Random Ramblings Again

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It’s been so busy here, it’s unbelievable.¬† Here it is, already the middle of June and I am still feeling like it’s the beginning of spring.¬† Of course before I even register that it’s pretty much summer, school will be starting and summer will be over.

I went back to work about 3 weeks after getting out of the hospital.¬† Those 3 weeks at home weren’t exactly bliss.¬† What I was hoping for was 3 comfortable weeks to get back on my feet and spend some time with my kiddo.¬† What was it really?¬† It was filled with both my daughter and I getting a cold (which we both still have coughs from) and what I shall term the never ending headache.¬† (I’ll get to the headache later)

Honestly?¬† Those weeks I learned how inpatient I really am.¬† I do not like the whole “time to heal” bullshit, it’s basically admitting that I need help and downtime.¬† While being at home itself didn’t bother me, I didn’t like that my body couldn’t keep up with what I wanted to do around my house.¬† It was damn hard to sit there and know that chores needed to be done, but I could only do one thing before I wore myself out.

It was nice on one front though, I was able to take my time getting the short one ready for school in the mornings.¬† Eating breakfast was leisurely and filled with chatter.¬† I was able to get her home right after school, so afternoons were spent outside or hanging out together indoors.¬† I’ve only been back at work for just under a month, and I already desperately miss that extra time.

Noodle is perfectly content with going back to full-time daycare now.¬† Her daycare morphs into a summer camp every year (and is still cheaper than most daycares around here).¬† They go to the beach and water park on alternating weeks, and take field trips to go mini-golfing and to different parks around the area.¬† She’s already been to the beach once, to a joint with bowling and one of the many bouncy-house-filled-trampoline-places that have become ever so popular.¬† Summer camp is always so fun for her, while I feel guilty for missing out on time with her because I’m at work, she’s off having a blast!

Like I said though, I’m back to work.¬† It hasn’t been as easy as I thought it would.¬† It’s still taking some time for my brain to catch up on my tasks (which involve dimensions and math at the moment), but I’m getting there.¬† I never really got off of my sleep schedule, so that wasn’t/isn’t a huge issue.¬† The toughest part has been dealing with my apparently numerous health issues while trying to act like nothing is wrong at work.

I had an issue for a couple of weeks with one of my incisions, it kept opening up and was infected for a short bit.¬† Trying to take care of that, while wearing pants (it was right where the waist band sits) and talking to coworkers and customers wasn’t exactly my idea of fun.¬† That and the headache… or headaches… or whatever (again, I’ll get to that), it’s damn near impossible some days.

I feel bad because I know I’ve been snippy towards my coworkers, and I’ve made it a point to apologize and try to keep them in the loop with everything.¬† It’s still not their fault, but sometimes the pain and fatigue is a little much, and they’re in the wrong place.¬† They are basically like an extended part of my family at this point, so hopefully they take my apologies to heart and understand how rough it’s been.

So.. the headaches.¬† In a previous post I mentioned the first headache I got in the hospital.¬† The one that couldn’t be eased even with morphine, dilaudid, and ativan.¬† The one that made me think I was going to die?¬† Well.. apparently that’s part of my life for now.

Shortly after I got out of the hospital, I coughed (remember I got sick?) and BAM! my head exploded.¬† I dropped to my knees just holding my head.¬† 4 hours later and I could function a bit like a human being.. but it left me with a low-to-mid grade headache that never went away.¬† So following the floor doctor’s instructions, I made an appointment with a Neurologist.¬† So for the better part of a month, if not more, I’ve had a headache every day.¬† Some days are worse, some days are tolerable.¬† Some days I am relatively normal?¬† Some days I just cry.

I went in to see my new doctor on Monday.¬† Very, very nice lady, who asked me a bajillion and one questions and preformed a neurological exam.¬† She’s not entirely convinced that the headaches are migraines for a few reasons, the biggest being that when I have a headache, light and sound don’t hurt me.¬† Just motion.¬† She’s trying to figure out what kind of headaches they could be.

However, since the first one I ever had was in the hospital after major surgery, she wants to rule out a blood clot or something along those lines.¬† I had a MRI while I was in the hospital, which was clear for massive clots and tumors, but she wants me to have an MRV and MRA, which are similar but look at the arteries and veins in your brain.¬† That appointment is on Monday.¬† In the meantime, I’m on a headache preventative and I have some pain pills as back up.¬† I know I have to give the medicine time, but seeing as how I had vision changes which bloomed into a huge headache (luckily it popped in my mind that the vision changes I was having might be what’s called an aura… and took a pain pill before the headache hit… so I took the edge off) yesterday, that hasn’t left yet (although it’s a bit better this afternoon), I’m nervous.

To be completely honest, I am just scared that I’m going to end up with another chronic condition.¬† What if I end up having these headaches long term on top of my Crohn’s Disease?¬† I know that I’ll buckle down and make it through, just like I always have, but it’s terrifying to me to have to face something else.¬† I went into surgery with high hopes of an improved quality of life, come out and end up with headaches… and now what seems like Crohns symptoms.

Yeah, I have symptoms that remind me a bit of when I first got sick.¬† Odd stomach pains, running to the bathroom, etc.¬† I hoping it’s really just an oddity, a side effect of surgery.. maybe it’ll go away soon?¬† I’m giving it a little time to see, but then I’ll be calling my GI.¬† I really, truly hope that this isn’t the disease coming back already.

The whole headache/Crohns debacle just really gets to me.¬† Like I said, I let my hopes get really high for this surgery.¬† I’ve been sick (with good days at some points) for 8 years now, I allowed myself to hope that I’d get a break after surgery.¬† Coming out of the whole ordeal with a whole new health problem is… well.. it’s hard.

Honestly this is where I’m thankful for the people around me.¬† For Ry, who’s literally been by my side through all of this, from all the hospital visits to surgery, and now with head/neck massages when I want to crack my own skull in two.¬† I’m thankful for my daughter, who understands that sometimes mommy has to take it slow, and through living with me, has learned a compassion that most kids her age don’t get.¬† Sometimes her hugs and kisses (and HUGE art projects… excuse me, weather machine.. ahem) are just what I need to keep trucking.¬† Hell, I’m thankful for my coworkers who visited me at the hospital, and have been making sure I take care of myself at work.¬† All the way to my neighbors who have helped out all they can.

I did manage to feel pretty good for Noodle’s birthday WEEK though, so that’s a major bonus!¬† Yes, I said week.¬† The kid lucked out this year due to everyone’s schedules kind of colliding.¬† She got one Saturday at Grandma and Grandpas, her birthday at home, and a party with the neighbors the next Saturday.¬† I think my kid is actually sick of cake at this point.¬† She got a lot of great gifts too, I’m super glad she had fun, because she deserves it!

Which reminds me!¬† I got her last report card, and my kid got good marks in everything (except for handwriting… it’s messy).¬† She tested well in math and is super ahead in reading (that’s my gal!!).¬† I am definitely proud of my little monkey and how far she came these past two years.¬† We went from her not wanting to read, claiming she couldn’t, and flat out refusing to read out loud, to reading everything I give her, quickly too.¬† Definitely a proud mama here.

I think that’s enough for tonight though, I had a bunch of thoughts bouncing around in my head.. as you can see my writing is just all over the place.¬† However, if you¬† haven’t noticed, I’m not much one for proofreading, and sometimes I just have to get it out.

I’m off to bed.¬† Goodnight!

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Split Second of Terror

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Saturday started off very well. Surgeons moved me to normal food, which I tolerated perfectly. My doctors took away the iv drugs and fluids and we had the midline pulled. I felt great.

I got up to run to the bathroom, sat down to do my business and my head exploded. It took everything I had to finish cleaning myself up and get myself to the call button.

I had never experienced pain like that before and after a few minutes the doctors had gathered around since my heart rate shot up to 190. They were concerned about a blood clot in my brain. Hearing them ask for a crash cart just in case.. I could barely hold it together. I thought about the kids, about my parents and Ryan. Was this dying?

I cried all the way down to cat scan and then though MRI and an EKG. I got back to my bed. Was given more drugs and slept. Both scans appear clean.

Made it all night without pain medication, I was so excited! Maybe it was a fluke, I’m okay! Woke up for vitals and bam! Headache! It’s not as bad as the last one, so maybe we can figure it out.

It’s just so disheartening. After all these years, I finally get surgery for my Crohns Disease. It goes well, so I start looking at the things I wanted to do this summer but usually don’t because my health. So close. So close to normalcy.. and something else has to happen.

Let me tell you something though, when you’re laying on a bed, listening to doctors freak out about blood clots, sending you too another hospital, etc, your mind turns off and thinks. You think about if “this is it”, you’ll think of your family, of the things you had been promising yourself you’d change for the better. You block all of them out as the aide hands you your teddy bear and you think about all the stuff you have taken for granted.

Obviously I’m still here, still kicking, but that little scare put everything into a new perspective. It’s a scary new perspective, but it’s essentially a clean slate that I get to start as soon as I get out of here.

Living is not the same as living life.

Slice and Dice 2015

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I had my first bowel resection yesterday. Let me tell you, that’s not on the things to do for fun list.. nope. I haven’t had anxiety attacks like that in a long, long time. The day before, lab and the iv team were having a hard time getting blood and keeping me from blowing ivs. I ended up with one on the inside of my dominant wrist. The iv team guy was completely honest with me, he didn’t think it would hold and thought I needed a picc line. At that point I had been stabbed numerous times and my anxiety had gone into full-fuck-you mode.

My surgery was scheduled for 10:30am. Lab came in to try and draw blood and got absolutely none. After the 3rd attempt or so I started to lose it. Had to ask for anti-anxiety medicine. Shortly before surgery, the guy from the iv team blew in to start a mid-line. He was afraid that surgery would blow my last iv and not be able to start another. 4 tries and he got it, but it was pretty gruesome. I’d post a picture, but I don’t want to freak people out. Anyway, it’s much better now that I’m not having an anxiety attack every time someone has to draw blood.

Surgery itself went fine. They removed a small portion of my small intestine and part of my colon. They also were able to detach part of my colon that had decided to cling onto my bladder. No bladder reconstruction needed!

To be completely honest though, the pain is a lot more than I expected. I have a pain pump that I’m just now getting used to using so I can at least get a little comfortable. It’s taken me a little bit to feel comfortable dosing myself, especially due to this one nurse..

Backtrack: there is a nurse on this floor that I’ve been referring to as the Know-It-All-Nurse. She’s the one who originally made me feel uncomfortable here. I’m not much one for pain medication, I don’t take it unless I truly need it. So Know-It-All refused me a shower before surgery because of my continuous drip of prednisone. (I literally had to have my doctor add a note in my chart to unhook me if I ask) So, by cleaning up the best I could, I started to get some pretty bad pain. 8/10 pain. I asked for a half dose of my dilaudid. First thing out of her mouth was a comment about how I should cut down on it.

Excuse me? 1. I wouldn’t be in pain if I could have taken a shower the normal way. 2. I have major surgery tomorrow, and you’re worried about a half dose? And 3. I NEVER ASK FOR PAIN MEDS IF I DON’T NEED THEM.

So whatever. Back to present tense. All day I’ve had my surgeon, the surgical PAs, and my GI telling me to press the hell out of the button on the pain pump. Basically that since I already have inflammation on top of just having major surgery, it’s going to take a lot to make me comfortable. I was having anxiety attacks all morning over pretty much anything because the pain was so bad. I finally got a hang of using it and am halfway comfortable.

In walks Know-It-All-Nurse. She has already been condescending about my not wanting to wear the compression boots because I am up walking and getting blood thinner shots. It took her all of 2 seconds to say “Well it looks like you’re using your pain pump a lot.” Duuude. I’ve never had a nurse talk to me in such a condescending tone. No shit I’m using it a lot. I’m supposed to. I’m already back on the verge of panic and all it took was her showing up. Now I’m such a bundle of nerves that I don’t even want to ask for my anti anxiety medication, I don’t even want to deal with her.

Seriously, the rest of the staff here have been phenomenal but this has been the most nerve-frying, painful stay I’ve had here. This nurse is making it 10 times worse. I’m almost tempted to ask for a different nurse.

Arrgh.

Living with Crohns Disease – Intestines for Sale

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I think one of the biggest things I hate about living with Crohns is the future. ¬†When you have a chronic illness, sometimes it can flare up, for no fucking reason and kick your ass (figuratively¬†and literally). ¬†I hate not-knowing. ¬†Especially lately. ¬†When I was in a full-flare, not-knowing wasn’t bad. ¬†The only thing I couldn’t predict was feeling better. ¬†So when I had a random day, out of the norm, it was fabulous. ¬†Now though, I’m practically in remission. ¬†The normal symptoms of my disease are practically non-existent, except for the fistula.

Yes, I still have it. ¬†It connects a loop of my intestine to my bladder and it makes for ¬†a bad day. ¬†I was planning on surgery but a multitude of things made the decision for me to put it off. ¬†(And unfortunately followers, this decision is not up for debate.) ¬†So basically as the decision goes, I am trying to stay as healthy as possible for as long as possible until I have to have surgery. ¬†It’s a horrible plan, but at that point in time it was either choose to have the surgery and fuck¬†everything else up, or put it off so life is more stable for a major surgery.

Anyway, on with my rambling. ¬†So for the past few days, after months of being symptom free, I haven’t been feeling too well. ¬†Fistula symptoms, upset stomach,¬†diarrhea and nausea. ¬†I’ve been taking it easy, sticking to teas and easy to digest foods instead of my coffee and grease. ¬†Doesn’t seem to be too much change, but I’m still wary. ¬†Having had two obstructions in the past, anytime symptoms mimic the early signs of obstruction I get worried. ¬†So I’m taking it easy and hoping for the best yet still preparing for the dash to the hospital just in case.

Sometimes Crohns Disease seems to suck the life right out of me and not in the way you’d think. ¬†On my bad days, I still strive to do everything I normally would do as well as things I want to do. ¬†It’s the mental aspect that is different. ¬†It turns my normally hectic mind into something more anxious and scary, almost more chaotic and full of worry. ¬†I don’t want to end up sick, I hate being in the hospital, but at the same time, I long for all of this to be over with.

Normalcy. ¬†It’s something I strive to have, but Crohns Disease messes it up.

If it ain’t broke, don’t fix it, surgically remove it.

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Crohn’s is a dirty, dirty, low-blow throwing bitch. ¬†Even worse, my mind is my own worst enemy sometimes when it comes to my treatment. ¬†I have such a hard time accepting the different stages of treatment. ¬†Hell, just page back through the entries, you’ll see the mental¬†dilemmas I went through when I was considering going onto Humira. ¬†(Like that even worked, totally lame!)

Now look at me! ¬†I’ve been getting infusions of Remicade since last year, been on (and took myself off of) 6MP, and am still living on Prednisone. ¬†Add in dozens of antibiotics, muscle relaxers,¬†corticosteroids, and assorted other crap, and I’m pretty sure if my genes didn’t dictate that I am to have cancer, ONE of these meds will have caused it.

Next up on the Crohns To Do List? ¬†Surgery. ¬†I’ve narrowed down S-Day to the first week of December, if my surgeon’s schedule allows (I’ll find out tomorrow, unless my subconscious¬†sabotages¬†me again). ¬†¬†Like I said, I’m still on Prednisone, I’m on my last week of¬†tiering¬†off. ¬†So only a couple of weeks of hell left. ¬†My current mental problem? ¬†Now that I’m starting to feel normal again (starting¬†being the keyword, minus the steroid side effects of course) it’s harder and harder to accept that I need surgery. ¬†When my days are damn near normal, it’s hard to think that I’ll be going under the knife in about a month.

Now now, I realize that I have to be remotely healthy to have surgery, (since it’s not an emergency situation and to get the best possible chance at a quick recovery) but damn, the better I feel, the harder it is to convince myself I need to have part of my intestines removed. ¬†I’ve been putting off surgery for a long time now, feeling somewhat human makes that easier.

On the flipside of that note, I also realize that this fistula isn’t going to heal on it’s own. ¬†Obviously. ¬†I am coming to terms with the fact that I NEED surgery. ¬†That I need to get this taken care of, and once I do that, I’ll actually have a true chance at remission. ¬†I know that if I put this off, eventually I’ll end up with an obstruction that puts me in the hospital for a much more complicated surgery.

 

So time to buck up and deal.

 

And take my stupid pills.

 

Stupid Prednisone.

Missing in Action: One GI Joe – One Uncomfortable Surgeon

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Everyone knows I’m a horrible patient. ¬†I’ve chased away more GI doctors, surgeons and doctor’s assistants than I can count. ¬†My step-ma says it’s typical for a Crohns patient, that most doctors know we all almost have a personality disorder, but alas. ¬†I just dislike doctors and hospitals.

It’s a damn shame that I have to spend so much time in them.

After the last bowel obstruction, my GI finally managed to convince me to have surgery.  It only took 5 years and 2 obstructions, I should give him an award.  Unfortunately for the rest of the hospital and to the delight of my step ma (a doctor there) I chased away the surgeon that was assigned to me while I was admitted.  Then signed out AMA.  Like usual.

However, I did finally go in for my surgical consult. ¬†Step-ma found me a surgeon that according to her and my GI (the only doctor I haven’t chased away.. not for lack of trying) that I will “mesh with”… ie: not destroy. ¬†He seems alright, however it made my day when I managed to make him uncomfortable. ¬†After he described the surgery I said “You know um, hey. ¬†I kinda lost this gi joe figurine like 3 years ago… when you’re like all… in my¬†intestines¬†and what not… and if you find him… please bring him back. ¬†I miss him.” ¬†It was like I kicked his puppy. ¬†Or first born child. ¬†Either way after a good 20 second blank stare and a blush, he laughed. ¬†Which means he’s okay in my book. ¬†So far.

So here’s the deal. ¬†Crohns has destroyed at least a 2 ft section of my small intestine. ¬†For some reason, even though the disease has jumped around quite a bit over the years, it’s always hit this section the worst. ¬†Said section developed a fistula that attached itself to my bladder. ¬†So what I need done is a resection, I’ll lose those two feet and possibly a small portion of my colon, and they’ll remove the fistula and repair my bladder. ¬†Yeah. ¬†I’m 26 years old and I’m having bladder reconstructive surgery. ¬†Oh joy.

Since I no longer have an obstruction, just swelling, it becomes an elective surgery. ¬†The surgeon wants it before the year ends, and I want it before the holidays. ¬†Nothing like major surgery before Christmas. ¬†So I’m aiming for the beginning of December. ¬†I’ll be out of work for at least a week, most likely two, but after that, with any lucky, my Crohns will be in remission for a long time. ¬†Complete remission. ¬†Something I haven’t even had thanks to this damned fistula.

Am I happy about surgery? ¬†Hell no! ¬†It’s something I’ve literally been avoiding for 5 years. ¬†It took major convincing to get me to go on Remicade, even Humira. ¬†Whenever surgery was brought up I just walked out of the office/checked myself out of the hospital. ¬†However, after 5 years of this, I’m tired. ¬†I’m tired of the constant pain, the stomach issues, the 3 year long UTI. ¬†I’m tired of hospitalizations every other month and steroids. ¬†I’m tired of being sick. ¬†Surgery gives me the chance to be healthy, at least for a little while. ¬†So even though I’m terrified, I’m going to hop in the saddle and go for it.

You fuckers better come visit me in the hospital.

The things I hate about you… and by you I mean Crohns.

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I feel a bit blah today.  I know why too, and I hate it.  Just like I did last time.  Prednisone.  The oh so wonderful steroid that helps so many of us Crohnies, kicks my ass.  Yes, it helps with the fistula and it helps push my disease closer to remission, but good god do the side effects suck.

I’m not sure what it is about this time, but the side effects have popped up in half the amount of time. ¬†I’ve only been on a heavy dose of steroids for just over a week and I feel like I did three weeks into steroids last time. ¬†My body aches, my joints sting, and my skin hurts, especially around my face and shoulders. ¬†My brain is foggy too, which was a huge complaint of mine last time around.

The point of taking steroids this time is to get my body healthy enough for surgery, which I’m willing to do, but that doesn’t mean I’m not going to complain about it. ¬†I feel hung over, even if I haven’t had a drink in longer than I can remember. ¬†I feel blah.

It definitely doesn’t help that this week was very busy, especially the last half of the week. ¬†We had two girls out, and I have been playing catch up on top of it after missing days for my hospital stay last week. ¬†Combined with the extra hours I picked up to help out and these stupid drugs I’m on, I’m exhausted.

I got a lot done this week. ¬†I feel like I’m caught up at work for the most part, and the house doesn’t look too shabby. ¬†Bills are paid and errands have been run. ¬†This week was hell, just like last week was, but at least it was productive. ¬†This weekend looks much better though. ¬†Ryan is going to be working a short day tomorrow, so that means lounging around the house until he gets off of work and then relaxing for the rest of the weekend, until my drive to clean and organize steps in anyway.

As always though, I’ve been doing a lot of thinking, as I always do when I get sick. ¬†It seems like when you’re down and out with your health, your true support network shows through. ¬†As always, I am reminded how lucky I am to have such wonderful people in my life, and how happy they make me.

I’m lucky to have a job that I love and that¬†accommodates¬†me with my odd health schedule. ¬†I may want to torch the place half the time, and bury my coworkers in the back building, but hey, who doesn’t? ¬†I’m lucky to have coworkers who give a shit about how I feel and my overall health… even people I don’t work closely with every day have shown concern. ¬†From truck drivers to stores, every day someone new pops up and asks how I’m feeling and how I’m doing back at work.

Of course I’m extremely lucky to have my parents. ¬†My dad took Noodle for a couple of nights while I was in the hospital last week and spoiled her. ¬†My sister apparently took her to the zoo, but I wouldn’t know first hand, I heard from my Dad. ¬†I’m glad that I have such a lovely family who looks out for my kiddo and takes care of her so I can rest and heal. ¬†My friends have played a huge role, from my “cafe-mom” friends to Katie and Ingrid (Girls I grew up with). ¬†My neighbors even brought over a meal when I got home and have cut me some slack for my crap-mood. ¬†Yet again, I’m reminded that family is not just blood. ¬†Some times people who aren’t even related to you, step up more than blood does.

I am more than grateful for Ryan too. ¬†When we first got together, I was concerned about how he’d react to my Crohns Disease. ¬†I mean it sucks, some days I hurt too much to eat, or am feeling run down enough to just want to lay in bed. ¬†(Granted, I’m still more active than half the people I know haha). ¬†I worried what he’d think about my having to get Remicade Infusions, or when I’d end up in the hospital again (we actually started dating right after my last obstruction ~ cute note ~ he had offered to bring me a bag of books while I was in the hospital, it’s what peaked my interest to begin with. :)). ¬†I was concerned that he wouldn’t be happy with a girl who was sick, and who will be sick until there is a cure found.

At this point though, I’m extremely glad I met him. ¬†He has been by my side every step of the way. ¬† He comes to damn near every doctor’s appointment, and has only missed one infusion (due to work). ¬†He spoils me when I feel sick, and picks up the slack when I’m down. ¬†When I realized it was time to go to the hospital, he came with, helped me with Noodle (ie: getting my Dad to come get her, packed up her and my stuff, and took care of her for the first 8 hours we were there.) ¬†He listened to me bawl because of the pain, then again because of the heavy drugs (I don’t know, I’m a crier on pain meds). ¬†He listened to the pros and cons brought to us by the surgeons, and he met my doctors.

Most importantly, he sat there and held my hand, only leaving when I made him. ¬†I don’t know what I was so worried about. ¬†Crohns Disease hasn’t made me a worse girlfriend, just like with being a mother, it just made me a little more unique. ¬†Luckily for me, I found a man who loves me for who I am, even if my body is a bit off. ¬†It’s nice to know that I am not going through this alone, that Noodle is not going through this alone. ¬†Not only do we have the support of our family and friends but Ryan. ¬†We’re very lucky.

So worn down I feel today, but all in all I’m not in a horrible mood. ¬†I’m am looking forward to spending time with my kid and the boyfriend this weekend, and just enjoying snuggling in in the morning. ¬†My Crohns may be kicking my ass right now, but that’s not going to stop me from baking cookies with the kid, having a sci-fi marathon with the boyfriend, and enjoying my weekend. ¬†So for now, I’m going to drink this last bit of coffee and wait for dinner to finish. ¬†It smells awesome, and I’m sure since Noodle and Ryan cooked it, I’ll eat every bite.

I hope everyone has a great weekend and enjoys this first couple of days with the Autumn chill and rain.  Happy Friday.