VAN SERVICE

9 03 2010

I am trying out this new technology… Updating my blog from my mobile phone. If it works well then I might be able to continue doing my blog. A few months back I broke my laptop computer and so had to stop doing the blog for awhile.

So… Van service…I haven’t been allowed to drive since December. The reason: I went for a sleep doctor consultation and the Dr freaked out about my questionnaire. What a prick! I simply wanted him to know my insomnia was fierce. It hadn’t occurred to me that the Dr would be able to ask the dmv to suspend my license – in the same day. No test as of this date. The Dr didn’t even care to help. He only cared to make it a massive hardship on me. It was obvious he thought I was a druggie based on my list of meds.

It’s a long process to get my license back. I’ve been very good about not driving at all. I’m on a waiting list for a new Dr’s sleep study. I want to solve this horrible insomnia.

My new list of meds is horrific. It includes methadone! (the usual med I take is levorphenol but the manufacturer is behind so I got prescribed the closest relative. The list is very long including enbrel for RA, methotrexate for Lupus/RA. And even percoset for chronic pancreatitis. There’s synthroid and metformin and so many others I’m on.. And being put back on wellbutrin. No sure I want to be on a weight gainer so may not take this one.

Point is that I found out LA has a van service you can take if they deem you disabled. I feel very lucky I passed that test. I am officially disabled. The van is about $2.25 per way. Not bad at all for door to door service!

So if you have lots of med issues like me..you might want to check out the van service in your city.

Checking out. Goodnight.
Xoxo sasha

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INSOMNIA

29 01 2010

All day I am fighting this intense exhaustion.  All night I struggle falling asleep.  The sky is overcast with a brilliant orange glow.  I want to go next door and climb into Jax’s bed.  I could always claim that I was sleepwalking.  The LA night is restless.,  Helicopters, police sirens, and food in the fridge are screaming at me.  I’ve been off of Enbrel for 2 months.  It’s been insane to feel my disease crawl back through my veins, my joints, my blood.  My feet hurt in ways I didn’t know was possible.

Originally, I got off Enbrel to find out if it was the culprit in m sleepwalking.  That turned into forgetting to re-order it which evolved into delivery to the wrong address.  Now, the full-blown effects of RA are coursing through my body.  The Methotrexate does little to nothing it seems.  Every morning now I can feel the effects of RA wearing my joints down, wearing me down, eating away at my life.

What a horrific disease.  When it is contained, I forget how badly it was destroying me before.  For 3-4 hours every morning I can’t move, think or function.  I’ve never felt the exhaustion of life so vividly.  And I will say again how absurd the name is.  The word arthritis conjures up some lame issue very old people have with their joints.  If I were in charge of “things” the first thing I’d do is give RA a proper name.  One that brings to mind utter untreatable agon and helplessness.  Now I have forgotten how long it takes to feel the beneficial effects of Enbrel.  I think it’s about one month.  I can’t wait. If I wasn’t a freelancer then I would’ve lost my job because of the disease’s evil nature.

Jax and I have a cuppa tea almost every night. He’s very kind that I limp a lot and is always helpful.  Time will tell if Jax changes his mind about us getting back together, but each day I feel it slipping farther away.  Time creates more time.  I hate when people say “at least you have our health”.  I don’t!!!!  I don’t have it in any way.

love sasha xoxoxo





INSOMNIA AND JAX

27 10 2009

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.





OLD BONES

16 08 2009

If you are new to this blog we urge you to check out the about page with the scoop on Jax, Sasha, and her list of health issues that are not allowed to be considered a 3rd party of their relationship.  Er…well… former “relationship” and currently simply relationship.  (Sasha is hopeful that his will change sometime in the future but for the moment she is taking care of herself).   Join us on twitter.com/typeawithra

 

All i’ve ever hoped for has crashed against the rocks of my disease.  I’ve lost everything in it’s relentless cycle of pain.  When I hear shrieking I fear it came from inside of me.  I let out a moment of the pain.  But then I realize it’woms an shouting at her husband behind their door.  How will I have the energy to pick up the pieces that once were my life?  How will I ever explain that my life was meant to be so much more?  How can I still try for it – my dreams, my goals – and weather through this storm?

 

I’m 4 weeks into the hospital program and I’m finally getting better (mentally that is).  I still have massive insomnia even with sleeping pills.  I hate the idea of being on so many medications.  My mom has Lupus also and she just got out of the hospital for severe potassium deficiency. The Dr’s think the combination of meds she was on might be the culprit.  Have a chronic illness is so exhausting!

 

So, below I’ve pasted in the most shocking piece of info I’ve ever learned about Lupus.  The state of New Mexico, where I was born and raised, has TWICE the national average of Lupus.  TWICE!!!!  That tells me that Lupus might be partially caused by environment.  Right??!!  Go ahead and read on about it.  I’ll try to give you more info about this as it comes in.

Love Sasha xoxo

 

Lupus Affecting New Mexico

A statistical study was done by the University of Connecticut Health Center on mortality ratios for systemic lupus. This map shows that a cluster focusing right around New Mexico that has 2 TIMES the national average! The need is great in New Mexico.

Read the article on Lupus in New Mexico.  I find it thin on info and very thin on WHY the stats are like this.  What’s in New Mexico that causes Lupus?  I lived there for almost 15 years, but so did my best friend and her family and they have no issues.  Why do we?? We only lived one block from each other.

If anyone has more info on this can they please send it over??? Thanks!

 

 





DATING with a CHRONIC DISEASE

22 11 2008

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 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





PAIN/ANTIDEPRESSANTS

28 10 2008

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

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

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

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

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

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

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

Love,  Sasha xoxoxoxo