Ashley's Journey through RSD

11/25/2021

This year, the holidays don't feel quite right. There is one less seat at the table, the one in which my grandma would have sat. It is the first Thanksgiving without her. Granny always loved the holiday season; she enjoyed the lights and just celebrating as a family. She took pride in every member of her family. No one was left out, no one was treated better than another, and no one was left doubting her love....

This year, the holidays don’t feel quite right. There is one less seat at the table, the one in which my grandma would have sat. It is the first Thanksgiving without her. Granny always loved…

10/05/2021

Happy World Teachers Day to all teachers, professors, and administrators out there! For those of you who don't know, I am a preschool teacher as well as the assistant director at my center. I know firsthand just how stressful teaching is, but I also see how rewarding my job is. I see it in the little things, academically and socially. From learning basic concepts to improving social skills and problem solving, I relish in the personal growth of each of my students....

Happy World Teachers Day to all teachers, professors, and administrators out there! For those of you who don’t know, I am a preschool teacher as well as the assistant director at my center. I…

04/13/2021

Missing you so much tonight granny. I wish I could turn back time to one of these pictures and hug you like this again. 😭 I was happiest when I was around you. You were always the person to go to when I had a problem or if I just needed a laugh or hug. Thank you for always being there as a grandma should. You were also my best friend and like my second mother. I hope you are dancing in heaven with grandpa. Love you forever and always granny!! 💞

11/17/2020

So with all the things going on with my granny yesterday, I forgot to post about my pain doctor's appointment yesterday.

Many of you know I have Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome. This is a chronic pain disease rated higher than amputation and natural childbirth. I have a pain pump implanted in my stomach which is connected to a catheter leading to my spine. It delivers pain medicine 24/7 to my spine which helps my pain.

Since I have lost over 100 pounds, My pain pump has moved and shifted so I went in to see if it can be moved to a different position. He told be he can move it higher or even put it in my back. So I'm thinking I will have it put in my back since my neurostimulator is on the left side. It was put in in 2015 so I'm actually due to have it replaced by March. So we scheduled my surgery for February 11th, 2021.

There's that update. Now we're just praying for granny. 🙏💗~Ashley

11/14/2020

My name is Nicole Hettenhausen and I am 24 years old. For over a decade, I have struggled with: major depressive disorder, generalized anxiety disorder, social anxiety disorder, panic attacks, and post-traumatic stress disorder as a result of long-term childhood bullying. Because of these conditions, my mental health has suffered greatly; I have had suicidal thoughts off and on since I was in junior high....

My name is Nicole Hettenhausen and I am 24 years old. For over a decade, I have struggled with: major depressive disorder, generalized anxiety disorder, social anxiety disorder, panic attacks, and …

11/03/2020

Today is National RSD/CRPS Awareness Day so I wanted to post about my Reflex Sympathetic Dystrophy.

I have had RSD for 14 years. RSD stands for Reflex Sympathetic Dystrophy and is a chronic pain disease that usually begins with some kind of trauma or surgery. Pain is the main symptom and is usually out of proportion to the original trauma. The brain is misfiring, sending pain signals even after the injury is healed. You feel like your body is on fire. It can spread almost anywhere.

I got my RSD in 2006 playing tennis and tore 2 ligaments in my right ankle and they never healed. My foot would be stiff and change all different colors like blue, purple, and red and was (still is) always ice cold. I couldn't put sheets on because of the excruciating pain. The doctor put me in a walking cast which now we know is the worst thing to do for RSD. You don't want to immobilize it. From then on, it continued to spread. I have it in my right foot/leg, left foot/leg, back, right arm/hand, and eyes. I am up most nights in pain. I went through lots of medications, nerve blocks, surgeries, and now have a spinal neurostimulator and an implanted pain pump. So I'm doing a lot better today. ~Ashley

03/01/2020

Today is National Rare Disease Day so I wanted to post about my Reflex Sympathetic Dystrophy.
I have had RSD for 14 years. RSD stands for Reflex Sympathetic Dystrophy and is a chronic pain disease that usually begins with some kind of trauma or surgery. Pain is the main symptom and is usually out of proportion to the original trauma. The brain is misfiring, sending pain signals even after the injury is healed. You feel like your body is on fire. It can spread almost anywhere.
I got my RSD in 2006 I believe playing tennis and tore 2 ligaments in my right ankle and they never healed. My foot would be stiff and change all different colors like blue, purple, and red and was(still is) always ice cold. The doctor put me in a walking cast which now we know is the worst thing to do for RSD. You don't want to immobilize it. From then on, it continued to spread. I have it in my right foot/leg, left foot/leg, back, right arm/hand, and eyes. I am up most nights in pain. I went through lots of medications, nerve blocks, surgeries, and now have a spinal neurostimulator and an implanted pain pump. So I'm doing a lot better today.~Ashley

02/05/2020

Just got done with my neurologist's appointment. So I have been having a zapping pain in the right side of my face ever since my chin/jaw surgery. I assumed it was my Trigeminal Neuralgia but wasn't sure. He tested my face and diagnosed the pain as Trigeminal Neuralgia. I have it in all 3 branches. He said the surgery is what flared it up. So he increased my amitriptyline dose to see if that helps the pain. If not he mentioned trying lyrica. He also diagnosed me with Small Fiber Neuropathy. He said that and the POTS go hand in hand. Hopefully the increased dose helps.~Ashley

11/20/2019

Just got done at my pain doctor's appointment. I had to do pain pump follow-up appointment. My pain doctor was asking me what I think has helped me get to this place and be doing so good. I told him I thought increasing the pain pump concentration and doing the nerve blocks/ablations has helped me. He said a lot of previous pain doctors put it in patient's heads that they are so crippled and can't do anything. Then he said, "I deserve all the credit for where I am today." This blew my mind because my pain doctor and I really disagreed on different things at first so for him to say that almost made me cry. He is going to leave my pain pump dose where it is right now. He wants me to continue my exercise, if I can a gym or water aerobics. I go back next week for my pain pump refill. I also just love his nurses and staff. They are so friendly and sweet.~Ashley

11/10/2019

My older sister, Ashley, was 12 years old when she was diagnosed with Reflex Sympathetic Dystrophy (RSD). She was enrolled in a summer tennis camp and twisted her ankle. For a while, my parents and the doctors thought it was just a sprained ankle and that it would heal by elevating it, applying ice, and isolating it. But they were wrong. [ 664 more words ]

My older sister, Ashley, was 12 years old when she was diagnosed with Reflex Sympathetic Dystrophy (RSD). She was enrolled in a summer tennis camp and twisted her ankle. For a while, my parents and…