HIT THE WALL

20 01 2010

I haven’t written in a very long time.  I go through phases where I simply have no energy to write.  Also, I go through long phases where I feel as if keeping a blog is absurd and only helping myself.   Then, I read the reader comments you all post on this site and I feel much better and inspired to keep my “log” going.  A “log” of my hurdles and triumphs.  I was also waiting for a “good time” to happen in my life for a longer stretch than 2 days, because I get exhausted writing about the things that are wrong with my life.  One of the only reasons I’ve stayed alive is because of my need for optimism and rejoicing.  In fact, until I experienced true, real, honest to goodness massive depression last year I felt I wasn’t “allowed” to be down.  I already have enough cards against me with my poor health I don’t need the extra social deterrent of depression or complaining.  I’m a “never-give-up” type of person – not a complainer.

The actual reality is that I am extremely grateful.  I have a ton of health problems that have drastically altered the course of my life, but after watching the images of Haiti and remembering Katrina, I think how awful it is for me to complain about my ongoing health issues.  BUT the difference is that those situations are immediate crisis, death in some cases within days rather than what sometimes seems like a very long and drawn out death sentence.  Either way, living with a chronic painful illness is horrific (not to take away from the many people in these crisis that will now also have life-long health issues as a result of the crisis…). For example, recently I sadly discovered a colleague of mine is dead – I found out from Facebook because she lived in New York and I hadn’t bumped into anyone in her circles.  So I read how she died – A very short sickness and then – boom – she’s dead.  That’s what I don’t understand. Why have I lived through some extraordinarily bad scenarios and also why has it been so long and drawn out?  It has required every drop of energy that could ever exist in my body to stay alive – but when my colleague is sick for a week only – she’s dead.  I used to love to girl talk with her (my dead friend).  She helped me out in ways that I’ll never totally know.

I’m torn between feeling awful for my dead friend all the way to feeling like I’ve been cheated out of death myself – In many ways I feel I should be dead by now also.  Of course that is absurd, and I waffle back to feeling extremely grateful that I am alive.   But the reality is that I’ve been so deathly ill so many times that it just doesn’t makes sense to me.  Regardless, her life was important to me.

Last year I had such severe depression due to my many health problems that I had hit a wall.  I found that I could not work , could not think, and that I had also lost all of many of my ” friends” because of my illnesses.  I checked into a 5-month long partial hospitalization program in the hopes of getting my life somehow back on track.  The program was part of the mental health department of a very good hospital).  There, I was told I have severe PTSD – post traumatic stress disorder (I had a very tumultuous and violent life before 21 yrs old).

The program ended for me in November and I met all my goals except for one.  It worked well for me – I was able to rebuild my company from ground up.  I re-opened the doors, took on clients again, brought on a new assistant and 9 trainees.  I’m finally working hard on the projects I had crumbled over in the Spring and Summer.  I at least got all of that back on track. I wasn’t able to bring in enough clients to grow my company to anything close to its former size yet, but I’m working on it.

In truth, I don’t even know if it is possible for me to continue my job.  Even though my work is my true passion, my body is making it impossible to do.  I am fighting to continue my work, but I can see both scenarios happening (1)  me continuing to build my strength and fighting against all odds to continue doing my company & job. (2) me not being able to do the job I’ve always felt I was put on this earth to do.  So facing the reality that I might not ever be able to my work in the same way again is beyond heartbreaking and crushing.

There are so many things I still can’t get back.  First, my Jax.  Even though we are best friends now and see each other 2-3 times per day, I have not been able to get him over his fear of me getting bed-ridden again like I was before I got my medical pump put in (for chronic pancreatitis).  He’s still shell-shocked about all the times I couldn’t walk (from RA).  The one thing I didn’t accomplish in the “program” at the hospital was that I still haven’t gotten an appointment with a proper nutritionist.  BUT I have gotten a disabled placard finally and am applying for SSDI (disability insurance) on Thursday via a non-profit organization’s help. This is the key to my entire future.  I can only work very limitedly so it is critical. Luckily, over 2009 I found many resources in Los Angeles to live with chronic health issues.  Another resource is that I got approved for a disabled van services so that I can take my sleeping meds and not be on the road.

I do feel like I am past that wall, but the new one is the fear that no mate will ever want me.  Who would be crazy enough to want to put up with all of my health issues theat often cripple my life?  Who would want to stress about whether I should give up on the idea of kids forever or try to be cool with the concept.  So much to have running through my head!!  I hate it!! In 2009 I’d often say “I want my old life back!!”   But now I ‘m way past that though

– I’ve got too much going for me – too much I’ve rebuilt to give up or go back now.  But the one that’s still the hardest for me is not being “with” Jax.

Anyhow, I clearly have tons more to write about so I’ll just have to check in tomorrow and try to get all caught up with what’s been happening.

Lv, sasha xoxoxo

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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.