August 9, 2016

There is something empowering when you decide to change the course of your life versus someone else doing it for you. Today I took myself off as admin of the support group I created 2 years ago. I handed the reins over along with the website, the logo, the social media accounts, all of it. No one forced me. No one kicked me out like before with SJ. This was my choice to end that chapter of my life. I’m excited. Don’t get me wrong. Helping the group members navigate their journey with this disease has been great. I have met so many amazing lifelong friends. It’s just nice to have this be my choice. Especially when I have no control over one part of my life; my health. And with that segway…


On Thursday I started my loading dose of Orencia. A loading dose is when they give you more than the maintenance dose of a medication to get it in your system. I have to drive 2 hours to Boston (that’s where my rheumy is) to get these infusions until my insurance lets me transfer them to be more local. My loading dose is an infusion at week 0, week 2, and week 4. Then infusions will be every 4 weeks.


My veins are shot. This is actually the second time trying Orencia. My Rheumy was thinking that maybe it didn’t work before because of my undiagnosed severe sleep apnea at the time. A blog post for another day! With all the infusions and blood tests over the last 10 years it’s hard to get access to a good vein. The nurses have to get through a layer of scar tissue to get to a viable vein. Did I mention these veins are only on my hands? Yeah…OUCH. The veins in my arms are child size and collapse with any needle pressure.


I had this problem before so I actually had a port installed in my chest. 4 times! Yeah because I never do anything easy right! Once the port got infected. They used glue for the closure and my larger than normal chest pulled the wound down and it opened. When the port is installed they stitch it to your muscle with 1 or 2 stitches. Then scar tissue is supposed to grow around it to anchor the port. That scar tissue never grew so when the nurse would hit the port with the needle the port would flip. Inside me. Right under my skin. Yup it’s as gross as it sounds. Once I stopped Orencia and started on Enbrel shots they removed the last port. I’m optimistic about this new port. It’s half the size so maybe it won’t be as noticeable. It’s pictured here in purple.*


Here is where the port is placed inside the body.**

 ​And the needle in the picture above is not accurate. This is the needle they use.*** Fun looking isn't it?

 So there you have it. A little lesson on ports. I wish this wasn't information that I knew but I do. So I'm sharing it with you.

* picture from https://pinkunderbelly.com

** picture from http://www.onlinenewsreportage.com

*** picture from  http://jmmultiplemyeloma.blogspot.com



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