The cost of persisting in this world of consumerism tied to medical need. Also, the giving of things that don't matter to help support the thigns that do.
(ALL THE THINGS)
I'm now 28. I was originally diagnosed in 2006 at the age of 20, by my primary care doctor in Virginia. I was then told by the rheumatologist I was referred to that I was too young to have Lupus and was diagnosed with fibromyalgia. In 2009, after moving back to my home state of NJ, a pain crisis and extremely inflamed joints led to an emergency referral to a rheumatologist associated with Columbia Presbyterian. She reviewed my history, did a lot of bloodwork, assessed me and my symptoms and diagnosed me with Systemic Lupus Erythematosus, and said that it began in or before 2006 when my PCP made the original diagnosis. I immediately began treatment with Plaquenil. I was also diagnosed with autoimmune hepatitis, meaning my immune system began attacking my liver. Plaquenil is also the first line treatment for this disease. After several years of some pain and impaired health but generally having the lupus under control, I thought that was more or less how the rest of my life with lupus would be.
In October of 2013, my brother committed suicide, and the stress of the horrible loss and issues surrounding it led to a dramatic increase in symptoms. My rheumatologist made the additional diagnosis of new onset Rheumatoid Arthritis, and increased my dosage of Imuran and began Prednisone. I was having a lot of pain and issues with mobility and working; my finger joints were constantly stiff and painful, and my knees and hips were also having a lot of pain. A few weeks later, I was brought to the ER with sudden, excruciating pain in my right leg. Though there was no inciting accident or injury, but after an MRI was diagnosed with a large bulge (6mm) at the L5/S1 level. I began seeing a spine and pain management doctor who works with my rheumatologist, and I began the process of trying epidural injections to reduce pain and increase mobility. I was unable to get around without a cane or a walker, and I began short term disability while I was trying to resolve that issue, as well as find some relief from the pain, constant fatigue and repeated illness due to the autoimmune issues. I began using Imuran, a biologic modifier, at home as a weekly subcutaneous injection. The prednisone, combined with my lack of mobility, led to an 80lb weight gain and Cushing's syndrome. In June of 2014, I finally had a microdiskectomy, but the disabling symptoms of the RA/Lupus were still causing me to be unable to work, or really function on any level other than basic survival. After 6 full months of Orencia treatment, I had a sudden relief of my symptoms. I began physical therapy to regain the lost muscle and allow my body to support itself. I went back to work in August of that year. I thought that I had finally had of the autoimmune diseases and would be able to pursue finding a job as a nurse, since I had been unable to since getting my RN license in September of 2013. Sadly, it was not to be. In October of 2014 while driving to work, an elderly gentleman ran a stop sign and hit my car. I was diagnosed with 2 herniated cervical disks, and then the autoimmune diseases came back in full force. I was switched from at home injections of Orencia to IV infusion, and began the epidural injections on my neck for those disks.
During the last snowstorm of this year in the beginning of February, I fell in the snow and re herniated my lower back disk another 6mm, which led to having spinal fusion surgery on April 13th. So far, the surgery has not provided any relief from the debilitating shooting pain in my legs, and has caused further aggravation of my autoimmune disease. My autoimmune symptoms are still out of control; if I take a shower, I need a two hour nap after. The most mundane activities cause me such extreme fatigue that I will fall asleep wherever I happen to sit down. My joints and muscles hurt constantly, supplemented by the pain from my multiple disk herniations and surgery. I am living with the hope that the IV infusions and potentially a round of chemotherapy can get both the Lupus and RA back under control, that the surgery will eventually help with my leg pain, that a series of epidural steroid injections in my neck will help reduce the pain in my arms and the numbness and tingling in my fingers from the herniations in my neck, and that I can have a productive life again.
I am back on temporary disability, and the state of NJ only pays 60% of the part time salary I was making prior to surgery, meaning I have less than $600 a month to pay my bills, rent and extensive medical expenses. The state also does not pay regularly as they are supposed to, so I am often left for weeks without receiving a payment, which makes scheduling bill payments impossible. It is an extremely frustrating and terrifying situation to be in. Prior to my health emergencies, I have always worked and paid my own way through life, insisting on relying on myself as much as possible, though I was generously gifted my Associates degree expenses from my parents. I struggle to pay bills and pay for doctors visits and the medications I need to stay alive.
If I were healthy, I would be working as an RN, utilizing the degree I put my heart and soul into getting. I would be finishing my BSN, which I have put on hold because I am too ill to take classes. I would be volunteering at health clinics and town elder health events. I would be spending more time with my aging grandparents, and my family. I would go to concerts, hike at the Ramapo Reservation, visit museums and friends. As of now, I can’t drive, and my immunosuppressive medications make it dangerous for me to be in large groups. I truly hope that one day I will be able to do at least some of these things, and so I keep fighting every day for health, and wellness.
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