Sleepless in Deltona

Well I'm back, technically tomorrow and as promised I'll tell you the riveting story of my dietary needs. It started with my ENT or neurologist or some doctor out in Alabama telling me that I needed to watch my sodium intake (but I was just so out of energy all the time so I wasn't going to cook, and I had almost every fast food place right down the road from my apartment so in my mind problem solved). Well, it was problem solved until you try to find something healthy from a fast food place, and theres only so many salads I can get from McDonald's before it just really feels wrong to be paying them for that.
After I had to move back to Florida, but finally got to see a doctor that actually knew what lymes was, let alone bartonella and whatever the other one I have is (seriously I thought I was going to have to go to a vet because they're actually the ones that found bartonella...I actually asked about getting an appointment with my dogs vet back in Al, he was really good), but anyways this doctor here tells me I should be eating low gluten and low dairy. I was so hesitant to this because everyone says gluten free stuff tastes awful, it tastes like cardboard. Well lucky for me that my cousin and her friend started this business not that long ago, Ready Set Cupcake, that happens to be gluten free cupcakes, so what better way to ease my foot into the door than with cupcakes. And I got to try their new product first, whoopie pies, which were so yummy!
Quick sidebar right here, anyone who's gluten free should definitely try their products. It's so cool, it's pre-made and frozen so all you have to do is bake and then frost, but on their website it has all these cool ideas for you to make a plain chocolate/vanilla cake or frosting into something totally different.
Oh, second sidebar, anyone near DeLand needs to check out the DeLand Natural Bakery. Love, love, and love some more everything about this store. The vegan gluten free white bread (which I know sounds like it has like nothing in it) is so good, and I used to eat so unhealthy, and now I'm suprising myself. I actually like most of the gluten free stuff better.
As far as medicines go right now I am looking to start back up on factive on monday, but I've been on a bunch on vitamins, and even though I know it's a long road I can tell they're helping. I was actually able to go out shopping for a little with my mom the other day and then we went to Moe's for lunch (our usual spot because I can get tofu). It was one of the first times in a while I've left the house not for a doctors appointment, so taking it one step at a time. But the vitamins I'm on are: Vitamin D, B, C, Folic acid(I'll have to be on that for the rest of my life for some funky blood clotting disorder that I'm at a higher risk for), calcium, probiotics, a multivitamin, magnesium, and I just started a new vitamin so I'll have to let y'all know when it's not almost one in the morning. The vitamins like the C and magnesium I'm not taking right now (even though I should probably be taking the vitamin C anyway, it won't hurt me), but just how it was "prescribed" I'm supposed to take it with the factive so I'll start them again monday. Yay, horse pills...
Well, I think it's time to take a different kind of pill and try to go to sleep. I've been banned from my Xanax for the time being because it interacts or something with something, a lot of things like that become a little fuzzy and I'm unfortunately still a little forgetful, I guess it's the lyme brain, but I'm just thankful I have my mom here with me to keep everything straight for me while I can't.

Hoping for sleep, wishing you goodnight, and signing offline,
The lyme life

P.S. last thing TRY IT!!! and goodnight

My life with lymes

Well hi to anyone out there actually reading this. I found out I have lyme's disease and 2 of its lovely co-infections (bartonella and babesia or something funky sounding like that). Either way, I found out that I had these things in my body for somewhere around 10 years, and finding that out at 19, doing the math doesn't make you feel that great because what were those doctors doing all those years? Plus, and this one is important for all of you that have lymes and aren't sure about a co-infection, the bartonella gave me what looks like these awful stretch marks (kinda like below) on my inner thighs, sides, and a few other places, and doctors just kept saying oh they're stretch marks...on a 10 year old...yeah people I was a tiny bit chunky then (no thanks to this disease messing with my metabolism) but 10 year olds don't have stretch marks.

Okay, sorry for the mini rant, someone suggested to me that maybe I should try writing or blogging about my experience with this and I may be able to help someone else, but that still frustrates me a little that I had such self esteem issues over this disease. It didn't help either that my first misdiagnoses was for a few years as depression/anxiety because my symptoms of the bartonella are heavy and they cause similar symptoms to depression just like lymes can. Had any of the psychiatrist/ psychologists been versed at all about these diseases then they might have possibly thought to say to test for it after all of the negative reactions to the drugs. There are probably so many other people out there that were misdiagnosed the same way (not to mention countless other ways) because of how little people know about this disease. 

I got really lucky because my parents happened to know about this disease, my mom actually had it as did most of my dads family so they asked me to ask my doctor to run the test. However I had to have the test done from a specific lab, igenex, in order to have the proper results. When I had the first test run I was living out in Alabama going to college. I ended up having countless blood tests drawn, a spinal tap, ct scan, mri, etc, etc, etc. until they told me that they don't have lyme in Alabama, and according to the cdc and blah, blah, blah. It took my mom searching and calling and trying and trying to find whats called a Lyme literate doctor. I ended up moving back to Florida in with my parents because I can't drive anymore and I couldn't walk down the hall at one point.

The whole purpose of me writing this isn't just for me to rant, it's also for me to try and hopefully potentially help even just one other person. I have been thrown on and off all kinds of medicine because my body couldn't handle them and I've been on tons of vitamins plus eating a super healthy diet. I know that reading what other people who are dealing with lymes have to say, be it either tips or inspirational stories helps because they all said the same thing, it gets better. And while I don't feel that way all the time, I hope that writing this will help me as well. My goal is to try to write at least once a week with updates about my medicine/vitamins, any good new recipes I've found or tried recently and quite possibly a project that I made from pinterest because now I at least have somewhere to share them and my crafts are one of the little things I look forward to. I will try to write tomorrow to let you know what medicines I'm on and a bit about my diet but just really quick before I go, it's (deep breath) low gluten, low dairy, low sodium and I just found out that apparently all the meats I should be getting should be organic but thats a story for a different day. 

That's it for now,

The Lyme Life