The Blogging Platypus

When we moved, we made it a point to identify potential regions that could potentially have better healthcare for people, like me, who have complex medical histories and diagnoses. I’m limited on where I can go so, no, I can’t always just get a new doctor when I get gaslit by doctors due to the VA. We moved to Oregon from the Albuquerque VA AOR in the hope for this to be true. Well, just as with other areas and doctors we’ve encountered, they give GREAT lip service, however, when it comes to ACTUALLY helping, there’s lots of room for improvement. At our first appointment, they took an hour or so to do my history, draw blood, and get my referrals for MRIs and X-rays. Great! I got my MRIs and X-rays done a week or two later in Portland. Great hospital by what we saw (this is a big VA facility, but not where I see my PCP). A few days later, I can see my results online. What were my results? Well… Reversal of normal cervical lordosis Scattered degenerative endplate changes, most prominent ...

It is a little frustrating, but it isn’t necessarily the fault of others, for they are not clued in.Things are tough all around. We each have our own battles that we greet in the morning and see again in our dreams. One’s challenge may be someone else’s strength. We can bring our resources together, both physically tangible, as well as those traditions that are passed on, but only by word of mouth.  Next week I have my surgical consultation. You see, I have a growth, about an inch in size, that is currently growing on my uterus. It is an unwelcome guest, and one that must be evicted. It looks like I will be having a hysteroscopy or hysterectomy, with the latter one hopefully leaving my ovaries for better hormone regulation. Both of these require quite a bit of rest, which is one thing I have struggled with for much of my life. It’s not that I feel like I keep busy to avoid sitting with my feelings. Trust me on that one. But rather, it comes from a place of guilt. Our society has br...

TW/CW: Sexual assault, drug abuse, suicide Hmmm, where to start? There’s a song that says that the beginning is a very good place to start, so that’s what I’ll do. I was born and grew up. The end. Lol. I am still growing. I came into this world in this current form during the Summer of 1977 in the San Francisco Bay Area. So, that makes me...carry the 8...42! I thought that my early 40s would be different, but, alas, the Universe had other plans. Image via Pexels By the time I was 16, I had graduated from high school, was enrolled in community college (which would be the first of three degrees I would go on to earn), held a job as the Assistant Printer for the school district, had been through drug and alcohol rehab, and experienced my first sexual assault. What can I say, I like to get in as many experiences as possible. I obtained my AA Degree and my Emergency Medical Technician certification by the time I was 18. I wasn’t sure what I wanted to do for a living at that ...

Some days are easier than others and, boy, today was a doozy. The day before was too. Sometimes it just feels as if the rough days keep piling up, back to back. Monday was full of annoyances, some little, others more significant. One of the more challenging aspects was that I found out just how much my doctors and VA clinic here in town think I matter to the world. See, they sat on repeated requests from the cardiologist for more information and notes to why I needed an echocardiogram. Since the requests were ignored, the referral for services that were started by my geneticist were rescinded, but the insurance company failed to inform the cardiologist or myself that the appointment was not going to be covered. That also means that the echocardiogram that I was to have this week will not be happening. I was also lied to and gaslighted by the VA nurse who called me to let me know that both sides of my body didn’t need to be tested during the nerve conduction test I had done earl...

My experience in pursuing my disability approval has been one that has made me sink to one of the lowest moments in my life. After getting my first denial for disability, it gutted me. But, this second time, it crushed me, while at the same time, made me want to fight for all of the other people who have experienced the same or similar treatment by the powers that be. When the government says you aren’t disabled, but you have all of the doctor's notes, lab results, and hell, even a genetic test that revealed a mutation in my collagen that is associated with Ehlers Danlos Syndrome, it becomes such a mindfuck. It is as if the government says you don’t have a right to be alive, since, in their view, I am just a lazy sack of crap who just chooses not to work. When, in reality, my body is slowly falling apart, my shoulders and hips pop out of place if I move sometimes, my core temperature drops often, with my hands being 60-70 degrees (about 20 degrees cooler than they should b...

Cannabis has been a part of my life for the last couple of years. I started out with my medical card when we lived in New Mexico. I still remember the first strain I bought. Let me tell you, after not having used cannabis in a decade or two, starting out with Gorilla Glue may have not been the best idea, but it gave me a good couch lock. For those outside the chronic illness community, couch lock may sound like a boring vegetative state, without the artificial life support. However, for me, and I would guess many others, the couch lock effect is exactly what I need at times. In some of the research I have been doing to figure out what exactly is going on with my body, I stumbled across something that made total sense. In addition to Ehlers Danlos Syndrome and hypermobility, there’s something called autonomic dysfunction, or dysautonomia. The autonomic nervous system regulates so many of our automatic responses that keep us alive. From breathing and blood pressure, to digestion a...