Monday, July 21, 2014

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 shampooBatiste 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.

3 comments:

  1. Hi Erica! Thank you for sharing these, I'll definitely check them out for home. :) I'm a 30 yr old chronic pain sufferer from un-treated scoliosis (discovered too late to have many options) which is two curves at 31°/41°, so basically an S in my spine. I work full time but it's hard because my condition gives me chronic migraines, severe neck/back pain, and most of the time I can hardly sit still for very long as no chair is comfy enough. My bosses are aware of my condition and have drs notes but think I'm in better shape than I am b/c I "look" fine, which sucks. So if I tell them I'm in pain, having a rough day from it, etc, they don't believe me. I suppose that's partially my fault as I spent several years training in marital arts and obviously we ignored pain lol. :) Can you offer any tips on dealing with bosses about chronic pain?

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    1. Hi Monica! So glad you enjoyed--hope they help! :) I have a milder version of scoliosis as well so I have an S shape in my back too! What I have learned a lot about is trying to not only treat the main issue--scoliosis but also trying to individually treat all your perpetuating factors (ie. migraines, neck/back pain, etc.) I think this could be something you may be able to talk to HR about (if you have HR) to first, talk about getting you a new chair. I know a lot of people buy nice desk chairs and the company will reimburse. Make sure HR has all your paperwork from doctors too. What kind of neck/back pain do you have? Achyness? Spasms? You could bring heating pads to work, see a chiropractor or a masseuse to alleviate the pain.

      Is there anyway when you know you're having a bad day that your job would allow you to work remotely from home? (That way you can still get your work done without necessarily needing to come in.) I don't know what your relationship is with your bosses, but I'm if you explain (without having to go into detail) what you need to do to able to give them your best work, they should be understanding! My HR person was very helpful in helping me figure out how to have a conversation like this with my boss. Hope this helps!!

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  2. Hi. Coming late to this post, but love that you're sharing the knowledge. Thought I'd add my two cents.
    For any hypermobile people with thumb problems, I can recommend Push thumb splints. I initially got one ordered by a hand physio (I can also recommend hand physio) and have since bought myself a set of spares.

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