"Buttons and patches and the cold wind blowing,
The days pass quickly when I am sewing"
~Author Unknown

Wednesday, August 31, 2011

When things happen.....

Sometimes life brings things into your path that turn life a bit upsidedown. This summer has brought something to my path that I could never have expected. I have been diagnosed with a rare and incurable eye disease called Graves orbitopathy. After having become very ill weeks after radioactive therapy for my thyroid, I was diagnosed with Hashimoto's disease. It is so rare that only 1% of the patients develop thyroid eye disease.

I had been having severe eye pain for some time now and finally talked with my regular doctor about it in the summer. I had thought it was from my Fibromyalgia. She said she did not think it had anything to do with this condition and told me to be sure to tell my endocrinologist as I was due for my next check up. I had a new doctor temporarily who immediately suspected it was Graves. The eye specialist has now confirmed it this week.

The coming 3 to 8 months will be critical while the disease is active. He says there is nothing they can do until it runs its course. Only then will I know how much damage my eyes will have. They are keeping track of changes in my eyes and I will have a CAT scan done in October to see how much growth is taking place to the tissue around the inside of my eyes. All I can do is wait now.

I have days that I am not able to do much of anything with needle and thread but they are not constant thankfully. I do have trouble focusing but am learning to be patient with my eyes. There is a hazy spot now that I cannot seem to get rid of even using fake tears to keep my eye moist. I have a great deal of hope in me that the problems I am left with will be minimal once the active phase is passed.

You see...for me eyesight is something I have always been grateful for as I adore working with fine linen. I do hope that if I am not longer able to work on this linen that I will however be able to work with a larger count to continue my passion. But I know there are reasons for everything we encounter in life and I am more thankful than ever for all the wonderful things I have been able to make. They are taking on a whole new light to me at this moment. I am finding that each stitch I stitch or quilt is special and much more fulfilling if that is even possible. I do so love doing my needlework!

I am working away at my latest cat sampler and as you can see...Chester is now Dagi as I once again changed the colors. Dagi sat on my lap last evening as I worked it and I think he is pleased. We have hung all the frames I have up to now for my sampler wall. As soon as I finish this one and put it in its frame, I will share the wall with you...soon...very soon.

This is a long blog entry but bare with me for one more little item...

I showed you my new poncho in my last post which is keeping me warm in our cool summer weather. Now I found this video from Smithsonian Folkways which I just had to share. The song is so sweet and cannot help but make you smile but be sure to pay attention to the granny stripe and granny square ponchos. Love them!


I hope you enjoy each moment you can spend each day with needle and thread!!!

46 comments:

Carolien said...

O dear Heidi,

How sad that your eyes problems are the feared disease indeed. I so wish it would be otherwise ...

Big and warm hugs & I pray the effects of the coming months will be as minimal as possible!!!

Groetjes, Carolien

ria vogelzang said...

That's just terrible. I really hope the active phase will soon be over and leaves no big problems behind.....
I'll be praying for you!
Love and a big hug, Ria.

Hazel said...

I will keep you in prayer Heidi that the damage is not severe. You are showing amazing courage! I love that song. Love, love love it. Thanks for sharing. xx

Elizabethd said...

Dear Heidi, I'm so sorry that your eyes are having this problem. I know how much of your creative life is given to your stitching, and I will pray, like others, that the effects will be minimal and that you will continue to sew.

anneke said...

I'm sorry to read about the eye-problems! I hope it will turn out to be minimal damage, but it's frightening, painful and unexpected.

Hugs
Anneke

Entre puntadas e hilos said...

This is the nightmare of a stitcher. I am so sorry to read about it and I can only hope the damage is the least possible.

All the best for you

Vickie Niggemann said...

Dear Heidi, I have prayed for you. You are courageous. I love your cat samplers.

Jackie said...

Heidi, I'm hoping that you have minimal pain as this disease runs it's course and that any damage is minimal. xoxo

Gillie said...

I was so sorry to read this news but am so hoping that the damage is minimal and that you will be able to continue stitching.

Barbara J said...

Oh my ... why is all this happening? Eye problems are really frightening. More so for a stitcher.

I hope the problems will go away in time and you'll be good as new!

Penny said...

What sad news. I was recently diagnosed with Hashimoto's. You have amazing courage and such a positive attitude towards the situation. You are a huge encouragement to me! I pray that the damage will be minimal,and that this time will pass quickly. Sending love and hugs to you.

Deborah said...

Heidi, I pray that the disease runs it course quickly and that you are left with minimal effect. Know that you are in my thoughts and prayers. Deborah

Teresa said...

We will pray damage is minimal.
Love the new little kitty you are stitching.
Teresa's Heartfelt Stitches

Dalia said...

I am so sorry for you.
You are in my thoughts and my prayers.

Heel veel moed en sterkte, Dalia

Stitchin' Sweet Sue said...

Heidi, wishing you a healthy future. I feel your sadness and thank you for the honor of sharing what is surely a very difficult time. Hope your vision issues prove to be minor and only temporary, plz stay in touch...

Catherine said...

I am so sorry to read this news..I will keep you in my thoughts and prayers.

Jantine said...

O Heidi, dat is niet niks, ik word er helemaal stil van. Sterkte met alles en laten we hopen en bidden dat het mee zal vallen wat er achter blijft! (sorry, dit soort reacties lukken niet zo goed in het engels...)

Pondside said...

I am sorry to read about this latest challenge, Heidi. I'll pray that this active phase doesn't last too long or leave too much damage. Your spirit will carry you through this, but please know that the thoughts and prayers of friends are also winging their way to you.

Jeanne said...

Oh Heidi I am so sorry to read this and keeping you in my prayers for a recovery. You've already had to deal with so much healthwise and now this. I am always scared about my eyesight too as our needlework passion is so important to us. Sending you hugs and strength to deal with this.

Maggie said...

Heidi i'm so sorry that you are experiencing these problems. I wish you well and hope that the damage will not be too severe and that you will be able to continue with your needle projects.

Take care x

Willy said...

Dat is schrikken Heidi, wat een naar iets. Hoop dat de blijvende schade meevalt. Wens je heel veel sterkte.
Lieve groet.

Saskia said...

Like I told you in my email, I will keep on burning candles and wish and pray that the active phase will be short. And the damage will be minor.
Knuffels

Marsha said...

I will hold you in my prayers Heidi. I have a friend here that is dealing with a rare glaucoma. So stressful for needle workers to deal with and worry about.

I like your new poncho. Looks just right for cool weather. I enjoyed the 'little bird' song.

DebbieSFL said...

You are in my prayers

Mad about Craft said...

This is the worst kind of news for us stitchers. I'll pray that you get away with minimal damage.

Take care!

Linda said...

I've never heard of Graves affecting the eyes. I'll be praying for you. Just keep up your faith that you will be ok. I missed that poncho, that is really cute. Take care. Linda

Jenny said...

My Dear Friend,
I am so very sorry that your eye problems are Graves disease. You have been on my mind so much this past week and I have found myself praying for you. I will continue to pray that the effects from this disease are minimal, you are such a brave and positive woman who has many gifts and abilities, and I so appreciate your friendship. Your sampler is beautiful as always and it makes me appreciate your work all the more. Here is a hug from CA. I so wish I lived closer so we could share a cup of tea and a good chat. I will continue to keep you in my thoughts and prayers.
Love, Jenny

Margaret said...

Dear Heidi,
I'm so very sorry to hear about your eye disease. You are truly being plagued by one thing after another. Thank goodness you are a born optimist. Take care and I hope that the damage will be kept to a minimum.

Love your new Dagi sampler.

groetjes van Margaret

DonnaTN said...

Oh dear! I'm so sorry to read about your eye problems. I will certainly pray that this doesn't affect you too much. You have had more than your share of health issues, but you maintain such a great attitude. We often can't control our situations, but we can control how we react to them. I'm sending you a cyber hug!

Rhonda said...

Oh Heidi, I will keep you in prayer about your eyes! I hope any damage will be minimal, and you'll be able to continue to enjoy your needle work. Big hug, and hang in there!

Ginny said...

Never having been good at coming up with the right words to say, I'll simply say that I am so sorry to hear this news. You will be in my prayers as this disease runs its course. I've watched my husband deal with medical problem upon medical problem, but his spirit has not been broken, and I pray it will be the same for you. You have such a wonderful spirit, and I've no doubt that you will adapt to whatever challenges you are faced with. {{{HUGS}}}

Christine said...

Oh dear Heidi, I hope the damage to your eyes will be minimal

Heidi said...

Oh Heidi, my heart just sank when I read your news. Sight is so precious to those who work with their hands. I'm sending you positive thoughts and energy, and hope this disease will take a speedy course and leave little damage behind. Thank you for sharing the song - it was so sweet!

hugs,
heidi

lillianscupboard said...

I'm so sorry to hear of your eye problems and pray that everything will turn out well for you. Your work is so beautiful.

Nancy said...

I want to keep my head in the sand and just hope it all goes away. God would never take away your needlework and reading hobbies. Have faith and start praying a lot.
Love you, Mom

mainely stitching said...

Oh Heidi! I just don't know what to say, other than the possible loss of eyesight must be the greatest fear that all of us who work with needle and thread can imagine. You are such an amazing woman. If you want to talk or email or anything, please don't hesitate to contact me. I'm here! I'll be here with all my fingers and toes crossed that you'll come out the other side of this with everything still working fine. Lots of love to you and strong thoughts.

Sonja said...

Lieve Heidi, wat erg dat deze diagnose is gesteld. Ik kan het gewoon niet bevatten. Ik hoop toch zo dat het snel mag stoppen en dat je ogen niet te veel schade lijden.

onlymehere said...

Oh Heidi, I'm so sorry and will keep you in my prayers. I hope that your eyes will suffer very little damage (actually I'll pray for no damage but I got the impression from your post that there would be some). Hopefully it will run it's course fast.

You do such beautiful needlework and this sampler is coming along so nicely.

Sorry, I haven't been around too much but I want to thank you for voting for the girls. When I posted that I had no idea the contest ran until mid-September! Oh well, you're right in that they already won in their Grammy's eyes!

Take car of yourself :)

Susan said...

Hello Heidi,

I've just updated my blog!!! I hadn't gotten your comment as I hadn't changed my email to our new email address...so one thing and another!!!!

Anyway I wanted to say how I could identify with your eye situation. I had optic neuritis a few years back now. At the time as there were no other symptoms, they thought it might be the start of MS. But I've been given the all clear on that. This situation also was something that no medical help could do anything about it. It was over 12 months, before I could say my eye was ack to normal.

I too therefore appreciate being able to see and do what I've done, as far as my handwork, over the years. I had to get glasses last year for the first time. So continue to be thankful to enjoy doing what I do and yet know thta one day I won't be able todo fine embroidery or x-stitch on linen like I enjoy now.

I do hope and pray you'll have good recovery and many more years of enjoyable creative pursuits.

Regards,

Susan
Manjimup W.Aust

Pooch said...

May God bless you and keep you. May His everlasting light shine upon you.

Prayers for your health and vision to be healed and touched by Our Lord.

:)

Crossed Yarns said...

Dear Heidi
My thoughts are with you and I join others in prayer that all will be healed. Courage!
xxx Pokua

Ann said...

I am sorry to hear about your eye problems. I have glaucoma, and so I can relate just a little to the fear...

You are in my prayers.

Angela said...

Oh gosh, Heidi,
I'm so sorry this message arrived during the time we were offline with computer problems and I didn't see it any earlier.
My heart goes out to you and I pray that the outcome of this worrying eye condition is a successful one. You have been through so much over your health that this seems very unfair. I am always so inspired by the brave and optimistic way you face these challenges in your life. You always just roll your sleeves up both literally and metaphorically and get on with life and living. Will wait to hear your news.
Lovely progress on Chester :-) and how amazing to see the ponchos in that video...haha! Brilliant.
Angela xx

Pointed Stitcher said...

Heidi- I am so sorry to hear of your health difficulties. God has already used this difficulty in many people's lives just by your positive attitude. God has known all your life that this would happen to you and knows what your future holds. Thank you for being an encouragement to me.

Annie said...

I'm so sorry for you, Heidi ! I send you all my best thoughts and hope all 'll be fine for you quickly. AmitiƩs de France

amala said...

hello heidi,

today is the first time i read your blog and i just came about this posting of yours. i too suffer from this eye-disease (in germany it is called "androkrine orbitopathie"). i got the diagnosis in 2004. since then a lot has changed and today i can cope with this disease quite good. i want to encourage you: don't give up! it needs a lot of time, but i can tell you - i am still able to do quilting :)

all the best for you,
amala