tomorrow is the day

   Hi everyone! Just wanted to provide ya'll with a quick update on how things are going.

   First off, I survived my first official SAT test! It took me eight hours but by golly I finished! I still don't know how I managed to finish other than sheer will, strength and determination and on strength not my own. A huge thank you to everyone who prayed for me Sunday and to my sweet momma who spent the whole day helping me through and my sweet daddy who kept the boys out of the house until I was finished testing. I wish I could say I'll never have to take it again, but I know there will be at least two more times I take the SAT, as well as multiple ACT testings. I went to bed right after I was done (9 o'clock!) and am still exhausted, even two days later. It was a grueling and extremely tiring day. All I gotta say is I better do something really fun/have a big celebration when I get into college (because I'm determined that I WILL get into a school that I love and want to attend) because it's been a heck of a lot of work already!

   Secondly, my port surgery is tomorrow morning. I'm getting more and more nervous (especially tonight with tonight being the night before) but I'm ready to have it done and over with. We talked to my anesthesiologist tonight to get my questions answered and then have questions for the surgeon tomorrow. We're the first surgery tomorrow, so that's nice as I can get it over with and we don't have to risk anything running behind schedule. I'm anxious to see how it looks once it's in and I'm hopeful that my body accepts the port and doesn't reject it. If you could please pray for me tomorrow for the things I mentioned in my last post, that would be awesome. Please especially pray at 9:30, as that is when my surgery is scheduled to begin.

   As I showered tonight, I passed out twice. However, I was determined to finish my shower because this is the last time I'll be able to bathe myself for the next week to two weeks as we'll have to keep the port site dry in order to let it heal. I looked down at my stomach and thought to myself "this is the last time my stomach will ever look like this for the rest of my life" and began to tear up. However, I'm clinging to the truth that beauty is not measured by outward appearance, and I refused to be defined by a port or a scar or an illness. It brings me much comfort thinking about all the possibilities the port may open up and the freedom it may bring me.

  Lastly, my sweet best friend Marissa has ordered blue rubber wristbands with white writing that say "Today I choose Joy" on one side of the outside and "Hope for Ash" with an anchor on the other side to sell to fund raise money to off set my medical bills. (God has truly blessed me with an awesome, mature, giving, compassionate and selfless best friend in her!) They will be $4 and should be in sometime next week. Once they're in, I'll let ya'll know and give you a way to contact her if you're interested.

   Thank you again for the continued support and prayers, please pray extra hard tomorrow morning as I undergo my surgery beginning at 9:30.

"I don't know what the future holds, but I know Who holds my future."

ten blade

   Well, we were praying for an option, and now we have one. On Wednesday morning I will be having surgery to get a port implanted on the right side of my chest.

  We had somewhat discussed the possibility of a port with my doctor in the past, but we thought this was something that maybe we would encounter in the future. However, with my health in the state that it is and not getting any better, we are now making this step earlier than we had planned, or rather really planned at all. Meriam-Webster defines a port as "a small medical device (as of plastic or titanium) that is implanted below the skin, is attached to a catheter typically inserted into a blood vessel, and has a small opening through which a needle can be inserted to administer fluids or drugs or withdraw blood". It's inserted near your heart so this way you can access your body through the port rather than getting the traditional "needle stick to the arm".

  Why am I getting a port now? Well for one as I've talked about previously, I'm running out of veins. You have to give veins an adequate amount of time to recover after using them for something (IV, blood drawn, etc.) and with my veins already being difficult, we're having a hard time finding veins to use. It's dangerous to leave an IV in for more than three days in the same spot, much less almost two weeks. However, currently I cannot walk without an IV and even with one I'm not fully functional. The port will allow me to have IV's more often and for it to be safer without us worrying about damaging my already difficult to find and difficult to use veins, or worry about the risk of blood clots. Also, the next treatment options that we may be looking at all require me to have a port inserted at some point, essentially. So, if I will need one eventually the hope is by inserting it now we can start treatment sooner.

  One of the downsides of getting the port is that I'll have a metal object in me for up to ten years. (Ports can be removed sooner than that if they are no longer needed, but can remain in for up to ten years.) It's scary to think that after Wednesday my body will never look the same. Thankfully, Dr. Patel is having them implant the port under my left breast (around the rib cage) so that it won't be as visible on an every day basis. (If you google pictures of ports, you'll see the majority of them on people's breast/chest. Mine will still look like that, just won't be in the same spot.) The hope is that by the time I get my port removed (and hopefully will not need another one) I will have developed more and my scar will no longer be visible. However, for the time being I will have a metal piece inside me, and that blows my mind to think about. The only times others should clearly see it are when I'm in a swimsuit, have a low back top on or a dress with cut outs, but I'm interested to see how different fabrics look on top of it, as I'll most likely have to avoid clingy fabrics for the time being if I don't want people seeing it.

  I would say I have an okay self esteem (you learn to care less about what people think of your appearance when you're in a wheelchair with an catheter in your arm carrying an IV pump around town) but at the end of the day I'm human, a 16 year old girl, nonetheless, so of course people's opinion of me is something that I'm thinking about. Also, it's going to be weird looking at my own side and seeing something inside of me for the next few years. There's also the scar, which I'll have for my lifetime, visible or not, and it's scary thinking that the decision to have this surgery at 16 is going to affect the way my body looks for the rest of my life.

  I'll have a small incision made in my neck (for them to put the tubing in) and then the cut for the catheter. My mom will have to bathe me for a while longer, as I can't get the area wet for a while until it's finished healing. I'll be bruised, swollen and in pain after surgery, but hopefully that won't last longer than a week. Once the site is healed, I can swim and shower with the port inside of me (not while I'm hooked up to a pump or tubing, but all other times), so I'm looking forward to having that increased independence. It's weird to think about that when I remove my catheter from my right arm Saturday that this could be the last arm IV I have for ten years!

 The surgery isn't a major surgery, I will be put under, but it is an outpatient procedure that should take about a hour, and I should be able to go home by the end of the day. (Ports aren't necessarily rare either, most likely anyone you know who has had cancer has had a port.) It may not be major, but this surgery will be tough on me just because my body is so weak and unhealthy. Also, in the past I have had a hard time recovering from being put under full anesthesia.

   So, how can you pray for me as this new adventure draws closer? Pray that the Lord covers me with peace. I don't usually get scared about much when it comes to my health care, I'm pretty fearless, but I'm scared, and it's scary to me that I am scared. Pray that the doctor's are blessed with His wisdom and able to do their job to the best of their ability. Pray that the site doesn't get infected and they're able to get a good connection to my heart. Pray that the Lord covers my parents with comfort, it can't be a good feeling waiting in the waiting room of a hospital while your child is in surgery. Pray that I make a quick and low pain recovery. Pray that the port is helpful and by getting the port implanted we're able to try some new things that will hopefully make me feel better.  Pray that I'm reminded that my true beauty is found inward, and it doesn't matter that I have a piece of metal protruding from my side. Above all, please pray for a safe and successful operation.

  I'm well aware that this post isn't my best work, and I apologize for that, (I didn't sleep a single minute last night and have been horribly, painfully achy all day-thanks for another drastic weather change Texas) but I just wanted everyone to be aware of the next (big) step in my journey. Thank you to everyone who has prayed and will continue to pray over me in our continued quest for me to be healthy once again.

"O Lord, be gracious to us; we long for You. Be our strength every morning, our salvation in time of distress." -Isaiah 33:2

two years later

   Today marks two years of mystery, fear, frustration, tears and life change. On this day two years ago, I became extremely sick and we didn't know what was wrong. It was scary and worrisome. January 21st, 2012 will forever be a milestone in my life long journey with a chronic illness.

  Whereas March 21st, 2012 is also an important day (that's the day I was diagnosed), it stands for completely different things-it was the start of the battle with an illness but it also brought hope of finally knowing what was wrong. Today stands for a more accurate representation of what my life actually is and feels like-uncertainty, sadness, loneliness and above all: change. It's been a rough day emotionally and what a more fitting way to spend it then all day at the doctor's. However, my friends (as always) were a source of constant encouragement through out this particularly tough day and my family (as always) did the best to bring a smile to my face . My mommy got me my favorite Panera salad for lunch (chicken bacon avocado with blue cheese and hard boiled egg on the side. you have to try it), baked my "safe" favorite chocolate chip cookies (I have a major sweet tooth) and my family and I went out to Aspen Leaf (my favorite fro yo place) tonight for desert.

  It used to be that the 21st for me was hard, as just so many things have happened on the 21st, but now it's mostly just January 21st (the date I first became terribly sick), February 21st (the date I went gluten and dairy free) and March 21st (the date I was diagnosed) that give me the most trouble. I've been working over the past two years on making the 21st of each month less of a hard day (trying to tell myself "it's just another day") and I've been somewhat successful, but I think that those three dates will always be especially tough days for me as they symbolize major change in my life.

  When I think about the fact it's been two years, it's rather shocking to think it's only been that short amount of time. You may think, "two years oh that's not that long" but to me it feels like twenty years. When most everything you once knew is no longer a part of your life and you live through days that seem like endless hell, 730 days (and counting) is a long way to live in that state. I know there's an end in sight, but I just don't know when that end is. That makes it very difficult to fight and stay happy each day when you're unaware how many more days you're going to have to live in this condition.

  I've had a very tough past three months, one of my toughest stretches since I first became sick. I've had eight IV's, countless tubes of blood drawn and new problems have arose. My IV that I've had in since last Wednesday is still in and is remaining in through Saturday (which isn't particularly safe, but I'm being very cautious and my parents, doctor, nurses and I are monitoring the site closely) because I am still passing out, despite receiving fluids and steroids for over two weeks now. If I'm still not doing well with the IV in now, it's fairly scary to think of what kind of shape I'll be in once it's removed. We went into my appointment thinking he was going to remove it as the catheter had already been in for over it's limit so I was overjoyed when he told me I could keep it in for a few more days (my mom said she never thought she would she her daughter so excited to keep an IV in). Because at this point, I'm just willing/wanting to get better, and this seems to be one of the very few things that works, as troublesome as it may be.

  One of the problems with passing out so much is with staying in bed so much and crawling or being carried from place to place, your body starts to deteriorate and your legs begin to atrophy. I've been doing yoga each night (sitting down or laying down poses) in an effort to keep my body in some sort of shape (and to make myself feel better) but nothing is as good for my legs as actually walking.  (Before this decline, I was able to walk around my neighborhood at a fairly steady pace for a half hour, to give you a reference.) I wasn't able to walk anywhere but down the hall to the bathroom and down the hall further to my parent's room until Sunday afternoon. Now, I'm able to walk from the front door to the car when needing to go to doctor's appointments, so that's an improvement. However, one of my biggest challenges is the fact that our house is a two story and my bedroom (as well as the rest of the bedroom's) are upstairs. The stairs are a constant drain of energy. (Extreme Makeover: Home Edition one story handicap accessible house where you at?) When my dad isn't home and able to carry me up and down the stairs (God bless him) I have to crawl. Now I'm only passing out around two times each time I go down/two times each time I go up (better than passing out every other step), but that's still not good and it's an annoyance. I know eventually I'll need to be able to stand and do the stairs in my house to be functional and independent, but they're currently a hindrance.

   The latest set of problems I've been having the past three months are stomach issues and indigestion. (Those were the two out of the 20 POTS symptoms I didn't have when I first started getting sick two years ago so go ahead and congratulate me, your girl now has all 20!!!) Currently, I've been experiencing almost daily nausea (yay for nights where I sleep in the bathroom), vomiting, days where I can only keep down liquids (God bless Starbucks smoothies and Jamba Juice), and stomach pain where I feel like dozens of knives are being stabbed into my stomach and twisting and turning leaving me in excruciating pain, indigestion and restroom issues, among other things. We're going to a POTS GI doctor (My best friend Hailey goes to her and recommended I go to her) to figure out what's wrong, but we were unable to get an appointment until late April. We're trying to see if Patel can have some influence in getting us in sooner, but she's a busy woman so I don't think we'll be able to, honestly. In the mean time, we're doing a stomach work up so by the time we get to her, hopefully a lot of the tests she wants to run will have already been done and we won't have to wait for tests to be run/get results, we can go straight to treatment. However, April seems a long ways away to live with constant stomach issues daily.

   The past three months have been extremely difficult and in all honesty, physically/mentally/emotionally I don' t think I can do another three months like this. I've gotten to the point where I'm too tired to even cry, how sad is that. Nothing makes me happy anymore, nothing makes me smile anymore, nothing makes me laugh anymore and nothing even sounds like fun. I don't feel pretty, worth it or smart. (I'm not suicidal nor have I ever thought about harming myself, don't worry about that.) This is the most depressed I've been in a while, and I know a large reason why is because I've been feeling absolutely awful and spending so much time in my house, simply because I don't have the energy to get up and go anywhere. Your mental health and physical health and emotional health are very closely related, and it's very hard to have all three poor and fight all three bad at the same time. I'm having a difficult time focusing on things such as studying for my SAT (which I take for the first official time Sunday, please say prayers), history or even making plans for prom because at this point in my life I feel as if there's much more important things to think about and focus on-how does my IV site look? Did I take my afternoon meds? When will my next fluid bag need to be changed? Very rarely do I feel like a teenager and I haven't felt even relatively close to one in a very long time. My teenage years are flying by me as I sit here planning my life around my next doctor's appointment or my next tutoring session. It's no way to live your life, especially what are supposedly supposed to be some of the "best years of your life."

  Options are getting slim, risky, expensive and dangerous; it's a tough spot to be in. I feel as if we have almost stumped Dr. Patel, which is saying something because he is without a doubt one of the smartest people, if not the smartest person I have ever met. Please pray and hope that he is able to come up with something soon, because I really don't know if I can do another three months of this, like I mentioned above. It's very hard also on my family and friends to see me like this as well.

  I'm sorry for such a long and feeling-filled post, but emotionally I just haven't been able to blog lately. I can't particularly describe it, but between the mix of low self esteem, brain fog and depression I couldn't get myself to type something. It's also very difficult to type/write (or do anything for that matter) when you have an IV in your dominant elbow, but I thought I was getting it out today (which I didn't, remember) and I had said I would blog tonight and I knew it would make me feel better, so I powered through it and followed through. Thank you all for keeping up with me and my journey and thank you everyone who encouraged me not only today, but who encourages me every day. It's been an emotional day and I really am very happy it's over. I'm ready to snuggle with my puppy and watch Netflix and go to bed, I'm worn. It really is hard to believe that it's only been two years. What a journey it's been and what a adventurous, difficult journey I'm embarking on and still have ahead of me.

"Trust in the Lord with all your heart and lean not on your own understanding;" -Proverbs 3:5

poke poke

  Today, I got my 4th IV in the past two months. That is the most IV's I've had in a time period in my life. You can't have an IV in a vein outpatient (Which is what we do, I get the  IV inserted at Dr. Patel's office, my parents change the bags and I carry the bag of fluid and my pump around with me in a backpack, it is pretty cool if you think about it.) for more than five days (fear of blood clots getting to your heart) and you can't do outpatient IV's for more than ten-fourteen days (fear of several key blood and vitamin levels dropping, you can have an IV in for longer if you're in a hospital because they can monitor you around the clock.). Because of this, today when the nurses were looking veins to insert an IV into they were having trouble locating a vein (you have to give veins a certain amount of time to heal-this is one of the reasons why people who are receiving chemo or other intense medical situations end up needing a port. Also, it doesn't help that my veins are difficult to find and are often hidden under tendons. After the entry needle poke, the nurse often has to wiggle the needle around several times-which is very painful-before they can get a solid blood return.

  If you've never had an IV before, consider yourself lucky. (Pain level also depends on where the vein they choose to use is located, how much they have to wiggle and if they have to try several times or not to get a return.) They are worse than most shots or getting blood drawn, the only things that have come close to the same pain level as the IV is a large shot I receive every three months (will talk about that in a later post) and allergy testing (having 81 needles inserted into my back was one of the worst experiences of my life). Getting blood drawn multiple times a month or getting a weekly shot doesn't even bother me now, which is saying something considering fibromyalgia and chronic pain make everything hurt even more. (Also, when I was in 4th grade I ran away and hid from my parents in a grocery store because I didn't want to get my flu shot-I guess you could say I've toughened up some!) IV's are something I've always dreaded yet today I realized they don't phase or scare me as much as they used to. Yes, I did still cry and scream today during the insertion but that's coming a long ways from the girl who ran away from her flu shot.

  What's my secret you may ask? Whenever I have a needle near me, a test run or a procedure being done I like to hold one of my parent's hands (call me a baby), close my eyes until it's over, and repeat out loud (weird, I know) "I can do all things through Christ who strengthens me". In addition, I've found my doctor is the best at getting the line started (many years of experience helps) and I have a favorite nurse I request (she does my large shot as well). Also, the farther I've gone into my POTS journey, the more invasive, intense and painful the treatment options have gotten (the emotional affects of that is a post to come). I've realized if I want to have any chance at getting any better I'm going to have to toughen up (even more) and do things I have no desire to do-for the sake and the hope of getting better.

    Since my hand and forearm veins had been used lately or they weren't good veins, my current IV is in my left elbow. You have to be extremely cautious with any IV, but the problem with elbow IV's is that in order to keep your catheter from falling out, (meaning the catheter falls out of your vein, you have to remove that catheter and get a new IV) you can't bend or move your arm, therefore you're down to essentially one arm. You know the cliche saying, "you never know what you have until it's gone"? Well, you never know how hard it is to live life with one arm until you only have one arm. (The multiple times I have been in this circumstance has given me even more respect for people like Bethany Hamilton who truly do have to live life with only one arm, and not just for two weeks, but for their entire life.) Things such as putting my hair in a ponytail, eating, using my phone, changing my shirt, typing this blog, doing homework or even bathing (my mom has to bathe me for two weeks while I have the IV in because you can't get the site wet-talk about humbling and feeling like you're losing your independence) all require assistance and are a huge chore. IV's have taught me to be thankful for my functioning and able limbs, they're definitely something I take for granted each day.

  If they're so much trouble, cause so much pain and inconvenience and are expensive why do I continue to get them? Well IV's are the only thing that has worked in the past when I'm in a state as bad as I am in now. I haven't walked since Monday and not only does that making getting around my house difficult, (crawling to the bathroom and having your dad carry you up & down the stairs in your house is no way to live) it affects me mentally and emotionally as well. When I have rough patches like this, I'm unable to get out of the house (unless it's to go to the doctor which is a HUGE task/challenge)  and I also get lonely because I'm trapped in my house so the only way I can see my friends is if they come over to see me, which is not always convenient for them or what they would like to do. (How to be a good friend to someone with a chronic illness is a post already in the works.)

  With my IV now giving me fluids, hopefully I'll get a quality good nights sleep (which I haven't had in forever), am able to take a few steps tomorrow, get some school work done and have a better day tomorrow. Maybe if I'm lucky I could even get out of the house?! How awesome that would be...

Prayers are always gladly welcomed and kind thoughts and sweet actions are appreciated.

tomorrow will be better...right?

Today was a bad day.

   I hadn't had the best weekend health wise and weather changes severely affect people with POTS (With weather changes, when the pressure is changed that is more than enough to set off our symptoms) and here in Texas we had a 50 degree weather change last night (and it's going back up 50 degrees Wednesday night, Lord help me) so I have not been doing well the last few hours. Last night I threw up a large amount and continued to feel extremely nauseous (sorry, POTS is gross, I know) so I ended up cramming myself into our tiny bathroom and laying on the floor for five hours waiting for it to pass. By the time I got back to my bed, it was 5:30. I was exhausted & my back hurt from lying on the cold tile floor. I fell asleep (thankfully) until my mom woke me up at 1 for tutoring (Today I returned to my homebound schooling routine after a wonderful and relaxing two week break...not too happy about that). I passed out trying to change shirts & lasted less than 20 minutes in tutoring. All in all, I passed out a dozen times today, had more than a half dozen episodes and continued to feel sick to my stomach. It was a bad day.

   On days like this where I'm unable to get out of bed, I just want it to be over. Not just the bad day, but POTS is general. POTS has affected me in more ways than I count. It's on days like this I tell myself "today will be better" but really, will it be better? After a series of bad days you really start to question yourself, will it really get better? It's been almost two years yet it feels like 20 years. The days drag on, time is slow. With my senior year only a semester away, everyone continues to talk about how "time is flying by". For me, the time before I became chronically ill seems a long ways away and it seems as if those years flew by. However. since then the days keep dragging on and I keep looking forward to better days. It's really hard to "enjoy the moment" when so many of the moments suck.

   The "light at the end of the tunnel" is the hope that I'll grow out of POTS in my late 20's (that is a possibility, not a for sure thing and regardless I'll have some symptoms for the rest of my life) and when I got diagnosed I kept hearing "oh just 12 more years or so and it will all be over!" That may not seem like a lot of time to you and in the grand scheme of my life maybe it's not, but when those 12 years are 12 years of hell 12 years seems like a long time away. When all you're wishing for is for that day to approach where your healthy and can live a normal life (whatever normal is) is 12 (now ten) years away that's a crazy long period of time. With my two year anniversary coming up, two years may have gone by but that means only 1/6th of the pain and suffering is gone. The light at the end of the tunnel is there, it just seems distant.

   I really do consider myself to be a positive person and in general I do have a positive attitude, but everyone is entitled to bad days. However, my bad days are more numerous than the average person and generally seem to be worse than the typical high school student's "bad day". I know it could always be worse, but thinking "someone always has it worse" is like thinking "someone always will be happier than me". The struggle with my journey is I know God has a plan and I know He's working in my life and I truly do believe in His perfect timing, it's just hard to see what that looks like when I have so many days like the kind of day I had today.
 
   What I just shared is an opening of my heart and emotions. I really do try to be positive on other social networks (not once today did I post anything on Twitter, Instagram or Facebook about today being hard) but this blog is where I'm going to outlet my feelings. I may smile on the outside but on the inside I'm breaking and in pain. This blog is a place for me to share what's really going on in my life and with my health battle and give ya'll an insight to my internal thoughts.

  To close on an ending note, I'm going to share the words that currently grace the lock screen on my phone (read it from God's perspective):

"I'm here.

I love you.

I don't care if you need to stay up crying with you all night long, I will stay with you. There's nothing you can ever do to lose My love. I will protect you until you die, and after you death I will still protect you. I am stronger than depression and I am braver than loneliness

and nothing will

ever exhaust Me."

I hope that encouraged ya'll, thanks again for reading and your words of support, it really does mean a lot. Here's to a better tomorrow..