Shop at Amazon to Support Dysautonomia Research!

Whether you're a big holiday shopper or simply make purchases from Amazon once in a blue moon, please shop through this link to support dysautonomia research. Simply use the Amazon search box on the right of the page to find the item you're looking for before making your purchase.

You can purchase ANYTHING from Amazon and 4-6% of your total purchase will automatically be donated to dysautonomia research without costing you a dime extra. There are no gimmicks here. All you have to do is remember to click through the box on the Dysautonomia International webpage before putting items in your cart.

I am on the Patient Advisory Board at Dysautonomia International, an organization I am proud to be a part of. Dysautonomia International has made funding research their primary objective in hopes of ultimately supporting the discovery of a cure or new and improved treatment options for patients. More research leads to more awareness in the medical community and at large. More research and better physician awareness will also help render dysautonomia more of a household name like lupus or multiple sclerosis instead of an illness that sounds obscure and and foreign to people. Education is key and it often starts with educating doctors and providers in the medical profession so that they can begin to recognize and diagnose dysautonomia, thus leading to more prompt patient treatment and better, more thorough and comprehensive care overall.

Bah Humbug!

The title of this blog post says it all. This year the holidays have been a bit lackluster for me to say the least. Today I definitely reached my boiling point. I have been too busy getting taken advantage of by my employer lately to enjoy much of anything. The reason I work a part time work-from-home job is because that's all I can do health-wise without being able to drive or work a regular predictable schedule. Unfortunately most employers equate working from home with being at their beck and call all hours of the day and night. I have spent a full 30 hours on my contract position this week (I only get paid for 15 hours) making calls because apparently all I am is a glorified telemarketer (+webmaster, +social media guru, +graphic designer, +full-fledged ad agency). All they really want me to do is sell, sell, sell memberships (plus fulfill all of my other roles perfectly each week with only 15 hours to do it in). I am at my wits end. When I obtained this position a few months back part of me wondered if having a stable work-from-home position was too good to be true and that the stability part was some sort of mirage...well turns out it may be. I am not sure how much longer I will last if I don't sell enough memberships. Either I will get fired or I will quit because talking on the phone this much every week has been wreaking havoc on my jaw which I had finally gotten calmed down until a few weeks ago. Now it's back into another painful TMJ flare-up from all the talking I've been doing when I'm supposed to be resting it.

You may be wondering what prompted all my recent telemarketing efforts. My supervisor had a very "serious" conversation with me about the lack of members I've been bringing in and basically gave me a warning that I need to bring in more members or else she will have to step in and do my job for me and collect the pay for it as well (leaving me out of a job completely). The worst part about this serious conversation is that she talked down to me in a very condescending way and I simply took it and said "I understand, I understand," repeatedly instead of standing up for myself and asking her not to speak to me that way all because I am so desperate to have a job for the income it brings in even though this is clearly the wrong job. It is so tough to be focusing every last ounce of energy I can muster up on a job where my efforts aren't even appreciated.

As you may know, my disability application is currently being processed. So I am trying my best to hang on to this job until then otherwise I will have no income whatsoever. So frustrating. Being sick is hard enough. But being sick and having to worry about finances is a predicament many chronically ill people are all too familiar with. I think it's ridiculous that we live in a country where we have to work so hard and wait tirelessly for months if not years to "prove" our rare, chronic and debilitating illnesses to the government so that they can dole out a a small stipend that enables the disabled to live below the poverty level and have to scrounge for every dime while they spend billions on wars overseas. The priorities of most politicians are severely skewed in my book.

I am sure this is an incredibly whiny and pathetic blog post for which I apologize. I am sure many of you can relate or know someone who is much worse off. The thing that has been adding insult to injury today is the fact that I did not receive an invitation to my cousin's wedding. The invitations were all sent out last week and I did not receive one. Although my cousin has grown into a beligerent, selfish alcholic in recent years, we still grew up together, and I never realized it until now that he apparently couldn't stand me. Or maybe its that he knows I won't buy him an expensive enough gift for his taste so he didn't bother to send me an invitation. I have always tried to include him in everything, always remembered him on Christmases and birthdays (although he has never remembered mine, or anyone else's for that matter). He shows up to my grandparent's house on Christmas day every year for about twenty minutes simply to collect his gifts without ever thanking anyone or bringing as much as a card to my grandparents who have always gone above and beyond for him his whole life. This is where his selfishness comes into play. Sure, maybe not everyone is generous by nature, but come on. He could do SOMETHING for them, ONCE IN AWHILE. I am not sure why he couldn't spare a couple bucks for a card or a box of candy to show his gratitude to them. He appears ungrateful for all the things our family has done for him. Growing up he had cars and cash thrown at him even though he was somewhat of a juvenile delinquent who dropped out of school. Yet somehow he lucked out and makes more money than anyone in the family although he didn't ever graduate high school. There is simply no excuse for him not to bring a card or candy to our grandparents on Christmas. But he never does. That kid disgusts me. He is 27 years old and should certainly know better by now. The sad thing is, his fiancee isn't much better in the social graces department.

Needless to say I have written them both off for now and trying my best not to take things to heart but it still doesn't change the fact that being snubbed by my own flesh and blood was hurtful and the damage has already been done. I am way too sensitive about things like this and unhealthily internalize my emotions but the truth is I have always felt like an outsider in my own family. At times I feel as if I'm adopted or something because some of my relatives don't treat me like family, especially since getting sick. It should certainly make for an awkward holiday if my cousin and his fiancee decide to show their faces at my grandparents house expecting their gifts like usual. It makes me sick to my stomach. If they show up I will have to go for a walk so I don't say something out of line, (even though they would have it coming!) At the end of the day I suppose I care way too much about what other people think of me and that gives them power over me. It truly is a waste of my energies to be focusing on this right now, I just can't help but have hurt feelings over this though. How much is enough? Times like this I wish I could distance myself from everyone and everything and check into a spa for a week or two...heck, maybe never check out. Find a way to live at a spa. Then my problems would be dissolved. Or at least easier to cope with. Next year my Christmas present to myself is going to be a guilt-free week at a spa.

Happy Holidays!!!

Whether you celebrate Christmas, Hanukkah, New Years, or something else, this time of year can be especially tiring. Remember to stay well hydrated and load up on the salty snacks at all those holiday gatherings. Dressing in layers also helps--especially at other people's homes where it may be warmer or colder than you're accustomed to--so you can add or remove articles of clothing as needed depending on your body's personal thermostat. Also don't be embarrassed to sit down and if possible elevate your feet or sit criss-cross-applesauce style on the floor. That helps me a lot. So does looking at pretty Christmas decorations. Here is my tree and decor for your viewing pleasure. Merry Christmas to all, and to all a good night!

Winter Update

The weather outside is frightful, my Christmas decorations are up, and so are my spirits. Although I am battling a very nasty head cold at the moment, I do have a few things to celebrate.

I started at my new job a few weeks ago and so far it is going quite well. For those of you who have been wondering, I am working full time (40 hours) and telecommuting, which I would highly recommend. Working from home enables me to put my feet up while working and work from my laptop in bed if need be. It is nice to have that kind of flexibility without having to worry about a commute. It took me nearly two whole years to find this job, but it well was worth the wait. My hope is that I can continue in this position for a long time. I am happy to report that so far I have gotten only positive feedback from my employer, and the work is interesting and engages my communication skills.

Last month I also finished my first articles for DINET's quarterly newsletter. I'm looking forward to seeing them published in the Fall Edition which should be online any day now. My usual indecisive self had a hard time choosing a topic, so I wrote two short articles instead: one on barometric pressure and one on being housebound during the holidays.

On another positive note, I managed to wrap all the Christmas packages with minimal frustration this year, and for once they actually look pretty (wrapping presents is not my forte). My pink tree is up and decorated to near perfection except for a strand of pink lights that is partially burnt out. I was pleasantly surprised to see that the Christmas episode of Glee featured a pink tree just like mine! (It was Brittany's, go figure.)

I think that's about it for now...just wanted to fill everyone in on some positive news for a change. Hoping the holidays go smoothly for everyone and that we all share in improved health and happiness this holiday season!