It's been a while...
August 7, 2008 9:47pm
I forgot that I had joined this site, which is quite unfortunate because I really could have used the support this past year. My pancreatitis is …
HeidiZoo
2:13pm, August 15, 2008
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About Me
HeidiZoo
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About Me
I started having chronic knee pain early summer of 2004. My health has gone down hill ever since. I've had five major surgies, a couple of near death experiences, several tests and procedures, including bone barrow biopsies. I have an autoimmune disorder, but my doctors are having a difficult time pin-pointing which one. They are leaning towards Lupus. My most major surgery was a complete Whipple. I had to have a tumor removed from the head of my pancreas. I am now missing a third of my pancreas, my gallbladder, and had the rest of my digestive tract completely rearranged. Since 1/07 I have been hospitalized almost non-stop for pancreatitis. I also have a bad heart. I've had surgery for Supraventricular Tachycardia, which was successful, but I then became diagnosed with Neurocardiogenetic Sycope. Which is a form of Heart Disease that knocks me out in so many ways! It weakens me dramatically and I could pass-out at any time. I lost my dream job working in veterinay medicine (I've been working with animals since I was 15... I used to be a zookeeper) due to my health issues and I am now unable to work ever again. My body causes me so much pain! My knees barely support me, I always feel as though I have a knife in my stomach due the pancreatitis and scar tissue, and my muscles everywhere cramp up frequently. I've been trying to find my purpose in life... but aren't we all?! It's hard not being able to work. I always felt my work defined me, but I still have animals in my home that need my care ;) Please check out my MySpace page. I have many blogs on there about what I've been going through. It's www.myspace.com/vexation4me
I started having chronic knee pain early summer of 2004. My health has gone down hill ever since. I've had five major surgies, a couple of near death experiences, several tests and procedures, including bone barrow biopsies. I have an autoimmune disorder, but my doctors are having a difficult time pin-pointing which one. They are leaning towards Lupus. My most major surgery was a complete Whipple. I had to have a tumor removed from the head of my pancreas. I am now missing a third of my pancreas,
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Interests
Reading, reading, and reading, wildlife, animal behavior, spending time with my two cats, my dog and my snake, tattoos, movies, music...
Reading, reading, and reading, wildlife, animal behavior, spending time with my two cats, my dog and
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Journal
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Journal Entry for June 17, 2007
June 17, 2007 9:28am
I've never been very good about writing in a journal. There was always something awkward about it to me. At some point I'll get …
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Hugbook
Good Luck
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I’m With You
Dear Heidi, I am so sorry you are in the hospital again today. I love you and will be praying for you...Mom
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Photos
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Support Groups
Close Lupus
I definitely have an autoimmune disorder and my rheumatologist has been leaning towards Lupus... so have all my oher doctors. I have chronic pain every day, and haven't had any white blood cells in three years. My full story is much too long to tell.
Treatments
- Celebrex Not Working
- Did absolutely nothing for pain.
- Plaquenil Not Working
- Made me extremely nauseous and I lost my appetite.
- Prednisone Somewhat Helpful
- Helped with my joint pain a little, and definitely helped with chronic fatigue but prednisone is not a good drug to be on long-term and the side effects aren't worth it.
- Protonix Working / Worked
- I have sever acid reflux as a result from one of my surgies and this helps most of the time.
- Morphine Working / Worked
- One of the reasons I am on this is for my severe, chronic joint pain, which is primarily in my legs. Without it, I would not be able to walk.
Close Post-Traumatic Stress Disorder
I was diagnosed over two years a go with PTSD due to have so many major surgeries and near death experiences.
Treatments
- Supportive Care Working / Worked
- Seeing a therapist helps but I have to admit I'm not one that opens up easily
- Lexapro Working / Worked
- I would be lost with out this medication! I have been on it for almost two years now.
Open Pancreatitis
I had a large pancreatic tumor removed in 10/05. It was so rare the surgeon sent parts of the tumor to pathologist all over the US. They still do not know exactly what it was. I had a full Whipple procedure where they removed a third of my pancreas and my gull bladder, then re-arranged my digestive tract. I recently had a severe case of pancreatitis that left me on the hospital for three weeks. I have constant abdominal pain, especially when I eat.
Treatments
- Demerol Not Working
- Allergic to.
- Morphine Working / Worked
- Helps with the pain in my abdomen due to scar tissue and for pain related to other health problems.
- Protonix Working / Worked
- I'm on Protonix 40mg twice daily, and it works for the majority of the time. My acid reflux is quite severe due to the surgery.
Open Chronic Pain
I have been getting pancreatitis every 4 to 6 weeks since 1/07. (I had a complete Whipple in 10/05 to remove a tumor on my pancreas.) The pain in my abdomen is beyond severe! I've had a couple major abdominal surgeries and I'm filled with scar tissue and adhesions. I also have horrible pain in my joints due to an autoimmune disorder. My knees don't always support me. I often wake in the middle of the night because my leg muscles cramp up. Pain is my life... pain everywhere!
Treatments
- Heat Not Working
- Hydrocodone Working / Worked
- Worked great for after the Whipple surgery. Was on it for six months.
- Meditation Somewhat Helpful
- I'll try breathing exercises when pain is at it's worse. It just prevents me from hyperventilating.
- Morphine Working / Worked
- I use a combo of long-acting and fast-acting. Really helps!
- Naproxen Not Working
- Didn't work.
- Nerve Blocks Not Working
- Celiac Nerve Block... made me much worse and caused severe back pain.
- Neurontin Considering
- Pancreatitis is a side effect... can't use!
- Oxycodone Not Working
- Didn't work.
- Physical Therapy Somewhat Helpful
- Worked in the beginning, but now it makes me much, much worse!
Open Heart Attack
I'm 29 years old and in 3/07 I was diagnosed with Supraventricular Tachycardia. My cardiologist told me I had a large hole in my heart and I could have died at any moment in my life. The hole was repaired, but seven months later I was diagnosed with a type of Heart Disease called Neurocardiogenetic Syncope. I'm constantly sweating, weak, dizzy (running into walls), seeing double, can't catch my breath, etc. My heart is so bad I can't be put under for the surgery I may need for my pancreas.
Treatments
- Metoprolol Working / Worked
- Helps mildly. I cant have too high of a dose or my blood pressure drops too low.
