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.





I’VE GONE CRAZY

20 07 2009

hcpsgpic

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 >>… Read the rest of this entry »





MEETUP LOS ANGELES

12 07 2009

Here’s an article sent to me by the National Pancreas Foundation’s Newsletter about dealing with keeping your job when you have chronic pain: “Protecting Your Job While Coping With a Chronic Illness

The Hollywood Chronic Pain Support Group Logo

The Los Angeles  – Hollywood Chronic Pain Support Group will have it’s very first meeting AUGUST 2nd, (Sunday) at 6:30pm-9pm.  Join and RSVP here.

Today, after getting fed up with the utter lack of support groups for anyone in my situation with multiple autoimmune diseases OR chronic pain – I decided it’s about time I take some action.  My blog is called “Type A” with RA afterall.  And being a good Type A person – I feel it’s my duty.  Not that I have the energy to do this – but I need to reach out so badly that I’ve decided to spend my energies on an actual support group rather than continuing my never-ending search.  Also, I want a place where I can actually talk about forced sober living with pancreatitis, death and pancreatitis, what to eat with any autoimmune disease, what actually helps for lupus, death and lupus, and all kinds of things that really matter to me.  Beyond that, after my last almost meeting I had received quite a number of emails asking when the next meeting would be.  So below I have pasted the exact text that is at this link on the new meetup page.- but from this link you can sign-up to attend.  We’ll welcome any and all out of town guests.   If you run a blog, could you mention this meetup?  Well, I have my first client all week – so I better get on it.   – Love, Sasha xoxo

This is the welcome message I wrote:

Welcome to the Hollywood Chronic Pain Support Group!
Thanks so much for joining- You are truly not alone!

We look forward to having you at our next meeting. We are brand-spankin’ new group, but committed to getting together once a month to talk about our struggles, triumphs and lives.  Please RSVP for our next meeting.

I’m Sasha, your Group Organizer.  I almost wrote “reluctant group organizer” because I live with 4 diseases that often take me down for three days at a time.  I have Lupus, Rheumatoid Arthritis, Chronic Pancreatitis, and Diabetes Type 2.  I have enough energy to get the group started, but as we begin to meet I will ask each member to take on a very small role of participation.  This way it will be more doable and sustainable to meet each month – I know we all need it!

I was surprised or rather, shocked that there are so few support groups around the globe.  I have searched for quite some time to find a support group here in Los Angeles.  I’m guessing that you might have done the same.  The meetings will be structured so that we all get the very most out of them.  Everyone likes to have snacks and drinks, but if you’re like me – you don’t know what you’d say without some icebreakers.  For this reason we will have a guest speaker briefly give their personal story followed by individual sharing on a volunteer basis.

Please Note: I’ve currently closed the group mailing list until we have a member managing the list.  I can only do so much – –

SOME BASIC AGREEMENTS:
1) In order to best serve the group we ask that caregivers do not attend with you – unless you are a caregiver and your mate is not going to be attending our group.

2) Each meeting we’ll pass the hat to donate what we can to the organizers.

3) If you’re seeking anonymity – we will honor your request.

4) We’ll all respect each others abilities.  Each of us may come to be temporarily too ill to fulfill our role/responsibilities.  We’ll all help out.

END ###





AUTOIMMUNE DISEASES GALORE (Part I)

27 05 2009

AUTOIMMUNE DISEASES GALORE (Part I)

Thank you to all of you wonderful readers out there who have sent the loveliest messages to me.  Encouraging words are  awesome, but knowing that behind each email, comment, or call that there’s someone who knows my physical and often my mental pain – that’s amazing.  As many of you would concur  – I would not wish the pain of RA, CP, or any pain of the heart on anyone.  

THE OVERVIEW

My heart and spirit are much lighter today then in many months.  Why the difference?  First, I was pulled off of Wellbutrin (an anti-depressant) and within 7 days my entire outlook felt brighter then it has since November (when I went on it).  I am glad i tried it out – I really did need to be on anti-depressants at the time… but I am shocked at how suicidal it eventually made me feel.  I broke all of the glass in my kitchen, cut up my arm really badly (on purpose), then cut up my legs and other arm when that didn’t seem to do the trick (not to die, but simply to cause myself that numbing pain that all cutters know so well).   It was a nightmare, but for the first time I see it was really a call for help.  I needed help so badly.  I was/am deeply lucky Jax (my ex-boyfriend and best friend) heard all the glass breaking because he came over and helped me clean up.  Then he called my parents and doctors.  Of course I feared he’d want to stay far as hell away from me after that but it’s had an odd effect I’ll write about in a minute.

So this is the state of things now:  I just got diagnosed with my 4th autoimmune disease: DIABETES!  I had pre-diabetes for the past year, but now it is full-blown diabetes.  This is the cause of my never-ending weight battle.  Now I’ll still have to work out 3-4 times a week, but at least I’ve begun moving the scale (and not just under the table).  So here’s my current autoiummune disease list: Rheumatoid Arthritis, Interstitial Cystitis, Hypothyroid, Diabetes 2 and then Chronic Pancreatitis. And I also have the tentative Lupus Dx sitting in the wings.  I always wonder if it all tied to Lupus.  Anyhow, the news did not shake me the way i would’ve thought.  Now I think it is all hysterical.  I mean, it’s literally gotten absurd.  (Read more about my personal life on this subject here)  I’m sure it’s all related in some way that modern medicine can’t decode. 

 

THE DEPRESSION/GETTING HELP

Now, about my severe depression.  I am feeling a lot better, but my Dr’s have told me it is very usual to fall into this trap AFTER the pain is finally under control.   Read the rest of this entry »





PAIN’S HEAVY PRICE

19 04 2009

SEVERE DEPRESSION-THE ALONE-NESS

It’s not the sort of thing that I like to admit is happening. It’s not the sort of thing anyone would want to admit.  It’s definitely not party conversation.  2 days ago my doctor talked to me about possibly putting me in the hospital  – not the regular hospital – but a facility…As in getting committed.  All I needed to say was one extra sentence or actually word- and I would be there right now.  All I needed to say was the truth…”Have you thought of harming yourself or others?”  How do you answer that question when I’ve even looked up possible locations to drive a car top speed into a concrete wall?  How do you answer that when you’ not only thought about it, but even gotten to the stage of trying to research if the airbags popping out would prevent me from being dead.       I don’t want to be dead, nor would i ever do this, but I’ve thought about it.

Pain comes with a heavy price.  Most people don’t understand long-term pain.  they always say stuff like “get better soon” or “i hope you’ll be feeling better the next time I see you” or they go on and on about their healer or raw foodie friend that cured their lupus completely simply by eating a raw food diet.  They seem to think I want to have a chronic disease.  They seem to think that it’s in my mind   – and that this is the reason for my physical pain.

The toll is much larger than just physical pain.  It’s much larger than absolute alienation from friends and family.  It’s alone-ness that I never could have imagined.    All of the hours I spend pretending to be normal are wasted hours.  All of the hours back and forth to the doctor is time rolled up and tossed away.  Most of all it’s the alone-ness I am left with.  Some of my friends started this journey with me and only last a week.  Others lasted several years, but now that I’m going into my 7th year of chronic pain I feel as if everyone has left.  Everyone is over it.  My doctor’s are there  – and that might be the only thing keeping me from completely breaking down.  Two of my doctors stepped out of their uniforms this week (figuratively speaking) and hugged me, grabbed my hand, felt my real pain from all of this.  It was the most human thing I’ve seen anyone do in such a long time.  it did change my mind about wanting to stay here.  they both urged me to remember that this depression is temporary.  It doesn’t feel temporary.  I feel like I’ve been here for a very long time.

I was thinking about the steps that led to my big crash into ultra-severe depression.  The main one was over the holiday when my own family couldn’t take it.  My own family left me.  We talk on the phone now, but I know when it gets really hot that they can’t handle it- and i’m the first to go.  My dad couldn’t take me being in pain and so instead of having sympathy for me he threw me out. , all because I had to work over the holiday while he felt I should be resting.  My brother disowned me because I was in so much pain after playing soccer with his soon and I complained about them having nothing I could eat for breakfast.  I thought a lot of people got grumpy at breakfast-but with my physical pain on top of it I’m a “complainer”.  And no one comes to my defense anymore.

I’m also now open game for rude and hideous comments.  An acquaintance I know took me to a concert last week but spent the whole time telling me how fat i’ve become.  I’m not actually fat at all in any city outside of Los Angeles.  I’m average after the prednisone, but not fat.  She went on ad on about how she would kill herself if she got as fat as me.  Naturally i will not ever spend another second with her, but the damage was already done.

The part that is still the hardest is that Jax left.  I’m getting over it – I can feel that – but I’m still not over it.  I don’t know if I ever will be.  Right now it doesn’t feel possible.  Mainly because it doesnt feel possible that anyone will ever like me again.  I am simply exhausted and can’t think of good things right now.  Facebook has brought some good old friends into my life which does give me hope that at least I might have friends in my future, but right now the ones I have in LA can’t be bothered to spend any time with me.  LA people tend to be overly selfish.  (Not the ones born and bred here btw – just the transplants).

I’m ready for good things to come into my life.  I am open to all good things coming into my life.  I invite all good things to come into my life.  In the moment my depression is in the passenger seat.  I just want to go to sleep on the couch again – I’m not into sleeping on the bed.  it has too many memories.

Love Sasha xoxo





RESOURCE SERIES 2009: RS09

11 03 2009

RESOURCE SERIES 2009: HOME PAGE

Hi to all.  I want to tell you about my brand new dating experiences from this past weekend, but I have far more pressing issues that I want to discuss.   Recently, a number of readers have written in that either they or a person they love deeply is in the painful stage of suffering from either chronic pancreatitis, Lupus, or RA.  So today I’m starting the RESOURCE SERIES 2009 chock full of  resources, suggestions, and help for you whether you are the patient or the caretaker/caregiver of someone living with chronic pain.

I’ve also decided to begin a consulting business to help patients like me, but those that are at the start of the cycle of getting a doctor, knowledge, help, and some answers.  Please click on my new page Q&A for info on how you can sign up for this service.    If my site has been useful to you in some way please consider donating – any amount will help dramatically.

  • DEALING WITH DOCTOR’S OFFICES/STAFF/DOCTORS
    The main issue that keeps coming up in the comments from you all is that you are in a viscous pain cycle with no end in sight – and too boot the doctors and staff are treating you poorly.  Since I’m not a doctor, I can’t help to figure out your disease, but I can offer help in dealing with life.  Each of the following links to an entire page of awesome/incredible info that you need to know.
  • Coming Soon: Organizations that help you if you’re seeking financial assistance for your medications.  Also links to all of the dating and living w/ a lover when you have a chronic disease.  AND Don’t forget I can be hired as your own personal assistant and I’ll  deal with these issues for you.  Also a full round-up of the government’s SSI/SSA disabilities policies.

OTHER LINKS TO RESOURCE PAGES

Here you’ll find answers to everything from how to travel with medications and RA, losing weight on Prednisone, neuro-spinal stimulators, intrathecal pumps, J-tubes, and much much more.  If I didn’t answer your question here then leave a comment OR consider hiring me as you personal consultant to get all the answers you need about getting disability checks, financial assistance for medications and also with how to deal with health insurance companies, plus much more.   The page Medical Definitions can help with any terminology you are unfamiliar with.              

DO YOU HAVE A A COMMENT OR STORY YOU’D LIKE TO SHARE?  PLEASE LEAVE A COMMENT BELOW.

Love Sasha. xoxo





DEALING WITH DOCTORS: RS09

11 03 2009

DEALING WITH DOCTOR’S OFFICES/STAFF/DOCTORS:

This post is part of my Resource Series 2009. –Sasha xoxo.  Also, learn more about my new  consulting services for dealing with an autoimmune disease or chronic illness.


1) FINDING A DOCTOR: Always start with your general doctor’s advice. Don’t feel forced to stick with that doctor. Then branch out to ask any of your other Dr’s advice. If all of that is not possible then here’s my approach: I like progressive teaching hospitals. They are usually up with the current gear and practices.

For example, in LA I would go to UCLA or USC’s website to check out the list of doctors. Most cities have websites with reviews. Also, your health insurance website usually has reviews.

An example search: Type in google “best doctors in (city here)” . I found this site in LA: LA Doctors and even the Yellowpages now has reviews. It goes on from there. [note: Due to my own privacy I am not going to make referrals to my doctors.]

2) Earlier posts were written on this subject.  Links to the most useful ones are on the Resource Series 2009 home page.

3) AT THE OFFICE: You are almost certainly NOT CRAZY. (please ignore that sentence if you’ve spent some time in a psychiatric hospital OR if you are unable to have even 1 friend because no one understands you).

(Read on to get all of the Lessons that will help your Doctor’s Office Exprience Improve Dramatically)—-> Read the rest of this entry »