Stream of Consciousness

I feel like a prisoner in my own home. I’m held captive by my illnesses. They keep me from going out, even just to the grocery store; my mental health makes me afraid of leaving home, and my physical illnesses make leaving home difficult. My depression makes me not want to get out of bed. My chronic pain makes getting out of bed too hard a lot of days. My borderline personality disorder (BPD) makes me long for companionship, but my social anxiety makes me terrified to be around people. My negativity from the bitterness I’ve acquired has made me a person others don’t want to be around. I can’t blame them… I don’t even want to be around me, but I don’t have a choice. I’m locked inside this body and this mind that I don’t want anymore. I don’t know how to fix it. I can’t fix my health. Everyone tells me I’m the only thing standing in my way, but there are some things that I can’t fix. I can’t snap my fingers and make everything okay. I can’t magically stop being so anxious that I hide when the UPS man comes to the door. I can’t stop being so depressed that even bathing is too much for me to handle. I can’t undo years of trauma and have my BPD disappear. They act like I’m not trying to change. I’m trying my hardest and I’m not getting anywhere. I live the same day, every day, over and over. I can’t do it anymore. I can’t be locked inside this hell. I’m suffocating. I need a change. I need happiness. Nothing makes me feel good anymore. I feel like every day I’m just waiting to die, sometimes hoping for it so that I don’t have to live this way. I often hope that I get into a terrible accident and I’m pronounced DOA. I feel like I have nothing to live for. The only thing keeping me here was my family and I’ve just about lost them all. I’ve got nothing left. I’ve been out of college for two years now and I’ve gotten nowhere. I feel like time is frozen, I’m stuck in one place while everyone else around me is achieving their goals and their lives are naturally progressing as they should. I’m trapped. The last two years have been the worst of my life. Being a college graduate with goals I can’t work towards, being single and not hopeful I’ll find anyone because, let’s be honest, who really wants to be with someone like me? I want a husband. I want a family. I want to go to grad school. I want a career that I love. I want to enjoy life. I can’t remember the last time I was truly happy. I’m losing more every day. I thought that sharing my journey with chronic illness and navigating through all of the garbage that goes along with it, plus mental illness thrown into the mix, would be inspirational to others. I wanted to bring awareness to so many things. I wanted to help people. I wanted to make other people feel less alone. I know there are some people who can relate and who have felt less alone because of me sharing my experiences. However, making my entire life public has been one of the worst decisions I’ve ever made. My YouTube channel has brought so much pain, from people telling me I’m untrustworthy because of my BPD to telling me that “no wonder you’re alone” because I’m such a mess. I’m not the kind of person who can handle criticism, so I don’t know why I thought it was a good idea to share my life. I don’t even like myself, so having to deal with other people disliking me just makes me feel worse about myself. I’m not likable. I’ve never been a likable person. I’m negative, bitter, annoying, stubborn, and a host of other less-than-appealing traits… of course I’m not liked. I can’t change who I am as a person. I am who I am, but I don’t like who I am. I want to be someone else. I wish I could change everything about myself. I try so hard to be positive, to be more optimistic, but I get nowhere. I feel like I’m spinning in circles trying and trying and not making any kind of progress.

I want to be able to do things without having to think so much. I don’t want leaving home to be such a chore every single time. I want to be able to go out to a restaurant and not have to worry if the food is going to make me sick. I don’t want to have to worry where the bathroom is everywhere I go in case I need to get sick. I want to be able to go to the grocery store and not have to go through the self-checkout line just because I’m terrified to interact with cashiers. I want to be able to go on mini road trips without worrying about whether or not I’ll be able to drive back home because I’m too exhausted. I want to stop being tethered to a tube on a daily basis. I don’t want to worry anymore about carrying batteries, saline flushes, alcohol swabs, heparin flushes, extra port dressings, and medications everywhere I go. I don’t want to need to carry plastic bags in my purse just in case I need to throw up and there’s nowhere nearby to do it. I want to be able to go to the movies without worrying about my anxiety kicking in and having to leave halfway through, or having to leave because I’m sick. I don’t want to worry about sensory overload. I don’t want to take pills 4 times a day. I don’t want to have to worry so much about food. Am I eating enough? Am I eating the right things? Am I losing more weight? Are my organs at risk? Nothing is simple. Both my mental health and my physical health interact to cause problems with my daily life, with the simplest of tasks. Don’t get me wrong, I’m incredibly thankful for the treatment I have available to me, but I want to not need it.

I don’t want to be suicidal nearly every day. I don’t want to have to keep tweaking my medications because I’m either too depressed, too anxious, too numb… there’s no right combination. I don’t want to have to work so hard to try not to hurt the people I love most. BPD is a constant struggle. I push people away without realizing it. I push people away and lose them for good. It takes ending up in the hospital from an overdose for anyone to really care. What does that say about me? I’m not a good person. If I were a better person, it wouldn’t take such horrible things for people to be there for me. I want to be a good friend. I want to be a good sister, daughter, and aunt. I often think about what would happen if I died. Would people come to my funeral? Would people truly care that I was gone? Would people talk about how much I positively influenced their lives? I can’t help but think I’ve affected people negatively more than I have influenced them positively. I want to impact others in a positive way. I want to help. That’s all I have ever wanted.

I need to change; for me, first and foremost, but also for the people around me and for people I have yet to meet.

Advertisements

Still Hibernating

I am SO sorry for my lack of posts! Things have been… insane, let’s just put it that way. Too many things to handle, and when you lack coping skills, that’s a recipe for disaster. I will update more when it’s not 4:24am. Yeah I’ve been having terrible insomnia every night despite taking Ambien. Go figure!!

I hope everyone’s doing well.

❤ Gina

P.S. I’m including the link for my GoFundMe because I’m struggling. I really need to raise enough money to get Arthur trained, as my health is declining and it’s too hard for me to do all the training myself like I planned. Share if you can… anything helps https://www.gofundme.com/ginasmedicalfunds 

15731797_10208258032115284_6242987707979393778_o.jpg

Here’s a (lengthy) video update if you have 50-some minutes of your day to spare lol

Hibernation Mode

Sorry everybody. I’ve been utilizing my YouTube channel more than I thought I would so you can go watch my videos if you’d like current updates. I’m going to make a post here soon. I’ve just been, as it says, in hibernation mode. Do you ever feel so alone and so isolated, but you don’t want anyone around? It’s the strangest feeling.

Things I need to talk about:

– BPD/mental illness and people not understanding, even (and especially) loved ones 

– IVIG

– Potentional surgery because my colon hates me

– Arthur (service dog prospect)

– In general, the craziness that is my life 😜

YouTube: https://m.youtube.com/#/channel/UCp0o5VHKlgsThHYQB33jTFg

GoFundMe: https://www.gofundme.com/ginasmedicalfunds

Instagram: @missgina25

Struggles of a Chronically Unemployed, Chronically Ill Girl

Hey everyone. I know that I’m not the only one struggling with finances but I am in a complete panic because of medication costs and bills and all that stuff. I’m waiting to hear about SSI and also food assistance, but those types of things can take a long time. I’m still working towards getting a service dog. I need one right now especially and I so wish that I had one. I would so appreciate it if you would even just share my story. I’m all about awareness. So many people have never heard of autonomic nervous system dysfunction (dysautonomia), and it’s VERY common, it’s just rarely heard of. I desperately wish that I could work. I love love love feeling like I’m accomplishing something. We are working towards getting me to the point where I can work at least part time and hopefully go to grad school in the next year. Thanks for taking the time to read my rambling. You’re all awesome ❤

https://www.gofundme.com/ginasmedicalfunds

❤ Gina

Chronically Awesome

Well guys, I’ve decided I’m just going to own this whole “chronically ill” thing. It is what it is and I can’t change it. There’s no use being bitter about it, or denying it, or trying to pretend that it’s not there. If I try and act like a “normal” person, I push myself too hard and get sick(er), taking days to recover, and my illness(es) end up staring me right in the face anyways. Trying to make new friends and date, pretending that I’m fine is pointless too because they’ll find out sooner or later, and I don’t want someone in my life who can’t deal. I just wish I could get people who are already in my life on board and stop acting like there’s nothing wrong with me. “Well at least you’re not dying” or “It’s not that bad” is not okay to say. No I’m not dying, and that’s great, but yes I am sick, yes it is bad. Yes it sucks. My life does revolve around being sick. But that’s okay because I’ll be okay 😊 (but remember, it’s okay not to be okay sometimes)

“Just be positive”

I cannot tell you how tired I am of hearing this, and it generally comes from a healthy person. It’s just as bad as “things could be worse.” I know that a lot of other chronically ill people feel this way, too. I don’t think a lot of people realize how difficult it is to be positive when you’re chronically ill, especially when you’re still trying to get everything figured out. Going through tests, experimenting with different treatments, taking 2 steps forward and one step back, more tests, on and on, repeatedly… it’s HARD. I also don’t find it helpful when people tell me, “I know people with cancer who are still able to be positive.” And that’s great for them, but not everyone has that capability. Pulling yourself out of that mindset isn’t easy. For people like me, it’s even harder. I have lived my whole life with a negative mindset… that’s just how it was. I thought the worst of every situation, assumed the worst in people, that way I couldn’t be let down if I was “positive” and got my hopes up. But I still ended up getting let down anyways so I guess that blew up in my face. What I’m really trying to say is, when you don’t live it and you’ve never lived it or anything close to it, you don’t understand how difficult it can be. That statement is often more harmful than helpful. I would love to “just be positive” but it’s not like I can just wake up one day and BOOM! my mindset changed. The fact that I suffer from depression, anxiety, and borderline personality also don’t help the situation. Everything in my brain tells me to be negative and it’s like I can’t go against it. I try, I really do. And I do have days, or sometimes even just a few hours, when I am positive and then all of a sudden I’m back to the old mindset. It’s not a switch that I, myself, can turn on and off. The intermingling of chronic illness and mental illness is extremely stressful and sometimes I just don’t know how to handle it. I feel like some people (the people who say this, or say other things that they think are uplifting but aren’t) don’t want to face the harsh reality that is chronic illness. If it’s not happening to them, not affecting them, of course it’s easy for them to say those things. I’ve been told, “If you don’t start being more positive, you’ll lose everyone by pushing them away with your negativity.” That has already happened. A long time ago. I’m trying to rebuild my life and my support system but guess what? That’s also difficult when you’re sick. Cut me some slack. I’m only human. We all are. Maybe if there was a little more understanding and a lot less supposedly “uplifting” comments, we’d all be a little better off. I know that if “healthy” people (not that it’s us against you) would do some reading and research, especially on a loved one’s particular health problem, things would be so much different.

The link below includes this particular statement, along with others that generally aren’t helpful to a chronically ill person:

Things not to say to a chronically ill person

My YouTube Channel

If you can, I would so appreciate you taking the time to read my story and donate if you can… I’m trying to raise enough to be able to get a service dog.

My GoFundMe

❤ Gina

Frustration With Medical Professionals

I had a bit of a frustrating visit with my counselor yesterday (5/19). I ended up leaving there more depressed than when I went in which is definitely not a good thing. I’m hoping she can help me, I’ve seen so many counselors, trying to find the right fit. I really liked my last one but she couldn’t see me often enough. It’s important to find a counselor that you can connect with and feel comfortable with. I’m still not entirely sure about my current one. Plus she wants me to see a second counselor somewhere else because I require “more intensive care” with everything I have going on. She’s just worried about me because of my malnutrition and is encouraging me to eat and drink more. Yes, I’ve heard this for the thousandth time, thank you. If I could eat enough, I would. I like food. I miss food. I want junk. I want pizza and ice cream. If I could just go back to a normal eating pattern then I would do so. Currently I’m eating baby food apples, Jello, soup, cereal, and toast. That’s basically it. I’m barely drinking anything either. But my labs are fine, aside from showing dehydration so I’m okay (for now). So at least there’s that.

POTS update: I started Midodrine 2 days ago and I think it’s making me worse. I’ve been really tachy (tachycardia = fast heart rate) and it feels like my heart is going to beat out of my chest. My mouth is dry and has a weird taste, and I’m having killer headaches. I’m sick of medications that have such bad side effects that you don’t even notice if they’re helping what they’re trying to treat. I’m tempted to stop all of my medications but I know that wouldn’t be safe. I’m also feeling much weaker than usual, really wobbly, like a baby giraffe standing for the first time haha. If I’m out in public with my mom I’m usually holding on to her or we bring the wheelchair. Oh, the life of a POTSie.

Fibromyalgia update: I hate insurance. My new policy won’t cover one of the medications I was taking that really helped, EVEN THOUGH it’s under the same insurance company. WTF?! I need it because my pain is getting worse and worse. It’s called low dose Naltrexone for anyone who might be interested. They use it to treat a lot of different things, particularly fibromyalgia and MS. Now, Naltrexone at the FULL dose (much higher) is used to treat opiate addiction. At the low dose (only up to 4.5mg), it is helpful in treating various ailments. So if you happen to ask your doctor about Naltrexone, make sure you ask about “low dose” or they might look at you like you’re nuts. You may also want to print out information to take to your doctor, because a lot of doctors either don’t know about it or are hesitant to prescribe it. Here is a site with a lot of good information:

http://www.lowdosenaltrexone.org

This scholarly journal article may also be helpful to show to your doctor:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

So anyways, I’m still REALLY nervous about starting my iron infusions on Friday. I’ve heard horrible things about side effects, and that it can take a week or more to even feel the effects. I’ll have this infusion and then another one next Friday, and we’ll go from there. I’m very surprised my insurance is covering them because they’ve been fighting me on everything else lol

Next week I have a gastric emptying test to evaluate for gastroparesis. During this test, you eat some egg beaters with a radioactive tracer, and toast with jam, along with some water, all within 15 minutes. They then take X-rays every so often to see how fast or slow your stomach is emptying. Slow = gastroparesis. I had this test once before, back in the fall of 2014, and it didn’t go well. I got really sick so the results were invalid. I’m concerned I’ll have the same reaction as before and yet again have inconclusive results. It’s all just so frustrating! If anyone knows, it’s my fellow chronic illness sufferers. These doctors, and medical professionals in general… I could go on and on, but I won’t for the sake of my sanity and yours.

I hope everyone is doing well, or as well as possible. Keep fighting. You’re stronger than you think.

My YouTube Channel

If you can, I would so appreciate you taking the time to read my story and donate if you can… I’m trying to raise enough to be able to get a service dog.

My GoFundMe

❤ Gina

 

Mental Health Awareness Month

I just wanted to share these two videos I made for Mental Health Awareness Month, because the subject of mental illness and the stigma attached to it is something that’s really important to me. The first is a little education about borderline personality disorder (BPD), and my personal experience with it. The second is a slideshow that more briefly explains what it means to have BPD.

 

My YouTube Channel

If you can, I would so appreciate you taking the time to read my story and donate if you can… I’m trying to raise enough to be able to get a service dog.

My GoFundMe

❤ Gina

Like my Facebook page!

Hey everyone! I made a separate Facebook page dedicated to updating about my health, raising awareness, and educating about invisible illness. It would be much appreciated if you would also share my page. Let’s start making invisible illness known!

The Zebra Life

My YouTube Channel

If you can, I would so appreciate you taking the time to read my story and donate if you can… I’m trying to raise enough to be able to get a service dog.

My GoFund Me

❤ Gina

This slideshow requires JavaScript.