ANNNND, still no answers. Waiting for my MRI results and all my neuro tests to be sent to my Dr. at Barnes. Can I volunteer to go photocopy it myself and drive it down because it’s 513 8 weeks later (Shit, I cannot keep track of time. )*circle back* and I am positive I could get it mailed or hand delivered faster.
My family still gets to hear me repeat myself but I’m working hard at taking better care of myself. I’m making the hubby walk with me and got him a FitBit so we can challenge the kids. My only concession to junk food is tortilla chips and guac. I mean, c’mon, it’s guac. The good fats, right? I have lost 5 pounds in a couple of weeks. I just have to be careful of when I am outside because too much sun= flare.
The garden is looking killer. I’ve been teaching little miss to pick radishes. I tell her the big ones are yelling “pick me” at her. She even takes them and washes them for me. Not a fan of the taste though. These are French Breakfast radishes which are so beautiful.
This is kinda all over the place, but hey, so am I.
Tomorrow is brain cage day, also known as brain MRI day. I’m not even claustrophobic and it makes me antsy. The good thing is that my visit at Barnes turned out really well. No obvious issue like dementia. The neurologist seems to think that perhaps my sleep is my problem. We’re doing an MRI to compare to my baseline from 2015 and see if there are any differences and if not, I’ll be seeing a sleep neurologist. I already have a CPAP so it’s pretty unlikely that is the problem. I’m a real tosser and turner plus wake up a lot so I can see that being an issue. I’ll tell you, just getting through that appointment was a major stress reducer for me. I was so nervous. I mean, it’s my brain! No one wants a crapped out brain. I’m hoping we can get me back to normal so I’m not forgetting everything all the time. I’ve got quite a while before that becomes my daily life.
I have begun doing squats at my desk and am out in the garden. My heart rate has dropped significantly in the past few weeks. Exercise plus lower stress levels all the way around are certainly helpful. Here’s hoping for more good news tomorrow.
Having memory issues is a scary thing. I forget appointments and events; I forget to go to the grocery store, pay bills, etc. I bought my first daily planner ever, a Day Designer. I used to use weekly planners because it was the most efficient for me. Now I have to write down everything so daily is the way to go. I like the simplicity of it. It has the sections I need but isn’t fussy so I’m not distracted,
My birthday was Saturday. My husband bought me what I have been dying to have, an Amazon Echo, and I love it. I already have it set up to turn off some lights. I set timers for cooking and reminders to turn off the stove. I add items to the grocery list while I’m in the kitchen looking in the pantry. I tell it where my keys are when I get home and it remembers for me. God, what a handy fucking tool for me,
I also have an Apple watch. My Dr. suggested it for reminders about medication and appointments. It has helped tremendously. It just gives me reminders until I complete the task. It also has a breathing app so I can remember to slow down and focus.
I use Grammarly and Lingofy for spelling and grammar while I write to maintain my previous level of ability. They don’t catch every mistake but proofreading helps too, as I recognize the error even if it takes a bit to figure it out. I also use the Lingofy AP guidebook for professional questions while I work, rather than second guess it.
My vocabulary and IQ are still high, my memory processing speed is the biggest hit right now which means it takes me longer to do the same tasks. Sometimes following a sewing pattern pisses me off-putting sleeves on incorrectly or the like. Of course, I did those things before and laughed them off. I’m so much harder on myself now. Long, productive days are exhausting. I come home wiped out just from concentrating so hard.
There’s hope, I haven’t been diagnosed yet, so perhaps I have a reversible or manageable problem. Then again, maybe I have dementia. At 48 fucking years old. No matter what, I want an answer to my problems, whether the outcome is desirable or not. I’ll tell you this, I never had a honeymoon or even a vacation with my husband and if the clock is ticking on my brain, that will be priority one. I want to make as many great memories for me and my family while I can.
The book, Still Alice, had been on my reading list for a while. I still haven’t gotten to it because I have 32 books loaded on my Kindle to read right now. This weekend I saw that the movie was on Starz though, so I decided to watch it. It terrified me. As a person who is currently struggling with memory issues and “significant memory slowdown” I am afraid of what this will mean for my family and me. Mostly my family. If my memory problems progress to a significant loss of lifestyle the ones who suffer will be my immediate family, not me. Hell, I won’t always realize what is going on.
The hardest part is right now, while I do know what is happening. It sucks to feel stupid and unable to process things quickly. Some days are great, and I can tear through work. Other days it is like I am underwater and tied down or I ask the same thing over and over. I’ve been referred to the Memory Diagnostic Center at Barnes in St. Louis so I am confident that they can help me. I was told I will be one of the youngest patients. Sigh. I don’t feel that is a compliment. Maybe it is related to one of my autoimmune diseases and can be resolved or slowed. Fingers crossed.
I’ve watched my vocabulary shrink, I’ve missed many weddings, appointments, due dates and more because I can’t remember things. Even with reminders I sometimes forget. I left my Apple watch at home this morning which is a huge assistance to me in daily life. It reminds me to take my meds, to pick up my grandchild from daycare, what’s on my shopping list, etc. I’m lucky because I just have bad days but I am still 100% independent and not facing physical harm because of the ongoing problems. I’m not going to wander out into the street in the middle of the night or leave the stove on. The question lurking in the back of my head is, “will it come to that one day?”
Sometimes it’s hard to grow older and still feel sexy. You don’t have a completely flat stomach anymore, especially after a hysterectomy. You might have to keep your hair short because it falls out and you can’t always keep your hands up to brush it out if it is long and curly, your hands aren’t working or whatever that day. Maybe it isn’t growing older, maybe it’s the chronic pain that makes me feel less sexy. I still have a lot of laughing and love left so I’m sure the feeling will return. It’s just been a rough week. A nice hot bath and bottle of wine tonight should fix me up. Time for some self-care. The holidays are devoted to others and I forget about me.
Oh, Ferris, you were a wise young man. Since March I have lost my job, started another job, gotten a breast reduction, had my son get married, had my husband lose his job and start another job, had a friend attempt suicide and come out of the closet. Damn. Ain’t that some shit? At the end of the day, we are all still here and standing strong.
In addition, two of my former coworkers and sister-wives, have moved. Either they or their spouse has found employment elsewhere than this state with a huge mess on its hands. It’s heartbreaking to lose people I love for issues out of our control.
All I know is that at the end of the day, I am more grateful than ever for time I have. Life really does move fast-if you blink you might miss it.
I’ve been listening to Marie Kondo’s book, The Life-Changing Magic of Tidying Up. It has got me going through my closets doing some organizing. I’ve done only my clothes and have at least two trash bags. I imagine before all is said and done I will be amazed at everything I get rid of. While undergoing this project I decided to work on creating a more cohesive closet. It seems that I have a bunch of things that don’t go with much or are so worn they need to be tossed. I’ve been whittling down to fewer colors so I create a basic capsule wardrobe and build from there. The bonus is that the fabric I already have to sew all falls in this palette so it will be much easier.
I ordered some new leather last night to make my husband a planner cover for his Field Notes and some to make myself a new bag and some notebook covers for the store. Look at that beautiful orchid color. Ugh, so in love with it. Yes, it will go with my pared down wardrobe too. I was thinking ahead.
Have any of you Konmari’d your life or created a capsule wardrobe?
When you get a whiff of layoffs happening, it is always smart to formulate a plan B. I used to have a different plan B, sewing and alterations. That however was not so easy to do. I ended up with zero time for myself and undervaluing my work and time. I am not ending up with a layoff as I have seniority and get to keep my position. My husband is not so lucky. Enter Plan B. My new plan is based on my love of planners. I have used many planners over the years and see the beauty in the different systems.My favorite it the Midori Traveler Notebook style. I like adding notebooks as needed and taking apart notebooks when I don’t need them. I made my own cover in the fall from some gorgeous leather from The Leather Guy in Minnesota. I bought a lovely chestnut Chromexcel for myself and very thick black leather to make a cover for my son.
I didn’t get a picture of his, but it is Field Note sized and has multiple notebooks in it. Field Notes is a great size for him, he is in the Army, as it fits in his uniform so he can take notes whenever needed. My husband steals my Field Notes books so he can keep all his lists. Lists of musical recordings by artists, different equipment used in World War II, comic books he has or has sold and so on.
My planner is the standard Midori size but with a Field Notes insert for bill tracking. It makes it much easier to sort through the mail that way. I just open a bill, put the new balance in and schedule a payment online.Helps keep me from being a paper hoarder. Me and stacks of paper-ugh. Keeping everything in a planner is so much easier. I spent this weekend ordering all my garden seeds and have two pages of seeds in my planner to keep me from doubling up when I go to the store for things and am tempted by spring gardening supplies. Seriously, what would I do without all this organization?
Hopefully by the end of March I will have all my new inventory in and I can open plan B-my online store with planner accessories. Then everyone can have the gift of organization. I will have notebooks, washi tape, bookmarks, hopefully some handmade leather covers, stickers and other assorted planning goodies.
I am being laid off today from a job I have had over 8 years at an institution where I have gotten 2 degrees. Not because of poor work performance but because our state government has not passed a state budget in over 222 days. 198 people will lose their jobs today. We lost 62 in the fall. People have left to work other places because of our situation. We have not received $40,000,000 in state appropriations. We have paid students MAP grants so that they may still attend college, in hopes that the state would pass a budget and we could continue on. I am not a faceless statistic. I am #forevereiu. Dear State of Illinois, please #fundeiu.
My husband always goes on and on about fountain pens so for Christmas I bough him a fountain pen and ink. After messing with it myself-what it’s a pen-I had to get one myself. I bought a Lamy Safari so I wouldn’t be dropping a bazillion dollars on it in case I misplaced it.
I love it. It writes so smoothly. I want to try different nibs and inks to see how it works. So now we can add fountain pen and planner obsession to my list. That’s a dangerous combination.
I’ve also added some roller stamps to my arsenal of planner tools because when you journal and plan out a week, you need some fun to it.