I've written before about my experience with a chronic illness. It's been an interesting few years since the diagnosis landed with a thud in the middle of a hospital room. I have an autoimmune disorder. I've always had it. Honestly, when I finally found out what was going on with me, I was relieved. There was an answer to a question I'd had my entire life.
An answer, however, was only the beginning. The beginning to blood tests, treatment options, and a whole lot of internet research. The treatment that began was a monthly visit to a hematologist's office. Once there, an IV would be started and immunoglobulin would be administered. That process continued on for about a year and a half until we moved to another duty station (don't forget...we're an army family!).
Upon arrival to our new home in North Carolina, I decided not to start up my treatment regiment. Honestly, and however vain this makes me sound so be it, I was struggling with the fact that the treatment had caused weight gain. I had a very difficult time coming to terms with that side effect that I opted to forgo treatment for nine months. The first few months were fine. The following six were terrible. I was sick...A LOT. Sickness for me is upper respiratory and sinus infections. I mean, seriously painful and intense infections. So I gave in, made an appointment with an immunologist on post.
And found the most incredible doctor I've ever met. I haven't detailed my struggle with doctors in the past because it wouldn't change anything. The fact that I suffered with an undiagnosed autoimmune disorder for the first 27 years of my life should be an indication of the struggle. Once at Bragg, though, I finally realized what can happen when someone takes a minute to listen ...really listen...and it was life changing.
My monthly treatment began again. Same process as before but a wonderfully different environment. No longer a day of dread and discomfort. My infusion nurse is the second best nurse I've ever met (second only to my favorite nurse--my mama!) and so often went above and beyond for me. So after a recent meeting with my immunologist, it was difficult to make the decision to switch treatment methods. Choosing the option that was a best fit by my family was my biggest priority, however.
With this option, I visit the incredible infusion clinic, and the best nurse in North Carolina, once each month. I arrive, get prepped with an IV, and start the infusion. Including travel time, dropping the kids off at my friend's house, getting in the clinic, and so forth the time to get it all done was about 5 hours. The plus side? Once I'm at the clinic, it's a breeze for me. I'm in a comfy chair, I have a few hours to read, or really play games on my phone. I've only got the use of one arm during that time, so I have an excuse not to blog. :)
The downside to monthly infusions is that I struggle with disorder side effects more often throughout the month. My post infusion side effects are also worth mentioning. It's flu-like symptoms for 12-24 hours post-infusion. Additionally, it's difficult to maintain adequate childcare. My awesome pal Dawn will watch them for me anytime I ask, but she homeschools, too and I feel guilty about burdening her with 3 additional kids for the day, once each month.
This option means that meds are delivered to my home each week. And I administer them myself. It's not done via IV but rather with small needles poked into fatty areas and delivered subcutaneously. The pros? Incredibly convenient. I can do everything at home. My disorder side effects are reduced as my IgG count remains on a more even keel. The cons? I have to stick myself with needles (yep, more than one!) every week.
I've elected to give weekly infusions a try to see how it works out. I'll keep you posted.