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.


Limping Again

4 11 2007

today was one of those kind you wish you could stay in bed but you’ve got to work days. My R.A. Is raging today and I go between limping and having to drive with one arm. Typing’s a nightmare. I just felt so tired I could hardly stay awake.

also it was a day from home because of my 2 doc appts. Stupidly I thought the first was at 10am so I headed out (late of course) rushing. I get there to find out I had it wrong. It was at 215. Geez! So I drive home and get nothing much accomplished. My stack of medical bills and hospital bill calls staring me down.

I headed back the 45min drive for the 2nd time. This one’s the gyn-yay for me! Last time I went was july. I had estrogen levels at the very bottom of the scale and since I’d stopped taking the pill when I had surgery in february I hadn’t had a period. The doc told me to take the pill again anyhow and I’d likely have a period again. She was right.

She reminded me of my 20 pound weight gain. She told me not to even think about a high risk obgyn until I needed to have one. And since I can’t begin to try to have kids for at least one and half years there’s no point now. It’s due to the methotrexate. You can’t get preggers on it or your baby would come out all fucked up looking or worse no soul or something. She’s always nice to me. I need extra kid gloves simply due to my past (childhood was tough). Everything else was fine. I might need minor surgery to remove a tag or leison..but she wants to wait until I’m off the prednisone.

You see, through all of this I would much rather be at work making something of my life. I think it’s such a waste to do doc appts all day-but I learned long ago to stack them up as many can fit in one day.

I raced back to my hood: post office, bank, pharmacy – I won’t have time to get Jax for our first counseling therapy session with new therapist.

we’ve got to get all the way back across town (3rd time today). Basically it’s like going back and forth between albuquerque and santa fe 3 times in one day. Los angeles is huge!

I was so nervous: new therapist. As a maybe couple. In my moment of weakness last night I’d written Jax a letter about how we should date or not see each other for 30 days. I figured this way he could go and meet a woman who could take good care of him. I know it’s nutty because I don’t want to be with someone else. I love Jax – this is just so difficult right now.

Just got out of therapy and finally relaxing a home (very rare indeed). it was only the first session so it was very matter of fact. She did say that we should move back together. THANK GOD!!! I hated Jax being a door down. I’m so relieved and already feel so much better about things. I’m certainly more hopeful if we’re living together. So we made beans on toast – had dinner and I’m about to go to bed. I need to read a business proposal but i’ll have to wait until the morning since I’m wiped. Jax is decompressing and listening to his ipod with stories from Oliver Sachs (author of man who mistook his wife for a hat I highly recommend).

tomorrow is a get things done day. I can’t waste time feeling sorry for myself. I only have 25 days to get this next phase of my project finished and I do need to find more consulting work. I’ve got so many things on my mind.


Day before

I feel less hopeful that this divide can be fixed between Jax and I. He tells me how much he loves me but this illness has taken such a big toll on us. I’m not upset really anymore about the texting events with shirley…but I do think we’re in a totally shitty place. We get along really well – even now…but there is a strain. As Jax puts it “there’s an elephant in the room” which are my diseases. the fact is that I haven’t had the time to repair the damage.

my sleeping meds are working too good and I’m falling asleep fast.


I literally typed this once i felll asleep- no idea what it means. I don’t know any Shirley’s. Hahahaa/

“Remember to write about back from project and subsequent distance. Then shirley texts..”