Monday, July 18, 2016

Rethinking Schizophrenia



It has been a very long journey.

It has been heartbreaking.

It has been scary.

It has been full of uncertainty.

It has been exhausting.

However, the journey has taught me some valuable things about my boy (now a full-fledged man), myself, the world and its cruelty towards the mentally ill, and the beauty of a community held tightly together in the middle of the worst storm on record. It is most touching to me to have watched over the years as strangers became my friends - bonds formed out of fear, necessity, and most of all, a need to promise each other that it was all going to be okay, that there was HOPE even when it felt like there was nothing left to hang on to.

My post today is about that hope manifested in the form of a beautiful (now with teal streaks of hair) young man named Thomas who one day, years ago, came to me with an unmarked envelope, wearing a respirator mask, and insisting there was anthrax inside that envelope meant to, once opened, end his beautiful, burgeoning entrance into adulthood. It is also about my beautiful young man who now has a quick, ready, smile for the camera hoping to show off his most creative expression of his newfound sanity, those teal streaks in his hair.

For years I begged for that smile and stood by as he forced one that belied the chaos swirling in his brain.

For years I waited for a lot of things and

for years I slowly gave up on my already tenuous grasp on hope.

When I looked at my adorable toddler opening his Christmas presents with laughter and wonderment years ago, I never, even for a second, thought I'd spend years of his life and mine, on a vigilant and nearly constant basis, watching for the next sign of psychosis and trying to plan for how I was going to fix it or take it away altogether.

That is what we do as caregivers of someone living with schizophrenia. We watch, we wait, we hang on to hope, and if we harbor faith in a higher power, we spend days and nights on our knees praying for peace for our loved ones with schizophrenia and for our exhausted selves.

But what happens when our prayers get answered? What happens when everything we've lived for years beforehand gets flipped over and our loved ones with schizophrenia land on their feet and we are finally able to let go and breathe deep, lung fulls of air?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I began this blog in desperation not long after several psychiatric and medical professionals told me Thomas would never get better and that, in fact, he would only get worse from there culminating in him fully lost in psychosis and in prison for an as-yet-unnamed crime. At that time, I had a child with schizophrenia and I knew full well what the label of "schizophrenia" earned him out in the world filled with people with preconceived notions of the illness and uneducated opinions about our loved one being the next public shooter. When I began this blog it was my mission to change that misguided impression by telling Thomas' story and my own as his caregiver.

I'd like to believe that I've put a dent in that and that I have been the voice of many who are too frightened to speak up because the stigma around this illness is so oppressive.

Apart from that, I'm writing today for the most important reason of all and for those of you in the trenches still fighting this insidious mental illness. I'm writing today to give you hope and to light any blown out candles.

My Thomas and in many ways your Thomas too, is doing amazing.

He hasn't just had an amazing few days or an amazing couple of weeks, he has been doing amazing for months.

Yes, MONTHS.

There are residual symptoms like a solitary voice that just won't let go of him and some mild cognitive symptoms that lessen in severity as these months pass by and he's still on a boatload of psychiatric medications and living at home with his dad and I but for all intents and purposes I believe it's safe to say he is in recovery.

RECOVERY.

Yes, we've all heard this elusive word but we've never dared to dream it could happen to us. I am here, though, to tell you that it does happen and it's happening to Thomas.

I can't even begin to tell you all of the things that he's done and said that have proven he's better but I just have to share a couple today.

My first, and probably most favorite took place a couple of months ago. He needed a new cell phone so I took him to get one. On the car ride there I asked him what he would do if they took his existing phone in exchange for a new one and he didn't even hesitate and told me he didn't care if they took it.

"But what about all of your private text messages to your girlfriend?" I asked.

"I don't care," came his reply.

Then I launched into how nerve-wracking it was for me to contemplate them having possession of my phone with all of its secrets. I told him how, even if we deleted that information, that they could find it. I told him I'd watched enough "Criminal Minds" shows to know just exactly what the F.B.I. could do with a cell phone if they decided to try. I told him that I would rather die than let our cell phone provider have even a minute of access to my phone. 

He listened to me ramble on and he was quiet and when we stopped at the red light, he piped up,

"Mom, you're more paranoid than I've ever been!"

Laughter erupted from me, I'll admit it was a bit of a nervous laugh because all I could think was,

"I am pretty paranoid sounding, aren't I?"

But that moment marked a huge milestone in both of our lives. I had become more paranoid than my son with paranoid schizophrenia!

Somehow he and I had traded places. For all of the times I had said silently to myself that I'd do anything to take this illness from him even if it meant that I ended up with his schizophrenia, here I was, a tad paranoid myself (though I feel it's justified) and my son was getting a kick out of me being crazier than he says he's ever been.

There have been other events that showcase his recovery. Again, during these times he and I traded places and the trend became him remembering and me forgetting,

A) Where we had parked the car in the Walmart parking lot.
B) That I had asked him to do something hours before and when I found him doing that thing, I had forgotten I had asked him to do it but there he was, doing it and doing it with enthusiasm.
C) That I had asked him, before a long work day for him, that I thought it might be good for him to get his paycheck stubs printed up for Social Security. He had gotten in the car after work and dropped a stack of papers on my lap and when I asked him what they were, he told me they were the paycheck stubs I had asked for and promptly forgotten about. He remembered, though.

I could list things until I'm blue in the face but I reserve the best one for last so that I can share it now.

It was a few days before my birthday when it started. He'd get in the car after work and tell me that he'd spotted an item he thought I might like. I told him those things sounded great but nothing more came of those inquiries. Then, on my birthday, he and I went somewhere and the longer we were out the more visibly anxious he became. I asked him about it and he finally admitted that there might be something on the porch for me that could melt and he was worried about this mystery item. I was amused and for the rest of the day he anxiously and repeatedly looked out the front window for the delivery truck determined not to let the mystery item melt on our front porch.

When it finally arrived I carefully and slowly opened it. What could he have gotten for me? He'd never been a present-giver but I always wrote that off to his being lost in the throws of surviving day to day with schizophrenia yet here I was unsealing a box and excitedly anticipating what I'd find inside. Nestled inside was a small pink-striped box and inside that box were four cake pops--one of my most favorite things! Attached to it was a note that read:

"Thank you for all that you've done for me mom. I love you."

For starters, he had nailed the perfect gift for me having watched me enjoying a cake pop months before. However, most touching and most surprising for me was, right there in my hands, written in black and white was a "thank you for all that I've done for him." In that moment, in the most beautiful way possible, my previously lost boy was found again and he had taken notice of the years I had dedicated my entire life to him and he had thanked me for it. I offered him one of my cake pops to which he said,

"No mom, I got those for you. Enjoy them!"

Then I picked one up for myself and bit into the sweetest thing a mom with a son with schizophrenia could taste. It was dark chocolate cake with chocolate chips and a decadent frosting but it was, more than anything, a sign that my son had found himself and in that process, found his way into a world free from lurking monsters and full of loved ones he couldn't wait to share his love with.

Since then, practically every time he's come out of work, he has carried a bag full of treasures for someone he loves like mesquite wood smoking chips for his dad to use in the barbeque, a box of cake mix for he and his grandma to make together, tropical flavored bubble gum for he and I to share and countless other things.

Then on the way home from work, a police car will pass by us and I will eye it and be ushered back to the not-too-distant past when a rush of anxiety would wash over me knowing that my son saw that police car as an indication that they were coming for him to arrest him for some crime he believed he had committed but that was never actually a crime to begin with. Now, however, 

A police car is just a police car

And now I can take a deep breath and relax and he can chatter on about his sore feet, the long hours he has just worked, and the old lady he didn't hesitate to help find the coffee.

So, here it is, on a screen, in black and white and written especially for all of you who are mired down in this illness and tenuously holding on to the last threads of hope.

RECOVERY FROM SCHIZOPHRENIA IS POSSIBLE.

When it happens, you and/or your loved one with schizophrenia won't believe it's real.

You'll second...

And third...

And fourth...

And fifth

Guess yourself. You'll say,

"He's doing better, but....."

And you'll fill in the space after that "but..." with any number of things like,

"He still says kind of off the wall things."

Or

"He's isolating himself a lot lately."

Or

"He still has so far to go."

But if you stop for just a second you will realize:

That you and everyone you know say off the wall things all the time too,

That you isolate yourself from the world too for any number of reasons on any given day,

That you still have so far to go too

I implore you though, 

Stop.

And look how far you and your loved one with schizophrenia have come.

We are all on a long, long journey. There will be mountains to climb. There will be a whole host of things that will step into your path but do not ever let anything be the thing that defines your entire journey and causes you to lose sight of what you most want and desperately wish for.

--Not those overworked psychiatrists that say your son is a time bomb.

--Not those relatives and friends who have all kinds of advice about what they would do if they were in your situation.

--Not the nightly news report read by a respected news anchor enthusiastically reading the words to the world at large that condemn those living with a mental illness.

--Not the uneducated father of a friend of your son who, when he hears that your son has schizophrenia, shouts for all the neighbors to hear that they better watch out because your son is going to kill them.

--Not the idiots on Facebook who post that they're "schizo" today when really what they are is ignorant, thoughtless humans posting to get as many "likes" as they can.

NOT ANYONE.

And don't let the bad days that can turn into bad weeks, months, and years EVER make you lose hope or feel like a failure as a caregiver or stop you from praying for a miracle and by all means,

NEVER LET THEM CAUSE YOU TO GIVE UP ALTOGETHER.

If you go back and read all of my posts on this website, you will see how often I came dangerously close to doing just that. I remember nights I secretly hoped God would take me silently in my sleep because I felt I didn't have a single fiber of my being left to wake up the next day and do this all over again but I did wake up and I strung together the fibers of my being that remained in me and I did it again and again and again. 

Do you know why I did? 

It was all for my beloved Thomas. 

If he had to wake up every day fighting monsters I couldn't see, then I was going to be there too, giving him everything I could with which to slay those beasts.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I tell him as often as I can to be grateful for his good health. I tell him that few are as fortunate as he is and today I told him,

That he is the living, breathing promise to you all that it does get better and that this elusive thing called "recovery" isn't just a myth.

Monday, May 16, 2016

Who Is Fighting And Who Is Not

Hello everyone!

Once again I've taken a hiatus and virtually disappeared from both my public life and my private life. I haven't had an easy few months but I'm fighting like hell to reclaim my life. I am getting closer to getting ahold of what's been lost and I will be back soon.

Many of you have messaged me and asked me how Thomas is. In my fog, I had forgotten, yet again, how much you all care about him and about me too. I'm writing this short post today to let you know that Thomas is doing well for the most part. I want to, and will, elaborate on the events of our lives in a future post that I will write soon.

I really appreciate your love for and concern about Thomas and I promise I'll be back soon to fill you in.

Much love to you all!

Friday, March 11, 2016

The Awakening

(Picture credit: thenextweb.com)

I have been gone a long long time.

I have been silent here on my blog.

I have a reason that is nothing short of a miracle.

I have been watching THOMAS BEING BORN AGAIN.

I'm not sure exactly what's happening and his doctors seem baffled too but I swear to God, I am bearing witness to some kind of miracle.

Throughout the last few weeks I have likened what's happening to Thomas to the movie starring Robin Williams and Robert Deniro called Awakenings. I included a 3 minute clip from the movie below for you to take in. It's short but it so eloquently describes what is going on with Thomas. In the movie, the patients are institutionalized because they have serious Parkinson's Disease and they are basically frozen in time. Then, the doctor (Robin Williams) comes in and after much consideration decides to put some of the patient's on L-Dopa (a dopamine stimulating drug). Time passes and then one night it happens.....




...They start to wake up. Previously physically and mentally frozen, the patients begin to dance and talk with each other and play the piano. After years frozen, stuck in wheelchairs and beds, they are alive again.

It's beautiful and Thomas, his awakening, his rebirth, is beautiful too. Often, when I am in his presence lately, I marvel at my child who no longer looks or acts like a child. He is a 21 year old young man, making plans for his life, that I now fully support and encourage, and he's blowing through milestones in healing at lightening speed. For a few weeks I have thought about writing about each thing he's accomplished but I've been scared to. I've been scared to dare to hope that what I am witnessing is something that will stick.

But then it happened. Something so HUGE and SHOCKING that I can no longer keep the secret.

Two weeks ago, in therapy, Thomas talked about getting his driver's permit. He was nervous about it and Dr. K. and I talked with Thomas about the steps he'd need to take in order to get it. I didn't think for one single second that anything would be accomplished with it. My historically anxious, paranoid, vacant kid was changing but getting a driver's permit seemed like a near impossibility.

Over the next couple of days I watched as Thomas took the initiative to navigate the DMV website and learn everything it takes to get a permit. When he had questions that he couldn't find answers for I told him to call the DMV and ask. Before I go on, it was just 2 weeks prior to that that Thomas was saying there was no way, no how that he would dial a phone number to speak to ANYONE, even family, Well, twice Thomas called the DMV, twice he had ZERO anxiety, and twice he was successful in getting the information he needed. In two weeks time he went from being terrified to being completely 100% capable of making phone calls.

So during those two weeks I urged him over and over to study for the test and he basically blew me off and I just gave up and let things be. Then, Monday night, he announced to me with conviction that he wanted to go, at 10 a.m., to the DMV the next morning and take his test. I was dumbfounded. He hadn't studied and here he was with lofty plans to just wing it and go in and take the test.

Suddenly this all felt so familiar. Suddenly it hit me that he was delusional again. I mean, seriously, who goes in and takes a test without doing any studying not to mention a person with schizophrenia who previously couldn't keep track of things from one moment to the next? I became very sad and I told him there was no way this was going to happen.

He fought me on it.

He fought me in true delusional form. The familiar angry eyes, the insistence, the stubbornness, and I left the room in anger and in sadness. I thought for a few minutes about what had just transpired and I went back to his room and sat down with him and had a talk about delusions. I explained to him that he would be able to recognize a delusion because they are usually something where you expect to do the impossible and do it 100%. He listened quietly and afterwards, I, again, walked away.

Then Dan came home. We went in to change our clothes and in a desperate whisper I told him what had just happened. I explained that Thomas, in fact, wasn't getting well after all because he was becoming delusional again about this test taking. Then Dan calmly said,

"Just let him do it! He wants to do it, he feels good about it and the worst that can happen is that he'll fail it and he'll learn that he actually does need to study."

So, I went into Thomas' room and told him that his dad said he could go ahead and take the test.

Of course he was THRILLED.

So at 10 a.m. on Tuesday we went into the DMV to take the test. My anxiety was sky high. His, on the other hand, was NON-EXISTENT.

Really?

He went over to take the test and I went out to sit in my car and wait.

Within what seemed like a very short amount of time he appeared at my car window and I opened to the door to hear what he had to say fully expecting the worst.

I couldn't have been more wrong.

Not only did he pass the test on his first try after no studying and YEARS of cognitive issues, he missed just 3 questions and he needed me to come in and pay for his permit.

First of all, I was shocked. Then I started laughing.

And laughing

And laughing

And laughing.

This was the laughter of a mom with a son with schizophrenia who had been waking up for the last 3 months and who had crossed a major hurdle and did it like a pro. This was the laughter of a mom in complete shock and UTTER AND COMPLETE JOY.

We went in to pay and then we went on our way.

When we got home I texted everyone and told them about this miracle and I sat in stunned silence for a while.

Then fast forward to yesterday. With GREAT TREPIDATION I agreed to let Thomas drive us to therapy. When Thomas was first learning to drive 6 years ago he narrowly avoided accidents, he zoned out while driving and he blew through a couple of red lights completely unfazed. 6 years ago I thought that there was NO WAY I would ever EVER let him get behind the wheel of a car again.

Then he got very sick.

As you well know because we've all done it, I began to let go of my dreams for his future.

With his awakening, though, lately, I timidly got into the passenger seat of the car, said a little prayer that we'd make it to Dr. K.'s office in one piece and Thomas took off driving. Let me tell you something...

Thomas drove like he's been driving for years. Every speed limit was followed, every law was followed and as I looked over at him a few times, I saw that he had zero anxiety.

HOW IS THIS POSSIBLE???

After therapy we had to go across town to the pharmacy and the route to it is fraught with many challenges of merging and typically crazy driving on the part of the others on the road. I told Thomas I would drive to the pharmacy. He surrendered the keys.

After picking up his prescriptions, I decided to throw caution to the wind, to relinquish control, and I gave him back the keys and once again got into the passenger side and said another prayer. I was about to set him loose in serious traffic and he was going to have to cross a bridge where he would have to drive next to a wall in a narrow lane with, really, nowhere to go if he made a mistake. I asked him if he was nervous about the bridge and he brightly said, "No!" and off we went. As we neared the bridge I looked at him and saw....

CONFIDENCE.

We drove onto the bridge, he was in the lane next to the wall (this is the bridge)


(Picture credit: dreamstime.com)

and without any...well...ANYTHING...no anxiety, no shaking, no nervously eyeing the wall, he buzzed across the bridge, got to the other side and turned the corner.

He turned the corner. He turned the real corner and he turned the proverbial corner.

HE IS AWAKENING.

I rode along with him the rest of the way home furiously trying to figure out what had just happened.

WHO IS THIS KID WHO LOOKS LIKE MY SON BUT SOMEHOW IS NO ONE I RECOGNIZE???

We got home, he parallel parked the car with just a couple minor adjustments and we got out of the car and I followed him to the front door.

I was, and am, in shock.

For weeks now I have watched as my son with schizophrenia, with previously serious cognitive issues, with previously serious anxiety, with previously serious paranoia, and with previously lofty delusions, turn into a young man. A REAL young man. Not a man who appeared and behaved like a child. For weeks now I have watched as a light, as if on a dimmer switch being slowly turned up to brighten, has lit up my son.

Parts of me don't know this young man. Parts of me are completely awestruck and confused about what has happened to him over the last few weeks. Parts of me are seriously daring to believe that he can do...

...ANYTHING HE WANTS TO DO

And that bright shining light of his warms us all now, bathing us in what can only be called a miracle.

Everyone is shocked. I'm sure you all are shocked too.

Everyone has questions about how a young man with schizophrenia can just WAKE UP.

In spite of the questions, however, we are all enjoying these times and we will never let go of a single minute of Thomas' awakening.

Thursday, February 04, 2016

The Heaven-Sent Surgeon


Today, I happily introduce you to:

Dr. Robert G. Holman.
General surgeon
from Kootenai Surgery Associates in Coeur D' Alene, Idaho

Normally I keep the names of the doctors in Thomas' life private but in this case, I want to shout this man's name from the rooftops. He deserves all of the kudos he can get and I'm going to take my chance to do so from the "rooftop" of my 7,725 member blog.

Dr. Holman had his work cut out for him by having to enter an exam room with the parents of a son with schizophrenia who had had enough of the medical community. There Dan and I were, dressed professionally and poker-faced, just waiting to pounce. It wasn't that we were going to be rude in any way, it's just that we had high expectations and we wanted them met.

Dr. Holman entered the room with two women armed with a laptop and he introduced himself and explained that the women were going to document the entire meeting.

Score one for the doctor (for insuring accountability).

Then he went straight to Thomas' chart, looked it over, and pondered--out loud--about what exactly Latuda was. He was about to venture a guess and I jumped in and told him it was an antipsychotic.

Score two for the doctor (for inquiring about a medication he wasn't too sure about).

After that he asked about why we had chosen him and come so far from home to see him and we explained how the medical care we had received in our town was sub-par, at best. He was impressed that we had made the drive but told us he was happy to be chosen to treat Thomas. He asked about the previous surgeon and I'll admit I showed my adamant, inflexible side and I told him,

"I didn't like the guy. I didn't like what he said and I didn't agree with a single thing he did or recommended."

And Dr. Holman took a small step back, got very serious, and said,

"Well I hope I live up to your high expectations."

Well, doc, you've done a beautiful job so far!

Then he examined Thomas' wounds and was THE SWEETEST, FUNNIEST, MOST COMPASSIONATE doctor I think I have EVER run into in Thomas' entire life of medical and mental health treatment.

Score 3 for the doctor (for caring about Thomas and not treating him as anything less than the amazing young man he is).


He treated Thomas with RESPECT and tempered his professional demeanor when he picked up on some of Thomas' qualities that make him seem like a child. He maneuvered dealing with Thomas and with Dan and myself with ease and adjusted his language (from doctor-speak, to fellow parent, to dad, to compassionate human being) with ease. I was awestruck as I watched and listened to this amazing doctor.

While examining Thomas' wounds, he complimented me on how well I'd done with my wound care and he explained to me about bacteria and infection and told me to relax a little about those things. He showed me a new way to pack the wounds, took away some of the tedious tasks I'd been doing, thereby cutting my work in half, and NOT ONCE was he condescending or doubtful about my capabilities both as a caregiver and a mom. Again, I was awestruck.

Then he sat down and took the next 10 minutes to explain everything. He told us about studies that had been done on the different types of care that had been used for the last 30 years for these types of wounds and (this was my FAVORITE part) he told us that he had met with and talked to the very doctors that had pioneered the specific surgery that I wanted for Thomas and he said that if he was going to do any surgery at all that this particular surgery would be THE ONE he would do. However, based on Thomas' particular case, he felt that I had done such a beautiful job of caring for the wounds that he felt surgery was not an immediate necessity. He felt, with continued wound care like I've been doing, that Thomas would heal and he would be okay. However, in the event that the condition Thomas has returned, he would do the surgery happily.

Score four for the doctor (for being educated, experienced, and encouraging).


He then joked with Thomas in the sweetest, funniest way that he was disappointed that Thomas hadn't brought him a more serious case and that he felt cheated out of a chance to do a surgery.

We all laughed.

And we all felt relief.

He said that, for now, the worst case scenario was that if the wounds didn't heal from the bottom up and the top closed over before that, that I would need to bring Thomas back to have the wounds cut open a little so I could go back to repacking them until they healed properly. He had high hopes, based on his vast experience, that this would be the end of the whole thing and Thomas would be able to move on.

Wow! Who would have thought that were possible?

In all honesty, though, based on my personal experience with Thomas and his schizophrenia, I feel certain we'll be back for the surgery and in the event that that is the case, we now know that the surgery won't be too serious, that it only takes 45 minutes to an hour to complete and that ultimately, when the surgery does take place, that Thomas will be in the best hands possible.

So, we went on our way and for the rest of the day, I stopped several times and just said,

"Wow!"

I mean, SERIOUSLY, could it have gone any better?

Here I sit this morning, free from most of my stress, no longer fearing the unknown and grateful to God for this incredible outcome.

Most of all, I want to introduce all of you to this perfect surgeon, this compassionate man whose name is Dr. Robert G. Holman. If it's at all in my power to make sure this man is honored for his respectful, caring treatment of my son with schizophrenia then that is my goal by writing this post.

Wednesday, February 03, 2016

Today Is The Day

I'm writing this post on my phone (which makes it harder to go into much detail because I hate typing on my phone) because today we will be headed 3 hours north to see a new surgeon! So much has happened since I last posted and I'm sorry that I haven't kept you up to date.

I did some serious research and found a surgeon that specializes in the exact surgery Thomas needs. Not only was he available but he is also well educated. His studies have been done at Co...rnell University and University of Washington. I couldn't be happier. In a future post I will have to fill you in on the quack surgeon we originally saw.

Anyway, not only is this new surgeon an expert in this particular surgery, is well educated, comes with good reviews, and works at a facility I trust but HE ALSO TAKES MEDICAID!!! Can you believe that?? I was thrilled when I spoke to the staff and they told me that they do. I'm really hoping he's as good as my research on him says he is. He's kind of our last resort. On the humorous side, I saw a couple pictures of him and I really like the way he looks. I know I shouldn't judge a book by its cover but he looks like a nice guy and I REALLY need a nice guy after the last quack.

In an hour and a half we get in the car and head north. Thomas' appointment is at 1 p.m. PST. This appointment is for an exam and to set up a surgery date. I will post an update or two throughout the day so be watching your time lines for those updates.

Wish us luck!

Saturday, January 23, 2016

The Ignorance Of The Masses

You just know someone is your good friend and that their parents love you when the father finds out that you have #schizophrenia and his comment to his son, who is your son's good friend,

"Watch out Jon! He's going to kill you!"

Yeah....

Way to show your glaring ignorance, stigma, insensitivity and seriously flawed personal character!
IDIOT!!!

Thomas told me yesterday that was what his good friend's father said to him when he revealed he has schizophrenia. And this is the friend that Thomas wants to move out of our house to live with independently. Needless to say, Dan told Thomas in no uncertain terms that he flat out won't allow Thomas to live with this particular kid.

I FULLY support Dan.

We aren't jumping on this lightly because this friend also has consistently taken advantage of Thomas and his money (the kid knows Thomas gets SSI) among other things. This comment about schizophrenia just took the cake.

Friday, January 22, 2016

Unbelievable. Just Unbelievable.

I am late getting this post out today because I didn't sleep last night and I'm trying to get enough coffee in me so I can function today. Omigosh, what a day Thomas and I had yesterday!

First of all, I know some of you are wondering what kinds of wounds Thomas has exactly. I will reassure you that they were not self-inflicted but they are personal and I want to preserve Thomas' dignity by not getting into the details about them.

As for the surgeon's appointment yesterday, be glad I didn't post here last night. I was SO FURIOUS and my blood pressure was sky high and I couldn't see past my anger to form a coherent thought let alone a readable post. I have NEVER, in my life, had the experience that I had yesterday with a medical professional. I must first wonder,

"Is this the kind of care and personal treatment that Medicaid gets you? Are we, all of us on Medicaid, pariahs because our loved ones have this illness and people just don't think we deserve something better when it comes to medical care?"

So, the surgeon walked in, literally looked me up and down with a critical, condescending look and immediately passed judgment on me and then proceeded to treat me like crap for the rest of the appointment. I had to swallow a whole hell of a lot of anger and remember I was there for Thomas so any judgment passed on me and the anger I felt about it needed to be set aside in order to be effective for Thomas.

The surgeon first looked at Thomas' chart and said,

"I see you've been dealing with Dr. Baker."

Doctor Baker? Who the hell is Dr. Baker??? I knew then that we were not off to a good start. They hadn't even gotten Thomas' chart right.

TERRIFIC.

Then he went on to examine Thomas and tell me that Thomas looked great. Hmm...great. Really? He has open wounds with 1 in deep cavities that I also discovered yesterday when I was packing them with gauze that inside the wounds, there are tunnels up UNDERNEATH what appears to be healthy skin. So this "medical professional's" opinion left a lot to be desired. He then whipped out 6 inch long q-tips, soaked them in hydrogen peroxide, and jammed them into the wounds. Hydrogen peroxide has been proven to be a medically incorrect way to treat wounds like this because it compromises and even damages healthy tissue. I asked him about packing the wounds and he said I didn't need to do that anymore and that just taking a shower once a day will keep them clean and healthy. Take me seriously here, no shower will accomplish what he's talking about. It just won't. However, according to the surgeon, the wounds are to be left wide open for 6-8 weeks to heal. There's not a snowball's chance in hell that I'm going to leave open, gaping, cavity wounds to be victim to bacteria.
So then I asked him for a referral for wound care and he turns to me with his now famous condescending look and says to me,

"You look like you can handle this just fine. You've done it up to this point, just keep doing it for 6 to 8 weeks."

I was stunned into silence. What was I supposed to say? I told him that it had been difficult for me up to this point to do this by myself and he told me that it really just wasn't that big of a deal. SERIOUSLY??? Needless to say, he wouldn't give me a referral so I could get Thomas proper wound care.

Wow.

Then he informs us that Thomas will definitely need surgery but that he won't do it until the existing wounds heal. So let me get this straight. We're going to heal up the wounds so that we can make BIGGER, MORE INVASIVE wounds that'll require months of recovery??

SERIOUSLY??

Then...THEN came the icing on this disastrous cake. The "medical professional" tells us the extent and nature of the surgery and then tells us that it has a 25% success rate.
25%?!?!?

Really? So why exactly are we doing this surgery? With that kind of success rate he said that Thomas will probably have to have more surgery in the future.
I am completely speechless.

Then he sent us on our way and we went out to the car and I just sat there in stunned silence and anger and tried to get my thoughts together enough so that I could even drive. At that point I had no clue what do to, where to go, or what to think. I was filled with such rage!

Today is, fortunately, a new day. I am still filled with anger but I am now a mother and advocate on a mission. Starting at 9am I am making calls to get referrals for wound care and I'm going to figure out how to get a second opinion on the whole surgery thing.

THIS IS NOT OVER. NOT BY A LONG SHOT.

So that's where we are at the moment. As much as it hurts my heart to cause Thomas pain, I'm going to keep packing his wounds until I get some professional help.

Poor Thomas is now SCARED TO DEATH about surgery and I'm concerned with keeping him stable and keeping those nasty positive symptoms from returning because he's so stressed out. My boy does not deserve this and I'm going to fight like hell for better care for his wounds.

Wednesday, January 20, 2016

At Last, A Proper Wound Care Education

Good morning! I really want to continue updates for you all because some of you are participating on the page here so I know how much you care about Thomas and how much you want him to be well. As I said yesterday, we had an appointment with his primary care provider who is a nurse practitioner. Thank God for her, I'll call her Christie in order to simplify this post.

Christie was surprised to see us again because we had just been in to see her last week for a standard 3 month follow up. At that time she had examined Thomas and expressed concern about his physical health issues but at the time she didn't know things would get as bad as they did last Friday. She examined him and talked to me about the condition of the wounds. I told her about our less than effective treatment in the E.R.. She asked if they had swabbed the wounds to see what kind of bacteria might be in them and shook her head in disgust when I told her how very little they did for him. Then she began treating them and as she did so, thankfully, she simultaneously taught me proper wound care so I am finally feeling fully capable of caring for Thomas until we see the surgeon tomorrow. While she took care of Thomas, she and I, along with her assistant, exchanged varying emotional glances at each other about Thomas' condition. In those moments, I knew my worst fears that I'd had for days were confirmed by a medical professional. This brought a strange comfort but also reinforced and increased my fears about Thomas' health.

There is no more guessing.

There is no more Googling and trying to sort through conflicting results.

I am left, now, with only the hard truth and I am left to find acceptance of everything.

It's a scary place
.
One thing Christie said, which she prefaced with saying she is by no means a surgeon, was that she believes Thomas will definitely need surgery. The extent of the surgery, however, is unknown. She explained what she felt would be the conservative treatment and then what could happen as a worse case scenario neither of which I am happy about and both of which are scaring Thomas. I have an ever-growing concern about the level of stress all of this, is and will, put on Thomas. As we all know, stress exacerbates schizophrenia symptoms and that is the last thing Thomas needs right now. It's going to take everything he's got to recover, even under the best case scenario Christie outlined.
So, today will consist of me trying out my newfound wound care education, a prospect that upsets me because it causes Thomas great pain. No mom wants to hurt her child and essentially being forced to do so is nothing short of traumatic--at least for me.

Now, our next step is to see the surgeon tomorrow. I'll post on Friday about that unless I find myself sitting cramped in one of those miserable hospital room chairs after having no sleep because Thomas is recovering and I want to be there with him every minute. I hope, though, that I'll be right here in my living room in my favorite recliner drinking good coffee instead.

Tuesday, January 19, 2016

Thank God For The Staff That Cares

As promised, and amazingly for me, I'm actually back today to update you all.

First, I want to thank all of you for your love, prayers, support and 'likes'. Every one of them helped in many ways. For starters, Thomas' wounds started to look better yesterday afternoon. They weren't bleeding and my totally medically inexperienced eyes think they are seeing little infection in the wounds. Perhaps my cobbled together medical supply table has the right stuff and perhaps I'm actually doing something right as far as treatment all thanks to hours on Google and, of course, no doubt, all of your support.

So, yesterday I took the risk that the surgeon's office was open even though it was considered a holiday and when an actual secretary answered (not an answering service) I didn't even say "hello" because what spilled out in a rush of gratitude was,

"Oh my God.

You're there.

Thank you.

I thought you'd be closed today and I really needed you to be open."

Then I laughed and apologized and said "hello". I explained to her that we had been referred to the surgeon and she initially told me they couldn't get us in until next week.

NEXT WEEK????

There was no way this was going to wait until next week.

She then asked details about the issue and then said,

"Ooooooohhhhhhh..."

And then,

"I'm really sorry." And then something about us being in it for the long haul.

Ugh. Terrific.

So she told me she'd call me back and see if they could move staff meetings and other things around and I hung up and waited.

And stressed out.


Then the call came, the call backed by your love and prayers, and she told me they could get him in on Thursday at 1:15.

I thanked her over and over and then listened as she gave me instructions for everything I'd need to bring to the appointment. You know? I've got to say something about what I think might be unique to a small town. So far every medical person I have talked to have treated me like I'm legally able to be given Thomas' health information. Granted, I'm doing all of the talking while he remains virtually mute and they know I'm his caregiver but I guess I expected at some point someone was going to deny me my ability to speak for Thomas. It is, however, a HUGE reminder that I MUST get legal paperwork drawn up A.S.A.P. to handle Thomas' medical and mental health stuff.

Needless to say, this is all good news so far.

Today, in an hour, we will see Thomas' primary care provider so hopefully she'll be able to tell me SOMETHING. At the very least about the health of his wounds and how I can properly care for them. I am grateful for this appointment. So, I need to close this post for now and go wake Thomas and get ready for the appointment.

I will write again tomorrow.

Monday, January 18, 2016

AN UPDATE ON THOMAS

Hello everyone. I wanted to check in with everybody because I have gotten multiple personal inquiries about Thomas and I. I know that I have been away from blogging for a long time but there have been a myriad of reasons for it that I won't go into in this post. I know you all wonder and worry about Thomas and I wanted to give you a short update. He is doing pretty well mentally and that shows itself in his growing vocalized sense of hum...or and the fact that he sings AT THE TOP OF HIS LUNGS to his favorite songs. He's truly a joy to be around right now in that respect.

Unfortunately, though, like schizophrenia likes to do, it lulled me into thinking that all was right with the world. I operated in a world where, with Thomas, I thought we were moving towards healing. I'll admit I saw some worrisome signs when it came to the negative symptoms of his illness but I tried to keep positive and pray for improvement. Then last Friday happened.

Because of the delicate, personal nature of the issue with Thomas and because at this point in time I am unable and unprepared to write about what's going on with him while also honoring him and his dignity, I will have to keep some things vague. What I will say, though, is that he has developed an incredibly serious physical and medical issue that landed us in the E.R. on Friday. Because of the nature of the issue, the E.R. staff would do little for us and simply referred us to a surgeon.

That was it.

No useful advice for me as his caregiver, no medical supplies or shopping list for medical supplies, no nothing except for a piece of paper with a surgeon's phone number on it and urgent encouragement to call the surgeon Monday. Well, today is Monday, a holiday (the surgeon's office is closed), and I am now on day 3 of being a VERY UNEDUCATED "medical professional" learning from Google as I go along about how to take care of Thomas . I am constantly praying that I am doing everything right medically for Thomas until tomorrow when we will at least see his primary care provider and HOPEFULLY I'll get some counseling on how to take care of Thomas' medical issue in our home until we see the surgeon.

So, that is where we are, currently, and I am scared to death and feeling incredibly alone. I would like to ask you all to pray or send good, healing vibes for Thomas and for strength for me. I will do my absolute best to keep you all updated as the week goes on and I find out more information, get some guidance from medical professionals, and prepare for Thomas' surgery.

Thank you everyone!

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