Wisdom from my walk

I am so mad.  the dog that attacked Bo was just off of a leash and in my yard, it lives half way up the street so it’s not like my yard is right next door.   Caleb and Bo were freaking out.  Bo went to hide in the basement and Caleb was telling him to get away and telling me to shut all of the doors including the garage door I had left open for them to get to their bikes.   I yelled at the person who had him out and said she needed to get the dog on a leash and out of my yard and if she wasnt on a leash in 5 minutes I was calling the police.   this is why I wish we have called the police the first time.    I am going to have to talk to her owner as much as i dont want to.  My boys are seriously afraid, to the point they may need to see a counselor, seriously.   Not to mention we were lucky our boys werent outside when the dog was out there, I dont even want to know what might have happened.   Luckily our dog, who was in the house too, alerted us that the dog was in our yard…yay Ginger!   blah….I am sooo frustrated!!

last night we watched the special about Randy Pausch and his last lecture at Carnegie Mellon.   I was in tears and amazed as were most people by his view on life knowing he was going to probably die from cancer.   I’m sure I’m not the only one to have joked that I felt like I was dying when bed ridden w/ the flu or worse, only to recover and get on with life and forget all about it.   there are times when I’ve felt worse than that of course, the flu I mean…meningitis was pretty scary, but even then I had a feeling I’d get by!  On some of my really bad days I wonder if it all is the beginning of the end, that they wont truly figure out what’s wrong with me til they do an autopsy(thanks gregory house for that line! )  this past week and a half I was a bear to live w/ I am sure.  After my appointment last Friday I was ready to call it quits and do nothing but run and hide.  I couldnt stand the let down of being told to go deal w/ it and forget about it…”it” being how badly I feel!   I eventually slept off those initial depressed  feelings and got on w/ things, having 3 kids helps you do that, you really dont have a choice sometimes!  well I guess you do, but those are the same parents that we keep hearing about killing their kids….and then themselves.

So the point is…..I would love to be as brave as Randy Pausch.  To be able to say that knowing his days are truly numbered, he’s still able to live life and enjoy it.  hearing him talk yesterday from the tv was as if he was giving me a wake up call.   How dare I whine about my suffering, it’s not like I’m dying, or as far we know ! So today I got up and went into work and then went to enjoy lunch w/ my hubby(and bo and zeke) since he was going out w/ co-workers for dinner.    Caleb had early dismissal today and I promised he and his friend we’d go to the zoo today if the weather held up again, so I took the 4 boys, my own and my friend’s son to the zoo til almost 5.   It was a lot of fun and would have been perfect if I hadnt been so tired and groggy on the way home! but it was worth it, really it was.  The boys had a lot of fun and I am still a sucker for the zoo for some reason, I love seeing the animals up close like that.

I’m trying to stay positive.  I gave in last Sunday and am doing the trial of a new med that the doctor thought might help.  it seems to have helped w/ the migraines really well and is cheaper than my last migraine med, significantly cheaper, so that’s good.   but some of the other symptoms are still there and the fatigue really isnt going away either, but then again I’m staying busy so maybe it would if I would just chill out and take some down time… until then…tomorow and the next few days, week even are going to be busy.  My friend is directing the high school musical so we’re keeping her kids as much as our schedule allows so they will be here a lot the next few days.   What’s 2 more boys when you already have 3?!?

so I apologize for being so down right bitchy last week and bailing out of my commitments because of my illnesses, and am hoping to get back on top of my mood now that the sun is shining and the temps are warm…as long as the weather man was wrong about the possible flurries this weekend! (which is ridiculous , it was nearly 70 today!)

well off to watch some tv, I sent Dean to the store for some essentials I didnt get to get today because I was too busy and I’d rather not take 3 little ones to the store tomorrow.   I used to do all of the shopping when I could during the day so we wouldnt have to do it at night, but lately I’m too busy and I’ve been sending Dean out more and more after the kids are in bed, and it sure is nice to not have to go myself!!   🙂   gotta love my wonderful hubby…

well enough randomness for today, might have something interesting to post tomorrow.  but then that would mean my life was actually interesting!

I guess all of you praying for me got what you wanted….the MRI was normal.  I do not have MS.   That’s the good news right? yet I feel more upset than ever.  I feel so badly that I am willing to accept any diagnosis no matter how grave if it means getting treatment and even momentary relief.  Instead I was basically told to deal with it and get over it.  Whatever.    I FEEL HORRIBLE.  as I sat in front of that pompus dr feeling shitty he dared to say that to me, I quickly told him it’s easier said than done and he pulled a line I would have liked Dean to clip him for..well I’m the dr and you have to listen to me. Truth is no I dont.   I will find another dr and try again.  I cant manage three kids let alone myself some days feeling this way.

the truly good news of the day..which the neurologist tried to make seem stupid as well…was that I got my CPAP machine.  I am praying after one night of good sleep I feel better than ever..but dumb dr today said it probably isnt worth the money and bothersome side effects of using it…..blah on him.  he tried to dash all the hopes I had today but until I use it and realize for myself it’s pointless well than there is still some hope I may feel at least a little well rested soon.

I’m in a very bad mood, it’s raining out and I need to pick the boys up from school and hope Zeke naps afterward…I would love a nap myself as my head is killing me but no naps for me…off to do what the dr ordered…suck it up and live life….forget about how shitty I feel and get on with it…geez seems like that’s what I’ve been doing for 10 years……when is enough enough???

Today I went into “work” at church.   I like to call it work, # 1 because it is actual “work” and #2 I like to think I have something real to do every once and a while!   But…it’s not a paid gig, other than the free childcare, which really is a good deal when it comes down to it.  So basically I went into my volunteer job today eventhough I felt pretty bad.  On the way there there was stopped traffic on the highway so I took a different exit and went a longer route to avoid sitting in traffic since I was already nearly falling asleep, but I guess others took the same way I did so I still sat for a while in lights and traffic!   I got to work late and felt even worse than I did before I left, but I figured at least I wouldnt be doing anything physically engaging like taking care of two rotten toddlers, so it would be helpful for me to sit and do some work on the computer for a while while I could enjoy the peace and quiet.   After talking to my boss, who I like to think of as becoming a good friend through the process, I went to the desk where I usually work.   It’s a desk w/in the office where the normal church employees work but this desk is empty and is generally used as needed by volunteers.    Today I walked up to my cube, yes, I even go as far to call it my cube because I spend all of my time there when I’m there, and thought I’d been replaced.  Or at least that my desk had now been occupied by a real employee and that I’d have to find another empty one, I thought this because there were plants and a nicely decorated bulletin board and the space was nice and neat and had lots of little decor of personality strewn about.   I figured whoever it was wasn’t obviously in then so I’d sit there since it was only my short day today so if they came in I’d leave and find another computer to work on.

But a little while later my boss came over and said ” oh yeah I forgot to tell you” vand I interrupted( i have a bad habit of doing that to people…that’s a skill I really need to work on) and said yeah I figured I’d stolen someones desk and would have to move eventually…..” she explained that it was indeed my desk and that she’d made it homier for me and that I could add anything I wanted to the space.  So basically she’d decorated my desk and made it so nice just because!   I couldnt believe it.  It was sooo cool to know that she wanted me, a lowly volunteer, to feel at home amongst all the paid staff.  folks who make me feel so inadequate, folks that when I walk by make me feel like I’m in the wrong place….simply because they all do so many great things, their jobs alone are ones I’d only dream of being able to have one day.    to be able to call this place your “work” is a great privilege in my mind, and I’ve told Dean time and time again how much fun it is to work there, and all I do is volunteer.   to be at home amongst people who call the ministry their full time job……I love our church for so many reasons and being able to feel so invited and welcomed into their “work place” makes it even more awesome!!  thanks Claudia!

As I left I knew I’d needed that…that one another “bad” day I needed to feel needed and cared for.    I slowly made my way to the kids and got them into the car and realized the drive home was going to be another challenge for me.   I have been so tired and my head so fuzzy and overall just plain out of it that I dont think driving is a good idea but sometimes have no choice.   I called Dean and begged that he come home early so I picked him up on the way home and as soon as he was in the car I closed my eyes and prayed it would all go away.  I came home and went to bed and stayed there til I heard our friend come to pick up caleb for his first baseball practice…I didnt mean to nap that long and really wanted Dean to be able to go out this evening to a get together to say good bye to his closest co-worker who is leaving for Florida, but here I am in bed and feeling just as miserable.  I didnt think sleep would help but I dont think I’d be up for watching the little ones alone w/ feeling so faint and dizzy.   I’m hoping once the kids are in bed he can go out and I feel horrible for keeping him home for such a special night.

I’m hopeful that most of these symptoms may go away once I’m sleeping w/ the cpap machine, it’s amazing what lack of oxygen can do to you….and that’s on Friday.  Also on Friday is the appointment to get my MRI results.   I keep telling myself I just need to make it to Friday…that the end is in sight, that if nothing else I might get good sleep and have more news about whats really wrong w/ me.    I’ve got plans to work again tomorrow morning and Dean and Caleb have cub scouts tomorrow night, so I’m solo w/ the kids again in the evening.   It’s kind of good to have things to keep me busy but today at work I knew it was bad when other people could tell how badly I was feeling.   I tend to hide things well when it comes to how I’m feeling.  Today I didnt have enough in me to do anything and put on a happy face, so I just went through the motions of the day and tried to get through it.    I told Dean it must be pretty bad for it to have gotten to me so badly.   I am usually able to get through the day and still laugh w/ the kids and enjoy things.   the saddest part was I know how awesome it is that Claudia went through so much trouble to decorate my cube, yet as I sat there I wasnt able to enjoy it, I was so miserable feeling that all I could do was acknowledge it.

I hate feeling this badly, so badly that I am actually getting depressed.   I just want the pain and crazy symptoms to go away…..but for now I guess I’ll just veg in bed and accept that today’s not that day and be grateful to a hubby who’s sacrificing so much for me right now that I feel even worse for keeping him home from his good times.  both of us shouldnt have to be miserable…..

after a lazy week in Baltimore I would have thought I’d come home refreshed. I was happy we got home early yesterday, around 2:30 p.m. Dean spent some time cleaning up the garage while I worked on unpacking the stuff he’d unloaded into the house from our trip. We went to dinner and walmart to load up on groceries.   The kids were in bed at a reasonable time as were Dean and I.    Yet this morning I again awoke feeling horrible.   I made myself get up and get going, even took the boys to my friends and went to curves to work out.   Halfway through the circuit I realized I might not be able to finish but slowed down some and continued on.  By the time I got done and was stretching I became really worried and wondered if I’d be able to drive myself home, but in the end I was able to and went back to get the boys and chat w/ my friend.   I struggled through lunch time and getting Zeke down for nap.    I finally crashed in my bed letting Bo lay there watching tv.   I could barely move and really thought I might be slowly becoming paralyzed.    I dont know if the exercise made me feel worse or if was the new migraine medicine I took after getting home from curves in hopes of making my head feel better or a combination of everything going on.  thankfully my friend picked up Caleb from school and bo eventually fell asleep so I got about a 30 minute nap.   I still feel horrible and my whole body is all tingly, like pins and needles vs. itchiness.    that’s the best way I can describe it.   I’m in pain and I’m exhausted.    I felt pretty crappy like this all of last week while we were gone and I just hoped it would get better, so I thought maybe getting back into exercising would help…but now I’m really worried about things.    I have an appt to see the dr and get my MRI results this Friday, I really wish that appt was sooner, at least that way I knew I’d have answers while feeling this crappy.  Dean and I agree that this is definitely getting worse and this is how things tend to go…which concerns me that I may finally get a diagnosis of MS because I will feel fine some times then go through horrible flare ups when days seem unmanageable for me(which is hard w/ three kids!)  I’ve convinced Dean to come w/ me to the appointment on Friday, that way even if it’s not MS he can help me ask the right “what’s next” questions.   and if it is MS that way I’m not alone to deal w/ the news!  We’ve been through this before and I know that I will probably feel better eventually but days like today make me worry about the future and my ability/inability to take care of my kids.

As I laid in bed this afternoon w/ Bo he had called Dean on my cell phone(by calling the last number called) and I was somewhat relieved  to know that if something were to happen he’d at least know how to call someone, even if it wasnt always Dean as the last number called, but that anyone I call on that new cell phone would be able to help him since there’s not many numbers on it still!!    At one point during their lunch time I was on the verge of calling Dean and begging him to come home or calling my dr because I felt like my arms were going numb and my legs were so weak.    I hate feeling this way and I hate complaining about it.

our last night in Baltimore I was awoken around 3 a.m. ,I think, by my friends husband who asked me to come upstairs that something was wrong w/ my friend(his wife)  As I walked up the two flights of stairs in silence I was afraid she was having a heart attack or something.   she was having horrible stomach pains and was very upset.  I did my best to talk her through it and she eventually calmed down and was settled back in bed.   we think she may have had an ovarian cyst rupture, since I’ve had that before and ended up the ER it sounded like the pain was similar, that or it was really really bad period cramps.     But as we sat there she talked about how I handle the pain I go through all of the time….as I sat there with her I didnt know what to say…here I was praying she was ok and worried out of my mind and she was reflecting on how well I handle things like that.   I think in the midst of it she may have forgotten how much I complained that week about feeling badly!   I dont think I handle any of this well, esp on days like today.    I feel like I have spent all day complaining about how I feel.    perhaps thats why I feel so much worse than normal…no I doubt that.  I just wonder if I have a true view of myself and how well I do or dont do on my “bad” days.  I mean I did manage to do a lot today…curves, got dinner in the slow cooker and then completed later on, did some laundry, took care of the kids, including letting them make a big mess w/ their new paints that the Easter bunny brought them…..I know I do get a lot accomplished despite how I feel but I still think I dont react well to how I feel.    I think it still affects my family relationships and social life.

I worry about this being the beginning of more bad days then good.   But I know I’ve gotten through phases like this before.   I have hope, I really do…but feeling this bad makes me still doubt.  and I’m sure that’s pretty normal, I just wish I had more faith and less doubt….

Today we hung out at all the hot spots….Science Center,the harbor Filettis subs for dinner, Rhebs candy for a snack this evening….more games w/ friends tonight. Yesterday Susan, Caleb, Bo, Zach and I went bowling while the lil’ ones napped and Dean played games online at home.  The GOOD: A few days ago I got a haircut and left there w/ hair I’ve always dreamed of!  (I am sooo happy about it!) The BAD: We had to get new tires this week after visiting my dad and running over glass killing a tire, one of the 2 good ones we had so we went ahead and got four new ones. The big boys, Bo and Caleb are spending the night at my moms tonight. Kind of frustrated that we haven’t seen that many people, somewhat our own doing, somewhat the ball is in other people’s court. They know we are here, I drove 500 miles do your part and get here to see us. Apparently no one cares enough to do that though, instead we have to drive all over if we want to be seen. and I’m not feeling up for it, I’ve been feeling crappy all week, and knowing this time next week I may know what the MRI results are from last week isn’t helping me feel any better! I think we’re leaving here Sunday morning, then it’s back to the same old same old. and lots of doctors appointments….hoping if anything the answers bring w/ it a treatment that works. as always….tons of pics up on Flickr.

Pics from the weekend and our spring break up on Flickr.  I will try to upload them every night if I can.   we spent the majority of the day w/ my family and then this evening playing games w/ friends after the kids were in bed.    I LOVE being able to be w/ my friends again.   We had a blast this evening!!