it's official..

[lauren grier]

my body hates itself... that's what autoimmune disorders are right self hate. self destruction

I had my hematology appt this morning. It's all official like now. I have antiphospholipid syndrome (if you feel like reading the boring stuff- in short, phospholipids & cardiolipins are fats in your cells, including blood cells, and my body.. smart like it is.. attacks them). You can have this autoimmune disorder and never develop clots and be pretty much fine..low risk peeps even can just take aspirin as it thins the blood... but as you know my clotting was extreme, and well, I'm very lucky to be still kicking. I'll be on blood thinners for life now. Coumadin/waffarin for now- but hopefully in a year or two (per hema dr) there will be some new drugs on the market that are easier on the body/not such a pita.

I knew this was coming, but I'm still pretty seriously bummed atm. So you know.. give me a kick in the butt..chin up.. you could have died and you didn't so shut up. you know..

[mummytothree]

nope I'm just gonna give you a

[KristinCB]

gah sorry la.. I'm glad you were finally given a diagnosis though and are able to know whats going on with your body.... sorry that you have to be on the blood thinners

[kristijoy]

Oh man. I think definately hugs!

[nikkiARNGwife]

Yep just lots and lots of hugs!!

[Angie4b1g]

We always knew you were special.

[deepounds]

Lots of hugs from here, too, La!

[ColleenSwerb]

It's ok to be a bit bummed out La, that's a major thing to have to come to terms with! But I'm glad you have a solid diagnosis now and know what's going on with your body, even if it hates you

[isaacsmom]

(((hugs))) Glad you were able to finally have a solid diagnosis.

[nun69]

yeah but you are strong and will kick it's ass anyway

[HeatherKS]

Just lots and lots of hugs from me too. I'm glad you have a solid diagnosis and are able to start to regain your life. *hugs*

[MamaBee]

At least you have more answers... and you have a point to go from there. Wishing you all the best... and sending loads of hugs your way!

We are just very, very thankful that you are still with us!!

[CA Dreamer]

So sorry about this. It IS such a bummer. I am so glad that you made it through the scary part!

Just wanted to tell you that my DH had a big DVT last year in April. Followed by pulmonary embolisms(small ones, but still scary!). He also was found to have the antiphospholipid issues with the Leiden Factor thrown in. He was on the blood thinners and a host of other medications. Finally, this month, the Drs told him that he could go off the blood thinners and just stick to aspirin - the Drs did not think he would get to that point, but he did -- just wanted to give you some hope of that!

Make sure that you stick to a steady diet with the leafy greens because that can throw off how much blood thinners you need. And, take breaks when you guys go on vacation to give you a chance to walk around a bit every couple of hours. ((hugs)). So sorry that you have had to go through this!

[Jengerbread88]

:: hugs ::

I know my dad really struggles on both the coumadin and the warafin. I hope you hang in there, and they get some better medicines that aren't so hard on you soon.

[lauren grier]

Originally Posted by Jengerbread88

:: hugs ::

I know my dad really struggles on both the coumadin and the warafin. I hope you hang in there, and they get some better medicines that aren't so hard on you soon.

they're the same med :] generic/name brand.. he def should not be switching btwn the two thats a big no no for stability


thanks guys :] and yes i am very special

you've given me hope robin :] thank you <3

[heathergw]

lots of (((HUGS))) from me too!!! I'm so glad you finally got an official diagnosis... wish it were easier though!!!

[newfiemountiewife]

Originally Posted by ColleenSwerb

It's ok to be a bit bummed out La, that's a major thing to have to come to terms with! But I'm glad you have a solid diagnosis now and know what's going on with your body, even if it hates you

^What she said! LOL!

[Leah]

Awww La, I'm sorry. {{hugs}} It is treatable though, so that's something to be thankful for, but it does suck that this is a forever thing.

[Happy Now]

Hugs from me too! There are a few autoimmune conditions in my family too... Sucks for sure!!

As miraculous as life is, these types of things just boggle my mind...

[emmasmommy]

you're entitled to wallow for a little bit. i'll come kick your ass in a few days if you're still melancholy

[jaylensmom]

Awww hugs La...

[purple_colourz]

More hugs from me La

[jessica31876]

No you have to grieve for what you thought your life was going to be. It is normal I think. I felt the same way with each of my diagnosis. It sucks...then you just kinda accept what is wrong and find a way to live with it and go on. Til then lots of (((HUGS)))

[rainydays]

[pomi]

I'm sure it doesn't mean you will be on these meds for your entire life, La. The medicine is developing and there will certainly come something better. From what I've heard about autoimmune diseases in general, I'm a big believer that the mind does a lot here. So just take it day by day. Miracles do happen.

[*Celeste*]

here's hoping that a new drug comes out soon. in the meantime at least you don't have to eat spinach!

[lauren grier]

Originally Posted by *Celeste*

here's hoping that a new drug comes out soon. in the meantime at least you don't have to eat spinach!

i love spinach.. its very sad ^_^

[rachaelsscraps]

it's a pain in the butt, but at least you know what the problem is, and there's some way to control it. meds aren't fun, but at least they'll help you.

[kendallt]

I think it's perfectly normal to feel down. This is a lot to hafta deal with. My advice is to treat yourself to something special. Starbucks, chocolate, new book or magazine--whatever "guilty pleasure" you need to cheer yourself up. It's not much, but it's something.

Hope it gets easier, La. Hugs!!

[Jengerbread88]

Originally Posted by lauren grier

they're the same med :] generic/name brand.. he def should not be switching btwn the two thats a big no no for stability

Oh! Lol, point of clarification... he wasn't. He was on coumadin, but his work said that he couldn't keep his job if he was on coumadin. HOWEVER, they allow Warafin, even though it's the same med. His doctor switched him several months ago, but he's not switching between them or anything-- he was taken off of one, and put on the other, through some sort of process I don't fully understand :P

[*Celeste*]

i'm sorry about the spinach. you can have a little green everyday as long as you eat the same amount. my mil has been on coumadin for years.

[lauren grier]

Originally Posted by *Celeste*

i'm sorry about the spinach. you can have a little green everyday as long as you eat the same amount. my mil has been on coumadin for years.

yeh i just have to keep it under 120mcg .. but, spinach has about 4636363636262 mcg (clear exaggeration but its high) so i could have a bite of spinach a day ^_^ no Popeye here.


eta: cooked spinach is the one with a gabillion mcg of k that is

[scrapsandsass]

Originally Posted by Angie4b1g

We always knew you were special.

This.

[Davita]

Sending you hugs La.

[DeepGirl]

Originally Posted by nun69

yeah but you are strong and will kick it's ass anyway

YESSS!

[eranslow]

Big HUGS La!! We love you!

[Lyd]

Love you La! Big hugs from me!

[Aggie Aviso]

Things will get better! Hang in there!

[AmyG]

and prayers!

[tanyiadeskins]

Just hugs from me, too. Stay strong!

[Tracie Stroud]

I'm so sorry La.

[schock77]

Sorry La... that sucks but at least the meds should keep you from return hospital trips, right? I know there's no bright side at the moment, but sending hugs your way.

[Megan Turnidge]

More hugs from me! Sorry that you're having to deal with this.

[lauren grier]

thank you girlies <3

[lovely1m]

Hugs! Its still gotta be tough to learn all this even if you knew it was coming.

[joelsgirl]

Aw, La. I'm so sorry. I am, however, very thankful you are still alive and hope you will last a long, long time.

[Jennifer]

[mrshobbes]

Originally Posted by nun69

yeah but you are strong and will kick it's ass anyway

^^ Word. *HUG*

[aly321]

La you rock lady! You are going to rock this too. So glad that your are finally able to know what it is and a treatment, even if the treatment is tough. I know you are probably done with the lovey hugs and stuff, but we really do want you to know that we are here! ♥

[color of my heart]

{hugs} i don't approve of your body being so uncooperative. just saying.

i hope everything smooths out. and that your body evens itself out in some way, and that the thinners do their thing without too many side effects.