Do What You Love, Love What You Do....

I keep seeing variations on this theme everywhere.  Live the Life You Love, Love the Life You Live - well you get the idea.

The problem - I can't.

The Life I Love?  Would not include dementia and giving up on any hope of a career.

Love What You Do?  Well I guess I can be proud of what I do - take care of my husband, advocate for his needs, make sure that he gets everything he needs and deserves.  But do I love it?  I can think of things I'd love more than being yelled at and taken for granted.  Many, many things.

Live the Life you Love - Love the Life You Live - well if you can do that I guess go for it.

Going back to my roots - or going full circle?

Things have gotten to the point that I just feel trapped.  I feel betrayed, lonely and trapped. I'm not sure how to address this and I keep wanting to go back to my roots, back to the days when I went to church regularly, when I prayed prayers that were not just pleading for mercy, when I felt part of a community, and felt love from a group.  When I believed that God loved me and had a plan for my life. I sure can't think this was the plan and I'm sure that somewhere along the line I deviated from the plan and got sent off into this alternate reality.  I don't know I've gone round and round with this, fate versus destiny versus luck (or lack of luck) and I keep wanting to go back to the place that made me the girl I was 20+ years ago before I took this crazy path.

I guess I'm looking for someone to help me make the best of my current situation, to support me in the life I have now and to give me some hope.

So next Sunday I'll be setting foot in church, specifically the church I used to be a member of, where I taught Sunday School and directed the choir and sang solos on Sunday morning.  The church I left in 1995 when I chose that horrible guy that led me astray over the life I thought I was meant to live at the time.  Many additional choices past that one lead me to where I am today and yet I feel going back to this place, and these people may be the place to start healing some of this pain.

I know it won't change my situation - a husband with dementia who takes his frustration at the world out on me - but perhaps it can change the only thing that I control - my reaction to his abuse, my heart.

Sad tonight...

Something happened while at the super bowl party at my work tonight.  I'm not sure what.  My husband was hanging out with some people who were customers, and they seemed to be getting on famously.  They chatted for hours and then he said something that offended them.  I don't know what it was.  But they left, they had planned to stay through the game but they left around the end of the 3rd quarter and went home.  The husband came back to get a pizza they had ordered to go and I tried to apologize (even though I did not know what was said) and I tried to explain that my husband has dementia and is mentally ill.  This man was like a stone, he told me I just want my pizza and he walked out.

I went in the bathroom and cried.  And I cried on the way home (we had driven separately so husband does not know I cried).  And I'm crying now.

I don't know why this situation has me so upset, but it does.  I don't like that he hurt strangers with his words, and I don't like that they were angry with me too by association.  And I feel like maybe I'm going to have to start keeping him away from the public or expect to do a whole lot more apologizing.

Still here, still hanging on...

Marriage counseling is brutal, not sure if it is going to help or if it is going to make me want to run.  The things that are coming out are horrible, bad feelings and arguments and it just doesn't feel productive.  The therapist is just an intern, she is working on her master's and she is young and never married.  Not sure she really has any insight for us but she does try to keep things on track and not let it get too ugly.

I probably need to get my own therapist but so far I'm making do with this one, he listens well, never contradicts me and will lick away my tears to hide the evidence.

I am also spending a lot of time becoming very domesticated.  No not cleaning although I need to spend more time doing that but I have canned peaches, made quarts and quarts of tomato sauce that I canned and finally made and canned applesauce.

I am quilting up a storm, sewing is relaxing and keeps my hands busy.

I scour pintrist for projects and for the most part am fairly successful at the things I try to do but I have never had a talent at decorating cakes.  Just doesn't work out for me and I follow the instructions to a T and still I have this:

Ah well this cake is for my friend Marcia's birthday - she will appreciate the deliciousness of it even though it looks like a sad excuse for what it was supposed to be.  

So I'm soldiering on, some days  are better than others.  

And the bad news is....

Despite a fairly long period of no major changes in my husband's disease state it has become apparent that his MS has begun progressing again.  He had been switched from a diagnosis of Relapsing/Remitting to Secondary Progressive.  This was not unexpected and in fact the lack of major relapses has been a blessing for approx 5 years.  However he has weakened considerably in the last few months and his last neurology consult showed that he has no feeling in his right leg, he cannot differentiate between hot and cold and feels nothing when pricked with a pin.  It's a good thing we got the hand controls on his truck several months back as that leg is not very strong on reflex either.

MRI's have been scheduled and follow up visits planned.  And a chain of worrying has started in my brain.

Making less and having more...

5 years ago I had a very good paying job and so did my husband.  We were comfortably middle class and living well within our means.  We had a nice house and nice cars and we did pretty much what we wanted.  It was not a bad existence.

And then the bottom dropped out, his MS progressed, in Oct 2008 he quit working without a plan and I had to scramble to find a plan while continuing to work full time to pay the bills.  I filled out the VA application for him for service connected disability in April 2009 and then we waited.  Until June 2009 when I was suddenly let go with no warning.

Now no one is working and I'm bringing home $430 a week from Unemployment.  I know people who live on less than that BUT they did not have my mortgage or my two car payments, or my bills.  Panic set in briefly until I figured out that thanks to the VA Pension that my husband WOULD be granted he would continue to be paid for his entire life.  And his IRA's were probably NOT going to be as necessary in the future as they were right then and there.  So we cashed them in a bit at a time and we lived on this to supplement my unemployment until he started getting his VA pension in November of that year.

I started working part time at waiting tables, and we were making ends meet.  Not too terribly long after his VA pension came through we applied for Social Security for him and he was granted that as well.  All of a sudden our finances are a little less scary.

Then right as my COBRA is running out and I am taking a job just for health insurance his unemployability rating comes through and I am now qualified for dependent health care through a federal program called CHAMPVA.  I still took the job but minus the health care deductions that would have eaten up most of my pay.  Still I feel panic that we are just waiting for the other shoe to drop.

And I get laid off from that job too after just 9 months.  In time to enjoy my summer greatly. And I do, and my winter too collecting unemployment and starting to build my consulting business.  I got called back to the job but after just 3 months I quit as it just isn't working out for me and the VA travel is not working out for my husband.

His mother had recently passed away and money from her estate and a car from her estate allowed me to sell my car and take on a car with no payment this allowed me to quit that job.  And yet all the time I am worried that I made some grave error.

And yet when I did my taxes this year and realized just how much I am making from my consulting and from waiting tables it suddenly came to me - we are pretty secure.  I can stop worrying about this from day to day.  It seems someone has been watching out for us, things happen just when we need them and we are not just comfortable, for people in our situation we are pretty well off.

I'm almost afraid to breathe a sigh of relief, there are still things we need to do (life insurance for a start) but for right now I can stop waiting for that other shoe to fall.  For right now we are pretty secure and in this economy that is saying a heck of a lot.

Just very thankful to have one less thing to worry about right now.

Minor Humiliations...

This shouldn't humiliate me and yet to a minor degree I felt some humiliation.

Friday Night at the Restaurant - in walks a large group of 13 people that I do not know BUT wait I do know one of them.  One of them is a man who was a Brand Director for a company that I worked for 5+ years ago when I was a Brand Manager and he was my boss.  Back when I was someone important.  When I had a STAFF that reported to me.  Back when I worked 50+ hours a week and traveled on business and garnered respect as I climbed the corporate ladder.

He recognized me because he said hello to me by name.  But that was it.  He did not ask how I have been since I left there 5+ years ago.  He did not seem interested in why I was now taking his pasta order rather than managing a team of brand marketers somewhere.

I wanted to explain - when I left that job my husband was still relatively healthy, walking, working full time at his own career.  I wanted to say how far I went before realizing I could no longer be part of that corporate world and still fulfill the promises I made at the altar that day 13 years ago.  I wanted to tell him how my own private endeavors that I work at less than 20 hours a week are providing an income just shy of what I made when I worked for him.

I didn't want him to think I was just a waitress.

But he didn't ask so I just brought him his food and acted like I didn't care.  I did.

Breaking through the other side...

I have been reading some of my old blog posts, it's always good to see where you have come from.  It amazes me when I read the posts full of pain, fear, depression, posts where I felt alone, trapped, abused.  Some are hard to read.  Some are down right dramatic.  I am amazed though as I read them to realize I have come through all of this and while life is far from perfect it's a whole lot better than I ever thought possible just 2 years ago.

We have settled into a more comfortable place.  My husband is more stable in his disease and less combative in his day to day dealings with me.  He has resigned himself to the fact that we live here, in NY, and that it does not make sense for use to move.  He has made some friends in the veterans community and I have made friends as well with some wives.  We have friends with a common perspective, with common struggles and it makes a big difference.

His meds are fairly well regulated, he is much happier overall and the depression has lifted some.

I am no longer deluding myself that a full time career is my destiny.  I am happier working part time jobs and doing my own thing than I could ever be in corporate america after all I've been through.

So maybe this is why I'm not writing all the time anymore - my prolific posting had to do with misery and depression and I'm just not there anymore.

I miss writing though, I'd like to try to do more of it.  I still have plenty to complain about but pet peeves really are not as interesting as real heartbreak and sorrow.  I'll take my rather uninteresting life though, it is much more peaceful these days.

Wasting my education...

I know many people think I'm wasting my education and my talents by working part time as a waitress.  I know my husband really thinks I should be making use of my master's degree and making a boatload of money.  And yet I am happy not having a "career" right now.  I'm able to make some money, visit with people while they are out having a good time, and available to take him to appointments and go camping and take a 7 day cruise.  I'm able to stay up late and sleep in.  To mow the lawn on Monday morning (after sleeping in of course) rather than getting up at the crack of dawn and driving an hour or more to a stress filled day.

Granted I need to do more with my life - I'm working on getting my home based marketing consulting business going.  And yet ambitious I am not, not at all.

It's weird, so not where I envisioned myself when I was working hard to earn that MBA and now that it is just a very expensive piece of paper framed on my wall, I still know that it was a great thing for me at the time and that I have no desire to take on the kind of long hours, high stress job that come with the title of MBA.

I'm perfectly fine being called "waitress" and I don't mind hearing "miss, could I have more coffee?"  With it comes more serenity than I ever imagined possible.

So I blacked out the other day..

Was in a doctor's office when it happened, not my doctor. My MIL's doctor. Not sure why or what happened but was standing near my MIL as he was asking her questions and checking her when I started to feel funny, then dizzy and then I decided I had to sit down and the floor was my only option so I sat.

At this point the doctor notices and asks if I'm okay I say I feel dizzy and just need to sit. Then I'm feeling queasy and both hot and cold and the black starts to creep in from the edges. I am seeing in a small tunnel in front of me and sounds are muffled and then black until something horrible is shoved under my nose (ammonia) and I start to come back out of it.

No idea why this happened. My MIL said I was white as a sheet. Her doctor had me lay back and put a cold wet cloth on my head. Within 5 minutes I was fine.

The thing I find odd is I passed out in a doctor's office and they didn't do a damn thing about finding out why? Didn't take my blood pressure or listen to my heart. Asked if I had eaten (I had) and didn't take a blood sugar to see what caused it. Now granted I was not his patient and not there to see him but don't you think he should have done more? I would have gladly turned over my insurance card if he wanted to bill it.

At the time I didn't think about it much but my sister was incensed that they did nothing to figure out why I just keeled over like that.

Anyway I see my own doctor in a week and a half for a regular appt. Will be getting bloodwork done next week first. Will be sure to mention it to her and nothing has happened like that since.

Right before it happened my MIL had been showing her doctor a sore on her leg that was about the size of a quarter and all black and blue. I am not at all uneasy about stuff like that. I had seen the same sore earlier that day when she changed the bandage. I have seen MUCH worse things. Blood does not gross me out. I think her doctor did not believe me and figured I just passed out at the sight of blood. It definitely was NOT that.

Oh well - no problems since and felt fine to drive my MIL back home after the appt. Very strange feeling though.

Week 2 of Unemployment...

The living room, dining room, kitchen and bathroom are clean! I'm catching up on laundry, I'm doing maintenance on these rooms daily in an effort to keep them clean. It's time to tackle the most cluttered room in my house, the one I'm embarrassed of, the one I don't want anyone to see. Well in the interest of being honest I am going to show you this room. Consider these "before" pictures and I hope to get some after shots SOON!

This is the spare bedroom, where I keep all my clothes and my office is here. As you can see working or relaxing in here is impossible - but not for long.

Now not tackling this all in one day but doing a bit at a time until I've cleared it out. I will post after pictures. This room is where stuff goes to die, and it's time to get rid of a ton of that stuff. :)

More drugs please...

Another VA trip today - another drug increase. Please drugs -make him happier.

Reinventing myself once again...

Time for a change. Job clearly didn't happen. Stuck in a bad place for me and it's time to get unstuck.

So here goes nothing - I'm reviving my Design Firm - graphic design, websites, shopping carts, social media marketing, blogs, and more!

And come September I plan to be enrolled in a Post Baccalaureate Teacher Certification Program that will allow me to become certified to teach in New York State - this will be paid for courtesy of the VA thanks to my husband's 100% disabled status.

I will take whatever shifts I can from the restaurant, and scrounge for business however possible for my design firm. I will no longer be selling advertising - now to get up my nerve to make the jump.

He tried to quit smoking again...

Remember Florida? 4 days of hell thanks to him "trying" to quit? Yeah he's doing it again. Been a total bear for 3 days and today he buys a pack and gives up after absolutely torturing me.

I'm going to sneak patches on him while he's sleeping I think.

Bad Morning...

The husband woke up around 5am to go to the bathroom.

He didn't wake me up BUT he woke Max up. Now Max is whining to go out. I ignore him.

At 5:30 I can't ignore anymore and get up to take him outside. He is out there for 10 minutes and I think he's done his business so I let him back in.

I realize he had an accident in his crate so I'm cleaning that up when he disappears into my office. I run to him to find him taking a dump on the floor. I yell NOOOO and pick him up and carry him outside to the kennel where I leave him.

Back inside to clean up the deposit in my office and to finish cleaning the crate. (All before 6am)

Look outside to find Max sitting on the deck looking in the window. The little shit got out of the kennel somehow.

I'm perplexed - he can't go underneath in any spot (concrete pavers) so how did he get out? I find a spot where the wire is separated just enough for a 24 pound dog to wiggle through.

He's back inside in his now clean crate and I need to find some wire to go fix the kennel before I take a shower and go to work. What a start to my day.

Oh and the husband who woke up at 5am to use the bathroom that started this chain of events? Yeah he's sleeping soundly. Lucky bum.

I really wish I could go back to bed and just start over.

Lead me...

Show me you're willing to fight,

that I'm still the love of your life...

I know we call this our home

But I still feel alone.

If only...

This song makes me sad - I am tired of having to be the strong one and yet that will never change for me. NEVER! :(

Slow start to 2011

Still hopeful, still hanging in there, but expecting miracles end with disappointment. People don't change overnight and sometimes they don't change at all. We however are changing, very slowly, but the old hurts are still there and trust doesn't come back overnight.

We have a lot of people praying for us, that has to be helping.

My favorite Christmas Song

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I have always loved this song and all versions of it but Robert Downey Jr. singing it from Ally McBeal is probably my favorite. Couldn't find the whole song online but have it on my ipod and this time of year I play it over and over.

I wish...

All about meme...

My young friend Kristen has posted 30 random and obscure facts about herself on her blog and so I though I might copy her and do the same just to liven things up a bit.

1. Despite all outward appearances I am really a pretty insecure person, I hide it well most days

2. I tell people I didn't want any children but secretly we tried and it just didn't happen and now I am thankful it didn't as my husband requires more attention than any child and I think a child would resent that.

3. I read all 4 of the Twilight books and I didn't hate them.

4. I have read all 7 of the Harry Potter books and LOVED them.

5. I am probably going to see Harry Potter and the Deathly Hallows part 1 today because I can't wait much longer.

6. I love The Biggest Loser - and I aspire to get off the couch and get working at it one day, but I also secretly think about gastric bypass and how that might be the easier route.

7. I am a Christian, I don't attend church as often as I should but I do work with the youth group religiously. I get much more from our youth group meetings and the kids than a regular service.

8. I dream of building a barn and having a goat farm.

9. I am an officially licensed Dairy Goat judge and have been for 18 years.

10. I have an MBA and sometimes think about going back to school again for more degrees

11. Despite #10 I am not a highly ambitious person anymore, I would love to be a housewife and a student rather than have a career.

12. I am a dog person - love the unconditional love you get from a canine companion.

13. I am also a cat person - adore the independent spirit of a cat and how the deign to love you despite your imperfect humanness.

14. I am a waitress - part time - and have been off and on for years. Of all the jobs I've had I think I love waitressing the most, people are typically happy and having fun and I get to have fun with them.

15. There are mistakes I've made that I would totally go back and change if I could, even if it means I'm a different person today because of it. Maybe ESPECIALLY if it would change who I am today.

16. I am a republican, conservative, and not ashamed of it. I don't talk politics because I consider it a waste of time, but I am not ashamed of what I believe in.

17. I am pro-life and proud of it. I am working on a trip for our youth group to take them to the 2011 March for Life on January 24th. I think it's an experience they will never forget and will change them for the better.

18. I love to sing, I once dreamed of being a professional singer when I was very young and a big fish in a very tiny puddle. I still love to sing but I know I'm not all that.

19. I wish I could play an instrument and I own a keyboard and a guitar and cannot play either.

20. I am stubborn, very, very stubborn when pushed.

21. I can be very competitive when challenged. A competitor in my job (a competing paper) recently challenged me and I told her straight out "game on"! I want to crush her.

22. I love Facebook - and spend too much time on there

23. I twitter too but am mostly over twitter, just do it now and again and have cut back on who I read.

24. I have been married 10 years, things are far from blissful these days. :(

25. I recently found out that I qualify for free healthcare through the VA because of my husbands disability. As long as I stay married to him it's for the rest of my life.

26. I say I can't stand reality TV but I watch Survivor again.

27. I was a LOSTie and I am very sad without LOST every week. I was not thrilled with how it wrapped up and ended.

28. I am tired most of the time, would sleep 15 hours a day if I could. Maybe it's depression?

29. I dream of getting on a plane for a tropical destination with a suitcase full of good books and my bathing suit and sunscreen. I would lay under an umbrella by a pool sipping frozen fruity concoctions and reading for a week. I would not tell anyone where I was going.

30. RE #29 I'm not sure I would come back.

Hell Froze Over

Seriously, my husband admitted he was wrong about something major. It might be a first for him.

I went back to work full time about 4 weeks ago and I am no longer home to be at his beck and call, to drive him to everything he needs/wants to go to. He has driven himself to the VA twice without major incident (which is great because I was afraid he couldn't managed that) BUT he doesn't like it. He wants me to go with him, wants me to be able to go to Ohio for a week or more at Christmas and I can't because I don't have vacation time yet. He admitted that I was right in my original desire to only work part time so I could be available to take him all these places.

Now I'm working too much and I'm tired all the time and I don't want to go places or do things with him. I just don't feel like doing anything after I've spent all day in my car driving around and talking to people and being rejected over and over (I sell advertising and for every yes I get there are 10 no's). When I get home I want to relax, make some dinner, watch TV and not deal with people. He has been home all day and wants to go out to eat or to Walmart or Target just to get out of the house.

Something will have to give 0r maybe I will just get used to it all but my crazy schedule has me home only 2 nights during the week and on those nights the husband wants to make me go out too and I have to revolt.