How Pain Facebook Support Groups Actually Helped Me/More Ingenious Products

Like I've said in past posts, I am not one to show up to support groups and complain about my pain to strangers. Actually, unless you are my parents or best friend, I hardly ever bring it up at all unless I'm asked. I joined a few support groups on Facebook a month or two ago to share my blog and see other people's (read as: troll) comments/questions for writing inspiration and coincidentally, it became a lot more useful for me than I anticipated.

The last two weeks or so have been a little more rough than usual. A lot more trigger points have come back and I've been dealing with dizziness/nauseas spells (due to hypermobility.) Up until two weeks ago, most of my trigger points have been gone and I had generally been doing okay. But, if I would do too much, I would end up just feeling a really deep ache that still periodically made me immobile. This is a new kind of pain I was unfamiliar with and even though I know I need to go slow, I get so ambitious when I'm having a "good day", I start to feel invincible and wind up in bed for two days.

So, after a few weeks of spamming several chronic pain groups with my blog (since those are the people I want to really read it anyway), I ended up posting a question about this issue in this Facebook Fibromyalgia/Myofascial Pain Group. What I didn't realize until I joined the group was that the group admin was Devin Starlanyl, an MD who has written a TON of books on Fibromyalgia and Chronic Pain. This dumb Facebook group that I had indadvertedly joined was run by one of all the all-time authorities on trigger points and responded to every person's question on the group. For people who can't get afford the best doctor in the country (my doctor, Dr. Gerwin), she is an excellent resource.

Anyway, I digress.  Asked the question and got a ton of amazing feedback and products to help from Devin and a few others. If you're having pain similar to my deep achey pain, here are a few things that were to me recommended to help that I have bought/been using:

• Light Swedish massage (and constant communication with your masseuse to guide pressure correctly)
• China Gel - This is something a few months ago I would've looked at and considered total crap. It definitely didn't/won't help my spasms, but it's actually used by legitimate places like MayoClinic and has 5 stars on Amazon. I haven't checked the ingredients but I'm pretty sure it has menthol in it and makes it very cold on the spots where I rub it on. I love cold stuff and it's so cold, it distracts me from the pain. Not sure if that's what it's for, but it seems to actually do the trick.

• Penetrex Anti-Inflamatory Cream  -I am slightly less convinced this works as well, but it seems to do something. I usually put it on in conjunction with the China Gel and it feels like it helps with achey spots. I usually put it on right after PT.
  
• Thermosphere Heating Pad -This is the most crazy/cracked out heating pad I've ever used, and trust, there have been a lot of heating pads in my day. See the little clicker on top of the pad? You press it until the (moist!) heat gets as hot as you can stand and let go. Then, slowly, the heating pad starts to cool down and you press the clicker again. The increase and decrease really helps with the ache (and strangely enough, spasms!). It's a little pricey, but this thing is a slice of heaven. 
  
• Soft Foam Roller - Okay, proceed with caution with this puppy. Everyone that said they loved using a foam roller said to learn how to use it before you just start trying shit. Sometimes I'm immune to good advice but, surprise, turns out they are right. I asked my PT if I should use it and he said I could, so I ended up watching a lot of Youtube videos like this for guidance. Most of these moves are too intense so a lot of the time I just put it underneath me, straight down my spine or perpendicular on my lower back and just lay there and it feels pretty good. Make sure if you are still tender/sensitive you get a soft one! 
  
  
  
  
  
  Enjoy! :)

What Grinds My Gears: The ALS Bucket Challenge

I know this is a little delayed, but I feel the need to rant about the ALS challenge -- and apparently, I'm not the only one. I have seen far too many dumb ice bucket videos. The only thing happening in most of these videos is water being poured over someone and "challenging"three people. ALS isn't even mentioned half the time and I would be willing to bet 75% of the people on my Facebook/Instagram could not even tell you what ALS is. Even Steve-O is criticizing it. Steve-O wrote on his Facebook “The fact that not more than fifteen million dollars has been raised is a tragedy. It's tragic because I don't think many of those celebrities even bothered to mention how or where to donate money for ALS research. Most of them just poured water over their heads and named three random people, without including any 'call to action' which actually benefits victims of ALS at all.” He goes on to say that he is educating himself about the disease and donated $1,000.

This is really frustrating for me because, as someone who deals with rare and chronic pain, I would rather have real awareness than mass amounts of money. I don't understand why the challenge has to be pouring ice water on your head, when you could have an all around win-win, like #bloodnomination. If you think about how beneficial this is, the social media whores of the world can take their viral picture donating blood and it will actually help people with cancer. Everyone wins. 

I get that the Ice Bucket Challenge has generated a lot of money and I think that's great, but if you think about all the celebrities that are doing this, there should be so much more donated. It truly disgusts me that donating is seen as the "consequence". Maybe you don't have $100 to donate, but at least donate something. I donated to the American Chronic Pain Association too when I was "challenged."

Start video at 1:58.

I see videos like this and can't help but feel for him. I can't imagine how much that much truly suck and I really can't imagine why people feel like pouring water over their head would be more helpful than finding out what ALS actually is and donating to the cause because of it.

Make a video (or don't--I didn't) and a donation.  Rant over.

Chronic Pain Etiquette

From time to time, I have been asked by friends and family (sans pain) what is appropriate to say to me (/someone they know dealing with chronic pain) and how I would prefer to be supported by them. For a long time, I had no idea so I just went incognito for awhile (more on that in an upcoming post).

I think, unintentionally, people would say things that I thought were ignorant and generally pissed me off. I'm sure all of you reading with pain can relate and everyone that's reading that are fortunate enough to be pain free , read up, because this is some shit you'll want to know.

DO:

• Be supportive.
• Call and check on them.
• Be respectful.
• Research to better understand.
• Visit occasionally (if they are up for it, they may turn you down but it is nice to offer.)
• Offer assistance when you can.
• Tell them you care, show when concerned.
• Send things. Whether you feel like going through the effort of a "care package", a card, anything!  I love funny stuff and people send me funny Youtube videos, someecards.com cards, motivational quotes, good music, TV show and movie suggestions…whatever! I love it all and really do appreciate it. 

DON'T: 

• Make suggestions about their medication or management for pain. (I am in several groups and forums for people with chronic pain and this is probably the most bitched about subject. Everyone is different and sometimes opinions you think are valid could be counterproductive and actually do more harm than good. Best to just keep it to yourself.)
• Ask for pain medication.
• Tell them they don't "look" sick.
• Act like they are contagious. (This is really dumb, but needs to be said.)
• Say they're faking it.
• Say it's all in their head.
• Tell them to "get over it".
• Say the illness they have doesn't exist.
• Comment about their mental health. 
• Make uninformed suggestions about diet, exercise, etc.
• Assume they're being flaky and take it personally if they're forced to cancel plans. 

THINGS TO SAY: (This may be redundant to "do" and "not do" but this is a crash course on chronic pain etiquette for dummies and can't ever just assume--because you know what happens when you assume.)

• "How are you doing today?"
• "Is there anything I can do to help you make your life easier?"
• "I am here for you, whatever you need."
• "I am so sorry you are going through this."
• "I hope you start feeling better soon."
• "I really admire how you're handling all of this. I know this is difficult for you."
• "I will keep you in my thoughts."
• (If you are with them and they are having trouble moving/generally getting around) "You look like you're having a lot of pain, let me get that for you."
• "I am so sorry I judged you before I understood your situation."

THINGS NOT SAY: 

• "You need to exercise more."
• "Aren't you feeling better yet? I feel like you've been sick forever."
• "Maybe you're just depressed."
• "It's all in your head."
• "I wish I had time to take a nap."
• "If you just had a more positive attitude…"
• "I know ______ and they do _______. You should try it."

• "There's no way you're in that much pain."
• "You're just doing this for attention."
• "Work through the pain!"
• "You're too young to feel like that."
• "Just tough it out."
• "If you just got out of the house some more…"
• "You're so lucky you get to stay in bed all day!" 
• "What if you just found God?" (To anyone that's religious, I apologize. I am not a religious person and this is probably the most annoying thing you can say to me and the closest I will come to punching anyone in the face. And yes, this has actually been said to me several times---I live in "God's country", dammit.)

Enjoy! 

"Why the Funniest People Are Sometimes the Saddest"

After Robin Williams' death, I ended up being a lot more upset, in ways I couldn't imagine, about a celebrity I had never even met. Of course, when anyone commits suicide, it's an upsetting thing but there is something so deeply disheartening about it being a comedian.

Like I had mentioned in my "Finding the Funny" post, a good chunk of my time in New York was spent sitting at a long table in the back of Olive Tree Cafe with a bunch of comedians, in Greenwich Village, right above the Comedy Cellar. After being told myself from several comedians that I was "a dark and twisted person", I slowly realized that it wasn't just me. Several comedians have periodically joked with me that being a comedian is fucked up profession. You are literally on stage trying to make people laugh at you and I have learned that many comics are some of the deepest, darkest people I have ever met. (I am not trying overgeneralize all comedians. This is obviously through my own personal experience.) Everyone knows, and I have been told a million times myself, that humor and sarcasm are a psychological coping mechanism for depression, pain, trauma, etc.

If you take a look at Robin Williams' "rap sheet" (non professional resume), here's what you have: one failed marriage due to an affair Robin had (and was later sued by the woman he had the affair with for giving him herpes), second marriage failed to first son's nanny, third marriage to a graphic designer, major drug and alcohol abuse in the 70's and 80's, overweight and immensely shy kid until high school (read as: seriously bullied), complicated and terrifying relationship with his dad, fear of abandonment issues, plus his mom was a Christian Scientist (That alone is enough to screw you up). He's also made public quotes like these:

Such a sad quote for such a funny guy. 

I'm not saying what happened isn't heartbreaking, but I'm honestly not surprised. The next day (yesterday), several comedians (pretty much exclusively who I follow) started tweeting about depression and Jim Norton, a comic I have met on several occasions, wrote a beautiful article on TIME.com about depression in comics. (I made the title of this post his title in quotes for anyone that got confused.) Jim will be the first person to tell you he had struggled with depression and addiction and he also happens to be hilarious. In his article, he had mentioned "The funniest people I know seem to be the ones surrounded by darkness. And that's probably why they're the funniest. The deeper the pit, the more humor you need to dig yourself out of it." In his 25 years doing stand up, he has known eight comedians that have committed suicide.

Then Chris Rock tweeted/Facebooked this statement:

So then I looked into a little more and found out from Slate, that Laugh Factory, one of the biggest comedy clubs in LA, has an in house therapy program. Here's a quote from the article; "Two nights a week, comics meet with psychologists in a private office upstairs, discussing their problems while lying on a therapy couch formally owned by Groucho Marx. "Eighty percent of comedians come from a place of tragedy," explains Laugh Factory owner Jamie Masada. "They didn't get enough love. They have to overcome their battles by making people laugh."'

My point in all this--just because people are hilarious, sweet and look put together, they may be fighting some serious demons inside. Everyone is fighting a battle we know nothing about. Depression and all mental illnesses are invisible illnesses and if you haven't ever been clinically depressed yourself or know someone going through it, it can be very hard to relate to someone who is. In my bouts of dealing with my weird, painful medical issues, I have even been diagnosed with depression. People who commit suicide are not cowards, (Shepard Smith, you should be fired and punched in the face.) they are people who truly feel like if they leave, the world would truly be a better place without them.

Even though it may be frustrating to be a supportive friend or family member, try to do what you can.

Just so everyone is aware, here is a list of symptoms of depression and warning signs of suicide (from WebMD).

Symptoms of Depression:

• difficulty concentrating, remembering details, and making decisions
• fatigue and decreased energy
• feelings of guilt, worthlessness and/or helplessness
• feelings of hopelessness and/or pessimism 
• insomnia, early morning wakefulness, or excessive sleep
• irritability, restlessness
• loss of interest in activities or hobbies once pleasurable, including sex
• overeating or appetite loss
• persistent aches or pains, headaches, cramps, digestive problems that do not ease even with treatment 
• persistent sad, anxious or "empty" feelings 
• thoughts of suicide, suicide attempts

Warning Signs of Suicide:

• a sudden switch from being very sad to very calm or appearing to be happy
• always talking or thinking about death
• clinical depression (deep sadness, loss of interest, trouble eating and sleeping) that gets worse 
• having a "death wish" tempting fate by taking risks that could lead to death, such as driving through red lights
• losing interest in things one used to care about 
• making comments about being hopeless, helpless or worthless 
• putting affairs in order, tying up loose ends, changing a will
• saying things like "It would be better if I wasn't here" or "I want out." 
• talking about suicide 
• visiting or calling people one cares about 

These signs should be taken very seriously. Call 1-800-784-2433 for a suicide hotline, contact a mental health professional right away or go to the ER for immediate treatment.

To end, here is a quote Zelda Williams (Robin's daughter) posted after his death. Rest in peace, Robin Willams. We will always remember you as the sweet, generous and gentle soul that you are. Xx

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.

Addicts and Chronic Pain Sufferers, An Unfamiliar Similarity

So, before you rip my head my reading the title of this post, hear me out. I know this will probably be somewhat controversial but I have been thinking about this idea a lot, especially in the past year and before any addicts or people with chronic pain start sending me hate mail, just listen (err, read):

Around October last year, I went to go visit one of my good guy friends mostly because his older sister was in town and I really wanted to see her. We hadn't talked since I had moved home and had been diagnosed so she was, like most people, unaware of what was really happening to me because I had been pretty vague about my situation. Background: this girl, we'll call her "Morgan", is an addict in recovery and sober for several years now. Most of her story took place before mine even happened to me, but now she's doing great (and actually getting married this month!).

Like my situation with her, I did not know all the knitty, gritty details of her story either and what ended up happening that day was a major eye opener for me. What started out as a very generic "So what's been going on with you?" conversation very quickly turned into some really deep shit. (It's amazing when you have pain, who you end up confiding in and being close too.) I thought Morgan and I would resonate on the we've-both-had-hard-times level, but it turned into a lot more than that. We shared sentiments about feeling like we've been financial and emotional burdens to our families, relationships ruined indadvertedly because of what had happened to us and the general scariness of the future. Before either of us knew it (or expected), we were both bawling in her family's living room, hugging each other.

Now, I've known a decent amount of addicts generally as acquaintances but never really on a deep a level like I had with Morgan that day in October. Before I left Morgan's house, she had said something to me along the lines of "Wow, we really are going through the same thing! I can't believe we have so much in common going through all of this."  Initially, I remember coming home and being in shock. At first, that statement started to annoy me. I thought "Even though alcoholism and being an addict isn't really her fault, it's more of a choice than what happened to me." I didn't want to have and feel the same emotional conflicts as an addict and it didn't feel fair to me.

But then I had an epiphany and something really important came to mind: even though people with chronic pain have shitty stigmas attached to their disease, addicts have even shittier stigmas and while there are some real ignorant assholes out there who truly believe addiction is completely a choice, for the most part, it really isn't (to me and a lot of other people anyway). I've taken some real interested in addicts over the last two years (to the point of considering going back to school to be an addiction psychologist) and have done a lot of reading, talking to addicts, watching a shit ton of documentaries and picking apart my grandpa's brain (former CEO of a psych hospital in Maryland and psychiatrist) about the psychology behind being an addict. I truly believe that if you have a genetic predisposition to addiction, happen to try alcohol (who hasn't), or worse, drugs, and at the same time happen to be clinically depressed, anxious, generally have a lot of unfortunate shit going on, etc. there's a decent chance it could happen to you. I think a lot of these people are just trying to treat themselves in their own way. Now I'm not saying, if you try a glass of wine and happen to be depressed, you're going to turn into a raging alcoholic, but I really do think there is that chance with anybody. (Also, if I'm wrong about this, please email me! I would love to know more.) But just from knowing several addicts, this is my personal experience.

I also realized simultaneously, that I had been playing the victim card a lot. "This happened to me." I thought it was not at all my fault and took no accountability or responsibility for my actions. The truth is, I was not being good to myself. Like addicts with a predisposition to addiction, I had a predisposition to hypermobility. (I was probably born with it and have had it all my life but it never really bothered me until a year and a half ago.) The last few months of my job were easily becoming more stressful and I felt like it was starting to suck the life out of me. I was increasingly becoming more depressed, not working out, eating like crap and was in-between therapists. I would wake up at the ass crack of dawn, go to work, come home from work, take a nap, order GrubHub (usually Chinese or some sort of comfort food), shower and fall asleep around 8 or 9 PM. I was slowly alienating myself from my friends and just struggling to get my daily chores/errands done because all I wanted to do was sleep and lay in bed (oh, the irony). I always wonder if I had forced myself to work out more throughout the week, eaten better and had seen a therapist, if this all would've even happened to me and, if it did, would it just have been delayed more because I had been taking better care of myself. Of course I also recognize that most people could get away with this "lifestyle" I had taken on, but I always wonder if, because of the hypermobility and stress, that is the reason I ended up where I am. For the record: no doctors (not even Dr. Gerwin) can officially say how this happened to me, but my hypothesis is his best guess as well.

The most interesting aspect to me of the similarities between addiction and chronic pain is that both are lifelong things you deal with. Whether I finally turn a corner with all of my pain or my friend Morgan stays sober the rest of her life, it is always something both of us will be forced to be conscious of. She will probably go to AA meetings the rest of her life and never try to put in herself in a situation that's not good for her. I, whether I want to or not, if I have any chance of coming out of all this pain free, will be forced to continually exercise, eat well and get therapy. Even if I'm perfectly "normal" 20 years from now, myofascial pain, hypothyroidism and hypermobility are things I will always have, even if the pain "goes away", it will always be there.

The more I started thinking about all of this, the more I incidentally found things like this:

(You can click on it to view a larger image.)

The funny thing was, when I had started this blog, bored and frustrated on a Saturday night, and had relayed the message to people with chronic pain and addicts, the willingness to participate varied. 99% of all people I knew that had chronic pain/invisible illness were willing to share their stories…and not even necessarily anonymously. Most addicts were a very soft maybe and anyone I know that had chronic pain and subsequently, an addiction to pain pills from having chronic pain, pretty much shut me down entirely (even though they respected what I am doing).

Before I had "entered" the world of chronic pain, shit like this never even occurred to me. Occasionally when I would hear about people with addiction due to chronic pain, it would make sense to me and I would feel sympathetic on a very topical level, but once you start to experience it yourself, you start to look at things a little differently. Fortunately (or unfortunately) for me, like I've said before, I'm pretty much allergic to all pain killers and am probably the least likely person that would ever have a real addiction to anything (baked goods and puppies don't count), but on a much smaller scale, a few months ago, this actually happened to me. Maybe the only drug that helped me over the course of my experience with chronic pain was Ativan, a drug in the benzodiazepin class that also includes drugs like Xanax, Valium and Klonopin. (Ativan is a little bit stronger and I was taking a pretty high dose of it.) This drug was nice because it cleared my mind, sedated me a little (little things do) and took the edge of my pain.

Unfortunately, it could not take all of my pain away, but it definitely helped and I was at least taking it morning and night (sometimes mid-day depending on how bad my pain was, if I had just gotten injections, etc.). It didn't give me side effects and it felt like sunshine in pill form. I had been taking it for a few months until one day, it just completely stopped working or having any effect on me. Tried it again the next day and still…nothing, so I went off it and had horrible withdrawal effects for almost 2 weeks. These withdrawal effects included insomnia, anxiousness/irritability/restlessness, sweating, heart palpitations, headaches and dizziness. There were so many times where all of the withdrawal effects would be happening and I would look over at the Ativan bottle, knowing that it didn't even help me anymore, and consider taking one just to make all the side effects go away. This kind of hopelessness takes you to a new level desperation.

Luckily, Hollywood slowly seems to be spreading awareness for people who have addiction because of chronic pain. Ironically, right before my little addiction happened, August: Osage County came out. (If you haven't seen this movie, I strongly recommend it.) Very long plot shortened: Meryl Streep has cancer of the mouth and subsequently is a pain pill addict. At the beginning of the movie, her husband commits suicide and the family comes in for the funeral. Everyone in this family, especially Julia Roberts (the eldest daughter), simultaneously try to deal with their grief of their father/brother/uncle and Meryl Streep's addiction. Obviously I couldn't find the exact scene I wanted but this movie is filled with lots of tension. In the below scene, Meryl Streep had just rubbed her addiction in her daughter's face after a very awkward and nerve-wracking post funeral lunch.

Plus, there's always Dr. House to count on. In the show House, a common side plot deals with his chronic (leg?) pain and his consequential addiction to Vicodin. That show periodically gets pretty intense.

Luckily, it seems like this issue is gaining awareness. Just a few days ago, a friend who graduated from UPenn sent me a study Penn researchers are doing with chronic pain and addiction. For anyone reading this, whether you'd like to post your story or just send it to me, I'd love to read it if you feel comfortable sharing it. 

This what a somewhat depressing post. Here's a picture of my puppy, Sophie, at 8 weeks old that will fill your heart with pure joy. 

PS. I apologize for the long time between posts, I got caught up in baking for two days straight for a friend and I promise there is much more to come! xx

Alan

Let's all give a shout out to Alan at godaddy.com for being a true saint and helping me get my domain name up and running like a real website!

(For everyone that contacted me, I apologize for the last 12 hours of technical difficulty and malfunction! I am not a tech savvy person and I now truly understand how people get aneurisms.)

Small Gestures Go A Long Way

Like I said initially, you'll find a lot of shitty people out there in the world but there are genuinely some good eggs, some people I'm really happy to call my friends. I wish I would've saved/taken pictures of all the cards and random, amazing get well soon boxes I've gotten through the course of my time home. My friend/kindred spirit Alicia, who sent me this card above that I received today, gets me and I love her for it. Every time I read this it makes me smile which is good timing because I'm still recovering from my injections on Thursday and have been mildly cranky.

I feel like when a lot of people found out what was happening to me initially, they didn't know how to react or be supportive without feeling like they were getting trapped in a soul sucking tunnel of sadness. But the truth is, it's just nice to occasionally be reminded that people generally give a shit. 

For example, I got a call from my freshman roommate a few weeks ago. We have the kind of relationship where we are close and will always care about each other but are bad about keeping in touch. When she called me, I had missed it. (I've generally been bad about my phone since I've been incognito.) I texted her back and asked if she had accidentally butt dialed me and found out she had called because she was at our favorite singer's concert (Sara Bareilles) and purposefully called me to listen to our favorite song, Gravity, that we've probably listened to 95043609348 times together. This is such a special song to both of us and the thought that she had called me just to let me listen and know she was thinking of me made me tear up. Maybe I'm a total cornball, but I feel like I've been focusing on all the shitty people rather than all the great people that have come into my life. Not sorry 'bout the fact that this post was semi emo. 

If you don't know where this gif is from, I truly feel sorry for you.

The 411 on Getting Injections

I decided, since I got my monthly injections yesterday, it would be good to talk about what happens when you get them, what they feel like and what I do to make it through post-injection hell.

Disclaimer: If you are a squeamish person/hate needles, do not read this. It isn't for the faint of heart. 

If you had the chance to read my story, you have some brief understanding. (I try not to make myself too redundant but I'm sure not everyone that reads my blog reads everything and I don't want anyone to miss out!)

The day/night before: My goal the day before injections, since there is a chance I won't be mobile for days, is to try and get any pending chores/errands done that need to be done and shower. Try not to mentally freak out. I usually get a lot of anxiety the night before injections (and yes, I had been getting them since January and weekly). Get some sleep and eat something healthy because the next day is not going to be a good (healthy) eating day. Do not make plans for at least 3-4 days after injections. You really cannot commit to anything after you get them.

The day/morning of: Wear comfy, loose fitting clothes. (No crazy/super sexy undies either.) You'll be in a gown and chances are, your entire backside (short of your underwear) will be exposed to several different people including your doctor, several residents and whatever poor relative has to watch this happen.

I also usually bring these hilarious stress squeeze pigs along with me because it fucking hurts and sometimes I bruise my parents hands from squeezing them so hard.

That being said, always bring someone with you. Depending on where you get the injections, I could barely stand/walk/function and clearly am not fit to be driving my ass anywhere. I also got a form filled out from a doctor for a handicap tag to put in my car for those special hip injections days where walking was not happening. Once you are finally on the bed/table, before anything starts, request numbing spray. The initial penetration of the needle will be much less painful and makes a significant different when you're doing 15+ injections and acupuncture in one session.

So, before I go into what physically happens, I want to show 3 visuals to explain what trigger points actually are:

Here, you can see where the muscle band is taut, there is a contraction knot vs a normal fiber. 

When you have one trigger point and it is activated or pressed, the pain can spread to several other areas surrounding it. That is referred to as "referred pain". 

Depending on the trigger point, doctors don't always injection straight into it, but will use several other techniques to deactivate it.

Before my doctor starts, we have a chat about which "areas" we want to focus on and what spots have generally been hurting me the worst. I'll decide to focus on my sides, lower back and back of my thighs for example and that's where the injections and acupuncture will be concentrated. The needles are usually pretty long and filled with lidocaine solution, but can also be cortisone/steroid and dry needling (good for if you have an allergy to lidocaine) as well.

The technique (per 1 trigger point) usually works like this: I show him the general area where I am getting a spasm, he pokes around and when I feel sharp pain (that may also shoot to another spot), he sprays the numbing spray and injects 5 separate spots around the trigger point, twists the needle and lets it hang for a while, while simultaneously injecting the fluid to deactivate it. Sometimes when this happens I cry instantaneously, vomit, swear like a sailor, feel like I'm going to faint, or all the above. Sessions usually take at least an hour. Just an FYI, when lidocaine is being injected, it usually feels like something is hot and burning as it goes in. You can feel it.

(My doctor at Hopkins does injections differently and it is much more painful/traumatic. He takes an even longer needles and goes in and out of the muscle until it is violently twitching and then ceases. I hated this.)

At this point, I am a mess and completely fucking over it. I am ready to go home.

After injections: Once I get home, I am usually miserable and try to take a nap to compensate for what I was just forced to experience. I usually nap for an absurdly long time but when I wake up, the pain is usually worse and I am probably nauseous from having so much pain. But comfort food always makes me feel better when I am having pain. One time I asked a pain specialist at UPenn what I should do when I'm having so much pain and he said to me "eat well." Okay, dually noted, pain doctor. (I will have a post of food in the near future.)

Things I ate yesterday after my injections (for realz):

• friend egg and cheese sandwich 
• meatball parm sub from my favorite local pizza shop
• lobster mac n cheese (my parents went out to dinner with my grandpa)
• chocolate cake 
• Drumstick ice cream cone
• raisins and iced green tea (healthy for some reason? >> not normal)

No shame.

If you're home alone after you get them and no one can make you things, my easiest meal was leftovers. We always keep them in the freezer. It is really important though to drink copious amount of water though. Even though it may seem like a super good idea, drinking alcohol isn't a great solution (unfortunately). It dehydrates you and never actually makes you feel that much better anyway. Also, if you're feeling really nauseous from all the pain, I take something called Zofran. It's a pretty intense anti-nausea medication, but it works better than anything else I've tried. 

Distraction is key post injection days. For me, when pain is bad, it is hard to focus on anything. Shows about anything with an involved plot or complicated thought is usually out of the question. I keep it easy and end up watching shows as dumb as they get like Spongebob Squarepants, Rocko's Modern Life, Sex and the City (that show is dumb), Bob's Burgers, Family Guy, Too Cute! (if you haven't seen this show on Animal Planet, you need to.) or just any old cartoons you used to watch on Nick as a child, etc. (I plan on making a pain scale with equivalent, corresponding TV shows at some point for your reference in the near future.) 

Needless to say, make sure you have heat and ice if you need it and something to help you sleep. When I first started getting injections, it would freak out my entire body and then the rest of my body would start spasming after the injections (if that makes any sense--some of this shit is hard to articulate). I was and am still not sleeping well. Even though I surprisingly fell asleep relatively early last night (before 2 am) watching Too Cute!, I woke myself up from pain early this morning and was incredibly nauseous. The Zofran helps, but it's not completely taking the nausea away.

The other thing that helps: having (what I call) a "pain posse". This consists of a group of (at least) 2 dogs that will never leave your side.

These two laid beside me all day yesterday. 1) Because they're needy/a little clingy. 2) Because dogs rule. 

Usually the first and second day after injections are the worst and I always hurt the worst first thing in the morning and late at night. But, after three or four days I can tell I am slowly getting better. My best tip is to ease yourself back into doing things once you're feeling better. Don't, for example, go for a hike or take a trip 3 days after your procedure. I usually start off with, as sad as it sounds, going to the grocery store, baking something relatively easy or attempting to take my dog for a light walk. (She's insane so this isn't always my go-to thing.) The next day back at PT post injections is also a water therapy day to ease me back into exercising. (i.e. I got my injections on Thursday and the following Tuesday will be a water PT day, Thursday will be back to land exercises.)

This may all seem mundane, but it really is important to know if you have the unfortunate possibility of starting lidocaine injections. It took me a while to figure out but now luckily my recovery time is a lot shorter and lot less painful than it used to be!

Now, back to Rocko's Modern Life.