feeling empty, wanting more

I wake up and stumble through my day and sleep. My life is on repeat. I find it empty I just want more. I hunt for jobs most of the time knowing I could do them if society was not so stupid. Society expects smiles, 24/7 happiness. When you are in pain, sad, mad they want you to lie. They ask how you are and just want you to reply with good. They do not want to here about your day nor do they care how good or bad your life is. God forbid you tell them you are not ok and inconvenience them with your sorrows. I do my best to hide my pain from my son. I try to wait for sleep until I know he is sleeping. This is because I cry in my sleep. When I am asleep I cannot hide the pain I am in. He does not need to worry about me. I want to help support us. Many things I am capable of require excessive breaks and take a long time. I surround myself with people like me. I do this because when I am around people who are not in chronic pain they try to make me feel better. They try to pump me up or relate to me. They mean well I am sure but it really does not help. I am left hating myself for not "doing enough" or "limiting myself". I can assure you I always push my limits. People who are "able bodied" do not see this because to them a load of laundry does not get done due to laziness. For us though things do not get done because we ran out of steam or pain stopped us. Even writing this has become hard. Now that I have made you thoroughly bored  I thought I would share that I cut my sons hair.

Trying to conform

In order to accomplish something anything really... I have moved in with my aunt to be close to my dad. Hopefully I can get somewhere this way. I am afraid of the pain in my arms because I recognize it to be nerve damage. I use my arms a lot and cannot imagine them being like my legs. I am doing what I can as fast as I can to get treated but it seems like a lot to me. I suppose the fact the I am no where is my fault. I try really hard and get tired of people acting like I do not try hard enough. I get tired of being told what to do and how to do it when it comes to my son. I am in an extensive amount of pain and because I hide it to the best of my ability people refuse to take my word for it. I do not whine and cry because my pain is my pain and I refuse to let it be an annoyance to those around me. This is probably why people do not understand I am not sure how to make them understand either. I assume I will sort it out.

do or do not

Everyday like many others I am faced with things I have a hard time doing. For me leaning over to grab something can be a huge mistake or closing my eyes in the shower could lead to leaning forward. I get scared when I do really simple things but I try hard to not allow that to stop me. I whine and complain a lot and I know I should not. I feel really bad when I ask for help and sometimes get upset when I cannot get help. I know it is not the right way or the best way to handle things. It is really easy to fall into the self pity train since so much has changed so fast. I went from being an able bodied, super confident, capable female to feeling like I cannot have any alone time. Although to be honest being alone scares me and makes it hard for my brain to know what to do. I tell myself at least 100 times a day that I am ok and there is not much I need to do. My brain says I need to be doing something all the time to be productive. (being productive can be laughable for me) I make myself clean, budget, attempt school, and generally try to be a human without the help of other humans. A few times I have fallen and had to call for help. When I have I often get the question "why did you not just ask for help before you fell?" to which I rarely have an answer. I suppose I do things that lead to falling because at 27 I really do not want to have to ask for help all the time. I have seen this to be a common thing as people age they need more and more help and instead of asking they test the boundaries. Mostly because let's face it no one wants to not be able. I remember seeing older people nod off and I would think "must be nice to be able to just nod off" now I nod off and I get upset because I lose time and it is not ok. I have to learn to accept all these things even though I feel like a massive failure who never accomplished anything in the 9 years I have been an adult. It is like someone decided since I was not successful soon enough they would just stop it in it's tracks. I look up at the glass ceiling and I cry as quietly as I can screaming in my head that I know who I am and this is not her. I see me and I know I am not looking at me. Yet each day I wake up and legs burning I sit at the edge of the bed and I tell myself do or do not...there is no try.

MRI results

so on the 19th which was my birthday I went to my follow up and I learned nothing new. I need a neurologist for all of the actual info. However, I was given a few medications to make my life easier. I no take meds twice a day for my complex migraines and my nerve pain. I take medicine also for my twitching or spasms. Unfortunately they all make me tired as well. I am also going through the potential loss of my mate right now...it is really hard for me I feel like I am grasping at straws. I hate to be alone...and yet I often am alone to please people or because people can't handle me. I get mad for no reason or I over react an yell even when I am not upset. I do not understand much of what I say, think, or do. I am trying to figure things out. Like how can I be an actual part of society, how can I make some form of income. The issue is I am unreliable....sometimes I am awake at 6 am and sometimes I just cannot seem to get up. Then another issue is I have a hard time sitting for too long or standing for too long. so I watch other people work and sometimes I think I can work or do something and then I am reminded that I just cannot do the job good or bad, easy or hard. I get so desperate for a job I have been to the good will. I know I cannot work I just feel bad because I feel like a bum. This feeling often makes me do more than I should. The next day I hurt I'm tired and really useless. I cannot work for even an hour straight without being tired or in pain to the point that I cannot keep moving. I am doing my best to work with what I have for as long as I can. I look at my son and I feel like a bad mommy... Even when he insists I am a good mommy. I look at my family and feel like I make a bad sister/daughter. I know better but somehow knowing is not enough. I want to tell you guys things are better...I want to tell you guys I am headed for a better life...I want to be soo much different no one spend their child hood thinking they want to deal with chronic pain or chronic illness. I look in the mirror and feel like I am nothing. I feel useless.

I recently buzzed my hair...

How my chronic illness affects you

Lately I have been noticing that my illness isn't just about me. It affects those close to me but it also has an affect on other people who don't even know anything about me. I get asked all the time if
I am actually sick or if I really need the cart I am in. People pass me quickly sometimes almost knocking me over because I am slow. I cannot for the life of me control my emotions and paranoia and so I get upset and I yell whether I mean it. I cry for no reason so people think they hurt me whether they have or not. My head is so hard to navigate. I feel like because I can do somethings I am crazy but then I am quickly reminded it is not all in my head. I made shirts I would like to order a few to wear when I go out but I haven't.

I am just now aware that I spelled affects wrong and to be honest I am not sure which is correct. I know I was not always like this and every day I wake up less myself.

Home school and Home school

So, I am in school as I believe I have mentioned before. I have an AA in business and I have 4 more classes till I have a BS in Medical Administration.  It can be really challenging because understanding what I hear and read is often difficult. My son is also home schooled. This can be difficult and some people become perplexed that I am willing to do this. I have a lot of help and my son does not like being away from me. We went to sea-world for a field trip. This is another good reason him and I are home schooled. It gives us a freedom to spend time together. Real talk: (I'm scared one day I won't be able to do these things. As it is I had to use one of those motorized carts.) He had a blast and it was nice to watch him enjoy himself. I took a lot of pictures and at the end of the day Auron, Geega, and I were more than done. I felt like I had walked the whole day. I enjoyed it though. As for my school even though it is hard I do it in hopes that the VA will pay me due to my GI bill which they rarely do. I will be done soon though. I love being able to spend all this time with my son and watching him learn. sharing his milestones with other people.

Pains and Wonky feelings

So, you all know where it started. Now lets talk about how I got to this point from there. I was told the most important thing for me to do was walk and stick to my huge list of doctor appointments filled with specialists who all had their own Idea of what was wrong with me. They all wanted to run a lot of tests. I would get weird pains and I thought I could not feel my legs or feet but that is an inaccurate way to describe it as I learned more about what was going on, I learned what I was actually experiencing is called loss of sensation. My legs and lower chest felt like I had ran miles. Or that I had attempted to go upstream in an icy cold spring. I had a hard time sleeping but whether I slept or not I was always tired. Then pain in my legs was often excessive. I have shocked myself in the past quite a bit and each time I felt it unnecessary to tell an adult. Of course there are the small things like zapping my tongue with a nine volt battery. I also however had a curious mind beyond that. I looked into a light socket of a lamp and saw something in it. In the back of my mind I knew not to reach in. I thought though what will happen I mean what is the worst that will happen? Could it really be as bad as people make it sound? I stuck my finger in as far as it would go and yanked back. It hurt. Not too bad though I had lived after all. The next time I was plugging in my Jesus night light in the dark. I thought I was smart I reached out palm facing the outlet to get an idea of where the actual plug was.  As I plugged it in though I stuck the tip of my finger in the whole. It of course shocked me It was worse than the light socket but again I lived. The third time and last time I will mention my shocking experiences (even though trust there were more) I was a gamer and one of my favorite games was crash bandicoot. When you see an electric fence in game it is surrounded by blue static. I was young so I assumed this was a fact. I was told by a babysitter that a fence was electric and not to touch it. I looked at it and the animals behind it. I thought "how could they put an electric fence around animals?" "wouldn't the animals get shocked..." I did not know much about this sort of thing I was a military brat and had not been around livestock enough. I then thought "maybe it is turned off"  since I do not see any blue electricity. I reached out and I touched it. Oh man did it hurt. Then again I had lived so it was not too bad. The importance of these stories is that I felt an electric pulse running through my legs one I would describe as being much like the outlet so it was between the socket and the fence. Not too bad but enough to keep me from sleeping as it occurred most at night. (which I now experience in my arms as well and am told by medical professionals that this is known as neuropathy)  My headaches were awful and I was hot all the time. I told myself it was ok and I was just crazy. Boy was I wrong. I was a nanny at the time and walking started getting hard. Waking up became super hard. Lifting things got really hard. My back hurt all the time. I told myself I was normal and surely I could keep going. I found my job super hard and had a nice lady and her two children depending on me. I got help from my family so I wouldn't officially let anyone down. Of course I couldn't keep the job and I looked for one I might be able to manage...

me and the baby at Aunt Vikis

From the Top

Hey guys,
    I am hoping I will not make people bored. My name is Corrie. I am 26 years old and I have a 6 year old son.

Me and the baby before I changed my hair

I am creating this blog because even though I have an epic amount of support this journey is still hard. I am hoping that by sharing I will not only be able to express myself but I will also be able to help others in their journey. I have a lot wrong with me. Mentally I am sure not much is right and physically it seems a new part of me begins to fail each month. I was not always like this. So, where do we begin? Let's just start from the top. I grew up in a pretty loving home my parents did divorce but it was not horrible. I was always so clumsy... broken bones, burns, cuts, and if it's sharp and on the ground you bet I will find it. I don't remember the pain. From any of those incidents. What I do remember is being rushed to the ER and surrounded by people I loved. I figured I would grow out of being clumsy and figured it was all normal. When I was 6 I was playing at a construction site while my dad was working. I slipped and hit my back on a rock. I peed myself from the fall... I had my friend Justine walk home with me and I never told my dad. I had back pain after that and still have back pain. I am not entirely sure if my herniated disk is related to that...but I have a herniated disk. I remember being obsessed with babies. I always wanted as many of them as I could have and I looked up to my Memaw for her brilliant mothering skills. I was smart growing up I hit a few gifted classes and got noticed by Johns Hopkins University when I was in elementary school. As I got older I was punctual, caring, and well learned in Adulting. Or so I thought. I worked hard on my credit and did my best to ensure that things would go well in as many controllable aspects of my life. I had my son in 2011 when I was 20. It was a rocky start but I was overjoyed by his existence. I managed to get My Associates of Arts in Business.  I am now struggling through my Bachelors of Science in medical administration. Why is it all the sudden a struggle? Well about three or four years ago I started getting tired much more than normal. I also began having crazy periods. then two or three years ago I started losing sensation in my feet which is now working its way to my chest. My face went numb on the left side and I could not control the muscles in my face. I went to the ER they thought maybe I had some sort of stroke. I was there for four days. they ran all kinds of tests. At the end of it they said there was a high chance I had Multiple Sclerosis as they found lesions during an MRI. The issue with my face was most likely from complicated Migraines. At least that is where it all started.