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Chiari Malformation Community
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620923 tn?1452919248

Top 10 Things I Love About Having an Incurable Disease...

Hi All I got permission to post this from Diane-

I encourage u all to add to this with what u love about having an incurable condition.

Keep in mind this is all in fun. <3  : )

by Diane Bash Simmons on Friday, April 29, 2011 at 2:46pm

1. I love that if I really don't want to do something, I can 'forget' and not be questioned!

2. I love meeting new people... it's amazing how cool old people are in the waiting room of the drs office!

3. I love the staff at my pharmacy.

4. I love all the new friends I've made in support groups that understand and appreciate my sick humor.

5. I love cracking jokes around my family who don't understand and making them feel uncomfortable.

6. I love going into the bathroom and forgetting why I went in!

7. I love losing feeling in different parts of my body.... it makes for less painful tattoos and piercings.

8. I love the honest acceptance I recieve from my children who know all too well what this does to our family.

9. I love being different, and having a rare disease just proves I am!

10. I love knowing more than some doctors do, in some situations, and proving it when they finally Goggle it.

11. I love that I can write 11 reasons when I titled this 10....

12. I love that there's yet one more reason, and it's not spelling Google right in #10!
18 Responses
Avatar universal
1.  being able to laugh at all my quirks, after all if could always be worse.

2.  loosing feeling in diffrent parts of my body - draw blood from my right arm any day!

3.  the look on doc's faces when they don't want me to know they are totaly lost - and making them squirm before I tell them I know

4.  sharing my sick sense of humor with my sister who also has a chronic disease, and watching those around us try not to stare

5.  the way my kids take all this in stride, like everyone has a mom like me to "look after"

6.  loosing my self consiousness - after so many awkward fall I've come to the conclusion I was put on Earth to amuse people

7.  helping others loose their self consiousness - ask me that question, go ahead and laugh - I am

8.  letting go - I can't controll this, however this affects me is how it affects me I'll deal with it if and when it comes to that

9.  having others for support, it amazes me how we all handle this chronic illness stuff
620923 tn?1452919248
COMMUNITY LEADER


Great thanks for sharing ur thoughts on this topic !!!   : )
Avatar universal
1) meeting new people, i cant do any of my old hobbies and activities so i have met lots of new friends trying to find new hobbies that are no contact

2) i got to buy a sword

3) i never have to drive, always hated driving, so now i get anyone else to do it if i can

4) it gave me a real reality check about whats realy important in life,

5) I used to be a DNR, i though i wouldnt want to live if i was mentaly or physicaly compromised. Now i know i want to live regaurdless of how capable i am. Thats probably the biggest and truest one.

6) having this happen (get worse when it did and make me force an investigation) when it did made me stop training for a event that could have left me brain damaged/paralized with this condidtion. im gratefull i found out and stoped and possibly prevented a tragity.


thats all i can think of to spin positivly...
620923 tn?1452919248
COMMUNITY LEADER


Thank u for sharing ur insights.....can u expand on #2?


  lol

   "selma"
Avatar universal
Haha... I took up Iaido ( japanese samuri sword lessons) when I had to quit ji jitsu. Its no contact, so I can safely still practice martial arts. Always wanted to know how to use a sword, now I'm learning. :)
620923 tn?1452919248
COMMUNITY LEADER


oh ok....u had me there with that one...lol....can I ask, doesn't the sword have weight to it?

I would think that would be diff too moving something like that around......???
1435895 tn?1304294841
1) I love the fact that I have had to learn patience... something that I have been lacking for years.  Still a work in progress but I had no choice.

2) I love the fact that this has brought me closer to God and I have learned to rely on him since I cant do this by myself.  

3) I love how this has brought my family together and my kids have stepped up to the plate to help out.  

4) I love how this has shown me the true friends and who I can rely on.  

5) I love that I do have a new outlook on life and am waiting to heal so I can "live again"

6) I love that this has given me a new passion for what I want to do next in my life.  

7) I love the fact I have had to cut my hair short... it was something I should have done years ago.  

8)I love all my new chiari sisters I have met thru all the support groups.  What an amazing bunch of ladies.  It is amazing the hours spent supporting and loving each other.  We immediately have something in common... what an easy way to make new friends.

9) This kind of goes with #1 but it has forced me slow down and not take life for granted.  I take great joy in things I used to take for granted.  

10)I am also learning to let go... since as mentioned above I have no control.  This is really hard for a control freak.  
620923 tn?1452919248
COMMUNITY LEADER


Love all 10 on ur list....very good to really take a look that there can be positives within a negative situation. : )
1451338 tn?1413478623
I love that when I'm saying things that make absolutely no sense...the people that love me the most understand exactly what I'm trying to say!

I love that I don't even have to say "mom has a headache". My kids just know that I do and one of my daughters thinks she can "cure" it by rubbing my temples!

I love that I'm REALLY NOT CRAZY!!!!

I love that when people say that they know how I feel because they get headaches too, I get to say that because of my headaches I'm going to have my head cut open...their faces are priceless!!!!

I love that the word "zipperhead" makes my sister squimish!!! hehehe! I have a sick sense of humor!

I love that in the first post...I didn't even notice that the word google was spelled wrong in #10 until it was mentioned in #12! LOL!

And I love love love that I have this group!!!

620923 tn?1452919248
COMMUNITY LEADER


Stephanie...u said so many I wish I had as well...very true on so many...lol....and funny I also did not notice the misspelling  of google either....

SO glad more and more of the members r seeing the positives : )
Avatar universal
The sword only weights a few pounds, swinging it around is not a strain. plus i was a competative athelete in excellent physical condition before this crap got a name.  It's my understanding that the primary problem with chiari is blocked fluid and therefore increased cranial pressure. that means up to 20lbs is safe. I truly do not belive that no exersice is good for anyone regardless of illness. you just have to do what you can. an unhealthy body is much less likely than a healthy one to pull thru surgery well. I am not a sick person, I'm a healthy one with a desease that I'm going to fight with every breath I have because it is in my nature to do so. besides, I exercised hard for years with this condition, sure i had my drop attacks and sure i got dizzy and sure I got headaches, sure it was hard, sure i puked. most days i feel like I've been hit by a truck. All of that never killed me. I stopped because I can no longer handle that level of exercise (lest face it most of the population cant handle that level of training) , that dosent mean that none is the answer.  I refuse to let this stop me from living. I may not be able to do everything I want, I've had to make some changes, but I'm still living my way.
620923 tn?1452919248
COMMUNITY LEADER

  I am glad to hear that u r still able to do that much...I pushed myself to do a lot over the yrs, but lost upper body strength....lifting a 1/2 gal of milk was diff.....some days a glass of water if too large was too much....and I did my share of work, I used hand trucks and moved heavy items daily....so, I found it very diff ....and I would say the last 10 yrs was a downhill slide physically for me...regardless of what I did or tired to do.....age may have something to do with it as well...who knows...but I am sure it is the related conditions I also have that play into  what I can do at times.

  I agree, it is best to keep as active as possible.

   "selma"
Avatar universal
1. I love that my parents are more sympathetic and get me what u want now :)

2. I love that I can now have iced tea WHENEVER I want.

3. I love that I don't have to do PE anymore

4. I love that I have met loads of new people here who going through the sane thing as me

5. I love how everyone here gives eachother support.

6. I love how this effects my concentration, so my school mentor let's me come and sit in her office during lesson time

7. I love howt teachers offer me extra time to study for my exams

8. I LOVE how when my teacher asks me why I am talking or why u havn't done my homework, I simply reply 'there's something ring with my brain." :)

9. I love how my friends are so supportive, and the ones that arn't, I now know arn't my true friends

10. I love all you guys, and how you are all so supportive and nice to me, when I have never met you before In my life :D

'boo' xx
992677 tn?1537672503
I love being able to literally forget the stupid things that I do in life. Well, yes forgetting others misjudgements as well.

But I hate going to the store and forgetting what I went for. Writing a note doesn't work as I often forget the note or that I have it.
Avatar universal
1. I love that my school mentor let's me come and sit in her office during lesson times invade it gets ' too much' for me

2. I love (like itsy1 ) loosing feeling in different parts if my body and taking my anger out by squeezing it and I can't feel anything

3. Sharing a sick sense of humor with my mum and watching my whole family cringe!

4. I love that I have found out who my true friends are.

5. I love how my parents are being EXTRA nice to me and buying me things

6. Love how I gave met loads if lively people going through the sane thing as me.

7. I like missing parts of school for appointments.

8. I love how I just dint do much homework anymore.

8. My friends are realy sympathetic and i love watching them struggle to find unoffencive terms to talk to me about it :) nice.

9. I LOVE how whenever my teacher asks my why I am still talking in class, I can simply reply 'there's something wring with my brain.'

10. I love all you guys for making my life a whole lot easier! :)

11, I love how I can find this many things that I love about my desease/ disorder

;D
boo x    
4661387 tn?1359418798
My dear friend's in Colorado, their son Zane who is 8 just had his first surgery after being diagnosed with Chiairi just 2 months ago. He is my sons best friend and his Mom is one of my best friends and she has stage 4 Ovarian Cancer. Thanks for all the things you love about your disease! I will share too, I am starting to gather my thoughts. I have MS.
Mellie~
4661387 tn?1359418798
I am not part of this forum as I have MS and came into this forum because my friend's son has recently been diagnosed with Chiari. However I would like to join in the 10 things I love about my incurrable disease:

1. I have a stable relationship with God, I put my trust in Him and know that His love will never fail me.

2.I love that my husband learns right by my side so on the days I have no idea what I am doing...he does and he knows most of my needs. (He just bought me a bunny to cheer me up)

3. I love that my 3 boys are full of fun love and laughter so when they are pushing me thru a store in my wheelchair and stutter out a few bad words over a spilled drink my 12 year old say "oh excuse my mom, she has teretz syndrome" oh my goodness I thought I was going to fall out of my chair.

4. I love that I get to be a stay at home Mom, and even though my house isn't perfectly kept and I don't always feel good enough to get up, I still get to be here when my kids get home from school!

5. I love that MS brought my family together! Family is the most important thing to me under God!

6. I love waking up to different symptoms daily...just wake up and smile because you get what you get and you deal with it!

7. I love that "letting go" of things is the most difficult thing for me ever and that I am working on it proudly.

8.  I love that my hubby bought me a nice vehicle that all my friends drive me around in..like driving Miss Daisy...but Driving Mrs. Mellie~

9.  I love to help others learn about their body and what is happening with it, what to expect and how to cope. Teaching others helps the teacher with coping methods as well.

10.I love the people I meet everyday! People in support groups, doctors offices, pharmacies and shopping centers. People share knowledge and knowledge is great!

This was a really fun post and I am going to share mine in the MS forum as well. Thanks for letting me pass through. Best of luck to all of you. God is great and we are His children with His unfailing love!
Hugs~Mellie~
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Chiari and MS have similar symptoms so we can related to how u feel.

I hope u keep in touch about ur friends DS....and I hope u can encourage her to join us as it helps to talk to others in the same situation and we do have parents  and care givers of Chiarians as well as those of us with Chiari.

We even have members that have both Chiari and MS.....and some misdx'd with MS and it was Chiari.....

So u can see how they can be similar  in how they appear....

Feel free to pop back when ever u feel  like it : )
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