Some days I love my make up, sometimes it just doesn’t go as planned (like today, the first pic). Sometimes though, the view we see looks distorted because we’re not seeing or believing the full picture. Photos, videos, and screenshots by Ariana.
It’s all a matter of perspective, what lens or experiences a person is looking through. One person’s crazy is another person’s completely understandable if you know their full story. If you believe their full story, because some people in telling their truths find there’s a skeptic on every corner. But, let’s assume that you do believe those stories here. I’m not saying mine is a gullible audience, but rather an open minded one.
Once upon a time in my own personal healthcare journey, I experienced a series of unfortunate mistakes by several doctors across differing specialties within a five year span. The worst of them was from the OB group I was seeing for my pregnancy and delivery with Hannah. I think I had three ER visits starting the day they discharged me from the hospital (fluid retention and swelling that had squeezed shut my urethra on visit 1, asthma on visit 2, and a temperature difference in my right calf on visit 3). The ER doctor I saw on visit 3 felt both of my legs and expressed some concern. My right leg had a noticeable temp difference. They didn’t have a tech available to do the necessary scans at the hour I showed up, so he ordered I be given a shot of blood thinner and told me to be back at the hospital for scanning first thing in the morning. I was told that the problem was on my arterial side and to see my primary care for recommendations on specialists.
Shortly after that visit, something emotional in me just snapped. Literally snapped. I had read portions of a study before giving birth about the efficacy of certain doses of aspirin for blood clots and decided that I felt emotionally safer in every way treating myself than in going to the specialist they referred me to. I took the recommended dose of aspirin until the temperature difference vanished, and spent the better part of the next year or two avoiding doctors unless I had no choice. A practitioner at my PCP asked what had happened for the follow up on that particular issue during one of my appearances, so I told him and he just laughed. Pretty sure his thoughts might have gone something alone the line of “she’s cr-a-a-a-a-zy!” To kinda quote Olaf.
OK, currently, I don’t recommend this. I do not. I was extremely lucky that things didn’t go very wrong without someone monitoring and supervising that situation. What I need you to bear in mind is what the bottom part of this screen shot below can mean:
This PTSD diagnosis was given based on experiences that happened long before I was a pregnant woman in kidney failure because a provider refused to check what medically could be causing 5-6 pounds a day of fluid retention, telling me I was “probably just cheating on my diet.” But the gift that carries forward is that I’m far more likely to have, as Google’s AI says, “a higher increase in symptoms” with any fresh trauma- medical or otherwise. And, if we’re having an honest moment, I still struggle to see doctors. For the last maybe 12 years or so I mostly only show up if I have no choice (as in something has gone wrong enough I feel it’s safest to do so). I wasn’t even showing up for regular physicals. My one concession to trying to work through that the past couple years was showing up more regularly for those, and I don’t skip appointments with my allergist or dentist any more. Sadly, I’d honestly still almost (but not quite) rather chop off a toe than show up to a doctor’s office.
Even without trauma, the one thing I would want medical providers to remember when they see patients is the impact medications can have on emotions that a patient is having or presenting with at the time of any given visit. During the period of time my PCP was trying Ropinirole to see if it would help some of my recent symptoms, I spent more than one afternoon crying for no good reason, and others with heightened panic responses until it was totally out of my system. This is a medication that can cause fear and nervousness. Many patients who show up for healthcare could be on those types of things, and I feel like they deserve to be seen compassionately in the full context of the symptoms their medications could be causing, heightening, or exacerbating. I was put on Ropinirole to try and manage spasms and twitches such as these, sometimes it feels like they just roll through multiple muscles in one area. On the second video, you need to watch the calf at the top of the screen, not the bottom.
For me, aside from involuntary movements, the muscle spasms and twitches were the thing that were interfering with my sleep (they are most active when I am either sitting or laying down), and it’s something that at present no medication has fully stopped (but the current combo I’m on is doing better than any of the previous ones). I was wondering why until some recent labs came back.
Now, I’m not a doctor. But…many of my symptoms that I was experiencing are on that list. I’m not really going to get into the blood sugar numbers. I’ve known my blood sugar can dip below normal after meals since a PCP in my 20’s mentioned a blood glucose level that came back below normal on a lab test I did about an hour after eating a grilled cheese sandwich and chugging down a fully sugared Coke. Nobody’s ever ordered the type of testing the most recent neurologist did to examine how my body processes sugar outside of pregnancy, but this lab finding wasn’t completely surprising to me and I already tend to eat in a manner that reflects that awareness. However, I was reducing calories over the summer to loose weight, and it’s possible that might have not helped me sleep better at night. But back to the B6, I was continuing to take my supplements (I’m a vegetarian, I’ve supplemented for years) and I wonder how much that was impacting anybody’s ability to stop the spasms and twitches. I just don’t know.
I’m sharing this before any of my upcoming doctor’s follow ups because I am confident some of my family and loved ones are taking multivitamins or other supplements with B vitamins. Apparently Vitamin B toxicity can happen even without high supplement doses if a person takes supplements containing B vitamins for a number of years, which I did (a B complex in addition to my multivitamin). And if you are too, maybe this is a heads up worth thinking about for you personally.
In the mean time, life is giving me all sorts of unplanned exposure therapy to doctor’s office visits. In the midst of all of that, we are still doing school and therapy the best we can. As I head off wishing you a wonderful week, these are some recent pics from some of what we are doing.
The first picture with the traced items is from therapy, the second from school. You can see that he struggles to stop or inhibit movements but he’s showing a lot of growth in his ability to motor plan these types of movements.
