Yesterday is gone thank goodness! After having the weirdest dream I think I could have ever had, social security decided to call; I am so done with those people! It’s a great thing I had counseling after that phone call.
My counselor could tell that the only thing that really got me upset that day, even after a little misunderstanding before that phone call, was that phone call.
Seriously people stop screwing with me already! Either give me help or don’t. Give me the insurance I paid for or don’t. It’s ridiculous to me this American system that we have. Seriously I’m so sick of this!
So anyway, yesterday was just a long day. I pushed myself further and longer than I should have. I had a stool and sitting, but just being upright since 6:20am killed me. I was wiped out after the morning, but I had stuff I wanted and needed to do, like pick my 16 year old up at work at 3. I also wanted to make some custom masks and shirts for my God-daughter for pre-k, she starts today.
If only I could tell you just how many breaks I took, just how much pain I was in, how exhausted I was. I am so beat today! I am so glad that I don’t have to do anything until it’s time to pick that 16 year old up again at the same time today. I am so tired and so sore.
I need to wash towels and do the dishes. My bathroom needs to be cleaned. I need to cook dinner. I need to fold/hang/put away my clothes that have been sitting in baskets for weeks now. I need to call the doctor. I need to do so much, but I’m so tired and I just can’t find the energy. One day of living my life and I’m down for the next several.
Social security is a joke and the system like the rest of it is rigged. They make you fight and wait hoping you’re credits will expire or you’ll give up or die waiting (which is most common). I’m so physically and mentally disabled, and mainly mentally disabled because my physical health makes me more depressed, more emotional, more everything.
Today’s musts are call the doctor, the dentist, and schedule IV fluid therapy for my P.o.T.S. I just can’t seem to get hydrated enough to feel good. I keep getting distracted and forgetting to call.
So this picture is real. It’s my exhaustion. It’s my mental and physical state all captured in one. Yesterday was a rough one. I’m glad it’s done!
June 2016 I was at an amphitheater that has changed hands so many times I cannot even tell you what the name was when I went to this particular NIN show. I believe it was Bank Calumet Amphitheater at the time in Tinley Park Illinois, but again I could be wrong.
Anyway, I was there in the lawn on a date and the best thing about that night was NIN, like my mind was blown! There is nothing better than experiencing Trent Reznor belt out Closer live, nothing I tell you, noting. His voice, the bass, the sounds, and the lights…wow! I mean the recordings, as good as they are, just don’t compare once you’ve heard it live.
Oct. 27, 2018 my love who knows how much I love to eat at places that been on Triple D on Food Network, surprised me by taking me to Kuma’s Corner in Chicago right before our first NIN concert together. The food Amazing! Go I highly recommend the Slayer Burger which is bun-less and way too much food for two people.
This is where this story becomes a huge part of our love story. This was the first time my love and I saw NIN “together”, but it actually wasn’t. In June 2016 we were both at the same NIN show. I there with the wrong person in the lawn, he there with the wrong person/or people as well, but we were there “together”, we share the memory of that day, my first ever NIN concert, but just a little differently.
We have also figured out that this was the first of what would turn out to be many shows he and I have been at “together” but apart. We’ve shopped at the same stores, eaten at the same places, I mean he ate at the White Castle down from my house in College and I was in high school…
We’ve wondered how many time we’ve crossed each other’s paths without even knowing we would find each other someday. This particular NIN concert with the love of my life standing next to and then behind me with his arms around me…no better feeling!
This NIN concert also lead to me diagnosed with P.o.T.S (Postural Orthostatic Tachycardia Syndrome). I’ve struggled since puberty with this condition undiagnosed and I am so glad that the man that I was at this NIN concert with on 10/27/2018 is the man he is. We had perfect spots and he ended up giving those up when I fainted, and then I couldn’t stand to enjoy NIN perform. So here I am with the hottest sexiest song starts being played and I can’t even stand with the man that I love. Missing standing with him while Closer played was a bummer. I had looked forward to it, but at least I got to sit in the back and enjoy the music.
I love our love story, it’s so full of twists and turns. We often find things, still after almost 4 years that we did “together” apart, like my kids trick-or-treating at his dads house for 4 years before I knew him, and yet he said he would usually be at his dads during that time, so I’m sure we’ve crossed paths even then.
NIN is a part of our love story, and that’s amazing!
My sons are the sweetest! I’m pretty certain as sweet as they were was because of me, however I think they’re as sweet as they are to me now because of the way they’ve seen their dad treat me over the last four years.
I’ve been spoiled and treated like a princess. I’ve “wined and dined” although I don’t drink wine and dining is sometimes a meltdown waiting to happen. The menu causes me anxiety so I’ve learned to read the menu and pick what I want before I go. Because their dad said, “you know I think the menu causes you a lot of unnecessary stress and I want to treat you to a nice meal that doesn’t cause you to panic.” And even when I do meltdown and cry at the table he is reassuring and understanding. He’s even realized that the darker the atmosphere the more likely I am to eat a full meal…dark environment meant for the first time ever I ate a 14oz steak and a baked potato…a full meal.
My sons they hear him comfort me and reassure me when I tell him to, “never take me out again because all I do is ruin everything”, damn Autism! They reassure and love to spoil me too now that they like dad work.
I have to admit it’s a little awkward and uncomfortable sometimes and I always feel like I need to do pay them back or do something special for them in return. They make sure to know that I am offending them by that mindset of mine.
These fine young men make me feel like I’m the most special person in there life, even when somedays I can’t feel it. I once told their dad that, “I’d be honored if my sons turned out to be half as good as he did”, and you know I taught the fundamentals. I taught them the basics. I was mom/dad when their adoptive father was too ill to be dad. But my Love came along and showed them how to treat a woman. Really treat her.
Even through the ugly and bad he is showing them how to get through it. He showing them that mom is struggling and she loves you and this is how we help the woman we love get through these things. He is showing them that loving a woman and a family isn’t easy, and most of all he is showing them how to love through it all.
So let’s talk about the title of this blog; “These Bad Boys”. Well I bet you thought this would be a complaint post, but actually as you see its not. What I’m actually referring to is this photo:
These air pods fell out of their case that was clipped to my key chain in my “Gameboy” case( I finally got my Gameboy, 😂 read the green leash blog) and clipped to my Love’s belt loop. We lost them on Labor Day at the Kankakee State Park. We had walked the trail and it was a beautiful day.
Well Wednesday night I wanted to use my AirPod Pros, opened my case, and they were gone. I immediately said, “I think someone ganked my AirPods out of the case. My son bought them for me and I was sad that we lost them and I was certain they’d be gone.
Well Thursday I actually won one. Finally! We took bikes and rode the trail and found them off the beaten path. I fell before we found them off the bike. I had some kind of heart episode that I chalked up to P.o.T.S., but now we’re not so certain.
The first incident was scary enough resulting in some scrapes and bruises, but I didn’t careen off the cliff into the Kankakee River and die. I chose to go limp and drop onto a very cushy, yes very cushy tree root system. It had clearly had the earth cover removed from it because of the rushing waters of the river when it’s flooded over; the roots were rotted and soft, and I knew my chances of getting hurt were small, so I told myself “go limp” and I did. With minimal injury just superficial scratches and some bruising.
On the way back from finding the AirPod Pros, I felt like I literally had a heart attack. The sad part is that I couldn’t go to the hospital because had it not been a heart attack and just my P.o.T.S. I would have been forced to pay the bill because my Indiana Medicaid is only allowed to be used out of state in a “true emergency”. You see if I had Medicare I could have called an ambulance if I wanted or had my permitted son to rush me to the hospital just down the road. But nope I have insurance that is only allowed to be used in Indiana.
I called my doctor the next day, by that point since I wasn’t having any real symptoms at that point, besides some discomfort we believed was from my heart being 200bpm or more. By the time I came through and looked at my Apple Watch ⌚️ my heart was at 184bpm and my chest hurt so badly.
This pain in my chest was like no other before. My whole left breast all the way up under my armpit, around to my back and it stayed pretty much on the left side, and up into my shoulder and neck. I did not have left arm pain in any way. I couldn’t catch my breath and I was profusely sweating.
I threw the bike and myself down and said, “No, no, no I have to sit my chest hurts”. I begin stripping my clothes off right there on the trail where I was sitting. My 17 year old right there and I absolutely could not say “I think I’m having a heart attack”. I lost all track of time I don’t know if it was 5-10 minutes, or 10-15, or 2 minutes, but my son said that I didn’t look good at all. He was quite worried. In the car I told him what I had thought had happen. He was as cool as a cucumber 🥒 and kept asking if I was ok.
He began suggesting getting something cold to drink and he was glad that I had not panicked at all because it “would make it worse if I was or did have a heart attack”. Me I didn’t panic once. Even telling myself, “if I panic or get upset in anyway they won’t believe me and they’ll chalk it up to anxiety and a panic attack.” For so long we have trying to figure out this flutter and cough and swelling, and so much, well maybe I should have told my doctor what I thought it was a long time ago, not fear it, but speak up.
I see him Thursday and I’m pretty certain I have CHF and have been in CHF for a while. You know I want to be a doctor and I am a horrible patient. Probably because I know my body, I’m kind of a Medical Savant. Like I’ve always known medicine and understood things about the human body without any formal training. When I was around 10 I visited the nursing department at Purdue University Calumet and I got at 98% on the nursing school entrance exam. The head of the department said they should advance me to college, I think she was joking, but I think she was serious too.
The worse patient because I’m usually right. I don’t want to confirm CHF, even though I know it is manageable and that I can live a happy healthy life where I manage it and help my heart do it’s job more efficiently and effortlessly. I’m pretty certain the stressful life I lived has caused a lot of this damage. I know it’s also partly genetics 🧬. I’m just glad I have a team of medical professionals I trust.
I’ll see what is going on Thursday. For now I’m just taking it easy. Just relaxing. Trying to keep my heart from spiking in rate because if it spikes I cough and can’t breathe or catch my breath. So just going to chill for a little. If you’re the praying type, will you pray for me. It’s scary at 35.
All in all we found the AirPods and I feel like I won one. I had a great dream last night. I know I must pursue medical school and that God will help my doctors get me through. God called me a “Medical Savant” in my dreams last night over and over again I heard it. I have never referred to myself like that. Makes sense though. I will be Dr. Ge someday. So please pray for me.
I am not sure how someone like me with P.o.T.S. is supposed to do things in life right now. One things we cannot do is stand, but almost everywhere we go right now seems like there is a line just to get in the door.
I totally get and understand why, and honestly appreciate how well our society is approaching the Coronavirus, even if our federal government is failing us. It just sucks. I hate need long special attention and I fear asking for accommodations to make my life a little easier.
I get annoyed when my love is always asking anymore, “Do you have a gluten free option?” To constantly need accommodating wherever I go is a little bit frustrating.
I seriously don’t need to bring attention to the fact that I have these issues every single time I’m anywhere new. I hate being the center of attention or that “picky” person.
My love though he is my hero like always and asks and now I’m starting to be okay with asking. I initially panicked when I pulled up to the BMV and saw the line to get in. I was like, “Oh no! What am I going to do? I can’t like go in that door without cutting in front of all these people, and I don’t want them to think I just skipped ahead of them. Oh man!”
You know I got out of Pria (my Prius) and walked to the front of the line and asked “Do we have to get a number?”, the other customers informed me of how it worked. I was replied, “oh I’m well if I stand in this line I may pass out because of a heart condition.”
Quite opposite of what I expected people were like “go inside this door and they’ll let you sit inside we don’t want you passing out.” People were actually understanding, not rude, and helped me get inside to a seat so I wouldn’t get sick unnecessarily.
It’s so hard for me to speak up for what I need. It’s extremely hard for me to get my needs met. When I was growing up I struggled with not only living in an environment that wasn’t very nurturing to the needs of my brother and I, but I now know Asperger’s Syndrome Autism and ADHD. Those conditions already make it hard to not only express needs, but to get them met.
If you don’t know how to ask for what you need, you won’t. If you do figure out how to speak up for what you need and you’re met with nothing but ridicule, and remarks of “get a job” or “want in one hand and shit in the other and see which one fills up faster”, you learn that what you initially thought to be true is true…”silence is best and you need nothing”.
Once you’ve been met with so much negativity around your needs you automatically assume that what you need is insignificant and that you don’t deserve anything.
I know that’s how it is for me. I’m so shocked that I got up the courage to ask, and quickly. Now I am sitting down waiting for my number to be called and I’m not having my heart race feeling like my blood is in my feet and I’m going to pass out.
Even though my heart was pounding like crazy getting out of my car knowing that I needed to ask that hard question, “What should I do?”, but I did it. I told security, she got me a seat, the lady got me a number and did my VIN check while I wait. She explained that I didn’t line jump that I was actually the next one to need a number. I was happy by this. I would have felt terrible if I got in before someone who had waited longer than me.
Love thank you once again for giving me the courage and confidence to do things like this for myself. You are a true leader. It’s because of your “annoying” example that I am getting secure in the fact that, “the whole world won’t end” if I ask for what I need.