Tuesday, May 14, 2013

On my own

Well I have my husband and kids, but I mean I am on my own without my mom do every day chores :)  I am feeling pretty good but still gets tired easily. I had a burst of new found energy about 2 weeks ago but it went away as fast as it came. haha The kids do anything I ask them to. I am just working now on them doing certain things naturally and without mommy to tell them. Duh!  I get so dizzy, nauseous and sick when i move my head, like doing dishes or folding laundry, or putting it away...your head is always moving from one direction to the other. It's frustrating at times because these are the 2 main never ending house chores it seems like.  I once put a note with "please do your own dishes" by the sink but only the younger kids observed it. I now know that there are certain things I never ever should expect to change.   C'est la vie!

I truly enjoyed having my mom here. Not just for her help of course, but for her company!! She was here for so long that we got to sit and relax, just both on our laptop catching up with the world.  My sister got my mom and I our first ever massage. Oh my gosh it was so good!! It was so draining too! All we wanted to do afterward was sleep. haha

School is almost out!  I still feel like I had just gotten really sick and its no later than mid March or something.  I am 2 months behind, and its been doing that since the surgery. haha I would wake up thinking it was December first. Anyway, now i know and remember what month it is, but I always think its Friday. hahaha

It is so bitter sweet that since the surgery, I have met people with a cavernous malformation in the brainstem.  I only found my 3 beloved friends  when I was in the hospital!  Their situation was more like mine too...  they had surgery. Most people I have met do have the condition, but it didnt cause problems yet. There is one lady that had a hemorrhage and was told inoperable, and thru my story she is sending her disk to Dr.Spetzler. I am so excited for her and I pray that he can remove it for her!

Just 2 weeks before my health took a drastic turn in February, my friend Melissa showed me a support group called avmsurvivors.org . I had found it around October or so, but since it was for people with AVM's,  I didnt think it was for me ,but  I was so desperate to find someone to talk to/relate to at this point that I posted.  In the last 5 months, I have come across to few with Cavernous Malformation that required surgery, but a lot of people with AVM. Its  so similar in nature, the symptoms, the struggles, the prognostics etc are identical really.  Its about a Cavernoma or a AVM may or may not bleed. People with ones that never bled but know they have it (its quite a weird feeling to know you have a ticking bomb in your head yet you feel perfectly fine) the people who had bleeds, have small or big deficits but prefer not to operate, and the ones that either had Emergency surgery or like me, needed it and preferred to take the risks now and have it other than drop dead God knows when. There are other variables but that's pretty much it.  We can all relate so much to one another. Some stories shows me how blessed I am... not just in my recovery but overall situation. It truly always can be worse... and it breaks my heart.

Anyway, that site is one of many support groups founded by Ben Munoz, who had a AVM hemorrhage, causing a stroke,  at 29, and couldnt find any support groups. Some conditions are so rare, that even if you find 50 or so around the world with the same as you, its still too few to hold a support group with constant traffic etc. So Ben's funded Ben's friends, a support group with many other rare conditions. Basically one huge community divided in many other ones.    He asked me to make a short video of how I came to be on Ben's friends for a group of runners that are going to run a mud run in Houston, TX, on Saturday 25. Most of them are medical students and we are trying to build awareness on rare conditions.  I said yes right away because it is so important to me to do everything I can to maybe reach out to even if its only one person. One person that felt alone like I did, or one person that was told "inoperable"...  I never made a video... the only time i use the webcam is for skype with my family. haha    Here is the video:

http://www.youtube.com/watch?v=83_suhmkayQ 

I dont know why it wouldn't let me put the video directly.

I have a Ophtomalogist appointment on Friday. We will see how my vision changed. That is for my vision strenght/weakness, not for the double vision! I have to take a appointment with my ENT. I keep forgetting that...I will call him right now. haha





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