i want to be positive here

I have friends who think I'm a positive influence, and that I bring joy to their lives.

Why does that statement not make ANY sense to me? I'm sorry I've been such a negative person lately. Its just this latest tragedy compounds my freaking life. I mean, yeah, I'm in grief etc about my kidneys but someone I care about is not coming back and I just can't put that aside.

I've had a LOT of friends pass away, but only a handful have left such a profound mark on me. This one hurts considerably, and its like I can't get away from it. I tried being away from the internet for a few days. That didn't really pan out very well. I kept getting texts like "oh did you get that email I sent you" which turns into going onto facebook, twitter, etc. Then its dailylocal. I HATE YOU DAILYLOCAL and your horrible reporting skills, and your faceless twits that comment on your site.

When walking away from the service, we passed a newspaper jawn (for lack of better verbiage... KIOSK?!) anyway, one of the gentlemen I was with paused to look at it, while another said "Don't look brother, its just a trap." Which it is. Really.

And I'm really not saying that I'm a literary genius at all (hence using the word "jawn" every day, but I think thats more of a thing thats said in one of my groups, so yeah. whatever.), but the reporting is so sloppy, facts get skewed, the reporting seems to also have a slant/bias. So, unless its an obit, I'm not reading dailylocal anymore.

See, this is me trying to be positive... Well ok, I'll actually start here. New beginning.

Meghan's stroke was 3 years ago on next Wednesday. Sunday was 3 years that she went into the ER at AI with a stomach virus. (ugh, I think I just quoted a Smashing Pumpkins song. Slap me, k? thusly deleted) SO in that 3 years, we have had our ups and downs. But! I have a strong, amazing, pretty freaking independent, 4 year old (who is almost 5). And a 6 year old, who is also strong and amazing, in his own ways. He is so sweet and loves his momma (not that Meghan doesn't, obviously. Just that he's in Pittsburgh this weekend, I miss him and his sweet big hug before he left was awesome)
Even with the cards stacked against us, I guess we've pretty much triumphed? I mean, kidney failure isn't really a triumph, but I'm doing critical care at home, and even a lot of nurses don't know that you can do home hemo.

Speaking of, I got told by my nurse and doctor yesterday because I don't fax in my flow sheets after every treatment. something to the tune of "If you can't adhere to our facility's rules blablabla" yeah, woops. Going in center was discussed. No. Not happening. I hardly have the time to do it on my own time, let alone do it on someone elses.

Also, my hemoglobin is 13.8. thats high. I have to lay off the Epogen for awhile. Phosphorus was 5.7, but my potassium was not even mentioned. Hooray for dialyzing the night before clinic (Davita lab lost my blood somehow? idk what happened. its funny though, I was scrambling looking for tubes, I actually had to go to a lab to see if i could "buy" some tubes.) My calciums low, my PTH is high in accordance. I'm already on calcium and even tums. UGH

ok time to end this, i'm on dialysis and light headed...don't like this feeling =\

This week SUCKED

And its not even over yet.

I'm not going to get into too many specifics, because if you know me, you probably know why (if you follow my twitter, you definitely do). I don't update facebook, but I read it, and comment. A lot. LOL

Anyway, so bad news on Monday, then Sean had a Medcheck and a resident in the building set off the fire alarm. Ugh. Patrick then went to the doctor, and I found out one of my favorite people in the world works at his doctors office now. So, that made me happy. OHHHH YEAH so Um, Pat's back gave out last week, and he went to the ER on Friday night. That was pointless. He can hardly walk. He's on a cane. Has a girdle. Got a cortisone shot that meant nothing apparently.

Fighting with financials right now. I'm on an extreme Money DIET. trying to trim that fat. I'm waiting on getting Social Security all figured out as soon as possible. I have to get my paystubs from July 2010-Jan 2011. Usually I keep them. I can't find them because... MY PURSE WAS STOLEN TWO MONTHS AGO. So annoyed. I thought I took them out of the little pocket of my wallet. wahhh

Got a letter thats trying to say that I didn't send in information about the kids for insurance, so they were going to try to cut that off. We can't have that happen.

BUT! This week has also been very productive, Sean's MT came out on Tuesday and helped me go through all his toys and helped with the parting process. Pat's dad came by and took FIVE boxes of toys to Goodwill last night. Today, she came over and we went through all his clothes. So now I have a huge bag of clothes that I'd give to my next door neighbor if she didn't move :P If nobody claims them, I may just take them to her parents, who still lives next door.

Um, I still hate dialysis. I broke the fax machine somehow. GO ME! So now I can't be yelled at about flowsheets until June 30th when I have clinic LOL I'm going to ask my nurse if I can go in on Monday and have a treatment there and then have my blood draws there as well. What else... Eh, I guess nothing. Today, I picked Meghan up from camp, and its so pretty there. I just hate having to travel through the true twin tunnels to get there. I have never been through them before. My mom had no idea of the stories of them, but they're kind of infamous. I've only lived here for... 23 years or something.

Oh, and whenever someone in Darby gets shot, I freak out because I'm afraid that either someone in my biofamily did it, or they were the ones getting shot. It was on the news... I need to write a book, but I can't ever have a real cohesive thought.

See, because I'm going off on another tangent. I got a few eye dusts from exposed organics in the mail yesterday and I'm in love! :D YAY local makeup

And my friend got really good news and that makes me happy for them. Ok, I'm off!

Friend Makin' Monday from @ashallann

Its still Monday in California, where I have a LOT of friends. so this still counts as monday!

FMM: Yes or No?

• Do you use coupons? No, but I really wish I had the time and motivation to do so. I am so nitpicky with my groceries and such, i am brand loyal (aka a dietcokehead)
• Do you like football? I can't exactly say no. but I can't in good faith say YES (resoundingly! lol) I can follow it, and if a game is on, I'll get into it. I get the concept. Before I got sick, I knew stats and all of that, probably good enough to play ff, but... I'm too lazy?
• Are you in a relationship? mmmhmmm oh so crazy in love. LOL
• Is your phone always within arm’s reach? Generally. Unless it falls out of my pocketbook in my father in laws truck when taking Patrick to the ER. But I keep it around to keep the kids content as well. Sean is obsessed with Angry Birds.
• Do you like thunderstorms? Unless they're the type that make my house flood, I don't mind them.
• Can you cook? Yes, but do I? not as much as I'd like to. I love my le creuset, but I can't carry it because its too heavy. Dammit.
• Are you – or have you – lost weight? I've basically been the same weight minus when I was pregnant or on prednisone. but I've always been about 47kg, or 100 pounds. I'm retaining water right now because of end stage renal failure so I am like 51kg, but my "dry weight" is literally now 47.5, and I'm not happy with that. I want it to be back to 45.7 like it was when I started.
• Do you know how to read a map? Yes, but I prefer GPS or google maps.
• Do you wear makeup? When my handbag was stolen.... most of my claim was makeup/brushes. about $800 worth. MAC addict. Haven't recouped everything because we are broke right now. and I am sad. I have my essentials though. I'm now on a makeup forever kick anyway. I neeeeeeeed their HD Primer and Foundation. Then I'd have like 5 foundations LOL (one i product tested for cover girl, MAC, Estee Lauder, Smashbox, and Chanel)
• Do you read regularly? I haven't been reading books lately. But I read blogs. and twitter! fast paced life!
• Are you publicly affectionate? Not really so much, but I'm cool with it. I used to be, so I don't hate on people who are. aww wahh. I miss those days.
• Do you like picnics? I don’t think I’ve ever been on a picnic, I probably wouldn't though. I'm trying to think of some type of scenario that I WOULD like them. No. Nevermind. I hate the outside. Oh wait, does lunch on the beach count? my in laws do that and I was a part of that. I do not like picnics on the beach. Or anything on the beach all that much.
• Do you have a/c? Central air ALWAYS
• Have you ever been out of the country? Yes, but not too far away from it. I was going to move to Australia, but um, I cashed in my plane ticket to get married.
• Do you know how to ride a bicycle? They say you never truly forget, but I'm the exception to every rule. So um. I'm gonna go with a no. It would be the death of me. As I may have said earlier, I hate the outdoors. I am an indoor chick.

This was fun :D I am going to do it again!!! I used to do this on livejournal all the time haha

Next Ranty Post soon, I promise

But for now,

I’m posting this to enter a contest offered by Buy More Contacts at Uppercase Woman! I want to win theiPad 2! Enter to win here!

:D an iPad2 would make my life complete! LOL

Regret

I love Samiam. I also love the song Capsized, but this is just seriously matching my mood right now.

Usually, aka before the surgery, on a day like today, I would just lock myself in my room and play my guitar and write some sobby music that I'd eventually forget (unless it had a really catchy hook) and be over it. Now, I just put two needles in my arm, and somehow the diseased blood is supposed to leave my body and come back all squeaky and clean.
That should be a really awesome metaphor, somehow, it misses the mark.

Anyway, so I had a down day. I'm having some down times. I owe Kim some blood work. Its going to come back crappy because I'm not eating as well as I should be. Especially since the Strawberry Festival was over the weekend. Potassium is a killer, y'all. Boo. Anyway, then there was the apparently infamous (because people are talking about it? wtf. Phoenixville? you and me are done professionally. please keep my name out of your mouth) Saturday night where I mixed some pinnacle whipped cream vodka with some premixed mango margarita crap because Heather did it and she said it tasted good. I HAD NO CLUE it had tequila in it. AND Mangoes are like, one of those top 15 foods that dialysis patients should avoid. Potassium, once again a KILLER. So yesterday was kinda a wash, I just layed around, watched tv with the kids, feeling like crap. Should have dialyzed, but didn't because it was my day off and I didn't feel like sticking myself.
God, I think I'm going to just do my EPO subcutaneously. I keep saying this, but I think I'm having an anemia problem. This is why my brain is not working quickly.
Anyway, back to the playing guitar. My dexterity is screwed up from the surgery. Thank god I'm not some like, renowned surgeon or anyone of any importance (that would use my left arm for anything) because CAREER ENDING. I mean, now i'll never be a late blooming rock star (BTW, while making a brady bunch joke, Christopher Knight and Adrianne Curry Broke up. Did ya hear about that???) So, my plans of world, chart topping domination, are thusly thwarted.
My split EP with ex Palecurve now Dead Rock Stars is shelved. Dammit. and it was going to be themed.

I guess its for the best, anyway. Wouldn't want Julie to get too used to mass adulation bahahahaha

tangents vs stream of conciousness

I know that I talk. A lot. I can be shy, I can be reserved. I have been (Have you seen me act like this? you should take a picture and remind me)
Now, this is in part sparked by a conversation I had with the one we call White Jawn aka Brian the other night at the awesome party my friend had for the rapture. Anyway, he said that I'm the person who always wants to be friends with everyone, I want to know everything about everyone, and I want to help everyone (And yes, its true I once said "All this place needs is a can of paint and some sunshine when talking about Chester. for my non chesco/montco/delco readers who don't know what Chester is, take what you think about the worst neighborhood in Philadelphia and multiply by 10 or so) Now that we've laid down those tracks, and you know that I'm a naive...crazy person? I don't know. But anyway, then later in the week, Patrick (my lovely husband) told me that I wear my heart on my sleeve with friendships. And I totally see that. I don't know what in my subconcious wills me to do so, but I do.
Hooray for faults!
But back to the engaging. You know how theres a going trend in movies these days where theres a cute, quirky girl that immediately seems fascinating (usually played by the likes of Zooey Deschanel. damn those doe eyes.) or at least appears to be, then you get to the thick of it you find out this girl just has no god damn filter.
Yes. That is me.
Now I've REALLY been biting my tongue about one subject because I know I'll be the one to get hurt, and I can't get myself all involved in other peoples business. (I just know that the business is trouble. OMG Julie, just stop being such a CASSANDRA!!! its just what I do.)
But anyway, so its totally true that when I start into a friendship, I jump in with both feet. And I think that scares people. I've really been working on this. Dammit, why am I so socially awkward? Its not nurture or nature, its nature vs nurture, and its a deathmatch.
That was my whole intent, other than for medical issues (Look where that got me) that I ever went on my excursion to find my biofamily (oh, and I got them. in spades.)
But its so easy to get immersed into any of their drama. And its so difficult to just give up on people, because i really try to see their good sides, et al. Buttttttttt As everyone says People don't really change, they just manipulate the picture you're looking at. (People don't really say that. at least I don't think they do? If they do then shit, props where its due)

oh, and I procrastinate a lot. I'm going to do this here. Maybe until tomrrow when I'm going to be on dialysis for 3+ hours and have nothing to do but be pensive.
Also, the new prescription 4 days a week? Has made me really an emotional wreck. Dear benzos, please keep my anxiety at a tolerable level, that is what you are made to do. peas, thank you, and mucho amore, jules xo

Dialysis Day 3 Video

Because I'm vain. but Dialysis kinda sucks y'all. I just had a bad day because my access (graft) is really narrow and I'm using a larger gauge needle. And I'm having transportation issues.

I want to go to sleep. I have 26 minutes left on the machine, but then another 45 minutes or so of breaking down, cleaning, holding down gauze so I don't bleed out.

I guess I should feel good because a resident or fellow or something looked at my chart and didn't believe I am how old I am because I look so young. IDK, that goes back and forth.

Next Chapter.... feeling better. Soon. Hopefully.

PS Ashleigh is so sweet, she sent me a vase of flowers. I haven't seen them yet. Can't wait to get home to see them <3

taken straight from comments. update on Meghan

Well, yesterday, Meghan and I both woke up with a queasy tummy, but I took Zofran as to keep myself from vomiting. She did vomit, but was completely happy otherwise. I mean, we've had so many GI problems with her, it wasn't surprising, you know?
So, I went to lunch with a group of friends, after lunch we were going to the mall, en route, my friend had to pull over because I lost my lunch... (When we got to the mall, I went straight to the maternity store to get these things called preggie pops to try to calm my stomach, seriously)
So, we're at the mall for awhile, and I get a frantic call from my mom "COME HOME NOW MEGHANS SEIZING" and she hung up. I was freaking out, so my friend pulled extreme die hard moves to get me to our local hospital (chester county) from king of prussia. I was dropped off even before the ambulance had arrived. (My mom works in that ER and her coworker didn't even recognize me, I was freaking out that bad)

She spiked a fever *out of nowhere* she was up and playing one minute, and then all of a sudden she began seizing. The first seizure went on for about 10-15 minutes. She came too right around the time the EMTs arrived.
Pat rode in the ambulance with her, and she began to seize again en route. They pushed 2mg Ativan, she was OUT. When we saw her at Chester County, you could tell she was post ichtal, plus the Ativan (that amount for such a small child did honestly freak me out. I'm prescribed .5 PRN for when I have crazy doctor appointments and just life in general...

Her CT of her head and her chest x-ray were clear. She wasn't responding (probably because of the Ativan), so they were talking about doing an LP (i hate the phrase spinal tap...), but she then groggily asked for the cartoon network.

They took her to Childrens in Philly, she was immediately put onto the service of Neurology. The stroke clinic Neurologist, Dr Ichord (Meghans personal Neurologist), just happens to be at a symposium out in San Francisco or somewhere out there)
Doctors ordered an EEG today, but we haven't seen/heard anything about results.

(I'm going to write about what else we saw the passed couple days in another comment, btw, I'm afraid its going to cut me off)

Today she was having issues with being wobbly when walking, her eyelids were "heavy" (one was "drooping" more than the other), she was having issues walking (verbalized she was dizzy), and she is talking out of one side of her mouth. If you look at the picture I posted, you'll see we were having trouble getting her to create a smile that was bilateral.
And you've seen Meghan outside of the hospital. She is ALWAYS smiling.
She also was somewhat cranky, she was saying she felt better, but then also complained her knee and ankle hurt.
She has an MRI in the AM, I'm hoping its clear, but I want answers. Seriously, doctors seem to look at my kid and throw their arms up in the air, or they are so so quizzical about everything for their own sake.
Another thing, she wears an allergy bracelet, She gets the WORST rashes (not just hives, but blisters up). I told them this, its well documented.
I wasn't there when they were doing the IV. They told Pat that it was hypoallergenic tape. Nope. Fail. Exactly what she's allergic to. I asked for Hy-tape, 3M micropore, or 3M tegaderm. I have the same issues, so I know what to do, you know?
I can't sleep at the hospital because my arm is in SO much pain from the surgery. There is no way I can sleep in a chair/on a couch.
I actually asked if they'd ruled out meningitis, and they tapdanced the issue. Patrick says "they" (any medical personnel) tapdance around all of the issues. I feel like we've gotten straight forward answers. Which are all pretty much still "we don't know" right now, but its actually a better situation than while she was at AI because they just kept naming it different things. and by there THEY means residents. They all seem to be terrified of the attending, but want to suck up and get the best differential diagnosis.
So so so frustrating.



precursor aka, earlier this week...

So, on Tuesday night, Meghan was walking around our living room like normal, when her left leg gave out. I wrote a note to her teacher/ physical therapist. She wrote back, saying that she'd noticed left sided weakness of both the arm and leg for a couple weeks (wish I would have noticed that sooner)
I was at Penn all day Wednesday because I saw my vascular surgeon and nephrologist. (Graft is good to go, just have to get the OK from the insurance company to start training for dialysis)
Anyway, because of these two things, I took her to her regular pediatrician, Dr Faber, on Thursday. He loves her, and she loves him. He is in such awe about how well she has bounced back from the stroke.
He said that her weakness was inconsistent, and couldn't tell if she was just being silly. He was concerned that she may have suffered a TIA (transient ischemic attack. aka: mini stroke), so I guess we'll find out from the MRI tomorrow.
*sigh* that was a lot of information and thats emotionally exhausting.
We see the stroke clinic on 3/11. I would really love to see if we can get a PT do a visit to Meghan before the MRI... I have to remember to ask them if thats possible.
Maybe I'll have Pat write that on the board...