Sep 27, 2010

Dealing with Dysautonomia at the Dentist

As I sit here dreading my upcoming dentist appointment tomorrow afternoon, I wanted to remind myself of a few important strategies I can use to cope in the dental chair. Luckily, I have a very gentle and compassionate dentist (with very small hands) who lets me rest my jaw when needed. She also maintains a very clean and comfortable office atmosphere with televisions on the ceiling, headphones, and sunglasses: all things which serve to make the patient comfortable and ease potential anxiety. Most importantly, she knows I have a severe epinephrine sensitivity and gives me a special pain injection without epinephrine. She is also willing to work around my TMJ issues by giving me regular breaks to rest my jaw.

As I child I guess you could say I developed a severe phobia of dentists. I absolutely detested my childhood dentist and began to associate every dental appointment with pain and anxiety. Now that I'm a rational adult, things are a bit better. I know that my dentist is not out to get me and that regular treatment can help prevent pain and complications in the future. Going to the dentist the last couple years has become a lot more complicated though, partially due to my TMJ, and partially due to my case of POTS. Here are a few important things that have helped me get through recent dental appointments:

-No epinephrine! Epinephrine is an additive commonly found in pain injections like Novocaine. It can induce tachycardia in normal individuals. It actually makes me involuntarily shake and develop hives (an allergic reaction). Even if you are not allergic, ask your dentist for an epinephrine-free pain injection. They are just as effective without the potential side effects. Also, be aware of any other potential allergies and sensitivities including latex, and if you have any kind of allergy, inform your dentist or hygienist prior to treatment.

-Hydrate yourself long before your appointment (Gatorade is a great option). Bring a water bottle inside with you but be sure to ask when it is okay to take a drink.

-Eat a protein-rich snack right before the appointment. Bring something soft to eat afterwards like a pudding cup in case you get low blood sugar issues.

-Speak up for yourself. If you're uncomfortable or in unbearable pain, don't be afraid to tell your dentist. They want to keep the patient as comfortable and relaxed as possible. I opt to remain calm without the use of meds or laughing gas because of the side effects. Something as simple as listening to music or having a comfy blanket may be just enough to make your appointment more bearable.

-Close your eyes. Don't look at the giant needles as they enter your mouth. Keeping your eyes closed also helps keep that pesky bright light out of your eyes. If you want to keep them open, be sure to wear full-coverage sunglasses.

-Ask your dentist to explain the steps of the procedure to you as they go. Most good dentists will do this naturally. They will talk you through the procedure and alert you when you may feel extra pain or pressure so it doesn't come as a surprise.

-Ask your dentist if you should take any special care or precautions after the procedure. Sometimes patients will be advised to take ibuprofen or Tylenol for a day or two to minimize pain and discomfort. Others, especially those with heart conditions like MVP, will often be prescribed antibiotics to take as a precaution to avoid infection. Sometimes an ice pack or muscle relaxant will even be prescribed, especially for patients with TMJ or related conditions.

-Several shorter appointments are always easier for your body to handle than one or two long appointments. Pay careful attention to your scheduling needs. It is best for POTS patients to avoid early morning appointments at all costs, late afternoon or early evening is usually best. If there is one secret I have learned about dental offices it's that the late afternoon appointments are only going to last a couple hours at most because the offices always close down at a set time each day. Find out when the office closes and schedule your appointment two to three hours before closing time.

That is about it for my extensive knowledge of the dental world. Tomorrow I am going to try something new and ask my dentist if she will lay my head a little further back and keep my legs elevated a little higher in the air in an attempt to avoid woozy spells. My guess is that should help minimize my POTS symptoms a little more. Wish me luck!

I gleaned some more helpful information from an article on POTS and dental treatment which I will be printing out to share with my dentist:

Sep 22, 2010

Response to Anonymous Note



A few evenings ago after buying a wedding present and returning to my car fifteen minutes later, I was greeted by a note on my windshield saying, "NOT HANDICAPPED, JUST LAZY." Thanks ignorant person for making my day a little worse. People like that perpetuate the injustice surrounding invisible illnesses; they don't believe what they can't see.

I was so shocked, appalled and upset by this note that I posted the aforementioned incident on my Facebook page to vent and was simultaneously surprised and saddened by the amount of responses stating that the same thing has happened to many of us before. I decided that instead of wasting any more precious energy being angered by this ignorant individual, I would do something constructive and write him or her an open letter explaining my situation and why it is important to think twice before acting on a selfish impulse.


Dear Anonymous Note Writer,

Please, if you are going to invest the time and energy to write me a note and place it on my car in the pouring rain, at least have the guts to sign it. Or better yet, confront me in person. Even a first name would have been nice so that I could assign you a hypothetical identity, not that it would have even mattered because I am not as inclined to make snap judgments about people as you apparently are. And if you would have kindly provided your e-mail or phone number, I would have surely contacted you to defend myself and all the others suffering from invisible illnesses who have been wrongly accused of cheating the system.

The truth is, people like you represent all that is wrong with the world today. You judge a book by its cover without thinking twice about it. You must have seen me park in a handicapped parking stall with my sticker hanging in the windshield and walk into Bed Bath & Beyond without any apparent signs of physical distress or discomfort. I can even understand the thoughts that may have been running silently through your mind: Is that girl really disabled? She looks fine, how did she get that sticker? I wonder what is wrong with her, if anything at all? She is not walking with a limp or using a wheelchair...

Prior to getting struck with an invisible illness out of the blue, I may have been asking the same questions myself if I saw a young, seemingly able-bodied individual walk effortlessly into a store after parking in a handicapped stall. The difference is, I would have never had the audacity to confront them about it, because I like to assume that all people are inherently good and decent until proven otherwise. There is no need to attack or confront someone simply for using a handicapped parking sticker that they may very well need. I am sure there is the occasional incidence of a handicapped parking sticker being stolen from an elderly person, but I highly doubt that it happens too often. The fact is, most people who have a current handicapped parking sticker actually do need one. And it is not up to anyone other than their doctor to decide whether or not they need one.

What compelled you to write that note to me? Did it make you feel better about yourself to impose judgment on someone else? What did you hope to accomplish by leaving it anonymously? Were you waiting to see my reaction? To see if I would laugh, cry, or yell about it? Well, as I'm sure you probably witnessed from afar, I cried about it. I hope you are happy. You didn't accomplish much except for making a young, chronically ill girl cry and question her place in the world. It is hard enough to have an invisible illness, but even harder to have one at such a young age. Although I may have looked fine to you on the outside, on the inside my body is fighting an internal battle I'm sure you probably can't even begin to fathom.

By the time I got back to my car a mere fifteen minutes later, I was lightheaded and weak with a racing heart, and had to put my feet up on the dashboard so that the blood pooling in my legs would slowly circulate back upwards to my heart and brain. Once I became oriented and alert again, I noticed the note on my windshield and got out to retrieve it. My heart sank when I read, "NOT HANDICAPPED, JUST LAZY." Talk about adding insult to injury. After enjoying the first somewhat "normal" day I'd had in a long time, you, a complete stranger to me, try to bring me down by making an unfair and untrue assumption about me. I am anything but "lazy." Before getting sick, I could do it all. I was valedictorian, a first-generation college graduate, a television producer and a talk show host. Now, I exercise every single day just to maintain circulation in my legs. Not the typical characteristics of a "lazy" person, are they? Do you exercise every day? If you don't, does that make it acceptable for me to call you "lazy"? It certainly doesn't, because it is not my place to judge you. I do not know your situation in life. I resent being belittled by someone who knows NOTHING about me or my current circumstance. I can only hope that my illness is just temporary, but since you saw my parking sticker, you surely noticed that it is a permanent handicapped parking sticker because no one, including my doctors, know if this cruel condition will ever go away. This condition, should you care or bother to educate yourself about it, is called POTS, a form of dysautonomia. In a nutshell, it means my body's systems are constantly fighting to be normal and I struggle with debilitating symptoms on a daily basis. My electrophysiologist (heart doctor) issued me the sticker to help give me some independence back. Independence that you are lucky to have.

I am sorry if my young age and appearance offended you. You should be ashamed of yourself for judging a book by its cover and maybe next time you will think twice before making rash assumptions about others. And please, don't bother picking on people with handicapped parking stickers ever again. My best guess is, you don't know the half of what it's like to walk around in our shoes.

Sincerely,

Ms. DefyGravity
defy.gravity321@gmail.com

Sep 16, 2010

It's Dysautonomia Awareness Week!



In honor of Dysautonomia Awareness Week, I compiled a comprehensive list of resources for patients to turn to, especially those newly diagnosed. I know when my electrophysiologist first mentioned POTS, he sent me to the POTS Place website. From there I ventured onto Wikipedia and YouTube where I was relieved to find other people talking about this seemingly rare condition. The whole disgnosis thing was a little less overwhelming with resources to turn to. So, without further adieu, here is a list of resources I have turned to at one point or another:

Online Resources:
-DINET.ORG, including a very informative "POTS Place" section of website



There are also multiple personal YouTube pages worth checking out! Too many to list here!

Personal blogs on Dysautonomia and POTS are also great reads.

Facebook.com
-Demystify Dysautonomia
-12 More Pages
-The Faces of Dysautonomia
-The Dysautonomia Connection
-The Spoon Theory
-5 Awesome Potsies
-Living with Bob (Dysautonomia)

In-Person Resources, visit your local:
-Chiropractic Office
-Massage Therapist
-Physical Therapist
-Acupuncturist
-Naturopath
-Internal Medicine Doctor
-Cardiologist or Electrophysiologist
-Neurologist
-Endocrinologist
-Sleep Medicine Specialist
-Nutritionist
-Personal Trainer or Cardiac Rehabilitation Specialist
-Psychologist or Psychiatrist
-Hair stylist (to vent to!)

Yes, this list is overwhelming. And if you hate appointments as much as I do, you know what a mentally and physically draining chore they can be. However, assembling a strong team of specialists to call upon when needed is a helpful thing. When dealing with a complex illness like dysautonomia, it seems no one doctor can singlehandedly manage every symptom. Thus they refer you on to another doctor. And on. And on. Until one day the appointments finally slow down, and the doctors (if they are nice) may be reached via phone or email with questions or non-emergency concerns. My best advice is when you find a doctor that you click with, whether they are a chiropractor or a cardiologist, stick with them even if they are not a dysautonomia expert. If they are willing to listen to you, conduct some simple research and not "dysmiss" you, then chances are they are someone worth having on your team. What we all need are allies who will go to bat for us when the going gets tough (I am just full of cliches tonight!) I am not just talking about medical doctors and professionals here. One of the most helpful things for me has been building a solid network of friends and fellow sufferers to gain support and strength from. Facebook is a great place to start. There is also a program called "Meet Others" available through the DINET website.

Special thanks to talented graphic designer Rachael Rodriquez for creating the special Dysautonomia Awareness Week poster pictured above!

Sep 10, 2010

The Worst Kind of Anniversary

Today marks my three year anniversary with the infamous POTS. Believe it or not, I almost forgot about this day until earlier today when someone asked me how long I had been sick, and then it dawned on me: exactly three years. It was the day before September 11, 2007. For me, POTS struck suddenly and without much warning. After my surgery I was a changed person. Or at least my body was. Although I have gotten much better since then, this pesky condition still lingers.

What did I do on my POTSiversary? Well, nothing too out of the ordinary for a POTS patient. It was gray and drizzly here in the beautifully gloomy Pacific Northwest. I awakened early in the morning after finally falling asleep at about 2 a.m. the night before. Then came downstairs to prepare myself a lovely breakfast consisting of Trader Joe's chicken strips and Lays potato chips (for extra salt of course). Feeling relaxed after a large breakfast, I tried to fall back asleep, but to no avail. For some reason my phone was overwhelmed with calls and text messages this morning, although most were unaware of the significance of today, myself included at that point. I responded to some emails and finished writing a resume for a friend. Then had some dinner at home and went to a local coffee shop with an old friend from work. Although she does not have POTS, she does suffer from celiac disease and a thyroid problem, so she "gets" me. She asked how long I had been like this. And bam. Something to celebrate. Or rather, reflect upon. The only thing to celebrate is the fact that I have made progress against POTS. I have not let it completely overtake my life. And I believe I am getting better. Slowly but surely.

So here I sit writing this, eating a pan of ridiculously decadent brownies to commemorate the occasion. To sum up my anniversary with POTS: what could have been a dreary day was transformed into something more tolerable by gathering inspiration from good friends, consuming copious amounts of chocolate, and engaging in some intense introspection.

The song "Under the Weather" comes to mind today: