Where is the time going?

I was getting ready to go to bed after another whirl wind (ok, you know I am lying) weekend and I realize, it is actually Monday night.  I totally lost track of time.  I keep thinking that I am keep up with my blog and then I see it has been another 4 days since I made a post.  Right now, All I can ask is that you please keep checking back and please forgive me.  My pain levels are just out of control right now, and due to my inability to take pain meds, I am having a hard time getting the pain under control.  I am hoping it will get better soon, if we finally get the rain that they have been calling for for the last week or so.  It has been an incredibly long day so I am going to try and head to bed, and hope my body and brain decide to cooperate with me.  Ten on Tuesday tomorrow! Til then, Gentle Hugs.

Rain Dance!

I am in a severe struggle right now.  The struggle between trying to keep my sense of humor and curling in a ball and crying from the pain.  I just finished a run of steroids to help get the severe headaches I have been dealing with under control.  Well, it did not really work, I am still having the headache.  Now add in, some severe and overbearing pain in the rest of my body, and you will have how my week has been.  I feel like I have been neglecting almost everything.  But in all actuality, no matter what I do, it hurts.  Sitting, standing, laying, typing, watching tv, cooking, walking, all of it results in some sort of pain, or is painful in some way.  So I have avoided adding anything to my blog, typing is painful, but also the screen on the computer is to bright, adding to the headache.  Watching tv is ok for a few minutes but then it starts to hurt my eyes, then the volume begins to annoy me and all adds to the headache.  Both of these require you to either sit or lay.  I can do both for just  a few minutes before the pain, more like severe burning/stabbing pain begins in my hip area. I also have the same burning pain in my arms and legs all the time.  This pain I am feeling is normal for me, but nothing this severe.  I deal with all of this on a regular basis, to a lesser extent, but for some reason, either right now I am just much more susceptible to the pain, or it is just so much worse.  I do know, that when there is a change in the barometric pressure or weather patterns my pain gets 300 times worse.  The weathermen, which we all know we just can not trust, have  told us that it should storm or rain every day this week.  So far, no rain.  I am thinking maybe this is the reason why my pain levels are so out of whack.  The only problem I see, is beyond the fact that it really needs to rain, it has been really nice outside.  Of course, I know you are asking, how would you know?  Well, it would be from my wonderful family telling me how nice it is outside, while I am barely able to walk my butt to the bathroom!  Sometimes they don't really think.  So it is so awesome that is is beautiful out, and it would be awesome time to be over at the beach, not to hot, but no, I am stuck, getting my suntan from the inside since I am on fire from inside.  I think mother nature is now screwing with me.  Is it because I asked her to cool it down a bit and it is summer when it is supposed to be hot, or is it just my imagination?   I am at the point where cutting off all my appendages including my head, would possibly lower my pain levels, but so would, hopefully an amazingly strong thunderstorm.  Which would be easier, and probably a bit cleaner for me, the thunderstorm.  So the only question left is who is available to perform the Rain Dance, because I am not sure I can do it myself, but I would be happy to give it a try.  I am sure someone would at least get a good laugh out of it in the end!

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!

Can't Sleep Again!

So it is 1:39 am on Thursday morning an I am still awake.  My forearms are on fire.  My hands are all cramped up and no, typing is probably not a smart idea.  My legs are achy and also burning.  I have this weird pain near my right should blade, almost feels like someone is grabbing and holding onto it for dear life.  Now, the headache.  I think for some reason I have upset the little people that live in my head and they are having a party with jack hammers and drums.  I am not sure what will make them happy again, if any one has any suggestions, I will try just about anything.  So once again, the guinea pig medicine test is starting.  The doctors feel I have tried enough  of the tricyclic antidepressants that my doctor feels my insurance should be ok with me going back on the cymbalta.  This means that  they should help pay for it rather than it being out of pocket.  Only problem is that I know have to wait and see if they will, or if they will decided to make this old dog jump through more new hoops.  Until then, they put me on steroids to see if they can get the recent attack of severe headaches under control.  I am also hoping if that happens, some of the other pain starts to get under control as well.  It has not helped that is has been a long week with week too.  Sunday was the Ken Neidinger Memorial Motorcycle Ride.  This was put together to raise money to help deter the cost of Ken's funeral and to start a college fund/grant for the police academy.  Ken, a police officer, an Iraq war vet and a friend of mine, died from a massive heart attack at the age of 37.  A total shock to all of us.  Ken only passed away in March.  Then yesterday was the one year anniversary of the death. of a girl I knew, who felt more like a daughter to me.  She hung herself and even though we had no idea she was even in that frame of mind, we did know she was fighting some demons here.  It was quite devastating, and even though we did find a note eventually, and got a little bit of information about why, we will never have all the answers and since she was only 27, we will miss seeing her complete many milestones in her life.  She also left behind a little girl who is now 7, so it is very hard.  It has just been a rough week.  That stress, as you know, just adds to all the pain.  So I am hoping I get a good nights sleep, or I finally get some sleep.  I just keep trying to remember that I will eventually find medicine that works, I will get things under control and thank goodness I have a husband and son that are willing to help.  The stress right now of applying for Social Security Disability and all the other stuff, will pass.  God only gives you what you can handle.  That is what they keep telling me.  I just keep trying to remind myself.  Until the next time, Gentle hugs.

Ken's motorcycle and boots at the Ride

Ken's Bike, helmet and Boots.  Ken's Brother rode his Bike, but Ken's spirit was with all the riders.

Ten on Tuesday!!!! 7-26-2011

I AM HOT!!!  If you have not gotten that with the last post, I guess you have now, and I will say it again, I AM HOT!!!!.  The major issue is, most of the medicine I am on, has a small print disclaimer, avoid sun exposure or extended heat.  So my best friend is my air conditioner.  However, there are times when even that is not enough. What else is there to help you cool down, well of course, today is Ten on Tuesday and here are my top ten ways to help cool down on an extra hot day.

1.  Cool Shower--- remember, cool, not cold.   Shocking your body is going to do nothing for you other than make it work to get it back up to it's "normal" temperature, so it will end up making you hotter.
2.  Ice/cold compresses--- On the back of your neck or your forehead, especially if you tend to get headaches, it will help tremendously.
3.  Dip in the pool---  I used to be a fish to water.  I love to swim.  I would be in the water constantly if I could, however it incredibly wears me out, but man just sitting in the pool, in the shade or under and umbrella is awesome.
4.  A hammock under a tree---  Take a nap, read a book, or simply relax.  It is awesome.
5.  A snow cone--- brings back memories of going to a local open air market with my grandfather as a kid.  I always got blue raspberry, always made a mess, but it always helped me cool off.  I love it
6.  Ice cream---  who does not love ice cream, have it for dinner on a hot day.  The kids will think you lost your mind, but once in a while, it is ok, and you know what it is going to help cool everyone off and have fun!!!
7.  Run through a hose---  ok, you can walk, or crawl or what ever you need to get through it.  But remember as a kid how great it was to run through a hose shower, or get sprayed while mom or dad were washing the car. take a few minutes and throw yourself back in time, recruit your kids or friends and have a blast. Maybe even get your car washed in the process.
8.  Drink Cold Water--- I drink all the time, side effect of the diabetes.  However, when you are hot, drinking cold water will help cool you down.  Make sure you are drinking more than you normally do.  When it is hot, keeping yourself hydration is very important, might not keep you cool, but will keep you out of the hospital.
9.  Have a cold dinner---  When it is hot, I hate to eat hot food.  Here is a couple of ideas I use for dinner.  One, a salad, summer is awesome for this.  All the fresh veggies at less expensive prices a salad is quick, filling and good for you.  Another option, a salad plate.  Pick up a couple different salads at your local deli such as macaroni salad, potato salad, ham salad, egg salad, tuna salad, or you can make them yourself.  Place 3 lettuce leafs on a plate, use a ice cream scoop and place a scoop of 3 different salads on each lettuce leaf and slice some tomatoes and serve on the plate with crackers.
10.  Soak your feet in peppermint water.  Mint is cooling and soothing.  Your feet can really help regulate your body temperature.  Place cool water in a old dish pan or container big enough for your feet, add a few drops of peppermint oil and relax.

There are many people that would say there are other ways to cool down.  I can also think of many others, but since I am limited in my ability to do a lot of things that are taxing on the body, I have to do the easy stuff. Now if I was not dealing with the fibro and hemicrania continua I would definitely do some of the following:
1.  Waterpark
2.  Water Skiing
3   Swim in the Ocean
4.  Tubing
5.  Kayaking
I am sure I am missing some stuff, but you get the idea.
What do you do to stay cool?
What summer food brings back childhood memories?
Well, I hope you can find something to help cool you off.  Take it easy and take care of yourself.  Until the next time, Gentle hugs.

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. 

What a week!

So as you can see by looking at my posts, I have been neglecting my duties.  I have not been on my blog this past week hardly at all.  I missed my favorite day, Tuesday, thus missing my Ten on Tuesday entry, and only did a quick entry to let you all know I was still alive with pictures of what I was looking at while participating in a new adventure, crabbing, on Wednesday evening.  So here is all that has been occurring   If you are new to my blog, let me tell you quickly that I live in a summer resort town.  Awesome huh, yeah, most of the time.  Thus begins why this week started as a horrible week, got better and now, well I am just totally wiped out.  Many of my friends from my hometown, about 3 hours away, come down to my area for summer vacation.  For me, this is great.  If they don't stay in my actual home town, they usually stay in an area either 12 miles north or 12 miles south of me.  This week for some reason everyone seemed to be flocking for vacation at one time.  I was so excited.  Well then my bubble burst.  No one was returning my calls, my text messages, my facebook posts, anything.  I thought, what the heck did I do?  If you would know me, you would understand, I am the person that always worries about everyone, that always put forth the extra effort, that worked the hardest to make things work.  Now, I felt like since I was not around my hometown, still working my old job, since I got "sick", since I was not going out of my way to give, I was not good enough.  So now, boy was I mad!!!!   I decided I would just take a ride down to the area where everyone was staying and hope I would run into them.  Of course I did not, so now I was sad too.  Upon getting home, things got worse.  My so called best friend forever, just posted on facebook, that he was at the house of a person who in the past has immensely hurt me, caused major financial stress to my family, added stress to me personally, which we all know as a fibro patient I did not need, then tried to lie to mutual friends and make my husband and I look bad.  Thank goodness, my friends know me and knew she was lying, but still.  So now, I have had enough.  I post, on my facebook page that I have had enough, I have had it with fake friends, trying to keep friendships with people that don't have the time for me, that I will no longer be putting myself out on a limb if you can not meet me half way.  At this point, I am giving you a chance to remove yourself from my friends list and my life with no hard feelings, before I do it myself.  Well, of course, my so called BFF felt guilty and called me right away wondering if I was talking about him.  He proceeded to try and explain himself and then when he could not, he tried to twist things around and cause problems, bring up past issues that he thought would make me upset.  Guess what, it did not work.  But, it was still stressful.  So now, one of the most trusted person in my life, showed his true colors.  Down another so called friend.  Now, off goes a whole mess of  "friends" who can not make the 2 minutes for me, and honestly, I am fine with it.  It is the end of the week, and those friends that came down at the beginning of the week for vacation, yup, you guessed it, I still did not meet up with them.  So guess what, apparently they are not friends either.  The one good thing, one of my true friends did come down mid week, to stay at my house.  Her and her family have been at my house and having the time of their lives.  We have spent time together, they have done family things, we have laughed, talked, hung out and just had fun.  Only problem I have, is I have pushed myself to far, trying to keep up.  So now, I am totally wiped out, I have extremely high pain levels and feel like crap, but all in all it is so  worth it.  I did have another friend down I got to meet up with for a few minutes, which also was cool.  Another friend, and her family, are down and  we planned on meeting up. A family emergency interrupted those plans and things did work out.  This is something that does happen.  I am praying for her nephew and asking all that read this, do the same.  He is only 6, almost drown at the age of 1, and has been in a wheelchair and had a tracheotomy since then, had a cardiac arrest while with them only 10 miles from my house on vacation and flown back to my hometown, to the children's hospital.  He is still on life support and we are waiting to see if there is any further brain damage.  See, so we are not the only ones suffering and some are much worse off.  Something I try and remember every day.  So, wow, what a week is an understatement!
The thing I have to say is this, friendship is a two way street.  If your friend does not make the same effort to keep the friendship alive, is it really a friendship?  Do not waste your energy on people like this, or stress yourself out.  You need people that love you, and support you, the same way you do to them.  With the illness that we have, most people don't believe us, treat us different, or simply walk away.  You need to cherish the ones that are there for you, understand (or try to), believe in you, and treat you like they always did.  If they don't, it is time for you to walk away.  It is not easy, abut is anything we do?  Do you need any more stress?  Do you need a friend that only takes and does not give?    I know my life has changed.  I am no longer the constant giver, the over achiever, the perfectionist.  Is this something that is easy for me, hell no!!  Do I still push my self, of course I do! and I do it way more than I should and probably will til the day I die.  I will always be the "mother".  That is the job I believe I was programmed to be when I was born.  But I will tell you, I now have chosen that I will do that only for those who care enough to care back, and even though it hurts sometimes, I know I am right to do it and all it all, it is better for me.  I will always help people any way I can, but I won't hurt me in the process.

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.  

Fibromyalgia Waror Bag from Zazzle.com

Fibromyalgia Waror Bag from Zazzle.com cute new bag I made. Use it to carry all those important papers back and forth to all those doctors appointments we all know we love.....Not!

No Meds, REALLY!!!!!

I am telling you, I simply don't understand where the days have gone.  It may be that we have had company all week, or maybe I am in a fog from medicine changes again, or lack of sleep, or a combination of it all, but I feel like just it should still be Monday.  I also feel like I am neglecting my duties as entertainer of the year, or ok, entertainment for the extremely bored, by not getting as many posts put on my blog as I would like to.  Some days I have a whole lot of energy and a great idea on what to write, some days I have energy and wing something to write about, and somedays, I can't seem to remember where I put my brain, let alone an idea.
Well, I am still in the process of dealing with medicine changes.  Yes, the nortriptyline was a complete fail, I always felt like my head was floating in the clouds, while my stomach was getting air sick.  Sitting down was not usually an issue, well unless it was in a car or for that matter any other moving object, then, my body revolted.  Standing up from a sitting position was quite a different story, I then felt like I would quickly be returned to a laying position, usually against my will, at which time, I would immediately lean on someone or something in order to avoid having my body lay down the hard way.  So now, you say, what have they decided to use this wonderful, free (I actually end up paying them for the torture) lab test rat for?  Well, the divine, well educated, highly paid, pain free doctor decided lets just remove you from the medicine and not replace it with anything.  Just keep taking the others you have taken for a years or so and see if works on it's own.  Do you seriously think they would have added the pill before this one and then switched it to the nortriptyline, because of cost factor, if the medicines I was on before this one, were working just fine???  REALLY!!!!  So I have decided the only thing they are using me for right now is to see exactly what my pain threshold is before I want to physically harm them so they experience a glimpse of the pain I deal with everyday.   My pain threshold is very high, I lived with this pain for 10 + years before it pushed me to even complain enough to get it checked into. I have now been diagnosed and dealing with med changes for more than 5 more years.  I had two kids, been in an abusive relationship, choked til I was almost dead and pushed myself back to reality.  I can handle pain.  This is not pain, it is torture.  So now, I am trying to deal with it, and keep my spirits up, but seriously, I don't even think spirits, even mean ones, could deal with this much pain.  It hurts to type.  And all of this is occurring at the time of year summer goes into full swing.  July 4th is on Monday, (two days away), so many more people are around, I have a house full of visitors almost non stop for a couple of weeks, and life is already crazy enough.  Here is the deal, I have decided when the doctor asks me how the med changes are working on Wed July 6th, when I talk to her, I am going to  ask her if stubbing her bare toe on a concrete block would hurt or not?  Do you wonder what she will say?  Well, here is hoping they will realize pain is a relevant part of our lives and most of the time the pain I do my daily things with, would send a person to the hospital.  I just close my eyes and pray.  I am not mean, but serjously, it hurts, na d is crazy.  and if you don't understand, tie yourself to the back of a  car and ask them to drive around the city, in a pot-holed area for about an hour.  No slowingdown and no stopping.  I am pretty sure, when you they just done, they might just understand.  In the meantime, remember, anyone can be book smart and paid lots of money, the reality is, you know your body and your pain, If they don't kick them in the knee and when they are down, step on em, LOL!

Wow!!!!

So, I am in shock and overly excited and then I sure feel dumb and frustrated with myself.  All of this in the matter of about 5 minutes.  So are you wondering why yet?  Well, I was so excited and shocked to come on my blog after a week of craziness and not being able to get here to see so many awesome comments from people.  Then, I realize, I totally missed the awesome chance I had with #commenthour.  How the heck could I forget I signed up for that and had a chance to be featured?  Well, I know how I could forget, It is called fibro-fog.  It is when this awesome everyday unrelenting condition of fibromyalgia starts to effect your brain function.  The once normal person, the one that could answer the phone, listen to the radio, run something through a computer program and answer a coworker all at the same time while remembering everything she was supposed to be doing, can not remember what she had for breakfast 3 hours ago.  How was I supposed to remember that I signed up to be part of #commenthour when I did it 3 days before hand.  (I only know that because I looked it up, lol)  I have to tell you, the fibrofog is probably the worst thing for me.  I am a control freak.  I like things to be on time and in order.  I was always the one to handle the finances because I could tell you to the penny how much each bill was, the date it was due, which paycheck the money to pay it would come out of, and so on.  I had recipes memorized, I worked at a place where I had to memorize fire company unit designaters,  EMS designators, geography, ten codes, phonetic alphabet and operating proceduress.  Now, it have a hard time remembering when to take my medicine or that I have a doctors appointment.  It is a combination of things.  First of all in general, you become a bit fuzzy.  When you are in constant pain, it is hard to concentrate.  So it is just a basic thing that you don't always function mentally and cognitively as well as before.  Then, there are all the medicines.  Each one of the medicines I take for my fibromyalgia and co-morbid diseases, has a warning with it, either, causes drowsiness or dizziness.  Ok, so if you are totally doped up all the time, of course you are not going to function in the best capacity.  But if you have any idea of how the pain is, with the medicine, you may actually have a somewhat manageable pain level, without the medicine, you would be so out of your mind, you could not be able to assist in any fashion.   It is basically 6 of one and 1/2 dozen of the other.  High pain levels and incapacitated from the pain, or meds that help to regulate the pain, but make you tired or dizzy, or nauseated.  I will tell you, there are times when I have to not take doses of my medicines so I can function enough to get stuff done.  If we have an appointment during the day, morning medicines are out.  If I am going to be driving to dinner, early evening medicines are not taken.  Sometimes, you have to decide the pain is worth the outcome of what is going to happen.  So needless to say.  I am so thankful to #commenthour for featuring my blog.  I am also very happy that you so enjoyed the recipes and information that you read on my page.  I truly hope to be able to be at #commenthour this week.  I would love to chat with you and answer questions.  If anyone thinks about it, maybe you can do something for the forgetful old lady I have become and add a comment to my page to remind me.  Thank you all for reading my blog.  Thank you for your awesome comments.  Please check back, I will be adding my 10 on Tuesday shortly and I am hoping to figure out the subject tomorrow.  Again, Thank you very much.

Uh, oh, feeling dizzy!

I decided today that I wanted to go shopping.  Tired of being stuck in the house.  Thought I was feeling pretty good.  So I live near a huge outlet center that was having huge sales, a plus for me since money is always tight, so that is where I headed with my poor husband in tow.  Well, I should have know when I walked out the door and the heat and humidity hit me like a brick wall, this is so not a good idea, but I just pushed on.  The first store we went I did pretty good, got a few items for my grandson for an amazing price.  Then got in the car and headed to the other side of the outdoor outlet center.  Walking in and out of the stores, in and out of the air conditioning, my body did not seem to want to regulate it's own body temp.  By the third of fourth store my arms were numb and cold, my face bright red and it did not seem like I was sweating or whatever it needs to do to get my body to the right temp.  I get my husband to get the car, don't think I will make it from the store to the car, trying really hard to pretend everything is fine and keep going.  So I go to three more stores at the outlet mall and then head to the local Kmart.  I really need to find shorts for my teen son.  That is the hardest thing in the world to do.  So as I am looking through the shorts I become so dizzy, I have 2 options, pass our or sit down.  So right in the middle of the men's clothing department I sit down on the floor. At this point I have no idea what I am going to do.  My husband is not close by, I don't have my cell phone with me, and here I am on the floor, knowing that standing up is surely not an option.  So I just wait.  Finally my husband comes over and finds me, looks at me and says "what are you doing?".  Of course, I am trying my best to keep my sense of humor and tell him I am checking out what the shorts would like like from a kids point of view.  Sounded good to me, lol.  He helps me stand up and I think I am going to go down again.  I lay my head down in my hands on the cart for a good 2-3 minutes and then start walking.  I had found some shorts for my son, but so much for getting my husband something for Father's day, I had to get out of the store.  I decide I am going to look at nail polish quick.  I have been trying to take care of my nails and wanted to start painting them  I was thinking, I will just stand here and let my husband help pick a color out.  I bend over to look at a color and when I stand up all I remember is my husband grabbing me.  Yup, here we go again.  Well, we grabbed a color and then headed to check out.  We came straight home afterward, blowing the rest of the night.  I laid down and just watched TV and still feel shaky.   The only issue I am having right now is I am not sure if it is the heat and humidity, apparently is was at least 95 today with almost 100% humidity, or was it the new medicine my body is trying to get used to, and just does not seem to want to adjust to.  Was it a combination of both of them?  I guess we won't know, unless it happens again and I can rule one or the other out.   All I know is I hope when I wake up I am feeling better.  I would really like to be able to do something special for my husband for Father's Day, even if the only thing would be to take him out for a meal, or maybe go to the beach.  I am going to do some more research on Nortriptyline to see if I can find anything else out about it.  Maybe it will give me an idea why this happened.  If anyone else out there ever had anything like this happen, please let me know.  Maybe if it has happened to a group of people and we can figure out what was occurring before and during it, we can sorta understand why and maybe figure out how to make sure it does not happen again.   I hope daily for a cure.  I try and stay positive about the whole situation, but sometimes it is harder than it appears.  I truly believe people with chronic illness are some of the strongest people in the world, if they were not, they would never be able to handle the pain and crap we go through.  But I also sometimes ask, How much pain is to much and how much can one person take mentally, physically or emotionally before they crack, then add how it effects us in all three areas everyday and wonder why we are not lying on the floor in a heap all the time.  Please Let me know if have had any of this happen to you and what was going on when it happened.  Believe me when I say, I am blessed to know all of you and to be around such strong people.  You keep me moving forward.  As for now, I must sleep.  Good night, Gentle hugs.

Got Spoons? T-shirt from Zazzle.com

Got Spoons? T-shirt from Zazzle.com

Check out this and many other items just to the #spoonie in all of us!

Insomnia: Can't sleep? Try cooling your brain - latimes.com

Insomnia: Can't sleep? Try cooling your brain - latimes.com

Had to put this on here. Will be talking to my doctor about this. I am a severe Insomniac. I, for some crazy reason, can not sleep at night. I have tried a whole lot of things, with no success. I have no idea if it is purely from the fibro pain or the fact that I am still on the "nightshift" mentality that I have lived for over 15 years prior to not working. The bad thing is I do remember even when working nights, and being exhausted, I could not sleep and with 12 hour shifts, having to fight for sleep, was not good. Read the information, tell me what you think. I would also love to hear about anything that may have helped you get to sleep. Share with me your positives and maybe it will help someone else. Also thank you to Felicia Fibro for finding this info and sharing it first. Check out her site by clicking her button on the right side of my page. Remember, the more you find out, the more you are informed, the more you will be able to handle and deal with this mystery and invisible illness. Also, please if you like my blog, follow me. That way you won't miss any info posted and I always hope for comments, questions, stories and responses, interaction with others helps everyone!

HOT!

So it is only the beginning of June and we here in Delaware are in the beginning of our second supposed heat wave.  I am totally not cool with this, no pun intended.  I am sure you are all aware major weather changes wreck havoc on your pain levels and high heat kills me.  It wears me out so quickly, and no matter what I do, it makes recovery back to my more normal (if you can ever use that word to describe yourself,) self a long and drawn out process.  I sometimes wonder what is worse, the hot or the cold weather.  Well honestly, I have an answer.  I have to say the hot weather for me is absolutely the worst.  At least in cold weather you can continue to add on layers until you are warm, but when it is hot, being naked is as bare as you can get, and being in water to cool off helps, but only to an extent and then at some point that no longer helps.  Plus, I do think the town would very much frown at me slowly limping and waddling through completely naked dowsing myself with water stay cool.  It would definitely scare away our large summer vacationers that help keep our town running, plus it may get me in a bit of trouble and of course would definitely mean I would need a whole lot more pain meds to be unstable enough to go outside my house naked, LOL.  So what the heck do you do?  Well, first off, pray the air conditioning equipment in your home, whatever it may be, does not decide to take a crap on you.  God knows with all the money we spend on medicine and doctors we have no money for repairing that stuff.  Eat only cold and frozen stuff, I guess that  would help, but can't see my family being fine with me plopping the chicken still frozen on their plate for dinner and say ok let's eat, nor will the doctor be fine with me having Ice cream sundaes or sno cones for 3 meals a day all summer long. (now that, the kids may like.)   How about living in the bathtub or shower, well, not only will it make you very wrinkly, you won't get much done, and it could sky rocket your water bill.  So so far I am still stuck with just praying, which works, I do that alot.  I guess you can pray for rain to lower the temperature, but with that comes its own risk of pain issues.  You can use a rag to keep the back of your neck cool, that will  help some, but again, will need to be repeated and you won't be able to do it all the time.  Well it seems like we are stuck back at the fact that summer is here and we are going to have to deal with the heat.  Let me just remind you of a few very important things to remember,

1.  Drink, drink and drink some more.  Remember that your body will only show it is thirsty when it is in dire need, just because you are not thirsty, does not mean you don't need to drink.  Water is the best, but green tea with a little sugar can help too.  Green tea is known to help reduce the pain so if you are not a huge water person, go ahead and make some homemade green tea.

2.  Stay inside between the hours of 10 am and 2 pm.  This is the hottest time of the day.  If you need to be out, be in the shade as much as possible and follow the instructions in #1

3. Don't over do it people, we know what that leads to.  Take care of yourself and listen to your body, when you are tired, sit, relax, or go home and do more tomorrow.  What good are you gonna be if you are stuck in bed not being able to do anything or worse, in the hospital?

4. Heat can make you feel nauseated, eat little bits at a time.  Not eating will make you weak or cause problems for the host of other illnesses that you have.

I am not a doctor, but I have been through crazy hot summers before.  I have had to deal with this stupid illness during heat waves as well as blizzards.  I simply like to help when I can and I worry about my fellow spoonies, because we have to stick together.  I wish I could say if you do this then you will not hurt at all and you summer will be a piece of cake, but I can not.  I can tell you that you have to give yourself a break and realize that if you don't take care of yourself, then no one else will.  Enjoy the summer to the best of your ability, eat the good stuff, fresh fruits and veggies in season, make smore's and tell stories. I would also love to hear what you do to cool off or stay cool.

Me, I keep wondering, how bad can Alaska really be???????

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.

Tired

So it has been a week and a half since I started the new medicine.  I just have no idea what to think.  I am falling asleep sooner most nights.  I don't see the clock at 3:30 without having closed my eyes at all.  The major problem I see is I just feel so incredibly exhausted all the time.  Does this mean the medicine is making me more tired and I am still not getting the proper sleep even though I am going to sleep sooner, or does it mean the medicine is doing well, and there is something else wrong?  This is another one of those things that tend to drive me nuts.  Can anything at all be easy?  Can I just get a medicine that works and does not put me through a crazy spiral of changes to see if things will work out.  I, for the first time in my life, since I was an infant, slept in the car on a ride.  That is crazy for me. I guess I will give it more time to see what happens.  Maybe the fact that the weather is changing and I spent a weekend away from home and pushing to do more stuff than I would have had I been home just put me at exhaustion and I needed to and still need the extra sleep.  I really wish I could figure it out.  What is even worse is that I am having family down to my house for the holiday weekend coming up so I guess sleeping extra now probably is not a bad idea, and then next week I will probably be tired as well.  See hand then they wonder why things are so difficult for us.  Life does not make things easy, it would not be worth anything if it was handed to us, or at least that is what they keep saying.  As much as I really want a break, and would love a break, I guess I will just keep trying to move ahead, and if it means I have to go through this craziness of med changes and ups and downs again, at least I know I can be thankful I am still here to do it.

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.

Eating Right

Food is a huge part of everyday for every person. It is hard for every person to eat the right kind of food, and to eat "healthy". Add the fact that in order to prepare a meal it takes energy, energy which you may not have, you realize, eating "healthy" and fibromyalgia may not actually go together in your mind. It is, however, really important for you to eat properly. The really good news is that according to many of the things you read about what to eat for Fibro patients is the most basic form of the food. A complete raw food diet is not necessary but as with almost anything, avoiding highly processed foods is definitely recommended. They also state that avoiding such foods may also help lower pain levels. Eating foods in their natural states is also a whole lot easier for many of us. Is it not easier to grab a quick salad, then it is to actually cook a meal. Is it easier to grab an apple, then to dole out some potato chips. As with everything else you should always speak with your doctor before you change anything that you are doing. I am definitely not a doctor but am searching like all of us, for anything that will not only help with pain, but make things easier. Here is a link I found very informative and it also has a number of other links available right on the same page. Again, if there is anything you found that works for you, please pass it along to us. Anything that helps would be greatly appreciaated by all of us. Take care for now.
http://www.livestrong.com/article/107161-fibromyalgia-diet-nutrition/