A Ray Of Hope?

"I see growth!"  That was the dermatologist's first statement to me after inspecting my scalp.  I felt relief, I felt tears of joy, I felt hopeful.  "But (and there always has to be a but, right?) it's not as much growth as I was hoping for."  Still, I had the "growth" statement ringing in my ears so I wasn't as concerned with the rest.  The doctor made the decision to switch my steroid scalp treatment to an even stronger steroid treatment in the hopes she would see more hair growth in the next 2 months or we will be forced to search for new options-options with more risks and options I'm not sure I'm ready for just yet...It has been 1 week since I've started the new steroid treatment and, unfortunately, I'm seeing more hair loss instead of hair gain.  This new steroid, thankfully, isn't peeling my scalp the way the other one did, but it also isn't doing squat (that I'm able to notice).  Yesterday I felt myself falling apart as I was pulling hair off of my shoulders and arms-and counting them-by the dozens.  My hopefulness and happiness was downgraded to angry and helpless.  I forced myself to put on my happy face, pretend like nothing was wrong and enjoy some time out with my girlfriends.  I'm trying to cherish these times out with friends because I don't know if I'll have the courage to continue time out with friends once the truth is revealed.  I can't help but wonder how much time I have left to look normal, to feel somewhat pretty and to feel good about myself?  How much more time do I have to pull this 'lie' off without others noticing before I'm forced to hide away and never be seen or heard from again?  I feel my time running out and I feel the panic inside me.  It's not actual life or death, but it feels like the death of the REAL me is coming faster than I can prepare myself.  To add insult to injury, my blood pressure has hit an ultimate low out of nowhere (which means the Spiro option may be off the table-still unsure) and my OB is now also convinced something is seriously wrong with my hormones.  I won't go into detail, but I will be going into the OB office to have a bunch of tests done in the next week...the good news is these tests could possibly reveal some reason for my hair loss that hasn't yet been detected, but a ray of hope isn't worth much to me at this point.      

Ups and DOWN, DOWN, DOWNS

     I have put on my best 'being patient and brave' face for the past month.  I was even downright optimistic for a while.  The shedding continued, but then something crazy happened-while my hair was on a "break" from the steroids I made another hair appointment with a new stylist, who also happens to be my cousin who owns her own Salon.   I explained to her my situation (so she is now the 3rd person who knows) and explained to her that my dermatologist encouraged I continued to have my hair colored as a way to make me feel good about myself still.  For the first time in my life I hated having my hair done because I was fearful the entire time.  Even though Cousin K knew of the situation I wasn't sure if she had informed the others working in the salon and what their reaction would be at the girl with the shedding head of hair.  However, I left feeling good about myself and for a week my shedding stopped completely-I even forgot about it.  I thought, 'this is what I've been waiting for...this is why I had to be patient'.  But with the restart of the steroids, after 2 days, the shed continued.  Not only did the shed continue, but this round of treatments my scalp begun to shed as well.  I was picking off pieces of dead scalp!!  I had a little dandruffish issue after my first round of steroids and, after talking to the doctor, was told to ask my stylist, Cousin K, for some anti-dandruff shampoo that wouldn't strip my haircolor.  I was using the shampoo, but my hair and scalp were not cooperating!  At this point, 11 days into my second round of steroid treatment, I stopped the treatment (without consulting the doctor since I'm a little angry with her at the recent turn of events).  I expected the hair to stop falling, like last time, but this time around has been nothing but DRAMA!  My floors, my hairbrushes, the shower floor, the hair on my clothes- I'm having a very low moment.  The miracle cream that was going to save my hair seems to be drying it out and killing it more-or maybe that's my imagination?  I'm not even sure anymore.  I know for a fact that the hair is still falling and I know for a fact that new hair growth is not in the cards with this steroid stuff.  

Miracle Cream that isn't so miraculous

This is just a few days after cleaning out my brush- I didn't even know I had this much hair on my head

And the dreaded floor I'm forced to look at after each hair drying session.   The dermatologist told me NEVER to look at the floor after drying my hair but how can I avoid this disaster surrounding my feet?

I still try to believe that someday I will be able to face this without fear or tears, but this month has been a downer and I'm trying to embrace the fact that any beauty I possessed has slipped away, to the bathroom floor, with my hair.  

Counting Hairs

So my scalp is currently on a "break" from the steroid cream, this is how we're supposed to wake-up those sleepy follicles (I think) and then restart the steroid cream in about 12 days.  The last day of using steroid cream, before the break, I panicked and called the doctor to inform her that the cream was not working, my hair was still falling out and I need HELP!  Her advice was to be patient (this woman clearly does not know me very well at all yet) and she informed me that we had to give the scalp at least 1 month before results are even a little noticeable.  So now I wait, again-ugh!  This morning was a BAD hair loss morning.  Like horror movie, hair-falling-out bad!  Unfortunately I think I've developed an unhealthy habit of counting hairs when they fall out as I shampoo, as I condition, as I dry my hair and style it-I try to count every single hair that has given up on me and fled the scene to make sure I don't hit my 150 quota of hair loss for the day (this is what I'm told is normal hair loss and this, I'm sure, I am WAY over everyday).  Dr. J would call my counting of hairs a very creative way to worry about something that's out of my control, he always refers to me as one of his most creative patients- I'm not sure if this is an insult or a compliment, but I like to think of it as a positive thing (minus the fact that it has landed me in more therapy sessions and my continuation of anxiety meds.-but I think that this reflects on his failure to fix me rather than my failure to come to terms with my issues so not really my fault there).  Anyway, I've come to love the thick, fabric headbands-these are my saving grace on a day like today.  I can't see scalp, my hair looks good and I'm momentarily able to trick my self-esteem into rising an inch off the rock bottom ground.  I still haven't had the courage to tell my friends what is going on and I think that, in part, is making me a little miserable-trying to hide my hair flaws instead of being able to embrace them and not care.  If this steroid cream fails me though, I see few options left before the truth physically reveals itself before I can...so I am trying to find my patience and wait this out a little longer until I'm forced to come clean.  As for now, thick cloth headbands and wishful thinking and trying to find my smile instead of letting this consume me.    

Bad Hair Day

For those battling hair loss the phrase "Bad Hair Day" takes on an entirely different meaning.  I can't tell you how annoying it is to hear a friend (with a full head of hair) complain about a bad hair day.  Their hair is too frizzy, too flat, too curly, too long, too short, needs to be colored, etc...but regardless of their hair woes I bet they don't spend 45 minutes in front of the mirror EVERY SINGLE MORNING trying to hide bald or thinning spots.  Trying to squeeze an ounce of volume out of hair that needs CPR and trying (and failing) to make the hair non-see thru.  Now that's a bad hair day and that is how I spend everyday.  

     Yesterday I literally could not look at myself in the mirror any longer, even passing by a mirror made me sick to my stomach so I opted for the do-rag look (a stylish Coach do-rag, whatever works right?) but a do-rag, nonetheless.  I was trying out the look as a- just in case this becomes my forever look- type experiment.  My kids were curious, but quickly got over seeing me with a scarf around my head and moved on...my husband was a different story.  He scoffed at first, telling me I was jumping to extreme measures.  Then he became frustrated and told me I was just giving up and giving in, he called this being negative about my situation.  Truth was, in my mind, this was me embracing the hair loss and trying to be positive.  I was somewhat facing a very real and possibly soon-to-be reality and I was relieved not to see my hair or feel the shedding all day long.  It was a bit of a much needed break.  This break, however, opened my eyes to something else though.  My husband, who is trying to be supportive of this thing that has consumed my our lives, is just as scared as I am.  What would it be like to have a bald wife?  Would he be able to cope if it came to that?  

     Needless to say I was expecting a miraculous turn around with the Steroid cream on my head and the Biotin pills, I was overly optimistic and now my optimism is turning into gloom and doom.  This is not the end of my battle, but the beginning sure does suck!   

The Beginning...

I'm a 36 year old woman  girl in the prime of my life, the very last thing I ever expected to have to worry about or experience at this stage in my life is hair loss.  And yet there it was, like a bad dream- a nightmare I expected to wake up from at any moment, but 6 months later and the nightmare is still going.  
     How it began?  Well I decided to lose a little weight, after my 3rd (and final) child was nearly 3 years old I figured it was time to stop blaming baby weight for the extra pounds and get myself working out again.  I started slow, with just walking and changing up my diet a little (cutting out the massive amounts of chocolate I had been allowing myself to consume each day) and before I knew it, I was seeing results.  My pants were loose, the numbers on the scale were reversing and I was SUCH a happy girl!  Instead of sticking to my routine I decided to kick it up a notch...I increased the workouts to include aerobics, longer walks and consuming fewer calories.  The weight was falling off at incredible speed, motivating me even more.  The workouts initially were recommended by a doctor after suffering from anxiety disorder for the past 15 years, which eventually led to heart palpitations (landing me in the hospital 6 times in one year) and had me, reluctantly but eventually, giving in to seeing a psychiatrist to "deal" with my issues.  Dr. J (my psychiatrist for the past year) encouraged the workouts as a way to work off stress and anxiety, but soon urged me to slow down after seeing the quick progression of a 25 pound weight loss in 3 months (Note: I was not overweight to begin with so this was a bit of a big deal).  After 3 months of working out I began to notice my long hair thinning, the ponytails were becoming smaller and smaller and my primary doctor and psychiatrist became concerned.  I added more calories and fat to my diet, I added vitamins and I cut back on the workouts, but the weight didn't budge and the hair continued to thin.  The doctor ordered a slew of blood tests to rule out something serious: tests on my liver, thyroid, iron levels, sugar levels and even cholesterol all came back completely normal.  To be honest, I was hoping something was wrong, then I would have an answer.  It was time to admit that my hair was just falling out yet the doctor wasn't concerned, the psychiatrist wasn't concerned and I was left to live in my personal little hell all alone.  
     I started my research on hair loss and came up pretty short on advice or help.  There were so many unknowns and so few people talking about it, was I really going through this all alone??  Eventually I realized (through research) I needed a dermatologist-except this time I was looking for a female doctor.  Someone who could at least empathize what it might be like for a woman girl suffering through hair loss.  I was on a 3 month waiting list to meet with the "BEST" doctor (as claimed by a magazine) in my city, so now I was forced to wait it out and worry.  Dr. J wanted to increase my anxiety meds, but I resisted so he advised me to find a good wig shop or some cute scarves...is this his way of telling me to give up?  While that's an option down the road, I'm not about to throw in the towel just yet.  I was pissed with the lack of compassion or understanding I was getting, but I was dealing with older males who had NO idea!!  I just wanted someone to listen but I was afraid to tell anyone (with the exception of doctors) for fear of what others would think, how they would judge me or if I'd become less of a woman in their eyes.  I, instead, went to my stylist and had my hair chopped off up to my chin.  I don't know why I thought I would feel better about my hair by having it cut and colored more of a scalp-like color to camouflage any spots beginning to show through-but this seemed to anger the hair and the problem intensified.  This is the time I gave in and had to admit my hair loss aloud to my husband and my Mom.  Neither of them had noticed and both were supportive trying to assure me that things could surely be worse-it was just hair after all, right?  On one hand, I realize I should be thankful that it's only hair loss but on the other hand, I DON'T WANT TO LOSE MY HAIR!  
     I made another appointment with a light-laser hair specialist and had a meeting in which I was told I was a strong candidate for laser hair therapy, HOWEVER, I have to take special pills (supposedly pills that halt the DHT production), special shampoo, conditioner, scalp oil, etc. and I have to continue the therapy sessions and the use of these products forever!!!  The cost?  $3,500 for 1 year!  But I left feeling hopeful at least.  Someone had a solution, someone had compassion and someone was going to help me, but the reality of the cost eventually set in and I knew how impractical this solution was-especially with 3 kids who need college funds.  
     And so yesterday I FINALLY met with the dermatologist (after calling 3 times and begging them to bump me up-a spot eventually opened).  I was diagnosed as having 2 conditions: telogen effluvium (working out too much/eating too little resulting in hair loss) which triggered another condition: androgenic alopecia.  My heart sank.  What little information I did know, after doing all my research, I knew this type of alopecia was irreversible and unstoppable.  My hopes are deteriorating, but my new doctor seems optimistic.  So now I'm at the beginning of my hair loss help and starting with the scalp steroid cream at night and 3000 mcg of Biotin a day.  This morning I showered in water and falling hair.  I dried my hair as it rained down my shoulders and, although this is just the beginning, I'm exhausted!  I'm ready to wake up from my nightmare now, I'm ready to start living and stop obsessing about each strand of hair that flutters to the floor and I'm ready to regain some of that self-esteem of mine that has hit rock bottom.  Welcome to the beginning of my journey, and if you're experiencing hair loss as well, then welcome to the beginning of OUR journey- You are not alone!