Discovery & Things Ahead: It's okay that this is what I am doing & it's all I need to be doing.
- May 6, 2021
- 5 min read
"You are enough and what you are doing is important, give yourself permission to do just that." -AE
Saturday, May 1: Craft Show Fundraiser--> Saturday was definitely a successful fundraiser with so much support from the community. There were many many wonderful vendors with beautiful crafts and such kindness. I had a good time meeting everyone, thank you to all those who participated. Unfortunately, I didn't cross my mind that I would be hypersensitive to the sun while on the antibiotics, but I got very burnt which resulted in getting sick the rest of the night and following morning.
Sunday, May 2: Driving to DC--> Sunday my parents and I drove up to Washington, D.C. for my second treatment appointment. The drive was long and grueling. The trip made me feel really sick and messed with my head mixed with feeling poorly from the sunburn. It was late once we arrived at the hotel, but still needed to do an LR bag. A friend of mine currently treating gave me a pro-tip oh ways to travel with IV needs, like hanging a bag without a pole. We used a hanger and a suitcase cart. It worked really well. When I needed to move around or go to the bathroom, it as easy to hang in the shower. I even brushed my teeth.
Monday, May 3: Appointment 2 w/IV Treatment--> The appointment was in the afternoon and went well. For this appointment I didn't have to test a new IV medication because I did so the first appointment. They took me to a room with a large comfy leather chair. The nurses checked my vitals and got me set up to meet with the Specialist. Mom and
I asked a lot of questions, went over symptoms and reactions to the first month of treatment. The Specialist had many things to say, added some diagnosis within my reactions, and new medicine regimes. One of the things I have been dealing with is called Mal De Debarquement which is a rare disorder of the vestibular system. He has me taking a new medication to help with the issue. He discussed the new protocol for this month and told me very honestly, "This month is going to be tough." When I saw the paper with meds and instructions, I was so very surprised. It is going to be a rough month for sure, but I fully trust my doctor and know he's knows what he is doing. I am going to give it my best shot, but this next stretch looks like a lot. Get ready to be praying!
Tuesday, May 4: Driving Back to NC--> I woke up early in the morning and just didn't
really feel well. While we drove home I was really drowsy and even slept like three hours of
the trip. (Not my normal at all.)
When we got home Tuesday night, I unpacked and was in a frenzy with all the things I needed to do. Suddenly, I stopped and told myself I am doing exactly what I need to do right now... that I may need to do somethings but I don't have to do everything. In fact, what I will be doing over the next 8 months is THE thing I need to be doing AND that's enough. My body is fighting so hard to beat this awful disease. Its hard to give myself permission or acknowledge that this is a big deal, a full plate, a full-time job...AND that's enough. (It was kinda a big moment for me.)
Wednesday, May 5 : First Day Back in NC: Mom hooked me up with my LR bag for the
first time in over a week. Her hand is definitely better, but still healing. After my bag was
done, I got moving trying to get things accomplished that actually had to be done for treatment. I have been trying to get new meds ordered, decipher this months protocol, make a schedule for the coming weeks, and get organized. By nightfall, I was pretty exhausted and herxing.
Thursday, May 6: Full Day--> Today was definitely a full day. I was able to sleep in a bit, which was really great. Dad got me hooked up with my LR bag, I had a great counseling session, worked really hard on the protocol , organizing, and setting myself up for next week. After all this, I had high hopes that with the cooler beautiful weather I would get to go outside, maybe even pot one of my plants. Unfortunately, by the time i got my clothes on to go outside my pain level was much higher and the herxing had gotten worse. I started putting heating pads on with anticipation to lie down, but ended up doing an Epsom soak. It's really tough when I haven't had that sick of a day but my pain takes away my ability to function. I got frustrated with the pain stopping me from simple things, sad because sometimes its a lot and I get really lonely, and then frustrated again that the pain and the suffering makes me isolated. Before it got dark, I took thirty minutes to do "nothing" but still something outside with my plants. I started planning which plant would go with which pot. Even with residual pain and MCAS trigger, it was nice to take a moment outside.
---> JOY POCKET for the day: A close friend of mine wanted to figure out a few plants and so we had a fun conversation back and forth and we figured it out on our own first and then had a confirmation with the innerweb afterward. It was so much fun. I really enjoyed figuring out the puzzle. And my friend's husband had some hilarious commentary throughout the process.
The rest of the week/weekend I will continue to work on my protocol and schedule/medication regime. I hope to do a few restful and restorative things as well.
I am really proud of myself for acknowledging that treatment is the very thing I am doing and it is a plenty. As great proof that I have taken that to heart, best I can, when I made my list of "things to do" rather than writing "Wednesday's Things to Do" (as I normally would have), I wrote "Wednesday-Sunday Things to Do."
Anyway, there's a lot of growth going on in the midst of what feels like a monsoon or mudslide. What God is doing is tough, but a beautiful sharpening.
Please be praying as I prep myself, getting ready for this tough upcoming month. Also, keep me in mind as the bacteria continues to be killed resulting in herxing with pain and sickness.
Thank you for all the support, for those who read this and love on me.
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