Dead Battery

What is your battery charge?  Imagine that most people go to bed at night, get a full nights sleep and wake up with their batter charge at 75% to 100%.  For someone with FM (and I am using me as the example), I am lucky if I wake up with my battery at 50% after a full nights sleep.  On the bad days, it is 25% or less.  Now imagine trying to function all day with your battery starting out so low...it can't happen. 

This is one of the hardest things to explain to other people.  When I say I am tired, people just don't understand how sever it really is.  I have started using the battery with ML so he knows exactly where I am at and when I need his help.  I will tell ML that my battery is on low or flashing red, etc.  There are some days where I can go a little longer with my battery low or if it is flashing red that means I need to lay down immediately before I collapse (literally).  It has become a good visual to let him know where I am at and to help explain to others what people with FM go through.

PT or Bust!

Sooo, I have started doing physical therapy.  And I haven't quite made up my mind yet as to if it is working or not.  I haven't talked to anyone else with FM that has also done PT.  It seems to be working my muscles and stretching them out, but then it is causing more pain in other areas. 

I have been to the point where it is getting hard to walk or stand for long periods.  My back, hips and legs are killing me.  So something needs to happen.  I am open to trying it and hope it works, but time will only tell.  I will keep you updated.

Funnies

A few funnies from a 2 year old:

A.:  MOM
Me: huh? (since I was still in bed, half asleep)
A.:  Balloon in the sky! (in reference to her balloon she lost several weeks ago)

A:  "Mom I want boys to see my boobies" (After explaining to her that she needed to keep her shirt on in a restaurant)

When trying to take a picture of A. petting a bunny, I said "A. look at mommy."  And she turns to the bunny and tells it to "Look at mommy."

"I hungy Mommy, I really hungy!"

Sleep? What's that?

Sleep is such a hard thing to come by when you suffer from FM.  You can have problems falling asleep, problems staying asleep, insomnia and even sleep apnea.  One of my biggest problems was that I would go to bed at night and wake up the next morning feeling like I never went to sleep.  I would either have so much pain that I couldn't go to sleep or stay asleep or I would be in this weird half asleep/half awake state all night.  This would cause me to wake up still tired and have absolutely no energy.
A lot of people who suffer from FM have sleep disorders.  People with fibromyalgia lack the deep, restorative level of sleep, called "non-rapid-eye-movement" (non-REM) sleep.  They are not able to go into the deep REM sleep that our bodies so desperately need.  When you are in the REM state, that's when our bodies repairs and replenshes themselves.  So most doctors choose to try to focus on getting you sleeping better first. 
Once I was able to get my sleeping under control, I started feeling better.  Now of course, with children sleeping can still sometimes be difficult and I still wake up with no energy on certain days.  But at least now I have medicine that can help me to fall asleep and stay asleep.
And even if you don't have FM, sleep is such a huge thing for us. So get your sleeping under control.  It will make for a happier you and a happier mommy and wife.

Check here for more information.

No Go!

So tonight I am supposed to be going to the U2 360/Blackeyed Peas concert with ML for his birthday.  We have floor seats.  Last week we got an email stating changes for the floor/general admission seats.  Turns out there was no longer going to be any seats, standing room only, no chairs allowed. 
This really got me thinking...how am I going to be able to stand for over 5-6 hours without sitting AT ALL???  I decided that it would be best that I didn't go.  There is no way I could last for that long, I would be in too much pain and just couldn't do it. 
I was actually looking forward to going with ML.  Several years ago I couldn't go because we had a baby at the time.  But oh well, what am I going to do?  I think that this is the first, real event that I have had to cancel due to my FM.  There have been family things and small things with friends that I have had to cancel or postpone.  But nothing real major.  Hopefully this will be something that is far and few between.

Have fun ML, wish I were there with you!

Boobies

The other day we were in a restaurant and little A. decided to stand up in her high chair and start pulling her shirt up.  She wanted to take it off and I told her no "because we didn't want the boys to see her boobies."  And then she proceeds to stick out her chest and in her 2 1/2 year old voice says "I want the boys to see my boobies!"  Kids, gotta love them.

Shout Out!

I would like to send a Shout Out to ML.  Since his broken foot has finally healed, he has been busting his butt these last two weekends making some extra money.  Since Thursday, he will have done 7 football games by the end of today.

Thank you so much ML for doing this extra stuff to help us finacially.  The girls and I love you so much and appreciate your hard work.

Fibro Friday - What doctor?

As some of you read through my story, you may relate to some of the symptoms.  But where to start?  Which doctor to go to?  I guess it would all depend on your insurance, so you probably need to start with your primary care doctor and they can send you to a specialist from there.  I have learned that there really isn't one specialist that deals with FM, there are several.


I honestly can't remember why or who suggested that I go to a Rheumatologist 9 years ago, but for some reason that's where I ended up and that's who diagnosed me.  And I have seen a Rheumatologist ever since.  I try to keep all of my FM issues with one or two doctors.  It is better for your records and easier for the docs if everything is not so spread out between docs.

If you feel like you have been experiencing some of the symptoms, please seek medical help and not suffer alone.  Here is a list of docs that can diagnose and treat FM in case you are in need of some answers.  (All info is taken from website linked below).


Doctors who specialize in treating FM and pain:


Rheumatologists diagnose and treat arthritis and other diseases of the joints, muscles, and bones. This includes fibromyalgia, rheumatoid arthritis, osteoarthritis, gout, lupus, back pain, osteoporosis, bursitis, and tendinitis.


Pain specialists are usually board certified anesthesiologists, neurologists, physiatrists, psychiatrists, or oncologists with additional training in pain management. They receive credentials from the American Board of Anesthesiology (ABA) in collaboration with the American Board of Physical Medicine and Rehabilitation (ABPMR) and the American Board of Psychiatry and Neurology (ABP&N). Or they may receive credentials from the American Board of Pain Medicine.


Neurologists diagnose and treat disorders of the nervous system. This includes treating common pain problems such as headaches, back pain, muscle disorders, fibromyalgia, neuropathy (carpal tunnel syndrome), and reflex sympathetic dystrophy (RSD).


Orthopedists specialize in the diagnosis, clinical treatment, and surgical repair of bone injuries. They also treat muscle problems and joint tissues -- tendons, ligaments, cartilage.


Psychologists diagnose and provide therapy for problems associated with pain, perception, and emotional issues.

Whiny Day

Ok, so here is my first whiny day.  I am in so much pain, I am not motivated to do anything.  My kitchen is a mess, living room, bedroom, bathrooms, the list goes on.  But I can't get the pain to go away.  It's mainly in my legs and hips so it hurts to stand, to walk, to sit.

One of the new meds my doc started me on is extremely helping my pain at night, but during the day is another question.  The meds I do have I can't take during the day.  Let's just say that they wouldn't mix with me and a 2 year old, I wouldn't be able to function on them.  Thank goodness I see my doc in another week or so, then we can try to get a better med to help me during the day. 

If you are having extreme pain or fatigue today, or are just having a bad day all together, hang in there.  Like I like to remind myself, this too shall pass.  I am not going to worry about all of the stuff I can't get done today and focus on all the blessings I do have.  Honestly, is anyone gonna die because the kitchen is a mess or the bathroom, NO.  As long as your loved ones know they are loved, that's all that really matters. 

My Love

It started 9 years ago, the beginning of a college class, aptly named Marriage and Courtship.  It was the 2nd night of class, and there was a boy in my seat.  Who would have ever thought that he was to be my husband? 

Through the entire semester, we became friends and a love was growing that I didn't know was there.  Our first date was October 31st, and there began a whirlwind of a courtship.  We fell hard and we fell fast, it was totally meant to be.  I had found my best friend and the person I wanted to spend the rest of my life with. 

On a Spring day in March, I knew he was up to something.  He took me to "our bench" and there he got down on one knee and proposed. 

October 14, 2000 we became husband and wife and as they say the rest is history.  We have had our share of ups and downs and I can honestly say the only reason we have survived is because of Christ in our marriage.  And the fact that the "D" word is not in our vocabulary.  We are together, FOREVER!!!

The last 9 years have brought us three beautiful girls and tons of memories.  We have both grown and learned knew things that have molded us into who we are today.  We are still in love and committed to making our marriage work.

So to you, my love, my best friend, thank you for giving me the best 9 years out of my life.  (I know that we will have another 50+ years.)  Thank you for the husband and father you have become.  I couldn't imagine life any different.  I love you!!!

Mommy business is hard

Being a Mommy is hard sometimes, well most of the time, especially when your kids are sick.  The debate of whether to take them to the doctor or not.  How long to wait the fever out? It can go on and on. 

It has been proven by doctors that I have a very keen sense of Motherly Intuition (not to toot my own horn), so I have always relied on that.  And when in doubt, I believe it's always better to be safe than sorry. 

I have a feeling that this cold and flu season is going to be even crazier with the Swine Flu out there.  And as moms, I think we are going to have to be even more diligent to make sure we keep our kids safe and healthy.

So as this "fun" season is upon us, good luck to you.  Listen to that small voice that is your Motherly Intuition.  And I rather have a doctor tell me that it's just a cold, rather than not act on something that could be very serious.

Fibro Friday - Fibromyalgia in the Bible

Fibromyalgia has been around for centuries. In fact, it has been written that Cleopatra suffered with this condition.  But how come you never hear of any "stars" having it.  I did some research and could only find a handful of people and then I found something that goes back to the day of Christ.


It could be inferred that Job (from the Bible) suffered from FM.  There are many verses that decribe his suffering and pains that were very similiar to FM.  In Chapter 7:3-4 it is written: " So am I allotted months of vanity, and nights of trouble are appointed me. When I lie down I say, 'When shall I arise?' but the night continues, and I am continually tossing until dawn." 

In Chapter 30: 16-17: "And now my soul is poured out within me; days of affliction have seized me.  At night it pierces my bones within me, and my gnawing pains take no rest."  (New American Standard Bible)

This makes me feel a little better.  I believe the Bible as the true word of God.  And if it's in the Bible then I really know that it's not "all in my head."

No Hot Water For You!

We, as Americans, have a tendency to take so many things for granted.  It's only when things are taken away that we realize how much we rely on something or how it would be so difficult to live without it.  

As of yesterday we were going on 4 days with NO hot water.  Sunday we thought something might be wrong with our water heater.  It wasn't until Monday that we figured it out because all of the hot water was gone from the tank.  I hate cold water (unless I am drinking it) and especially to shower in it.  My hubby and I had been braving the cold showers, but after my shower Tuesday morning I was done.  I was willing to go without until our water heater was fixed.  And of course there was no way we were going to bathe the girls in it.  We had so many offers from friends to use theirs (which we were so thankful for) and others suggested boiling water on the stove to make a bath.  I went with the easiest and Tuesday night we went to our neighbors house to bathe the girls (thank you guys so much for letting us use your hot water).  

Thank you Lord that it only took until Wednesday morning to get someone to come out.  The repair man was here for 20 minutes and had it fixed.  Thank you again Lord that it was such an easy fix and that all parts were under warranty.  We had a not so bad $60 fee for labor.  But it really does make you think. 

I think of how lucky we are to have running water (let alone it being heated), food on the table, gas for our cars, electricity to help us survive the miserable summers here in AZ.  The list goes on and on.  We all need to take time out of our busy lives to thank the Lord for all of the modern conveniences that He has blessed us with. 

Reflections

October is upon us.  As I look back at September, I wonder where it went.  I remember writing how excited I was to get my Fall decorating done and I usually complete it the first few days of September.  And here we are the first weekend in October and I finally have it done.  It is normally such a joy to do it and this year it was such a chore and an agony.

When you are in a flare-up, all of the weeks just end up blurring together.  You think that only 2-3 weeks have passed, when really it has been 5-6 weeks of a flare-up.  For everyone, time seems to go by way to fast.  But dealing with FM and everything associated with it, time seems to go by even faster.  Before you know it, you have spent months in a flare-up with nothing to show for it.  You suffer in silence and try to act as normal as you can. 

If you are in a flare-up, just keep hanging on.  Learn to only focus on one day at a time or one hour at a time (if it is that bad.)  Focus on all of the blessings that you have.  Ignore the thougths of doubt and despair. We are in this together and will survive it.  We will survive, YOU will survive!

Ding Dong the Binky's Gone!

One stressful moment in our child's life is breaking them of the binkie (well, at least it has been for us).  We have had 3 binkie babies (which I prefer rather than the thumb.)  The first one was so absolutely hard to break, the second one was pretty easy (except for the fact that she stopped taking naps), and my little A. has not been too bad so far.

Everyone varies as to when they think the binkie should go bye-bye.  My thought is usually around age 2.  We weren't very anxious with A. since she is our last baby.  It's been nice to hold onto the baby stage for a little longer.  But usually an opportunity arises that you must take hold of and just run with it.  For two of our girls it was loosing all of the binkies somewhere in the house.

This opportunity arose and I ran with it (hubby was not totally excited about it, but oh well.)  So far, so good.  I am a stand firm, don't give in and A. is doing pretty good.  Bed time and naps times are still a bit of a struggle, but they are getting better.  (I use the super nanny trick of putting them back in their bed over and over and it has been working.)

Here are a few tips to help you break your little one from the binkie:

*Put the binkie inside of a Build-A-Bear.  That way they still have the binkie to hold but not put in their mouth.  (My hubby came up with this idea and that's what worked with our #1.)

*Loose all of the binkies and just tough it out with crying and so forth - DON'T GIVE IN!!!!
*Put a small hole/cut the tip off in the binkies so that is affects the sucking and they don't want them anymore, you will still probably have to deal with some crying, etc., but DON'T GIVE IN!!!
*Start limiting the binkie to bed time and car time only.  Make them leave it at home or in the car when you are out in public or with friends.
*If they are old enough, have your dentist have a talk with them and then have then turn over the binkies to the dentist.


Worst case you have some whining and crying for a day or two, but eventually they will forget all about them.  What have you tried?

Random Mommy Thought

Tweezers work great for retrieving a  

             corn kernel out of your toddlers nose.

Fibro Friday - Help Yourself!

When you suffer from FM, you sometimes wonder "what can I do to help make things easier?" I have never asked a doctor this question, but have thought about it. With doing research and talking to others on FM forums, I found this great article. (To read the full article, click on the link below.)


Here are 3 Things That Patients Can Do For Themselves:


1. Self-education. Understanding the battlefield is often half the battle. As people with fibromyalgia develop a better understanding of their condition, it becomes far easier to cope with and address.
2. Stress reduction. Reducing stress can help with muscle relaxation and improve non-Rapid Eye Movement (non-REM) sleep. Inadequate sleep of this type is felt to play a central role in promoting the symptoms of fibromyalgia.
3. Exercise. Aerobic activities that exercise the muscles can work together with the methods above to greatly relieve the symptoms of fibromyalgia. Many experts on fibromyalgia feel that exercise works by promoting the non-REM sleep that is commonly deficient in patients with this illness.




Hopefully this might help you and your battle. Keep on fighting the fight and don't give up!

Take Charge!

It's Time to Take Charge!

Today I go to my new/old Rheumatologist:

Ever since I was diagnosed, I have seen a Rheumatologist (that's actually who diagnosed me).  Now there have been several long periods (3 to be exact) where they have not been able to treat me because I was either pregnant or nursing.  During that time, I would just try to survive my symptoms as best as I could.  And I have still had that mindset until recently.  Why should I live like that anymore?  Why not take advantage of the medications and treatments available to me?  Since there are no more children that will be taking over my body, it's time I take charge of my body.  I am now armed with a new confidence and an understanding of FM and I am prepared to take a more active role in treatment of my symptoms.

Due to an insurance change, I am going back to my doc that I last saw in 2006.  With looking back, I don't think my doctor or I was doing all that was possible to treat my FM.  I think that my new/old doc is a good doctor (obviously I have chosen to go back to her), but I just never knew what questions to ask and just did what she told me.  I was also unaware of all of the other illnesses/symptoms that I have that are actually associated with FM.  So how can the doctor treat you if you don't tell the doctor what you are experiencing?  And how can you know what to tell the doctor if you haven't educated yourself on your illness and all that's associated with it?  It really takes a joint effort on your part and your doctors.

There are a few states that have actual FM centers that treat just FM.  (But I don't have that in AZ.)  I would really like to be able to go to one of these centers one day, but I am confident that between me and my new/old doc I will start seeing some improvement in my life.  I am excited to try and get my pain more under control or the proper medicine to treatment when it is at it's worst.  I am excited on getting some medicine to help with some of the annoinances/side affects that come with FM.  My theory is going to be:  if there is help/treatment available, why not take advantage of it?

It is my body and I am the only one that can be in tune enough with it to help guide and direct the doctors to treat me to the best of their ability.  Today will be a new start to me being in charge of my body, no more putting me aside.  Like I like to say, "if there ain't no mommy, there ain't no family!"  (I don't think I have actually ever said it out loud, but I think it quite often.  And I don't mean to put the hubby's down at all, because I have a great hubby.)