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jola57
05-09-2009, 01:05 PM
Hi all, flew from Vancouver to London last night and onto Berlin. today I'm in Poland. I feel very good and actually its my 24 year old son who is pooped. I wore my diabetes socks so I didn't have swollen feet. I rented a car and today will be driving to my inlaws. When I'm back in London I will post my cell number and maybe we can have UK weggie fest somwhere:D:D I have brit rail so can go anywhere:)

Sangye
05-09-2009, 02:11 PM
Have a great trip! Thanks for the sock tip-- I might try that. Lots of swelling due to clots.

pberggren1
05-10-2009, 08:15 AM
Have an awsome time Jolanta. I've always wanted to go to eastern Europe. There is so much history, beautiful scenery, and beautiful architecture there.

jola57
05-13-2009, 09:25 AM
:)I'm here, no problem on the plane. The socks helped and I had wonerful ankles, now they are a bit swollen so I am trying to keep them up:D

Sangye
05-13-2009, 09:54 AM
Thanks for the tip about the socks. I ordered some online and can't wait for them to arrive. I have awful swelling that get worse fast with standing and walking. Like my legs and feet fill up like sandbags. Glad you're doing well!

Doug
05-13-2009, 03:12 PM
Thanks for the tip about the socks. I ordered some online and can't wait for them to arrive. I have awful swelling that get worse fast with standing and walking. Like my legs and feet fill up like sandbags. Glad you're doing well!

When I first entered treatment, my feet were the size of Polish hams and my toes looked like kielbasas! That's for Jolanta, for whom I feel great envy just now! Though I've familiarity with large chunks of Western Europe, the only way I could have visited Eastern Europe, if at all, during the time I was stationed in WE would have been to wear my US Army dress uniform at all times I was in the east. Clearly that wouldn't have been fun! The alternative would be to risk detention as a spy, also a bad way to spend your holiday.

p.s. I'm a big fan of Chopin and Polish people generally. I've known a lot of them! :)

Sangye
05-13-2009, 11:55 PM
Polish hams, LOL. It's actually...pretty...accurate.

I realized last night that I assumed the diabetic socks helped push the edema out of the feet and legs, like the dreaded TED stockings, but without the dread. Apparently, they just accommodate for swelling--no pinching the skin like regular socks. Shoot.

I may have to resort to the compression stockings again. I wore the full-length ones for 6 months after my first clots in '06. Rubber stockings in a heatwave, no air-conditioning. They compress, and the pred was making my legs swell and sweat. I almost passed out numerous times. It was like a torture device. Maybe I'll try the calf-high ones until it gets hot here. There's no way I'll do the full-length again, though. Thanks for letting me let off "steam."

Has anyone else used these?

jola57
05-14-2009, 09:01 AM
Sangye, the socks are tight and there is no swelling because there is no space, they do not expand. When I get back home I wil let you know the name of the socks I have, so you will not have Polish ham feet no more LOL :eek:

Sangye
05-14-2009, 10:24 AM
Oh??? (Sangye's chin lifts off ground...)

coffeelover
05-16-2009, 12:49 PM
Is it common with WEGS and/or the meds for WEGS to get blot clots in the legs?
I have always had UGLY legs with "very gross" (varicose) veins and assumed because both my parents have the same issues that it was heriditary. But after being on the pred and MXT for 4 months I started to developed some nasty clot type symptoms in my legs. Maybe it is a part of my BFF's present to me?
LIsa

Sangye
05-16-2009, 11:52 PM
I always had varicose veins, too. Really big, even in my 20's. Also, my inner ankles have looked like an old woman's since my early 30's. (Ain't that a pretty picture?) It's a combo of genetic predisposition and liver congestion.

Varicosities (bulging) occur in superficial veins-- so we can see them. Blood clots occur in deep veins. They're known as "Deep Vein Thrombosis" or DVT.

DVTs are not common with Wegs, but they're not rare, either. Recent research (the last 2-3 years) is finally recognizing the connection. The general theory is that global inflammation also causes the vein lining to be inflamed. This sets off a chain of events causing the blood to clot there.

When I got clots in '06 my doctors (not Wegs docs) were completely puzzled. Now I've learned that clots are more likely if the Wegs is active--particularly if the inflammation levels are high. I was in the ICU with hemorrhaging lungs, so....

My clots were as severe as they get-- my legs and lungs were literally packed with them. One clot in my leg was the entire length of my thigh and the thickness of my pinky. Given the severity, I'll have to be on blood thinners for life. The risk of recurrent clots is very high in anyone who's had even one clot. Throw in the uncertainty of Wegs, and the risk is too high.

As a holistic doc, I believe there's a connection between varicosities and Wegs. They're both blood vessel disorders after all. I wonder how many of us on here had varicosities or spider veins before Wegs?

Lisa, what are your "nasty clot type symptoms?" It's something you need checked immediately-- like today.

Sangye
05-16-2009, 11:59 PM
Some abstracts on the Wegs-DVT connection, if you are so inclined :

High frequency of venous thromboembolic events in ...[Ann Rheum Dis. 2009] - PubMed Result (http://www.ncbi.nlm.nih.gov/pubmed/19015208?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

Hey, 'dis my doc :
http://www.ncbi.nlm.nih.gov/pubmed/18281851?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

This is the famous "WeCLOT" study :
Brief communication: high incidence of venous thro...[Ann Intern Med. 2005] - PubMed Result (http://www.ncbi.nlm.nih.gov/pubmed/15838068?ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

Doug
05-17-2009, 03:57 AM
Lisa- At some point, if only to allay your concerns (bring these up with your doctor), you may want to have your legs ultra sounded for clots. I know my doctor sent me to ultra sound for this reason. Part of that was because of my weekly visit to the hospital for Procrit shots through my Greshong line. They followed up by shooting some Herparin through the line to imhibit clot formation, but I thought I had some unusual leg pains, brought them to my docotr's attention, with the ultra sound testing of my legs the outcome.

p.s. Sangre- Before I came down with WG at 55, as early as my 30's, I wouldn't be seen in a "Best Male Legs in Shorts" contest! Yep, lots of broken veins, but not too much on the varicose front. I had a few superficial ones that haven't been joined with others.

p.p.s. You know we are family when we start documenting the disgusting aspects of our condition. Haw!

Sangye
05-17-2009, 07:45 AM
Nasal crusting, mucous, varicose veins, diarrhea, leg ulcers, trachs filled with snot.... Yup, we're one big happy family. Even so, I don't think cable tv would be interested in a reality series based on us!

coffeelover
05-18-2009, 03:18 AM
Yes our symtoms unfortunately are not all great topics while eating....but never the less it is great to share with others who have been there.....so gross as it is...thanks for helping.
Now, on to my "very gross veins" again......On Easter Sunday, I was sitting on the floor at my brothers house relaxing and I felt what seemed like a pop in my leg, near my knee. I then carried a nasty looking bruise around for about two weeks. Does that sound like a clot???? It is better now and no further symptoms that I am aware of anyway. The bruise has completely disappeared at this point.
I will be seeing my rhuemy in about a month and my ENT in a week....so I will mention this to both of them and follow their recommendations.
I should mention that I am on my feet alot at work (I am thankful I can still move as well as I can)
Hey! Wish me luck when I see my ENT. I am hoping for good news. That would be getting a time line at getting the trach out. Sometime before the humidity hits here in MN would be great!
I know, I know..........if I do not get the news that I desire that I should still hold my chin up and know it is for the best.
Also.....I was going to add an attachment or picture (of a bunny cake for our birthday celebration) but could not figure out how. Can someone help me with this?
It is a beautiful day here today...I hope you are all experiencing the same along with good health and fast recoveries!
Lisa Coffeelover

Sangye
05-18-2009, 03:56 AM
Lisa, those are definitely not clot symptoms. Not at all-- you can relax about that one! Most likely is you probably broke a very small blood vessel. Maybe your leg was twisted funny, muscle tensed, etc.... Your symptoms match that very well. Less likely is a ruptured tendon--pred makes us very susceptible to those. You would've had sharp pain at the time, and lingering pain. Least likely is a cyst behind your knee (if that's where the pop and bruise were) that chose that moment to pop. They usually don't leave bruises and I've never heard that they make noise when bursting. If it was a cyst you'd never know it (doesn't leave evidence), but it's good that it's gone.

I hope you can get the trach out before the humidity hits! You're a few hours behind us here on the east coast-- if you're out for a walk at night with a trach in high humidity, I'm gonna wind up dreaming about Darth Vader and wonder why. (I am SO glad you have a good sense of humor so I can joke like that!)

Jack
05-18-2009, 07:11 AM
I was going to add an attachment or picture (of a bunny cake for our birthday celebration) but could not figure out how. Can someone help me with this?
A couple of different methods mentioned here - http://www.wegeners-granulomatosis.com/forum/general-chit-chat/214-how-insert-pictures-into-post.html
Also, if you find an image on the web and right click it, select Properties and it will give the image's address which you can use.

Doug
05-18-2009, 11:50 AM
A couple of different methods mentioned here - http://www.wegeners-granulomatosis.com/forum/general-chit-chat/214-how-insert-pictures-into-post.html
Also, if you find an image on the web and right click it, select Properties and it will give the image's address which you can use.
Yeah, bunnycakes were invented, I think, in Minnesota. Isn't the bake pan a Nordic Bunnycake Pan made in the Land o' 10,000 Lakes? :)

Sangye
05-18-2009, 11:58 AM
Hey Doug, with all this renewed bunny talk, I just noticed how much your avatar resembles a wabbit. Was that intentional, or are you gradually morphing? Can we blame it on Wegs somehow?

Doug
05-19-2009, 03:11 AM
I've been trying to keep it hidden (notice Jack is wearing a hat in his avatar), but the bunny effect comes somewhere in your fourth year with WG. As you might guess, it starts with little bumps on your head. It progresses to a point (different for all weggies) where the bumps elongate to roughly twice the length of your hand, and you become what is called in the medical jargon as "hare-brained". At this point, I like to call them my devil horns, but people who know me best know I am one stage away from "hare-brained". Thought you would like to know. :eek:

Jack
05-19-2009, 04:16 AM
9

You have to face up to your future Doug ;)

Sangye
05-19-2009, 04:22 AM
I just saw this while on hold with a Customer Service person. It got me laughing so hard I couldn't communicate. The woman asked, "What's so funny?" And HOW, pray tell, do I answer that???

Doug
05-19-2009, 04:32 AM
9

You have to face up to your future Doug ;)


I have Jack, I have! But have the rest?

(p.s. I think I look rather distinguished in bunny ears. I don't know if I'll ever be satisfied with the original again! I, too, thought this was a great big hoot! On the other hand, the ears do help break the ice at sociaL affairs, since I'm male, fat, grandfatherly, and clearly not a Playboy bunny. Women might get opposite reactions when their WG ears sprout. You know men!)

Sangye
05-19-2009, 04:46 AM
Well, I confess that I'm in complete denial that one day soon (this is my 4th year with Wegs-- 3rd since dx) I'm going to develop bumps on my head and gradually turn into a Wererabbit. I think I need professional help to cope. I don't know where to turn. All around me people think bunnies are so cute, but how many of those people are facing a fate like this? If they only understood the hideous fate that awaits me, awaits all of us Weggies.

Doug
05-19-2009, 05:37 AM
http://wegeners-granulomatosis.com/forum/images/styles/fancyblue/misc/demonbunny.jpg (http://www.wegeners-granulomatosis.com/forum/search.php?do=getnew) Not one to spread alarms, but the next stage is the rat tail. Jack, with his long experience with WG, wasn't just woofing when he created this icon. Enjoy the bunny ears! Hope a cure for the rat tail is found before your tenth year (I think it is) because the only thing doctors can do for it now is to put a very tight rubber band around it, the tail, till it turns black and falls off. In the meantime, you have to deal with stores not having clothing for people with special needs. Sorry!:cool:

(Sangye- Would the rubber band treatment rate as holistic?)

Sangye
05-19-2009, 06:48 AM
Maybe hellistic-- a lesser known off-shoot.

andrew
05-19-2009, 07:06 AM
9

You have to face up to your future Doug ;)

Hahahahaha....that's the funniest thing!!! Ummm Doug...there's something on your head...

jola57
05-19-2009, 08:22 AM
I open up the new post and what do I see, Doug with rabbit ears, I snickered so hard my snorts brought in my sons to see if Mom's OK, well i couldn't tell them anything just pointing to the avatar. Both looked funny at each other and at me, I finalay told them - you just have to be here to understand.:p
I am still having a great time taking in the sights and shopping (everything is so cheap and wonderful) but mostly I enjoy having both sons together even for a little time:D

Doug
05-19-2009, 08:52 AM
All I can add is engineers aren't generally known for wit. Intelligence, yes! Wit???? (Dilbert and Jack are the exceptions, I guess.) :)

Doug
05-19-2009, 08:54 AM
Maybe hellistic-- a lesser known off-shoot.

Youch! :eek:

coffeelover
05-22-2009, 06:35 AM
Jolanta,
I am envious of your trip. I soooooo want to get out of dodge. Feeling trapped by Wegs....but after my ENT appt next week, I plan to start travel planning.
LIsa

jola57
05-23-2009, 05:06 PM
Great Lisa, I highly recomend travel as therapy. I take it easy but surprisingly have had no proplems with walking, I simply use my "gimpy" sign even here and park as close to event or historical monument as possible. My hips and ankles give me most grief, but I simply find somwhere to sit a bit and off I go again. Bathrooms are my first priority, so I scout the area first. I found that Poland, at least the cities, is very good and reasonably clean as far as bathrooms and so I have had no problems. Food agrees with me too (maybe way too much). I take my regiment of pills in the morning, buy water bottles and chug along while driving or visiting and all seems to be fine. Onto UK next Monday.:D

Doug
05-29-2009, 12:48 AM
YouTube - Bodo Wartke | Ja, Schatz (http://www.youtube.com/watch?v=4KQOHAWyhCw)


Just when you thought it was safe to step back and not trip over a bunny....

It's in German, but just watch it a little while, and you will be in awe! I had no choice but to share this with you. Luce: You started something big!:rolleyes:

(The essence of it is the guy's tired of being treated like dirt by his wife, he won't take it anymore, and he's planning to murder her with an ax while she sleeps. Humorous, I guess!)

Luce
05-29-2009, 02:56 AM
Oh dear me... all I can say I wish my bunny could play the piano that well - she stumbles over Twinkle Twinkle Little Star.
I guess we all have our talent but music isn't my rabbit's lettuce leaf.

Jolanta, I hope the public bathrooms here are as good as Poland's, but I fear you may be somewhat disappointed.

jola57
06-01-2009, 09:06 AM
Luce, you are right - ugh London's loos are the worst. I visited Plymouth, Durham and York. I adore York, such history from Romans to Vikings to Normans, 17 century battles and Victorian era. I could spend 2 months and not get enough. Before leaving we had a truly York type brunch with yorkshire pudding, yummy. We're back in London and already I want to go. Very dirty and polluted. But the museums should make up for any inconvenience. I'm staying at the Best Western Cromwell until 7th. I get tired sometimes and my son must walk slowly but otherwise all is OK. Just my feet get wonky but with my cane I'm doing good.

jola57
06-06-2009, 10:29 AM
Ah the joys of British Museum. I could happily spend more than one day but allas indigestion from hell cut it short:eek:. Also I think I am getting a cold, though I hope it is only allergies - those I can cope with. It is back to Canada for me on Sunday. Hopefuly I will feel OK tomorrow and go the Harrods.:D