Tuesday, June 1, 2010

Brittany Murphy, Dysautonomia, Her Brother

Brittany Murphy, Dysautonomia, Her Brother


Anonymous said...

Wow. Very interesting viewing. Do you think this might possibly be part of what you are suffering with? Also- is this the first you've heard much about it? If so- maybe now with the correct words you can get the stupid ass Docs to pay attention to what you're saying.

I myself was a big fan of Brittany Murphy. She was so beautiful and talanted and funny. it was incredibly sad when she died.

There is this Gay Journalist- or at least he calls himself one, Dan Savage. He's often been on Bill Maher and Rachel Maddow and such if the name sounds familiar.

He writes for a blog in Seattle, among other stuff he may do.. i'm not entirely sure.
Anyway- in his blog, less than 24 hours after her death.. he referred to her as "the skinny dead bitch". This is back when we weren't sure yet what had killed her.

Well.. lemme tell you what. Both Gary and i ripped him a new one when he blogged that. I called him a "heartless prick" for being so nasty about a beatiful girl who was barely cold and not even in the ground yet. Gary wrote him much the same. And actually- they kind of got into a bit of a tiff on his blog because of it and we STILL call him on it to this day LOL. He often plays Devil's Advocate but that was just wrong. We told him it is a shame he is one of the few "Out" journalists who had a following because he certainly did not represent what i think of the gay community. He is a total asshole. Many of the other bloggers had some choice words for him as well. So if you see this dickhead on tv and wonder why you don't like him- now ya' know.

Anyhow- Sorry, enough on the Dan Savage rant. That just really got to me. RIP Brittany.

Perhaps knowing about Dysautonomia will make you a bit more armed and ready, so to speak- when you go to another Doc. I sure hope so. And i myself certainly learned something today- so thanks for posting that.
Apologies for the length of my post. I get wordy sometimes as you know.

Take care and be well, my friend.

Brian Underwood said...

Yea this is what I have been trying to get any doctor here for about 10 months to check me for. That is why I keep posting stuff about POTS because POTS is a Dysautonomia. There are several different kinds of Dysautonomia's but since my heart rate increases to high rates while standing and yet my blood pressure isn't dropping (unless I get up too fast) then it would match POTS. That and there hasn't been a single symptom of POTS I haven't had except one and that one is rare to have even in POTS people. :)

People say horrible things to people on the internet. I liked Brittany Murphy too.

Anonymous said...

Yes, sorry. You had mentioned Dysautonomia before. My mistake. DUH! lol

See- that is why i make Gary go to every single one of my Dr. apppt.'s with me- because sometimes the jargon goes in one brain cell of mine and out another. I need him there to be my ears.
Anyway- my bad. Apologies.

Brian Underwood said...

Oh no, its ok, most people have never heard of POTS or Dysautonomia, let alone them being one in the same haha.


Marie said...

Did you hear his advice to push back at it. Walk a black if you can only walk a block. He said the worst thing you can do is think that you just have to rest. :) Had a feeling you may not have heard that part. :)

Brian Underwood said...

Marie, I own a treadmill and do it almost everyday. Some days I can't because some days I can hardly stand. Why would you think I at this point wouldn't have known that let alone heard what he said?

Anonymous said...

Marie- why the fuck do you not think he would have heard that part? Are you insane? You read this blog.. i've seen your snide comments before.

You know how much time, work and effort Brian has put into researching and informing others. Why the hell does almost every one of your posts to Brian insist on being snarky? Does it make you feel better to make him feel stupid or inadiquate or uninformed or lazy?

This boy needs more positive re-enforcement and understanding, not some naggy, snarky, nasty comments to make him feel badly about his life.

SHAME on you lady. Begone- before someone drops a house on you as well.

Bri- why even post her stuff, really. She pises me off too. Sorry Marie. Epic fail at being a decent human being.

Marie said...

Wow. You guys took what I said completely the wrong way!!! I care about Brian very much. I understand what he is going through. But I am also not going to let him sit around and feel sorry for himself even when he does not feel well. Just like my husband encourages and pushes me. If he let me I would just never leave the house because of my agoraphobia. So I was trying to be encouraging. You know..saying...see....this guy gets it and he found that he has to push himself so he can enjoy life. And I get mad at Joe sometimes when he encourages me. I say..don't you think I want to go out..and he says...well then do it. And i do..and feel better and then I thank him.

And Brian I just wanted to make sure you were not just focusing on the bad parts of that video....him being sick.. Brittney dying. You..like me...tend to think the worst..and focus on the worse case scenario.

Brian Underwood said...

I wasn't focused on the neg. of the video. A lot of what I post here video wise (other than my own videos) is for education of others. Most people (including doctors) have no idea what a Dysautonomia is. (If it turned out I don't the education is still important) [If I don't I am in serious trouble because I am very sick I don't even let on how bad it gets, not even on the blog]

I use my blog as a dumping ground for the negative parts of my life because there is no one in real life to tell, so it is away to vent. Also, so many people who search what is happening to them can find they are not alone. Like with the benzo withdrawal. Many are find, in my case and many others it is a nightmare to stop that class of drugs.

I was lucky enough to find a forum of people who dealt with it. I made the video for others to know they aren't crazy it does happen and it is the most awful experience I ever had to go through. Now daily (everyday)I get emails from new people suffering the way I was and they are scared. They are thankful they found my video or blog. Some were on the verge of suicide. I am able to direct them to the same forum/forums that saved me.

As far as what I have going on now I will never know if it was caused by Xanax, the single dose of Paxil I took that day when I fainted hours later and my heart rate went up and have had an issue since or if this was my "mystery anxiety" all along and only the meds set it off in the worst way since meds can effect POTS in a negative way. Also a form of POTS can be progressive with age.

I have made peace with never being able to know why it is all happening. All I know is it is and finding a knowledgeable doctor, without family support, no real life friends, and other issues makes it that much harder. It is scary to do this alone, very scary.

It is very hard to get to a different state or to the other side of my own state when often times I can't shower because even mild warm water raises my heart rate to 140-160. For the summer I might be trapped till it cools back down till I can get that far away.

I think I deal well with being this sick and alone. It is what it is. Each day I just have to get up and do what I do. You would think I would be depressed and back in Dec. I was. I cried a lot because the old me was gone. Maybe I was just morning the loss of myself, the old me. It was needed. Either way now whatever is wrong just is. I am here and have to make choices for myself that people around me, online or otherwise may not understand..I have my reasons. My gut instinct has helped get me this far and I trust myself more now than ever.

I can understand why people might think I am trapped in pity. Please understand I am going to have good days and bad days. I write about the bad often, it gets it out and it helps others suffering to feel sane.

I am long past caring if people think I am crazy (not that I am saying you do just in general). I know what has happened, I know the truth. I also know how sick I am. I honestly do not think unless someone is/has gone through it they can understand. Sort of like agoraphobia, people just dismiss it, that is real too, causes real suffering and loss.

I have been in contact with so many people and I wish I could tell their stories, but because they are in the military or work in the pharmaceutical industry to protect what they have told me or sent me I can't. It is amazing what comes out of the woodwork when others are suffering and find you.

Anyway don't worry about me dwelling on the negative. I am busy trying to map out a plan for when I can go to a doc somewhere in the country and busy working on a cure should I have this illness (or whatever illness) I don't accept the words "not curable only treatable." Everything is curable, you just have to try what hasn't been tried yet, stay open minded and keep breathing. ;-)

Robin said...

Brian, as I said the last time I commented... I completely understand what you're going through. According to doctors, mine included, the treatment for POTS is medications and a progressively increasing exercise routine. The problem is, until you have been diagnosed and can get medications, it's going to be extremely difficult for you to exercise. I, even with medications, still struggle with walking up one flight of stairs.

I can't imagine how hard it must be to be dealing with this without any support. I am lucky in that I have multiple family members, primarily my husband and parents, who are there to help out. In fact, if it wasn't for their support and help, I wouldn't have made it up to Mayo to get the help I need.

Prior to go to going to Mayo, however, my cardiologist diagnosed me with POTS. However, he still thought something else was wrong (still does, but that's a whole other story). If there's any way for you to get in with a cardiologist nearby, that will be a huge first step. I know I recommended in my previous comment some POTS/dysautonomia specialists, but if you can't easily travel then you should try to still find someone nearby.

I have been tossing the idea around for the last couple of months to start a blog myself. I finally decided to do so. Come check it out.
As I said before, feel free to email me and/or comment back if you have any questions.

Anonymous said...

Marie, please understand that i am very protective of the people i care for. And you do come off a bit snarky at times- only you put a smiley face emoticon after it "so it's all ok". It is sort of like making a huge insulting remark to someone and then saying "Just kidding".

That said- i take back what i said about you not being a decent human being. I don't know the first thing about you and vice versa.
Everything else i posted, i stand behind 100 percent.

Brian Underwood said...

Hey Robin. :-) I have seen 14 doctors in my area including 2 cardiologists lol However both cardio's never heard of POTS. One told me I had a fear of standing. That is why for now I just stopped going local. Plus when they get my medical reports from the past they see I use to take Xanax or Paxil and from that point on I am just blown off as some neurotic.

I joined the DINET forum by the way, I think I found it through the link you gave me about the doctors. Thank you. :-)

Robin said...

Well, the cardiologists and the other docs you're seeing are idiots. I am lucky in that some of the docs I saw already know me from working with me. (I am an ER nurse.) The cardiologist I had knows me fairly well and he is also a great doctor. He was a wonderful advocate for me. Prior to seeing him I had a lot of doctors think I was nutty as well.
A combination of things helped me get my diagnosis faster.. my medical knowledge, the few connections I have through work, and being extremely assertive/pushy. So the best thing I can tell you, is find a doctor who knows something about POTS, and start/continue being pushy.

Marie said...

So agree with so many docs being clueless. Just like with my TSH hormone level. The "normal" range on most lab results for up to 5.5 but that has been updated to 3. Most docs still consider anything below 5 ok. It is not. Thank goodness I found my doc and he was able to say..hey...you know how you feel like crap...you see this number....that is why you feel like crap. He says most people feel like crap if it is higher than 1.5.

Brian Underwood said...

Hmmm my TSH was 2.5 in the ER what was yours?

Anonymous said...

Brian - I'm sorry to hear about your struggles. I, myself, saw 13 doctors before i had a diagnosis. I dont know how far toledo, ohio is for you, but it would be worth the trip. Dr. Blair Grubb, at the University of Toledo, is like the guru of POTS. He is not only extremely knowledgable about POTS but probably the most compassionate doctor in the universe. If the wait is long to get in (when i called it was 7 months) ask to make an appointment with his assistant. He will change your life....guaranteed!! Good luck to you!!