Fingers Crossed

Josh had his physical today. We both love our doctor, he actually delivered Josh, so he's been in our lives a long time. We didn't see him today though, our appointment was with our favorite Nurse Practitioner. She also has cared for us both for years and she has a very holistic approach to medicine, always more apt to suggest a supplement over a pharmaceutical.

Anyway, I went in with Josh because I wanted to be sure the NP understood Josh's recent history. She was pretty shocked that Josh's thyroid levels were as high as they were upon admittance to the Psych Hospital, and yet nothing further was done in an attempt to ascertain if there was an underlying Thyroid problem.

She ordered further blood work, and because she felt Josh's thyroid was enlarged, she ordered an Ultra Sound on it.

As we talked with her, I became a bit more hopeful that Josh may not be Bipolar at all, that perhaps a hyperactive thyroid created a vicious cycle of sleep deprivation that led to the mania he experienced.

I feel like Josh having a thyroid problem and NOT Bipolar is kinda like winning the lottery. Not likely, yet.......if you read the symptoms of hyperactive thyroid and then read the symptoms of sleep deprivation (Josh had had only two hours sleep in a three day period when he became manic), it's very easy to get your hopes up. I mean, after all, SOMEBODY wins the lottery, right?

So we'll wait and see.

Josh right now has been totally himself, right down to being a bit short with me sometimes, bordering on rude. (No screaming and yelling, let alone pounding his fist or slamming a door)

He's still having trouble sleeping, but he's getting a solid 8 hours, unfortunately he often isn't asleep before 4 am, this morning when I got up at 6 am, he was still up. For now, his schedule allows this strange sleep pattern, but eventually he's going to need to get back on a more normal routine.

I look over the last year of Josh's life and can see how everything that has happened could be explained by a hyperactive thyroid. The thyroid controls so many functions and the hormones it produces are very powerful. I've said before that his eyes have bothered me for some time, his eyeballs seem to 'bulge'. This is a symptom of Grave's Disease and if you read the following link, under the heading of "How is the Diagnosis of Grave's Disease Made?", the second paragraph talks about 'clues' that might lead to such a diagnosis. The very last line talks about family members with related autoimmune disorders, such as I have....vitiligo.

My sister had a hyperactive thyroid, so there is family history, but the biggest factor to me is MY autoimmune disorder (vitiligo) that is known to cause blood relatives to be more prone to ALL autoimmune disorders.

And if you don't think sleep deprivation plays a part in all this, read this.

I may be grasping at straws, but I just keep coming back to Josh's thyroid problem not being addressed in the hospital.

So, we'll address it now if there is a problem, and then we'll wait and see if Josh shows anymore symptoms of Bipolar or not.

He's Baacck!

Josh is doing so well the last several days. It seems all his sadness is gone, he is functioning well, taking care of the things he needs to take care of. Hey! He's even back to ragging on me about everything, but only in the nicest way. He says his mind isn't racing and his thoughts are not at all disordered.

I'm not sure how long this will last, but I'll enjoy it while it does.

Today he told me, "It's kinda funny to say this, but I kinda hope I have a thyroid problem, I mean, who would wish for that?"

"Someone who knows the alternative is a mental illness. Weighing them, a thyroid problem would win out in anyone's book."

No matter how Josh's blood work comes back, I'm going to insist they perform a thyroid scan. There still may be traces of medication in Josh's system that could cause the blood tests to be skewed. I'm not taking any chances.

One of my girlfriends has an Autistic daughter. She gave me a book and an article to read the other day that pretty much says that there is no such thing as Autism, or ADHD, bipolar or schizophrenia. According to these professionals, all of these conditions have a biological basis; heavy metals, hormone imbalances, etc.

They propose that if you look, you can find an underlying condition and treat it, and they say that most doctors just aren't trained in these areas, that they are so busy running their practices that they don't take the time to fully explore ALL other possibilities before attaching a label.

I suppose there is something to all this and I imagine, over time, this field of study will probably advance and gain more support.

She has encouraged me to meet with her daughter's doctor for a full work up, just to see what MIGHT be out of whack. I haven't discussed any of this with Josh yet, but there is a lot of information out there that points to the fact that many people are misdiagnosed as Bipolar, but are really suffering a thyroid problem, so we'll start by ruling that out.

Giving Back

You know, I have gotten so much out of the local DBSA Support Group meetings I attend every Monday night, but sometimes being able to give back can also help as you cope with this thing called Bipolar.

My sister, who lives out of town, called me early one day last week on her way to work.

"Melody you HAVE to go out today and get this book I'm reading. I noticed it last night on a display table of recently released books (she works part time at Barnes and Nobles) so I bought it and brought it home. I was exhausted last night, but I thought I'd read a few pages before I fell asleep. I couldn't put it down. It's called "Welcome to the Jungle...Everything you ever wanted to know about Bipolar, but were too freaked out to ask." The author was diagnosed at 19 and she's probably in her early twenties now. Anyway, it is written for young adults who are newly diagnosed, it's the book she says she wished someone would have handed her when she was newly diagnosed. I really like the way she writes about this Melody, and I think Josh has GOT to read it."

So I stopped at every bookstore I came across and a few I went out of my way to go to, that day, but the book had flown off all the shelves. (My sister said that when she went to work a few days later, the nine copies that were on the display table when she bought hers were gone.) It's interesting that a book about Bipolar would fly off the shelves, but that seems to be what happened in all the bookstores around me.

Anyway, I ordered three copies of the book and went home and downloaded it onto my Kindle. It took me about two hours to read it that day, and my sister was right, Josh NEEDED to read this book.

It's written by Hilary Smith and it is a gem of a book. First of all, it covers EVERYTHING about this disorder, and it's important to note that it covers things a young adult would be interested in knowing about, in addition to the more practical things. Basically she says, -Yes, it totally sucks that you have this horrible disorder that has no cure, and you're going to have to manage it the rest of your life, but you get to choose how you let if effect your life. You can fight against it, or you an learn to manage it. You can let it destroy your life, or you can have a great life in spite of it.-

I think if I were Josh's age, this book would be indispensable, but I also think that anyone who is parenting a Bipolar child should read this book. It helps you understand their mindset, the REAL things that are going through their minds at a time like this.

The book is funny and hip, written in a vernacular that would appeal to this age group. A few of the reviews of the book on Amazon mentioned that the book had some curse words, and yes there are a few, even the 'biggies' appear here and there. I cuss like a sailor, so that doesn't bother me, but I could see that it might offend others. This book is valuable enough in its content to be worth getting over that little thing though, if you're inclined to be offended by cussing.

And Hilary doesn't seem to be afraid to mention the word 'crazy', a word many people whose lives are affected by Bipolar tend to tip toe around. The fact of the matter is that Mania? With delusions? Ummmm, call it what you want, but it sure looked crazy to me, and I found it refreshing that she writes about it in the way she does. And because she's Bipolar, she can get away with it.

But mostly, I felt this book would be so empowering to someone in Josh's shoes.

I picked up my three copies the other day and gave one to Josh, then last night I took the other two to the DBSA Support Group Meeting to leave in their Lending Library. Last week during announcements, I mentioned this book and let everyone know that I had ordered two copies for the group.

There are several young people who attend our meetings and I hope that they take the time to read this book because I think it has such a powerful message. The group leader told me that she had downloaded it on her Kindle after I mentioned it last week and that she was looking forward to reading it and having her daughter read it.

I really wanted Josh to read it, but he had been so resistant to even discussing any of this that I wasn't sure how to GET him to read it. I have a long time online friend who has been very supportive since Josh's diagnosis. He suggested that I pay Josh to read it, so that's what I did. At this point Josh has read about half the book. When I gave it to him, he was still deeply in denial, but agreed to read it, but he was also in a slow thinking, foggy place and he's found it hard to process anything; reading being difficult for him.

I know he's gotten a lot out of the book though, because once he started reading it last week, he began asking questions about things he's said in the past that were delusional, etc. His speech became peppered with some of the things Hilary says in the book, and for the FIRST time, he began his sentences with things like, "Since I'm Bipolar" or "Now that I have Bipolar".

That is HUGE, and I really think that even though he hasn't finished the book yet (and not gotten paid!), he's already gotten a lot out of it. I have a feeling that this is a book he will turn to often for years (hopefully when he's considering doing something boneheaded, like going off meds or dropping acid).

One of the things he asked me last week was whether or not he is going to have to change his career plans. He has struggled trying to decide what course of study to follow in college and over the last month or two, he seems to have settled into Psychology.

"Mom, now that I have Bipolar, am I even going to be able to get licensed as a therapist?"

"Gosh honey, I don't know. Let's see if we can find some information about that on the internet."

None of our searches turned up any information, (I SO suck at Google searches!) so I said, "I know! We'll email Peter (Josh's therapist) and ask him."

Peter responded immediately, "Josh can be almost anything he wants to be in the Mental Health field."

So this book has clearly already had an impact on Josh and he hasn't even finished it yet. I have a feeling that I've left a couple of real treasures in the DBSA Lending Library. Treasures that will hopefully have a positive impact on many lives for years to come.

And that my friends makes me feel a gazillion times better, because sometimes, when life hands you something really shitty to deal with, the best thing you can do for yourself, is to reach outside your pain and suffering and offer a hand to someone else.

The Realities of Hospitalization

When Josh became manic, I didn't even know he was manic. I didn't know what manic meant. If I'm being honest I would tell you that I came home and found Josh acting nutso.

Ahem.

Anyway, long story short, off to the Psych Hospital we went, with me encouraging him the entire way that this was the right thing to do.

And he'll probably hold that against me the rest of my life.

It was not a good experience for him, but I've come to realize that Mental Institutions aren't a good experience for anyone.

It seems the goal is to bring em' down or lift em' up, begin a medication and get them out of there in a perfectly timed maneuver that has them walking OUT the door at precisely the moment their insurance stops paying.

Unfortunately, fiscal concerns determine the level of care received, and the hospitals aren't driving the bus, the insurers are.

That's a fact.

A sad fact.

In addition to that, there is very little competition to force better care. We live in a fairly large metropolitan area and I can only think of maybe four Psychiatric Hospitals in a 50 mile radius.

Mental Institutions are pushed up against a wall to make a profit, so things like, oh...communicating with caretakers, falls by the wayside, as does educating caretakers.

Seriously, Josh came home with a prescription and a piece of paper that explained side effects to watch out for and a notation that he had an appointment the next day with some dude. I had no idea what the dude's purpose was, just that Josh was to see him.

I also didn't know what to expect in the coming days. I wasn't prepared for his rages, or disordered thinking. I didn't know what my JOB was.

A simple pamphlet could have alleviated some of the missteps I made over the first days and weeks. A one page sheet of paper could have imparted much needed information.

Because in the end, Josh's best interests were not served by the lack of communication and education I received from the hospital...which was zip.

Another aspect of Hospitalization where mental illness is concerned is that the person in charge of making decisions and asking the right questions (the patient) is temporarily incapacitated mentally! Add to that the fact that historical data about past episodes and behaviors are being collected from someone who thinks he's a messiah put here to spread the truth, and it's pretty evident that THE DOCTORS SHOULD BE TALKING TO SOMEONE WHO ISN'T SUFFERING A MENTAL BREAKDOWN!

Even though Josh had signed a release so the doctors could talk to me, even though I left messages asking the doctors to call me, they didn't.

Because time is money.

So basically, they can prescribe whatever they want cause they know the patient isn't capable of any input into the decision.

Josh NEVER wants to go to the hospital again, and I don't want him to EVER have to go to the hospital again, but when you're in a state of mania, your options become limited.

It's just possible that if hospitals were able to provide the necessary level of care, communication and education that this Disorder requires, then repeated hospitalizations may not be needed, thus saving insurance companies money in the long run.

If a patient could stay in the hospital long enough to become stable, go on a medication that a loved one helped choose after discussing side effects, lifestyles and past behaviors, and then went home with a caregiver who knew what the hell was going on, the cycle of non-compliance could be shortened.

I'm just sayin'

Knowledge is Power

When Josh landed in the hospital and the man who had evaluated him opened his mouth and said, "Your son is in a mild manic state and from his history, it's clear that he has Bipolar Disorder," I was too exhausted and frightened to fully get the gravity of the diagnosis.

Oh, I knew it was bad.

I remember standing and talking with a teacher on Field Day when Jordan was in Elementary School. For some reason, this woman shared with me the story of her son, who was what was then called Manic-Depressive. Unfortunately, it was a fairly typical story of a young man who struggled against the Disorder and lost his battle with it at the age of 24 by killing himself.

I can remember so clearly having the sensation of this woman's pain pouring over me in waves.

So, I knew it was bad.

But I really knew nothing at all.

I now know more than I ever wanted to know about this Disorder, and I'm pretty sure I'll never stop learning.

The internet is a both a blessing and a curse when researching something of this nature. There is a wealth of useful information to be had and what you read there can scare the holy crap out of you.

I visited message boards and forums and the stories I read kept me awake at night, it seemed like everyone was so badly affected by Bipolar. What I quickly realized though is that the people who are posting on message boards fall into one of maybe three categories.

1. People like myself who are new to the Disorder and are seeking help.

2. People who are struggling with the disorder and are seeking help.

3. People who have the disorder and have no intention of addressing it properly, but want to whine.

The fact of the matter is, that for the most part, people who are struggling post on message boards. People who have control over the disorder and are living perfectly normal lives, thankyouverymuch, are out living their perfectly normal lives and not posting messages on boards and forums.

So keep that in mind when you are searching for information. Don't be discouraged by the dearth of happily ever after you read there.

While searching for information about various medications, there are horror stories aplenty too. Because these drugs affect everyone so differently, it can be disheartening to read about other's experiences with side effects and withdrawal symptoms. It is beyond alarming what some people have been through on the journey for the right combination of medications.

It didn't take me long to decide that I needed a book. A good book. A simple, but thorough book, and so I headed to Borders.

I came home with a book that I felt was appropriate to the situation, "Bipolar For Dummies", because I definitely qualified as a Dummy on the subject.

As a starter book, I would highly recommend this one. It covers all aspects of the Disorder and has a section for Caretakers. It is very technical in explaining the Disorder and I completely understood what "happens" in the Bipolar Brain. Granted, I couldn't explain it to anyone else if my life depended on it, but I understood it as I read it.

The book was copyrighted several years ago, so the information may not be the most up-to-date, but I still think it provides a good jumping off point in the quest for Knowledge.

Next I contacted the local chapter of The Depression and Bipolar Support Alliance: DBSA and I began attending Support Group meetings.

This was a difficult step for me to take, and I hate to admit it, but it took me several weeks to make that call. And another week to actually attend a meeting. It seemed like stepping across that threshold was me acknowledging the reality of Josh's illness.

Yes, even parents have to work through denial.

If you're faced with a diagnosis of Bipolar, get over your denial quicker than I did, because the help and support you will find at DBSA will be invaluable to you. I actually look forward to our Monday night meetings.

Once I'd armed myself with knowledge and support, I realized that I didn't have a clue how to actually deal with my son on a day to day basis.

All of a sudden this son of mine was completely unfamiliar to me. He was unstable when he came home from the hospital, and while the medications had brought him down from his high, his disordered and occasional delusional thought processes were something totally new to me. I had no idea how to communicate with him.

At a time when I REALLY needed to be able to communicate with him effectively.

Josh displayed HORRIBLE rages when he came home, all directed at me. Anything was liable to set him off. One day he was sitting in my office talking to me and a bird flew by my office window. In a natural response to peripheral movement, I shifted my eyes to the window. Josh jumped up, pounded his fist in the middle of my desk hard enough to make things on it jump, and screamed at me, "Pay attention when I talk to you!" Clearly I'd done nothing 'wrong', but in his mind I was Satan incarnate sent up from the bowels of hell with the express purpose of infuriating him. His rages could have been induced by the medication, irritability IS one of the lovely attibutes of Bipolar Disorder, but some medications ramp it up a notch, to one notch just below homicidal.

So I learned. Slowly. Over WEEKS.

The problem was that everyday, a different version of Josh climbed out of bed. What worked yesterday in that mood, inflamed him today in this mood.

I'll save anyone out there who is dealing with a newly diagnosed Bipolar person some time and tell you a little secret. No matter what, stay calm and agree with everything they say.

OK, so I hate to admit this too, but early on I would make matters worse by arguing with Josh and occasionally I got downright mad at him.

Who wouldn't? Seriously?!

It takes time to realize that this person in front of you HAS NO CONCEPT OF WHAT THEY'RE DOING.

Oh, you know it on an intellectual level, but it takes real effort to remember that in the heat of a very violent moment.

The truth is that stress is one of the worst things for a Bipolar person. Stress builds and builds and builds inside them, and can send them directly into a manic state; do not pass go, do not collect your Seroquel.

So for days, maybe even weeks *shudders* I made matters worse for Josh, and myself, but I learned. Eventually I learned.

I learned to agree with anything he said, "Yes, I'm the most horrible parent in the world, I don't know how you've lived with me all these years, and yes, I need therapy and probably a parenting class or two."

But the biggest thing I learned was to let go and let God.

And God seems to be doing a pretty good job of handling this, because yesterday? JOSH climbed out of bed. My Josh. The one I knew before that awful man in the hospital uttered those words, the one I knew before depression settled over him like an early morning fog, the one who used to be happy and surrounded by friends, rushing here and there, living a busy, fulfilling life.

It seems the medication has quickly worked its way out of Josh's system and, where he was slow and foggy, he's sharp and bright. Where he was sad and desolate, he's happy and hopeful. He's not the slightest bit manic and his thought processes seem to be in good working order.

Today while I was out of town, Josh went out to play baseball with two of his OLD friends. You know, the friends HE pushed out of his life way back there when he was depressed and on the way to suicidal. And as I type this, one of those friends is in his room with him, doing what they used to do...play a video game.

The most difficult lesson I've learned though is that tomorrow is a complete unknown with this Disorder, especially at the stage of acceptance that we are in.

We aren't treating the Disorder at all at this point, although Josh is being very careful about his sleep schedule, because for him and many who suffer with Bipolar, sleep deprivation is a one way ticket to Mania City.

Josh could be fine for days or months, or possibly even years before the monster rears it's ugly head again. And Josh could wake up TOMORROW headed towards a manic state.

So I've learned to take all this one day at a time, appreciating the good days and looking for more lessons in the bad ones.

Because in the end? I'm just about all Josh has right now and I don't intend to let him down.

Semantics & Stigma

One of the first things I learned about Bipolar Disorder is that many people who have it can be pretty touchy.

They'll nicely tell you that there is a distinction between HAVING Bipolar and BEING Bipolar. They HAVE Bipolar, they are NOT Bipolar.

They would take exception to the very name of this blog for example, citing that it indicates my son IS Bipolar, where they would rather I refer to my son as HAVING Bipolar.

I get the distinction.

Just like I HAVE Glaucoma, I'm NOT Glaucoma.

While some people who have Bipolar can get almost militant about this distinction, I've made it pretty apparent right up there in the title of my blog, that I'm not gonna spend a lot of energy worrying about the semantics of all this. Hell, I KNOW the difference between there, their and they're, yet I often times, in my stream of conscience writing, grab the wrong one of them from my brain and throw it on the page. AND DON'T CATCH IT WHEN I'M EDITING!

What it all comes down to is there is such a stigma attached to mental illness and people who suffer with mental illness have the distinct pleasure of having to also suffer with the stigma connected with it. They don't want to be defined by their disorder. I don't want my son to be defined by his disorder, but I think there are much better and more powerful ways to reverse the stigma of mental illness than to get all pissy about semantics.

Since my son's diagnosis, I've learned more than I ever wanted to know about mental illness, bipolar for the most part, and I've developed a HUGE amount of respect for the people who suffer with it. I mean NO disrespect by the title of my blog, or how I might phrase a sentence.

What I hope to accomplish by maintaining this blog is to chronicle our journey and hopefully help others who are navigating through the maze of Bipolar. And I hope that in some small ways I can help lift the stigma attached to Bipolar, but I don't believe for a second that the stigma is worsened by simple semantics, there are much bigger issues at play.

So Here We Are

Today I sat down with Peter, the therapist that Josh had been seeing before being hospitalized. Peter has been very helpful to ME as I've moved through the past few months trying to deal with something I have no knowledge about.

Bipolar.

Specifically, I need Peter to help me in guiding Josh toward mature responsibility. Not just responsibility surrounding his disorder, but his long standing life issues; his inability to just basically get his shit together and act like a 20 year old.

I made headway this week during a discussion with Josh about his need to contribute in some way to the running of this household. He does basic chores if asked, on occasion without being asked, but he has a sense of entitlement that needs to change.

On the one hand Josh insists on being treated like an adult, because hey! He's 20 years old! But often his behavior is more akin to a 12 year old. I've been encouraging him to get a second job since he sat out a semester of college due to his depression. Well, it's about time for college to start again and he still has one job that offers him less than 20 hours a week. There's a whole lot of time in there that he needs to fill.

After much discussion we agreed that he would clean the house each Friday in lieu of beginning to pay me a nominal amount of 'rent'. His brain is so fuzzy right now though that he asked me to text him each Friday morning to remind him to clean the house.

Peter and I agree that baby steps are in order. The one thing that someone dealing with Bipolar needs to avoid is stress. Stress builds and builds and sends someone with Bipolar into a manic episode.

So tread lightly.

Peter and I talked about the discussions that Josh and I have been having where I feel he is leaning more towards acceptance. Peter feels that I am handling those discussions very well, acknowledging how difficult of a diagnosis it is to accept, and stressing the importance of management as the key.

Peter feels that Josh's questions regarding past delusional episodes, and his recognition that he was likely a bit delusional when talking with his friend one night, are all great indicators that he's really beginning to 'see' the truth.

Josh has been extremely flaky today. We went out to dinner and when we returned he told me he was going to smoke pot.

My stand on pot? Well, I'm not gonna sit here and lie and say I've never smoked pot, or lie and say that when I did smoke it I didn't inhale. Personally, I wish they'd legalize the stuff because then the product that our kids would be smoking would be controlled and safer, there would be tax revenues, and if you think for one second that you can control it's use by keeping it illegal, you're nuts.

Do I want Josh smokin' pot? I honestly can't say because I've read such differing views on the subject of pot and bipolar. I think that's a heavy subject for its own post in the near future.

I can tell you this much. The problem with pot is probably twofold. It affects everyone differently and each medication differently and the quality of pot and what it might be laced with is a concern.

And I'll also tell you this. After Josh smoked tonight, he joined me out on the deck and he became increasingly 'sad'. He said he feels like he's a shitty person, that *I* think he's a shitty person. And while his anxiety level was a little elevated all day, he became more and more anxious as the evening wore on. But the interesting thing is that HE noticed this himself.

His anxiety took MANY forms tonight. He's worried about his thyroid, had me pull up a picture of it on the internet. Then he was concerned that the benadryl he was taking to help him sleep was SO little it would get stuck in his throat because his throat hurts and he thinks his thyroid may be enlarged. And he's almost sure he's all of a sudden allergic to his contact solution because his eyes look weird to him and in fact, last night he got some contact solution on his finger and it burned.

It is almost midnight and he's having a hell of a time getting to sleep. I taught him how to belly breath, because he's SO anxious. I finally said, "Go lay down, put on some soft music and belly breath...just concentrate on your breath."

Sheesh, he's wearin' me out.

The fact of the matter is, and I told Josh this, the last eight weeks have been hell. For both of us, but mostly for his poor brain. It's be inundated with all manner of drugs. Sedatives, sleeping aids, this dose of medicine, NO, this dose, NO this dose. Sheesh, no wonder Josh is a walking buffoon.

"I think you'll feel less foggy in a week or so, once all these chemicals are out of your brain, and then we'll see what happens."

And today, while sitting on the front porch with me, Josh looked at me and said, "Well, what are we gonna do if I get bad again?

"You mean like manic?"

"Yeah"

"Well, I don't know. I talked to Patrick today about the Psychiatrists in his office, and that's an option, but he also said they have a Clinical NP who is very good, a little less expensive and he felt she might be a good fit for you, so you should think about if you'd like to see her, or one of their Psychiatrists sometime soon, so they know you, you are under their care, and then if you become manic, we have someone who can help us out."

Josh and I both are having fasting blood work done next Wednesday, ahead of our Physicals which are scheduled for Monday. I will go in with Josh at the beginning of his appointment and discuss our concerns with the doctor. I told Josh that I want him to listen as I talk to the doctor so he can learn to communicate effectively with the professionals in charge of his care.

"It's going to be very important that YOU learn how to ask questions and even challenge the doctors. If they suggest something you don't understand, ask them to explain. If they propose something that you're not comfortable with, ask them what alternatives are available. YOU really are in charge of ALL the decisions about this, but you have to be able to be an advocate for yourself."