#burningforacure

[ashleyhlovestay]

My "letter" to @taylorswift :

My "letter" to @taylorswift :

Hi Taylor!! I wanted to tell you a little about myself and how your music helps me. I saw you at #repTourStLouis and you were incredible as usual! My dream is to meet you someday. You have gotten me through my constant Reflex Sympathetic Dystrophy pain of 16 years. The rep Tour gave me something to enjoy and temporarily forget about my pain. 

I got RSD at age 12 and am now 28.  I tore 2 ligaments in my right ankle and it never healed. It developed into RSD. I now have it in my right foot/leg, left foot/leg, right arm/hand, left arm/hand, back, and neck. I have a pain pump and a neurostimulator but I still have horrible pain everyday. I also am on a lot of medications for my RSD and other diseases like Rheumatoid Arthritis and Trigeminal Neuralgia. Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome is where the brain is telling your body you are in pain when there is no injury. The nerves are misfiring. RSD pain is rated higher than natural childbirth and amputation on the McGill pain scale.

The only thing that puts a smile on my face is listening to your music. Your music helps me to move more and to push through the pain. On the 1989 World Tour, I had to go in a wheelchair because 6 days before I had my pain pump implanted inside me. I had a complication of a spinal fluid leak so I couldn't sit up or stand. The doctor wanted to wait to see if it got better so I waited but on the day you were in St. Louis, I begged my doctor to do a blood patch so I could go to the concert. He did so I went in a wheelchair.

I know the world is pretty crazy right now. My only dream is to meet you someday. Taylor, you've gotten me through some days where I didn't want to be alive because of the excruciating pain I was in. I'm loving "Lover", "folklore", "evermore", and now "Love Story: Taylor's Version". Your music just speaks to me and helps me forget that I live in pain.

It would mean everything to meet you someday. I love you so much Taylor and I will ALWAYS stand behind you! I can't wait to see you in concert again! 💜

-Ashley Hettenhausen

@taylornation @nhett

[ashleyhlovestay]

[ashleyhlovestay]

Just edited this with the help of @picsart in a @taylorswift "Lover" theme. I'm no pro but it was fun. @taylornation 🎉🦋🌈🎼 I had my ablation done today on my right lower back. We got there and had to wait an hour because the surgeon was called into surgery. So while we waited, the only thing that got me through waiting that long in pain was listening to @taylorswift 's album "Lover". Everything else went as planned. They stuck me like 8 time and gave me an injection of Toradol for the soreness. I'm not looking forward to the ups and downs of pain for the next few weeks. #Ablation #ReflexSympatheticDystrophy #CRPS #burningforacure #RSDsucks #PicsArt #LoverMusicVideo #Lover #LoverReleaseDay #LoverOutNow #TS7 #TaylorSwift #TayLurking #HelpAshleyMeetTaylor #GetAshleyToTaylor #MakeAshleysWildestDreamsComeTrue #ME #StreamME #YouNeedToCalmDown #YNTCDOutNow #TheArcher (at Belleville, Illinois) https://www.instagram.com/p/B1hgZGnHX5J/?igshid=17nv3zfu31ivl

[ashleyhlovestay]

With the start of the "Lover" era and the album release coming soon, I wanted to share this again. My dream is to meet my idol @taylorswift . I have a chronic pain disease called Reflex Sympathetic Dystrophy so I live in excruciating pain everyday. I had to give up nursing school because of this disease. I also have Rheumatoid Arthritis and Trigeminal Neuralgia. I have a pain pump and a neurostimulator along with a lot of other medications. My story is in the first picture. Taylor and her music gets me through the daily flares. I don’t have much to look forward to but meeting Taylor would help me so much. Please tag Taylor and Taylor Nation and share this, thank you!! Please help me get this to Taylor! Thank you so much! 💜🦋🌈@taylornation #HelpAshleyMeetTaylor #GetAshleyToTaylor #Lover #TheArcher #YouNeedToCalmDown #YNTCDOutNow #StreamME #MEOutNow #TS7 #TaylorSwift #TayLurking #RepTourStLouis #ReflexSympatheticDystrophy #CRPS #burningforacure #RSDsucks (at Belleville, Illinois) https://www.instagram.com/p/B0xKtFsnjIz/?igshid=18k1zoqg1o882

[ashleyhlovestay]

Since we're celebrating #OneMonthofME , I wanted to talk about what #MEmeans to me.  ME means that I can accept myself for who I am and the flaws I have.  I'm not perfect and will never be perfect.  ME means I accept the RSD I have because it's a part of me but it doesn't define me. I'm beautiful inside and out. I never thought I was until Taylor released "ME!".  To me, "ME!" is all about individuality and accepting yourself. Thank you @taylorswift for releasing such an amazing song!  I love you so much! 😘🌈🦋 @taylornation @nhett #StreamME #ListenToMe #TayLurking #TaylorSwift

[ashleyhlovestay]

My dream is to meet my idol @taylorswift . I have a chronic pain disease called Reflex Sympathetic Dystrophy so I live in excruciating pain everyday. I had to give up nursing school because of this disease. I also have Rheumatoid Arthritis and Trigeminal Neuralgia. I have a pain pump and a neurostimulator along with a lot of other medications. My story is in the first picture. Taylor and her music gets me through the daily flares. I don’t have much to look forward to but meeting Taylor would help me so much. Please tag Taylor and Taylor Nation and share this, thank you!! Please help me get this to Taylor! @taylornation #HelpAshleyMeetTaylor #TS7 #TaylorSwift #TayLurking #RepTourStLouis #ReflexSympatheticDystrophy #CRPS #burningforacure #RSDsucks (at Belleville, Illinois) https://www.instagram.com/p/BwcwB98H1Zk/?utm_source=ig_tumblr_share&igshid=1cuowuip39cjd

[ashleyhlovestay]

Happy 31st birthday @taylorswift !! Where do I start? You have inspired me so much. From day 1, since "Tim McGraw", I felt like we were friends and like I could relate to you. I love all of your music so much. From "Our Song" to "Fearless" to "Enchanted" to "Holy Ground" to "Style" to "Getaway Car" to "Cruel Summer", to "betty", to "willow", I was drawn in, every single time. (Those are my favorite songs from every TS album) 😉

Taylor's music helps me through my chronic pain disease called Reflex Sympathetic Dystrophy.  I don't know where I would be without Taylor. So thank you so much Taylor for putting your music out there for us and for being you.  You carry yourself with such poise and elegance that I look up to.

So I want to wish you a very happy birthday and celebrate big Tay!!! Love you so much @taylorswift !! 💖🎂 @taylornation @nhett

[ashleyhlovestay]

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. #ReflexSympatheticDystrophy #RSD #ComplexRegionalPainSyndrome #CRPS #burningforacure (at Belleville, Illinois) https://www.instagram.com/p/B5GkSePnlhK/?igshid=1qwfmcjesolcw