A Busy day

March 19, 2009 at 4:31 am (BLENDED FAMILY, depression, family and life, life in our world of insanity, marriage)
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It’s been a busy time.  I have been searching for my replacement at the company.  It is a difficult job, because, I fear, that no matter who I find, how qualified, how expertly skilled they may be, my dear husband will have a difficult time adjusting to my not being there on a daily basis, as his gal friday as it were.  I think we have found the perfect person, and while I still have a few more interviews to do, I truly believe she is the right one for the job.  I know he will adjust in time, and it will get easier for him as it goes. 

I think the hardest part for me is that I have a tendancy to feel enormous amounts of guilt, and then I think “am I being selfish?  Am I thinking only of myself and my own needs?”  And I need to get over that.  I have always been a stuffer of feelings and emotions and have often allowed people to walk all over me, push me around, take advantage of me, often to the detriment of my health and well being.  And I just can’t do that anymore.  And this is the first step in the right direction of stopping that  behavior. 

Today was a perfect example of that.  I was not going to the office today.  I was determined, since the kids have spring break this week, to take this day totally off, take my daughter to her ortho apt, make them help me clean the house and get some things done around here that have been let go for way too long.  And I had told my husband this plan several times over the last several days to keep him constantly reminded.  I had also tried to let him know that I had wanted to only be available at the shop half days this week during spring break so I could be with the kids…but that didn’t seem to ever be working out…I was always pulled in too many directions…and the guilt…oh the guilt!

So, last night or should I say this morning, my husband gets home from work around 4 AM…we obviously don’t have enough help around there, and not enough money to help ease the work load for him either, but he knew that today was the day that I had intended NOT to be near that work place.  But, he had conveniently forgotten about my daughter’s apt and brought home a job that needed to be delivered that he was “thinking that I could deliver for him early this morning”.  Needless to say, the guilt….I delivered it, just made it to the apt, and carried on with my day from there.  It doesn’t seem like that would be that big of a deal, but just that one added little stressor in my day can throw things off for me to the point that I am out of sorts for the rest of the day. 

I managed to get a lot of the house cleaned…not as much as I would have liked to but I did get some done.  I am in some pain from doing as much as I did but I have to cram so much into one day, which isn’t the right way for me to do it when I am the way I am.  But I have to fit it in when I can.  I just wish that my husband would notice that it is a bit cleaner when he gets home and that i didn’t take the day off and just “sit around doing nothing all day”.  I even managed to take dinner down to him and have dinner with him and the kids tonight! 

I just hope that once I find the replacement, and things start to even out our life gets more normal and we can find a rhythm..that we can find a peaceful way to live and enjoy our life a little more.  Because right now..this isn’t really living…this is merely existing.  This isn’t how it should be I don’t think!

I need to change the subject for a moment and wish my sincerest condolences to the family of Natasha Richardson.  She was one of my favorite actresses.  Her tragic death was a sad end to a beautiful life and wonderful career.  My prayers and thoughts go out to her husband and family!

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My brain is foggy!

January 15, 2009 at 7:51 pm (family and life, life in our world of insanity, marriage)
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I’m not sure about any of you other’s out there with Lupus, or any other chronic disease for that matter, but do you find yourself planning your shower time around your life?  I find myself penciling in my showers/baths for when I think I will have the most energy to do it…I mean the fixing of the hair, shaving the legs/pits, just the whole thing.  Even putting lotion on can tend to wear me out.  I mean this bod of mine isn’t exactly tiny….it takes some doin to get all the bits and parts lotioned up.  And, I’m getting old besides so I need all the moisturizing I can get!  It wears me out just thinking about it!

There are days when I wish I was one of those really wealthy people who can afford to have someone do all this stuff for me, (not lotioning part, unless it were like …hmmm….Johnny Depp:) )  If I only had someone who could have a brain for me to remember things.  I forget from one minute to the next what I am supposed to be doing, what I was doing, where I was going, why I was going.  There are times when I get to the grocery store knowing there was a specific thing I needed and guess what….I have no idea what it is when I get there!  It is so frustrating.  That makes me tired…trying to remember!

My daugther turns 19 on Friday.  I certainly hope I remember her name on that day!  Seriously, sometimes it is scary what happens with this disease.  It turns your brain and body to mush.  And it isn’t too good on the self esteem.  There are so many days when I feel inadequate, old and antiquated.  And, I’m not really that old!  Inside I feel like I am still in my twentys.  Is there going to come a day when I don’t remember who I am laying next to in bed?  We haven’t been married that long…sometimes it seems as if we were cheated out of time by this disease!  And my kids were cheated as well.

All I can say is that I am thankful for the days when my brain seems normal.  And though they are sometimes few and far between, they still happen.  And for that I am grateful!

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here’s the thing….

October 10, 2008 at 1:56 am (BLENDED FAMILY, family and life, life in our world of insanity, marriage, the life of a lupus survivor)
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I’m tired.  Painfully, excruciatingly tired.  Business has been really busy.  That’s a good thing.  Nay, that’s a great thing. (Do you like my use of the word nay?)  Anyhow, work is busy. In this economy, we are all thankful for great business.  We thank God daily for good business.  We shouldn’t complain when we have good business.  In fact, I begin to feel guilty when I start to complain, and then I wonder if God will then take away some of our good business because I am ungrateful and a spoiled brat.  And that just wouldn’t be good at all.  But I digress.  So, business is really good.  There are only three of us at work.  Three measley little worker bees slugging it out on a daily basis trying to make all of our customers happy.  One of us just got diagnosed with Lymes disease….which, by the way…I was the one to diagnose before the doctors even did.  I tell ya I am in the wrong profession!  Anyway, and then there is me with lupus.  So, we are working our little tushes off trying to get all this stuff done as quickly as we  can with all the quality and precision in tact that we are known for.  that is critical.  My  husband works very long hours.  I am very proud of him and all the hard work he puts in trying to make this place a success.  He is a conscientious man.  He is smart and innovative.  Sometimes, however, he doesn’t know when to stop and end the day and come home.  That is one fatal flaw.  My dad had it…my husband has it…maybe all men have it!

I am tired.  I am on my feet 8 hours a day.  Running from my office to the shop, making dies, rubbering dies, sanding dies, hammering dies, whatever I need to do to help out.  And I hurt. I hurt all over, inside and outside.  My organs hurt. 

Now for those of you without lupus let me tell you how it goes, at least for me.  When I begin to spiral downward this is what happens.  I start to get tired.  I want to sleep all the time.  I get a little depressed because I just can’t keep up but I know I have to.  I have kids at home, I have a business, I have a husband, just stuff.  My joints begin to ache.  Often I get a bladder infection or an ear infection or the flu.  This time I am just in immense pain.  I haven’t had this happen before with this much just constant  unrelenting pain before.  Lower back pain.  I have, like I said, pain inside that feels like my organs hurt.  It’s like I have been excersizing for hours and hours without stopping.  I just ache.  My skin hurts.  My finger tips hurt.  As I am typing, the keys pressing on the pads of my fingers make them tingle like they are asleep.  My eyes hurt like when you have the flu and you have a fever.  My lips are cracked and chapped.  I have a slight sore throat. And I am horribly crabby.  I don’t want to talk to anyone.  don’t cross me or I may bite your head off. 

I am normally the most mild mannered person on the planet.  I very rarely complain or grumble.  Ask me for something and I will do my utmost to accomodate you. I have been through so many things in my life from childrens’ illness, to infidelity(And that was horribly, terribly devastating) and I think I handled those things better then I am handling this particular flair and that is seriously no lie!  Which is sort of scaring me.  The last few days i am surley beyond compare.  And I am exhausted.   I am beginning to feel (whether real or imagined) very unappreciated, overlooked, and well, a bit walked on.  Not just at work but at home as well.  There are jokes made at my expense about me “working hard when I want to work”, now maybe that was supposed to be funny, and made in fun, but I didn’t find it funny especially in the shape my body is in now.  Jokes about the “one piece of rule I hammered in to a board” NOT FUNNY!  Things like that I am not finding the least bit humorous!  And, again it could just be me, and this moment.  But, it is where I am right now, who I am right now, and well…my life right now.  I am a stuffer, it will probably never get talked about out loud, but, that’s life!

The worst part of all of it is that at this time I have absolutely no insurance whatsoever with which to go see a doctor.  And i won’t have any  until open enrollment in November.  Ahh the wonders of disability!

So, for now, I go on, hoping that this flare subsides in due time.  That I will get over it and move on.  That my family won’t kill me in the mean time…LOL.  I’m sorry to everyone that I have been witchy poo to. 

Right now I think I will go to sleep and try to catch up!  And to you other’s with lupus…keep fighting…don’t give up.  Don’t ever give up!

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Not a really great day….but….

July 10, 2008 at 3:12 am (BLENDED FAMILY, family and life, life in our world of insanity, marriage, the life of a lupus survivor)
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It could be worse. 

Yesterday was a long long day.  We have so much going on at the business these days….seems like when it rains it poUrs.  I’m sure many of you know what I’m talking about.   So, yesterday I rode into work with my hubby, which I normally don’t do…but I knew it was going to be a bugger.  We got the new bender…TAADAAAA….and we are so thrilled.  Training begins next week.  It is such an amazing new developement in our business and so exciting.  It was a needed open door for us!  We didn’t leave last night until after 8 pm.  We got there before 7am.  It was a long day for most working people.  For me…it was a day that seemed like an eternity.

Flourescent lights are my enemy.  Next to the sun….worst thing to ever be invented when you have Lupus…or at least in my case.  I need to stress at this point, again, that each person with Lupus is so different.  And the way we each fight and battle our disease is different.  But, I was in flourescents all day.  In my office I have a great lamp, regular light bulbs that I can turn on one or two or three.  But I had to be in the shop working yesterday.  There was no way around it.  The lights kill me.

Let me explain.  There are many “unpleasant results” to me spending too much time with flourescent lights.  Migraines is one.  The other is that my body, especially my back, my chest, my ribs, seem to cease to exist with any type of muscle or strength after I have spent time in the sun or under flourescent lights.  (congress’s push to ban regular lightbulbs is of great concern to me…but that’s another post). 

Last night by the time we got home I was exhausted.  Physically, mentally, and emotionally.  Because once again I realized how weak I really am and how much I want to be strong.  I want to be healthy.  I want to be super woman…wonder woman.  I want to be able to do it all.  Last night was a reminder to me that Ican’t.  Then this morning, the reminder got worse.  When i woke up I noticed that my chest hurt when I breathe in and out. 

I tried to go with the flow and keep moving.  usually standing still, not moving, being motionless makes things worse.  So, I got up and got going.  Then, while putting a very light bag into the car something went snap in my upper back.  I heard it, I felt it, and I thought I would fall over.  It was painful.  But, I had one of my step sons with me, didn’t want to cause concern so, I accepted the feeling of a knife sticking in my back, got in the car, breathed deeply all the way to the shop and  tried to go on with my day. 

Guess what.  It didn’t work.  I’m not as good as I think I am.  I couldn’t hide it, I couldn’t ignore it….it got gradually worse and worse.  By 2 PM I was feeling like death warmed over.  I just wanted home.  I never leave that early.  I’m a trooper, I am strong.  I am super mom, super wife.  Super everything….NOT TODAY.  And i am now depressed, disappointed in myself and ready to kick this whole lupus thing in the tail. 

My sweet hubby even constructed me this pathetic hat that looked like something the flying nun wore…to block the flourescent lights. 

I guess today I have to admit it. Today I am weak.  Today I don’t have much fight.  Today I am a warrior who needs to slow down and regroup. 

But today could have been sooo much worse.  I’m still home, I’m not in the hospital, I’m not on IV’s, I’m not “dying” today.  I’m alive.  I’m loved.  Today gave me a great opportunity to talk about some important stuff with my youngest step son.  it was a  chance to heal some wounds, to be open and honest.  It was a time where he felt safe to share with me what’s in his heart.  Today could have been much worse.  And I love the knowledge that all of that is absolutely true.

so, through it all….there are still glimmers of grace in my life!

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