OK I survived and now its another 3 weeks for the results.  LOL.  I knew I would survive the test even if it makes me nervous and I'm terrified of waking with a stoma. That's always my fear when they do anything with my abdomen. I was more scared of the prep and who wouldn't be. I don't know a single person that likes being turned into an experimental new shuttle for NASA. It wasn't that bad though. They gave me something new and granted it did evacuate my entire digestive tract it seemed to be a much gentler process.

 

 I have been flaring back to back since last Friday. My youngest is also flaring. SO much so that he didn't even want his birthday cake! The fact that our abdominal flares last more than the 12 to 72 hours that a typical FMF attack lasts just compounds my thought of Behcet's.  Its time to start the symptom journals again. I know it should be at least every 4 months that I journal someone but it is just aggravating and I'm stubborn. the fact that it would just help me seems to escape my mind some days.

 

Oh... back to the biopsies. The doc says that everything she could see looks perfectly healthy. Anything she will find must be found in the biopsies because visually at lease there are no signs of Crohn's disease, ulcers, or polyps. I don't like her wishy-washy answers to questions like: how many biopsies? "several" and "more than ten" were her answers. then: You are doing the Congo Red test right? yes yes were checking everything.. which was said rather 'sick of hearing the question" rather than reassuring. So if there is no Congo test I will upset to say the very very least.

SO I saw my GI doc. I should say my new one. my last GI doc listened for about 2 min, wrote on his clip board and then walked out while I was still talking.  Anyway this one listened! Today I am just really freaking out. I can kind-of handle the embarrassing tests but the fact that she said "many biopsies" and then something about in the teens but I cant quote that word for word. you want to know the biggest fear. She finds nothing.  That is the most annoying part of having a rare genetic disease. Aside from doctors looking at you wondering what kind of bug you are. Having tests come back completely normal.  like my blood pressure. it was extremely high for 9 months and then went away for a year and now I have extremely mild high blood pressure like 120 over 80 but I will have spikes that last from 12 hours to 3 days in the range of 155/105 and then come back down to healthy normal for a few weeks before going back up to mild hypertension. and they don't know why except probably the FMF.  so now my stomach its just crazy. I don't think its FMF alone but an inflammatory complication called Behcet's Disease. researching it scares me silly. between FMF and BD i just sit and nod my head when reading research or notes from other patients.  ... ok more later this is just frustrating. 

 

 

day 4 of this Flare set... 4 days ago my left bicep froze up. That was the major complaint. Yes i had fever and all the other stuff, "D" tired...whatever. 3 days ago my left arm felt like i had been doing bicep curls the entire day before (duh I kind of was, involuntarily). and the headache set in.  It just got worse yesterday. The bicep pain was gone but that muscle just kept jumping/twitching. Joint pain all over and crankier than a beast. Couldn't type to save my life. Not that today is very much easier on the typing aspect. I keep missing keys or typing with the opposite finger. Example s for l,  k for d, u for r, n for c. And also for today my left hip is to swollen inside the socket it's trying to give out all together. Don't forget the headache.

 

I will have to complain more later. typing this much is making my limbs burn from finger tip to shoulder.

 

 

 

SO ts now later..  my hip is letting me walk but my head wont let me think long enough to DO anything! I am headed to bed early in hopes the morning will bring the end of this flare!!!

Note to self and to others with aphthous ulcers.... DO NOT TAKE VITAMIN C SUPPLAMENTS at are ascorbic acid. I might try the one derived form calcium but the other one is the culprit for my last post on clusters. I stopped taking vit-c and there all gone.  Sheesh

It is really weird. My jaw feels like it is realigning itself. I no longer feel like I have a refrigerator in my mouth and its only been a week! Speaking is becoming so much easier and the whistle when I talk is slowly starting to go away. I don't expect it to be gone anytime soon but I do notice a big change. One thing for sure is; yelling with dental appliances in your mouth is a dangerous thing! So being the person I am, I'm going to have to learn how to yell without opening my mouth!

 

me

Flaring started yesterday. I guess you could say finally flaring. I have the weirdest immune system! I get my tooth impressions and flare in 24 hours. I have all but 8 teeth removed and I flare exactly a week later! WTF!!! Getting the impressions was stressful, cold and painful. Getting them removed was calm, prepared for, well medicated and I expected to be in pain. It only makes sense in terms of my immune system having something big to actually work on. Rather than stress or minor injury and my immune system being set off, for almost nothing. Well it doesn't make any sense at all but that's life! Thank goodness! I can smile! “"THANK YOU””

 

 A side affect of me brushing my teeth several times a day is that my boys are too! They are learning that tooth brushing is not just a bed time thing and are amazed that there allowed to brush anytime they want to.

 

 I’m learning how to talk again and starting to really like the change in my smile. Having a full plate on the top filled in the lines on the side of my nose. Like a little face lift almost. Too weird. I am just thanking the Creator that I am starting to not look like a “who” any more.  So they are over there>>>>> you can check out the progress.

 

 My thoughts are just not coming in order today so this post is a short one.

Amanda

Mack Truck anyone!   Ummm YEESSSS! That's exactly it... The feeling that I should be in a full body cast and knocked the heck out for a few days!  Now-a-days when I feel like that the second thing I do in the morning is start dinner. Because it's going to take me all day to do it! The funny thing is I get more done around the house on really bad days than I do on hi energy days. I know I have only a few spoons and no choice but to concentrate on the task at hand because the pain won't let me concentrate on anything else. Unlike a lower pain higher energy day where my body and mind are going a hundred and eighty miles an hour in different directions!  I can remember the feeling of being beaten half to death when I wake up as far back as I can remember. There ought to be some monster in the closet with a Louisville slugger and a ball-peen hammer covered in sweat because it was beating the crap out of every joint and muscle I have! AND I would have believed that before I learned about FMF! 
 
 
Emotions do set off normal flares, brain flares, cardio flares... Now when I say this, its FMF flares that are area specific! Not something else or a different type of FMF. It's the way I describe the localization of the flare because sometimes it sets off a pattern or is that is flares in a body pattern…or is it FMF creeps in where you are vulnerable and flares right there? hmm I really don't know how else to describe it. So I will describe the last flare I had.
 
The end of June I broke a molar, on the right, on top.  Now I started an abscess a few days later which if you have ever had one you know it hurts like crazy. I knew it was an infection by feeling and that the tooth itself hurt! Just that tooth, none of the others. (Granted I have more than one abscess but the others don't hurt anymore.) The other way I knew it was an infection is that the antibiotics made a dramatic improvement. THEN on July 2nd I had my dental impressions done for my oral surgery. Scheduled for July 24th ya'll, Yahoooo! So the stuff they use was very cold so I was yelling. Anyway between the cold and them having to do the impressions twice on top and on the bottom and then the doc coming in to do the last one and asking if he can numb my mouth… Ha ha! I asked him, "with needles?" he says yea. I said "um… no that's why I'm here." The office is based on sedation dentistry! ---insert stressed out ranting here---
 
July 3rd my blood pressure started to go up and I started with the aggravated, annoyed feeling, blisters in the corners of my mouth and some confusion. That night the right side of my head exploded in pain and my teeth were actually throbbing as were my fingers and toes. I could hear my heart beat in my ears and feel it in my eyes. Ut-oh! Took my blood pressure and it was 160/107. So I took my blood pressure meds and pain meds because the right side of my face was screaming! I thought the infection was back with a vengeance. So I did this roller coaster with my blood pressure and pain that even arnica (although it helped a lot), percocet, vicoden, and lots of rest could not stop. All day Saturday my mother took care of me and my kids because she thought I was sicker than her that day! By Sunday I was ready to go to the emergency room. My temp was up my blood pressure was still doing the roller coaster thing, highest readings 165/107 and 138/119. That night I was going to head home and go to the emergency room by my house, they know me there, but the car broke down so Josh couldn't come get me (totlay a God thing). So Monday I went with my mom to our primary and got in as a work in with her. We had 3 nurses on their toes. I was in bad shape and mom was flaring too! So the doc comes in and reads my medication journal and looks me over and tells me …. (Wait for it…….. ) "Your flaring!" This pain that has me thinking that the abscess has gone up into my temple and is pushing my eyeball and the pain was so intense in my ear I couldn't touch it or hear out of that ear. I thought I had a massive infection that was threatening my brain! No I was having an FMF flare! That localized into my TMJ. He tells me that's it. I have no sign of infection. None! No swelling, no redness, and the fact that it started 24 hours after the dental appointment confirms that it's my FMF triggering my TMJ!
 
Well holy cow! So then he tells me no gum, no brushing my teeth, no chewy foods, no hard foods, and my mother, bless her heart, starts giggling. Now she's flaring her butt off from her eye surgery she had on the same day as my dental appointment but she's laughing at me in the doctor's office. She asks the doc, bless his heart, "does this mean no talking too?" AND he says yes! So yippee, my mother can tell me "even the doctor says you have to shut up!"  Thank God we have a sense of humor, a morbid one at times but it's fully functional.
BUT you know what the funny thing was. I still didn't believe him. I thought for sure that I had an infection that was going to kill me. But I would give it one more day just to see if he was right. Josh borrowed a friend's car and came to get me and the kids from my mom's house that night. The next morning, guess what, I woke up feeling great. No pain no stiffness no baseball bat to the side of my head….. Just great!
 
FMF the other F word!
 
SO that sums up my feelings for the day!

YEA! today I got the financial green light to schedule my oral surgery! If they can do the impressions this week my surgery will be the week of July 22. If they cant do them until next week then the oral surgery is the week of the 29th. School starts August 18th so that cuts the trip to Kentucky down to 14-16 OR 10-12 days. More if I think I can handle traveling earlier.

 

I am just so excited to get my teeth fixed. This is truly a dream come true!

 

Josh and I are going to do some pictures afterwards. Sounds like so much fun!

It's just one of those "cant un-ass the chair" days. My blood pressure is higher than normal today. So that makes the tooth that just broke, yes another one, throb even more. Picking things up off the floor is just not happening. It feels like my upper jaw will just explode. Thank God for pain meds because I was told I cant or rather shouldn't have anymore antibiotics until a week before the oral surgery. I need to write down how the dentist told me it would go, the procedure and payment schedule that is. most of the time I haven't got a clue that i have 4 abscessed teeth. Other than I am temperature sensitive the only thing I feel is throbbing every once in a while. Not cool though is I do the same thing with sinus infections. I have had many sinus infections and the only way I know I have one is my nose will run when I bend over and i get more headaches. well more is not really correct. I have learned that the head ache I get with a sinus infection feels different from the one I get almost daily. None of my meds will make it go away either. So I go see the doctor and tell them I have a sinus infection. My primary believes me but my last primary and the ER don't. Sinus infections are supposed to be painful, very painful. When the x-ray of my head came back though they stared at me like I was a bug! I'm getting used to that one. Its a running joke around our family for medical professionals to ask one of the following at every visit, no matter the doctors specialty. "You know its not supposed to work that way?", "Do you know how rare that is?", "Why do you want to have another diagnosis?" << THat one pisses me off, DUH, no I don't want one I was asking if I did, not if you think its a good idea. Like my visit was simply to purchase a new hand basket to go to hell in!

Holy Crap! you never really see how the population views you until your buying a laptop and you turn on the web cam in the store. OMG! That's what I look like in bright fluorescent lighting! I am never wavering from FLYlady rules (Dressed to shoes including hair and makeup) ever again in my life if i can help it!

 

I have so many blog entries in my documents folder. I keep writing them and then questioning whether or not to post them!... sheesh. So from now on they will be started and finished here on the website and not in my word processor and left for "later".

 

I'm still doing well with my weight. I was worried about what I had been reading on message boards regarding weight gain after gallbladder surgery. So far the only problem I am having is not being able to tolerate aspartame (more now than before) and NSAID's just hurt. Those two things I can live without! I cant eat super greasy foods anymore and not because of adverse reactions. They taste bad! I put margarine on my french toast and had to scrub the scum off my, teeth?... no my whole mouth!

 

So, anyway, I have a new laptop with vista on it. I am not finding any problems with vista with the exception of UN-installing Norton. That will make your puter crash! You have to go to the Norton website and download the removal tool and completely remove Norton from the system. After that everything has been just peaches and cream!

 

see you soon

Amanda

 

 

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!

 

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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

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

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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 ~

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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?

 

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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!