Too long of a post?

[greygirl]

I have another CLL site I was on, American version. A famous doc who has CLL wrote a post about how smart it is to take your shoes off before entering house. I gave my little two cents which was about 30 words about how true that was and proceeded to tell my experience about bare feet on soil and germs and parasites when I was in Thailand and the advice from a CLLer who was my kindred spirit from Fla. The director proceeded to tell me I need to keep the length of my comments down as it was too long. It was as long as the one I am writing to you now. I said don't worry I won't do it again because will not get a message from me anymore. I will go to my European site where they don't judge by the length of your comments!

[AussieNeil Partner Administrator]

You can post your full response to his post here ;

healthunlocked.com/cllsuppo...

[greygirl in reply to AussieNeil]

Here is the reference he gave to this subject: http//society.org/2017/04/please -remove-shoes-call/

[AussieNeil Partner Administrator in reply to greygirl]

I've corrected the link you supplied cllsociety.org/2017/04/plea...

Brian posted the link to his article in the post I referenced above.

I couldn't see where comments are added...

[greygirl in reply to AussieNeil]

I thought iwrote it down as he posted it sorry.yup, went back looked at it exactly as I printed it wish I could show you but I don't know how do it.

[AussieNeil Partner Administrator in reply to greygirl]

I suspect you are more affected by your current low haemaoglobin than you realise. Wishing you a quick improvement!

[greygirl in reply to AussieNeil]

Well there was a http and remove shoes after it my HGB not that low!

[greygirl in reply to greygirl]

Ok missed cll part blame it on RBC is the CLL part important? Just kidding!

[ThreeWs]

Hi greygirl and all,

Most people crave simple answers to complex problems. Context is important so I try to supply important details to what I know or experience that might be relevant but not necessarily true for every reader. I try to supply a "simpler" take-away summary at the end for those who don't want to eat the whole enchilada.

We who live with CLL know that there are often no simple answers.

WWW

[greygirl in reply to ThreeWs]

It was a post from Dr Hoffman about how important it is to take your shoes off before coming in the house. And I added my two cents about an experience in Thailand. I was always one of those free spirits that didn't like shoes and would go barefoot as much as possible so I told experience of how I was in Thailand and of course they always take shoes off before coming inside. We went to visit an old missionary and his wife and even though it was winter so hot and the ground was soft dirt so I decided not to wear my shoes and he told me to put my shoes on and I asked him why and he said that there are parasites in the dirt that can enter through a cut in the feet. I put my shoes on! Also in Thailand for some reason they have their sewer grates in the sidewalk not street which you had to walk over them. I was telling my experience one time to a friend that used to live in Fla. and she said you have to be careful in Fla also when you are barefoot because you can get parasite infiltration thru cut on feet in the sand. Good advice be careful if you have an open wound or cut on your foot esp us who it is very easy to get infections. I don't have a problem on this site because everyone has their own spot to comment and somehow you don't have to keep deleting the comments before yours which I always forget to do just a big mess of confusion!

[mgh348 in reply to greygirl]

From what you have said, I can gather you might have been on ACOR. That is an old technology, definitely not so user friendly. I think that is why your post was too long. The format doesn't know how to deal with it. Another site you might like is "CLL Support Group" in Facebook, also "CLL/SLL/NHL Cancer support for women" in Facebook.

Maxine

[greygirl in reply to mgh348]

No there is something about how you have to delete the posts before you I forget do it I have chemo brain right now not enough O2 which I'm on now because RBC was at2.4 HGB 8

[MsLockYourPosts Passed Volunteer in reply to greygirl]

I think Maxine is probably right, that you were posting on the ACOR group. It will kick out a post that is longer than a certain length and if you post a certain way all of the previous posts connected to the one you are responding to will show up. After each post there are 4 link choices in blue. I always click on the top one, put the same subject in so people can find my post later if they want to and then type my comment. That way only what I type shows up. I never did figure out how to do it any other way. It would be the ACOR system, not Brian or another human which rejected your post automatically, though someone might have sent you a message explaining why it didn't go through. The link would take you to the CLLSociety.org site which is a great site, with a great list of links to CLL specific resources as well as good, up to date information, but your response would have gone to ACOR.

I remember dealing with an HGB of 8. I hope your's comes up soon! The best Facebook group is Chris Dwyer's Bad to the Bone. If you PM him here he can tell you the easiest way to join. It is a private group. cllforum.com is another good group.

[greygirl in reply to MsLockYourPosts]

No there are 3 little dots you're suppose to hit and I forgot do this and your response takes on all the other responses and it gets long and lost.

[MsLockYourPosts Passed Volunteer in reply to greygirl]

Now I'm curious. I've never seen that in a group. Brian posted the shoe thing on several sites, so if it wasn't ACOR I have no clue.

[greygirl in reply to mgh348]

I finally figured out how to get on facebook thru my new cancer center. All my relatives are there and now I can talk to them whether they want to or not!

[greygirl in reply to mgh348]

You would think with all the wealth in USA they'd have a decent technology! Now all you Americans don't attack me! Remember the bill of rights.

[MsLockYourPosts Passed Volunteer in reply to greygirl]

LOL! Many Americans have been frustrated with the technology of different sites, also. You will find those who understand technology agreeing with you. The rest of us just do the best we can. I need a five year old to teach me all of the things my computer can do. I'm pretty clueless about it all.

[greygirl in reply to MsLockYourPosts]

I remember before I ever saw an American with a cell phone in their hand I saw "poor southern Italians " walking around with cell phones and had to ask what it was! How about the blue tooth? I thought someone in the airport was crazy because they were having a conversation with themselves!

[SouthFloridaLady in reply to mgh348]

Maxine, I am on both those f/bk pages and find them to be excellent.

[Bassmaster in reply to greygirl]

Also be aware of the fact that where ever you have decaying vegetation you can find blastomycosis. I was not so lucky I discovered it entered my lungs and attached to my right hip and was eating away at the pelvic bone.

11 days of treatment in the hospital 8 hours a day and then on itraconazole(anti-fungal drug,twice a day for over a year) Which I was also a CLL patient was lucky they caught it early on

[greygirl in reply to Bassmaster]

Do you mean like decaying leaves? Got those around us all the time living around woods.

[Bassmaster in reply to greygirl]

That is what the infectious disease Drs suggested could be the source of the blasto, or it could be from working in the compost bins that I have, but more than likely the decayed leafs that I was using in the compost. Now I hear not only gloves and long sleeves but also a 95 micro mask

[greygirl in reply to Bassmaster]

Yeah, that decaying matter might be problematic but since my immune system never recovered from FCR I wear a carbon mask when doing leaves or digging dirt which is virtually impossible where I live. I always hated to garden because I don't like the feel of dirt on my skin,the smell of it in fact I tried gardening in my landlords piece and proceeded to get ringworm from soil.last time I gardened!

[Bassmaster in reply to greygirl]

Sorry to hear you did not receiver from FCR . I guess I was lucky with this treatment .I finished last October and in Dec I was told I was in molecular remission. (They could find no trace in my blood or bone marrow) I dont have to see the Oncologist again until Sept/2017

[greygirl in reply to Bassmaster]

Yeah after FCR I suffered from all kinds of rashes on face and chest and my port scar would stay red and itching,pinching. Went to PCP and ran all kinds of tests and found nothing this continued for 6 months in which I proceeded to get a sinus infection that wouldn't go away and then it was time for treatment again! Then began the next two drugs.

[greygirl in reply to Bassmaster]

I was rereading your comment about blastomycosis and I thought about how my neighbor feeds the deer corn(he is not supposed to do this according to our neighborhood "covenant" and of course you know what animals do after they eat, anyway then he will come one day(he lives in the city-NYC- and uses a leaf blower to blow all the leftover whatever and I never looked to see what direction he does this, toward my house or empty lot next door-either way it gets into the air. My lung biopsy showed I was exposed to something I breathed in-but still it all happened while I was on zydelig.

[greygirl in reply to ThreeWs]

It was a personal experience WWW not an exhortation on deletions and CLL jargon.

[greygirl in reply to ThreeWs]

I wasn't writing an essay on deletions or the explanation on how CLL happens or something the great Terry Hamlin wrote just a simple event about my experience in Thailand and advice from a former friend.

[kids4]

I CLEAN THE SOLES OF MY SHOES WITH BLEACH WIPES BEFORE TAKING THEM INTO MY HOME

[greygirl in reply to kids4]

I only wear slippers or barefoot and have shoes by door ready to walk out-linoleum floor and pair by sliding glass door my husband doesn't always want to cooperate and will walk in house with shoes from outside and says I'm unreasonable end of story.

[MichelleM61]

Thank you for sharing!

[PThomas]

Here in the Southern portion of the USA our reply would have been "Bless your heart" We use this phrase inter-changeably as a blessing an d a curse!

[ucallihaul]

my understanding of blastomycosis is that it orginates with decayed plant materials and is well know in S E Asia and certain parts of North America- around the Great Lakes, near Winnipeg,MB Canada Kenora,ON (NW Ontario) Vancouver Island. Also the experts have know idea how long it may be latend in the lungs/or bone-in my case, before it was activitated Having CLL more than likely allowed my immune system to not be able to fight back

[greygirl in reply to ucallihaul]

oh well, another disease to worry about getting! I`m concerned when I just get a cold now. Hopefully it didn`t take them too long to figure out your problem. I was in Thailand once but I had no indication of CLL.

[ucallihaul in reply to greygirl]

actually is happened before Xmas and they did not match up the biopsy results until Jan 24 2015 and then I got one day to report to the hospital for 13 days of infusions 8 hrs a day and then on Itraxondazole for a year before I started chemo