Antlers

I don't hate my job. I find no shame in working a low-level, practically minimum wage job. It gets me out of the house, it forces me to interact with people. And let's face it, without being forced to, I won't. This year I have brought home close to five figures, and I have insured my family. No shame in any of that.

Until today. Today, my boss handed me a pair of reindeer antlers as I walked in the door. The antlers were only a slight step down from the Santa hat I had already been wearing by my own choice, but one antler was broken. This, to me, seemed just too low. I was not thinking about making money or insuring my family, or the fact that I don't hate my job. I was thinking about the floppy antler and how this is not where I pictured myself at 42. I put a band-aid on it, because humor soothes the shame, but tomorrow I go back to the not-so-lame Santa hat.

I am now at home (with nothing upon my head) sitting in what I have dubbed "The Christmas Room". The basement/family room which has in recent years been a catch all for toys and books, ugly furniture and fitness equipment (which, pfft we use a LOT!! ahem), and a place to send the kids who are not our favorite people right now to watch tv and get out of our hair. This year, I have transformed it into a cozy, Christmas-y happy place. Warm and inviting. I have finally taken some odds and ends off of the the walls that were hung by my in-laws, and re-covered them with our family photos. I have talked before about the difficulty I have had in making this home my own, because it was my husband's family's home and there are parts of them everywhere. (not literally!)  It has been a very slow, ongoing process to make this home "mine" but the room I am sitting in right now is decidedly Shawnee and I like it here.

I am missing too many people this year! I expect the years following the death of a loved one to get easier somehow. And it does, I suppose. Different, at least. But you never know when grief will sneak up on you. While I was driving yesterday I saw a funeral procession for a firefighter, complete with the town's entire fleet of trucks. I found myself sobbing in the car. I have no connection to firefighters nor has anyone I am missing. I guess it was what the grief just under the surface needed to break out; someone else's grief. And of course, the holidays.

And maybe the broken antlers...

But right now, I smile.

Long time gone.

Um, hello.

Clearly, I am a fair weather blogger. A "blog when I feel like it" blogger. If I have something I need to say, I say it. If I don't...

Since I don't have legions of followers and I am not making a living off of my blog, this is not an issue for me, and probably not for anyone else, either.

Quick catch up- School has started, as have nightly battles with my ADHD child over homework. So far, this year seems to be a bit easier for her than last, but then again we are just getting started. Baby steps. Football season has also started, we go to practice three times a week and one game a week. And we are still waiting on the boy's first win, ever. They didn't win a single game last year, and are 0-2 this year. Winning is not everything, but it is something and I am anxiously awaiting the moment my dedicated son tastes sweet victory. And the little man will soon be switching schools to enter a program for braniac Autistic kids, to work on his stimming behaviors, which are disruptive both to him and other kids. I have been walking my kids to the school on our block for years, so putting the wee one on a bus will be hard for me, but he is definitely up for it! And my oldest baby? Well, he just had another baby! I flew to Arizona to be with him, my daughter-in-law and granddaughter for the birth. Another beautiful baby girl. I fell so in love and my arms are aching to hold them all now. My husband and I have had a sort of renewal in our marriage. Nothing was outwardly, obviously wrong, but the last several years had worn us down and somewhat away from each other in ways we didn't realize. Let's just say that a little communication goes a long way. And a lot of communication and prayer? Well that can move mountains. We are in love like we were 16 years ago when we married. I actually get butterflies when I see him.

So with things going so well on the homefront, if you know me you may wonder about my health. There has been some big news on that front. Maybe. I recently saw another doctor for a second opinion about Primary Sclerosing Cholangitis, mostly because since diagnosis I have not had a single symptom or indicator of having the disease that could not also be related to something else. That and the fact that my liver doctor os not actually a hepatologist, but a gastroenterologist who has a sub-specialty in hepatology. So this second opinion is actually something I have been meaning to do for a while now. I traveled to VCU in Richmond and met with him, where he took a detailed history and ran a bazillion tests that I had not had done previously. (Red flag?) None of them, not a single one, was anything other than normal. This, along with all of the other information I gave him, led him to say that he can not see any indicators that I have the disease. I asked him if that means I don't have PSC. He wasn't willing to make that statement, but when I asked him if he had just met me with no history to go on, would he diagnose me with PSC, he said no. So it isn't really clear if I have it or not, but I have no indications of having it and I have decided to live my life with that knowledge. (While cautiously being monitored, of course.)

It was only in the weeks following this news that I began to realize how heavily this disease has weighed on me in the three years since I was diagnosed. How much it held me back from fully engaging in the tragedies our family endured in the months after. The losses we faced, the challenges we still face. I didn't realize it, but I had a sort of "short-timer" syndrome. My husband also realized that knowing what I was facing (even though we didn't) he was also detaching in many ways. realizing all of this has changed so many things. And even if I do have PSC, and I do eventually get sick, this is life-changing and we are happily moving forward in many ways!

Oh, I still have Crohn's. There is not a shadow of doubt about this. It still sucks.

So, with this renewal of mind, spirit, heart and soul, I figured it is time to renew the body, too. I have made this decision many, many times in the past. And I may have to make it again in the future. But one day, it will click and I will change and that day could be today so I have to keep on making the decision each day. I am always hesitant....ok I never tell anyone when I am trying to lose weight anymore because I am certain that they are rolling their eyes at me. I'm pretty sure my own kids do. And that's ok, I've earned it. I never announce that I have lost weight (4 lbs.!), I would rather wait until someone notices and asks if I have lost weight.

As I write this, I am in receipt of a letter from the radiologist who performed my mammogram last week. All clear! However, the verbiage leaves a lot to be desired. "We are pleased to inform you the results of your mammogram performed on 9/12/2011 showed benign findings (not cancer)." Ok, great! So, there were findings, they were just benign? If there were "findings", I want to know what they are! Benign WHAT?!?! Oh well, I guess big, bold, red letters that just simply say NO CANCER is too much to ask for.

I still make lattes. However I am having a couple of issues with lifting and can't lift more than 20 lbs. for the indefinite future so that may be an issue at work, and I am mulling over the idea of getting a full time position somewhere. Somewhere not in the service industry. One thing at a time, though....

Blogging? Maybe.

Why I Love Homework

I had my second meeting with Dr. Annie today. (That may be her name, it may not be. I'm not sayin'.) She gave me a few assignments. This perked me up, and I didn't immediately understand why.

I work part-time for the health insurance benefit, and to get out of the house a little. (Though that novelty has likely worn off by now.) But when I am at work I am expected to follow certain rules and codes. There are repeatable routines that I will get called out for not repeating. I am expected to show up, on time, and work efficiently and correctly until the appointed quitting time. Structure. Expectations.

Not so much the case at home. I suppose that being a part time work-out-of-the-home-but-mostly-stay-at-home-mom, I am expected to perform certain tasks and create routines. However, if I fail to meet those expectations no one is there to call me out on it. I am not going to get fired. I am not going to be replaced. It had never occurred to me until this afternoon that I may be missing that. No, I don't want to be fired, replaced or even criticized. And I certainly don't want my husband coming home and challenging me for not doing the dishes or vacuuming. No, that will not fly at all. (Are you reading this, honey?) So I am not really sure what I am missing in terms of meeting my family's expectations and what the ramifications of not doing so are. All I know is, I am in charge and the management needs some serious evaluation.

I feel that my illnesses and their symptoms- fatigue, frequent aches and pains, fairly frequent hospitalizations, fatigue and did I mention I am tired?- keep my family from expecting much from me in the first place.  And I don't just mean laundry and yard work. Setting goals, moving toward them and attaining them, no matter how large or how small, do not seem to be things that are expected of me. I think the people who love me have come to accept and love me just as I am, today. Today, I am tired, depressed, sick, scared, not very motivated and fat. Now I would be batshit crazy to not want acceptance of myself just as I am from my own family! Don't get me wrong, I know how blessed I am in this regard. But... dare I say it? It's not enough.

I want them to want more for me. I want them to want more from me. Of course, I need to want these things from myself, as well. And I do. Deep down, somewhere in the visceral soul of my inner, skinny, healthy, super-mom, sexy wife alter ego, I do. But there it is- I want cheerleaders. Ones who aren't just going through the motions, but truly want me to win the "game".

If my family had asked me to buy a day-planner, get a hanging file for my bills and begin a simple daily task to implement a larger routine, and I didn't do it, they would simply accept it. But Dr. Annie expects me to follow through. If I don't she's going to ask me why not and render a judgment on my excuses. And since this has nothing to do with making the perfect cappuccino for someone else, since I am charged with these tasks with my own benefit in mind, I hope I don't let her down.

So, what brings you here today?

That's one of the questions my new psychologist asked me today. I had no idea where to start. What am I dealing with or feeling, or what caused it all? What, exactly, do you want to know?

We started with my health, finances, cancer, my job, my husband's job, my kids, my oldest child and the fact that I did not raise him, the marriage and divorce that led to that decision, the relationship before that marriage, how my mother dragged me to Arizona, her two marriages after my father, how my father rejected me when I was 13, the deaths of my former husband, mother-in-law, grandmother, sister-in-law, father-in-law, father and friends. We touched on A.D.D., liver disease, Crohn's disease and food issues.

She ended with "Wow.". And we're just getting started!

On that note, more than one person has suggested I write a book of my memoirs. Well, this blog is pretty much covering that but I often wonder what it would be like to write it all down, in order. Would I learn new things about myself or those I have known if I sequence everything and read it all as it happened, versus remembering how it made me feel or impacted my life? Would anyone want to read it? And let's be real here. Would I actually have the attention span to get past age 6? Maybe I will just start and see where it leads.

My head is firmly planted in the sand.

I realized this morning that I have not seen a doctor. For anything. For a long time.

*Outside of a hospital, that is.

Granted, most of the day to day issues I may face are no reason to rush off to the doctor. Things I deal with frequently are simply a part of Crohn's disease or PSC. Since there is no cure for Crohn's and no real treatment for PSC, we just have to simply deal with things sometimes.

But I have avoided routine labs, my annual gyn exam, my mammogram (though I am not fully on board with yearly mammos), the dermatologist (where I occasionally have something "suspicious" removed"), the foot doctor I have needed to see for months, a doctor for the back pain I have had for months...... I am insured now, there really is no good reason to be avoiding these visits.

Except cancer, that is. The cancer my husband had, or my father, or my father-in-law, or my friends. The cancers that were found while looking at something else. The cancer I am at a very high risk for, and several friends are fighting right now. The very one I have also recently lost friends to.

Cancer is every-freaking-where. So why shouldn't it be here, in my body? I am fairly certain it will invade me at some point. That is probably unreasonable, maybe even irrational. But that's why my head is in the sand.

I used to be someone who would gladly go in to have my hangnail looked at. Ok, maybe I am exaggerating just a tad, but doctors have never been a group I fear. This has all changed. The deaths our family has endured. The illnesses we have faced. I have faced, and face each day. My age, and the apparently "normal" mortality fears that come with it. They are all keeping me home.

The truth is that I may go to the doctor for this or that malady and find it is something simple, treatable, temporary and otherwise survivable. So, why can't I just get up and go?

Because this sand in my teeth is starting to irritate me.

Music Is Not His Special Thing

That's what I realized today when I went to see Tommy's "Kindergarten Revue". As the entire class was singing and animating some adorable songs, my sweet Aspie just stood there, nodding his head side to side as he has done since he was six months old. I was heartbroken! I couldn't quite place why, but I was hurting. Was it because he is different, or because everyone could see he is different? He wasn't unhappy. He wasn't distressed. In fact, he giggled at the funny parts. But I was sad, feeling like he, I, we stood out like I always felt growing up. He sings and dances all the time at home. In fact, he is quite hilarious! I was expecting my little showoff to steal the show today, so perhaps I was simply feeling let down. 

Then we sat down to read from his book basket. He read me several books about animals, with big words and excited expression. (In fact, he was reading a book about how some animals look very much alike yet are not the same. Coincidence?) He read the higher level books as his classmates all around us sometimes struggled with basic words and read in bored monotones. It was then that I started to remember all the ways my son IS different. He is smarter than his peers. Reads at a higher level. Understands more advanced math. Retains an astounding amount of fact. And is unique in all the world.

Music is not his special thing, and that's ok. No version of Head, Shoulders, Knees and Toes could ever change the love I have for him.

Brain Fog

There is something called brain fog. No, it is not just a convenient way to say I don't have it together, or I am disorganized and forgetful. It is a "thing". Usually it happens to people with chronic immuno-suppressive disorders. It can arise from a variety of causes; excessive ammonia in the bloodstream (encephalopathy), vitamin or mineral deficiencies, medications, fatigue, hormonal imbalances, acute illness and anemia among others.

In my case, it's probably from Primary Sclerosing Cholangitis and Crohn's, though it is possible it could be due to Lyme disease. Or all three! There really isn't a good way to tell why you have it. And sometimes, it isn't even easy to tell that you do have it. For some, it is unmistakable. Clear, undeniable "brain fog" moments are obvious to everyone around you. For others, like myself, it can be much more subtle. Maybe you are the only one to notice certain slips of clarity, but you know it feels different than typical "brain farts" or "senior moments".

For me, when I have a brain fog moment, I feel it. I know it wasn't something typical, like forgetting an appointment. (Which I do, frequently.) There have been moments that have frightened me. Once I forgot the PIN for my debit card that I have had for years and use almost daily. I literally stood there for minutes and could not remember it. Another time, I could not recall the name of my neighbor. I went to his wife's funeral. We serve together on the Civic Association. I know him well. At work, where I make coffee drinks every day, I have forgotten simple recipes once or twice.

These moments and ones like them feel different. They feel different because I know they are different. They don't happen every day, thankfully. But because I have more than one poorly understood, not effectively treated and potentially life shortening chronic illness, I tend to take these moments with a slight feeling of doom. "This is it, the beginning of (the end)."

Just this weekend, I told relatives the same story a few times. I know this, because the third time I told it they said "Yeah, we know!". Then I forgot a party I had been invited to and responded to, and had even discussed with others. When it was mentioned, I said I didn't know about it and hadn't yet been invited.

So I'm not forgetting to feed my kids, or wear pants or anything like that. (Believe me, if I go out of the house pants-less it will be on purpose!) It's nothing earth shattering, or dangerous. Well, I guess I could get lost or something. (Luckily these moments don't last long and I am back on track in just a few moments, so I wouldn't get too lost.) It's just enough for my loved ones to think I am a total dumbshit sometimes.

*Note to self- Drive to beach for day and pretend to have had Brain Fog...

*Note to self- Not cool. Never mind.

It's disturbing because, while Crohn's and PSC may have my gut and my liver held hostage, I am still "here". Present and capable. And giving that up, even slightly and only for a moment, is not a compromise I am willing to make. It's a loss of control that is most unsettling.