Be Still (*sigh*)

"Be still and know that I am God"
~Psalm 46:10

ANOTHER appointment with my neuro-surgeon on Monday. Hmph! Not like it's going to reveal anything (please excuse my cynicism).

Headaches, nausea, vomiting. This is what I have dealt with since early teens. Surgery, medications, different pillows, c-pap, elevating the head of the bed. I've tried it. Sure, it works for a little while. Short term solutions.
Over the years I've been steadily losing hope the doctors will ever find a permanent solution.

Upon reading the above verse, a still small voice inside of me promted me to do a search on the phrase "be still"
Exodus 14:14
The LORD will fight for you; you need only to be still.”

Mark 4:39
He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm.

Lord, calm this storm inside!

Psalm 83:1 (NKJV)
[ A Song. A Psalm of Asaph. ] Do not keep silent, O God!Do not hold Your peace, And do not be still, O God!
(All I seem to be getting from Him on this particular situation, silence. Lord, what is the lesson here?)



TODAY's DEVOTIONAL
"Be Still" I hear Him softly say
"Be still, lay all aside" (time out!)
He who made the universe stoops down
and gathers up my cares
(I am definately weary.....more like, DONE! Eleven years of college, it oud be nice to use it. To not depend so much on SSI.
"Be still" He chides again
His work begins within my weary soul
"Be patient. In quiet stay.
Listen to me" (Lord, I am listening!....or am I?)

Though pressed on every side
I clear my heart and mind
In timid voice and heart
I lift to Him my praise

How quiet His presence
How healing His words
In hushed awe, I listen
I savor each one

My will He bends (RA's Take My Will)
My heart He sweeps clean
My strength He renews My soul He fills to overflowing (PROMISE)

He teaches through His Word
I heed what He tells me
I stand and give Him praise
Together we go forth to serve

Shunt Valve Replacement

So my last dr. appointment I had an interesting development. My parents are downright convinced my shunt is causing all these problems. What with the headaches, nausea, vomioting I've been experiencing. I on the other hand, don't quite know WHAT to think anymore. I am quickly losing faith in anything we try. It only seems to be a temporary fix.

My neurosurgeon made a slight adjustment to the setting of my shunt (using a small magnet). The valve in my shunt controls how much cerebral spinal fluid is flowing in the brain. The MRI machine, because it uses a magnet, could mess with the setting just a bit, but the last time they did one the tech didn't think it necessary to do an xray to double-check (I should have said something, dang NOW I think of it!). My neurosurgeon made a slight adjustment anyway, even though it was only off by a tenth, but the slightest adjustment COULD make a difference with me, you just never know.

Three x-rays later as it took a bit to get my HEAD adjusted correctly so they could see the valve, aaaaand he has me in x-ray once again..... this time he is in there with me and the x-ray tech to make sure it is done exactly how he wants it, so that he can see the valve in question. After the final x-ray I look over as he is walking back into the room. He has a dumbfounded look on his face, and my jaw drops. He couldn't believe it, but the valve was broken. HOW that happened is a mystery to all of us. (I've bumped my head on occassion, but I didnt think anything that hard). I prayed the night before that we would find something, but don't think I was quite ready for the answer just yet.

A second appointment on 7-29-10 confirmed surgery. Unfortunately, a date not be set until a few weeks later. It seems that calling surgery scheduling they could only gurantee it woould be in the next six to eight weeks! WHAT?! No Way!!!!! Nuh-uh, NOT waiting that long, sorry! They said I could be placed on the cancellation list, if somoen's surgery just happened to be cancelled for any reason I could be up for that date. Whew! I did just that. Then it was a phonecall to my neurosurgeons office asking if he could do something to bump up the date. I didn't hear for two days. Another phonecall, and I left a voicemail. The next day I get a call from surgery scheduling. They could schedule my surgery for August 16th. Yes, I'll take it! HO but the two-week wait to get it done was going to be excruciating. I SO want to be done with the headaches already! ("I want it done...yesterday!")

What was originally going to be a 45 minute procedure under local anesthetic turned into a two-hour suergery under general anesthetic due to positioning me just right and I am sure other things too (My back and hiops just don't like to cooperate sometimes).

They gave me the sedative....aaaand thats the last thing I remember. No wheeling into the OR, getting me on the table, putting me underrr... nuthin'. They shot the sedative into the I.V and the room slowly started to spin. I'm smiling, LOL! Annnnd she OUT!
I remember waking up in recovery. I did not want to wake up. It felt good to sleep. I vaguely remeber being wheeled into my room.

Food was just mediocre, nuthin special. One of the reasons I couldn't wait to get out of there! Would you honestly feed your family that crap?! I immediately missed my cousins cooking.

The nurses were borderline annoying. Why did I bother giving the hospital a medication list? The nurses almost never got it right. Oh the right medications yes, but the wrong doses or times to be given. One nurse tried to refuse to give my heart meds. She said my bloodpressure was too low for me to take them. It took me four times to convince her they were not for my bloodpressure, they were for my tachycardia. And yes, my bloodpressure is a bit on the low side becasue of it, this we already knew. It is well monitored. (I think my bloodpressure was goinG UP at this point) When I was discharged later I foudn teh list, at home on my desk along with another paper I was supposed to give the hospital. Haha, Oops. Maybe I filled out another one for them. Shoot, I can't remeber.

Only took pain meds once while in the hospital, and after that it was 2 Ibuprofen before going to bed the night after surgery.

It has now been three days since surgery, and I have not been woken up by a headache.

GLORY!!!!!

Headaches

Why post about this? I don't know exactly. Writing tends to help me sort through thoughts in my head; whether they be thoughts I wanna remember, such as a great experience I just had, or sorting through emotions of a difficult situation. I guess this is the latter.

God, WHY?

I am sick and tired of being sick and tired!

I have struggled with headaches/nausea/vomiting for, oh it's gotta be at least off and on twenty years now. It started around the time of Jr. High, give or take a few years. I believe it was just the vomiting at first, and so we saw doctors about my stomach. We then tried countless medications, some working for only a short time before doing nothing, others doing absolutely nothing, still others making me ten times worse. Yikes! The problem just kept getting worse. I believe at one point a doc said something about too much stomach acid. After a swallow test another doc noticed a vein in my neck near my esophagus making swallowing difficult.

I've gone through so many doctors giving one diagnosis after another. One that had me laughing....false pregnancy. ME: "HAHAHAHAHAA! Yeah Right! For NINE YEARS?!"
One doctor suggested it was stress (duh, hello? Did I not mention school (Jr. High, HS, College....disability on top of that?) I went in for a sleep study because it sounded like sleep apnea to one doctor. They first tried a medication that was supposed to put more oxygen through the bloodstream. That one left me with a severe tingly feeling in the left hand, face and lips. Scratch that! (that was rather spooky) I was pulled off of that medication. Enter the evil CPAP machine. Now I know what an elephant feels like! You ever tried one of those awful things? A small mask over the nose that forces air into your sinuses, and if you happen to open your mouth you feel like you are gasping for air! Well, I couldn't keep it on my face for the life of me. Seems after a few weeks, months....I would take it off in the middle of the night and I would not even remember doing it. (Yes, I sleep that hard, just TRY and wake me up! If you suceed.....DUCK and RUN for COVER! lol!!! Just kidding, but it is still not pretty. Just ask my mother)

I have had numerous surgeries to try and aleviate the problem headaches;
Hydrocephalus (water on the brain) and shunt placements, removals, revisions, a repair of a chiari malformation (portion of skull pressing on the brain), clearing of impacted sinuses (impacted with fluid to the point of near rupture), removal of a dermoid tumor (mass of hair, skin and fat from previous surgeries).

The headaches always came back...and with a vengeance!

Muscle relaxers - worked for a short time, as did everything else. I switched medications a few times, finally finding Amitriptylene, a God-send. Or so I thought up until a few weeks ago. Now I am not so sure. Maybe it is working some still, but definately NOT enough! Because of another medication I was taking for a short time, I was cut back to half a tablet becasue the two meds were in the same family and could react. I was nervous about cutting back. But a whole tablet was making me too drowsy, to a point I did not want to wake up in the morning and was tired alllll day.

I was recently switched from Tylenol, which was said to be horrible for my liver, to Ibuprofen. I was taking three Tylenol at a time, sometimes three times a day as two were doing nothing for me (Extra-strength for crying out loud). But doc switched me to Ibuprofen, and that was a bit weird. The first time I took two... I felt good, almost TOO good, lol! It sort of made me nervous. I thought it might have been too much (I just seemed TOO happy, LOL!). Now even two Ibuprofen are not cutting it, and the last time I took them three doses in one day did not help.

One of my doctors in Montana (who is a believer in Christ) said something to me that was a bit settling "it could be a combination of things causing them, therefore it could be a combination of things we try that get rid of them". Still, we have yet to find that combination!

Memory-foam pillow - not the fix I was hoping/praying for but I never sleep without it now!

Some time ago we bought me a bed that allows me to elevate the head and the legs.. Although still not the solution, it seemed to help a little. Though today no matter how high I get my head it makes no difference.

One doctor who operated on me for this problem joked he was going to buy a one-way ticket out of town if he couldnt figure out what was going on with me (he never did either one to my knowledge...but he has since retired).

It's crazy, but the pain is primarily on the right side, though its been known to fluctuate; from temple down back side of head and neck, occasionally entire back side of head, rarely is it both sides of head, but it has happened. Like somebeody kicked me in the head or stabbed me with a knife.

Could it be something up with my stomach that is causing headaches?
Eating? What I eat, when I eat? Time in between dinner and breakfast too far apart? I asked the doctor about my stomach causing headaches and all he said was that it could be possible, nothing more. Hmph!

I have had countless CT scans and MRI's done. Why, the most recent MRI came back negative and I was emotional on the way home. I was frustrated! I just want to be DONE with them! My favoreite phrase "I am sick and tired of being sick and tired!" About this time I remembered RA's song "None Compare' and the line "Can You see me in the valley?" Okay, the first time I heard this song it was right before my move back to California, and it fit a little better.

Is this the thorn in the flesh Paul was talking about? I wonder.
Why do I feel He is being so silent to my pleas for relief?!
I want to work. But who is going to hire someone who cannot get up beore 8am and is feeling miserable every morning? So I search for afternoon programs working with children, or volunteer in classrooms only a few days a week, setting my own time schedule.

Lord, I am done!

Life Since Surgery

Eeghad when will I learn to spell-check before I post!? HaHa

My last two appointments the doc has asked me if it was worth it all in the end. My answer - "Sometimes a blessing, sometimes a curse!" lol! That's usually when the tube gets pulled (OWIE!!!!) or the blasted thing gets disconnected from the bag (grrrr!) But yes, it has definitely caused me to be a bit more independent and I have more time in my day for things I enjoy. (Not to mention a slight boost in self-esteem)

Post op appointments have been great though. The healing process is going as expected. The last appointment things were supposed to be changed, but the doc said we could wait another month. They swore me off of Tylenol saying it was bad for my liver, and instead said to take Ibuprofen. Ohmygoodness! :D Way better! I was taking three Tylenol at a time, sometimes a couple of times a day because two were doing nothing for me. I can take two Ibuprofen and be fine the rest of the day. Very rarely do I have to take more than that. The first time I took it and I was thinking I may have taken too much because I just felt TOO good! But now I have not had pain in weeks and now just use the Ibuprofen when I have a headache. (and that's a WHOLE other ballgame!)

I am back at our ladies Bible Study faster than expected. In fact, I think I only missed one study since surgery. The leader as well as those at our table were quite surprised to see me so soon.

I am also back at Gage Elementary as a teachers aide once again. Which is great because the downtime was leaving me emotionally drained. My first day back was so totally awesome. I come wheeling into the classroom where you could hear 25 second graders *GASP* with excitement when they turned and saw Alehe and I. And when I called them back one by one to do some reading assessment with me you could hear them exclaim as they headed my way, "YES!". I SO love my volunteer job!

Speaking of job, my dad said something cool to me just the other day. He picked me up one afternoon and says to me something like " you know, you DO have a job. It's just that you're getting paid by the government (meaning my SSI).

Home Recuperating

Anesthesiologist - "Your gonna feel pretty shitty afterward. Now, I can say this because it IS a medical term." My mout drops, in my thirty-some odd years of goign uunder the knife, I don't EVER remember a doctor using that kind of language. I had to laugh!

Before my surgery I refused to allow myself to get nervous. Yes, even after all these years going under the knife still gives me the jitters. Instead, I am singing 'None Compare' as I am being wheeled into the O.R. I guess I was more nervous about afterward...the outcome, and all that it woudl entail once its been done. After surgery - for some strange reason I came out singing 'Wave a Hand".

I came thru surgery with flying colors. Absolutely NO problems wiht my heart like i usually do (stupid tahycardia). But this time it went perfect. Coming home the next day looked prett promising. Friday after surgery I felt on top of the world. Haha, until Saturday afternoon.....my digestive system decided to shut down for a day and a half :( . Talk about bloated UGH! Somebody quick, stick me with a needle, I wanna POP! I don't even wanna eat. Which they say it was better I didnt if I did not feel hungry.

My cousin sends me a text asking how I was doing, and so I tell her what's going on. Her reply to me --- "maybe you need mexican food to get it going again" (We eat a lot of mexican food in this household).
(My reply to her ---"thats gotta be better than the crap they got here!" I wouldnt even touch one of the dinners it looked so bad!!!)
She texts me a reply again and Jim (her husband)says "Order a chimichanga and two rasp. ice teas" LOL! (a little inside joke)

You never get sleep while in the hospital. Why, every two hours the darn nurses came to make sure I turned on my side to avoid the possibility of pressure sores. ( a few times I told them to "leave me alone, I just got comfortable!" Some came in at 5 a.m. to take blood (LAME!) But they like to have the results on the doctors desks before they come into work a few hours later. How are we patients suppoed to heal with lack of sleep anyway?! Hmmmmmm?

I am now home. The first couple of days weren't bad. But this week has been borderline agonizing as the swelling goes down. I have been feelign a lot more pain this week. Trying to stay away from pain meds as the could aggravate the digestive issue I was having earlier. But extra strength Tylenol seems to be doing the trick just fine :D

In the meantime, I am sick of watching t.v., sick of reading, borderline sick of being on the computer.....and I WANNA be with my KIDDO's!!!! This recuperating thing is taking WAAAAAY to long!!!!!!

I see the doc on Monday. For post-op appointment.