Friday, August 27, 2010

Lesson learned without answers

Yesterday was a long day at the med center. We saw my endocrinologist, my main opthamologist who is overseeing my ectopia lentis sitch, and my eye surgeon. The main point I gathered from all of it was that my hip fracture and my eyes' dislocated lenses are possibly all connected by faulty connections. They are leaning towards diagnosing me with a collagen disorder. Problem is it's incredibly rare and super hard to diagnose without genetic testing. Which is very costly for labs to do so you must wait until they are able to send off your blood for testing. Meaning, I will probably not have a diagnosis on paper for possibly 3 wks to 4 months.

This is all fine and dandy except that I do not want to have any more bones break. Collagen is the protein part of the bone. If that is not right, then you have weakened bones. The calcium is the mineral part- this is the part they have medicine to fix. The collagen/connective tissue is the part they have not yet been able to treat. It explains why the zonule fibers in my eyes are weakened and thus, dislocate requiring surgery. Again, it is beyond rare. The doctors have not seen someone like me. In fact, one of the docs is in talks with the Mayo Clinic which should be contacting me soon. An aside, I detest mayo. So basically, I'm at square one but with hives all over me from an allergic reaction to the last antibiotic I can take. I will miss you Avelox. You were so good to me. Hives suck. Period.

All that aside, I'm thankful. I do feel a slight inclination to compare myself with Job at times. Okay, so I'd be "Job-lite". Twice the laughs, with half the suffering! I do not mean to seem self righteous.

God has taught me something. He has taught me that sickness and the mystery to solve it can lead me to ruin. It can become an idol. And for me in the past, it has. A thought idol. Think about it. If I could just see this doctor, they'll know what to do. Or just getting this medicine. Or once I have this last surgery that will fix everything. But who does the surgeries? Who gives out the meds? What is the doctor? A human. And humans are human. In the past, I saw myself getting so depressed when no answers where found. Why did human answers regarding my condition bring me so much satisfaction or depression? Because I had my hopes all up in it. Fast forward to today. I have zero answers. I am in constant pain. But I am content. I am tired and I still cry it out, but the Lord gives me joy. For in my weakness I am still and can rest in His sufficient grace.

I do not need an answer. The mystery of my illness does not hold power over me. What if I got all those tests back and there was an answer but no treatment? Or no answers at all? What a waste of time and energy to dwell on those things. I will still have the testing done, but as for the outcome God will not let me stress. And I feel good.

Wednesday, August 25, 2010

The Screwtape Letters

Today I met a new orthopedic surgeon. Since the other one I was seeing doesn't put in screws. The news I got was that the type of fracture I have is on the compression side of the femoral neck. Aka the "wait and see" side. However, he did say I have some kind of joint-itis in my back/hip area. What are they going to do to fix that you bravely ask?
Injection!!
You didn't think I'd be exempt from having another random injection where there is no sunlight did you?
Sheesh.
But the good news is that that should cancel out the back pain. Of course that doc is on vacation. Must be nice to have those!!! I wonder, does he drink tropical drinks through a hyperdermic needle? No, it's cool. I'm thankful to go this shot deal next week.
In 2 weeks I return to get an MRI of what is going on with the hip. Meanwhile, I'm wheeling it up. Oh and I've already had a "Mac and Me" moment. You remember that 80's gem right? The Poor Man's E.T.?

Tomorrow I go to Dr. Petak to find out "What up with that?!" and Dr. Hamill.

OH and my super cool friend Mindee is letting me borrow her MacBook and I'm writing with it on my bed! I feel like I'm a journalist in a movie!!! Or some kind of new age Doogie Howser!!!

OH and JOhn and I saw Inception this weekend and it was so fun. I haven't had to think that hard since Finance class. But this was fun-thinking and didn't make me weep out loud like Finance...

Tuesday, August 24, 2010

Ah, "Screw" It.

Sorry I know the title is crass. John made me do it!

This weekend I slipped and tripped up the ol' hip. A hip trip slip.

Tomorrow I go to a new hip guy- loved the old one, but alas he doesn't do screws. So this is a good step/wheeling in the right direction!

Thursday, Pop Leelah and I will see Dr. Petak- hormone/bone disease guy and then Dr. Hamill- eye surgeon. Eyes are doing great! Praise!!! I can only see with glasses. W/o is not happening. But this is good!

Meanwhile, I'm feelin' the love more than the pain from Jesus through friends and family in so many ways.

God is good!

Friday, August 20, 2010

Week of Madness Review

Let's 'breakdown' a week in the house of Nichols shall we?
Monday- Day of Armageddon- what you didn't hear about that? Well, it was.
Morning:
Go to Dr. Petak- well actually his NP Cindy- to get more blood drawn for what they think is a disease causing all of my problems and low bone density. They said I need an echocardiogram done to rule out Marfan Syndrome once and for all. I found out that this Dr. Petak is one of 4 "world experts" who deal with the freak 29yr olds with hip fractures and Osteopenia. I also get a fun jug to take home so I can do a 24 hr urine test. WORST. TEST. EVER. The smell. People. Imagine, me crutching all over the house b/c yeah this stupid mondo-jug-o'-pee has to be refrigerated, -- here let me give you a fun description: CRUTCH, SLOSH, CRUTCH, SLOSH....
Anyways, I'm getting a ahead of myself here... But Pop and I did have the best freebirds lunch ever. I use hyperboles. Sue me.
Mon. afternoon
Leelah got to go to a Katy High School Cheerleading and Dance clinic with her buds Rebecca and Ryleigh. See the cuteness-






Leelah said she didn't like it. But I know she had a ball hamming it up for the cheerleaders. Thanks to my homeslice TIna for the pics. She is kind of my hero. I would have gotten pics of the actual performance but I STOOD (in sandals) IN A PILE OF ANTS AND WAS BUSY CRYING ON JOHN ON CRUTCHES!!!!!!!!!!!!!!!!
Tuesday:
Started the ghastly urine test. Can I tell you I hated it and was traumatized. For the reals.
Went to Dr. Whiteley because I got a sinus infection and my throat was so swollen I couldn't talk, eat, sleep, etc. Got some Avelox- PRAISE- and a steroid shot - PRAISE! John stayed home to help his gimp wife out. And you can bet I lounged and gasped for air all day. Totally felt like Barbara Hershey in Beaches at the end. Fun!
Wednesday:
I vaguely remember this day. OH yes! I got to drive for the first time since my eye surgery. It went well, but it does hurt my hip somewhat. But I was not letting anyone or obstacle stand in my way of delivering the monster jug of pee that day. MONSTER JUG!!!!!!!!! I apologized profusely to the lab for its contents. Disgursting. No I didn't misspell that.
Oh and Leelah was in her pj's until 5 o'clock that day.
Thursday:
Got an echocardiogram and a visit with the cardiologist- Thank you Mindee and William for the ride! And praise the Lord for my smart friends! I got the hookup let me tell you! I have a sweet friend whom I LOVE- Becky and she performed the ecg. The doc said my heart looks great!! Praise! BUT he does think I have a variant of Marfan Syndrome due to my dislocated lenses, hyperflexibility, long limbs, etc. Just in case you are interested:
This MIGHT explain why I have a broken hip. Might. He told me that he believes the heart problems are "incubating" - what so now I'm on X-Files? Great. But I thought the news was good. And hey, wouldn't it be funny if it all went together finally? OH and we had a super yummy lunch at Pronto in City Centre. So good and great prices! When it comes to restaurants in Houston/Katy, I think I'm omniscient. Only about restaurants. I so wish I could be food critic. But I hate creamy white sauces. It would never work.
Friday:
Splashpad with friends!! Yay!!! Normalcy!!! Maybe hit up the ol' HEB Plus in the scooter- what, what!?
Next week:
We meet Dr. Petak. He will have gotten my pee test results, blood results, and hopefully we can figure out why a 29 yr old has low bone density and a broken hip. God willing of course!:)

Wednesday, August 18, 2010

Choosin' Joy!~

So I have these hip friends, Jami and Felina, who came up with a fun business known as "Word Junkee". Words and me go way back. Chances are if your vocab is extensive and straight up capacious, we're friends. I digress! So Word Junkee has these cute "Swagger Taggs" which hold your carpool signs in your car. Since I am homeschooling this year, I've decided to put my own 'spin' on using my tagg. I scored one this Saturday at the Mommy Expo and I've been using it, God willing, to witness. So when people see this:

and see me sportin' my wheelchair while holding onto my crutches and wearing my "BDG's" (Big Dumb Glasses that are my sunglasses over my real glasses) on account of the googly eye issues, people will know that I:

It goes without saying that I am not a photographer.
There I go using pleonasms and being all redundant!
And I do by the way swag up my wheelchair! See for yourself. Okay so the wheelchair is currently indisposed in my trunk and too dang heavy to get out.

That's how I roll.
So check out "Word Junkee" on Facebook!

Friday, August 13, 2010

The News...

Thank you for your precious prayers that were felt today and last night. THank you!
We just got home- Leelah, Pop, and I about an hr ago from a day at the Retina docs and lunch.
After visiting with 2 vitreous docs and having a flourescent injection to detect the bloodflow of my retina (why do I always have to have injections!?) they have determined that the cloud I've been seeing constantly in the right is in fact called, Light Toxicity. Permanent damage caused by light through the microscope from my 2 hr surgery last week. The bummer is that it's permanent and I have to get used to seeing around a cloud in the central-lower part of my right eye. The good news is that it is not a stroke as they first told me yesterday and this morning. Thank God for such fast results!! And for clear results! And for a doctor that had heard of it before as, of course, it's extremely uncommon. Your prayers help and are felt!!:)
God is so good in shepherding me through this with his love and care. I'm already adapting to seeing around it and coming to terms with the situation. I mean, what else can I do!?
More God-good news is that my left eye is stable after 2 years of surgeries and I can now see 20-40w/glasses! Praise! They said it's almost impossible after having endopthalmitis to even keep the eye let alone see. God is so good my dear friends.
I also found out today I have Osteopenia- probably misspelled. It's not Osteoporosis, but almost. My bones are weak. I go see the bone specialist on Monday. Maybe I'll get to see a full-out skeleton or something cool. So more praise there in me not having full-blown Osteoporosis!

Thursday, August 12, 2010

Prayers needed pretty please.:)

So friends...

Got some not so hot news for y'all. Today we went to visit my eye surgeon for my one week out appt. I just casually mentioned "Oh and I've been seeing a strange cloud and it's not blood." He dilated my eye and found something on my retina that alarmed him. He said it's like a spot and it's swollen. I guess I finally have a "brain cloud" for those of you familiar with Joe vs. The Volcano- anyone?

If you could please pray for my emergency appt tomorrow with the retina doc, I would sure appreciate it! There's no limit to what God can fix and or teach! I'm ready for both!

Thanks, God Bless and gig 'em!

Tuesday, August 10, 2010

Princess Prep School!!!

Once upon a time there was a little girl with golden brown hair named Leelah from Frumpytown....

Who got to take a quest to PRINCESS PREP SCHOOL at the church of Second Baptist in the land of Katy to become a true princess and learn all about wearing the crown!

It was but a shame that her shabby mother, the one who limps and squints, could not volunteer. But alas made it to see her beloved sweet one's wondrous performance! Where Princess Leelah laid her crown down for being a daughter of the KING!


What a lovely story that Princess Leelah got to share with her fellow Princess Rebecca of the House of Vining!


Talk about a reason to live!! This was beyond precious!!! Leelah is still praying her princess prayers and telling me all about it. The End!

Monday, August 9, 2010

Am I a lemon?

Just in case you were wondering things are okay around here. I'm writing with 400% zoom on - it's nice you should try it!

The surgery went pretty well. It took a total of 2 hours and once Dr. H got in the eye he was very "surprised" at the shape the right eye lens was in. It was "a mess" he said. Way worse than the left. Which he did not expect. He said he didn't have a clue why I even was able to see with it at all. I know it's because God was holding it just so to get me to this point. He actually had to use segments of 2 rings to piece it together because the lens was so misshapen and out of whack. It was a booger of a surgery for him from what I can tell. Superficially, it freaks me out to look at it for too long. I have had many panicky moments after staring in the mirror at it too long. It's just crazy red. The reddest ever. The pain that I get when my eye grows a capsule/wrapper (scarring) over it is back. Boo. So is the smudge. So I cannot see well out of it. There was one day where it worked pretty well. Now we have to wait for the inevitable YAG laser to clean it up. Possibly 2 YAGS the why my body works. Dr. H is stalling on that. Which is very disconcerting to me. Oh well, one more thing I can chute up to God to handle.

I go see Dr. H again this Thursday.
Meanwhile, back at broken-hipsville, USA I go in for my bone density test tomorrow. Sweet! I've been taking calcium like it was chips and salsa. My hip does feel a lot better since I've been crutching and wheeling (thank you Hall family!!) around. Praise! The naps have been a plenty and for that I am thankful.

Let me just tell you, I have seen Jesus at work through so many lives. The friends that bring us meals- thank you! The rides I get. The offers to come and clean our house!? The Leelah-watchings- thank you!! We are just overwhelmed with love. It has been so nice to see people being the hands and feet of Christ in helping our family. And the prayers! They are indeed felt. My in-loves came to stay and help us out. Sigh of relief. That was so needed and the time was precious. Mom and Pop we love you.

Leelah even got to watch some of shark week! Which leads me to my list of excuses for why I have a fractured hip. You see, I just got tired of saying "I don't know why it is broke." Or "Possibly from Osteoporosis" So now I just pick from this list: (Yes, I seriously do say these to people)
How did you fracture your hip Gillian?
Me:
1. "Shark Week"
2. "From an unfortunate logging accident"
3. "I'm becoming a pirate"
4. "I did a stint on that show, Deadliest Catch"
5. a new one: "I fractured it so I can unfracture it."
6. "From being a mom"
7. "Everyone's doing it"
8. "I love Scrabble!"

That's all I got for now. I will leave you with a Leelah quote:
"Mom, is your leg hurt now?"
me: "Yes, but I will be okay."
L: "Ahhh, now my mom's damaged!"

Tuesday, August 3, 2010

My hip bones connected to my, uh no-thing!

Thanks for your prayers. Yesterday was so so tiring. But I'm thankful that we live in a city that has such a superior medical center all just a drive away.
I saw Dr. Lewis- flubber smart guy, Dr. Hamill- cheeky eye surgeon, and new internal doc Dr. Whiteley.

My father in law helped me get around the entire day- so so blessed!
Dr. Whiteley had me do a blood test for some things. She said she's confident there's no tumor on the bone b/c the MRI would have shown that. She is leaning towards me having osteoporosis- which you just take meds for. Can I just implore you to get some Vitamin D happening in your life? I did not take this seriously. Especially if you are post-hysterectomy. Do it.
I have to have a bone density test some time soon. If all these tests
do not produce answers, then I will have to go to a bone specialist.
I can't tell you how much I've felt your prayers. THank you so much.
God has got my back (and my hip and my eyes!).
We are still waiting to hear about my surgery time for tomorrow- I had to have them move me around so we could say a proper goodbye to Rose and Daisy. So possibly around 12:00 tomorrow.
Thanks my dear ones!