Wednesday, yes, I realize it's already Thursday, well in my time zone anyway....however today really hasn't "happened" yet even though I am up and about.
A med change....the cardiologist called me at work Tuesday, evidently whatever went on with my ticker over the weekend was not a good thing and really indicated the medication was not working the way it should have any longer...so we are trying the "next" med. My body is VERY sensitive to these meds, so we are starting out lower than the recommended dose. Before "we" realized this, I was on one that nearly put me in the hospital. I think if my GP had not intervened and demanded to speak with the dr vs the nurse it is exactly where I would have ended up. Thankfully, my GP knows that I know my body and knows when I say something isn't right and it must be the new med, generally, I am right. My cardio now knows the same about me...so we start out slow and gradually increase to try and avoid side effects.
I am thinking 24 hours into the new drug that I am not liking it, but I will give it one week. I go for another EKG next Wednesday. Off the flecanide I did sleep better last night and my breathing was easier, however, after three good doses of rhythmol, here I sit at nearly 3 am and I have been up with strange symptoms since midnight. My head feels like it is spinning, and it is worse when I am laying down. I guess I could sleep sitting up...but when I have tried that in the past, I end up sideways anyway. I've got some right side weakness too, so that is a little diconcerting, but it only happens with the dizzy spells...or loose brain attacks as we have come to call them around here. They are just more frequent now than they ever used to be. We are trying to determine if these are actually related to the heart conditions, or if the heart condition is in some way causing mini TIA's, or if this is totally a new, neurological issue. My heartbeat is definitely more irregular. Time...it's all a waiting game.
I have yet to sew this week, although I did put some lucious fabrics into my "cart" at Fabric.com while I was sitting here.
Yesterday the case manager called to "explain" about case management...it's ok dude...not sure we plan to keep you anyway...that is a whole other issue...I have a list of complaints to tackle with an Easter Seals supervisor on that one. I left him on hold because he called at work with a non-emergency question, and I had kids in the office to deal with. He was concerned I believe about a treatment team meeting we set up...w/o him. Sorry...the job wasn't getting done and I was having to be too squeaky of a wheel. I'm also tired of hearing that my son has too high of an IQ. I don't care how high his IQ is, if he can't function at home safely without 24 hour 1:1 supervision, then we need help. Autism is not a fun thing, couple it with bi-polar and it can be and often is unmanageable...add in a brain injury and it spells disaster in real life. Had we had the support for his autism we needed when we needed it w/o out the debate over exactly what kind of autism it was, w/o the arguement of school teachers trying to diagnose ADHD that is non-existent (it's the brain injury that causes those symptoms), and w/o the county trying to then blame his "symptoms" solely on the mental health issue, I am certain we would be in a completely different place than we are right now. He would probably be at home functioning pretty well with needed supports and his siblings wouldn't be afraid of him. They love him, but don't try to leave them in a room alone with him...they freak because of past experiences and then he freaks because they freak. It's a sour snoball effect. It's sad. He's trapped, and so are we.
The twins are still sick. I am not sure if we need to see the ENT or just a new primary care provider for them. This one keeps giving them zithromax and seriously, Anna now sounds like she is developing pneumonia. They are both still running low grade fevers which would go right along with the pneumonia theory for them. We cannot go 3 months without them getting sick and usually go through at least 3 different antibiotics before we see any relief and they usually miss at least a week of school each time. I will have to call the drs again tomorrow. Anna has been up twice tonight coughing until she tossed her cookies. It hurts. I know it hurts her, and it hurts me to watch her. I can't fix it.
Soon there will be an upper post....there has to be.....this is depressing me just reading what I wrote
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