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Hi, my name is Myrtje. I'm undiagnosed and think i have ...
#LymeDisease #Encephalitis #pans_pandas
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Regeneration
One of my health challenges is myalgic encephalitis (chronic fatigue). With this condition if you overextend, it causes a severe flare up of symptoms sometimes for days afterwards. I overextended due to preparation for Thanksgiving and birthday party for my adult disabled son. Yesterday I could barely move and had extreme pain in the whole body. I went to bed feeling very discouraged. But this morning I was thinking about the beauty I saw on my walk yesterday and I realized like the Earth I can regenerate. I will do that today and not be defeated.
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A diagnosis, sort of & serious confusion
#CrohnsDisease Hi so just like the title says I kind of have a diagnosis though it's not complete. One of my panels came back. The paraneoplastic one. It was negative for that. Celiac's was also normal, however vitamin B12 was shockingly low for some strange reason. I eat plenty of meat, eggs, dairy etc. I don't have Celiac's disease so the only other thing that can be a cause for that is Crohn's disease. Now I'm just puzzled because I'm having urinary problems like dark urine, clear urine etc without a reason as to why. I'm starting to wonder if my body is just shutting down. I've nearly passed out a few months ago have had ammonia smelling urine & sudsy urine. I even had a lethargy episode. The encephalitis panel & IEM panels still haven't come back. (Where is taking so them so long?)
Strangely, I have had episodes of upper airway infections in the past as well. I've done some digging on inborn errors of cobalamin & all I'll say is "It's not pretty."
With that aside, I may pursue legal action against my prior provider for intentionally hiding results from me without my knowledge. The provider also didn't want to vitamin B testing because he didn't feel like I needed it. Unbelievable! I'm NOT happy about it! His staff also refused my new providers appeal for getting records over to them. I gave them 8 MONTHS with no results! So, I'm basically filing a few lawsuits against them. Hopefully that place gets either shut down or somebody loses a medical license & fined heavily for what they have done is a big no no in the eyes of Hipaa! They have messed with the wrong guy!
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Appointments coming
Good morning everyone. How are you all doing today? I wanted to share that I'm seeing 3 doctors within a 3 week period. An ent in 2 days, a neurologist in a week & a spine doctor in 18 days. I'm becoming a little anxious about each of these appointments for a few good reasons. There's lots of pressure on me to say the right things & explain to them that my problem is real & is affecting my quality of life. Problem is the issue that is causing me digestive issues, swallowing issues/clicking throat, grip issues, posture abnormalities, gait disturbance/ wide based gait, tinnitus, tmj etc. I have proof of the digestive symptoms yes ew, but they may be critical in figuring out if I have an infection or not. The neurologist will need to figure out on top of all that if radiological findings are just porencephaly or something more sinister.
My guess for the first set of problems is an encephalitis of some kind. I've read about how infections can be dormant then occur suddenly after stress, excercise etc. Before we moved houses I got a pinched nerve in my neck that with correction unleashed its wrath on my poor body. I'm hoping the neurologist can piece together whats going on there. Bloodwork, urine etc have comeback normal so I don't know how we are going to detect something that is getting harder to find? The spine doctor will need to figure out why I have a posture lean. The ent will need to figure out if my swollen lymph node & nodule are benign or cancerous. There's alot we need to figure out & its kinda overwhelming. I hope all will be revealed soon. I'll keep you guys & gals updated as I learn more. Have a great day.
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MY JOURNEY TO FINDING MY PURPOSE IN LIFE
Life was grand as a toddler, going on weekend trips with my parents, playing with my friends, and listening to grandma as she shared one inspiring story after another about the good old days. What more could a child ask for than the love and comfort of her family?
Surprising life quickly took a turn for the worst, and that pathway I was destined to journey became rocky as traumatic obstacles crossed my life path and took me on a different journey. A journey, one no child should have to experience.
THE BEGINNING
At age five, I contracted a sore throat and an ear infection. My mother brought me to the doctor’s that evening, and the pediatrician put me on penicillin and told my mother to have me rest. Of course, no one thought much of it at the time.
I rested in bed and was on penicillin for about ten days. On the tenth night, when she put me to bed, my lips were more red than usual. The following day at about 8:00 A.M., my mother woke up because she heard unusual noises coming from my room that sounded like I was choking on my saliva. She entered my bedroom to find me in my bed, turning blue and having a grand mal seizure. This was the first time I ever experienced a #seizure.
During the seizure, I fell to the floor, my eyes rolled to the left, and my whole body began to shake. My teeth began to chatter, and I started to foam at the mouth and choke on my saliva. My skin color began to turn bluish because of the lack of oxygen I was enduring.
My mother ran to the phone to call the ambulance and had me rushed to the hospital. They brought me to the emergency room and hurried me to the isolation ward. They had no idea if any type of serious or contagious illness brought on the seizure.
They administered many tests to try to diagnose the cause of the grand mal seizure. The doctors finally concluded that the grand mal seizure came from a virus. This was not an ordinary virus. It was a virus known as encephalitis.
The doctors had told my parents that the bacteria from the ear infection had traveled to my brain and that the virus was still in my brain. They were told that the viral encephalitis had to leave my brain naturally on its own. I was in an induced coma for four days. After the 2nd day, my parents were told that if I survived, I would probably have severe brain damage or I could become paralyzed and paraplegic.
My parents were devastated, but they never gave up hope. On the fourth day, while I was in a coma, my father lay by my bedside and began praying to a saint in Greece. As he prayed he was visualizing the statue in front of his old church. In Greece, water would roll down this saint’s eyes. As my father raised his head and opened his eyes, he looked directly at me to find a teardrop rolling down my face. Immediately after I woke up. They tested me right away. I had no brain damage, but the infection had traveled to my brain and caused scar tissue damage, which left me with epilepsy. For years, I endured endless seizures.
My seizures finally became under control after years of tests, trial groups, and trying every antiseizure medication known to man. My epileptologist gave me permission to drive a car, feeling that my safety was no longer in jeopardy or likely to endanger someone’s life while driving. I was so excited.
At eighteen, I was issued a license that right of passage so important for a young person striving for independence and autonomy. Since I have epilepsy, I was even more excited to get my license since I always felt different from the other kids and that I had something to prove. Now, the gap was closing and I was just like all the other teenagers, one of the gangs, the cool girl in school with a license.
Picking my friends up and driving to the mall quickly became a ritual. We shopped until we dropped and enjoyed every precious moment. We helped each other pick clothes, buying like crazy until our wallets were empty. The morning after a shopping spree you would find us at each other’s house, helping each other get into the new pants that we purposely bought two sizes smaller.
One of us would get on the bed and the other two would help pull up the pants. I can still hear Marie yelling at me to stop breathing and hold in my stomach!
No new purchase was sacred; we swapped our new clothes and could make three new outfits look like ten. As our closets grew, so did our friendships. We bonded, shopping being the experience that brought us closer. No matter how different we each were in personality, we all had a love for shopping in common.
At nineteen, life changed, as you would expect, it should for a young woman about to become an adult. Only my change wasn’t typical.
While I was driving with my boyfriend (who is now my husband) on a winding, country road in New Jersey, I suddenly went into a seizure. My muscles tightened, my arms curved to the left and my foot went all the way down on the gas pedal.
Our future together flashed before us as the car headed straight toward a telephone pole. Fighting me for the wheel was worse than fighting a boxer or wrestler. I had no control and while in the throes of the seizure, I had the strength of a couple of bouncers.
Finally, my boyfriend got control over the car, steering it safely away from the pole and bringing it to a stop.
By then my seizure had passed and a new era in my life began. An angel was watching over us and spared our lives that day, but my license was revoked and my days at the mall became fewer and more difficult to arrange.
I never expected that not being able to drive whenever I desired would have such an impact on my life, but it did. I became a prisoner in my own home, no longer able to hop into the car and go to the mall, to Dunkin’ Donuts for a cup of coffee, or Blockbusters for a video. I was at the mercy of other people’s schedules.
GRIEVING THE LOSS OF FREEDOM
Not one to ask for people’s help, my isolation became chronic. I felt very alone. I was a strong, independent person and I wanted to take care of myself. I wanted to be a successful woman working in New York, shopping her heart out after work then going to the bar to have enjoyed an evening martini with friends. But that idea wasn’t realistic; my dreams didn’t seem to have a chance.
My confidence was shaken, my self-esteem at an all-time low. How was I going to be a success? I had epilepsy. Where was my life going? What was my purpose? I was depressed, hiding from the world, and feeling hopeless inside. Afraid to tell others how I felt, I was trapped.
Read Part 2 - EPILEPSY NOT GOING TO STOP ME
#epilepsy #epilepsyawareness #epilepsywarrior #Seizures #epilepsyfighter #epilepsysucks #Autism #CerebralPalsy #epilepsysupport #epilepsystrong #epilepsyadvocate #ChronicIllness #epileptic #Seizure #endepilepsy #SeizuresSuck #InvisibleIllness #epilepsylife #MentalHealth #repost #cureepilepsy #Anxiety #Disability #seizureawareness #Love #SeizureDisorder #epilepsyeducation #epilepsia #disabilityawareness #ADHD #ADHD
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Processing Strong Emotions After Brain Injury
It’s pretty hard at times to see others move on with their lives. It’s pretty hard at times to feel like you are losing touch with everyone else’s reality. It’s pretty hard to deal with limitations that others don’t have to continuously factor in. Finally, it’s pretty hard to feel as though you’re being left behind. I believe that it‘s not intentional, but saying that all of the above isn’t true – to any varying degree – would also be a mistake.
I’ve come to learn that life doesn’t stand still when encephalitis and brain injury crossed my path. It can sting for sure to see others move on, but if you keep shifting your focus back onto what’s really important, magic can occur in your world too.
How has chronic illness affected me?
I have rummaged a fair bit about all this over the past few years. Tears have flown time and time again and to be honest, they can still flow at times. However, I’ve sort of decided to process all that anger, sadness and frustration in a more positive way. I truly feared that the way I had been handling this aspect of my life could keep dragging my mental health down and this could no longer be an option. I’ve come too far in so many aspects of my recovery to let this be my own demise.
The question was how do I change my ways?
Well I believe that I am allowed to feel what I feel at any particular point in time…I think that sweeping emotions under the carpet wouldn’t be the way to go either. However, I believed that there was room for improvement when it came to seeing my emotions take over and lingering for a prolonged period of time. It came down to me realising that it’s not about what others may or may not have done as I have no control over their decisions. It’s about making conscious decisions to invest time and energy in what works for me and my own priorities in order to help me realise my short, medium and long term goals.
I’ve spent a fair amount of time figuring out what those goals might be over the past few years and I simply cannot afford letting my emotions cloud my judgment to such an extent anymore.
Strategies to help manage lingering emotions?
Writing and journaling are probably top of my list. They help me process my emotions in a more positive manner, help me get rid of the clutter and shift my focus back onto what really matters.
Time in nature is another one. Observing all the beauty that nature has to offer makes me realise that things aren’t so grim after all. It makes me feel more grounded, it slows the avalanche of thoughts and it helps me appreciate the simple things that are too often taken for granted.
Deep breathing…something so simple, so accessible and – BONUS ALERT – absolutely free of charge. Deep breathing has a way to calm those strong emotions. Once the intensity of those emotions is under control, it becomes easier to focus on what’s truly important in the great scheme of all things and to not stew so much on past events. Deep breathing activates the parasympathetic nervous system which in turn allows your frontal cortex to re-engage and view things more rationally.
Exercising is another strategy that I use consistently. The intensity or type of exercise does not really matter as it’s more about moving my body, oxygenating my blood and doing something that makes me feel good. It’s also about making time in my busy schedule for self-care and myself.
Read the full story: Processing strong emotions after brain injury
Processing strong emotions after brain injury
Christmas holidays are a special time of the years for all of us. However, when you have to factor in chronic health issues such as brain injuries, holidays can be a harsh reminder of your shortfalls too.
In this blog, I elaborate on how I’ve come to process emotions around this topic and I describe a few tools that have helped me better manage my strong emotions when it comes to others moving on.
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Connecting with Encephalitis Survivors
This topic came as a suggestion from a follower and brain injured friend. To be honest, when I read that suggestion, I was surprised that I hadn’t taken the time to write about it earlier as connecting with others has been such an important part of my journey.
As we know, brain injury can be very isolating and we can often feel misunderstood by others. For many, it is an invisible injury so grasping the extent of the cognitive and identity changes that have occurred isn’t that straightforward. Although the perception of others can play a role when thinking of connecting with others, I also think that we individually seek some understanding , some clarity about what the future might hold and a sense of normalcy, so this is an aspect of connection that we also need to bear in mind.
My personal journey with connecting with other survivors
In the early days of recovery, I was given so little information about my diagnosis, my recovery and its potential outcomes and I remember feeling lost and scared about it all. I wanted to connect with other people who had had encephalitis to get reassurance, but also to get a true picture of what life may look like going forward. I eventually hopped on social media and looked for existing support groups. To my delight, there were quite a few and I started following them all. By reading the posts and associated comments, I was getting a heads up for what things may be like, but I found that many of the groups that I was following weren’t necessarily solution focused. I knew that no two brain injuries were the same, but the pictures painted were often grim and left little place for hope at times. That being said, I did come across some fabulous individuals that I’m in touch with today.
After a while, I put some of the online groups on the back burner as they could be generating more anxiety than comfort if it makes sense. Dealing with my personal anxiety was overwhelming enough at times so I had to make this call to best support my mental health and overall recovery.
Attending face to face brain injury support groups wasn’t convenient for me either as I wasn’t allowed to drive, I lived in a rural area of New Zealand where buses weren’t accessible and most of my free time was taken up by medical appointments or resting. I sort of went MIA for a while and although I was feeling very isolated, my desire for connecting with other brain injured people had gone dormant too.
That desire for connection eventually came back and I started reaching out to different people recovering from brain injury once again. I wanted to build connection based on honesty and authenticity, but I also wanted those connections to spark some hope and to be solution focused. I wanted those connections to support recovery and for them to be conducive of helping me & others move forward. Around that same time, I had just started my blog so when writing a blog, I knew I had to find a way to be relatable yet install a sense of hope too.
It is a very fine line to walk between too little or too much honesty.
I eventually came across a few more individuals with lived experience of brain injury and who were seeking similar type of connection. I think this was a pivotal moment for me as it opened up my eyes to a whole world of opportunities. It reminded me that there are so many brain injury survivors out there also seeking understanding, direction and connection. From there, there was no going back, my train of thought being: “if it helps one person out there, it’s worth reaching out.”
And then, Covid hit and really took things to another level. All of a sudden, everyone could relate to this feeling of isolation and it really confirmed to me that the need for connection is essential in life…potentially even more so for people who have been and will carry on facing health challenges once Covid has been and gone.
Read the full story: Connecting with brain injury survivors
Connecting with brain injury survivors
How connecting with other brain injury survivors can be beneficial to your recovery. Tips on connecting with brain injury survivors. Benefits of connecting with brain injury survivors and sharing my personal experience doing so.
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Three Chronic Woes #chronicallyill #ChronicIllness #overwhelmed #Neuroendocrinecancer #ME myalgic encephalitis #EhlersDanlosSyndrome
How do you cope when it is ALL coming at you at once? I was once a very independent, successful, super type A, corporate America gal who was so capable. Three chronic illnesses later I am exhausted, always battling brain fog, and my past coping mechanisms no longer work. Very quickly my life has spiraled out of control & I am feeling in such utter chaos that I don’t know how to right the ship. #hopeless #needhelp
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Apprehensive
So today I went to my gastroenterologist and found out I need further evaluation to rule out conditions before settling on ibs and treating that with antispasmodics they said I definitely am a zebra with the complexity of issues autoimmune cardiac mental health and so forth And though I said it in jest it's actually covering up insecurities and paranoia that I'm a fraud and my illnesses are not valid despite true symptoms and extensive meducstins and hospitalizations and procedure ice come to doubt myself because of doctors initially saying fibro and myalgic encephalitis don't exist as a teenager when I just wanted to feel better regardless of it's was mind or body driven but with the schizoaffective this has be become a deep seated paranoia that my doctors are out to expose me as delusional for there own laughs reality testing tells me this isn't true but feelings hard to shake the tests are producing a lot of anxiety like are they giving me placebo is this all a test I know it's just my diseased mind conjuring up these thoughts but his do you other "mighty warriors" cope and quell the obsessive tape of uncertainty playing in your head #schizoaffective #POTS #ChronicFatigueSyndromeampME #granulomaanulare #Zebra just want be back on the Oregon coast so ill try to meditate on that to get to sleeo
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