Just Pain a 9 out of 10

It has been a really rough week.  I finally thought the new medicine was helping.  I was not getting sick, I could stand on my own, without feeling like a weeble wobble, and I could actually get in the car and ride without having to pull over every 10 minutes or hold a bag or bucket in front of me because of motion sickness.  Well, apparently, it is not doing enough.  The first 3 or 4 days, it made me incredibly sleepy.  This, for me, was a major  plus.  Since I was a severe insomniac and was barely sleeping, the extra sleep was a blessing.  The only problem, it was lingering.  I was dragging all day.  I slept for numerous hours, but did not get restorative rest,  then all day, I felt sleepy.  So now it has been 10 days, still sleepy all the time, but the actual sleep assistance is gone.  I just feel groggy all the time.  I also have major pain.  As anyone with fibromyalgia knows, you can have pain in varying degrees, in varying areas, t varying times, at any given moment.  Well, let me tell you, the pain I have felt over the last 4 or 5 days would put a normal person in the fetal position, screaming for death.  My arms are constantly on fire, and at times I have pins and needles in them and then occasionally it feels like someone is stabbing me in the hand and forearm.  My hips are in so achy, and sore I look like someone with a double hip replacement when I try and walk.  My calves and ankles are like my arms.  Only difference is the stabbing in my legs is more profound, almost non stop and at night, it is horrible.  I am having a difficult time being mobile and have been in my bed or bedroom almost all week.  Over doing things, does wear you out.  When you have decent meds, you won't end up in bed for weeks.  But when the meds help put you in bed, it totally sucks.  When you go to the doctors, and they ask you, on a scale of 1-10 what is your pain level, how do you answer?  In all honesty, my pain level for a normal person would be a 100.  For me this week it is definitely pushing a 9.  My doctor said she sees a 10 as being in so much pain you are crying and curled up, well honestly if I cry and curl up, it just makes my pain worse, adds a bigger headache and curling up for me, well sometimes that is totally not an option.  So, I am trying my best to keep going, but seriously, how much pain can one person handle?  I can not take any pain meds, I have a horrible allergic reaction to them.  So, I will be talking to the doctor on Tuesday, there has got to be a medicine out there to help lower the pain levels.  I don't think a 9 out of 10 is fair to any living creature.  I would be happy with a 5.  I know they can't fix it, but what is out there to help?

How are your pain levels?
What meds do you take?
What alternative medicine practices help you?

Hope this helps you Relax!

It has been a couple of days since I have been on here.  I am in the process of changing meds, AGAIN.  So far so good, more on that later, but in the meantime have been not feeling great.  On top of it, I have company and am really pushing myself.  Pain levels are through the roof, but I am trying to just have fun.  Saw this sunset while I was crabbing tonight, first time I have ever been crabbing.  I love it, relaxing, and fun to just sit there and do nothing.  I will be doing it again.  But here is what I saw, have a good night!

Just simply waiting..... and waiting......and waiting......

If we are not all to aware of constant waiting.  Go to the doctors for an appointment and sit in a chair, an uncomfortable one at that, and wait.  Of course way past the time we should because I don't know many doctors that run on time.  We go to the pharmacy to get medicine and hope they are done, after waiting in line to pick them up, is it ready, if not we have to wait.  We call the doctor to tell them the new medicine is not working, the old medicine has stopped working, the pain levels are higher than usual and we wait for the phone call back. We take the pain medicine and wait for it to work, we go to bed and wait for sleep to come and the important of them all we are all just waiting, and of course praying, hoping and dreaming, of a cure.  

My wait today is a combination of many of them.  I had to call the neurologist today, again reporting the attempt at removing from the nortriptylin and not replacing it with anything is yet another failure.  I am no longer constantly feeling as though my head is swimming and every time I stand up I will pass out, but, my migraines and hemicrania continua that has been under much better control, has become horrific again.  I am not sure how  many of you have migraines.  I have suffered from them since I was eight.  Then about 10 years ago I started with a constant headache and nothing that ever helped my migraines took it away.  It took almost 4 years to diagnose because it is a rare condition, but then on top of migraines, they discovered I suffer from hemicrania continua.  This is the definition 

Hemicrania continua is a chronic form of headache marked by continuous pain that varies in severity and always occurs on the same side of the face and head.  Superimposed on the continuous but fluctuating pain are occasional attacks of more severe pain.  The headache may last from minutes to days.  Symptoms fall into two main categories: autonomic, including runny nose, tearing, eye redness, eye discomfort, sweating, and swollen and drooping eyelids; and migraine-like, including nausea, vomiting, and sensitivity to light and sound. Most patients experience attacks of increased pain three to five times per 24-hour cycle. This disorder is more common in women than in men. Physical exertion and alcohol use may increase the severity of headache pain in some patients. The cause of this disorder is unknown.

There is two forms- chronic, with daily headaches or remitting, which means you will have it for 6 months or so it will go into remission and then occur again.  I of course have the chronic one, no break for me, lol.

So now, on top of the normal headaches and migraines, I have this to contend with.  I take a medicine called Indocin, which has made a huge impact on the pain, and helped regulate it.  It states in all the things you read that it is a great drug and usually provides total relief of all symptoms.  Well guess what, I am one of the not so  usual,  is that much of a surprise to anyone out there, ya me either.  I won't say it does not help, it actually holds it at a bearable stage most times, but I think also having other meds involved has helped alot.  Now they have taken me off of Cymbalta, because it is not a drug my isurance covers under it's formulary and I have to try all these older type meds before they will and I can not afford the cost out of pocket and my husband and I make just enough that we don't qualify for any assistance.  I have tried nortriptyline which screwed with my blood sugar, made me constantly dizzy and nauseated, even more than normal, car sick and unable to drive, so that when out the window.  So, now I have to try more in the list of TCA (tricyclic antidepressants) before my insurance will cover the one medicine that was working, the Cymbalta.  So it is just a constant waiting game, waiting for the doctor to call back, waiting to see what med it is this week, waiting to see if it works, and all because someone sitting in an office is better at telling me how I feel then just being willing to pay for a medicine that works.    Well, I guess such is life.  The funny thing is, the Cymbalta helped with my depression, the headaches, the fibro pain, all of it.  I do not have the ability to take narcotic medicines.  I have a crazy reaction to every one I have tried, so pain levels for me are always crazy.  Cymbalta helped with all of that.  They had to keep increasing my dose every 6 to 8 months as I adjusted to it, but that is with every medicine and I had only been on it a little over 16 months when my insurance changed and threw me into this mess.  So I guess I will just wait some more.  I have to thank God some days for being a semi patient person, because If I was not, things would drive me insane.  I will let you know what new and exciting adventure I embark on as soon as I find out.  Until then, have a good night.  

Ten on Tuesday!!!! 7-5-2011

Ok, I am running just a few minutes late on getting this on the page, but I am still going to do it.  I am still having a bit of a crazy time with all the medicine changes and the headaches/migraines have been out of control since the doctor has decided to now take away the new medicine and not replace it.  So let me tell you it has been quite a crazy couple of weeks.  Throw in there, the July 4th holiday and visitors at my house from out of town for the last 13 days straight, I am totally wiped out and in need of a massive break.  Don't get me wrong, I loved having friends here, and can't wait til more get here, but we all know, with the exhaustion and pain, you wear out easy and extra people, simply means extra exhaustion.  So today, I have decided to try and make it simple.  I am going to simply show you 10 pictures of my favorite people, that have visited me so far this year!!!

1. My GRANDSON , oh yeah and my son

2. My nieces and nephew

3. My Cousin and her family

this is an older picture, not while they were at my house, but they were not all down at the same time, so I wanted a group picture of them, lol.

4.  My son Donovan's friends Jesse and Christian, both are just like another one of my kids!

5. Will and Mandy, Shaun and Helena  

   my adopted kids.....

6. Ronnie and Damien Finch 

friends of my boys from way back!

7.  Denise Zimmerman and Friends ( Denise is coming down with her kids in less than a week, I can't wait)

8. My Parents!  Ok now this is scary, but this picture is of my parents at my wedding almost 16 years ago.  It is the only one I have.  They hate having their picture taken, lol.

9.  My brother-in-law, his girlfriend and my niece and nephew.  

10. Dan and his family.  I have known Dan since 4th grade.  Pretty funny huh!

Well, that is the top 10, or first 10 visitors to my new house here at the Beach.  I am excited about having more visitors.    The summer is getting booked.  It is nice to be able to have people come down and for the most part, they are awesome about my ability or inability to do things.  I simply tell them use what ever you want and clean up after yourself, lol.  It is cheaper for them, and I get to see people I miss very much!

  

Just a side note, friends still to come!!!

Holly and family.....I started working with Holly at the 911 center about 10 years ago.  I was talking about my husband's sick uncle one day and she overheard.  His nickname was Uncle Fuzz.  She found it quite strange because her half brothers and sisters had a sick uncle as well, they called him Uncle Fuzz.  Turns out, her half siblings were my husbands cousins,  very small world!!!!  Now we are the best friends, and well in a strange sort of way, family!!!

Linda and family,  Linda was my best friend in kindergarten and all through elementary school and on through school.  She lived right around the corner from me, up until she got married.  So let me see, friends for 35 years  in September.  Pretty Darn amazing.

Well, I am sure there will be more, but for now, this is the list.  Christian will be coming back, as well as my son and grandson.  Will, Mandy, Shaun and Helena also want to come again, hopefully Helena will know then if the baby she is carrying will be a boy or a girl, then I can go shopping!  I know my cousin will be back and hope my mom and dad get down.  Well, such is life at a beach house I guess.  It sure could be a whole lot worse.  I try and remember that when my pain levels are high and I hurt a whole lot.  I just try and remember, it is good that I am in pain, I know I am alive!!!  Gentle hugs to all.  

Ten on Tuesday!!!!! 6-28-2011

Ok, so I really wanted to get some cool Red, White and Blue recipes together for my ten on Tuesday since July 4th is quickly approaching but today is not a great day for me.  Headaches are bad and just not feeling that great.  Instead I am going to do a quick list of my favorite books to read or make that Authors.  I do a lot of reading so books become my get away.  I don't mean books about illnesses or the crap I go through every day, I have to deal with that, this is something I do to not think of that. Books I use to help me day dream or take my mind off of the pain and daily grind.

1. Nora Roberts
2. James Patterson
3. Stephenie Meyer
4. Catherine Coulter
5. Anne Rice
6. Richelle Mead
7. Dan Brown
8. Mary Higgins Clark
9. Sandra Brown
10.Katherine Stone

These are some of the authors I have read numberous books from.  Of course there are many others.  I am sorry for cutting it short, but hopefully in the next day or two I will get to add some fun recipes for July 4th.  I hope you have a good night.

I so need sleep!!!!

Just wanted to check in, and say a quick hi to everyone.  I will not be on here long.  I have now as of the start of this little note, been awake for 33 hours with no sleep.  Why you ask, well I am asking the same question.  I have absolutely no idea, but no matter how hard I have tried, I have not been able to to fall asleep.  I have now taken my meds again tonight in hopes that I can sleep.  I will be praying very hard, as I am sure my husband will be, since If I don't get some sleep soon, it will get scary, lol.  I am not a happy person on low sleep, nor is my body.  It is pretty much revolting against me, however, it is the one not co-operating, so I am thinking I have more to complain about, lol.  I have gotten my voice back for the most part since losing it last weekend for almost 4 days.  The other bit of good news is that I won the "Today's Best Award" for one of my creations in my Zazzle Store.  The link is at the bottom of the page if you want to see the item.  It was one of I believe 46 items chosen out of 1,000's created for this the day on Tuesday as innovative and different.  I was pretty excited.  Now, if I could just get people to buy some more stuff so it can help my family out a bit money wise.  At least it gives me something to do.    Well, I am going to try and sleep.  Hopefully I will not be back on here until tomorrow, but please feel free to leave me as many messages as you want!!!!

Instead of changing everything, see post above for Today's Best Award Item!

Ten on Tuesday!!!!

I am so not quietly going to steal this idea from a co-blogger friend of mine.  She did her top ten lists on Tuesdays for quite some time.  It has been a while since she has been blogging due to the crazy business of life, but since I tend to find my self with a bit more time on my hands due to my fibromyalgia, I figured I would try this.  Please add your favorites to the list or throw ideas for future "Ten on Tuesday" lists.


Today I am going to try and start with a rather easy one.

Top 10 Favorite Snacks

1. Ice Cream: yes, I am an addict and I will admit it. Just be careful and listen to your body.  Some degree of lactose intolerance is suffered by 70% of all adults world wide so there is it is not surprising that many fibro patients have trouble digesting dairy. Also, according to a study in 1998, blood samples were taken from 40 fibro patients and tested against substances found in various foods.  The blood of 25% of these patients demonstrated an immune response to cow dairy products. (www.4fibromyalgia.com/news12.html)
2. Pretzels: I love pretzels, they are a great quick snack when I really need them. It is even better now that there is so many whole grain options out there.  
3. Granola Bars: Do you need something sweet, craving chocolate?  These little dandy's can do the trick.  Whole grain, low sugar, low fat and can help with the cravings.  It is awesome the options they have now and are making more with fruit and dark chocolate. Give them a try.  
4. Peaches: I don't care how I get them, I just want them.  Fresh are of course my absolute favorite but I also always have canned ones in my pantry and also now have found that frozen ones are awesome too.  PS, mix some with your ice cream in a blender and have an awesome milkshake!  Just be careful when purchasing canned peaches, the best would most likely be canned in their own or natural pear juice with no added sugar.
5. Tuna Fish:  I love to have this when I can.  I honestly would like to have it more, but with making it with mayonnaise it is not the healthiest so I don't eat it to often.  However, tuna is a good source of omega 3 fatty acid which we all need more of.  One thing I do do when I eat this, I put it in a lettuce leaf instead of on bread, sorta make it into a lettuce cup or wrap and it is a bit healthier.  I also chop up celery, carrot, and green or red peppers and add them to the tuna.  It adds some flavor and gives you and added boost of vegetables.  
6. Watermelon: Thank goodness it is summer and of course, I can only have this on my list over the summer, but what can be better for you, than some red, ripe, sweet watermelon on a hot summer night.  Well, pretty much nothing.  Something else you can do is blend the fruit in a blender and put it through a strainer.  You now have an amazingly refreshing drink. 
7. Pickles: I love pickles, all kinds of pickles.  My all time favorite is Claussen pickles.  They just hit the spot, especially when you are craving salt and the best thing is, they are good for you, or at least are a whole lot better than grabbing a bag of potato chips.
8. String Cheese: a fun little treat I always have in my house.  Again, it is important to watch how much you eat of dairy products, like noted in my first snack choice, but cheese also has some protein in it and does help fill you up.
9. Wheat Thins: whole grain, a bit salty and nutty flavor make these and awesome snack.  Eat them along with string cheese from #8 or even the tuna fish from #5 and you can actually have a decent light meal.
   
10. Peanut Butter Cups: this snack is a have one in a while treat.  I would love to say, like I am sure many of you, that I can eat these all the time, but the truth is, I can not.  Many fibro patients suffer from migraines and chocolate is a major trigger for headaches.  It is important to be very moderate about this.  One good thing is that they do now make these with dark chocolate which is to be more heart healthy.  So give you heart a treat once in a blue moon.

Remember, this whole chronic illness thing really sucks and is hard to deal with.  Finding snacks that help you stay charged and keep you moving is important.  Even more so, learn to listen to your body.  Take cues from how you feel after you eat.  If is seems you start to not feel good, or pain increases, isolate each item you ate and remove it from your diet for a couple of weeks and see if makes a change in how you feel.   I really hope to hear what your favorite snacks are, and any ideas you have for upcoming Ten on Tuesday ideas.  Thanks for reading and adding to this.  The more we share, the more we learn : )

to Speak or not to Speak

Ok, so I had company at my house for the weekend.  It was very nice all weekend to have my cousin, her husband and her daughter with us.  We wanted to take some time and go to the beach on Saturday, but the weather was not cooperating with us.  Every time we tried to leave for a little lounging on the beach and water  time for the kids (my son and my cousin's daughter who were both chomping at the bit to swim) it would get dark, and you would hear the rumble of thunder.  A burst of rain and it would be over.  We would give it a bit, start to head out, and hear comes the next scattered thunderstorm.  I felt like mother nature was watching me and every time I opened the front door of my house, she would cue the storm.  We finally gave up on the beach attempt and went to get dinner and walk the boardwalk.  It was warm and humid and wow did it drain me faster than a vampire drains a pint of blood.  I just kept moving, and drinking.  Had a great dinner and conversation, and we laughed hysterically on the car ride back to the house.  It had started to cool off so we then decided we would walk on the beach close to my house.  We walked for about 5 blocks on the beach and then back onto the boardwalk.  When I went to talk to my cousin again, nothing came out but a tiny little squeak.  Each word seemed to be swallowed in a black hole.  Ok, where the heck did this come from. Honestly, I was feeling tired, a bit achy around my hips and lower back from the walking around, but my throat did not hurt, and I did not feel sick.  So I was now stuck trying to figure stuff out, explain stuff and make arrangements and not being able to talk.  Fast forward to right now, 32 hours later, and I still can not talk.  Occasionally when I try, I will squeak, or part of the word will come out, but that is it.  I still do not feel sick.  My throat does not hurt, I have no cough, no cold and worst of all no voice.  So even when I speak, I am not speaking.  I know my husband and son are not complaining much, if anything, they are probably enjoying it quite a bit.  The question is, do I worry about this?  Is it just a fluke and will my voice reappear just like it disappeared?  Do I actually have pain that I don't notice because I am immune to pain unless it is extreme and the little bit of pain that it is causing just does not affect me?  I worry that if I don't go to the doctors and something is wrong, it could get worse and cause something more severe or maybe put me info a major flare and out of commission for a while, but then I also go to the doctor enough and hate to go if I really don't have to.  Then of course, will it mean another medicine if I do go to the doctors?  You never realize how much something this small can affect you, what craziness it can throw at you, when you deal daily with a chronic illness.  If you were healthy, this would be nothing, but for someone that deals with what we do, it can just horribly throw a wrench into things.  Then there is the issue of will the antibiotic,if needed, cause issues with the current medications.  UUUUGGGGHHHH!!!!!  This totally drives me nuts.  I would love for things to just be easy again, but I don't see that happening again for quite some time.  For now, I will just hope when I wake up tomorrow I have a voice.  Til then I guess the answer to the question is not to speak.

Figure it out?

I am at the point of complete confusion.  I think I finally have things figured out, start to get my finances in order, the I realize, I forgot something.  Ok, I have to tell you, the absolute worst part of this whole Fibromyalgia thing is the fibro-fog.  The fact that my once agile brain, is slow and muddled, even forgetful.  I was a person who was capable of doing multiple things at once, and actually doing them right.  I was a police,fire and EMS dispatcher.  I had to be able to talk on the phone, listen to the phone, type, talk and answer my radio and listen to my fellow dispatchers as well as complete tasks all at once.  Now, if I am doing something on the computer, I don't really do well if someone talks to me, and mostly miss the conversation or question they ask.  I can not talk on the phone and be on the computer at the same time and be as complete as I used to.  I just recently almost sent us into a major overdraft situation with our bank because I totally forgot the one bill we have auto deducted from our account.  The one that has been deducted the same time each month for the last 8 months.  How did I forget that?  Well I guess it would be the same way as I forget simple words I need to finish a sentence, a doctors appointment that I remind my son of just 4 hours and then totally forget and have to rush around to get to,    and even recipes that I have used for years.  Thank goodness my husband remembered and my family was able to cover me so I was not owing the bank my life savings and my first born in fees.  We all know how much this "disease" sucks, but losing your mind makes this even worse.  I am a person that has always been on top of everything, now I barely can remember my name, or at least that is how I feel.  Does anyone else feel that way?  How do you figure it out?  I will tell you what I have started doing.  I am the queen of notes.  It may be annoying, but learn to keep paper and pen or pencil with you at all times.  A calender will become your best friend as will the calender on your cell phone.  I love my phone, it beeps to remind me of every crazy appointment I or anyone in my family has, as well as any other important thing such as birthday's.  I also use my google calender to put appointments in so that it actually sends me an email to remind me of something that is going on.   I am thankful for my calenders and notebook.  I also have a thing through my bank that sends me notices about 1 week in advance when my bills need paid, I did not have my auto deducted bill on there, but I do now.   I truly believe I am quite a burden on my poor husband.  He works a full time job as a manager for a convenience store, so he basically works 24/7  then he deals with me and all my crap, helps do anything and everything when I am not able to, and now he even has to deal with covering my screw ups because my brain stops working.  If I can try and keep things on track by making a thousand notes then I will continue to do it.  If I get carpal tunnel from the notes, oh well, what is a little more pain, lol.    Can I figure it out and make it work, I sure hope so.  Will I give up, no way in hell.  I will not let this win.  I may have to stop in the middle of a conversation and  think of a word or make a hand gesture to help me finish a sentence.  I  may have to walk with a cane, sit in a wheel chair or not go somewhere, to be able to do something else.  I may not be able to multi-task like I used to and yes, my memory is definitely not as good as it was, but I will not give up living within my ability and pushing myself on occasion, to have a good and fulfilling life.  If I figure it out, I will tell you and ask for you to tell me and others if you figure it out!

A Beautiful Day

First, I must apologize for not being here in quite some time.  I have been extremely tired and just could not muster even the amount of energy needed to type a sentence, let alone some info for my blog.  With that being said, I have to tell you today was an amazing day for me.  I felt almost like my old self, almost.  The weather was beautiful, sun was shining, an awesome breeze coming in off the ocean, everything was clear and the sky was just bright blue.   In the town I live in, today was the annual, Craft Show on the Boardwalk.  Talk about lucking out, they could not have physically created a better day for it.  You could stroll along the boardwalk, and the side streets where the stands were set up, with the breeze flowing around you, keeping you comfortable and letting you take your time to look at every creation you wanted to.  I, of course, did not purchase anything.  I tend to feel sometimes these type of shows are a bit above my price range, then they set the price just a bit higher because of course you are at the beach and everything is higher at the beach.  I do love looking though, taking in the ideas and trying to figure out if I would be able to make the items.  Some of the items I would love to have, and hope to see again at a craft show closer to Christmas, that way maybe I could justify spending the money for it, but probably not.
The other thing that was awesome about today is that I walked for quite sometime, at least two miles, then came home for a little rest and did the grocery shopping.  My husband and I also made dinner together and cleaned up the kitchen, put away clothes from the laundry he did today.  This is the most I have done all week.  It was so nice to go out and just have a good day.  No rushing, no stress, no worry, it was simply just a totally relaxed and amazing day.  Last weekend I had my mom, nieces and nephew here for the holiday and did way to much.  The added stress of making sure I did enough with them and kept them busy and having fun really wore me out and made the last week very challenging for me so to have an easy weekend will be awesome.  I am sore and hurting now, sitting down for more than a few minutes helped me tense up and now I am feeling the pain a bit.  I always hurt the most in my hips and lower back.  I am hoping since I did quite a bit today and was outside alot that I will be able to sleep well and tomorrow when I wake up I will feel good. I guess I will just have to wait and see.  All I know, is even if there is a bit more pain tomorrow, I am extremely thankful for all I got to do today.  I am thankful for having more energy today, for not having a bad flare day and for my husband understanding all I go through and taking his time today so I could enjoy and take in all the stuff I wanted to.  Maybe tomorrow, even if it is not a great day, I can still get to the beach and just sit there and soak up the sun and watch the world go by.  All I know is today was a beautiful day.

Motion Sickness

So for the first time, today as I was driving to get my stuff done, I had the worst case of car sickness.  I have never been one of those care people.  I don't mind being in a car, but I am not a person that likes having to drive an extended length and where I live now, nothing is close so I find myself having to do just that.  So as I drive today, a small wave of nausea hits me.  I am at this point only in my car for about 10 minutes.  I have nothing done yet, and my son is at school and I have to pick him up.  So like with everything else, I trudge on hoping it was just a freak incident and it will go away.  I get to the school and just try and relax.  I closed my eyes and waited for my son.  The moment I started to drive it started again.  I grabbed a piece of gum and prayed it would help.  Lets just say, prayer was probably the only thing that saved me today.  The nausea was so incredibly horrible, and the further i went, the worse it got.  I have to tell you I am not liking it at all.  I hope it is just my body adjusting to the new medicine and a passing side effect.  It takes 15 minutes to get to my son's school.  It takes 10 minutes to get to the grocery store.  It is at least 25 minutes to get to the closest Walmart/Kmart type store and about the same to the closest shopping area/mall.  I do not have an option other than online shopping and I don't see that as an choice to get everyday items.  I will be a total disaster if driving becomes extremely difficult for me, or makes me feel ill.  I am stuck in the house often enough, when I am able to, I do not want to have something like motion sickness holding me back.  I guess it could be worse.  I could have actually vomited and have to deal with that.  I had to get my meds and get my son to the doctors.  The reality is my husband has to work, no matter how bad I feel some days I still have to do stuff.  So here is hoping I don't have to deal with this on long term, but if for some  reason I do, I am going to be prepared and learn to deal with it, just like everything else.  Have a great day and I pray each day you have less pain.

"Always Get Back Up On The Horse" Author Unknown

I borrowed this from another blog I found, and believe it is completely accurate, take a moment to read it please.  Remember, I welcome all comments, questions and interactions, this is about learning and understanding!

Each day when we woke, we had the opportunity to chose how our day would go. We ate anything we wished. We took a shower without assistance and we could stay in that shower 'til the hot water ran cold. We are wives and Mothers who took care of our home, raised our children and loved our husbands. Some worked outside of our home. We attended our children's sporting events and extra curricular activities. We paid the household bills, put gas in the car, did the grocery shopping, took the kids to doctor appointments and picked up prescriptions. We sewed on buttons and hemmed skirts. Family gatherings were our responsibility to plan and carry out. Did the bird feeder need filling? The garbage and recycling need to be put out? Don't forget to mail those bills. Family and friends received cards to celebrate their birthday, anniversary, a new baby or a life. Family pets must be fed, a drive to the Vet or to pick up their food, to mention a few.

Then one day we wake up and can't finish our shower because of the fatigue. Maybe the sensation of the water hitting our bodies feels like a million needles stabbing into our skin. Climbing upstairs is difficult to accomplish. We must climb half way, rest, then continue on. For some, different foods cause our pain to increase. We are unable to be on our feet long enough to make our kids' school lunches let alone make their breakfast. The dirty clothes are piling up. You rise from your chair and fall to the floor because of muscle weakness. You are afraid to drive for multiple reasons...you can't remember how to get to a location that you have driven to many, many times before. You are worried that your body will betray you before you can deliver your child to their football or play practice. Holidays are extremely difficult. It takes longer to accomplish tasks.Anxiety kicks in and confusion becomes evident. Cognitive issues are apparent to not only you, but to everyone you are in contact. You always remembered to acknowledge the birthday of others. It's on your calendar but you don't notice it until the day of, leaving your cards to be received late. You can't walk as far as you once did, leaving hikes with your family out of the question or a fun day of shopping. Volleyball games are to physical. To have a friend visit over a cup of tea is strenuous. Writing cripples your hand.

We must "always get back up on the horse" and put our best efforts forward. If we sit in pity, we can't ride.