Tuesday, July 22, 2014

Not A Passive Aggressive Letter To My Sister

This post is not passive aggressive, other than in the obvious way that I am posting on a blog instead of talking to someone in person.

This is to my sister (not the one in the hospital).  I told her that I was not going to write another blog post about her and at the time I said it I had no intention to do so.  I am going to switch it up here and write an open letter to my sister.

Sister when you were last at my house you brought up a blog post that I had mentioned you in.  It was from quite a while ago and was surprised that it affected you that it was still in forefront of your mind.  When I sat down this morning to write a few things that had been simmering since your arrival and departure into and from the city of salt, I wanted to communicate with you and it seemed obvious that it should be a blog post because it gets through to you.

My first impulse was to dissect every slight and wrong that I felt you had committed and get deep down into the semantics and have a really satisfying fight/argument with you in a public forum so neither of us can place a spin on the results.  I did indeed write two blog posts prior to this one that were angry and full of detail and then all of the sudden I wasn't angry anymore.

Dad is dead and mom and I are not far behind him.

I have to prioritize now and being angry with you is a waste of time for us both.

 I do not know you very well.  I am six years younger than you and was only twelve when you escaped our family.  That is how I think about you going away to college when you were eighteen and I am in no way implying that is how you feel but that is how I felt/feel.

As adults I would not claim to know you, that does not mean I do not love and care about you as my sister but we have not had a relationship as an adult.  From my perspective this is not an attack just a statement of fact.  I will not assign blame as to the who or why that is the case just that it is the case.

I love to exaggerate to tell a humorous story, I like to see people smile and feel like I am a positive part of their lives.  I do not exaggerate about my health, in many ways I am still in denial about how the illness has effected me and that being said when I talk about my health no matter how bleak I am sugar coating it for myself.  I do not know the a word that means the opposite of exaggerate but that would be what I do about my health.

We are not close, you do not share your secrets with me and I do not share my secrets with you and neither of us is going to live long enough for that to be the case but what could happen going forward is we set aside our preconceived notions and stop expecting each other to understand the meaning that is implied by the words we say, we do not know each other well enough for that.  Lets treat each other like the strangers we are, I am not angry twelve year old and you are not a awkward eighteen year old theater geek.  That is what we where the last time we were together for any amount of time, that was thirty years ago and I am thinking we both might have changed since then.

Tuesday, July 15, 2014

My girlfriend is not in a coma but my sister is in a psychiatric hospital

I have talked about my sister being in the hospital before but I have never come out and said it, my sister has a mental illness.  I have been aggressive in my stance that mental illness should be treated like any other illness and that there should be no stigma associated with it.  Funnily enough I have never mentioned that my sister has been not in a generic hospital but a psychiatric hospital.  I have gone into great detail about my illness in hopes of helping others but I would not mention that my sister has a mental illness, that would have helped others, maybe more than my regular ramblings.

When someone has a serious mental illness psychiatrists, especially psychiatrists at in patient hospital, want to treat that mental illness with drugs until the person is able to function "normally" on a day to day level.  They are not real concerned with quality of life.  I have experienced this same phenomenon with my own doctors, they see a serious physical illness and they want to treat the illness to make sure I stay alive for as long as possible and often regardless of my quality of life.

I know that when I bring up quality of life issues with my doctors we can have a conversation.  Some doctors are willing and engaged to converse about quality of life and some are not but they will at least have the conversation.  I do not know if that is the case for people with a mental illness.  Can someone with a mental illness say I would rather be crazy than deal with these side effects, can they say that their quality of life is so diminished that I need to try other therapies for their mental illness?  I have a feeling that those requests may be brushed aside because after all the person is mentally ill and can they really judge what their quality of life is?

My sister demonstrates a pattern among many people with a mental illness, she does not like to take her meds.  This happens with other diseases the most famous example I can think of is Steve Jobs rejecting the medication that was suggested for treatment of his cancer.  That being said it is more common in the realm of mental illness.  My sister has bipolar disorder and in order to treat her bipolar disorder successfully she needs to take some drugs that are heavy duty and have serious and unpleasant side effects and periodically my sister decides not to take those drugs.

I understand all of this on an abstract level but on the concrete level of day to day life I am angry.  All though I preach that mental illness should be treated the same as any other illness but I still think couldn't my sister choose to hold it together at least until my dads' estate was closed or Hell maybe until I die?  Stress takes a toll on my health in real tangible ways and doesn't my sister care about me enough to hold off on being crazy so I could have less stress?  I know these are all bullshit questions and my sister does not choose to be mentally ill but she does make a choice not to take her meds.

What weight should I give to my sister not choosing to take her meds?  When she is on her meds should she be held accountable for choosing to stop them?  Is she herself enough when she is medicated that I should be angry with her?  I do not know the answer to these questions, Hell for all I know these questions are all rhetorical and I am too stupid to realize it.

When my sister was in the psych hospital either last year or the year before I was talking to her on the phone and I was angry and I asked why wont you take your drugs, your choices impact people that care about you and I worry about you.  She told me I did not have to worry about her anymore, that she had relieved me of all responsibility.  Is it bad that sometimes I wish I could just not worry about her?

All I know is that my eyes are heavy, heavy even though I am taking pills to treat narcolepsy.  I am sad, I am worried, and I feel the weight of the situation.  I have not talked about it much in this forum but I have had a decline in my health over the last few weeks or maybe two months or so, it is hard for me to judge.  I can feel the stress take away energy, energy I probably never even had in the first place, energy that is probably just an illusion from my narcolepsy drugs and you know what?  It was a shitty illusion, I did not have much energy even in the illusion of the life I lead.

A friend of my sister and my other sister have handled the situation this time and I know it is out of kindness and concern for my health that I am kept out of the minute by minute play by play of her illness.  Silence gives you a lot of time to worry, I worry about my sister and I wish she was well.

Wednesday, July 9, 2014


Below is a link to an article written by a wife of a sick man.  I imagine my wife feels some if not all of what she is talking about and I hope everyone that reads this would remember that care taking is harder than being sick.


Tuesday, July 8, 2014

Visit to the neurologist

I made an appointment with my neurologist with the specific intent of discussing my cognitive issues. I had been on an increased dose of prednisone for the month preceding my appointment with the neuro man. Non nuero symptoms of a various and sundry nature "necessitated" the increased dose.  Little things like trouble breathing, trouble walking, trouble standing (vertigo).  Prednisone needs no introduction so I shall just say this, it never helps that much but it helps some and that is more than any other drug I have tried.  I have mentioned it in other posts but I shall just say this, even though I already said I shall just say this and I am aware that I am now saying more than just this do not side track me and let me spit it out, prednisone is a harsh mistress and after a short time she will always turn on you.

I have blogged about that in the past and if you have a hankering for more in depth complaining about prednisone feel free to check out those older posts but really just trust me it is pretty gnarly and sometimes miraculous but mostly gnarly.

Anywho when I got to the appointment I was not firing on all cylinders but the engine was running on the starting fluid called prednisone and my cognitive impairment had improved. Wow I really like making car metaphors, I am thinking that I may go for a simile next.  Car similes sound really tasty.  Back to the story it is hard to measure and find the cause of cognitive issues when they are not happening so we started talking about pain and then fatigue and one thing lead to another...

I had already been taking Modafinil for my extreme fatigue upon the recommendation of a doctor that although she is not considered a sarcoidosis specialist from my experience I would say she is and if nothing else she is the closest thing we have in Utah.  Well anywho you can take 400 mg of Modafinil a day but from the studies that I and the sarcoidosis specialist were aware of indicated there was no benefit in taking more than 200 mg a day.  Boom goes the dynamite the neurologist is like yeah there is no benefit in taking 400 mg all at once but there has been studies that show if you take 200 mg in the morning and then 100 mg in the afternoon it can give you a little extra boost and hopefully increase that elusive quality of life.

Is there a moral to this rambling tale of drugs and sickness?  Not really, well maybe a little bit.  First the extra 100 mg in the afternoon has helped, not like I had hoped but it did help.

Sidenote:  I think I am going to stop hoping and go full zen and just let it be.

Sidenote to the Sidenote:  No drug I have taken has worked like I have hoped, another reason to go full zen.

I was going to cancel my appointment with the nuero man since I was not having severe symptoms but there were several positives that came from the visit.  Quality of life, it did improve, not a whole lot but at this juncture every little bit helps and he also laid some knowledge on me.  Some of the knowledge I enjoyed learning and some made me sad, it is hard when your body betrays you.

The neurologist helped with the fatigue and he also stuck me with needles in my feetsees to see if I could feel it.  I was disappointing to hear him say that he had stop because he was going to break the skin, thus indicating I had no sensation in my feet.  He then moved my big toe on each foot up and down and asked if I could tell whether it was going up or down.  I apparently have also lost a great deal of my ability to tell what position my toes are in.

My initial thought was why do I care about toe position?  Apparently your brain uses the information from your toes to help keep you upright.  This combined with the damage to the nerve that carries information from my ear to my brain causing vertigo and together it is difficult to stand and not fall over and then add the fact that I can not tell where my toes are it is amazing I don't fall down even more than I do.  What is the positive from all that?  I learned the word ataxia, well not that positive because I have it but I do like new words.

In the end never give up hope but never be too hopeful.?!