Thursday, September 30, 2010

Too Busy? Or just a bad case of mixed priorities?


1.  actively and attentively engaged in work or a pastime: busy with her work.
2.  not at leisure; otherwise engaged: He couldn't see any visitors because he was busy.
3.  full of or characterized by activity: a busy life.
("borrowed" from

“The really idle man get nowhere. The perpetually busy man does not get much farther.” 

- Heneage Ogilivie Sr.

Busy.  I hate that word.  I am so very tired of hearing that word.  Everyone is SO busy now-a-days.  Or is that just an excuse?  


Yes, everyone's busy.  However, you are only as busy as you want to be.  Everyone has the choice to slow down.  Yes, I know you have twenty kids.  All of which need help with their homework and wiping their butts.  I know you "have" to go have drinks with friends.  I know you have a charity event to go to, a football game, a basketball game, clean your house, do laundry, take your kids all over town, go shopping, etc.  Yes, you work "a lot".  You have SO much to do, and SO little time.

It's called priorities.  Everyone say it with me pri-or-i-ties.  You don't have to do any of those things, other than work, obviously.  Even that can be adjusted.  You don't have to work 120 hours a week (or whatever godly number of hours you work).  You don't have to take your kids all over Timbuktu.  You don't have to go to that football/soccer/basketball game.  You don't have to go have drinks with friends (okay, maybe that last one you do.)  

What I just absolutely can't stand is when people constantly say they are so busy.  I'm sorry, I can't take you to the doctor, grandma, I'm too busy.  I'm sorry, I haven't talked to you in weeks, brother; I'm just so busy.  I'm sorry, I haven't called to see how you're doing; I've been _______ (fill in the blank with 20 things you've been doing).  

Everyone can make time for things.  It's what you choose to make time for that makes you so "busy."  So please don't tell me you're too busy to come help me with things, call me to see how I'm doing, etc.  Next time we talk, why don't you just be honest with yourself.  You're not too busy, you're too busy for me. 

You know.  I'm okay with that.  What I'm not okay with is people who aren't honest about it.  How about, "I'm sorry I don't have time to help with that this time, but I'd love to help you with something next week."  Or,  "I can't come over and visit with you tonight, thanks for the invite, but how about next Tuesday?"  Or, "I really can't talk right now, but I'd be happy to call you back later."  Notice that not a single one of those sentences has the word "busy" in it.  Now don't think you can replace the word busy with "I'm helping my kids with homework, cleaning the house, washing my hair, doing laundry, picking my nose, working, trying to figure out the meaning of life, and fixing dinner; Can I call you back later?"  Now, if you really are too busy to help with something next week, visit me next Tuesday, or call me back later, then you need to take the time to figure out why you are too busy for those things.  Is it REALLY because you're "too busy" or is it because you have other things to do that are more important???



Thursday, September 23, 2010

What A Difference A Day Makes

 Just like the title says... What a difference a day makes.

Last night I actually got enough sleep for a change.  The two nights prior to that I had slept hardly at all; either because of my brain going a million miles an hour or because storms were keeping my 4 year old daughter and my 4 year old dog awake.  Why can't it storm during the day???

Today, Chris, my husband, called me to let me know that he was re-hired at the company he worked for through the temp agency prior to this last job that only lasted 3 weeks (jerks!).  This time, however, he will be working directly for the company and not for the temp agency.  They are also going to start him with benefits when they have open enrollment sometime in the next month, instead of making him wait the normal 90 days.  As you can imagine, we are both thrilled.

I also received a phone called from my insurance company this morning.  My doctor's office finally faxed the letter of medical necessity to them.  They were calling to let me know that I have been pre-certified for 6 months worth of out-patient care at KUMed.  That includes any doctors that I may see, and tests I may have done within the next  6 months.  It will all be paid at the in-network rate instead of out of network, which is what KUMed is.  Once again, excellent news.

Now you're probably thinking I must be jumping up and down with joy.  Well, as much as I don't want to be a pessimist, it's very difficult right now.  I am having a MUCH better day today and I have more hope than I did yesterday.  Of course, that's not saying much.  This is just one small step up.  Chris will still be keeping his eyes open for other opportunities, as this job does not pay much at all.  Considering the fact that we need two paychecks in order to pay all of our bills, and I usually make more than he does, we have a long way to go still.  (Chris is going to kill me for announcing that.  Sorry, honey.)  When it comes to the pre-certification, that is also just a small step.  I still have to actually get in and see the doctors.  I also have to convince them to run further tests than what I already had done at Mayo.

So, while these are steps in the right direction, we are still climbing a 14er and only at about 3,000 feet.

Wednesday, September 22, 2010

This rant is rated R for vulgar language and situations

Fuck the world! Fuck this life!

I am beginning to think I need to give up trying to have a "normal" life. A life like we had a year ago.

Last Monday, September 20th, my birthday of all days, my husband lost his new job after being there for only three weeks. He has been unemployed for over a year. He went back to school to get multiple IT certifications last fall but graduated in the end of Jan. It took him until 3 weeks ago to finally get a job. That doesn't count the temp position he had for a month. That place even kept stringing him along telling him they were going to hire him on permanently, in which they obviously didn't do.

So over the last few weeks things were actually starting to look up for us a bit. He was going to get insurance which would save us from having to pay $1400/month for Cobra and he was getting a somewhat decent paycheck. It was not going to solve all of our problems, but it was a huge fucking start.

This last Monday, the company he was working for decided he was not experienced enough to work there. He did, however, make it more than abundantly clear at his interview that he had just started out in the IT field and that he didn't have much, if any, experience. He also informed him that it had been 6 months since he was done with school and things would have to slowly come back to him. Keep in mind, they only gave him 3 fucking weeks to prove himself.

UGH!!! I really don't think I can take this shit much longer. When are things ever going to get better? Everyone wants to comfort me by saying "things will get better", "it could be worse", "so-and-so has this and that going on", etc. Okay, I'm sick of hearing that crap. I know it could be worse. It always can. I can think of a million awful things that could happen and then think of a million worse things that can happen. Things will get better??? Really? When? Because so far we've been dealing with unemployment issues and my health problems for over a year now. I don't want to hear that it will get better because until it starts to get better, and stays that way for a little while, I don't care. I want it better now! I don't want to be rich. I don't need to be able to run a god damn marathon again. I just want to be able to keep a roof over our head, feed our children, and go to work everyday. I just want my husband to be able to go to work everyday.

I thought I had a hard time dealing with things a few months ago. At that time I went through a depression that I haven't seen since I was a teenager. Well, as of right now, I'm not depressed. I'm fucking pissed!!!

In addition to the problem of my husband's job situation, I have been feeling worse for the last week. It's because of stress, you say? Nope. I started feeling worse 4-5 days before my husband lost his job. My muscle pain in my hips/glutes is getting almost unbearable at times. My muscle fatigue, primarily in my lower extremities, has also been worse over the last week.

So I am the type of person who believes that instead of just bitching about something, do something about it. Well, I'm freaking trying. I am doing everything I know to do.

I had an appointment with the neuromuscular doc at KUMed on Sept 27th, but they called and said they had to reschedule for Oct. 15th. Lovely. Two more weeks to wait. So, in the meantime, I am getting precertification from my insurance so they will pay the in-network amount since KUMed is out of network. I would like to be able to call KUMed to see if there have been any cancellations so I can get in before Oct. 15th. However, I need precertification first. Well, what is the hold up on that, you ask? My doctor's office (my pcp) needs to send my insurance company a letter of medical necessity. I asked them to do so about a week ago, and they still haven't done it. I called yesterday and today to bug her about getting it done.

SO... In regard to me making money. Well, I have found that working even 6 hrs makes me feel completely awful. I am, however, going to try to still work one 12 hour shift a week in order to help with our money situation, even if it does make me feel like crap for two days. (All that's available is 12 hour shifts since I work at a hospital) I decided, since I have been feeling worse over the last week that I am going to try to apply for social security disability (SSDI). I was going to wait until after I talked with the neuromuscular doc further and possibly more tests to see if something else was going on that I can put on the application. I have heard from multiple people with "just POTS" that have a very hard time getting disability. I went ahead and called my pcp to make an appointment to talk to her about disability. Guess what!!! She doesn't do that stuff! Of course not. She sends her patients to an orthopedic doc. My problems have absolutely nothing to do with anything orthopedic. Plus, he wouldn't know me from Adam, or Eve, or Mary, or Jane. (Mmmm... maryjane) Sorry, got distracted. Now what was I saying?

Yesterday, the first full day after my husband lost his job, I decided to try to get help with our bills, etc. This was funny. (not really, but I have to laugh or I'll explode) In order to get assistance with our mortgage or our utilities, we have to be near foreclosure and/or close to having our utilities shut-off. What the fuck!?!? So we get penalized for continuing to pay our damn bills on time even during a time of financial hardship?!

It's going to take a whole hell of a lot to keep me from going crazy with everything that we have going on.

Wednesday, September 1, 2010


Over the past couple of months quite a few people have noticed, and pointed out, that I have been more active, that I look better, and that I'm doing better in general. I, myself, have been responding with a resounding "good" or "getting better" when people ask how I'm doing. Unfortunately, you can't believe everything you see or hear.

Don't get me wrong, I am "getting better", but I'm hardly ever "good". However, it's not a drastic change by all means. The big change that I have noticed, and I think everyone else is noticing, is my attitude. I was having a VERY hard time dealing with my illness and all of the changes in my life it caused. I have, over time, learned how to better deal with being at home everyday. I have learned who my friends are, and who aren't, and not to expect anything from anyone. I have learned how to deal with my chronic pain, or I've just gotten more used to it. I've also learned what I can and cannot do, what makes me feel worse, and what makes me feel better. (Unfortunately, one of the lessons I've learned is that drinking a couple of glasses of wine used to make me feel better, now it makes me feel worse.)

One of biggest lessons I've learned is how to lie. I know. That's not a great thing to start doing. But you all have to admit... Do you really want to hear me complain about how crappy I'm feeling all the time? Wow, I could hear the screaming "NO" from here! I, personally, wouldn't want to hear one of my friends or family members do nothing but complain. I even get sick of hearing myself complain. So, I lie.

There is one problem with lying about how I feel and responding with "good" or "great" when people ask how I'm doing. People start thinking I'm doing good or great. Not that that's entirely a bad thing. However, it's not always a good thing either. The problem I've noticed is that people seem to expect a lot more out of me now. If I'm doing better, why am I not going back to work full-time? If I'm doing better, why can't I run errands all morning? If I'm doing better, why can't I have sex every night? Okay, no one actually expects the last one out of me (except for me of course).

I have told everyone what the doctors told me about POTS; that it should slowly get better over time. Well, the pressure's on. I should be getting better, right? As I said earlier, I am getting a little better, but the key word is "little". If we're talking about physical manifestations of my illness (not that big bad depression I kicked out), some have gotten better and some have gotten worse. My fatigue is a little better, but I still get tired really easily. My dizziness is better most days, I think because of the meds, but I still get dizzy when I stand up if I haven't had enough water or salt that day. The decrease in the severity of my headaches has been the most drastic change. I am usually about a 1-2 daily instead of the 5-8 I was before. The problem is that as those things are getting better, a couple of symptoms haven't changed or have gotten worse at times. My muscle weakness/fatigue with very little activity has not changed and the pain in my muscles, primarily in and around my hips, has gotten worse.

To put all of this in real world terms... I went shopping this morning. I was there for a little over an hour. By the time I was standing in line to pay for my stuff, my legs were so fatigued they were shaking when I was trying to stand up from a squatting position. The muscles in my upper thighs, hips and glutes are in a lot of pain now (which they always are if I do much activity at all). I am so fatigued that I haven't had the energy to do anything but lay on the couch.

So please understand that I appreciate everyone asking me how I'm doing, but if I respond with a resounding "good", that means that either I don't want to talk about it, or I don't think you really want to hear how I'm doing. It usually doesn't mean I'm actually doing "good". So please take it with a grain of salt.

And with that... I have to go lay down now as all this typing has made me tired.