WORLD IS BIGGER

9 08 2009

So from time to time you may notice I mention my ex Jax quite a bit.  That’s partially because he’s my neighbor one apartment down (where he moved when he split up with me), also partially because I’m still in love with him, also partially because he’s a huge part of my life.  BUT I want you to know I think about a lot of things and Jax is only a sliver of that time…okay – maybe a large chunk but…  He’s been incredibly supportive of me through this entire illness and now that I’m in the mental health program he’s invested a large amount of time making sure I’m good.  Luckily though I do have other people in my life….but not very many any more (okay – in LA maybe 3 total).  Almost all my former acquaintances ran off when it became obvious I wasn’t going to get better right away.

There’s a saying that I even heard yesterday that people give to a mental health patient meaning the best ,”you have a mental illness…and you may feel all alone, but if you had a physical illness people would be there for you so there’s no reason not to expect the same”.  It infuriates me because it isn’t even true.  Most everyone disappears.  It’s so mentally painful. 

Right now I need friends so badly.  It’s… Read the rest of this entry »

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PAIN AND BONES

7 08 2009

I found this in my drafts folder and it’s amazing how depressed I was only a few weeks ago.  The program I am now in is really helping me get through this depression.  Even though I’m not in this head space now – I think it’s important to reflect on what a bad place I was in:  So I have RA. I hate it.  I have Lupus.  I hate it.  I have Chronic Pancreatitis  I hate it.  I have Diabetes Type 2 and I don’t even care.  Why?  Because it is truly the least of my problems – even knowing that for many people it is a major issue for them.  For me it is just a drop in the bucket.

I hate myself this week.  I hate that I’ve lost everything because of chronic diseases (or at least it feels that way).  I’m trying to get my life back on the right tracks, but I feel so depressed lately that I can barely motivate myself to do anything.  I’m losing work – of that I am certain.  I’ve lost my business, my true love (Jax – you can read more on this in the About section).  I’ve lost so much I don’t even remember all that I’ve lost.  My legs are always swollen and I just can’t seem to find that “happy place”.  I used to have it.  I used to be in it.

I started taking a new medication this past week and it made me so groggy I must’ve snoozed momentailry at a red light and accidentally tapped the car in front of me.  Only it is more like a car accident than a tap considering the cost of the damage.

My hands hurt too much to keep typing… but I wish I could keep telling you about how shit things seem right now.  I’ve lost my sunshine and I don’t know how to get it back.  I did start a prgram this past week for dealing with my depression.  I NEVER had deep depression until these diseases wreaked havoc on me and my life. Well, that and the issues from my childhood.  UGH!!! There is far too much to deal with and unravel about my life.  Why can’t I just write it down on paper and get the fuck over it??? I want to! I certainly don’t want to sit here and bitch about it!!

How can I get ME back??

Love Sasha xoxo

PS – Join me on Twitter: @typeawithra
• Also Join me on IllnessTwitters • And on Meetup
• Come to the Hollywood/Los Angeles Chronic Pain Support Groups next  Meetup: September 13th @6:30pm





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





I’VE GONE CRAZY

20 07 2009

hcpsgpic

That’s right. I’ve felt decent for the past 3 days and have used all of my energy doing the following.  If I had this much energy everyday I could actually change the world.  I used to have this much energy and it makes me simply cry to know it is only on rare occasions now.  So here goes:

1. I started the Los Angeles/ Hollywood Chronic Pain Support Group and set our first meetup as August 2nd, 2009@6:30pm – Everyone welcome. Simply signup and RSVP.

2. Started my new Twitter Account for TypeAwithRA.

Join me on twitter and let me know if you’d like to link up.

3. Started a new group on Illness Twitters.  Not entirely certain of how it all works yet – but here is the link in case you are curious.  Visit Illness Twitters

3a. Clearly avoiding thoughts about something important – ah yes – my severe depression/anxiety that started all as a result of getting so sick, my life falling to shambles and facing the possibility that I have to abandon my life’s dreams.

4.  Finished 2 client projects and only have 4 more to go to get caught up.  I also tackle major stacks of paperwork including bills, health insurance/medical paperwork I need to turn in to try to get financial aide for my health insurance.  If it works I will then post a bit about the process I went through, but so far it is not a yellow brick road.

5. Avoided completing my SSI paperwork.   <<Read on for more on getting or not getting on SSI, an assistant, so many losses due to this disease! and starting day 1 at a mental health program for severe depression >>… Read the rest of this entry »





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 ###





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





WHAT-I’M NOT DEAD YET?

30 06 2009

Some days the severe pain creeps up on me when I’m working or out and about.  I have a handy-dandy remote control unit that goes with my pump for chronic pancreatitis. It’s a lot like the controller you’d get in the hospital to give yourself a dose of morphine.  The great thing is that the remote & pump delivers such a tiny amount but it’s highly localized to give the medication just to my pancreas and nowhere else (liver, brain, memory, etc.).  If the remote is making a big enough dent then I take the regular type of meds – in this case percoset and levorphenol.  I’m only allowed 2 percosets a day so I have to be frugal and watchful of my intake. But enough about the medical side of my life – let’s get into what I am really writing about.

I truly can’t believe that with all of my close calls in the ER that I am still here.  It seems astonishing to me.  But on bad days when the pain is out of control and I’m feeling tired and grumpy I feel like such a burden to those around me.

Although I’ve gotten my pain mostly under control (which is a miracle in itself) I still haven’t gotten my life back together.  I feel like such a drain on those that love me.  I rarely want to talk on the phone and even more rare to feel like I can conquer my stacks of paperwork or email.  I simply don’t have the energy.  Between fighting off the RA symptoms and pancreatitis pain, I simply don’t have the energy to make new friends and go out to new events.  I know the events are there for me to attend  – but I can’t get the stamina I need to leave work and attend a function.  And since Jax split up with me I haven’t had a chance to make new friends.  It’s awful and i feel so damn lonely.  I curse my health issues and scream inside my head at god.  Lately I’ve been thinking how funny it is that we often pretend that if god was walking here among us that he/she would be a homeless street man.  If god has any wits he/she’d be living it up as a billionaire.

I’m on the wait list to start the outpatient day group for depression and anxiety.  I really need some new skills/tools on how to live my life in this scaled down way.  I find I get angry to quickly when someone cancels plans on me.  I simply don’t know how to live in this scaled down way.  I used to be able to get so much done in a day  – now I am lucky if I accomplish one single thing.  Plus, now I can’t seem to stay asleep more than 2 hours at a time.  I messes me all up  – but it is usually the pin that wakes me up.

So the mental health hospital program is supposed to arm me with tools to get by a bit easier. As some of my readers know, I’ve been battling with severe depression for almost a year now.  It’s odd because I’ve gotten my pain mostly under some sort of control, but I simply can’t function correctly right now and every bit of sad news or new diagnosis sends me off the deep end to think about being gone/dead. If I’m not careful I find myself cutting into my own skin (when i was a teenager i used to be a “cutter” so it’s bringing up some old garbage in my mind).  It’s a release of sorts and sends the pain signal to a different part of my body so I get a little break, albeit a disturbing one.

Apparently, it’s not that ucommon to have these issues now that I’ve gotten my pain to a more liveable level.  So i’m certainly not alone…but I don’t get why…. I mean- if  was able to conquer that type of brutal pain – why is it only now that I don’t have the right coping tools? Mainly I feel lonely because I was bedridden essentially for so long that I lost most of my friends/acquaintances.    IT’S SO UPSETTING/sad that I just can’t seem to get through it.

I have made lists of new events and workshops I’d like to go to – but the reality is that it is not very easy for me to go – often I am not well enough.  The times i have broken through the anguish part of it and gone  –  I’ve ended up at the event stuck in the bathroom in an all-out-battle with my bowels.  (I still have a lot of bathrooom issues due to the meds that I take.  I totally accept that this is my life now – so it really is okay with me.  But sometimes I just have a real hard time actually dealing with it.

Love Sasha. xoxoxo