I've debated since January 6, 2021 whether to share any of this here or not. I've debated starting a new, even more anonymous blog elsewhere and still may. January 6 marked the beginning of a new journey, a new loss, it belongs here, too. My first major loss occurred thirty years ago on January 10, 1993 when I lost my mom. Despite what my father says, I am not broken from it--I experienced complicated grief related to the trauma of having my best friend and mother murdered, which is what many people would have experienced. No, despite what he may say, I am not broken. I experienced grief. My second major loss occurred on April 22, 2010 when I was forced to remove my father from my life and the resulting loss of my paternal family, which was all I had left for family. I was forced to separate from my family and the grief that followed is described frequently in this blog, already. I don't need to describe it further. My third loss over the past two years has been the loss of my health.
I’m not yet ready to tell the beginning of the story, but that may come. Right now, I'm sharing where I am now, two years into the journey. I've spent the past two years fighting to be heard, being gaslit by the medical community, and fighting my own body. I've been told that my problem is just anxiety, just menopause, just being female, just in my head, fibromyalgia, and a slew of other incorrect suggestions from medical professionals unwilling to really look at me, hear me, or see me. It's been unbelievably traumatic and frightening every step of the journey. I have no mother. I have no family. All I had left was me. My body. This has been the third hard loss of my life.
Currently I'm having odd regression in numerous areas (loss of my gross motor skills, legs heavy, arms not lifting, loss of fine motor skills, etc.), and while I am super nervous about it, if my liver masses aren’t cancerous (the MRI for those happened 01/20/23—only 16.5 months after the masses were first identified on 09/08/21 and after the ultrasound on 09/07/22 that showed increase in mass sizes), and if I can get over my fears of its side effects, HUMIRA injections may be happening soon for some of the other pain issues—which remain immense, at this time. Unfortunately, when they did the MRI of my liver, it showed a bit more than expected--including lesions and a hymangeoma on my spleen. This means more MRIs and CAT scans to follow before determining if I can do HUMIRA or not.
I guess one lesion on the liver is fairly normal for women who have taken birth control during their lifetime--two, not so much. My blood markers were elevated as well, so they also aren't ruling out cancer yet--which also means no HUMIRA yet. I am so mad. All of the abdominal pain and issues I have been having and they only looked at my liver lesions. I am beyond angry... Our local healthcare monopoly is the absolute worst. Now I wait for MORE MRIs and CAT scans--more missed work, more vacation time lost--all because I am 49, female, and it's easier to blame anxiety and being overly dramatic than admitting there may actually be something wrong. In the meantime, I'm so over all of this.
I think the hardest part is when I start feeling the slightest bit better, mentally or physically, I get my hopes up and think I am getting better only to crash back down. That false hope followed by crushing defeat, over and over and over is taxing. I am so uncomfortable physically (and have been)--sitting through my work sessions is the devil, laying down hurts, sitting to sew is hard--there is nothing I can do. Sleep is a brief escape, but even that doesn't last long before my body wakes me back up. Mentally, it is taking a toll. This body has felt like a prison for two years now. It's too much. I'm over it. I'm not suicidal, but I wish I had an escape from this. I haven't had a symptom free day yet--I can't even read or watch a movie to take my mind off of it. There is simply zero relief. The medical community and doctors are either minimal help or have made things worse through the journey. It's been a nightmare. So much of the past two years has been being gaslit by the medical community or being outright ignored.
The day of my MRI marked 745 days since this "adventure" began--24.5 months. It marked 499 days (16.5 months) after the masses were first identified on 09/08/21 and 135 days after the ultrasound on 09/07/22 that showed increase in mass sizes (4.5 months). It's really hard not to give up. I am at wit's end. I was at wit's end two years ago. I never imagined this would be my life. I hate it. The doctors, the medical testing, the thousands of dollars, and the time from my life lost--and for what? At what point will they start listening and help me? I'm guess I'm upset because the MRI was supposed to be for my entire abdomen and to identify pain sources. I waited over four months for this MRI and that was "fast" for them, it's been 16.5 months since they identified the masses on my liver. How long will it be for this next round of tests? I'm not getting better, I am in extreme physical pain, and they are just so slow and ridiculously incompetent here. It's maddening. And I needed to vent.
I'm still unsure how much of this will actually be shared here. I do believe mental and physical health are connected. I do believe in holistic healing. But I'm still not sure this is where I want to do this. We shall see, I guess...
