Author Topic: Surgery Update... (or look who's right back on morphine)  (Read 37764 times)

Pooh

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #150 on: June 05, 2008, 09:52:02 PM »
Lauren it's so good to hear you are walking again.  And without a rollator,  WOOHOO!!!!! I pray all goes well for you from here on so you can lead a more normal life. 

Hug up that puppy and break in that mattress (both gently) and enjoy the peace and quiet for a while.  You sure deserve it afte the past couple of weeks. 

Take care dear, and come back when you feel absolutely up to it.  Don't push yourself.  We will be here waiting for you.

Hugs and God Bless,
Pooh

Katybarstool

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #151 on: June 06, 2008, 12:04:47 AM »
Lauren

I'm so pleased to hear your news. How about saving time - get the puppy to break in the bed. I can just imagine a boistrous young thing jumping all over it :)

Kathyx

Skylar

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #152 on: June 06, 2008, 12:52:21 PM »
Congratulations - there is nothing like being home in your own bed with your own puppy. Heaven.
Skylar

JannaLee

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #153 on: June 06, 2008, 08:51:17 PM »
So glad you are home and walking better than before!

I agree this whole experience has given you the benefit of the PT and OT!

You are an amazing young woman!

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #154 on: June 07, 2008, 10:50:06 PM »
This is going to sound horrible, but being home really makes me realize how much I took being away from my family for granted  :o

Between my sister complaining about how all I do is complain about being sick (I guess she means when I'm not asking about her life and trying to support her through whatever crisis she's having) and how I am completely miserable to spend time around because I'm constantly having a pity party (ouch!) which is why she didn't call me or come visit me the last few weeks of my hospital stay, my parents getting divorced, my mom trying to find a job and an apartment to move into, my dad being intensely melodramatic about our family "breaking apart" and how he's not going to be spending much time with me anymore since he won't be living with me and my mom (um... I'm 24!  If I weren't sick I wouldn't be living with either of my parents and plan to stop doing so as soon as possible).

What a welcome home!

Lauren + her family = STRESS2

Anyway... besides that I've been catching up on sleep and trying to stay sane.  And having quality puppy time  ;D

I can't wait for my Tuesday appointment with my urologist so I can hopefully stop lugging my catheter bag around the house with me!  The vertigo seems to be improving a bit.  I think my family is finally clear that I wasn't doing 3.5 hours of sustained cardio at the hospital or anything remotely like that.  Maybe if they were there a bit more they would have seen that my 3.5 hours of therapy was mostly practice grooming and dressing and short bits of walking and stairs and stretching and other exercises all broken up.  Hopefully my explanations have cleared things up a bit though.

Thanks everyone for all the kind words and support!  *hugs everyone*

-Lauren

Scottietottie

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #155 on: June 08, 2008, 07:14:47 AM »
Hi Lauren  :)

Cuddle that puppy!

I'm sorry you've walked back into all that stress. Somehow you sound as though you're getting things in perspective though. I hope the appointment with the urologist goes well. Keep us posted!

It's sounds as though you have worked soooo hard. It's great that it's got you walking again.

Take care - Scottie  :)

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LenV

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #156 on: June 08, 2008, 08:57:42 AM »
Lauren,
What wonderful news to log into this morning.  You are a brave girl.  I'm sorry for the family stress and I hope it gets better.  Love that puppy.  Puppy love heals a lot of things.
Billye

irish

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #157 on: June 08, 2008, 07:42:57 PM »
Lauren, Yeahhhhhh! What more can a person say. Sleep good and enjoy life! Irish ;D

Care

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #158 on: June 08, 2008, 08:53:39 PM »
Wordnerd,

Ahhhhhhhhh you are home!  Glad to hear you are out of the "slammer" as I call the hospital.  You will survive the divorce.  I understand the chaos it creates in a family.  Been there, done that.  When I divorced it was a very difficult time,  We were all hurt.  A divorce is not just between husband and wife, it is a family affair.  So much hurt.  But in time it does get better.  But while a family is going through it, everyone is hurt.  I know the parent side of divorce.  It is hard Lauren.  I was not really there for my kids as much as I should have been during the divorce.  But in the end, after years of healing, my kids and I are very close again just as we were as they grew up. They are the sunshine in my life.  We survived and it made us stronger. I divorced in the midst of being very ill.  I look back and wonder how I survived.

We are only here on this earth one time, I decided I was going to do my best to enjoy life to the fullest.   In time Lauren, the hurt will heal.  Try each day to find a positive in life.  Even if it is just looking out the window and seeing a bird fly, flowers in bloom, a clear blue sky.  You are a strong person Lauren, a survivor.  You will make it.

Hugs....
Care
« Last Edit: June 09, 2008, 08:06:12 AM by Care »

wordnerd

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And Finally... A Bladder Stimulator Update!!!
« Reply #159 on: June 15, 2008, 02:15:57 AM »
So I went to the urologist and he pulled out the catheter and hooked up the bladder stimulator with instructions to either go to the ER or get my home health nurse to come and catheterize me again if I can't pee for 10 hours.

But lo and behold... Ladies and Gentlemen of Sjogren's World...

We have SUCESS!!!!!!!!

And not only can I pee normally for the first time in forever, my motility problems seem improved as well!  Unfortunately my urologist is going to be out of the country next week and my mom and sister are going to my cousin's wedding in New York (which I'm very sad to be missing), so I'm still stuck with the hole in my back with a wire coming out.  But I will hopefully have the permanent one implanted soon!

In other news... As soon as I got home from the hospital, my dad came down with a cold and didn't tell anyone.  So I got a cold a few days later.  I'm on 3 immunosuppressants and I can tell.  Not to mention my IgA deficiency.  My dad is pretty much better and I'm still feeling pretty miserable.  I had a horrible migraine for most of the day today and my whole left cheek is very swollen for some reason to the point that it is getting in the way of my teeth and I keep biting it (which isn't helping things).  I'm pretty doped up on pain meds right now as a result and will probably have to go get it checked on Monday.

I had a very very long day on Thursday.  I was sick with this cold but I had two doctor appointments in the city that I had already scheduled months before because they book so far out.  The first was my Rheumy.  We discussed everything that had been going on including the whole hospitalization.  He agreed with me that my current cocktail of meds aren't working well enough.   I'm currently on 5mg of Prednisone every other day, 10mg of Methotrexate once a week, and 200mg of Plaquenil twice a day.  So he's going to have me taper off the Prednisone (thank god!) and the Methotrexate (but leave the Plaquenil for now), so we can switch me to something(s) else.  He also is planning on coordinating with my GP and my Autoimmune Pancreatitis specialist on this.  So now I'm starting the tapper over a two month period.  He also ordered a whole bunch of blood work and referred me to a gyno because we think that my hormones might be out of whack and contributing to some of my problems.

The Rheumy took 3 hours most of which was waiting, waiting, and more waiting.  I just barely got to my next appointment on time.

It was with my Autoimmune Pancreatitis specialist.  I had to wait 2.5 hours to see him.  He was very very apologetic, and I honestly wasn't too upset (just very tired) because when you see the top top doctors in their field they are always super super busy and overbooked.  It's just the price you have to pay to get the best, and that's also why I have a regular GI doc to help me deal with stuff in between.

Anyway he and I had a great discussion about my Autoimmune Pancreatitis.  He feels that the evidence is very very compelling that AI Pancreatitis is the correct diagnosis because of my elevated IGG4 and excellent response to courses of prednisone.  The problem is that I can't stay on prednisone and my AI Pancreatitis is chronic because unlike most people with with AI Pancreatitis (most of whom don't have other underlying AI diseases though) it keeps coming back with a vengeance when I stop taking the prednisone.  Most of his AI Pancreatitis patients have periods of remission for 5-10+ years after 2 months of prednisone.  But those people don't have Sjogren's and several other AI diseases.

So coincidentally he wants me to tapper off of prednisone and Methotrexate also so that we can do a new test for AI Pancreatitis that just came out a few months ago.  It's basically a biopsy of the cells in the entrance to the bile ducts to look for IGG4 infiltrates.  It's the next best thing to an actual Pancreas biopsy which is way way more risky.  He wants me off as many of the immunosuppressants as possible before the biopsy to minimize the chance of a false negative.  He wants to do the biopsy to confirm with certainty that I do have AI Pancreatitis because currently the only treatment for recurrent AI Pancreatitis is a medication called 6-MP which is apparently not a drug to be taken lightly.  I haven't done much research on it yet though.

If the biopsy comes up negative he said that he want to send me to the Mayo Clinic in either Chicago (which is his first choice) or Boston because he explained that he hasn't personally had any experience treating patients with recurrent AI Pancreatitis or with 6-MP and the Mayo Clinic is the best place in the country to go (the best place in the world to go is Japan where AI Pancreatitis is fairly common compared to the US).  Coincidentally my neurologist wants me to go to an Autonomic Disfunction center in Boston also, so I might go to Mayo in Boston to save money on the trip.

It's really nice to at least have a plan.  And I really really appreciate my doctor's candor about where his expertise ends.  He himself is a world renowned specialist in Pancreatic and Biliary diseases, but not Autoimmune ones in particular.  He is also an extremely kind man who feels bad that his status and demand for his services makes it impossible for him to provide the normal degree of follow up care for his patients and instead has to rely on other GI doctors to fill that gap.

Having a doctor who is straight with you is priceless really.

Anyway by the time I was done with that appointment it was nearly 7:30 pm, so my mom and I ate dinner at California Pizza Kitchen accross the street.  I was pleasently supprised to find they had a "new" pizza which was really my old favorite pizza that they had taken off the menu last year.  I'm pretty much never hungry anymore because of my pancreatitis, but it helps when I get to eat somethign really yummy!  ;D

Things have calmed down in my personal life at least.  My mom found us a two bedroom apartment we can afford.  I gave up on trying to get my sister to see why I was so hurt she wasn't there for me in the hospital and have been just trying to enjoy our time together now anyway.  Maybe someday she'll apologize, but I'm not the type to hold a grudge and she's not in a place to want to understand where I'm coming from anyway.

As far as friends go... last night I had a dream that I was sitting in a movie theater waiting for a movie to start next to my former best friend's brother.  I've been a little worried about the apartment my mom and I are moving to because my former best friend lives in the same complex with her brother, so I guess this was what this dream was about.  Her brother and I were making small talk in my dream and I finally go up the courage to ask about my former best friend.  He explained how she actually wasn't living there anymore because she had met this guy and went off to another state to live with him and was having all sorts of problems and he was really worried about her.  So that was my dream.

But today for the first time I'm kinda feeling like screw everybody who has fallen by the wayside.  Who hasn't been there for me.  For the first time I'm not feeling like I did anything wrong.  I'm not feeling like I want to get a hold of those people and make them understand.  Screw them.  I don't want them or need them anymore.  I'm ready to concentrate my energy on finding friends who will be there for me like I am always there for them.  And if I'm alone for a while because I'm trying to recover from a horrible year of being in and out of the hospital so be it.

I feel like I've just put down a whole lot of baggage that was weighing me down and walked away.

So I've been writing more again.  I got a few chapters done on one of my three novels I'm writing while I spent all that time waiting around the doctor's offices on Thursday.  And now I've written a ridiculously long post.  I think I might post the part about the Pancreatitis in the Digestion and Internal Organs section also in case anyone would find it useful.

Scottie, Billy, Irish, Care and EVERYONE... thank you thank you thank you from the bottom of my heart for all of the love and prayers and support you've given me through all of this.  I love you guys!

*hugs*

-Lauren

Skylar

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #160 on: June 15, 2008, 07:25:48 AM »
Wordnerd, it's wonderful reading that you are doing so much better after all you've been through - especially the update that the bladder stimulater is working.  ::)

skylar

Katybarstool

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #161 on: June 15, 2008, 10:26:02 AM »
Lauren

You have emust have been absolutley xhausted after so long at your doctor appointments. I'm delighted that you can finally have a pee. Well done you.

Kathyx

Scottietottie

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #162 on: June 15, 2008, 11:52:55 AM »
Hi Lauren  :)

It's working! YAY! Now to get the hole in your back fixed! It must be a real relief not to taking 15 minutes to pee. With the awful time you had in the hospital it would have been terrible if it hadn't worked too.
Hopefully iy will all be worth it.

I can't imagine a day of two doctors and taking that much time. I'm not surprised you were exhausted. They do sound like they have a plan though - and that they are keeping you up to speed with it (always important!) and I hope it all has a more positive outcome.

I'm glad you feel you've dumped your baggage. I'm certainly glad that you're not blaming yourself - because you never should have been. Nothing that's happened has been your fault. Being ill just isn't a 'blame' thing!

I'm glad you've got back to your eriting because I know you have a real way with words and also a lot more up and down emotional experience than many people your age have and that will make your characters interesting.

Keep posting!

Take care - Scottie  :)
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eyeamdry

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #163 on: June 15, 2008, 11:54:25 AM »
Lauren-I have been reading your travels in this thread and everyone has said just about all the right things!  We have a super group here for listening to us.  You are a very mature young lady and this is shown by your ability to weather all life has thrown at you.  I'm sorry about the mother/father/sister problems, but I secretly suspect we all have some of that in our family.  I'm jealous of your puppy.  (((((((((hugs))))))))) Lucy

P.S. I am glad you were able to pee, too.  :-)

lynnmarie219

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #164 on: June 15, 2008, 06:02:29 PM »
YEAHHHHHHHHH!!!!!!! 


I'm so glad that your bladder stimulator worked!!! I'm also glad that your home and things are slowly falling into place for you! It will all work out Lauren....I know it will! You are strong...you can do it!