more to come

   Today has been a long, tiring, exhausting day so this is all the energy I have to write tonight. I will try to give you the full story & update ya'll more once I'm feeling well enough to do so. 

   I had my port accessed for the first time today and am now on IV fluids & medication. Starting tomorrow through Sunday I will be taking a section of the ACT each day. Please pray for me to stay strong, as I am taking this test in severe pain, with an IV in & in a fragile state. Pray that I see the bigger picture-that the first time for me taking it is just to get an idea of the test-rather than focusing on getting a perfect score. Please pray for me as I am exhausted and sad. Thank you. 

"The Lord gives strength to His people, He blesses His people with peace." -Psalm 29:11

not what we had in mind

  Hello everyone! I'm back, sorry for the wait. The past few weeks have been a struggle since the surgery, and it's a struggle to even be typing this. It's been a while (almost a month) so I'm going to do my best to update you not only on what's been going on medically but emotionally as well.

  Surgery (which was January 29th) went well. All of my doctors, nurses and techs were very nice. I was nervous, but both my parents were there and that was a big help to have them there comfort me. Surgery happened a hour later than scheduled, but went smoothly. I have been watching Grey's Anatomy the past few months on Netflix (I like it because it makes hospitals seem more exciting than they actually are) so it was kinda cool to see my name on the OR board and such. I thought that the actual surgery would be the worst part but boy was I wrong.

  I woke up after the surgery and the first words out of my mouth were "ouch". No more than a few seconds later, I was bawling. I woke up in major pain and haven't not been in pain since I woke up post surgery. They called my parents shortly after I woke up and then began pushing pain meds through my IV to see if they would help. They tried two lower level pain meds before they tried morphine, and the morphine still did nothing-I was in exrucating pain. My legs also hurt & I was unable to move them. My face was extremely itchy yet it hurt too bad to lift my arms so I couldn't even itch my face. Shoutout to my sweet mama who itched my face whenever I asked her too. My throat was dry and hurt any time I tried to talk due to the intibation tube I had had stuck down my throat during surgery. After a hour or so in the post op recovery and a chest x-ray to make sure the port was implanted correctly, with no serious complications, we were told it was time to go home. (We had to be at the hospital at 6 and left the hospital around 4:30, if this gives you some sort of time table.)

  I was in too much pain to change back into the clothes I had came into the hospital with on, so I stayed in my hospital gown. As my parents helped me get out of bed and into the wheelchair, I screamed louder than I had before-it hurt SO bad. I can't even express how bad it hurt and it makes me cringe just thinking about it. Next, I was wheeled out to our car. I had to curl up into a ball so it would hurt less but it still hurt and I sobbed the whole time. Every bump to get into the elevator, or door entry, or crack in the tile or brick pavement hurt  my side even more. Getting into the car was another painful challenge, as was driving home. Every pot hole, every speed bump, every curve, every stop-hurt.

  Once we were home, the next challenge was getting me into my bed. Once we had gotten me from the car to the stairs inside our house in my wheelchair (anytime we have to use the wheelchair in our house its a difficult task-our house is not handi cap asscesiable) we had to make a plan to get me up the stairs (I loathe those stairs I hate them I hate them I hate them) without putting me in more pain than I already was. Normally my dad would just carry me up the stairs, but in this instance doing so would press my incisions against my dad's back make me hurt more so that wasn't option. What we decided on was for me to sit in a chair and my parents to carry me up the stairs and to my room in the chair. Both my parents have bad backs and I could tell from the looks on their faces that doing this wasn't an easy task, but at last we were in my bed.

  I was hungry as I hadn't been able to eat or drink anything since midnight the night before. While I ate pasta with butter (only certain foods for the first two days) my mom went to get my pain meds. I was thankful to have them but they only took the pain down half a point. (Often at hospitals they'll ask you to rate your pain on a 1-10 scale with 1 being no pain and 10 being the worst pain of your life.) After I ate and took my meds, I knocked out until the next morning. I was exhausted. A big thank you to all of you who helped me and my family on the difficult day of the surgery-from people taking the boys to and from school, to a friend bringing my parents lunch at the hospital, to the three (yes three!) dinners we had brought to us that night and the countless text messages, tweets, Instagram posts and comments, Facebook status comments (I still haven't finished getting back to everyone who contacted me, I promise I will in time!) to the endless prayers, we couldn't have gotten through that tough day without the wonderful community we are blessed with. Thank you.

  You should be able to return to a full school schedule on Monday, they said. Your pain level will dramatically decrease after a week, they said. It's a minor surgery it's no big deal, they said. The recovery is nothing, they said. None of those statements held true for me. Even with the surgery being almost a month ago, I am still in extreme pain. I wasn't able to do a normal school schedule for three and a half weeks. I couldn't lift my left arm at all until this week and still I'm only able to lift it thigh level. I've spent almost every minute of the past month in bed, as any change in movement causes more pain. I'm not able to walk straight, I'm up to probably 75 degrees which I suppose is an improvement from the 45 degree angle I was walking at when the first week-I seriously looked like a grandma. I still have to have one of my parents assist me whenever I want to walk anywhere and have help in the bathroom. Once I was able to bathe, it was one of the most exhausting and painful activities I have done to date, even with my mom bathing me and her working swiftly. I need help reaching most of the items in my room and for three weeks my parents had to put my pills in my mouth for me. Since the port is next to my lung, it hurts to breathe deeply, talk loudly, cough, laugh or scream. It's still difficult to move and painful to change clothes and up until this past weekend I had just worn hospital gowns. (We washed them-don't worry.) Even now, I just wear my pajama's-regular clothes are too much.

  The incision sites look great, are healing well and my body didn't reject the port-praise Him! It was swollen and bruised at first-I didn't look at it for the first two weeks because I was scared of what it would look like. Since the two week mark, I check it often and while it looks strange it doesn't look terrible. I'm nervous about prom dress shopping with how it'll look under certain fabrics but am trying to stay positive that I'll find a dress that I love and feel confident in. Swim suit season will be a big test of my self esteem with the port, as it'll be fully visible but we'll cross that bridge when we get there. More than anything, I'm happy the port is in and the incisions are healing well.

  Although a few offered, I didn't want to see any of my friends for the first two weeks post op-I was that miserable and in that much pain. If that doesn't tell you how bad I was feeling then I don't know what does. I only texted my closest circle for the first two weeks (and still texted them sparingly) because I didn't have the energy to talk to any one else. I wasn't on any social network for two weeks, I was simply sleeping all the time and didn't have the desire to do so. I've slowly been getting back into being in contact with the world around me but am still not at full strength.

  For some crazy reason (God's grace & the blessing of the Olympics being on-I'm Olympic obsessed!) I really wasn't depressed at all, despite spending three straight weeks in the upstairs of my house with few visitors and in crazy amounts of pain. The depression didn't hit me until three weeks post op, but it hit hard. I've missed out on several social opportunities and fun things to do with my friends. Prom is approaching and I'm unable to go anywhere to dress shop. I haven't seen many of my friends (which I don't completely place all the blame on them I mean what teenager wants to spend their Friday night with me laying in bed doing nothing? Oh and only in hour intervals because I get too tired if anyone stays longer than that...) but regardless I miss my friends. We tried multiple pain meds but the only one that has worked is morphine. I'm semi-functional on morphine (despite the drowsiness it causes me) but the problem with morphine is that it's addictive. What am I supposed to do when the no refill prescription runs out? I'm terrified of how awful the withdrawls are going to be. Also. tonight in between doses I had to go to the bathroom and I was in tremendous pain walking there and back-crying and screaming as much as I could without the port site hurting even more. Am I going to be in that much pain when I run out of morphine? Something isn't right. I'm tired of waiting to get better. There's no hope, no cure, no solution and just talking about that almost makes me break down to tears. I'm tired of my illness ruining my life and running my life, I want to live my life the want I want to-not the way my illness makes me.

  The one time I got out of the house in the last month was on February 15th to go to the ER (fits my life pretty perfectly don't you think?). I had had blood in my urine Friday night & Saturday morning and since it was the weekend and he wasn't in office, Dr. Patel wanted us to go to the ER to make sure it wasn't anything serious. Getting there was a mess and horrifying and painful and not fun but we did it, by some small miracle. We really don't like going to the ER because since they not educated on what my condition is whatsoever (when we tell them what I have it's the first they hear of it) they rule out that I'm not dying, then tell me I'm either constipated or crazy and send me home. Back to the 15th, after several hours of testing, they decided it was nothing serious or life threatening. Besides making sure I wasn't dying, it felt like a total waste of time, money and my precious energy. I was starting to make some small amounts of improvement but going to the ER set me back a week, which was very frustrating. While I was there, they wanted to draw blood for tests and start fluids so I said "oh great! You can just access my port." But no. The doctor said that some of the tests she was running the blood couldn't be drawn from a port, they had to do a regular IV (by some miracle they found a vein, probably because I hadn't had an IV since the surgery).  But I was pretty darn iirritated, wasn't one of the perks of getting an IV is that I wouldn't have to get any more IV's?! Oh well.

  Since the surgery, my stomach problems have continued. I can only eat a fruit bar for a breakfast, then a small lunch (think half a piece of ham, handful of green beans, handful of carrots)  and then a smoothie for dinner without throwing up. I know that's not enough nutrition, but if I eat anymore I'll throw it up. I'm also limited as to what foods I eat (as if being gluten free and dairy free wasn't enough) as certain foods agitate my stomach more than others. Besides the port pain, the stomach pain has also continued as well as other stomach issues. We think that these issues along with the reasons for my last two ER visits-something is wrong with my insides. Sadly, we still have two months longer to wait until we can get into the pediatric GI doctor. My mom tried to get me into my parents GI doctor but they only see adults. You would think being in the 7th largest city there would be more pediatric specialists, but no. This appointment can't come soon enough. What I'm dealing with is enough I really don't need stomach issues on top of it.

  What's coming up you may ask? Well this week we're going to the doctor to get my port flushed for the first time (ports must be flushed monthly to keep the vein open and check the blood flow) and I'm also going to take the ACT. (yes, I can't even get out of bed but I'm going to take the ACT this week...what) I'll try (try) to post about those things this week. My two year gluten free and dairy free anniversary was Friday so I'm hoping to do a post about that soon-the challenges of being gluten dairy free, things I've discovered that make being gluten dairy free easier, as well as how to be a good friend to someone with dietary restrictions. Also, the fundraiser support bracelets that my best friend Marissa ordered are in and they look great! She's selling them for $4. If you're interested in one, either contact her or me or any of my family members and we can get you in touch with her. Thanks for sticking with me, being patient and continuing to pray!

"The Lord is good, a strong refuge when trouble comes. He is close to those who trust in Him." -Nahum 1:7

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..