Fantastic Reader Questions

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.

When Will I Die From This?

“Chronic pancreatitis does not resolve itself and results in a slow destruction of the pancreas. Either form can cause serious complications. In severe cases, bleeding, tissue damage, and infection may occur. Pseudocysts, accumulations of fluid and tissue debris, may also develop. And enzymes and toxins may enter the bloodstream, injuring the heart, lungs, and kidneys, or other organs.“  –wikianswers.com

Today i was thinking about my life as a whole.  I know that’s a dangerous and silly thing to do – but there I ws, pondering how some days are better than others.  Today I have had a hard time getting around even though the Enbrel is really helping a ton!  I broke out the old cane again yesterday and found that it made me less exhausted to just use it.   It’s hot and humid and got me thinking that I thought Florida (hot and humid) was good for bad bones – but it feels like it does when it’s about to rain.

“When these self-protective mechanisms break down for any reason, the result is leakage of enyzmes which damage the pancreas and any surrounding tissue they reach. This breakdown is called pancreatitis… Pancreatitis can be acute and only occur once in a lifetime or it can become chronic and keep returning over and over again. It can be a rapidly fatal illness or a mild attack of pain that resolves in a few hours or a day or so. It can cause tremendous side effects, including shock, blood clotting disorders, heart arrythmias, liver or kidney damage and death. Less commonly, pancreatitis strikes with a sudden severe fury that creates severe secondary problems, particularly with blood clotting and shock. In these cases, it can be fatal.”  –(although this description is for pets I foundit to be the best written piece of info about possible death for me).

From all of my research it does seem like this is a longterm disease with no imminent death issue present…meaning that the attacks will probably not kill you.  But you do need to remove high fat content from your diet and eat smaller portions to prevent the pancreas from being overactive.

Tonight at couple’s therapy Jax and I… [READ MORE and get the scoop on: "It’s so hard to express pain.  If you say it out loud then you seem like a complainer.  If you keep it to yourself than“… and also “I want to scream “WHEN WILL THIS END!!!????“…

….had a love fest.  We are getting along really well.  We’re both working hard, but he’s able to work longer hours than I am right now.  I wish I could take my body back 4 years before all of this got so out of control.  I haven’t been able to work long hours and as a result I’ve gotten very behind on things.  I have so much to accomplish before the end of tonight.  I really hope I can kick it into gear.

I’m still messed up from my pancreatic attack last Sunday (1 1/2 weeks ago).  It usually takes about 3 days to recover but then I have to be very careful what i eat for the next 2 weeks.  This time around – no matter what I eat I end up in pain.  I want to scream “WHEN WILL THIS END!!!????”  But the true answer is never.

On my trip last week, I stopped in to see my oldest friend in my life.  She has a new baby and live-in boyfriend.  It was great to see people making a new life for herself and I imagined her own parents excitement about their new life when she was first born.  (They still live in the same house so it isn’t that tough to imagine).  They own their house which is also great.

While I was pacing their house walking in circles with pain from my pancreas (it must have been the bacon grease in the pancakes – I’ve thought about long and hard and can’t think of anything else that could’ve hit me that hard)… and he said “I don’t think you’ll die from this at any point…I think you’ll die from something else.”  I know I should just blow it off – but I am so angry about this odd statement.  First, how in the world would he know what I’d die from?  Second, does he know I’ve almost been dead on at least 5 occasions because of pancreatitis?  Third, what “other” thing does he claim to think I’ll die from?  Fourth, thanks.. while they are building their new home (metaphorically), new awesome life, and not worried about money like I am… on a moment to moment basis now due to my medical bills… why would he dare suggesting that I would die from something else?  Mind you, I don’t want to die from pancreatitis… but I certainly don’t like anyone suggesting that it’s not that bad when I am freaking pacing their house worried that I have to go to the Emergency Room again.  Wow!!!!  i did not realize how mad I was about this.  I have really been upset by the glib remark.

I’m sure he’s a nice guy – but I haven’t been able to talk to my friend in person without him for years.  Well, I’ll rephrase that – the last time we really talked without him was 6 years ago when I very first got ill.  She was staying at my place waiting for him to pick her up while traveling through Los Angeles back to Texas.  I was super-ill and angry and freaking out – but she was in love and could not relate to my situation at all.  I nearly punched her in the face when she woke me up whispering to him on the phone 1 foot from my face at 5:45am for over 15 minutes.  I had just fallen asleep after being in pain all night.  What a drag!

It’s so hard to express pain.  If you say it out loud then you seem like a complainer.  If you keep it to yourself than no one knows you’re in pain and then they don’t even believe or understand the amount of pain you are in…. or they think it must not be that bad since you haven’t been bitching about it.  But what if i don’t want to complain about it?  I don’t want to have that type of outlook on life… I just want to get on with things and not dwell on it.  So what in the world is the middle ground?  Does anyone know?

Love, Sasha xoxo
PS -See reader comments next email!