Basic Update

Even though I drafted a couple posts on big subjects recently, I haven't had the mental power to polish and publish them. So I think I'll just update you on the here and now until I can get my head together. And speaking of my head...

I had a brain scan (MRI). It was loud, but easily endured for me (a blessing!). I have a really enlarged gland way down in the middle of my brain, probably because of a cyst or something benign. It may unimportant, but I'm being sent to a neurosurgeon for a second opinion. Likely, the growth of this structure will be monitored with more MRIs as it could cause major issues if it keeps growing. It is a very rare finding, and it is not genetic. I'm just special! I don't feel any emotions about this news; at this point, it's just information. We'll see what the surgeon says. 

Treatments for Lyme are going fine and hopefully helping. I infuse IVs from home in the evenings. Twice a week I inject myself with bee venom. It is as comfortable as it sounds, and even more wondrous the days afterwards as I admire the impressive welts the venom creates. (My back was used to this and hardly reacted anymore; now I inject my thighs. They'll toughen up in time.)

I'm always exhausted. My primary goal for the day is to shower, but it only happens every few days. (The positive spin on this is that I'm saving the planet, see?) 

My husband is busy and cute. He treats me like a queen even though I'm kind of gross. He doesn't realize how smart he is medically and what a good nurse he is; he takes care of my infusions and flushes my PICC line every day and isn't phased by it or by any new medical information that enters the scene. He does so much--working, driving us around, cooking, taking care of the kids when he's home, and recently, planning and planting the garden and fruit trees. I think he's a hero. 

My children seem really happy and giggle, and whistle, and make goofy noises, maybe too much for my sensitive ears. But I have a hard time hushing them because I know I'll miss their squeals someday. I go in time out when I'm overstimulated, but I'd rather be snuggling them close in our bed. I'm trying to teach them how to clean and be responsible too. Our laundry piles up, but once in awhile I'm able to put a few loads through and fold a few baskets. 

Our moms help tremendously; my mother-in-law comes to clean for a couple hours a week and brings dinner, and my mom brings Paleo food for me too and makes sure my kids have lunch every day. They both drive me to appointments and both watch our kids often. In fact, my children would rather be at Grandma's house during the day than at home. 

Sometimes I realize that being sick is a full-time engagement. I am usually my own case manager and make a lot of phone calls, to doctors' offices, homecare infusion pharmacy, the regular pharmacy, insurance, the wonderful carpool moms, and our own moms to coordinate help and babysitting. I do a lot of research on supposed therapies. Then there's keeping time for my home therapies, making sure I'm eating enough of the right stuff, checking to make sure my husband and children are eating well and taken care of. Then there are those things I never get to, like spring cleaning (it's never happened in this house), and keeping track of which clothes our children have outgrown. 

Dates and getting out with the family are rare but have to be prioritized at times. They happen when I feel good enough to to muster a few hours upright and my husband has some time (a rare aligning of conditions). Even being a passenger while the family runs errands can be a real joy (and workout), but it takes a lot of psyching up mentally and physically beforehand and throughout. 

I received a lightweight, tapered wheelchair that glides nicely. I've used it once so far for an outing. It fits my body really well and makes me pretty nimble! I'm shorter, but have lots more endurance. That is the best part, along with being able to sit during periods when I'd otherwise be standing idly and feeling like I'm going to pass out. My rib cage opens for better breathing with each stroke, and I can keep up with my husband's quick pace and long strides. I love that little chair for outings. 

When I am home and have good concentration, but no energy, I like to read and study. When I don't have much mental power, I kind of zone out. Sometimes I'll color or write. Every once in a great while, I'll get sick of seeing dust or clutter and improve the space a little bit. But lately, any extra energy I've had has been given to visiting out-of-town family that have been here (a wonderful use of my energy). 

I still have severe wanderlust and study minimalist luggage packing techniques often. I helped my sister with packing tips for a trip. She got away with only a backpack--not bad for a teenaged girl!

This past weekend, I got something fun to look forward to--a possible road trip in the summertime. I wonder how I'll feel then. I hope I can use my own packing techniques successfully and pack lighter than ever. 

Sometimes I want to look forward to vitality. But I'm just so tired of being disappointed when I try to will things to happen that are out of my control. It's like having my heart broken over and over again. So I just live for today and keep on jiving. I meditate in gratitude on how this illness affects me and try to love love love it so it feels secure and accomplished and can begin to die in peace in my body. 

That's enough of an update for now. I hope you feel love for your difficult blessings. They are eternal treasures.