Mourning my plans...but embracing His

So of course 10 minutes ago I had an idea of what I was going to blog about and it was going to be profound and amazing, but of course one of my stupid symptoms of one of my stupid illnesses is that I have memory loss. Lots of memory loss. At this point I can't decide if the memory loss, the weight gain, the pain, the headaches, the heat intolerance, or the other random myriad of symptoms are worse. I'm thinking it's the memory loss, right now, for this second. I don't know if it's because I failed 2 easy midterms this week that I studied my butt off and knew all the answers to an hour before the test, or if it's because I spent an hour with an older couple today and one of them has Alzheimer's and wondering if my baby piddly memory loss will ever get to that point. Maybe it's because I used to pride myself on my memory, you could count on me to remember anything and everything. If I dialed a phone number once it was locked in forever...now I don't even know my own home phone number. Now I don't know where my keys are unless I put them where they belong. Today I had to call my mom who is in LA to tell me how to get to Verizon because I drove by it three times and couldn't find it. Yeah. True story. So today the symptom that is the most annoying and whatever is memory loss.

Most of the time it is weight gain or pain. I mean in September of last year I was almost dead I was so malnourished and weighed 99 pounds. Today I've been steadily gaining 1-2 pounds a day for the past 3 or 4 months and I know weigh over 200 pounds. We tried everything to get me to gain weight and now I can't stop. That is really annoying. Now I have to lose about 50 pounds to be where I'm supposed to be. How ironic. The pain has become such a constant that I don't even pay attention to it anymore. It's just like breathing to me now. Just worse. The passing out or almost passing out (pre-syncope as the doctors call it) is just rather annoying. Your like fine one second, the next you are lying flat on the cold floor so you don't pass out. Or you are fine one moment and then you have to sit down so you don't pass out. Or, my personal favorite, you are fine one moment then you wake up anywhere from 5 minutes to 2.5 hours later having no idea what just happened and hope you don't have a head injury from the actual passing out. These are all the negative things though. Well, not all of them. I don't want to overwhelm you to much.

Now, let me let you in on a not so secret, secret. I'm a type A personality. Shocker, right? I've had my whole life planned out since I was about 4. And it was going right on don that path perfectly. Found a guy I loved and wanted to marry in high school (but also found out in high school that he wasn't the guy for me, though I'm sure he is wonderful for his now wife),graduated from college with .02 points away from honors (haha), always knew I wanted to be a teacher, became a teacher, was independent, found friends, found a church, found myself, got sick and almost died and was told there isn't a cure. Oh wait, that last one wasn't in there, was it? It seems all of us type A personalities get these wonderful things thrown at us that we have absolutely no control over, in my opinion for God to see if we can put our trust in Him and pass control over to Him. I've learned in all of this that I am super bad at that, like way bad. Like the worst at it ever. Ironically, most of my friends frequently complement me on my ability to take it all in stride, laugh it off, go with the flow, etc. However; they don't realize the constant dialogue that is going on in my head that goes a little something like this, "ok God, it's a new day, I could be cured today, ya know if that would be cool with you". Or the little things I tell myself like I learned in class the other day that all the red blood cells in your body are replaced every 120 days and the lining of your digestive system is replaced every 3-5 days so if I eat perfectly and force myself to exercise for the next 3 months then I will be a whole new person and that means the disease won't be in my body anymore. But then I also remember the thing that our physiology professor tells us every day...nothing in biology is 100%. I've told him a little of my story (after I passed out in class, check that off the bucket list) and he said dang you got the full cocktail didn't you. And I just chuckle and say oh it's not so bad, when I'm really like in my head yeah and it sucks big time. There is no cure for autonomic dysfunction. There is stuff they can do to make you more comfortable, but there is no cure. There is no cure for colitis or fibromyalgia either. There is a cure for celiac disease being a gluten free diet, but that is probably the least of my problems at this point. So all that being said, I don't think I will be making big, huge, elaborate plans I can stick to any time soon. But I won't stop trying.

I am in several online support groups and follow some of their blogs. The best, funniest, most truthful one I've found is this one: www.bobisdysautonomia.com and she also has a Facebook page. Well, today on her Facebook page she posted this status

Before I became ill I had big plans. For a long time after my health declined I mourned those plans and was consumed by hopelessness. Now I realise that my old dreams were small and I am capable of much much more. The world is full of possibilities. The only difference is I have to step outside of the box and give myself permission to embrace those less familiar paths. A while back I made a conscious decision to change how I view my world. To not beat myself up when I get discouraged, because that's part of the ride, and you can't move forward by denying those moments. And to know that I wont get stuck there again because I made it out before. The world can be beautiful. The pain, the fear, the uncertainty, the slow break down of my body all serve to make the good moments shine even brighter. I just have to remember to appreciate that.

After I read that, especially after the crappy day dealing with doctors offices and politics and what not, I just sat at my computer and cried. Because for the past 2 weeks (summer is always harder for me) I realized that I have been doing nothing but mourning my plans. When I got sick, I mean when I realized I wasn't going to get better, I decided that I would be positive about this whole thing. And I've tried. But sometimes it gets to you, but I was bound and determined to make this God's battle and to have Him on my side all the time and realize that anything was possible because He was gonna be with me the whole time and hold me in the palm of His hand. That was His plan. But for the past 2 weeks, for whatever reason, I have forgotten that and I have gone back to mourning the loss of my plans. I have forgotten the world is full of possibilities, there are less familiar paths, and the world is inherently beautiful. I have also forgotten that I am capable of much, much more. So for the next two weeks my focus will be to get my focus back, pass my class, and at the end of the next two weeks I will get to check a whole lot of items off my bucket list. Because I will not let my illness beat me in 16 days. I will get in my car, I will drive and pick up my best friend I haven't seen in 2 years and we will go to Maine. We will eat more seafood than humanly possible, we will dance the night away (yes dance), we will tour wineries, go on nature hikes,we will ride rides at the boardwalk, and we will watch whales jump out of the ocean. And I will, with the help of God, for one week forget that I am sick. How is that for planning?

a myriad of thoughts...

I have been learning a lot about being someone with chronic illnesses here lately. This is going to be a very personal blog entry, if that may freak you out, do not read further, I really do this more for me than for you anyway :) Let me do like a top 10 list or whatever number I chose to stop at, then tell you a story you won't believe, then tell you some good news, ps this will obviously be a long post, but I promise to try and make it good :) Why am I giving you the run down? This is my blog, I can do whatever I like really...

So anyways...

The top _____ things you learn when you have chronic illnesses:

1. ALWAYS advocate for yourself...NEVER and I mean NEVER settle for a treatment, a death sentence, being told you will never be able to do "x" again and know that doctors are not God despite their belief that they are...they are humans, they make mistakes, they don't know everything. When they make mistakes stand up for yourself and infrom them they are dumb (but hopefully in a nice way)

2. Try to maintain a social life. Have a core group of friends, try to make sure that they understand that yes you do have limitations, but it is very nice to be invited to do things. Never promise to do said activities, but promise to try. Also, try to make sure that it means a lot for you to be invited even if they think you can't do it, because honestly we don't know what we can do on a certain day, how is someone else supposed to know what we are capable of on that day ahead of time.

3. Don't feel sorry for yourself. Yes it stinks, yes its hard, but you are not the worst off person in the world. There is someone that has it way way way worse than you do. Even though I have to literally repeat that in my head over and over all day long in my head to try and stay positive ;)

4. People don't matter. The people that look at a seemingly healthy looking 26 year old get out of her bright yellow sports car in the handicapped parking place don't matter. What matters is that you know that if you park in the non handicapped parking place to save face you will pass out before you get to the door of the store/restaurant/etc you are going into. (P.S. If there is a non handicapped space directly next to a handicapped space, I always take that space instead because again I know I am no where near the sickest person in the world, and someone sicker than me may need that space...but if the nearest space is halfway down the parking lot, heck ya I'm parking close...who wants to pick someone passed out up out of the parking lot, really)

5. Blogging really helps. I know I don't do it as much anymore...but it does help. It hurts to type like I've said before, and I honestly don't have the mental energy it takes to do it most of the time once I go to school and study. I barely have the energy to make it to the bed most of the days let alone blog. It helps to be able to type anything and everything to a cyberspace thing though...I know I know the people that read it, but it still feels safer than face to face contact.

6. Medicine sucks. I was never a medicine fan. I almost died because I didn't take my meds right, then almost died because I was taking the wrong meds. I gained 85 pounds in 4 months because of meds. But medicine also sometimes keeps you alive.

7. Have a support group. Whether it be a facebook group with people from across the world. A group of people you physically get together with. Or anything in between. Have a support system of people that actually deal with what you deal with. Not people who think they know how you feel. This will help you more than you can now. To be able to go and type on a support group page I feel this way and this way today and 15 people write back it makes you realize you are not alone, puts things in perspective, and helps you realize you are not crazy.

8. You are not crazy. Just because an idiotic doctor that doesn't know you thinks you need a therapist you do not need a therapist. He needs a therapist (P.S. the idiotic doctor may or may not be the story I'm referring to for later)

9. God created you. He knew you were going to be sick, He still loves you. He knew you could handle it. He knew you would be mad and upset and cry, but He knew that you, my friend, are an overcomer. The Bible says so. This is the verse I say over and over when I'm mad at my body.

"Oh yes, you shaped me first inside, then out; you formed me in my mother's womb. I thank you, High God—you're breathtaking! Body and soul, I am marvelously made! I worship in adoration—what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I'd even lived one day." Psalm 139:13-ff Message version

You thought I was gonna go to 10 didn't you...no I'm getting tired. Time for a story you won't believe...or maybe you will, then some good news.

So yesterday, I met the dumbest, most arrogant doctor ever. I thought I had a cyst so I had to go to this new gyn that I have NEVER met. He checks me out, is nice enough...then the tides turn. He is scrolling through his tablet and looking at my med list and my diagnoses and says hey, i know i don't know you really well, but i can i ask you a question. I'm like sure, he's like doesn't it suck to be 26 and be on disability? I'm all like sure but don't really have a choice...obviously the wrong choice of words on my part because then this happens. Dr.: "Well, I'm going to tell you a story. When I was 16 I had back pain and I went to 3 doctors. One told me I was going to be in pain for the rest of my life and on pain killers, one told me I could use a TENS machine to try and curb the pain, the 3rd told me I could do weight training and I would not have to be a slave to pain pills and treatments and be disabled for the rest of my life. Don't you feel useless? Don't you feel like you're wasting your life. If you would just exercise then you wouldn't have any pain and you wouldn't pass out anymore because you would be in shape. Also, it seems you've gained a lot of weight, exercising and eating right would help that too." (Not a real direct quote just to show you where he about stops talking) At this point in the story I am sitting there crying hysterically, shaking, and livid, and I'm sure my Blood pressure and heart rate are sky high which is the exact reason I got a 2 day stay at the hospital last week. I don't even know what to say. The only thing I can muster up is: Me: "Well, you obviously have never met me before in your life or know nothing about me. You obviously don't know that I spent the entire time the olympic track and field trials were on the tv watching them going that should have been me. You don't know I all but refused every medication that was ever given to me because I believe in natural medicine as much as possible until I almost died a couple of times from not taking my medications. You don't know that I miss teaching, I miss my life, I do not enjoy being 26 and laying in bed all day when I'm not at school because that is the only thing I can do right now. You don't know that I'm fighting my battles every day to become a dietitian and help people eat right and not get as sick as I did with my disease. You don't know that the reason I am overweight is because I gained 85 pounds in 4 months on a medication and since we quit it 1 week ago I've already lost almost 10 pounds. You don't know that I'm allowed to take up to 4 pain pills a day and most days I don't even take one, because I don't want to be addicted to drugs. You don't know me at all." At the end of this freak out and crying and still hysterically shaking...then he proceeds to say well I think you should see a therapist because I don't think you are dealing with your chronic illnesses very well. First of all, from the information given where am I not dealing well. Second, I'm only crying because you're an asshole...excuse my French. Then he goes, I don't know why you're so upset I was just trying to be sympathetic with you. Then I'm so upset I don't even read my visit summary until I get in my car and I'm looking over my diagnosis list and see that he has added obesity to my diagnosis list. First of all, according to the BMI, I am not obese. Second of all, how are you going to add a diagnosis without telling a patient. Third of all, did he not read when the nurse typed in the medication reaction I told him about or listen when I told him about the medication reaction. Obviously my weight problem is not because I eat 12 big macs a day, its from medication. Idiot. He was very far from giving me the sympathetic vibe...needless to say I will not be seeing him again and the director of the organization he works for will be getting a formal complaint from me. Just sayin. He was completely out of line and if he is a gyn he should be empathetic and nice and know how to deal with women who are hormonal and freak out when they're being harassed. Anyways...now to the good news.

When I quit my job I was fortunate and blessed enough to receive cobra health insurance. It was wonderful, I really needed insurance obviously and it was there. Well, now several months into no income to very little income I just couldn't afford it anymore, let alone the high copays it comes with and the medications I had to pay with. Most months I am spending more on health care than I receive for my disability and I'm leaving some things out that would help me stay better like vitamins and chiropractors and good for me food etc. Anyways, I finally took the plunge and applied for medicaid. I had my interview today for it and they told me I would definitely be approved. On July 18th I will have health insurance that I don't have to pay almost 500 dollars a month for which is over half of my disability check and doesn't even include meds or doctors visits. I am so, so blessed by this opportunity. I know that some people think that people like me living off the government are bad and it's not fair that you are paying our way and blah blah blah and I honestly felt that way on August 31st. I felt that way about 4 weeks ago actually. But there comes a time, when the cards are so stacked against you that you just cant swim anymore. And there are people like me (and hundreds and thousands of others) that do not abuse the system and aren't trying to do it for pleasure or anything. There is no way my healthcare could be afforded any longer based on my income. It was ridiculous. And I don't think that it is fair for my mother to have to continually shell out several hundred dollars a month to take care of her adult child's healthcare needs. I don't think its fair that this was the card I was dealt, but I am very glad the program is in place for people who truly need the support. To be clear, I also don't think it's fair that there are people that do take advantage of the system and abuse the system. I try not to do this as much as possible. So for now, yay for me. Yay for me finally being able to save some money, pay some forward, and try to become more self sufficient. Because as mom told me, we have to figure out a way for you to get ahead because I won't be here forever...but that's not something I need to think about right now hopefully. Anyways, so there goes the world's longest blogpost. Hope you enjoyed :)

Isn't it Funny

So while on a pinterest spree today I decided that I would pin like every C.S. Lewis quote I could find because I am madly in love with that man and his wisdom. I kind of started becoming obsessed with him when I was a senior in high school and struggling with Christianity and did my senior research paper on The Screwtape Letters, my obsession went full force in college with my religion degree and the advent of the Narnia movies. Anyways, all this to say, one of the quotes I found and pinned said this, "Isn't it funny how day by nothing changes, but when you look back everything is different..." This is how my life has felt lately. Somehow with the end of the semester of school and getting yet another diagnosis, the pain increasing every day, looking at pictures from my "old life" and looking at where I am now, etc, etc. I realize just how different things are, when really it all feels the same. But it all feels the same because even though it was gradual, it was sudden, but I've had time to get settled and into a "routine" as much as someone with chronic illnesses can have a routine anyway. I think the thing that has been upsetting me the most is that I'm constantly surrounded now (because I'm in college again) by people who are so active and free spirited and crazy and work out and I used to be that person and I took it so much for granted. If someone had told me when I was at track practice and complaining about running a few extra laps or doing a couple extra jump drills that in less than 10 years I wouldn't be able to walk more than 75 feet without either feeling like I was going to pass out or passing out before I thought about the feeling. If someone had told me that all the times I 'hurt' from the intense workouts I was doing or the running on the beach, that in less than 10 years I wouldn't be able to get out of bed without being in pain because simply standing up and putting pressure on my joints would be painful. If someone had told me that I would have to use a shower stool, a cane, a wheelchair, etc at the ripe old age of 26 I wouldn't have complained about standing up for an 8 hour shift at the Piggly Wiggly. I don't think I would have complained at all then, if I knew where I would be in 10 years. I think I would have realized how lucky I was and how grateful I should have been for being as healthy and active and blessed as I was. I was an athlete, and a good one. I had a job, I was in the band, I went to college, I could work (at one point I had 3 jobs on top of going to school). I graduated. I got a big girl job. I was still running, my knees hurt sometimes but I was still running 5, 6, 7 miles at a time...until 2 years ago. But they always say hindsight is twenty/twenty so right now it looks like a huge difference, but day by day, it isn't a big deal. Every day, I get up, I evaluate my pain level, I eat breakfast, I go to school, I sit there and get more in pain by the second because of the furniture, I finish up my last class, and come home and take a nap, eat dinner, watch some tv, and go to bed and do it again. Randomly there are dr's appointments thrown in there and they tell me thins that at this point just seem like words and no big deal. Every time I go to the doctor there is some new something so I know that's coming and it doesn't usually phase me. So yeah day by day it doesn't look any different, we tend to do the same or similar things every day, but when you look back it looks so different. Eight months ago, I was a teacher of special needs kids and I loved it...the next day I wasn't that was kind of an earth shattering blow...but two or three days later I was just back to day by day and not looking any different. Two or three weeks ago I 'only' had ulcerative colitis, celiac, fibromyalgia, and orthostatic hypertension. The next day, I had the diagnosis I had been "waiting for"...neurocardiogenic syncope or dysautonomia. I say I had been waiting for it because we had heard about it from several friends, researched it, and it fit me to a T...however, I am not one of those patients that is going to be known as a google doctor and read a whole bunch of information on the internet and walk in and demand a doctor test me for this disease so I can prove I am right. I do steer them in the right direction, but I don't force my uneducated beliefs on them. Anyways, basically all a diagnosis of NCS does is make my disability paperwork keep looking good because there is nothing they can do for it. I can be aware of it and try to fight off the passing out when I feel it coming on and they do have me on beta blockers now to try and stabilize my heart rate (it was going between 130 and 150 pretty much all the time which is way too high). But now it's back to day by day again. We get news and we adjust. We get a routine and we adjust. I have to adjust bigger than other sometimes, but I still adjust. Much of my life is mind over matter and God over human. I trust God and believe in the Spirit (especially after the study the small group is doing right now)and know that He would not give me anything that I cannot handle and He cannot help me through, so you just go back to day by day. I try to live my life as close to normal as possible while I can because I know that one day (probably sooner than later) I won't be able to get out of bed most days, now it's just occasionally. I am not the same as everyone else...I take lots of breaks, and when I look back my life is way more drastically different than most 26 year olds would be, but I still take it day by day like everyone else. And I bet, I laugh at myself way more than anyone else on the face of the planet does...because it is so much easier and takes way less energy to laugh than cry :)

Only the good die young...

Oddly enough, I've been planning the title of this blog and the content of this blog long before it was Billy Joel week on American Idol...guess God's just good like that.

Those of you that know me really well, know that for a 26 year old, I have known quite a few people who have left this Earth far too early...at least what their friends and family felt like was far too early...and is part of the reason why I fight these stupid diseases that ravage my body every day. When people on days like today, where you can look at me and tell there is no way I should be baking apple crisp in foods lab (I should at least be in bed and probably at the doctor or in the hospital), ask me over and over again why are you at school? Why don't you take a break? Why do you push yourself? It's because of my friends, my acquaintances, the people I've heard of that don't have the chance to fight, that don't have the chance to prove the doctors wrong, that don't have the chance any longer to show people what strength and beauty really looks like. It's because, for at least right now, any day that I wake up, is a day that God gifted me and gave purpose to me fulfill. I came across this quote on Pinterest that sums it up perfectly to me: "Having a rough morning? Place your hand over your heart. Feel that? That's called purpose, you're alive for a reason." So I get out of bed every day because I can, it may hurt, but it makes me a better person to realize that there are people much worse off than me, and that I have friends that didn't get to live to be 26, and it just doesn't seem fair to them, in my opinion.

So let me tell you about some of my friends...and I may have left some out...because I am having a pretty crumby health week(s) and part of that is not remembering everything I have to say/want to say...plus I'm sure this will be pretty emotional to right so I might get sidetracked or whatever...but anyways...I wanted to let you, my readers, know about the awesome people that I have had the pleasure of meeting, that have inspired me in my life, and that were too good so they had to die young.

The first young person that I knew that died was Todd Carter, he was 16, he died the week of my 16th birthday in a car wreck. He was the star football player for our gigantic high school football team, dating a head cheerleader, went to youth group. He wasn't wearing his seatbelt. I didn't really know Todd that well besides the fact that he was so popular and I wanted to be his friend so bad and he was always nice and he was in my youth group. But his death still hit me super hard, because we were/were soon to be 16, we were invincible. I was supposed to be getting my license that week...I didn't by the way, I waited a while. I still remember at his funeral they played "Time of your life" by Green Day.

After that there were a slew of other kids I knew that either committed suicide or died in car wrecks. The next one that really hit me kind of hard though was Joe Shuford. He was the first young person, 18, that I knew that passed away from cancer. He went to my church in South Carolina. I was away at college when he passed away. I came home for that funeral too...but that wasn't really a funeral, that was a worship service. There was praising of God that I could not even imagine at that service. His little brother got up and talked about how he was so happy that his brother was in heaven with Jesus and could run and play football again with Todd (my other friend that had died previously), talk about crazy emotional. Joe knew he was going to die and decided that he was going to make it his mission to become a fisher or men. He had bumper stickers made up that said Joe, Fight, Win! that were seen all over town and still are seen all over town. He said that he knew God gave him the cancer so people would listen to him and God called us to be fishers of men and made it his goal to bring one person to Christ every day until he passed, and I'm sure he did that...if not more.

Later that same year; my first friend that I had in Charleston, the longest friend I had ever had, and the friend that I had put on the back burner and shunned because she wasn't popular in high school passed away in a car wreck, her name was Amanda Bates. We still were close in college and talked a lot, once I got away from the entrappings of the high school popularity contest. I, however, did find out she passed away on facebook. Which, let me tell you, is not the way to find out your best friend of 10+ years passed away. She passed in a car wreck as well, she was on the interstate with her 2 year old niece in the back seat and she turned around to hand her something and drove off the side of the road into a tree head on. She died instantly we were told. Her niece was just fine, thank God. Amanada is one of the most important people that has influenced me in my life. She taught me to always be prepared (she would have anything you needed on her at any time), she taught me to always be herself and not compromise who you are for the popular crowd (which I learned after high school, but from her), and she made me want to teach again. We always knew we were going to be teachers, but then I didn't want to teach when I first started college. After Amanda passed, I drifted back to teaching eventually. Her funeral, I really don't remember much of. I remember standing in the row with our group of friends from elementary school on (there were 4 of us in that row), and all of us virtually collapsing in each others arms as they carried her casket past us up to the front of the church. I had never been to a family member's funeral (besides my grandmothers when I was very young) but this was pretty dang close. I also remember that everyone there wore pink, because it was her favorite color.

I think the next person that I knew that passed away was my dad. Who wasn't that young (in comparison to the rest of this blog), and I didn't really love him or consider him good at the time or anything. But he was 49...and had a ton of health problems (surprise, surprise given my history, right?) And he had to have been good in some respect because at one point he loved my mom enough to have 2 kids with her. And, who isn't going to be upset when their dad passes away...at least a little bit, no matter how absent they were. I remember when mom called and told me, I laughed because I thought she was joking. Then I realized she wasn't. It had always been a joke that he was dead because we thought he was for a while, then he came back, then he was gone, then he was dying in 2 weeks, in 2 months, etc, etc. So when mom calls me at like 11 o clock on a school night (I was teaching at this point) and tells me that my dad just died in heart surgery, of course I thought it was a family joke continuation. Then, of course, I realize it's 11 o clock on a school night and she's telling me I need to call the hospital and talk to them because I have to figure out what to do with his body and stuff because I'm the next of kin...and I don't even know him. I don't remember anything from that night but being very tired, driving around Salisbury in circles, numb. I don't think I cried for like a month or two. I don't think I thought it was real for that long. I honestly don't think I cried until the next death, which the anniversary of is today.

The reason I am writing this oh so joyful blog post today is because one year ago today another great friend passed away in a car wreck. Julie, 28, was the most beautiful, talented, fun to work with, joyful, passionate person I think I've ever met. She was always herself and she was so freaking beautiful being herself. She had fiery red hair and a personality to match. I worked with Julie at Escape the Daily Grind (a coffee shop) and got to be pretty decent friends with her. We would talk about such worldly things, Godly things, photography things. I would see her around town and no matter what she was doing she would sit there and have a 20 or 30 minute conversation with me, even if she was running a little late (which was often). She wanted to be a professional photographer and went to school for it so we didn't get to do things together alot because she was really only around in the summers andn I was usually gone then because I worked at camps. But she was amazing, inspiring, and so genuinely kind. She is another person that taught me never to compromise who I was for fitting in. We had such a great time whenever we worked together and loved listening to 95.7 the Ride and dancing in the back together while we washed dishes. We were two silly people together :) Julie was an inspiration to me, and her mom has been an inspiration to me since her passing. A very strong one, that keeps me focused and determined.

The next person that I knew that passed away too soon, was Vanessa Allred, 36, who passed away a couple of weeks ago. She had cancer, and she was a fighter. I didn't know V, pre cancer. But let me tell you, if someone has faith in God to do the impossible it is her. She would post the most breath taking, inspiring facebook status updates through all of her pain and through all the doctors telling her she can't do anything, etc, etc. She knew where her allegience's were to lay and she didn't go down without a fight. Her and her husband (who is the knight in shining armor every girl desires) were witnesses throughout her daily battle, right up until she passed away. Where she thanked her facebook friends for praying for her, wrote on her kids wall that she loved them, and wrote on her husbands wall that he was her hero, to which he immediately replied no, you are mine. Vanessa, was the type of person that would often message me, despite everything she was going through, and let me know that she was praying for me and hoped my pain would go away soon...right up until 3 days before she died. Vanessa, was one of the most selfless people I knew and am sorry I didn't get to know her before the cancer, because I'm sure she was awesome then too.

So there are just 6 examples in the life of one 26 year old of good, inspirational, amazing people dying way too young. So on days when I'm swollen, when I have intense pain, when I can barely move, when I am flushed, when I am nauseous, when I am so dizzy I pass out a couple of times, when I can't type or write, etc I remember when I'm in all this pain that I'm alive...and not everyone is that lucky. And I remember that I'm alive because God has a purpose for me, and I know that if I don't fulfill that purpose then I'm not doing what God wants me too and that isn't good. My purpose for that day may be to be in pain, or have symptoms so that I keep my passion for figuring out what is wrong with me and how to fix it in others. But if that's my purpose, that's my purpose, and who am I to deny God's will in my life. So please, if you are reading this, when I look like crap, and I keep fighting, don't tell me to go to bed and give up for the day, please just realize why I'm not. It says it right in the Bible in Romans 8:14-15, "God's spirit beckons. There are things to do and places to go! This resurrection life you received from God is not a timid, grave-tending life. It's adventurously expectant, greeting God with a childlike "What's next, Papa?"

He will come to us like the rain.

"Come on, let's go back to God. He hurt us, but He'll heal us. He hit us hard, but he'll put us right again. In a couple of days we'll feel better. By the third day he'll have made us brand new, alive and on our feet, fit to face Him. We're ready to study God, eager for God-knowledge. As sure as dawn breaks, so sure is His daily arrival. He comes as rain comes, as spring rain refreshing the ground." Hosea 6:3

"The thief only comes to steal and kill and destroy. I have come that they may have life and have it to the full." John 10:10

It's been over a month since I wrote, but most of you have seen me since then. I basically haven't written since I got an iPad because there "isn't an app for that"...seriously...i only do things on my iPad now pretty much. First of all, it's super cool, second of all my laptop is pretty heavy and hurts me to use it. I got it because it was too heavy to carry my laptop to school and was becoming an issue so I bought an iPad to make it lighter but now I use that sucker for everything. Cooking, reading my Bible, reading my textbooks, taking notes, watching tv, playing games, etc, etc. That thing can do anything, but blogs apparently. Plus, it's hard to use the keyboard because I haven't gotten a keyboard attachment yet so it takes a while to type really long stuff on it aside from class notes. So anyways, that is my "excuse" for not writing, as well as the fact that school is super hard and exhausting. I was going to write when I got to Salisbury, but that didn't happen either because I was having way too much fun.

As most of you know, I had a friend pass away earlier this month and it just so happened to occur at the same time as spring break so I was able to go down to Salisbury for the memorial service and stayed for the week to catch up with some people and have some fun. If you all recall, the last time I was in Salisbury, I was super super sick and was forced to lay in bed the entire time I was there which highly upset me and it felt like I was wasting money. This was a different story. I was everywhere, for most of the day everyday. It was so nice to be able to see so many people and do so many things, etc, etc. I think it could of quite honestly be one of the only times in my life I've been in Salisbury and been relatively 'healthy'. That is kind of disturbing since I lived there for about 1/3of my life. I mean of course towards the end of the week, I was getting tired but I was still trucking on and made it home safely and healthy.

Since I've been home though, which has been about a week and a half, I have been slowly deteriorating. I believe there are several factors to this. First, I didn't really use spring break the best way I should have (to rest, duh) but I really needed to see my Salisbury family and say goodbye to V and it went really well. Second, I still haven't been able to get my remicade that, if you remember from my last blog post over a month ago, I wasn't able to get because I had pneumonia in January and February...which means I am about a month and a half over due for it now. No worries though I will be getting it on Thursday (barring any catastrophes). Third, school is wiping me out and stressing me out and pissing me off.

So for the health update part of the above. I have been in remission since January and I'm starting to flare just a teensy bit again; but, like I said I am over a month behind on my remicade and I'm stressed out. So those are both ways to let me flare easily. Besides that though, I've still been gaining weight. I am almost to 160 pounds now and I've had to buy new clothes several times. This is not a bad thing, I am not saying I'm fat, but it isn't good I'm gaining as much weight as I am this fast. I will definitely be talking to my rheumy about this next week. I also was doing better in terms of fibro pain (and thank God for the drugs making the trip to the Bury much easier) but now they basically aren't working at all anymore and I'm in worse pain than I ever was much of the time. I sweat all the time, have hot flashes all the time, my skin always looks flushed, etc, etc. My tachycardia is getting pretty bad and my shortness of breath is increasing too. I was hoping with the warmer weather I would be able to go walk around outside some and try to get a little bit in shape, but I think the heat is making my symptoms worse instead of better like I predicted so that is not making me happy. I also am losing complete control/motion in my right hand, it is also trying to turn blue a lot of the time and be numb/dead most of the time. We are trying to find a surgeon that will do a surgery that was recommended to me last summer, but I chose not to do it then. Now though it's do the surgery or have no use of my right hand. That is about it health wise, which is a lot, but still trucking a long.

The reason that school is stressing me out, pissing me off, and exhausting me is because well a lot of reasons. Exhausting me is obvious, I am extremely sick taking 3 lab science classes, one very intense nutrition course, and one class that is so stupid and boring but meets 6 hours a week and makes me mad. It takes everything I have to get out of bed and go to school, especially this week. But I really do want this, so I am going to give it my all. School is stressing me out because dietetics applications were due last week, which means that I'm in the waiting game. We are waiting on interviews and waiting to find out if we get into the program. 8 undergrads and 8 graduate students get in. At last count there were 25 people applying total for the 16 spaces, but I don't know what the breakdown is for graduate/undergraduate in there so I don't know my exact odds. I am applying for the graduate program obviously, which usually has more applicants than the undergrad program so we'll see. Hopefully I'll know soon. School is pissing me off because I am just now realizing the value of that 120,000 dollar Catawba education I got. When I first graduated I thought it was not worth the money. However, I did get a job right after graduation and every single day I felt challenged at Catawba. Was forced to think out of the box, etc. At ISU, while I am learning, it is not in the way that I would like to. I have more than one professor that tells me to google the information I need to know, and most of the professors waste my time by reading me powerpoints that I've had since the first day of class. This would not happen at Catawba, and I bet the teachers at this school don't get paid as much as they do at Catawba, which sucks. So that is my two cents on state schools versus private schools right now.

Anyways, back to the references at the beginning of this post. I am feeling very blah with my faith right now. Like not that I don't believe in Him, just that I'm not trusting Him or realizing how much He has brought me through recently I guess. I guess, not really giving Him the "props He deserves". I know that God is here and that without God I would be no where near where I am today and no where near the health level I'm at today. But when I have these strings of bad days, and the pain is almost unbearable, and my friends pass away and aren't healed, and so on and so on...it's hard to remember that He is here. But He is, and He is good, and He makes beautiful things. And He never promised it would be easy...I just have to remember to keep fighting the good fight and fight it for Him and my friends that have gone on to be with Him. I just need to keep reminding myself that even though He hurt me, He will heal me, and He will make me brand new...one day

Long overdue update..and too sick to make a cute title.

It's been like 3 and a half weeks since I've written because I am super bad at going to school and doing life at the same time. I love my classes, but it is so exhausting to get up every day, go to class, sit there, and listen. You would think it wouldn't take that much energy, but it does. Then I have homework and stuff so school is doing a pretty great job at exhausting me. I am doing okay in my classes, but not as good as I should be. I think the most frustrating thing is the fibro fog.

Fibro fog is a part of the fibromyalgia that basically means that I have a lack of mental clarity that can range anywhere from forgetting where I put my keys to knowing every answer for a test but then walking in and forgetting everything...which you know realize why this is frustrating. I oftentimes forget what a word is when i'm talking and have done this for years, but now know why. But when your teachers think you are the smartest person in the class and when you are in class in a non stressful situation and know all the answers then walk into the test and the fibro fog takes over it's just not freaking fair. I mean i haven't made lower than a B on anything yet. But when there are only 8 people admitted into a program that you are told about 30 people apply to you really wanna get that A. However, all my professors that are in charge of admission to the program know what is going on and understand and have taken my disabilities into consideration for the most part and still seem to like me ok. But fibro fog pisses me off. I also get worse fibro fog when I hurt worse and i hurt worse when I stay up late to study and I study more because I know I forget more than other people...so it is like a vicious cycle of pain and fibro fog over and over again. Anyways...

Other than that school is going great. I am making good friends that are really cool. I am learning a ton of really interesting stuff. I am feeling like a scientist in my labs doing gram stains, and streak plates, and separating enzymes from oranges that can cure cancer, taking the sugar out of sodas, and the fats out of potato chips, pretty cool stuff, right? I have also finished my dietetics application and applied to grad school so now I'm just waiting and waiting.

Small group is wonderful!!! It is so nice to have a group of women that love the Lord and help support each other through everything. I haven't been able to see them in almost 2 weeks though because I am super sick right now so I miss them very much. We were going to get together last Friday, but I was starting to get sick then, and then this Wednesday for group I was super sick by then. Now I am in bed on Friday in the middle of the day because I have finally succumbed to the sickness and am taking a 3 day weekend because midterms are next week so I need to be better by then for sure.

So now that I've mentioned I'm sick I guess I need to do the every so important health update since that is what this blog is supposed to be about anyways. Well, last time I wrote I had mentioned that they thought I had lupus. I don't. Praise the Lord! At least, what the doctor said is, you don't have it yet, not sure what that means, if they are going to do more tests or what...but for right now I don't have it. He did tell me that my potassium was down to 3.0 again (which if you remember from my very first blog is right around where it was when they told me I could die and wouldn't let me leave the hospital) That pretty much terrified me and put me in a very bad mood because I was scared. They put me on potassium supplements and said if it didn't go up in a week they were going to send me to a kidney doctor because it could be something wrong with my kidneys. Well it went up with supplements so right now I am just on a high potassium diet so hopefully it will work this time. Then they said my vitamin D levels were low so I am taking a TON of vitamin D every week and more every day...so hopefully that will help some too. I guess the celiac is making me not absorb like any nutrients properly. But I must be absorbing something because I now weigh 149 pounds which is unheard of. I can't believe I weigh that much. I have been trying to get up to like 120 my whole life now I am almost 150 pounds. Crazy! I couldn't do my remicade this week because I have a cold/bronchitis/sinus thing...and you can't get remicade if you are sick because it suppresses your immune system so you get sicker if you do it. The kicker is I'm already on immunosuppressive drugs in pill form that I take every day in pill form so I really don't think I'm going to get better any faster than if I had the remicade or not because my immune system is already suppressed. But anyways...I am supposed to get it next thursday now so hopefully I will be better by then or else I have to reschedule again. But other than that, nothing else is really going on. That is pretty much an update.

I miss salisbury super bad, I also have started missing charleston super bad. I don't think it's because I'm cold because it hasn't really been cold here this winter. We did get 2 inches of snow on Valentines day, but it still wasn't that cold, in my opinion. And we still had school, which would not happen in Salisbury or in Charleston. So I think I just miss the people and the food...or how my life was in those places. Mostly I just miss being able to do stuff that everyone else can do...I think the more I get invited to stuff and the more I have to say no because I can't do it, the more I miss being on my own and being not sick...but it's ok...I guess.

answers are sometimes not what you actually want...

So I went to the rheumatologist yesterday and I LOVED him. He is very young (literally the same age as me basically) and so he is up to date on everything and still passionate because he is not burnt out yet. Basically, everyone at the office was super nice from the check in person to the nurse to the lab people to everyone...especially the doctor. I have seen my fair share of doctors (see last blog post) and the only doctor I've ever really liked a whole lot is Dr. Brown who was my general physician in Salisbury. I didn't like him all the time though, at the beginning he was like all the others and didn't believe me and blah blah...but once he believed me he was like my best friend. He really tried hard to help me, he never didn't believe me about anything again, he trusted what I told him I was feeling and what I thought I needed to do for me, and backed me up when he wanted me to quit and I wanted to keep working. He supported me and you could tell he truly cared for me. One of the reasons leaving Salisbury was so hard was because I couldn't believe I would find another doctor quite as amazing as Dr. Brown. I may have come close yesterday though.

I mentioned to the nurse yesterday (when she mentioned my blood pressure was sky rocket high which is really abnormal for me since it is usually near rock bottom) I was nervous about the appointment...which is also a little abnormal for me because I've basically done nothing for the past 2 years but go from doctor to doctor and test after test. But when he came in and asked me why I was scared to be there and I told him I wasn't nervous about tests or anything but that I was scared he wouldn't believe me. I gave a little of my background and how I had not been at all supported by the majority of my dr's and I just wanted someone to believe me and figure out what was wrong with me. He assured me that he would believe everything I told him unless I gave him a reason not to and that I could ask questions at any time and he would figure out what was wrong with me. At first, I didn't care what was wrong with me, I just wanted answers. Well, after spending 2 hours with me (yes a specialist that spent 2 hours with me in one appointment...unheard of I know)...I got answers. And let me tell you, I'm so grateful that I was eating dinner and hanging out with my small group last night because it helped me not think about it last night, because know I am getting pretty upset about it.

So we knew I had celiac, we knew I had ulcerative colitis, orthostatic hypotension, and we knew that I had tons of symptoms of some pretty other nasty chronic illnesses. But they weren't officially diagnosed. I found out yesterday officially that I have fibromyalgia, which is not autoimmune but is very common in people with automimmune disorders (which celiac is). I have known that I had fibromyalgia in my gut for a while, but honestly I was really hoping and praying I didn't have it. It is just another chronic illness that I have to deal with that has no cure that I have to deal with for the rest of my life. I have been in intense pain every day for the past 2-5 years and while yes it is nice to be able to say I have this illness, it's not in my head, there is someone who believes me, there is a name for this...I really wish it was something fixable. Something I could just have surgery for and it would be better...something they've missed on one of my MRI's or CT scans. But no, I have fibromyalgia. The only "treatment" he said there is for fibromyalgia is to exercise for 1 hour a day (which I can't do very well because of my other problems) and to sleep for 8 hours a night. There are fibro drugs out there, but he doesn't like medications and he doesn't think the fibro drugs really work. He did give me a med to help my nerves be less stimulated at night to curb the pain some so I can sleep at night and get my 8 hours in.

So after he tells me I have firbo (which is diagnosed by pushing trigger points all over your body and seeing the response to pain from this) he says he's going to do TONS more labs because he thinks I have several other problems too. These range from vitamin b12 and vitamin d deficiency all the way to he is pretty sure I have lupus too. I swear if I have lupus too, I almost want to give up. Literally every body system and organ in my body will have been attacked if I get lupus too. I am so over this. I know I said I wanted answers, but I want cureable, fixable answers. I know I should count my blessings because they aren't saying cancer and I have 3 months to live...but seriously a lifetime of chronic pain all over your entire body...and diseases that attack your organs one by one until they all fail eventually (not that this would happen for a long time, but still faster than healthy people)...and specialized diets...and exercising...and etc etc that I have to deal with already. Why can't I have a cold or the flu? Something that comes for a day or two and then leaves your body alone. My fingers are in so much pain right now from typing I can't even explain that...from typing...and I have that to look forward to for the res of my life. Walking through walmart today almost killed me because there floors are too hard...for the rest of my life I have that to look forward too. But I have a rest of my life to look forward to I guess.

This week in small group the "respectable sins" we studied were ungodliness and unthankfullnes. And let me tell you, the thoughts I have had today are pretty ungodly and unthankful. I am thankful I have an answer, I am just not thankful for the answer. I will get over it though, I always do. When I first started this blog, I talked about how it would be a beautiful, peaceful journey. Right now I feel like I am falling off the edge of a cliff. I am exhausted, irritable, in pain all the time, can barely make it through the school day and still have homework when I get home...but I know it will still be a beautiful journey. I also know that I am thankful that I have met some awesome girls here that I can hang out with to help me stay focused so that I don't get discouraged as easily. Anyways, know both my arms are going numb so I really need to stop typing...so have a good night..and I will blog again soon.