Sometimes it is hard to tell if I am coming or going. B’s cycles are so rapid in the past couple days that I feel drained. He is happy, then he is pissed, then he is crying. There are no obvious triggers, nothing helps him come down and he is just so angry. I know that my current back issues are bringing my patience level down and B has always been in tune with my moods and it is almost like he is reacting to my pain by showing his, if that makes any sense. More mom guilt, great. Sometimes it is just soo much, but enough whining out of me. It has just been one of those nights, so I am off to bed and will face another day with a positive attitude, as I have resolved to do. Tomorrow night B is staying with my friend so S and I can go see Kelly Clarkson in concert and I think the night out will be good for me. Gotta take care of the mom sometimes, right?
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! 🙂
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!!!
Merry Christmas Eve. I am totally missing my boys tonight. S is working til 10 (oh the joys of being management in retail). B is with his dad for the weekend because we had our Christmas last weekend with all the kids. I am happy that B is with his dad, step-mom and especially his younger sister (15 months) whom he adores, but I really miss him. It is funny that when B is here, things are so difficult, yet when he isn’t here, I miss him and feel a little empty. That is the way of the world I guess, we always want what we don’t have. However, I am focusing on the positive, I have a great son, an amazing fiance’, the love of lots of great friends and family, a good job, a roof over my head, two wonderful dogs and a fantastic future to look forward to. That is more than some people have and I am grateful for all that I have. Tomorrow S and I will spend the day with his parents and that will be really nice. Merry Christmas everyone, give thanks to God for what you have, as I am!
I decided to actually start my blog instead of always talking about doing it. My reason for doing so is multi-layered. First and foremost, to help me keep my sanity. Seriously, the last 13 years of my life have been more of a roller coaster than anyone can begin to imagine and you can only hold so much inside until you burst.
Secondly, if I can help even one person cope with having a child with a disability, then all my rantings, tears, laughs and moments of clarity will be worth it. **My disclaimer is that I am not a doctor, all I write here shall be my opinions and my perceptions on how things have and are happening. I may change names and places to protect those in my life, but all events, thoughts and happenings are as true as I recall them to be.**
Thirdly and lastly, I enjoy writing, so why not do something I enjoy while also getting out my emotions and the crazy description of that which is my life, while sharing for the world at large, or at least a few acquaintances crazy enough to read these posts? So hang on kids, it is going to be a bumpy ride for sure, but here we go!