Tuesday, January 26, 2010

Arthritis Support Group

The NY arthritis support group met again last week and welcomed 2 new members. Topics of discussion included medicines, doctors and comfortable shoes...yes Coach was a popular suggestion! We all understand each others' pain, but also know that we need to keep things upbeat and positive. It was a good night.

Our next meeting is on March 10 at Cibo 2nd Ave between 42nd and 43rd.
Here's one of my recent emails from a 'member'.

Thank you soooo much for the email reply. I feel much better. You are amazing. Its so frustrating to have so many things wrong and not really know a cause still. But u helped me a lot. I will do all that you said. knew u could help. Feel good and thank u!

-----Original Message-----
From: Karen Ager
Sent: 10/1/2009 7:51:39 AM
Subject: Re: Support needed from you because I bet you'll understand

Hi ,,,,,,,
I couldnt sleep so I checked my email. I understand all those scary feelings, frustations , anger and loneliness .
There are a couple of things I can suggest until say Saturday when we could chat at Tudor city park.

1. Go to www.karenandarthritis.com
There's a lot of info. For disease management there including a 12 step program. You are in a grieving process right now. It's okay to be angry. The website will answer most of your questions

2. Half of the battle will be about controlling negative thoughts.

3. Rest is soooooo important. Some days before I was married I'd lie in bed at Tudor city for the whole weekend

4. Fish oil take 6 capsules a day. Your body needs anti oxidants

5. Take men out of the equation for now . Too much pressure or fiddle around online while you're resting just with an attitude of fun

6. Take some time in the day to get some space and consciousness about your thoughts. Look at the leaves of the trees the water etc. Be in the moment without a fear, if only for a minute.

7. Buy the book Always Looking Up by Michael J Fox

Go to my website it will help. There's lots of tips.

Till later know that you are special and somehow your courage will make you stronger and a better person.

K x

Sent from my iPhoney

On Sep 30, 2009, at 11:51 PM, .........wrote:

Hi Karen-

How are you feeling? Well I hope.
Okay so now I just want to know if it is okay to be emailing you about the fact that I am really upset and frustrated with my health? Is it? ( I hope because there are very few people who understand what it is like to live with chronic pain and meds and drs appts). If so.. read on. If not, just press delete!!

I know I mentioned to you that I have really bad arthritis everywhere even my tmj (jaw) and there has been a pattern of drs telling me it is probably rheumatoid arthritis. Also because I have things wrong with so many dif systems in my body all my specialists have been saying that I need a rheumatologist to find the connection among all the things that are not functioning well in my body. Not like I enjoy going to drs and even though I was sick of drs by the time rheumatology was mentioned I figured I should listen and go. Plus I wanted to feel better and I figured a rheumatologist could help with that. I was told I have RA by 3 dif drs. However they did not do the bloodwork. Well some tests and RH factor was only 8 or 9 but they said I could still have RA.

I am soo mad and don't feel like there are many people (lucky for them) that can understand how lonely it can be to feel awful but not have control over feeling better.
How do you handle fear of a diagnosis that will be with you for life? 2- I feel lonely because no one knows how bad my body feels 3- I feel angry at the drs that are not thorough. 4- I am in a lot of physical pain and that makes me mad and it is interfering greatly with my quality of life, my ability to find a husband and my willingness to socialize.

I am not nornally like this. I keep trying to think positive, stay positive, but it is getting harder and harder because I do not feel physically well yet (but I hope to some day). I like to make people happy with my presence, not bring them down with my health ailments , but how can I? The last time I felt this bad, I googled arthritis support groups and found yours and found solace in knowing I would soon get to meet people in similar sitiations and also just meet new people that understand but that can also possibly be nice to socialize with and could help me learn to live a fulll life even with arthritis. Do you ever feel like you want to be very selective about who you hang out with, especially on the bad days? Maybe it is a bit dif because you are married? How did you get past the health discomforts and actually get out and date? I feel like I can never present my best self. I don't want to be touched because I hurt and I hate the way my body looks and feels. And I really like to be happy and positive and fun. I really do but I am having a very hard time right now-- because of the pain and swelling.

I know I gave you such an earful but I am just wondering if you know anything I can do to get past this point and get back to living a fun, comfortable life. And I needed to give you this background so you could get a real sense of the conflict I have-- the horrible pain so I don't want to move or be around people but the burning desire to get out in the world and have fun and socialize.

Any thoughts??

Email me. I hope it is ok that I emailed you. I won't do it often, I swear but I just felt like I needed to now because your presence and spirit and your group'smeetings have helped me.