This past year has been really difficult for me. POTS and depression took over my life and I pretty much stopped living it all together. I haven't been writing here because I often feel as though I am complaining and I often forget the positive feed back I get from people who have read this blog and have either been encouraged that they are not alone or feel closer to me knowing what I got through daily. Personally, I write to vent. Writing is an amazing outlet for me and I often learn about my sub-conscious with paying a therapist bill. So here goes.

     Although I have not been clinically diagnosed I believe I am clinically depressed. It is so easy to be down when you are sick and so difficult to find the beauty of life when you are not able to go out and live it. I have been sick for almost 6 years. 6 months was the initial time frame doctors gave me. Doctors can be wrong! This past summer was probably the worst summer I've ever had. In the past summers have been the one time my POTS is somewhat under control but for what ever reason this last summer was different.
     Going into the new school year I was determined to take care of myself in every way possible, and so far that has worked out pretty well for me.  I have mentioned in past posts that doctors believe I will go into remission in my early twenties but that I honestly never thought that was going to happen for me (I tend to believe no hope is better than unfulfilled hope...and I would know). This past month I turned 21. I am now in my early twenties and although I have no idea what life would look like for me without POTS I sub-consciously let myself believe that recovery was possible.
     As I mentioned above, I have been doing quite a bit better this last month and even though I have trained myself to be prepared for that eminent relapse this time I started to believe that this might be the beginning of the end. I think the biggest factor that has let me believe this taboo concept once again is the fact that my body now seems to be requiring less sleep. When your body is sick you constantly feel exhausted and sleep for as long as possible (which is pretty much what I've been doing for the last 6 years) but only recently my body has been requiring less sleep. To me this screams out that it is no longer fighting, or has at least taken a break, but I never dared to say the words out loud.
     Yesterday when my father came to visit me at school I told him of this new development in my health situation and even while I spoke I knew it was too good to be true. This morning, and most of the day actually, has been one of the worst POTS days I have had in awhile (granted it is not as bad as it has been in the past but non the less it has taken my hope and my spirit back toward the whole of depression). I don't what God is trying to do in my life (or maybe what He's allowing to happen in my life) but I do know He is not a sadistic God.
     I may never fully understand POTS and I may never find another person on Earth who truly understands me but I do know a few things; God understands POTS, God understand ME, and God is smitten with me. When is really comes down to it, that's all I need to know.

My anit-POTS...

     I finally tell you how I really feel and this is how you treat me? What have I ever done to you? I get it. Okay, I get that you havn't been nearly as horrible to me as you were in the beginning but did you really have to show me what I've been missing? I havn't felt like that in years. I can't take it. You went too far this time. Are you going to let me go to class today? Are you going to let me get through this week with little influence from you?
     I need seperation. I need to be able to focus on school and my music. I need you to let me do that. You can have everything else just give me my music. I don't know if I've told you this but music relieves the pain you cause. It takes me away and lets me feel other emotions besides the anger you project upon me. It's beautiful, complicated, easy, vulnerable, outspoken, and exactly what I need to find a way to get over you. I've written a few songs based on our time together but I need to branch out from you. You are not my life. My identity is not found in you and you do not define my music.
     God will do great things through me whether you allow Him too or not. You have no say in my life anymore.

Dear POTS...

     This has been a long time coming but there's something I need to finally say. I hate you. I hate that you hold me back. I hate how sick you make me feel. I hate how you always choose the wrong times to show up in my life. I hate how easy it is for me to say your name. I hate how you stay invisible to the outside world. I hate that no one can see you or see what you're doing to me. I hate that I can't explain you. I hate that I can't understand you. I hate how stupid you make me look. I hate that I can't walk through the mall with my friends because I'm afraid you're going to pull me down. I hate the looks I get when people around me think I'm faking you. I hate that you make it hard for me to concentrate. I hate how you messed up high school for me...and volleyball, and the gift of being social. I hate that the contacts in my phone consist of doctors. I hate that you demand medicine that my insurance company will no longer cover. I hate almost blacking out every time I stand up. I hate that standing is now a chore. I hate that I have to plan my day around you. I hate how you limit me. I hate that no one can see my pain. I hate being the sick girl. I hate that walking is to my body what running a marathon is to a healthy person. I hate that getting excited and laughing can make you worse. I hate regulating my feelings so that when you hurt me I don't burst into tears and when something good happens I have to calm myself so you won't attack me. I hate that you make it hard to sleep. I hate the pills, the stockings, the loss of satisfaction in eating, and the sloshy fish tank I have become. I hate acting like I'm fine but I can't bare to bring others into my pain...I makes it real.
     I know that good has to come from you but I don't have to pretend I'm okay with having you around. You've hurt me. You've amplified my need to be alone and left me alienating everyone around me. We have our ups and downs but when I'm down I never feel like getting back up. I feel like you've taken my life in many ways but what sends me over the edge is that you'll probably take my kids lives as well. You make everything difficult. Eating, walking, standing, sitting, reading, studying, breathing, thinking, writing, singing, talking...will you ever stop? Can you ever stop? I don't remember what it's like without you. I don't remember taking all these things for granted. We've been together 5 years. They told me 6 months, then 1 year, then 2, then 3. No one understands this thing that you're doing to me. Why don't you knock me out? What's stopping you? Maybe people would understand if you took you're job more serious. Maybe they would be able to see the effect you have on me. Maybe I would have been diagnosed in a few months rather than 3 years. I hate you so much. I would scream if I thought it would do any good but it just amplifies my pain. I hate you but most of all I hate that I love you.
     I hate that it brings me some kind of weird satisfaction to know that I'm different. To know that I have an excuse. I hate that through you I hold myself back. I and no one else. I hate that I use you. I hate that I let myself down because of you. I hate that when I talk about you I feel some kind of weird satisfaction. I hate that I think you're cool. I hate that I struggle finding my identity without you. I hate that I love the drama. I hate the way you give me some sort of power. I hate that I have a blog devoted to you. I hate that I want people to read it. I hate that I distance myself because of you but at the same time I want people to know me...all of me...even you. I hate how self conscious I feel because of you. I hate that I care what people think of me because you make me look so foreign.
     I wish you would stop. I wish you would just go away but at the same time I wonder what I would do with myself once you're gone. Who would I be? You've changed me. For good or bad, you've changed me and there's no going back. There's no such thing as normal. I can never be normal again. Even if you leave you never promise you won't come back. What if I can't take the suspense? I'm finally starting to accept you and I'm realizing that being with you is like being in an abusive relationship. You've got a hold on me. Even if you left me alone I might not survive without you. I can't take the beating but I can't imagine life without you. I don't think life can exist without you. Everyone has their opinions on how I should handle you but honestly I don't think any of it really matters. Can I be anything with you? Should I stop trying? I hate the questions you make me ask myself everyday. I hate you but I love the way you lie.

I'm faulty...

     Woke up this morning surprisingly awake. Not energized but ready to get up and get ready for class. I started out the day feeling pretty good. I was only slightly nauseated and I was in the beginning stages of a sore throat. My day quickly started to decline as I sat in class and my nausea started to overwhelm me. I made it through one class (which was big as it has been a few days since I have been to class), chapel, and then decided to skip my music history class as I felt like I was going to pass out at any moment. I went straight to my dorm, got in bed, and turned on my electric heater mattress pad (thanks Grandma). I slept for about 4 hours. I felt so much better after that amazing nap =]
     Tomorrow me and some of my new friends are heading downtown for some photo shoot fun! I am super excited and can't wait to try out my new camera but I do have some concerns. What if I get sick while we're out tomorrow? What am I supposed to say? What am I ever supposed to say? I know talking about POTS is inevitable but I always dread that conversation. What to say, what not to say...what will they actually understand? I hate being the depressing one of the group but I'm sure if the subject doesn't come up tomorrow it will soon enough. When that day comes all I can do is smile and explain that I'm faulty =]

...my nightmare just came true.

    Today was another potsy day. I have tried to keep my thoughts from going straight to the idea that I'm having another 'relap' of sorts but it still finds it way. As a music major I have to practice singing for at least 7 hours a week which gets quite difficult when I am in nauseated/passing out mode. Maybe God is beginning to show me I need to pick a new career. None of my friends here really understand POTS yet and I'm almost dreading those conversations. How many more times will I have to explain my unexplainable illness?
    I don't mind talking about it, it's just that my inability to know how much information is too much information coupled with my ability to talk about this life changing illness like I'm explaining the Pythagorean theorem equals one uncomfortable conversation. Usually I get the whole "Oh my word, that's horrible" and me being who I am along with being able to distance myself from POTS while talking about it usually answers back "It's not that bad". I don't want people to pity me and I hate being the depressing one in the group, no one likes to be the one to bring an entire conversation to a stand still and complete silence, but I do want them to know how it really affects me. Granted my POTS is not as bad as some and I do have good days but the fact is that the majority of my days are not great and POTS really isn't fun at all.
    I've tried so hard to be okay with having POTS and in theory I am. I oddly like the fact that I have a relatively rare illness, or rather I like being different but when people give you the 'that-girl-must-be-terminally-ill' look POTS gets real old real fast. I don't remember what it was like to be normal. What it was like before POTS. And I'm finally beginning to realize that even if this illness decides to go into remission it can come back at anytime without warning. So maybe going back to the time when I expected to have POTS for life is really the safer option than hoping to live without it. I had finally begun to believe that maybe I would only have a few years left of this insanity but the fact of the matter is I have Postural Orthostatic Tachycardia Syndrome and I need to forget about getting better and continue to learn how to cope...
    Who knew that evil doctor's words that drove both me and my father to tears would be said by me almost 5 years later. Learn to cope, learn to cope, learn to cope...my nightmare just came true.

Bump in the road...

     School has been going really well so far. I'm starting to struggle to stay focused on my school work but I love being in the classroom once again. My POTS has been doing pretty good overall. I've had some relatively bad days but for the most parts it has come and gone in waves through out the day.
     I just recently discovered while trying to refill a perscription for Zofran that my new insurance company has decided to stop covering this amazing drug. To say I was upset would have been an understatment. This single drug quite literally got me through school this past year and it scares me to think that I might be headed down that oh too familiar path to unmanagable nausea. Dispite the dilligent work of my mother and doctor's office the insurance company has not budged from their desision to uproot my life.
     I am currently in contact with both my POTS doctor and my primary care physician to work on possibly finding a different drug that can manage my nausea but it's not looking to good at this point. I have been taking ginger root capsules which have been known to treat nausea. It's hard to tell at this point whether or not they are actually working but I hope and pray they will relieve me from my nausea. Although this has been quite stressful and frusterating I have resolved to leave the results up to God and let Him figure out this mess modern insurance has created. I know there must be a reason for this inconvienece and I am anxious for God to let me in on the secret.
   

It's been a long time...

     Tomorrow I move into my dorm at Cornerstone University (online classes, although necessary, did not work for me). I am excited to be doing well enough physically to attend a University and I am super excited to finally be able to call myself a music major. Yea!! =] I am very nervous about making this big change but I am excited for all the adventures I know are just around the corner...and music is in the title of most of my classes so that is totally cool.
     I am mostly packed, just a few more things to go and I will be ready to move into CU. I must mention that I hate moving. I love packing and planning but the whole moving my stuff, caring heavy boxes, and unpacking everything is not at all fun. Ironic since that's basically what I've been doing the past few months traveling between my parents house and grandma's and friends...it's all very exhausing.
     I still have my job at JCPenney Portrait Studio so I am super psyced about that and blessed to be able to continue working doing something I love. My co-workers and boss' are also amazing! I love my job =]
     I need to finish packing but I will write soon to update you on CU adventures.