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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NEW START

31 07 2009

Starting today I am going to change the direction of my writing a bit.  Of course I’ll still write about living with Lupus, RA, Chronic Pancreatitis, and now Diabetes Type 2, but I am in a unique situation right now so I am going to write more diary style from this point forward for awhile.  The reason?  Ahhhhh… And so it begins.

One week ago I started my first day as a partial hospitalization patient of a mental health program to treat my severe depression, to get my diseases to a more manageable level, and to deal with possibly the root of it all  – PTSD: Post-traumatic stress disorder.  It wasn’t until the 1980’s that doctors begin to realize that soldiers returning from battle suffered the same symptoms as individuals who had undergone unspeakable horrors at home.   It was actually a bit of a fluke in a study they were doing that eventually led them to that conclusion.  It’s unclear if Read the rest of this entry »





REBUILDING YOUR LIFE

5 07 2009
Hi All!  I am bright and cheery today (which if you’ve read ANY of my posts in the last 6 months you’ll know how very rare this is indeed)! It’s the fourth of July, but certainly not what I’m going to write about.  I’m not going to write about Iran or politics or religion.   I’m not even going to write about spirituality or marijuana use for pain – nope – not me.  I’m using today’s blog post to talk about suiting up and getting your game on – – Get out there and play life — Damn It!  

As any and all of you out there with a chronic pain issue OR with loved one in that situation know well our lives all get eaten away slowly but surely by this monster or demon called disease.  Whether it’s a known disease or not – it’s ripping the life force directly out of us – ALL OF US.  I definitely am counting the caretakers in this big bowl also because chronic pain chips away at our tolerance for other things and we start to see life very differently than our peers.  Before you know it 5 years has gone by and what do we have  to show for it other than more pain or worry wrinkles?  Well… I wish i could let you whine and moan about how life is being ripped out from under you BUT that’s not what this post is about – it’s about the exact opposite.  

HOW TO REBUILD YOUR LIFE – IN OR OUT OF PAIN (no matter how excruciating)

I have finally come to understand a few things about dealing with my illness and myself.  Whether you have RA, Lupus, Chronic Pancreatitis and Diabetes ( i have all of those) or some other set of diseases, these are some things i’ve recently come to realize.  I can’t continue to watch my life slip away like this.  Even though I’ve become highly functioning again (nowhere near where I once was) I need to keep a few rules in mind.  I so badly wish i did this the entire time I was so ill rather than waiting 6 years into it.  What a huge mistake.  Now, I’m having to pretend I just moved to Los Angeles in order to cope with the loneliness better.   FIRST RULE:  I MUST CALL As much as I don’t want to call a single soul, I must at least TRY.  I promise to call at least 3 phone #’s on my call list.  This goes as a rule EVEN if I’m in bed the whole day unable to get up (there are plenty of those).  This should be split up between doctors, insurance company (or business-type call), and one friend.  IF I had done this all along I would not have to be in so much agony over the pathetic stacks of paperwork I still have left to complete.  SECOND RULE: “I’M TOO SICK” IS NO LONGER A VALID EXCUSE.  This means that I must find a way to do the bare minimum of 15-20 minutes of email every day.  It’s horrific to wake up one day and realize your credibility’s in question because you never reply to anyone.  If I need to find a way to hire a helper for ten hours a week – then I need to find a way to do that.  If you pay them $10/hour (more than minimum wage) that’s only $100 a week!  I will find a way to do this from now on.  My life is worth enough to not give up on it.  THIRD RULE: My caretaker is not “my bitch”.  I should try to rely on myself for every single thing possible.  I should evaluate ALL things my caretaker does for me and try my very best to take over some of the responsibilities again myself.   The BIGGEST mistake I made when Jax still lived with me is that I relied on him to wake me up, to remind me to take my medicine, and to remind me to get off the computer (STOP working) and eat.  I was a diehard workaholic because it helped me NOT think about the pain.  Jax never resented me for these, but it was all of this small stuff that ate away at HIS independence.  He needed to be free of me when he was out of the house and in it honestly..but I thought that if I gave him little things to help me with that it was beneficial in some way.  IT WASN’T.  Jax was and IS amazing  – but I’m an adult and even if I’m really sick I can wake myself up to an alarm clock.  Jax had enough to worry about.  

There are so many more items like these.  Perhaps if I’m in the mood down the line I’ll continue to write more of these.  Essentially, I let myself kick and scream a little too much (in my own sound opinion) and therefore I lost so many “friends” in the process.  I kept thinking that I simply didn’t have the energy for it.  And perhaps I only think it’s possible now that I’m functioning again…but I do think I could’ve made more effort even FROM bed instead of totally tuning out.  Now, I’m having to try so much harder to make new friends because I rarely have enough stamina to work a day AND go out socially that evening….  I know all of this is really easy to say I’ll do – and it’s an entirely different matter to actually  do it.  

BUT, simply put I wish I had my old life back.

I was very successful, had a full house of friends, had a “life” outside my back porch and I was full of energy and life – some call it zest. I can recall the zest from time to time but nothing like I used to do.  Now it takes energy to just get my work done each day – much less have the energy to go out or see a movie.  I lost so many “friends” that now loneliness greets me like an old blanket.  It’s awful.

More chipper days to come (so they say).
love, Sasha xoxoxo





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 »





CHRONIC PAIN SUPPORT GROUP – LA

10 04 2009

Chronic pain support group – Los Angeles

Do you live in the Los Angeles area and interested in meeting up in the real life world by joining a monthly get-together group for anyone living with chronic pain and their mates?  If so then please read on for details. for event on Sunday, MAY 2nd, 2009 @ 6pm in Hollywood, CA.

I’ve decided to start a monthly get-together for chronic pain people and their mates are invited along also.  Of course we can pay a lot of money for someone else to put something like this on for us… but I love the idea of hosting the event at my place  – so it’s comfy – grab a cusion, a blanket and the couch.  Please email me for the details.  Our 1st get together will be the first Sunday evening in May – Sunday MAY 2nd, 2009 @ 6pm.  (Doing it on Sunday will hopefully allow people to avoid the traffic, but also allow them to still have the entire weekend for themselves).  I’ll also post this in several places to get a larger group. Feel free to post this on other sites. My ideal group size would be 14 people.  Email: lifeofsasha [at] gmail.com.

– love Sasha.  xoxo





PAIN MEDS & CURRENT JOURNEY

16 11 2008

Hi there.  If you are new to my blog please visit the about page.  This site was created by me (sasha)  because I have RA and chronic pancreatitis (CP).  Some blog posts are more about RA, others are more about CP.  The ones in between are about living with a chronic disease and the journey it takes us on.  A portion of this site is about the caretaker/caregivers journey.

PAINS MEDS  – Chronic Pancreatitis – The Definitive Sasha Story.

Many readers write to me about their pain med routine and how to resolve this anguishing battle.  I have luckily come out on the other side of pain meds so let me briefly explain my journey.  When I was first in the mystery zone and then finally diagnosed with CP in 2002 I was on major amounts of demerol. It was absolutely like candy.  I was given fentynl suckers (usually for cancer patients) and liquid morphine.  I could not take Vicodin because a) it would do nothing b) i always vomit 30 minutes after taking it.  I was on this hardcore pain killer regimen for a few years.  I felt tired all the time and clearly drugged up.  But I had no choice.  I had severe constipation and wouldnt go for around 12 days in general.  I tried everything.  i remember once I even took that awful fizzy stuff you take before a colonoscopy TWICE in one evening and still ZERO bowel movements.  The only things that helped (including miralax, enemas, exlax, suppositories, and may more)  were massive quantities of prunes and colonics.  Without those two friends I would’ve died from toxic poop.

My GI talked about a whipple for my CP, but explained it would do nothing for me.  He felt I would still be in the same amount of pain after.  We almost did a stomach tube until the psychologist stepped in.  I would’ve had to have an IV tower 24/7 for a full year.  What a major non-workable scenario. (More on this here).  My GI whom I love told me there was nothing but pain control that would really work.  He urged me to never do another ERCP.

Eventually the state board contacted my GI doctor and said I was taking to many pain meds!!! WTF!  What could I do.  I thought i was being accused of being a druggie.  But luckily my GI referred me to a pain management clinic and it CHANGED MY LIFE.  Not all pain clinics are good so please be very careful and do a lot of research on the doctor.  Mine is always a top 20 doctor in the US for pain management so I felt like I was in good hands.  He takes a 3 pronged approach – mental health care was critical, next was visualization classes, and finally my bi-weekly pain med clinic appts.

The first switch was medication.  I got on percoset (oxycotin), fentynl pops, and slowly but surely he stabalized me.  My anger started to disapate.  They then tried a neuro-stimulator but no effect.  (More on this here).  We tired a nerve blocker also, which helped but only for a short time and tiny effect.  After one year of the 3 pronged therapy I was ready for my pump.  (Read all about it on these pages. Me and My Pump I and also Part II).  I am now finally living under managed pain care.  It has changed my life.  I feel more normal now and I have hours without pain!!  It is unbelieveable!!  I can’t make any specific recommendations to you – but i would urge you to seriously get second or third opinions before doing a surgery that you don’t know much about – particularly if you are not living in Los Angeles, Houston, or NYC.  These are the only 3 medical centers that are using absolute modern technology.  Otherwise you are getting knowledge from 10 years ago.  Perhaps the Mayo Clinic is progressive, but I could not go there financially.

Now i am still on Percoset (oxycotin), but only 1-2 a day.  I also take a lesser known drug called levorphenol for pain.  It is longer acting but takes ages to start to work.  Between these and my pump remote I am living tolerably.  I will lose the $4000 remote in December since it is only a loaner so i know I will have a rough time being without it… I’ll go back to being on a few more meds.  But now I know I was not a druggie.  I was a person in a hell of a lot of pain.

CONTINUING JOURNEY.  RA & More

I’ll write more about the continuing journey later this week.  I still have severe insomnia.  Also, I just started on anti-depressants since I just couldn’t stop feeling fatalisitic after Jax left.  I lost my support system.  I lost my unconditional love.  I’m reading a book right now called SICK GIRL about a woman living with a heart transplant.  She’s truly awful and selfish.  She’s a whiner and I can’t believe her man stayed with her.  It pisses me off to no end.  I am single now and on the “market”.  I am nowhere near ready to meet anyone, but I’m starting to surf the internet dating sites…I’m depressed about that alone.  No guy wants to be with a woman over 35.  I’m forced to lie about it.  Plus who wants a girl with insomnia, two chronic diseases, and so much more?  No one.  While Jax can hit the market with a zillion options i have none that even come up for me on e-harmony  – NONE.  “sorry there are no matches for you at this time.”  Can you believe it?? More soon.

Love Sasha.  xoxo





PAIN and DEPRESSION II

2 11 2008

CHRONIC PAIN & DEPRESSION Part II – SWOLLEN BLOB/RA7

Please read Chronic Pain & Depression Part I to get my full background if you are new to the site.  It’s focus is about my other autoimmune disease chronic pancreatitis (CP).

BACKGROUND/So getting you quickly up to speed: It’s been 6 long weeks since Jax split up with me and moved 2 doors down.  It has really shaken me up.  It is not the core reason I am so severely depressed, but it was certainly the catalyst for my deep depression.  Clinical depression is a pretty serious issue as I am coming to learn.  If I don’t get my act together and snap out of it then I could end up with diseases far worse than RA and CP.  Mainly the issue is that Jax leaving has accidentally brought up all of my old childhood BS.  Well, it is not BS at all.  It’s some very heavy sh*%@!!  Sexual abuse comes back at you so many times through your life.  It is so unfair.  My experiences covered many years and with over 4 different people who did not know about any others being so awful at the same time.
But I really don’t want to write about this topic now.

To make matters more complex I recently switched to a new Rheumie (rheumatologist) and am now waiting for the paperwork to go through on the Enbrel.  So i stretched out 1 month of doses of Enbrel to 2 1/2 months.  Naturally, all of the RA symptoms have been coming back full force.  Massively swollen ankles and legs.  My feet are larger than horses hoofs. THE INSANITY is  that I waited an entire week to get the prescription filled.  I am positive I have clinical depression – as is my Dr.  but what to do about it is a totally different story.

cake195

IN THIS MOMENT: Since today was my birthday, I invited a small group of friends (5 total) for sushi dinner.  Jax was one of the guests.  I’m so happy I invited him.  All of us had a very nice conversation about politics, silly things and such.  It was great to get out of my own crappy head space.  Even though I am a total dog person I did get a kitty-cat – Guvnor (pronounced with a British accent) and that is helping my blues a lot since he has real needs and I can’t just ignore them.  So far I love the responsibility.  He’s getting used to me and the house so looking forward to taking photos for this site.

OVERVIEW: I imagine it must be very common to have a chronic disease along with depression.  When my RA is untreated or under-treated then I get so extraordinarily tired.  It’s the “I can barely move” tired.  It’s extreme and insane all at once. That causes me to fall behind on work and important things in my life… which leads to more depression until everything mounts to become full-on depression.  I’m at the point now where I have severe insomnia, but so afraid of the sleeping meds that make me fall asleep for 15 hours straight.  It’s probably because I need 15 hours straight of sleep to be ore healthy, but since I am looking for so many hours a day and then doing the work I have for current clients I simply don’t have time for that much sleep.

MY RA STORY: One year ago almost to the day I was diagnosed with severe RA.  The damage was very obvious on the xray and MRI so I was put on steroids (prednisone) and promptly gained 45 pounds.  My doctor was awful and only asked me to stop eating so much. She hadn’t mentioned that I should join a group like weight watchers.  After that rheumie put me on methotrexate (which would also be the plan in case I had lupus).  During that time my relationship w/ Jax was getting harder and more strained.  We had aready gone through three years of the medical roller-coaster with CP & surgeries in order to live. I started to hate my appearance and myself.  It was a very slow process to get here to this place where I am at now.  Before this i had the confidence of steel.  I was the “can do” attitude poster child.  Slowly it all gave way to a haze  –  the haze i find myself in now.

I imagine the path to discovering you have a disease is often like mine.  I certainly didn’t realize it at the time, but now that the dust has settled I realize the whirlwind I had gone through.  I was using a cane all the time.  I couldn’t grab things w/out  much focus and effort. If I had buttons on clothes I would be forced to deal with them but my path was to always buy clothes without laces, buttons, or any small fingers-needed items.  My legs and feet were so giant and swollen at 3 1/2 size their normal shape.   I couldn’t stop sleeping.  At one point when I didn’t know I had RA & I also had untreated pancreatitis I slept 5 days a week and then stressed out the other two while trying to squeeze a week’s worth of client meetings and work into them.  At some point during this I started the doses of enbrel.  Within a few weeks the symptoms of RA went away.  It was a true miracle.  But as you might’ve read I have been off of it twice due to my awful finances.  It’s my own fault for spending all of my money on my huge project working with at-risk teens the past two summers. But when the Enbrel is kicking in then things are good again. I got my new shipment of Enbrel in today.  I am so thrilled and can’t wait for the swelling to go back down.  I’m also looking forward to getting back into a decent sleeping pattern.  I am debating whether to take Wellbutrin (an antidepressant) or not.  I might only need proper sleep to get out of this depression.

Over this weekend I realized my depression only has a small part to do with Jax leaving me.  Mostly it is my fears about no one ever wanting to put up with me.  A larger portion is due to my mind dwelling on my past.  There’s been so much violence and sexual abuse in my story/life that I am often amazed that I’ve even gotten this far in life in general. So Jax is only one small portion of my bigger demons.  He’s been a great friend through this even if he broke up with me.  I know I should let go and lose hope so I can move on faster.  Well, I don’t think it’s actually as easy as that.   He got me through the worst of my medical issues for 4 years.  He’s a gem of a person which is probably making this more tough.

I lost 4 pounds this past week from weight watchers but have been pigging out from my birthday week.  It’s only Monday so I have 4 days to be very careful before the next weight watchers meeting.  Now it’s time to go to bed and see how Guvnor the cat deals with it. Anything to keep my mind off of the core issues.

It’s raining now and very late (5am). The rain sounds beautiful.  Goodnight.
Love, Sasha, xoxoxo

ps – dont forget to read about my life with pancreatitis in Part I.