Tuesday, December 27, 2011

Christmas Review

Christmas is over.  Clean up is beginning.  I can't say that I am all that sad this year that is it over.  Normally I have post Christmas blues, but this year with how I have been flaring and not being able to do all the things I like to do with my boys I am just glad it is over.

After a few days of Christmas get togethers I was pushed to my limits.  Pain and fatigue took over.  Monday was a day of pain medicine and resting especially since even with the meds I was unable to sleep Christmas night because of the pain.

We did bring home our 17 year old niece with us Christmas.  Chloe is going to help the boys clean their rooms properly for me so we can put away their gifts and go through clothes and see what is up there that fits and what does not and can be donated.  This is a big help for me.  Chloe has stayed with us off and on her whole life so she fits in just like the boys except she will help me out.


I plan to at the least have the main area back in shape, tree down, and gifts put away by Friday.  Not too big of a task as long as the upstairs gets done.  Thursday will be a run to Detroit Metro Airport to pick up my friends 2 boys who are flying back from a visit to Florida with mom and her boyfriend.  Nicholas is excited to see Ricky and Michael as they are best friends  and they moved to Charlotte with their real dad so they don't spend as much time together.

Very few returns which is nice.  I think we will do that on Thursday as well before the airport if possible.  Three items is our fault.  One I bought thinking of one Jacob and it was on Nicholas's list, then two "Cars 2" movies as I forgot we had bought one already and then Caleb got one from and Aunt and Uncle.  Jacob needs to exchange a Nerf gun as he got the same one as he got last year.  So thankfully we don't have many to do and many a line to stand in.  Also why I am waiting a few days for the crowds to get smaller.

Now I am looking forward to New Year's Eve with some of my best friends ever.  Hoping that next year I will be healthier and able to do more so I can make great memories for my boys and husband.  Now is time to recover and move one.


Tuesday, December 20, 2011

Link Sharing - Counting Down the Days

Wanted to share this article.  It relates to the last post I did about managing your holidays so you can enjoy by keeping them simple.  There are some great tips here.  I hope it help.



Counting Down the Days - Tuesday, December 21 2010
0 CommentsAs the days wind down to Christmas, I can feel my anxiety growing by leaps and bounds. Even with my pared-down expectations and advance planning, there’s still so much to do. I know it’s time to scale back once more, and I’m coming to terms with the fact I probably won’t get it all done. So here are the makings of my last-minute Fibromyalgia and Chronic Fatigue Holiday Survival Guide.
Gifts. I still have names on my list, but I’m going to forget about what to get and how to organize my day so I don’t have to drive so much. I’m not going to wrap. I’m not going to ship. I’m turning to gift cards that can be purchased and delivered online. (I will choose online businesses from which I know the recipients would buy stuff.)
Cards. I’ve seriously cut back on my card list. I only send to people I don’t see. And I no longer do handwritten notes with each card. Yes, I’ve succumbed to the typed Christmas letter. For a while I felt guilty about that decision, but I’ve tried to make it sound fun rather than like a documentary. These will probably make it out the door by Christmas, but I doubt they’ll arrive by Christmas. And I’ve decided that’s okay. (You can take this one step simpler and send e-cards. This online card shop is a favorite of mine.)
Food. I’ve given up on the full-course turkey dinner idea this year. Instead, I’m getting trays of vegetables, fruits and deli meats, plus a few salads, from my grocery store. We’ll start a very simple slow-cooker meal in the morning, which will fill the house with good cooking smells all day, and if we’re still hungry after we’ve spent our day nibbling, we’ll dish up bowls of stew. And as my grandmother used to say with a wink, Sara Lee was very good at what she did. (Dishes are festively-decorated, sturdy paper, and utensils are color-coordinated and disposable--minimal clean-up.)
Decorating. If it’s not up now, it’s not going up unless someone else does the work. In my case, very little is up, which means there will be very little to take down (there’s a silver lining in every cloud!). My decorating this year will be aural: we plan to listen to lots of Christmas music.
Laying Low. I’m going to introduce anyone spending time with me over the next few days to my refrigerator. I will extend full household privileges to root through my cupboards and help themselves to whatever they find. (I will not feel guilty that my cupboards aren’t spic and span.) And, because socializing this week would probably send me through the roof, I have declined invitations, with explanations and sincere apologies. For people I would love to see but can’t, I plan to call on or around Christmas day. I will make one exception: if someone invites me to a quiet meal for which I don’t need to get dressed up, I’ll go.
Timing. I’ve skirted around this one, but here it is point blank: if I can’t get something done for someone else by Christmas day, then I’ll get it done in the days after Christmas. It’s okay if Christmas extends beyond the actual day. Really!
As the days tick down, try to remember what’s important. Fill your head with positive, nurturing messages. The holidays are about giving … not things, but love. Having Fibromyalgia and Chronic Fatigue may mean you have a harder time doing as much as you used to do; it doesn’t mean you love anyone any less.
Extend that love to yourself. Don’t stint on sleep. Make time to rest when you feel yourself approaching your limit. Remember to eat (remember to breathe deep relaxing breaths!). Laugh and smile and hug those you love as often as you can. Sidestep the guilt. Try not to accept the burden of other people’s expectations of who you should be, and be realistic about who you are and can be. Tell yourself it won’t always be this way, that as your treatment progresses, you will be able to do more.
Perhaps you and I will discover a valuable lesson from our efforts to trim the unnecessary from our holiday celebrations. I expect that if we look carefully and open ourselves to the possibilities, we may find less is more. This could be one of our most meaningful holidays ever.
Be on the lookout with me. 

Saturday, December 17, 2011

Holiday Shortcuts a Must This Year

I am feeling like a failure this year to my boys for the holidays.  As I am writing this I am in tears from pain and letting my boys and husband down, but I am doing this so you that suffer with Fibromyalgia know you are not alone.  This is one of the hardest times of the year for us as we have more to do from decorating and get together.  I have an added scare with my first mammogram which has just pushed me over the edge.

I was in so much pain last night I took Vicoden.  Which makes me have a "hangover" the next day so I was asleep on and off all morning and did not get Jacob and Caleb uptown to Santa, Nicholas is at a camp out for Boy Scouts and I really don't think he can still believe at 13 years old.  So there is one guilty feeling.  Then I wanted to bake some cookies today, even if they were the pre-cut ones.  Again, I just can't do it.  I could barely pick up my laptop.

I know why I am flaring and it is expected, but it does not make the hurt and guilt go away.  I had my 2nd mammogram and ultrasound on Thursday.  Not only painful positions but the stress.  Fortunately it is OK.  Just some cysts to follow, but a few weeks of stress and worry.  Then yesterday I  threw Caleb's class holiday party, which was fun and great to do, but it took its toll on my body with everything combined.

Tomorrow I am looking forward to going to a friend's for a little Christmas party with some of my best friends. That will be OK, but we all take a appetizer to pass and I love to make them and do something really good and different, but I am thinking it will be more of a antipasto platter with store bought stuff.  I really don't think I can be out there cooking and stuff.

I have a ton of wrapping to do this coming week, especially the stuff for the boys before they are out of school.     Going to have friends from Florida spend one night when they come up to get their kids for Christmas break.  Again a good thing, but a bit more to add to the list.  We will sit back and have some fun catching up which is good for me and they understand all I go through so I don't have to panic about the house and stuff too much.

Right now I am just laying here wondering if I should take some pain medicine and just give up.  I want this time of year to be wonderful for my family and myself.  I need to figure out what i can do to make it seem festive without killing myself.  Maybe I do need today to be a down day, then I can go from here and get things done. Shortcuts will be needed.  Maybe go to dollar store and all non Santa gifts are in bags this year or something.  Maybe buy a platter of cookies somewhere so we can enjoy them and just not the baking part this year.  I don't know right now, but I do know I have to do somethings to make it easier so I can be full force for the really important things.  I hope you are figuring out ways to make the holidays enjoyable and pain free with shortcuts so you have the energy to do what you feel is important.


Monday, December 5, 2011

Managing Mornings

Managing Mornings

I found this about article linked above and wanted to share. I think these are great ideas for starting your day off to the right start. I know I cannot just jump out of bed and start my day. I need it to start slowly.

I set my alarm for a few minutes before my boys get up and I have it snooze a few times just to give me time to sort of wake on my own when I have to get up. Fortunately my boys are great at getting ready for school most mornings so I can stay in bed and slowly get moving. I know what they are up to as our bedroom is on the main floor and with the door open I can see the kitchen and dining room. As long as they are doing as they are suppose to all goes well.

Once they leave for school I usually will make coffee and enjoy or if I have to leave I will take a hot shower. All depends if I will be home for the whole day or not. I like being able to have some coffee and eat then take a shower. I will dress accordingly. At home I am comfortable with yoga or pajama pants and tops that won't be uncomfortable. No need to jeans or dress pants that may dig into me.

I do have a heated mattress pad and I will turn that on or jump up and turn up the electric heater. We keep our heat down because we use propane which is expensive. My husband can't have it too warm at night or it makes him cough and flares his allergies so a dual sided mattress pad and our own blankets solve that problem. It is hard to get up into a cold room and it can freeze up the muscle instantly.

So try some of the ideas in the article or some of mine. See if they help you gain a little more control of your mornings and hopefully make your day just a bit better. Fibromyalgia affect so many things we don't think of so every little thing we find is worth a try as long as it is a safe thing to do.

Sunday, December 4, 2011

A Fibro Christmas Song!

I stumbled on this in an email I receive from About.com on Fibromyalgia.  I thought it was be nice to share and put some holiday humor to our condition.  It is funny to me as it is so true.  I know the pretense is not funny and very serious.  I went shopping all day yesterday with some of my best girls and today is a day of recovery for me.  I am not as bad as I have been in the past, but muscles ache and I want to sleep.

First Caleb our yougest came in to snuggle, then Tucker the dog started barking to go out.  So I go let him out, and he takes off so, for a bit we are trying to call him back in.  Just enough to "wake" me up.  So some coffee, TV, and computer time for a bit.  I am sure a nap to come or at least a day of lounging around.  Probably will work on updating Christmas shopping list and looking for ideas for a first grade holiday party since I took that on.

So read the song.  If you can sing, sing it and sing it loud.  Just a little something to know you are not alone, with just a little humor so I think, though I do have a dark sense of humor.  Hope you enjoy.



A Fibro Christmas Song!
by Kim
Sing to the tune of "Walking in a Winter Wonderland"

Muscle scream can you hear em,
No medication can cheer em,
I'm up all night,
I look a fright,
My Fibro's Flaring from these Holidays.

I decorated a little,
Had to stop in the middle,
My arms just don't work,
my legs started to jerk,
My Fibro's Flaring from these Holidays.

In the livingroom lays the Christmas tree,
It is drying up & it's turning brown,
By the time I start
to decorate it,
the lights will burn the darn thing to the ground.

Later on I'll try wrappin,
But I doubt It will happen,
No wonder why I'm a grouch,
suffering on the couch,
My Fibro's ruining my whole Holiday.

http://chronicfatigue.about.com/b/2011/11/27/a-fibromyalgia-christmas-song.htm?nl=1


Thursday, December 1, 2011

Help with Online Shopping to Help You

With Fibromyalgia it can be hard at times to get out and fight the crowds at the stores for your holiday shopping.  This year I am doing a lot more online shopping. This is helping me save my energy for the important things during the holiday season, like baking cookies with my boys and being able to enjoy the visits with relatives and friends since these to me is what what holidays are about.

I have already ordered and received several gifts.  Some are from the Etsy.com site that I have friends selling homemade items on, other are from other retailers.  I am actually going to sit down with my husband and figure out the boys list and see if I can do one large Toys R Us order so I don't have to tromp through that store.  Not fun on a good day.

I thought as a way to help you with Fibromyalgia as well as every one with the busy schedules I would do some postings with special offers I receive.  These offer will help you save money as you online shop.  I know we need to save money and many of us with Fibromyalgia don't work because of the pain we suffer so saving money is important.

Below are a few I have came across this morning either in my email inbox or other places online.

vocalpoint.com/eStoreHoliday
About eStore:
The eStore is an independent online retailer,
owned and operated by eStore Retail Services,
featuring P&G brands. Now for the holidays you
can get FREE Shipping with a $25 purchase, as
well as 15% OFF and FREE gift wrap for
Vocalpoint members.













We have 12 days of exclusive offers to inspire the holiday spirit and make your shopping easier. Enjoy sweet prices on holiday treats and Starbucks® Christmas Blend coffee, specially-priced iconic holiday mugs - and even an easy way to get daily brewed coffee for a month with just one purchase. Find out more at Starbucks.com/merry.
















December 1-5
Free Shipping with $50 order, but coupons and Kohl's Cash is deducted then you get free shipping if you spend $50 beyond the discounts. (Found that out yesterday when trying to place an order and use my Kohl's Cash from Black Friday.)
Promo Code for 20% off:  Holly20













Remember to also use any rewards programs you belong to like Mypoints.  They can save you money or give you points or money towards other items.  Also opting into emails for the companies you shop will keep you updated with the latest sales and when they cut of shipping for Christmas delivery.

Good luck on saving money, saving energy, and enjoying the holidays with your loved ones.

Wednesday, November 30, 2011

Mammogram Part 2

Even though I did not think it would happen, it did.  I was told to possibly expect it, but I way trying that positive thinking thing.  Needless to say I have a call back for more images and a possible ultrasound.  It seems relatively normal with your first one as they have nothing to compare to.

I am a worrier so having to go back in for another mammogram has me stressing out just a bit.  I was told by the technician, friends, family, nurse, etc., that this happens and not to worry.  So now I freaked out, cried, and got my body even more knotted up, I think I am now looking at it a bit better.  I know me, I will worry, but will try to keep it under control.

If for any reason they have found something it is best to know and get treatment.  If you catch things early they you have a good chance of a successful recovery.  I know people who have put off getting things checked and did not make it, and those that got in early and were cured. 

I got back December 15th for the follow up so I would assume if they were too worried I'd be in sooner so I am taking that as a good sign.  I have to do this, because I have three boys who need their mom and a husband who needs his wife.  So by taking care of myself I am taking care of my family.

My First Mammogram

Yesterday I had my very first mammogram.  I was concerned it would hurt as many had told me they would.  I was fortunate as I did not feel it really hurt, just a bit of pressure.  Or I should say the mammogram part did not hurt.  The positioning especially on the second view did.

The part that hurt was due to my Fibromyalgia.  I am really spasmed in a few spots and one is my shoulders especially my left one.  To get into the position they needed me in to get the image it pulled on that area.  By time I got home it was time to pull out the Vicoden and take it.

Even though I took Vicoden again before bed I was still awake a lot from the pain in my shoulder.  It is really hurting today.  I would like to take pain medicine, but I am avoiding it if at all possible.  I just hate being a Zombie, plus Jacob, our middle guy, came home sick from school so I want to be alert to take care of him.  My boys comfort comes before mine whenever possible and necessary.  Part of being a mom and especially a mom with Fibromyalgia.

I am a firm believer in doing health screenings and I am not trying to discourage it.  What I want is for you to plan for any possible flares.  If possible don't go for your mammograms when you are flaring like I did.  Also plan to rest afterwards as it may stretch your muscles and make them ache.  Do what your body needs to prevent and/or recover from a hard task.

Mammograms are extremely important to have done whether or not there is a family history.  Most breast cancers and other conditions have no family history.  Just try and make the experience the best you can for yourself and others. 

Tuesday, November 22, 2011

Thanksgiving Week 2011

Most people a very busy week prepping for Thanksgiving.  I am pretty lucky as I don't have to cook dinner.  We are going to Ed's sisters and she has asked me to bring a sweet potato dish.  I have a very easy recipe that even my father in law likes and he doesn't like much so I am making that.  I am sure one or more of my boys will help me too.  I will also probably grab a bottle or 2 of wine to take, though if you have Fibromyalgia you should go easy or avoid.

I came off a very stressful weekend with my 2 youngest boys.  Jacob and Caleb were handfuls on Saturday.  We were suppose to go out for a very dear friend's birthday and we were going to allow Nicholas to babysit.  He has been showing a bit more responsibility and we want to show him we noticed.  Well we had to cancel as Jacob and Caleb would not listen to me at all and were out of control, so of course I could not leave them with Nicholas and it was too late to find another babysitter.  This stressed me out and made me feel so guilty and depressed to the point I could barely move.

Sunday was pretty much spent in bed in pain.  Waking up Monday was even worse.  To help me I treated myself to a massage.  It was a Therapeutic Massage so it did the Myofacial Release and Trigger Points.  The therapists was great.  Thank you Meagan at Sacred Touch Massage Therapy in Brooklyn, MI.  I could barely drive there and turn for the curves, but on the way home I notices a huge difference.  I did the ice, drank the water and such they told me to do to promote healing.  Yes I was and am sore, but it is a different pain and I can move.

Today is still a day of mostly relaxing for me as I am still healing from the massage.  I am still sore in the areas that were really worked hard.  Though I am trying to do laundry as that is a good job on a down day as I can do it in spurts.

I am a Black Friday shopper and I yet know what time I will be out.  This is why I am taking care of myself so much this week as I go with friends every year and have gone every year since I have know my friend Tonya, so something like 17-18 years.  I don't want to let them down and miss out.  I also know I will need a few days of recovery after words.  It will throw off my sleep and the trudging around stores and carrying packages will take a toll, but this is one of those things I do for emotional well being even though I will probably pay physically for it.  Mental is as important as physical well being and many articles I read state that  We need time with friends and family.

So over the next few days I am just doing a few things I must, taking care of my body, and preparing for spending time with my husband's family for Thanksgiving and my Black Friday shopping trip.  I have some gifts bought, ordered, or know what I am getting.  Will be setting down with boys and making a Santa list and a list I can tell family and friends they want. 

So remember whether you are hosting Thanksgiving or going to visit family of friends don't push your body too hard, get good rest, and enjoy.  Happy Thanksgiving and even though we have Fibromyalgia look for the important blessings in your life.

Wednesday, November 16, 2011

Letting Down Nicholas

Yesterday was one of those hard day with Fibromyalgia and surgery recovery.  I have to let down Nicholas our 13 year old son.  Out of the blue I got a severe headache.  The type pain medicine does not do much for.

Nicholas had a Boy Scout Troop Meeting last night, and there was no way I could drive with the headache I had, plus I did end up taking pain medicine to bring it into a bit of control.  We attempted to find a ride for him, but since it was opening day of Deer Hunting Season here in Michigan many of the boys were out in the woods hunting with there dads.  So I hope he did not miss too much.

Nicholas was great.  He really sounded sincere when he said it was OK and that he understood, but as his mom I did not think it was OK.  I felt terrible as he has really been trying to be good and do as we ask of him.  Plus Ed, dad and hubby, is working extra crazy hours this week so he couldn't help and take Nicholas either. 

I have also been having a lot of overall pain the last fee days so Nicholas is helping with his brothers some.  It is so hard to have to have him do this.  I mean once in a while is fine and expected, but lately  I have had a hard time.  I am flaring a lot easier and I know a lot is because I have not been as active and now we are getting into colder weather and in Michigan it can be warm one day and really cold the next this time of year.  That is no fun with Fibromyalgia.  It is also affecting my sinus comfort as I am still healing.

Now I just got home from my ENT doctor and he did a Nasal Vacuum on my sinuses. The numbing medicine is wearing off and I am beginning to have that wonderful headache again.  I have prepared by stopping at the store and buying Pasties (Jacob has been asking for them) so they can just be popped in over.  As much as I don't want to be a Zombie I am thinking I may need to, hence again Nicholas will need to help a bit with things. 

It is so hard to live with this and have to lean on my family, especially my boys.  I am so far behind on everything.  I am tired of the pain, and I am sure they are tired of taking care of me.  I know it affects my guys.  I know my husband Ed understands, and possibly Nicholas.  I am not so sure about the other two.  I try not to feel guilty as it feeds the pain and depression and then a vicious cycle starts, but it is hard not to.  I just try to tell myself there are others a lot worse off and we all have our challenges.  For me this is mine.  Balancing a painful, energy zapping condition with everything else in life.

Monday, November 14, 2011

Holiday Shopping Tips

Holiday shopping is on us.  Some are done, some are just starting, and some have done nothing as of yet.  I am trying to get organized and make a shopping list to make life easier.  When you have Fibromyalgia it is important to try and make life at the Holidays as easy as possible.  I am looking at ways to do that.

First thing that I think is important is to make a list of who you must buy for.  Next is great to surf the Internet for ideas.  I also try to keep a list going all year not only for holidays but for birthdays and such.  When possible I try to buy if I see something during the year, but if not possible I add to list.  Right now that is what I am doing, seeing what is bought, who I have to buy for, and looking for ideas, which includes sitting down with my 3 boys and making lists.

For my boys we make 2 lists.  One for Santa and one other I can give ideas to other or use myself.  I like being able to just go in and grab.  I also limit the boys to no more then 3 items to ask Santa for, though unfortunately I think I have 2 boys that no longer believe.  This way I don't have to beat the payment looking for too much.  I also hope it is teaching them not to be too greedy.

Over the years for financial reasons and the lack of ideas we have cut from our gift buying.  I think it would be great for everyone to look over there lists and see where you can cut.  You need to make life easier.  I would much rather focus on family and friends then stressing on gifts.  That is really how we all should be looking at the holidays.  I know a day of shopping will put me in bed for days, so if I really don't need to get a  gift I talk to those people and explain why not to buy for one another.  I try to maybe make plans for a lunch or something.  Spending time together is much more important then gifts.

I am also this year trying to shop locally some.  Using the small unique shops close by that I can stop in real quick and not a huge shopping trip.  There is a large push to help the economy buy using these places and since they are small and in the area where you already are it is not a huge drawn out process to pop in and look for gifts, and you are supporting your community and friends.

Another thing I am doing is checking with my friend that do crafts.  I am looking at purchasing homemade items and such.  A lot of this is either locally or online.  Again an easy way to shop and usually the gifts are much nice then some mass produced items.  Most of the time it can be custom made to exactly what you want.  So think of buying from your friends that are crafty.  I know I already have a few items to purchase that are homemade and all I need to do is order and it will be delivered to my door.

I hope some of the tips and ideas I have came across and have thought of to try and make Holiday shopping easier helps.  Please share any and all tips you have learn to do while trying to take the pain and stress out of your Holiday shopping.  It is great to help one another.



Friday, November 11, 2011

Friend, That's What Matters

I am very happy that my dear friend, Kathy has come to visit.  She is only up from Florida for one day, but I get to spend the day with her and her kids.  I miss her terribly since we were basically living across the field from one another till this past summer.  She will also be back for Thanksgiving so I should be able to see her then too.

I love all my friends dearly.  I am very blessed to have them in my life whether they are friends from when I was a little child or friends I have recently met.  Some are only online so far, but they support me as much as the ones that are local. 

I find you need at least a few good friends you can rely on in life no matter what.  That don't judge you and accept you for who you are.  They pick you up if you make a mistake and help you fix it, not get mad and storm off and disown you.  Those friends are what help make a person happy in life.  I am blessed to have so many that are like this.

My friends understand my struggles with Fibromyalgia, raising my boys, making a home with my wonderful husband.  They help when needed even if not wanted.  They know I need it, and make me accept it.  They accept me entirely for who I am, not what I do or do not have.

So make sure you find yourself a few good friends, at least one, that you can rely on and lean on when you needed.  Then return the favor when they are in need.  This is what life is all about.  Family and friends.  Nothing else really matters.  With this you can get through your struggles with Fibromyalgia or any other struggles you face day to day.  I know it helps me.  Thank you to all my wonderful friends.  I love each and every one of you.

Tuesday, November 8, 2011

Doctor Appointment Easy

Well, all the stress and anxiety awaiting my doctor's visit was pointless.  It was a very easy appointment.  Since I am on the 3 year plan for pap smears I did not have to endure that torture.  No blood work needed as I had that done in the summer when I was combating the Serotonin Syndrome.  Only thing that was not fun was the flu shot.  Well nothing is really fun, but I am sure you know what I mean.

Everything is finally looking good.  Still a bit of healing and I need to lose weight as I gained back everything I lost a couple of years ago, but that is what happens when you are down for so long and M&M's keep ending up the house.  LOL!  My weight loss and exercise goal is to start after the first of the year.  I need to finish healing and I know myself well enough to know that the holiday season is not a good time to start a weight loss program.

The flu shot was rough.  It was only a little prick, but it sent pain up to my neck.  With that and the things I did yesterday I am flaring today.  A flare from the shot is much better then a flare from the flu and the flu so get you shot or mist.  I had to get the shot because of my sinus recovery.  Everything is starting to really hurt so I will be taking Vicoden and resting.  I did take care of errands and got dinner into crock pot so my family can eat and not have to fend for themselves too much. 


I hope through the Vicoden fog and flaring I can get some more done this evening as I have a friend flying in for 2 days.  If not I pray my boys will help, but they haven't been cooperative at all lately.  Fortunately my friend knows how our house has been and loves us for us and will help if she can.  Just more important to take care of me so I can enjoy our time together.

So finally after a year of one ailment or another I finally feel things looking up.  At least in the health area.  We raised my Cymbalta back up to the level I was on before all the Serotonin stuff so I hope some of the aches and pains will be better and also as I get more active again will help as long as I remember step by step and not to push too much.  I am very happy with today's results.

Monday, November 7, 2011

Yearly Check Ups

It is that wonderful time of year again.  Yes, check up time for the boys and I.  The fun it all carries for us getting looked, vaccines, and flu shot or mists.

All 3 boys were seen today and have had the flu mist.  All are in great health and growing good.  Nicholas could stand to be a bit more active.  Caleb and Nicholas each had to get a shot as well.  Caleb for only being 6 was so brave and no tears.  Nicholas, 13, thought the world was ending.  LOL!  I am so blessed to have very healthy boys that rarely get sick.

Tomorrow morning is my turn and with that the hope that the next year will be much better medically speaking.  I am still healing from my sinus surgery, but that is all going very well.  My ankle is better and I am still working to get it stronger so I don't have trouble in the future.  The Serotonin Syndrome is at bay I believe.  It will be a time to plan and figure out where to go.  What medicines to continue, which ones to stop and can I start vitamins again? 



I know with being down and not as active when I do something I flare much easier.  Now that I have been feeling a bit better I am trying to accomplish things around the house that no one has really helped with.  Trying to get the boys to help with things like bending over that are difficult, but they are stubborn and do not want to help.  So I am attempting small steps everyday and forcing myself to do something.

I hope we can plan for me to keep on the path of feeling better and get focused back on my Fibromyalgia, Depression, and Anxiety so I can get this all back under control. I hope when this happens I can get back to "my normal".  I won't have the energy and the ability to do what a lot of others do daily and I will have limitations, but now is the time for me to try and take back my life and get my health on the right track.  It has been a long year of one aliment after another and I look forward to good health once again.

I hope other then another few follow ups with the ENT my doctor's visit will be the last one for a while.  I am sure the flu shot will knock me down, but not nearly as much as the flu would.  I will be getting back to some medicines to feel better, and probably routine blood test which I will expect to come back normal as a positive thought and if not I will tackle it, but hoping for the best so I can move on to dieting and exercise and a sense of well being.  That is all I want.

Tuesday, October 11, 2011

Simple Things Hurt

Today is an extremely bad day.  Every part of my body aches, as well as my 2 month sinus infection I am having surgery on Friday.  It is even hurting to type today, so I feel this post is important so those of you who suffer with Fibromyalgia and Chronic Pain know you are not alone.

I need to be preparing for surgery by doing laundry, packing an overnight bag for my boys, and cleaning up what I can.  Yes house is still in chaos as floor is not done.  Instead I am in bed hurting so bad.  I can't even take medicine for the pain as all I can take is Tylenol and that won't even touch a thing until my surgery. 

At least today is not a high powered day.  I only have to get one son to football practice and the another to Scouts if he behaves.  I may have over done it yesterday, but I don't feel like I did all that much.  At least not as much as most moms do daily, especially working ones.  I know this sinus infection is beating my body down.  Sad when you start to look forward to surgery and get more excited each day closer you get.  Though I know it should make me feel better.

At this point today I am not sure what I can do to relieve the pain.  Only thing I really can do is rest and maybe use some heat.  I may search to see if I can find something else to do without medicine.  I just feel like a loser and a bad mom and wife lately as I been flaring and sick.  I can't even get a few loads of laundry done to pack my boys today.  Maybe tomorrow or I will have to some how make them wash the stuff themselves.  It would be better if they would help instead of being little boogers.

Suffering like this is terrible.  Many just don't understand.  I post on Facebook, Twitter, my blog here and the like and I am sure many just think I am whining, but I am venting it out as not to put on my family as much.  Trying to decide if I can ask hubby to grab Jacob for football, but that puts him out and they may be late.  Then I feel guilt.  I don't win either way.  I am sure you understand this if you are in this position. 

I have learned over time to take the time for myself though.  If I don't it just gets worse and worse and then I never get where I can do anything.  So if you are suffering, make it as much as possible a you day.  Every mom needs them, some just need them more then others.



Wednesday, September 21, 2011

Sick Too Long

On month and I am still struggling to get better from the nasty, nasty bug.  School has started back up during this time and it has made it really hard to get the school year off to a good start.  I feel I am not there for the boys they way I would like to be.  I barely can get out of bed.

I have a double ear infection, sinus infection, and just a nasty little bug that won't go away.  I am on my 3rd antibiotic.  I am now also on a nasal spray and inhaler, as well as Mucinex and a cough suppressant at night.  I was put on Ciprofloxacin (Cipro) this last time.  At least I am protected from Anthrax.  LOL!!!  Though the Cipro has me concerned about my ankle surgery as the very first warning on the paper that comes with all new medicines is that it causes tendon problems from tendonitis to tendon rupture.  I really need to stop reading the warnings as it increases my anxiety.

Well,  being sick for a month is also starting to flare up the Fibro.  I am hurting head to toe.  Yes being sick does that, but I have dealt with this I can tell the 2 apart.  The coughing I am doing isn't helping the pain either.  Back is in spasms. 

I am struggling to help my boys as when I get up I go into coughing fits if I exert at all.  I can't even call them downstairs without the cough.  I barely can drive them to football practice.  Trying to get them to do homework is next to impossible.  Chores just forget.  I can't be on them to do it.  I am exhausted much worse then normal.  I feel guilty that I am having trouble cooking a good dinner, sleeping when they are around, and asking my wonderful husband to pick up any slack he can.

I know in my brain I need to rest and ask for help, but in my heart the guilt comes in.  Took me all day to get the energy up to write out the Birthday invitations for Caleb's party.  I did get them done and we are all set except ordering or making a cake.  It was a struggle to make  sure I did it though and more then anything I want him to have his kids party.  We already put it off one year.

If the boys come to me I am happy to help and do what I can or ask Ed to help them, but I am having trouble actively checking folders, planners, and backpacks.  Not able to make them do anything if they decide they don't want to.  They have no respect or empathy it seems at times.

I go for a CT scan of my sinuses tomorrow and maybe that will give answers as to why I won't get better.  I want to feel better so bad so I can go back to being a good mom and wife.

Friday, August 19, 2011

Serotonin Syndrome/Clonazepam Withdrawl

I am learning that you really must be on top of every medications, supplement, or vitamin that is prescribed to you.  Sometimes even asking questions is not enough.  Right now I am being looked at for the possibility of Serotonin Syndrome and less possible Clonazepam withdrawal.  I have ask questions about interactions and always list what I am taking.

I have been seeing 3 doctors, my primary, my orthopedist, and my psychiatrist.  I have been on Cymbalta for quite some time along with Clonazepam.  I start going to U of M Psych clinic and have been seen by 2 doctors there.  The first one puts me on Lexapro slowly and starts to taper off Clonazepam, the second doctor does the same.  These are both residents. They are doctors but schooling in psychiatry overseen by a superior.  I asked inf these medicine are all compatible.  Yes the Cymbalta and Lexapro are, but we don't like to see long term use of the Clonazepam or Valium you have also taken in the past.  OK, so I go fill the prescription.

Then I have surgery for my ankle on July 11th this summer.  All goes well.  A little slow in healing due to the Fibromyalgia.  In the hospital I was put on one aspirin to thin blood and prevent clots from forming.  I asked if OK and they went and research and said for what they were using it for it our ways the risk they are concerned with NSAIDs and Cymbalta.  Ok, I have been told this before for short term usage, just not on regular basis.  For pain I was given Percoset and Flexaril.  I have never had trouble with these medications and I stop them as soon as I can as I don't like the fogginess I get and I get knocked.

When these symptoms of twitch, jerking, and uncontrolled movements I called the doctor, thinking since I just recently went off the Clonazepam I may be going through a withdrawal.  After a discussion with a very snotty nurse I got her to run this by my primary doctor.  When the nurse called back she told me he thinks it might be Serontonin Syndrome, cut the Lexapro in half, and follow up with my psychiatrist.  That is the next call I make.  The psychiatrist thinks it is Clonazepam withdrawal and tells me to keep taking the Lexapro and Cymbalta together.

So that night I did some research on both.  In my opinion I agreed with my primary doctor that it sounded like Serotonin Syndrome.  From the articles I read on sites like the National Institute for Health and WebMD it really did not sound like a withdrawal to me, even though a few symptoms overlapped.  Oh well I thought and went to bed. 

The next morning I was having the twitches and jerking almost constantly.  I call the psychiatrist and he has me take a Clonazepam.  It makes me a bit sleepy and maybe knocks down the symptoms a bit.  By this time I am really worried and my anxiety is soring.  I decided I needed to be seen either at the E.R. or my doctor's office.  I make an appointment with a Resident whose superior is my Primary doctor. 

They both talk to me when I come in to the office.  The resident does an examine and test reflexes and such.  I am so over reactive when my reflexes were tested that they bring in a medical student working in the office and says in front of me we don't see this ofter so would you mind showing the student.  No problem I am willing to help.  They have to learn so how.  They take me off the Lexapro, told me to take one more Clonazepam so I may get a good nights rest. 

At this point I am all good with everything.  I trust my doctors fully and what they said made sense to me.  Well today I get a call from my psychiatrist checking in on me.  Now my doctors emailed him and explained there findings. Now he wants me to go off the Cymbalta too, and start up the Clonazepam again.  I ask a ton of questions as this is not making sense at all.  I can see not taking the Cymbalta, but starting to take the Clonazepam again doesn't sound right.  If I am withdrawing after we tapered it off over several months I would just as soon suffer and be done with it then start the process all over again.

Well, at this point I have a call into my primary doctor and am awaiting a call back. Again I am not sure what to do and how to proceed so I feel better.  I also haven't even brought up about the pharmacy not picking up on these interactions of the Cymbalta, Lexapro, and Flexaril.  So never hesitate to take your treatment into your own hand.  Always ask questions, go with your gut, and research what doctors, nurses, and pharmacists tell you.




http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004531/
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000635/

Wednesday, August 17, 2011

Fall is Creeping In

Wow, summer is flying by really fast this year.  It was so hot and humid in July you could hardly be outside here in Michigan.  Now August is here and you can smell fall on the horizon.  Not only in the air, but all the fall time activities are starting up even though it is about 3 weeks give or a take a few days till school is back in.

Around our household it is all about football right now.  My baby Caleb is playing his first year of flag football.  Jacob is on his second year of tackle.  We are on the fence if we are making Nicholas play.  That decision must be made by this evening.  I am thinking yes as the attitude is taking a new level.

I have spend most of July up to now recovering from surgery on my ankle.  That has been a blessing, even though I am once again healing slower then normal, and we have had to put of physical therapy until September.  I am just so happy to be on the path to getting it better.  I knew going into to it that my Fibromyalgia would probably slow my healing just like when I had my gallbladder out, but surgery is the first step to being able to walk again.  It will be a year in October since it was sprain the first time with multiple since and since it was not getting better I knew surgery was the option.

I think my boys are ready for school to start up even though not a single one will admit it.  I know I am.  I miss a set schedule.  I also hope that I can get my house in order some with them at school and football practices, but even though my husband, Ed is coaching both teams for the two younger boys I may still have to do the running back and forth to get them there.  But I won't have to stay, as their practices are in another town next to us.  I can come back and get them dinner ready.  Through the fall though it will be taking up 4 evening and Saturdays for about a 1/2 day.

Right now I am trying to see what the boys need for school clothes.  I have asked them to clean up their clothes so I can see what fits and doesn't.  Though I am not holding any breathes there.  I have told them no new clothes if not done.  I am sure they each have some and for September and part of October unless winter blows in early they will wear shorts so no real rush except shoes and maybe a 1st day of school outfit.  Our budget is tight from all the things that have happened in the last year or so.  They will only get what they need probably and that truly is better for us all.  Makes me keep up on laundry and less mess they can make.

I am looking forward to fall.  It is my favorite time of the year.  Weather is usually nice until the end.  Though it is sad to see summer going, especially as fast as it has seemed to have gone.  Before I know it I will be cold and hurting more, but I would miss the seasons changing if I lived somewhere they did not change.  So time to move forward to the stage of this year, embrace what is coming, and get my life on track once more.

Tuesday, July 19, 2011

Laundry Items to Help

I am finding a few products that I like to help with laundry.  My first is the Purex 3 in 1 sheets.  They wash, soften, and prevent static cling in the dryer.  I thing for multiple uses.  Also makes shopping easier as it is no heavier the a box of dryer sheets.  With Fibromyalgia I find little things like this a tremendous help.  http://www.purex.com/products/detergents/purex-complete-3-in-1
Another product that is new on the market I received a sample from Vocalpoint.com is Downy Unstoppables.  We all know when you leave laundry in the washer it will start to smell.  I have used it only once so far to remove the smell from clothes left in the washer, though it is meant to be used in as a regular additive.  I used it after not being able to get back to get clothes in the driver because I hurt too  much.  I ran it through a very short wash and everything smelled great, even better then rewashing so it is another new thing for me for those time I just can't get back to it or get the boys to switch it over for me.  Check out Vocal Point (http://www.vocalpoint.com/unstopablesblogger?memberid=77A7D8E0-B7C3-4943-AD45-F51C7735F170)  for more information on this product.  I find a lot of new products I find useful by being a member of this site and being able to test products.  Just another way of finding things to help me with my Fibro and to pass along for others.

Tuesday, July 5, 2011

Alcohol Causes Flare

Ok, we all know that Alcohol is probably not the best for us as a regular part of our diet except maybe an occasion glass of red wine or such.  Well a holiday weekend has come and gone and I indulged a bit.  A bit more then normal.  Two days later I am still feeling the lethary and achiness.  I am assuming it is that and a lack of hydration, plus a weekend of camping and being more active them normal.

Did not get to sleep extra today to catch up as I had an eye appointment to replace glasses our dog, Tucker chewed up.  Trying to get the boys to take care of clothes.  Sort dirty, put away clean.  You would think I am pulling teeth without anethesthia.  I feel bad that I pushed it a bit much.  I don't feel I am asking too much for taking them to the camper.  At least we don't have to pack up a lot with a seasonal site. 

Also my anxiety is sky high.  Not sure  why.  Is it because I drank a bit more them I should have?  Am I getting anxious about my ankle surgery?  Good or bad.  The anxiety makes me hurt more.  Seeing a new doctor for that as my other being a student has moved on to the next level.  Maybe that is it. 

Since I am down and out today and the boys don't want to listen I am hoping I can get a nap and maybe make them too, or at least have them watch a movie or something quiet and relaxing so I can.  I have a lot to prepare for this week, but the rest of today needs to be very low key I think so I can accomplish everything else that needs to be done before surgery on Monday. 

Have you had a few drinks and paid the price with a flare and anxiety?  I would love to hear your input.  I don't drink much, but we had a small gathering at our camper so we kicked back a bit which sometimes you have to do even though you know there are consequences.  Love my friends and needed the break, but next time I also need to dial it back a bit. 

Tuesday, June 28, 2011

I Learned About the 48-Hour Recovery

I just read an interesting article on about.com.  It was discussing how it takes 48 hours to recover from stresses.  It was extremely interesting and I will post the link below, but first I would like to put in my 2 cents.

I have not thought of my my recovery of a Fibro Flare as a 48-Hour Recovery, but as I sit and think about it, it is so true.  After I have a day where I am not in my "normal" activities and push it hard then thought or should have it does take me a few days to feel better.  Thinking about it is about 2 day or 48 hours.  Does this happen when you push through something, a deadline, a project, taking care of kids needs that are out of the ordinary? 

I work from home, but from time to time I go to the training center to work and even though it is not too strenuous it takes its toll.  I usually am not quite myself for a day or 2, then I get back to my "norm".  If I go shopping for the day with a friend, I know the next day needs to be a quiet day.  So I am going to post the link to this article and would love feed back.  I hope it will give you some in site as it did for me.


The 48-Hour Recovery Period in Fibromyalgia & Chronic Fatigue Syndrome

By Adrienne Dellwo, About.com Guide June 27, 2011

http://chronicfatigue.about.com/b/2011/06/27/the-48-hour-recovery-period-in-fibromyalgia-chronic-fatigue-syndrome.htm

Tuesday, June 14, 2011

Positive Pessimist

I am sharing an article I just read.  This is something I truly believe in and something I struggle with.  I am very much a pessimist at heart and one of my favorite sweatshirts has Eeyore on it saying "Positive Pessimist".  That is so me. 

I believe though it is better to optimistic so I try, and try again.  Whether you have a perfect life or one that is falling completely apart, you suffer from an illness or have great health, you are in pain or not, you need to find one thing good and focus on it.  After that look for something else good, etc. 

This article below is just about doing this.  We do need to focus on good and not judge others just like we don't want to be judged.

"Playing The Cards We’re Dealt


I have been accused of being many things in my life, but I can assure you that one of them has never been being “too positive”. I have never been the type of person to intently stare at that glass of water and size it up as being anything but half-empty. It’s the way I’m hardwired. I am, by all definition and description of the word, a pessimist. However, in the ten years that I have been labeled as “sick”, I have fought like hell to change that little unattractive quirk about myself. For example, when most people would see Friday as the beginning of the weekend….I saw it as two days before Monday. As most people see a vacation as a time of relaxation and fun….I see it as a huge pile of work on my desk waiting for me when I get back. See where I am heading with this? It’s almost as if I had trained myself to see the negative in my day to day life three times as fast as the positive. Maybe I did it on purpose as a self-protective mechanism. Or maybe I did it because that’s the type of energy I had surrounded myself with on a day to day basis. I remember as a kid, my mom always saying “you are what you eat.” Well, as an adult I’ve come to the conclusion that the same can be held true to your relationships, environment and attitude. You are what you believe.
Now I know some of you are rolling your eyes at me right now, glancing at your pill bottles on the nightstand and at the pajamas you have been in for three days because the pain hasn’t allowed you to get out of bed to shower, and are about to write this article off as another “mind over matter” piece of crap. To you, I smile, raise my 28 day blinged out pill box from my nightstand, tuck my non-washed hair behind my ear and toast you as I down another 10 pills. See? I’m right there with you. I’m not a doctor, I’m not an expert writing a book, I’m not someone trying to make money off of an illness…..I’m me. I’m one of you. I’m sick.
Let’s get to the point of why I am writing this, and let me state for the record that my opinion may be one that may ruffle some feathers. That’s alright, though. What’s the use of having feathers if they don’t get ruffled once in a while? Ruffled feathers remind us we’re alive and sometimes make us justify the choices we make not only to others, but sometimes to ourselves. In doing that, sometimes we are forced to look in the mirror and to really see ourselves. It wasn’t too long ago that someone forced me to do that….and I didn’t like what I saw. So, instead of expending energy trying to justify an attitude that wasn’t productive, I changed.
How did I change? I stopped being angry. Sounds simple doesn’t it? It isn’t. It isn’t easy to stop being jealous of healthy people. It isn’t easy to sit at your desk at work, feeling as if your body is literally about to break in two from the pain, still unsure of how you got to work that morning because you don’t even remember driving, and hear that person whine about the cold they are getting and how they feel like they are “just going to die at any minute and have to go home,” I know the anger that burns through you like a hot poker as those words sear your heart in two. In your mind all that you hear is “if you only knew…if you only knew what REAL pain felt like. If you only knew what wanting to die felt like.”
News flash…maybe they do.
As perpetually sick people, we tend to live in a bubble and think in terms of OUR sickness….OUR world. Yes, that little cold they have is trivial, but how dare we think they don’t know what real pain is. Maybe they have had open heart surgery? Do we know? Do we ever really know? We ask people every day of our lives not to judge us because “we don’t look sick.” Isn’t it time to practice what we preach?
I spend a lot of time on social media, whether it be twitter or facebook and I am constantly asked the same question: “Don’t you feel bad? You must be in remission, because you don’t really ever post about being sick and you hardly ever complain.”
Of course I do.
fundraise, I write, I try to make people feel less alone. What kind of community would we be if all we did was sit around and try to one-up each other about who felt the worst? I choose to offer solutions and help and support. Is it fair? Hell no. But the fact of the matter is, these are the cards we have been dealt, and we have to learn to find some sort of winning hand in the deck or just fold and leave the table.
I choose to play.
Besides….I have one hell of a poker face.

Article written by senior editor, Stephanie Kennedy
Stephanie lives in Fayetteville, NC and is the mother of 3 always hyperactive and occasionally adorable children. She was diagnosed with Systemic Lupus Erythematosus in 2001 and in the time since has added Scleroderma, Hashimotos, Celiac and Degenerative Disc Disease. In her day-to-day life she is a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla. She can always be found somewhere in social media-land causing some sort of trouble. Find her on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.
©2010 butyoudontlooksick.com"
 
 
 
Please post what you do to keep pessimistic thoughts away and being in those positive thoughts.

Friday, June 10, 2011

New Pain

I have had a return of panic attacks in areas that I had control of them before.  When I suffer a panic attack I can pretty much guarantee it being followed by a Fibromyalgia Flare.  This we I have had 2 major panic attacks and a lot of anxiety and it has cause a pain I have not felt before.

This new pain is the top of my head.  It hurts to touch.  I can barely brush my hair, a ponytail hurts.  Only way I can remotely explain the pain is it feels like a severe sunburn.  Since here in Michigan we have not had much sun and the few days we did it was dangerously hot outside, so I have not been out so I know it is not a sun burn.

I have always love my boys playing with my hair.  Jacob and Caleb have always liked to which with them being boy, boys I find it hard to believe they like to to that.  Right now I can't let them.  It just hurts too much.  I am sad about it as it is a specially bonding feeling.

As long as I have had Fibromyalgia, Anxiety, and Depression I have never had this pain before.  I am pretty sure the attacks is causing the pain on my head since my neck, shoulders, and other normal spots hurt.  I think I will have to check out some boards and see if anyone else has experienced this.  If you have please post.  I am very curious about this new pain. 

Hoping for it to feel better soon so I can do my hair when I go  out and my boys and I can have our special time together.

Tuesday, May 31, 2011

The Spoon Theory written by Christine Miserandino

The story below is great for anyone to use with any type of chronic illness or condition that prevents them from living their life like others around them.  I don't normally cry when I read things or watch things, but this brought tears to my eyes.  It is about a person with Lupus, but it is so much and close to what we go through with Fibromyalgia.  I also see it relating to my depression and anxiety as well.  Please read, and take the idea to show others how we struggle daily whether a good or bad day.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

Monday, May 2, 2011

Fibromyalgia Awareness Day


Fibromyalgia Awareness Day
May 12, 2011
Objective:
National Fibromyalgia Awareness Day aims to increase awareness of FM and provide support to those coping with the illness.
May 12 is National Fibromyalgia Awareness Day, a time to increase awareness of this chronic and life-altering disorder by educating the general public, healthcare professionals, government officials, and legislative bodies.

About Fibromyalgia: Fibromyalgia syndrome affects the muscles and soft tissue. Fibromyalgia symptoms include chronic pain in the muscles, fatigue, sleep problems, and painful tender points or trigger points at certain parts of the body. Fibromyalgia pain and other symptoms can be sometimes be relieved or eased through medications, lifestyle changes, stress management, and other fibromyalgia treatment.

Source:  Bloggers Unite

Sunday, May 1, 2011

An Easter We Will Remember-Roll Over Crash

Unfortunately, we learned how blessed we are on Easter through a roll over accident.  It was a freak accident.  We ran to Menard's to replace some piping to the sewer to the master bathroom.  After we left we went through McDonald's drive thru.  We had not eaten and were going to Meijer to get Easter dinner since we had made no plans and had nothing at home.

As we were getting on to the highway on US127 in Michigan Center towards Jackson, MI my husband Ed took a bite of a french fry.  He coughed which make the fry go down the wrong pipe.  He was choking, turned blue and passed out almost immediately.  Meantime I am screaming "are you OK" and trying to reach the steering wheel with no luck.  We were off the Highway, hitting a sign and rolling all in the blink of an eye.

Once we stopped I made sure Ed was breathing, which thank goodness he was, but saw blood running down his head.  I quickly checked on all 3 boys.  They seemed fine though scared.  I am trying to keep it together not to scare the boys more.  I start searching for my phone to call 911. 

Immediately some very great people stopped and let us know they called for help and were checking to see what kind of help we need and they were great at keeping me calm.  First responders were there in a few minutes.  Much quicker then I would have thought, though I had no concept of time.  All I can say is thank you to them and I know that is not enough.

The EMS started assessing the situation and us.  My concern was Ed until they were going over things about the boys and I noticed Jacob, our middle son, lips were blue.  They got the 3 boys out immediately and put them in an ambulance and took them to Allegiance Hospital in Jackson.  I was panicked a bit as I was away from my babies, my husband was hurt, and I at this point still had not thought of myself.

Jaws of life needed to be used to get hubby out.  They got him on oxygen right away and were most concerned with him as he had the most severe injuries.  He hit his head and shoulder and had glass in his hand and face.  Once they got him out I managed to crawl over to the drivers side and get out.

The ambulance ride felt long for how far we had to go as Ed was in the back hurt, I did not know the condition of the boys especially for Jacob.  I refused triage until I could be with the boys and make sure they were OK physically and emotionally.  As I walked into the room Nicholas and Caleb were sitting in chairs but they had Jacob on a backboard, which made me really worried.  He thankfully was OK and they were just taking precautions.  They said he was probably a bit in shock and had a possible class 1 concussion, though not physical signs of him hitting his head.

Things finally calmed down.  Our parents started to show up at the hospital.  I needed my mom and dad so bad.  I was finally triage.  They ultrasounded my abdomen as I have a huge bruise and abrasions from the seat belt and they too and xray of my neck as a precaution as it is hurting but with Fibromyalgia I would be hurting no doubt.  I was clear of and major injuries.

Eventually the boys and I were released.  Now I can go check on Ed.  Praying he was fine, which he was.  They did a CAT scan of his head, and they were waiting to take him to xray.  All came back OK and clear.  Major relief for us all.  They went over directions and released him as well. 

We all went home and went to our bedroom and layed down together.  We all counted our blessings and held each other a bit closer.  Friends brought us dinner, the next night another friend came out and made dinner and tried to help Ed with the sewer pipe.  Yes we are blessed with the best family and friends.

A week later we are start to heal at least physically.  I am having trouble getting back to normal.  My lower back and bruised stomach are still hurting quite a bit, but with Fibro I know healing is slower from things I have read and personal experiences like when I had gallbladder surgery. 

I have to give Nicholas, our oldest a lot of credit.  I complain a lot about his attitude and not doing what he should, but this week he really stepped up and helped us as much as possible for a 12 year old boy.  I feel guilty he had to help so much, but we are trying to reward him and hope this helps all around.

I am ready to get back to life, but my body is not.  Tried to do some laundry and it really flared me up around my injuries.  So a few more days of taking it easy and praying to God to thank him for keeping our family safe in his hands.  We were very lucky and I am trying to remember that everyday.  Bumps and bruises will heal, and we still have everyone so nothing could be better.

Below is an article from Channel 6 New out of Lansing, MI.  Should be 3 kids not 2.  Also a few pictures of the truck after the accident.

Truck Flips on Highway

Posted: Apr 25, 2011 10:37 AM EDT
It was a scary morning on the road for one family Sunday as a man driving started to choke, veered off the road and flipped the family's truck over. It happened on northbound 127 between Page Road and East Michigan Avenue. Police say they had to pry open smashed doors to get the driver and his wife out. They were taken to a hospital and treated for minor injuries. Police say two kids sitting in the backseat had their seatbelts on and were not hurt.