The self-destructive ways of life.

We all have a 'self-destructive' part of us, sometimes I don't think we realize it. It is there, it is in our subconscious mind and it hurts us and those around us. Sometimes, it comes out into our conscious mind and it gets worse and you can't believe it took that long for it to come out. But then you realize in that same moment that it was there all along. It sucks. It is life. You can't really do anything about it. You can try to ask for help but then you feel weak even though you are being strong but that is a part of the self-destructiveness. It is also the loss of self-confidence and blaming yourself for everything that goes wrong and not giving yourself credit for the good things. It is hard to understand if you have never experienced it but then when you get it, when it happens to you, you understand. And you feel alone.

I have all of these words in my head, I just needed to write them down. I wasn't going to but decided to, just now. Lately, it has been very hard for me. Some of my friends know something is wrong but I don't know what to tell them. It is like everything on my life is collapsing in on itself. I have no motivation, I feel like I have no strength at all and I keep putting myself down and don't know what do. It is hard for me to keep conversations and to concentrate on having a conversation and actually doing 'normal' things. I just don't know what to do anymore. My family is going through a rough patch, my GPA is plummeting, some of my friends are not doing so well, I can't keep my room straight, I am just fucking up left and right, I just can't. I don't want to talk to my friends and family about it because I don't think they will understand at all.

I am at the point in my life where I am subconsciously tearing myself apart from the inside and outside of my life. I will not go see a therapist, I tried and I never understood that talking to a stranger could help. I mean not for me at least. Talking to a therapist, to me, is like biofeedback. It just doesn't make sense. I am constantly thinking about how much I hate my life right now. It doesn't make any sense but at the same time it does. I am only here because of friends and family. I have lost all confidence in myself.  I don't want to be a burden on anybody. That is why I haven't told anybody about this. I have been struggling with this all semester. It has just been continuously getting worse.

I have not been thinking about taking care of myself at all. I have not been doing a good job at that at all. I have been doing things that I never thought I would ever do because I think to myself like "who even gives a fuck? what is the point? I am already sick? I am going to not live the full life I always thought I would. whatever 'living a full life' means." A lot of it is stuff from my past and everything else that is piling on and piling on....I have made a lot of realizations about my life this semester and they are honest and not good ones.

It is like I want to talk to someone about it but I don't know what to say. I don't know where to start, I don't know who I can trust. This is just a start. But I have not lost my hope. I know things will get better. They always do.

I have been self-destructing all semester and it just keeps getting worse and worse. I figured that writing this would make me feel better and it did like a little bit. I think the sad and sort of funny part about all this,  is that nobody even knows. My friends and family don't know that I am self-destructive and that I am making questionable choices. They know I have had a hard semester but they don't know how bad it really is.

I know that as soon as they (friends and family) read this that they are going to try to help me and reach out to me. I don't want them too. It will just be overwhelming. I don't like it when people tell me how to live my life and what I can and cannot do. It is one of my biggest pet peeves. This post is sort of more of an awareness to them. This is what is going on in my life. Don't give me pity. I don't need it. I need prayer and love.

I think I am going to keep telling people that I am fine because I eventually will be. I hope.

A Huge Shock

After I was diagnosed and started to tell close family and friends about my illness, they were all shocked. Most of them anyway, they were shocked because they didn't even know something was wrong with me in the first place. This is because I was and continue to be very good at hiding how I feel emotionally and physically. I didn't want anyone to know because the doctors didn't even think that there was anything wrong. I knew something was wrong but didn't know what. Then when I was finally diagnosed, I still had to try to figure out what I had. I had the name but the doctor didn't do a very good job at explaining what this did and what it was. So, I was still researching and trying to figure out what it was. It felt good to have a diagnosis but scary because it was such an unknown illness and it was hard to wrap my head around it. 

People didn't even know I was sick. That is why they were shocked to find out that I was. They didn't know I had been suffering from this illness for about four years before I was even diagnosed. I can believe it would be hard for them to find out that a young college girl is sick but looks completely fine on the outside. Sometimes it was even hard for me to wrap my head around how great I looked but how shitty I felt. 

Even before I was diagnosed, my mom knew I wasn't feeling good but she just didn't know how often. I didn't go into great detail with her about it because I didn't want to worry her. I didn't want to tell her about all the times I had to lay down or sit down because I thought I was going to pass out. Or about the times that I fell to the ground because I was too weak and almost passed out. It worried me but I didn't want to worry her. A mother shouldn't have to worry about her daughters health. That is not the way it should be at all. But it is the way life is. It is not fair. 

Needed a Little Bit of Change

I hope you all have noticed my new template on my blog! I love it! I need a little bit of change in my life. It has been one of the most stressful semesters I think I have had. Then again, with this illnesses and everything else that has been going on in my life, every semester is stressful. But for some reason, this one seems to be really bad. I am giving myself another little break. Taking a few "personal" days off from school and leaving the city. I am going to spend some time with my family. I haven't seen most of my extended family since Christmas. So, I think this will be good for me! Plus, since I am going to be gone and missing some classes it has given me some motivation to actually get my stuff done. I have had like no motivation to get anything done this semester. Today, I want to get it all done, like right now.

New Blog; Check it out!

A friend of mine started a blog! Yah! She mentioned the group that I started on campus! I am so glad to know that the org I helped start has helped her open up about talking about her illness!

Here is a link to her blog: http://www.agirlnamedellie.com/living-chronic-illness-pcos/

One Year Diaversary!

Yes, that is right. It has already been one year since I was diagnosed with POTS. Today is the day, April 6th, the day I was finally given an answer to all of my problems. Although, I was dealing with POTS for at least five to four years before I was diagnosed, I was just glad to have a name for the hell that I was going through. It gave and still gives me a name to blame. Diaversary (diagnosis anniversary) is a term that I was told by my friend who celebrates her own Diaversary. I mean it isn't the best thing to celebrate but it has greatly impacted my life in many ways. It has changed every part of my life; my personal, social, family, school, etc. I have a blog now and started a Chronic Illness Awareness and Support group on my college campus. I have met so many people after being diagnosed. I have learned to adapt, sort of. I have asked, listened and learned from other people's stories. It has been truly life changing, of course I would rather not have this illness but I have no choice. I guess I will just have to accept that.

One of the things I have most appreciated after being diagnosed is seeing how the people in my life have either come or gone. The ones that are still in my life; I truly love and appreciate. The ones that have seen me at my absolute worse really know how bad this disorder can get. My mom says that she actually forgets how bad it can get because I am so full of energy, ha, when I have energy. I think I forget too. Then I remember, when I have a bad week like this last week. People have been there for me whether I am just having a bad flare-up or in the ER. Some have taken me to the ER or visited me there and others have just gotten me water or my pills and I appreciate all of it. It is the simple things that really help me too. I don't think people realize that.  Another thing people don't realize is that just saying something encouraging to me when I am feeling terrible helps me fight. And that is why today I am wearing my shirt that says, "I'm not superwomen, but I'm fighting dysautonomia so close enough." Dysautonomia is the 'umbrella' term for POTS, just in case some of you didn't know. I will write about that eventually.

You may be wondering how I am "celebrating" today. Well, I am wearing that shirt and I have four classes and three meetings today. One of them is the Chronic Illness meeting and we will be talking about our and sharing our diagnosis stories. I also bought some candy for whomever shows up! So, that is how I am "celebrating."

What a journey it has been and will continue to be...

Sharing Stories and Spreading Awareness (Autism):

I want to continue to do things like this; sharing peoples stories and helping spread awareness. I see posts on FB by my cousin Melissa about how she is a special needs mother and trying to spread awareness about Autism. I realized that I didn't know her and her son's story. I have always wanted to know but just never asked. So I finally did last week when I saw another one of her posts. Here is her story: 

"My journey with my sons Autism began in 2011 at the age of 2, when my dad came to me about concerns with Julian's development, I remember at the time I wanted nothing to do with the thought. I didn't want to believe that something could be "wrong" with my baby boy.  He hadn't spoken yet, only baby babbles and said mama occasionally, other than that Julian was early with his development. He crawled at 5 months old. Rolled over at 3 months old, walked at 11 months old.  It wasn't until 2012, after I had moved back to Minnesota from Virginia during a divorce, that I learned about the Pediatric Autism Clinic at the University of Minnesota. I waited for a year to get into this clinic after Julian's new pediatrician saw my concerns and referred me. 

I remember the day I got the call that there was an opening earlier than our scheduled appointment and of course I took it. Julian's Dad and I are still friends, so he came with me to the U of M for his appointment and that day we met Dr. Rumsey. She is a wonderful, wonderful neuropsychologist and we still work with her today. Anyways back to that day, Julian underwent a bunch of testing, and Dr. Rumsey confirmed what we already knew. Our son is on the Autism spectrum, with a diagnosis of global developmental delay in addition to that.  It wasn't hard to accept because at that point I had come to terms with it and began advocating for my son after the big move back to Minnesota. 

I got him the services he needed with early childhood special education, speech therapy, occupational therapy, PCA services and a good disability social worker, who we still work with. Julian is non-verbal, with self-injurious behaviors.  In the beginning, he didn't self-injure, that didn't begin until about the middle of kindergarten, which began with pinching his cheeks when he would get overstimulated or upset and unable to communicate his needs. With continued redirection of his self-injurious behavior the cheek pinching stopped for a while, then he began to bite his wrists so badly they would bleed. This got Julian a referral to a level four setting school for developmentally delayed children.  

This school has been good for Julian, however, it is an hour and a half drive from home, and that takes a toll on him. Living in a smaller community makes it harder to get the services you need unless you know where to look and know how to advocate for yourself. Having a good support system has been very very helpful as well.  Julian is able to better communicate, using something called picture exchange communication system (PECS) which he is very good at, he will flip through a book, and make me a sentence, then hand me the sentence strip to let me know what he is requesting. He also has an iPad that we use with him, although he doesn't always want to use the iPad. Julian is a very stubborn boy, (obviously a Borning lol) we have touch German blood and don't give up easily. He is also a very sweet, smiley, giggly, happy-go-lucky little boy. Everyone who meets Julian comments on how sweet he is. That doesn't mean he doesn't have bad days, winter is especially hard for him and we usually see an increase in the meltdowns and the self-injury.  Bath time is really a struggle for him. Because is sensory overloaded, and relies on a blanket covering his head to "ground him" when we take the blanket away for his bath he will go to bite himself, so it requires two adults to bathe him, so that he does not hurt himself. This is getting better now, but for a while it was so bad we had to rely on giving him sponge baths so that his wounds would heal.  

He might always have issues with the sensory overload and he might always regress a little bit, I have hope for him to go to college, just like any Mom hopes for her child. I know that Julian is very very smart, probably smarter than we are. His IQ is high, even though he has a developmental delay he is learning, just in his own way. Outside the box, and the norms of society. I also know that I will take care of Julian until I'm too old to do so, I will never give up on him, I'm his constant, in a scary changing world, I will never put him in one of those group homes when he is an adult, I can't bear the thought. How he would feel.  He'd feel like mommy gave up, and I won't. Ever. He is only 6, I have so much faith in him that he will go far in life with the right support and the right therapy. 

Julian loves to be tickled, when he is having a good day, his giggle, which is like Ernie from Sesame Street, is infectious, you can't help but smile and giggle along with him because he is absolutely delighted in what he is doing.  On bad days, Julian tends to get very vocal, he'll screech and cry, and that can be emotionally draining because I go through all the steps to get to the bottom of what the problem may be. Is he tired? Is he hungry? Does he need to use the bathroom? Does he not feel good? The list goes on and on. I'll suggest to him that he uses his PECS, or lead me to what he is wanting and show mommy. Sometimes this works, but if he is not wanting to cooperate and let me know of his needs, it is really hard and it's a guessing game.  After a while he will usually calm down, I have found that lavender oil foot rubs and joint compressions really help him to feel more centered and grounded. 

I was doing all of this as a single mother, as Julian's dad lives in the cities and I live three hours away. Although we are friends, he does not see Julian more than once a month. In 2012, I met someone in the midst of the divorce, fast forward to now, 2016, we got married, and his support and understanding of Julian has been wonderful, he has gone to U of M appointments with me, IEP meetings, doctors’ appointments. The father that Julian needs every day, he finally has, when I'm exhausted and what I'm doing is not working with Julian he steps in and will help Julian with whatever he is needing. 

We still have daily struggles, some more than others, but we have a good support system in place. I keep advocating for my son, never giving up hope, and spreading Autism awareness, he is not " disabled" he is differently abled, and he is beautiful."