12 07 2009

Here’s an article sent to me by the National Pancreas Foundation’s Newsletter about dealing with keeping your job when you have chronic pain: “Protecting Your Job While Coping With a Chronic Illness

The Hollywood Chronic Pain Support Group Logo

The Los Angeles  – Hollywood Chronic Pain Support Group will have it’s very first meeting AUGUST 2nd, (Sunday) at 6:30pm-9pm.  Join and RSVP here.

Today, after getting fed up with the utter lack of support groups for anyone in my situation with multiple autoimmune diseases OR chronic pain – I decided it’s about time I take some action.  My blog is called “Type A” with RA afterall.  And being a good Type A person – I feel it’s my duty.  Not that I have the energy to do this – but I need to reach out so badly that I’ve decided to spend my energies on an actual support group rather than continuing my never-ending search.  Also, I want a place where I can actually talk about forced sober living with pancreatitis, death and pancreatitis, what to eat with any autoimmune disease, what actually helps for lupus, death and lupus, and all kinds of things that really matter to me.  Beyond that, after my last almost meeting I had received quite a number of emails asking when the next meeting would be.  So below I have pasted the exact text that is at this link on the new meetup page.- but from this link you can sign-up to attend.  We’ll welcome any and all out of town guests.   If you run a blog, could you mention this meetup?  Well, I have my first client all week – so I better get on it.   – Love, Sasha xoxo

This is the welcome message I wrote:

Welcome to the Hollywood Chronic Pain Support Group!
Thanks so much for joining- You are truly not alone!

We look forward to having you at our next meeting. We are brand-spankin’ new group, but committed to getting together once a month to talk about our struggles, triumphs and lives.  Please RSVP for our next meeting.

I’m Sasha, your Group Organizer.  I almost wrote “reluctant group organizer” because I live with 4 diseases that often take me down for three days at a time.  I have Lupus, Rheumatoid Arthritis, Chronic Pancreatitis, and Diabetes Type 2.  I have enough energy to get the group started, but as we begin to meet I will ask each member to take on a very small role of participation.  This way it will be more doable and sustainable to meet each month – I know we all need it!

I was surprised or rather, shocked that there are so few support groups around the globe.  I have searched for quite some time to find a support group here in Los Angeles.  I’m guessing that you might have done the same.  The meetings will be structured so that we all get the very most out of them.  Everyone likes to have snacks and drinks, but if you’re like me – you don’t know what you’d say without some icebreakers.  For this reason we will have a guest speaker briefly give their personal story followed by individual sharing on a volunteer basis.

Please Note: I’ve currently closed the group mailing list until we have a member managing the list.  I can only do so much – –

1) In order to best serve the group we ask that caregivers do not attend with you – unless you are a caregiver and your mate is not going to be attending our group.

2) Each meeting we’ll pass the hat to donate what we can to the organizers.

3) If you’re seeking anonymity – we will honor your request.

4) We’ll all respect each others abilities.  Each of us may come to be temporarily too ill to fulfill our role/responsibilities.  We’ll all help out.

END ###


Grapes and Toothpaste

24 05 2008

I’m fighting insomnia while Jax is sound asleep. He had a hard job tonight trying to cheer me up. I tend to get severely depressed the first week after getting a new diagnosis plus I have the flu. Grapes and blueberries just don’t taste good when you’ve already brushed your teeth! It’s 4:30am and I’ve got insomnia..well, is it really insomnia if I’ve been sleeping all week? I definitely have had a crummy week.


“Hello Sasha, What peaked my interest is my fiance has RA, Chronic Pancreatitis and Interstitial Cystitis … all diagnosed in the past 9 months..” -Reader

“The commercial was on TV and there I was talking on the television about my bladder problems!!!” –True Quote by me–Sasha

I’ve also broken my cardinal rule and I’ve let this stuff really get to me this week. By “stuff” I mean the new diagnosis of hypothyroidism. Yet another very lovely autoimmune disease. So let’s see that makes: chronic pancreatitis (CP), rheumatoid arthritis (RA), interstitial cystitis (IC has been in total remission for the past 6 years), and now hypothyroidism. I’m a walking textbook of AI. I’m sure Jax wants to slap me into reality, but this week he’s been my cheerleader and trying to get me back on the right mental tracks. I can see he’s more distant though. I know he’s fed up with all of this. The trick for him is to stay engaged enough to deal with me – but distanced enough to protect himself. Being a caregiver can not be easy!!! I feel so sad that Jax is put in this position. it’s the last place I’d ever want him to be. I’d much rather be making mad, passionate love to each other in some swanky hotel in London…… on a tropical island with no rain.

I got an interesting letter from a reader that made me so sad:  “Hello Sasha, Just read your Info from Jan. on SSI benefits & RA. What peaked my interest is my fiance has RA, Chronic Pancreatitis and Interstitial Cystitis … all diagnosed in the past 9 months. I am sure she would like to hear more from you. She is having a hard time coping with all this. Any insight would be great. Sincerely, Michael”

The letter made me think about how many of us out there must be dealing with
this biggest BS from autoimmune diseases. I certainly didn’t wish these upon
myself.  {Click to read the rest of this blog on topics such as thyroid,
Being a do-er, Getting nothing accomplished, and IC Diet}.–CLICK HERE–> Read the rest of this entry »