ASK MY BED

I’ve been feeling much more positive lately.  I’ve been getting great help for my severe depression through one of the inpatient hospital programs here in Los Angeles.  If I wasn’t in LA I honestly don’t feel I would be getting as much help.  My whole life fell to pieces in September of 2008.  My illnesses began to overpower my world.  I lost the ability to stay on top of everything.

RA still kicks my arse and my joints hate me when I forget to take my enbrel.   I even have reminders in my phone so that I don’t forget.  Pancreatitis is getting a little better because I’ve been making my lunch and taking it to the hospital program.  Now what I really need is time to look for a job.  I hired two people to help me with my taxes.  I can’t apply for disability without the past two years of them… and I am so behind – it’s pathetic.  I’m not sure how my whole life fell apart, but I think that I got so overwhelmed with everything that I couldn’t keep up anymore.  It was an evil combination of anxiety and depression.  Apparently, they both hit frequently together.  I fell behind on every single thing. I lost my self-esteem, my confidence, and any good thoughts I might have had.

I’m starting to put it all (my life and office) back together.  I’ve got some interns on top of my helpers.  In order to deal with my illnesses AND my office, I am forcing myself to nap halfway through the day.  I can’t keep up like they can.  I used to be able to work around the clock, but those days are gone.  I am starting to chip away at my newly diagnosed Diabetes type 2.  There are so many food limitations.  I am hoping that by easing one disease down that perhaps I will help out the RA or Lupus at the same time.

I’ve really enjoyed my reader letters lately.  Thank you so much for thinking of me and sending such nice messages.  I hope to return the favor someday by writing nice things back.

I’ve been thinking a lot lately about writing a book about my journey though these autoimmune diseases, but i’m not yet sure of the best angle.  Does anyone out there have suggestions of the types of books you would read on the topic?

My hand is in too much pain to keep typing.  Love you all, Sasha xoxo

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…

NEW START

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

I’VE GONE CRAZY

That’s right. I’ve felt decent for the past 3 days and have used all of my energy doing the following.  If I had this much energy everyday I could actually change the world.  I used to have this much energy and it makes me simply cry to know it is only on rare occasions now.  So here goes:

1. I started the Los Angeles/ Hollywood Chronic Pain Support Group and set our first meetup as August 2nd, 2009@6:30pm – Everyone welcome. Simply signup and RSVP.

2. Started my new Twitter Account for TypeAwithRA.

Join me on twitter and let me know if you’d like to link up.

3. Started a new group on Illness Twitters.  Not entirely certain of how it all works yet – but here is the link in case you are curious.  Visit Illness Twitters

3a. Clearly avoiding thoughts about something important – ah yes – my severe depression/anxiety that started all as a result of getting so sick, my life falling to shambles and facing the possibility that I have to abandon my life’s dreams.

4.  Finished 2 client projects and only have 4 more to go to get caught up.  I also tackle major stacks of paperwork including bills, health insurance/medical paperwork I need to turn in to try to get financial aide for my health insurance.  If it works I will then post a bit about the process I went through, but so far it is not a yellow brick road.

5. Avoided completing my SSI paperwork.   <<Read on for more on getting or not getting on SSI, an assistant, so many losses due to this disease! and starting day 1 at a mental health program for severe depression >>…

REBUILDING YOUR LIFE

Hi All!  I am bright and cheery today (which if you’ve read ANY of my posts in the last 6 months you’ll know how very rare this is indeed)! It’s the fourth of July, but certainly not what I’m going to write about.  I’m not going to write about Iran or politics or religion.   I’m not even going to write about spirituality or marijuana use for pain – nope – not me.  I’m using today’s blog post to talk about suiting up and getting your game on – – Get out there and play life — Damn It!  

As any and all of you out there with a chronic pain issue OR with loved one in that situation know well our lives all get eaten away slowly but surely by this monster or demon called disease.  Whether it’s a known disease or not – it’s ripping the life force directly out of us – ALL OF US.  I definitely am counting the caretakers in this big bowl also because chronic pain chips away at our tolerance for other things and we start to see life very differently than our peers.  Before you know it 5 years has gone by and what do we have  to show for it other than more pain or worry wrinkles?  Well… I wish i could let you whine and moan about how life is being ripped out from under you BUT that’s not what this post is about – it’s about the exact opposite.  

HOW TO REBUILD YOUR LIFE – IN OR OUT OF PAIN (no matter how excruciating)

I have finally come to understand a few things about dealing with my illness and myself.  Whether you have RA, Lupus, Chronic Pancreatitis and Diabetes ( i have all of those) or some other set of diseases, these are some things i’ve recently come to realize.  I can’t continue to watch my life slip away like this.  Even though I’ve become highly functioning again (nowhere near where I once was) I need to keep a few rules in mind.  I so badly wish i did this the entire time I was so ill rather than waiting 6 years into it.  What a huge mistake.  Now, I’m having to pretend I just moved to Los Angeles in order to cope with the loneliness better.   FIRST RULE:  I MUST CALL… As much as I don’t want to call a single soul, I must at least TRY.  I promise to call at least 3 phone #’s on my call list.  This goes as a rule EVEN if I’m in bed the whole day unable to get up (there are plenty of those).  This should be split up between doctors, insurance company (or business-type call), and one friend.  IF I had done this all along I would not have to be in so much agony over the pathetic stacks of paperwork I still have left to complete.  SECOND RULE: “I’M TOO SICK” IS NO LONGER A VALID EXCUSE.  This means that I must find a way to do the bare minimum of 15-20 minutes of email every day.  It’s horrific to wake up one day and realize your credibility’s in question because you never reply to anyone.  If I need to find a way to hire a helper for ten hours a week – then I need to find a way to do that.  If you pay them $10/hour (more than minimum wage) that’s only $100 a week!  I will find a way to do this from now on.  My life is worth enough to not give up on it.  THIRD RULE: My caretaker is not “my bitch”.  I should try to rely on myself for every single thing possible.  I should evaluate ALL things my caretaker does for me and try my very best to take over some of the responsibilities again myself.   The BIGGEST mistake I made when Jax still lived with me is that I relied on him to wake me up, to remind me to take my medicine, and to remind me to get off the computer (STOP working) and eat.  I was a diehard workaholic because it helped me NOT think about the pain.  Jax never resented me for these, but it was all of this small stuff that ate away at HIS independence.  He needed to be free of me when he was out of the house and in it honestly..but I thought that if I gave him little things to help me with that it was beneficial in some way.  IT WASN’T.  Jax was and IS amazing  – but I’m an adult and even if I’m really sick I can wake myself up to an alarm clock.  Jax had enough to worry about.  

There are so many more items like these.  Perhaps if I’m in the mood down the line I’ll continue to write more of these.  Essentially, I let myself kick and scream a little too much (in my own sound opinion) and therefore I lost so many “friends” in the process.  I kept thinking that I simply didn’t have the energy for it.  And perhaps I only think it’s possible now that I’m functioning again…but I do think I could’ve made more effort even FROM bed instead of totally tuning out.  Now, I’m having to try so much harder to make new friends because I rarely have enough stamina to work a day AND go out socially that evening….  I know all of this is really easy to say I’ll do – and it’s an entirely different matter to actually  do it.  

BUT, simply put I wish I had my old life back.

I was very successful, had a full house of friends, had a “life” outside my back porch and I was full of energy and life – some call it zest. I can recall the zest from time to time but nothing like I used to do.  Now it takes energy to just get my work done each day – much less have the energy to go out or see a movie.  I lost so many “friends” that now loneliness greets me like an old blanket.  It’s awful.

More chipper days to come (so they say).
love, Sasha xoxoxo

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

BURDENS

Thankfully I’m over my beyond deep depression.  Now,  I’m still in a “space”but not like the other day.  I just got so tired of feeling like a total burden on my family and friends.  Well, er um that is the friends that I managed to still have.  And then at dinner with an old friend two days ago it all became clear.  He lost his dad a year ago unexpectedly and he felt very strongly that if y become dead suddenly then you become more of a burden for friends and family than you ever could imagine.  You’d end up taking the most selfish action against them that’s possible.  They’d end up having to clean up the wreckage you’d left for many eons to come.  So that crystallized staying alive for me.  

 

The other thing my friend did was remind me that LA is a terribly hard place to have friends with much time to share.  Most everyone here is trying to reach their next level.  They simply don’t have time to cultivate or manage a friendship that’s anything less than ideal.  So now I’m thinking about moving back to the city I call home (i moved around a lot so i don’t really have an official “home”).  

Well, that’s the scoop.  I hate having to dea lwith al of tis stuff.  I wish I knew the balance alreadu!

 Love Sasha  xoxoxo

Dx LUPUS

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

DATING with a CHRONIC DISEASE

First a bit of goings-on: I’m happy to report to you all that I’ve finally lined up enough work to get me into December without this horrific fear that’s been like a black cloud over me for 3 months.  Now that the reality of the economy has had a bit of time to hit everyone, clients are finally calling again.  I’m still looking for a permanent job.  I think my time for freelancing might be over.  But we’ll see.

I was feeling very low and down this week.  My schedule is totally off since I’ve been doing resumes all night long, then during the day running errands, making necessary phone calls and such, then another night of resumes. Then finally after 2 days without sleep I crash the entire day and feel super crap. It’s my own fault for treating myself so badly and not being able to keep my life normal when I have no regular structure to it.  Jax lives 2 doors down now and I’m still outrageously sad that he’s left me.  We’ve hardly seen a moment of each other this week.  I wrote him an email explaining that I don’t want to date anyone but him, but my friends and family are so worried about me that they want me to date… I’m not sure what to do.

DATING QUESTIONS: If I do start dating, how long do I wait to tell the guy about my chronic diseases?  Do I put Ra and CP in my internet dating page so they know what they are in for? What if I have to cancel our date?  Would I need to admit it’s because of my diseases?  Do I explain my weight is from prednisone and I’m trying super hard to get rid of it?  Do I say I’m going to weight watchers and just starting to go to the YMCA but I’m still heavy. OR do I make no excuses for anything and just let it all remain a mystery. On the nights I’m “unavailable” aka in bed, I’ll simply seem more mysterious.

I need to change my outlook & perspective on this whole thing.  If I can run a company than surely I can take care of myself and my chronic diseases, right?!?!?!  I suppose I’m still upset that I no longer have my support system of Jax.  My support pilot got tired of the ins and outs of illness.  I am still pissy because I never thought we’d break up. BUT I did receive a wonderful letter/comment from M.Midwest. Here are my favorite parts:

All of the frequent drs. appts. and tests and treatments and pain control adjustments robbed us of normal, leisure time together. Sometimes when he felt like going out to dinner or going out with friends I was genuinely too sick to have the energy to go…. In talking to other people in a large chronic illness support group I’ve heard that…It is such a hard fought battle to get used to the illness itself. During the adaptation phase you are busy just surviving and getting adjusted to treatments. Don’t be too hard on yourself. You were trying to get through the HARDEST PART of your life at the same time you and Jax were cultivating your own relationship…Take your time to heal.By the way, I did meet and marry a wonderful guy 3 years later.Take your time please,girl!  Let your heart heal and go slowly. I feel for you and know that you want to date right away. Please wait though.When you’ve been in a long relationship it’s easy to want to hurry up and cover up the pain with someone new. Wait awhile,though. Get through the holidays and heal a bit longer.Thinking of you-been there-and it DOES GET BETTER.

This explains everything I’m going through in a capsule.  Thank you so much.  My folks want me to start dating just to keep my mind off of Jax. But it is amazing how much the idea of dating brings up so many new questions for me.   Maybe I need to find a chronic illness support group in my area?  I looked online and found nothing within 28 miles.  But if anyone has some ideas on this front please do share. I’ll give you more from the maybe dating fronts soon.  So far I’m just trying to remember to take care of myself.

Love,   Sasha xoxoxo

PAIN/ANTIDEPRESSANTS

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