Before April of 2018. Before my severe shingles. Before I had encephalitis. Before Postherpetic Neuralgia and chronic pain.
Marilyn tells me often that she never goes a day without praising me to someone for my patience and my ability to stay positive and upbeat. What a wonderful thing for her to say to others!
I won't pretend it's been easy staving off depression. Sometimes I wish I could simply have one day without this pain. One day where I could think clearly without straining. A day where I could walk normally again.
This week I was at the office, welcoming Jessica back to work after her medical leave. We were happy to see each other, as we're more than co-workers: we're friends. Believe me, no matter how hard things are for me, I never forget how hard it is for others. I'm rather proud that I've never lost sight of the bigger picture. I'm one person, and many, many others are suffering. It's all around us. But it still sucks to fall way behind when our group walks out for Starbucks...
This was a very busy week.
I Uber-ed all over on Tuesday! Rode with Marilyn to work, took Uber to my acupuncture session. Headed home. Gathered my shopping bags and took Uber to Freddies (our normal one - Peninsula). Back home to quickly unpack the frozen food. Then grabbed the same Uber over to the other Freddies (Interstate) for additional shopping. I made spaghetti for dinner.
I was dismayed to miss Cupping on Tuesday, as I had plans for Thursday with Adeena and wanted to have the quickest possible appointment. I'm certain I set for Tuesday Cupping (I always want it on Tuesday), so somebody dropped the ball. But regardless, I was unwilling to miss it entirely.
My Cupping and acupuncture are serious stuff to me. During the time I've been sick (ever since April 2018), I've done a tremendous amount of research. Basically Western medicine has struggled to find some treatment for PHN (postherpetic neuralgia). They've tried a lot of things - including surgery! - unsuccessfully, I'm afraid.
So I'm heavily medicated for pain (I'm still in pain, but I'm functional with these meds). I take pain meds every six hours (6:00 a.m. | noon | 6:00 p.m. | midnight), with an alarm to remind me. I don't know what I'd do without "Strawberry Fields" playing to remind me. At least it's The Beatles, right? And one of my favorite songs. Otherwise it could really get annoying over months and months... Yes, I agree it would be good to get off opiods. But at this point I can't do it. Yes, I've tried. Repeatedly. But I'm thankful to be functional. Most people have no idea I'm in pain or on meds. I can still do my work for the festival, work on computers, use my iPad and iPhone (constantly!) and carry on conversations that make sense -- well, with some issues.
I'm the first to admit that my Encephalitis gave me some minor brain damage. I'm also the first to be thankful that Marilyn realized I had it and forced the emergency room doctors to check for it. Most people don't survive it, so I'm grateful to be alive. Grateful every single day. I might struggle to find words sometimes (especially when I'm fatigued), but who doesn't? Actually, this past week one very kind Uber driver was gently filling in words for me as we chatted! I'd told him my basic issues, and he should be doing therapy, I think! A lovely guy. But I find the world is full of lovely people. (With a few exceptions.)
As I type this I discover I can't put everything into chronological in my head. But I'll share what pops in...
My friend June has been working on a directory project for her church. Her struggle was to find a new way to make a smaller booklet, rather than large pages. She asked for my help. I reminded her that I'm no wiz with Word, but I'd give it a go. If you know me at all, you know I'll always try to reason out the steps, then share how it's done. The teacher in me will train until I die, I suspect! We made remarkable headway -- I hope to try and wrap it up this weekend. [September 6 was June's birthday. Marilyn took the four of us to dinner to celebrate (June, Jim, Marilyn and me). Jim had turkey, but we three girls enjoyed chicken fried steaks. (It's sort of a group joke how often we all order that!) June turned 86!]
I went to Walmart on Wednesday to buy supplements. Things are cheaper there, thankfully. Even so, it was around $100 to get everything! Ridiculous! But I hadn't had some of them for months, so it was time to go there, finally. Too bad none of these are covered by insurance, considering the doctor prescribes them!
Adeena's plans changed on Thursday, so we didn't get together -- yet again. It's something of a joke that we always make plans, but never end up following through. I guess it's a sign of how positive I am that I always believe we will see each other. But I understand how busy she is. I'm always hopeful things will improve in her life. She's frequently in my thoughts (and prayers). Adeena is a lovely young woman.
Speaking of lovely people, I think the world of Mikki, our new housekeeper. Marilyn decided I simply wasn't up to cleaning. She was very, very kind (gentle) with me, knowing I felt bad I couldn't manage this work. Marilyn told me she needed my energy in other places. Isn't that a wonderful thing to say? So I agreed and have tried not to suddenly start cleaning (I usually manage that, if not always).
Mikki cares for our sister Sue. Sue’s dementia continues to get worse, though she still has good days. Mikki also cleans for Candy while there. This gave Marilyn the idea of hiring her for our house! This is a pretty new arrangement. We've been struggling to find a day that works for both us and her. Currently we're trying Fridays. Mikki and I had a huge task in front of us: Continuing to remove the old grout in my bathtub, then replace this with Flexshot (the much improved newer product). The great thing is all the visiting we do. We chat and share and are really getting to know each other while working. Plus Mikki updates me on things at my sister's house with both Sue and Candy. (Which is how I know about Sue’s continuing failure with her dementia.)
We called ourselves 'crazy,' and laughed very hard as we worked. (Well, she did most all of the work, but I was there to help where I could.) And talking helped the project along. We ended up with a highly improved tub that looked whiter and cleaner. More importantly, it should be well-sealed now. We need some serious hours of drying, but I look forward to the eventual test!
Mikki is a woman who has faced it all and stayed positive. I can't begin to express how she has impressed both Marilyn and me. She's so strong! She's the single mother of two daughters. Her teen still resides with her, and home is no bowl of cherries for Mikki. It's not easy taking care of people and housecleaning all day, then coming home to a house that also needs work. She'd appreciate having her daughter step up and help out. When she does do things, like doing the dishes, Mikki will end up with only partly clean dishes in the dishwasher that her daughter puts into the cupboard!
Marilyn and I also hate that Mikki can't really take a vacation. Her recent 'vacation' was driving back for her (beloved) brother's memorial. (It was so hard for her losing him, as they were very close. And she has no men in her life she can depend on.) I was happy to hear she was taking the weekend off. Imagine the need to work all the time to be able to cover your rent and pay your bills, with a car that may or may not get you where you need to go. She's a tough one!
Mikki and I can be ourselves together and share anything, and do. We laugh and laugh. Sometimes we do bash men a bit (sorry, guys, but it's true!). You boys know you earn that from time to time. And some women have had it harder than others when it comes to trusting and leaning on men.
No, not me, I admit. I always seem to have some man helping me out. Good friends! I'm surrounded by them. Again, Mikki is a lovely person. I'm glad to know her.
Thursday's Cupping hurt like a bitch (I don't mean to offend, but that's really the best way to express it). Interesting note: Sheridan had told me the bruises you get with Cupping would grow fainter over time, which has proved to be true. But this week I was really playing tricks on myself to hang in there. No, I never even considered ringing the bell. I'm still me, guys, and I grit my teeth and endure.
This is the longest blog ever! Even from me, the person who is the famed long-winded (and boring) blogger!
Can't leave out going to the Clown Corps Awards Dinner, however. Many clowns (not in character or makeup), many family members and many pizzas -- plus many awards. Marilyn was presented with a jellybean gumball machine with a plaque, as the person who began this popular program. We all got jellybeans, plus baseball caps! Nice.
If you've stumbled across my blog and are looking for more information about PHN, I am very well-read on the subject. I'm glad to 'discuss' it in greater detail, or talk more about the medications and Eastern treatments. I also have a wonderful paper that discuses it that I even carry around in case someone wants to reads it. I was delighted to discover it after months of research efforts.
I'm know I'm not the only one dealing with PHN. I'd love to help people who are out there not knowing what to do.
Marilyn and I ate dinner at 10:00 again yesterday, as she worked extremely late (again). She was so tired after an extremely busy week. She's so hard working.
We made it to the weekend! Unfortunately Marilyn is having asthma today (no idea why). She's really suffering. I'm happy to say she's asleep right now. She needs the rest, anyway.
The anniversary of Abbey Road is fast approaching. Couldn't end a blog without mentioning The Beatles! I could do an equally long blog just about them, you know. Oh, and no mention here about ukuleles! Soon, I promise.
And so ends one of my longest blogs ever. (grin) Happy weekend, dear friends.