“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?!!

 

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!

 

 

 

 

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.

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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

Now hope does not disappoint…

This update might be a little overdo, but the last few weeks have been pretty stressful. Long story short… I decided to go off the Metformin completely since I was still having some side effects, primarily mood swings. I went through another week of brutal withdrawal. More anxiety, depression, vomiting, diarrhea, shaking… Even after the week was over, it took a while for my mood to stabilize and to get my appetite and strength back.

It was another eye opening experience, and I have come to fully believe Romans 8:28:

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”

In my opinion, depression is a form of insanity. Or at least it can be, the kind I experienced certainly was. It was like the world around me wasn’t “real.” It felt like living in a dream-state, where nothing I do, or see, or touch is real. Even the little things that I normally enjoy like watching tv, listening to music, taking a relaxing bath, or eating a piece of chocolate, Its like they wouldn’t register with my brain. They didn’t exist. They weren’t really happening. They were empty. If anything they made the depression worse as I realized how empty those things were and that they couldn’t comfort me. During that week the only real thing was Jesus. The only thing holding me together, giving me hope, and anchoring me to reality was Jesus.

There’s some irony in that, at least from a worldly perspective… That God… who I can’t physically see or physically touch… is more real to me than the tangible things around me. The things that I can see, and the things that I can touch. To a non-believer that doesn’t make sense. But to someone who has a personal relationship with God… who has felt His presence, who has seen Him answer prayers, who knows that the things of this world are empty, and has their hope fully in Jesus Christ… they know exactly what I’m talking about.

God spoke to me over and over that week, not only through the depression itself, but through His word. The most important message being that I’m looking for joy, fulfillment, and satisfaction in all the wrong places. I need to get my eyes off myself, and off the world around me, and back on Him. Only He can satisfy me, only He can comfort me, only He can give me the peace, and joy, and sense of purpose that I’m looking for.

There’s a reason that I run to Him when I’m in pain.

I know who my Master is.

I know that the things of this world are empty.

God also convicted me that I need to be in His word more. Reading a daily devotional and going to church a couple of times a week isn’t enough, not if I want a deeper relationship with Him. I need to be reading His word everyday, listening to worship music (instead of worldly music), and listening to teachings online or the radio. I need to be careful what I watch on tv, what I read on the internet, and what I may or may not be allowing to pollute my mind.

God reminded me of His promises. That He has a plan for my life. That He will finish the work He started in me. That all things work together for the good of those in Christ. That He is all I need, and He will never leave me or forsake me. That His grace is sufficient for me. That He can, and will, do the impossible in my life. That I don’t need to be afraid.

The truth is that I inadvertently asked for this “trial.” I’ve been struggling with fear and hopelessness for a long time, and I’ve been praying for God to break me of it. The thing is, I wanted it to be easy. I wanted God to just reach down and magically take the pain away. Unfortunately, God doesn’t work like that. He molds us and shapes us through trials, like a potter molding clay. I’m blown away (again) by God’s faithfulness, and His ability to take something horrible (like medication withdrawal), and make something beautiful come out of it. I know that God has used the last 6 six years to help me grow spiritually, even though at times the pain seemed pointless and things didn’t make sense.  I’m excited, and nervous, and curious about God’s plan for the rest of my life. I’m trying hard to let go of my fear about the future, and my “need to know.” I don’t need to know the future, because God is already there, and He will help me get through it just like He always has.

Jeremiah 29:11

 For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.

Romans 5:3-5

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.  Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Psalm 119:36-37

 Incline my heart to Your testimonies,
And not to covetousness.
Turn away my eyes from looking at worthless things,
And revive me in Your way.

Psalm 119:71-72

It is good for me that I have been afflicted,
That I may learn Your statutes.
 The law of Your mouth is better to me
Than thousands of coins of gold and silver.

Psalm 116: 7-8

 Return to your rest, O my soul,
For the Lord has dealt bountifully with you.

 For You have delivered my soul from death,
My eyes from tears,
And my feet from falling.

NKJV

I’m finally graduating!!

This is a celebratory post! I finished my last online course today, and now I’m waiting for my final grade so I can get my GED.

I’m also studying to get my learners permit, and we are working on selling my pedal harp so that I can get my first car!

Last week my dad and I visited a nearby lesson and boarding stable.. I asked if I could start volunteering there (doing barn chores) to hopefully work towards getting a paying job. They said yes and I start (tomorrow) on Thursdays. Hopefully we will be able to work out another day so that I’m at least at the barn twice a week. In addition to gaining experience and references for a paying job, I want to see how my body handles the physical work. I’ve also been exercising daily to try and build up my strength and endurance. For those who don’t know me well, I was horse crazy growing up. I secretly still am horse crazy, although I tend to keep it to myself lol. Off and on when I became sick sometimes I would fantasize about what it would be like to ride again, work at a stable, or maybe even own my own horse someday. It seemed impossible that I would ever be feeling well enough to handle the physical work and stress, so this opportunity feels surreal.

I’m excited but also impatient. Part of me is terrified that this “good spell” is only temporary, I’ve had the carpet ripped out from under me so many times that I believe it’s traumatized me. I want everything “NOW,” just in case months or years down the road my world comes crashing in again. I’m trying to remind myself that I’ve been sick for a long time and need to have patience with myself. Rushing into things too quickly could backfire.

For example last weekend my dad and I went to a Prophesy Conference at a nearby Calvary Chapel church. It focused many topics such as the purpose of prophesy in the Bible, how Israel fits in to prophesies about the end times, the many prophesies that Jesus fulfilled, and creationism. There was even a messianic Jew from Jewish Voice Ministries who talked about how he got saved, and the Bible in general from a Jewish perspective. It was very good and my dad and I enjoyed it, however on the second day of the conference my dad and I went out to eat at a restaurant during the lunch break. I ordered what I thought was grilled chicken, but it turned out to be fried and battered. Annoyed, I picked off as much of the breading as possible and tried to just eat the chicken. I also had some potatoes with unknown seasonings, and I ate most of a piece of pie. My stomach felt funny for the rest of day, but I thought I was going to get away with it. Then the next morning I drank 1/2 a protein shake for breakfast and immediately started throwing up and having severe stomach pain. It was Sunday morning, and it was my turn to help out in children’s church, so I was really upset when my dad had to call and let the pastor know I couldn’t make it. For a little while I was terrified that somehow I had triggered a relapse by eating some questionable food, but I’ve been able to eat and drink fine since the incident. Hopefully I learned a lesson and I’ll be more careful with what I eat, even on special occasions.

It reminded me of how important it is to stay in touch with my doctors, even though I’m feeling relatively good at the moment. I met with my new primary recently and I was impressed! She reminded me alot of my old primary, she was kind, patient, and took the time to really listen and let me explain when necessary. She said that she has other patients with autonomic dysfunction, and she was willing to go out of her way to research my symptoms. My new GI doctor on the other hand has been rude and unprofessional, and despite his promises, we haven’t heard from him since our last appointment months ago. We are going to try again to find a new GI, since truthfully I’m still struggling to eat. I’m doing well off my tube, but I can only handle eating 1 meal a day, the rest of my diet needs to be liquid. If I try eating 2 meals a day my gut becomes sluggish and everything stops moving, even when I do my best to eat healthy, stay hydrated, and take an embarrassing amount of laxatives daily. Even if a new GI doctor doesn’t have any ideas, I want to keep in touch just in case things get worse.

I didn’t mean to leave things on such a negative note… Honestly I am feeling good, and I’m excited about suddenly having all these possibilities in front of me! I’m praying and trying to give these fears to God. I’m not the one in control, and worrying won’t gain me anything.

Which of you by worrying can add one cubit to his stature? -Matthew 6:27″

Hello 2015 : )

First of all I want to wish everyone a happy New Year (and a belated merry Christmas!)

My last blog post probably warrants an explanation, so I’ll do my best to make sense of things : )

I was having constant blurry vision for about 3 weeks. Since it didn’t seem related to my migraines we made an appointment with my old primary (I have yet to meet my new doctor). She agreed it might be medication related, and said to try going off my Topamax and reducing my Metformin. Going off 2 medications at the same time probably wasn’t the best idea! Now we aren’t really sure which medication was causing the blurry vision, or which one gave me the severe withdrawal symptoms. Since I was on Topamax for years I’m guessing that the withdrawal symptoms were from the Topamax. The Metformin, however, was a new medication, so I’m guessing that the blurry vision was from the Metformin. It would be unusual I think to suddenly develop a side effect from the Topamax since I’ve been on it for years with no problems.

Anyway, as I went off the meds I started having severe anxiety. By severe, I mean SEVERE. I was shaking, throwing up, having diarrhea several times an hour (especially at night) purely from the anxiety. I have never felt fear so strong in my life. All I could think about for a week straight were my worst fears. I don’t mean spiders, or the dark, or the monsters under the bed, (although I admit I’m afraid of those things too). No, I’m talking about the fears that constantly live in the corners of your mind, whether you acknowledge them or not. The ones that quietly torment you during the day, and then crawl out of their hiding places to eat you alive at night. For me those are all fears about the future, or my perceived lack thereof.  What if I never get better? What if my dad dies since I can’t take care of myself? What if I never get married? What if I never make real friends again? What if I get better and manage to make friends, but then become homebound sick and loose them all over again? Can I keep enduring that kind of loss? What if I loose my sanity completely? What if I’m never able to do anything good with my life? What if I spend the rest of my life feeling lonely and worthless? And probably the worst of all – What if God abandons me too?

God spoke to me everyday that week in my devotions, and in a teaching at the end of the week too. We almost didn’t go to the Bible study. I wasn’t feeling good. My dad was tired. It was miserable out. It was a long drive. I sat there during the study resting my head on the table, doing my best to hide the occasional shaking, and hoping that I wouldn’t have to make a mad dash for the bathroom. But the message was the same as it had been all week. “Trust Me. Wait on Me. Even though its scary. Even though everything seems impossible. I am in control. I am faithful. I will never leave you. Don’t consider your present circumstances or your physical limitations, nothing is impossible for Me.”

I really hate it when people say “God will never give you more than you can handle.” That week was definitely more than I could handle. I don’t know about you, but sometimes God needs to break me. Not only am I cowardly, but I’m incredibly stubborn. Trust me, its not a good combination. I hold on to my fears with an iron grip. I’m “stubbornly afraid” if that makes any sense. God broke me that week, but it was the good kind of break. He simultaneously showed me how powerless I am, and how faithful He is. I finally said “Ok God, I give up! I’m not the one in control, You are.”

Since that week I’ve been feeling good. Really good. My vision is back to normal. My migraines are much milder than usual. My vomiting is gone and we were able take out my feeding tube, and my motility has improved enough for me to eat some solid food. My POTS symptoms are manageable. My sensitivity to flashing light is much better, so much that if it continues I might get my learners permit. Most of all, I have energy. For those familiar with the spoon theory, it feels as though I’ve gone from a handful of spoons a day, to more than I could be bothered to count.

Maybe going off the Topamax and reducing the Metformin made me feel better. Maybe It’s a normal fluctuation as my symptoms tend to ebb and flow. Or maybe this is God, and He’s just been waiting for me to surrender to Him. I don’t know whats going on, or how long this good spell will last, but I’m praising God and I intend to make the most of it. Not a bad way to start the new year!

Luke 1: 37 – For with God nothing will be impossible.