Some people use cyber Monday sales to buy Christmas presents. I took advantage of the cyber Monday sale at @medicalertfoundation to get two Medic Alert bracelets, as even just the highlights wouldn’t fit on one. My #mastcellactivationsyndrome has been bad, and I’ve been having multiple #anaphylaxis episodes a week. It turns out I have become highly sensitive to most scents and perfumes. It’s why you’ll see me wearing a #vogmask all the time. If you can remember not to wear scents around me, I’d really appreciate it! I’ve already been through 15 #epipen so far, and have too many holes in my legs… 😜 Love you all! 💜💜💜
I really wanted to have turkey this year, so I figured out a way. Happy Thanksgiving everyone! I’m so grateful to have all of you in my life! 💜
Some people go to the gym to pump iron. I just connect it to my port! Getting an iron infusion to help with my anemia. My TPN doesn’t have iron in it, so I have to pump iron occasionally. I don’t even break a sweat! 😉
One year ago today, I started TPN (IV nutrition). At the time, I had only been getting about 600 calories a day, between the little I could still eat and the formula I was getting constantly through my J tube. Within two weeks of starting, I couldn’t even get the 600 calories and became fully TPN dependent. It hasn’t always been easy, but it’s kept me alive for a year now. In that year, I have only been able to eat three eggs (for a medical test), two small pieces of potato chips, and a piece of tofu, none of which went well. I eat a ton of skittles and jelly beans, but only because they easily drain out of my stomach through my G tube. At least I’m alive and still causing trouble. In other news my SSDI hearing was delayed until January, so I have to wait even longer to get my neck (and speech) fixed. It’s only been three years since I applied.
I have a ten day trip to the east coast to visit my family. These are just my medical supplies for the trip, including TPN, my c-pap, catheters, and TPN/hydration supplies. One year ago, I had to cancel this trip to get feeding tubes urgently, because starvation and dehydration were becoming a problem. Now, I’m alive and nourished thanks to TPN (IV nutrition). I am grateful for this treatment, grateful that Medicaid hasn’t been cut and pays for this, and grateful to be alive! NJ here we come! August is also gastroparesis awareness month, and we’re starving for a cure!
So the medical malarkey is finally over. They sent me home on Saturday after making sure at least part of my tube was still in my intestines. Interventional radiology didn’t want to come in over the holiday weekend, so I had to go back yesterday to get my tube fixed. They did the change with no pain meds, and the whole area was already inflamed. I said ouch a few times. At least I got a shiny, new J tube out of the deal? Now if only we can figure out how to get it working…
Thanks for all your love and support!!! 💜💜💜💜
This is the IV nutrition and medication I need to stay alive every day. (Apparently, I’m a messy eater… 😜) I have severe gastroparesis and intestinal failure from Ehlers Danlos Syndrome, and I am unable to eat or tolerate formula through my feeding tube. I am completely dependent on TPN (IV nutrition) to stay alive, and would have died last year without it. Medicaid pays for this life-sustaining treatment, which allows me to keep doing disability rights work and writing. Don’t let the AHCA pass! 24 million will lose coverage and people like me will die.
I realized I posted about something medical without explaining it, and assumed everyone knew what I was talking about (like a typical doctor 😜)
I had an IV port put in last Friday. It is a device that sits just under the skin, and has two access ports. By sticking a special needle through the skin and into an access port, i can get IV access to one of the major veins near my heart, so I can get the IV nutrition I need daily. There are two access sites so that I can ru two different IVs at the same time, or give myself medications while running nutrition. Here’s a picture of what it looks like access with two needles in.
the port will allow me to remove the needles and go swimming if I want, or do other activities without having a line hanging out. Hopefully this will last me a long time
Here’s a picture of me with the port accessed.
This is what the port itself looks like.
Port is in!
It’s been a tough couple of months. I’ve not been able to be on Facebook due to fatigue, but I thought I would try to poke my head up. At the moment I am getting all my nutrition from the TPN (IV nutrition) as I am unable to eat anything or tolerate anything through my feeding tubes.
This week is feeding tube awareness week, so I thought I’d post a picture of my tubes. I have severe gastroparesis and intestinal dysmotility, and am unable to eat. As a result, I am kept alive by my tubes. People like me rely on feeding tubes to be kept alive and to lead a full and productive life. Check out the website to learn more,