So the world has been chaotic and a pandemic has struck, I have not written in this entire time a proper thought out blog post. I mean a lot has been happening. I been learning so much about myself since I told everyone here that I am in fact Autistic.
In 2011 I was diagnosed with epilepsy and I thought for sure that explained other symptoms I had been having for many years. Dizzy spells when standing, fainting climbing stairs, you know must be seizures?
When I learned my PDD – NOS diagnosis was an autism diagnosis I joined a great facebook community: “Sounds like you should ask an Autistic, but ok” and, “I’m Autistic and I’m gonna kick someone’s ass.”
There I met a wonderful person who I respect greatly and who talked me through my most horrifying experience at that time…I thought I had a heart attack last July. I was shopping for cat food in a local store and bent over and bam my arm hurt my chest burned and tensed and my vision blurred. I went to the ER my blood pressure was OUTRAGEOUS 198\ 113. Funny no days when I go in and doctor takes it i’m not as shocked anymore. Like last night it was 138/102. That day i was SHOCKED. I had only seen my blood pressure be low not high like that.
My new friend and the group members of those two groups helped me connect this event to something I had never considered before. The constant dehydration and need to drink was not onset of diabetes… I might have POTS.
A year later I have learned my blood pressure fluctuates, my heart rate is fast and I match many post symptoms. I am also back on all the meds I need to be on except for proper meds for POTS, though my doctor does have me on a beta blocker. I am back on seizure meds, back on Adderall for ADHD, I am still on thyroid meds and I am back on testosterone. I also have my asthma meds yay me!
So now we are at where I tell you why the click bait title. With a global pandemic and me being a disabled asthmatic getting meds isn’t always easy. Last week I had no meds, no adderall or depakote anyway. So for a week I went without Seizure medicines and I began to slowly have seizures again. Well last Thursday I was able to get all my meds and I start taking them over the weekend. Still having problems and I was not 100 percent yesterday but I felt “better”.
I mean sure it was raining, but my kids all wished me “Happy Father’s Day”. I was given new hedge trimmers and I had a lot of gardening I been wanting to do. Sun finally came out it was warm and dry…. I turn on the hedge trimmers and in a moment and I don’t know how it happened I sliced my middle finger. Anyway the answer to “How is Damien doing?” Eh at least I still have a middle finger!
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By Damien Knight
For the past 11 years I been struggling with a list of unusual symptoms. It started soon after my son was born, back pain, numb legs, leg cramping, hip and joints burning. As the years went it has gotten worse. It’s hard on me because as a geology major who wants to work in the field having to walk with a cane bites.
My legs go numb, my skin burns. I always hated being touched. It hurts to be touched. What hurts worse is wanting to hug my kids and the pain is so bad I can’t. I don’t know what’s wrong with my body. We have done test after test. There is no reason my legs are falling asleep and then burning like fire. They found nothing wrong with my back and hips. I started taking Aleve daily which helps dull the pain but not erase it.
Today I stand. Today I walk. Today I hurt. I will push for tomorrow. We will figure this out. In the meantime I remain strong and hopeful.
By Damien Knight
As you all know, I have moved into a new house. What you might not know is I suffer from chronic illness. This weekend I posted a poem titled Invisible which captured how I felt dealing with having to unpack an entire house with just me and two kids. I am exhausted, stressed and in constant pain. I know I shouldn’t complain about it but isn’t human?
Absolutely! And not only is it natural and human to complain it is human to want compassion. I have arthritis, Hashimoto’s, Asthma, epilepsy, GERD, and depression brought on by the fact I have had no medication since December due to insurance issues. It gets frustrating just trying to get out of bed. With a thyroid disorder sleepiness is more than just a symptom. It is a way of life. I have trouble sleeping at night and keeping my eyes open in the day. I live on coffee.
In fact, I bet most of you also live on coffee and you don’t even suffer a thyroid problem, right? Or maybe you do. The point is many of us struggle with just getting out of bed. I slept a lot as a kid, the depression so heavy sleep was better than living. Today’s Motivation “Every Day begins with an act of courage.” So true. For me just getting up means the depression, the chronic pain, and Hashimoto’s does not beat me. My illness will not define me, hardships do not have to define us. Be proud today you got out of bed.
Written by: Damien Knight
Below is an old blog post from a former blog I kept. The post was a medical update from five years ago. Since then I had learned that my doctor wanted me on EFMP for asthma and epilepsy. I have also been diagnosed with Hashimoto’s disorder and the bipolar diagnosis turned out to not even exist in my medical records. I lived my life medicated for a disease I had no diagnosis for. This blog, I created it because I wanted to share the good and the bad of life.
“Ok, in a week I learn what my blood results are. Since the doctor wants me on the EFMP (Exceptional Family Member Program) I know something’s up. Most likely this is for my past diagnosis of bipolar. A diagnoses I am now trying to contest and get a re-diagnosis. I Have to get an MRI for twitching and fainting spells which is why my friends I keep leaving the bar on Tuesday early. My worst twitching episodes happen at about 10:00 Pm and it is embarrassing for me to have others see me smacking myself.
Anyway, I get that done Friday and Wednesday I go see a doctor for an evaluation of my blood results. I need to talk to the doctor about this damn black spot that appeared on my eye. I have been having these problems for months (the twitching migraines and fainting problem) it took Akron dragging me to the doctor to do something about it. My own concerns had been so focused on my personal displeasure at being born in a female body that the health of said body really didn’t matter.
So, I had a conversation with Aaron last night. I asked him if it was normal to see what I could only describe as television static in front of everything one sees. He told me no.
So for my friends I ask is this normal? I know the silver static that blocks out my entire vision is not normal but my vision is always blocked with light static in front. I wonder is it normal?
Update: So, this was before they diagnosed me with hypothyroidism and epilepsy. The lump I spoke of on my eye in this prior journal turned out to be a blood tumor and I just had surgery on it after two years of ignoring it.”
As I make my journey, I intend to keep updating everyone how I am doing. I am a poet, novelist, father, college student and many other things but I am also a Trans Male and I know there needs to be more visible Female to male trans people. That we need to be out there discussing our happiness and our struggles. Thank you and please feel free to support my transition here: The Shadow’s Journey.