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!

A world of discovery and potential recovery!

It's been so long since I posted. The last year and a half has been difficult, to say the least, but there is hope on my horizon! This is going to be a little long, but it's life changing to me, so bear with me!

I'll try to fill in the details later, but the short story is that I have been diagnosed with a few Dysautonomic Disorders (which affect the autonomic nervous system... y'know, the one which controls pulse, blood pressure, breathing, etc)

One is called Postural Orthostatic Tachycardia Syndrome (or POTS) and the other is called Neurally Mediated Hypotension (or NMH).

Basically, my heart beats too fast and my blood pressure reflex is on the fritz so my BP is prone to sudden drops when it should actually be rising.

In a nut shell, just sitting upright is difficult for me. Think "running a marathon every minute of the day when you're not lying down!" and "Prone to a light-headed dizzy feeling when first standing up" That's the POTS and it's exhausting!

Then there's the NMH...think "gets light headed and nearly passes out when standing in line/standing around talking at social events/sitting upright at the dinner table/sitting in church/sitting at the computer/bending-then-straightening(I did not realize how much this function is a major part of our every day!)/going from sitting-to-standing or otherwise changing her orthostatic position" and you'll get the basics.

There are only a few treatment options for individuals with autonomic disorders. They know what's happening, they just don't know  why! One difficulty patients with POTS face
is varying degrees of hypovolemia (low total blood volume.) We know I'm so affected due to my medical history and due to recent events.

For the last year we've been using compression and diet to try and offset my symptoms. The last few months we've even added medications to help me retain fluids and raise my blood pressure, but haven't seen a noticeable improvement.

Having concluded that I am continuing to get worse, the doctor finally felt we'd reached a point where more aggressive treatment is appropriate. (Thank goodness!) For the last few weeks we've been monitoring how I respond to regularly administered saline IVs (a therapy they know can help POTS patients but which they prefer to use only after having exhausted less invasive options.)

The results have been promising! We know indisputably that my pulse is lower and my BP higher after an IV, but we weren't sure the insurance would cover the therapy for the length of time we need for me to be able to complete the recently released POTS Recovery Exercise Protocol (developed by a doctor in Huston, TX the regimen results in 70% of those who are able to complete it no longer presenting symptomatic POTS characteristics!)

I've been trying to complete the protocol for nine+ months with no success! It's a three month protocol with two months of strengthening and prep for a total of five months, but I can only manage a week at the most before a surge in my symptoms nocks me flat!

My doctor and I have been able to verify that regular IVs help me overcome my "exercise intolerance" (don't laugh, it's actually a symptom of POTS!) and we're hoping that with regular treatment I'll finally be able to complete the POTS protocol.

The only hitch has been figuring out the logistics of regular saline administration and presenting it to the insurance in a way that they'll be willing to approve.

IVs are hard on the veins, and pic-lines make even simple things like bathing difficult. I already have a really hard time with basic grooming tasks; and I need daily infusions, which would wreck my veins, so we'd decided the best route would probably be a chest port. Having the port installed wont be a problem, but providing support for the saline and monitoring of the port could be potentially difficult to get approved.

My Dr has been talking with the home health care companies who normally oversee things like that and working with them to be sure my case has a good chance of approval. On Tuesday we reviewed my health notes, and the criteria the home health company gave us which generally result in a case being approved, and we made sure to document things we otherwise might not have. He submitted my case to them the same day.

Guess what? I just got a call from my Dr's office scheduling me for a pre-opp eval (tomorrow!!!) with the surgeon who'll be installing my port! The home health company doesn't anticipate any problems with my case and told my Dr it looked good!

I'm so excited I could pop! So many forums, blogs and websites where POTS is the topic of discussion have posts or threads in which patients talk about the turning point in managing their illnesses being when they started their IV therapy. And I'll be starting mine, soon!

If I had the strength to dance, I totally would!!! Watch out world, I'm on my way to recovery!

Sunday Musing

It's been a very difficult month.

Before I say this let me ask, gently, please don't criticize me for my feelings about motherhood and my children lately. I know it hasn't been good. This is just where I've been for a while.

I fell back into a very dark place, where I found myself thinking almost every ten minutes, "I just don't want to be mom for a while...". Every day I would get stuck in this funk. I didn't want to wake up, I resented my husband's work and his steadiness and reliability at going to work every day when I just wanted a break, I've spent a lot of time "leaking" tears of quiet despair. I wanted so badly to just have a week to myself where I could be ME, and not just "Mommy." I haven't been a good housewife, or a good wife, at all. Bare---Essential---Minimums. That has been all that I've been capable of. My kids have been fed, clothed, changed and had their physical needs met. I'm afraid that I've struggled to provide more than the bare minimum of their emotional demand, though. And through it all, I've cried and cried. I love them so much, yet I couldn't get past this feeling that I just wanted them to Leave Me ALONE!

Then, this weekend, I had a small revelation.

A month ago I was doing ok. I was tired (what mother of a five-month-old isn't?) but I was getting things done and doing my best to balance my needs with the needs of my family. Then, a great thing happened for a associate of mine, she made Sales Director. At her debut I was so inspired. I was so excited, because I was FINALLY working my own business better than I ever had. I was going to be in her shoes, hopefully in just a few months. I was building my own momentum and I was sure this was my time.

On my way home from her Directorship Debut, I started composing my own Debut speech in my head. Most debut speeches in my field have similar formats. You start by describing your life before you began your career, the changes this career hs made in your life, and the feelings you've had as it's blossomed, then go on with where you're headed and how you'd like to get there. There's thanks to those who've helped you, and praise for those who've taught and mentored you.

Well, I spent a few days thinking about what I wanted to say.....the problem was that I got stuck on "before the decision to build my own business....etc,etc,etc." I kept thinking I needed to sit down and write it out, make it as short as possible and then move on. There have been a lot of good things in my life, and I know that. But it's the pain that we overcome that writes a story of triumph. And my thoughts, because I didn't write it down and move on, became focused on the pain that came before.

Well, this weekend was a two day training conference that I attended. Part of this conference was lessons on overcoming poor attitude and negative thoughts. It was during this conference that I realized what had started my very QUICK decent into deep depression. Almost as though I could feel someone prompting me to Just Write It Down, I picked up my pen, stopped taking notes, and then wrote down my back-story. It took just over one-third of a page. I then followed it up with almost two pages of notes about the positive changes that having my own business has made in my life, and the choices I've made that have benefited my family and my own personal growth because of it.

And I felt so much better. Suddenly the world opened up again, and I could feel myself bringing my thoughts and spirit more closely into alignment with God's desires for my life. I know that what we think about, we bring about. I know that our attitude determines our altitude. I believe in the law of attraction. And yet I totally missed it. I am very outspoken about speaking positively about ones self. I do not tolerate negative self-talk in any  of my friends. And yet, my husband pointed out yesterday, I am very poor at applying the same rules to myself.

And then today, while I was leading the music at the end of our Sacrament service, a hymn I've heard all my life (and truthfully disdained a bit, because when you're in a dark place and someone tells you to "think a happy thought" you just want to smack them) was sung as the closing hymn. As I listened to the words, and thought over the progress I've made the last few months, I remembered:

Sitting down at the computer, several times, to write a negative post. Then reading a few of my past accomplishments before writing, and having such a change of heart that the previously negative post I'd all but written in my mind came out as being challenged, but hopeful to overcome my challenges and aware of the things I HAD done. 

Just yesterday, being on the verge of walking out of my conference, because I just didn't see the point anymore, and then taking a moment to purge the past as quickly and painlessly as possible, get it all out, and then not only set it aside, but to illustrate the changes and differences in me since I began my sales career. To acknowledge the accomplishments and strides I'd made, and to outline the hopes and the vision I had for my future.

Eight years ago, when a caring Bishop advised me to write in my Journal, every night, three things about my roommates that I liked. And the way that had helped me to deal kindly with them. 

That I had told Mike yesterday that I needed to take time each day to write down the good things in our life, because I seem to function best when I take a moment each day to be grateful and to acknowledge the good things.

And as the words of the hymn "Count Your Blessings" were sung, such a powerful affirmation came over me. I knew in that moment that I just might have finally come to understand the truth of that message. It does not mean "you know, you really should be grateful, because somewhere there's someone else who is suffering more" (which I've been told SO many times) It's tied in to so many other principles, and I've only today begun tying them together in my heart. It means that it's not just about "thinking good thoughts" but about pro-actively doing something each day, and especially when you're down, to ward off the feelings and desires of the Adversary. It speaks to us, not to say "you should be grateful, you know, dolt!" but to remind us of a divine pattern that has always been present, we've just forgotten about it. It's not a mocking message of "chin up! Despite it all." It's a message to us of EXACTLY HOW to overcome those negative feelings we're sometimes plagued by.

So this beautiful Sunday Evening, as I renew my own dedication to take a moment each day for gratitude; not only for the things I have, but for the things I'm learning and the progress I'm making in life; may I extol the virtue of both the process of being grateful and the practice of writing it down. And, may I implore you to take up both practices in your own life, especially if you find yourself in a dark and desperate place; looking to the heavens and asking "HOW am I supposed to have joy in this life?!?"

He hears us, and he answers in so many ways. We just have to be willing to listen. I leave you with the words of my new favorite hymn.

When upon life's billows you are tempest tossed, 

When you are discouraged thinking all is lost, 

Count your many blessings; name them one by one,

And it will surprise you what the Lord has done.

God Bless You All!
Crystal