Coronavirus Disease 2019 (COVID-19)

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remembering to be well

My story -

I grew up in the 80s/90s where being “double-jointed” was just a weird quirk/party trick. Well, the women on both sides of my family were affected pretty hard by the hypermobility.

I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unairconditioned in Texas. I was helping my mom with dishes when I started to feel slightly dizzy, so I held onto the counter-top.

When I woke up after fainting, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.

And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.

Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).

So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, bursitis and inflammatory arthritis – after years (as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid in March 2020.

When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind.

I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who loves interacting with other humans. But those "friends" are all gone now and the loneliness of

My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.#AnkylosingSpondylitis #Bursitis #ChronicPain #Depression #EhlersDanlos #JointHypermobilitySyndrome

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The Darkness and the Road to finding the Light

As Mental Health Awareness Month draws to a close, there is a lot I want to say, but the words and thoughts swirl. This isn’t a pity party, it is what I hope will show strength and dignity… but most of all acceptance to say “I can’t keep going this way”.

To look into the eyes of darkness and to realize what it was and to stand up and say “I need help” that and even now was one of the hardest things I ever had to do. The biggest part of this journey is saying “Suidcide is Selfish”, in a lot of cases, that is so 100% not true and comes from judgment towards someone who is sick. “What about my faith” some would ask, my faith is the only thing that kept me going in recovery. It was the same talks by Jeffrey R. Holland and Dieter F. Uchtdorf that kept me going.

What has the journey over the past year shown me…. I was given a deck of cards stacked against myself and my husband that we had no choice but to keep drawing losing hands.

I suffered a severe Traumatic Brain Injury on 12/31/2019 and by the time I was ready for all the help I needed to recover, the world shut down. No physical therapy, no speech therapy, and no occupational therapy. We met with my sports med doctor, but even to meet with a Neuro back Opthamologist… I had to wait. I waited until almost July to receive treatment and only then, did I receive Physical Therapy. It became my husband and I to figure out how to do other parts of my recovery without medical care. I eventually became the patient and the caregiver over time… gone was “NO, it is too soon for this” and it had come to me challenging myself to do things. Not having patience, grace, and empathy.. It was “You know you knew how to do this before so go do it” I would fail each and every time. I wouldn’t rest my body, I kept going and kept having setback after setback.

When we moved to Utah, I felt like I HAD to be better. I didn’t set up the help I needed and the masking of life began. strived to mask my injury, the subsequent lasting effects I was trying to get over, and the mental exhaustion. I went and did things I was 100% not ready for and when I couldn’t do it… I thought that everyone was passing judgment. I didn’t want to be the patient anymore

Social Media was no help, I had joined a few TBI survivor groups that also had caregiver members. Little did I know what I was reading was not someone in my position as a patient should ever read. Caregivers divorcing their spouses left and right because it became too much over the years. I feared 100% that I was going to lose my world and hurt everyone because I, the TBI patient, could not figure out life at all.

Last fall, I hit about the lowest point. I was about to learn the lesson I hated most “Time was my enemy and Time was my friend.” I sat in the dark about a year ago, with a bottle of pills. I felt so lost and I was angry. I didn’t know why…. But I was just angry at what I was. Existing to Fail. My only accomplishments were failure in my eyes. I had failed myself, my husband, our blended family, my family, my friends.

I did end up taking the pills and regretted it. I felt like I didn’t deserve this amazing gift of Life Heavenly Father gave me. I learned in the week after, I wasn’t alone. People showed up, we had a support network for myself, my husband, and our kids. I wanted to recover in dignity and we tried to have our kids outside of the darkness I was battling.

However, my entire life shut down again. No working, no household management, nothing… I was to sit and recover. It was as if it was early 2020 for me all over again. I started therapy immediately and until I could get in for my first session, #988 became a lifeline. I used every tool I could get my hands on to stay safe. Things changed rapidly and it wasn’t until Thanksgiving I was even able to cook again.

As I started to recover, I realized, while Covid took a lot from everyone, it took my recovery. I did not have the care I needed to be safe and to recover. We did the best we could and the strive to not fail was a perfection that I would never achieve.

1 year later, I am healthy. I realized I wasn’t selfish for wanting to end it all. I was in a place that felt extremely hopeless. One thing didn’t just put me there… It was time and a series of events that I didn’t have coping skills to handle.

People with TBI’s no longer have fully functional brains and no one injury is a like. The chemistry is altered and things like ADHD meds, Anti - Anxiety Medications, and Antidepressants are hard to figure out because your brain has some mis-fires.

Even beyond that, you can’t just go to someone who is depressed and say “Cheer up” and expect them to be like “OHHHH I hadn’t thought of that” Often depression is someone that you can’t find your way out of. Life compounds on it and you don’t have a healthy outlook. Some, like me, won’t ask for help. We feel as if we have become a burden

Often we hear after someone chooses to take their life “I never suspected they were in trouble” however, you look and start to see the signs that something wasn’t okay. Take those signs and be observant. Anger is often one of the signs someone isn’t okay, they are just angry at everything and it’s because they don’t know what is going on. Complacency is the scariest part, they are accepting that there isn’t help and now how are they going to fix it themselves.

It isn’t selfishness at all, it is being so far gone in a thick, dense, black fog, that light can’t reach. The person is normally scared, unsure what to do, and looking to stop the hurt. No one wants to be in pain.

A year later, I am 100% on a good path to continue to recover… I can say I remember a year ago, and I still have to remind myself to breathe because it scares me what I was in. I am safe now, but that place was the scariest unknown I have ever been in.

While everyone could have said “you need to do this”, it was ultimately up to me to do the work to get better. I had to look long and hard in the mirror and want to live for the person I was staring at. Looking back at pictures, there was no life in my eyes or my smile. I was faking every second. I now know I am worth something and I pray I never go back into the darkness. I have safeguards in place and I now know the path I was on, it wasn’t anything I could fix. I needed medical professionals to help me recover from something that took away my ability to walk and talk. My husband could not be a caregiver 24/7, we had kids to keep entertained in quarantine, he had to work, there were things… we just didn’t know the lack of medical care at the time would impact me so greatly years later. People can mask and act like it’s all good and be hurting so much on the inside…. And the biggest lifeline anyone in any relationship has… is communication.

#SuicideAttemptSurvivors #Suicide

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4 years , 7 specialist and no one knows !?!

So to start off

I have depression since I was a kid and was diagnosed with BPD in 2019 after a failed attempt on my life , I ended up 1200 feet at the bottom of a canyon in my car with a broken neck and back !! I have long since fully recovered !!

So my Dr thinks I’ve been Covid “ vaccine “ injured !!
Not going through the hole Storie but I will tell you my symptoms … I have Vertigo , Tentunus - loud in both ears , very low energy and I have gone def !!! And it all started a week after the first shot !!!!

After 4 years and 7 different specialist , different meds and lots of tests , no one has any idea what is wrong with me !! 😟😢

My Dr says , the reason no one knows what wrong with me is because no one knew the side effects of the Vaccine when we were told to take it !!
I’ve been jabs 3 times with the same Vacc !!

This sucks so bad I’ve thought of taking my life many times to end this suffering !!
How will this ever be fixed if NO Dr or Specialest will listen to me when I talk about the Covid vaccine !?!?☹️☹️🇨🇦
Why are Dr’s so afraid to talk about this or help ?????

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I never asked for this Covid Vacc injury , over 4 years of this Bullshit !!!

OMG !! This has to be one of the worst days , more than usual I’ve had in some time !!! Can’t seem to wake up , can’t hear anything but the loud ringing in both ears and I’m off balance !! Like what the fuck !!!! I really want this to stop !! I feel so alone 😢🥹☹️

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Dark Design

I've made a few designs for T-shirts that I sell on a few sights. I started doing this when Covid hit and I started working from home and had less hours. The point is I guess is that I've been feeling so sad and low, just hopeless and feeling hatred for myself and everyone. I feel like I just don't care about anything anymore.

I designed a T-shirt that is simple but just very dark and I put it up on one of the sites that I'm sure no one I know goes to anymore. I chose not to publish it at the last minute but it is there and I can make it public whenever I want.

I've got something to do that has been a long time coming but I just need to put things in place before that time comes. I think it might be soon. Just not soon enough.


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Today I have a plan

Yesterday my caseworker called me to find out how I was doing since we had to cancel our session last week due to me being sick with con crud. She told me that there is an event going on at my facility that I go to for my mental health services. They're doing what's called a vax bash. They're doing vaccines for COVID and the flu and a few others. They're also serving lunch and I guess there's door prizes. It sounds like a fun event. She said she would try to get me transportation to go but I haven't heard back. I really hope I can go.

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When will they understand #exhaustion ?!

"If you would just exercise more, you wouldn't feel so tired". Are you freaking kidding me?! Remember when you had COVID and could barely walk to the bathroom and back to your bed without wanting to collapse into a puddle? THAT is how I feel after 2 minutes of exercise! Argh!!! #frustration #AutonomicDysfunction #HypermobilitySyndrome #cancersurvivor

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