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.

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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





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 »





CRASH DOWN

31 07 2009

So moving right along with my new style of writing here on my blog  – more personal…more details about my real life and how it goes living with chronic pain.

Yesterday marked the end of the 2nd week of the program I’ve been going to.  Essentially, it’s a psyc ward – but called partial hospitalization/mental health services.  I am not crazy or off my rocker (uh – at east I hope not) but my life had spun completely out of control because I did not know how to deal with living with so many health issues.  There are other reasons including the terror I experienced as a kid (literally terror), but the primary background is this: Jax split up with me one year ago almost.  I was depressed of course .  I had been my primary care taker when things were truly awful, but he had a really tough time transitioning out of that role.  Our relationship crashed as a result of both of our issues.  Then at Christmastime my family couldn’t deal with the reality of my illnesses at all.  They could not se me as a sick person – they couldn’t bear the site of me.  My father, whom I love dearly, has been the worst of the lot.  He is so out of touch with his emotions (and mine) that he was getting irate with me personally as if i could turn my diseases off and just wouldn’t stop being stubborn.  Eventually we had an all out family brawl and I got sent away (Code words for I got cussed out and kicked out by my brother who is totally in denial about my illnesses and he’d rather send me away then deal with it).  Before I spent New ears alone in a hotel room in the Washington DC area I fell to my lowest point where I planned out my death.  I was on the way to the car rental place when Jax called me back.  He talked me off the cliff (not literally, but sorta literally) and I checked into the hotel for a few days.  My brother and Po werent able to deal with me and continued to blame me personally for all of the troubles – it is all my fault.  I brought this on…and that sort of thing.

My therapist told me I had had a mental breakdown and I don’t disagree this time.  It felt cataclismic.  My world crumbled.  The few people on this earth i thought I could always count on had left me on New Years Eve to be alone.  A month later I flew to my folk’s home to confront my dad about the events, but all he could say is how sad he is about my health problems and that I ruined Christmas.

As the months passed I grew closer and closer to the edge again.  Nothing could shake me off the deep depression.  I’ve lost everything due to this disease (chronic pancreatitis) and that disease (Lupus, RA).  Jobs, friends, loads of money, friends, acquaintances, people, strangers, and eventually there was almost no one left.  You must be thinking – WoW!  She must’ve been a real bitch when she’s in pain – but it isn’t true.  They left because they didn’t know what to say, didn’t know how to handle any of it.

Finally, I started cutting myself again like I had when i was 14 years old. Jax saved the day.  He moved an apartment away.  He’s so close yet so far away. I never wanted him to break up with me.  I’m not over it because I’m in love with him and the only thing that stood between us was pancreatitis, lupus, RA, and diabetes.  But eventually that became many things.  My self-esteem was shot (after prednisone adding 50 pounds) and I was not myself.

I know I have to take care of myself first and foremost right now.  I know I can’t be in a relationship right now.  I know it’s baby steps… but I still am in love with Jax.  It’s been 10 months and I haven’t moved on because I believe we have a future together.  Not right now of course… but in the future once I have my life back together and once I am back on track with my dreams and goals.  Once I am back t being me again.  Of course I’ll be different by then, but I see Jax a lot and it always feels right.  So Im focusing on Number 1 right now -me- and it’s not easy.

Love, Sasha xoxoxo





I’VE GONE CRAZY

20 07 2009

hcpsgpic

That’s right. I’ve felt decent for the past 3 days and have used all of my energy doing the following.  If I had this much energy everyday I could actually change the world.  I used to have this much energy and it makes me simply cry to know it is only on rare occasions now.  So here goes:

1. I started the Los Angeles/ Hollywood Chronic Pain Support Group and set our first meetup as August 2nd, 2009@6:30pm – Everyone welcome. Simply signup and RSVP.

2. Started my new Twitter Account for TypeAwithRA.

Join me on twitter and let me know if you’d like to link up.

3. Started a new group on Illness Twitters.  Not entirely certain of how it all works yet – but here is the link in case you are curious.  Visit Illness Twitters

3a. Clearly avoiding thoughts about something important – ah yes – my severe depression/anxiety that started all as a result of getting so sick, my life falling to shambles and facing the possibility that I have to abandon my life’s dreams.

4.  Finished 2 client projects and only have 4 more to go to get caught up.  I also tackle major stacks of paperwork including bills, health insurance/medical paperwork I need to turn in to try to get financial aide for my health insurance.  If it works I will then post a bit about the process I went through, but so far it is not a yellow brick road.

5. Avoided completing my SSI paperwork.   <<Read on for more on getting or not getting on SSI, an assistant, so many losses due to this disease! and starting day 1 at a mental health program for severe depression >>… Read the rest of this entry »





MEETUP LOS ANGELES

12 07 2009

Here’s an article sent to me by the National Pancreas Foundation’s Newsletter about dealing with keeping your job when you have chronic pain: “Protecting Your Job While Coping With a Chronic Illness

The Hollywood Chronic Pain Support Group Logo

The Los Angeles  – Hollywood Chronic Pain Support Group will have it’s very first meeting AUGUST 2nd, (Sunday) at 6:30pm-9pm.  Join and RSVP here.

Today, after getting fed up with the utter lack of support groups for anyone in my situation with multiple autoimmune diseases OR chronic pain – I decided it’s about time I take some action.  My blog is called “Type A” with RA afterall.  And being a good Type A person – I feel it’s my duty.  Not that I have the energy to do this – but I need to reach out so badly that I’ve decided to spend my energies on an actual support group rather than continuing my never-ending search.  Also, I want a place where I can actually talk about forced sober living with pancreatitis, death and pancreatitis, what to eat with any autoimmune disease, what actually helps for lupus, death and lupus, and all kinds of things that really matter to me.  Beyond that, after my last almost meeting I had received quite a number of emails asking when the next meeting would be.  So below I have pasted the exact text that is at this link on the new meetup page.- but from this link you can sign-up to attend.  We’ll welcome any and all out of town guests.   If you run a blog, could you mention this meetup?  Well, I have my first client all week – so I better get on it.   – Love, Sasha xoxo

This is the welcome message I wrote:

Welcome to the Hollywood Chronic Pain Support Group!
Thanks so much for joining- You are truly not alone!

We look forward to having you at our next meeting. We are brand-spankin’ new group, but committed to getting together once a month to talk about our struggles, triumphs and lives.  Please RSVP for our next meeting.

I’m Sasha, your Group Organizer.  I almost wrote “reluctant group organizer” because I live with 4 diseases that often take me down for three days at a time.  I have Lupus, Rheumatoid Arthritis, Chronic Pancreatitis, and Diabetes Type 2.  I have enough energy to get the group started, but as we begin to meet I will ask each member to take on a very small role of participation.  This way it will be more doable and sustainable to meet each month – I know we all need it!

I was surprised or rather, shocked that there are so few support groups around the globe.  I have searched for quite some time to find a support group here in Los Angeles.  I’m guessing that you might have done the same.  The meetings will be structured so that we all get the very most out of them.  Everyone likes to have snacks and drinks, but if you’re like me – you don’t know what you’d say without some icebreakers.  For this reason we will have a guest speaker briefly give their personal story followed by individual sharing on a volunteer basis.

Please Note: I’ve currently closed the group mailing list until we have a member managing the list.  I can only do so much – –

SOME BASIC AGREEMENTS:
1) In order to best serve the group we ask that caregivers do not attend with you – unless you are a caregiver and your mate is not going to be attending our group.

2) Each meeting we’ll pass the hat to donate what we can to the organizers.

3) If you’re seeking anonymity – we will honor your request.

4) We’ll all respect each others abilities.  Each of us may come to be temporarily too ill to fulfill our role/responsibilities.  We’ll all help out.

END ###





AUTOIMMUNE DISEASES GALORE (Part I)

27 05 2009

AUTOIMMUNE DISEASES GALORE (Part I)

Thank you to all of you wonderful readers out there who have sent the loveliest messages to me.  Encouraging words are  awesome, but knowing that behind each email, comment, or call that there’s someone who knows my physical and often my mental pain – that’s amazing.  As many of you would concur  – I would not wish the pain of RA, CP, or any pain of the heart on anyone.  

THE OVERVIEW

My heart and spirit are much lighter today then in many months.  Why the difference?  First, I was pulled off of Wellbutrin (an anti-depressant) and within 7 days my entire outlook felt brighter then it has since November (when I went on it).  I am glad i tried it out – I really did need to be on anti-depressants at the time… but I am shocked at how suicidal it eventually made me feel.  I broke all of the glass in my kitchen, cut up my arm really badly (on purpose), then cut up my legs and other arm when that didn’t seem to do the trick (not to die, but simply to cause myself that numbing pain that all cutters know so well).   It was a nightmare, but for the first time I see it was really a call for help.  I needed help so badly.  I was/am deeply lucky Jax (my ex-boyfriend and best friend) heard all the glass breaking because he came over and helped me clean up.  Then he called my parents and doctors.  Of course I feared he’d want to stay far as hell away from me after that but it’s had an odd effect I’ll write about in a minute.

So this is the state of things now:  I just got diagnosed with my 4th autoimmune disease: DIABETES!  I had pre-diabetes for the past year, but now it is full-blown diabetes.  This is the cause of my never-ending weight battle.  Now I’ll still have to work out 3-4 times a week, but at least I’ve begun moving the scale (and not just under the table).  So here’s my current autoiummune disease list: Rheumatoid Arthritis, Interstitial Cystitis, Hypothyroid, Diabetes 2 and then Chronic Pancreatitis. And I also have the tentative Lupus Dx sitting in the wings.  I always wonder if it all tied to Lupus.  Anyhow, the news did not shake me the way i would’ve thought.  Now I think it is all hysterical.  I mean, it’s literally gotten absurd.  (Read more about my personal life on this subject here)  I’m sure it’s all related in some way that modern medicine can’t decode. 

 

THE DEPRESSION/GETTING HELP

Now, about my severe depression.  I am feeling a lot better, but my Dr’s have told me it is very usual to fall into this trap AFTER the pain is finally under control.   Read the rest of this entry »