Too Darn Hot

"According to the latest Report
Ev'ry average girl you know
Much prefers her lovely doggie to court
When the temperature is low,
But when the thermometer goes 'way up
And the weather is sizzling hot,
Mister Adam
For his madam.
Is not,
'Cause it's too, too
Too darn hot,
It's too darn hot,
It's too darn hot."

---from "Kiss Me, Kate"




The past week or so, it's just been TOO DARN HOT!!!!!

But Monday was the absolute worst...according to one station, it was over 100 degrees. So I, not wanting to end up in the hospital if I could possibly avoid it, decided to do something about it.

I'll back up for a moment and say: I've been feeling very, very sick lately. And an unexpected heat-wave that started last week was NOT helping matters at all. A few days ago, I was actually trapped on my stairs for half an hour, unable to get up and walk down or up. I couldn't keep even liquids down, and the pain in my face was unbearable. Saturday was awful, and Sunday was even worse. I watched the Weather Channel on Saturday night, horrified by the prediction of a 103-degree Monday.

Now, I do have air conditioners, but this is an old house. Even with air conditioners and fans, there's no way I could combat a 103-degree day.

That's when I decided to take the advice of some of my fellow MS-ers from my support group: I booked a hotel room for the day.

Check-in was 4PM, but after explaining the situation to the front desk clerk, they graciously allowed us to check in at 1:00, thereby avoiding the worst of the heat. Jonathan went to the room ahead of us, and turned the air conditioner on full-blast. I packed an overnight back for all of us, and headed out to brave the heat.

It was so hot, even at just a little past noon, that I could feel the heat in waves, crushing me. I nearly fell over, and had to be helped into the car. Stunned, all I could say was, "It's so HOT!"

By the time we arrived at the hotel, the room was nice and icy-cool. The kids looked upon it as an adventure, and looked forward to the promise of swimming in the hotel's pool the next morning before check-out. The room we procured was on the second floor, but right next to the elevator. It was also right next to the vending machines. A perfect room for someone with MS.

Jonathan had to work for a few hours that evening, so the kids and I settled in and made the most of it. We watched kids' shows on the TV. We ate vending-machine cookies and drank Sierra Mists, putting extras in the nice-sized fridge provided in the room. At dinner time, I ordered from a pizzeria we'd never eaten from before...and we were pleasantly surprised. The pizza and breadsticks were delicious, and the Ceasar salad I ordered for Jonathan to eat when he returned was surprisingly large for the small price. I am disappointed that there isn't one closer to our home, that we could order delivery from more often.

To wind down the evening, Wren played her Game Boy while Phoenix read the first few chapters of Terry Brooks' "The Elfstones of Shannara," and Eden played on the floor in front of an episode of SpongeBob. I myself brought along my well-read and much-loved copy of Carole Nelson Douglas' "Six of Swords." I pulled a chair up in front of the air conditioner and just enjoyed myself, feeling closer to "normal" than I have in weeks.

It wasn't total bliss, however. When it came time for sleeping (and my much-anticipated Monday viewing of "Hell's Kitchen"; I am a big Gordon Ramsey fan), Eden decided to rebel in a BIG way. At first, she just jumped on the bed she was sharing with her sister. Then she began to throw a huge temper tantrum, screaming and kicking for a good 45 minutes, making me appreciate another quality to that particular room: no neighbor was booked on one side, and the elevator was on the other. She may have been loud, but thankfully, we were the only people who knew it.

No sooner did Eden and Wren finally fall asleep, than did Phoenix had a problem. He'd brought along his sleeping bag, intending to sleep on the floor...but it was too uncomfortable. He tried, the poor thing, but it couldn't be done. I then saw that the girls were only taking up maybe a third of the bed they were in, so Phoenix jumped in and slept at their feet. It was adorable.

When Jonathan returned, we watched TV and ate salads, completely comfortable in the cool room....which, by that time, was far cooler than our house has ever been. He went to sleep easily...sadly, I was not so lucky. The pain I've been struggling with would not let go of me, even in this much-cooler environment. So I stayed up all night, as I have pretty much every night for the past two weeks. Hot damn, am I tired...

The next morning we partook of the free continental breakfast...which was very nice: English muffins, banana-nut muffins, Cheerios for the girls, and fresh fruit.

Shortly afterwards, we hit the pool. My plan had been to go out there with Jonathan and the kids, and if Eden threw a fit, to take her back to the room. I had no plans to be out there for more than a few minutes or to get into the pool...but I discovered yet another bonus to this hotel: early in the morning, half of the pool is completely in the shade! The water was icy cold. I actually got into the pool, the first time I've been able to swim out of doors in probably 7 or 8 years. As for Eden, she LOVED swimming! Completely fearless, that one. She tried to worm out of Jonathan's arms and take off on her own! She didn't want to get out of the pool, but it was time to change clothes and check-out.

I waited in the lobby while Jonathan went to the car and got the air-conditioning going. It was just starting to heat up outside when we left, but it only got to maybe 85 on Tuesday...a big difference from Monday, and absolutely workable in our old house.

I don't know why I was so resistant to this idea for so long. All last summer, people in my support group would tell me about going to a hotel on hotter days, and how much of a difference a day out of the house made. It was such a small thing, and yet, it DID make a huge difference. I felt so much better leaving than I did going in.

I learned a few things from this experience: one, it's not necessary for me to sweat and suffer on very hot days. The hotel we stayed at was very nice and relatively inexpensive...and certainly, VERY inexpensive when compared to the alternative: three days in the hospital for steroids. I need to work on this guilt I have about "wasting" money like that. I always feel guilty if we spend money on me, because we already have to spend so MUCH money on me, that spending any more just bothers me. Jonathan is forever telling me to get over it, and now I know it's in my best interests to listen to him on this.

I also learned what I needed to bring next time, for there will be a next time (we've decided that any day that is over a certain degree will be a Hotel Day). I needed to bring better food and drinks for me and the kids, now that I know there is a fridge there. That's not to say I won't let them indulge in the candy machine; that's part of the fun. I'm also looking into a local delivery service that delivers food from various restaurants to hotels and the like. The idea of being in the hotel and munching on some good Chinese food appeals to me. I also need to bring more toys and so on for the kids, as they did get a little bored. I'm also looking into cooling clothing, because I didn't really realize how staying in the house all the time because of the heat was making me so depressed. A swimsuit for myself will also be in my bag next time (wearing a wet bra is no fun). I really loved swimming; I felt so much lighter in the water, and it was so much easier to move. And finally, we will definately bring some water-wings and swim toys next time! Especially for Fearless Eden.

I guess the lesson in this little experiment was this: it's ok to do things like this for myself. It makes me healthier and everyone in the family happier. It's a win-win situation.

Heat be damned, I WILL NOT be trapped in my house this summer! I will go to hotels. I will swim. I will buy cooling clothing and enjoy myself. And I will NOT feel guilty about it.

Every cloud has a silver lining, they say. I'm learning now that every sunbeam has one, too....

Nutbag Extraordinaire: Ann Coulter

I have never much been a fan of uber-conservative bitch Ann Coulter. But now, she's gone waaaaaaaaayyyyyy over the line. So over the line, she can't see it from where she's standing, gloating and ensuring her place in the Nutbag Hall of Shame.



Ann Coulter Attacks 9-11 Widows


No one is much surprised that outspoken conservative columnist Ann Coulter attacks environmentalists and Bill Clinton in her new book, "Godless: The Church of Liberalism."

But Coulter has raised eyebrows by taking aim at a different target: The widows of 9/11 victims.

Calling them "broads" who are "enjoying" their husbands' deaths, Coulter made her attack on the widows public yesterday, through the publication of the book and during a raucous appearance on NBC's "The Today Show."

"I was shocked that she was focusing on us," said Lorie Van Auken of East Brunswick, who lost her husband, Kenneth, on 9/11, and who was personally attacked in Coulter's book.

Much of Coulter's television interview consisted of the show's host, Matt Lauer, reading portions of the book aloud, including this passage about the 9/11 widows:

"These broads are millionaires, lionized on TV and in articles about them, reveling in their status as celebrities and stalked by grief-arazzis. I have never seen people enjoying their husbands' death so much."

**********

I don't know if this was a poorly-advised publicity stunt in order to sell more books, or if this woman just has a heart of pure, black coal. Either way, she should be (but is clearly not) ashamed.

Well, I finally did it....

After almost 32 years of dealing with an alcoholic, self-absorbed, abusive father...I have finally done it. I have broken off all contact with him.

I feel relieved, in a way. And very, very sad. But the Good Lord knows, I have tried. I've tried for years, for my kids if for nothing else. But he's even a bad grandfather at this point...and after he forgot my kids' birthdays AGAIN, I stopped talking to him.

And then, came the day before yesterday, when the straw that broke this camel's back finally occured.

My dad and my former stepmonster are back together.

I told my father, last year when he came to visit me, that if the two of them EVER got back together, I was done. Finito. End of story. I would not, will not, cannot have that evil woman back in my life.

And how did I find out about all this? She emailed me.

Here's the first email, and my response. Emails have been X'd out, and names have been reduced to initials. Stepmonster is referred to, of course, as Stepmonster:

In a message dated 6/12/2006 4:03:01 A.M. Pacific Standard Time, XXXX writes:

Dear Angel, I bet you do not know who is really sending you this message.
Your dad is fine and T and him are divorced. Your father is now back in
L and my life, he is back in Ohio with F. I have never really
gotten over the whole situation with your dad but have never stopped loving
him, life is too short and none of us is getting any younger. I hope that
this news does make you happy and that you and your dad can resolve your
differences.If you want youcan call us at XXXX Love Stepmonster


The fact that he didn't call, send a card or anything for my kids' birthdays doesn't exactly lend well to resolving any "differences." Wren's birthday was on Tuesday, you know. And Phoenix's 13th was last month.

If you two are happy, by all means, be happy. But I am not going to let him do to Phoenix and Serenity and Eden what he did to me for years growing up....and trust me, Phoenix definitely knew his Papaw didn't notice his birthday for the second year in a row. I should not have to console my kids because their grandfather is too wrapped up in women, drinking and bullshit to remember they exist. I am tired of making excuses for him. I can handle him treating me that way, he has most of my life anyway (did he tell you, by any chance, that our "differences" started because he got married TWICE and didn't ever bother to tell his oldest child?). But he is NOT doing this to my kids. If he has problems with me, take it out on ME. Don't ignore my kids and treat them as if they don't fucking exist, either.

Give L a kiss for me. Perhaps she will be happy to hear from me, as I get the feeling neither of you will be.

Angel


To be honest, I thought that email would put her off. I thought it would get the point across that I am ANGRY and don't want to talk.

It didn't.

The second email, and my response:

In a message dated 6/13/2006 6:21:20 P.M. Pacific Standard Time, XXXX writes:

Angel, I do not know any of the details between you and your father, as far
as I am concerned, I am glad to hear from you. When your father divorced me
all of you kids acted as if I never existed. I never did anything to any of
you and always tried to be there for you. I don't think that you have any
reason to be angry with me. I am sorry he does not remember your kids
birthdays, but I always was the one when you were growing up that remembered
them Please do not take out on me what he has done to you in the past. I had
gone on and started my life with just L and I when he contacted me. I
know that you cannot help who you love and I have never stopped loving your
father.He really hurt me in the past and it is something I may never get
over. I think that I was always good to you and the rest of the kids. If you
do not want to keep in touch with him that is up to you. If you want to
write to me, my email is XXXX. Your father never knew that
I was emailing you until after I did. L is doing fine and so am I. I
bought a house and a new van after the divorce. If I did anything to offend
you please let me know what it was . Love to all of you. Stepmonster



You have got to be kidding me. Do you honestly believe any of this bullshit you just wrote?

I didn't "pretend you never existed" after the divorce, Stepmonster. If you will kindly remember back, you and I continued to email and IM for MONTHS afterwards. Mostly, it was you bashing my dad, remember? Don't bother to deny it; I saved most of them. I stopped being friendly when you called in a false alarm, telling me my grandfather was in the hospital and on "death's door," and I should get on a plane right away. When I found out it was a LIE, I told you never to call me again, and changed my phone number to ensure you didn't call me. I guess you forgot about that, huh? Most convienant.

You "never did anything to me"? You were "good to us kids"? Good Lord, what is the color of the sky in your world? You were as shitty to us as you could possibly be when I was growing up. I remember very vividly my 15th birthday, do you? Probably not, as you didn't remember it when it happened. When you guys finally came around to remembering it, I was told to shut up because YOU were upset over J and couldn't be expected to remember anything as trivial as my birthday. YOU were upset? How the fuck do you think I felt? You wouldn't know, as you never once bothered to try to find out. You were too busy making us feel like utter shit because your kid is a fucking deviant. I remember the little "game" you used to play with M and R and me (and trust me, they remember it, too). You remember, don't you? When you used to pretend to be our "friend," so we would give you "secrets" you could then immediately run to Dad and sit there with that snarky fucking looking on your face while we got beat for it. Yeah, loads of fun....for YOU. I remember having to sleep in a fetid bedroom, with no sheets or pillows, dog shit all over the room stinking to high heaven. I also distinctly remember that your kids' rooms weren't a thing like that. Yet every week, when we'd show up...the room was like a third world fucking country. I remember needing braces, but did I get them? No, S had to have a fucking car. Now I have no teeth, so thanks a lot. Do you remember when I got beat for refusing to call you "Mama Jean"? I do. How about all the stuff you stole from the house when Dad left you, stuff that had belonged to people I loved and cared about, people M and R and RJ loved and cared about? In your zeal to punish Dad, you could not have cared less about us. I also remember, whether you want to or not, the incredibly shitty way you treated my mother for years and years. And then there was the despicable way you behaved at my mother's wake. Did you even realize that EVERYONE there was talking behind your back about what a disgusting person you are?

But you know what you did to me that's really stood out in the last day since I got your first email? The time you told my sister, either not knowing that I could hear you or not caring, that you didn't believe all the things J.D. had done to me because "I kept going back." Well, aren't you the little fucking hypocrite. Dad beat you, beat on your kids, cheated on you left and right and left you for an Internet whore...and YOU TOOK HIM BACK!

Those are only a few instances, Stepmonster. If you think you were "nice" to us growing up, I'd hate to see what you being "mean" would have been. There's a reason us kids refer to you as "the stepmonster."

As for my kids' birthdays, it is sorry and pitiful that the two of you actually think there is ANY excuse for doing that to a child. He is a grown man who should be able to remember, or at least write the fuck down, the birthday of his oldest grandchild. He doesn't do it, because he doesn't care. Last year, I even emailed him and REMINDED him of their birthdays. He STILL forgot them, so wound up in his own bullshit that nothing else mattered. Did he even tell you I have another child? You wouldn't know it from his end...he forgot her first and second birthdays.

You are a complete fool. You think Dad called you because he loves you and misses you? Give me a break. He knew you wanted him back for YEARS. We talked about it, on our visits. He LAUGHED about it. You were the butt of his joke. The only good thing he had to say about you was that you were good in the sack. He also said he'd never take you back, but I guess he's a fucking hypocrite, too. And you, you're just too blind to see that he took you back not because of this undying love (had he loved you, he never would have left you for another woman...which anyone with half a brain could figure out), but because he lost the latest Internet whore and God knows, Dad can't be expected to wash his own clothes or take off his own boots or any of the other million meaningless chores he expects his wife, or slave, to do for him. You've got a new house and van, huh? You think THAT didn't figure into Dad's plans at all? You must be blind. Of course, he'll tell you that none of this is true....and you'll believe it, as you always did. That's what makes you a fool, Stepmonster.

If he hurt you in the past, well, join the club. He hurts everyone. That's what he does. You're a fool, because you KNOW it, and you're going back anyway. You deserve what you get from here on out. Just as you thought I deserved what I got. Karma sucks, doesn't it?

I'm sure most of everyone else is kissing your ass right now, talking about how "happy" they are that the "family" is back together. And you're doing double-time, ingratiating yourself to the extended family and telling, in that loud booming voice, everyone about how you never stopped loving him and blah blah blah. What's hilarious is that you think anyone actually believes it.

Well, I'm done kissing your ass, and his ass. I'm in bad shape. I live, daily, in more pain than you or Dad could possibly imagine. Dad does not give a rat's ass. And neither do you, so spare me any such stepmotherly declarations. You want to talk about life being too fucking short? Life is too short to put up with the two of you. You, in particular, have caused me nothing but pain and grief. These past six years of you being gone were wonderful. And I'm not going back to a life of (Stepmonster's maiden name) bullshit. If dad wants it, have at it. I don't. There's a reason I moved 2500 miles away from you people. It's a pity you idiots haven't figured out what that reason is yet.

Don't email me again. I assure you, I will just delete them, so it's wasted effort. As you said, life's too short...and I am not interested in playing family with you. I have a real family who actually cares about me, and loves me, without games and drama and endless amounts of bullshit. Leave me to them.

Angel


I have not heard back, so I suppose the message finally got through.

I couldn't believe it when she emailed me the second time. This horrid, abusive, disgusting woman, who made my childhood a nightmare, having the nerve to tell me she "loves" me and "was always good to" me? This is the same woman who, after I (and four other young girls) was sexually assaulted by her son, called me a liar and a sniveling brat. This is the same woman who once gave me permission to go on a date, knowing full well my father had told her no, not yes, and then locked the door so I couldn't get back in. My father tried to choke me, and I had to leave home, running, with no shoes and no money. But she was "always there for me"? Is she purely evil, or just plain stupid? I think it might be a little of both.

My husband has been begging me to cut off contact for years. He hates them all, for making me sick from the amount of stress they pile up on me. Never once, do any of them call to ask how I am feeling or doing. Never once, do I hear from any of them when I've been in the hospital. But my father threw a HUGE hissy fit when I didn't call him following the death of Dale Earnhardt...a man he never knew!

It's taken me years to realize it, but they really do only cause me pain and grief. They so clearly, patently, don't care about me or my kids at all. And do I really want my kids around these people, these abusive drunks? NO!

I just can't go back to having that woman in my life, after being rid of her for so many years...wonderful years, glorious years. That woman, she lives for drama and head games. When bored, she creates it, and enjoys it. And sadly, she is often bored.

And what about my dad? He forgets my kids' birthdays. He never calls me, never checks to see how I am doing. He could not care less about my MS. When I told him when I first got the DX, his attitude was "so what?" I asked him to tell other members of the family, so I would not have to...but months later, when I came to visit, I found out that he had told NO ONE. When I told him it looked like my MS was going progressive, and it was upsetting me, he said, "What did you expect? You knew it could happen. No use bellyaching over it." Gee, way to be supportive, Dad.

When my grandfather died almost 13 years ago, he asked me to try to get along with my dad. I tried, Papaw. I really, really did. I swallowed my pride on so many occassions, I have long since lost count. I have put up with so much more than any one person should ever have to. And now? I am just too damned sick to do this anymore.

And I am too damned sick for it. I can't have this kind of stress. I need to be surrounded by people who love and respect and care for me. I can't have toxic people in my life. It's literally a matter of my health, and my sanity. I have to weed out the people who do not care for me, who only bring pain and stress and heartache into my life. And the top of that list: Dad and Stepmonster.

They made my childhood a living hell. I won't let them do it to my kids, and I won't let them continue to do it to me.

I tried. I tried to get along with him. But it can't be done.

So I won't try anymore. I don't have it in me now. And you know what? I shouldn't have to choose between my father and my health. But I do, and it's really no contest. I'm not getting sicker because he's an abusive drunk. I'm not getting sicker because he went back to the Harpy from Hell. I'm not getting sicker because he cares far more about himself than he ever did care about me.

I feel like a huge weight has been lifted from my very soul. The past is now in the past...and my present and future are about my REAL family. The people who actually do love and respect me.

If I could say anything to my father right now, and I know I can never have that opportunity, for he would never listen...this is what I would say:

Dad,

I love you. But you just don't get it. I am really sick. It's not a game, or something I can ignore. I have to take care of myself, and I can't let you keep making me sicker. I can't let you keep making me cry, or not sleep because I am worried about you ending up in prison or a ditch or worse. I can't be the only one who keeps trying at this relationship. I know you, for some reason, think that's the way it should be, that I should do all the work and I should have to simply "live with" or "deal with" whatever you throw my way. But, Dad, I'm not a kid anymore. I don't have to live with it, or deal with it. And all the things you've done to me? I don't have to "get over it," either. I can walk away. I didn't want to, but you've left me with no choice. I can't go through all this with you again, and with her. I can't live that way anymore. It's literally toxic for me. And I won't let my kids grow up the way I did, with your toxic presence and her toxic presence. They should never have to know that kind of pain, the kind that was with me all my life. And you can yell about how I am "disrespectful," or "living in the past," or any of a million different things, but it's not even close to the truth. And you can insist that I "don't want you to be happy," but that's not true, either. I do want you to be happy. You have a right to be happy. But you know what? So do I. So you go and be happy with her in Ohio. I'm going to go and be happy here in Oregon. This is where it ends, Dad. You've never wanted to be my father, and I've never wanted to be your daughter...this is where all the pretending otherwise ends. Maybe we'll both be happier this way, who knows. I hope so.

Goodbye.

Love,
Angel

My Life With Secondary-Progressive MS: Sick and Tired....

....of being sick and tired.

As usual, summer has hit and I am struck by the MonSter. It is different this time, though. I didn't think it would be. I thought when my MS morphed to secondary-progressive it basically meant no more relapses and a steady progression of the disease. I didn't realize how much worse it was going to be. The lack of information on this is very depressing. There's a plethora of websites, books and other resources on R&R MS. But for SP? I'm finding very little. Literally, a paragraph or two. There's GOT to be more to it than that...and I think I'm beginning to realize that there IS more to it than that.

I am so very, very tired. The kind of tired where your muscles ache and burn and you can feel it in your bones. It reminds me of the time when I, in a moment of pure madness, decided to walk the bike trail from Xenia to Yellow Springs in Ohio. All while pushing my son in his baby stroller! When I finally got to the cafe, I felt like I had been walking for years. And that's what this feels like: like I've been walking for years. Like I walked from Xenia to Yellow Springs again, just this morning.

On top of being tired, I am also struck with weakness. My legs wobble when I walk. They shake, visibly. The entire leg, not just the calf like I am used to, but all the way up to my thigh. I feel like I'm auditioning for an Elvis tribute band every time I try to walk down the stairs. And walking up the stairs? It's taking forever. I feel as if I am literally pulling myself up by the banister. I find myself avoiding the stairs whenever possible. When I DO climb up the stairs, it takes several minutes for me to feel "normal" again. Climbing the stairs in your own home should not be this taxing on a person's strength...and yet, it is.

The weakness in my legs is also making it very hard to walk in general. The canes I bought for "occassional use" two years ago have now become everyday necessities. I can't even recall the last time I left the house without one. I can barely walk IN the house without one, most days.

The weakness isn't just in my legs, either. My arms, my hands, are also affected. Signing my name has suddenly become a Herculean test of strength. Brushing my hair makes my arms burn as if I've been practicing for a weight-lifting contest instead of just trying to make my hair look like it isn't the result of my putting a wet finger in a light socket. I no longer trust myself to carry hot food from the kitchen to the table (especially after the infamous Chicken Soup Burn Incident). I drop things constantly, and when I visit my goddaughter, I prefer to be seated when holding her. I've never dropped a baby in my life...and I'd like to keep it that way.

I am also finding that minor problems I have had for years are becoming major problems. I'm in the bathroom constantly (I've yet to respond well to a medication to control that). My muscle spasms have gotten so much worse that I've gone from taking one Baclofen a day (as I have for at least four years now) to taking three or four. The nerve pain and sensations are so much worse; the worst they've been since my awful trial on Neurontin (a long story for another day). Trying to fall asleep at night has become a little bit like waging war on my own body: will the pins-and-needles stop? Will the nerve sensations go away? Will my muscles start spasming as soon as I finally drift off to sleep? How many times will I wake up in pain, or needing to go to the bathroom...so I can do the whole rigamorale over again?

This is not like the R&R MS. It's like R&R MS, intensified.

All in all, I feel very much like an invalid lately...and that's something I am not used to. I am sleeping more and getting less out of it. The slightest bit of excertion leaving me in pain and reeling from fatigue.

I just have to wonder: am I feeling like this because it's summer and the MS is spanking me like a bitch, or am I feeling like this because this is what secondary-progressive feels like?

I wish I knew. I keep looking for the answers, and no one will tell me. The lack of information on secondary-progressive MS is astonishing. When I do a websearch, I get plenty of definitions on what it IS, but no real, useful information as to what I can expect or how to cope with it. Each site just keeps regurgitating the same story over and over: the percentage of people who get it, and it's a "progression with less or no relapses." Yeah, I get that. But what does that MEAN in my day-to-day life? On most sites, the only mention of it at all is in a breakdown of the various forms of multiple sclerosis. I know all of that already...what I don't know is: is how I am feeling normal? Is this what I need to expect? How do I know when it ISN'T normal? I keep hearing about going to the hospital for steriod treatments when it "gets too bad." Well, how do I know when it's "too bad"? What are the signs of needing to go into the hospital? What happens if I should have already gone, but I didn't know?

Let's take this one MS site, for example. This is the extent of the information they have on secondary-progressive MS:

Secondary-progressive MS
Without treatment, Secondary-progressive MS, formerly called chronic progressive MS, develops within 10 years in about 50% of people who have had relapsing-remitting MS.

Some people with secondary-progressive MS have relapses, but many do not. In time, people with this condition experience a gradual and continuous increase in symptoms and disability.

Fifteen years after being diagnosed with Secondary-progressive MS, some people may require walking aids, such as a cane, and others may need use of a wheelchair.


This is typical of the information on the Web concerning secondary-progressive MS. How exactly does this information help me? The first paragraph is just statistics, meaningless when you've already been diagnosed with SP. The second paragraph is too vague to be of much use. And the third? I was ALREADY walking with a cane when I was diagnosed with SP! What does that mean for me?

That's basically what I'm finding online, folks. Statistics and vague definitions. And the stastics change from site to site, rendering them pretty much useless.

And so I turn to my support groups. These are usually incredible fonts of information: first-hand accounts of what it feels like to have MS and what may or may not help. I have learned so much from my groups over the years; they have been truly invaluable.

But now I find, that like the Internet, they have little to offer me in the way of practical information and advice. The vast majority of people in the groups have R&R MS. In most of my groups, I am the only person with secondary-progressive. If there ARE others in the groups with SP, they are choosing to remain silent about it for whatever reason...I post and I post, asking for info, and getting nothing. I'm not ignored. People respond, but it's with "sorry, I don't have the answers, I wish I did."

It's frustrating. I feel like I am running in the dark. I don't know where I am going and I'm not sure what direction to run in.

People who don't have MS are now advising me, "Ask your doctor." They mean well, and I politely thank them for their input. But honestly, do they think I've never thought of that on my own? That I haven't tried just that? Doctors are more vague than that website! I get the same "each case is different, so it's hard to tell how yours will progress" lecture I've been getting since I had R&R MS. Occassionally, a doctor will direct me to an MS website...which, as we know, tells me little to nothing. Or they'll hand me a pamphlet, which has the same info the website has.

So what now? I plan to go to Powell's soon and look for books. Maybe someone's written about this form of the disease, and that will help me. I'm thinking that looking at online bookstores for possible titles and so on wouldn't hurt, either. I just refuse to believe that there isn't some practical information, somewhere. Depending on where you get your statistics, anywhere from 25 to 50 percent of people with R&R MS will get SP. Surely, SOMEONE has written about it?

I hope so, earnestly. I hate running in the dark.

Nutbag Parents: Another Dryer Disaster

Back in December, I brought you the story of a mother who killed her infant child in a clothes dryer. Sadly, this nutbag appears to have sparked a trend.


Toddler burnt when put in clothes dryer

Wednesday May 31 08:39 AEST

A 13-month-old Perth baby suffered horrific burns when she was put in a clothes dryer, police say.

The baby was left with her mother's boyfriend at a home in suburban Warwick while the woman went to a gym for about an hour last Thursday, police said.

The baby spilt liquid on herself and the man put her in the clothes dryer and turned it on, police said.

"The person we allege has done the act has stated that he has put the child into a clothes tumble dryer, closed the door and turned it on for a couple of minutes," Senior Detective Deb Newman said.

"The child had burns to both feet, to one of her hands, burns and bruising to her back and bruising to her forehead," she said. "The injuries are horrific. In my years of being a police officer I have not seen or heard of this type of injury before."

The mother returned home to find her daughter suffering serious burns but her boyfriend did not mention the dryer, she said.

Police investigated after the hospital where the baby was treated informed them the child's injuries were suspicious and highly unusual.

Snr Det Newman said the mother was distraught but the toddler should make a full recovery and be released from the burns unit at Princess Margaret Hospital for Children later this week.

Samuel Marc Barnes Siddall, 21, of suburban Beldon, appeared in Perth Magistrates' Court on Tuesday charged with causing bodily harm or danger.

He was granted bail on condition that he did not approach, or contact, the mother and child. He is due to appear in the Joondalup Magistrates' Court at a date to be set next month.
********

I think my original comments on the first such incident say it best: I cannot fathom the evil that resides in some people.

Pain Article: Pain Relief and Emergency Rooms

SAN ANTONIO, TX, United States (UPI) -- Patients who visit hospital emergency rooms for treatment of out-of-control pain frequently find that you can`t spell relief 'E-R', according to recent studies.

'The results of these studies show that persistent pain is common and substantial after emergency department discharge,' said Knox Todd, director of the Pain and Emergency Medicine Institute at Beth Israel Medical Center in New York.

'We, as emergency room doctors, do not do a good job at treating the patients who come in our doors,' Todd told United Press International as he presented a pair of studies that examined what happened to patients seeking help for their pain.

In one study, a survey taken online, only 36 percent of patients who appeared at the emergency room in severe pain were examined within one hour. About 47 percent of the people in the survey defined their visit to the ER as 'poor,' 'terrible' or 'the worst experience of my life.'

In the second study, clinicians at 20 hospitals in the United States and Canada interviewed 842 patients after their discharge from an emergency-room visit. They said that 40 percent of the people who arrived in pain left in pain because they were under-treated, untreated or ignored.

'I`m not surprised at all by these reports,' said Samuel McLean, assistant professor of emergency medicine at the University of Michigan in Ann Arbor. 'There is a lack of education and a lack of understanding among emergency room physicians about pain. You can`t look at someone and know what kind of pain they have.

'ER doctors are used to seeing broken bones and heart attacks and recognizing these people are hurting,' McLean told UPI. 'When they see someone with persistent chronic lower back pain who is a minority, not well dressed, without insurance, the doctors becomes suspicious and the first thought is not that the person is in agony, but that he or she is looking to abuse medication.' McLean did not participate in the studies but concurred with their findings.

In the papers presented Friday at the annual meeting of the American Pain Society in San Antonio, Todd and colleagues also reported:

-- About 21 percent of patients said they waited more than three hours in the emergency department for doctors to see them.

-- About 25 percent said the ER doctor believed them when they explained they had out-of-control pain, the reason 88 percent of the people with pain went to the hospital.

-- About 15 percent of ER experiences resulted in doctors taking immediate action. More than 30 percent of the time the patients said the ER doctors 'didn`t believe my pain.'

-- In the survey 47 of the patients went to the emergency room because they said their primary care physician would no longer treat them, mainly because the doctor was concerned that he was already giving the patient a high dose of opioids or that the doctor said 'he had done all he could do.'

-- About 44 percent of the patients said they felt they were treated with dignity.

Penny Cowan, founder and executive director of the American Chronic Pain Association, said she hopes the Internet-based study will help prompt more research into the area and result in education of both doctors and patients about chronic pain and the role both doctor and patient have in controlling it.

'This preliminary survey highlights the many challenges faced by those seeking relief from chronic pain,' she told UPI. 'There is a marked mismatch between patient expectations and the emergency department treatment of pain.'

Todd agreed. 'Further research is needed to assess if more aggressive analgesic treatment during the emergency department stay may provide better pain-related outcomes after discharge,' he said.

Woman Arrested Over Pain Relief Prescription

Walgreen's is at it again, folks....


Tacoma woman sues drug chain over arrest

The Associated Press


A Tacoma woman with an incurable brain tumor has sued Walgreen Co., saying that when she arrived to pick up her painkiller prescription one day, a pharmacist had her arrested.

In a lawsuit filed Thursday in Pierce County Superior Court, Shannon O'Brien, 35, said she went to the drive-up window at a Walgreen Drug Store two blocks from her home in Tacoma's north end last July 7. The pharmacist on duty thought she had faked her Percocet prescription and called police, the lawsuit stated.

"I was in hysterics, crying, very upset and very embarrassed," O'Brien said Thursday. "They could have checked my records. I've had the same medicine every month."

A woman who answered the phone at the pharmacy Thursday directed inquiries to Walgreen's regional office in Bellevue, where a telephone message was not immediately returned.

A spokeswoman based at Walgreen headquarters in Deerfield, Ill., said yesterday she could not comment on pending litigation.

According to the lawsuit, when the pharmacist called the University of Washington Medical Center's neurosurgery department to ask about it, he was told that O'Brien's doctor, Alexander Spence, was unavailable, so the prescription couldn't be confirmed right away.

That's when the pharmacist called Tacoma police, the lawsuit said. O'Brien was still sitting in her car at the drive-up window when they arrived.

O'Brien's family posted bail that night, but she was still without her medicine. She was arraigned the next day; as a condition of her release, she was required to attend a session at a drug-treatment facility.

Her lawyer eventually succeeded in getting the felony prescription-fraud charge dropped after her doctor provided confirming information to the Pierce County prosecutor's office.