Hey everyone! I just wanted to let you know the lack of updates is not because something went wrong health wise. In fact, something wonderful happened – we bought our first home last month. 🏡🎉
We now live within a few minutes of my stepdaughter, several family members, and old friends.
Between working on getting the house into shape, my normal health issues/infusions/appointments, and enduring the trials and tribulations of using a walk-in bathtub (came with house), it has been quite the adventure.
The entire house needed primed and painted due to being smoky. I haven't done even half as much as a typical new homeowner would do thanks to my ridiculously supportive parents, siblings, aunts, uncles, and friends who act like I have nothing to thank them for. I hope they are difficult when they get old so I can feel like I came anywhere close to returning the favor.
Although my body has held up better than it would have this time last year and I even recently attended a concert (!!!!!), I have had symptoms I haven't had since starting IVIG such as fevers, and an uptick in the frequency of tender lymph nodes and presyncope. It has been difficult to do what I feel needs done and also eat enough (eating increases my symptoms). I have been taking the max (doctor approved) dose of my stimulant (Adderall) and still feel very fatigued. My EDS back pain where my vertebrae turn and get stuck has been annoying me, but one session of manual physical therapy whips that into shape.
Diamox continues to help with post IVIG headaches, however I typically need 90% bedrest for 3-4 days following each infusion.
I am taking the advice (pleas) of others and slowing down my pace after hosting my stepdaughter's birthday celebration this weekend.
If you have any handy home organization tips or tricks, I am all ears. If you'd like to scold me in the comments for not resting enough and driving my body into the ground, my family/friends (especially my husband) are all ears. 😛
Thanks for sticking with me!