I Was Not Always A Proud Disabled Business Owner
Questioning the origin of my vocal spasms
#VocalCordDysfunction #Dystonia #Autism #Dysphagia #SensoryIntegration #SensoryProcessingDisorder #MotorDisorders #Dyspraxia #Apraxia #ApraxiaOfSpeech #Undiagnosed I posted a question on the vocal cord dysfunction and dystonia communities earlier tonight, and then did a little research on vocal cord dysfunction in order to see if I could find any answers to a question that has been unanswered or partially answered for decades in my life. About the cause of the painful vocal spasms I've had all my life, and the dysphagia issues that developed in early adulthood, that seemed to be related. An exacerbation, if you will. Both have waxed and waned significantly since.
What I found google suggested two things: 1. Nobody in the medical community really has a clue about vocal spasms, although the field of dystonia has more knowledge than the rest. And 2: Given all my other issues, it is entirely likely these symptoms are not caused by jyst one thing. It could be a number of things! Oh yeah, I forgot to add #Trauma #PTSD #CPTSD and #Asthma to the list of potential factors. Oh, and #childabusesurvivor .
Stress does seem to have played a factor, as does #Fatigue especially as I consider the baseline level of fatigue and stress I lived with for most if my life that I am only now beginning to realize the effects they must've had on me, and how much it all must've inhibited my abilities and ability to grow as a person, and to learn. (Which were hidden due to my high intelligence and academic ability. #Hyperlexia played a factor in that. And the general intolerance of the people in my environment, and the ableist nature of society in general.) And the cost its all had on/to me.
But there's a lot of neurological complexities too, as you can see by the hashtags. It makes me leery of trying yo officially get this sorted out after all. Most medical professionals won't know quite what to make of it all, if they even know the terms! Still, I wonder... I've always thought it was one thing, or mostly one thing, but maybe it isn't. Maybe it is more part of the whole "interesting neurological mess" thing so many autistics find themselves dealing with. (Multiple neurological syndromes that are too complicated to try to explain how they all work, never mind interact, to outsiders)
A Journey to Hell and Back
This is going to be a very long read I’m afraid. Perhaps you can read this when you have to pretend to be busy or when you actually are busy but need a distraction? Either way, buckle up and keep a cookie ready (you’ll know why when you reach the end)!
Birth and Childhood
For as long as I can remember, I have had a brilliant mind and a tired body that just couldn’t keep up. I do not recall being a very humble person, or a patient one either for that matter, which is probably I was born as a premature baby in a government hospital in Madras, India, and survived thanks to its incubator.
I had primary complex as a child, and remember my regular visits to a pediatrician (who called me “vendaikkai” – okra, for how I looked) with my father. Sports or any physical activity made me tired faster than anyone else in my class or friends circle. I remember cursing my father for not letting me go to new year’s eve celebrations with my friends in my neighbourhood while silently thanking him in my head as my feet would kill me from just a few hours after the cultural events that we kids did together.
Teenage and University years
I was also extremely anxious, which was just chalked to being nervous and over-ambitious. I used to throw up or have severe nausea before any major exam or competition, despite the fact that I would go to be the topper in almost everything I tried. There was a joke in my circle that if I didn’t throw up before an exam I wasn’t going to do well. What can I say – this is the stuff vicious cycles are born of.
When I was 19 or 20, I was diagnosed with polycystic ovarian syndrome. College years were not the best to have crazily irregular periods, acne, facial hair and weight gain. Needless to mention, my feet were planted firmly in nerdville, being that girl towards whom boys ran only the morning of every exam.
Let the diagnosis game begin!
When I was 23 and newly married, I was diagnosed with PTSD, months after I had undergone an assault (of which no one, except my then fiance and now husband) knew. Starting your marital life being scared of sex is not great – let me assure you, if you had any doubts on that count (although why would you?).
When I was 24, I started having severe back and knee pain, which was chalked up to bad posture and weight gain. Lose weight, they said, not making it clear how that was supposed to happen when nothing I ever did shifted the needle on the weighing scale except to the right.
When I was 27, a few months after I gave birth to my only son, I was diagnosed with degenerative disc disease and patella femeral syndrome.
When I was 29, after almost five years of living with pain, I was diagnosed with Fibromyalgia syndrome. You would think I must have been devastated. On the contrary, I was relieved. Relieved that all my pain and problems had a name. If I knew what was about to come, I probably wouldn’t have been so relieved. Oh well, those were the days of naivety.
When I was 30, I was diagnosed with gallstones, after a terrible attack.
When I was 31, I was diagnosed with RSI and underwent a surgery to fix it which only made my right hand worse than it originally was. I should have sued that surgeon and considering that suing people was my livelihood, I have no idea why I didn’t!
When I was 32, I was diagnosed with dysphagia caused due to Helicobacteria pylori, followed by severe GERD and stomach ulcers. I couldn’t eat solid food for months but then I lost 17 kilos. Even-Steven?
When I was 33, I was diagnosed with cluster headaches and I had high blood pressure for the first time which was not really treated – either by my primary physician or taken seriously by me.
A near death experience
When I was 34, I nearly died from a hypertensive crisis while on vacation on top of a mountain in the black forest region. I will write a lot more about this separately. I started suffering from debilitating episodes of anxiety and severe panic attacks which put me in the ER. I was diagnosed with severe burnout.
After months of testing and trials, I was diagnosed with asthma, costochondritis, serious hormonal imbalances involving the adrenal glands causing high blood pressure, severe vitamin and mineral deficiencies.
The pain part of my life has been covered. What about the rest?
In between all this, I got a law degree (with honours and gold medals), fell in love and got married, moved to a different country, got a a masters degree in international law cum laude, set up my international law practice and expanded it to have clients from seven countries and a team of lawyers I supervised, gave birth to a wonderful boy and bought my first home with my husband.
Living in denial
For years, my coping mechanisms to deal with my pain varied from fighting it hard to ignoring it altogether. Every time a new illness or symptom cropped up, I would cry for a while, start treatment for it and keep going on after that. I would change my diet, try exercising, but eventually lapse into a pattern of over-working, little to no exercising, eating whatever I could find my hands on in between my busy schedule and sleeping whenever I could. Given a choice between playing with my son or exercising, I always chose the former as I had little time with him to begin with.
I firmly believed that I could everything I wanted in life irrespective of my pain or health issues, as long as I put my mind, heart and soul to it. Unfortunately, the mind, heart and soul can only exist and function as long as there was a body to hold them safely. As my grandmother would say, you cannot make a fresco without a wall of some kind. There is only so much a body can take, after all.
Time for change
I started making changes to my life very slowly. I stopped working when I was diagnosed with burnout. I started undergoing regular therapy and physiotherapy sessions. I started doing yoga and going for regular walks. I started singing, praying and trying out art again. I started spending more time with my family. I truly enjoyed the time I spent with my son – reading, painting, baking, writing, walking – and continue to do so with great happiness.
I started paying attention to my body a bit more. I learned to recognise symptoms, triggers and means to stop them in their tracks. I learned to differentiate between an actual physical emergency and a panic or anxiety attack. I practiced my relaxation exercises which come in handy during an anxiety or panic attack. I started advocating for my health and thankfully found an amazing doctor who trusted my instincts and adapted my treatment every time something changes. I dropped from three blood pressure pills a day to one. I dropped from 4 inhalations a day to 1 or as needed. I have lost 7 kilos.
I still suffer a lot though. I still have panic attacks. My food intolerance is beyond messed up and the list of what I can eat is very, very small. I don’t always sleep well and sometimes fear that my insomnia will return any day. There are still days when I yearn to wake up one morning and feel completely refreshed. I sincerely cannot remember the last time that happened. I don’t know what exactly to do with my life if I cannot practice law the only way I know to.
Nevertheless, I have learnt a lot along the way. I have learnt the importance of a good and balanced diet, proper supplements, exercise, appropriate treatments and above all, how to advocate for your health when the system is not geared to support you or your instincts.
So, why my story now?
The only thing that is constant in all this is my pain. It is a true and intrinsic part of who I am. I kept reading about how I should not let my pain define me and I should learn to overcome my pain and be happy. The truth is far from that, as far as I have experienced.
Imagine having the flu, as well as the muscular pain and inflammation associated with your period, a day after giving birth. That is how I feel every single day of my life. I know that men cannot understand this but I’m sorry – I have no other way to describe Fibromyalgia! It is hard not identify with something that is so omniscient in one’s life. There is just no way you can be happy when you feel like you have gone 20 rounds with Muhammad Ali even though you have just now woken up after 8 hours of sleep! It doesn’t mean you have to be depressed all the time and do nothing either.
The truth lies somewhere in between. I cannot forget my pain, nor can I overcome it as there is no known cure for Fibromyalgia yet. I can, however, accept it. I can assess what changes are needed in my life because of my pain and adapt accordingly.
It does not matter what I do with my pain or even despite it, but what matters is what I do because of it. If I can support and help others who suffer from chronic pain, by sharing with them the wealth of knowledge I have accumulated over so many trials and tribulations, or even just by letting them know that they are not alone, then that would be a great thing which arises because of my pain. Don’t get me wrong – I’d still chose a life without bloody pain any day – but since I cannot make that choice, I might as well do something good with it.
That is the reason for for sharing my story now. That, and the fact that it might be better to scream into a void in the internet (where Janet from the Good Place resides, probably) than in my own head.
To my fellow “spooners”, I do not want to be a quiet sufferer, nor do I want to be a beacon of positivity. I simply want to tell you that it is alright to acknowledge a painful identity.
Hello!! I'm new here, I found this site while on pinterest love the quotes they really help with moments of feeling alone, I suffer from Fibromyalgia, Panic, PTSD and an over thinker. It has been a really difficult year for me. I lost my furbaby in December 2weeks before Christmas she passed away while I was holding her. She was my light, my anchor. I miss her every day, i still see her and hear her bark like she's right their waiting for me to play. Since that day I feel lost, empty, like theres a bad luck cloud following me. Between night terrors, restless legs, tremors,headaches, heart palpitations and dysphagia my life has been upside down.. I push forward for my family with my father being sick and my mothers spinal surgery cancelled thanks to covid. I know I must keep smiling, it is my specialty and helps with the panic to know I can help someone see the beauty in the darkness and simplicity in the chaos. I look forward to being apart of this community. Sorry so long winded
Today I went under anesthesia to get my IUD out, pap smear, and Lupron shot. I’m pissed at how they handled the timing.😡 Check-in was at 12:30pm. I wasn’t told I couldn’t eat beforehand and had a small breakfast at 8:45am. They said they needed to wait until 3pm, in case I still had food in my gut that I might aspirate on. So, I waited. 3pm rolls around and they try to put an IV in. Didn’t get it in until 4pm. At 5pm, I ask the nurse how long it’ll be. She tells me they switched 2 people into the spot I should have had, so I have to wait until they’re finished. I finally decide to go to the bathroom, and when I come out, they’re ready for me. It was roughly 5:45pm. The procedure went ok. She took a biopsy of something (and cauterized the area) that seemed suspicious. That might take a week to get the results back. I didn’t like that the nurses in the post-op area tried to help me with putting my contacts back in. Also, putting one of my shoes on when I clearly didn’t have a problem with it. The handle of my cane got damaged a bit, too. My body feels angry in other ways. Hopefully, that bodily anger and irritated feeling will go away soon. They gave me a soothing anti-nausea pack of things like crackers and ginger chews. I don’t have issues with nausea right now. Heck, I take 2 anti-nausea meds 3 times a day normally. I finally got to eat real food after. We went to It’s Greek to Me, and I got a gyro and fries. Haven’t had a gyro in a long time, and that made me feel a little better. Didn’t get home until 9pm. Didn’t expect to spend the whole day there.
Tomorrow will be different. I have the esophagram, and check-in is at 8:30am. It’s also in Tacoma. They actually said not to eat anything beforehand. So, I’m not going to. I’ll just get up really early (Tacoma’s about an hour from home), get dressed, and then go. I’m not even having my breakfast pills. It should be an easier ‘procedure’, too. I just have to drink something and they take some sort of imaging of it. #procedure #IUD #anesthesia #Health #Cancer #Lupron #papsmear #esophagram #Dysphagia #angry
Pandemic from a Chronic Viewpoint
“EVERYTHING WE DO BEFORE A PANDEMIC WILL SEEM ALARMIST. EVERYTHING WE DO AFTER WILL SEEM INADEQUATE” – Michael Leavitt
As of today (Wednesday, March 18, 2020) something unprecedented in our history has occurred: many countries have been asked by their governments to remain at home. We are all at war, right from our own living rooms. It’s new, unfamiliar territory and we’re all learning about it as we go, including how it spreads, which is a concept that is constantly updated as we learn more about it.
It’s in our news stories, our social media feeds, and on our minds- this new reality that has leveled the playing field, globally. I am well-informed about the effects of the virus, and the percentages involved in this viral storm, since I’m familiar with medical research as a part of my own conditions. It can all seem daunting, yet I hold on to hope that most people in the U.S. will make it through this, virtually unscathed, physically. However, I’d like to share my personal viewpoint as a chronically ill member of society who lives with a rare and incurable disease.
I’d like to begin by stating I am not afraid of the corona virus. I’ve learned its origin, how it spreads, and how we are all susceptible. I don’t believe in allowing fear to control me, because this virus has a will of its own that I cannot change. I do believe in the importance of staying informed through reputable sources and being mindful of our civic duty to follow guidelines. They are in place not only for our own benefit, but for the benefit of all around us.
I will take this teachable moment to share what I’ve learned about this ordeal that does have me worried, on a personal level. I’ve been a part of the medical community as a chronically ill patient for the last 14 years. I have a unique experience, compared to the “normal” community of folks who visit doctors and hospitals for “regular” medical necessities i.e. annual exams, cold and flu checks, and having babies or knee replacements.. you get the idea. I know many of my doctors, nurses and pharmacists by name, as does a majority of the chronically ill folks I keep up with in international online groups. Because of this chronic lifestyle, as I read about the experiences of other countries, Italy, China, Switzerland to name a few, I can place myself in the heart of the battle. I visualize the familiar faces of the nurses who care for me at the hospital in Council Bluffs every week, not to mention my own medical staff family members who work on the front lines. I can imagine exactly how the hallways and rooms that I wander through will change drastically, how clinical staff will be exhausted and possibly become ill themselves as they are doing their utmost best to save our lives. They will have the crushing responsibility of choosing between savable patients and those who will be turned away. You see, the problem is not in the virus itself, nor the fact that it might not effect most people terribly. For us, the issue lies in the susceptibility we have in becoming markedly ill with our very own illnesses, and not being able to receive the care we will so desperately need because there is no room for us.
How many people are affected by chronic diseases? Generally incurable and ongoing, chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of this country- projected to grow to an estimated 157 million, with 81 million having multiple conditions. Not to mention, for normal folks out there, leading causes of death in the U.S. are heart disease and cancer. When hospitals are brimming with corona virus cases, how can people who require treatments or whose illness flares going to get the treatment they need to stay alive and well? I’ve already imagined life without weekly IV, and I am facing more physical issues than I care to list, with the very worst case scenario being a stroke. I live with genetically smaller veins in my brain (due to my chronic illnesses), which is most likely what prompted my first stroke. I was lucky to receive treatment in the ER in time, and though I continue to have short term memory and dysphagia issues, they are mild in comparison to not being able to speak at all, nor write, as I was that night. The possibility that I won’t be able to keep up with my treatments, and that the ER will not have an area to treat a stroke is more disheartening to me than working through a virus, no matter the outcome. This is not a far-fetched idea- it is the current situation in Italy.
I urge every U.S. citizen not to mire in the fear and helplessness this situation can bring, for fear of the unknown is common. Instead, be aware of the impact our daily lives can have on others. Arm yourself with knowledge and common sense. Take part in ‘flattening the curve’. We can get through this together, with less impact than other countries are facing, if we learn from them and our healthcare professionals immediately. In spite of the inevitable future, I believe my life is just as valuable as the next person’s. Let’s be proactive collectively, bearing that theory in mind. I have been encouraged by the groups of people coming together for the good of others and their families in this difficult time. Here are just a few simple guidelines to live by for the foreseeable future, as well as:
• BE POSITIVE and maintain kindness
• HAVE SOME FAITH – in whatever spiritual guidance you seek, and in each other.
• WASH YOUR HANDS, often and well.
• DON’T TOUCH anything in the store and set it back down for someone else to pick up.
• STAY HOME (only you know how effectively you can maintain this guideline) OR PRACTICE SOCIAL DISTANCING. Be mindful of the people and establishments you come into contact with. If they become infected and you are asymptomatic, stay home!
• DON’T FLY- everything is closed anyway.
• LIVE LIKE YOU HAVE A TRANSMITTABLE VIRUS (even if you don’t). We continue to learn more about this virus every single day. It’s brand new, and formidable, and there is much to learn as it mutates and changes. Please do not assume to know how it will effect you or others.
• DON’T SPREAD MISINFORMATION. If it seems highly unusual, it probably is. Please fact check before reposting! Spoiler alert: No BATS were eaten to kick start this pandemic.
Be well, know you are loved, and see you on the flip side.. -ah