A Health Blog for Sick People

My journey and things for people dealing with Chronic Illness

[goingwithmygut]

Me: constantly forgets to take my meds and am currently 2+ doses behind

Someone: well maybe you could just stop taking them for a while or lower your dose to see if you get wor-

Me:

[helpmequitmydayjob]

When someone asks about my chronic illness

2 months after dx: Well, I have a rare, genetic connective tissue disorder that effects my ligaments and…

2 years after dx: My body just sucks. I’ll spare you the details.

[spoonieofmayo]

“Basically I’m tired a lot… but like really tired… and naps don’t help”

[deeacctivateed-deactivated20200]

Things I need to hear:

Only you know your body best. Don’t stop fighting for your healthcare when you know something is wrong.

[goingwithmygut]

It would be so nice if I could go like a good 6 months without having any problems with my medicine. And here I am having problems two months in a row. Last month the pharmacy accidentally sent it to my dorm instead of my house. Luckily I had to take a trip up there the next week anyway so I was only a week late (technically two weeks, but my doctor had me skip a week for being sick). And this month I triple checked with them that they were sending it to the right address and it arrived at my house today! Yay! I was at work, so my brother thought he would be nice and put it up for me. But he stuck it in the FREEZER even though the bag clearly says "refrigerate" on it. By the time I got home the syringes were frozen solid. I'm currently working with the pharmacy to see if they can send me a replacement, so hopefully it works out. I'm so glad I'm in remission right now, if I had to deal with this kind of thing in a flare I don't know what I'd do.

[goingwithmygut]

So I think I have bronchitis and I'm trying to decide whether I need to go to the doctor tomorrow to find out if that's really it before I take my next dose of Humira. Most stuff I'm looking at online says you don't need to go to the doctor for bronchitis since it's typically a viral infection and will clear up in a few days, however a lot of stuff I've looked at says you need to be careful if you're elderly or "have an immune-lowering condition" because it can turn into pneumonia. So while I don't want to spend $30 for the doctor to tell me something I already know and they can't give me any meds, I also don't want this to turn into something worse. This is my first time getting sick on Humira so I'm not really sure what to do. Any suggestions?

[macncheeseablearchived]

Long post about different views on insurance

So I had a talk with my mom (a conservative) about the new healthcare bill and I realized one of the issues with America’s divisions over healthcare is how you view insurance. Now my mom, and many like her, has the view that you’re paying into a system so you can get something out when you need it. It’s like an emergency fund. You pay $10,000 a year so if you need a surgery that costs $10,000 you’ve given the insurance that money and they’ll give it back. Now of course sometimes you pay more into the system and sometimes you pay less into the system but the general idea is you’re paying for YOUR future needs. On the other hand, this is how health insurance was explained to me when I took a class on the healthcare system last year (I’m majoring in Healthcare Management). So an insurance company agrees to insure a group of people. Let’s say for our example there’s 20 people they’re insuring, and insurance costs $10,000 every year. Now the insurance company assumes 5 of those 20 people are going to get sick, and treating that sickness will cost $20,000 each. The insurance is fine with that because they’re getting $200,000 and having to pay $100,000 out so they still make a pretty nice profit. In this way of looking at it, you’re not an individual paying for your future needs. You’re a person paying into a pool that will cover whoever gets sick this year. Maybe it’s you, maybe it’s not. But collectively everyone’s paying for everyone else’s healthcare. This is why until she explained her view of the insurance system it was so confusing to me why she felt people with pre-existing conditions should have way higher premiums. Now my mom herself has epilepsy, a pre-existing condition. She feels because she would cost the insurance company more money than her premium cost she needed to be paying more for her fair share. Which when you look at insurance the way she does absolutely makes sense, it would be like putting $200 in your bank account and then withdrawing $2,000. Your bank would be bankrupt in a week. But when you look at it the other way you realize healthy people around her should be offsetting her cost because of the community pool. I’ve also seen lots of people online who have these conflicting views of how insurance works and I’ve seen people trying to argue with them that have another view and they don’t realize what the other is trying to say. It’s part of the reason some people just don’t understand single payer at all. So I guess I just wanted to put this out there even though it’s not actually super useful information. But I would really suggest everyone research a lot of information about our healthcare system and insurance and now pre-existing conditions worked before 2011 and other stuff, it’s really interesting. And as always feel free to ask me questions, I’m more than happy to answer them!

[goingwithmygut]

I haven't had to stab myself with a needle in over 24 hours so I'd say today is a fantastic day!

[pensoverpencils]

Tips for Studying as a Spoonie

Hey guys, most of you probably don’t know it, but I have a chronic illness called Crohn’s disease. If you don’t know what that or being a “spoonie” is, google it or check out my blog @goingwithmygut. Anyway, it causes some additional struggles with being a good student, so I thought I would share some tips I’ve found to be useful dealing with my illness and staying on top of things!

1. Register with the Disability Support Services at your school

What? You don’t think you have a disability? Well think about this: have you ever needed time out of school for doctors appointments or feeling sick due to your chronic illness, needed additional time at a test because you kept having to stop to run to the bathroom because of your chronic illness, needed a blanket excuse for being late almost every day because your chronic illness makes it hard to be on time, needed a notetaker, or any other additional service? Then think about registering with DSS. They’ll work with you to figure out what accommodations you need and they’re normally super nice and won’t judge you at all. Even if you never use the accommodations set in place, its good to have them in case a worst case scenario situation happens!

2. Make a schedule

Decide what day of the week you do laundry, what day you clean, what times are for studying, when you take your meds, etc. Then try your hardest to stick as close to the schedule as possible. And when you get off schedule? Just skip to wherever you are next on the schedule and don’t worry about it.

3. Don’t study in your bed

This is so, so hard for us, I know. I struggle with bad fatigue at times and my bed is the most comfortable place to study. But I also find I don’t retain as much information when there, and I’m tempted to just drift off into a nap. So I always work from my desk, and only get in my bed when going to sleep. I find a good way to stop the temptation to crawl back into bed is to actually make my bed in the morning. A good thing about working from my desk is normally I’m too lazy to move after sitting there, and if I’m there I’ll usually get some kind of work done.

4. Try to gather all your supplies before sitting down

Like I said, once I’m seated I’m usually not getting up. So I try to grab all books, notebooks, snacks, drinks, etc. I need before I sit down. I keep my meds close too, so when that little alarm goes off all I have to do is reach over to my bookshelf and I’ll take them on time.

5. Stay hydrated and eat well

While I say I don’t move, I do make an effort to get up for meals and to refill my water.  You can’t function properly without the proper fuel. Eating is one of the things I put on my schedule, so when it’s time to eat I try to come to a stopping place and go get some food. When I’m in a flare, I find eating very small amounts many times a day is better than eating meals, so I’ll just get up to get more (healthy) snacks throughout my study time.

6. Don’t sit for TOO long

Especially if you have circulation problems or you have an inflammatory condition. These things increase your risk for blood clots, which trust me, are not fun. Get up and stretch every 30-45 minutes, and move your legs around to get the blood flowing, especially if you have a bad habit of sitting on your legs like I do! 

7. Buy compression/arthritis gloves

If you’re like me and after writing a lot your fingers start to swell, invest in some gloves. The kind I have are fingerless so I can still use my phone when I need to. I don’t know if the copper actually has any useful effects, but they work! (Be aware though, your handwriting will definitely be worse while wearing them. But as long as you can read it, it really doesn’t matter how bad your handwriting is.

8. Type your notes

Sure studies show that you retain information better when you write it, but if you have any kind of joint or circulation problems that is not going to be a good note-taking method for you. I always type all my notes and then when I get back to my dorm, I rewrite them.

9. Find a support group

If you go to a bigger campus, probability-wise it’s highly likely there’s other people like you struggling with the same or similar issues. It’ll be great to get some tips from those people and to just be able to have some companionship. 

10. Don’t be afraid to take some time off, and know your options for when you do

Sometimes it’s just too much. If you have missed excessive amounts of class time, your grades are dropping, and you’re just really struggling with your illness, it’s okay to take some time off from school. Most colleges have a medical dropout form you can do, and your grades for that semester won’t count, it won’t count against you on your transcript, and at some schools they’ll even give you a refund or partial refund. Talk to your registrar office if you start really struggling, and also talk to the people at disability support services. They can provide you with additional resources as well.

Remember your health is more important than your grades! If anyone else has any other useful tips they’ve found, please share!

[luchia13]

hey guys psa regarding hospital bills

don’t just pay it. do not automatically pay the hospital bill when you receive it. call your health insurance provider and POLITELY say, “excuse me, i just received a bill for $1200 for my hospital visit/ER visit/etc., is that the correct amount i’m supposed to pay?” because hospitals bill you before your health insurance and they will take your money no matter how the amount due may change based on your health insurance looking at it. 90% of the time, if your health insurance is in any way involved in the payment of that bill, you do not have to pay as much as the hospital is billing you for. call your health insurance provider first, and POLITELY request clarification, always remember that the person you are talking to is human and this is just their job, and then you will very likely find out you actually only owe $500.

don’t shout at anyone about it, don’t get mad, just understand that this is The Way Things Are right now and call your health insurance provider before paying the bill your hospital just sent you. there’s a chance the hospital bill might be correct, true, but call your health insurance provider.

[smallercomfort]

THIS IS SUPER IMPORTANT. after my car accident last year the hospital billed me ~$8000. They sent me letters asking me to pay, and I called them back saying my insurance was processing the claim. This is also what I told the collection agency when they kept calling me about the $1000 emergency room fee (billed separately from the hospital fee, mind you). Once everything got straightened out, all I was actually liable for was my $200 emergency copay.

[thevelvetdevil]

!!!!!!! things my ass didn’t know !!!!!!!!

[anamatics]

Yes this is a life lesson my adulting ass didn’t know I needed and I’m out 80 bucks for an anti-nausea pill. 😒😒😒😒😒

[elodieunderglass]

Reblogging for American friends.

Also, it is important [for people receiving medical care in the USA] to carefully read all of the items on the medical bill and look for errors and overcharges. I know that the normal feelings of avoidance and dread can make it hard to look at scary hospital bills, and that’s okay! But as the OP mentions, private orgs like hospitals don’t monitor overpayment of bills - they are motivated to charge you extra - and it is basically impossible to get your money back. Read the bill carefully and make sure that the charges are correct, using the links below for help if you need. If they haven’t sent you an itemized list, you can ask for one. Sometimes you will be charged extra for items or treatment you didn’t receive. Most people don’t know that you can dispute medical bills! But in 2009, Consumer Reports stated that 8 out of 10 medical bills scrutinized by a watchdog had errors, and generally you are not obligated to pay for someone else’s error.

You may be charged for using medication that you actually brought into the hospital with you - that’s easy to dispute! You may be charged for the consumables used during your stay such as sheets, gloves, gowns, etc - the hospital should actually cover that under its running budget. You may be charged for a brand name drug if the generic was available for cheaper - the links below explain how and when you can dispute this. You may be charged a surprisingly expensive “oral administration fee” (where a nurse puts pills for you to take in a little clean paper cup and then hands it to you) but that’s worth disputing if you were actually able to take the pill out of a bottle and put it in your own mouth. And so on.

8 Things You Should Know About Challenging a Medical Bill (FORBES) (includes links to sites that help you calculate how much a procedure/treatment usually costs in your area, if the costs seem super high)

7 Tips for Fighting and Paying A Huge Medical Bill (FORBES) This explains briefly how to negotiate costs, and payment plans.

10 Common Medical Billing Overcharges You Can Prevent (Bill Advocates) A breakdown of errors and overcharges to double check.

Check medical bills for errors: Overcharges are fairly common, and correcting them can save you thousands of dollars (Consumer Reports) More of the same with links to some groups.

[goingwithmygut]

Definitely read it for mischarges! I received a bill for $60 for an venous ultrasound I had to have the other day, which wasn't terrible so I almost just paid it. But looking at the bill I realized my insurance didn't pay anything, and they normally cover the entire copay for those kinds of tests. I called them and turns out they billed it as a pregnancy ultrasound and I don't have maternity coverage (because I'm not pregnant). I then had to spend 15+ minutes politely arguing with the woman on the phone that I was not and have never been pregnant until she rebilled it correctly. Sure enough, my copay went to $0. So just check those things because mistakes can definitely happen!

[goingwithmygut]

I like when commercials for Humira come on while I'm giving myself my shot. I find it funny while they rattle off the side effects I'm injecting myself with that same (necessary) poison.

[goingwithmygut]

Me: So yeah because of my health issue...

Friend: I didn't know you had that health issue!

Me: how... did you not know? I literally talk about it all the time? Do you not listen when I talk?

[goingwithmygut]

I'm always seeing these commercials for suing Xarelto for excessive bleeding but who do I call for my Xarelto not working at all???

[chronicallyillblonde]

When you can’t remember if you actually took your medication or you just thought about it.

(via chronicallyillblonde)

[goingwithmygut]

Random person: well this medication you're taking is just treating the SYMPTOMS of your disease, it's not actually helping you

Me, internally screaming: I have a CHRONIC illness. THERE IS NO CURE. I will take what I can get.

[goingwithmygut]

So I wrote a nice letter a while back to my Senator about how I have a pre-existing condition and I need the ACA in order to keep my health insurance. And a few days ago he sent me a letter back explaining to me no, he would not vote to keep "Obamacare". He then explained to me, a healthcare policy student, what the Affordable Care Act was. And he didn't give any solid reasons as to WHY he felt it needed to be repealed. So in other words, the government sucks

[crohnsbae]

Sometimes I feel like everyone around me is so tired of hearing about my disease. I consciously try to limit the amount of time I spend talking about it, but when you’ve got this disease that’s quite literally tearing your body apart, it starts to bleed (unintentional pun) into every aspect of your life. Everybody has their stuff. I get that. It’s just that sometimes I feel like I’m dealing with 90% more than anyone else my age has to deal with. I know that I’m not alone in this feeling, at least with you guys, but you know what I mean.

[lifeaccordingtocrohns]

Does it really hurt, or is it all in my head?

A novel by me.

Featuring such great chapters as:

- Is my pain tolerance really high or does this just not hurt? - How much would this be hurting a normal person? - Do I need to suck it up and carry on? - At what point does this need medical attention?

and my personal favourite,

- Am I making a big deal out of nothing: will the doctors believe me?