2 Years Later...

So, it's been awhile! But, I moved here in August 2015 and have been fairly dormant (via this blog) since then and I'm back by popular demand. 

I think over the course of the last two years, I have experienced every single emotion on the spectrum from completely miserable to absolutely euphoric (in the least schizophrenic way possible). For those of you looking for a very quick catch up and are new to my blog, here's a very quick synopsis of my life over the last 5 years:

2013: Burnt out from work after working insane hours. Started getting mysterious (and horrible chronic pain). Had to leave New York from my job as a design manager and move in with my parents. Bad nights turned into bad months. Bad months turned into a bad year. Gained a shit ton of weight. Finally, after being on the brink of completely losing my mind several times, got a diagnosis from a brilliant neurologist (Dr. Gerwin) at Johns Hopkins: Chronic Myofascial Pain Syndrome, Ehlers Danlos Syndrome-Hypermobility, Mast Cell Activation Disorder, Hypothyroidism, POTS (which came about a year later but just lumping it in, because why not). (See tab above for explanations.) Creep back to the beginning of my blog for all the details of my life and tips for how I dealt with it.

2014(ish): This year was mostly a blur. Felt like a human guinea pig for most of it. Lots of trial and error of medications, therapies, injections (read as: nightmare), tears, fighting with my mother. Things got worse before they got better and eventually started getting better. Saw a fantastic geneticist at GBMC (Dr. Francomano) who now runs EDNF (see charity tab). Hung out with my dog a lot. As things got better, mother suggested taking some photoshop classes once in awhile at community college. Three days later (after furiously researching), I suggested a Masters in London. After much debate (and possibly a powerpoint), they agreed. This was the best test to try my independence, get back on my feet (with great assistance) and try to get a job. I got into my top choice program.

2015: Just terrifying. So much planning, so much researching. Lots of OT, lots of doubting and existential crises. "Could I handle it? Was I going to be okay?"

When I moved in August and started classes, it was a whirlwind of anxiety and adrenaline (which is apparently what I'm 97% comprised of). Everything hurt. Everything. I was pretty much secretly wearing braces all the time.

Me and my dad's first afternoon tea.

Two days a week was even rough, but I LOVED it. I loved London, I loved my new friends, my masters program. But the change was completely overwhelming. It was hard to switch my brain after two years of watching Family Guy to do real work again. But I had a disability advisor and a contract of disability benefits with the school and the city, which I will talk about later in a separate post. I was scared of how the people in my class would respond to my special "handicap" treatment without seeing physical ailment. Turned out, nobody cared and the only two other Americans in my class were also on disability.

Girls from my program and I out for a GNO karaoke night.

Overtime, things got easier and a piece of me started to feel like my old self. I thought, if I'm going to have to deal with all the misery my health brings me, I may as well love every other aspect of my life--and I did (still do). Dealing with social stuff and containing my over-ambitiousness and overly-opportunistic personality was hard and still is. My best friend came to visit. We went to Paris. I had a pain related temper tantrum, but other than that, an amazing time.

2016: The best and worst year combined thus far. Started consulting for my future (/current) boss for a collaborative unit for my MA. Things got BUSY. I took on a lot of work and had two other massive classes and my thesis proposal. Went to Istanbul for fun/work with my mom. Went to Moscow to do a photoshoot for a friend/school project. Went to Normandy to stay at friend's country house for the weekend. Boss offered me a conditional job offer for my dream position (pending I passed my MA, we got the work visa and I could keep myself healthy.) Presented my thesis proposal and promptly ended up in the hospital with pneumonia after. 

Istanbul with momma.

Photoshoot time.

Dinner in Normandy

My adorable friend Thomas visiting and entertaining me in the hospital.

The hospital came at the worst time. This was right when I was supposed to write my thesis. Boss came to bring me flowers and told me to go home for a month to relax. And I felt better, but once I got back continued to work and write my thesis. On New Year's Eve, I finished my thesis and graduated with Merit. 

2017: Started working (without writing--which was a total luxury). Moved to a new flat (which was completely exhausting. Made it on to the BBC to talk about snail venom as a pain analgesic (...who knew!?) Am almost working full time--I am slowly working up to it. My boss has been really lovely and flexible about the whole thing. Work has, so far, been really beneficial. I'm able to mostly work from home and keep to a schedule that fits for me. It's helping me manage my time and get myself in a routine to take care of my pain at the same time. This is something I'll talk more about later. 

But, just in the last few weeks, I've gone to Paris for work, done a photoshoot (with another one the week after next) with some very exciting things coming. There are honestly some hard bits too but I am really starting to feel like a semi-normal person. I am still having pain all the time and take all the same medications and still do monthly injections en masse, but overtime it seems like things are generally getting better.

I have a million things I want to write about with different tips, products, lists, funny stories and insight I want to continue to talk about. Sometimes I still genuinely can't believe I got here and didn't faint and fall in a ditch somewhere. So now that things are calming down, there should be plenty to come!

xx, E

Why Telling Someone Who's Sick "It's like you're on vacation." Is Never Okay

Ah, the naïveté of the "normal".

First, let me just say that referring to my (or anyone else's for that matter) medical leave as "getting a break" or "being on vacation" is straight up dumb. To the outsider, I'm sure it seems like I'm probably doing nothing all the time, but it is quite the contrary.

I would love to be on vacation. But guess what? Even when I would get a vacation, I don't think I would ever actually be on one, if that makes sense. I would love to temporarily (or permanently, obvs) remove myself from my pain and perpetuating factors to actually relax, enjoy myself and not feel uncomfortable. That would be awesome. When I will fly to London, I will now have a wheelchair, special accommodations and seating, extra drugs, carry ons, etc. Planning this flight alone has been exhausting/pain in the ass.

Like today, for example, my pain and GI issues were so bad that I have been nauseous, dizzy and spasming all day. I heard the weather was nice. I wouldn't know since I didn't get to leave the house. And more often than not, this happens pretty frequently. And, like I've said many times before, I have pretty much no medication to help with my pain.

"Normal" people---when you have the worst kind of flu for 2 weeks, do you truly feel like you got a break or had a vacation? I would imagine between the fatigue, muscle aches, nausea/vomiting, fevers, etc. that you would probably say no. Keep that in mind when you're talking to someone with chronic pain.

To be honest, through all the hard work I put in before having to move home--between working, school, internships, etc. this is single-handedly the most exhausting full time job I've ever had. Even things that used to be enjoyable (ie. going out with friends, actual vacations, dating) are just stressful and generally miserable. Most of the time, physically, I am miserable.

Rant over.

Great Link for How to Understand Someone With Chronic Pain

Great Wikihow article to share with family and friends.  I added my own GIFs/pics for entertainment value.

1

Remember that being sick does not mean that the sufferer is no longer a human being. Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body in which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.

2 Learn the code. Chronic pain sufferers will often talk differently from people free of constant pain. A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the health care providers can measure effects of treatments. The measure describes pain on a scale from 1 to 10; the 1 is "no pain at all, feel wonderful" and 10 is the "worst pain ever felt." Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when you experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief, and then think about this happening for the rest of your life! It's hard to find the words for that sort of pain.

3

Recognize the difference between "happiness" and "healthy". When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

• Respect that the person who is in pain is trying their best. When the chronic pain sufferer says they are in pain - they are! They are merely coping, sounding happy, and trying to look normal.
• Look for the signs of pain: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.^[1]

4

Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make their pain seem lighter than the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they're hiding or minimizing.

5

Understand and respect the chronic pain sufferer's physical limitations. Being able to stand up for ten minutes doesn't necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn't imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes. In many cases, they don't know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

• Insert "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, to this step, as the curtailment on a sufferer's ability to be responsive applies toeverything that you'd expect a person in good health to be able to do. That's what chronic pain does to its sufferers.

6

Leave your "pep talk" for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it's quite possible (for many, it's common) that one day they're able to walk to the park and back, while the next day they'll have trouble getting to the next room. Therefore, it's vital that you don't fall into the trap of saying: "But you did it before!" or "Oh, come on, I know you can do this!" If you want them to do something, then ask if they can, and respect their answer.

• Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would.
• Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. You can't always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

7

Never use throwaway lines. Assuming you know best by making such statements as "Ah well, that's life, you'll just have to deal with it", or "You'll get over it eventually. Until then, you'll just have to do your best", or worst of all, "Well, you look well enough", etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.^[2] Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: "So how have you survived?"^[3]

• Admit it when you don't have answers. Don't paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying "I don't know" and then offering to find things out.

8

Check your own patience. If you're impatient and want them to "just get on with it", you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

• A chronic pain sufferer may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
• Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

9

Be sensitive when suggesting medicines or alternative treatments.Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it's not because they don't want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven't worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.

• On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable.^[4] He suggests that people rarely ask these open-ended "helpful questions" that would help the chronic sufferer to open up and really talk.

10

Don't be put off if the chronic pain sufferer seems touchy. If that's the appearance, it's probably because they are. It's not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11

Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they're too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the "normality" of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12

Balance your career responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don't take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you're probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you're able, but also care for yourself.

TIPS: 

• Although the person with chronic pain has changed, they think the same; remember who they are and the things they did. They are still the intelligent mind that made a good living at a job they may have loved and had no choice but to give up.
• Pain is a difficult thing to describe to another person. It is felt personally, and it is based in both psychological and physical parts of us. The best thing you can do is to never assume that you know how it feels for that person. Sure, you know how it feels for you but each of us is different and it's impossible to get right inside a person's skin and feel their pain.
• Don't compare health problems. Don't say I've had that before and I'm fine now. Don't tell someone with chronic pain to suck it up and do their part. It shows your lack of understanding and makes the person living with chronic pain feel like a failure that they can't handle what they are experiencing and others would do a much better job in the same situation.
• When the ill person may finally open up to someone and are told, "call anytime", or "I'm here for you", "I will listen" only to be told later they "talk about it too much" or it's "all they talk about" they become more isolated and it becomes an impossible circle. What should they talk about? The latest beach trip they took? The new golf course they tried? Perhaps it is all they can do to get through each day, and with a family or children to care for the struggle is 100 times worse.
• No one wants to feel this way. It's awful living with chronic pain, but it's even worse when people give up on them or misunderstand. Punishing someone for not following through with one thing or another is going to make them feel worse and show them that you really don't understand. Those experiencing chronic pain already deal with more than most could ever comprehend. Everyday life is so hard and very lonely. Constant support, positiveness, communication and of course showing your love are all crucial, because life is quite depressing day-to-day with any chronic pain.
• Not everyone has pain every day and at the same time. It can be very stressful when the sufferer is achy one day then pretty good the next day, and maybe worse at night. You just have to understand that they can't control it and it's frustrating to them, too. Just be understanding and don't sigh and walk away.
• Remember the pain or discomfort and the ability of a chronic pain sufferer can vary greatly even within the span of one day.
• People who live with chronic pain know how they feel and are well aware of their situation, so avoid projecting onto the sufferer how you think they should be feeling.
• When asked about their pain level, chronic pain sufferers may not give you their actual level of pain. Because their pain is chronic, they are used to a certain level of pain, and may just accept that as normal or no pain. They may only give you a correct pain level when they have some form of acute pain, when the "normal" level of pain that they live with daily changes, when they experience pain that now feels differently (I.e., "shooting" instead of "aching", " burning" instead of throbbing"), or when they are asked directly about their current levels of both acute and chronic pain.
• Just learn to be a good listener; sometimes sharing silence is good; you don't have to fill every minute of conversation with words.
• Please don't suggest another doctor, another treatment, another miracle cure or tell how someone else died from the same illness or someone else was cured. We'll smile and thank you, but it doesn't help.
• Instead of suggesting how we 'fix' our pain, consider just being empathetic and giving them a gentle hug to let them know you're there to support them. They already hear and see endless doctors who tell them how to 'fix' or help their chronic pain.
• Sometimes just laying your hand on the shoulder of someone helps give them comfort. Remember to be gentle. Use a soft touch, something to help them connect.
• Truly think about all the responsibility that comes with caring for someone who is sick before dating them. Understand there is a lot to deal with and if you're even the tiniest bit hesitant, DO NOT BOTHER trying to talk yourself into it. You either are in it to be in it for it all or you need to respect yourself and them by not pushing yourself into a situation like having a relationship. It does not make you a bad person to think you can't handle caring for someone with health problems, but it does when you end up resenting them or putting guilt on them for being sick.
• Don't forget that they are still just as normal as you, even if they have different struggles. They want to be seen and enjoyed for who they are.
• Many people offer to help, but really aren't there when asked. You like to think you will help, and you want to be that kind of person. To some, it is simply a habit to say it; it makes you feel good about yourself but in reality you instead have a ready excuse when the request comes. Perhaps deep down you are afraid it will happen to you, and the distance you built helped you to move happily down the trail you have laid for yourself. The chronic pain sufferer no longer "fits" or "belongs" on that trail so off you go. You intend to invite them, you truly want them there, but you think or know they can't make it, they are different now, so you think "oh well, wish she could be here but she can't so..."

The Best/Ingenious/Go-to Products for the Chronically Ill

Some things I always think about (that never get less maddening):

1. If I had done, knowing what I know now, to help myself-- see the right doctors, follow the right treatments, I probably would've been better in 7 months.  Think about that. If I had known all these things from the very beginning with all the resources I have now, life would've been a hell of a lot easier.  (Not so fun story: one day at Dr. Gerwin's, I had found out from a nurse that the person he had seen just before me was just diagnosed with exactly what I had, but in a very unfortunate turn of events, had not been properly diagnosed/has been dealing with this for FIVE years. FIVE! I cannot fathom what my general hatred towards the world would be if I had this for five years without knowing what it was.) 
2. For the all the useless shit that exists on the internet, there are no legitimate "go-to" sites about things to do to treat your pain unless you stumble upon a sketchy Yahoo Answers page from six years ago with a lot of people who don't know what the hell they're talking about.
3. When information is known and helpful, it should be shared with others in an easily accessible and public way that don't include sketchy forums. (Not everyone is fortunate enough to see a top national specialist, which is part of the reason I feel compelled to share.) 
4. Not only are there no really helpful websites about things to try to do to help with pain-- there are even far less about things to purchase and products that are helpful to a person with chronic illness. 

So, I have compiled a list of products that have saved me over the course of a year and half that, through trial and error, have proved to be nothing but essential to my recovery. Also, it has been made known to me that I have an "unhealthy obsession" with "products" in general. Seriously, never take me to Target. I will find ways to entertain myself for hours and spend all of your money. Enjoy!

SLEEP

Mattress: First of all, I don't care what anyone says, if you have chronic pain, sleeping problems and plan on (whether you like it or not) being in a bed for long periods of time/days on end, you need a good quality, comfortable mattress. Prior to my disability, I had been using the same mattress since freshman year of high school. During my disability, I managed to get myself to Sleepy's Mattresses in NYC. I don't think my mattress is on the market anymore but I love my mattress. It is a Sealy Posturepedic "Hybrid" mattress that is half gel memory foam with a cooling top and bottom springs wrapped in more foam (or something). This was supposedly one of the best I could do (mattress wise) to support my back but was still supremely comfy without being too firm or stiff.

**Tip: if you are experiencing severe pain, on disability from work and are relatively into bargaining work these things into your advantage. I am a true believer that price is always up for bargaining (because I am Jewish/in retail) and you use the chips that are given to you even if they suck. Like usual to anyone who knows me, this mattress was naturally several thousand dollars out of my parents  budget given to me. The sales associate was playing games with me and I was not in the mood. He finally let me call the DMM (for all you non fashion people, district merchandising manager) for the Manhattan region and after unleashing some self pity and explaining my situation, I actually convinced the DMM to let me purchase the mattress a few hundred dollars above their wholesale price. I told him my mom needed to try it out at a local Sleepy's in Pennsylvania and we would purchase it when she had the time. (They love throwing you a "discounted rate for the next 24 hours" kind of deal to pressure you.) My mom went to go test out the mattress a week later and purchased it.  The sales manager there asked her if I was in sales because he had never seen any product move through the floor that heavily discounted. Moral of the story: milk it and you will have yourself to thank for a comfortable night.

Body Pillow: The idea of these didn't even occur to me until the middle of the summer and I think it has become one of the most essential aspects of getting sleep. Sleep is the key to being trigger point free. Trigger point free is the way to a happy Erica.  Thanks to Hammacher Schlemmer's "Total Body Support Pillow" I was sleeping much more soundly. This thing has been wrapped in every way you can imagine for all my newly acquired strange sleeping positions and supports my whole body while I sleep. One not so great thing to mention, with the high level of usage this pillow gets, the polyester/"cotton blend" (I have my doubts) cover is not soft or of good quality. Because I work in textiles and am relatively sensitive to everything, (my dad calls me "delicate princess"), my mom and I bought a light, soft but durable flannel fabric and actually made a cover for it. Much better, the princess can sleep soundly (as much as humanly possible).

Doesn't she look happy?

SHOWER/PERSONAL HYGENE:

So, I'm just going to go ahead and say (and this really is the shit nobody tells you when you have chronic pain), but when you are having bouts of severe pain for days on end, priorities get weird and things that would normally be important to you are not so much anymore. Things like showering, when you're barely moving or seeing other people aside from your parents, are not a priority anymore. This is especially true when you are already too dizzy to stand, sitting is painful, bending over is a fucking joke and your bathtub (if you are so lucky to have one) is not ginormous/full of jets.

Dry shampoo: Batiste Dry Shampoo is honestly a god damn life saver, in more ways than you'd think. First off, it did what it is supposed to (little things do these days), making me not look like a homeless person, covered up any potential smells of sadness and (AND!) sprayed my perpetually natural light blonde roots back to  my desired hair (and heart) color at the time, black. Lots of pain = not being able to consistently see your hair colorist, resulting in the periodic misfortune of looking like a crack whore.

Shower Chair: I accept the notion that I may get made fun of for actually admitting this, but shower chairs are where it's at. Once I finally broke down and bought the AquaSense Adjustable Bath and Shower Chair with Non Slip Comfort Seat and Backrest (I feel like a TV infomercial, but I promise you I own all these things and they do work for me.) life became a lot easier for me. It may take away any dignity I had left for myself, but it is honestly so fucking helpful. The idea of shaving became a real thing for me, guys. I didn't feel like an animal anymore. And, when you have pain, timing and efficiency is everything. One less step or extra movement gives me the ability to hurt less and potentially get more done. That is how I plan my life now. I particularly enjoy this chair because this thing has notches on the side, where I can stick my razor instead of leaning over to get it. I'm not kidding, efficiency is everything here, people.

Luxury 

Spray Body Lotion: Another dumb little innovation that seriously makes all the difference. With all the  eczema and weird rashes I was getting from drug reactions, sometimes I would forgo using lotion due to bending and excessive movement. (Yeah, I said it--too much work to use lotion. My life, man.) I use Vaseline Spray and Go Moisturizer in Total Moisture. Also, it's not runny or greasy. Me gusta.

Surf Spray and Straightening Balm: Like I said, efficiency is key. If I managed to make it through a shower, I was usually having too much pain to actually do my hair after. Actually, it's hard to remember the days when my hair was done. (If you know me, this is unusual because my hair is always done, no matter what.) Putting this stuff in my hair and blow drying it for about 2 min (because generally that was all I could stand) was my go-to thing for the past year. It almost made me look like I tried a little. I use Goldwell Flat Marvel Straightening Balm and Bumble and Bumble Surf Spray.

Body Bronzing Spray: This is a relatively new development for me. Sometimes, when you can't remember the last time you stepped outdoors, you look it. Since I am naturally "alabaster" (as mother sweetly likes to call it), I am easily susceptible to looking much sicker than I actually am (or as sick as I am) and ghostly. It is particularly alarming during the sweet summertime when most people are actually "sun kissed" looking. Since chronic pain/invisible illness can sometimes be a paradox ("you don't look sick", but then you do and then you go out of your way to really try not to), bronzer is a really nice way to mislead everyone or at least make me look a little more alive. I love this bronzer because it is really healthy looking, doesn't "melt" off my body or make me look orange. Bonus, it also applies evenly thanks to the pad it comes with and I can put it on my face. Thanks, LORAC TANtalizer Body Bronzing Spray.

MEDICAL STUFF:

Organized Pill Box: When you are trying several medications and permanently on several medications/supplements, shit starts to get confusing. (An hour before food, directly after eating at breakfast, 1 hour before bed with food, right before sleeping, every four hours..FUCK.)  Also, it's a nice indication when you have so many to keep track of to know when you're running out. When you plan for the week, it's easier to figure out who the fuck you have to track down to get another prescription for it. I use this pill box and it works fine, but I wish I had one that was even MORE organized (I am a little OCD sometimes).

Shot Bloks: This was initially also a stumper, but now I never leave the house without them/they are always in purse. Like you've read, I've had my fair share of dizziness due to trigger points and very low blood pressure (a symptom of Joint Hypermobility Syndrome). I've been told by numerous doctors and a dietician, it is important to keep salt in my diet to try and keep the dizziness at bay. These little Clif Shot Bloks taste like pure margarita ass, but they actually help because they are chock full of salt. If I'm having a dizzy spell, I can usually pop 3 in my mouth (begrudgingly) and can get through it. I think they're made for serious hikers and athletes; I find irony in that.

Glucose Tablets: Another dumb thing I'm supposed to carry around now is Dex 4 Glucose Tablets . According to my doctor and a lot of articles online, trigger points are known to cause hypoglycemia. If I don't eat for over 4 hours and I'm out doing anything (rare), it comes on pretty fast to the point of shaking and sweating uncontrollably and usually vomiting. Luckily, I have never actually passed out from this although there were several occasions where I felt like I was close. Like the shot bloks, these never really "fix" it, but it will tide me over until I can get some juice or a snack even though I try to always keep some with me.

Also, because I love visuals of everything, here's a nice little table showing some of the things that develop with trigger points: 

Nutribullet: Smoothies are nice. They're easy, healthy and the Nutribullet involves minimal effort and clean up. Sometimes prepping all the produce is too much work and I will freeze and make bags ahead of time, but I will go into that in detail in another post. 

Waterfi: So it's been made clear that exercising is a crucial part of my recovery. However, I hardly find the motivation to do it (even though I know I have to), especially when I'm having pain. When you have pain, you end up illogically justifying things because of it. (I can't even begin to tell you.) Even though I love the water, I get bored repetitively swimming laps over and over again. With Waterfi, I can swim for much longer listening to motivational music (like the "Watch the Throne" album from Kanye & Jay-Z, like the white girl that I am) and almost even makes swimming fun for me when I would normally rather just hide in my bedroom than be caught dead at a public pool, in a Speedo with a limp. 

Heating Pads and Ice Packs: This is just common sense. I've found there are certain kinds of pain that both heat and ice work for that are hard to articulate, but they do come in handy. According to Dr. Gerwin, there is a 10 min heat-10 min ice- 10 min heat strategy that helps a lot of people having and reducing bad spasms. While it didn't necessarily work for me, people seem to have a lot of luck with it. I like to get the biggest of both for maximum coverage. I keep heating pads right beside my bed because they never hurt, but can only help. I have this one. It covers almost my whole back and does the job. 

(I refuse to put a picture of a heating pad here.)

TENS Unit: If you've never had pain, seen a PT or chiropractor, you might not know what the fuck I'm talking about. This is an electric stimulation machine. Unless you want to spend hundreds to thousands of dollars on one, you can get a prescription from a pain specialist for one and insurance will cover it. This little machine is great. If you need to loosen tight muscles, it really helps. I took my script to my PT and they gave me one that is permanently mine. (Score.) You can also just rent them if you like. I have a representative from a company call me every few months to send me new pads and cords for it. 

This is not my brand or the one I use, but generally this is what they look.

Hamstring Stretcher: A hamstring stretcher is something that seems obvious to me now but, like most of the product in this post, took me awhile to end up getting. When you are hypermobile person, everything is stretchy (skin, muscles, joints, even veins, etc.), except hamstrings. This Joint Hypermobility Syndrome PDF was given to me by the nurse at Dr. Gerwin's and I reference it all the time because, like everything else I'm dealing with, doesn't have much explanation on the internet. Anyway, back to hamstrings. In my worst pain, I could only get these babies to stretch to the point of a generally inflexible man. (Maybe 60 degrees). It was the only thing I didn't "pass" (if you want to call it that) on the Beighton Score. (This link is a very basic one. There are more tests that rheumatologist and my Hopkins doctor do that include testing for Ehlers Danlos Syndrome, which is another form of hypermobility.) While this article says that hypermobile people should not be stretching before workouts (or ever) or doing most yoga (sad), they do advise to stretch the hamstrings. Bad hamstrings can lead to a lot of different things, including lower back/SI joint/sacroiliac pain. I used a hamstring stretcher similar to this. (I say "used" because my house is sometimes a black hole for all things and this was one thing that has mysteriously disappeared.) Now I mostly just use a similar one at PT when I'm in there and my hamstring flexibility is almost at 90 degrees now. Conveniently, my lower back pain has significantly decreased. 

Netflix: This goes without saying and needs no explanation. Netflix is everything. It probably deserves a chronic pain award. It might even get it's own special post later on. (Try to hold back your excitement, guys.) 

In the name of all that is holy.

These are the most crucial things I can think of at the moment. I'm sure there are more. Actually, I know there are more. I've heard good things from pain people, but haven't used them personally. I will continue to update this as I think of more/use more things that help.