#chronic illness

I’m getting an iron infusion tomorrow then again a week later. Hopefully that will help with my constant need to nap. But the pressure in my head is getting worse. I can’t get an MRI until this Corona shit calms down. In the meantime I’m fucking dying. I don’t know what to do. I need something to help with the pressure and pain. And I’m told to “hang in there”. Fuck you and fuck everyone for punishing me and trying to make me feel bad for attempting suicide.

When I was in partial people kept telling me how brave I was. Telling me that I’m one of the bravest people that they’ve met. What they don’t understand is that I’m not brave at all. I just don’t care about anything anymore. When you don’t care then what would you have left to fear?

I had such a rough day today. I’m in partial hospitalization (a temporary day program) right now and some other patients there really pissed me off. Talking about how they think “psychos” shouldn’t be kept with other patients when being hospitalized. “There should be another ward for people like that.” I don’t know why it bothered me so much. Shit like that usually doesn’t get to me. I haven’t suffered from psychosis since early 2018. But the way they were talking about it… Like they are so fucking superior. It just got under my skin. Then they were talking about smoking weed, doing shrooms and lsd at festivals. “Not like bad drugs. I don’t consider that stuff real drugs.” Neither do I. But what exactly are “bad drugs”? Huh Karen? It’s getting hard to think again. Fuck my clouded mind! I need help. I need to make this feeling go away. My head is starting to hurt again! I need some “medication”. I don’t know where to get it anymore. I’m starting to feel myself fade again.

I just want some fucking drugs, man. Just need to forget the reality of my situation for a while.

I think it’s time to start again.

I had a dream last night that I was with a girl, named Candy (just adding this little detail so I don’t forget later and also because of the girl named Kandie in my head… I don’t want to get them confused), that I knew (I used to smoke crack with her occasionally in the real world). We got some fentanyl from my stepfather (I don’t even have a stepfather) who happened to be a doctor. Candy helped to shoot me up and I wondered later why I didn’t feel anything. Ah, fucking dreams…  

@just-4-thought replied to your chat “Awkward moments with Kari”

*puts palm to face* this made me chuckle because I get these too and I get reactions like that from medical professionals. I appreciate your sense of humor about it. I need to try to take your approach

Yeah, I guess I don’t know how to deal with things like that other than to laugh at them. I am kind of known for cracking jokes while semi-conscious, because otherwise it’s just a huge bummer waking up on the floor. It did take me a little while to get to that point, though, I have been passing out somewhat regularly for like five years now so I’m pretty much used to it at this point I guess.

To be fair I’ve also been wheeled out on stretchers crying multiple times. Sometimes that still happens.

the-one-eyed-witch:

For people with inconsistent symptoms that go from very severe to nonexistent:

You are not worth less on the days you can’t get out of bed. Your value does not come from your ability or productivity, your value is inherent as a human being. You don’t have to do anything, your state of being as a human person has value.

You are also not making it up. You’re not lying. Your pain is still real even on good days. Just because it is not the present moment, doesn’t mean it’s not still there. Good days are good days, not cures or proof of being Secretly Abled

bitter cripple moment is being in inconsoleable rage when your abled friends talk about minor aches and pains

I woke up today with a weight on my heart. I miss you guys. It’s been too long, my friends. 

Living with chronic illness, both physical and mental, feels like walking around in concrete boots. I can do it, most days. I can get up and shuffle along until I can go back to bed. Day-to-day activities are done, life is taken care of, but my mind is still telling me every little possible thing that could go wrong — negativity, frustration and fear all rule inside my inner thoughts. Feeling like I’m not good enough, yet I know I am. Feeling like I’m not doing enough, yet I’m doing all I can. It’s a constant battle inside of myself. 

Just before I left, I hit 30,000 subscribers here on Tumblr. And honestly, it scared the hell out of me. I don’t tell you this to brag. So many people have seen my inner most thoughts. And yet, this blog is only a small part of me. I felt so much pressure to be the perfect version of myself, but my love of Shawn is only a tiny part of who I am. 

Then the hate started. A friend said that’s when you know you’re popular, when you start getting anon hate. Every single word sliced into me, into my soul, because so much of who I am is on this website. So much of my heart is here. I know I needed to just let it go, but I couldn’t. So I ran. It’s a common reflex for me. But, I didn’t realize how much I would miss you guys, the community who surrounded me when I was most vulnerable and held me up through so much. 

So here I am. I’m standing in front of you asking for your grace as I learn how to be vulnerable without hurting myself. As I learn to share more about all the things I love. As I am my whole self. I am here, bearing my heart, and asking for you to be kind. Please. 

I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong. 

My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints. 

A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist. 

I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.

Three doctors shouldn’t have three different opinions about what my diagnosis should be.

We’ll see what the geneticist says in August. 

My therapist told me recently that she thinks being healthy is a privilege. She said she doesn’t have to worry about whether or not a task will use up all of her energy before she does it, and she acknowledged how hard it is to plan your life around fatigue. Hearing that from her was so validating. 

I’ve had bad experiences with therapists before and thought I would never find one who understood chronic illness, but they’re out there. If you think having a therapist will improve your quality of life, keep searching for the right one. 

It’s more than ok to switch doctors if you feel like the care you’re getting isn’t adequate. It’s not unusual for chronically ill patients to see a dozen or more doctors over several years before they find one who can properly diagnose and treat them. Don’t let anybody make you feel like a “doctor shopper” or a difficult patient just because you want good medical care - after all, we wouldn’t have to see so many doctors if more of them did their job well.

Back when I was in school, a teacher who knew I wanted to be a writer told me that my chronic illness would make me a wiser, better writer. I said something polite in response, but now I would probably tell her this:

I would rather be well and have absolutely nothing to write about. Being sick sucks. Illness has no perks, benefits, or silver linings that I wouldn’t trade for good health. 

Parents with disabilities shouldn’t be discriminated against, but all too often, they are.

According to talkpoverty.org, disabled parents are more likely to lose custody of their children during a divorce than non-disabled parents. In 37 states, parents can have their custodial rights revoked solely because they’re disabled. Child welfare services remove children of disabled parents at higher than average rates, and disabled people also face discrimination when adopting and fostering children. 

The vast majority of parents with disabilities are capable of providing a safe, loving home for their children. Families shouldn’t be separated because of these discriminatory practices that are based on outdated, ableist definitions of parental fitness. 

(Source: https://talkpoverty.org/2015/07/31/parents-with-disabilities/)

Our healthcare system is too complicated, and that negatively affects chronically ill patients. 

There are too many different health insurance plans to count on one hand: Medicaid, Medicare, HMO, PPO, EPO, POS, HDHP. It’s hard for patients to figure out what all these different policies actually cover. 

Insurance companies may require patients to jump through hoops before they’ll cover more expensive treatments. Patients have to try multiple medications and undergo less expensive (but less accurate) medical tests before insurance companies will cover the higher cost therapies and tests their doctors want to prescribe. Sometimes, insurance companies will even try to deny coverage for services they’re contractually obligated to cover. Patients with chronic, complex illnesses often have to fight and appeal insurance companies’ decisions, and may even have to work with patient advocates to get proper treatment. This process eats up a lot of energy and time that chronically ill patients don’t have. 

Because of how complicated it is, our healthcare system has higher administrative costs than healthcare systems in other developed nations, leading to higher costs for patients. This hits people like me with chronic illnesses particularly hard. 

Even if doctors efficiently diagnosed and treated chronic illnesses (and studies have shown time and time again that they don’t), navigating the healthcare system would still take up a considerable amount of a chronically ill person’s time and energy. 

Seeking out a diagnosis and treatment for a chronic illness shouldn’t take years and shouldn’t feel like a part time job. Something needs to change. 

I don’t think disabled people should lose their benefits when they get married. 

Adults who became disabled before age 22 risk losing their benefits when they get married. Any benefits they receive through a parent’s work record are discontinued, and if their spouse makes too much money, they can’t receive SSI either. All disabled people on SSI, regardless of when they became disabled, risk losing their benefits by getting married. The only people who are guaranteed to keep their benefits are those who worked long enough to receive SSDI through their own work record. 

Marriage is an important religious and social milestone for many people, and it confers important legal protections upon couples. I think that all disabled people should be able to get married without losing their only source of income and their financial independence. 

Don’t beat yourself up if you’re chronically ill and can’t exercise as frequently as you’d like to. 

Exercise is often recommended as a treatment for chronic fatigue and pain, but those symptoms make it difficult to exercise. A lot of people with chronic pain and fatigue, myself included, experience an increase in symptoms during and after physical activity. It can be hard to find the time for exercise if you know you’ll need a few hours to recover afterwards, and it’s difficult to motivate yourself to do something you know will leave you in even more pain. 

Doctors and mostly healthy people often don’t understand these challenges, but don’t let anyone make you feel guilty about how much you do or don’t exercise. Try your best and don’t stress. 

Don’t feel pressured to spend money on alternative or experimental treatments for your chronic illness if you can’t afford to or don’t want to. 

When all of your family and friends are telling you to try probiotics, yoga, special diets and lots of other treatments not covered by insurance, it’s easy to feel pressure to try them. Our health obsessed society subtly sends us the message that we don’t really want to get better if we’re not doing everything we conceivably can to improve our health, like trying every alternative treatment that holds the elusive promise of a cure. 

But you don’t have to spend money on supplements and acupuncture unless you want to and believe it will help you. Ignoring the magazine headlines about the healing powers of turmeric and only following your doctor’s advice is more than ok. Don’t let our society or anyone in your life make you feel guilty about the treatment decisions that you make.