Thursday, January 26, 2012

@girlwithMCTD goes gluten free...

Yup! So I've finally decided to give it a try. I actually have quite a few of the physical symptoms of celiac and a few years ago, I was tested for celiac with a blood test. It came back negative. Thinking nothing of it, I continued on with my life as normal. I've had many people tell me that I should try the gluten free diet and see if it would help, but I always think back on that test, and all the hassle that goes into the whole thing and decide I'm ok.

Last week, I was talking to a good friend before she finished packing up and moved to Houston. We got to talking about all the things we'd missed catching up on while she was in France. I told her about my flare up in April, she told me she'd gone gluten free. Her uncle has a diagnosed and rather serious case of celiac, and she has a thyroid condition, so she decided to give it a try. It is hereditary. And those of us with auto-immune issues know that its no secret that if you have one, you're likely to have a few auto-immune problems/conditions. Sadly, its just the nature of the game we call life.

Julie was telling me about how much better she felt since she went gf. Increase of energy, better moods, etc, then we got to talking about me. Haha. She was really convincing. She told me about a documentary she saw that explained how the wheat we're all eating today, has a much higher level of gluten than it did way back in the day. Because of genetic engineering seeds, and the plants that come from them, have had the gluten beefed up so that crops grow more uniformly and are easier to harvest. Which makes it fantastic for us. This is a major reason stated in the documentary for the increase of celiac diagnosis made in recent time. I haven't seen the film, so I'm going to assume that they also mentioned the betterment of medical science and understanding of autoimmune conditions, and the many who've stood up to inform others of this issue for the increase as well.

Sadly, Celiac is still one of the lesser understood autoimmune conditions out there, and there is still a lot that is unknown. Its also one of the hardest to definitively diagnose. Because of the many symptoms that are spread across the spectrum are also widely associated with many other AI issues, its not the first condition considered. Often, it is misdiagnosed. A condition that many state is with you from birth, it remains dormant until it one day hits you and becomes a major issue. I have a close friend who was diagnosed with celiac a few years ago, so I am fortunate to have a better than average understanding of the disease and what I need to avoid. Still, I'm doing as I always do when I make a decision and take the plunge. I'm researching the heck out of it.

I didn't decide to start the diet right away. I applied for a job in Ohio a couple of weeks ago, and I've been waiting to hear back if I'm considered a strong candidate or if I may get the job. I don't know much about my status other than the fact that before I applied they weren't completely happy with the pool of candidates and were calling HR to see if they'd had any more applications. I got an email last Thursday letting me know that I passed the first level of review, human resources, and that my application packet had been forwarded to the director of the department. I'm very excited about the job and all the aspects of it I'd be involved in. Its in the creative services department of Cedarville University, the school I attended after HS graduation and LOVED.  I've been periodically checking their website for job postings and this one got me very excited. I've been thinking about going back to school and getting my BA in Graphic Design, but I wanted to be employed somewhere that may help me pay for it before I started the whole process. CU is a place I know and love and is my first choice for going back to school. The department is also where all of the graphic designers work. That is what cinched it for me. I was in, wholeheartedly. Before that, the idea of striking out on my own, after a year of unemployment, and then working at a coffee shop for below min wage +tips, gave me pause. Right now, I'm blessed with the ability to live with my mom and save on expenses during my limited budget. I still haven't been making enough to build up my savings, which I'd unfortunately had to deplete while unemployed...and sick...without insurance... and I was unsure if starting out like that was something I'd be comfortable doing. Finding out it was my dream job, made all the probably penny scrapping and the possible second job I may need in the beginning, worth it. By far. I'm super excited about the opportunity, but as I said, right now, all I know is that they would like the person they pick to start in the beginning of February. Which, as we all know, is SOON. I've been playing it hopeful, and looking around for places to live and possible roommate connections. I don't know how it will end up, but I'm just putting it all in God's hands and know that if this is where I'm supposed to be, it will all fall into place. All that to say, I was originally planning to wait until I knew about the job and see where I'd be financially (with a move, and rent, etc) before making the switch.

GF, especially right at first. You pretty much have to start all over again with most everything. If it doesn't have gluten in it, it most probably got cross contaminated at some point. I'm trusting pretty much nothing I already have open in my kitchen. Only those items in shakers that I know haven't been opened to scoop stuff out of is being used right now, everything else is being replaced.
And labeled. And placed in their own containers. I'm taking no chances that other items get into packaging or someone else accidentally contaminates something. I started the diet on Monday. After all of my internet scouring, the questions and discussions with friends dealing with going GF, and one friend who has a son with celiac, and all the book reading I've been doing, I decided that I couldn't wait any more. The more I know, and the more I read, the more I've come to realize that I may just have celiac, and this diet may work, or at the very least, going GF could help the underlying symptoms of my other AI diseases. So far, I haven't noticed much. Unless you count the fact that I've spent a bundle on plastic ware and new food items....haha. Actually, I haven't spent a ton on food yet. We do have quiet a bit of canned goods that are edible for me, and I went grocery shopping with my mom the other day, and she spent a ton of money helping me increase my options. She's gotten behind this with me 100% and has been a big support.

Right now, I'd say, I'm still very much on the learning side of it all. I'm still on the cautious side, and asking a million questions. Fortunately, I'm surrounded by a few caring friends with great experience and who have no problems answering my many questions. I'm blessed with the support of those who understand nearby...another reason I decided not to wait. So here begins my GF journey. I'll be sure to keep you posted!

When you can't remember...memory issues and "lupus brainfog"

I've found I often have trouble remembering things. It can be as simple as trying to find the word to make my point (or finish a sentence) to when I'm going through my nightly routine and cant remember if I took my prescriptions yet or not. Lately, I've been misplacing my phone just about every hour...sigh...

It's supremely frustrating. Ironically, I was sitting down to write out a list of topic ideas I'd had. There had been three. This was number two. I still don't know what number three had been. Yeah...Before I had finished writing this down, idea #3 had completely vanished. Try as I could, it was gone.

Is there anything we can do? Something to take, along with the handful of other Rx's and supplements that will clear our head and help us remember? Not that I've seen, and not that I'd be willing to add something else to the mix of things. Its just one more pill to remember to take...or did I?...lol...

So what can you do to deal with these little issues? The whole thing, in my experience anyway, is mostly just annoying and kinda inconvenient. I haven't stumbled upon any instance, that I can remember (ha!) that has made this a serious problem. So what do I do to survive the memory lapses? I have two words for you: post its. Yeah, I'm a huge fan. And I have them everywhere. There's a pad in my craft room, in my purse, computer bag, there's stacks of them at work, and I keep them next to the bed. There's nothing more annoying then going to bed thinking: I have to remember to do _____________ tomorrow, and then waking up the next day and having no clue what you'd wanted to MAKE SURE you did that day. So, yes, I keep them by the bed, the little notes I leave myself as I'm drifting off don't always make sense, but hey, at least I tried.

Another idea I've seen many bloggers advocate is the weekly pill reminder box. A few years ago, I could never understand why someone would have to fill one of those things every week to make sure they took their medications daily. I mean, I could see it if they were traveling, it condenses things and you don't need to take everything with you. I remember thinking, really? Is it that hard to remember if you took your pills that night or not?...And now here I am... I now understand, with unfortunate clarity how this can be a problem. It seems absurd and a bit of an exaggeration if you've never experienced it for yourself. Its hard to explain to someone how it can be, and really do you want to try? I mean, I'm 28, I don't want to come off sounding like some 80 year old who can't remember worth beans, but isn't that how we feel a good deal of the time? Not only is the memory an issue, but we're plagued by other health problems that are normally considered by most to be limited to the elderly. When people joke around that something shouldn't be an issue/problem for me, "cause I'm young" I just kinda smile and say "I may be young, but I have the body of an 80 year old". And apparently, occasionally it spreads to my memory as well...