Difficult Decision Part IV: "100% Better"

This is a continuation of my reflections of how difficult it is to decide to take medicine. (Here are Parts I & II and Part III.)

Reading the many possible side effects of my medication.

I have been on my new medication for a week now. As I mentioned in my previous post, I started with side effects of dizziness, extreme fatigue, and feeling faint. Now we can add to that some side effects I prefer not to mention, weight gain (yes in one week), and racing heartbeat just walking up the stairs.

However, according to my husband and son, I am 100% better than I was before.

Dang it!! This would be so much easier if the medication did not work. Then I could just stop the meds and have lost nothing. Instead I have side effects for which I need to have more tests run to see how the medication is affecting my body and now I fear needing to stop it due to finding out that it is hurting me too much to continue taking it.

I actually have never been this stable. Even when I was "stable" before, while I was able to get through my life and be productive I still had a baseline of feeling miserable, sad, and angry. Now mentally I feel fine most of the time, which is really weird for me (post about that coming soon).

I can't believe after a life of misery and after 13 years of medications, that we have found one which works, only to have the risk of losing my sanity again if the medication is too risky to take. Or I continue to take it but have side effects which seriously limit what I can do. Such as, is driving safe? Will I ever be able to exercise again or go on a bike ride with my son with this increased heart rate? Will I be fat forever?

What the heck is that all about?

These are the times when I question what kind of God, Universe, etc... messes with people in this way. What is the purpose in this?

All questions I will be exploring further, but for right now, I just need to wait. Wait to see how long this stability lasts, and wait until all the tests are done and we see what we are dealing with.

Blessings,

Rev. Katie

Difficult Decision Part III

This is a continuation of my blog post Part I & II about the difficult decision to take medication:

I have been on my new medication for two days now and I am uncoordinated, dizzy, and speech is more difficult for me. I was not manic at night yesterday like I usually am, and I was a little more stable during the day yesterday.

Today my son and I were at the NAMIWalk for mental illness (shout out to all the wonderful people I met today) and I was tired again, but by mid-morning I was actually playing catch with my son as we waited for the walkers. I was thinking that maybe the medicine is helping and I was so grateful to be having fun with my son.

Then I was reading a book to him and I started to feel faint and like I was going to fall over. I tried to eat some cereal I brought with me but kept missing my mouth as my coordination was so bad.

I had driven to the walk because I thought could drive this morning, but now I knew I could not drive home. My Dad had to come pick us up.

This is why deciding to take medicine is so difficult. I might have been having a better day earlier just because it was sunny out and I do have some good days, or it might be the medicine. It is too early to tell if the medicine is working yet, but these side effects mean I can't really drive because I might get stuck somewhere and get dizzy. This means I need to stay at home for now.

The worst part today though was how my son was affected by all of this. I had to tell him that I felt faint and if I fall, I will be ok, but he should tell someone and call 911. I felt it was better to tell him beforehand so I did not just fall over and he would be scared and not know what to do.

So then my sweet 7 year old son was worried about me and acting as my caregiver. He wanted to keep my cell phone in his hand and as we were cleaning up the display table, he wanted to carry everything and make me sit on the ground so if I fell I would not hit my head on the concrete. I feel so awful about putting him through that kind of fear and in the position to have to get help for me if I needed it.

He told me I should not take the medicine anymore. I said it might make me better, more happy, so we can have fun like we were when we were playing catch. He said "What's worse: Being unhappy from bipolar or dying from medicine?"

Good question my beautiful child.

This is why the difficult decision continues.

Blessings,

Rev. Katie

Join Me at the National Alliance on Mental Ilness Walk

Tomorrow morning I will be at NAMIWalks Cleveland. I will be there as part of a walk team and I will have a booth for the Carolyn L. Farrell Foundation for Brain Health's bike tour, Ride to Imagine.

Please come out and walk and come visit me at my booth.
NAMIWalks Cleveland

Location:	Voinovich Park behind the Rock & Roll Hall of Fame Cleveland, OH
Date:	September 24, 2011
Distance:	2.5 MI
Check-in:	9:00 am
Start Time:	10:00 am

The Carolyn L. Farrell Foundation for Brain Health is named after my mom who is currently living with dementia. A few months ago we started the foundation to be able to bring ArtCare programs to people with dementia and other forms of brain disease, including mental illness. Right now we have an ArtCare program for people with dementia and we want to start one for people with mental illness. I would love for you to comment below or talk to me at the NAMI Walk about what kinds of art programs you think might benefit people with mental illness. Right now I am thinking about one involving scrapbooking as I have seen that be very helpful to people with bipolar disorder and depression.

I hope to see you at the walk tomorrow and/or at the Ride to Imagine on October 8.

Click here to donate to our team for the NAMIWalk.
Click here to register for the Ride to Imagine.
Click here to donate to the Carolyn L. Farrell Foundation for Brain Health.

Thank you for supporting our community and I hope to see those of you who live in the Cleveland area soon!

Blessings,

Rev. Katie

Difficult Decision Parts I & II

I don't always know if people really understand how hard it is to decide whether or not to take medication. Most of the time, people judge those of us who go off or won't take medication, as if just taking it would solve all our problems. However, medication is just one part in the treatment plan for mental illness, and while it may help, it also has big risks associated with it.

In order to shed some light on just how hard this decision is, I have decided to share with you what it is like to have to make the decision to take medicine or not. I have two parts of this post already and I will follow up with future parts as I progress in this decision.

Difficult Decision Part I (written over a few days of thinking about taking new medication)

I was struggling a few weeks ago over taking new medicine. I eventually came to terms with the fact that I have to take medication and took what was given to me. However, I just got worse and worse. I saw my doctor again last week, and he prescribed another new medication for me. When I got home and read about it, I just couldn't make myself take it.

This is a new class of drugs for me, with side effects that are significantly more risky. The probability of getting one particular side effect increases the longer you take the drug, and it is not always reversible. I could end up with permanent tardive dyskinesia, which is uncontrollable movements of the face, mouth, and other parts of the body.

A new warning from the FDA just came out this month about the serious risk of anaphylactic shock with this medicine. There is also the risk of NMS, which is a potentially fatal side effect.

With the other medicines I have taken, I knew that if I had a side effect, I could stop taking the medicine, and it would go away. This new class of drugs has side effects that are not so simple.

Frankly, at this point, I am not willing to take such a drug. These side effects sound too risky to me. No doctor, no matter how amazing, can predict what side effects and how safe any medication is for an individual.

Maybe I am too crazy to know what is best, but I see no way in which it is safe for me to take this medicine. I do not understand how medicines like this are even ok for people like me. I have not ended up in jail or in the hospital due to my illness. Were I close to death because of this, I might consider taking it. Instead I am miserable and barely able to function, but I still do anyway. This will get slightly better sometime and I will go back to gain a bit more ability to function, but at least I won't die or be stuck with facial ticks because of medication.

Maybe it is because I have been sick for so long that I have gotten used to knowing I will always be miserable. I know miserable. I know the hell of bipolar, but I don't know these medications and the side effects that could happen.

Is it worth it to take such a risky medication when no medicine has worked so far? I risk my life for the likelihood that the medicine won't work. That does not seem reasonable to me.

Difficult Decision Part II (written the next day)

I took a lot of time to think today about how my illness affects others around me; my husband, son, parents, friends, work. I can see how the current severity of my illness is making my son more sad and concerned. I see how my husband and Dad truly worry that if I continue to get worse, I will kill myself. I know many of the lifestyle changes I need to make to be stable, yet I am so sick right now that I can not do them.

I have spent my whole life sick with times where I was more stable, but never had a day without my moods going up and down.

But my husband asked me today, "What if this works?"

If it works, I could wake up in the morning and not hate my life. I could spend as much time with my son as I want.


I could get things done more efficiently. My family could stop worrying about loosing me either from suicide or packing up and leaving them. I could maintain all of the other things that help with bipolar and be very stable, not just stable enough to get by.

So, I will try the medicine for the first time tonight. I admit, I am scared. However, I have been scared before and that has not stopped me from fighting for my life and what I love.

The decision to take medicine does not end the day you start taking it. I will need to see if it helps, monitor any side effects, and get regular blood levels taken. The decision is ongoing and never easy.

I hope this gives you a glimpse into how hard this is for many of us, and not a decision we make lightly.

I would like to hear how other people have made decisions over whether or not to take medication. What helps you decide?

Blessings,

Rev. Katie

Faith in My Wellness and Our Future

When things get bad, as they are for me right now, sometimes a loved one says something that helps you laugh in the midst of despair, or helps you feel loved in the midst of darkness.

The other day I said to my husband "You want to divorce me don't you?" He laughed and said "No, but I would like it if my wife was a little less crazy" and he gave me a hug.

He has faith that somehow I will get back to my "less crazy" self. I think he is right, but I still don't know how he makes the choice, every day, to stay with me anyway.

Again, a song from the musical Next to Normal explains it so well. Here are a few of they lyrics from Why Stay?/A Promise:

Here's what I say to the girl who was burning so brightly
Like the light from Orion above
And still I will search for her nightly,
if you see her please send her my love.
And the boy was a boy for all seasons
That boy is long lost to me now
And the man has forgotten his reasons
But the man still remembers his vow.

A promise a man says forever
A man says I'll never regret or let you
The promise I made to stay and I stay true.
Knowing one day we'd remember that joy.
You'd remember that girl
I'd remember that boy, till we do
The promise I made I'll make it brand new.
A promise that I made to you.

To me, it's not so much about the promise he has made, but the faith that he has. Faith that thing will get better, even though we have been going through this for seventeen years. Faith in the vows that we made to stay with one another through good times and bad, sickness and health. However, it is not a faith in some outside force that will make things better, he has faith that we can get through this together.

Me and my boys, who always have faith in me and our future.

Blessings,

Rev. Katie

The "Chosen" Illness

It is very interesting for me to watch how the stigma against dementia, which my mom has, and the stigma against mental illness varies. There are many similarities with both illnesses, such as how people are uncomfortable around you and there is this feeling that people with these illnesses are weird and embarrassing. However, the big difference is that most people have compassion for people with dementia. Not as many people have compassion for those of us with mental illness, particularly with bipolar disorder. I believe this is because most people think mental illness is a choice, whereas they see dementia as an illness inflicted upon someone.

But let me tell you, mental illness is never something I would have chosen. I would not wish it on my worst enemy. Why would I chose this much suffering? Why would I chose to have this affect my family?

No one would chose that. No one would chose to have something else take over your brain so much so that you try and stop yourself from your actions and you can't. It is as if you are watching something horrible happen right in front of you, but you can't get there fast enough to stop it. Some people even have times when they don't even know what they did for hours or days at a time.

The choice I do have though is to keep fighting. Sometimes the only way I can make that choice is because I have asked people to make it for me when my brain is so impaired that I can't do it myself. That is why people with mental illness need compassion. This is an illness which we did not choose, we deserve the same compassion as everyone else, and we need help.

I often hear people judge others with mental illness and say they are irresponsible, bad, and intentionally mean, especially when what someone has done has hurt another person. I do not believe it is alright for us to hurt others because of our illness, but the fact is, this illness does hurt those around us. So does every other illness though. Breast cancer devastates the patient's family and friends. Dementia causes many patients to be mean to their loved ones. Every illness affects the people we love.

People often say of patients with dementia who belittle, yell at, and demean their spouse: "It's just their illness." However when I do not act as kind as I should to my spouse, people have said to me: "You are a horrible wife."

Instead of blaming the person, it would be much better if we helped them. It was not until my husband had compassion and understood my illness was not a choice that we were able to work together to find a way for him to hold me accountable and intervene when I have little choice in my actions.

For instance, I overeat sugar when my illness is bad, and then the sugar just makes me worse. It was not until my husband understood that I can't just choose not to eat the candy in the house that he was able to help me. Just today I was very angry and went to get candy to eat, only to find he had locked it all away. He was able to give me agency in my life and help me do the right thing by taking over for me when my mind does not give me a choice in what I am doing.

Understanding that mental illness is not a chosen illness has allowed me to ask for help. Actually, it allowed me to insist that I deserved compassion, just like everyone else. Which means I finally know that I am a good person and I will do whatever it takes to be stable. I do understand some people have such severe mental illness that they can not even make the choice to ask for help, to try and be stable. We can still hold them accountable, but not believe they are a bad person who chooses to be this way.

I didn't choose my illness and I can't always choose what my mind does. However, I can choose, with the help of others, to set up my life and make a plan that gives me the most possibility of success. I chose to ask people to hold me accountable and help me get back on track. I chose to never give up.

Blessings,

Rev. Katie

I Was Never Free

As I have been reading "Welcome to the Jungle," a book about bipolar disorder written by Hilary Smith, there are many things I can identify with, but one thing I can not. I do not ever remember a time when I have been free of bipolar disorder.

Smith talks about how to handle when you or someone else realized your behavior is not your "normal" behavior, and you are diagnosed in late teens or early adulthood.

While I was not officially diagnosed with mental illness until I was 19, I knew something was wrong starting at age 6. I just did not start to receive medical care for it until I was 19.

I have no pre-bipolar life. No time when I was ever happy, stable, free of anger, mania and depression. When I read of people having a stable life and their trigger/onset starting when they are older, I feel a sense of loss and fear. I feel sad that I won't ever know the me who is not mentally ill. Then that makes me feel scared because it is kind of scary knowing you were never well. Then I am scared that I will never be able to manage this and be stable enough to have a good life. There was one time, a few years ago, when I was managing my illness, but that did not last for long.

Much of the way people talk about diagnosing mental illness is extreme, prolonged change in what is normal behavior for you. You stop enjoying things you once enjoyed. Well, I have never really enjoyed anything on a consistent basis for more than a few days, unless it is a manic over focused phase.

Or you find your mood is either more manic or depressed than normal. Well, I rapid cycle, so my mood has never been stable for more than half a day. All the diagnoses talk about a person being different than who they were before.


Who was I before? Or, who could I have been had my illness not started so early? Could I have been a happy kid who was not afraid to leave her house? Could I not have been a germaphobe who has perfected the art of washing her hands in a public restroom and exiting a bathroom without ever having to touch the water handle or a door handle?

Reading this book got me thinking about how the time of onset of your illness brings with it different reactions in terms of loss of self. People who's onset is later in life, from what I have read, sometimes feel a loss of self, of who they were pre-illness. In my experience, when you have always been ill, there is a loss of self, but not a lose of who you were, a loss of who you could have been.

Blessings,

Rev. Katie

Yes, I Wear My Glasses

I just found a fantastic book about bipolar disorder. Seriously, go out and get the book now. It is called "Welcome to the Jungle: Everything You Ever Wanted to Know About Bipolar but Were too Freaked Out to Ask" by Hilary Smith.

Smith is a young adult writer with bipolar disorder who has an amazing truthful and witty writing style. I can't stop laughing reading her book. I will have a full review for you in just a few days, but I wanted to highlight one part of her book that I just love.

As I mentioned before, I am struggling with the fact that I have to take medication. In her book, Smith has a whole section about medication including talking about how so many of us don't want to take it. She gives great advice on how to combat our objections to medication.

At one point she says:
"Do you wear glasses? Do you sometimes go off wearing glasses for a month to see if your eyesight has fixed itself? Why not? Why is it easy to accept that your farsightedness is real and permanent, but hard to accept bipolar disorder? Can taking medication become as normal and acceptable to you as wearing your glasses?"


Well, I do wear glasses, I am quite blind without them. I have never "gone off" my glasses (unless I replace them with contacts.) How stupid would that be? I could risk seriously hurting people if I didn't wear my glasses and got in a car accident.

Not taking medication does the same thing. I seriously hurt myself and others when I don't take my medication and work on finding a mix that helps me.

Why does it take such a silly example for something to become so clear?

That is what I love about this book. It is full of glaringly obvious information that really, I should know, but it took her writing style to make it clear. Thank goodness for people sharing their stories in order to help others!

Blessings,
Rev. Katie