Survival Poem

I am not dreaming

Of a hope-victory-life.

I am just dreaming

Of a hope-survival-life.

~

Yesterday my need was world-conquest.

I failed.

Today my need is my own survival.

I am failing.

Tomorrow my need will be a surrendered life.

I shall fail.

By: Sri Chinmoy

via Survival Poem — Sri Chinmoy Poetry.

Almost every day feels like a fight against that “surrendered life”. As I fight I try not to think about it, how that “surrended life” would look, dependency, poverty, SSI disability. Trapped face-to-face with the term second-class citizen, no transportation no escape. Perhaps sharing a room with someone I don’t know and have no interest in getting know-and then a succession of someones. The glance is so bleak only suicide comes to mind to comfort me. They do that-they do that all the time. That is how it has been.
Then on Monday-I started crying-because I knew everything was OK. More precisely because I felt everything was okay. For decades I lived in some state of anxiety all the time and even when inside my head, I knew everything was okay, my body and my emotions could never be convinced. We are tight, we are afraid, we are ready, it will never really be okay. Monday my brain said everything is okay and my body said yes, everything is okay and my emotional body took a deep breath and whispered yes, everything is okay. I cried tears of overwhelming relief. I think my new medication is working.
Diane

Quotes on Pain                           by: Sri Chinmoy

“Adversity makes you dynamic. Adversity forces your eyes wide open. Adversity teaches you the meaning of patience. Adversity endows you with faith in yourself. Adversity opens the secret door through which you can see the ultimate future fulfilment of God’s Will.”

“There is a general notion that if we go through suffering, tribulations and physical pain then our system will be purified. This idea is not founded upon reality.”

“To think that pain is a well-deserved punishment is wrong. To think that pain is an unavoidable heritage of karma is worse. To think that pain can never be surmounted is worst of all. Pain is a momentary experience of one’s limited self before it enters into the sea of Bliss.”

via Quotes on Pain — Poet Seers.

Right now I’m taking BuSpar for anxiety, Wellbutrin for depression, lithium to augment the Wellbutrin, stabilize my mood and rehabilitate my brain, Levothyroxine to augment the Wellbutrin, Metformin to protect my brain, Chlorpheniramine Maleate to sleep (OTC) and Cetitizine Hydrochloride for allergy (OTC), as well as melatonin for sleep, fish oil and vitamin D.  I quit taking my B complex because it makes me gag for some reason.  B vitamins have always made me gag and I finally decided that was a good reason not to take them.  I go on and off 5-HTP, Acetyl L-Carniterine with Alpha Lipoic Acid and St. John’s wort, they never seem to be particularly effective.  This week I’m in the process of lowering / eliminating the Wellbutrin and the melatonin in preparation for starting the Selegiline that I ordered from Mexico. 

            Four and  1/2 years ago, after going into yet another devastating depression, I was put on Wellbutrin by the Primary Care Provider of the year. ZIP, ZOOM, ZAP!!! I was no longer depressed! I was also no longer working-I was PLAYING!! -three months and a few (about 3) thousand dollars later, I came down to a ‘reasonable’ level and for the first time I recalled every bit (I think) of my-disconcerting is a good word, dis·con·cert·ed, dis·con·cert·ing, dis·con·certs

1. To upset the self-possession of; ruffle. See Synonyms at <embarrass>.

2. To frustrate (plans, for example) by throwing into disorder; disarrange.

-behavior. Upset the self-possession of / throwing into disorder/ upset the self-possession of /throwing into disorder/ upset the self-possession of/ throwing into disorder…shit and it really scared me.  Somewhere in there, I acquired an additional diagnosis of anxiety disorder and was put on, BuSpar. It took me another few months to admit the impact of the experience to myself and tell the Primary Care Provider of the year.  I got my long overdue, nearly 3 decades long overdue, bipolar disorder diagnosis.

            It was becoming the year of disconcerting experiences.  It was not okay for me to have a bipolar disorder diagnosis to ‘be’ bipolar.  In my mind that made me like, put me in a category with – my crazy violent father, the ex-boyfriend who kept breaking into my apartment and tried to choke me and all the former psychiatric patients, I had helped restrain and shot up with Haldol or some other highly sedating med to bring them down.  It could not be, but it was.

            That’s where the Lamictal came in.  I was prescribed the Lamictal to stabilize my mood, no more scary up, no more crushing down.  Quite simply, it didn’t work-or did it?  It’s like praying, can’t tell what would’ve or would not have happened if you hadn’t done it.  However, things did not get smooth and when the Wellbutrin was discontinued, I quickly crashed into another horrible depression.  I couldn’t even call for help until I restarted the Wellbutrin for about 10 days.  I continued to have intermittent hypomanic spikes that only lasted for a few days to a week or so.  I didn’t really have time to get into tooooooo much trouble.  I got my medical records and made a chart.  I still bounced up and down-all the time.  As far up?  As far down?  Who knows?  Overall-I felt less well than I had on the original  Wellbutrin and Lamictal combo.  Adding a thyroid med didn’t seem to make any difference.  The next time I became  horribly depressed we added lithium and that didn’t seem to make much difference either-it just made me so shaky I couldn’t use my cell phone.  We got it down to the 300 mg brain preserving dose I could tolerate.

            Then the primary care provider of the year went away, just as the primary care provider of the year before her had gone away-and I got a real Doctor!  This Dr. is actually an experienced specialist, and I am privileged and grateful to have him.  Value of hope.  He had seen miraculous results with Seroquel, so I tried it.  It is the best sleep med I’ve ever experienced, but I didn’t have a sleep problem.  It also had somewhat of a mind organizing quality, not dramatic but noticeable.  Although my mind certainly could use some organizing, I’ve never thought of its lack of organization as a particularly big problem.  I just compensate by organizing my environment to make up for the deficit.  I’ve gotten by pretty well that way from a very long time.  It did not stop the depression’s and I gained 35 lbs in two months!  The next time I took a big dive we tried the new SSNI (selective serotonin norepinephrine reuptake inhibitor) Pristique.  I had some reason to be hopeful about that.  It’s an Effexor spinoff and Effexor works well for my younger brother, who has a bipolar 2 diagnosis.  It flips him out of his depression the way Wellbutrin flips me out if mine-but it doesn’t keep him from becoming hypomanic and it doesn’t keep him from eventually going back into a depression, just as I do.  Pristique didn’t appear to do anything for me but like praying…  Then I ran into a glitch at the clinic, that I won’t go into (because I could rave on and on about the deficiencies of the clinic) where I couldn’t get the Pristique and had to be out for the weekend.  I had become increasingly forgetful to a frightful degree and was developing severe word finding problems.  I had been on line trying to find the source of the problem or some type of solution, when I started coming across multiple blogs by people on Lamictal-who were having the same problem.  I trashed the Lamictal and I decided since I already had to do the Pristique withdrawal I may as well trash the Seroquel also.  So I did. This may be evidence of my deteriorated mental state or just commentary on my way of doing things. 

            That was last April and for the first time in 14 years I became very scary suicidal. Part of my brain was thinking up painless ways to kill myself that would not impact other people while the other part was saying “BAD Idea! We need more meds! Go get more meds!”  So I went and told the Dr. what I did. He wanted me to go back on the Seroquel, but I refused.  I went back on the Wellbutrin.  It allows me to function most of the time.  To be continued, in three parts, this week.

What exactly do I do about my subjective distress, the extreme distress I have not been able to convey to the Dr.? I do exactly what I’ve always done, I do IT myself, and I do IT my way without regard for “the rules.” I got online to find out where I could buy medication I would like to try without a prescription. That would usually mean Canada or Mexico. I set my $59 to Mexico, I hope I get something in return, something other than a talcum powder capsule. Does that sound desperate? Then you’re beginning to get the idea. But it’s always complicated, always- always complicate. The medication I am currently taking needs to be washed out, that is discontinued for two weeks prior to starting the MAOI (monoamine oxidase inhibitor), to avoid possible serious hypertensive reactions. That would not be such a big deal except, right now, I feel okay and whenever I feel okay, the last thing I want to do is rock the boat. When and if that med arrives, I won’t dare take it until I start to dive again. It’s never been very long to that point in recent history, no matter what I’m taking. Of course, when I get to that point, two weeks with no medications and another two or three weeks climb to a therapeutic blood level will really be screwed-and what if it doesn’t work? Sometimes I feel like an angry victim of my biochemistry.
This is not the first time I’ve gone the do it myself route. Last time, by the time I ordered the medication the doctor had prescribed it. That was the Metformin. It is supposed to be protecting my brain. I’m really very fortunate to have the Dr. I have. He is not a psychiatrist, he is an internist, with many years of experience, who specializes in brain disorders – dementia, Alzheimer’s and who has written a book on bipolar disorder. When I’m depressed, I think I’m an especially big pain in the ass in my doctor’s mind, and he doesn’t like me. I think he’s going to tell me he will not work with me anymore, but of course he doesn’t. If in fact, if I’m hurting anyone, I’m hurting myself, not him. When I am not depressed, I know he likes me. He would probably consider me more interesting than anything else. Everything is colored like that when I’m depressed.
Today my anxiety is low. I look out at the plan for the day, and I’m just a little bit afraid I can’t do it. Other days I’m terrified and the more urgent it is that I get out the door, the more difficult it is.
I am better this week, much better. One of the barometers by which I gauge my mental state is the condition of my bedroom. It is the one area I will let entirely fall apart while I’m trying to juggle everything else. It is one place where I can just shut the door and it is like shutting the door on the condition of my mind. The bedroom has been a deteriorating mess for the past couple months, until the day before yesterday, when I spontaneously spent hours cleaning and arranging it. Now I can leave the door open, now it is okay to look inside my mind, like you are doing right now.

I’m having such a bad time lately, such a very bad time lately. I’m cycling so fast I don’t know if I’m coming or going. This morning I was driving around trying to get various works and errands done. I was perseverating on my latest trip to the Dr. It always feels like I’m spinning my wheels, wasting my time but more importantly like I’m just sinking further and further in. Into some bad bad place I’m never going to be able to get out of. I drive and think and cry because I feel hopeless, then I think some more and I am angry and say things inside my head I never say out loud. In my imagination I rail at the Dr. who doesn’t seem to understand, my rare hypomania is very unlikely to kill me but my depression is entirely threatening. I think about the people who threaten to kill themselves all the time, how I thought they were so full of crap, such a cheap annoying way to seek attention. I wonder if they didn’t spend a lot of time feeling the way I feel now-just more willing to make themselves heard.
I see pleasant old people and imagine they have wonderful memories keeping them warm and families and ties for comfort and a faith that gives them something to look forward to. I have none of these things and usually I can’t even be comfortable right now. A few minutes later I’m saying to myself, what is wrong with you? A terribly redundant question. There is nothing wrong right now. And there is nothing wrong for another 10, 15, 20 minutes, until some other cycle starts.

I told the doctor again, I believe I have a dopamine problem. I need a medication that kicks some dopamine into operation. I was saying the same thing to another “primary care provider” two years ago. He doesn’t want to give me a med that will do that. He is afraid it will make me hypomanic. He is however happy to give me some more seroquel, on which I gained 35 lbs in two mos. I wonder how happy he thinks I could be at 300 lbs, with diabetes and no hope of ever having a satisfying social life? I’ve never been arrested because I was hypomanic. I don’t believe I’ve ever been seriously hurt, because I was hypomanic. I’ve never hurt anyone else because I was hypomanic. What the hell does he think he’s protecting me from? It seems like he’d rather see me miserable, with my whole life crashed than take a chance I become hypomanic – which I become occasionally anyway. I have made no progress in my 4+ years of treatment.
I can’t do anything about that. But I’m still going to do whatever I can to help myself have some comfort in the rest of my life. It’s time to start concentrating on ways to enhance my dopamine level that don’t require a prescription or…
Angry, angry still angry…