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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What a weekend!

November 10, 2008 at 6:16 pm (BLENDED FAMILY, family and life, life in our world of insanity, marriage, the life of a lupus survivor)
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Wow was this a weekend.  Was last week a week!  My body is in rebellious mode after all of last week and the weekends activities.  Work was swamped.  WE have not had a week like that since we started the business.  It’s a good thing, bringing in revenue and increasing sales, but for me it was a tiring and seemingly endless endeavor.  I felt so bad for hubby because he worked horrendous hours all last week, not getting home often until after midnight.  I stayed with him until as late as my body could handle it, which was probably too late all things considered.  But the guilt becomes so overwhelming for me that I just oftentimes can’t let my body win.  So, I tend to not listen to it when it tells me it has had enough…which gets me into serious trouble.

Our main guy was on vacation so that made things even worse.  And of course then I feel the guilt when I am not home with the kids, to make dinner, help with homework and all of that.  I was pretty close to a melt down on several occassions, but I don’t want my kids to see me do that, nor do I want my husband to.  So, I’m holding it all in hoping things even out.

The good thing is that Carrie Underwood was this last weekend.  And, although hubby and I were tired beyond words, we went and it was an amazing concert.  WE had a great “datenight” just the two of us and spent some quality time just enjoying each other and being away from work and kids and pressure for that short amount of time. 

Saturday, the process began again however.  We worked all weekend long even enlisting the help of our kids which was a huge bonus for us.  We managed to get a lot done with their help that we had no idea how we were going to get done.  Then, Sunday, hubby decided to cut his finger open on some steel rule and it was a fun trip to urgent care to have him put back together again.  Once again, thanks to the kids who continued working while we sat in a waiting room, the work got done and we felt much better about things….that is …until the alarm went off this morning and we felt as if we had had no weekend whatsoever.

But, looking back over the whole thing I can honestly say that we did get to spend some time with our kids, even though we were all working, we laughed, went to dinner together, joked around, and actually made some memories together.  The concert was great and well worth missing some extra sleep for.  And, we found out that we can actually make it, just the two of us, when our third member of this little business is gone!  That’s huge.  While my health may not fair so well going through times like this too often, at least I have seen that I can do it if I have to.  That’s also huge!

So, here’s to the good, the bad, and the ugly and making some good come out of all it!

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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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I need a me day.

September 17, 2008 at 2:44 pm (BLENDED FAMILY, family and life, life in our world of insanity, marriage, the life of a lupus survivor)
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Good day everyone.  It’s another hump day here in AZ and I am feeling like the weeks lately are dragging by.  The heat is getting better here, but still in the triple digits…so for me still a killer.  The kids are back in school, which can be a blessing and a curse, as all you parents know.  And work has been hectic.  Being a business owner in this economy is scary to say the least.  We constantly have to be on our toes looking for new business leads and keeping up with old clients to make sure that we are keeping up with everyone.  I’m trying to hard to keep up with my husband, but i’m afraid I’m just not doing so well.  Everyday I feel a little more fatigued, a little weaker, a little more “not myself”.  I’m not sure of the direct cause, I just know that healthwise I’m not where I want to be.  I so yearn for normalcy…but what is normal anyway?

I need a me day.  I need a day that I can sleep in, and just laze around without having to worry about everyone around me.  I’m a care giver…which I am sure most of you mom’s and stay at home dad’s can relate to.  It’s what i do.  I take care of my family, my kids, my home, our business.  I even fix lunch everyday at work for all of us.  That’s who I am.  And, I’m not saying it is wrong to be that way.  That’s really who God made me to be.  But, I believe, every once in awhile care givers need to be given care.  We need to be pampered, selfishly taken care of, and rejuvenated so that we can do our jobs to the best of our ability.  It has been a long time since I have been “cared for”. 

Don’t get me wrong, my husband loves me, and like all bread winners he would say his care for me comes in the form of earning a living, keeping a roof over our heads etc.  And that  is all true.  My kids love me.  But like all kids they “expect’ to be cared for by mom.  It’s what mom’s do after all isn’t it???  We have mother’s day that is dedicated to us, that should be enough.  But, even mother’s day tends to be a day of being a caregiver for our families. 

I’m tired.  I don’t want a big vacation to Maui, or a long cruise down the riviara(how do you spell that anyway?)  I just want a day or two that is for me.  And, as we all know, those days don’t work at home.  Cuz we sit at home and stare at all the stuff that needs to be done, that we feel like we need to get done and haven’t, and that relaxation time becomes stress time over all that hasn’t been finished.  A spa is expensive, and in this economy who can really afford a spa day without worrying about whether or not using that money will take a bite out of something else that needs to be paid for?  So, where do we go for a day away?  I’m not sure.  I haven’t figured that one out. 

Then, the question becomes, how do I tell my husband and kids that I need a day or two away?  I need some time to recoup, to rest, to reenergize myself before my health goes totally out of control?  My husband works so hard.  He works a million hours a day trying to keep this business afloat.  He puts his heart and soul into it.  I know there are days when he wants to throw in the towel and say forget it.  I know he wishes that he could have a day or two alone to rest.  So, if I took a day would I just sit and feel guilty knowing he is still working? And, since there are only three of us at the shop we really can’t afford to just take off for a day or two and leave it a lone.  That could be business suicide for us.  Right now, though, I don’t feel like I am much good to anyone.  i can’t stay focused, which those of you with lupus know as the lupus fog, I don’t feel well, I’m tired constantly.  So, am I helping or hindering? 

Maybe my kids and husband all wish I would take that day away.  Maybe they see that I am not all here right now.  Who knows. 

Maybe I will just have to escape in my dreams at night.  Not quite the same, not quite a real get away, but maybe better then nothing.

All I know for sure….is I need a me day!

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