VAN SERVICE

9 03 2010

I am trying out this new technology… Updating my blog from my mobile phone. If it works well then I might be able to continue doing my blog. A few months back I broke my laptop computer and so had to stop doing the blog for awhile.

So… Van service…I haven’t been allowed to drive since December. The reason: I went for a sleep doctor consultation and the Dr freaked out about my questionnaire. What a prick! I simply wanted him to know my insomnia was fierce. It hadn’t occurred to me that the Dr would be able to ask the dmv to suspend my license – in the same day. No test as of this date. The Dr didn’t even care to help. He only cared to make it a massive hardship on me. It was obvious he thought I was a druggie based on my list of meds.

It’s a long process to get my license back. I’ve been very good about not driving at all. I’m on a waiting list for a new Dr’s sleep study. I want to solve this horrible insomnia.

My new list of meds is horrific. It includes methadone! (the usual med I take is levorphenol but the manufacturer is behind so I got prescribed the closest relative. The list is very long including enbrel for RA, methotrexate for Lupus/RA. And even percoset for chronic pancreatitis. There’s synthroid and metformin and so many others I’m on.. And being put back on wellbutrin. No sure I want to be on a weight gainer so may not take this one.

Point is that I found out LA has a van service you can take if they deem you disabled. I feel very lucky I passed that test. I am officially disabled. The van is about $2.25 per way. Not bad at all for door to door service!

So if you have lots of med issues like me..you might want to check out the van service in your city.

Checking out. Goodnight.
Xoxo sasha





INSOMNIA

29 01 2010

All day I am fighting this intense exhaustion.  All night I struggle falling asleep.  The sky is overcast with a brilliant orange glow.  I want to go next door and climb into Jax’s bed.  I could always claim that I was sleepwalking.  The LA night is restless.,  Helicopters, police sirens, and food in the fridge are screaming at me.  I’ve been off of Enbrel for 2 months.  It’s been insane to feel my disease crawl back through my veins, my joints, my blood.  My feet hurt in ways I didn’t know was possible.

Originally, I got off Enbrel to find out if it was the culprit in m sleepwalking.  That turned into forgetting to re-order it which evolved into delivery to the wrong address.  Now, the full-blown effects of RA are coursing through my body.  The Methotrexate does little to nothing it seems.  Every morning now I can feel the effects of RA wearing my joints down, wearing me down, eating away at my life.

What a horrific disease.  When it is contained, I forget how badly it was destroying me before.  For 3-4 hours every morning I can’t move, think or function.  I’ve never felt the exhaustion of life so vividly.  And I will say again how absurd the name is.  The word arthritis conjures up some lame issue very old people have with their joints.  If I were in charge of “things” the first thing I’d do is give RA a proper name.  One that brings to mind utter untreatable agon and helplessness.  Now I have forgotten how long it takes to feel the beneficial effects of Enbrel.  I think it’s about one month.  I can’t wait. If I wasn’t a freelancer then I would’ve lost my job because of the disease’s evil nature.

Jax and I have a cuppa tea almost every night. He’s very kind that I limp a lot and is always helpful.  Time will tell if Jax changes his mind about us getting back together, but each day I feel it slipping farther away.  Time creates more time.  I hate when people say “at least you have our health”.  I don’t!!!!  I don’t have it in any way.

love sasha xoxoxo





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





INSOMNIA AND JAX

27 10 2009

It;s no shocker that I have insomnia.  My doctor has actually given up on me.  I am going to confront him tomorrow about this issue.  Just because I have 4 chronic diseases is no reason to tell me that “some people just have to live with it and find alternate times to sleep”.  Bullshit!  I don’t believe that’s the truth!  I think he’s just totally given up on me.  I’ve tried so many different types of sleeping meds but after 2 car accidents I am very concerned.  The Dr’s said that the meds I already take for my health problems (mainly chronic pancreatitis) are conflicting with the sleep meds.  So does that mean we should throw the towel in and give up???  I have been sleepwalking for just over a year now and find it all so odd. Is it due to any of my medications?? enbrel? my intrathecal pump?

I am so tired of doctors that give up on patients that confuse them.  I’ve never said anything odd or strange in any of our appointments.  He’s luckily convinced that I am not bi-polar.  He IS convinced that I have sever PTSD – post-traumatic stress disorder from a very unlucky childhood/adulthood  that has been riddled with violence from other family members.  It’s so easy for the Dr’s to say that this is the cause of all of my health problems.  BUT this doesn’t solve anything.  In fact, it perpetuates the saga of not getting proper treatment. Plus I have no clue what to eat now that I’ve got CP AND diabetes.  Is there a list of foods to eat and to stay away from if you have BOTH of those diseases?  WHY is my body falling apart??

I’m so frustrated today and know that I’ve got to have my game-face on tomorrow.  Wish me luck!  BTW I’ve had a few emails from you readers out there that are going through a similar journey with multiple-chronic health issues and insomnia.  It is nice to know I am not alone  –  but the truth is that right now in my chair outside on the patio getting bitten by mosquitos – I am all alone.   I have to solve this issue almost alone.  (My Jax has offered to help if I need to call him in the middle of the meeting).

 

So one last note here- this one is about Jax, who is currently my ex-boyfriend – *sigh*.  Last weekend he told me that he doesn’t think we will ever get back together because he can never go through the trauma of my health issues the way he did when we were together.  BUT now he lives one apartment away and he sees the full picture now.  For some reason he thinks there is some secret pain that I expose when i am on my own.  There’s nothing I can do to convince him otherwise except to live my life to its fullest.  I want to become that old me again – that thin awesome go-getting me.  I am close to the go-getting me again – once I decided to live again and stopped begging to die.  I re-started my business and re-hired a new assistant last month.  I brought on interns and am kicking some serious ass.  BUT I am exhausted and have no time for anything again.  I can hardly keep up with the things that are urgent.  I’m massively behind on most everything.  I haven’t eve started on getting my SSI/SSDI paperwork together. UGH!! But back to Jax – -

 

Yes, a year has gone by since he split up with me and I am still in love with him.  We do so much together I don’t know how I wouldn’t be.  He’s on my team and in my court.  he still goes to critical Dr appointments with me.  I am moving on… but since I don’t know if I’ll live long or short – what should I do?? Give up and find another wonderful mate? Some say I should… others think it is better to continue loving the one mate that has always been there for me – and the hope is that he’ll eventually come around.  I’ll just say that it’s not looking good right now.  Jax seems pretty certain we won’t ever be a couple again.  I just said “your loss”!  And I mean it too.  He’s worried that I am too fragile.  Too fragile!!!! Not even close!  Think about all of the hardcore energy I’ve had to maintain in order to get my career back on its  feet again.   So I’ll focus there- on my career for the time being and hope I live long enough to see how this all plays out.

Love, Sasha  xoxoxox  Gonna try to sleep.





LA/Hollywd 11/14 Support Group

27 10 2009

Click on link to sign up:
http://www.meetup.com/The-Hollywood-Chronic-Pain-Support-Group/

The Los Angeles/Hollywood Chronic Pain Support Group

Meet someone JUST LIKE YOU.
WHEN: Saturday, November 14th, 2009 from 11am-1pm.

WHERE: Meeting place is 2 Blocks from Sunset and Vine.
Come make new friends!

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. For us, it is important to have a safe monthly gathering place for anyone suffering from chronic pain. We share our triumphs, hurdles and pain.

We encourage attendees to share about how they soothe themselves during flare-ups, how they manage work and play, and how they juggle the body and mind in the hopes that we each can find new ways of getting out of pain for longer periods of time. Our main purpose of meeting is simply to have a place to discuss the REAL issues we each face.

 

In an intimate setting we’ll share our experience, strength, and hope with one another. We’ll discuss the hurdles we really face of living with chronic pain. The frightening reality of intimacy, the reality of relationships, managing a job or boss, and positive ways that we’ve found to cut down on our pain. The group’s focus is to discuss issues we face living with chronic pain for any reason – some my have Lupus, others may have had an injury. I have Lupus, Rheumatoid Arthritis, Chronic Pancreatitis, and Diabetes Type 2.

Hi! I’m Sasha, and I started this meetup because I’ve been wanting to be a part of chronic pain support group for a very long time. I seem to always miss the meetings in my area or the meeting seems to touch on items I’m not really interested in–so I’ve decided to start one.

The meetings are currently being held at in an artist loft’s building in Hollywood. The meeting format is in an intimate, safe environment,





CHRONIC PAIN SUPPORT GROUP

28 09 2009

We’re having our next chronic pain support group on October 10th, 2009.  All are welcome to attend.  All you need to do is sign up at our meet-up groups page and then RSVP for the event.  This time we’re doing it on a Saturday morning at 11am so that more people can attend.  We hope to see you there!   – it’s a brunch potluck so bring what you like.  visit our meet-up website: http://tinyurl.com/hcpsg

OCTOBER 10th – Saturday at 11am.  Support Group meeting located in Hollywood.





ASK MY BED

28 09 2009

I’ve been feeling much more positive lately.  I’ve been getting great help for my severe depression through one of the inpatient hospital programs here in Los Angeles.  If I wasn’t in LA I honestly don’t feel I would be getting as much help.  My whole life fell to pieces in September of 2008.  My illnesses began to overpower my world.  I lost the ability to stay on top of everything.

RA still kicks my arse and my joints hate me when I forget to take my enbrel.   I even have reminders in my phone so that I don’t forget.  Pancreatitis is getting a little better because I’ve been making my lunch and taking it to the hospital program.  Now what I really need is time to look for a job.  I hired two people to help me with my taxes.  I can’t apply for disability without the past two years of them… and I am so behind – it’s pathetic.  I’m not sure how my whole life fell apart, but I think that I got so overwhelmed with everything that I couldn’t keep up anymore.  It was an evil combination of anxiety and depression.  Apparently, they both hit frequently together.  I fell behind on every single thing. I lost my self-esteem, my confidence, and any good thoughts I might have had.

I’m starting to put it all (my life and office) back together.  I’ve got some interns on top of my helpers.  In order to deal with my illnesses AND my office, I am forcing myself to nap halfway through the day.  I can’t keep up like they can.  I used to be able to work around the clock, but those days are gone.  I am starting to chip away at my newly diagnosed Diabetes type 2.  There are so many food limitations.  I am hoping that by easing one disease down that perhaps I will help out the RA or Lupus at the same time.

I’ve really enjoyed my reader letters lately.  Thank you so much for thinking of me and sending such nice messages.  I hope to return the favor someday by writing nice things back.

I’ve been thinking a lot lately about writing a book about my journey though these autoimmune diseases, but i’m not yet sure of the best angle.  Does anyone out there have suggestions of the types of books you would read on the topic?

My hand is in too much pain to keep typing.  Love you all, Sasha xoxo








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