This Lupus Life

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

Clarity

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I hate to think back on just how overwhelming this semester has been. In the space of such a few brief weeks my world has shifted from a full five-day semester study load at university, such as my Semester One of 2015 at Murdoch University was, to a life in which every event of note for each week occurs only on the Wednesdays.

Through the turmoil, stresses, constant treatments and recoveries, unbelievable amounts of appointments and visitations assigned to my ‘free time’ it is clear that I have been delivering only drabs of information in confused segments to you.

In short I have missed or mis-informed you in parts.

Allow me now to clarify the current predicament so you are on the same page as me.


From the last week of July, every university lecture and tutorial I have attended has been registered for Wednesdays.

Wednesday 5th August I had a minor stroke. Yes, I can confirm now that these sporadic episodes that I have been having for the last two-three years were in fact closer to strokes than seizures of any sort. Previously they had been presumed as partial focal seizures, mimicking strokes effects. It had been guessed even at Transient Ischemic Attacks as well. But they are most similar to minor strokes, and the ongoing occurrence of these episodes certainly does not indicate I have Epilepsy.

On that day I was admitted to Fiona Stanley Hospital where I was found to have another brain lesion, the biggest to date. I was then infused with three 100 ml doses of methylprednisolone and released for follow up by my regular NeuroImmunology Team at Royal Perth Hospital.

Wednesday 12th August was my birthday. That in itself was cause for note.

Wednesday 19th August I was contacted by the NeuroImmunology Team at Royal Perth Hospital requesting I be in attendance by 2pm that day for admittance for an indeterminate amount of time. That day I was admitted to RPH and informed of the tests they would undergo while I was there.

Friday 21st August I had a lumbar puncture in and a few MRI’s. I was also informed that I should expect to have a cranial biopsy on the lesion in my brain. But I did not have Epilepsy.

Sunday 23rd August it was confirmed that I had a Kidney Infection.

Tuesday 25th August I was released from RPH. My biopsy was booked for Friday 28th August.

Wednesday 26th August I had my pre-operation meetings. Half a day of moving ever so slowly around Sir Charles Gairdner Hospital meeting all the medical professionals who would be engaging in my operation on the Friday.

Friday 28th August I was operated on at 11am. I awoke at 2:30pm and was admitted to the Advanced Care Ward at 4pm.

Saturday 29th August I was discharged in the middle of the day.

Wednesday 2nd September I returned to university.

Friday 4th September the staples from my surgery were removed.

Friday 11th September I was informed of the results of the biopsy and the treatment confirmed to be used.


The facts of this whole six-week-saga can be now clarified below:

  • The lesion is caused by Vasculitis. This is the direct inflammation of the vessels of a specific part of the vascular system. This form of Vasculitis is referred to as Cerebral Vasculitis, or Cerebritis. It is different to Neural Vasculitis which affects the entire neurological system.
  • The lesion has lymphocytes (cells from the lymphatic system) in it. This is not rare, nor an indication of cancer, nor even really a large cause for concern. In fact lymphocytes can be known to frequent sites of inflammation in patients suffering from Rheumatoid Arthritis and other rheumatic or inflammatory diseases.
  • My Vasculitis is not caused by my Systemic Lupus Erythematosus. But I do have both diseases. One is not the direct cause of the other, both occur in isolation as often as they occur in collaboration. My Systemic Lupus Erythematosus has actually been in remission for the last four years remarkably. It’s just a fluke. People such as me who have active autoimmune diseases from a young age do seem to acquire numerous autoimmune or inflammatory diseases. One does not cause others, they are not related.
  • When I earlier made the statement that my lesion was Vasculitis but this Vasculitis was not caused by my Lupus, I was not saying I do not have Lupus. I do have Systemic Lupus Erythematosus. I do have Rheumatoid Arthritis. I do have Cerebritis
  • My Vasculitis Lesion is a large area of excess cells in my brain. if they do not go they will continue to accumulate. I will undergo chemotherapy as the next and most likely treatment. It will be intravenous. It will not be as many doses, or over as long a period as those that have cancer. Chemotherapy is a chemical poison that is delivered into the body for the direct purpose of killing cells. Chemotherapy is commonly used for a variety of illnesses such as my autoimmune illnesses for the exact purpose of eradicating the large number of severe inflammation of excess cells. I am not the first, or even a rare case for this situation. I do not have cancer, but a common cancer treatment is the best chance for me.

Please dear friends, understand. I cannot keep having brain lesions. I cannot keep having strokes. I just want to have a normal life. I want it to be over. This is my best chance to break through the Lupus, Vasculitis, Rheumatoid Arthritis and Costochondritis.

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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 “Clarity

  1. You sure have been through a lot! I wish you the very best of luck and the strength to keep on writing.
    best,
    jack

    Like

  2. I am so sorry to hear about the chemotherapy. I know you are tired of suffering and this is adding one more thing onto your already too-difficult life.

    My thoughts are with you.

    Annie

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  3. Pingback: [My] Chemotherapy for Vasculitis – Rituximab | This Lupus Life

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