WHAT-I’M NOT DEAD YET?

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

PAIN PUMP PLEASE

LETTER FROM A READER ABOUT THE PAIN MEDICINE PUMP FOR CHRONIC PANCREATITIS:

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?)

Thanks,
Glenn

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

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 that goes out and up the open area of my spinal cord and stops right at my pancreas area. He gave me an extra long catheter in case i can have kids – although that is basically out of the question now. Anyhow, The pump delivers a numbing medication Bupivicaine (spelling bad I am sure) and the Fentyl and Morphine. It puts out tiny micorgrams of the meds which is awesome so that it not only avoids my liver but my brain, as well.

HOW DID I ET MY Dr TO PUT THE PUMP IN? Well, first question I’d ask you is what doctor are you asking to put it in? If it is not a pain specialist than you’re bound to get a no. In fact, I was about to get a stomach tube put in which would’ve destroyed my life but my Internist protested and begged for the pump instead. Also, my psychologist told the pain Dr and my GI that if i got the stomach pump I would very likely kill myself. Next question I’d ask you what city you are seeing this Dr in. If it is in a smaller sized town or city that is not forward thinking then the reality is that they don’t really know anything about the pump. You might seek out a larger med center pain specialist like Houston, Seattle, LA, and possibly NYC. You can always seek out help outside your city because there are no rules when it comes to living in that type of awful pain.

I’ve had my pump over 2 years now and I couldn’t have lived this long without it. Also, I was already in bed 5 out of 7 days of the week and I was miserable. Now that trauma has been lifted from my life.

I hope this helped and thanks for writing.
love,
sasha xoxoxo

RECOVErY

Recovery – if I think of the word it is confusing.  That’s if I’m really analyzing it in great detail.  I refuse to be seen as a sick girl – no one would think it if they saw me in person.  But underneath a very sheer, thin layer I am not well.  Upon closer inspection you could see my scars.  A new thick short scar on my forehead from falling through the glass window while I was sleepwalking.  A long, thick scar running from my lower left rib to my pelvic region.  It’s lumpy and sets off metal detectors.  I refuse to go through the xray machine. I don’t want to chance any mishaps like leakage.  One accidental drip from my pump laying underneath the skin’s surface and I’d die instantly from morphine overdose.  I don’t usually obsess over dying from it – it’s made life virtually pain free compared to the long, hard years.  The next scar runs along my lower spinal cord.  It’s also lumpy.  There’s a piece of plastic sitting beneath the surface that bugs me from time to time.  I hope no man runs his hand sexily down my back.  What?  It could happen!  

 

The next 3 scars are a set.  I got them from a laparoscopic procedure to take out my gallbladder.  I’m temporarily reminded of the horrific pain post-surgery I had been in and the many near misses there were in order to stay at home rather than the hospital.  Next my arms -wow!  The right arm has a deep wide scar the length of my entire arm underside.  It goes from my elbow down to the start of my hand.  It’s bumpy, freckley and so long that you can’t help asking what it’s from.  The next one is petite and is a soft squishy scar cutting across my belly button.  It’s a goto spot for future surgeries.  

There’s so many more, but i’ll stop there.  Thee scars and lumps are what make it so obvious that I’m nt well.  A part of me wants to erase every single one while another part of me is seriously proud of them all.   Given the choice I’d keep  all of them except the ones running back and forth across my wrists.  

love Sasha xoxo

READER COMMENTS June09

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)