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 »

Advertisements




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 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





FINDING A LIGHT

7 11 2008

I realized that I’ve written 3 blogs in a row about pain & depression.  I’d love to write about cheery happy-go-lucky stuff, but that is simply not the reality of my perception right now.  In “real life” I have to pretend all the time that things are fine and that i feel fine. I spend quite a bit of energy hiding my pain and/or depression which is right now the larger issue.  Frankly, if I was honest with anyone but my blog about where my head is at then I might be committed to some mental ward.  I don’t feel deathly or like being dead or anything, but I honestly can’t seem to shake this depression.

I’ve been looking for solid work rather than my piece meal clients.  My client-base are all having to reign in any spending which has left me in a bad position.  I’ve received an interesting reader comment i’d like to share wth you.  From Roberoo: “I would hope that most of those who have been in chronic pain for longer than a year realize that Intractable Pain can cause isolation. Isolation is like a prison cell for the IP and it is “very” important that all IP patients make an effort to keep the friends they have, make new friends, become involved in groups, churches, PTA, and keep the lines of communication open to others. It is so very important that we stay a social being, as isolation leads to depression, loss of self-esteem, a perception of a higher pain level, and a feeling that we are going this alone which can cut us off from family, friends, and even other IPP’s.

I can totally see how it’s important to continue to go out and meet people.  The irony of course is that hen you’re depressed on top of pain it takes about 85% more energy than normal.  I’m certainly making an effort to get out of the house, talk to friends, and even pulled out my elliptical exerciser.  I figure a little every day might pull me out of it.  I sure hope so!!

I’m curious what positive things I’ve done for myself since Jax split up with me that go inline wit this reader’s comment.  First, I’ve called close friends almost every day.  I’ve called my mom every couple of days which is very unusual for me (usually it is twice a month).  I joined Weight Watchers and have been going to the meetings.  My hope is to meet new people there, but no luck so far. I do go with a very good friend & her hubby so at least there’s some interaction. I’ve been forcing myself to go out to as many things as I’m invited to, but then I ave myself a hard time if I didn’t feel up to leaving the house.  I’ve gone to therapy twice (two different therapists cuz the first one bailed on me), writing here more than usual.

I also got a kitty cat named GUVNOR who is the cutest darn thing I could imagine.  I’m teaching the cat how to “sit”, “stay”, and beg for a treat with its paw.  Hopefully this warm fuzzy super cute little creature will return my brain to normal!! more soon. (photos coming soon).

love, sasha xoxox





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.





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