ACHY BREAKY BONES

8 09 2009

I just haven’t been feeling like writing lately.  I’ve been trying very hard to change bad habits and to get my shit together.  So, I’ve restarted my company.  I’ve hired new teammates and have gotten things off the ground again.  The first major task: finances.  I’ve got to get my finances back in order.  I’ve really let it slide the past two years to the point of horrible.  BUT – I can’t get on SSI (disability) unless I have my past two years taxes.  I also can’t get any grants for ANYTHING without the past two years of taxes.  It is truly a mess.  I’m still in the hospital progra 3 times a week working hard on unraveling the years of abuse along with my health issues.  I have so much work to do before I can leave the hospital program.  I’m grateful for it – it’s really helping me get my life back together.

I want to go to sleep!  I have horrific insomnia and forgot to take my medicine tonight.  I tried Geodon but it made me overly tired all through the next week.  So now I am trying neurontin. My Dr is also going to raise my dose of Cymbalta in the hopes of getting me above super depressed.   I’m still so upset that I lost what feels like my entire life to this disease (CP and RA and Lupus).  I have more Lupus symptoms and wondering why it’s still not showing up in my blood work.  UGH!

So last item for the day:  I got this awfully sad email/comment from a reader.  It’s so awful because her husband is only 29 and has chronic pancreatitis – but is still actively drinking.  I couldn’t imagine drinking alcohol with pancreatitis.  My thought: it must not be hurting him as much as mine hurts me.  It’s impossible to have pancreatitis a bad as I have it and even conceive of drinking alcohol.  BUT maybe the difference is that I don’t have pancreatitis from drinking… mine is idiopathic – meaning no reason found.  Well, that’s illogical but…

So it got me curious – Does drinking make RA worse?  How about Lupus? I would imagine it must – but since I don’t drink i can’t say one way or the other.  So I’m setting up a poll to ask exactly this question.

That’s it for me for he night!!  Thank you to all my readers.  May your bones and joints not hurt as much as mine do right now!!  Love, Sasha.

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I’VE GONE CRAZY

20 07 2009

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That’s right. I’ve felt decent for the past 3 days and have used all of my energy doing the following.  If I had this much energy everyday I could actually change the world.  I used to have this much energy and it makes me simply cry to know it is only on rare occasions now.  So here goes:

1. I started the Los Angeles/ Hollywood Chronic Pain Support Group and set our first meetup as August 2nd, 2009@6:30pm – Everyone welcome. Simply signup and RSVP.

2. Started my new Twitter Account for TypeAwithRA.

Join me on twitter and let me know if you’d like to link up.

3. Started a new group on Illness Twitters.  Not entirely certain of how it all works yet – but here is the link in case you are curious.  Visit Illness Twitters

3a. Clearly avoiding thoughts about something important – ah yes – my severe depression/anxiety that started all as a result of getting so sick, my life falling to shambles and facing the possibility that I have to abandon my life’s dreams.

4.  Finished 2 client projects and only have 4 more to go to get caught up.  I also tackle major stacks of paperwork including bills, health insurance/medical paperwork I need to turn in to try to get financial aide for my health insurance.  If it works I will then post a bit about the process I went through, but so far it is not a yellow brick road.

5. Avoided completing my SSI paperwork.   <<Read on for more on getting or not getting on SSI, an assistant, so many losses due to this disease! and starting day 1 at a mental health program for severe depression >>… Read the rest of this entry »





JUST LIKE YOU

9 05 2009

If you don’t already know me, my name is Sasha.  I have 2 confirmed chronic diseases and possibly Lupus although at the moment it’s been confirmed by some doctors and not by others.  I’ve finally gotten my pain somewhat under control and so now there are long stretches of time each day where  I’m living on the “other” side of constant pain.  It’s a miracle  of modern science.  But, the next things I want to tell you about will never overshadow the pain I was in.  If you live with chronic pain, please know that the following complaint is not meant to take away from what you are currently feeling.  There is nothing worse than chronic, constant, severe pain.  You lose your life and your being to it and you’re not in a place to do anything to fix it – no energy to do anything about it.  So I really do understand how nothing can really ever be as bad.  BUT I’m discovering that life just after chronic pain starts to subside also has its massive hurdles that equally make you feel out of the loop with life.

My chronic pancreatitis pain is starting to creep into the background of my mind as long as I stick to taking my medicines at the right time & also stick to a basic food plan.  But regarding RA, I’ve been off of Enbrel for a month now (by accident and certainly not on purpose) so that writing and typing is VERY painful so I have to keep this short.

I’m trying hard to get my life back together.  One thing that’s come up is the ROOT of where my anger came from and very possibly the root of where my diseases came from.  What I’m talking about is that now that the pain is mostly taken care of – now the reason for the pain is re-surfacing.  My therapist says that it is very normal in chronic pain patients.         You see, I am a survivor of sexual abuse as a child and also extreme violence.   My western doctors feel that this angush may have manifested as these diseases.  I don’t deny that this could be true.  So now that they’ve gotten my pain under control  I’m left with the reasons my body revolted.  I’ve not been very equipped to deal with it so I’ve reverted to old behaviors.  When I was 12-25 I used to cut myself to feel better – a bit of a release.  But now I am 36 and found myself cutting again.  Its an awful situation and totoally inappropriate for someone that has owned a compnay and had a number of employees.  I’m supposed to have my life together, right!!?!!

This has been a really tough time for me. I’ve been totally off-balance in my life lately.  I don’t know when to sleep, when to be awake.  It’s such a mess.  My doctors are all worried as are some relatives and close friends.  My docs have discussed joining a day program with therapists to try to help. I don’t know if my insurance will cover it.  I really need something intensive right now so I am okay with the idea of being checked into some place/facility.  I just want to feel whole again and to get better ASAP.  I never in a zillion years thought I’d wat to get checked into a mental facility.  But then again, I’ve never been this off balance before.

I can’t write anything else tonight except to say I’m going to hang in there and try to put structure back into my life.  But for the moment I am getting solid sleep and that’s so rare that I’m thrilled.      –love Sasha xoxoxox

PS:  For those of you that have been reading for quite some time I wanted to let you know that Jax has been extremely helpful through al of this.  He even swept my place up after I hit rock bottom by throwing every piece of glass in my kitchen.  He then called all my doctors and family to try to let them know what’s going on.  He’s been a ray of hope.  I know it means the likelihood that we’d ever get back together is even more slim, but not only is that not even important right now to me, but Jax knows me better than anyone and is one of the only people that could breakthrough my walls to help me.





PAIN’S HEAVY PRICE

19 04 2009

SEVERE DEPRESSION-THE ALONE-NESS

It’s not the sort of thing that I like to admit is happening. It’s not the sort of thing anyone would want to admit.  It’s definitely not party conversation.  2 days ago my doctor talked to me about possibly putting me in the hospital  – not the regular hospital – but a facility…As in getting committed.  All I needed to say was one extra sentence or actually word- and I would be there right now.  All I needed to say was the truth…”Have you thought of harming yourself or others?”  How do you answer that question when I’ve even looked up possible locations to drive a car top speed into a concrete wall?  How do you answer that when you’ not only thought about it, but even gotten to the stage of trying to research if the airbags popping out would prevent me from being dead.       I don’t want to be dead, nor would i ever do this, but I’ve thought about it.

Pain comes with a heavy price.  Most people don’t understand long-term pain.  they always say stuff like “get better soon” or “i hope you’ll be feeling better the next time I see you” or they go on and on about their healer or raw foodie friend that cured their lupus completely simply by eating a raw food diet.  They seem to think I want to have a chronic disease.  They seem to think that it’s in my mind   – and that this is the reason for my physical pain.

The toll is much larger than just physical pain.  It’s much larger than absolute alienation from friends and family.  It’s alone-ness that I never could have imagined.    All of the hours I spend pretending to be normal are wasted hours.  All of the hours back and forth to the doctor is time rolled up and tossed away.  Most of all it’s the alone-ness I am left with.  Some of my friends started this journey with me and only last a week.  Others lasted several years, but now that I’m going into my 7th year of chronic pain I feel as if everyone has left.  Everyone is over it.  My doctor’s are there  – and that might be the only thing keeping me from completely breaking down.  Two of my doctors stepped out of their uniforms this week (figuratively speaking) and hugged me, grabbed my hand, felt my real pain from all of this.  It was the most human thing I’ve seen anyone do in such a long time.  it did change my mind about wanting to stay here.  they both urged me to remember that this depression is temporary.  It doesn’t feel temporary.  I feel like I’ve been here for a very long time.

I was thinking about the steps that led to my big crash into ultra-severe depression.  The main one was over the holiday when my own family couldn’t take it.  My own family left me.  We talk on the phone now, but I know when it gets really hot that they can’t handle it- and i’m the first to go.  My dad couldn’t take me being in pain and so instead of having sympathy for me he threw me out. , all because I had to work over the holiday while he felt I should be resting.  My brother disowned me because I was in so much pain after playing soccer with his soon and I complained about them having nothing I could eat for breakfast.  I thought a lot of people got grumpy at breakfast-but with my physical pain on top of it I’m a “complainer”.  And no one comes to my defense anymore.

I’m also now open game for rude and hideous comments.  An acquaintance I know took me to a concert last week but spent the whole time telling me how fat i’ve become.  I’m not actually fat at all in any city outside of Los Angeles.  I’m average after the prednisone, but not fat.  She went on ad on about how she would kill herself if she got as fat as me.  Naturally i will not ever spend another second with her, but the damage was already done.

The part that is still the hardest is that Jax left.  I’m getting over it – I can feel that – but I’m still not over it.  I don’t know if I ever will be.  Right now it doesn’t feel possible.  Mainly because it doesnt feel possible that anyone will ever like me again.  I am simply exhausted and can’t think of good things right now.  Facebook has brought some good old friends into my life which does give me hope that at least I might have friends in my future, but right now the ones I have in LA can’t be bothered to spend any time with me.  LA people tend to be overly selfish.  (Not the ones born and bred here btw – just the transplants).

I’m ready for good things to come into my life.  I am open to all good things coming into my life.  I invite all good things to come into my life.  In the moment my depression is in the passenger seat.  I just want to go to sleep on the couch again – I’m not into sleeping on the bed.  it has too many memories.

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.

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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.