I Just Wanna BE OK

The Positive Side of POTS

Although it can be tough if not impossible to cope with a chronic illness on a daily basis and I can often sound like a Debbie Downer at times, I try to remind myself that no matter how bad things get, there are still a few positives to this condition. Very few, but they are there nonetheless.

1) Being able to eat salty snacks without any guilt or negative consequence

2) Connecting with other wonderful people who share similar conditions and experiences

3) Becoming a television/music/movie buff

4) Appreciating the simple things in life

5) Putting myself first and making my health a priority

I'm sure there are other things I could have listed, and many of you may have different positives to share. For me, these are the top five things I have gained from dysautonomia. I am trying to reframe the way I look at being sick, and although I have lost so much as a result of this condition, perhaps the things I have gained are the things that matter the most.

Midrodrine's Discontinuation Described as a "Business Decision"

Although I have never personally taken midrodrine, it is the next medication my EP wanted me to try. Now I don't know if that will even get to happen. I have many friends in the dysautonomia community who swear by this drug. It enables them to perform basic daily functions like sitting up and standing and apparently it has very few side effects. Overall the drug is safe and effective for many POTS patients. I can understand if a drug is pulled from the market due to safety concerns, but the fact that a perfectly safe drug will be denied to thousands of people for no good reason is preposterous.

I called the drug's manufacturer Shire to give them a piece of my mind. As a fairly rational person I understand that the customer service representative I spoke with was not personally responsible for this decision, but nonetheless I was dissatisfied by the way she addressed my complaint. She claimed that my call was the first she had received regarding this decision and admitted that she did not personally know much about this drug. All she knew was that there was nothing wrong with the drug, it was merely a "business decision" on behalf of Shire. I was outraged by the term. She then proceeded to "apologize for the inconvenience." Can you imagine the complete ignorance and audacity of that statement? I had explained to her in fairly simple terms the condition I suffer from, what the drug does, and what will happen to thousands of people if this drug is unavailable to them. And after all that, she considered it a mere "inconvenience," suggesting no other alternatives except to talk with my doctor to see if there is something similar available.

I'm sorry, I try to be patient with incompetent people in customer service positions, I know they are just reading from scripts, but don't they owe the customer a little more compassion? To at least pretend to care? Rather than reducing something serious and life-altering to a mere inconvenience? I urge all of you to flood the manufacturer with phone calls, contact your state senators, Erin Brockovich, and whoever else you can think of that may have enough influence to help override this callous "business decision."

For more information, visit:http://www.healthrelatedinfos.com/midodrine-removed-hypotension-drug-removal-1104/comment-page-1/

To contact Erin Brockovich, visit:http://www.brockovich.com/pharmaceutical.html

To contact your Senator, visit:http://www.senate.gov/general/contact_information/senators_cfm.cfm

Check out Chronically Kyli's video:http://http://www.youtube.com/watch?v=KixUacGfEE0

Special thanks to Lynn Adams for spearheading a Facebook group! Please join!http://http://www.facebook.com/home.php?#!/pages/Join-Lynn-Erin-Brockovich-for-proamatinemidodrine/144679335564964

And another Facebook group to join:

http://www.facebook.com/group.php?gid=112278522159695&ref=ts#!/group.php?gid=112278522159695&v=wall&ref=ts

My Body is My Temple...

Ever wonder why some people are free to abuse their bodily temples without consequence? I mean, we all know them: the people who smoke a pack a day, abuse drugs or alcohol, or even deprive their bodies of food or push them to athletic extremes without anything going wrong. Lately I have spent a bit of time pondering this issue. No matter how careful I am, or how much I respect my body, it does not show me the proper respect in return. I have always treated my body with respect (aside from a periodic junk food habit), but since getting sick I have treated it as my temple. I have avoided all consumption of alcohol, caffeine, and even candy (for a little while). I have tried my best to nourish my body, mind, and spirit all while battling a chronic illness. I am envious of people with normal autonomic nervous systems whose bodies can self-regulate, maintain homeostasis, and compensate for the trauma (excessive alcohol use, smoking, etc.) they put their bodies through.

The other day I was fortunate to take a brief walk on a trail near my house overlooking the water. It is a popular place for cyclists, joggers, and dog walkers. I made the walk to the closest bench and sat and watched the sunset while a girl about my age came panting up the hill, looking absolutely dreadful, and weighing all of about 80 pounds. By comparison, I looked way healthier than she did, and yet she was able to push her body to what looked like the brink of near death and claimed that she felt fine. She stopped to rest beside me, wheezing away. I gave her a minute to rest and asked her if she was okay. If I did something like that to my body on a hot day, it would likely result in an ambulance ride to the nearest ER. Although I usually withhold judgement on strangers, after talking to this girl for a few minutes, I realized how selfish she seemed. On what had to be one of the hottest days of the year, she couldn't bear to miss her daily run although everyone had warned her against it. I am not saying anyone "deserves" to be sick, but I had to wonder, just for a second, how this girl's body was holding up. And yet mine was not. For a brief moment, I thought, why me? Why not her? Don't get me wrong, I wouldn't wish dysautonomia on ANYONE; it is a horrible reality to endure. I just can't comprehend how some people are able to withstand so much more than others, and why the slightest change in heart rate or temperature can throw my body into a dangerous tailspin. My boyfriend's simplified explanation of it all is that my body is just fragile, and I need to do my best to listen to and accommodate it. But quite frankly, I am tired of accommodating my body and wish I could push it, not to the extreme, but just a little bit...say on a shopping trip that lasts for more than an hour, without consequence. I guess it is hard because I still remember what it feels like to be normal, and at the moment, I am really missing my former life in a healthy body. But for now, I will continue to treat it as my temple, and maybe with time, my body will begin to show me some respect in return.