I want to try and start writing on a regular basis because I am trying to hone my writing skills! So, here we go....

I have been on a very crazy roller coaster ride, recently.... Well, not just recently, my whole life and I realize that is life. However, for me it has been quite a bit more than one would expect. I think though, that there must be a reason for this and intend to keep going until I find this reason. When I do find out, I will let you know. I am hoping it is because I am meant to do something important!

Most recently, I have discovered a lot about myself, that I didn't know before... Some of it is good and some of it may not be the best, but it is good that I can acknowledge these things. The first step and the hardest for me has been to accept these things and then decide that, there are some things that I want to change. Up until this point, I have been fighting accepting my illness and the limits it puts on me. I was refusing to accept that those limits even existed and was hurting myself physically and even emotionally because of that! It was not until this most recent hospitalization, that was supposed to just be a routine chest port placement.... that I put on the brakes full stop and something both amazing and seemingly tragic occurred! I say that it was something amazing because of what it has led to.... However, it definitely did not feel or seem amazing at all, which is why I said it was seemingly tragic.

Life is full of opposites, such as tragic and amazing.... I am learning though, that those can often be interchangeable, depending on how you look at it. Let's say for instance, you are an artist and you have this seemingly perfect masterpiece and then a little kid comes along and squirts some paint on it, that you didn't want there. Well, you could say that is awful, that the painting is ruined and that no one will by it. However, someone else could come along and say wow how artistic and amazing, how did you do that? So, that may seem a silly comparison, to something bigger, that we deem truly tragic. Though, I have began to wonder, is it really that different? I mean, it is kind of like the glass half full argument... So, that is what I have been learning this last week and a half....

Now maybe it is unclear where I am going with this, but what I am trying to say is, this last week and a half was like a masterpiece that got paint all over it, where it didn't appear to one person to belong. I was looking at what was happening to me, as that artist in my example was.... I have a tendency to look at everything in black in white and think of everything as good and bad. So, this hospital stay and subsequent setback, I looked at as such a horrible and even tragic type thing. However, it really was a blessing in disguise! Some people closest to me, stayed in contact with me throughout everything, even when I was very drugged and lost two days of my memory. I do not recall what they said the first two days, but I imagine it was very similar to what they told me when I was more coherent. Which was, that I needed to stop fighting and putting up resistance, to those that are trying to help me. They told me that I needed to rest and that I needed to really start to cooperate and do what is necessary for my health.


Now, that sounds simple enough, right? Well, it isn't for me and in my mind, I thought they were telling me to give up and stop fighting. I have always been a fighter, partly out of personality and partly out of necessity. I grew up in an environment where, if you didn't fight, then you were totally screwed and with my illness I had to be a fighter. It seemed, as if the world around me, was intent on making sure that I got nothing without a very long and drawn out fight! So, naturally when I thought they were telling me to stop fighting, I was like what? I told them that I couldn't and I continued to be difficult and resistant throughout the entire hospital stay, which ended up causing me deep internal pain, as well as physical pain and increased symptoms. I lost more function in my legs and I had blood levels that were not good, but treatable. I am still working on that stuff, but I was so stuck on the fact that, I was sicker than I was when I came in, that I couldn't focus on anything else. My whole day was thinking about what had happened and why and how I needed to get out of there and go home. I couldn't stop thinking about the things I needed to get done in the apartment and otherwise.

It being Easter weekend didn't help any, nor did watching my roommate whom I got to know code right in front of me. I went home quite shaken up on Monday night and quite discouraged, feeling as if I just couldn't take anymore! I got brought back on a stretcher and I was on my own for the most part after that. So, I figured out how to deal with things, well until my wheel chair nearly caught fire and then I was freaking out about that. My only thoughts kept being what the hell do I do and why is everything so hard and feeling so deeply in pain because everything appeared to be falling apart. I mean at the time and even now, I look back and I think like really, seriously, come on now, let me have a break for once! I know that everyone feels like this at times, but it seemed to me that I was just getting toppled and I couldn't handle it. So, I was in survival mode, which has been a fairly constant thing in my life, up until the last year, year and a half, it never bothered me. Survival mode, is inherent in all of us, but mine was constantly turned on and often still is because of my PTSD.

So, I ended up figuring that it was only a matter of time before I just totally lost it and was not quite sure, that I hadn't all ready. I had a session with my counselor and it was a very intense and painful session.... I ended up crying my eyes out, which I don't do and we had kind of clashed a bit during the session, but we talked through it and cleared the air. The main thing we talked about was my black and white thinking and my tendency to go right to something catastrophic. Here is where it should all tie in, if I am conveying this correctly.... So at the end of the session he says to me, "We still friends?" and I said yes and we said good bye etc.... The following day, I had CNA Services in, I had gotten a scheduled delivery for my custom rehab wheel chair, was putting a plan together to get home P.T. and O.T., got clean for the first time in 6 days and then some. Plus I found out that I would have visitors on Saturday. So, now looking back I think about how I expected everything to go wrong and I automatically thought all bad things.... Then I see how wait if that hadn't of happened then this better thing wouldn't have happened. So, like when they kept me in the hospital, when they weren't supposed to, if they hadn't, my blood levels wouldn't have been checked and I could have gotten even more dangerously ill! Then the same concept with the CNA Services, that expedited that for me, then if that wheel chair hadn't been so crappy, I might have taken this one for granted. If I hadn't have lost my P.T./O.T. because I am too sick, then I might not have the chance to get home P.T. and O.T. in here to help me and help me figure out ways to be able to do things safely around the house. Also, I would have never met a beautiful woman, my roommate, who was fighting her own battle and witnessed a miracle, when she came back to life! I wouldn't have come to the realization that I needed to slow down for now, so that in the long run I can get better! I could go on, but I think you get it.

So, my point here is, that if I had tried looking at things as happening for a reason and being beautiful in their own way, but still recognized the challenges I was facing. Then, I could have saved myself and others from the amount of pain that I and they experienced. I could have prevented myself and them from becoming so frustrated. I could have just used Radical Acceptance(if you don't know about it, you should look it up) and then accepted the situation, not tried to "fix" it or change it and could have been able to stay relatively calm. My therapist's website, quotes someone on saying that "The only conflict you will ever have is the one inside yourself.". It is totally true and I am learning that and I am learning how to deal with things better everyday! This has taught me to understand the conflicting feelings, thoughts and desires I experience so often. I am trying to learn not to judge my experience, but observe it and then figure out what needs to be changed. I have a tendency to want to change everything right away and focus on the bad things. However, if I could not do that as much, then my life would not only be easier, but I think I would make less mistakes. I wouldn't be so stuck on being upset about something, that I then act out my feelings and make another mistake. I need to start looking at things as all steps, all lessons and all necessary and beautiful experiences, whether it is "good" or "bad", 'tragic" or "amazing"!

How can we really put things into such rigid categories? I mean, like this experience, I could say how bad it was and believe me, I have vented about it quite a bit. However, if I really think about it clearly and calmly, it was actually a BEAUTIFUL EXPERIENCE! It wasn't beautiful because of the "bad", but it was beautiful because it was a part of my experience and because I learned from it! It was beautiful because the experience belongs to me and everyone involved and we all were interconnected during it, with all this amazing stuff going on! It opened up doors, that I thought were never going to be opened! I mean that in terms of services and other things coming into place, but in terms of mentally too.... It actually opened up doors for me mentally and intellectually that I didn't even know were there! I could say that my legs getting worse is tragic or some other negative term, but I prefer to say it was tragically beautiful! Now don't get me wrong there, I hope that it reverses itself, but the beautiful thing here is that, I know I can handle it if it doesn't.... I am learning not to constantly fight things or constantly over analyze things, in hopes it will change them. I now am learning life us its twists and turns and ups and downs. Yes for me, it seems sometimes more than others, but it is all relative! I get a lot of questions about how I deal/cope with everything....

I deal the same way someone deals when there keys get locked in their car, I freak out and then laugh about it later and learn not to leave my keys in the car, but don't over obsess that it will happen again. I did not always deal so well and don't still, but who does? So, anyhow, in closing, the beautiful thing that I have learned from everything is, that not everything is black and white, in fact pretty much nothing is. I have also learned that I don't have control over everything and in fact have very little control on a large scale.... So as scary as this is for me, I am learning that and learning that it is okay and that I can rest/take a break sometimes. I am learning also, that I am not being punished, but at least when I am in  a good mood, I actually feel privileged to be able to have these experiences! I am learning to let go a little and learning to slow down and learning that I can do this, even if I have a melt down or a bad day or a bad month or year etc.... It feels good to know that I am growing and in some ways I actually feel blessed that through being disabled I have the time to devote on my mental health and growth because I would not have had that chance otherwise. It has given me tremendous resiliency as well and helped me through the Hell I experienced growing up in an abusive home for all most 20 years and then starting from scratch back in August! I know that I would not be here otherwise, so I try my best to look at it that way! I don't know if this makes sense, but this is what came out.....

50K For Awareness Kick Off!

So today is the kick off of 50K for Awareness, so this is my first post! There that was 15 words already, oh there is some more lol. Anyway, I am jst going to jump right in and talk about random stuff, some may be poetry, haven't decided yet, we shall see. So I just want to say I have some awesome friends, thanks guy, theses past few days, well more like months have sucked, but I have you guys, so that makes it much more bearable, HUGS to all you Awesome people out there, love ya guys! I really can't thank you enough! We have shared laughs, tears, smiles, pain etc. All the days I have been alone, I haven't been totally alone because of you guys! My Birthday didn't suck, thanks to you guys and I am getting through this rough time thanks to you guys' help! I am taking a big step next week, thanks partly to my friends encouragement and myself wanting to do so.I just needed a little push, like when you are a kid on the swingset and you can't get high enough so you need a little push or when your friend is yelling at you to jump off, but you are scared, that is a better anology lol, I wonder if lol counts as a word, huh. I have been writing a lot of poetry recently, but I don't share it too much, if it wasn't for the fact anyone could see the blog I would put some up right now, but I have to decide if I want the whole world to have access to it or not before I would do that. Probably not though. I had went like 2 years without writing any poetry and the all the suden like a month ago or so I justed started writing in the middle of a post on facebook and now my ability to write it  is back it seems. Halloween was good last night, I handed out candy sitting outside in the freezing cold for like 2 hours, my nephew who lives with me gave me a bunch of candy the police station gave him, he got a bunch of special stuff because he lways goes and visists the staff there cause my dad worked mantinence there and is now Animal Control which is affilated with the police station, but anyway I made out pretty well! I passed out tho from eating chocolate, pots and chocolate doesn't mix for me. I did it again today and passed out again, so trying not to do it again lol. I don't like the fact Halloween has to be a holiday associated with evil, I am religious, so it bothers me, I wish we could make a new one where it was under God's name and called it something different and was done during the day. I made a purple ducktape bag the other day, it came out pretty cool, I will have to take pictures of it, but I want to get more ducktape if someone would get me some, so I could make stuff like wallets, other bags and tc., I wonder if etc. is a word, anyway, so yeah I would love to make more ducktape stuff, I hope everyone is doing welll, that is all I am going to say until tomorrow, if anyone else is doing 50K For Awareness GOOD LUCK TO YOU ALL! HUGE PURPLE STRIPEY ZEBRA HUGS, Yeah I know that lat part made no sense, but all well, love ya guys!

I am an Astronaut!

A lot of kids dream of being an astronaut, now that I know I am an astronaut, I don't think kids should dream to be one. I was listening to a song ealier that explains it all, no one would want to be an astronaut if they thought it would feel like what this song explains. Ir is all metaphorically speaking of course, lol, no I am not crazy, anyway, I will post the song here for yuou, listen for yourself, this is my favorite band I havebeen listening to for 6 or 7 years now!

Update

Sorry haven't been on much, most recently, I had a pretty good birthday thanks to my online potsie and eds buddies who talked to me and sent me gifts on my bday and one of those gifts was a bp machine amongst other things including a beautiful Bible which I love, some little notebbooks a ouple llittle  craft kits, two life and God books ad earplugs and othe things I love it all.. I am too tired to list everything I got, but I also got floewers fom one, a box of like kid bday stuff that made me laugh and I playe dwith it, I am still a kid in some wasy ol, a box of food way befoee my bday and a card for my early bday presentm a few other cards, a box with art stuff and a bear, a new keyboad haven't disovered how to install yet lol. Okay ataully that is pretty muh everything haha  I am so thankful to all you guys that sent me stuff, love ya all HUGS. I have finally started home Ocupational and Physical therapy. I have a very nice physial therapist and an awesome Ocupational therapist, I say awesome ot beause she has said she would help me find a way to get out of the house, like get housing, disability, food staqmps and medial equipment and also said she woulsd help retrain my body to do Ativities of sdiaily living again and een be able to cook whih I never have been able to.  Also I have been getting my cnas and nurses. I like my na too, she is nice. That is the good news. The bad news is, mydoctor is dropping me, because his dad got in a fight with my Mom so to punish her he is making his son rop me, whih apparently is allowed beausethe fathe oholds the voting rights of the pratie and the son who is my doc said he didn't want to drop me. I will now have to find a new do, but no other do I ould find in the state would take someone with my conditions and on my meds, especailly one of my meds and I am not supposed to go off that one and may be on it the rest of my life.  Also my beautiful freind Alexa passed away, so I am mouning he loss, but going to try and honor he by fighting fo  people with EDS and POtTS etc. RIP ALEXA! She is an amazing Angel now, she an fly free! Throughout all this it has been rough and more going on, but this is some of the moe recent main stuff. I am staying strong and just getting through, hoping soon I an do more then just survibve, but I am glad to be alive desite  all of this, some people say they want God to just take them from it al and I don't right now I want to live and see God when I am done livving my life and right now I am not even close! I will hoepfully tell you guys moe soon! LOVE AND HUGS TO YOU ALL!

My First Video Ever!

I finaly figured out how to make a video, I relized that you could use the webcam to make videos, I am so happy! YAY

All In All, A Good Night!

Hey guys, I had a pretty rough ay, followed by a petty good night. Tonight I had my fist video call on facebook and first time ever using a webcam.  My video call was with my newestpal Hannah and hope to have more video calls with her an other pals, so if you want to ave a video call with me let me know. I have skype as well, I may be able to figure it out the rest of the way and be able to udse it, so if you have skype we can talk on there Before y video call I was a little dow so I wrote this poem:

Do you ever feel alone in a crowded room?,
Do you ever feel a sense of impending doom?,
Do you ever feel like you are going to die?,
Do you ever fel like all you can do is cry?,

Cause I Do!

Do you ever want to give up?,
Do you hate it when no one says, ( "Hey what's up?")?,
Do you ever feel like you don't belong?,
Do you ever feel like you can't come along?,

Cause I Do!

Do you ever feel lke breaking down?,
Do you ever feel like you are about to drown?,
Do you eve feel out of place?,
Doyou ever feel like a huge disgrace?,

Cause I Do!,
Oh, Yes I Do!

So how about you?,
Well Do You?
I know it is a little depressing, but sometimes it is good to get those feelings out Anyway, after my video call I wa very happy and feeling a little bit better emotionally, which is always nice. A weid thing happened tho, right befoe the video call I got an adrenaine rush and potsie and felt nervous and as soon as I got into the call it went away It mus have either been a fluke or because I haven't been talking to people out loud, never mind face to face, so if we do video chat and I seem nervous bare with me! I was kinda embarrassed about my appearance during the video call too, so please don't mind that either if we are chatting. I also had a few great chats just on regular facebook chat with other potsie/eds fiends, so thanks to all  of you! Last night and into the early morning this morning I learnt a lot about myself through one particular person I was chatting with.  So that is good and I have been thinking a lot about that, I wish I was more comfortable to elaborate, it mostly has to do with stuff from my childhood and teen years, although technically I am still a teen, I am considered legally an adult, but anyway, I love all you guys so much and I pray for us all every night, which brings me to a request I have, a few of my friends have had it really rough and would like you to either pray for them or send them good thoughts/vibes and spoons or all three, their names are Milly, Nichole and Alexa, I usually wouldn't mention names, but since I control who knows  about my blog, I feel it is safe and okay to do so, I hope no  one minds if you do let me know and soy if it bothered you I will sop, I just really want to get prayers for my pals who need them! Okay Love and Hugs! Night!

Invisible Awarness

So  I  was too late doing this to give it to my friend to ost on the project she did for awareness, but I a going to do it now.

My name is Tonya, I am almost 19 years old, I have been sick since birth, I have EDS, POTS, Von Willebrands Disease, Acid Reflux, Reflex Symphatic Dystrophy, RLS, urinary and kidney touble, malnuritionment, vitamin deficiency, possible MCAD, Raynauds and Chiari, all being investigated as of right now. I suffer fom a variety of symptoms too long to list! I am bedidden as of right now and us a walker to get to the bathoom and to the kitchen. These diseases have cost me many things in life including my family and friends who just don't nderstand. However through Facebook Forums I have gotten myself new friends and the ones closest to my heart I consider family!I thank God for all of you guys, you are what gets me through each and eveyday and I can't possily expess how much I love you! I am glad God has given me the oortunity to meet you guys online and hoe one day to meet you in person! My goals i life are to make it back to college and become a doctor eventually, eigt now it seems impossible, but I am still holding out hope! I also want to meet an understanding guy who appreciates me for who I am and teats me well! I hoe to marysomeday and adopt children, I am  unfotunately most likely not able to have chldren of my own ut that's okay, there are plenty of children out there who need and deserve a loving home! As of right now I am trying to gain my independenc and live a good life!