Yes, I said that.  But I can’t take full credit after Allie said I looked like a peep on Easter.  But if it were between the Queen and I and our “peepness,” the Queen would have taken the cake for sure. 

So as I have already mentioned, we had a royal wedding sleepover, full of English Tea, Bangers, English Muffins, Strawberry Jam, and big, beautiful HATS!  The hats in themselves warrant their own blog post.  When it was decided that this sleepover was going to happen, my Aunt Laurie and Aunt Mada went to work on designing our royal masterpieces.  As you will see, each hat is a one of a kind.

I realize my posts lately have been a lot of copying, pasting, and redirecting you all to other sites.  As I am trying to spread awareness for Ehlers Danlos Awareness month, I have also been battling an intense amount of fatigue, tachycardia, headaches, brain fog, neck pain, and have therefore, been honestly having some pretty emotional and frustrating days.  Thus, my posts have been pretty short recently. 

…BUT what’s my mantra?  “This too shall pass!”

I have wanted to post about my weekend since Sunday, but I knew it would be best if I waited for my body to start behaving better, so I could actually write coherently. 

1.  Medical Stuff: 

• 1 day of PT: More circuit work, more pelvic clocks, and I graduated to the full foam roller for back stabilization marches!  Woot! Woot!
• 2 days of home rehab.
• I had my tri-weekly Dr. Rosen appointment.  The quote of our session (which should be the quote for my life) was, “All you need to worry about is making today right.” ~Dr. L. Rosen.  I also followed Larry’s instructions and showed Dr. Rosen my Apollo 13 poster.  He gave me another A+, and thought it was a genius exercise for me to do.  Gotta love the team approach when it comes to my docs. 
• It’s been a week of increasing my Propranalol.  I haven’t felt a huge difference, but hopefully when I add Midodrine to the mix next week, I will feel better. 

• 1 Day of PT~I did a new circuit that had me rotating through light treadmill work, light elliptical work, Body Gym squats, and toe raises…I also did arm and back strengthening, balance exercises and my PELVIC CLOCKS!
• 1 Day of home Rehab.
• I had prolo round 4 on Monday on my neck, upper back, mid back, and ribs.  I go back May 31st for round 5.
• On Wednesday I went to Toledo to see Dr. Grubb’s NP, Beverly, for POTS.  I am still working on this (long) blog post, but I will say that my appointment did not disappoint.  I left with a much better understanding of why my body is doing what it is doing, and hopefully ways to help better manage my POTS. 
• I filled a prescription for Midodrine for POTS.  I don’t start it for 2 more weeks though.
• My open toe compression stockings just came in the mail!  As soon as I try them on, I will grace you all with a picture. I better make sure my toes are pretty first!

After a big week last week of Bob Seger and Philly, I knew I had to lay pretty low this week…Sunday and Monday I was a mess, but by Tuesday I was feeling a lot more human.  Hopefully these five won’t bore you to tears…Especially since I have only a couple of pictures.  Everything on my computer was wiped out yesterday.  I still don’t know why.  Sighhhhhhhhhhhhhhh…

1.  Medical Stuff: 

• 2 days of PT.  Circuit work and elliptical work.  I tried to do the recumbent bike yesterday but I was “taching” too much (heart rate too high) so I had to stop.  At least I got in a good amount of strengthening before the POTS attack hit.
• 2 days of home rehab.
• I had my monthly appointment with Larry.  I turned in my Apollo 13 assignment, we talked about where I am at with my goals/progress, what to discuss with Dr. Cantieri on Monday and Dr. Grubb’s NP on Wednesday, and we figured out a plan for my continuing physical therapy.
• After going over my sources of pain, we realized that EDS is affecting my jaw.  It keeps popping and subluxing, giving me some of my neck and jaw pain.  I am to wear my mouth guard more, and watch it.  If it gets too bad, I can be referred to a doctor who only works on TMJ problems.  I have also heard you can have prolotherapy on your jaw.  Hmmm… 
• Larry wrote me a prescription for a new pain med cream I had to have made at the compound pharmacy to help with spasms; especially in my neck (since I HATE taking muscle relaxers).  He also wrote me a prescription for open toe compression stockings!
• The good news about open toe stockings?  They are open toe.  The bad news about open toe stockings?  They only come in opaque, not sheer like my other ones.  I guess beggars can’t be choosers, right?  I am still waiting for them to come in the mail.