ACHY BREAKY BONES

8 09 2009

I just haven’t been feeling like writing lately.  I’ve been trying very hard to change bad habits and to get my shit together.  So, I’ve restarted my company.  I’ve hired new teammates and have gotten things off the ground again.  The first major task: finances.  I’ve got to get my finances back in order.  I’ve really let it slide the past two years to the point of horrible.  BUT – I can’t get on SSI (disability) unless I have my past two years taxes.  I also can’t get any grants for ANYTHING without the past two years of taxes.  It is truly a mess.  I’m still in the hospital progra 3 times a week working hard on unraveling the years of abuse along with my health issues.  I have so much work to do before I can leave the hospital program.  I’m grateful for it – it’s really helping me get my life back together.

I want to go to sleep!  I have horrific insomnia and forgot to take my medicine tonight.  I tried Geodon but it made me overly tired all through the next week.  So now I am trying neurontin. My Dr is also going to raise my dose of Cymbalta in the hopes of getting me above super depressed.   I’m still so upset that I lost what feels like my entire life to this disease (CP and RA and Lupus).  I have more Lupus symptoms and wondering why it’s still not showing up in my blood work.  UGH!

So last item for the day:  I got this awfully sad email/comment from a reader.  It’s so awful because her husband is only 29 and has chronic pancreatitis – but is still actively drinking.  I couldn’t imagine drinking alcohol with pancreatitis.  My thought: it must not be hurting him as much as mine hurts me.  It’s impossible to have pancreatitis a bad as I have it and even conceive of drinking alcohol.  BUT maybe the difference is that I don’t have pancreatitis from drinking… mine is idiopathic – meaning no reason found.  Well, that’s illogical but…

So it got me curious – Does drinking make RA worse?  How about Lupus? I would imagine it must – but since I don’t drink i can’t say one way or the other.  So I’m setting up a poll to ask exactly this question.

That’s it for me for he night!!  Thank you to all my readers.  May your bones and joints not hurt as much as mine do right now!!  Love, Sasha.

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Awarded

8 09 2009




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!

 

 





WORLD IS BIGGER

9 08 2009

So from time to time you may notice I mention my ex Jax quite a bit.  That’s partially because he’s my neighbor one apartment down (where he moved when he split up with me), also partially because I’m still in love with him, also partially because he’s a huge part of my life.  BUT I want you to know I think about a lot of things and Jax is only a sliver of that time…okay – maybe a large chunk but…  He’s been incredibly supportive of me through this entire illness and now that I’m in the mental health program he’s invested a large amount of time making sure I’m good.  Luckily though I do have other people in my life….but not very many any more (okay – in LA maybe 3 total).  Almost all my former acquaintances ran off when it became obvious I wasn’t going to get better right away.

There’s a saying that I even heard yesterday that people give to a mental health patient meaning the best ,”you have a mental illness…and you may feel all alone, but if you had a physical illness people would be there for you so there’s no reason not to expect the same”.  It infuriates me because it isn’t even true.  Most everyone disappears.  It’s so mentally painful. 

Right now I need friends so badly.  It’s… Read the rest of this entry »





CUTS THROUGH MIDDLE

9 08 2009

Pancreatitis is an evil and viscous disease.  It destroyed me for so many years and I’m only 36 now.  I get loads of emails asking if a certain pain can be pancreatitis. I always want to ask “has it ruined your whole life? Has it made you keel into a ball for thousands of hours?  Does it activate right after eating?  Does it cut from the center of your body as if someone stabbed you with their bayonet and then left the bayonet in and then poured turpentine on the wound (front and back)?  I’ve never experienced anything more painful in all my life.

Truth is I don’t know if you have pancreatitis.  I hope you don’t.  The first time I ever had a pancreatic attack it felt like something exploded inside of me.  My own personal Hiroshima.   I’d never wish it on any enemy.  Managing it took me a long time to learn.  I have to avoid anything overly tasty, seasoned, spicy, acidic, too big (little bites better), butter, anything with alcohol, too much food eaten in one meal, high fat foods (absolutely not bacon), foods that cause gas normally (broccoli and loads of beans) and sometimes none of these items are done and I still get massive pain.  

 

Right now I am trying out a fake beer to see if it causes pain.  I try hard to only test out new foods on weekends when I have a little down time.  Fancy restaurants are the worst offenders.  The chef gets pissy about making food without alcohol or butter.  Alcohol does not all burn off as many claim.  I have t steer clear of it all together.  

Hopin this has been helpful,

Sasha xoxo





PUMP FOR PANCREATITIS

8 08 2009

 

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… Read the rest of this entry »





PAIN AND BONES

7 08 2009

I found this in my drafts folder and it’s amazing how depressed I was only a few weeks ago.  The program I am now in is really helping me get through this depression.  Even though I’m not in this head space now – I think it’s important to reflect on what a bad place I was in:  So I have RA. I hate it.  I have Lupus.  I hate it.  I have Chronic Pancreatitis  I hate it.  I have Diabetes Type 2 and I don’t even care.  Why?  Because it is truly the least of my problems – even knowing that for many people it is a major issue for them.  For me it is just a drop in the bucket.

I hate myself this week.  I hate that I’ve lost everything because of chronic diseases (or at least it feels that way).  I’m trying to get my life back on the right tracks, but I feel so depressed lately that I can barely motivate myself to do anything.  I’m losing work – of that I am certain.  I’ve lost my business, my true love (Jax – you can read more on this in the About section).  I’ve lost so much I don’t even remember all that I’ve lost.  My legs are always swollen and I just can’t seem to find that “happy place”.  I used to have it.  I used to be in it.

I started taking a new medication this past week and it made me so groggy I must’ve snoozed momentailry at a red light and accidentally tapped the car in front of me.  Only it is more like a car accident than a tap considering the cost of the damage.

My hands hurt too much to keep typing… but I wish I could keep telling you about how shit things seem right now.  I’ve lost my sunshine and I don’t know how to get it back.  I did start a prgram this past week for dealing with my depression.  I NEVER had deep depression until these diseases wreaked havoc on me and my life. Well, that and the issues from my childhood.  UGH!!! There is far too much to deal with and unravel about my life.  Why can’t I just write it down on paper and get the fuck over it??? I want to! I certainly don’t want to sit here and bitch about it!!

How can I get ME back??

Love Sasha xoxo

PS – Join me on Twitter: @typeawithra
• Also Join me on IllnessTwitters • And on Meetup
• Come to the Hollywood/Los Angeles Chronic Pain Support Groups next  Meetup: September 13th @6:30pm