3 days of goodness!

It's the Saturday after Thanksgiving and I've felt pretty "okay" through this holiday!! HOORAY! Thanksgiving was wonderful AND busy. We ate lunch at my mom's, dinner at my in-law's, and then we spent the evening at a downtown tree lighting about 45 minutes away. I was a little nervous about how such a busy day would make me feel the next morning. Sometimes, actually ALWAYS, my headaches are like a bad hangover. If I have any 'fun', then I end up paying for it the next day.

 

But Friday, I awoke with only a mild headache - probably like a 2-3. So, to celebrate, I spent the day out Black Friday shopping with my husband. And I do mean we spent the ENTIRE day out shopping. I was beat when I came home, but happily so. Feeling somewhat 'normal' two days in a row, and getting to partake in 'normal' FUN things is my dream come true.

 

I should clean my house and/or do some laundry, but all I can think of is what other fun I can cram into today with my family while I can. Who knows when I'll be laid up on the couch again. Just thankful that I'm not laid up today!

Day 4 of this headache

Today's Sunday and, of course, all my weekend has been stolen by this headache. It started Thursday night... Friday I took some meds in hopes that I could make it through work, but by lunch time I was about to fall out of my chair so I came home. I hate having headaches.

 

I've become a recluse. Friends that I used to have, are more like strangers. Places that I used to frequent are distant memories. I live on my couch. Surrounded by my walls. In the dark. And cold.

 

UGH!

 

I try to keep positive. I really do. But it's just so much easier to be discouraged.

New Changes

So guess who FINALLY called me Friday... My neurology office! My lab work all was fine, although my ammonia level was at the high end of normal. (A side effect with the Depakote is elevated ammonia.) But since the headaches were no better, and I was having such a hard time with nausea and vomiting, my doctor decided to take me off the of Depakote completely and replace it with Verapamil.

 

Now, I was a little surprised. Verapamil is a calcium channel blocker that is most commonly used to lower blood pressure. I don't have high blood pressure! But after I hung up with my doc, I did a little bit of research and learned that Verapamil has shown to be effective in the prevention of migraines. Here's the catch, I have to take it twice every day... and I already have low blood pressure.  Like, really low... Like 100's/60's... Hope the new addition doesn't bottom me out!

 

On a different note, I was looking up stuff on migraine triggers and foods and stuff. One trigger caught me by surprise. Stress letdown, like after a busy work week or a presentation, often triggers migraines. Funny because I'm out for the count nearly every weekend. And here I just thought it was all in my head. Ugh

 

Oh well, let's see if med change # 5,864,782 will be the one!

Think I'm gonna spew.

Ugh. I feel so nauseous. Not sure which I hate worse: debilitating headache or constant nausea.

Not the day I had planned...

Last week, because I finally became exasperated after staying up all night puking my brains out, I had called and left a message for my neurologists' office regarding the nausea and vomiting that I've been having now for months. I neglected to mention in my message about how I'm blowing up like a balloon and how my hair is falling out in handfuls. But no matter because today her office called me back and wanted blood work today, including an ammonia level.

 

Now I will admit that I quit looking up the side effects of medication ages ago, and as a nurse, perhaps I should be ashamed? But reading all the side effects of all the many medications that I've taken through the years was just freaking me out. As a result, I had an idea that the GI upset was a side effect of the medicine (which is why I waited so long to ever even call her office), but I did not know about the hair loss and weight gain. Nor did I understand why she wanted an ammonia level today. What's my ammonia level got to do with it?

 

Well, apparently, a lot. Ugh.  One of the side effects of Depakote is an increase in ammonia levels that results in EVERY ONE OF THE STUPID SYMPTOMS THAT I'M HAVING!!!! Lovely. It can also lead to reduced attentiveness and response accuracy. I am saddened to say, that I have caught myself doing (or not doing) really stupid things lately. I've also found it very hard to be motivated at work. I just haven't been able to get my mind on work. Not good! Who wants an employee like that around?!?!? I wouldn't!

 

So anyway, off I went to get my labs drawn. The results of them won't be back until the morning. Because of today's events, I missed most of the day at work. I swear, my employer is going to hate me. Anytime I have missed, and it's been a lot, it's because of my dumb head. It just makes me so aggravated. Why, oh why, can't I just be NORMAL? :(

 

Ugh. Don't mind my pity party today. I'm sure tomorrow I'll be just fine. Right now, I'll just fantasize about eating cookie dough... If I wasn't so dang nauseated, that's exactly what I'd do. Cookie dough always makes things better. (;

Side Effects

I am constantly hungry. I'm talking about being waken out of my sleep with my stomach growling. I've also gained a LOT of weight since my last medication switch and my hair is falling out in handfuls. My hair is so bad, that another co-worker asked me the other day if I knew I had a bald spot!!! I was HORRIFIED!!!! :( So I'm bald and fat. Lovely.

 

But I gets even better. I'm nauseated a lot. I actually vomit at least 1 day a week... And I frequently have diarrhea. (I did put a call in to my neurologist about this last week, but still haven't heard back.)

 

Guess these are side effects from the Depakote?

When God chooses to speak...

There is a couple in my church that recently had a son they named Gabriel. The pregnancy was a nail-biter. Gabriel's parents received troubling news each and every time they would go to prenatal appointments.  I can't recall all of the details, but I know that once they were told Gabriel would have down syndrome and another time that he had problems with his heart.

 

Gabriel was born prematurely at a hospital a couple hours away from home that specializes in baby/children that face serious health issues. Although he was not born with down syndrome, he was born with a cleft palate and heart complications that resulted in open heart surgery at mere days old.  When his parents finally got to bring him home, this beautiful little baby had to have an NG tube (a tube through his nostril to his belly in which he receives his nutrition).

 

I'll never forget the first time that I held Gabriel. There is just something therapeutic about holding a sweet little baby.  In fact, back when I was nursing at the hospital, I remember the "older" nurses encouraging us to visit the baby nursery... particularly after a death.

 

In any event, it's no secret how I've struggled recently... Just the CONSTANT being sick... Hospitalizations... Numerous different medications... Neurologists... Time missed off work... and church... and life. And prayers that haven't been answered.

 

But then, I held baby Gabriel for the first time. As I gazed at his preciously perfect face, I realized that I was never wrong. Everything I ever thought about God IS true! He IS who He says He is!!! He DOES listen to prayers and He IS a tear collector! Here I held a precious little life that really, shouldn't have even been, except that there were numerous prayers lifted up for his life... and God listened.

 

Gabriel's not out of the woods yet, but he is already a testimony. And for me personally, he's truly been a messenger.

Any day pain free is a good day!

After 2 pretty rough days of migraines, accompanied with nausea, I woke this morning feeling okay! HOORAY! To keep my happiness going, it's fall now which means cooler temperatures! YAY! The heat seems to be a pretty big trigger for me, so I'm praying for a couple months of painless days.

 

In other news, I am getting fat. Yuck. Anyone know if that is a common occurrence with Depakote? The side effects that I've read didn't have it listed... Or maybe Relpax? Speaking of Relpax, I don't think I like it. You can only use it 3 days out of a 7 day week... I needed it A LOT more than that this week. :/ However, I do like how it doesn't leave me feeling all dopey... Just sort of takes the edge off.

 

Anyway, going to get ready for work and enjoy the cooler temps and waking up feeling a whole lot better. Happy day!

Hate it when headaches interrupt my sleep!

Yesterday, all was well. Busy but good day at work. I felt fine. Things were good. Then I went to bed. DOM-DOM-DOM-DOOOOOOOM! I woke up at 1:00 AM with a horrible headache. We just got new pillows yesterday, and when I woke it was the smell of the pillows that was overwhelming me. I felt like I couldn't breathe and got very nauseous.

 

I ended up having to stumble to the living room and sleep pillow-less. I don't think I really slept though. Think it was more tossing and turning and grimacing from pain.

 

Worked all day with that same stupid headache. On a pain scale, it was probably a 6. The nausea did leave me though, so that made things tolerable. I've learned to deal with the pain in my head, but I still don't deal with vomiting/nausea that well - especially in public!

 

I'm home now and debating on whether I want to take a Relpax or just try to sleep through it... Since I can only take those Relpax 3 different days of a week, I try to space them out and treat them like they are gold!

Headaches are weird.

Last night, I feel asleep on the couch with my son watching Disney's 'Hercules'. I was tired from a busy day, but otherwise I felt okay. A couple hours later, I shot up feeling like an ice pick had just been jabbed into my right eye socket. My husband was on the recliner, and I must have startled him because I remember him asking me if I was okay. The pain had me dizzy and I couldn't open both eyes. Somehow, I stumbled down the hallway and collapsed into bed. I remember putting pillows over my eye hoping the pressure would relieve the pain, and off to sleep I went.

 

Amazingly, I slept all through the night. I do remember having strange dreams, but not waking up until 6:00 AM is the first for several days. And when I woke, the headache was gone. How weird? I'm thrilled, of course, but I think it's weird. On a happy note, I didn't take any drugs last night - just slept it off. HOORAY!

Champ of the "Remember When" Game

Last night, Martin and I played the game most married couples play... We played the 'remember when' game.  I  know you're familiar with this game.  "Remember when we first met?"  or "Remember the first time we went on a trip together?"

 

Of course no proper reminiscing game would be complete without some bursts of laughter... and memories of tragedies... or times of huge strain... or the times we were closest.  For nearly 10 years of marriage, there was one common theme that was woven through our 'game' - ANYTHING is possible. 

 

Some times, lots of times, we have to think back on milestones in our life to reaffirm that if those milestones were possible, think of how many more you will soon tackle! I am often so doubtful in myself, but as we drove and talked about all that we have achieved and all we have overcome, I began remembering one thing - I can do ALL things through Christ which strengthens me! How easily I forget a seemingly simple scripture that I quote to my children all the time. It can be so much easier to believe in others, but believing in myself has always seemed so challenging. Silly really, when time and time again the monuments erected in my life just prove the opposite of what I tend to believe (that I can't).

 

In the end, I think it's probably safe to say that I won the 'remember when' game!

Call me crazy...

So... as crazy as this sounds, I officially became a "jewelry lady" by selling Premier Designs. I went to a party several weeks back, after never seeing their stuff. I fell in LOVE. So I agreed to host a party and it was SO easy and I scored SO much free stuff and before even thinking... I just decided to become a consultant!

 

My husband is totally supportive. I think he worries about me doing things that make me happy... As soon as I mentioned being a consultant, he was gong-ho! He even designed and ordered my business cards before I'd officially signed up! LOL

 

So now the true test; will I be able to do this (physically) and will I find anyone to host parties? Guess times will tell.

https://www.facebook.com/pages/Premier-Designs-Jewelry-Consultant/450341961753099

Bad day.

Bad day today. Missed work because of it. I'm due to start my period, and I have noticed that ALWAYS triggers severe migraines. I've taken Fiorecet twice today, so I may not make much sense. I'm tired. Sleepy really. I hate these headaches.

My husband stayed home with me today and has pampered me. He's also forcing me to drink water. Ugh. I just want to lay my head down, drinking water doesn't fit into that. But being dehydrated will only make things worse too.

We've ordered a new mattress. I've never had a new mattress before. We ordered pillows too. They are the kind with cooling gel. I've read a bunch of stuff that says how good they are for headaches. Can't wait till it's all here so we can try.

Going to drink some water now.

Walking in a desert

It's Sunday today, which means church for my family this morning. Church these days causes such a mix of feelings in me. Currently, I feel further away from God than I think I ever have. My prayers and my cries have gone unanswered for so long, nor have I heard His voice in so long, that I feel as if I'm in the middle of a desert... stranded... wandering around in circles... starving... reminiscing of streams and thinking I might see a mirage - my only chance of hope.

 

For the past several months, I've just been on autopilot. But I'm angry. I try not to be... I don't want to be... And there are times that I THINK I might be over it, but then is said or done and the anger just resurfaces. And I'm angry with God.

 

Strange how I feel some comfort in my anger. I could only be angry at someone that I have (had???) a relationship with. And yet I'm angry with Him because I feel like I never knew Him??? I feel confused. I feel lost. I feel as if a deep dark fog has settled over me in that desert.

 

But yet I still choose to believe one thing... "You are who You are, no matter where I am!"

The way our country is headed...

So today at work, I had to tell one of our patients that the medication that she's been on for 10 years is no longer covered via her "government-funded insurance" company. Earlier this week, her pharmacy called to notify me that her insurance company had denied her refill request.  I contacted the company to see the problem and was told that the patients doctor would need to submit proof that a "less expensive" medication couldn't be used.

 

So after consulting with the doctor, I submitted documentation and the patients records over the last 10 years showing that different medications have been tried with poor results and that a dramatic improvement was seen when the patient started on this, more expensive, medication.

 

But it didn't matter that this medication has worked for her all this time... It didn't matter that I provided the company with PROOF and a SIGNED statement from her DOCTOR. :( All that mattered is that the medication is expensive and someone with NO medical degree just decided she no longer needs it. Again, the claim was denied and this insurance company refused to cover this prescription. Can you tell how upset I am???

 

It makes me feel awfully uneasy to know that our health is in the hands of people with no medical background or expertise. It makes me uneasy to wonder if I'll start being denied from medications prescribed to me by my doctors...

Mandisa - Broken Hallelujah.wmv

Unless you've lived it, then shut up.

Aaahhhhh... Headaches have waken me up the past 3 nights. I've had to take Fiorcet at work this week to keep on going, and I've maxed out on the Relpax for the week. (I can only take it 3 days out of the week.) BUT I can honestly say that I've pushed through. I worked, I took my daughter on a 'date' to the movies, and I went shopping with my family. However, just because I've not been passed out on the couch like I wanted to be, does not mean that I haven't hurt. I can honestly say that I'm sick and tired of being sick and tired.

 

And no one understands. I'm constantly being pushed to do more. CONSTANTLY. I can only imagine how frustrating it must be for me to "always feel bad" for my family,  and yet hearing that only adds to my frustration. I'm sorry I "always feel bad". But I do. Not sleeping for 3 nights straight because of PAIN sucks. And I didn't ask for it.

 

But unless you've actually been there, you just don't understand. My husband is fit as a fiddle. He's a marathon runner and honestly feels like my cure will be if I run and get healthier. He's anti-medicine. He's tired of physicians and hospitals. He just wants me to cure myself by "getting those endorphins pumping". Oh if only that was the answer! Unfortunately, unless God miraculously heals me, I just don't feel that there IS a cure. (Of course I'm not allowed to say that either because I'm just being too negative. As if living with feeling this way for 6 years wouldn't make me feel a little negative.)

 

If I get upset and cry, I just hear "Oh God..." Don't get me wrong, I know that living with me, with someone with a chronic illness, must be very hard. But it's also VERY hard for me, the person with the chronic illness.

 

And one another note, the constant pushing does not make me want to do more. Honestly, it makes me want to give up. I'd like to find a rock, climb under it, and just sleep forever.

 

So the moral to this story, unless you've been there, unless you've lived it, then shut up. The end.

Link found in obesity and chronic migraines

Well, had "the headache" yesterday. Even had to take a Fiorecet at work, which I rarely EVER do. Normally the codeine in it makes me a little sleepy, but yesterday it just seemed to take the edge off. By the time I made it home, my head hurt so back that I was dizzy and opening my eyes hurt. Ended up taking a Relpax and climbing in bed. Wondering if it was just time for a headache, or if it was the exercise from the day before??? But surely not (the exercise)... If that was a trigger, wouldn't I have felt bad while, or shortly after, the run?

 

Anyway, I got through the day. This morning I still have a mild headache. It's like a caution light warning me that it wouldn't take much to set me into another full fledged migraine. The funny thing is, once I get to work, somehow I'm able to get through the day. Being busy probably distracts me. My head doesn't stop hurting, but as long as I keep busy and don't settle down, I can make it. The MD that I work for even had to run me out of there yesterday. I had enough work that I could have easily stayed another hour!

 

Huh. The news just said that "obese people are 81% more likely to suffer from chronic migraines, but more research is needed to see if weight loss decreases symptoms". Just more reason for me to keep running! :)

Running, running, running

Ran 3 miles again today with my husband. My running is really improving and I can see where I might actually enjoy it. No strider today, nor did I throw up! YIPPEE!!! My average time was 16:15 a mile and my heart rate average was 166. Headache is only now about a 4!

 

Since being off of the Topamax, my mind seems clearer. For as long as I can remember, I've felt like I was thinking through a fog. Sometimes I would stutter or even say incorrect words. I've always described it as feeling "dumb". Those things seem to be happening less often, which is certainly a confidence booster! I've also been actually missing things I used to enjoy like reading and crafts. I haven't had any interest in either of these things in what feels like years! So maybe the depression is better too? Doc might have been right about the Topamax causing it! And to think... I just thought I was nuts.

 

Before switching from Topamax to Depakote, I would average a strong/severe migraine at least 5 days out of 7. I also would wake up at least 3 nights a week from the pain. I have noticed that I'm sleeping more often through the night, and my headaches might have become less frequent. It is a little tough to tell though because I've had so much nausea lately. One new thing is that I seem to dream a lot more than before. Last night I dreamt about snakes under the hood of the car. Strange, huh? Tornados, snakes... I read something about dream interpretation that said those 2 things were signs of feeling out of control or overwhelmed. If that's the case, I should have been dreaming those dreams ages ago!

 

So the moral to today's story is that I once again see a light at the end of the tunnel. Maybe running and Depakote is gonna be the tricks to give me some quality of life?!?

Grace and Tornadoes

Sometimes I have wondered if I stay sick because of something I have, or have not, done. At this point, I am too weary to have faith. I guess I feel that if I haven't been healed at this point, I never will be. The money I owe to doctors and hospitals is overwhelming, never mind what I pay each month for medicines. I am mentally, emotionally, spiritually, and physically exhausted and the 'fight' that I once had left a long time ago.

 

But today I thought about God's grace. I thought of how it is not contingent on me. He is good no matter how weary I am. He is good if I'm a 'fighter' and when I feel overwhelmed. He is good just because that is who He is. I don't have to earn His grace and I don't have to worry about losing it.

 

God created me and knew just what I could tolerate. He knows that I am only a human and He knew ages ago that after 6 years of pain and no relief in sight, I would be weak, weary, and faithless.  Another thing that I remembered is that even though I can't hear Him... even though I feel as if I've been walking in the wilderness forever... my prayers are NOT bouncing off the sky. I believe with everything I have left that He is a tear collector.

 

 

On another note, last night I dreamt about tornadoes. I have once heard that dreaming of tornadoes means that you feel you have lost control. How fitting is that! I have no control over my health and how I feel. I am terrified to commit to anything because I don't know how I'll feel hour to hour, much less days in advance. I feel as if I have no control over any of my dreams, or goals, or plans. Shoot, I don't even have a personality anymore!

My Latest (Pretty Boring Actually)

The work week has come to an end. My knees are still pretty painful from running last week and I felt certain that by now they would be better. I read where painful joints is a side effect from the Depakote that I now take... But then, maybe I'm just fat and out of shape? Hummm...

 

My headaches are less intense and seem to be less frequent.  However, I was supposed to increase my Depakote 100 MG from daily to twice a day. I have had problems with pretty bad nausea/vomiting and think that I may be having a tough time adjusting??? In any event, the nausea has resulted in some noncompliance on my part.

 

Anyway, that's the latest here. Sometimes I wish I still had someone to talk to that's been where I'm at. All of the brain tumor websites I find seem to be dedicated to children... Amazing how something that happened nearly 6 years ago still has such a grip on me.

 

Mourning the loss of me

We just got home from spending Labor Day weekend at the beach. Used to, I loved nothing more than the beach... The feeling of the sun warming my skin, the sound of the waves crashing on the beach, the soft powdery sand between my toes, sounds of children screaking in delight, etc. However, like I said, that was used to...

 

Now... well, now as much as I try to enjoy what used to be my paradise, it just leaves me sick and miserable. It doesn't take long for the bright sunlight to be blinding, my skin burns and I feel so hot that I think I'm going to hurl any second, the sounds that I once loved ring in my head, and instead of enjoying myself I'm just miserable.

 

I try as hard as I can to have fun, to BE fun for my family, but I must accept that the place that was once my paradise is no longer my favorite spot on earth.

 

Perhaps I should try a mountain trip???

This might be working?

Something might actually be working (that's me sounding hopeful)! I complete the Medrol dose pack today and I've been diligent at running. I've been drinking more water, and other than continuously waking up at 4:00AM each day, I am feeling better. Also, I am now completely off of Topamax now. My head's more clear and the headaches aren't nearly as intense. Maybe this is it?!?

 

Yesterday we ran/walked 3 miles again like we did Monday. I could tell a difference in my breathing (no more strider here!) and I didn't throw up even once. LOL My husband said that he could tell a huge difference. However, now my knees are killing me. I propped them up last night and put ice on them, but when I rolled over in my sleep their ache would wake me.

Let's see if this road to improvement keeps it up!

PRICELESS

The number of times I puked up lactic acid in the middle of the road? 5
The number of times my breathing was so bad that I had stridor? 2
The number of people that came out of the house because they could hear me panting/gasping? 2
The number of times I cried? That entire last half mile
The pain scale of my head? 5
Knowing that I ran/walked 3 miles yesterday... Priceless :)

Is there no grace? Is there no mercy?

I've started taking my 9th grader to school each morning. She likes to call it "mommy/daughter" time. I am just thrilled that she not only wants me to, but that I've finally found SOME kind of mothering that I can do.

 

In any event, I was asking her why she doesn't spend time with the youth group at church. When we make it to church, which unfortunately is rare lately, she never wants to go to Sunday School with the other teens. She never goes, almost crying if I try pushing her into going to 'Friday Night Extremes', etc. Her answers just broke my heart.

 

It's one thing for me, a 30 year old adult, to have thoughts and feelings of negativity about/toward people that my health (or lack thereof) conditions have brought on, but it was quite another to drive along listening to my little girl poor her heart out about church people. While I have known that my family has been (and is currently) affected by my daily struggles, I guess I just sometimes forget.

 

Some of the examples that poured out of her where the comments that she hears about the church she misses.  She said she hears things like, "Oh wow! You've finally decided to grace us with your presence?" or "You know as Christians, it's good and godly to gather together frequently, not once a blue moon." Her telling me this angered me. For starters, she's 14 years old, so it's not as if she has any control over where she goes and when. And then the funniest thing to me is that no one has offered to pick my children up for us when we have made it no secret how we are struggling.  Early on, we did reach out to people asking them every week for rides for my children so they didn't miss church, but then having to always ask left me feeling a bit like a nuisance. Never has anyone in the youth department ever offered to assist my daughter with transportation. Ever. And yet somehow, they think it's okay to condemn her?

 

There are other times, when I'm really sick or hospitalized (and it seems like some may have forgotten that I've spent 2 weeks in the hospital in the last 9 months), that she won't leave my side. You must remember, she was 8 years old one day when I put her on the bus and then she didn't see me again for weeks and weeks. All she was told was that I was very sick. Now I know after talking to her, that she'd overheard adults whispered talks and heard that I could even die. For a couple years of her life, it was just the two of us. We are buddy's and she feels a responsibility to me. If she feels that not coming to church on Sunday, but laying next to me while I sleep or cry, and reading Psalm 23 to me is important, then so be it.

 

I tried reminding her what I always try to remind myself: Church and God are NOT the same.  I told Lexi that Jesus would have encouraged our church to help people like us with things that can be difficult at times, like getting my kids back and forth to church, or cleaning the house, or helping with meals. But one thing I know for sure, Jesus would never fuss at us when we did make it to church for not being there the Sunday before because I was laying in bed crying and writhing in pain.

 

God is so full of mercy and grace that we cannot even fathom it all... And yet I think that many, if not most, CHURCH people, are totally lacking.

Whirlwind of a weekend

Well, it's certainly been one whirlwind of a weekend!

 

Friday morning I saw my 'new' neurologist since last being in the hospital back in July. Used to, anytime that I had a neuro appointment to go to I would feel hopeful, like maybe THIS time we'd find a way to bring my life back to some normalcy. However, this time I was just annoyed. The appointment had been rescheduled by the doctor's office twice. Originally when I scheduled it, I made sure that my doctor would not be working in the office at the time of the appointment so that no other nurse in our office would have to cover for me. But because they kept rescheduling me, I ended up with an appointment time when my doctor was in so another co-worker did have to work with him. I also have reached a point where I just feel defeated.  I feel like this is my life and I just have to learn how to deal with having a migraine, a strong to severe migraine, 4-6 days a week.

 

But when I finally saw my "head" doc, she actually LISTENED to me and asked me all sorts of questions and then fully examined me (something my old neuro doc NEVER did).  This resulted in me breaking down and crying and carrying on.  I totally made a fool out of myself and embarrassed myself, but instantly she asked if I'd ever thought my sudden mood swings could me a result of medication. Back in July, they had raised my Topamax dose. I've been on Topamax for over 5 years, but apparently a rare, yet severe, side effect is mood swings. Thinking about it now, I can see where I have become more withdrawn and depressed, but I thought it was just feelings of defeat over yet again finding no answers to curing or at least improving my quality of life. So, the plan in that I'm being weaned totally off the Topamax and started on Depakote. Since obviously the Midrin and migrainal spray aren't doing anything for me, she's given me Relpax to replace them. And I have to do a stupid steroid dose pack. Ugh.

 

My neuro doc also talked to me about the possibility of starting Botox treatments. Apparently they are shown to be very effective for the treatment of migraines because they relax the muscles in the head that are inflamed causing the migraines in the first place. Downsides are that these treatments are every 3 months and the obvious fact that it's injecting a foreign substance in your head... A lot to think about.

 

So Saturday morning, my husband's attempt of a cure commenced.  Together, we went to our first 3 mile run\walk with a group in our community. He's an avid runner, runs marathons even, and is convinced that exercise is going to "cure" me. We'll see. I struggled during the run, but he stayed by my side and somehow I got through it.

 

Saturday afternoon I went to a jewelry party at the home of an old nursing school friend. It was great to see some old friends, especially since I rarely ever leave my house anymore.

 

But by the time I got home, a severe migraine hit me. Can't tell if it's the withdrawal from the Topamax, or the running, or the fatigue\dehydration from the run. Until next time...

Still trying to find a remedy!

Of course there's prayer, and I've tried many different medicines (still on some), I've tried doctors - even changing doctors, I've been hospitalized, I've tried lumbar taps and drains, I've tried special diets, I've tried losing 40 pounds, I've tried massages, but now I'm trying exercise. I'm pretty hesitant because I not only don't feel well but I'm also afraid that it will be a trigger. But my husband is a marathon runner and has convinced me to join a team of run/walkers that is beginning to slowly train for a marathon/half marathon that will be in March 2014. Yesterday was my second 2 mile WALK with him. I must admit, although our brisk pace left me very out of breath and sweaty, I didn't die and my head was okay - no worse than when I started. We'll see.

 

Tomorrow I have my first appointment since I got out of the hospital with my new neurologist. Ho-hum. What a life! (; Speaking of, my mom saw my old neurologist earlier this week. The one that came in my hospital room this last time acting all nutty and yelling at me. He was singing a new tune and telling her to let me know that I could come back to him anytime... :/ Uhm...

 

In any event, school for my kids has just started and my 9th grader had to write an introductory paper in her drama class to present in front of the class. She read it to me and it just made my heart break. The theme of her paper was how she was a sensitive person and why she felt that she was that way. Because of me... Because she lived with a brain tumor surviving mom and a mom with chronic migraines that was in\out of the hospital. She didn't get detailed but mentioned learning how to sacrifice so her mom could get medicine or pay for medical treatment. When she read it to me, it took everything I could not to cry. I know all the things she's talking about. Last fall, she was supposed to get braces, but in September, the week we had booked a condo for the beach by the way, I was put in the hospital because my intracranial pressure was extremely high. Her braces money went to my head. And instead of her mom and dad taking her and her brother to the beach, she went with her grandma and a friend. Then this year her youth group was going on a big trip, but I was paying the expensive co-pay for medicines and ended up hospitalized again ruining her chance of getting to go. 

 

This is how my children know me. Sickly. I HATE THAT! And when I feel well, I will do everything I can to make good memories with them to replace these bad ones. I will play silly games on the computer with my 8 yr old and I will talk boys with my 14 yr old. We'll spontaneously go to the beach and laugh to loud when I'm up to it.

 

There is one thing having a stupid illness has taught me and that's how to appreciate life!

Choices, choices

Today is Sunday. In my previous life, I would be getting ready to go to church and yelling out frantic orders to my family to ensure that they were all ready in time to leave. Unfortunately, I've had to learn all my migraine "triggers" and knowing them, I've had to make some hard choices.

 

Last Sunday I woke up feeling great. I didn't have a headache at all, but the longer I sat through church, the worse it felt until suddenly I felt it come crushing down on me and I finally had to just run outside and sit outside in the car in the air conditioning wide open all alone in the silence. Of course then I just felt a big pity party for myself, and I couldn't tell you what church was about.

 

The triggers present at church are all my top three migraine triggers and since I'm still so unstable, it's just as dangerous of a place for me as a theme park.  For starters it's bright in there.  My home is dark, I wear sunglasses in stores. In fact, the only time I don't wear my sunglasses is at work, and some times that's rather tough. I've thought about wearing my sunglasses at church, and my church family would understand, but visitors would think it was strange. Secondly is ODORS. I just can't handle scents anymore, and church is certainly the wrong place for that! It seems that everyone thinks that Sunday's are the time to bathe in their perfume/cologne, and then I go to a very 'huggy' church so I am constantly bombarded by everyone's different scents intertwining. Lastly, my church is very loud. Everything is loud. The music is loud. The speakers are loud. The announcements are loud. The preaching is loud. Everyone claps. It's just loud. I used to love it... But now... Well, now those claps, or the drum beats just stay in my head and I can't hear anything else. And all I can do is smell all those smells and the world starts to spin and get black but bright at the same time. And my stomach starts to turn. And I just want to lay my head down and hide... And what I used to love, I now hate.

 

Ugh.

 

My family, my CHILDREN, have begged and begged me to 'hang out' with them today. Tough choice. I could try to go to church, even though I already woke up with a headache today... Or I could 'hang out' with my family. Really, it's a no brainer, I just want to be able to do it all. Who doesn't? I'm only 30. I want to be a GOOD mom, and wife, and go to church, and work, and maybe even go back to school, and start running, and have friends, and do whatever else I want to do. I don't want to hear that I can't. I always tell my kids not to ever say that they can't. I HATE hearing that. Such a lame excuse to me. And yet... I can't. UGH!!!!!!!

Searching for that silver lining (;

So yesterday was rough at work and sadly today was no better. You spend too much time at work to be miserable, and to add insult to injury, a horrible embarrassing female problem occurred resulting in me needing to rush home to change clothes. :/ AWFUL! Nothing like that has ever happened to me before in my 30 years of living, and I WAS prepared... but it just wasn't enough, I guess. Ugh. Needless to say, I cried like a baby all the way home and called my mom.

 

But as rough as the last couple days may have been, I have to remember that I get to come home each day to kids that thrive off getting smiles out of me and fight over my attention. My hubby baby's me, and today slips and tells me of a present that will be here for me by the end of the week. I have a good marriage, we like each other, and we're friends. My kids do well in school, they are well behaved and good. My sweet Stella is such a lovely little lap dog that somehow knows exactly how I'm feeling, when.

 

My life could be a lot worse. Bad days are just that, bad days, but not a bad life. I have a good life, and one that I am grateful for. And like my Mama always said, every cloud has a silver lining.

It's lonely at the top...

I've often heard that... that it's lonely at the top. Guess it's true? I've been made 'Team Leader' at work. It doesn't mean anything really, but yesterday I held the first meeting with all our other nurses just to brainstorm on what we could do to make our office better. I thought it was a good thing. I thought it's what I was supposed to do. I was NOT prepared for the barrage of pitchforks that I was greeted with after the fact...

 

My team of nurses weren't the ones holding the pitchforks, it was more like other staff members giving us the silent treatment. Apparently our words were misconstrued to that we were pointing fingers at others stating that other departments were not doing there jobs. *sigh* I suddenly feel as if I am back in high school, literally! One of these disgruntled co-workers deleted me from her Facebook last night!

 

You know, I was just trying to do a GOOD thing. A positive thing. But I guess a little bit of change was enough to stir up an ants nest and boy have I been bit! I am about as excited to go in to work today as I would be to face a firing squad.

 

Do I keep trying to find/fix whatever is not right? Do I keep trying to offer solutions? Or do I tuck my tail between my legs and just hide in a corner? Well, if you know me... I'm sure you know the answer to that! (; In the meantime, I'm off to lick my wounds!

Recently, I've been feeling like 'World's Worst Mom'. I keep expecting a trophy or some medal or with this horrid title... Perfect example, here it is, a Friday night, kid's first day of school was today.  The house is dark, quiet, and cold. Signs that a migraine in present. I am alone on the couch, as always. The kids are gone with their dad. Like always. *sigh*

 

What a thief, these headaches. My life consists of work and then the comfort of my dark quiet home. I very rarely ever venture out. Ever. Ever. My husband knows all the neighborhood kids. He knows their parents. He plays outside with our son and his friends. Rides bikes with him. Plays ball with him. sometimes, he'll pull up from work and a group of neighborhood kids come running up to greet him wanting to play with him! Me? Well, I can be found keeping the couch comfy gritting my teeth if they ring the doorbell because that ring stays in my head forever. *sigh*

 

I miss church pretty regularly - not the best example I'd like to set for my kids. Thankfully, my husband, the perfect dad, is always there to take them. Do I sound envious? I am, a little... But only because I wish I was more like him. I wish I felt like running around outside. Jumping on the trampoline. Riding a bike.

 

When I was "well" was I a more 'involved' mom? Hummm???

 

So anyway, I've been beating myself up. A lot. Not a hard thing for me to do. I've always been hard on myself about everything anyway. But then I realized that I might not be so bad after all.

 

Last weekend, I picked my daughter up from spending a week with my grandparents out of state in their retirement community. Everyone in their little community just raved about what wonderful manners my teenager has and how kind and helpful she is. I get compliments like that about my kids all the time, and I think that says something about how they are raised. Also, whenever my daughter, who is now 14, is going through a trial or trouble, or if someone she cares about is, she'll always find Bible scriptures for them. That is also something that I am proud of, and something that I have taught her.

 

As for my son, there are computer games that the two of us play together. I've taught him how to play silly games like 'Bejeweled' and 'Family Feud' and every night we play a game or two together, in the safety of the couch. We cuddle and watch movies together when I'm having particularly bad days. I make it a point to make a big deal when action movies like 'Batman' or 'Spiderman' come out.

 

When I do feel well, I know it's rare for us all, so I make the most of it by doing spontaneous things. Once I wore a fake HUGE mustache through Wal-Mart. I thought my family was going to pee on themselves they laughed so hard. Another time I just randomly started up a Nerf gun war with them. Or I've just woke up and decided we should go to the beach.

 

So... I may not be PERFECT... But I don't think I deserve that stupid medal after all. (;

Blessed are the cracked...

It wasn't that long ago that I saw a quote that I absolutely loved.  Maybe I loved it because it gave me hope.  Maybe I loved it because of its simplicity.  Maybe I loved it because of its truth.  Whatever the reason, I loved it. "Blessed are the cracked, for they let the light in."

 

 The quote quickly became my screen saver and I'd frequently repeat it to myself, as if to inspire myself.  It seems my husband took notice.  Today when I came home from work, there was a present waiting for me.  A tag frame that he'd designed, complete with part of that phrase that I love so much.

Kids say the darndest things...

The past two days have been nearly headache free. When I awoke this morning, my fourteen year old's face was the first image that I saw. She was peering at me with a worried expression on her face.  Instantly she started asking me how I felt, if I was okay, what I needed, etc. I was a little confused because I didn't need anything. I felt great. When I told her this, she had a look of utter confusion.

 

How guilty I feel. Here I am, the mother, and yet, my daughter has the role that I should have. She's the one that looks after me. Worries over me. Brings me water, or cuts the lights out, or wards off the neighborhood kids from making too much noise outside. She just needs to be a fourteen year old kid. And yet, she is just so mature... And that's because she's always had to be. For the last six years she's had the pleasure of living with a mom with chronic migraines.

 

And it's not just her. My eight year old son tenses up if his little friends ring the doorbell when really he should just run out to greet them so he can play. He shouldn't be worried that I'll have that ringing vibrate in my head for thirty minutes or so after it's stopped. And my husband... Well, I can't even go there.

 

A friend of mine recently posted something on Facebook about caring for her elderly mother and how it was both hard on both of them and yet the greatest blessing all at the same time. I think that's how I feel. I feel like such a tremendous burden to my family and so GUILTY because of it, but they insist that it's a blessing that I'm still here with them.

 

But I AM feeling better and better. My hope and prayer is just that I WILL get better so that my kids CAN finally be kids and not worrying about me. Shesh!
 

Heartbroken

Yesterday, a good friend of mine went into labor at just 22 weeks along. They tried everything to stop it, but nothing worked. She delivered a beautiful baby boy that was under 1 pound, but he was still born. She's had 2 miscarriages before. 

She was already showing, talking to him, loving him... Excited. She had registered and taken belly photos. And then, heartbreak. *sigh* Life can be so cruel.

In other news, my headache free period was short lived. The next day I went to bed with a kind of bad headache, but since then it hasn't been too bad. If I had to rate the pain I'd give it a 2-3.

Can't really think to write. My mind just keeps going back to the sleeping baby... :,(

Day 1 of NO HEADACHE!!!

So the month(s) long migraine BROKE! Today makes day 1 of absolutely NO headache. :D I am absolutely beside myself with joy. I haven't felt this good in ages. Feeling this good makes me feel that getting the second opinion, standing up for myself, speaking up for myself, was worth it. Even though it made me uncomfortable to "step on toes", I did the right thing and maybe, just maybe, I'm finally getting better!

 

Already my little family has plans for a day trip this weekend and I'm just so excited to be able to do that and not lay cooped up on the couch, in the dark, feeling like crap all weekend. HOORAY FOR HEALTH!

I love the broken ones.

There is a song that I really like by Dia Frampton called the 'Broken Ones'.  There is a line in it that says "I love the broken ones, the ones who need the most patching up..." I would have to say, that is definitely true for me.  (The entire song is beautiful!  I'd strongly recommend downloading it from iTunes! I've added the song for your listening pleasure to my blog below.)

 

Unfortunately, becoming "broken" isn't easy nor is it fun.  It usually means you've been through something.  Or somethings.  But being "broken" sands off the edges and allows character to shine through that nothing else would ever possibly do. 

 

I look back at my life and I'm thankful for all the rough patches.  Not only have they made me who I am, but they have made me compassionate, and humble, and a survivor.  When I think of the people in my life that I truly admire, they are all 'Broken Ones'.  Some of these have lost a spouse, or a child, or battled near death sickness/cancers, or had spouses or parents with chronic illnesses, or lost jobs, or divorced, or had parents that did, or had parents that maybe should have, or had parents that were addicts, or were addicts themselves, etc.  Put capes on THESE people because these people...  Well, lame as it may sound, these people are my heroes.  These people are the people that are worth getting to know.  They are worth being friends with.  I could care less about the Jones' or the folks down the road with all the money or the fancy car or the big house and fancy clothes.  THESE folks have depth.  THESE folks have had life sand off their crud and there is beauty shining through.

 

But really... I think that most people probably have been broken... shattered...  Most people just keep those cards so close to their chest that you'd never know it, but sadly, when there is none of that transparency, you don't see any of that diamond shining through either. 

 

I wonder why we, as people, think that we have to pretend to have it all together?  Why do we feel that we can't just be real? 



Dia Frampton - The Broken Ones (Lyrics)

Nothing is free, but sometimes the fee is well worth the prize!

For the past 3 days I have felt better than I have in ages, not cured, but better. Yesterday we took a little day trip down to Alabama to visit my childhood best friend for her birthday. It was a wonderful day. Our family's went bowling and laughed and just had a great time.

When I woke today, I did have a headache, but not bad enough to stop me from going to church. I haven't been in ages so I was pretty excited about going. But... the longer I sat there, the longer fatigue and the strength of the headache hit me. It felt like one of those 14 pound bowling balls from yesterday had replaced my head and my neck's just too weak to hold it up. When I came home I took a good long nap, and I'm looking forward to going to bed tonight. LOL

Still, I am getting better every day. I'm not there yet, but I can see hope. That's enough to keep me going.

Turn for the... BETTER!

I am THRILLED to be able to truthfully say that for the past two days, I have felt better than I have felt in ages! On a pain scale of 0-10, I've been at a 2!! Way better than the 7 I've been dealing with for the past few months.

I'm still on the Topamax and Cymbalta, but my new neurologist has added Midrin and a PRN medicine called Dihydroergotamine Mesylate. This latter medication I have never heard of, it leaves a horrible taste in my mouth, but it does seem to offer some relief. I'm back to using a pill box to remember when and how often to take my medication, but I'd take that over how I was feeling any day.

My mood has improved as well. Why wouldn't it? After all, I finally feel like my head's not going to explode!

Yesterday, a friend stopped by and made the comment about me being such a trooper. If she only knew! I feel like I am the biggest whiny butt in the world. But then... I guess the only people that I really whine too are those that live under my roof. In front of everyone else, I am pretty good at slicking on a smile. After all, I have had nearly six years of practice. (;

Why, why, WHY???

I believe that there comes a time in one's life when they ask one extremely pivotal question: why. They may add other fluff to it, like, "Why me?" "Why am I here?" But stripped away, all they are really wanting to know is one thing. WHY.

 The Bible is slam full of others that have also asked that ever important question.  There was this prophet named Habakkuk that began his book pretty annoyed with God.  He was saying how long he'd been crying out to God and yet it seemed like God wasn't listening and people were just going crazy anyway and things were going terribly wrong... He was asking why.  Hummm... Funny, I've felt forgotten before too...  Anyway, in chapter 2 Habakkuk states that he's going to stand firm and then suddenly God starts to speak to him... So he got his answer. But it wasn't easy. He first had to go through a time of crying out and feeling ignored. He had to go through a time of feeling like everything that could go wrong, was going wrong. 

 

Of course there is Paul. Good ol' Paul. None of us know what was ailing him, but we DO know that it troubled him enough that he went to God about it three times. I think about him a lot.  I wonder what more he might have done if that 'thorn wasn't in his side', but then I also wonder if that 'thorn' had been removed, would he have fallen?  Afterall, there is a reason that God left it there saying that His grace was sufficient. I think about myself. All the things that I want to do, could do, if I was healthy... But... will this thorn be left in my side?

 

Gideon asked God 'why me' when God wanted to use him to deliver his children. Job certainly asked 'why'. Joseph asked 'why' when his virgin wife got pregnant. Moses asked 'why' to the burning bush. Shall I go on? 

 

God, You eventually spoke to Habakkuk. Speak to me as well. Give me some comfort, Lord, the comfort that only You can give. I don't want to feel ignored anymore. If this 'thorn' is meant to be here forever, give me grace to sustain this. 

Obituaries are dumb.

Today my constant thought has been on my obituary. That and the color that I'd like to redecorate my bedroom. Let's address the obituary first as it's the most morbid.

I suppose it would say something like:

• Jessica Norman, of Albany, Georgia died ________ , _________ ___, 20__ after a long battle with complications stemming from a brain tumor. Born in Honolulu, Hawaii, May 5, 1983, to Juan Garcia and Kimberly Varnadoe, Jessica married her high school sweet heart in 2004 and has two children. Jessica was an excellent student and a loving mother; she received her Associates Degree of Nursing in 2011 from the Darton College University. She went on to work in Med/Surge nursing and then work in Southwest Georgia Nephrology's office. Jessica is survived by her husband, Martin Norman, and children, Lexi and Caleb.

Sadly, that short little blurb doesn't tell anything about who I am.  I hate it.  It's like a waste of space.  A joke really.  Sad that there are some people in this world that will only know me based on this short little paragraph.  I hate it.

 

So that's how I'm feel about that.

 

Now onto less morbid things, my room. I seriously want to redecorate my room. Of course I need to feel better in order to do it. I want a new bed comforter in a fun new vibrant color so that I can get several throw pillows to "match".  And I want to repaint.  And get new curtains.  So I really MUST feel better, see. I have things to do.

AAAUUUUGGGHHHHHHHH

So incredibly frustrated. I'd like to be clever and compare my present feelings to those of others that have felt similar to how I'm feeling, but honestly I'm just so upset that I can't even think past my feeling of defeat/despair.

I was released from the hospital yesterday. When I went in, I got a "new" neurologist which meant for the first time in over 5 years, I got a fresh new perspective. That did give me hope. My MRI's and lumbar puncture all came back fine and the prognosis was just that I've basically been undertreated all this time. So it was decided that I would come home to 2 new medications. One of them would be a migraine nasal spray and the other called Midrin. It sounded like it wouldn't be long and I would live a fairly normal life!

Well, since I was discharged yesterday, the pharmacy was of course closed. Riding home made me EXTREMELY nauseous and we barely pulled over in time for me to puke everywhere. Fun. But I made it home and then insisted that my husband take my kids out to enjoy the fireworks of the 4th of July while I laid on the couch feeling sorry for myself. What joy.

First thing this morning, my husband took my prescriptions to the pharmacy and was told that these two medicines are so rarely used that they aren't even in stock at any of the pharmacy's in town. Therefore, they wouldn't be here until tomorrow. So I laid on the couch all day whimpering in pain and digging up some old Lortab that I had. But this afternoon the pharmacy called my husband with their apologies that the medicines would actually not be here until MONDAY!!!!!!! I just crumbled in tears.

 

You know, I know that I should be ashamed for complaining when there are so many people out there that have things worse than I do. I have a home and family. I have friends that love me. And yet I am sick and tired of being sick and tired. I want to be able to enjoy all that I've been blessed with. I wanted so badly to be a part of my family last night to watch the fireworks. I want to be outside with them now playing in the rain. What kind of quality of life is this? When I function, I am on autopilot and only make it for so long before crashing... I just want to live. I just want to be a normal 30 year old. Is that so selfish of me to ask?

Happy for my freedom OUT of the hospital!

So I finally did it. Monday, I was hospitalized and requested a different neurologist and received a second opinion.  My "old" neurologist was VERY upset, even came bursting in my room and chewed me out.  I felt absolutely horrible, as I had already been having the hardest time making this choice, but when I met my new neurologist, I felt that I made the right choice.

In the 2 days that I was hospitalized, I had MRI's with/without contract and neither showed any changes. (HOORAY!) Then, I had a lumbar tap, but it was also normal. (YAY!) All we can guess is that I have been on inefficient meds for my body for several years. We're trying to break through this headache and then find new maintenance meds to get me back to 'normal' living.

Normal living... Wow... I can't even imagine... This year, my family has all just left to go see fireworks because today is the 4th of July. I am spending it throwing up, lying on the couch, (forcing myself to) drinking water, and trying to watch Lifetime and feeling sorry for myself. This will be the second year in a row that I've missed the 4th of July due to this kind of thing. Of course I wanted them to go, insisted on it even, but I want to go to!! :/

I just want to be NORMAL. I want to live NORMAL. I want my 8 year old son and 14 year old daughter to have a NORMAL mom. One that pillow fights with them and paints my daughter's nails and shoots my son with Nerf guns and lays under the stars and watches fireworks. I don't want to miss work and have my boss know that my head is retarded. I don't want to know the ins and outs of pain medicines and their side effects. I just want to be a normal 30 year old. I want to paint my toe nails and walls and I want to work out and be fun and have fun. And I don't want to be in the mully grubs and whine and complain.

In the wise words of my momma, this too, shall pass. I will survive because there is one thing I have learned about myself in the last 6 years... I AM a survivor. I am a fighter.

Raw

Dear God,

I do not like complaining all the time; however, I also do not like feeling like my head is going to explode 24/7, or lying  awake in pain, or fantasizing about something as morbid as my own funeral, or gobbling pain medicine to get through a day (every day), or basically ANYTHING about my current living situation.

I have been at my job for 6 months, so naturally I have no vacation/sick time yet. I have just recently told people about the tumor because I don't want to scare folks off. The last thing I want is for my new employers to think (know?) they hired some sickly person that can't function. Each day, I muster up every ounce of strength that I have to get through my 8 hours. I have learned to function quite well with the pain. After all, I have been dealing with it now for going on 6 years. But it's the THINKING part that takes it's toll; forcing my mind to THINK beyond my throbbing head, or the feeling that my left eye is going to explode out of my eye socket, or the fogginess in my brain that makes it hard for me to recall things that I know, I know. But I'm managing. And I really try to stay positive and upbeat. But God, I'm just so discouraged. And I feel so alone.

I feel like a failure. As if this is somehow my fault and I should somehow just push through all this. When I'm home, I feel like the world's worst mother and wife. I am too exhausted and I hurt to much too want to do ANYTHING. I don't cook. I rarely eat dinner because I'm either drifting in/out of consciousness due to pain meds or I'm just hurting too bad to care about hunger. I don't go outside because the sun is too bright. I either wear sunglasses in the house or we keep all the lights off like vampires. I refuse to answer/talk on the phone because for some reason, that speaker on the phone has just always bothered my head worse. *sigh* I'm just LOADS of fun.

I feel like a failure at church. That is, when I can lift my head off of the couch to go. I constantly hear of how much You want to use me. How much You have in store. I feel as if that's a sick joke. I'd LOVE to do more. I'd love to be who I used to be, or MORE, but that's not who I am... And I guess that makes me feel angry with You. Because I'm in this desert all alone and You could pluck me out at anytime and yet still I just wander... And get taunted.

I feel like a failure at work. I'm a nurse, an RN, and sometimes I just feel totally stupid. That's probably not fair to blame on my head though. I just feel inadequate...

And God, as much as my family loves me, I can't talk to them. They just get upset that I'm upset. And then I'm sure they harbor their own anger. I mean, it's not like my husband signed on to marry "this" form of me. I can't talk to my friends because to many of them, headaches sound like... well, just headaches, that you can Tylenol for and then they go away. And talking to You is even a little hard right now because I'm upset with You. But I love You. And I need You. And at the end of the day, You are all I've got. I'm just finding it really hard to trust You...

So that's my prayer for today.

Confusion feels like a thick fog. I just need a flashlight!

Today my mom reminded me of the definition of insanity. I've been on the same two medicines (Topamax and Cymbalta) for my head for 3ish years, but yet I've had the same results. I still want to saw my head off. I've been hospitalized twice in the last 3 years for increased ICP. I'm still a hermit that lives in the dark in the quiet locked in my house missing out on LIFE.

 

My neurologist says that my headaches are not related to my brain tumor at all. He says that I have two different types of migraines. He says I have chronic and cluster migraines, both of which will subside with menopause, both of which are common with women of my age (early 30's). I have trouble believing/accepting this. Partly because I never, and I do mean NEVER, had a headache prior to my brain surgery. Secondly, because of the elevation of ICP. How is this explained??? His explanation is never really an explanation at all when I ask that. Back in September, my cerebral spinal fluid more than doubled what it should normally be and he did call what it "gathered in" a pseudo tumor. But that was it. Was that pseudo tumor in the empty hole left vacant by the removed tumor 5 1/2 years ago? He didn't seem to think so.

 

Now I know I might come off as annoyed with him, but I do have this need in me to 'people please', which is why I have never entertained the idea of a second opinion. But now hearing my kids say, "Is mom asleep AGAIN?" or not feeling good enough to do things that I really enjoy... Well, now I'm rethinking that second opinion. I'm sure too having a little bit of experience now as a nurse is causing me to rethink some things too... Maybe I'm just not quite as gullible or as trusting as I was a couple years ago.

 

And maybe I'm just exhausted. The thought that my current doctor is right and I have to live like this for another 20 + years... I just don't know if I can do that. It's so funny... I remember when people used to tell me "thank God that you lived... that you made it!" and I used to wonder. I want to live. But I want to REALLY live. I want to feel good and stay up till 10 on weeknights. I want to play with my kids outside not worried that the sun is too bright. I want to play video games with my son or card games with my daughter - able to tolerate noise and enjoy their laughter. I want to spend Saturday's cleaning house like normal mom's or shopping like other ladies. I want to pant, and do crafts like I so love. I want to ride my bike with my husband. I just want to feel good. That's all. I just want to feel good.

Hi. I'm Jessica, and I'm a funeral-zilla.

It's been a couple of years since these thoughts have plagued me. I don't know if it's just because this has been a bad week and after a week of being in constant pain I'm left feeling discouraged, but last night those thoughts, or worries, resurfaced. I dreamt about my funeral. I WORRIED about my funeral.

Firstly, let me just confess something about myself. My husband and I didn't have a wedding. We married at the courthouse, and it was probably a good thing because I surely would have been a 'bridezilla'.  Here's how I know.  In nursing school, it was a tradition for the juniors to hold a Senior Tea at the last semester for the graduating class.  I was in charge of the theme/décor.  Since the Senior Tea was to take place in May, I settled on a Garden Party theme.  It wasn't long and I was dubbed, quite lovingly I'm sure, 'Teazilla'.  However, I am proud to say that the seniors and all of the nursing instructors said that it was the most beautiful Senior Tea that had ever been put on.

This is why my funeral stresses me out.  I do not want my family and friends to plan it.  I want to plan it because I want it to be done how I want it done.  Call me, 'Funeral-zilla'!  My first stressor was (is) the music. I remember thinking to myself how I HAD to get my husband a list of the songs that I wanted played at my funeral because this was just all wrong. The music he had played was beautiful, but just didn't come close to what I wanted.  Now I don't care the reason the music is played, like whether it's played during the seating of the guests or during the slideshow, etc., just so long as this is the music that is played.  There is a man in my church that I grew up with and I love like an Uncle.  I would love it if he played the first song on his guitar and sang it.  Then there is this beautiful lady in my church that is so full of grace.  She'd be perfect to sing the next two.  I don't care what happens with the forth song, as long as it's included. 
1. I Can Only Imagine
2. Oh What A Day That Will Be
3. Jesus, I Love Calling Your Name
4. There Will Be A Day

Secondly, I want there to be a slideshow.  Perhaps that sounds vain, but I want all my family and friends to know how special they are to me.  I guess you don't need a slideshow of pictures to tell you that, but I've been to enough funerals to know how much that means to the grieving family and friends to see themselves included in the service.  In order for this to be possible, I would need to start pulling out pictures now and setting them aside for my husband or whomever to compile a slideshow when that time comes.  In my dream there were so many pictures that were left out that I would have desperately wanted there...  Knowing that I can prevent that from happening makes me feel responsible.

Next was the flow of the service.  Everyone came dressed in black.  Everyone was sad.  Many were crying.  It was really very depressing.  I don't want it to be like that at all. We could do the slideshow early on, get the tears over with, then let the speaker speak something uplifting.  I do NOT want it to be one of those generic "see, never know when you could die, better get your life right" messages.  Instead, I want it to be a heartfelt, God inspired message.  I cannot say what it should be about as I really honestly want it to be something that comes from God. And someone needs to be sure to spread the word that no one can come dressed in black. No one. If they do, I will come back and haunt them.

As I want to be cremated, there will be no graveside needed.  Instead, I want for everyone to gather together to eat and tell stories all about me. :)  And there's my vanity for ya.  LOL  The stories can be embarrassing, funny, first time we met, etc.  Only rule is no sad stories allowed!  When people leave they are to feel full; spiritually, mentally, and physically.

I want the service to be at my long time church, the church that I've been raised in and I still attend.  I want my ashes spread out at Panama City Beach by my family because that place has so many happy memories for me with each of them. 

And that about sums up how I want my funeral.  I don't know if it will happen next year or in 10 years or in 50 years, but when the times comes, like a true funeral-zilla, I shall be ready.

Being angry with God

Growing up, there were two things that I always heard. 1. You never question God. 2. You are never, ever angry with God. After all, you are to have the fear of the Lord... and faith.  As I have gotten older, and lived many of life experiences, I have found that both of these things are complete bullocks.

I do think of myself as a woman of faith, and yet I have certainly questioned God.  After all, His ways are far beyond mine and I rarely understand them. Many of my examples in the Bible also questioned God at one time or another. Think of John the Baptist. While he was eating bugs and living as an outcast, Jesus was hanging out with all sorts of "lowly" types drinking wine and eating nice spreads of food. John questioned. (Matthew 11:2-3)

But then there is the issue with being angry with God. Now, I have all sorts of personal opinions about this. One would be that if we are to have a relationship with God, wouldn't anger only be a natural feeling to have at one time or another? I just think of anyone in my life that I am close to and I can certainly think of times that I have felt angry with them. I would think that the key would be to be angry and sin not. (Ephesians 4:26) But personal opinions aside, there are also Biblical examples of people that felt upset with God.

Let's look at Jeremiah.  This guy was called to be a prophet at a young age and for years and years and years he was extremely faithful. And yet, by worldly standards, his ministry was a failure. He prophesized for 40 or so years warning the children of Israel, hoping that they'd change their ways and turn back toward God, and seemingly his cries were scattered in the wind. The Israelites didn't change their ways in his lifetime... Jeremiah didn't lead them into a massive repentance. There were no fireworks during his ministry, in fact quite the opposite.  He was often thrown in prison, talked about, laughed at, etc.  And yet he kept warning and they kept living in their same ol' rut.

And throughout the book of Jeremiah, we can see his frustration with God. In Jeremiah 20:7, he literally tells God, "O Lord, thou hast deceived me, and I was deceived: thou art stronger than I, and hast prevailed; I am in derision daily, every one mocketh me."  All God had been telling him was that destruction was to come to the children of Israel and how they should change their ways, and yet poor ol' Jeremiah felt deceived by God. Jeremiah the prophet felt upset at God! Jeremiah didn't understand God.  If he could fell those emotions, then surely it's okay for me to feel the same way...

But there is something to say for Jeremiah. Actually, a couple of somethings.
1. He didn't pretend like everything was A-Okay.  He was hurt at God and confused and rather than try to bury the problem, he told God exactly how He was feeling.  It's not like God didn't know anyway. And what's amazing is that God didn't strike him dead!! God didn't get mad at him for feeling angry.
2.  Further in Jeremiah's prayer, he said, "I will not make mention of him, nor speak any more in his name. But his word was in mine heart as a burning fire shut up in my bones, and I was weary..." (Jeremiah 20:9)  He was tired. He was hurt. And he thought about giving up. He'd even said he was going to give up. But he just couldn't. And he didn't. Instead,  Jeremiah kept on keeping on.

There are probably all kinds of other lessons in this illustration, but these were the 2 that really spoke to me. It's okay if I feel angry. It's okay if I feel upset with God. But God wants me to TALK to Him about the bad times just like I do the good times. And even when I feel like throwing in the towel, I've got to just keep on keeping on. And in the meantime I can be grateful that I can cast ALL my cares on Him...

angry rant

I hurt. head wants to explode. it's Saturday and my stupid head has stolen my day. i'm miserable. i'm mad. this is no quality of life. it just sucks. the end.

Personality Changes

Yesterday my mom and I were talking about how our personalities have changed since our near death experiences. I have certainly noticed changes in my mom, and I have noticed changes in myself too over the years, but it was still odd hearing her say that she's noticed differences in me too.

I don't think it is possible to have such a life altering experience without your life being altered.  While I am thankful for the person that I am today, I mourn for the person that I once was... The person that died back on that operating table.

(Not so happy) Brain Tumor Awareness Month

So May is national Brain Tumor Awareness month. Sad that such a thing exists.

It's been 5 1/2 years and still it doesn't take anything for me to be jolted in "brain tumor" land. Just earlier I found myself doing research on my tumor, juvenile pilocytic astrocytoma. I found, and re-found, some information that I found interesting.
1. JPA's are some of the rarest brain tumors accounting for only 2% of all brain tumors.
2. Astrocytoma's are star shaped. (I like pretty things so much, even my tumor had to be pretty! LOL)
3. These tumors are typically slow-growing with excellent prognosis. :)
4. The most common site for these tumors is in the cerebellum (that's where the bulk of mine was).
5. The cause... still remains a mystery. Although, I am getting more and more convinced that the polluted water at Camp Lejeune played a role...

I miss my friend, Cliff. He was a friend that I'd made when I first started blogging. He was taken away by a brain tumor... Because he walked in the exact path I am walking, he understood... I could talk to him without fear of judgement, or worrying him, or anything like that. Sometimes, it's always best to have someone there that knows right where you are... God's like that. He always know right where you are and better yet, He cares.

Once a nurse, always a nurse. :)

So I just celebrated 1 month of working as a nurse for a doctor in a nephrology office. I am now in a doctor's office and away from the hospital!!!! This means several things - all good for my headaches.

1. Less stress. Of course the job still has stress, and a new job certainly does, but the high stress of a medical floor juggling 5+ severely ill patients was just a wee little much.
2. I get to pee!!!! While I'm sort of being funny, I'm sort of not either. Before, work would be so intense and busy, that I'd be lucky to pee once during my lunch break for the entire 12 hour shift. Keeping hydrated was a joke. I NEVER even finished a single bottle of water as I choked my lunch down. Now, I drink several bottles of water a day. Any migrainer knows that a HUGE trigger to headaches is hydration.
3. Better hours & more sleep! I get to see my kids get on the school bus each morning and I get to wear sunglasses when I drive home every day. I get 8+ hours of sleep each night now (and lack of sleep is just another one of those wretched migraine triggers.)

I have noticed that I'm feeling much better and I've even had a coupe of people tell me that I look like I'm feeling better. My only complaint is that at the end of the day, I feel so incredibly tired. Almost enough to where I'm wondering if I'm anemic. I've also noticed several unexplained bruises on my legs and my eyes look a little pink?

However, I think I'll begin a multi-vitamin and bulking up the iron in my diet to see if I notice an improvement. Also, I'd like to start walking a couple times a week. I just don't want to OVER do it, because over-exertion seems to also be a trigger for me. Shesh! Perhaps I should live in a bubble??? Nah! I'm getting this thing figured out. (; Soon, I'll be a migraine master. LOL

Well, I know where I can point my finger...

I don't remember exactly when it was, but I remember hearing about the water contamination at Camp Lejeune. This was a base that I lived as a young child for maybe a year or so in the mid '80's, as my Papi was a Marine.

I remember half listening to the information about the contamination and half heartedly asking my Papi questions about our time living there, but the one or two articles that I read mainly spoke of the victims as those that developed cancer, and largely breast cancer at that. Because neither of these applied to me, I just shoved this information in the back of my mind.

And then my husband, who currently subscribes to a newspaper for servicemen, brought me an article to read. And things changed.

The article spoke of just how long the water contamination had gone on, from the early '50's - the mid- late '80's, and how the contamination was due to chemicals from a nearby dry cleaners AND a really bad gas spill that affected the water supply. This would have affected tens, if not hundreds, of thousands of people. The symptoms that the victims would suffer included various cancers; breast, uterine, bladder, brain, etc. as well as other tumors throughout the body. The tricky part is that many of those affected would not see these manifestations for YEARS after they moved away, causing pinpointing the offending agent very difficult if not impossible.

The part that really caught my attention, was a young man was mentioned in the article with the exact same tumor as me.

I have always wondered what caused my tumor, and have often asked, fearing that my children would be at risk for developing the abnormal cells in their brains as well. Now, I guess I know.