Me, Autism and being sickThis is a featured page



For those who wish to, (I would love it very much), you can start a thread on this page with your well wishes, and prayers if you pray... It would mean tons. - For those who might not know how to start, here may be a sample prayer that would be wonderful: Dear Lord Jesus our savior and lover, I pray that Kris would be healed both mentally and physically (even more abundantly than before) as soon as possible and in through aweing ways that touch others. Give her this healing so that she can continue to do your work and to help other families with people touched by Autism. Thank you Lord God and I say this prayer with faith, even if as small as a mustard seed I know you will listen and respond, and I praise it. Now go to work and be the best Father this world needs and in the life of Kris. In your son's sacrifice I pray & rejoice, AMEN. - If you do not believe in Jesus or God, you can just say 'a higher power' so as not to offend.

My book available here: http://stores.lulu.com/autismbook1

09/08/08
UPDATE; Viruses travel in the family. I had been to petsmart and some other places (good), got nice new glasses (good) -transition was hard but got through it and even helped out the eyeglass people who had Autistic children themselves. Got energy to dress up and get pictures with my brothers, had some b-day parties (low key thank goodness) and I may upload them. Visiting and sharing love with not yet adopted animals with Sasha by my side. Got some free stuff from where we got Sasha and like the people there so incentive to go out more. Starting some new meds, gradually decreasing meds while trying another, etc. Sort of of just started so we will see what that brings. I got a virus and got bad fluid in my ears so made dizziness that was getting so better not so good. I am continuing on my therapy and scheduling which is helping through this trial. I had some tests done to see if I have strep or another throat thing. Itching bad and Asthma not so good but using treatment plan. Our animals have colds now too :( So, please pray for them as well. I've been very tired from all the meds and prescriptions combined creating hives & stuff, so not been on lately. Trying to stay awake right now, kind of LOL. So that is an update for you all.

07/19/08
UPDATE; still having some bad tics (including breathing tics) but am almost done for going to the therapy place at the hospital - only 2 more times!!!!! :) :) That's awesome; I'll still have to do it at home but done soon for having to go to the place to revise and get new ones - so dizziness/lightheadedness/tipping getting better; been swimming and been walking more even in a couple stores like Target; I have tests 'cause of bulging in my stomach so they'll put me to sleep to do them. However, I am improving - Praise God for him and the people that he is sending me to that are chrisitans and who are praying for guidance as doctors to treat me correctly and as quickly as they can.

UPDATE: Just got home this morning from the hospital. I was gone into ER. My left eardrum was bulged and spread down left side of neck (infection from that so have Fevers right now). The right eardrum was perferated. This all caused dizziness and extreme pain. I got big Valum prescriptions, ear drops for swelling, pain, etc. for the eardrums, and pain meds. I have them every 4 hours for now. The doc said if not get better, I come and see him again for more tests. I guess the only good thing about this is that it may finally shed light onto at least 1/2 reason why I'm so sick - dizzy, lightheaded, virus, etc. (I've had ear pain for the 16 months I've been sick... it was said, "in my head." it all spiraled out of control when doc I had didn't listen to me when I said, "I don't think the ear infection is gone" - 16 months ago. These new doctors and hospital staff (who know me since they see me a couple times now, God bless them for listening and doing the necessary things peacefully. -01/29/08-

Being sick when you have Autism makes every aspect of Autism harder including vestibular wise and sensory, tics, etc.

For those who have been checking for small updates at the top of each page and for those wondering, etc. how Autism can affect doctors and their diagnosis, here is my story so far in a nutshell.

Here it is:

This is what's happened so far... (In a nutshell as it would be too long to explain everything and include everything)


I was sick with Valley Fever for 9 1/2 months (this went undiagnosed for over 6 months because the doctors said it was in my head, it was all Autism induced and I was panicking until my eyes started moving back/forth and I almost collapsed (I couldn't stand on my own, was practically being held up by people... then they stopped and thought maybe it wasn't in my head and not just Autism induced and also noticed the rash all over that they should have noticed before in both the doctors offices and the ER.

Because of that I had to have a spinal tap while I was asleep which I came out screaming and had to be rushed back and hooked up to a bunch of morphines, etc. I got MRI back which I waited to get for 3 months because they again thought I was panicking and said its just Autism induced the anxiety and maybe even making things up although not intentionally... Word come back they said I had damage from the spinal tap and have disks out of place.

I then got Strep which turned to worse because they kept refusing a test for it for 2 weeks so had to be in to get on steroids to keep everything open.

Then Mono which went undiagnosed for 3 weeks due to the same reasons. I had to have codines and others meds together so when I got home had really bad reaction and things started spinning and I started choking on my own saliva :(

Then Mono/Flu at same time that put me back in hospital like the other illnesses did which there went undiangosed once again because of the doctors seeing my Autism label and saying it was psychiatric.

Now they are looking at the vestibular/inner ear and possible migraines (trying to see what is all causing my dizziness and lightheadedness because I can't always stand up for very long or walk very far w/out thinking I'm going to pass out)

They are also trying to figure out my hormones and hotflashes... We are in process of switching to new doctor because the other one was really really mean and about 6 other doctors - the only other one's we've seen, completely disagree w/in a minute of the diagnosis she gave me (polycistic ovarian syndrome) and disagree greatly w/ the pill she put me on (Avian) which I just stopped taking 2 nights ago.

Mayo Clinic denied me 2 times but we found out our doctor was not putting all the problems down... I feel so confused and really upset by all of this. I haven't left the house in 16 months except to doctors and hospitals, etc. for tests. Occasionally when ok I've gone to Starbucks a couple times with my dog.

We just got a few answers that should help answer some questions about why I'm having some of this dizziness/lightheadedness and severe ear pain (maybe even explain a little of the hotflashes)... (This has been 'put under the rug' for the last 15 1/2 months because it was all psychiatric and Autistic in nature according to the doctors)
Results were:
1. Migraines (they are sure and think they are vestibular migraines)
2. Eustachian tubes really plugged up so might have more test for that see what to do about it and see everything.
3. My eye beats were bad for different positison and in dark so they say that is def. a vestibular problem and possible balance disorder as well.
I'm supposed to be starting some therapy and still scared about all of it...
at least the people they decided to work over time like 2 hours because they really cared about me, finally doctors who are listening, etc. I just hope to God its not too late.

Since I'm a christian, I feel like God just has to have a good ending to all this after all the He has let happen for some reason, especially w/ my site and my book on Autism and Medical Personall, along with the tons of other topics in it as well (aside from my website), etc... but then my faith gets weary and I see other people get sick and God doesn't always save them, but then I get these signs that are impossible to be just a coincidence... it goes back and forth :(
I really need lots and lots of prayers, I of course especially want them for healing and comfort.
So sorry for the long page but in order to say what is wrong its impossible to just say it... And its also really hard for me, especially being on the Autism Spectrum how to say things short, so I really apologize this was soooo long.
Thanks for listening and caring,
Kris


KED
KED
Latest page update: made by KED , Jul 20 2009, 5:10 PM EDT (about this update About This Update KED Edited by KED

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Keyword tags: and Autism being Me sick sickness
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Julishere Prayers and wishes 7 Jun 9 2008, 9:55 PM EDT by KED
Thread started: Jan 15 2008, 11:51 PM EST  Watch
Dear Kris, I am sorry you had to go through all of that to get the help you needed. I really hope you have found the right doctors. The others should be ashamed of themselves. I didnt think it was a long story and no need ever to apologise for explaining how you feel. I will pray for you and hope God is working on you right now and let you be healthy and enjoy life. All my prayers and get well wishes to you!- Love, Julie
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