Monday, January 21, 2013
Friday, January 18, 2013
Real Talk About Microscopic Polyangiitis (MPA)
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| Me in the Hospital |
So, in interest of being real, I feel like some people might think I am attention seeking or feeling sorry for myself. While yes, I am feeling a bit angry and disturbed at having this damn illness that robbed me of so much, I know I can beat it to an extent…it is accepting the limitations I have. I compare myself to before I was sick, a beautiful, active, vibrant young woman who could walk for miles on end, hours, across two towns in one night. I compare myself to the girl who would wake up refreshed and be able to conquer the world if I had to. The girl who was a 4.0 special honors student at college. The girl who went out with friends all the time. The girl who had a job I loved, and was great at. Then it all started to slip away…a little here, a little there. Eventually I couldn't even walk across the house a few feet to go from my bedroom to my bathroom, let alone across campus to go to school, so I stayed home. I failed 4 semesters of college because of being too sick to even sit up for long at a computer. I started to isolate.
Eventually I got so ill, I could never breathe…coughing until I coughed up blood…nosebleeds, skin sores, pain. My father was in the hospital and I couldn’t visit him because I thought I had an infection in my lungs…he died and I never could tell him I loved him or say goodbye because they wouldn't let me in the ICU sick and coughing up blood. Eventually just to walk I needed a cane, and at stores, a cart to ride on. I gained weight. Lots of it. I was giving up and wishing I would die. Something told me I was dying and I did not care any more,in fact I wished for it, and often thought about taking my own life. Then came a switch to a hospital, Sanford in Fargo. I got an internal medicine doctor, doctor Aruna Aravapalli. She listened to me from start to finish and suspected a few things, so she took some tests. When they came back messed up she sent me promptly to Rheumatology After seeing all of this they said I was sick. If they did not find out what was wrong with me, I'd need to go to Mayo clinic. The problem, they said, was that I did not fit into one disease symptomatically. I fit many.
So, 63 tests, CT scans and other testing later, a diagnosis of Microscopic Polyangiitis was made. Positive P-ANCA level with positive MPO’s…high inflammation levels, kidney issues, chronic sinus changes, lung problems, skin, everything…though they are still trying to see if I have an overlap in autoimmune diseases, they started immediate treatment. I was told I did not have long left to live if I did not start treatment ASAP, and the only reason I did not die yet was due to the high doses of prednisone that I had been on off and on for years on end for my lungs…it kept me alive, but did not put this disease into remission so I can have quality of life. I laughed and smiled when they told me. This is kind of odd I know, being told you have a life threatening rare disease, but I had been accused of being a drug seeker, hypochondriac, attention seeker, and mentally unstable. I had been told everything was in my head, and that they could not find anything wrong with me…I was dismissed by everyone I dealt with. I was even told by a doctor that I obviously did not need his services and he refused to see me any more because I missed an appointment because I was bleeding out of my lungs coughing up blood a lot, and was too sick to go to the appointment.
I was treated callously, only to find out that my feelings were right, and that I had been targeted because THEY couldn't figure it out, so it must have been me being a liar, druggie, crazy etc. Now I knew I was not wrong, that they were.
Anyway, I compare myself to my old self, not seeing that I can now drive (although I need a handicapped permit), and I can walk without a cane. I can use a regular cart in a store, and not a riding cart although I have to rest a lot. I am also alive when I should be dead. I was near it when I was diagnosed. I need to accept my new reality, my limitations. I need to adjust my goals and my life in order to fit this new reality, and still have a quality life. I am thankful for being alive…but yes, I feel angry. I grieve myself. I sit afraid sometimes when I am sick again that I could die. I grieve the life I had before…and sometimes I get so angry I can hardly breathe.
Why me? Not hardly. I ask why ANYONE should suffer these diseases. I hate this disease…and I think it is unfair that life can be changed so much in a heartbeat…for me, for anyone with a multitude of diseases. So bear with me as I adjust to my new reality. Don't ignore me. Think of me when you make plans. I am isolated enough because of this illness. Even if I can’t make it because I am sick at the time, being asked means the world to me. Don't be afraid of me. I am not contagious. You don't need to treat me different. I am still Tamara. I am still me, and I can still love, laugh, and play.
I had a dream once where I was invisible. I was reaching out to all these people and no one could see or hear me. I woke up sobbing. It is happening now. Please do not shut me out…out of sight out of mind. I am here. I am alive, and I am still Tamara. Even if I am a slightly different version of Tamara, I am still inside here somewhere, and I WILL beat this disease.
Eventually I got so ill, I could never breathe…coughing until I coughed up blood…nosebleeds, skin sores, pain. My father was in the hospital and I couldn’t visit him because I thought I had an infection in my lungs…he died and I never could tell him I loved him or say goodbye because they wouldn't let me in the ICU sick and coughing up blood. Eventually just to walk I needed a cane, and at stores, a cart to ride on. I gained weight. Lots of it. I was giving up and wishing I would die. Something told me I was dying and I did not care any more,in fact I wished for it, and often thought about taking my own life. Then came a switch to a hospital, Sanford in Fargo. I got an internal medicine doctor, doctor Aruna Aravapalli. She listened to me from start to finish and suspected a few things, so she took some tests. When they came back messed up she sent me promptly to Rheumatology After seeing all of this they said I was sick. If they did not find out what was wrong with me, I'd need to go to Mayo clinic. The problem, they said, was that I did not fit into one disease symptomatically. I fit many.
So, 63 tests, CT scans and other testing later, a diagnosis of Microscopic Polyangiitis was made. Positive P-ANCA level with positive MPO’s…high inflammation levels, kidney issues, chronic sinus changes, lung problems, skin, everything…though they are still trying to see if I have an overlap in autoimmune diseases, they started immediate treatment. I was told I did not have long left to live if I did not start treatment ASAP, and the only reason I did not die yet was due to the high doses of prednisone that I had been on off and on for years on end for my lungs…it kept me alive, but did not put this disease into remission so I can have quality of life. I laughed and smiled when they told me. This is kind of odd I know, being told you have a life threatening rare disease, but I had been accused of being a drug seeker, hypochondriac, attention seeker, and mentally unstable. I had been told everything was in my head, and that they could not find anything wrong with me…I was dismissed by everyone I dealt with. I was even told by a doctor that I obviously did not need his services and he refused to see me any more because I missed an appointment because I was bleeding out of my lungs coughing up blood a lot, and was too sick to go to the appointment.
I was treated callously, only to find out that my feelings were right, and that I had been targeted because THEY couldn't figure it out, so it must have been me being a liar, druggie, crazy etc. Now I knew I was not wrong, that they were.
Anyway, I compare myself to my old self, not seeing that I can now drive (although I need a handicapped permit), and I can walk without a cane. I can use a regular cart in a store, and not a riding cart although I have to rest a lot. I am also alive when I should be dead. I was near it when I was diagnosed. I need to accept my new reality, my limitations. I need to adjust my goals and my life in order to fit this new reality, and still have a quality life. I am thankful for being alive…but yes, I feel angry. I grieve myself. I sit afraid sometimes when I am sick again that I could die. I grieve the life I had before…and sometimes I get so angry I can hardly breathe.
Why me? Not hardly. I ask why ANYONE should suffer these diseases. I hate this disease…and I think it is unfair that life can be changed so much in a heartbeat…for me, for anyone with a multitude of diseases. So bear with me as I adjust to my new reality. Don't ignore me. Think of me when you make plans. I am isolated enough because of this illness. Even if I can’t make it because I am sick at the time, being asked means the world to me. Don't be afraid of me. I am not contagious. You don't need to treat me different. I am still Tamara. I am still me, and I can still love, laugh, and play.
I had a dream once where I was invisible. I was reaching out to all these people and no one could see or hear me. I woke up sobbing. It is happening now. Please do not shut me out…out of sight out of mind. I am here. I am alive, and I am still Tamara. Even if I am a slightly different version of Tamara, I am still inside here somewhere, and I WILL beat this disease.
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