Chiari Online Support Group

Living with a Chronic Condition

Yes, Chiari is a chronic condition, but with good doctors, more and more research being done and education is really important to learn about it. When I was first diagnosed, no one had ever heard of it, including myself.

Here are some of my tips to you all, and love to have more on this topic.

Finding joy, and happiness where I can.

Education on Chiari and learning more about it.

Learning new treatments that come up, and what you all are telling me you are going through.

Learning to accept my condition and learning what helps my symptoms and getting past anger that I have it. Letting go and forgiving.

Chiari usually strikes folks when they are in their 30's 40's & later in life, when we are busy, and having families and careers, so it is difficult to adjust, but, by having a better attitude, learning to be chiari smart and creative. By saying that, I will go a little further, Listen to what your body is telling you. Do not fight fatigue, migraine, or other symptoms, rest, and sleep. That is one of my keys to controlling a lot of the chiari pain.

Don't over do yourself, take breaks and some weeks it takes me all week to do all my house chores, which if you start on one room at a time, you will get it done. Don't try to do it all in one day, rest.

As Shirley says, use your couch!

If lifting is a problem for you and vacuuming, then slow down, I cannot lift, it will really bring on a bad back ache, or a headache, and my back and shoulders hurt, so watch how you much your lifting.

Try to live a healthy lifestyle in your diet, and walk. My neurologist says walk, it is free, it gets you out of the house, it helps your heart, helps your sugar levels, & your mental state.

Try to stay as active as you possible feel like, but don't over do it. I still work at home, and it takes my mind off a lot of my chiari problems.

Don't give in to fear. Many of us have fear, depression, and get down on ourselves. Remember, we did nothing to bring on this condition, it affects our nervous system. But, don't let it make you withdraw from life. Keep on living as normal life as you can.

Don't be afraid to ask for help, meaning, your doctors, your friends & family, and folks that make you feel better about yourself. Learn to lean on them.

Learn to have much faith, stay positive, laugh as much as you can,find joy, peace, and contentment where ever you can and try to always have hope. With more and more technology that is taking place in forms of research, we need to have the hope there.

Folks like Carla, and Teresa B., will be walking on the Conquer Chiari to make folks aware of chiari and raise funds to go for the research we so desperately need.

Chiari can be life altering, but folks, I have met some really amazing folks on here, that just don't give in, they encourage, they keep on trying to live a normal as possible life.

Be kind to yourself, and if folks don't understand your condition, just think of it this way, they really don't understand because no one has told them. Give them handouts, literature, books, whatever it takes to put it in their faces.

Learning to communicate with your doctors and having a good relationship with them. I find that is a great method of them learning to treat me. Since I was diagnosed, my GP has been able to send 3 of her patient to neurologist, and they had MRI's, and they all had Chiari. She knew that I was suffering with the same symptoms as the folks she referred.

Having a good support group is wonderful. This group has some really awesome, amazing folks here, who are very very special.

I would love to hear from you on your helpful tips too.

Blessed Easter,

Love,

Abby

My helpful tip for Chiari and life in general...

Learn to laugh at yourself. Everyone does embarassing things but if we can laugh at them...make light of the situation, you will not only make yourself feel better but others will too.

-Alicia

Amen Alicia.. You have to find the humor in life's dark moments - otherwise you may cry. we don't want that. It messes up your sinuses, makes your face red, and messes up the makeuip - not good! Being positive does lift up up our spirits in addition to everyone else.....I love your attitude toward life.

Hugs

Shirley

Abby

I agree with everything you said. The walking and the water therapy go a long way toward giving me more strength. if I miss it for a few days, I don't feel as well. My husband does all the heavy lifting and vaccuming for me, so I don't have to deal with that. He does the bathrooms too and will clean off the wall and tub for me after my bath. I know I'm spoiled and I am so lucky to have him. It is important to eat healthy, but I struggle with that a little bit. I like all the right stuff, but it does taken longer to fix.....I'm working on that. The one thing that I used to tell myself when I would go through something tough was to "put on my big girl pants and deal with it". I still do say it to myself sometimes and, heaven knows, I have a lot of big girl pants these days since I've gained some weight. It's not really a problem to find some LOL!. I said it so many times during my four surgeries that my daughter bought me a cup with the saying on it......now that we've started the weight group maybe I can finally get rid of them for good!

Hugs

Shirley

HI!!!

Lots of good things said already.....thanks...I try to live one day at a time....trying not tooo dwell too much on Chiari Sx's that arise...which , for me, is sometimes easier said than done.

Like today, my hands are shaking like crazy......no big deal in reality but irriating none the less.

I try to take advantage of the days i feel well, and get out some...on the days i don't feel so hot, i lay low.....

Happy Easter,

Lori

hi all

oooh abby you always start wonderful threads,

i will agree, even though on certain days its so hard to work like that, i think on the day we have to go with it, and on good days, live life to the fulliest, i try to,

i also having trouble asking for help, and when i did it blew up in my face it hurt really bad, but at the end of the day i have learnt that, its up to me and me only, to live my life and do the best i can, and that is alright to not be alright, its alright to cry, its alright to laugh, its alright, to be ME!!!

we all have to learn what works for each of us, we are all effected by chiari, but some of us in different ways, but we all learn our limits and our strengths, we are here fighting the fight of awearness,

take life by the balls so to speak, be all that you can be, love and chearish the little things,

sorry i couldnt help it, but rattle on,

joelene

Jolene,

Your words are wonderful and beautiful. Thank you so much:)

Carla

Nice to have you input Joelene…you don’t ramble!!

thanks carla

lori i do too, lol

A smart Chiarian! I love that, Abby! We also need to be “honest” chiarians! Can we coin the term Smart Honest Chiarian? LOL! It is so true, the more we know, the better we deal with things, I think.

100% agree:

SMART, HONEST, CHIARIAN...

abby your words run true, and also hits home, but in a wonderful way,

I RULE MY BODY

MY BODY DOESNT RULE ME

thats my saying, lol

joelene

Well, Abby, at least YOU ate healthy. I didn't - we ate on the road coming back home from Delaware. I agree with everybody that we have to be informed and be our own advocate, especially since a lot of us look healthy!

Hope everybody had a great Easter. We ate too much, including cake from Carlos Bakery (the Cake Boss guy) in NJ. My daughter and her family went there last week and stood in line for a couple of hours to buy goodies there, so I just had to try it!!!! I had never watched that show before, but now I will. I figured I would have high blood sugar afterwards, but the cakes are low in sugar like the stuff in Italy.....everything stayed normal!

Hugs

Shirley

abby that sounds yummy, its not even dinna time here yet, it makes me want to cook it, but im going for a healthier option, wraps, yummy, and the kids love it, salad and meat, ya cant go wrong,

this is my second day of exercising, ive starting working my core, and woke up this morning and my muscles hurt, so i was over the moon, it felt so good, im proud of myself,

must go, just eaten an apple and hands are sticky, going for a walk around the section, to check fruit trees, been very high wind, and major rain, yah how i love autumn, its soooo pretty.

joelene

hi abby

its the opposite, we be in winter soon, it gets cold, with frosts, but we dont get freezing temps.

before you know it its spring again, autumn and spring are my favouite seasons.

its just right, not hot, not cold.

joelene

burritos, as you would call them, but home made and healthier,

tortilla bread,

cooked meat of your choice, in strips

selection of raw veges, grated carrot, cheese, capiscum, red onion, lettuce, or anything else you can think of

mayo

sauses, of your choice, eg sweet chilli, of tomato relish,

put oil in frying pan, then put one at a time the bread, and turn over, softens the bread for rolling,

arranged cooked meat, and vegeables on the bread, in the centre, fold one end, then fold the other two ends until it together, and eat and enjoy.

joelene

That's sounds amazing, Jolene! I wish I could come up with stuff like that! I can't cook at all. I love to eat though, does that count? Lol.

Carla

i homemade my relish, its so delious, you can put it on anything,

yummmmmyyyyyyyyy........

if you want the recipe im happy to share,

food can be so boring, so i make alot of different things to keep me interested or else i wont eat.

carla you dont need to know how cook for that recipe, i can give you step by step instructions for the meat, so its just right, its sssoooo easy, about four ingrediants

julie....it is mouth watering, yummy

Yes, I'm with Julie on this ...mouth watering!!!!

Shirley, you lucky duck...having CAKE BOSS CAKE!!!!!!!!!!!!!!!!!!!!!!!!!! I love that show..was it amazing, the cake???

TOMATO RELISH

1.4kg tomatoes, blanched, 3 chillies, chopped

Skinned and quartered 1 Tablespoons dry mustard

4 onions quartered 1 Tablespoon curry powder

2 Tablespoons salt 2 tablespoons plain flour

2 Cups of brown sugar ¼ cup malt vinegar

2 ¼ cups malt vinegar

Put tomatoes and onions into a non-metallic bowl, Sprinkle with salt and leave for 12hrs. Drain off liquid formed. Put tomatoes, onions, sugar, 2 ¼ cups of malt vinegar, and chillies into a large pot/preserving pan. Boil gently for 1 ½ hrs, stirring frequently. Mix mustard, curry, flour and ¼ cup of vinegar to a smooth paste, stir into the relish, boil for 5mins, put in blender to purée, or hand wiz until there are no lumps, boil for another 5mins

Put relish into heated jars, seal, and leave to cool.

MEAT GRAVY

500gms of meat of your choice 3 Tablespoons of white flour

(chicken, beef, lamb) ¼ cup of tomato sauce

3 Tablespoons of beef or chicken stock,

2 Tablespoons of white sugar

2cups of water

Pinch of salt and pepper (optional) to taste

Brown the meat,

Take off the element, turn element to low, add flour and stir quickly, put back on heat and stir (takes the flour taste away, this will thicken, add water little bits at a time,

Add beef or chicken stock, sauce, and sugar. Let this simmer and cook though,

Taste and season to taste,

If it thickens up to much add more water,

Note: this dish can be used for casseroles, wraps, by its self,

If you are using chicken, use chicken stock, for all other meats use beef.

If using liquid stock, remove water from recipe.

You can add anything you choose to this recipe, it’s very versatile, eg mushrooms, chillies, garlic, onion, potatoes, carrots,

This is an old family recipe, my mother taught me this when I was 16, ive used it since, its my fail safe recipe, my family loves it, its great with just mince and mash potatoes and peas on the side, good homely winter meal.

Any question please let me know, I love cooking and would love to share secrets

joelene