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!

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.

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. 

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.

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!

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!

5 Ways to Help Friends and Family Manage Chronic Pain | Dancing with Pain®

5 Ways to Help Friends and Family Manage Chronic Pain | Dancing with 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.