My illness started in late 2004. I suddenly got sick with symptoms of: heart palpitations, pericarditis, extreme headaches, muscle pain and weakness, joint pain, stiffness and swelling and severe fatigue. It was found that I had Grave's Disease and because of my allergy to iodine, I had to have surgery to remove my thyroid. The day after my surgery was when I had my first seizure (April 16, 2005) No one could explain what caused it, but my surgeon said the surgery could have "exposed" an unknown autoimmune disease. But that I would likely not have any more seizures. WRONG! A few weeks later I had to give up my job as a Bank Teller, and quit going to school for medical assisting. I was devastated! seizures were up to 20+ a day. Neurologists tried every type of anti-convulsants on me there was, none of them helped and some made it worse.
In 2007, after I had my first daughter, I decided this was not a life for me to live. I didn't want to be a Mom who was always sick. So, I went back to the Rheumatologist that I was sent to right before I got the Grave's Disesase diagnosis. The Grave's Disease was such a severe case that my Primary care dr and myself believed all my symptoms were from the Grave's Disease. In late 2007 that diagnosis just wasn't working for me any more. So, I went back to my Rheumatologist where he said he wished I came back a few years earlier, as my labs show an indicator of Lupus. He also did a tender points exam and diagnosed me with Fibromyalgia. We were planning to move to Arizona within the month, so I knew I would have to follow up with a new Dr with all these issues. Well, not too long after moving to Az, I got very sick and was taken my ambulance to the ER. I was admitted and in the hospital for 9 days. My seizures were uncontrollable, I had acidosis so they had a Nephrologist testing my kidney's a lot. I also had stomach issues where anything I ate cause severe burning like pain. They did an upper and lower colonoscopy and diagnosed my with Barrett's esophogus. Basically changes in the cells in the lining of my esophogus that has been known to cause cancer, I don't have cancer, but it is very possible one day it could turn into cancer, we are trusting in God and remaining hopeful that, that will never happen.The Neurologist in the Hospital told me to find a Rheumatologist to get me on a medicine that helps prevent flares from happening, That never happened and the three Rheumatologists I seen all just gave me a couple medrol dose packs to start when I was starting to flare. I learned to recognize my symptoms and signs early on in a flare and knew when to start the medrol dose pack. This intermentintly take steroids, on and off prednisone began to get old, quickly! I was great while I was on them, but what about when I wasn't on them? My flares slowly started coming more and more frequently to the point that I was ALWAYS sick and miserable.
In early March of this year, I had some really bead kidney pain, I thought maybe it was an infrction, so I went to Urgent care. My U/A there was normal so she sent me to have a ct scan. It was found that my kidneys were large due to inflammation and they are calcified. Now, the Urgent care Dr made it seem like a a much more scary ordeal than what it was but, she mentioned this could be early signs of kidbey failure from the Lupus she mentioned dialysis. So, I was terrified until I could see a Nephrologist the following week. The nephrologist was amazing, he of course ordered a BUNCH of tests and I go back to him in June. His main concern, was that I wasn't on anything on a daily basis for the Lupus. So, he sent me to a Rheumatologist he knows and has sent patients to before, so this Rheumatologist came highly recommended. I saw my PCP before I saw the rheumatologist and told him that the Nephrologist's main concern seemed to be that I wasn't really on anything for the Lupus om a daily basis. So, my pcp prescribed me plaquenil. I started to see minimal but noticable changes after being on it for almost a month,
Finally the big day came to see this new Rheumatologist, whose office was 21 miles away in downtown Phoenix At St Joseph's Hospital and Medical Center. My nerves were relieved as soon as he walk in. He listened to me, wasn't super nice and informative. He upped my plaquenil and added 10mg prednisone every day. He also said a kidney biopsy may be something that will be done as well as a brain biopsy. But, for now he is working on a prior auth from my Insurance to get me to one of St Joseph's medical Center Neurologists at barrow, which is known for having the BEST Neurologists in Arizona, When my insurance approves it, I will be admitted to the Hospital (they have a seperate wing designated for seizure monitoring) for at least 5 days in hopes to find where my seizures are coming from, and this is when they may have to do a brain biopsy as well (eeekkk!) Apparently Fibromyalgia can cause pseudo seizures, so the Rheumatologist wants them diagnosed properly to work on a treatment plan best for me.
So, that's where I am with this disease. I was diagnosed in 2008 qnd then again in 2010 and am just now starting on the path to REAL treatment! Lupus has me down sometimes, but I always pull myself back up. I have my children, husband and friends and family depending on me. So I will always stand up to Lupus and fight like a girl! :) Join us in spreading awareness through our day to day journeys with Lupus!
~~Sarah
My spelling & grammar errors are embarrassing! Lol My only excuse is I have 3 kid s running around & don't always spell check because I'm in such a hurry to get things done lol. I will be better, I promise! ;) ~~Sarah
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