INSOMNIA AND JAX

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.

PUMP FOR PANCREATITIS

 

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…

WHAT-I’M NOT DEAD YET?

Some days the severe pain creeps up on me when I’m working or out and about.  I have a handy-dandy remote control unit that goes with my pump for chronic pancreatitis. It’s a lot like the controller you’d get in the hospital to give yourself a dose of morphine.  The great thing is that the remote & pump delivers such a tiny amount but it’s highly localized to give the medication just to my pancreas and nowhere else (liver, brain, memory, etc.).  If the remote is making a big enough dent then I take the regular type of meds – in this case percoset and levorphenol.  I’m only allowed 2 percosets a day so I have to be frugal and watchful of my intake. But enough about the medical side of my life – let’s get into what I am really writing about.

I truly can’t believe that with all of my close calls in the ER that I am still here.  It seems astonishing to me.  But on bad days when the pain is out of control and I’m feeling tired and grumpy I feel like such a burden to those around me.

Although I’ve gotten my pain mostly under control (which is a miracle in itself) I still haven’t gotten my life back together.  I feel like such a drain on those that love me.  I rarely want to talk on the phone and even more rare to feel like I can conquer my stacks of paperwork or email.  I simply don’t have the energy.  Between fighting off the RA symptoms and pancreatitis pain, I simply don’t have the energy to make new friends and go out to new events.  I know the events are there for me to attend  – but I can’t get the stamina I need to leave work and attend a function.  And since Jax split up with me I haven’t had a chance to make new friends.  It’s awful and i feel so damn lonely.  I curse my health issues and scream inside my head at god.  Lately I’ve been thinking how funny it is that we often pretend that if god was walking here among us that he/she would be a homeless street man.  If god has any wits he/she’d be living it up as a billionaire.

I’m on the wait list to start the outpatient day group for depression and anxiety.  I really need some new skills/tools on how to live my life in this scaled down way.  I find I get angry to quickly when someone cancels plans on me.  I simply don’t know how to live in this scaled down way.  I used to be able to get so much done in a day  – now I am lucky if I accomplish one single thing.  Plus, now I can’t seem to stay asleep more than 2 hours at a time.  I messes me all up  – but it is usually the pin that wakes me up.

So the mental health hospital program is supposed to arm me with tools to get by a bit easier. As some of my readers know, I’ve been battling with severe depression for almost a year now.  It’s odd because I’ve gotten my pain mostly under some sort of control, but I simply can’t function correctly right now and every bit of sad news or new diagnosis sends me off the deep end to think about being gone/dead. If I’m not careful I find myself cutting into my own skin (when i was a teenager i used to be a “cutter” so it’s bringing up some old garbage in my mind).  It’s a release of sorts and sends the pain signal to a different part of my body so I get a little break, albeit a disturbing one.

Apparently, it’s not that ucommon to have these issues now that I’ve gotten my pain to a more liveable level.  So i’m certainly not alone…but I don’t get why…. I mean- if  was able to conquer that type of brutal pain – why is it only now that I don’t have the right coping tools? Mainly I feel lonely because I was bedridden essentially for so long that I lost most of my friends/acquaintances.    IT’S SO UPSETTING/sad that I just can’t seem to get through it.

I have made lists of new events and workshops I’d like to go to – but the reality is that it is not very easy for me to go – often I am not well enough.  The times i have broken through the anguish part of it and gone  –  I’ve ended up at the event stuck in the bathroom in an all-out-battle with my bowels.  (I still have a lot of bathrooom issues due to the meds that I take.  I totally accept that this is my life now – so it really is okay with me.  But sometimes I just have a real hard time actually dealing with it.

Love Sasha. xoxoxo

DATING – BACK IN THE SADDLE

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)—>

SICK GIRL

I’d like to discuss a book I recently read called SICK GIRL.  The book is an exhausting complainers book by Amy Silverstein who at age 24 suffered congestive heart failure and then received a heart transplant. She ends up living far beyond the expectations of all medical know-how and comes to write a book 17 years post-transplant. This woman is EVERYTHING I NEVER WANT TO BE.  She complains non-stop and is constantly angry at someone, anyone, everyone.  Amy whines on and on about how she refuses to take prednisone because it’ll make her fat.  GET OVER YOURSELF, AMY! She’s certainly more than allowed to complain – and I certainly had the choice of putting the book down…but it was her outlook on things – that drove me nuts.  Amazingly, she got engaged to her boyfriend the moment she rolled out to the ICU after her transplant.  As she writes the book they are still married 18 years later.  Her hubby’s name is Scott and he must be an absolute saint to put up with this nagging, annoying, self-centered twat.  She reminds me of everything i never want to be as a patient or mate.  She feels the world revolves around her although her huge realization is that when she dies life will go on without her.

So why am I bringing up an author/person that I dislike so much???  Because reading her book reminds me that life is all about choices – the small ones we make everyday.  It’s up to ourselves to find peace within ourselves about our disease(s).  It’s our mission, I feel, to remember that EVERYONE is going through some hurdle or difficulty.  It’s our duty, in my opinion, to know deep down that we are not being singled out for torture – everyone has their own cross to bear – as the saying goes.

Amy is outrageously self-righteous and too smart for her own good.  She believes that a doctor’s job is to  make her feel better mentally, to put her at ease.  This is very far off from my view of what a doctor’s job should be.  She makes it seem like she’s the only human being that has ever suffered; that’s ever gone through a battle of her body. Read more of the review Here –>

PAIN MEDS & CURRENT JOURNEY

Hi there.  If you are new to my blog please visit the about page.  This site was created by me (sasha)  because I have RA and chronic pancreatitis (CP).  Some blog posts are more about RA, others are more about CP.  The ones in between are about living with a chronic disease and the journey it takes us on.  A portion of this site is about the caretaker/caregivers journey.

PAINS MEDS  – Chronic Pancreatitis – The Definitive Sasha Story.

Many readers write to me about their pain med routine and how to resolve this anguishing battle.  I have luckily come out on the other side of pain meds so let me briefly explain my journey.  When I was first in the mystery zone and then finally diagnosed with CP in 2002 I was on major amounts of demerol. It was absolutely like candy.  I was given fentynl suckers (usually for cancer patients) and liquid morphine.  I could not take Vicodin because a) it would do nothing b) i always vomit 30 minutes after taking it.  I was on this hardcore pain killer regimen for a few years.  I felt tired all the time and clearly drugged up.  But I had no choice.  I had severe constipation and wouldnt go for around 12 days in general.  I tried everything.  i remember once I even took that awful fizzy stuff you take before a colonoscopy TWICE in one evening and still ZERO bowel movements.  The only things that helped (including miralax, enemas, exlax, suppositories, and may more)  were massive quantities of prunes and colonics.  Without those two friends I would’ve died from toxic poop.

My GI talked about a whipple for my CP, but explained it would do nothing for me.  He felt I would still be in the same amount of pain after.  We almost did a stomach tube until the psychologist stepped in.  I would’ve had to have an IV tower 24/7 for a full year.  What a major non-workable scenario. (More on this here).  My GI whom I love told me there was nothing but pain control that would really work.  He urged me to never do another ERCP.

Eventually the state board contacted my GI doctor and said I was taking to many pain meds!!! WTF!  What could I do.  I thought i was being accused of being a druggie.  But luckily my GI referred me to a pain management clinic and it CHANGED MY LIFE.  Not all pain clinics are good so please be very careful and do a lot of research on the doctor.  Mine is always a top 20 doctor in the US for pain management so I felt like I was in good hands.  He takes a 3 pronged approach – mental health care was critical, next was visualization classes, and finally my bi-weekly pain med clinic appts.

The first switch was medication.  I got on percoset (oxycotin), fentynl pops, and slowly but surely he stabalized me.  My anger started to disapate.  They then tried a neuro-stimulator but no effect.  (More on this here).  We tired a nerve blocker also, which helped but only for a short time and tiny effect.  After one year of the 3 pronged therapy I was ready for my pump.  (Read all about it on these pages. Me and My Pump I and also Part II).  I am now finally living under managed pain care.  It has changed my life.  I feel more normal now and I have hours without pain!!  It is unbelieveable!!  I can’t make any specific recommendations to you – but i would urge you to seriously get second or third opinions before doing a surgery that you don’t know much about – particularly if you are not living in Los Angeles, Houston, or NYC.  These are the only 3 medical centers that are using absolute modern technology.  Otherwise you are getting knowledge from 10 years ago.  Perhaps the Mayo Clinic is progressive, but I could not go there financially.

Now i am still on Percoset (oxycotin), but only 1-2 a day.  I also take a lesser known drug called levorphenol for pain.  It is longer acting but takes ages to start to work.  Between these and my pump remote I am living tolerably.  I will lose the $4000 remote in December since it is only a loaner so i know I will have a rough time being without it… I’ll go back to being on a few more meds.  But now I know I was not a druggie.  I was a person in a hell of a lot of pain.

CONTINUING JOURNEY.  RA & More

I’ll write more about the continuing journey later this week.  I still have severe insomnia.  Also, I just started on anti-depressants since I just couldn’t stop feeling fatalisitic after Jax left.  I lost my support system.  I lost my unconditional love.  I’m reading a book right now called SICK GIRL about a woman living with a heart transplant.  She’s truly awful and selfish.  She’s a whiner and I can’t believe her man stayed with her.  It pisses me off to no end.  I am single now and on the “market”.  I am nowhere near ready to meet anyone, but I’m starting to surf the internet dating sites…I’m depressed about that alone.  No guy wants to be with a woman over 35.  I’m forced to lie about it.  Plus who wants a girl with insomnia, two chronic diseases, and so much more?  No one.  While Jax can hit the market with a zillion options i have none that even come up for me on e-harmony  – NONE.  “sorry there are no matches for you at this time.”  Can you believe it?? More soon.

Love Sasha.  xoxo

PAIN and DEPRESSION I

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.

HITTING BOTTOM

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.

Jax and Sasha Sexathon

The word sexathon is so dirty, naughty, and hysterical!  I’m feeling much better after the alarm bells all went off when Jax wanted to breakup because of being tired of dealing with my illnesses.  I am still living in fear that he’ll leave if I feel bad for more than a few moments…but I don’t have a choice – I am forced to live with my diseases whether I want them or not.  If Jax ends up leaving because of my diseases then I can’t stop him or blame him.  It is a reality that I am faced with that no matter who I am with there will be some care-taking involved.  He said “I don’t know how to switch back to being your lover after being your caregiver for so long”.

I’m sure he’s not alone, but it’s hard to find anything about this on the web because people are so afraid to admit that they haven’t had sex for over a year due to illness/disease/pain/depression, etc.  Some days are good and others are simply horrific.  Many of you that have read my blog before might know that Jax and I have sexual/intimacy issues due to my diseases.  Ever since my pump got “installed” with surgery last February07 we’ve gone to therapy, tried all kinds of things, but ultimately had not connected in the direct sense of the word sex.

I don’t understand the concept of lover vs. caregiver as it stands now.  Meaning that I am no longer in that emergency state.  I’m at that place where I am stable and just seeking for my life to share that stability.  Jax always reminds me that most guys would’ve been long gone by now. My diseases seem to drive those I live the most away. Or people simply can’t believe the pain can be so severe on and on and on.  Who knows?

If Jax left me wouldn’t this pattern repeat itself over and over in my life unless I drastically changed things?

I’ve finally taken matters completely into my own hands (no matter what I write, the words are all sexual innuendos at this point).  I’ve decided that I need to be willing to change.  I think it’s been really easy for me to blame Jax for no action, but then I realized I haven’t been the first to initiate things in twice as long.  I used to try to initiate, but would get the subtle rejection so I stopped trying.  I realized that this was ages ago so it couldn’t hurt more than it already does to be the initiator.

I put my pride aside and bing bang boom… things are starting to work out again.  We’re totally out of practice, but at least we’re still able to have a good time.  We giggled and laughed and made fun of our selves for being out of shape.. and I tried to think around my RA (try doing repetitive hand motions when you have severe RA!!).  I mean, I cant even masturbate as I mentioned before because my RA is so bad.  I now have to use “equipment” which I loathe. I was an all natural girl!

Jax and I have been in this new phase we’re calling “CHANGE”.  We made a promise to each other to change at least 1 thing per day.  This can be doing something differently than before, doing something new, or simply switching who leads something we’ve done a lot but never been the leader of doing.  We’re going to join the YMCA so we can start working out (so I can lose those last 30 pounds that are lingering since that damn prednisone. We’re going to go to bed earlier, and I’m going to eat only a liquid diet for lunch for a bit.

I’m so grateful Jax did not leave me. (<–Read the background on this). I would’ve always tied it together with my weight being higher now than ever before (from the prednisone).  What would I do if my RA magically went away with my pancreatitis? A rhetorical question to be sure!

love Sasha,xoxoxox

Safe Journeys.

Traveling with RA Part2

A wonderful reader emailed me about a followup to my “traveling with RA” and asked some key questions.

Dear Sasha, … I have a wheel chair of my own…I read on American Airlines website you can check it free of charge.  …Checking my own worries me. Also, I did not realize they could provide you with a chair.   Do I need to call the airlines ahead of time if I just want to use one of theirs? And do they let you use it until you actually board the plane? Oh, and thanks for the tip on the Enbrel Traveling case. I didn’t know about it either! I ordered one today, along with a travel sized Sharps container. I had no idea how I would manage that.  Will they search my bags for my medication? …I am probably worrying myself unnecessarily!  Thanks for your blog, it really does help. And I hope everything is going ok for you!

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MY RESPONSE:
• See Traveling with RA Part 1 for the full scoop and info on trolleys and much much more!
• Would you like to add to this travel list?  Simply send a comment and we’ll add it to our list.
• I’m a frequent flier not an expert so please do your own research.  Thanks!

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• Be patient with security
• Don’t be nervous – nervous causes anxiety which then turns into a short fuse, frustration, and forgetfulness. All these are a bad idea for traveling.
• Medical Cards: I use the one from medtronics for my pump (CP) and also for Enbrel (RA).  They tell you that you don’t “need it” , but I’ve found that if I carry it out the whole time I go through security that I have an easier time of it.
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• Read the airlines website for EACH airline you’ll be traveling on.  Be sure your medical containers are approved for travel.
• Please do call the airlines to arrange for their wheelchair.  They can arrange it for you when you arrive, but then it is not 100% certain. Best to prepare properly.
• Yes, they take you to the plane – not just the gate.
• I’ve even had them help me seat by seat to get me on the plane from a wheelchair.
• I prefer to go by wheelchair when I’m exhausted even if I was okay on the trip without my cane even.
• Even without a wheelchair I have had an easy time of it since I am patient and don’t rush TSA or anyone.
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• Don’t worry if they search you – it is part of the process. Let TSA do their job. I smile at them and say polite nice things.
• In other words, don’t stress out –  if you have the proper ID cards for Enbrel or your pump you will be fine  (Plus, Enbrel comes with the travel case or can be ordered).
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• Also, I pay the skycap guy $20 to take care of everything for me including getting the wheelchair.  I like this and it works well for me.  If you don’t tip them that big then they might have to send you to the inside counter and it isn’t worth it. They will carry everything and be very helpful.
• You can usually bring a little bit bigger water for medical reasons if you’ve got a medical card.
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• Resources: TSA (Security) Info about traveling with Special Needs/Medical Conditions
• TSA Wait Time Calculator
• Great general advice from TSA to get through security faster.
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Thanks! Sasha xoxo