Ten on Tuesday!!!! 8-2-2011 Back to School

I am once again running to the end of the day.  It is 11:32 pm and I am honestly feeling like crap and have no idea what I want to do for my ten on Tuesday, but I hate not getting it done.  So as I sit here and type and ramble to try and figure out what to do, I ask myself what things can I write about?  What lists or what groupings of things will make sense?  Honestly, my brain is not functioning and my head is hurting so bad, I can't even begin to get my head around anything.   But it hits me.....  It is back to school time, and what makes this time of year so hard on people with chronic pain diseases, well let me tell you-----
1.  Clothes Shopping-  This is a disaster. I am not sure how it is for you, but I have a teenage boy, who hates to shop, especially with mom.  So the stress of fighting to get him out, then finding stuff he likes, I can afford, and then getting it, well lets just say, by the time I am done, I am beyond exhausted
2.  Sports-  Yes, it is that time again, the crazy school sports schedules.  Sports camp starts before school even begins.  Football camp starts at 7 am, and of course we have to provide our own transportation, and my husband of course has to be at work at 6 am.  Ya, so the insomnia that keeps me up til 4 or 5 am and then I have to be out by 6:20 or 6:30 to make sure my son arrives on time, then of course the pick up which I am still not sure what time that is.  Ya, this should be good.
3.  Money- Finding the money, money for the clothes shopping, the sports equipment, the physicals, the school supplies and god knows what ever else they decide we need to pay for now.  Working on a close budget, that is one of the hardest and most stressful things for me.  Added stress, added pain as we all know. Worse of all, It may come down to choosing between money for sports and money for my own meds, and of course the sports will be priority.  My kids will not go without!
4. The List-  We all know the list..... the list sent home from the school, if you are lucky, mailed prior to the beginning of school, but often sent home the first day of school, with all the supplies needed or requested by the teachers for the child or children to have for each class.  Always specific items and nothing else will do.  And of course then you have to hope and pray you get to it before the store is sold out.
5.The Routine-  Getting everyone back onto a regular schedule, and out of the relaxation of summer.  It will no longer be the days of when it happens it happens.  Bedtime is bedtime, dinnertime is dinnertime, homework must be done, showers need done, you must wake up with the alarm and catch the school bus or walk to school and be there on time.  Summer is when you can sleep til you wake, slowly fall asleep when you are tired, eat when it is done.  Those days will have to wait again until next year, rigid time constraints will take their place.  So now, when you feel like crap, you can't say, it can wait a few minutes, because it can not, there is a schedule that needs followed.
6. The Struggle-  The struggle to shove all the last minute fun stuff into the few fading weeks of summer.  The days at the park, pool or beach.  The last minute vacation to see family or friends.  The water park, the mini golf tournament you promised, the movies, or what ever fun family thing you always did that you have not yet completed for this summer.
7. The Closet- Yes, we all know it has to be done, and we all dread it.  But seriously, if you don't clean out the closet, you won't be able to put the new clothes in, nor will you know what you have that still fits.  The summer stuff that can still be worn.   Of course, this will be a battle, and entering a child's room, especially a teen's room, could be in it's own right dangerous to your health, (lol), but it should be done, it will save your sanity, and hopefully a few dollar in the end.
8. The Company- I have to say back to school it bittersweet for me.  I believe it is the same for many parents.  Being an at home mom, especially one with limited abilities due to chronic illness, having someone home with me all the time is pretty nice.  Yes, he is a 15 year old boy, he is often hiding in his teen cave aka bedroom, but if I need him or he is bored, we hang out.  We do stuff together when I can.  When he is back at school, I am all alone in my house.  If I am in a totally incapacitated state, which happens often, I am stuck in my room with no human contact and I know he won't be popping in.  I love that he is back with his friends, he is active again, but I will miss the company.
9. Early Mornings- I don't know about others, but I am horrible in the morning.  Since I sleep like crap most nights don't fall asleep until the wee early hours of the morning, waking up at them is horrendous.  Also, on the amount of meds I take, once I sleep, waking up, is horrible.  I feel really drugged and not safe waking up and dealing with mornings.  I hate that my son has to get up on his own and get ready, I know he is 15, I understand he is old enough and needs to be responsible, but he is my baby, and it eats at me.  How do mom's with little one's deal with this?
10. The Yes I will Syndrome-  and so it begins.  The torture of the fact that I love to help, even when my body says there is no way in hell that I can.  Yes I will help with the fundraiser, yes I will help at the football concession stand, yes I will make something for the bake sale.  See, I have never ever been able to say no.  I hate doing it.  I know, physically I can not do the stuff I say I will.  5 years ago, I could, of course I was slowing down even then.  10 years ago, I was running the PTO, the soccer club, a basketball mom, helping with multiple fire company fundraisers, and bake sales, and I was also on the March for Dimes Committee for the Walk for Babies for the city I lived in and handled the food at the end of the walk for multiple years for over 1000 walkers.  Can I do that now.  Only if I wanted to be in bed for weeks afterward.  See, I have to learn how to say no, but how.  I want to help, and I want to be able to do it in the capacity I used  to be able to.  But I can't .  The Yes Syndrome is the hardest for me.  I have to learn to tell them what I can do, within my limits.  It is the only way.
So the start of the school year, the end of summer is very hard on me, and I believe on all the other people with chronic pain, or chronic illness.  I find it very hard to deal with, since I am a fighter.  the only issue is I fought so long, that I am in severe pain all the time now.  I fought against the pain, pushed myself no matter what pain I had, that my body was shutting down to the point I would pass out. I had for so long pushed the pain away, or fought it, the pain was so bad, my body was doing what it had to did to kill the pain.  What it did was shut down and I would pass out.  Now, I am not passing out as much, but I am feeling the pain.  who knows.  All I know, is once we get through back to school, all we will have to worry about is that wonderful time of year , CHRISTMAS!!!!!  GOOD LUCK!

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?

New Meds again!!!

It has been almost one week since I started my amitriptyline, to replace the Cymbalta I had to relinquish since I could no longer afford to pay for it.  Still not sure how I feel on it.  I am trying to give it the "old college try".  I can tell you one thing I have noticed.  It sure does make me sleepy.  My severe insomnia has become less severe, but it lingers and makes me very sluggish all day.  So I guess it is a wash.  I am getting more sleep, but I am not waking up feeling any more rested, actually I am feeling more tired.  UUGGHH!
So here is the list of side effects for this particular medicine:

• nausea
• vomiting
• drowsiness
• weakness or tiredness
• nightmares
• headaches
• dry mouth
• constipation
• difficulty urinating
• blurred vision
• pain, burning, or tingling in the hands or feet
• changes in sex drive or ability
• excessive sweating
• changes in appetite or weight
• confusion
• unsteadiness.
  Does it make sense that I am taking this medicine to help with headaches and pain and it has a major side effect of headache.  I can never figure it out.  Then, it messes with my blood sugar, so not fun since I have been diet controlled for so long I don't test and so now when I feel "off" I can't test because I don't have the equipment.  So, I just keep pushing on and on.  Why on earth is there not a medicine that can just fix it, without causing more problems.  I mean for crying out loud, is taking some of the pain away worth getting so tired you can't enjoy it.  It is frustrating.  I try and keep thinking, maybe I need some time to get used to the medicine.  Maybe once my body adjust to it, I won't feel like a walking zombie, but then the question arises, how long do you wait to see if your body adjusts to the medicine?  I wondered aimlessly through the grocery store tonight, wobbling like someone that just had a dual hip replacement, so I could try and get a few items because my fridge and pantry were looking like a bachelors pad after a 3 week party binge.  I needed my husband to drive me, just did not feel comfortable enough to do it myself, but once there, I was so tired, it took every ounce of energy to get me through the store to get the groceries.  The worst of it all, I still have a pretty decent headache, it is not like it has made a huge dent in the pain.  I so want to be back to my old self.  I want a day without pain.  I want to wake up, not have to take a handful of meds to function, to be able to get in the car and do whatever I want for as long as I want, without any help.  I want to make dinner, and eat it, no matter what it is, and then run around with my family after dinner, doing, again, whatever I want. All in all, I will continue to fight to find the right medication.  I will try and continue to give it the "old college" try.  I try not to let it stick in my head that it won't work, or to let the side effects list blemish my opinion of the medicine.  The only major problem I have is I was taking Cymbalta, did not realize how well it was working until I could not afford it and now have to try all these other medicines.  Even though they had to increase my Cymbalta dosage, I did not feel like a zombie, I did not get dizzy, motion sick, it did not mess with my sugar levels, and I could go to the grocery store by myself, (well the last one, at least one at least occasionally).  All I know, is I have to try and keep my spirits up, continue to be a guinea pig and hope it all works out in the end..  For now, I keep working with the amitriptyline and hoping it is the one, or that I can rule it out sooner than later!  So for now, keep smiling and moving forward, nothing else you can do!!!  Gentle hugs to you all. 

4th of July Fun!

The holiday is fast approaching and you want to wow your guests or your hostess with something fun, good to eat and of course RED, WHITE,  and BLUE.    Well, here are some quick and actually very easy ideas to make fun desserts that will wow the masses and celebrate the fun of the holiday with colors galore.  The best thing about them, is they are mostly easy to make from all ready made items if you are to tired to make them yourself, just some minor assembly and they will think you are a miracle worker.  
The first one is one of my favorites and it is a TRIFLE........ which by definition is a A dessert typically consisting of plain or sponge cake soaked in sherry, rum, or brandy and topped with layers of jam or jelly, custard, and whipped cream.  We are going to make ours more family friendly and summery.  


You will need, 
1 angel food cake or pound cake ( I think angel food cake would be good since it is whiter)
3 cups of strawberries, sliced and sugared
3 cups of blueberries, sugared (you may have to smash them just a small bit to help get the juices and sugar to combine, you need them to form some juice)
2 small or one large container of Cool Whip or whipped topping of your choice


1. Cut angel cake into approximately 1 inch cubes.  Set aside.

2. Gather Trifle Dish or high sided, flat bottom glass bowl.  Should be see through to make sure you can see the color of the layers. 
3. Separate the cake into 4 piles.  Place the first pile of cake pieces on the bottom of the bowl evenly spaces.  
4. Place half of either the strawberries or blueberries on top of the cake pieces., also using half the juice to moisten the cake pieces.  Make sure you are layering it so that each distinct layer can be seen.  
5. Take 1/4 of the amount of whipped topping and spread evenly over the berries.
6. Place another layer of cake on top of whipped topping.
7. Place 1/2 of the opposite berry (if you used strawberries first, now use blueberries or vice versa).
8. Place another 1/4 of the amount of whipped topping and spread evenly on top of berries.
Repeat steps 4 through 8 again, ending with whipped topping.  
Garnish the top of the trifle with either whole blueberries and strawberries or make a stripes alternating red and blue using the berries.  You could also stick sparklers in the tops or put red and/or blue sugar sprinkles or jimmies on top.  Be creative, cut out stars using a piece of paper and shake jimmies over stencil.  Carefully remove stencil to reveal just stars on top of whipped topping.    
The picture above is an empty trifle bowl, the picture below is just for reference to see how the layers should seperate.  Remember yours will not look exactly the same.  You can make this with any type of fresh berries, or even peaches and nectarines  

i

Jello Cake


YOU WILL NEED
1 boxed cake mix 
   (ingredients to bake the cake)
1 3 oz pkg of Jello gelatin mix (berry blue or some sort of red)
1 cup boiling water
1/2 cup cold water
1 8 oz tub whipped topping like Cool Whip
1 can Cherry pie filling ,Strawberry pie Filling or Fresh Strawberries, or Blueberry pie filling, of course use the  opposite color pie filling or topping compared to the color gelatin you used


1. Bake a yellow or white cake in a 9 x 13 cake pan according to package directions just omitting the oil.  This will allow your cake to rise better.  (You do not have to add anything to the mix and you can do this anything you are baking a cake, makes it a tiny bit more healthy too).  
, 2.When it is done baking, remove from oven, let cool for 15 minutes.
3.With the handle end of a wooden spoon or large tined fork poke holes throughout the entire top of the cake about 1/4 to 1/2 inch apart. 


2. Stir gelatin mix into the boiling water until all the gelatin is completely dissolved (about two minutes). Stir in cold water.  Carefully and slowly pour the gelatin over the entire surface of the cake.  Place in the refrigerator for at least 3 hours, until gelatin has time to set.   


3. "Icing" the top of the cake with the whipped topping.  Spoon the pie filling over the top of the cool whip or serve it on the side of the cake.  


4.  Keep in the refrigerator until ready to serve.  Immediately refrigerate leftovers.


When cut your cake will look like the one in the picture  to the right.  The stripes may be a different color depending on the jello flavor used.


This is an amazing dessert that is incredibly versatile.  You can use almost any flavor of cake mix, mix and match with jello and make your own creation.  Try a french vanilla cake, with orange jello and french vanilla cool whip for an orange creamsicle  type cake.  Like black forest cake, use a chocolate cake, black cherry or cherry jello, cool whip and chocolate shavings on top, you can even add cherry pie filling.  Don't forget you can try things like lemon jello, or lime jello, and add a bit of tartness to the cake, very refreshing.    


RED, WHITE AND BLUEBERRY MUFFINS
So do you have company this weekend, here is a great breakfast or anytime treat that is in the spirit and thanks to Betty Crocker it is quick and easy to make!!!!


Here is what you need:
1   box Betty Crocker wild blueberry muffin mix
3/4 c milk
1/4 c vegetable oil
2 eggs
3/4 cup dried cranberries


1. Heat oven to 425 degrees.
2. Line 12 muffin tins with papers or grease only the bottom of the muffin cups
3. Drain muffins from the muffin mix rinse and set aside. In medium bowl, stir in muffin mix, milk, oil, eggs, and cranberries just until blended. Gently stir in blueberries. Divide batter among muffin cups, each should be about 3/4 full.
4. Bake 17 to 22 minutes or until golden brown and tops spring back lightly when touched.  Cool 3-4 minutes and then remove from pan.


Glaze   
1/3 cup powdered sugar
1 to 1 1/2 teaspoons milk.
1/8 teaspoon vanilla or orange extract.


Mix together 3 ingredients to form glaze, drizzle over muffins while they are still warm.  Let cool and serve.


This should get you started.  I will hopefully find a few more tomorrow.  Getting tired thank goodness.  Has been a long week with lots of medicine changes.  Just hoping to make it through the big weekend with a large family gathering at my house of 20 plus people.  I am excited to see some of them who I have not seen in almost 6 months, just a bad time for the doctor to decide to change my meds around.  Well, here is hoping it all goes well.  I hope you all have an amazing holiday weekend.  Take care of yourselves.  If you tire rest, if you hurt, don't push it.  Remember it is the time to relax, others can help and you also deserve a break.  Happy 4th of July.

I GIVE UP!!!!

I have given it the old college try, or at least what I would assume it is from all explanations I have heard.  The nortriptyline is just not working for me.  I did not want to think from the beginning this was a bad idea so I set out to give it my best.  I started taking it, but in the mean time I had to ween myself off of my cymbalta.  From the beginning I was having some strange side effects.  The first and worst of all I was getting motion sick.  I was having the worst time.   I never had a problem with driving or being in a car and within a couple of days to a week I had a horrible time with the motion sickness.  I could not drive even a couple blocks without feeling nauseated, dizzy, and a bit of blurred vision.  I had to travel up to my hometown, which is 3 hours away, for a funeral and was not sure how I would make it.  Thank goodness my husband drove and for the most point I kept my eyes closed or attempted to do anything to keep my mind of of the feeling that I was going to vomit.  I was never so happy to get out of the car when I got to the destination.  The ride home, was much worse.  I ended up in the back seat of my van, praying that I could keep dinner down.  I finally, for the first time in my entire life, fell asleep in the car.  I am not a car sleeper, I have to be in control and with that sleeping does not allow me to know where I am or what is going on so even as a small child, I never slept in the car.  This time however, I believe God took pity on me and just let me fall asleep.  I kept pushing through, believing that it was very possible that since I was taking the new medicine and still weening from the old one that my body just could not handle that much of the similar medicine and once I no longer was taking the old medicine, I would feel better.  Well, I was wrong.  The car sickness, motion sickness is still there, as strong as ever, and if I am tired, it is three times as bad.  Now lets add the new agitated state and short temper that has crept up.  We all know that we have good times and bad times.  Some times the frustration of constant pain can lead a person to be a bit short tempered or bitchy as my husband would call it.  I have to tell you, I can be quite the queen of bitchiness when I want to be.  With that said, not even really knowing it was happening, I was jumping at people, complaining about every little thing and just being down right impossible to deal with.  I was anxious, every little thing would set me off into tears and suicidal thoughts have occurred.  I am extremely thankful for my training from my job as a 911 operator and my ability to step back and take a look.  Nothing is ever bad enough for you to do that, but that does not mean with all that we go through daily and then you add all this on top of it, that you feel you just can't continue and maybe instead of dealing with this, just not dealing anymore would be easy.  Well, ya, easy, I guess, selfish, unfair, uncaring, are more like it.  If I get in that area, I can recall many people I helped through the other side of it.  The ones that had to deal with the aftermath of a loved one's suicide and I will tell you, I just won't ever do it to my family or friends.  So when I got to this point, I knew something was going on.  I have dealt with 14 suicides of friends in the last couple of years.  These people were not just acquaintances, I am talking I knew the whole family and they were part of my daily life.  The pain of that is deep and unrelenting.  You look at suicide in a whole new way when you have to deal with something like this.  On a side note,  If you ever get into that situation and don't know how to pull yourself out of it, pick up the phone,  dial 911, they will help and they will not judge you, or call the national suicide hotline at 1-800-273-TALK (8255).http://www.suicidepreventionlifeline.org/?gclid=CNGZtZK1xqkCFYtV7AodnjQokw  Both are available 24/7 and will be able to help you, get you in contact with the assistance you need, and let you talk until you feel safe to keep control.  Remember you are not alone.  We are all here, we each deal with things, some the same some different, but we want to support each other.  Let's do that.  Now, the final thing, I am getting dizzy while standing.  If you read the previous entry here on my blog, you will know that I went shopping  and during my trip, I had to sit down right in the middle of the store in the middle of the aisle and just stop.  I felt flush, my hands went ice cold and heavy, I started sweating and thought sit down or pass out.  I try and joke about it.  I said to a friend I would rather sit down and get a few strange looks, then pass out and wake up to a bunch of strangers looking.  But I can't not live like this.  I feel like this medicine has control of me and I don't have control with the medicine.  So tomorrow it is time for me to start this whole crazy mess over again.  I would love to go back on my cymbalta, maybe a higher dose, since for the most part I think it worked until I got used to it and then the dose was not enough.  The issue, it is not a covered formulary for my insurance company and I can not afford the $160 a month out of pocket for the med.  So we have to play the game with the insurance company and try all the meds they think should be better before they will approve to pay for the one we know does something.  It sucks that they have that control.  I think they should have to deal with what I do daily for a week or so, without the proper meds then tell me what is ok.  Maybe they would understand they really should just let us take the medicine that helps even if it costs extra.  I won't give up though.  Maybe another med will help.  I just pray that it won't cause any side effects, react with the whole pharmacy of other medications I already take, and that I can afford it, since we make just over the amount of money to get any sorta help from the pharmaceutical company's discount programs, or other programs, but our insurance is not great in any sense of the word and has a huge deductible that needs to be met before we even get any coverage.  I mean I am thankful I have insurance, I know people are worse off than me.  I guess sometimes I just simply wish for a break and that I could just be back to the old me.  But since that will not happen, guinea pig time here I come again.  WISH ME LUCK and I will keep you posted.

So as it stands

it is a no for NORTRIPTYLINE!!!!!!!