Throwing something back…

I haven’t written a blog entry in several weeks. The recent depression has taken me in, blurring the borders of days, and blurring my thoughts even more. But, light is beginning to seep in… and my thoughts are beginning to form.

In the midst of this last depressive episode, my grandfather passed away. I somehow felt this loss harder than I was willing to allow myself. It was as if I had allotted myself a given depth of sadness to feel and I surpassed it. Having gone farther than I anticipated into my grief, I felt alone and closed- no true way to communicate the sadness and grief. I can say that my relationship with him was a complicated one. Once very attached to this man, then he disappeared in my youth, and his actions, though he was gone, followed me like a scarlet letter denying me family rights. Add into the mix that my son is his little twin, the grief gets deep and his death makes it final. But, each day is a step of moving forward.

And I am now left with the question of do I write or do I go. I have so much more to explore and share about my motherhood journey at diagnostic code 295.7. But, I let myself disappear. Nonetheless, for now, I think I will write.

Pressing me right now is the cognitive disorder that has developed as a result of the schizoaffective disorder. I continue to take Namenda (an Alzheimer’s medication) and I see progress, but I also witness decline in other areas. I recently visited my psychiatrist and a resident sat in on the appointment. My case was of note of interest. As I am someone who once taught at the collegiate level, it is of interest to explore the decline in function that this disease can bring about before age forty.

I realize something, though, and that is perspective. Many before me did not have the option of drugs like Namenda… I do. And while the disease battles on, so will I… even if I have to take a break from writing now or then. The disease will give me everything its got, its my choice to throw something back.

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Breakthrough

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You can follow your treatment regimen and take your medication as directed and somewhere along the way, there will be a breakthrough. A breakthrough of your symptoms flaring loud and overwhelming your day, days, or week. Last night, my breakthrough began. Today, my breakthrough continues.

With schizoaffective disorder, you live with hallucinations and delusions… it is the “schizo” part of the blended name. Last night during my shower, I began to think that a dear person to me was dead- that she had died as a result of my negligence. My heartbeat rose and self talk though the irrationality could break the hold. Then as I exited the shower, my right ear felt suddenly full- as if something was implanted. This is when the noise began and it hasn’t left. I have dealt with a constant static noise since then that will ring back like feedback from a microphone at loud noises. In fact, I told my husband that I am thinking there is a microphone in my ear. Though, I don’t know why I have it or how it got there. I have tried lying on my right side, utilizing q-tips, and nothing relieves this feeling, the thoughts, or the overwhelming noise and sounds.

My mind is battling right now. It is asking if my thoughts about the microphone are true or if, like my husband assures, I need to take additional Seroquel. I am tired. And it is loud.

So today, things are simpler. Intentionally simpler. My son and I had a frozen meal for lunch. We are playing quieter, and moving quieter and a bit slower.This is what happens during a breakthrough, the dial is dialed down.

I think we use the word breakthrough because living with a chronic psychiatric illness is like walking on a frozen lake.  Every once in a while, there is a crack. And every once in a while, that crack breaks though and you touch the icy water. You have to move smartly and with metered control to climb back up on the ice. Nonetheless, the risk is always there.

So, here I go moving smartly by relying on my husband to help me reality check and continue with my treatments and, also, moving with metered control as I climb up from this breakthrough.

Where is the easy button?

I recently asked my husband, who is also my caregiver, what he would say to others in regards to living with schizophrenic disorders.

His response? “There is no easy button.”

My husband and I have been together for twenty years. He has witnessed and lived the tumultuous journey of mental illness with me. Even though when we met he did not know I was ill, he often states he knew something was “off.” And as our relationship progressed, he has traveled the road next to me through various treatments, hospitalizations, medication regimens, social and work challenges, personal turmoil, a suicide attempt, and the countless challenging days of living this life. So, I have to agree with his assessment; there is no easy button, magic wand, or a way to snap your finger and progress through this disorder. It is work. Daily, hourly, and sometimes minute by minute work.

As my husband and I have traveled the past twenty years, he has had to develop a true expertise in psychiatric treatments. When a new medication is introduced, he not only researches that medication, but also how it interacts with my current cocktail. Of course, he keeps himself prepared for the side effects that will join in on the journey. For example, with Clozaril he accepted that I had to sleep with towels because of the excessive drool. He also had to research when the diagnosis of tardive dyskinesia arose in my twenties while on Haldol and how we could lessen its impact. The side effects from the medications are numerous and are not easy… medication is not a magic bullet. But, the secret is finding the right medication where the benefit outweighs the side effects.

What also is not a magic bullet and is never easy is to be hospitalized. My husband has been beside me through twelve inpatient hospitalizations. He has dealt with difficult doctors, the overhaul of medications, and the aftermath of when the hospital staff has stated I was not ready to be discharged, but the insurance will not cover any more nights. Of course, there is also the financial challenges of hospitalizations. It is not easy.

He also been there when I faced discrimination due to my illness and lost countless friends along the way. He helped me pick up the pieces after losing a job after an inpatient hospital stay and he also helped me find another route to my masters degree when my first choice school said no due to my diagnosis. He knows how lonely it can be with my illness and how friends often disappear; but, he has stayed. There were never any easy options, but we worked through them.

More than anything, the daily life of living with schizoaffective disorder is challenging. My stability can change with varying degrees from moment to moment. Everything from human interactions to sleep is impacted. And my husband is right, there is no easy button. There is no magic pill… or cure.

But, it is that way with life, in general. We often wish that an easy button would appear to ease us through a situation. But, it doesn’t exist and there truly are no shortcuts. So, at the end of the day, you focus on the blessings, the good moments, and the days that went just a little easier than the one before. And because I have my husband, that is easier to do.

Purring Mania

This past Thanksgiving was an anniversary for one of my cats. One year prior, during Thanksgiving weekend, I purchased her during a manic shopping episode at Pets Mart.

My aunt and I had went to Pets Mart to buy cat litter, after having stayed up all night shopping the night before, and were just going to “visit” the adoptable cats. Next thing, I am filling out paperwork, have named the selected cat a special Swedish name, and have even ran to an ATM and back to ensure I had the cash for the adoption fee. At this point, insert the cat in to a box carrier and buy some kitty goodies, and I have a new manic purchase. It even purrs.

When we arrived home, my husband walked into the garage and heard the yowling while I was talking very fast to explain the situation. He just shook his head and said, “but, you took your meds!”

Now, one year later, we have a very well fed, chubby, and soft kitty named Mancha. (My mania bestowed Swedish name was changed.) And this past Thanksgiving reminded me of staying up for several days without sleeping, agitation, extreme excitement, sweating, racing thoughts that I could not catch, and my Mancha.

My husband was also right. I had taken my meds. In fact, we were having out of town visitors and I knew that staying routine on my medications was of utmost importance. But, the brain chemistry can override the medication. The medication is vital and helps, but anything can happen. Mancha is my furry and purring reminder of that fact. And, I think having her as a reminder is important… for a few reasons.

First, she reminds me that I do need to take my medication. While my brain may of overridden the medication in her case, I fear how many cats I would have with no medication. Ultimately, how would my impulses rule me? I am responsible for a little boy, so let’s not push that button.

Second, she is also a gentle reminder that sometimes things don’t go as planned. Yes, she was not intended to come home with me. And rationally, another pet should have been a family decision. But, she is a sweet reminder that when things go sideways, sometimes you just have to make the best. I can say she is a sweet fit in my family with a soft spot for my son.

So, happy anniversary, Mancha! Thank you for being my reminder. And thank you for the last year’s worth of purrs.

I am okay, today.

Today, I am okay.

Today, I am better than I have been in several weeks. I am not 100%. However, for the past several weeks, each day I have wondered if I needed my husband to take me to the hospital. Everything has been in slow motion wrapped in paranoia with distorted thinking accompanying my constant overwhelming feelings.

But, today, I know the hospital is not necessary. Today, I am okay. This morning’s dawn came a little easier as I rested a little easier through the night. Today, I have been able to enjoy my toddler a little more as I have been able to relax and step back from the cloud that has been following me. So far, I have been able to tackle a few items on my to-do list without crippling under the overwhelming thoughts. My son and I went shopping and I was able to drive, pick out my items, and check out without paranoia, taxing rumination, or finding myself overthinking to the point of not being able to buy anything on my list.

I also know that today is okay and not perfect. I need to let it be. No grand life changes or big decisions today. I need to let my cycle happen as I come up for air as I have been drowning. It is as if the brain is opening back up to the light and you don’t want to push too hard and scare it back shut.

Nonetheless, today I am okay and it is good to be okay. I don’t need the hospital today. I can function today.

And tomorrow? I am hopefull will be okay, too.

One of my greatest blessings…

As I venture on my mommahood journey at diagnostic code 295.7, there is a partner that helps make it possible. He is my caregiver, the father to my baby boy, and the love of my life. He is my husband.

For many years I would not consider motherhood. Then late one Summer, I had an epiphany. My husband was not my father. He was the complete opposite of the man I grew up fearing. Also, my husband had cared for me over the many challenging years. He managed my medications, accompanied me to doctor appointments, brought me supplies when inpatient, and looked out for my well-being in every way possible. Furthermore, my husband was loyal. He had demonstrated that quality by remarrying me several years ago when I had divorced him during a whirlwind of mania. This was a man I loved and could raise a child with safely. The only thing stopping me, was me.

So, I took a leap of faith and received an amazing baby boy in return.

But, I have something here that so many others facing severe mental illness do not have. That is a caregiver that works with me as a partner in my journey. Too many are expected to manage this illness on their own… fighting a battle where your brain is working against you. It not only works against you, it tricks you.

One of my greatest blessings lies in my husband. He monitors my medications, checks in on my symptoms daily, supports my needs, and often knows what I may be needing before I am ready to admit it. He has been there through twelve in-patient hospitalizations, eleven treatments of electroconvulsive therapy, one month of partial hospitalization, a suicide attempt, and the past eighteen years of treatment. I am blessed. No other word.

As a society and as a medical establishment, I wish we could learn the power of support and caregiving. I wish we would allocate funds and personnel to such endeavors. I wish we would reach out and help each other, not just place everyone on an assembly line of “care”.

Bottom line, no matter who we are, we need support… we need a caregiver.

Facing the Cycle

I have fought acknowledging this reality for a while now. I had been able to surface for a few moments, take a few gulps of air. But, it is here. I have accepted it. I am in the downswing of the cycle. I am in depression with the increased psychosis.

This is the trademark of schizoaffective disorder. You have the extremes of mood and the schizophrenic disorder weaving its way through the roller coaster.

Over the past several weeks, when I would stop for a moment, the depression would grab me. I would cry, weep, and then push forward. Gradually, these moments became more severe, containing in them intensely dark thoughts about myself. Thoughts that weighed down on my chest and created despair. But, as I mentioned earlier, I could seem to surface here and there… find that gulp of air.

Then this past week arrived in slow motion. I would walk, but I was walking though water. My mind was full of dark cotton with everything dulled and no true sensory experiences. Everything around me ran together. I have made sure my son was safe and cared for… myself? not so much.

And then there was the volume of the noise The noise that I only I hear that accompanies me and that I can never free myself from was elevated. As I would try to lie down, the noise would rage in my ears. The quieter I tried to make my home, the louder my noise would roar. And the paranoia was growing and touching on sensitive areas. It was fostering intense insecurity and creating more reasons for tears. Just a hint of the insecurity, and tears were there.

But this evening, as I slowly walked down the hall, a small glimpse of clarity appeared. This is the cycle. I have cycled again. One would think after so many years with this disease that I would understood this progression. But, I couldn’t. Several weeks down this path before I understood. The fatigue, loss of functionality, increased psychosis, dark obsessive thoughts, and sadness were telling me something.

So, what so I do now? First, keep taking my medications. Next, tell my husband. Of course, call my doctor. And, I have to care for myself.

Cycles are a part of this illness. This will happen again. But, I have to face it and work through it.

The State of Being Shocking

I woke up from what seemed to be a vivid dream in a room that was foreign to me. I looked around and the only thing familiar were a few items of clothing on the nightstand. I slowly crawled out of bed and walked to the hallway to be greeted by a red haired man with a stethoscope. He knew my name and I assumed he must know what was going on. So, I asked him where I was. He explained that I was in Denver, Colorado (not the state I lived in), that I had entered a fugue state after my last treatment of electro-convulsive therapy (ECT) and driven my car to Denver, and now had frontal lobe brain damage from the ECT treatments. And the thing was, I could not remember any of this. In fact, the previous three years were pretty much gone.

From what I have been told, at the end of the Summer of 2005 I entered into a severe depressive episode. This episode escalated into a quasi-catatonic state. My husband had to help me dress, eat, and engage in basic daily life tasks. My treatment team found me to be medication resistant and ECT was suggested. After a consult with a psychiatrist that performs this procedure, he also agreed to this course of action. Next, I received eleven bilateral ECT treatments before my unplanned Denver trip.

But, there is one other issue with this treatment. The psychiatrist performing the ECT was concerned early on that my electrical shock induced seizures were not strong enough to be beneficial for my illness (Schizoaffective Disorder). He augmented my treatments by going beyond the recommended voltage for the bilateral shocks. Whether this contributed to my fugue state or my frontal lobe damage, I will never know. I do know we signed a waiver before the treatments started, so the issue is rather mute.

Furthermore, the ECT didn’t seem to help alleviate the depressive episode. When I was finally released from the Denver hospital and returned to my New Mexico home, I was re-hospitalized within two weeks for suicidal ideation and depression. Eventually, the episode cycled and medication began to assist me. But, I also have to state I have hospitalized since then, as well.

What the ECT did impact was my memory and also changed some aspects of my personality. The three years I mentioned earlier are still pretty much gone. I really only have a few moments recovered. And now that my Schizoaffective Disorder has led to a Cognitive Disorder, my memory is even shakier- including long term, short term, and working memory. Everything from spelling to daily tasks to conversations are impacted. I describe my long term memory as the “Nixon Tapes”… it goes along, then nothing. As far as my personality, some of my preferences in music were completely and abruptly altered. Also, certain behaviors developed, such as gum chewing. In addition, my “mental filter” is sometimes non-existent. Want to know my opinion? I may give it to you with some profanity for good measure.

Some have asked me if I regret agreeing to receive ECT. And I do not. I have no regrets. Schizoaffective Disorder is very difficult to treat. You have a blending of Schizophrenia and Bipolar Disorder. Sometimes, there are risks to take. And unfortunately, not all risks pay off. But, you do at the time what you think is going to help in your desperate situation.

I also have to look at the positive side. Yes, I have frontal lobe damage. Yes, my memory function is impaired. But, my frontal lobe damage is not so severe that I cannot be a wonderful mommy to my beautiful boy. It is not so severe that I cannot be a life partner to my dear husband. I’m still here… home with my family.

My Brain is Failing Me

I receive the questions periodically…

“When will you finish your doctorate?”

“Are you going back to teaching in the future?”

“When are you going to work again?”

The fact is, I have made peace with not finishing my dissertation and, therefore, never have the initials Ph.D. after my name. I have also made peace with the reality that my future does not include teaching again or any other career. I consider myself to have entered early retirement from my career as a college professor and I have done the mental work to accept my shift in status as I embrace my life as a stay at home mother.

Why?

A major portion of the answer to this question is that my brain is failing me. Or, I have entered into what is technically termed as cognitive decline or impairment and the diagnosis of Cognitive Disorder has been added to my records. This is very standard for someone living with a schizophrenic disorder. One’s immediate working memory in conversations or tasks becomes impaired and unreliable. Remembering conversations from the previous day (or earlier that same day) is highly difficult. Following conversations can be overwhelming. The ability to follow through on tasks without a detailed list becomes impossible. And so much more as it progresses. Basically, the simpler… the better. And the less stress… is even better.

In order to contain the progression, my medication cocktail has been augmented to include a medication that is commonly utilized for Alzheimer’s patients. Being 38, it feels rather surreal. But, I look at my toddler son and the importance of trying this medication therapy becomes very real. He is not quite two years old, I have many years left to enjoy his laughter, smile, shining eyes, sweet hugs, and I must try anything at my disposal.

In addition, if becoming more realistic about my needs stress-wise and also simplifying my life are needed in order to preserve my health as best as possible for my child, husband, and myself, then that is what I must do.

So, becoming a stay at home mother… shifting my status… becoming more realistic… While it has been a true adjustment, it is a must for my health and a must for my future as a wife and mother.

Detour of Isolation

It tricks you. It works against you. You battle it.

When living with a schizophrenic disorder, your  brain can become your foe. Your brain, the control center, can fool you and send you on a detour.

As anyone with any form of schizophrenia can attest to, social interactions are a challenge. But at the same time, the isolation is painful. And enter in that pesky brain, you can go down a path of paranoia, self doubt, isolation, fear, and arrive at a place where social interactions are far from your abilities.

I found myself there recently; on that detour of isolation that was partially self made and partially cemented by delusions. I let the voice mails pile up on phone… a total of twelve voice mails that I was too afraid to listen to and could not begin to even respond. I also began to think how my friends had decided to cut me out of their lives- based on nothing but faulty brain messages. I was also convinced these friends were talking about me in a negative way with each other. I missed a get together with a friend and didn’t even respond to the friend about the get together. I found myself paralyzed by a brain that couldn’t fathom the complication of making a simple phone call.

As I traveled on this detour of isolation, my brain continued to trap me with delusions and  paranoia. And slowly, without warning, the fog began to lift just a little and I was able to reach out just a little to a friend. There was no rhyme or reason to the cycling of the delusions or paranoia. No warning.

Isolation in schizophrenic disorders is complicated. For one, your brain does you no favors as it transforms reality. Also, relating to others, in and of itself, is a challenge. The isolation seems to be a common state that just reaches high points at times.

I think this is one of the reasons I write. I send out these experiences to vast virtual world. It is a way to connect and lessen the isolation that can trap me. So, if you are reading this, thank you for helping me break the isolation.