14 years ago I was the picture of health , happily married and a stay at home mom to my 3 beautiful children until they were all in school and I started working in the food and beverage dept for a resort hotel.
I was just 34 when I woke one February morning feeling like I had the flu. After a couple of weeks, when my symptoms did not subside, my doctor referred me to a rheumatologist. I was diagnosed with both Rheumatoid Arthritis and Fibromyalgia in 2004. By 2005 I was diagnosed with Sjogren's Syndrome which affects the endocrine system causing dry eyes, mouth and skin. Also 2005 Avascular Necrosis aka AVN, also showed up. It's a nasty bone disease that denies blood supply to the ends of the long bones such as femurs, humorous and tibiae causing the bones to slowly and painfully die. It was at that time that I was ordered to quit my job which gravely impacted our 2 income household. I had to wait 6 months after being unable to work before I could file for disability. I qualified for 100% disability the 1st time I applied and it took just 2 months for approval. The bad thing was that my disability payments were and still are just $600mo. I had 3 surgeries in 2005 called Core Decompressions on both hips and each shoulder.
By January 2006, my husband of 15years left suddenly. Please don't judge him because I realize that some people aren't meant to be caretakers and living in a home where love runs only one way is worse than living alone. He stayed married to me for another 4 years so I could have health insurance and he never turned his back on our children.
In 2007 I was diagnosed with Lupus when I woke with blisters all over my face. I continued to have good days and bad days, sometimes not knowing which autoimmune disease to blame.
From the beginning, I was treated with all sorts of infusions like Remicade and Orencia, then injections of Enbrel then Humira. In addition to disease targeting medications, I was also on steroids, diuretics, methotrexate, anti-depressants, anxiety medication and pain killers, which gradually increased my tolerance to both the pain and medication and eventually I was and still are prescribed opiods. Luckily I never had any adverse cognitive effects of any of these medications and continued to drive with hand controls since 2006.
Fast forward to2011- when things got severe, the Lupus became systemic and now called SLE (Systemic Lupus Erythematosus) I was hospitalized for Lupus Pneumonitis which has put me in ICU 3 times! It was also 2011 when I had my 1st hip replaced and just 8mo later in 2012 my other hip totally collapsed. After that hip replacement I found out that tha AVN had spread to my knees. The surgeon refused to replace my knees stating that I was "TOO YOUNG" Hmmph not too young for my hips to colapse but too young for my knees? It was that moment that I realized I must advocate for myself!!
2013 began a rollercoaster of illnesses and surgeries. Jan 1st..no joke, I woke up with a huge fluid filled blister on my finger, my doctor said it wasn't uncommon with Lupus. The blister turned black within a couple weeks and I needed emergency surgery to save it. The surgeon cleaned away all the dead tissue and I spent the next few months having to clean the wound and make it bleed so that new tissue would grow. The pain was excruciating but worth keeping my finger.
April 2013, I don't know why things happen in my sleep but they always seem to because I woke and was paralyzed on my left side. I had a crushed C5 vertebrae so I had emergency surgery once again then had to lay on my back wearing a neck immobilizer for 3 months. By this time my oldest 2 children had graduated HS and my youngest was living with his dad, so I was home alone. My neurosurgeon said I also had Spinal Degenerative Arthritis and suggested I move 6 hours away where I would get family support since I still needed back surgery.
October 1st, ONE DAY after my move, my knee buckled and I fell hard and I figured it was a torn tendon or something. The new orthopaedic surgeon took one look at my MRI and quickly turned off the imaging screen, then I was told that due to disease progression I would never walk again. I had already been on forearm crutches for 7 years, now suddenly I was in a wheelchair. After a few months of searching the internet, I found a bone disease specialist that would help me. He replaced both my knees at once and said I would be back on crutches in no time. The day after surgery, I had an infection in my right knee which kept me hospitalized for 8 WEEKS! After painful grafts and hyperbaric chamber treatments, my leg was saved and I was back on crutches. I never did get the much needed back surgery because when you get knee replacements, you don't get new kneecaps or tendons, and my knees continued to buckle eventually crushing both patellas. Without strong knees I was no longer a candidate for the back surgery I left home for.
Later in 2014 I was diagnosed with Glaucoma and Cataracts and had 2 eye surgeries to remove the cataracts and place stents in each eye
Between 2015-16 I had 5 surgeries to place an intrathecal pain pump in my stomach and spine. The catheter kept dislodging causing spinal fluid leaks and debilitating headaches. A final surgery was done to remove a piece of my spine, place the catheter and "cement" it in place then replace the bone.
Also in 2015 I was diagnosed with severe Osteoporosis, Hyperparathyroidism and 2 rather large Kidney Stones. The right kidney stone is/was 8mm and the left 5mm. I have been on FORTEO, a daily injection to help healthy bone growth. I can only take this for 2 years and whatever good it does is as good as it will ever get. Due to my thin bones, I got 3 stress fractures in my right foot, then due to a knee buckle I broke 4 bones in my left foot, Imagine being in 2 casts at the same time! My right foot began to grow a large calcification which needed surgery in July of 2016 to aleve the pain the growth was causing. The surgery was successful but I had an allergic reaction to the internal sutures. A cast on the left and surgery on the right made the ordeal last over a year!
In March of 2017 I suddenly became very ill.... chills, vomiting, diahrea and fever. 3 days later I was passed out on the floor and my dad scooped me up and rushed me to the hospital. I was diagnosed with C-Diff, pneumonia, RSV, Shingles and fluid on my lungs. the very next day I couldn't breathe and strained just to speak.. it all happened so fast, then I guess I passed out. When I woke, I had something uncomfortable in my throat so I pulled it out..it was an intubation tube. I had been in a coma for a week caused by sepsis and septic shock. 1 day after I woke up I became a Grammy! My total hospital and rehbilitation stay was 45 days!
Less than a month later, my love drove the 6 hours to pick me up and move me back home. I have been happily in his arms ever since. God played a role in my leaving home to begin with but He played a larger role in bringing me back.
September 2017- my knees have been constantly buckling without warning. On a Sunday morning I was sore in my left knee, by Monday morning I couldn't even lift the leg off the bed. I was fortunate to get an appt right away. My doctor aspirated about 50cc's of very thick yellow gunk from my knee and sent me to the hospital for direct admit. When I got to the Hospital, and orthopeadic doc aspirated another 50cc's of the same nasty gunk. He started a central line for IV antibiotics and 3 days later I had surgery to remove my prosthetic, remove bone shards from the broken patella and flush out infection. He placed a cement spacer where there used to be a knee and told me I was non weight bearing until my next surgery. It ended up being 2 months and 3 opinions before my amputation Nov 29,2017. I needed upgrading to an electric wheelchair, and now my old car with 300,000 miles on her is struggling and the lift I had went belly up probably due to the weight of the new chair. I'm still dependant on everybody else but God has made sure that I'm safe, loved and right where I'm suppose to be..
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