Welcome to the

Syracuse Connect Group

Syracuse, New York
13 Members

Live Yes! Connect Groups offer local connections, education and empowerment. Adults living with arthritis from our local community come together for professional- and volunteer-led sessions on a variety of topics, as well as fun group activities.   

We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills and learn how to not just survive life with arthritis but to thrive. 

Upcoming Events

Mohawk Valley Community College 1101 Sherman Drive Utica, New York Get Directions
  • Sunday December 4th 2022
    12:00 AM
  • through
  • Sunday December 4th 2022
    12:00 AM
2022 Jingle Bell Run - Utica, NY

The Jingle Bell Run for Arthritis is among the nation's most incredible themed events. This fun and festive 5K race benefits the Arthritis Foundation's fight for the arthritis community - and helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections. Wear your favorite holiday outfit, tie jingle bells to your shoelaces and help us find a cure!

Facilitator(s)
Members
  • Event List
Arthritis Foundation Event
Mohawk Valley Community College 1101 Sherman Drive Utica, New York Get Directions
  • Sunday December 4th 2022 12:00 AM
  • through
  • Sunday December 4th 2022 12:00 AM
2022 Jingle Bell Run - Utica, NY

The Jingle Bell Run for Arthritis is among the nation's most incredible themed events. This fun and festive 5K race benefits the Arthritis Foundation's fight for the arthritis community - and helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections. Wear your favorite holiday outfit, tie jingle bells to your shoelaces and help us find a cure!

Facilitators [1]
Members [13]

You must log in to read and comment.

Connect Groups - Syracuse NY Adult

Comment

Join Group to Post!
Comments [11]
Toni  V
Toni V
March 6, 2022 - 1:07 PM

Hello everyone.  I wanted to take a moment to re-introduce myself.  I have been a little silent lately as I've been finishing up my masters in social work and with my internship added to the last 1.5 years it's been absolutely crazy, plus having a job that was doing everything in their power to make my life a living...well, anyway, I was able to graduate, change jobs, and now, tomorrow, I take my exam for my social work licensure (one test of two, the next one is in 3 years, as long as I pass this one).

My goal of this group is to bring people together (virtually) at least quarterly to talk about our situations, bring questions and insights.  I'm not a medical professional and would never claim to be one.  I may try to bring professionals to a meeting, if I can ever get one to respond to me (they are always so busy these days), but, even having discussions about how we are each dealing with our unique struggles, what we are going through in our lives, and providing support to each other, could be beneficial to each one of us in some way.

I am looking forward to at least some of you engaging in this discussion thread.  I read through your bios, so, tell me what you are looking for, what you've been doing other than cortisone shots, surgeries, playing with shelties, looking for future information perhaps because you've been told it's inevitable that you will have some form of arthritis (nice of them to tell you, eh?)

Also, if you know anyone that might be interested in this group, please let them know about it and have them join if they would like.  There are also events that you are welcome to attend virtually or in person on the main pages, even if I have not had a chance to list them, although I'm going to try to be more cognizant of this moving forward. :)

Thank you for taking the time to read through this.  I will be checking in weekly (on Mondays) until I can get a better system down.  But not likely tomorrow as tomorrow is my test.  (LOL).  That's why I'm writing today.  (I also talk alot).

Hope to hear from you soon!

Alexis B
Alexis B
October 5, 2021 - 5:19 PM

Good autumn afternoon.  I just joined and I'm interested in hearing what your experiences have been with the COVID vaccines.  Spoiler alert:  I received my first dose of the Moderna vaccine on Saturday and had a reaction to it.  Very similar to what some people experience from the second dose, but mine persisted a little longer -- more like 72 hours rather than 24.

I went through COVID in September, if that makes a difference.

I'd really like to hear others' firsthand experiences with both the first and second doses so I can do a little calibration and pre-planning for necessary downtimes and comfort items after my next dose.

Toni  V
Toni V
March 6, 2022 - 1:18 PM

Alexis, thank you for sharing, sorry I am just seeing this. For some reason, I am not getting notifications when people post comments.  I have submitted a request to get that looked into.  I am supposed to get an email alert.  Also, I'll be checking weekly moving forward although I know I checked not too long ago and did not see your comment. aRgh.  I took the {Pfizer vaccine (3) and my first dose made my arm feel like it was  bolted to my side for several days (Feb 2021), but other than that I was totally fine.  My 2nd dose (March 2021), my arm was a tiny bit sore?  My 3rd dose (booster) in Aug,(2021), I also got my flu shot in the same arm at the same time, and aside from some tenderness, no issues whatsoever. 

I've been fortunate, (KNOCK ON WOOD, PRAISE WHATEVER Y'ALL BELIEVE IN) I have NOT had Covid, but I've been exposed to it like 10 times now.  Once in My own house!  No idea how I am staying clear.  Maybe it's my technique of isolating anyone who looks like they have a germ and I darn near spray them with sanitizer and 'hold the cross' at them (basically act a bit paranoid is what I'm trying to say here) to back away quickly.  I kept my son upstairs and he had to call if he wanted food or to go to the bathroom.  had to mask up and glove up, then I'd go in after him, clean everything he might've touched.  I prepared his food, placed it on the stairs, called him to come get it.  :(paper and plastic silverware for easy disposal).  Place in trash bag that I would provide for him, all closed up.  panic a bit?  maybe, but I work with families in the field and my former employer was already forcing me to work in person before I was vaccinated, even knowing my status, and they didn't care, said I could quit and find another job, or do my job.  They refused to accommodate me at all.  (4.5 years with them).  

All in all, everyone is different and may have different reactions.  When you've had vaccines before, how did you react?

Do you feel that this was a little different?  Vastly different?  Or similar?  What did your doctor say when you told them about the type of reaction you had with the first dose?  It is important to note that we are not here in a professional capacity, so everything written is personal opinion, and personal situations.  I hope you find what you are looking for. :)

Toni  V
Toni V
August 24, 2021 - 4:36 PM

I am interested in learning more about everyone in the group.  Sometimes it is nice to just connect with others that deal with some of the things we might be dealing with.

My story: In January 2020, my hands suddenly started hurting like my hands were switched out when I was sleeping, with someone else's hands.  I thought it might be weather related, my tendonitis moving down, carpal tunnel? No idea.  I used my wrist braces (carpal) it did help some (the support), but overall, progressively worsened.  I went to the doctor.  She said she could not see swelling, but could feel it slightly.  At this point, I could not grasp, clench, straighten, flex and they were in so much pain, I would cry trying to do any of these things...especially if I 'forgot' for even a nano second and tried via reflex.

Xrays showed nothing.  Bloodwork told a different story.  I was referred to Ortho and Rheumatology. RA, Lupus, Connective Tissue...Sojerns, inconclusive.  More bloodwork. Ortho said, Oh, it's just carpal, here's new braces and sent me on my way, dismissing everything I said to him.  I did NOT go back.  RA doc, more listening.  I have seronegative RA and Sojern's (can't spell it)  My eyes are a nightmare.  my mouth is unreal. Dry/itchy, gross.It has taken since May 2020 for medications to finally begin helping.  A month ago?  I interlaced my fingers, flipped my hands over, and BRIDGED MY HANDS/CRACKING MY KNUCKLES.  I did this several times over a few days....then, that stopped. I must've forgotten some medications. Oh well. It felt great to have 'normal' hands for a couple of days.  They hurt again, but not nearly as much as they used to.  Now, they've added Fibromyalgia. yay. Apparently, this is not uncommon and I've probably had it for a long time, but no one ever put things together (RA and Fibro) until my hands went haywire.  (yay and yay). 

I've had my 3rd dose. The medications I take have suppressed my immune system and that leaves me open to illness significantly.  I checked with my doctors and they all agreed, GET THE 3RD DOSE.  i GOT THE 3RD DOSE ON THE 1ST DAY it was approved (1 week and 1 day ago).  It is my choice.  I am not a medical provider.  I am only sharing my story and my choices here.  

Everyone is on their own journey. :)

Would you like to share yours?


What is your story?

Toni  V
Toni V
June 25, 2021 - 7:34 PM

Hello everyone!  Glad to see some new faces in this group!  I would love to hear from you.  I was thinking of setting up another virtual group (zoom) where we can talk about our go to methods for working through our bad days, what we are able to do on our good days.  One hour meeting.  Let me know if anyone is interested.  

I also noticed that there are several events (virtual) listed on the Events tab.  If anyone is interested in any of those, feel free to click "Attend" for more information and to sign up!  This place is chock full of information and it is a safe place to express ourselves.  We are all in this together.  I am here to support all of you and began this group because I saw that there were no groups in the Central New York area.  Let's make this ours!  

I can only do a meeting on either Sunday afternoons or Saturday afternoons/evenings, so please let me know and I'll work to get one scheduled as soon as possible.  Thank you all

Toni  V
Toni V
May 17, 2021 - 9:49 PM

Hello everyone!  I am working on setting another virtual meet up for June.  I have Sunday afternoons currently available, but after the 18th, I will also have Saturdays available.

The Arthritis Foundation (Live Yes!) offers an all inclusive opportunity for you and your loved ones either personally dealing with some form of arthritis or helping a friend or family member.  Please register, once we get to that point of course, and let your friends/family know we are meeting, what's up and about this group.  I am trying to be more involved, but I am still trying to work the kinks out on my end. :)

Toni  V
Toni V
February 19, 2021 - 1:55 AM

Hi everyone!  Just checking in to see how everyone is doing these days!  We've had quite a bit of COLD lately.  I know that it's been negatively affecting me, I'd love to hear some conversations about how all of you are doing, how you are handling it, and if anyone has any tips or tricks for these harsh winters?  (This is my first!). 

I try to smile when it's hard.

Toni  V
Toni V
December 22, 2020 - 3:12 AM

If anyone has any tips and tricks that have worked for them, please feel free to share what has provided you with relief.  

Also, please continue to look for information on our next meeting.  Due to Covid, many of us are struggling financially.

We will be discussing this very topic.  

Informational Discussion on Arthritis Relief on a budget.  

What has been helpful for you.

Remember, all discussions are purely for informational Purposes* 

(However, if a professional is able to provide a presentation, and is able to provide professional, medical information...different story)

As soon as I am able to get a meeting set, I will post the event in this group. 

Stay tuned!

Toni  V
Toni V
December 18, 2020 - 10:13 PM

Friendly reminder that our first virtual meeting is tomorrow at 12:00 pm via Zoom.  If you haven't already registered, please feel free to do so.  Once you are registered, you will receive a zoom link via email.  This is what you will use to enter the meeting.  If you are using a laptop or iPad, etc, you can bypass the downloading of zoom and choose to connect via the web version.  (If you do not already have zoom).  Please let me know if you have any questions at all.  Thank you so much! :)

Monica C
Monica C
November 14, 2020 - 7:33 PM

Hi All,

Just moved to upstate NY. Really struggling right now. Have RA and Ankylosing Spondylitis. Hope you all are well:)

Toni  V
Toni V
March 6, 2022 - 1:21 PM

Hi, Monica, that sounds like you are dealing with a lot.  Sorry I am just seeing this.  My life kind of got turned upside down and while I have commented in the discussions I did not see your post.  

I am working toward getting set back up for virtual meetings and hope you are able to attend.  Please stay tuned! :)

Toni  V
Toni V
February 19, 2021 - 2:00 AM

Hi Monica!  Welcome to CNY, where the cold just gets colder, and the snow just piles higher!  Although, this has been a really strange winter, we are really low on our snow totals!  

Toni  V
Toni V
September 5, 2020 - 11:45 PM

What type of Arthritis do you have? I have both Rheumatoid and Osteoarthritis. The Rheumatoid was just diagnosed this year and has rocked my world substantially. What about you?

Toni  V
Toni V
September 4, 2020 - 8:24 PM

Hi everyone! My name is Toni and I am the facilitator for the Syracuse Live Yes! Arthritis Group. I would like to gather your input on which day works best for you to meet virtually (via zoom). I have Saturday or Sunday available right now. Time is flexible. Please let me know so that I can coordinate a meeting. Thank you and I look forward to meet all of you!

I Want to Contribute
I Need Help
  • Donate

    Every gift to the Arthritis Foundation will help people with arthritis across the U.S. live their best life.

  • Volunteer

    Join us and become a Champion of Yes. There are many volunteer opportunities available.

  • Live Yes! INSIGHTS

    Take part to be among those changing lives today and changing the future of arthritis.

  • Partner

    Proud Partners of the Arthritis Foundation make an annual commitment to directly support the Foundation’s mission.

Donate


Ways to Give

Every gift to the Arthritis Foundation will help people with arthritis across the U.S. live their best life. Whether it is supporting cutting-edge research, 24/7 access to one-on-one support, resources and tools for daily living, and more, your gift will be life-changing.

Make a Donation

Help millions of people live with less pain and fund groundbreaking research to discover a cure for this devastating disease. Please, make your urgently-needed donation to the Arthritis Foundation now!

Become a Member

Become an Arthritis Foundation member today for just $20 and you'll receive access to helpful tools..... and more. 

Make a Honor or Memorial Gift

Honor a loved one with a meaningful donation to the Arthritis Foundation. We'll send a handwritten card to the honoree or their family notifying them of your thoughtful gift.

Gift Planning

I want information on ways to remember the AF in my will, trust or other financial planning vehicles.
 

Volunteer


Volunteer Opportunities

The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community. We can only achieve these goals with your help. Strong, outspoken and engaged volunteers will help us conquer arthritis. By getting involved, you become a leader in our organization and help make a difference in the lives of millions. Join us and become a Champion of Yes.

Become a Volunteer

More About Volunteering

Live Yes! INSIGHTS


Give Just 10 Minutes.

Tell us what matters most to you. Change the future of arthritis.

By taking part in the Live Yes! INSIGHTS assessment, you’ll be among those changing lives today and changing the future of arthritis, for yourself and for 54 million others. And all it takes is just 10 minutes.

Your shared experiences will help:

- Lead to more effective treatments and outcomes
- Develop programs to meet the needs of you and your community
- Shape a powerful agenda that fights for you

Now is the time to make your voice count, for yourself and the entire arthritis community. 

Currently this program is for the adult arthritis community.  Since the needs of the juvenile arthritis (JA) community are unique, we are currently working with experts to develop a customized experience for JA families. 

How are you changing the future?

By sharing your experience, you’re showing decision-makers the realities of living with arthritis, paving the way for change. You’re helping break down barriers to care, inform research and create resources that make a difference in people’s lives, including your own.

Get Started

Partner


Meet Our Partners

As a partner, you will help the Arthritis Foundation provide life-changing resources, science, advocacy and community connections for people with arthritis, the nations leading cause of disability. Join us today and help lead the way as a Champion of Yes.

Trailblazer

Our Trailblazers are committed partners ready to lead the way, take action and fight for everyday victories. They contribute $2,000,000 to $2,749,000

Visionary

Our Visionary partners help us plan for a future that includes a cure for arthritis. These inspired and inventive champions have contributed $1,500,00 to $1,999,999.

Pioneer

Our Pioneers are always ready to explore and find new weapons in the fight against arthritis. They contribute $1,000,000 to $1,499,999.

Pacesetter

Our Pacesetters ensure that we can chart the course for a cure for those who live with arthritis. They contribute $500,000 to $999,000.

Signature

Our Signature partners make their mark by helping us identify new and meaningful resources for people with arthritis. They contribute $250,000 to $499,999.

Supporting

Our Supporting partners are active champions who provide encouragement and assistance to the arthritis community. They contribute $100,000 to $249,999.