15 Things No One Tells You About Chronic Pain As A 20-Something

Syndicated from Huffington Post.

This was originally published on The Mighty, a site that finds the strength, joy and beauty in disability and disease.

1. Sometimes you feel like a lab rat/medical experiment gone awry.

"House M.D." doesn't even begin to cover all the weird treatments and experiments you've undergone to aid your health. Your "medical team" becomes the people you know and hear from most.

2. The idea of going out and maintaining a normal 20-something social life is laughable.

Think you're going out for a few drinks tonight? Oh wait, you can't because of your specific diet, medications you're on, etc. Friends may be disappointed. You may be bored (really bored). Netflix will be your bestie, don't worry.

3. Some people are really open and kind about your chronic pain. Some are just the worst.

Explaining your chronic illness truly becomes an art. You read their body language and take their past experience and personality into consideration before divulging your illness. Then, usually, it's a game of 21 questions.

4. There are good days and bad days.

Good days and bad days depend on a lot of the perpetuating factors you may have. Some days, I'm good enough to take a day trip to go shopping and other days, showering is a legitimate goal if you can make it out of bed.

5. You become your own doctor/pharmacist/advocate.

Doctors can make mistakes sometimes. I double-check all of the interactions of my drugs when I'm prescribed new drugs to make sure I'm not going to accidentally kill myself. Do your research. Many of the things that work for me now consisted of a series of trial-and-error combinations of medicine and therapies.

6. With chronic pain comes new and different priorities and limitations.

The way I best describe any given day is that my life is like an iPhone battery, and I'm on energy-saving mode. Everything from cooking, to getting dressed, to going out to eat, to working take a little (or a lot) of battery. Some things I used to love to do are just not worth it anymore.

7. Chronic pain is a full-time job.

I'm not kidding. If I could show you my calendar, between all my specialists, I have on average about four doctor's appointments weekly. Half of them are usually out of town -- meaning they're out of state. I also, on a monthly basis, get acupuncture, chiropractic work, Reiki, massage, trigger point injections and see a personal trainer (who specializes in chronic pain) twice a week to weight train. If something pops up out of nowhere and everything needs to be rescheduled, I'm on the phone for sometimes hours rearranging appointments.

8. Certain foods become your best friends.

When my pain was at its worst about a year ago and I had no medication to help my pain, all that could comfort me was mashed potatoes and ice cream. Turns out, mashed potatoes and ice cream are not a cute look for my body and with my physical limitations, cooking healthy food for myself and exercising is much more challenging.

9. Sleep, above all, is key.

Seriously, if I get no sleep the night before, my whole day and body goes to sh**. Getting enough sleep is worth it.

10. Maintaining a love life? LOL.

I haven't even begun to crack the chronic pain code on this one. I have no answers here.

11. Get a pain guru.

Having someone close who's been through the ringer with everything you're dealing with is so helpful. Anytime I call her frustrated about something, she has five to 10 different solutions I never thought of. My pain guru happens to breed puppies. Speaking of which, puppies are just about the best therapy you can have, so get those, too. Nothing feels better than lying in a pile of puppies.

12. You will have haters.

Send donations in their honor to your favorite chronic pain charity.

13. A few people will be inspired by you, a few people may feel too sad to even be around you and a few people may slit your tires when they see you in handicapped parking with a handicapped tag.

The tire thing didn't personally happen to me, but it did happen to someone I know. Don't forget, just because you can't see an illness doesn't mean it's not there! Don't be those people.

14. Silver lining: you get to watch every show you ever missed out on and try a lot of hobbies you never thought you'd have time for.

Hobbies I've started since medical leave: learning French on Rosetta Stone, writing, flower arranging, pottery, painting/sketching, jewelry design, puppy socializing, volunteering at a pit bull rescue, cooking, baking and reading.

15. Chronic pain has forced me to see the world in a different way. It has forced me to embrace all of my vulnerabilities and genuinely be a better person. Ironically, because of my chronic pain, I am now finally able to do exactly what I always dreamed of.

Puppies, My "Pain Partner in Crime" and How One Woman Saved My Sanity

Let me just say, as cliché as it sounds, I truly believe certain people come into your life for a reason.

If you have read my story (which you should), you will know that at one point last October, I decided puppies were my "happy place" and I reached out to several breeders to "help socialize". While most of them were quick to turn me down,  "Mary" (given name for privacy) graciously agreed after explaining my situation.

Mary is the owner of her own goldendoodle breeding business. And it's thriving, one of the most sought out goldendoodle breeders in the doodle biz. (Plus she is a woman who truly loves and takes care of all of her dogs, which is unfortunately not always a common thing with breeders.)  Mary is also a wealth of knowledge on any dog advice or information I could need at any given time. 

What you would never guess about this person is that she too suffers from a very serious, progressive genetic mutation disorder called Systemic mastocytosis. Like most of you reading, I had never heard of this in my life and it is apparently very rare. This woman, due to the "masto" (as she calls it), also suffers from several other serious medical issues including fibromyalgia, diabetes, RA, etc. (as well as several other things). You'll find things like wheelchairs, oxygen tanks and traction devices in her house. 

The day I was finally allowed to come over was one of the best days I can remember of this last year. (There weren't a lot of them.) I was so excited. I've never tried any recreational drugs before, but there can't be a more euphoric feeling than being completely smothered in 6 week old fluffy puppies. 

The best part was--I sat for two hours on the ground (unheard of) and almost felt NO pain. While Dr. Gerwin may technically refer to this as cognitive behavioral therapy, I called it a serious fluffy distraction that made me immensely happy.

Mary had known, due to my desperation/plead to play with puppies that I was suffering from chronic pain, but I was completely oblivious to her own. Like most people with chronic pain, her medical issues were not divulged to me until there was a closer relationship formed and I was not just that strange girl at her house smothering her puppies with love. Once I was officially known by Mary as "the dog whisperer" and as time went on, I was over to "help" and "socialize" (read as: play with and smooch) more and more. I was so amazed by the concept that puppies could genuinely help with my pain. 

The more I was over at Mary's house, the more we talked and the more we realized we quickly had a lot in common. The only difference: I was a novice and Mary was a long time, experienced mastermind to world of chronic pain, plus we both share a very clear obsession with dogs. Like me, Mary believes dogs truly have the power to heal. We have planned many ridiculous themed puppy photoshoots together and when my 11 year old German Shorthair Pointer/absolute love of my life, Gracie, died from cancer in February (heartbreaking), she even offered me a puppy. Even thinking about Gracie now, I still tear up. The dog spent so many hard days by my feet in my bed and I will probably always miss her. Even though we ended up getting a Weimaraner (due to a full blown obsession my family has generally had with them) that we are now infatuated with, Mary was always there for support whenever I needed her. She helped train our new puppy, microchipped her and saves every picture I post on the internet. That's right, Sophie, our Weimaraner puppy, has a huge folder of pictures on Mary's computer and I love her for it. When Sophie got pneumonia, and we were convinced was going to kill her, Mary was on call giving suggestions and support 24/7.

Gracie, our GSP. (I loved this animal more than you will ever know.)

Our little Sophie, 8 weeks old, the day after we got her. Can we talk about how stunning she is?

Like sponsors to addicts in recovery (see my last post), Mary quickly became my pain mentor/guru/pain partner in crime and one of the very few people I felt I could truly confide in, where my shit was never too depressing or hard to hear. While people that were close to me, like my parents, grandma and best friend, could be sympathetic, Mary could truly understand my pain, how I was feeling emotionally and why without really even having to explain it to her. I always felt like I was burdening people telling them my problems and how I was feeling. I never felt that way with Mary and she was never a person I didn't want to talk to. (I generally didn't want to talk to most people.)

And the best part about her? She is a damn strong, empowered woman and she will always tell like it is. (I admire these types.) 95% of everything I've learned about handling pain, physically and mentally in general, is purely because of her. 

Like puppies, Mary plays a large role in my success to handling chronic pain, not that she would ever take credit for it. She also seriously put all my shit in perspective. Her situation, not that she would ever want the sympathy for it, is much more serious than mine…and harder to treat. Even when I search it, there is almost virtually nothing helpful the internet offers. After hours of long phone calls exchanging pain problems and suggestions, my phone call would end and I would get teary eyed because I was so inspired by her. I have met people from all walks of life over the course of my 24 years on Earth but I had never felt this way about a person before. I seriously do not know she does it, but I commend her. 

To this day and probably forever, I will always respect her and appreciate what she's done/doing for me.  This woman, despite all her medical issues, will not let the masto "have" her or deter her from what she loves--dogs. Even with all the shit she has to put up with on a regular basis, she is crafty as hell and always finds a way to make things work. She is also really resourceful and she is always there for me, even if it's at two in the morning. 

Because of her, I was motivated to be the internet's Mary because everyone that has chronic pain needs one. There are certainly not enough Marys in the world and through all the randomness of our worlds strangely colliding for our mutual love of dogs, I am honestly grateful just for knowing her and a better person because I do.

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.