Ups and downs and level!

The last few weeks have been.....interesting, to say the least! *grin*

The first week that I was taking Thrive, I felt so good that I forgot to take my regular medications. I have an anti-depressant and an iron supplement I take regularly. My anti-depressant has a really long half life, so if I miss a dose, I don't feel it right away....for almost a week, actually.

Well, week two went well, but week three on the Thrive, I really was worried that it has run its course, and wouldn't be useful, anymore. I cried a lot! I slept almost the whole week! I was just about ready to give up, when I remembered that I'd missed almost a weeks worth of my medication right at the beginning, and that I should just wait it out, and see what happens once I level out again.

Big! Hint! To! Self!

REMEMBER TO TAKE YOUR REGULAR MEDS, CRYSTAL!!!

.....*thinks about it*.... I'll be right back ....*takes today's meds about five hours late, but at least takes them*

See?? It's hard for me to remember to take my regular meds because the Thrive helps SO much! And today is NOT my best day on the Thrive, either! Today is a "bad" Thrive day, which means it's just a little better than what used to be my "very good" rare days, before Thrive.

I still can't stand in the kitchen and wash a whole sink full of dishes. I still have trouble with the stairs in our split level. I still take naps a few times a week. I still struggle with the "up-down-up-down-up" orthostatic changes that happen when I'm tidying up a room (so I rarely do it.)

But there's so many things that I couldn't do before that I can, now!

I'm able to putter about the kitchen and make very simple meals for my kids and myself during the day.

I'm able to do three or four individual dishes at a time.

I'm able to sit on the edge of the bath tub and help wash my kids or help them potty train.

I'm able to sit on the floor, surrounded by laundry baskets, and slowly work my way through them. (I leave hauling the baskets around the house to put things away to someone else.)

I'm able to stand long enough to brush my teeth EVERY day, instead of only a on the few good days I'd have each week.

And all of this on what feels like a "Bad Day" compared to the better days I've had this month.

I've been well enough to attend a full two out of three hours of church service, two of the last four weeks; when I've only attended 40-50 minutes every third or fourth month for the last three years!!!

Instead of napping at least once or twice a day, I'm only napping two or three times A WEEK! Which is huge!! (I'm not counting last week's sleep fest! I was having drug withdrawals! Lol)

This week, I'm not back to the awesome that was my first week, but I don't care! These last few days have still been better than the best days of the last few years!

And my latest joyful discovery? I've started playing the piano, again. I haven't been able to sit at the piano for more than two to three minutes, every few months, for more than four years. And I've not only spent 10-15 minutes each day this week playing, myself; I've spent 10 minutes each day teaching my daughter.

There's music in my house, again. And on a "bad day!" I'm so happy!

Crystal

P.S. UNDER NO CONDITION DO I RECOMMEND TRYING THRIVE IF YOU HAVE DYSAUTONOMY WITHOUT CONSULTING A DR FIRST!  There ARE subtypes of POTS and DYSAUTONOMY which CAN NOT have caffeine, so be sure that isn't you before trying it!

Supermom Saturday!

Today is one week, exactly, from my first experience with Thrive. One week ago, today, I took my first supplement pill, and ended up making myself breakfast and eating it while standing up in the kitchen!!!

This.

Was.

HUGE!

I normally have breakfast brought to me, most often still in bed. Even when I'm up in the morning before 9am (which happens about once every two months) I don't get my own breakfast because standing is so hard on my system, and my symptoms are at their worst in the morning. Then, the kids watch cartoons while sitting on me while I nap on the couch till almost noon.This pattern had been in effect for over two years, since the summer of 2013, when I had my first major syncope episode (blacking out.)

For SIX of the last seven days: I've been up by 8am, fed myself AND MY KIDS breakfast, done laundry for the first time in over a year (laundry's in the basement; stairs normally=tachycardia), put laundry away, run errands, puttered around the house and stayed awake and active and up ALL DAY!!!

Last Saturday, which started with my eating in the kitchen, ended up being the busiest day I've had in years. Sunday, despite feeling tired from the previous day, I made it to two hours of church (instead of my habitual attendance of half an hour every third to sixth week!) before needing to go home. Monday I was really tired, and my mom helped around the house and took my kids to and from school for me; but I was still up all day. I know from experience that after a day like last Saturday I usually spend at least two days lying down in bed because I simply can't sit up without getting light headed and dizzy; and this week I was able to not only be up, but to be up by eight each day and not nap the morning away!!!

Holy!

Freaking!

COW!!!

Tuesday, Wednesday and Thursday I paced myself better. And I began to feel like a person again!

Friday, I slept till noon thanks to my mom telling me I could sleep in. But when I got up, instead of dragging all day because I was just exhausted (and I was) I was able to run errands and get some chores done, help my mom with her computer software, etc!

My life, at the moment, is 1000% better than it was, last week. I have no idea if it'll last, but I'm 100% certain I'm going to keep using it, because it's amazing!!!

Snack Time with my Kids-Yum!!

Today, I went on a walk with my kids in the morning. I haven't done that in over a year and a half! After a day of errands, three different stores (one of which I didn't use the motor cart for the first time in over a year!), lots of driving, the park (again, only been to the park with my kids twice in the last six months!) and being supermom; we finished grocery shopping and I started getting dizzy. It's 4pm, and I've done more today than I normally accomplish in TWO weeks, before getting light headed and dizzy. I'm going to take a nap, instead of making it to my bi-annual women's confrence, because I totally forgot to pace myself today. But I'm ok with that!

My Daughter loving her snack and Mom Time

It's a miracle, and I'm so happy! We came home, tired from shopping, and I pulled the kids up to my room ('cause I'm too tired/dizzy to sit at the table) for a treat we picked up from WinCo. They have these new pumpkin flavored Greek yogurts, with toppings. Can I just say how awesome it is to hear my children "yum-yum-yum"ing over a snack so healthy???

My Son: Making the cutest "mmmm" "oh-mmmm"
 sounds as he enjoys his pumpkin greek yogurt

Today? Fabulous!

And I'm actually excited for tomorrow!

That hasn't happened in years!

See ya 'round!

Crystal

Straight up!

I'm experiencing a miracle!

I saw a post from a friend about an energy/weight loss/vitamin supplement called "Thrive". She was offering free samples. I've been trying it for a week and for the first time in almost three years, I have been able to do a load of laundry each day, drive my kids to school, run errands and FUNCTION; if not on a "normal" level; a whole lot better than I have in YEARS!!! I haven't slept through the morning since I started taking it. I'm up in time to take over from my husband before he goes to work and even on my bad days, I'm quietly puttering or getting things done. Instead of being up for two to three hours (where "up" means sitting on the couch, listlessly watching cartoons with my kids) and then having to lie down for a few hours, before doing the same thing again, I'm a PERSON AGAIN! My kids have, for the FIRST TIME IN THEIR LIVES, watched less than two or three carton episodes each day!!!

Just now, between paragraphs, I went up the stairs at a "brisk" pace and only realized on my way back down that I wasn't out of breath or light headed! I even ate my breakfast yesterday, STANDING UP, and only realized I felt fine when someone in the house asked if I was OK standing so long. I blinked at them for a moment, as I thought about how long I'd been standing there, before glancing at my feet (which were turning slightly purple) and and realizing that I felt fine, despite the blatant discoloration in my feet!! I just started stupidly for a moment before smiling hugely and beaming at everyone in the room!

The "Thrive" Patch on my ankle

I have no idea if it will last! The Thrive supplement has caffeine in it, which is hit and miss for folks with dysautonomic disorders, and a complete NO-GO for certain types of POTS patients. However, it's an actual method of treatment for hypotension disorders, which is one of the two dysautonomic conditions I have, POTS being the second. I don't know if it will eventually cause more harm than good; I don't know if I'll build up immunity and not be able to function, even with it; I don't know if it will last me my lifetime and be an honest to goodness long term solution; but I'm hoping! For a week, I've felt like I've reclaimed myself! And even if it isn't a long term solution, for this week, it has been SO WORTH IT!!! Guys, if anyone struggles, even a little bit, with feeling like they have the strength to make it through each day; try this!!! http://cjeffs.le-vel.com

Love you all!
See you round the webs!

Crystal

P.S. UNDER NO CONDITION DO I RECOMMEND TRYING THRIVE IF YOU HAVE DYSAUTONOMY WITHOUT CONSULTING A DR FIRST! I kind of did, but only because my doctor and I have been working together for so long, and had so little success, and he's all for trying new things as long as we introduce them gradually and I use my heart and blood pressure monitors regularly to be sure I'm safe. AND I check in with him every few months to update him on what I'm trying and what my results are. So really, I consulted with him for years, and knew that he'd tell me to try it, since we haven't tried anything new in several months, and since nothing else is working, but to take it slow and to stop if I had ANY problems, and then to follow up with him. Which is exactly what I'm doing and it's fabulous! However, there ARE subtypes of POTS and DYSAUTONOMY which CAN NOT have caffeine, so be sure that isn't you before trying it!

Reformating

I've had to take several days to decide how I want to continue this blog. I'm in a completely different place than I was two years ago, yet there are vast similarities. I still need to set and achieve small goals. I still need to keep a positive outlook. Yet, I also need a place to record my feelings and my struggle as I deal with my illness. I need a place to explain myself and how my illness affects me. I'm in so much pain, so much of the time. While I do my best to stay positive, I also need a place to honestly express that "No! I'm not OK!"

So I've decided to split each post into sections: Family Fun, POTS Education, Truthful Feelings and Looking Forward.

Family Fun will have cheerful updates about the beauty of my life, the joy I take in watching my children grow, and the things we're accomplishing.

POTS Education will share about how my life is impacted by my illness. Sometimes it will be science and facts, and sometimes it will be a journal of personal experience detailing how life and the "fun times" affect me.

Truthful Feelings will be my expression section. This area is where I will allow myself to be honest about my progress and my feelings. I believe strongly in positive thinking, and my "voice" online tends to sugar coat how things are by focusing on the positive. I've had family and friends assume I was getting better, because I try so hard to present my struggle in a positive light, even when feeling daunted. Here, I'll allow myself (perhaps even force myself) to actually tell it how it is. Even if it's bad.

And finally, in Looking Forward I'll focus on the positive, again. Because I must keep looking forward! As much as I need to be able to have a place to express my pain, I cannot have that place be one of only sorrow or loss. This is where tomorrow's goals will be updated and where I'll put the brave face back on. Every step I take hurts, but the hurt is tied up together with hope, and this is where hope will speak.

See you 'round the webs!
Crystal

Straight up, or sideways!

There's a country song, popular in its time, which says "When you hit rock bottom, you've got two ways to go: Straight Up or Sideways!" I've spent two years struggling up and skittering sideways. I don't know that it will change anytime soon, but I know that the last time I truly felt I was balancing well was when I was blogging regularly.

So here I go, again.

I've been sick, I am sick. I may never be better. We have family living with us because I'm not well enough to care for my kids on my own, more than a few hours lays me out in bed. My capabilities are at an all time low, but this time we know why. I've struggled through Denial, Anger, Bargaining, Sorrow and flirted with Acceptance. Restarting my blog is another step towards acceptance.

I posted a while back about starting IV therapy. Ultimately my doctor and I decided that it seems to provide me the most benefit during the summer months. Lately I've been doing my physical therapy at the local pool with a water aerobics class. It seems to be good and I've stuck with it more consistently than any other form of exercise I've tried.

I keep relapsing, however. Just this last week and a half I've had a really nasty chest cold. I've been barely able to even sit up for more than an hour or two at a time, and I've lost a lot of the progress I'd been making.

I have to admit that I'm tired, frustrated, sad and exhausted. I'm tied of trying. I'm tired of being less than I know I could be if I had my strength back. I'm just so tired of sick.

But I've learned one very important thing about myself. I always keep going. I am unstoppable. "Going" for me right now means getting out of bed for more than two or three hours at a time, yet I do it! Being "unstoppable" doesn't mean what it did for me even three years ago; then it meant large projects and superhuman results. Now, it means baby steps! But I still make them.

My current goal? Get over this cold.
After that? Begin establishing daily habits again. Even if they're small ones. Perhaps especially because they're small ones!