This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Something more serious

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I have been feeling lethargic of late. My movements have been slower, my muscles have been resisting the thoughts my sluggish mind has been sending. When I must do something, I need to stop all other thoughts, focus myself and force energy into the effort of following through. The process, which seems to take half an hour to me, might only be at most 3 seconds to a viewer. Unless I’m in a conversation or going on stairs. Don’t push me too hard when I’m on stairs and don’t disrupt my flow.

When I’m moving or doing an action I tend to go okay, unless I’m weary or starting to feel the pain. Pain is not a frequent guest in my life these day. It is a surprise, I know, and very rare for someone as troubled as much as I have been with SLE, particularly the multiple chronic pain ailments afflicting me. Generally these days I am more numb than anything else. It is all the heaviness in me, weighing me down, holding me from feeling too engaged, energetic, motivated.

Thank Gorge I still have my mind.

Over my holiday I had some wonderful time to myself to reflect and relax. I had no one to meet with regularly, no busy schedule and very little plans. My days consisted of mostly hand needlework on the sofa with Polly, walks to the store for the nights dinner and maybe a ride to the pharmacy or a local craft or book store for a browse. Nothing taxing or stressful.

On the first day of my new semester at university (Semester 1, Year 2!!) I had a lecture first thing, followed by another one directly, followed closely by a class workshop for Teaching the Arts. When this 5 hour stint was over I met my folks at the train station where we went directly to the Neurology Clinic.

Connor and She Leo saw me and this is what they said:

They asked for a full account of everything that has happened. At times I cried simply because it was just so hard for me to remember and then speak the words out loud. Connor and She Leo were kinder to me this time.

They hadn’t received the EEG results. They had received the MRI results. They wanted more blood tests. My body is significantly weaker on the left side. They’ve noticed my slurred and stuttered speech. The hair will continue to fall out since I’m in a flare.

The episode I had in June was a partial focal seizure, which means it was sort of like an absent epileptic seizure but focuses on specific visual and motor functions. They cannot confirm more without EEG results. I do not have scarring on my brain from what they can see, but I do have more masses in the left hemisphere of my brain. They are quite large. I have Cerebral Vasculitis due to the SLE. I will need to be treated for it long term as this is what causes all the issues.

The short term treatment for the Vasculitis is steroidal so Prednisolone, Prednisone or Solone. Long term there will be another immunosuppressant, but they take much longer to have an effect and I cannot afford to wait untreated for that to happen. I will be on steroids for 6 months, the length of time needed for the other medication to work, and then will wean off.

The heaviness and weighted-down feeling my body is experiencing, as well as the numb disinterest in my mind is all due to the Vasculitis. The stuttering, slurring, cognitive difficulties are because of the Vasculitis.

So. This is me. This is how my week started.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

3 thoughts on “Something more serious

  1. Pingback: When everything is happening all at once | Nitya Nata

  2. Pingback: Anaphylaxis ?? | Nitya Nata

  3. Pingback: Distance | This Lupus Life

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