Medically Induced Hypochondriacal Hysteria?

(I’m not a doctor. These are my experiences, and things that I am learning–as I understand them. I add links that I feel are reputable or scholarly sources. I am not a doctor, use common sense.)
 

During this whole hair loss process I have made it a point to not do too much medical internet research. You know that person that reads a list of symptoms on the internet and becomes convinced they have everything from Alzheimer’s to Zollinger Ellison Syndrome. I am that person.

About three years ago I was at work complaining that my hands were swelling. (Sometimes they’d swell so much that I could hardly make a fist.) One of my co-workers began hollering
that I had lupus, because her sister-in-law has lupus and her hands looked just like mine. So began a month-long medical research campaign, culminating in positively diagnosing myself with lupus. Completely convinced and completely freaked, I went to see Dr. J, my primary care. He ran a blood test and 2 weeks later laughingly announced that I definitely did not have lupus. Then he bitched about my cholesterol levels and sent me home. Little did I understand then that lupus was very difficult to diagnose and you cannot get a diagnosis from one single blood test. Assuming I was a hypochondriac, Dr. J simply dismissed me as a woman, dismissed my fears, and disregarded my symptoms. I felt ridiculous.

Over the last five months I’ve been determined to not let this happen again. Internet research is limited and no self diagnosing. But as it turns out, I don’t need the internet…I have doctors. Doctors who are completely capable of scaring me into complete hypochondriacal hysteria.

My endocrinologist, Dr. R, is telling me I have an autoimmune disease. Dr. R says that I probably have lupus, or possibly RA, Celiac’s, Crohn’s, Addison’s, or Sjogren’s. WHAT?! He’s also still insisting there is a critical issue with my gall bladder. It did, in fact, seem that the pain in my abdomen had gotten worse. I found out my cousin recently had her gall bladder removed. Then I learned that my grandmother began vomiting bile when her gall bladder burst, and she was saved from death only by an emergency surgery and week’s stay in the hospital. Yes, I finally turned to the internet, and of course I have gall bladder disease, it all makes perfect sense now! I had the HIDA scan done and for the next two weeks I walked around with certain death looming over my head as I envisioned a gall bladder explosion of showering green bile and me crumpled on the floor, clutching my gut, saying, “See, I told you I was sick.”

In the meantime, I visited Dr. Q, my new rheumatologist. Over the next 3 visits she ordered x-rays, MRI’s, and extensive blood testing. The good news is, she didn’t see any lung cancer in the chest x-rays. The bad news is, she claims I have rheumatoid arthritis. “But that doesn’t explain the hair loss, right?!” Dr. Q put me on Prednisone for a month.

Lupus is a “multi-system disease” and can take years to actually diagnose. The problem is the symptoms come and go, blood levels change, and it takes time before enough symptoms indicate the presence of a multi-system disease. To further complicate the issue, lupus mimics a slew of other diseases or conditions and there is no single test for it (as Dr. J had led me to believe).

According to the Lupus Research Institute, to help diagnose lupus doctors use past medical history, lab tests, current symptoms, and a list of 11 criteria. A person has to have at least 4 out of the 11. I have 5, possibly 6. And of the 23 symptoms I have 14. I have tested positive for ANA and protein in urine. But my other lab work has been negative. Dr. Q is not definitively saying that I have lupus; she’s saying I’m “on the fence,” I’m “not a clear-cut case,” I could have “a little lupus” with my RA.
A “little lupus?” is that like a “little pregnant?” She referred me to some famous lupus guru at John’s Hopkins. But that doctor won’t see me until there’s an actual diagnosis of lupus first.

Dr. Q doesn’t want to diagnose lupus, but she has prescribed Plaquenil. Hydroxychloroquine, an anti-malarial drug, purportedly wonderful for both RA and lupus. But there are some rather off-putting side effects, one being HAIR LOSS. (Uh, did we forget what started me down this dark path of doctors?) And the scariest side effect? BLINDNESS.

According to my eye doctor, the earlier form of this drug was extremely dangerous but still the danger of this drug is dosage. If the dosage is not correct, you can develop retinal toxicity and damage your retina.  You must have an eye exam every 4 to 6 months while taking this drug. However (COMMA) by the time the damage is detected and the drug is stopped, they can not reverse the damage already done, but they may be able to stop the damage from progressing. I’ll repeat so that it’s clear, “They may be able to stop the damage progression.”

Dr. Q doesn’t want to say lupus, but she’ll jump right in to prescribing the scary lupus drugs as if they were skittles? I agreed to take the steroids for a short period, but I’ll pass on the super scary drugs, for now anyway.

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Promises, Promises

It’s been about five months since I first noticed my hair loss and I still don’t have any real answers. By now I’m pretty fed up with doctors and all this bullshit. I’ve been bouncing between depression, near violent anger, and apathetic defeat. I haven’t felt much like writing about it this, but today I decided to sit down and do it.

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I’d already been through general blood tests ordered by my primary care, and additional blood tests with a pelvic and abdominal ultrasound ordered by my gynecologist when I went to see the endocrinologist for the first time in mid October.“You’re a puzzle,” Dr. R said during the physical exam, as if this would somehow comfort me. All my blood work was normal. Nothing was wrong with my thyroid, hormones, or blood levels. Yet, something was amiss because not only was I losing the hair on my head; Dr. R could see I was losing hair on my arms and legs too.

“You’re a puzzle” he repeated, while poking and prodding at my at my skin, “There should at least be evidence of stubble. You should be able to see hair under the skin, even if you had just shaved.”

Actually it had been about three weeks since I’d last shaved. I’d been so obsessed with the hair on my head that I hadn’t even noticed my legs or arms. This realization sort of freaked me out. Dr. R was confused; in black and white everything said I was normal, but my body was saying something different. He ordered more blood tests, told me not to worry and come back in a month. He promised he would not let me go bald. Leaving his office I felt a sense of relief. I didn’t really have much faith in his promise, but I felt relieved that I’d found a doctor who was listening and looking for an answer.
That was the last time I felt any relief.

Before I return to Dr. R I have my follow-up GYN appointment with Dr. A where I’m told my hormone levels are fine. Dr. A doesn’t feel the hair loss is being caused by hormones and she doesn’t want to prescribe HRT because taking hormones can actually cause hair loss. She casually reads the ultra sound test results and tells me I have small cysts in both the right and left ovaries, and a uterine fibroid, but she says, “that’s nothing.” She prescribes Lysteda for my Stephen King inspired menstrual cycles, and urges me to get an endometrial ablation. And she’s out the door. (So absolutely zero help or advice for the hair loss or the peri menopause symptoms, and now I’m left with the added confusion about these “nothing cysts and fibroids.”)

Back to Dr. R he again calls me a puzzle and says all the new blood work came back normal. I’m about ready to tell him to shove his puzzle up his ass, but I don’t. I like him for the most part. He mentions autoimmune disease as a possible cause for everything. He does another exam and this time notices that I am not tolerating pressure on my stomach. Yes that hurts, don’t poke me there. He feels something is wrong with my gall bladder. Apparently really wrong, because he keeps repeating it…or maybe this guy has mild Tourette’s and repeats things like puzzle and gall bladder for no reason? I insist that Dr. A just told me that my abdominal ultrasound showed nothing.
“My gall bladder is fine.”
“No it isn’t.”
He calls for a copy of the test results. The test results are normal. “But you still have something wrong with your gall bladder, even if you don’t have gall stones; you could have a sluggish or slow gall bladder you need to have this checked.”

Then he tells me,“Hormonally speaking you are a perfectly healthy woman. You are not even in menopause; you could have a baby if you wanted to.” WHAT? Of course I could have a baby if I wanted to. That was never the question!  I can feel myself begin to scream. “I know I’m not in menopause because I am still having periods. But I also know damn well I’m in peri menopause and it’s making me crazy!” For several years now I’ve been suffering with hot flashes, erratic sleep, mood swings and dry itchy skin. And over the past 18 months I’ve been having trouble with memory and “brain fog” and I’m even “losing my words.” (I get confused and seem to have trouble finding even simple words.) Dr. R tells me that the memory problems are being caused by the stress of my hair loss. I call bullshit and tell him that all of this was happening well before any hair loss.

Now I’m angry, “Three years ago the GYN tested my hormone levels and confirmed I was peri menopausal. And basically what you’re telling me now is that this test three years ago was wrong, but the test today is correct, even though it’s the same FSH test?” (The FSH test is not a reliable test because when you’re in peri menopause your hormones can fluctuate dramatically!) As far as I’m concerned, peri menopause was NEVER in question; the only question was if it was causing the hair loss.

Now I’m in tears. Dr. R looks uncomfortable. I think about the first time I saw him and his promise to not let me go bald. I want to tell him he should never promise something he cannot deliver. But instead I just sit there staring at him, mascara running down my cheeks, and wanting to die. Another doctor who thought they could cure anything but when they can’t find the answer easily they just wash their hands of you. He writes orders for more blood work and again tells me to check my gall bladder. I leave Dr. R’s office knowing that I am just wasting my time. I sit in my car and cry for another 10 minutes before returning to work. I just want to give up. But I’m still hoping that somehow I won’t go bald.

Back to my primary care doctor; ask him about the gall bladder. He tells me nothing is wrong with my gall bladder I have acid reflux, take these pills. My primary care doesn’t think anything is actually wrong with me at all. He tells me that I should just use Rogaine for the hair. “But it’s not just my head” I tell him, “it’s my legs, arms, arm pits, and eye lashes too.”  He seems to ignore that and simply asks, “What are we going to do about your cholesterol?” All he ever cares about is cholesterol. I am tired I have a headache, “I’m sorry but, I really don’t give a shit about my cholesterol right now!” Dr. J tells me to get a HIDA scan (but doesn’t write the order) to check the gall bladder and he prescribes something for acid reflux. That’s the last time I go to this primary care doctor.

And back again to Dr. R where he is still insisting my gall bladder has a problem. He acts like he wants to remove it right there. He shakes his head about my primary care doctor, and recommends a new one. He writes the order for the HIDA scan. Then he drops the bomb that he believes I have an autoimmune disease. Apparently I’ve tested ANA positive. “What does that mean?!” He tells me that it means I have some sort of autoimmune disease, but doesn’t explain any more than that. He rattles off a whole slew of possible diseases, Lupus being one of them. My head begins to spin. Then he says the rheumatologist I’m going to see in two weeks will need to explain. He tells me that being an endocrinologist there is nothing more he can do for me. He wishes me well. And just like that, my relationship with Dr. R is over.

I feel dazed and angry leaving his office. Why in the world would he even bother to mention something like being “ANA positive” or tell me I have “some autoimmune disease” if he wasn’t going to explain it? He’s left me to wait two weeks for an explanation? He should have just kept his damn mouth shut!  I need a drink, and a cigarette. I sort of want to punch something, but as I’m walking out of his office I feel like my knees are going to give out. I went to the doctor with some hair loss issue; positive that I would be told I was losing my hair due to hormones, stress, and poor diet. I truly believed the doctors were going to tell me that the hair loss was due to lifestyle. But going to the doctor has only caused more stress, and now I’m worrying about some “nothing cysts,” a “mystery sluggish gall bladder disease,” some unexplained ANA test, and a million possible autoimmune diseases! If my hair wasn’t falling out from stress before, it sure as shit is now!

I was Driving into Baltimore the Other Day.

I have probably the worst sense of direction than any other living being on this planet.  Years ago my friend Joann used to say you could put me in the parking lot, spin me around 3 times, and I would never find my apartment again. Ever.

GPS devices are a modern-day miracle for people like me. And although I have a (slightly) better sense of direction these days, I still never leave home without my GPS.

A few weeks ago I was on my way to a doctor’s appointment.

I had an idea of  where I was going, but always the faithful following, self-doubter, I went where the GPS told me to go.

I was in the middle of the S. Hanover St. Bridge when I heard my GPS announce,
It wasn’t until several hours later when it occurred to me.
Even my damn GPS is trying to kill me.

Ok, so obviously I’m not an artist, and perhaps I’m getting a little paranoid in my old age.

It’s Not All Vanity

I thought maybe I should document my hair changes. So I took these photos in September:
my thinning hair in september 2011

Maybe those don’t look so bad? But wait, it gets worse!

I feel like I can’t really talk about my hair loss without sounding like a vain, self-absorbed schmuck, but you’re lying if you say you’ve never worried about your appearance. I’m getting older and looking older, that’s just life. Things are wrinkling and sagging, and I’m just not as bright and shiny as I was in my 20’s, or even in my 30’s. In my head I still feel like a 12-year-old, but when I look in the mirror I feel old and unnecessary. Still I could fix my hair up and feel like a beautiful woman. But now even my hair is going! I feel like soon there will be nothing left to make me feel pretty or desirable. I feel so alone.

Yes, men go bald too. But that is socially acceptable. I know men must experience these kinds of feelings when their hair begins to thin. But the difference is male baldness is viewed as “normal” even sexy! As long as men don’t try to do anything crazy like a big comb-over, or a long ponytail in the back, baldness on a man can actually give him more credibility, making him appear distinguished or experienced, which can equal serious sex appeal. It doesn’t work the same for a woman. Baldness is not socially acceptable for women. Hell, growing older is not even socially acceptable for a woman! Picture a 44-year-old woman with a balding head and a 35-year-old woman with thick tempting locks of glorious hair, both at the same job interview. Which one gets the job? Which one is talked about later with snickering revulsion? Be honest.

‘A woman’s hair is her glory.’ Where did that crap come from? Oh yeah, the bible. This is how long this crap has been ingrained in us. But let’s not go down that road today.

Ok, so I already know what it’s like to be a young bald woman. I shaved my head for years…oh hello irony.

In my 20’s I shaved my head my because I liked it, because I was “punk rock,” and because I wanted to make a statement (to myself) that I didn’t need to hide behind hair to make me feel beautiful. And on more than one occasion, complete strangers (usually men) approached me at the bar, the grocery store, the bus stop, anywhere, and offered their unsolicited opinions, “You’re such a pretty girl, why would you do that to your head?” or “You’d be so much prettier if you had hair.” Those comments enraged me when I was young.

Now I’m haunted by them.

When I told my uncle that I was going bald he was pretty insensitive to my pain and anxiety. “Didn’t you used to wear a Sinead O’Connor cut? Don’t worry about your hair. Be happy.” That’s all he said. And as I started telling friends about my hair loss I received similar responses like, “I always thought your bald head was cute.”

Ok, so it’s not like I didn’t know my fashion choices were someday going to come back to bite me in the ass, but when I shaved my head I was 20, thin, and cute. Being bald does not up the cuteness points when you’re 44, wrinkling, and packing on a few extra pounds. At this point in my life, maybe I just want to blend in with “normal” for a change. I know my loved ones are just trying to be helpful and supportive, just like all the people suggesting the “good wigs they have these days.” Have you ever worn a wig? They are hot and itchy, and not really all that pleasant. And who swims in a wig? I picture myself on a gorgeous Hawaiian beach, with my “very good wig” floating out to sea.

I emailed some photos to a couple of my closest friends (see I told you it gets worse).

 One friend said it was hardly noticeable but that I should try Nioxin shampoo, one suggested Rogaine, and one said she liked me bald anyway. But the friend I’d known the longest had perhaps the most honest reaction. She never mentioned the hair loss, but simply suggested I start buying really cute hats, and sent me several links to hat stores. It honestly made me laugh a little, but it also made me sad. And then, of course I got mad about having to go through this at all. I thought about wearing a hat to professional functions, or job interviews. And what happens when someone thinks they’re funny and knocks the hat off my head…and then I have to try to make jokes to ease their discomfort at having been shocked by my bald head. Totally not worth all that trouble!

The day after the first dermatologist told me I was going bald I was almost an hour late to work. I just kept crying as I was trying to get ready. I didn’t think I was ever going to pull myself together. Having a bad hair day will forever mean something else to me now. When I finally got to work, I explained to my 25-year-old co-worker why I was late. She said I was silly and she couldn’t see any bald spots. (I guess I’m learning how to do a decent comb-over now.) I showed her these photos. The look on her face was all shock, and fear, and maybe worst of all…pity.

I got seriously depressed about my hair for a few weeks. I cried and slept a lot. I got angry. But I didn’t believe this was really happening to me (I still don’t believe it). So with hope in my heart, and a cute hat on my head I marched off to the endocrinologist.

[Next post: The Endocrinologist/ Hey what happened to my body hair? And Lupus testing. The fun continues…]

Now, About that Hair Loss

I have very fine hair but I have A LOT of it. Or that is, I used to have a lot of it.

Four months ago I looked in the mirror and to my horror I realized I was going bald. The front of my hair was extremely thin and there was at least one completely bald spot the size of my fingertip. Staring at my reflection I thought, this can’t be real, I need a second opinion. Thrusting my head into my husband’s face I said, “Look! I’m going bald!” He didn’t see it. I told him he was blind, or lying, or both, and I went back to my mirror.

Panic ensues.

Could this be the result of years of bleaching and dyeing, bleaching and dyeing?  No, this has to be caused by hormones, or stress, or maybe even (hopefully) a thyroid problem which could easily be fixed with a pill. Yay! So the next morning I called my family doctor, insisting that I had to get in immediately. “I’m going bald!” I frantically scream into the phone. The receptionist, a woman in her 60’s who dyes the remaining patches of her own hair a dull orange hue, laughs at me and says, “Join the club Sweetie.” I’m still in the shock stage and I’m definitely not ready for bald jokes or clubs. I take a breath before telling this imbecile that, “at 44 years old I do not find it at all funny.” She shuts up and makes the appointment. I make the same frantic call to a dermatologist, and thankfully this time no laughter from the receptionist.

I’m nervous but hopeful waiting for the dermatologist. After she glances at my head for a minute she announces, “You’re going bald.” I stare at her. She continues,

“Alopecia simply means hair loss. The words before or after alopecia describe the type of hair loss. Androgenic alopecia is when you lose the hair in the front, involutional alopecia is a general thinning all over the head. I think you’re almost too old for involutional alopecia, and you’re too young for androgenic, but it seems you might have a combination of both.”

I am still staring at her, my mouth might be hanging open.  She suggests using Rogaine, or styling my hair with curls, “a perm might help, but that could cause damage and breakage, and ultimately more hair loss.” A PERM?! Really? So I give up on the hair for the moment and ask her about the redness on my face. “It’s Rosacea. It’s not bad enough that I’d want to give you any medication for it, but here’s a pamphlet.”

And this is the photo inside that pamphlet:
man with advanced rosacea

Wonderful! So I get to go bald AND have a red bulbous face!!

 

 

 

 

I went home and immediately put myself to bed, burying my red face and my bald head under the covers. When my husband comes home from work I’m sobbing as I tell him that I’m officially going bald. He says, “I’m sorry Cakes” and then adds, “We’re having chicken for dinner” and walks out of the room. Sometimes, he doesn’t deal well with emotional crisis.

Back to the family doctor. All the blood tests he’d ordered came back negative. My thyroid was fine, my hormone levels seemed perfect. I didn’t even appear to be in perimenopause now (more on that in a later post). He couldn’t find anything wrong with me. He recommended an endocrinologist.

But my next appointment was for a different dermatologist. This one actually lifts my hair, looks, combs through it with her fingers, and even pulls on it a few times before announcing, “You’re going bald.” She suggests Rogaine, the men’s formula, because it’s stronger and I’d only have to use it once a day. (Rogaine must be applied to a dry scalp and allowed air dry naturally before you try to style your hair. If I needed to do this in the morning I’d have to get up at 3:00 AM everyday…or look like total crap, making the use of Rogaine a moot point anyway.)

The new dermatologist explained that my Rosacea would only get worse without treatment (ending up like bulbous red face man), so she gave me some face cream. (Metrogel 1% and Finacea 15%) I felt slightly better leaving her office. I told myself at least she seemed to care about me. I went back to work and tried my first attempt at hair loss humor. I’m trying to learn acceptance.

The Base of Madness

So I’m closer to 50 than 40, and a few months ago I felt like I’d woken up and turned a sharp corner. I was hit in the face with the reality of so much wasted potential. I thought about all the things I wanted from life.  But here I am today, my life half over without having accomplished any of what I thought I would by now.  I started looking at my life and thinking, I’m going to die and what have I really done? So many things hadn’t worked out the way I had planned and I began to feel as if my entire life was a complete failure. I know I can’t be the only person in the world that has ever felt this way. This has to be a mid-life crisis, right?

A few days after the, ‘I’ve wasted my life’ epiphany there was another horrible realization. I am going bald. Yes, b-a-l-d, bald. Naturally I’m hoping this is due to stress or a hormone imbalance. The last 2 or 3 months I’ve been running around to doctors for the answer, the cure. But no one seems to have a clue. Most don’t even seem interested. One doctor had the nerve to actually imply that I might not even be in perimenopause yet. BULLSHIT…tell that to my hot flashes, night sweats, and irregular periods from Hell, Motherfucker!  Did I mention my mood swings and irritability? Oh forget it, I will too in about 5 minutes.

I looked in the mirror and thought to myself,
Really? After everything I’ve gone through in my life, I get to have this too?

I get to go bald too? I suddenly felt so much rage I was momentarily blinded.  So, let me get this straight. Before I’m even 10 years old I get a fractured skull and a few concussions, a seizure disorder, several long hospital stays and the once in a lifetime experience of a spinal tap. I survive physical abuse and abandonment from my father, and later physical and sexual abuse from two step-fathers.  I’ve lived with chronic migraines from the age of 12. I moved in and out of 2 foster homes and 1 institution during my teens…I went to seven different high schools. By the time I gave up on high school (cue the Tom Waits song) I was seventeen, pregnant, and living with my drug addicted boyfriend 4 states away from any family I had.  I’ve been diagnosed with PTSD, and have battled depression, anxiety and nightmares. I have arthritis, blown disks in my lower back, and spinal stenosis. I live with chronic pain. I’ve had back and neck surgeries. I’m going out of my mind with perimenopause, I have rosacea and NOW I GET TO GO BALD TOO?!

I’m 44 years old.

Yes, I know there are people dealing with much worse. I’ve had a better life than many people. But that doesn’t make me feel any better. Does that ever make anyone feel any better? I just feel like, couldn’t the gods have left me my damn hair?

I might be feeling too much self-pity, but I’m tired.

I’m a pretty strong woman, and I believe I am really well-adjusted for a child abuse survivor. But, when I had neck surgery at 40 I discovered the damage might have resulted from an injury (child abuse) and I was forced to deal with so many long-buried emotions.  I’ve never really talked about my childhood honestly.  There’s a lot of unresolved anger there. Anger because I’ll never get revenge or justice or even “closure.”  I can’t do anything about that anger, but I can do something about the anger I feel being forced to live with a secret.

As my physical pain gets harder to deal with each day, and as I watch my hair fall out, it gets harder and harder to carry around painful memories of my past. In the end, becomes almost impossible to balance all that against the problems and stress of everyday life. Enter the great therapist search again. Yes, I decided it was time to find someone to talk to about all this god-damned bullshit before I climb a clock tower somewhere.

Why in the world would I start a blog when I feel like I could be falling apart?  I honestly don’t know. I just suddenly felt this over-whelming urge to share my feelings. So many things are happening to me all at once, both physically and emotionally, that I wanted document my journey at this very moment in my life.  So many things from my past and present are colliding. But why such a public forum for such private matters?  I don’t know.  I do worry that this blog might be a very bad idea…
But I know I can’t be alone. And maybe someone will see this and know they are not alone either.

And well, all that being said…I don’t just want to write about medical maladies and sad childhood trauma. I want to write about how I’m experiencing life after 40. There really are other thoughts that go through my head and most of life I find ridiculously funny. I hope I can write some things to make you laugh too. Otherwise, this could be a very short-lived blog.