Dx LUPUS

14 12 2008

I’ve had a tough week.  I’m working hard at staying positive, but it is unavoidable to have some pitfalls along the way – that’s how it always goes for the first couple of weeks after an ER or hospital visit.  I went in for a severe pancreatic attack because of my chronic pancreatitis.  I didn’t get treated, the hospital lied to me about calling my doctors and after 4 hours of screaming & writhing in pain I eventually had to take my own medicine and left.  My pain management doctor is furious and said they gave me the “drug addict” treatment which means that the ER team thought I was faking it so I could get meds.  Forget all of the facts 1) my doctor called ahead telling them to expect me.  2) I was in so much pain I was hyperventilating and literally screaming/crying.  3) I was severely dehydrated and was upchucking bile.  4) I haven’t been to the ER for a year and a half.  5) I gave them 3 of my doctor’s phone numbers and they didn’t call a single one but claimed they did.  …and the list goes on.

Jax found out I was in the ER from our building’s security guard.  He’s been so sweet ever since then and has even written xo’s on his text messages.  I truly hope that he chnages his mind about splitting up and realizes we made such a great team (and still do even as friends).  But this post isn’t about Jax or my severe depression or my new anti-depressants as a result.    This post isn’t even going to be about the horrific treatment I get in ER’s because pancreatitis does not sow up in my blood work.  Nope – this post is also not going to be about sex or the lack therein.  It won’t even be about my small vctories making friends old and new and reclaiming my life.  It’s also not going to be about my RA limbo due to changing prescriptions ofEnbrel and thus another lovely month of being off Enbrel more than on. I’m not even going to talk about the anti-depressan Wellbutrin causing these bizarre spacey-head episodes where I feel like my brain is floating in and out of reality.

This post is going to be about the facts.  My mom at age 65 was just diagnosed with RA.  Her hands are gnarled and her fingers and jointy and f–ed up due to it. But it still doesn’t show up in her blood work.  Then, the day of my ER visit she had a pancreatic attack for the first time in her life – but the bloodwork and MRI show no issues with her pancreas.  BUT she was just diagnosed with Lupus at age 65.  She has EVERYTHING I have except she also has heart issues.  So essentially, Lupus did not show u in her bloodwork until she was 65 years old but she’s had it all along.  Dr’s rely too much on bloodwork.  It’s a flawed system.  There’s got to be another way.  I understand they must rely on blood lab results for health insurance reasons… My general doc says the likelihood/chances that I have Lupus even though it’s not showing up in my bloodwork just shot through the roof.  In a way it would be a huge relief to be able to tie all of my autoimmune diseases together under one roof.  My Dr said it makes sense given that the pancreatitis and RA don’t show up in my bloodwork either.  I’ve simply had the marker for inflamation through the roof – as did my mom in her lab results for years.

I am torn between sadness, confusion, and a deep desire to grab the net hot man I see and ask him to have sex with me right now while I still can before my body falls part even more.    I’m going to start dating via match.com or maybe nerve.com.  The only thing getting me through right now is faith and the belief that I’ll find someone out there that won’t be afraid of breaking me in two when we are shagging or something more romantic. I’m just hoping I don’t scare any prospects away.  Now I just want to go to sleep.

Love, Sasha xoxoxoxo

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PAIN and DEPRESSION I

2 11 2008

CHRONIC PAIN & DEPRESSION part I – Fighting Death and Pancreatitis
After reading this go to Pain and Depression Part II – Swollen Blob

I’ve given this blog post an incredibly dull title on purpose.  It is an awful subject to be forced to write about. In many ways they go hand in hand.  Some days this is not true, but others it is so dreadfully true.  It seems to come and go in waves.

If you are new to this blog, my name is Sasha.  I live in Los Angeles (but everyone thinks I am from NYC since all my family lives there) and have been a professional business woman & consultant/freelancer for many years.  I’m always given the title “Type A” personality.  I am strong, strong-headed, and also very passionate about my work/career.  You can learn more details about me here and more about my tips for you and more about my medical issues here.  I’ve just gotten through the toughest 4-6 years of my life and now find myself in the maintenance phase of my health journey.  Also, today is my 36th birthday.

I don’t have kids and I’ve never been married.  I am newly single (6 weeks ago ) and this leads me to want to talk about pain & depression.  About 4 years ago I had emergency surgery to remove my gall bladder & appendix.  In fact, I couldn’t leave the hospital alive unless they determined what surgery might be able to allow me to live.  You see, beyond RA I also have CP (chronic pancreatitis).  I remember begging my mate and love of my life Jax to not tell my clients that I was sick or in the hospital.  It was the 4th, 5th, or maybe 6th time I was in the hospital in 2 years and I wanted my clients to know I’d be back at work the next day.  HAHAhahahahaha!!!!  Naturally, there came a point where this became impossible.  It was a HUGE moment for me to actually admit to my clients that I was sick and in the hospital.  Before that moment I refused to be considered a sick person.  I prefer people to remember me from my work.  Initially i got better, but then over time I got excruciatingly more ill.  Eventually I got to a place where I wanted to let go of life/living when the pain became unbearable.  [pancreatic attacks are so painful they are often compared to the pain of giving birth.].  Through the whole ordeal Jax stayed by my side and urged me to come back to a place among the living. I don’t know why I wanted to give up back then, but it’s happened a few times after emergency surgery – the will to fight becomes cloudy even if only for a moment.

During that whole time I tried many Dr’s, medicines, formulas, methods, western/eastern, and was then faced with a horrific decision. My GI Dr. told me I needed to get a J-Tube put directly into my abdomen so food would not go through my mouth.   I would have to carry around an IV tower 18 hours a day and essentially I would be an official “VISIBLE SICK PERSON”.  I refused.  I knew it meant my life would/could be over in 2 years….but I refused to be a sick person.  The opiates gave me such severe constipation that I went 12 days w/out a BM.  (That was WITH prunes, exlax, miralax, enemas, colonics, etc).  For example,  Jax would even go outside to give me privacy! He’d turn up th radio so it would cover up any bathroom sounds.  He made the worst, most embarrassing situations seem tolerable.  He was just so awesome like that.

Eventually I ended up at a pain management clinic and a year later had surgery to implant an intrathecal pump that delivers morphine & fentynl directly to my pancreas.  Problem solved and life expectancy back to everyone elses= unsure. But life had other plans for me….. Go to Pain and Depression Part II – Swollen Blob

One thing I definitely want to mention about this part of my journey is that I had a very sexually traumatic and violent childhood.  The Dr’s have told me that when you’ve been in an extreme environment like I was that studies show people receive the pain signal differently.  I wonder if it wasn’t all of the unbearable stress my body was once under.  But I could not escape that situation.  I tried….and ran away at least 15 times.  But I had career goals and eventually stayed at home until University.

The Dr’s also told me that Jax’s love and affection for me was a key ingredient in my quick healing.  They said love goes a long way.  I know that Jax and I had very hard times through this.  The ups and downs of Dr visits was sometimes far too much for me.  Jax let me lean on him in a way I have never allowed myself to lean on someone before.  I know his love got me through the toughest of times.

Love Sasha, xoxoxo

Please read Part II.





Link: Sexy Diseases & Halle Barry

10 06 2008

I love reading and came across one of our readers here who has her own blog. This is one of the funniest lol moments she recently had:

Sexy Diseases and Halle Berry ... On a recent visit, my rheumatologist actually took time to sit down with me. The problem is, we spoke long enough to scare the hell out of me into getting off prednisone sooner and taking a more effective drug. She goes on to write:

…And all I could think about was Halle Berry…. Halle Berry has diabetes…. She is hot…. If only I looked as hot… then maybe having RA wouldn’t be as bad…. You’ve got to check out the rest of it: Like Lilies of the Field. (Written by Elena)

Good Job Elena! I really enjoy when other people can see the comedy in all of this! I’ll keep you updated when I find more comedic moments online. –Sasha xoxo (PS. You know I must be feeling a lot better if I’m actually visiting other sites!).





Freedom From Everything

7 03 2008

I’m giving a presentation ( 3 presentations in one week actually) about my work to a large group of teens at the top of April. I’ve done presentations for teens many times before, but I’ve been asked to talk about my life and career from a more personal/health perspective. I’ve been thinking about how to explain RA. How do you explain the emotional hits you take for something that’s merely physically altering? I’m pondering how I’ll mention the difference between thoughts of suicide vs. having a disease that’s known to kill you faster than others? Also, how do you balance that with being no different than the odds of an accident dropping you to your knees and the end of this life as we know it. How do you mention that you’re certain there’s life of some kind beyond this one because I’ve left my body on a few occasions when my body was going into near-death shock from pancreatic attacks (acute pancreatitis)? How do you explain that none of these defines me as a creative successful person?

Some would say that the facts point to a lack of success in my life: no kids, no marriage, no Mercedes, no property ownership. But I guarantee that my bumpy road journey will have been far more mind-boggling and interesting than most peoples. As a side note I do run my own company and have created vast amounts of great work in my career.

Perhaps I’ll simply state that I have this disease, this is what it does medically, emotionally it can be exhausting and physically it can be a show-stopper – but it’s also a freedom. Yes – I said a freedom. How? Easy. RA enables me to speak up for myself when I would let my client determine the next steps. RA allows me to make boundaries without guilt. RA allows me to say NO – I’m not going to be doing that this evening. RA reminds me to stop working and go to sleep. RA reminds me to get some exercise and that I’ll actually feel better afterwards. RA creates a bond with other RA sufferers and in fact, other disease sufferers and caretakers worldwide.

RA gives me a zillion other freedoms but I dont need to list anymore of them now.
Running naked and free: Sasha





How Did We Get Here?

3 11 2007

Jax is still living next door. Things just suck without him around. My ball of sunshine is gone. It’s so hard to have him gone even though he’s only a door away. Ironically, we’ve had a good couple of days and he made up for my shitty birthday with a great weekend. Plus, he gave me the exact present I wanted – a new ipod (my old one broke down after too much use). He did it in such a sexy great way!

He had me get blindfolded after we got in the car. He knows that I have pinpoint accuracy with directions and told me not to cheat. Thankfully he drove around different side streets in all different directions to get me turned around. It worked well. I thought we were in Beverly Hills or something. I had no idea what he was up to. I was loving the adventure! I was having a blast. It wasn’t hard to push any lingering memories of badness out of my mind.

He turned off the engine and had me guess where we were. I had a slight feeling where we were based on the parking garage – but only slight. It was such a fun game! We went to the Apple store and he told me to pick out any ipod I wanted. I picked the perfect one for me (I didn’t need the best model and in fact didn’t want it since the primary purpose would be for working out I wanted something a little lighter).

We had a yummy-licious birthday dinner of seafood and Italian. This was just grand. The next day we spent all day relaxing and reading and talking. We walked for two miles and had a lot of fun and giggles. It feels strange to say this, but we were in love and having a great time.

We’re going to see the new therapist in 2 days. I’m so confused about this whole thing. We’ve talked a lot these past few days. I feel like there’s been some sort of breakthrough.

This is from this past Nov 1st and 2nd: At first it was depressing and angry talk: In our argument/conversation about how we ended up like this he tells me about a painful experience where I wouldn’t take a hint. He tells me that he’d once sent me photos of himself naked in the shower. Apparently he asked me about them when I got home from work and just said yes, I got them… and nothing more. I’m so upset he uses this example of feeling burned because I tried for at least a year to get our bedroom windows steaming again. I had bought sex games that he didn’t care to play and offered to go down on him but it was never the right time. In fact, we’d argued a lot about it and he told me I could offer to go down on him when he got home from work, but we had my staff in the office and it wouldn’t be possible since they also worked here at our place or needed me a lot of the time. By the time they left it was too late or something. I don’t know except for that this was becoming a huge issue between us.

Once, a year ago in a fit of anger over having to talk to me about our sex-life, Jax told me I wasn’t exciting enough for him. To this day I can’t get it out of my head. I’m a Scorpio and never been accused of such a terrible thing. What?!??!?! I’m the one who’s asking and begging you to try different things in the hopes of regaining that spark. Had my surgeries been too much? Did I need to leave? I urged him to go with someone else but he stayed and we continued to be in pain over this subject. My dreams became my sexual refuge. I’d even stopped masturbating because I was afraid of waking him up. (I used to masturbate at least 6 times a week). To be fair I was often too sick to feel like masturbating. I was lost…stuck…and still hopelessly in love with Jax. We still had so much fun in other parts of our life.

-sasha





Trying to Help Ourselves

25 10 2007

Written in Sept. : We each go to the doctor and discover through blood tests that my estrogen levels has hit literally rock bottom and his testosterone level is in the shitter, as well. It takes about 2 months for more tests and finally October 25th or so for Jax to get a testosterone shot.

Written Oct. 25th: I’m getting leveled out back on the pill, which seems to be helping. I suddenly feel like a sexual being again. It’s subtle but growing steady and intense. I want Jax to toss me against a wall and do me. I can’t stand this non-sexual thing anymore.

The 2nd to the last week of October we finally go see my psychologist. She tells us that my illness and Jax’s long-term caretaker role could’ve stressed his system and created low testosterone. WOW! It’s eye opening and sounds plausible. She refers us to a couple’s therapist/sex therapist. Maybe there’s hope for us after all.

hopefully, sasha





Dance Sexy Babe

1 05 2007

I’m home for about a week. Jax & I are getting along great, but there’s something up. I’m embarrassed to talk about this but perhaps it’ll help me in some sort of cathartic way. We haven’t had sex since my surgery. Luckily we had sex the day or two before it – but not since. I’m sure this is normal. I’ve decided I’m going to just tell Jax to let me go down on him. I know most men wouldn’t have to be forced and I’m sure normally neither would Jax, but this caretaker/ill person thing has gotten out of control and he’s always on eggshells when it comes to my health or lifting something or cleaning house or anything.

I mean, from his point of view, how in the hell is he supposed to know if I’m in pain or not. It can change so quickly I’m not sure how even I can keep up with the facts.

We have a down moment and I decide to dance and get naked for him. It’s a perfect moment. He’s sitting on the edge of the bed. It’s not late and he’s not yet exhausted. (The pain makes it hard for me to be on a normal exhaustion schedule). I have the music up and start to shimmy around him. After a few moments of giggling and being silly he asks himself out loud what to wear to work tomorrow. gushhhhhh.. What a let down.

I’m crushed. I’m embarrassed and crushed. I feel humiliated and not enough. I fight for a moment about it but there’s no point. I dread that my resentment will get the better of me and I’m sure I take it out on him later. It’s my last attempt. There were many before, but I couldn’t take this type of rejection from the man I so badly want to be my lover again. I ask him to go to therapy but get shut down with excuses about why not.

-Argh! Sasha