In Memory of Brian....

You don't realize how precious life is until you realize how quickly it can be taken away.

My good friends Tara and Josh lost their father suddenly September 12th. And when I mean suddenly, it was just that. One minute he was here, then next, he was gone. Tara, Josh and I haven't talked much the past few months, you know how life gets busy and we forget who is important in our lives, but the minute I heard about the loss, I knew I had to be there. Whatever was going on in my life had to be put on hold because this is way more important.

They had the ceremony yesterday and it was absolutely beautiful. Josh and Karen (their mother) spoke about the love for Brian and how they will miss him greatly. Many of their loved ones came to the service and it was so amazing to see all the love and support surround that family.

After the ceremony, when I was alone in my room, I got to thinking: what is so important in my life that keeps me out of touch with the people I love? The answer: nothing. There is nothing in this life more important than God, family and friends. We get so caught up in the day to day things that we lose sight of what's important. We get mad at people and stop talking because of stupid reasons. We forget to call someone because we get "busy" with little things. The death of Brian really shook me up and made me realize that "life is but a vapor, which appears for a while, and after that, vanishes(James 4:14)."

So in memory of Brian, I will reach out to loved ones I have lost contact with. I will spend more time laughing and telling jokes and being surrounded by loved ones, then worried about money and time. We don't have a long time on this Earth, and we don't want to one day, on our deathbeds, realize that we should have worried less about work and more about love.

Thanks Brian, for making me realize what's important in life. I'm sorry that it took your passing to make me realize this, but I promise I will enjoy what time I have left on this Earth.

-Liz

Long time no....blog?

I just realized that I haven't updated this since July! My bad, but I'm sure I have kept everyone updated through my FB/Twitter, but to keep in the spirit of this blog, I shall update.

Since July, nothing much has been going on with my health, though I have been having some issues. Been trying to get my cortisol tests done and turned in, but it seems that every time I turn them in, there is something wrong or something that I was supposed to do but no one gave me instructions. The first time, no one told me I had to label the times and dates on them (they are all midnight tests, I mean, really?) and then they were supposed to be refrigerated if I couldn't turn them in in 24 hours so they gave me the second set of tests and I did them 3 times at random times over 2 weeks. So after that, I turned them in and had no problems checking them in. Then a few days later, I got a call from my endocrinologist's office saying that the lab couldn't accept the samples because they were too old. NO ONE told me they had a shelf life! All they said was, "if you cannot turn them in within 24 hours, put them in the fridge." That's it. Do these people know wtf they are doing? I mean, seriously. So I have to watch for my lab slip and do this again FOR A THIRD TIME. [insert string of profanity here]

Anywho, besides the stupidity of the lab people, I have been cleared to work again! That's right, Liz is back in the work force and back at CFA! I started work last week and worked two days, 4 hours each. Just slowly easing my way back into working without completely overwhelming myself. It's nice to be back out in the public, seeing people and interacting. I didn't realize how much I missed it until I couldn't work anymore. So I'm pretty excited about it :)

On some not so great news: I went to my doctor to talk about my sleeping issues and I got on the topic about the "menopausal" like symptoms I've been having, and I asked him if it's possible that chemo could have pushed me into early menopause. The response? "Oh hell yes!" I guess the type of chemo I had, it's a very common symptom. I mean, I knew that there was a chance that it could happen and I got the speech before I started chemo, but I was 22 at the time, I wasn't fully thinking about infertility or anything like that, I was just trying to survive. So I have to finish my last cycle of birth control, then go two months off it before I can get blood tests to confirm it. So there is still a chance, definitely praying.

And I think that's about it for today, not much like I said, but I will try and update this more often. Until then, see you on the flip side.

Test results.

So got most of my test results back from the endocrinologist in Gainesville. As of right now, there is no evidence of Cushing's, but there is evidence of a tumor somewhere in my endocrine system. More than likely, it's looking to be in the adrenal glands (which are located right above the kidneys) because my ACTH hormone tested extremely low, which is a sign of adrenal gland failure. Also, I was told by my doctor that I need to try and avoid any type of unnecessary stress in my life. Apparently, my blood pressure has been testing higher than normal lately and they are worried about the effects it could have if I do indeed have adrenal failure. It's going to be hard considering I stress out over the dumbest things, but I'm going to do my best. I'm not going to put my health at risk over unnecessary anxiety, so we'll see how that goes.

Other than that little tidbit, life is going okay. Hoping to go back to work and school next month, but I'll know more after I submit my cortisol testings I've been doing. We'll see, we'll see.

-Liz

Current events.

I haven't really been talking much about my recent health issues online because I think some things should be kept private, but since this journal is about my health issues, it's time to update everyone on what's been happening.

As I stated before, I started seeing an endocrinologist in April after my neurosurgeon suggested I get my pituitary gland checked out. Now from a technical standpoint, she was through. She ran all the tests that she could. On a personal side, she was not a great doctor. She was very distant, not really attentive and didn't even bother to examine me when I had my ONE office visit with her. She didn't look at the marks or the lump or the loss of hair. She took my pulse and listened to my lungs and that was about it. Then she sent me off for all my blood tests and MRIs and whatnot. I already stated that it took FOREVER to get the results and even then, they weren't clear. Finally I just had enough and kind of resigned myself to this life of mine.

Then one day, my mom was watching TV and came across the show, "Mystery Diagnosis" and there was a lady on there talking about being diagnosed with Cushing's Syndrome. My mom noticed immediately the similarities between her and myself. The lump of fat between the shoulder. The weight gain in the truck area. The skinny arms and legs. Even the skin tags around the neck. The similarities were just too much to ignore. So my mom told me about it and told me that I should research for a specialist in this area because I wasn't going to get any care here in Brevard County. So the first place I went to was University of Florida, since I got my oncology care there. I found a neurosurgeon that specializes in pituitary tumors who also works with an endocrinologist on Fridays. I sent an email to him and expected to hear from his secretary within a week or two. The next day, my phone ring and it's a Gainesville area code. Thinking it was my oncologist, I picked up and it was the neurosurgeon I emailed yesterday. The doctor actually call me himself and spoke to me about my issues. He agreed that things weren't right and wanted to see me. So I made the appointment July 2st to see him and the endocrinologist.

I went up to Gainesville on July 1st because I had to see my oncologist for my checkup. I got AMAZING news that on the cancer side, my health is all clear and I have graduated to once a year checkups! Then my mom and I spent the night and got ready for my appointment the next day. So we get up there at 11am and sign in and all that jazz and the next comes out to call my name. It ends up being my Uncle Basil! He's an LPN that works in the neurologist office. So we got to catch up with him while getting checked in. Then we saw the neurosurgeon, Dr. Roper. He was very polite, looked at my MRI, listened to my symptoms and checked me out. He does agree that the pituitary is a bit swollen but it's nothing severe yet, so that's good news. Then I saw the endocrinologist, Dr. Oliver, who again, listened to everything I said, looked at pictures I provided, read my list of symptoms, even looked at all my marks and made me take my hat off so she could see the hair loss. She does admit that something is not right but warned me that Cushing's is very hard to diagnosed and sometimes it takes years but she promised to do everything she could to find an answer for us. She had my labs redo because the lab down in Melbourne completely screwed them up and none of them made sense to her. So I got my blood drawn, got a prescription to get my cortisol tests at a different lab down here and went home.

Then about two days ago, my oncologist office called with my PCR results (leukemia test) and that came back great but she then told me that my ACTH is very low and to let my endocrinologist know about that. That's got me nervous because a low ACTH points to adrenal failure, which is caused by a tumor. But I called the office and let them know about it so we'll see. I get my first midnight cortisol testing kit on Monday. I have to do it three times at random days and send them in.

I feel better knowing that I'm in the hands of specialists. They are in the top of their fields and I know that they will find out what's causing all my symptoms. I am hoping and praying that by this time next year, my health will be MUCH better or at least we'll know what we are dealing with.

Envy.

"Now godliness with contentment is great gain. For we brought nothing into this world, and it is certain we can carry nothing out. And having food and clothing, with these we shall be content." 1 Timothy 6:6-8(NKJV)

Truth be told, I don't even know where to begin on this subject. I feel like my head is just so full of thoughts just wanting to be written down that I might explode. This is the reason why I am awake at 6am, because these thoughts won't let me sleep.

I've been dealing with envy for the past few weeks, okay my whole life, but it's really been evident in the past few weeks. I have been very upset at why certain people all granted certain things, while others are dealt nothing. Why does this one person get everything that I could desire while I still here looking on? The answer came to me tonight, in some random blog that I happen to stumble upon. It was like God reached through the monitor and slapped with across the face with this reality: we don't need these things. That's what they are: THINGS. They are tangible, temporary pieces that will eventually wear out, break, and become obsolete.

Regardless of what your belief is in the afterlife, the same truth applies to everyone: we cannot take all these things with us when we die. That means I cannot take my shiny new Blackberry or you cannot take your brand new BMW with you. When you die, you die naked and alone. Your status and what you owned in this life means nothing when you are toe tagged and put into a freezer. We are all treated the same in death.

There is a saying that "the road to Hell is paved with good intentions" and that's so true. Good natured, well meaning people have good intentions about starting something. They want to volunteer at a soup kitchen, or they want to donate money to a local charity. But it's a slippery slope if we aren't careful. Soon, we will start bragging about how many hours we spend at the soup kitchen or how much money we've given to such and such charity and the focus becomes on you rather than the good works. You start looking around and seeing if people are watching, making sure they see how good of a person you are. And I will be the first to admit, I have done this and am very guilty of it. Everything that I have spoken of, I have done at one point or another. It's human nature and it's what society teaches us. Have the best car, the most up to date phone, name brand clothes, donate the most money and make sure everyone knows about it. That's not the way it should be.

I'm tired of trying to stay up with the latest everything. I'm tired of having arguments over Apple vs. PC or republican vs. democrats because it's just meaningless. I will bet everything I have (which is a $1.50) that when we get to the end of our lives, and whoever we think is going to judge us, I doubt they are going to ask, "now, what was your political affiliation?" because it doesn't MEAN anything!

Do good in this world but don't look around and see if others are watching. Do it because it's right. Volunteer to help with the Gulf Coast rescue, donate money to an organization that means something to you, go on missions trips, visit a shut in, give money/food to a homeless man, do whatever you can to help the earth and the people in it. What I am trying to say is, stuff is meaningless and to argue over it is even worse. I'm not preaching here, this is mostly a revelation to myself. I'm not a saint, never claimed to be one, but I'm going to try and focus on life and the people in it, not the things. Because that is what this life that we are given is about, what we do with the time here on Earth. If we focus on status and technology, we have wasted our lives. Is it nice to have things? Sure, I'll agree. Should it be the center of our lives? No. And that's where mankind as a whole lost its way, we shifted the focus from others to ourselves.

It's time to switch back, don't you think?

Advocacy.

Tonight I was sitting in my room, putting together my folder and all my information that I will need when I see the specialist next month, I started thinking about advocacy.

Many patients (I was including in this) take their doctors' words as gospel truth. Doctor tells us it's just a sprain, we listen. If it's just a cold, we fill the prescription and think nothing of it. But what happens when the doctor is wrong? Doctors are human as well and though they may know more about the human body than we do, they do not know more about YOUR body than you do. But it's one thing to be in the waiting room and saying to yourself "I will get some answers!" It's another story when you get into that tiny white room and the doctor rushes in, half listens to what you say, says its this, fills a prescription and is out the door before you even have the chance to finish your speech. Then you are left wondering, "what just happened?"

Let's just be completely honest: most doctors are assholes. They could honestly care less about you and the issues that you struggle with everyday. They forget about you the minute they walk out the room and vaguely remember when they see your name on the folder. He has seen 20 other patients before you and probably has another 20 to go after. Most doctors don't take the time to listen, to actually listen to your issues, because they don't have the time. They have a quota to meet and the faster he gets you out of the room, the faster another patient can get in there. It's a harsh light, but it's true. This is the medical system today.

This is where patient advocacy comes in. This is where you take control of your health and you get the answers that you need. No one else but you knows what is going on with your body. No one else has to deal with the issues that you have to deal with everyday. No one else is going to come to bat for you but you. So I have some suggestions that will help on your next visit:

-Write every symptom down. I mean EVERY SINGLE ONE. I don't care if you think it's insignificant, nothing is insignificant. Write everything down.

-Every time you have lab work done, ask for a copy of the lab report. You can do it by asking the nurse in the office. Put all of them in a folder so that if you have to go to another doctor, you don't have to worry about them getting lost in the system. Same with MRI reports, CT scans and other tests.

-Write down every medication that you are prescribed. Make sure you get the dosage and how often you have to take them.

-If it's feasible, get a copy of your medical records. Now, my hospital charges a $1 a page so I can't do it, but if you can get away with it, do it.

-Take pictures. I know, sounds odd but if you have had changes to your body, take pictures of them so that you can show them when you have your doctor's appointment. Sometimes, whatever is bothering you may show up but disappear when you see a doctor, so I urge to take pictures.

-Lastly, don't be disrespected. Your doctor has no right to treat you with anything less than respect and if you do not feel comfortable with the level of care he is providing, confront him, if he refuses to change, find another doctor. Just because you are sent to that doctor, doesn't mean you have to stay with that doctor. It might take going to different ones to find a doctor that will listen to you and help you find an answer.

You are going to have people that will call you crazy, a hypochondriac, a faker. You will have people that will say, "it's all in your head" and look at you like you are crazy and you might feel like that somedays, but don't let them get you down. You know your body better than they do. They don't have to live with it, you do. It's not about what others think, it's about your health and if you are committed to getting better, then you will. It will take being assertive, persistent and down right annoying, but the outcome is gaining your life back. It's worth it in the end.

Storms.

So today, as I was heading over to beachside to babysit my nephew, a storm was rolling in. I ended up snapping a few photos because the clouds were just amazing looking. As I was looking at the pictures, I was reminded of a lesson that I learned as a child.


Every single one of us, at one point or another, will face a storm in our lives. When we are first faced with them, it seems ominous, dangerous almost, and automatically, the "fight or flight" instinct kicks in. But for the most part, we have to continue on the path knowing that there is going to be rough weather ahead. Even the ones that turn around and go another path, will eventually run into the storm. It's inevitable, like death and taxes, we are going to run head first into a storm. So we put on the wipers, turn on the lights and brace for whatever God decides to throw at us. At the beginning, you aren't sure what is going to happen. Will there be hail? lightning? rough winds? Sometimes in our minds, we make the storm out to be bigger than it really is. Sometimes, the storm blows right over us and we let out a sigh of relief and continue on our way.


But sometimes, the storm is much worse than you anticipated. It's alot darker than you thought it would be, and the rain is coming down in buckets. You have your wipers up as high as they can get, but it's still not fast enough to clear the windshield for you. You put on your brights, turn on the hazards and inch down the road, hoping the the rain will let up just enough so you can see where you are going. Then the lightning starts popping around you and the wind is making it hard to stay in your lane. You're white knuckles on your steering wheel and going 20 down a 45 but nothing seems to help. The storm is getting so bad that you have to pull over, you have to take a break and stop. So you pull over, peel your hands from your steering wheel, and pray that the storm moves by fast so you can get back on the road.

Finally, you see a break in the rain and you are starting to see a bit of blue sky patches here and there. You make the decision that the rain has let up enough that you can continue on your way. You put on your turn signal and get back on the road. Then you look up in the sky and see the most beautiful sight: the sun. Then you realize the storm is finally over.

This is life. And every single one of us will face a storm. And when you are in the middle of the storm, you think that it will never get better. You white-knuckle through it with your wipers on at full speed but the problems just keep coming down. You feel hopeless, scared, panicked, and you just need to "pull over" and take a breather before you attempt to get any further. But eventually, we need to get back on the road because we can't stay on the side of the road forever. We have to keep going, we have to move on.

If you are facing a storm in your life, whether it be health concerns, death, failing relationships or family issues, just remember this. No matter how bad it gets or how hard it rains or how never-ending it may seem: The sun always comes back out. Always.