Name: Sheri Lyn Schwar
Gender: Female
Stage in TA (newbie, old pro/guru, in remission): Battle-scarred veteran who remains in remission. (Thank Gawd!)
State or Country: Pennsylvania
Hi Sheri, Please tell me something about yourself, a little background. How did you find out that you had TA?
After having numerous, vague symptoms coupled with heart failure, all over a thirteen month period, my cardiologist who was examining me discovered I had bruits various places in my body: my neck, my stomach and my back. (Nine bruits in all) He then suspected that I did not have the previously assumed diagnosis of post-partum cardiomyopathy, but some type of Vasculitis. It was then my mother, a cleaning lady, started going through medical books and discovered I fit the criteria needed in order to be properly diagnosed with Takayasu's Arteritis. One week later, an arteriogram was preformed and it was clearly obvious that I, indeed, had TA. One dose of prednisone later that day put me back to human again. Ahhhhh, Prednisone. Love it or hate it, it's miraculous!
Since TA is a smoldering/brewing disease, did you find out right away that you had TA or how many years before finally being correctly diagnosed with TA?
I started having symptoms of TA during my last trimester of pregnancy and, until I was diagnosed with TA, it was thirteen months later.
How do you feel now? What was going through your mind? What’s your outlook like? What medications are you on right now?
These days I feel, for a lack of a better word, normal. I do everything healthy people do, aside from bungee jumping and riding roller coasters. When I was first diagnosed, I was scared to death and I hated God with the passion. (Just being honest!) I didn't have a positive outlook then, but now I know I am never given more than I can handle; there is always a silver lining; and though you think your troubles are a cross too heavy to bear, if you had to shoulder someone else's problems you probably wouldn't have the strength. Currently I am a part-time pill taker compared to the old me who used to take fifty pills a day. I take two kinds of blood pressure pills, Prednisone, of course, Cellcept, Zoloft (to keep me sane), Zocor (for high cholestrol), calcium and Fosomax when I remember to take them.
Have you been on any clinical trials for TA? Where and what was it like?
Both my husband and I participated in clinical trials. They drew my husband's blood because he's normal and mine because I'm abnormal. (Or so they claim!) If I am asked by my doctor to participate in a trial, it occurs at Johns Hopkins Vasculitis Center in Baltimore, Maryland. It's a simple process: a vampire sucks blood from me with a sharp needle. :)
What’s the best and biggest lesson you’ve learned dealing with TA?
There's been some tough lessons to learn after being diagnosed with a potentially life-threatening disease, such as: You can get disowned for getting a disease you didn't ask for! (That was a really tough lesson to learn!) You find out real quick who your true friends are and who in your family has the guts to stick it out with you. Other memorable lessons I learned is: breathing is something I'll never take for granted again; even a bad day is a good day; morphine is not a drug I'd wanna do on a regular basis; claudication hurts like hell; that almost dying is a peaceful experience, yet, scary as hell; survival instinct is my favorite instinct of all; that having a big, fat head, in the grand scheme of things, ain't so bad; that getting old is actually a good thing; you are stronger than you think, and never to let a day go by without telling those who love you that you love them, too.
Is there anything you’d like to tell other TA patients, family or people in general?
To the TA'ers, I'd say, It's not your fault you got this disease, and those who think otherwise are sicker than you.
And...
As my wise doctor once said to me, You will find that you are the glue that holds everybody together.
To the family members, I'd say, You are needed more than ever, and I guarantee that TA hurts you more than it hurts us, the ones who harbor it. We instinctively adapt to a disease because we have no choice but to adapt. What do you we need from you, the caregivers and spouses and family members? We need support, unconditional love and understanding. Also, do not hold us responsbible for the things we say and do, because a lot of the time it's not us talking, it's the disease or the drugs or the moods that come from being told you have a potential life-threatening disease.
To friends or others that know of someone who has TA:
If we are feeling blue, listen without speaking. If we are feeling overwhelmed, distract us from our pain. If we are feeling lonely, hold our hand so we don't feel so alone.
And finally....
Ta is not contagious, so lemme drink from your cup. (As long as you don't have something funky yourself!)
Your book, entitled "Vasculitis: Sick and Tired of Being Sick and Tired" is out in the market now and has been truly inspirational for me, being a newbie to this disease. After reading your book, it gave me a whole lot of perspective how to deal with this disease and to make lemonade out of lemons.
How can they get this book and can you encourage them to read and buy the book?
1) The book is available worldwide at your favorite online bookstore
2) You can also get a copy of my book by calling 1-800-AUTHORS
3) If you have trouble getting a copy of my book, please email the author, Sheri Lyn Schwar, at
Gender: Female
Stage in TA (newbie, old pro/guru, in remission): Battle-scarred veteran who remains in remission. (Thank Gawd!)
State or Country: Pennsylvania
Hi Sheri, Please tell me something about yourself, a little background. How did you find out that you had TA?
After having numerous, vague symptoms coupled with heart failure, all over a thirteen month period, my cardiologist who was examining me discovered I had bruits various places in my body: my neck, my stomach and my back. (Nine bruits in all) He then suspected that I did not have the previously assumed diagnosis of post-partum cardiomyopathy, but some type of Vasculitis. It was then my mother, a cleaning lady, started going through medical books and discovered I fit the criteria needed in order to be properly diagnosed with Takayasu's Arteritis. One week later, an arteriogram was preformed and it was clearly obvious that I, indeed, had TA. One dose of prednisone later that day put me back to human again. Ahhhhh, Prednisone. Love it or hate it, it's miraculous!
Since TA is a smoldering/brewing disease, did you find out right away that you had TA or how many years before finally being correctly diagnosed with TA?
I started having symptoms of TA during my last trimester of pregnancy and, until I was diagnosed with TA, it was thirteen months later.
How do you feel now? What was going through your mind? What’s your outlook like? What medications are you on right now?
These days I feel, for a lack of a better word, normal. I do everything healthy people do, aside from bungee jumping and riding roller coasters. When I was first diagnosed, I was scared to death and I hated God with the passion. (Just being honest!) I didn't have a positive outlook then, but now I know I am never given more than I can handle; there is always a silver lining; and though you think your troubles are a cross too heavy to bear, if you had to shoulder someone else's problems you probably wouldn't have the strength. Currently I am a part-time pill taker compared to the old me who used to take fifty pills a day. I take two kinds of blood pressure pills, Prednisone, of course, Cellcept, Zoloft (to keep me sane), Zocor (for high cholestrol), calcium and Fosomax when I remember to take them.
Have you been on any clinical trials for TA? Where and what was it like?
Both my husband and I participated in clinical trials. They drew my husband's blood because he's normal and mine because I'm abnormal. (Or so they claim!) If I am asked by my doctor to participate in a trial, it occurs at Johns Hopkins Vasculitis Center in Baltimore, Maryland. It's a simple process: a vampire sucks blood from me with a sharp needle. :)
What’s the best and biggest lesson you’ve learned dealing with TA?
There's been some tough lessons to learn after being diagnosed with a potentially life-threatening disease, such as: You can get disowned for getting a disease you didn't ask for! (That was a really tough lesson to learn!) You find out real quick who your true friends are and who in your family has the guts to stick it out with you. Other memorable lessons I learned is: breathing is something I'll never take for granted again; even a bad day is a good day; morphine is not a drug I'd wanna do on a regular basis; claudication hurts like hell; that almost dying is a peaceful experience, yet, scary as hell; survival instinct is my favorite instinct of all; that having a big, fat head, in the grand scheme of things, ain't so bad; that getting old is actually a good thing; you are stronger than you think, and never to let a day go by without telling those who love you that you love them, too.
Is there anything you’d like to tell other TA patients, family or people in general?
To the TA'ers, I'd say, It's not your fault you got this disease, and those who think otherwise are sicker than you.
And...
As my wise doctor once said to me, You will find that you are the glue that holds everybody together.
To the family members, I'd say, You are needed more than ever, and I guarantee that TA hurts you more than it hurts us, the ones who harbor it. We instinctively adapt to a disease because we have no choice but to adapt. What do you we need from you, the caregivers and spouses and family members? We need support, unconditional love and understanding. Also, do not hold us responsbible for the things we say and do, because a lot of the time it's not us talking, it's the disease or the drugs or the moods that come from being told you have a potential life-threatening disease.
To friends or others that know of someone who has TA:
If we are feeling blue, listen without speaking. If we are feeling overwhelmed, distract us from our pain. If we are feeling lonely, hold our hand so we don't feel so alone.
And finally....
Ta is not contagious, so lemme drink from your cup. (As long as you don't have something funky yourself!)
Your book, entitled "Vasculitis: Sick and Tired of Being Sick and Tired" is out in the market now and has been truly inspirational for me, being a newbie to this disease. After reading your book, it gave me a whole lot of perspective how to deal with this disease and to make lemonade out of lemons.
How can they get this book and can you encourage them to read and buy the book?
1) The book is available worldwide at your favorite online bookstore
2) You can also get a copy of my book by calling 1-800-AUTHORS
3) If you have trouble getting a copy of my book, please email the author, Sheri Lyn Schwar, at
sschwar@rcn.com
Thank you so much for your time.
No comments:
Post a Comment