The Road to acceptance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Max

Happy Wednesday!!!

Today it is just too much

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

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

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

 

Alec

so very grown up now...

Happy Wednesday everyone!

A Picture is Worth a Thousand Words

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

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

I

love

them




Happy Wednesday!

Do you feel it?

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

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.