Good things come to those who keep fighting

About 14 years ago I was “officially” diagnosed with fibromyalgia, depression, anxiety, and insomnia. This was after years of dead-end doctor appointments and being told that I’m “just a moody kid going through growing pains”. Well, first of all, at age 16 I was pretttttty sure I was done growing. No one knew why I was in constant, excruciating pain. And, no one really wanted to give me, or my parents, the diagnosis that their kid is a little f*cked up.

When I finally got my diagnosis I wasn’t as relieved as I thought I’d be. I was embarrassed. Mortified. Mental health was not widely talked about or accepted. I was diagnosed with a chronic pain syndrome that was normally found in people twice my age. I could go on A LOT about the issues with the mental health stigmas in our society, but that’s a whole other blog post. But, I will say this: If you, a family member or friend is struggling with their mental health, do not hide it. Do not brush it off. Do not be judgmental. Talk about it. Be a support.

Anywho, back to me. So, since my diagnosis I have tried a wide array of medications. Some multiple times with different doses. Just to name a few off the top of my head:

  • Cymbalta (duloxetine)
  • Lyrica
  • Lexapro
  • Gabpentin
  • Amitriptyline
  • Trazodone
  • Meloxicam
  • Topirmate
  • Naltrexone

All of that, and nothing worked. Some made me sick, some made me feel nothing. But nothing took away the pain, made me less anxious, or made me feel a little bit alive. I wasn’t sleeping for more than 45 minutes at a time (and still am not).

So, after a long struggle, I am happy to announce I am finally certified in Pennsylvania for Medical Marijuana.

Yes, some people don’t believe in it. No, you can’t get addicted to it.

I went to an informational workshop at Victus Health and Wellness Center in Phoenixville, PA led by Dr. Jeff Katra. He isn’t just a PCP, but actually specializes in cannibas and opiod medicine. So, he knows it all. It wasn’t just about medical marijuana. It was about the history of marijuana. It was about CBD. About how they work together. It was about how safe it is, and how different it is than other options. It was about the science behind it all. I feel so well informed going into this decision. So, I’m going to share a little bit of that knowledge here, but, I highly recommend Victus (or at least talking to a professional).

Isn’t a marijuana plant just a marijuana plant?
Nope! There are 2 different types of marijuana plants:
– Indica: more sedating
– Sativa – more stimulating

Okay, so there are 2 different plants. But, what else makes medical marijuana special?
I am SO glad you asked! So, medical marijuana is made up of THC and CBD. Which work well separately, but the real magic happens when they work together! (A little metaphor for life, eh?). Different combinations of THC and CBD can give different results. Want a little extra somethin’ somethin’? There is also something called terpenes which is an organic compound that adds different flavor and results to the combo.

Since it’s medical, does the marijuana stay in my system?
It’s medical, not magic. So, yes. It does stay/show in your system. So it will show during a drug test (for work, DUI/DWI, etc.) Again, there are different strands, so you can find ones with a higher CBD to use when you need to be a functioning member of society.

Are there side effects?
Yes. Again, all depending on how hard you hit the THC, but can make you anxious, bronchitis if you smoke it a lot, dry mouth, change in blood pressure, lethargic… and, the pizza place’s favorite… the munchies.

How addictive is it?
It’s not.

So, since it’s legal in PA I can do whatever I want?
You do you, but, it’s not recognized in all states or at a federal level, so don’t be an idiot.

Cool. So, you gonna throw it in a joint or a bong?
Ummmmm, no? But you can. There are plenty of options. Let me break it down a little for ya:

  • Smoking flowers: you’ll feel it in 5-10 mins. (Don’t break up flowers with your hands because you’ll get the oils all over your hands, and not in your joint like you need. Use scissors.)
  • Vaporizing flowers: (not like the usual vape, you put flowers in a thing and then inhale the smoke from that… I am not explaining it well, but this does) Rapid and efficient, you feel it in 5-10 minutes.
  • Vaping cannabis oil: This was recommended for me. The most common form of vaping I’ve seen (but safe, not like this stuff on TV that people are getting from non-regulated places). Studies show it is probably safer than smoking it, but, nothing in life is guaranteed.
  • Cannabis tincture: This was also recommended for me. Takes 15 to 30 minutes to hit your system.
  • Edibles: Also something I’m into. You can put it in butter, gummies, brownies, cookies, etc.. Just be sure to mark them as such, especially if you have roommates or kids. (Dr. Jeff also gave me a recipe for cannabis butter, so…. he’s speaking my language on this one)
  • Topicals I have tried THC lotion and I am telling you that shit works. Obviously it wears off, but, oh my. It works. Within minutes I felt my pain subsiding. WHAT?! I know. It’s never happened like that.

Awesome! But, how much do I take?
Due to vaping, smoking, cooking, etc. it’s hard to take a “dose”. It’s recommended to do trial and error and take small amounts until you feel it, and take it from there.

How do I know what strain to take?
There are A TON of strains. I’m not going to list the whole document I have, but, you can definitely research online and at your dispensary. The dispensary will be able to recommend for you based on your condition(s) and what you are looking to get from it.

  • Fibromyalgia: Harlequin, Purps
  • Neuropathy: (Also tied to fibromyalgia) Harlequin, Cannatonic, ACDC, Cookies
  • Migraines: Gorilla Glue, Purple Haze, Blue Dream
  • Anxiety: Blue Dream, Sour Diesel, Purple Haze, ACDC, Suzy Q, Bubba Kush
  • Depression: Tangerine Dream, Bubba Kush, Zeta
  • Insomnia: Grape Ape, Purps, Hindu, Bubba Kush

My insurance covers this, right? I have the good plan.
Unfortunately the consultation to get certified and the products are not covered by insurance. And, it’s not as cheap as the prescription pain killers. However, it is going to be well worth it.

All this has been great but how do I get it?
Excellent question. First, you register on the PA medical marijuana website. You register, then see the doctor for the consultation. If they certify you, they will log into the website and put in some info. Once that is in, you’ll get an e-mail, pay the state $50, and get your card in about a week. (I will be stalking my mailman.)

Hopefully you found this interesting or helpful. Message me if you have any questions, and if I can’t answer them I will certainly do my best to point you in the direction of someone more qualified than I am.

I am just so excited (and honestly nervous) to finally have relief. I’ve spent about half of my life feeling like this, and can’t even imagine the new life ahead of me. I imagine something like this:

Until next time, when I’m hopefully in less pain, less anxious, and well rested. (For real y’all. I can’t wait to SLEEP. I don’t even know what 2 hours of solid sleep feels like.)

-J

What the f*ck is fibromyalgia? Part 2

It’s been a minute since I really, and I mean really, broke down some more fibromyalgia facts with you all. So, I figured why not share the really embarrassing stuff that no one really enjoys talking about?

(Let’s be real, I no longer care or have shame.)

So, if you read the OG “What the f*ck is fibromyalgia?” post you learned all about the pain, exhaustion, swelling and mental health struggles. I know. How could there be any more fun?!

Well, buckle up.

*Disclaimer: we all know I am far from a doctor or expert of any kind. So, all of this is what I deal with, and what I’ve researched and talked with my doctors about.

IBS-ish

Let’s just get right to it. Somehow fibromyalgia causes some fun stomach issues. Discomfort, pain, bloat, constipation, not constipation, sensitivity issues. (Don’t worry, I pulled this from my online dating profile).

Some days are totally fine and others are honestly pretty shitty. 😜

Hair loss

This is a very serious issue for me that just rapidly occured in the last week. I wasn’t that cute with my big ol’ bald head when I was a baby, and really don’t think I’ll look any cuter now. But, I went to the doctor today and he confirmed this is very common for people with fibromyalgia, but, per usual, has no idea why. Thankfully he’s not letting that be the answer and ordered a full panel of blood work and referred me to a dermatologist.

So, fingers crossed we get this figured out. Or, who wants to go wig shopping?

(In all seriousness I didn’t realize how vain I actually am until the bald patch on my head decided to show up)

Itchy hives

Chicken pox, but make it constant. Ok, well, not constant but a few days a week I have random hives for no reason. I’ve had alllllllll of the allergy tests, so please don’t @ me about that.

Its even better when they are on my face. So attractive.

Easy bruising

Like a peach. Sometimes I feel like I look at a sharp corner and BAM! I have a bruise on my leg. I swear, each week I have about 10 unexplained bruises.

Sweating

As dad would say, “like a hooker in the front pew of church.” I’m never cold. Like, it will be snowing outside and my windows are open. I feel like there isn’t enough deodorant some days. It’s also a bit challenging when heating pads help the pain, but come on, it is HOT.

I also have an irrational fear that I smell and no one tells me, so you can imagine how fun this symptom is. Have I mentioned I have anxiety? No idea why. 🙄

Flushed face

On the plus side, my blush lasts me a long time because I don’t need to use a lot of it. But, I also look warm, uncomfortable and embarrased. Which, now that I think about it is how I feel most of the time.

Twitches and muscle spasms

I’m not always just winking 😉 Eye twitches, arms, legs, you name it, and it’s spasing. The most fun is when it causes me to knock things over. Or, even better! When my hand twitches as I’m holding, I don’t know, a mug full of hot coffee and then I drop it all over the place. (Moment of silence for all those lost mugs)

Allodynia

This is a weird one, and please dont stop hugging and high-fiving me. But this fancy-ass word basically means it hurts to be touched. This is most common for me with unimportant things like clothes and shaving my legs.

(I love hugs, so keep ’em coming! Really, I don’t feel like I get that many which is sad and embarrassing but I’m going to share it anyway!)


I hope you enjoyed this second installment of the “What the f*ck is fibromyalgia?” series. Hopefully this provides some insight into my life, and some others who you may know. Really though, it could be a lot worse. I am fortunate that my fibro is more or less under control, without medication. I know that not everyone is that lucky, and I do my best to not take it for granted.

Next time you see me, give me a hug and tell me if I smell.

-J

Please feel free to browse through my blog for other posts, or check out some articles I have written for Thought Catalog here.

We all float down here…

Over the past 13 years since being officially “diagnosed” with fibromyalgia, I’ve been open to trying pretty much anything for some relief. Lately I’ve been hearing a lot about float tank therapy to help with fibro, among many other things, and have been curious about it. So, when a good friend of mine found a Groupon deal for them at Stillpoint Yoga and Float, I was excited, interested and a little nervous.

We finally gave it a try today, and here is my experience!

What is float tank therapy?

Float tank therapy is where you lay in a bathtub-like pool either in your birthday suit or your bathing suit, whichever you feel most comfortable in. (Don’t worry, it’s a 100% private room) You do exactly what it’s called – you literally relax and float in a tub filled with about 1,200 pounds of Epsom salt and water. Think about when you’re in the ocean and buoyant. It’s like that, but super concentrated and powerful. All of the research I’ve done (and now, personal experience) shows that anyone, no matter shape or size, is capable of floating. The water is set to the temperature of your skin, so it’s not supposed to feel hot or cold. It was comfortable, but toward the end it started to feel hot, as if I was in a sauna. It also is said to work best with total sensory deprivation, which definitely made me nervous. I feel like I’m way too anxious to be left alone in total darkness and silence with just my thoughts. But, since the experience is all about you and what you prefer, you have options to have soft lighting or no lighting, and music (spa music or you own) or silence. There are also ear plugs available to help keep sound, and water, out of your ears. Note to self – use the ear plugs next time

Are there any benefits other than fibromyalgia relief?

YES! So many benefits. Here are some of the other benefits listed on the website:

  • Stress relief
  • Depression
  • Anxiety
  • PTSD symptoms
  • Eliminate addictive behaviors
  • Eating disorders
  • Increased energy
  • Alleviate physical pain
  • Headache
  • Lower blood pressure
  • Relieve PMS symptoms
  • Headache relief
  • Improve sleep quality
  • Increase motivation
  • Improve concentration
  • Meditation practice
  • Personal growth
  • Elevate mood

Since there is significant magnesium absorption, it can also help prevent cardiovascular disease and create healthier bones and teeth.

As I was reading this I was checking off almost all of the reasons I’d want to try it. Fibromyalgia? Duh. Anxiety? Yes. Depression? Yes. Increased energy and improved sleep quality? HELL YES.

**I feel like I need to say, that I am clearly not a doctor of expert of any kind, so this is all based off my research. Also, as great as this can be, it’s not a miracle box and to see long term and lasting results, you need to go more than once. Everyone will have different results and with most things in life, nothing is guaranteed.

What are the rooms like?

Don’t let the fact that they are located in a business park throw you off. As soon as you walk in the doors, you are transported into a spa-like atmosphere. It’s clean and beautiful with essential oils diffusing and soft music playing which will instantly make you feel welcome and relaxed. If it is your first float, or first float there, they will give you a full tour to make sure you feel comfortable and ready for your experience.

The float rooms each have their own name and little decorations to make them unique, but the tanks are all the same. You walk in and there is a large bench, shelf, and little amenities to make it personal and comfortable. There’s also a sign with the overall guidelines and tips and a basket with a mirror, ear plugs, makeup remover and petroleum jelly to put on any little cuts or scrapes you have. (Definitely do this recommendation. You really can feel even a paper-cut.)

Before you float, you use the provided shampoo and body wash to get any dirt, deodorant, etc. off of your body so that you don’t contaminate the pool and so that you get the maximum results. After the float, you shower again to get all the salt water off but can bring your own toiletries if you prefer. The shower is right outside the float tank, so it’s so easy to get in and out.

Also in the float tank is a halo pillow you can use to help support your head and neck, which I did end up using. There is also a spray bottle with clean water and a towel, so that if you get salt water on your face or in your eyes, you can easily wipe it off.

How did it go?

I went into this experience with the least amount of expectations possible. Everything I read seemed positive but I didn’t want to give myself false hope.

When I first got in it was a weird feeling. I laid down and took a few minutes to get settled. I started with the light and music on, and ended up turning them off. I wanted to try and go for full sensory deprivation. It took me a long time to feel like I could settle my mind. Like I mentioned before, I am an anxious person and being left alone in silence with just my thoughts went exactly how I expected it to. I was thinking about life in general, this experience, how my friend was doing in her’s, and then anxious that I was too anxious and not enjoying it enough. After a little while more, I felt my body start to relax a bit. My arms, legs and back all felt like the tension was leaving and it was a feeling I haven’t experienced in a LONG time. I had issues getting my neck, head and shoulders to relax but I tried not to focus too much on that. Those areas hold most of my pain and trigger points, so I’m not surprised that I couldn’t really let that go on the first try. I don’t know if I fully fell asleep, but I did catch myself lightly snoring a bit (so attractive, I know) and doing that thing where your arm or leg twitches as you are falling asleep. Research shows that an hour of sleep in a float tank is equivalent to about 6-8 hours of normal sleep. I’d love just a fraction of that.

From an anxiety and mental health perspective I definitely got in some good thinking and soul searching. I left not feeling overwhelmed or anxious, and have an improved outlook on things from the time I spent really thinking about things.

In conclusion

Overall, it went well. If nothing else it was an hour totally unplugged from all outside distractions. It was relaxing (eventually) and I did notice an improvement in my fibromyalgia symptoms. I felt a bit rested, but also tired, as if I spent a whole day in the sun.

I definitely would benefit from doing it again. Next time I will know a bit more what to expect so I won’t be as anxious and will be able to get into the relaxation phase sooner. I also feel like the more you do this, the better the results. I may also do a 90 minute float next time go give myself a little cushion of time in case I am feeling anxious and have trouble settling in again.

If you have any questions or want to try it for yourself (and are in the greater Philadelphia area) definitely check out Stillpoint Yoga and Float. They can answer any questions you have and get you setup with a session. Tell them I sent you!

Week 1: A week of learning

If you read my last post you know that I am starting on a path of healthier living. I went into this knowing that I am not going to be perfect, and that it’s all about learning and putting forth a conscious effort. And, as expected, week 1 was far from perfect.

Saturday I got up and hit the grocery store with my shopping list. I bought everything I needed for my meal plan. When I got home and unloaded everything I realized that I maybe over-planned. Which I did. Luckily, I can roll some of last week’s ingredients into this week.

Next hiccup: waking up Sunday morning with a migraine. Not planned. Not fun. I still managed to prep 2 meals, but due to the migraine I didn’t eat too much.

Here are some of my favorite meals from week 1:

Turkey, pumpkin and swiss chard hash. Recipe called for cubed pumpkin, but all I could find was pureed pumpkin. Still tasted good!
Chicken chili soup. Recipe called for a spoonful of plain yogurt on top, but I liked it better without. Definitely will be great in the winter!
Hands down my favorite of the week. These simple sweet potatoes and brussel sprouts are incredible.

So, am I feeling drastically improved after week 1? The week of decreased pain? Definitely not. I didn’t expect to after just 1 week of a semi-improved diet. I know I wasn’t 100% by-the-book on week 1, but like I said before, I knew I wouldn’t be. I don’t want this to be a quick fix, so I’m not going to be too hard on myself.

This week I have some simpler meals planned. But, ironically, due to another fibro flare-up, I haven’t gotten to the grocery store yet. But, I guess that is part of why I’m doing all this. Trying to not get frustrated and listen to my body and rest it when needed. It’s just as tough mentally as it is physically. I have so many ideas, goals, and things to do, and it’s so hard when my body has other ideas. It’s hard not being “normal” sometimes. It’s hard asking for help. It’s just hard some days.

So, week 2, I’m ready for you. Just as soon as I pull myself off these heating pads…

Happy Sunday friends!

-J

Shit. Is. Happening.

Good Shit. Don’t worry. Exciting, optimistic shit is finally happening.

For the first time in what feels like forever, I am optimistic about my fibromyalgia. Honestly, I never thought I’d get here. Don’t get me wrong, it’s all ideas that are causing this optimism, but, it’s optimism nonetheless. Let me tell you why!

The other night I stumbled upon a documentary on Hulu called “Can we cure”. (Surprisingly I watched something that isn’t about true crime and murder.) If you deal with chronic pain of any kind, or are close to someone who deals with it, I highly recommend you watch it. It’s only a few episodes, so you’re not dedicating a ton of time to it. Here’s the overall gist: 2 girls, around my age (31) both dealing with different types of chronic pain, and trying to manage a normal life (work, dating, friends, exercise, etc.). They live in LA, and found a clinic in Boca Raton, FL that specializes in a new treatment for chronic pain. Basically, the treatment is 3 parts: Detox, Laser beams, and Mental Therapy. All necessary. First, they do a cool test to find out what toxins are in your body causing the chronic pain. (IT’S NOT MADE UP. IT’S NOT “JUST FIBROMYALGIA”. THERE IS A CAUSE!). I’m getting ahead of myself here, but I’m now convinced that my pain isn’t just my pain, and there is something in my body breaking me. Once they detox you of the shit, they essentially start zapping you with lasers. Fact: Every minute, 96 million cells in your body die, and 96 million cells regenerate. (Where are my Doctor Who fans?!). So, muscle memory. If you have bad cells, that’s all your body knows. So, bad cells die, bad cells are born. It all makes so much sense. But, with lasers, your cells are being treated and healed as they regenerate, which helps with your pain because you are then creating healthy cells. MIND BLOWN. (The documentary explains this so much better, I swear. Watch it.) Next, you need to get your mind right. When all you know is pain, it’s hard to snap out of it and realize that you can actually feel different. You need to forgive, and move on. Forgive the doctors, the friends, the strangers, everyone who doubted, questioned and belittled your pain. Which is hard. And not easy. Especially for those who have their chronic pain caused by some type of trauma. But necessary for overall healing. By the end of the treatment, the girls were improving drastically.

And let me tell you, I was inspired.

So, what did I do? I looked up the place! Obviously. The place is Carmen Care Laser. Them being in Florida, and me being in Pennsylvania, it’s clearly not the most realistic situation. But I decided to reach out. What could it hurt? I sent an email, just asking about their experience with Fibromyalgia, gave my backstory, and even let me know that I’m in PA and this was more of just a curiosity email so if they had paying business to tend to, please do not waste their time on my questions. Even so, I immediately got an email back, which turned into the best phone call I’ve had in a very long time. Leslie is so nice, caring, real, and informative. We talked about what they do and what I’ve tried. We talked about my medical history and possible toxins that could be causing my pain. She gave me so much advice and insight. As we were talking, my writing came up. This is where things got even more exciting. She gave me one of the the MOST GENEROUS offers I’d ever received. She offered to treat me on their full 21 Day Program FOR FREE. All I had to do was get there, get lodging, pay for some food, and write about it. Is this real life? Unfortunately, she can only offer that until mid-September, because then they are fully booked up again. So, right now, that isn’t in the cards for me. I can’t imagine going into work and suddenly being able to work remote for 3 weeks in Boca Raton. But, she still offered to be a resource for any questions I have and said if I can’t get there now let’s stay in touch and see what the future holds. Hero.

While talking to her, I told her about the 4 week fibromyalgia diet I am embarking on starting tomorrow. If there’s one thing I’m good at, it’s quitting diets and exercise plans. So, like I said before, I am going into this not as a diet, but as a lifestyle change. I know I am not going to be perfect, and I’m fine with that. I went grocery shopping today and got everything I need for my week 1 menu. This is definitely the most grocery shopping I’ve done in a very long time.

My body will be shocked. Not only will I be eating breakfast, but I’ll be eating 3 healthy meals in a day. Yes, I’m still going to drink coffee. Yes, I’ll still be enjoying a few beers. I’m human. As I’ve proven time and time again, I’m not perfect. I am walking into this with balance and the mindset that small changes will add up over time. (So please don’t @ me with “you’d see more results without coffee and alcohol”). Again, I’m not planning on this being a short-term diet, but a long-term lifestyle change. So, I’m keeping the things I enjoy. Black coffee and craft beer. (And PBR, because, come on… it’s me.)

I keep my beer next to my greens to remind myself of balance. #lifehack

I’m going to be sipping my beer and continuing to make shit happen on this hot-ass Saturday. I’m going to get my mind ready to head into Week 1: Pain Management. Foods all designed to help reduce inflammation. I’ll be tracking what I’m eating, and how I’m feeling. I’ll update the end of week 1 while I prep for week 2! Stay tuned!

Cheers!

-J

LOL I moved inside. I was getting sunbunt, in the shade, within 10 mins. Thank you pale Irish-German skin.