Quick Update

So one of the muscle relaxers I was taking made me have the pass-out spells in Lupe's. Stopped that.

Started new meds. Don't really like the new stuff. The hip is back to "August Pain" as I call it.

Went to see the rheum. She said the catscan showed the same thing as the MRI. Let me break that down.
MRI Results- "submarrow edema please consult with ct scan"
CTScan Results- "Submarrow edema please consult with MRI findings"
Yep, you read that right. So all of my films, impressions, etc are now in the hands of a, get this, "team of radiologists". They are going to caucus about it and get back with me in a few weeks. Hilarious. I'm not being sarcastic, I really think that is funny. At this point, you have to.

As of Jan. 28th, 2011 I have not been able to walk for 6 months. The pain in the hip feels like it's going to break. And I've had every doctor I've seen- over 20 confirm this is real, no psychosematic business happening.

So the radiologists' summit is one of the ways we're hoping to have a diagnosis.
Number 2, I go see a pain mgmt doc. I'm still leary of this and it will be a new guy, blah, blah, blah.
Number 3, I get my genetics testing done this Friday- BUT WAIT DIDN'T YOU ALREADY GET THAT DONE? Yes. I did at Mayo Clinic in MN. However, they didn't test me for Ehler's Danlos Syndrome. I do have a connective tissue disorder the rheum says, but which one. And has it been named, or better yet, discovered?

Something about my body being "deconditioned" has come up and I have to go have more physical therapy. But I need to have a diagnosis before I can do that? Not really, I can just go PT Lite.

That's what's happening here. Along with all the other life stuff thrown in there, which makes this hop-along stuff bearable.

I feel the prayers every day, all day. Thank you for those. It's pretty cool. Not the hitch in my giddy up, but the prayers-feeling.

My Voyage to the "R.E."

I have the saddest story to tell you Ms. Mary! (sweet friend and caregiver) This weekend we went to the restaurant and my mom got really sick and she had to be ambulanced to the R.E.!!!

- Leelah, talkin' about this past Sunday.

Yes. I got crazy "my undergarment is now a vice around my back and chest" pains at Lupe's Tortilla. Yes, I had to be ambulanced out of there and taken to the E.R. (R.E. is Leelah's way). No, I had not eaten anything yet- not even ordered!!! Yes, the staff at Lupe's Tortilla on Hwy 6 were champs and helped saved the day. No, I didn't have a heart attack. Yes, I still don't know what the heck happened to my body that day.

It was weird. Weird, slightly embarrassing, and totally dramatic. Since we know I have a connective tissue disorder and we still don't have a name for it (if we ever will is up to the Lord!), we had to be cautious and not pass go on our way to the hospital. Oh and I started to black out at the restaurant. I kept slumping over and my face wouldn't stop twitching. Those poor just wantin' a little family lunch patrons that had to watch me literally spazz out all over the place while pretending to not be watching and also pretend to be concerned and eat salsa all at once. Geesh. They probably thought they were in the taping of ABC's "What would you do?" show. Only one person came up and said something, "You should call the paramedics!" Thanks kind sir. I appreciated that.

We got to check out the new Methodist Hospital in Katy though. Gotta love that new hospital smell! Which is consequently the exact fragrance I put in my car, "New hospital" smell! They were great. I got EKG'ed, blood drawn, and chest x-rayed. All results said nothing. I got an anti-inflammatory shot and the ER doc said something about my muscles in my chest were spasming and that caused the severe pain. Hmm... Kind of like my CRAZY RT HIP PAIN YOU MEAN!?!?! I don't know.

Of course my rheum doc has been gone all week. And they ask, "Well have you called your Primary care doc?" I DON'T HAVE ONE OF THOSE! I'M TOO RARE FOR PRIMARY CARE! I really did say that, but not in a yell-tone.

So I got a catscan yesterday of the hip. Or as I call it, "the last of the scans". I surprisingly enough have not had this done yet. Dr. Bhanusali (rheum) thought I should so I did. Don't have results yet. And my leg that was improving, is back to pain town. Which is a bummer, but hey, it's just what's up at the moment. Physically at my worst, mentally at my best all by the grace of God.

Next week, I go scare another, fresh, new primary doc. The plus is that this guy will be a Baylo Clinic doc. I've eeked my way into their system now. They probably throw darts at my chart during lunch and breaks. My medicine is whack. I mean, it's livable, but it's a lot to manage. It could be worse.

So that's the haps! So thankful for the friends who helped us out. It's a wonder they still answer phone calls from the Nichols!!! I give all my friends a red phone for when I call...

A 30-emotions-filled birthday!

Dudes, this is long but please stick with it. I pray this story blesses you.

Kind of weirded out by the fact that I've filled out the number '30' for age on a couple of forms. Yeah, they were medical related forms for new patient visits- shut up! It's not the whole idea of 30 and being older- it's not! I'm thankful to be alive most days, for real. It's just weird writing a new number. I'm so used to the 2-something writing. It's as simple as that.
Really. I'm cool with it.
Turning 30 was fun. I mean, I'm already using x amount of creams for all sorts of remedies: firming, de-firming, wrinkles, smell goods, etc. so why not just own being 30. I'M 30 AND I'M OWNIN' THIS THANG! Really, all you 29'ers suck it up. Sorry to be brash, but come on. There is a LOT worse things out there then a silly age. We are going to have a "I'm 1,000 years old today" moment in Heaven. This is nothin'.

The Lord gave me the best presents on my birthday. When I woke up I'm not gonna lie I was a little sad on the day of due to the fact I wouldn't be hearing from not one blood family member on my day. I straight up miss my earthly daddy who's been gone now for almost 3 years. I didn't tell anyone, just Jesus. He told me, "I got you." I believed Him and went on my merry way to church. There was some hint of surprise lurking in the air. I got a big ol' surprise as I crutched into La Vida Loca at 4:30 I came into the party room and there was all my family (my in-loves) and my family in Christ -girlfriends- holding up their menus over there faces and then "SURPRISE!!!!"


John didn't get my friends' pics. He had a lot going on. I promise they were there! I didn't make them up!
Thank you John for arranging this. You explode my heart with your coolness.

Then it gets better. See, as I have lamented on here before I found almost all of my pictures thrown in our trash cans one day. Here I was holding on to these pictures of me as a baby- can you imagine? - all wrinkled and thrown away. All my memories. I was devestated and cried out to the Lord in my garage. He immediately spoke to my heart with His spirit- "I'm your Daddy. I'm your Mommy. I got all your pictures with me and I see them everyday. I love you!" I gathered the pictures and put them in our closet. If you know me, I'm an archiver. I have a photo scrapbook for Leelah as well as a journal where I write all of her funnyisms, accomplishments, firsts, etc. It's a big deal to me.
You must know, I have grace for the person that threw my memories away. I've forgiven and will keep on forgiving them with Jesus' (and a little counseling) help. I can't understand why someone who holds such a precious position in my life would do that, but that is no excuse for me holding a grudge. I know God loves me which gives me the love to forgive. Please know, I'm sorry you were so hurt by life that you did that.

In our precious small group - Cookbook Book Club- I shared this whole situation with my girls as part of our study of Captivating. One girl in particular had a tug on her heart about my memories not being kept here on earth. The Lord put it on my special friend's heart to collect all of my pictures (just about) from birth to my child's birth- my whole life! 30 years! This was mission, which took several months, not only involved her but her kind husband, my hubby, and several friends. Together they compiled them all and made me my very own scrapbook complete with letters from all my friends. Thank you Lesly for compiling the letters and for taking pictures of my church family! This present was saved for the last. I have to tell you, when I opened it I had NO idea. When I saw it was my face on the front cover and opened it to find my daddy's pics and then my birth pics, all through school, college, wedding, etc. I cried 30,000 tears for 30 minutes tears of shock that God knew just the present to get me. I cried that such a sweetheart answered the call to do this, tears of just utter amazement. It's certain that some of the guests were a little afraid of all the emotions. It was intensely perfect. Jesus came to my party y'all!


Oh and there's more, because that's how He works.
This sweet friend, Becky- I love you!- knew about another need I had expressed. You see you have pictures of yourself and all your glory moments plastered in your parents' hallways. I didn't. This was hard! Well, sweet Becky picked out some of my special moments and had them in a beautiful frame which is when my mom-in-love got up and accepted it. "This is going in our home, Gillie. We love you so much!"
Blown away. At this point, I had every membrane that produced tears, saliva and mucus working on overtime. BAAHAHAHAHWWAAAAHHHHH... It was beautiful. Not my crazy, sweaty over-emotional face, but Jesus' gifts from my friends and family.

Yeah. I'm very blessed and cannot thank God enough for it. Thank you to everyone who was a part of that moment and a part of the new moments in my life. I love you guys.
Whoa.
Then my sweet Mindee-friendy, had made get this- 5 of my favorite pie/cake ever: Banoffee- bannaffee? Whatever, that stuff is goooooood.
That was the birthday when I've never felt so loved.

OOOOoooooh weeeee

WHAT UP WITH ME?
Yesterday the Johnster and I rolled it on up to the Baylor Clinic. We noticed so many similarities to Mayo Clinic in regards to the decor, the e-chart, the doctors wearing all fancy clothes, etc. I would like to change it to "Baylo Clinic". Now, I have quite the file at Baylo Clinic, thanks to my whacked out zonules in my eyeballs. So I have an "in" there. Why I haven't just been seeing all the doctors in that system, I'll never know. But I have now seen basically the entire Baylor Eye Clinic, the Parkinsons Disease and Movement Disorders Clinic and now, Rheumatology! The Rheumatology clinic is my new favorite place to be in the medical center in Houston. Dr. Bhanusali gets 2 lax finger joints waaaay back (= good rating) from me!!! LOVE her.
She's super smart and informal- a GREAT combo!
Here's how it went down:
Me: "I'm a mom of a 4 year old who basically can't walk and do what I need to do for over half a year. I've been having pain since Oct. 2009!! I can't eat cheese anymore! I've had 9 eye surgeries!!!!! WAAAAAHHHHH!"
Dr. B: "That just sucks."---NO KIDDING SHE SAID THAT VERBATIM!!!
I liked her immediately.
She has several theories. She is the first doc to actually have valid theories- meaning I've ended up in the right place which she verbally confirmed by saying, "Rheumatologists deal with the weird diseases. And you are even weird for us. BUt we cannot leave you like this!"
Theory of the first:
1). My hip wants to dislocate due to the connective tissue disease (still not named) but can't, so it just gets crazy inflamed- yowza pain!- thus causing muscle spasms, ergo affecting nerves in surrounding areas. The hip dislocated back in '94 during drill team tryouts when I did the splits and then I got up and kicked my own face. One of my favorite stories to share.
2). I might still have Ehlers Danlos - a type of connective tissue disease that has many types. I have to go get a different gene tested in HOUSTON to figure it out. This will probably take months, but she still wants this done. This disease affects the joints and whatnot. She isn't happy with my connective tissue disorder being: "not otherwise specified"
3). I might have a form of Lupus due to my ANA bloodwork being positive. This doesn't mean I have the systemic Lupus you hear about, no but more of the weirder forms (duh) that mess up connective tissue. She ran more bloodwork yesterday to get that looked at.
4). I get a catscan of the hip next week - Wed. Just throwing that in, not really theorizing there.
5). I'm actually a real "weirdo" a la Gonzo in the Muppets.

Needless to say, Dr. B is on the case!!! I'm so thankful that I was referred to her by Dr. Shahed (neuro genius). Oh and I got a whole new medicine regimen to in the meantime treat the symptoms which by the way, is all you can do with any of those above theories. Manage it. Who cares! I'll take managing over living in pain all day any day, right!? I was overjoyed with how well the appt went yesterday. Plus, I got a Reeses buttercup, could you ask for more? Well, you could, but lunch was too far off.

So I go back to Dr. B in 3 weeks after the medicine regimen has been in action. I have a feeling with the right mix of anti-inflam and muscle relaxers I could be a pain-free walker here real soon!!! Praise the Lord from whom all blessings flow!

"Rheumor" has it...

CRAZY MEDICAL SAGA UPDATE:
Today was my much anticipated visit to see the neuro at the Parkinsons Disease & Movement Disorders Clinic at Baylor, phew! It went well. Dr. Shahed was obviously brilliant with the bonus of a sweet bedside manner (thanks Jon- she was really just as you described!) and I felt as if I were being seen by the best in that niche of neurology. She said that while I definitely had neurological symptoms- tingling, slight nerve damage, brisk reflexes, that those were symptoms not the source. Meaning something non-neurological is causing neuro things. Which is good news that it is not neurological! She also gave me new muscle relaxers which shouldn't affect my vision so badly like the one I'm taking which has caused so much improvement, but messes with my CNS (central nervous system). So this should help further relieve the spasms.
She recommended I go see a rheumatologist and was SHOCKED that I hadn't seen one already b/c they treat weirdos- I mean- people with connective tissue disorders and especially hard to diagnose stuff. She gave me a referral to Baylor College of Medicine's rheumatology dept. What is a rheumatologist?
I called and the soonest they could get me in was Feb. 28th- to which I cried. I've heard it can take as long as 4 months to get into one so that is actually not bad, but it is bad because that will have been 7 months of not walking!!!
Fast forward to this afternoon, I got a call from the nurse who said they could work me in for this Monday morning! Whoop!!! Thank you Lord Jesus! Big deal.
So, thank you for your prayers! This is hopefully going to be the last stop on the medical crazy train for us. God willing.
Many blessings came out of today. Great news that my brain/spinal cord is not at the cause of this. Now on to what is!

Our 2000top10

2010.
Would I do it again?
Why don't I peruse,
what was for us, news:

1. It was the year of the eyes for me. 4 surgeries to correct my lens dislocation in the left and just one in the right! I'm proud to say that the Lord's done an amazing work on my sight! So glad I can see, all that HE has done for me.
That concludes my rhyming schemes.

2. John got the chance to be lead package engineer for his project! John, do you mind if I brag + blog = "brog" on you?

3. Leelah got to sing in front of the church with her WAM Jr. choir. This was a much treasured moment we won't soon forget.

4. MAYO CLINIC!!! We came. We saw. We got blood drawn. Not John, just me. And after 30 years of not knowing why my eyes were, um special?, I now can say I have some "Darned if I know disease!" (thanks Dr. Hamill!) that affects my connective tissues! No, I didn't get that on a t-shirt. I'm considering it, "I went to Mayo and cried and almost got snowed in and all I got was a connective tissue disease diagnosis and this tshirt!" We did make a pretty flippin' sweet little doctormentary though...

5. The Titus Project- our church's mentor program became a reality!! I am so very thankful for our precious mentor and for our sweet group. God knew what He was doing and it worked out so well!

6. We tried some crepes for the first time ever. We didn't like them.

7. We totally did it up Cajun style at New Orleans with some of our most favorite people, The Vinings! One day post eye surgery I might add. Which for me is like saying, one day after shopping at HEB. It's a frequent occurence is what I'm sayin!

8. We got to go to the North Pole via the Polar Express with the fam. It was magical to hear Leelah ask, "Why isn't there snow here!?"

9. We got to meet a lot of new little blessings born to this world! I would list them all, but for fear of omitting one I'll just say, "We love you Baby Class of 2010!"

10. We've learned new lessons in compassion and patience from my not being able to walk for almost 6 mos. The lessons learned through these trials are what life is all about! I'm thankful for them and I'm thankful for our many friends that have been there for us- you know who you are and to us you are the light of Jesus!

HAPPY NEW YEAR TO YOU! I just know that 2011 is going to be even better! Blessings!