Posted by: E (The Third Glance) | June 14, 2014

A brief update – why you haven’t heard from me in a while

Hello, my dear readers, it has been a while, hasn’t it? I promise, this post has very little insightful about autism or my brain or anything. I just have been completely absent from the internet for a while, and am surfacing briefly to say hello, let you know that I’m still kicking, and say thanks for sticking with me. Hopefully more substantial things will be coming later. I’ll probably be writing a bit about my experiences of the past months, and what it’s like to be (not openly) autistic while trying to navigate the US medical system. I just haven’t found the words for that yet, especially since its still very much ongoing.

For those of you who want more details, let me just say that I’ve been sick. Very sick. In and out of the emergency room and hospital. No one can figure out whats wrong with me. No one seems to want to talk to each other. I’ve been doing my absolute best to stay afloat and stay in grad school – that’s the source of my happiness, income, and health insurance, and while some kindhearted people have suggested I take a leave of absence, it is more likely to hurt than help. I love what I do, and it’s the one thing that gives me some purpose. My advisor has been extremely supportive and managing his expectations for what I’m able to do, and stopping grad school would leave me completely focused on “health”, which, at the moment, is rather depressing. It’s kind of my outlet in a way.

I’ve been trying to manage a very interesting team of doctors, who won’t speak to each other at all except through abbreviated “visit notes” that go on my chart. No one has any answers, and they continually blame the problems on “well, it’s probably Doctor A’s specialty” to “well, I don’t know, it must be this doctor B’s territory”. It is ridiculous. One of my meds backfired and it took us nearly 2 months to figure out what was causing the problem. I’m *finally* starting to come out the other end, and maybe some of this will let up a bit. But as you might imagine, while I’ve been juggling all of this, writing, or really, doing *anything* beyond the research and work I’m currently paid to do, was out of the question. This is my first functional day in over 2 weeks. I should be working, but here I am instead. That’s one of the reasons this is short and purely information, not analysis.

On a much happier note, about 2 months ago, I finally got out of my hell of a living situation, and am now living with an extremely wonderful person who I absolutely adore, who looks out for me, and genuinely cares about me as a person. Just that, alone, has done wonders for my mental, if not physical, health. And it’s really helped out when I have physical health flares, because I know there’s someone around if I need help. You might hear some from my new roommate on the blog at some point, too.

And with that, I’m off to do some science-related things. Best to everyone – I’ve still been reading, and hopefully I’ll be back to contributing soon too.

E

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Responses

  1. I’m glad you are living somewhere safe and you have good science distractions.(Because science!)

  2. Good to hear from you! Hang on…..

  3. So sorry to hear you have been sick! I’m glad you seem to be emerging out of your suffering, finally. Also happy that you have found far better living arrangements — that new roommate sounds fabulous! I’m not entirely surprised that the doctors are having trouble diagnosing your problems and treating you. I have learned from my autistic son that illnesses don’t necessarily affect him as they affect “neuro-typicals”; and, he reacts differently to meds than most people would. Autism complicates everything, it seems! Anyway, I wish you the best and will pray for your return to completely good health.

  4. Glad you are back

  5. Happy to hear from you again, your insights help me to understand my boy better.Can I suggest something in order to help you? I have been studying biodecoding for a while, related to the New German Medicine, maybe you can find an answer to what is going wrong with you. Give it a try. Hope it helps. It helped me a lot.Get well and keep sharing please

  6. Sending love and hugs and virtual stuffed animals to cheer you. Know that you are in my thoughts <3

  7. I am so sorry to hear you have been feeling so sick. Hey Fred a couple of your posts and enjoy them. I have a special needs daughter that is medically complex and then last August I myself was diagnosed with MS. I have found that adult doctors suck most of the time to work with compared to the pediatric docs that we’ve had the joy of working with my daughter. It sounds like you should demand to have a roundtable with all of your doctors in a conference room. They are wasting your time! They need to sit up and take notice. This is the least that they you obviously :-(. It might be a stretch, but you might try checking out some Facebook groups related to the various things you’ve been going through. I have a Facebook friend who has a special needs little boy and runs a group called Medically Complex Medical Advice. I know there are nurses who also have special needs kids on there. In our house, the nurses are the ones that allow the parents to sleep well after the little clump of doctors has left your child’s room.
    I also know about spoons. Some days I wake up with none. I wish you all the best in solving this mystery and I hope that you feel much better sooner rather than later.

  8. Dear E,

    I am sorry for the health issues you have been experiencing. I hope you get good answers and a speedy recovery. I send you many hugs and well-wishes. <3

    Lori D

  9. Don’t worry too much for blogging at the moment (still glad to hear / read from you ;) ). I admire your determination which kept you continuing grad school in such difficult times. May nature provide you with some great data right now to speed up your recovery.
    Best wishes
    Ernest

  10. Ugh, so sorry for your health care system tribulations. :P I know too well the story of doctors who won’t communicate and refuse to think. Hope you’re feeling better soon!

  11. We have had remarkable results with essential oils. Gut issues dissapeared. Anxiety related issues muted. With no harmful side effects. Hope to hear more from you soon!

  12. E., I’m sorry you’ve been sick but glad you’ve found a safe living situation and a loving partner. Hang in there and I hope your health gets better soon. I’m sure you’ll have lots of helpful insights about navigating the health care system, but don’t stress out over being absent or feel guilty about it. Take care of yourself and we’ll be there when you return. Love, mosaicofminds

  13. Glad you’re feeling better. Keep doing science things and we’ll hear from you when you’re better.

  14. Doctors are scared of being blamed for a mistake, so they stay where it is safe from their point of view, and that means using treatments that have shown itself effective against common ailments. If what is wrong with you, is not common enough to have had large randomized testing done to find some effective generalized medication, then you can’t expect to get help from a team of doctors.

    If say Asperger’s suffer from stress hormones living in a society made for neuro typicals, and to much stress hormones over time often lead to stomach problems for Aspies, treating the symptoms will not make the sickness go away, as it does not change the cause of the problems.

    Treating the symptoms could even make you more sick, as medication can make you tolerate more stress, before the additional stress causes the symptoms to reappear once more, but now with both the side effects of the medication and the possibility of the stress inducing new problems.

  15. Hang in there, E! I have some idea of what you’re going through with doctors, as last year my NT daughter was having some health issues herself. After working with her primary care doc as well as the local hospital and not getting any answers for months, I finally had my fill of the runaround and took her to the ER at another hospital in another city about 30 miles away. Whaddaya know, they admitted her, ran tests, and said “Here’s what it is and here’s what we’re gonna do about it.” She worked with two awesome pediatric docs (who were willing to talk to each other, I might add, and whose offices are one floor apart in the same building!) and is doing much better now.

    Sounds like you really need to get your docs all in the same room to figure out what’s going on. Good luck, and glad you’re feeling better.


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