Anniversary Diagnosis

I’m coming up on my four year anniversary. Not my wedding, although that is on the horizon too, but of being diagnosed with Lupus and Fibromyalgia. In some ways it feels like it was a very long time ago and in others it’s as if I was just sitting in my first rheumatologists office. It’s such a weird dichotomy to feel so knowledgeable and yet feel so helpless in dealing with my own health. After this long of dealing with all the symptoms, you would think I or at least my doctors, have a handle on it. The reality is my cocktail of medication still changes. As I write this I’m starting 2 new drugs. One I have been on in the past that my last doctor told me to stop taking but the new doctor says try it and if it makes you feel better then stay on it.

It’s almost comical how each doctor has a different view of treatments. My first rheumatologist handed me prescriptions like candy. All except the really good stuff, other warriors will know what kind of stuff I’m referring too. In all honesty I needed all those drugs. I was in my first flare and it needed to be stabilized. Skip two years later and my next rheumy had a more holistic approach and when I say holistic all I mean was she didn’t want me on any meds at all. Our appointments ran more like therapy sessions. But I hated pumping my body full of chemicals, so I spent another year slowly going off all but two medications. I was still “stable” in med speak but I always felt like crap, all my symptoms were heightened and constant. There were few things I could do without resorting to strong medication to make me feel better but they were all temporary and typically cost more than I was willing to spend.

Now fast forward to my 4 year anniversary. I’ve just moved to a new state, the very very health state of Colorado and new doctors. They want to change things up. If certain meds make me feel better and let me live a more normal life then why not take them? That comment was like a slap in the face. The last 2 years I have been completely passive, letting my doctors tell  me what treatments to take and my only question was “what are the side effects?” They know best right? In reality I’ve been a husk of myself. I lowered my meds as far as I could go without going insane with pain and sleep deprivation and all the accompanying side affects and thought I was doing the right thing. The less chemicals the better. Right? Result: My life sucked. I had energy for nothing, I was a zombie. Brain fog and pain ruled my days. I hated leaving the house, just the process of showering and putting on my eyes tuckered me out. My couch was my best friend. Books were my pain killers.

I don’t want to be that person anymore. Passive can sucks eggs, proactive is my new sidekick. It’s not easy. I have a lot of goals of what changes I want in my life and I wont lie, it’s going to take a while and a lot of effort. But living in such a healthly and active state, where trails surround the city like snail tracks on a rainy sidewalk, helps with the motivation. I’m so tired of feeling like crap that I’m willing to add more chemicals to get pieces of my life back. I want to go out to dinner with friends, hang out and play games, spend the afternoon at the mall, take my dog hiking, feel like a person again. If that means adding a few things to my twice daily cocktail, fine. Eventually when I’m feeling healthier I can start the process of taking them back out and see if I can manage without them again. The key word is ‘manage’. The rest of my life will be about managing. Managing my meds, my symptoms, my life, my activities….My health will never be healthy, it will be a constant vigilance and acknowledgement of symptoms and managing them. Unless a cure is found in my lifetime, I will always be managing these diseases. A juggling act that will never cease.

After four years, I’m finally beginning to understand and accept the challenge of having 2 auto-immune diseases and another of chronic pain. I will never be rid of them but I can yell at them when I have to and smack them back in there places when there being rowdy. Constant doctors appointments and changing cocktails are routine and one day I hope to scrape both down to there absolute minimum. It will take a lot of work and a lot of alternative therapies and I’m willing to try to use them to my complete advantage. As you can see after hundreds of doctors appointments, books, articles, research, blogs, support groups and ranting I’m full of knowledge but it doesn’t change the fact that these diseases cause our bodies to constantly change, creating new symptoms and new triggers to often. In the end, I know what I want now and I’m willing to work to achieve it. If my doctors are not of board then I’ll get new ones!

Cheers!

For other warriors curious about my treatment plan, scroll down.

Meds: Lyrica, Plaquenil, Ambien, Cymbalta, Hydrocordone, Nexium, Depro-provera, Vitamins (fish oil, Vit D, C) and ibuprofen.

Doctors: Rheumatologist, Hematologist, Opthamologist, Primary Care, Dentist, Plumonary Specialist, Chiropractor and Gynecologist.

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What’s in your food?

My husband and I were sitting on the couch a few evenings ago, him on his laptop, me doing a second read of the Jane True series by Nicole Peeler, both enjoying our own bits of entertainment for the evening. Mike turns his laptop screen to me and asks “what do you think this is?” Well I see this bright pink goo that instantly reminds me of salt water taffy. When we had cable we always watched the food network and the shows about how they made certain foods. It reminded me of one at some candy factory where you’d see the guy stringing the taffy on a machine to mix it up. It looked like a giant string of bright goo, just like this picture. So instantly my response was “salt water taffy”. Then my mind went to mmmmmm lets get some taffy. Because really, it was desert time. I reminded myself I’ve never actually been a fan of taffy so there probably wasnt any in our candy drawer but there was plenty of chocolate. Then my husband went and burst my desert musings  all to hell.

“Its McDonald’s processed chicken.” Silence. Gag reflex working a bit. I stare harder at the picture trying to connect chicken nuggets with the Willy Wonka goo I see on the screen. Gag reflex working a bit harder. Still silence. Finally all I can manage to say is “Ewwwwwwwwwwwww I used to eat that crap. and I loved it as a kid.” I suddenly felt really guilty at that admission and really really dirty.

Dont believe me? Wanna see the picture he showed me? Read this article…alllll of it.

http://docakilah.wordpress.com/2011/05/11/can-you-guess-what-mcdonald%E2%80%99s-food-item-this-is/

Still wanna eat fast food? Luckily for us that is something we cut out years ago. This article only makes me happier that after Super Size Me we decided fast food was no longer worth the health risks. Hey we were still college students. The one dollar burgers were a standard meal. I remember when we could both eat for 7 bucks. After Super Size Me and obvious weight gain past the freshmen 10 we decided to try to cook more at home. Then after I got diagnosed with Lupus and Fibromyalgia we then started banning as much processed food as possible. The result? We became foodies, food snobs, picky tasters, whateva you want to call it. We like food and were picky about it. We dont frequent many chains, we try to stick with local restaurants and the more organic the better. The less handling the food has the happier we are. Our taste buds have evolved and we’ve become addicted to the good stuff. The natural stuff. The real stuff. Not that processed goo in the picture.

Now I know some feel they dont have a choice because of their budgets but really, there are choices. I’d rather take my 4 bucks for a value meal and go to the grocery store and buy a bag of carrots and hummus. I say that like it is easy. We all know its not. We have to change the way we think about food, change what our body craves. It took my husband and I years to come this far, but we wanted it. Now if we regress and eat something we normally wouldnt we both regret it as soon as we put it in our mouths. Remember evolved taste buds?

But what makes me angry is that companies even make this crap and feed it to us and we never question what is in our heavily processed cheap fast goo. Dont you ever want to know what you put in your body? Most people wont get piercings or tattoos because their afraid fo what it will do to them yet they inhale food that only pretends to be food. What do you think is worse a hole through your nose or inhaling years of ammonia laden ‘chicken’?

Crimson Moon

It’s true, when I want a break from the intense fight scenes, gore or crazyiness of Scifi and fantasy novels and want something mindless I usually turn to a paranormal romance book. I know I know. Romance books tend to be cheesy enough let alone ones with paranormal characters too. But I’ve read a few regular romance novels and felt icky when I was done. The pirates booty and extremely over the top sexual prowess was just too…dirty porno? I’m sure romance readers out there disagree. I probably read the raunchy ones without knowing it. So I turned to paranormal romance hoping I’d find something a bit different. I did this mostly because a lot of authors in the urban fantasy world I enjoy have written a paranormal romance or two on the side. Since I liked the author I picked up the book. Even though the monsters are made up, the romance stories always seemed more believable. Maybe because of all the supernatural elements your mind accepts the unlikely rather than just saying ‘now that just doesn’t happen’ in a regular human scenario.  Whatever the reason I’ve found my occasional foray into paranormal romance a much better experience than regular romance novels.

Case in point. Since the New Year has turned over everyone is coming out with their own lists for the “Best of 2011”. Since I follow a lot of authors I’ve seen a lot of ‘best of books for 2011’ with their names on it. *clap of of applause to those I adore* Now I think I read a lot. Too much most days so I’ve pretty much read all the books that appear on these lists, but I still read over them anyways because there is always something I haven’t read or some new author that hasn’t popped up on my radar. With the new popularity of e-readers it makes it harder to find those authors that don’t actually have a printed book yet but are popular and still on the DL.

The other day I stumbled across one that had the author J.A Saare and her Rhiannon’s Law Series which I hadn’t heard about. Needless to say I was hooked in and instantly liked all the characters and the world she brought to life. After I finished book two I grew bummed the third wasn’t out yet and moved on to try one of her paranormal romances. I was skeptical even though I enjoyed the way she wrote her other books and how easy it was to believe her characters. But for 4.99 on my kindle I said why not?

So I picked up Crimson Moon and didn’t want to put it down. I saw parallels in the vulnerabilities between the main characters of Crimson Moon and Rhiannon’s Law but it quickly faded as the story progressed.  The book moved fast easily morphing from scene to scene which impressed me because there wasn’t a lot of ‘action’. Physical action and constant bombardments usually keep a story ragging forward. However the first half of this book was really just a group of kids getting to know each other or more importantly the two main characters growing on one another. The development of their relationship, although quick, felt real and not over the top ridiculous like other romances novels portray.

I was actually involved, rooting for their relationships success. I was hooked in and believed the relationships quick progression. I wasn’t sniggering at the instant undying love being professed because there wasn’t much; the characters were hesitant and shy in their new relationship even though it was obviously passionate. I didn’t roll my eyes at the characters inability to ever stop touching each other or over the top sex scenes were the lovers often found themselves in extremely creative positions. Mostly because there wasn’t any of that either. There was plenty of sexual tension and the sex scene that eventually came was in the right place and fit the story well.  Even though I was easily able to guess what kind of challenges the couple was going face based on the hints dropped I still wanted to read and find out how the characters overcame the obstacles in their way. I was pleasantly surprised by it all.

In the end I didn’t feel like I read a romance novel even with the happy ending that is often missing from an urban fantasy novel.  Since I haven’t been following J.A Saare until a couple days ago I can only hope there is a continuation to the series. There are plenty of openings for one and I hope she’s taking advantage of it.

 

Here’s a link to her site

http://www.jasaare.com/JAS.html

Cheers