NOT KNOWING

Today is Friday and I had big plans for myself.  Well, nothing really exciting. I was hoping to go to the Ladies Fellowship Thanksgiving Dinner at my Church tonight.  I don't know if I am going to make it.  It started on Thursday morning but I ignored the symptoms.  I went to the Coumadin Center to get my INR levels checked and they were high.  It was the prednisone they told me.  No problem they adjusted my coumadin levels and I am to go back in 8 days.  Still I am ignoring the symptoms because I want to feel good.  (But I can feel the heavyheaded feeling coming, the confusion is starting.) I get to my neuro.  While waiting for her to come into the examing room I begin crying and twitching.  She walks into the room.    After everything calms down she examines me. Ahhhh, Haaaa, she says, in her adorable Russian accent.  Now I see, something is off. My reflexes are not right. I cannot walk right. She finally sees my seizure in action.  My blood work shows that she cannot increase my seizure meds.  She wants me to see the Head of the Epilepsy Center at the hospital to see if he can recommend different meds.  She makes the referral.  We talk about a SPECT Scan and a lumbar puncture.  We agree to do a scan first and then if warranted a puncture later.  A puncture is to invasive.  Especially since I am on coumadin. Too much prep.  We talk about APS and how I have read that how if a person is on coumadin that symptoms should disappear.  She tells me that this doesn't happen all the time.  She tells me that I have to understand that APS is a relatively obsecure disorder and that there is not much known about. (Like I haven't read all of this)   It's only been known about since the late 1980's.  She told me to look at it like this.... A diabetic and insulin........ sometimes it works....... sometimes not.  Some diabetics have what is called insulin resistent diabetes.  Makes sense and makes me feel better and not like a crazy lunatic.   Of course she tells me to hang in there.  They all tell me to hang in there.  It's easy for them to say that.  It's not their brain that is slowly losing the ability to function.

Well anyway, my brain is hurting this morning.  Last night while trying to do my meds with my husband I just lost it.  I could not concentrate.  I could not remember what was what.  I sat there looking at all those pill bottles and drew a total blank.  I just started crying.  It's such a scary thing to not know.