BREAKDOWN CENTRAL

15 03 2009

I’m taking a little break from my resource section I’m creating to talk a little bit about myself.   Beyond being just Sasha, I’ve been stuck in this awful depression for almost 8 months or so.  You see, I’m an extrovert  – I love people.  I thrive when I’m around a lot of people.  I used to have a huge network of friends and colleagues.  But when I got sick and the years passed – 1,2,3 I lost almost all of them.  A friendship can only thrive when 2 people are putting there all into it.  I had no energy for myself, much less a friend.  Over time I watched my relationship with Jax dissolve.  He was always so helpful to me and very loving…but he couldn’t deal with knowing I was in pain.  Even as a friend it’s hard for him to know I’m in pain.  Is that what started the depression?  Or did the pain start the depression?  I guess it’s the story of the chicken and the egg.  My close friends I have now all seem to live far away.  Many of them joke that I should have a whole season of House devoted to my medical issues.  I only wish i had House’s team to cure me for good and forever!

(Read on about Internet Dating, Prednisone Weight Loss, CP Patients Beware of CatScans!, and Getting Un-Depressed) Read the rest of this entry »

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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.





raining inside

6 01 2008

It’s raining…pouring outside. I’ve got an umbrella stuffed down my jacket so I can type on my phone & stay dry. I’ve got a case of deep depression right now. My meds aren’t even cutting through it. I feel so pathetic right now. My umbrella (brollie) just broke apart. Jax is asleep…I’m outside feeling sorry for myself.

It could be: lack of sex (seriously), jax & my future: probably no and never kids (which I’m not ready for now but I’m 35 and freaked out that it will be impossible due to health risks/complications), client job I never did and can’t seem to do (a first that i’ve hardly even tried), one more day of antibiotics but still with cold, still fat from prednisone (or just life), 2 shitty chronic diseases plus more symptoms that seem to point to lupus, too much work on deadline, worried that Jax is tired of me and seeking pleasure elsewhere, maybe it’s the fact that people think i’m fine by looking @ me (except obviously i weigh more) but the energy to hide all this or just not go on and on about it is exhausting – forget chronic fatigue syndrome this is where a lot of my exhaustion comes from, lack of sleep from so much pain and agony, and last: knowing I should be all spiritual and shit about this all. Oh and then the symptoms of the diseases which kicked my ass left and right all week. -sasha.