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.





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





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.





WORLD IS BIGGER

9 08 2009

So from time to time you may notice I mention my ex Jax quite a bit.  That’s partially because he’s my neighbor one apartment down (where he moved when he split up with me), also partially because I’m still in love with him, also partially because he’s a huge part of my life.  BUT I want you to know I think about a lot of things and Jax is only a sliver of that time…okay – maybe a large chunk but…  He’s been incredibly supportive of me through this entire illness and now that I’m in the mental health program he’s invested a large amount of time making sure I’m good.  Luckily though I do have other people in my life….but not very many any more (okay – in LA maybe 3 total).  Almost all my former acquaintances ran off when it became obvious I wasn’t going to get better right away.

There’s a saying that I even heard yesterday that people give to a mental health patient meaning the best ,”you have a mental illness…and you may feel all alone, but if you had a physical illness people would be there for you so there’s no reason not to expect the same”.  It infuriates me because it isn’t even true.  Most everyone disappears.  It’s so mentally painful. 

Right now I need friends so badly.  It’s… Read the rest of this entry »





PUMP FOR PANCREATITIS

8 08 2009

 

Letter to Sasha: Hi,  My wife is currently living with Chronic Pancreatits and has asked her dr. about a pump, but he seems resistant. What did you have to do to get one? From your searching, is there anything that you could suggest that she needs to do to get it quicker? (btw, does this pump the medicine directly into the pancreas; near it?)

Thanks,
Glenn / Submitted on 
2009/06/29 at 11:34pm

From Sasha: Dear Glenn,

I’m so sorry to hear about your wife’s CP!! I am sure many people are curious to know the great questions you’ve asked! First, the intrathecal pump was surgically “installed” by my pain management doctor. He had to try less invasive things first such as a celiac nerve block using an injection of botox to numb the area. It worked a tiny bit (although I didn’t think so at the time – only upon reflection did I realize it had helped. Then he did a spinal stimulator next which is a electronic device that vibrates and the goal is to eliminate the pain by altering how your brain receives the signal. That didn’t work because it had to go to high to work which then caused my entire body to feel electrocuted at all times. Finally, after a year of intensive psychotherapy that my Dr required I do before installing the pump, I was taken into a brief surgery. The Dr. puts the Medronics-brand pump in your abdominal region on either the right or left side. My torso is super short so my pump hits my bottom rib and my top hip. It can be uncomfortable at times but NOTHING like pancreatic pain.

The intrathecal pump then has a catheter… Read the rest of this entry »