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::

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

::Giving way to that familiar ill::

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::

Let's fuse your skull to your spine... No biggie...

Ahhhhhhhhhhhhhhhhhh!

So here is my latest news of my medical journey :(

This past thursday I met with my Neurosurgeon and we talked about a lot of stuff... (Sorry this post is late but I was having a hard time dealing with all this new information...)

Below is one of the things that we talked about...

Craniocervical Fusion: Craniocervical fusion is performed for spinal instability. 

An unstable spine means that the integrity of the spinal column has been compromised. Movement of the vertebral bones and discs becomes abnormal. 

My skull is not supporting holding up my head all alone. It is most likely due to the amount of skull taken out during the lower cranial decompression surgery. This is causing a lot of pain in the lower part of my head and my body to ache more. It's causing a lot of pain and pressure on my spine from top to bottom. 

The fusion usually involves several adjacent vertebrae and may include fusing the upper cervical spine." From cranial (head-skull) to vertebrae C4 or C5 fused together as one. 

Dr. Chandler and Dr. Deutsch think Craniocervical Fusion may be an option for me due to my spinal instability.

Scariest part is  that I would not be able to turn my head at all. Some people have said that they have "some" movement since the surgery, but it is very limited. 

(Depressing...)

But... Good news FOR NOW is Dr. Chandler thinks our best bet to deal with this for now is to play around with medicine...

AND I say Thank GOD! I think this sounds like a great IDEA... 

Pray for answers is all I can do daily... And dwell. Which is so sooo not good but my mind is so lost...

I found out a few people have gone to New York to a special Chiari Institute and they have GOTTEN SO MANY ANSWERS...

Now I just have to pray for my way there!

http://www.chiariinstitute.com/

Dr. Chandler also decided to up my medication. Neurontin. From 600mg to 1200mg... Yikes. Today has been my fist day... I went from 600mg to 900mg... Tomorrow I will start the 1200...

Neurontin is an anti-epileptic medication, also called an anticonvulsant. It affects chemicals and nerves in the body that are involved in the cause of seizures and serious chronic types of pain. 

::Giving way to that familiar ill::

HOPE.

Today has been truly unbearable (pain wise and faith wise). As I sit
here waiting to be seen by my neurosurgeon I ask myself over and over
"are any guestions going to be answered"? They sure do never seem to
be. They just seem to go into that list of symptoms on my nurses
computer and lead to test after test... WELL actually I guess I would
say these past few months have been pretty unbearable. But It seems to
be getting worse and WORSE... My symptoms have been so persistent. My
functioning has been non-existent (this could be the medication that I
take that HELP'S deal with the pressure in my head causing horrific
head pain, THE HORRIBLE ACHES and PAINS I deal with all over my
body)(But the medication is well worth NOT screaming in pain). The
misery is so surreal and blah. It reached that point again...The point
where I just can't take it anymore. THE rage and despair just take
over me. I was a person possessed. I know this has put such a strain
on my family and POOR HUSBAND. I want and WISH this all could just
stop. To go away! I just feel so terrible for my family. My loved ones
are the only reason I haven't left this world much sooner (and yes I
mean that and only my loved ones truly know that). BUT I have to
believe that there is nothing within me that would stop me from giving
up, completely and utterly (thats where faith steps in). With out fait
how else could I go through all these years of intense distress...Plus
years of pain? I have no choice but to HOLD ON! I have no idea what I
would do without my support. They are the only reason I feel like I
can hold on (like I said before).

It's just that sometimes, it feels like a game of tug of war. My body
is constantly telling me that something is horribly wrong. But there
is nothing to do about it. Absolutely nothing. And it's so frustrating
for those around me to not be able to do anything to help. But the tug
of war is in me. I just want to give up and let go of that DUMB ROPE!
I want to so bad. I just don't know how I am going to face another day
(which I've said 1,000 times to myself before). But I can't give in,
because I could never hurt my family that way, after all they've done
for me.

But when will it be enough? When will I finally have gone through
enough? How bad does it have to get before they'd let me leave? LORD I
NEED YOU!

But...I know the answer to this question. I don't get to leave. It
will never be an option, no matter how unbearable my illness becomes.

I guess, on days like today, when I am so completely out of control, I
wish I could just call 911, have an ambulance come over and
tranquilize me. That is what I need just a week of a coma. The
medicine isn't doing it's job anymore or at least right now. My cries
out to God are me asking him why he has left me here so cold and all
alone. So sad and helpless. So scared and not loved. But I have to ask
myself WHAT HAVE I DONT TO SHOW HIM LATELY THAT I LOVE HIM AND THAT I
CARE FOR HIS WORD. I must beleive that I have stength to GO ON. I have
for all this time... But it is wearing so THIN...



::Giving way to that familiar ill::