Last month, I was officially diagnosed with seronegative autoimmune brainstem encephalitis, which can recur and in a similar manner. How fun. My neuro-immunologist also ordered more outpatient therapies for me because I’m “not getting better.”
After I waited a month for the first physical therapy appointment, the receptionists aggressively declared that my mother and I need to wear masks. I can’t wear one due to my acquired hyperekplexia (exaggerated startle response with movement disorder), and my mom has had serious eye and face rashes and wasn’t even planning on staying.
The physical therapist—who was nicer than the receptionists but still ignorant as hell of my diagnoses—said that the mask mandate is in place to protect their “compromised” patients. She then went on to imply that I will have to work out in a separate, tiny, hot room to “protect” others from my maskless, spastic self. Hmm so soon you forget your audience! I seem to have one of the deadliest autoimmune diseases possible, but I have *another* condition that makes it impossible for me to follow your rules. I am also one of the most physically disabled individuals in this place! Are my needs any less valid than others’??
WHY are some people unwilling or unable to understand when rules need to be broken and accommodations made? I hate being like this; I wish I were normal and healthy; I never want use my conditions to be obstinate and rude...
BUT, since becoming disabled (and I don’t use that word lightly), I’ve realized how ableist and cruel and unreasonable some people and systems can be.
As I stumbled out of there and saw a third receptionist with his mask down, I thought to myself: “I am alone. Completely and utterly alone.” At least half a dozen doctors have already said they can’t do anything else for me and pushed me off their caseload, and even more practitioners look at me like I’m crazy, like I’m faking. Trust me, no one would or could EVER fake this and especially not for TWO YEARS. (That’s what I’ve been trying to prove to the disability aid agencies for the past few months! That requires another post ha)
There is no upside to this. There is no end in sight. There is no way out. The worst thing I can do is add unnecessary stress from fools who don’t know or understand anything about me, or, even worse, believe that I am the problem and threat. Needless to say, I’m not going back to outpatient therapy. I’ll just carry on the best I can—alone. At least I have my family, a couple good doctors, and the ES.
P.S. There are numerous Bible verses explaining how society should treat and care for the most vulnerable. In my experience, we really suck at it. “You shall not curse the deaf or put a stumbling block before the blind, but you shall fear your God: I am the LORD” (Leviticus 19:14).
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kitnkaboodle
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Sorry to hear that things are being so aggravating for you, especially with the medical people.
In my saga, I had to go to a lot of appointments that ended up being of no help whatsoever. However, I was "playing the game" that my neurologist wanted, at the advice of my primary care physician. Essentially, no stone was left unturned, which was a crucial factor in the final decision of my SSDI hearing. Had I refused to go to the appointments, it would be seen as a failure to take measures that could "cure" me. So I played the game and tried to smile, as annoying as it all was.
In your case, the more evidence you have, showing all of the different appointments you kept, might eventually be useful as you persue your case with the disability agencies. However, once you have exhausted any possibility of assistance/improvement from any given medical provider, it's time to shake the dust from your sandals, and move on. Keep your paperwork in a folder, and put it away.
Every appointment I go to, has to be "cleared" through my primary care physician. He has a Texas-sized folder of information/appointments/specialists I have been through. In some cases, he has dismissed some appointments made by doctors from neurology folks, citing them as being "a waste of time". So, hopefully you have a really really good PCP to coodinate everything for you.
The mask thing is quite annoying, and essentially useless. I wore a mask, was fully vaccinated, and got Covid all the same! A recent visit to my PCP office required the use of masks as well. Since I could wear one without issue, I put one on, and told the person at the check-in desk that masks were useless. I was given some sort of stern lecture about their importance and I let her finish. Then I told her, "Unicorns are quite real too, aren't they?" Then I took my seat and waited to go in to see my doctor.
At one point in time, people thought the earth was flat, too. It's best to either ignore them, or in your case, don't go to such places, as you have already chosen to do!!
Now it's time for me to see what I can accomplish here. My recent improvements can be a dangerous thing, as I learned: I blew a hydraulic line on my backhoe the other week while helping a friend move about 7 tons of timber from my land!! I have to be careful with how hard I push myself, AND my equipment!!
Hoping you have a better time of things in the near future, as your post-e journey continues.
Thanks, OG, and sorry for the late reply. I’ve had a rough time lately. In addition to all of this other stress, I think I experience the “anniversary effect.” I got sick nearly two years ago. As the leaves changed, I lost my mind—and countless other things. Being reminded of that brings stress and sorrow.
Yes, you’re right about conscientious efforts helping with the aid applications. My PCP has never helped me; in fact, I should find a new one because she knows nothing about E and has said BS like I “should stop managing my illness and recovery and just move on.” I haven’t talked to her in 1.5 years.
I have been to dozens of specialists and have had countless tests. In fact, the SSI interviewer stopped my sister from listing all of the doctors, prescriptions, and tests because the list was so long. The SSI interview took 3.5 hours over 2 days. My brother and sister had to take the lead on it because it was way too much for me. I have Medicaid, SNAP, AND, but I’m waiting for SSI and Long-Term Care (Medicaid) so my siblings can be paid for caregiving.
Haha I told the receptionists the same thing about masks (PSA: only N95 work well), but in a much ruder way. Sometimes I have verbal outbursts that are quite appalling to myself and strangers. I seem to have lost all tact after E in addition to the inability to understand jokes or detect sarcasm well… 😅
I wonder if the receptionists and even PT realized that they were talking to a brain-damaged person. I assume most people realize there is something neurologically wrong with me, but they probably think it’s CP or MS or something. I wanted to apologize to the receptionists on my way out, but the words wouldn’t come; in those situations, I can’t think or speak clearly. I went home and cancelled all future appointments and told myself they would want to see me again about as much as I would want to go there again. 🤷♀️
For some strange reason, every time I get a message from you, my supply of cat food needs to be restocked! 😆 My cats don't want to be insulting, but they prefer the Friskies brand of food over the Kitnkaboodle brand! 🐈
Getting a bit more serious, I am sorry to hear that you have been feeling so poorly and that life has been such an endless series of fruitless events. I went to the "million specialists", as well and after a while, it's so discouraging that it can make us give up hope. For the most part, doctors/specialists can only document conditions and suggest medications that MAY be of assistance. In the end, the vast majority of healing happens on its own, without any sort of medical assistance. Time seems to be the major factor. That, and plenty of rest, nutrition, and patience.
In my opinion, it's still important to have a good PCP, though. Your statements regarding your current PCP mean that it's time to get another one, as soon as possible! Anyone who tells you to stop managing your illness and recovery and just move on, is obviously a very ignorant person who has no knowledge beyond what is in a text book from medical school. These sorts of "doctors" are the ones who collect a large fee to tell people not much more than the familiar, "Take 2 aspirin and call me in the morning."
My neurology specialists are the ones who helped me manage my illness, and my PCP wholeheartedly agreed. Nobody ever said, "Do this and you will magically be cured." They told me that it would take a lot of time to heal, and that knowing what to expect under certain conditions would prepare me to deal with, and accept, the outcomes.
I also don't like it if I am a bit angry with people. And like you, I like to make amends if I feel that I might have said the wrong thing. But I wouldn't worry too much about receptionists at doctor's offices. More often than not, they are not very kind or understanding, either. Fortunately, such people seem to have the shelf life of a bunch of bananas. So from one appointment to the next, it seems like a completely new set of people are behind the desk. In a nutshell, don't worry about it too much!
Thanks for hoping that I am well. Truth be told, I am now halfway through my 5th year of recovery and things are improving at a much quicker rate for me now. They are improving so much that people who have known me for many years have remarked at how they really can't tell that anything ever happened to me in 2018! It's been a very difficult fight and I have always pushed the limits. But by doing so, I believe it has been of great benefit to my getting much better. Everyone must test their own limits as they see fit, but I'm such a stubborn old gnome that I always push much harder than others!
So Kit, I hope you enlist a great PCP that will actually help, and maintain your forward progress, even when it seems that it's not happening. Don't push limits until you are able to, but if you find that you are able to, hold on for the ride of your life! (It's a good, but tough ride, trust me!) As always, you can PM me with any thoughts or concerns you might have that don't belong on the main site here.
Short list of things I have done this week that I was not able to, a few years ago:
Drove over 100 miles to purchase a car. Attended an apple cider pressing event with over 100 people in attendance. Invited a co-worker to go on a drive with me in the new car and was SHOCKED that she said she would actually go!! Finally, I am coming back to life. But it has taken the better part of 5 years.
Well done in that drive!!!! I haven’t managed that far yet but I’m aiming to once my eye has healed!!
Seriously. You are right. August 2018 for me and I can finally honestly feel that huge step forward. Like I said to Kitnkaboodle, being able to sing, whistle, listen to music is such a big and happy step. Take care. Keep going forward!
Hey, OG. Sorry for another delay, but I will respond in full when I get on a computer—maybe tomorrow! I need to see your previous comment on a bigger screen haha just wanted to make sure you knew I wasn’t responding to everyone else and ignoring your comment!
OldGnome - here I am! Weeks late, but better than never! I assume your cats need more food again by now?
Yes, I need to find a new PCP, but I first have to manage two upcoming SSI evaluations in a couple weeks. Did you have to meet with their consultants as well? SSI is requiring a medical evaluation and mental status evaluation of me. Not sure why they can't just read my 700-page medical file or ask any of the 20+ medical professionals for their opinion. Oh well. Let me know if you had to do an SSDI appointment and what it looked like for you or if you have any advice!
Wow, so does that mean you got sick in early/mid-2018? So 4.5 years ago? That's amazing you're doing all of this recent stuff. Hope you still take rests as needed! And share more about this joyride with your coworker, please! 🤔
Peek-a-boo, I see you!! 😆 No worries about being late in any reply; that's how life goes for us e-peeps!
The cats send their thanks to you for being concerned about their food supply! I believe you got "3 meows" which is about the highest rating one can receive!
Yes, I had to run what was essentially a "medical gauntlet" which was required by the folks at SSDI. Even though you have applied for SSI, it sounds like the requirements will be similar, if not very much the same.
Being a government agency, it seems like thier goal is to find ANY cause to deny a claim. That cause can come from any medical professional, be it one of your choosing, or one of theirs. You could theoretically have a million doctors who support your claim, but the government still requires you to see one or more of THEIR doctors. This is simply the way it is, as I found out.
(I also grew a bit annoyed at the fact that they did not find the reports from my large quantity of doctor's visits, to be sufficient. But once again, you will have to "jump when they say jump, or run when they say run".)
Annoying as it all may be for you, I believe there is a "silver lining" to what's going on. The very fact that they require you to visit their consultants for further evaluation means that they are taking your case seriously!! This is important to remember and almost be thankful for!
Many, if not most cases are dismissed for the multitude of "fakers" out there who are really just rolling the dice and seeing if they can get something for nothing. They are not taken seriously enough to even merit a visit with an official government consultant.
My case was denied on 2 separate occasions. On the third application, they got "serious" and I was sent to a battery of different government-based consultants. What is different, was that at this point I had retained an attorney, and eventually had a hearing with a Federal Judge! Looking back, it was a bit scary, but it was all for the best, and the outcome made the entire ordeal worthwhile, and very necessary.
If you get to the point of having to appear before a judge or magistrate, please let me know. I have some more tidbits of wisdom to offer.
You are correct! It is 4.5 years since I almost died when the big-e hit me! Although I am still having difficulties, I have learned to manage them to squeeze the most I can out of life, instead of simply sitting back and doing nothing. Has it been easy? Certainly not, but quite worthwhile!
The joyride thing is something I would not have contemplated a while ago. Nowadays people have told me how amazing my recovery has been, as they have noticed. This is a great thing, as I expand my limits in more areas than one! 😉
One major goal I will be attempting is to drive about 200 miles round-trip to Pittsburgh in the near future! My newly acquired Ford Fusion is a much bigger, road-worthy car than my FIAT 500s, so I should do just fine. This will also remove another limit that I have had for a long time!!
Wishing you all the best, and please do not hesitate to PM me with any other questions you might find unsuitable for the main page here.
Hi to both you and Kit. That drive sounds amazing when you do it. And just to add that like you, over 4 years later, I know how far I’ve come. I too have learnt to be grateful and appreciate the small things because I nearly wasn’t here to see them.
E will always leave us with restrictions I guess and there will always be down times, but somehow as I know I’ve said before, the good things are sweeter and brighter. My husband and I had a beautiful drive in the hills behind us )he drove) and simply bought a coffee and sat on a bench outside the church in November sun, looking at the sheep and hills and autumn trees. A memory etched and I believe clearer and brighter because I didn’t think I’d be doing that again in those early days.
Good luck Kit. I hope this all works out for you smoothly.
I’m so so sorry this has happened to you. I have seen how you strive to be positive through all the challenges E throws up and this should be recognised by professionals. Sending you my thoughts and prayers. X
Thank you, Wygella! I really appreciate the kind words. Sorry for the late reply. I’ve had a rough time lately because of stuff like this and also my upcoming second “anniversary.” The leaves changing is one of the last things I remember. I woke up to snow and a very different life. Remind me.. which post-E year are you in?
I had my 4th anniversary in August so Old Gnome and I are a bit further on than quite a few of you, But wow you were out of it for quite a while! I only lost a couple of days. But when I had the really bad seizure my eyes locked and I’ve just had what I am hoping is my last eye op to put a tube in my eye. I know how challenging your life is now though and I do pray you will start feeling a step by step, a bit at a time progress despite medical non help!!
Old Gnome is right too in that 4 years later people who know me well are commenting how much stronger I am. In all honesty none of us can ever expect to be ‘normal’ again whatever that was, and whilst I can finally listen to music again. And sing. And whistle. ( that’s literally in the last 6 months. And is absolutely joy!) I know I’ll never be able to cope with loud live music or the lights again. But I tell myself often. ‘Don’t cry because it’s over. Smile because it happened’. ( I read that soon after I started to recover.).
So stay strong Kitnkaboodle and know we’re rooting for you.
Wow, happy fourth anniversary! And I like what you said about us not being “normal” again. It’s true. So many doctors said to my family early on that I’d make a “full recovery.” They couldn’t be more wrong! In a catastrophic loss like this, how could we ever be the “same” again? It’s not possible. But that doesn’t mean life can’t be beautiful again, as you and OldGnome repeatedly show me! I’m so thrilled you can enjoy music again, although you can’t go to any raves haha
Lovely to hear from you. Very few ‘experts’ really understand what’s happened to us, which is why this group is so helpful because we really do understand. Unfortunately my eye op initially was successful but because of all the damage to the eye the tube moved. Emergency op last Tuesday (fantastic hospital, staff and doctors. I’m so lucky there) and everyone now hopeful this will work. Ah. Encephalitis just keeps giving!! Having said that. Life is still beautiful. I couldn’t have written that yesterday because I was so down and disappointed, but today the sun is shining. My daughter has just FaceTimed and made me laugh. My husband cooked my breakfast and my sister is coming to see me this afternoon. I can sing again. Take care. X
Wygella - I always appreciate your prompt and thoughtful replies, even when it takes me days or weeks to respond. I've had a tough time lately, much like Remos . But I find comfort in knowing you all understand; it helps me not to feel so alone.
I'm sorry to hear the eye tube moved. Did the emergency procedure keep it in place? How is your vision, and how in the world can you manage reading and looking at screens??
Yes, you're right that, on some days, the darkness overwhelms. It reminds me of Psalm 30, especially verse 5: "...weeping may last through the night, but joy comes with the morning" (NLT). 🌅
That verse has come to me a lot over the past few years and particularly with all that’s been happening with my eye over the past 9 months. I’m so sorry you are going through a dark patch It’s so hard when you are in the middle of them to believe there will be light But there will be
Thank you for asking about my eye. I am very lucky in that my right eye has almost perfect vision so even with my left eye closed or not working well I have plenty of good sight to function. I have to do things in short bursts though as even with the eye closed it still obviously moves with the right and gets sore
I’m going back weekly at the moment while they monitor whether this third operation is working. Again I am blessed with the amazing hospital and care and that at least 4 years after E I can cope with all the visits, tests, sitting upright in waiting rooms etc. I couldn’t have done this a couple of years ago.
I’m so grateful for this place where we can all be honest and say when life sucks and E gets to us as well as share good things. So please take care. Sending a hug and a prayer.
Me too Kit. It’s so good to share. This eye condition is unlikely to affect most people, but I’ve had a bad left eye all my life. I was either born with it or it happened when I had meningitis as a baby. So when I had my last major seizure in hospital my eyes locked tk the left and wouldn’t move for quite a long time after the seizure finished. Subsequently I had a bleed in my left eye from that plus probably not helped by the massively high temperature.
Because of the bleed, it blocked the channels at the back of the eye which drain fluid. The tube (now removed and replaced by a stent) serves to drain the fluid and therefore the pressure. So not something as I say likely to affect other E warriors.
I was interested when you said to Heavy Chunk about driving, because I was able to drive and apparently even with this I will be able to legally, but I’m not sure I’m actually going to have good enough sight to do so and like you this may have to be my choice. Thank you that helped me really think this through.
I’ve been given songs all through this. As I said I’ve not been able to sing since E until about three months ago so the songs were in my head but even so - Great is Thy Faithfulness, You Are My Hiding Place and many others. Yesterday it was One More Step Along the Road I go! I’m now entertaining (or driving mad) my husband by singing them round the house. 😊. Psalm 121 5-7 is good. Take care. God bless.
This is all very upsetting . Sadly there is a common thread running through your story which many may recognise. The system quite often seems lacking in knowledgable, experienced and just as important compassionate clinicians.
As you say we are to a greater or lesser extent all alone with our condition. Thank goodness we have our friends and loved ones as well as each other to lean on.
I rediscovered an old song by the American group R.E.M. called “Everybody Hurts” recently which was released at the time of my “late youth” (30 years ago 🥹) which I listen to quite often. The words resonate.
I know you’re strong and I know you are wise and I know you have your faith so I don’t want anything I say to come across as shallow or flippant.
Wishing you strength, hope and kinder days ahead. We’re all here for you.
Thanks, Remos, for the sweet reply. Sorry for the delayed response. It’s been rough lately, especially with the second “anniversary” approaching. I listened to the song, and the lyrics are very true. Everyone will suffer eventually in some way. I’ve been reading this good book on loss called “A Grace Disguised” by Jerry Sittser. Highly recommend. Short and easy to read with big font.
Also, please don’t ever think you have to say the perfect thing to me. Like I told OldGnome , I’ve lost tact, so maybe sometimes I act gruff or annoyed—but I’m really not. I’m more likely treating the main post as more of a journal entry or just being pedantic or honestly thinking that I’m right about something. I’m not always right nor do I want to live in a bubble, devoid of insight and experience from others. I truly apologize if I’ve ever done that on here or elsewhere. I really do want to hear from everyone on here. We all have something to add.
oh bless you. The one thing we all recognise is that inability to always monitor what we say to write!!! That’s the beauty of this forum. We understand! Understanding is better than careful words I reckon.
Thank you so much for the sweet note! You’re absolutely right about “suffering in silence.” I’m convinced that disabled people are some of the most forgotten and excluded members of society. But I guess I’d rather be forgotten than accused of faking haha. But where did the idea of us faking even come from?! Historically, I mean. It’s asinine.
And thank you for the prayers! Much appreciated ♥️
OldGnome - moving things down here for the sake of my brain and eyes.
Thanks for the great insight. It is reassuring to know that these upcoming evaluations are happening because they are taking my case seriously! I didn't think of it that way. I thought they do evaluations for every case and will deny me regardless. I think about a third of cases are approved in the first round. I'm not counting on it, but maybe, just maybe, I'll be one of those... One of the lawyers thought so, but he might have just said that because he didn't want to put in the time to help me without a pay-out; your lawyer said that's likely.
The phone interview was in late August and early September (over several days ugh), and the evaluations are set for mid-November, with some extra paperwork on my daily life in the meantime. I bet there will be more requirements after the two evaluations, but, if not, SSI approval will end up being faster than the state caregiver payments for my family. Crazy!
It's hard to believe that anyone would try to rig the system. If I could work, I would. It would be much easier to get a job than go through their hellish procedures, and more money would be made! Presumably anyone like us applying for SSI or SSDI is doing it because there is no other choice. I literally have $4 to my name right now; I get $240/mo in temporary aid for "needy and disabled adults" from the state. So, yeah, I'm planning to get really rich off of government assistance.
Wow, you're such an inspiration to all of us on the forum! Keep sharing your wins and setbacks over the years. As with Wygella , it really helps me and the rest of us to hear about your long-term arcs.
Speaking of cars, my parents just sold their big Suburban and got a Chevy Impala. It is more comfortable for me to ride in! A Fusion is similar to an Impala, right? Forgive my ignorance - I don't know anything about cars!
Hello kit! Sorry for the 4 day delay, but it's been unusually busy for me lately, again!
It sounds like you are staying on course regarding your battle with SSI!! There might be another gold nugget of info to be aware of: When I won my case with SSDI, payments went back to the day I filed, so I ended up getting a rather large "lump sum" check.
I poked around and according to what I read, SSI will also pay you "back pay" going back to the original date you filed for benefits. They supposedly pay the total amount in 3 payments, but the payments are spaced 6 months apart, instead of one lump sum. This is not the greatest news you can receive, but at least it's pretty good!!
Regarding the cars, yes, the Fusion is just a bit smaller than the Impala, but is still a roomy/comfy car for someone like me. Like I said, its road-worthiness will make it a lot easier for me to try to take longer trips. I have owned a LOT of Chevrolet vehicles over the years, including a 1956 model 210, and a 1967 Impala 2 door hardtop! I bought the Fusion because it has a manual transmission, which I insist upon! Plus for a car weighing over 3600 pounds, it still gets a minimum of 25 MPG city, and about 37 on the highway, which is excellent!
Here's to hoping for your eventual success with your case!! It will take a lot of time and patience which are actually also required to deal with the post big-e residual symptoms and problems! So we are all "seasoned veterans" in some way!
Keep fighting that good fight!!
OldGnome
My old Impala looked like this, except for the fancy wheels. Mine had stock factory steel wheels/caps, and a 283 engine with 2 speed powerglide automatic. Completely boring to drive, but only cost me $300!!! I didn't keep it long at all!
As an outpatient you have the extra load of making it to and from appointments plus the stress of explaining once again what your problem is. Getting an adequate response is a long shot but you have to try. But repeatedly you/I get to the point of wondering if this whole setup is one step forward and two steps back. But to qualify for the benefits and support you have to jump through those hoops.
Just staying sane is an achievement and making it on to the forum is pretty good. You are helping others by sharing and getting back on your feet each time there is a setback. I've just returned from a pain management appointment with a doctor who has previously wanted to reduce my morphine. I convinced her we were on the the right track and that with pain management and exercise we can make progress.
One small step for man but a giant leap for an Enc sufferer. I'll have a rest, a cup of tea and a biscuit and rest on my laurels for a while. (rest/sit on your laurels - to be satisfied with what you have achieved).
It's always a treat to see you posting, keep going. Best Wishes G2
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I just wondered if anyone can help
Any other parents of very young children here? Searching for hope. 
Unknown Cause Encephalitis
My Dad's symptoms are worse
How to accept or come to terms? 
