted into the ER where they had apparently just experienced what the male nurse formidably referred to as a "code." A code what? I wondered. My mind automatically jumped to the worst conclusion possible and assumed someone had just died there in the ER and that was surely the reason for the waiting room holdup.

The sickening smell of saline solution and rubbing alcohol filled the air of my room where a friendly nurse about my age promptly drew blood and started an IV. I am certain she sensed my anxiety right off the bat as I instructed her to please take as little blood as possible because I was already lightheaded. "You're going to be just fine, I promise." That was reassuring. Really it was. How often do we ever hear a doctor say anything like that with such certainty? She then did an ekg and said that it looked beautiful, and at 96 beats per minute it wasn't even tachycardic. That also helped me relax a bit. What didn't help me relax was the fact that I ended up laying there for a good six hours sweltering with no food or drink and a small cup of ice chips that I had spilled on the floor. My nurse was nice and did check in on me from time to time and once even came in to perform orthostatic blood pressure readings because I had mentioned POTS to her. They never did reveal the results or what they indicated but at least someone had sense enough to collect that kind of data.

I had a slight temperature at 99 point something, but nothing alarming. I was just flushed and felt overheated without sweating. I hate that feeling. Finally someone brought me a cool rag. At one point, the male nurse from earlier walked by and closed the door for "privacy issues." My mom said I must have been showing too much leg for his liking. That's what happens to overheated patients when left unattended. In the state I was in I lost all ability to reason or care about nuisances such as modesty. I was simply trying to keep myself cool. And at this point I was agitated and so famished from lack of food that I was about ready to murder the next nurse who told me not to eat anything until the doctor gave approval. Low blood sugar makes me do and say crazy things. The doctor who had come in at the beginning to examine me for all of about two minutes asking if I had consumed any caffeine that day was leisurely sitting in front of her computer down the hall enjoying a diet coke and a snack. Lucky her. I know this because I walked my weak self down the hall to beg for food and drink. Lo and behold the nurses instructed me I had to wait until I heard from the doctor and that it would just be a few more minutes.

Finally a nurse walks in, not to tell me I could eat, but to collect a urine sample that they had forgotten to collect in the beginning. To top it all off I had just emptied my bladder when I had gotten up to beg for food and water a few minutes before. So she hooked up another IV and let it run for a few minutes until I was ready to produce a sample. Finally, the night was nearly over. In walks a nurse with a cup of ice water for me to drink! I had never been so thankful in all my life! Then, my regular nurse walks in with yet another cup of ice water and 2 big and bitter pills to swallow called Cipro. In comes the doctor for a brief appearance to inform me they had found a probable urinary tract infection so it was the law that I had to take these pills before leaving the hospital. So two nurses, a doctor, my mom and my ex-boyfriend had all arrived and were all hovering about me in this tiny room waiting for me to swallow these damn pills. Talk about pressure. I wasn't convinced I had a UTI in the first place as I wasn't experiencing any symptoms. But I reluctantly swallowed the pills, breaking them up with my teeth first, making the doctor and nurses wait as long as possible for me to finish since I had waited so long for their company.

At last everyone else went out in the hall while my primary nurse unhooked me from everything and asked me how long I had been suffering from anxiety. I said that no one had ever diagnosed me with anxiety before but admitted that hospitals and medical stuff did tend to make me feel very anxious. Of course anxiety wasn't listed anywhere on any of my discharge papers, simply "probable UTI, tachycardia, and weakness" (they neglected to even address the weird high blood pressure issue). Although she herself was not a doctor and did not have the legal authority to diagnose, she revealed quite an astute observation, saying that I clearly exhibited symptoms of anxiety and she understood why: "all you did was go to the dentist to get your teeth out and ended up with a permanent health problem. I get it, believe me. I understand why you'd be anxious around doctors and places like this. You just can't let it define you though. Life's too short." This nurse was right. Life is too short to let one awful life-changing event define you. I was so many other things in my life before POTS, there was so much more to me than being sick. I hate being the sick girl and don't want to be thought of that way. So going to strive to get the old me back one small step at a time. My first goal: stay the heck out of the ER for as long as possible!

Am I Overly Sensitive?

After abruptly bursting into tears today after my mom announced that Trader Joe's no longer carries my favorite chocolate chip cookie ice cream sandwiches, I felt a little silly. I wondered if I perhaps have yet another problem to add to the list: over-sensitivity. Lately I have become a bit of a crybaby as the tears seem to come at the drop of a hat. The only other time I can recall crying over such seemingly insignificant things was senior year of high school when I might have been a bit stressed out/sad after losing my great grandmother.

One night a popular anchor on the 5:00 news callously announced that Keiko the whale, otherwise known as the orca Free Willy, had died. Just like that. She actually used the word "died." Didn't even use a euphemism for it, and then promptly moved on to the next story. Gave his death maybe ten seconds of airtime, at max. The second I heard the news (and the way she delivered it), the tears came shooting out of my eyes involuntarily. And I just couldn't control it. I cried and cried and cried and couldn't even pinpoint why I was crying so much over a whale and couldn't even bring myself to stop. I remember my mom feeling sorry for me, perhaps feeling sorry for how pathetic I was and saying, "Oh Kristina, you're just under so much stress right now. I know that movie meant a lot to you." And truth be told it did. That was my all-time favorite movie growing up. My best friend and I watched it over and over, maybe hundreds of times. We had even memorized the moves to Michael Jackson's music video at the end of the VHS tape. As special as that movie was to me, I remember thinking that no sane person would cry over such a thing.

The next day at school I had a heavy heart but put on my usual happy face. One of the few friends who knew that my real favorite movie was 'Free Willy' asked me if I had heard the news. Of course, some nosy and obnoxious boys who sat behind us asked "what news?" and she responded with "Keiko the whale passed away yesterday." The waterworks exploded from my eyes again. In the middle of material science class. In a room full of boys. I was crying at school, more like sobbing. And there was nothing anyone could do to comfort me. It didn't help that the two boys behind us were now laughing as if my sudden tears were the funniest and most outrageous thing they had ever seen. Embarrassed beyond belief, I excused myself to the bathroom and took a long lunch that afternoon, even arriving late to the latter half of the class. Luckily the teacher was sensitive and didn't say anything to me at all, probably didn't want to ruffle my feathers. Here I was, number one in my class, the president of nearly every club and student organization with a reputation to uphold and I was hysterical, over a whale. A whale I had never even met.

The next few days were even more torturous as the two boys, as luck would have it, shared many classes with me. They began to torment me. Of course, it wouldn't have looked much like tormenting to an outsider. All they did was say the words "Free Willy" or "Keiko the Whale" mockingly in my presence and I burst into tears. This torture went on for about a week. It was like a conditioned response. Anytime I heard the whale's name I cried.

Lately the same kind of thing has been happening to me. Not about any one thing in particular, but just little things that will set me off. For instance last night I opened the fridge to make myself a sandwich and grabbed the pickle jar from the top shelf. Attached to the pickle jar was a sticky (and heavy) jar of caramel that fell smack dab on the top of my left foot, same side I am still recovering from a sprained ankle on. I have a nasty bruise on top of my foot today and it hurts when I touch it but it is really no big deal compared to everything else going on in my life. And in the grand scheme of things it was nothing that should have made me cry. The problem is, it's not any one big bad thing that elicits the tears, but rather a series of little things that happen every single day and the cumulative effect of all this bad luck seems to be me bursting into tears literally at the drop of a jar. Lately it just seems like the universe is against me and dispensing subtle daily reminders of just how powerful and relentless he is. Like a big, fat bully. Mr. Universe is not always kind, as many of us know all too well from dealing with chronic illness on a daily basis for years on end. But does Mr. Universe really have to throw a sprained ankle, mounting medical bills, an excrutiatingly painful 3-month TMJ headache that insurance won't cover, relatives who desperately need to see the shrink, an overheating imac and a broken printer into the mix? Take away the one thing that gives me any solace (TJ's ice cream sandwiches) and it's a recipe for tears. Maybe because it feels like Mr. Universe is launching a personal attack on me.

I feel pathetic when I cry over such minor issues, but I really can't seem to control it lately. Is there something wrong with me? Other than the obvious of course. Do any of you experience moments of extreme and sudden sadness? What do you do to combat these emotions?

Extreme Couponing for Natural Products

I've done it again! Another extreme couponing expedition but this time I focused on obtaining more natural products.

-2 bottles of Renpure Organic Conditioner (free after rebate)

-4 bottles of Alba Shower Gel

-1 Alba Shaving Cream

-2 Tom's of Maine Bars of Soap

-1 Tom's of Maine Mouthwash

-3 Bottles of Langer's Cranberry Juice (free with coupon)

The grand total for all this? A whopping $12.72. The full retail value of these items totals $90.21. That's an approximate 87% savings!

For more detailed information on how you too can practice extreme couponing, please visit Coupon Pro Blog.

Extreme Couponing with A Chronic Illness

I have often watched TLC's new series 'Extreme Couponing' in bewilderment, not because they get hundreds of dollars of merchandise for mere pennies, but because they often have to stand for a half hour and wait while the checker rings them up. Immediately the concept of extreme couponing appealed to me because I've always been a great shopper. Meaning I'm a careful shopper and always manage to get the best value and most bang for my buck. I consider myself a responsible shopaholic. Although I don't shop nearly as much as I used to back in the good old days (pre-POTS days, that is) whenever I shop now I make it a firm policy to never pay full retail price for anything. I strive to buy every item on sale and now with a coupon if possible.

Several of my friends have dabbled with couponing and I have always wanted to try a more aggressive approach to saving money. So far I have made two extreme couponing trips to my local drugstores and have spent a total of $61.45 including sales tax. I have also received $18 back in Rite Aid UP Rewards and Walgreen's Register Rewards (cash equivalent gift certificates that can be spent on any merchandise but only in their store).

Although I did not get everything free as the extreme couponers on TV do, I ended up with over $250 (retail value+sales tax) worth of merchandise for my $61.45 including all sales tax.

Here's what I got, along with the full retail value of the items:

-4 razors ($45)

-20 razor cartridges ($60)

-2 shaving gels ($8)

-3 bottles of shampoo ($20)

-1 bottle of organic conditioner ($7)

-1 body wash ($6)

-1 antibacterial hand soap ($4)

-2 bar soaps ($5)

-2 deodorants ($8)

-1 lotion ($6)

-3 tubes of toothpaste ($10)

-1 toothbrush ($4)

-1 chapstick ($4)

-2 mascaras ($25)

-4 packages of disposable heating pads ($20)

-2 candy bars ($1.50)

Most of these items were things I would have ordinarily purchased at some point in the near future. By using coupons and watching sales, I was able to stock up on essentials like razors that have no expiration date and save quite a bit of money by starting a toiletry "stockpile" so I won't have to go out and buy an item at full price when I run out. I can simply shop in my own stockpile where I paid much less than full price for each item. Couponing and careful shopping can be a great way to save money with a chronic illness. Be careful not to buy things you don't need or would never use. Make sure that you at least know someone who will use the item because you almost always end up paying sales tax for it even if it is "free." If your stockpile builds up to excess, you can always donate extra toiletry items to a local shelter or food items to a food bank to ensure that nothing ever goes to waste.

My advice for anyone with physical limitations or chronic illness is to not let it discourage you from trying extreme couponing. Most of the preparation and careful planning for shopping trips can be done in the comfort of your own home, clipping coupons from the Sunday paper and printing coupons online. Make sure you have a good game plan in place before even entering the store. Lay your coupons out and determine where sales are advertised for your coupon items. I like to tape a coupon to the corresponding page of the store ad so if there happens to be a discrepancy or mistake made at the cash register I can easily and efficiently show the sale price to the checker. It also helps to look over your receipt once you get back to the car but before you leave the store parking lot just in case a mistake has been made so you can go back in and have it corrected immediately.

To my fellow potsies, make sure you are well hydrated, have a full stomach and wear compression stockings if you can. If you may need something like a walker or a wheelchair, be sure to bring it with you or use a motorized cart as you may be expected to stand at the cash register for several minutes while the checker enters your coupons. I personally like to wear sunglasses if I'm in a store for very long as the fluorescent lights tend to bother my eyes. I also bring a water bottle and a protein-rich snack in my purse (just in case) and prefer to take someone with me who can help double-check my math and be on the lookout for unexpected deals in the store. Your experience should be comfortable, fun, and rewarding! Make an afternoon, or better yet an evening of it, as stores tend to be much less busy and have shorter lines after 7 pm. Investing a little money up front and getting an abundance of merchandise in return should enable you to start a small stockpile of your own and contribute to the thrill of extreme couponing.