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Hump Day

I wonder who came up with such a name for Wednesday?  Someone who had a lot of time on their hands, or someone with a deluge of phrases to coin and no where to use them?  Just a random thought I had.  

     Anyway, today we go for B’s fist one month med check with his new psychiatrist.  My opinion, along with S’s and all B’s service providers is that he has done really well in he last month since being taken of his Lithium at my request.  I firmly believe that med was doing more hard than good.  His rages are lower in both numbers and frequency, and he seems just the slightest bit happier on some days.  This new doc also split his Abilify (an anti psychotic  med) from 20mg in the am to 10mg in the am and 10 mg after school.  This could be another reason for the calmer nights at home.  B’s Adderall and Clonodine were left the same.  Now don’t get me wrong, it is not all roses and crumpets.  We still have our daily struggles and some OCD tendencies have gotten worse, with a few new ones appearing (the doc warned me this could happen if he stopped the Lithium).  We still have a few major issues to deal with, but learned to celebrate every small victory and getting him off the Lithium is one in my book.  My say tonight will be to go another month as we are now, not giving a med for the OCD stuff and seeing what happens.  None of it is enough to be effecting his performance in school and we can handle it at home, so I would really love to not have to introduce another drug into his body if we can help it.  I will, however, listen to what the doctor says with an open mind because he has the degree, but I also am the mom and have a say which I love about this doctor.  We shall keep our fingers crossed and see what happens..

   As for my ailments, after many months of testing with no results and me being on the verge of thinking I was having phantom pain and becoming crazy, I have a diagnosis.  Four or five herniated discs in my lower back and a narrowing of my nerve canal in my spine, otherwise known as spinal stenosis.  I am not sure why it took so long to diagnose, because now that I know the symptoms of that, it describes all my pain to a T.  Of course the solution is never easy, as we have to jump through insurance hoops, but at least I know I am not crazy and there is actually something causing all the pain I have been experiencing.  So for now, it’s continue the nerve blocking meds that I have been on since October (that I hate), start physical therapy next week, see a Neurosurgeon on February 2 and go from there.  Probably looking at Cortizone shots at some point and if all else fails back surgery, which I do NOT want, so I will do whatever else they tell me to do to avoid that!

   So our lives are quite full with appointments right now between B and I, plus S and I both working full time and me tutoring a few hours a week.  Never a dull moment in his crazy house and I wonder, why does he want to marry into all this??  Oh yeah, cuz S is amazing and loves B and I with all our flaws and craziness, something we have never had before and let me tell you, it is a terrific feeling!  I am the luckiest girl to have two such amazing men (well OK man and pre-teen) in my life!  See, staying with my resolution of being positive! 🙂

New and Old

Happy 2012!  It is with trepidation and hope that I enter this new year.  My hopes?  That maybe this is the year we figure out just the right combination of meds, therapies, hormones, and life for my son and we get to reap the benefits.  Most importantly, we get to see what it is like for him to feel “normal” if there is such a thing, to fit in, not to be so angry and emotionally skewed.  That is something I have longed for for more years than I care to count.  The trepidation, we don’t want to get our hopes to high.  Never too many expectations, especially during puberty.  It all takes time to work together.  It is difficult to find the right combination of things to help your son.  This is something he will never outgrow, but he can learn to live with/handle it better…can you tell I am quoting things I have been told over the years?  I will never give up hope, but neither will I be unrealistic about where things could end up.  It is a daily struggle for me to stay positive and not think of the negative “what ifs”, that is what many people don’t understand.  As B gets older, the results of his rages and outbursts get more serious and God forbid he does some of the things he does at home in public…his therapist who knows him well and who started seeing B four years ago, right after he attempted suicide for the first time, has told me that if B behaved in school or public the way he does at home and with his service providers, he probably would have already been placed in a residential setting.  Welcome to one of my worst nightmnares, just below physically losing him for good.  Hence, my trepidation.  However, we have come this far and made some progress, so my resolution is to do my best to stay positive and in the worst of moments, remember that they aren’t the worst.  It could always be worse and someday it might even be better.  I also resolve to embrace the good times, the smiles, the moments of seemingly “normal” times when all is right with our family and there is no fear, anger, hurt, or anxiety.  I will keep you posted as to how these resolutions work out.  Luckily I have an amazing fiance’ who is here to kick my butt when I get too down and remind me of the positives when I forget.  That can be the difference between a I can’t take anymore and am breaking down night or a relatively insane but I am keeping it together night. Sometimes that line is very fine!!!

Do You Hear What I Hear?

   That’s right, nothing.  The boy is finally asleep in his bed after a day of more cycling  (Bi Polar, not biking unfortunately) than I have seen in a very long time.  I know this is due to the fact that we are mid way through weaning him off a heavy med, but holy shit was he exhausting today!  I kept him home because he had stomach cramps and a headache, side effects or basically withdrawal symptoms and I figured he could use it.  He did need it, but it was exhausting for both if us. 
    At one point he was rolling on the floor screaming because his underwear wasn’t right and he had to keep adjusting himself.  This is an ongoing problem, probably part of the OCD that they are telling me he is showing me more and more signs of.  Of course because I am the mother and he is the 13yo who knows everything, all the suggestions I made to try and help him were stupid and I was dumb and I never understand, or at least that’s what I think he was yelling at me…it was hard to distinguish the words from the screams.  This lasted fifteen minutes or so and then he was fine, like nothing ever happened.  That is the hard thing about his rages and we talk to him about it all the time.  Once he comes out of it, he is fine and often doesn’t even remember what he did or said.  Those of us who witnessed it or were targeted in it are still reeling and need much more time than him to calm down and not take it to heart and then he doesn’t understand why we are upset.

   So we went awhile without incident until I mentioned the homework he had to do with the tutor this evening.  Well, I might as well have said that he had to cut his own hand off.  He screamed and yelled and ranted and raved for a good half hour, though nothing got thrown so that’s a positive thing.  Sad that I can determine a bad rage from a good rage, but that is just our life.  Others who only see my “Jekyll” think I am crazy or exaggerating when I describe these things  because they just can’t fathom it.  I guess that is a good thing, as I would not wish this on my worst enemy.  
    We made it through the rest of the day with only minor issues and he did go with his tutor and get all his work done and we were able to have about an hour of quality time before he went to bed.  When he asks me to tuck him in (which he still does every night and I am grateful for that) and gives me a hug and tells me he loves me, I know it is all worth it.  Easy?  No.  Frustrating as hell?  Yes.  Exhausting?  Yes.  Worth it to have the wonderful, brilliant, beautiful boy that I have?  Yes.  I love him with my heart and soul and would never change him, I just wish I could take his pain away.  Maybe someday, but until then, I remain the rodent and he remains my Jekyll and Hyde.