MEETUP LOS ANGELES

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 – –

SOME BASIC AGREEMENTS:
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 ###

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REBUILDING YOUR LIFE

5 07 2009
Hi All!  I am bright and cheery today (which if you’ve read ANY of my posts in the last 6 months you’ll know how very rare this is indeed)! It’s the fourth of July, but certainly not what I’m going to write about.  I’m not going to write about Iran or politics or religion.   I’m not even going to write about spirituality or marijuana use for pain – nope – not me.  I’m using today’s blog post to talk about suiting up and getting your game on – – Get out there and play life — Damn It!  

As any and all of you out there with a chronic pain issue OR with loved one in that situation know well our lives all get eaten away slowly but surely by this monster or demon called disease.  Whether it’s a known disease or not – it’s ripping the life force directly out of us – ALL OF US.  I definitely am counting the caretakers in this big bowl also because chronic pain chips away at our tolerance for other things and we start to see life very differently than our peers.  Before you know it 5 years has gone by and what do we have  to show for it other than more pain or worry wrinkles?  Well… I wish i could let you whine and moan about how life is being ripped out from under you BUT that’s not what this post is about – it’s about the exact opposite.  

HOW TO REBUILD YOUR LIFE – IN OR OUT OF PAIN (no matter how excruciating)

I have finally come to understand a few things about dealing with my illness and myself.  Whether you have RA, Lupus, Chronic Pancreatitis and Diabetes ( i have all of those) or some other set of diseases, these are some things i’ve recently come to realize.  I can’t continue to watch my life slip away like this.  Even though I’ve become highly functioning again (nowhere near where I once was) I need to keep a few rules in mind.  I so badly wish i did this the entire time I was so ill rather than waiting 6 years into it.  What a huge mistake.  Now, I’m having to pretend I just moved to Los Angeles in order to cope with the loneliness better.   FIRST RULE:  I MUST CALL As much as I don’t want to call a single soul, I must at least TRY.  I promise to call at least 3 phone #’s on my call list.  This goes as a rule EVEN if I’m in bed the whole day unable to get up (there are plenty of those).  This should be split up between doctors, insurance company (or business-type call), and one friend.  IF I had done this all along I would not have to be in so much agony over the pathetic stacks of paperwork I still have left to complete.  SECOND RULE: “I’M TOO SICK” IS NO LONGER A VALID EXCUSE.  This means that I must find a way to do the bare minimum of 15-20 minutes of email every day.  It’s horrific to wake up one day and realize your credibility’s in question because you never reply to anyone.  If I need to find a way to hire a helper for ten hours a week – then I need to find a way to do that.  If you pay them $10/hour (more than minimum wage) that’s only $100 a week!  I will find a way to do this from now on.  My life is worth enough to not give up on it.  THIRD RULE: My caretaker is not “my bitch”.  I should try to rely on myself for every single thing possible.  I should evaluate ALL things my caretaker does for me and try my very best to take over some of the responsibilities again myself.   The BIGGEST mistake I made when Jax still lived with me is that I relied on him to wake me up, to remind me to take my medicine, and to remind me to get off the computer (STOP working) and eat.  I was a diehard workaholic because it helped me NOT think about the pain.  Jax never resented me for these, but it was all of this small stuff that ate away at HIS independence.  He needed to be free of me when he was out of the house and in it honestly..but I thought that if I gave him little things to help me with that it was beneficial in some way.  IT WASN’T.  Jax was and IS amazing  – but I’m an adult and even if I’m really sick I can wake myself up to an alarm clock.  Jax had enough to worry about.  

There are so many more items like these.  Perhaps if I’m in the mood down the line I’ll continue to write more of these.  Essentially, I let myself kick and scream a little too much (in my own sound opinion) and therefore I lost so many “friends” in the process.  I kept thinking that I simply didn’t have the energy for it.  And perhaps I only think it’s possible now that I’m functioning again…but I do think I could’ve made more effort even FROM bed instead of totally tuning out.  Now, I’m having to try so much harder to make new friends because I rarely have enough stamina to work a day AND go out socially that evening….  I know all of this is really easy to say I’ll do – and it’s an entirely different matter to actually  do it.  

BUT, simply put I wish I had my old life back.

I was very successful, had a full house of friends, had a “life” outside my back porch and I was full of energy and life – some call it zest. I can recall the zest from time to time but nothing like I used to do.  Now it takes energy to just get my work done each day – much less have the energy to go out or see a movie.  I lost so many “friends” that now loneliness greets me like an old blanket.  It’s awful.

More chipper days to come (so they say).
love, Sasha xoxoxo





PAIN’S HEAVY PRICE

19 04 2009

SEVERE DEPRESSION-THE ALONE-NESS

It’s not the sort of thing that I like to admit is happening. It’s not the sort of thing anyone would want to admit.  It’s definitely not party conversation.  2 days ago my doctor talked to me about possibly putting me in the hospital  – not the regular hospital – but a facility…As in getting committed.  All I needed to say was one extra sentence or actually word- and I would be there right now.  All I needed to say was the truth…”Have you thought of harming yourself or others?”  How do you answer that question when I’ve even looked up possible locations to drive a car top speed into a concrete wall?  How do you answer that when you’ not only thought about it, but even gotten to the stage of trying to research if the airbags popping out would prevent me from being dead.       I don’t want to be dead, nor would i ever do this, but I’ve thought about it.

Pain comes with a heavy price.  Most people don’t understand long-term pain.  they always say stuff like “get better soon” or “i hope you’ll be feeling better the next time I see you” or they go on and on about their healer or raw foodie friend that cured their lupus completely simply by eating a raw food diet.  They seem to think I want to have a chronic disease.  They seem to think that it’s in my mind   – and that this is the reason for my physical pain.

The toll is much larger than just physical pain.  It’s much larger than absolute alienation from friends and family.  It’s alone-ness that I never could have imagined.    All of the hours I spend pretending to be normal are wasted hours.  All of the hours back and forth to the doctor is time rolled up and tossed away.  Most of all it’s the alone-ness I am left with.  Some of my friends started this journey with me and only last a week.  Others lasted several years, but now that I’m going into my 7th year of chronic pain I feel as if everyone has left.  Everyone is over it.  My doctor’s are there  – and that might be the only thing keeping me from completely breaking down.  Two of my doctors stepped out of their uniforms this week (figuratively speaking) and hugged me, grabbed my hand, felt my real pain from all of this.  It was the most human thing I’ve seen anyone do in such a long time.  it did change my mind about wanting to stay here.  they both urged me to remember that this depression is temporary.  It doesn’t feel temporary.  I feel like I’ve been here for a very long time.

I was thinking about the steps that led to my big crash into ultra-severe depression.  The main one was over the holiday when my own family couldn’t take it.  My own family left me.  We talk on the phone now, but I know when it gets really hot that they can’t handle it- and i’m the first to go.  My dad couldn’t take me being in pain and so instead of having sympathy for me he threw me out. , all because I had to work over the holiday while he felt I should be resting.  My brother disowned me because I was in so much pain after playing soccer with his soon and I complained about them having nothing I could eat for breakfast.  I thought a lot of people got grumpy at breakfast-but with my physical pain on top of it I’m a “complainer”.  And no one comes to my defense anymore.

I’m also now open game for rude and hideous comments.  An acquaintance I know took me to a concert last week but spent the whole time telling me how fat i’ve become.  I’m not actually fat at all in any city outside of Los Angeles.  I’m average after the prednisone, but not fat.  She went on ad on about how she would kill herself if she got as fat as me.  Naturally i will not ever spend another second with her, but the damage was already done.

The part that is still the hardest is that Jax left.  I’m getting over it – I can feel that – but I’m still not over it.  I don’t know if I ever will be.  Right now it doesn’t feel possible.  Mainly because it doesnt feel possible that anyone will ever like me again.  I am simply exhausted and can’t think of good things right now.  Facebook has brought some good old friends into my life which does give me hope that at least I might have friends in my future, but right now the ones I have in LA can’t be bothered to spend any time with me.  LA people tend to be overly selfish.  (Not the ones born and bred here btw – just the transplants).

I’m ready for good things to come into my life.  I am open to all good things coming into my life.  I invite all good things to come into my life.  In the moment my depression is in the passenger seat.  I just want to go to sleep on the couch again – I’m not into sleeping on the bed.  it has too many memories.

Love Sasha xoxo





DATING – BACK IN THE SADDLE

28 02 2009

Brief background for any new readers: Info about me (sasha) and my life is in the “About” page so you can catch up on me there.  Feel free to comment on your life and your issues.  The readers of this blog are creating a community and many have their own blogs that I have created links to on the right.  Check them out and feel free to tell me your favorite ones.  I thought we’d do a little top 5 blog links contest for the next 30 days.

Jax left around 6 months ago, but lives an apartment away.  He’s not willing to say we are never going to be together again.  I’ve tried in numerous ways to move on but over the next 6 weeks I am forcing the issue by having a JAX BLACK OUT starting this Monday.  (Why this Monday?   –  because he helps me do my laundry and I’m not mentally prepared to do that on my own yet.)  Also, if there’s an emergency like there was last time I tried this a few months back then we are allowed to communicate temporarily.

The great thing about dating with a chronic disease is that this issue applies to everyone with a chronic illness, not just a specific type of illness.  Many of us have been through the true love in our life that has left after 4-5 years.  That’s certainly my situation w/ Jax.  So in an effort to move on I signed up with a few online sites and started forcing myself to go out to events again.  At first I pushed it too hard.  I was going out so much that I ended up crashing back against a 3-4 month wall (that’s why I was offline for quite some time).  Now I think I have a better balance and am saying home more than I want, but at least nit making myself worse.  I also asked the advice of friends about whether to mention my illness straight away or to keep quiet.

(Read on for more on DATING w/ a CHRONIC DISEASE, Dating Print-Outs, and Bad Kissers need not Apply)—> Read the rest of this entry »





1 Year Off Prednisone

25 02 2009

Hello All – Sasha here!  To my loyal readers:  I’m sorry I left the online world for so long – but I m sure that anyone reading this could relate.  I felt like I had to crawl back inside my little cave in my mind rather than expressing it out loud or through words.  I needed to sort it out uptairs in my head first.  A ton has happened since I was last really online.

Briefly this is what has happened:  Jax & I are still split up (and yes i am still crying about it 6 months later).  He still lives one apartment away (joy oh joy) no – actually it is comforting but has mae it nearly impossible to move on.  Jax and I still spend time together here and there and I’ve tried several times to do Jax blackouts for 6 weeks at a time, but we’ve never made it past 1 week (on his side also).  But I have begun internet dating and I’ll write all about that in my next post.  It’s been a tough turn of events since I last checked in.  Last I recall I had just left the Emergency Room where they treated me like I am a drug addict.  I have since found a lawyer who is determining if I have a good case against the hospital.

But the biggest changes have been on the diagnosis front and on the body/mind front.  I’ve had CP for almost 7 years now and RA that was diagnosed in late 2007.  Initially, I took prednisone for it and gained 60 pounds in 5 months. Then I was put on a high dose of Methotrexate that poisoned my liver.  I got off that and was then only on Enbrel (I far prefer the regular needle rather than the sure-click).  My mom has many of the health issues I have was diagnosed with RA in October 08 full blown Lupus in November.  Many doctors will say that it is almost impossible to have both diseases.  They say that you usually don’t see bone breakdown in Lupus patients.  But – my family has never turned up normal in any health matter so it’s not so surprising.  I fired my 2nd Rheumatologist and onto the 3rd  – this time at Cedars-Sinai.  The new one is great in some ways, but less thorough in others  – but it will do fine for now.  This month (February 2009) she believes that I have many of the tell-tale signs of Lupus, but it is not yet showing up in my bloodwork.  In other words, she feels pretty confident that I need to go back on Methotrexate to lessen the possible Lupus issues.  She feels it is a large possibility that my different diseases will eventually fall under the header of Lupus.  So now I am back on a regular dose of Methotrexate.

Beyond these updates I will get more into what’s been going on in my mind over the next few weeks.  I will say that my depression blew up to a horrfic degree and I got put on Wellbutrin along with Cymbalta.  The depression got very out of control and I had begun having vivid visions of how I could remove myself from Earth.  I have finally snapped out of that zone and am back on the ground….maybe not solid but certainly back on the ground.

Some things I’m doing to climb out of depression: (Read on to find out!  Also read on for the Prednisone Challenge – What I’m doing to climb out of that blah also) —-> Read the rest of this entry »





HITTING BOTTOM

25 10 2008

If I was allowed to drink then I would be plastered right now.  TOTALLY plastered.  I know… drinking doesn’t solve anything – and i can’t touch even a drop of alcohol with chronic pancreatitis.  Is drinking alcohol also bad for RA?  I never even asked the Dr because I knew I couldn’t drink anyhow.  When I was still allowed to drink i was never into soft stuff like wine.  I was in it to get drunk – I know I sound completely immature right now.  And that’s okay with me.   I’m in a truly dark and horrible place.  My RA is okay and I did see the new Rheum Dr. (known as the rheumie) and she was GREAT!  I really like this doctor.  She is at Cedars-Sinai in Los Angeles.  She didn’t do all of the anal testing which is not always a great thing, but I went in on a mission to get a new scrip for Enbrel and that’s what I got.  I’m now going to take 50mg with that “pen” rather than the 25mg twice a week with a proper needle that you jab into yourself like an old RN pro.
Why, you might be wondering am I in such a bad place?  I know this sounds retarded – i really do but this is the problem which has nothing to do with RA.  This is all about relationship issues stemming from being sick for 3 years.  BUT I’m not sick anymore.  I’m now in the “management” phase… but my whole life just fell apart in one fell swoop.

Essentially 5 weeks ago Jax broke up with me.  He said it was medical reasons.  It really wasn’t but it was a good excuse.  The real reasons?  5 year itch?  5 year flight from committment?  Not sure.  i hadn’t even realized he fell out of love with me.   Now, I had always been super independent before Jax came along.  I even liked being single most of the time.  I painted a lot and had a good network of friends.  Now, after 3 years of being sick my friends can be counted on  one hand.  Of those only 2 can be counted in my hometown.  The others live back in my college town. I had multiple clients running at once.  I had a company with employees, an awesome office, an amazing apartment, and so on.  I was my own self 100%.  i didn’t need to rely on anyone, but I leaned on my friends as they leaned on me because that’s one reason friends stay so close.

Now, after battling for my life while Jax and I lived together he just got “over it”.  He was super supportive throughout the whole ordeal, but now that I am finally feeling better… he breaks up.  Problem #1 is that many of my “friends” left when I got sick.  I know, you must be saying – then they weren’t real friends.  And I suppose they weren’t, but I really need a support team right now and I only have 2 people here to lean on.  Everyone else left when they realized I couldn’t hang out.  They took it personally no matter how much I assured them it was my diseases preventing me from going out.  And it really was.  i couldn’t be superwoman in my free time.  it had taken all I had just to get through a day of work. Problem #2 – i am still beyond upset that Jax left.  I’ve done a really good job of keeping my mouth shut in public, but once I get home I just crumble.  I know I am not the first person to go through a break-up, but this one hurts so bad.  I was totally in love with Jax.  I thought we were a great team since we went through so much together.  I hear that is common – that the couple splits once the sick person is much better.

Now I am simply a total mess.  I can’t stop crying.  I really can’t.  I’m supposed to be a very strong woman.  All my friends (I actually do have a number of friends but they live in different cities) see me as that.  I am known as strong, tough, capable of kicking ass and taking names.  But now… now I am just a lump of stupidity.  I NEVER thought I would be this upset over some guy!!! Who cares that he loved me through my worst?  I simply had hope and faith in humans  – and now i feel so duped, like it was all a show just to prove to himself that he could go through it (subconsciously).

We’d been hanging out more and more these past 7-8 days and I thought it was a good sign, but tonight I saw a woman come over to his apartment.  he lives one apartment away.  No big deal, right?! Except that he told me he was going out with his guy friend and he said if this guy didn’t call him then we’d go see a movie tonight.  We had laready spent the day togethr running errands and having a good time doing it.  I even helped him put up decorations at his new place.  I even asked him to tell me if he was going to start dating then to please let me know so i wouldn’t have to be shocked.  He agreed and said he had zero interest doing that right now.  BULLSH&*(!!  Apparently it has all been a lie.

I know I need to get back to my own life and MOVE ON.  I just don’t know how yet.  I mean, this will certainly help!! Now I have a reason to slam the door shut and not see him at all – but before it was like this odd limbo… trying to be good so he could see that i am not sick anymore. i haven’t had 1 pancreatic attack around him in months.  ive been uber-sweet so he could recall all of the good times.  BUT I had no idea it was like this.  I feel like such an idiot.  I can’t believe I’ve been so fu^%ing sweet to him since he broke up with me.  If I had known it was about a woman then I would have just moved on sooner and stopped crying ages ago.

I know I need to stop crying and buck up – put my “bootstraps on”.  To get on with my own life.  I know I need to do this.  I will no longer be sharing, kind and gentle.  I will simply snip snip snip and cut him the f&** out of my life right away.

I believe it is a woman he works with. And because of the prednisone weight i gained earlier in the year i feel like triple shit.  I am supposed to be 135 but I am 175lbs. I’ve never been fat my whole life, but I know I am now.  Plus, now I feel so ugly.   I’m going with my friend to a weight watcher’s meeting in the morning @ 730am  (it is 445am).  But I can’t even go to sleep.  i am so upset right now.  Its way too late to take a sleeping pill.

Who would ever want to be with me – even once I am healed from this experience?  the mental and physical toll of this is too much.  I simply am very unhappy being on earth right now. don’t get me wrong, I would never do something horrific, but I certainly have thought about how nice it would be to be dead finally.  none of this has killed me yet and I honestly don’t know hwy.  It should have. I mean, I might never be able to have kids.

RA, CP, a metal pump, Dr visits all the time, prescription meds all the time.  I can’t go to far for too long without needing my pump refilled or my Enrbel cold.    Maybe i’ll just walk around Hollywood and try to calm myself down.  I am very un-chill right now.

love is so confusing and messed up,  Sasha… no xoxo’stonight. sorry.





Jax and Sasha Sexathon

16 09 2008

The word sexathon is so dirty, naughty, and hysterical!  I’m feeling much better after the alarm bells all went off when Jax wanted to breakup because of being tired of dealing with my illnesses.  I am still living in fear that he’ll leave if I feel bad for more than a few moments…but I don’t have a choice – I am forced to live with my diseases whether I want them or not.  If Jax ends up leaving because of my diseases then I can’t stop him or blame him.  It is a reality that I am faced with that no matter who I am with there will be some care-taking involved.  He said “I don’t know how to switch back to being your lover after being your caregiver for so long”.

I’m sure he’s not alone, but it’s hard to find anything about this on the web because people are so afraid to admit that they haven’t had sex for over a year due to illness/disease/pain/depression, etc.  Some days are good and others are simply horrific.  Many of you that have read my blog before might know that Jax and I have sexual/intimacy issues due to my diseases.  Ever since my pump got “installed” with surgery last February07 we’ve gone to therapy, tried all kinds of things, but ultimately had not connected in the direct sense of the word sex.

I don’t understand the concept of lover vs. caregiver as it stands now.  Meaning that I am no longer in that emergency state.  I’m at that place where I am stable and just seeking for my life to share that stability.  Jax always reminds me that most guys would’ve been long gone by now. My diseases seem to drive those I live the most away. Or people simply can’t believe the pain can be so severe on and on and on.  Who knows?

If Jax left me wouldn’t this pattern repeat itself over and over in my life unless I drastically changed things?

I’ve finally taken matters completely into my own hands (no matter what I write, the words are all sexual innuendos at this point).  I’ve decided that I need to be willing to change.  I think it’s been really easy for me to blame Jax for no action, but then I realized I haven’t been the first to initiate things in twice as long.  I used to try to initiate, but would get the subtle rejection so I stopped trying.  I realized that this was ages ago so it couldn’t hurt more than it already does to be the initiator.

I put my pride aside and bing bang boom… things are starting to work out again.  We’re totally out of practice, but at least we’re still able to have a good time.  We giggled and laughed and made fun of our selves for being out of shape.. and I tried to think around my RA (try doing repetitive hand motions when you have severe RA!!).  I mean, I cant even masturbate as I mentioned before because my RA is so bad.  I now have to use “equipment” which I loathe. I was an all natural girl!

Jax and I have been in this new phase we’re calling “CHANGE”.  We made a promise to each other to change at least 1 thing per day.  This can be doing something differently than before, doing something new, or simply switching who leads something we’ve done a lot but never been the leader of doing.  We’re going to join the YMCA so we can start working out (so I can lose those last 30 pounds that are lingering since that damn prednisone. We’re going to go to bed earlier, and I’m going to eat only a liquid diet for lunch for a bit.

I’m so grateful Jax did not leave me. (<–Read the background on this). I would’ve always tied it together with my weight being higher now than ever before (from the prednisone).  What would I do if my RA magically went away with my pancreatitis? A rhetorical question to be sure!

love Sasha,xoxoxox

Safe Journeys.