Chiari Malformation Community
MONDAY'S RANT
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MONDAY'S RANT

"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!!
86 Comments Post a Comment
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620923_tn?1413427272

  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?
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1667208_tn?1333111449
:)  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
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620923_tn?1413427272

  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 : )
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2078936_tn?1341950974
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
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620923_tn?1413427272

  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.
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thank you i will do its less scary than googling anything lol xx
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3060676_tn?1371241540
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!
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620923_tn?1413427272

  My rant this week is waiting...I hate to wait for Drs, for answers and for someone to drive me newhere...ugh
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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
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620923_tn?1413427272

  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
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  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....

  
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*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!
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620923_tn?1413427272

  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 : )
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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
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620923_tn?1413427272

  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.
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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.
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620923_tn?1413427272

  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 : )
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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.
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620923_tn?1413427272

  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.
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620923_tn?1413427272

  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...
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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.
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620923_tn?1413427272

  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.
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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 :)
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620923_tn?1413427272

  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.

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1827123_tn?1383868876
I can relate Linnielou, mine works way to much!  Of which I feel guilty knowing that he is motivated by $ to pay the bills since I am not working.  He was suppose to work on Sat. but actually told them he couldnt make it...he was determined to get me to the chiari walk in our area. He insisted on us going, which was good because I was ready to throw in the towel- seemed liked to much work to get there. I am glad we went, met new friends in my area with chiari. But now he is back to trying to make up lost hours. Wow, how much chiari effects my hubby keeps me forever grateful to his hard work and care of me!
My rant is its time to go grocery shopping! I HATE shopping of any kind, much less the grocery stores!  My kids are on a 2 week fall break, so that means I will have to stock up the cupboards!  I have one of my girls going with me to do all the work, but that means I still have to think!  Not so easy going in and out of stores, driving, and those stupid lights!! :/ GRR....Hope everyone had a wonderful weekend and a great Monday so far!
Jiggle
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620923_tn?1413427272

  Hi all what is ur rant this week?

jiggle I hate shopping too and for all the same reasons....but this week I will continue on my rant I was on over the weekend.....

1- hairdressers that leave a location and leave u high and dry...ugh

2- people that prey on the elderly....

  I had 2 things happen last week that were upsetting....

1- my hairdresser is gone, so I have to rey and find a new one, again and I hate this whole process.....

2- my parents were robbed by men pretending to be city workers for the sewer and water dept ....it is just so frustrating to have to deal with things and people that would do this....sigh
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That's terrible, what happened to your parents!   Were they hurt?  They must feel so violated.  (I had a crazy neighbor who had a grudge against my extensive garden & poisoned it.  I am Still not over it!).

It really is raining here today, and I am a bit down.  I feel that I have to vent about "medical professionals".  We all have had--the royal Chiari runaround--but I feel angry that they're not that smart!!  In general!  If they're not arrogant going into their field, they are coming out.

Most people I know avoid doctors if at all possible, for various reasons (the time/expense, let the body try to heal first, fear, mistrust, etc).  I don't doubt that there is a minuscule % who are true hypochondriacs, need attention, or are "drug seeking".   But the medical people act like we Love them, just can't stay away, have no lives elsewhere, & have no problem paying for the privilege of seeing them.

I've been stewing about this since my recent visit to the ER for a snake bite.  I did not want to go, but no one else would see me because "snake bites are a medical emergency".  Then to reluctantly go there and not be believed that I was bitten?!  Really?!!  Yeah, I had nothing else to do & was lonely, so I just I'd drop into the ER for some attention.  I also didn't feel that I had quite enough medical expenses, being 3 mo. post op.

I've had a whole lifetime of this condescension, dismissiveness, close-mindedness, etc. from them.  Ive learned to do my own research & trust my own instincts.  
The only change I see is that women have more options for childbirth (and I was one of the people who fought for that; it was still very backwards in 1977).  

But what really bothers me the most are the two nurses in my family; it really makes me wonder why they went into the profession.  To make themselves think that they are wonderful people?   Because it is not out of love.  My brother never believed I was sick--because there was "no proof"-- and never offered an apology or even well wishes when there finally was proof.  We're pretty much estranged anyway, but recently I was horrified to hear him speak  w/derision about his ex-wife having to go to the ER for vertigo.  

Even worse, I think my daughter's graduate NP program ruined her.  She doesn't want to know anything about anything she hasn't learned in college.  She thinks I'm a smartypants (or showoff) or something, trying to impress people with my medical information.  I would much prefer to not have earned an Honorary Degree in Chiari malformation!  (Or one in snakebites either, lol.  She didn't even want to learn that it's pointless to go to the ER after 6 hr--and this might be important in her profession!).

I can count on 1 hand the true healers that Ive encountered, and still have fingers left over.  I'm very grateful for them.  

This is my longest post, & it's a rant.  If you've read this far, here's what the Sicilian immigrants used to say:  "don't trust banks and don't trust doctors".
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620923_tn?1413427272

  They were not hurt physically, but I am not sure if u were aware this past Feb was the 1 yr annv of a huge gas explosion across the street and their home was damaged and my mom's friend was killed...so this just added to the not feeling safe in their own home...I have pics and links to that story in my profile page....

  Viv...I so understand how u feel about the medical profession and their outlook  or view of patients....and do have this to say about ur DD she is still in school?...I ask bcuz it is hard to send them to school where they r taught to go by the book...and then u r asking her to listen to u and what u have learned which is outside her books....I know as I did go thru this with my DD...but, mine did come around as she would tell me a situation and I would say how I would handle it and get this, similar to what the books said...hmmm and I didn't read the books....so, my DD does come to me for answers and she knows and trusts what I have to say much of the time......I am sure ur DD will have an eye opening experience and realize just how much u know...but it is part of the natural life experience for them to  tune us out....

Now ur brother on the other  hand, he is just being obstinate...I have a sister like that, and guess what...her boss's niece was just dx and guess who she is turning to for help????? Yeah, until it hits closer to them do they begin to understand just how this is really affecting us. Sad and I know we should not have to deal with it....but I really feel bcuz we do, we r stronger and can.

We just need to vent once in a while to someone else that understands.....

  ((hugs))
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I feel much better getting that out of my system!

That's just tragic about your parents.

We only recently found out that my DH's stepmother was the victim of a scam.  He never inherited anything after she died; I wondered about that but it was NOMB.  she had her own biological children, but still, there were some personal items that could only have been of sentimental value to my DH.  
She was terrified to go into a nursing home, so apparently "home health aides" took care of her, swindled her out of her condo, possessions & insurance!
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  It is scary as my parents were taken by the construction workers that were to be fixing the home after the explosion......so this was not the first time and it just makes them feel like incompetent fools,.....nothing we say can change how they feel....and just going out the front door is a reminder.....

I am just worried they made copies of  my moms keys and will come back....
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  My rant this week is .....I have to leave NY today : (

I could stay a few more days as I am loving this.....lol....so I am sad to think I have to head back to PA sometime tomorrow.....
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Im at the ER, this time because DH fell & needs x-rays.  I cant believe the bad luck lately.  Hard to recover even under the best of circumstances.
Sigh....
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Oh No! I am so sorry! I hope DH isnt to bad off.  Put your feet up while waiting. Let us know how it all goes.
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5 hr later & still no cast.  He broke both tibia & fibula near ankle, tripping on a rug.

At least I can admit to feeling sorry for myself here.  :)
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Well, I learned several things today, one of which is that ibuprofen is contraindicated for bone healing.  This was news to me, & i had to wonder if it delays PFD healing..
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620923_tn?1413427272

  I do not think so as we do have swelling too, and we need to reduce it, it may slow healing down but will not prevent it......

  

I hope u r having a better week this week : )
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Another rainy Monday here!!! Good day to complain, really could use some sunshine!  Hoping to walk if it is not raining... Dr. says the one thing I can do is walk... my driveway is waiting for me :)  Just need some sunshine to go with it, don't want to be cold.... another thing to complain about is how much my healing head itches.... itching is HORRIBLE!  -zygy
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620923_tn?1413427272

  I do remember the healing Itch....and it is bothersome to say the least, but at least we do know healing is going on as well as our hair growing back in : )

I pray u get some sun to get out walking, that is one of my favorite memories from my healing was my DH taking me and my walker to a nice park to walk around.....it was very nice to get out and to spend time with him at the parks I use to take my DD and her bike when she was little <3
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My rant is the weather too. I'll trade our 90 degrees for your rain!  We had a couple of cool days, but back into the heat again.  Pressure in the air is messing with my head,( and a few other Chiarians in the area) a weekend of pounding and it continues....and Monday is the landscapers day to tiddy up the neighborhood. They seem to be adding the reseeding and prep to the grass on top of the normal. My head is not liking all the noises they are making :/    Thankful for how pretty they make everything look, but wish they could use quieter tools.  This weekend it was the crop duster, he was a busy guys buzzing our roof around 4 am on Saturday and 6 am on Sunday.   Earplugs going on the grocery list for this week! LOL!
Have a wonderful week!
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620923_tn?1413427272

  Well it was not raining here, when I wrote my other post on this thread and it is raining now...so a dismal day......

My poor DH had a bad day yesterday I decided it was a good day today to bake some brownies to help lift his spirits when he gets home...nothing better on a cold damp dreary day then a housed warmed with the smell of fresh baked brownies.... : )
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well its monday and its raining so i guess that means time for a more awful day then normal:(
molly
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620923_tn?1413427272

   Molly I am so sorry...the rain and cold does add to the discomfort and I know urs is above discomfort.....wishing there was something I could do.

  Sending u healing MoJo and prayers ((hugs)) <3
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620923_tn?1413427272

  My rant this week is sometimes people get angry and I never seem to know y.....and I wonder is it my chiari that makes me unable to see what is going on around me?...hmmmm....sigh.....ugh....oh well,....better days ahead....
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My rant is that it really stinks when you realize that there will never be a day in your life that you are not in pain....that is a tough pill to swallow.  After diagnosis you keep thinking one day you will wake up and things will be as they were....a year later I am realizing with EDS that is simply not going to happen.  
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620923_tn?1413427272

  Mel,

  I know just what u mean....sooooooo many think go have surgery and everything will be fine...not so....just the change in weather tonight...it got colder again and my fingers hurt like someone smashed them in a door or something.....sigh,....I am 3 yrs post op and feel u there...
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620923_tn?1413427272

  Well my rant this week is the fact I did not get to see my DD and Lucy this past weekend...Sandy and my SIL's work made those plans crumble
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620923_tn?1413427272

  Well my rant this week is the fact I did not get to see my DD and Lucy this past weekend...Sandy and my SIL's work made those plans crumble
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In the last week, I have received not one,  but two unpleasant emails from "friends".  Both could fall into the category of "my life ***** & you don't understand".
Needless to say, both are healthy & both work.  

Like I need this s---.

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I should add that I have more empthy & admiration for the Chiari Warriors here than I do for all the drama queens--& kings--out there engaged in the world.
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620923_tn?1413427272

  I know and understand what u mean, but not having Chiari they do not realize what we go thru and to them their issues r BIG issues...and may not understand our lack of understanding them either.....I think to get understanding we have to extend understanding....JMHO....

I agree it stinks and s----, but I really think we r stronger and can handle more then they can <3
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Selma, I am so sorry your weekend got cancelled...I know you were looking so forward to it!  Great pics tho!
Viv, I am so sorry that you have "friends" like this...you are right, you do not need this right now! I count my blessings for your opinions and outlook on here, as it has helped me many of times!  
my monday rant is really a weekend rant...I made light of a situation about my life and my family history...and well, it set off fireworks! I was out on Friday night to enjoy an evening with DH when I recieve a message from my aunt and uncle which proceeded to inform me of how highly insulted they were by my comment, and continued to say how I dont get over things, how I need to stop placing blame on others, and how I have victim menality, etc.  I went instantly numb. It ruined my entire weekend. I even offered avery "high road" public apology, to which they have not responded...but not only did my symptoms flair up, but I am truly feeling horriable about myself.  I personally feel like the most optimistic person in the family, as my entire life has been about making lemonade out of the lemons...but now I just feel like maybe I dont really know who I am...in more ways than one :/  

I am beginning to feel like everything I say and do comes out differently than I intended and maybe its safer to just keep my mouth shut...I just hate the feeling I have inside me now, have felt defeated and sickened to my stomache for days now.
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620923_tn?1413427272

  I would say try to let it be like water on a ducks back...it is perception, I learned this yrs ago, I was HR at a retail chain and during Orientation I would get a few that said I was mean during the info session and others that enjoyed the way I presented it...y, bcuz everyone will perceive what u say and do differently no matter if u r singing songs of love and smiling they will see doom and gloom, it is more a reflection of them and not u !

This was exactly how I began to feel to and life is too short for some near sighted people to keep me from enjoying myself...too bad they only see the negative. As long as ur DH and u know what u meant...no worries...forget them it is their loss.

  If u were a negative person, I think I would have noticed...and trust me u r not.  <3 ((hugs))
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Selma, Thank You! You have me in tears...

Your right, its other peoples perception that I am getting hung up on. I dont want that to be how people think of me or see me. It just hurts more when its family, especially since I do all the reaching out, and then to have them comment such things. If it were a stranger, or even a friend I would be able to have a "whatever" attitude...but family somehow knows how to cut deep dont they? My husband told me that he thought it sound like there guilt coming through on their comment, since everyone wants to sweep the issue under the carpet and not speak of it like it never happened...all I ever wanted was an explaination...being told you are not your fathers daughter by his family because he couldnt face me (at 32 years of age) seems like something that needed a discussion....but now they see me as someone that wont leave things alone. Hello? I didnt bring this up out of the blue, and then say forget about it!
AAAHH! So frustrated!
But thank you for saying such kind things, its what I needed to hear! Thank You, Thank You!!!
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  No worries, I say them as I see them and I have BTDT...so I know how it feels...as I say on many that ask about what to expect with surgery..ask 10 people u will get 10 diff answers....

The same thing if u walked into a room and made a comment, then ask the 10 people what they thought u said and how u said it....u would get 10 diff answers....u can not do things to please others....u know ur intent and know what is in ur <3....so, u have to let those neigh sayers go....

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I have come to realize that people who expect & *demand* sympathy--& have tantrums when they dont receive it!--well, it says more about them than it does about me.

People who are "untreated" can be very hurtful. (I never play the pissing game-- "my life is worse than yours"; I might & would lose here :-/ ).
The people who have hurt me recently have been jealous--can you believe it?!!
I actually sent 1 of them a book for no reason, because I was tired of feeling sorry for myself.  I suppose that they have no clue how difficult that was to fit into my already overwhelmed life.

I had to memorize the poem "If" in 7th grade, which still comes in handy today.  I hope it helps:
http://www.poemhunter.com/poem/if/
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  Great poem Viv...fits all too well what so many of us seem to go thru with family and or friends that just do not understand.....

  As I say u can lead a horse to water.....lol...
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  Hi all well my rant this week is the weekend went by too fast....my DD and her DH  and of course little Lucy came for a visit (hence my MIA from the site, and still some after math of Sandy)

  We may have another storm this week...so, I pray for those that lost so much already that they can get themselves settled b4 the weather turns again,.
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Sort of a weird /lol rant. Saturday I was counting the hours left on a five day flat on back lumbar drain to be clamped on Sunday morning. At bedtime I realized the end of daylight savings time and that there would be an EXTRA HOUR ON THE DRAIN, UGH.
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  June, I never saw that xtra hour as a negative b4,....sorry...I was looking forward to the xtra sleep...lol...which we all need....but never thought about how it could prolong something like this.....

How r u doing now?Did the drain work?
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  Hi All what is ur rant or do u need to vent about this week?

   I can  only complain about this drastic weather changes, we went from temps down in the high 20's to the 60's....and it is these changes that affect my EDS....so my joints r hurting....how r u all feeling....???
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my sympathetic & parasympathetic nervous systems are not on speaking terrms.  I was hoping that they would get along better after surgery.
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  Well it takes time Viv....all in due time....patience....and rest, rest and more rest and b4 u know it...u will be feeling better : )
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  Hi all....went to an intervention for my nephew...and was left with a HA...although we did get him to agree to go inpatient...yea !!

SO my rant is why can 't they help him figure out y he is using instead of telling him y he should not...that he already knows...I really feel he may have an underlying issue and is self medicating and it got out of hand....big time....sigh....
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  Ok my rant is still about my nephew and insurance companies....ugh...he needs to be in patient and finally agreed to go, but ins denied it....sigh.....why must these things be so difficult?
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ok im ranting today! sooooo tired of hurting im just soooo fed up with it . ok im done now lol
molly
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what Molly said.
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@ Molly I know, it seems never ending and I pray u get some relief soon...and u get a date for ur next bolt monitoring,....and they have answers after that.

@Viv- Sorry u r still in pain too....sending prayers ur way for relief....cut back on what u r doing and allow ur body to heal a bit....
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Selma, you nephew is lucky to have family fight for him. If they cant get him into an inpatient, is there anyone available to stay with him for an extended time? I ask because years ago, a friend I know was desperatly wanting to kick a cocaine addition. he didnt have insurance and his family was at the end of their rope. Their solution came in the form of a wonderful friend that was willing to keep daily meeting with him...sometimes dragging him out of bed, throwing him into a shower, and then sitting down with him each day. This friend was faithful, and had it not been for Mel helping daily the addiction may have never been broken. The drug addict is now a pastor for the last 24 years and helps support many ministries across the country and the world.
I know this isnt ideal for everyone, but sometimes I think we just have to think outside the box to find a answer. I truly hope an answer is given to your nephew soon. Breaks my heart that he is asking for help and our system is denying.
Viv and Molly, so sorry that this Monday has you in pain. I too have been having a difficult time the last few days...but realize unlike you- I have done this to myself. Working is taking a toll...and these crazy christmas shoppers!  So grateful for 4 days off...my body needs time to recover!
Off to find my heat pack and some advil!
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  Thank u so much for ur kind post and suggestion....his older brother is with him right now....and they are still trying to over turn the decision. I offered for him to come here, but my DH said no as I have all the meds in the house he is  having issues with...I got a box and they r all in one place....but, he is a big guy and if he loses his temper I could not hold my own against him...he did get in my sisters face already...drugs do things  and make the person do things they normally would not do....

But thanks again, I really appreciated ur kind words and suggestion.
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Smart Hubby! I wouldnt suggest that situation either, yes - they do make people do things they normally would never dream of doing! Glad the brother is with him...sounds safer. Sometimes a non-family member is good in those situations as to not cause a riff in the family...tension runs high in those cases and sometimes they feel like family is just ridiculing them...again, all the drugs taking over the emotions.  I will be praying for them. Keep me posted on how it goes.
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  Thanks so much and I will....it is so sad he even took my mom's pain meds at Easter...we had no idea at the time, but we know he  has no qualms of taking from his grandmother....so....I hope we can help get him turned around....my other concern is for my sister as this is killing her....this is her baby boy and her pride and joy....not that she doesn't care for her other 2 boys, but this one has the potential to do sooooooo much and is throwing it away. I deff will keep u posted.
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  HI all what is ur rant this Monday?....I really do not have one for myself.....but for all those that have not gotten the proper care, or the care they received may have come too late....

  Sending prayers to all Chiarians suffering.
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  What no rants today? It is Monday right?
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I would love to have a day where I didn't think about Chiari at all. I'm feeling insecure today because I'm in job search mode but I'm not really sure if I'm up to life with a full-time job. I'm four months post op and doing pretty well. I know I can handle working, but I don't know what else I'll have energy for. I hate the idea of having to rest a lot of the time I'm not working. It's been nice being able to cook, spend time with friends and my partner, and take care of all of the little things that need to be done to make life work...I'm so worried that all of my non-work activities will become chores again...
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  Well u got back to work,....that is something of itself....and only 4 months post op...wow, I am amazed!

I am sure if u take ur time and slowly build up what u do, in no time u will have increased what u do with little to no after effects....it is amazing to look back at the recovery process and see just how far I have come and how far one yr makes and continues to make.



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I broke into a fit of yelling and crying yesterday. I was just so tired. Tired that I don't have help around the house, that my kids are not listenning to me, that I'm always so tired.

I hate when I'm all emotionnal like that.
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  BTDT many times so I know just how u feel and I feel an episode coming...lol... sigh....I hate having to rely on others to get certain things done and they feel there is plenty of time, but I am the one that has to do it,...it does not seem to sink in...or it does but falls out along the way....I am not sure....

But it can be dang frustrating.
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What a great thread. I ditto a lot of what others have posted here. I would say my rant about drs is if they dont understand something, instead of simply saying they dont know they put it on the patient - its just depression or like my first NS told me "to tell yourself ur problems are not caused by ur back and u will get better. Oh and get back to work bc you are just too young!" Very few drs actually take the time to listen thoroughly. They hear a few symptoms and just want to throw meds at you and move on to the next patient. And most dont like being questioned.

People that cannot see these invisible disorders and arent really knowledgeable about them are just ignorant - meaning they dont know any different. An actress Jennifer Esposito suffers from a very serious case of celiac. Its in the news lately as CBS put her off work from the series Blue Bloods and will not release her from her contract to work elsewhere. Instead of fighting, shes thanking CBS for what they've done so she can now be an advocate and teach ppl about celiac. Of course being an actress she is more able to do this as opposed to just a regular person  She was on Dr Drew last week and he was so dismissive of her. It seems all these diseases/disorders that arent mainstream ppl just dismiss. I believe we have to stay strong and stick together in this so we can bring awareness to it. Dont give up!! I told my NS i would be happy to go around to drs ofcs to educate drs n staff on chiari and related disorders just as a drug rep does. I was humored but could tell that would never happen.

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In the book The Four Agreements it states 1) Be Impeccable w Your Word -- speak w integrity. Say what you mean. Avoid using word to speak against yourself or gossip about others. Use the power of word in the direction of truth and love. 2). Dont Take Anything Personally - nothing others do is bc of you. What others say and do is a projection of their own reality. When you are immune to opinions and actions of others, you wont be victim of needless suffering. 3). Dont Make Assumptions - find courage to ask ?s and express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With this one agreement you can completely transform your life. And 4). Always Do Your Best - your best is going to change from moment to moment. It will be different when healthy as opposed to sick. Under any circumstance simply do your best and you will avoid self-judgment, self-abuse and regret.

Of course some are easier to read than to put in practice. #2 has helped me immensely especially with family members who flat out told me there's nothing wrong with me. Im just a hypochondriac.

One final thing about the nephew w addiction. If he cannot get into a treatment center, a call to a local AA office can put him in touch with people willing to help. Some may even come to him.  If alcohol isnt the problem they should still be able to give information on where to get help. Most addicts/alcoholics have a better chance helping someone than a family member, therapist, clergy, dr and sometimes yes even treatment centers. If he's ready to get help DO NOT wait bc of ins problems. Help is available. Also his mother or family members should seek out an Al-Anon meeting to get help for themselves and learn how best to help him. Addiction is a family disease.  Sorry for super long post.
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Thanks for sharing these words of wisdom....it is true easier to read then to  put into action...but I am sure we all try.

And thank u for the thoughts for my nephew....the thing is it is over $3,000 a week to get him the help the Dr suggested....he was in patient b4 but not the right facility as the counselor was not able to get him in, now that he no longer see her, but a Dr he is able to get him in, but now the ins refuses...his last stay was 10 days...not long enuff...and not the right treatment...so, we r trying he goes to counseling... my sister and her ex go as well...they include the family....he was to go to Al anon or something similar and get a sponsor which he has yet to do...but we encourage him to all the time....

He was willing to go, only bcuz my sister said he goes in or out on his own as she can not take this ne more....she should have pushed this hard sooner...IMHO...but it is her baby and she has to do what she feels is best..

He knows he needs to stop, problem is he also likes doing them....

and he will steal from ne one to get what he wants.....
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Unfortunately dear it sounds like he has crossed that fine line where he is no longer able to control his addiction. Therapy alone will not help. He needs others that have been through it. They understand him. They came through it. They can help him understand and give suggestions to him. He may be more apt to get better. Please have him call NA/AA central office. They can get people to come see him and start working with him... But only IF he is ready and willing. If he tries for family, it wont work. He has to want it. The sad truth of addiction is that some people have to die to get sober. Im sorry if that sounds harsh but its the truth.

Please know most drs only get 4 hrs of schooling in addiction. If they work in the field and they've gotten their job due to studies chances are slim of help. Anything is possible. I believe in miracles and have seem them happen in this field. But he's better working with someone that has walked in his shoes. A therapist thats sober.  Again. He has to want it more than he wants the escape the drug gives him. More prayers are coming on this issud for you and your family.
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One more thing. Al-anon is for family and friends of alcoholics and/or addicts. He would need AA or NA. AA is probably better to start at even if alcohol is not his drug of choice. There are larger numbers of sober people and many have experience with drugs, and mental illness (which leads a lg number to use).
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  Well he said that exact thing he did not like one of the counselors bcuz they were not recovering...they had no idea what he was going thru...

He has had both...and found fault with both...

I am sure it was NS he was told to go to after he was released from the last time he was in.....

He claims to have anxiety that his Drs have overlooked....and we r trying to get a Dr to see if he does, he claims he had to resort to self medicate....

As for dying being a way for him to get sober, it is something we all told him during the intervention, my older sister made him hold her son's ashes and told him how she did not want her sister to go thru what she did ( we lost my other nephew to a MVA yrs ago)

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Geez your family has been through a lot. Early on he will find fault with everythingand everyone.  A recovering therapist will see thru the games he tries to play bc he knows the games. He will call him on it which will tick off your nephew. Its best to just let him vent and let it go. Anxiety is common for addicts/alcoholics esp when detoxing  or newly sober.  Feeling sober is uncomfortable in the beginning  users don't like to feel  they like to escape from feelings  His claims of anxiety may be real but may also be a ploy for more drugs. Drs rx xanax like candy. Its highly addictive and can be just as hard as getting of heroin.  Its in the same family. Klonapin stays in the body longer but can still be addictive. He just needs to careful. Blessings to u n urs.
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  Thanks,..u got his # all right....lol.. we all can see he is playing games....and it is all RX meds he is taking, he stole my mom's pain meds and then who knows where he got the others....

I hope he gets thru this soon....thank u again.
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Me too sweetie. It just takes time. As for the rx drugs. Theyre very easy to get. My kids tell me all the time about kids in their schools using  One friend of my sons even admitted to me he was selling for a while  There's also a drug called bars, which these kids can get very easy somehow  Bars are extremely high doses of xanax in one horse sized pill. Another name is zannies. Same thing as bars. Anyway if you have other ?s u can msg me. Dont want to take up the whole rant thread. Lol. Have a great night!  
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