This Lupus Life

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

When everything is happening all at once

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When I saw the Neurology-Immunology team at RPH it took me a few days to mentally prepare before I was ready to begin the high dose of Prednisone (corticosteroids) prescribed for initial treatment. The dosage was 50mg and generally I abhor the side-effects this medication has on me.

To transcend into a healthy frame of mind for a 6+ month stint on Prednisone I reflected on my knowledge of the reason corticosteroids are used. They reduce types of swelling, regulate immune function and assist in body healing. They are effective in their use and yet some people do not respond well to them, so I am fortunate that I do not feel nausea or severe mood alterations. The weight gain is something I can manage with will power, as is the irrational appetite and strong anxiety, occasional depressions and unrestive mental focus. I planned a food regime, a soft exercise program, found a good journal to note daily occurrences and had an open conversation with my family and close friends on what would be going on with me and what to expect. After a few days I was ready and so began my journey with a completely positive opinion of the treatment and outcome.

Basically, I knew I had to do this and that was the big light at the end of the tunnel for me.

One week in to Prednisone and my appetite was manageable, my vegetable consumption had joyfully increased which made my overall health feel great and my weight was stable. I felt good.

I am a stickler for good health. This shouldn’t be a surprise. I like to see a dentist annually and have my eyes tested bi-annually. The optometrist visits for my eyes isn’t much of a surprise. As I am on Plaquenil, have astigmatisms on both eyes, and have Bells Palsy which has resulted in potential bad eye health as my right eye does not close. My vision hasn’t been great since I was a child but the right deteriorates a little more each year as the muscles weaken from lack of moisture.

The Optometrist

So it is about this time that was due for my optometrists visit, and I was also in need of prescription sunglasses as my eyes are becoming increasingly unable to accept the harsh Australian sunlight. I went ‘all out’ and had the full scan options, as always. I still am taking good care of my eye, but it was clear they were still continuing to decline slowly on the surface due to exposure to the elements.

“Would I like to trial a new product which may help my outer eye health?”

“Oh, boy yes please!”

-Enter Bandage Contact Lens

They must be used with a special eye drop and the Lens is a disposable. One use only, they last for up to 5 hours. One Lens on the right eye on days when the irritation is heightened. Frequent lubrication is needed. The Lens works by keeping moisture in and creating a barrier from the elements so the eye may heal. This may seem obvious and simple but normal contacts need natural lubrication, they tend to dry the eye and my eye hasn’t has a complete barrier between it and the elements since 2007.

Winning Lotto wouldn’t be as rewarding.

I had to walk around the shopping centre for 30 minutes with a Lens on my right eye and my glasses on (it isn’t strong enough to affect my vision alone). I was given a sample pack of more to trial over the next few months and a bottle of the special drops, which are far better than any prescription ones I have used previously and they are free of preservatives. I was feeling pretty great about now.

The complete scan.

When I had eye trouble with the masses last year the optometrist scanned my retina and macular. Everything had looked fine. This scan showed I had developed Drusens on my Macular. The Retina is at the back of the eye and capture images (by some amazing trick). The Macular is a layer of flesh below the Retina that draws out waste and sends it out by vessels (or something like that). A Drusen is a growth that has developed on the Macular when the waste isn’t cleared away. It can happen for various reasons and start to appear sometimes in people after the age of 50. It is one of the first signs of Macular Degeneration.

I have not been to the Neurology Immunology team yet to be able to understand anything more. I have not made assumptions about the meaning of a presence of Drusens. I have not tried to guess why they are there or what might happen next. I simply had the optometrist document what he could, create a file of the old and new scans for me to take to my next appointment and then I ordered my sunglasses.

I don’t know how to feel about this. I love my life. The thing that holds my spirits so high is the beauty of the world. Perth is so incredible. The country area I grew up still takes my breath away for it’s harsh Australian vistas. Our beaches are some of the best in the world. I paint, photograph and sew. I read and write and watch TV and film. I LOVE MY REFLECTION!!!!!

Lupus can take my limbs, my organs, my hair. It can scar my skin, make my weight blow out, destroy my speech, mobility and concentration. It can keep my alone and unable to have children and unable to work full time. It can kill me at 30.

But don’t take me eyesight. Please not that.

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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.

5 thoughts on “When everything is happening all at once

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