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Jordan's Mommy

We're Going To New York!

11 posts in this topic

Hi all,

 

So I finally got up the courage to book an appointment with a juvenile scleroderma specialist in New York (we're in California). I have been putting this off for 2 years now, but finally decided it was time. I made the appointment for March 25th, and my daughter and I fly out on the 23rd. We're going to turn it into a mini vacation, so she doesn't associate New York with doctors for the rest of her life. This was a huge decision for me--part of me is so afraid that the doctor will tell me something that I don't want to hear, as I know he is a fan of methotrexate and more aggressive treatment. Jordan's other doctors seem so sure that her localized/linear scleroderma will run its course, then burn out. Her rheumatologist thinks she can even go off her Plaquenil without her sclero returning or progressing. Is anyone on this site a NY local who can maybe give me some advice as far as navigating the Big Apple?

 

Thanks,

Jennifer

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Hey Jennifer,

I dunno about NY but when I was going to Chicago my hubby gave me a whole stack of one dollar bills from the bank. I thought he was silly, but no he was right on. We didn't rent a car, so between airport shuttles, hotel, and eating it was handy to be ready with tip money.

 

Good luck & keep us posted,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Jennifer,

 

great news! :) I know it can be really scary trip, but probably you'll get some answers you've always wanted to hear. Sclero specialist knows better than normal rheumatologist. I'm surely not from NY (Europe, Finland, haha) but I bet you'll find out the ways and it'll be a trip worth of all the panicking and stuff.

 

Good Luck,

Emmi

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Hi Jennifer!

So glad to hear this, and I hope all goes well. Although its frightening, its so important! I'm sure everything will be okay and you will have a fun trip, some mommy-and-me time! Please let us know how it goes.

As for the navigating, can't help you there, I'm up in freeeeezing Canada!

Danielle

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Never been there either so I can't help with navigating either. I also think it's a good thing. Good luck to you both Jennifer!


Sending good wishes your way!

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Hi Jen,

 

I understand anxiety with taking one more opinion. My personal opinion is that Scleroderma and related disease are very complex and it is beyond capacity of one or two doctors to understand your daughter’s complete case. I would not hesitate to take multiple opinions and try to understand each doctor’s view points. Do not hesitate to ask tough questions and don’t be discouraged by any opinion. I always write down all my questions before I go for an appointment. I believe every doctor is looking for the best for the patient.

 

When my local doctors told me that I was too complex case for them and suggested me to go to UCSF in San Francisco, I was very impressed with their honesty.


Kind regards,

 

Kamlesh

 

 

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Where are you going in New York.?

If you are going to New York city, don't worry. I have been there many times and navigation is very easy.

I wouln't rent a car there, traffic is bad. You can walk, take taxies or just take the subway.

New York has also gotten a lot safer than what it used to be.

Enjoy your stay there. It is a very fun place.

If you have any question, just ask me.

 

Ani

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Hi Jennifer,

I am almost a pro at navigating NY! My daughter sees a specialist there too, but for chiari malformation not sclero, and I have been there many times for visits and surgery. Are you staying in the city? If so and you need a cab, the doorman at the hotel will get one for you. There is a ton to do there. Right in times square there are tons of stores that kids love. I'll Pm you withthe details!

 

I'll actually be there but at the beginning of March. Hope everything goes well.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Thanks for all of your good wishes and supportive messages. I am actually starting to look forward to this trip! We have a hotel on reservation right next to Madison Square Garden and Penn Station, and we bought tickets to see a new Broadway musical that my daughter can't wait to see (it is advertised heavily on a TV show for kids). I actually wish we could stay longer, but I'll be leaving my hubby and 4 year old behind. I've never been away for more than 2 days!! My daughter's 1st grade teacher told me today that she will be there that week, as will my sister's in-laws. This is a little peace of mind should something come up during the trip.

 

Thanks again,

Jennifer

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Jennifer,

 

Your plans sound terrific! It will help to have these distractions. Best of luck to you with the doctor's visits. Be sure to let us know how everything went once you are back.

 

xoxo emmie

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