The Other Side of the Mountain

The Road to acceptance

2010-06-29T12:35:00.001-05:00

is a long one. It is. Not going to lie to anyone or paint a nice, glossy, rosy ass picture and act like you just wake up one day, open a window, feel a breeze on your face, hear birds singing outside and suddenly, it's all better. It isn't. Same shit is still on the inside of the window and on the inside of the person.

YOU HAVE TO DEAL WITH IT in order to get THROUGH IT.

I'm going to preach about this a bit today because I need too.
And this is my blog so I get too.

I am finding that many people in my life do not want me to go through the process that I need to go through to deal with all this crap - the palsy, the odd looking face, the 2 brain tumors, and the tumor on my eye, and my slowly losing my vision in that eye. I gotta tell you - that all this wonderful bullshit has left me a bit, raw, this past year. Any given day I have a myriad feelings going on; some of them good, some of them very dark.

And here's what I think. That those feelings - even the bad ones - are OKAY. And reasonable. And right. And THAT makes a whole lotta people a whole lotta uncomfortable.

I'm not sure if it's because they don't want me to have to hurt and feel pain and be sad. Or, if it's because my feeling those things and, *gasp*, actually talking about it, makes THEM feel things or remember things or relive things and THAT makes them uncomfortable. So they want me to be quiet. To just "move on already".

Well, I'm trying. I really am. But I gotta tell you - it's hard and I am struggling. Some days a lot more than others admittedly, but the struggle is there almost daily - to some degree. And again, I say I think that is ok.

To live is to suffer, to survive is to find some meaning in the suffering.
Friedrich Nietzsche

I love me some Nietzsche - I do. He gets it right a lot of the time. If you aren't familiar with him - go get one of his books - read it now. Your brain and your soul will thank you for it. But I digress.

So yes, to live is to suffer. But the trick is surviving it and I absolutely believe that to survive it, at least for me, I have to find some meaning in all of it.

That is what I'm trying to do. Find some meaning in all of this.

For me, this process resembles a long tunnel. Once I get out the other end of it - into the light again - then I'll have made it through. But the tunnel part or the darkness, that is the grief, the sadness, the FEAR, the pain, the anger, and the absolute Rage I feel at times. But I have to go through it before I can make it out the other side. I think everyone has their "tunnel". For me it has to do with my tumors and the palsy, for others it is maybe the loss of someone, infertility, or addiction. And here is something else. Everyone has to walk through their tunnel ALONE. No one can do it with you. And no one can do it for you. You have to face it down on your own. Scary as hell - right? You bet. But, BUT it is what you must do. It is what I have to do. And I'm trying.

There are days I'm on the other side. And it feels great. And it is a step toward acceptance. But then there are days that I get pulled back IN to the tunnel. Thats ok too. I believe it is a natural part of the healing/acceptance process; two steps forward, one step back. This really seems to upset people - the people around me. It's like others think that once you've gone through the tunnel and emerged on the other side - you stay there. And maybe some lucky ones do. But I think it is more natural and real and logical that you get pulled back in or under sometimes.

Here's the trick. Recognize it when it happens. Embrace it for what it is. Feel what you must feel. All of it - especially the ugly parts. And remember that you WILL emerge from the tunnel again and into the light. Eventually you will be spending more time on the other side - in the light - than you do IN the tunnel in the dark. Maybe one day you won't ever be pulled back under again. Or maybe you will. And that is okay too. It is a process. A painful process; a struggle. And for me at least - this is how I approach it.

This brings me to the Pleasure Principle and Mr. Siggy Freud. I like Freud - I think he got a lot of things right too - especially this one. He says that the pleasure principal is universal and that it guides us in virtually everything we do, whether we are aware of it or not. The pleasure principle, in simplest terms, states that people are driven to seek pleasure and to avoid pain. In other words, we are willing to do things that will bring us pleasure and we are unwilling to do things that will cause us pain. Makes sense - right? The obvious thing here is physical pain but I submit that this also applies to emotional pain. And here's the rub. I also submit that humans will do MORE to avoid feeling emotional pain than they will to just feel physical pleasure. And this ties back to what I've been rambling on about - my attempting to go THROUGH all of this crap and how uncomfortable that seems to be making everyone around me. Well, truthfully it is making ME pretty damn uncomfortable a good lot of the time too.

So the going through it sucks. And I think it runs in the face of what, at least subconsciously, we are driven to do - to avoid pain at all costs.

But you still gotta do it - even if it hurts - to come out the other end and feel better for it. To find the meaning and the pleasure in life again, like it or not, you gotta wade through the pain. Sometimes the pain is only at your ankles, sometimes it's up to your eyeballs - but you gotta get through it anyway.

A good many people have told me that I just need to go see a doctor and "get on something to help me through it". Well, ok. Maybe. But I only agree with the pharmacology aspect of it insofar as I'm also doing the psychological work of feeling and dealing with it. Otherwise you just tossed a blanket over the pain. You did nothing to get to the core of it - the heart of the problem. If you don't get to what is actually CAUSING the pain - the pain will never go away. It just festers. Gets deeper. Harder. Colder.

And so do you.

So no, I'm not taking a pill to numb it away. Here is where, I think, most addictions come in to play - be it pills, alcohol, or some other drug. Because in drugs - whatever drug it is - you get the pleasure principle double whammy - avoidance of pain by numbing it AND pleasure from the high. You toss in a genetic pre-disposition to addiction or an addictive personality and there you go.

I don't want to go down that road.

I have to stay on the one I'm on - bumpy and rough and full of razor blades sometimes. But I have to walk it - through the tunnel and try to make it out the other side. With any luck I'll spend more and more time on the other side and less and less in the tunnel. But I have to feel this. And accept the pain for what it is if I ever hope to accept the reality of all of this.

It is what it is. I'm just trying to survive it.

Please don't anyone tell me it's time to "move on" anymore. That is just code for "aren't you over all this yet?" No, I'm not. I'm still dealing and struggling. I may off and on my whole life. Or maybe I'll be through with it next week. But whichever it is I'm trying to embrace that. And allow it to happen.

It is the only way I know how to heal.

We are never so defensless against suffering as when we love.
Sigmund Freud

Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.
Kahlil Gibran

We are healed from suffering only by experiencing it to the full.
Marcel Proust

I gave in to the fear

2010-05-29T12:03:00.002-05:00

I did.

I totally caved and cried uncle and let it win.

I've been too afraid to write about this stuff, too afraid of what it would make me feel, too afraid of what it would mean I would have to do.

That I would have to face it. Really face it. And deal with it. And accept it as my reality. It is SO much easier to hide and pull the covers over my head. Did you know that? Well, it is. But that is all bullshit. Because deep down I know it isn't right to do that. I know it. And that part of me that demands LIFE and JOY and BREATH whispers to me all the time that I can't hide anymore. Lately it's been yelling at me.

And I finally listened.

So anyone who is actually reading this needs to understand right now that a good lot of what I'm going to document in here isn't going to be pretty. Actually a good lot of it is going to be ugly and raw but absolutely true. At least it will be my truth.

I was afraid to write in here - afraid of the judgement my honesty might bring from others.
But you know what? So what. So what if I'm judged by other people reading this. This is MY blog; these are MY experiences; and these are MY feelings.

Judge if you want but you will not fully understand or stand as my judge until you have lived what I am living right now. I have one being who will judge me - just as you do - and I haven't stood in that Divine presence YET.

So here it is. There is going to be a lot of self loathing, self hatred, hatred of these bullshit diseases, hatred of my face, grief over the loss of my face, of a lot of my identity - of who I was and who I just don't get to be anymore. There is gonna be a lot of anger. If you don't like it - don't read it. These are my feelings right now and damnit they are VALID. They are a part of this experience and I can't keep covering them up. I will HAVE to let myself experience them all - fully - to ever hope to crawl out the other end of this thing. This is the place I'm going to attempt to do that.

Here's a story for you all.

2 days ago I had to take my oldest son to Dallas and put him on a plane to go see his dad for the summer. We went down the night before b/c my asshat of an ex-husband booked Alec on a 7am flight. Ya - don't even get me started. So we went the night before and got a hotel room.

We went to dinner and stuffed ourselves silly - so to let things digest before we exploded - we walked around a little out door mall and went into the Old Navy store there. I bought Alec a couple of long sleeved shirts to take with him (his dad lives in Washington state and it is still in the 50's there - can you imagine? - sorry I tend to digress)

So we were standing there checking out and the girl checking us out was talking to Alec and me. Over to my right there were 2 young guys - probably around 15 - just sitting there waiting on their mom to get done shopping. Every single time I said something - they busted out laughing. LAUGHING. And then they'd make faces at each other. It was VERY.OBVIOUS. they were laughing at us - or me rather. It was like a hard slap in the face because it was so unexpected. To be laughed at - so obviously. In public. Right out in the open.

I tried to ignore them. We got outside and Alec said - "what were those 2 guys laughing at? Seriously - what was their deal? That was really annoying." He kept talking about it because it WAS really obvious.

Now you see - my angel of a son is 12. And just like these lovely people in my family - they are so used to looking at me now they don't even SEE the Bell's Palsy residuals anymore. They just.see.me. But when I'm out in public, around strangers, they don't see ME and the me I used to be. They see a woman whose face looks a bit off but looks REALLY weird when she speaks. My mouth doesn't act exactly like it should when I speak anymore, my smile is still wonky, I have that weird dimple that shows up and moves around off center, and the right side of my face and eye do odd things when I talk - and I can't control any of it. Most of the time people out and about just stare at that side of my face for a few seconds. This was the first time I have experienced someone actually laughing at me. In front of me. At my face. At what I look like now.

It was a deeply painful experience for me.

I am crying even as I type this right now.

Do you know that I don't feel any different on the inside? Do you know that? Do you know that I still forget sometimes that I look like this? Well, I do. But then I have to go out in public and I remember. Because I see how people see me now. And it hurts.

I know it could be worse. I do. I get that.

But this sucks too.

And it is OK for me to say it.

And to feel it.

I'm still around

2010-04-30T12:14:00.000-05:00

I haven't written in here much because I've discovered that the talking about all my stuff, the bells, the tumors, my eye, etc - tends to make me more depressed.

I have a hard enough time with all of it when I try NOT to think about it.

I have been keeping myself manically busy and documenting that on my other blog. It's all bullshit. And smoke and mirrors. Anything to keep me from thinking about this shitty ass reality.

But here's a dirty little secret. I still think about it. And I still have trouble sleeping. And I still cry. All the time.

Remember how I have talked about dreams I've had and how I look like my old self in my dreams? How I still look "normal" in my dreams? Well, this past week has seen that stop. Just like last night - when I dream now and see myself in my dreams - I look like I do now - I can see the bells or in my dream it's even worse. So maybe I'm beginning to accept it? I don't know.

I'm afraid my vision is actually getting worse. I've started researching glass eyes. I'm scared out of my fucking mind.

I will say this though. I'm still thankful this is happening to me. I'll take it and then some if it means my kids get to be fine and ok. I would rather it be me. So maybe it is ok. I know I have to learn to live with it and I'm trying...well, struggling is probably more accurate. But then - we all struggle with live don't we? Some of us just have MRI pictures of our demons is all.

Ya, so this is where I am. I know I'm depressed. I know I'm struggling with all of it. I refuse to give in to it. If that means I have to strip every piece of furniture in this house and repaint it so that I'm busy and I have a goal every day - then so be it. I have to have something to look forward too - something I can physically do and channel my energy into - right now it's things in my home since I can't do jack about the things in my head.

If anyone is actually reading this - take a minute and thank God or whoever you pray too - for all the things you DO have. I guarantee you - no matter what your situation - you still have MORE good than bad.

Odd

2010-04-14T09:52:00.001-05:00

We went to my husband's office party the other night and it was fun. It was the first time I've been out of the house without the kids in a long time. And it is still hard for me to go out in public because I am very aware of how I look now. I know I look a TON better but that I'm still a bit...off. And that is ok. I have to begin to LIVE my life again. Get busy living or get busy dying right? And I'm not ready to die. Not yet. Not for a long while.

But I noticed some things while I was there.

People look at me a bit different now. Rather than looking at me as I'm talking...they LOOK AT me and I can tell they aren't listening because they are staring at my face...probably trying to figure out why my mouth looks they way it does when I speak.

I hate that.

Here's the other thing. I don't even know how many people because I lost count - but the first thing they said to me was not, hello - or hi or haven't seen you in a while...but it was, "Oh my gosh, How are you feeling????"

*sigh*

I know they mean well. I do. I get that. And I appreciate it.

BUT

and it's a big damn BUT

I feel fine.

Truthfully I've never felt bad. Well, not physically at least. If I hadn't gotten the Bell's, then I never would have had the MRI and I would not know about the tumors. I don't have headaches. I feel normal.

Physically, I feel normal.

Mentally, emotionally, and psychologically I am a trainwreck a lot of the time. Actually I'm pretty much fucked.

BUT

and again, this is a big BUT

No one wants to hear that.

They don't actually want you to tell them the truth. They don't want to hear that there are days I can't get off the floor. They don't want to know about the days I cry all day long. They don't want to talk about how afraid I am that I might die from this thing behind my eye. It makes them nervous; uncomfortable. It tends to end conversations. And then those same people avoid you for the rest of the night. My bet would be that most people with cancer have this same experience.

And it sucks ass ya'll.

If you are reading this and you are lucky enough to not have cancer and you know someone who does...if you see them - either talk to them about other stuff - like regular LIFE stuff. OR, if you do ask about the cancer - then do them the courtesy of actually *listening* to what they have to say. Authentically. They might need to talk about it. And if you can't do that then don't ask. mmmmm K?

I hate this. But then who actually likes going through any of this - right?

It's Wordless Wednesday - some pics of me from Saturday. You can still see the Bell's residuals. And that creepy ass dimple thing in my chin. I DON'T HAVE A DIMPLE IN MY FN CHIN.

10 months into Bell's Palsy

fn dimple...

lips and mouth still crooked

And because I want to leave you with something happy

My little Diva girl...outside enjoying the weather - 10 months old

Hope everyone has a good day.

you just never know

2010-04-09T23:12:00.000-05:00

I was sitting in my stylists chair today and she was busy cutting my hair and we were talking. It was a nice day, I had some time away from the kids AND I was having my hair done - something that hasn't happened since last September. I was having a good day. I thought.

And then she asked me about the tumors.

And the healthcare bill.

And I just lost my shit. utterly. sitting there in that chair - sobbing.

I think I'm doing better and that I'm processing things and "moving on" and then it just comes up and smacks me in the face. You ever see those old Tom and Jerry cartoons where one of them would grab a glove and SMACK the other one across the face with it? That's exactly what it felt like.

I don't know if I'm ever really going to come to terms with all of this. I don't even know if it's possible. Maybe the best I can do is just manage it day to day - hour to hour.

Cali earthquake

2010-04-04T21:34:00.000-05:00

They had an earthquake tonight in Baha California - 7.2 on the scale.

That's pretty tough but...well...I hope that is all there is to it. We need the earthquakes to stop.

I'm off to Big D

2010-04-04T20:01:00.000-05:00

I have a doctors appt in Dallas tomorrow so I'll be out of pocket for a day or two. I am seeing an ENT at UT Southwestern about the Bell's Palsy. After my appt with him then I see a therapist there who specializes in Bells. I don't know if they'll be able to help me at all but it's worth a shot - right? *sigh*

I am better and the Bell's is much improved...but. I still have residuals, my face is still a bit *off*, and well, my mouth is still...just...weird. Maybe it will still continue to get better. I'll see what the experts have to say and will report back.

I'm taking Piper down there with me - so wish us luck. Or say a prayer. Or both. Oh and she is 10 months old tomorrow. I can't believe she's so big. I love her more than there are words to express.

Hope everyone had a good Easter. Ours was fabulous. The trees are amazing and the flowers are gorgeous and this weekend was perfect. I am grateful.

Wordless Wednesday

2010-03-31T09:43:00.000-05:00

I'm loving that it is Springtime. It is my second favorite season, right behind Fall.

I took these pictures yesterday of my backyard gardens.

My Jasmine is all starting to bloom

And my Phlox is going nuts

My Pansies all popped back out after the last snow too

Happy Spring, Happy Wednesday!

I'm back

2010-03-29T11:49:00.000-05:00

sort of.

I intend to start blogging again but now the baby is sick so I'm thinking I am not going to have time today or maybe tomorrow to actually get out the things I want to say. Stay tuned. Hopefully I'll find time to get some things written down soon.

Break

2010-03-24T18:16:00.002-05:00

Taking a break from blogging and the internet until things in my life settle down a bit.

See ya'll on the flip side.

sigh

2010-03-08T08:43:00.001-06:00

I am afraid it is coming closer.

There was another quake very early this morning in Turkey. And yes, I know that earthquakes don't kill people - collapsed buildings kill people. But the damn things wouldn't have collapsed if the earth wouldn't have moved.

I don't know why there has to be this sort of tragedy and suffering. There are times when I am convinced that it is all random chance and just plain old bad luck. And other times I am sure it is part of something bigger; a design and pattern that is playing itself out. Today I look at the image of those women, standing outside a boarding school in Turkey that collapsed - not knowing if their children are alive, and I don't know. I am at a loss. I don't know why there has to be this kind of pain.

I want to be wrong about this.

That is all.

worries, prayers, and earthquakes

2010-03-04T11:02:00.004-06:00

I think something is coming. I know, I know, I really don't want to sound like one of those crazy people standing on the street corners screaming, "The END is near!" And I'm certainly not saying I'm psychic. But, I do think something big is coming.

I am afraid for California. I think we have been rather charmed for a long time and I am scared we are due.

I started getting worried about this a few months ago. It kept coming up on the news about how we, in OKLAHOMA, were having small earthquakes. Now, there *is* a fault that runs right through our state. We do get earthquakes here because of it but they are very small - usually in the mid 1's or mid 2's on the richter scale. And the richter scale is the only thing that even picks them up - they aren't even big enough for anyone to "feel". We average around 50 quakes per year but only a handful being large enough to be "felt". Last year we had 43 that were big enough to be felt and noticed.

They started to pick up in frequency last fall. So far in 2010 we have already had 14. Saturday we had one that measured 4.4 on the scale. Now, I realize that is not a large quake. But again, we are in Oklahoma. THAT is a big quake for us. We had another one yesterday - 2.5 on the scale. Now I'm in no way saying that I think we, in Oklahoma, are going to have a big earthquake - not at all. But I'm worried about what it means to our friends on the Pacific rim.

Here's where I digress on you. If I didn't know better, I would totally expect to run into Sam and Dean out there on Highway 77 any day now. I got hooked on Supernatural last fall. My cousin Kelli raved about it so I gave it a shot. I was hooked after one episode. I had missed the first 4 seasons and I was still hooked. Anyway they actually end up in Oklahoma investigating "things" a fair amount of the time. All these stronger earthquakes of recent days here in Oklahoma would be right up their alley, in terms of odd 'signs'. And their picture - for your viewing enjoyment. Or maybe just mine. Err, Ok - back to the real stuff.

So when you combine all of that on top of what has already happened in just the last 2 months - Haiti, Chili and then yesterday in Taiwan - I'm nervous. I'm real nervous for California. The plates are shifting and moving around. And when one moves...it creates space for the others to shift too. I want to be wrong about this. Truly I do. But I'm worried.

The only earthquake I've ever actually been in was in Chile. I was in Antofagasto, Chile and they had a small quake. If I remember right it was in the mid 5's. It was enough to shake the windows, rattle the dishes and knock some items over. It was also strong enough to cause the building we were in to "sway". Seriously - it swayed. We were on the top floor - floor 16 - facing the Pacific Ocean and the building swayed for a minute. It was extremely disconcerting to say the least. I learned very quickly that I do *not* like earthquakes. Remotely. At all. And I don't ever want to live in a place that has or could have real earthquakes.

Anyway this has been on my mind. I want to put it out there to ask the universe to cut us a break on the quakes for a bit. I would like us to keep California - I really don't want to see it slide off into the ocean. I have a lot of friends who live out there and I want them safe.

So I'm hoping and praying that things settle down. Soon. No more quakes - k- universe? There has been enough damage and heartbreak and tragedy in the first two months of 2010 - we don't need any more. Or maybe I'm delusional - I am very sleep deprived today. Or maybe I'm just crazy - I do have 3 brain tumors. Maybe they are effecting my grasp on reality. Or maybe we, as a whole, need a break - all of us.

Kindness of Strangers

2010-02-25T10:16:00.003-06:00

I had my MRI and appointment with my Neuro Surgeon yesterday. That went as well as it can when you are placed in something resembling a coffin all the while knowing they are looking at TUMORS in your brain.

Ya. So the valium helped.

I laid there in that thing and the entire time it was buzzing and clicking away I was repeating to myself over and over, "the tumors will be smaller or gone, the tumors will be smaller or gone." Over and over again for the entire 38 minutes I was in there.

I got out, got dressed and they handed me my films. I pulled the first one out and looked at it. And the largest tumor was immediately visible. Not smaller. Still there. I burst into tears.

Then we walked over to see my Neuro Surgeon. His nurse, Mike, came in first and did a lot of preliminary things with the images and then spent some time talking to me about how I was feeling.

Here are the Good Things from yesterday

The tumors showed little to no growth. That is awesome. My brain still seems 'happy' with the tumors right where they are - in other words - the tumors are not causing the brain any problems. At least not yet. Doc said again, he will take them out if I want him too but he doesn't see a reason to go in if we don't have to yet. I totally agree. People keep asking me - why don't you just have them taken out. Well, a few reasons. It is brain surgery. Things can go wrong. And anesthesia. Things can go wrong. Also, they can't get them both with one surgery. It would have to be 2 separate surgeries; 2 separate ICU stays; 2 separate recoveries. There are lots of different complications with these surgeries, anti-seizure drugs, double vision during recovery, the inability to walk and speak sometimes, not to mention the blinding head pain - lots of things. Yes, the tumors would be out but I would be recovering a long time. And I have 3 kids - 2 of them very small. I can't even begin to imagine how I would do it and take care of them at the same time. Also I would still need the MRI's every 6 months to make sure the damn things hadn't come back - because Meningiomas tend to reoccur. So again - why DO all of this until I have to DO all of this?

The So/So news

We talked about the continued facial weakness. I asked about the Bell's palsy treatment facility there and he said yes, they had one, but in truth, they wouldn't be able to help me. He explained that they rate facial nerve paralysis on a scale from 1 to 6 - with 6 being total paralysis and 1 being totally functional. He said right now I'm at about a 2. At the BP treatment facility - their goal is to get their patients to a 3. So I've already naturally healed past the point they would even hope to get me. He said the most they could do would be to put some botox injections into my right cheek to soften the hypertonicity on that side.

He looked me dead in the eyes and said, "I know you don't want to hear this, but you will probably always have an asymmetrical face. There really isn't anything else we can do to improve where it is today." Ok. So I have to just accept what it is now. But it is still really hard. You know there are women, lots of women, out there who are my age and older - who have perfectly symmetrical faces who have NEVER accepted how they look. If they had there would be no plastic surgery industry. I've only had this for 8 months. It may take me a while to totally come to a place of acceptance. I still hate it. I still want my old face back. But in spite of everything, I still have some hope that maybe it will continue to heal, if only just a bit more.

The not-so great news

He said, "My dear, medically you never want to be an unusual case. But you ARE an unusual case." *sigh* I responded that I had always been an over-achiever. He cracked smooth up. And then he talked about the tumor on the eye. Well, it is on my right optic nerve sheath to be exact. These are EXTREMELY rare. And because they are so rare there is not much data on them. There isn't that much information out there on how to treat them. And there isn't that much data out there on what treatments work better than others.

This is what they do know. If it continues to grow - it will take the vision in my right eye. He said it could take as long as 15 years for that to happen. Or it could be 5 years. OR it could just take my color vision in that eye and that is all. I will tell you that I am already color blind in my right eye. I wasn't 3 years ago but I am now. Contrast in colors are hard for me now. OR it could stop growing altogether and leave my vision as it is now.

Because this tumor is wrapped around the optic nerve it is inoperable. Also radiation is pretty much out of the question. Now, he said that if we did radiation it could improve my vision for awhile - maybe 5 years. BUT radiation of this type, at this intensity, and in this area tends to cause FURTHER tumors later on. He said if you were standing here and you were in your late 50's or 60's - I would say that radiation would be ok because those further tumors don't tend to show up for 15 - 20 years. BUT you are 37. I don't want you to have further tumors in 15 - 20 years. That is just too young. He went on to tell me that he could refer me to see some radiation specialists and they would probably recommend radiation for that eye. But he also told me to remember they are basically selling a very new technology. They don't even know what all the ramifications would be yet. He said again, in his experience, he didn't know if it would be worth the risk of the future possible problems.

Then he told me the rest of it. With no treatment I probably have 15 years or so before I go blind in my right eye. He also said though that it might not be that long or it could be longer - depends on how fast the tumor grows. These tumors can grow large enough that they can cause the eye to actually bulge out of the socket causing further facial deformity. He said if that happens - they would go in and surgically remove the tumor and the optic nerve hopefully returning the eye back to its normal appearance on the face. He said that the surgery is very tricky and difficult and that of course, I would be blind in that eye when I woke up.

It is a lot to hear. And a lot to process. In 15 years Max will be graduating high school, Pip will be in high school, and Alec will hopefully be graduated from college and starting his life. These are all things I want to see. Without having an ugly bulging eye or being blind in one eye. I wish it were all different.

For someone who is as much of a control freak as I am this is incredibly hard because there is nothing I can do about any of it.

Never under-estimate the power of Kindness

This morning at 8:10am I got a phone call from Mike - my NS's nurse. He came in and visited with us the last time we were there back in September. He remembered us when we got there yesterday. Anyway - my doctor is referring me to a NeuroOpthamologist for my eye. He said he was brilliant and they were going to call in some favors to get me in to see him. He also said he was going to go ahead and set up some appointments for the Bell's too - couldn't hurt to try. Mike called me FIRST thing this morning to tell me he had already got the referrals going. He gave me the names of the 3 different people they want me to see and asked me to call him as soon as I got the first phone call from one of the referral docs. He said he was going to take it from there and make sure that all the appointments were scheduled on the same day, or on two consecutive days, so that I could do it all in 1 trip. How awesome is that?

And then he sat on the phone and asked how I was doing with all of it. He told me about his conversation he had had with my doc this morning and then he let me talk. About all of it. He told me I wasn't crazy and that I was handling it all remarkably well. He told me that I was still very pretty. He said he knew that the Bell's was awful for me but that frankly I was pretty "genetically gifted" to have Bell's and an asymmetrical face and still be beautiful. He told me again that they were going to do everything they could to help me. He didn't have to do that. I know he was busy and had other things to do but taking time and listening was a very kind thing to do. And it made me feel like they care about me and my well being.

They are wonderful - all of them. The nurses and my Neuro Surgeon - they don't talk AT you - they talk to you and with you. Yesterday my doctor let me cry after he told me everything - told me it was normal to feel like I do, validating my feelings, and said - flat out that it sucks. And it isn't fair. But said that I was handling it all amazingly well. And he gave me a big hug as we left. I don't think you could ask for anything better in a physician and his staff. It is sad to me that this is a rare find in a physician these days but I am so blessed that I was directed straight to this office. So now we wait. And pray. And continue to hope.

Frozen

2010-02-20T08:30:00.003-06:00

Thanks to all that is sacred and holy our heater is finally working again. It went out on us the first part of last week and stayed out until Thursday night. *groan* But after many wrong parts and 2 different service people being here, my husband actually ended up being the one to get the correct sized part AND put the damn thing in - the furnace started right up. Turns out the motor that turns the fan had died.

Anyway my husband rocks.

But I am frozen. I know it's because of the appointment next Wednesday. I talked about how the closer the appointment comes on the calendar the more afraid I become here. That's what is happening again. And I also know it's the fear that has control of me which is why I can't seem to write anything. All I can think of is the appointment. And the images. And the what if's.

I am afraid. I wish so much that none of this was happening and that I was just living a normal life with my husband and my kids but without MRI's and Neurosurgeons and treatment discussions.

I want it all to go away. And I have a VERY strong desire to go hide. Crawl down into some dark hole and hide. And pretend. And hope that it just goes away. Not very mature - eh? I know. There is a rather large part of me that just does not care.

I am going to attempt to get a hold on this today. I've let it rule me completely for the last week or so but I have to get a grip. I have to take back control. I have to walk past the little holes and caves. I don't get to hide. I owe it to my awesome husband and children to stay on the path and see where it takes me.

Aye, there's the rub. Because where it takes me it takes them too. I think I hate that the most - that all of this has to happen to them as well. See my instinct is to protect them from the Bad Things. And here I am - the one who is dragging them through all of this. It is because of me that my kids know the words MRI, Meningioma, benign, malignant, and radiation and further know what they mean. But I can't give in to the self-loathing either. That is a well I might never crawl out of and that will get me nowhere.

So today I'm going to take a break from my manic state of denial - read redecorating of our house - and try to find my center. Breathe deeply. And hope I can find the strength I need to walk through this coming week. I am not daft. I know the fear will always stay with me but I just don't want to let it lead me anymore. If I have to carry it with me then I hope I can manage to put it in my back pocket. Right where I can sit on it....and maybe even squash it.

Wordless Wednesday 3

2010-02-17T08:15:00.000-06:00

Max

Happy Wednesday!!!

Today it is just too much

2010-02-16T12:05:00.003-06:00

I'm not having a good day. Actually I haven't been having a good few days.

The mountain is too high these days. I just don't have the strength to keep climbing and getting knocked down. Again.

I need a break. And I don't want to go to the damn MRI or doctor's appointment next week.

I am scared to death of what they'll tell me. I am so scared it is hard to breathe.

I need some hope. I need some courage. And I can't seem to locate either just now.

I'm still here

2010-02-12T22:33:00.001-06:00

But hubby has been out of town, I'm trying NOT to get sick and basically LIFE has happened. We have a full day tomorrow too so I'm not sure if there will be a post or not. It may be Sunday before I really have time to get back here but I have some things buzzing around in my head to say - so check back.

Hope everyone is doing well and staying warm.

See ya'll on the flip side.

Another day, Another appointment

2010-02-11T10:05:00.000-06:00

Yep - Acupuncture again today. I'll be a pin cushion in a couple of hours and I'm excited about it.

I'll check back in after the appointment. Hopefully I have similar results as last week - or maybe even better results. Here's hoping!

Wordless Wednesday

2010-02-10T07:57:00.001-06:00

Alec

so very grown up now...

Happy Wednesday everyone!

A Picture is Worth a Thousand Words

2010-02-08T12:13:00.015-06:00

Or is it?

So I'm going to post pictures of me during this journey with Bell's Palsy. This is *not* a pleasant thing to do and I'm scared to death. It's akin to walking around completely naked and hoping no one laughs. I need to do this though. I feel like this is part of my emotional healing process; me facing my fears. And right now the mirror and how others see me are 2 big fears.

So first off a before picture of me....ready?

So then 1 week after my daughter was born I woke up with Bell's. All of a sudden half my face didn't work. At all. And after about a week it looked like the right side of my face was sliding off my skull. Seriously.

I didn't allow ANY photos of me during that time because it was so awful. I didn't get the nerve up to keep a photo I took of myself until 3 months into this experience. This photo is from September 2009. I can, at least, smile by this time. The right side of my face is still obviously affected but it was SO MUCH BETTER by this time. You can tell my right eye still doesn't want to work and my smile isn't totally correct yet - but we are getting there.

This next one is from October 2009. I was 4 1/2 months in at this point. Excuse the makeup and such but this was taken on Halloween; I had a vampire costume on and full makeup (I was trying for normalcy here even though I still looked wonky.) So you can see that my right eye is getting better - it isn't totally perfect yet but it IS better just from September. However this is where we start to enter residualville. If you notice - the right side of my mouth is kinda pulling upwards and so is my right nostril. It isn't that bad here yet but this was just the beginning.

This next photo is from November 2009. Not a great picture, I had been crying right before this so my nose is all red. Again, my eye is better but still not normal. Also you can really see that the right side of my mouth is pulling upwards now, as well as the right nostril. I can't do anything about that - it is involuntary. The muscles have become hypertonic - after months of being lax now they are receiving nerve signals and pull constantly. It is way worse when I close that eye. I'll see if I can find a picture of that too. This was taken on Thanksgiving Day and at 5 1/2 months into Bell's Palsy.

This photo is from about the second week in December. Not so different from the last picture. I took it on my 6th month anniversary with Bell's. It seems I hit a sort of "plateau" with my recovery here. I am better here but still....off.

This photo is from the first week in January. I took this at 1 week shy of 7 months living with Bell's.

This is still January 2010 and is a photo (taken at the same time as the other one) of my residuals. This is what happens when I try to close my right eye. You will notice how much the right side of my mouth pulls. I have zero control over that. The nerve evidently re-connected wrong. It sucks out loud ya'll.

This photo I took last week - still a bit off but better. This was right before I left for my Acupuncture appointment. My eyes are almost the same size again. Although I think one of the damn residuals is that now instead of my right eye being too large it's actually becoming smaller than the left. *shaking head* This is the craziest condition ever I think.

And this is the same day/time but with my eyes closed to show the residuals. My mouth is still pulling upwards but not as bad and my eye is closed. Now I'm having to really try to hold my eye closed but it's so much better than it was.

This is me today. I just went and put my contacts in (I have not been able to wear my contacts in almost 8 months) and put makeup on. Still not normal yet but so much better. I see improvement just from last week. I am 4 days shy of having had this damn shit for 8 months. Here are the places I still need to heal: my mouth - I still can't pucker my lips or really control my top or bottom lip on the right side, and the top of my eye/forehead - I can't raise my right eyebrow or wrinkle the right side of my forehead.
I would like the residuals to go away. The one that causes my mouth to pull upwards and the newest one - the dimple on my chin. See it? I don't actually have a dimple but now the muscles that connect there have also become hypertonic and pull constantly in two different directions causing the weird dimple. *sigh*

BUT I'm hopeful. I'm working at accepting me the way I am. Some days I am considerably better at it than others. Today is a good day and I'm hopeful. There is improvement and I am holding on to that. Maybe. Maybe it will still come back. Baby steps. And courage in small doses.

I'm a Believer

2010-02-05T08:49:00.014-06:00

No, not the song written by Mr. Neil Diamond and made famous by the Monkees. I am a believer in Acupuncture.

I had Acupuncture done on Wednesday and here is what I can tell you about it and about me.

I HATE NEEDLES. I hate needles with a sort of fervor that borders on phobia. Whenever I have to have an IV inserted it is really a Very.Big.Deal. if I do not, in fact, pass smooth out. I still have to MAKE myself sit still and breathe deeply during a blood draw or shot. Actually during a blood draw not two years ago I DID pass smooth out.

This brings us to Acupuncture; lots of little needles sticking out of my FACE (of all places) making me resemble that disgusting movie personality Pinhead. (I hated this movie. It is the only movie that I have ever gotten up and walked out of - true story - I digress.) I should have been wigged completely out. Except I wasn't. I kept expecting the panic, the DREAD feeling to descend upon me as the appointment day drew closer: 2 days before, the day before, the day OF. But I woke up Wednesday morning and still I didn't feel it. I kept waiting for it to arrive, but no, it just never showed.

So I got there and was still relaxed and we started and she was doing deep massage on my back and shoulders and telling me I was "very blocked" and I felt a sort of *pinch*. I asked her what that was and she said, "Oh, it's the needles." I said, YOU PUT A NEEDLE IN MY BACK? She said, "Oh ya, there are lots in actually - you OK?" Shocked, I told her I was fine. I had only felt that ONE. Evidently my back was a pin cushion and I didn't even know. Before too much longer I realized she was massaging my entire back and I inquired about the needles; because how could you massage if there were needles back there? She said, "Oh, those have been out a few minutes now." Again - I wasn't even aware they had come OUT. WOW. I turned over and this continued on my face. She told me if I was scared of needles to keep my eyes shut. I did for a bit. These I could feel as they went in, well, maybe half of them I could feel - the others I didn't have any sense of at all. I opened my eyes to see little needles - like trees all around my right eye - on my eyebrow, forehead, upper cheek, and it stuck with me that they sort of swayed if I moved or spoke. It didn't scare me a bit. And it didn't hurt. On some of them I felt a pinch for literally 2 -3 seconds - and then nothing. No pain whatsoever. I also had no sense of when they were removed.

Right after the procedure was over I *did* notice a difference with my face. There was significantly more blood flow to the side affected by the Bell's Palsy (the right side), which was what she intended. And the hypertonic muscles by mouth seemed more relaxed and I could definitely raise my right eyebrow more. Since then those results have faded a bit but I have lots more hope; I believe I could see some improvement and that I will continue to see improvement. Also, the day after my back and shoulders were very sore, even so I slept very well that night and last night I got good, deep sleep. I woke up today feeling WONDERFUL. I've also been markedly more relaxed and HAPPY. I have not had another headache and my face has not hurt much since Tuesday night.

Is it the Acupuncture? Is it the massage? Is it the prayer? I don't know. It is probably some combination of the three. But whatever it is I am thankful for it. And, for a change, I feel GOOD. I really think I forgot what it was like to feel good.

So thank you - to my wonderful friends sending their prayers and energy, to my amazing Acupuncturist/Massage Therapist for her abilities, and to the Divine for allowing me to experience all of it.

Today is a musical day for me. I have always felt like my life had a soundtrack (that is another post to come) and big moments in my life have had some sort of song attached - at least in my mind. I'm going to leave you with a few words from the song that's been stuck in my head since yesterday...In the immortal words of The Rolling Stones...
You Can't Always Get What You Want
But if you try sometimes
You might just find
You Get What You Need.

Enjoy...

Wordless Wednesday

2010-02-03T16:51:00.005-06:00

love

them

Happy Wednesday!

Do you feel it?

2010-02-02T13:54:00.009-06:00

Today is Imbolc. It holds the first whisper of the coming Spring. It knows the secret that Winter will not stay forever. It is a day for New Beginnings. I'm doing what I can to acknowledge this and look forward. Our ground is covered in snow and ice still but I can see that my Phlox is beginning to perk up. And any day I expect to see the first shoots of my daffodils.

In truth, my head hurts too damn much to type anything that would make any sort of sense. The headache belabored me yesterday evening and last night too. I had a respite from it for most of today, however, it seems it is back now. It is very hard dealing with small children when your head feels like it is ringing and splitting all at once. I just wish it would stop. The pain really is something. Impressive even. I'm going to go take an Excedrin. And hope. Maybe make another pot of coffee. And hope. Try not to imagine all the could be's, yet.

The Wheel of the Year turns once more toward what comes next. I would that it was starting differently for me but it is as it is.
Another Imbolc and I am here to see it - this time with a daughter in my arms. This feels right. I am so grateful for all that I have. I am ready for Spring and to see what it brings us - to see what comes next. And so it turns and turns again...

Dealing with an Ice Storm

2010-02-01T12:57:00.005-06:00

Didn't mean to bail on everyone but we got this crazy ice storm on Thursday and then it dropped several inches of snow on top of that on Friday. Our power went on Thursday evening and stay off until Sunday afternoon. When the power finally came back on it took until around 9pm last night to get the house warmed up to 68 degrees. My dishsoap was frozen. Most of the contents of the refrigerator had to be thrown out and the household is just 'out of sorts'. It all around pretty much sucked.

Here are some pictures:

Our home and driveway - the limbs of the tree to the right do not normally slope downwards

This limb had fallen against the back of our house - thankfully it finally fell to the ground without putting out any windows

Several piles of limbs we stacked up

This limb landed on the roof of our bathroom

The next 2 photos are from outside my son's school

Oak trees are not supposed to look like this

A stand of trees by his school

It's been a crazy few days. I'm taking today and probably tomorrow to try and get my house in order and then I'll get back to posting. Hope everyone out there is staying warm.

And be grateful every single day for your electricity.

Wordless Wednesday - the Squatters

2010-01-27T09:38:00.006-06:00

Here they are - the little squatters in my brain.

This is the largest of the 3 and located in my right frontal lobe. These images are like looking in a mirror - it is located on the right side of my brain but in these images it will look to be on the left. The tumor is the large white spot.

This one is the small white spot located right behind my nose - inside my brain - in the Crista Galli. It is the smallest of the 3.

This is the one located on my right optic nerve. Again, these images are reversed so looking at it - the tumor appears on the left side behind my eye. If you notice - the one on the left - the nerve is "lit up" and white - on the right side it is not - the "lit up" part is the tumor. It has wrapped itself around my optic nerve and as it grows is squeezing the nerve and causing me to loose my sight in that eye.

I know it is "wordless Wednesday" but you can't really post images of tumors without some explanation. Thought it might help to have images in mind in which to direct the healing.

What IF

2010-01-25T11:14:00.009-06:00

My next MRI is scheduled for February 24th in Dallas. I will see my NS two hours after the MRI and I'll be bringing the films with me when I see him so we will know what they show right away.

So I did what I said I was going to do - I called my doctor and set it all up. Small steps right? I know I need to do this but it scares the hell out of me. The appointment date looms on the calendar at me. At least when I don't have anything set up I can forget about it some days. But when it's scheduled our lives tend to revolve around that date until it arrives.

I was thinking today about belief: in things, in prayer, and in absolutes. I picked Alec up from school and told him about the MRI and up-coming appointment. He was concerned and worried and said, "What if it's worse?" I said, "then we'll deal with it." And then I said, "What if it's better?" He just looked at me and said, "Do you think it could get better?" And I said, Yes.

And I DO believe that. More than that I even believe that it could go away. How's that for crazy? But it's true. Up until now when I thought about my best possible outcome I had always thought of the tumors just halting their growth pattern and rate; that they would just freeze in place. Today I had the insane idea that they might just start to retreat - grow in reverse - simply go away.

Now, I know how this sounds. Denial is not just a river in Egypt - ya, I got that.

But what IF. What IF?

I am frankly tired of living in the world of absolutes. I didn't used to live in that world - when I was little I was absolutely convinced of what if. What if means possibility; what if means HOPE.

I believe in prayer. Prayer of all kinds. Prayer, by its very nature, is in the business of what if. I truly believe that if you pray the Divine will listen. Doesn't mean you'll always get what you ask for but I believe that you are heard. I fall asleep damn near every night praying. Now - that is not too say that it is a boring process to me - far from it. It is more that it relaxes me to the point that I actually fall asleep. It makes me happy to know my last thought, conscious or unconscious, was with God.

I also believe in the power of our mind. I believe that through what we think we help create the world around us daily. The subconscious is the most open to suggestion in that "tween" time between waking and sleeping. So what better time to talk to myself and my God about curing the tumors than right as I'm falling asleep? Why should I just lay down and give in to the brain squatters? Why not fight the dark images with Hope? What if I believe I can be cured and really bring it about?

When I spoke with the doctor's office this morning they originally scheduled all this for February 3rd. It was after that conversation that I had this Hope Epiphany and decided that the tumors were going to go away. The doctors office called me back an hour ago to say they were sorry but they had to bump me back to February 24th. What IF that happened to allow my body more time to heal itself? May sound crazy but I think it sounds good. It gives me something positive to look forward too - something positive to FOCUS on.

So this is my shameless plea for prayers. I'll take any and all comers. Prayer of any kind is fine - I'm not picky. It works; I am convinced of it. We have until February 24th. What IF we manifest a miracle folks? Let's see if we can.

Not so good

2010-01-24T11:44:00.004-06:00

My head hurts today. I took some Advil earlier but it isn't doing much good. I think I need something stronger but I don't have anything stronger. I'm hoping it is just a headache but...

This is where the fear makes its entrance. I'm trying to avoid that road but given the 3 squatters in my brain the fear is actually justified.

My Pollyanna side keeps telling me I have a headache from the wine last night. But I only had 1 glass. And that was with dinner. Not sure it could actually cause a headache today.

Also, my right eye is giving me a lot of problems these days. It has been watery and red and achy since last week. Again, trying to not go down the fear path. But again, knowing that one of those damn squatters has wrapped itself around my right optic nerve isn't doing me any favors either.

So this is all the posting I'm doing today. I'm going to do some laundry and lay down quite a bit. Try resting my mind and my eye.

I'm calling my NS tomorrow. I have to set up my next MRI and appointment to talk over what is happening up there in my head.

I am afraid. But I'm still going to make the phone call.

Updates

2010-01-22T12:18:00.018-06:00

Converting our informal dining room into a playroom was the best idea I've had in a long time. The kids LOVE it and Max plays in there all the time now. With Piper. Without attempting to injure her.

This is a Very Good Thing.

I promised pictures and I will tell you all right now that I suck at actually uploading the things and saving them and all that so sometimes it takes me awhile to get around to it.

BUT I did manage to upload some the other day so here is a glimpse at what we did in there.

I have more to do but it's a start.

Pip cut her second bottom tooth last night. That is also a Very Good Thing as it was causing her a considerable amount of pain. She is also getting up on her hands and knees every chance she gets and managing to move forwards at times. I feel pretty confident that she will be crawling by Feb. 1st.

Alec brought his report card home and he has an A in Literature. His actual number grade in that class was a 99. A 99 people. 1 point from perfect. I could throw a party. Reading has always been the hardest thing about school for him and he has a flippin 99 in Literature. Rock the hell on Ack. You are my hero. But then, you always were anyway.

I took Max to MDO yesterday and then Pip and I went to Target. I was going to get a charging station to keep in our kitchen to hold all of our cell phones and charges and whatnot. I have been meaning to get one since before Christmas but I just never got up there to actually purchase one before the holidays. Anyway I saw it last week on clearance for $20 - marked down from $50 - and I thought - if it's here when I come back next week I'll buy it. So we went up there and I found them and it had been marked down again. It was $7.49. Oh my sweet lord! That was the thrill of my day! Woot! It's the little things sometimes that get you through - you know?

I came home and finally got in touch with the lady who will be doing Acupuncture on me. We had been playing telephone tag for 2 weeks now. She sounds awesome. She's been doing this for 17 years and got into Acupuncture after her best friend got Bell's Palsy. She was pretty knowledgable, very understanding, and hopeful. She said we will give it a good try and that she was going to be working on trying to unblock the neurological pathways in my face. I hope she can. I feel positive about this. Maybe I'll still get my face back yet.

Wordless Wednesday

2010-01-20T11:36:00.007-06:00

Max

Just cause it made me smile .

My Soft Place to Land

2010-01-17T10:18:00.002-06:00

I got on Facebook today and saw a bijillion and one postings from women about their husbands and how you are supposed to cut and paste it in your update and yada yada ya.

It was a nice sentiment and it got me thinking about my husband.

To say that he is a Good Man just does not cover it.

He is a very Good Man. He works hard every day at his job for too little praise and way too little money. He averages 10 hrs a day at work and another couple when he comes home. Today is Sunday and he is at work again and he will probably be gone at least another eight hours. I miss him.

He is my rock, my safe place, and my shelter against the storm. He is rather quiet compared to me. He listens before he speaks and usually keeps his opinions and thoughts to himself unless expressly asked (haha - I know very unlike me.) I am learning from him.

He is solid. He is unafraid. He is mine. And I know how lucky I am to get to experience this life with him.

Now, this is not to say he is perfect. No one is perfect. He has his quirks and mannerism that bug the ever-lovin shit out of me. But those pale in comparison to his Good. His Good is legion.

He takes care of us; he takes care of me. We know each other at a level I don't think I've experienced with another human that didn't come out of my body.I joke with him that we have some sort of psychic connection but in truth, I swear we do. He always seems to call me exactly when I need to hear his voice. I can be angry at him over something or be sitting here distraught over one or all of the medical stuff with me and he will call at precisely that moment because "he felt like he needed to." It happens all the time and has since we met 7 1/2 years ago.

We met through Matchmaker.com. (I know - shut up.) I had been on that service about 3 weeks when I got an email from him. He said to me that he could say a lot of BS to me about my profile and all that but the truth was he thought I was hot. (lmao) Then he went on to tell me he had just moved to Dallas from Denver and didn't really know anyone yet. Anyway his email to me was so different than most that I got, it was honest, it made me laugh AND he had just moved to town from Denver. All of those things caught me and I hit reply - responded to him that I used to live in Denver and that his email was funny and hit SEND. I hadn't even looked at his profile. He could have been 400 pounds and green for all I knew. I didn't care. I clicked his profile page and I saw his picture. My first thought was 'he has a great smile.' And he does. We talked on the phone for about 3 weeks before we actually met in person. When we did meet it was at a Chili's in Plano, TX and we ate boneless buffalo wings and drank beer. At the bar. We talked for 3 hours. That was a Tuesday. We had another date on Thursday and on Saturday - which happened to be my 30th birthday. I knew by Sunday that I was falling in love with him. Within the month I knew that if he asked me, I would marry him. True story.

We have definitely had our rocky patches but we have come through them. When all of this happened to me this past summer, he never wavered. I've never even seen him look at me differently. He says it has never made any difference to him - how I look now - and I believe him. I am humbled by him and his capacity for love. He does not give himself enough credit on that score. I am not even sure I really understood what it was to love another adult truly until now and until him. I have learned this through his example and through his loving me.

He is my best friend. I have more fun watching football or going through March Madness with him than I do with anyone else. There are so many things about me that he just "gets" like no one else. And the things he doesn't "get" aren't that important anyway.

Mark is not the most vocal person - he doesn't spill his emotional self all over the place. (Again - unlike me - I know.) He keeps most of it inside. But when I need him - he is there: strong, unflinching, and solid. He doesn't try to carry me through this (although he would if need be - but we aren't there yet) instead he walks beside me. He allows me my time and lets me cry, holds me, and hands me tissues. He tells me WE will get through this and says he believes in my strength. Instead of co-dependently trying to fix it for me - he loves me and supports me but allows me to find my own way.

I don't know how I ever got this lucky. I also do not know what I would do without him.

I love you babycakes.

Thank you for your strength and your patience. Thank you for giving me these beautiful kids. Thank you for being a wonderful husband and a great dad - to all 3 of them.

I am so glad you are mine.

Thank you for choosing me.

short one today

2010-01-16T15:43:00.001-06:00

I'm going to start a second blog - one for all my mommy "stuff".

This blog is reserved for Kathleen stuff - with some snippets here and there having to do with the small people - but mostly it's mine.

My plan is to work on that this weekend and when I get it up and running I'll post a link in case anyone wants to take a gander over there from time to time.

This really should be in the Mommy Blog but since it's not up and going yet I'm putting it here -
I'm converting our informal dining room into a temporary play room for the kiddos. While we are working on the attic and basement and converting them into more living space (bedrooms, bathroom, REAL playroom) the short people NEED somewhere for their crap to be. And believe me - they have a LOT of crap. SO since we have 2 dining rooms (yes, I know - its an old house and evidently this is how they lived - I don't know - one is a real true FORMAL dining room and the other, off the other side of the kitchen, is for a kitchen table - informal right?) I figure I'll turn one of them into a space for the kids and most of their stuff aka crap. Since the true formal one has built-ins with lead glass and all that snazzy stuff - it needs to be the informal one. (GOD I feel really pretentious and stuff saying that.) Anyway - that is what I'm doing today.

This serves a few of purposes:
1. It gives us a place to put all their toys. Hopefully this will mean I can keep the toys from creeping all over the rest of the house. It may be a pipe dream but it's one I'm holding onto for now.
2. Piper needs a place where she can s p r e a d out and practice this crawling thing. I have 2 rugs down in there and hopefully she'll be able to roll around and practice getting up on her knees. We have hardwood everywhere - pretty yes but not too good for traction when you're learning to crawl.
3. My doing this is bugging the ever-loving shit out of my husband. I'm hoping that by doing this it will add more motivation to him to get the other bedrooms FINISHED so that all the toys can go live in each kids room and we can put our kitchen table back where it needs to be. *evil grin*

Pictures to follow.

time to change my filter

2010-01-13T11:06:00.001-06:00

I noticed last night when my husband came home he had stopped by Lowe's and bought a new filter for our furnace. He changed the old one out and it was full of all sorts of nasty bits and wads of who-knows-what-sorts of sludge. I remember thinking I was surprised if anything good was able to get through all of that. It was a Good Thing that he changed the filter now before it was too clogged to function at all.

Which got me thinking about my own personal filter.

I need to change it. It *is* clogged with much too much sludge and negativity and in general Bad Things. It is tiresome trying to filter my life through all that crap.

So I'm removing that one and putting in a new one. I'm not even sure that is entirely possible but I'm going to try. I have always believed that we are a sum of our parts - parts being our experiences. And what is all that clogging up my filter but my own life experiences? Hell - what IS a filter if not a sieve of our life experiences that slants the way we see and perceive the world?

Mine pretty much filters out LIGHT and lets in only the gray. Not good. I am fed up with seeing the world in that way: through the dark half - light.

It is interesting to me that this epiphany occurs now when the sight in one of my eyes is fading to black and I see mostly gray through it. Ironic much? Maybe that is part of this lesson. I mean, after all, how many Greek tragedies have you read where the BLIND man is the Seer? Damn near every one. God has a sense of humor - clearly. I digress.

Back to me and how I got here. I believe that when you hear the Bad Things often enough and loud enough and from the people who are supposed to love you as a child you take them in to your filter to be Truth. Even if they are not.

So now I'm attempting to replace what has been my filter all of my life: the belief that I deserve the Bad Things, the belief that I brought the Bad Things on myself, the belief that I will only continue to draw the Bad Things to me.

To all that I say a loud FUCK OFF.

I'm tired of being Sorry. I'm tired of being co-fucking-dependent. I'm tired of the Bad Things ruling my thought process.

My father stopped speaking to me 2 years ago this month. I have no idea why. He won't answer his phone when I call, or return my phone messages or emails. He won't tell me why - although he makes it clear it is OBVIOUSLY my fault. Well, fuck that too. Here's what. If I do something to you to upset you - then tell me. I am not a mind reader. I am not doing whatever it is on purpose. I don't know that I'm doing it - otherwise I would stop.

So fine. I have cried and wept and grieved over this. And I have done so because I felt like I deserved this. That I brought this on myself. That I deserved no better. That was my filter he gave me as a child. I still have it and he knows how to access it. No more. I'm done. I DIDN'T DESERVE THAT then and I don't deserve it now.

I'm also tired of the passive aggressive bullshit. I have enough of the Bad Things in my life; I don't need to invite in more. So as of now that is gone too. I'm cleaving it out with the paring knife I was given for Christmas. It's hella sharp.

I'm not stupid. I'm sure that some left over nodules of sewage will rise to the top now and then and attempt to clog up my filter. But this time is different. I will slice it out before it gets too much of a foothold. It can not live here anymore. I have flogged myself enough throughout my life. I am done. Time served.

I have a great many Very Good Things in my life: too many to name. And because of that and a zillion other reasons, I need to let the light in; I need a clean filter. I deserve to be happy, and loved, and healed, and whole. THAT is my new filter. If you don't bring one of those 4 things into my life then you are going to be filtered and removed. I have my paring knife; and I'm not afraid to use it.

MIA

2010-01-12T08:51:00.001-06:00

Sorry folks but there are many things going on with the short people in this house right now (teething, sleeping issues, sibling jealousy,and at least 1 sick child) and I just don't have the time to pen my thoughts. Will try to get one finished by tonight.

These are the days

2010-01-08T10:26:00.001-06:00

that I most likely will not remember. Why - you ask? Because I am utterly sleep deprived.

I remember sleep. The refreshed feeling: the ability to move, to function, to speak coherently. I fondly recall all of it. There is a reason that sleep deprivation is a form of torture. I believe it. And I have no doubt of its effectiveness on the recipient.

Now, couple of things here ; I have brought this on myself. I'm aware. I chose to have kids. This is my own doing. Got it. But still. DAMN ya'll.

For the last several days I have not had more than 1 hour of straight, uninterrupted sleep. ONE hour. I have literally seen each hour during the wee morning times tick off on the clock.

I have a 7 month old baby. And she is going through some sort of developmental leap/growth spurt. This means very bad sleeping for the parental units - or in my case - the mommy. Also - she likes to eat; this, too, because of said development leap/growth spurt.

I also have a 3 yr old son. He has decided he will no longer sleep in his own bed in his own room. He must sleep in our bed in between us. Sideways. Kicking. Often times randomly slapping me in the face as he flails his arms around.

So - not much sleep for mom. Interestingly enough my husband seems to have NO TROUBLE sleeping through any of this. I'll let you all chew on that a bit. I digress.

I need sleep people. Not just so I can properly function and parent these here kiddos - but also because of all these here freaky ailments. One of the MAIN things the Bell's Palsy sites will tell you is that to heal and heal properly (read to NOT have residuals) - you must sleep. Sleep they say - rest they say - as much as possible they say. They talk of rest/sleep for 12 - 14 hrs per day.
*bawahahahahahahahhaahhahahahahahahaahahaaa* *snicker* *snort*
Sorry - please excuse the sleep deprived hysterical laughter.
So...Wait, uh. Where was I? Oh, ya.
Ok. *slaps face*
I need more sleep or at least better quality sleep. I fear this may not occur for some time though. See it's just not real likely to happen when you have kids and virtually IMPOSSIBLE when you just gave birth.

Yesterday was bad. I noticed the first clues to just how bad at 2:30am yesterday morning when I woke up to LET THE DAMN MEOWING CAT OUT and noticed how dizzy I was - just sitting up in the bed. Dizzy: like being too high up and looking down dizzy: room spinning dizzy: omg I may hurl dizzy. It did not get better. I was lightheaded. My head hurt constantly and I was just slow/punchy all day long. (yes, more so than usual - shut up.) I'm actually surprised I was able to string enough words together on my blog to inform you all of my non-writing. AND I had zero patience. ZERO. NOT a good thing when you have a 3 yr old whose very existence is one that is hell bent on testing said patience.

I need to have patience and understanding with my children but when I am *this* tired - I honestly can't. I feel like I do not know how to even relate to them. Then I read this* :

The link between sleep deprivation and psychosis (psychiatric disorders) was further documented in 2007 through a study at Harvard Medical School and the University of California at Berkeley. The study revealed, using MRI scans, that lack of sleep causes the brain to become incapable of putting an emotional event into the proper perspective and incapable of making a controlled, suitable response to the event.

So it wasn't just in my head. I feel validated and depressed all at the same time.

It was a bad day.

So I got a wee bit of sleep last night. I slept two different times last night for 2 hour stretches each. The rest of the time I was up about every hour. But it was a little better and I feel slightly more human today. I can function a bit. I'm not standing in the center of the room screaming today.

I am aware this is not a riveting blog post but it's all I'm capable of right now. Write what you know. Well, what I know intimately right now is sleep deprivation. This too shall pass. And it will most likely pass in a sleepy, foggy haze.

I'm out for today. Off to try and sleep while the short people nap.

*The quoted material is from Wikipedia's page on Sleep Deprivation.

No Post Today Folks

2010-01-07T14:24:00.000-06:00

I am not feeling very good today so I'm laying low.

See ya'll on the flip side.

bravery

2010-01-06T10:34:00.001-06:00

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. - Eleanor Roosevelt

When I was 8 years old I won several regional piano competitions and earned myself a trip to the State competition and recital at OBU in Shawnee, Oklahoma. This was a really big deal for an 8 year old. The two hour trip up to Shawnee that morning in our Conversion Van (ya, I know - shut up) with my Mom, Step-Dad and Grandparents went by in a stomach - knotted haze.

I remember getting through the first part of the competition - the written test, and then the second part - playing my song in front of a room full of judges - with relative ease. Then came the scary part; I was to play my song in the main music hall in front of approximately 400 people, on a real life, full length, black GRAND PIANO.

I was completely enthralled at getting to play on one. It was huge and it looked like something out of a movie. I remember gazing at it from the side of the stage and thinking two things: 1. it was the biggest, most beautiful piano I had ever seen in my life, and 2. that I was scared to DEATH. I remember waiting there for the man to call my name - ticking off the seconds but feeling them as hours.

When it was my turn, and he finally announced me, he announced my last name wrong. Something clicked inside of me and I wasn't afraid anymore - I was irritated. Back straight, head held high, I walked onto the large stage straight up to the announcer, tugged his jacket sleeve, and corrected him. Then, I walked back OFFSTAGE. I waited on him to announce me again, this time saying my name correctly; and he did. The audience chuckled but I remember thinking, 'this is my moment to be up here - I want to hear you pronounce my name right'. Then I sat myself down at the biggest, most beautiful, black grand piano I had ever seen and I played.

I want to be that little girl again: unafraid to walk the path in front of her and absolutely sure of herSelf.

I wonder where it went - my courage. How did I go from being THAT person to the person I have become? Where did my courage go? Where did my FAITH in mySelf go? How did I go from KNOWING that I could do something, and do it well - mind you, to KNOWING that I could do nothing well? Is it a girl thing? Is it person thing? Is it a child of dysfunction thing?

I don't know.

What I do know is that I need that courage back; that unfailing sense of Self and sureness and willingness to walk forward. I know that the road in front of me is going to be difficult. I know that I am going to be terrified a good many times. So many of the medical procedures facing me are nearly as bad for me as the damn disease said procedure is treating. Seriously. Undertaking these things - these "treatments" will be a test of my will, my character, and my ability to endure.

So here I sit. I am waiting to hear when my next MRI is going to be and it occurs to me that writing this blog - that THIS, all of this, takes a good deal of courage too. To do it - to put it out there - to tackle the "white demon" that is the empty page; takes courage. So maybe this writing out loud is my dosage - small drops of courage on my tongue to get me ready to do the big things: to pick up the phone and schedule those appointments, to face the images on the MRI films, to read the doctor's reports.

Courage in small doses then - when things are bad and my joy is full of gray. Small doses and small steps down the path. Here's hoping.

We could never learn to be brave and patient if there were only joy in the world. - Helen Keller

my house is a wreck

2010-01-05T14:28:00.002-06:00

I love my house. I love being a stay at home mom. I love that this is my life. But my house is a wreck.

We currently live in a Craftsman style bungalow that was built in 1918. When we bought it, it had 1900 sq ft, 3 bedrooms and 1 bathroom. When we moved in - it was the two of us and our 7 year old son. Now, five years later, we have 3 children and us - see the problem? We are currently a bedroom short. The boys each have a bedroom and we have the little princess in our bedroom. Her - along with her crib, changing table and dresser and OUR bed, dresser, chest of drawers and other assorted crap - and I'm beginning to feel claustrophobic. To say there is a need for 4 bedrooms is a giant understatement. She is almost mobile and her toys are beginning to take over the house simply because we have nowhere to put them. Also - I flat out want to have our bedroom back; just me and my husband; a kid-free zone.

That means either move or add on.

Because we are Masochists, we have chosen to add on. We are not new to the addition process. Our home now has 3 bedrooms and 2 bathrooms thanks to our last big renovation undertaking. So here we are again; there are but two options.

Option 1:
We have an attic space that runs the length and width of the home but with steep sides from the pitch of the roof. There is only room to stand straight up in the very middle of the attic. We could add on up there - another bedroom and bathroom - possibly an office. This idea will add another 400 sq ft to our home. But it will also add a new roof line, dormers, re-run HVAC, and plumbing. And how cool would it be to be a teenager with your own room and bathroom upstairs and away from the small people?!?!

Option 2:
Our home also has a basement that runs the length of the home - a real rarity in Oklahoma. The basement is not finished and it is not water tight: the water seeps in from the floor when we get a lot of rain. We could finish it and add *almost* another 1000 sq ft to the home - I think it would add 890 square feet to be more precise. We could put, in theory, 2 bedrooms, a play room for the kids/craft room for me, laundry room AND storage room down there. BUT we would also have to do a french drain around the perimeter of the existing basement floor. And dig out the windows, and seal the floor and walls, and add HVAC and probably a wood stove.

I want to do the basement.

My husband wants to do the attic.

This past week he tore out part of my mudroom (that we just finished in October)
and put in 3 stringers for a staircase leading up to the attic. The stairs will be nice when they are finished - I'll give him that. He maintains that this is to make it easier to store everything up in the attic while we are doing the basement. I think it was really his weaselly way of beginning his project..."well, the stairs are already in baby"....uh-huh...

So anyway - my house is wreck. Not just the typical wreckage from Christmas and the holidays. But now from the next huge renovation project as well. I can't believe we all don't have asthma there is so much dust.

Not much of a post today because I am going to attempt to clean this place. I can't even focus on organizing it yet - I just need to get the layer of sheet rock dribble and sawdust OFF of everything.

I'll try and get back to more interesting posts tomorrow.

Pruning

2010-01-04T09:04:00.001-06:00

Throughout my life I have given thought to trees. I rather enjoy trees. I have a soft spot in my heart for the Oak. It is useful. It provides shade, provides us with a show throughout the year as she changes her colors, and, if need be, provides us with a good, solid wood with which to build on and walk. What a grand, magnificent tree the Oak.

I also have loved the Weeping Willow. Its graceful arches and soft listing branches swaying in the wind; a sad tree if ever there was one. It did not go unnoticed by me when I found our little dream house - that it lived on Willow Street. It was a further sign to me that this was our house - but I digress. I fancy myself stuck between these two trees. Often finding myself being the Willow - sad but still standing; but always hoping I would end up as the Oak - deep roots, strong sheltering branches and always standing tall. But now, I don't feel much like either. I feel more like the little Bonsai tree.

Timeline

June 5 - daughter was born - spent next week in NICU
June 12 - woke up with Bell's Palsy on right side of face
June 15 - started round of steriods - no visible improvement
July 1 - had first MRI - am told they found 1 Meningioma
July 13 - had second MRI - am told they found a second Meningioma and that I have Optic Neuritis affecting my right Optic Nerve - I may have MS
- took a break from doctors for the rest of the summer -
September 30 - met with brilliant NeuroSurgeon in Dallas - he reviews my MRI films
October 5 - have 3rd MRI
October 23 - get letter and report from NS in Dallas regarding 3rd MRI - his findings are that I do NOT have Optic Neuritis OR MS but I do have a THIRD Meningioma on my right Optic Nerve. He does NOT recommend radiation therapy, yet.
November 10 - met with a Neuro-Opthamologist in OKC. He examines me, examines all the MRI films - says he agrees with NS - 3rd Meningioma, no MS, tells me I will go blind in my right eye - recommends radiation therapy and refers me to another Neuro-Opthamologist. Also recommends Lumbar Puncture.
November 11 - present - break from docs again.

It has all been too much too fast.

During all of this people have tried to make me feel better about what is happening to me. I get a lot of, "You are being shaped by these experiences." "God is molding you - shaping you into your best expression of Him." "Through you, people will see God."
Ya?
Really?

I don't want anymore shaping; no more PRUNING. Pardon me, but I want to keep what branches I have. I feel as though I'm being hacked at, pruned with left out in the rain too long, rusty, old hedge clippers.

*snip*

The branches of my tree - the branches of the possibility of my life - my future - pruned by diagnosis after diagnosis: Meningioma, *snip* Bell's Palsy, *snip*. Pruned by medical procedure after medical procedure: MRI, *snip*, Lumbar Puncture, *snip*, Radiation, *snip*. Pruned by the medical certainty of my outcome: Blind in right eye *snip*, BP residuals - Synkinesis *snip*, Cranial Surgery, *snip*.

I feel like a bloody stump of what I once was: of what I hoped to be, of what I COULD be.
*snip...snip...snip*

So now I have to find a way to acclimate myself to this new sense of reality, of future, of possibility. Or maybe I need to find a way to just live in the now. Limit my hope to tomorrow or the end of next week rather than twenty years from now. Maybe both.

I am learning how to be the Bonsai tree.
Perhaps I am being shaped with a purpose. Perhaps it only looks as though I'm being hacked at because I'm still in the "middle" of the work. After all, Bonsai is considered an art form in Japan. And maybe there is a hope of a long future as a Bonsai tree. The oldest known living Bonsai tree is over 500 years old and is considered a national treasure in Japan: 500 years of something pruned and, in its own way, beautiful: 500 years of inspiration given to a people and a culture.

Maybe being a Bonsai tree is not so bad after all. Part of the art of Bonsai is patience. I know that patience is a big part of my lesson in all of this. So this is me then - the little Bonsai tree. Pruned, bruised and battered, but still growing - still trying to BE something. I am learning. And I am trying: with love, with hope, and with patience.

A Writer writes

2010-01-03T11:33:00.000-06:00

I love me some Marge Piercy. She is my favorite poet and I'll be quoting her from time to time in here. She has a way of putting things. It fits. This from her poem
"For the Young Who Want To"

The real writer is one
who really writes. Talent
is an invention like phlogiston
after the fact of fire.
Work is its own cure. You have to
like it better than being loved.

I tend to loose myself in my wife/mom duties - they are for the others in my life and not for mySelf and, selfish as it sounds, I need something for mySelf again. I want to have a purpose outside of family. I'm not saying there is anything wrong with your only purpose being family - it is a good purpose - a noble one; I'm talking about me here and what I need as a person. It's not so much that I want to feel that I matter in this world, but more that I want to contribute. I want, no I need to feel that something I do, something I can produce, means something out there. I want to know that my thoughts exist somewhere outside of myself too.

So I am writing again. I have left it from time to time but to it I have always returned. It has been the one constant in my life. I have always written; for newspapers, yearbooks, professors, and in journals for myself. I have journals of poetry going back to seventh grade. Before that I poured my soul into music. I played the piano, the violin, and the cello. Somewhere around puberty I decided that I was no longer capable; that I couldn't do anything right; that I had no talent. So I stopped playing and started writing.

For me, writing was deeply personal. And it was private. It was MINE. No one saw it but me and so I didn't have to suffer through others' opinions of it. There was no recital, no judges, no teacher's metronome ticking off the beats which I was expected to hit. It was just me and my paper and my thoughts. It was a gift. It was my safe place. Because of this I was terrified every.single.time I turned in a newspaper column or a paper to a professor. Writing was like laying a piece of my soul bare - something akin to the dream where you are in public and naked and everyone is staring and pointing and laughing? Yep. Exactly the same feeling for me. But I wrote anyway.

Obviously all the medical craziness in my life has me thinking about why it's all happening; why I was chosen. And I'm thinking that maybe this mountain of crap I'm being forced to climb is for a reason. Maybe that reason is for me to use. A very painful Muse to inspire me to write. Maybe something I'm going through - if I write it down - will help someone else on their journey. Or maybe I'm reaching. I don't know. I just know I need to write. Write about all of it: the good, the bad, and the real damn ugly.

So all that to say this; here I am. Writing out loud. This is scary as hell ya'll. Putting it out there. Letting the world (or even a scattering few people whom I love and trust) see this. But it's scary all the same. Judgment, ridicule, ugly anonymous comments; those are the what-ifs. I am not going to let the what-if's stop me. As Chuck Wendig challenged his fellow writers to do; I am throwing my pebble.

Let's see how many waves I can make.

So...ya

2009-12-31T10:32:00.000-06:00

I decided I needed to do this. For me. Lord knows I have a lot to say and no one to say it too. One can only talk to themselves so much before yourSelf even looks at you and says..dude, really, even *I* need a break. Also I've been thinking up different things I would say in my "blog"...to the world, to myself. SO - here I am. Maybe it's the New Year thing or maybe I just decided it was time. Most likely both.

A bit about me.

I'm 37. I'm relatively healthy. I don't take any sort of meds at all - maybe the occasional Tylenol or Advil for a headache but it has to be a pretty bad headache...and I don't get headaches very often so there you go. I have 3 beautiful children who are the joy of my life and occasionally the reason I have to have a drink. I have 2 boys and a girl.

After my daughter was born this past June, one week after actually, I woke up to find the right side of my face didn't seem to work right - specifically my mouth and cheek, and then later my eye and forehead. I woke up with Bell's Palsy. No one knows why. It just happens to some of us real lucky people. Anyway, I saw my OB and he put me on Steriods and told me it would be gone in about 3 weeks. I have had this condition now for just over 6 months. I have regained some of the muscle movement in my right cheek and I can smile again (and omg how WONDERFUL it is to be able to smile - you'll never know - NEVER take it for granted). However, it's like some of the nerves never fully re-connected. I can't move my bottom lip on the right side or the top lip on the right side. The right nostril still doesn't move. My right eye still will not close fully at the corner. I can not raise my right eyebrow and part of the right side of my forehead still won't move. Also the cheek muscles that have come back have now become hypertonic and pull continuously upwards. It is worse when I attempt to close the right eye - it becomes a sneer.

It is truly like a living nightmare.

I look normal in my dreams - when I sleep. Lots of nights I dream that I'm with my husband at dinner or a bar or a club and I always look like I used too. And I'm happy. And free. And normal looking. And then I wake up and walk by a mirror and remember.

I had someone on another board post to me, about this condition, that it was "just a little facial paralysis - not that big of a deal". Well, it's not a big deal when you have a normal looking face and you don't have to tape your eye closed and your mouth doesn't pull into a sneer and you can eat and drink without it FALLING OUT THE SIDE OF YOUR MOUTH. Just a "little facial paralysis" my ass.

This is what Col. (Dr.) Alan Holck and Maj. (Dr.) Manuel Lopez have to say about Bell's Palsy...
"Loss of the facial nerve can be devastating and life-changing. The nerve provides motor movement to the face (overall facial animation). It allows you to smile, chew, close your eyes and raise your eyebrows," Dr. Lopez said.

"From the top of the face down, the problem usually starts at the brow which causes problems closing the eye," Dr. Holck said. "Subsequent drying of the eye can result in infections and loss of vision. The midface droops. The corner of the mouth also descends and, therefore, drinking becomes a problem. Patients will drool and have difficulty eating. Food tends to get lodged in their mouths. You become almost a social leper because you don't want to go out and keep having to get up to go wipe your mouth. And among other issues, the tip of the nose deviates and so it is really a problem. It is most importantly a functional issue but also has a devastating cosmetic component."

A social leper. It is a very good description, and unfortunately, dead on accurate.

Most of my friends IRL have split. I think it's hard for them to look at me. But, more than that, I represent what can happen. The minority, the slim chance, the statistical whamo. And no one wants to have to see that because then it's reality and you may have to consider it could happen to you. Also, I don't think anyone knows what to say about it or not to say about it. Do we talk about it or do we ignore it? What would be better? It stresses people out so they just avoid the situation - like we humans are prone to do. Ignore it and it will go away. Except that also means ignoring me, the person, too.

And it's funny to me how much I notice people's faces now. I notice symmetry. I notice asymmetry. As if I'm trying to find a comrade - someone who knows this. I'm trying to find others so I don't feel so alone. I also detest fashion magazines now. I used to LOVE makeup. LURVE it. I could DO some makeup and I loved playing with it. I don't even bother most days. I mean why play up your features when that will only bring attention to how wonky they are now??? It sucks ass.

BUT. I'm trying to not loose hope. Some days I'm admittedly in the floor. Other days, like today, I'm trying to remain hopeful. Loss of hope is debilitating. I'm trying to hang on to some. I'm going to go see an Acupuncturist next week. And I thought maybe I'd look into hypnotism. I mean if my brain BELIEVES the nerves will continue to heal - they'll heal - right?

I want my face back. I want MY face back. I want to be pretty for my husband again. I want to be able to kiss him again and have my lips work. I want to eat again without loosing food out of the side of my mouth. I want to take a drink of something again and have it not end up on my shirt. I don't want to feel humiliation every time I try and eat or drink in front of someone. I want to be able to close both of my eyes. I want to be able to close both my eyes when I kiss my husband.

Yes, this is a downer sort of post. It's my blog - I'm allowed. I'll get to the Meningiomas later. (the BP sent me to a Neurologist who sent me for an MRI, and then another, turns out I have 3 Meningiomas, benign brain tumors with one being on my right optic nerve which they tell me will cause me to eventually go blind in that eye, as well as the BP and none of them are related to the other. I know, I'm a freaking barrel of monkeys over here. Or a lightening rod for odd conditions. Again - most likely both.)

I'll get to my positives and the things I've pulled from this experience. But today I needed to get this out. And move on from here. I'm not saying I'll never have a downer post or an angry post because I'm sure I will...but there will be some more positive ones to follow. There are days you just need to hate the world. And I do. But I am finding that more days than not, now, I am finding joy and light and attempting to leave the darkness behind me. It's hard. Every time I see an old picture of me I feel a tightness in my chest and a sadness. I have not accepted my face yet. I don't know if I ever will. But each day is another chance to attempt it and try and move forward. It's all I can do.