It's a perfect day for a run...

As most of you know, I used to be a pretty intense runner, and track and field star. That is before I got colitis, celiac, fibromyalgia, endometriosis, PCOS, EDS hypermobility, and Dysautonomia that is. You may not know that part of the reason it took me so long to get diagnosed is because I was still intensely running (between 2 and 10 miles a day) and passing out daily because I didn't want to admit I couldn't run anymore and it confused my doctors.

You also probably don't know that every single morning the first thing I do before I move is look out the window and decide if it would be a good day for a run. I haven't been able to run, let alone walk around the block, since October 2012, yet I still do this EVERY SINGLE MORNING. Then every single morning, after I make my decision I quickly realize that it makes no difference if it's a good day for a run or not because I am so stiff I can't move, once I do move and stand up I black out from the blood pressure change,  the bottom of my feet burn and hurt so bad from the pressure of standing on them, I'm nauseous and dizzy, I get sweaty and clammy, and that's just my symptoms from walking to the bathroom. Then I quickly realize that even if it's a great day for a run, I ain't going on one anytime soon. And then I cry, every single morning.

See what people who don't have a chronic illness don't realize is that those of us with chronic illnesses have to grieve our past life every day. We aren't missing an arm or leg, we aren't dying anytime soon, we look normal to you, but we aren't normal. So when we wake up in the morning for a split second we (read I) think that there is nothing wrong with me, until I try to move. Then I have to go through the grieving process all over again.

Here is another thing you may not realize. Summer is really hard for those of us with chronic illnesses, especially those of us who are young with chronic illnesses. While you (regardless of age) are planning your vacation, cookouts, pool parties, etc. We are planning our out of town doctor's appointments, our weekly saline infusions, how to make as many trips in one because we can't be in the car for very long because of the heat (because we don't thermoregulate), and which rerun we are gonna watch today. We don't get to go to a lot of the fun stuff, and if we do get invited to something (because a lot of people simply stop inviting us) we often feel obligated to go and overdo it and are down for a week or more.

You don't realize how when you're judging us based on the things we do and then say that we don't feel good that we probably really haven't felt good at all the whole time, but we wanted to do something for an hour today because contrary to popular belief laying on the couch every day for the rest of your life isn't fun. It's really annoying. Sure, you would love to lay around for a couple of days since you "have to go to work every day" but I bet after 3 or 4 days you would go absolutely insane. That brings me to another point. I don't want to be on disability for the rest of my life, I will likely need to, but I don't want to. I am 27, I had a job I loved, of course I want to go to work every day and be normal and make more than 700 dollars a month...yeah that's what I live on...

You don't realize that we miss our old life so doing small things are huge for us. Being able to go get coffee with my dog every day is HUGE for me, it is my sanity, my independence. When I'm driving the  20 minutes (10 minutes each way) to the coffee shop I think about my old life. I think about my family in North Carolina, I think about my kids that I taught and played basketball with, I think about my track team that I coached, I think about all the jobs I had at various places, I think about autism camp, I think about camp, I think about music and all the places I played and all the instruments I played, I think about running, I think about track meets, I think about sitting on the beach, I think about hiking.

When I'm home laying in bed, I think about smaller things that I would kill to be able to do from my old life. I think about being able to stand up to wash the dishes in the sink, I think about being able to stand up to take a shower, I think about being able to do the laundry without pain and tachycardia, I think about shaving my legs, I think about being able to go grocery shopping, I think about being able to go in a mall to shop for things instead of having to do the majority of my shopping online, I think about being able to go to school and do homework without any physical or mental repercussions, I think about being able to remember that the garbage disposal is broken before I put food down it....again....and have to dig it out....again.

My point to this endless rambling of words is that being chronically ill sucks. People who aren't chronically ill seem to think we are living the life of king's over here and those of us that are chronically ill would do anything to be living your life, just for one day again. We are tired of grieving for our old life every single day. We are tired of putting on faces for the world, and when asked the question "How are you?" automatically answering "I'm fine" because no one wants the real answer. Most of us, when asked the question how do we feel compared to a typical (normal) person scale don't even know how to answer the question because we don't remember what normal feels like. That is besides the first 3 minutes of the day, when you open your eyes, look out the window, see the sun hitting the trees at just the perfect angle, you can almost feel the 65 degree sun on your face and you realize it's a perfect day for a run, until your feet hit the floor and you grieve your life again...until tomorrow...

Understanding Understanding

How do you understand things? How do you process things? Do you understand what the word understand means?

Let's rewind a little bit, or a lotta bit to September 2011 when I started this here blog. I was in the hospital, had been told I probably wouldn't make it, wasn't conscious really for a while, but then I made it and they still wouldn't let me leave for a long time because my Potassium was critically low (which at the time as a just lost her job special ed teacher had no idea what that meant, now as an almost dietitian I know that means serious business), so I was bored and frustrated and didn't have any social connection and started this. Now it has almost 1500 views which I never imagined, I never thought I would post such intimate details about my life on the world wide web (heck my assistant didn't even know how sick I was as you do, heck my principal didn't even know how sick I was as you do), but here we are. Today.

Oh wait, I wasn't done rewinding. Right. Besides being bored in the hospital, I also started this blog as my personal journal and reflection on my healing journey through losing my job, moving away from my "home", healing from my illnesses (whatever that means), and anything else I felt like I needed to get off my chest at the moment. I entitled my Blog "Won Peace at a Time" because it is about my journey of healing that would hopefully be peaceful and hopefully I would win it, so that's why the play on words are in there. Also, since I was an Autism teacher, and the puzzle piece is their symbol so the piece came from that too because I wanted to keep them close to me as well. When I wrote my about section I put "I am a young adult woman, who thought I had it all together, then realized I didn't. Which, I am fairly certain happens to all of us. However, it happened to me all very fast and in all aspects of my life. I lost my health, my job, and basically my whole life as I know it all within the span of a month. I am putting my life back together one piece at a time and hope to do it with peace. Hope you enjoy as I seek to keep my identity in Christ while putting my life back together into what He wants me to be!" So like I said, this blog was to be my place where I could write things out to help myself understand my life a little better one piece at a time.

Ok, done rewinding. Present day. As in literally today. Back to my question. How do you understand things?

Let me tell you what I would like my answer to be, what my answer should be. "Hey God, I know you love me, I know you made me for your will. I know I am perfect in your eyes. I know there is a purpose for everything. I know that I am fearfully and wonderfully made. I do not need an explanation. I am trusting you with my whole mind (and body). I am not leaning on my own understanding."

Let me tell ya what my answer IS, as in I had this crazy revelation I'm getting to (in a minute I promise) 5 hours ago and I'm still actively understanding like this instead (which isn't bad, but should be secondary):

• Let me Google every symptom I ever have and see which is gonna kill me first
• Let me go to another 20 doctors until  I find one that tells me something I WANT to hear
• Let me try another cocktail of 30 pills a day and see if the side effects or reliefs are different this time
• Let me join 400 support groups on Facebook to see what they have to say about this and to see if they feel the same way I do so I don't feel as crazy
• Let me try to do my own master's thesis (voluntarily) to find a "cure" for one of my diseases
• Let me go to class all day to the point that I can't function and heal at all to learn a little minuscule amount of information about my problems to understand better
• Let me be too tired to focus on my Bible Study I've been haphazardly doing all semester until it smacks me across the face on the last video session and makes me realize that maybe I should have been paying attention and I wouldn't need to be seeking understanding from so many other sources for so long. 

I don't think that last part was in there. As Christian's we always say that we do the right things, we go to our Bible study every week, we check all the boxes off, and we get to Heaven, right? Wrong. Basically.

Basically, I spent all semester going on auto-pilot all throughout my day and checked all the boxes off, then it was Thursday at 6 and it was time for Small Group and I went and I had my homework, that was done to the point the questions were filled in, but I didn't think about the answers, because I didn't have time. 

Tonight was the last night, the video part, we were doing a Beth Moore study. I could listen to Beth Moore read the Bible to me all day long. She has such a way with words and emotion and imagery, and tonight her words and emotion and imagery slapped me right across the face. 

Ya know what tonight's study was on? Understanding. She pointed out that the Greek word for understanding is suniemi which means "assembling individual facts into an organized whole, as collecting the pieces of a puzzle and putting them together." Beth used the bible verse Matthew 13:15 (message version below) to back her up on this and it said,

 "Your ears are open but you don't hear a thing.
Your eyes are awake but you don't see a thing.
The people are blockheads!
They stick fingers in their ears
so they won't have to listen;
They screw their eyes shut
so they won't have to look,
so they won't have to deal with me face-to-face
and LET ME HEAL THEM."

Basically God is telling me to stop.and.let.Him.heal.me.

I need to stop shutting Him out. I need to listen to Him. I'm doing all this research trying to find "understanding", trying to put all these individual facts into an organized whole, trying to put together all these puzzle pieces one at a time and forgetting the One who holds the last piece. The peace of the puzzle. The One with the understanding. The One who knows why.

I know I will not be healed on Earth. But I know that God knows why. I know that He has a purpose. I know that He holds the key to my suniemi, He holds the last piece to my puzzle. It's the peace His son brought by dying on the cross. Making it true that we don't need earthly understanding, the understanding we have in Him is enough.

And this is further confirmation, 1 year 5 months and 27 days later, why I need to rely on God to get me through this healing process with understanding one piece at a time.

Father of the fatherless?

This blog posting may have a different pace, but it's something I need to work through and some others close to me do too...so here it goes.

Well, now that I've told you all about every aspect of my life...from my gi tract, to my reproductive system, to all the doctors i've seen in the past 2 years and exactly what they've told me...I'm going to tell you something personal...haha...yeah...because none of that stuff is really personal anymore...

If you personally know me, you know that my dad was not a real stellar dad. You know that he left me and my sister when we were young, you know that at one point yes- he was in fact married to two people at once (one of them being my mom) and we still aren't sure how it was legal, you will know that he made promise upon promise upon promise to make things better, to fix things, to make it ok...and when the day came for him to fix it, he disappeared again. You may also know some other things, but please don't comment them here, that means I just trust you with more info than others. You also probably know that he died at the age of 49, one month and one day after the first time I was hospitalized (and i've inherited some of his health issues, though most of his were bad life decisions), and when my mom called and told me I thought it was a joke because it wasn't the first time he had "died". I quickly learned it wasn't a joke since at this point in his life he wasn't married, and he and my mom were obviously divorced and as his eldest surviving child I was the "next of kin" all the sudden for a father I didn't know, talking to a hospital in Texas or Arizona I don't remember, at 1:30 in the morning, when I had to teach the next day, trying to figure out what to do with my dead father's organs when I didn't know what he wanted to be done with them. I also had to tell the people on the phone I didn't know if they could use them because he had a substance abuse problem, they assured me they could use his eyes and skin. I remember having to post on Facebook that my dad had died, but I didn't know what that meant. I didn't know whether to be relieved or sad. I didn't know what to think. I remember the first thing out of my mouth to my mom that was 'logical' was "I wish I could just go eat a whole loaf of bread and eat it right now" (remember this is one month after I found out I had to be gluten free). I remember what I did instead was drive in circles around the wonderful town of Salisbury, NC and didn't cry. In fact I didn't really cry for a long, long time..and I still never really processed it. That was 3.5 years ago, hard to believe.

I still haven't dealt with it, and it became abundantly obvious this week. Last Wednesday (1.5 weeks ago), after I finally got to sleep, which hasn't been happening well lately, I had the strangest dream. I was in my 27 year old body laying on my stomach in the middle of the floor in between 2 fathers who I know personally playing with their children (between 2 and 3 years old), having a temper tantrum and screaming "I want my daddy, I want my daddy". Now mind you, I have never really wanted my daddy, I have never used that word in regards to him, but for some reason 3.5 years after my dad has died, I have a dream that I want my daddy and I want him bad. To make the story even more interesting, the next night right after this there is a whole category on Jeopardy (which I watch every night) on great father's or something like that. Saturday thru Tuesday I was constantly in prayer for a friend of mine who suddenly lost her father to a stroke who is around the age I was when my dad passed away (save the fact that she was super close to her father). People have been posting pictures of pretty flowers they have photos of and one of the best pictures I ever took of a flower was when I was in Arizona, seeing my father for the last time with my sister before he passed away for his "last wish", so I went to the photo album to find the picture and saw me sitting on the bed with my father. Then tonight, a dear sweet gal, whom I love dearly, was struggling. Once I finally got her to let me know what was up she let me know that "I've had my father on my mind a TON lately. Like it's an every day thing and...I just don't understand how someone could walk out on their kid. It pisses me off." Talk about getting right to the point of my heart. Yeah I said it, my heart, not her heart, mine. She was confiding in me with this huge problem she was having, and lo and behold it was exactly what I've been struggling with too. In fact, I just asked my small group to pray to bring something to fruition of this obsession I've been having with it last night, talk about fast turn around.

See at first, I thought it's like my friend said, it pisses me off. And I thought I was pissed off at my dad. But then after the Easter service this past Sunday at my church (John 20) where they talked about taking my Lord away from me and hiding him, making some father connections there as well (in my head), and me really thinking about this stuff that's been going on I think, maybe just maybe I'm mad at God. and that's ok. as long as I tell Him out loud.

So why am I mad at God, you ask? Because God tells me in His Word in Psalm 68:5 that He is a Father to the fatherless. Not only does God tell you that. Any Christian you run into on the side of the street who finds out you don't have a father figure tells you don't worry, God's your Father, just think of God as your Father. Well, let me tell ya what people. That's fine and dandy for all you little girls that grew up sitting on your papa's lap, with them reading a book to you, tucking you into bed at night, making sure there were no monsters under your bed. But when you tell me, or my friend that God is my Father, that just makes me wary of God. Why would I want God to abandon me, hurt me, leave me, disappoint me,etc. Now, I know there is not Biblical evidence for this. In fact, I'm getting there, bear with me. But that is what we hear when you say that. We know you are trying to help, but think about what you've said. The only father figure we've had is one of a negative connotation and you are going to tell us it's ok because this God thing is going to be our Father instead...I mean let's be honest, at first, I was just like oh good, a father that doesn't have to "disappear" literally because I already can't see him.

But then you run into opposite stories like my other friend who raced home to make sure she could be by her daddy's side when his heart stopped. Because she had the kind of father that we want God to be like. She treasured the 19 hours she got to hold her daddy's hand before he went to be with the Father and was so thankful for that time. You run into fathers like my grandpa, who still does anything for his kids even though they are all very much adults. You run into the kinds of fathers that would do anything for everyone, those are the kind of fathers that we who are 'fatherless' need to be aware are out there. You run into the fathers that were horrible their whole fatherhood and then all the sudden realize what they did wrong (more on that in a minute). This is where the biblical truth of 'adoption' comes into play.

One of my favorite verses I use to get through this is Galatians 4:6-7 "Because you are His sons, God sent the Spirit of his Son into our hearts, the Spirit calls out, 'Abba Father.' So you are no longer a slave, but God's child; and since you are his child, God has also made you an heir. How great is it to think that we are an heir to THE Father, even if we miss our earthly dad, even if it pisses us off, even if we feel like he has been taken from us and hidden and it's unfair, even if we are disappointed. We are adopted into the kingdom of Heaven as an heir to the throne...doesn't that blow your mind? Blow's mine for sure. I know it doesn't make it better, I know it doesn't make it hurt less, man do I know that. I know it better than any person on the street. I've been dealing with the pain for 27 years. But it makes it a little better. Just a little bit. For today, and then I read the verse again tomorrow, that I am adopted by the best Father ever and I am an heir to the only throne that I would ever want to be.

From the last letter I got from my dad: "My love for you was never actions you saw, but if you could have only felt it. I love you now and forever. Dad"

Hope in the form of an orange hotel room

I have been anxiously, yet patiently at the same time, waiting for around 4 months now for spring break so that I could see some new docs to try to get some real answers about my ever worsening, complex stupid body and medical conditions. Even though I am still actively pursuing my master's in dietetics at this point I'm not planning on working in the field any time soon, because at this point the main thing I'm learning in school is that I won't be able to work in the foreseeable future. Between going to class for a measly 5 hours a day and sleeping in between every class, to pushing through clinicals and being so tired I'm literally falling asleep there, to as soon as I get home from anything immediately going to bed and laying there and can't move because my body is so overstimulated and messed up from over processing all day, it's just not possible to think I could hold down, let alone get hired for a job in the field. In addition, in the past 3 weeks I've had 6 doctors appointments, 1 infusion (that lasts 4 hours), 1 4 hour test, 2 days of out of town doctor's appointments included, and almost all days where I felt like I was going to die and didn't want to get out of bed but did anyway so I didn't get kicked out of the program, and 1 ER visit--who is gonna hire that, for real. But I digress, back to the doctor appointment marathon.

My cardiologist has basically been like for the past couple of months, "well, I know you have dysautonomia, but I don't know what to do about it. I could send you to Mayo or Cleveland Clinic, but beyond that we can just keep you on your beta blocker, compression stockings, salt, IV's, etc; but I don't know how to stop it." Because of this, and with the help of my support group, I found out neurologists can also be vital in treating this condition. I saw one in Terre Haute and they didn't know what to do. I found out there is one in Chicago that is supposed to be really good, but I have Medicaid and they don't cover out of state docs. I called him, just to inquire what it would cost to see him if I payed cash and it was $620 for one appointment, which is near impossible for me. So, in a fit of desperation I started googling neurologist, dysautonomia, Indiana and any combination there of. I finally kept getting lots of hits for IU Health/IU Med Center, which is the closest thing Indiana has to Mayo, Cleveland, Vanderbilt, Rush, etc. So I called a neurologist office and asked the receptionist if any of the docs there had heard of dysautonomia or autonomic dysfunction and they gave me the name of this doc. So I made an appointment for spring break (4 months away), prayed, and continued on with my painful, tiring life. Around the same time, I started having stomach issues again, which I think I've mentioned here before already. The GI I was seeing scoped me again, found nothing, did a CT scan again, found nothing, asked me about my diet, and found nothing. So I asked to be referred to IU and fired him. Got an appointment for spring break (4 months away with not eating properly, being nauseous 24/7, and having severe sharp stomach pains every time I forced myself to eat for several hours later), prayed, and continued on with my painful, tiring life.

Fast forward 4 long months. 4 long months where I'm trying to go to school, do my best at clinicals, work on getting my thesis ready for the IRB committee so I can do my study in the summer, working on projects, etc. I'm exhausted, moody, in pain all the time, and come home almost every day and say I don't know why I'm trying to do this anymore, it's not worth it. Then all the appointments come. I saw the cardiologist again 2 weeks ago. He is weaning me off the Beta Blocker and putting me on a calcium channel blocker (which I've already started, but am not all the way off the beta blocker yet). He also prescribed me prescription strength compression stockings, which I'm going to go get fitted for tomorrow hopefully. He also was going to write me a standing order of IV fluids so I don't have to beg the ER for fluids, but he only has privileges in Indianapolis and I'm not driving 2 hours each way to get fluids, so he asked me to ask my PCP and he would talk to them if necessary. He is also trying to get me into Mayo as a possible "indigent patient" so I wouldn't have to pay for it, if I decided to go.

Last Friday, a week and a half after the cardiologist I had an appointment with my super rheumy. He is just as frustrated with all of this as I am. He doesn't know why I have it, he wants me to be able to wake up one day and run again. He wants me to be healed, but knows realistically it's probably not happening. He is supportive, yet logical. I told him about the cardiologist asking about fluids and immediately had a nurse get on the phone with my cardiologist and the insurance company and start the pre-approval process of getting fluids at his office during my remicade infusions and more if necessary. He changed up some of my meds. He listened, which is really rare. He printed out all my labs for the past year to bring with me to the specialists this week and said he wanted me to call him once I had heard what they had to say so he could be informed. We are still waiting on the insurance company approval to come back for the fluids, but at least we are on the right track there. We have made an appointment 3 months from now and promises of constant communication if necessary, as usual.

Monday (3 days ago) was the long awaited neurologist appointment with the neuro that had at least "heard of dysautonomia". Well, God was faithful and he had definitely heard of it. He knew how it was treated. He knew what meds to use. He knew what questions to ask before I could hint at them. He asked me about what I described as painful convulsions and muscle spasms. He came up with some meds to try to reduce or eliminate my "convulsions". I also asked him about some "fainting" I've had that is strange. I'm sitting there carrying on a conversation, being normal, lose consciousness (but can sometimes hear, I'm just paralyzed really, sometimes I'm completely gone though) for about 30 seconds each time, but it happens 3-7 times in a row usually. Sometimes, I also wake up and can't move for a while like I'm paralyzed, but can see and hear and talk, just can't move. He said these could be faints, could be my autonomic nervous system misbehaving, or could be seizures. He said he didn't want to say they were seizures though because I could lose my license from that, and it doesn't happen when I'm driving so we were going to put me on a med to hopefully stop the "events" and if they don't stop by the next time I see him we will have to evaluate further. My favorite part of the appointment is when I knew he completely understood and this would be a good doc. I asked him what labs and tests he thought he was going to run towards the end of the appointment because I like to mentally prepare myself for them. He said, "why would I order any tests, you've had general labs recently and any test I will run will come back normal because you have an autonomic nervous system disorder, those don't show up on labs, they just make you made because everything comes back normal." Which, if you know anything about dysautonomia, that is the truest truth you will ever hear and is why, oftentimes, no one believes us because every test comes back normal. After I saw him, my hope was even more confirmed when I got my tired, achy body to the hotel room in the next town where my next days tests were and discovered my hotel room was orange. And if you couldn't tell from my blog background, that's my favorite color. I knew that the next day would be good as well. I went to bed early and headed to the other hospital (same system just different location) for my next tests.

I had to be at the hospital at 9, had my car valeted, got lost a couple of times and finally found the place where my test was. I was having a gastric emptying study to see if I was having motility issues in my stomach to find out why the pain was every time I ate and why I was nauseous all the time. If you've never heard of the test, this is how it goes. You eat a gigantic pile of scrambled eggs (egg beaters, not real ones either) in 10 minutes with radioactive dye in them and get one glass of water. You aren't allowed to eat or drink from midnight until the end of the test. Therefore, I was without fluids for a full 13.5 hours until the test was over, which is disastrous for someone with dysautonomia. Anyways, after you eat the eggs they scan your front and back at 0 minutes, 30 minutes, 1 hour, 2 hours, and 4 hours to see where the food is in your GI Tract and ask you about your pain and how you feel before the scan while the test is going on. Coincidentally, or not, every time they asked me about where my pain was or where my nausea was centered BEFORE they scanned me, once they scanned me they found that the food was exactly in the place where I was feeling the sharp stabbing pains. I've never had this test done before, so I wouldn't know where the food was supposed to be at one time so they found it very interesting and correlative that the pain was exactly where the food was every time. This was kind of proving that there was something, seemingly, wrong with me since the pain was correlating with food placement at least. Unfortunately, the food was moving at the right rate, so that was not the explanation. After that test, I went to the GI doc appointment.

At first, I didn't think I would like him. But it quickly turned for the better. He ended up knowing more about dysautonomia and how it affects digestion than any doc that I've ever met. He spent an hour and a half with me, asking me questions not only about my stomach, but also about my autonomic nervous system. I also carry around a medical binder with me to all my new appointments with data about my health, how I feel, doctor print outs from each visit, and labs. He took my whole binder and copied it so he could review it. He also asked for all my current physicians phone numbers so he can call them all and get on the same page with all of them and make sure they all agree with treatment plans for the future. We got to the reason why I was there and basically said the gastric emptying study was normal in terms of speed, but it was interesting in terms of me feeling the pain exactly where the food was and said that was insightful. He said I'm probably nauseous 24/7 because the stomach is right in front of the vagus nerve (which is the main nerve affected in dysautonomia), almost attached, and can give signals to the brain to be nauseous and full and on and on. So basically, my stomach issues are all dysautonomia's fault, surprise, surprise. Also, he said since the pain is happening where the food is, it could be pain because everything in my body is so over reactive compared to a normal person from the dysautonomia and fibromyalgia so that's why it hurts. This doesn't make it better, but at least it's an answer as to why it hurts, instead of "I don't know, just deal with it," like the other GI I fired said. To deal with the nausea he prescribed me prescription grade ginger (ya know how people drink ginger ale when they're nauseous, well, I'm taking like the equivalent of 500 ginger ale's in a pill every day now) and a nausea med called Kytril. Well, unfortunately the Kytril is $2000 a month, ya you read that right, there is no decimal problem there, and that is for the generic and the insurance won't cover it since there are meds that do the same thing much cheaper. So currently, my GI doc is talking with insurance to convince them I need it. The idea is if we can calm down the nausea enough, we can calm down the nerves in the GI tract and the pain will be less. If we can't do that, we will talk about a gastric pacemaker which would be implanted in my stomach to stimulate my stomach to tell my brain she's not really sick, she just thinks she is so I can eat properly and get nutrition back into me and get used to eating again.

So I think that is about all for now. Basically we don't know how to fix anything, but we know how to help alleviate some of the symptoms. And it has been confirmed on paper and in person by at least 3 docs in a week, sort of 4, that I am not a whack job, I do have an autonomic nervous system disorder, it sucks, and we know that but we've got to deal with what we can when we can and leave the rest up to God. For now, I'm gonna try the new drugs and try to finish up this degree with some sort of sanity left. This has been plenty of a long enough update. Sorry it's so long, but people wanted to know what was going on, so here it is, for the most part spelled out. Thanks for reading, caring, and praying. Love to y'all :)

H.O.P.E.

Well, if you've read any of my blog, you know that I am a Christian...and I try, although not as well lately, to live with my illness in a positive way because I trust God. Well-- with the amount of sick I was over the holiday season, going back to school, dealing with all my crazy stuff, starting my thesis, being in a study, and trying to juggle doctor's appointments with my school schedule to miss as little school as possible it is easy (sadly) to loose track of how awesome God is and how much he has you in His hand at all times. Anyways, people keep telling me to have hope, to pray harder and I will be healed, to get over it and do stuff and it will all go away (p.s. I think for someone who is chronically ill, I freaking do a lot). Let me tell ya what, it won't. The illnesses I have are chronic. Let me give you the definition of chronic: persistently recurring for a long time or constantly recurring. This means it is NEVER going away, until I die. So please, if you are a person who does this, stop telling me about the latest greatest cure for my illness that doctors don't even know much about, so therefore you really don't know how to heal it. But don't worry, God does. Here is the cure for my illness. H.O.P.E.

Most people think of the definition of hope as "a feeling of expectation and desire for a certain thing to happen." That seems like a fitting definition for a person with a chronic illness. Like the expectation and desire they have is for their illness to end. But as a Christian, my definition of hope is a little different. To me H.O.P.E. means Hold On Pain Ends. I saw this on a meme on Pinterest one day and it really struck me. As a Christian, those of us with struggles (which is really all of us, let's be serious) believe the ultimate healing (physically, mentally, emotionally, or spiritually) is when we have ended our earthly life and are worshiping at the feet of Jesus in heaven. This is when my pain will end, and I am fervently praying for and waiting for this day (but am not rushing it along by any means). Because when I die, I will be healed. I will be running marathons, high jumping, teaching, standing up longer than 30 minutes without wanting to pass out, etc. Jesus will have given me the ultimate healing, my H.O.P.E. for all these years will have been answered. But until then, I got a whole lot of crap to deal with and it helps to have a positive attitude about it...which is what I've been trying to do for the past 4 days.

So let me fill you in on some of the crap, while I'm here and try to do it sort of positively...although this is one of my outlets so it may not be all positive. The holiday sickness stomach stuff still isn't resolved. That doc got fired, big time. I am still waiting to get a referral to IU Med for a new GI doc who will hopefully actually run tests with food in my stomach, since the problems come when food is in my body, not when it's empty from food. My stupid ANS system has been way off again. My heart rate and BP had been super high and acting naughty. Like 140 beats per minute just standing up. My cardiologist was trying to be nice and not have me miss a day of school so he was trying to fix me over the phone. He prescribed me a new med. Well the new med tanked my BP and my heart rate so now I'm off of it and I'm waiting for my appointment that I will have to miss school for at the end of February to figure out next steps. I'm currently on 2 different heart meds 3 times a day. I should be somewhat stabilized. In addition, my pain levels have been super high as well. My joints are killing me. I'm still not able to put pressure on my feet first thing in the morning. Each joint in my toes and my fingers is in extreme pain. My wrists, my knees, and my ankles are in a lot of distress as well. My tailbone hurts all the time, and on and on. I see the super rheumy in March, but I'm thinking about emailing him sooner than that to kind of get his brain going before I get there.

Classes this semester are really interesting and so are clinicals so far, so school is going pretty decent right now. Minus the amount of work there is and how tired it makes me. I have also started my thesis, I'm about 1/3 of the way done with my literature review. I'm trying to get my first 3 chapters done by March 1st so I can apply for a grant to get some money so I can maybe pay my participants at least a small incentive. It is really turning out to be pretty interesting. I also found out that a pain management doctor that's here in town is trying to do a study on the same thing, so maybe we can share resources. It's also coincidentally the same pain doctor that my rheumy keeps trying to get me to go see...so that may be interesting. If she believes diet can help alleviate symptoms, it may be a pain doc I might actually wanna try out.

As far as the study goes, I have done all of the pre testing stuff. I start the actual study this weekend. It runs for 8 weeks. It is going to be a long 8 weeks I have a feeling. I was placed in the resistance training only group. This means that I am working out two times a week. I am doing 4 different exercises with 3 reps of 10 times each and 1 rep of 12 times on all 4 exercises. The study director said it's going to hurt really bad at first, but should get better over time. Unfortunately, I don't have the time to be laying around not being able to walk or move my arms at first because my muscles are like jello and in pain. Anyways, I'm hoping it helps, and I'm hoping he gets good data for my suffering :)

So that should be it for now. The only thing I know that can get me through is to remember H.O.P.E. and it will all be ok. :)

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 :)

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 :)