Update

 

I just got hungry! What did I pick to eat? NOT the bologna! I picked some chicken and brown rice stoup I made about 2 months ago. It had lots of veggies in it with the chicken and rice. It was cooked all day then frozen in small servings. I must say I hate brown rice but it was good this time. I think the cooking time and then freezing it broke up the icky texture problem I was having. LOL of all the things I could have picked to eat I pick something healthy! They have been talking about almond milk in the FMF group for a few days. Let me tell you, that made me hungry. Just the shear fact that I can’t have nuts! Well I can’t have peanuts. I may be willing to try a flare just to try this stuff! Not any time soon mind you, but maybe one day!

 

The boys are doing ok. They didn’t even get upset or worried that I was in the hospital. In the last 2 to 3 years they have seen nana, daddy, grandma, my oldest son and now me go in the hospital and come back out better than they went in! Mike is actually looking forward for the next time he has to go! The kids’ floor just spoiled the crap out of that child. They had a pinball machine, two computers, a Nintendo 64, a game cube, tons of DVD’s and a whole toy/book library! So now every time he gets sick it’s a game. The little bugger just asks me if he is sick enough yet for the hospital! I thank God though. There not scared of going to the hospital!

 

Speaking of hospitals: All Children’s has changed mikes appointment again! This is the third time they have done that!

 

Well the only pain I was not expecting is in the lower left quadrant. Either my appendix or my ovary; I don’t know which. But the darned thing hurts!!

 

Another thing I don’t like is narcotics! I know, piss on me! I just don’t like them. They don’t like me! I get nauseous and jittery and sweaty and short tempered. Then I start to itch… well the itching is for Percocet along with the bitchy sweaty part. Vicoden is the jittery nauseous. Both make me stupid. They change the channel in my head over and over! With having my gallbladder out I have a short breath time. I sound like some one panting when I try to talk. I can only talk during the beginning of the exhale not the whole breath… lol so I have choppy speech! I have never told so many adults, politely mind you, to shhh I’m trying to talk too!

 

Goodnight! Before I talk about yet another thing that is completely off any topic so far... Like worm farming…

"Familial" Mediterranean "Fever".

Both my kids have FMF, so does my mother, sister, myself, my husband probably has it from things I have noticed over the years that he won't talk about, his sister has it, their grandmother had it, my grandmother had it, my grand father had it, I have several 1st second and so on cousins have it, and some great-great grand-parents/aunts/uncles had it. So this is from me: One mom in the generations’ long history of something that’s supposed to be recessive and RARE.

 

My thoughts today.

 

     Do you tell a genetically blind person “If you just look at it from a different angle you could see the positive in this situation?”  Ummm… I think “No”.  So far we can’t change our genes so they do things the way we think they are meant to work. For some reason long, long ago our 16th chromosome tweaked itself for a purpose or just by chance. I can’t change that now. I can only live with it. Actually I do have a choice on weather or not to live with it. The grim option though is just not an option for me. It however was an option for my grandfather, his brother and my husbands’ grandmother. They kept getting told that there was nothing wrong with them. That the pain they were in was just not real. That’s why as a mom of two FMF kids I do my very best to teach my children honesty and believe them, trust in them and above all help them have a voice which cannot be quieted!

 

But~!

 

     Lord help my children if they whine all day about every little thing that hurts. Yes by all means tell me it hurts, I need to know. That bit of information tells me if the treatment is working or if it needs adjusting but by golly you will live through it with out whining 24 hours a day. You will learn from it. You will keep living. You will rest when you need to and take care of yourself. That’s the biggest thing that I must teach my children. Take care of yourself. You’re the only one that can! (When you’re older) If you don’t feel good and what you’re doing is hurting you. YOU HAVE TO STOP! Even if that means coming to me and telling me you can’t do your chores, homework or other responsibility. Yes you will have to pick up your toys eventually, write the story the teacher set as homework, take the dog out and turn your dirty socks right side out so I can wash them. This is where the honesty and voice of self come into play. If my little monkey(s) doesn’t tell me that he is in too much pain to do something and does it anyway then they have earned a special time out. Time to do what you should have done in the first place: Rest, take your temperature, take your rescue meds, write down the flare and above all speak up and self advocate! All from the comfort of your bed instead of the living room couch where you could have been had you spoke up and told me you were not feeling well before you decided to play too hard for your current symptoms! This also applies to the other way that scenario can play out. If they tell me that there in to much pain to feed the dog, help put away the dishes, do there homework and then run screaming thru the house playing imaginary paintball, wrestling, football, speed racer, cops (with out robbers, just bad guys) the punishment is the same as is they bold faced lied to me. They still get there treatment meds but there more specifically grounded to there beds with only books, meals and toilet breaks. Even then my oldest son learned that the pain in his hands can be a royal pain in the butt too! There are days he can’t hold a pencil, or set his elbow on the table to write. Arthritis/tendonitis an “itis” of some kind hurts that day but to what degree. Is an attitude adjustment is necessary for the situation? During this time of figuring out what he can and cannot do with his hands we found out that he has a lot of arthritis, tendonitis and hyper-mobility going on almost all the time. What he didn’t realize was that I was watching him. He was manipulating the situation and me. He could play videogames, type, brush his teeth, pinch his brother, button his pants and shirt, play with micro mini cars and draw with sidewalk chalk but he couldn’t do his homework or put his laundry away because his hands hurt!

 

      BULL5%!7 Momma don’t play that way! He now knows I will most assuredly help him get his homework done. We bought him soft and squishy pencil grips, a clip board so he can do his homework where ever he is most comfortable that day and an icepack he can rest his elbow on. I will rub arnica on the sore areas and give him ibuprofen. I will help him with a rough draft by working together we can type it out very quickly on the computer but he must write the final copy himself. He is also rewarded for getting through the mundane. Every page of homework finished is 5 min of game time DURING homework time. I know, what a cool mom, but it works for him and that makes me happy or the other way around. He is learning that you can change your pain by changing your attitude. Yea… definitely still hurts. But can you deal with it? Can you do something about it or is it time to rest and get help.

 

     My sons always have two choices. Listen to the symptoms and care for yourself: take a break, modify the situation so it causes the least amount of stress, strain and pain; take rescue meds: inhaler, ibuprofen, arnica OR tests there limits. We humans tend to learn better from our mistakes so I let my sons make them with in reason. Like: No way would I let my son run head first thru the play room window again (no he didn’t have permission the first time, pull your head out of your butt) so there is NO RUNNING IN THE HOUSE! Because he didn’t learn the lesson the first time I have to enforce a rule he doesn’t want to follow and put large objects in front of almost every window in the house! On the other hand if you have a temperature of 99.8or and insist that you feel fine, even though you’re pale, mommy is going to let you play or do what ever it is you’re begging so very adamantly about. Then when your temp goes up, the tummy ache sets in, your knees have started to throb and your head is pounding I will be there while you tell me you shouldn’t have done that. With a blanket or fan and a review of the decision: weather or not the activity was truly worth the flare up, sometimes it is, lots of rest and a hug. The next time it happens they have some experience with making this decision. 

 

     This doesn’t mean I am monster mom either. Symptoms do sneak up on you and turn “I think I can do this.” into “What was I thinking?” in no time flat! Happens to me all the time! And I tell the kids that. “I thought I could do the laundry by myself today, but I cant, can you please help me?” So thankfully I get to hear “Mom, I thought I could ride my bike right now but I think I have to wait till its cooler outside cause I don’t feel good”. That’s truly music to my ears! It’s not whining when you tell people what your limitations are. Its self advocating, brave, heroic and best of all, truth with out excuses!

 

---

We all need a place we can go; a person we can vent to; some one to hear us say that we wish with all our hearts that this FMF thing just wasn’t affecting our lives and the lives of our children or other family members. Isn’t that what support groups are for! To not feel alone, misunderstood, alienated and just so confused, scared, angry and depressed! That’s why I came to FMF-Support AND also why I am so exceptionally happy that I have my family. I can call my mom or my sister or my sister in law and complain, whine, and get it off my chest for a few min and return the favor. So many have this “rare genetic disorder” and have NO ONE to talk to about it. SO if you need to complain for a min every once in a while or a lot while your getting used to the idea of having this crappy life long (or should it be written “long lived”) disease. I’m here to listen. But if every day, all day is a bad, horrible, what-am-I-going-to-do day I’m going to tell you what I tell my children. If everything around you stinks no matter what you’re doing or where you are, it’s probably you. Go take a shower and change your cloths (meditation and change your attitude). And mommy is here to help you any way I can because I know how hard it is. Well that last part is for my kids!

 

 

 

"Rare" is a cooking instruction and "normal" is a setting on the dryer. -my Mother

---

If you can't be a good example, you'll just have to be a horrible warning- Cathrine

---

Faith...
When you come to the edge of all the light you have,
and are about to step off into the darkness of the unknown,
faith is knowing one of two things will happen:
There will be something solid to stand on,
or you will be taught how to fly.

~ Patrick Overton ~

---

Do not let what you cannot do interfere with what you can do.
- John Wooden, Hall of Fame college basketball coach

 

 

HOLES…. There in the strawberries and now the periwinkles. I spent a few days wondering this: Is the neighborhood cat using my potted plants as a litter box? Is it the little Chihuahua mix that keeps peeing on the shed door?

 

---

Every thing was answered a few days ago though. I squatted down and started filling in the holes again and a huge toad jumped out of the pot! Scared the crap out of me! They are wiggling down under the soil and bunking’ in for the night! So I caught one this morning. I thought it had already left for the day till the pot wiggled! What’cha think? Mr. or Ms. Periwinkle Toad? More pics in the garden album.

Don’t you wish life came with spell check!

 

It was about time I started this blog thing. Never thought I would have a use for such a thing. But this may prove very interesting. So here we go.

Introductions are in order.

      My name is Amanda, that’s my legal name. The others I go by are: Fury- self chosen, it's what I am, a walking volatile emotion. Then there comes Shuntika Dakonia- my Native name given to me years before I was born, by my mother, it means graceful deer/beautiful woman, fire keeper. It was derived from Iroquois names out of the campfire girls’ handbook when my mom was around ten years old. Finally there’s "pit-bull". Affectionately given to me by my family. Apparently I have a temper that rivals a dog of the same name!

     Currently I am 28 years old and counting, thankfully. I have two boys, 5 and almost 7, and I am married to my high school love.

 

Have a peek at my garden! When all else fails watch something grow, it sure impresses the sh!7 out of me!