SMASH time again

Hello folks. It's been another one of those weeks and with the culmination of this frustration tomorrow morning. I saw my rheumatologist on Monday. Normally I really like her but I listed off my concerns to her and all I get is: well your labs have always been fine. That's it. LOOK AT ME. Look at my skin, look at the circles under my eyes. LISTEN TO ME. I'm telling you things aren't right. I don't care what the fucking labs say.

Then I get the push-off to other doctors. This happens at almost every appointment. "Well this doesn't sound like RA. Sounds like fibromyalgia and as you know, we don't treat that. I can send you to someone or you can see one of your other doctors." So I say, "well maybe I can talk to my neurologist whom I love but is located way the hell over in Missouri." Then we talk about my extreme fatigue, the lack of appetite, severe bruising all over my body, etc. and she says it could be adrenal fatigue from coming down on the steroids that SHE prescribes. All righty, that makes sense to me. So what's next? "You should go see your endocrinologist or your GP about that, although most GP's aren't good at running those tests." ---SIGH--- I came home feeling a bit rageful and immediately refueled the rage by upping my dose immediately of prednisone. Then that night I was so crabby, I worked out for 45 mins to stop feeling so angry. By the next day I could hardly move, my whole body ached and my knees felt like sharp nails were driven through them. Oh well. It's ok I can take it easy, oh no wait! I have to dig out part of the driveway so my husband could get home from his business trip. So much pain. Sooooooooo much pain. And today? Today I had my TMJ shot. I can hardly open my mouth so things like flossing and eating solid foods isn't happening. I was excited for this one! But he put quite a bit of medicine in there and it's really sore. Plus my baby, once again, managed to clock me in the jaw. Damn kid could do some kind of baby MMA fighting, I swear.

So I begged my endocrinologist to get me in STAT to talk about this and hopefully run some tests. Maybe he can get me off this friggin' awful drug, although when I'm on it, I have less pain. Double edged sword. I am prepared to be told nothing's wrong, I'm not showing enough signs, etc. I am prepared to BEG for help. Please someone, for fuck's sake, help me. I'm so torn about this. On one side, I think maybe the doctor's are right in their flippant attitudes. This is as good as it gets for me. The pain and fatigue will forever be this bad. Or, is it the other side of me. The side that keeps fighting and fighting. NO! This is not acceptable! We can do better but I can't do this shit on my own, buying supplements from every quack on the internet! Some of this stuff causes interactions with my medications. I want to be safe and responsible but most of all, I want to make improvements. So wish me luck tomorrow. I go early in the AM.

I hate doctors.

Here is a quick pic of what I take every day.

These are the bruises I'm referring to above. The legs have the worst of it. But I get them on my arms, my rear end and sometimes chest. But the legs take the brunt of whatever is happening. I don't remember getting these at all. Sometimes when I lean against a counter, or push a heavy drawer closed with my legs, I can feel the pain. But most times I don't remember it.

How is this, layered on top of all my other complains, normal? I don't know what I'll do if I get blown off again. Hopefully I'll keep my language clean though. Well, time to get to bed. Guten nacht. Wish me luck.

Rolling with the tides

I've started and deleted so many blog posts now that I've lost count. Where am I in my life? What should this blog focus on, represent? My life is so up and down, this and that, OCD layered in piles of chaos. It doesn't matter so much to me what people want to read. It matters what I want to say. But I don't know where I am or where I'm going now, other than raising a fabulous, impish little girl. I'm a mom and wife, first and foremost, but what else can I be?

I honestly believe the cliche "Life is a journey, not a destination." Your identity is fluid, not static. Your interests and circumstances change, your abilities change, the people in your life change, etc. I'm still VERY interested in embroidery and cross stitch. But with EK mobile, I can't find a lot of time to do it. She has learned to walk, crawl up onto my lap and computer and stitching, crawl onto the back of the couch, you name it. So that's fallen to the wayside, which sucks. It's such a good way to meditate. But I know someday I will get back to it. My other pursuits include researching ways to upgrade the house. I'm trying to use some stencils to update some big, blank walls. Currently I am practicing with the stencils in the garage because I haven't nailed how much paint to use and pressure on the rollers. I'm getting some paint bleed so I need a little more practice before I bring it into the house. I'm also constantly (and I mean CONSTANTLY) researching ways to be as healthy as possible. I even looked up oil pulling the other night. (Google it. What a weird concept.) I drink a cup or two of unprocessed organic cocoa powder every day with almond milk and skim milk and a little Stevia. Unprocessed cocoa powder helps with regularity. I have a smoothie consisting of a raw egg, kale, frozen berries, carrots, unrefined, organic coconut oil, and a banana every morning. Then I take two teaspoons of lemon-flavored fish oil and pour it into a shot glass. I then add some liquid Vitamin D and shoot it like a shot. I take digestive enzymes and probiotics too. My natural health doc gives me breathing treatments with glutathione which is supposed to help heal the immune system. It's insane to me, and terribly expensive, that I am doing all this along with the removal of gluten in my diet. When I even think about going out to eat, I can't easily find somewhere to eat.

I also quit washing my hair everyday to help preserve my hair color. And I'm trying to rid the house of products with parabens. (What a joke. Pretty much all my hair and face products contain them. Organic, hippie, safe cosmetics will cost you an arm, leg and then some.) I cringe when I think of all the things in baby products. I try to use the best and most affordable things on her as I can but it's hard. Keeping yourself and your family safe from chemicals in your home should NOT be cost prohibitive. The FDA is a JOKE. What you hear is true: "Don't rely on the government to take care of you."

So this is what I do now. And I guess my blog will be ever evolving. I do hope to continue stitching designs and other arty endeavors. And I'll try to report the health stuff as I understand it. I'll report on the things I've tried, even if they are stupid in hindsight! And I'm sure I'll go on some rant eventually. I can only go so long without one. So that's where this blog is at for right now. Stay tuned!

Tschus.