VAN SERVICE

9 03 2010

I am trying out this new technology… Updating my blog from my mobile phone. If it works well then I might be able to continue doing my blog. A few months back I broke my laptop computer and so had to stop doing the blog for awhile.

So… Van service…I haven’t been allowed to drive since December. The reason: I went for a sleep doctor consultation and the Dr freaked out about my questionnaire. What a prick! I simply wanted him to know my insomnia was fierce. It hadn’t occurred to me that the Dr would be able to ask the dmv to suspend my license – in the same day. No test as of this date. The Dr didn’t even care to help. He only cared to make it a massive hardship on me. It was obvious he thought I was a druggie based on my list of meds.

It’s a long process to get my license back. I’ve been very good about not driving at all. I’m on a waiting list for a new Dr’s sleep study. I want to solve this horrible insomnia.

My new list of meds is horrific. It includes methadone! (the usual med I take is levorphenol but the manufacturer is behind so I got prescribed the closest relative. The list is very long including enbrel for RA, methotrexate for Lupus/RA. And even percoset for chronic pancreatitis. There’s synthroid and metformin and so many others I’m on.. And being put back on wellbutrin. No sure I want to be on a weight gainer so may not take this one.

Point is that I found out LA has a van service you can take if they deem you disabled. I feel very lucky I passed that test. I am officially disabled. The van is about $2.25 per way. Not bad at all for door to door service!

So if you have lots of med issues like me..you might want to check out the van service in your city.

Checking out. Goodnight.
Xoxo sasha

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LA/Hollywd 11/14 Support Group

27 10 2009

Click on link to sign up:
http://www.meetup.com/The-Hollywood-Chronic-Pain-Support-Group/

The Los Angeles/Hollywood Chronic Pain Support Group

Meet someone JUST LIKE YOU.
WHEN: Saturday, November 14th, 2009 from 11am-1pm.

WHERE: Meeting place is 2 Blocks from Sunset and Vine.
Come make new friends!

The Los Angeles / Hollywood Chronic Pain Support Group was established to get together once a month to talk intimately about life, love, and living with Chronic Pain. For us, it is important to have a safe monthly gathering place for anyone suffering from chronic pain. We share our triumphs, hurdles and pain.

We encourage attendees to share about how they soothe themselves during flare-ups, how they manage work and play, and how they juggle the body and mind in the hopes that we each can find new ways of getting out of pain for longer periods of time. Our main purpose of meeting is simply to have a place to discuss the REAL issues we each face.

 

In an intimate setting we’ll share our experience, strength, and hope with one another. We’ll discuss the hurdles we really face of living with chronic pain. The frightening reality of intimacy, the reality of relationships, managing a job or boss, and positive ways that we’ve found to cut down on our pain. The group’s focus is to discuss issues we face living with chronic pain for any reason – some my have Lupus, others may have had an injury. I have Lupus, Rheumatoid Arthritis, Chronic Pancreatitis, and Diabetes Type 2.

Hi! I’m Sasha, and I started this meetup because I’ve been wanting to be a part of chronic pain support group for a very long time. I seem to always miss the meetings in my area or the meeting seems to touch on items I’m not really interested in–so I’ve decided to start one.

The meetings are currently being held at in an artist loft’s building in Hollywood. The meeting format is in an intimate, safe environment,





CHRONIC PAIN SUPPORT GROUP

28 09 2009

We’re having our next chronic pain support group on October 10th, 2009.  All are welcome to attend.  All you need to do is sign up at our meet-up groups page and then RSVP for the event.  This time we’re doing it on a Saturday morning at 11am so that more people can attend.  We hope to see you there!   – it’s a brunch potluck so bring what you like.  visit our meet-up website: http://tinyurl.com/hcpsg

OCTOBER 10th – Saturday at 11am.  Support Group meeting located in Hollywood.





ASK MY BED

28 09 2009

I’ve been feeling much more positive lately.  I’ve been getting great help for my severe depression through one of the inpatient hospital programs here in Los Angeles.  If I wasn’t in LA I honestly don’t feel I would be getting as much help.  My whole life fell to pieces in September of 2008.  My illnesses began to overpower my world.  I lost the ability to stay on top of everything.

RA still kicks my arse and my joints hate me when I forget to take my enbrel.   I even have reminders in my phone so that I don’t forget.  Pancreatitis is getting a little better because I’ve been making my lunch and taking it to the hospital program.  Now what I really need is time to look for a job.  I hired two people to help me with my taxes.  I can’t apply for disability without the past two years of them… and I am so behind – it’s pathetic.  I’m not sure how my whole life fell apart, but I think that I got so overwhelmed with everything that I couldn’t keep up anymore.  It was an evil combination of anxiety and depression.  Apparently, they both hit frequently together.  I fell behind on every single thing. I lost my self-esteem, my confidence, and any good thoughts I might have had.

I’m starting to put it all (my life and office) back together.  I’ve got some interns on top of my helpers.  In order to deal with my illnesses AND my office, I am forcing myself to nap halfway through the day.  I can’t keep up like they can.  I used to be able to work around the clock, but those days are gone.  I am starting to chip away at my newly diagnosed Diabetes type 2.  There are so many food limitations.  I am hoping that by easing one disease down that perhaps I will help out the RA or Lupus at the same time.

I’ve really enjoyed my reader letters lately.  Thank you so much for thinking of me and sending such nice messages.  I hope to return the favor someday by writing nice things back.

I’ve been thinking a lot lately about writing a book about my journey though these autoimmune diseases, but i’m not yet sure of the best angle.  Does anyone out there have suggestions of the types of books you would read on the topic?

My hand is in too much pain to keep typing.  Love you all, Sasha xoxo





September Support Group

7 08 2009

http://www.meetup.com/The-Hollywood-Chronic-Pain-Support-Group/

 

The Los Angeles/Hollywood Chronic Pain Support Group

September 13th – 6:30-9pm

Come make new friends!.

Meeting place is 2 Blocks from Sunset and Vine.

 

In an intimate setting we’ll share our experience, strength, and hope with one another. We’ll discuss the hurdles we really face of living with chronic pain. The frightening reality of intimacy, the reality of relationships, managing a job or boss, and positive ways that we’ve found to cut down on our pain. The group’s focus is to discuss issues we face living with chronic pain for any reason – some my have Lupus, others may have had an injury. I have Lupus, Rheumatoid Arthritis, Chronic Pancreatitis, and Diabetes Type 2.

 

Hi! I’m Sasha, and I started this meetup because I’ve been wanting to be a part of chronic pain support group for a very long time. I seem to always miss the meetings in my area or the meeting seems to touch on items I’m not really interested in–so I’ve decided to start one.

 

The meetings are currently being held at in an artist loft’s building in Hollywood. The meeting format is in an intimate, safe environment, but will be structured with time allotted for a meeting speaker who will share their personal story for 15 minutes, then we’ll open it up for anyone wanting to sharing their good or hard times. Finally, we’ll have snacks/drinks while getting to know one another better.

 

UPCOMING MEETING: We ask anyone well enough to bring something to eat. Participation will be as much or as little as you are capable of doing.

 

Please RSVP and I’ll send you some options for food/drinks to bring, parking and door instructions.





CRASH DOWN

31 07 2009

So moving right along with my new style of writing here on my blog  – more personal…more details about my real life and how it goes living with chronic pain.

Yesterday marked the end of the 2nd week of the program I’ve been going to.  Essentially, it’s a psyc ward – but called partial hospitalization/mental health services.  I am not crazy or off my rocker (uh – at east I hope not) but my life had spun completely out of control because I did not know how to deal with living with so many health issues.  There are other reasons including the terror I experienced as a kid (literally terror), but the primary background is this: Jax split up with me one year ago almost.  I was depressed of course .  I had been my primary care taker when things were truly awful, but he had a really tough time transitioning out of that role.  Our relationship crashed as a result of both of our issues.  Then at Christmastime my family couldn’t deal with the reality of my illnesses at all.  They could not se me as a sick person – they couldn’t bear the site of me.  My father, whom I love dearly, has been the worst of the lot.  He is so out of touch with his emotions (and mine) that he was getting irate with me personally as if i could turn my diseases off and just wouldn’t stop being stubborn.  Eventually we had an all out family brawl and I got sent away (Code words for I got cussed out and kicked out by my brother who is totally in denial about my illnesses and he’d rather send me away then deal with it).  Before I spent New ears alone in a hotel room in the Washington DC area I fell to my lowest point where I planned out my death.  I was on the way to the car rental place when Jax called me back.  He talked me off the cliff (not literally, but sorta literally) and I checked into the hotel for a few days.  My brother and Po werent able to deal with me and continued to blame me personally for all of the troubles – it is all my fault.  I brought this on…and that sort of thing.

My therapist told me I had had a mental breakdown and I don’t disagree this time.  It felt cataclismic.  My world crumbled.  The few people on this earth i thought I could always count on had left me on New Years Eve to be alone.  A month later I flew to my folk’s home to confront my dad about the events, but all he could say is how sad he is about my health problems and that I ruined Christmas.

As the months passed I grew closer and closer to the edge again.  Nothing could shake me off the deep depression.  I’ve lost everything due to this disease (chronic pancreatitis) and that disease (Lupus, RA).  Jobs, friends, loads of money, friends, acquaintances, people, strangers, and eventually there was almost no one left.  You must be thinking – WoW!  She must’ve been a real bitch when she’s in pain – but it isn’t true.  They left because they didn’t know what to say, didn’t know how to handle any of it.

Finally, I started cutting myself again like I had when i was 14 years old. Jax saved the day.  He moved an apartment away.  He’s so close yet so far away. I never wanted him to break up with me.  I’m not over it because I’m in love with him and the only thing that stood between us was pancreatitis, lupus, RA, and diabetes.  But eventually that became many things.  My self-esteem was shot (after prednisone adding 50 pounds) and I was not myself.

I know I have to take care of myself first and foremost right now.  I know I can’t be in a relationship right now.  I know it’s baby steps… but I still am in love with Jax.  It’s been 10 months and I haven’t moved on because I believe we have a future together.  Not right now of course… but in the future once I have my life back together and once I am back on track with my dreams and goals.  Once I am back t being me again.  Of course I’ll be different by then, but I see Jax a lot and it always feels right.  So Im focusing on Number 1 right now -me- and it’s not easy.

Love, Sasha xoxoxo





MEETUP LOS ANGELES

20 07 2009

Attention fellow bloggers, websites, admins, etc.  Please post anywhere possible.

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.

The Los Angeles / Hollywood Chronic Pain Support Group was established to get together once a month to talk intimately about life, love, and living with Chronic Pain.  It’s important to have a safe monthly gathering place for anyone suffering from chronic pain. With a specific focus on those living with a chronic disease such as one or more automimmune diseases, we share our triumphs, hurdles and pain, but we also offer resources such as alternate medicine pathways and non-Rx treatments to alleviate pain. The meetings are open to anyone living in/with chronic pain. For more information and to sign up and RSVP:  http://www.meetup.com/the-hollywood-chronic-pain-support-group or for those that need a shorter url: http://www.tinyurl.com/hcpsg