Thursday, December 26, 2013

Surviving the Holidays

Hi guys. I know it's been a little bit since my last update.

I managed to do Thanksgiving dinner with getting help with anything that involved cutting. Other then that, I was able to do the whole meal on my own. I didn't really have any issues until I started to relax, then everything started to hurt and bad. It got worse in the following weeks because I was only able to get in with my physical therapist once a week.

Word to the wise: DON'T DO THAT!!!

It took another 2 weeks to get back to feeling normal again and only after she used athletic tape to hold things in place to either stop them from moving (along my neck and shoulder) or move things closer to where they should be. We found out my right shoulder blade is lower then my left. The left is still over working and I have muscles that tense up when the other arm moves. I'm a hot mess.

But... This is my third round of being taped together. I haven't had to take a pain pill in almost a week. I like that because that is about where I was before Thanksgiving. Being taped together has really helped me stop over using certain muscles and we're getting closer to a point where we can start strengthening things. I've been trying to scribble daily but there are times it's still hard to hold my pencils or pens.

It is improving though, just very slowly. I was told to not do Christmas dinner and advised against making candy this year. I still made candy though... I just enlisted the help of a friend. Wrapping took an insane amount of time this year, but my packages still looked amazing. :) Christmas dinner I had to give up since Thanksgiving nearly killed me. That was hard. I love to cook big dinners like that and was really excited to do prime rib. Like everyone has said, there is next year.

With how things are going, there is a very high probability I'll be celebrating new years taped together! I'm ok with that... at least the tape is black! :P

But honestly if you asked me how I felt about it about a week ago, I would have bawled. I was MORTIFIED I was being taped together. My posture has improved though and the pain is almost gone. :) I'll try and do a Christmas haul post. I did get some cool art related things... but one of them must be exchanged. So expect that before the new year!

Tuesday, November 12, 2013

Good News!!!

Guess what!!!! I had my 2 month follow up today and was told I'd  improved 50% since I first saw Dr. Johanson in August!!!

I still have a lot of weakness in my hand and the pain is generally in my shoulder and neck area now. :)

Tuesday, November 5, 2013

I did a thing!!!

That's right!!! I made an attempt at a thing!!! I was fine too until I switched to my fine point pen to start inking. That was stupid and I knew better, BUT I DID A THING!!!

Luna promptly decided to put an end to my work. Little pain in the tail...

I'm at a point where I am noticing a lot of improvements. Typing no longer feels like I'm stabbing my hands. They do still go numb from time to time. Once in a while, and usually when I've done to much, everything will throb. I've been down to one oxy every few days. Though since Sunday I've had to do at least 1 a day. I'm ok with that though. We've hit a cold snap and I think that might be what's caused things to act up. It's mostly been in my shoulder too and not my hand.

There was the hard talk while in physical therapy the other day that I will not be doing any weight training to regain strength. Everything will be for pain management. That was a bit of a let down but, I'm seeing how therapy has helped keep me at a functioning level. It's been a week since my last appointment and I'm feeling it. Usually, the longest I've gone between appointments is 4 days. Due to scheduling issues, I was only able to get in one day this week. Oh well... now I know it is helping though!

Sunday, October 27, 2013


It's being made, even if it's been slow. I'm not having to rely on the pain meds so much now. Usually by the end of the work day I'm still shattered. I sleep as soon as I get home. I have lots of stretches to do that help the nerves come back and the massages at therapy have helped muscles relax for at least a little bit. I still am not able to turn my head fully or for very long without my throat swelling and my neck straining.

I was also told I could start doodling again, but for no more then 10 - 15 minutes a day and with a thick pencil. Small ones are still hard to grip. I bought a new sketchbook... kind of as a new start... but I've been to scared to put pencil to paper. I've had it since Thursday. I know it will hurt. I know that I will have to practice like mad to get back to where I was and I know my beloved colored pencils are still out of the question. I know it will still hurt, and that is the part that scares me. I'm really tired of being frustrated and being told no.

It is here and it is waiting for me to get the courage to try. I'm still not cleared for fabric though but I was told I can use it to help strengthen my grip. It's not to be working on exercises that I can see will get me somewhere.

Friday, October 11, 2013

It does not pay to be stuborn... sometimes

I did make my return to work. Going against what my doctor had originally wanted, I decided I was well enough to do a full 8 hours. Around 2pm on Monday, I was yawning, exhausted, but refused to admit defeat. I'd been out a month, I should be healed enough to work a full day, right?

WRONG! As soon as I got home, I passed out. Day 2 was about the same except I didn't pass out once I got home, I was up until almost 11. Both days I didn't have to take any oxy until the evening. I was ok with that. I was in control... or so I thought.

Wednesday I woke up with the hint of the start of a migraine. I shook it off and chalked it up to not really eating anything. I ignored the fact it was on the right side of my head and not in the sinus area where my migraines normal start. Something told me this wasn't going to be good though, I popped 1 oxy and ran out the door.

I got to work, I was drained. Oxy doesn't make me sleepy, it makes me wired and lovey. I was ready to pass out where I sat. The pain was also getting worse. The office manager looked at me and told me to keep her posted but she thought I should go home right then. I pressed on, but was barely about to fake a smile at that point. I went to hide in med recs, but now the pain was behind my eye and in my teeth. MY TEETH!!! I tried to call the front desk and couldn't figured out why the extensions didn't work. I was using patient account numbers as phone numbers. This is when I started contemplating the scary bus to go home.

Thankfully, a coworker printed off a sheet with a different and safer bus route with express buses to get me out of north Seattle. Another coworker took my hand, pinned the instructions to my jacket, grabbed Sakura Bunny and drove me to the transit center across the freeway. She said she didn't trust me to leave unescorted. I quickly jumped on the first bus that said it was going downtown and started to crash. Completely ignore my rule about not sleeping on an unfamiliar bus. I got downtown, getting off at Westlake and got a happy meal. The lady at the counter didn't bat an eye and asked if it would ruin my day if I didn't get a Wizard of Oz toy. I told her my day could not get any worse at this point, just as long as it was pink, I didn't care.

My throat had swelled again though so I really didn't eat. I did down the large coke I got and wished I'd gotten soft serve instead of real food... or semi real food. I'm not a fan of McDonalds, but I was so low and confused at the point that was all the sounded good... and soft serve. I promptly finished what I could and jumped on a bus home. I called the doctors office and asked for a new note setting my hours to 4 - 6 as tolerated until my next follow up in November.

When I got home, I took a bubble bath and barely made it to bed before passing out. I slept for 13 hours, something I've never done. I had a heating pad on my neck and my microwave homemade one over my eyes. After another round of oxy, the pain was still there. I was sick every time I got up for 6 hours. It was horrible.

Thursday I did 6 hours, but just barely. I also talked with the new manager who'd started while I was out. She was super helpful and supportive. She kept reminding me to not push. She'd looked up what I had/have and was surprised I was even back at work. She assured me that with the note covering me, that I needed to focus on healing, to not push it. I was so grateful to hear that from someone that meant it.

Today, I started physical therapy. My trainer is about my age and had had neck surgery over the summer. She knows where I'm coming from and it's actually really helpful. It was really discouraging seeing the numbers for my strength and mobility on paper... to admit that I can't open jars or cut my own food. She asked my goal and I told her it was to have my sketch book as part of my arm again. I want to draw so bad but even she said that it will be a couple weeks before I should try. While she worked with me today, she let me hold on to Hope, the little fox I carry in my purse. She commented on who my body will react to the painful spots long before I say anything and I told her I have a very high tolerance. She said that the scar on my shoulder was not healed enough to really work with but the one on my neck had. It was a good experience... but also frustrating.

When I went back to work, I struggled to do the bare minimum. I finished what I could before admitting defeat. I didn't take the bus home today, I slept in the vanpool van... after ditching my bar and having a good cry.

When I'd talked with the new manager, I told her how frustrated I was because this isn't me. I started early and often stayed late. I'd jump in when we where short. I worked through lunches to make sure other people got their breaks. When this got worse, I started to stop doing that. I'm not this person and I'm scared that people will think I'm taking advantage of things... but I realize now I just can't do it... at least not yet. She told me that while I was gone, everyone talked so highly of me. She kept hearing how Lin would jump in and help. Lin made sure birthdays where extra special. Lin knew all the answers. Lin would brighten any day for anyone, even when she was having a bad one. I've never worked anywhere where I've had so much love or have been so respected.

The guilt is slowly fading for not being super hero girl (gold star if you know who sings that song!) While I try to remind myself that you can't fix 10 + years over night, I still struggle. A coworker put it best. "Now is not the time to be stoic. Don't ignore the pain anymore. Take the meds when you need them. No one likes to take pain meds but right now, you need to. We understand." So, I'm trying my best to take care of myself. I'm asking for help and trying to do what I can at work. I'm trying to not be so down about it, but I know there will be gray days for a little while.

Sunday, October 6, 2013

POL again

So, today I decided to be a dragon. Yes, that is a Toothless cap and it has all the ears and flappy things, it's just hard to photograph it in all it's glory. Yes, I know I don't smile. This photo is important for 2 reasons, 1 being I'm a dragon RAWR!!! 2 being that this was the first time in nearly a month that i was able to wear a bra. That's HUGE for me.

It's actually a bittersweet victory though, it's strapless. I attempted for the 2nd or 3rd time yesterday to wear one of my lovely's. While it hurt at first, it was manageable without meds. Then the random nerve pain started... then it felt like my shoulder was on fire. I then said fuck it and went into Lane Bryant asking (almost in tears) for their best strapless bra. It really really REALLY bothers me to go out in public without the girls up where they belong. Hell! It bothers me to walk around the house with people here and not be wearing a bra and borderline pajamas have been the extent of what the depression and the ability to reach over my head have allowed!

Tomorrow I go back to work and I'm scared to death. It's hard enough to blog, I don't know how I'll manage an 8 hour shift. We will see. I know I have a huge support system at work, but I always tend to push myself and that gets me in trouble. I was suppose to go back last Thursday but I got so frustrated I attempted to scrub the kitchen. It did not end well my friends and the kitchen didn't look good enough to justify the amount of pain I was in after. It was horrible.

The one spot that wouldn't close has finally scabbed over. I'm still scared to death of it. If I don't keep it covered I pick at it. While it is closing, it's still a pretty epic scab and the though of picking it and causing what's left of the stitches to come out is just... no... nonononono!

I start physical therapy on Friday and while that is a good thing it doesn't offer much comfort. It looks like Halloween is cancelled for me this year. What really stinks is that is the 3rd year in a row that going to the pumpkin patch is being cancelled. It's been my birthday wish to go with Shadow but something always happens. The first year I was sick and the weather was horrible. Last year I broke my ankle and I was laid up. This year... well I can barely cut onions or tomatoes. There is no way I can carve a pumpkin. I think back to last year and how much I struggled carving the one I had. Thinking about it bums me out because this is my favorite holiday. I can be myself and show off my skills. :) I might still try and do something that doesn't require sewing but I don't know. We will see. I know there are other Halloweens, but this is a pattern. It use to be something horrible would go wrong on my birthday, then I rebelled and started celebrating a birthday month and had a good year or 2. Then fate caught on and laughed and said no. I kind of feel like, since I broke my ankle last year I've had bad luck health wise. Since then that's caused a slew of doctors visits after years of avoiding them.

I'm hoping this will be the end of it. It will be a year since I broke my ankle this Saturday. No more broken bones, asthma issues, migraines from hell or nerve issues... well that last one is wishful because I know it will be a bit before that's normal again. Hopefully this time next year I'm covered in paint and thread. I'll let you all know how tomorrow goes... if I'm not to shattered and living off oxy again. T_T

Thursday, September 26, 2013

Post Op Follow Up

Yesterday was my follow up. It was really hard to keep calm, but thankfully Shadow came with me so that was a huge help. It was kind of cute because he asked the medical assistant if he could come back before I even asked.

I saw Dr. Johanson's PA (physicians assistant) who was really really cute! I mean REALLY cute. He was also closer to my age and had a very good energy. He was very calm and informative and gave me more info about what all was done.

I was honest with him, even though before that I was petrified about a pain questionnaire I'd filled out. I felt like I was being a baby and over exaggerating. I went over everything with him because I knew Shadow would flick my nose if I didn't. The PA said that everything I was experiencing was perfectly normal. He said I needed to stay on the percaset and not be so scared to take it when I needed. He really put me at ease about it. I've been having a hard time sleeping because of pain in my shoulder blade as well as not being able to sleep on my sides because of pain and feeling like things where being pulled on. I also asked him about when I can wear a bra again and he just laughed and said it would be a few more weeks. I'm really not ok going back to work without that key piece of clothing. Though the look on Shadow's face was priceless.

He asked to see my incision sites next. This was another concern because I have one area that wasn't closing and was oozing. I know, nasty, but I was really concerned because I've never had anything do that before. The cut along my neck has healed enough that I really don't need to keep it covered, but the oozing one.... yeah, no way. So while he's looking at the site after peeling off the massive waterproof medical grade band-aid i've had covering most of my shoulder, he says in the calmest manner possible that my body is rejecting the stitches in that area. This was the first I heard about having stitches at all. All that was there was glue. A LOT of glue. So as he was preparing things to close my wound, he explained that I actually have A LOT of stitches under all the glue. I have 2 layers of a lot of stitches which is why I've been feeling the pulling sensation when I move certain ways. They had to cut through other muscles to get to where the scalene muscle connects. One of them being my pectoral muscle. So, I know have those nifty waterproof medical tape things covering the area that wasn't closing.

Neck cut is mostly healed with my tiny little angle kiss of a bruise.

While the top part looks oogy, it's mostly the glue and minor bruising. The oozing part is about a half inch.

While he was patching me up, the PA also told me that I shouldn't be lifting anything over 5 pounds. Shadow started laughing but told him he'd make sure I stuck to it. When I asked why my weight limit was being further limited, he told me that because of the amount of damage to my nerves and how weak I am in my right arm now, 5 is my absolute limit until I see him again in November. I was also given a prescription to start physical therapy, but weight/strength training is out until November.

Shadow assured him he'd make sure I followed orders. So we left and I had my meltdown in the truck. Shadow was actually really supportive at that point in telling me I'd done really well and didn't have my usual attack in the office even with what had happened Friday the week before with my prescription.

I'm cleared to go back to work, but the PA was pushing for me to do half days. He wrote me a note saying that 8 hours are as tolerated for awhile. My therapy part I think I'll be doing close to work. A number of people have said they would feel better if I went that route because of me being on the meds still and with how exhausted I've been getting still being out and about. This way I'd be close to work and near people that can pick me up instead of me taking the bus through the bad part of Seattle alone.

Thursday, September 19, 2013

Part 2, Life at Home

This one will have more fun pictures but I'm going to put a disclaimer here because I will be showing one of my incisions. I'll warn before they show up.

My bestest Irish twinkie boo had great timing! This was waiting on the door step. There's like 5 packages here!

When I got home, I had a pile of packages on the porch waiting for me. Mom had grabbed lunch for me, so while I ate the best freaking happy meal of my life (let it be known, I really hate McDonalds. I was craving a cheeseburger though.) Seriously, I don't know what it was, but that cheeseburger was amazing. I opened the mountain of love that had come from my twinkie, which required me to use scissors. I was able to use scissors guys! I haven't been able to use scissors in months! In my excitement, I took the glitter brick case off my phone. I could hold my phone with no pain and no case to make it fat. I could text even! Needless to say I cried. I took a shower and that was really hard with a garbage bag taped to your shoulder and not able to fully use your arm. It felt good though.

I settled in and read about my newest fashion accessory, the pain pump.

Upside down photo and I'm to lazy to fix it. Deal :p
No one told me that if I used the button on this, it would release more meds to the nerves. They also didn't tell me that that button is a bracelet. They ALSO didn't tell me that this thing was super mounted to me so that there was no way I could rip it out like I was terrified of doing. It was put in during surgery and my dad took it out on Sunday when the medication ran out.  The clear circle part was filled with a doughnut of medication that was slowly released. The bracelet part stored medication as well to give you a boost when you needed it. It was super helpful, but I was terrified to have it taken out. It turned out to just be a wire, about 7" of wire, that was inside me releasing meds. Didn't even feel it taken out. I was so happy to take a shower after without having to mount the damn thing in the shower with me!

I was given percacet when I checked out of the hospital. A LOT of it... I've never been given more then a few. I had strict instructions to take them on schedule. I've had too to. The first couple days I was taking 2 every 4 hours. I couldn't have managed otherwise. I was still struggling with being short of breath and I was finding that when I ate anything that was soft, my throat would swell. Sunday, I got cocky. I wasn't taking them on schedule. Monday was about the same and I started only taking 1 every 6 hours, maybe. I payed for that Tuesday.

Tuesday the pain was horrible. I hadn't been sleeping again because percacet I've found makes me hyper. Tuesday I woke up at 4am, or more over I gave up trying to sleep at 4am. I took a pill at 6 am even though I was long overdue for a pill. My throat started to swell after a few bites of applesauce so the bowl took 2 hours to eat. Shadow came over to babysit me that day. By the time he came over, I was really trying to hide the fact I wasn't comfortable at all. He tried to massage out my shoulder blade and neck. He was scared he was going to hurt me but he was working far away from any of the entry sites. It was such a bad day and I still was thinking it was a mind over matter thing until around 10pm when i broke down and took 2 pills. Life improved and because I'd relaxed with Shadow, I actually slept that night for 9 hours.

So Wednesday I stayed on top of the meds. Took 2 every 6 hours and life was good. Still tired to do dishes, but aside from that, things where as good as they can be. Now... here is the part where if you have a weak stomach, just scroll passed.

Yesterday the waterproof bandaids my dad had put on on Sunday after taking out the pump had been compromised. I peeled them off and decided to get a picture since I didn't when I'd had the pump taken out. I can't look at the close ups myself and that's my shoulder, so I won't be posting them. I'm glued together pretty much, no stitches. I'm actually really happy to not be stitched together. Stitches suck when they are in areas that you actually bend and use. the one along my neck is about 7" long. the second one is just short of 5". I can't turn my neck fully and it does cramp up from time to time. I don't notice as much as long as I keep up with the meds. I'm still swollen though from about my shoulder blade to my armpit.

About the meds... not only was I yelled at by The Doll for trying to go off them, but also the doctor office when I called to get a refill and told them what I'd tried to do. Apparently with the amount of damage done and how long this has been going on, I shouldn't be pushing to get off the drugs because it's not happening for a few weeks while my body adjusts. While I'm still a little numb from the pain pump, as it wears off, the nerves make themselves very much known. 

It's still not sunk in that I've had major surgery. I still have 2 weeks off and I'm going crazy. The doctor had really wanted me to take 4 weeks and I'm starting to think maybe I might have too. I have my follow up appointment on Tuesday and will find out when I can start physical therapy. I'm really scared of this recovery. I'm scared of the day that it will hit that this was major surgery and just what I'm facing to get back that 90% of function and strength. I'm really scared and it's not something I feel I can opening admit to family.

I've been blessed however. I've realized just how many friends I do truly have. While Bunny Boo had sent me a mountain of goodies, my work family have given loads of support and love as well.

This appeared on my doorstep on Saturday and made me bawl. They are lovely and still holding strong. THEY ARE SO PINK!!!! I really love them. My dear B has checked in with me almost daily as well as a few other of my work friends and of course The Doll. I've never felt so much love before from so many people. So many people have told me just how much I've helped them in the past and what it meant and have offered help and support. I've just been speechless and needless to say weepy from it all. Thank you to those who've been there pre and post op. Your all wonderful.

Luna B as been super supportive too, even if she doesn't understand why she can't sleep in her spot on my chest at night.
I'm not going to die but I've still got a road to recovery. :) I've seen just what I'll be gaining back once everything is settled. I can't wait to be covered in thread and paint again. I know it's coming soon. I know I'll be able to do illustration work again. Things will get better... they just suck right now. :P

Part one, Surgery Day

It's been a week today and I've been slow to do this post. It's been a bit of a rough week and things really haven't sunk in still. I'm going to try and not get to side tracked on this post. I'm warning now that I'm still on a lot of percacet and still in a lot of pain and not able to do much... or anything really :/

The adventure started at about 9:45 when we left for Seattle. I had to check in at 10:45 and I wanted to be early because things happen and traffic is unpredictable once you hit downtown. I brought my medical folder with me with directions and everything I'd been sent up until that point. I was told to check in at admitting, but when I got there, there was confusion. I wasn't even checked in yet and I was lost. After showing my the directions I'd been sent and about 20 minutes of the poor receptionist making phone calls between departments, things got sorted out and I was escorted to a room.

What had happened was that the nurse I'd done my per-registration interview with had set things up for me to be admitted into the hospital instead of going through day surgery. Normally, patients who are having TOS release go through day surgery and are then admitted after surgery for an over night stay. Because it was noted in my chart that I was a difficult patient and I'd also asked if it was ok to bring Korick along, she decided it would be helpful for me to know where I had a room. It was too. I knew I had a room to go back too. I could leave my things there instead of having Shadow and my mom cart them around and I could have a meltdown in private. I was really grateful for this because I was petrified to stay overnight at the hospital.

I had Shadow take this one after I'd changed. You can see how thrilled I am...

I was not in good shape. Because I'd been so stressed the weeks leading up to surgery with getting work settled and just trying to make it through every day things, my stomach had been horrible. I hadn't been eating much of anything for about 2 weeks except for coffee and crackers. I hadn't been sleeping on top of it. It was just not good. I really tried to eat the day before too, but my stomach wouldn't have it. Since I'd been admitted a bit backwards, there was blood work I had to do before hand which was not entered in the system for me to have done. Because of this, my 12:45 surgery start time was pushed back while labs where run. I'd not been eatting, I'd tried really hard to hydrate because I'm a hard stick and I was freaking out since my support team (Shadow and my mom) where having meltdowns of there own. By the time I was finally taken to the pre-op, I was sure I was going to die. I had a horrible migraine and hide under a pillow the whole time and was in tears begging for meds. I hate being medicated. It was bad, really bad.

The staff though, the nurses and doctors where wonderful considering I was in such bad shape. Dr. Johanson held my hand even and kept reminding me it was going to be better when this was all said and done. One of the nurses stayed with me until the anesthesia doctor came by to have me sign the last form and I was finally given something for the pain and nausea I was having. The staff kept telling me that despite the pain I was in, I had still been polite, but I honestly felt I hadn't been. I'm use to being chatty with medical people because I work in the field. Of course I was apologizing and chatting it up right until I was put under. That was the best 2 hours of sleep I'd had in about a month.

When I woke up in post op, I couldn't breath. I freaked out. Dr. Johanson rushed over and explained that some of the nerves that had run to the outside of my lungs had been within the bunch that had been crushed. my right arm was completely numbed during the surgery and I woke up with a pain pump in my shoulder. The first shot of morphine was given, but it was still hard to breath. Shot 2 was given and they started to wheel me back to my room.

I was bawling, still couldn't breath and in mass pain and confused. First words out of my mom's mouth are screaming I needed to eat. Shadow was laughing about morphine. Mom kept insisting I needed to eat and I finally yelled at her that I was far more concerned about being able to breath and for the pain to stop in my chest then about eating. Shot number 3 was given and the wonderful nurse brought me a cup of crushed ice. Shadow sat by me and tried to spoon feed me ice. That ice was amazing, I was horrible dehydrated by this point and it was nearly 6pm now. I was still hearing mom pushing food. I was grateful for Shadow at this point because he gave me the calm energy I needed right then to focus on.

To shut mom up, I had Shadow call in an order for mash potatoes and mushroom gravy. When it got to the room it sat there because I was bent on eating every last bit of that ice. Somewhere in there my dad had showed up, mom was still screaming about eating. Dad calmed her down finally and got her off my back finally. I finally got around to eating and even though they where fake potatoes, that gravy was amazing. Shadow ordered me applesauce at my dad's suggestion for later. People started leaving then. It was about 8pm. Shot 4 was given with my first 2 percacets. I was mostly comfortable at this point... but I did not sleep at all. It wasn't because people where in and out of my room, I just couldn't get comfy.

Taken at 3am about. You can tell one the right side of my face is really swollen. This is all from the nerves that had been crushed.
I hadn't realized just how many nerves had been affected. Dr. Johanson explained the next morning that a lot more had been pinned by the muscle then originally thought. There's a high chance that my asthma attacks, at least a good chunk, have been because of the crushed nerves. My throat swelling closed every now and then would also be from the nerves having those brief moments of getting released from the muscle. My migraines fall along the same track as the swelling. Over 10 years of pain and random conditions that no one could give me a straight answer on. One muscle was the cause of so many problems. I still  have no idea what I would have done if not for The Doll pushing me to see this doctor.

Let's call this part one. Next will be life at home. Hopefully, not as huge a thing to read.

Sunday, September 15, 2013

mini post surgery update

I've survived... mostly. I will give the full gory details in a couple days when I'm not so medicated/in pain/actually know where I am. I've been laying low since released late Friday morning.

In other news, I forgot to put my Etsy shop in vacation mode and one of my dolls sold on Friday the 13th! She's one of my older ones too and one of my favorites! So while I'm sad to see her go, I'm super excited she'll have a new home! I had a bad feeling this would happen too!!! I'll have to figure out a way to get her dropped off and to sew her a quick blanket for traveling to North Dakota.

Miss Casey will be on a trip in the next couple of days! Thank goodness i stocked up on shipping supplies in advance!

Tuesday, September 3, 2013

Permission to not be ok

So last week I had a very high pain day. I just couldn't seem to get it under control and I was way stressed by it. I was shattered and of course I was at work. Out of frustration, I emailed the Doll asking for help. It just wasn't clicking with why all the sudden, everything hurt so so much.

She emailed me back quickly. I can't even remember what she had emailed, but it made me run down to her office and give her a big hug. Of course... I started crying again. The Doll sat and listened but then she told me the things I truly needed to hear at that moment. She told me that I needed to realize I have a condition that causes chronic pain. I will have good days and I will have bad ones. On those bad days, I need to celebrate the little achievements. She told me it was ok to be in pain. I've been suffering for years and just delt with it, but now my body had an answer. It had been given permission to be hurt.

I had another friend that told me I hide my pain well. She'd had no idea until I'd come back to the billing office just shattered. It was so hard to to admit it. I've been so lucky and so fortunate to have people that truly care. I've had a few that... I could do without, but the ones that have been there and have listened and supported and just ask how I'm doing. That means so much. I know I'm down to the week mark until surgery. I really really really can not wait. I know recovery will suck. I know I may well come back to chaos when I come back, but I know I'll feel better then I have in years. I truly can't believe just how much this has effected me, down to the migraines I get.

I promise this blog will get back to the artsy stuff. In fact I plan on trying as soon as I'm able to hold a pencil or even a damn crayon. Little Nightengale will come back, but as a much stronger person.

Sunday, August 25, 2013

Another casulaty of TOS

Good night sweet princess. We will be harvesting our mass tomato crop soon.
 The other day I came to the conclusion that my 3D DS was the latest victim of my TOS. It was on of the things I'd held on to, 'played through the pain' on. I want my Harvest Moon damn it. I'm pregnant with Allen's baby and I'm harvesting 5 star crops. This is so uncool. At least I'm stopping before I drop her in the bathtub or on a hard floor. (thank god for insurance but the thought of all that lost data!!!)

These leaves my phone, kindle and most of the use of my Wii. For the most part the laptop and computer are doable as long as I wear my brace/glove. Still by the end of the day of work, I don't even want to bother with my laptop. My phone and kindle are borderline right now, but I'll fight to use them. It's just limited. My Wii I'm to scared of putting the remote through the tv. I've been playing a lot of Samurai Warriors because it requires the pro controller. It's thick enough and doesn't require me to hold on to it while flailing around.

I'm still going crazy though. 18 days to go. My work check list keeps growing and I'm about ready to scream. I've been thankful for the Doll. Without her, I'd have gone mad by now. I'm not getting support from my lead and I almost feel like this is payback for going above her when things weren't getting done. My PettiePet comes back tomorrow and I plan on having a heart to heart with her about the whole situation and my concerns for while I'm gone.

Saturday, August 17, 2013

Thoracic Outlet Syndrome

The other night when I posted I realized a couple things. For one, the pain med I'm on made me a little weird the first few days of taking it. Second is that I was a massive emotional mess and exhausted beyond belief. The good news is I've slept and ate for most of today and spent it snuggled with my bear. I don't like taking stuff for pain like that. Though with how I've been lately, I needed something. This whole thing has made me see just how high my pain tolerance is and how I do react to it when my mind is not actually feeling it. I wait on taking them until later in the day. I'm stubborn like that and still kind of hope it's not that bad but i know it is.

So what is going on with me? Thoracic outlet syndrome is when the scalene muscles in the neck compress the nerves and blood vessels that run to your arm. It can be triggered by physical trauma. Some times people have an extra rib by their collar bone that can cause it. Symptoms can mimic carpel tunnel. Usually, people don't know they have until much later down the road, around 5 years. The only proven treatment is to have the scalene muscles removed. They muscles are kind of like your appendix, it's one of those parts that we needed a long time ago, but over the course of evolution we've lost the need for it. 

When this all started, I'd get pain mostly in my pinky and ring finger. I'd start drawing and the pain would start. After 2 quarters of dealing with it I had carpel tunnel release surgery done, but was still dealing with pain. I just let it go and figured that be as good as it got. A few months later, I was in a car accident with my mom. While we weren't hurt, child safety restraint did it's job. I did still hit the window though and the seat belt really dug into my neck/should area.

So I just kind of dealt with it from there. I gave up doing illustration work except for very short stints of it. I use to hours working on a piece. When that stopped, I went to fabric work. It was easier to work with scissors and I like the textures and colors. All was mostly well until about a year ago, when I started doing a lot more coding work with my job. I've lived in a compression glove and a wrist brace for about 6 months now.

TOS is one of those things that doens't get diagnosed right away. People usually bounce from doctor to doctor trying to get a diagnosis, which is what I did. Thankfully, instead of taking years between doctors and physical therapy and massage, I've been lucky enough to have a friend who'd been through this. She was telling me from the first day I came to work in a brace that she didn't think it was a recurrence of carpel tunnel. Had she not been so insistent and spoke up again after my ortho doctor, I would have given up.

Of course now, after the official diagnosis and having a 4 hour stent without pain, I can see just how much it's effected life. I've been drinking from lidded cups for about a year now. My hand writing has gone to shit. That part I didn't even notice until this week when I was struggling to write a card out of a patient legibly. I really can't hold writing utensils anymore... or chopsticks... or much of anything. When I think about it though, I really didn't start having serious problems until the last 6 months or so. Or at least didn't except I had a problem until about then. I have good friends and work with good doctors. 

I'm looking forward to burning my wrist braces though. Wearing them every day for the last 6 months sucks and they are ugly. Really ugly. Maybe I'll start a campaign to make more stylish braces in fun colors, but after everything settles and I can draw again.

Thursday, August 15, 2013

Short rambling update

I know, another long stint with no update.

I had my appointment with the vascular doctor on last Tuesday. My day was 2 appointments. The first was a neuro block injection. While the doctor was super nice and Nightmare before Christmas fan and knew about build-a-bears, but getting an injection in your neck sucks no matter how nice the doctor is. I was still pretty shaken up over the shot so I didn’t notice much of anything at first. By the time I’d gotten to my second appointment with the vascular doctor and was in the room with him, I noticed just what an improvement there was. It then struck me that just a short time before that I had been able to fill out paperwork with a stick pen with no brace. 

So… I broke down on the poor guy right there. It was the first time in about 10 years I haven’t been in some level of pain. After a few more tests, Dr. Johanson had determined I’ve lost about 70% of the strength/use of my hand. I’m borderline disabled. I’ve always just kind of put up with it and done what I’ve needed to do despite pain and discomfort, but hearing numbers put to it was really frightening and eye opening. I’m so mad at myself for waiting this long. I might not get full sensation back in my finger tips. I currently don’t feel hot or cold well. 

So I have Thoracic Outlet Syndrome and only have 2 options at this point for treatment. The first is botox injections. Insurance doesn’t cover them and it would be almost $900 every 3 months. The second is surgery which is 90% effective and covered by insurance. I’m going with the for sure method.

I’m set up for surgery next month. Aside from being terrified of staying in the hospital overnight, I’m actually doing really well with this. Well… there is the whole stress with work because I’m sure I’m going to come back to a mess after 3 weeks out. I know this will be for the best though. I can sew again and paint and draw. If it wasn’t for my friendy at work, I think I would have given up trying to find an answer.

I know this is rambling and quick, but typing has been hard on me after doing it all day at work. The good news is that I finally broke down and asked for something for pain. I’m not so cranky now! While I have a high tolerance, I really didn’t realize how high until that injection and the pain was gone. I’m really looking forward to when it’s gone for good.

Saturday, July 6, 2013

Lolita Bunny

I couldn't take it anymore. I had to try. I'm not seeing the next specialist until next month (-_-) but I've wanted to make this for a few weeks now. So here it is, Sakura Bunny in her new lolita dress.

Ignore the bunny slippers... she does not have proper mary janes yet
I'm not going to lie, when I first started sewing the skirt hem, it hurt like hell. I about gave up right there. I broke down and wore my brace and compression glove. It helped but I'm feeling it now. Totally worth it though. I love the dress. I used my good lace (no ita lace here!!!) and my really good fabric. I actually redid the top because I realized to late the skirt and top of the jumper where 2 different kinds of fabric. I might redo her bow, but for now I'm liking it.

Thursday, June 27, 2013


MRI came back clear. I've been referred to a vascular specialist, but this one specializes in TOS (thoracic outlet syndrome). He can't see me until August. So I've been managing while being a basket case at the same time. Don't ask how that works. Up until Tuesday, shortly before noon, I was ready to beat people. Between the stress of work and then with my arm, I was done. I ran out of the office on my lunch break and, while looking both ways to cross the street, managed to sprain my ankle. It's always comforting with your doctor is mortified by the amount of bruising you have and your ability to laugh at the amount of pain your in.

So I'm in a boot, sleeping with heat for both my shoulder and for my sinuses. At that moment I fell out of my shoes though, after I started to wonder about people flying out of there shoes when hit by a car, I laughed. Not from the pain either, but just because I realized the cosmos was telling me I need to let the things I can't help go. People suck and they will drain your sparkle. Which has been happening a lot lately. I know things will work out in the end. :)

Though the need to draw and cut fabric again is pulling at me and I'm on pain meds currently because of my ankle. I might try to finish a few things this weekend.

Wednesday, June 5, 2013

Back from the abyss

I've been in hiding since my last post. I've been in a depression that I've had a hard time shaking. After meeting with the ortho doctor and having an EMG run on my arm, they have been unable to find anything wrong. He suggested going back to my primary care doctor, which I refuse to do because her bed side manner stinks, or to go to a nuero doctor or a different hand doctor. After reading a rather defeated post of mine on bookface regarding the situation, a friend contacted me with a possible culprit and new specialist to try.

I'm fortunate my insurance doesn't require referrals and seeing someone on the campus I work at helps me not miss full days of work and people in my office highly recommend them. Not only because they refer to us, but because my coworkers have personally been patients of them. My dear Doll was kind enough to talk me off the ledge, and point me in the deriction of a neurologist who is wonderful.

I met with Dr. Lazar yesterday. after explaining the pain and other symptoms, he gave me 2 possible answers. There is either a pinched nerve in my neck or it's Thoracic Outlet Syndrome (TOS). He recommended an MRI to see if it is the pinched nerve and assured me that if it is, he can fix it. If the test comes back negative, then there is a high probability that it's TOS and he would refere me to another doctor that specializes in fixing it. TOS would require surgery and the pinched nerve might depending on how bad. He kept assuring me that it wasn't an end all diagnosis and I told him at this point, I've been in pain for almost 10 years and that it might actually be something and not just in my head.

I'm scheduled next Tuesday for the MRI and then a follow up with Dr. Lazar on Friday the same week. The thought that there might actually be a solution close has helped me a lot. After the last specialist, no matter how cute he was, pretty much threw his hands in the air, I was beyond crushed. Last weekend I cut a 9" x 12" piece of fabric and was in pain. Today I hauled luggage and groceries and am in pain. I've done my best to keep the smile and hide the pain, but there are days it's just to bad that I can't do anything.

The Doll has been wonderful about giving me tips for helping alleviate it. I've been very thankful to have such wonderful friends. They given me help and support when I'd pretty much given up on myself. If it wasn't for them, I don't think I'd finally broken down and gone to see someone. So I'm hoping I can get back to painting and drawing again. I miss my pencils. Heck! I'd settle for being able to use chop sticks through a dinner with my Shadow right now!

I will try and do better about keeping people posted. :)

Monday, May 6, 2013

Fallen Off The Map

Dispite popular belief, I am still alive. Unfortunatly, I haven't been able to do much of anything art wise. In fact, the last time I was able to hold a paint brush was about 6 months ago. Now, cutting fabric is a challenge with or without a brace and compression glove. So things are on hold. I see a specialist tomorrow to find out why the pain has gotten so bad. This is the worst it's ever been. Typing more then needed about kills me anymore let alone play a game or even hold my kindle.

I've done the stretching, the resting and the braces. While I think part of it is carpel tunnel coming back to huant me, there is something way different about this time around. I really didn't even start talking about it to anyone until about a week ago. I've been in denial. Now I can't draw, sew, paint or really do much of anything with out being in pain for a long while after. I want my life back and I thinks that's really the only reason I pushed myself to go to the doctor (I HATE being a patient!!!)

So now it's the wait and see game. I'll be surprized if they tell me there is a fix outside of surgery. Cordizone shots have not worked in the past. Surgery the first time around 10 years ago didn't do much. I also think that first doctor was a quack and was with Group Death. So here's hoping this can be fixed and I can go back to being covered in paint and thread and have the strenght to play with clay again. Because this blows.

Wednesday, January 9, 2013

Survived the Holidays

It's not that I haven't been busy, because I have. Or that I haven't been crafty, because I have been more lately. After the onslaught of the holidays and family and now being sick AGAIN!!! I'm just now getting back to reality. So, some updates.
My beloved Sally doll was sold recently and will be going to a lovely collector of wonderfully offbeat things. While I'm sad to see her go but, I'm very happy to know she's going to a home where she will be appricated.
I've been making a lot of adult sized sleepers lately for myself. I can't help it! I love them! I'm all warm and cozy! After playing with the pattern I'm at a point where I can alter other aspects of it now. My next step will be to add footies to them and then a dropseat. While this pattern is fairly easy, once I make these modifactions I'd like to look at doing custom orders for people. I know there is a market for adults that want these types of jammies and what's out there doesn't always cator to people with more curves. When you do find one that will work, often the fabric is just... well it sucks.
My most recent pair, which is currently my favorite, is a nerdy Minnie Mouse print. My mom happened to find it and talked me out of a My Little Pony print. This one was much more me and to cute to pass up. Plus I got a killer deal on it. I plan on making myself one more pair in all black because over the holidays, my sister was calling me a cutsy Sith. Did I mention this pattern comes with a hood?! It's like the bestest thing ever!!! Since brown isn't one of my colors, it looks like I'll be on the Dark Side even though it goes against everything I believe. :P
Image from Joanns
Happy Crafting my friends. :)