update-diddy-do-da

I've been trying to write a decent blog post for over a month, but nothing seems to come out when I sit in front of the computer. It's quite frustrating. I feel like I have so much to say, so much to talk about, but nothing comes out. It's weird.

I'm doing my monthly IVIG treatment right now. It took them 3 tries to find a vein this time. I just keep telling myself, only two more after this one. Then I get to meet with my Neurologist in December to discuss my future. I truly hope that these treatments will be done after that. I just want to be cured. I hate having to come here for a 7-hour treatment of the most expensive medication ever, next to Chemo. I hate that I have to pay hundreds of dollars every month for my health insurance so that these expensive treatments are covered. My family could be on our own feasibly if the money wasn't being spent on over-priced health insurance.

They always have a hard time finding a vein on me. My veins are practically non-existent, they say. Even the veteran nurse who's been doing this for 20+ years said that she's never seen someone so young with such poor veins. I think I'm dehydrated despite drinking plenty of water. Pretty sure I couldn't drink enough water to do anything. Plus, having to pee every half hour is annoying. I don't have time for that.

I do appreciate my treatment day each month though. I get some free time to myself, I can browse Pinterest all day if I want to, the nurses are so nice to me, I could nap all day if I wanted to. It's the little things, right?

Anyways, so how many of you are watching the new fall TV shows? Some of them are pretty great! Pan Am might be my favorite so far. I just love that time period, The 1960's. The style, the elegance, the grace. My main beef with that time period is how women were treated, like they were significantly worth less than men. Just eye candy and baby making machines and cooks. Ack. But the clothes and hair and makeup, just love it.

I'm also into Prime Suspect with Maria Bello. I don't know why, but I've always enjoyed her cocky hard-ass attitude. She's a guys gal, I dig it.

I've also been watching The Playboy Club, which I thought was going to suck, but is actually pretty decent so far.

One show I'm always interested in watching is What Would You Do? on ABC. I think that show is so funny and sometimes infuriating, but also can help you keep your faith in the human race or lose it, depending on the situation. Watching how people react in tough situations is very interesting, seeing what can push people over the edge of what's appropriate and what's not. It makes me more conscious of situations that happen in public and how I should stand up for people more often. I think people should do that, help each other out more, stand up for each other, for what's right. I think there'd be a lot less hate in the world if people could do that.

Last night Hubby, Penny and I went to a new restaurant in town, The Wooden Spoon, to celebrate our 7 year. It's a rustic, expensive Panera Bread, essentially. It was good, but holy crap, their Signature Mac n Cheese (mac n cheese with spinach and bacon) tore my stomach apart. SO oily and WAY too rich. Next time I'm going to try a salad or sandwich, because that Mac n Cheese, well, it was a hot mess. A hot tasty bacon-y mess, but good god, never again. I did love the decor and general feel of the restaurant though. It's small, locally owned and they even use Mason Jars as their glasses. It made me want to get some Mason Jars for our home someday. Just gave it a home-y comfortable feeling.

I've been looking into going back to school recently. I really have no idea how I'd do it, but I want to finish my teaching certificate so badly! I don't think it'll happen anytime soon though, timing just isn't right.

Yesterday we put Penny's lady bug costume on her to see how it fits. It pretty much fits her, the hood part is a little too big, but holy crap does she look cute! Our little ladybug's first real Halloween, and I cannot wait!!! Last year she was too tiny and we were in TX so we had nowhere to go anyways, but this year, we'll be out in full force! I'm so excited to see how she'll do with it all and just thinking about the future and what she'll want to be gives me a fuzzy tingly feeling inside my heart. I remember when my mom made me a Storm (from X-Men) costume for my 5th grade Halloween, I wish I could find a picture because it was awesome. I was SO excited to be storm, I could not wait to show off my sweet costume. The part I loved most was that my mom made it for me. I don't know if she knows that or not.

Enough for now, I am tired and I need to rest a bit.

First round of IVIG

I’m sitting here in the Cancer Center receiving my first round of five IVIG treatments. It’s a little surreal that I’m here. I was so worried 5 months ago when the numbness started that it would just continue and end up becoming a disability, and in some ways, it is a disability now. Weak wrists, wrist drop, foot drop (when your wrist/foot literally just gives out on you), balance issues, grip issues (I seriously have a hard time opening anything and grasping things tightly) Sometimes I worry about carrying Penelope. Usually I’ve got her held by my arms, and not my hands so much. I don’t think I’d ever forgive myself if my wrist gave out on me while she’s in my arms. I’m absolutely terrified to go down stairs with her in my arms, for fear that my wrist or foot will give out and down we’ll go.

Part of me is really worried that this treatment won’t do anything. But that’s me, the anxious pessimist. I worry that I’ll have to get these infusions pretty regularly, even every few months seems like a lot to me. I’d be stoked if I have to just do it once a year for the rest of my life. Who knows, we’ll see what the end result is. I don’t even worry though that it’ll take the numbness away, I don’t think it will, and I can live with that. I’ve gotten accustomed to having that “pins and needles” feeling in my hands and feet constantly (yep, going on 5 months of it now). But I’d be happy if it stops the progression of the numbness and keeps it from turning into a major disability in the future. And as I get older, it might, but for now, I’d be really happy if I can continue to be the mama I want to be to Penelope and our future kids. I don’t want this disorder to take away from that. I’ll never forgive myself if it does. Penelope needs me too much for me to let this ruin me. I’m strong, right?

Ok, enough of that for now. I want to talk about Pinterest. This is a website that is essentially my dream come true as far as inspiration boards go. I HATE making them in photoshop, so tedious and annoying. But this website just allows you to keep these pictures for anything on specific boards that you choose. I’ve got like 11 boards now I think, ranging from Baby Stuff, to cool photography, to hair ideas I love, to pics of handsome actors I like, haha. But really though, I could spend all day looking at this site. It is constantly updated with new pictures of crafts, style, clothing, home décor, unique sayings and quotes, kids ideas, etc… Like I said, basically it’s my interwebz dream come true. I love that all these things I love are in one place and I don’t have to save all of these hundreds of images on my computer (taking up unnecessary space) and also most of this is stuff I’d never find on my own. It’s kind of cool to see what other crafty mamas are into and what cool ideas people come up with. It’s the best thing ever. If you want an invite to use it, just comment below with your email and I’ll send you one.

That's all for now. More tomorrow, maybe with pics if the hospital's internet stops being stupid.

4 months old and other things

laughing at nothing in particular

Penelope is 4 months old today. She is 17 weeks and 4 days old. I cannot believe how fast the time has flown. She is now rolling over from back to front, and can hold up her head pretty well now, for a few minutes at a time. See?

She was watching hockey with her daddy

She's growing up so fast. I try to take pictures everyday so that I can capture every moment of her. I don't ever want to forget her like this. I love this age. She's finally *really* seeing things and grabbing things and smiling and starting to laugh a little. She also does this little dance with her legs that we warmly refer to as "the baby shuffle" and likes to yell while watching hockey with her daddy.

I can only imagine what kind of comments I'll have about myself in this picture 18 years from now. Penny looks lovely though, her little chubby cheeks!

Her 4 month appointment is Wednesday, so I'll get to find out just how big she is. I think that she's got to be around 15 lbs or almost. She's getting SO big! Also, she's TALL! She's got these long legs and seems to stretch out for forever. I'm not looking forward to the shots, since those are never fun for anyone. I feel so bad for her. Poor thing. But I think Hubby will get to go this time too, so he can console us both because I know I'll cry with her. I did at the 2 month appointment. haha

I've recently started working again. It's part-time for now but will hopefully turn into more closer to full-time as we need the $$ right now. But honestly, working again makes me feel really happy. I never thought I'd miss it but I really do. It's nice that I can work from home, I feel lucky that this opportunity fell into my lap!

Lately I've been dealing with some weird health issues. My left thumb went numb about 2.5 weeks ago, then my right ring and pinky fingers are numb, and now for the past week my right foot has been numb and is getting harder to walk on. My left foot has a slight tingly-ness to it, but isn't quite numb yet. I've been to my doctor and he's referring me to a Neurologist this week. I'm hoping I can get in to see her ASAP because I really just want some answers. I'd really love to know that I have some pinched nerves and just need physical therapy and not that I have a tumor or something awful. My doctor mentioned the word neurologist and I started tearing up, I was hoping it would just be poor circulation or a slipped disc in my back or something, but it's not. Now I have to go see a neurologist and pray that I'm ok, that this is fixable and that I'm not about to get some terrible diagnosis. I think my biggest worries circle around me not being around for Penny. Even typing that sentence is scary. Maybe I'm overreacting, but not having fully functioning limbs is scary, no, it's terrifying. Every day it's getting more noticeable and a little bit worse, mostly in my right foot.

Even worse, our financial future is depending on what my health issue is. Whether I just need physical therapy or if it's a tumor and I need surgery, our health insurance is up in 10 days and we have to either switch to a cheaper insurance with less coverage and a MUCH higher deductible or sign up for crazy expensive Cobra to continue our current insurance. This is INCREDIBLY stressful, because if we do the Cobra, we have to break our lease and move back in with my parents. Even if we don't do the Cobra, that's still a possibility.

Things are pretty stressful at the moment. I won't lie, I'm pretty nervous about a lot. I've bitten off all my damn fingernails because I'm so nervous. I'm scared for our future, I'm scared for Jim, I'm scared for Penny. I'm scared for me. All I know is, I need to fight so I can be here for this wonderful little girl: