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Tuesday, June 23, 2015

Hello, Mr Mac.

20150623_140641
It was a long, long visit.

With many tests.

And there I was with my busy bag in tow, ready to spend my good waiting hours just stitching away ---and the VERY first thing they did was put me in a chair, tilt my head back, and put dilating drops in my eyes.

Now how is a girl supposed to occupy hours of time waiting if she can’t see to stitch a thing?

I am reminded of how much I hated having my eyes dilated when I was young!

My exam covered nearly every test in the book at every machine possible, or so it seems.

But the one that about did me in, not for the test itself, but for the reaction I got, was the injection of dye into a vein in my hand so they could take a video of where the dye goes.  All of those little veins and tiny capillaries, caught in still photos, and in a video that I could watch with the doctor later as he gave me my diagnosis.

Only –within minutes of the injection I was itchy all over…my arm pits, the back of my neck, my belly, behind my knees…crawling.

I am allergic to the dye!  This never happened to me before.

Benedryl to the rescue.

 I have Macular Telangiectasia, Type 2.


The name of this thing is so long they have abbreviated it to Mac Tel 2.

At least I am not type 1 or 3.

The words that were lost on me first were Metamorphopsia or Scotoma:

scotoma
/sco·to·ma/ (sko-to´mah) pl. scoto´mata
1. an area of depressed vision in the visual field, surrounded by an area of less depressed or of normal vision.

metamorphopsia
[met′əmôrfop′sē·ə]Etymology: Gk, meta + morphe, form, opsis, sight
1. a defect in vision in which objects are seen as distorted in shape, which results from disease of the retina or imperfection of the media.
 
For me it all happens in my reading field.  Everything else is normal, but for the past few years I have had trouble with things like reading white text on a dark colored background.  I went ape when my old iPhone changed from black text in light blue bubbles – to white text in bright green or dark blue bubbles – I couldn’t read the text.  I was livid, but I didn’t know that this was really a symptom of what was going on with my eyes.  I thought it was just because I was reaching the age of “old eyes.”
 
Prognosis:  According to the Mac Tel Project, 50% of type 2 patients with have a visual acuity of 20/32 or better, with a mean visual acuity of 20/40. Mac Tel can rarely lead to 20/200 or worse vision when associated with full-thickness macular hole or subretinal neaovascularization that can lead to a disciform scar in very advanced stages.
 
Eye Chart II Art Print
 
Take care of our eyes!  We need them!
 
It’s a lot of med-speak, but you can learn more HERE.
 
This was my baseline appointment, and I go back in 6 months to see if there has been any change.
 
There is no cure, there is no known cause.  It’s a big unknown.
 
But I am happy that the prognosis states that my vision shouldn’t get much worse, I may have reached as bad as it will get already.
 
I could live with that. If things stay the way they are – I can live with that.  I already am.
 
I took a 3 hours nap thanks to the benedryl and am now packing up my stuff for Vermont in the morning..
 
VQF, Here I come!


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44 comments:

Judith Gale said...

Eye issues are scary. We need to see! Glad you are being followed to ensure it doesn't get worse. Can't wait to meet you in Vermont on Sunday. Love your work.

elively said...

Good luck with your vision issues! I know with your positive attitude and the support of your family and many friends you will do well! You are such an encourager to all of us, now it is our turn to do the same for you. Getting older isn't for sissies and I can testify to that, being at least 20 years ahead of you!

Enjoy your trip to Vermont! I wish I could be there as well. It is a great place.

Ellie Lively

Janet O. said...

Glad it isn't worse, Bonnie! You need your vision!
The dye reaction was not pleasant, I'm sure. Benadryl knocks me out, too, but when I have a severe allergic reaction, I am grateful for it, as I bet you were.

kris webb said...

Thank you for teaching us beyond quilting. The more we share with one another, the better all our lives are. Good for you, Bonnie Hunter!

Colleen Yarnell said...

You are a strong person and will adapt as needed. I'm amazed at what strong people can do with bad eyesight. My dad is a total mr fixit and creates in wood and metal despite being legally blind for most of his adult life until eye surgery a decade ago. I will keep you in mprayers.

Mary Ellen said...

My thoughts are with you today as you take in this new diagnosis.

sm smith said...

So sorry to hear about your diagnosis! Hopefully it won't get any worse. Hang in there and have a wonderful time in Vermont. Prayers for better vision!

Marietta V Gartner said...

Dearest Bonnie- what a challenge you have been given, and you sound so positive still. I wish you all the best in years to come. Our vision is so important- to continue doing the things we love for others. Keep up the positive thoughts, and we will keep you in our prayers ...*hugs*..

Pat Salsburg said...

Glad that it's all okay and will be happy to see you Friday in class !!!!

Donna1111 said...

I am sure you are anxious but hopefully things are stable and will not change in 6 months. SOOOO looking forward to seeing you at VQF!

janequiltsslowly said...

I agree with the comments above; its good to know what this is and now you can start absorbing it and figuring out with your doc if its stable or going to get worse. You do exactly what I would do; look everything up and read to understand what is going on. So glad that you didn't have a worse reaction to the dye. Wish they could do a scratch test for that kind of stuff before injecting it into us! Enjoy Vermont! I bet its beautiful this time of year.

Sheila Otte said...

Prayers as you absorb this latest diagnosis and how it will impact your life. Love your positive attitude. Thanks for sharing!sheilaotte@att.net

Eileen Schamel said...

You can expect to have the dye thing once a year and they compare. I have been doing this for at least 10 years when the optometrist sent me to the specialist for Mac degeneration. Have not had to much change in that time except after having the last cataract removed and I can see very good without glasses but need strong readers for reading. I haven't heard of your condition so good luck. Any cataracts? when they become ripe definitely get them out.Safe travels to Vermont.

Nikki said...

Healing thoughts and good wishes being sent your way. Our health is so important...and when you start to lose it...you realize what is really important. Many blessings being sent your way.

grammajudyb said...

Safe travels and take care. Get some extra rest if possible this weekend. That dose of Benedryl may have a bit of a lasting effect. I usually feel "doppy" for a day or two. :)

Marsha Ransom said...

Happy for you that it isn't something worse. I, too, deal with vision issues, and have been noticing some new issues. I know I use my eyes almost endlessly every waking moment, between home, work on a computer at my paid job, more computer time or reading or sewing or crocheting or quilting and did I mention that I now have computer glasses as well as progressive lenses for other stuff? And that I often sew with my glasses off as I can see better? My new dental hygienist had these binocular thingies on her glasses, I wonder if they would help me? Good luck with your vision issues.

Lisa said...

Oh Bonnie,
I too am allergic to X-ray contrast. You need to be careful get a medic alert bracelet or have it noted on all your medical files. Itchiness is a PITA but anaphylaxis can cause death. Your reaction next time may be the same but repeated exposure could lead to an anaphylactic reaction. Not trying to scare you as you have already had a "full" day of medical jargon. But as a registered nurse and a person who is severely allergic to x-ray contrast I just wanted to let you know, just in case your doctor did not already tell you.
Get some rest you sound like you are in for a full weekend ahead. Take care and enjoy the show.

Mary said...

Prayers always going your way Bonnie, hang in there. 💚

MaryBeth said...

Hi Bonnie, sorry you're having such issues. I'm also a registered nurse who works in diagnostic imaging and would like to say a bit more about your reaction to the IV contrast. If indeed they need to repeat the contrast again, or you need it for any other type of test (CT scan, MRI, etc) you probably need to be pre-medicated 24 hours in advance to avoid an anaphalactic reaction. Please talk to your doctor about this -- the quilting world needs you (not mention your family and friends).

Donna said...

So sorry to hear about your reaction to the dye, I know how uncomfortable that can be. While I am sure the diagnosis is upsetting, the fact that it is type 2 is encouraging. Prayers going up for you and for your eyesight to remain stable. Hugs.

sandra said...

I am so sorry Bonnie vision is so precious and especially for quilters but I will pray that it will not get worse. My son-in-law I legally blind but does quite well with things, my daughter has loss some her vision through having diabetes since she was ten and their little guy who was born blind is the sunshine in my life. So I can relate to what loss of vision entails. Blessings Sandra

Anonymous said...

Ditto on the allergy advice given. Make sure ALL your docs know, and also your family members. Then see about getting a Medic Alert tag, or at least keeping this allergy info with you somehow at all times. I've been down that dangerous allergy road, and have shocked doctors more than once with my "one in a million" reactions to different things. First person to ever have a reaction during a bone scan at one hosp. -- that's the kind of history you don't need to make! So leery of anything injected now...

jane nj/wi said...

Only one add-on to medic alert. If you have an IPhone you can put all this right there so any EMT or medical anyone can see your background

Now to my version of Bonnie Hunter. We had met on Internet and you lived in another state, another work identity Snd you were a quilter. You started do limited speaking engagements which consisted of a trunk show of your quilts.....and how scraps were the magic to enlivening a quilt. Radical. I finally got to see you at Brownsyine Quilters and my guild Garden State Quilters listened to reason and brought you in.

My version of Bonnie Hunter is someone who I still admire for her zest for life and quilting. Now I need to get an infusion of your nonstop quilting ethnic. A quilt grabs you and you don't just go along for the ride you change the directions. Eyes.....viewing aid to the world....hahaha never get those expressions right. I think a Third Eye quilt is next on the design wall....with all those itty bitty scraps saying "use me too". My fabric talks to me as well. Scrapologist.....PHD in scrap applications.....

Jane now from WI/FL

Anonymous said...

Bonnie, I'm so sorry you have had such a tough diagnosis - but now you know what you are dealing with. I hope that is a little relief. Word of warning - I had the same reaction to the dye injection - if there was iodine in there it is possible that you reacted to the iodine rather than the dye - be very wary of eating seafood until you are absolutely sure you are not now allergic to shellfish. I had always been a glutton for shellfish until I had the injection - now can't touch it. Also I was warned never to have the injection again because the second reaction will be more severe and is known to kill. Sorry to be the harbinger of gloom - I just wish someone had told me rather than me having to find out the hard way.

Back to happier things - thank you for being such an inspiration! X

Donna Endresen said...

OH, Bonnie- I am so sorry, but am glad you at least do not have regular Macular Degeneration. I hope your vision does not get worse, also. What are your symptoms? I have not had a chance to keep up on the posts the last couple of weeks.

God Bless you for being so upbeat about it. I hope you can continue to do your quilting without a problem. That is something that bothers me, also. My prayers will be with you!

Donna
Soldotna, AK

Julie Vernon said...

Bonnie - you much have felt like you were hit with a brick on the head! Thankfully, the doctor explained it to you, and you will SEE.

Bonnie, in the most sincere way I can say it... you are in my prayers. A line in our family (John and one daughter in my immediate family) have a congenital eye defect they live with and have done well. It is no small thing.

Bless and Keep you in The Lord care and love
HUGS JUlieinTN

Patricia said...

Prayers for you. I love your attitude, you are a inspiration in my quilting adventure and life.

Louisa Enright said...

Go gently. Lots of good energy coming your way from all who love you and your work. It's good to know what the problem is and I'm so relieved that it is something with which you can manage. Big big hugs! Louisa

Judy Currie said...

Love & hugs to you .Take good care . You are such a positive person . I do love following along on your adventures in quilting.
Judy from Ontario ,Canada

badputts said...

Bonnie,
I'm so sorry to hear about your eyes, but thankful it is Type 2! You amaze me daily with your outlook on life, your energy and your talent! I love keeping up with you in your blog only as I would never keep up with you physically..... You are the energizer bunny! Take care of yourself and keep those blogs coming!!
Badputts@aol.com

Deanna W said...

I had an eye issue a few years ago and had lots of tests including the dye one. It is amazing what they can do and see with these tests. Glad to hear you got a good diagnosis..well as good as it gets. Yes we need our eyes. That is my one fear losing my eyes or hands...whatever would I do?!?! Keep up the positive attitude you have and it will take places...see you are going to Vermont!! hahaha

Deborah said...

So sorry to hear about your eye diagnosis. In the last two years I have had a rare virus and a rare thyroid cancer. Fortunately I survived the virus and the thyroid cancer is cured. I have learned to enjoy each day as it comes. You have a great attitude and you are such a blessing to all of us. My prayers are with you. Thanks for all that you do and your willingness to share.

Melinda McMahan said...

Saw this today and thought of you. It is good to be informed so you can make the best decisions in regard to treatment, etc. but don't let it consume you...most of the things we worry about turn out okay in the long run.

https://www.facebook.com/mindfulschools/photos/a.203073253066340.49931.165948186778847/598713920168936/?type=1

Have a great day!

AJ (The Quilting Pot Podcast) said...

Now that you know what you are faced with, you can deal with it head on. I hope that the visual acuity you have remains unchanged. Prayers for you. Keep moving and keep quilting.

Jacqueline said...

Sorry to hear this. I wish you well.

Samplings from Spring Creek said...

Eye challenges--I can so relate! Last year I had two surgeries for detached retina. Thankfully, the surgeries went well and I have vision. Scary. Sending positive thoughts your way. Am told advances are being made every day

Sharyn Mallow Woerz said...

So glad the bad news was good, so to speak. I have much to say but suspect you've been media bombed with everyone else saying it.
You know what struck me this morning (or was it yesterday already) when reading the linked info, was Susan Komen's sister. Breast cancer was just one more thing no one talked about until her sister took up the fight.

You are in a unique place in your life to also take up a cause, if you cared to. I suspect our ribbon would be scrappy...
I wish you all the very best outcome and so glad it isn't black, no pun intended.
Sharyn in Kalama

Shirley in Canada said...

so very thankful that the news was not any worse than what you already know. Wishing you a very safe trip!

Nancy A: rangerer@sbcglobal.net said...

Until someone has that kind of itching, they can not imagine what it is like. I have had it happen once and hope it never happens again. Glad they were able to give you some hope about your eyes. Eyes are very precious things.

Dody said...

Prayers sent your sent your way Bonnie. I'm so glad it wasn't anything worse.

Craft Mad said...

Thank goodness you are a 2. Keep in mind, you are number 1 to all who follow your blog!!!!!!!!!!!
I am lucky to have big pupils, that they can see without the drops! I have only had the drops a few times and they are awful!
Just remember your I pod for next time. Meran xx

Margie @suddenlink.net said...

So glad you are a 2- and thanks for letting us know- as you are aware how much we are praying for your wonderful vision in the quilt world! And maybe get a tat to warn the next docs about your allergy!! [Just kidding of course]

Angeliasue said...

That's a good report, Bonnie!

NCGrammyJean said...

Bonnie, Aging eyes are so disheartening. I am sure the last few years have concerned and frustrated you and yet, who would ever have guessed! You always have a smile on your face and are always on the go- you are a magical person and I am glad to know that the odds favor decent vision for your future. I too have had a few years of eye aggravation and yet have been surprised at how well my hands seem to "see" and remember how to thread a needle. I have now had 2 operations and after the eyes settle down, I will get new glasses and be able to see well again. I too, am grateful for my vision and for all the beautiful quilts I have been lucky to see in my life.
Good Luck, Jean Williams
sewhope50@yahoo.com