INSOMNIA AND JAX

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

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

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

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

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.

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OLD BONES

If you are new to this blog we urge you to check out the about page with the scoop on Jax, Sasha, and her list of health issues that are not allowed to be considered a 3rd party of their relationship.  Er…well… former “relationship” and currently simply relationship.  (Sasha is hopeful that his will change sometime in the future but for the moment she is taking care of herself).   Join us on twitter.com/typeawithra

 

All i’ve ever hoped for has crashed against the rocks of my disease.  I’ve lost everything in it’s relentless cycle of pain.  When I hear shrieking I fear it came from inside of me.  I let out a moment of the pain.  But then I realize it’woms an shouting at her husband behind their door.  How will I have the energy to pick up the pieces that once were my life?  How will I ever explain that my life was meant to be so much more?  How can I still try for it – my dreams, my goals – and weather through this storm?

 

I’m 4 weeks into the hospital program and I’m finally getting better (mentally that is).  I still have massive insomnia even with sleeping pills.  I hate the idea of being on so many medications.  My mom has Lupus also and she just got out of the hospital for severe potassium deficiency. The Dr’s think the combination of meds she was on might be the culprit.  Have a chronic illness is so exhausting!

 

So, below I’ve pasted in the most shocking piece of info I’ve ever learned about Lupus.  The state of New Mexico, where I was born and raised, has TWICE the national average of Lupus.  TWICE!!!!  That tells me that Lupus might be partially caused by environment.  Right??!!  Go ahead and read on about it.  I’ll try to give you more info about this as it comes in.

Love Sasha xoxo

 

Lupus Affecting New Mexico

A statistical study was done by the University of Connecticut Health Center on mortality ratios for systemic lupus. This map shows that a cluster focusing right around New Mexico that has 2 TIMES the national average! The need is great in New Mexico.

Read the article on Lupus in New Mexico.  I find it thin on info and very thin on WHY the stats are like this.  What’s in New Mexico that causes Lupus?  I lived there for almost 15 years, but so did my best friend and her family and they have no issues.  Why do we?? We only lived one block from each other.

If anyone has more info on this can they please send it over??? Thanks!

 

 

WORLD IS BIGGER

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…

CUTS THROUGH MIDDLE

Pancreatitis is an evil and viscous disease.  It destroyed me for so many years and I’m only 36 now.  I get loads of emails asking if a certain pain can be pancreatitis. I always want to ask “has it ruined your whole life? Has it made you keel into a ball for thousands of hours?  Does it activate right after eating?  Does it cut from the center of your body as if someone stabbed you with their bayonet and then left the bayonet in and then poured turpentine on the wound (front and back)?  I’ve never experienced anything more painful in all my life.

Truth is I don’t know if you have pancreatitis.  I hope you don’t.  The first time I ever had a pancreatic attack it felt like something exploded inside of me.  My own personal Hiroshima.   I’d never wish it on any enemy.  Managing it took me a long time to learn.  I have to avoid anything overly tasty, seasoned, spicy, acidic, too big (little bites better), butter, anything with alcohol, too much food eaten in one meal, high fat foods (absolutely not bacon), foods that cause gas normally (broccoli and loads of beans) and sometimes none of these items are done and I still get massive pain.  

 

Right now I am trying out a fake beer to see if it causes pain.  I try hard to only test out new foods on weekends when I have a little down time.  Fancy restaurants are the worst offenders.  The chef gets pissy about making food without alcohol or butter.  Alcohol does not all burn off as many claim.  I have t steer clear of it all together.  

Hopin this has been helpful,

Sasha xoxo

PUMP FOR PANCREATITIS

 

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…