update...

A few weeks ago, I was at my son’s martial arts class and his instructor asked me how I’d been feeling. I told him that the doctor thought I had lupus and that I was doing alright, I didn’t have a lot of energy, wasn’t feeling real well. He told me all about how important what I eat is, I agreed- he also said the power of thought is enough to cure anything, even cancer. I walked away feeling as though he was telling me it was all in my head. Like I had the ability to tell whatever it was to just “go away” if I tried hard enough and believed.  I was kind of irritated.

Well my appointment on Wednesday was, well, interesting. Went in, the doctor looked at my blood results said the marker the indicated I may have lupus was in fact, very low. He said my symptoms were what alerted the doctor to send me his way.  The rheumatologist took a good amount of time and examined me, my motion, places that hurt, talked about different symptoms, different problems I’ve been having, etc.  He was somewhat puzzled as well.  He said that we definitely have something autoimmune going on-  so we’re doing more blood tests to get more answers there. However, there is another cluster of symptoms that tell him my problem is more specifically neurological. He said “we need to expand our range of diagnosis to include some pretty serious problems…”  Well, that’s reassuring!

I spent the last month preparing myself for the “bad news” of lupus.  I mean it’s not the end of the world but it can be pretty scary. Now I’m looking at something way broader.  He is sending me for a brain MRI and to a neurologist.  He suspects I have lesions on my brain.  Tried “googling” it and decided it was not in my best interest to do so. 

I’m jumping between emotions here- trying to be optimistic, but scared when he said “serious” I think he was reluctant to actually specify how “serious” this could be.  I’m hoping, praying, etc.  I realized on my way home from his office, there are two things that terrify me, more than anything.  First being not seeing my children grow up, or at least not being in the right mental state to really understand or be involved.  Second, I don’t want to be an embarrassment or burden on my kids.  I read that a lot of neurological problems are degenerative.  I’m 28 years old and I already feel 80, how much more degeneration is there going to be?  I’m not trying to jump the gun.  I guess I just don’t want to pretend like nothing is wrong and go in there and be floored with the results. 

Richard and the boys went on a trip to visit his parents this weekend, and it’s so quiet here.  I realize now, just how much those little boys of mine keep me going.  I’ve spent most of the time on the couch watching old episodes of Medium on Netflix on demand.  I don’t have energy but normally I’d have to push myself to make them lunch, to tie a shoe, to find a missing sock…  I don’t know, they have this magic ability to make me feel “normal”.  I can’t wait for them to get back, and to greet them with hugs. 

The rheumatologist prescribed me xanax, because my brain is sending the messages to my body that trigger anxiety responses. My muscles tighten up, my heart starts beating fast, it’s hard to explain but he was right when he saw it, I hadn’t even realized. There are times I literally am holding my arm down thinking “Relax, relax!”  The xanax is helping with that, it’s also making me relax more all together.  I still feel lazy, not being able to do anything, on the bright side, I don’t beat myself up as much! 

Next week, I have to call the doctor’s office and find out if the insurance approved my MRI, if not I have to go to the Neurologist first, and have that doctor order it. So we are still at least weeks away from any kind of answer.  So I feel like I’m here, stuck in limbo, I’d love to go do things to take my mind off of it but I just don’t have the energy. 

I guess my son’s sensei was right after all, it is in my head. Though I’m not sure it’s in the way he intended it to be.  I guess I just have to keep working harder at that positive thinking… not sure there’s anything else I can do for now.