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 Psychcentral.com )
"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

Tuesday, November 26, 2013

The difference between Ophthalmologist and Optometrist's



Recently I went with one of my dearest friends as she took her 6 year old to the optometrist who also specialized in Vision therapy. Another dear friend referred her to this optometrist .  I'm interested in the subject immensely of course,  so she allowed me to go along.

If I hadn't been through so much with my own eyes, I would have never batted an eye at this subject. This optometrist was excellent....But I knew... She is still not a medical doctor.

The optometrist was very kind and very seemingly very smart.
The clinic had all sorts of high tech equipment.
We were in a smaller town in central MN.  I am used to going to the Mayo Clinic in Rochester and this little clinic had equipment that appeared to be of higher tech than the revered Mayo...

This appointment was very important as my little friend Lane, seems to be struggling to learn sometimes in school.  We wanted to make sure his eyes were not contributing to his struggles.  Turns out, yes! He needs a new prescription.  He favors one eye affecting his depth perception etc.  but as I looked at the perscription I found it odd that the child needed equal prisms in each eye and now bifocals at age 6.  I was a little worried about how hard it might be for a child to adjust to bifocals when it is sometimes quite difficult for adults to adjust to them.  I was worried he'd be just frustrated and take the glasses off altogether.

Optometrist, as I understand it, have not gone to medical school. They go to four years of optometry school.
Ophthalmologist, have gone to 8 years of medical school. And some have gone on to 2-3 years of subspecialty training.

Optometrist, specialize in eye exams, vision changes, managing already diagnosed eye issues and they can refer you to an ophthalmologist.
Ophthalmologist, specialize in comprehensive eye health, they can see the 'larger picture' of overall health, in regards to cause and effect and treatment options of various issues.  After an issue has been diagnosed, and optometrist can be quite capable of monitoring a condition.

I like to think of it as the optometrist is the ophthalmologist right hand man in caring for patients.

Apparently, this is a hotly debated item in eye world, especially in the USA.

As far as the fancy equipment.... well, come to find out.  Sometimes the best equipment is the doctors knowledge.  Sometimes simply doing something like dilating the eye is much more accurate than snapping a picture of the back of the eye.  Although, I'd like to add the machine is more comfortable.    That being said.  Nothing can out shine the human brain.

We followed up with a second opinion to the local Pediatric Ophthalmologist specializing in Strabismsus in our own town to learn that Lane's eyes were actually good! Very Good. He had better convergence than most his age. He just had a small stigmatism .  He did not need vision therapy and really could see good with out his glasses.  When all was said and done. Lane's eyes were not the cause of his class room issues.  It was more behavioral.  Can you imagine if we had gone down the road of prisms and bifocals?
Turns out Lane's mom had a hunch his eyes were working fine together ( converging well) He is excellent at sports.  Never misses a ball.  So how could his depth perception be that far off?
In this case the Optometrist was way far off.  We're so glad we got a second opinion before proceeding to put Lane through even greater frustration with learning.

 Please take the time to read the link noted here.
It makes a difference.  If you get well intended, but incorrect eye care, especially at 6 years old.  It will affect your whole life.

Do your home work... See the right Doctor at the right time! If you're 6, it could mean your future.

Friday, January 25, 2013

Punctal Plugs

Yesterday, I went to see my local eye doctor to see what we could do about how dry my eyes have progressively become.
They didn't seem too dry of course on the day I actually go to the doctor. But yes, indeed, they were so dry ( especially my right eye which has had more trouble) my normally 20/15 vision they now rated 20/25 which still is good, but I was alarmed as I truly couldn't make out one letter with my right eye on the exam.
After examining my eyes thoroughly, my doctor recommended temporary punctal plugs to be inserted in my lower tear ducts. This is to keep the fluids on my eye from quickly draining off,  ( and yes, I can still cry- my coworkers were wondering this today)
They simply putting some lovely numbing drops in your eyes, (that felt a bit like isopropyl alcohol) so I wouldn't be uncomfortable at all.
I simply had to look up to the ceiling as she used what I imagined were very precise instruments to insert this tiny little plugs deep into my tear ducts.  I felt the pressure etc. of what she was doing.  It really was no big deal.  However, I've had many eye procedures this was again, not a big deal.

However, I am happy to report that already this morning I can tell a nice difference.  It didn't hurt to blink and my eye lids didn't stick to my eye ball.  Must say, it was much nicer to wake up like that!

You can't see the temporary plugs at all in my case. She chose the temporary punctal plug because it had a greater chance of staying in for the full 4-6 months.  I agreed to this as I did have a permanent plug put in some time ago that popped out after 3 weeks.  The doctor figured I itched it out of my eye during allergy season.  See, the permanent punctal plugs have the tiniest little white dot that sits just above the tear duct. I must have worked that plug right out of my eye with my allergy to ragweed that summer.

Anyway, I'm very excited to find a bit of relief from these dry, burning, blurry eyes.

Also, it was lots of fun to hear how excited this doctor was when reviewing my strab. measurements.  She just couldn't get over what a difference I am now compared to before surgery.  It really is a miracle!

Friday, April 6, 2012

Tables turn

Quite interesting to accompany a friend as she went and had surgery with the same doctor I had down at the Mayo Clinc in Rochester this past week.
Very nice, I must say to NOT be the patient!  My friend did great.  But the doctor did even better.  He hit a home run! Amazing!  He put an adjustable suture, on EACH eye. But when he went to adjust them about 5 or 6 hrs later, they were pretty much 'spot on' , no double!  So he just had to tie the sutures off and clip them.  Amazing!
Immediate success!  Very cool to see such results!
Also, Very interesting to see them do the adjustable sutures after having had them done to myself 4 different times.  I concluded after seeing it all, it's not so much the act of surgery that is amazing, it is all about getting the math correct and knowing where to land those crazy muscles on the eye ball in the first place.  As the surgeon said, " the adjustable suture gives you the ability to be as aggressive as you need to be" meaning  a surgeon can fine tune and get it exactly right all because when the patient is awake they, by way of feed back and tests the dr does while adjusting the sutures, can make sure the muscles are exactly where they need to be.
I crudely would compare it to adjusting your headlights in your car... You would put your new headlights in, then sit in the drivers seat and see if it's correct, get out adjust them if need be etc.
Very educational this week was.
I'm gaining even greater appreciation for this science.  So fun to watch someone do this, plus, all the while he was teaching others the whole time.  That was pretty neat too...  So interesting to come this full circle and now be able to see someone else go through it.  Another eye miracle -- Poof!
gw