it’s okay to be NOT okay…

12088079_843003679131846_2270655745633071542_nHappy Dysautonomia Awareness Month! I’ve been trying my best to spread awareness to others…every October I make it my mission to educate as many new people as I can…just ask anyone on my Facebook friend list! I’m sure it’s becoming a bit obnoxious…but it’s so important! It’s because of this awareness month that I decided it was time to sit down and get the blog juices flowing again…so here we go…

If you’re looking for a blog entry about being positive and fighting your way through this, today’s edition may not be for you. If you look back over my journey you will find many posts with this positive undertone, but not today. No, today is dark, but it will be honest.

After a stretch of time of feeling really good (for me…which is probably 60% like my old self) this flare has totally knocked me on my ass. It started with a few days of back to back (blinding, sleepless nights, dizzy, vomit inducing) migraines, followed up with days of palpations and inability to control my own body temperature, and topped off today with extreme fatigue, dizziness, and bradycardia. For those who don’t know what bradycardia is, it’s when the heart rate is too slow. Typically, a POTsie has tachycardia (postural orthostatic TACHYCARDIA syndrome…) but because our systems are so out of wack, spells of our heart rates being too slow aren’t unheard of. Let me tell you though…it is scary as hell. My body has been trained to not totally panic when the tachycardia sets in. I can tell myself “you’re not going to die, it’s okay, just breathe, sit down and breathe…” and I can push through the 175-200 beat per minute heart rate. This afternoon, when I was *lucky* to hit 50 beats per minute, I was terrified. I was so scared that my heart was actually going to stop beating. How unfair is this?! I have to chose between feeling like my heart is going to beat so fast it’s going to explode, or beat so slowly that it just may stop?! No thanks, body. I’d like a refund!

Anytime a new symptom pops up like this so does a new level of anxiety for me. I know that with this syndrome I’m supposed to “expect the unexpected”…but holy crap…a person can only take so much before the darkness sets in. I could feel the depressive thoughts as they started to creep in…it felt like a wave that washed over me and the pressure was too much to stay afloat. Through my sobs this afternoon my eight year old asked me, “do doctors ever put people to sleep when they are sick…like they did to Gabby?” (his beloved Pug) Great. Now my baby is worried, which makes me worry even more. My four year old came over and put her hand on my chest and said “it’s okay, Mama, your heart is just broke today.” How unfair that a four year old even has to think about this?! And then the depression and fear increases by the second because I worry that I’m impacting so many other people negatively. It’s a rabbit hole that feels endless.

So, why share this? If there is no silver lining, then what’s the point? Because chronic illness isn’t just happy quotes and funny memes. It’s not just being strong and powering through..it’s a life altering, at times debilitating, depressing, scary, self-esteem crushing, roller-coaster from hell…and I want to get off the ride!! (if only that were a choice!) I guess my point is this…it is okay to NOT be okay. And instead of pretending (for other people) I’m choosing to lay it out there. I know my fellow POTsies will understand…sometimes it’s MORE exhausting to pretend you’re okay than it is to have POTS. Today was bad. Really, really bad. Tomorrow may be too…but eventually the ride will twist again and I’ll be back on top…even if it’s just for a moment! Hopefully I’ll remember to write that day too…thanks for reading and coming along for the ride!

 

 

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Dyer’s Do DC!

Is it possible to be jet lagged traveling to and from a city that is in the same time zone?! On the same coast? Well, either way, I’m going to blame this exhaustion on that! I’ve been home for 2 days now and I’m still coming back down to reality. This is the second time I’ve attended the Dysautonomia International Conference, and I am certain that it will not be my last. It was amazing, informative, inspiring, gut wrenching, and everything in between. But, I don’t want to get ahead of myself here. Let’s set the stage for this epic adventure:

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My mom, dad, husband and I traveled to DC from Maine to attend this conference. From the get go, the trip was riddled with hilarity. We almost missed the plane, and not because we were late to the airport, no, because we were eating in a restaurant directly across from our gate and all 4 of us missed the boarding call announcement, oops! Then, we arrived in DC, gathered our bags and stood outside in the 100 plus degree heat waiting for our hotel shuttle…that never arrived…because as we reread the flyer we learned that the shuttle only runs from the OTHER DC airport, opps! Then, our taxi was an old worn out Prius that had no steam to make it up hills. We would go from 65mph to 30mph the second a slight hill popped up. It was a lonnnnnng ride, and needless to say, $56.00 and a seemingly lifetime of hours later, we were READY to arrive at the hotel. We had a delicious dinner and hit the sack early so we could spend the whole next day exploring DC…or so we thought…

For those of you who read my blogs, or have POTS/Dysautonomia yourself, you may already see what’s coming next. I gave a little hint before when I said the heat was over 100 degrees…that type of weather and a POTSIE do. NOT. mix. But, I was bound and determined (some may say I’m stubborn!?) to explore DC and have fun with my family. It started out perfectly…and ended with me throwing up in an Uber….yes, classy, I know. We started the morning by hopping on the metro for a promised 20-minute ride to the city. Well, that turned into much longer as there was a fire on the tracks and all trains were frozen in place…and hot…and I was freaked out by being underground with fire…and hot…did I mention hot?! Once we made it to DC we walked the National Mall, saw the Washington Monument, the WWII Memorial, and made our way to the Lincoln Memorial, we saw a Trump impersonator doing Yoga (hilarious!), the Korea Memorial, and ate Italian Ice …it was gorgeous but very, very, very hot! By the time we wound back up to the Washington there was no shade left on the path. It was roughly 106 degrees with humidity, and even after *trying* to stay hydrated and on top of things, my body gave up. I couldn’t go on. I took my vitals…my pulse was 175 and climbing. I could feel my heart beating throughout my entire body. Part of POTS is the inability to control body temperature, so even though I was sweating, I felt hot then cold then hot again. I was dizzy and panicked and thought I may be having a heart attack. It was awful, and embarrassing, and scary. I felt terrible for my family being stuck there with me in that condition…I couldn’t walk to the metro stop even though it was in my sight, we were so close, but I couldn’t do it, so the options were 1) call an uber or 2) call an ambulance…honestly, at the time, I would have taken the ambulance in a heartbeat. Paul got the Uber and loaded me into the backseat. Bad idea. It was cramped and hot and I just couldn’t get my body to calm down. My mom was rubbing my head, putting cold water on my neck, but nothing was helping. I tried to close my eyes, it made it worse…but with my eyes open the light sensitivity made it feel like I was being stabbed. There was no winning, no way out, and then I threw up. Yes, ladies and gentlemen, right there on the DC turnpike, I opened the door and threw up. Humiliating does not even begin to explain it. Thank goodness my mom told the Uber driver to pull over! We made it back to the hotel where I doped myself up on medication, Paul had to hold me up to take a cold shower (very romantic, ugh!), I forced down some water and some food, I cranked the AC down to 64 and slept the next 12 hours.

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I woke up feeling better, but still not well. How could I let this happen? How could I do this to myself?! It was too much. I pushed too hard. Why do I do that? It was a morning full of self-hate…and then I went downstairs. There really is nothing that can compare to being in a room full of people who get it. They feel it too. Not just the symptoms, but the mental anguish that comes with a chronic illness. They just get it. From that moment on, I felt better. I was kinder to myself.

The conference was amazing. The information about the most current research (auto immune connections, genetics etc) was so inspiring. It gave me hope. We learned about the importance of properly taking care of migraines and sleep (two of my biggest challenges!) so I’m anxious to put some of that information into my treatment plan. We met doctors, patients, and caregivers. We saw POTS service dogs that sense when their owner is about to pass out…the dogs keep them safe in this event. Amazing. Again there were people who were wheelchair bound unable to live alone to people who hold full-time jobs that manage their symptoms daily. It’s such a wide spectrum when it comes to how this illness affects people. It’s such a sad, unfair, down right shitty way for us to all be connected, but I wouldn’t trade this group of people for a million bucks.

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Bottom line is, I learned a ton, met some amazing people, laughed harder than I have in months, saw the light bulb going off with my husband and father as they tried to understand more deeply (my mom already does!) and had an absolutely unforgettable time. This conference is life changing….and we will be back!

 

Let’s talk about exercise…or not?

Before I developed POTS I was not a big fan of working out. I was a fan of eating whatever the hell I wanted, not lifting a finger and not gaining any weight…well, after I hit about 27 those days were over! I needed to start paying more attention to what I was putting into my body. Then, two babies and a chronic illness later…here we are.

…and I still am not a fan of working out! But, in the spirit of regaining my feisty “let’s kick POTS in the ass” self, I’m diving head first into a workout routine. When your cousin (and my biggest cheerleader in life) is a fitness guru and owns a CrossFit gym, there really isn’t an excuse to sit around! The number one recommended treatment for POTS (excluding medications) is exercise.

I completed my first training session today. Amy (said Guru), my mom, and my daughter all took part. We reviewed the basic movements that I’ll need to know for future workouts, and we completed a workout in the gym. Assault bike (and YES, that bike does assault you!), push press, and Russian twists were on the menu today.

It wasn’t pleasant, but I did it…it made me feel strong, and empowered. A little more than 1/2 way through the workout the exercise intolerance kicked in…and before you say, “well, that’s what you get for being out of shape!” exercise intolerance is a real thing, and it can be debilitating for a person with dysautonomia. It can cause your body to physically shut down. Since our hearts and autonomic systems can’t handle regular, normal movements, adding exercise and strain to our bodies can be debilitating. Check it out:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4336603/  I began to feel like I was going to throw up, or pass out, or even cuter…BOTH! I finished a round on the bike and I felt it setting in. I downed some water and sat down on the floor. The room was spinning and I was thinking death might be sweet relief 😉 But, it passed, I slowed it down, and I finished my workout. That’s the triumph. I finished!

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I think it’s easy to lose sight of how much this syndrome impacts your life…until you start fighting back. Then it kicks you down again. My plan is to keep fighting and getting back up. Amy is going to personalize a plan for me so I can keep working with the equipment I have at home, and I’ll report to her as I go…she even said I could yell at her on facetime…I told you she was pretty awesome! 😉

It will get easier over time…right?!

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Keep it movin’ Samantha…

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It’s been a long time since I’ve had time to sit down and write a blog. So, on this sunny Sunday afternoon, while one child is at a birthday party, and one child is snuggled up to my side watching Disney Jr, I thought I’d carve out the time and just DO IT ALREADY! I’ve found that this has been a recurring theme in my life lately…just stop making excuses and do it! To say I’ve been stuck in a rut is the understatement of the century! More like stuck in the Grand Canyon!

It’s such a strange way to go through life, this whole ‘living with a chronic illness’ thing. It’s a roller coaster that just never stops. It’s full of good days and bad days, and flare-ups and glimmers of your old self. It’s happy and it’s frighteningly dark and lonely. As I am rapidly approaching the (gulp) three-year anniversary of receiving my diagnosis, so much has changed, but so much has stayed the same. I’m better than I was, but I still have Dysautonomia. I’m proud of myself for how far I’ve come, and I’m disappointed in myself for losing the steam to keep fighting. It just feels so exhausting at times. For the first year or so I was so motived to get my life back, that it was all I could focus on. Granted I spent months bedridden, so I had a lot of time on my hands 😉 I pulled myself out of bed and worked out every single morning…hard. I saw many, many doctors and tried many, many different medications. I fought with insurance companies for the right to see specialists. I raised awareness. I traveled to DC to connect with other POTS patients and to lobby Congress. I lived and breathed my health and well-being, and raising awareness of POTS. So, where is that person?! I need her back…

I could easily list a hundred reasons why other things have taken over priority in my life. My job is busy, my kids are busy, my life is just busy…but you know what? People who live with a chronic illness don’t get the luxury of using those excuses. It’s just not an option. While I’ve placed so much pressure on myself to be successful in other areas, I’ve forgotten the most important piece to the puzzle. My health. Without that, the rest of it doesn’t matter anyway. Lately, I’ve been fatigued…like ‘fall asleep while sitting at a red light’ fatigued, been battling daily migraines, fighting brain fog, spinning through bouts of dizziness, and overall just having far more bad days than good. Something’s gotta give!

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So, I guess this blog serves as a “new year’s resolution” of sorts. I know what I need to do…so it’s time to refocus myself and do it! In an effort to get the boxer back in the ring, I’ve registered for the Dysautonomia International Conference in D.C. this summer…and I will be joined by my husband, mother, and father! We’ll connect with other POTSIES and world-renowned doctors, and we’ll learn about recent advances in treatments. How awesome is that?! I’ve registered for the POTS 5k in Massachesuettes in May—which I plan to RUN…well, jog…let’s not get ahead of ourselves… 😉 And I plan to ask my support network (yes, all of YOU) to keep giving me some pushes…I really need it! What can you do?! I’m so glad you asked…

*Don’t be afraid to talk to me about POTS or Dysautonomia…I’ve been pushing it under the rug, and guess what? It’s still there…so let’s talk about it! If you have questions, ask!

*Let’s go for a walk…or a jog…or something active…I may lag behind…but I need to get back out there!

*Remind me that priority #1 is my health…my kids need me to focus on this again! They deserve a mommy who isn’t dragging ass at 4pm!

*Don’t judge me if I simply have to say, “no”. Part of this illness requires that I really slow down when I need to…it’s how I don’t burn out totally.

*Continue to love and support me like you already do…I couldn’t do it without you! ❤

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Santa’s Little Helpers…

As a child, Christmas was my favorite time of year. I loved the excitement, the music, the lights, the movies and the time with family. It felt like magic came to life. Now that I’m an adult and especially since I’ve developed this chronic illness, Christmas has taken on a life of its own at our house. Our tree is huge, the lights are ablaze and the music is always blasting. I’m proud to say that both of my kids have made “Elf” references this Christmas season and both of them can sing carols so loudly that my ears bleed. 😉  I want my children to experience the magic that I loved so much, and they do! I want them to feel the warmth of the holidays, and I want them to think of others in need.

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One of our traditions with Colby (our 7-year-old) is taking a trip to Boston Children’s Hospital to deliver toys to children who will be spending Christmas in the hospital. This is always such a humbling and amazing experience. Colby has been dedicated to this cause for three years, and his commitment amazes me. Colby lost one of his best friends, Olive, while she underwent a heart surgery at Boston Children’s. Every year he saves his money, purchases and collects donated toys for “Christmas for Olive.” Each trip has been an adventure, and he takes something different away from the experience each time. This year, I think because he’s matured so much, he really seems to have taken it all in. When we came home all he wanted to do was cuddle. When I was tucking him in a few nights later he said, “mama, I think Olive is so happy that we go to Boston…and I think those kids need lot’s of presents, more than Sophie and I do.” My heart melted…and then he said, “I know your heart feels sick sometimes and it’s good that you go to Boston to feel better…they are cool!” I was blown away with his maturity, and I was so proud to have the honor of being his mom. My illness used to scare him, and now I think it has helped mold him into the young man he’s becoming.

The next day I was exhausted…fatigue had set in, I was livin’ the POTS life…aka laying in bed! I could hear my kids whispering in the hallway…Colby was leading the charge on something. The next thing I knew they came in with their blankets and curled up beside me. “Let’s watch a Christmas movie mama, we’ll lay with you when you’re sick,” Sophie said.  I laid there with a kid on each side of me feeling so blessed and happy. My children are kind, (They are also wild, sassy, bossy, funny, and typical siblings…) but in their hearts they are kind. In a weird way, I have my POTS diagnosis to thank for this. Because of this illness, it forced us to slow down, and to refocus on what’s important…and this is it.

Merry Christmas!

 

Time to get back on track!

Welcome back readers! It’s been seven months since I last published a blog entry…so much has happened I’ll give you the basic run down…

  1. I graduated and earned my master’s degree…if you have been following my journey you know that this degree had been the cause of many tears–both happy and sad! I didn’t know if it would be possible for me to finish since I became sick and received my POTS diagnosis right in the middle of my program…but, I’m so happy (and proud!) to report that I did it!13230335_10103016562461499_4456928795486197737_n
  2. Along with my masters I accepted a new job, and I am now an assistant principal of a high school…I know what you’re thinking…”what?! is she crazy?!” the answer to this is just simply, yes. Yes, I am. But, I do love it, and I absolutely refuse to let my illness keep me from realizing my dreams…#potscansuckit! 13939418_10103212792664599_2801525538302671462_n
  3. We relocated our family. This is also something that I’ve written about time and time again. We now live where my commute to work is three miles. You read that right, THREE miles. My doctors office is in the same town, and it doesn’t take us an hour to get in and out of town. The potsie in me is SO happy with this change. I feel safer here…everything I need is at my finger tips. This was a very good move for my health…and sanity!
  4. My amazing support team and I participated in the POTS 5K in Massachusetts and it was an experience that changed my life. It was joyous, and scary, and hard, and wonderful all at the same time. Sometimes this illness can make me feel so alone, but this made me feel so supported, and so connected to others. AND we raised a ton of money for Dysautonomia International. A win, win! 13131334_10103005550549459_7963799357294592701_o-1
  5. Our family added a new member…a little French Bulldog named Bruin. He’s the best snuggle buddy and he never leaves my side when I’m not feeling well…I swear he just knows when I need him.15193585_10103464013975079_8712222644147824511_n

Those are the major milestones…so that brings us to today, and why I decided to start down the blogging road again…

I am in a flare, a bad one, and I realized that I’ve stopped putting focus on my recovery…I went through a very long time of feeling okay…never feeling “normal” but feeling like I was managing my symptoms. I fell off track, and it caught up with me. When I first began to get my life back I was on top of my game. I drank a gallon of water everyday,  I ate healthy (with lot’s of added salt…thanks POTS), I was religious about taking my medications, I worked out every. single. day, and I was open, honest and engaging with people about this syndrome. For me, that was the magic recipe, and I need to get that back.

You hear people say it all the time…the first step is admitting you have a problem. Well, I have a “problem” and the problem is that I have a chronic illness. Even though I am positive (99% of the time), and I absolutely refuse to let this illness run my life, it’s still there, and pretending that it isn’t is just making me sick(er). I need to remember that there is no shame in this…and blogging helps me to connect to others who are going through the same thing. It also helps the people around me to understand what is going on. My mom reminded me today, it doesn’t make you look weak…it shows your power and strength. So, be ready for some more regular updates…you’ve been warned!

So, what did POTS do to me today? Well, I’m so glad you asked! Today I woke up with a migraine from hell…and I just couldn’t keep it at bay. I had to take my rescue med, which exacerbates my tachycardia and dizziness. I was walking to the stairs to go get my laundry, had a pre-syncope episode, everything went black…and down the stairs I went. The worst part? I was home alone with my 3 year old and I totally scared the crap out of her. That really is the worst feeling…it hurt more than the fall. I wish I could keep my kids sheltered from this shitty illness…but sometimes it takes over our household…and it did today. I’ve been on the couch binge watching netflix, and feeling pretty sorry for myself…but more for my husband and my kids. This just isn’t easy on anyone. images-2

Tomorrow is a new day, and I’m hopeful that I will get back on track soon. I will push through it…I always do! My husband reminded me today that I have a 100% success rate of getting through flares…so I know this can be done. So, tomorrow marks day 1 of the old program. Water, healthy living, exercise, medication, extra sleep, and more transparency about what’s going on.

Take that, POTS!

some up and some down…

Just passed the 4 week post surgery mark! Things are a little more settled in some ways, and a little more unsettled in others. First and foremost, I have to note that I am 10 days midodrine free! That’s right ladies and gentlemen, my blood pressure has been stabilized and the dizziness is under control, on my own, without the assistance of a medication…can I get an amen?! This is HUGE. I’m trying not to get too exited about it…it feels like if I say it out loud then the universe will come back and knock me down a peg…so everyone, please, knock on wood for me! Midodrine is a great med because I can take it as I need it, so if I relapse a bit, I can hop back on the  med and find some relief. But, for now, 1 POTS med is going unused!

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In other news, I think I may be pushing myself a bit too hard and my post surgery body is starting to get mad at me. I’m having more bleeding than I should, and according to the doctor, I need to go back to bed and rest. Ha! Easy for her to say! Does she have two little ones home on April vacation?! I didn’t think so! 😉 I did have no choice but to listen to my body yesterday…the morning was great, I was able to take the kids to the playground, and treated them to their first “summer”ice cream cone! When we got home I suddenly began to lose a lot of blood and had a migraine that made it impossible to open my eyes, let alone sit up and watch the kids! The fatigue was unimaginable. I had to send out an SOS to my aunt, and she came to the rescue and  took the kids. It was one of those moments that I felt so thankful to live so close to family, and also so incredibly guilty that my kids have to have a mommy who is chronically ill. Heartbreaking to say the least. Lot’s of tears were shed after they left. It’s not all funny puns and cute memes, being chronically ill is a bitch, and can be so depressing…

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Today is a better day, the sun is starting to peek through the clouds, and the kids are giggling and happy. They seem to have already forgotten the drama from yesterday. They are so amazing. Colby (6) woke me up this morning by rubbing my head and asking if it still hurt. Sophie (3) jumped up on the bed and asked if I needed her to make me some pancakes. It was adorable. Sure, they were totally buttering me up because they wanted to have a popsicle at 8am, but the sentiment was there.

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The lesson from all of this is something that I’ve talked about before, but I still struggle with it. I need to ask for help when I need it. Maybe even before I need it! My aunt totally saved me yesterday…and she was happy I reached out. Instead of feeling insanely guilty when I need help, I need to just relax and know that the people who love me WANT to help. It’s a work in progress…16ce6d52b29b86ec1f467f85d5c165e1.jpg

 

 

 

1 Week Post-Op

Well that week was a total blur! I’m 1 week out from my surgery, and I’m actually feeling pretty well. (now everyone knock on wood!!) I didn’t talk too much about the surgery (my nerves were so high about it all), so there may actually be people who don’t know what I’m talking about…so let’s back up.

Anyone who reads my blog knows that I have a chronic illness that is very, very complicated and it has many layers to it. POTS effects everything in my body. It’s easy to just explain it away as a “heart condition” but in actuality it is heart, brain, blood pressure, breathing, sleeping, positional, etc etc etc. There is not a system in my body that isn’t impacted by my dysautonomia. So, being a girl (yes…male readers you know where this is going…) and having a large amount of blood loss on a regular basis was really messing with my body. Everything was off and I was unable to recover. People with POTS have been found to have lower amounts of total blood volume anyway…so imagine losing blood on top of not having enough to start with! Luckily for me my team of doctors decided to suggest, and put their stamp of approval on a (dun dun dunnnn) hysterectomy. Now, a lot of people have said “but you’re too young for that!” or “oh you poor thing” but let me just say, please don’t feel sorry for me. I am done having babies, our family is complete, and if you were living in my body from hell (as I so lovingly refer to it), you’d understand. This is the very best thing that I could have have done. This is a HAPPY thing. I am fortunate that they didn’t have to take my ovaries, so no menopause for this girl…not yet anyway! 🙂 They took out everything else…and I mean everything. Did you know that they recommend taking the tubes out now too? Apparently there is a cancer that can pop up there that is really hard to detect and treat in a timely manner…who knew?! So those puppies are gone too.

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So, I went in last Thursday morning at 5:30, I was the first surgery of the day…the best time slot to have! Everyone was wonderful. Everyone reviewed my information from Mass General and adjusted my plan accordingly. I was pumped full of extra saline and potassium to keep my POTS at bay. At one point before surgery I heard my team talking about me in the hallway…”she has POTS, but it’s so well managed!” “I wonder how severe it is? She looks good!” That made me feel pretty good. In fact a week before my surgery at my check up at Mass General we talked about backing OFF of some of my meds because I have been doing so well….but, I’m not one to brag! 😉 Anyway…surgery was a success, everything went exactly as it should have, and I woke up a big groggy bundle of fun. From the sounds of it, I “f*ing loooooved” the nurses, I called my dad and tried to talk to him about my vagina being packed with gauze (lord knows my dad must have been HORRIFIED…and trust me, I am now too…) and I went on a rampage to my mom and husband about someone that I clearly find to be distasteful…we’ll just leave it at that! All in all…I kept the recovery area well entertained.

I had to stay in the hospital overnight so make sure everything was okay. I had to show them I could walk, and pee…those were the two requirements. I had visitors that I vaguely remember, I was hopped on meds for most of the night. They brought flowers (and my in-laws sent me a beautiful bouquet!) and magazines and little stuffed animals, I’m a lucky lady! I just want to say to my husband, my mom, Heather, Tim, Kylie and Audrey…anything you heard come out of my mouth that night is NEVER to be repeated! 😉 …and Tim, delete that voicemail!

I went home the next morning and have been slowly starting to recover. I am able to be up right more, and move around more comfortably. I’m off the medication and I’m trying to keep myself busy. I can feel my body start to decondition from being in bed for those few days. It’s CRAZY how quickly POTS can sneak back in and take over. My tachycardia has been back, and my blood pressure has been bottoming out making me insanely dizzy. Both of those symptoms had been under control for a long time. To combat this I’m just trying to stay up right and retrain my body to get back in line. It’ll be a battle until I’m recovered enough to start walking and really working out again. Every day it’s a fight, but I know I can do this…I’ve done it before and I can do it now.

I would be remiss if I didn’t include that this has been a terribly scary ordeal for me. Surgery is complicated for someone with POTS, and I’m SO SO SO lucky that I woke up without any issues or major long term damages or set backs. I’m hopeful that this will all be worth it and my quality of life will only continue to improve!

I’m out of work for 6 weeks to recover…so wish me luck on finding ways to keep myself busy for that long…maybe some online shopping?!… 🙂

Until next time ❤

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so, it’s like that, life?!

I got home from work, sat down and immediately started writing this blog. I wrote it, and then published it only in the POTS groups and forums that I belong to…then I thought, why wouldn’t I share this with EVERYONE? If this blog is an outlet for me AND an avenue for me to spread awareness…REAL awareness, then why am I sugarcoating the truth when things get bad? Why am I holding back and only sharing with others who have my illness? The more I thought about it the more I realized that it might make me uncomfortable to be so raw, and it might make others uncomfortable to think of me this way…but ya know what? Too bad! Let’s all be raw, real, uncomfortable and HONEST together. It’s the only way to truly share this experience. So, I came back, added this new beginning, and I’m sharing it all with you…it’s not pretty (as chronic illness isn’t), so don’t say I didn’t warn you!

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So, this is how it’s going to be, life? I’m one of the lucky ones who gets to deal with an illness that doesn’t ever go away? Okay. I’m okay with that. I can deal with it. But, you know what? My kids can’t…and they shouldn’t have to! They shouldn’t have to have a mommy who loses her sh*t over nothing because she’s in the middle of a flare and just cannot fake it anymore. That’s a pretty crappy mommy to have…and I hate that part of my illness…and that part of myself.

I’ve been trying not to accept the fact that I’m in a flare and feeling lousy. I’m exhausted and dizzy and battling a continuous migraine and overall just feeling like complete crap for several days. I can start to feel the depression and the desperation creeping in because let’s face it, going from feeling semi-okay to flaring is enough to make the happiest person feel pretty damn low. I’ve spent my days teaching, forcing the fluids and the meds so I can try and resemble a normal person. I plaster on a smile and keep moving through my day. My BS tolerance level is at an all-time low right now…which in turn has made me tighten the reins in my classroom…instead of having my normal “let’s figure this out” attitude…I’ve had a “cut it out and act like the juniors and seniors that you are!” attitude…yea, I’m probably not winning any popularity contests with them this week!  The bottom line is by 3 pm I’m spent. I’m toast. I can’t handle ONE more thing. I just can’t. So, today when my 6 year old got off the bus and left his gloves in my classroom…I got home and freaked out. Is it a big deal? No. Not at all. It’s just gloves. Did he deserve it? No. Absolutely not. I just couldn’t handle ONE more thing. When my fully potty-trained three year old refused to go to the bathroom without me because she was digging in her heels, I freaked out. Was it a big deal? No. Not at all. She just wanted some time with her mommy. Not a big deal at all. I just couldn’t handle ONE more thing. I just needed a minute to sit down until the dizziness passed. She looked up at me with her huge doe eyes and I totally broke down. I cried and cried and cried. I apologized to them both over and over and over and over. I told them that I was sorry and I was just feeling sick. Is that the truth? Yes. But, do you think they care why I raised my voice at them? Nope. And I’m still heartbroken over it. The illness took over…it won…and that’s just not okay. Even as I write this I feel absolutely horrible and the tears are flowing. My children should not be victims of this illness too…it’s just not fair.

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I hate having POTS. I hate everything about it. I hate feeling this sick, I hate having to explain to people why I’m so tired, so pale or so groggy. (and ps…it’s super rude to tell someone who has a chronic illness that they look sick, or tired, or pale, or not themselves!) I’m sick of having to say “well, POTS stands for…no, I’m not talking about marijuana” I hate it. I hate that people seem to forget I’m sick sometimes…sure it’s not something that should be talked about ALL the time…but just because someone has an illness you cannot see doesn’t mean it’s not there. I just hate that. I hate it when people say “you were doing so well, what happened?!” Well…this is the way my illness works…it’s up and it’s down sometimes for no rhyme or reason. It just is…and I hate it. Instead of asking me that…please people, just say “I’m sorry you’re not feeling well, can I help?” By bringing up how well I was doing only makes me feel sad…and makes me feel like I have to rationalize with you why I’m still sick. I just am, and I hate it. POTS and any other chronic illness for that matter, just really, really suck sometimes….and you guessed it, I hate it.

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I know the sun will shine again…and all of that other warm and fuzzy stuff that I usually say…I know this is just a flare…and I know that my kids love me and they will be okay. But, for now…for tonight…I’m just sad, defeated, and feeling scared that POTS is starting to take over again…(not going to happen on my watch)…but for tonight, I’m just going to hug my kids…and cry it out.