Forever!!!!

     It has been a long time since I have been here, seems like forever.  It has been a crazy ride.  My son started football.  Practice at 7 am.  REALLY!!!  For those of us that have insomnia and don't get any sleep, 7 am is a horrible time.  So for 3 weeks in a row, he had to be at football camp/practice and 7 am.  then scrimmages on the weekend.  Bring that along with little sleep, a whole lot more moving around, being stuck in the car, school shopping, open house at school and just in general trying to get the last bit of summer in, Pain levels were and still are through the roof.  I have done very little on the computer for in those weeks.  It simply just hurt to much to even type.
     The one good thing that did happen in that time is my insurance company finally decided that they would approve my Cymbalta and I am back on it.  Now, we are slowly working at getting it back to the right levels so  it works the best the best for me.  Of course it is a slow process, but I can tell you, if I was not on the Cymbalta, I would not be moving at all.  I am still a bit worried about the cost since we have such a high deductible, but being able to get out of bed sometimes is worth it.
     I am also still waiting to hear something, anything from disability.  I have had to fill out two additional papers since my original form and they were obtaining my medical records.  I am hoping to hear from them soon, at least with some tidbit of info.  It truly is a shame that it takes so long for them to take care of all of this, especially since most of the time people truly need financial and medical assistance it will afford them.  I have my fingers crossed and keep praying.  I just keep doing what I can.
     With the weather change and the humidity dropping, things have also been a bit easier on me.  Outside is not quite as exhausting as it was.  I can actually sit outside in the sun for a bit and not feel like I am drained because the humidity took all my energy.  It has quieted down around my house as well.  Living in a beach resort town, things are quite crazy from mid may to Labor Day.  Weekends may be a bit crazy yet, especially this weekend since it is Delmarva Bike Weekend.  This is the weekend where the area is invaded by every kind of motorcycle you can imagine.  It is always a whole lot of fun to see all of the bikes, see them all cleaned up, decked out, and hear them roar down the road.  It also means a bunch of my friends from up home in PA will be heading down to join the festivities.  I hope I get to meet up with a couple of them to at least just say hi.  Of course, I don't have a motorcycle, I don't have enough balance, or strength, but I do totally like the tricycle ones.  Maybe someday, lol.
     Well, that is all that has happened since the last time I posted.  A whole lot of rest, and very little of anything else.  Hoping to keep up the best I can.  How have you been?   I hope all is well for you.

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 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.  

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!!!!!!!