How My Body Has Held Up To Moving

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!

5 thoughts on “How My Body Has Held Up To Moving

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  1. Congratulations! And I hope you can slow down now. My organization tip is to keep some old, big towels under the kitchen sink. For big spills where paper towels and kitchen towels aren’t enough. Also, if your kitchen has a door to the back yard (like mine does), then you have towels handy when your step-daughter comes in all muddy and/or wet from playing in the hose or rain! It won’t track (so much) all through the house! And they love coming in to a towel, instead of running freezing through the house! 🙂


  2. I decided i will do opposite of scolding you and commend you on your willingness and stubbornness to push yourself. Doing so flares us, but living and doing as you’re not ill gives the satisfaction of feeling a bit like a normal human. Proud of your accomplishments! Congrats on your new home and wishing you lots of rest!


  3. Congrats on the new house! My only advice is to take it one day at a time. We have been in our house for almost two years, and we still have a few boxes, we still have a long list of projects that need to be done, and we still have some rooms that are not fully furnished.. Like everything else in life, it takes time. Making a realistic plan of what we want to do in certain rooms of the house (and adjusting the plan as necessary) has been helpful.


  4. I am almost tempted to accept your invite and scold you and makes your loved ones happy!!!! Jokes apart you are doing really well, coping up with your ailments, trying to lead as normal a life as possible. Staying closer to your family and loved ones is the best decision you have made.


  5. I’m recently diagnosed with EDS, POTS and MCAS after feeling increasingly ill over the last 15 years. I discovered your blog through googling and have found it very helpful so far. I’m also an organized, type-A personality with training and temperament for evidence-based medicine. I’ve found myself overwhelming doctors and/or not knowing the best way to present my case with each new physician. You mention your organization methods in several posts. I’m wondering if you could share templates, general guidelines, tips, etc. I’ve considered using services like Picnic, etc. To organize my records but am generally uncertain where to direct my limited energy. Any advice is appreciated! Would also love any Chicago-area treatment recommendations. Best of luck to you and thank you for sharing your experience!


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