“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.

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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!

 

 

 

 

Recipe for hope.

I have a confession to make. Normally I can’t stand the season of fall. I hate watching the leaves die and fall off the trees, until everything looks naked and bare. I hate feeling the air turn colder and colder with every passing day. I hate seeing stores flooded with Halloween, Thanksgiving, and Christmas decorations all at once (and WAY too soon.). When I was little, I hated fall, because I knew it meant summer was over and I had to go back to school. When I got sick, I hated fall for the opposite reason. I had to watch from my bedroom window as all the neighborhood kids boarded the bus without me, missing my friends, and knowing they had moved on with their lives while I was trapped in limbo.

But this fall is different.

I turned 21 in September. We went out to dinner to celebrate, and I even mustered up the courage to try my first glass of wine!

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I got my driver’s license, and drove myself to the barn (one of my favorite places) to celebrate!

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I started college!

I’ve managed to get a job, and keep it, for over 6 months!

I’m even considering getting my own apartment next year, if things continue so well.

A year ago, if someone told me that I would accomplish all of this, I would have thought they were crazy. Last fall, I was on an NJ feeding tube, due to severe vomiting, and going out to eat for my birthday was out of the question. I couldn’t drive either due to blackouts caused by flashing light when riding in the car. I couldn’t work, and therefore college seemed like a pointless idea. I certainly never imagined I would have enough independence to consider getting my own place. I hated myself for being a burden on everyone else. I hated feeling useless and worthless, and I felt trapped with no way out.

This fall, things seem different. The cold air is a relief from the crazy summer we had. The trees are not dying, they are celebrating by bursting into vivid color. The decorations make me smile, and so does the smell of pumpkin spice everywhere I go (literally, its everywhere). I love waking up in the morning, and seeing the frost covering everything like lace.

As always, I’m a mix of emotions. I’m still struggling with depression, fear, and doubt. I’m still struggling to trust God, even with the basic things. Everyday is an exhausting mental, emotional, and spiritual fight. But finally, there’s something new. Maybe for once, there’s a little hope mixed in with the fear and doubt. Maybe for once, things don’t taste so bitter, and things don’t seem so colorless. Maybe for once, life altogether, doesn’t seem so pointless. Maybe for once, after all this time, God is up to something. Maybe someday this recipe will make sense.

Its been a busy summer!

I know its been a while since my last post. I feel like so much has happened, but I would sit down to write, and just didn’t know what to say. I had some bad vertigo this morning and had to call in sick to work (I’m still a bit dizzy), So I figured I might as well get a blog post done while I’m stuck here on the couch.

Physically I’ve been doing great for the most part. My blood pressure dropped randomly a couple of weeks ago.

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Also there were a few weeks mid summer when I started throwing up, but it was probably migraine related because I was overdo for my shots. That’s about it.

Working at Lowe’s is going great, and the managers are always understanding when I’m not feeling well (migraines, tachycardia ect), or need help with something. My plan was to look for a full time permanent position in the fall, but then I decided to enroll in a distance learning Vet Tech program through San Juan College. (Classes start today!) My dad isn’t thrilled with my decision, he thinks I’m rushing things and need to slow down. Maybe he’s right, but after years of  feeling “stagnant” and being unable to make any progress with life, it feels good to rush a little bit. I was even able to secure an internship in a vet clinic, since my dad and I are friends with the vet! (The internship won’t start till spring or summer 2017.)  I don’t think that I can handle working full time and taking college courses, especially since I come home with migraines and just want to rest after an 8-9 hour day at work. So I applied and got a part time job in the paint department! I love it, mixing paint is fun, I’m basically getting paid to play with colors, and I get a good arm workout in the process. I have a lot to learn though, there are so many different products and brands, all with different purposes, and most customers don’t even know what they want. They just hand me a paint chip or something to color match, and say “I want this.” Then we have to play 20 questions to narrow things down, and I have to nag the department manager or other employees with questions to make sure I’m doing the right thing. Hopefully I’ll get better at it with time, there’s just so much to learn and absorb.

Of course the downside to working part time, is that I’m broke. I love horses, and I was hoping to start 1/2 leasing, or saving to finally have a horse of my own, but even if i could manage to work full time and get my schoolwork done, I wouldn’t have any time or energy left over for a horse. It will have to wait till I’m done with school (if my health holds up). Maybe if I’m lucky I can still keep taking riding lessons once or twice a month, I don’t want to stop riding completely and get rusty.

My driving lessons are going pretty well too, and I’m hoping to get my license soon after my birthday. I’m turning 21 in a month, and it would be simpler to just wait till after my birthday since insurance rates change, and they need to issue a new driver’s license. There are still times when I feel uncomfortable driving (especially when I have migraines), but I’m trying to be thankful that I’m able to drive at all, even if I need to be cautious or follow restrictions.

I even managed to get time off this summer for a vacation, and we went to visit my best friend. Neither of us were feeling our best physically or emotionally, but we made the most of it.

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Speaking of emotions, my mood is what I’ve really been struggling with this summer. I’m having problems on and off with severe anxiety and depression, and I’m not sure whether its hormonal, or mental, or spiritual, or maybe all three mixed together. It does seem to change around my cycle, which gives me hope that its hormonal and I haven’t gone completely batty. At the same time, I don’t respond well to birth control, metformin, melatonin, prozac ect, so If it is a hormonal or chemical issue, I don’t know what to do about it. I tried licorice root (active ingredient glycrrhizinic acid), which can raise blood pressure (good for some POTS patients), and lower testosterone and estrogen which can stabilize mood. It worked well for about 3-4 weeks, then stopped working and I weaned off it. I also tried L-theanine, and SAM-e, and both help, but I try to save them for my worst days and emergencies, because if I don’t want them to wear off and stop being effective.

Its gotten so bad that I’m afraid to be home alone, and my dad and grandparents finally said yes to having a dog. I adopted a pit mix earlier this month, and it was the best decision I ever made.

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Most people don’t realize why we adopted him, they assume he’s just another pet. The truth is he’s my “emotional support” dog. He’s my child, best friend, boyfriend, and therapist all rolled into one. The ironic thing, is that I’m his “emotional support” person. He’s definitely been abused, but we don’t know much about his history. He’s nervous and jumpy, especially around men. The vet thinks his first owner used him in dog fights (or at least attempted to). He has bite marks all over his ears, face, neck, chest, and front legs, a broken tooth, and a chunk missing from his ear. My dad thinks he’s been beaten too, he’s terrified of anything you carry in your hands, even if its something harmless.  Sometimes he’s the one who needs comforting, and it snaps me out of my negative mindset. Suddenly I need to be the positive and reassuring one.

Be prepared to be spammed with dog pictures in all my future posts ; )

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The last one is from this morning. I fell down in the living room from the vertigo, and Jack wouldn’t stop licking me and pushing me with his nose till I crawled over and got on the couch.

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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