Quilt pics :)

On January 20th, someone from my dear church family (I have yet to meet her, too!) blessed me with the most beautiful, handmade quilt in my favorite colors!!  Words cannot express the joy this gift gave me!  My sweet brothers and sisters-in-Christ have been so supportive and encouraging.  It's definitely these things in life that keep me going!  Many have asked to see the quilt, so I had my brother take some pics. :)

this quilt is huge.

flowers and leaves were stitched all over!  isn't that amazing?

Update:
On Wednesday, I have my bilateral lumbar sympathetic blocks.  Your prayers would be appreciated! :)  The post-op pain in the low back can get pretty bad.  But I am looking forward to pain relief in my feet!

My right shoulder is doing poorly.  I have an abnormal scapulothoracic rhythm (?) with a shoulder impingement from the instability.  Everything's still being worked on in physical therapy, but it sometimes seems like my joints are just getting looser!

P.S. I hope you like my new blogspot background! =)

Upcoming events!

On Wednesday the 30th, my pain dr. will be performing a bilateral lumbar sympathetic block on me. :)  This will be the first time in his career he's ever done one for both feet, so it will be two procedures back to back.  He'll block the sympathetic nerves on the left side of my spine, then on the right.  I haven't had an LSB since April of 2011...since having the flu, though, my feet and hands aren't doing well, so he wants to do a block with ketamine and clonidine to calm down the CRPS pain in my feet.

Guess what?  

Lord willing, I'll be heading to Cincinnati, Ohio soon!!  Maybe even as early as next month! ;)  This past Friday, I talked a lot with my pain dr. about what EDS clinic to go to, and he highly praises Cincinnati Children's Hospital which is one of the top three children's hospitals in the nation.  My neurologist thinks it's now best for me to go out of state and see an EDS specialists since Ehlers-Danlos Syndrome is so rare.  She's been reading papers and papers about the neurological manifestations of EDS which could very well be what's causing my leg weakness, headaches, and eyelid droop.  If/when I head to Cincy, my pain dr. wants me to also go to CCHMC's pain clinic.  And, I hope I can also get help for POTS.  So I have no idea yet how long I'll be there!

But this will without a doubt be a great and exciting adventure! :o)  And I look forward to finally getting an answer for all these symptoms!

Recovering

Yesterday afternoon, I got discharged from the ER. :)  My breathing and heart rate is much better than before, and my fever's still gone which I'm very thankful for.  They put me on a 10-day course of Tamiflu, an anti-viral med.

Any kind of illness can exacerbate the CRPS, and to my great dismay, the flu did just that. :(  My hands and feet are now swollen and oh so painful.  I now walk twice as slow, and I never could walk fast in the first place cuz of my weak leg.  Praying I can get squeezed in to see my pain dr. this week..

Until next time!

P.S.  Please stay well, everyone!  I learned in the hospital that the flu shot only protects one from Influenza A, not B (which is what I have).

The flu

Thank you everyone for your love and support!  I can tell you are praying cuz my fever broke last night. :)  The ambulance ended up taking me to OHSU yesterday cuz my heart rate was so high from my condition POTS, I was dizzy, and my fever was 103 even with Aleve.  They gave me lots of fever medication and an anti-viral called Tamiflu.  Oh yes, I tested positive for Influenza B.  Not fun at all.  The doctors and nurses said I'm one of their sicker patients..  I had 2 EKGs, 4 chest x-rays, and lots of blood work. They wanted to check my lactic acid levels, heart enzymes (since they said I was having sinus tachycardia), and inflammation in my body.  My oxygen sats keep dropping even tho they are giving me oxygen through a tube.  My sats dropped to 77 one time (it should stay at 100) and the alarm went off...that was a little scary.  I'm currently in the observation unit in the ER.  Everytime I stay here, The Bourne Identity is always on TV...now whenever I watch it, it brings back bad memories. ;)  Waiting for the doctors right now...  If they want me to still stay at the hospital, then I'll be admitted to a "real" room.  I'll keep ya updated!

Prayer requests

Well, this has been fun...just kidding.  This past Sunday, my mom came down with a fever and body aches, and she still has a low-grade one even today.  I had 6 appointments this past week (none of which my mom was able to go to, so my sweet older brother and sister took me to all of them), and let me tell you, I never want to schedule 6 in one week again.  Wednesday's was from 8-12 pm, and yesterday's was at 5:30-6-30 in the evening!  I'm so exhausted.  My little brother came down with a cold, too.  *sigh*

So this morning, I came down with a sore throat, a cold, and a fever of 101.3.  In addition to all that, I'm dealing with nystagmus again, and last night in bed, my heart rate was over 120 from the POTS, and I couldn't lower it at all.  My headache's so bad, and my feet hurt from the CRPS.  My sis, too, came down this morning with a high fever of 102.2! x[  *groan*

I'd just appreciate your prayers that we will all be able to get over this soon.  This has been a stressful week, and this coming Tuesday, I have an appointment with one of my doctors and I really don't want to cancel it.

Tests and more tests..

First blog post of the new year! :)  Here's just a little update:

Tomorrow I have my somatosensory and auditory evoked potential EEGs from 8 am-12 pm.  Let's just say I'm not really looking forward to leaving the house at 6:50 in the morning and spending 4 hours with electrodes on my scalp and extremities.  It should be quite an experience!  Hopefully this may give us some answers. :)

I've been so exhausted from dealing with POTS and not sleeping well at all cuz my feet are going through a painful CRPS flare.  I've been getting shiny skin and red blister-like spots on my toes which aren't good CRPS signs at all.  Waiting to hear from my pain dr. about all this..

Thursday my neurologist will be doing an electromyogram study on my left leg, and on Friday, I have my lumbosacral plexus MRI.

Thank you so much for your prayers!