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 »





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 »





PAIN and DEPRESSION I

2 11 2008

CHRONIC PAIN & DEPRESSION part I – Fighting Death and Pancreatitis
After reading this go to Pain and Depression Part II – Swollen Blob

I’ve given this blog post an incredibly dull title on purpose.  It is an awful subject to be forced to write about. In many ways they go hand in hand.  Some days this is not true, but others it is so dreadfully true.  It seems to come and go in waves.

If you are new to this blog, my name is Sasha.  I live in Los Angeles (but everyone thinks I am from NYC since all my family lives there) and have been a professional business woman & consultant/freelancer for many years.  I’m always given the title “Type A” personality.  I am strong, strong-headed, and also very passionate about my work/career.  You can learn more details about me here and more about my tips for you and more about my medical issues here.  I’ve just gotten through the toughest 4-6 years of my life and now find myself in the maintenance phase of my health journey.  Also, today is my 36th birthday.

I don’t have kids and I’ve never been married.  I am newly single (6 weeks ago ) and this leads me to want to talk about pain & depression.  About 4 years ago I had emergency surgery to remove my gall bladder & appendix.  In fact, I couldn’t leave the hospital alive unless they determined what surgery might be able to allow me to live.  You see, beyond RA I also have CP (chronic pancreatitis).  I remember begging my mate and love of my life Jax to not tell my clients that I was sick or in the hospital.  It was the 4th, 5th, or maybe 6th time I was in the hospital in 2 years and I wanted my clients to know I’d be back at work the next day.  HAHAhahahahaha!!!!  Naturally, there came a point where this became impossible.  It was a HUGE moment for me to actually admit to my clients that I was sick and in the hospital.  Before that moment I refused to be considered a sick person.  I prefer people to remember me from my work.  Initially i got better, but then over time I got excruciatingly more ill.  Eventually I got to a place where I wanted to let go of life/living when the pain became unbearable.  [pancreatic attacks are so painful they are often compared to the pain of giving birth.].  Through the whole ordeal Jax stayed by my side and urged me to come back to a place among the living. I don’t know why I wanted to give up back then, but it’s happened a few times after emergency surgery – the will to fight becomes cloudy even if only for a moment.

During that whole time I tried many Dr’s, medicines, formulas, methods, western/eastern, and was then faced with a horrific decision. My GI Dr. told me I needed to get a J-Tube put directly into my abdomen so food would not go through my mouth.   I would have to carry around an IV tower 18 hours a day and essentially I would be an official “VISIBLE SICK PERSON”.  I refused.  I knew it meant my life would/could be over in 2 years….but I refused to be a sick person.  The opiates gave me such severe constipation that I went 12 days w/out a BM.  (That was WITH prunes, exlax, miralax, enemas, colonics, etc).  For example,  Jax would even go outside to give me privacy! He’d turn up th radio so it would cover up any bathroom sounds.  He made the worst, most embarrassing situations seem tolerable.  He was just so awesome like that.

Eventually I ended up at a pain management clinic and a year later had surgery to implant an intrathecal pump that delivers morphine & fentynl directly to my pancreas.  Problem solved and life expectancy back to everyone elses= unsure. But life had other plans for me….. Go to Pain and Depression Part II – Swollen Blob

One thing I definitely want to mention about this part of my journey is that I had a very sexually traumatic and violent childhood.  The Dr’s have told me that when you’ve been in an extreme environment like I was that studies show people receive the pain signal differently.  I wonder if it wasn’t all of the unbearable stress my body was once under.  But I could not escape that situation.  I tried….and ran away at least 15 times.  But I had career goals and eventually stayed at home until University.

The Dr’s also told me that Jax’s love and affection for me was a key ingredient in my quick healing.  They said love goes a long way.  I know that Jax and I had very hard times through this.  The ups and downs of Dr visits was sometimes far too much for me.  Jax let me lean on him in a way I have never allowed myself to lean on someone before.  I know his love got me through the toughest of times.

Love Sasha, xoxoxo

Please read Part II.





PAIN/ANTIDEPRESSANTS

28 10 2008

If you’ve been reading any of my posts the past 5 weeks then you’ll know that I’ve been severely depressed. I’ve also been looking for work because all of my clients and company work literally dried up the minute the economy started to become terribly worrisome.  All my company contacts have told me that they are being forced to scale back and no longer use contractors.  This is one of the toughest times I have ever gone through that is non-medical. In addition, the love of my life, Jax, split up with me because he could no longer deal with the stresses in my life and he moved next door (one apartment in between) to my old office so he could work on himself.  We had our business together so all this week we’ve been working towards pulling it apart in an organized manner.

On top of this, I take a very low dose of Cymbalta, which is used to treat pain in my case…but I am not on an antidepressant.  (I still get those shocking jolts from Cymbalta).  Tomorrow at the Dr. office I am going to ask for the first time in my life to go on one.  I am a painter on the side and I never wanted to take antidepressants.  I’ve always been afraid it would ruin my creative abilities and urges…but now it has become a matter of life or destruction.  I would never harm myself intentionally, but all my close friends and family know that I injure myself very badly through thought alone.  My health can not hold up under such depressing news on so many fronts. Plus i can’t sleep. I have horrific insomnia and keep sleepwalking although ive not yet heard of anyone else sleepwalking due to enbrel.

I keep falling asleep outside in the chair which has made my RA rage out of control.  I can barely walk again (and will need to use the cane tomorrow) and am looking forward to getting my new shipment of Enbrel in.  My legs and feet are so swollen and I have to take vivarin to stay awake because my body clock has become so tuned in to night hours when I spend 8 hours or ore applying to jobs.

Do you remember the old movie SINGLES?  remember the guy who loses his job and girlfriend so he locks himself up in his apartment and eats crappy food and his place is a dump until somehow he finally gets his life in order?  Well, I’m him right now, but still locked in the apartment mode.  I’m waiting for interviews and hoping something breaks through!!

Finally,the good news is that i started Weight Watchers.  i am not like the lucky people who have taken steroids/prednisone and were able to quickly lose the weight.  For me, the steroids turned OFF my thyroid (I now have hypothyroid) and made it impossible to prevent 45 pounds of weight gain.  I was 130-135 and am now 176!!!  I’ll update my blog each week about my status – My first goal is to go down to 158 puonds which is 10% of my current weight. I am going to Weight Watchers meetings this time with some good friends and I plan on really doing it this time. It’s been exactly 1 year since I started taking steroids.

Thank you for your sweet comments about getting through this dark time.  I do want to write one Jax update.  This past weekend I came to a breaking point where I realized that I need to remove myself from his space.  We were spending a lot of time together even though he broke up with me.  I was loving it – but the times in between were far too painful.  (I just heard a gun go off… oh Hollywood can be so nasty).  A friend told me it was killing me.  So now I have told Jax that I could no longer see him ever again.  I planned on making this true, but much easier said than done. My birthday is this weekend as is Halloween and we’re going to go with friends to the parade here in Hollywood.  Maybe that’s the end of it.  I need to stop having Jax in my life for a bit, but I also don’t want to.  He helped me so much/  It’s so tough to go back to living alone.

Being this depressed absolutely affects my pain level for pancreatitis (CP).  I just have to manage it better.

Love,  Sasha xoxoxoxo





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.