Julie's Healthcare Fund
I am a mother. I am a wife.
I am living with an incurable and a debilitating chronic pain ailment called: CRPS/RSD.
My hope is that in sharing my story, I am not only able to help my husband, our family's sole provider, pay for my rapidly increasing medical expenses. I also would like to educate people about my devastating and incurable disease: Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). I thank you in advance for taking the time to learn about my situation and read my story. 
My name is Julie Kreiger. I am a wife and a mother of two daughters. After being a stay-at-home mom for eight years, I began to work at my daughters' elementary school and instantaneously found my calling in working with children. At that time, I decided to take the first step in pursuing a career suited to this passion and enrolled in community college while working at the school. My ultimate goal was to earn a Bachelor of Arts in Psychology and apply this to working with troubled youth.
Then my life dramatically changed: on March 16, 2000, I was involved in a multi-car accident caused by an oil slick on the road. With both of my girls, then ages 9 and 6, in the car with me, I was thankful to see that neither was seriously injured. However, I had immediate pain in my foot, back and neck which did not go away.
Our car was totaled. When we filed our insurance claim we learned that, due to the nature and cause of the accident (oil on the road), the California Highway Patrol had deemed it an "Act of God". Our insurance gave us a check for the car and nothing else.
After the accident, I went to the ER with my husband and my girls. This marked the first time that my condition was misdiagnosed. We know now that CRPS is extremely difficult to diagnose, and unless a doctor is specifically trained to look for it, there is little to no chance of an accurate diagnosis. These doctors were not looking for it, and instead diagnosed me with a heel bone bruise. They put me in a walking cast and sent me on my way.
Believing that my excruciating foot pain was commonplace for that particular injury. I continued to work as a TA at my daughters' school while pursuing my Psychology BA degree. Which I was able to receive in spring of 2005 (above is my graduation picture).
The pain not only persisted, it got much worse.
During the next four years I was misdiagnosed again and again. I wore a walking cast on my right foot, as the pain was too intense to walk without it. Was also put in a non weight baring cast for over 3 months
(Below are pictures of my foot during a bad flair.) 
I saw a new doctor, who studied neurology and was a podiatrist who noticed in two of my CAT scans (which was missed by the radiologist) that I had a hairline fracture in my foot. He operated on my foot and afterwards I had never felt pain like this before. It felt as though someone put shards of glass and hot oil in my foot. I saw my doctor afterward and I was finally given the bad news. I have CRPS! If you have never heard of CRPS (Complex Regional Pain Syndrome) it is also known as RSD (Reflex Sympathetic Dystrophy). Below is a link which explain what CRPS/RSD is in detail.
http://www.rsds.org/2/what_is_rsd_crps/
CRPS is difficult to diagnose and there's "no cure!" At least, that's been my case. My nerves started firing pain signals to my brain and haven't stopped since 3/16/2000. CRPS has spread throughout my body. I am in pain 24 hours a day.
My various pain doctors prescribed pain meds, from 2005-2009. By 2009 I was on 175mcg Fentanyl patches, 180mg of Methadone, 80mg of Oxycodone and various other drugs to help with the nerve pain. I lost my memory during those years, as well as precious time with raising my girls. With the help of my new pain doctor and a fierce detest for the way the opiates made me feel I began titrating off my opiates in 2009.
(One of many hospital stays in 2014)
During the time of titrating off these opiates, my CRPS began to affect my autonomic nervous system.
My Gallbladder stopped working and was removed in May 2011, unfortunately my CRPS pain spread to the surgery site. In 2012, I was done with titrating off the opiates and wasn't eating like I used to. By then I had lost roughly 140 pounds. After doing an empty study test of my stomach, the doctors discovered I now have Gastroparesis (paralisys of the stomach). I was in and out of the Hospital due to being malnourished, so I had a PICC line put into my main artery in my arm and was getting 1500 calories of nourishment daily. Unfortunately, I got a blood clot in my arm and my GI doctor suggested I have a Jejunal Feeding Tube inserted into my small intestines.
(During one of my hospital stays)
August of 2013 brought the surgery to install a feeding tube, which keeps me nourished with predigested formula, thanks to my pump I'm hooked to roughly 22 hours a day. Although I was still able to eat and drink at that point, my eating was very limited and unfortunately my body didn't respond well to the medications which helps with Gastroparesis.
In the middle month of April in 2014 I started vomitting on a daily basis. Everything I ate or drank would eventually come back up. Dr's told me to keep eating to see if my stomach would "wake up" and start working again. I tried and my stomach rejected everything. Since my doctors were concerned about my electrolytes, I had IV's changed every three days for hydration, until my veins in both arms collapsed. My doctors then suggested a power port to be installed in my chest to a main artery that goes into my heart. On the day of the procedure, I found myself back in the ER. I didn't realize I'd been throwing up my medication I was taking by mouth. One of those medications is Baclofen and should never be stopped without a Drs care and supervision. I fell into such horrific withdrawals due to Baclofen, I spent 3 days in the hospital. I ended up getting my power port in at the end of June.
The vomitting persisted. At the end of July I began vomiting blood and found myself back in the Hospital for 16 days. During my stay Dr's tried injecting Botox into my Pyloric valve in my stomach to see if it would allow food and water to drain properly from my stomach into my intestine. Unfortunately my body didn't respond and I continued to vomit daily. My doctors were at a loss. One suggestion was to either do a Gastric Bypass surgery or remove my stomach completely. One of the issues with CRPS is whenever my body is cut or hurt in any way, CRPS will attack the nerves in the area and the pain never goes away. Surgery in my case, due to CRPS is on a Life or Death basis.
After the GI Drs and surgeons met they suggested to put a Gastric Tube through my stomach wall so my stomach juices could "drain" into a container outside my body by gravity and a suction pump I am hooked up to which decompresses my stomach. This was done at the beginning of December. While this has alleviated the daily vomiting, I still have days where I vomit. CRPS has compromised my Immune System. I recently spent another 11 days in the hospital due to pleurisy and virus.
So now I have a j-tube in my intestines for feeding, a port in my chest for hydration and a g-tube in my stomach for drainage. I have gone from being an energetic, healthy, physically strong woman to being completely homebound. All of this is keeping me alive.
CRPS has taken my strength away to the point that I cannot setup, change or perform any of the things I have mentioned on my own. Since it has spread throughout my body and has caused weakness, as well as pain in all of my limbs, I rely heavily on my husband and daughters. My husband Conrad works and has been taking care of me every day since I lost the ability to take care of myself or my family the way I used to.
We live on my husband's income alone. Although The Disability Court found me to be permanently disabled since 2004, I do not receive any Disability payments, only Medicare. Unfortunately my previous work didn't pay into SDI, due to working part time. Writing this is not only difficult physically, it's also emotionally difficult as well. My medical bills have been on the rise due to all of my Hospitalizations, as well as all of the machines I'm on to keep me alive. I'm also afraid to admit to myself I'm probably going to be in need of a Home Health Care professional to come in, to take some of the burden off of my husband so he can concentrate on his work.
I'm not one to put myself out there, however I see the stress in my husband eyes of taking on literally everything. We used to be a team working together with a common goal to help our family. CRPS took that from me.
(February 9, 2015)
