It ain’t easy being wheezy

I haven’t written in a while, and due to the current shitshow of the world, felt inclined to do so.

We all have our opinions of how it is and was handled, the politics around it, and all that other stuff, but I’m not going to get into that here.

I do want to talk about dealing with quarantine and self-isolation. I live alone, and, it is exactly as it sounds… isolating.

It was hard enough when it started. Adjusting to working from home full time, not seeing friends or family. Hell, my new niece Piper was born and I have no idea when I’ll get to meet her. Not being able to go anywhere. Not to the gym, out for a drink, Target, to the coffee shop to write, to book club… you get it. No real opportunity for genuine human interaction.

All of that was taking a mental toll. I am very fortunate to have friends, family, and technology to help stay connected. I felt myself getting depressed, anxious and really down on myself. I’ve had, and will have more, times where I sat against the wall and cried. Cried out of fear, frustration, sadness, and loneliness. And, honestly, I still feel depressed and anxious. We’re about 3 weeks in and no where near the end of this.

I’ve never wanted a hug so badly.

And then when I was getting settled into those feelings, things took a turn.

If you know me at all, the universe has a sick sense of humor when it comes to my immune system and health. For whatever reason, no matter how hard I try, I get the most fucked up health issues. (I know… that’s dramatic, it could be SO MUCH worse, but this still really sucks, okay?)

About 10 days ago I got pretty sick and went downhill quickly. I had, and still have, extreme tightness in my chest and shortness of breath. I can barely walk to the bathroom without being totally winded and feeling like I ran a freaking marathon to get there (LOL it’s about 10 feet from my couch). I can’t get through a sentence without being totally out of breath and coughing every few words. Having a phone call with me is a real fun experience right now. Not to mention the chills, fever, being totally rundown and my body feels like I got hit by a bus. A tele-med appointment with the doctor led me to getting tested for covid a week ago.

If you’re wondering about the test, it was a drive-thru test. I needed a referral from my doctor and an appointment. I luckily got the first appointment of the day and it went quickly. Everyone had PPE and Medical professional #1 came to my window, I showed him my ID and he verified my info. I drove up and the 2 nurses came out and shoved 2 long q-tips very far and uncomfortably up my nose so far my eyes watered and I was wondering if it was worth it. The whole thing took about 10 minutes, but by the time I was finished there were already 40 or so cars in line. Keep in mind, this was just the beginning of the day.

Anyway…. back to the story. After the traumatic test, they tortured me a bit more and I had to wait 5 very long days for the results.

Thank goodness it came back negative!

I genuinely felt scared. And, still do, even without the ‘rona diagnosis. Not gonna lie about it. My current diagnosis still has me scared, and I think it’s okay to admit that. Breathing issues are fucking scary.

Once I got that “good” news, I had to go to the hospital (queue minor anxiety attack) to get more tests and a chest x-ray done to see why I’m feeling like shit and can’t breathe. I found out I’m positive for the flu and bad asthma. So, I guess the best case of a shitty situation? Idk. I never thought having the flu and asthma would be good but life is weird right now.

One thing I discovered is that it 100000% sucks to be living alone through this. I’d give anything to have someone here with me tucking me in, telling me it’s going to be okay and making me tea, but right now NOT sharing is caring. Like I said earlier, I’ve never wanted a hug so badly. I’m so grateful for the tribe of people checking in on me, reminding me take my temp and dropping medicine and supplies at my doorstep. It really does take a village and I’m so appreciative of mine. Every single text makes me feel less alone in this nightmare.

I’m not sharing this for sympathy, but as a reminder that no matter how careful we are all being you can still get sick. The only place I’ve been since 3/14/20 has been the grocery store, and even that has been limited and full of social distance. That’s the most human interaction I’ve had. It’s sad, but the reality. My hands are cracked and raw from washing them so much. I am relieved to finally know what is going on with my body so I can properly treat it. And let me tell you, it a’int easy being wheezy.

So friends.. stay home. I know we all want to see our friends and family. I miss people so fucking much. My cat loves me and is getting used to me (I think… or she’s letting me think that before she carries out her plan to kill me). I want to hug my mom and siblings. I want to meet my new niece and see how big the other three are getting. I want to hug my friends and have real face-to-face conversations. I really, really just want to spend some quality time outside. But if you don’t live with someone, you sadly shouldn’t be spending time with them. That’s the main point of all this social distancing. As hard as it is and as much as it sucks, that’s what we need to be doing. The less people we are around, and the less exposure we have, the less we unknowingly spread the rona, the quicker this can all be over.

I’m so lucky I “only” have the flu and asthma. People have it so much worse, and I think of them everyday.

I know I have a long road ahead, physically and mentally. And, I feel like others out there feel the same, so I want you to know you’re not alone. If there is anything I can do from a safe distance, I’m here for you. ๐Ÿ–ค

Stay home. Wash your hands. Try and stay sane. We really are #togetherapart.

At the hospital waiting for my xray and tests. So grateful they had a mask for me. Not the best mask, but still a mask. Thanks to my recent Grey’s Anatomy binge, I kinda knew how to tie it!

-J

The Roaring 20’s

2019 was a hard year, to say the least. A bit of an uphill battle at times. But, as hard as it was, it was also rewarding, and full of learning and growth. If this year has taught me anything, it’s that I can, and will, overcome hard things.

As crazy as this year was though, I feel that I did become a bit stagnant in parts of my life. I definitely put self-care on the back burner. My health has been all over the place. My house is a mess. My social life is lacking at times. This past year I’ve lost some friends, and even more hair.

I’ve never been a person to make New Year’s Resolutions. “I’m going to go to the gym more”, “I’m going to fall in love”, “I’m going to blah, blah blah”. As I’ve said before, if there is one thing I’m consistent at, it’s being inconsistent.

My plan for 2020 is to focus on ME. To say yes to more things that challenge me, and say no to more things that don’t serve me. I saw something on Instagram recently that really got me thinking:

Go ahead and read that again. And, one more time. I am pretty confident when I say that I’m not the only one who cares what people think. This can unknowingly guide us to live our lives in a certain way to impress or fit in with people we may, or may not even, know.

In 2020, I want to start to break free from this. It won’t be easy. But I know I’ll be so much happier when I start to focus on me, and less about what others think. I am a very insecure person. I am always comparing myself to others and wondering what they think about me. “Am I funny enough?” “I’m not as pretty as her”, “I’m too fat”, and so on. That is not a healthy way of living. I need to focus less on what others think, and more on what I think. And, honestly, I bet no one is even thinking all the things I assume, because… well…. anxiety.

A friend said to me recently that life sucks, but you have to find your little corner of things and people you enjoy and do the best with it. Again, that little sentence has really stuck with me. It’s so easy to focus on how shitty life is. I’ve had a year of that. Yes, there have been great parts that I’ve celebrated and enjoyed. However, I feel like I really only talked about how hard it all was. One major thing I am taking away from 2019 is that I can still be grieving (because that may never end) but still live a happy and full life. Don’t get me wrong, by sharing what I did helped me connect with so many people and form an amazing tribe of support. I will forever be grateful for that. Writing and connecting with so many people has really opened up my eyes to things and changed my life. I don’t plan to stop writing about the hard parts of grief, mental and physical health, because I feel like it’s important to remind people they aren’t alone in it.

I plan on sharing, and living more of the joys in life. Of pushing myself more outside of my comfort zone to make new friends and connections to have in my corner. To work on existing friendships to make them even stronger, and to be there for those who have been there for me so much. To work on my mental and physical health by working with Victus to learn and incorporate new healthy habits into my life. These new habits will hopefully get my fibromyalgia stabilized and maybe even help my alopecia. All of this will 100% help my mental health!

I’ve already started on pushing myself a bit and started a book club with my friend Jen in Phoenixville (and virtually for those who aren’t local), Books and Brews. I had the idea and talked about it, and finally had the courage to follow through! Feels good to already be starting on finding my little corner of things and people.

I plan to keep this momentum going and to keep finding the things that bring me joy, and push me and scare me (in a good way, not like clowns). 2020 is going to be another year of growth and discovery. And hell, maybe I’ll even write that book!

Get ready 2020, I’m coming for ya!

-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. ๐Ÿ˜œ

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. ๐Ÿ™„

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 ๐Ÿ˜‰ 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 Catalogย 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!

The many trials… and many failures

I don’t have the best track record for sticking with things. Diets, exercise plans, TV shows… I just can’t seem to get my shit together long enough to really see things through. Maybe I haven’t found “the one” in that aspect, which is why. Or maybe it wasn’t working? Or maybe I’m full of excuses and bullshit? (Likely the case). If I’m being honest, I’m shocked that I’ve made it this far with my writing (Hey! Maybe I did finally find my thing!… If only it would solve ALL of my problems!)

Over the years I have tried approximately 69,420 things to cure, maintain, and manage my physical and mental health. A few things have helped, but nothing really gave significant results. Granted, a lot of this is due to me not following through on things (like diet and exercise). But, mainly I’ve had many failed doctors and medications. Since modern day medicine isn’t helping, I decided to start from basics. My diet. I hate the word diet. As long as I can remember, I’ve hated the way I look. I’ve never been happy and comfortable with my weight, so mentally when I tell myself I’m on a “diet”, I immediately just tell myself I’m going to fail. I’m my own worst enemy.

That’s why I’m going into with a different mindset this time.

I’m not going on a “diet”. I’m not doing this for the sole purpose of losing weight to look better in my jeans (although, I won’t be mad if that happens). I’m doing a lifestyle shift. I’m not telling myself I can’t have anything, but I’m going to remind myself that there are some things I probably am better off without. And, the golden rule…. everything in moderation. I’m doing this knowing that my life, my health, and my future depends on making small, conscious, healthier choices.

Not only am I banking on this to increase my physical health, but also my mental health. By eating better, I know mentally I’ll feel sharper and hopefully get rid of some of that “fibro fog”. The book I’m using as a guide even breaks the weeks out:

  • Week 1: Pain Management
  • Week 2: Gaining Energy
  • Week 3: Fighting the Brain Fog
  • Week 4: Promoting Healthy Digestion

My life will benefit greatly from improvements in these 4 areas, so I’m actually excited to give it a shot. Nervous, and terrified, but excited overall. I’ve been to countless doctors and have had so many procedures and tests over the years for these 4 areas, that I don’t only want, but need to make positive changes. I need something to work. I need a miracle. (I need to be my own miracle, really.) I need to prove to myself once and for all that I am capable of generating my own happiness. And, becoming healthy is the place to start.

*Shout-out to my friends recently who have been talking to me about your own journeys with changing your diet for better health (for various reasons) – you guys really inspired me to really tackle this!*

My plan is to start Sunday. I already have my week 1 menu planned, and even made an organized shopping list. I really don’t even know myself right now. If anyone else wants to join in for accountability, let me know! I’d love to share my menu! (There is more per week than I’m doing, but I’m one person so I’m planning more leftovers than the guide calls for).

I know I won’t be 100% with it. And that’s fine. But, I plan to be conscious of what I’m eating and drinking, which is a huge change for me. I’m also going to track what I’m eating, and note any changes in my symptoms.

So, please hold me accountable. Encourage me. Cheer me on. Pray I finally get some sleep.

Thanks for the support!

-J