A New Medicine Brings New Hope

I have finally found a new medicine that works.

 

Well, I think I have.

 

I started a new pill a few weeks ago. I was scared to start it. It can cause white blood cells to decrease, which would lower my fight against serious infections. These infections could be life threatening, or as my doctor said, lead me to the Intensive Care Unit. I don’t have time for that in my life.

 

To check my blood cells, I have to get my blood drawn weekly for 26 weeks to test my cell counts I’ve been four or five times now.

 

I have found that the phlebotomists are extremely skilled at their work. I applaud them. I could never be around the blood or needle, much less find the right vein. They haven’t caused me too much pain, which is all I can ask for. A couple of the weeks, I barely noticed he was done, or that she had even started.

 

There is a receptionist that knows me by name and always has a smile on her face. She makes the experience a little more pleasant.

 

I also have to go to my psychiatrist weekly for a while, until my medicine is at the right dosage and he is sure it is working.

 

I’m at 100 mg of the pill at bedtime, and am probably going to get up to 300 mg. We are working to get me from six types of pills to two or three. He has taken me off of my morning dose of an old antipsychotic and will keep decreasing it and other medications. I am excited to not be so dependant on so many medications.

 

I guess the most important part of the medicine isn’t the blood tests or the doctor visits. The best part of it is how it is helping me.

 

I haven’t been feeling the greatest lately physically, but my mental health is top notch. I haven’t felt this good in a long time. I think I am at middle ground. I’m not too high or low. I’m right where I should be. I haven’t felt this good in a long time, and I couldn’t be more pleased. I’d take middle ground over floating high or digging low any day. This medicine is honestly a life saver. When my doctor took me off my depakote and was a low dose of the new pill, I was in a terrible mental state. As I increase the medicine, I know that this is the right pill for me.

 

I am always afraid that the medicine will work for a while and then stop, like every other medicine. However, I think that those medications put me in a false positive that only lasted for a few weeks.I didn’t feel like how I do now, a feeling I haven’t felt in a very long time.
Here’s to hoping that all continues in a positive direction. Medication isn’t the only helper, but for me, this is what I need at this point in my life.

Am I Schizoaffective or Bipolar?

“If there were 10 psychiatrists, five of them would say you had schizoaffective disorder, and five would say you had bipolar with autism.”

This is how my psychiatrist appointment came to a close today.

My appointment actually went pretty well today. I didn’t breakdown, and I was completely honest. I’d say that those are two check marks on my report card in psychiatry land. My appointment had been set for this afternoon, but then got changed to 8:40 this morning due to my doctor having to switch his plans around.

I got to the appointment and was the second person in there. I had to pay today, which I normally don’t have to do. That was a little frustrating, as I had to learn how to use a card with a chip on it. It ended up being easier than swiping, so I was happy about that. I then sat down and waited.

Normally, I have to wait for a few minutes in the main waiting room, and then move to the comfy couch waiting room to wait for my doctor. Today, I didn’t have to wait with the comfy couch as I was his first patient of the day.

I went in, and he asked me all of the typical questions. “How are you?”, “How is your mood?” “Can you feel any changes from your medicine?” and so on. I answered as truthfully as I could.

He adjusted my medicine, increasing my newest one and decreasing an older one. We are working on getting me down to two or three medicines instead of six. That will be nice, not having to take so many pills a day.

I then brought up that he had put the wrong diagnosis o my check-out form again. He responded that I had to have my diagnosis say that so I’d be allowed to take the medicine I was recently put on.

I asked him if I actually had it, and he told me the statement at the beginning of this post. I wondered why that was the case. I guess every doctor has different views. I asked him if he thought I had it, and he stuck by his five this and five that answer, so I really don’t know what my diagnosis is.

It shouldn’t matter what the diagnosis is, but I would like to know. Maybe someday my doctor will know better and have better insight into my disorder. It would be comforting to have a name to my illness.

Schizoaffective or Bipolar, I am still the same person. I do want to know, but it doesn’t really change who I am. No label will define me.

New Medicine

It’s about to get real. I’m on my second night of my new pill.

Tomorrow morning, I have to get blood drawn. I’m going to have to get it once a week for six months, or 26 weeks in a row, and then every 2 weeks for six months.

Friday I have to go see my psychiatrist. I’ve been seeing him weekly for a while, but now I have a whole list of appointments set up. The reminders were handed to us like arcade tickets, accepted at an arcade where the prizes are medicines, and the queues are waiting room chairs. I also expect the phone calls two days before the appointment, where they say name name in an eloquent tone.

I’m not doing this because I want to. I’m doing this because I have to. The new pill I was put on is a last resort medicine when nothing else will work. I’ve tried nearly every anti-psychotic and the ones that are left are not much different from the ones I have tried.

My psychotic features have been getting worse, as has my mood symptoms. I have been having manic episodes more often than I ever have before My hospitalizations had stopped when I was 16 and started up again at age 16. As a 19 year old, I have had four hospitalizations between September 2015 and July 2016, due to either severe manic or depressive episodes, part of my bipolar disorder.

I’ve been on so many medicines, that my doctor decided to start me on the one I started last night. It is made to treat schizophrenia, but can be used to help with treatment-resistant bipolar disorder.

The blood tests are needed to make sure my white blood cells don’t drop too low. If they do, I could either catch a serious illness or even die. This is not a comforting thought, but hopefully the blood tests will catch it if it does happen. There is a very low chance it will happen. There are a whole slew of other side effects that could happen. That is why I need to see my psychiatrist so often, so he can make sure everything is going smoothly and adjust the medicine if necessary.

I woke up this morning feeling like I was filled with lead and had a head full of fuzz. I was tired all morning, but as the day I went on, I started to feel more alive.

I hope this medicine works, because I need some relief from my mental illness. I know the medicine isn’t everything, but it is a support. I have hope for the future, and hope that the days of a fuzzy head and a body of lead are soon behind me.

Here’s to hoping for the future.

Drugged Castle

My hands are weak

My mind is strong

Telling me

There’s something wrong

 

My eyes droop

My legs don’t walk

My mouth won’t close

But it won’t talk

 

My hope falls down

The bathroom sink

My brain sleeps long

Won’t let me think

 

The mirror shows

What I’ve become

Tries to add up

I have no sum

 

Let me fall

Into the stars

So I’ll black out

Beyond the bars

 

They hold me in

but let me out

I guess release

Comes without doubt

 

Someday soon

The drugged castle

Will wake me up

Make colors from dull

 

Hopefully

One day my pills

Get used to me

I pray they will

 

Medicine,Medicine

Medicine, medicine

Can you read my mind?

Will you change how I feel?

Will you be right this time?

 

Medicine, medicine

Will you make me well?

Will you keep me out of heaven

And change my course from hell?

 

Medicine. medicine

I heard you were the best

I wish it could be easier

No body checks and tests

 

Medicine, medicine

Please make my mind sane

I don’t need to be distressed

Please don’t keep me the same

Another Day, Another Appointment

I am tired.

I went to my psychiatrist appointment today, after going every week for about a month and a half. This was no exception. I went in to the appointment with a paper to remind me of a question my dad wanted me to ask. I also went in with my own question. That question was “Do I really have schizoaffective disorder?” I truly believed I did, but my parents suggested I ask to make sure.

After signing in, I sat down in the waiting room for all of one minute. I was the only one waiting. When I was called back, I got weighed and had my oxygen levels checked. My weight has been going up since I got off Adderall and was put on a medicine that made my appetite go up to high levels. I am not happy about that at all, as I am extremely self-conscious about my looks, especially my weight. It makes me feel terrible that I have gained so much weight, and I’m afraid I’m going to get to the point where I go back to my unhealthy eating behaviors. I’m trying hard not to.

The nurse led me back to the other waiting room. This one has a comfy couch that I enjoy sitting on. My appointment was scheduled for 12:40 PM and I like to be called back earlier than or at the time it is scheduled. I get nervous when he is late. That happened today, and I started rocking back and forth to calm down. He finally got me at around 12:55 PM.

I went in with my questions and prepared to answer the ones he threw my way. I told him that my new medication, Depakote, was working well. It really is, and my mood is getting more stable every day. However, the psychotic symptoms are just getting worse.

I asked him about the schizoaffective diagnosis, which he told me had been a mistake on his part and I was actually diagnosed with Bipolar I. The paper now says that my bipolar is mixed, severe, and with psychotic behaviors. I don’t believe my episode is severe, and am wondering if he put the wrong diagnosis. I doubt he would do it again.

Suddenly, I felt tears coming to my eyes. It started out as a sniffling soft cry and turned into me being a full blown sobbing mess. He asked me if I needed to go to the hospital, which I told him I definitely didn’t need to. Then he suggested a medication he called the “gold standard”. He explained to me that it was a medication that worked really well for psychotic and mood symptoms. However, it has many possible bad side effects. First of all, it can lower your seizure threshold. Luckily, I am taking two anti-seizure medications. It can also cause white blood cell counts go down. To check this, I have to get my blood checked once a week for six months. This sounds awful, but I’m willing to do anything to feel better. The medicine can also cause dizziness when standing, but I have that already.

I went to get my father so we could discuss the medicine with him. He said that it sounded good, and that the help it would give me would outway the bad. We also talked to my mother when we got home, who agreed with me and my father.

I have an appointment next Friday, and will most likely be put on the medicine. You might be wondering why I said I was tired at the beginning. I am sick at doctors. I am sick of medicine. I am sick of feeling the way I do. However, I know I need to deal with  all of this to finally feel better. If I give up, nothing will get better. So, I’ll keep on going to doctors. I’ll keep taking my medicine. I will keep working on feeling better, no matter what it takes.

Medicated, Not Weak

I take six different types of medication. That doesn’t include the two PRN, or use as needed, pills I have just in case I need to calm down. I know that many of you would be appalled at this amount. I also know that many of you are scoffing at me. “Six types? She has it easy”, some might say. Yes, I know I have in easy compared to others. Yes, I know that some people think that I am overly drugged. I also know that there is no “right” amount of medication.

At the very start of my journey, I was only on one type of medicine, once a day. I thought it would be that easy. One pill a day, and all would be fine. That’s where I went wrong.

Sometimes it only takes one dose a day for a person to feel better. For many of us in the mental health world, that is not enough. Yet people tell us all of the time that we are on too much medication, whether it be by social media or people we know in real life. I haven’t experienced too much of this, besides the occasional “He added you on ANOTHER pill?”. I often wonder myself if it was a bad decision to say yes to all of the prescriptions.

The other day, I was at my psychiatrist’s office and was answering all of his questions. I had been having a rough time and was telling him what was going on. He asked me if I wanted to add a small dose of a new medicine, or see if the increase I had done the week before would work anymore. I slumped over and told him that i wanted to do whatever worked. He decided to put me on the new medicine at a low dose at bedtime.

This added to my other five medicines. When I was with my old psychiatrist, she kept me on the same three pills my whole time with her and only very slightly changed them. She wanted to take me off of one of them, but my mother didn’t want me to go off of it because she kept trying to do it when some big event was happening.

When I went to my first adult hospitalization, they completely changed my medication, and told me that the doses my old psychiatrist had put me on were not even at therapeutic levels. I now had several medications, and the number seemed to go up, and then down, and then up again. At one point I was one seven a day, and different mixtures four times a day.

Now that I am at my current psychiatrist, he tries to change my regiment as little as possible. That ends up being quite a bit, but I am hoping that those days are over, at least for a while. I know I will have to change it from time to time, and that I am not completely ”cured”. I will never be cured. No mental illness ever goes away completely. For now, I’ll try to keep my medications stable, as I try to stay stable myself. I will probably have to stay medicated to rest of my life, and that’s okay. Maybe someday I;ll be on less medications, but maybe not. Whatever happens, I know that being on medication is okay. It doesn’t make me weak. It actually makes me stronger, because I am taking care of myself. Yes, we are medicated, but many of us are also alive because of it. It isn’t the only part of treatment. Therapy and other skills are needed. However, we need to do what is best for ourselves, and for me that is taking my medicine. It is okay, and I am okay with it.

Song Of Redemption

Sing me a song of redemptio

As I walk down that road

It seems so new to be traveling

Along one I walked so long ago

 

I’m running away from my past

A free spirit instead of a ghost

No more eating my insides out

Instead I watch as my flowers grow

 

I’m no longer a rooted tree

Yes, I have my strings in the ground

They are so long I can tumble

Away from the path leading down

 

The truth is I will have my problems

They will never not be around

They might swirl around in the darkness

But the light lets me not be bound

 

I’m happy for once in a lifetime

Or maybe just a few years

Either is better than nothing

My life is no longer just fears

 

Life will never be simple

But it can be more than just tears

I’ll raise my eyes to the ceiling

As we all scream victory cheers

A Great Psychiatrist Appointment

 

I just got home from an appointment with my psychiatrist. I haven’t been feeling the best lately, and was looking forward to this appointment. The coming date was nerve wracking as well.

Sometimes I see my doctor monthly, or every two weeks. Lately, I’ve had to go every week due to my mind being out of control, and his goal is to help soothe it. I’ve been having mood shifts nearly every day, multiple times a day sometimes. My hallucinations, as I guess they are,  have been getting more frightening with each one. Paranoia is attacking me, as I suspect I am going to be attacked by every person in the outside world. It’s been difficult to say the least, and this list is just getting started.

My last appointment with my doctor scared me. He told me he was going to add me on a new medicine he would have to have my parents approve for me to take it if my condition didn’t improve. As the week went on, I tried to make myself feel “normal”, and at times I felt just fine. I also had many mood shifts and things were not getting better some days. I was terrified of being put on this new medicine that sounded like it could cause some serious side effects.

I went to my appointment today. It didn’t start too well in the waiting room, where I was called back around 15-20 minutes late. That was stressful. After I got called back, I got was weighed and had my oxygen checked. I was thrilled to have lost some weight, as I have been eating a lot more lately due to my condition. Then I went to sit in the comfy room, as I call it. It has a big squishy couch that I enjoy to sit on. Then, my doctor called me into his office.

It started with me telling him how I was feeling, and what my symptoms were. We also talked about “Suicide Squad” which helped me feel a little more at ease. He decided not to put me on the scary medicine, but instead a small dose at bedtime of Depakote. I hope this will help.

When it was time to leave, I was told to come back in a week. I made my appointment, and asked for my visit summery so I could have my list of medicines. When I looked at it, I saw something I wasn’t expecting. I had a new diagnosis. There was no more bipolar 1, but instead schizoaffective disorder. Schizoaffective disorder has symptoms of both schizophrenia and bipolar disorder or depression. Mine is the bipolar type.

I was surprised at first, but then I thought more about my symptoms and realized that it could be right. I wish my doctor had told me he had changed my diagnosis, but I hope the new medicine helps with the mood swings. Maybe the new diagnosis will help figure out what I need in therapy as well.

Overall, it was one of the best doctor visits I’ve had. He listened to me fully, I tried to give a full explanation of symptoms, and admit when I didn’t understand my own symptoms. He even threw a little personality into the appointment.

Even though I was scared, there was no reason to be. I am not on that medicine, and I have a little more insight into the part of my that is schizoaffective.

Up, Down, Repeat

Having mood swings happen every few months, or even weeks, is not fun. Imagine having multiple mood swings throughout the day. This isn’t the same as feeling sad for a few hours and then being alright again. No, it’s not a mentally stable person’s mood swing. Yes others have switches in mood, but mine is a bit more than that.

Lately, I’ve been going through deep depression where all I want to do is, well…nothing. I have been getting physically sick, with head and stomachaches. I’m not sure if they are caused by my moods, but it makes me want to sleep all day long. Then, I get rushes of energy where I want to do everything and I can sing, dance, and do pretty much anything. This is my mania, or as I say, my highs, coming out. I feel confident and like I am the best person in the world. I hear voices during this point. It’s gotten worse the last few days. I go through bursts of believing I am in a coma and am trying to be awakened, and then I go through periods where I think I am stupid for thinking that. It is a really scary time for me

I told my doctor the other day about these mood changes. He said that it was like I never knew what I was going to feel at any given moment. This is true. I don’t know if I’m going to wake up and want to be busy, or if I’m going to want to go back to bed for a couple more hours. During the day, I don’t know if I’m going to do the dishes, build Legos, and write a few blog posts and poems, or if I’m going to once again sleep.

Night time is hard. Am I going to go to bed at 9:30 pm and fall right asleep? Am I going to go to bed at 10 pm and lay in bed for hours? Am I going to go to bed at 11 pm and then stay up and get 3 hours of sleep? Nobody knows. It’s like a carnival game. I hold the balls and look at the milk bottles, each one showing one of the options above. I throw the balls and I keep missing. Then the big man behind me makes the shot and that is what happens to me. It feels like I am not in control of my own body.

I try not to show my emotions, and I feel like i am doing a pretty good job. I can almost pass for normal, if there is such a thing. My insides are twisted up though, and I can’t untangle them. My gut that tells me what to do is twisted with my stomach causing me to eat as much as my body can handle. My heart either beats too fast or slows down. It combines with my lungs, trying to breathe normally, but they decide to let my brain take control. The brain controls everything, but my brain is in no condition to be a leader.

Hopefully the medicine increase my doctor gave me fixes whatever this is, and I don’t have to go on the pill that has so many side effects my parents have to approve before I can take it. I’m going to keep trying to take control of me. It’s hard when you are not in control, but I’ll try to find the reins and pull in my ornery little brain.