How A Car Accident Led to a Rare Disease Diagnosis | Amber’s Story
A Series of Interviews With Chronic Illness Patients, Uncensored and Raw Truths About Life With Chronic Illness.
If you have a chronic illness, you know that each story is unique, including yours. I’m always telling my clients ‘No one knows you better than YOU’. Of course, in this experience, there are some very difficult experiences shared by many of us: at some point a doctor has probably told you ‘It’s all in your head’, You’ve likely been dismissed, your symptoms minimized and may have been made to feel as if your body is lying to you. It’s important to hear from others who might be going through something similar, to see how we are all different and most of all – to know we’re not alone in this struggle looking for validation, treatment and support in getting our lives back.
Keep reading to learn how our next guest Amber wants us to know about living with chronic illness…
How A Car Accident Led to a Rare Disease Diagnosis | Amber’s Story
Q: What brings you to the realm of chronic illness? How did it all start for you?
A: “Hello, My name is Amber and I am excited to be able to share my story with you. My Husband Shawn and l live in the beautiful state of Oregon. I love photography, thrifting, all things vintage, kayaking, all things tea and going on adventures with my Husband.
I have been on a 13 year Healing Journey all stemming from an auto collision in 2006, when headed to the Oregon coast to go Salmon fishing. We never made it. A Dump truck pulled out in front of us while attempting to turn around in the opposite direction on the freeway and we ended up in a t-bone collision. I have not worked since 2008 And have been on disability since 2011.
Ever since I have been living my “new normal” life with a Chronic Illness and trying to seek help from medical professionals as symptoms lingered and progressed. To read the entirety of “My Story” go to my blog at: http://www.makingitthrough4110.com/2017/12/my-story.html“
Q: What’s the most challenging aspect of life with a chronic illness?
A: “I think the most challenging aspect of life with a Chronic Illness is to try to paint a clear picture of what life is like on a daily basis. One may see you on a “better” day but may never see you on a flare day or when you are stuck in bed for days at a time. One may see you as you are pre rested prior to an event but don’t see you later on the ride home, when you get home and cant walk and are in excruciating pain. Even the days following when you are stuck in bed due to relentlessness fatigue. Most may have no idea what you are truly living with as you try to function as normal as possible. We smile through the pain and push through when we have crossed our energy limit for the day. Another challenge of living with a Chronic Illness is dealing with isolation. I am mostly housebound, unable to work and unable to go to church. Finding support and understanding can be challenging.
I deal with chronic wide spread pain, fatigue, stiffness and mobility issues. When the fatigue becomes worse I experience mobility issues ranging on a spectrum of one leg dragging, shuffling both legs, trying to drag both legs across the floor, to not being able to take any steps, stand up on my own or move at all. I become stuck and can’t take any steps or move. I have no physical energy to walk. Extreme Stiffness of my spine, legs and limbs accompany the pain and mobility issues. I also deal with noise and visual sensitivities that increase all of the symptoms. I get over stimulated pretty quick in busy environments. Physical fatigue and brain fatigue, “Brain Fog” also play a big role. Its like I hit a brick wall and can no longer take in any new information. When I am at my worst I often find it takes extra effort to speak and to breathe in and out. I don’t have enough energy to talk. It physically hurts my inner system to take in breaths and to breathe back out. When I am at my worse my Husband has to help me move to the bathroom and then physically lift my legs into bed. After lots of rest I return back to my “normal.” I use a wheel chair in big stores as we grocery shop and a walker in smaller in smaller stores if able or around the house when needed.
A link to a short clip of myself trying to walk, at the end I can’t take any more steps or move and need help.
Q: What has been something rewarding or positive that has come from your chronic illness experience?
A: “One rewarding aspect that has come out of my Healing Journey of dealing with chronic Illness is compassion for others who are also suffering. My specific passion has been to try to spread encouragement in the form of support, confidence and hope to others who are going through similar situations or just a tough season of life. I have struggled to find a place to both give and receive encouragement on my journey so as a result “The Community of Encouragement” group on Facebook:
and an account on Instagram @communityofencouragement with the same name was started.
Another positive aspect from living with a Chronic Illness is that pain and suffering can be a teacher. I am a doer by heart so living with a Chronic Illness has taught me to slow down and enjoy the simple things in life. I have learned to be intentional in everything I do because of the lack of energy. I have discovered and learned the importance of gratitude and seeking out things every day to be thankful for. I have also had to discover the things in my life that spark joy and keep them close to me. I have had to learn to go with the flow on flare days and just ride it out until I am able to get out of bed again. Character growth in the areas of patience, perseverance, kindness, compassion are also developed living with Chronic Illness. I have learned the quickest way to combat the blues is by simply trying to help someone else whenever possible. Another positive aspect of dealing with Chronic Illness pain is that it has kept my Husband and I close.
Q: What are some things you wish people understood better about your illness?
A: “Although I have been living with chronic pain and illness for over 13 years. My actual Chronic Illness diagnosis is very recent. To read the last year and what led up to me to finally finding help and a diagnosis go to my blog “The Story Continues” at: http://www.makingitthrough4110.com/2019/05/the-story-continues.html
I was officially diagnosed with Stiff Person Syndrome on May 22, 2019. SPS is a rare one in a million diagnosis. It is a rare acquired neurological disorder. The exact cause is unknown, it is believed to be an autoimmune disorder. My new primary doctor is sending me to John Hopkins in Maryland to be seen by Dr. Newsome in October. For more information on Stiff Person Syndrome visit: https://rarediseases.org/rare-diseases/stiff-person-syndrome.
I would like for others to understand that living with a Chronic Illness is very hard, especially Stiff Person Syndrome. I struggle every day. Every day is a different experience. Every day I wake up I feel unrested and in pain. I have learned to take inventory of symptoms, regroup every morning and go from there. If getting up to go to the bathroom and I physically can’t walk or my walking is slowed down I know it is going to be more of a resting sort of day or a stuck in bed kind of day. If my walking is my normal I know that I can be up and do more things around the house. I also have to take into consideration the fatigue and the Brain Fog. From the very beginning I never really wanted sympathy, I have just wanted support and understanding. I live in a constant cycle of better days, to bad flare days and everything in between.
I would especially want others to know that there will never be a way to fully describe and put into words what the reality of a bad flare day really entails. There is no way to fully grasp and explain in words the intensity of the relentlessness fatigue, brain fog, excruciating pain, stiffness, and pain in trying to walk or the feelings associated with not being able to move or take a step forward. There is no way to put into words what is fully going on when you get the point of not knowing what to do with yourself. There is no way to see an invisible illness. That is unless you have lived it or are living it.“
Q: What are some of the best techniques or strategies you’ve used to manage symptoms?
A: “My top “Go- To” Strategies are as follows:
Rest. Primarily for fatigue. I practice a technique called “Pacing” where on better days I am up for 90 minutes and then I set a timer and do a 30 minute undistracted rest break. No phones, laying down in a dark room. This doesn’t take pain away but it definitely helps stretch out the little energy I do have. “Pacing” can be defined differently for everyone so it is best to see what technique works the best for you.
Arnicare topical cream. All natural. I prefer the cream over the gel. I have gone through many tubes since the discovery of this little life saver. It works great for me for areas that flare and nothing else seems to help such as my ankles, wrists, neck, hips and abdomen.
Epsom Salt Baths. When my whole body aches and I don’t know what else to do with myself, I take a long hot Epsom salt baths. Essential Oils and Bubble bath are optional but add to the experience of trying to
manage living with a Chronic Illness. Light a few candles as well. This has been one of top techniques in dealing with Chronic pain.
CBD Oil has been a game changer for me and has replaced the use entirely of having to take ibuprofen. CBD Oil has also been the best strategy in dealing with chronic pain until I was able to find a new doctor and get a proper diagnosis and be under the care of a medical professional to help with pain management. I still take CBD oil, not as regularly.
A tens unit has helped me with bad headaches, neck pain, shoulder and lower back pain. You can purchase one off of Amazon for a very reasonable price. I use the tens unit for unbearable headaches, neck pain, shoulder pain and lower back pain. A foam roller is also a wonderful tool that I received from my physical therapist for theses exact areas to help relief pain. There are some great techniques online, start slow and gentle. I use it primarily to roll and stretch out my back.“
Q: Have you ever seen a therapist to help with your illness experience? If so, how has therapy helped you?
A: “I briefly went to a Pain Psychologist at OHSU from a referral from a Pain Specialist also at OHSU prior to my Vestibular Disorder diagnosis. He taught me deep belly breathing techniques. Once a diagnosis was found for the inner ear damage he felt I no longer needed to be seen. I have not sought out nor have been advised to see a counselor since. I do a lot of journaling, devotional reading, praying, time in nature, keeping a daily gratitude list, garden therapy when I am able. I find all those to be very therapeutic. I have also found that blogging has been a great tool as well to process new information and to try to spread encouragement others .”
Q: What advice would you give someone who recognizes something might be wrong but still hasn’t received a diagnoses or has just received a new diagnosis of chronic illness?
A: “If you suspect something is going on in your body, go with your gut feeling and schedule a doctors appointment. If your doctor does tests and they are normal, keep asking questions, write them down prior to your appointment and take them with you. Be the best self advocate you can possibly be for yourself. If you need extra support bring someone to the appointment with you. Ask if you can be sent out to a Specialist. Keep going back. If your primary is unsupportive seek a new doctor. It is very important to be under the care of a kind and supportive doctor. Do not loose hope. Answers are out there. Knowledge is power.“
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