A Small Start To A Very Large Project..

I have a new tattoo! 

I got the door to Valhalla tattooed on the back of my neck last week, and it is a small start to a very large project- Viking back piece. 

The next session will be a ship on my lower back. [Tramp stamp! LOL] 

I love getting tattooed for a lot of reasons. Not only does it look cool, but it helps with my fibromyalgia. A few hours of physical pain usually means I don't feel any FM pains [or significantly less] for several days. It feels so good! LOL Better than any drugs the doctors can give me. 

Speaking of, they want to give me steroid injections. Umm, no. I don't feel comfortable with that. While pain pills aren't a healthy way to deal either, I can at least control my use. Multiple steroid injections, right into my muscles, every few months or so.. NO. [I don't need to grow a second head or a tentacle or whatever.] 

What Am I Doing With My Life?

This is a personal question I'm facing a lot right now- "What are you doing with your life?" 

And... it's complicated. 

I have fibromyalgia, which affects my entire body. There is no known cause, and no cure. Chronic, full body pain is something I'm going to have to live with for the rest of my life. 

This year it has progressed to my hands and fingers, all the way down to my toes. I have become disabled, however the government doesn't recognize that [yet], and I am learning to deal with the severity of my condition. 

"I'm 28 years old and physically disabled," is not something I can say without wanting to cry. 

You wouldn't know by looking at me. I look normal, healthy, happy. And I am.. but I also have a lot of problems. I can't relax [or exist, for that matter] without being in constant pain. There are [many] days when I can't sit, stand, nor lie down. 

I'm on several medications [4 right now, 2 of which are controlled substances], which do help, but not completely. I figure any day in which I'm not lying in the fetal position, crying uncontrollably, is a good day. 

I can't hold a 'real job' right now, and no one in their right mind would hire me in this condition. 

And so, I've found this to be the opportune time to make use of my talents and do what I love- music, writing, clothing, makeup, photography, modeling... I do what I can, at my own pace. There is immense pressure every day to do more, and it's hard, but I do my best. 

I also take time to educate the world about fibromyalgia, and support others who have it. 

FM has taken over my entire life, and I just try to stay focused on getting through one day at a time. It's not easy, and never will be. I never did anything to deserve this condition, and am probably the last person I'd expect to have it. But that's life- always throwing curve balls. 

Despite the problems, having FM has made me a much stronger person mentally. Every day I have to see beyond the pain, to the more important things. 

I get a lot of help, especially from Gary, and I am so thankful I have people in my life who understand [or try to]. Having someone there, to listen, is the best help in the world. <3 

So what am I doing? Living. One day at a time. 

Gratitude #7

It's been another crazy, eventful week. From hiking to gardening, I've been keeping busy. 

But today, I just want to relax. I called in "sick" to my physical therapy session today, because I can't bring myself around to get up and go. Not that it's a huge task, but it's a lot for me to deal with right now. I'm worn out. Utterly exhausted. I need a break. 

That's the thing about FM- you never know what you're going to feel at any given moment. You can feel great, then 5 minutes later you can be on the floor in agony, then falling asleep while talking 5 minutes after that. It takes a lot out of you, and you have to learn how to conserve your energy for the important things in life. It's not easy. 

Fortunately, I get a lot of help from Gary, and other friends, and that means the world to me. 

<3 

Musewear flipflops! 

my friends/family/readers/fans all over the world 

lots of FM support on Twitter! 

outdoor exercise 

matte black nails 

journaling 

paranormal investigation 

jewelry making 

clothing DIY 

fuzzy blankets 

cuddling with furry friends 

organic coffee 

Gratitude #6

It's been both a very wonderful and rough week for me. 

I went on a great Memorial Day hike and grilled vurgers [veggie burgers] with Gary, and wound up with terrible blisters, but it was totally worth it! 

I was also overworked at physical therapy last Friday, which spurred a horrible upper body FM flare-up that I'm still paying for today, even after mild exercises and an ultrasound treatment at the following session, yesterday. 

And to top it off, I had blood taken yesterday after PT, which made me extremely tired and weak because it's that time of month, so I'm experiencing blood loss as it is. 

How exhausting! 

But, as always, I have a lot of things to be thankful for.. 

<3 

beautiful, bright flowers! 

free Coppertone sunblock - Sun protection is super important! 

Lots of support on Facebook due to my latest FM post. Thank you, friends! 

Despite my physical ailments, I can still experience the beauty of the natural world. 

Garlic and broccoli pizza! My favorite! 

Margaritas! 

wearing flipflops - I love that free feeling on my toes :) 

I have a very cool and sympathetic primary doctor who loves tattoos. 

fun, colorful sunglasses 

my wonderful BF who supports me in everything I do 

Living With Fibromyalgia

I've written about having Fibromyalgia here several times before, but never really explained what it feels like to live with it. 

If you follow this blog, you'll know that I am very fit, I eat well, and hike long distances on a regular basis. I'm generally a very happy and driven person with big dreams and goals I aspire to. I'm an over-achiever, and appear to have everything working in my favor. I don't look sick at all. In fact, I'm healthier than most people.

But I have a horrid condition, and most people can't even fathom the pain I endure.

There is a very good reason I'm always out hiking- I can't EVER relax. I can't be still without hurting and my muscles tensing up. I have to be constantly moving [but not repetitive motions], and stretching, and massaging my muscles, and half my week is spent at physical therapy and doctor appointments. I'm exhausted, but the moment I stop moving is when the agony sets in. Before I started taking meds, I used to wake up, crying, every single night because the pain of being still was too much to bear. Sleep was impossible.

There is no cure, and this is a condition I'm going to have for the rest of my life.

Part of the reason I get tattooed so often is it can be considered a coping mechanism, a more hardcore acupuncture, replacing one [widespread] pain with another [concentrated] for a little while. It hurts so good, and I find a lot of relief in it.

I consider myself lucky- I have a boyfriend who believes me about this "invisible illness" and supports me in everything I do. He cooks for me every day and tends to me when I can't bring myself to do the little, necessary things in life. He doesn't complain, and always gives me the emotional support I need.

A lot of people with Fibromyalgia don't have this kind of support. I've read about so many marriages falling apart, mothers being unable to care for their children, friendships lost, people losing their jobs, etc., because no one understands what is really happening to these people who suffer from this condition.

What FM looks like if it were visible:

I've heard about so many young [and middle aged], beautiful, strong women [and men] committing suicide because they can't bear the physical and emotional agony that comes with this condition. Things like this make me very sad, and I invite anyone with FM to contact me. You don't need [or deserve] to struggle with this alone.

Living with Fibromyalgia is not a choice. It's something we just have to do.

Gratitude #5

I didn't do a gratitude post last week due to bad fibromyalgia flare-ups, but I finally saw my doctor on Monday [2 days ago] and got prescribed an interesting concoction- Lyrica, Cymbalta, Skelaxin [as needed], and Norco [for the month, until the Lyrica kicks in]. It feels like a party in my head [LOL] and already it's working wonders for the pain. I'm feeling really positive about this so far, and it's not the drugs talking! Right now I'm getting the best sleep I've had in the past 5 years or so. It feels amazing.

Thanks to Influenster [contact me for an invite], I recently received the #GoVoxBox [with items from Playtex, The Vitamin Shoppe, Aqua Spa, Profoot, and Blue Diamond] in the mail, among a ton of other products from other brands, which I will be reviewing here in the near future.

<3
My new Aqua Spa lavender + chamomile lotion feels and smells amazing!
I'm starting to feel so much better! :)
I haven't had to buy anything but food + meds lately.
Long walks in the mountains.
Butterflies!

"Bitch, tell me how you not a hobbit again?" LOL

Diary: Rollercoaster Weekend

What a weekend it's been! 

I'd been feeling pretty good lately, and was ready and excited to hike up to Tanglewood Nature Center with Gary to participate in the prize drawing for the Golden Shoe Contest. 

No big wins for us, but we got a frisbee to play with! 

[Follow me on Instagram!] 

We hiked down the mountain with ease [the whole trip was about 13 miles] and I felt great. 

But later, around dinnertime, the sharp pains I feel mostly in my back [every single day] started growing more frequent and intense. The pain spread to other areas within the hour, and despite the Skelaxin [muscle relaxer], my muscles started tensing up in my back, neck, and between my ribs. I [finally] have an appointment with my primary doctor on Monday [tomorrow], so I tried to stick it out, hoping it'd go away [like it does maybe half the time]. 

[Photos taken with HTC One for Boost Mobile.] 

No such luck. I woke around 3am with unbearable pain, and after trying to stick it out a little while longer, wound up making a 4am ER visit. That's three times within a month- a new record. 

Like most of the doctors I'd seen thus far, the lady had obviously never treated a patient with fibromyalgia. But she was quick to give me some relief- she gave me Norco and a small prescription to last until I can see my primary doctor [for the first time] tomorrow. 

I slept really well when I got back [LOL], and that helped significantly. However, I did wake a little before noon to intense pain shooting throughout my body [again], and I immediately went out to get my meds. Narcotics are not a recommended treatment for FM, but they are making the pain a little more tolerable. A temporary fix until I can see my doctor. 

As I'm typing this, it's been about 28 hours since the flare-up started. My nerves are shot. 

For me, these big flare-ups often last 2-3 days before I start feeling [mostly] good again, and generally occur every week or so. There is no way for me to know exactly when the next one will happen, but stress [the bad kind] has a big impact on how I feel. 

Hopefully tomorrow I can start on an actual FM medication, instead of simply relying on a muscle relaxer that relieves tension, but doesn't do shit for the pain. 

I'm desperate for some sort of relief. 

Outfit: El Cinco De Mayo + New Medication [Skelaxin]

Probably the most random and ridiculous outfit I've worn in a while. I believe in clashing patterns- there is nothing wrong with stripes and leopard print. LOL Wear what makes you happy. 

What I'm wearing: 

top - American Dream | shorts - No Boundaries | leggings - Claire's 

sneakers - Etnies | sunglasses - Steve Madden | necklace - Claire's | beanie - unknown 

I finally got ahold of my temporary doctor today (it was rough having to wait all weekend) and he switched me over to Skelaxin (Metaxalone 800mg), which is a muscle relaxer. At least this stuff actually relaxes my muscles, rather than cause intense spasms (Robaxin sucked!). It doesn't take the pain away, but it definitely helps the tension. It's some relief, and better than none. 

I have a physical therapy appointment in 2 days, and really don't know what to expect, but hopefully this lady can help me. 

Nails: Sinful Colors 30 Courtney Orange + FM Update [This Is So BS]

What I'm wearing: 

Sinful Colors 30 Courtney Orange 

LA Colors Pro-Gel Topcoat 

Wow, what a week it's been! On Wednesday, I got an official diagnosis for what I knew I had all along- Fibromyalgia. I was prescribed Robaxin (methocarbomol 500mg), which, I think it's making my condition worse. Yesterday was terrible. The pain spread to places I'd never felt it in before, and my muscles wouldn't stop spasming. So I went to the ER that afternoon and was prescribed more pain pills until I can call the doctor Monday morning. I was also told to keep taking the Robaxin until then, which I am not at all happy about. 

But I'm doing as I was told, to make sure it is definitely the medication, and not just a bad flare-up. Today is generally the same so far, but at least I have something to help with the pain. 

It's not easy, and I do all I can to stay positive, like painting my nails fun colors and watching Flula. I also walk/hike a lot, which is confusing to those who don't understand my condition- the more I stretch and use my muscles, the less they hurt. This is great in the way that it encourages me to exercise, but I can't ever relax or get comfortable. Within minutes after I sit down, the muscles in my back start to tense, and it builds up to excruciating pain, and spreads to other parts of my body. Before I was put on meds that help me sleep, I was only sleeping once every 3 days or so, when I was finally too exhausted to do anything else. I did this for 6-7 years. 

I'm so happy to finally have medical coverage so I can get the help I need. I've been spending a lot of time at the hospital lately, but I'll do what I must to find a way to manage this better. There is no known cause, no cure, and it will never go away, but I can try different medications and hopefully soon find some sort of relief. 

Gratitude #3 + I Finally Got An Official Diagnosis

Yesterday I finally got an official diagnosis for fibromyalgia, and was put on Robaxin, and the next step is to call and schedule physical therapy. Today is my first day on this medication, and I'm desperately hoping it works. (I feel okay so far..) 

<3 

I'm so happy to have medical coverage now! :) 

Vitamin C serums | strong coffee | my phone bill is only $35 [Boost Mobile] 

Betsey Johnson sunglasses | Chuck-Chucks [Get 50% Off!] 

cherry blossoms | long walks | beautiful weather 

my huge nail polish collection (so many fun colors to choose from!) 

jewelry | excellent health (other than my FM) 

receiving so many wonderful beauty products in the mail 

my loving and artistic BF | ESP guitars 

Surround yourself with the people and things that inspire you, and let go of those that hold you back. <3 

Diary: I Have Fibromyalgia

Ah, the things most people don't know about me...

I have fibromyalgia.

Not officially diagnosed, but hear me out- this is something that has been going on for 5+ years now. I was 21-23 when I started showing symptoms, and it progressed steadily from there. (I am now 28.)

In the beginning, I saw many doctors, and all of them were quick to prescribe me muscle relaxers, tell me I needed a massage, and sent me on my way. I had extreme knots in the muscles around my right shoulder blade, often accompanied with a searing pain that felt like a knife being thrust into my back, and twisted. I had so many tests done, to find nothing.

I quickly grew tired of hearing, "You're fine, you just need a massage." The muscle relaxers and pain medications helped for a while, but they never really helped much at all. The pain was dulled for a short time, but never went away. And I'd long since lost count of how many doctors I'd seen.

The thing with fibromyalgia is, there is no cure. You can only treat the symptoms. (Check out this story about a man's otherwise healthy wife being debilitated for 9 years. This is an extreme case, but all too familiar.)

I gave up on the idiot doctors when my medicaid ran out. I also stopped touring in order to heal, and start over. But I never really got better. I actually started to lose faith in myself. Again.

Fast forward to today...

The initial symptoms still remain, and I've gained a few others over time-

1) Constant tightness and dull pain in the muscles around right shoulder blade area. Searing pain when it flares up.
2) Lately it's been starting to occur on the left side as well.
3) Can't sleep many nights due to pain. When I finally start to relax, I often experience restless limbs (usually arms). This keeps me up until early morning.
4) Every few days or so, the pain is so excruciating I vomit. Multiple times.
5) During flare-ups, even the slightest pressure on certain trigger points makes my knees buckle, and will drop me to the floor.
6) Constant pain, lack of sleep, and feelings of helplessness lead to depressive states.

Those are the most common.

I don't tell many people about my problems for several reasons, the main one being I don't want pity, and most people won't understand anyway.

Honestly, it pains me to admit I have this. I am a very strong-willed person, and I hate the idea of being a slave to my body, my own humanity.. I hate feelings of weakness.

The upside to not being medicated (I hear about so many FM sufferers having to take dangerous drug cocktails and living as zombies) is I can still go outside and get some exercise, weather pending of course. Taking long walks really seems to help. I try to be as active as I can. It makes me feel so much better. (FYI, this is why I get so angry about lazy people- I'm in agony half the time, and I still work out! So STFU already, bitches.)

Meditation helps to an extent. I can easily gain control and relax those hard-to-reach muscles, but only for a short while. And when it's so bad I start puking, all of that goes out the window. Those are often the days I hadn't been able to sleep the night before, and my nerves are shot.

I switched to a vegetarian diet almost 4 years ago now, and I feel better overall, but it didn't help my problem.

This is something I live with every single day, some days worse than others.

For example...

Last night, I fell asleep relatively early- about 11pm, and slept until about 1am. I got up and went to the bathroom (I'd been drinking Lime-A-Ritas to help dull the pain), and went back to bed. (I have to keep my head propped on an extra blanket on top of my pillow to both stretch and support my shoulder.) Although I was exhausted, and had taken Tylenol PM to knock myself out, I had what I call the 'full body twitchies' - Restless Limb Syndrome. I spent this time, exhausted and miserable, writing lyrics in the dark to keep my hands busy, and my arms from flailing violently against my will. And eventually, I finally passed out some time after 7am, and slept until noon-ish. Today I feel absolutely terrible, and completely drained, and refuse to do anything more physically demanding than taking a hot shower. Fuck the world.

This is my life, and now I can hardly remember what it was like to not feel this pain. I hate it so much, but although it is debilitating, it also teaches me about patience and inner strength every single day. It keeps me grounded, and reminds me that I am, indeed, only human.

I hope one day soon a cure is found that won't turn me into a drug addict or make me grow man hair.

Do you have fibromyalgia, or know of someone who does?