PHARMACIST STEVE

Jennifer Burns Hill a story of tragedy and a deep love story … And How I found myself again. I am the youngest of 6 the only girl. Born on April fools day. I seemed to have to beat the odds while in my mother’s womb. My mother unknowingly had hepatitis B. In her 7 Th month she had emergency appendectomy. 54 years ago this was serious risk to both Myself and my mother. The surgery went well however, I was born a few days later prematurely. Turned out Drs realized after the surgery my mother and father had hepatitis B. Unable to care for me I was raised between marternal grandparents and a catholic nunery. A sickly little girl my entire life. Ear infections step throat. Born with deformed feet. My first surgery at 12 years old. I had to wait for bones to fuse before reconstructing my feet. Pins installed broke my bones and resets , bunionectomy. 3 surgeries every Christmas vacation I was Always in a cast. I was definitely a tomboy And was an amazing skateboarder but tore 10 ligaments and my aqillies tendon 3 time while skateboarding. Again in a cast for many months. At 17 I was doing stunts and I jumped into an airbag and jumped to soon and hit the ground 40 feet high ! Herniating my lower lumbar. 2 weeks in traction and my first experience of epidural blocks for a year. Already my young life fraught with pain At 20 I started feeling a tiny lump in my shoulder… a pea size but could hold it and move it around. Was accompanied with severe pain! This started my constant trips to emergency hospitals. As a celebrity hairdresser I was unable to cut hair. A terrible loss to my identity. Over a years period of time it became a size of large tomato. Whilst in emergency once again the Dr injected steroids into “ lump” …. Within 3 weeks the “ lump” tripled in size! Piercing through the encapsulated tumor and spreading was immediate. Though I had begged for a biopsy this particular hospital said it would “ be to rare to be cancer in that area !” But tho and behold it was! During that year I also had a class 4 Pap smear and had 3 laser surgeries. I step below stage one cancer. 2 separate cancers! I also suffered constant kidney infections. Requiring 2 week hospital stays with I V antibiotics. Finally I was sent to the only cancer hospital this organization had They finally did a biopsy… And my life changed instantly! A rare muscle cancer. Rhabdomia sarcoma ! Usually only affecting children and usually boys. They removed huge tumor that was separating my collar bone and shoulder. They felt they got it all and no chemotherapy or radiation. 6 months later it came back with a vengeance, 5 tumors this time! I went from its probably a calcium deposit to “ having a major amputation at Shoulder would most likely be chance of survival ! – [ ] I refused! I a ceppted massive whole upper body radiation 5 days a week for 3 months. Almost 25 now … after radiation I became so sick I’d crawl to the bathroom! Foods suddenly made me very ill. I was told I had “ radiation sickness, and in several months I’d be back to normal. My right arm and hand turned purple and cold , yet felt like I had acid thrown on it ! Like a thousand bees stinging me. My arm would have horrible contractions! I had never felt such pain ever! I went to the emergency hospital constantly. Again, I was told it was post surgical pain and I’d return to normal soon … Being flagged even more now as “ a drug seeker!” A horrible stigma attached to chronic pain patients! All I wanted was my health and life back. I never returned to my prior self! Unbelievable burning pain and massive contractions. Chronic fatigue syndrome… I sought our alternative drs. Went on Candida diet that I’ve been on ever since. I had to relearn how to use my right arm twice. To lift it , write , tie my shoes, basically everything. Somehow I was able to return to cutting hair, though very painful and battling chronic fatigue, I excelled in my career once again. However the pain and contractions again became to much to bear! I kept going to emergency begging now “ to cut my arm off !” By now I was labeled “ a drug seeker!” Though every time I did go to hospital, they’d give me a Demerol shot … no home prescriptions. I had crps but drs knew and did not tell me for 10 years! They had small notation I had “ hands and wrist syndrome “ one of many names for RSD/ crps ! By time I was diagnosed it spread to entire right side of body. I found this note while hand delivering records to another department of hospital. I quickly browsed through. During my second cancer surgery they had given me a bone scan without doing a pregnancy test. Turns out I was 16 weeks pregnant. I was referred to an abortion clinic in late term abortions. I struggled. My cancer was back and drs told me my child would be mentally retarded , blind possibly deaf and cleft pallet. It took a month for me to choose my life over my child’s.

took a month for me to choose my life over my child’s. Something that haunts me today. I’m childless. Once again I had become to disabled to cut hair. I was now permanently disabled. I had a full hysterectomy 2 weeks after my marriage. I digress.. let’s move back to next Unthinkable thing. Now 36 I did get pregnant and had spontaneous miscarriage. No treatment afterwards. I had produced Breast milk and a simple pill to dry up milk would have prevented the months of a picc line and IV antibiotics I ended up enduring. Lactoria mastitis. Infection from the dried breast milk. Now antibiotic resistant no antibiotics would stop infection. Hospitized I had a picc line put in trying to save my breast. Gangrene set in and I lost third of my breast. A double mastectomy had to be done. With Doris flap ( taking back muscle) I met my husband at a get well soon Party 2 weeks before surgery. He didn’t realize “ I was the girl the surgery was for “. I didn’t look like a such a sick woman… crps is called “ the invisible illness “ A 36 double D really an E cup naturally. He couldn’t keep his eyes off my breast. I was already walking with a cane as I was diagnosed with crps 10 years after my 1 st cancer surgery. My cane under the table, he asked if we could “ go out in date and have some fun.” I was attracted to him but turned off as I was struggling with my impending mutalating surgery. I lifted my cane and said “ I’m the woman this party is for!’ He felt terrible and asked to make it up to me. I refused but at his insistence I told him hospital and date. Never thinking I’d ever see him again! On the day of surgery 10 hours.. Scott was waiting in post op room with 2 dozen yellow roses. He just took it Iown to come every day! Drs nurses all knew him. But I didn’t…! One day dr began to change dressings. Scott just walking in. Dr says “hey Scott , wanna see my work ?” I hadn’t even seen what lie under my bandages! I mouthed to Scott to stay as he began backing out of room. I never looked down! I stared intensely at Scott face ! Would he cringe? Be disgusted? He mouthed “ your beautiful!” I mouthed back “ your going to be my husband!” He mouthed back “ I already know!” That was it … we were engaged! 3 months in hospital and having once again to relearn to use my arm. Scott came every day! Bringing flowers and food from my favorite restaurant! We finally kissed! While he was showering me and washing my hair! He did this a few times… here I was naked. Tubes coming out of 3 areas of my chest and back! He tenderly took care of me ! I fell hopelessly in love! Who would have thought id fall in love in the hospital?! He went through a devastating divorce. And had just opened his 3 rd men’s clothing store. But was sleeping on friends couches. – [ ] It was perfect… I needed nighttime care taker. He needed a solid place to live. – [ ] He immediately moved in with me when I was released from hospital. He changed my picc lines hooked me up to iv antibiotics, and gave me my morphine push medication. Gave me my tpn feedings. I went down to 89 pounds! In electric wheelchair a virtual shut in. – [ ] I gave him my car to get to work. We were a team! – [ ] 10 months later we were married. NBC filmed our wedding. On show “life moments “. The next year I spent 90% of time in hospital! My hysterectomy botched … second hysterectomy performed. Removing last Fallopian tube. And vaginectomy. Now with no breast and my female bits and pieces gone , I struggled “was I even a woman anymore?!” . Reassured by Scott I was beautiful helped. But my identity stolen. Who was I now? After a year in hospital I had to learn to eat again, walk , use arm yet again , Scott would take me to sushi joint and I’d eat sashimi it was easy yo digest and I could keep it down! After a few months dr removed my gj feeding tube! I had successfully learned to eat again ! Something Drs said is never do and I’d need a bag removing my stomach! I tried to find myself again. Now Scott Hills wife and not “ Jennifer Burns “ ex celebrity hairdresser “ A happy moment was when I carried the Olympic torch. The second happiest event in my life. As community hero. Learning to walk with forearm crutches. Learning how to accept “ the new me “ was very painful. Must admit this took years. I also had severe head trauma from car accident. Small stroke one of 3 .. Bell’s palsy a cadaver bone transplant. 1997. Almost lost lost left oeye. Mouth droops still today … Yes all these things happened ! And I’ve had a dozen second lives ‘ July 3 rd I kissed my husband goodnight… had been in level 10 pain for a week… sleep deprivation. I remember hurting… next thing I wake up in ICU on life support! My husband found me barely breathing. By the time paramedics got here I aspirated and stopped breathing! Minutes from death. My blood pressure dropped My blood sugar 11 ! And Had grand mal seizure

Yes all these things happened ! And I’ve had a dozen second lives ‘ July 3 rd I kissed my husband goodnight… had been in level 10 pain for a week… sleep deprivation. I remember hurting… next thing I wake up in ICU on life support! My husband found me barely breathing. By the time paramedics got here I aspirated and stopped breathing! Minutes from death. My blood pressure dropped My blood sugar 11 ! And Had grand mal seizures. It was then I decided to finally “ come out of the closet “ and start talking about crps! I would talk about my cancer… but since no one ever knew what Crps/ RSD was…. I shoved it deep into silence. I finally found “ my purpose !” Starting MY Crps/ chronic pain support group “ Crps a life’s journey “ It’s finally taking off. I’ve found my happiness, helping my pain community ‘! I’m writing letters to government officials and news media To tell “ our side of the opiate crisis “. I try and honor our fallen warriors who committed suicide. To make their deaths from senseless to advocacy and meaning. As Founder of “ Crps a life’s journey “ I’m a New advocate … Personally helping my members . sometimes talking hours to a suffering pain patient, when no one else will lend an ear or shoulder to cry on. All whist going though ketamine Monthly needle therapy. Sleep deprivation. Constant pain… If not me , who ? I’m learning and growing and excited to where my journey leads me. Available for interviews and speaking engagements

Filed under: General Problems