What do you say?

My 5 year old said "What is fibro?".  I think she is confusing it with fiber!  I didn't get a chance to answer her because she siad she was confused and couldn't think of the right word.  So, that buys me a little time to think about how I want to explain it to her.  I feel so grateful that I am explaining something that while unpleasant, isn't life threatening or scarey.  I feel so much pain for mothers who might have to explain something more serious to a child...such as a terminal illness.  I also don't want my daughter to dwell on it and so I am considering never saying the word "Fibro" in front of her again.  I think that it might become the forbidden word.

While at the chiropractor today, I was given some new exercises to do as part of my therapy.  I do them there at the office and while I was doing them, another women was there with me.  She asked me if I had suffered from a back injury.  I said "No" but felt the need to explain.  But, it was a wierd feeling.  I have never told a stranger that I have fibromyalgia.  I blurted it out, quickly.  She gasped and said "That's terrible!!!".  I didn't know what to say.  Yeah- it is terrible.  Yeah - I hate that I have it.  But, it could be a lot worse.  She then said that a friend of hers had it and all I could think to say was "Yeah, it isn't fun".  I wish I would have told her to offer her friend support, I am sure she needs it.  We all do.

Then I had to tell my Chiropractor that I was in pain from the "bad" Dr. last week.  I told her that the last adjustment hurt and that I did really like the Dr., but it was too rough and painful.  I told her that I knew it was "just me and because of the fibro."  I wish I didn't have to explain.  How can you even describe it to someone?  No wonder the Doctors took so long to diagnose me, I was unable to put it into words.

My flu shot is still sore and a red circle surrounds it, about the size of a silver dollar.  I think its normal though, for someone with such sensitive skin. 

Headaches

It has been a very bad weekend.  On Friday afternoon, I went to the chiropractor.  As I mentioned in earlier posts, the normal Dr. I see isn't there on Friday.  So, a different Dr. did the adjustment.  It was the same Dr. that did it last week and she is just not at all understanding of a patient with fibro.  The minute she put her hands on my lower back, I felt pain.  Not just any pain, the fibro sore skin, bruised pain.  She pushed hard on my back and just kept on going.  When she got to my neck and turned it to the side, it wouldn't crack.  I felt so sore.  I left with a headache.  I will never go to this Dr. again.  I have seen her twice now and both times she has hurt me.

Just to re-iterate a previous post, if you are considering seeing a chiropractor, make sure they have experience in treating fibromyalgia.  It should not hurt.  Although I had this bad experience (that continued to cause lingering pain all weekend) I still believe there is a place for chiropractic treatment for fibro.  Overall, my quality of life has improved since I started going.  But, the Dr. I normally see is very gentle and she does not hurt me.  When I leave, I usually feel better than before I went in.  She touches my back gently and I can tell she really tries to be extra careful.  We need more of these types of chiropractors! 

So, I was in a bit of a flare all weekend with non-stop headaches.  I worked all day Friday, went straight to the bad chiropractor (lol), then headed to friend's house to meet up with my husband and kids.  I quickly ate some pizza and then started to get on their Halloween costumes.  We took them to a Halloween event at the public library and then home!  So, I left the house at 7:00am and didn't get home until around 8:30pm.  Then, by the time I got the kids to bed I was ready to collapse.

Moving on to Saturday...  My mother-in-law had a jewlery party Saturday morning at 10am.  I got up, showered, packed the kids halloween costumes, got my daughter ready for swimming lessons and headed to the jewlery party (alone).  I stayed for an hour, bought some jewlery (mostly Christmas presents- yay), and then headed over to the healthclub where my daughter was at her swimming lessons.  I got her out of the pool at 11:30am and helped her shower and get dressed.  By now we are approaching noon and my husband and I decide to take the kids to Panera bread for lunch.  My head is still pounding from the adjustment on Friday.

I took two Tyelenol and that kept the headache at bay.  After lunch, my husband left to get some work done and I took the kids to a friend's neighborhood for a Halloween parade.  The rain held off, but it was chilly.  It was also a 2 mile walk.  I had the double stroller b/c I knew my 3 year old would never go the distance.  But, this gave my 5 year old the temptation to sit too.  Walking up and down the hills pushing 75 lbs was not easy.  Plus, it was chilly and cloudy and the sun was nowhere in sight.  It was a great time for the kids though and I made it.  By the time we marched in the parade and then got back to my friend's house, it was getting close to dinner time.  The kids were hungry, so I met my husband at a restaurant for dinner.  I hate eating out so much.  But, once again, I left the house at 9:30am and was still not home in time to cook dinner.  If I were to leave and go home, start to cook, the kids would be in complete melt-down mode.  They were beyond giving a snack to hold them over.  They had goodies at the parade and they were coming down from the sugar high.  They needed dinner and they needed it fast.  I was also getting extremely tired and hungry myself.  All I could do was imagine myself snuggled in front of the fireplace under a warm blanket.  I kept telling myself that was what I was going to do when I got home.  But, I ended up going straight to bed after the kids.  It had been a long, cold day.

Sunday came too fast.  The kids were wonderful in that they let my husband and I sleep until 9:30am.  They slept until 8:30am and then played for awhile before waking us up.  We all got up and had a nice breakfast together.  My husband was so sweet, he got up and made coffee and eggs.  He takes such good care of us.

My daughter has been wanting to go to the healthclub playroom for awhile now.  We haven't been there much lately and when we do go, she is usually swimming so she doesn't get to go to the playroom.  So, after lunch, I packed up the kids and headed off to the gym.  I am so glad I did this.  I took 45 minutes to myself and just walked the track.  I am staying off the treadmills for awhile to see if I can get just as much exercise on the track.  It was great to steal some time to myself and the kids love being there in the playroom.  So, it worked out great.  A long Target shopping trip followed and once again, home at 6pm and the kids are starving.  It was cereal for dinner.

It was not the healthiest of weekends as far as eating goes, but I just can't seem to slow down.  As it was, I decided not to take the kids to the zoo yesterday, although it was a beautiful day.  A "fibro choice" - no zoo.  I knew that might in fact put me over the edge. 

So, here we are - Monday morning and I am bracing myself for another long day.  I will leave work and head straight to the in-laws for my father-in-laws birthday.  At least I won't have to worry about dinner again!  But, the house is still a mess and I didn't get anything done all weekend.

My legs are a little sore from doing lunges while walking (not sure how to spell that!).  But, they feel only sore - like anyone would feel after not using a muscle in awhile.  Sometimes when I exercise, I can hardly walk the next day.  I mean, I can walk, but limping around and pain with each step.  Today, I really think this is the kind of soreness most people would have - its not fibro!

I am still having a headache though.  I will take more tyelenol and talk to the "good" chiropractor tomorrow about this experience.  And, I just wish I could stay up a little later tonight.  I am still sleeping a lot and struggling to wake up everyday.  I wish I could be either a morning person or night person.  Right now, I am neither.

Being Mom

There is nothing I enjoy more than being a mother to my 5 year old daughter and my 3 year old son.

Part of the reason I am trying the chiropractic care is because of how much I love them.  I have to pull through this.  My daughter has been saying things like "Ouch, my legs hurt" or "Oh, my whole body hurts".  It makes me want to cry.  This is a learned behavior on her end, she looks up to me.  She wants to be me.  I want her to see me the way I feel inside - ready to do so many fun things and take on the world.  Unfortunately, most of the time she is seeing the way I feel on the oustide.  Pain and fatigue.

Sometimes, we will go out for a Saturday morning of activity and running errands.  We might be gone from 10 - 2pm and when we get home I almost always need to lay down for a few minutes.  Sometimes I need to nap.  It is frustrating for me and its not how I want my children to see.

There is also the part of being wife.  I am married to a truly wonderful man.  He is supportive, but I know that he is frustrated.  His "partner" no longer exists.  Maybe it's more like his soulmate is gone.  When we were younger and I didn't yet have this, we would go out all night.  We had so much fun and we were always ready to go.  Now, I go to bed at 8pm.  Sometimes 9pm, but its usually shortly after the kids are asleep.  On a bad day, its even before they are asleep, but in bed.

He stays up and watches tv by himself.  Sometimes he works.  Sometimes he does laundry or tinkers in the garage.  Either way, he has given up on asking me to hang out with him.  It is sad.  I would rather sleep than cuddle which is one of the cruelest parts of this disorder.  I know he is lonely and he wants me back.  He is one of the only people that could possibly understand because he lives with it.  In a sense, he has this too.  It has changed his life.

Austin and Mercedes (on Mercedes' 1st day of kindergarten)

My boy

Sweet girl

I need to get better.