21 Generic Tips That May Seem Obvious, But Are Worth Stating

Hindsight is always 20/20.

1. You are not as medically incompetent as you think and doctors are not as smart as you think (or give them credit for). I cannot stress this enough. Not that all people should be diagnosing themselves or that all doctors are total idiots, but there is usually some fine line between the two. I spent a lot of time not second guessing what doctors were telling based on the sheer fact "that they're doctors". Through my own personal experience, it seems like (just like any other human on this planet) they make mistakes too and more frequently than you'd expect. 
2. Don't believe everything everyone tells you. A lot of extra stress had been added to my life based on comments or suggestions completely random people had to say about what I should be doing, side effects that I could be getting from drugs I was taking, etc. For example, one person had innocently and casually said to me that a friend of a friend he knows takes thyroid medication and it made them lose all of their hair. I panicked. I thought "Great, I'm going to be on thyroid meds the rest of my life and also have no hair." I love my hair. While that's not necessarily untrue, it never happened to me which is shocking because I end up with a lot of really obscure side effects. Actually I think between taking the Biotin supplements that I do (awesome) and blow drying/styling my hair less, I would be bold enough to say that my hair has flourished and never looked better. Thanks, thyroid meds! Another innocent person told me once and was thoroughly convinced that if I just stopped eating dairy and meat completely (and did nothing else), all of my problems would just dissipate. Well innocent person, you are just an idiot (and I don't feel bad if you eventually stumble upon this blog and realize you were the one that said the dumbest thing I've ever heard.).
3. Take peoples' opinions and comments with a grain of salt. Nine of ten people don't know what they're talking about and if they don't have chronic pain or are actively taking care of someone with it, they probably have no idea what you're going through. I've spent more time than I should fuming over the general public's naive reaction to my situation. (Hence the blog.) 
4. Make an excel document of all the doctors you see, their diagnosis, the prescriptions they prescribe, any adverse effects from the drugs and the date. When you end up seeing 3509486043 different doctors and trying 43059803498609 meds, you start to forget everything you take, who you saw and for what. (Smart) doctors will be able to analyze all the categories of drugs you generally don't do well with and can think out of the box enough to prescribe you something you are less likely to get a reaction from. Also, save any/all x-ray/MRI images and reports from everything into one document. 40 page questionnaires become much easier to fill out when you're not running around like a chicken with your head cut off looking for that one MRI analysis of your neck from NYC nine months ago. That took 7 months to figure out for me. 
5. Look into shit yourself.  Again with the doctors, if they diagnose you with something, always look into it yourself. Look into the drugs they're prescribing you and the interactions they could have with other drugs you're taking. 
6. Don't be afraid to voice your opinion, especially to a medical professional. If anyone can imagine, I used to be pretty meek when it came to listen and following the instructions of medical professionals. (Lol) Generally, the results were unfavorable and not always necessarily thought through. If your doctor tries to prescribe you something that you don't feel like you should be taking, a treatment you don't agree with, PT exercises that you feel like might give you more pain, say something. I have altered my doctors' plans many times and periodically called them out for missing something. By the time I saw the rheumatologist (hypermobility "specialists"), I knew more about it than she did. Her resident didn't even know that was something that rheums were supposed to take care of. Take that, med school. 
7. This goes to say that you know your condition better than anyone, so go with your gut and best judgement when it comes to making decisions. Generally once you have chronic pain, you know what triggers it, what you can handle, what feels okay and what doesn't. Don't let people push you into something you're uncomfortable with. 
8. Try not to cry in public. This was hard for me, but if you cry in front of a doctor, it will never help with your "I promise I'm not crazy" case. As much as you can, try to keep it together. 
9. Be prepared to ask questions, a lot of them. When you anxiously wait 6 months for an appointment with a specialist, you need to be prepared and make your appointment worth your while. I researched things and made a note in my phone with all the questions in the world I could possibly think of that I may need to ask. The doctor may answer all your questions before you even get to them, but I have a really bad memory so I need to write everything down just in case. 
10. Periodically write down a description/keep a journal of your pain. Like I said before, I've repressed a lot of shit from the last year or so and at one point completely forgot that this pain I'm having now was only in my neck. The only way I remembered was because I was looking at an old email I had sent complaining to a pain specialist I was seeing in New York at the time. 
11. Find things that interest you for distraction. Granted, if you are having really bad pain there is probably little to nothing you can actually focus on to distract you, but do it if you can! Maybe the one silver lining to being stuck in bed is that I got to binge on a lot of TV shows I never had time to watch before. I've probably watched 90% of the documentaries on Netflix and seen every Bob's Burger and Family Guy episode 100 times each. I also played with puppies and am learning French (usually too much effort to do for a general pain day, but it's something). To desperately try to stay relevant in my field, I try to read Women's Wear Daily (industry paper) every few days to stay in the loop. When I was having a really good day, I would usually just bake or cook because I love it (even if it hurts.) I am also embarrassingly ridiculously into Pinterest and it has been an incredible helpful tool to stay creative (and look at pretty stuff), find good recipes, online shops and good information about most things in general. Puppy photoshoots are also incredibly fun and entertaining. 
12. Take pictures of medical stuff (ie. allergic reaction rashes, etc.) to show doctors. You will get your point across 10x faster when you have an up close and personal shot of a bunch of hives covering your entire face showing him instead of telling him. Nothing like a rash selfie, really. 
13. Be very nice to nurses and office secretaries. Those people have more power than you think. Trust. You will thank me for this later. Also, if you are waiting an insane amount of time for an appointment, feel free to be that annoying person that calls to remind them that you are in pain and wondering if they have any cancellations. Somewhere between the guilt and the harassment, they will find a way to get you in faster. Actually, today I just sent Dr. Gerwin's nurse a picture of my puppy, Sophie, because I told her I would and she loves that shit. (Puppies are a crucial part of the operation.) Furthermore, most people that are in pain are usually (understandably) cranky, so it is a breath of fresh air for someone who is actually nice to them. 

    

    This picture landed in my Hopkins-top-national-specialist nurse's inbox today. 

14. It never hurts to ask. No one gets anywhere if they don't ask for it. If you're waiting for a long time at a doctor's office and can't bear the thought of sitting anymore, tell the nurse and usually they'll let you lay down in an exam room. 
15. Listen to Mariah Carey. This is mostly just ironic but not really. In my most dramatic moments, "Through the Rain" was my go-to sad song. (I'm convinced I was a gay man in a past life.)
16. Don't be afraid to make suggestions. Half of the things that ended up working for me were things that I researched that never occurred to doctors before I made the suggestions. (Ie. "If x drug isn't strong enough, can I just take y drug with it so it actually has some effect on me?") Also, make friends with your pharmacist. Instead of waiting on hold 4,000 hours for a doctor, it's usually much faster and easier to get ahold of them and they know more than you think. 
17. Be open minded. I was initially pretty stubborn about trying new things, mostly because it always backfired on me and I hated the idea of injections but that is pretty much the only reason I am where I am today. 
18. Think through decisions. Don't do anything irrational because you are temporarily trying to make your insane pain go away. Like I said in a past post, bad pain can cause you to make a lot of illogical justifications for things and make you desperate enough at some points to really try anything. My point is don't do it. And never trust Yahoo Answers. 
19. If something seems or feels strange, it probably is. If you start randomly throwing up a lot or getting rashes or whatever it may be, it is probably not just coincidence. Almost every time I've looked into shit, there was always a much bigger problem behind it. (ie. I used to think I was just "naturally nauseous", decided to look into it and went to a gastroenterologist a few years ago. I found out I had really bad acid reflux and esophagitis…which I later found out is a symptom of Joint Hypermobility Syndrome. Damn you, JHS.) 
20. Try to be as understanding and sympathetic as you can for your caretakers. Whoever is taking care of you is a godsend. It probably sucks almost as much for them as it does for you. Sometimes these people need a break (I used to be offended by this notion) but you need to let them take one. Remind them how much you appreciate them!
21. Manage your expectations. For the first 6 months, I kept thinking "In 2 months, I'll be perfectly better and back to work!" all the time. By doing that, I was setting myself up to be disappointed. Once I accepted what was happening to me, that even once I'm truly better, I will have my own "new normal" and that is finally okay with me.