9 05 2009

If you don’t already know me, my name is Sasha.  I have 2 confirmed chronic diseases and possibly Lupus although at the moment it’s been confirmed by some doctors and not by others.  I’ve finally gotten my pain somewhat under control and so now there are long stretches of time each day where  I’m living on the “other” side of constant pain.  It’s a miracle  of modern science.  But, the next things I want to tell you about will never overshadow the pain I was in.  If you live with chronic pain, please know that the following complaint is not meant to take away from what you are currently feeling.  There is nothing worse than chronic, constant, severe pain.  You lose your life and your being to it and you’re not in a place to do anything to fix it – no energy to do anything about it.  So I really do understand how nothing can really ever be as bad.  BUT I’m discovering that life just after chronic pain starts to subside also has its massive hurdles that equally make you feel out of the loop with life.

My chronic pancreatitis pain is starting to creep into the background of my mind as long as I stick to taking my medicines at the right time & also stick to a basic food plan.  But regarding RA, I’ve been off of Enbrel for a month now (by accident and certainly not on purpose) so that writing and typing is VERY painful so I have to keep this short.

I’m trying hard to get my life back together.  One thing that’s come up is the ROOT of where my anger came from and very possibly the root of where my diseases came from.  What I’m talking about is that now that the pain is mostly taken care of – now the reason for the pain is re-surfacing.  My therapist says that it is very normal in chronic pain patients.         You see, I am a survivor of sexual abuse as a child and also extreme violence.   My western doctors feel that this angush may have manifested as these diseases.  I don’t deny that this could be true.  So now that they’ve gotten my pain under control  I’m left with the reasons my body revolted.  I’ve not been very equipped to deal with it so I’ve reverted to old behaviors.  When I was 12-25 I used to cut myself to feel better – a bit of a release.  But now I am 36 and found myself cutting again.  Its an awful situation and totoally inappropriate for someone that has owned a compnay and had a number of employees.  I’m supposed to have my life together, right!!?!!

This has been a really tough time for me. I’ve been totally off-balance in my life lately.  I don’t know when to sleep, when to be awake.  It’s such a mess.  My doctors are all worried as are some relatives and close friends.  My docs have discussed joining a day program with therapists to try to help. I don’t know if my insurance will cover it.  I really need something intensive right now so I am okay with the idea of being checked into some place/facility.  I just want to feel whole again and to get better ASAP.  I never in a zillion years thought I’d wat to get checked into a mental facility.  But then again, I’ve never been this off balance before.

I can’t write anything else tonight except to say I’m going to hang in there and try to put structure back into my life.  But for the moment I am getting solid sleep and that’s so rare that I’m thrilled.      –love Sasha xoxoxox

PS:  For those of you that have been reading for quite some time I wanted to let you know that Jax has been extremely helpful through al of this.  He even swept my place up after I hit rock bottom by throwing every piece of glass in my kitchen.  He then called all my doctors and family to try to let them know what’s going on.  He’s been a ray of hope.  I know it means the likelihood that we’d ever get back together is even more slim, but not only is that not even important right now to me, but Jax knows me better than anyone and is one of the only people that could breakthrough my walls to help me.




5 responses

29 06 2009
More Medical Travel Info

We often about things we do not have and need in life…what we do not realize there are such brave hearts like you who cope up with difficult life situations and fight chronic diseases and yet try to be happy.Hats off to your courage and great attitude.

23 05 2009


I’m so very sorry to hear you’re going through such a hard, hard time right now. At first I thought I could relate to this post simply because I, too, am currently, accidently, awfully off of my enbrel. Since I started taking it a year and a half ago, enbrel has been my miracle drug and it’s hell on earth being without it. The knowledge that there will be days, if not weeks, till I have it again is somewhat sickening, even more so than the pain.

But sadly, as many people with chronic, unmanagable autoimmune illness, I also relate to your difficult, abused childhood. I wish these things weren’t related, but the more and more patients speak up about their pasts, the more it seems we multiple autoimmune folk have had pretty tumoltous pasts. All I can say is take the time you need to feel whatever you need to – your body is certainly going to make sure you do – because denying it will only be worse.

If you ever want a quick laugh at this whole sorry situation, I write a comic about my life with chronic illness – http://acomiclifeindeed.wordpress.com – and maybe it will cheer you up a little, or at least, help you feel like you’re not the only one. Best of luck, hon, I hope it gets better, soon.

– Miss Waxie

19 05 2009
Nurse Triage

You are a brave human being and have come a long way from where you were and I am sure there is a long and lovely path for you.All the bst for your life.

17 05 2009

Sasha, I am so sorry to read your latest post and hope some therapy is going to give you some light. I havent commented here before ( I dont think so anyway!) and regret that as I have been so full of admiration for how you have handled and approached all life has thrown at you. And that has been a bundle and a half!

Just know that there will be many people out here in Cyberland that are rooting for you and send love and good thoughts your way. Hang in there and I wish you many more nights of solid sleep. Good to read Jax is there giving support and caring…but anyone who has read your story would expect that he would be. 🙂

Blessings….. Annella

11 05 2009

I am so so sorry that you have to go through all of this. I think you’re very brave to be able to share this with us. Thank you. I really feel for you and hope things get better.

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