Dx LUPUS

14 12 2008

I’ve had a tough week.  I’m working hard at staying positive, but it is unavoidable to have some pitfalls along the way – that’s how it always goes for the first couple of weeks after an ER or hospital visit.  I went in for a severe pancreatic attack because of my chronic pancreatitis.  I didn’t get treated, the hospital lied to me about calling my doctors and after 4 hours of screaming & writhing in pain I eventually had to take my own medicine and left.  My pain management doctor is furious and said they gave me the “drug addict” treatment which means that the ER team thought I was faking it so I could get meds.  Forget all of the facts 1) my doctor called ahead telling them to expect me.  2) I was in so much pain I was hyperventilating and literally screaming/crying.  3) I was severely dehydrated and was upchucking bile.  4) I haven’t been to the ER for a year and a half.  5) I gave them 3 of my doctor’s phone numbers and they didn’t call a single one but claimed they did.  …and the list goes on.

Jax found out I was in the ER from our building’s security guard.  He’s been so sweet ever since then and has even written xo’s on his text messages.  I truly hope that he chnages his mind about splitting up and realizes we made such a great team (and still do even as friends).  But this post isn’t about Jax or my severe depression or my new anti-depressants as a result.    This post isn’t even going to be about the horrific treatment I get in ER’s because pancreatitis does not sow up in my blood work.  Nope – this post is also not going to be about sex or the lack therein.  It won’t even be about my small vctories making friends old and new and reclaiming my life.  It’s also not going to be about my RA limbo due to changing prescriptions ofEnbrel and thus another lovely month of being off Enbrel more than on. I’m not even going to talk about the anti-depressan Wellbutrin causing these bizarre spacey-head episodes where I feel like my brain is floating in and out of reality.

This post is going to be about the facts.  My mom at age 65 was just diagnosed with RA.  Her hands are gnarled and her fingers and jointy and f–ed up due to it. But it still doesn’t show up in her blood work.  Then, the day of my ER visit she had a pancreatic attack for the first time in her life – but the bloodwork and MRI show no issues with her pancreas.  BUT she was just diagnosed with Lupus at age 65.  She has EVERYTHING I have except she also has heart issues.  So essentially, Lupus did not show u in her bloodwork until she was 65 years old but she’s had it all along.  Dr’s rely too much on bloodwork.  It’s a flawed system.  There’s got to be another way.  I understand they must rely on blood lab results for health insurance reasons… My general doc says the likelihood/chances that I have Lupus even though it’s not showing up in my bloodwork just shot through the roof.  In a way it would be a huge relief to be able to tie all of my autoimmune diseases together under one roof.  My Dr said it makes sense given that the pancreatitis and RA don’t show up in my bloodwork either.  I’ve simply had the marker for inflamation through the roof – as did my mom in her lab results for years.

I am torn between sadness, confusion, and a deep desire to grab the net hot man I see and ask him to have sex with me right now while I still can before my body falls part even more.    I’m going to start dating via match.com or maybe nerve.com.  The only thing getting me through right now is faith and the belief that I’ll find someone out there that won’t be afraid of breaking me in two when we are shagging or something more romantic. I’m just hoping I don’t scare any prospects away.  Now I just want to go to sleep.

Love, Sasha xoxoxoxo

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4 responses

9 02 2009
raandme

I’ve noticed you havnt written in awhile. I hope everything is ok!

1 01 2009
matt

my wife (god bless her) has chronic pancreatitis. for the past six months she has been hospitalized several times for it. her pancreas is enlarged as can be seen by a x-rays. when she has an attack; she throws up blood. she has had at least 50 units of blood received in 2008. her hemoglobin count yesterday was 8.6 (which is a little low). when she has a pancreatitis attack, they can tell because of something in her blood is elevated. i am very concerned because they are not sure why she is throwing up blood and why there is blood in her stool. one idea: when she has a pancreas attack (which makes her vomit); the vomiting causes tears in the digestive system. it makes sense, except that sometimes the first time she vomits–there is blood in her vomit. she has also had to endure (from some medical people) condescending attitudes about her condition.

18 12 2008
Donna C

Sasha,
How are you doing?
Donna C

14 12 2008
Leslie

Hi Sasha,

Wow! It sounds like you’ve been through a lot in the past few weeks. I totally feel you on the bloodwork thing. When I first started going through tests and stuff, my PCP thought I was faking and only believed me when test results showed elevated ANA and RF. I would have been totally screwed if those wouldn’t have shown up. I also understand what you mean when you say that you want to tie all your illnesses together. When I finally got a diagnosis, at first, I was only diagnosed with RA. And as much as lupus sucks, it made a lot of sense when I found out that I had both.

I guess the reason I’m telling you all of this is because I want you to know that you aren’t alone and that there are people out there like you going through the same things.

Be as well as possible,

Leslie

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