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Monday, July 12, 2010

And on they go....

So I'm really late on posting "Promotion" ceremonies for the boys. D promoted from 6th grade (he will now go to Jr High) and J promoted from K. Here are a few pictures from D's promotion ceremony..it was almost as long as a HS graduation ceremony LOL






Emma paitently waiting...playing on the floor with her "ho ho's" aka cars and eating some snacks




D surprised us all by getting on the Honor Roll for the last trimester...he was struggling ALOT in Math and pulled his grade up! WTG D!



D with his "Graduation Certificate"..there were SO many people there I couldn't get a clear shot lol



Now onto J's "Promotion" ceremony..it was SO CUTE! The kids came out and sang a couple of songs then had their names read and came and got a "diploma" with their picture and got a candy lei..

J getting with Lei and his diploma and his SUPER AWESOME teachers!




How cute is he?



J-man with Mrs M



J-Man with Mrs T (he had a HUGE crush on her LOL)



Oh and I just had to add another picture..its REALLY gross so don't look if you can't stand gross LOL. Jeff and D went to Scout Camp the week after school got out and Jeff and D were playing "Capture the Flag"...D had it and Jeff tried to tackle him and ended up falling and biffing it majorly...he scrapped up his right arm AND his right leg. I made him go to the Urgent Care about 3 days after the incident and he had an infection in his leg (which I figured since his leg was all red and swollen). They put him on SUPER strong antibiotics that make him sick. This picture was taken 2 days AFTER starting antibiotics and he ended up having to go in AGAIN and get a shot of meds....



After a week of oral Antibiotics and a shot of some..its looking much, much better but he still has to go back again in a couple of days for them to check it.

Stay tuned for news about a project we are working on!!!

Sunday, July 4, 2010

FMS...what is that you say?

So many of you may or may not know I suffer from FMS (Fibromyalgia) along with an assortment of other things such as CFS (Chronic Fatigue Syndrome), CEBV (Chronic Epstein Barr Virus) and also Osteo Arthritis in my neck. I found this group on Facebook where everyone also suffers from it. A member there created this wonderful post that I would LOVE to share as it explains how I feel ALL.THE.TIME.

***How Does FMS Make Me Feel?***

My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

My intolerance - I can't stand heat, either. Or humidity. If I am a man, I may sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

Being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

The difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not better, I am sounding happy. If you want to comment on that, you're welcome.

Being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you. - Please understand that FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

"Getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

If I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive. - If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the the doctor, or to the physical therapist. I need you on a different level too . you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... and, as much as it's possible, I need you to understand me.
-BY - fibrowelcomepackage.com

***What Is It?***

Fibromyalgia (fi-bro-my-AL-ja) syndrome OR FMS -produces chronic body-wide pain, which migrates and can be felt from head to toe. Other symptoms include persistent fatigue, headaches, cognitive or memory impairment, morning stiffness and non-restorative sleep. The pain can migrate from day to day. Recent scientific research studies have shown central nervous system involvement in FMS.
Frequently Called the "invisible disease," because outwardly, we may look perfectly healthy. Inside though, we may have intense pain throughout our bodies, we may be constantly fatigued and weak, we may be dizzy, confused, lacking sleep, suffering digestive disorders, and generally living a poor quality of life. There is no known cure for Fibromyalgia, but there are ways to treat the symptoms, to improve that quality of life.
Ordinary touches multiply into severe pain for fibromyalgia patients... Imagine living every day in excruciating pain. The millions of Americans who suffer from fibromyalgia must cope with this as well as the doubts of many who dismiss it as a made-up illness invented by a troubled mind.
But researchers at UF and elsewhere are beginning to piece together clues that Reveal the physical basis of the puzzling syndrome that causes severe fatigue and aches, and has defied easy diagnosis.
UF scientists have found an abnormal central nervous system reaction in those with fibromyalgia-the body magnifies ordinary repetitive stimulation into an experience of crippling pain.
"This is particularly important because it has been unclear if fibromyalgia was just an imagined illness or a real syndrome," said Roland Staud, M.D., an associate professor of medicine at UF's College of Medicine who also is affiliated with the UF Brain Institute. "We now have good evidence that shows that it's not a psychological abnormality, but that there is a neurological abnormality present."

Staud, who presented his research findings at the annual meeting of the American College of Rheumatology last November, recently was awarded a National Institutes of Health grant worth nearly $800,000 to continue his studies for the next four years. Donald Price, Ph.D., a professor of oral and maxillofacial surgery in the College of Dentistry, and Charles Vierck, Ph.D., a professor of neuroscience, are collaborating on the research. Their goal is to develop a better understanding of the condition, with an eye toward improving diagnostic tests and treatments.
A chronic illness with no known cure, its cause also is not known. Researchers have theorized that an injury to the central nervous system or an infectious agent might be responsible for triggering it in people who have inherited susceptibility. Symptoms include persistent and widespread musculoskeletal pain, fatigue and tenderness in the neck, spine, shoulders and hips.
Staud and colleagues found the central nervous system abnormality by conducting a series of repetitive stimulation tests on people with the syndrome as well as healthy research participants. The tests involved repeatedly placing warm plates on their hands and arms. The healthy participants felt the sensation but did not report it as pain.
For those with fibromyalgia, however, the sensation would magnify with each repetition into an experience of crippling and unbearable pain.
"When a sensation signal reaches the spinal cord, the signal can be omitted, changed or augmented," Staud said. "If it is augmented, then something that is innocuous, such as pressure on the skin, can then be perceived as a painful stimulus."

Jessica LeMay, one of Staud's patients, has been battling fibromyalgia since 1993. The 30-year-old Lake City resident said the pain starts in one area and usually spreads, sometimes becoming overwhelming. "I imagine if someone had taken a baseball bat and beaten me with it, that's got to be what it feels like," she said. "Depending on the day, I'll just move out of the way if someone tries to touch me." LeMay said many people dismiss her condition, not understanding the "huge difference" between her severe fatigue and the healthy person's occasional tiredness. "When this fatigue would come about, it's almost like a weight being dropped on you, and you can't function anymore," she said.
LeMay said she is hopeful that Staud's research will lead to more effective treatment for fibromyalgia patients and better understanding by the general public. "In our society, you either get better or you die, and fibromyalgia patients don't do that," she said. "We don't fit in the mold, so people don't know what to do with us."

Article By Fibromyalgia Reseacher,
- -Eric Benjamin Lowe

***I'd Like to Introduce you to...
Fibromyalgia***

FMS is not the newest fad disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. However please remember....stress can effect the body, just as physical pain can effect the mind, causing stress and depression... If you need help in coping..see a therapist...IT does not mean you are " crazy" and it may help find methods to cope! In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is also recognized as a disabling condition by THE ARTHRITIS FOUNDATION,
THE SOCIAL SECURITY ADMINISTRATION
and THE MAYO CLINIC.

Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

If you got through all of that...thanks for reading :) This is just a small look of what I deal with almost everyday. Like the article states..it changes day to day. For me most days are good but if I do too much I pay for it for DAYS after. Its hard to understand when you are not living with it yourself.

Tuesday, June 1, 2010

Some SMALL answers..

I guess this is how it works with having kids..takes forever to get stuff done and when it does get done you only get half answers. For the past several months we have know that Emma has Sensory Integration Disorder which actually explains ALOT about her. Why she "freaks out" at the grocery store, at family parties, etc. So her Peditrician sent a request to Inland Regional Center (which is run by the state) to come and eval her for SI and also for her speech delay. It has taken 3 LONG months to finally come to this day. They came and she actually interacted well with them which I was VERY surprised about because she isn't usually like that. After an hour and a half we were told that she IS speech delayed. She is currently 30mths and for her Speech EXPRESSION she is at 16mths. She understands what people tell her but she doesn't talk and express what she wants/needs very well. We have tried for the past 6mths to get her to talk more and she has made some slight progress but not as much as we had hoped. Well the state offers 2 programs for Early Start (kids that are younger than 3). For one program they have to be 50% delayed and they have someone come out and help the parents and help the children with the issues a couple of times a month. It used to be that they had OT, ST and PT available but due to the budget cuts they have eliminated those services. The other Program is called the Prevention Program and is for those that fall in the 33-49% category. This is the one that Emma falls into. She is currently at a 16mth lvl for her speech expression and she is 30 mths so she missed the other program but like 5%? Anyway what the state can do for her is:

*Service Coordination (a corridinator comes every 3 months to work with her)
*Family Training and Support
*Developmental Monitoring
*Information & Resources
*Referrals to Public and Community agencies

So we figured out the speech, BUT I found out today that they don't dx the Sensory...which the Pedi thought they did. Just observing her and asking me questions about her "episodes" they feel that she does have some sensory issues and suggested that I ask her Pedi for a OT that is certified in SI..so back to the drawing board on that one. They also gave me a couple of books to read that might help.

So the day started with her Eval then the boys came home from school and Hunter had 2bad grades on some tests (D's..and this coming from the kid that has NEVER gotten lower than a B on a test)..and ANOTHER assignment he didn't turn in. I swear this kid is going to make me bald (from pulling my hair out in frustration). He KNOWS how to do the work, he just finds it boring. He had a Neuro follow up last week and he suggested that we get him the Psychological evaluation done. I contacted the Psy assigned to their school and he also talked to Hunter's teacher and he agreed that SOMETHING needs to be done to help him. Whether it be harder work or what. We are having a meeting set up in the next week or so with the Psy, teacher, counsler, and school admin and us to go over what we need to do and to formally request the exam to be done. It seems like with Hunter we go one step forward and 2 steps back, its just so frustrating! Esp when people don't understand how he is. He CAN control himself but then he gets home and just explodes..that is the best way I can describe it. They upped one of his meds and that seems to be helping somewhat but now he is going to start talking with a counsler that specializes in what he is going through and also anger-management (which he has some issues with but its more geared towards himself with hitting himself, pulling hair out and banging his head).

Oh and last but not least tonight I had to run to the store to grab a few eBay things and I get a call from Dallin that Jordan had pushed Emma through the front window...um WHAT? So I get home to find out that they had been sitting on the couch and decided that it was a bright idea to play behind the blinds and Emma pulled her blanket up and it somehow threw them both back against the screen and they halfway fell out...seriously only my kids would do this stuff. Add to that Emma dancing on the kitchen table and we have a bunch of monkeys! Both are fine, just shaken up a bit..now HOPEFULLY they will listen when I tell them not to do that stuff! BTW Jeff was also home with them he was on a school call and had his headset/microphone on.

Friday, May 14, 2010

A little sore today

Went to the Chiro for my weekly apt and found out I have Osteoarthritis (sp?) in my neck...just another thing to add to the list of crap going on with me..oh well. VERY sore in my neck today but should be better by tomorrow. Emma and I are trying to get over a Viral infection that we have all been sharing. Besides that nothing much going on. My thoughts and prayers continue to be with the Jolley family as today is Caitlyn's funeral. I really wanted to go, but with being sick and Emma not behaving in that kind of enviroment I thought it would be best to stay home. Dallin wanted to go and support Stephen, so I told him that if he could find a ride he could go, but everyone we called was going from work so it was a no go for him. I told him that he could talk to him on sunday at church.

So here are a few pictures from the last few days..enjoy! Oh and I'm going to be switching up the blog background so its easier to read so pardon the dust while I do that! Thanks!











Wednesday, May 5, 2010

Please keep the Jolley family in your prayers...they recently lost their 19mth old daughter to an accident. This is a family in our ward. It has really hit me hard...you just never know what might happen to people in your family/life. Hug your kids tight!

Monday, May 3, 2010

Well today we are having E's hearing tested..I think all will be well with it. She understands everything we tell her but she had to have it done in order to get speech eval..I hope she cooperates! I hope her sensory stuff doesn't interfere with the testing...wish us luck!

Tuesday, April 27, 2010

Some progress on the home front for a dx...yeah! This process takes TOO LONG! In the end it will be good though :) I took some pics of the kiddos playing in the water, I will upload them and post them. They are too funny! I can't believe April is almost over! Time is flying by! Not much else going on....

Tuesday, April 13, 2010

So its been awhile

What have we been doing over the last several months? Well a bunch of Dr visits, school work, and well just some hanging around...see??









We had Easter...we just hung out and watched conference together as a family and found eggs..nothing big but we had a good time. Please don't mind the mess in the background...we have our own Tornado whom we call "Emma" LOL. We can't keep ANYTHING clean when she is awake.





Here Dallin LET Emma color on his face...little did he know it was NOT washable marker LOL oh and this was the next day it was much worse hehehe



Between sick kiddos and Dr visits for other reasons..its been quite busy around here. Hopefully will update on that other stuff later as well get more answers :) Hopefully I can keep up with the blog this time....not promising anything though LOL