tag:blogger.com,1999:blog-49488135049653809892024-02-08T03:34:28.408-08:00MS JonesA letter to myself RE: Life and memories with Multiple Sclerosis.Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-4948813504965380989.post-84515524902359294822014-07-28T13:43:00.000-07:002014-07-28T13:43:11.547-07:00I'm Bent... Thanks Matchbox 20I've been walking across songs and finding more that truly speak to me now. We all like this song or that one when it's popular on the radio and maybe even have favorites. I'm noticing today that songs that weren't top of my "playlist" at the time they were released have suddenly become ones that tell the "The Story of My Life".<br />
<span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">If I fall along the way</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Pick me up and dust me off</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And if I get too tired to make it</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Be my breath so I can walk</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">If I need some other love, then</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Give me more than I can stand</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And when my smile gets old and faded</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Wait around I'll smile again</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Shouldn't be so complicated</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Just hold me and then</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Oh, just hold me again</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Can you help me I'm bent</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I'm so scared that I'll never</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Get put back together</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Keep breaking me in</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And this is how we will end</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">With you and me bent</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">If I couldn't sleep, could you sleep?</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Could you paint me better off?</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Could you sympathize with my needs?</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I know you think I need a lot</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I started out clean but I'm jaded</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Just phoning it in</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Oh, just breaking the skin</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Can you help me I'm bent</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I'm so scared that I'll never</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Get put back together</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Keep breaking me in</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And this is how we will end</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">With you and me bent</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Start bending me, it's never enough</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">As I feel all your pieces</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Start bending me, keep bending me</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Oh, until I'm completely broken in</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Shouldn't be so complicated</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Just touch me and then</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Oh, just touch me again</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Can you help me I'm bent</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I'm so scared that I'll never</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Get put back together</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Keep breaking me in</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And this is how we will end</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">With you and me will let them</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Without understanding</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Here I go there again</span>Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-40778969537609921192014-07-28T13:23:00.002-07:002014-07-28T13:23:44.900-07:00IT happened...Well... it happened. You dreaded it for 3 1/2 years. Now she's gone.<br />
<br />
And you are lost.<br />
<br />
You are doing good at faking it. As usual. It's actually hilarious to you in a sick sort of way because nobody knows how messed up you are inside. Everybody hugs you and says you are strong and an inspiration. When all you can do is... well, Blind Melon said it best:<br />
<br />
<span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">All I can say is that my life is pretty plain</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I like watchin' the puddles gather rain</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And all I can do is just pour some tea for two</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">and speak my point of view</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">But it's not sane, It's not sane</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I just want some one to say to me</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">I'll always be there when you wake</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Ya know I'd like to keep my cheeks dry today</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">So stay with me and I'll have it made</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And I don't understand why I sleep all day</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And I start to complain that there's no rain</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And all I can do is read a book to stay awake</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And it rips my life away, but it's a great escape</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">escape...escape...escape...</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">All I can say is that my life is pretty plain</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">ya don't like my point of view</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">ya think I'm insane</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Its not sane...it's not sane.</span><br />
<span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;"><br /></span>
<br />Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-70013752540223499172011-10-21T14:01:00.000-07:002011-10-21T14:01:33.992-07:00Life with MSSo here's what's bugging me today:<br />
In February I started Avonex. It was rough for about a month, but when I figured out the particular "cocktail" of meds to take with my shot my symptoms started to get better. Since then, things have been going great!<br />
<br />
Well, not really. I have felt better. More energy, better balance, better strength. But my liver has been hurting since I started Avonex. Dr. Crowe ran tests on everything but the liver and found nothing. I just stopped pressing the issue because it costs so much to go to the dr. And I have insurance!<br />
<br />
The energy increase is probably from the caffeine that I have been taking. Yep. A No-Doz, Stay Awake, r Jet Alert. Whatever form of straight caffeine comes cheapest in the bottle. One of the tablets is equal to about two cups of coffee. So I justify it that way. Caffeine is not the enemy! It's the carbonated, chemical-laden beverage that is! Or, it could be the 6 cups of coffee a day that you are drinking. For me, the one tablet.<br />
<br />
My migraines are almost non-existent now. Well, until this week, but I will get to that in a minute. I think, since February I have had maybe 2 big migraines. I used to have one a month at least!<br />
<br />
So like I said, things were going well, but not perfectly. I was faking it pretty well, I think. Even fooling myself.<br />
<br />
Dr. Bashir was well pleased with the positive progress I was making. He was distressed by the liver pain though. So he said that I couldn't take ibuprofen and tylenol as my symptom reducers with my Avonex shot. he gave me another drug. Mobic. Supposedly an NSAID like Celebrex.<br />
<br />
Needless to say, I was very nervous. Things might not have been as perfect as I was making them out to be, but I didn't want to go back to the severe flu symptoms that I had in February either. But 3 hours before I took the shot, I took the mobic. And nothing else. Like the good little girl that I am. <br />
<br />
I will admit that I was cold before I took the shot at 7:30pm. It was not a cool night, so this was not a normal feeling, but I got under the blanket and was fine. So it was fairly normal. About 2.5 hours after I took the shot, the symptoms started. Usually I have a major increase in the burning, sensitivity, and stinging in my skin, so I was not surprised when that started even though it was earlier than normal. But about 9:30, when Andy came to bed, I was freezing. I put two thick blankets over me, wrapped up in my thick chenille robe, put on pants, socks, and a long sleeve shirt, and then had Andy put two more lighter blankets on me. I even put on a head cover. I thought I just needed to warm up. I was trying to "positive think" myself out of what was actually happening.<br />
<br />
Around 10:45 I gave up the ghost. I woke up chilled. Not hard chills, thank God. I got up and decided I had given it the old college try, so I gave in and took 2 ibuprofen and 2 tylenol. I was feeling feverish and chilled, so I decided to warm up in the tub. My fever was 102. After the hour long hot bath, 100 and no longer chilled. I felt like a wimp. Giving in to the drugs. But I was p'd off that my cocktail was dismantled in the first place!<br />
<br />
So I have been flat of my back all week, basically. In bed on Monday, but on the couch the rest of the week. I have felt awful! Beyond that, I have been depressed all week. Depressed because I was sick, depressed because I am losing time that I need to be working on items for the craft fair, depressed because I went 5 days without a bath, and depressed because I may have to do this all over again next week!<br />
<br />
You see, I called the Dr on Tuesday and told them what's up. The nurse called today and said they are changing me from Mobic to Celebrex, but to still avoid I&T, if possible. Although I am allow one tylenol, if absolutely necessary. Hmmph!<br />
<br />
Here's the thing. In February, I suffered with the severe chills, fever, aches, and days of not feeling well. It got better. I figured out that for me, taking an alleve before the shot and then two ibuprofen and two tylenol 2 hours after the shot would alleviate all side effects of the Avonex. It was the perfect combination. Everything was going great.<br />
<br />
Well, not really. Apparently my liver didn't like the cocktail anymore than it would have liked an alcoholic cocktail. So I will have two tylenol waiting for me by the bed when I do take the shot this time, even with the Celebrex. I'm a renegade.<br />
<br />
Geez! So NOW the nurse calls me back and says the Celebrex is on a step therapy with my insurance. Forms have to be filled out! My insurance won't cover Celebrex (Step 2) until I have used Mobic for 30-60 days (Step 1). My nurse said that she has gotten approval before, but sometimes not too. She said the Step therapy is for arthiritis sufferers, not for MS related issues.<br />
<br />
Whatever. I'm getting to go back and have my cocktail of drugs. I will at least feel better next week, even if my liver won't. <br />
<br />
This is totally a soapbox issue for me. This is a personal example I am using. The hospital charged $15.49 for nasal spray. It was basically Equate brand nasal spray that was $0.97 at Walmart. BCBS paid the hospital $3.59 for the spray based on the contract the hospital has with BCBS. Now, the person who walks in from the street without insurance must pay the full $15.49 for the spray. That uninsured individual can "settle" their account for less, but it will negatively affect the individual's credit rating! I mean think about it! In the day and age that home insurance companies are folding for having to pay out more money than they can afford for repairs, you would think that health insurance companies would be feeling the same effect! Although you have to realize that home insurance companies are paying people based on real and actual prices for goods to replace their home. Home insurance companies are not making contract deals with Ace, Lowes, and Home Depot to pay a cut rate for products! Home insurance companies don't restrict the retailers or repairmen you can use to get the products and repairs. BCBS is not the only bully in the school. All major health insurance carriers and HMOs do this. Hospitals are going broke because they have to mark up prices to cover the amount they lose from these insurance contracts, but the mark-up has reached a critical limit where people without health insurance coverage can't afford to pay to pay the difference. Where is the news expose looking at the difference in the business management of Health insurance and Home insurance? Where is the news magazine that show the public hwo health insurance companies are have increasing revenues even in this economy, while home-owner insurance companies continue to fold in areas of high claim rates?<br />
<br />
Are you covered in soapy bubbles now? Sorry. Signing off now.Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-76990635598649068912011-08-23T18:11:00.000-07:002011-08-23T18:11:56.111-07:00All in all...Mom's CEA is down to 15! Yippee!! She's on a new med and is losing her hair this time, for real.<br />
<br />
Things rocked along after wanting something done about that breast lump, and I forgot about it. Aunt Patty was diagnosed with Breast Cancer at the beginning of August. That got me to thinking again. Definitely larger when I felt it. I couldn't really find it in April, but now it is obviously there. So I went to Dr. Crowe, and he ordered an ultrasound. Here are the results:<br />
<ol><li>Radiologist said it was lymph node</li>
<li>Angie Boyd said it was lymph node but looked large and mis-shapen. She also said that she would have a biopsy just for peace of mind.</li>
<li>Crowe is in Africa. Always is when my family has a medical need, it seems. Mainly because my family is always having issues in August/September.</li>
<li>Crowe's office called and repeated exactly what the radiologists report said.</li>
<li>Uncle Terry and Aunt Marilyn, Rona, and Andy all say to have a biopsy.</li>
<li>My insurance will not pay for a biopsy unless Crowe refers me to a surgeon. </li>
<li>Crowe, even though I haven't asked yet, won't refer me based on the results from the radiologist.</li>
</ol>So why do I still want a biopsy? Because everyone else that has had a "spot" has had a biopsy! First time especially! Better safe than sorry! I seriously ignored symptoms the year before I was diagnosed with MS and refused to go to a neurologist at Crowe's suggestion. Now, I want more aggressive care, and I can't get it. My next mammogram is in October after the 26th. I'm still frustrated, and I still have that "feeling" in my gut.<br />
<br />
My gut feeling may have had something to do with the tumor that is Andy though. It was a close call with this one. I considered surgically removing it. Decided that serious treatment was required. Things are better so far. We are trying. Both of us. It's actually an effort for both of us, but neither of us want to leave and we both love each other. Then we should work on it, and we are. Whole-heartedly!<br />
<br />
Patty had her radical mastectomy today. I'm praying for her so much. I've seen how this looks after in photos. It has to be rough. I dont know much about her treatment plan either. They are pretty closed mouthed. I haven't called, and I am feeling guilty about it.<br />
<br />
Paul is still not taking any treatment. He won't get a second opinion either. We are frustrated to say the least.<br />
<br />
Rona's sister Rene was diagnosed with breast cancer two weeks ago. I haven't heard from Rona yet. I called and left a message but I know she needs space. I worry about her, and Rene.<br />
<br />
Megan started her job at Dr. Stanfield's office. She loves it. I love that she is getting paid and can pay for her own things now. I'm freaking out about her turning 16 in a week!!! Plus it is weird that I am taking her to LBW in the morning and picking her up at work in the afternoon. I don't really see her at school. She doesn't work on Friday-Sunday. She thinks she doesn't have to do anything on the weekends. She just lays around and watches TV. But hey, I would too, if I could.<br />
<br />
My newest love...much better than YouTube...is Pinterest! YouTube has great ideas, but Pinterest lets me pin my favorite ideas of EVERYTHING, including videos, from all over the web! Love it!Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-79579735001038888782011-06-05T19:20:00.000-07:002011-06-05T19:20:00.721-07:00The latest and greatest...What's the latest and greatest?<br />
<br />
<ul><li> Mom's CEA (cancer marker blood count) is down to 20 from a high of 239!</li>
<li>Your weight is down! You have lost a total of 65 pounds in 2 years! Don't blow it now!</li>
</ul>There are the low blows too...<br />
The mammogram you had in April came back questionable. So you went for the second one. It was "probably benign". Yep, you didn't like that wording at the time either! You asked your doctor for a US, but the insurance wouldn't pay. So you have to wait for the 6 month anniversary of the 2nd mammo to have another compression mammo! The pain in your left breast was awful! 2 weeks it hurt!<br />
<br />
A cracked tooth left you with pain in the jaw for 2 weeks too!<br />
Syd had a C in science. Which made you realize that you are NOT doing well in the supervision of school work in the evenings. And to make matters worse, it appears that Syd is a mini you. You were horrible about lying about stupid things and so is she. You wouldn't do homework or study and neither will she. The bright side is that you turned out ok. However, the scary part is that there were so many wrong turns that you took that could have ended so badly! You definitely don't want Syd making any of those bad decisions. Pray. Pray more. Then Pray even more.<br />
Andy is still here. What does that mean? It means that after the 4 sons and a stupid Match.com incident, you still stick with him. Why? Because deep down you do love him. He makes you laugh. He is the best friend you have. He says he loves you. More importantly, the kids need him. You need him...financially and for taxi service. Does that mean you will stay with him forever? Yes, I love him. He would have to really screw up again.<br />
<br />
Turning the corner...<br />
Financially life still sucks. I don't know if we will ever have breathing room! I do hope so. How will we ever help the kids with school?<br />
<br />
MS is fair. Today sucked, but you are really doing great. MAybe it is the weight loss. Maybe it is the fact that the Avonex gives you more days in the week that you feel good, that you actually can plan around, that you can now do more! No matter the reason, physically you are better. :-)<br />
<br />
Nancy Matos is an AWESOME friend from YT. Hope she is still txtn and messaging the next time I stop by for an update...<br />
<br />
Be you.Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-56315988767854906362010-08-27T13:49:00.000-07:002010-08-27T13:49:02.292-07:00The day my life started to end...We all go through life growing, experiencing, working, doing... But have you ever considered that you are basically working so hard to get to the end of your life? I hadn't either. Until Monday...<br />
<br />
I will begin my story in the spring of 2010. I can't pinpoint exactly when the feeling came to me, but I do remember waking up one morning knowing that something bad was going to happen to someone around me. I immediately felt that it was my mom. I have always had this "sense". No I am not a psychic. It is VERY underdeveloped. I can't be sure. Plus, I forget to trust it a lot. In this instance, when my mother-in-law died, I thought that was what the feeling was about. The feeling hadn't gone away though. <br />
<br />
On Monday 8/23/10 Mama went for a check at the dr about her gallbladder. She had been diagnosed with diverticulitis three weeks ago. More on that later. Monday he ordered a ct, because her liver was enlarged and the gallbladder symptoms. The ct showed masses in the liver and a large one in the colon.<br />
<br />
That night the dr called and told her to get to West Florida Hospital because she needed massive amounts of antibiotics. She got here and they found she was severely anemic and have given her 4 units of blood up to this point. They said the antibiotics were not for an infection but for the immune response to the cancer. I came down on Wednesday morning for her colonscopy procedure. The surgeon was unable to even attempt the colonoscopy because of mass was so large it was almost closing off the bowel. They told us it was definitely cancer Wednesday afternoon. <br />
<br />
She had surgery Thursday 8/26/10. Dr Patrick Dial removed the affected sigmoid colon...8 inches of it. Resected the colon and no colostomy!! The liver was inoperable. The masses were spread everywhere in the liver. Over 2/3 of the liver is affected. Because of the spread, there is no way to remove the bad without taking some good, which would leave her with nothing. He found a tumor on her right pelvic wall as well. It was wrapped around the ureter. He dissected on it, removing what he could. There is still tumor around the ureter, so we pray that the chemo will work on it. The consideration here is that the ureter could be blocked resulting in her needing a stent or kidney failure.<br />
<br />
Her CEA was 230. It is a tumor marker. It will be the thing to watch, well other than the CT and Pet scans, to see how well the chemo is working. Dr. Dial said we should hope for a 5 in the end. I am going to have to research to learn more about it.<br />
<br />
Dr. Boatright has Aspergers. Well, we actually don't really know, but he acts just like Tyler. He is frustrating. We ask questions differently and he doesn't repeat. You know how you hear something, especially in this particular instance, and you will restate the question asking again. He answered, "You know everything. There are no secrets." Well, I personally agree with Susan that we need a second opinion. She wants to pay for mom to go to MD Anderson for a consult.<br />
<br />
Dr. Denby, the GI who did the colonoscopy attempt, prayed with us when he told us she had cancer. God has really given us wonderful doctors here. (I'm holding opinion on Boatright just yet.) Dr. Dial is the best in the biz, and the only dr from Tallahassee to Mobile that does the colon resection and liver resection in the same surgery. Plus, he went ahead in the same surgery and inserted the mediport in her subclavian artery that will be used for the chemo, which is usually done in a separate surgery!<br />
<br />
The nurses are fantastic! Very nice! Helpful and caring. I am so thankful that God led us here. <br />
<br />
I have heard enough from the drs, nurses, and Paul Dangerfiled, the anesthesiologist, here that it is possible that there were no symptoms until just recently. I am over the fact that Mom ignored needing a Colonoscopy in March. If she had it then, we will still be in the same situation. The cancer is so expansive in the liver that she has had this for over a year. Based on the amount of blood lost, she has had it over a year. I completely forgive her for not going to the dr or having the colonoscopy in March.<br />
<br />
My hypothesis is that the original infection she had 12-13 years ago resulted in this. Damaged cells remained. There is too much coincidence in the uterus infection and the sigmoid and pelvic wall masses. It is the same proximity.<br />
<br />
<b>Things I have to get over:</b><br />
(1)Dr. Davis not doing a proper palp exam (feeling of her abdomen) at some point. When I have not been to Dr. Crowe in a while, he always makes me get on the table for him to do a standard physical! I don't have to ask. He looks at the chart and does it. 3 weeks ago when mama had that case of "diverticulitis", according to Davis, he couldn't have done an exam. He may have, as Mama swears he did, but he couldn't have done it properly! She had hepatomegaly (enlarged liver) on Monday. It couldn't have gotten that large, which was because of tumors, that quick! In my eyes, he failed to do his job. Period. Maybe she would have had cancer anyway, but he could have at least done his job and examined her!<br />
(2)Mamas will to live. What there is of it. Whe has good attitude and good spirits, but I wonder how much suicidal thought there is underneath it all. With this diagnosis and the prognosis of 6mo to 2 years given to her yesterday, what is the reaction she had? Well, when I told her they said that, she said, "Well, I feel fine!" Of course that is pre-surgery. What bothers me more is the "I still want to work" attitude. I want to be aggressive with the chemo. She wants to be able to work.<br />
<br />
Priorities...again.Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-72722770586583295102010-08-19T06:43:00.000-07:002010-08-19T06:43:15.221-07:00I forgot!!I almost forgot!! You have lost weight too! Based on the information at the doctor, you have lost 20 pounds since March. Its weird. I didn't think I was that heavy in March, but apparently so.<br />
<br />
The point is that now I am BELOW the weight that I was when I was admitted to UAB!!!<br />
In 20 more pounds, I will be what I was when Megan was born!<br />
In 45 pounds, I will be PERFECT!<br />
<br />
The whole process is just watching portions, making better choices at times when I can, not depriving myself of anything, and definitely NOT DIETING!! It really hasn't been that hard.<br />
<br />
Main keys:<br />
<ol><li>limiting sugar makes me feel less hungry in general.</li>
<li>eating one chip will start a craving that last for several days.</li>
<li>Yogurt is a great "sweet" treat at ngiht.</li>
<li>Eat what you are craving...if you dont then you will eat a ton of other things until you get the ONE you want! </li>
</ol>Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-39798620621353725472010-08-19T06:32:00.000-07:002010-08-19T06:32:50.737-07:00Im still hereIt has been a while since I posted. School has started. Megan is in 10th grade and is so excited about turning 15! I remember those days. Sydney is in 5th grade and loves school. Her history class is a lot of work. Mrs. Ennis was tough in choral, why do I think she would be any different as a history teacher. Syd is also taking Cheernastics with Juddi Jones and LOVES it.<br />
<br />
I participated in a tag swap this week with pinkscrapper99.blogspot.com using distressed techniques. The tag looked beautiful! I am so proud of it. I gave Mema a copy of it, plus I have some left over, so I will give Mama one too and still have one to keep!<br />
<br />
Mema had another stroke over a week ago and is still on a walker. She is good except she doesn't have feeling in her foot. She will be getting it back, so the drs say. I sat with her yesterday.<br />
<br />
Andy's mom died July 2nd. It was a tough time for the family. Megan took it very hard. Syd was touched too. Funny thing is there was a Bible that she had, where she had written prayers for the members of her family over the years. A lot were about Chris, which really proves prayers will be answered! She also had prayers about us not keeping MEgan from her. You know, it took her death for me to actually see just how much she loved us all. I was so offended when she threatened to get Megan, but now I can see it was desperate plea just to be able to see her. Her death affected Andy, but as usual, he is very quiet with his emotions.<br />
<br />
He did cry, especially when we told Syndey Grace. Syd was gone out of town with Mama and Daddy somewhere. So that night when she came home, we had to tell her. I will never forget how she ran to his arms and told him she was "so sorry for his loss". I cried myself. She is such a sweet child. Of course, Megan is too. She has continued to try to talk to Andy about his feelings on the subject. It frustrates her that Andy is so closed off.<br />
<br />
The plaque for the burial plot is done now. We need to get some flowers for it.<br />
<br />
Her death also opened the door for me to talk with Mama and Daddy about their wishes. Daddy was very frank and said that cremation would be fine with him. Mama agreed, sort of. Of course, I made it perfectly clear that I want my body donated for research. Andy won't talk about it. The girls don't want open caskets, which wouldn't have happened anyway!<br />
<br />
That brings up a point about funerals and caskets. I don't look. As a rule. I prefer to see the person in my memories as he or she was in life. Not the plastic made up model. So what I do is avoid the casket "viewing" area. With Gloria, however, I had no choice given the situation at the time. I am actually glad that I looked. the last time I saw her was on the Tuesday at lunch before she went to the hospital that night, then died on Friday. She looked so much better in the casket. Almost normal again. It had been a couple of years since she has looked that good! That was once that I am glad I looked.<br />
<br />
Andy is still concerned about taking Zocor since her death. The drs said it was the diabetes, zocor, and recent heart surgery that caused her congestive heart failure. When Zocor was mentioned, Andy and Gary both focused on it. Andy goes to Dr Crowe tomorrow to talk to him about it, his stomach probs, and hopefully his turning red-ish-purple in times of "stress". Hopefully I will be back to update about all taht.<br />
<br />
I have a UTI and yeast infection. That explains the time on the computer today. I feel like crap with all the meds and the sickness.<br />
<br />
It's like Andy said the other day... "If we had more money, life would be perfect"!!Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-47569837377454841592010-05-19T18:43:00.000-07:002010-05-19T18:43:49.120-07:00Another Day Another NickelYou LOVE The Big Bang Theory! Andy is watching it right now, and you hear him laughing. It reminds you of the fun and laughs you had together when you were dating.<br />
<br />
On to business.<br />
<br />
Grandmother Ona had her surgery for parathyroid removal today. It went well. She is the most HATEFUL person on the face of the earth! She told Megan that she had GAINED WEIGHT! Of all people....Megan!!! With as much as we are going through with her! She struggles with self image on a good day!<br />
<br />
Take it easy on yourself. Focus on calorie reduction and healthy eating!Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-15645071504708754822010-05-18T18:10:00.000-07:002010-05-18T18:10:00.569-07:00Day 1<b></b><br />
<b>Today you realized two things: </b><br />
<ul><li>the heat is what is making you feel so fatigued (it is not depression)</li>
<li>your desire to create is being impeded by the chaos in your craft room.</li>
</ul><b> You need to remember:</b><br />
<ul><li>When the temperature outside begins to be 90 degrees or more, you will start to feel so bad that you will either think you are having a flare up because you are "coming down with something" or that you are in a depression. You are NOT. </li>
<li>When the weather does begin to get hotter, and you are starting to notice the effects, take measures to combat it: </li>
<ul><li>Wear your cooling vest when outside.</li>
<li>Stay in A/C as much as possible.</li>
<li>Take a break more often to drink a cold drink.</li>
<li>Remind yourself that even though you don't feel as well and can't do as much, you are still doing fine!</li>
</ul></ul><b>Notes:</b><br />
<ul><li> You put your bulletin boards that you made by painting on ceiling tiles in Southern Style today. Savanna loved them! Be very proud of yourself. You have talent, even if you don't want to admit it.</li>
<li>You sold two dance canvases that you made by stapling tulle at the bottom of pink tinted canvases and adding ribbon straps hanging on a hanger. You sold these two canvases the week of the Andalusia Ballet recital. This was good because there were only three days that people had to shop for your canvases. You should expect to sell many more for the Opp recital. Savanna loves these too! </li>
</ul><b>To Do:</b><br />
<ol><li>URGENT: Make Style Tags for Bulletin Boards at Savannas </li>
<li>Make 8x10 dance canvases</li>
<li>URGENT: Clean craft room</li>
<li>Check Clearance Rack for SU</li>
<li>Organize craft room boxes--see previous post for today</li>
<li>Cook supper tomorrow</li>
<li>Get paperwork ready to go to bank for loan</li>
</ol><b>Sydney</b>:<br />
Tumbling tonight. She wrote Justin Beiber a fan letter. She is so cute. She told him he "rocks like crazy"!<br />
<b>Megan</b>:<br />
She has so much homework right now because finals are coming. She has to turn in her shadowing program application tomorrow.<br />
<b>Andy:</b><br />
The top closet rod fell off the wall today on his side of the closet! Hilarious!! But tons of work. The girls and I thought it was a prowler, and I went to investigate with a small fork in hand!! There has been trouble at work with attitude, but that has been all resolved. Basically, Andy was patted on the back and commended for having a good attitude for the company. It will pay off in the long run.Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-25923787891687097622010-05-18T16:39:00.000-07:002010-05-18T16:40:26.571-07:00Feng Shui in a Craft RoomYou watched one of Marion's videos (apieceofcraftdotcom on YouTube), and it was one of her and her husband. Garrett was saying that having disorganization, even if it is enclosed in a box or basket, causes your feng shui(sp?) to be off, which causes your creativity and inspiration to be blocked. <b>Believe it! </b><br />
<br />
While you were sick recently, when you would get something or go in to make a card real quick, you would leave the mess out because you didn't feel like cleaning up. Also, before you got sick you had been doing a huge creation of stock for the store of my items, and that left the new Tim Holtz stuff, your Big Shot stuff (which is still not organized to your satisfaction), all the stamps and things you used for the happy bday cards for Mama, and the paints and things that you had been using all out too! So the area is a mess that needs to be cleaned up, and there is a lot of new things that need a home. TH stuff is now in a box, but it is not organized, but where to put it. The chipboard box, which has cut chipboard pieces from packaging, coasters, etc. in it is in such chaos, it is hard to be motivated to do a mini---that you are dying to do--because you will have to deal with that stuff in that box! Oh, and you have a new (old) bookshelf that needs painting--it is bumblebee yellow leftover from the old elementary school, which you bought from the neighbor for $20-- and you need to get all my children's bookmaking things on that shelf too.<br />
<br />
So after watching the video, you know for a fact that you are sort of avoiding the area because of the chaos within, even though when it is cleaned up there is no visible chaos. The new bookshelf will help a LOT. But there is a huge need to take some of those "chaos in a box" boxes and organize them more neatly. It will really help your "aura". <br />
LOL--- No, you are not some new age hippie or anything, but what Garrett (Marion's husband from the video) said really made sense!! Her room is so neat/oragnized, and you love that she has a small sofa and table for sitting and reading, etc. You would probably spend a ton of time in your room if you had a seating area...<br />
Maybe your next plan should be to rearrange and add that red comfy chair!Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0tag:blogger.com,1999:blog-4948813504965380989.post-22730194162637714842010-05-18T16:08:00.000-07:002010-05-18T16:08:31.337-07:00DefinitionThis blog is written to myself.<br />
<br />
The reason I am taking this approach to blogging is because I have memory problems brought upon by the MS (Multiple Sclerosis). I considered how much my memory had been affected in the past 4.5 years and decided that I needed to do some things to prevent the loss. Well, actually I have always been very active in working to keep my memories and to build my memory-retention-ability. Another reason I am addressing this blog to me is to provide myself a place to make note of memories and things I need to remember.<br />
<br />
Mnay people with cognitive problems and diseases that affect memories are encouraged to keep a journal. It occurred to me that I have never been good at keeping a journal, so journaling won't be a good outlet for me. But blogging, which basically a journal that the world can access, is the perfect set up. I get on the computer every evening, so I can take a few minutes to blog about my day, memories that randomly pop into my mind from the past, or other things that are important to note.<br />
<br />
If you are visiting this blog, you are hereby invited into the ramblings and wanderings of a progressively dissolving mind. Unlike Alzheimer's, Multiple Sclerosis has treatments to prevent the rapid decline of mental acuity. However, in noting where I was 5 years ago--in graduate school at the top of my class in all aspects and teaching topics I would thoroughly research and retain-- I have decided that if the descent that I appear to be traveling on continues at the same decline rate, another 5 years will show even more memory-retention-ability loss.<br />
<br />
So without further ado... <span style="font-size: large;">And so are the Days of Our Lives...</span>Lesliehttp://www.blogger.com/profile/03783177208745193154noreply@blogger.com0