Morning!

RecoveringActor

Morning, ladies!!

Who's up, who's off?? Any checks, WR or NWR??

Ms.BriarRose

You are awesome, RA.

I do have some news medically.  It's long, but I wanted to include and cover everything in one post, so sorry right off the bat for the length.

I went to my regular pain doctor in DE about a week ago.  I have been flaring horribly (flaring is when my pain levels spike and go out of control), and nothing- not meds, Lumbar Sympathetic Nerve Blocks, and not even my stim- are touching the pain...it's been an excruciating winter).  I had a LSNB done 3 days before Christmas, and while it gave me enough relief to get through Christmas, it didn't last long and I was back to where I was. 
Long story short, she told me that there is not much more she can do for me- I have had over 20 LSNB (which are not fun at all), and besides meds and the blocks, she can't do anything else.  She said that it sounds like, in her medical opinion, that because I react so violently to the cold that unfortunately my stim won't work during the winter.  She said it could work great during Spring/Summer/Fall, but the minute it gets cold, I flare so bad it just won't help. 
She also said that because the LSNBs do help some for a short period of time, she thinks I need a longer procedure that will bathe the nerve in the medication longer.  So she referred me to the pain doctor at Lankenau Hospital (who did my spinal cord stimulator surgery) for more treatment.

So I saw him last Thursday.  He agreed with her about the stim working for the three seasons, and me reacting so horribly to cold that it just won't work.  He offered three treatment options:  First, an intrathecal/PCA pump (http://en.wikipedia.org/wiki/Intrathecal_pump).  Second, a sympathectomy (http://en.wikipedia.org/wiki/Sympathectomy).  Finally, a Spinal/Epidural Infusion.

I told him that I wasn't at the point of a PCA pump yet, especially since I haven't had the stim even a year and it did work when it was warm (my mom is a home infusion nurse and one of 2 nurses in the entire state of DE that refills PCA pumps, so I know what they are all about).  I told him I was nowhere NEAR having a sympathectomy done, because quite frankly, the likelihood that it would end up putting me in more pain from cutting the nerve is too high for me- that is a last ditch, years down the road treatment.  So, that left us with the epidural infusion.

Basically, a spinal infusion is where they admit me for 4-5 days for treatment.  They put an epidural in, and start pumping the med (bupivicaine; the same med they use in the nerve blocks) into the epidural, which is placed over the sympathetic nerve (so it's similar to what you get when you give birth, just placed a bit differently).  They have to constantly monitor me with the medication, and more than likely I would have some PT at the same time that the block is going on.

The doctor wanted to try some conservative methods first, but did say that he thinks more than likely I will end up doing the infusion.  He adjusted my meds a bit, as well as ordered a reprogramming of the stim.  I go back for the reprogramming of the stim a week from Thursday, and if that doesn't do anything about two weeks after (3-4 weeks from now), he will admit me for the infusion.  He said if the infusion works, we will wait til next winter to see if the stim works, and then decide if I need one basically every winter.  If it doesn't work, we will still wait to see how well the stim works over the spring/summer/fall, and then decide if I need to go the PCA pump route.

It's really tough to be going through all of this.  It's affected every single aspect of my life.  Cold is my biggest trigger; I get violently ill from the pain (spending nights in the bathroom/by a trashcan ill), but I didn't think that the stim would end up not helping.  It's been a huge letdown.  DH has to do everything, and I feel so guilty about it.  They keep upping my meds, to no avail.  Driving is really difficult for me, which means I am stuck at home.  We are starting the process for SSD, but more than likely we will be denied- everyone with my disease is denied the first time around.  We are trying to start the house buying process, and I know that the pain will interfere with that.  I have put a ton of water weight back on (both doctors said it was water weight).  It's just one thing after another.  I don't want to complain- please don't take it as that.  This is a vent at this point; I am just tired of the ish.

The other thing that is frustrating is I have to wait a whole nother year before I can see the top specialist, who is at Drexel (Dr. Robert Schwartzmann, the world's leading specialist in my disease).  But what really ticks me off is that I know others who had appointments after me who got bumped up to see him before me.  Umm, they told us when we booked the appointment a year and a half ago (yes, that's right, I booked in it 2009!) that patients are bumped in order if someone drops an appointment or dies (yes, she said dies).  So why are others being bumped before me?!  It's really frustrating.

Anyway, if I could just have thoughts and prayers right now, as well as for Brian, I would really, really be so thankful for them.  My sister told me that God will give you more than you can handle, but will never give you more than He can handle, so I am really trying to rely on my faith, but boy it's being tested right now. 

Thanks for reading all of this, girls.  It really means a ton.

For those who don't know, here is what I have: http://en.wikipedia.org/wiki/Reflex_sympathetic_dystrophy

What a Spinal Cord Stim is, which I had put in July 2010: http://en.wikipedia.org/wiki/Spinal_cord_stimulator

More info on a LSNB: http://www.spineuniverse.com/treatments/pain-management/sympathetic-nerve-block-information

paprika28

T&P for less pain, mbr. I made a mock up of our centerpieces this weekend; I think they're pretty cool, but I feel like I might need to see them in the actual venue. I'll post pictures when I get home. Other than that, I did a whole lot of nothing. Oh, but we are having dd baptized on feb 6th:)

RecoveringActor

{{hugs}} MBR.. and T&P.  I couldn't imagine living with something like that every day.

As for me... I got nothin' going on.  I still have to call the flower place that's doing the centerpieces at the rehearsal.  I have to call my cake person to start to work out details... and I have to call our priest to set up another meeting with him.  Not to mention I have to have my Baptismal records sent from PA.

Not so much a check... more of an AW... I cantored mass yesterday morning, and it went really well!  At my last pre-Cana meeting, our priest gave me a hard time about not singing at church, and I said "But Father, I AM a cantor.  You're just never presiding Mass when I'm singing!" and he was presiding this week, so he heard me sing. 

Oh, I do have a bit of a check!  I finally worked out all the details on my invites!!! My person is having a mock up sent to me next week.  It's in PDF format though, or else I'd blur out all the personal info and post.  Maybe I'll scan it when I get the proof in the mail.  I'm really excited though.  The proof looks adorable.

JayElleJayCee

I'm so sorry MBR. What a mess. Don't get too discouraged. While you may be upset that the STIM isn't working during winter.. it is helping you for the rest of the year. Keep your faith.. that's all you can do. Don't lose hope. It sounds like you do have some options left so that's a good thing. I would sooo call that hospital and say something about moving your appt. up!!

paprika - can't wait to see the pics. it still amazes me of your diy talents! haha

ra - since i am not catholic, i have no clue what you were going through... i must say - i don't envy everything that has to be done before marriage. lol. can't wait to see the invites!! and get those calls made!!!! just knock them out all at once.. you will feel so much better!

me.... ummm nothing...

RecoveringActor

I think the office at Church might be closed today because of MLK... because no one is answering.  I said my priest an email, but no response yet.  I should call the flower place though.  Darn you and your voice of reason, JLJC!!! 

Srsly about being Catholic though.  There are so many hoops you have to jump through to get married in the church.  It's a hot mess.

RecoveringActor

I think the office at Church might be closed today because of MLK... because no one is answering.  I said my priest an email, but no response yet.  I should call the flower place though.  Darn you and your voice of reason, JLJC!!! 

Srsly about being Catholic though.  There are so many hoops you have to jump through to get married in the church.  It's a hot mess.

EiDuffy

i'm trying to organize all my stuff right now and still trying to find BMs dresses...
hope you feel better MBR.