"is beyond frustrated!! I can't even get to it all on this stupid status. Eric is upset. My mom is upset. I told them both I could fight my own battles. Long story short, no one knows the results of the second MRI. The nurse from two weeks ago was just reading off the first MRI. UGGG!! I could have a terminal tumor and no one knows at this point. :0(" {Facebook status from June 14, 2010}
"Little more info for ya now that I've calmed down a little. Went to the eye dr at Gailey today. Eyes/pressure are about the same. However, he asked if I had heard from the neurosurgeon and did he schedule another MRI. Yes...did have the MRI done. No...have not heard a word from him." {Facebook status from June 14, 2010}
"Other than being tired and a little frustrated over the way things are, I'm actually feeling pretty good physically. Headache is just a 'ghost' pain right now. My eye sight isn't too blurry. I always pray every night that I'll wake up and be completely healed. If this is the closest I get at this point, I'm not complaining! :0)" {Facebook status from June 15, 2010}
"To all my FB family and friends: I promise that I will call the neurosurgeon's office tomorrow in the morning. If worse comes to worse, I will demand from Carle itself a copy of the MRI and I will go pick it up myself. I know I have a right for that copy. Problem might be having to wait even longer, but it is a start. Any other words of advice? I'm just so lost as to what to do here..." {Facebook status from June 15, 2010}
"Feeling better now. Really had a melt-down tonight and over the silly dust pan being missing. Isn't it silly how I can hold it together for the 'tough' stuff and then lose it over something stupid? I keep telling myself all this too shall pass. And as my favorite fish Dori says in Finding Nemo "Keep on swimming. Keep on swimming. Keep on swimming." :0)" {Facebook status from June 15, 2010}
"Good news: Got call from PCP who talked to neurosurgeon and got second MRI report today faxed to him. Looks like there is no mass on the brain. So, likely diagnosis is the psuedotumor. Now just to wait to see what the other dr from Carle will say. She will be able to help if it is a psuedotumor. AHGG! Feels like I've been on a rollarcoaster the last six weeks." {Facebook status from June 16, 2010}
"Personally, I think I've had this since Jillian's horrific pg. It wasn't until I was driving tons with EI that it probably aggravated it causing all those migraines. My theory is the gall bladder surgery somehow re-aggrevated it causing more fluid and the eye problems. Now to get serious and get it taken care of." {Facebook status from June 17, 2010}
"It is safe to say that I am an angry dieter. YEP! Trying to eat right and watch what I eat makes me angry because that is one of the emotions I stuff down with food. I think it is one of the reasons I give up because I do not like to feel anger. :0(" {Facebook status from June 23, 2010}
"is sure you don't want to know how I'm feeling today. Not being able to eat your emotions away doesn't make for a happy camper. Just don't make the mistake my mom did and call me. LOL" {Facebook status from June 23, 2010}
"Oh Dear Jesus PLEASE help my attitude!! My son is whining and crying over silly things and is getting on my nerves, but am in charge of getting him to his ballgame 30 min away. I know you have given me tons of patience because I'm not in jail nor has DCFS came to take him away because of me losing all control with him.I just need some calmness so the above mention doesn't happen either before or after his game. Amen!" {Facebook status from June 24, 2010}
"is having the worst headache!!!! Haven't had one this bad in a loooong time. Vicaden, migraine meds and other OTC isn't touching it. Praying it settles down soon or will be heading to the ER. Feeling a bit better since I finally got on FB." {Facebook status from June 27, 2010}
"Please pray for us. Eric and I have a big decision to make. What we will decide in the next couple of weeks will greatly affect the family. We want to do what's best for us, but we want to make sure that it is God's will." {Facebook status from June 28, 2010}
"Frustrated is just not the right word right now. I'm worn out. Gonna lay down and take a nap.
:0(" {Facebook status from June 29, 2010}
"PCP put me on new antidepressant today. Maybe it will make my life better. I'm just frustrated with so many levels of my life right now that it sure can't make it worse, or can it? LOL At least after tonight no more ball games. Win or lose, I'm proud of my bubby and his team!" {Facebook status from June 30, 2010}
"Before April 19th, my life was clicking into place. Things were looking up. I had accomplished a huge goal. Now, I'm back to the old depressed person that existed around December. Nothing seems to be going right and nothing seems to be clicking into place. I'm back to feeling lost and insecure and 6 shades of crazy. *sigh*" {Facebook status from July 2, 2010}
If you haven't noticed before now, I am on Facebook a lot. I am a person that needs to express herself and have used journaling in the past. For me, this was a way to journal. The downfall was that it was done in front of the friends on my friends list. I had set up my privacy so that it was as private as Facebook would allow. However, this "spilling" of my anguish and life did not always bode well with others. My frustration, anger, depression was confusing and for lack of a better term, frustrating to other people.
Just weeks before, I had such a "tangible" problem. A huge brain tumor as grotesque and horrible as it sounded was something that people could grasp and relate to when they thought of medical issues and future problems. What I had going on was or seemed so minor and petty to some. I was still walking, talking and breathing. I have always respected the medical profession. Sometimes I respected them to the point that I would never question their judgement or what advice they would give me. If they waited, I would wait. If they handed me medication, I would take it as the package instructed me. If they said that I was to have a proceedure, I would do it. If they said to be here, I would go there. I very rarely said "no" to anything up to this point. Every doctor has each patient's best interest at heart, right?
So, to have this rare disease or to have a tumor or to have nothing at all but my own crazy, mixed up world was so frustrating. I hurt so bad and nobody could feel it or see it but me. All I wanted was validation. Yet, I'm not sure sympathy or what I was getting was the validation that I needed. I was so confused and torn. I didn't want to be sick. I didn't want my life to be falling apart. I really didn't want to be depressed and frustrated. Most of all, I didn't want to be in pain.
We live in a society that doesn't want to hear all the "bad" stuff. It is the bottom line. We want everyone to be grateful and happy with what they have. We don't want people to talk about their grief or their afflictions. Most of the time, it is hard for us to know what to say to them. When a woman in her mid-30s says she is in pain but looks healthy other than being obese, we want to question her integrity. She seems to live in a world where medicine is available. Our brains have a hard time wrapping around the concept that if we don't or can't use or 5 senses that maybe it doesn't really exists. Or there is the age old advice that tough love might cure all that ails us. If you just "stick it to them", point it out, be blunt that it will bring them to the right frame of mind. It's the old "she just needs a good butt kicking" mentality that makes us sometimes one of the harshest critics to one another. While I got a good dose of sympathy from people during this time, I also got a good dose of the other "tough love", for lack of a better term, as well. On top of the pain that nobody could really feel but me, this did not help anything when it came to the anger I was already feeling. I was my own worst critic and I had others knocking on my virtual doorsteps telling me that I was "lazy" and "depressing" and a "hypochondriac" amongst other things.
I started researching this disorder called Pseudo Tumor Cerebri or Intra Cranial Hypertension. I was looking for books written by people who were living a positive lifestyle. Anything or anyone that said I was going to come out to the other side and be the victor. I knew only one other person who had this disease at this point in time. She was living a good life. She seemed positive. She never spoke of this craziness or anger or frustration. I felt so alone in the world. I couldn't go to many of my children's baseball games because of the headaches. I couldn't go out much in general. Was I destined for a life of living in my bed? Sleeping the day away and not knowing what the night would bring? I was already angry at the world. Angry at my doctors. Angry at myself. I was an intelligent person. I needed to know where I had gone wrong. Nobody really understood. They tried to understand. They tried to listen but they didn't understand. All I wanted was to either be healed and live life again or to die. One or the other. There was no middle ground. There was no in between. There was no other option. Fix me or completely break me.
When I was a little girl there was a machine that if you held it really tight it would tell you where you fell on the Love-O-Meter. You put your quarter in and squeezed. It was so much fun because you always needed to know where you fell on the Love-O-Meter when you are 10. Yet, during this time of my life, there was so little love going on. No Love-O-Meter for me. People were probably praying double time but all I felt was anger which turned inward became depression. I needed Light so badly. I needed someone to say "I was you and am you. I am still you but I am happy and living and breathing." I needed the me I am today. I told my husband in a moment of such utter dispare that I felt I was falling into an black hole that has no end. I was falling and I didn't know when I would ever find my way out. I think that was the first night he was ever really scared for me. July 23rd was coming but it still wasn't dawn for me yet. At that point in my life, I don't think I even cared if daylight ever would come again.
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