So much has been happening the past few weeks, sorry I disappeared!
Luckily, today I have been discharged from PT.
This is really exciting because I really hate PT. It doesn't mesh well with my personality. I don't do well with being constantly bossed around and naturally, I feel like I can do it better on my own.
My PT happily discharged me based on the agreement that I will be doing my own "wellness program". As much as I hate to admit it, I really do need to commit to it. Dr. Gerwin says once I'm "normal", I will have to work out 5 days/week. I gotta start sometime. It's progress, people.
At first I was really against the idea (surprisingly) of being discharged because I didn't think I was ready and am always worried about not doing things the correct way without someone watching me. But, really, when am I ever going to be truly ready?
I am actually starting to have more good days than bad and my "good days" are starting to feel like actual, real normal people good days rather than maybe-if-I'm-lucky-I'll-take-a-shower-today good days.
So, consequentially, the OCD/control freak took over and after a long night of excessive pinning, this happened:
It's not perfect yet and I will be laminating a pool excel chart so I can do all my pool exercises too (because I'm clearly insane), but my main goal is to try to go every day I feel good enough to.
Over the course of the last year, I've also found a reformer pilates personal trainer who also has hypermobility (and a great sense of humor). I'm planning on starting up with her once a week again as well as re-joining the gym. I just bought a whole new set of resistance bands to take to the gym as well as my foam roller. (I know, guys, my life is super exciting/embarrassing.)
I am also fully aware I will be "that girl" at the gym.
This process is exciting but mildly terrifying. I'm nervous to make a mistake and screw it up like I did before. My over-ambitiousness is truly a blessing and a curse. Luckily, moving on from PT has always been part of the game plan to eventually being independent, out of the house and working again.
I have been trying my best to keep busy though. I get bored A LOT. My brother was home last week and I went shooting for the first time ever. I get so stir crazy and can't do any of my other favorite adrenaline-rushing activities, so this was all around pretty entertaining for a girl who never gets out of the house.
The best news of the day: I may have an appointment (that I had initially scheduled for next May last January) on Wednesday with the leading hypermobilityspecialist at GBMC in Baltimore, recommended by Dr. Gerwin, Dr. Clair Francomano. I have been told, not only by Dr. Gerwin, that is she the person to see for JHS. Seriously praying they confirm I have it tomorrow.
If I do get the appointment, I'll recap the appointment with new helpful hints.
Have a good night everyone!
EDIT---
Someone else got the Francomano appointment before I did. Sad face. Guess I'll see her next May or until her office manager caves from harassment.
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!
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.
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
