I’ve had a lot of different health issues lately.
To begin with, I saw my chiropractor a few days ago. It was an assessment appointment to see how far I’ve come in my healing. I broke one of the vertebrae in my spine when I fell one night a few weeks ago. You can read about that in THIS post.
While he’s happy with the progress I’ve been able to do, he asked me to take another two weeks off work, subject to revaluation. I’m still experience a lot of pain; it’s difficult for me to make it a full night in bed and the pain will flare up if I try to do too much (which I always seem to do).
Resting is hard for me, as I equate my creative output and my productivity as my worth and my value as a person. I’m trying to break this habit, but it’s hard. I am for sure going to be talking to my therapist about this. I know that this stems from my father and the lessons that he taught me. Go figure that the unhealthy ones would stick.
However, in the past almost five weeks, I’ve learned some things. I have learned about the value of daily naps, almost daily baths, the joy of sitting with a good book or a fun game on my Nintendo Switch. I’ve incorporated these practices into my daily routine to try and find some balance and some clarity while I try to ignore the internal critic.
The internal critic tells me that I’m being lazy, that other will think less of me if I don’t push through, that I should be doing all the things (!!!). Thankfully, I’m getting a little better and telling him to go away, it’s hard though. I need to allow myself the care and the time that I would give to anyone else. It’s always more difficult when it comes to me though. I know that I’m not the only one wired this way.
Added to the issue with my back, got an email for testing last week. It was at the same place I went to have X-Rays for my back, so I figured that it was a follow up X-Ray for my chiropractor and that maybe he just forgot to say something about booking the appointment. When I was called in to the exam room, I was surprised to be taken in for an ultrasound.
According to the technician (who had the bedside manner of Sweeny Todd), my family doctor ordered the test as she wanted to look at my bladder, prostate and kidneys. The technician berated me for eating anything as I was supposed to have fasted.
The thing is my family doctor didn’t say anything to me about wanting to look at my bladder, kidneys and prostate. The last time I saw her was a few months ago to deal with my high blood pressure and about needing antidepressants. I have no idea why she ordered the ultrasound or what she could be looking for. I’ve put the worry in the back of my head for now and there’s been no follow-up from my doctor at all. Hopefully she would have the test results by now and will (hopefully) call for an appointment.
Because things come in threes, I’ve also been waiting for the results of bloodwork that I had done on Friday. I am waiting for my red blood cell count to get from 0.07 to 0.08 so that I can start my next round of Mavenclad chemo medication. Knowing that the hospital would have gotten the results by now, I sent them an email asking if I had the green light for Mavenclad. my red blood count is still at 0.07 unfortunately. I’ve scheduled another bloodwork appointment for just before New Years. Hopefully my red blood count will be up to 0.08 by then.
I had my bloodwork done last week and had to email the MS clinic to find out if my Mavenclad was going to start soon or if I had to schedule another appointment for more bloodwork to be done. I know that hospitals are overrun and overworked, but to my way of thinking, I should not have had to email them myself. Once again, I have to be my own health advocate. The MS clinic once renewed my faith in medical science. Now it’s one of the examples of our overworked health system. I heard back from the infusion clinic this morning (not my MS clinic nurse or neurologist) and my red blood count is still at 0.07 unfortunately. I’ve scheduled another bloodwork appointment for just before New Years. Hopefully my red blood count will be up to 0.08 by then.
I should have received a call from my nurse at the MS clinic and I should have had an MRI done between rounds one and two of the Mavenclad, but that didn’t happen. I saw my neurologist month’s ago with no update on what’s going on. I even heard from the company handling the Mavenclad and they gave me a list of questions to send to my MS nurse when I got the first round bloodwork done…with no response at the time except to tell me that the MS clinic was closed for two weeks and there’s been no contact since.
I’m annoyed and feel really let down. Is this the state of our medical system?
I should have had an appointment or a phone call with my family doctor before she ordered tests to be done. I should have received an MRI appointment to prove that the first round of Mavenclad actually worked or made a difference. I should have been told about everything the Mavenclad would do to my body; to me, knowledge is power and forewarned is forearmed. I actually want to know all the ins and outs, no matter how boring. It is my body after all. I really wish that I would have been told everything. It would not have changed my path, I would still have taken Mavenclad, but I would know more about what to expect.
I know that doctors are under an incredible amount of strain right now. I get that. Covid made the holes in our medical system very evident, and I know that a lot of stuff is bound to fall through the cracks. However, with both my family doctor and my neurologist, I was not given information I should have been told. All I can do going forward is to be my own health advocate and remember to ask more questions and not take what I’m being told at face value. I’ve sent an email to my MS nurse and requested an appointment with my family doctor. We’ll see what information I’m given or not given.
I need to remember that this is my journey and I decide what direction I go in.