Fall

Feeling colorless and lackluster

 I don't know what it is about fall, but looking back over the last few decades or so, my health definitely takes a nosedive when summer departs.  The end of September is here, glorious October with it's famed 'bright blue skies' is looming and I'm once again feeling lousy.  Yes, I am sensing a pattern.

I know it's not my attitude towards the end of summer; indeed I love living in what constitutes a roller-coaster ride of seasonal ups and downs, anywhere from -25F to +95F all in the space of a few months.  There's never time to get bored, not even in our long winters, for I'm still outside as much as I can be with the cross-country skiing in all but the most bitter weather.   And winter brings on stained glass season, so what's not to love?  

 
 Many visitors have remarked, "You must be very sad to see the growing season end," and I have always replied, "Yes and no."  I'll miss my petunias, no doubt. But to tell the absolute truth, I could not keep up with gardening all year round as intensively as we do from April to October.  (My hat is off to those who do, you're amazing.) 


 

Polka Dot plant  Hypoestes phyllostachya

Six years ago in the first week of October I was taken by ambulance (against my wishes) to the emergency room from my doctor's office because I asked what the symptoms of a heart attack felt like, which, unfortunately was interpreted as, "OH, you're having a heart attack??"  

No, I wasn't, thank goodness, but I was whisked away by a very efficient team of wonderful first responders who couldn't get my heart rate and blood pressure down no matter what they tried. The ride, in turn, earned me a night in the hospital, a battery of heart tests (which I passed) and the diagnosis of 'insufficient thyroid medication'; oh, and a $10,000 bill.  I went home feeling the same way as I'd gone in, heart palpitations, weird blood pressure, joint aches, headaches, vision issues, in short, business as usual.  The prescription afterward?  Take more thyroid medication and let's try another antidepressant. 


What I did six years ago was what I've done for years, ride out the symptoms and try to learn to live with them, and curse my unpredictable thyroid for being a tantrum-throwing diva.  Make up your mind already, gland, you can't go into overdrive one day and then decide to take a nap the next.  Consistency is all I'm asking for.

I also read everything I could get my hands on related to thyroid and treatments and also looked for a doctor who could help me more than handing me another Prozac-like prescription.  I thought I'd found one in 2011, but my hopes were about to be dashed.  Enter the Polar Bear saga: 

*If this post isn't already long and depressing enough, here's a link to the Polar Bear post....detailing my disastrous appointment. 

 Polar Bears Are Mean

Condensing the above link down to the nitty gritty details, the Polar Bear Doctor taunted me, "I do not know what else to tell you.  Do you want me to put in your chart that you have 'fibromyalgia'?  If I do, you will wear that title for the rest of your life and every doctor who sees it afterward will immediately think, 'Ha, another one of those people, who have 'fibromyalgia'."  

Well, alrighty then, I guess she told me.  I was ashamed of myself.  I had goofy symptoms, I was too fat and I had only myself to blame. 

However, the doctor's cruelty did make me take a hard look at my diet and exercise; clearly she was right, I wasn't helping myself with my bad habits.  Still, I could have used a lot less shame.


Enter Leslie Sansone videos, heavy weight lifting, a mini-trampoline and weighing my food and counting my calories (which I'm still doing today, almost four years later) and a sustained forty-pound weight loss in the same time frame.  Yes, I have at least that much to lose yet, but it is not budging, which is ok.  I'd be happy to stay where I am weight-wise if I felt better.

 Yep, that's me taking a 'do these pants make me look fat?' selfie amid some of my weights (the big ones are upstairs. ) Take a gander at that pile of walking and weight training DVD's.....can someone say addiction? And wow, the house could use a deep-cleaning, but dust will wait.  Trust me, it always does.

 Cutting to the chase, I finally found a new doctor who after months of adjusting my thyroid medication and a battery of lab tests, diagnosed Lyme disease.  I was sitting in his office hoping against hope that this wasn't the diagnosis.  

Don't get me wrong, there are no 'better' diseases I would prefer to have, they are all equally dreadful.  But Lyme disease?  Great.  Once again no doctor in mainstream medicine will take me seriously.   Lyme disease is a very controversial topic in medicine.  The standard treatment is a short course of antibiotics and voila, you're cured.  Any lingering symptoms afterward are all in your little head, you silly ninny.  

Except when you're not cured.

So, fast forward to the current physician telling me that if it looks like a duck, walks like a duck and quacks like a duck, it must be Lyme disease.  

I've done a lot of reading about Lyme disease and to say the diagnosis is controversial is putting it lightly.   Most mainstream doctors put the mishmash of admittedly bizarre symptoms down to hypochondria or at the very least, psychiatric problems/attention seeking that some, like the Polar Bear, choose to use 'fibromyalgia' as a label.  A catch-all for people who think they suffer but have no medically explainable cause.  A head case, at least according to my long ago nasty doctor.

In the past I've tried to ignore my symptoms, but it is not possible.   Curiously with me, most of my pain is on the left side of my body, but also maddeningly random is how pain and swelling will travel from shoulder to foot to knee to toe and back again, all with no apparent reason.   

And let's talk headaches, oh, let's not.  On the days I don't have a headache I feel as if something is missing.  Vision issues are also a major concern; I have 'floaters' constantly which are annoying, making me blink in order to see things clearly, but the really scary ones started a year ago, scintillating scotomas.  The first indication one is coming on is an inability to focus on faces or written words.  If you've had your picture taken and a flash was used, the lingering image of the flash seared on your eyeball is the next step, leaving you with only peripheral vision.  After a few minutes, a jagged lightning-like static appears that lasts up to a half hour.  I've had them while driving and simply have to pull over to the side of the road and wait until my vision clears.  I asked my optometrist about scintillating scotomas, and he said they weren't unusual; along with the increase in floaters, it's just another part of the aging process.  The scotomas originate in the brain, not in the eye anyway.  It's a brain thing. 

I remember the first time I had one, Carl was driving and an approaching car's mirror flashed in the bright morning sun.  I was  seeing the spot in my eye for awhile, just like a camera flash, and thought it would pass, but then was alarmed when I could see a car coming in the other direction but couldn't see all of it, just the side.  I was scared, now what?  Am I going blind?  What is this?  Then all these squiggly, fuzzy light patterns started up.  I told myself to just breathe, this will pass.  Sure enough, after a half hour, my normal vision returned and brought with it a massive migraine. Last October and November I had over forty of these episodes, sometimes twice a day, and though I know they'll pass, they are always unsettling.

 A year ago, I was giving a tour to a bus group when suddenly I felt as if I would faint.  I've never fainted in my life and really didn't want to fall over in front of a bunch of tourists.  (Yes, come to see our garden and I'll just take a nap while you stroll around.)  I managed to remain upright, but the weakness persisted for a few hours.  Scary stuff.  

More blood tests, which revealed nothing out of the ordinary until my new doctor, a Lyme-Literate MD (LLMD) did some more in-depth blood work and noted that I had high markers for inflammation.  I had the blood test for Lyme again and it came back positive.  I was started on a course of antibiotics in February.

  I started to feel a bit better in April, and noticed a lessening of some of my joint pain and joy of joys, only one scotoma in the last six months.  Things were really starting to look up.  I was able to get through the gardening season and not feel dreadful.  I even had some energy.  I was on the waiting list for a treatment in trial for Lyme and hoped for the best.

Then I made a mistake in the last week of August.  The Back Eight needed cutting, the hay was ridiculously tall.  I usually try to cut the field at least twice a year but with all the shenanigans around here with garden work and taking care of my mother, I let the field go.  Once our tour season wound down  Carl was back to cutting stone for Castle Aaargh and I figured it would take me about two afternoons to get the job over with.  

Altogether it took about eight hours to cut the field in low gear.  My tractor is small, my mower, known as a bush hog, is narrow, and it took all 50 horses to get through the hay.  Both days were hot; I should have waited for cooler weather, but once I started, I didn't want to quit. The tractor was overheating due to weed seeds and bugs clogging up the radiator, so I was getting off every round or so to clear off the screen.  I neglected my own thermostat and was sweating profusely.   Hindsight is 20/20, I should have brought along some water.  

I woke up the next morning with bladder urgency.  Oh-oh.  Better drink, drink, drink to head off an infection.  Of course, that didn't work.  After a day of drinking water by the quart, the next morning it was worse.  It was obvious, I have to go to the doctor.  I opted to go to a walk-in pharmacy to keep costs down; we carry a very high deductible so everything is out of pocket.  

The nurse gave me a prescription for antibiotics and a pain reliever and I was on my way home.  Good, I thought, in a few days this pain will be behind me.  

Except it wasn't.  I took all my meds and still was chained to the bathroom for three days.  I called the clinic again and was told to go to another clinic for more advanced cultures.  Off I went, gave my sample and was told, nope, no infection. Sometimes it takes awhile for the bladder to calm down after an infection; try Ibuprofen, or you may now have OAB, aka overactive bladder.  Try to retrain your bladder not to go so often.

I went home and tried to restrain myself from living in the bathroom, but the pain was constant and annoying.  The only relief was when I voided; immediately afterward it felt as if I had to go again. 

Another few days later I made an appointment with my general practitioner; another urine test, all clear, bloodwork came back  fine; hmmmmmm..... have you ever heard of interstitial cystitis?  Here's a referral to a urologist.

Oh, dear.  We can't afford another fruitless battery of tests out of pocket again; so I kept the referral in my pocket and hit the internet looking for support groups.  I called my LLMD and was told that Lyme can also be a very common culprit with bladder and pelvic issues.  Indeed, all last winter I was plagued with unremitting rump pain and my doctor had prescribed hemorrhoid suppositories (I didn't have them) to a gastroenterologist,  pilonidal cyst surgeon, and another specialist in colon issues only to be told I have no issues in any of those departments; my next stop was a referral to a pelvic floor pain therapist.  Cost of all these doctors is astronomical and what is worse, there's no relief.  

Fast forward another month and I'm still dealing with the bladder issues.  Some days are worse than others, but I can see this is something else I'm going to have to learn to live with.  I'm in the midst of intravenous treatments for the Lyme disease which I have hopes will help.  

In the past three visits for the IV therapy, I've met other patients who share most of the same symptoms.  And I will say this, if Lyme disease is a 'made-up' illness, there certainly are a lot of people who are delusional.  So far I've met five men who were all told the same thing by their former doctors, "We can't find anything wrong with you.  You must be a hypochondriac."  

Are we all hypochondriacs? I don't think so.  I have high hopes that eventually there will be more known about this disease and that the warring factions of the health industry will come to a truce and start working together to find, if not a cure, at least palliative care for those of us who are afflicted.  

It's time to stop shaming patients for not feeling well.  I haven't met anyone yet who wants to spend their time and hard-earned money going from doctor to doctor; all of my fellow patients are people with places to go and things to do; we have no interest in being sick for sympathy or attention.

I was bitten by a deer tick a few years ago, but my symptoms started in 1993 when my thyroid failed.  I never recall having the trademark bullseye rash, most people I've met don't either.  Since I am an outdoorsy type and garden extensively, it is not at all out of the realm of possibility that I would eventually contract Lyme disease.  However, I've met patients who never ventured out into the woods, owned pets or gardened who also have the disease, so there is still a mystery surrounding diagnosis and treatment.

I realize this is a gloom and doom post, but I did want to raise awareness of Lyme disease with my fellow gardeners and readers.  I'm not sure where this road will lead, but none of us do know the future.

  One day at a time; the present is all we have.  Things could always be worse.  (Oh, I hope not.......!)

I promise my next post won't be such a downer.  :-)