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

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!

"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!