It's Monday again! And I realize I have not posted in a long time (almost 2 weeks!) Many reasons exist, from school (two words: Nursing Research) to crazy schedules to extra nannying to grieving the loss of my fiance. But nevertheless, I thought I'd spice things up a bit and show you what I've been up to this past week. (Courtesy of the iPhone...)
Last week, we started the week by celebrating Bryce's seventh(!!!) birthday at Applebees. He and his brother both are practically my size! I told him I remember the day he was born. Talk about feeling old. He was so excited to get lots of outfits and lots of Nintendo DS games. :)
Tuesday, we went to Ikea. The closest Ikea is in Pittsburgh, and I usually only go there with Jonathan, but this time I went with my mom and sister. I bought a Malm 3-drawer dresser to replace my cheapy Wal-Mart 3-drawer piece of junk that is losing the bottoms of 2 of the drawers. I then assembled the Malm 3-drawer dresser all by myself, complete with screwdrivers, nails, cam locks, and lots of other fun tools and stuff. I was quite impressed with my efforts, especially after my mom didn't think I could do it. (And Mom thinks I can do anything! In fact, yesterday I asked her if she'd be proud if I won the National Juggling Competition - long story, saw it on the news... - and she said, "Well I'm your mom, so of course I would be! Moms are proud of everything their kids do." Right, ha!) I also put together a new chair for my desk since my chair now is the most uncomfortable thing you could ever sit in. This one is pretty much the same, only more expensive (hopefully better quality!), is a lot comfier, and has a bright pink seat on it! Fun!
After the break-up, I changed a lot of things in my life. I started parting my hair on the opposite side of my head, I cleaned out my closet, I started doing things differently... lots of other things I can't think of at the moment. One of such changes was re-painting my bathroom. It was a nice almost-lime green (not quite that bright, but pretty and cheery) and I decided to paint it a medium, light-milk-chocolate brown. The last time I painted anything, it ended up in a disaster, so my mom is paying my unemployed aunt to do it since she is a good painter. To make a long story short, today will be the 4th day that my bathroom's contents are between my bedroom, the hallway, and my Dad's side of my parents' bathroom. My bathroom could have easily been sanded, primed, and painted in two days max, but yeah... Lots of long stories involved here. Not to mention Haylie's discovery of her Nicorette gum which almost landed us in the emergency vet all night Saturday. (Apparently, nicotine poisoning is a huge deal with dogs, and seeing that my mischievous girl is a mere 12 lbs...) Anyways, I am babysitting this morning, but when I get home, I'm hoping I'll be able to move the contents of my bathroom back into my bathroom. I've been working on finding new wall art for my new bathroom, too. The last things I had on the wall no longer match, and change is good, so I have been shopping for the perfect signs, photos, plaques, whatever. I have a few things in mind, so we'll see.
Babysitting has been keeping me very, very busy lately ... my 2 nanny girlies and then my little guy quite a few nights lately (and then this AM at 6!)...
Oh, and not only am I building things (chair, dresser...), but I also successfully moved my broken external hard drive into a new case all by myself. The Ex was so sweet to "diagnose" the problem and told me what to buy, and using the instructions, I moved my real hard drive out of the broken casing into the new casing. I snapped things and screwed in the pieces, and the hard drive actually works now! I'm so proud of myself for that, too. :)
Just in time for me to get my new Ugg boots, the snow is melting and after a month of record snowfall here in NEOhio, it is supposed to be in the 40's and 50's all week long. Of course, I'd rather have nice weather than snow, but I'd also like to wear my $180 boots more than twice before the season is over!
Back to last week, I finally went to the LifeBanc training course so I can participate in organ-donation-awareness events. I have been with them since summer and even was on my way to an event (but had to go home since I was sick... another long story), and I was scheduled to take the course back in November but couldn't due to it being two days before Thanksgiving... so finally, I got it done this week. It was fun, and I learned a lot. I'm now "officially" allowed to volunteer when before, I think they were only letting me because of my own personal organ-donation awareness and my heart-wrenching I-need-a-liver personal story. ;-) April is Organ Donation Awareness Month, so there will be another post coming soon, I'm sure.
My cousin took today off and is coming over later to hang out. We're going to see Alice in Wonderland tonight. Honestly, it looks a little freaky to me. We'll see...
This week, I start clinicals again - Geriatrics/Rehab - after taking the first half of the semester off (as far as clinical courses go), and Wednesday is our first lecture. Then we go to 2-day/week lectures and Tuesday clinicals at a nursing home. Honestly, I'm not looking forward to this rotation, but I wasn't looking forward to obstetric nursing either, and I really ended up enjoying it. We'll see!
Found this in a magazine, quoting Vera Wang... Love it.
I cannot stop watching this video and wishing I was there! Nikki emailed it to me. :) We're a mildly obsessed with Disney World and the Magic Kingdom.
Next up, do you realize Christmas is less than 12 weeks away? I have no idea how I'm going to pull it off this year, you know, while I'm busting my butt in nursing school and trying to even just barely maintain sanity. I have a feeling lots of you are feeling the same way, and I'm loving Simple Mom who has a plan. 12 Weeks to a Peaceful Christmas. (Yeah I laughed too at first, but I think she's onto something!) First up, Week 12: Prepare Your Holiday Budget and great topics each week until Christmas. She has plans and downloads, and I think I might just be able to pull it off. I love you, Simple Mom!
For some cute pictures of pets in Halloween costumes, you have to check out Good Housekeeping's 3rd Annual Halloween Pet Costume contest. I won't enter Haylie seeing how much she loathes any form of clothing, but I wish I could! She was a ballerina one year, a pumpkin another... but she just hated it so much. People like my cousin (Hi Heather!) will love this site so check it out. A great time waster too. You know, when you have a huge nursing exam in the morning... yeah, perfect for that! ;-)
Well last week was nuts, this weekend was packed (I took Nikki to the Taylor Swift concert - got floor tickets for her birthday), and this week is going to be no calmer! I'm excited though because on Friday at clinical, instead of working on the floor I get my "alternate experience" which is outpatient oncology. That means I get to hang out with the nurses there all day and see what I can learn. It should be really fun, and I'm excited about it. Then the following week is our last week of peds! The remainder of the semester is Maternal-Newborn Nursing, which honestly, I'm not looking forward to. But we'll see, maybe it will be better than I think. Hopefully so. So today I'm studying, tomorrow is class and an exam, my first experience with acupuncture (not even kidding), and then Wednesday I have my girls. Their mom made L Bug's 2 year old and Baby's 1 month appointment to be at the same time which means double shots, double screaming, double the fun. Good thing I have Thursday to recover, wait, scratch that, I have Thursday to finish my 12 page nursing paper which is due the following week. The fun doesn't end!
I've been so busy lately, but so much fun (and drama...) has been going on!
Nannying, as usual. Little M has stolen my heart - as I knew she would. The girl who would throw tantrums and scream at me now tells her mommy I'm her favorite babysitter ever. On Sunday I found out that I wasn't the only one sad about her going back to preschool in August. Mom told me she couldn't take me away from Little M and asked if I could keep her one afternoon/week. I think you know how the rest of the story goes. The list of kids who have stolen my heart is getting pretty long. Logical? Probably not. Predictable? Most definitely.
No new breaking medical news to report. Surprising, right? Just working on some big, tedious projects and lawsuits that involve record sifting and brain cramming and all kinds of fun like that. My insurance company owes me money, my car wreck has to be taken to court in less than 2 months (or otherwise it's too late to claim), my specialist and I are fighting my insurance company to appeal their denial of my transplant, and I have a few other similar things going on. Oh and there was yesterday. It started innocently enough... some lady on eBay decided she was going to go a little insane with the packing tape. Good packing isn't bad, I guess. BUT In my efforts to get through the tape and into the box with a big pair of scissors, I somehow managed to slice them into and across my left thumb. [Sidenote: Keep in the back of your mind that with my liver disease, I have an extremely low platelet (the stuff in blood that helps it clot) count, meaning when I bleed, it doesn't easily stop. Also because of the platelets, when I get a cut of any sort, it takes many weeks to heal. Because I have a very low amount of white blood cells, I'm at high risk for infection.] I hate to sound all exaggerating, but this cut was most literally just pumping out blood. Of course I applied pressure, and after a few minutes when it wasn't stopping, I called my mom. I was able to get a look at it through the blood, and it was a big half-oval kind of thing meaning there was a deeper gash underneath the flap of skin. I didn't get the impression it was going to stop without putting on a fight, but I didn't want to go to the ER over a tiny cut, so we called my primary care doctors office. They said they couldn't get me in for just over an hour. (Seriously.) They also said they didn't know if they did stitches there or not. (Seriously again.) So we called my insurance to see where we could go since they changed all the urgent care rules. After a disconnection and about a half dozen transfers, we finally reached a lady who gave us the name of an urgent care facility 10 minutes from my house. To make a long story short, we finally got the bleeding to stop (and with no extraordinary measures! yay!) and the doctor cleaned out my cut with betadine and then put Dermabond (a "Super Glue" for skin) all across the cut to seal it closed. He bandaged it up and I was good to go! I've never had real stitches in my life, and I'm thankful that there are so many stitches-alternatives for minor lacerations these days. Right now, my thumb is quietly throbbing a nice aching pain, but it's bandaged well, and I'm relieved I have Dermabond on it because my skin doesn't just heal on its own. Gotta love happy endings. :)
I've spent the last couple of weeks getting in touch with my great-uncle who has been hooking me up with all kinds of genealogy goodies, and last week, my grandma revealed her basement-full of albums that I'm scanning for her. I'm so excited about all of this since I've been meddling in genealogy since Nanna passed away. Plus I just love pictures! :) I must say... my dad was a pretty handsome looking young boy... (snicker snicker)
I'm SO missing my Nana. I think my mom is too because she's been talking about her constantly lately. Poppop comes over for dinner a few nights a week, and without fail, Nana comes up each night. Not that I mind - she has a beautiful legacy - but it still hurts so badly to even say her name. I especially hate when they talk about her last days on earth because I wasn't there. I had a flight all ready to go but my dad wouldn't pay for it thinking Nana would be gone before I got there. Well, Nana lived a few days after that and I never got down. If I had the money, I would have paid it anyways just for a chance to talk to her one more time. To see her face one more time. To touch the lines on her hands one more time. To tell her I loved her (and not on the phone), to tell her that her Mandy Mine was there with her.... one more time. Each day is getting harder, too, because her birthday is 5 days after mine... August 7th. My mom is wanting to make birthday plans for me, but every time I even think of my birthday, my mind instantly goes to Nana. When I see flowers, I think of her. When I go to Macy's and see an outfit she would have worn, I think of her, want to buy it, and then remember she's not here to wear it. Poppop was hoping her headstone would come in by her birthday, and I hope so too. We spent so much time making sure it was the perfect one for her, and as inappropriate as this sounds, I really am excited to see it. Nana deserves to be dignified in that cold ground with a lovely headstone on her birthday. It's really all we can give her, other than flowers. But trust me, there will be flowers. Lots of tear-stained flowers.
On a happier note, last Saturday I threw a graduation luau party for my bestie, Jen! I was trying to make it a surprise, but well, that didn't go over so well so I let her know at the last minute. It all worked out though and was so much fun. I am thrilled that she earned just enough gift money to cover her NCLEX fees! I was hesitant to throw her a party because of my health but all I could think of was how extra hard she worked for this degree, how huge an accomplishment this is for anyone, but moreso for her. She sacrificed everything to get to here, and she did it in 4 years and didn't give up once. I walked the journey with her and knew full well that she, of all people, needed to be honored. Plus, money was an issue with taking her NCLEX, and I wasn't about to let that happen. I figured if all of her friends gave a few bucks, she'd be well on her way to taking the licensure exam. And lastly, parties are just fun. Of course, the biggest reason here was honoring for her for her amazing drive and commitment and sacrifice though, so I talked with my mom and she agreed to help. She said we'd get catering and buy a cake, and my cousin Heather offered to help. A nurse at our church who knows Jen well offered to make food as well, and a few other friends pitched in. For the location, we were able to use (free of charge) the wonderful "clubhouse" at my Poppop's condo facility. Before long, we had a wonderful event coming together, and all of the pieces just fell into place. The party was a hit - everyone who came had fun, and I know for a fact that Jen was shocked and grateful and touched by what we were able to do for her. All of us are blessed to have amazing friends, and I love how we're always there for each other ... even when "being there" just means coming to have fun at a parrrr-tay! :)
On Tuesday, Jonathan and I went to the movies. 3rd time in a month or something, which is beyond a record for us. Before this run, we hardly ever went to movies! Anyways, I scored some advance passes to see "Orphan," and well, neither Jonathan nor I recommend it. It was slow and boring, predictable, and more of a thriller than a horror film. Oh well, screeners are always fun anyways, and who turns down a free movie?
You know what we did on Wednesday? Cleaned out his closet! We fought over a few things and had to do some item trades but overall, it went well and a lot of his out-of-style, have-way-too-many, and too-worn clothes are now being donated to our church yard sale. The Abercrombie & Fitch shirt from like 8 years ago is finally going away!! Fiancee is very excited about all of this. Here's the pile... And the run-down? 15 pairs of pants, 26 sweaters, 20 dress shirts, 15 tshirt, and 1 polo! Hooray!!
School started in full force on Monday. I'm in 3 online classes which are ending up being more like "busy-work classes." Since nursing isn't working out for me at the moment (but it will be... just not at this time), I'm working on Integrated Health Studies, and there's a few dumb classes I have to take to fulfill that - like Health, for example. It's my 5th year in college, Nursing major, and I have to take Health? Give me a break. Then the other 2 are Human Sexuality (it's actually more of a sociology class than anything) and Medical Sociology - 2 upper level classes. You have to have a certain number of "upper level classes" to graduate, and those were the only 2 that were online and applied to my major, so there you go. It's going to be a long 5 weeks!
Today I had Little M and the finger-cutting ordeal. I did have my first-ever chiropractor appointment, but I had to reschedule as I spent my appointment time going to the ER. It might have been a good thing I missed it though because my massotherapist did some intense fascial release on Tuesday and I'm still extremely sore from it. Tonight I have Baby L... my colicky screamer. Then Sunday I can breathe and Little M is going on vacation and my new nanny family (that I have yet to start with) is on vacation too, so Nanny gets a break!! (Aka, a few extra hours to do homework) Hooray! :)
Next week, lots of appointments, helping out at Shannon's VBC, a possible baseball game, then loads of babysitting over the weekend. Oh and school. Forgot about that. Blah.
But it's SATURDAY! No worries on Saturday! Happy Weekend & here's some funneh kittehs....
Jonathan sent me this next video... I told him the answer was NO!!
I like big words. They carry with them an opportunity to better claim a more distinctive thought, feeling, or thing.
In the medical world, though, the need to be more distinct, specific, and exact can be a blessing or a curse. It's good if you're a top-notch specialist needing to deeply articulate the intricacies of the human body, perhaps frustrating if you're a first-year med student trying to memorize even the shortest medical words. It's good if you're a patient wanting a doctor to knowledgeably navigate the convolutions of your heart, yet disappointing if you're wishing to get better and receive a troublesome test result in several verbose words. The longer the word, well, you get the idea.
My words of late have been both big phrases and big words. Patent ovale foramen. Primary sclerosing cholangitis. Thrombocytopenia. Chronic thrombosis. Innumerable esophageal, gastrohepatic ligament, peri-splenic varices. Massively dilated. Infarct. Splenomegaly with massive collaterals. Pulmonary arteriovenous malformations. Portal venous hypertension.
I'm going to vote for despising big words lately.
But you know, it's not just the big words. Some little words and certain small phrase shave enough power to silence an entire room.
Yes, sometimes silence is truly golden, especially when a record spins over and over and over with what should remain unthought of, unspoken.
Todaywas one of those days.
Yesterday was one of those days.
Everyday lately is just one of those days.
Two+ Weeks
Rewind to the other Tuesday, the day after Memorial Day. The worst day of my life, and not because I had a not-so-great visit with my liver specialist. After I met with Dr. Hupertz and we discussed my upcoming procedure and my progressing end-stage liver disease symptoms (like this new phase I'm in with waking up 2-3 times each night for a few hours each), something happened (I'll spare you details) that turned my entire world upside down. I spent Wednesday in bed unable to move. It was beyond terrible.
That Thursday I went up to Cleveland for an IV-contrast CT scan of my abdomen, typical liver test, no big deal. Well except the Barium - 2 huge bottles of that nasty chalky stuff. Okay, not that bad. Honestly, the results are always worse than the actual test. But I'll get to that later.
The weekend came and went, and Monday was Cardiologist Day. In part of my transplant workup, I had an abnormal EKG. The solution to that was a referral to go see my John Hopkins-trained, award-winning cardiologist at the Cleveland Clinic to check it out and hopefully give me cardiac clearance. I went and saw her a few weeks ago.
Good news came first... the EKG was nothing to worry about. The abnormality was with the T-wave, which represents the repolarization of the heart. A T-wave abnormality like mine usually indicates an issue with the body's metabolism and Ph levels. Many things can disrupt the body's metabolism (and thus Ph level) - from anxiety to serious diseases. Even though my previous EKGs were normal, Dr. Prieto said the reading was nonspecific, and the abnormality was so subtle that a cardiologist reading the EKG might not even pick it up.
The bad news, however, was the whole issue with cardiac clearance for the liver transplant workup. There were two problems, both diagnosed by agitated saline intravenous injections during echocardiograms ("echos") - pulmonary arteriovenous malformations (Pulmonary AVMs) and a patent foramen ovale (PFO).
First of all, I've known about my pulmonary AVMs for a few years now. Uncleansed blood normally goes from the pulmonary artery (right side of the heart) into the lungs to be filtered, and then it flows through the pulmonary vein back to the heart where it is then set off to supply the body with clean, oxygen-rich blood. In the case of PAVMs, or right-to-left shunting, tiny perforations surround the lungs' capillary beds, so uncleansed blood bypasses the gas-exchanging alveoli to go directly into the pulmonary vein (left side of the heart) without ever getting filtered. In short, blood doesn't get a chance to get its CO2 exchanged for O2 so toxinscirculate and cause fatigue and shortness of breath, among other possible symptoms.
Secondly, there is something called a patent foramen ovale (PFO), a defect in the atrial septum (the wall between the two atria, or upper chambers, of the heart) where instead of being a solid wall, there is a little flap. Everyone is born with a PFO, but as the person grows, they usually (75-80% of the time) close on their own. Even if they don't close, they're usually not problematic. However, there is a newly developing theory regarding transplant patients with PFOs. Scientists are seeming to think that somehow PFOs in transplant patients are directly correlated with IVC (inferior vena cava) thrombosis, which is related to prevalent strokes and other types of embolism. The theory also notes the commonly seen scenario of a thrombus (blood clot) forming in the right side of the heart, going through the PFO, and ending up in the left chambers of the heart where it can become an embolism, going out to the body. The thrombi alone aren't as much as a problem as is the possibility of embolism (the clot traveling until it plugs up another vessel). The ultimate embolism is the type that gets lodged in the vessels of the brain, directly causing a stroke.
Although we knew about the pulmonary AVMs, the doctors signing off on my previous contrast echos never mentioned a PFO. To be mostly certain I didn't have a PFO, Dr. Prieto suggested a new echo. If I had a PFO, she would do a heart cath to fix it. If we didn't find one, it was safe to assume I likely didn't have one.
So fast forward to last Monday.
Monday morning, I woke up and the sun was shining. Then I checked my email and saw a message from my specialist. The CT results from last Thursday were here.
Words. Lots of words. Big, huge words that meant bad, bad things, and tiny words that spoke for themselves.
Innumerable esophageal, gastrohepatic ligament, peri-splenic varices. Left renal vein is massively dialed. Spleen measures 21cm in length. Some splenic infarction (tissue death due to loss of blood supply). Cirrhosis. Portal hypertension. Portal vein thrombosis. Marked splenomegaly with massive collaterals. Spleno-renal shunt. Multiple large esophageal and paraesophageal varices. Portal venous hypertension.
As if that isn't a great way to start a week.
Anyways, next up on Monday was a trip to Cleveland to see Dr. Prieto again, this time for the echo. We did all the workup, the echo, the IV of agitated saline bubbles... thank goodness, there was no PFO.
Then I get a phone call. My transplant coordinator's scheduler saw that I was up at the Clinic that day and wanted me to come see her to coordinate our schedules so we could book the pre-transplant "people" appointments. You know... meeting the surgeon, anesthesiologist, social worker, infectious disease physician, psychiatrist, financial counselor... all kinds of excitement.
Needless to say, on Tuesday, major napping occurred.
Wednesday ... Cleveland again, surprise surprise. Back to the high-risk OBGYN to get a repeat test of a test her office "misplaced" (Not even kidding.) ... a test the transplant phase 1 requires. Anyhow, conveniently (ha) she also found out my newly-placed IUD (to prevent cancer, not babies.... long story) was "hiding" and wanted to do an ultrasound to make sure it was intact and where it was supposed to be, not perforating my uterus. Although at this point, something like that wouldn't really surprise me. Anyhow, she did the ultrasound and good news, the IUD was just hiding, no big deal. Then my doctor went silent, stepped back, and whispered, "Wow...." So of course, I wondered if that's was good or bad, and I asked what she saw. She said my ovaries were completely filled with developing eggs. She couldn't believe it either. Of course that did not make my day, seeing that she assured me during the last visit that there was no possible way I was in a state of health to carry a child and survive. Sure, part of me is relieved that I am capable of producing eggs - after all, with so many things wrong, I wouldn't be surprised if I suffered from infertility. However, each and every one of those precious, amazing things... the things my body produced (a job it can actually do right!) will never see the light of day. That's what hurts the most. Deeply.
That was pretty much the end of Wednesday as I didn't feel like doing anything else. On the way home - the way I've driven a million times before - I completely missed my highway exit and ended up 25 minutes from my house way across town. Exhaustion + being a basket case = seriously fun times. That night, Jonathan and I went to his sister's and chilled till we were both ready to fall over asleep. In the morning, on Thursday, my mom picked me up and so kindly drove me up to Cleveland again, this time for a series of ultrasounds, for the transplant workup and also just as regular observation for my liver disease. No big deal, just annoying I guess. I laid and watched The View while the tech about killed me with the transducer, but that's a different story... Just part of the job of being sick.
It was hurry-back afterwards since I had an appointment with my (amazing) therapist at 1pm in downtown Akron. I feel we really had a good session. We covered a lot of things, and it was great to get everything off of my chest. She can always see where I'm coming from, and she gently introduces new perspectives and ways of thinking about things. She's saved my life a zillion times just by keeping me from ending up in the ER with a panic attack.... like the good old days. (Thank God we're beyond that now...)
After therapy, I had a massotherapy appointment with a new massotherapist. It was my 2nd attempt to replace my current massotherapist, and as usual, to no avail. Thursday's massotherapist was amazing at finding the pressure points, but she didn't seem to know how to release them. I liked how she kept talking to a minimum and was very rhythmic in her technique, but after 1/2 hour, I was wishing it was over. If you're used to massotherapy, you know how you need the pressure points released, and without that, well, I felt like she was trying to kill me... slowly and painfully! I think I actually underestimated the "damage," as I was on muscle relaxers all weekend. So the search is on again....
Then came Friday. Although exhausted from a few weeks of non-stop appointments and overwhelmed by a long week, Friday was just another day in the week for me. More of the same. This time, a visit with my PA-C, Phyllis to check my thyroid since a test came back abnormal. She had her nurse call me to move me to a time where we would have more time to talk, and that we did! I love her, and we just sat and chat for about an hour. Life, health drama, whatever. She's so easy to talk to. Anyhow, she said the thyroid test wasn't really abnormal after all but had new labs done just to make sure, although unlikely. To that, I told her that I sort of wished I did have a thyroid problem causing my frustrating all-day, every-day extreme fatigue, because then maybe it would be treatable. But nope, she confirmed what I knew, it was more than likely just my liver making me so exhausted.
Then, while in her office waiting for the nurse to come draw the labs, I got a call from my transplant coordinator's manager. She told me my insurance had decided to deny coverage of a liver transplant since my MELD score was 9, and coverage starts around 10-11-12. At first I was frustrated because of all the tests I've gone through, obviously now in vain, but then I realized I should be thankful. And I am. I'm not bad enough to get a living-donor or deceased-donor yet. So, so thankful.
Here & Now
So that's been my life lately. Sprinkle a few "fun" things in, like Bryce's first T-ball game, his kindergarten graduation, and some new nanny job interviews, and that's been it.
And a little "news" for you... Due to irreconcilable differences, I sadly dropped my last nanny family (with Itty Bitty & Baby Itty Bitty) and interviewed last Saturday with a precious little 3-year-old, Little M. I got the job (which I soooo desperately wanted), and I start Monday. I'm so excited. Sometimes you just feel it when you find a perfect family to "join," and I know this is my match. I'm so ready to start - I have Pinkalicious and Fancy Nancy and a wagon for the zoo!!
Saturday (yesterday), Jonathan and I went to a wedding, and before that, I interviewed with the parents of a 7mo old little boy, Baby Blue. They need an as-needed sitter for a few outings a month, and I got that job as well. I start on Monday after I leave Little M's.
It's no wonder I'm exhausted, but I've found if you don't keep busy with non-hospital stuff, it's so easy to get into the patient-patient-patient mindset. I'm not sure if it's the healthiest thing to do, but it's working for me for the time being. Go, go, go, go, go. No time to sit at home and cry, you know? Plus my "kids" give me life, they truly do. They inspire me to keep going, to keep fighting, to see the world for what it is in the eyes of a child.
So what's up next? I'll be in the hospital on Tuesday (more on that later), so I have Tuesday and Wednesday off. Then I'll be with Little M for the rest of the week. I have 2 appointments this week, but they're "easy" ones. (Even though one is in Cleveland) It'll be nice to catch a breath, even if I'll be doing so while completely zoned out on anesthesia.
Everything is socomplicated. Simplicity is all I want right now. A break. A vacation. (And to think I just got home from one!!)
The Moral of the Story ... The Fact of the Matter
But you know who is not one of complexities, big words, and confusion? Our God. He's big and awesome and strong, and we are blessed that He holds our fragile hearts in His all-knowing, all-loving hands.
At the start he was there, he was there In the end, he’ll be there, he’ll be there
And After all our hands have wrought He forgives
Oh the Glory of it all is: he came here For the rescue of us all that we may live for the glory of it all for the glory of it all
All is lost find him there, find him there After night Dawn is there, Dawn is there
After all falls apart he repairs he repairs
Oh the Glory of it all is: he came here for the rescue of us all that we may live for the glory of it all
oOh he is here for redemption from the fall that we may live for the glory of it all oh the glory of it all the glory of it all oh the glory of it all
After night comes the light dawn is here dawn is here it’s a new day it’s a new day everything will change things will never be the same we will never be the same we will never be the same we will never be the same we will never be the same
Oh, The glory of it all is you came here for the rescue of us all that we may live for the glory of it all
Oh you are here with redemption for us all that we may live for the glory of it all for the glory of it all oh the glory of it all
It's catch up time on the blog! Lots of stuff going on, and Baby Itty Bitty is finally taking a nap. So here we go...
To update you on the drama at my school, here's an email we all got from the President of our university (lol):
An event intended to celebrate the end of the semester grew out of control this weekend. While the event was a private party and not a university-sponsored activity, obviously many Kent State students were involved. Today, university and community officials are exploring what happened and making plans to prevent an occurrence like this from happening in the future. We are grateful that no one was seriously injured during the incident. And while the events are disappointing, they only strengthen our efforts to work hand-in-hand with the city to aid in the growth of the greater Kent community as we strive to be responsible neighbors. We have enjoyed an outstanding level of town-gown cooperation in recent years, and our successful work will continue. The actions of those involved should not taint the wonderful work being done daily by diligent and committed Kent State students, faculty and staff. Unfortunately, lost is the news of the great accomplishments this weekend by our students. One example is the student-sponsored Relay for Life event that again raised thousands of dollars to help fight the scourge of cancer. Let's all learn what we can from these events and work to move forward together as a community. President Lester Lefton
There, now that makes everything all better doesn't it? Oh, and we also got yelled at in our weekly email from him, and we got a "safety email" today on "being safe" this weekend. Haha
Down in Nicaragua, there's probably a similar stack of letters with mine to Julenia buried inside. People tirelessly translate these from English to whatever language they need to be. Then when the children write their letters back, they translate those into English and forward them onto the children's sponsors. Isn't it amazing?
Next, let's see... Oh yes, the swine flu. It was just a joke but now it's a reality. As of this morning, there have been cases of Influenza A H1N1, a respiratory flu found in pigs that is now viable in humans, as seen in Arizona, California, Indiana, Kansas, Massachusetts, Michigan, Nevada, New York City, Ohio, South Carolina and Texas. So why do we care? Well I care because I have a myriad of chronic illnesses that make me susceptible to things like this. And many of my readers share my struggle and are in the at-risk population as well. 51 cases alone have presented in New York City. Why? How many people travel in and out of that city each day? Exactly. Then they travel to their home states and bring it to people there. Then those people go on vacation or go out to eat or go wherever and send the nice little swine flu to some others. So please people, cover your nose and mouth when you sneeze. Then throw the tissue away or wash your hands for goodness' sakes. Gross. Keep your hands away from your eyes, nose and mouth. Don't bite those fingernails and spare the pretty mascara by resisting to rub those eyes. No picking your nose either. Gross again. Because the person with swine flu sneezes on their hand, shakes yours, and then you yawn and touch your mouth. See how easy this is? But now if you have a cold, no need to worry either. To have H1N1, you'll likely have a temp over 100* as well as a cough or sore throat. You'll also have done one of the following: been in contact with someone with swine flu or someone who was in contact with someone having swine flu, traveled to an area affected by swine flu in the 7 days preceding symptom onset, been in contact (within 6 feet) with someone who traveled to an area affected by swine flu, or are hospitalized with influenza or pneumonia. So just be careful out there, chronic chicks. If you think you're coming down with it, call your doctor immediately. Oh, and obey the Feds and don't go to Mexico! But above all, don't be too stressed over it. Just use common sense. My dad spoke with family friend and world-renowned physician Dr. Alan Chow (who is a MD, PhD, OD and is cofounder of Optobionics, a company pioneering an implanted chip that make blind people see... not even kidding) and he confirmed what I had been suspecting... H1N1 is not a bad flu - it's just the flu, people. You'll be better in a couple of days. The only deaths have come from Mexicans and other people who likely cannot or did not access proper, current medical care in a timely manner. Immunocompromised people, be extremely careful just as if you were around any other bug. Get to the doctor if you show symptoms, and you should be all right. Healthy individuals? Same for you. Either way, utilize the health-smart tips above just like you would for any other bug. It's going to be just fine.
Wednesday beganBaby Time at the local library. I enrolled Baby Itty Bitty and invited our friends Russ and Sam to do the same with their Madison. So Wednesday morning for an hour, I sang goofy little songs, clapped and did motions, and held Baby Itty Bitty as she listened to the stories. (Okay, stared at other babies, etc. while the lady read the stories...) Until she decided not sleeping during morning naptime was a bad idea afterall and began to squirm and fuss. (Don't worry, "Itsy Bitsy Spider" cured the issue...) Meanwhile, Maddie spent the morning stealing the show and determinedly eating her pacifier and drooling all over the place. The next several Wednesday mornings should be fun for sure. Next week, we get a new room and will add toys, more interaction, and a "water table" to our stories and songs. Yay! :)
My parents just got back from Chicago and I'm jealous. But I shouldn't be because I'm leaving for Disney World on Tuesday! Although I'm stressed because there's so much to do and not enough time!
Craigslist and Freecycle ROCK. And thrift and consignment stores, too. Just saying. For the past few months, I've collected a desk, books, clothes, fabric, toys, Easter and Christmas decorations, crafts, a dollhouse, a TV/VCR combo, things to redecorate, Ikea bookcase doors, and so much more.. all for FREE! I've given away toys, clothes, a vacuum, baby stuff, etc., and I've gotten absolute steals on lots of baby gear (swings, DVDs, a BundleMe, a Bumbo and tray...) an Ikea bookcase, Cavs tickets, books, clothes, and I could go on forever. I've sold a chair, baby items, craft items, and even my printer combo. I have tons of pending sales, too, including my parents' old pool pump. Crazy or what? Maybe... but definitely fun!!
Still reading My Sister's Keeperand re-reading A Grief Observed. 2 amazing books. I absolutely cannot wait for My Sister's Keeper's movie to come out this June! (Even if it has a different ending...) I started the book a long time ago and didn't get a chance to finish it, so this is the perfect excuse to pick it up again. You should read it too - this book will move you and shake you to the core. I don't really think I'm biased just because I'm sick and I have a sister and I've lived glimpses of this family's lives. I think it would be unimaginable and hard for anyone, not just someone partially living the life. Can you imagine being created to be a genetic match for a cancer-ridden sister... so your cells and organs and tissues could in many ways cure her most of the times she got sick? Going to the hospital each time she had to? In the book/movie, the girl essentially decides to sue her parents for the rights to her own body... all while she loves her sister. Wrap your head around that one. And of course Jodi Picoult is a master author. So just read it. And check out the trailer:
Oh and I must give a shoutout to my nerdy fiance. Jonathan found this funny video by College Humor called Twitter in Real Life. If you're into Twitter, you'll totally get this... it made me "lol" :)
Speaking of Twitter... you so should be following me....
K, so Grey's Anatomy last night??? Episode 99 was one of the best in a long time! And I'm so, so excited for Episode 100 - if you want a spoiler, click here. Shonda Rimes confirmed that Denny will definitely be in the episode, and she also added, "Just a reminder: He's not a ghost, and we should all remember what his appearance means." Interpret that one how you will... either Izzie's mets are back making her nuts, or well... he's come to take her... they will finally be together. But back to last night. Krista Vernoff came back to write and the scenes with Izzie and her mom, Meredith and little Maddy, Meredith and Richard... well, there were lots of amazing scenes. Even though lately Grey's has deviated from episodes with obviously resonating themes, throughout this episode, a few ideas were repeatedly apparent: acceptance, forgiveness, and making amends. I loved how Meredith risked her job to tell Maddy's mom, "You have to change her story while you still have a chance... for her, but for your little girl, you have to change her story." The whole idea of a little girl shooting her dad 17 times to save her mom from her dad, now that's controversial. For standing up for a 6 year old murderer, now that's Meredith Grey. I love how Meredith is all "dark and twisty," you never know where she's going next or how she's going to react. She's not afraid to surprise people, and she's not afraid to run or hide when it's the best thing she can do. I can relate to Meredith. But anyways, change their stories... Hindsight is 20/20 but I know my story could have been changed, and maybe yours could have been, too. Instead of letting that realization hurt (I'd never in my life thought of it that way), embrace the realization that all adults change the stories of each and every child they ever get to know, and you have the power to give a child a happier ending, a brighter beginning.
Oh and any Private Practicewatchers reading? How about that season finale?! I knew it from the time I saw that psychotic woman appear back on the episode... Chills!
Last Monday, January 19, my Nana (my mom's mother) had a heart attack. My parents flew down to Florida the next day, and I told them I was most definitely going as well, but I had just gotten over the flu, had just started steroids for massive tonsillitis, and was dealing with the fibromyalgia. I decided I'd wait until they scoped out the situation, and if Nana's condition became critical, I'd fly down.
Mom and Dad arrived to lend help to Poppop, be there for Nana, and make sure everything was going smoothly. Surprisingly enough, as the week went on, they discovered that the doctors were not very concerned about her heart. The cardiologist said if it was his mother in that condition, he wouldn't go through with a heart catherization. That was very encouraging to us, and we were ready to watch her get well enough to go home. By the end of the week, she was doing much better, or so we thought. The pulmonologists were quite worried about her lungs. Nana had smoked for over half a century and was actually becoming pretty dependent on her oxygen during the few preceding weeks. Of course, the doctors' diagnoses of COPD and emphysema were not surprising, but they were troubling.
Since I'm here in Ohio and my parents are in Florida, I'm not comfortably positive with what is going on from a medical standpoint, but from what I gathered from speaking with my parents and can assume going by my medical knowledge, here is what I believe happened...
The pulmonologists' suggestion was (what I believe to be) a therapeutic bronchoscopy. However, Nana being on DNR status meant they would only complete the procedure if she would waive her signature. They said there was no way she'd make it through it without needing resuscitated or intubated. Nana declined the procedure, and I'm not sure if it was due to her dementia or she simply didn't want it, but either way, her lungs were not doing well.
We thought she was getting better though - good enough to be discharged at least - and we hoped that she would be fine, just having to keep living with her oxygen as she had been doing before. I was excited that she was getting well.
Here at home, I was keeping things in order as best I could, and Nikki was in and out from college and softball practice, and Heather (my mom's brother's daughter) spent a few days over here, too. And of course, the boyfriends were here as well.... ;-) It really is awesome to have such a strong support system, and I have received so many calls from concerned friends and family members who offer what I know is genuine help if I ever need anything. (Thank you to ALL of you.)
Saturday night, I decided I needed to get away so I spent the night at Jonathan's sister's house. Nikki "babysat" Haylie and Riley and I was enjoying being away from it all until Sunday morning when I got a phone call.
[Caller ID says Mom!]
"Hey Mom!"
[pause]
"Amanda..."
"Mom, what is it? Talk to me."
[long pause]
"Amanda..."
"MOM, TELL ME!!"
[pause]
"Here's Dad..."
I knew something was wrong. I knew the second she paused before she talked that something was wrong. I couldn't force the words out of her, and having to talk to Dad about something because Mom can't? That's not my mom.
"Amanda, your Nana took a turn for the worse." "What happened?" "Overnight, she got bad." "Dad, I'm 21 - I can handle it. Just tell me."
And then I found out. Something happened and now she was barely hanging on. The doctor gave her hours to live. I was determined that my Nana was not going to die without me, her "Mandy Mine." She just wasn't. I told Dad I was flying down, and he said to wait until he knew more.
All the flights I found at that point in the day were not one-way. The earliest I could get there would be 11pm, and then there would be a 2 hour drive. Would Nana hang on that long?
I wanted her to hang on for me. I knew Nana would hold on for me. I told Mom that if she knew I was coming, Nana would wait. I was her "Mandy Mine," remember?
But then broken Mom told me words that my it's-time-to-cope, let's-get-organized, it's-go-time, still-in-shock mind was not ready to hear.
"Amanda, honey, she's in pain. She's suffering. Your Nana is suffering."
I cracked.
Mom told me what her CO2 levels were because Mom just knows how to get through to me, and telling me some science is sometimes a good way to give me some reality. Mom said she was suffocating, and the doctors were ready to remove her oxygen and give her medication to ease her pain.
Grief does funny things to people. My reply? "Keep the oxygen on, and give her meds. She'll be comfortable then, and she'll wait for me, I know she will!"
I persisted and persisted until the words "suffering" and "suffocating" actually got through to my mind. I was not going to let her be in pain, no, not one bit. That's not love.
Back to the flight, I wrestled back and forth since death is so unpredictable, but I decided if the doctors were right, I would arrive too late anyhow, so I did not book any arrangements.
Soon after, Nana woke from her state of unconsciousness for a minute, and I am so grateful in my heart that I got to talk to her. I tried to be strong because I knew it would absolutely break her to hear her Amanda hurting, but I couldn't hold back the tears. "Nana," I said, "It's Amanda." I said it again to make sure she heard me. Mom told me she moved her hand. I told Nana I wanted to be with her and I loved her so very much. It's all I knew to say.
Jonathan left me last night once I was asleep. The pain of this is starting to wear on my health already, so I've been taking steady doses of my nerve medications before I end up in the hospital. I slept with my phone on the loudest setting in my hand, and I stayed in bed most of the morning, talking to my parents on and off. When I did get up, I found he had left me a note on my desk. Just a few words, but it's things like this that remind me what a fabulous guy I have to help me get through no matter what could ever happen.
And then, my deepest fear w as relieved this morning when Nana gave her heart to Jesus.
My mom's two brothers arrived late this morning, and now we are just sitting and waiting.
Death, like I said, is a funny thing. There's no point in trying to predict it or figure it out. Same with grief. But seeing my grandfather pass away a few years ago and knowing what I know from a fabulous professor with years of hospice nursing experience, the dying are fortresses of strength and resolve. People can come out of comas, apologize or say a word, and then take their last breath. It's not uncommon for the dying to hang on weeks longer than science would suggest if they are waiting for one last person to "say goodbye" to. I know this, and I believe these stories with all of my heart, and I do fear that Nana is waiting on me. She loved her three children and three grandchildren, but for some reason, Nana and I had an extra special bond. It was just different. A little deeper maybe... I'm not sure. We just "got" each other. When she started dealing with a little bit of dementia, she could be going absolutely crazy and would instantly calm down if I'd come into the room. I was the only one who could get her to settle down in her most upset state, and even during the aftermath of Hurricane Charley in 2004, I never left her side.
Ever since she knew I was on my way to this earth, we've had something special in common. I'm not sure what exactly, but our bond - even though separated by hundreds of miles for so many years - is one of the deepest in my heart.
Nana was an artist, and so was her mother. I definitely got a heaping dose of the genes, and we shared so many art forms in common. She raved to anyone who will listen how she sat me down at a sewing machine at the age of 2, "And would you believe, that little Amanda sewed the straightest line I've ever seen!" or, during my visit down a few years ago, "Never in all my years have I seen someone pick up knitting so fast!" Nana taught me how to sew, paint, draw, knit, crochet (well, I did fail miserably at that one...), and so much more. She lived in Florida for all of my life, but just a few years ago, they bought a condo up here in Ohio where they spend May-October. I was just telling Jonathan last night, so many miles separated us and sometimes we wouldn't see each other for a year at a time, but no one would ever know that if they saw us together. We were just like that.
When we'd go down to Florida, Nana & Poppop would take us around town and show us to all of their friends. Nana kept a big "craft drawer" for me, and I adored finding new treasures in there. I'd sit on the patio or on the floor and make all kinds of "art."
Nana slept in every day, and I remember being a tiny little girl sliding open her bedroom glass door soooo quietly, tip to-ing in, and grabbing the set of Barbie crafts she kept for me right beside her dresser... the side of the dresser that held an aged, colorless portrait of a beautiful woman in a wedding gown. I could stare at that for hours. I couldn't believe that was my Nana! She was so beautiful, just like a princess.
Nana worked patiently with me to teach me the family lines and stories. I spent a bunch of time at their house in Florida labeling all of her and Poppop's photos with dates and names, and I tried my absolute hardest to record every detail of her stories that I could. She had a fascinating, full life, and I think part of our bond was from our commonalities. Like me, she was always driven. She always had to be doing something, starting a new project, accomplishing something big. Both of us share unending compassion, and I would get so happy when she'd tip certain waitresses just a little too much because, she'd tell me, "They have families to raise, honey." Like Nana, I have no problem wearing myself ragged to help someone in need. We both love beautiful things and appreciate even the smallest wonders of life.
Nana wasn't supposed to make it through the night, but this morning, she's still here. Her daughter and two sons are there, and her husband is there. Her son in law is there. Everyone is there except for her granddaughters, me, my sister, and Heather.
She knows she's loved, we've all said our goodbyes, but she is still suffering there.I have one fear on my heart - just one. I say this so, so unselfishly, but if Nana is waiting for anyone, it's me.
Just an hour or two ago, I asked my mom to talk to her one more time. I told my Nana how much I loved her, and then I said words that I never imagined would be so hard to let out. "Nana, it's okay. It's okay Nana, you can go home now."
I hope that's enough. I hope she believes me. If she's still here tomorrow, I'm going down. It's where my heart needs to be, but I have to be sensible about my physical state right now as well. I am content in my heart about our goodbyes, and I know she is going to be with Jesus, but still, there is that one fear that she might be waiting for me even though I did tell her goodbye. I just can't stand her suffering. The picture in my mind just shakes my soul so badly and I want to blink it away, but the other part of me just longs to be holding her hand as she goes. I always thought I'd be with her for this. Always.
But the again, I never thought it would be now. I only remember Nana blatantly speaking of her death one time. It was this past summer, or maybe the one before, and I looked at her and firmly said, "No, Nana, don't talk like that." She said how she's tired and has lived a long life, and I said, "Don't you want to see me get married? Don't you want to see your great-grandbabies?" That changed her mind. I didn't care what happened, I just knew I wanted my Nana to see me walk down the aisle to Jonathan, a guy she actually thought was almost good enough for me (Her words - not mine! But from Nana, that's a HUGE compliment!), and I hate that her mother died 3 months before I was born, so I knew Nana would have to live to see my babies. She would be so proud, and I know she'd make them little sweaters and sing them the songs she used to sing to me. I can picture her holding their hands and reading them books... just like she did to her little Mandy Mine.
But that will never come to pass, and my heart is shattered into a million pieces.
I just miss her beyond any words I could ever express.
I am 22 & currently spend my days nannying my itty bitties + going to college (working on my nursing degree, goal: pediatric oncology) & am honored to be a published writer in a nursing anthology & a contributor to many scrapbooking publications. i love hanging with my amazing friends, sister & family. i love my baby puppy haylie brooke and our silly doggie ri-ri. in my rare spare time, i read & get crafty. i thrive on organization, my mac repertoire, learning & absolute fabulosity. my favorite place in the world is paris. my favorite color is pink. i love being a nurse & i believe each one of my patients is precious. i'm a night owl & wish my lifestyle promoted such habits. i like lazy jammie days. i believe in god and am thankful for his hand on my life. i believe that life is too short to be anything but happy, & i’m thankful that a chronic liver disease + the effects of a car accident have taught me important values that most people learn far too late. i hope that the world will find hope, and my idea of a good day is one in which i made someone smile :)
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Last week, we started the week by celebrating Bryce's seventh(!!!) birthday at Applebees. He and his brother both are practically my size! I told him I remember the day he was born. Talk about feeling old. He was so excited to get lots of outfits and lots of Nintendo DS games. :)
That Thursday I went up to Cleveland for an IV-contrast CT scan of my abdomen, typical liver test, no big deal. Well except the Barium - 2 huge bottles of that nasty chalky stuff. Okay, not that bad. Honestly, the results are always worse than the actual test. But I'll get to that later.
As if that isn't a great way to start a week.
Wednesday ... Cleveland again, surprise surprise. Back to the 
So that's been my life lately. Sprinkle a few "fun" things in, like Bryce's first T-ball game, his kindergarten graduation, and some new nanny job interviews, and that's been it. 
