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.

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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 »





END OF THE WORLD

31 03 2009

I’m taking a little break from my resource section I’m creating to talk a little bit about myself.  Beyond being just Sasha, I’ve been stuck in this awful depression for almost 8 months or so.  You see, I’m an extrovert  – I love people.  I thrive when I’m around a lot of people.  I used to have a huge network of friends and colleagues.  But when I got sick ad the years passed – 1,2,3 I lost almost all of them.  A friendship can only thrive when 2 people are putting there all into it.  I had no energy for myself, much less a friend.  Over time I watched my relationship with Jax dissolve.  He was always so helpful to me and very loving…but he couldn’t deal with knowing I was in pain.  Even as a friend it’s hard for him to know I’m in pain.  Is that what started the depression?  Or did the pain start the depression?  I guess it’s the story of the chicken and the egg.

Over the past year and a half I’ve been getting so much better in most areas.  During this time I’ve taken a good hard look at my disease and come to realize that there were parts of it I was hanging on to.  I know that’s so hard to explain.  I do not want to be in pain nor do I want any disease at all. But there was a part of me that became familiar with that ill part of myself.  I’ve been doing a lot of visualization exercises where I release the disease that has grabbed a hold of me.  In a kind of meditation, I close my eyes and watch as I pull the tentacles off of my body – and breath in fresh, clean new air to fill in that part of me that might have chipped off.  I grow back healthy cells that are not in the mood to fight my own self.   Read on for more on Internet Dating with a Chronic Disease, Don’t drink the liquid warning for those with CP, Fentynl & Prednisone effects after 1 year. —> Read the rest of this entry »





NO WAY OUT

16 03 2009

Today I’m taking another break from the Resource Series 2009/Next entry will be about SSI Benefits) .

The following was written on a very bad day.  I considered taking it down, but left it up so others can see the true range of emotions we go through (people with multiple autoimmune diseases).  Also, I did receive a VERY SWEET note from the original author of the email that upset me.  I’d like to make it clear that this post probably had noting to do with the commenter and everything to do with having a bad day.

NO WAY OUT

Yesterday, I received a comment that has upset me after this weekend’s post (which is rare for comments to actually get to me) – In a nutshell, I explained I am still severely depressed after about 8 months.  It takes actual effort to not get in the car and drive into a brick wall at top speed. [Please don’t worry about me on that front – i have a HUGE project due in August and I will certainly see that through.]   So let me explain what I’ve done to get out of this cycle.  Yes, I am on Cymbalta (anti-depressant & helps with pain level) and have been for 2 years.  I”ve been on wellbutrin (another anti-depressant) for about 4 months.  I exercise daily for at least 40 minutes at full fat-burning speed.  I alternate gym/intense hike/workout videos (I like the Biggest Loser and Carmen Electra’s Striptease series).   I’ve even adopted a kitty cat.

I expressed that my depression has a hold on me like tentacles latching on.  I’ve told all my doctors.  I lost my company in November 08 due to the economic crisis.  Several different clients have decided not to pay thousands of dollars after months of my hard work.  Everyone has an excuse.  I can’t afford “talk therapy” and have done research for affordable therapy – but frankly when it comes to rent/food or therapy – it’s no contest.  [that’s why I’ve asked you to donate if you’ve gotten something out of this site or to hire me as your personal asst to deal with your medical paperwork.].  Now regarding friends: like many of you reading this site I love having friends.

(Read on for living life from bed, not being able to be a part of the crowd, feeling alone and alienated from the life I once had)—–>

Read the rest of this entry »





BREAKDOWN CENTRAL

15 03 2009

I’m taking a little break from my resource section I’m creating to talk a little bit about myself.   Beyond being just Sasha, I’ve been stuck in this awful depression for almost 8 months or so.  You see, I’m an extrovert  – I love people.  I thrive when I’m around a lot of people.  I used to have a huge network of friends and colleagues.  But when I got sick and the years passed – 1,2,3 I lost almost all of them.  A friendship can only thrive when 2 people are putting there all into it.  I had no energy for myself, much less a friend.  Over time I watched my relationship with Jax dissolve.  He was always so helpful to me and very loving…but he couldn’t deal with knowing I was in pain.  Even as a friend it’s hard for him to know I’m in pain.  Is that what started the depression?  Or did the pain start the depression?  I guess it’s the story of the chicken and the egg.  My close friends I have now all seem to live far away.  Many of them joke that I should have a whole season of House devoted to my medical issues.  I only wish i had House’s team to cure me for good and forever!

(Read on about Internet Dating, Prednisone Weight Loss, CP Patients Beware of CatScans!, and Getting Un-Depressed) 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 »