Hello everyone! This forum has gotten me through the last few years, but until now, I have never been able to come out of my shell. I put off writing this, because there are a lot of bits and pieces to my story, and I do not want to make your heads spin!
My mom called me an Enigma from the time I was born, which was with a congenital birth defect of my right ear-just one tiny earlobe. I had 7 plastic surgeries, beginning at age 5. I went into a coma for 3 days during the first one, with a bout of encephalitis. My golden locks were shaved and emergency surgery drilled 6 burr holes to release the fluid in my brain. I got sick a lot as a kid, but was determined to be a clarinet player, despite being deaf in one ear. Got my degree in music performance, auditioned, and joined the Army, as a soldier first and a musician second! I just loved it, but five years later my career came to a halt, with the arrival of Lupus. My husband and I were blessed with a healthy baby girl, but 3 days later I had a pulmonary embolism. Next, Lyme Disease, followed by terrible headaches caused by an arachanoid cyst the size of a raquetball in my right temporal lobe. That was remedied by putting a VP shunt into my head, (twice), that runs down into my abdomen. That abdominal incision caused the first hernia. Lots of flares, hospitalizations, etc, and medicines due to the ever changing mixed connective tissue disease, plus 2 mini strokes. And then my faithful stomach of steel turned on me...
Spring of 2010 I had a sudden stomachache, and went to the ER 22 hours later. Out of everything, that was by far the worst pain in my entire life! The cat scan showed bad diverticulitis, along with fever and high WBC. I spent a week in the hospital with my team of many specialists, but they felt that it was not safe to operate until I was stabilized, so they tried IV antibiotics and the icky tube in the nose. Things got worse and on day 8, my colon perforated. I had emergency surgery resection. (They say that the perforation was caused by the long term prednisone I had been on for the lupus, bronchitis and pleurisy that Winter and Spring. I was blessed to have a reversal 4 months later. I followed doctor orders to the tee but ended up having incisional hernia repair 2 months after the reversal. (He meshed my entire abdomen, so I could hopefully go back to clarinet!) I tried to just move on and into new things. Last summer I was put back on high steroids and oxygen 24/7, due to bad scary low oxygen saturation and breathing difficulty caused either by methotrexate toxicity or small vessel vasculitis. The doctors NEVER know WHAT TO DO WITH ME. Was flown to Mayo Clinic in a private jet!
The interesting thing is that when put on the prednisone, my tummy woes went away...there was suddenly room for food, and it was a pleasure to eat! I had to change Lupus meds and very slowly taper off of the prednisone. Now I am having lots of bowel issues, and have had a few strictures and balloon dilations. At the present, although my last colonoscopy and endoscopy looked ok, my new GI and colon surgeon are thinking Crohns, because I responded so well to prednisone. I had the small bowel series xrays on Monday. He wanted to do the pill cam but has changed his mind, (hysterectomy in Dec is probably the icing on the adhesions and scar tissue, and that pill could get stuck.) There is also the possibility of another small hernia. He now wants me to go to a university that has more advanced equipment. I have lost almost 15 lbs in a few months since ending prednisone. The food just gets painfully stuck for a day or two right in the area where the surgeries were, My upper abdomen gets trapped with air and distended until the food passes, and then I have terrible diarrheah for a few days, and am wiped out. So, I end up doing liquids about 2 or 3 days. It is like being on a merry go round, and I can't get off!
I feel so alone, but that goes away when I read this forum! Even just making limericks has made me smile the last few days! I just did not want to run everyone off with my story though...it is embarrassing. I want to help people, not complain to them!
I am not expecting a clear cut diagnosis to be made, but after 51 years, I am just praying that I can get into a comfortable groove for a bit. I would much rather have a little quality over quantity! Even though my doctors don't often find the exact answers to my problems, I feel blessed to have a team of so many specialists that respect and care about me, and they all work together. One more to mention... my hematologist/oncologist, who keeps a close eye on these funky proteins I have for multiple myeloma.
Thank you, if you read this far! My heart goes out to so many of you that I read about, especially the little ones!
My mom called me an Enigma from the time I was born, which was with a congenital birth defect of my right ear-just one tiny earlobe. I had 7 plastic surgeries, beginning at age 5. I went into a coma for 3 days during the first one, with a bout of encephalitis. My golden locks were shaved and emergency surgery drilled 6 burr holes to release the fluid in my brain. I got sick a lot as a kid, but was determined to be a clarinet player, despite being deaf in one ear. Got my degree in music performance, auditioned, and joined the Army, as a soldier first and a musician second! I just loved it, but five years later my career came to a halt, with the arrival of Lupus. My husband and I were blessed with a healthy baby girl, but 3 days later I had a pulmonary embolism. Next, Lyme Disease, followed by terrible headaches caused by an arachanoid cyst the size of a raquetball in my right temporal lobe. That was remedied by putting a VP shunt into my head, (twice), that runs down into my abdomen. That abdominal incision caused the first hernia. Lots of flares, hospitalizations, etc, and medicines due to the ever changing mixed connective tissue disease, plus 2 mini strokes. And then my faithful stomach of steel turned on me...
Spring of 2010 I had a sudden stomachache, and went to the ER 22 hours later. Out of everything, that was by far the worst pain in my entire life! The cat scan showed bad diverticulitis, along with fever and high WBC. I spent a week in the hospital with my team of many specialists, but they felt that it was not safe to operate until I was stabilized, so they tried IV antibiotics and the icky tube in the nose. Things got worse and on day 8, my colon perforated. I had emergency surgery resection. (They say that the perforation was caused by the long term prednisone I had been on for the lupus, bronchitis and pleurisy that Winter and Spring. I was blessed to have a reversal 4 months later. I followed doctor orders to the tee but ended up having incisional hernia repair 2 months after the reversal. (He meshed my entire abdomen, so I could hopefully go back to clarinet!) I tried to just move on and into new things. Last summer I was put back on high steroids and oxygen 24/7, due to bad scary low oxygen saturation and breathing difficulty caused either by methotrexate toxicity or small vessel vasculitis. The doctors NEVER know WHAT TO DO WITH ME. Was flown to Mayo Clinic in a private jet!
The interesting thing is that when put on the prednisone, my tummy woes went away...there was suddenly room for food, and it was a pleasure to eat! I had to change Lupus meds and very slowly taper off of the prednisone. Now I am having lots of bowel issues, and have had a few strictures and balloon dilations. At the present, although my last colonoscopy and endoscopy looked ok, my new GI and colon surgeon are thinking Crohns, because I responded so well to prednisone. I had the small bowel series xrays on Monday. He wanted to do the pill cam but has changed his mind, (hysterectomy in Dec is probably the icing on the adhesions and scar tissue, and that pill could get stuck.) There is also the possibility of another small hernia. He now wants me to go to a university that has more advanced equipment. I have lost almost 15 lbs in a few months since ending prednisone. The food just gets painfully stuck for a day or two right in the area where the surgeries were, My upper abdomen gets trapped with air and distended until the food passes, and then I have terrible diarrheah for a few days, and am wiped out. So, I end up doing liquids about 2 or 3 days. It is like being on a merry go round, and I can't get off!I feel so alone, but that goes away when I read this forum!
Even just making limericks has made me smile the last few days! I just did not want to run everyone off with my story though...it is embarrassing. I want to help people, not complain to them! I am not expecting a clear cut diagnosis to be made, but after 51 years, I am just praying that I can get into a comfortable groove for a bit. I would much rather have a little quality over quantity! Even though my doctors don't often find the exact answers to my problems, I feel blessed to have a team of so many specialists that respect and care about me, and they all work together. One more to mention... my hematologist/oncologist, who keeps a close eye on these funky proteins I have for multiple myeloma.
Thank you, if you read this far! My heart goes out to so many of you that I read about, especially the little ones!
