I spent this morning at Sick Kid’s Hospital because they have one of the better genetics departments, so a lot of the morning was spent re-answering questions that I hate thinking about the answers to, trying to maintain my emotional composure, and physical exams that confirm the same problems over and over. The hip girdle muscles and upper leg muscles are continuing to decay, and while electrical tests show that the problem is starting to affect my shoulders as well, I am so far maintaining strength in the upper body. The good news also includes the fact that heart ultrasounds indicate that my heart currently seems unaffected. We’re still waiting on results of genetic tests (for Becker’s) and presumably there will be more after that, and today some bloodwork was done to check on a few long-shot (but treatable, unlike MD) possibilities.
Nice to see them wearing gloves for a change!
If you’re wondering by the way why the blood samples are being taken by syringe (they used the needle/tube/syringe to extract blood, and then transferred it to a normal collection tube) like this rather than being put into the collection tube directly like it’s normally done, this is the default for pediatric blood extraction for some reason, and since I was at a childrens hospital, that’s how they do it there. Anyway, now I’m waiting on results, and then more genetic tests as well as some brain stuff (EEGs) to look into some of the neurological side effects are next on my diagnostic schedule.
To be honest, with there not being a cure for these conditions, let alone any real treatment, I’d as soon not go through this testing at all because it just makes me feel frustrated and sad, but I need to do it for Nefarious’s sake, because the odds are strong that she’s at least a carrier of this condition (she’s probably not affected directly) and she needs to know so that she can one day plan her own family should she want to. For me though I just wish it wasn’t such a constant struggle to have the pain properly treated. I wish that the moralizing bureaucrats who are responsible for “tough on drugs” laws could see just how cruel the effects of their attempts to cut down on the illicit use of painkillers are, and how they do little to stop black market use, but in the end only punish people who are already being punished terribly by nature. It’s just very, very cruel. That’s the best way to describe it. Horribly cruel.
In much more pleasant news, purely by unexpected good luck, I got Caitlin’s birthday present today and I am so thrilled about how awesomely perfect it is, annd I’m just dying to spill the beans but it will stay a secret for a little while! Other than that, I have a relatively relaxed day because a classmate of Nefarious’s is coming over after school today (lured by the pinball machine), so I can chill out while they entertain each other. I’ve been very tired lately so I’m looking forward to that…
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Do you/they know what is wrong with you, like how to classify it?
Barring something highly unexpected, it’s a form of muscular dystrophy. Right now they’re just working out the specifics.
The reason they took blood into a syringe and then into a collection tube is because they’re used a butterfly needle on you. I imagine butterfly needles are standard in a pediatric hospital since their needles gauge is smaller than regular ones used, a must for kids obviously, to avoid bruising and such.
Ah yeah, that makes sense… I thought it might also have to do with stuffing less hardware so obviously into the arm, but it’s probably as simple as gauge alone.
I was denied pain medication when I had a tooth abscess. It was extremely painful, and I was losing it. I was up north so access to health care was limited. The lack of proper pain management care and compassion is really sickening sometimes.
It’s awful — doctors here live in fear of losing their license if they try and relieve their patients pain.
To add to your syringe versus vacutainer with kidlets: the vacutainers are a negative vacuum with x amount of pressure required to fill the tube to x volume. The little tubes are either 3 or 4mls with the larger tubes generally being 7ml. With little people, their veins are smaller and more elastic than we older folks, so they are more prone to collapsing with the higher pressure of the vacuum tubes. If the vein collapses, you risk having to poke the kidlet again, or blowing the vein completely when the needle perfs the vein. Vacutainers can be used with butterflies with a special adapter, and often are with people who are older or having poor venous access, as the normal needles can blow the veins more easily.
Hope they can figure out what’s going on. Autoimmune disorders can be totally scary and unpredictable. It sucks.
Oh yeah, the mentality that is preached to health care workers is the use of gloves is to protect the worker, versus the patient. A lot of phlebotomists/nurses/doctors feel that the gloves impact their ability to good non-valvy veins, especially in the antecubetal fossa. You will find that a lot of people who have been around the block won’t use gloves consistently. In addition, those gloves are hell to get on and off when your hands are wet, the powder leaves a gross film on your hands, the gloves are hot and uncomfortable.
Personally, I would much rather struggle with getting a good poke than potentially be exposed to Hep B/C or HIV. Just my two cents.
Yea, after years of being on there asses about it my doctors know now that I won’t let them come near me with a needle unless they have gloves on.
Beyond the obvious safety reasons they should wear gloves, the big thing that bothers me, (having dated a piercer in the past,) is that he could lose his job for not wearing gloves with one client piercing. While doctors and nurses put needles into how many people in a single day without any reprocussions? Makes me SO angry!
i know how you feel shannon althouh it sucks just as much when you know what you have, seen what it does (my sister died from the same disease i have 6 months ago and she was only 2 years older than me) and theres nothing they can do till my kidneys shut down, and if i reject one transplant ill never be able to get any kind of transplant after that
Thank you for talking about your condition and sharing your thoughts and feelings.
Thank you for talking about your condition and sharing your thoughts and feelings.²
Hope you good news of their examinations
and that their pain decreased.
Hugs
Off topic ’cause you know on the health issue I’m often sending you interesting at least ideas, this is purely a social commentary…
https://news.yahoo.com/s/ap/20100423/ap_on_re_us/us_powerball_winner_missouri
Why was it pertinent to add that this is a tattooed Father, hrm? Oh and yay for him, seriously!!!
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