Let me start off by saying I'm extremely pissed off and stressed. My last post was about being auto-enrolled in Medicare. This post will be a continuation of the garbage that we call our heath care system. Harsh language will definitely be used.
Health care is a hot-button issue in this country and if you're unlucky enough to have a disability then it's even harder to understand and obtain than the general masses. Before receiving disability benefits I was all set with MassHealth coverage which was incredible and did everything I needed it too. Now fast-forward 24 months to where they basically force you to have medicare which surprise surprise I now need to pay a premium which is over $100 a month. Now let me just explain this a little better, I am disabled. I do not have a job currently because I can not work a full-time or even a part-time job without problems. This means that my only income is from disability and it is not a lot of money. In addition to paying bills and a general cost of living they now expect me to pay over $100 for health care which I was receiving for free. In addition to this bullshit, I now have to be enrolled in a medicare drug plan that's gonna cost me money monthly as well as an annual deductible. I'm fucking pissed and I think I have a huge right to be. I have specialists and a lot of prescriptions that I now have to hope are covered under this bullshit plan. All of it really makes me want to fucking puke. What am I supposed to do? How do they truly expect us to live on $715 a month now minus $121.80 and another $32.50 plus actually paying my prescriptions in addition to all of my bills. I can set-up a GoFundMe but honestly why should it be your responsibility to pay my bills. I would feel so defeated to ask for such help. I already feel super defeated and that's not fair. I didn't ask for any of this. I would give anything for this to not be my situation. I really don't know what to do.
Leave me suggestions if you have experience with any of this or maybe some anxiety/stress techniques because I can feel it deep down in my chest and it fucking sucks.
No picture tonight as I'm just too upset about all of this to even know if I use proper grammar or spelling. I have that like seeing red anger happening.
Hey faithful followers(ha)! I bet you're all having a delightfully sweaty summer. The sky has been blue, Suicide Squad released and the state auto enrolled me in Medicare that I have to pay over $100 a month for. What's not to love?
First, let me talk about this Medicare shit and just get it off my chest. Now if any of you know me personally which I'm guessing I'm probably just writing this blog to my mom, you'll know that I am disabled officially according to our state and federal government. That means they have poured through my medical records, spoke to my doctors, looked at my prognosis for the future and decided that I can not work enough to support myself so I am able to get money monthly to help. Fine.Great.Awesome. I'm happy to have the money after going through so many jobs I was unable to keep because of my condition. I am in no way bitching about that. What I am bitching about is the fact that because I receive this help I am apparently being enrolled in Medicare parts A,B,C,and D without my consent. After being on the phone for almost 4 hours the other day with not only Social Security who could tell me nothing but also MassHealth and Silver Script. I just don't understand it, it's fucking confusing. I can't even figure it out so I can't imagine how they expect elderly people to figure it all out. The best part is that I have MassHealth which covers everything I need and I pay $0 a month for it so why do I need part B that costs $121.80? This is the great mystery and headache so far of my summer. I'm really hoping I can get it all figured out fairly quickly before they start taking the money right out of my disability check which let me assure you is already low to begin with.
Now on to the good stuff. Anyone who really truly knows me knows that I live for Disney. Disney everything...movies,merch,books,vacations and really anything with Mickey Mouse. That said, Disney World is naturally my favorite place on Earth that I've been to up to this point in my life. I only recently got to experience WDW for the first time as an adult. I don't have fond memories of me as a child riding the carousel or meeting Cinderella. My introduction to Disney World was thanks to my parents when I was 24. What I do have because of them is fond memories of seeing the castle for the first time, enjoying everything and remembering everything. Being able to make a full day in the parks and not have a temper tantrum and having a beer in Epcot. Since then, I've made it a point to try and go as many times as I could afford because I'm hopelessly addicted. I was lucky enough to go with my mom in 2013 and again with my family in 2015. I am so freaking excited because in a little over a month I get to go back to the place I feel most at home. It's weird because I'm sure that many of you probably don't feel the same way I do or maybe you do. I honestly can't explain the feeling I get when I go but it's what I expect magic is like. It's corny I know but we could all use some corny in our lives these days and if for just one week I can feel like a princess or experience some magical memories with the people I love then I am totally happy being corny for the rest of my existence.
So as I'm continuing my Disney countdown over here(38 days!!!!!!!) I urge you guys to take some time out of your stress filled days and make some magic happen however you can. Thanks again for checking out my blog and continue to check back for updates and new entries!
P.S. I bet my mom doesn't even read this garbage!
Here's a big hint for my Mickey's Not So Scary Halloween Party and NYCC cosplay! If you don't know what it is then go google right now!
Through out my 28 years on this planet I've worked a lot of jobs,most of them retail. Most of them garbage and very inconvenient and less than sympathetic/caring to my special case. Working is hard for me, I can't stand for long periods of time...I need to use the bathroom like right fucking now or have frequent doctor's appointments. It becomes a problem for most employers to deal with me and on one hand I don't blame them but at the same time I can't help it. This is the life I live and while disability is helpful it will never allow me to live a normal functioning life.
This past week I made the decision to leave my job of 3 years( only really worked for maybe 1 1/2 though). I realized that the only jobs I'm really qualified to do are the jobs that readily available but are like Kryptonite for my well-being. To the people who may be saying "Well Alissa, are you sure you're not just lazy?" I will say a big fuck you respectfully, until you live a day or two in my body you don't know anything unless you actually have Crohn's, fibro etc etc. I would give a lot to be able to do a normal life, work a normal soul-crushing job, have a too expensive too small apartment. I would love it. Just to have job security would be amazing.
So now I find myself once again jobless and wondering how I'm going to pay my bills because they very much exist. What do I do? Right now I really don't know but to say I'm not worried would be a lie. I'm extremely worried. If I ever needed the universe to come through for me it would be now. So universe, if you're reading this please give me a win because I really need it right now. My skills are writing and generally being awesome/charming and plenty humble. Thanks.
Please check out my newest review over at ComicBuzz
P.S I'm on a diet and this is life now but I actually am enjoying it. I didn't give up soda though....cry about it.
Pokemon trainers, it's time to catch them all...by walking around outside? It's true. In the midst of Pokemon's 20th anniversary, the game company Niantic is making our childhood dreams come true by releasing Pokemon Go for ios and Android. The game is simple, using our phone's GPS and AR abilities we can walk around outside and catch Pokemon!
The amount of people playing the game is kind of shocking. I've seen hordes of people walking around everywhere including outside of our house at 2am. I'm a big fan of the concept of getting people outside and walking around. I've seen people being more social just in the past few days since the game released than I have in years. It's a phenomenon, nerds are meeting up and even getting dates because of the game. I think it's awesome and I hope you're all playing whether to get some exercise or even just for the nostalgia value. I will say that even while playing you should still be paying attention to your surroundings and obeying laws, in other words don't fucking play the game while driving and don't trespass. You'll end up ruining it for everyone. I've been too busy playing this to blog and that's actually great. I walked 4 miles today and while it was tiring it was also super rewarding. I adventured with someone I just met to catch Pokemon and while that might not be as much as some of you have been doing walking wise, for me it was a step in the right direction.
Since my last blog my first review has been posted on Comic Buzz! I encourage you guys to check it out and the site, I'll link it below! I actually have to get back to a review I'm writing right now. Thanks for reading and please stay safe on your journey to becoming a Pokemon Master!
Currently listening to: Blink-182 California
Here's my starter Squirtle and my foot again for you foot fetishists.
Everything is coming up Milhouse lately. I'm constantly knocking on wood in fear that it's all going to fall over like a Jenga tower. Me and the Universe don't really have a great track record. I'm always trying to be nice and kind and a good person and the Universe is like "Hey lol at your shitty attempts to get your life together. Here's some unexpected trash you have to deal with. Have fun." So I'm going to ride this wave of mild happiness until I get eaten by a shark.
Motivation is so tough for me to feel in the past couple years. It could be the pills I take. It could be my own laziness or maybe something else completely. Whatever it is, it's really fucked with my ability to get anywhere in life. I'm actually a very creative person when I can get my shit together enough to produce anything from this blog to stained glass to perler bead sprites. I've always loved writing though. It's the greatest creative outlet(personal opinion) because you can express anything you want. Plus, with my awful sleep schedule it's great for me to just do all my writing at night. Everyone else is asleep and its the time I feel most creative. What does any of this have to do with anything? Well, I've started writing for a cool website called ComicBuzz. It's been awesome having things that need to get done. It's that feeling that I'm contributing to something and that's awesome for me. I'm renewed creatively in a lot of areas. It's time to start creating again. I have plenty of free time so the blog continues. I know you're all so happy to hear that! Please take a minute and check out the site, I'll link it at the bottom. Keep an eye out for my reviews. A big thanks to those of you who keep reading this blog. It really does mean a lot to me!
Currently listening to: Help! by The Beatles. Fun Fact: I'm a huge fan of The Beatles ever since I was a kid. I Need You is probably one of my favorite George Harrison songs.
These are a couple Adventure Time coasters I made for a friend the other day.
Last Thursday was an eventful day to say the least. I went to see my gastroenterologist at Brigham and Women's. The plan was to talk about how Xeljanz wasn't working for me and how my health has steadily declined since Christmas. We discussed basically how every drug I've been on has not worked and we're still a ways away from the next drug being approved. Because of this I'm back on Imuran which is a chemotherapy drug. It's not pleasant and I probably won't feel any better for 2-3 months which is pretty fucking terrible. I'll get back to this though because the real attraction of the story was what happened next. Both my gastro and my primary care doctors wanted blood work. I had prepared for that but assumed I'd be able to do it at another location on the next day since that's what usually happens. My doctor wanted blood right away at the hospital. I hadn't had much water to drink yet and I hadn't eaten anything yet either. I thought it would be okay,get it done and leave. Once I got in the chair and the lady pulled out 8 tubes for my blood I knew it was going to be bad. I don't have problems getting blood taken since I've been having it done multiple times a month for 14 years but this was just a perfect storm from the start. I also have small rolling veins and it takes a true pro to get one on the first try so I got the needle in the arm and move it around until you hit one move which already made me queasy. I made it to tube 7 and then just full on passed out. I remember getting dizzy and super sweaty, they kept asking me my name and where we were. Then I remember people trying to move me and then I woke up on a reclined chair with a bag of ice on my neck. It was seriously a terrible ordeal and I just wanted to get out of there. While this was all happening my dad was in the car taking a nap.
Back to the Imuran. I haven't been on it for about 8 or so years and I hadn't had too much success. It doesn't hurt to try again the doctor says. After only one day on it I remembered why I couldn't take it. My nausea is out of control making it even more impossible for me to sleep. My bedtime has been 6am since last Friday because of it. I've also noticed my hair is shedding more but I'm going to not focus on that because stress will make it worse. It's time like these when I seriously contemplate throwing all these pills in the toilet and just taking my chances. Unfortunately the last time I did that I ended up in the hospital having my colon removed. I just get so tired of this whole dance. The side effects on some/most of these drugs makes me not think it's even worth it to take them. I'm currently on 11 pills a day and still I'm having to go to the bathroom twice during one meal.What happens when there are no more meds to try? What happens then? I guess I'll know soon enough.
Currently watching: Home Movies
P.S. I'll be writing for a website called ComicBuzz! Look for my first piece soon www.comicbuzz.com and look for them on Twitter and Facebook with the same handle.
Here's a picture of me from 2004 with my very first kitty named Posey. I miss her.
""We chase the melodies that seem to find us until they're finished songs and start to play when senseless acts of tragedy remind us that nothing here is promised, not one day. This show is proof that history remembers. We live through times when hate and fear seem stronger. We rise and fall, and light from dying embers, remembrances that hope and love last longer and love is love is love is love is love is love is love is love cannot be killed or swept aside. As sacred as a symphony Eliza tells her story. Now fill the world with music, love and pride."-Lin Manuel-Miranda's Tony acceptance speech June 12th 2016.
I had been putting off writing a blog the past couple days because I felt my emotions were too strong in any one direction for me to say anything that could help to make sense of the events of the past few days. The problem with that is my emotions regarding the shooting at the Pulse nightclub will never subside enough and we'll probably never make sense of this. I've become too cynical regarding the state of this world, thinking that maybe we can never get back that feeling of safety. Maybe we've never been safe. I honestly don't know anymore and I'd be a liar if I said I didn't feel scared and sad and just utterly heartbroken. Then I realize that no matter what I say it will never bring back those 49 people who lost their lives. It will never take away the trauma that 53 others will feel for the rest of their days.
Last night as I read news stories about some of the people that never made it out of the club I couldn't help but just sit here and cry. They were tears for the deceased, tears for the shattered families and tears for the amount of hate that people feel towards each other for being different in this country. I don't think I can express enough how damn sad it is. We're all different and that's what makes us great. The ability to feel love is an amazing thing and I really don't think it should matter who we're feeling it for. If you're lucky enough to get it then hold onto it and don't let fear mongering tactics scare you away from being who you are. I'm an ally of the LGBTQ community and an ally to love in general. I think if more people would embrace love we can possibly make it through this.
The last thing I want to say is that I know I use this blog to write about the hardships I face through illness but last night with tears streaming down my face thinking about how those people will never be able to even worry about being sick I felt grateful to be alive. Grateful to be able to worry about such things, to see my family everyday and hug my cat. Make sure that you always tell the people you care about how you feel and make the most of every day and remember love wins.
If you want to help please visit oneorlando.org Any donations would be helpful.
It's been 4 days since my last blog. At first it wasn't intentional, I just happened to get home too late and forgot to write. Then I thought to myself maybe a blog everyday is too much? I'm thinking of keeping it to a few a week so you guys don't get sick of me. Honestly, not too much has happened in the past 4 days. I did some grocery shopping, went to the movies to see X-Men Apocalypse and went out to do some pop hunting. I'm trying to limit my spending so I can finish paying off my Disney trip. The best way for me to do this is by not going anywhere because as soon as I do I spend money.
I've been addicted to shopping for probably ever. When it's down to the wire and counts I can save money but man is it so hard to do. I just love buying stuff. When I'm sad or not feeling good because I'm sick or whatever the case may be, I buy myself something. And guess what? I feel better. It's an addiction as valid as any other and it honestly doesn't bother me. I can't stand people who think they know better about how I should live my life. A house and mortgage and all of that might be right for some people but that's not the life I want to live. I value experiences really more than anything. I'd rather travel and just figure it out later. And that might not be for everyone and that's ok, I won't force my lifestyle on others and they shouldn't do the same to me. As long as I have money to pay my bills then I'm all set.
Lately I've had another addiction and it's been watching YouTube vlogs. We've(Aaron and I) been watching videos on YouTube since it launched basically but I never really got into watching people's vlogs until recently. There's some pretty cool content being created. I really like a few specific channels including TheTimTracker and TheDailyWoo. They're both daily vloggers so they've been uploading content everyday for more than 4 years which is amazing. The dedication that these people have to what they're doing is incredible. I've already shown that I couldn't write a blog for more than 4 days in a row. It's cool to be able to pull up basically anything you want on YouTube and find people who are just trying to put some positivity into the world. For some reason the spell check is trying to tell me that positivity is not a word. Ok then blog. Let me know if any of you have any kind of addictions in your life in the comments below!
Currently watching: Scream the tv series
Here's a picture of my feet from the other day when I got a pedicure. I hope I don't know anyone with a foot fetish. Feet are gross.
I was thinking about what to write today and while checking my OkCupid app inspiration suddenly struck. I've talked about the things I've been going through with my illness as of recently and how I deal with it on a daily basis. Something I haven't touched on yet is how it can mold and shape relationships of a romantic nature.
Dealing with Crohn's just day-to-day is hard and messy and frustrating all on it's own. I've found it very difficult to just maintain friendships let alone any kind of romance. In the beginning of any kind of relationship I usually try to hide the fact that I'm sick. It seems like it would be easy considering on the outside I look like every other normal,healthy and functioning person. This plan works alright until you have to start explaining why you need to use the bathroom more than 3 times for possibly 5 mins each time in one hangout session. Or when you have to constantly explain why you can't eat popcorn or any kind of nuts and no it's not because of a nut allergy. The jig is usually up when I have to tell people I can't hang out because I'm in Boston at the hospital for a few days or that I'm having my 3rd colonoscopy for the year. And this is already super hard with people who are supposed to be your friends. I'm not saying everyone I know is insensitive or doesn't accept me but there are definitely some who I think really haven't grasped the severity of my situation. Now in saying that I do have to mention that I also have a few people in my life who have gone above and beyond for me,bringing me to treatments and doctor's appointments and for that I've always been grateful.
Trying to just maintain a social life is already challenging enough and now try to add in dating someone and having to go through the whole process of explaining everything you're experiencing is exhausting. Not to mention scary because that person essentially has be accepting that I or anyone who is disabled has limitations physically and sometimes emotionally too. What's the etiquette of bringing up that you have a disability anyway? "Thanks for dinner, I had fun and by the way I have no large intestine." I'm not saying it's impossible to find this person but it will be tiring and sometimes I wonder if it's worth it. I obviously know that relationships are hard work even between healthy people and that the only way to find this person is going to be by looking. I don't think he's going to fall out of the sky one day but I'll admit I'd prefer it since it'd be so much easier. If anyone has any experiences or insights on this please let me know in the comments below!
My final thoughts are that if I find that person that would be great. And if I don't I'm honestly not too worried about it. Heartbreak sucks anyway but that's another story.
Currently watching: Jurassic Park
Tonight's picture: I think it's clear that I'm just too picky. Even if nothing ever comes of using this app I will say that I got some pretty amusing messages out of it.
I'm laying here watching Toy Story and trying not to focus on the amount of intense pain coming from between my legs/my ass. If that sentence was too much for you then you should stop here. As I explained last night I have an abscess and when I woke up this morning it ballooned to probably the size of a Brussels sprout. Now,it might not sound bad but you also have to imagine it full of liquid and throbbing. How's that for a visual? My day has consisted of boiling baths and heat packs. In order to get some relief I was told by my surgeon that he needed to see my pelvic MRI images before he can help me. I called the hospital where I got them and they failed to mention I needed to FAX OR MAIL them written permission to release the images to my surgeon. I made those words bold on purpose because 1.) Thanks for mentioning that way before and B.) As if this all isn't taking long enough I would need to send them fucking permission through the mail. I'm pretty fucking lucky that I can get my mom to fax that shit. Lucky but also unlucky in that I now need to wait another two days before I can send said permission since they didn't tell me until this afternoon. As you can tell I'm more than a little pissed at the situation. I'm just pissed and depressed at this point.
One bright spot for me in times like this is always Disney which is why I'm watching Toy Story and will probably marathon some other Disney movies tonight too. I've been trying to remind myself that in September it'll be time for our trip to Disney World and everything will be fine by then. My cat Misou and a lot of movie/tv binging looks like it'll be my life for the time being until I can get some help from the surgeon. I can already feel myself going a little stir-crazy. I'd like to write more but it's just tough to focus. Now I'm going to waddle to the kitchen and re-heat this heating pad and then take some Vicodin.
To infinity and beyond.
Today's picture is how I found Misou after I came back from one of my baths.
A closer to 30 than 25 female living with chronic illness. I've got an obsessive love for cats, Disney, video games and cats. My name is Alissa.