Dear doctors...
What if someone came up to you and said "suck it up" ??
How would you feel if someone told you that you needed to wake up at 4am daily to do an infusion?
How would you handle having to tape your chest with Saran-Wrap 2x a day to be able to shower?
My guess is that you would not be happy, or accepting, and you might even feel weak. Because just like me, you are human too!!
So when you come to my bedside in the hospital (after I've already had 70 surgeries, do a 3 hour infusion nightly in my house, and wrap myself with Saran-Wrap daily) and tell me I MUST ADD another 3 hour infusion starting at 4AM....realize that I am like you. A human with feelings and a quality of life. Would you want to do that? You may think not but really, I am...just like you!!
Despite my medical challenges, I wake up daily, drive 45 minutes 1 way to work, and teach all day. I teach 3-5 year olds with disabilities and other challenges. And I love it. It's the only normalcy in my life. So doctors..understand that my only normalcy is important and needed for my quality of life. Work with me, talk to me, compromise with me. Please help me instead of saying, " This is your only option to live..."
REALLY????
I've tolerated 22 years of doing what the doctors have asked of me. But I just CAN'T do this!
Can you blame me???
Stacy
Stacy
Monday, October 22, 2012
Thursday, April 12, 2012
Hope is restored!!
Everyone who knows me... knows of my love and obsession with the news. Put Tom Cruise infront of me.. or the Eyewitness News Van and I will take pictures of the news van...so when I had the opportunity to meet with one of the most highly esteemed medical correspondants on the local news channels (ABC)....who also happens to be a rheumatologist in NYC...I was instantly hopeful that this doctor would have answers for me. If he couldn't help me, I was sure he would know someone who could. And I was right :)...
Words cannot describe how nervous and anxious I was going into todays appointment. Mostly because of the false hope I received from the Dr. I saw at John's Hopkins but I was so worried that Dr. Jay Adlersberg from ABC's Channel 7 Eyewitness News would tell me he couldn't help me and then where do I go from there?
Thankfully, my fears were quickly eliminated as his cool, calm, bedside manner put me at ease and he took my full detailed history. He could not believe all of my medical problems and that I still walk around with a smile. He told me, "I thought I had seen it all...."
And then... I told him I was a twin. A twin! An identical twin?? Who's "normal.."?? "I know just the people to call", he said..and within minutes 3 doctors (two geneticists and one gastroenterologist from Mt. Sinai Medical Center in NYC) were on the phone.. "Hi this is Dr. Jay Adlersberg.... no not for a news story.. I have a patient I know you will be interested in.." is what we heard him say on the phone. Hope has been restored!!
Dr. Jay Adlersberg told me that he does not believe that my problems are rheumatological (his specialty) but will be sending me for a lot of blood tests to make sure that's true. I will be seeing a team at Mt. Sinai who specialize in genetic issues (which my problems should be) and they also specialize in researching twins!!
And the best part..... He told me he'd like to use my story on the news... ."Identical twins who are genetically different!" Sooooo exciting!!!
It was an amazing day for me..in so many ways!
Stacy
Wednesday, February 22, 2012
1 Year Later
The top picture is of me one year ago, tomorrow, February, 23, 2011. After being away from home for just about 8 months... I was ecstatic to come home but wheelchair/walker bound and not really functional. How far I've come in a year. I'm walking, back to teaching and that nightmare is a year in the past!!
Pictures 2-5 are of me this past year and now.
Thank you to everyone who has supported me and who continues to support me through the difficult challenges in my life.
Love,
Stacy
Ps: Many of you have asked if I have heard back from the Dr. from John's Hopkins. I have not and I am sure at this point I won't. It's ok.. I'm not giving up!
Tuesday, January 24, 2012
Hope Floats... NOT
Those who know me would say that it takes a lot to frustrate me. I have learned to handle bad news like a pro but I am a human who has feelings..just like the rest of us and I felt like I needed to write to the doctor who is treating me at John's Hopkins one last time to let him know from his patient's point of view what it's like to have hope taken away. Below is my letter to him and his quick response back to me. We will see if it goes anywhere. As they say... "Hope floats..." NOT!
********************************************************************************
Dear Dr. Sack,
When I came back home to New Jersey from the trip to John's Hopkins, this past July, and reported to my family and friends how the appointments went with Dr. Hucheons (GI) and you..I was filled with hope that a doctor had wanted to take on the challenge of "Stacy." That there was a chance that I would not have to have a Hickman port in my chest for the rest of life or give myself painful Lovenox injections 2xs a day indefinitely.
Words cannot explain how disappointed and hopeless I feel in the 6 months that have elapsed since my appointments with you and I have not heard a word about the results of the fancy CT Enterography that you requested I undergo (and you confirmed you received ) or what the plan will be, if any.
I always wish that my doctors would be open and honest with me. If they feel they cannot offer me help that they tell me up front that their services are not for me.It is so upsetting ,for me and my family, that I took 2 trips to your facility looking for help... and I left each time with that hope of finding help, to actually finding nothing at all.
I just thought you would want to know how upset and disappointed I am.
Your Patient,
Stacy Hirschberg
Below is a message from my blog The Light at the End of the MRI :
2009
"I must say that I've been to hundreds of doctors offices through the 20 years of my "medical life" and I have never ever encountered such kind, caring staff who love their job, do the maximum, and are out for the patent's benefit. We were quickly ushered into a private waiting area, vitals we're taken and we were waiting for the doctor .. not 2 minutes later he walked (more like bounced) into the room and immediately we knew-- this is a good guy. He made us feel at ease, talking about our lives, baseball and our trip down . He took us into a medical room-- hanging Uncle Mickey's jacket for him, offering him coffee, and had us sit down to start the visit. We were in there for 2 hours and 20 minutes. He eased into the medical review and since Uncle Mickey accompanies me to most of my important doctors appointments, he's quite familiar with my history and the two of us make a great team. (for those of you who don't know-- Uncle Mickey is also a doctor) Dr. Sack, gave me the most thorough evaluation that I've ever had.. He didn't leave any stones unturned and was so grateful that I came to see him we kept saying "no, we thank you !" To make a long story short (if that's possible... ) He thinks that he can help me.. He feels confident that he's going to research me and come up with an answer ... either he'll figure out a way to fix me, or I'll be like this forever... but I will get an answer (which is worth so much !) I currently feel like a ticking time bomb.. and I may always be but at least we'll know. He does studies on mice .. that have my problem, does it get any better than that?? This man has seen what I have (in lab mice ) but still.. he's worked with it .. So we're confident that I'll get answers. "
Dr. Sack's Response:
Dear Stacy,
Thank you for your note. I certainly understand your frustration. Unfortunately, your follow-up has not gone smoothly and this has many explanations but no excuses. I’ll check again today to see how to get things back on track for you.
GHS
********************************************************************************
Dear Dr. Sack,
When I came back home to New Jersey from the trip to John's Hopkins, this past July, and reported to my family and friends how the appointments went with Dr. Hucheons (GI) and you..I was filled with hope that a doctor had wanted to take on the challenge of "Stacy." That there was a chance that I would not have to have a Hickman port in my chest for the rest of life or give myself painful Lovenox injections 2xs a day indefinitely.
Words cannot explain how disappointed and hopeless I feel in the 6 months that have elapsed since my appointments with you and I have not heard a word about the results of the fancy CT Enterography that you requested I undergo (and you confirmed you received ) or what the plan will be, if any.
I always wish that my doctors would be open and honest with me. If they feel they cannot offer me help that they tell me up front that their services are not for me.It is so upsetting ,for me and my family, that I took 2 trips to your facility looking for help... and I left each time with that hope of finding help, to actually finding nothing at all.
I just thought you would want to know how upset and disappointed I am.
Your Patient,
Stacy Hirschberg
Below is a message from my blog The Light at the End of the MRI :
2009
"I must say that I've been to hundreds of doctors offices through the 20 years of my "medical life" and I have never ever encountered such kind, caring staff who love their job, do the maximum, and are out for the patent's benefit. We were quickly ushered into a private waiting area, vitals we're taken and we were waiting for the doctor .. not 2 minutes later he walked (more like bounced) into the room and immediately we knew-- this is a good guy. He made us feel at ease, talking about our lives, baseball and our trip down . He took us into a medical room-- hanging Uncle Mickey's jacket for him, offering him coffee, and had us sit down to start the visit. We were in there for 2 hours and 20 minutes. He eased into the medical review and since Uncle Mickey accompanies me to most of my important doctors appointments, he's quite familiar with my history and the two of us make a great team. (for those of you who don't know-- Uncle Mickey is also a doctor) Dr. Sack, gave me the most thorough evaluation that I've ever had.. He didn't leave any stones unturned and was so grateful that I came to see him we kept saying "no, we thank you !" To make a long story short (if that's possible... ) He thinks that he can help me.. He feels confident that he's going to research me and come up with an answer ... either he'll figure out a way to fix me, or I'll be like this forever... but I will get an answer (which is worth so much !) I currently feel like a ticking time bomb.. and I may always be but at least we'll know. He does studies on mice .. that have my problem, does it get any better than that?? This man has seen what I have (in lab mice ) but still.. he's worked with it .. So we're confident that I'll get answers. "
Dr. Sack's Response:
Dear Stacy,
Thank you for your note. I certainly understand your frustration. Unfortunately, your follow-up has not gone smoothly and this has many explanations but no excuses. I’ll check again today to see how to get things back on track for you.
GHS
Sunday, January 8, 2012
Happy New Year!
Happy New Year!! As I sit in my best friend Rachelle's house watching the ball drop...There were celebrations, toasts and is it really 2012 already??
I reflect back to last year at this time... the nurses all filed into my room at Kessler Institute for Rehabilitiation! Just 1 minute before 12... so they could watch the show and so I would not be alone. I was one of the only patients still awake (I was considerably younger than the typical patient on that floor.) I was in a wheelchair, and in 2 full leg braces. I had a cast on my arm and there were still months of inpatient recovery ahead of me. When I was in the hospital it felt endless and as though I would never recover to the point where I would be declared healthy enough to go home.
Just 10 months after being discharged from inpatient rehabilitation... I am walking and I have no knee braces, crutches, or casts! I am thankful everyday for how far I have come and how hard I have worked. I am still facing surgeries... I am still facing a life-long degenerating condition but I am happy and as "healthy" as I can be at the moment. It is hard to believe how far I have come in just 10 months since coming home.
Update: I continue to recover my extensive wrist/arm surgeries from the summer. I go for "aggressive" (as the doctors have written on the prescriptions for the therapists) occupational therapy (OT) 4 days a week and I am still rehabilitating my knees at Physical therapy (PT) 3 days a week. Unfortunately, I am having some complications but my surgeon is active in helping find a solution! Due to the vitamin-C deficiency and the laxity of ligaments in the knee, my kneecap has fallen off track again so we are trying all methods again before surgery to fix this.
My port was exchanged 2 months ago (in the same spot in my chest) and unfortunately it did not fix the lumps on the line but I have come to terms with just living with it and doing the nightly 2 1/2 hour infusions to keep my body together. I had a rude awakening during the October snow storm when I lost power for 6 days and my IV medication that needs to be kept cool as well. Both knee incision and my arm opened up-- so that ruled out ever being able to stop the stuff (I only missed 5 days of medicine)!
My Nephew Andrew is doing well! I can't believe he is 8 months old already and he's growing, happy and thriving!! Such a blessing after his rough first few months into this world!
So when I look back at my 2011 it was hard, lonely, painful and horrible being away from home for about 8 months but without that year, I would not be who I am today (down 60+ pounds) and I would not have found out how strong of a person I really am!
Here is to a wonderful 2012!
Love, Stacy
I reflect back to last year at this time... the nurses all filed into my room at Kessler Institute for Rehabilitiation! Just 1 minute before 12... so they could watch the show and so I would not be alone. I was one of the only patients still awake (I was considerably younger than the typical patient on that floor.) I was in a wheelchair, and in 2 full leg braces. I had a cast on my arm and there were still months of inpatient recovery ahead of me. When I was in the hospital it felt endless and as though I would never recover to the point where I would be declared healthy enough to go home.
Just 10 months after being discharged from inpatient rehabilitation... I am walking and I have no knee braces, crutches, or casts! I am thankful everyday for how far I have come and how hard I have worked. I am still facing surgeries... I am still facing a life-long degenerating condition but I am happy and as "healthy" as I can be at the moment. It is hard to believe how far I have come in just 10 months since coming home.
Update: I continue to recover my extensive wrist/arm surgeries from the summer. I go for "aggressive" (as the doctors have written on the prescriptions for the therapists) occupational therapy (OT) 4 days a week and I am still rehabilitating my knees at Physical therapy (PT) 3 days a week. Unfortunately, I am having some complications but my surgeon is active in helping find a solution! Due to the vitamin-C deficiency and the laxity of ligaments in the knee, my kneecap has fallen off track again so we are trying all methods again before surgery to fix this.
My port was exchanged 2 months ago (in the same spot in my chest) and unfortunately it did not fix the lumps on the line but I have come to terms with just living with it and doing the nightly 2 1/2 hour infusions to keep my body together. I had a rude awakening during the October snow storm when I lost power for 6 days and my IV medication that needs to be kept cool as well. Both knee incision and my arm opened up-- so that ruled out ever being able to stop the stuff (I only missed 5 days of medicine)!
My Nephew Andrew is doing well! I can't believe he is 8 months old already and he's growing, happy and thriving!! Such a blessing after his rough first few months into this world!
So when I look back at my 2011 it was hard, lonely, painful and horrible being away from home for about 8 months but without that year, I would not be who I am today (down 60+ pounds) and I would not have found out how strong of a person I really am!
Here is to a wonderful 2012!
Love, Stacy
Tuesday, October 11, 2011
"Just live with it..."
Dear Doctors...
Feel free to put a Hickman power port surgically into your chest and keep it there indefinitely. Then, when you tell me it is hurting you terribly I will tell you to "live with it..." Let me know how that feels and then tell me how you would handle it better than I am?!
Thanks, Stacy
Feel free to put a Hickman power port surgically into your chest and keep it there indefinitely. Then, when you tell me it is hurting you terribly I will tell you to "live with it..." Let me know how that feels and then tell me how you would handle it better than I am?!
Thanks, Stacy
Sunday, October 2, 2011
The long...overdue..update...
First let me say that I apologize for not updating my blog sooner. Adjusting back to full time work, then 3 hours of PT/OT after work 4xs a week has taken some toll on me. It is great to be back into a new school year. After having been out an entire year last year...so much has changed!
My recovery remains status quo. My long arm incision opens up, my surgeon wraps it for a few weeks and then it closes. And then it will open up again... this recovery will be very long. Next week I will be starting Kenalog injection shots into the scar as well as laser treatments because I've formed a large keloid over part of the incision and if that is not broken up soon...I will not regain normal function of my wrist or arm! I hope this doesn't break my scar down so much that the whole thing unravels.
During some recent vitamin blood tests that I had, it was determined that I am lacking a lot more than just Vitamin C in my body. My doctor told me it is "unheard of " to have "no traces of ..." Vitamin B1 in my body. He said that just does not happen with a woman in the USA. Well...you're looking at her! (Great.....) I got Zinc, Vitamin B1, and Vitamin B12 shots at his office and we are hoping that boosts me up some. He did say that Vitamin C is not abosorbed unless B1 is present in the body so maybe that's been my problem? And why has it taken since 1999 to figure this out!?
My port is going to need to be re-evaluated soon. There has to be a better way of administering Vitmain C into my body than via this Hickman port in my chest. Ports just are not meant to be in for life. I have 2 lumps that are painful and growning around the port in my chest. My Vascular surgeon is not sure what it is...I will probably need another venagram under anesthesia within the near future to assess what they are.
It looks unfortunate although true that the Dr. at John's Hopkins has once again dropped off the face of the earth. This is the second and LAST time I will be going there (hear that Uncle Mickey) to have my hopes raised with his "I really want to help you antics" and then he disappears with not a trace of help. I recently emailed him and he said, "I will look into it for you..." and I never heard back. Very upsetting and frustrating to have hopes so high and than dashed. I'm over it.. I'm over him!
Baby Andrew continues to do well at home! He's growing, happy, and so much fun!
To be continued...
Stacy
My recovery remains status quo. My long arm incision opens up, my surgeon wraps it for a few weeks and then it closes. And then it will open up again... this recovery will be very long. Next week I will be starting Kenalog injection shots into the scar as well as laser treatments because I've formed a large keloid over part of the incision and if that is not broken up soon...I will not regain normal function of my wrist or arm! I hope this doesn't break my scar down so much that the whole thing unravels.
During some recent vitamin blood tests that I had, it was determined that I am lacking a lot more than just Vitamin C in my body. My doctor told me it is "unheard of " to have "no traces of ..." Vitamin B1 in my body. He said that just does not happen with a woman in the USA. Well...you're looking at her! (Great.....) I got Zinc, Vitamin B1, and Vitamin B12 shots at his office and we are hoping that boosts me up some. He did say that Vitamin C is not abosorbed unless B1 is present in the body so maybe that's been my problem? And why has it taken since 1999 to figure this out!?
My port is going to need to be re-evaluated soon. There has to be a better way of administering Vitmain C into my body than via this Hickman port in my chest. Ports just are not meant to be in for life. I have 2 lumps that are painful and growning around the port in my chest. My Vascular surgeon is not sure what it is...I will probably need another venagram under anesthesia within the near future to assess what they are.
It looks unfortunate although true that the Dr. at John's Hopkins has once again dropped off the face of the earth. This is the second and LAST time I will be going there (hear that Uncle Mickey) to have my hopes raised with his "I really want to help you antics" and then he disappears with not a trace of help. I recently emailed him and he said, "I will look into it for you..." and I never heard back. Very upsetting and frustrating to have hopes so high and than dashed. I'm over it.. I'm over him!
Baby Andrew continues to do well at home! He's growing, happy, and so much fun!
To be continued...
Stacy
Subscribe to:
Comments (Atom)