Fantastic Reader Questions

10 07 2008

I’ve been really enjoying my reader comments so here are a few new ones that I wanted to give a public reply to.  Additionally, there’s a page I call You’re Searching For… Must Read… that might answer more questions you might have along with a past reader comment page, and a Top Ten List I wrote in 2007.  Don’t forget to read “About” above link to learn more about me.:

From Lisa “I found your blog, but can’t get an idea of how old some of the posts really are. I found your blog, but can’t get an idea of how old some of the posts really are.”

Happy to answer this one. I began this site in January of 2007 as a private blog. Then, around November 1, 2007 I made it public along with older posts. I created a page called Chronological which goes in direct order that I wrote the posts. It’s a timeline of the events up until sometime this year. That’s when you can use the calendar (along the right column there’s a calendar and pull down menu that allow you to select posts by date.)

On RA from Jennifer “I just went to the Doctors and he just told me that it is hard to determine if it is my RA or not.. He suggested that i go see an OBGYN and talk to them about it and see what are my options but im 25 and i have a 3 year old so i dont think im needing any help to get pregnant…”

As some readers might know, I am obsessed with knowing the most I can about RA and pregnancy.  My doctors told me I can try to get preggers next fall.  A lot of medications have to cease or wind down for it so it must be a totally planned baby.  But, when I read Jennifer’s email I was shocked!  Please see a different rheumatologist.  An OBGYN can’t do anything for RA and is the lamest advice I’ve heard from a doctor in awhile.  What in the world do RA and an OBGYN have in common?  What a crappy doctor.  I hope you don’t see this Dr for anything else!  For me, RA did NOT show up in my blood!  I have sero-negative rheumatoid arthritis which means that it is not on the blood test, but the MRI show terrible damage that can only come from severe RA.

On RA From CJ “…It’s too bad that insurance companies make you suffer so much before they will finally approve this treatment option. Your weight will be so much better when you are off the prednisone, too. You need to be your own best health advocate…”

CJ was talking about Enbrel vs. Methotrexate and how methotrexate was terrible for her. It was truly terrible – I agree. (Read past pages about my thoughts when on Methotrexate).  My liver levels showed a nice dose of poisoning. My weight has begun to go down (From 176 highest to 167 now thank god!!) but only after I got on Synthroid due to hypothyroid. A number of readers have written to me about…. [Click the “more” below to keep reading many GREAT reader letters on RA and pancreatitis!]  Also, please consider donating $10, $15, or even $50 to help keep this website going & also so I can work with at-risk teen girls this August.  Both are for a really good cause.

A number of readers have written to me about….having hypothyroid AFTER taking steroids. I’m sure there’s a connection there. Just one correction for CJ: I do write about Jax and I, but we’re not married so he’s not technically my husband. There are a variety of reasons we’re not married based on Jax’s fears of me being under too much stress and crumpling over it – well, that’s not entirely true or fair of me to say, but I no longer obsess on it so it is fine with me.

From Dan on pancreatitis: “…(that) led everyone to believe it was my gallbladder….so they took that out and when i saw the doctor for the first time after the procedure, he said “it looks like you have chronic pancreatitis”. That was the ONLY time I ever heard the term “pancreatitis”… I’m always wondering if maybe someone made a boo-boo when they took out the gallbladder… Also, was curious as to what you use for pain. They’re talking about some kind of shot, that I really don’t know that much about yet. I’ve never heard of a pump or the word Whipple. I started out eating a pile of Lortabs then switched doctors and started methadone. I decided to switch to morphine cuz I was so nauseated all the time, but it makes me so tired that I dont want to do anything. Not to mention the constipation. Also, you talk about not being able to walk. I am going through a period now where I have this tremendous pain in my lower back… Ever have anything like that? No meds touch it.  Is this(that) crap something i can expect to have to put up with? “

Dan touches on many great subjects.  The main ones for me are:  I’ve heard that getting your gallbladder out can cause pancreatitis, but I believe it might have already been going on to begin with.  In my case, my gallbladder probably damaged or poisoned my pancreas (according to my surgeon when he saw the scarring on my pancreas when he took my gallbladder out in a dramatic life-saving surgery).

  • For pain:  I have my intrathecal pump which I LOVE and can not live without.  I also take a very low dose percoset (oxycotin) about 2-3 times a day when I eat or have a flare up.  it’s so minor it doesn’t cause constipation.  Before my pump I was taking tons of Demerol (read past posts about my medicine hurdles) many times a day.  When that wasn’t enough it was fentanyl and then oral morphine and had horrific constipation – so bad that I literally had to use my fingers to PULL the poop out of myself – GLAMOROUS I know.  I don’t mean to be disgusting here – but I’m here to talk about the things people are afraid to talk about out loud.  I would literally sit and cry on the toilet while Jax talked me through forcing myself to use a finger to dig it out!  (He had issues when he was a boy and could sympathize).  Then, the state told my GI that he was giving me too many meds and so I was led to the pain management doctor.
  • I love my GI – but you NEED a pain management doctor.  I’m not a doctor so can not advise on the whipple procedure.  My GI told me that it was pointless for me.  He said I’d be right back where I started.   Also, as I read your email I noticed that you are in the anger stage.  It is totally understandable but try to lose the anger when you are talking to the doctor so that they can try to help you.  I know I am not a shining example – I fired my pain management doctor after he tried the neurostimulator on me and it didn’t work.  But then I came to my sense when my true friends told me I was too angry and this was the real cause.
  • Finally, on the walking front – I am not sure what your issue is stemming from – for me it is because I have rheumatoid arthritis (RA) on top of CP.  When the CP flares out of control, so does the RA.

For people with pancreatitis Stephen writes: “I’m a survivor of Necrotizing Pancreatitis, I’m dealing w/ pain of epic proportions.I just want to know what you eat? I seem to eat very limited diet as chicken ,potatoes thats it.I am inspired by the pain management and Im always looking foward to my next doctors visit for the finale cure,and it never comes.I take another vicodone and move on w/ my life.”

Stephen, I share the sentiment “and move on with my life”. It is my motto – “Keep moving forward regardless of the pain.” I don’t think there is any other way unless giving up is considered an option – which it is not for me. There’s always something more we can do to help other that makes our life worth living. BTW Before I had my pump I ate watermelon, potatoes, and fruit only smoothies with protein powder. That was all I could do. It gave me a nice actress body (frighteningly under weight). Even now I go back to that diet when I have a flare up after an attack. I suppose that’s the life with pancreas issues.

For people with pancreatitis: Eileen writes“…I was in hospital for about 6 days on IV and pain meds. When it was time to leave, I was told by the hospital GI to quit drinking, and I would never have this happen again HAHAHAHAHAHHA RIGHT I tried to explain to these wonderful DRS. that this was not brought on by alcohol, but they just shook their head> I have found most of the ER DRS. (and God knows ive been to enough ERS.) are major buttheads who dont really have a clue…”

Eileen’s email was so heartbreaking. She currently has no health insurance and is in sooo much pain. Not only do I understand, but also had the many speeches about drinking. Luckily, I came across a doctor at the UCLA Medical Center who loves his job. He was working for an old doctor who didn’t The old doctor would give me those stupid speeches, but the new doctor began seeing a different picture. Now, this is a REALLY IMPORTANT part of my story: I always took friends, bosses, or colleagues with me to my appointments so that they could see a better picture of who i really am when I am not sick. This really helped. In fact, the Dr’s would talk to my boss w/ my permission of course in a more direct and clear way then he ever would’ve with me alone. This helped get to the bottom of the story. This got me the ERCP which in the end got me another pancreatic attack and then over time to the pain management doctor. MY QUESTION: Is there any way you can get an individual plan? It’s usually cheaper than cobra and often cheaper than people believe it will be without getting it through their job. Also, insist that you never drank more than minimal social drinking.

Well, that’s it for today.  Whew!  That was a lot!  Keep up the keeping it up!
Love, Sasha xoxoxo

PS-  Links you can continue reading that are similar:  You’re Searching For… Must Read… that might answer more questions you might have along with a past reader comment page, and a Top Ten List I wrote in 2007.  Don’t forget to read “About” above link to learn more about me. And of course the Donate page to help keep the site going.




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