This story ran last year, but I have updated it and am rerunning it in a series with others, in honor of May being Lyme Disease Awareness Month. Although this post doesn’t deal with Lyme disease per se, it is a forerunner to the others that do. And anyone who’s ever had a “mystery illness” will be able to identify!25 years is a long time to constantly ask yourself, Why am I sick? and to fight a disease or mystery illness that baffles you and your many doctors. You get. So. Tired.Click To Tweet It’s taken 25 long, painful years to track down the guilty gang of three and their many groupies who have demonized me for so long… yet I never gave up. Here’s my story.
Please note: As with all my health-related posts, this is in no way intended as a means for self-diagnosis or medical advice. This just happens to my story. And as always, if you suspect you or a loved one may have an illness or disease, please seek help from a qualified medical professional. Also, I am in no way affiliated with or receiving any compensation from any of the doctors or website owners mentioned or linked to in this post. These are merely professionals and/or websites that I personally found interesting, informative, and/or helpful.
Can Someone Tell Me What Just Happened?
I’d always taken my health and figure for granted. But shortly after my thirtieth birthday, I suddenly began putting on weight. Conventional “wisdom” tells us that after age 30, our metabolism slows down and weight gain becomes inevitable, particularly for women. That it’s just “natural.”
Hogwash. Tell that to the many slender men and women out there who are over 30, who do not regularly exercise or go on diets. True, once we hit mid-life (and 30 is hardly mid-life!), the metabolism can and often does slow down some.
But in a body that’s functioning normally, even if it is aging a bit, a slower metabolism simply means that the person may have to work a bit harder to keep the weight off. And it can be done without exercising to exhaustion and starving oneself.
Besides, I wasn’t exactly an old geezer at 30! Yet now, it seemed that life was sadistically writing a new chapter of my life, and calling it “Mystery Illness.”
The Sick Story Begins
I had always been slender and never had trouble keeping weight off, except of course while pregnant. After my babies were born, losing the weight wasn’t that difficult — all I did was cut back on portions without changing what I ate. But suddenly this changed, and changed fast. At first, I thought it was nothing more than a bit of “over 30 metabolism slowdown,” buying into the baloney and swallowing it whole, since that’s what everyone kept telling me. I immediately did what worked after having babies — cut down on how much I ate.
The weight continued to creep up. I decided that since I hadn’t regularly exercised in the last year or so, I’d best get back into it, sure that the combination of portion control and exercise would quickly do the trick. I started with walking. Nothing. I added aerobics (those were the pre-Zumba days). Nope. I joined a gym and worked out six days a week.
And kept gaining weight.
I cut way back on the calories and fat (we’re talking pre-keto days), and started cycling and mountain biking. All that did was exhaust me and make me feel worse. I even bought and faithfully used a Nordic Track ski machine. Nada. I also began to ache, even when not exercising. But I wasn’t giving up.
The weight continued to climb.
By this time, I was also feeling very tired no matter how long or how well I slept. My hair began to fall out. I learned that these and other symptoms I was having were classic for hypothyroidism.
So this is why I’m sick! Finally, I had an answer. And there was a simple, successful treatment for it!
But it was not to be. Being uninsured, I was seeing a Nurse Practitioner at our local low-cost clinic. When the results came back positive for hypothyroidism, another NP looked at them and convinced her that since I was taking the birth control pill, the results were a false positive.
I was never given medication, despite the fact that I had almost every symptom to go along with the test results. I was, however, diagnosed with fibromyalgia.
I Just Want to Know! Why am I Sick?
Next came symptoms that I now know to be those of IBS, along with terrible heart palpitations, yet the ekg’s were always “pretty much normal.” The local hospital sent me to a cardiologist at a large, reputable hospital in Seattle. She said my heart was fine.
I asked her about the weight that continued to creep up despite nearly every diet and exercise program under the sun and pointed out the thyroid test results. She simply parroted the ND who said that the birth control pill could cause a false positive on the test, and went on to lecture me on the “inevitability” of all these things happening because I had now passed that magical number of 30.
At first, I was stunned. Then angry, and determined to get to the bottom of it, come hell or high water.
The years went by, and I doggedly continued to diet and exercise until I was blue in the face. I had success for awhile while using a natural supplement to speed up the metabolism, over the next two years very slowly losing almost all the 35 or 40 pounds I’d gained, and I felt more energetic.
The directions on the bottle said not to take it for more than three months. In my desperation, I took it for over two years. About two years after starting on it, it stopped working for me, and the weight began to creep up again, with the side effect of having burned out my adrenal glands (hence the warning on the label). Perfect. I was so tired. It got to the point where not only could I not work anymore, but most days all I could do was lie on the couch. Some life.
A New Approach
Finally fed up with boneheaded doctors who insisted nothing was wrong with me, I went to a Naturopath. The IBS-type pain had gone away on its own, but other than that, I continued to worsen. I had horrible, wild mood swings, and my energy level continued to decline.
The first thing my new doctor did was check my blood and found that I had pernicious anemia. Then she checked my stomach acid production and found that I had almost none, despite my occasional acid reflux.
She also suspected celiac or at least gluten intolerance, so she put me on a gluten-free diet for a month to test the theory. For the mood swings and general health, she put me on large doses of cod liver oil and fish oil.
I had to take HCl pills with my meals so I could digest food, and sublingual B12 drops, since the pernicious anemia pointed to my being unable to absorb B12 from my food (she wanted me to give myself B12 shots, but I refused!). The heart palpitations went away.
After about three months, the mood swings began to lessen. In another month or so, I began to feel more energetic. My doctor also put me on natural thyroid medication, and I began to lose weight, without dieting or exercise, since I had been too exhausted to work out. I was on the path to recovery!
Eventually, I was able to start working out again. But then something new came up. After a workout, I felt extremely weak and shaky, so she tested my amino acids. It turned out that I was low in seven different non-essential aminos. These are the kind you don’t get from food, as the body produces them.
But for some reason, my body wasn’t. The doctor put me on an amino acid blend and the problem went away. But wouldn’t you know it, something else cropped up — of course! The thyroid meds stopped working. The weight loss now reversed itself, no matter what workouts I did or what I ate. It got to the point where she sort of threw up her hands and said she didn’t know what to do anymore.
And a New Doctor
I found another ND.
This one tested me for heavy metals and found that I was quite high in lead and mercury, and off the charts in tungsten, of all things. She gave me stuff to detox. I got better after a while and began digging out the large boulders in our yard, who were living exactly where I wanted my new vegetable garden.
It was hard work, and to make it even more difficult, I added landscaping to the agenda. There were times I would come in from one of these yard marathons feeling very weak, even though I was taking the amino blend my body needed. My arms and legs also felt — I don’t know how to describe it — just weird.
Definitely not right. But I wrote it off to overwork, and indeed after resting and then a good night’s sleep, I was fine the next day. Once I had the garden in and stopped pushing my body so hard, it all went away.
We bought laying hens and it seemed that between the supplements, exercise, homegrown organic produce and eggs, maybe I would finally be on my way to better health.
And it All Goes to Hell in a Handbasket
Then the following spring, my husband and I were out raking the garden and preparing the beds for planting. I felt fine.
Until I started raking. The work was light and easy, yet almost as soon as I began, I felt so tired. I could hardly rake. My husband, ever the comedian, looked at the pathetic row I was working on and commented that the chickens could have done a better job, then suggested I go sit in the sunshine while he finished up.
As I lay back in the lawn chair, the sun felt so good, yet my body felt so… wrong. I had that weak, wobbly, weird feeling again, and spent the remainder of the day just resting.
That night my husband and I sat out on the front porch, talking and laughing at the cats as they chased bugs in the yard, performing outrageous aerial stunts as only cats can do. Being spring in the Northwest, it was pretty chilly though, so I thought a nice hot bath would be just the thing.
But as I got up to go into the house, my legs suddenly refused to work correctly. They were weak, and walking was difficult. What the heck? I staggered into the bathroom, drew the bath and relaxed into the hot water bliss, sure that it would help.
When I got out of the tub about 30 minutes later my legs were worse and continued to worsen until, by the time I was dry and had my bathrobe on, I could no longer walk at all without my husband’s help. A quiet dread began to creep over me as an ugly acronym began to cycle through my exhausted mind: MS.
I knew a woman at church who had MS, so the next day I called and talked to her about my symptoms. She said that every one of them were exactly the ones she gets, and what she goes through whenever she overworks herself, lies in the sun, or stays in a hot bath or the hot tub for more than 15 minutes.
With little money and no insurance, I decided on the “wait and see” approach, and within a week my symptoms were gone.
The next year, I was still struggling with my health, although there were no more strange MS-type episodes. My doctor began to suspect celiac disease. I still didn’t have insurance and couldn’t afford to get tested for celiac, so she had me eliminate gluten for one month.
When I had done that with the other doctor a few years before, I didn’t notice a difference. This time the difference was huge. I pointed out that even so, without the biopsy test, I didn’t know if I had celiac or gluten intolerance and her reply was, “So what? Does it really matter? Either way, you should not be eating gluten.”
Thus began months of educating myself and learning how to bake all over again, as baking gluten-free is a completely different ball of wax from conventional baking, and at that time, gluten-free goods were hard to find in my little town.
Health and Energy! A Funny Thing Happened on the Way to Health and Energy
However, gluten-free bread and I soon separated, as I decided to try one more diet. I went on the Atkins diet, and finally, the weight began to come off, albeit very slowly. I started feeling more energetic and again took up mountain biking in addition to my weight training.
As the months went by, I began to feel better and better. At last, between the detoxing, supplements, going gluten-free, and everything else I’d been doing, it seemed that the years of illness were behind me. I felt amazing, with so much energy that I was practically bouncing off the walls. I wanted to go mountain biking every day. I had never felt so good in all my life.
Then one day while I was stopped at a crosswalk, my car was hit from behind.
Normally, this wouldn’t have meant months of therapy, but I had already been the unfortunate recipient of at least seven other rear-end collisions, plus a couple of head-ons and various other fender-benders over the last twenty-five years. And no, none of them my fault!
All those injuries added up, and this “minor” one sent my body over the edge. I started going to my chiropractor several times a week, plus got weekly massages, and at first, it seemed like I was healing fast. After a few months, my chiropractor said I could start mountain biking again, provided it didn’t cause my neck any pain. I tried a short, easy trail ride, and I was fine.
Until the next day.
I woke up in the worst pain of my life, not counting labor pains. And it was quite close to that. I had a herniated disc. The pain was so severe and despite treatment, lasted so long, it was months before I could work out again.
When at last I could work out, I could no longer go mountain biking, as my neck was just too fragile and, as I found out later, had absolutely no curve to it. Which meant it was useless as a shock absorber.
And besides, someone had stolen my bike.
Just When Things Couldn’t Get Any Worse…
My vision was worsening. It had been bad all my life, my sight growing dimmer each year until my parents thought I would go blind, but eventually, in my early twenties it leveled off. Since I was 13 years old, I’d worn contact lenses, but by the time my vision stabilized, in order to get 20/20 vision, I had to wear contacts and glasses at the same time.
But now, it had started worsening again. My optometrist tried to convince me to get Refractive Lens Exchange, as my astigmatism was so bad, they couldn’t do Lasik. I refused, sickened at the thought of a surgeon carving the lenses out of my eyes and plopping in donor lenses in their place. But the next year, my eyes had worsened to the point that even with glasses and the strongest contacts made, I no longer had 20/20 vision.
I agreed to the surgery.
They did one eye at a time. I was sent home with Prednisolone steroid drops to put in my eyes for a month while awaiting the time to have my other eye done. And… wait for it… there was a weird complication! Of course, right?
I felt drugged. So drugged in fact, I could barely keep my eyes open, could barely walk from one end of the house to the other — and we were living in an 800 square foot house! The only thing different that I was putting into my body was the eye drops.
My theory was that it had to be that the drug was getting into my body via the tear ducts, and I must be extremely sensitive to it. I called the surgeon’s office and was told to come in. It turned out my theory was correct.
After meeting with an ophthalmologist, he gave me his diagnosis: I was a “steroid responder” which I suppose in plain English means, “Your body is extremely sensitive to steroids and they drug the hell out of you.”
He showed me how to use my fingers to block off my tear ducts so the medication wouldn’t get into my bloodstream. This helped some, but even so, a tiny amount was finding its way in, and I spent the next two months in a drugged stupor, as I went through the same thing with the other eye.
Back to Square One — WHY am I Sick?
After that, my health once again took a lovely swan dive. Or maybe it was more of a belly flop.
The weight I’d lost eventually returned, plus more, again despite diet, exercise, and thyroid medication. The fibromyalgia grew worse. As I wrote in this earlier post, about four months after my dad passed away, my husband and I moved next door to my mom to help with her care.
We were supposed to be moving into my grandparent’s old farmhouse, but before Dad passed, they had been previously renting it out. Between Dad being unable to do much to keep the place up, the 1930’s wiring, and the damage the tenants inflicted upon it, the house needed a remodel. The work hadn’t yet begun, but we had friends who would be renting our house and needed to move in immediately.
So, on the creepily auspicious day of October 31 of that year, we put our stuff in storage and parked our 25-foot travel trailer in the driveway, where we lived until the work — much of what we did ourselves — was done in early February. I grew more and more sluggish and sick.
One night I was awakened by a terrible pain in my lower leg. I got out of bed and walked around, and even tried rubbing my leg, but nothing helped. Another nasty acronym popped into my mind, much like when I had the MS-type symptoms, only this acronym was DVT — Deep Vein Thrombosis. Blood clot.
I knew I should have my husband take me to the ER. But he was recently out of work, and I’d been too sick to work for quite some time. At the moment we had no income. How were we supposed to pay a hospital bill?
Besides, at this point, I was so sick of the mess my health and life had become, and asking, “why am I sick?” that I didn’t much care anymore.
I decided that if it was a DVT, either I would survive or not. And if not, I knew that heaven awaited me when I exited this life and that there was no comparison between the awesome life there and the nightmare I was living here. Even as I prayed for healing of the clot if there was one, I told the Lord all of this and ended with a simple, “Nevertheless, not my will but Yours be done.”
Then I went back to bed.
I awoke to the dreary gray morning in my bed in the damp, cold trailer. Definitely not heaven. But hey, no more leg pain, either.