Move Over CVS, There is a New Competitor in Town

It is not a shock that I was laid-off due to Covid-19. I am one among thousands who were. This lay-off, though, has led to an interesting learning experience about medical insurance and medication. This will be a two-part blog series as there is a side story that I will twist with humor concerning GoodRx.

I have spoken at great length about my extensive history with mental illness (yes, Stephanie, we know already!). I have been on various medications throughout these last 22 years (I didn’t start meds until I was 18). After two decades, my body said nope, not anymore to the antidepressant, Lexapro. This drug worked so well until it didn’t. I was not sad to see it go. Since I was put on every known SSRI*, my psychiatrist recommended switching to an SNRI*.

So here I am, newly unemployed and feeling highly depressed, inadequate, and self-loathing. I have a telehealth session with my psychiatrist the beginning of May. She sends my scripts to Express Scripts, the online pharmacy that I was using with my now former job. I’m thinking that things will go as normal as the company paid for two months of COBRA*.

Boy was I wrong!

I thought it very funny that I never received a text that the drugs shipped. Of course, because I am now over 40, I did not recognize this until a week and a half later. I am filling my pill container and gasped when I realized I was in dire need of my SNRI, the generic version of Cymbalta. I was beginning to run low on my 100mg lamotrigine as well. The latter helps me with the cyclical nature of my depression (I do not have bipolar disorder, I lack the mania aspect).

“Shit! Shit! Shit!”

Anyone who has ever been on an antidepressant knows that it is really bad to go off of them cold turkey. Depression symptoms can quickly elevate and worsen. You are also at a higher risk of suicide. Now you understand my profanity.

I quickly log on to Express Scripts to see where these prescriptions that my psychiatrist ordered two weeks ago are. What do I see for each and every one of them? CANCELED. Um, what?! I am now panicking. I only have a week left of the Cymbalta. This is not good.

I call Express Scripts.

The nice lady on the phone tells me that she sees the five prescriptions as canceled but cannot tell me why. I explain to her my dire situation. She is of no help. She notices I have a refill left on the lamotrigine 100mg and says she can put that through but because that script technically expired she has to notify my doctor. I explain to her that I really need the Cymbalta more, that I was laid-off, and only have insurance through mid-June. She checks my account and says, it is showing me you have no insurance coverage.

What?! Wait, did I miss something in the awfully confusing COBRA paperwork?! Of course, I did. One needs a lawyer to fully decipher that thing.

I hang up with this ‘delightful’ lady as she works diligently contacting my doctor’s office to fill the expired refill. This is the 3rd full week in May (take note of this date, it is necessary for the end of this post). I need to also mention that my psychiatrist is now out on maternity leave (ugh, I see Murphy’s Law is in play).

As if talking with Express Scripts wasn’t enough, I now decided to contact COBRA. A different ‘delightful’ woman looks into my file and tells me, wait for it, you never elected coverage. You are not insured. What?! The letter I received from my now-defunct job said I was covered for two months! I am so confused and rapidly falling into an anxiety spiral. I am trying to explain this to her and we ultimately go back and forth between “You are not insured. You needed to elect to be covered” and “But my job sent me a letter saying I was insured.” Ultimately, I lost the battle.

Okay, Stephanie, let’s regroup. You are not insured. Your psychiatrist is out on maternity leave. All of your Express Scripts prescriptions have been canceled. And, most importantly, you now have five days left on your antidepressant. FUCK!

I quickly call the doctor’s office and explain to the receptionist what happened. Her voice tells me she isn’t quite convinced of my story. I’m gathering her first instinct is that I am a patient dying to get my hands on some good ‘stuff’. Yes, that is definitely it… Cymbalta, Gabapentin, Lamotrigine, and Trazodone. Those are definitely drugs I can get high off of and sell on the street for some mad dough (note sarcasm, none of them are). I am on the verge of tears about the Cymbalta. She informs me that she will have another doctor send it in. I have her send it to a local grocery store pharmacy where it is cheaper. Remember, not employed, GoodRx to the rescue (or are they?)!

I will avoid telling my twisted tale concerning GoodRx until my next blog post. We will just say that all my prescriptions were filled on time. I now have at home over 120 pills of Trazodone, Lamitrigene 25mg, and Gabapentin. My prescriptions are for 90 days. The pharmacist doesn’t even bother putting my Cymbalta tabs in another bottle. I receive the original bottle the pharmacist received. I am a at around 100 pills for the Lamitrigene 100mg.

So I am well stocked for the next few months.

Then, my husband finally adds my daughter and me to his insurance. I meet with my psychiatrist over the internet once again at the end of July. She already has my new insurance. She automatically sends my prescriptions into CVS. I hadn’t realized she had done this until I received a text from CVS letting me know my prescriptions are ready. I go to the CVS I think they were called in to pick them up. Nope, not that one. They were put into the one near my former employment. Because I know myself, I knew that passing by would be very emotionally triggering for me. I went online and had them mail them to me for free.

So if you are doing the math right, here are the current totals (remember two months have gone by):

  • Cymbalta: Around 120 capsules
  • Lamotrigine 100mg: Around 120 tablets
  • Lamotrigine 25mg: About 320 tablets (I take 2/day and had plenty to start)
  • Trazodone: Around 120 tablets
  • Gabapentin: Around 120 capsules

Too many, right?! Well, remember when I told you to keep the 3rd week in May in mind? The time the ‘delightful’ lady from Express Scripts was going to contact my doctor to fill the expired prescription? Yeah, I almost didn’t either.

Guess what showed up last week… that prescription. Only 3 months late! Add another 90 tablets of Lamotrigine 100mg to my list.

I can now put CVS out of business!


*SSRI is a selective serotonin reuptake inhibitor which increases the amount of serotonin your brain produces. To note, serotonin is mass-produced in your gut but this serotonin does not travel into the brain.

*SNRI is a serotonin-norepinephrine reuptake inhibitor. As you probably has guess this class of drug not only increases your brain serotonin levels but also your norepinephrine levels. Both help you to feel happy.

*COBRA is a confusing and expensive way to continue your health benefits after you have been let-go or fired. Really, don’t use it unless you really need to, and then there are still cheaper options out there.

Thank You!

Call it part of a Depressive’s “12-Step” Program, but I feel the need to say thank you to the people in my life that have contributed to my better health and wellness.  Considering the decades that I’ve struggled, this list can become rather lengthy but I will narrow it down to my latest and greatest (note sarcasm) episode of Major Depressive Disorder.  Some people listed may shock you, but all have helped in bringing the strength trifecta back to me.  I now feel strong.

Thank You To:

My Parents:  You have never given up on me.  Although we all struggled to understand exactly what was going on with me in my teenage years, you never pushed my thoughts and feelings aside.  You never told me to “suck it up”.  You never told me to “just get over it”.  From the beginning you both have sought out ways to get me help starting with group therapy, to Cognitive Behavior Therapy and even medication.  You helped when I was a few states away in college.  You both have cried with me, constantly worried about me but never ever left my side.  I am extremely thankful to have you two as parents as many others do not have such caring and understanding parents in their lives.

My Husband: Oh, what we have been through… first and foremost, thank you for never taking me up on my offer to leave me.  I must of told you dozens of times to go, take Sophia and run.  But you didn’t.  You stayed and took our wedding vows seriously.  You loved me when I was “crazy”.  You sacrificed so much when I was hospitalized.  You never gave up on me.  Although now you are unsure of what to say or do when my illnesses make themselves present, I know you care.  As Bon Jovi said, “Thank you for loving me”.

My Sophia, my baby girl:  How did I get so lucky?!  You are the light in my darkness.  So compassionate, kind and empathetic.  You have never made me feel guilty or unloved by you.  You worry about me to extents you shouldn’t but I appreciate it.  You are always there for a big hug.  Thank you for being  you.

My Therapist:  Hmm… I don’t think I would be here without you.  I came to you in the darkest moments of my life.  Lost and completely hopeless that I would ever recover this time.  CBT therapy wasn’t working this time.  I needed something more.  It was fate that all I did was Google EMDR Therapists and narrow it down to who was more convenient in location.  It just so happens that the most convenient turned out to be my saving grace.  I had huge doubts that EMDR would work.  Highly emotionally draining in the beginning, you helped me to reprocess the loss of Tyler and in turn, the loss of Sophia’s infancy, my Postpartum, loss of more children and even the loss of my former self.  Thank you!

My Friends: From visiting me in the hospital to checking in on my through social media and texts, I am grateful for each and every one of you.

My Gym:  Again, another choice of convenience to work and home, the gym has been a wonderful addition to helping me get strength in all areas of life.  Aside from building up my physical strength (I can barbell squat 135lbs currently!), all the trainers, instructors and the owner have made me feel welcome, like I belong.  I am not just a number lost among many.  It is a close knit family that I am thankful to be a part of.  Thank you!

My Medications:  Although the stubborn weight gain and selective side effects are an annoying pain in my ass, I am completely grateful that they exist.  I used to hate taking these tiny pills to feel ‘normal’ but now I am thankful they help me to feel like myself.  We have a strong bond that will never be broken.

And lastly…

Myself:  I think this was the hardest person to thank.  I spent years hating myself, years internally abusing myself.  I didn’t matter.  I didn’t deserve love.  At points in my life, I thought I didn’t deserve to live.  I have come a long way.  Battling Depression and Anxiety both physically and mentally, sometimes draining myself into complete despair…  I’ve finally learned acceptance and because of this have become kinder to all aspects of myself.  I am now happier and understand I cannot change the past.  I am starting to live in the present, enjoying the little things in life… my daughter’s smile, a chirping bird, pretty flowers.  I want to live.  I want to see what the future brings.  Thank you Stephanie, for learning to live.  You are truly an amazing strong being!

 

Living With Someone Who Is Mentally Ill: Interview with My Husband

I was approached by a friend of mine who offered up the suggestion on doing an interview series with family members on what their thoughts and feelings were concerning my Mental Illnesses.  I have to admit, I had been toying with this idea for a long time and at this request, felt it was the time to actually commit to the series.

Since it is May and Mental Health Awareness Month, I knew that I wanted to publish these now.  As much as we (those of us diagnosed) feel and think about when we are deep in the depths of Depression, Anxiety, Bipolar Disorder, Schizophrenia, Borderline Personality Disorder, etc., what do those close to us feel?  Do they feel as hopeless? Do they feel frustrated with us? Are they so angry they are wondering why they are with us?

I interviewed my husband this past weekend (my daughter and parents interviews will follow).  This is a man who has been with me for almost 22 years, since we were teenagers.  He has witnessed 5 out of my 6 episodes of Major Depressive Disorder.  He has been through my hospitalizations, my self-loathing, my hysterical thoughts.  And he stays.  A lot of what I asked him, I knew the answers to (I mean, hey, we’ve been together for over 2 decades!), but he did shock me with a few.

I present below my interview with my loving husband, Jimmy.

The Interview

Picture it, Master Bedroom, a late Saturday afternoon in May in New England.  I greet my husband and thank him for participating.  He nods.  He is not a wordy person which is shocking by some of his answers:

S. Paige:  What were your 1st thoughts and feelings after witnessing my episode of MDD in college where I slammed doors and pushed you out?

Jimmy:  I felt I had done something wrong to make you feel, like, the way you were feeling.

S. Paige:  Were you angry? Were you upset?

Jimmy: Defeated.

S. Paige:  What made you call my parents then?

Jimmy: I don’t remember doing that.  (He did in fact call my parents and filled them in on what was going on with me.  I received a phone call from my therapist that evening and then the campus psychologist the next day.)

Episode 4: Postpartum Depression & Anxiety

S. Paige: Okay, let’s go to something more recent. What did you think and feel when you got the phone call that I was at the hospital after Sophia was born (for severe postpartum depression & anxiety)?

Jimmy: … I don’t know.  I didn’t know what to think or feel.  I didn’t feel.

S. Paige: Were you worried? Were you wondering what the heck was wrong?

Jimmy: No.  I just thought that is what happened (after childbirth).  You had a hormone crash.  You had baby blues.  I didn’t realize you weren’t sleeping well.  I didn’t realize it was a thing.

S. Paige:  Did you realize I was vomiting all the time?

Jimmy:  No, I knew you were taking Ensure.

S. Paige:  Were you and I living in the same house at that time?!  You went to therapy with me.  You went to the psychiatrist with me.  You weren’t concerned at all?

Jimmy:  I don’t recall going to the therapist.

S. Paige:  This is proving to be a really valuable interview (sarcasm)

Jimmy:  I blocked these bad memories out.

S. Paige:  How were those 12 days when I was in short-term psych (I admitted myself exactly 1 month after our daughter was born)?

Jimmy:  Non stop.  I didn’t have time for, like, myself.  I was always visiting you or taking care of Sophia or with your parents or at work.  I had no time for me.

S. Paige:  Did that strain you?

Jimmy:  I’ll never eat at a KFC ever again.

S. Paige: (perplexed) Why? What does KFC have to do with this?

Jimmy:  Because that is where I would eat from the train station on the way to the hospital.  The KFC on North Street.  And I just can’t eat at a KFC ever again because I link the two together.

S. Paige: So it is a trigger?

Jimmy:  Yes.

S. Paige:  How were you able to continue with that schedule?

Jimmy:  Because I knew it would end eventually.  There was light at the end of the tunnel.  I know you didn’t see the light, but I could.

S. Paige:  I feel guilty for that (putting him in this position).  Do you know that?

Jimmy:  It’s what I am here for.  I’m the husband.

Episode 6: My 2nd Hospitalization / A Next Time?

S. Paige:  How did you feel when I went back to the hospital?

Jimmy:  I had gotten used to it.  It’s just like a part of you.  Every decade or so, you’re going to have to spend a couple of weeks in the hospital.  I don’t know.  I’ve just accepted it.

S. Paige:  Are you okay with that?

Jimmy:  Okay-ish.  I would rather you not have to do that.  But, it is part of who you are.  That every time some major event occurs in your life and for whatever reason you can’t adjust to the change it is always a possibility that you could end up in the hospital for a week or two.

S. Paige:  Do you worry about a next time?

Jimmy:  No.

S. Paige:  Do you think there will be a next time?

Jimmy:  Probably.

S. Paige:  Do you ever fear I won’t recover?

Jimmy:  Depends on your definition of recover.  So like hopped up on mega does of anti-psychotics for your life type never recover?

S. Paige:  Yes.

Jimmy:  Yeah, that’s a concern.

S. Paige:  What would you do?

Jimmy:  I don’t know.  I don’t want to think about it.

S. Paige:  Do you fear I will take my own life?

Jimmy:  No.

S. Paige:  How are you so sure?

Jimmy:  I… don’t know.  I’m not so sure, but I am pretty sure.

Stigma

S. Paige:  How did you feel about having your wife in the psych ward?  Did that seem normal to you?  Seem weird?  Did stigma play into it?

Jimmy:  No.  Because… its… its… maybe for the people of the older generation than us.  I might not tell them directly that my wife is a ‘nut job’ and she’s spent time in the psych ward but people our generation and younger are much more accepting of medication and therapy and needing inpatient stuff but I might not be as open to the older generation.

S. Paige:  Taking the older generation into account, how do you feel when your father says…

Jimmy: (cut me off) He’s an idiot.

S. Paige:  I didn’t even get the question out.

Jimmy:  It doesn’t matter.  But he’s my father and its not like I can say anything bad to him because he’s a Catholic father and because you haven’t grown up in a Catholic family you don’t know.

S. Paige:  No, I don’t know.  But you have a wife and daughter with Mental Illness diagnoses’.

Jimmy:  I’m not going to change him so I just accept the fact that he’s and idiot and ignore him as best as I can.

Our Daughter, Sophia

S. Paige:  As a parent, do you worry that she’ll be like me?

Jimmy:  I worry she is going to be like me.

S. Paige:  Why, what’s wrong with you?

Jimmy:  I’m an antisocial, geeky, anxiety riddled ‘nutto’.

S. Paige:  You do not have a disorder.  You have moments of anxiety.  She has one already.  With teenage years and hormones do you worry she’ll follow in my footsteps?

Jimmy:  No, you’re still alive and you’re 38.  She’ll make it through.  It’s part of who you are, it is part of who she is.  I wouldn’t want to change either of you two.

S. Paige:  Do you think because of what I went through, we’re better equipped to deal with Sophia if she does fall victim to depression?  I know we have definitely done better dealing with her anxiety.

Jimmy:  I just hope we’re not biased.

S. Paige: That concerns me.

Jimmy:  I mean you’re super biased towards never going on medication.

(FYI, I am medicated and fine with it)

S. Paige:  It’s not that I’m biased, it’s just…

Jimmy:  … like it’s a sign you’re headed down that slope.

S. Paige:  Yeah.

Jimmy:  And I’m just like yeah, whatever, if it makes the slope less steep than who cares?!

Changing Me

S. Paige:  Did you ever just want to ‘slap’ the anxiety and depression out of me?

Jimmy:  No.

S. Paige:  Do you wish I didn’t have either one?

Jimmy:  Interesting question.  It’s hard to answer.  Because it’s part of you and I love you.  But would not having it make you better or different?

S. Paige:  Do you think we would have had more children if I didn’t have anxiety & depression?

Jimmy: Yes.

S. Paige:  How do you feel overall with this (pointing to self)?

Jimmy:  It’s interesting.  What’s the point of living life if it isn’t interesting?!

S. Paige:  Why do you stay?  Times I’ve said go, leave me, take Sophia.  I’m a disaster, you deserve more.

Jimmy:  I need you.

 

And lastly…

 

S. Paige:  What would you say to a husband/father who was going through this with his wife or child for the first time?

Jimmy:  Persevere, because there is light at the end of the tunnel and it isn’t an oncoming train.  It is really the end of the tunnel.  It will get better.

When All You Can Do Is Blame Yourself For Your Daughter’s Diagnosis

I tried to hold my tears back as I stared into my daughter’s oceanic blue eyes.  I could feel them welling up, feel the moisture increasing.

Not here, not now, not in public, Stephanie.

But, to be cliché, the dam was about to break.  A tear or two escaped.  My daughter was concerned and relayed this to her father on the phone.  She handed my cellphone back to me and my husband proceeded to ask, “Are you okay?”  No, no I wasn’t okay, but do I tell him that?  The silence was broken as he asked again.  I told him the truth because even if I lied and told him I was okay, he knew I wasn’t.

I am about to cry,” I uttered quietly so the other patrons could not hear me.  My daughter and I were waiting for our dinner order to be ready at our favorite sandwich shop in town.  It was last Friday evening, the start of the weekend, and my husband’s Friday to geek out and play Magic.  He wanted to stay home with me.  I told him no, I didn’t want him to blame me for not being able to play (even though he wouldn’t, it was all in my head).  I told him this knowing full well that I wanted his support but feeling I didn’t deserve it.

Our food order was ready and we went home passing my husband’s car on the way.  When we pulled into the garage, my tears flowed like a high pressure hose.  My daughter wanted to know what was wrong although she could somewhat guess as she has been a witness to me, her mother, for the last eleven years.

“It’s my fault, it’s all my fault.”  My lamentation increasing as these words escaped my mouth.

“What is your fault, Mommy?”

“That you are the way you are.  It is my fault.”

My daughter has been diagnosed with Generalized Anxiety Disorder since she was 6 and has struggled off and on with it over the last 5 years.  This year has been extremely hard on her and because of it, hard on me.  She has been in therapy since the fall and because of some reactions she has had during her anxiety attacks the past month, it has recently been suggested that she get evaluated by a psychiatrist.

When the recommendation was first made to me by her therapist, I have to say I was a bit shocked.  I guess I never thought that her Anxiety warranted a psychiatric evaluation.  After a few hours, I have to admit the stigma against Mental Illness set in; her seeing a psychiatrist would really mark her as someone who is mentally ill.  I hurt for her.  My husband and I discussed the evaluation with her.  She has learned about the stigma, has learned to stand up to it (from her Mom of course).  But even this, having the word “psychiatrist” associated with her name, caused her to want to hide.  She instantly thought she would be medicated.  Eventually, she became okay with the evaluation that is set to be done in another week and a half.

All this got to me.  It pulled at my heart, tore holes, ate away at it.  The biggest fear I had when becoming a parent is that I would pass on my Depression and Anxiety to her and I have.  Her being in therapy never bothered me.  I am a firm believer that most people would benefit from therapy regardless of a Mental Illness diagnosis.  It was the mention of “psychiatrist”.  To me, like my daughter, I associate “psychiatrist” with “medication”.  Throw in the word “evaluation” and I was losing it.  I held back my emotions for the sake of my daughter, but I knew eventually they would become very visible.

I spoke with my therapist about it.  He told me it wasn’t my fault.  I said, “How?  How is it not my fault?!  She suffers the way I do.  I never wanted her to and now she is.  It’s only going to get worse.”  He logically said that this is something I did not give her on purpose.  There was no way of knowing whether she would be Mentally Ill or not.

“But I gave it to her.  It is my genetics that did this.  She is becoming me.”

No matter how many people tell me it is not my fault (heck, even my intelligent daughter tells me), I still cannot stop blaming myself.  I can’t kick this feeling.  She is already experiencing more than I ever did at her age.  I mean, I wasn’t even diagnosed until 14 and here she is at 11 with 5 years of Anxiety under belt.  Maybe I am transferring myself onto her to an extent, already predicting more suffering in her future getting worse and worse as she ages like it has for me.  No parent wants to see their child endure pain and illness.  In this case, I didn’t want her to endure the thoughts that I have felt, the fear I have felt, the hopelessness that I have felt.  I didn’t want her holding a case cutter to her wrist.  I didn’t want her desiring to stick something in her brain to end the constant negative thinking.

And yet it is beginning.  The fear is already inside of her.  And it was all my fault.  How could I, someone who has battled Depression and Anxiety for over 24 years, not feel blame?  More importantly, how can I stop feeling blame?

When You Fear Yourself

There were brief moments, tiny myopic moments, seconds that I could see my reality. In these moments of lucidity, I became scared.  I was frightened at what I was becoming and how fast my body and brain were transforming.  Fortunately (or unfortunately) these moments of clarity were scarce because my body was failing me so rapidly, my cognizance was minimal.

 

I was healthy. Off medication for a few years. Actively working out at least four times a week.  I was confident, loved how I looked and felt, a rare time frame in my life where I wasn’t self-loathing and highly pessimistic. It was a euphoric high that I never imagined I would plummet out of.  I was wrong.  Oh, so wrong.

 

The severe Anxiety hit first. I couldn’t sleep and I tried, I tried so hard.  Listening to my Therapist, I got up, left my bedroom, and went downstairs to watch TV.  I thought watching TV in the dark with the comfort of my cat lying in the crook of my body on the loveseat would do the trick.  I would be able to return to my bed and the act of slumber.

 

But, the sounds came next. My foster son would cough, my daughter would cough and it would echo through the house.  A neighbor’s car alarm would go off.  The heat, even the sound of the damn heat turning on would shatter any hopes of sleep.  Most nights, I gave up around 3am and just cried quietly.

 

It didn’t end there though. The mornings brought me Panic Attacks.  I would be short of breath and my heart would be beating so fast that it felt as if I just finished a marathon in record time.  Nausea would riddle my body and I would run to the bathroom dry-heaving.

 

Then, I started to become delusional, spewing forth ridiculous ideas that my children would be taken away from me (which in the end our foster son was removed from our house), that my in-laws would take me to court to obtain sole custody of my daughter, that I was going to die. These thoughts were constantly in my head and I couldn’t keep them there.  They came out of my mouth easily and I believed every one of them.

 

Finally, Depression and Grief set in, a split second after our foster son was removed. I was experiencing a death not only at losing this little boy who I still think about every day, but at losing myself.  It wouldn’t have been so bad if it wasn’t for those damn moments of sanity.

 

Ugh, they constantly reminded me of what I once was, so healthy and vibrant, and showed me what I had become. I felt defeated. I didn’t understand how all of this happened.  I didn’t want to go on, the fight was so hard.  I feared how much worse I would become; how much worse my family’s lives would be.  I was so scared, so scared that this episode of Major Depressive Disorder and Severe Generalized Anxiety would kill me.  In fleeting moments, I wish it would have.

 

Through all this fear, when I was lucid enough, I knew I needed to get help. I started the hunt for a new Psychiatrist.  I made sure I kept up with Therapy.  I asked for medication even though it was heartbreaking for me to go back on them.  I even fought to be hospitalized again because I knew it would help me.  I wasn’t going to let my fear kill me.  I couldn’t let my daughter lose her mother at such a young age.  I couldn’t let my husband lose his wife.  I couldn’t let my parents lose a child.  I fought for them.

 

It was a long rough journey, so bad, that I believe that the next episode will probably kill me. I’ve taken precautions though.  This time I will never go off my antidepressant.  I will continue to look for the signs, to seek out my fear.  I will be more mindful of my body and listen to it instead of fighting it.  Most importantly, I will remind myself that I have defeated Depression and Anxiety before and that looking at my track record, I am likely to win again.

___________________________________________________________________________

Yesterday was the 3 year anniversary of entering myself into the hospital.  Taking advice from several people (Therapist, family & friends) I do not dwell on how bad I was anymore.  When I think of that time, I acknowledge how far I fell, how bad I became and then, then I think about how far I have come.  I am healthy again, still medicated, still in therapy and still kicking ass.

When You Learn How Important Self-Advocacy Is

In the last twenty years, off and on, with my frenemies, Anxiety & Depression, I have learned quite a bit about living a life with Mental Illness. My first twelve years were in secret, keeping my mouth shut on anything relating to the words melancholy, empty, sad. I was told to hide, told that the stigma would ruin any chance of a career for me, would isolate me and make me feel even more lonely than I already did. I was ashamed that my differences made me plague-worthy. Who wants to be friends with a psycho?!

Eventually, I got fed up… or I should say, extremely deeply depressed. I couldn’t hide it anymore. My Postpartum Depression and Anxiety brought on my first step in becoming free of this stigma… I had to admit my illnesses to someone aside from my family. I had to tell my boss. I had no idea what would happen, if I would be let go for some stupid made up reason to hide the real dismissal of me being crazy. I had no other option though, I was hospitalized and in turn could not do the work I took home to do during my maternity leave.

I then started to tell some friends and upon seeing their genuine compassionate reactions, I realized not everyone believed the stigma behind having a Mental Illness diagnosis. It was from this point, about a decade ago, when I decided to screw the stigma and advocate.

Advocacy is defined as, “the act of pleading for, supporting, or recommending,” by dictonary.com. I dove right in, starting with Mental Illnesses that most were unaware existed, Postpartum Depression and Anxiety. I immersed myself joining up with a non-profit I found on Facebook one day. I bonded with fellow mothers who experienced similar events. Some of them proudly declared their stories while others still felt the need to hide. It was an amazing feeling to not feel alone.

By doing this I began to tell my story to anyone at any given moment. It didn’t matter if they never inquired about my illnesses. I wanted to get my story out there. I wanted to be a voice, a voice that was heard when many others were still so afraid to speak up. This was my main form of Advocacy. I told my stories and frankly couldn’t care less if someone responded negatively which was very rare. I rose up to the challenge of becoming a symbol of someone who could be successful and who lived with Mental Illnesses.

These last few years, I began to learn about Self Advocacy, the need to fight for my own care. This is not always easy to do especially when your own care involves a brain imbalance and what I like to call “thinking imperfections”. In the beginning, I even wondered who would trust me to create my own care plan… after all, that required someone with a healthy brain, not someone who was mentally ill. Now I don’t care. Majority of the time, I am in my right mind and can decide things for myself. But this was not always the case.

Three years ago, things changed. I quickly went from a stable human being to one having a psychotic break. There was no point in creating a Self-Advocacy plan at that time because the change was so rapid I could barely recognize it. One moment I could coherently tell my husband I needed to go to the hospital’s inpatient psychiatric unit, the next, I was in the fetal position scratching my head repeatedly crying for the rapid thoughts to leave me, that it hurt too much. It frightened my husband, my parents and my daughter who was 8 at the time. More importantly, in my lucid moments, it scared the shit out of me.

It was after this last episode with Major Depressive Disorder that I became extremely involved in Self-Advocacy. I needed to be. I knew how my body felt, what my brain was telling me, how the meds were working. When I needed a different type of therapy, I searched for the therapist. I worked together with my psychiatrist at the time in weaning off two of my medications. I made sure my doctors and my therapist were aware of each other. I began to practice Mindfulness and really took notice at how my body felt. There were no secrets anymore, no hiding.

And now, once again, I am advocating for myself. In the last 2 years 9 months, I have been through 4 psychiatrists/APRN’s at the same psychiatric group. They all left for some reason. The first, who saw me through my worst, left to have a baby and never came back. The second I saw once and then he retired. The third who aided me in my weaning and worked with me on medication changes left to become a head for an addiction facility. The last… I saw her once in July, just sent a letter explaining that she returned to work far too early when she had her first child and was now pregnant with her second. She decided to leave the end of the December. I was due to see her in January.

What to do, what to do? As I am waiting for my next assignment, whether it be a psychiatrist or psychiatric APRN, I am researching my other options because well, starting a 5th doctor in 3 years is kind of annoying. With my track record, the 5th is bound to up and leave too. There must be other psychiatric groups out there. Sad thing is, I am only down to seeing them twice a year just for prescriptions. I know for emergency purposes, my primary care physician would write a script for me. Problem is, my Anxiety has been worse these last couple of months and I foresee an additional medication being prescribed. As much as I like my PCP, I need someone who specializes in Psychiatry.

Self-Advocacy is a process that can be very time consuming and mentally and physically draining. When it comes down to it though, it needs to rank high in the self-care process. The only person who is going to care as much about your care and health, is you. What I have realized is that having a Self-Advocacy Care Plan is also a necessity. This can be used when you know you are not mentally stable. It is a list of things for your spouse, parents, or even a special friend to tell the doctors when you can’t. It allows them to advocate for you the way you would want to advocate for yourself.

I am currently putting mine together.

I Will Not Hide Anymore: A Letter To The Non-Believer

To The Non-Believer,

 

If I passed you on the street, would you be able to identify that I am not ‘normal’? Would you cringe and slither away from me?  Would you see me as different, weak, an attention seeker?

 

For years, I stayed hidden because of people like you. Taught to fear my diagnoses. Shh, don’t tell anyone.  I believed it.  I played into the stigma.  I did it for protection of what you might say or do.  I feared losing friends, family members, even career opportunities.

 

And then one day I said “Fuck it!”

 

It just became too difficult to hide, too shameful, too guilty. And why should I feel that way?  To hide from you and your posse?  On this particular day, many years ago, I stood up proud and said, “I have Major Depressive Disorder and Generalized Anxiety Disorder.”  I would hide no more.

 

And you laughed because to you, these illnesses did not exist, do not exist. To you I was weak, finding life’s normal stressors to hard.  To you I was seeking attention, because you thought I felt ignored.  It never once crossed your mind to believe me because hey, you can’t see these illnesses so why the heck would they actually be real?!

 

It didn’t matter that there were other invisible illnesses that you can’t see but believed were real. It didn’t matter that I was someone you knew for decades.  It didn’t matter that a fifth of the population would be diagnosed with a mental illness.  To you and your fellow Non-Believers, I was making it up.  It was all in my head.

 

All in my head. Yes, in a way it is.  My head contains my brain.  Mental illnesses are disorders of the, what?  Yes, the brain.  The brain, the thing that controls everything in your body.  It tells your heart to pump blood.  It tells your stomach to digest food and make energy.  How could we believe that it could turn against us?!

 

But it can.

 

It distorts my thinking, makes me believe I am a loser, unwanted, undeserving of anyone’s love and kindness. It tells me my friends and family can’t stand me anymore.  And in some cases, it makes me ponder hurting myself or if life is even worth living anymore.  Do you know what that is like?  To fully hate yourself, everything about you, everything you were taught at a young age made you the cool unique person you are?  No, can’t be real, right?  And then more emotions creep in, more lies that Depression makes me believe… the guilt and shame to any wrong doing I thought I did.

 

I can’t wish these thoughts away. Oh, how my life would be so much easier if I could.  I would gladly take one day of a horrible depressive funk if I was guaranteed I would wake up wonderful the next day. Stay positive, you say.  One of many phrases that are far easier said than done.  Then you throw out remarks such as grow up, man up, snap out of it.  You call me selfish for thinking about self harm and suicide because obviously, to your Non-Believer clan, I am only thinking of myself in this situation.  You think I am blocking what others may think or feel if I inflicted harm on myself.  The problem is, you have never been there, have never been in that position of just yearning to shut the racing thoughts and emotions from your brain, of wanting to not feel like an empty void.

 

Oh, and the lack of physical symptoms… I laugh. My anxiety causes so many.  Where to begin?  Shortness of breath, heart palpitations, extreme nausea, dizziness, insomnia.  In extreme cases, full blown panic attacks that feeling like I am dying from a heart attack, vomiting, constant muscle tension and hours of rocking back and forth.  You tell me meditate, go for a walk and my favorite, hug your child.  Not bad suggestions, but when I am tensed up in the fetal position, unable to speak, trying to scratch my hair out, these suggestions are not going to happen.

 

And then the hospitalizations. You wonder why our government needs to focus so much resources into Mental Health facilities.  You think my two brief stays were a wasted of time and money.  Yes, of course they were… I so wanted to almost bankrupt my family to pay for these stays.  That was my desire, can’t you tell?!  My response to you now is we do not have enough resources for people like me.  There are not enough inpatient and outpatient facilities.  There is not enough coverage through insurance for psychiatrist visits, therapist visits and medication.  And there isn’t enough because of you Non-Believers and the stigma you place on my population.

 

You call me a Millennial with the way I am “overreacting”. Life is hard, you say.  Stop being so weak, you say.  Everything will not be handed to you on a silver platter, you say.  It doesn’t matter that I was clearly born on the tail end of Generation X or that my parents raised me to be a hard-working person.  You laugh it off thinking somewhere in my childhood they fucked me up.  You would be sadly mistaken.  Except for a genetic link, my parents taught me to be respectful, loving and a go-getter.  They always told me not to expect everything in my future career because we all are easily replaceable.  They taught me that working hard got you to where you wanted to be.  You know, all the same things your parents taught you.

 

And now, I am angry, so, so fucking angry. Angry that this is still an issue, that many people who are diagnosed still feel they must hide, that they would be seen as weak or a freak if they went for help.  I am angry that so many people have taken their lives thinking that was the only way out because of you Non-Believers.  Just furious, even at myself, that I thought I had to stay silent.

 

But, I am silent no more.  I will continue to advocate for my community and myself.  I will tell my story.  I will not let the stigma become me again.  And, I will not wish you to experience the hell I have even though that might ‘turn you’.  The internal suffering and the suffering of your loved ones because they can’t help is too much for anyone.

 

Sincerely,

 

Stephanie Paige

A Mental Illness Survivor & Advocate

 

 

What Happens When A Dream Turns Into A Triggering Nightmare


Suddenly, I was back there.  That place, both a saving grace and a hell.  I was walking down the hall.  Bare concrete block walls.  Gray, solemn, just like the people that dwelled inside.  Doorways on both sides leading to rooms with aging office waiting room furniture that was once comfortable but now forlorn like their occupants.  I was one of them again.  An empty void, emaciated, internally crying for help.  Tempered glass and a counter to my left held those that treated us.  Their faces ranged from a gentle smile to a stare as if asking, “What is this person doing?  Am I safe?”  Slowly, I walked toward the end of the hallway where a window was.  Large, a glimpse to the outside world.  If only it was not right across the street from a cemetery.  

My eyes were welling up with tears.

Why was I back here?  There was no reason to be.  I have been doing well mentally and emotionally.  If this was the case, why was I, without warning, plunged into the short term psychiatric ward once again?  I was dreaming and being triggered.  Being both on the outside looking in and on the inside dying to get out.  

I have a love-hate relationship with the hospital’s psych ward.  When I was first there over ten years ago, I wondered why I was there.  I never thought I was experiencing the same problems as the other residents at the time.  I thought I was normal.  Ha, ha, good one Steph!  When I went back over two years ago, I begged for it.  I know being there would help me.


There are things I would rather forget about the hospital aside from the bare walls and gloomy atmosphere:  


The bed checks every 15 minutes… even if I was deep asleep, like clockwork I was awakened to a flashlight shining into the small glass panel in the door.  


The psychiatrists… although there to help, none of them appeared like they cared to help you. I spent all of five minutes a week day (they did not work on weekends or holidays) talking with them while their eyes looked elsewhere as if saying “You’re wasting my time.”


The wake-up time and routine… it was a bit rough waking up at 7am with all the medications I was given and then to go through the process of waiting in line to get weighed and our blood pressure taken.  


Lack of outdoor time… depending on your mental and physical state that day, you may be allowed to go for a short walk circumnavigating the hospital building viewing the nearby cemetery and emergency room.


But, where there is bad, there is also good.  As I mentioned, I knew I needed to be hospitalized again.  For some reason, I felt safe there.  I was only responsible for myself.  I could focus on my much-needed self-care and work on getting better even if it took a psychotic break to get me there.  I knew I would get the medications necessary to sedate me, stop my brain from its incessant thinking… you’re worthless, helpless, not worthy of love.  These medications would also stop my hysterical, borderline delusional, thoughts… take that screw, just jam it in your head, who cares if it kills you?!


Although the psychiatrists were lacking in care, there were some nurses that were a pleasant gift.  They would talk with you about your life focusing in on your face, treating you like a human being.  They remembered things you told them and asked you about it days later.  They were concerned about your care.  Sometimes they even sat and watched TV with us.


Aside from two very special nurses (1 each hospitalization), I made connections with fellow residents.  We talked about our experiences, gave each other advice, was there as a person who knew what it felt like.  I still, from time to time, communicate with my last roommate.


And yet, this dream triggered me.  I awoke with rapid breaths, scared, worried, panicked.  What did it all mean and why was it affecting me so badly?  I was somber the whole day.  Was this a prelude of another hospitalization to come?  Because of my Anxiety diagnosis, of course, here I am jumping to the worst conclusion instead of calmly thinking this through.  And if it is a premonition, why am I so fearful?  The hospital helped me.  Ultimately, I think I will have to consult my therapist on this.

When False Information On A Meme Makes You Angry…

Originally posted on Stigmama on Tuesday, June 20th:

The other day on Facebook I came across a meme… actually calling it a meme is too nice. I came across a shitty ad that basically told me and others that are Mentally Ill and medicated that we are now drug addicts. While addiction is a Mental Illness, I have not been diagnosed with it. I am a long time Depressive and Anxiety-ridden Mom that will fully disclose any part of my history because people need to know what it is really like to be Mentally Ill.

When I saw this, I was outraged, furious, and this was at 10am on a weekday morning in my cubicle at work:

What made this worse, was this was the pinned post in this group ‘The Free Thought Project’. My blood was boiling. I wanted to break something. Instead I decided to use this as an oppurtunity to educate.

I have seen many versions of this ad before (see below) consciously telling people that medication is evil and while I find them offensive, it didn’t hit me as hard as saying I now have a “lifelong addiction”:

                                        

Is medication shit… well I will flat out admit I wish I didn’t have to take it but comparing it to the stuff that would be on my daughter’s diaper years and years ago is a bit much.

Nature as an antidepressant… I agree wholeheartedly that nature is very rewarding.  I am an avid walker and hiker (and snowshoe-er in the cold winter months).  I love being outside.  After a hike, I usually find myself rejuvenated, feeling alive and most importantly happy.  A hike or a walk outside at lunch can ‘turn my frown upside down’.  There are just a couple of things wrong with this statement:  Nature does not have the same effect on everyone and when you are severely Depressed, it ain’t going to work, trust me, I’ve been there.

Being an Alpha personality, a control freak, a perfectionist, I will fully admit that I hated being on meds.  I couldn’t fathom the idea that a little pill (or four) controlled me.  I was only ‘normal’ because of them.  I thought I could get better without them.  I was wrong… very very wrong.

The first time I was prescribed medication was shortly after my 18th birthday.  It came in the form of a half white and half aqua capsule known as Prozac.  I was quickly told not to tell anyone I was taking it.  This was after I held a case cutter I stole from work to my wrist debating whether I should live or die.  This event, I was also told, to not speak of.  Ah, you got to love the stigma associated with being Mentally Ill.  Because of this, I thought medication was wrong, bad, sinful.  How stupid of me.

It wasn’t until my recent episode of Major Depressive Disorder and Severe Anxiety almost three years ago, that while getting better I finally said “Screw it!”  I didn’t care who knew.  If I had a megaphone, I would probably be screaming it.  There is nothing wrong with being medicated.  I really should create (or order if it exists) a shirt that reads: “Medicated & Proud Of It”.

These people that create these offensive and naïve memes have no idea what it is really like to live with these conditions.  Because it is invisible it doesn’t actually exist.  Because there is no official blood test or genetic test, we all must be making it up.  It is all in our heads… why yes, it is.  Because of a lack of Serotonin, something produced in my brain (i.e. my head) I live daily with two severe illnesses.  I am not making it up.  Who would make up paying monthly for medications, weekly psychiatrist & therapy appointments, being hospitalized, becoming severely delusional, considering hurting or killing yourself?!  Yes, I totally want all of this!

But we live in a society that believes Mental Illness is not on the same level as a Physical Illness.  It is okay if you take lifelong medications for illnesses such as Diabetes, Multiple Sclerosis, Lupus, and Cancer and that is not seen as an addiction.  Why is it okay for them but not for people like me?  Why am I considered ‘an addict’?  Why am I ‘faking it’?  I wonder if there was a real test that proved a Mental Illness diagnosis if these views would change.

I have weaned off medications a handful of times.  It can happen.  I lived 4 years med free before I entered into my 6th Major Depressive Episode.  Once on medication again, I took a hard look at my husband, my daughter, and my parents and told myself I didn’t want to see them suffer anymore.  I didn’t want to suffer anymore.  I decided then and there to never ever go off my antidepressant.  Lexapro and I will remain the best of friends.  I am not ashamed of my med.  Without it, I would be in a very dark place or not here at all.

To ‘The Free Thought Project’, research more on what is truth and what is fiction.  I don’t care if you lean liberal or conservative.  The Mentally Ill are a large population and by posting this, you are making us want to hide more.  Because of this, many people will stay silent.  Because of this, many people will not get the help they need.  Because of this thinking, more deaths by suicide will occur.  Remember that old adage “Stop and think before you speak”?  It would have come in handy here.

To all my fellow people with Mental Illness, please do not hide.  Do not believe a word of this absurdity.  There is help.  A walk in the woods can help, but it is not a cure.  It will not help as much as therapy and medication.  Remember:

 

How Being Hospitalized Saved Me

I grew up with the stigma that you never wanted to be known as crazy. Keep it quiet. Don’t ever speak about it. It can affect your grades, your career, your relationships. Hush-hush, on the down low. I obeyed these commands for fear that because I was a diagnosed depressed person, I would only be seen as crazy. I would be known as a woman who talks to herself or becomes violent because, well, that is how Mentally Ill people have always been portrayed in the media.

I’ll even admit, I fell victim to those views. I would thank God everyday that I was never hospitalized. I could live in silence with my depression and fane happiness by putting on a smile. Day in, day out, I plastered that smile on my face hiding the inner turmoil beneath. And then it happened, the day I feared the most, the day I had to be hospitalized.

At the time of my first hospitalization, I was deep into severe postpartum depression and anxiety. Honestly, I was extremely delusional and vaguely alive. My days were filled with multiple crying spells, several trips to the bathroom to vomit, not eating, not sleeping and spewing forth lies I believed that I didn’t love my daughter and my husband and her would be far better off without me. The week before entering the hospital, I was at my new psychiatrist three times and my new therapist twice. Five of those seven days I saw someone to help me and yet I was getting worse.

The final decision to go to the hospital was based solely on the fact that I thought I was extremely malnourished.

My mother brought me to the ER. I spent the next hour pacing the room or rocking back and forth in one of the waiting area chairs all while shaking uncontrollably and hyperventilating. My mother was extremely worried about me, beyond your typical Jewish mother worrying. She feared that my life was in danger. No parent ever wants to get to that point. Her fear never crossed my mind once as my only concern was my malnourishment.

I wasn’t deemed an emergency because I was not suicidal or having thoughts of harming myself or my child. I did, however, have extreme thoughts of running away, of removing myself from this situation, this situation where I didn’t love my daughter and wanted nothing to do with her. When I was brought back into a triage room and questioned by a physician’s assistant I explained quickly that I was one month postpartum and then angled in on my not eating/vomiting for a couple of weeks situation. The only doctor that was brought in to see me… a psychiatrist. This is where I was officially diagnosed with severe postpartum depression and anxiety. Her next question to me was:

“Are you willing to admit yourself to the short term psych ward?”

That is when I started to shake again. Tears rapidly fell down my cheeks. Psych ward? But that is for crazy people! Me? Crazy? Quick visions of strait jackets and padded rooms came into view. Fear that I would be drugged and left for eternity entered. I would never see anybody again. But this is what you wanted Stephanie, you wanted to run away and eradicate yourself from this world. Then I looked at my mother and my husband and said, “Yes.”

My initial day is a blur. I was so out of it, physically drained from all the crying, vomiting and shaking. I think I attempted to sleep through most of it. Of course, I was drugged, but at this point didn’t care. I didn’t care about my well being at all anymore. I could’ve wasted away to nothing and I would’ve been cool with that.

But, on day 2, I was pulled from my bed and brought to group therapy with the threat that I would have to go home if I didn’t ‘participate’. Therapy brought on stories from others who were ‘obviously’ more sick than I was, at least that is what I thought. I heard their struggles and their successes. I was given food and although it was very hard in the beginning, I started to eat and guess what? I didn’t throw any of it up. I was given coping tools in art therapy by drawing, crafting and journaling. I was becoming more human. Within days, I anticipated visiting hours when my baby girl would come to see me and I held her the whole time.

Being hospitalized saved my life. If I didn’t admit myself, I am not sure where my delusional thoughts would’ve taken me. The hospital gave me the ‘Me’ time I so desperately needed. It gave me a break from my responsibilities to others and forced me to take care of myself first. It gave me medication that got me stable (although apathetic). I felt safe there, safe from myself.

I felt so safe there that when, 8 years later, I needed help badly, I knew I needed to be hospitalized and begged for it. Once again I was riddled with extreme anxiety that had me nauseas from sunrise to sunset. I had lost lots of weight and was grieving the loss of my foster son back to DCF. This time, I was worried about myself. This time I had thoughts of hurting myself. This time I cared about getting better. I, not ashamed, admitted myself to the same short term psych unit I was in all those years ago. I did it because it saved me then, and I knew, it would save me now.

*****

Being hospitalized wasn’t perfect. The psychiatrists were basically non-existent during my visits, the first that lasted 12 days, the 2nd lasting 5 days. Both stays contained weekends and holidays, days that, well, doctors didn’t work. I mean who wants to work on a weekend or holiday?! It’s like us patients could put our issues on hold until they came back. The life saving measures I found in the hospital were through myself being able to focus on me, medication, their slipper socks (still feel safe in them), and its therapists and nurses. They were nice and didn’t treat us as a threat to society. We were respected. We were people.

I don’t hide the fact that I have been hospitalized. It is not a hush-hush situation for me anymore. People need to know what it is really like. People need to know that anyone around you, your parent, your coworker, a friend, could be battling a Mental Illness and may be or have been hospitalized. People need to know that One Over The Cuckoo’s Nest is not typical.