Meet The Contributors

Mandy ~ I am a stay at home mom who has been on a medical roller coaster ride going from doctor to doctor trying to figure out what is wrong with me. All of the doctors agreed that there is something medically wrong with me, they just don't know what... Basically, just about every time that I go to the doctor, I wind up with a new diagnosis. It is very frustrating. I hope that some of these links will maybe help you or lead you in the right direction.

Ferd ~ I have had the honor and pleasure of practicing Internal Medicine for over 25 years. I am now enjoying sharing my thoughts and experience in the blogosphere in a number of ways. I am grateful to Mandy for including me on her excellent blog, Texas Medical Freak!

Tuesday, June 24, 2008

Long Vacation...

I have not really been on vacation, just sick and taking care of my autistic child. Quite a bit has happened since my last post. It started out with that terrible cold that was going around in mid March, my youngest and I both had it for over a week. When we finally got over that, we took a trip to see my dad and our autistic son. We had a good visit but we were still at the end of our colds.

At the end of March, I finally got a hearing for my Social Security. I applied about two years ago; got denied, hired a local Social Security Disability law firm, got denied again and then finally got the hearing with the judge. At the hearing office I had to go through security with the security guard, it was a bit like going through security at the airport. Had I known this, I would have carried my usual airport things; a tiny wallet (with my ID, bank card and insurance card), then wore a pair of Crocs. But nooo…I had a purse full of all kinds of stuff. I had to dump everything out and let them go through it, then get wanded. When we finally got to the hearing room there was the judge, court reporter, a job expert and (via the phone) the social security doctor. First the judge asked me a lot of questions about how I felt and what was wrong with me and then about my various careers. After explaining to him what I had done at my past few jobs that spanned back about 15 years, he told the “job expert” that she was no longer needed. Then came the ss doctor on the phone…first he didn’t think that my Chronic Kidney Disease is as bad as it is, then came the Chronic Fatigue Syndrome…he tried to say that it was not a “text book case” of CFS (my attorney came back with asking the doctor if there was anywhere in any of my doctor’s reports that said that I was not chronically fatigued? The ss doctor said “no”) next was the Fibromyalgia; somehow my pressure point test did not wind up in any of the reports? When the hearing finally ended, I left with no answer for my SSDI (no yes, but no “no” either)

The day after the hearing I went to see a Rhumotolist, to get diagnosed by an “expert” for the Fibro. I have been a little reluctant to see a Rhumotolist, mainly because of all of my goofy medication allergies. But, to my surprise he was really good! Due to my allergies and CKD there are a lot of pain medications that I am not able to take, he came up with Ultram which is aspirin based and does not have the compound that is in Darvocet, Percodan and most others that end in “cet”. He agreed that I do have Fibro and hopefully…this will help in my SS case.

Then finally it is the end of the school year, yea!!! My autistic son flew out to stay just a little over a month, he has been doing this since my mother passed away. With my mother gone, my dad doesn’t always have someone to watch him while he is working. Even though he is 15 and high functioning, you cannot leave him by himself. This summer, we had a really hard time with him. I think that his Psychiatrist is on the “conservative” side and does not have him medicated enough. Most of the time that he was here this time, he did not go to sleep until after 2:00 if he did sleep at all. He has always had a problem with sleeping, before we started him on medication he would “maybe” sleep for about a hour a day after the age of three and even before that he rarely took naps. It would not be so bad if he would stay in his room but, he wanders around (even outside sometimes) and gets into EVERYTHING! So, I had to say up with him and not take my evening medications most of the time he was here. By the time he left to go home, I was completely exhausted.
About getting into “EVERYTHING”, I do mean everything. He got into my husband’s clothes (he wears an adult XL and my husband wears an adult M, not sure why he does this? He even gets into my clothes???) he found my daughters artwork that she did in high school that has been missing since 2003. He likes to draw and has tons of his own paper, colored pencils and markers but, he got into and used up my brand new set of Prisma color markers. Everyone in the house’s stuff is free-reign but, he will have a fit if you touch his things. We are just about at our wits end, we have tried everything that we can think of to teach him that; you have to ask to use someone else’s things and you don’t steal. It is not that he does not have the ability to learn this but, it is like he is a clepto maniac. The things that he takes, he does not need like with the markers he had his own. Please post any suggestions or things that have worked for you if you have dealt with this or the sleep problem.


SueEllen Cowan said...

Oh Mandy you have really been through the wringer again, haven't you? I have a granddaughter who is a high functioning autistic teen and it is all I can do to look after her for a short visit. The fibromyalgia is debilitating on its own and when you add in the rest of your health issues, I can not believe they won't give you the SS without all this fuss. You are in my thoughts and hav my best wishes for a successful outcome.

Mandy said...

Sue ~
Yes, is sure feel like it.

Autism is terrible and I can't even imagine being a teenager with autism. But, this does not make it any easier dealing with.

My attorney told me that the main reason that I have been turned down so many times is dues to my "medical freakiness" if I only had one or two issues more than likely I would already have it. Hopefully it will not be to much longer. The money would really help.

Daisy said...

I hope the Social Security administration will approve you soon so you don't have to keep going through all of that!

Mandy said...

Daisy ~ Thank you, I do too. I have really missed your lizard adventures, they really make my day. I will have to catch up on all of your back issues =)

=^./.^= M

Susie said...

Wow Mandy, you certainly have had a rough go lately. I wondered where your posts were! Thanks for stopping in by me today and saying hi!

My mother has a chronic kidney disease as well, called Glomerulo nephritis she almost passed 5 years ago from being mis-diagnosed! She went through Chemo and is on a drug called Cellcept, it was quite an education.

Best to you sweetie! I'll keep you in my thoughts!

Mandy said...

Susie ~ Well, wait until tomorrow there is more. But I save the best for my next "Freaky Friday" tomorrow.

Sorry to hear about your mother, CKD is no fun at all.


medical assistant said...

hope you have a good time during vacations.

My Autism Insights said...

My son has some trouble winding down sometimes and I find that the meds he's on has made that worse (I'm going to take him off). It's possible your son's meds have stopped working? That happens sometimes. Anyway, I use a mexican blanket to give my son some weight over him and that helps calm his nerves enough to sleep. I just run 2 fans on low in his room so he doesn't get overheated. As for the swiping things, it sounds like something he can't control. Would having something in his hands help? My son is only 7 so I'm not sure how things change in the teenage years. I wish you luck!!

Mandy said...

My Autism Insights ~ I am not sure if it is the trouble winding down or not? He has always had trouble sleeping even as an infant. I would have to put him in his swing (but not make it swing, he just hated the swing) and then turn on the vacuum. He has one of those really soft Vellux blankets for when he is here. He has always had a thing for things that are really soft. As far as the medication goes, I think that the combination is a good fit with him but doses need to be increased. I do know what you mean about stopping working, we have been through that from time to time. His taking things has been going on since he was little, this is not a new thing. I wish that I could just chalk it up to the teenage years but, I can't. Thank you for stopping by and the best of luck with you son too =) being the parent of an autistic child is not the easiest job it the world.