Views from my hospital room consist of my very sexy fian-bae who has been nothing short of amazing. But that been the only part of this that has been a relief and pleasant.
This medical system that America operates under is broken in so many ways. It took 5 ER trips during the month of May to be told by said ER doctors to go to a different ER for more advanced care. That hospital then had to transfer me an hour away to a hospital with a team of neurologists that have been very helpful in wanting to find a solution and to help me. And also, more so than any of the doctors I have seen at the other hospitals at which I was begging for help at.
But I don’t want to miss the point of this post. I have spent 106 hours in a hospital bed ion a hospital that is one hour away from my home. The point is is that when I started having very concerning symptoms that coincide with my pseudo-tumor (Idiopathic Inter-cranial Hypertension/Spinal fluid buildup in brain) no on was willing to do anything about it. I just kept getting spinal tap on top of spinal tap. I have these headaches due to the spinal fluid buildup in my head that even the doctors have had a hard time “diagnosing” what is the root cause of the headaches. It is literally being dismissed as headaches/migraines. And I do not have a history of migraines. However, I was awake fighting excruciating pain for 12 hours due to these headaches that accompany the pressure buildup.
What I do have is a history of Chiari Malformation (brain too big and pushing into my spinal canal, had surgery on 10/02/2019). CTS is a complication of the Chiari Malformation. It isn’t happening for no apparent reason at all. It is happening because I have a chronic illness that has several additional co-morbidities with it. It is as if the doctors prior to my admission were only looking at the smaller piece of the puzzle instead of the whole picture. And that is what the problem is here.
I have now been in the hospital for 106 hours without a solid answer to what is happening or what the treatment plans are . I have been on heavy pain meds since May 9th. Which with each pill or IV drip I feel like I am losing grip on reality. Being in a medicated bubble is not fun or healthy. I finally have a small amount of cognition to take you on this journey with me as I am here at the hospital and attempting to find a pathway forward.
This medical system is so broken that it sees women, especially women of color, as faking their pain for meds. Too many times have I been dismissed for making it up in my head or just wanting to be on pain killers. And there are far too many stories like mine out here. I hate this whole process because I have been here for 4 days with only minor progress or even an inkling of a treatment plan. The medication I was on a high dosage of is supposed to help reduce the fluid build up in my head. But because I am on that med, it now has to be stopped, because I am having further kidney issues that are causing them and me to be acidotic. So now I am not on any meds for the fluid build up but also not considered a candidate for a VP shunt to help the flow of fluid that I am currently not getting. How does that make any sense?
I would essentially have to come back when the fluid starts to cause vision issues and swelling of my optic nerve. What they are telling me is that I have to wait until a situation that can cause me to lose my eyesight partially or completely and then I will be evaluated for a shunt. And none of this will be treated as emergent.
I have spent now a total 136 in the last month either in the hospital via ER or the hospital via admission. And I have lost so much of me my memory, my time, myself. I feel like a shell of a person and this medical system is broken and it needs to be fixed.
I am angry. I am tired. I am in pain. I am not happy. I am depressed. I am scared. I need help.
I keep begging for help. Screaming and crying for help and it feels like no on is listening,
The views from my hospital bed is beeping machines, an IV drip machine, IV’s to point of blowing veins from it, blood drawn multiple times a day and that is causing bruising and swelling. My fiancé having to hold me while I shower or change me. My fiancé having to stand by the door while I take an excruciating bowel movement and trying not to pass out because of the pounding headache. I have nausea medication and a purse full of emergency throw up bags. I have a white board with words written all over it with all of my vitals. I have so many different views of the grim and sadness that happens to patients when their illnesses aren’t being treated with care but with ego.
It is a grim grim view.
I feel like I am losing myself in the battle of trying to rescue myself.
What a paradox.
💜🙏🏾✨
Nia, this is heartbreaking to say the least. I have experienced and still continue to experience severe incompetence and negligence here in NYC when it comes to “medical professionals” and compassionate care. I continue to relive the PTSD I suffer from now brought on by medical negligence where I almost died, the week of Christmas in 2013. The medical neglect including malpractice dates back to my childhood not just for myself but my mother as well. People do not understand what medical trauma is all about. And I am so sorry you are experiencing all of this. I am glad that you have someone supporting you and standing by you every step of the way, your fiancé. He is a god sent. I unfortunately have no one and because of all of this and so much more shit I’m in therapy and trying to relocate. I’ve almost been killed during a hospitalization as well. This is a lot to deal with hon. And you are always in my prayers. I started following you on Instagram a few months ago. It never ceases to amaze me though how strong you are. But sometimes we do need help and we need someone else to intervene. That man of yours is a blessing 💜💕🙏🏽Please Nia don’t give up, keep fighting, you’ve been through so much and you are still here alive and kicking! Keep sharing your experiences with us. You are a beacon of light and hope for all of us survivors!!! We love you!!!!
It’s sick how common it is brain sister! What happened to the old bone connected to bone song; thats the same thing with the brain people!! Why are doctors only concerned with one thing or the small picture when everything is connected! Why did we change from helping people to only helping what i “specialize” in! Need to reform the medical system for sure. Hang in there girl!
I am really pulling for you, you are nothing short of amazing and your journey will continue stay strong and know you have a huge support of people you haven’t even met in person. You got this.