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



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 – –

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 ###


1 06 2009

Thanks to the readers of this site – I share your journey with you.  Many of you stumble on the site looking for answers to questions like how to get through another day under enormous pain from either Lupus, RA, or CP.  You can search the site for terms or keywords I use in any blog post simply by entering that word in the search bar on the midway-upper right.  Some of you want to know my own journey living with so many autoimmune diseases and I’m sure you’re hoping to find some key to unlock the mystery of how to get rid of the pain.  Some of you might be looking for solutions to get on SSI or other financial aid.  Hopefully you’ll find that this site offers some hope to you or your loved one.  I’m currently in the management phase of my pain control.  That alone is a miracle.  I finally have my pancreatitis at a liveable level thanks to my intrathecal pump.  I don’t mind having a big hunk of metal in my body – how could I mind something that has taken away that deathly pain?  I’m also lucky that I have world-class doctors here in Los Angeles.  I think i’d still be in all kinds of pain if I didn’t live in a major medical city.  If I didn’t live here then I think i would’ve found a way to travel here to at least get a great doctor several times a year.  Doctors outside of LA, NYC, and Houston tend to default to the response “you must be crazy” before bothering to find a reason.  

I;m in the midst of making peace with the fact that I will never be able to have a chid from my own body.  I’m 36 now and dread that reality – but it would simply be far too dangerous.  It’s so sad though… I never thought the option would be out of the question, but now it really is.  Even if a high risk obgyn said i could do it – I now know that Dr’s these days still dont see the whole body – – they just see their individual parts.  ..And that makes it even more dangerous.  

Many of our readers are curious about prednisone.  I’ve written a lot on this topic so definitely do a search to find al the posts on that topic.  One reader was curious if gifts work for doctor’s offices- YES  – absolutely.  I often give gifts at holiday times to the ones I see the most – but remember to give something fun and healthy because everyone gives sweets and it’s a real drag for them to get more.  

One reader wrote in about being so angst with pain that they felt suicidal.  If you read back over the past 6 months of my blog you’ll definitely read up on my experience with being severely depressed.  Just remember that life always changes – even if it seems impossible to you right now.  When i hit rock bottom recently I couldn’t fathom anything was going to change – but literally only one month later I’ve made new friends, started going to a new recovery group for people with depression & anxiety, and now I even have my datebook as filled up as I want it to be!  I never thought I’d get out of that depression and am amazed at how quickly everything changed.  

(READ ON FOR MORE READER QUESTIONS ANSWERED on RA & CP) Read the rest of this entry »


25 09 2008

Yep, I changed the “look” of my site.  I needed a change so i also cut off 3 inches of hair!  Breaking up is “fun”!!

Before reading this post you can read  “About Us”,
Part 1 of the Break-Up
; or Part 2 of the Break-Up.

Today is Day 4 of being split up with the love of my life, Jax.  The only thing making today any easier then Sunday is amazing friends and family who have helped me so much to get through this type of pain. I’ve had some time to try to understand why Jax wants to break up.  Essentially it boils down to my two diseases (RA & CP).  Jax became hyper-affected and overwhelmed by any medical issues I have to deal with.  He said he’s been unable to drop the caregiver role.   This has massively affected our sex life because he feels I am too fragile and on Sunday said, “I don’t think of you as a sexual person” which is odd since upon breaking up most of my past boyfriends have said that part of our relationship’s “been amazing”.

Please don’t think of Jax as a jerk – he’s not at all.  He’s stuck it out with me through the past four years through thick and thin. Three of those years I was terribly sick until I got my intrathecal pump for chronic pancreatitis last February.  I can’t stand the idea of him leaving right now when everything is finally on the up and up.  I’ve hit my lowest life points these past few years (having nothing to do with Jax) and they’ve taken their toll on him.

It’s certainly true that my diseases affect my relationship in every way possible.  I get tired pretty easily because I’m always fighting fatigue from RA and hypothyroidism.  The sex issue leads right into the pregnancy issue.  My doctor’s have told me that my only window of opportunity to safely get preggers is next fall (’09).  This has put a lot of stress on Jax and I.  This was also a  contributing factor in him feeling overwhelmed.  The truth is that I don’t want to have a kid yet next fall.  Right now, I’m not ready in anyway.  But that might very well mean that I have to give up the possibility of having a child all together.  I think I’m okay with that.  I only went gung-ho to have a kid next fall because I didn’t want to risk not having a kiddo with Jax since I know he wants to have one.  Jax even said he was “terrified” of me being pregnant.  He said he’d be racked with guilt for eternity if something bad were to happen to me through it.  He also said that he’s not ready to have a child.

Jax is unsure and confused about his plans which I’m actually quite grateful for.  He hasn’t thought about any of the details of splitting up. This might make it possible to have hope.  We share everything including the apartment, car, our company, furniture, jackets, food, and time.  We were spending lots of time together.  It’s going to be so hard to navigate these next few weeks with a new daily game plan.  I’ve cried and cried about it, but in front of Jax I’m staying strong.  At least he’s let me talk this break-up over with him so that I can try to understand.

One benefit of all of this is that i’ll be able to focus on this big project I’ve been working on.  I just have to remember to keep it balanced with time so that I don’t get sick again.  I have a horrible habit of doing too many long work hours and my health always suffers for it.   I also have to be careful that the pain of the break-up doesn’t compromise my health.  That has also happened in the past.

I’m not exactly sure what to do.  Do I try to quickly move on and get over the idea of Jax as soon as possible? OR do I remain hopeful that he’ll realize he can’t live without me?  I know I need to give him the space he needs right now.  My plan is to not talk about our relationship again unless he brings it up.   I sincerely hope he sees that this change is nuts.   I hope he asks me to get back together before I change my mind, move on, and close the door on him for good.  Who knows what will happen!   I’m frightened, excited, sad, shell-shocked and nervous all at once.

Love Sasha xoxo