Holiday season with Chronic Illness

Oh, how to begin, the good, the bad and the ugly says it all.  Great movie too.

My heart was overwhelmed being with my kids and new addition - semi daughter in-law - they aren't married but together for so long now we included her in our small family gathering.

The bad - the driving and the drama of family - outside immediate - and how hard it is to make everyone happy and comfortable and pretend you aren't hurting.

My husband's family was so great - I kept getting up to play with the little one's and my father-in-law kept putting me back to the couch to rest. 

The ugly - the aftermath and stress let down increase in pain that left me nearly paralyzed.  Kind of did also the week before.

I have been going back and forth between deep sorrow and crying and deep anger at things that are out of my control.  Working with my therapist and have my anti-anxiety medication but best tip from therapist and neurologist is to stay away from people that aggravate that part of me.  Hard to do - well I'm sad because I get lonely and I get angry that people aren't there for me in the way I want them to be.  And how hard it all is on my husband too.

And people I don't want to push away either.  I have to learn to accept people for who they are but it's difficult.  Then work adds another loss - and anger.

Then I hear horrible things that my ex-husband is doing and saying to my kids and that's hurt because I want to care for my kids and not have them have to deal with that crap and deep anger at the things he's doing and saying which I have to hold back around my kids.  Well, somewhat - I have to hold back the anger, but I also have to show them the right way. 

I pray for guidance on this issue especially!!!  I wish I had the means to protect them but with my disabilities that has been taken away - at least financially - and also being able to be there when I can't because I'm sick.

So, Good, Bad, and Ugly -

Tomorrow I go in for my first Botox treatment for my transcendent intractable chronic migraine.  They say it will hurt really bad and have given me medication to dope me up and topical anesthetic to put on before appointment - have to have help with that.  And have to have a driver.  They also said it would take 4-5 treatments to know if it will help or not - because of my condition.  And I change insurance companies January 1st so hopefully the new one will agree to the continued treatment and I don't only get the one trial.

Every year this season is so difficult as I am certain it is for many of you.  Even going to family events - my family is large - and still people wear perfumes, etc that make things worse.

I had some wonderful times - also including my son's 22nd birthday on the 21st of December which was really nice and we had a good time - went to dinner (very infrequently for me) and I did good - we stayed relaxed and spent time together.  He was happy.

Included in happy times and amongst my husband's wonderful gifts to me was so special - he's an artist - and he carved this balloon man for me!  Sorry the picture is a bit fuzzy but I have tremors and it's the best I can do.  Behind it you can't see is a flower pot but inside is a present from long ago he gave me - it's a metal sculpture of a flower - maybe a picture of that later.

I will leave you with this - as my eldest son left on Christmas day he stopped and said "Thank you for... for just being you."  What better present is there?

I wish you all the best and health and love and happiness.

Elizabeth

copyright Elizabeth Wakefield December 27, 2010

The Strong One, The Survivor - BEWARE DIFFICULT INFO IN BEGINNING

All my life since I can remember, I was told what distinguished me from my brothers and sisters and cousins and even aunts and uncles - I was the strong one, I was a survivor.  

I as a child endured a some horrible events.  It's hard to talk about, but I will very briefly state so that we can move on to how this vision of me by family and friends now greatly affects my disability.

I don't wish to go into details, but I will state that 1) I was sexually abused for 4 years by my step grandfather; 2) my mother which whom I lived had to work more than one job to take care of us and was difficult in the 70s - a baby sitter she hired sexually abused me - it was about a year into the other sexual abuse so I felt no where to turn; 3) my mother is bipolar and is incredible now, but as a child I dealt with her mania and depression and even her being in intensive care more than once and aunts/uncles and mostly my grandmother coming to be with us; 4) as a child I overheard my mother describing a brutal rape she endured at knife point by two assailants - I was supposed to be in bed.

As many children do I didn't come forward in a normal way about my abuse.  I told a friend at school immediately who told me that it happens to everyone and your not supposed to tell - we were children - and I see now she was being abused too.  After a year I told my older sister who told me not to tell anyone because it would upset my dad's new marriage but that if it kept on to tell her again.  I went into a shell.  For some reason after 4 years - my older sister now 16 and had stopped seeing my dad for a number of years so had not happened to her but very few times years before - anyway, I for some reason in the back of my mom's car on the way to the movies said to my sister "you know years ago when you said if something happened again I should tell you?  Well it hasn't stopped and been going on ever since."  She turned and said to my mother what I was talking about and then it was out of my hands.  My mother didn't go into the movies with us but spent time outside on the payphone.  By this time we lived far away.  Next I knew my mother had somehow gotten him off the streets as a mail carrier (through a friend of hers also in the post office) and we were going to court.  I must say that the nonhuman male when arrested admitted freely to the officer before the officer even said why he was there!?

So, because I was the strong one - being that my sister broke down and cried and cried and took the attention away from me - and I tried to be strong - my family decided I wouldn't testify - only my sister.  I, ironically, was in the care of his daughter - my stepmother - who was very angry at me for us being there and let it be known it was my fault.  

The outcome was the outcome, and not as harsh as my sister as I said was then 16 and didn't look like a child at all.  So, he was out to injure again, not me, but others and was on trial for those later.  My father decided to (because of my stepmother?) forgive him.  And I spent time as a teenager and later as an adult having to come into contact with him - no more.  And not EVER my sister.  It is what it is.

So, why do I say this was part of the start of it?  Well, it wasn't the start - even before this as a small child, I was told I was the strong one and would be able to handle anything.  This enhanced this feeling - I was told I was the strong one and a survivor while my sister couldn't handle it.  She needed help, but I could overcome.

This moves us forward a bit to a rough teenager I was, MESSED UP, but not in my family's eyes.  I would get through and I was strong and would overcome because I am a survivor.  Well, my messed up days ended with me making a horrible decision to come into a relationship with a man 26 while I was 16.  I became pregnant.  He was thrilled and wanted to marry me.  I said no.  Then, my sister, who was 20 became pregnant herself and my family decided that they needed to take care of my sister while I was strong and a survivor so my mother arranged my marriage within a week and then I was married.  I had a second child with my husband.  I WILL NEVER REGRET THOSE INCREDIBLE CHILDREN WHO ARE MY SOUL AND JOY AND HELPED KEEP ME STRONG.

Well, I can tell you this - although we are no longer together and I do not have good things to say about him - I am strong and I am a survivor.  As much as it hurts, they were right.  As I was going to college and getting older and smarter, this was bad in my now ex-husband's mind because I was quickly becoming smarter and more wise than he.  Abuse - whatever - we should have seen that coming with a 16 girl and 26 year old man.

I asked for a separation as I kept becoming more and more aware that I was better than this.  As a Catholic, I did not seek divorce, but he did and we were.  Because I am strong and a survivor I did make it through.

I can go through my ENTIRE life years after this during which times I had difficult times as I was only still 22 at divorce and am now almost 40, and did have MANY more times of difficulty and tragedy and was even myself a victim of rape.  But the importance of all is that I became the first of generation of the family to graduate college and get a good job and be successful at it - even very as I became a specialist in difficult areas.  I was strong and I did survive.  I did so mainly by my own means as my family gave me support in the manner of "rah, rah" talks, "you can do it," "you're the strong one" talks.  Very important, yes, and very helpful, yes.  They supported me by inspirational talks about how strong I was and how I was stronger than others and I could do it.  They were right.

In the meantime, and still, other members of my family, didn't get this kind of inspirational "go do it" talk.  They got "oh poor you" and financial assistance and all that jazz.  When I asked for help in this way, no, I got - You are strong and a survivor and YOU will make it.  They were right.

Let me say CLEARLY here that my now husband - INCREDIBLE - was not like this.  He told me I was strong, yes, but he comforted me and HE TOOK CARE OF ME and STILL DOES.  He goes FAR out of his way to do so.  His family is much the same towards me.  They also see me as very strong, but they also give me comfort.  Yes, inspirational too, but comfort and help.

Let me also say that I have friends that are the same.  I have friends that treat me as my family does and friends that are comforting and helpful.

LET ME ALSO BE CLEAR - MY FAMILY LOVES ME (and not all of my family is "inspirational talk only" by far as I have a vast family) - MY FAMILY WOULD GO TO THE ENDS OF THE EARTH FOR ME IF NEEDED WITHOUT QUESTION THEY WOULD WALK THROUGH FIRE!!!  I am NOT putting them down here - I am merely stating that some members of my family - a lot of them - see me as SO strong and such a survivor that if I am at my wit's end that the strength will boil up and I will overcome.  AND THEY ARE RIGHT so much of the time.  While others falter and lean on others, I do stand strong.  AND I AM PROUD OF THAT!!!

So, here we are, and my disabilities have put me into a very bad spot.  I am the Strong One, I am the Survivor.  I Shall overcome.  Well, as many of us with chronic illnesses know, there is no cure.  There is not cure for any of my disabilities in fact - they are hormonal or neurological problems for which there is not cure.

That of course does not mean that we cannot live a good and fruitful life.  We have to MANAGE our disabilities.  Unfortunately for me, recently - over the last few years, my disabilities have become debilitating.  So much so that I am now on disability from work.  Which is so sad and hurts.

I appreciate everyone of my family who is inspirational to me telling me I am strong and a survivor and will overcome.

I am appreciative of all of my friends who are the same.

I have had a hard time with some who see me as the strong one and the survivor believing that my disabilities will not be CURED.  That I will not overcome and be back to me the way I was before.  Because of this, and because of my constant pain and difficulties, I have had as MANY OF YOU HAVE had to endure LONELINESS as people draw away.  As people want the "old me" and don't like dealing with the "new me" - even when the "new me" tries so hard to hide my disabilities - although some cannot.  They don't want to talk about it - they just want the old me and are sure that I will with doctors overcome and be back.  It's like they feel like I'm not being me because I cannot be strong all the time and get the feeling and even have heard that if I just TRY HARDER I will overcome.

We all go through this - we all talk about it and listen to helpful accounts and suggestions in conferences during Invisible Illness Week.  These ARE so helpful.  (by the way this past September's and even older year's "conferences" can be accessed as I do and listen again to helpful tips at http://www.invisibleillnessweek.com at the virtual conference tab.)  

I am the Strong one and I am the Survivor.

Here now is the rub - the GIST.  Although all this is true, I NEED HELP SOMETIMES.  I AM LONELY.  I FEEL GREAT LOSS.  I NEED HELP SOMETIMES!!!

I have asked for help from those who see only the Strong One, the Survivor, and they say yes, of course.  And when the help comes, it is in the form of not what I requested, but an inspirational speech of how I will overcome this and how strong I am and I will get better and just have to believe it, etc...  I have broken down and cried and asked for specific help and I get much the same.  Now, I do get rides when I need them and help and support.  Which I love.  But sometimes you just need HELP!

I am the Strong one, I am a Survivor.  And as my grandmother said "This Too Shall Pass" and I will have better days and I will cope and will find my way back to a better life.

Right now, I am sad - I am in mourning.  I go from deep sorrow to anger to determination to overcome and back again.

I ask my husband to help and he drops everything and does anything for me.  He gets it!!! You know?

I have family members and friends that I can go to and talk with and they listen through it all and don't try to tell me I'm overreacting or need to be strong.  They are just there for me.  I have friends that although it's difficult with their busy lives, come over and spend what time they can with me.

But it has been ingrained in me that I am the Strong one, the Survivor.  So, I don't ask them to help me with dishes or the laundry or shopping for the holidays or the many things I need help with.  Because I have bought into what has been told to me all my life.  That I can do it.

An example, I had a medical bill from the early 90's when I was uninsured for a non-voluntary admission to the psych ward.  Later, when they figured out it was my thyroid that was causing the symptoms, all that disappeared.  Anyway, I didn't have the means to pay.  And I was a bit angry because I hadn't asked to be in the hospital.  Well, years past and it ended up going to a law firm for collection and I was sued and lost but remained unpaid.  Interest and other grew on it but I couldn't get it paid with other bills, kids, etc...  In October of this year, I received a letter that I must appear in court in November to give financial information and the judge stated "it will be no undue hardship on Elizabeth to appear."  Well, little did he know - I couldn't drive, I with my migraine would not be able to handle, NCS would cause me to faint, driving with my Essential Tremor was a bad idea, my husband worked that day - really he works everyday - and with constant migraine, narcolepsy and medications - I wouldn't make much sense.  AND - I was on disability so the financial information they were asking for wouldn't show my true financial state.  I asked a family member to help me.  This person came to my house and gave me a go-get 'em speech but said that would help me get an attorney to appear for me or would appear themselves on my behalf and not to worry.  So I didn't.  Then, came two days before the court appearance and nothing had been done to help me - and the day before when asked by my husband was "she's strong, she can handle it."  Well, as it turns out, no I didn't go to court because I couldn't - but I AM STRONG and my inner strength and adrenaline drew up from me and I called the law firm and took care of it - even got all the interest removed.  I took a distribution from my 401K and got it paid and no court date.  I did this myself.

What happened?  Well, I did it - I was strong and I did it - I also because of the adrenaline, suffered from worse pain for the next 4 days.  I truly needed help, but in the end I did it with my strength.

Which is why I say I do buy into it.  I don't ask for much of anything anymore.  I do hear a lot of "if you need anything, let me know" and I lay my burden on myself and mostly my husband - poor thing.

What I want desperately to hear is not "if you need anything, let me know" - but someone to specifically offer something specific that is help for me.  SPECIFIC - not the line that makes me feel bad if I do call and ask for something.  I've heard this same thing during the invisible illness week conference - so I KNOW that many of you that suffer chronic illness deal with the same thing.

I know also that strange as it may seem, that so many of us with chronic illnesses ALSO are incredibly strong people - we even feel badly asking for help.

So, I think I am not alone in the Strong one image, the Survivor image - and it is so hard to ask for help - especially when it is returned with an inspirational speech rather than the help you asked for.

I think that many are in worse shape than I am.  My children are grown - or nearly - my youngest a senior in high school - so I don't have issues of needing rides to or pick ups from soccer or whatever.  Or babysitting, or whatever.  I also am not in school anymore so I don't need the help dealing with exam weeks or studying.  I am not single and have such a loving and supportive husband so I don't have those issues - although the burden on him is also growing and heavy - and HE TOO doesn't ask for help EVEN FROM ME!  He needs help too.

I don't know how to end this - I've given some background that is really private and please don't feel bad about that - I could give other background that is horrible as well - my father not being in my life but being in my siblings lives which I don't understand what I have done to have him single me out.  A second horrible ending marriage (cheater) which nearly destroyed me.

I have been strong and I have survived and I became a very strong and successful individual.  But then the disabilities took hold and I can't fight them they way I fought through and overcame other things.  In fact, the more I fight, the worse it gets.  I want my life back too - but I need to find a new way to be strong and survive and a new me.  Right now it's hard to see me through the pain, but I don't give up ever.  I am strong and I am a survivor - that is true.

I guess all I can say is that my family - my grandmother, my mother - saw something in me as a very young child that is true.  How they saw it, I don't know - I think my grandmother and mother were in the former and is in the latter both INCREDIBLY STRONG women during even difficult times for women and even now my mother is a force of nature.  She battles her own demons and she survives and she is SO STRONG.  My grandmother was the strongest women I ever met.


It started with them seeing in me what was in them.  I am like them and I am proud of that.  I am Strong and I am a Survivor. 

I am proud of that.  And it will get me through this.  But I also need help and so does my husband - how do you ask?  I wish sometimes I didn't have to - that through all of this so many have seen what I need and they would just help.  What do you do?  Or are you like me?

And please don't worry about my past and concerns or sympathies about that - I have overcome - I share because it is part of who I have become.  I would rather the concerns and sympathy come for what I am now going through - my disabilities.

As always - I wish you all well.  I wish you strength and I wish you help.

Elizabeth

copyright owned by Elizabeth Wakefield, December 20, 2010

The "let down" from stress migraine trigger - UGGHHH!!!

So, Happy happy news!  I found out I was approved for my long term disability insurance!!!  That has been so much stress - financially (and then how all of that impacts my pain and anxiety).

I felt relief and relaxed some when I got the news - which by the way was by receiving a strange email from work which made me check the website again - which I did every day and had called the previous day - and on the website said approved - not a call and didn't receive the letter for 4 more days.  I still have to do the social security disability but am waiting to rest first till January as all the paperwork and all is stressful and hard.

Anyway, I felt SO much relief the night I found out on the website.  I had a lot of questions regarding money and budgeting and health insurance and all that - that's the CPA in me! - but I let it go that night and just relaxed that everything was going to be okay and whatever the answers to those questions were that at least we wouldn't be homeless and could pay bills and would figure out health insurance someway.

Now - let me be clear - I have chronic intractable migraine that is also transcendent.  Basically meaning that I am always in migraine state without stop.  So even the relief isn't a relief from all pain but was a relief. 

Say - oh I almost got political and was going to talk about torture or what some may say qualifies as torture - whether by our military or others.  I am thinking I will go with another analysis - don't want to hit any nerves.  I could have just left this paragraph out or deleted it - but for me this is stream of thought so there you have it - a useless paragraph.

So - to give an example of staying in pain but relaxed you have to imagine that relaxation isn't relief of pain but a let up of some pain or just finally some muscles relax without lots of meditation and foci. 

Let's go with an example not related to pain per se - that many can relate to.  Say that you owe $25,000 of CC debt and other debt home, school loans, loans for your kids to go to college, etc of $100,000.  And you have just enough coming in to cover interest and barely touch the principle amounts so in effect you feel like you are drowning and fighting your way through every day looking for a way to make things better or just be able to do more than pay interest that seems to go nowhere helpful to you.

Then you find out that you bought a lottery ticket on a whim and you don't win BIG - but you win enough to take down your credit card debt to $10,000 - still it is going to be difficult to get everything paid off and you don't have more to come in but now the interest charges each month are lower so with same payments more can go to principle and get the debt down much more quickly.

You still have issues and worries and stress, but you also have some relief - that is if you used your winnings to pay down debt and not go on some spending spree which you were smart and paid down debt in the scenario - otherwise you have done nothing to help your situation.

So you can see the sigh of relief, the breathing room, the light at the end of the tunnel.  For me, it meant not only helping financially because I was going to continue to have funds coming in rather than none, but also that I could go from worrying month to month to knowing I could truly focus now on feeling better.  Eight months ago I could get into a meditative state to do my yoga within 20 minutes (which is necessary because the pain tenses me up so much that yoga without such could injure me).  Then 2 - 4 months ago it was taking an hour or longer - sometimes much longer.  And in the past month I have been unable to.  Because of my anxiety disorder along with the migraine and everything got to tensed up and I try 3 + times a day at meditation and I can't reach what I was able to do before.  Sometimes I can after a long time but not like I used to.

So the relief I felt was like a much needed let go of tension and some relief of pain - although not gone.  I was so happy!

TO THE POINT!!!

The following day was good and I was feeling the same and then around 1:30 or 2pm BOOM!!! Massive increase in pain and for the next 5 days I could hardly move or talk or anything because the migraine was SO bad. 

That's when I remembered, yes stress is a migraine trigger for me as well as anxiety, weather, certain foods, many scents, lights, etc...  But also just like after the end of EVERY tax season even before the transcendent migraine I would crash hard and have bad migraine for days on end.

Because the let down from stress is also a migraine trigger for me!  YAY!!!  Oddly, I knew this but was so excited about the relaxation, it skipped me until a day after I was hit and couldn't figure out why it had gotten so much worse so fast and had checked diet, etc...

Same thing after Thanksgiving and my beautiful sister's birthday party.  I psyched myself up and adrenaline kicked in so I could attend - because I cancel so frequently - and really wanted to see family and be with them.  And after CRASH!!! 

My darling husband worried and at my sister's birthday party wanted me to leave because my head was hurting worse and worse and he was worried about the crash.  I had to explain to him that we knew and know it's coming!  But I need a life too. 
And even small things bring it on - like niece and nephew coming over to show costumes for Halloween and after I crash.  Like when I have to go out to the doctor or worse the store that we know after I crash! 

I explained that we have to live with the ups and downs just like if I go somewhere and someone is wearing something or an aisle in the store has smells that relapse me.  This is my life.  The good point of it all is that now that I have some stability with the approval of LTD for a little while I can focus on getting more of my life back.  That the ups and downs can be more managed as I get back to being able to get my meditation foci back and starting in January should be able to budget some to my acupuncturist again (whom I haven't been able to see due to finances since last April). 

Another awesome thing and again I have to say I am blessed with my team of doctors - I cry about it - my neurologist PA told me to go back to the acupuncturist when I could manage in my budget or to call and ask for reduced prices.  THAT IS AMAZING!!!  Not many neurologists would say go to your acupuncturist.  I remember the days when they wouldn't dare send you to a chiropractor.  (I kind of wish that was still the case as I have gotten no relief or help the many times I've tried with a chiropractor).  Just tell me WHY insurance won't pay for acupuncture?  It helps so many people!  Granted you have to get a good one that knows what he/she is doing but that's the same with any doctor.

I guess I'm writing this post - although I've gotten off track many times as per usual - to all of those who have "let down" from stress migraine triggers.  AND to those who may have it and don't realize.  If you are a student, do you find yourself in bad shape after finals?  If you are in writing and have to meet a deadline - any business for that matter where you are pushing to meet a deadline - do you find yourself in bad shape after it's over?  Everyone, do you find after the holidays you hit rock bottom - or sometimes during because perhaps you pushed to get ready for the holidays with guests, or going places and scheduling and shopping?

The "let down" migraine trigger is often over looked or misread to be caused by something else. 

So what do we do about it?  Well, let's not say there isn't anything we can do because we can.  We cannot obviously keep all triggers from occurring - it can happen at the store if you have multiple chemical sensitivity - you can't see it coming.  But, we can try to manage things.  We can try to not over achieve to meet a goal - personal or business.  What I mean is we can over achieve - but we can manage our time and our goals such that we aren't at a push where we are having to reach down and pull the adrenaline up to push us through only to crash later.  We can study on schedule so we don't cram for finals - maybe the migraine still comes but it is more manageable or not as lasting.

We can take control!  I have found oddly enough that so many migraineurs are also over-achievers.  I have heard comments and have been the person who pushed to be better and better and thought that my bosses would think more highly of me because I worked so hard even through my illness.  That I would be rewarded for pushing myself.  And I absolutely just as I have heard from others that we want to be the best and that we want our work to be OUTSTANDING.  All of that good - but not at the expense of your health.  I ended up from OUTSTANDING to on DISABILITY unable to work.  Which is so hard.

YOU and I are worth more.  We are worth putting our health first.  We are worth it!  And we will have set-backs and we should not demoralize ourselves for that.  A reminder I need often - which my incredible therapist helps me with but also has to remind me of again and again.

Take care of yourself.  Look out for signs of the "let down" migraine trigger.  And this isn't just migraines - my NCS also acts up with the "let down" from stress (and acts up from stress).

It isn't about having no stress because that is impossible.  And it isn't about not trying your best so you don't have a "let down" episode.  It's about managing your time, your life, your responsibilities.  It's about putting you first. 

And it's about not punishing yourself when you get it wrong.  We all do.  Twelve years as a CPA and every busy season (there are multiple ones during the year - 5 I dealt with) I tried to manage and not push and then did anyway.  Sometimes because I managed too well and so I felt badly for others and picked up their slack and pushed anyway.  It's great to be a team player.  I don't feel bad about that.  And I don't feel bad about the work I did.  Or when I pushed myself for a presentation that went great and then crashed.  I feel bad that that is what put me on disability.  I couldn't maintain because that was my job as I became an expert.  So I did great but I was always stress migraine or relapse "let down" migraine and once I was transcendent chronic migraine always in pain the increase made it impossible.  So, I am on disability.  I am going to now though be able to focus and learn and manage and learn to manage and as I get better at it - even still in pain - I hope to get back to work, however and whatever that may look like.

The "let down" migraine trigger - you don't see it coming or forget it's coming until it's too late.  I got hit just from getting good news that relaxed me.  How do you manage that?  Not get good news?  No, you move on which seemed impossible during those 5 days but even in a lot of pain now, I see, there is light.

So, what do you think about the "let down" migraine trigger?  Do you have it?  Did you not realize it until much later or perhaps until reading this and looking back?  What about non-migraineurs - do you have "let down" trigger that relapses your chronic illness?  What do you do about it?  I think the thing is being proactive, but it's too late a lot of time so what do you do if it's too late?  What about when you realize you've overdone it and it will come because of it - is there anything you do to lessen or abate it?

As always - I wish you all the best and I hope I've brought some light onto an issue.

Wishing you the best health and the best of the best!

Elizabeth

Pain Pain go away, come again another day - oh wait - don't

Short post as an update.  Pain is still really bad.  Tremor is doing - well about the same - but not worse.

I'm just tired of being in pain and I feel lonely.  I feel like people are pulling away from me, but in reality they are just living their lives and I am not functional enough to be out there and involved.

A friend told me not to take things so personally, but it's hard when you feel alone and yes, I know my friends/family are thinking about me, but I want to be involved!  I want company!  I miss my life!

So I go day by day...

But, although I know I have anxiety disorder, I have total reason to be anxious right now.

My short term disability is over Nov 1st unless it is extended and runs out Nov. 15th.  I've provided all paperwork as have my doctors but I have no answer yet on extension or on approval of long term disability.

I'm praying tomorrow will bring answers because how much longer can I wait to hear?  I thought I would have heard last week!

I am told to relax and trust that everything will be okay - but I like control - some semblance of it!  And I am totally out of control without this knowledge - I can't budget or anything!  Hard to do meditation and yoga right now.  I feel like it will all be okay but without knowing and it out of my control it is very difficult.

Pain got worse after my annual woman exam and then a little better and now stress seems to be making it unbearable!

I wish I could go back to work and then know money was coming in and health insurance covered, but I am simply too disabled to work - I couldn't if I pulled all my strength together. 

I have to trust and have faith.  As hard as it is to do right now. 

Thank heaven for my husband although he's pretty stressed right now too.  But he is so good to me. 

Faith we will make it through.  Dear Lord, please let me hear what's what tomorrow!

Hope this finds you all well - Best Wishes

Elizabeth

Narcolepsy and Chronic Migraine

I went to see my sleep doctor the other day as I do every six months to keep up on things.

I was referred to her from my neurologist for having sleep issues - one keeping me from having a good night's sleep - my neurologist thought it might be a contributor, never getting a good night's sleep, to my chronic intractable migraines.

I had no idea - this was almost 2 years ago.  I thought she was right that I didn't get good night's sleep but I thought was due to two things: 1) being in pain even while I slept; and 2) one thing I had experienced most of my adult life - "sleep paralysis with hallucinations" - I called them night terrors but have been corrected as night terrors are a different phenomenon.

Apparently, night terrors are not something the patient remembers and occur in deep sleep.

Sleep paralysis with hallucinations on the other hand (SPH I'll call it) can occur to anyone at any stage in their life but generally don't stay or reoccur often.  I had been having them nightly or almost nightly for years.  I would go sometimes weeks without them but they came back and would stay night after night keeping me from sleep.

SPH - basically occurs when you become conscious during REM sleep.  See, your body puts itself into a kind of comatose state during REM to keep you from acting out your dreams - running, etc).  So, when you become conscious (not what I knew was happening) you can't move and you have a terrified feeling.  You know you are in bed and what's around you but you can't move and start struggling to wake up.  With hallucinations, I can only describe my own, I would sense a presence, hear someone opening the door and coming in and toward me while I struggled to scream or move and couldn't, or a lot I would see a figure at the bottom of my bed and then moving toward me - coming at me - and I would struggle to scream or move and couldn't and was terrified.  I have had someone tell me they have seen two figures before so could be different.  It's a faceless figure and it is terrifying.  I would fight and fight to wake up and scream and eventually would get a little scream out and finally "wake up" and scream - alarming my husband as I bounded up to sit up.  I would be terrified, lie back down and go straight back into the same thing - over and over and over again for sometimes hours before I slept. 

Sometimes I would only think I had woken up and laid back down when I hadn't and it would start all over again - or pick up where it left off.  Needless to say - terrifying and then I would just try to stay awake.

As I said, this can happen to anyone.  But when I explained my chronic pain and these events when I slept - or tried to - my sleep doctor - who had worked for five years at the Michigan Head & Neurological Institute where I had been hospitalized so she knew those doctors and a lot about migraines - she said she thought it could be something else - Narcolepsy.  What?  I thought there is no way I have another disorder.  She talked to me about that it may be true I am having trouble with the migraines because I don't get a good night's sleep - more to the point that I wasn't getting enough deep sleep.  But the only way to truly diagnose Narcolepsy is through a sleep study in the hospital.  I had other symptoms, excessively tired during the day, more of a night owl, confusion and I would fall asleep when I didn't plan to when I thought I was staying awake - which annoyed my husband.  But I did not fall asleep in my soup or while driving, etc.  It wasn't like the movies - and she said rarely is.  Some of that and other is called cataplexy - so I was diagnosed after the sleep study with Narcolepsy without Cataplexy which is just as common as Narcolepsy with Cataplexy.  They actually couldn't determine if I had cataplexy unless an event occurred.  Ruling out my NCS as Cataplexy episodes.

The sleep study in the hospital was no fun as you are hooked up to all these wires and told when to sleep and when to be awake and when to take naps, etc.  I thought, I will never be able to sleep like this!  But I did, and they recorded all my data.  ONE of the primary ways to diagnose Narcolepsy is that you spend most of your sleep in REM and hardly any in deep sleep - causing the being tired during the day - and the wires and all record what state you are in.  The other is how long once you fall asleep it takes you to go into REM. 

Apparently the average person goes into REM sleep after about 90 minutes of sleep and then into REM again shortly before waking.  Having vivid dreams which I have always had - always felt like I dreamed all night - I thought that was normal - but other things also can cause this.  I didn't know that you really don't spend all that much time in REM.  Except for Narcolepsy - and me.  During the test I spent almost all night in REM and every time I came out of it and into deep sleep - the restful sleep - I would jump back out of it and back into REM.

As I said, narcolepsy is diagnosed also on how long it takes you to fall into REM.  In my test - I went into REM within 5 minutes of falling asleep all except twice in which it was still less than 10 minutes.  That's a diagnosis.

When I did research on the subject myself and the information packet they gave me I could tell that even though I had migraines, before my chronic non-stop migraine, I had these symptoms.  I just never added them up?  I thought I was tired because I was a single mom, working, going to school, then working 60+ hours a week and trying to take care of my kids and life, etc, etc, etc.  I thought the SPH - which I called night terrors were just a fact of my life because I had had a hard time as a child and it was a scar following me around.

As we waited for the diagnosis I told my husband there was NO way I had narcolepsy - he disagreed and said he thought I did.  He had teased me about it often but that was teasing.  Turns out, I have narcolepsy. 

There isn't anything they can do to stop the sleep cycle or force me to go into and stay in deep restful sleep.  The medication though has stopped the sleep paralysis with hallucinations - except one time I forgot to take my second pill and it happened again for two nights and when I was on a lower dosage it was happening according to my husband as he woke me up from screaming but I didn't remember it. 

I still have vivid dreams but am so relieved to not be scared to go to sleep.  I am still tired all the time, fall asleep when I don't mean to, etc. 

This is the best we can do right now.  They have suggested a medication that only one pharamacy in the US has - it's that regulated - but I have said no and my neurologist says no also.  Due to my past, etc.  It would keep me asleep - maybe - but I wouldn't have any control - the street name is GHB but of course this prescription would not have most of the bad side effects of a street made drug.  But, it is possible if I am woken up I could do anything and not have memory.  That is terrifying to me.

I know there is a medication on the market and I was prescribed but never took that is similar and I have friends that have taken it and found that they woke up and ate or other things and had no memory of it.  This is different than that in some way as that is available in all pharmacies.

So, one thing is good that I don't have the SPH - what I called night terrors anymore if I stick to my medication.  I still don't get enough restful deep sleep which absolutely contributes to my migraines and not being able to get a break away from the pain even while I'm asleep.  I am on disability now, so my sleep doctor suggested I take scheduled naps and go ahead and stay awake when I need to at night - basically - sleep when your body wants to.

Makes sense.  Sometimes I can't sleep because of how bad the migraine is but then I will feel like I lost time and find that I did go to sleep for awhile.  I'm tired but meditation helps that a lot.  Really a lot, when I can do well.  I have had trouble lately getting into a good meditative state due to the constant ringing in my ears and migraine and a couple times I have accidentally fallen asleep - narcolepsy.  But, when I do which is several times a week - have a good meditation and get into a good meditative state - when I have the time and no interruptions to take all the time I need - I feel rested and I can relax and then I can do a great yoga stretch as my muscles need it so badly.  They are so tight from the pain and without the meditation the stretch doesn't work because the pain is keeping the muscle bound and tight.

So, I guess I wanted to talk about my narcolepsy and give some support for others in that state.  Express my fear of sleep due to the "night terrors" which are not night terrors.  And show how multiple chronic illnesses can compound on each other.  Because of my narcolepsy I have more trouble with my chronic intractable migraine.  The pain, constant pain, that I tend to put first and foremost - because it screams the loudest.  Especially now that I'm not screaming in my sleep :)

Best wishes to all and take care of yourselves!

Essential Tremor and Chronic Migraines

Today I would like to talk about my Essential Tremor and chronic intractable migraine.  I have to input the migraine in there because it infiltrates everything as I have had the constant migraine for so long now.  It is hard to remember not being in pain.  I relish the days of getting 3-5 day migraines even twice or three times a month.  I wake with it, I sleep with it, it is always with me.  For a little while I had the pain management down so that even though it was constant it wasn't disabling completely but not now.  And it along with my anxiety disorder seem to have kick started into high gear my Essential Tremor which is now disabling.

I was diagnosed with Essential Tremor or Familial Tremor about 15 years ago - maybe longer but I think that's about right.  My tremors started long before but I didn't get diagnosed until it became a problem.  Oh, how I thought it was a problem then?  Being that it is so much worse now, I long for those days.

My mom has a tremor too as well as my husband.  Not bad, like mine was in the beginning.  And it could be that was all there would be for me as well.  Essential Tremor doesn't always progress or may progress so slowly that you are much older when it becomes a problem.  I thought since my mom's still wasn't that bad that mine also wouldn't get worse.

Let me back up.  I put a link in for the International Essential Tremor Foundation - a non-profit organization that has a lot of information about what it is, etc.  In the start my hands would tremble when I was trying to do something or if I wasn't paying attention but a small tremble.  I thought it was weird but if I concentrated I could get them to stop.  I practiced painting small figurines - something very precise - as an exercise to control the tremor.  Sometimes I would hold the small paint brush and as I got close to the figurine my hand would start to shake and I would have to stop and concentrate and maybe hold the hand with the other hand and then work to paint my figurine.

Then, it got worse - I wasn't able to paint small figurines but it still wasn't too bad.  But, it did cause me embarrassment at times.  If I was putting on mascara then I found that my hand holding the tube was shaking badly and uncontrollably - like because I wasn't paying attention to it I thought.  Embarrassing was when the same/similar thing would happen at work when I would go into my bosses office or another director or even colleagues office with papers in one hand and then start talking about something and not paying attention to that hand it would shake and the papers couldn't lie that it was happening - it was noticeable.  So then maybe only when I'm holding objects I thought and not paying attention to that hand.

Then, it was happening other times and places - embarrassing.  I taught a lot for my national firm classes with people from all over the country in our firm.  The subjects were sometimes basic - a class for first or second year CPAs on completing basic returns - and sometimes very technical - higher level CPAs and in depth technical tax topics as my specialty is.  It didn't seem to matter.  At this point I had been diagnosed.  I knew my hands may and probably would shake because they did that - it wasn't under my control.  I would try to always hold tight to a bottle of water and not papers.  I had to hold the remote for the slides - although I was always happy when it didn't work and I would have to go to the computer to move forward the slides.  I didn't have to hold notes in my hand because thankfully I seemed to have a gift for talking and when I used detailed notes it didn't feel right for me - I was better on the whim and I knew my subject and I could recall real life examples - new ones each time so it didn't get dry.

Then I found one time teaching a few students watching my hands - yes they were shaking - but it was a distraction - generally this is lower level classes but still.  I needed them to focus on the material and my words and not look at my hands OR think I was nervous which would lose their confidence in me.

So, I began starting classes with my introduction telling them that I was not cold nor nervous, I simply had a tremor that was genetic and no big deal and would happen and not to focus on it.  It was a great help!  I found people stopped looking and wondering and paying attention!  It only took a sentence at the beginning and no long explanation.  I remember one time part way through another teacher/organizer who had come in to the class room to listen asked in the middle of my presentation if I wanted the laser pointer and I said oh, no with the way I shake the students wouldn't know what I was trying to point at and better I go to the screen and touch it (something like that) and there was a laugh and then we moved on.  I was so happy.

I love to teach.  The tremors got worse and I never knew when I migraine would happen.  Or better to explain after I had the chronic constant migraine but low enough pain (or enough adrenaline because I loved teaching) I could still teach classes, but now I had to have sunglasses and be wary of students wearing a scent that could send me reeling!  I thought and was right, what worked before would work now.  I started off with the tremor sentence as before and then without going into "I have constant migraines" I just simply stated that I was prone to migraines and had light and smell sensitivity and that I would try to teach the class without my sunglasses on if we could lower the lights but even so, please be patient with me if I need to put them on.  Again, worked great.  Although NOW, during times classes were working on problems or during breaks especially someone would want to talk to me about my migraines and since these were students and worked for my company I didn't feel comfortable revealing all.  Of course some would want to say I have them too sometimes and a lot would want to say "have you tried..."  This was off topic and something I am very sensitive too since I have tried it - whatever it is - I haven't had anyone come up with an idea I haven't tried so it gets tiresome and aggravating and I can't express that in this situation.  So, as politely as I could I would weave my way through these conversations using distraction mostly to change the subject.

Okay so if it's happening teaching of course it is happening everywhere - client meetings!  And needing sunglasses at client meetings.  I tried the same thing as I did with classes - just say it quick and move on.  Here I am, a tax manager with high technical expertise working with clients on international tax/business transactions and other high technical matters.  I was mostly a consultants for colleagues' clients as my area was so technical based and brought in when their clients had issues - some of which meant my involvement for months or multiple times during the year and/or annually for a certain area so even if not my clients, I got to know them well.  Which worked out well when my disability due to migraines got so bad that I needed to reduce my personal client load and work from home, etc.  Being a consultant for colleagues worked great. 

It worked the same with clients as with teaching - clients were able to quickly move on and take me seriously and not think I was nervous from tremors or weird for sunglasses and we didn't focus or spend time on it and got down to business.  A lot of clients would automatically turn off or down the lights in the conference room when I was coming so I could have my sunglasses off and handy and not a word needed.  Now, clients that got to know me did often ask how I was doing, but I kept it short and we moved on.  Staff of clients - rather than the CFO or similar positions - on a smaller scale but when worked with me over a period of time did also want to offer suggestions and the like or send me emails asking how I was doing.  I was able to handle.

Then to my surprise I received a review from my Team Leader and our Head of Tax Department (I worked closely with my Team Leader as my supervisor and someone I worked with often and who honestly I think had some problems with me personally because I wasn't the person I used to be working 80 hour weeks and always on call since I had a few months earlier put in official (I had done unofficial but I thought was official requests) requests for special accommodations for my disabilities - only working 40 hours a week, working primarily from home, etc.  Well, they sat me down and told me that it was inappropriate for me to tell clients that I had any disability.  I asked well, isn't it better than them thinking I'm shaking because I'm nervous or that I'm wearing sunglasses because I'm "shady?"  They didn't care, they said I shouldn't tell anyone.  Oddly both of them had been present separately but on numerous occasions at client meetings where I did this and then we drove back to the office together and never once had they said then it was a problem - I just got praise.  I still have no idea where this review came from or why.  I can make assumptions or judgments but without knowing what goes on inside the head of someone else and without them telling you - you can't know.  I asked why they never mentioned it when they heard me do it numerous times before and I just got change of subject that it wasn't professional and that clients had complained.  I asked which clients but they wouldn't say - none of the clients ever acted that way toward me but perhaps someone felt uncomfortable and said something.

The same they said for my dealings with staff members - well I can't hide that I keep my lights off in my office and all the staff saw me go through the change and the doctor visits and all that - I only got questions and caring remarks.  Whatever.  But then also they said when having conference calls with clients or even working back and forth with clients on an issue and phone calls and emails that I shouldn't be telling them that I work from home.  Well, I never thought that would be a problem.  I simply told clients I worked primarily from home so they would know to call me on my cell if they wanted to get a hold of me.  I didn't say why I worked primarily from home - although some may have deduced.  I was being reprimanded for saying I was working from home?  I was supposed to lie and say I was in the office?  Still don't know.

Anyway, back to the issue and away from that drama my chronic pain and anxiety problems kick started my tremors much further.  Into my hands wildly and uncontrollably and added jerking, into my arms, into my legs at times - generally driving or standing and nervous - and it is bad.

Now, I can't eat a sandwich because I shake all the food out of it and have to set it down and put everything back in and try again.  But then eat with a fork and then my hand will shake so bad uncontrollably against the plate that my husband says I may shatter it.  I have to carry drinks with two hands and have a lid and straw or not fill a cup so I don't splash it everywhere.  Shaving is my legs is hazardous to say the least.  Trimming fingernails and toenails is a joke.  Seeing me put on makeup looks ridiculous as I lean my arms against things to steady them to do things.  Jewelry - bracelets I figured out although it takes some time I can hold one arm against the wall and the other somewhat if I am in a corner and I can get it done.  Earrings I try to keep simple and it takes a long time if there is a separate backing.  Brushing my teeth - again funny looking as I try to steady things.  Contact lenses - I may have to stop - I wear 30 day/night contacts which I tend to wear longer than a month but I have good eyes and no problems - yes hard to get in sometimes with shaking - takes time - BUT the last time I took them out it was too long and I jabbed myself in the eye with my hand jerking that it was ridiculous and I'm nervous about putting back in.  I usually go a couple months contacts then a couple months glasses - if my tremors don't get under control, contacts are history so I don't damage my eyes.  Oh, so many other activities I could tell you about but you get the picture.

So, then there is the public, as I said, it's bad now, really bad and I can't control it.  I am on short term disability and was when it got this bad so no client issues but when I go to a store and I'm shaking so bad it isn't my imagination that many people look at me like a junkie.  I already don't look great with losing my hair from my hypothyroidism, sunglasses inside and maybe a hat due to migraine pain and I look weary - pain does that to you.  Then, I'm shaking and I see it in their eyes.  I say I have a tremor like Katherine Hepburn and it's no big deal, but apparently there are a lot of people that don't remember her - young generation - and they take a step back/sideways glance and I can see they still think junkie.  I try to explain further but with my constant pain the more I talk sometimes the less sense I make and it makes it worse.  I hate that so much.

But I had a good experience the other day.  My husband was at work and I had to go to get something copied and faxed and something expressed mailed.  So, off I went - I thought maybe I can do the copy and fax machine myself but my hands and arms said NO.  So, I mustered my courage and went to the clerk and said "I have a disability and I know you have self serve but I can't use them and here's what I need."  I explained no further what my disability/disabilities were or anything else.  And the clerk saw me shaking uncontrollably as I tried to hand her the papers and she saw me need to sit down and cover my head but she didn't ask and she helped me!  Then, the post office - I had courage now, although I also had severe pain now since I had been out doing things for over an hour - too long.  But, I knew that the express mail label needed to be filled out there and the papers put in the envelope.  I waited in line and went when called and said "I have a disability and I need help - can you put this in the envelope and then fill out the express mail card for me please?  I know I should generally but I am not able."  I said nothing else and she also helped me without hesitation or further questioning.  And neither asked me to tell them more or anything.  It felt great although I did have to come home and take medication and rest for hours to be able to move again - first thing Meditation as soon as I was able to concentrate again.  Then yoga stretching and more rest.

I hate that two small errands takes everything out of me and more but the great news is I succeeded and I got help and maybe other customers looked at me strangely but I don't know, I didn't pay attention to that because the clerk was helping me and didn't do so.  It was such a success and such a lesson for me.

My neurologist says that it is the anxiety more than the constant pain that kick started my Essential Tremor to accelerate.  I think pain too - because I have anxiety about pain and fear of pain.  Anyway, I did some research and it showed that anxiety can be a cause of an Essential Tremor accelerating to next level.  Bad news is it also said that once accelerated it is hard to stop and very unlikely to reverse.  Bad for me that one of the next levels could be head and neck tremors which my migraine would not handle well as head movement of any kind causes a lot of pain.  I have to be careful and always slowly move my head.  If I turn my head at a noise - sharp increase in migraine pain.  So I do not want an uncontrollable tremor to end up there.

I think that's why my neurologist the last two visits has been intent on focusing on the tremor with the migraine.  Now, there are medications I've tried before for Essential Tremor - propanolol (sp) and others but they all lower your blood pressure.  Well, here's where my NCS comes in - I have low low blood pressure normally and lowering it causes NCS episodes - fainting, etc.  So, those are bad.

My neurologist is working on medications that both show promise with migraine pain and with tremors.  They don't want it worse.  The first one didn't work for more than one reason and the second I am now on takes like a month to ramp up on so I'm still not yet on the full dose.  But, I have noticed that for a little while after I take it the tremor isn't as bad but then comes back.  I take three times a day but not at first and as I said not fully ramped up on full dosage.  I still have all the problems I had before but I do see a time after I take the medication that it seems less and that it gets worse when I get more active or more nervous/anxious about something.  So, I am hopeful.  I don't expect it to reverse my tremors from the level it is at now, just hopefully keep it from advancing any further and my neurologist plan as well.

So, there's some information, some personal stories, some bad news and some good news.

For those with Essential Tremor or with a tremor that you haven't had diagnosed, as I said there is a link attached.  But you should see a doctor.  Some tremors are due to medications or may be another type of Tremor diagnostically. 

Even if you have a tremor due to medication - I hope this entry gives you some feeling that you are not alone. 

As always I hope you are all well and find something in here that you can relate to and that you know you are not alone.  Chronic illnesses and disabilities are difficult to live with but we can do it and we can find hope and friends and support.

Take care of yourselves,

Elizabeth 

Multiple Chronic Illnesses

As you may have seen I have changed the name of my blog and the info about myself.  I had originally started this blog to talk about my chronic intractable migraines.  But, I noticed that through my blogs my other chronic conditions interfere/interact/co-exist and shouldn't be denied. 

Rather than simply referring to them all the time I need to give them the credit they deserve.

I was writing a post - that I have not published yet - and in doing so started some research on another of my chronic illnesses.  I have been in so much pain for so long due to the non-stop migraine that I saw everything - even those illnesses that I had been diagnosed with previously - through the haze of the chronic migraine.  I then took the time to start research on each of my chronic illnesses.  I didn't come up with anything that doctor's hadn't told me but I also was lately the last few years also only hearing them through the fog of the chronic migraine.  Somehow I had convinced myself if I fixed the one the others wouldn't be a problem.

In doing the research freeing my mind I found I cried and found that I came out of the haze and the fog and saw my illnesses for what they are.  A part of me, and even if a magical cure which doesn't exist for my migraines came about, I would still have to live with these illnesses and their disabilities and I needed to recognize that. 

Although it is sad it is also empowering.  I have become stronger for it. 

I live with Hypothyroidism - those of you living with it understand how hard it is and I did keep it separate as something I had to deal with.  Every time you think you have it under control, it goes out of whack again.  Yes, that is partially due to the interaction with my being in chronic pain.  But, I have to live with the hair loss, the bouncing of symptoms when my levels go up or down with the thyroid hormone substitute and with how all interacts with my sleep cycle with pain, with other medications, etc.

I live with Anxiety - I have all my life.  It causes the pain to get worse, it causes other conditions, like my Essential Tremor, to get worse.  It interrupts and interferes with my life.

I live with Chronic Intractable Migraines - I have had migraines all my life - you can read the blog - and they got more and more often but always lasted 3-5 days or longer.  It got to where I had them 3-5 times a month and it was extremely interfering with my life.  Well, I thought that was bad.  In January 2008, I got a migraine and it didn't go away in 3 days, in 5 days, in 2 weeks, in fact it is still here - it is here when I sleep, when I awake, when I try to rest, always I live with it and good days are still very bad pain.

I live with NCS - a type of Dysautonomia - it is also called vasovagal syncope.  Technical term is Neurocardiogenic Syncope.  It causes fainting episodes during which I have "seizure like" movements.  But in research I found it affects me even when I am not having an episode.  See my post from August 2009 on my top 5 most embarrassing fainting episodes as I tried to bring some humor.  People that have seen it - like my husband while we were still dating - see it as extremely scary.

I live with Narcolepsy w/o cataplexy - it is so hard to describe because people automatically think of the amusing Hollywood interpretation - but it isn't like that and it is an invisible illness and people think you are find and can't understand what's wrong with you.  Thankfully I had the sleep study that confirmed my symptoms and gave me a diagnosis.

I have Essential Tremor - some people call it familial tremor since it is hereditary.  You may be able to go through most of your life with minor hand tremors that don't interfere with your life.  For me, the chronic pain and the anxiety have kicked it into high gear.  Although it was getting bad before that - I recognize that now.  I thought that because my mother has tremors but they still aren't that bad that it would be a long long time before it became a problem for me.  My Essential Tremor is now of great concern to my doctor's as it has kicked into high gear.  It is embarrassing as people (strangers) look at me as if I am a junkie or something; sometimes my legs shake too much to drive.  Writing is almost impossible now.  But, the joke is trying to take out contacts or trim fingernails or eat a sandwich!  I can talk more about that later.

I live with Tinnitus - a constant ringing in the ears.  It started as a precursor to migraine attacks - like a warning - but when my constant migraine came so did the Tinnitus start and never end.  This may seem small but for those who live with it you feel like you are going crazy - let alone it being hard to hear others, not being able to stand the silence because the ringing is all there is, and other things.


I have low blood pressure - which apparently is common with a lot of people, but not all, with chronic migraines.  Generally, I run around 101/72 - not bad - but is a problem because medicines for my Essential Tremor and other illnesses lower my blood pressure so I can't take them.  And pain and anxiety lower it further - I was at the doctor on Tuesday and it was 82/60 - well what can I do about that.  Be happy that I don't have high blood pressure, YES, but not be able to take certain medications and feel faint a lot - not good.

Lately - over the last 8 months about - I have started dropping weight significantly.  I have rarely been overweight - pregnancy (I gained 80 pounds with my first and 60 with my second); and after having been put on high doses of steroids in the summer of 2008 I gained a lot of weight.  But, now I keep losing.  I was happy when I was back to where I was before the steroids, but it kept going and keeps going.  So, we have to be careful with medications that may cause me to lose weight or be more nauseous than the migraines may already make me.

I do not think I have multiple chemical sensitivity but with my chronic migraines I am extremely sensitive - I cannot know when a smell will hit me unexpectedly in a store or wherever and my pain spikes so quick I go into a faint.

I plan to write blogs on each of these but the real truth is that every blog about any of them is affected by one or more of the others.


More later - much love and take care,

Elizabeth

Migraine, Migraine, Migraine - and Familial Tremors

Okay - so I have suffered from migraines almost my entire life.  So what I think at this point.  I have suffered from non-stop constant migraine with  no let up since January 2008.  Oh, I take that back.  I did have a let up after my visit to the Michigan Head Pain & Neurological Institute where I was hospitalized for three weeks after having been hospitalized here and gone through so many other treatments here.  Thank goodness my neurologist knows and works with them at MHNI. 

But, the pain came back when I went back to work and dealt with that and was back in my normal life.  As normal as could be.  Now I live with constant pain at a high level - usually average daily 7-71/2 on a 10 scale with spikes up every day to 9 or above at times and when I take my medications the pain can get down to as low as a 5 or 6.  But that's it.  That's what I live with.  I have been once again placed on short term disability and have been since May and am not seeing improvement.

I think I have gotten used to some of my medications and my doctor is making some changes to see if that helps.  I'm not your normal even chronic migraine sufferer - like who is? - I can't take any normal migraine medications - the triptans - because I have vaso-spasms and they worry about stroke.  They also worry that the longer I am in constant pain the chance of stoke goes up.

I also am hypothyroid severely and so I have to manage my thyroid with my migraine medications.  I also have narcolepsy without cataplexy - meaning I don't nod off unexpectedly like they show in funny movies - which it isn't - but I have trouble - hah trouble, I don't reach deep sleep very often.  I go straight to REM and stay there and awake and have what I used to call night terrors but actually is called "sleep paralysis with hallucinations" and is common with narcolepsy and can happen occasionally to anyone but was happening to me a lot.  Basically your body puts you into a paralytic state when you are in REM sleep so you do not act out your dreams - good - bad when you become conscious during REM and then also have hallucinations and feel like you can't move or wake up - because you can't - and it is extremely scary.  Too much on that one - the medication they gave me has helped tremendously with that.  I also have NCS which is a type of vasovagal syncope.  I pass out at unusual and bad times - see my post of most embarrassing fainting episodes.

If that isn't enough, my blood pressure runs very low normally.  Apparently it is more common with migraine patients than I had thought.  Anyhow, my other condition is a familial tremor.  Not a big deal it was when I had a slight tremor in my hands that got worse now and again and was told that would get worse and move into my arms, legs and neck and head as I got older.  I thought, Kathryn Hepburn rocks so no big deal and my mom has tremors and it's still just in her hands. 

Well, the constant migraine pain kicked it into high gear.  I shake so bad now that the doctors and my husband and grown sons don't want me driving because it shows up in my legs while I'm driving.  I still drive to the doctor but everyone's at work so I have to.  The tremor gets to where I can't control it at all and I shake all the food off my fork or out of my sandwich before I can get it to my mouth.  Then, so bad I can't get my contacts out because the tremor decides to also become a jerk and I keep poking myself in the eye.  I have to have people fill out paperwork for me because I can't write.  And I have a hard time reading when I shake the book or paper and if I don't then the migraine causes a twitch in my eye - minor - but enough to cause major pain.  The computer is better because I can make the words bigger.  I miss reading. 

I miss not feeling like a freak and I miss not being a part of the world - contributing like I used to.  Now, I have to pat myself on the back for very small achievements.  And that's okay.  I am here and I will be okay.  I will survive.  I hate feeling like I wonder what others are thinking when they see me and I can't give my medical history to everyone that sees me because then they think I'm more of a freak.

And then I hate that the people close to me that care about me and understand go through periods where they don't understand and are tired of me.  Not of me but they miss the real me - the old me - and want me better.  I do too - but I can't force that to happen.  I tried.  It put me back on disability and with the knowledge that when it's medical - no matter how many other obstacles you've overcome in your life - you have to let go and meditate and relax and not push and force your way out of this one.  It tends to make migraines worse.

That's all for now - been awhile since I wrote - I'm going to try to do so a lot more often.  I'm looking forward to invisible illness awareness week and the free conference - see link - week of September 13th.  Last year's I got a lot out of.

Love to all and take care of yourselves.

Why am I still awake?

So, it's 5:10 am and I have been awake all day and all night.  Not for work since I've been put on short term disability to rest and rest and rest.

I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions. 

Thus making it difficult to fall asleep.

I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it.  Why?  Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up.  So, I will hold off until after the appointment and then get some rest.

Of course, that means I likely will be up tomorrow night - or tonight I guess. 

I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping.  Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.

This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall.  His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place.  Very proud mama and so glad I got to go to the meet and watch them.

They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz.  Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day.  So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s

They eat army meals from in the field in between competitions when they have time.  My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes.  It was the first time they had won the 10K in a while.

At the end there is an awards ceremony where all the teams are their army best at attention.  It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job. 

I am talking about a grueling day of pushing themselves to the limit.  Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks!  These are high school kids going through this.  You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)

So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability? 

Because it is a marathon and then some.  Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc.  And then after that more obstacles and we are pushing and fighting to make our way through.

I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -

But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going.  I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.

Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.

I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.

And that's what we do everyday.

So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest.  It takes rest too.  To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.

So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.

And here's to my son of whom I am so proud!  And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.

Love all!
Elizabeth

Been Gone So Long - The Migraine Story Continues

Well, I apologize for being gone so long.  I am a CPA and it was tax season.  Per doctor's orders I was only to work 40-45 hours/week but then I got some reprimand that made me fairly sure that my job was at stake if I didn't "step it up" so I ended up working 75 hour weeks and my migraine is very angry about that.

This week my doctor put me on short term disability to try to get the rest I need to try to get back under control.  So far, the pain hasn't let up and I am not doing well.

I know logically and truly that things will work out and I will get better and find my way.  However, I am pretty depressed and angry at myself for not being able to overcome this obstacle - this migraine.

I have had SO MANY obstacles in life so far, and I have overcome them all or hurdled them and become successful.  I have had this migraine since January 2008! and I have worked SO hard to overcome, to live with it, to be able to manage it, to hurdle it.  I've had migraines almost my whole life and was having them up to 5 times a month - 3-4 days in a row, and I hurdled that.  In 2008 I realized that I was going to have to adjust my definition of success and back down for my health now that my migraines had become a disability.

Without having worked, I took a shower and couldn't even get to shaving my legs before it was too painful, I got out and laid down and then got up and then fainted - my NCS - and then laid there for 1/2 an hour, and then got up and it hit me again - took me over an hour to recover from a short shower.  It was the same while working so I guess I'm not rested enough yet.  This is a true disability and this is just one example of how my disability has disrupted my life.  When it takes more than 5 spoons just to shower!

It has gotten worse and worse and now I am finding I can't overcome this and I can't hurdle this.  The migraine disability is winning and I am SO mad at myself for this.  I feel like a failure.  I know I am not and my doctors have told me that they are so proud of me and how hard I have fought.  But, that I need to rest and let go and stop fighting so hard.  I know that things will work out but for a little while I need to be depressed.

I need to be able to mourn the loss of my dreams, even my watered down dreams.  I will make new ones and I will survive and be successful in another way, a new definition.  I will be okay.  But, please give me time to mourn.

To everyone out there in my situation and those in similar situations or facing trials of your own.  Be strong, know that "This Too Shall Pass" and keep dreaming.  But, also give yourself time to mourn and to feel your feelings - just don't let it go too long so you can pick yourself back up.

I'll pick myself up and will be strong, after my mourning period.

Love and good luck to all - more later and not as long this time!

Getting older

Doesn't it just bug you when little things remind you that you are getting older?  Me too!  I am happy thinking of my age as a hypothetical - not something I want to think about and I can just go with what age I feel like.  But, when something reminds me of my age and that I'm getting older, then I start thinking about money and if my health problems will get worse, and what other health issues may arise, etc.  As well as thinking, I don't want to get older.

Reminder the first recently - my 21 (YES 21) year old son just moved out to his own apartment where I co-signed the lease.  Move out?  I can't pretend he's younger and so am I if he moves out on his own.  Plus I miss him and miss having my baby boy - so long ago that he was 6 and dressed as Batman or 10 in Tai Kwon Do lessons on my old home videos.  He's grown up means I'm grown up even more!

Reminder the second recently - my youngest son, my baby, is turning 17 (YES 17) on Monday.  Starting college a year and a half from now!  I miss my young children.  Yes, I know the purpose is for them to grow up and realize their dreams and be independent and I want that for them.  But, how did it happen so quickly?  It was just yesterday he was 4 and convinced that St. Patrick's day (his name is Patrick) was a holiday that was created just for him and wouldn't be swayed (I folded and bought him a present, I kept explaining that St. Patrick Day was named for a saint, but he responded "yes, I am really good" - gotta give in to that).  So, I work on finances for his college tuition coming up and worry if he'll be happy and make good decisions.

Funny story - my 21 year old said when he came back after having been moved out a week that he thought my migraines would improve after he moved out?  I never knew he thought he was a factor in that?

So, I am getting older and am budgeting savings, retirement, debt, etc.  As a CPA, I am great with a spreadsheet and budgets and actually enjoy working with them - better with someone else's numbers - so not all that bad and I'm in bad shape due to health costs on me but not as bad off as others are so I have to be thankful.

How much longer till I cannot work?  Well, last week, my neurologist said that if we don't see improvement then sooner or later they will require I go on disability and reduce my work to half time or less or none.  So, that's a worry. 

Then, I think maybe age will improve my conditions?  Some women after menopause see an improvement in their migraines?  But, I know too many who don't.  And then, my neuro talks about the white matter building in my brain from constant pain and increased risk of stroke as it continues.  Perhaps that means I need to save quicker and be more efficient to retire sooner to lower the risk?  Since I can't seem to stop the pain and it's primarily caused by stress.

Then, there's the fact that due to my disability, my career growth has been stunted.  I do well where I am but the company won't promote me or grow my career so my income is going to flatten.  Change jobs?  Change their minds?  Possibilities, but I'll worry about that later - just not too much later because the clock is ticking.

One thing I do know, every woman in my life close to me - friends and family - say the 40s are/were the best years of their life.  So, I am not going to be afraid of the number.  I adore my friends and family and my incredible husband who takes such good care of me - and me of him financially (for now) since he's an artist and I'm the breadwinner.

I hate my pain but I am happy with my life and I want to remember my life and events not being taken over by the pain.  That's the task, changing that - since right now the pain is in control. 

I still have good times.  A great memory from recent is last November seeing 75 year old Leonard Cohen in concert just after our wedding anniversary (one of his songs was our first dance song).  Seeing one of the greatest poets and writers of our time perform flawlessly and incredibly and skip off stage for 4 (YES 4) encores.  so, I have to say, age doesn't stop everyone.  Love you, Leonard Cohen - You are The Man.

I do want to talk more about my IV therapy and other things that I think are going to help, but want to see how they play out first.

Love and hope for pain free days for you as always,

Elizabeth

Awards Season

So, it's awards season for the movies of 2009.  And I am way behind in seeing movies and being ready.

Backup - I love awards season and the awards shows.  I know a lot of people don't care for them or think they don't make good picks, etc., but I think they are fun.  Especially the Oscars.  I don't always agree with their nominations or the choice for winners either, but still love to watch and discuss.

Every year since 2004, my friend and I have hosted an Oscar Party.  It is so much fun to get ready for it as well as the party itself.  We are both accountants and it's a time to be creative.  We make a poster of the nominations in major categories including pictures of actors, directors both in character/job and as normal - it's neat sometimes to see the difference in character pictures vs their actual appearance - and give descriptions, how many times nominated and for what films, etc.  We also make a poster board of every movie nominated in every category and give people stickers to mark what movies they've seen - we give a prize to the guest who has seen the most nominated films - some people come thinking they haven't seen many and then realize they've seen a lot more when they count other categories like song, sound, and other technical categories.

Then there's the display, for each movie nominated for best picture we do a food dish that relates to that movie in some way, a picture of the poster for the movie and also other displays/props that relate to the movie.  To do this, you have to have seen the movie!  This year they will have 10 rather than 5 best picture nominees which will be a huge jump and a lot more work - we've thought about giving certain guests the chance to bring their own food/display for 5 of the nominees so we only have to continue with 5 ourselves.  We also do the ballot game, having everyone fill out ballots and then give prizes for most picks right and sometimes a prize for least picks right.  I think we are eliminating that one this year because we found some guests were trying to lose and that's a waste of the money we spend on the prizes.

Anyway, my point is that by this time I have already in the fall made a list of movies I think have a chance of nominations and seen as many on the list as they come out and then when the other awards shows nominations come out, adjust my list as necessary and the movies I need to see and have some ideas for props/food/display for what I think may be a best picture nomination.

Due to my migraine disability being so bad lately, I am nowhere - not even step one, nor have I seen very many movies.  I love this time of year partly because of what I do to get ready for it and because it causes me to see movies I may have passed up seeing otherwise and then end up being a movie I love so I am so happy that the awards season got me to see the movie - even if it didn't end up with a nomination.

I have seen a few movies that are being talked about, and I need to feel grateful for that.  I can't help that going to the movies is more painful than it used to be or causes me to be worse off for a while painwise.  I need to be patting myself on the back for what I can do and not beating myself up for what I can't do.  Sure, I usually am at the top of the list, if not top, of having seen the most movies (not that I get the award, it goes to a guest) but that just won't be this year and I have to get over it. 

I am thankful my son and I saw Avatar on Christmas Eve.  It's nominated for a Golden Globe as well as Inglorious Bastards which I saw in September.  And Hurt Locker is on InDemand so I can watch here at home.  So, I am on my way a little. 

I am going to look forward to the awards shows and our Oscar Party and not feel down about my situation being different than other years.

One thing though - we switch every year whose house we have it at and this is my year - have to enlist hubby's help in getting the house ready and really cleaned up for it.  Don't have the energy I used to and have to take lots of breaks.  But, I know this so I will start earlier than usual and take breaks and ask for help.

Good luck to all the nominees at the Golden Globes tomorrow night (or tonight now - its 2:20 in the am).

I have trouble sleeping with the pain and so my sleep schedule is a bit awry.

I will not let my migraine disability control me and my ability to have this enjoyment!