MONDAY'S RANT

[selmaS]

"Rainy days and Mondays always get me down".....so lets rant all day Monday- each Monday a different topic-we will poll for next weeks.....so this week lets do a favorite of mine.....doctors!!


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

[selmaS]

  What NO RANTS on our first Monday rant thread return?

   It is raining, so what r u doing instead of a picnic today?......I am sitting inside listening to music and  enjoying the fact we had our picnic yesterday....

  But I do hate being stuck inside on rainy days.....what r u all doing?

[zygy2]

:)  Doesn't feel like a Monday so maybe that is the problem.... maybe weekend Mondays don't get us so down :) LOL  

If you want a Dr. Rant... here goes!  I HATE hearing... lets deal with one thing at a time!  I am finding that if they had looked at the whole picture this would all have gone so much quicker and easier!!!  Now with my Daughter, I am very happy they are going to look at EDS but once again said "one thing at a time" when I mentioned POTS as another possibility!  Someday maybe they will back up and take a big look!!! -zygy

[selmaS]

  Oh I hear u on that one, and there r times I found myself saying I can only deal with so much so lets deal with this for now....sigh....but I totally agree they do have to look at the whole pic and consider they r all connected instead of , jeez this person has a lot of things going on......lol...

  Could be, but the weekday threads r back...lol....Holiday or not : )

[chrissi_b]

i am well and truely fed up of doctors not explaining things properly and dismissing other things that are important i have to google alot of what thwy tell me which is definatly not a good thing lol think i should of been dead several times lol xx

[selmaS]

  U do not have to google all ur questions, come here let us try to help u...that is y we r here....we may not be Drs but so many of us have been thru the same situations as u...so, let our experiences help u.

[chrissi_b]

thank you i will do its less scary than googling anything lol xx

[RheaAnn]

I am so glad that I know so much about my own body and how Chiari affects me. I have known about this for 11 years. So when I went to a new NL due to my old one switching specialties, I immediately knew he wasn't the one for me! All I could think about was how a person being referred to him for the first time would be getting information that was out-dated and no longer valid. Those poor people getting nowhere! It reminded me of my first time getting diagnosed! He told me "Let's not even go there. Don't even talk about it! She will end up worse from trying to figure it out"

WHOA! How about giving a person unbiased information and letting them decide their future plans!

[selmaS]

  My rant this week is waiting...I hate to wait for Drs, for answers and for someone to drive me newhere...ugh

[jiggle93]

My Monday Rant...at least so far, its still early ;)....is trying to get friends and family to help donate $ towards the Chiari walk. I am only asking for one dollar donations, and everyone "likes" my awareness photos and info, but wont throw any coin.  I thought asking just $1.00 would be an easier donation than asking for $5, or $10.....guess I was wrong!   I guess it just bugs me because I see so many others giving to other causes, (or people that want others to help pay for their children to join clubs), and no one seems curious about Chiari. Maybe I'm not good at advertising :/  

On a positive note, I actually had a really great day and got so much accomplished- the pain was kept at an uncomfortable distance which allowed me to get busy on chores!  Happy Monday Friends, wishing you a great week!
Jiggle

[selmaS]

  I know what U mean...I can not get them to post a Chiari awareness pic on their FB page...they will post things for Cancer and all these silly things like post this if u love ur mom...etc....but  not one has posted  or shared a pic for Chiari....it peeves me

[selmaS]

  Ok...this week all I can say is ouch....I can not get comfortable still....not sure what this is, but when laying on a hard floor is better then a recliner something is up....

  

[jiggle93]

*warning* about to have my first true rant!!!   I have been using my FB page to share chiari all month. I change out the pics every few days. I found a tattoo from a chiairian that I thought was very beautiful and it was placed just below her neck. She had a zipper scar and it just explained her fight so beautifully. I posted it. It got a few responses as people thought it was mine, which I explained wasnt- but loved her expression of her personal fight.
My DD decided to announce to the family that I am now obsessed  with chiari and everyone is sick of it.  And that if someone used a pic of hers she would be furious, how its just wrong!
Well, that was enough to shut me up for the entire day, and still so hurt this morning. I do not show my pain to them very often, even deny their questions of if I am in pain when they think I am.  I do everything possible to not make every day about me, I avoid the subject as much as possible by keeping the conversation short and even redirecting the conversation to anything else but me.  I am now wondering if maybe she is right, maybe everyone is sick of hearing about it.  But I then ask, why is this different than someone who is fighting cancer. Why is okay for family and friends to be fighting cancer and everyone wants to talk about it, but chiari cant be? She is always such a caring person to everyone, even starting her nursing classes while still be a Sr. in high school.  She is planning on being a nurse in pediatric oncology.

I think I am just so hurt that it came from my DD, and that of all places I feel safe in our own home to be a chiari fighter. To allow the bad days show, even tho I do it with a smile during the worst days.  So now I find myself wondering where I go from here. She has been so short with me as of late, even telling me what I'll do for her instead of asking if I would be able to what she wants. I am a person that builds walls in the blink of an eye, and I am fighting very hard to not put up the walls!  Do I hide chiari even more now, do I not attend the chiari walk on Saturday?  I just feel so alone right now, and this is a new feeling to me.   Why oh why was I not born with thicker skin?  
Sorry for the sob story...just had no one to vent to, had to keep this bottled up since last night...woke up in so much neck pain from not relaxing I guess.  Hope everyone else is having a wonderful Monday!

[selmaS]

  Hi...so sorry...

I really think it is one of the invisible conditions, no one can see what is wrong, no one can see our pain (well sometimes) and no one has heard of it, that all puts it out of the realm of possibilities.

No I would not hide it, I had the same thing on FB.,..begging non chiari friends to re post or share the pics I have up and my DD finally did it, my MIL ignored a pic I posted to her page but liked the one my DD posted,....and she sent me, along with a friend of mine to post something for cancer awareness week...they all did that....it is acceptable and known...Chiari is not...what will people think....lol...

I say keep pushing....I have been feeling down and alone also as a result of this....it stinks....most of my FB friends have chiari, EDS or both, but the few I have that r non chiarians really let me down....

No worries, as u continue on this journey ur skin will thicken and u will get hurt from time to time, but u have us, and know we r all feeling the same way.

Hopefully some of the scheduled walks for this weekend will get some coverage on TV and mayb this yr  more will know about Chiari.....

And we will have more support next yr : )

[AnnieDear]

Sorry that your DD was so cross with you. My kids are all younger, so they're getting to growup with this. It has been very difficult for them, though, as I'm not the same person I was before our car accident. It's challenging and scary for them to accept that I have to do things differently now and they have to step it up a little more for themselves. Many ways, it is good because they are growing in to compassionate, helpful people. But there are times where I feel that they are getting angry and then explode on each other. A couple weeks ago, I had just started getting real bad again (had decompression & C-1 laminectomy in March) and then my kids' behavior went down the toilet. I have a 5 year old, 9 year old, and 10 year old. One day, they all just started crying. Turns out, they were scared because I was looking bad and they didn't know how to help me. And apparently, I did a lot of complaining about how messy everything had gotten. So my kids felt that they had too much responsibility because they felt like they needed to take care of me. After we had a long discussion about how I don't want them to feel like that, I just need them to help out around the house and be patient when I'm having a hard time (they're all home schooled, so we're in the house together 24/7 lol). It's been much nicer around here, emotionally. The kids really just needed to talk out their feelings and be reminded that it doesn't all fall on them, but it will take longer :) Maybe your DD is feeling similarly?

Good luck!!
Annie

[selmaS]

  Annie that was a really insightful perspective and I can see what u mean...I only have 1 child and she grew up with me needing help...but we had no idea y,,...some days she gladly did it, but there were days she did not understand my need to sit and have her run into the store.....

  Not having more then one, or my child living at home when I was dx'd I do not have that experience to refer to, but ur slant or view seems pretty good to me.

[lazycrazyjen]

My rant is coming on a rainy Tuesday. I've been with this same doctor for a year and i've taken every medication he's offered. I've had almost no relief. And he won't let me have enough fioricet to last me two weeks, let alone a month. And he doesn't give refills - I have to call every thirty days.
After begging for another medication, test, treatment, or doctor I got an appointment for an EMG and another MRI. And I got the explanation that I'm med resistant.
He really doesn't think the numbness and memory are not related to anything.
So, I've taken the initiative to get my own second opinion for treatment. But now my husband won't join me to even hold my hand. I'm feeling awfully defeated.
Thanks for the opportunity to rant. I needed that.

[selmaS]

  Hi Jen....do u know if u also have EDS,, many with EDS can have this issue with meds or develop an allergy...either way it limits which meds are able to help....

We all need to vent so we do not explode or implode.,...lol...so do what u have to so u r ok : )

[lazycrazyjen]

My doctor will hardly talk to me, let alone consider my opinions. So, I have no idea if I have EDS. My bff said she would come with me next month to this new doctor, if she can. I know I have zero pain tolerance, and I'm ok with that. But I know I also react to meds very well, when they're the right meds. I always have. I get all the best effects and all the strongest side effects. I just feel he hasn't given me the proper consideration a headache specialist, or a chiari specialist, should.
I work in retail, at a big brick and mortor store, and we're ramping up for Christmas. Beginning October 10th, I think, I'll be working overnights, stocking the shelves. It's hard work with a lot of lifting. But until I know, one way or another, I need to be able to pay for all these appointments.
Sigh.

[selmaS]

  Sorry, that u r not getting the right care, and that u do not have the best job for this condition...lifting is one thing they tell us to avoid.....

If there is a way to transfer to a deff position with the company so u do not have to do all that lifting, try to.

With ur ins, can u make appointments with specialists or do u need a referral? If u do not need a referral, start researching Drs in ur area and find one that will give u the care and do all the testing.

[selmaS]

  Hi all I want to say my rant this week will be cabin fever already.....ugh....I hate being stuck inside and this is driving me crazy not having all the things I need to work on my projects....I did however order things on Amazon....one way to shop when u can't get out....lol...

[Viva001]

Im getting an early start to rant too.  Today my dog ran full speed into my head.  I have a big knot over my right eye (the side that always hurts).
Sigh.... I feel like I need to go back to square 1:  dont get dressed, dont cook, maybe dont even leave the safety of my bed.

[selmaS]

  Some days that is just what we need...as I said to one other member...I said  " Plant urself in bed with  a pitcher of water and ur meds..." some days this is just what we need to do.

Sorry u got knocked in the noggin...and I hope u feel better with some rest.

[linnielou232]

My really don't like to rant much but I have something today to rant about. My dear husband has worked each day for the past 3 wks and he just got a call and 3 out of 4 of his guys that work 3rd shift called in so now he is on his way back to work.  It's so flustrating to see he has to go back in after he already works so hard and I'm ranting to those who can go to work and choose not to.  My dear husband needs a break.  Thanks for letting me rant.  Now I can't sleep because I know he hasn't had a break :(
Hope all are having a better day than my DH.
Linda :)

[selmaS]

  I know how u feel....my DH has been working non stop too, but it is a diff reason, he is self employed and a friend of his he use to have help him  passed away unexpectedly this past summer and all the jobs my DH booked that he expected to have help, he is now doing alone, working weekends as well,....this makes it very diff to make Dr appointments and knowing he is not resting properly has me worried about him too....so I know what u mean.