Just a little harmless brain damage, thats all.

No sooner had i written a post gushing about my new jobs than i found myself in a dangerous situation at work. In a massive twist of irony i suffered a heat stroke (at an indoor pool no less).

You see i work for two different pools, both are managed completely different when it comes to heat safety. Pool A as we’ll call it keeps the air temp in the 80’s, has large 6ft fans that we can stand in front of when guarding, and always makes sure guards get frequent breaks, even if the aquatic directors themselves have to jump in rotation.

Pool B keeps the air temp in the upper 90’s, there are no fans, breaks are less frequent, and as i came to find out… the heat swells to over 100° F in the mornings, and there are only 2 guards scheduled. Since both guard must be on deck the whole time, there are no breaks when opening.

I actually got myself into this mess. I picked up an opening shift off the trade board at Pool B, not knowing what i was getting myself into. After all opening shifts at pool A are my favorite and are one of the easiest shifts.

I was completely shocked by the heat when i got the keys an unlocked the door to the pool deck and stepped inside. I was also shocked when only one other guard showed up and they told me the bad news that there are never more than 2 guards in the morning.

I started feeling nauseous and dizzy within 45 mins, disoriented within an hour, and started to have tunnel vision and feel like i was going to pass out within an hour and a half.

Since ive had a heat stroke in the past, i recognized the symptoms and started to worry as soon as they started. I wasnt able to finish my shift, the other guard had to break the rules and guard by himself while i struggled to call and text other guards to find a replacement because i was so disoriented. Perhaps what i should have done is call 911, but being stubborn i just wanted to get a ride home and and told myself i would be fine once i cooled off and got my temp back down. That was a huge mistake and let to me evenually spending a few nights in the hospital anyway after multiple urgent care and doctor visits.

I would say the scariest part of a heat stroke for me is the confusion and disorientation. There were times i couldn’t understand people talking to me or read anything because all seemed like a foreign lanaguage, my brain which had been steam cooked on the pool deck just couldn’t process what was happening. My doctors compared it to healing from a concussion. Dizziness and vomiting is no big deal to me, been there done that, but altered mental status is a whole different ball game.

Needless to say i wont be guarding for pool B any longer, per the instructions of several doctors. Its not worth risking another heat stroke for a job that only pays minimum wage. I can continue guarding and teaching swim lessons for pool A and still get a good 30 hours a week where it is a safer environment.

Anyway, be careful out there guys, and dont hesitate to go to the hospital with symptoms of heat stroke. The autonomic nervous system is responsible for maintaining body temperature which makes dysautonomia and POTS patients especially prone to it. In the past i also suffered a heat stroke from simply taking a nap under a heavy blanket, waking up to a temp of 104.8° F!

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Chronic illness friendly job? Is there such a thing?!

Hey everyone! I’ve been totally absent from the blogosphere for the past year, and decided it was time to check in and read everybody’s posts.

Life has been (mostly) awesome. My hubby and I are happy, just working and looking forward to getting our first place together. Also, I got a new job a few months ago that I love and I feel compliments my health issues well. It might sound strange, but I got certified as a lifeguard early in the spring, and how I’m both guarding and swim instructing!

Lemme explain… so lifeguarding (for an indoor pool) is probably the most physically easy job on earth. I spend 25-50% of my shifts just resting on break depending on how busy it is and whether we are short or fully staffed. For example, I often work 15 mins on, and 15 mins off. Or 30 mins on and 15 mins off. Or 40 mins on and 20 mins off. I think the most I’ve ever been on deck guarding between breaks is maybe an hour, and even then, getting a break every hour is still way more down time than most jobs allow. Plus, even when I’m on deck guarding, I’m either sitting or standing still, or slowly walking around the pool, not expending much energy. In the rare event that I have to make a save, (I’ve had to make a few), worse case scenario is I have to pull the person up from the bottom of the pool, and swim with them a few yards to the closest side, where other guards are able to help me backboard them out and administer care until EMS arrive. Even when I’m feeling miserable I can manage that, as I’m a strong swimmer and swimming is the only form of exercise that I tolerate even when my POTS and other conditions flare.

Swim lessons are a bit different. They are exhausting, and sometimes trigger migraines depending on how much I end up exerting myself, and how much talking I have to do. (Some kids are happy to do all the talking so I can sort of rest my head, other kids who are shy or fearful need me to do all the talking to keep things upbeat and fun, which uses up a surprising amount of spoons). However, swim lessons pay very well, privates especially, and are scheduled in short shifts from 1 1/2- 2 1/2 hours. For example, This means I can work 1 1/2 hours of lessons in the morning, go home and nap all afternoon if necessary, then come back in the evening for 2 1/2 more hours. Even though I only worked 4 hours total, I get paid 6-10 depending on how many are privates. Also, they are super fun, and I love doing them. While my health may not allow me to always teach lessons on a daily basis, I’m going to enjoy them when I can.

Other positives I’ve found are less artificial light. Both pools where I work are primarily lit by natural light with large glass walls. I’ve found that overall my migraines have been much better since I left my retail job, and I think the primary reasons are less artificial light, and less stress.

Also, I have control over my schedule and how much or how little I work unlike my previous job. Both pools allow staff to set their own availability, and use a trade board to drop or swap shifts we don’t want, and pick up shifts that we do want. It gives me so much peace of mind to know that if I’m not feeling good I can put my shifts up on the board and someone else will usually take them. If I have a doctor appointment short notice, I can trade with someone, or if I’m feeling good, I can take other people’s shifts and make some extra money. I also get to have Sunday mornings off to potentially go to church when I’m feeling up to it, which my last job never allowed, and is an answer to part of my prayers! If only my hubby’s job would give him the same option so we could go together.

Negatives I’ve noticed are that although swim lessons are always at the same time, my guard shifts can be completely random within the availability I set. Especially if I pick up extra shifts off the trade board (which I often have to do in order to get enough hours). Shifts are also sometimes annoyingly short, which means I do much more driving around. For example, I might guard 6am to 9am, then go home and come back in the evening for swim lessons 4pm-6pm, then drive to a different pool and guard 7pm-9pm. Sometimes its nice having long breaks throughout the day to go home and rest or do other activities, and sometimes I just want to have an organized 7-8 hour day where I do it all at once. Also when hours are scarce, I might work only 2 hours day during the middle of the week, and then a long 12 or 14 hour day on Saturday, because those were the only hours available on the trade board and I needed them.

Something that could also be considered a negative is needing to take a swim test every month to prove I’m physically fit. I normally swim several times a week anyway though, even before I started this job, because it helps me manage my POTS and reduce my need for medications. So I guess from my perspective its not like I’m doing anything out of the ordinary. If anything I swim laps less now since teaching swim lessons is usually a workout all on its own.

Overall I would say the positives outweigh negatives, and I’m much happier and healthier working this job than retail!

Has anyone else found a job that works with them, rather than against them?

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“We Will” (Being sick doesn’t have to be lonely.)

Hi guys,  I know I’ve been awol lately, the past 6 months have been so stressful as Andrew and I prepared for our wedding! The planning, shopping, decorating, paperwork, counseling, and of course $$$$$. AHHH! I didn’t have the time or the energy to even sit down and make a blog post.

We got married on June 2nd, right on lake Ontario in NY. It was a gorgeous day out, which was somewhat of a miracle considering that it rained pretty much every day of weeks leading up to it. We barely even remember the ceremony to be honest, everything was such a blur and the whole wedding went by so fast.

We used a variation of this ceremony and vows – https://hodgepodgepilotswife.wordpress.com/2013/12/18/short-and-sweet-the-perfect-wedding-ceremony-script/

Among other things we changed it from “I do” to “I will” as we both loved the meaning of it, that we aren’t just promising these things in the present, but in the future too.

I was so worried ahead of time about how I would even make it through the day, getting up early to decorate, hair and makeup (I got extensions to go from a pixie to a long updo), and of course the 6 hour wedding itself. Thankfully I was so pumped full of adrenaline it kept me running like caffeine, and I didn’t fully crash till a couple of days later.  I won’t post a ton of pictures, I promise, but just a few.

 

We took our honeymoon down in Myrtle Beach SC.

(For those with POTS considering flying, I will warn you on that on the flight down I felt quite sick and was blacking out during takeoff. It wasn’t nearly so bad on the way back when I made sure to load up on salt and fluids. The descent didn’t bother me much at all either way.)

The trip was wonderful, despite a little rain and us both being exhausted. We can’t wait to go back as soon as we can.

 

I know being chronically ill can be incredibly lonely. Especially if you are home bound like I once was, and someday might be again. Only a year ago I was miserable, I thought no one would ever want to be with someone who is sick like me. I can’t believe how quick my life changed. Andrew and I met in the most random way at a friend’s sister’s grad party, and a year later here we are. God kept His promise and brought me someone who loves me regardless of my changing health.

So for all my sick and lonely girls out there, don’t give up hope! There are still godly guys out there willing to take “in sickness and in health” seriously! It can and does happen, even though i didn’t believe it could.

 

Surprise!

Its been a long time since my last post! I’ve been so busy, and so much has happened. As always I mean to sit down and write, but other things take priority, and sometimes blogging just gets tossed to the side.

To start… I met the love of my life last summer!

Andrew and I met in the most random way, (a friend’s sister’s graduation party), and have been together for 5 months now. It honestly feels so much longer. From the moment we met, Andrew and I were instantly comfortable like long lost old friends, and he is definitely the answer to many of my prayers.

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I never thought I would find a guy (christian or otherwise) who wouldn’t be put off by my health problems… but Andrew doesn’t seem phased in the least by my medical history. He takes everything in stride, and is constantly caring for and encouraging me both physically and spiritually. He makes me feel 100% safe and comfortable, even though most men terrify me so much that I struggle to talk and make eye contact. And whats more, he has lived right around the corner from me for years.

I’m simultaneously in awe of God’s planning, and ashamed of my own disbelief. While I admit that I’m still struggling spiritually, seeing God’s faithfulness in bringing us together has changed my perspective alot. ❤

My health has been “manageable-ish” since my last post, but I had an unexpected problem last summer shortly after meeting Andrew. (We had only known each other a couple of weeks at the time, but he handled it like a champ.) Basically… I started have swelling of my throat, tongue, and glands under my jaw. Trigger foods seem to be mostly dairy, red meats, nuts and seeds, chocolate, potatoes, and “junk food” of any kind.

I made an appointment quickly with my allergist who ruled out food allergies, ran some other tests, and concluded it was most likely mast cell related. She added 2 doses of zyrtec to my singulair and claritin, and I also take benadryl if i still manage to wind up with throat swelling. I have epi-pens available too, although thankfully I haven’t had a reaction severe enough to need them yet.

However this has caused a new problem, all those anti-histamines make me feel exhausted. Sometimes I really struggle to get through the day, and eating “high energy” foods for energy (my old stand-by) doesn’t seem to work anymore, instead it just makes me gain weight like crazy lol. Caffeine helps, but as I’ve mentioned before on this blog, caffeine is a nervous system stimulant and can be risky for POTS/Dysautonomia patients. I’ve accidentally had too much in the past and was extremely sick for days following, which makes me nervous about using it, especially on a daily basis.

It doesn’t help that I’m feeling extra pressure to be “functional,” because……. I adopted a horse! Not only does she need care, but I can’t afford to call in sick to work, I need every hour I can get, regardless of how i feel.

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That probably sounds really random to you guys (my handful of readers lol), I haven’t talked much about horses on this blog, but long story short, I’ve been in love with horses my whole life. I grew up riding and always wanted a horse of my own, but pretty much gave up on the idea when I became sick in my teens. I was too sick to even ride, let alone have a job to pay for a horse. I put it out of my mind, and pretty much forbid myself to think about horses while I was sick, it was too painful to think about yet another dream that wasn’t likely to ever happen.

Much to my surprise, my health started getting better a few years ago. I got a job, and have managed to keep it through the relatively mild ups and downs of my health. I started riding again, and decided that I wanted to get serious about having  my own horse. I know in the back of my mind that my health may someday crash, and I could loose my ability to work and therefore own a horse, but I don’t want to take this time for granted either. Right now i have the opportunity to live my dream, and I want to take it, even if it doesn’t last forever. I ended up falling in love with an ex-race horse named Ray, and adopted her from a local rescue, planning to hire the trainers at my barn to help with with re-training her since I don’t have the experience….

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However there have been several hitches to my plan….. first, the barn manager raised his prices dramatically only days after I had her trailed to the farm. Second, she has proved to be much more difficult to work with than my trainers originally thought. (She is hyper-sensitive to her surroundings, spooking at every tiny strange object and noise. She is too busy panicking and is too distracted by her own anxiety to pay attention to me or my trainers.) Third, my med related fatigue lately has been making it extremely hard to get to the barn. She is very sensitive and even the slightest change in her routine upsets her. We are starting to think that she is not a realistic match for me, or our family. Even my trainers are struggling with her and are both surprised, frightened, and frustrated.

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I’m heartbroken, but am considering taking her back to the rescue soon. This just isn’t working. She’s not a bad horse, she wants to please and tries really hard, she’s just too anxious to settle down and pay attention. She’s going to need much more professional training than we can afford, and will need a more consistent rider than I can be when my health goes up and down. Its a hard decision to make, especially around the holidays. 😥

I hope everyone has a good Christmas, and Happy New Year!

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I didn’t know fatigue came with an age requirement….

So…. I’ve been feeling pretty miserable since my last post.

24/7 migraines combined with nausea and vomiting, extreme fatigue, and another POTS flare. (This time with low bp on top of the tachycardia.)

If I’m being honest, the worst part is the fatigue. We’re talking deep down bone tired. “Can barely stay standing” tired. “Don’t give a rats A** about anything” tired. “Would volunteer for a coma” tired. Fatigue that I can’t even admit to my friends, family, and co-workers, because apparently I’m “too young to be tired.” Admitting that I’m tired only results in a series of lectures where all I can do is smile and nod, because I know I “look” healthy and they don’t understand.

too young to be tired.

I tried some drastic diet changes with no luck. (Mostly high carb raw vegan meals which used to help with fatigue in the past). I tried increasing my iron and B vitamin supplements. I also cut way back on my activities and exercise so that I could rest and save my energy solely for going to work. Nothing I normally do for fatigue is working, and I confess that I’ve gotten very desperate.

Desperate enough to start playing with monsters. Specifically….. caffeine during the day, and when necessary alcohol at night.

I call caffeine and alcohol “monsters,” because both interfere with nerve function and are typically forbidden in patients with nerve disorders. Caffeine is a stimulant which speeds up the chemical reactions between nerves, and is also a vasoconstrictor. Alcohol is the opposite, a depressant which slows down nerve reactions, and is also a vasodilator. I can speak from personal experience that caffeine is dangerous for patients with Dysautonomia/POTS. If I accidentally have too much, I crash and have disruptions in every major bodily system, and it can take weeks for me to recover. I don’t know what happens if I have too much alcohol, because I haven’t crossed that line yet, and I don’t ever intend to.

I’ve found that my current tolerance for caffeine is about 10mg. The same amount found in 1 cup of decaf coffee, or 1 Hershey’s chocolate bar. However, I need something more reliable than snacking on chocolate throughout the day. We looked for low dose caffeine pills, and couldn’t find any! The lowest dose we found was 100mg, most are 200mg (the same as 2 cups of coffee), or higher up to 400+mg. Then by luck we found these caffeine “mints” at GNC. Each are 20mg, and can easily be cut into 10mg halves. If I take one half roughly every 2 hours throughout the day, and it gives me enough energy (or at least the illusion of it) so I can get through the day. I’ve found that because it’s a vasoconstrictor, it also helps raise my low bp, reduces my blood pooling in my legs, and hides my joint and migraine pain!

It comes with side effects though…. The caffeine raises my heart rate and makes my tachycardia worse. It also seems to increase my sensitivity to light, noise, smell, and touch. The noise sensitivity in particular is a big problem since I cut my hair to a pixie, which means I can’t wear earplugs without other people noticing. I definitely wasn’t thinking about that when I got my hair cut, BIG mistake on my part…. and now I’m planning to grow it out to a bob or “lob” as soon my roots finish growing in.

Alcohol is pretty much the exact opposite of caffeine, and I’m also very sensitive to it. I use it as a sedative at night when I have a migraine so painful I can’t sleep. I mix 1-2oz of wine with 4oz of fruit juice, and it both sedates me and cuts down on the migraine pain so I can sleep. However, it also drastically lowers my bp and hr. Especially if I have it on an empty stomach, it can make me feel very dizzy like I’m about to pass out. So a word of warning I guess to other POTS patients…. if you have low bp and want to try wine, start small and have it with a BIG salty meal!

On top of my “experiments,” my primary wrote me a prescription for Scopolamine patches, to help with my nausea and vomiting. I don’t tolerate anti nausea meds by mouth, so the patches were the next best option, and I definitely recommend! My meals lately tend to be bland, chicken, eggs, rice, plain veggies, ect… but I’m keeping most of them down.

I’ve also increased my protein as much as possible to help build muscle to control my POTS, since I don’t have the ability to exercise regularly right now.  I’m still having blackouts on a daily basis, but at least I haven’t lost any muscle tone.

Anyone else have suggestions?!!

 

Upswing

I’m happy to report that I’m feeling much better since my last post. Gosh it was months ago, I always mean to sit down and write a post, but I end up spending 5 hours on Pinterest instead. Not even kidding, I’m a major Pinterest addict, it sucks the life right out of me.

Anyway, right after my last post I got my hair chopped to a pixie. It was the next day actually, I couldn’t stand the asymmetrical thing, it looked awful. The pixie looks 100 times better, but to be honest, I still have mixed feelings about it.

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I’ve had a million compliments on it, from friends, family, coworkers, customers at work, and even random strangers. I still miss my long hair though, and I don’t like the way short hair looks. Every time I see a girl walk by with waist length (or longer) hair, I instantly feel jealous.

However, I admit that chopping my hair has significantly helped my migraines. I’m still having them on a daily basis, but they tend to be less painful! Sometimes lately I don’t feel any pain at all with my migraines, I only have the secondary symptoms. (Secondary symptoms are things like dizziness, nausea/vomiting, light and sound sensitivity, auras, ect.) My migraines can still be severe, obviously, but at least they are not painful.

What I love most about having a pixie though, is that it is low maintenance. At the most I might straighten my bangs and thrown in a bobby pin before I leave the house, but that’s it. I don’t have to waste precious energy on my hair when I’m not feeling well. I used to easily spend an hour or more on my hair everyday, just trying to find the least painful way to put it up… now the most I might spend 3 or 4 minutes on my hair in the morning.

My blackouts and tachycardia are much better too… (not because I cut my hair, don’t be silly), but I started swimming again to build muscle like I used to do in physical therapy. My plan was to take some swim classes at our local community center so that I could be closely supervised by an instructor in case something happened. Unfortunately, I couldn’t find any instructors that were willing to deal with my crazy work schedule though. So I just went to the pool on my own, and got started.

It was REALLY difficult at first. The hardest part was just trying to breath. At first I had to keep my head above water at all times, because I was breathing so hard from the tachycardia. I couldn’t put my face in the water and rotary breath like most swimmers do. In fact I still struggle to rotary breath, even now that I’m feeling much better, but least I can do it for a couple of laps!

The most effective swim exercise (in my opinion) for POTS, is just using a kick board. By holding onto the kick board, it keeps your head above water at all times so you can breath, and all the kicking as you swim back and forth helps to build serious muscle in the lower body. (For those who don’t know, building muscle, especially in the lower body, is very effective in controlling POTS. As your body builds muscle, it also builds new blood vessels and nerves which improve circulation and help prevent the blood from rushing to your feet when you stand up.) Not to mention, it makes your legs and butt look good! (Just saying).

After about a month of swimming 2-3 times a week, my blackouts stopped and my tachycardia and shortness of breath are barely noticeable. I’ve been able to go back off the Propranolol, start using ladders again at work, and start horseback riding again!

Anyone else tried swimming for POTS? Lemme know how it worked for you!

Powered By Salt!

So, I have good news and bad news.

Good news is my vomiting stopped. This means I can have all the fluids and salt that I want. Basically I’m having between 6-9g of salt a day, with as much fluids as possible. I aim to have 1-2g with meals, 1/2g between meals, and 1/2 gram with morning and evening meds.  Plus additional salt as needed.

Sometimes when I’m eating lunch at work, I hear other employee’s talking about trying to eat healthy, lowering their bp, cutting out salt, ect. Meanwhile I chuckle to myself as I discretely pour 3 packets of salt on my already salty food.

I feel so much better taking the salt, especially when I have it at regular intervals, (2 hour intervals work best). My POTS is a little better, my migraines are a little better (sometimes taking a salt tablet helps with the pain even more than a big dose of Aleve.) Mostly though, I have more energy! I think low bp can make you feel tired. So eating lots of salt and raising my bp to “normal” levels, gives me more energy. Or at least the illusion of it anyway.

Of course having lots of salt has downsides. Such as bloating/water retention. My clothes are fitting tight, my face is a little more puffy than normal, and I’m struggling not to feel “fat.”

Unfortunately we had to increase my Proproanolol some more, and its definitely had an impact on my migraines. I’m really struggling with them, and so I’m doing everything possible to avoid triggers…. which led me to cut my hair short.

People usually talk about the “weight” of long hair causing migraines, but for me the weight doesn’t bother me at all. The problem is ponytails, buns, and braids tend to cause migraines instantly, unless I manage to put them in perfectly with no tension spots.  (Which happens maybe once out of every 100 tries.)  Yesterday was the last straw. I put my hair in a french braid to go to work, and 10 minutes later had a migraine starting. I tried re-braiding my hair, but it was too late. I put on a smile and pretended everything was fine all day at work, then came home feeling sick and exhausted.

Is going through all that pain almost everyday worth it? Just so that I can put my hair in “cute” braid? No. Its really not.

So I went to the salon, (much to my dad’s dismay), and got my hair cut into a partial pixie/asymmetrical bob.

 

I’m trying really hard to love it. But I don’t. I think it doesn’t look right with thick, damaged, fried hair that refuses to straighten. Not to mention my hair is a strange color, my roots are on the greenish side, while the lengths are a dingy ginger blonde. (Its as close to my natural color as I could get.)

Thankfully my hair grows really fast, between 3/4″ and 1″ a month, depending on what I eat and what supplements I take. Once my roots get to 3 inches long, I’m planning to go for a full pixie. Then maybe I can experiment as it grows out and find a short hair style that works.

Anyway, I promised some updates pics of Leo, these are pictures I took weeks ago. I wish I had more, but we’ve been cooped up in the house since winter started.

 

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I guess I was overdue for a flare.

To be honest I’m not feeling that great.

About a month ago I started having a bad POTS flare, followed shortly by an increase in migraines and some mild light/sound sensitivity. Then followed by some GI problems (mostly sluggish gut, nausea and vomiting, and IBS type symptoms).

I saw my primary and cardiologist and restarted a beta blocker for my heart rate (we decided not to restart the Florinef since my blood pressure seems stable). It definitely helps! But sometimes I still have dizziness and blackouts, especially if I don’t stand up slowly. The vomiting doesn’t help the situation either, I have to eat and drink in small amounts to avoid getting sick (especially at work or out in public), and then I get dehydrated which makes the dizziness and blackouts worse. Its really not that bad compared to my previous history with vomiting, its manageable and I don’t even feel the need to see a GI doctor yet. But its embarrassing.

Just last night I went to a friend’s house for dinner (which we scheduled weeks ago, before I started throwing up), I ate a few bites and had a few sips of water, but I didn’t want to “push it.” I reassured her mom that the food tasted great (which it did), I didn’t want to seem rude. Her whole family probably thinks I have an eating disorder or something.

Its a bit awkward at work too. My managers are being extremely understanding, some of them actually have had tachycardia in the past, so they understand to a degree what being POTSY it feels like! They offered me whatever accommodations that I need, even before I brought in doctor’s notes. (Mainly staying off ladders, or sitting down if I feel dizzy, running to the bathroom if I’m suddenly going to be sick, ect.) My co-workers on the other hand are starting to look at me funny. They don’t understand why I’m not allowed to do certain things, or why sometimes I look fine, and other days I look miserable. I guess my health is really none of their business anyway, but trying to explain myself just seems to make the situation worse.

I don’t want this post to be all doom and gloom though. So I’m gonna share some pictures of our puppy!

You might be wondering what happened to Jack (the pit bull we adopted in the summer).

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Unfortunately the adoption didn’t work out, he really needed to be in a home with owners who are experienced in rehabilitating abused dogs, and also with a person who can be home all day to supervise him. He was a sweetheart, didn’t have a single mean bone in his body… but he had a number of behavioral issues, and he couldn’t left alone or crated either as he would panic and hurt himself.

He was quickly adopted by another family, and I haven’t heard anything about him since. : (

My dad and I decided to try again and I bought a collie puppy from a family who breeds them. We’ve had him since November, and he’s a little over 4 months old.  These are my favorite baby pictures.

 

I don’t have any current pictures on my computer of him at 4 months, but I’ll put them in my next post!

 

 

 

 

This isn’t a crossroad.

The last couple of weeks have been a shock to me. I’m not even sure how to process whats happening. Long story short… I got the job! I also finally got my diploma! So within a week, God provided me with a car, my high school diploma, and an awesome job. One after the other like dominoes. Part of me feels like I’ve been waiting for this for so long, and now its finally happening. And part of me feels like I’ve been launched back into life at warp speed with no time to adjust.

Not only did God provide me with a job, but He provided the “perfect” job, considering my physical limitations. I spend most of my day watering and pruning flowers, helping customers, restocking shelves, and cleaning up around the garden center. Its fun, and cheerful. Its physical enough to enjoy since I love being active and on my feet. Staying active is the only thing that calms down my mind and silences my obsessive worrying/intrusive thoughts. But its not so physical that I’m making myself sick everyday trying to keep up.

The managers and other employees are kind, friendly, and understanding. They are happy to work with people who have disabilities. Even though I haven’t submitted any paperwork through my doctor, they can usually tell if/when I’m not feeling my best. They are happy to help me when needed, and understand if I need to take it a little slow.

There is a mandatory 1 hour lunch, plus optional breaks, which are great when I’m not feeling well as it gives me a significant amount of time to sit and rest to get my strength back.

Also, it pays better than I expected, and its very close to home (which is important if I’m not feeling well at the end of the day and don’t feel comfortable driving a long distance). I was able to get regular hours too, which are convenient for my dad since I don’t have my license yet.

I spend most of my time outside, but being inside doesn’t bother me either since the store itself is huge. I can’t quite explain it, but it doesn’t take much to make me feel trapped. Open spaces allow my mind to calm down, relax, and breath.

The almost constant social interaction helps too, in ways that I can’t explain either.

I can see God’s hand of provision all over this job. Last year if someone told me that I would be feeling better and have a car and a job, I would laugh and say they were crazy. There were so many obstacles…. blackouts/absence seizures meant that I couldn’t drive. Lack of energy, debilitating daily migraines, dizziness, and vomiting would prevent me from having a job, especially a full time physical one. God promised me last year that He could do the impossible, and I’ve been holding on to those promises for dear life. Hoping for a miracle is one thing, but seeing God perform miracles right in front of my eyes is very different.

I should be praising God and leaping for joy! And part of me is. The other part is still cowering in the corner, waiting for the carpet to once again be ripped out from under me.

I was hoping that my mind and emotions would instantly heal once I entered the “real world” again, but it doesn’t work that way. The guilt, fear, pain, and doubt are still here, threatening to eat me alive every night when I drop my guard and crawl into bed. I don’t notice them much while I’m at work, being active calms my mind and allows me to focus on the tasks in front of me. But they consume me as soon as I come home.

Hannah (my best friend who has also been sick for many years) and I have repeatedly talked about chronic illness and PTSD (or Post Traumatic Stress Disorder). I know what you’re thinking… and no, I haven’t been in mortal combat. I haven’t killed anyone. I haven’t watched people die, or witnessed unspeakable violence.

But I have been sick for 6 years. I’ve had everything and everyone I care about ripped from me, repeatedly. I’ve spent years in solitary confinement. I’ve had to relearn social skills, like body language and conversation. I’ve had friends, family, and even doctors turn their backs on me. I’ve gotten better, only to fall sick again and again. I’ve spent countless days puking my guts out, and countless nights crying myself to sleep. I’ve developed OCD, depression, and anxiety. I’ve struggled with suicidal thoughts, and things that I can’t even talk about about. I have nightmares every night, some of them are so vivid I never forget them. There are places that I’m terrified of, because they cause flashbacks of fear and pain. My life for the last 6 years has been a constant stream of negative events, and my mind and emotions are stuck in a loop of fear and negativity. I’m perpetually in fight or flight mode, bracing myself for the next threat to come around the bend.

This isn’t normal.

I’m not normal.

I’ve been to hell and back.

I’m not ok.

When people meet me, they have no idea what I’ve been through. They have no idea about the mental and emotional war I’m fighting everyday. They treat me like any other normal, sane, healthy human being, and they expect me to act accordingly. So I put on my make up. I do my hair. I smile. I act confident and happy. I put up the wall that they expect to see, and it usually works. I feel safe there, behind my wall. But just once, I wish someone could understand. I wish they could see though me, and tell me that they’ve been here. I wish they could tell me things will get better, that someday I’ll heal. That someday I won’t have to fight anymore. I’m tired. I’m confused. I don’t know where I am. This isn’t a crossroad with its convenient intersections and street signs telling me which way to go. Its a tangled mess, I’m being pulled in every direction, and it hurts.

“The LORD will fight for you; you need only to be still.” -Exodus 14:14 NIV

 

 

He is Risen!

I hope everyone had a good Easter! Mine was exciting… I went to church, talked with my friends, had a big dinner with my grandparents and some of my aunts, uncles, and cousins. It was nice to talk and actually participate in the conversations, whereas sometimes I am either not feeling well, or just too shy to speak up.

Things have been going pretty well. I’m on a 1/2 dose of the Florinef, and I had some blackouts and tachycardia as we adjusted the dose, but things seem to have leveled out. I think my heart races when I stand up more often with the decrease, but its not bad.

I got my first car! Its a 2003 Subaru Forester, and I’ve quickly fallen in love with it. Its much easier to drive than the van my dad has been teaching me in, and it feels like a perfect fit for my small body. Sometimes it feels surreal when I’m driving, I was afraid that I would never be able to drive or have anything resembling independence. Even just having my own car keys is mind blowing to me, being able to see them and hold them in my hands.

Car2

I love that the interior is tan, not grey. I’m finding myself hyper sensitive to colors (along with music, lighting, tv shows, ect.) I’m still struggling a bit with my mood, and I easily slip into a state of depression, especially in the evenings. I’m not sure if its hormonal, as my blood tests have been off recently. Or perhaps I’ve lost my mind. I’m afraid that I’ve been irreparably damaged from being sick and isolated for so long.  I’m afraid that I’ll always be struggling to find happiness and purpose, even if my health continues to improve and I’m able to have a normal life again. I’m afraid that even if my “dreams” come true, I get a job, make close friends, get married, have a family… That I’ll still being crying myself to sleep at night. Feeling worthless, ugly, dirty. My feelings are so complicated and I can’t sort them out. I’m trying to find the source of these feelings, so that I can correct the problem.. but I can’t. Its not just one thing, or one event that caused them. They’re all tangled together like spaghetti, or like the roots of plant. So instead of fighting to untangle them, I’m trying to set the mess aside and focus on God. It feels like I’m constantly at war with my mind and emotions, and its exhausting. I’m so tired of trying to figure it out.

I’m excited to say that I have my first job interview at a nearby Lowe’s in the morning! My cousin even helped me pick out an outfit. I’m trying to hold on to the positive things, and praise God for all the blessings He is giving me. I’m really hoping to get a job as soon as possible, I think that being out of the house, being around people again, and doing something productive will allow my mind to begin to heal.

Inspirational Christian Easter Quotes