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.





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 ###





JUST LIKE YOU

9 05 2009

If you don’t already know me, my name is Sasha.  I have 2 confirmed chronic diseases and possibly Lupus although at the moment it’s been confirmed by some doctors and not by others.  I’ve finally gotten my pain somewhat under control and so now there are long stretches of time each day where  I’m living on the “other” side of constant pain.  It’s a miracle  of modern science.  But, the next things I want to tell you about will never overshadow the pain I was in.  If you live with chronic pain, please know that the following complaint is not meant to take away from what you are currently feeling.  There is nothing worse than chronic, constant, severe pain.  You lose your life and your being to it and you’re not in a place to do anything to fix it – no energy to do anything about it.  So I really do understand how nothing can really ever be as bad.  BUT I’m discovering that life just after chronic pain starts to subside also has its massive hurdles that equally make you feel out of the loop with life.

My chronic pancreatitis pain is starting to creep into the background of my mind as long as I stick to taking my medicines at the right time & also stick to a basic food plan.  But regarding RA, I’ve been off of Enbrel for a month now (by accident and certainly not on purpose) so that writing and typing is VERY painful so I have to keep this short.

I’m trying hard to get my life back together.  One thing that’s come up is the ROOT of where my anger came from and very possibly the root of where my diseases came from.  What I’m talking about is that now that the pain is mostly taken care of – now the reason for the pain is re-surfacing.  My therapist says that it is very normal in chronic pain patients.         You see, I am a survivor of sexual abuse as a child and also extreme violence.   My western doctors feel that this angush may have manifested as these diseases.  I don’t deny that this could be true.  So now that they’ve gotten my pain under control  I’m left with the reasons my body revolted.  I’ve not been very equipped to deal with it so I’ve reverted to old behaviors.  When I was 12-25 I used to cut myself to feel better – a bit of a release.  But now I am 36 and found myself cutting again.  Its an awful situation and totoally inappropriate for someone that has owned a compnay and had a number of employees.  I’m supposed to have my life together, right!!?!!

This has been a really tough time for me. I’ve been totally off-balance in my life lately.  I don’t know when to sleep, when to be awake.  It’s such a mess.  My doctors are all worried as are some relatives and close friends.  My docs have discussed joining a day program with therapists to try to help. I don’t know if my insurance will cover it.  I really need something intensive right now so I am okay with the idea of being checked into some place/facility.  I just want to feel whole again and to get better ASAP.  I never in a zillion years thought I’d wat to get checked into a mental facility.  But then again, I’ve never been this off balance before.

I can’t write anything else tonight except to say I’m going to hang in there and try to put structure back into my life.  But for the moment I am getting solid sleep and that’s so rare that I’m thrilled.      –love Sasha xoxoxox

PS:  For those of you that have been reading for quite some time I wanted to let you know that Jax has been extremely helpful through al of this.  He even swept my place up after I hit rock bottom by throwing every piece of glass in my kitchen.  He then called all my doctors and family to try to let them know what’s going on.  He’s been a ray of hope.  I know it means the likelihood that we’d ever get back together is even more slim, but not only is that not even important right now to me, but Jax knows me better than anyone and is one of the only people that could breakthrough my walls to help me.