Trips and Breaks. Loss and Fakes.

It’s been almost a week since I’ve been back from my trip and I apologize for not blogging about it sooner or keeping in touch with some of you. I’ve been dead tired and and not only physically but emotionally drained. :/

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Let’s start with the trip shall we? Last Wednesday my friend and I drove from LA to Oakland for a show. It’s been a good ten years since I’ve been to the bay area and it’s been a while since I’ve gone on a good roadtrip so needless to say I was stoked. The drive took us about 5 1/2 hours with only two stops. I have a really bad bladder and it’s something I am embarrassed to talk about with others and I hate that when I have to go I have to go! Doctors said it’s because of the AMC and weak muscles. I’ve been on medications for it but it doesn’t really help too much. I never know when I have to go - it can come out of nowhere. And when it does I usually have about 5 minutes to get to a bathroom. It sucks not to mention extremely embarrassing when I’m traveling with friends. So 12 minutes into the drive we had to stop so I could use the restroom :/ Not fun.

Once we got back on the road I was good. We did stop 40 minutes outside of our destination to stretch and use the restroom again. I brought not only my wheelchair but my walker on this trip as well. I can’t really use my walker for long distances because I get tired but in situations where the urgent restroom visits come up the walker can prove handy and a lot quicker than putting my wheelchair together. For the most part I like to think I’m not that self conscious of myself or my disability - at least when I’m in my chair. I brush off and pay no attention to the stares and whispers. I wish I could say the same when I use my walker in public though. That’s another reason I don’t like using it out of the house. I already can’t walk that fast and I walk funny so people definitely stare. It makes me uncomfortable. On my way out of the bathroom at the 7 Eleven I walked past a long line of customers at the register. Pretty much each one of them looked at me strangely like they had never seen someone use a walker before. It sucked.

When we finally got to the hotel and into our room I was a bit dissappointed. Not only was the accessible room a lot smaller than I imagined (my wheelchair barely fit in the room!) but it was also a mess! The beds weren’t made and the bathroom was dirty. Now this wasn’t a 5 star hotel but it also wasn’t a cheap motel either. I went to the front desk to let them know and they said they could offer me another room. Only problem was the dirty room was the only accessible room in the hotel! I told them I needed that room so we had to wait 30 minutes until they cleaned it.

Once in our room we relaxed from the long drive since we had a few hours to spare before the show started. So the venue wasn’t exactly in the safest of areas and my friends had planned on drinking so it was decided we’d take a taxi to a from since the venue was only a few miles away.

If there’s anything I learned from this trip it’s that I fucking hate taxis!

I called quite a few taxi services asking for an accessible taxi for my wheelchair. Every company said they either didn’t have a wheelchair accessible taxi or they had one but it wasn’t available and I should have called a week in advance to reserve it. Then they seemed to be confused by the notion that my wheelchair wasn’t a folding (standard hospital like) chair. I told them it comes apart and can fit in the trunk but that just seemed to confuse them more. After getting nowhere I just asked for a regular taxi and decided to deal with it when they got there.

The taxi came, actually two (there were some miscommunications) and my friend and I got yelled at for calling more than one taxi service. Blah. Rude. It took a good 15 minutes to get my chair into the taxi and might I mention that while we were getting my chair into the taxi the driver had the meter running for the fare. So we got to pay $30 for a 5 minute taxi ride! Gahhh.

Once at the venue things were better. Except for the part where the taxi dropped me off in front of the venue and everyone got to watch me get out and watch my chair get put together. Just a little awkward. Anyways I was quite pleased with the accessible seating at elevators as well as the staff at the venue. Everyone was really friendly. Not only that but I was among one of the most diverse group of people in one place at one time that you could ever imagine. There was a certain comfort in the openess of everyone and the different subcultures represented. For once in my life I actually felt normal. If only the rest of the world was as open minded as those concertgoers.

The show ended and the sucky part was still to come. The taxi ride back to the hotel. Once again we had trouble getting a taxi to take my chair. When we finally found a guy things seemed good and he seemed nice enough. Of course I didn’t like the fact again that the meter was running while we were getting my chair in! As we got closer to the hotel I watched the fare go past the $30 mark (which what it had costed us to get up there) and into the $40 range - even though of course in my opinion the ride back seemed to take less time. When we got to the hotel the driver helped me take my wheelchair out of the cab. I knew I had to give him a good tip since he helped me but I was already not happy about the fare alone. I ended up giving him a $15 tip and he proceeded to complain that he wanted $20 because he had helped me get my wheelchair out. I told him that was all I had. He went on about how he saved me a lot of money because an accessible taxi would’ve cost me $75 and that he should get a $20 tip because he hurt his back in the process of lifting my wheelchair! At this point he was just pissing me off. I myself can lift my chair - even if it is barely - but I can lift it weak muscles, disability and all. It’s a light weight chair. You Mr. Taxi Man, who seems to be in your 30’s and completely able bodied are telling me I should give you more money because you hurt your back lifting a chair that weighs very little?! Yeah I knew he was trying to rip me off and take advantage of me. I was so pissed. Yeah I had more money but I wasn’t gonna give it to him after the way he was acting. And I sure as hell wasn’t gonna spend over $60 on a 5 minute taxi ride! The sad thing is I think he would’ve pushed me even more or who knows even maybe tried to rob me it it wasn’t for the fact that the hotel security was standing right there and when he seen the driver hassling me he stepped in.

I’m sure you’re asking where my friend was? Well he went to the after party and I’m a grandma and wanted to go back to the hotel. Plus we didn’t know where the location was and I didn’t wanna risk it being a place with stairs and me not being able to get it. I decided to go back to the hotel. I decided to take the cab. But after that night I will never take a fucking taxi again!

At least we got to sleep in the next morning since we had a late check out. Because of the long drive home we couldn’t do much sight seeing but we were able to stop at a record store. I love music and I love record stores. I could spend hours there just looking through everything. But in actuality I can’t spend much time at all there :( Most records are stacked high and not reachable from my wheelchair. I usually have to stand and look through what I want except I can only do this for so long because I get tired :/ It sucks.

The drive home was quiet. Maybe it was exhaustion, maybe it was frustration. All I know is it was the longest six hours I’ve ever spent in a car with someone.

I’m not saying the trip was bad. It definitely had it’s good parts and I’m glad I got to spend time with friend. It’s just the last half of it that kinda sucked. And did I mention that I hate taxis?!

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So I was pooped for about two days after I got back so sorry to anyone who’s messaged me and I haven’t responded. Oh yeah I forgot to mention that I’m super bummed I didn’t get to meet MollieMonster on my trip :( Sucks things didn’t work out. Maybe next time!

I’ve finally caught up with life and feel well rested. Things were good today, until a few hours ago. Remember the guy I went out with that ditched me with no explanation a few months back that I mentioned? Well turns out the reason he stopped seeing me was because he was dating someone else at the same time as me!!!! Even after I asked him if he was seeing other people (because I knew we weren’t exclusive) and he claimed he wasn’t and he only wanted to see me and that he planned on us being exclusive. Yeah well turns out he’s a liar and a jerk. Pissed me off and bummed me out for about an hour but I’m over it ‘cuz he’s a piece of shit liar with no balls and I feel sorry for the girl he’s with now.

Well that’s what’s going on in my life. I hate taxis. Guys are douchebags. The end.

Be Calm

Gahhh. This is going on the 2nd week my neck and shoulder have been in pain. I don’t know if I have a pinched nerve or what?

The last week has been really stressful for reasons I can’t really blog about. So yesterday I went to do some retail therapy at the mall and everyone was nicer than usual. The guy at the bakery kept asking me if I needed any help reaching anything. Then the girl at Hot Topic (yes I know make fun of me) read every vinyl title for me because they were stacked on a high shelf. There was like 50 + vinyl. I told her she didn’t have to but she said she didn’t mind. I thought that was cool of her. Of course I ended up buying one because I would’ve felt really bad not buying anything after she did that for me. I got Blink 182’s “The Mark, Tom, and Travis Show,”

Then there’s puppies!! Whenever I’m super stressed or sad I like going to the pet store and seeing all the puppies. (I know Chelz, yell at me. I support shelters though). They had some of the puppies out to play with in a pen. I stood up holding on to my wheelchair so that I could pet them. Unfortunately my arms were too short and I couldn’t reach :( I watched as everyone else walked by and pet the puppies. Then one of the workers came over and picked up one of the puppies so I could pet. After a few minutes I got tired of standing and had to sit back down in my wheelchair. He then asked if I wanted to hold her? So I did and she was wagging her tail and giving me kisses while the worker and I talked about superheroes and dogs. He was really nice and it was nice of him to do that. Puppies make me happy.

I know I still need to post the pictures from my tattoo session on here, I’ve just been so stressed :/ Hopefully soon though.

So looking forward to my road trip in a couple weeks! Wish this pain would go away. If it’s not one thing it’s another….

Losing sleep

I finally went to the back doctor today. Since my insurance is stupid and won’t approve the injections I need (it’s been a year and we’ve submitted the paperwork 3 times and every time it got denied!) I asked for a cortisone shot just for the moment. The needle was huge and it was in my back. It didn’t hurt as much as I thought it would though. Not that it didn’t hurt at all because believe me it did! I just thought it was gonna be worse.

I’ve always had this anxiety about needles and hate them which is kind of funny considering I’m getting tattooed again tomorrow.

Hopefully the shot helps. The area’s a little sore but I feel ok. Though for the past two days my neck and shoulders have been really bothering me which sucks. I’m usually never in pain in those parts of my body. Weird.

So my mom hurt her hand really bad and it’s been hard for her to drive and lift my wheelchair as of late. I feel really really bad that I’m not able to drive to help out and can’t do more for her :( she does everything for me and takes me everywhere and I see how much pain she’s been in the last few days and I just feel so bad :/ I feel useless and it sucks.

Too excited for tomorrow that I can’t sleep! Need sleep but I just can’t.

Bleh

We had an earthquake this morning! 4.7 shook my bed. It was fun.

Wasn’t happy I was woken up by it at 6 in the morning though. Also wasn’t happy I woke up with a sore throat and a cough :/ I really hope I’m not catching something :( I have a lot of things to get done this week and a meeting with a client on Wednesday. I took some cough medicine and went back to sleep.

Tonight was really bad pain wise :/ my back, hip and leg were killing me. It jumped from its usual 6 to like a 9 in minutes. I took a ibuprofen, put a pain patch on and tried to massage it. I couldn’t move for hours. Then it got to the point where it even hurt sitting down at my desk :/ definitely hurt when I moved or walked around. There was no winning this one. I moved to the living room and hoped a brief walk and some stretching would help. Only felt worse. I sat down and watched tv with my sister and after a few minutes the pain intensified even more. I had to stand up, bend over as far as I could while holding on to my walker and dig my thumb into the spot in my back. I stayed like this for a few minutes until my legs started to weaken. The rest of the night I had to keep my hands pressed into my back to relieve some pressure and pain. Of course my arm would start to get tired and hurt so I had to alternate even with that. Lovely Arthrogryposis, you sure like giving me zero pain free days don’t you? And what did I do to deserve this tonight?! I’d have to say this is one of my worser pain days. I literally wanted to climb into bed in the fetal position and not move while I cried - if I could indeed climb into the fetal position which I can’t. Had to wait for the ibuprofen to wear off and finally took a Vicodin 40 minutes ago. It’s kicked in and at least it’s helping a little.

As I was in pain tonight my sister sat there and watched me and I can’t help but wonder whether she believes me or not? I mean she didn’t offer her assistance or even ask what’s wrong. And all I get from my mom is a “well you need to move around more!” whenever I’m in pain. It’s pointless to tell them I’m in pain anymore ‘cuz I don’t think they believe me, and even if they do they definitely don’t believe or understand the extent of the pain I’m in.

Oh yeah there goes the Vicodin. That’s nice. Too bad it’s only probably last 20 more minutes :/

Do dating sites have standard pick up lines guys can choose from to send to girls if they don’t know what to say? Can any dudes out there tell me if this is an option? I swear they do! I get the same exact 4-5 lines from random guys every day! Like really? You’re that unsure of what to say to me you have to send a stupid cheesy pick up line?! A simple hello would suffice.

Blah my arm’s getting tired from typing on my iPad so I better stop this here. Hope the pain’s gone torn the night, as also really hope I don’t get sick.

Glad he deleted his profile. Shouldn’t have been stalking him anyways, only would’ve ended up depressed.

Life’s ok. Getting lots of design work done. Need to draw more. I need more hours in the day to get more stuff done. Before I know it the day has already past.

My toes have been bothering me.

My lower back hurt today.

Did anyone see the past episode of Grey’s Anatomy where there’s an Arthrogryposis storyline?!

I need something epic to happen. Routine bores me.

Here’s my first of many videos I will be doing. I apologize for my awkwardness. Hope you enjoy and send me more questions so I can make another one! :)

Reblog if you’d like :)

If you haven’t seen or read already, there are new articles on Arthrogryposis by Dr. Judith Hall that have just been published. If you don’t wanna read through all of them here are some of the things I gathered that specifically pertain to my case:

- Small dimples over affected joints. Makes sense. The area where I have a lot of my back/hip pain has a huge crease or I guess you could say dimple over it.

- Arthritis developing in mid 20’s. Thank you! While they state there are no major problems occurring for those with AMC later in life they do mention that one of the few things that can occur is Arthritis. Um I know a lot of my Tumblr AMC friends and myself included would say this isn’t a tiny problem for us! While I can see how a doctor/professional can see how Arthritis is not major - us, the ones who have to live with it, well it kind of is a big deal! It’s a pain in the ass always hurting. I’d say that’s kind of a big uncomfortable problem.

- Left side and lower limbs are at greater risk of being affected. While all four of my limbs are affected, my weaker side does happen to be my life side.

- Mobius syndrome/decreased facial movement. In my case partial facial paralysis on the left side.

Of course the article mentions the typical club feet, dislocated hips, scoliosis, etc. etc. I have to say even though it took years I’m glad there is new info on this - though I do think it does tend to focus on children and newborns and the development or Athrogryposis. I wish there was a study and more information for adults living with AMC. Of course even if that does happen in the future it’ll probably be a long time coming since these articles took over 35 + years of collecting data :/

2am & Pain

There comes a point in the night where you ask yourself “Do I want to stay up miserable in dull pain and rough it out?” Or “Do I want to do some more damage to my liver and drug myself up?”

It’s 2 am and I don’t feel like laying awake in bed all night due to the dull aches and throbbing I’m experiencing on the left side of my body. It starts from my lower back all the way down to my hip and the side of my leg just before my knee.

Why is my pain being annoying tonight? Well it could be a number of reasons:

1. When getting out of my friend’s SUV last night I landed pretty hard on the ground since I’m short and his car is really high for me so in order to get out I sort of have to jump.

2. Soreness from earlier when the car jerked so we could avoid an accident.

3. My usual annoying hip and lower back pain caused by who knows what?

4. All of the above.

I’ve already taken two Vicodin today because of the stupid pain. Thought that would be enough to get me through until tomorrow but my body hates me and won’t let me sleep. So I’m left with the following decisions:

A. Do nothing about it and hope I fall asleep soon.

B, Put some sort of pain patch or massage the area.

Or

C. Take another Vicodin or some sort of pain killer.

I already know my liver is fucked. I chose not to be miserable. But I only chose not to take 3 Vicodin within an 8 hour period. Instead I opted for patching of my whole leg, hip and back as we’ll as taking two slightly duller painkillers.

Here’s to hoping I fall asleep soon and tomorrow’s a better day.