Release The Sanity

Thursday, December 15, 2005

In the past few days I have opened my creating post to write, always shutting it back down because the things I need to write about I'm not comfortable with. I'm still not and probably won't open too many doors here right now. There are two reasons for this. One, facing reality of the last few days is _______. ( Insert every fearful, sad and overwhelming word in the blank. I came up with too many to choose one or two, so I'll leave it blank. Secondly, this is still the internet and I don't know how easy it would be for the wrong people to find/enter my blog.

This is difficult for me because I want to write WHATEVER I want to write. It feels so good to just type what is on my mind. I find answers that way. Yet, topics in here especially details have a cautionary edge to them.

I could write my own blog without anyone having access but right now it feels healthier to do it this way. I think having my friends see it keeps me somewhat grounded. I have too many fears right now and could really comfort myself in a personal blog which would really only untimately serve my depressed ego but there would be a great violin solo in the background.

Right at this moment though I feel like I should be starting a project which would require a personal blog. B is trying to cope with something that only 1% of the population experience. Just knowing those stats makes you feel very alone with what you are dealing with, it also makes me feel very alone knowing only 1% of mothers and fathers can relate and truly know what we are going through.

In all my research to date on this illness I primarily see how to treat it with meds, how the patients are either much sicker in time or even better to the point the people wonder if they were misdiagnosed. What I haven't seen much of is the road the family walked through the course of this illness. Much focus, rightfully so, is on the patient but it seems family coping get lost in the mist. I have experienced this the most not so much on the internet but from the clinic directly. I basically had to beg to get information so I could understand what was going on and how to be the best support I can be. I don't want to hear anymore how busy everyone is. This clinic is in the top 5 and was at one time number 1. But, for myself and anyone going through this I want to raise awareness for the families, which ultimately helps the patient directly. I have a ton more research to do I know I haven't even tipped the iceberg on information that is out there BUT so what if it's out there if you can't find it. I don't need to know anymore the basic description of this illness which every stupid webpage has and they don't seem to dig "much" deeper than the basics. I want the clinic to HAND me book and say "read this" because this is your bible for survival and survival of your loved one. I need it to be that simple. I can't tell you how many hours I have wasted trying to find the information I'm seeking. Only last night did I finally find a webpage that gave deeper insight into what I'm looking for.

What I don't get... How can you be the so high on the excelling ranks as a research facility and NOT have made your own books to give to your clientele? It took me a month of daily searching webpages to even understand, truly understand the BASIC concepts of this disease and quite honestly I know I still don't really have a grasp on it. Often, someone will ask me a question about it and I have to say, "I don't know, I don't get it."

Generally it's hard to fully understand something if you haven't experienced it. And, to me that is why it is so important to make informing the family number two on the list for recovery. Obviously, taking care of the patient is number one. If I understand how and why my son is thinking the way he is the better I can ease him back to thinking the way he should. If I can recognize the little signs that something isn't right then I can interject and possiblily and quite easily prevent something extremely dramatic happening later. ( Like what happened to B in the last few day) as we talk about it there were signs. And I STILL feel like they aren't listening to the signs. Because the signs to me are saying B's meds aren't right. He himself with his own words are the signs I'm talking about. Saying things like, "My anxiety meds are working well enough" or "I feel funny at night" or "I just don't feel right" or "I don't feel comfortable in my own skin" HELLO HELLO HELLO so what do they do... Increase his meds. Now quite honestly, if they saw this they would have more to add, I'm sure there are things I don't get and other points to be raised in the formula BUT right now with my simpleton little mind I hear something I think needs to be heard. THE MEDS AREN'T RIGHT.

I can relate to that feeling. But, I'm sure B is feeling it to a greatly greater degree. When I was 19 I took an anti-depressant called prozac to help get me though a tough time. I had a month supply with intention of if it worked staying on for a few months. After two weeks I quit taking it myself because without having words to explain the sensations I had... It just "DIDN'T FEEL RIGHT AND I DIDN'T FEEL COMFORTABLE IN MY OWN SKIN" I didn't need to be a genius to realize this medicine was making me NOT feel like myself and there was something wrong with that.

I have recently began looking at other methods of treatment for B. Or methods additional to meds. More unconventional methods. It seems that anything aside from popping pills in the U.S. is considered unconventional. I don't have a problem with modern medicine really. I think some pills can really improve the quality of someone's life. I just think it's used automatically, too quickly, too often and sometimes in too high of a dose. There was not any discussion whatsoever after B was diagnoses to talk about options. We were given two options. Take meds and basically have a relatively normal life or don't take meds and conditions will get much worse.

I don't know, I just want him to feel right, get better, be happy and start living his life again. I feel helpless because I don't know what the right thing is to do. Maybe the meds are a lifesaver for him, maybe they aren't. I just don't know. I want to know.

One thing I do know is there has to be a lot more to this disease than is being reported. They've only really been able to tap into this disease in the last ten years, time and funding needs to catch up. Fast!

Posted by FieldsOfJoy :: 9:47 AM :: 0 comments