Editor’s Note: This is a piece written by someone who wishes to remain anonymous. We are respecting their personal privacy while still publishing this important column.
At times, I can get away with watching some TV, so I am not just concentrating on my pain. I mostly fast forward through commercials but what I have seen lately hurts my soul.
Here I am, laying down icing my head with my heating pad on my back; a regular occurrence. My head is stabbing with pain, and the pressure that accompanies it is pretty intense. I recently had my occipital neuralgia epidural nerve block shot bilaterally into the occipital region of my head. The pain from occipital neuralgia can bring me to my knees. I’ve temporarily gone blind due to the raised intracranial pressure in my head. This build-up of cerebrospinal fluid (CSF) around the brain and spinal cord collects in my skull. It puts extra pressure on my brain and the optic nerves in my eye(s). This can mimic the symptoms of a brain tumor. This build-up of fluid and pressure has also created a CSF leak. The fluid comes out of my nose.
From there, spur the complex intractable migraines. I suffer from head pain every single day. There is literally not a day that goes by for the last five years where the left side of my head does not hurt. The multiple pitch ringing in my ears (tinnitus) has never gone away either. That condition on its own has brought people to suicide, sadly. But what’s the cause of all of the above for me? CVST.
If you’re wondering, CVST stands for Cerebral Venous Sinus Thrombosis. In my case, due to circumstances, the large clot in my venus sinus calcified. An approximate 2-inch calcified blood clot lives in my brain forever. The transverse sinus is the “drain” for your brain, where your spinal fluid (filtered blood) drains out from your brain to then get recirculated through your body. I’ll try to explain my case in the most straightforward way. Because I have this calcified blood (think hard rubber) clogging my “drain,” the spinal fluid can not drain at a normal rate. This, in turn, causes a fluid build-up which then spearheads all of the above issues.
I have suffered from multiple clots at once: the jugular bulb and internal jugular vein, basal vein (Basal vein of Rosenthal), temporal vein, and the greater saphenous vein, as well as the transverse sinus. Lucky enough for me, I’ve lived, but many, as you can imagine, don’t.
If you are as blessed as I have been to live to see your family, nature, and breath fresh air again, know that some people are not this lucky. Many become paralyzed. What follows is intense physical therapy work and many complications. Complete lifestyle changes are nearly always required. This is not just simply “you’ve had a stroke.” Strokes are not minimal, and they are not easy. They exhaust every ounce of you for months and more. Your body will never be the same again. But you’ll try damn hard to make the best of it.
Some are on blood thinners for life and become what is known as a “lifer.” I was on Lovenox (Enoxaparin sodium) injections where my father or I had to inject my thighs twice a day for nearly two years!! (That’s approximately 1460 shots/injections for those of you who are math haters.) The bruises alone from this were just really miserable. Then, after I achieved some stability, we tried to switch to pill form (Eliquis and Xarelto), but unfortunately, my body had an allergic reaction to these, and, among other things, I lost 2/3 of my hair in a matter of 3 weeks. Luckily, I had a doctor who listened and recognized this as a side effect/reaction to the medication and switched me back onto Lovenox until I was blessed enough to now be on baby aspirin for life.
All of this can surely break even the strongest of people. It is true, by the way, what doesn’t kill you makes you stronger. My faith in God has kept me going through. My faith in God is strong, and my support system at home is something I am forever grateful for. But, some people are not in the same situation as I am. Some people don’t have a great support system.
Additionally, the treatments over the years have not been cheap. I don’t mean to sound grim, but I will live in pain forever. In one year alone, at a minimum, my health costs are about $10K per year (out of pocket). Not to mention the other lifestyle changes and adjustments I have to make that are costly as well. To give a basic example of cost, my Lovenox shots (after insurance) were approx $1,600 out of pocket for a one-month supply. I needed these to live, and when you need these blood thinners, you don’t just need them for one month. I often wonder, what do people do without insurance or insurance that doesn’t cover that alone? How cruel to be put in that sort of situation, but we can get into that another time. Luckily, I am blessed with good insurance.
This brings me to the thought of how it pains me to hear “The vaccine is FREE!” like it’s some sort of gift. It boils my clotted blood because if you are injured with a clot from these FREE vaccines like it’s some sort of treat, your lifetime supply of treatments and medical bills are NOT FREE. According to many employees of the manufacturer(s), “Your body is your responsibility.” And in turn, sadly, so is the cost to stay alive. Who pays for that? Not to mention the cost of an MRI, CT scan, MRV—the list goes on and on.
To move on to the topic of why I am icing my back, as stated at the beginning of this opinionated thought vomit, approximately one year after I was diagnosed with all the clots and started to get slightly stable, I began to take on the next issue of my body pain. I was quickly diagnosed with MCTD (Mixed Connective Tissue Disease) and SLE Lupus. It has been a rough five years, to say the least. I unfortunately never go a day without pain. Before I was diagnosed with Lupus, I had an extremely hard time even walking across a small room. A few feet was nearly impossible, even with assistance. My feet—they constantly feel like I have walked one hundred miles. My back, my hips, my knees—they feel like they are being stabbed with a screwdriver and that screwdriver is getting slowly rotated. Sadly, I am not exaggerating when I describe all of this. The fatigue makes it feel like I am carrying the weight of a Mack truck. This is only a glimpse of what an autoimmune disease can feel like and do to one’s body.
People are coming forward with some of these symptoms from vaccinations. Does any of this sound “easy,” as the media or paid off “medical professionals” say these ailments are? Do any of the symptoms I’ve described sound simple to deal with? The media make them seem like no big deal. Many people have a long road to diagnosis, and they suffer for years until they can get treatment after that diagnosis. After my diagnosis, it took 8-9 months for my Plaquenil (hydroxychloroquine) to start to control my Lupus and the flare of a lifetime, but after it started working, it gave me the ability to begin walking again. I am forever grateful for this medication that many people in mainstream media for the past two years have called “poison.” How dare they do this and make people question that same medication that keeps me and others alive!
Having autoimmune disorders and clots, stroke, and TIA are not issues that are just “one day and done,” They are not common—no matter what people on TV or in fake newspaper articles or propaganda might say. They are a lifetime thing. And having clots and CVST isn’t “as common” as they make it seem either. It was extremely hard to find a doctor (and this was throughout multiple states) who even knew how to treat me or even understood the condition. I saw people in top facilities, and even they said it was extremely rare. At the time of my diagnosis of CVST (approx 2016), the stats according to Hopkins were as follows: .0005% of the U.S. population are impacted by CVST annually (or 1,625 people) of that percentage only .0001% of U.S. population (or 325 people) suffer from calcified CVST. Does that sound “common” to you? Or like some kind of normal occurrence? Currently, hopkinsmedicine.org lists individuals affected by a CVST caused stroke as 5 in 1,000,000 per year.
Through all of this pain and suffering, I had to become my own health advocate and educate myself as much as possible on SLE Lupus and also this extremely rare and dangerous diagnosis and condition. Don’t get me wrong; I wouldn’t be the same person I am today without having gone through all of this and having to educate myself. Unfortunately, I also had to learn what terrible and lazy doctors look like, so I could find amazing, hard-working, caring, and compassionate doctors who actually care about how you feel. Doctors who actually listen and take a proactive approach to help one feel better and get as well as you can be. But also in this crash course, I learned how to read blood results and lab work and correlate it to your body and symptoms. To find links in different levels to those labs and my health, symptoms, and underlying issues. I learned how to research and read medical journals and studies and know what they are actually talking about on the first read-through. I learned how to read clinical trials on new medication and what is in the pipeline for help in the future for people like me. I joined groups and read countless experiences and journeys of people getting help and what they had tried to help themselves—as well as the sadness that comes with all of it.
I also learned how to help other people get the quickest and fastest route to the proper healthcare treatments and ways to help make their lives a little better. I learned how to ask the right questions and help others ask the right questions in their health journey. I learned to read my brain scans, MRIs, CT scans, and MRVs. Unfortunately, I had to learn what a horrifying experience it is to get a Cerebral Angiography completely awake and not sedated in any way. This is a procedure where they entered through my groin and went into my brain. Yes, I said while I was awake and not sedated. You can take no medications to help you through it because any medicine can affect your pressure gradients, which they are trying to read during the test. During this Angiography, I heard and saw everything as I watched on the monitor while they went into my brain. The horror of this experience was unmatched—so barbaric yet innovative and advanced at the same time. Through it all, and having had these experiences, I have been able to help countless people get through hard times with health or life in general.
God has set me up to get through a pandemic in many ways I would have never expected. But he knew. God gave me the tools to help others, and if all this suffering helps others in the future who will now be exposed to these same experiences, well then, I guess it was all worth it. Just helping one other person get through a hard time is worth it. God is by my side for eternity, and he never leaves. He’s never let me down. He is guiding me always. With God, anything is possible—never lose faith in your life journey. I am blessed through it all, and my faith has never wavered. I will admit, this medical journey is a ride that I just want to get off of, but it won’t end; I can’t get off—I am on a never-ending loop of issues that spur all of these conditions. It has led to chronic suffering that no one should ever go through.
So to bring this all full circle, it pains my heart when I hear and see the stories and have researched the complications from the vaccines that are being “normalized” and being shoved down the masses throats on commercials in the news outlets and articles. It hurts my heart and soul to know that people are not being educated on what can happen and are basically being forced into something they are not fully aware of. And when the complications do occur, these poor people who are being told they will “be just fine” and it’s a “normal” thing that will “not last forever.” Where was all of this “normal” when no one knew how to help me with these rare health conditions? Where is all the research and education needed for these people that will suffer every day from autoimmune disease or stroke?
It literally hurts my heart to read stories of people losing loved ones and/or suffering themselves or, to be honest, seeing people I personally know start to see the effects that they don’t realize is the very beginning stages of the last five years of my life. I cry, just knowing some people will suffer as I have. I pray to God every day that I can help them in some way—any way—help them through it.
Hopefully, this letter will help. Hopefully, my story and journey can help even one person feel less lonely or find the strength or faith when everything is going wrong. If you are reading this, the overall message is to have faith. I pray that while people will go through this, they will be blessed with the gift of a smile or a gift of hope. I pray that people who pretend this is all “normal” and “ok” and pretend it has been going on forever and say it is a common occurrence in everyday life realize that in their hearts, they know it is not! I pray they are guided to make it right and lean on their faith to help instead of going on with a facade. They could make a true difference in this world. I pray that people who have found this article who are in poor circumstances will not feel alone when faced with similar things.
God bless, and please always share truth, love, and light.