Beauty & Chronic Illness Blogger Ashley B., gives readers advice and tips on how to remain chronically fabulous while living with a life long disease. Ashley was diagnosed with a rare neuromuscular autoimmune disease called Myasthenia Gravis in 2017. Her goal is to raise awareness, educate, and provide support to other 20 something year olds with a life long disease.
“Why are you still single?” “You’re so pretty. I’m surprised a guy hasn’t cuffed you yet.” “When was your last relationship?” I get these questions often, but honestly they’re just code for: “What’s wrong with you?” One of the most complicated and heart wrenching things that I deal with besides actually living with an incurable disease, is dating with it. No one is jumping at the thought of being with someone who will be sick forever. And I get that. And before you think to yourself "Well the right one will understand your illness". I also get that, but in the meantime... I just try to save myself the heartache and tread lightly. Common problems I face while dating: 1. I hate making plans, because my health is so unpredictable We can set a date an entire week out and the night of, I’ll feel like shit. 2. It’s hard for me to drive or be outside of my home when it’s dark outside Myasthenia Gravis makes me super sensitive to light and affects my vision tremendously. When the sun goes down I want to curl up in my bed and sleep. 3. No one knows WTF Myasthenia Gravis is Which is completely understandable. I hate when people pursuing any kind of relationship with me don’t even take the time out to Google my disease! 4. Limitations & Patience I may appear completely fine, “normal” but I have several physical limitations because of my chronic illness. Learning about them and accepting them is huge. Also being patient with me. 5. Side effects of my meds Insomnia, nausea, diarrhea, mood swings, pain, etc...This list could go on and on forever. Nothing is sexy about it and whoever I’m dating will be present for them. My anxiety/depression are either triggered or made worse by some of my medications. 6. Emotions make me sick If I allow a person in and it goes south...I take it extremely hard. When I feel like shit emotionally, it makes me sick. All of my symptoms become worse. I’m so hard on myself and often times I blame myself. 7. You love harder when you’re sick Most of the time I am alone or with family. It can get quite lonely. My social life is somewhat restricted because of my illness. So it’s safe to say when I like someone, I really really like them. This can be VERY dangerous. I've been through a lot in my 23 years of life and I know how it feels to not want live because you're in so much pain. I also know that life is entirely too short. I have to remind myself when I'm crushing on someone: Chill Out Ash, SLOW DOWN. Because I may come off as "intense, deep, too romantic" (Eye roll). In truth I'm just happy I've found someone that isn't scared of me or my illness. 8. I feel like a burden Eventually doctor’s visits, hospital trips, and Netflix dates become old. I start to feel like a burden. 9. Hospitals I spend a lot of time here. If the person I’m talking to gets uneasy being in one (sleeping, visiting, whatever) it’s a NO for me. These are just a few of the problems I encounter while dating while chronically ill. I’m curious to know if any of you (Spoonies or not) suffer from the same issues. My advice to guys/girls wanting to date someone with a chronic illness: Be cautious and attentive with their hearts. Don’t pursue them if you have no intentions of being anything more. Accept their limitations and never make them feel like they’re not good enough. Be supportive, loving, patient, and kind. #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist
In the year of 2018 I gave people entirely too much power. I allowed people to make me feel less than, undeserving, ugly, sick, fat, unattractive, unwanted… I gave them permission and allowed them to make me feel inferior; like I was not worthy of being loved. I settled for remnants of affection. I allowed others to influence the way I viewed myself because of their inability to understand and see past my physical shortcomings. I settled for situationships; circumstances that hurt more than aided in my recovery. I didn’t advocate for Ash. I’d like to say to all of those people… You can Get the Fuck Out And Hello 2019 #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist
This blog post is for all of my Type A personality, Busy-bee, overachievers that live with a chronic illness. The power of saying NO when you’re ill makes all the difference. You do not have all the Spoons Sway! The biggest lesson of 2018 was: It’s okay to tell these hoes no! You is smart, You is kind, and You is important BUT you do not function on the same level as an abled-bodied individual. This may be a tough pill to swallow, but it’s the truth. You can still do all of the things you love, but you must pace yourself. The body requires twice as much rest Please remember that your body works around the clock and overtime because it’s busy fighting itself. Rest is essential. “I use to be able to do this and that and blah blah blah before I was diagnosed”. You can still be that ambitious bad ass you once were, but if you over do it you will feel terrible and possibly land yourself in someone’s hospital. Sometimes you will be forced to say NO to an invitation, party, dinner, etc… only to find yourself at home sitting in your bed. And that’s completely fine. Don’t beat yourself up about it Do not allow other people who are not in your predicament to make you feel “lame” or “lazy” Do not feel guilty for flaking/ cancelling plans. Real friends get it and if they don’t they can GTFO Don’t overexert, bend over backwards, or any of that to please others. Your number 1 priority is YOU and your health Don’t feel the need to explain yourself! No justification necessary If you are struggling to keep the same energy within this post, I encourage you to listen to Mariah Carey’s song “A No No” for an extra boost of encouragement. No one knows how hard it is to be you and live in your body. Always keep a NO handy and save your Spoons love. #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist
When I got diagnosed with Myasthenia Gravis in June of 2017, my doctors had one goal. Treatment goal: Be aggressive in treating the symptoms of the disease ASAP My symptoms were so bad that I would choke on my own spit. My typical day would begin around 7 am. I’d wake up in the mornings for school and look perfectly fine. By the time I’d be in my 4 pm class my eyelids would be low and I couldn’t take notes. My hands wouldn’t generate enough strength to grip a pencil. I’m just trying to paint a picture for you all... I looked and felt like shit. The neurologist prescribed me 60 mg of steroids a day and 60 mg four times a day of Mestinon. Results: I gained 40 lbs in a matter of 4 months. Couldn’t fit any of my clothes and I stopped leaving the house Prednisoneis the worst. It makes you want to eat everything in sight. I was depressed and grieving the loss of my formerly healthy self and body so I ate. I ate my feelings. I ate food for comfort. I ate to help with the pain. I just ate everything. People began asking questions when the weight began to show on my face. I didn’t share my diagnosis with anyone initially; only my mom, sister, and a handful of close friends knew. I’ll never forget. I was Netflix & “Chilling” with this guy. We’d slept together off and on for at least a year and a half. He looked at me one night and asked if I’d gained weight. Then proceeded to poke my belly and ask if I was pregnant. I felt so ugly. I realized I needed help. I visited the counseling & testing center at my university and filled out the paperwork work to start sessions. They have you talk to a counselor once you were done with the application. The first question the lady asked me when we got situated in her office was: “What brings you here today?” Me: “I’m in my senior year of school and I just found out that I have a rare disease that they don’t have a cure for. I’m in so much pain and tired all of the time. I look fat, I eat entirely too much, and I’ll probably have to have open chest surgery in the next month to remove my thymus. Oh and I basically major in my disease. I want to just quit." Side note: In RT school you learn all about how to mechanically ventilate patients with different types of disease states. Neuromuscular patients were my least favorite to learn about. Imagine learning about how bad a disease that you have can get everyday? It’s scary. I cried right there in her office. The wait list to see a therapist was typically 3 months because of the high demand on campus, but I had an appointment set for 2 weeks out. My counselor was my saving grace. She prepared me mentally & emotionally for the pain and fight I’d have to face with MG. Equipped me with some tools and exercises that help when I’m in my depressive mood or having a panic attack. My condition only gets worse when I stress or have high levels of anxiety, it’s especially important for me to keep my mental health in check. MG doesn’t allow me to have control of MY body, it’s so unpredictable and most times i don’t know Wtf is going on. Sometimes I just need someone to talk to and tell me “Nah you’re not crazy to feel that way”. Taking care of your mental health is so important when you do or don’t have a chronic illness. How you feel on the inside has a lot to do with how you look on the outside. After months of steroids Body image and my way of thinking is the biggest thing I struggled with. I swear before MG I thought I was an Instagram model (still do). I love taking photos and I love my body.The most amazing Therapy I’ve received besides the IVIG (liquid gold) has been being able to talk to my counselor. Don’t be afraid to seek out help. Talk to someone and let it out, you’ll find it’s very therapeutic. Try finding like minded individuals who are coping with the same issues as you. For me that person was and still is my mentor/ Fairy-God Mother/ Soror/ MG twin. I was blessed enough to find another person who has MG and I get all of the perks of a Sister. Here's a picture of us: Love you Soror Marcia! Ash Out
Myasthenia Gravis Pronounced: My-as-theen-ee-a grav-us This is the name of the chronic illness that I have. To make things easier for everyone let’s just say MG. MG is a rare neuromuscular autoimmune disease that affects the voluntary muscles of the entire body. Voluntary muscles are the ones that are under your conscious control. You tell your legs to move and they usually follow command right? They just move without you putting much thought into it. Well with MG the message from the brain that says “move” isn’t able to be delivered to that leg/muscle. The Science Breakdown: In order for the muscle to contract; enough of the receptor sites at the neuromuscular junction of a muscle have to be activated. Individuals with MG’s bodies create antibodies that block and destroy those receptors. Ultimately there aren’t enough receptor sites available to receive the message and the result is a crappy signal which equals weakness. Antibodies are suppose to fight and kill the bad things that get into our bodies like bacteria and viruses. People with MG’s antibodies didn’t get the memo and instead they attack the body. Simple Version: My body is attacking itself. Now the name should make sense. Myasthenia Gravis literally means grave muscle weakness. Symptoms: Droopy eyelids (also called ptosis) Blurry or double vision General weakness Difficulty swallowing and chewing Slurred speech Difficulty breathing Some people may or may not present with some of these symptoms. This is the unique quality of MG. Myasthenics are often called Snowflake warriors. You’ll never see two of the same snowflakes; every snowflake has a different shape,size, & uniqueness. The same logic can be applied to Myasthenics. My Experience: I’ve had all of the symptoms listed. When I was undiagnosed you’d probably look at me and think I’d had a stroke. My eyes would droop & I remember not being able to make a smile or laugh. The scariest part of it all was having trouble chewing & swallowing my food. If anyone knows me they know my love for food. That was the one symptom I couldn’t ignore & landed me in my primary care physician’s office. How do you get MG? Don’t worry guys you can’t catch MG; it’s not contagious and I did not inherit it from my mom or dad. Surprisingly no one in my family has ever heard of or been diagnosed with it. The exact cause of the disease is unknown, but it affects both men and women. Specifically women in their 20’s-30’s and older men 60 and up. My Experience I was diagnosed when I was 22 years old. My senior year of college to be exact. People still tell me all the time “you’re too young to be sick”, well I’ll make sure to tell my Myasthenia. How do you cure MG? Unfortunately, there is no cure for MG. Doctors aim to treat the symptoms of Myasthenia and improve the quality of life. All of the medications & therapy prescribed aim to assist with muscle strength and suppress the overactive immune system. Bad thing about these medications: Side effects & it lowers your ability to fight off actual infections (common cold, respiratory infections) My experience: So I am super susceptible to infections, colds, flus, viruses, etc… but I work in a Children’s hospital. Kids practically breed & pass around these respiratory infections all year round. I combat these germs with some simple tips you can check out here: https://www.ashleysanatomy.com/blog/a-spoonies-guide-to-surviving-respiratory-season #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist
Wash your damn hands! Don’t touch your eyes and face Mask up! Lysol is your friend Vitamin C Avoid contact with people who have the sickies Stay home Limit your alcohol intake Water! Sleep Take cold/flu & preventative medications as soon as you feel symptoms Communicate with your doctor & track your symptoms #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist
Spoonies refer to a group of individuals that have a chronic illness (i.e. Autoimmune Disease). This term comes from Christine Miserandino's essay called The Spoon Theory. Check out the her site and essay at the link below: These spoons are representative of the "energy" required to complete simple day to day activities. I use the Spoon Theory to explain my capacity and energy level to my close friends, family, etc... Instead of me having to go into "My feet are swollen and it hurts to move". I simply say "I only have 1.5 spoons left Mom" and she'll be like "Say Less". While the average person may have a countless supply of spoons, I may have around a good 12 at my disposal. You can cut that down to 6 spoons if I'm stressed, anxious, upset, too hot/cold, sick, tired, the list goes on and on. I wanted you all to understand the Spoon Theory better so I made this diagram Pink Spoons represent the energy I've exerted completing an activity. Yellow Spoons represent some of the energy I've gained back. Sleeping, eating, taking my medications, or sitting down to catch my breath helps to get my spoons back up. Waking up is hard to do. I'm usually sore/aching -2 Spoons already Driving to work and the walk from my car to the department is like a workout. I'm normally out of breath & exhausted -1 Spoon First rounds are the hardest & longest for me -3 Spoons Surprise, Surprise! It's almost 9 am and I haven't eaten or taken my 8 am meds. +1 Spoon 2nd Rounds take another -3 Spoons from me, but I regain +2 Spoons at lunch & during my down time. 3rd Rounds aren't that bad (-2 Spoons) but after I grab a snack (+1 Spoon) Last rounds, walking to my car, fighting traffic, dinner, and bedtime KICK MY ASS -7 Spoons I end my day with a whopping NEGATIVE3 SPOONS! The price I pay when I over-do it the day before is bed rest the next 2 days to fully regain my 12 spoons. Which brings me to another fun thing that I deal with... Chronic Fatigue. Chronic Fatigue - A debilitating disorder that is characterized by extreme fatigue. Signs and symptoms of chronic fatigue include: Headaches Sore/aching muscles Impaired decision making ability Extreme exhaustion lasting longer than 24 hours after physical activity Chronic fatigue causes you to feel so tired that you struggle to complete normal tasks. It makes it especially difficult to maintain a job and extra curricular activities. Many people that suffer from a chronic illness deal with chronic fatigue because our bodies are working 100 times harder. Protecting our bodies from our own immune systems. My body is working overtime 24/7 and the result is chronic fatigue. I'm always tired. No matter how much sleep I get, I could always use more. After my 12 hour shifts I am a special kind of tired and it physically hurts to move. Recovery time for me after working is around 2 days. Having a chronic illness has taught me what is/isn't worth my time or energy. My spoons are precious! Yours are too and you should use them wisely. PET PEEVE: When I tell someone I'm tired and they reply: "Yeah me too, I worked a 9-5 today". We are not experiencing the same level of tired. In every task I have to complete it requires twice, hell maybe even triple the amount of spoons compared to you. I wish I could remember how it felt to be "normal tired". Normal tired meaning the tired I felt before the onset of my disease. Please be mindful when you're complaining. -ASH (s.k.a Ravenous) #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #TheSpoonTheory #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist
I’ve wanted to start this blog for a while now. At first I didn’t feel comfortable being so open. Naturally, I am a very private person and the thought of sharing my truths for others to comment on makes me uneasy….still does BUT shortly after being diagnosed I quickly realized that people are ignorant aF. Ignorance is not knowing what you don’t know so I figured, “Why not educate people instead Ash”. The average person who didn’t major in science or some health-related field won’t know about this stuff. Unless they’ve had a chronically ill family member or friend; this isn’t something that crosses the average person’s mind. I am dealing with much more than most people are able to even comprehend and that’s okay. I promise throughout this journey to remain: Honest Transparent Patient I’m not looking for anyone’s sympathy, “Hope you feel better”, or any of that. I’m here to give people an insight… rather a glimpse into how it is living with an autoimmune disease. The good/bad/ugly. I’m here for the countless of other Spoonies that are probably lying in bed searching for answers or someone who gets it. I’m here for the newly diagnosed, the single twenty-something’s, chronically fatigued, chronically stressed, etc... I'm praying that my experiences and tips can help someone who's going through hell. I hope that this blog helps YOU because I’m finding this cathartic already. Welcome to Ashley’s Anatomy -Ash Terms 2 Know: Spoonies- Someone living with a chronic illness. #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist
I park in the handicapped parking spots now.
All of the medications I take, mood changes, temperature changes (hot or cold extremes), etc...trigger my MG. This summer has been a hot one. Walking from my car to the front door of a store is unnecessary torture I refuse to inflict on myself. I park in the handicap spots at the very front. To the nosey old lady who mean mugged me at the Family Dollar:
“You don’t know my life! Give me all the nasty looks your heart desires, BUT I’m still parking here ma'am” My body does not operate at 100%, hell I’m a strong 60% on a good day. I am disabled. I shouldn’t get dirty looks or weird stares when I whip my car into that blue spot. Either I park in this spot OR I can faint in this parking lot? You choose... -ASH #MyastheniaGravis #ChronicIllness #InvisibleIllness #ButYouDontLookSick #AshleysAnatomy #SpooniesExplained #ChronicFatigue #ChronicIllnessBlog #AutoimmuneDisease #RespiratoryTherapist #RANTS