Monday, December 31, 2012

Ramblings of the past 3.5 months at 3:30 am :)


I know I never ever write in this thing...ever...I apologize if you've stumbled upon here from invisible illness week and I never updated...I apologize if you live where I once did and you have no information about me for the past 3.5 months...I apologize if you're bored and didn't want to stare at the t.v. for the 27th hour in a row and this is an escape (not just mine, but any blog) but ya know what...life is hard...so there...
I last wrote in here during invisible illness week and vowed to write every day that week, and haven't written since. November was national health blog post month where people with health blogs were supposed to write following a prompt every day for a month (I didn't once). I've had Thanksgiving break and almost all of winter break...but now here I am. At 3:30 in the morning in level like 12,000 pain with a phenegren and 5-500 norco in me and still wide awake (for those of you without health issues those 2 drugs separately would put most grown men down, i should definitely be at least a little sleepy).
So what have I been up to the last 3.5 months you ask? school. that's what.
I remember when school was easy, I didn't have to pay attention or show up and I got an A without trying. Now...It's real hard. See between my dysautonomia and fibromyalgia I got this lovely thing called brain fog. I can't remember anything...like car keys if they aren't on the dresser when I walk in my room, they are lost for a super long time. One of my friends at school told my mom when she was over here (becasue she is awesome and comes here to study so I don't have to go out after classes) it always seems like I am looking for something...phone, keys, car, books, wallet, etc and she would be correct...but if you ask me to remember a phone number that i dialed once 10 years ago, it's there...just ask me. how weird. But anyways, since I have brain fog now the RDA, DRI, and EAR level of Biotin is not exactly in the working memory really well so I have to study extra hard. Good thing I studied extra hard though because even with 17 credit hours and being sick I made a 3. 7 this semester! Go me!
Clinical's sucked this semester...bad...I hope it's the worst of all of them. I'm pretty sure the only thing I learned in them is I NEVER want to be a food service dietitian. I will ALWAYS appreciate chefs, and more importantly sous chefs and line cooks, way more than anyone will ever know. They work hard. I worked hard. I am pretty sure the work I did this semester; standing in a hot kitchen, for 6-8 hours at a time, in shoes that hurt, in long pants, wearing gloves, and cutting and stirring things repeatedly; put my healing back several years. But I did it and it's over and I don't have to redo it!!!! :)
Small group was great this semester. These ladies are the biggest blessing in my life right now. We did Beth Moore's relatively new, if not newest study, So Long Insecurity. Talk about insecurity. First off, I'm a woman. Second, I had my super successful, perfect little life ripped away from me because of something I can't control. Thirdly, I'm a woman. yeah. Did I say how much I love these ladies? Nothing can replace the love and family I had at FBC Salisbury...which brings me to another problem. I don't have a church here. I liked Maryland where I found my small group, but the service is 1.5 hours in a stadium seating theater place and I can't sit there that long. Also, there is a guy that hugs people when you walk in and everyone knows I don't like to be touched, let alone full frontal hugged, but I'm too nice and non-confrontational to tell him I don't want him too. My old therapist would laugh at this :) Here in lies another problem with not having a church, I would LOVE to start a chronic illness support group. But if I did, it would have to be at a church, because it would be faith based, because the only thing that has gotten me through this crap with somewhat of a positive attitude is my faith in God.
Healthwise has been up and down of course. Every day is pretty painful, having to get up and get out of bed because my program only allows one absence for the semester. I did get accepted into a fibromyalgia study where they are studying the use of laser therapy and resistance training and pain level. I've only done preliminary testing so far, I start the official study and find out what group I'm in sometime in January. I've been having severe abdominal pain again and not been hungry and sometimes not being able to keep food down even if I do eat it. My GI doc wanted me to have a EGD and colonoscopy (my 7th total in 2 years) the day after thanksgiving, but that was a no go for 2 reasons. I wouldn't be eating on thanksgiving and the sedation knocks me out for much more time than normal people and I couldn't miss the last 2 weeks of classes and finals, so I had it done the Tuesday after finals. The lower part, where the pain is just showed inactive left colon ulcerative colitis (which is a praise the Lord since last September they were wanting to take out my whole colon because my colits was so bad, but still didn't give an answer). The upper part showed erosive esophogitis due to undiagnosed and therefore untreated GERD. This is why I've been having trouble swallowing, burning, and too much coughing. Since none of this was an answer to my actual problems I had a CT with contrast (oral and IV) done that the nurse called to tell me wasn't "too alarming" and I could go over the results and next steps at my appointment on January 16th...which is still 3 weeks away and I am still super nauseous, I'm in pain that is crazy, and I just want to be able to eat...and that's not happening...good thing is I'm losing weight, but not in a good way :(
other things on my mind right now that you probably don't care about:
1. I really don't know why my body reacts opposite to all meds
2. I miss my spoon ring
3. I miss my unswollen body
4. I want new organs
5. I really miss playing music...I played for piano the first time in like 7 months yesterday and it was awesome.
6. It was amazing how weird it was at first where I was trying to read the notes, then something in my head turned on and was like just play it and I didn't need to read the notes anymore.
7. When FoodNetwork tells you to have a goodnight and it's actually morning you've been up way too long.
8. I can't wait to start my thesis on "The effects of an anti-inflammotory diet in patients with fibromyalgia"
9. I'm finally getting tired :)
10. I got a puppy you people don't even know I got a puppy
Here is a picture:
All done, have a good day :)

Tuesday, September 11, 2012

HAPPY INVISIBLE ILLNESS AWARENESS WEEK!!! :)


So whether or not you know it, it's national invisible chronic illness awareness week. This is a week where all of us with invisible illnesses support each other and realize that there is hope for us and there are a lot of us to band together for each other.
One of the things the website suggests is to do the 30 things you may not know about me meme. I know I've already done it on here, but it's been a while, most of my answers have changed and it's awareness week, so I'm doing it again. I will also try to blog every day for the rest of this week. I missed yesterday because I was on a homework mission. Next week...I'm going to try to catch the world back up on Meggers land and get the blog up and running, I have over 1000 hits now...and didn't realize it, so I obviously have readers, I guess I should give you guys something to read :)
Love y'all, here's my list :)
30 things you may not know about my invisible illness(es) are, in honor of invisible illness week:) (sorry it's so long)
1. The illness(es) I live with is (are): Celiac, Ulcerative Colitis, Fibromyalgia, Endometriosis, PCOS, and Dysautonomia (NCS) 2. I was diagnosed with it in the year: 2009, 2009, 2012, 2010, 2011, 2012 respectively 3. But I had symptoms since: I was 14 or 15 years old 4. The biggest adjustment I’ve had to make is: learning to say no 5. Most people assume: I am not sick because I look healthy and put a happy face on most days and do more than most healthy people would. 6. The hardest part about mornings are: can't move to get out of bed because I'm so stiff from the fibro, but I have to go to the bathroom immediately because of the UC and NCS 7. My favorite medical TV show is: all of them...but probably grey's anatomy for drama's and trauma life in the E.R. for discovery health ones. 8. A gadget I couldn’t live without is: my IPAD!!! It keeps me connected to my friends and has all kinds of useful apps for me that make my life easier like having my books and notes in it so i don't have to carry too much and medical apps to keep track of everything 9. The hardest part about nights are: the pain, the getting up to go to the bathroom, and the not sleeping, ever, it feels like at least 10. Each day I take 21-25 (depending on the pain level) pills & vitamins. (No comments, please) 11. Regarding alternative treatments I: love them and try them whenever possible. I would much rather get a chiropractic adjustment than add 10 more pills a day :) 12. If I had to choose between an invisible illness or visible I would choose: invisible, i like that people can't judge me based on what I look like physically, I get to show them who I am before they know I'm sick 13. Regarding working and career: right now I've lost one career to my disabilities and I am currently on full time disability. I am working my butt off in dietetic school to possibly work again one day, but it is doubtful. I at least want to do non-profit work from bed once I graduate, and I will :) 14. People would be surprised to know: I really don't want to be sick...it's not my idea of fun...I don't do this for attention. 15. The hardest thing to accept about my new reality has been: I can't exercise, I have medication induced obesity, I can't do it all, I will never be who I once was again. 16. Something I never thought I could do with my illness that I did was: go back to school 17. The commercials about my illness: there are none except lyrica commercials and those make me laugh because I'm on lyrica and even on it there is no way in the world I can do the things those people do in the commercials without immense pain 18. Something I really miss doing since I was diagnosed is: living spontaneously 19. It was really hard to have to give up: exercising! Just being able to stand up without worrying about passing out 20. A new hobby I have taken up since my diagnosis is: blogging (though I haven't done it in a super long time), going to a small group which is the best thing in my life right now, love you girls :) 21. If I could have one day of feeling normal again I would: do all the things. Run 20 miles, teach my babies again, dance, stand up for longer than 30 minutes, play my instruments again, write with a pen without hurting, do anything without hurting, camp, work at camp, not have to say "maybe, it depends how I feel" 22. My illness has taught me: the things most people think are the end of the world aren't; also, what i have is not the end of the world. everyone is broken. there is ALWAYS someone worse off than you and there is ALWAYS HOPE and God loves you. 23. Want to know a secret? One thing people say that gets under my skin is: you aren't really sick, you look completely fine. or. i bet if you exercised you would feel better. 24. But I love it when people: ask me specific things that they can do for me. example i'm on my way to the grocery store can i pick something up for you, instead of let me know what to do for you. 25. My favorite motto, scripture, quote that gets me through tough times is: "I will not cause pain without allowing something new to be born, says the Lord." Isaiah 66:9 "For You created my inmost being, You knit me together in my mother's womb, I praise You because I am fearfully and wonderfully made." Psalm 139:13-14 and so many more...just go to my pinterest boards and look at them, those are my inspiration. 26. When someone is diagnosed I’d like to tell them: it will all be ok, breathe, realize you won't be able to do everything you used to, be ok with it, then just be. it will all be ok. 27. Something that has surprised me about living with an illness is: it gives you an inordinate amount of determination and perseverance, it's almost superhuman. 28. The nicest thing someone did for me when I wasn’t feeling well was: allowed me to be in a bad mood (that is like everyone on my friends list); also, one of my college roommates bought me an orange light up frog, because I love frogs and orange, that was before I was diagnosed with any of my illnesses, but I still have it :) 29. I’m involved with Invisible Illness Week because: I am tired of people telling me "But you dont look sick", I truly believe awareness needs to be super huge for all of the invisible illnesses not just the ones I have. 30. The fact that you read this list makes me feel: loved, appreciated, and hopeful that you learned something and can apply it to your life :)

Thursday, July 26, 2012

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?

Tuesday, June 26, 2012

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 :)

Sunday, May 6, 2012

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 :)

Thursday, March 22, 2012

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?"

Tuesday, March 20, 2012

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