The Results Are In....Well, Sort of....

Before I move on with things, first let me say Merry (late) Christmas, Friends! I hope that the holiday came and went with joy for each of you. It's so hard to believe that the year and decade just has a few more days left in it...where did the time go??? Let's see.....when the decade began, I was a single mom still working in radio...WOW that one is hard to believe. It seems like another lifetime ago. By late 2000 my life changed when I decided to take a hiatus from radio, decided to temporarily sell furniture and wound up meeting my future husband (even though he was clueless that I even had a crush on him & didn't start dating til February '01 lol) Graham and I were so immensely blessed to have found such a wonderful man to love us and we were married in 2002 & Emalea joined our family later that same year (what can I say....I did marriage and kids a little backwards). Moving to Tennessee where we didn't know a soul, Graham being officially diagnosed with Autism, homeschooling and so many other milestones and events have filled up the last 10 years. As a family unit we've experienced more hardships than we probably anticipated, but I can now say that we've come out the other side a strong family unit. Of course that's a severely abbreviated version of my decades worth of nostalgia. :)

I've had several friends ask me to update when I get test results from Seattle and learn something new. Last week I received a packet from Swedish Hospital with (most) my test results of my week out there. Results seem to be really up and down, roller coasterish if you will. I have a few low results including my T4 (thyroid) and my IGF-1 (growth hormone), a couple of pretty high ACTH levels and some moderate cortisol levels. The CT scan of my adrenals showed some mild thickening at the apex, but they were unable to identify a focal nodule, which they can typically see. This afternoon Dr. Ludlam's assistant, Jennifer (LOVE LOVE LOVE that girl!!) called to go over the results (they didn't know they had been sent to me already, but was good to have someone to go over them). For the most part, they found most of my results to be normal. My highest UFC was a 25, but the reference range goes 0 to 50, so even that is smack in the middle. My Dex suppression was normal and with the exception of a 6.58 overnight cortisol blood level, most others were normal as well. I had one ACTH level that was particularly elevated at 57.9 and they said that that and the 6.58 were at least indications that something is going on, just not diffinitive enough to make a diagnosis yet. The two results that were low were their biggest concern at this point. My low T4 level leans toward hypothryoidism so they are starting me on a thyroid medication to see if that makes any difference in how I feel. They said that underactive thyroid is dangerous if untreated, but low growth hormone is not, neither of which I knew, but found interesting. They want to do continued testing, most of which I can do at home. More urine and blood tests need to be done when I feel "good", but they also want to do growth hormone testing, which I would have to go back out to Seattle to have done. Money alone, makes that impossible any time soon, and they say that if I need to, I can go out a year from my last appointment, but that also means waiting til December. More waiting means waiting longer to continue the search for what's wrong. But we'll do what we have to do. In a nutshell, my levels (and CT scan reading "interesting") were just high enough to lend to something being wrong (and quite possibly Cushings), but not high enough to diagnose with Cushings just yet. So tests, tests and then some more tests. YAY!! I called Scott to let him know (working) and I felt so bad because he was so disappointed. I anticipated the additional tests, after all, nothing (and I do mean nothing) with me EVER goes simply when it comes to the medical realm. He thought for sure that they would give a yay or nay verdict right off the bat, and, well, obviously not what happened.

Thanks so much to all of you who are following this and taking the time to read my ramblings. I tend to forget that I have this blog, so hopefully I'll remember to keep writing!!

Much love to you all & I hope you have a most EXCELLENT New Years!!! Make a good one & BE SAME!!!

Seattle, LAST DAY

*sigh* So the end of my week is here. It's kind of odd how terrified I was coming out here & now I don't know how I feel about leaving. I cannot WAIT to get home and hug and kiss my kiddos & Scott, it's helped tremendously that I have talked to the 3 of them all week through Skype (GREAT invention, by the way).

So the day is done. Wow. I had my PICC line taken out around 10 this morning, after having my dex supression test...an hour of 2 vials of blood taken every 15 minutes. I watched as my nurse, Sig, started pulling the line out. All I could think of was "HOLY CRAP!! When will it end?" that thing, seriously, had to have been over a foot long. I finished up in Ambulatory with "my girls" and immediately burst in to tears when Sig gave me a hug. My nurses down there really were a saving grace for me this week. I saw them basically every single day I was here & they were so funny & dynamic & can say that I am truly blessed to have met them.

I think what I really found this week was myself. Maybe that sounds weird, but I really feel that. I feel closer to God, closer to my friends & have found that I have true friends where I never saw them before. My heart is full. Not knowing anyone here really pushed me to be, well, ME! Friends, some of you might say that I am "too perky" or a people pleaser and I have tried to tone it down for some time now, because I have felt like that is what I was supposed to do. I found that girl again this week and it just happens to be the girl I am. You can choose to like or love that about me, it's ok, but i LIKE making people smile, I LIKE making people feel special, like they matter, if to no one other than some strange girl that commented on how pretty your scarf is in an elevator. For heavens sake, the dining room workers all knew who I was by the time dinner rolled around tonight, because all week I had made a point to forge whatever sort of relationship I could with them during my stay here.

The only thing (aside from needles & blood draws in the middle of the night..lol) that I hated most was being alone. I don't do alone well, although I was so proud of myself this week. Seattle is a huge, rather daunting city and I stepped WAY out of my comfort zone and journeyed out on my own. ALONE. It was exciting, awe inspiring and bottom line...FUN. It was well worth every bit of exhaustion and pain that my body felt, which isn't something I can ever say.

I think that before this trip, I have often felt that I care for my friends and family much more than is reciprocated, maybe it's just in my head. As a stay at home mom, and in addition "sick", you tend to lose your own identity. I am hoping that some people maybe have a new perception of me, a new respect for me and what I go through and do on a daily basis when I get home. I deal with more fears than almost anyone knows, except my husband, every day & I just keep hearing my mom's voice in my head. She keeps telling me this week "you are exactly where you need to and doing what you need to be doing." I doubted it for a bit, but see it now.

Now, only time will tell what will come of this week. But what I have come away with is maybe worth even more. I found me. I embraced myself. I have a stronger bond with God, and I have felt more love and support from my friends than i ever imagined. I started this blog more as a way for me to feel closer to something, to get my mind off of what I was afraid of. I didn't really think that anyone would read this and for those who have been following, thank you. Thank you for caring. I have felt you all here with me, which has filled the void tremendously.

I love you all so so much & am honored to call you friend.

Seattle Day 3, Part AWESOME!

Holy sweet peppers I had a day!! I chose to step out of my comfort zone and (for the first time ever) rode a public bus to downtown Seattle for an adventure!!! My knees and back prohibit me from doing as much at once as I would have liked, but I knocked out a huge chunk of my to do list & it was AWESOME!!!!

I started out the day uneventfully with my CT scan of my adrenal glands. I have the cd of it, but no drive on my netbook to look at them, which is driving me bananas. I had to do a great bit of waiting and got REALLY bored and EXTREMELY punchy. The proof is in the photos. This sign, for whatever reason made me smile

Next I found extreme amusement in this:

The box reads "Your comments are important to us. Thank you." THAT is not what I found funny. What WAS funny was that the box was stuffed and actually overflowing with comment papers that clearly hadn't been emptied in some time. So now you tell me...just how important are the comments to them?? lol Maybe just me, but I thought that was hilarious. Now here's the punchy part of the morning. I made a friend. He was very tiny with bright blue eyes and as we talked, the more impressed I became. Feast your eyes upon Mr. Fingers' photo of his days as a race car driver, tryin to impress the ladies....Lady Fingers, if you will.

CLEARLY I have issues (and WAY too much time on my hands!) Now on to the rest of my day!!

With pep in my step (for me..lol) and a smile on my face, I set out to experience Pike Place Market, and anywhere else I might end up along the way. Now I have to start by saying something that makes me sound like an idiot. I had NO idea that Seattle was a continuous series of crazy hills!!! It was like watching the opening credits of Full House and seeing the streets of San Francisco! As I turned on to Pike Street I saw different boutiques and kitchy businesses, each unique and carving out its own unique space. I then got to the crest of the Pike Street hill and what I saw took my breath away. I don't even think that the picture I took will do it even miniscule justice.

I made a beeline for the street level entrance to the market, which was buzzing with patrons, the melodic sounds of street performers and bursting with the colors of an array of fruits, vegetables and the freshest fresh fish I have ever set my eyes upon. There were several fresh fish vendors, proundly displaying the catches that had just come in off the boats this morning, but only one seemed to strike a chord with the passers by, including myself. Three or four young men in their mid to late 20s playing to the growing crowds, making the fish "fly", telling jokes, and scaring the tar out of (mostly) women getting close to a huge, ugly monkfish to take a picture. Little did these unsuspecting folks know that they had the monkfish tail rigged to where they could tug the tail and the fish appeared to jump out. HILARIOUS! Gorgeous pinkish orange salmon on ice and a huge fresh octopus were just some of the wares they had on display for purchase.

It was truly an experience I will remember forever. Vendors from different countries, with unique visions for the items they were selling. Fresh cut flowers with colors so vibrant and fragrances so sweet that they could easily evoke emotion. Here are some more pictures from my Pike Place adventure.

I ended my day by getting back on the #3 bus (only after getting lost...which is how I stumbled upon the Winter Wonderland where the carousel was located) anticipating my return to Swedish Hospital and my small, yet cozy room that was calling my name. When I got ON the bus it was packed as tight as a sardine can. Once the passengers were down to just me and my friendly bus driver, I asked him to let me know when we were close. That is when he informed me that I had gotten on the #3 going in the wrong direction, and that while it WOULD get me back to my destination, it wouldn't be for another 40 minutes or so. I was too sore and tired to feel upset, and at that moment could only laugh it off. Where did I have to be? I embraced this change in plans and saw it as an opportunity to see ALL of Seattle, parts I never would have seen otherwise...and all for $1.75. Rolling hills, sweeping, majestic views of Lake Washington and different mountain ranges, magnificent architecture, and a cast of ever changing characters/passengers made for a truly unique experience.

It was a wonderful day, free to escape the walls of the hospital. It was funny though, how at the end of the day, all I wanted to do was get back to the tiny room I had started the day eager to escape, if only for a little bit. Tomorrow is another day. I'm excited to see what it brings.

Seattle Day 3, Part 1

Good morning, friends. I want to start the day by thanking you for all of your prayers and well wishes, they have brought such calming to my spirit, which means more than you can possibly know.

It was another night of blood draws every 4 hours, and my body has decided that it does not need to sleep, apparently. I got a great nap in yesterday between my noon and 4pm draws, and then didn't sleep again until after my 4am draw this morning. I'm fairly certain that since the draws started at midnight Tuesday I've slept about 8 hours in all...and that's being generous. But my brain seems to disagree and right now I'm not tired at all. One nurse asked me how it is that I am so friendly and "red faced" (assuming she meant rosey..lol) on such little sleep. She said most people going through this regimine are reeeeaallly tired, dragging and non talkative. I have no explanation.

About 40 minutes ago I had my LAST BLOOD DRAW!!!! HURRAYYYYYY!!!! I turned in my 2nd UFC test right after, salivary tests are all packaged and being sent out today. Productive morning, I'd say...and all in less than an hour span. Right now I'm just waiting for the pharmacy to open so I can pick up my Dexamethasone pills (which I start taking at 1pm) and then I check in to admitting for my CT scan of my adrenals at 10:30am. CT needs to hurry the hippidy dippidy up though.....had to fast this morning and mama needs COFFEEEEE!!!! Aside from all that I have nothing scheduled for the day. Kinda weird. Just take a pill every 6 hours, tomorrow too.

It's another remarkably beautiful day here in Seattle. It's the kind of blue sky that belongs in a crayon box with not a cloud to be seen. I'm in my room looking out over downtown Seattle and like how the city city is the center of all this serene beauty of water and mountains. I seel all of this grand scenery and it's almost like it's all hugging the city. It's almost, I don't know...cozy.

So that's it for the time being. I don't get the PICC line out just yet..not til Friday after they do the Dex Suppression test. I hope you all have a truly blessed and wondrous day, as for me, maybe I'll venture out. The idea scares the crap out of me, but I don't want to regret NOT going out and experiencing this city first hand when I have the opportunity. We shall see!!!

This was the happy look on my face on Monday before the PICC line went in. lol I forgot that I had taken this and a picture of the room when I blogged yesterday, so I'm inserting them now. You can see for yourself just how warm and cuddly the room was and how inviting and calming it must have made me feel.



Anyway, on to the fun that was today. Ya'll got a glimpse of the excitement in the middle of the night with Part 1 posted earlier...man it was a rough night!! I'm now down to just four or five more draws til I'm done with this part..YAY!!! My arms are so bruised and sore it isn't even funny. Quite frankly, I'm just hoping that I still have some blood left when I leave here! lol

Let's see, what else eventful happened today? Oh, yeah. I have a possible infection spot that we're watching now. It came on in the middle of last night and hurts. Doc said that if it starts hurting more or getting bigger that I may have to be admitted in the Emergency Room. That's all the detail I'll give on that, but it was something that had me a little freaked out today.

I had a great lunch today. Really I've had some great food since I've been here. Two thumbs up to the dining room here!! Clearly I was bored (and between naps) so I snapped a shot of my lunch. lol



The majority of my day was spent sleeping, when I wasn't having blood drawn, that is. So sleep deprived and it doesn't help that I seem to wake up every 30 to 60 minutes after I pass out. So when I am sleeping, it isn't rejuvenating at all. My nap between 12:30 and 3:30 this afternoon was pretty good though. And if you don't believe how tired I am, judge for yourself :)

So now here I am, watching some tv and treating myself to a grande eggnog frappacino from Starbucks. YUMMY!!!! Love to you all that may happen to be following this I'll talk to you very soon!!!!

Seattle Day 1, Part 1

Well here it is & here I am!! Yesterday was A LOT for me to take in, and I was just a mess. All glory to God for protecting not just the flights but my spirit as well. I know full well that I could not have conquered it all without Him. Prayer, people!! It's a good thing!

Getting to sleep last night proved to be challenging...chalk it up to being Sleepless in Seattle, I suppose. I honestly didn't expect 2 hours to be that altering, but boy was I wrong. It could have been jet lag too, but I don't know what that feels like, so I can't objectively judge on that. I settled in with some tasty fare from the dining room downstairs (seafood fettucini alfredo and steamed broccoli YUM!), unpacked, called my mom as well as Scott and the kids and after all that vegged watching some tv. Before I knew it, it was 1am my time and I'm pretty sure I didn't fall asleep til closer to 2am. I kept waking up all night because I was afraid I was going to sleep through my alarm and miss my morning appointments. So, 6am local time I awoke to begin my first day of Camp Cushie.

I don't know how I feel yet. The nerves are definitely still there. I really really wish someone was here with me to help take the edge off and preoccupy me. Sure, I can talk to myself..lol..and I'm sure I will, but it isn't the same. Let's see what is on tap for this morning? 7:45 am I get to check in to Admitting downstairs to set up my account, I'm scheduled to pee (yes you read that right) at 8am, which marks the start of my 2 24 hour UFC tests and then at 9am I get my PICC line put in (YAY). At 2:30pm I have my first appointment with Dr. Ludlam, which I'm finding myself both nervous and excited about. I'll let ya'll know how it all goes.

Oh, and did I mention that I feel like a giant in this room? lol I am so not kidding!! It's a great little room, I don't need anything other than what is here (and I've already rearranged the furniture to make myself more comfortable..lol) Pictures are posted above to give you an idea, but I am actually TALLER than the shower head!!! I'm not typically taller than anything!! It amused me, if you can't tell.

So that's all for now, I'll journal more later. Thank you so much for all of the love, support and prayers that I have and continue to receive. I know that I am blessed to have such wonderful people as a part of my life.

Til later.....Toodles Monkeys!!!!

Seattle Day 2, Part 1

TIRED!! The one word to sum up how I feel right now, but sleep is fleeting and hard to come by. I just got back upstairs from my 4am blood heisting, and it's already my third since midnight. I'm lucky that my overnight nurse is really sweet, but sleep...ahhhhhh. So I am just 4 hours in to my 32 hours of blood draws every 4 hours. I doze off for a half hour or so, but then jolt awake freaked out and panicked that I have slept through my alarm and screwed all of this up. Ugh.

Well aside from the uneventfulness going on with me at the moment, I suppose I should update ya'll on the remainder of my day yesterday.

I got to meet with Dr. Ludlam & LOVED him!! I'm so used to doctors looking at me like I'm crazy when I tell them about the entire laundry list of crappy symptoms going back to 2003, and that wasn't the case at all for once! In addition I can't talk about any of this without bursting in to tears, as some of you may have first hand knowledge off (lol), it's just such an emotional thing. I felt comfortable here though. I even managed to get his physician's assistant, Jennifer (SHE IS FAN FREAKIN TASTIC, BTW), to tear up in the midst of my breakdown. Overall, just really good people. Dr Ludlam looked at my 2006 brain MRI and did see my cyst (in all its glory), but couldn't tell anything on the pituitary. He did, however, say that tumors on the pit are REALLY hard to see, so that's no cause for concern or question. He also said that going off of my history of pictures that I brought with me and my symptoms alone he thinks that I fit the bill pretty perfectly. Unfortunately, the picture and symptom histories don't determine anything, they're just the first stepping stone, so now it's all up to biochemistry. I was never good in chemistry. I had a weird chem teacher in high school that had a Barbie doll straddling one of the beaker holder/gas pipe thingies. lol...Not that that has a darn thing to do with any of that....lol

So now you are up to date. Today will be filled with blood draws every 4 hours, so hopefully I can encounter some amusing human idiocy or SOMEthing to entertain me. If so, you'll hear about it!

Much love & have a TREMENDOUS TUESDAY!!!

Seattle Day 1, Part 2

So it's 12:36pm, local time & I am sore and exhausted. Crazy to think that this is just the tip of the iceberg of what's to come in the next 12 hrs. I got admitted this morning and was instructed to eat breakfast...not my norm, but I complied. But before heading off to the dining room, I was given 2 nifty gift boxes....

Ok, so I lied...not exactly "gifts, so much as 2 24 hr UFC collecting jugs and all of my blood and saliva tubes for the next 32 hours. YAY!!! lol

After breakfast came my scheduled appointment to have my PICC line put in. In case you're wondering what that is, it's a long, skinny, flexible tube that is typically inserted in to a peripheral vein (usually in the upper arm). The tube is moved along until the tip of it is in a large vein in the chest near the heart to get intravenous access. The women that came in to insert my PICC assured me that they are very simple and that they have been doing them for 20 years so I felt as at ease as I could be. The short story is that what should have been "simple" took over an hour for me. These poor sweet ladies and they just kept saying "Oh my, such tiny veins!!" They tried inserting the tube 4 different times before it finally took & one of those times I started jerking all over because the tube kept hitting different nerves so it felt like I was being electrocuted. Really? Why can't anything with me just be SIMPLE??? Here is the pic of the arm they tried...

And that's on the arm that DIDN'T take!! So pretty! lol Now on the arm my PICC is in, you'll notice the large bruise under it where it didn't take the first try.

So that has been the fun of the first part of Day 1 here in Seattle. Now with all of that said, I'll show you the things that have made me smile today!! I think the first speaks for itself:

The next ones are the view from my room. All the way here people kept telling me how overcast Seattle is and that you can't really see anything. If that's true, then a day like this is from God, plain and simple. You can see the Space Needle and past that, which I hope you can see, are snow capped MOUNTAINS!! It's just breathtaking...

So that is my update halfway through Day 1. Check back for more later if so inclined!! I'm finding that writing here is, at very least, therapeutic, if for no other reason than for a brief moment it takes my mind off of things.

Toodles, Monkeys!!!