Just my thoughts...

I've had a dull continuous headache now for a little over a week. I try to ignore it to pretend it's not there, but it wakes me up at night to remind me of its presence. I have jam packed the last few weeks into fun with my family in hopes of making up for all the lost time over the summer, but there are moments that I fear it might be catching up with me.

The weather here has changed with the coolest temps we've had this season. This is never good news for a migrainer. But instead of feeling too sorry for myself, I'll enjoy the pumpkin my husband carved and the s'mores we can now make.

Hard to believe that the 5 year anniversary of my surgery is coming up. In many ways it seems like I've felt like this forever. But in many ways the surgery seems like a dream.

When prayers are unheard... Good deeds go unnoticed... And you wonder, God, where ARE You?

Isaiah 58

¹ Cry aloud, spare not, lift up thy voice like a trumpet, and shew my people their transgression, and the house of Jacob their sins.

² Yet they seek me daily, and delight to know my ways, as a nation that did righteousness, and forsook not the ordinance of their God: they ask of me the ordinances of justice; they take delight in approaching to God.

·       Wait just a second. God is speaking to… “saved” people??? 

³ Wherefore have we fasted, say they, and thou seest not? wherefore have we afflicted our soul, and thou takest no knowledge? Behold, in the day of your fast ye find pleasure, and exact all your labours.

·       Hummm… They sound like pretty “saved” people to me to be fasting and afflicting their souls.  But they’re saying God’s not seeing what they’re doing? He’s about to answer why. Ever felt that way?  I know I have.  I pray, I go to church, I'm a Christian.  And yet, here I am... sick, in pain, again.  I've asked myself, 'What's the deal'?

⁴ Behold, ye fast for strife and debate, and to smite with the fist of wickedness: ye shall not fast as ye do this day, to make your voice to be heard on high.

·       So the prideful part of me wants to puff up and say, wait just a second here!  This no longer is talking about me.  Or is it?  I had to examine myself.

 

•  But wait, what kind of God - was my next response. 2 verses. Hebrews 12:6 "For whom the Lord loveth he chasteneth, and scourgeth every son whom he receiveth." and Proverbs 3:12 "For whom the Lord loveth he correcteth; even as a father the son in whom he delighteth."

• And so God asks, rightfully so, what is a fast anyway? Listen:

⁵ Is it such a fast that I have chosen? a day for a man to afflict his soul? is it to bow down his head as a bulrush, and to spread sackcloth and ashes under him? wilt thou call this a fast, and an acceptable day to the Lord?

• It's like He's saying, did I ask you to afflict your soul?  Meaning who cares that you go through your little motions.  You go to church?  Big whoop.  You pray?  You fast?  You tithe?  Okay, let's throw a parade.  But listen, what kind of fast did I (God) choose?

⁶ Is not this the fast that I have chosen? to loose the bands of wickedness, to undo the heavy burdens, and to let the oppressed go free, and that ye break every yoke?

⁷ Is it not to deal thy bread to the hungry, and that thou bring the poor that are cast out to thy house? when thou seest the naked, that thou cover him; and that thou hide not thyself from thine own flesh?

·       *Hard swallow* Now my mind is whirling.  

• So then if we fast “for real”, guess what happens?

⁸ Then shall thy light break forth as the morning, and thine health shall spring forth speedily: and thy righteousness shall go before thee; the glory of the Lord shall be thy reward.

⁹ Then shalt thou call, and the Lord shall answer; thou shalt cry, and he shall say, Here I am. If thou take away from the midst of thee the yoke, the putting forth of the finger, and speaking vanity;

¹⁰ And if thou draw out thy soul to the hungry, and satisfy the afflicted soul; then shall thy light rise in obscurity, and thy darkness be as the noon day:

¹¹ And the Lord shall guide thee continually, and satisfy thy soul in drought, and make fat thy bones: and thou shalt be like a watered garden, and like a spring of water, whose waters fail not.

·       Do you realize what this means?!?! When you fast, no longer do you feel like God doesn’t see! When your soul is afflicted, no longer will you go around feeling like He doesn’t care.  When you cry out to Him, no longer will you feel like your cries are going unnoticed or unheard! Oh but His goodness doesn’t stop there!

¹² And they that shall be of thee shall build the old waste places: thou shalt raise up the foundations of many generations; and thou shalt be called, The repairer of the breach, The restorer of paths to dwell in.

·       Not ONLY will He answer your prayers, but then He’ll heap on promises of wondrous proportions on top of it!  WHAT?!?!?!  What kind of God IS this?!?

·       Ephesians 3:20 –  ^“Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us…”

¹³ If thou turn away thy foot from the sabbath, from doing thy pleasure on my holy day; and call the sabbath a delight, the holy of the Lord, honourable; and shalt honour him, not doing thine own ways, nor finding thine own pleasure, nor speaking thine own words:

·       Again, He tells us look guys, stop trying to do your own thing, stop trying to be the boss, stop living selfishly, stop trying to just please yourself, please quit talking however you want to talk (and this isn’t just cursing as good “saved” people like to think, but also gossiping, or complaining, or being negative, etc).  And if you will just chill with all that because:

¹⁴ Then shalt thou delight thyself in the Lord; and I will cause thee to ride upon the high places of the earth, and feed thee with the heritage of Jacob thy father: for the mouth of the Lord hath spoken it.


I thank God for His Word, even if it hurts. Even when it's not what I want to hear. Because I know He only chastises those He loves! He loves me. He wants the very best for me, better than I can want for myself! And it is not only His desire to answer my every prayer, and heal my every infirmity, but to do exceedingly and abundantly MORE than I could ever even imagine. He is great and marvelous and I want to delight in Him - it's the very least I could do! I want to honour Him in all my ways and not just say it. Like any relationship, saying "I love you" isn't enough. You have to actively LOVE. And that's what I want to do, God, I want to actively love you!

 

What's reflected?

I had a friend that I'd made through blogging named Cliff. He was also fighting with a brain tumor, but sadly the brain tumor won that battle. Once Cliff said something to me that I will never ever forget. He'd said that it amazed him that I didn't give up on God.

Yesterday, this same thought ran through my head as I thought about just how blessed I am. Most 'great' thoughts come to me in the shower, and yesterday was no exception. However, something else was also going on in there. A great battle... with nausea. In the last few weeks, I've felt this crushing sea of nausea like never in my life. I have to force myself to eat and even this morning, at 4:30 AM, the nausea woke me feeling like a storm was raging inside my stomach. I've spoken to the doctor about it and he thinks it's a combination of the medication I'm on (one of the meds has nausea as a nasty side effect) and the continual lowering of my CSF). I am taking ANOTHER medication to counteract with the nausea, but I'm not convinced that I see any real difference.

Anyway, I digress. So I'm hobbling out of the shower, feeling like I need to hurl, and dumbfounded by how great God's been to me all at the same time. I guess that might sound odd. I mean, when coupled together, it doesn't sound like God's been that great at all, right? Ppppsssttt!!!!! Do you have ANY idea how easily it would have been to write me off? Numerous times?!?!?!

Let's look at this last time. A normal head pressure is 14.5-15 ml... Mine was 33 ml. That's comatose high! That's head explode high. That can kill you high! And the only problems I have is some nausea, a headache, and some dizziness? THAT is a blessing!! It seems like I've been hospitalized umpteen times between now and the brain tumor, but isn't it a miracle that there is STILL brain tumor remaining in my head that hasn't grown in the least little bit. Nadda. After 5 years, it is just where the surgeon left it. I know this because I had my MRI read yesterday. THAT is a blessing!! Or how 'bout the whole brain tumor thing. I can never forget being told I could die, or end up a vegetable, or unable to ever walk again... at 24... But look at me!! I'm blessed!

It's so easy to get discouraged. I can get wrapped up in a pity party in a hurry because I get blinded by me. I just have to step out of the way. It's not about me. This world is much bigger than me, and as my Mom used to remind me, it doesn't revolve around me. God has designed my life "wonderfully and fearfully" for a reason. I don't understand His reason, but I don't have to understand to trust Him. One thing I know to be true, He seems to want me around for awhile. (-; Like the author of a novel, He could've written me off easily. I mean, He had at least 2 great opportunities, but He chose not too.  Instead, He chose to let me get better. Took some time, took some tears, but even in that I've gotten so much peace and comfort that I would have never gotten any other way.

So yeah. My life like it's been, hard as it's been, has been richly blessed. I just hope that's reflected out to everyone that peeps in.

Nothing more validating than knowing you're not looney.

Update on Me

So I've been doing a lot of whining about my headaches. I have been feeling like such a wimp. I mean, who can't deal with headaches?  Oh, but they've been awful. They were keeping me awake at night - EVERY night. I couldn't think straight. I had gotten clumsy. I was walking into walls. Dropping things. I couldn't tell if it was because I was just so exhausted or IF it was something more... My relationships were being affected - negetively. All of them. I'd missed work, even one day not showing up when I was on the schedule because I could have sworn that I wasn't scheduled. (This is NOT characteristic for me and I was/am mortified.) I'd missed a lot of church. Missed a lot of family/friend gatherings. Missed a lot of LIFE.

But the Monday before Labor Day, I had a doctor appointment and I told my neurologist just how miserable, frusterated, and exhausted that I was. AND I told him that I thought I needed to go to the hospital. Even though I have been a "frequent flyer" at the ripe ol' age of 29, throwing around this option isn't something I take lightly and he knows that. He took me seriously and within minutes had me orders to have me admitted. *sigh* I'd been doing SO good for SO long... So this was a bummer... But I'd been trying to muscle through those headaches since June and I was NOT winning.

So on Aug. 27, there I was getting a name bracelet slapped to my wrist and a bag of IV fluids hung. First they drew a lot of blood work to run lab tests. That is pretty standard. They also took a urine sample to get lab tests from that. My lab work came back pretty beautiful. I was actually sort of shocked with how good it was. Forgive me, I might speak "nurse talk", but my H&H (hemogloblobin and hematocrit) were perfect. I was thinking they might be a little low which might explain the clumsiness, but nope. Perfect.

Meanwhile, I'm able to get some pretty powerful pain medication in my IV, and it did help for about 2 hours, but then once it wore off my headache was just roaring back. It was awful. I thought my eyes were gonna explode out of thier sockets. Also, something troubling me a little more, was my vision. My left eye had become extremely blurry. My husband and others said it even looked "lazy".

My days are sort of blended together, but my doctor ordered an MRI, but the problem was getting my pain to where I could tolerate the knocking and beeping of the test. I was already laying in a dark room with sunglasses on! LOL When we finally got that the results showed a "severe sinus infection". Now the only initials after my name are RN, but that just didn't add up. I had not run any fever. Remember my beautiful lab work? That included my WBC! They'd be all out of whack, wouldn't they? I had no drainage. A week ago I did have a sore throat and ear and took some Nyquil, but... I don't know... I didn't see my doctor that night and they started me on an antibiotic by mouth. My nurse also talked about discontinuing my IV fluids, but my heart rate kept dropping too low. Working in a hospital, I know that oral medications and discontinuing IV fluids means it's time for you to go. But I just still didn't feel comfortable. 

A "severe sinus infection" with NO symptoms since June? And what about my vision? To complicate matters further, a couple of months ago, my mom was diagnosed with cryptococcol meningitis.  Now that type of meningitis is NOT contagious, BUT, for some reason, if there's a freaky thing that can happen then it happens to us... so what IF lightening struck the same family twice. I mean, she had a lot of these same symptoms and was first misdiagnosed with migraines... Long story short, I was just really uncomfortable with the thought of leaving and felt like I needed another test called a lumbar puncture performed.

When my doctor came in, I thought for sure I'd have to sell him on it, none of my family thought that I needed it. They all thought mystery solved. I was over-reacting with the whole L.P. thing. But my doctor right away said that he wanted me to have it done and he explained all the reasons that he had, which were all the questions that I had! See! I'm NOT crazy! (-; He had barely left my room and my nurse came in and said that he wasn't joking around. He was at the nurses station on the phone with the guys downstairs getting it arranged for me to go right down. In no time, I was down getting my L.P.

Think about your skull for a second. It's a closed space, and there's not a whole lot of room for much more in there, right? There is stuff called cerebrospinal fluid (CSF) that covers your brain and spinal cord, but still there's limited space so you can only have so much. Normally you have about 14.5-15 ml in your brain. The doctor that did my L.P. talked to me the entire time and knew that I was a nurse. He knew that I was curious and told me right away what he saw. So first he saw clear fluid. This is good. Cloudy fluid would be indictive of infection, but of course the fluid had to be sent off for testing to be 100% verified. But then he said the pressure was way up. It took him a second to measure it, but when he did mine came back at 33 ml. I had 33 ml!!!! No WONDER my eyes felt like they were going to bulge out of their sockets! They were!

**Pat on my back here for listening to my gut, or nursing voice, or whatever and making sure I got that L.P. and finding out what was actually wrong!**

So, I stayed in the hospital until Sat. Sept. 1 - 6 long days. Then I came home and thought that I was going to die. I wanted to die. I think I must have had a spinal leak from the L.P. because as long as I laid down real still, I was 'ok'. I mean, my head hurt, but it was tolerable. But if I sat up to eat, drink, use the bathroom, etc.... Oh it was HORRIBLE! I'd vomit, get dizzy, my head hurt worse that anything I've ever felt. It was awful. It was the weekend though, so I knew I'd have to go to the ER and I didn't think I could bare sitting in the ER for hours. and Monday was still horrid but it was Labor Day so I'd still have to do ER. By Tuesday, I had started feeling better when I sat up and I actually ate quite a bit. Then by Wednesday I took my first 'real' shower in well over a week!!!

My current prognosis: During the L.P. they removed 3.3 ml of CSF, still leaving quite a bit. But the problem is, removing too much too quick causes just as many problems as having too much. Right now I'm taking an antibiotic. Not for the "severe sinus infection" because really they think what they were actually seeing is my "scrunched up brain", but because there were a couple of WBC's in my CSF. Then I'm taking prednisone. It does 2 things. 1) Makes you fat 2) Decreases inflammation to encourage drainage of CSF. Next I'm taking 2 different drugs that slow down the production of CSF. And a nausea pill cause while all this is going on my equillibrium is out of whack so I get dizzy and nauseas. And a sleeping pill cause it's import for my brain to be getting adequet rest. I don't know. There's a whole heap of pills! My husband had to buy me a pill box. :-(

Today I feel okay. God's been good to me. I'm just really tired. I sleep a lot. But I can see a light at the end of the tunnel, and that's always a good thing. Hope that answers everyone's questions. Thanks for all the calls, cards, texts, love, and support! Your prayers mean EVERYTHING to me and I definately feel each and every one of them!

Fun day.... HA!

I was off today and since it's been well over a month since I've done anything 'fun' because of how crummy I've been feeling, I thought I'd go out and give it a shot. I showered and did my hair all cute. Put on some make up and even a cute out fit. Keep in mind the whole time I was doing my best to ignore my head. I went to a store to do a little shopping, but after walking around aimlessly in the store for about 30 minutes or so, distracted by my head, I retreated and came back home to the safety of my couch. Ho-hum.

Faith, lying, or realism?

So still not feeling well. At all. Can't get in to see the neurologist until the 27th. Blah. Anyway, Saturday I got to spend the day in and out of conciousness on the couch. It was really quiet lovely. :-( It was my poor kids last weekend before school started, and I couldn't even pick my head up off the couch. And when I did utter something, it was something grumpy like, "Stop being so loud!" or "My head's going to explode!" or even "I wish I'd just die". (I know, I know, it's shocking that I said such a thing! LOL)

In my moments of cohesive thinking, I was feeling something of a pity party. What a bummer to spend an entire day off wrapped in my own world wanting to saw my head off. How sad to be missing out on living LIFE. I could go on, but I'm beginning to hear violins... (-; Waa, waa, waa.

So, Sunday, I was determined to go to church. Woke up still not feeling good, but well enough to pick up my head and take a shower. However, my head did throb enough to feel the need to prepare for the hundred or so people that would all talk at once and the music that would play and the clapping... oh the clapping... My preparation meant a pain pill.

And so in marched my lovely little family. The service was all about miracles, something that I firmly believe in. Some might find that funny, here I am, sick, and yet still totally believe in healing. Yet I do. I have been healed before. And I do believe that God can heal me again. But I'll save my "realism" thinking for just a second.

So the service was great, loud, but great. Afterwards, a lady was walking out and grabbed me and said, "Don't you just feel so much better?! You've been prayed for missy." Now I know that the appropriate response would have been a simple 'thank you' followed by a polite smile. But I'd taken those pain medicines earlier and I'm choosing to blamed them because like word vomit out popped, "No. No, I really don't." She looked at me sort of shocked and then argued with me! She said, "Oh sure you do!!" All I could do is think of myself laying on the couch Saturday... And how at that very moment, my head was pounding and I was griping the pew in front of me because I had no balance. My head hurt so bad it felt like my brain was trying to escape from my skull, and yet here this woman whose name I couldn't even remeber because I can't seem to remember anything right now was trying to argue with me and tell me that I did in fact feel better? So, maybe a little rudely, I replied something to the effect of, "No. I feel awful. Maybe one day God will answer our prayers and touch me, but thus far, my headache's remain." And then I just turned stumbled away.

Of course now I feel wretched. Obviously she was expecting me to tell her how fantastic I felt. But that would have been a lie. BUT... would that have been faith??? I don't think faith is lying... I think faith is saying, listen God - THIS is where I am, but this is where YOU can take me... Right? Here's for the realism part, He may or may not. And that's not lack of faith, that's just real. He didn't heal everyone in the Bible, and He may or may not heal me.

So, in the meantime, I've just got to get a grip! Lashing out on poor unsuspecting souls isn't in my charator and only makes me feel bad. Sure, I'm annoyed, but it doesn't help them to understand and it doesn't make me feel any better.

I've heard it all!

Yesterday, a well meaning brother, approached me at church to give me some (a-hem) advice. He let me know that I just couldn't claim these headaches. He believed that if I just didn't claim the pain then I wouldn't have it... *crickets*

Also in this week a sister, meaning well I'm sure, told me that I just needed to step out in faith and attend a women's event and "give the devil a headache". This was texted to me when under the influence of pain medicine I couldn't lift my head off a pillow, nor stand water trickling over my head to wash my hair, much less drive myself to the church and hear a bunch of women chattering.

*SIGH*

I have said this before, but while I am no Job, there are definately times that I can relate to him. Remember when his three 'friends' came to give him some 'advice' not having any clue what the heck they were talking about in the first place? Yeah...

You know, I know that God works for the good of those that love Him and are the called... I'm not worried about being in pain, but it IS rather inconvienient. I have missed days of work, church, my family, etc. I've become somewhat of a recluse holed up in my house with not much of a social life. I AM battling depression and exhaustion from being kept awake or woken up with a head on the verge of explosion, but I know without a shadow of a doubt that God has a purpose and a plan in it all. I do NOT accept that I have somehow brought this on myself. Denying that I can't walk straight isn't going to suddenly make my head clear up. Forcing myself to attend things or do things to please other people isn't going to heal me, cause trust me - I DO that. Several days I have to FORCE myself out of bed to play mommy and wife because how fair is all this to my family? I force myself to church, to work, to the mundane tasks like grocery shopping - but no healing yet.

One thing I know is that I am able to relate/witness whatever you want to call it to others batteling health problems. Now I'm not talking about people that have stumped their toe. I'm talking about people that have suffered with health issues for years, seen their lives change before their eyes, and had no one to rely on but God. You know why? Cause I've been there!! Walked through that fire! Like a Hebrew boy, God and I are still dancing in THAT flame. What annoys me is the people who, meaning well, try to offer up advice having no idea what they are talking about. I'm sure that God has allowed them to face things in their lives that they can relate to others about that I never will, but this... well, this I just wish they would give me NO advice rather than BAD advice! LOL

But, really all I'm doing right now is griping and complaining and really what I need to be doing is asking God for grace. Thus far He's done a great job of supplying me with enough to bite my tongue when people are a wee bit ignorant, and I just caught myself getting a little impatient yesterday. So forgive me, God. People never know what to say so they often say the wrong thing. I know that none of these people mean any harm, and help me to never be offensive with my tongue.

It could be worse...

Headaches are bad. Real bad. But at least I haven't ripped off my head yet and I've been able to get started on my medicine again. It usually takes 2-4 weeks to get in your system, so that stinks but 3 days down!

YAY for partial fills!

I must admit, sometimes I'm not real bright! LOL Today my mom suggested that I get my medicine partially filled to lower the cost. Duh! Why didn't I think of that? As I type my pharmacy is cutting my prescription in half for me to pick up later! HOORAY! These wretched headaches will quiet their roar in just a few short days. :-)

Come on August 1!

So my husband was laid off work a few months ago and we lost our insurance. I've enrolled in mine, but it doesn't begin until Aug. 1st. The bummer is that I ran out of my medication a couple weeks ago. At first I was okay and got excited thinking that I no longer needed to take medicine every day, a couple times a day. But for the last week or so I haven't been okay. Boo! I've got a couple pain pills left so hopefully that will get me through work. *sigh* And this too shall pass...

Just another day...

Yesterday was a 'headache day'. It sucked. I missed church and laid around sleeping in a pain pill induced fog all day. Lovely. My husband said something that is still bouncing around in my head. He'd said that we had a big day on Saturday and it must've just wiped me out. Really?!? We just did what normal mother's do... And it wiped me out? Blah!

In other news, I've left the job that I thought was my "dream job". I'm still nursing, just in another department. While I like the job a lot better (I get to pee during my shift, take lunch, AND I leave before 8:30!), now I'm just left with confusion as to what I want to be when I grow up. Waaa! (-;

Haven't had an MRI in quite sometime. My neurologist doesn't seem to think it's necessary? I don't know if he's right, and maybe I'm just obsessed... Afterall, the tumor IS slow growing... But there are days that my balance is all wrong, and I run into walls several times, or my memory seems cloudy, or the center of my leg hurts with pain that radiates down my left leg and I can't help but wonder... is IT back?

Delighting myself in the Lord...

Psalm 37:4-6 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
Commit thy way unto the LORD; trust also in him; and he shall bring it to pass. And he shall bring forth thy righteousness as the light, and thy judgment as the noonday.

Adjusting as a new nurse hasn't been easy for me - at all. In school there is brief talk about how reality can be a little harsh, and I guess I should have really listened to those talks!

I worked so hard to get through school fighting not to give up or give in and it was so hard, but I seemed to know what I was fighting for. I wanted to help people. God has been so good to me and He's blessed me through so much that I just wanted to give back. I want to spend the rest of my life doing whatever I can to help others in whatever way I can. And yet, here I am feeling like I'm just doing terrible! LOL

I guess I didn't expect dealing with all the patients that would be unhappy no matter what I do; or being chewed out by doctors until I want to crawl under a rug; or nearly always being unsuccessful at getting IV's started after my patient's are already in pain; or running around like a chicken with it's head cut off trying to get everyone's meds passed out in time, and orders checked off, and cleaning up room so-in-so's vomit, and helping room-so-in-so to the bathroom, all the while getting my assessments done and charted in a timely manner and making sure I'm getting discharges and/or new admits done ASAP.

Some of my 'cheerleaders' tell me that my problem is that I'm just too hard on myself. That could bare some truth... And if so, then how is that corrected? I've always thought that I was self-motivated, but now I'm being to think that I'm over-bearing! LOL

Ah... The joy I felt on my first day has dwindled away and in its' place is this horrid stress and worry. I'm constantly afraid that I'm doing something wrong or that I'm about to make some awful mistake, but in reality, isn't that part of learning? I mean, I don't WANT to make a mistake, but at some point, I will, and that is how I'll learn - right?

Looking at this picture makes me a little sad. My mom had come to see me on my first day at work and brought me flowers. I was so happy... so excited... so confident! I want to feel like THAT again! However, I have realized that I need help. I can't - so I'm gonna need a little help. I'm going to delight myself in the Lord... And I'll begin by counting my blessings.

1. I had this job before I even graduated from college! It was held just for me and it was my DREAM job. It's where I was a patient myself before going to Emory for surgery.

2. I have a job. There are many of my classmates that graduated with me that STILL don't even have jobs.

3. I'm getting to know everyone on my floor, including the physicians that we regularly deal with.

4. I really like my director, manager, and educator.

5. I've been leaving before 8:30 at night the last couple of weeks & taking a lunch! LOL

6. When I get to work, I stay really busy (which I like).

7. Our floor has the nicest patient rooms in the hospital.

8. Our floor frequently scores high on patient satisfaction surveys.

9. I get to work days and am off on most weekends.

10. We have good secretary's which is wonderful for us AND our patients/family's.

So, God, thank You for the positive's and help me to focus on these things. Help me in my weaknesses and fears. Thank You for surrounding me with such a good support system and carrying me through! Amen!