Ready to give up!

I'm so tired of my life...if that's what one can call it. I'm struggling to survive. The noise level is unreal and my brain just can't handle it. My grandson is living with us. He's 12 and my responsibility. I moved him in here in June because it wasn't working where he was living. Now, I understand why he's the way he is and why I ended up with him almost 2 years ago. He's a good kid. He just needs love and guidance...someone who understands him. He's smart...asks questions all the time. Maybe that's what frustrates his step-dad so much.

I need a place of my own. I need someone to help me with day-to-day life...paying bills, fighting with Hewlett-Packard, fighting with the disability insurance company. My brain literally will not wrap around any of it...and now, I'm looking at not only taking care of myself, but caring for my grandson. I may have to place him in foster care.

I simply want to run off and hide from the world. There's this place inside my head...on the AN side, of course...where I like to curl up and hide from life. It's like my own special place. No one else can come in. I simply want to be alone with myself. I can't deal with life. I wonder what happened to the happy, carefree, laughing person I used to be. I wonder if she will ever return. Maybe she's gone forever. I'm not sure life is worth living without her.

I have no friends...my family has deserted me. It's been months since I've talked to my other kids. I had surgery this week and I haven't heard from either of my younger kids. As long as I stay out of their lives, they're happy. I often wonder what I ever did to deserve this life. I love my kids more than life itself. No matter what they say or do, they are still my kids. Even though I live with one of my daughters, I'm still pretty much on my own. We simply coexist.

My eye is all swollen again this morning. The eyeball is bloodshot...it looks so gross. I should have kept ice packs on it yesterday. I stayed in my room all day...avoiding the chaos in the house. I've lost my way...maybe God has lost me too.

Ready to give up!

I'm so tired of my life. I no longer have the ability to

Eye Surgery

Wow! Can't believe I haven't written anything in weeks. I had my eye surgery this week. My face looks so much better. My smile is starting to come back. Life looks so much brighter his week.

Dr. Frohner got my meds straightened around. My depression has lifted. Thank God! I'm always so aware of when I'm sinking into that dark pit so I try really hard to find the reason. So many times, it's medication, but other times, it's simply the stress of life.

Depression. Panic Attacks.

I hate days like today. I'm struggling. My depression is back. I hate it! I want my life back. I want to be happy again. I woke up Saturday morning with thoughts of suicide. I would never do anything like that. I've thought about it before. I think we all do at one time or another. This time it was different. It almost beckoned to me. I dismissed the thoughts immediately, but the fact that I had them seemed to stay with me all day.

I thought I was doing so well. I've been taking my effexor and it seemed to be helping. I ran out a few weeks ago when my insurance was canceled by HP. I had the doctor give me a prescription for the generic form. I had been taking the brand name in a timed release form. The generic isn't timed release. I have to take it twice a day. It seemed to be working OK...maybe better than the name brand one. My insurance was good again so I asked the doctor to put me back on the name brand. I'd been on it a week or so. Now, I was having thoughts of suicide. I blamed them on the effexor...the name brand version. I quit taking it. I've been back on the generic since Saturday. I thought it was helping. Maybe not.

I have an appointment tomorrow morning with my family doctor. I'm going to talk to her about it. I also called my therapist from last fall. I want to start seeing her again. I need her to help me find an advocate. I get panic attacks whenever I have to deal with people on the phone. I don't know why it upsets me though. I will sit and cry about it and never pick up the phone. I dread having to deal with the idiots at HP, Sedgwick CMS, and HP's COBRA area. They keep passing me from one to the other and it's a never ending cycle. They never talk to each other and I never know when one is telling me the truth or not. It's like each group knows only their area of expertise...when they cross over, they are all lost. All I want is one person to talk to...one person who will say this is what I need to do to keep my disability and my medical benefits...one person who knows my situation, understands it, and understands HP's policies regarding it. Why is that so difficult?

I need an advocate! I can't deal with this anymore. It upsets me and makes my depression worse. My therapist will help. She will know where I can turn for someone to help me through the bureaucracy of corporate idiocracy. Endless voice mail systems, email...doesn't anyone talk on the phone anymore? Why do I have to deal with computers and people who don't answer emails?

I talked to an attorney. He said to start documenting everything...writing certified letters. I haven't done any of that. I mentioned to a case worker at Anthem Blue Cross that I had spoke to an attorney....5 hours later, all of my benefits were reinstated. Funny how certain words get things done. Now we're back at it. I got a form in the mail that I'm supposed to sign and return. It authorizes HP to withdraw the premiums for my benefits from my account. No letter is with it...I have no idea whether it's for COBRA premiums or not. If it's for COBRA, then I won't sign it...I'm not supposed to be on COBRA until I go off disability. I have to call someone about it. I'm scared to death!

Rough Week

It's been a rough week. Woke up a couple of days ago and again today with pain in my AN eye. Not really sure what's causing it. I seem to go through a full tube of Lacri-Lube trying to get it to 'calm down'. The eye is red and the lower lid is very sore. It almost burns if I touch it with the tip of the Lacri-Lube. I can't wait till I see Dr. Mauzolf. Hopefully, he can help me find a way to keep my eye comfortable.

My headache seems worse when my eye is inflamed also. Wonky head rules the day and I seem to have more problems with my balance. Seems the best way to deal with it all is to take my hydrocodone and sleep.

I complain about spending so much time in my room, but it's really the only place I want to be. It hurts to think. I don't have the strength to deal with every day life. The screaming and yelling of my grandkids is too much....too much noise...too much stress. I'd really like to simply go to sleep and wake up when this nightmare is over.

I still don't have an appointment with a local neurosurgeon. Michelle, my contact at their office, called yesterday to update me on what was going on. She said one of the doctors didn't want to take my case and has passed it to one of his partners. The partner won't be in the office until the 19th. Hopefully, he will be willing to take over my case. I wonder what happens if he doesn't want to do it either. I guess I can always try Omaha. Now I understand what Jeff said about finding a local doctor when he moved here from out of state.

Pain....

Woke up this morning in pain...can't seem to get rid of it. My left eye aches...not sure why. I have almost 2 weeks before I see the 'eyelid specialist'. It continues to ache tonight. I've also had a headache all day. I've been popping hydrocodone all day and it's not helping. Lots of pressure in my head.

I Missed the Fireworks!

Yesterday was the 4th of July. We went downtown to the city of Seward's celebration and got funnel cakes. Mine had Bavarian Creme on it...one of God's most heavenly delights...lol

I didn't watch the fireworks last night. I wanted to...I'd been looking forward to them. My AN eye hurt. It's been bothering me most of the week. I saw the opthalmologist this week and have an appointment to see an 'eyelid specialist' the 19th, but meanwhile, I just have to bear with it. All of the neighbors were lighting fireworks. We couldn't see them from our driveway, but the smoke was everywhere. It burned my eye terribly. When my grandkids started lighting our fireworks, my eye really started protesting. The bright flashing lights, in addition to the smoke, caused me eye to hurt so bad that I came inside and shortly when to bed.

My eye still hurts today. I keep putting ointment on it, but it doesn't seem to help for more than a few minutes. I will be glad when I see the doctor. I'm afraid to do anything more than use the ointments for fear of causing more problems. The opthalmologist gave me some lubricant gel, but it burns when I use it.

Drama Queen

Am I a drama queen? I never thought I was. Now, I'm beginning to wonder. At what point does keeping my family aware of the difficulties I face post AN surgery become a cry for attention? When does 'I'm having a bad day' sound like whining? How do I ask for help without sounding as if I'm lazy? Why can't others simply offer an arm when I'm having problems walking? Why do I always have to ask?

I've always been so independant. I don't need anybody. I can do it myself. Just leave me alone and let me live my life. The tumor changed all of that. My life will never be the same.

I'm totally dependent on my family for room and board...for the simple necessities in life. I have no idea if I have income from one month to the next. I'm on short-term disability and am approved for benefits every 30 days. I can't go back to work as I have no job to go back to. I was laid off the week before I was diagnosed. My short-term disability is through my former employer because I had surgery prior to my actual termination date. It's all such a big mess. I would love to be working, but I know I can't at this time. I'm a software developer! I have to be able to read and work at the computer for long periods of time. Right now, I can't do either for more than a few minutes at a time. How do I write this blog? A little at a time...I write it in Notepad, save it, and add more later. When it's finished, I copy and paste.

I try to ignore the constant noise in my head, but it's very difficult. Sometimes, it's so loud that I can't hear what others are saying even when they are right next to my good ear. I can't concentrate. I lose my train of thought. The noise is so distracting. I spend most of my time in my room avoiding the rest of the world. Normal noise in the house is too much to bear. It makes me very anxious. Restaurants and other public places with lots of background noise trigger panic attacks.

I am walking better. I've completed almost 3 months of vestibular therapy to help me regain my sense of balance. I no longer have to use a walker. I still wander to the right when there are no 'boundaries' where I'm walking. I need focal points, walls, the edge of sidewalks, etc. to tell me where I'm supposed to be. Otherwise, I may end up quite a ways off my desired path.

I suffer from constant headaches. I eat hydrocodone like candy. I keep thinking I'm going to wean myself off it, but the headaches come back even worse. I have to take it every 3-4 hours or else I suffer horribly. The pressure in my head is terrible at times and 'popping' my ears doesn't help. I try taking pseudophedrine, but it doesn't always help either.

I space out a lot. Where do I go? Who knows. My daughter will notice that I've left. She will make a joke to my grandkids about Grandma being out in space. They all think it's funny. I don't! I have no control over it though. It's as if the world has become so overwhelming that I simply check out. I don't see, hear, or feel anything. It's a survival thing.

I hate talking. Anyone who knew me before surgery will never believe this. I used to be able to talk forever about anything and everything and sometimes nothing. I loved talking on the phone. I love picking people's brains. It's like I'm a sponge trying to soak up the world's knowledge. Now, talking is such a chore. I have to think about every word I want to say and how I need to say it in order for others to understand it. Talking on the phone is horrible. People keep asking me to repeat what I said.

My facial paralysis has caused my lips on the AN side to simply exist. Talking through them is difficult. Saying 'B' or 'P' feels like I'm trying to blow up a balloon. Eating is also difficult. I constantly bite my lips when I try to eat a sandwich, thus I have to manipulate them out of the way before I bite down. I can't suck through a straw on that side, nor can I blow or spit. My food runs out of my mouth. I really should wear a bib.

My left eye won't close completely. The lower lid just hangs there. I have lots of tears in that eye, but they simply run down the lower lid and down my face instead of lubricating my eye. I have another doctor in my life...an opthomologist. I'll have another in a couple of weeks...an eyelid specialist. He's going to evaluate me and keep an eye on me so that my cornea is not injured. I have to put ointment in my eye every hour or two to prevent my cornea from drying out. If I don't and the cornea becomes damaged, the only 'fix' is a corneal transplant. My father had 7 of those...I don't want to do that. If the eyelid specialist thinks my cornea shows signs of deterioration, he will sew my eye closed to protect it. The thought of someone getting anywhere near my eye with a needle is enough to trigger a panic attack. Guess I'll load up on Xanax before I let him attempt that one.

Tomorrow is the 4th of July. Last year, I was in Montana at a friend's wedding. So much has happened in the last year. My trip to Montana seems like it was in another lifetime. None of us have any control over our lives. We simply live them in the best way that we know how. We have to believe that God won't give us any more than we can handle. I know that, but I go along with Mother Teresa when she said she wished God didn't trust her so much.

My 3 Month Anniversary!

Wow! I can't believe it's been 3 months since my AN surgery. Yet, it seems like it's been forever. None of this was in my plans for my life. Course, none of the last couple of years was in my plans. Even so, I'm still here. I'm a survivor!

Six months ago, I was job hunting. I was laid off from my job of 17 years last April and had still not found another. I was broke. I'd lost the home that I had lovingly designed and built a few years before. My retirement was gone. I was living with my daughter and family in a small town in Nebraska and drawing unemployment.

Five months ago, I was working. I'd found a job at Hewlett-Packard in West Lafayette, Indiana. It was a dream job...more money than I'd ever made before. They were training me on their system. It didn't matter that my computer languages and programming skills were outdated.

Four months ago, I'd been laid off again. Our whole training class of 30 people had been laid off the Monday after we completed our training. Two days later, I'd seen an ENT about the noise in my left ear. A week later, I'd had an MRI and had an appointment to see a neurosurgeon. I had been diagnosed with an Acoustic Neuroma...a brain tumor! I was scared to death.

Three months ago...I had my tumor removed. I went into surgery knowing the risks...knowing that when I came out of surgery, I would be deaf in my left ear, the left side of my face would be paralyzed, and I'd have problems with my balance. All, hopefully temporary. I could go back to work in 6-8 weeks.

Two months ago, I was facing the reality of the aftermath of surgery. No way was I going back to work so soon. Everything I had expected, the deafness, the facial paralysis, and the balance issues, had all come true. No one told me about the ongoing headaches, nausea, and 'wonky head'. I never expected to have to use a walker. I never realized that I would become depressed and have anxiety attacks. I've learned lots of new things such as there are 4 nerves that goe through my inner ear structure. One, of course, is the auditory nerve which controls whether I can hear or not. Another is the 7th facial nerve which controls the muscles in my face and my taste buds. The remaining nerves are my vestibular nerves which control my sense of balance. They are the ones that make me sick to my stomach when they are overworked. They are also the ones that cause me to 'drift' to one side or the other when I walk and make others think I've had too much to drink.

One month ago, I was back living at my daughter's in Nebraska. I'm drawing short-term disability through Hewlett-Packard and praying that I can keep drawing it until I'm able to go back to work. It's a month to month thing. I can't get a place of my own because I have no idea if I'll be getting disability, unemployment, or neither. I don't know if I have medical insurance from month to month.

Today, I have no idea what the future holds. I pray that I can keep my disability and medical insurance for as long as I need it. I go to physical therapy twice a week to work on my balance. I no longer use the walker, although I miss it when I start drifting and can't pull myself out of it. I still can't hear out of my left ear and my face is still paralyzed. Neither show any improvement. It will take time...months, possibly a year or more, before they begin to improve, if they ever do.

The biggest problem I face is my 'wonky head'. I don't know how to describe it. I have a headache all the time. The only time it goes away is when I take hydrocodone for it. The headache comes back immediately the minute the hydrocodone wears off. There's a lot of pressure in my head. It feels like it's going to explode. It also feels like someone put a huge rubber band around my head. The pressure is unreal. My brain is fuzzy...sort of like the early stages of drunkeness, but without the buzz. I space off into other worlds almost constantly. I panic at the thought of talking on the phone...of having to call someone other than a close friend or family. The noise in my ear is overwhelming. Sometimes, it's so loud that it drowns out what I can hear in my good ear. Busy restaurants, background music, kids playing, laughing, and yelling...they all drive me nuts. I can't bear to have all that noise in my life. I hide in my room most of the time to avoid it.

I don't know when I can go back to work. My 'wonky head' prevents me from staying on task and concentrating on anything for any length of time. My left eye doesn't work as well as it should since it doesn't close properly. It doesn't track the same as my right eye. The iris seems larger than the other and my vision is blurred. I don't know if that's because of the ointment I have to keep in it to prevent the cornea from drying out or if there is something actually wrong with it. I'll find out tomorrow when I see an opthomologist. Until my eyes start working together, I can't use a computer for any length of time, nor can I read very well. There's no way that I can return to my career as a software developer until I can overcome the 'wonky head' and the hearing and vision problems.

Where will I be a month from now? Probably the same place I am today. Unless something drastically changes, I really don't expect anything to change until after the first of next year. Maybe it will never change. I have to have hope. I have to trust that God will provide...that He will lead me where He wants me to go. He's taken care of me so far. If I hadn't taken the job in Indiana, I don't think I would have even known I had a brain tumor. Everything happens for a reason. I simply have to wait to see what He has in store for me next.

Wow! My Very Own Blog!

I've never had a blog before. I'm really not sure what to do with it. The dreamer in me says I'll be out here posting bits and pieces about my life every day, but the realist in me knows that I may do that for a while, but will probably grow bored with it all and lose total interest in it. I never wrote in my diary as a young girl either.

I do like to write. It's my preferred form of communication. I have a habit of saying things first and thinking about them later. Don't think that doesn't lead to lots of guilt trips. When I write, I can go back and edit out the things I didn't really want to say, add in what I've forgotten to write, and rephrase those initial statements that don't quite say what I meant to say.

Writing allows me to go on and on forever and ever about anything I want to say. God help anyone who reads this as it's a sign of what might evolve into a daily novel of nothingness.