5 From The Frozen Tundra: Is This My Life Now?

 

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Let me just say right here and right now:  the eventual spring of 2026 had better be one hell of a lovely, warm, beautiful one. And the sooner the better. I have had it with this winter and all of this abusive effing snow. And painful wind. And helplessly hoping that someday the temperature will rise to the lofty heights of The Twenties Fahrenheit. My heating pad is my constant companion.

If you are one of those crazies who Thinks Snow Is So Pretty, or Loves Winter, or Goes Skiing Or Sledding, or Just Loves Winter Cozy Time, DON'T YOU DARE SAY A WORD ABOUT ANY OF THAT TO ME. I AM NOT IN THE MOOD. 

Thank you.

I am fighting this winter with every fibre in my body. It is not going well. Aside from that, what else have I been doing? Let's have a review.

1. I finally read The Correspondent. I read the review that Julie wrote, and she enthusiastically urged me to buy the book, and I'm glad she did. It was wonderful. During this illness and during wintertime, I have trouble focusing/concentrating and mushbrain, and I worried that I wouldn't be able to fully immerse myself in it. That was not the case. This book was so engaging and charming, and I found myself at times identifying so strongly with the titular character. After reading it, it was immediately and lovingly placed on my Favourite Books shelf. Now I'm reading a scholarly nonfiction work called Dark Renaissance about the life and times of Christopher Marlowe, playwright, poet, genius, and spy of Elizabethan England who was murdered before the age of 30. We'll see if I can juggle it along with The Age of Innocence for CBBC.

2. Over the weekend we had the ridiculous snowstorm. On Monday Jared and Jordan moved to their new home during the leftovers of the storm. (And poor Jared has a broken foot that needs surgery this week, and has been in a walking boot for weeks.) While the movers trooped in and out of the house with all the stuff, I was in charge of Theo. Rick had gone over earlier to snowblow their driveway. It snowed the whole day, and the front door and back door had to be open the whole time. I wore my heated coat. Theo stood at the front window watching them bring items in, excited about seeing all their things coming to The New House. At other times, we played Airport and Airplane in his parents' big walk-in closet. This is a very happy move:  not only will they be less than 20 minutes away instead of an hour, they needed the extra room because Theo will be a big brother in August. If he has his way, the new baby will be named Crocodile.

3. I have been to my doctors--two of them in two days this month. All I can say is that it's devastating to hear two days in a row from medical professionals that there really isn't anything they or medical science can do for me. I am in a sort of dead zone of medicine. There is new research ongoing, mostly due to Long Covid, so that's at least something. But right now, aside from some stronger muscle relaxers that can help with my pain at night, there's nothing. I've learned how to rest, but it still feels like giving up to me. Even showering can wear me out. And I used to shovel the driveway and take my walk on the same day!

4. And speaking of those Rest Days, I have actually gone without my mascara on those days! I used to think that was a Venial Sin pretty much, but now, I just don't care. AND! I don't wear real clothes on those days, either. I wear a Lounge Outfit and a cardigan. I mainly do this for the technicality; no one can accuse me of wearing my jammies all day if I am officially wearing a Lounge Outfit and a cardigan (even though it looks and feels like I am doing just that). Rick enthusiastically supports this and says ridiculous things like, "You look great!" and "I tell you all the time that you don't need makeup", but the most important thing he says is, "Why bother when you're not going anywhere?" and this is the comment that really sells it for me. I mean, duh.

5. Can you nap? I mean, actually fall asleep during the day? I cannot, and I never have been able to. Obviously, it would be very helpful these days, but try as I might, I just can't. Right now, Rick is sleeping on the couch; it's 4:30 and Judge Judy is yammering, but he's sound asleep. His breathing is heavy and deep. It happened almost instantly--one moment he was talking about being sleepy, and the next he was doing it! Sleeping, just like that. I also cannot put a blanket on over my clothes. It just feels awful to me. I can, however, put a blanket over my Lounge Outfit. It's completely different somehow. (Just now, Rick said very clearly, "Should we go in and start dinner pretty soon?" FROM A DEAD SLEEP. How? I DON'T GET IT.)

Dinner. Ugh. I have been shopping for, thinking about, planning, prepping, cooking, and cleaning up after Dinners for almost FORTY-FIVE YEARS. I am starting to feel about Dinner like I do about Winter. It's almost abusive and brutal anymore. WHEN WILL IT END? How can I continue to endure it? Sigh. I might have Rick clear the ten feet of snow away from the grill and have him start making Dinner. I've had enough.

Better Living Through Little Bottles And Jars: A List Of Stuff I Take That's Not Medicine

Listen, I'll be honest. This is a real Hail Mary of a post because I woke up with a headache (not unusual now with EB/ME) and it developed into a migraine. I had to go to a doctor's appointment that was not encouraging, and the weather is SO GREY and SO WINDY and SO COLD and I'm ... well, let's just not Go There.

One of the discussions I had with Superhero Neurologist Dr. B was about medications. I am not a fan of loading up on a bunch of them, especially if I'm treating symptoms only. If I can manage them another way, that's what I'd rather do. One thing I am willing to take is vitamins or supplements that my doctors recommend if my labs show that I need them or if there is research that shows they will have a positive effect. Here is a list of

Non-Meds That I Take Regularly 

1. Multi-vitamin formulated for women

2. Vitamin D3

3. Vitamin B12

4. Magnesium

5. Iberogast

Because I am on Topamax (generic name topiramate), my body's ability to absorb many vitamins is compromised, especially Vitamin D. I had a severe Vitamin D deficiency several years ago that made me desperately ill and set me on a search to multiple doctors to find out what was wrong with me. It took me a year to recover my health. As a result, I must supplement D3 for the rest of my life. The same thing goes for B12; my levels for that vitamin were also low, and it helps with peripheral neuropathy. I take Magnesium to help with migraines and balance. The Iberogast was not prescribed, but it's an herbal supplement (drops) that help to calm my stomach and gut. Digestive problems are another symptom of ME that I deal with. I find this supplement very helpful for that, and it's just stuff like chamomile, lemon balm, and peppermint. 

Some people call vitamins and supplements the ingredients for expensive pee. I'm following doctor's orders, so I feel vindicated. How do you feel about vitamins and supplements? Do you take very many?  

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It's Ketchup Time Again--A Tyrant Cat, EB/ME, And My Brain Finds Another Book Mistake

 Let me just start right in by saying that I am immensely thankful for all of you that manage to write so often over at your spots. You are Miracles and Superheroes, and you make my morning coffee even more pleasant. Sometimes, I have to peer over a giant orange tabby head to see you, but it is always well worth it.

Speaking of giant orange tabby cats, I think Piper's behaviour was kept in check by Marlowe, or she was a sort of calming influence because since she has been gone, he has really become a loudmouth and a tyrant. I'm not used to being bossed around by anybody, let alone a cat, but it would seem that I am that cat's bitch. And I'm beyond sorry that I ever, ever put ice in his water the first time. Is there anyone else whose cat demands his beverage On The Rocks? 

On the rocks. Sigh. Let's get this onerous part out of the way. After more than 30 different blood tests, an MRI, two EMGs, and a few doctor's appointments, I've been diagnosed with Epstein-Barr and Myalgic Encephalomyelitis (EB/ME). ME used to be called chronic fatigue, a term that you're probably more familiar with. The way it was explained to me is that the E-B likely came from my severe bout of mononucleosis when I was 17. The virus lies dormant forever, like chicken pox. It can resurface anytime and cause E-B in some people the way the chicken pox virus causes shingles. My E-B is severe and accompanied by unusual stress, leading to ME. 

I can't go into much detail about the unusual stress, but I'll just say this:  in late August and half of September, we helped Sam look for, find, and buy a house. For him and Zydrunas. In all of October, we have helped him clean, refurbish, and furnish the house, move into it, and provide whatever support we could throughout. Jared and his family have been monumental support as well. All this had to be because someone's social media wasn't as fun as it used to be. 

In November I'm going to try to post every single day and ignore all that stupid, unfair bullshit about my health situation and everything. I have to live it, but I don't have to talk about it ad nauseum here in my blog. I always appreciate your kind comments and any advice or support; I'm just not going to make it a topic here. I trust that you'll be grateful.

Before I go, I want you to check out this passage from Meet Me in Another Life by Catriona Silvey. I read this a while ago and greatly enjoyed it, even though its genre is not usually one I enjoy. Julie reviewed it and I was immediately drawn in. Anyway, I was reading intensely when I was jolted by this passage:

Maybe you're not a knitter or a crocheter, so this went right by you. When you knit, you use two needles. But when you crochet, you use one, and those who crochet almost universally call them hooks, not needles. Did this interfere with my enjoyment of the book? No, it did not. Do I wish that my brain didn't constantly notice these things? Yes, I do. Sigh.

Right now, I'm only reading our CBBC book, The Joy Luck Club, even though I have several books in my TBR pile. And let's not even talk about my stack of The New Yorker magazines. As I said, I'm looking to November for some fresh, renewed time. Maybe that will be more reading time. Maybe that will be less rain and possible short walk time. And for sure I'm going to try for more blogpost time.

Thanks for showing up, both at your spot and here in Comments. You make my days.

THE Emotional Support STD Nitpicky Book Chat You've Been Waiting For

 It's a good thing we're not meeting for coffee because we'd be sitting for hours and hours, and you might get all jacked up on caffeine, whereas I--a decaf drinker--would probably be in and out of the bathroom a lot after having switched to Just Ice Water after my second cup.

Anyway.

I have a lot to talk about in no particular order, so let's get started.

You'll Be Glad To Know That I Do Not Have Syphilis.

So, I went to my superhero neurologist to try and figure out what the heck is going on. He ordered two dozen blood tests after a thorough exam. As the results came in--and some are still coming in--I was shocked to find out just how thorough Dr. B was being. He had my blood tested for all the hepatitises (hepatitisi?), various levels of vitamins and minerals and metals, and of all things, syphilis. I cannot wait to go back and see him next week for my EMG and to ask him Just What Kind Of Girl He Thinks I Am. So far, everything has been negative or within mostly normal levels. The initial diagnosis is Peripheral Neuropathy, but he is not sure of the underlying cause for it. I'm also getting a thoracic MRI to look at my spinal cord whenever the insurance gods/company says I'm allowed. In the meantime all I can do is take one day at a time. I cannot build strength or stamina; the condition does not allow for that. I miss my walks and my life. Honestly, I'm scared.

Pretend Kermit The Frog Is A Picky English Teacher/Editor And Sing! It's Not That Easy Being Me.

The book Orbital is beautiful and breathtaking on every page. As I read it, I felt transported and awed. The cadence of the book is somehow sweeping, yet measured. The language is poetic and majestic without being overwritten. I cannot tell you how many times I had to put the book in my lap and look up from it just to savor a moment of language.

Until I read this:

It's really something, this typhoon, Pietro says when he comes to join her. They watch it hone in on the Philippines and Taiwan and the coast of Vietnam. Its spiral flings clouds for hundreds of miles around a hole-punched siphoning eye. (p84)

My own eye felt hole-punched. With a big red-hot stabby thing. How could she? How could Samantha Harvey make this mistake? How did it get past editors? UGH.

Hone--to sharpen a blade or refine a skill

Home--to focus on a target or goal; to move or aim toward a destination with accuracy

This irritates me so mightily. It's right up there with the misuse of palette/palate/pallet (they're all different things, people!), and...well, to be honest, pretty much everything. 

Still, 99.999% of Orbital is wonderful. Consider this extract from a paragraph:

Our lives here are inexpressibly trivial and momentous at once. Both repetitive and unprecedented. We matter greatly and not at all....death is so close. Life is everywhere, everywhere.

I Can't Swim, But My School Wasn't A Boat

Speaking of books, I also finished The Wager, a terrific nonfiction book about a British shipwreck and mutiny in the 18th century. Engie reviewed it some time ago, and I was intrigued. I also discovered it was written by the same author who wrote The Lost City of Z, one of my favourite nonfiction books, so I knew it would be engagingly written. And it was. I have no quibble at all with the book, but there were several things that just astonished me. First of all, many, many of the career seamen on the ship DID NOT KNOW HOW TO SWIM. Apparently, this was not unusual among seafarers. How in the hell do men decide to join the navy or be a mariner, knowing they could be months or years on a boat that could be swamped by waves, fully cognizant that they could become shipwrecked or lost, and still say, "No problem. Swimming is not a skill I'll need when out on the seas with no land in sight"? 

I think you need to read this book to marvel at all the other incredibly ridiculous decisions these men made in the name of service to the crown, personal honour, and loyalty to their commander at the expense of their own personal safety and survival. I wanted to smack them so, so many times. And tell them to GET REAL FOR HEAVEN'S SAKE.

Walmart Needs To Make Up Its Mind About Aquatic Animals And Safety.

On a slightly related watery note, if you've been a longtime reader, you know that if there is an animal story in the news, I'm all over it; that is my vow to you. Credit for this one goes to Rick, who knew I'd be charmed by the headline. I think you will be, too:

EMOTIONAL SUPPORT ALLIGATOR NO LONGER WELCOME IN PENNSYLVANIA WALMART

I want to thank David K. Li, the reporter on this important story, who provides us not only with this fantastic headline, but the story and video that I want all of you to go read and watch right now. In case you are hesitating, the alligator--leashed--sits in the shopping cart whilst wearing a dress and, in another scene, luxuriates contentedly in a fur collared sweater in her owner's arms. This alligator is about as dangerous as a bunny rabbit, yet Walmart has banned it. “The safety of our customers and associates is our highest priority,” Walmart said. “We welcome service animals in our stores, but it is unacceptable to expose members of the public to potential danger.”

Oh, really, Walmart? This is pretty ironic, coming from the place that sold radioactive shrimp to thirteen states. And if you bought a bag of that irradiated shrimp, don't return it for a refund, say officials. Simply throw it away! Share that radioactivity with the world as it rots in a landfill. Did you eat it? Are you having ill effects? Contact your medical provider. Will Walmart pick up the tab? Oh ha ha it is to laugh.

Maybe seek some solace from your emotional support alligator. Just don't take it shopping with you when you go get your prescription from the Walmart pharmacy.

And While I'm Feeling Snarky...

I don't get how college football is a bigass deal. Maybe it isn't in your state, but I'm in Ohio, and a lot of people here are huge Ohio State fans, and they are obnoxious about it. Here's what I don't understand:  how can you be such a big fan of a college you never even went to? I got my undergrad degree from Bowling Green State University, and I could not possibly care less how their football team does. Ever. Also? Why does Ohio State get all precious and persnickety and call themselves The Ohio State University? Why the The? It's stupid. And pretentious. I automatically refer to all the colleges I went to as The now:  The Lorain County Community College; The Bowling Green State University; The Ashland College (now University). I also took some grad classes at The College of Mount St. Joseph, but they legitimately have a The in their name. I urge all of you to add a The to wherever you went to school just to diminish Ohio State's use of it for prestige and to call attention to how positively ridiculous it is.

Okay! That was a lot. Tell me the The names of your schools and All Kinds Of Other Things in Comments.

image credits:

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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.

wine doctor image

...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.