I feel a rant coming on. A good venting. I’m fairly certain it’s going to be a bona fide diatribe. Oh yeah. You bet your ass! And here it comes.
This one’s been years in the making, and it’s a big one in my books. This turned into a bit more novella and less blog post.
Do not mistake one word of this for whining, a victim story, or a ‘why me?’ saga. However, this is an unedited, uncensored, open and honest reflection of my experience as a relatively well-educated, aware, assertive human being, and my years-long struggle as a proactive participant in my own health care, and, after years of unresolved malaise, my struggle out of the maelstrom we call traditional modern medicine in America.
It’s also a lot of personal information I wouldn’t generally share with people I don’t know intimately. But I’ve really needed to get this off my chest for a long, long, long time.
If however, someone does read this, and by chance, my experience helps someone who has found themselves in a similar situation to take matters into their own hands, and make better decisions with their health than the decisions made for them by someone else who should know better, it’s all been worth it.
Welcome back, old friend…Gesundheit!
About 7 years ago, my childhood allergies reared their ugly head. For a while, I fought the good fight (unsuccessfully) with a variety of over-the-counter meds until I finally waved the white flag and headed to see the allergist.
Diagnosis: Seasonal Allergies
Treatment: Allergy Injections and Prescription Allergy Medication
Outcome: The shots helped, but I still needed the pills. And the Kleenex. And the Visine. But it was an improvement. This went on for 6 years before my allergist decided the shots were no longer beneficial, and we called it a day. Or the better half of a decade.
Why can’t we do better than this? Achoo!
Jumpin’ Eyeballs, Batman!
Meanwhile, back at the office, I was working happily away (Okay, I wasn’t skipping through the halls or anything, but everything was status quo) when my lower, left eyelid started doing a little rhythmic dance. Plink. Plink. *How peculiar!* I rubbed my eye and it stopped. *Hmm* So I started working again, and a few seconds later, it started again. Plink. Plink. Plink. *What the…* More rubbing and away it went. I start working again. Plink. Plink. The damned thing was just toying with me now. Not only was I losing my focus, but it was making me self-conscious.
So I called a friend. “Hi! Janice? Come over and take a look at my eye. Yes, my eye. Just come over here.” After staring into my eyes for an awkward period of time at an uncomfortable range (as in “I never noticed that one large pore on the side of your nose before”), she assured me that no one but me could tell there was anything awry. So I ran off to my next meeting. Meanwhile…Plink. Plink. Plink. And the first words from the guy sitting next to me in conference room? “Hey! What’s up with your eye?” As for Janice? I spent the rest of the meeting writing her ulogy.
This continued on and off for days, and was maddening. My helpful doctor said, “Welcome to your 30’s! This happens to a lot of people. It’s just stress. Are you stressed?” What kind of question is that? Seriously. Who isn’t stressed? I mean, I don’t feel stressed, but let’s face it. In today’s world, stress is the norm. And right now, I’m more stressed than usual because my left eyelid is trying to coax the rest of my facial features into a conga line around my head! Am I stressed? Oy!
Diagnosis: Low-level anxiety.
Treatment: Apply ice to affected eye as needed to relax nerve. Take time to do more relaxing things.
Outcome: I have one copay less money in my bank account, less ice in my freezer, and occasionally I throttle the volume on my iPhone and shake my head to the beat of my throbbing eye. I suppose the exercise is good for me, too.
Do You Scratch an Itch or Itch a Scratch?
Like many people, I get dry skin in the winter. No big deal. But sometimes I get really, really dry skin patches on my arms. So I mentioned it as a side conversation once when I was at the doctor just to make sure it wasn’t anything. Well, I find myself in the dermatologists office.
Did you also know you have vitilago? Vita-what? Vitalago. No. What the hell is that? See these couple spots with no pigment? It’s called vitilago. Some people have it all over. Then there are people like you with a couple inconspicuous spots. It may progress, or this may be all you ever get. It won’t hurt you. It’s just kind of ‘there’. Just be aware of it. I’ll send your doctor a letter.
Diagnosis: Psoriasis, Vitilago
Treatment: Prescription Ointment as needed to affected area
Migraines…Who smelled that coming?
I squint my eyes and turn around slowly, looking for whoever hit me in the head with an ax just over my eye, but I can’t find the perpetrator. To call these ‘headaches’ is akin to filling a swimming pool with ice cream and hot fudge and calling it a sundae. These are the headaches that knock you flat on your ass. And that’s just great, because now my ass hurts, too! It didn’t take me long to call my reliable doc for this one. Absolutely nothing touched the headaches. After an exam and a series of questions, he determines I have atypical migraines.
Atypical, you say? Cool! I’ve always flown in the face of social norms and I wouldn’t have it any other way. So my migraines are atypical because I have every symptom of a migraine imaginable except for a visible aura. These symptoms include a precursor.
Mine is fun. It’s the unmistakable smell of a dirty, wet dog along with the simultaneous sensation that every sinus in my head has just expanded to 200% it’s normal size. Could it be the smell of lilies, or the aroma of fresh baked bread? No. I get the wet dog. Lovely. Well, at least it’s something I can identify. And it’s my cue I have between 8 and 12 hours to get my affairs in order before I’ll be lying in a heap praying for death.
I go home with some pills. Got a headache? Pop a couple of these beauties and your headache will disappear. Thank you! Thank you! Thank you! *pop pop gulp* OK. It was absolutely true. They worked like a charm. They got rid of the headaches. They also, for all intents and purposes, took the world and put it under a slow spinning disco ball with fake fog and reaaally sloooow taaaalllkinnnng and moooovvvviiiinnnnggg peeeople. Funky ass trip! Problem is I sort of have this thing called a day job.
The migraines got so bad, the only way I could stay upright, function a little and remain part of the world everyone else is a part of, was to take a cocktail of narcotics to numb the pain and try to break the cycle of headaches. Fantastic! So was I a junkie now? This was sooo not a solution.
The frequency and intensity of my headaches became so severe, a CT scan was ordered. “I wouldn’t worry about it”, says my comforting medical expert. Why, oh why, oh why do people say these things? And yes, the immediate response is, “Thanks! I wouldn’t worry about it if it were your CT scan, either.” It doesn’t take a rocket scientist to figure out what they’re looking for on a CT scan of your head that might cause massive headaches. It does, however, take a radiologist, who was happy to inform me my scan was textbook normal. But he wasn’t as happy as I was. So, it’s not a tumah. That’s good news, but it didn’t resolve the issue.
Finally, I went off the narcotics and started a daily maintenance medication to control the migraines. Fortunately, I didn’t have to go to rehab to handle the withdrawal. The new med wasn’t a narcotic and I can function normally with it. And it works. I only get a migraine two or three times a year now.
However, the problem isn’t gone. I’ve tried numerous times (under doctor supervision) over the past several years to back off the medication, and the migraines are right there waiting for me with signs, banners and a ticker-tape parade through my skull.
In a Panic
So a bit after the migraines began, I start noticing that I was periodically getting antsy. Now, this wasn’t your average, everyday dear-god-will-this-meeting-never-end kind of antsy. Well, maybe at first. And I really noticed it a lot at work. I was getting really uncomfortable sitting in meetings and would move my legs around a lot, and started playing with things on tables, and tapping my pen on my notebook until I got Stop-It stares from people around me, that kind of thing.
It progressed into strong urges to get up and leave places at inappropriate times. I just felt like I couldn’t be there anymore, and it took all my willpower to stay in a meeting until it was over, completely losing any focus on whatever the meeting was about.
Then it got worse. It turned into more of the If-I-Don’t-Get-Out-Of-Here-Right-Now-I’m-Going-To-Fucking-Scream-Or-Run-Or-Cry-Or-My-Heart-Is-Going-To-Explode kind of thing. I started declining more and more meetings, or opting to teleconference into meetings so I could disappear if I needed to without causing a disturbance.
It didn’t happen all the time, which kind of made it worse, because I couldn’t anticipate it. And let me tell you, when that hits you in the grocery store, and you leave your full cart in the middle of aisle 9B and dart for the exit like you just got toned out for a 3 alarm fire, you know something is amiss. So, back to the examination table I go.
Diagnosis: Generalized Anxiety
Treatment: Anti-anxiety medication
Is the air thick in here, or is it just me?
Being in active treatment for my allergies, I was surprised when I started having regular problems with asthma, which I hadn’t experienced since I was 11? 12? It was long enough ago that I can’t remember.
Off to the allergist again. More medication. Yay! Inhaled corticosteroids and a rescue inhaler. Boy! All these medications sure are fun! And cheap!
Bringin’ Da Pain…Clinically Speaking
I’m putting all of these things in one blurb, although they actually happened over throughout a period of several years, indicating an historical pattern.
Open Floor, Insert Foot: (Circa 2003) I stepped down hard on my left foot and hurt my heel. Actually, I stomped. It’s a stupid story and well, it’s kind of funny. But I do enough embarrassing things, so I’m going to skip it for now. Not a big deal really, except that a month later, I still couldn’t step down on my heel and was walking like I had some physical deformity that I do not, in fact, possess. I decided I’d better see if I’d done something significant to it. I ended up seeing a podiatrist, getting an X-Ray and determining there was nothing wrong with my foot.
Diagnosis: Soft-tissue damage.
Treatment: Alternating heat/ice. Keep elevated when possible. Rest whenever possible.
Outcome: It took over a year before I could put my full weight on my foot and walk normally.
Nurse, Scalpel: (2005) I was experiencing pain in a rather delicate area of my anatomy. After numerous exams, an MRI and a surgical consult, I was on my way to the operating room to have a bundle of ‘offending nerves’ removed from my body. It was a very minor, simple procedure. I may experience some minor discomfort for a day or two, and could plan to go back to work in a week. No problemo. Cut away!
Following the surgery, I was in so much pain I almost went back to the hospital. I contacted the surgeon who essentially told me to butch up, take my lumps and my pain pills and I would be fine. At my follow-up a week later the pain hadn’t improved. The surgeon changed my pain medication and told me to stay out of work until he cleared me to go back.
I contacted regular doctor, who referred me to another surgeon of that specialty to get a second opinion. After telling me pretty much the same thing, he sent me for a follow-up MRI. The MRI came back normal, and he unsympathetically told me there was no pathology. He offered to refer me to the pain clinic to be evaluated to receive maintenance pain injections or medication.
I never went back. I talked to my regular doc about this, and he only said possibly I have a low pain threshold, and maybe I should give the pain clinic some thought. More medication? I don’t think so.
I was out of work for six weeks, and in worse pain than before the surgery that should have relieved the initial pain. It took over a year and a half before I felt a tangible improvement in my condition.
Limp Wristed? (2006) Out of nowhere, I began having this excruciating pain in my wrist whenever I moved it back and forth. Not like a sprain. This pain was so sharp I couldn’t write with it more than to sign my name. I hadn’t lost strength in my hand, but I could only lift things if I pulled them straight up and set them straight down.
I ended up seeing a plastic surgeon who sent me for an MRI. He found several things wrong, including a tear in my short tendon and a bunch of ganglion cysts. However, he didn’t believe any of these were my problem.
First course of action. Several weeks with a wrist brace to support my wrist and immobilize it. Result? Three weeks of agony, and a brace I’ll probably never need for anything else. Second course of action: Cortisone shot to area to help with pain and inflammation. Result? Cortisone shots aren’t as bad as I’ve heard people say they are. But it didn’t do a damned thing for me. Third menu item: Exploratory surgery.
On the day of my surgery, 30 minutes before we have to leave the house for the hospital, my 4 month old son springs a strangulated hernia and we rush him out for emergency surgery.
I deal with my wrist the best I can and will reschedule my surgery for a later date. It’s been over a year since this ordeal started with my wrist. My wrist is starting to feel better. I can use it now, but I have to be careful. And when I’m on the floor with the kids, I can’t crawl around putting my weight that hand, but it’s getting better.
Over these years, I’ve also had a series of labs done to see if my blood might reveal any of the secrets of all my ailments.
Survey says? No. Everything comes back normal. Doc made note of a couple things that appeared a “bit off” and this or that level was a “bit peculiar”, but he told me none of it added up to any diagnosis and nothing indicated any major problem. Congratulations! You’re healthy.
Let’s not be rash…
It was Spring a couple years ago, and I was getting the yard cleaned up from winter. I started feeling itchy. I mostly ignored it, thinking it was just a combination of sweat, dust, maybe seasonal allergies, etc. Then I looked down and saw a red patch on my arm near my elbow. I still ignored it, but started feeling more and more uncomfortable. Finally I had to stop and go inside and clean up. I went to get in the shower and discovered my body was completely covered from my neck to my knees in raised pink bumps that looked like a cross between some horrible attack of sudden cellulite and pink cottage cheese. I’d never seen anything like this.
The shower only made it worse, and I ended up lying in bed with a fan on me, slathered in calamine lotion. Sexy, huh?
From then on, every time I got more than slightly warm, I broke out in a similar rash in varying degrees of severity. I researched rashes, and finally figured I’d managed to give myself a good case of heat rash, which didn’t need medical intervention, but could take 6 to 8 weeks to go away.
So I waited out the majority of the summer before I sought the help of The Doc. Doc sent me to my allergist, who said I should see my dermatologist instead. Dermie told me the root cause of these things are very difficult to determine. But…you got it…he could give me medicine to suppress the hives. And not just one medicine, but he put me on a combination of three very strong antihistimines to keep those little monsters at bay.
The good news? It worked, for the most part. I was able to resume most activities without breaking out, although I still had occasional problems. This was to continue for three months, then we would back off the antihistamines to see if my body had calmed itself down enough to stop being so hypersensitive to whatever was making it freak out.
This never happened. Every time we tried to stop the antihistamines, my skin broke out like felons through an open gate. With a professional shrug of the shoulders, I was advised to stay on the antihistamines and follow-up in three months. And again in another six months. And so on.
I’d had enough and went back to my allergist. I explained to him what was going on and told him this was not an acceptable long term solution and I wanted a second opinion. He absolutely agreed, listened to what I had to say, adjusted my medication so I was on stronger, but less medication and sent me on my way. This is not really what I had in mind by a different solution.
Whatcha gonna do with all that junk in your trunk?
Meanwhile, over the past couple of years, I’ve gained over 40 pounds. My diet hasn’t been a nutritionist’s wet dream, but I’ve observed worse, and it hasn’t changed that drastically, either.
With one notable exception. I have an insatiable sweet tooth that only gets worse as time goes on. Candy of all varieties; chocolate, sugared gum, you name it. And see, when I say sweet tooth, I make it sound like a craving. This is more of a primal, physical need. And if I can’t get to sugar when I need it, get out of my way. If I can’t find candy to eat, I’ve been known to raid the baking cupboard for chocolate chips, and on occasion, granulated sugar from the bowl. Think I brought this up to my doctor in conversation? You betcha!
My waist size has gone up 6 inches and 3 pant sizes. I’ve gone through two absolutely necessary wardrobe changes. My newest fat jeans have become my skinny jeans and I’m on the verge of needing to go shopping again.
I used to think I was thin. My friends thought I was anorexic. ( I wasn’t). My friends now think I look good. It’s because they’re apparently not really good friends who would tell me the truth. (I should give them some credit, though. A mu’umu’u covers a multitude of sins. And since it’s the only thing I can fit into anymore, everyone just thinks I’m eccentric.)
Vanity and clothing expenses aside, does anyone other than me see a problem with this? Apparently not anyone in the medical community. Apparently, though I’ve gained some weight, I’m still within normal range. However, Doc did mention I might not want to put on too much more weight, and should limit my sweets, and focus on eating a well balanced diet.
Thanks! I’ll work on that. You’re a real pal.
Who’s Daddy’s little hypochondriac?
So what do you think? Am I a hypochondriac? I certainly felt like one. I had all these mystery symptoms, an impressive team of doctors and a medicine cabinet that could rival a pharmacy. I’m not open 24 hours a day, but I have considered installing a drive-thru at the back of the house.
I came out and told my doctor this. He assured me I’m not a hypochondriac, but did tell me he thought I still suffered from generalized anxiety and a lower threshold to deal with common problems than some people which made me hypersensitive.
Well, that pretty much sealed the deal for me. I was finished going to the doctor unless I was experiencing acute arterial bleeding from my neck.
It didn’t matter anyway. No one ever found anything wrong, and therefore couldn’t fix it, so it was all just a waste of my time and money. Just as well.
The Devout Parishioner of Saint Mattress
Sweet Mother of God! Is it morning already? Why am I so tired all the time? I’ve tried getting more sleep, less sleep, sleeping at different times, taking a power nap, sleeping pills. This is making me insane.
Like a lot of these things, it started out mild. I had just a generalized lethargic feeling, and never felt I was operating on all cylinders. And periodically I would suddenly have the need to sleep RIGHT NOW, and crash at 6 PM and not wake up mid-morning the next day. For some reason, this seemed to happen on the weekend and we jokingly referred to it as my Saturday Night Coma.
But then my partner and I adopted infant twins. The day our children came home was amazing. I can’t express how much I love my children. But that was pretty much the last straw. Caring for them literally sucked the life out of me. I had all I could do just to get myself pried away from the mattress to take care of them.
This was fair to absolutely no one. It certainly didn’t seem fair to me. But most of all, it wasn’t fair to my kids, who I felt I was cheating out of a father. That said, they were fine. But I was giving them all I had and leaving nothing for myself, which was getting ready to decline into a lose-lose situation.
After an inane speech from the Doc with the offer for pills and a “make time for yourself” speech, I started asking my friends for references to a new doctor.
With glowing references, I set up an extended appointment with my new doctor to go over my entire history and see what her thoughts were, and how we could proceed differently. NewDoc was very nice. She reviewed my chart. She listened to my story. She asked some pertinent-sounding questions. At the end of the appointment, she told me it was difficult being a new parent and very exhausting. She said that I shouldn’t be too hard on myself, and should be sure to take time to relax and enjoy my children. Oh, and to be sure and let her know if I needed any prescriptions refilled. I was stunned.
One day I was getting down on myself for feeling as bad as I feel and not being able to “snap myself out of it”. I was further frustrated that no one seemed to understand what I was going through. I couldn’t be the only person on the planet experiencing this. No single issue I’m experiencing on its own is a huge problem. However, add them up, and it’s debilitating. However, on paper, I’m straight out of the textbooks nearly a model of perfect health.
My myriad of issues wasn’t getting any better. I was on the verge of collapsing from exhaustion and had to figure out something. My doctors weren’t doing it for me. I’ve always been a Google researcher, but I’d had no luck finding much in the way of anything concrete on what ails me. All of my symptoms seemed so vague.
I’d looked for information on fatigue, etc. but never come across anything that really fit me. It was ‘exhaustion’ that opened a world of information I’d never seen before, and I started reading an article on adrenal exhaustion.
I’m not a doctor. And I’d only ever heard vague references to adrenal glands. But I could have written that article, and given seminars to med students about it. The sick thing about it? I was thrilled! Maybe I’m not really crazy after all. And I started doing more research. The more I read, the more I was convinced I’d found the holy grail of Bryanitis.
I looked in many places, but I found some good, basic information at http://thyroid.about.com/cs/endocrinology/a/adrenalfatigue.htm and http://www.drrind.com/scorecardmatrix.asp
What I also found out is that many conventional doctors either dismiss the importance of adrenal function and it’s impact on the body or simply don’t have the education and resources to even diagnose such an issue.
Now, what to do? My partner mentioned to me that we live in a virtual hotbed of alternative medical practitioners. If good doctors are hard to find, how the hell am I supposed to find a reputable holistic practitioner?
Who’da thunk it?
As I conducted further research, I found a large number of business that fall into the realm of holistic medicine. Then I happened on a physician who is board certified in family medicine, holistic medicine, nutrition, homeopathy, and an ongoing list of credentials and experience that could make your head spin. This was where I was making an appointment.
I scheduled the longest available appointment, and I went armed with everything I could find to bring to my appointment. I had my complete medical history, all my old lab reports and all my current complaints.
The doctor told me exactly what I expected to hear. That my adrenal glands were likely failing, and that some other things should be checked out as well.
If I thought I’d had blood drawn in the past, I was mistaken. I had tests done for things I’d never even heard of, and some that had to be sent away to labs half way across the country to be analyzed. I asked the phlebotomist to be kind enough to leave me some blood when she was through.
The doctor started me out on some supplements based on the initial appointment and my old blood labs, and scheduled a follow-up appointment when my blood work came back.
This is what I found out. Adrenal Exhaustion? Let’s describe it as failure. In addition, I have hypothyroid, and a severe Vitamin D deficiency (about 25% of the minimum normal levels). I do actually have enough Vitamin B in my body, but it’s not getting to where it needs to be because of something (My eyes started glazing over at some point in this conversation). Any of these things on their own will cause exhaustion, and a number of the other symptoms I’ve been experiencing.
Oh, and by the way, in addition, I have a never-previously-diagnosed SEVERE allergy to milk, casein (milk protein), and both egg whites and yolks.
With time, and getting my body the things it needs, I should be able to get off from most, if not all the medication I’m taking.
So now I have a diagnosis, a lot of information, a B12 shot, a bag full of dietary supplements, a new diet to follow (no dairy and no eggs) and I head home with mixed emotions of relief and feeling just a bit overwhelmed.
Skeptical, but determined that I’m going to follow this through to see if it works, I go through the house and make an inventory of what we have that I can and can’t eat. It can’t hurt to give this a try. After all, nothing else has worked.
The list of what I can eat is much, much shorter, and I suddenly realize that unless my supplements have enough calories to sustain life, I’m going to starve to death after my body eats through its stores of fat from all the extra weight I’ve put on.
Getting back on track
The grocery store is my new Barnes & Noble, and I peruse labels like it’s the latest bestseller list. I’ve started eating a lot more whole foods, shopping organic and I’ve found substitutions for some of my favorite dairy and egg containing foods.
It’s not been easy. But I also have to admit that it hasn’t been as difficult as I’d imagined it would be. There are some things you simply can’t replace, like Haagen-Dazs. But I’ve found some things I really enjoy. And organic food DOES actually taste so much better than regular food. Especially produce. And chocolate. I’ve discovered nothing in the world compares to dark, organic chocolate.
For the first time in years, I can recognize that I’m slowly gaining more energy. It’s not 100% yet, but I’m gaining all the time. And since I changed what I’m eating, I’ve lost 14 pounds. And I’m not dieting, either. But cutting all milk and egg products out of my diet has made a huge difference in the types of things I’m eating. It just kind of happened.
Who’s your DOCTOR, baby?
We’ve all heard it. What do you call the person who graduated bottom of their class in med school? Doctor. Bah-dum-dum.
For the record, I live in an area that is well-known for its hospitals, doctors and medical care. I have selected my physicians carefully based on their education, experience and references.
So, I began to question my situation. Now that my body is getting back in balance I’m starting to feel that I’ve been cheated by the mainstream medical community. I can’t believe what’s happened to me is an isolated case.
How is it that all of this could have gone undiagnosed for so long?
How is it that I was made to feel like I was a hypochondriac?
How is it that I couldn’t get anyone to give me any answers for years on end?
How is it that I, as a layman, untrained in medicine, ended up finding the answers to my problems that stumped many a doctor and specialist on an internet search engine, armed only with my keyboard and a broadband connection?
How many other people are out there suffering from undiagnosed or misdiagnosed problems and not getting any better because they are simply accepting what their primary care physician is telling them at face value?
How many people don’t feel they have any other options available to them because of limited knowledge, insurance coverage, cost or other factors?
The decision I made to get help outside traditional means has cost a small fortune in out of pocket expenses because only a limited amount of it is covered by my insurance company. However, the money I’ve spent out of pocket in copays, prescriptions, potentially unnecessary surgery and the personal cost in terms of my health and quality of life over the better part of the last decade is far greater than any amount of money I am now investing in doing something sensible, doing something that actually works.
I know there is a place for modern western medicine. I’m not disputing that. However, my issue is that this is the only type of medicine that the vast majority of our country is ever aware of, and if you are lucky enough to have insurance coverage, it is likely all it will cover.
I’ve always believed I was an active participant in my own health care. It appears now that I was active only in that I jumped up and down inside a failing system, flailing my arms and stomping my feet, which got me absolutely nowhere. What I needed to know, and need to continue to learn are that there are many forms of medicine, health and wellness care available, and I need to research all of them on a regular basis to determine my best course of action for my current needs. And that’s a daunting prospect. Even for me.
With my current doctor, who is certified in all of the areas I would generally need a doctor, and works a fluid balance between them, I now feel comfortable that I will be able to work in concert with that practice to get what I need.
But that doesn’t solve the issue. It only makes things better for me. For now. And it makes me angry. Is expressing it going to change anything? No. But I can at least throw my words to the wind. And maybe, just maybe, someone, somewhere is feeling the same way, and won’t feel like they’re the only one sitting around going, “What the fuck?”.
And that’s my rant on modern medicine. This felt good. I think I’m going to go make a
milk shake martini and relax.