8 08 2009


Letter to Sasha: Hi,  My wife is currently living with Chronic Pancreatits and has asked her dr. about a pump, but he seems resistant. What did you have to do to get one? From your searching, is there anything that you could suggest that she needs to do to get it quicker? (btw, does this pump the medicine directly into the pancreas; near it?)

Glenn / Submitted on 
2009/06/29 at 11:34pm

From Sasha: Dear Glenn,

I’m so sorry to hear about your wife’s CP!! I am sure many people are curious to know the great questions you’ve asked! First, the intrathecal pump was surgically “installed” by my pain management doctor. He had to try less invasive things first such as a celiac nerve block using an injection of botox to numb the area. It worked a tiny bit (although I didn’t think so at the time – only upon reflection did I realize it had helped. Then he did a spinal stimulator next which is a electronic device that vibrates and the goal is to eliminate the pain by altering how your brain receives the signal. That didn’t work because it had to go to high to work which then caused my entire body to feel electrocuted at all times. Finally, after a year of intensive psychotherapy that my Dr required I do before installing the pump, I was taken into a brief surgery. The Dr. puts the Medronics-brand pump in your abdominal region on either the right or left side. My torso is super short so my pump hits my bottom rib and my top hip. It can be uncomfortable at times but NOTHING like pancreatic pain.

The intrathecal pump then has a catheter… Read the rest of this entry »



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


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 »


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.


25 10 2008

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

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

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

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

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

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

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

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

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

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

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

Jax and Sasha Sexathon

16 09 2008

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

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

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

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

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

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

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

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

love Sasha,xoxoxox

Safe Journeys.

Pain Is Like a Box of Chocolates

29 08 2008

P.S. If you have already read the recent post “getting Help for R.A. you might find the new comments for our reader very Heidi interesting.

Pain is Like a box of Chocolates….
Some people have more than one autoimmune disease. I do. I have R.A. and chronic pancreatitis.  When one is bad, so is the other.  They are like twins feeding off of each other.   Sometimes I feel like I’m being crushed under the weight of it all. Today was one of those days. No matter how much medicine I took and regardless of the morphine in my pump I couldn’t move past the pain. I know my bills can’t wait for me to feel better. I know I must move forward. But today I couldn’t move from under the sheer weight of it.

Drifting back to the memories in the hospital of first being diagnosed with idiopathic pancreatitis I was perplexed. How did this disease find me?  Then much later when RA sprung up like a much faster demon I stopped myself from crying. Both diseases equaled pain. Pancreatitis grabs my ribs and ripples pain through them. I’m afraid to breathe deeply.

I know there might be days where the pain makes me so depressed that I don’t understand the point of being alive.  But then I remember that is the pain talking, not me.  I love being alive and doing myself in over pain is the most selfish thing that I could do.  I’ve seen enough in life to know that it’s better to stay on earth in pain than to be gone.  My folks had a friend with a lovely family of 3 kids.  He had severe back pain and after several failed surgeries he killed himself.  I always think of his story when I feel the pain is too much.  He didn’t know himself anymore and didn’t want his kids to remember his pain and complaining – but instead that is what they remember the most about their father.  And I couldn’t bear that memory about myself.

The pain slices through my back and wraps around to my ribs in a second wave of pain. It’s like a vice grip on my ribs. The pain deferred from one spot to another. Perhaps one organ simply cant take that amount of pain. I know that if I ask for it to release me that it would kill me first.

Jax made tacos for us tonight..Taco Tuesday as we like to call it.  And he suddenly crashed asleep on the couch – leaving me to my own mind and myself the rest of the evening. As pain swirled around my head and my universe i could remember moments where the pain fell to 4th place or even 5th and so I know this time it will too.  I just have to remember that every moment is not permanent.  Jax and I haven’t had time to get back in sync fully yet since i’ve gotten home because real life marches on with work and to do lists.  But I know that this weekend we will be sweet on each other and go get ice cream by a bicycle store while we dream up the bikes we are saving up for right now.  i just want an old school Schwinn.

Hopefully RA doesn't keep me from a Schwinn
This kid says: “RA-please don’t slow me down!!” I want to ride my Schwinn!!

I just have to remember to keep dreaming and thinking of the next part of our life together and separate while we have smiles, great goals, things beyond our wildest dreams, and more of this pain under control!

For me, Each day here is borrowed – a gift. So I can’t complain about the pain that can take up days of my life. What will I remember about the pain when I’m in heaven?

-Sasha xoxoxo