Hissy Fits and Meltdowns...

So last week I had a melt-down that would make a toddler's jaw drop. You would think I had dropped my lollipop in a sandbox or something. In reality, a nurse had called to tell me the seven vials of blood they had tested all came back normal. Only a chronically ill person could have a breakdown over good news.

I'm not even sure what tests they ran. Must be a sign that I'm officially tired of doctoring. I'm usually quite proactive. I do know they did the SED Rate test. It tests for inflammation and can indicate an autoimmune issue. The tears came because everyone (doctors included) knows I'm sick. It must be a part of human nature, but I have this insane need to have a name for what is happening to my poor body. I'm "sick" of being a medical mystery. That pun was totally intended! For once when someone asks what I have, I'd like to give a definite answer. I know I have POTS, but I also know there is something else going on. Something probably autoimmune related.

For now the search continues. My primary care doctor has prescribed a steroid that she would like me to try so I need to call my Doctor at Mayo and get his opinion on that. My primary doctor also referred me to a Rheumatologist but of course they can't see me until December so I wait!

OK, enough of that negativity! Let's talk about my improvements. I have been incredibly active lately. Just this weekend, I took my girls to a baby shower, parade, and barbecue. When I got home last night I had Gorilla arms (they were so weak and heavy it felt like my knuckles were dragging on the ground) and I had no energy but I'm living my life! Three cheers for that! 

I also feel like the Paleo Diet has helped. It's going to be a slow process and I didn't think it was making a huge difference in how I was feeling. Then, I had a moment of baked goods weakness and ate a bun. A delicious, moist, piece of heaven that quickly turned to hell! A half hour later, I had a headache, my heart was racing, and I was nauseous. Lesson learned... again. I'm a really slow learner! One of these days I might catch on. 

Another plus to the Paleo Diet is that I'm starting to love to cook! There is nothing more heart-warming than having my toddler say, "Mom, you're a good cooker!" My heart melted faster than Coconut Oil (my new favorite cooking ingredient) in a sizzling hot pan! It makes me happy to know that when my little girl moves out in sixteen years, she will actually miss her mom's cooking! That might be the only thing she misses of me, but at least it's something! Haha!

That's probably enough of my rambling for one day. I'll keep you updated on the steroids. Too bad they aren't the kind that will make me look like a supermodel. That would be a nice side effect! 

"A man's heart deviseth his way: but the Lord directeth his steps." - Proverbs 16:9 

Amy

It's About Time (My Recurring Theme)...

I know, it's been a while again. I just hate posting when I don't have good news. This "cocktail" has been a disappointment to me. In ways, I feel worse than I did before. Let me tell you, there is nothing more frustrating than fighting with your own body. It probably doesn't help that I'm hopelessly stuck in my old ways. You know how the saying goes, "Old dog, new tricks, blah, blah, blah." Well, just call me Fido because I'm a slow learner.

After my stint of not eating last winter, I swore that if I could get my stomach working again I would only eat healthy foods. Yeah, that lasted a good month before the devilish temptations of fried foods and baked treats started calling my name. It's not my fault, I'm American. It's how we're programmed. Eat what's easy and delicious now and worry about the consequences later. News flash: That's a terrible way to live! Trust me, the consequences really suck! 

Now, I'm not an extremist. I, in no way think all of my health problems have been caused by my terrible eating habits. However, I haven't helped my cause by filling my body with processed, preserved, pre-made foods for the past twenty-seven years. I'd like to put partial blame on society but most of it falls back on me. Let's start with society, because I already feel rotten enough! I realize we live in a fast-paced world, but our health should remain a priority. When did this happen anyways? When did we get so caught up in life that we started gobbling down grease soaked burgers that taste like cardboard just to save a couple minutes during our lunch break? When did we have to start choosing between twenty versions of the same grocery item, all claiming to be "natural" when the ingredient list proves otherwise? I'd like to get back to the basics. I'm sure my Great-Grandparents are doing some fist pumps and happy dances up in Heaven, saying "It's about damn time!" 

So now I have to point the finger back at myself. I have a chronic illness that controls more of my life than I like to admit and yet I haven't been able to buckle down and eat healthy. I was an insanely picky eater when I was young. I'm sure my poor, beef-raising parents never expected to have a child who wrinkled her nose at almost every form of meat. But now I'm 27 and I suppose it's time to grow up. Enter, the Paleo Diet (or at least my altered version of it). The concept is simple: Eat like a caveman. Fruits, veggies, meats, and all those other God-given foods that are filled with nutrients! What a concept! Eating to live instead of the other way around! 

This is going to be a battle for me. For POTS patients, standing and being in heat are two HUGE symptom inducing factors. So naturally, cooking is not something I've been a big fan of. But, I'm learning. Instead of cooking the meal all at once, I break it up throughout the day. For instance, sitting at the table and chopping veggies while my girls are napping so when it's time to cook supper I just toss them in. I also have to admit that I'm not going to be a good role model for Paleo Wannabe's. I live on a farm where our main crop is wheat. I'm pretty sure if I told my husband we could no longer have wheat products in our house, he would have a heart attack and I love him so I don't want that. I, however, am avoiding gluten because I've always known it's a problem food for me (though I don't have Celiac Disease) and I've just never had the self-discipline to do anything about it. I'm thinking I've finally hit my rock bottom! I know, it's about damn time!

Ok, this post got a little lengthy, but I'm making some big changes and finally, FINALLY taking control of the few things in my life that I can. Naturally, I wanted to share my epiphanies! As a side note, I am still taking the cocktail of meds and will be seeing my primary care doctor soon to discuss where to go from here. Dr. G. suggested seeing an Allergist/Immunologist and I think that's a terrific idea. I've been having some issues with my tongue being constantly swollen and it's probably time to finally have some real allergy testing done. I'll keep you posted. Oh and speaking of wheat, I'm attaching a photo I took of the sunset by one of our fields last night. My personal paradise!

"The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower." - Psalms 18:2

Amy

Well Hello Again...

It's been awhile! I think I've taken the stance of "If you don't have anything nice to say, don't say anything at all." I've definitely not had the miraculous recovery I was hoping for and my improvements have been small and slow. Logically, I knew this was to be expected but it's disappointing nonetheless.

I'll start with the positives. My energy level has improved. I would guess this has to do with the B12 supplement. I'm still taking an oral supplement and I think within the next month or so we'll be re-checking my levels to see if there's been an improvement. As I mentioned in an earlier post, my nausea has also improved. It's no longer 24/7 which is amazing! My "extreme episodes" which usually happen at night are also becoming more rare. Some nights I feel like I'm right on the verge of one of these episodes, but the Allegra/Zantac combination seems to put an end to it. I can feel it the moment those meds kick in and my body instantly relaxes, allowing me to pass out and sleep through the night! Hooray for that!

Logically, I know I've come leaps and bounds since last December. I've had a very active summer so far. Most active days cause me to feel a little like road kill the next day, but it's so worth it for the memories made.  In December, I was so ill that being active wasn't an option. I wasn't able to shop for my girl's Christmas gifts and when they opened them, I watched from the couch. It was the worst form of torture ever, right behind waterboarding! 

So, overall I'm doing much better but I'm still dealing with a ton of daily symptoms that are making me miserable! My everyday symptoms are congestion, ear ringing, tachycardia, shortness of breath, red irritated eyes, sore dry throat, painful joints, burning in my mouth and tongue, burning in my stomach, and palpitations. I've also been having days with extreme weakness and tremors in my arms. It's a lot like having the flu for the past seven months.

After discussing these symptoms with Dr. Goodman, he decided to add a small dose of Zyrtec to my cocktail. Hopefully that will take care of some of these symptoms. For now I'll say positive and push on and I promise to post again soon!

"But the Lord is my defence; and my God is the rock of my refuge." -Psalms 94:22

Amy