This mornings devotional reallllly really hit the spot!
One of the things that it said that I really enjoyed was... When you get so used to living with your problems and hang-ups you will start to lose your desire to overcome them, the enemy has you right where he wants you.
After everything that I have been through this past year and not to mention all that is new this week that's going on with my doggie. The other day after we got home from the emergency vet it was 2 am or later I don't even remember exactly but I got out of the car and said... "I am ready... Shoot me, rob me... What's next"?
My main reason for sharing this is that I feel I am ready for more punches to get thrown at me and I am not asking-begging God to help me and to help these things that are being thrown at me to STOP... I am just taking these "punches' and thinking well God has a plan with it, God has a BIGGER PLAN with it... But after reading todays devotion I thought holyyyy crap... I realllly need to step back and ask GOD to help me and take me by the hand. I really need to PRAY for all of this to not only have a purpose but to STOP. I just keep getting deeper and deeper in a mess that I feel like I have given up to Him but at the same time I feel that I am letting the evil take me over and win.
I need to fight.
AND I WILL FIGHT.
On to the other stuff... Let's just say thank GOD for sending me people in my life that have helped me so much physically, financially and much much more etc. love,joy all that.
Yesterday I had a client that I know was sent to me on that very day to show me that I am loved and cared about. She was so sweet and I am so thankful for her blessing... And not to mention I am thankful for each and everyone of you for the love and joy and blessings and prayer and hope that you have shined on me! :)
Right now times are super duper rough but hey... Thank GOD for plastic and I mean credit cards... Without it I don't know what we would be doing about Bella and all the thousands she has cost us within the past few days...
Right now I need to remember the truth and stay close to the light.
As for how I am feeling these day... I am alright. Not great. Not horrible just alright...
But I am content being alright...
I have an amazing journey ahead of me and I am so ready to take it on. More surgeries who cares... I am ready for the HUGE prize at the end... It could never come until the end until I am dead and gone BUT I WILL TOTALLY TAKE THAT...
Cool thought for today...
Our actions are what set things in motion... :)
::Giving way to that familiar ill::
ME!
6.19.2010
Finally... More news just for you! :)
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::
/:
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::
6.06.2010
After a crap load of test after test... After test here is my answers from my trip to NYC to The Chiari Institute.
I won't bore you so let's make this longggg story short. (one reason I decided to email you all is bc I don't know if I am going to be up for telling each individual what's going on over and over. I got to do that with my family the day we got answers and wanted to scream by the second person).
It was confirmed that I do officially have eds. That stands for ehlers danlos syndrome. It's a connective tussue disorder. It effects every single peice and part of my body from head to toe. Tissue is everywhere connecting everything. Tissue sits inbetween all your joints and all of your vertebre in your spine and the list goes on. It has a lot to do with tone and holding things together like glue (they call it the fatty like substance that holds us together like glue). So to get to the main problem for me is holding up my head aka cervical cranial instability. These two things are what are bothering me the most my Spine and head stability. So let me explain more on eds. The tissue is a fatty like substance that plays as cushion and connection. I am not producing that fatty like substance. So basically I am just muscle and bone to narrow it all down. Not 100percent but a lot. The doctor explained that me being tall, thin, strechy skin, young skin and extreamly flexible is all external signs (they did some crazy test and there were also other signs) as the dr said all of these things are nice to have. Dot yay just yet. Ha. He said I haves supermodel body. Pshhh ha whatever. But my insides are in trouble. My joints are 10-15 years older than other 25 year olds. So basically I am 18 on the outside and 40 on the inside. (hey that's actually what the wii told me awhile back. haha). So to the point... Having eds is causing my head to be unstable bc there is not tissue (etc etc) to help it be bouncy and movable. This makes me think of brakes and how when you don't have the shoes or is that boots haha you grind. That basically is the best way I can explain abd describe it. It's causing my head to not be able to hold it's self up for long periods of time and it's putting tonnnns and tonnnnnns of pressure and pain on my spine. Like a pushing down affect. Think grinding brakes again how one things effects and leads to another. That pressure has already caused disk in my lower spine to start slipping /: this also putting a lot of pressure on my brain stem. Your brain stem is in change of breathing swollowing standing and a few more things. This leads to eventually make all of those things harder and harder for me to do. And scary thing is maybe to never be able to do one my own. But... You can stop the process and actually make these/those things better!!! Yay! Which is why they would want to eventually fuse me. The fusion would be later on it could be three months it could be a few years. It all depends on how fast all of these things start affecting me and how I start to feel after loosing the function of doing these things. :((( A fusion means no more moving my head. They literally fuse it in your skull and down to c4 with medal rods. There are two rods with 6 screws in my skull and 4screws in my vertebras. This would be forever. And my skull would eventually grow onto them. (as for you all saying I have a few screws loose in my head will be the joke of my life) fusion helps the head to sit up high and takes all of the pressure away and the pushing down away that's on my brain stem and spine. This pushing that is accuring now is also causing my fluid. Csf. Aka water in the brain to be getting stuck. Stuck in my lower spine and stuck in my brain. I am cutting it off when I am bending down even slightly bending down. See all of this csf/water is suppose to travel from brain allllll the way down to you tail bone in your spinal cord and alllll the way back up. It getting stuck is causing swelling. Swelling of the cerebellum (this is what I had surgery on this past July- yes the surgery releaved a lot but is still tooo dang big) The swelling is causing horrible horrible head pain black curtin flashes eye problems and the list goes on. It doesn't just end with only swelling but it can eventually or could have caused cist to form in my spinal cord. Since the fluid would just be sitting and sitting and building up. Butttttt for now I am on a new medication that acts as a shunt. This means lotssss of pee for Felicia. It's going to take my csf- water away from my brain and spine and plug it to my kidneys. Which means pee time. These pills have a lot of side affects. So please pray I bypass all of them. I am also going to be wearing a corset. This is to keep my spine straight. Eds is causing me to hunch. Hunching equals cutting off the csf. I am also going to start to wear a neck brace in the car and around the house. Only as a passanger. See every bump I go over is crutial. And ouchie bc it's the brake affect again. So yeah I get to make a super cute fashion statment ha. Oh my. So with the new drugs for the flow to leave my body I am on a few things to hopfully prevent these side affects. And am on a big muscle relaxant for the night to stop me from tensing which is yet another thing eds people do tense bc they don't have the glue to help when you may bounce in a car or running or ridding a bike. This also leads for me to be weak and for my bones to brake or sprain easily. :( so no fun activities. I am not suppose to do yoga pilates or stretch. It could also cause breaks. :( guhhh what can I do. Well I can get massages. Actually they say I need to and to do phsical therapy three times a week. I quess that's all I get to do. /: physical therepy is suppose to build up my neck which is what I need before they would even fuse me. Cutting threw that muscle again could be baddddd news if I had no muscle built up. Also I need bone density test and my lord this is story is getting long but the list goessss on and onnnnn on with all the information I hold and was told. But hopefully this can help you understand what's going on. :)))
To make this story all better I must say I got my answers and I am ready to try these things to prolng the surgery and to releave some pain while I build up my tone and while I work on my bones getting tons of calcium and more vit d. All these are mandatory before they can fuse me. Why bc my bone could turn into mush like cheese if it's unhealthy the doctor said.
::Giving way to that familiar ill::
It was confirmed that I do officially have eds. That stands for ehlers danlos syndrome. It's a connective tussue disorder. It effects every single peice and part of my body from head to toe. Tissue is everywhere connecting everything. Tissue sits inbetween all your joints and all of your vertebre in your spine and the list goes on. It has a lot to do with tone and holding things together like glue (they call it the fatty like substance that holds us together like glue). So to get to the main problem for me is holding up my head aka cervical cranial instability. These two things are what are bothering me the most my Spine and head stability. So let me explain more on eds. The tissue is a fatty like substance that plays as cushion and connection. I am not producing that fatty like substance. So basically I am just muscle and bone to narrow it all down. Not 100percent but a lot. The doctor explained that me being tall, thin, strechy skin, young skin and extreamly flexible is all external signs (they did some crazy test and there were also other signs) as the dr said all of these things are nice to have. Dot yay just yet. Ha. He said I haves supermodel body. Pshhh ha whatever. But my insides are in trouble. My joints are 10-15 years older than other 25 year olds. So basically I am 18 on the outside and 40 on the inside. (hey that's actually what the wii told me awhile back. haha). So to the point... Having eds is causing my head to be unstable bc there is not tissue (etc etc) to help it be bouncy and movable. This makes me think of brakes and how when you don't have the shoes or is that boots haha you grind. That basically is the best way I can explain abd describe it. It's causing my head to not be able to hold it's self up for long periods of time and it's putting tonnnns and tonnnnnns of pressure and pain on my spine. Like a pushing down affect. Think grinding brakes again how one things effects and leads to another. That pressure has already caused disk in my lower spine to start slipping /: this also putting a lot of pressure on my brain stem. Your brain stem is in change of breathing swollowing standing and a few more things. This leads to eventually make all of those things harder and harder for me to do. And scary thing is maybe to never be able to do one my own. But... You can stop the process and actually make these/those things better!!! Yay! Which is why they would want to eventually fuse me. The fusion would be later on it could be three months it could be a few years. It all depends on how fast all of these things start affecting me and how I start to feel after loosing the function of doing these things. :((( A fusion means no more moving my head. They literally fuse it in your skull and down to c4 with medal rods. There are two rods with 6 screws in my skull and 4screws in my vertebras. This would be forever. And my skull would eventually grow onto them. (as for you all saying I have a few screws loose in my head will be the joke of my life) fusion helps the head to sit up high and takes all of the pressure away and the pushing down away that's on my brain stem and spine. This pushing that is accuring now is also causing my fluid. Csf. Aka water in the brain to be getting stuck. Stuck in my lower spine and stuck in my brain. I am cutting it off when I am bending down even slightly bending down. See all of this csf/water is suppose to travel from brain allllll the way down to you tail bone in your spinal cord and alllll the way back up. It getting stuck is causing swelling. Swelling of the cerebellum (this is what I had surgery on this past July- yes the surgery releaved a lot but is still tooo dang big) The swelling is causing horrible horrible head pain black curtin flashes eye problems and the list goes on. It doesn't just end with only swelling but it can eventually or could have caused cist to form in my spinal cord. Since the fluid would just be sitting and sitting and building up. Butttttt for now I am on a new medication that acts as a shunt. This means lotssss of pee for Felicia. It's going to take my csf- water away from my brain and spine and plug it to my kidneys. Which means pee time. These pills have a lot of side affects. So please pray I bypass all of them. I am also going to be wearing a corset. This is to keep my spine straight. Eds is causing me to hunch. Hunching equals cutting off the csf. I am also going to start to wear a neck brace in the car and around the house. Only as a passanger. See every bump I go over is crutial. And ouchie bc it's the brake affect again. So yeah I get to make a super cute fashion statment ha. Oh my. So with the new drugs for the flow to leave my body I am on a few things to hopfully prevent these side affects. And am on a big muscle relaxant for the night to stop me from tensing which is yet another thing eds people do tense bc they don't have the glue to help when you may bounce in a car or running or ridding a bike. This also leads for me to be weak and for my bones to brake or sprain easily. :( so no fun activities. I am not suppose to do yoga pilates or stretch. It could also cause breaks. :( guhhh what can I do. Well I can get massages. Actually they say I need to and to do phsical therapy three times a week. I quess that's all I get to do. /: physical therepy is suppose to build up my neck which is what I need before they would even fuse me. Cutting threw that muscle again could be baddddd news if I had no muscle built up. Also I need bone density test and my lord this is story is getting long but the list goessss on and onnnnn on with all the information I hold and was told. But hopefully this can help you understand what's going on. :)))
To make this story all better I must say I got my answers and I am ready to try these things to prolng the surgery and to releave some pain while I build up my tone and while I work on my bones getting tons of calcium and more vit d. All these are mandatory before they can fuse me. Why bc my bone could turn into mush like cheese if it's unhealthy the doctor said.
::Giving way to that familiar ill::
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