“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.

 

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).

Jack

 

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.

Low bp 8915

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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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

How do I stop flinching?

So last week I had my blood drawn to check my hormone levels, after one month of being off the Metformin. We got the results a couple of days ago, my insulin is high again, and hormone levels are a mess. I’m frustrated… the Metformin did its job and regulated my hormones, but the side effects were unbearable, and going back on it is not an option.

My dad did some research on Florinef (a corticosteroid) which I have been on for 5 years now (along with a beta blocker) for my POTS. He found that with long term use Florinef can cause high insulin levels, and my new primary agreed that it was a possibility. Maybe my recent diagnosis of PCOS is false, and this is really a side effect of a medicine not meant for long term use. She wants me to see an endocrinologist and my cardiologist, and my main concern is that I will have to reduce or go off the Florinef. I depend on the Florinef to keep my blood pressure up, if go off it, I might start blacking out again. If my POTS symptoms get bad again, that would really limit my options for working. Perhaps I could be a secretary, or a cashier (if they allow me to use a stool so that I can sit when needed). If anyone can think of alternative jobs, please comment and let me know your ideas, I would really appreciate it!

I’m not sure how I feel about this… If I go off the Florinef, my hormones might return to normal, but my POTS could get worse and limit me to a job that I hate. Or… my hormones could continue to get worse off the Florinef, in which case we will know that its not the medicine and I can continue taking it to control my POTS. I could have a more enjoyable job! But there’s no telling what will happen if my hormone levels  continue to get worse. Mood problems? Weight gain/weight loss? Severe menstrual cycles? Hair loss? I really don’t know much about this area, and it scares me. Right now I’m feeling great off the Metformin, despite my screwy hormone levels, but I can’t just ignore a potentially serious medical problem.

On the bright side, my driving lessons are going great! Hopefully I’ll be able to take the road test by summer time and get my license, and even get my own car!

We noticed that a large garden supply store had a help wanted sign out front, so I applied for a job. I haven’t heard from them yet, but it was a huge milestone for me just to even submit an application. If they don’t hire me, there are several other stores that I can try in the area, or I could even get a summer job at a farm stand. Ok that probably sounds boring to you guys, but I like healthy food, and I like the outdoors, I think I would enjoy it.

My volunteer “job” at the barn is going great. I really get along well with Linda, who owns the farm, and its wonderful being around the horses. We already decided that I can’t handle a paying job, I’m not physically ready for that kind of hard work, but a few hours once a week isn’t a big deal. I want to keep volunteering as long as possible, its sort of the fulfillment of a childhood dream, even if I don’t get to ride. It brings back happy memories of my horse crazy days.

I’m trying my best to trust God, I feel like getting better is a “two steps forward, one step back” kind of process. Its scary, Its frustrating, I don’t like being blind about the future. Always bracing myself for whatever is coming just around the bend. The worry I feel is like a self-preservation instinct, its my way of “flinching” to protect myself from unseen threats. However, like flinching, it doesn’t do much good to protect me. Sometimes the blows come, sometimes they don’t, but there’s nothing I can do by worrying to protect myself from the punches. Why is letting go of my need to control so hard?

“Fear is not real. The only place that fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present and may not ever exist. That is near insanity. Do not misunderstand me danger is very real but fear is a choice.”
― Will Smith (After Earth).

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.