SNOW DAYS & Sick CHILDREN! UGH!

Since LAST THURSDAY, I have had either both children home or at least one child home due to illnesses and/or snow days. Understand that here in Virginia Beach, SNOW is very rare! We are definitely not equipped to deal with snow on our secondary roads putting buses at risk for skidding in our rural areas and neighborhoods. Today is the FIRST day back since Tuesday and it was SUPPOSE to be their day off for Teacher planning. So the schedule is all messed up as they also put Monday as a half day! And a previously scheduled day off now a day of school. Now if I worked a normal 9-5 job, it would totally screw up a schedule and probably make bosses mad. Good thing I'm my own boss right? Anyway, carrying on.... I still have a child home sick! Poor kiddo has Hyper-Mobility Joint Syndrome and complains of wide-spread pain very often. SO I'm STILL not KID free! And did I mention hubby is TRAVELING? Overall, my children are pretty self sufficient and do their own thing when they are home. But what I complain about is NOT GETTING out of my HOUSE!

I do have a MILLION things to do at home, you know... cleaning, prepare taxes, process pictures.... but it's that I just don't FEEL Like doing it! How many times do YOU put off what you NEED to do just because you don't want to do it?

Things I COULD BE DOING:

1. Removing border in kid's bathroom
2. Preparing my documents for taxes
3. Process client pictures as it's going on a month!
4. Clean my house AGAIN! Never ending battle here right?
5. FOLD Laundry! 

So who wants to do all that when you can just blog about it instead?

I was SUPPOSE to meet up with a friend and eat lunch, but can't take a child that hurts out into this cold weather.

Back to Kiddo who has pain ~ 

At 18 months old the kid stopped walking and went back to crawling and just complained that he "HURT". So many tests later and specialists they said he just had inflammation in his joints even though no bone scans were done. Okay sure, it went away over time using tylenol when he did complain and that seemed to hold him over or he forgot about it after being introduced to a toy. Short attention span in kids :)  Fast forward a few years later, around age 5 he started complaining his arms and legs and body just "ached". Asking him where it hurt, he would just show me all down his arms and legs. Okay I shrugged it off as growing pains and didn't think anything of it as his daddy had told me he had bad ones growing up too. It progressively got more persistent and complaints were frequent. So I had begged the pediatrician to refer him to Rheumatologist. MANY months wait as there were only two in our area (now just 1 :( ). They diagnosed him with just having over extended joints. No specific name just joints and ligaments can extend beyond the normal 180 degrees. I wasn't happy with this answer and wanted a second opinion. Off to Duke Medical to the Children's hospital to get 2nd opinion. The specialists here said the exact same thing and said our doctor is on track, but did give us an actual NAME for the issue at hand. Hyper Mobility Joint Syndrome is the magical name. So NOW I can research and find out how to help him. 

Armed with medications for his pain (Naproxen Sodium liquid) at school and at home we are all set right? Wrong! A child can't work through his pain and also pay attention at school! So we have had a few flare ups. One time it was an entire week he couldn't walk it hurt every step! Went to Rheummy, did X-rays, blood work...etc... Nothing abnormal! This also included a bone scan to see if any of his growth plates and joints were inflamed. NOTHING showed up at all! Ugh! Frustrating to have a silent and undetectable illness. Each time he complains I have to pray that it's not a flare up where we have to go back through all those tests. Know how hard it is to HOLD a 70lb child down while they do blood work?

So now this child is home today complaining of pain all over. No sense in sending him to school  when he will just be coming home a few hours later. 

I just want him to enjoy life and not one in pain. Not many parents facing this issue, so no one to really chat with about the outcome.

Overall, he's a happy little boy and makes me proud on many levels. 

Thanks for listening to my rambles as I know there is no rhyme or reason for the order my rambles go in :)

~ Brandi

Having a rough day...

So I am having a rough day. Can't seem to get warm today and I ache all over.

Here is something I was wanting to find to explain Fibro.
Please read with open mind :)

What is Fibromyalgia?
In trying to explain fibromyalgia, the American College of Rheumatology uses an effective analogy. They say that for the person with fibromyalgia, it is as though the volume control is turned up too high in the brain’s pain processing areas. Consequently, they endure chronic pain across much of their body, despite no evident source of that pain, in addition to a wide range of other symptoms including chronic fatigue and muscle soreness.
Is it a disease?
Fibromyalgia is not a clinical disease, it is a syndrome. In other words, it is a set of symptoms that are often experienced together but are not related to a specified cause.
Is it fatal?
No. Fibromyalgia by itself is never fatal.
Does it just go away?
No. While the symptoms may come and go, fibromyalgia is chronic. It could last a lifetime.
Does it get worse?
No. It is not progressive. In fact, many people improve over time.
Does it damage the body?
No. Fibromyalgia has not been shown to damage organs, muscles or joints.
Is fibromyalgia for real?
There is something of a minor credibility gap with fibromyalgia because so many symptoms are reported by sufferers and yet it is an invisible condition it can not be measured by medical devices. But this is the nature of pain; pain is personal, it is experienced and assessed by everyone differently.
And pain all-over body pain is the central symptom of fibromyalgia.
Adding to this credibility problem, according to the American Fibromyalgia Syndrome Association, is the possibility that fibromyalgia and chronic fatigue syndrome (also called myalgic encephalopathy) might actually be the same condition.
Is fibromyalgia a form of arthritis?
No. Arthritis is a joint disease characterized by inflammation. Fibromyalgia does not cause joint inflammation. It is an arthritis-related condition, though, because of the similar pain and fatigue in the joints and tissues.
As such, arthritis and fibromyalgia are both considered rheumatic conditions, medical conditions that impair the joints and tissues, leading to chronic pain.
Who gets fibromyalgia?
Estimates on how many US adults suffer from fibromyalgia range from 3 to 6 million. It appears to affect people middle-aged or older (although it does affect children), and far more women are diagnosed than men as many as four out of every five are women.
What does the word fibromyalgia mean?
The word comes from both ancient Latin and Greek, combining the Latin word for fibrous tissue (fibro) with the Greek words for muscle (myo) and pain (algia).

Doctor Miller ~ Rheumatology

So on Wednesday, I had a Rheummy appointment. I've been in constant pain for as long as I can remember these past few years. Just sitting down typing this will/or would cause my arms and fingers to ache. Or my legs to ache or what ever seems to be the "HOT ITEM" of the moment. There is only so much pain a person can handle before they seriously just get so depressed and not want to do anything at all. But with me, I've got two children who rely on me daily for food and life.

After Wednesday's appointment, I feel MUCH better KNOWING I finally have a diagnosis and possible help! When I say possible help, meaning a medication that has been approved for my problem. My problem is Fibromyalgia. It totally explains my symptoms and my aches and pains. After looking at my blood work and ruling out other factors that could be causing my complaints and reading my "symptom" list...it was decided that this has to be it. Basically Fibromyalgia is a "rule" out problem. Meaning that once everything else has been ruled out, then this "has" to be it. Don't surprise me...I've seen patients with this, as well as worked with them and have a friend with Fibro. It's NO surprise to me that this same day my grandma was also diagnosised with it as well.

After I stop breastfeeding Rheanna, and figure out EXACTLY what is causing her breakout on her bottom, then I will definitely be taking the perscribed medication. This medication is called Lyrica. It has some side effects, but of course every medicine has it's downsides. Most people are able to work with/through it. I just hope to go out and play with the children as they get MORE active!

I'll post some more about this later :)

Thanks for reading!

~ Brandi ~