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

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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 ###





READER COMMENTS June09

1 06 2009

Thanks to the readers of this site – I share your journey with you.  Many of you stumble on the site looking for answers to questions like how to get through another day under enormous pain from either Lupus, RA, or CP.  You can search the site for terms or keywords I use in any blog post simply by entering that word in the search bar on the midway-upper right.  Some of you want to know my own journey living with so many autoimmune diseases and I’m sure you’re hoping to find some key to unlock the mystery of how to get rid of the pain.  Some of you might be looking for solutions to get on SSI or other financial aid.  Hopefully you’ll find that this site offers some hope to you or your loved one.  I’m currently in the management phase of my pain control.  That alone is a miracle.  I finally have my pancreatitis at a liveable level thanks to my intrathecal pump.  I don’t mind having a big hunk of metal in my body – how could I mind something that has taken away that deathly pain?  I’m also lucky that I have world-class doctors here in Los Angeles.  I think i’d still be in all kinds of pain if I didn’t live in a major medical city.  If I didn’t live here then I think i would’ve found a way to travel here to at least get a great doctor several times a year.  Doctors outside of LA, NYC, and Houston tend to default to the response “you must be crazy” before bothering to find a reason.  

I;m in the midst of making peace with the fact that I will never be able to have a chid from my own body.  I’m 36 now and dread that reality – but it would simply be far too dangerous.  It’s so sad though… I never thought the option would be out of the question, but now it really is.  Even if a high risk obgyn said i could do it – I now know that Dr’s these days still dont see the whole body – – they just see their individual parts.  ..And that makes it even more dangerous.  

Many of our readers are curious about prednisone.  I’ve written a lot on this topic so definitely do a search to find al the posts on that topic.  One reader was curious if gifts work for doctor’s offices- YES  – absolutely.  I often give gifts at holiday times to the ones I see the most – but remember to give something fun and healthy because everyone gives sweets and it’s a real drag for them to get more.  

One reader wrote in about being so angst with pain that they felt suicidal.  If you read back over the past 6 months of my blog you’ll definitely read up on my experience with being severely depressed.  Just remember that life always changes – even if it seems impossible to you right now.  When i hit rock bottom recently I couldn’t fathom anything was going to change – but literally only one month later I’ve made new friends, started going to a new recovery group for people with depression & anxiety, and now I even have my datebook as filled up as I want it to be!  I never thought I’d get out of that depression and am amazed at how quickly everything changed.  

(READ ON FOR MORE READER QUESTIONS ANSWERED on RA & CP) Read the rest of this entry »





AUTOIMMUNE DISEASES GALORE (Part I)

27 05 2009

AUTOIMMUNE DISEASES GALORE (Part I)

Thank you to all of you wonderful readers out there who have sent the loveliest messages to me.  Encouraging words are  awesome, but knowing that behind each email, comment, or call that there’s someone who knows my physical and often my mental pain – that’s amazing.  As many of you would concur  – I would not wish the pain of RA, CP, or any pain of the heart on anyone.  

THE OVERVIEW

My heart and spirit are much lighter today then in many months.  Why the difference?  First, I was pulled off of Wellbutrin (an anti-depressant) and within 7 days my entire outlook felt brighter then it has since November (when I went on it).  I am glad i tried it out – I really did need to be on anti-depressants at the time… but I am shocked at how suicidal it eventually made me feel.  I broke all of the glass in my kitchen, cut up my arm really badly (on purpose), then cut up my legs and other arm when that didn’t seem to do the trick (not to die, but simply to cause myself that numbing pain that all cutters know so well).   It was a nightmare, but for the first time I see it was really a call for help.  I needed help so badly.  I was/am deeply lucky Jax (my ex-boyfriend and best friend) heard all the glass breaking because he came over and helped me clean up.  Then he called my parents and doctors.  Of course I feared he’d want to stay far as hell away from me after that but it’s had an odd effect I’ll write about in a minute.

So this is the state of things now:  I just got diagnosed with my 4th autoimmune disease: DIABETES!  I had pre-diabetes for the past year, but now it is full-blown diabetes.  This is the cause of my never-ending weight battle.  Now I’ll still have to work out 3-4 times a week, but at least I’ve begun moving the scale (and not just under the table).  So 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, 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.  (Read more about my personal life on this subject here)  I’m sure it’s all related in some way that modern medicine can’t decode. 

 

THE DEPRESSION/GETTING HELP

Now, about my severe depression.  I am feeling a lot better, but my Dr’s have told me it is very usual to fall into this trap AFTER the pain is finally under control.   Read the rest of this entry »





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