Tag Archives: Lupus

follow-up doctor today

I had a follow-up appointment with my neurologist to get the results of my EEG that I had last week.

They have the battery of questions regarding mental health, one of the questions was “Do you feel safe in your own home?”.

My response, after a hesitation that got me a raised eyebrow… “no.  No, I don’t.”

The nurse asked me to explain, so I talked about David.  The events, not just those of last evening, but for the last 8 months.

So a notation was made about this.

Any way.  Back to the EEG results.  The results are “normal”.  No sign of a seizure disorder.

The reason I am having some of the symptoms that I am having is the Neuropathy.  It isn’t a diabetic neuropathy, the is related to my Systemic Lupus.  So, the neuropathy is making itself known in my spine.  Hard to define a long term prognosis, but we will get through.

Remember, every day is a good day.

struggling and happy 3 month anniversary

This post isn’t so much about David as it is about me.  See for a long time, David was in a safe place.  A place where I didn’t have to worry as much.  I could get the weekly reports, I could talk to David, I would take the interceding calls, that told me of some… Continue Reading

the degradation of a boy’s mental health

I post frequently about the things that David does, and the things that we deal with.  You really need to know, I don’t post everything. It is sad to watch the gradual decline of a person’s mental health.  His mental stability.  For so long, everything was fairly smooth.  It’s just in the last couple of… Continue Reading

I now pronounce sentence. 72 hours and a prayer

The appeal to Medicaid to further fund services has been denied. As a result, I will be picking up David from the facility on Monday.  We then come home to begin a new chapter in our lives as a family. We had an IEP meeting for him this morning. Short term he will be homebound… Continue Reading

Annual Christmas Letter and Appeal

Greetings friends and readers. It is with all the joy in my heart that I wish each of you a joyful holiday.  One filled with acceptance of the differences we see in others.  One where our children know how much love we feel in our hearts for them. It is tradition in our home to… Continue Reading

Off Close Watch

David is off close watch. They moved him off the lower level of the residence, and to the main floor.  This allows them to keep a closer eye on him. I miss the little guy. I advised staff that we need to ensure that we are looking at his meds.  While not a cure, they… Continue Reading

thoughts for today, tomorrow, the future

My goal is to raise awareness. Please, if you read my blog, share it with others. Our beautiful son is not the only child who is struggling with mental illness. There are others out there. So please, share my blog with others that we might work together to raise awareness. Awareness begins with one voice and builds steam from there. I know quite a few parents who have been fighting for their children for a long time, far longer than we have been fighting for Marc. Voice’s get tired. People get tired. So let’s rally the troops.

Mental illness encompasses a broad range of things. Each mental illness is important.

Thank you again for your support. It means the world to my family. To me. Continue Reading

At a loss, with tears rolling.

Dad’s are supposed to be able to fix things. I can’t fix this. I can’t undo the damage caused by a selfish woman who did not think of her unborn child when she proceeded to get herself loaded up on drugs. Continue Reading

update – positive news

Staff called tonight. David was in a good place to talk to me tonight.  When he is manic, it just isn’t a good idea.   David addressed his concerns. Doesn’t want to be there for another 6 months to a year. Thinks that he is being lied to. Doesn’t understand why we aren’t coming out… Continue Reading

an update. close watch again

David is on close watch again.  He is under the belief that no matter what he does there, he is going to be moved to another facility. But that is not entirely why he is on close watch.  He is on close watch because: he climbed to the top of his closet and hid there.… Continue Reading