I have seriously came to this journal multiple times to write and then end up erasing it and closing the tab out. I don't know if I am afraid/scared or speechless about this life I have been dealt.
/:
Here are a few things that I thought I should share with you all reading this...
1) I am only sitting here typing at this very moment because of one reason, I have JESUS. I have told myself so many times that I was ready to give up on life. But having the love of my JESUS shine threw each one of my friends and family I have finally come to the point in my life that I feel I can give it all up and trust in HIM with whatever he has planned for my life.
(Those words can just be read over and taken so lightly but honestly the pain and the hurt that I have dealt with has been so tremendous that I smile when I think of how strong I have stayed threw all of this, I am a fighter I tell myself daily and I have been given this journey for a reason... That also makes me smile!!!)
2) Things that don't make me smile are things that I had such a love and passion for in this life that have been taken away from me with the depression, the neurological disorder, the ehlers danlos disease, and talk about more surgeries and more surgeries... I could type all the things I AM NOT ALOUD TO DO ANYMORE out but it's just stuff right... And I know that I can learn to love others things just the same if I put my heart and mind into it!!!
3) I feel I have been such a burden to all of my friends and all of my family... I feel and God has given me so many words to use to tell you all. And the newest and easiest one being "I don't want to talk about it." I mean I do... BUT I don't... You have to think I have a lot of anger towards this "part" of my life and why would I constantly want to have it brought up? I know each and everyone of you cares. I know. But its such a downer when your friends don't ask you things that make you smile anymore just things that make you sad and cry... I don't want my relationships with ALL OF YOU to become "HOW ARE YOU HEALTH WISE." With that being said JUST follow my blog and I will try and keep you all updated! :) Or if I start to talk about it... Just listen!
Hmmmm I know there was so much on my mind when I went to write this and now I can't remember...
Ohh. One being that I stopped cold turkey taking the Diamox (that crap sucks) it was making me worse of then I already was... I was suppose to be taking my CSF (spinal fluid) and acting as a shunt and pulling it to my kidney's... Well I honestly think it was trying to pull my brain to my kidney's. So we tried half a pill... Nope still the same... Then we tried a quarter of a pill and yep nope still the same... So I said screw it. I like myself having to much fluid in my head then. I can handle swooshing sounds when I bend over slightly, I can handle feeling dizzy and faint like... Yeah I can deal as long as I can sit up. This stuff had me on my death bed... THE COUCH. NOOO THANK YOU! I emailed my Dr. in nyc and he told me that if I want to stop the Diamox that is fine but he's there and ready whenever I am ready for surgery... Dang Mr. I was hoping you would give me straight up heroin to ease the pain... (j/k)
Onto another thing... I am suppose to be doing physical therapy three times a week and massage therapy three times a week... Ummm so when am I suppose to work? And how the heck and I suppose to afford 40$ co-pays everytime I go see the P.T. or massage gal? That's 240$ a week. WHAT? That's my rent a month. I think I need to win the lottery. What do you think? So we won't be following those rules...
(I feel like I am ranting... hmmm)
Last rant!!! I just got a letter from an attorney... I GOT SENT TO COLLECTIONS... WTF?
LASTLY... So so soooooo many more test this little girl has to have... :(
1) Bone density test- why? Before I can do the invasive cranial traction aka this... http://media.tripod.lycos.com/2186839/314x476_157_238_0.487_1_645_978-852248.jpg
I need to make sure my bones/skull is tough enough to handle the screws. Yikersss.
2) Ultrasound of the abdominal aorta. Sounds cool right... Until you read why... Having EDS causes you to have thin valves... Which means aneurysms. So we need to check that off that an aneurysm is not happening anytime soon.
3) Echocardiogram to check for Mitral valve prolaspe... Another test to check the valves...
4)Another MRI of my Lumbar Spine in prone position- why? That means me on my belly in the tube instead of on my back. This way they can see my spine much better to see how bad this tethered cord business could be... (a whole new subject)
Well I hope I left you with lots of fun stuff!
XOXO!
::Giving way to that familiar ill::
For some reason this is God's plan for you. Sometimes it really, really, really sux! But he only gives you what he thinks you can handle...he must think extremely highly of you!
ReplyDeleteSomehow, someway its going to be ok. You are a bright light that brings so much to so many without you even realizing! Keep up the good fight, this journey is happeing for a reason.
You are truly special, embrace this and do what makes you happy! I will continue to send prayers, love and good positive enery your way!Cindy J.