Tuesday, October 2, 2012

Lots of Loss

Hi, all.  I've been away.  Been a very long month full of lots of changes and ups and downs and losses and just figuring out how to cope.  I know that I only posted once in September, and that's like a record all time low for me.  How you all must have been in Cute Mila Picture Withdrawal!  Sorry I cannot appease your appetite today; I'm kinda busy and stressed and not much in a picture posting mode.  But I will try to get some pictures of the kids up soon.

Lots of Loss this month.  Lost my treatment team.  More on that later, but it was my choice, and I feel okay about it, and I think ultimately it'll be good.  But it's been an adjustment.

Lost a baby.  Wasn't very far along, but miscarriage is tough.  There's no getting around it.

Also just found out that I have a degenerative eye disorder called Keratoconus.  When I found this out I just cried and cried.  It is a disease that can never be corrected with glasses, contacts, or lasik surgery.  At some point I will need surgery, most likely corneal transplants.  Even with glasses or contacts, I will never be able to see better than 20/40 or 20/50, which barely makes me legal to drive.  And, it's degenerative, so it'll most likely get worse.  To think that my vision is always going to be severely blurred, even with glasses or contacts, for the rest of my life...devastates me.  Maybe it sounds stupid or petty, but it scares me and makes me awfully sad. And, the fact it could get worse...that scares me too.  Most never have to worry about losing their vision, and while I won't go blind, if I get to a point where I can't even see well enough to legally drive, well, that's pretty bad.  Even now, when wearing glasses or contacts, I squint.  I just can't see.  And to find out this news, well, it was devastating.  But I am going to make an appointment at the state's most prestigious eye center with a well-known doc who specializes in this, and hopefully get on the list for a corneal transplant.  They caught the disease quite late; I've had a lot of trouble for a long time but just didn't know why I couldn't see; I assumed the optometrist who last did an eye exam just didn't give me the right prescription.  He wasn't very competent and didn't catch this, which frustrates me.  I could have found this out a lot earlier had people known where and how to look for it.  It's not very common, which I think is why people thought I had extreme astigmatism and not Keratoconus.

So, that's been my month.  Lots of loss.

But I'm not as sad as you would think.  I am okay.  Please know that I am okay.

22 comments:

Liz said...

I am so very sorry for all your loss. This must have been a very hard month. I'm glad to hear you say that you are doing ok and I really hope that's true. If you need anything at all please let me know, I'm here for you. You're always in my thoughts and prayers.

KC said...

xoxo

Krista said...

Brie, I am so sorry for your loss. I think miscarriage is hard no matter the gestational age. I hope you have been able to find some peace. Are you looking for a new treatment team or are you planning on taking a break from therapy? I am here if you need to cry, vent, or just wanna hang out and do something fun. Thinking of you.

Adam and Cassie said...

Shit girl, that's terrible. I am so sorry. Don't hesitate to call, text, or Facebook me if you need anything. I'm a really good listener. Remember that it's okay to be angry and devastated. Sending lots of love your way.

simonattic said...

Oh Hun, I'm so sorry you're going through all this! When it rains it really pours on us sometimes. I'm praying for a rainbow for you, or at the very least, a freaking beak! So many changes......and scary ones, at that! I've had 2 miscarriages, and it may not be as hard as losing a baby later on (like you did), its still incredibly tough. I hope your new eye docs can somehow help your eyes.....I'd be devastated too. You're tough, and you can and will get through all of this! I totally believe in you, cuz girl, you've got grit!

Elizabeth said...

Oh Brie. I am so sorry to hear all this... You are incredibly strong to say you're OK. I'm praying for your eyes..I know you're such an avid reader, so this sucks. I hope it will be okay in the end

Elissa said...

Brie you are one of the strongest people I know and I am so sorry that this has been a hard month. Know that I am thinking of you! I hope things turn around for you.

emo said...

Wowzers.
That is a lot to take in. You are in my prayers. I hope your doctor will be able to figure out more and ease your mind.
As for Kendall, so sorry too. I can kind of relate to that...I found out myself that we miscarried yesterday. :( It's something you don't get until it happens to you.
Hope everything can work out the best way. I'm sure you will be blessed. ;)

Shawnee said...

Oh honey, I'm sorry. One of those things happening to a person would throw their world off its axis, and you've had them all at once.

My dad has keratoconus. It's so hard.

One of my dearest friends also has it, but in June he had surgery to correct it. He found the one surgeon in the entire country that can fix it, and he did. The doctor is in California, but he really worked a miracle for Daniel. Let me know if you'd like any more information just to look in to it. I'd be happy to help in any way I can.

Amanda P said...

Hey Brie - Matt has Keratoconus (I'm certain I just spelled that wrong). He had surgery and currently doesn't have to wear contacts or glasses. It's a new surgery developed by Kaiser and Stanford. You may want to give Matt and buzz and learn some more. He will still probably eventually need corneal transplants, but this surgery has held that off and made it possible for him to see (he was legally blind in one eye before the surgery). I'm sorry for all the change and loss. Take care of yourself.

ania said...

Dear Brie,

I'm so sad for you that you lost your baby.

I don't think it's at all odd to be so upset about a degenerative disease that will impact your sight.

Please try to take care of yourself and your family, and yes - eventually - we'd love some Miladorableness.

Thinking of you with tender care....

simonattic said...

I just read some of the comments, and noticed Stanford was mentioned. I too have heard great things about Stanford medical school and hospital. If it comes down to it, maybe you should try contacting them? And if you ever do go out there, I live nearby and can drive you around and help out in any way.

allegri said...

I am so sorry love, these are all devastating. You are in my prayers. I can't imagine what you are going through, but I want you to know that you are loved, and amazing, and woman of God, and he will protect you through all of this.

Also, my husband has a close friend that is a retinal neuroscientist up at the Moran. Here is is {blog} and email http://prometheus.med.utah.edu/~bwjones/ bryan.jones@m.cc.utah.edu maybe he can help with some advice on the matter.

Prayers.

bri said...

I love u B! We must talk soon! I am soooo sorry things are so hard. Wish i could take it away for u! Love u lots!

Maeve said...

I'm really sorry that you've had so much loss lately. That sounds like a very difficult month.

I hope that you can get on the list for the corneal transplant soon.

You are very strong!! Don't forget to take care of yourself in all of this.

Colleen said...

so much love for you, brie. so sorry to hear about all the losses. prayers of strength and grace for you <3

Frustrated Unemployed Actress said...

Hugs.

Tabatha Bourdel said...

I'm truly deeply sorry to read about your losses. You've had a terrible month. I hope you can get help from your loved ones that are not so far away from you, as I am... You need love and hugs, let me send your some virtual ones!
Much love from Paris, France

ania said...

I love that your readers are chiming in to share if they have connections to doctors who may be able to help, or a loved one who has experienced your disease and can let you know how they deal with it.

alriggells said...

I wuv you girly

Sarah Hope said...

So many challenges. I am thinking of you. And wishing you strength and patience.

Stacy said...

I have been thinking about you a lot lately. I am so sorry for your loss. I am sorry it hurts and that it is hard. I can't imagine the emotions that come up with a miscarriage. And your eyes.. I am so sorry. I hope some of the hopeful comments posted point you in a direction that can help you before needing transplants. I listened to something recently talking about the atonement and the role of the Savior in our lives. It covers the hurt and sadness and loss and pain. "Christ does make up the difference, He makes ALL the difference" I am glad you are o.k.
I know it can all be ok.. it really can.