Sunday, April 20, 2014

33. Why I Am Not in the Russia-Hsct Forum - once and for all

(sorry - this just has to be done and will not make sense to some - but I need to clear my plate)

Брань на во́роте не ви́снет.                    Sticks and stones may break my bones, but words will never hurt me. Literal: The scolding won't hang on one's collar.

I am and have been deluged with PMs on FB asking what happened, and why I am not participating in the Russia-HSCT "forum" anymore and it's been a huge task to try to answer in a constructive way when it baffles me, too.  I think it is a 'girl drama' thing. I will try to briefly address anything I think I might have done wrong, and also the way it was delivered to me, and I'm just going to point all PMs to this update in the blog from here forward. I'm into chemo now, will not have energy (or interest, frankly) to continue to answer this issue.

What I have continued to say is this:  The important thing is getting the word out for HSCT. Susan Dean is not the story. HSCT is the story. Any help we can all give one another furthers the cause and heals more of us, and I will continue to share anything I can think of here that will ease the journey of the next, and the next, and the next, and make it a softer landing, an easier trip, a successful healing. I just won't be doing that on their forum.  

    I have no time for hen fights, I'm doing chemo. That's enough on this old woman's plate

Oddly, when I was brought into Dr. Fedorenko's HSCT program as his first CIDP patient and also the oldest patient, I joined the Russia-HSCT forum on FB both to learn more about the Russia experience, and also to open the door to lots of CIDP and other autoimmune hopefuls that followed me into that forum.  When I joined, about 100 people were in the forum. When I left, over 500, mostly from the 60-Minutes and press the Aussies are doing.  Cultures sometimes clash in style, as we know.  While lots of 'newbies' as they refer to someone new to the HSCT arrived, also a lot of very knowledgeable people who have researched HSCT over a number of years joined, not all with questions but even with some answers and intelligent advice to share.

I travel a lot, have 40 years of international travel and lots of it involving moving money. Months ago the question was asked about how to do that more easily, and I gave suggestions of what I've learned over the years works, and I was asked then to post on the day I paid my HSCT bill to give a 'blow-by-blow' of the results.  And so I did.  It was obvious one admin in particular was posting along, undermining each thing I said and also diminishing it. I didn't know I had a problem with that one person, having been nothing but supportive of her throughout (I thought). But it became very obvious she resented me answering questions on that forum.  I think I underestimated the "top-down" mentality, and that we 'newbies' were just to remain silent and in awe of the info the admins shared.  It's a new concept for me as regards FB Forums, since in all the others, information is freely shared and all benefit.

In any case, for my part, I will admit that stress causes me to blather a bit, and I was already in Moscow, on my own HSCT journey and looking to get info out and straight, and then to retreat back to my own process. The added comments on that string seemed to confuse people (and were naive, frankly, and a thinly veiled jab at me, to boot). That caused more questions to be added that had already been answered well, fully in the original post. My payment process took a total of 10 minutes and even with a small glitch, went very smoothly.  Just as I expected, having prepared and with Plan B as back-up. But the bothersome appearance of 'flak' was carried over into a PM group of women and it was obvious then that at least a small handful had been gossiping about me there, too, which is just something I have no time or patience for.

I believe: Immature women backbite, mature women empower one another.  

Делать хорошую мину при плохой игре.
                                        To put a brave face on a sorry business.

So on the day I was through testing, elated beyond measure that I was accepted for HSCT, older and with CIDP, this girl drama played out in an ugly manner, and I quit the PM group, only to have another PM from my primary attacker listing all manner of my faults, and the final one to tell me I always have to have the last say - which I thought was rich, since it was not I who had been having the backbiting say, nor the last say, either.  So my feelings were hurt. I wasted a lot of time being supportive on that PM support string, too. ; )

Stress added to my entry to HSCT that  was anything but 'support' and then I also got an immediate follow-up after quitting the SOFA PM that I was being removed from the Russia-HSCT forum, as well.  Mean girl has some balls, and some power!  But she does not have me!  

She told me she had had several PMs saying I was 'brash', which could be the fact that I was stressed, had 48 hours a day of things to do and with CIDP, only 12 hour days to do them. I asked for details, and offered blanket apologies, but no one pointed out to me where I had erred, so I lost sleep over worrying who I needed to apologize to that had thought me 'brash'.

But I will accept that I might have sounded brash, stressed, etc.  I think this was when I posted questioning why anyone was running a fundraiser for $100,000 for a $40,000 treatment, noting I donate to loads of these fundraisers and bring along friends to donate, too, and we all work for our money, as well, and don't like the thought that someone is making so much extra for $25,000 1st class airline tickets, spending leftover on family trips, etc. I think if you're asking others to sacrifice from their budget, you should not pad yours.  It hurts the fundraising efforts of all in the end. 

It was not made clear to me when she thought I was sounding brash, and I'm not usually accused of speaking out brashly, so I'm unsure. But this is what I suspect was 'brash'. 

She said I posted long posts.

I've already explained I am not editing, and stress makes me blather a bit more than usual. CIDP makes me have less time to edit, lots of pain to work through, some of it might enter my text.

What else?  Just general stuff you'd expect in a High School girl drama rant, and nothing about that felt the least like I was getting support from the support group I'd been trying to give time to as support for the last group through HSCT, and no longer felt friendly nor safe. So I just quit the club.  I still do not know what it was about, and though I asked for examples, none were given. But I think hierarchy of authority played in. I must have stepped on toes. It was my failure not to see the important leadership position so tightly fisted, or to have misread it. 

And added later, given as reason for my abrupt removal - one or two apparently thought I was 'condescending' or 'uppity' because I answered from an experience not yet theirs? I can think of mentioning the Sferra blanket I bought for the trip. CIDP's demyelination is not limited to motor or peripheral nerves. Though not all CIDP patients have severe sensory and pain issues, there are many of us whose small nerve fiber system is demyelinated. For a year after Dx, I had such excruciating pain - pain that made no sense. I could not stand to have my skin touch anything. It all hurt. Even skin to skin - you find ways to sleep without your feet touching anything at all. You want to just chew off your hands to get some relief. Even air hurts. The CIDP patients who have searched out ways to help fool the damaged small nerve fibers would have not cared that it is Sferra, but they would have understood the unique softness of this one cotton blanket in a way I think MS patients never could. The fibers aren't woven, they're sort of pressed.  Cotton is cool or warm, depending on the need. Synthetics are torture. And even that woven rib on your blanket you like - massive pain if the ribbing activates the errant nerve impulses. It is unique to CIDP. I have CIPD. If anyone was offended by the thought that I would pay more for a particular item, consider the value to me to eliminate nerve stimulation and try to sleep with less pain.  You don't walk in my shoes. It doesn't feel like walking in yours. But nothing I ever mentioned was meant to make you feel like you were poor or underprivileged, or not classy enough.  Believe me!  

I am the first CIDP patient treated with HSCT here in Moscow. AND the oldest. I've had time to get past the salad days, as they once called them. I have a few luxury things, and experiences by this stage of a very hard-workng, self-earned life. If anything I said made anyone feel 'diminished' in some way related, you have my sincere apology. I am not one-dimensional. 

I am not without faults! Nor are any of us. I have plenty of them. But I also have great strengths, good attributes. Her words didn't shake my sense of who I am. It only told me that people who presented themselves as 'support system' were anything but. And that the callous timing of the attack was just awesome in its inappropriateness, truly.  I would never have done something like that to any person entering HSCT.  That was just flat-out cruel!

Как ау́кнется -- так и откли́кнется.
                                                      Do unto others what you would have them do unto you.
 Literal: How echo is prompted, so it will bounce back.

I was awed by the sheer disregard and cruel nature of it, frankly. And it did sting!

Козла́ бо́йся спе́реди, коня́ -- сза́ди, а лихо́го челове́ка -- со всех сторо́н.
                                            Beware of the cat that licks from the front but claws from behind.
 Literal: Beware of the goat from its front side, of the horse - from its back side, and the evil man - from any side.

Знал бы где упа́сть -- соло́мки б подстели́л.
                                                                   Had I known then what I know now.
 Literal: Would I know where I will fall down, I'd lay some straw.

Some of the best things about me are that I will tell you what will help your path be easier, and I'll encourage and support you in your path to health. Solid!

Once you have a group of 500 people or more, all with their own problems and fears, illnesses, all nations, not everyone will like everyone. I'd had PMs about my attacker, too, but I handled them by saying she is trying to do something good here, and no one person will be liked by all. I didn't jump on their attack band wagon. It is not leadership to do so. Put out little fires, no need to let the embers spread.

And as I tried to find Russian quotes that fit my topic, I was struck by just how many there are, so this is a human problem that defies boundaries or Nations.

На всех не угоди́шь
He who pleased everybody died before he was born.
 Literal: You cannot please everybody.

So in the end, I will still be me, supporting, donating, paying my own way as graciously as I can, having worked my entire life since 15 to get to this point in time where it's possible to just write the check, give the airline tickets, etc., etc., and will still be sharing any info that can ease your HSCT journey, and the small drama is dead in the water.

Мно́го шу́ма из ничего́.
                                             Much ado about nothing.
 Literal: Much noise from nothing.

I believe: Immature women backbite, mature women empower one another.  

Now let's get back to working on getting HSCT the topic, the goal, the norm for all and let this little drama die a kind and gentle death. So many lovely women! (and men) There is no hierarchy for healing, for solid correct information sharing.  We're all on the same path here. I choose to walk it with those beside me, arm in arm, getting healthy in all ways. 

NOTE MAY 6:  I've kindly asked a second time that the blog link be added (or at least not be actively removed when forum members have added it) because I think it is a good tool for you. But so far, Admin refuses. One person, perhaps two whose heels are dug in deep and so you must find my blog outside the Moscow-HSCT form, sorry. 

Will be migrating it to Wordpress after I get home (will pay someone to do so who can do it well). At that time 'follow' will be simpler, and 'share' and also a fund raising function totally dedicated to helping others get to HSCT. I was fortunate to not have to fund-raise. I help those who do. I understand how hard it is. I can help, and that is why this blog exists.  This is my 'pay it forward'.

Thanks for not sending more PMs to ask about this issue, (please). And thank you to the many many many whose support I deeply felt over this silly serious issue. 


  1. Their loss!!! Way to "put a brave face on a sorry business" Susan, use your energy to battle the CIPD, stay strong through the HSCT and then HEALING, in every way!!!

    1. Thank you, Diane, for having my back, too. My old friend! We know where to set the eye on the goal, don't we - and from way back. Perfect people don't make interesting friends OR lives. I love you!

  2. I have been reading all your blog and think it is wonderful . You are wonderful too .. Just be you and tslk as much as you want .. You are paving the way for the rest of us .. Maybe that high school drama queen is jealous that you got to go to Moscow. Carry on dear !

    1. Thank you, Sandee. It was a simple blip that distracted from the fact that everyone does not need to like everyone - we just need to work together to get HSCT available for everyone. Someone thought I was answering questions they should have answered, I think, but it's over. I'm not into extra baggage - just into healing. I think we empower one another and get there. I think we load the cart with unimportant crap and we don't. As the Russians say:

      Ба́ба с во́зу -- кобы́ле ле́гче.
      No woman, no cry!
      Literal: It is easier for the mare when a woman gets off the cart.

      My cart got lighter when the woman got off! Think positive, get healed, make a positive difference for someone else. Moscow isn't the goal - HSCT is the goal!

  3. Tom has the same problem with touch.... at times I cannot even hug him because he is in pain.... he cannot stand the feel of socks on his feet at times...... Susan, I am so glad you are here for experience needs.... You, Linda, Alice.... all trailblazers to help those moving forward. I am tired and this may not make a lot of