Life Update: Where has my life been?

I don't even know myself. I've got my GI test results back. Gluten intolerance...not Gastroparesis.
Which is good I guess, I have to just change up my diet rather than go through the craziness of finding medicine or more procedures. Other than that, I have a lovely colon according to the doctor.

But the rest of my life, is just falling apart. 

So Many Things!!!!!!!!! - PART 2

Some days I think I learn how to manage this POTS thing, but I never fail to be beaten by it. 

....

Since my last post, I have been fighting for my MA back. Got that accomplished. Finally. Then as soon as I got it back, I went to the ER because of a weird wacked - out episode in the middle of the night. Then a couple of weeks later, I got this sinus infection thing. Which has been lasting me for two weeks and putting me out of doing anything of much. And my heart rate has been up in the 100 to 115 range. Fun times. I tried to nip the infection in the butt right away....but nooooooo. 

BUT!!!! I have been working again. As a babysitter. Of all things, besides the library, it's a pretty easy job for me. I've done all the babysitting things before and I love kids, so it comes naturally to me. I can sit for the majority of the time, I can drink and stay hydrated whenever I want and I can kick back and colour and watch Angelina Ballerina with the kiddos. 

I don't have to worry about evil corporate not liking the fact that I need a drink or a stool to sit on whilst working nor breaks to survive a shift.

This doesn't even feel like a shift. I just enjoy myself hanging out with the little ones. I have honestly missed them since I've been out sick. Thank goodness for their aunt taking them in for the week. 

Dumb POTS.

How the F*ck did I make it through College?

Before college, I admit, yeah the signs of POTS and all the other crap was there. But at that point I had no clue where it was going or what it was exactly. So, I continued my life as a normal human being and lived through it; running into sick days and hospital visits as I do now. 

Whilst going through college I had, like most students, and idea that my degree would make me fly and become a fairy that shit stardust and my life was going to be okay once I had a "real" job. But I got sicker and then realized that wasn't going to happen.

 And further down the road now, I wonder how I even made it through a hard-working private all women's college??? Women's leadership was shoved up my butt 24/8, networking was second nature, and coursework was nothing but icing on my cake. I was helping run like 5 clubs and working with professors to better programs and running around like a chicken with it's head cut off. And now I can barely stand in the shower for 10mins to clean myself. 

HOW????? that's what I want to know??? 

And do you think it's worth chronies and spoonies to go to college??? And what can we do to help us succeed our dreams? 

New Year???

Thus far the new years hasn't really bought much change except for the mere fact that the digits have changed and I hope that through my own strength I can make it. My new years resolutions are to survive.

By that I mean, surviving...

1. More medical paperwork
2. PMS-ing stomach that can't decide what's going to tolerate
3. A wonky heart
4. My body's inability to control it's own temperature
5. Laying in the middle of the floor trying not to barf on random occasions
6. Fighting the government as to why I need disability


But I look forward to:

1. FLORIDA (which involves Harry Potter theme park)
2. Perhaps having the opportunity to go to a clinic for POTS
3. Getting my freakin' photography in gear!....................how does one network with illnesses?
4. A better job
5. And a first pet

The guess the only real resolution I have for myself is Meditation and Focus. I want to start making my life easier and less stressful with organization and meditation. Having peace of mind and a de-cluttered life is the way to begin. I've already started with getting rid of things that I don't need and minimizing the items I own. This includes; clothing, books, decor, linens, and papers. And even, IF I DARE SAY IT, art supplies that I don't use anymore.

Let's hope that I survive another year and moving brings better things.

Getting yourself stuck in the sickness trap

Forgetting to take my medication yesterday morning left me in a mind trap of my own doing.

(it helps when you take your medication)

Whilst in my trap of hating everything and feeling depressed, I've only came to think "what am I doing with my life?" Will I ever be able to do anything? Career-wise that is. I'm in an ever-evolving realization that I won't be able to be what I want or do what I've imagined for years. It's the only thing that ever gave me a reason to strive. But, now what?

I went to an all women's college, which was empowering and made me think I was going places. But after getting sicker, it only seems like college was a waste of time.

The library setting fit me really well, but it's a hard job to get. And I love being an artist, but that's kind of a hard job to make a living off of. Working in retail again lately has me in the dumps thinking I'll get past anything more. Especially with an illness. I can barely work the hours I have now. Which sucks because I fear I'll lose my job over my illness, constantly.  

I swear it's the reason why my job at the library dwindled.

~

Now I'm here, preparing to move to another state and I hope that it'll give me some life. I already feel guilty not being able to hold up my end of the stick in the relationship I'm in. I can't work nearly as hard enough as my partner to make a living. And I wish I could do more.

I hate feeling like I've lost everything that made me, me. And couldn't keep at least a part of it.

Career Woes with Chronic Illness

Two weekends ago I was incredibly proud of myself being able to photograph a wedding that had a lot of ups and downs in the ways of POTS. I had many things to watch and look out for not only for my health but for a wedding. a WEDDING! I was shooting it! It seemed like an incredibly crazy idea at the time and it still was when we were driving up to the venue of the wedding. I became sick the day of with my heart racing and nausea taking over. My man perhaps thought it was because of nerves and I could say he was right because later on, the rest of me was fine. I kept hydrated as I could and used my wheelchair to get from the ceremony spot to the reception spots, as well as the bride and groom rooms. That fact that I have a wheelchair to do that, makes me incredibly happy. 

Thee Gorgeous Bride and Groom! 

I was lucky to have shot my first wedding with a couple I knew and were flexible and knowledgeable of my illness. It have given me the experience of doing a bigger event other than a 2 hour engagement or family shoot. 

The Bride and I! 

I thankfully made it til the end of the night! 10am to 10pm! 12 hours of work and I didn't die. Well, I was sore for a couple of days with my fibromyalgia. I managed to keep up my energy with an extra potassium pill and drinking TONS of water and Gatoraide. 

~ ~ ~ ~ ~

Afterwards though, I had a new job to start that Monday, and had a total breakdown realizing that I couldn't handle a retail job that required a lot of standing, moving up and down, and crazy amounts of stress that I couldn't handle 5 days a week for more than 8 hours a day. I have a hard time enough working an 8 hour day at a library. 

But, meanwhile in my library job, I am losing hours because of our funding. Which sucks because it's the perfect job for my body to handle all the time and I'm still able to do photography occasionally. Yet again, I have to struggle to find a job because I'm not making nearly as much as I was and it's hard with paying for an apartment and with my SSDI still "in progress". It would be nice to know that my disability could be approved and finalized so I could live without having to worry. 

But alas. *dumb government

10 p.m.

All day has been a crap day. 

I haven't heard back from a job interview I had (two to be exact) 

Applied for another job (long ass application; deal with it) 

Haven't stopped going to the loo

Now I feel like barfing. 

My eyes are dry and my nose is runny...allergies on their merry way.

And my poor man's car has been giving him trouble again.

Can there be time to catch a break? 

broken car AC ... heat ... new hydration

 Sadly, I have discovered that it is in fact true that the AC in my car has died and in result I am dying from like 10 mins of driving in the heat (even with all the windows down). A potsie can only stand the heat for so long....otherwise dehydration happens and then that leads to passing out. Whilst on my way for a quick hydration refill at the gas station (hunting for the fastest way I could get some Gatorade).  I came across 989 OnDemand. I saw how much potassium it had and salt and it was love at first site!

 

 

Check out their website here!

 

I think it's pretty amazing stuff and it's hydrated more than coconut water and Gatorade! Also, no sugar!

Painsomia

groooogllllllelleleleelskfajnd,fj bflndkf

So the night began off well, until I hit 4 AM. Then the tossing and turning starts and it's too late to take sleeping medicine cause I got to wake up at like 9 AM for work. Today is going to be a shit day. The joy of Painsomia. Your mind wants to sleep but your body is in too much pain. Now, here I sit in bed next to the sleeping man, entertaining myself on tumblr. I'm glad he doesn't mind all this health nonsense. 

Meanwhile, I guess I shall update ya'll about my life. The apartment is finally coming together. I wouldn't mind posting pictures, but non-the-less, I'm not really done with making the place nice and such. Needs more work. I also need a pantry and a couch. The living room is basically a weird storage, tv, art room at the moment. The kitchen is pretty much done except for the lack of food storage. And the washer and dryer are broke. So, yep. Working on that. Once, my funding is recovered from being out of the hospital. It takes time for those things to replenish. Especially when you were out of work for a month. Yippee! 

And well, school. I'm having a hard time with deciding that. I guess if I take time off and see where I go, it'll help. ........la-di-da. 

Right now, my health needs the time to situate itself. School is just going to add more stress, plus I have a more advanced position at work that takes up time. I also rather spend my other time focusing on my art career too than doing more school. 

Higher Education VS. Higher Education

As I've written before, I have been struggling with the idea of education and the cost of education; what's it worth?

More or less my average loan debt at this point is about $50,000. Between my undergraduate degree and semester of graduate work. By the end of this degree achievement, I'll be in let's say $70,000???? And the average librarian only earns $43,000 a year.
At this point my average living costs are about $12,000 a year. (Not mentioning my chronic illness costs) I'm probably only getting $9,000 of that plus whatever I can earn from my photography on the side.

That's a lot of numbers.

What's the worth? Unless I'm going to become a director of a library, not much.
What's the difference of higher education verses higher education?
You're own self worth, ambitions and goals.
What do you want? What can you do? What are you happy with?

I'm a self learner and I'm always learning regardless of earning a degree. There are free classes and credits one can take at certain universities or LIBRARIES! And you can do it on your own time! Just think of the idea of homeschooling....it's a constant learning area!

I also have a chronic illness, which can be expensive. I'm always looking for ways that I can save and be worthwhile for my energy level. I know very well, that I can't handle a high-stress, high-energy environment all the time. Taking a course in life and in education that is beneficial to my health and wallet is worth it!

So here is my resignation with HIGHER education. Adios, expensive schools and hello loans. I'm going to concur you and use the resources and degree I already have to my potential!

The Poverty Trap of Disability

This post from Tumblr is the exact problem I am currently facing: 

Is EDUCATION and SSI going to be worth the fight? 

theselfproclaimednordicnerd:

I was in hysterics yesterday about how disability is a poverty trap.

You’re literally locked into programs. Want to receive SSI? Meet the income guidelines. Think 700 dollars for a whole month isn’t enough to live on? Get a job. To continue receiving SSI, stay in the income brackets. Oh, and your income will subtract from your SSI payments. You are locked into 700 a month, you are disabled, working is an incredible challenge, sometimes impossible; you can either work for some of that money, or receive the same amount without the work. Do you have huge medical needs? No problem, most on SSI qualify for Medicaid, and after 2 years you get on Medicare. Are you relying on that? Well, if you want to get out of poverty let’s hope not.

Once you earn enough that over-take what SSI could bring, you either fall out of Medicaid or lose Medicare because you lost SSI. You now have to buy insurance from your worker; hope they provide it, wish for it to be cheap, and pray to a deity it covers all you need (you’re not likely to be able to pay daily co-pays if you’re working, and if you’re working you’re to busy to attend daily appointments, and you still have to balance your housing and bills on top of that).

Oh, and did you want to eat? On top of your 700, you qualify for food stamps. With 0 income, you get, max (for NM), 180 for the whole entire month. Hope you don’t need any special, expensive diets, especially if it’s necessary for function. Your food stamps amount gets knocked down with every dollar your earn. With my cash assistance, 240 a month, I lost 20 dollars of my food stamps; we’re conditioned that 20 isn’t a lot, but assume you can eat meals for 1, and that’s 20 whole meals, if you eat 3 times a day that’s about a weeks worth of food. Imagine that 180 is still cheap for food for an entire month (spoiler alert: it is).

Climb out of the poverty bracket, you lose your SSI and food stamps. So, that’s 180 from your own money. Let’s pretend bills aren’t a thing, cellphones aren’t necessary this day and age, and the internet is a luxury. You now have to pay for your own medical bills, cut down the amount of appointments for time and because nobody hires someone with limited schedule, you have to pay for your food, and you have no disposable income. Add back your bills.

Now, add in the economy. Let’s say you didn’t go to school (If you did, add student loan payments to your list. These happen regardless of SSI or not). Your jobs are limited to entry jobs, most likely part time, most likely minimum wage. Pretend you have an awesome manager who loves you, you get 30-35 hours a week. Federal minimum is 7.25. Let’s just assume you’re New Mexican, and earn 25 cents extra to that. You’re looking at about 800 a month. Look at you! All independent, earning your own money! You keep your food stamps, you keep your Medicaid, and there goes SSI. You’re nearly dead from working so many hours, and so hard to be able to earn your bosses approval, so congrats on your 100 extra! But, wait a minute… It was hard surviving on 700. It was hard even with all your therapies and doctors. So.. it’s still hard to survive, but you have less tools to cope now? Uh-oh. Schooling is a must then, huh?

So, you leave your job, you head to school. You get to keep your benefits. Phew, good thing you can have more appointments now, because you need serious therapy on top of things to help you cope with what that job did to you. Well, you still put in as much time, but at least the schedules are flexible. It would be awesome if you didn’t have a disability that affected intelligence, schooling, or cognition; you may be in school, on your poverty benefits, a very long time. Well, also the fact that not everyone can even do schooling. But, you, johnnyjillian, can. And thank goodness! So, you spend 4 years to get your bachelor’s. Good for you, johnnyjillian!

Too bad nobody told you that that degree doesn’t do much in this economy. Oops, that was 3,000 for your in-state community college associates and 30,000 for your in-state, state university bachelor’s. Well.. live cheap and pay it back through your benefits while you wait for work. You may go further in your education, thank goodness for your good work ethics, and your very high grades and community service, because you get into a Masters program that’s very competitive; spoiler alert: each Master’s program is. Once more, add intensive education, cognition, blah blah, and this time no online classes! Who knows the amount of debt there, or if you can even qualify for loans. Though, it’s too bad that even MAs can end up working retail jobs. Guess you have to step up your game, huh?

Well, without disability, a PhD is a very hard degree to obtain. Schooling got increasingly harder with every semester, but the grades requirements didn’t fall as well. The community service, the interning, the experience, all of that, it all comes together and asks that you be exceptional for acceptance. Beyond acceptance lies work that is super-intensive, hyper-focused, cut-throat.. I hope your disability is autism, johnnyjillian, because your hyper focus might be the only thing to bring you in front of the competition.

Then, your jobs are limited; hope you picked a good field, or else you might end up only being able to teach at colleges, for a dirt-cheap salary. And so, johnnyjillian, you’ve been at this for a decade or so. You have finally gotten a job outside poverty, a job with fantastic insurance, a job that is flexible for your doctor’s appointment, enough to put food on the table, to buy a home, gain true independence. Fantastic work there, johnnyjillian!

Now, it’s too bad for susanbob, y’know, her disability requires intensive care, her IQ shows an intellectual disability, and you couldn’t handle a regular job. Best you stay home and collect your benefits, hun, because goodwill is only gonna pay you 20 cents an hour.

(^Sarcasm. That is meant to be ableists speaking. I do not endorce dehumanizing and or unequal treatment of anyone regardless of disability (or race or sexuality or anything else really)

(via psychhealth)

Education and Degrees and Healthcare (things America are not good at)

This has been a struggle since I got out of college and gone out into the real world. Is a masters degree really going to serve me well? Does the degree I have now benefit me? NO. 

 Do I want to pay all the money that I put into having another degree? It's a struggle, one that angers me and frustrates me to no end. At this point, I'm already going to be paying back loans until I'm 40. 

Do I stop now and make advances in my job and work up the latter? Take on more work? 

Taking on more work or having another job wouldn't be so bad if it wasn't for the POTS. I can't possibly get another job, I can't afford it health-wise. I'm already hating the fact that I have to appeal for my SS. (trying not to think about how much a lawyer will be) I'm thankful for a cheaper apartment and medical assistance, but my job just does not pay enough. The worst part is that I do more work than I'm paid for and I'm over educated. 

The library is a wonderful place and it's works so well for what I want in the future and for what I want to do with my life. Just how do I show I am worth the payment for the work I do? And without a library degree? 

And let's talk about that appeal......

I'm not disabled enough to qualify for Social Security Supplements? HELLO HEALTHCARE!!!!!!! Have you seen what I have to go through and how much things cost????????? And the fact that I can only work a part time job does not...I repeat....does not PAY FOR THINGS! 

I quote: 

"We realize that you have not worked consistently, but based on your age of 23 and 16 years of education you can work." 

What the hell does that mean? What sort of reason is that? 

I go to the hospital or a slew of doctors at least once a year that put me out of work for a month and then it takes me a whole year just to get stable again. Knowing that it'll just happen again. That is not a healthy lifestyle SS! 

  

END of RANT.