MONDAY'S RANT~

"Rainy days and Mondays always get me down".....so lets rant all day Monday-


post ur rant and get it out of ur system and enjoy the rest of the week!!

[soccero]

I hate when people ask how u r doing cause even though they r being nice they don't want to hear how horrible u feel so u lie and say  that u r feeling ok and they make light of the situation. For example the follow up the 1st question with  then why arnt u in school. It's never ending
Molly

[selmaS]

Hi Molly...I understand completely.......I get that all the time too, but Y don't u have a job.....it goes round and round.....and I feel u really find who ur real friends r when u r in this situation......u can tell.

[selmaS]

I hate PND !!!! this is driving me insane....................neone else dealing with this right now?

[shanmomof3]

Wow it must be bad! I've never heard you say you Have anything! Sorry your having such a hard time with it selma! ((Hugs)) Shannon

[shanmomof3]

oops! It was suppose to say Hate

[selmaS]

...I keep gaging and coughing and my throat feels like it is blocked...I am not sleeping....ugh...I see my PCP tomorrow so I will find out what is going on.

Thanks Shannon....

[shanmomof3]

Ok now i'm gonna rant! I HATE drop attacks!!! I stood up took one step and my leg fell out from under me. UUGGHHH!!!

[laratterman]

Well... tomorrow is my birthday.  I feel blessed to finally be seeing a Chiari doc (Dr. Batzdorf at UCLA Med Ctr).  The day of my appointment, I got a call in the morning to tell me that my mammogram came back with a questionable spot.  I go on Thursday to have it rechecked.  In the meantime though, I am so freaked out!  I don't know what I'll do if it shows something definite.  Do I go back to Indiana and deal with it?  Deal with it here and add that stress to my wonderful sister and her family?  ... then, of course, fly BACK out to CA to continue with Dr. B...  I hate having all these messed up health issues!!!!   I'm tired of the stress and burden I put on everyone!  I am just TIRED of being tired!

[laratterman]

Selma and Shannon, I didn't mean to ignore your posts.  I don't have PND, so I can't imagine what you're dealing with (I read about it), Selma... how frighteningly awful!  I am so sorry!  The drop attacks, well, knock on wood, but I haven't had one for a while!  I was having them very regularly for a while, but then they subsided - and for that I thank God!  But for you, I know how scarey they can be for you and everyone who loves you.  

You will both remain in my prayers!

Blessings!

Lori

[selmaS]

bumping up so I don't forget...tomorrow is our day to rant...who ever rants first basically picks the topic for this MONDAY : )

[rod44]

How do you convey in words the pain you are feeling to a doctor who can not feel it them selves, if you overdo it they think you are looking for a fix.....everyone experiences pain differently and have different thresholds. They ask you to rate your pain between 1 and 10 with 10 being severe. My idea of severe may be someone else's idea of bearable.....it dose not sound very sientific to me....hummmmm food for thought....

Ray

[selmaS]

Ray,

U struck a cord with my thoughts as well.....I was thinking this a few days back...wondering the same thing....I guess they only want to know how it affects u as to how the same pain might affect someone else....bcuz it is ur comfort they r trying to  achive....at least that is what I hope  : )

[shanmomof3]

I have often wondered this too because if i tell you my pain is a 10 then i'm ready to go to the hospital!!! But on a daily basis my pain stays around a 7 or 8 and A very good day for me is a 4 or 5. However, because most of us have dealt with the pain for so long our 6 would be someone else's 10! On a more personal note.... Sitting in a hospital all day STINKS! And does not do good things for my chiari :(

[ChiariWolf]

That my friend is a very sore subject. For scientific people to use such an unscientific methodology is ludicrous! Most times they don't like my answer to that question. Here you are trying your best to ignore the pain so you won't think about it and here they are telling you in their sweetest voice "Oh, please focus on your pain so you can tell me how bad it is right now." Yeah.... me no go there... pass the chocolate someone

Wolf  hummm.... who ate all my Klondike bars!!!!

[selmaS]

I 'll take some dark chocolate if u r handing it out... : P yum

[rod44]

Did I hear CHOCOLATE I would love some....

[shanmomof3]

Dang! I missed the chocolate party :( did you save me some wolf? Or did the leprachaun it eat all? LOL

[rod44]

Hey the leprachaun only eats greens lol...... how would you rate the chocolate between 1 & 10, 10 being most yummy?

[shanmomof3]

LMAO! It depends on the chocolate and whether it has anything in it or not (creams, flavors, nuts) and is it milk chocolate or dark or white - my favorite! Ya know there's all different levels of chocolate just like pain except we like chocolate! Lol

[ChiariWolf]

I must appologize..... You are my friends but ... hey even friendship has it's limits! Chocolate is Chocolate.... Here we are brain damaged folk and we all know that chocolate has been proven to help your brain produce serotonin in the brain. You see since I was very young my father has said I don't have a brain in my head and well so you see I must eat all the chocolate.....                         awww rats you caught me Yes I was selfish and ate it all by myself! By the way Ray, 1 to 10 Chocolate has to be about a................................................................................... lets say 10,000,000,000 yes that is about right!

Wolf

[selmaS]

Wollf...I am with u on where chocolate lies 10,000,000,000 seems about right...lol.....

And Shannon...it has to be DARK !!!! it is the best and good for u too : )

well getting the rant going early for our members in different time zones : )

[ChiariWolf]

Hummm.... this is sounding not so good for you Selma my dear! You sound too much like me and well... my dad still says I'm crazy. Yeah, that may not be a good thing. But hey the chocolate is a must have, no money for poultry, beef, pork well sorry you'll just have to suffer as chocolate comes first!

Make one exception, I've been waking up with really bad HA for the last several days. Wife gives me coffee and that kind of helps. But today stopped at the gas station and my son got me one of these new Mountian Dews -Volt I think it was- and wow my HA went from effecting my eyesight to nearly gone in less than an hour. Don't know if was the Volt or not but I'm going to get some more and keep it around. Chocolate has caffeine in it as well you know... :-)


Wolf

[selmaS]

Wolf...I know caffeine can affect HA's and most times drs will say avoid the affine, but I am glad to see it is helping urs.....in fact with CSF leaks drinking plenty of H20 and caffeine is the best way along with lying flat to get the leak to heal on it's own......

And trust me Wolf....I have my secret stash of dark chocolate right next to my recliner...lol.....so no worries for me not getting my fix...plus I made a chocolate cake the other day with the new dark chocolate cocoa....yummmmmmm

[shanmomof3]

Now wolf you have to learn to share lol even if its just a little bit ;) Coffee helps mine as well. It does not make them go away but what i have noticed is if i dont have coffee in the mornin then i get huge HAs before lunch that do not go away all day!

[rod44]

o yeah coffee is good, the urologist has said I need to cut down but hey we need some comfort


I thought we were on a rant here? lol
Doctors should eat more chocolate then they may not be so up tight....

[Spaceystac]

I love coffee!!! But if I don't have it I get a headache :( I also think the dark chocolate Is awesome!  
Does anyone In this forum know of or have a Tarlov cyst? Its on my mri reading and I dont know if it correlates with the syrinx? Sorry to change the topic, lets just pretend im ranting,   rant rant rant rant

[rod44]

Hi Tarlov cyst are nerve root cysts where the nerves leave the cord, a syrinx is in the center of the cord......

Do you have any bladder problems?

Ray

[ChiariWolf]

Agreed Ray! Some doctors need to loosen up on them there underpants so they can see reality. One too many of them seem to think we owe them something rather than us being their customer.

Actually, my Dr advised pain for the HA. Who knows, we just cope the best we can and what we can't well we eat some chocolate so as not to think about it. :-)

Wolf

[shanmomof3]

Yep chocolate makes it all better! But wolf you still gotta learn to share lol

[ChiariWolf]

...urrrrrrrrrrr............... but you forget I grew up in the era of Wendy's commercials. Yes, that's it, my impressionable young mind took to heart the saying "I ate the whole thing" and well you see it made me belive that this is the correct way to do things. Once you start you must finish the whole thing otherwise you will be chased down by an evil 'wendy' hurricane. So subconciously I'm forced to eat all the chocolate once I start. Now not to worry this severe physco problem doesn't not persist with any foods other than chocolate, coconut cream pie or fish. So sorry but I just can't help it...

hmmmmm .... I sense you're not beliving me. Well just remember to remember that even if you where to try and untrain me it won't last long as I have Chiari and seem to have short term memory loss along with it. So any new tricks you train this dog 'like not eating all the chocolate' they just won't stick. Not his fault though as he has chiari.  [I never knew chiari would come in so handy]

Wolf

[shanmomof3]

LMAO! Ok, ok wolf you can keep all of YOUR chocolate. But that also means you'll forget i told you that! Lol

[rod44]

A new survey has revealed that 9 out of 10 people like Chocolate. The tenth lies.

[selmaS]

LOL...and many that claim to only like milk chocolate ...when asked what morsels they use when making chocolate chip cookies all say semi sweet....umm, that is dark chocolate people...lol......we will win u over......

[selmaS]

hmmmmmmmmm what can we rant about today?

[shanmomof3]

Well personally I'm sick and tired of having to suffer just for doing ANYTHING!! A trip to walmart will leave me in pain for 2 hours and an evening out with friends will usually put me in the bed for 2 days! I'm SO tired of it! And I'm tired of being cold ALL THE TIME, i CAN NOT get warm. I feel like i dont have a purpose any more :( I cant keep my house clean the way i want, if I laugh and play with my kids i end up in pain, and most of my friends and family think i'm crazy bc they dont understand this awful stuff i live with. I'm just SICK AND TIRED OF CHIARI!!!                Ok, i'm through ranting now ;) Shannon

[selmaS]

Shannon it may not end with surgery, and I am not trying to add to ur burdens...just be advised the surgery is to stop it from progressing further...some get  a lot of relief and many others do not.

Related conditions to chiari are the main reason for those that have not felt the relief.......u will find a way to adapt so u can do what u need to and have a way to also do what u want.....

but, I know that the surgery does help and I just want u to know not to expect miracles....just hope to slow it down.

[shanmomof3]

Oh I know selma, I realize this is something I have to live and deal with even if the surgery helps the disease will still be there.  I was just having a "poor pitiful me" and "why did this happen to me" morning. I've had coffee and chocolate so i'm feeling better now ;) lol Just needed to rant and get it out of my system!

[selmaS]

well u came to the right place...lol....

[*Stormy*]

ok here's my rant... I am tired of people calling and hearing my voice and saying "oh you sound better!!" Really how do they know I am better just by my voice??

I keep saying that yes, I am healing from the surgery but that doesn't mean that everything else has gone away. I still have headaches, neck pain, vision problems not to mention I still walk like I'm a drunk (a bit more jerky though!) Sometimes I get so frustrated...

Oh and Shanmomof3, I am with you on always being cold and never cleaning the house the way I want (my husband tries but you know how that goes...) Plus, my kids decided that now is a good time to have the flu so I am left with many a puked on sheet.

Ok I'm done, thanks for the outlet :)

[zygy]

Thanks Shannon, you sum it up well!!!  I am the angriest about having the most head pain with laughter!  I have a good life and I laugh a lot... now I cry when I laugh because I get so frustrated and mad that something so good can feel so bad.  Selma- I really appreciate you being so honest about how surgery may or may not work, some days when you are frustrated it could be really easy to make the decision to just do it!  It needs to be well thought out and not just a choice you make because of a bad day!! I am going to also add another frustration along this line.... they say that you have surgery to prevent things from getting worse but they will not do the surgery until things are horrible???  This does not compute for me!  It confuses me greatly!  

[selmaS]

I agree with u..most NS do wait too long to offer surgery as an option and then we r stuck not seeing much of a benefit.....and I am glad u understood my caution not to make the decision in haste.......it is easy to do that and then expect to be 100% better...and at fist u may feel that way.....most times that can be the meds.....

I feel like u all do and I find that no matter how cold I get, there is nothing I can do...my DH thinks I am nutz bcuz I freeze in the middle of summer...so winter is  not good at all.......
and when I am cold I hurt.....

I also am getting the HA's back when I laugh and cough..but what ticks me is if I laugh I begin to gag and cough,.....which really feels like I am right back where I started.....

But as I said to Shannon, I do have other chiari related issues that r most likely responsible and I pray I get answers on all of this soon too...

My lastest old issue that just started again is the ever annoying eye twitching...ugh

[Spaceystac]

My house is 60 degrees right now and thats not in my basement/bedroom. I am curled up in bed because its so cold and it makes my whole body tense up : ( my gas furnace isnt working right and  I have told my landlord who is also my room mate and he hasnt done anything yet cuz today is the first day it has gotten this cold in here. Maybe now he will do something.
   So I said to my boyfriend, we need to start a fire so that it doesnt get any colder in here, can you please go get some wood so we can get a fire going. I asked him and reminded him multiple times and he just kept procrastinating. I feel like I am the only person that is responsible in my household, and that I cant rely on anyone to do the things that need to be done.  I ended up getting the wood,  who knows when he would have, and i felt it shouldnt wait anymore because it is freezing. Lately Ive just felt like leaving because no one understands or seems to even care.  They just act like every thing is normal, and expect me to act normal as well.  I hate askin for help, and I am the type of person where If I ask for something to be done, and it doesnt get done, I do it myself. Its just easier that way. So now I am just having to deal with all these changes by my self it seems,and it is very frustrating. I am going to leave my house for a few, my car heater works so I can warm up a little!

[selmaS]

Hey Stacy keep warm....sorry u have to deal with all that and I know how frustrating it is to get family to understand what is going on, but it is just as hard or harder to get drs that do...so don't be too hard on them......

[shanmomof3]

Stacy, i'm sorry you have to deal with that too, but i TRULY understand! My husband doesn't get it yet and doesnt understand why i cant do the things i usually do. Also, i was waiting for selma (mom) to fuss at you for moving the wood but she didn't lol I know you felt you had to, but maybe you could pay a neighbor kid a few dollars to do that next time. Its really not good for you to pick up anything heavy! Hope you warm up soon! ((HUGS)) Shannon

[Spaceystac]

Well I am feeling a lot better. I got a call from DSHS and they have a phone interview for insurance and assistance setup for Thursday.  I went to my doctors office and signed a release of my med records to me and Gregory Folts's office, the only specialist in Washington. And I went and got a CD of a bunch of my images form Inland Imaging. And just so you know Shannon I was very careful with the wood and only grabbed a couple small pieces, just enough to get it started. When I got home, I found that my boyfriend had been keeping the fire stoked, and cleaned up the living room that has been suffering since Thanksgiving.  I sure he will realize soon how much I really do, he will come around. We have been together for 7 years so he better!  Thank you for having Monday's Rant, it really helps!!!

[ChiariWolf]

Wow!!!! Funny how so many of your feelings mimic the ones that I fight off every day. Esspecially the "I used to do that no problem" only to try doing something and find out it just isn't possible anymore. And the car ride, oh yeah, that really stinks! Took my son about 20 miles away to apply for a job, came straight back except for a short stop at the grocery store and I'm done. To tired to even check email let alone anything else. Of course we can't sleep oh no that would be too good.... yeah guess we're just begining to realize what this lousy thing called Chiari really is all about.

Personally, I think that perhaps the hardest thing to deal with is the changes in our thoughts. Many chiari symptoms could be coped with via mind over self per say. But the way that we perceive others actions or attitudes towards us can be ever so far off. Many times others just don't realize what Chiari does to someone, how limiting it really is at times. Or for that matter understand how quick or easily some of these limiting symptoms can be triggered. One minute you may be just fine to walk through a store, but there will be times when you can't make it out. Or going to a funeral as I just did. Going in I felt fine by the time the funeral started I was done! The noise of people talking that I used to love so much is now one my biggest tortures, the ringing in my ears from that noise just multiplys and leaves me helpless at times. ......Yeah, many of us could go on about how we wish others, especially those close to us understood, but then do you really wish that??? At times maybe, but ultimately I don't! NO WAY- as in order for others to understand it would mean that they too have Chiari.......   No, there is not a soul alive or dead that I'd wish that on even for a moment of their lives.

So we look at the bright side. Well what is that bright side? Look down dear 'grasshopper'... the grass is still under your feet!!! Better than looking at the roots, eh?

Wolf

[selmaS]

Wolf...u always put things into perspective...and I can always agree with ur views...thanks for sharing : )

"selma"

[shanmomof3]

Yep wolf got it right! No i wouldn't wish this on anyone either. Would love for some of them (especially drs) to be in our shoes for ONE DAY, just so they could understand or at least empathise (sp?) but would never want them to have to "have chiari" Very well put wolf. Thank you! Now hand over the chocolate!!! Lol

[selmaS]

Posting early for our members in different time zones...first one to post picks the rant
topic !!

[*Stormy*]

Looks like that's me... I am leaning toward ranting about how people really don't understand..should be an easy one for everyone!!

Spent 1hr at the hair salon on Sat. because I really couldn't avoid it anymore (people were starting to think my boys were girls). They had a really uncomfortable seat that had no head support so by the time they were done I had a headache and was feeling sick. I still had to take my son to an activity so when I got home I just wanted to dive into bed... I hate it having to be that way, I feel like I'm letting my kids down and I really don't think my husband gets it...he thinks he deserves a nap too. Someone has to get out and do something with the kids and I'm having a really hard time trying to do it all.

Then, there is the people that think they can cure you by the power of positive thinking....Don't get me wrong, I think positive thinking is really important but not when they act like they understand when really they can't. I was at a b-day party the next day and I'd been there 2hrs and was done, I just wanted to get home. I'm asked how I am doing and I reply honestly that some things are better, some aren't, that the surgery's not a cure etc. Next thing I know I am getting statements such as "you're here and that's good" (translation- I'm not dead), and you're walking (not paralyzed) and you look so good!! Meanwhile, I am trying to scout out the quickest exit and hope to make it there before I pass out.. I know it is well meaning but it is still hard to sit there and smile and nod...

Anyway, now I've got that out...here's to positive thinking for the rest of the week!

Then

[selmaS]

I know what u mean.....so many were asking how r u right after surgery, but then no one seems to care once u r a few months out....well it didn't all go away...this takes time.....and I can not always do things...I think we need to ask people to eat something really fast like ice cream, then hang upside down  and spin around and then say ok....do this math problem or lets go shopping...hmmmmmm how many will be up for it??? I wonder....cuz sometimes it feels like I must have done something like that to feel like this : )

[*Stormy*]

That's so funny!! What a great way to put it. That is what I am finding, now that it has been five weeks the only answer people are really looking for is "oh I feel great." It's kinda like if you don't want the real answer don't ask!! On the bright side, I saw some co-workers today (had to grocery shop) and they were great and totally understood how it was so that made me feel better. Funny though, they've had other problems themselves so I think that's why they got it..

[selmaS]

I am surprised u r doing grocery shopping....I hope u had help to carry the bags....wow I am further in time than u, and so far behind u already....

So true, if they don't want the answer then they shouldn't ask.....and I do have plenty that don't....lol....

Just pace ur self......

[*Stormy*]

Don't feel too bad, I did have some help, my hubby is self employed and had the day off so he came to carry all the bags... Just the walking around takes a toll on my back, neck and legs which is why I decided to try the muscle relaxants. I do feel like I am getting closer to my post surgery self but I had lived the 9 months before that in a modified state...I guess that's why it seems so long...it's coming up to a year now that I haven't walked properly..

[selmaS]

Well then u have an idea on how u should feel...there r many of us that have been like this a lifetime and have no idea where we need to get "back" to.....

I am so glad u had help...u worried me there for a moment : )

I sit in the car while DH gets the groceries....he is always in there too long and loves to park as far from  the door of the store and up a small incline which feels like a hill to me....but I can not walk around the store then up that hill to the car....it is too much.....I do try yo go for small walks when the weather permits....but , since winter it is not too often.Which I am sure is another problem for me.

AS for walking properly...I have had a cane for 10yrs now.....I was losing my balance and had no idea....and then took a job sitting down as opposed to walking around china and crystal....not good if u r loosing ur balance.....lol....

[*Stormy*]

Well, I feel for you, it sounds like your walking is much worse than mine, is there any reason they are not doing the surgery for TC? I avoided having a cane, felt like I could use it at times but managed without. My balance is mainly off first thing in the morning, after I have walked awhile or when I am tired. I am used to knowing my surroundings so that I have something to grab onto if need be!

Ugh, my hubby is looking over my shoulder...I hate that!

[selmaS]

Thanks...but 10 yrs with a cane...I am used to it by now.....and trust me, I tried putting it off as long as I could...but the drs back then thought I had Tarsel tunnel and I had a surgery that left my right ankle messed up...so the can e was then very much needed...once I was dx with chiari  I was told I did not have tarsel tunnel and that was a wasted surgery....but it also left something inside which caused the ankle to lock up....all too much fun.,....

Hi to cmoeller's DH : )

"selma"

[*Stormy*]

That was the point I was worried about getting to.. where I didn't have a choice. So I am very thankful that the surgery has seemed to stop the progression. That's awful having a surgery you didn't even need and then on top of it having it make things worse!!

Oh, and I don't let my DH shop b/c he comes home with lots that we don't need and not all that we do!! I learned that while I was laid up with surgery. Now when we go together he gets one treat item and that's it, I know sounds like another kid LOL but he's the one complaining about his weight!!

[selmaS]

LMAO...that is so funny...I want to restrict my DH from using the computer if I am not around...he bought an item the other day that I can not believe......ne way I know what u mean and yeah they r kids we got to watch them close : )

[pdxmomof3boys]

It's still monday on my side :) I agree about people not understanding -- WHY I had to have the surgery, WHY I can't go visiting, WHY I am not smiling when they come over, and WHY 3 weeks later I'm still feeling tired and worn out. Lots of people just don't get it. My parents have been through a lot of surgeries, each of them having one on cervical spine (my dad has a zipper scar from 2 neck surgeries, mom's is on the side of her neck) so they COMPLETELY understand what it's like. On the other hand, people outside of that circle sometimes just say the stupedest things, "oh, you  have kids to think about so why are you having a surgery and risking your life." OR "Have you really tried everything?" OR "Well, it's not like you have a tumor or anything" and the things I've heard through the grapevine "she's just having surgery for the attention" -- YEAH RIGHT! In my third week post op and haven't really had all that much attention! If I wanted to really milk it, why did I leave the hospital after only two days? Why do I insist I don't need anyone's help? I don't call and ask for ANYTHING.

My husband is amazing,and I think he understands even better now that he sees the significant changes in my health and personality. I'm back to who I was a few years ago. We figured out it must have been my third pregnancy that sent me over the edge to chiari-ville, but the severe headaches didn't step in until June. Lots of anxiety around healing and the gamble I took on symptoms going away...and people don't understand THAT either! Why I took a chance with such a serious surgery.

LOL about hubbies and the grocery store -- mine just went today and got the things on the list, but doesn't watch prices so buys super expensive things that aren't necessary. I want toknow why he can't figure out that if it's not on sale we don't need it now and can try a different store later :) He has been amazing, helping me so much. He is actually at a sleep study right now bc he hasn't been sleeping well for a few months now. Hopefully we figure it out and he can be on his way to feeling like himself again too :) WOW! What a rant!

[selmaS]

LoL...mine looks so closely at prices it takes him soooooo long in the store....but I am glad he will use cupons and every yr gets a free turkey for Thanksgiving for spending so much at that store...so I give him credit : )

I have to agree with y u decided to have the surgery....I feel if mine was dx'd sooner at a younger age I might have "bounced" back a bit better that I am.....so do not let neone make u defend or second guess ur choice.

Let it all out !...lol.....

[ChiariWolf]

Ok not monday... but we'll date this monday. I always try to be positive, it's a must to get through an enjoyable life. But.......

Yes, I"ll give you a rant! "Oh he's fine, I seen him up walking around just the other day. He can do anything he wants to do." grrrrrrrrrrrrrr  How I do wish that insane opinion where true. But then again a good friend felt that way about himself a few years ago as well. He retired in his mid-sixties to take it easy for a while. The very next day, after no previous signs, he napped on his couch for a few minutes. Then upon awaking he stood up and dropped dead on the spot from a massive coranary. Not that we are in that position, but don't let the outside of the book fool you as to what is inside.

Wolf

[selmaS]

Posting early for our friends in different time zones and my memory....watching the superbowl...so I may forget ....  : D

[soccero]

it's not Monday yet but it's only 5 min away. I am sick of not being able to tell my friends why I had surgery. They ask me and I just can't say anything its not like I want to cry or anything just nothing will come out I dnt no how to over come this. I guess they understand cause they just change the subject like they never even asked but it embarasing. Any sugestions?

[Spaceystac]

Have you tried writing anything? Sometimes the helps you concentrate more on how you want to say what you are trying to say, with out the chance of it coming out wrong. Maybe you could write it out and give it to them to read, or read it to them.  
If you arnt able to write it out how you like, you could search for the information you want to share on the internet, then print it off to help you out.  Hope this makes sence Im super sleepy with blurry vision!!! : )

[Devin215]

My rant for Monday is the pain associated with Chiari and the other conditions that go along with it like facet degeneration and bulging disks. I have them in my neck and Lumbar spine. Also trying to convince the Dr.s to get you to the right department  after surgery to handle the issues and help you feel better and just Doing the right thing and what they are supposed to especially in a timely manner to minimize our pain and frustration. Oh and the Lovely phone tag/E-mail wars with the Dr.s I can't stand that!!!

[northernstarmn]

hi, what i did to make things easier on myself is wrote down symptoms and findings and then the suggested form of treatment -surgery- what it intaled and why i was having it and what outcome i can expect. even explained how healing is going to be and i will likely have days i cant speak iam frustrated or simply just in pain.(email it to those friends who ask)... it made it a lot easier....................and then my husband knew everything so he did not have a problem speaking for me when he seen i was struggeling...

my rant- is snow iam so sick of it yeah ok i live in the north but c'mon i didnt know i moved to alaska-- geesh---i want rainbows and sunshine, sadly i know i have about 3 more months of this crap!---

And when you tell doctors something hurts (like the hose from the shunt) and they look at me like i was smoking crack and say stupid things like "dont lay that way" or " dont move" sometimes id just like to give them that idiot slap  ya know that whack to the back of the head...

Ahhh i just love it when someone says how ya doing and i give them a vague answer and they look at me like WHAT? i say look iam walking i can concentrate long enough to speak with you-- no matter the amount of pain iam in or what other issues i have to you, you only see whats on the outside so for the brief time of your concern iam doing alright....LOL.....ahh yes gotta love those "you sound better" WTF does that mean? I sound better, you sound like a nut too but geesh i know you are not crazy LOL.....(Sorry something just bring the smart alec in me out hehe)  

[soccero]

thanks everyone for your help that helps alot
Molly

[selmaS]

Hi Molly...I know that must be a difficult ? to face and try to explain...y not copy Dr Oro's poem and take that with u....it explains alot even to those who do not have chiari.

Give it a try, they may ask more direct questions u can answer after reading it.

Good luck sweety

"selma""

[*Stormy*]

Molly- It is tough to explain it to others...I always have it straight in my head but then it doesn't come out of my mouth that way. Part of my problem is that I try to go for the "shortened version" b/c I am so tired of giving the explanation!! When I do that for some reason it makes no sense.... What worked best for me was just to email everyone but I think I have come out looking pretty anti-social and I STILL have to explain to everyone at the grocery store etc.

northernstarm- I've got to say, I hate it when people ask how you are doing and then they don't really want the truthful answer!! It can't be summed up in one word so I just usually say "ok, some days are better than others." If they truly want to know more they will ask (most don't)... I get the "oh you look better" thing too and I'm thinking "what, just because I brushed my hair and put on makeup for the first time in 5 days?"  It seems you can't do anything without someone insisting you are MUCH better just because you can do it!!

Well...I think those things covered any rant I was going to come up with except this increasing problem with my tongue...it is driving me nuts!!

[ChiariWolf]

At first I felt like jumping down my son's throat... but now after a few mos I've come to appreciate his simple but direct answer to those questions. He has told a few people "Dad just has too many brains so they had to make room in his head for them before they squished out his neck like a frosting spreader." :-) Strange way to put it but he's nearly 20 yo and is frankly his Dad's best protector. He knows that I don't mind people asking, but only when it's someone who really cares not someone who just wants to be 'in the know'. So he tends to fend off the 'in the know' folks with that response. Those who really care tend to ask my wife as they know I'll just say "I'm fine, how are you".

You are way too young to let this control you. Please try to remember, Chiari and all of it's symptoms tend to control our emotions rather than us controlling them. 'Feel' your smile and that will help you deal with even some of the stupid doctors comments. At one point I did ask my PCP "Oh Thanks! Is that how you deal with it?" not snide, not rude, but just in a manner so he had to think about the question. He's never made those comments to me again.

Wolf  

[zygy]

I find having middle school kids is making this more interesting..... I found the hardest people to explain this to is my kids!!!  They seem to hear it the way you hear things when playing the game telephone.... who knows how many stories there are out there about my head!!!  I heard my son the other day saying "no, my mom's not crazy"  ... I asked him why they thought that,... he said well, I told them you were having neurological issues.......... I never used those words!!!  We had yet ANOTHER conversation about what it is... who knows what he will say next time.  At least I can laugh about it most of the time but I really would love to hear all of the things that they have said.  I really like the frosting spreader story!!!!  I guess our kids are just going to tell it how they want to :)  

[*Stormy*]

LMAO Wolf- your son's explaination is hiliarious!

I just told my 7-year old once that "mom is so smart that her brain is too big so they have to make more room", that one seemed to stick and it was soon spread all over his school. Now when the teachers and other parents ask how I am doing he replies "Well she's better now b/c she is making us dinner..." I guess that is the criteria I have to live with lol

[northernstarmn]

my 9 yr old(soon to be 10) son knows all about chiari, hes been with me through all this...just as hubby...i have never tried to hide things from my kids, I want them to understand what is happening with me (or whoever is involved).

his entire school knew something was wrong with me, of course i have no name LOL..
but he told them BEFORE surgery- her brain is being squished like you would  squish play dough through your fingers, so she needs to have it unsquished, which means she is going to have a surgery which will release the brain....He had a nice long talk with the NS who done the surgery and dr was awfully suprised with his understanding and use of words..LOL..(hes 9 going on 15) anyway after surgery he told his class all about the inscision and the meds iam on oh and even told them i have part of a pig inside me and they installed a shelf..LMAO (after i heard about the shelf i corrected him- that it is a plate not a shelf)  etc...he was like a walking medical book about chiari.....then things took a turn and he was again like a walking medical journal and giving daily reports to his class and anyone who asked LOL....

our kids can be amazing!

[selmaS]

Posting for our friends in different time zones and so I don't forget : )

whom ever posts first can pick the rant topic : D

[rod44]

Pain Medication.....
I feel when a doctor puts you on pain meds they accept you are in pain ...but what I cant understand is why not just at least try to find and treat the cause of the pain, pain meds give short term relief and are not a cure some even cause more problems in the long run. Most of these drugs have side-effects as well as dependency issues.....  

Ray

[ChiariWolf]

Ditto that Ray!!!! I've voiced that concern to my own PCP. The response was "That is the only way we have to gauge pain." Upon further questioning by me he told me that if you don't feel you need the pain meds then they must assume there is no pain. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR in other words if you are not willing to become an addict then you are faking it. We had some choice words. I've seen him once post-op where he asked "So was it worth it?" He firmly believed there was no Chiari and is self proclaimed expert as he has two patients with Chiai. I explained to him the relief that was obtained via the surgery. He offered more narcotics!!!! My conclusion - There is a saying amound engineers "No one knows what they just don't know." Definition some folks are comfortable with what they have already learned and just are not smart enough to allow themselves to learn something new.


Wolf

[selmaS]

This has been one of my pet peeves for yrs....only being offered a band aid....they didn't bother to find what  was causing the pain....so much easier to say take 2 of these and let me know if u get worse....ugh

[*Stormy*]

I echo that again... That is what I feel I am up against too, the surgery has made my legs work better but there is still so much pain....especially if I actually want to do something with my day!
I feel like everyone is like "but you walk so much better" and I don't deny that and am very happy that I do but I still have all the pain I had before!! I find that with doctors if they can't see it then it must not exist!! And unfortunately with most of it it can't be seen. That is the battle I am going to take up with my doctor next week, I'm not going to push aside the pain and let her tell me everything is ok and I will not drug myself up like a zombie...I have a family that I want to be a normal mom for.
Pain is our body's way of telling us that things are not right..so why don't the doctors listen???

[selmaS]

I had the same problem with female issues and not one dr would listen until it no longer would be of ne help to me......I really had lost faith in drs and really  will put them thru the ringer when we have our first visit.

If they do not pass my inspection I do not go back....I have had several ENDO's and am currently looking for another one as the ones I had been to had no idea how to treat Hashimoto's or test for it per current info on the internet.

sigh..........

[*Stormy*]

I know doctors hate the internet but sometimes I think we'd be better to diagnose ourselves lol...If only would could order our own tests!!

To find another PCP in my town is close to impossible otherwise I would be with a new one now.

[selmaS]

I tried a few yrs back to get a new dr....but none that work with my insurance were taking new patients...but in the long run my PCP has been very open to learn about not only chiari, but Hashimoto's as well.....

All it took was understanding what was going on with myself and he was open to listen and did some research himself....so confront  in a nice way and u can become a partner with ur PCP which we really need these days.

[rod44]

Prevention is the best medicine doctors tell us......lol when it's convenient.....
My GP is understanding and said well we need to rule out the obvious first before we can say your signs/symptoms are Chiari related so she now wants to do an MRI scan of my Shoulders after doing a physical yesterday. She said the movement here was “very impinged” she also gave me some pain meds so at least she is trying to help and not just fobbing me off on pills.....

Ray

[selmaS]

posting now for those members in a diff time zone and bcuz I may forget : )

[*Stormy*]

Too happy to rant....my son fell off a 3 foot drop onto concrete (helmet on thank goodness) at the bike park...knocked himself out cold for 3 minutes. Spent most of Saturday in the ER but he came out of it so well...he is home and alert and I am just so thankful!!!! His poor little face is all swollen and he has a bad case of road rash but it has reminded me on how lucky I really am...I guess this should really be on Tuesday's post but I just wanted to share my happiness that he is ok!!

To fulfill the rant qualification...the ER doctor listened very patiently as I explained to him my concerns that I had had surgery for CM and was concerned that my child may have it as well and if so, he has now had head trauma...His response: Even if he does have CM...a head injury would in no way affect it! I was too tired and stressed to argue but once again so many doctors are misinformed...

[selmaS]

So glad ur DS is ok...but I would deff keep an eye on him...like u said this dr doesn't have a clue that a head trauma could affect him if he has chiari or that even without any family history a trauma like that can cause acquired syringomyelia.....and it can take time for it to show up...

I pray that he does not have an issue going forward either....and that ur releif from this incident stays intact!!

So, he is a skateboarder huh?.....

"selma"

[*Stormy*]

Yes, if you can call it that..he is still in training...lol He was actually riding his bike though on the jumps (the park is for both) and he flew right over the handle bars head first off the jump. I don't think I'm going to be able to let him go back there anytime soon...

[selmaS]

Well boys will be boys and they will make their own track and it could be more dangerous than that one.....I think u may want to get him lessons,where he is taught safety as well....

[selmaS]

posting eaarly so I do not forget our friends n diff time zones................

[opinmin]

I hate when all your testing is coming back fine and the physician starts reaching for the Rx pad to write out prescriptions for anti-anxiety/anti-depression medication.  Duh, can he/she figure out a patient will be anxious and/or depressed if no one can figure out what the hell they have and their bodies are doing strange things.  

Or, I just love this one, if your diagnosis isn't on their "cookie cutter" list, then you get the "brush off attitude" instead of being referred to someone who would possibly know.  

I never tell the physicians I am seeing that I am a nurse; wanna see how goofy they can act.  My hubby told one of my physicians and he stated  "alot of doctors don't like nurses because they know alot."  I thought it should not matter if you know I am a nurse if you are doing what you are supposed to be doing.  

That's my monday rant.  

[selmaS]

HI...I can relate to all that and insurance companies that don't go back more than 2 yrs to see u have tried all the other options b4 resorting to surgery.....ugh

[*Stormy*]

Can totally relate...as you know!!

FYI- my NS told me that in a lot of cases in CM..the nerve tests etc. do come out normal b/c they don't test for the right thing and in the right position. I was told all my tests were normal but when I finally got smart and asked for copies of my test results I noticed something... My ENP test I actually had a longer than max latency in my R leg from the t12-L2 area and in my L leg they didn't even record a signal!! On my EMG my results were listed as "normal other than tremulous firing patterns in all muscles"..so wouldn't that mean it was NOT normal!! Oh, and my L leg tibalis muscle failed that test..also was never mentioned to me. The funny thing is my Left leg started all this trouble and was the biggest problems and NONE of this was brought up to me!! They tend to take your results in bulk and give an average assessment instead of looking at each piece. So what I am saying is ignore that they are saying that your test results are fine so it's anxiety b/c they are just not looking properly!!!

Carolyn

[selmaS]

Carolyn....soooooooooo true, I will say this, we may not have needed the anxiety meds b4 we went to many of the drs we have had to  in order to get a dx, but after dealing with them and the insurance company we deff need them...lol....they just do not listen and have the time to really appreciate all that is truly going on with us.....but if I get one more test back that says "normal" I will deff be re reading or getting a second opinion.

[*Stormy*]

LOL...that's exactly it...we need the drugs to deal with the DR's!! Well no more for me, I'm not letting any of them take me down again!! Even my GP looked confused when she read over the EMG result with me...like it wasn't normal.

I hope I can spread this to everyone...ASK FOR ALL COPIES OF YOUR TESTS!! A lesson I learned a little too late but I will not make that mistake again!

Carolyn :)

[selmaS]

Posting for our friends in diff times zones and so I do not forget...last  week we didn't have a one rant on this thread......

[*Stormy*]

I guess that is a good thing...we were all making progress last week maybe??

All I have to say is I'm sick of this stinking cold which is not only bugging me but has my little guy up every 2-3 hours at night.....AND I am tired of waiting for doctors to get my results back!!!! Starting to feel like I have been left and ignored again...but maybe it's just impatience, I don't know...

[ChiariWolf]

Nah, no sense complaining. For me I find the best time to complain is after there is no need to complain because things like the cold have me feeling no exactly the best that's the time when I don't want to think about how I feel. So I"m not going to think about how many of us have become natures barometer becasue if I did then today I'd have to really complain. Brother just got back from the job in PA. Has two days till he has to travel the other direction so we went out to help unpack and this stupid wind............... gggggggggrrrrrrrrrrrrrr............ I won't think about it because if I did then I'd start a rant about how the cold makes my head feel as though it's pulsating and driving me nuts.... but since I'm not allowing myself to think about hey all is great!!!! :-) Hey we're alive, just not a great day and in all honesty yeah I feel pretty fed up and impatient with this stupid chiari garabage myself. So it' s time for more chocolate, that fixes all you know.

:-) Time to go visit with my nephew and neice in a warm house now!

Wolf

[selmaS]

HI Wolf...glad to hear u got to spend time with ur brother and ur nephew even if it  was in the wind......since u r a wolf u can just howl at teh wind...right??...lol...

Carolyn, not sure we were all ok last week, just that the thread may have been overlooked or not a lot of activity on the forum last Monday....? who knows....

I too am looking forward to warm weather...I want to get in the pool and get fresh air, and out of the house !! ...lol....

[selmaS]

posting early for our friends in diff times zones and so I do not forget v: )

[selmaS]

Well I am going to rant today ....I hate having to look at medical insurance plans and try to understand them...I have been doing this since December and still have yet to find something we can afford that actually gives us some kind of benefit other than not having insurance at all...it is nutz and going to get worse!!!

[*Stormy*]

Selma..this new health care reforendum (sp?) that just passed...will this make it better or worse for you? I know I asked you that already but it be interesting to get some views on it :)
In Canada we have mandatory care (MSP) for everyone but that does subject us to gov't regulated waiting lists if we don't want to pay out of pocket (my 1st MRI was scheduled for 9 months away!!) If we do pay out of pocket then none of it is covered!! Being self employed we don't have any extra insurance...we do pay MSP premiums..but I find for the most part we are saving money just paying as we go. For our family it would be about $400 a month for extended health care and dental!!!

[selmaS]

Worse hands down......

The problem I am having with the LTD is gov involvement..it now makes it a federal issue and there r no lawyers that have the experience with this law and bcuz it costs too much to bring suit, none r willing to get involved.....so, the law didn't help me at all as I know neither will this other issue...so sad.

This all justs adds to the frustration...

[selmaS]

posting for our friends in a diff time zone....first to post picks the rant topic : )

[selmaS]

Well it is raining again and the weather keeps fluctuating btwn spring and winter....I know all too common for this time of yr....but now I am getting those ice pick jabbing pains in my ear again....is neone else getting this and is it the change in weather...???

[ChiariWolf]

Definition:

Chiari Malformation- head is a giant barometer

                    {side note to self- must install pressure relief valve}

yeah we had the rain you are getting today yesterday. For me it's worst before and after than it is during the rain. Grab some chocolate my lil sis and go relax!

Wolf

[shanmomof3]

The weather is driving me crazy! I know its just the way it is in spring, but 70 degrees one day and 35-40 degrees the next day, and dont forget the rain! Its driving me MAD!! And i just know i'm gonna end up with a cold and i REALLY dont want that! Yall know how fun the sneezing and coughing is!

[selmaS]

I always sneeze and feel worse with the barometer changes...but this ear pain is what is getting me now...does neone else have it?

[*Stormy*]

Selma...it sounds like the ear pain that I was dealing with a few weeks ago...it was brutal!!! Everytime I turned my head it really hurt. I'm pretty sure that it went on for almost a month before it got better...it felt so sore and blocked that I am wondering now if it was a swollen lymph node. Does it feel tender when you feel under your ear? Mine did.

We had a HUGE thunderstorm today...the first couple of times I almost jumped out of my skin. And yes, it has been raining all day....so I stayed inside for most of it :)

Carolyn

[selmaS]

No...it doesn't feel tender....just like a earache from the wind.....It hurts when I swallow and I can feel the cold of my drink in my ears...this is just too weird...I had this b4 surgery and haven't had it since, so I wondered if it i was weather related....

[*Stormy*]

Just remembered...mine hurt when I swallowed too...and I was getting frequent sore throats. Does it hurt when you move  your head the wrong way?

[selmaS]

Carolyn,
Not sure what the wrong way would be , but I really don't think  that is an issue.
I know some of this must be weather related...it is raining cats and dogs.....lol.....

[*Stormy*]

I'm sure it could be....hopefully the sun will come out and you will feel better :)

[selmaS]

well the sun is out...and I have what feels like pinching on my lower left of my back and it is affecting my left leg today...throat is still somewhat of a bother....ears still jab every once in a while....eyes blurry too.....mayb I am just over tired.

[*Stormy*]

Maybe it is all those Mary Poppins decorations you are doing!! I know those kind of things bother me after I've been at it awhile...but I love doing it..so I usually suffer the consequences later...

[selmaS]

I haven't worked on ne for the past 5 or 6 days....plus I was tight in my shoulders prior to even starting......

[selmaS]

I pray all had a day off from chiari to enjoy the Easter holiday!!

[selmaS]

So sorry I have not been spending much time here, I miss all of u and I promise I will be spending more time here after this project I am working on....I am enjoying what I am doing, but I do feel bad that I am neglecting u all.......

[selmaS]

I posted this too soon and then found a ton of threads I had to comment on...and that pushed this down...so b4 I go to bed, I am posting this to get it back up on top...lol....oh well...night all....zzzzzzzzzzzzzzzz

[rod44]

Hey Mom we miss you as well lol.


Just wondering how people feel about this star rating thing, I was looking on some of the other community's and it is causing some debate lol......

rod44********** LMAO

[ChiariWolf]

Hey selma,
You are doing just fine lil sis. Yes, you are the glue here but there is a unique thing about kids. When you train them right and then things happen that cause the parent to go away for short spells.... they normally follow in the parents footsteps. Another nice thing about kids, when the parent has too much of a load they always are more than happy to step in and pick up the slack. So Lil Sis, don't allow youself to beat you up when need some time, you don't beat us up do you? Ahhh... yes it is good to hear selma on the board even if for a day though :-)

Ray, I'm with you about the stars. Frankly, I find it an insulting installation. Mostly because if there is someone who doesn't post often they find it a deterant to their posting. But at the same time I remain thankful that MedHelp sees fit to provide this forum. Of course we could do it without them, but because of them we don't have to do all that work and maintance. So whatever is whatever...

Wolf

[rod44]

I am with you on this, selma is someone who dose not get the recognition she deserves for all the advice and support she provides on this and other community's....

I was kinda wondering how they decide the "TOP ANSWERS", is it the quality of the answer or the amount of posts.......

[selmaS]

HI All...I have a little time as DH had an estimate to do this AM, so I am waiting on him to take me over to my project.....

AS for the stars....look at it as a way for newbies to see who they can direct a question if, their question goes unanswered for what ever reason.....

I was aware they were adding this....and as far as I am concerned...it really doesn't mean all that much....if u know the movie  The Wizard of Oz.....ignore the little stars behind the names...lol......

I have not taken the time to really read how these are to help....and I have not heard ne comments as of yet...except for u 2...lol.....oh Carolyn had asked me...but, I will have to look into it after the party on Sat....as much as I am enjoying this project, I feel so disconnected from my family here.....

And as for who and how they determine who gives top answers...sorry, I don't know...but I will try to find out : )


Miss u guys : * (  

[*Stormy*]

Hey guys

I think that the stars indicate just the frequency of how much your answer...not the quality...or I'm sure I'd be closer to the bottom lol... It is a little embarassing when you have the amount of time you spend of the computer staring you in the face LMAO I guess I can't deny it now!

Selma...you have every right to take time off and do other things, I hope you don't feel pressured! I guess with this disease it is more of a worry wart thing, we seem to assume the worst if you don't come on but PLEASE don't feel bad or guilty!! You are an invaluable person but you have to take care of yourself first!!
I agree you should get the recognition, however, it only took me a post or two to realize your value....ok enough of the sappy stuff lol

I hope everyone has a great day today!! If we start out Monday well..then there is hope for the rest of the week!!
Carolyn

[*Stormy*]

Ok it's Monday again (or almost) and we need to get a good rant going...lets get it all out so we can focus on positivity for the rest of the week ;)

Chiari is the "invisible disease" b/c no one else can really see what is going on. I get the "but you look so good" and "I know you are tired but we are all tired!" thing all the time!! Then it's a question of trying to convince them that you are worse than they think you are (which I am not likely to do) or you just give up trying to explain!! The problem is I still  need some people to understand why I just can't do this or that anymore. Like the friend that invites you to a social function and you have to call them to back out the day before b/c you know the way you are feeling you just can't do it. Yet you can hear it in their voice that they really don't understand...after all you've had the surgery right? Everything should be all better now.....

[ChiariWolf]

OH man did you nail it! So may feel like " oh you had the surgery so your fine now right?" I so wish that where true!

Perahps it is because it's what I"m fighting right now but - I hate these Privacy laws, I love the protection they give us. But hate the retarded extent you have to go to just to get your 'own' medical records!

[selmaS]

Hi all I am back !!!...and talking about tired....dang....I hurt all over....and Carolyn to show how I really feel...I stopped wearing makeup.....it hid the truth...lol.....

But, to do things like normal people we have days that we suffer from it....I am still in my PJ's....and I came downstairs only bcuz I was hungry.....I really want to go back to bed...but, as we all know, even tho I am extremely tired...I will not be able to sleep tonight....ugh...so, I am sitting here trying to see what all I missed here....I know I missed all of u......

Oh, and my rant...something I learned over the weekend...did u all know that the gov is stopping production of regular light bulbs for the cost effecient florescent??!!!

Really....the gov will not allow the older style to be made ne longer and we will only have the florescent type that effects us....I am steaming mad over this....I understand that it helps with costs and all that, but comeon.....the gov should not make the choice for us...especially since many of us r affected by this lighting....ne thoughts???

"selma"

[ChiariWolf]

:-) Not a rant, but the only thing better would be to hear your voice selma! Hoppy to see you made it through and no doubt had a reasonably good time!!!! Welcome!

[selmaS]

Awwwwwww thanks wolf...I did indeed have a good time...hurting and all...but it was all soooooooooo worth it...we surprised my friend and that made it all worth it.
I will be posting pics as soon as I can upload them so u can all see what I was doing in my absence from MH.

I miss u guys all soooooooooo much!!

"selma"

[WarriorMomma]

Co-Pays Co-Pays Go Away!

If my ex husband weren't such a poo-poo head, I would ask him to marry me (yes, again) for his awesome insurance....hahahahaha!

[*Stormy*]

Selma..glad to hear that you made it on!! But even happier to hear that you are taking the rest you need! BTW- makeup..what is that?? ha ha..my poor DH I'm sure he would like something other than sweats, hair up and glasses on...
As for the lighting, I have switched to the energy savers in my house but it has bothered me on how they affect me. Part of my solution is that I bought lamp shades and covered lights to soften the glow...Also, in the light fixtures that I normally would put two normal bulbs in, I only put one. You are right though, that type of lighting affects many of us and we should have a choice or at least an alternative, I'm sure they could come up with something that is energy saving w/o all the bright light. I am a huge recycler so it is this struggle in me...most of the time I just leave the lights off!

Wolf..your system must be a lot harder than in Canada. I didn't even realize I had the right to ask but when someone informed me, I just asked my GP and she photocopied everything. Also, I learned that when I go in to have bloodwork I can request at that time to get my results sent to me so I actually have them before the DR contacts me. What does make me mad is that no one really lets you know that.....you have to figure it out for yourself!!

[selmaS]

Insurance in general is a pain we don't need, but co pays can be a real pain too...lol.....we have to ask b4 the appointment what our insurance will cover so we can budget our appointments....sigh

[ChiariWolf]

wrrrrrrrr-whoooooooo-whrrrrrrrrr- honk honk honk

Code Blue coming through! Stats no air in 10 mins, heart stopped on the way in we need a room stat!!!

Yes, can I get your insurance please. Now we will need those in triplicate please.

[*Stormy*]

That's terrible!! I guess that is one plus we have here...they give you treatment right away and go for the information later... I can't imagine why they think a person's life is not more valuable!!

[ChiariWolf]

The privacy system really is a good thing. I'm just in a rather not so good mood today and rather t'eed off at a couple doctors.

You see a week ago was my first visit with a Pain Doctor. He understands I won't take pain meds but am asking for steriod injections to see if they will help with ruptured discs. Well he found additional ruptured discs but wants all copies of scans from CCF [a different clinic some 3 hours away] before treating me. NP, I understand that fully. However, he also insisted that all he needed was my CCF ID number and he can get the films. I disagreed but he said no we can get them we do it all the time, no forms signed nothing. Fine, whatever... but on the way out his PA quietly told me call Monday make sure because I think you are correct in that he can't get the films. So This morning I called, sure enough they didn't get the films. I called CCF, they where most kind, but told me they don't even offer an online service such as the Pain Doctor claims they use all the time. grrrrrrrrrrrrrrrrr Then she confirmed that not even my PCP can get a peep from them unless I first sign a release form. Well the films where already supposed be on their way to me for my private records so I"ll have them soon enough. Problem is now it will delay the injections for another week. We'll deal with it I"m just a bit peev'd as I didn't want to 'deal with it' for another week and if the Dr would have given me the form last week when I asked for it all would be well now. Oh well, I'll go tommrow anyway and politely make him eat crow! He really is a nice guy but this time he needs that crow pie! :-)

Overall though, I am glad the privacy laws are in place. Just kind of a pain sometimes. Such as an older woman from our congregation. Before mom passed she was friends with my mother. Now this woman is not in the best of mental health. On a recent Dr visit they wrote her a new RX. It was the same meds but in a different doseage. She went from taking a half pill a day to getting one tablet of the correct doseage. Well in her mind it was the wrong meds so she refused to take it until the pharmacy corrected the meds. She is alone, totally no family that even claims her. So another friend took her back to the pharmacy and explained the situation to the pharmasist. They flat out refused to even address the situation. This woman could have died from this, but they still wouldn't even call the Doctor as the person with her was not family! Finally at midnight we got her doctors phone number and called him at home. Of course he immediately took care of it and had private words with the pharmacy the next day. I understand, but good greif this woman literally could have died! If it were not for the er she would have most likely not been with us now. I find it sad when the world we live in has to go this far to protect our individual privacy.

Ok now time for a peanut butter sandwich!

Wolf

[ChiariWolf]

The whrrrrrrrrr thing was a joke, but honestly sometimes it seems that way. Well, for instance some 16 years ago they amputated my left leg. While in the hospital I was overdosed by a morphine drip machine. The day they sent me home my breathing stopped, I was breathing but for some reason no ox was getting into my system. Wife had two young ones so she called the ER. They rushed me into the hospital and because I was still getting enough air to be awake the hospital was presurring me to sign this and that. I was not in my right mind and just threw the clipboard down the hall I was in and told her something to the effect of fix the problem then come talk to me. I'm really not like that but was bit out of my mind right then. So yeah, their stupid forms are a bit of a pet peeve to me anymore.

[selmaS]

Wolf, I can totally relate...but I enjoy the way u phrased it all...lol......


I think it is  nuts that the drs will not even give a courtesy call to remind u of an appointment in ur own home bcuz of privacy...I mean really, if those people r having an issue with the people they live with than give a cell number only...geeze in this day and age of technology this is just all so ridiculous....I need those calls to remind me...and I did sign off on the paperwork to get them, but u have to do it every so often so they know it is the same circumstances...what? All bcuz of a few big mouths that sued...nutz

[mikeysmom1995]

here's a good one! I got a statement from the insurance company today denying a diagnostic test that my son had, so I thought I would call the insurance co.and find out what it was for and why it was being denied. After I gave the gal all of my info she put me on hold and when she came back she said that they were denied, and I politely replied " what diagnostic test are we talking about," as both boys were at the doc that day for routine check ups. She replied, " I can't tell you that ma'am it is against our privacy policy to disclose that information."  I said ARE YOU KIDDING ME, HE  IS A MINOR CHILD,MY MINOR CHILD AND I Would like the information please. She politely told me to call the doctors office for this as they are the only ones that would be able to give out the information. WHAT a load of CR**  So I called our Doc office and said Hi this is your favorite high maintenance patient calling with another insurance dilemma. I explained this to her, and she said that this is happening more and more. So great, now we can't even call the insurance company to inquire about why something isn't covered for our kids cause its privileged info. Thanks for listening,
Barb :)

[selmaS]

Barb my sister had the same problem getting info on her own son too!! This is just nutz, I understand we need privacy measures in place, but enuff when it is  ur child, goodness what if the child had a life threatening condition and this kept the parent from getting the child the much needed care and treatment?....who would be responsible?

[*Stormy*]

Just to compare...that seems really strict to what we have here...I don't think we have anywhere near the privacy laws here!! Of course, we are all covered under the same basic medical so we don't have insurance issues either. When I called to get my blood work all I had to do was give my carecard # over the phone and then she would verbally give my results!! I'm not so sure if it's a good or bad thing?
PS( I would be absolutely irate if someone held medical information about my child from me!!)

[selmaS]

Carolyn...it wasn't always like this...but, there were people that sued for invasion of privacy bcuz a message was intercepted by a soon to be x...from an answering machine....so, bcuz of the litigious nature of people we have this awful bit of red tape to deal with.

I feel the biggest problem is the Judges allow these frivolous suits to even be allowed to go to court...oh well...so now we have to deal with this and many other things have been decided on this type of issue as well....sad state of affairs I am afraid.

[selmaS]

ok...I mentioned this last week, but didn't see ne replies...so, what do u all think about the fact that we may only have florescent lights to light our homes with?

Especially since they seem to affect many of us adversely....

[soccero]

I hate them they  r to bright and make my head worse! By the way wolf I love ur picture  of the dog! So cute!
Molly

[selmaS]

Molly...well our Gov officials have said that the companies that make the regular light bulbs must stop making them and that only the new style of florescent can be made...we have to speak up and let them know how these lights affect us !!

[*Stormy*]

Selma...I commented...but I think it got missed...

This is what I said:

As for the lighting, I have switched to the energy savers in my house but it has bothered me on how they affect me. Part of my solution is that I bought lamp shades and covered lights to soften the glow...Also, in the light fixtures that I normally would put two normal bulbs in, I only put one. You are right though, that type of lighting affects many of us and we should have a choice or at least an alternative, I'm sure they could come up with something that is energy saving w/o all the bright light. I am a huge recycler so it is this struggle in me...most of the time I just leave the lights off!


So you didn't have to go looking lol..

[WarriorMomma]

I hate that my career will be ending very soon due to CM. But that is God's will. And I have faith :D

[selmaS]

Carolyn...thanks...I really didn't see ur comment or much from neone to be honest with all that said florescent lights bothered them, I thought this issue would get more posts....

WarriorMomma...I know how u feel, I am out of my job for 2 yrs now, and I was employed with that company for 15 yrs!!

Hang in there : )

[*Stormy*]

Selma...no worries..I think that 2 ppl posted like right after me and so I kinda got bumped really quickly!! I have heard of some ppl actually getting a rash from the lights after spending too much time and being too close to them..doesn't sound good to me!

Warriormama- I know how you feel too :( I was finally getting things together and went back to school to get a career and then bam! I was totally railroaded...I have to keep the faith though that I will get back to it or that I will find a new path that I will enjoy just as much!!

[selmaS]

posting so our friends in the diff time zones can have a go...pick u topic to rant on  : )

[blondeballerina07]

I am starting on Sunday I have two finals tomorrow and I have had an awful weekend I have not been able to get out of my bed or walk at all. I have had such bad chiari headaches that I haven't been able to turn on a light, focus, or see straight to start studying so I just know they are not going to go very well!

[selmaS]

Sending good vibes u do well on ur finals......and that u feel better!!

[soccero]

I was in the er and we just got the bill and we go an extra charge for 200 dollars for being after 10 or after hours what is that isn't that what a er is for? That is so stupid.
Molly

[selmaS]

Hi Molly.......that sounds more like a all night clinic than an ER...doesn't make sense...I would deff challenge it/

[soccero]

we were at  shady grove emergency room ( I was born there LOL) but it's real dumb an er is for after hours!
Mollly

[selmaS]

I agree Molly...makes no sense at all...has ur mom decided to challenge the bill?