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::
5.24.2010
A WEEK AWAY!
Yeah it's been some time...
I have just been overloaded with sooo much going on in my life. LIKE moving!!! Ah. It seriously consumes you! :( But at least it's kept my mind busy so that New York would come FAST!!!
I wonder if there will ever come a day when I wake up and want to run and hop and skip and not hurt. I have been trying to remain positive thru all this doctorness since the surgery and not a big downer on my friends but waking up feeling like you carried a 300pound man thru the night and you vision is blurry and your head is pounding... Well it's getting old. New York next Monday!!! I pray so hard everyday for answers from these amazing talented doctors. :)
So we leave monday... 4am for our journey to New York. YES we are driving everyone! Brad, my momma and I.
14 hours isn't so bad... RIGHT?
I guess I truly just haven't really found the time to write on my blog because I am just trying to pretend that all is ok and normal and I am fine... And just trying to hold out for New York...
But now that its a week away... I can finally be happy and digest it all!!!
Please say a few prayers for me. Some answers... Some good ones at that!!!
XO.
::Giving way to that familiar ill::
I have just been overloaded with sooo much going on in my life. LIKE moving!!! Ah. It seriously consumes you! :( But at least it's kept my mind busy so that New York would come FAST!!!
I wonder if there will ever come a day when I wake up and want to run and hop and skip and not hurt. I have been trying to remain positive thru all this doctorness since the surgery and not a big downer on my friends but waking up feeling like you carried a 300pound man thru the night and you vision is blurry and your head is pounding... Well it's getting old. New York next Monday!!! I pray so hard everyday for answers from these amazing talented doctors. :)
So we leave monday... 4am for our journey to New York. YES we are driving everyone! Brad, my momma and I.
14 hours isn't so bad... RIGHT?
I guess I truly just haven't really found the time to write on my blog because I am just trying to pretend that all is ok and normal and I am fine... And just trying to hold out for New York...
But now that its a week away... I can finally be happy and digest it all!!!
Please say a few prayers for me. Some answers... Some good ones at that!!!
XO.
::Giving way to that familiar ill::
4.21.2010
Until "NEXT" time...
Let's recap this past week and this week...
This past Thursday thru Sunday I got to spend with my best friend... MY SISSIE!!!
It was much needed and ended way to fast... Like most get aways.
She is such a good friend. I love my big sis...
We did nothing but hang out in our pajamas and go to walmart and watch movies (you all know how much I LOVE THEEE WALMART ha). And we got manicures and pedicure and NOW I have cute purple toes and fingers! Thanks to my sister!!!
I came back from her house with some sort of stupid sinus nasty-ness.
Andddd two cute new Alice and Wonderland mugs! Yaya. I most certainly like the mugs much better than sinus pooh!
And then
Last night was good!!!
IT was much needed...
Brad had his first "show" as a singer... It was cute watching him up there... He did great, sounded great... (Well at least that is what I thought)
I haven't been to a "show"(concert-music) IN FOREVER it seems.
I was a bit on edge with the whole what if some dumb ass comes from behind and decides to push me and everyone else and accidentally hit the back of my head..?
It was great to just stand and watch and listen... I used to be at shows three days a week... Fridays, Saturdays and Sundays... I loved music. I still do it just seems that I haven't had a real chance to actually go.
Next week Brad and I are going to see JONSI! It's the lead singer from Sigur ros(s) side band! I am soo excited about this! This was my birthday present back in December from Bradley... It seems like that was ages ago but well worth the wait!
I am very excited. Ugghhh he is so talented and amazing to watch. Those dang Icelandic people and their goodness!
As of lately not a whole lot has changed in life... Just waiting.
Waiting on the doctors to review all of my medical records at The Chiari Institute in New York and from there (after they are done reviewing) I will get to make my appointment and BE HAPPY!!!
I am sooo so sooo soo very excited beyond words to meet with these doctors... They are like... Well... The ying to the yang in CHIARI world. (That means they know their shit!)
I had a doctors appointment last night I was taught how to give myself shots... This was interesting and to say the least I will not be giving myself these shots on my own... Mr. Bradley will. I almost passed out when she told me to grab the fat on my booty and to stick in the needle. I almost passed out just holding this 2inch long needle. YIKES... THEN when she told me to stick it in I almost cried I was sweating with fear... That's when I told her I should watch at least this time so I know how fast to go... Yeah and NO WAY am I doing that. I almost passed out when she jabbed the dang thing in there...Was it painful heck no. It was the fear of watching. YUCK.
So yet another thing in life I have accomplished that I never thought was coming.
That seems to be happening a lot these days...
I am pretty sick of this medical crap. And this medical world. I want to be a kid again and forget about all this... But I don't see that happening anytime soon. So Felicia you just gotta suck it up...
There is way to much flowing through this heart and mind of mine.
I keep thinking maybe change will "change" this empty shit feel. Some examples. Vacation, a new pair of shoes, a new town, a new friend or something of that sort will make me happy all over again. But I have come to the realization that those are all temporary fixes. Man I just have to suck it up and take all these punches I am being dealt. I like to think of myself as a tough chick. But honestly inside I am a broken mess. Spiritually, mentally and health wise.
Until NEXT TIME...
::Giving way to that familiar ill::
This past Thursday thru Sunday I got to spend with my best friend... MY SISSIE!!!
It was much needed and ended way to fast... Like most get aways.
She is such a good friend. I love my big sis...
We did nothing but hang out in our pajamas and go to walmart and watch movies (you all know how much I LOVE THEEE WALMART ha). And we got manicures and pedicure and NOW I have cute purple toes and fingers! Thanks to my sister!!!
I came back from her house with some sort of stupid sinus nasty-ness.
Andddd two cute new Alice and Wonderland mugs! Yaya. I most certainly like the mugs much better than sinus pooh!
And then
Last night was good!!!
IT was much needed...
Brad had his first "show" as a singer... It was cute watching him up there... He did great, sounded great... (Well at least that is what I thought)
I haven't been to a "show"(concert-music) IN FOREVER it seems.
I was a bit on edge with the whole what if some dumb ass comes from behind and decides to push me and everyone else and accidentally hit the back of my head..?
It was great to just stand and watch and listen... I used to be at shows three days a week... Fridays, Saturdays and Sundays... I loved music. I still do it just seems that I haven't had a real chance to actually go.
Next week Brad and I are going to see JONSI! It's the lead singer from Sigur ros(s) side band! I am soo excited about this! This was my birthday present back in December from Bradley... It seems like that was ages ago but well worth the wait!
I am very excited. Ugghhh he is so talented and amazing to watch. Those dang Icelandic people and their goodness!
As of lately not a whole lot has changed in life... Just waiting.
Waiting on the doctors to review all of my medical records at The Chiari Institute in New York and from there (after they are done reviewing) I will get to make my appointment and BE HAPPY!!!
I am sooo so sooo soo very excited beyond words to meet with these doctors... They are like... Well... The ying to the yang in CHIARI world. (That means they know their shit!)
I had a doctors appointment last night I was taught how to give myself shots... This was interesting and to say the least I will not be giving myself these shots on my own... Mr. Bradley will. I almost passed out when she told me to grab the fat on my booty and to stick in the needle. I almost passed out just holding this 2inch long needle. YIKES... THEN when she told me to stick it in I almost cried I was sweating with fear... That's when I told her I should watch at least this time so I know how fast to go... Yeah and NO WAY am I doing that. I almost passed out when she jabbed the dang thing in there...Was it painful heck no. It was the fear of watching. YUCK.
So yet another thing in life I have accomplished that I never thought was coming.
That seems to be happening a lot these days...
I am pretty sick of this medical crap. And this medical world. I want to be a kid again and forget about all this... But I don't see that happening anytime soon. So Felicia you just gotta suck it up...
There is way to much flowing through this heart and mind of mine.
I keep thinking maybe change will "change" this empty shit feel. Some examples. Vacation, a new pair of shoes, a new town, a new friend or something of that sort will make me happy all over again. But I have come to the realization that those are all temporary fixes. Man I just have to suck it up and take all these punches I am being dealt. I like to think of myself as a tough chick. But honestly inside I am a broken mess. Spiritually, mentally and health wise.
Until NEXT TIME...
::Giving way to that familiar ill::
4.09.2010
And what the heck is Elhers Danlos Syndrome!?
Alright GOD... Can you hear me up there!?
"Can't you give a girl a chance to BREATHE!"
I need you now more then ever. I know I need to just stay calm and carry on but my goodness this is all tooooo much.
I would like to think that any "other" person would have already flipped their shit. I would also like to think I am somewhat staying calm...
Soooo long story short I had my doctors appointment with the rheumatologist yesterday. (Yeah the fun one that made me cry two times the last appointment because she was so mean) (This time she was super sweet and nice, must have caught her on a better day :/ )
Yesterday I had a lot of things thrown at me... Super "low" potassium, Vitamin D deficiency, Fibromyalgia.... And then... Ehlers-Danlos Syndrome... WHAT!?
What Is Ehlers-Danlos Syndrome? :
Ehlers-Danlos Syndrome is a group of inherited connective tissue disorders, caused by faulty collagen (a protein in connective tissue).
Connective tissue helps support the skin, muscles, ligaments and organs of the body. People who have the defect in their connective tissue associated with Ehlers-Danlos Syndrome may have symptoms which include joint hypermobility, skin which is easily stretched and bruised, and fragile tissues. There are six major classifications of Ehlers Danlos Syndrome.
What Are The Six Types of Ehlers- Danlos Syndrome?:
Ehlers-Danlos Syndrome has been classified into six types:Hypermobility
Classical
Vascular
Kyphoscoliosis
Arthrochalasia
Dermatosparaxis
I have..." Hypermobility Type" of Ehlers-Danlos:
The primary symptom associated with the Hypermobility Type of Ehlers-Danlos Syndrome is generalized joint hypermobility which affects large and small joints. Joint subluxations and dislocations are a commonly recurring problem. Skin involvement (stretchiness, fragility, and bruising) is present but to varying degrees of severity, according to the Ehlers-Danlos Foundation. Musculoskeletal pain is present and can be debilitating.
Next step was getting more blood drawn... Checking some other things... And Brad helping me give myself shots (vitamin B12) Yikes! Yikes!
Now I ask myself... "How do you feel about all this?" I say... "I don't know, I am pretty numb with life right now."
A friend sent me this verse. I like it in sooo many ways!
Proverbs 3:5-6,8!!!
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
Be not wise in your own eyes;
fear the Lord, and turn away from evil.
It will be healing to your flesh
and refreshment to your bone
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
Be not wise in your own eyes;
fear the Lord, and turn away from evil.
It will be healing to your flesh
and refreshment to your bone
::Giving way to that familiar ill::
4.07.2010
The OTHER'S
I got a hold of a gal from a friend... Thru a friend... Thru a friend.
Thank GOD for FRIENDS RIGHT!?
I wrote her asking about the surgery that may be in my near future...
The craniocervical fusion...
And here is what she said...
(Just to help you understand what all is-will be going on with me)
(But keep in mind I refuse to have this surgery unless I am promised SOME relief and have it done at the Chiari Institute in New York)
Here is what she said... (p.s. I added" ((" for my own notes to help you understand how this may relate to me)
Hi Felicia,
I am happy to share my experience. I hope it can help. I had craniocervical fusion in August 2008 (3 years after decompression)((This is the surgery that I had this past July)).
I really struggled mentally with the decision of fusion surgery ((I feel the same!)). It felt so permanent. I worried about them putting my head in the wrong position. I took 9 months to think about it from the time they recommended fusion to when I finally scheduled my surgery.
When surgery time came, I felt very good about it and was totally ready. My surgery was tentatively scheduled for a Friday--we did invasive cervical traction ((scariest looking procedure-torture unit I have ever seen, this is the posted picture above)) on Monday to confirm that it would help my symptoms and so they could get images of the right position. They put me under anesthesia, screwed my head in the traction machine, then woke me up to see how I felt. It was amazing! ((Yikes, it sure doesn't look amazing)) Instant relief of the pressure-pain in my throat/neck. I could speak and breath easier. I was singing in there because it felt so good to push air out. I could move my shoulders better. They gave me water to see how swallowing was--so much easier. My vision was perfectly clear (I hadn't realized how bad it had gotten until I saw how good it should be)((Oh GOD this sounds amazing)). They brought my mom into the OR so they could gauge her reaction. She walked in and immediately starting tearing up, "It's Ave! I can see her eyes". (Like she could see the life and sparkle in my eyes that had been shrouded in pain for so long)((I know that I am ready for that feeling)). After that traction procedure, all my fears were gone. I couldn't wait to feel that good again.
Surgery was long: 7-8 hours, painful but much easier for me than decompression. My recovery was much easier than decompression too. But I was in really bad shape going into decompression. ((Nothing could be worse then that damn drain that had me in ICU for 8 days))
All those symptoms I got relief from in traction have stayed good after fusion surgery. The pain is significantly better. The pressure on my brainstem is gone so my entire body works better. Speaking and breathing continue to be easy. Vision is perfect.
Chewing and swallowing can still be challenging sometimes. The muscles in my neck, throat and jaw get pretty tired by the end of the day (but nothing compared to pre-fusion).
The only other symptom remaining is the muscle pain in the back of my neck, shoulder area, and upper back. I’m hoping this will improve as I gain strength (I am recovering from tethered cord surgery 2 months ago). I guess it could also be pain from having surgery in the back of my head twice. It would be a bummer if I’m stuck with it forever, but fusion and my other surgeries have totally improved my quality of life.
Before fusion surgery, I worried that it would be so stiff and rigid. I thought it would feel like wearing an Aspen hard collar all the time. It’s not bad at all. I’m fused down to C4. But I’ll be going through my day and pretty much forget that I can’t turn my head. I was already only turning with my stomach because it hurt too much to turn my head. It feels like no big deal. Some people will hang out with me for hours and not have a clue until I tell them.
The only other annoying things (not a big deal but I feel like I should tell you everything): I can feel my rods when I touch the back of my head. If I lay my head on a pillow and it’s right on the rod, I have to move positions. It causes pain. Minor inconvenience. The other is that I live in a pretty cold climate. When those rods get cold, it is a very weird sensation. Cold radiating from metal inside your body. Eeeww, but oh well. ((WOWZRS!))
I am so glad I went through craniocervical fusion. By the end of my thinking time, it didn’t feel like an option or a difficult decision. My body was getting worse and I couldn’t live anymore in that state knowing there was treatment I could try ((THIS IS SOOO ME!)). Now my neck definitely feels safe, secure, and supported. I love my rods, they have saved me.
Sorry this got kind of long. Please feel free to ask anything. I will try to respond as soon as I can.
I guess my main advice is to trust your gut. You know your body better than anyone.
Take care,
Ave
TRUST IN MY GUT!!! Thats all I can do...
Last night I prayed myself to sleep asking God to please reveal himself to me. To let me know what the best choice is for me. I am so weak inside and hide it all so well but I am ready to break down...
I have such an amazing support group I truly couldn't ask for more from them but I AM WEARING SOOO THIN...
::Giving way to that familiar ill::
Thank GOD for FRIENDS RIGHT!?
I wrote her asking about the surgery that may be in my near future...
The craniocervical fusion...
And here is what she said...
(Just to help you understand what all is-will be going on with me)
(But keep in mind I refuse to have this surgery unless I am promised SOME relief and have it done at the Chiari Institute in New York)
Here is what she said... (p.s. I added" ((" for my own notes to help you understand how this may relate to me)
I am happy to share my experience. I hope it can help. I had craniocervical fusion in August 2008 (3 years after decompression)((This is the surgery that I had this past July)).
I really struggled mentally with the decision of fusion surgery ((I feel the same!)). It felt so permanent. I worried about them putting my head in the wrong position. I took 9 months to think about it from the time they recommended fusion to when I finally scheduled my surgery.
When surgery time came, I felt very good about it and was totally ready. My surgery was tentatively scheduled for a Friday--we did invasive cervical traction ((scariest looking procedure-torture unit I have ever seen, this is the posted picture above)) on Monday to confirm that it would help my symptoms and so they could get images of the right position. They put me under anesthesia, screwed my head in the traction machine, then woke me up to see how I felt. It was amazing! ((Yikes, it sure doesn't look amazing)) Instant relief of the pressure-pain in my throat/neck. I could speak and breath easier. I was singing in there because it felt so good to push air out. I could move my shoulders better. They gave me water to see how swallowing was--so much easier. My vision was perfectly clear (I hadn't realized how bad it had gotten until I saw how good it should be)((Oh GOD this sounds amazing)). They brought my mom into the OR so they could gauge her reaction. She walked in and immediately starting tearing up, "It's Ave! I can see her eyes". (Like she could see the life and sparkle in my eyes that had been shrouded in pain for so long)((I know that I am ready for that feeling)). After that traction procedure, all my fears were gone. I couldn't wait to feel that good again.
Surgery was long: 7-8 hours, painful but much easier for me than decompression. My recovery was much easier than decompression too. But I was in really bad shape going into decompression. ((Nothing could be worse then that damn drain that had me in ICU for 8 days))
All those symptoms I got relief from in traction have stayed good after fusion surgery. The pain is significantly better. The pressure on my brainstem is gone so my entire body works better. Speaking and breathing continue to be easy. Vision is perfect.
Chewing and swallowing can still be challenging sometimes. The muscles in my neck, throat and jaw get pretty tired by the end of the day (but nothing compared to pre-fusion).
The only other symptom remaining is the muscle pain in the back of my neck, shoulder area, and upper back. I’m hoping this will improve as I gain strength (I am recovering from tethered cord surgery 2 months ago). I guess it could also be pain from having surgery in the back of my head twice. It would be a bummer if I’m stuck with it forever, but fusion and my other surgeries have totally improved my quality of life.
Before fusion surgery, I worried that it would be so stiff and rigid. I thought it would feel like wearing an Aspen hard collar all the time. It’s not bad at all. I’m fused down to C4. But I’ll be going through my day and pretty much forget that I can’t turn my head. I was already only turning with my stomach because it hurt too much to turn my head. It feels like no big deal. Some people will hang out with me for hours and not have a clue until I tell them.
The only other annoying things (not a big deal but I feel like I should tell you everything): I can feel my rods when I touch the back of my head. If I lay my head on a pillow and it’s right on the rod, I have to move positions. It causes pain. Minor inconvenience. The other is that I live in a pretty cold climate. When those rods get cold, it is a very weird sensation. Cold radiating from metal inside your body. Eeeww, but oh well. ((WOWZRS!))
I am so glad I went through craniocervical fusion. By the end of my thinking time, it didn’t feel like an option or a difficult decision. My body was getting worse and I couldn’t live anymore in that state knowing there was treatment I could try ((THIS IS SOOO ME!)). Now my neck definitely feels safe, secure, and supported. I love my rods, they have saved me.
Sorry this got kind of long. Please feel free to ask anything. I will try to respond as soon as I can.
I guess my main advice is to trust your gut. You know your body better than anyone.
Take care,
Ave
TRUST IN MY GUT!!! Thats all I can do...
Last night I prayed myself to sleep asking God to please reveal himself to me. To let me know what the best choice is for me. I am so weak inside and hide it all so well but I am ready to break down...
I have such an amazing support group I truly couldn't ask for more from them but I AM WEARING SOOO THIN...
::Giving way to that familiar ill::
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