NEW START

31 07 2009

Starting today I am going to change the direction of my writing a bit.  Of course I’ll still write about living with Lupus, RA, Chronic Pancreatitis, and now Diabetes Type 2, but I am in a unique situation right now so I am going to write more diary style from this point forward for awhile.  The reason?  Ahhhhh… And so it begins.

One week ago I started my first day as a partial hospitalization patient of a mental health program to treat my severe depression, to get my diseases to a more manageable level, and to deal with possibly the root of it all  – PTSD: Post-traumatic stress disorder.  It wasn’t until the 1980’s that doctors begin to realize that soldiers returning from battle suffered the same symptoms as individuals who had undergone unspeakable horrors at home.   It was actually a bit of a fluke in a study they were doing that eventually led them to that conclusion.  It’s unclear if Read the rest of this entry »

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JUST LIKE YOU

9 05 2009

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

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

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

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

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

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





DATING – BACK IN THE SADDLE

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 »





1 Year Off Prednisone

25 02 2009

Hello All – Sasha here!  To my loyal readers:  I’m sorry I left the online world for so long – but I m sure that anyone reading this could relate.  I felt like I had to crawl back inside my little cave in my mind rather than expressing it out loud or through words.  I needed to sort it out uptairs in my head first.  A ton has happened since I was last really online.

Briefly this is what has happened:  Jax & I are still split up (and yes i am still crying about it 6 months later).  He still lives one apartment away (joy oh joy) no – actually it is comforting but has mae it nearly impossible to move on.  Jax and I still spend time together here and there and I’ve tried several times to do Jax blackouts for 6 weeks at a time, but we’ve never made it past 1 week (on his side also).  But I have begun internet dating and I’ll write all about that in my next post.  It’s been a tough turn of events since I last checked in.  Last I recall I had just left the Emergency Room where they treated me like I am a drug addict.  I have since found a lawyer who is determining if I have a good case against the hospital.

But the biggest changes have been on the diagnosis front and on the body/mind front.  I’ve had CP for almost 7 years now and RA that was diagnosed in late 2007.  Initially, I took prednisone for it and gained 60 pounds in 5 months. Then I was put on a high dose of Methotrexate that poisoned my liver.  I got off that and was then only on Enbrel (I far prefer the regular needle rather than the sure-click).  My mom has many of the health issues I have was diagnosed with RA in October 08 full blown Lupus in November.  Many doctors will say that it is almost impossible to have both diseases.  They say that you usually don’t see bone breakdown in Lupus patients.  But – my family has never turned up normal in any health matter so it’s not so surprising.  I fired my 2nd Rheumatologist and onto the 3rd  – this time at Cedars-Sinai.  The new one is great in some ways, but less thorough in others  – but it will do fine for now.  This month (February 2009) she believes that I have many of the tell-tale signs of Lupus, but it is not yet showing up in my bloodwork.  In other words, she feels pretty confident that I need to go back on Methotrexate to lessen the possible Lupus issues.  She feels it is a large possibility that my different diseases will eventually fall under the header of Lupus.  So now I am back on a regular dose of Methotrexate.

Beyond these updates I will get more into what’s been going on in my mind over the next few weeks.  I will say that my depression blew up to a horrfic degree and I got put on Wellbutrin along with Cymbalta.  The depression got very out of control and I had begun having vivid visions of how I could remove myself from Earth.  I have finally snapped out of that zone and am back on the ground….maybe not solid but certainly back on the ground.

Some things I’m doing to climb out of depression: (Read on to find out!  Also read on for the Prednisone Challenge – What I’m doing to climb out of that blah also) —-> Read the rest of this entry »





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





PAIN MEDS & CURRENT JOURNEY

16 11 2008

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





FINDING A LIGHT

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