To my friends... Fibromyalgia: My Truth, My Journey

Pics, Links, and GIFs included! Neat!

Hello Friends!

   
      I've written this blog, for you, my LA friends, my Humboldt homies, and my LA family members. It's only fair that I give you a full disclosure into the reasons that I've been absent from your lives. First and foremost, please know that I love you ALL!  And I regret not being upfront about things earlier. So here goes.....

   
There's no more hiding my condition. It's not fair to me, or to you. Merely saying that I don't feel well and that I can't come out to play or visit, isn't working. It's time for the cold hard facts.

      Before I moved back to LA, I became very sick. While going to school full-time and working full-time, I started  sinking. Every day felt I as if I was fighting off the flu. My body ached more than a young person's body should. It became almost impossible to get out of bed, and then showering drained every ounce of what energy I had left. Cooking meals became nearly impossible. I eventually had to rely on my Dad to bring me food.

      Every little joint, all my bones, feel as if they are splintering. My cartridge feels like it's tearing away from my bones. My spine radiates pain thought my body. I badly want(ed) the "backiotomy" Dave Chappelle mentioned in Half Baked.

     After two months of becoming completely bedridden, I finally saw a doctor who ran some blood work. I tested positive for an unusually high ANA (Antinuclear Antibody) count;  prompting her to refer me to a Rheumatologist. From there I was diagnosed with Fibromyalgia and Sjögren's Syndrome SSB.

       Anyone that has known me long enough knows that I'm into healthy living. My old routine consisted of eating vegan and organic (still do), drinking reverse-osmosis alkaline water (still do), a strict daily exercise regimen, and herbs for any alignment. For years my kitchen was virtually transformed into an herb-based pharmacy. I ground my own herbs and pressed them into vegan capsules. I had a tincture custom made for my every ailment.

     

      I saw doctors from China, in Humboldt and LA, who barely spoke English. They would inspect my nose, pull out my tongue to examine it, listen to my heartbeat, and smell my breath. I was prescribed these exotic Chinese medicines, which when translated to English, I learned were partly herbs; but mostly bat guano, seahorse, lizard tail, and some other ingredients that wouldn't even translate. Needless to say they were not super compatible with my vegan lifestyle.

      Beyond the aforementioned herbs, there was reiki, acupuncture, yoga, and meditation. I will forever love and use eastern medicine; but the fact of the matter is that it doesn't even come close to minimizing the symptoms I face now. Also, the treatments take a lot of time, and many appointments before you feel the benefits. I'm speaking to the acupuncture and similar alternative treatments here. I can't be bedridden in between treatments and before they begin to have an outstanding effect. I need to feel better as quickly as possible; as not to live in misery. 

     

       Many well-meaning friends, who I know love me dearly, seem to know a friend of a friend who has cured themselves from an autoimmune disease by way of natural medicine. If that's the case, I certainly applaud those individuals. Maybe their cases were mild. Maybe they were able to wean themselves off of Western Medicine after years of supplementing it with eastern medicines. I don't know. I've haven't yet met anyone who treats their severe Fibro, or advanced Sjögren's, exclusively through the use of eastern medicine techniques.

      I can tell you that if I didn't have the western medicines I do now, I probably would've offed myself over a year ago. This is no way to "live" as when you're carrying this widely unknown and misunderstood curse around you're not really living. You're a modern day vampire without all the sexual undertones or cool powers.  Garlic doesn't bother me though, so I still have that going for me...

      And that's my segue into thanking those who believe in their strong anti-western medicine convictions; and care about me enough to offer up thoughts and alternative potential solutions. I say this knowing that everyone who has offered the recommendation to stay away from pharmaceuticals has meant well. I know that it comes from a place of caring and love for me. That is what I choose to focus on. The love. But please do try to understand, that unless you have walked in mine, or countless others' footsteps, you can't give that advice more than a couple times. At least not without it coming off as judgey or unsympathetic. 

      

      Someone that hasn't dealt with this personally, or directly though a loved one, simply can't understand. That's the crux about Fibro and Sjögren's. They're still so widely unknown and misunderstood by many --even doctors! People can barely pronounce these, let alone spell them. Research is still new and developing. There are no cures yet, only theories and treatments to help manage the symptoms. 

                                              I've gotten over my fear of needles

My writing hand after taking notes for class:

        I never felt like diving into it, or knew just how, to come right out and say: "Hey, I'm pretty sick, but not contagious. I love you, miss you, and want to see you. I think of you all the time. I'm sorry I can't do most of the traveling in our relationship. But when you do have the time, please come see me. Please come catch up with me. Come sit or lay next to me and talk with me. Lets get artistic or watch a movie. And when I'm having a good day, if you feel like driving, we can do something that doesn't require a lot of walking or standing. Anything, as long as we are spending time together." 

     

       It seems silly to me now, as I type this. Why I didn't just say exactly these exact words words to my friends and family earlier?  Firstly, I didn't want to come off as dramatic or attention seeking. Secondly, I always thought that I'd feel better the next day, or the next week; and could make plans then. Which is just denial on my part I guess. Because with a chronic illness that brings chronic pain and fatigue, you never know how you will feel from day to day. You don't know how you will feel upon waking each morning. For large chunks of time you feel like death; and there are good days in between those black holes. Inevitably, most of the plans I made, I broke; or kept extending. And that's not being a very good friend, or family member. I wish I would've done this over a year ago.

                       

       When I moved back to LA, I was hoping to start feel better. Through the help of: the sun, the beach,  my fantastic boyfriend, inspiring friends, bicycling everywhere, my loved ones, and the spectacular amount of things to do and places to see, I thought my spirits would be raised enough to conquer the pain and fatigue. But since I've moved back, I had very few days when I felt well enough to see my friends or family; which is a huge shame. It's seldom I get to go see all the badass concerts, or countless other amazing events here that I used to. I simply cannot stand up long enough. My good days are so far and few in between that I can barely do the essentials: showering,getting dressed, grocery runs, cooking meals, taking out the trash, or getting to my doctor appointments.

This lifelong insanely in-shape, pilates fiend, gym rat, kickboxing warrior-of-a-woman, can barely get from room to room these days...

      Also, there exists a stigma with autoimmune illnesses. It's difficult for those without the experience, to understand that just because you look fine, doesn't mean you are fine. This is where a lot of misunderstandings come into play. This is why Fibro, Sjögren's, and a handful of other autoimmune diseases and syndromes are dubbed "The Invisible Illnesses."

     I hope to find a support group in Humboldt for these illnesses. If there isn't one, I will start one. People with chronic illnesses need others to talk to others who understand. It's quite easy to feel utterly alone, in despair, isolated, and out of luck.

   

     Now I'm turning to my family for help; also to the simplicity of living in a small county. It's also easier to go to school there. Driving there is easy, parking is cheap and always available,it's easier to get assistance with transportation around campus so I don't have to walk, and Humboldt's schools are the cheapest in the nation! Finishing my degree is extremely important to me. Second only to getting my health up to par. That's worth the cold, mold, and meth....right!?

       So I find myself once more returning to Humboldt. I've come up against a brick wall. The bricks are my autoimmune diseases, and the mortar, my symptoms. This wall is keeping me from leading a financially stable life. Perpetually broke on account of the doctors and treatments. My primary doctor, rheumatologist, and pain management doctors, all cost me double my rent per month --LA rent. My medications cost me well over my monthly rent. And I'm still waiting on that Covered CA to kick in...

      I wasn't going to announce my move back to Humboldt. I was going to tell a handful of people, slip in quietly, and lay low; like I'll have to most of the time anyway. Between being sick, and full-time school, I'll be busy and tucked away anyhow. Should the mention of making plans come up as I run into people at the grocery store, maybe I'd tell a few select people. But now I've come to realize that I just kinda want to put it on blast, rather than continuously explain my circumstances to each person. It's easier, and I can include GIFs!

I need to do this in order to make it; in order to have any sort of life --anywhere. Or the misunderstanding, the loneliness, the isolation, will take me down.

And it does the same to others like me. Misunderstandings, misconceptions, and judgment can tear those down who are fighting just to get through the day. 

To others with these types of illnesses who: 

Can't sleep at night because of  the insomnia, pain, and worry that accompany Fibro, can't think clearly on account of the Fibro Fog or Brain Fog, can barely walk about their homes, who try their hardest to be present during the day; at work and while with family and friends, those who give every penny they earn to various doctors --including many crappy, unhelpful ones, therapies, and Big Pharma companies in hopes of living each day with as little pain and fatigue as possible, those who want to find others who understand, those who want to help others in their lives understand, for those who try their hardest to not let worry, anxiety, and depression eat them alive, for those trying to find hope and help anywhere they can...

I understand. I'm struggling too. I'm suffering too.

I also need to connect with others who understand. And I need my friends to try to understand.

     Venus Williams, one of the most athletic people, and woman, in history, was diagnosed with Sjögren's. She had this to say about it: 
    "I couldn't raise my arm over my head, the racket felt like concrete. I had no feelings in my hands. They were swollen [...] and [I was] fatigue[d], which was really debilitating. I just didn't have any energy,  And it's not that you don't have energy; you just feel beat up."

      And after taking an extended health leave from tennis to get better, she returned to the courts three years later. I figure that I make about 1/100 of the money she does, I can return to the courts in...Maybe there is a better way to think about it.  Or maybe we play on our own court. Many of us don't have the resources to afford the best doctors, the best care, and the best medications.

But just having support and understanding means a HELL of a lot!!!

* Here's a little about Fibro via good ol' Wikipedia:

Wikipedia
WebMD

* A bit about Sjögren's Syndrome:

Wikipedia

Sjogren's Syndrome from the Sjogrens Foundation

* Two short interviews with Williams about her struggles with and Sjögren's Syndrome:

Williams vs Sjogren's
Venus Williams opens up about incurable disease.

* Short slide show of well know people who battle Fibro. Because it doesn't mean anything until it comes from a celebrity's mouth:

A few celebrities who've come out with fibromyalgia so far, (It's been speculated that actor/actresses are afraid to open up about having Fibro for fear of losing potential work.)  

Purple. Because that's our color...