Wednesday, December 7, 2011

A win for the good guys

The outrage today reached some seriously epic proportions as Paypal scrambled to release a statement that they were working with Regretsy to fix things even before April Winchell got the call from them. They threw their phone rep under the bus for the whole thing and are doing as little as possible but the main thing is that they've released the funds and the Santa drive can go on as intended. If you helped spread the word, thank you. Not even eBay/Paypal can ignore it when the spotlight is turned on and thousands of people point their fingers at them. The fact that local, national, and even international news services picked up the story didn't hurt. :-)  

As I said earlier, whether you love or hate April doesn't matter.   A big corporation did something to hurt people in need and April and her followers stood up and said that we aren't going to stand for it......and it worked.  Will it stop paypal from screwing over other people?  Of course not.   No one is going to believe that their hearts have grown three sizes bigger today.  But there are 200 families who are going to have a bit of Christmas cheer because enough people had the back bone to stand up and point their finger when they saw an injustice taking place.

Tuesday, December 6, 2011

Help save Regretsy's Secret Santa from Paypal

Whether you love or hate Regretsy, there's no denying that April Winchell and her followers do some seriously wonderful things when they set their mind to helping someone in need. This year they adopted 200 children in a Secret Santa gift giving drive that not only reached the goal of $3000 in just a few hours, but actually generated enough donations to provide a little extra to their parents so they could put a Christmas dinner on the table. I mean, we're talking about kids who are so sick that their parents can't afford gifts because every penny goes to doctor bills.....parents who are unemployed.......even one child whose father is dying of cancer and might not even be around on Christmas morning. April may be snarky, but that woman has a heart of pure gold when she sees someone in need.

This is a genuine "I see something I can do to help so I'm going to do it" kind of caring about fellow human beings. I get so sick of seeing huge charity organizations spending 90% of the donations they receive on fancy luncheons and motivational weekends for big contributors, that the kind of love Regretsy dishes up is refreshingly sweet, direct, honest, and above all, genuine.

And then Paypal had to go and screw it all up by saying that April was wrong to use the donate button because she's not a non-profit. Said the PP rep, "You can raise money for a sick cat but not for poor people". Really? I think that's a new low for a big corporation. April tried to fix it and they made her undo it again. So far Paypal has taken their share of transaction fees *FOUR* times but Regretsy is no closer to getting the toys to the kids. In addition to all that, they've frozen April's account which includes the bank account anchored to it and all the proceeds from her recent book and will not remove the freeze for 6 months. So yeah, she's paying a pretty high price for trying to make sure 200 needy kids got something nice for Christmas and their parents didn't have to figure out how to sculpt a turkey out of Spam and split a package of Ramen six ways.

You can read about it here (strong language warning) or you can just google "regretsy, paypal" and read all the news stories that are popping up this morning after the outrage started last night. It's also trending on Twitter (#paypalhatesxmas). 

Right now the goal is to get Paypal to fix this mess so the toys and dinner funds can get to the 200 families in time. As it is, shipping time is going to be cutting it pretty short. You can do some things to help if you'd like to.......there are email addresses listed for Paypal executives in the link above so drop them a note and tell them how you feel about it. Most of you reading this have business accounts with Paypal and we're the ones who put the caviar on their toast points at those motivational weekends so they might listen to us if enough of us speak up. You can sign a petition at that will be going to the CEO . If you have a blog you can give them a shout-out to raise awareness or you can share this post on your Facebook page or write one of your own. Whatever you can do will make a difference.

Y'all know that for me to write this much right now is an effort but I can't sit back and watch another huge corporation cheat 200 little kids out of what may be their only Christmas gift and dinner. Most of all, we can't stand by and let another cold corporation dictate how and where we give our charity.

Saturday, October 15, 2011

Another dead end

I saw the new oncologist yesterday and as soon as she walked into the room she took off in a machine-gun speaking style, educating me about why I shouldn't be there.   She shoved me back to the neurologist saying that it's up to him to fix the strokes.  I pointed out the fact that my blood is turning into syrup and went over the related problems like the decreased oxygen saturation in my blood that has led to nasty things like pulmonary hypertension and potential organ failure.  Nope.  Not her problem.  She told me to go back and see the neuro for help with the strokes and find whoever else to fix the other problems but apparently nothing about my blood is her problem.  Silly me.  How did I not know that oncologists are Gods and we're not to trouble them by reminding them that they're also hemotologists? 

The good news is that I don't have cancer.  Yet.  What I have is MGUS (monoclonal gammopathy of undetermined significance).   It's a precursor to cancer so yeah, I have that to look forward to.   It's a half-ass celebration because while I don't have cancer now, I need to keep being tested for it because it's pretty much a matter of time.  But to be honest, I don't really give a rat's ass if I have cancer or not---at least if I did they'd finally *treat* something!  What I really care about is the fact that there is something every bit as deadly and every bit as horrible as cancer happening to me and I can't get one single doctor out of 27 to figure out what it is and do something about it.  Where in ANY medical journey does it say that it's okay to have 95 strokes without being treated for strokes?  Or an oxygen saturation of 77% without knowing the cause and treating it BEFORE my lungs, heart and kidneys give up?   And even tho I can be relatively certain that most doctors don't  care about me or my problems, I care considerably about the fact that my brain is turning into a turnip.

I'm confused because I went in there with a test result showing a spike in IgM.   I had the paper in my hand and while my brain isn't running on all six cylinders anymore, I do still know the difference between the M on the paper and the G that she says I have instead.  She says that her tests are more accurate.  And as for that bone survey, she said I can just get around to it whenever.  Okay, how about never?  Does never work for you because never works best for me.  I'm going to be too busy trying to find a doctor who can actually figure out what's going on with my blood and besides that, I can't afford another however-many-hundred-dollar copay that this bone survey scan is going to cost.  

The neuro didn't want me to come back for six months and had absolutely no intention of treating the strokes. The oncologist said that neurologists are always the ones who treat strokes so I have to talk to him about that. (I'd disagree with that because when my dad had two strokes, they called a hematologist, not an electrician)  And who treats the hypoxia (low blood oxygen saturation) when two pulmonologists and a cardiologist have given up if it's not the hematologist?   She didn't know but she's sure it's not her or anyone else in her specialty, as was verified by the first hematologist I saw.   So this was a very expensive trip down yet another dead end and now I'm back to where I was, except more tired, more sick, and more screwed up than before.

I'm sorry to sound so negative.  It seems to have become impossible for me to remain positive these days.  I found out one reason for that is because the EEG showed there's some damage to my brain in the area that controls emotion, and positive-thinking may be one of the casualties of the strokes...but as much as anything, I'm just tired and ready to give up.  There's no where else to go and I've run out of doctors and options, especially since none of those 27 doctors are willing to treat anything.    The oncologist wanted to know why my rheumatologist isn't treating me with immuno-suppressant drugs.  Um, because my rheumatologist thinks I'm too young to get tuberculosis?????   She and I talked about the a-i suppressive drugs a long time ago and the risks are way too high for the small benefits I'd get from them.   Yes my auto-immune system is a psychotic over achiever and no, killing it is not the answer.  The list of "did you?" and "Yes I did" is seemingly endless and there's no door marked Exit to get me out of this mess.  

So that's where things stand now.   Days of being too sick to get out of bed, a brain that looks like swiss cheese, too many medical issues to even think about, and there isn't a single doctor who wants to see me again for at least six months. 

Thursday, October 13, 2011

Losing a parent, losing ground, losing brain cells

About an hour after my last post I got a call telling me that my father had passed away.  There is so much that I want to say about him but I'm not quite ready yet.   Mainly I'm just happy that he can be at peace now but I miss him so much.  He had Alzheimer's so I've been missing him for a long time already but it's still hard to say the last goodbye.

The test results from the EEG came back today.  The dr said that there aren't any signs of seizures (yay!) but there is definitely a pattern of disorganized activity, more on one side than the other.  That's all indicative of the damage from the strokes.  Right now there's nothing being done about the strokes until we find what's causing my blood to turn to syrup and that will be up to the oncologist.

The rheumatologist called with her test results too.   The tests for RA were negative (just like we knew they would be) but the tests she did for monoclonal gammopathy weren't.   There was also another test that popped up showing signs of an active infection--except I don't have any infections; not even a sniffle or a hangnail.  So that's not necessarily a good sign but I told her to send the results to my new oncologist and we'll see what she makes of it.   At least she'll have the results of that IgM test from three different doctors all showing the same results (plus the one showing a pop in white cells which is so not good) so there won't be any doubt that yes, I do have a spike in immunoglobulin m.   Whether it's precancerous or cancer is still unknown but I see the oncologist on Friday and hopefully she'll get the process started to find out.

I'm open to any treatment right now.  I haven't been able to get out of bed for two days again because I've been so sick.  Every time I move a wave of nausea washes over me.   Seems like I lose a little more ground every day but then this has been a really rough and emotional week.  

Good night Daddy.  

Saturday, October 8, 2011

As long as I'm up

I'm having an EEG today because they want to make sure that I'm not having seizures in addition to strokes.  Suuuuuuuuuuuuure.   Why not.  So I'm up before the sun because there are some rules you have to follow before you have an EEG.

One is no caffeine.  *whimpering quietly*  I've weaned myself down to just one Mt Dew a day but I still get nasty-wicked headaches if I don't get my caffeine.  *checking the clock*  And it's going to be another 6 hours before I can have one.  That's a very long time to have one of these headaches.

The second is that for some reason they need you to be sleep deprived for the test.  That one mystifies me just a little bit but it's their party so I'll play along.   They said to go to bed two hours earlier than usual and get up two hours earlier than usual.  I did the math and that means that I only get 20 minutes of sleep, and that's only if it's a good night.  And to top it all off, I can't take pain meds because it could screw up the results.

This test was originally scheduled for last week but someone forgot to tell the tech so I went thru all this, got there and waited for an hour, and the tech never showed up.   Needless to say I wasn't a happy camper about it.  People who don't have insomnia have no clue what it means to ask an insomniac to give up sleep.   When you have insomnia, sleep is the most important thing in the world.  Hell, I don't even mind getting 60 shots in my back all at the same time because they knock me out for it and I get a good one hour nap!  Yes, I completely understand why Michael Jackson used anesthesia as a sleep aid.   To paraphrase a portion Stephen King's book "Insomnia", "Thousands of people die of insomnia every year  they just put "heart attack" or "suicide" on the death certificate."

If you've never had *chronic* insomnia you know exactly what I'm talking about.  Every precious second of sleep you can get is golden and every additional second that you lose is agony.  I'm not exaggerating about that either.  Insomnia is painful, especially if you have other issues too.  For me, sleep is the only way my body  can escape from pain and, more importantly, it's the only way my body can have any time to relax and heal at all.  It takes days, if not weeks, for me to completely recover from the effects of a night without sleep or even reduced sleep.  Since this is the second time in two weeks, it's twice as hard as it was last week.

There is the additional factor that the first major cold front of the year pushed thru this morning and there's freezing rain pelting the windows.  Neither Arthritis or Fibromyalgia are impressed with dramatic weather changes so my joints and my muscles all feel like we've gone ten rounds with Mike Tyson.

With any luck they'll get some useful information with this test.  I don't think I'm having seizures but who knows.  Even if they can capture some info about which parts of my brain aren't working correctly it would be helpful.  I just want to know that going thru this twice and paying a giant co-pay is worth it.  At this particular moment in time, I'm having some serious doubts but then again, I'd do just about anything for a Mt Dew and a two hour nap.

The longer I type, the sleepier I get so it's time to attempt moving around before the narcolepsy hits and I pitch face down onto the keyboard.  Perhaps I'll get in an hour or two of playing Neverwinter Nights before it's time to go.