HIT THE WALL

20 01 2010

I haven’t written in a very long time.  I go through phases where I simply have no energy to write.  Also, I go through long phases where I feel as if keeping a blog is absurd and only helping myself.   Then, I read the reader comments you all post on this site and I feel much better and inspired to keep my “log” going.  A “log” of my hurdles and triumphs.  I was also waiting for a “good time” to happen in my life for a longer stretch than 2 days, because I get exhausted writing about the things that are wrong with my life.  One of the only reasons I’ve stayed alive is because of my need for optimism and rejoicing.  In fact, until I experienced true, real, honest to goodness massive depression last year I felt I wasn’t “allowed” to be down.  I already have enough cards against me with my poor health I don’t need the extra social deterrent of depression or complaining.  I’m a “never-give-up” type of person – not a complainer.

The actual reality is that I am extremely grateful.  I have a ton of health problems that have drastically altered the course of my life, but after watching the images of Haiti and remembering Katrina, I think how awful it is for me to complain about my ongoing health issues.  BUT the difference is that those situations are immediate crisis, death in some cases within days rather than what sometimes seems like a very long and drawn out death sentence.  Either way, living with a chronic painful illness is horrific (not to take away from the many people in these crisis that will now also have life-long health issues as a result of the crisis…). For example, recently I sadly discovered a colleague of mine is dead – I found out from Facebook because she lived in New York and I hadn’t bumped into anyone in her circles.  So I read how she died – A very short sickness and then – boom – she’s dead.  That’s what I don’t understand. Why have I lived through some extraordinarily bad scenarios and also why has it been so long and drawn out?  It has required every drop of energy that could ever exist in my body to stay alive – but when my colleague is sick for a week only – she’s dead.  I used to love to girl talk with her (my dead friend).  She helped me out in ways that I’ll never totally know.

I’m torn between feeling awful for my dead friend all the way to feeling like I’ve been cheated out of death myself – In many ways I feel I should be dead by now also.  Of course that is absurd, and I waffle back to feeling extremely grateful that I am alive.   But the reality is that I’ve been so deathly ill so many times that it just doesn’t makes sense to me.  Regardless, her life was important to me.

Last year I had such severe depression due to my many health problems that I had hit a wall.  I found that I could not work , could not think, and that I had also lost all of many of my ” friends” because of my illnesses.  I checked into a 5-month long partial hospitalization program in the hopes of getting my life somehow back on track.  The program was part of the mental health department of a very good hospital).  There, I was told I have severe PTSD – post traumatic stress disorder (I had a very tumultuous and violent life before 21 yrs old).

The program ended for me in November and I met all my goals except for one.  It worked well for me – I was able to rebuild my company from ground up.  I re-opened the doors, took on clients again, brought on a new assistant and 9 trainees.  I’m finally working hard on the projects I had crumbled over in the Spring and Summer.  I at least got all of that back on track. I wasn’t able to bring in enough clients to grow my company to anything close to its former size yet, but I’m working on it.

In truth, I don’t even know if it is possible for me to continue my job.  Even though my work is my true passion, my body is making it impossible to do.  I am fighting to continue my work, but I can see both scenarios happening (1)  me continuing to build my strength and fighting against all odds to continue doing my company & job. (2) me not being able to do the job I’ve always felt I was put on this earth to do.  So facing the reality that I might not ever be able to my work in the same way again is beyond heartbreaking and crushing.

There are so many things I still can’t get back.  First, my Jax.  Even though we are best friends now and see each other 2-3 times per day, I have not been able to get him over his fear of me getting bed-ridden again like I was before I got my medical pump put in (for chronic pancreatitis).  He’s still shell-shocked about all the times I couldn’t walk (from RA).  The one thing I didn’t accomplish in the “program” at the hospital was that I still haven’t gotten an appointment with a proper nutritionist.  BUT I have gotten a disabled placard finally and am applying for SSDI (disability insurance) on Thursday via a non-profit organization’s help. This is the key to my entire future.  I can only work very limitedly so it is critical. Luckily, over 2009 I found many resources in Los Angeles to live with chronic health issues.  Another resource is that I got approved for a disabled van services so that I can take my sleeping meds and not be on the road.

I do feel like I am past that wall, but the new one is the fear that no mate will ever want me.  Who would be crazy enough to want to put up with all of my health issues theat often cripple my life?  Who would want to stress about whether I should give up on the idea of kids forever or try to be cool with the concept.  So much to have running through my head!!  I hate it!! In 2009 I’d often say “I want my old life back!!”   But now I ‘m way past that though

– I’ve got too much going for me – too much I’ve rebuilt to give up or go back now.  But the one that’s still the hardest for me is not being “with” Jax.

Anyhow, I clearly have tons more to write about so I’ll just have to check in tomorrow and try to get all caught up with what’s been happening.

Lv, sasha xoxoxo





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 »





FLEA MARKET

1 08 2009

Brief upate.  Im heading out in a few minutes to go to Millie’s cafe for late brunch and a little sight-seeing at the Silverlake Flea Market WITH JAX!!!!  Wish me luck… Oh, wait, it’s totally unreasonable to thnk we’d get back together while I’m in partial hospitalization for severe depression and anxiety.  So wish me luck in a way – that I make him think abut doing naughty things with me when things are better. – There, that sounded more realistic.

PS – my health check in – Pancreas: In check.  But if I eat a hot salsa meal i’ve got to have my Percoset on hand.  I take a very low dose, but can’t leave home without it.  RA: my limp is not so bad today but my feet are swollen 2 shoe sizes.  Looks like a flip-flop day.  Lupus: In the background of everything I do.  Diabetes: No clue?? what can I eat or not eat? UGH!  No money to see the nutritonist so I’ll use splenda and only eat one cupcake tonight.

PSS- Even though I used the “tags” dating with chronic illness, etc… this is not a “date” with Jax.  It’s an outing of two friends.  Jax & I had lived together for 4 years before our split.

Love, Sasha xxoxo





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

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 ###





THE PERSONAL TOLL (Pt 2)

27 05 2009

AUTOIMMUNE DISEASES GALORE (Part 2)

THE PERSONAL TOLL

THE CAREGIVER’S BROKEN ARMS.

 

Here’s my current autoiummune disease list: Rheumatoid Arthritis, Interstitial Cystitis, Hypothyroid, Diabetes 2 and then Chronic Pancreatitis. And I also have the tentative Lupus Dx sitting in the wings.  I always wonder if it all tied to Lupus.  Anyhow…I was just diagnosed with Diabetes. I’ll try the new meds and come up with a plan w/ my Dr. in about a month.

…the news did not shake me the way i would’ve thought.  Now I think it is all hysterical.  I mean, it’s literally gotten absurd.   I finally feel like this is all so much that I will prevail – I have to  – from where I stand now it can only go 2 ways: 1: UP (the only way it will go) and the other is death – which I have no control over anyhow – and it certainly is no way to live out the days i do have left on Earth…so I am choosing to now laugh in the face of adversity.  You know that great scene in Forest Gump when Lieutenant Dan is legless and sitting on to of the boat  during the hurricane?  That’s me – except for that I am now finally past the storm saying I won.  I know that might sound odd-  how could I feel like I won if I just found out I have another f–ed up disease – but, it’s because NONE of it has had the power to take me down.  NONE of it!  I’m stronger than all 5 chronic diseases and I’m sure if another one got added to the list i would find the strength to feel the same way.  

 

The disease (or rather these diseases) have already taken EVERYTHING away from me that I love and care about.  I am not even exaggerating…. My family couldn’t hold itself up through it, my own father has chosen to be angry at me for it,  my relatives find themselves in the dust simply saying “poor girl”, old friends disappeared, jobs vanished, my career and company fell off the map, and my true love imploded from the sheer stress of the lifestyle this disease gave me.   Read the rest of this entry »





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