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


I’ll Be at My Funeral

18 07 2008

For the first night in ages I am home at midnight alone. Before I was with Jax I spent a number of years single so it’s not a shock or anything, but I’m finding my inability to escape these thoughts of pain unbearable. Normally I paint or write or do almost anything to steer myself away from it-to keep my mind from going there.

My knuckles have a sharp ache from RA. My shoulders have a constant nag from my recent bizarre sleeping habits. I’ve been caught numerous times this month asleep while half in and out of bed sitting fully upright. Also, I’ve been found with my legs straight in the air. I’ve been crouching, kneeling, contorting every which way to escape the impending doom of RA tearing through my joints.

I don’t mind the needle injections of enbrel. It is my only hope at this point to be able to do my type of work. My mom recently told my aunt that I would probably be dead if it weren’t for my passion to work. I have a deep need to be here on this earth.

I’m proud of Jax that he could go away tonight and not worry so much that he stayed home. He needs his own life. Plus, it’s a bonus for me to get his kisses and attention when he’s home. I admit that my work often forces me to ignore that he’s here for several hours each evening.

But I can’t help craving the one thing I can’t have with him right now – sex. We make up for it in many ways with adventures and sundays off from the world, but he still fears I am too fragile, to breakable for that. Now that so much time has passed it’s actually grown into another beast all together. I have chilled out about it and I do know it will all come back together…but I’m impatient and curious as hell and want to know when. Will he ever be able to push me against a doorway again?

Will I ever be able to go without pain meds for a full day? For half a day? (For my pancreatitis not the RA). No one has any idea how long I can keep these demons from chasing me. I long can I hold them off of me? Will I let a moment of humaness get me again and put me right back into the hospital? Haven’t I done my time?

At least my friends and colleagues are past the phase of trying to force me to see their doctors or to see this or that quack. Do they think I’m a lost cause? Or… The reality is that I probably refuse to allow myself to complain about it enough for them to understand the severity of it all. They just see me limp and watch my expressions carefully, afraid I’ll bite their heads off if they bring it up.

I’d love to be able to go to my own funeral. How much did I really hide from them all?
–love, Sasha xoxo

Death, Love, and Living

23 03 2008

ON NEEDING A LOVER NOT A CARETAKER: I’m very happy that Jax has gone out to the movies. Normally he would’ve stayed in with me and I would’ve felt so bad that I had limited his life. He’s working hard on breaking the cycle of being a caretaker-type. He’s off and running and it really seems to be making our intimacy grow. I’m grateful that we are moving into a different chapter. The last thing I would do right now is think about bringing in a baby! That would be a nightmare right now…but time is not on my side on this front and I’m so depressed about it even though I know it’s a waste of time to be so.  (perhaps with my enbrel being out of my body for so long it makes sense that this is my frame of mind).  But when you’re sleeping for so long there is so much time to think about useless matters such as past lovers and past tears spent on them.   I can’t imagine this life without my lover.  I can’t imagine life without being touched in those certain ways that make your whole body tingle and shiver.

Jax reminded me that most men would’ve left me by now – and he’s right even though it was an odd and rather rude thing to say.  Since I’ve been sleeping for about 50 or so hours I’ve had a lot of time to think about the statement and my life.  I’ve had a number of boyfriends leave me because I worked too much, ran my own company and therefore had a lot of responsibilities, or they simply felt I did not need them enough.  In many ways i feel like i’m Maryann in Sense and Sensibility.  She has all these high notions of love but comes to see that a more steady love is far more preferable.  There is deep passion in a steady love; I believe even deeper than the fleeting hot n’ fire loves.
I once had a girlfriend for several months and it is just not the same thing.  I’m sure she would be tender and not afraid to be my lover during this time – but the major difference is that she could make love to me without fear of injuring me worse.

Once, I was seeing a frenchman for a week or so..I had him over for the first time.  We were racing around my old flat naked and having a great laugh.  We had never had sex – but we found ourselves without clothes and pretending to be rulers of my mighty kingdom.  (Read on for my view on death, love, and living) Read the rest of this entry »

RA Has Me Down, Down, Down

23 03 2008

I feel like I am struggling in a very large way just to stay on this planet. I feel very far away from being truly alive – perhaps at a picnic or giggling and laughing. I’m just digging my fingernails into being here.
I haven’t written for a week because as one of my brilliant commenters predicted – I have been fully 100% stopped by my body. It is not my wish or desire and i have fought it tooth and nail…but I’ve been in bed for 50 or so hours with the only ability of sleeping. I’ve gotten up to eat some cereal and to get cheered up by writing and reading for a few moments.

I’ve finally gotten the Enbrel medication sorted out. I took my first dose in ages on Thursday. I’ve been off for so long now -I am so upset since I truly believed that my new life would have gotten started and I would now be on my way. It was 50mg and then I promptly went to sleep and never seemed to wake up. I did finally find out about how to get Enbrel discounted. I can’t believe that the doctor’s office never mentioned it to me!! I also don’t understand why my insurance didn’t mention it to me. I cant believe no one mentioned it to me! This is the scoop: Read the rest of this entry »