Goodbye, August. You Can Show Yourself Out

 

Goodbye, August. Be on your way and don't give September any ideas, unless it's for the beautiful blue skies, voluptuous clouds, and refreshing temperatures you've left as parting gifts. Other than that, take your leave and all your lousy vibes with you.

I've been struggling with a mystery condition for a while now. After any exertion my muscles suddenly become very weak. I start losing my balance; my feet will scuff the ground when I walk, causing me to trip, then fall. Sometimes, I can sense it happening; other times, I have no warning at all. My arms have no strength, and my hands shake at times with tremors. I cannot carry anything of much heft, and there are times I can't steadily put a drink to my lips. As you can no doubt guess, this has put an end to my daily walks; I haven't been able to take one for a month. 

I miss them more than you could ever imagine. And I am so very tired so much of the time.

This is eerily reminiscent of my Vitamin D deficiency in 2017, except that I've been supplementing D religiously since then. Obviously, these symptoms prompted a visit to my primary care physician, who ordered some labs and a visit with my neurologist. Her initial diagnosis is that my very high dose of Topamax for migraine prevention, that I've been on for twenty years, might now be just too high for my tolerance at my age. "I worry that we might be doing this to you, not a disease process," she said. My dosage of Topamax is extremely high--higher than what is usually recommended--in order to control my migraines. My neurologist--actually his NP--ordered more labs and stepped down my Topamax as a possible solution. Another possible diagnosis is myasthenia gravis; unfortunately, there is no definitive test for it, only markers to look for or rule it out in a big process of elimination. But my initial round of labs looked pretty good, at least from what I saw and could figure out on my own.

And, as is always the case it seems, I don't go back for a follow-up with my actual neurologist until mid-September after new labs are done next week. Sigh.

As so many of you know, Patience is Not My Gift. I'm angry and annoyed that I'm so limited. And that now there is so much more burden placed on Rick. Just running the vacuum can put me out of commission for an hour or more. He escorts me on short little walks in case I tire and begin to show signs of scuffing. Spending part of a day with Theo--holding him, playing on the floor, being active with him, a Very Busy toddler--makes me incredibly tired and sore, but that will always, always be worth it. 

In other news, August marks yet another year for Dept. of Nance. I've been writing here for twenty years now! It's astonishing, but even more astonishing is the number of you who have been here for so many of those anniversaries. Thank you, and a special Thank You to my Faithful Commenters, who engage in and encourage such a lively, witty, and intelligent discussion here. You're the best on the Internet, no doubt about it.

I'll write a more celebratory post soon, but I wanted to share this news with you, my friends and virtual support group. Thank you for being here, and thank you for writing over at your places. It's a joy to start my day with you every single morning.

In Which I Dust Off Some Cerebral Bric-A-Brac And Wax Philosophically Amish

Kind of a mixed bag today as I pull together several bits of Cerebral Bric-a-Brac. Have you a moment? A snack or beverage? Let's on, then.

~*~Alphabet Medicine. Despite following Doctors' Orders strictly and religiously, my followup labs last week were...disappointing and scary. My Vitamin D had dropped back to previous concerning levels, joined this time by Vitamin B12, a lab ordered not just by my Superhero Neurologist Dr. B, but also by my new PCP, Dr. Rebecca. I had suspected the Vitamin D issue since the old symptoms had been making a dreadful comeback, but was hoping I was merely tired or stressed out. But as they marched on, worsening and flattening me by noon each day, I started getting truly afraid. The lab confirmation was pretty much a formality. So I'm back to megadosing, then will double my D from 2K to 4K daily. Apparently some people need more Vitamin D to keep their levels up. And the B12 supplementation will help my memory issues. "You need to stop being so hard on yourself, too," Dr. Rebecca said. "And you have got to mitigate your stress." Sigh. This is now the third doctor to tell me these things as if they were Easy.  I keep thinking of Sartre.

~*~Hirsute Irony. One of my more upsetting symptoms is that my hair is falling out. Longtime Dear Readers here know how much this pains me; I am probably the single most vain individual in the world (not named Kar--shian). Most days, the only human who sees me is Rick, and he wouldn't care if I stayed in my jammies, uncombed hair, and no makeup all damn day. I do not, however, EVER do this unless I am gravely ill. Longtime Dear Readers also know my struggles with Cat Hair Overmuch, as in my two ungrateful rescue cats produce enough cat hair to create, independently, several other small cats a day. Why is there not a way for me to marry these Two Problems into One Solution? Would I, though, actually wear a Cat Hair Wig of orange marmalade and grey tortoiseshell? (It would really be the epitome of Recycling, though.)

~*~Language Cringes. Rick was reading some forum postings on the Nextdoor app, where he keeps in touch with news about the lake community. He asked me to look at a few. This proved to be a mistake, as I immediately began to focus not on the content of the messages, but on the dire grammar, mechanics, and usage of so, so many of them. Honestly, they were painful to try to read (especially since a significant number of their authors had not heard of Punctuation). One woman was lamenting that she was concerned about a local farmer being singled out as "an escape goat until it was proven that it was his farm that was the problem." Another poster was irritated about something in the bylaws being sneaked past him, and who knows what would "be the next thing coming down the pipe." After those two butchered idioms, I gave up. That was no way to mitigate my stress.

~*~Simple Pleasures. I've written here many times before about our community-wide garage sales down at the lake. September's weather was perfect, for a change, and my brother, niece, and I enjoyed visiting with each other--and our customers/neighbors--while all sorts of people picked over and bought some of our stuff. We had very few Amish customers this time; the men were lured away by a big steam engine exhibition at a nearby fairground, but their wives were out to buy some household goods. And yes, we did give out a few Victoria's Secret bags to some Amish matrons for their purchases, which were always met with much appreciation and German commentary between them, sotto voce. But far and away, my favourite customer had to be this one because of the figure she made, clutching her very, very iconoclastic purchase. Careful not to reveal her face, I quietly and unobtrusively took her photo from a distance. It is charming, I think you'll agree.

Image property of Nance Donnelly/deptofnance.blogspot.com

That crayon bank was a steal at 50 cents; the set of cereal bowls (Corelle, maybe?) went for maybe two bucks.  She was happy, in her calm, barely smiling, Amish sort of way.  I hope she gave it to her little boy or girl, and that the child was excited and clapped his or her hands in joy.  They would have had to be as surprised about that enormous purple crayon as I was when I took her money for it.  Honestly, it made my day.  It made my brother's day as well, and I know we'll talk about it every time we have garage sales from now on.

As I find myself stuck in The Slow Lane once again for a little while, struggling for that elusive Wellness, I'm striving for those Simple Pleasures and Small Gains--the Low-Cost Joys in a sort of Garage Sale Life.  (With cat hair, of course; always, with cat hair.)

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Is Anyone Out There?

Anyone at all?

Oh, I do hope so. I'm popping in for a Quick Hello, just to check in and give a brief Update Of Sorts, and then I am planning to get back to Business As Usual after my Jaunt next week. I've just about Had It with Being Unwell and even moreso with Talking About It. Let's wrap it up, then, and Move On.

The Medicals: My labs were a sort of mixed bag, but the whole Vitamin D Thing, which was the Most Important Of All, showed a massive recovery. I am well into the satisfactory/healthy range, so I am on the maintenance dose for life, and feeling so much better. No pains, no fatigue, and while my stamina and strength are still an issue, they are s-l-o-w-l-y increasing. My autoimmune system is still, in a word, terrible; however, unless I am plagued by recurrent infections (I am not), it's not a cause for concern. I no longer need to see my Superhero Rheumatologist who gave me my life back, but will now see the Internist she highly recommended. I burst into tears thanking this doctor and all but prostrated myself at her feet in a weeping huddle of gratitude.

The Universe Is Cruel: My dear friend Shirley wrote me a nice email, and in it she expressed sympathy overall regarding my health struggles, and mentioned specifically how difficult it is to practice serene self-care and recovery whilst the Orange Nightmare/Toddler In Chief is wreaking shitful havoc. It's absolutely true. I feel abused by the Universe, which allowed this abomination, yet felt it necessary to screw me again on Sunday, when it put a rogue piece of gravel in my path, and I fell and sprained my ankle. Because, Life is not difficult enough for me. At least I am used to resting--A LOT--and the sprain was mild. I am almost fully recovered today although stairs are a bitch. (Count me as a fervent disciple of the RICE protocol for sprain treatment).

The Jaunt: I am a little overwhelmed at the thought of, but am looking forward to, our upcoming Niagara-on-the-Lake jaunt as a true getaway from Everything. I think I need a real change of scenery. My wine-drinking capacity is sadly and sorely diminished, but I have no problem doing the Swish-n-Spit as we look to restock our depleted cellar. I only hope Rick is not too bored since we cannot do our usual long, lovely walks by the lake and into the trails. That will have to wait until autumn. In the meantime, we will find other things to do, like attend theatre and taking Short Walks.

I'm anxious for Things to be all back to Normal again. My patience--such as it is--is very frayed. I am restless and bored. This is not the life for me. At the same time, I am beyond grateful that my condition was reversible and treatable. I know so many people whose lives are forever changed by serious illness, and I know how very fortunate I am.

Thank you for staying with me. I'll be back real soon.


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I Stop Somewhere Waiting For You

Things have been quiet here at the Dept., I know, although I've been visiting your places and chatting here and there. I'd like to explain, take a little more time away, and then get Back To It here as soon as I possibly can.

For months and months now, I've not been well at all. I'd been losing ground at physical therapy--which had been keeping my Migraines at bay--and I could not shake this crushing fatigue. Then the deep bone pain and muscle pain started, and then lower back pain, too. And all along--for months and months--I'd been feeling so unlike myself. Confused at times, indecisive at others, still other times, I'd search for a word in the middle of a sentence while talking. (So embarrassing.)  I felt like I was in a fog all the time. Writing became such a chore; reading, an impossibility. I'd also seen my eye doctor back in December for severe dry eye and gotten on a prescription for that, with his suggestion that I get a doctor to test me for Sjogren's Syndrome once he heard the rest of my complaints.

That's where and how my Odyssey began.

I won't bore you with all of the details. My quest took me from the eye doctor to dear Dr. B., my neurologist, who ordered some labs to test for Sjogren's and a few other things. From there, I went on to a waiting list at a rheumatologist. All the while, I was losing more strength and stamina. Pain kept me from being able to sleep and carry on with my normal life. My weekly grocery store trips became my last vestige of normalcy, and they cost me dearly in terms of their aftermath of pain and exhaustion. Many times, I sat in the parking lot, waiting until I could bring myself to drive home, leaving heavy items in the car for Rick to bring in. Putting things away took forever as I rested often.

The rheumatologist's initial diagnosis was palindromic rheumatoid arthritis and possible Sjogren's, and a couple more labs were done. No results were conclusive. I had a brief respite after a steroid blast, but another try a month later when the pain roared back gave me no relief. In desperation and in debilitating pain, I contacted a friend who is a sonographer for the Cleveland Clinic. She pulled some strings and got me in to a top rheumatologist there.

In a two-hour consultation, this doctor took an extensive history and then narrative of my condition: its origin, development, symptoms, and affected areas. Then she examined me and asked me about my lifestyle, diet, and habits. Then she ordered twenty-two lab tests. And she identified at that moment what she thought it could be, something simple and, most importantly, reversible, although it would take some time.

The labs confirmed a couple things I already knew: one, that I have a lousy immune system; two, that I do not have TB or any thyroid issues. But the labs also confirmed what this doctor suspected from my symptoms and examination: my problem is not rheumatoid arthritis--those factors came back negative. So did Sjogren's. My problem is a severe and prolonged Vitamin D deficiency.

It's astonishing to me that something that seems so small and so banal-sounding can wreak such havoc. I was being tested for heavy metal poisoning, aluminum poisoning, arsenic, Lyme disease, even Parvo! They were testing my blood for markers indicating lupus, MS, rheumatoid arthritis, and other frightening things. But they all have some of the selfsame symptoms in common, and let me assure you, these symptoms are frightening to endure. I am beyond grateful not to have those illnesses, and I look forward to the end of my misery, whilst sufferers of some of the aforementioned illnesses must only manage theirs.

My deficiency is such that it will take months to recover my health. I am currently megadosing twice a week (50,000 IUs) for two months, at which time I will be retested. The doctor is confident that I will recover completely from this, but has told me that I will need to supplement Vitamin D3 for the rest of my life.

I can do that.

In the meantime I have to work very hard at Being Patient. That, as many of you know, is not my gift. I want My Life back. I want Me back. I want my brain back. I am tired of being tired. I am tired of not being able to Do Anything, especially the Things I Love. And I am so very, very tired of Pain. My heart breaks for those who must live with it as a Constant Presence Lifelong.

I hope I find someone here when I can finally return.  And I hope I am finally Me when I do.


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Rally For Thanksgiving: The Best Medicine

Today, November tried its hardest to give me a Melville Day. (See yesterday's post for a full explanation.) The sun had apparently worn itself out after its extended engagement earlier in the week, and we also had rain, that cold, ugly rain that greys up the sky, the day, and the soul. Had I not had a quick morning checkup with My Hero, the neurologist, I probably would have spent the whole day trying to justify remaining in my jammies and fleece robe, doing just enough Domestic Goddessing to stave off Guilt while intermittently chatting and playing Words With Friends via the Interwebs (on my phone, as I said I would never, ever do, for those of you scoring at home).

Instead, I got dressed and coaxed my short short hair (still growing out) into yet another new iteration and grabbed a bottle of dry riesling and headed out to see my doctor.

Yes, I took wine to my doctor's appointment. Dr. B. is another reason I like November.

My original neurologist, whose name I don't remember, was a Filipino gentleman and was kindly and sweet. He was tiny and smiled all the time, and he was quite thorough and methodical. When he decided to retire, his practice was referred to Dr. B., a Cleveland Clinic neurologist whose examining rooms were outfitted with laptops. My first appointment was memorable in that he complimented me on not misspelling "mycin" when I wrote that I was allergic to mycin drugs. "Most people spell it with an a, as in myacin," he said brusquely. "I find that very irritating." I looked up at him and smiled. "I teach English," I said. "I'm very careful about spelling."

From that moment on, we had a great deal to talk about, and sometimes now it is difficult to squeeze in my migraine condition. We have discussed literature, education, language, oh, all sorts of things. And because it is a migraine trigger for me as well as our shared passion, we often discuss wine. As it happens, Dr. B. is a former resident of Toronto, so he is quite familiar with my favourite wine regions. "I'm bringing you a bottle of a truly extraordinary dry riesling," I said to him last May. "It's from the Bench region, and you will love it. It's an award winner; it's balanced and not too sweet, but there's not a lot of minerality." He looked at me out of the corners of his eyes as he poked savagely at the keyboard, summarizing my office visit. "I like the German style. I need a little sweetness. I can barely go off-dry. Did we try magnesium, once a day, 250 milligrams?"

Today, I set the bottle of Vineland 2009 Dry Riesling, (Gold Medal Winner) right in front of that poor keyboard and waited for him to sweep into the room. (Truth be told, I feel equally sorry for the hinges on the doors.) "So," he said, with emphasis. "How have you been? How many headaches?" He looked up from the folder to me, then noticed the bottle on the computer table. "Is this for me?" He smiled, then looked at the label. "Vineland? Is that...New Jersey?" I shook my head and laughed. "No, Dr. B.! Canada, remember?" He rolled his eyes. "Of course," he said. "Niagara. But, you do know about Vineland in New Jersey, don't you? It's the largest city in New Jersey by area. It's huge, but there's nothing there. It has only about sixty thousand people." And that's all it took. From there, we talked about New Jersey being the Garden State, his attendance at a German dinner at a local restaurant, raising his kids to speak Ukrainian in the home, ESL instruction, wine, weather, and about a dozen other things, including my migraines. When it was time for me to leave, I had thoroughly enjoyed my visit, and so had he. He thanked me again for the wine, walked me to the front desk, chatted some more, then put on and zipped up his jacket. "I'll be back at two," he said and sauntered out the back door.

"Was I his last appointment of the morning?" I asked. The receptionist smiled. "Yep! He was actually supposed to have been gone about twenty minutes ago."

On my way home I noticed how, because of the rain, the tree trunks were black, providing a dramatic contrast for the remaining autumn leaves. The crimson, gold, and cinnamon foliage looked even more brilliant against this darkness and the steely sky.  My windshield wipers swept across to clear away the raindrops every now and then.

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...But just barely. Holy crap, what a ridiculous, screwy, confusing almost-week it's been. You know I won't get into a bunch of Medical Details, but I want to let you know what the deal is so that those of you who have been so kind and concerned are all squared away on Things. Plus, "My Condition", such as it is, will be informing my life for a bit of time to come here, and that will affect my posts here at the Dept.

Anyway.

Surgery did not quite go as planned. Once the doctor got the instruments into the four portals in my shoulder, he found that there was NOT a bigass tear in the rotator cuff. The MRI had provided a false read. It was, as I had known all along, my second case of adhesive capsulitis--this time in my other shoulder. The adhesions were horrible, and he birsed them all away and cleaned up the area. It was only after he did so that he was able to finally fully raise and rotate my arm. My "rise" from the anaesthesia and return home later that day was largely unremarkable--those of you who have had surgery know all about the labors of trying to sleep and the post-op discomforts, etc. That is nothing out of the ordinary. I had to keep my arm in a sling for two days.

After those two days, I went to physical therapy and the doctor and got all the tape and packing and the four small stitches taken off/out. The sling was taken away, and I was given the first round of physical therapy, and the doctor's blithe philosophy, which is: "It's going to be hell for the next 4-8 weeks. Intense. And I don't believe in pain meds. It's pretty much Aleve and suck it up."

Okay.

So let me tell you this: I don't "believe in pain meds" either. I had adhesive capsulitis before. And the pain is excruciating. I cannot describe it except to tell you that it is like knives at one time, then like insistent throbbing the next, then like someone taking a rope and wrenching your arm out of the socket when you least expect it. And this could all occur in the space of, say, two minutes. Over and over again twenty-four hours a day for months and months. Aleve does not even begin to do it. So, doc, don't give me your bullshit, okay? How about this instead: "I know you'll be in a lot of pain, and believe me, I'm sorry. But pain meds bring along a whole other set of problems and I'd rather not set you down that road. Let's be realistic together and agree that therapy will be painful, but it will be worth it."

Yikes.

Sorry. I'm being a bit negative. Sigh. Here's the thing. I'm not real sure the surgery was entirely necessary at this point. As I said, I've had this before, and I got through it without the surgery; it merely ran its course, and I had therapy at the end when it "thawed", when I was not in as much horrible pain. Now, I'm still in the terrible pain I was in before surgery, and I'm in pain from post-op, and I have the soreness and stiffness of working the joint and muscles that are slack from not being used. I don't get it.

I am very grateful that I didn't have the torn rotator cuff. That surgery is nasty to come back from. I'm grateful to be able to start school on time, but I feel so weak and tired and not 100%. I start in just a few days! It feels impossible. And I wonder how they (both my family doctor and the surgeon) could have been so wrong with the MRI. Last time, the other surgeon (this guy's brother, ironically!) looked at the MRI that had been read as a tear and immediately diagnosed adhesive capsulitis and that it was a false tear. No one really answered my questions adequately, and it's really just too late now. "It is what it is" and the best I can do is just do my therapy and get over this hump.

I want very much to be well. And soon.

This is sounding un-Nance-like. But we all have our Off Times. I am a firm believer in Wallowing When Necessary. I know many of you will want to suggest Drinking Overmuch as my Home Therapy. I have considered it and discarded it for now as Dangerous. I like Drinking as an Indulgence, as a Happy Thing or as a Rewarding Experience. Drinking now would seem like a Desperate Thing. Not good.

Ah, well. There it all is. But, I am back. And soon, the Rest of Me shall be as well. I don't often wallow long. But I do think I have reason.