28 02 2009

Brief background for any new readers: Info about me (sasha) and my life is in the “About” page so you can catch up on me there.  Feel free to comment on your life and your issues.  The readers of this blog are creating a community and many have their own blogs that I have created links to on the right.  Check them out and feel free to tell me your favorite ones.  I thought we’d do a little top 5 blog links contest for the next 30 days.

Jax left around 6 months ago, but lives an apartment away.  He’s not willing to say we are never going to be together again.  I’ve tried in numerous ways to move on but over the next 6 weeks I am forcing the issue by having a JAX BLACK OUT starting this Monday.  (Why this Monday?   –  because he helps me do my laundry and I’m not mentally prepared to do that on my own yet.)  Also, if there’s an emergency like there was last time I tried this a few months back then we are allowed to communicate temporarily.

The great thing about dating with a chronic disease is that this issue applies to everyone with a chronic illness, not just a specific type of illness.  Many of us have been through the true love in our life that has left after 4-5 years.  That’s certainly my situation w/ Jax.  So in an effort to move on I signed up with a few online sites and started forcing myself to go out to events again.  At first I pushed it too hard.  I was going out so much that I ended up crashing back against a 3-4 month wall (that’s why I was offline for quite some time).  Now I think I have a better balance and am saying home more than I want, but at least nit making myself worse.  I also asked the advice of friends about whether to mention my illness straight away or to keep quiet.

(Read on for more on DATING w/ a CHRONIC DISEASE, Dating Print-Outs, and Bad Kissers need not Apply)—> Read the rest of this entry »



7 11 2008

I realized that I’ve written 3 blogs in a row about pain & depression.  I’d love to write about cheery happy-go-lucky stuff, but that is simply not the reality of my perception right now.  In “real life” I have to pretend all the time that things are fine and that i feel fine. I spend quite a bit of energy hiding my pain and/or depression which is right now the larger issue.  Frankly, if I was honest with anyone but my blog about where my head is at then I might be committed to some mental ward.  I don’t feel deathly or like being dead or anything, but I honestly can’t seem to shake this depression.

I’ve been looking for solid work rather than my piece meal clients.  My client-base are all having to reign in any spending which has left me in a bad position.  I’ve received an interesting reader comment i’d like to share wth you.  From Roberoo: “I would hope that most of those who have been in chronic pain for longer than a year realize that Intractable Pain can cause isolation. Isolation is like a prison cell for the IP and it is “very” important that all IP patients make an effort to keep the friends they have, make new friends, become involved in groups, churches, PTA, and keep the lines of communication open to others. It is so very important that we stay a social being, as isolation leads to depression, loss of self-esteem, a perception of a higher pain level, and a feeling that we are going this alone which can cut us off from family, friends, and even other IPP’s.

I can totally see how it’s important to continue to go out and meet people.  The irony of course is that hen you’re depressed on top of pain it takes about 85% more energy than normal.  I’m certainly making an effort to get out of the house, talk to friends, and even pulled out my elliptical exerciser.  I figure a little every day might pull me out of it.  I sure hope so!!

I’m curious what positive things I’ve done for myself since Jax split up with me that go inline wit this reader’s comment.  First, I’ve called close friends almost every day.  I’ve called my mom every couple of days which is very unusual for me (usually it is twice a month).  I joined Weight Watchers and have been going to the meetings.  My hope is to meet new people there, but no luck so far. I do go with a very good friend & her hubby so at least there’s some interaction. I’ve been forcing myself to go out to as many things as I’m invited to, but then I ave myself a hard time if I didn’t feel up to leaving the house.  I’ve gone to therapy twice (two different therapists cuz the first one bailed on me), writing here more than usual.

I also got a kitty cat named GUVNOR who is the cutest darn thing I could imagine.  I’m teaching the cat how to “sit”, “stay”, and beg for a treat with its paw.  Hopefully this warm fuzzy super cute little creature will return my brain to normal!! more soon. (photos coming soon).

love, sasha xoxox


28 10 2008

If you’ve been reading any of my posts the past 5 weeks then you’ll know that I’ve been severely depressed. I’ve also been looking for work because all of my clients and company work literally dried up the minute the economy started to become terribly worrisome.  All my company contacts have told me that they are being forced to scale back and no longer use contractors.  This is one of the toughest times I have ever gone through that is non-medical. In addition, the love of my life, Jax, split up with me because he could no longer deal with the stresses in my life and he moved next door (one apartment in between) to my old office so he could work on himself.  We had our business together so all this week we’ve been working towards pulling it apart in an organized manner.

On top of this, I take a very low dose of Cymbalta, which is used to treat pain in my case…but I am not on an antidepressant.  (I still get those shocking jolts from Cymbalta).  Tomorrow at the Dr. office I am going to ask for the first time in my life to go on one.  I am a painter on the side and I never wanted to take antidepressants.  I’ve always been afraid it would ruin my creative abilities and urges…but now it has become a matter of life or destruction.  I would never harm myself intentionally, but all my close friends and family know that I injure myself very badly through thought alone.  My health can not hold up under such depressing news on so many fronts. Plus i can’t sleep. I have horrific insomnia and keep sleepwalking although ive not yet heard of anyone else sleepwalking due to enbrel.

I keep falling asleep outside in the chair which has made my RA rage out of control.  I can barely walk again (and will need to use the cane tomorrow) and am looking forward to getting my new shipment of Enbrel in.  My legs and feet are so swollen and I have to take vivarin to stay awake because my body clock has become so tuned in to night hours when I spend 8 hours or ore applying to jobs.

Do you remember the old movie SINGLES?  remember the guy who loses his job and girlfriend so he locks himself up in his apartment and eats crappy food and his place is a dump until somehow he finally gets his life in order?  Well, I’m him right now, but still locked in the apartment mode.  I’m waiting for interviews and hoping something breaks through!!

Finally,the good news is that i started Weight Watchers.  i am not like the lucky people who have taken steroids/prednisone and were able to quickly lose the weight.  For me, the steroids turned OFF my thyroid (I now have hypothyroid) and made it impossible to prevent 45 pounds of weight gain.  I was 130-135 and am now 176!!!  I’ll update my blog each week about my status – My first goal is to go down to 158 puonds which is 10% of my current weight. I am going to Weight Watchers meetings this time with some good friends and I plan on really doing it this time. It’s been exactly 1 year since I started taking steroids.

Thank you for your sweet comments about getting through this dark time.  I do want to write one Jax update.  This past weekend I came to a breaking point where I realized that I need to remove myself from his space.  We were spending a lot of time together even though he broke up with me.  I was loving it – but the times in between were far too painful.  (I just heard a gun go off… oh Hollywood can be so nasty).  A friend told me it was killing me.  So now I have told Jax that I could no longer see him ever again.  I planned on making this true, but much easier said than done. My birthday is this weekend as is Halloween and we’re going to go with friends to the parade here in Hollywood.  Maybe that’s the end of it.  I need to stop having Jax in my life for a bit, but I also don’t want to.  He helped me so much/  It’s so tough to go back to living alone.

Being this depressed absolutely affects my pain level for pancreatitis (CP).  I just have to manage it better.

Love,  Sasha xoxoxoxo


25 10 2008

If I was allowed to drink then I would be plastered right now.  TOTALLY plastered.  I know… drinking doesn’t solve anything – and i can’t touch even a drop of alcohol with chronic pancreatitis.  Is drinking alcohol also bad for RA?  I never even asked the Dr because I knew I couldn’t drink anyhow.  When I was still allowed to drink i was never into soft stuff like wine.  I was in it to get drunk – I know I sound completely immature right now.  And that’s okay with me.   I’m in a truly dark and horrible place.  My RA is okay and I did see the new Rheum Dr. (known as the rheumie) and she was GREAT!  I really like this doctor.  She is at Cedars-Sinai in Los Angeles.  She didn’t do all of the anal testing which is not always a great thing, but I went in on a mission to get a new scrip for Enbrel and that’s what I got.  I’m now going to take 50mg with that “pen” rather than the 25mg twice a week with a proper needle that you jab into yourself like an old RN pro.
Why, you might be wondering am I in such a bad place?  I know this sounds retarded – i really do but this is the problem which has nothing to do with RA.  This is all about relationship issues stemming from being sick for 3 years.  BUT I’m not sick anymore.  I’m now in the “management” phase… but my whole life just fell apart in one fell swoop.

Essentially 5 weeks ago Jax broke up with me.  He said it was medical reasons.  It really wasn’t but it was a good excuse.  The real reasons?  5 year itch?  5 year flight from committment?  Not sure.  i hadn’t even realized he fell out of love with me.   Now, I had always been super independent before Jax came along.  I even liked being single most of the time.  I painted a lot and had a good network of friends.  Now, after 3 years of being sick my friends can be counted on  one hand.  Of those only 2 can be counted in my hometown.  The others live back in my college town. I had multiple clients running at once.  I had a company with employees, an awesome office, an amazing apartment, and so on.  I was my own self 100%.  i didn’t need to rely on anyone, but I leaned on my friends as they leaned on me because that’s one reason friends stay so close.

Now, after battling for my life while Jax and I lived together he just got “over it”.  He was super supportive throughout the whole ordeal, but now that I am finally feeling better… he breaks up.  Problem #1 is that many of my “friends” left when I got sick.  I know, you must be saying – then they weren’t real friends.  And I suppose they weren’t, but I really need a support team right now and I only have 2 people here to lean on.  Everyone else left when they realized I couldn’t hang out.  They took it personally no matter how much I assured them it was my diseases preventing me from going out.  And it really was.  i couldn’t be superwoman in my free time.  it had taken all I had just to get through a day of work. Problem #2 – i am still beyond upset that Jax left.  I’ve done a really good job of keeping my mouth shut in public, but once I get home I just crumble.  I know I am not the first person to go through a break-up, but this one hurts so bad.  I was totally in love with Jax.  I thought we were a great team since we went through so much together.  I hear that is common – that the couple splits once the sick person is much better.

Now I am simply a total mess.  I can’t stop crying.  I really can’t.  I’m supposed to be a very strong woman.  All my friends (I actually do have a number of friends but they live in different cities) see me as that.  I am known as strong, tough, capable of kicking ass and taking names.  But now… now I am just a lump of stupidity.  I NEVER thought I would be this upset over some guy!!! Who cares that he loved me through my worst?  I simply had hope and faith in humans  – and now i feel so duped, like it was all a show just to prove to himself that he could go through it (subconsciously).

We’d been hanging out more and more these past 7-8 days and I thought it was a good sign, but tonight I saw a woman come over to his apartment.  he lives one apartment away.  No big deal, right?! Except that he told me he was going out with his guy friend and he said if this guy didn’t call him then we’d go see a movie tonight.  We had laready spent the day togethr running errands and having a good time doing it.  I even helped him put up decorations at his new place.  I even asked him to tell me if he was going to start dating then to please let me know so i wouldn’t have to be shocked.  He agreed and said he had zero interest doing that right now.  BULLSH&*(!!  Apparently it has all been a lie.

I know I need to get back to my own life and MOVE ON.  I just don’t know how yet.  I mean, this will certainly help!! Now I have a reason to slam the door shut and not see him at all – but before it was like this odd limbo… trying to be good so he could see that i am not sick anymore. i haven’t had 1 pancreatic attack around him in months.  ive been uber-sweet so he could recall all of the good times.  BUT I had no idea it was like this.  I feel like such an idiot.  I can’t believe I’ve been so fu^%ing sweet to him since he broke up with me.  If I had known it was about a woman then I would have just moved on sooner and stopped crying ages ago.

I know I need to stop crying and buck up – put my “bootstraps on”.  To get on with my own life.  I know I need to do this.  I will no longer be sharing, kind and gentle.  I will simply snip snip snip and cut him the f&** out of my life right away.

I believe it is a woman he works with. And because of the prednisone weight i gained earlier in the year i feel like triple shit.  I am supposed to be 135 but I am 175lbs. I’ve never been fat my whole life, but I know I am now.  Plus, now I feel so ugly.   I’m going with my friend to a weight watcher’s meeting in the morning @ 730am  (it is 445am).  But I can’t even go to sleep.  i am so upset right now.  Its way too late to take a sleeping pill.

Who would ever want to be with me – even once I am healed from this experience?  the mental and physical toll of this is too much.  I simply am very unhappy being on earth right now. don’t get me wrong, I would never do something horrific, but I certainly have thought about how nice it would be to be dead finally.  none of this has killed me yet and I honestly don’t know hwy.  It should have. I mean, I might never be able to have kids.

RA, CP, a metal pump, Dr visits all the time, prescription meds all the time.  I can’t go to far for too long without needing my pump refilled or my Enrbel cold.    Maybe i’ll just walk around Hollywood and try to calm myself down.  I am very un-chill right now.

love is so confusing and messed up,  Sasha… no xoxo’stonight. sorry.


19 10 2008

Some days I’m not sure what I’d do without reading the amazing comments by you all.  It lifts me up, reminds me I am not alone, and lulls me to a place where I can actually go to sleep.  Ever since Jax moved out i haven’t been able to get any normal sleep.  I have no incentive to go to bed – except of course my health – but I’m not in the mood to be all “goody” about my health.  I know I am making it all worse, but I’m still so shocked that Jax left that I haven’t found a good place yet.

I do want to mention a few readers comments because they really made me happy/thoughtful/loving..Also, here’s a link to the newly updated Tips Page.  It has links to some key past posts.

. –Michelle

Wow!!! This one blew me away.  So far I’ve only met one other online pal that has both CP and RA!!  This is incredible because i don’t believe I have ever mentioned that my issue is specifically with my sphincter of oddi!  But you’ve got it spot on.  My DR explained it that it’s like a door that is broken and is always stuck.  Sometimes i swear i can feel the food rushing in.  I know that is not really what’s happening but it feels like hell so i have imagined all sorts of things.  In fact. my CP is so much worse than my RA – but it’s was too depressing to base an entire blog around.  I would love to speak with Michelle offline!

...About 15 years ago I was dx’d with Lupus. I had 5 really hard years of
that disease and miraculously managed to go into remission and was able
to get off all the Lupus meds. I thought my current symptoms were Lupus
rearing it’s ugly head, but no……it had to be RA.
I have really been able to sympathize…
–Donna C.

This reader’s been through a lot with lupus and RA.  I’d just like to mention that I couldn’t take methotrexate because it made me soooo sick.  It was literally killing me.  Glad I’m off of it – although I did feel like it got my RA under better control.  I’m going to see the new Rheumy DR on the 23rd.   I can’t wait – i’m so happy I don’t have to go see that pompous jerk DR.  (To read more on methotrexate and me click here).

So, this is what’s going on with Jax and I.. he lives next door (one apartment in between). And we spent all day Saturday together with plans to spend about half of Sunday together.  Admittedly, he’s confused!! Is he coming or going?  I don’t care anymore.  I’m just happy to spend time with him.  He does love me and it’s very obvious.  Also, He helped me out so much this past week prepare my new resumes..and he’s been training me on the items I’m less knowledgeable about (don’t forget we ran/run a company together).  We’ve closed down most of the company sector that he ran with me, but we still have 4 key clients together. You might ask – so what changed that I am not as depressed about it all right now… So what’s the difference?

I talked to one of my brothers this week who seems to know Jax better than Jax knows himself.  He’s the brother that advised me not to shut/slam the door on Jax just because Jax needs space and a massive change.  Earlier, He suggested I wait it out.  Then, when 3 weeks had passed he wasn’t sure what to advise.  Now, at a month out he said I should take the attitude “whatever..” and so I have.  I am happy seeing him and I am finally happy without (not as happy of course).  Jax and I have so much we love to do together that we’ve even bumped into each other out.  I took that as a sign that we really are meant to be together.  Who really knows??

But, now that i have “whatever” plastered in my head I believe it is fine for the moment.  Sure I’d love to kiss Jax, but I see him struggle the same way I am with that stuff.  Maybe we just need space in order to reinvent the sex stuff?? Not sure.. but I will say that I am so happy to hear from Michelle/the reader who has the exact same stuff as me. CP is the worst thing I could ever imagine – no one truly understands the pain of your pancreas hating you so much that it tries to kill you on a moment to moment basis!!!

Love for now,,Sasha…. xoxoxo


13 10 2008

I’m starting to get a cold, but took Enbrel anyhow because I was starting to get so swollen and immobile. Stiff like the dead.

So it’s been 3 weeks since Jax and I split up. Now I’m in the anger phase of the grieving process. I’m so angry at Jax for so many things right now. Primarily, I’m angry that he insisted I NEED him-That he loves to be needed. So I let go of my fiercly independent ways and let myself need him. Of course I had no idea he would come to resent it.

So the pain of our split is evolving… But at least I know that these are deep issues of his more than my medical issues as he claimed. Maybe there is hope that someone else is out there for me…

Love Sasha xoxoxo


11 10 2008

Thank you to all of you who commented on these tough times I’m going through since Jax and I broke up. I heard your words of wisdom and love. I heard that I need to focus only on today. I also heard that no matter how bad this hurts there’s amazing things I can do in the future if I simply believe I can get through this.

Physical pain is never as painful as this even when th Docs compare pancreatic attacks to giving birth. I certainly don’t doubt that. I know I’m suffering from a broken heart. Jax’s mom (who I never met cuz she lives in England) seems equally crushed. My folks are worried about me because I’ve been so dark these past few weeks.

When I first got sick I had tons of friends. I was always having parties. I was surrounded by them and I gave my love. Over time, as my disease of CP progressed they began falling away. Primarily it was because I couldn’t go out and share in good times and bad with them. It became just Jax and I and a number that fits on one hand. I wasn’t bitter or mad. I knew they still all had love for me. But in LA there’s so much to do and you do lose touch with the people you don’t see around much.

I wasn’t worried about spending so much time with Jax. I’m 35 – he’s 38 so I thought we had simply changed our priorities. So, now that Jax and I are no longer, I don’t have a large enough group or posse of freinds to fall back on. I’ve called the ones I do have, but somehow I think it would never be enough people to take this hurt away.

CoincifeI bumped into Jax on the street tonight. It was so odd. After a few beats I realized I was going to cry so I got out of there fast! I felt so stupid. Imagine, at 35 feeling like a school girl! Ugh! It’s so pathetic. So this all led me to my latest decision: I will need to break off even seeing Jax for awhile. I wanted to do it via text but I’ll wait to do it in person.

I saw a new therapist tonight. An AFFORDABLE therapist for once. I’m not sure how he does it but he’s the therapist I met when I heard him on a radio show. I called in last weekend. He agrees with my DR’s that some of my pain issues might stem from lots of sexual abuse as a child. Yes, I said those nasty liitle words Sexual Abuse as a child from more than 3 people. There was extreme violence as well. It’s the entire reason I’ve been working with at-risk teen girls. Even if life is shit I’ve always reached out to be helpful to someone.

The appointment was just an introduction but I felt good about his type of psycotherapy. He even talked a lot!!!

My RA’s in check today. I walked a lot tonight and I’ll do more tomorrow. I just need to lose a lot of weight right now to make myself feel at least a little less crummy.

Over and Out,
Sasha xoxoxo