Hospital stay and random thoughts!

My right arm felt like it was on fire and it was only getting worse. I was falling more and more. I knew I needed to be in the hospital. I packed a bag prepared to stay four days.When I got there paranoia set in. I felt so out of place. The doctor wanted to send me home. As the doctor and nurse came in with my discharge papers my arm flared up. The pain was bad enough to really make me cry. they gave me morphine. They gave me Toradol. They said I would be out. Nope I was still in pain. They moved me into observation. The next day they put me into MRI...told my son and his father I would be out in 15-20 min.

They had to scan my brain, neck, upper back, and lower back. with and without contrast. I arrive in the room and to be honest they try really hard to make it comfortable but if you have ever had an MRI you know it is not fun. They have me lay down. (mind you I have done this before and while it wasn't fun I just knew I would be fine.) I laid down they put ear plugs in, head phones on me, then foam to hold my head in place and finally on went the cage. Blankets were put over my body and I was handed this squeezable call button. She informed me I was going in and need to be as still as possible. In my headphones soft music played but she could also tell me when each picture would be taken and how long it would take. I could still hear The banging and clicking of the machine as the MRI took place. I felt different My brain was not it's usual "relax this needs to happen self" I began to panic in my head. I whimpered but I made it. After a good 45 minute she pulled me out and injected the contrast. then back in the tube I went. I had ripped the call ball off the plastic tube. After another 45 minutes she pulled me out and began taking everything off saying "you did well usually I have to give the patient time out but you powered through" she joked about me breaking the ball as she just popped it back on.

I was moved back into observation. They took more blood and did so through out my stay. I was told that the MRI showed and ms flare and was asked what medication I was on for ms.

The doctor was alarmed to hear about my struggles with trying to get a neurologist and informed me I would be moved to inpatient and would be put on a 5 day steroid treatment. I agreed and signed papers. They moved me and started treatment My sister was able to stay with me. I was placed on the fall risk list but was able to have my sister watch and help me to avoid the uncomfortable alarm. They started me also on a regimen of b12, d3, and one other b vitamin.  They informed me they were going to put me on a 3 day immune globulin iv therapy. so my total stay was extended to 10 days.  I had physical therapy which I detest but went through it anyway. They said I needed to allow people to help me and began assistance with everything. They were super worried about my fall risk. To the point where my biggest rebellion is going pee alone. They are sending me a walker to be honest I am not as scared of falling as the people around me are afraid of me falling if that makes sense. I am afraid in the shower. I get yelled at  anytime I try to do anything alone. I hate being a burden though. I hear it all the time that people know people with ms that have had it longer than me that behave better about it. While the doctor was worried about my condition he did tell me he has seen worse and that now is a good time to have ms because treatment is amazing. I know I need disability but there is always a tiny voice that says I'm fine I can do it. Then there are days where I can't do anything. like even typing or talking is next to impossible. on those days I wonder who even would hire me. I'm unreliable at best, I struggle with basic tasks. anyhow I'm home now I thought it would be great so far I'm manic and have an insatiable need to throw things away  and empty my life.I know this is ending funny but I'll post updates and thoughts later.

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.

Change

I am accepting that my life will change and that I need it to. It is not easy and I will make some hard choices. I will do things that are difficult. It will all pan out. I will keep some old things though... I have to plan better I think... or maybe I plan too much. I am not really sure but I do know I will be spending a lot more time in a doctors office...When I am done hopefully I will be more equipped to be more efficient and help my family. All I know is I am so sick of feeling useless. The funny thing is People around me are really shocked that this is even happening and that I am or have taken soo long to scrape myself up.To be honest I am just trying to get by. I need to get out of debt and get healthier. Knowing what I need is only half the battle. The rest will take time and real effort. On another note I found myself effected by both Irma and Harvey. If Jose hits VA i'll be effected by that one too... My vacation was not well planned but then I had no way to know hurricanes would be hitting left and right. I live in FL but was in Texas for Harvey, Then income was all but halted by Irma and soon I may have to deal with Jose and the other hurricanes that may hit FL so to be honest I am tired of these hurricanes.

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.

Follow the leader even in sickness

Growing up I was always so clumsy breaking or hurting myself in some way. As a result, I spent a lot of time in the hospital emergency room...when I was pregnant I ended up back home because I had trouble getting the care I needed. Once again my health is bringing me home. I feel bad  because I would like to care for myself. I also feel bad because as low maintenance as I try to be I always end up being high maintenance. Really high maintenance at this point. However, good leaders lead by example and when they cannot do so physically they can continue to lead from wherever they are emotionally. A long with these thoughts of leading I have been considering the position of the follower. A good leader knows they are nothing without their followers. Followers make the leader. they affect the leader and have more power really. As a follower it is important to remember you are important and that the leader only holds the position they hold to help the followers show their full potential. Followers must realize nothing in life is simple not even the leader has a stress free life. Leaders are no strangers to stress and behaving silly due to stress. Followers and leaders need to remember no question is silly. Confirming ones thoughts is a great way to prevent yourself from being silly. Any true leader will welcome questions. A leader that dislikes questions is faking their leadership...If a true leader is asked a question they cannot answer it is best they admit that they have no answer. I am unsure where I am in my life leader...follower...etc.

When u feel like a teenager again

This phrase is always regarded as a positive thing. Like to feel young again...or better.  For me it's not that at all. As a teenager I was always depressed an angry... I chased my boyfriend because I always felt like my world was ending. I didn't want it to end with me alone... I had a big fear of being alone. I feel like that now I feel like all I want before it ends is a place of my own where I can feel like I had a family. Its like my world is ending and I want something I can leave behind I can't leave things undone. So I woke up this morning my stomach felt like someone had forced acid into it...my legs were stiff like I had sat in the Indian position all night... I was up most of the night tossing and turning. Thinking I want to do what is best for my family but not knowing what to do trying to figure out what I could do even. Looking at bills but wanting a simple weekend...I am alone...but my mom stayed up with me at least until I let her know it was ok to leave me around 2 am....I feel so helpless...useless even...

Feeling Down

So I am feeling really gloomy today and I am not sure why. It was sudden too, like I was having a great day and now I am just really blah. I am trying to pack and I have new plans and I am really excited but for some reason I am ready to cry... I keep looking for a way out. I am on Twitch plus I noticed I did not give you guys a link to donation page. I could also be down because of the rain which brings me to this my friend started a go fund me.  I am hunting down videos of my son to try and catch up his youtube and I might start a blog about him as well I am just not sure yet. I kind of want him to get into blogging too when he is old enough. He is a ham he makes all sorts of videos now since apparently youtube is life. I should be happy but I feel really icky. I keep looking for a distraction. People expect you to just be in a good mood and if you feel bad they expect you to know why or to perk up around them. I just want people to validate the way other people feel instead of trying to change them. I do not know what that would sound like but I am sure more people would feel good about living...I love my son an most people around me I am a social creature but this ms has changed all of that...

Trying to human at the mall

At the mall watching my son bounce around. I am so thankful for indoor play grounds. He can play I can sit and watch it is in the air conditioned mall. It is great and free fun unless you count gas...at least I'm not exhausted after a few minutes of play to the point that I want to just go. He can run energy out in a safe environment. At the regular parks 5 minutes in I'm hot and exhausted just ready to go home. Then I'm sitting there trying to look like an active mom you know the moms who thought to bring water and follow their child from afar and call their kid down for water breaks etc. At the mall as long as I look up every now and then I got in just fine. Also blogging from my phone is 10 times better since my screen is smaller and it makes my posts look longer. On another note my son I super smart and super helpful he has decided he wants to help with taking care of me. He makes me lunch and makes sure I take my medicine. He insists on holding my hand because he thinks he can help if I fall (lol). He is so cute but I worry he will grow up faster because of me.

Flying Jitters

So, I am going to Texas soon to see my family. I have been flying since I was 12. I have never been nervous about it all of the sudden I am. I am afraid of not being able to do it and embarrassed about having to have help. I thought about just doing it myself but that scares me. I fall at home all the time...falling with my son at the airport would be scary. I am trying to focus on packing but i'm worried my carry on items will not be enough. I have four, two for me and two for my son but I only have three bags so I was trying to get another bag. I found a few super cheap but then I noticed a few clerical errors so my my bank was shy...aside from this my printer stopped working and my son uses it for school. I feel like I am drowning in debt every time I get somewhere I end up back at square one....whatever. My son seems happy I have picture from his summer camp he is having a blast and when I get to go on this trip he will have even more fun I'm sure...

What I have been up to

I have been trying to think about jobs I can do. Standing is hard, walking, sitting, thinking, and communicating all these every day things are not as easy for me. So I was trying to think of something I could do. I saw they needed a crosswalk person... so I thought I could do that and just after this I got up to walk towards the car and I felt myself walking. I felt drunk I teetered to the car  and decided maybe helping children cross the street is not my thing... so I thought maybe I could work in a call center. I was then called by a debt collector and my words were slurred I couldn't think fast enough I raised my voice and to be honest I  felt really stupid. I decided against the idea of a call center. Basically I just cannot seem to work in this society If I fall they assume I would sue if I even look unstable I am sure to lose my job...so when people think I am able bodied it upsets me because I can clean at home without being judged... If I do anything outside of my home society will assume I am drunk or something. I want a t-shirt that says I am not drunk I have ms. Change of subject though I have been trying to find a way I can bring money into the home and not just add up medical bills. As a result I twitch  I do not have a subscribe button but I do have a donation program as well... Twitch is a great way to ask me questions I can answer right off the bat. I don't talk much because a lot of people just want to watch me play. I will aleays answer any questions though and be active on the mic to talk with the people in chat. Making twitch a great place to get to know me.

New Ideas

So, I have some ideas to try and make a little money. Of course I cannot do it without followers. I have been using twitch. It is a place where I can game and get paid for it eventually. I would like to be able to make a separate blog for it. I also thought I might go back on youtube one for my son, one for me and maybe one for my gaming. However, this is a lot for me to handle so I am not sure how well I will do with it. I also have a great ides for an app for people with health problems but I want to get a patent first and I have no idea how to make the app. I am trying hard to make working at home a thing for me. This way I can support myself, stay at home with my son, not waste what energy I do have working away from my son, and if I get healthy ever again somehow I can do a better job at being a mom and maybe make more money. I eventually would like to get a camera for my ps4 and more games to play. I would also like to get some medical bills paid off, and fix my credit. It is not all gloom and doom I do have plans, goals, and really good days. The only thing is what I call a good day most people wouldn't. I think that a good day is a day where my son is having fun and my mate doesn't get beyond upset. I hope that my followers will check out each of these places here is my twitch: https://www.twitch.tv/shaionriswaifu my sons youtube is a bit out dated but here is a link anyways: https://www.youtube.com/channel/UCdUiToEtbJZQPZVT66fGFXw I still have to work on things but so far this is what I have so far...

undeserving

I have a hard time with the idea that poor people should not have nice things or do fun things. Coming from someone who is not only poor but also not healthy enough to work. I feel horrible when I spend money on anything but food, bills, and other responsibilities. My so is six and he will say mom can I do/have xyz if we have the money?" often the answer is no but he says ok and moves on. Most of the nice things we have were bought for us, given to us used, or the money was what I call lucky money. I do my best to remind myself that happiness is also a responsibility. being as incapable as I am makes me feel dirty when I do anything. I feel like if I cannot work I do not deserve to spend time with my family doing anything. Like going out is a crime. As walking is hard for me and gets harder each day I find myself in need of a wheel chair  for shopping, fun days, etc. I hate it. I push myself to walk hoping it will help me to walk. I still get stared at even though I have discovered that people around me can see the difficulty I have walking. I now have no hair . I tell myself that is why they stare even though they stared before. The only real difference is I care less and less what others think as I waddle to a wheel chair and sit down. If I have to get a push chair I feel like a burden and often try to avoid them. I hate feeling like a burden. "able bodied" people tend to say "if you need anything please ask I will help you" I get it they have lives and thins to do but when I here that I think maybe they over step themselves. I say this because when I ask for help it is often met by them taking their time to do it or them just avoiding it. Of course I feel like a burden. I try to spread my needs out to as many people as I can and I try to make my needs meet their needs. So if someone is headed to the kitchen then I will ask to be fed. However, it almost never works out that way. I often want to live in my own house and have a nice place...telling myself my son helps himself enough and having an open floor plan will somehow make life 100 percent easier. Even though I want those things I know I cannot have them. I feel like with all that I need from others how do I deserve to go out. When I do fun things usually it is me in a chair beaming at my son and whoever is with me. I love to see the people having fun. I often look miserable even when I am enjoying myself. This is probably due to all the physical pains and stuff. However, in my mind I am so happy. I remember in these moments my pepaw in his wheel chair watching us. I never understood how he enjoyed watching me. I do now. often when my family does fun things I get tired and while it makes sense that I want to go home I try to wait until they are ready to leave. This is mostly due to the fact that I want to stay as long as I can to watch them and enjoy them. It is odd how I can be so happy not doing much at all. I get so exhausted in my chair watching them run, climb, jump...etc I feel like they could do more if I could have some kind of income but so far that has proven to be a difficult thing for me. When I try to come up with ways to make money I and quickly reminded that even getting dressed is hard. As undeserving as I feel I went to fun spot with my son and his father I had fun mostly watching and tried to participate where I could.

Auron Wearing his daddy's new hard hat. No it is not really related to my post.

MRIs

So I had to get MRIs I have not finished my diagnosis so they are checking MRIs again to figure things out. I had two days of it which included four sessions. I have never seen my MRIs but I know they found lesions in my last set in the hospital. This time each day was two hours at minimum. For those of you who have never had an MRI they are not fun...at least in my opinion. They put you in a tube and tell you not to move. The entire time you hear the machine. It is like being the paper in a scanner. The first session was my brain and throat without contrast and the second was my brain and neck with contrast. I came out tired and ready to go home and crawl in bed. The next day was my back again one with contrast and one without contrast.

It is not too bad but many able bodied people tell me that they would not do it...Of course they would if it meant finding things out about their illness if they acquired one. So all I get to do now is wait on results. Ironically that is the hardest part waiting on results...The tech are not even allowed to hint at normal or abnormal results.

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...

What I am up to

Right now I am trying to be a part of society and maybe bring in an income to help around the house. I sell crafts when I can and sell random things I get my hands on to try and make money. I was thinking about doing a vlog as well but I do not know how well it will be received. I also do not know if it will be too much for me to handle. I always feel so silly because when I think about doing thing it is like my brain is so used to just doing things. When I try to do things my body is quick to reminds me that I cannot do them anymore. I struggle with video games sometimes. I struggle at typing, remembering how to read...and spell. Often I think I can clan and do things most people do. It gets exhausting just trying to do the simple things. People around me tell me I should do things even if they are hard. I run out of breath and have to take a break on the way to and from the shower. I try not to let other people bother me. I try to remember what I was like when I could just do things so that I do not get so upset. I find myself getting upset and not being able to communicate like I could before. I like this blog though because I can see what I am saying and I do not feel so lost. I can stop and come back and just keep going. You may notice my posts can be short sometimes and other times it is longer. I feel like other blogs are so much more than mine at times. I am worried about vlogging because people will see me and I am not as put together as I might come off sometimes. I suppose if I did not want to be judged I would not put myself out there as I have. I complain a lot. Lately I have just been trying to get through each day. I have my son doing Virtual summer camp and VBS to keep him as busy as I can while doing my best to be apart of it. I feel like I am not as big of a part of his life as of late...like maybe I  push him away. I am not sure how he sees me. I often worry about me being upset so easily.  He seems happy though. I would like to vlog with him and twitch with him. I dunno we will see.

Good days, and bad days

So, lately I have more bad days than good days. On good days I get up and spend time with my family, I clean, I shower alone, and I leave the house coming back in a happy mood. On bad days I wake up and I feel like there is a blanket of extreme weight on me. When I finally convince myself to move I feel burning and as I walk I want to lay down. I struggle to breath. I get mad about everything. I hate everything and everyone. Later I am left with feeling bad for everything. People around me just say to push through it. If I know I am doing something wrong stop. Trust me it is not that easy. If it were it would be done and my days would be easier. I mean think about it really... People say "just be positive and your life will get better" and I have tried trust me. I did not just wake up and say "Oh I think I will make all the lives around me hard and in the process I'll exhaust myself". I did not wake up and say "you know what who needs freedom I'll have others take care of me". I look around me and I get it life is not fair and people all struggle but fuck instead of treating me like an invalid treat me human and just show extra compassion. When I rage do not walk away to save yourself and others from me. Hold me till I calm down. People do not want to be around me because I get mean, Yes I do, I do not mean to, but I do then, I am alone because of it which really just makes things worse. The screaming that has been going on in my head gets worse and then when it spills out and effects those around me, they split. I hear myself say things mean things and all I want is for everything to stop and for people to understand how scared I am. I mean it is not all bad but on my good days like my really good days I still feel slow and abnormal. I get more joy out of other people being near me and trying to be happy then I do out of just existing. I ask myself how it got here. How it all came to this. I feel lonely even when I am around people. It is funny because even when people come to see me I want them to go away but when they do go away I am alone...and not happy. I cry soo much now, half the time I am not even sure why. When I have good days I just think better, do better, I enjoy things. This should be everyday.

Zero Value

I am up late because, this blog was meant to help me clear my mind, share what I am thinking with others, and hopefully help people deal with some form of chronic illness. I often feel drunk, or high even though I am not. I have a hard time balancing and my day can start off really well and end so badly. I wake up and struggle to move. I take a bath and brace myself because closing my eyes under the water has become a nightmare. I forget what I am doing while I am doing it. I struggle with spelling and many other basic things like dates, time, etc. I look at my 6 year old son and often question my ability to teach him. I try really hard to be logical and to show my intelligence. I often fall short of myself. I know I am no longer me. I used to feel so empowered just being me. Now I feel lost and often alone even though I know better. I tell my hand to make things happen and sometimes nothing happens or they seem to do what they want. I tell myself to get up and move but my legs fall short in their ability to hold me up. My cognitive ability is super low. I smile often though and struggle through each day thinking one day I may not smile. I look at my son and ask myself how far gone I am and how much further this will take me. While I can do anything I am focused on doing all I can to get as better as I can get. At the end of the day I am scared. Scared one day I will hold no value. Right now I have limited value. I cannot help with an income. I cannot help put food on the table or pay off debts. I know trying to get a job means I am asking for the employer to accept me on so many grounds. At the end of the day I know they will not be able to. I look for other ways to bring in money and always fall short. I never feel like I am doing enough. Like I am not enough. I feel like a huge burden and a waste of space. Which is funny because I have so many people who love me and say none of it is true. If it is not true then why do I feel this way. I was not always like this. I worked...and hard too. I took care of everything I could. I did my best to be a good mom and wife... and if I was why am I so alone now? Why do I value at zero. No one goes through life thinking they will have no value. I had so many desires, hopes, dreams. I wanted to be someone and to do something. In all of this somehow my family, friends, and even strangers seem to love me. They seem to want me in their lives. So the point in this blog is so people can see that even when life is hard...there is more. I will be ok. I may not ever be the old me but, I can embrace the new me. I can make this work. I cry sometimes but it's ok to not be ok. I just have to keep going. A wise man once told me that the only real difference between sane and insane is perception. Mind over matter. It is what you do with how you feel that hurts or helps. Of course he said it in other ways but to be honest I cannot remember how he said it. the meaning behind it stuck and I am sure he could say it 100 times more perfect. I like to put pictures up with each post this time I have no real lead on what to put here so I'm wingin it... A wise woman once told me "fake it 'till you make it" so here is a shot of me and my dad.

My Pepaw

I know that when I was a baby My Pepaw was thin and able to walk. I do not remember it but I see pictures of him. What I do remember is when I would sit on the floor next to his wheel chair and play games. It is a pattern of course gaming was a big part of my life I was a 90s baby so games were the up and coming. I remember oreos and Dr. pepper. At a very young age Dr.pepper was also a big part of my life. I remember visiting my grandparents and my parents did not seem to like the habits I picked up. I remember sneaking out of bed late at night to a light nudge at my feet. It was Pepaw with his finger to his lips beckoning me to get into the Dr.pepper and Oreos to bring them out while he got the t.v. ready. We would stay up really late and wake up really early to spend as much time as we could alone together to play. I also remember him chasing me through the house in his chair doing his best to scare me with his teeth. To be honest during this time my Memaw was not as vivid a memory. My Pepaw was the only thing I could see. I loved him with all my little heart had. When I was 10 I was visiting my mom and something told me he was not here anymore. Sure enough my mom came in and did her best not to tell me what was happening so that I could fly out calmly. I knew though I was not upset. I took it rather well. It hurt but in my mind he was happy and able to walk again. I have never responded to death like most people and I still do not grieve with tears. I did it my own way and in my own time. I did many times in my pre-teens and teenage years cry but mostly because the house was so quiet without him. I cannot imagine a life without these memories. Seeing him and loving my Memaw and my Pepaw gives me strength to push on. Life is not easy for anyone. The best thing my grandparents showed me was not to judge people. Having them has opened my eyes to so many things and helps me with my son and him having grandparents.

My Memaw

My Memaw had so many illnesses and functioned well enough to care for my Pepaw (who had a seizure and was in a wheel chair. She is someone I look up to. I loved her with all of my heart and she always seemed so proud of me even when I made mistakes. She had 3 children and lost one at a young age. To me being half the woman she was would be a feat. I miss her very much. I remember her watching me play games. She would buy them and set them up and watch me play. It was a big part of my life. Christmas was her favorite holiday. She would decorate her yard so well and always went overboard. She always sent us home with a vehicle full of stuff. I saw her twice a year and enjoyed every minute of it. When I got my GED she gave me her SUV it was a God send and I still remember how it felt driving it home. My son called her MiMi and she loved it. I remember when she bought me my clarinet and sent me to private school. She made me feel so special. She would not have me going to the local schools.

She had Lupus and diabetes and may have had other issues I was not aware of. I never saw her cry and I never saw her not want to push on and live. I loved food at her place and enjoyed cakes and she always made sure no one went hungry or left without eating. She was great with technology and always wanted the newest thing. When she died I started getting sick...When I feel like I can't do it anymore I think of her and it helps. The best thing in my SUV is a recording that holds her voice. I love listening to it. Sometimes it hurts but it makes me feel closer to her.

Best friends

My son is really attracted to Autistic children. This becomes more apparent as he finds his own new friends and I talk with their parents and as I guessed their child is in some way Autistic. His best friend Azrael is Autistic and they are inseparable. I love watching them play and I love listening to their conversations. It really makes me wonder how much my parents paid attention even when I thought they weren't. Here is a shot of the boys.

The are pretending to be in an orchestra. Azrael is super smart and they share traits now they are like brothers. This is a good thing sometimes and a bad thing other times. They beg to be together and get upset when it's time to separate. They fight and sound just like two brothers. It makes me happy because they are both only children so they need this plus My son has always wanted a sibling. Auron catches good traits like going potty on his own. And bad traits like squealing.  Me and Azraels mom are also best friends and we have both admitted to telling our kids when they are away from each other that they are not the other. Her Dog and my dog are best friends too. This has created a great family away from family lol. It's hard to explain.

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.

Liar

I am often accused of lying or exaggerating about my situation. Most commonly from people who do not see me in my day to day life. It hurts to be told that. Especially after I spend my days convincing myself I am not crazy and I do feel these things. When something abnormal occurs I often do my best to take a step back and ask myself what is happening. I ask myself what I am feeling exactly and what may have caused it. If it's back pain for example, I would look at how I have treated my back all day... I'll be the first person to say "well what did you expect when you slouch all day"  If something occurs and I can share it (like if my heart is beating fast or just funny)I do so I can make sure it is not just me. So when these people say I'm exaggerating or lying it hurts.This is where I start a new thing. I am going to start adding definitions. I have been called a hypochondriac (according to called the mayo clinic is defined as illness anxiety disorder, sometimes called hypochondria or health anxiety, is worrying excessively that you are or may become seriously ill. You may have no physical symptoms. Or you may believe that normal body sensations or minor symptoms are signs of severe illness, even though a thorough medical exam doesn't reveal a serious medical condition.) To me when they found the lesions that meant this was not a figment of my imagination.

Support group

I posted saying I have an Epic support group and I do. There is no lack of moral support and often physical support in my life. My mom is amazing she knows when I feel bad and does her best to be here when it really matters. My little brother (1 of 2) who never fails to make me smile with his shenanigans and trouble making. He still respects me and that makes me feel good even though I know I'm not all here.  My sister (3 of 3 ) helps me with everything that is hard for me to do (it is a lot laundry, school, my son, and whatever else I need) . My sister (1 of 3) helps me stay updated on all the gaming stuff and puts my crochet obsession into reality. My sister (3 of 3) works hard and always gives me the most logical advice. My relatively new best friend always has my back, does her best to get me where I need to go, helps me with my room and does my hair. My mate who sits with me and holds me when I can't control myself. My son loves to help and care for me when he can (he also refuses to leave me much of the time). That is just immediate support!  I have a best friend whom I have known since I was 11 or so who always answers my calls and I get to leave it all and go see her from time to time. I have her mom who also always answers my calls and treats me like I am hers. She loves my son and treats him like a grandchild. That gives me support group here in Florida, in Virginia, and in California. I also of course have my dad, Step mom, Aunt and(2 of 2) Little brother, they are always following me on facebook and liking my things. My dad understands that my anxiety keeps me from the phone and loves to hear from me every chance he gets. My Aunt never fails to tell me she loves me as often as she can. My step mom does a lot of research when I have questions (reading is actually hard for me so it helps a lot) My little brother is a teenager so he goes through a lot but never fails to hear me out and makes me feel needed. I have another best friend who never fails to remind me that I have a getaway there and that she loves me. Giving me my support group in Texas. Somehow I forget from time to time that I have them. I know it seems crazy but then again my brain does not really work like most brains. Much of the time Someone in support net is there to catch me. I still get sad like really sad though and still feel alone. I know better but it never fails. I get to the point of crying and honestly not wanting to be here. The issues I am going through  are often hard to understand. This leads to people trying to understand. My thoughts often do not sound logical to others.  This leads to people thinking I am crazy. I often talk about my support group because I have remind myself they are there...trying to make my life easier. They love me and want what is best for me. I am not pleasable and yet they try often and hard.

Easter 2016

Confusion

As I kept going I soon realized it was growing harder. My son started Preschool at an amazing local Daycare Lake county prep Academy It's amazing it's in Eustis. I would get him ready do his hair and load him up in the suv my Memaw gave me. I drove him to school. Even then I began needing help. Waking up got hard and my mom would help me. She would drive over help me get him ready and help me get him to school when it started getting too hard. Mrs. Bromfield the director was amazing. I helped them setup their website and loved being around the school. So much that I started working there. One day I was driving and I tried to stop at a stop light...Pretty basic. My foot was in the wrong spot I felt like a deer in the middle of the road. I had no choice, Although I had lived through it I decided it was not worth the chance. After all my sons life, my life and the life of anyone in the car was at risk... I stopped driving. Even as a rider I would forget where I was going or what the daily plans were. I eventually quit working at the daycare because although I loved the kids and my job I wanted these schoolers to have a teacher who could focus. I started forgetting the order of things like days of the week, months in the year, numbers even. I would forget how old I was and how old my son was. I was always confused. I would stutter, stop talking in mid sentence, Lose words in my vocabulary. I always prided myself on having an extended vocabulary. I believed in precision of language and that using less words was easier than using a bunch of tiny words to explain something. When I talk to my son I use big words. I am often judged because people think he won't understand. I believe he knows what I want and the only way for him to learn is to hear words. Why does it matter what words I use to describe the message, as long as he gets it? I mean when I think about it I have used these words since he was born. It is not like I woke up one day and changed my vocabulary. As such,  my son shocked and continues to shock people around him when he uses big words like vulgarity, exasperated, and so on. I beam every time I hear him use big words. Since, I suffer from confusion though My vocabulary is fading, my processing speed is lower than most. I often feel like when I look in a mirror I do not see the old, intelligent, confident, witty me anymore. My stories often run on and lack a beginning end and middle. Despite all of this I push on...

Auron at VPK

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.