Why do they have to make it so hard?

Josh was referred to an Endocrinologist by our Primary Care Physician.

No one mentioned how difficult it is to get an appointment with an Endocrinologist.

I was given three names and checked with Josh's insurance company to determine which doctors were in his network. I then called to schedule an appointment.

Sheesh!

You can't make an appointment with any of these doctors without first having a years worth of medical records sent to them so they can determine the urgency of care needed, but the real kicker is that once they receive the records, the first available appointment isn't until mid to late September.

This was the case with all three doctors I called.

It seems to me that they're going to need not only Josh's records from his Primary Care Physician, but also records from his IOP at the Stress Center back in January, AND his records from the Psych Hospital.

By the time they receive all that information, I imagine the September appointments will be filled and we'll be looking closer to October.

And in all of this, there is an issue with Josh's Student Aid for the Fall Term. We have to present documentation from a physician stating that Josh is OK to attend school in the Fall. The problem is that Josh isn't really under any doctor's care right now. The student aid office doesn't know that he has been diagnosed as Bipolar, they are concerned with the depression that caused him to fail out of last Fall's classes. This documentation needs to be to the Student Aid office by the 14th of July. We were hoping that Josh's Thyroid tests would come back and indicate an underlying Thyroid condition that we could state we were treating.

Josh and me have an appointment with his therapist, Peter, this Wednesday. Peter is willing to compose a letter that explains the situation; that Josh recovered fully from the depression, became sleep deprived that resulted in a manic episode, whereby he was diagnosed with Bipolar. But then it gets a little tricky. We are not treating Josh's Bipolar at the moment, so Peter is going to have to dance around a bit, stating that Josh is functioning well right now and will treat any further episodes, if they occur, as needed.

Josh has FREE money available this year, for the first time, and I hate the thought of him losing out on that. He has decided to start back to school in a very cautious manner, taking only three classes. While he hates taking such a light class load, he understands that he needs to avoid stress. I told him that he could catch up during the summer session, but that since we really don't KNOW what might happen; he could experience more Bipolar issues, that a cautious approach would be best.

Worse case scenario, I will have to pay for his classes this year and I hate to do that since I have spent so much money on his medical bills this year. I don't think it is in Josh's best interest to sit out the Fall Term. I feel strongly that he needs to 'get his life back' because it has spiraled horribly out of control over the last year. Some normalcy would be good for him and he needs to be working towards a goal and school would force him to get on a healthier schedule.

In addition to the medical issues he is facing, his employer (a national chain) is close to bankruptcy. He may not have a job for long and they have cut back every one's schedules to the point that Josh is working only about 10 hours a week. Jobs are hard to come by though, especially with the college kids home for the summer. Josh's older brother has been unemployed now for a year and a half and his unemployment benefits ended three weeks ago. His brother is in that first wave pool of people who were laid off, so there will be a glut of those people whose unemployment benefits have ended, who are aggressively seeking any available opportunities. Which means it will be even more difficult for Josh to find employment.

Added to my financial woes is the fact that for the first time EVER, Josh's brother has had to ask me for money, and I'm sure his needs will continue.

Right now everything, every aspect of our lives, is in flux and that's a very uncomfortable position to be in. Josh could experience Bipolar symptoms at any moment, or he could be fine for years. It's hard to know WHAT to do because nothing is a given, so we'll just have to take things as they come, deal with the issues in front of us each day and be frugal as hell because everybody is in my pocket right now.

Sigh.

Not Good News

Josh's thyroid blood work and ultra sound all came back normal.

Sigh.

The doctor has asked that Josh see an Endocrinologist anyway. She is still concerned about his elevated levels upon admittance to the hospital.

Josh is NOT a happy camper.

Neither is his Mom.

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.

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."

Josh Comes Home

Originally posted to my private blog on May 4, 2010

As experiences go, having your child in a Psychiatric Hospital has not been the best.

Because the unit he is on does not allow visitation, I've had to gauge his condition via phone calls between us. And his mood has been all over the place.

The only information I have been able to get has been from the nurses (limited) or from Josh himself, and he's not been forthcoming with much information.

I was told that the doctors on the unit RARELY make phone calls to family members.

So you have a loved one suffering from a mental disorder and you can find out NOTHING about what is being done for him, how he is responding to treatment and no one can answer the many questions you have.

I am frustrated.

Josh is frustrated.

And more than ready to come home.

Last night when I talked to him he was in a very 'crabby' mood.

His complaints were:

"I trusted you and look what you did to me by talking me into signing myself into this place.

"It's like being in prison, do you know what that's like Mom?"

"I'm having terrible mood swings, have you ever had mood swings Mom, it's awful."

"They don't really care about information around here Mom. No one really cares."

"I feel like shit now, I felt much better the day I came in here, at least I was happy...euphoric!"

So that's the child I'm picking up today.

I'm sure he's more than ready to get home, but I have no idea what life is going to be like. Early in his stay he was on board with NEVER being in a manic state again; would do whatever it took to avoid it.

Today I'm not sure if he really WILL stay on track with medication and lifestyle choices that he needs to be on track with.

I'm scared. I've tried very hard to remain positive and hopeful, but today and tomorrow are full of unknowns.

I've read until my eyes blurred gathering information on the subject of bipolar disorder and how to help as a caregiver.

In all I've read, I keep uncovering information regarding thyroid conditions often being misdiagnosed as bipolar. Articles I've read state that BEFORE medication is started, all underlying biological causes need to be addressed. It seems that if a thyroid condition is identified, IT needs to be treated first, because medications for bipolar disorder can mask symptoms.

I could get no one at the hospital to discuss this with me. They tested Josh upon admittance, his thyroid levels were extremely high and he has most of the classic symptoms of the disease. They began bipolar medications and two days later retested his thyroid and all levels came back normal

Their diagnosis? No thyroid problems. Bipolar.

They are sending all of Josh's test results home with him and my hope is that he will agree to see an endocrinologist to determine whether or not his thyroid is overactive.

All I know for sure is that I'll be there for Josh anyway that I can, I only hope he'll make the best choices for himself.

Day Two

Originally Posted on my Private Blog (edited to assure anonymity) on April 30, 2010

It is so hard to sit here, all alone, and not know what is being done for Josh. He isn't able to give me much information and the nursing staff dispenses just the basics. You begin to wonder if anything is being done for him.

Well, apparently, he is in very capable hands.

I spoke with the nursing staff at the hospital this morning and they said that last night Josh's blood pressure was elevated and it was a concern that they addressed. This morning his vital signs were normal. She said he was quiet last evening and kept himself pretty much isolated.

I know my child, and I know that he is spending his time analyzing all that has transpired.

His Social Worker called me this morning to exchange information. I told her the history of his depression, the medications he had been on and stopped taking cold turkey and his general emotional state, including the pain he feels surrounding the relationship he has with his Father.

Then she had a lot of information for me.

First of all she said that Josh is very remorseful about the poor medical choices he's made for himself. "I think this was an eye opening experience for him, winding up here, and he's so intelligent, he understands now that he needs to give up control, at least for a while."

We discussed, and she will discuss with him, the importance of letting me dispense his medication and she said that she overheard him tell another patient that smoking pot is just not an option for him ever again. (It messes up the delicate balance the medication is maintaining.)

We discussed aftercare options and she said Josh will need to be under the care of a psychiatrist the rest of his life. "It's important that his medications are closely monitored and that he has ongoing support to deal with the practical and emotional issues of this disorder."

In the end we agreed that the Mental Health Facility that is on the hospital's campus would be the best option. "They have more extensive services available than any facility in this area. They run support groups and have complete inpatient and outpatient programs like the one he was in at the Stress Center. (And it's a five minute drive instead of a 30 minute drive, which will be important down the road. I want his care to be convenient for him so he'll maintain it.)

I told her my concerns about the side effects of the medication they have put him on. It can affect your blood pressure, blood sugar levels and liver function, among many other very scary things. "Will they be doing regular testing for these conditions?"

"Not usually, but what they will do is educate Josh for the signs to look out for, and you too. Like excessive thirst, etc. Now, we do a complete screen on all our patients when they're admitted, and that's the other thing I want to discuss with you."

"Josh's thyroid readings were quite high, so we've called in an internist to work with us on addressing that. This condition can be responsible for many of the things Josh has experienced. Trouble sleeping, depression, anxiety, etc."

She felt Josh wouldn't get released over the weekend, "They rarely discharge from the units on the weekend, and while Monday would be the typical day for him to go home, with this thyroid condition he may be here a day or two longer so we can get that stabilized."

I asked if he would need to be closely monitored when he came home and she said she didn't think so. "We'll know more about that as we get closer to his discharge."

She's going to discuss the Mental Health Center option with Josh and ask him if he feels like he'd benefit from being in their IOP when he's released.

I'm still waiting for a call from the Psychiatrist who is caring for him. I've compiled a list of questions for him so I'll be prepared when I speak to him.

I felt so much better after talking with the Social Worker, she was amazingly warm and knowledgeable and I felt, for the first time, that we can manage Josh's condition. I also realize what a big role I will play in this child's life as I help him navigate through all this.