Monday, October 5, 2015

Ila In Japan

An open Letter to Ms. Ila.

You are a precious soul.  So glad you too have had the chance to experience this wonderful miracle of radical, life changing, strabismus surgery.

Your validation on this subject means the world to me.

Sincerely yours,

Friday, December 26, 2014

The Pain Rehab Clinic at the Mayo Clinic In Rochester

Nov. 17-December 10th 2014 I attended the PRC ( Pain Rehab Clinic).
Four years ago, and aproximately just one year after my eye surgery, my eye doctor suggested maybe I should go to the Pain rehab clinic....  I was no where near ready then.

I thought it was a last resort kind of a thing.  I thought we had to exhaust ALL other possible solutions.  I felt if I went there it meant I 'gave up' on finding a cure.

Last August (2014) in my neurologist office I finally came to that point.  I had done it all, I have looked under every rock conceivable and was only surviving by the grace of Indomethician also called Indocin.

Indocin is no panacea either I guess.  After using it for long you run into more and more complications worst of which is stomach and kidney issues.  And I seem to reach a threshold where it no longer works.

I have done every conservative medical attempt.  More medications and combinations of medications than you can shake a stick at.  9 Steroid injections to the orbit.  Blood tests etc.  I stop at further surgeries to try to remedy the situation.  I learned at the PRC, 41% of surgeries result in a chronic pain condition.  I've had many a surgery.  Nine to be exact, 5 on my eyes, its no wonder I ended up with a chronic pain condition. I suppose it was bound to happen.

I have done every sort of natural remedy. And I still include some in my repertoire.  I frequently use acupuncture, massage and chiropractic.  Essential oils and Cranial sacral techniques.
I have tried some pretty 'far out there' methods.
I have learned from each modality.  However, nothing lasted.  Everything is just chasing symptoms.  Everything was reactive to the pain.

Before submitting to the PRC, I was a nervous wreck!  After I got into the program, about 4 days in, I wondered what all the anxiety was about.  Its nothing scary.

The pain, I was scared of the pain increasing I guess .  It is a commonly known fact they will pull all your crutches, that included Indocin.  Muscle relaxers, and especially narcotics. You know no other way then what you were doing.  So there is a level of anxiety that only those facing the PRC understand. My thought was I have seen every specialist on the matter.  Each gave their very best attempt and they couldnt solve it, why should I believe these bunch of 'specialist?'
But, I made the decision to go and once I make a decision I usually go full force into it.  It was all or nothing when it came to the Pain Rehab program.  I was determined to give it my all.  It was my last hope.  The statistics show it works for a lot of people I wanted to be one of the winners.  If the program didnt work for me I didn't want it to be because I didnt try hard enough.   If you ask them, I didnt just roll over and accept every morsel the "tribunal" of doctors were telling me.  But I did weigh heavily what they all said and applied what we had all come to agree on.  Anyone doctor who's had me knows I'm one to raise questions or voice my strong concerns.  The team at the PRC met every concern I had and then some.

They asked me to ween off slowly from my indocin.  So I wasnt in pain the first week.  Which was good. And the Second week I still was allowed one indocin a day.  ( I usually took two a day)
I got off the indocin about 8 days earlier than they asked over the long holiday weekend at home.  I wanted to test out life with their new suggestions in place of my old coping mechanisms.

I liked to report back to my friends and family that my 'captors were kind'
I bonded with my captors.  :) Much like Stokholm Syndrome. But all kidding aside,  They are all very nice and really do want to help you cope.

Before atteneding I searched the web for personal experiences about the PRC only to find a lot of negative talk.  It scared me. I kept reasoning, 'surely, it can't be THAT bad, Its Mayo after all! They're brilliant at everything else! Why wouldnt they do this right!"
Sure enough.  it does help!
I'm Glad I went through it. Now, I am allowed 2 days a week of NSAIDS or pain meds to treat Migraine and eye pain.  The rest of the days I do pretty good with out any pain meds and use the techniques taught at the clinic on a daily basis, not just when in dire pain.

Its not always easy to follow the guidelines they set out for you but it gives you focus on what to aim for.  I finally feel I can stop searching under ever rock for a solution. I am the solution. I have it in me.  And the few times that I may feel the situation is getting out of control? well, I have quality people I can count on.

Is it revolutionary what they are proposing? No.  But when you put it all together... it is kinda of revolutionary.  For me the breathing exercises do help alot.  Its just hard for me to sit still and do them.  They finally have me exercising almost every day.  Some how yet I have to learn to moderate my work load and keep stress under raps.  Each day I schedule myself so that I fit all the important things in, including meals and relaxation.

I thoroughly loved the education.  In order for me to really change my evil ways I need to understand why I SHOULD change.  I enjoyed learning how the path to addiction works.  I loved learning what all these meds, drugs and alcohol do in the brain and how they affect the body.  I learned why I couldnt handle anymore stress.  The pain load alone brought me high up on my personal anxiety threshold, then any little upset in my work load or family life threw me over the top and I wasnt able to handle any stress.  Knowledge it turns out, really is power.

Why does the program have to be 3.5 weeks or longer? It takes that long to see the results of deep breathing and regular exercise.  It runs from 8am - 4:45p each day to prove that a person can do a full work day and live to tell about it.

In the group I was in, almost everyone was on disability.  Some relied on canes and left the program, walking with out them.  I saw people in wheel chairs move to walkers.  I dont know, I was impressed at the power of sleep, exercise and oxygen.  Who knew?!

I am not on disability.  My way of coping with chronic pain was to do more and more and more to try to drown out the pain.  Guess what? That doesnt work either.  So now I'm working on moderation.  Balance. I'm happy to say, I hired an office assistant 6 weeks before I left.  This may be the best thing I've ever done for my pain.
It can be frustrating and a challenge to scale back.  Its a work in progress.

Let it be known ; The PRC is good.  Run by good people.  If you have been asked to go, go.  About 600 people go a year out of hundreds of thousands of chronic pain sufferers in the USA.  You should count yourself as lucky to get in.  Apply yourself whole heartily. What do you have to loose?
The pain.

Sunday, September 21, 2014

Coming to grips with Chronic Eye pain and Headaches

I felt moved to write this after reading post after post of person after person who has this same trochlea pain and subsequent attacks like I do, coupled with daily Migraines.
 I started a 'support group'.  I set out to not 'be alone' with this supposed rare condition.  Well, I found, to date, over 40 different people globally who have been officially diagnosed with Trochleitis or have self diagnosised it.

We are all in different growth phases of dealing with the pain.  The random attacks.  Trying to figure out a pattern only to learn we can't figure it out.
I am 'lucky' I guess,  I have doctors who stay in the trenches with me.  I know I have a small handful of doctors who will 'hear me out' and work with me.  They believe me!  Most others with this same pain dont have any doctors who will even try to help them.  I am fortunate in this way.

The five stages of Grieving are at play here.
1) Denial with isolation, is the first phase. "It will go away".

2) Anger;  We've all been here.  I would add Jeaoulsy to this also, Jealous of others who seem to have perfect health.  Many think 'why did I get this?"  "why ME"

3) Bargining:  ( I took this from )
"The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–
  • If only we had sought medical attention sooner…
  • If only we got a second opinion from another doctor…
Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality."

The support group is good in that we now know to we can really stop searching for that ONE doctor who will be the genius and figure out the right recipe or see the root cause of this trochlea pain.  We are all in the same boat together. Most of our doctors are saying basically the same thing.  "we dont know, but lets try this or that"  
In this way we have helped eachother alot.  Triptans usually are need grouped with NSAIDS to help us on our horrible days.   NSAIDS help on the average pain days.  Steroid shots into the trochlea help the most. Especially with Kenalog vs. Decadron we're finding.

We learn from eachother and we know where we can go for understanding.  We all go through these phases of Grief.  After all, we lost something very valuable.  The pain free person we used to be.  We miss that person terribly most days.  When we dwell on this too much we slip into #4.

4) Depression:  Dispair.  Hopelessness.  We're going to be in pain like this for the rest of our lives possibly.  This is a horrible feeling.  But it is normal.  For me, I visit this in small spurts.  I think when you have a chronic condition of any kind you can slip in and out of these five stages at any time.  Its like the 'old you died' and yet you're still a live.  Its a very confusing place to be.
Mostly I dont like the person I am to my friends and family when I allow my self to stay here long.

But then we all know what stage 5 is....

5) Acceptance: This is the goal. Its a long hard road to get here, however, keeping this goal and step in mind while going through all  the other steps, I think, is invaluable!   
Once you come to grips with this is not going to go away.  Then You focus on 'how do I live now?"  This is my new normal.  The anger step will say "I DONT WANT IT TO BE MY NORMAL!"  But at some point, you come to grips with , 'now I have to live'  No more searching for solutions, no more playing the 'what if' game.  No more 'catastrophizing' the pain.  ( Imagining how bad it can get) 
For me, journaling my thoughts and feelings daily helps.  However, I rarely go back and read what I wrote.  I leave it all there on in my journal and I dont 'carry' that with me in my head. 

Finding a good counslor to help you move forward helps!  Mine, presently has me reading a book on being 'balanced' .  Also, she has me writing down 5 things every day I am grateful for.  This has been a good exercise.  It makes me search through my pain days and find something I honestly feel grateful for.  Even if it is something simple like "I'm grateful for this chocolate cake!"  :)  On days I really cant find five things, I settle for 3 things.  3 is better than none.

I made a pack with myself to not say 'NO' to invitations to do things with others.  To not isolate myself.
Staying distracted helps the most.  Music destracts me, funny movies, ( What about Bob? is my go to movie when I'm depressed.  Fawlty Towers is my go to show when I'm in anger mode, "Sherlock is my ultimate distraction) 
My job is medicine to me.  I've had to alter my hours so I can rest more, but I wont give it up as it serves as true pain meds.  I'm an esthetician at a spa and it helps me to relax when I help others to relax.  I love people and try to stay absorbed in their issues and trials.  Surrounding myself with others helps me to realize , 'hey! I think we all have some burden we must bear"  Personally, I have concluded the death of a child is the worst, and social/ emotional pain and  problems in the family are far worse than physical pain.  Although, I have my days where I feel 'woe, is me'

This pain experience has helped me draw closer to my creator. 
 I have experienced first hand the truth of 
                   Isaiah 40:29 
29  He gives power to the tired oneAnd full might to those lacking strength.*+30  Boys will tire out and grow weary,And young men will stumble and fall,31  But those hoping in Jehovah will regain power.They will soar on wings like eagles.+They will run and not grow weary;They will walk and not tire out.”+

I wish all of you who suffer ... Acceptance.  There is much peace in finding acceptance.  You can have your days of anger, depression, bargaining etc. But hopefully most days you spend in 'acceptance' Sincerely, Greta

Sunday, March 2, 2014

Defining "Rebound " Headaches

A few of my fellow 'Trochlear Migraine' buddies have asked me to put on the blog how I define what a rebound headache is... So here goes.

After reading "Heal Your Headache" by David Buchholz, MD I finally understood what was meant by a re bound headache.  But I still didn't think I was having trouble with that.

Our neurologists tell us we are only allowed 2 days a week of pain meds.  This is not comprehensible if you suffer from chronic almost daily headaches/migraines.  What do you mean I can't take SOMETHING when I have a headache?!  

I was at a point of taking 100mg of Indocin daily with a narcotic for the really bad days. It was no longer working... That's when my neurologist explained it to me best. 

Dr. Bucholz explains that when you take a pain reliever, the pain receptors in the brain are 'bound' with the medicine, and the pain receptors are quieted... but after the pain receptors have been trained to expect the pain med to bind them, the now will sort of SWELL looking for the pain medicine when it wears off.  They want to be 'rebound' with the medicine.  They stay LOUD and searching searching, searching, looking to be bound with pain medicine. 

Then my neurologist explained the next step. She told me what I have is a 'monster of a problem'.  Daily Headaches.  But after a while it becomes a Tyrannosaurus Rex and you just can't feed it enough pain meds to keep it happy.  Soon you land where I was at... Nothing is working....NOTHING! 

I was devastated, but I knew she was right.  I had to stop my daily pain meds.  Ibuprofen, tylenol all of it.  I cried all the 3 hours home mostly because I knew she was right.  I was scared.  I had to loose what I thought was my safety net.

I am happy to report however, after making it through the rebound stage, ( two days)  I wasn't any worse off than I was before and maybe a little better.  My stomach was the happiest as all the years of meds had chewed holes in my stomach.  

Best part is that when I did take pain meds.  They actually stopped the pain, and I got a two day break, enough to build up strength to face the pain once again.

Fun fact?  According the to infamous HoneyChuck... you can have meds round the clock if you need on those two days. Its not the amount you take its the length, it can't be longer than two days or else you train the pain receptors all over to expect the pain meds.

You could discuss maybe trying a prednisone taper while getting off your pain meds. 

Now... my next adventure should be caffeine headaches... I'm just not ready to give up my Jo though.