MEETUP LOS ANGELES

20 07 2009

Attention fellow bloggers, websites, admins, etc.  Please post anywhere possible.

The Los Angeles  – Hollywood Chronic Pain Support Group will have it’s very first meeting AUGUST 2nd, (Sunday) at 6:30pm-9pm.  Join and RSVP here.

The Los Angeles / Hollywood Chronic Pain Support Group was established to get together once a month to talk intimately about life, love, and living with Chronic Pain.  It’s important to have a safe monthly gathering place for anyone suffering from chronic pain. With a specific focus on those living with a chronic disease such as one or more automimmune diseases, we share our triumphs, hurdles and pain, but we also offer resources such as alternate medicine pathways and non-Rx treatments to alleviate pain. The meetings are open to anyone living in/with chronic pain. For more information and to sign up and RSVP:  http://www.meetup.com/the-hollywood-chronic-pain-support-group or for those that need a shorter url: http://www.tinyurl.com/hcpsg

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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 »





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.





In the Beginning

10 01 2007

Dateline & Updates: February 2007. I’ve decided to begin keeping a log of my main events/feelings in the hopes to inspire or relieve anxiety in someone else. Not many 34 year olds are about to receive a metal pain pump called an intrathecal pump…and of those I’m not sure how many have a job they love and work all the time but have become too ill to work as often as one wants. I don’t want to disclose too much about my work because I’d like to remain anonymous about what I’m about to write about. (Who really wants to talk about their lover and being forced to be on morphine particularly when very few people would understand it doesn’t actually affect my brain since it goes through the pump directly to the source and therefore requiring only tiny amounts).

Everything started 6 years ago on New Years Eve day. That’s when I first noticed bizarre symptoms. I couldn’t feel my left side from head to toe. It was numb but the skin was over sensitized if you touched it. I worked a lot (average of 18 hours a day) so everyone thought it was stress related. Since my tongue was also numb on the left half, friends rushed me to the ER. The ER doc thought I’d had a mini-stroke. After months of tests for MS, lupus, etc., I gave up and decided to live with it. After all, I told myself maybe it had something to do with getting shingles when I was 6 yrs old on my left side. It’d always seemed weaker.

Sasha Surfs Small Waves

I’d never had stellar health. I’ve had a broken arm and an ovarian cyst rupture before I was 15. Then in my 20’s I battled with interstitial cystitis for 6 years before being cured completely.
(Thank god for UCLA medical center).

But this new oddness in my body was starting to take me down. I started some cycle I couldn’t stop. I saw acupuncturists, therapists, new age chiropractors, medicine shamans, Mayan doctors in Mexico, you name it – I tried it. I followed up on every lead presented to me. After all, I just wanted to get back to work at my normal pace. Friends would definitely call me a workaholic but I was proud of it – I love what I do (which I’ll keep anonymous).

I picked myself up off the floor and went on with things including surfing (which I loveeeeee!!!!) until one dreadful day I ended up looking for a place to throw up. I knew I was in deep health trouble and called a friend to help me. She rushed to her house where I was rolling uncontrollably on the floor writhing in pain. How could I go from literally surfing the day before which requires decent health and strength to this?? Let me cut a very long story short and say this: after leaving my body and having a nurse scream at the top of her lungs repeatedly “stay with us, stay with us!!!!!!” she accidentally saved my life by slamming me into the ER double door frame and jolted me back into my body. I spent the next 4 months in hospitals and new doctors trying to determine what had gone wrong and why I had this pain below my ribcage at my solar plexus and through my back that was relentless. The issue was nothing was showing up in my blood work. This was a true “mystery diagnosis X”.

Again, an UCLA doctor saved my life. My new G.I. Doctor was incredible and believed me. I’d been to numerous docs that told me it was in my head and that I needed a psychiatrist. I wanted to be back at work so nothing was further from the truth. They were so rude! But he believed me particularly when he did a test called an ERCP, which puts a camera down into my pancreas. Amazingly, this reproduced and induced the same events as the first ER visit and almost killed me for a second time. In fact, he told me if I had another ERCP in my lifetime I would probably die.

He diagnosed me with chronic pancreatitis with no cure. He was so sweet about it and understood the blow this was to me. Since this blog is more about RA than pancreatitis let me wrap this part of my life up with this story.

It took me from 2002-Feb. 2007 to get through the worst of pancreatitis. I had millions of pancreatic attacks and many visits to the ER. We couldn’t get it under control and was usually on heavy painkillers like Demerol and Percoset on a daily basis. Morphine had to be used in more extreme attacks. My doc was afraid I would die at a hospital from some other illness and kept me well stocked so I could be my own ER.

I had worked solid through all of this. I run my own company serving many business clients. I hid all of these woes from them at my expense. I did not want to ever be seen as a sick person.

In 2005 the pain became out of control requiring a month long hospital stay and surgery to remove my gall bladder & appendix. Everyday became a struggle and eventually I ended up at a pain management center with dr. G. He was egocentric but progressive and told me I’d need an intrathecal pump put in. BUT I’d need a lot of psychotherapy first as a rule. I dreaded it but submitted myself with what little energy I had left to go to weekly visits. I had managed to grow my business exponentially during this time and miraculously had a very successful business. But the stress was taking its toll on me and eventually I started losing full days to sleep. By the end of 2006 this soon became being asleep 5 days a week. I was unable to leave the bed. I had a great team that ran the office, but it was becoming an unbearable situation. I had gone down to 112 pounds. I looked awful. I felt awful. The only good thing in my life that I enjoyed was Jax.

-Sasha / over and out