View Full Version : News of Jack
You are right. Very few posts today! What have I done? :scared:
You haven't been posting enough so volume is down, :wink1:
LisaMarie
01-26-2011, 07:04 AM
I'm glad they caught that, Lisa Marie. I know you want to be off oxygen (I sure did-- what a major pain) but you kinda need it to survive.... :wink1: Do you still need it in the daytime?
I still need O2 during the day if i drive or go out to the store or at home if I am going to do more than just sit around and if i am lucky enough and willing to live on the edge i go out to dinner with the family and wear it ....i still have to wear a mask when i am out and about...feb 21 can not come soon enough...Mayo here I come:razz:
elephant
01-26-2011, 08:42 AM
LIsaMarie, Mayo is waiting for you!
chrisTIn@
01-28-2011, 02:36 AM
Too Many Posts
...I can no longer keep up with all the new posts. I used to be able to read them all and follow members progress...
...I am taking a break and trying to catch up on some reading. I have an unopened book next to me that has been there since Christmas!
Hope everyone is as well as they can be and that you are all about to have one of the Good Days! :thumbsup:
Thanks for your good wishes Jack!
Have you been reading already in your unopened book? :wink1:
Hope you have a good day too.
:hug1:
Having a really bad day today. It was all I could do to get up and get dressed and this took me hours. No energy at all! :sad:
It is days like today that make me wonder where all this is heading and how quickly, but I expect things won't get worse and I'll probably be reasonably OK by this evening. I was supposed to be doing a couple of small jobs today and these obviously won't happen now. I'll just sit and watch TV instead and perhaps have an hours sleep.
Damn! I hate this! :mad1:
renidrag
02-06-2011, 02:22 AM
Jack: We in New England have had almost one snowstorm each week since Christmas. I can do very little to be of help to Debbie, who along with her son shovels and spreads salt and uses the snow blower. Last year I could do nothing, this year I go out and direct, (very quietly). I was celebrating yesterday being able to put on my own socks and tie my own boots due to recent weight re-gain (and loss). Feeling better I decided I could in fact scale that five foot snowbank and help my wife rake snow off the shed roof. How wrong I was and I ended up in the house, gasping until the emergency inhaler took effect. Just Wegs reminder of the new normal changes every day, every damn day. Carpe Diem whatever it brings. Guess I'm saying I can understand how you feel.
Dale
Dale know were you are coming from decided i would do genral clean up through house before i op this week . big mistake took days to recover :w00t:
Jack hope things get better through the day for you take care and rest do you watch the rugby always puts me in a good mood :thumbup:
Sangye
02-06-2011, 03:50 AM
Aww, Jack and Dale I'm so sorry. This just stinks. I'm with you today--can barely stand long enough to brush my teeth! Some days it's harder than others to deal with the physical constraints. And some days the physical constraints are just greater. I hope you both have a surprise rebound as the day goes by. :hug2:
I really hate to think this is what I'm looking forward to....
For the past two months I have felt fantastic. This is the best I've been since May '08 and I hope it continues...
First rheumy appt at SLC Vasculitis Center is tomorrow... Whahoo!
Sangye
02-06-2011, 05:46 AM
There's no reason why you should feel doomed to go through the same thing, vdub. Plenty of Weggies do just fine. I've never-- in 4.5 yrs since dx-- had 2 months where I felt even decent much less fantastic, so that bodes very well for you.
I still keep thinking that the folks at SLC might tell me that I don't have WG at all, but I'm not sure how that can possibly happen. The presence of the granulomatous hypophysitis is pretty unmistakable. Maybe my weg's will stay limited to the brain. I don't know -- all wishful thinking I suspect....
On 1Jan11 I had to go off the mtx in order to have a knee surgery. I was supposed to go back on mtx on 1Feb, but I have stayed off. I'm thinking it might give the rheumy a cleaner shoot at seeing something in my lungs, kidneys, whatever, but not sure if that is flawed thinking or not. I figured an extra week of mtx wouldn't hurt anything.
I would credit my "feeling fantastic" to being off the mtx, but I started feeling good about a month before going off the mtx. My endo increased my steroids by 10 mg (now 30mg/day), so that's probably the reason.
Geoff
02-06-2011, 06:15 AM
I think this just goes to show how individual this disease is to all of us. We all react differently to various meds and at times there is no rhyme or reason. I have learnt to 'go with the flow' and not to expect anything apart from the unexpected!! I have been 'flying' since just before Christmas and made the mistake of fooling myself I had this beat, then two weeks ago it was like falling off a cliff. I was gutted. I felt dreadfull. Just to say Jack that hope springs eternal. We can all smile when the 'good days' appear, its how we cope with the bad ones. My thoughts and best wishes go out to you; on the positive side, lets hope we have seen off the worst of the winter and that Spring is just round the corner...Time for a beer in the garden? Oh yes and I am better, just returned from Town with my daughter and Fiance as we get ready for The Wedding later on this year. Its giving me a focus, and a pain in the wallet!!
Sangye
02-06-2011, 06:45 AM
vdub, I don't think you should stay off the mtx. If anything, going off it shortly before your specialist appts clouds the picture. Mtx takes weeks to start working and if the Wegs is active you can lose time waiting for it to kick in again.
It is now 7:15 in the evening and I'm feeling much better and less sorry for myself. Still not great, but not too bad. Tomorrow will be a better day! :smile1:
vdub - as Sangye has said, don't read across from other's condition to your own. There are no two stories the same with this disease and no way to predict which direction it may take or how drug side effects may change your life. I have had 15 very good years and had I been able to manage on less drugs I would perhaps still be well now. Who can say? I may have had a major flare instead and suffered that way.
Sangye
02-06-2011, 07:28 AM
SO happy to hear you're doing better, Jack. Makes my day.
I must be on the other end of the seesaw...going downhill all day. You know, the day after the rtx and yesterday I wasn't feeling all that bad. Very shaky but I could still function around the house a bit. I thought, "Maybe I've just toughened up since last time." But today I'm totally flattened and worsening by the hour. This is what is was like. Even though I know I'm tougher.
It can be hard work having to be tough! I'm amazed that we all keep getting through this crap even after being hit time and again. You have suffered more than most Sangye, just keep in mind that you have been through this before and can do it again. All things must pass.
Sangye
02-06-2011, 07:45 AM
Thanks Jack. When I did rtx the last 2 times I didn't keep daily notes like I do now, but I did make general notes about the treatment. I'm hanging onto the words I wrote: "Can really tell rtx started to work after 6 wks. Increased energy, decreased pain." Just 39 more days.... :unsure:
marta
02-06-2011, 07:56 AM
Jack, glad to hear you're feeling better. I was concerned when I read your earlier post. I tell my friends that this Wegener's thing is so inpredictable and I laughed when my old doc would ask me "How do you feel right now". I thought that was the craziest question, and showed me that he didn't really get this disease. What I feel now can be completely different from what I felt an hour ago or what I'll feel an hour from now. It's kinda like the bunny hop - two steps forward, one step back.. hopefully you have more forward than back.
Sangye, bummer. I'm sorry this hits you like this. At the very least you've been here before and know that it will pass and make things better in the long run. I know this doesn't make it any better, but it's a thought that can pull you through the grossness. I don't know, I might be singing a different tune when I'm in the thick of it.
As for being tough. I feel like such a whimp since this thing. I was having a 'miss the old days' moment the other day. I miss normal. I miss being tough and going out for a 25km run. I miss getting on my bike and spending the afternoon flying through the woods on it. I miss skiing thousands of vertical feet in a day. I miss being able to go to work, come home make supper, clean up, play with Hana, and staying up and hanging out with Brian and still having plenty of energy to spare. I miss being the old strong/tough Marta.
I learned quite early that Wegener's disease is like a roller coaster ride, up and down, and nothing stayed the same for long. Lately the ride has been getting tamer and I start having fantasies, or dreams that it might actually level off and stay the same for awhile or better yet improve. I remember the words of my colleague with Wegener's, in his experience he said the " first year or two are the hardest" but then things get better." I was diagnosed nine months ago and this is about the best things have been for me since diagnosis. At thanksgiving time I was feeling pretty good and getting optimistic about Wegener's disease finally getting under control and thinking I could stay out the hospital for awhile. I went in my routine blood work, fainted two times, and ended up in hospital for three days due to dehydration caused by bladder infection from Cytoxan. Then I realize silly me for thinking things are continue going along fairly well. Overall things are better since diagnosis and my rheumatologist is very pleased with my miraculous recovery so far, but I realize things can change very quickly and the bottom fall out with another new crisis. I try to just take it day by day and focus on what is going well today or how lucky I am do be able to do what I can do now since it was much worse a few months ago. If I think about what I have lost in functioning and health, I get too depressed and down to do anything. Then for me a nap is best way to deal with these feelings. I empathize with the pain and distress from feeling down that others have reported in above posts. I feel sad that others too have to have such feelings. Hope things get better for all of us. time for group hug!:hug3:
Sangye
02-06-2011, 08:34 AM
Marta, I'm so sorry to hear you're struggling with the grief aspect. I think you're finally getting good care though, and things will improve quickly for you. I wanna see you flying through the woods, too. I've actually had a few dreams lately about swimming, running and hiking. Been a long time since I even dreamed about it.
marta
02-06-2011, 08:42 AM
Thanks guys, but it was a short lived mourning period. I get those very rarely and they last a short time. I actually think I've been quite lucky on the psychological/emotional side of things - considering the situation and pred and all. I do get them though and I had one. On the positive side of things, I got a glimpse of my reflection yesterday where it was a split second and I saw a reflection of the old, skinny cheeked Marta looking back. I know it sounds vain, but what it did do is give me glimpse of the possible reality ahead, feeling and looking 'normal'. I have this unrealistic fantasy that one day I'll wake up and everything will be back to normal - miraculously, overnight - but I know that it can get close to normal in a longer period of time. I just have to be patient.
Baby steps forward.
you can lose time waiting for it to kick in again
The decision to stay off the mtx was only a difference of 4 days from what I had to stay off for the knee operation, so I didn't figure it would be to big a deal.
One thing I am concerned about.... I have been feeling great with the exception of pretty nasty, almost constant headaches. IBU, aleve, etc doesn't seem to help much. Tylenol T3 with codiene does help, but seems to be getting less effective. Last night I took an oxycodone to kick the headache. Endo did a MENs test to check for a thyroid tumor (believe that's what it was checking), but it came back ok. The headaches feel like what I had prior to them finding the pituitary granuloma. Hope I'm not getting another. Brain surgery is no danged fun.....
But, otherwsie, things are great and I'm going to enjoy the moment! :thumbup:
Psyborg
02-07-2011, 10:34 AM
What medications are you on Vdub? I had nasty headaches on CTX, I was attributing things to the WG that was actually the medication. Didn't realize it until I switched to MTX and the symptoms went away.
I was wondering if it wasn't a side effect from the drugs, too. Other than mtx, I'm on cortef, levothyroxin, desmopressin, plus a handful of common stuff like testosterone, B-12, folic acid, Vit D, celexa, and abmien. Desmopressin has no known side effects. Cortef and ambien are the only ones with headaches as a possible side effect.
I guess side effects could come and go, but if not, then I'd have to rule out a side effect as the headaches seemed to have just restarted last Novemeber after a 6 month period of no headaches.
jola57
02-12-2011, 07:18 PM
Marta, for months after starting on high dose pred and filling out my moon face, I would not look at any mirror and when I did a complete stranger looked back. It took me over 3 years to accept what is and actually start to agoin enjoy having pictures taken with my kids and family. I even posted my the way i was album to remind myself of what I looked like. For me too now and again the new normal and new me su*%.
Geoff, I am petrified of falling back into illness after responding so well to the treatment. I am sorry you feel worse and hope it is just for a very short time
I've been having quite a few rough days recently so fell back on my last resort before going to bed and took an extra 10mg of pred. :thumbdn:
Today I feel really good!
I wish I could use it as a long term solution, but the damn stuff is already killing me so the trade off just is not worth it. By the way, none of my problems seem to be Wegener's symptoms, so I'm pretty sure that I'm not flaring. I have an appointment this week so we'll see what they have to say. Probably less than I know already I expect unless my bloods show something.
I'm then off to my sister's house for next week while my wife and daughter go to Tenerife. Jaden will be coming with me. Not sure what she will think of that!
Geoff
02-15-2011, 12:40 AM
Yes Jack, Pred is a bitter - sweet pill and no mistake. What sort of time frame before you notice it kicking in?
By the way, best of luck with Jaden next week. We had our sons cat stay with us over Christmas and then after a couple of days we went to stay with our daughter! The poor cat didnt know if it was coming or going and we had to dig her out from under the bed when it was time to 'go home'. Funnily enough, since she has been reunited with my son and his wife they have noticed an improvement in her scatty behaviour. Work that one out!
Sangye
02-15-2011, 03:05 AM
Jack, I'm sorry you haven't been feeling well. Glad you've got an appt to sort it out. Nice to hear you're going to your sister's for a bit-- you always have a good time there.
Hi Jack glad you are feeling better today and you enjoy break with your sister :thumbsup:
LisaMarie
02-15-2011, 04:06 AM
Jack
Enjoy your Holiday and hopefully your little kitty will do well...glad your are feeling better
Hopw the ulgy WG dog is not rearing It's ulgy head
Have a great dayu
elephant
02-15-2011, 05:17 AM
Jack, so happy to hear you are off to your sisters house. She will cook some good food for you!
coffeelover
02-15-2011, 08:12 AM
Jack,
I AM THINKING OF YOU AND WISHING YOU THE BEST!
lisa
Damn! It was pay back day today! :sad:
It is now coming up for early evening and I'm only now starting to be able to function again. Never mind, yesterday was a good day and sometimes you need a little quality back in your life even if there are consequences.
Sangye
02-16-2011, 04:25 AM
Grrr.... how frustrating, Jack! Take it easy today and let your body find its center again. It will. Hugs to you.... :hug2:
Thanks Sangye.
I know there are plenty of you on here who know how it feels.
Brooke
02-16-2011, 06:53 AM
Sorry you are not feeling well Jack. What are your symptoms?
Bad days for me mean stiff legs, lots of bowel trouble, zero energy, lung congestion, tinnitus and a bit of a head ache. Nothing very specific, just not well and unable to do anything. It always gets better before the day is out so it is just a matter of waiting for the next change.
Bad days for me mean stiff legs, lots of bowel trouble, zero energy, lung congestion, tinnitus and a bit of a head ache. Nothing very specific, just not well and unable to do anything. It always gets better before the day is out so it is just a matter of waiting for the next change.
Does napping or resting help you? Some times it works well for me, other times I had to force myself to get up and get moving to feel better. the problem is to figure what is going to work best for me today. Has anyone figured this riddle out?
Weird isn't it?
On a normal day, my policy is to get up as soon as possible and I tend to improve from there on. If I hang around in bed, it becomes more and more difficult to get up and I just feel worse.
On a bad day such as today, I doze in the chair all the time, but I'm better if I can return to bed for a few hours. I could not really do that today.
chrisTIn@
02-16-2011, 10:02 AM
I hope you'll feel better soon, Jack?
Are you at your sister's house?
Say hi from me to Jaden! :smile1:
Going to my sister's next week.
Jaden says "Meow!"
http://i25.photobucket.com/albums/c56/1955diesel/cat1.gif
Sangye
02-16-2011, 10:28 AM
LOL I'm so glad you adopted her. She looks so different already. :tongue1:
Back from hospital and all my bloods are stable, next appointment in 3 months. I had to wait for an hour so that was not great, I've been doing better than that recently.
Sister's house tomorrow. Jaden has a new wicker travelling basket, but I'm expecting that she will meow and fuss for the entire journey. She has already told us that she doesn't think much of it even though the reviews from other owners say that their cats use it as a bed at home. Some chance! Jaden prefers a proper full size bed.
Geoff
02-19-2011, 02:20 AM
Congratulations Jack on your Bloods. Hope your week goes well. Dont you just love a cat with attitude!!
Sangye
02-19-2011, 02:25 AM
That's wonderful news about your labs, Jack. Good to get a clean bill of health before heading to your sister's.
I hope Jaden enjoys the trip as much as you. :smile1:
Great news Jack enjoy your trip :thumbsup: DEEx
elephant
02-19-2011, 02:52 PM
Good news Jack, and eat alot of good food!
Hi Jack - Hope I'm not too late to wish you a lovely time staying with your sister - and I hope Jaden enjoys it too! Take care.http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)
Fran
LisaMarie
02-21-2011, 04:22 PM
great news on your labs...have fun at your sister's.. hope jaden enjoys her holiday too...ps i love those honey bars :biggrin1:
Jaden is settling down now so we should have a good week.
I think I may have also made a breakthrough with improving my diet! One of my main problems at the moment is that I am malnourished, but the high energy supplements I have been given by the health service were so disgusting that they made me feel even worse. This put me off the idea altogether and I have not tried them again. However, things are getting so bad that I have to do something and I hit on the idea of buying some of the commercial products used by body builders etc. It is such a big business that they can't be that nasty to take! I bought some milkshake yesterday and it is really quite nice! Not only that, but having a couple of them each day will double my calorie intake and add some much needed minerals and vitamins! I shall investigate what else is available. :biggrin1:
elephant
02-22-2011, 01:16 AM
Jack, which milk shake brand did you use?
Sangye
02-22-2011, 04:13 AM
Oh man, Jack I wish I'd known you didn't know about those! I feel so bad.... They are very rich with protein--needed to repair tissue and build muscle. It'll make a huge difference for you. Drink as much as you want-- no limits! :thumbsup:
Going to stick with the very well known ones first because I'm more interested in the taste and texture than anything else. The ones I bought were Complan Chocolate flavour. I will also try the one from Nestle. The less commercial, body building and fitness side of the business seems to be practically without limit. There must be a lot of money to be made!
By the way, this is mainly caused by my Pharyngeal Pouch which has become worse recently and is stopping me from swallowing almost anything other than liquids. I am not really up to undergoing the operation required to put it right and the success rate is far from 100% anyway.
Sangye
02-22-2011, 04:40 AM
It is very big business. Some ingredients to avoid are DHEA, any type of "growth hormone factor," and blue-green algae. Also, as long as you tolerate dairy okay, whey protein is a better quality protein than soy protein isolate.
Hammy8241
02-22-2011, 04:49 AM
much as you want-- no limits! :thumbsup:
Im sure that also goes for Chocolate bars too! ( they can always be melted to ease the passage, although with me it does not touch the sides!):biggrin1:
Enjoy your break Jack
Daggar
02-22-2011, 07:08 AM
Be careful Jack.... I used to body build and coach hockey where protein powders/drinks were the "norm", however, recently a number of these drinks have come under fire. Studies are indicating kidney and liver problems from prolonged use due to some of the ingredients -- creatine for one. For what it's worth I suggest blending fresh or frozen berries (or any fruit you like) with bananas, soy or skim milk and "pure" whey
powder from a store like "earth's harvest" and try to avoid anything "commercial" .... cheaper and less toxic in the long run. Oat bran / prune juice can also be tossed in there once and awhile without ruining the taste -- hardly detectable!
There are meal replacement drinks on the market but once again you're dealing with added preservatives and ingredients to try and mask the taste of the supplements. Berries can do that VERY WELL in a homemade shake.
Thanks Daggar. That is something I'll bear in mind. I do tend to associate highly advertised stuff with additives and I used to eat very little processed food, but in the short term I just need something that tastes good and has lots of calories.
Sangye
02-23-2011, 02:55 AM
I agree with you, Jack. You are so malnourished that the need for calories and nutrients is much greater than the concern for quality of food. (A McDonald's hamburger is better than nothing if a person is starving) Over time you can improve on it as you said.
Daggar
02-23-2011, 04:39 PM
Yes, those homemade shakes can contain a "whole" lot of calories if you want.... protein as well. Only takes a few minutes to blend it up.
My quick fix for calories/protein and a treat -- chocolate covered almonds..... nothing better:flapper:
Brooke
02-24-2011, 05:01 AM
mmmm McDonalds Hamburger!!
Couple of problems with that one -
I'm vegetarian.
I could not swallow something like that anyway.
:sad:
Daggar
02-24-2011, 11:54 AM
Do you have those "ensure" drinks at your local grocers? Most of the hospitals use them for "meal replacement" or for those having difficulty with solid foods.
They've got a lot of vitamins/minerals/calories for that purpose... you may have to mix them with chocolate milk or something to mask the taste a bit.
I know they are a far cry from a good home-cooked meal but its one way to get nutrients/calories quickly.
Is the swallowing problem from WG?
Do you have those "ensure" drinks at your local grocers? Most of the hospitals use them for "meal replacement" or for those having difficulty with solid foods.
They've got a lot of vitamins/minerals/calories for that purpose... you may have to mix them with chocolate milk or something to mask the taste a bit.
I know they are a far cry from a good home-cooked meal but its one way to get nutrients/calories quickly.
Is the swallowing problem from WG?
As part of my treatment I got one of these with every meal for a couple months to gain back the weight I lost from the Wegener's disease. I liked the strawberry flavor the best but chocolate and vanilla weren't bad either. It was effective or maybe the high dosage of prednisone and six meals a day plus snacks, and soon I was up 50 pounds very quickly and the lab work indicated no symptoms of malnourishment.
LisaMarie
03-02-2011, 02:08 AM
Ok Jack are you and Andrew on some wild adventure together....Hope you are doing well....Have not seen a post from you in a few days
Jack did say awhile back that he would be taiking time out on occassion when there was alot of posts . he wanted to read some of his books :smile1:
last saw a post from him saturday , Hope you are ok Jack DEEx
Sangye
03-02-2011, 03:30 PM
Jack is at his sister's this week, remember? She's probably loading him up with healthy food, so he can't type. Either that or he's spending all day trying to lure Jaden out from under the bed!
Hi all! :tongue1:
I have been busy playing with computers.
I bought myself a NetBook to replace my old laptop. Just the same performance, but 1/3 of the weight and size. I then gave my laptop to my sister so that she can design the cards that she makes while sitting in her favourite chair. As you can imagine, this has all required a lot of messing around and installing new programs to get things the way I wanted.
I'm doing good with the build up milkshakes and trying to have two every day. It has got to be doing something beneficial. :thumbup:
Good to hear drinks are working for you Jack :thumbsup::thumbup:
LisaMarie
03-03-2011, 06:31 AM
We missed you....how is Jaden?
Sangye
03-04-2011, 03:55 AM
Great to hear you're getting in the milkshakes, Jack. It sounds like you're having a nice time with your sister. :smile1:
chrisTIn@
03-04-2011, 11:46 PM
I have been busy playing with computers.
I bought myself a NetBook...
Hey Jack!!
You seem to have a good time, with the present that you bought yourself.:razz:
You deserved that, I think... :wink1::thumbsup:
jola57
03-05-2011, 06:42 PM
How do you like the little keyboard?
Keyboard is not an issue at all as it goes right to the edge and so is near full size. The 10" screen is not a problem either. However, I did use my daughter's laptop the other day and it was like having a TV on my lap! The massive screen and keyboard were quite a luxury.
The main advantage of the netbook is its extreme light weight and very good battery life. This makes it very portable and much easier for me to use.
elephant
03-06-2011, 04:48 PM
Glad the keyboard is working for you. I just had a large chocolate milk shake last night, so good!
chrisTIn@
03-07-2011, 01:35 AM
Light weight and good battery life are important features indeed!
When I'm not at my desk I use a laptop that's kind of heavy, and becomes very warm because of ventilation issues.
I 'm also considering to buy such a cute little netbook :love:, but I think I 'll just wait for a while.
My daughter is a great 'fruit company' -fan, and she wants me to buy a 'Tablet'- or 'Pad'-computer.
Those are user-friendly indeed. I haven't descided yet.:unsure:
I don't like the touch screen keyboard that Pads have and if I added a USB or Bluetooth keyboard I would just end up with a netbook in two pieces! :unsure:
Gratuitous picture of Jaden who is starting to go out more now that the weather is improving.
Meow!
http://i25.photobucket.com/albums/c56/1955diesel/DSC01828.jpg
freakyschizogirl
03-23-2011, 06:52 AM
Awww Jaden is one cute cat. Looks very much like my dad's cat Bang Bangs (dont ask!). I'm thinking of getting a Netbook but it looks so small to me!
Brooke
03-23-2011, 08:48 AM
Awww cute!!!
pberggren1
03-23-2011, 01:18 PM
Jaden is very beautiful!
elephant
03-23-2011, 01:28 PM
I love Jaden's pose!
Sangye
03-23-2011, 02:21 PM
LOL Happy that she granted you such a nice photo. :wink1:
Palmyra
03-23-2011, 02:38 PM
Gratuitous picture of Jaden who is starting to go out more now that the weather is improving.
Meow!
http://i25.photobucket.com/albums/c56/1955diesel/DSC01828.jpg
That is one beautiful cat, and in the sunshine no less....be proud Jack, be proud.:biggrin1:
jola57
03-24-2011, 03:24 PM
just look at that shiny black coat
chrisTIn@
03-25-2011, 04:57 AM
Nice picture Jack! :smile1:
Some of you may know that I suffer from a pharyngeal pouch that is a major factor in my eating problems and is resulting in malnutrition. The surgery required to treat this has not produced particularly good results in the past and considering my general health condition the anaesthetic and the operation itself presented quite a risk.
However, things change with the years. I have now reached the stage where I can only eat a very limited range of soft foods and it has started to cause me real problems. But the operation choices have changed too and the latest endoscopic method is giving very good results with lowered risks and faster recovery. So I have decided to get a referral and find out if I would be a suitable candidate.
I must say that the idea of volunteering myself for surgery is a scary prospect. I used to approach these things with complete faith, but over the years I feel I have flipped the coin too often and I have also seen that things can go very badly wrong. Never mind! I think this is the right decision to make before it gets even worse so I'll see my doctor within the next week or two.
I'm sure with you on the coin flip.... Over the past 3 years I have had 5 surgeries.... I'm going to be a lot more careful to subjecting myself to that in the future, even if the docs say I don't have a choice. Super good luck to you on your decision! Please keep us posted....
Some of you may know that I suffer from a pharyngeal pouch that is a major factor in my eating problems and is resulting in malnutrition. The surgery required to treat this has not produced particularly good results in the past and considering my general health condition the anaesthetic and the operation itself presented quite a risk.
However, things change with the years. I have now reached the stage where I can only eat a very limited range of soft foods and it has started to cause me real problems. But the operation choices have changed too and the latest endoscopic method is giving very good results with lowered risks and faster recovery. So I have decided to get a referral and find out if I would be a suitable candidate.
I must say that the idea of volunteering myself for surgery is a scary prospect. I used to approach these things with complete faith, but over the years I feel I have flipped the coin too often and I have also seen that things can go very badly wrong. Never mind! I think this is the right decision to make before it gets even worse so I'll see my doctor within the next week or two.
It might be good to get two consults on something that serious. Surgery is serious business but sometimes there are no other good choices. The good news is that in general advances in surgery techniques have made many procedures easier and safer. There are also operations today that couldn't be done 10-20 years ago so good luck with consults.
pberggren1
03-30-2011, 10:23 AM
I hope this works out for you Jack. I am sure you have thought long and hard about this and have done a lot of research as all we Weggies tend to do. I am sure you will make the right choice in the end.
Daggar
03-30-2011, 10:27 AM
All our best Jack! It sounds like the "nutrition" issue is becoming serious enough to take the risk.... hope it all works out!
elephant
03-30-2011, 12:26 PM
Good luck Jack, glad you feel good about your decision.
coffeelover
03-30-2011, 12:54 PM
Jack! I wish you the best.
DuaneHart
03-30-2011, 12:59 PM
Good luck Jack! Our thoughts are with you and am sure everything will work out for the best.
Sangye
03-30-2011, 03:13 PM
I think it's great that you're going to check it out, Jack. You'll be so much stronger when you can eat properly. :smile1:
Good news Jack I hope they can work something out for you DEE x
renidrag
03-30-2011, 08:04 PM
Good luck Jack
Dale
LisaMarie
03-30-2011, 11:43 PM
Best of luck Jack ...will keep you in my prayers...hope this is the right proceedure for you...we gotta get you a little thicker....are you still drinking the shakes?
Thanks for the overwhelming response everyone. :smile1:
I'm still going with the shakes which must be doing some good although I can't say that I've noticed. I've just got to summon up the courage / motivation now to get the referral and follow it up with all the hassle of hospital visits. I'll be going to the hospital that treat my Wegener's for this one even though the local place just down the road could probably do it. Best to be in the right place just in case!
Brooke
03-31-2011, 01:19 AM
Good luck to you Jack :thumbup:
I've got a lot of really bad stuff happening this morning, but I'm not going to tell you about it or you'll nag me about going to ER. I think I've got it under control and it is not Weg's symptoms, but still scary as hell:scared:! I'll let you know which way it goes, or not as the case may be. :unsure:
Not going to nag just take care of yourself DEE x:hug1:
chrisTIn@
04-04-2011, 10:20 PM
I think I've got it under control...
Hopefully it stays that way.
Take care indeed, Jack!
Keep us posted if possible...
Brooke
04-05-2011, 12:53 AM
Jack, wish you would tell us what is going on. I hope you get better fast!
LisaMarie
04-05-2011, 01:01 AM
:sad:Jack we only nag you because we care and Sangye has taught us well...We gotta take care of each other....please keep us posted... I'll send you some crunch bars.....tempting uhhh:biggrin1:
I'll send you some crunch bars.....tempting uhhh:biggrin1:
I've just eaten one, it helped a lot! :thumbup:
OK, I seem to be getting better so I'll let you know what happened.
I cough a lot. Far more than most of you will appreciate I think and when it gets too bad or turns to infection, I change my antibiotics for a while and get it back under control. It has been getting quite bad during the past few days and last night I think I woke up every hour to have a coughing session. I was just waking up and started to cough again, but this time I could tell that it was more liquid and there was lots of it - it was pure blood! Oh dear, that's not good!
I worked out that this was coming from the area of my throat rather than lungs because it would drip out of my mouth (sorry to be gross) if I leaned forwards. Anyway, every time I decided that I would have to get myself to the ER it would stop, but then start again if I had a coughing session. I did not want to spend time in hospital, so I took the stupid option of staying at home with the promise to myself that if it had not cleared up by 10 o'clock I would go to hospital.
Well, it has cleared up. Still quite a bit of blood in the mucus, but it is old stuff and getting less all the time. I guess that I must have burst a blood vessel in my wind pipe because other than all the blood I felt fine. One of my better days if anything.
OK, you can nag now. I wanted to get it off my chest (so to speak ;) ) earlier, but was not in the mood to be told what I already knew. Thanks for the support. Panic now over. It scared the hell out of me.
Sangye
04-05-2011, 01:32 AM
I've got a lot of really bad stuff happening this morning, but I'm not going to tell you about it or you'll nag me about going to ER. I think I've got it under control and it is not Weg's symptoms, but still scary as hell:scared:! I'll let you know which way it goes, or not as the case may be. :unsure:
I know you'll make the best decision for yourself so I'm not gonna nag you. Not yet, anyway. :wink1:
I hope whatever it all is, you can get it under control easily.
Sangye
04-05-2011, 01:35 AM
Ah! I see you slipped in an update while I was leaving my last reply. I agree that it sounds like a burst blood vessel that has healed itself. I think you made the right decision.
Brooke
04-05-2011, 02:26 AM
Yikes, that does sound very scary!! I'm glad it is getting better, I hope you can get some good sleep. Coughing sucks.
I switched antibiotics this morning and I seem to be coughing much less already. Not sure they can act that fast, but I'm not going to question it too much.
Thanks for the considered response Sangye. I feel much better knowing that perhaps my action was not quite so stupid. :)
Good to hear things are settling , hope you have a bett:thumbsup:er night to night. take care
Chris G
04-05-2011, 03:14 AM
Oh my gosh, really!? Just a burst blood vessel? That's terrifying! I'd have called 911. I guess by your "wait & see" reaction, you must be somewhat used to this kind of thing. Since Sangye didn't freak out, I'll assume you two know best, and you have things under control. I hope your new antibiotic does the trick on your cough. Be well.
I hear stories like yours (and so many others on this site) and I feel quite lucky that I haven't hit that point yet. I'm not sure I would have the tenacity that you seem to have.
I had a bad episode 2 nights ago when I started feeling quite poorly and I thought the cause was because I had forgotten to take one of my required rounds of medicine, despite having all sorts of reminders and such. Anyway, I did some research on how I felt (basically Addisons) and it seemed to add up, so I did some more research as to what was worse; an overdose or an underdose. The overdose was definitely the better option, so I took the pills that I should have taken (or might have already taken) 3 hours earlier. Then went to bed to sleep through it. Worked out AOK...
Oh my gosh, really!? Just a burst blood vessel? That's terrifying! I'd have called 911. I guess by your "wait & see" reaction, you must be somewhat used to this kind of thing. Since Sangye didn't freak out, I'll assume you two know best, and you have things under control. I hope your new antibiotic does the trick on your cough. Be well.
Me too. I would have freaked since coughing up blood again is probably my biggest fear about Wegs. I got anxious when it just came out of my nose when my sinuses got infected. Must of have a been real night mare but glad it got better.
Sangye
04-05-2011, 02:25 PM
LOL Newbies. :lol:
jola57
04-05-2011, 04:34 PM
Oh Sangye you crack me up. And to all the newbies :hug1:
:huh: Isn't coughing up blood just a normal part of everyone's life?
I did have the thought at the time that if I was to see someone in the condition that I was in I would be wondering what their chances were!
chrisTIn@
04-05-2011, 10:24 PM
It's good to read here that you 're allright again!
Hope you won't have to cough so much again, Jack. :unsure:
Sangye
04-06-2011, 01:49 AM
I did have the thought at the time that if I was to see someone in the condition that I was in I would be wondering what their chances were!
ROTFL :laugh:
:cool1::thumbup: Jack DEEx
Well I've been really stupid again. :(
I won't go into details because I can't believe that something I always knew was a bad idea suddenly seemed to be the right thing to do. Anyway, I put my full body weight onto my arms at an awkward angle and my sternum went Pop and hurt like hell!
I called my wife for help and we had another good experience from the ambulance service who arrived within 5 minutes and carried me off to hospital. They soon came to the conclusion that nothing was broken and that I just had torn cartilage. I spent a sleepless night high on Morphine, had an assessment of my capabilities and was taken back home where I am now. I can just about manage to use the bathroom and move from arm chair to wheel chair, but not a great deal more. Deep breathing and coughing are a real nightmare.
I wonder how many weeks this is going to take?
Hammy8241
05-15-2011, 05:15 AM
Ohhhhh. Jack, Jack, Jack!!
We really are going to have to have a Cotton Wool collection and get you wrapped up.
Hope things improve soon.
delorisdoe
05-15-2011, 05:17 AM
Jack...you need to consult a stuborn man specialist. Regular wives children and doctors are not capable of treating someone as stuborn as yourself. Please find the nearest stuborn man clinic in your area. There are so many possible injuries you could sustain as a result of not being treated properly for your stuborness.
I mean ouch...hope you are better and be more carefull
renidrag
05-15-2011, 05:19 AM
Take it slow Jack. I hope your cough is better also for this does not make for a good combination. Did you fall? (My worst fear) Best to you,
Dale
Sangye
05-15-2011, 05:45 AM
Oh no.... Jack I'm so sorry. That must be extremely painful. It might take awhile to heal. :sad:
(Gentle) hugs to you. :hug2:
pberggren1
05-15-2011, 06:03 AM
Oh Jack! You are not silly or stubborn. It can happen to anyone. I hope it heals soon.
chrisTIn@
05-15-2011, 06:34 AM
I wonder how many weeks this is going to take?
Not too many, I hope...
Get well soon Jack! :thumbup:
Sorry to hear about your accident. Is this related to weak connective tissue from all the prednisone? I was warned to be real careful about tearing a tendon when i was on a certain antibiotic plus prednisone. Is that part of the problem for you now?
Hope you are able to sleep and heal without too much discomfort but it sounds like something very unpleasant to experience.
Best wishes for quick recovery.
Well I've been really stupid again. :(
I won't go into details because I can't believe that something I always knew was a bad idea suddenly seemed to be the right thing to do. Anyway, I put my full body weight onto my arms at an awkward angle and my sternum went Pop and hurt like hell!
I called my wife for help and we had another good experience from the ambulance service who arrived within 5 minutes and carried me off to hospital. They soon came to the conclusion that nothing was broken and that I just had torn cartilage. I spent a sleepless night high on Morphine, had an assessment of my capabilities and was taken back home where I am now. I can just about manage to use the bathroom and move from arm chair to wheel chair, but not a great deal more. Deep breathing and coughing are a real nightmare.
I wonder how many weeks this is going to take?
Well, I'm pretty sure something like that is bound to happen to most any of us. I'd almost think a broken bone or two would be better than torn cartlidge. I hope it doesn't take to long to heal, but I'm kind of a realist and suspect it is going to heal a lot slower than anyone would like. Please keep us informed.
Oh dear Jack we will have to put off the Whitby slopes again !!! Take care of you DEE x:hug1::hug1::hug1:
Chris G
05-15-2011, 11:36 AM
Ohhhh, that sound SO painful! I hope they gave you good meds to control the pain (when you aren't coughing that is). Gosh, I hope it heals fast!
marta
05-15-2011, 02:06 PM
Oh Jack! I hope that at least the trips you might have on the pain killers might be worth it a bit. I hope you're not in too much pain and that regular life comes back sooner than you anticipate. (Maybe some good whiskey might make the time go by a little faster - wink wink, nudge nudge). Lots of love and a speedy recovery!
pberggren1
05-15-2011, 03:42 PM
I've got some old scotch here from the 40's! LOL
Psyborg
05-16-2011, 12:05 AM
Well I've been really stupid again. :(
I won't go into details because I can't believe that something I always knew was a bad idea suddenly seemed to be the right thing to do. Anyway, I put my full body weight onto my arms at an awkward angle and my sternum went Pop and hurt like hell!
I called my wife for help and we had another good experience from the ambulance service who arrived within 5 minutes and carried me off to hospital. They soon came to the conclusion that nothing was broken and that I just had torn cartilage. I spent a sleepless night high on Morphine, had an assessment of my capabilities and was taken back home where I am now. I can just about manage to use the bathroom and move from arm chair to wheel chair, but not a great deal more. Deep breathing and coughing are a real nightmare.
I wonder how many weeks this is going to take?
Well when I dumped my motorcycle I hurt my ribs, and the one spot still hurts, I suspect I tore cartilage too. I hope you start feeling a bit better soon.
Sangye
05-16-2011, 12:14 AM
I hope you're doing okay today, Jack. I imagine you might be feeling pretty disheartened with another setback. Hang in there. :hug1:
Thanks for all the messages of support guys! :smile1:
Yes, quite a few of my problems recently have been due to weak connective tissue in addition to the bone breaking incident of last year and this is all a Pred side effect. Apparently I have forced my arms back and this has over extended my chest, tearing the cartilage over the sternum that holds it all together. I have had this sort of damage to ribs in the past so know the routine - usually gets worse for the first couple of days (like today! Very bad :sad:) and then gets better very slowly in fits and starts over the next few weeks.
Pain killers never seem to have much effect on me until I get up to the strength of Morphine. But then that starts to make me feel sick and unwell and I have to take an antidote.
Oh well. This too will pass.
Sangye
05-16-2011, 12:35 AM
It's at least comforting to know what to expect, even if it means having to go through a lot of suffering meanwhile. Take care of yourself, Jack.
elephant
05-16-2011, 02:21 AM
Jack, sorry you hurt yourself. Don't forget or be afraid to take deep breaths. Do don't want to end up with pneumonia. Your a strong guy, you will pull through this.
Geoff
05-16-2011, 06:09 AM
Jack, for Pete's sake look after yourself, and stop putting us all thru this torture!!!!!
If you dont start bucking up your ideas, we will send someone round to put a bat up your night shirt!! (only joking, get well soon mate)
Lightwarrior
05-16-2011, 06:14 PM
Jack, sorry you hurt yourself. Don't forget or be afraid to take deep breaths. Do don't want to end up with pneumonia. Your a strong guy, you will pull through this.
Ditto to what elephant said Jack. I know it will hurt to deep breath so take a pain killer and breathe in and exhale as strongly as you can. I'm sending you light and energy for healing.
jmmilliorn
05-16-2011, 07:34 PM
Jack,
I re-broke a rib coughing! Ever since I got diagnosed in Jan., I've had a chronic cough. Sometimes I cough for an hour straight. I have coughed uncontrollably and violently till I throw up. I don't know if it is the WG, the Pred. or some other med. It could be the mysterious "nodule" that recently appeared on my CT scan that wasn't there in Sept. during my last CT scan. I don't know, but it hurts like crazy to break a rib. #9 rib I think they said. One of the lower ones that expands when you breathe. I've taken bottles and bottles of cough medicine. None of the docs can tell me what is causing the cough. It has gotten better in the last two weeks, but I still have to take hydrocodone to make it through a meeting or church service, or even just to enjoy a TV show or meal with my family. Hope you are better soon.
I know exactly what you mean about the coughing and have broken ribs on several occasions. Actually, I don't think they have been true breaks, but more of the strained cartilage problem. What does it matter? It hurts just as much and they still can't cure it!
My cough developed about 12 years ago and it took a biopsy before they diagnosed Bronchiectasis. The consultants say that this is not connected with Weg's, but I'm sure they are wrong and there are several other members on the forum who also have it. I use a couple of inhalers, but I've yet to find anything that has much effect in spite of trying lots of different ones.
jmmilliorn
05-16-2011, 08:36 PM
I hope the Rituximab helps the cough, too. I take Advair, Singulair, Albuteral, and Rhinocort. Plus Tussionex (with hydrocodone) and of course, Robitussin DM cough syrup. I was coughing up a lot of gnarly stuff, but lately it has gotten better. Mostly just a dry cough now. Maybe the meds are helping at last. I also have a stash of hydrocodone tablets which help for a few hours when necessary. I consulted my internist, my cardiologist, an allergist, and saw pulmonologists and respiratory therapists at the Cleveland Clinic. Got no definitive cause and no cure for the cough from any of them. I just hope it continues to improve. Next to the shortness of breath (which may be related) the cough is one of my most irritating symptoms, and it has driven my wife to the edge of insanity. I have to sleep in another room much of the time since the cough comes and goes at all hours. I get little enough sleep anyway with the steroids and the cough just shortens the sleep even more.
I also saw an ENT and of course my WG doc.
it has driven my wife to the edge of insanity. I have to sleep in another room much of the time since the cough comes and goes at all hours. I get little enough sleep anyway with the steroids and the cough just shortens the sleep even more.
.
All sounds so familiar!
mishb
05-16-2011, 10:40 PM
I hope your pains are better in extra quick time Jack.....don't forget lots of pillows
A very old dear friend of mine can break a rib just by rolling over in bed (cancer in the bones) and he carries pillows everywhere for the deep breathing and especially the coughing.
I think we need to wrap you, and he, in bubble wrap and pillows :unsure:
Keep smiling
Michelle
Deb Roy
05-16-2011, 11:37 PM
Thank you Beckie, He is in my thoughts and prayers for a speedy recovery.
Daggar
05-17-2011, 02:23 AM
.....Apparently I have forced my arms back and this has over extended my chest, tearing the cartilage over the sternum that holds it all together. I have had this sort of damage to ribs in the past so know the routine - usually gets worse for the first couple of days (like today! Very bad :sad:) and then gets better very slowly in fits and starts over the next few weeks.......Oh well. This too will pass.
Sounds like the injury Holly experienced last month.... she went inline skating while out with friends and fell backwards. Instinct made her put her arms behind her to stop the fall and she strained muscles (not sure about cartilage) across her chest. Trip to E.R. and x-rays were negative so she had to deal with a couple of weeks with the pain. First few days were the worst.
R&R and ice Jack.... and if you chose... we won't tell the doc about the scotch on the rocks.
Hello Jack - I have not been on for ages because my laptop 'died' but have a new one now and been reading the posts and was sorry to see you have hurt your sternum - very painful. A while ago I slipped on the wet floor in the bathroom and slammed onto the bath, so you have my sympathy. Get well soon Jack - best wishes :smile1:
Fran
Brooke
05-18-2011, 03:46 AM
Hope you get better soon Jack!!!!
jmmilliorn
05-18-2011, 11:52 AM
Feeling any better yet?
jola57
05-18-2011, 11:46 PM
I hope the pain gets better. Get your kitty to sit on it and warm it up, the heat and ions in the fur will make it feel better. An old wives tale but maybe it will help:wink1:
Sangye
05-19-2011, 01:51 AM
LOL Sounds painful!! How long did it take the old wives to pry the cat off and tell how well it worked? :laugh::blink:
Well it is 7:30 in the evening now and I'm just starting to recover from having a really bad day. :sad:
Sorry to always be writing about my troubles, but I feel the need to vent!
I think that the increased pain killers resulted in some dehydration, because I have had constipation since my injury 5 days ago and also my cough dried up and I did not pee much either. I eased off on the Tramadol yesterday and everything from the past days decided to catch up with me today! I have spent most of the day sitting on the toilet with diarrhoea and have also painfully coughed up half a cup of nasty mucus. I feel exhausted and miserable.
I seem to now be getting back to something more like normal, so I don't think I've caught anything nasty. It is just all the usual rubbish only more so.
Jaden caught a bird and brought it in first thing this morning, so the day was bad right from the off. Hoping for tomorrow to be a bit better.
Sangye
05-19-2011, 05:44 AM
Oh no, Jack. Some of the pain killers affect processes like peristalsis and urine production, and they excessively dry up mucus. When you stop or decrease them, the body tries to catch up. I'm so sorry. It sounds miserable. And to start the day with a dead bird.... so sad. :sad: Hugs to you to have a better day tomorrow. I hope you can get some good sleep tonight.
jmmilliorn
05-19-2011, 09:30 AM
Jack,
Venting is good. I had a really bad day yesterday too. i was surprised since I've felt better every day since my first Rituxan infusion. Your case is worse though. It takes a while for ribs to heal. I have noticed that when I take strong pain pills they constipate me. Especially hydrocodone. I know it when I take them, but sometimes you choose the lesser of two evils. I eat sesame snacks, grape nuts cereal and lots of fruit to counter act. Fish oil pills help, too. Maybe the cat thought the bird would help your condition.
I'll take diarrhea over constipation any old day however. Let 'er rip!
When you wake up and read this, I hope you are having a better day.
I have noticed that when I take strong pain pills they constipate me
I'm no doctor, but my understanding is that anything in the narcotics family (oxy, hydro, tramadol, codeine, morphine, etc) will cause constipation. Tramadol is a codiene/tylenol mix and I'm on 4 a day. It is a very little amount to be on. Nevertheless, it causes constipation, so I'm on laxatives as well.
I would have to add it up, but I think I am on 5 or 6 "keep alive" drugs and one treatment drug. But, I'm also on 3 or 4 drugs specifically to counteract the side-effects of the necessary drugs.... In one case, I take yet a 3rd drug to counteract the side-effects of one of my side-effect drugs (does that make sense?)....
jmmilliorn
05-19-2011, 10:06 AM
That sounds about right. I wish there was a drug to counteract the weight gain symptoms of Prednisone.
Thanks for all the good wishes. :smile1:
I have reverted to the drug combination that I know and love, or at least know that I can tolerate and things are much better today. Sometimes, you just have to be patient and wait to get better without messing too much. I know this one is going to take a while so I was perhaps being a bit too eager to try to cure it.
jmmilliorn
05-19-2011, 09:11 PM
Glad you have new resolve today. Maybe you will "turn the corner" and begin feeling better soon.
Sangye
05-20-2011, 01:54 AM
Happy to hear that, Jack. At least something good came out of your prior painful experiences!
Something this has prompted me to do is to buy a nebuliser to dispense saline mist. This is something I was using in hospital and think it helped to loosen the mucus a little. Has anyone else used one of these?
Sangye
05-20-2011, 03:15 AM
I haven't, but if anyone added more humidity to the air here I think I'd drown. Bleh. Maryland sucks. :laugh:
chrisTIn@
05-20-2011, 05:30 AM
I seem to now be getting back to something more like normal..
Jaden caught a bird and brought it in first thing this morning...
Good to hear that you feel a bit better Jack.
I think Jaden noticed you were a bit ill,
and tried to help you gather food. :wink1:
Quite a caring cat, I must say...
Give her my regards.
I haven't tried a nebuliser, but I do have a cpap (bi-pap) with a humidifier. I use it every night. Sometimes I crank the humidifier way up.....
Oh joy! I seem to have caught a chest infection now. :sad:
Awake all night coughing up nasty gunge and it is a National holiday today so the regular doctor's place is closed. I had a home visit by the emergency doc and now have some Amoxycillin which usually works for me, but it took 6 hours for him to arrive. I was just too wiped out to get myself to the ER but thought that I ought to act sooner rather than later.
Sangye
05-31-2011, 02:23 AM
Oh no, Jack.... :sad: I was thinking of you last night and was gonna ask how your ribs were healing. I hope the antibiotic kicks in fast.
BrianR
05-31-2011, 02:46 AM
I hope this infection passes quickly Jack! Maybe you should try Marta's grappa hocus pocus? I prefer my method of internal intake over hers but...
pberggren1
05-31-2011, 02:58 AM
How much grappa do you take at a time Brian?
BrianR
05-31-2011, 03:04 AM
How much grappa do you take at a time Brian?
I'm a "go big or go home" kind of individual so no sense limiting it to one ounce. You can't fly on one wing - right vdub?!
Seriously though, I am a bit of a doubting Thomas when it comes to things like what Marta has suggested re: wool soaked grappa on one's chest but here I am into week four of a chest cold and Marta seems to be be beating it after only one week (fingers still crossed). How does that work?? Perhaps the grappa therapy???? It's worth a try.
pberggren1
05-31-2011, 03:07 AM
I might be more inclined to try a good old cognac.
Sangye
05-31-2011, 03:10 AM
ROTFL... Folk remedies are often proven to be right, Brian. I had knee surgery in my 20's and the swelling persisted despite PT. Docs had no idea what was happening. My Greek grandmother kept saying to put onions on it. I was not into holistic health at the time and thought she was nuts. After weeks of no improvement, I put onions on it for 1 hour. The swelling disappeared completely and never returned. I've since learned onions have anti-inflammatory properties. LOL! So many of these remedies are proven out by science when explored.
Now quit slurping down the grappa and do it right! :flapper:
BrianR
05-31-2011, 05:52 AM
I have had 4 knee surgeries and just had my first cortisone shot last week as my knee pain is getting unbearable. I am getting dangerously close to having to have a knee replacement but first I have to get through a few bike races this summer.
Marta - please hide the grappa from me and buy an extra onion today.
Jack -sorry for hijacking this thread and I shall now cease and desist.
pberggren1
05-31-2011, 07:37 AM
4 knee surgeries?!!!!! Yikes!!!! I hope you have a good orhto. My dad had knee surgery about 15 years ago or so. He is a flooring installer by trade so his knees are shot. He said the last few years when he kneels down it is all crunchy feeling and sounding.
Sangye
05-31-2011, 07:46 AM
I've had 3 knee surgeries and will someday need at least one more to fix a smashed up patella. It was in bad shape before Wegs but manageable. I've had a couple major injuries to it since being sick. I couldn't work as a chiropractor unless it was fixed. What did you do to yours, Brian?
BrianR
05-31-2011, 09:16 AM
I tore my lateral meniscus is 1982 and had a bunch removed. Then I had 3 further scopes over the years to trim out more and more and now there is none left. Essentially severe OA on the lateral side and now the only thing to do is replace the knee and I hope to avoid that for another few (several??) years. Whatever futher damage I do to it is really immaterial; it's just tolerating the pain when it gets bad. When it's bad it's REALLY bad but somehow when I get on my bike I have no problems. I limp to my bike, crawl on, ride with no problem for hours on end, and then fall back off it when I'm done. It seems to work for me so I am going with it. It seems that when I rest my knee too long (more than 2 days) it really stiffens up.
This is minor stuff and very manageable - and I think I am way off topic!
(I really want to insert that Putin pic here now but can't find it - dang!)
pberggren1
05-31-2011, 10:04 AM
I tore my lateral meniscus is 1982 and had a bunch removed. Then I had 3 further scopes over the years to trim out more and more and now there is none left. Essentially severe OA on the lateral side and now the only thing to do is replace the knee and I hope to avoid that for another few (several??) years. Whatever futher damage I do to it is really immaterial; it's just tolerating the pain when it gets bad. When it's bad it's REALLY bad but somehow when I get on my bike I have no problems. I limp to my bike, crawl on, ride with no problem for hours on end, and then fall back off it when I'm done. It seems to work for me so I am going with it. It seems that when I rest my knee too long (more than 2 days) it really stiffens up.
This is minor stuff and very manageable - and I think I am way off topic!
(I really want to insert that Putin pic here now but can't find it - dang!)
I was just thinking of the Putin pic as well. LOL
There is always Martas grappa for the pain. LOL
So I take it OA is OsteoArthritis?
Sangye
05-31-2011, 11:51 AM
I assume you've checked into knee injections--not cortisone, but sort of like joint fluid. Can help you stave off a knee replacement. You're too young to do that if you can wait, IMO. And now....
:back on topic:
BrianR
05-31-2011, 01:04 PM
Yes I have looked into it and it is next on my list. Synvec I believe it's called.
Jack, how's the chest????
Are we all back again? :wink1:
The Amoxycillin worked like magic and within 12 hours I had declared myself cured, or at least back to something approaching normal for me! I will of course be continuing to take them for the rest of the week and I must get myself a supply to keep in reserve.
Sangye
05-31-2011, 09:09 PM
Yay!!! :hug3:
I have to say, even at the 679th reply this is the only thread ever to stay on topic. Except for the bit about Brian's knees. LOL! :laugh:
BrianR
06-01-2011, 01:23 AM
Good news Jack!
Marta is on an antibiotic right now to clear up her chest "thing" so I hope it works as well for her as yours has for you.
marta
06-01-2011, 03:59 AM
So glad to hear the magic potion is helping Jack. Mine is called Avelox (Moxifloxacin hcl) which apparently has a negative interaction with people who take pred (i.e. all of us) in that it can cause your tendons and ligaments to rupture - nice, hey??? So I'm taking it very very very easy while I'm on it - only six more days to go.
Take care Jack, you're in my thoughts.
pberggren1
06-01-2011, 04:31 AM
So glad to hear the magic potion is helping Jack. Mine is called Avelox (Moxifloxacin hcl) which apparently has a negative interaction with people who take pred (i.e. all of us) in that it can cause your tendons and ligaments to rupture - nice, hey??? So I'm taking it very very very easy while I'm on it - only six more days to go.
Take care Jack, you're in my thoughts.
I've taken Avelox a few times. You'll do fine.
it can cause your tendons and ligaments to rupture - nice, hey???
The very thought scares the hell out of me. It seems to be something I am now very prone to and it really hurts!
renidrag
06-01-2011, 04:58 AM
Glad you are feeling better Jack.
Thanks renidrag and everyone else too. The chest pain is going to take a few more weeks, but there are definite signs of an improvement and I'm also getting used to it if that is at all possible!
So glad to hear the magic potion is helping Jack. Mine is called Avelox (Moxifloxacin hcl) which apparently has a negative interaction with people who take pred (i.e. all of us) in that it can cause your tendons and ligaments to rupture - nice, hey??? So I'm taking it very very very easy while I'm on it - only six more days to go.
Take care Jack, you're in my thoughts.
My pharmacist warned me about this when they gave me the antibiotic. I wonder how long does the extra risk last once you finish the antibiotic. It is scary though it might be best to avoid any skiing or skateboarding for awhile.:wink1:
marta
06-01-2011, 01:29 PM
My pharmacist warned me about this when they gave me the antibiotic. I wonder how long does the extra risk last once you finish the antibiotic. It is scary though it might be best to avoid any skiing or skateboarding for awhile.:wink1:
The pharmacist said it should only be a problem while I'm actually taking the antibiotic. Luckily ski season is over. Skateboarding has always freaked me out a little. I'm gardening now - although I was trying to pull this new baby tree growing under my deck yesterday and as I was pulling and it was pulling back I got this flash in my mind saying " this is a great way to pull a ligament or tendon appart" so I abruptly stopped that excersise. :)
Sangye
06-02-2011, 03:21 AM
The family of antibiotics called "fluoroquinolones" puts you at high risk of tendon and ligament rupture. I don't think it's necessarily true that the risk ends when the treatment ends. Personally I would assume that it continues for a few weeks.
Some of the common antibiotics in this family are cipro, levaquin and avelox. This family is also one of the harshest. It's best to avoid them if you can--use them as last resort only. They contain fluoride, which replaces the iodine in the thyroid and can cause problems. When I was practicing, I noticed my patients who took fluoroquinolones often got very weak/ wiped out during treatment and this continued for up to 8 weeks afterwards. (It had nothing to do with the severity of their infections, as some had taken cipro for a mild bladder infection.) Many developed thyroid issues, though not necessarily ones that persisted.
I was given avelox via IV once and had an immediate severe reaction. So I can't take any fluoroquinolones. I'm not too upset about that, since I don't have to arm wrestle my docs about it.
marta
06-04-2011, 11:48 AM
I hate arm wrestling with doctors. Hate it.
Jack, I hope you're feeling better today. Been thinking about you.
Sangye
06-04-2011, 01:03 PM
I hate arm wrestling with doctors. Hate it.
LOL Me, too. It can be like a battle of wills. Dr Seo seemed to understand me pretty quickly. Sometimes he'll suggest something that I'm not thrilled about, or that I just plain will not do. When it isn't something important he says, "I'm not gonna arm wrestle you over it." It always cracks me up.
marta
06-05-2011, 03:28 PM
My GP and now my new awesome Rheumy are great and are starting to figure out how I operate - ha ha. So we work more like a team. They tell me what's going down, and give me what the options are and then we discuss the pros and cons together and make a decision. I respect both of them fully but I also feel like they respect my opinion and it's great to feel like I'm an active member in my healing process. It wasn't like that with my old rheumy and thanks to you all, I had the courage to dump his sorry butt and look for the right doctor. Halelujah!!!! (in the famous words of Leonard Cohen :wink1:)
pberggren1
06-05-2011, 05:47 PM
I am not just a member of my care team, I am the BOSS!!!
My doc told me from day 1 that I am the boss and will make all decisions. He said he is just there to help along the process and help answer any questions.
I feel that I am in the same position, but have to admit that the doctors involved in vasculitis research know way more than I will ever know about my condition so usually I bow to their decisions if they seem sensible.
pberggren1
06-06-2011, 04:41 AM
I feel that I am in the same position, but have to admit that the doctors involved in vasculitis research know way more than I will ever know about my condition so usually I bow to their decisions if they seem sensible.
I agree with you Jack 100%. I feel that there is no way I can know what my doc knows about Wegs.
Progress report:
Some significant progress now noticeable with chest pain. It still hurts, but is no longer stopping me from doing things so it is bearable. I must have also bruised my coccyx when I collapsed down onto the floor and this is now a bit uncomfortable and another one that takes ages to get better. I wish I had some more padding around there!
Sangye
06-09-2011, 02:20 AM
Yay for less chest pain. Boo for coccyx pain-- that can cause a lot of problems.
pberggren1
06-09-2011, 04:32 AM
Yay for less chest pain. Boo for coccyx pain-- that can cause a lot of problems.
What is coccyx?
Psyborg
06-09-2011, 04:52 AM
Progress report:
Some significant progress now noticeable with chest pain. It still hurts, but is no longer stopping me from doing things so it is bearable. I must have also bruised my coccyx when I collapsed down onto the floor and this is now a bit uncomfortable and another one that takes ages to get better. I wish I had some more padding around there!
Ack, you have my sympathy on the coccyx pain. I dislocated/fractured mine a few years ago. I had to finally get a nerve block to get relief. Thankfully when the nerves returned it had been long enough to heal.
Psyborg
06-09-2011, 04:52 AM
What is coccyx?
The tailbone...specifically the lowest part of the spine where it extends past the pelvis.
pberggren1
06-09-2011, 06:03 AM
Thanks Bob, I remember now.
I wish I had some more padding around there!
After 25 years of pred you don't have enough padding? :-)
Sangye
06-09-2011, 08:10 AM
Hey Phil, do you know what Google is? :wink1:
pberggren1
06-09-2011, 08:12 AM
Hey Phil, do you know what Google is? :wink1:
Yup, it is www.wegeners-granulomatosis.com/sangyeand (http://www.wegeners-granulomatosis.com/sangyeand)bob.
Daggar
06-09-2011, 08:17 AM
Had a coccyx injury in the past and damn that is aggravating- one of the only times I used a chiropractor
Could of regrown the tail in the time it took to heal.:wink1:
Yup, it is www.wegeners-granulomatosis.com/sangyeand (http://www.wegeners-granulomatosis.com/sangyeand)bob
HA! Touche' :)
After 25 years of pred you don't have enough padding? :-)
Unfortunately not. :(
The Pred has given me muscle atrophy and my throat and digestive system problems make eating very difficult so I have ended up malnourished. height 6ft, weight 95 lbs !
Sangye
06-09-2011, 09:36 AM
Jack, I've never asked you this but have you considered getting a feeding tube? I know it's awful. I sure wouldn't want one. But you can't go on like this. You've got to get nutrients. :sad:
pberggren1
06-09-2011, 09:38 AM
I have to agree with Sangye 100% Jack. You have to get nutrients. You are way too thin. I am 5'10" at 165 pounds.
Dang, Jack! That is bad. Seems like you do indeed need to do something. What's the doc say?
I see doctors and specialists on a regular basis as you know, but none of them have expressed that much concern and don't seem to think that it is life threatening. I have of course had all the necessary consultations with Dieticians as well as the Throat and Gastro docs. but there is not much they can do for me. I have considered the feeding tube option, but not really looked into the pros and cons and it has never been mentioned as an option. I'll have a think about it.
The good thing is that when I need picking up by ambulance, it is easy for them to move me around! :wink1:
delorisdoe
06-09-2011, 09:59 PM
there is always a bright side.
jola57
06-12-2011, 01:43 PM
I am sure that this is one place they don't mind comming to:biggrin:
The good thing is that when I need picking up by ambulance, it is easy for them to move me around!
I guess you wouldn't have any trouble fitting into my MG either, but I'm pretty certain, at 6' tall, the top would need to be down and you would have to get used to scraping bugs off your teeth.... Yeah, there are some advantages..... :-)
Sangye
06-18-2011, 01:29 AM
We haven't heard from Jack since Sunday so last night I sent him a PM. I still haven't heard back and he's not logged on this morning. I'm worried about him. Has anyone else heard from him?
Brooke
06-18-2011, 01:55 AM
Havent heard, Jack we hope you are ok!
Didn't he say a while back that he wasn't gonna post everyday?
Sangye
06-18-2011, 02:04 AM
Yes, but he usually doesn't go this long without posting. :sad:
Brooke
06-18-2011, 02:05 AM
Ok, well we can keep eachother posted if we hear from him.
Psyborg
06-18-2011, 03:11 AM
I hope everything is ok...
I ve had PM from Jack mon ,wed and thurs and he was ok then DEE x
Sangye
06-18-2011, 04:15 AM
Thanks for letting us know, Dee!
*wags finger at Jack for making us worry* :laugh:
I'm back on line folks! :biggrin1:
I've had a few days when I was not so good so I probably checked the posts, but did not feel up to making any replies. Today I'm better, but have been out all day collecting my daughter from university for the summer break.
Thanks for all the concern! :thumbsup:
Jack, So glad to see you back and happy to hear you are feeling better..http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)
pberggren1
06-19-2011, 08:04 AM
I'm back on line folks! :biggrin1:
I've had a few days when I was not so good so I probably checked the posts, but did not feel up to making any replies. Today I'm better, but have been out all day collecting my daughter from university for the summer break.
Thanks for all the concern! :thumbsup:
I know what you mean Jack. There are many times I don't feel lik posting.
Sangye
06-19-2011, 01:03 PM
Yay, glad to know you're basically okay. :thumbsup:
I love the way that "Basically OK" in the world of Weggies is a euphemism for "Still alive!" :wink1:
delorisdoe
06-19-2011, 10:40 PM
LOL. I am the boss at my work and I have to say I feel sorry for my employees when they are not feeling good. My definition of too sick to work is way off from their definition. Dont even try to call in for a hangover or head cold. Most of my staff try to call in for feeling half as bad as I do on a regular basis. Good thing they love me or id be the only one showing up for work.
Sangye
06-20-2011, 01:01 AM
I love the way that "Basically OK" in the world of Weggies is a euphemism for "Still alive!" :wink1:
LOL Exactly. :laugh:
chrisTIn@
06-22-2011, 10:04 PM
Hi Jack! On another thread you told that you have difficulty eating at the moment again.
I sure hope you will be able to find a solution to that problem, and that you will be able to eat the kind of food you really like!
It's nice to see you are writing again, though... :smile1:
How's Jaden doing?
Psyborg
06-22-2011, 11:30 PM
Is there any way to correct the issue with the Pharyngeal Pouch? I'm sorry...I'm definitely not medical in my background so not sure if that's fixable?
Brooke
06-23-2011, 01:03 AM
Hi Jack, glad everything is ok :)
LisaMarie
06-23-2011, 01:45 AM
Jack,
I agree "Still alive" is good...hope you have a good summer with your daughter home and hope you get eating better again soon....Pharengeal pouches are diffinatly an added problem none of us need...glad to see you back on line...lately I ahve been reading but not posting much....so much going on..afraid I may ramble on for ever...Have a great week!!!
Thanks for all the good vibes from everyone. I made a post a couple of days ago in this thread that was fairly down beat, but it seems to have disappeared. Just as well really because it was not very helpful, just more problems that will come and go with the others I expect.
Sangye
06-24-2011, 08:14 AM
Jack, I don't mind reading "downbeat" posts. It's part of what we go through.
I don't usually mind leaning on the Forum when I'm having a bad time, I find that it helps and the other members are always generous with their support and sympathy. But sometimes, when a whole string of bad stuff happens, I think that people could do without me adding their problems. After all, almost everyone on here has some burden to carry and some of the newer members are often near to being overwhelmed. They could probably do without hearing from a time served Weggie who is continuing to fall apart.
Sangye
06-24-2011, 08:57 AM
How about you let us decide? :wink1: I've never been so low that I didn't want to know what was going on with you. I can be overwhelmed with my own stuff and still have a lot of room left to care about others.
Have to agree with Sangye.... You just post away.... :-)
Chris G
06-24-2011, 10:29 AM
I'm glad to see you're back, and doing alright Jack. How are your ribs healing?
pberggren1
06-24-2011, 11:49 AM
We want 100% of Jack!
Ribs are almost better! :thumbup:
I'm just struggling with my lack of energy and generally feeling crap in the mornings at the moment. This used to only last for two or three hours, but it is now taking until the afternoon before I can do much more than doze in the chair. Some of it is sure to be due to lack of nutrition and the rest is the lung infection, so I have started to make a special effort with eating, fluid intake and keeping my temperature in check and I do seem to have improved as the week has gone on.
Sangye
06-25-2011, 12:40 AM
Glad to hear your ribs are better. I think it's amazing that your body can produce any energy at all, given no nutrition, trying to heal an injury and having to fight an infection at the same time. It's working overtime.
Ribs are almost better! :thumbup:
I'm just struggling with my lack of energy and generally feeling crap in the mornings at the moment. This used to only last for two or three hours, but it is now taking until the afternoon before I can do much more than doze in the chair. Some of it is sure to be due to lack of nutrition and the rest is the lung infection, so I have started to make a special effort with eating, fluid intake and keeping my temperature in check and I do seem to have improved as the week has gone on.
I am glad you are making the effort to take care of yourself and to stay with us here. I think our anxiety level goes up more when we don't hear anything and don't know what is going on. We all need a break at times and sometimes we may also have computer or internet problems or just a busy schedule that keeps us away.
I am happy to hear your feel some progress in healing.
marta
06-25-2011, 01:40 PM
Jack, you're a rock star in my eyes. Rock stars also lack energy in the morning and feel generally crappy, so you're in good company. I only kid, but I'm glad that you're seeing improvement in the rib department and are doing things to improve the 'rock star negative side effects'. Take care and keep on the trajectory you're currently on - the improvement trajectory.
I too am happy to hear that things are going well. Thinking of you often.
Switched to another antibiotic today - Doxycycline. If it does not result in an improvement I'll get a sputum sample cultured and see if they can find anything. They usually don't which is always a bit of a worry when you have Wegs.
I also had a financial assessment made to see if I can get help to install a stair lift since things are not getting any easier and I don't want to find myself suddenly restricted to down stairs.
Sangye
06-28-2011, 05:38 AM
Happy to hear about both, Jack. Those stair lifts are amazing.
renidrag
06-28-2011, 10:30 AM
Hope the stair lift works for you Jack. I spent first three months "downstairs". Did not like it at all. Best to you,
Dale
I'm getting fed up with this! :mad1:
Another day of feeling unwell, lacking enough energy to move and gasping for breath. It is now evening time and I'm only just now feeling that I have improved a little. Sputum sample to the doc's tomorrow!
On a slightly brighter note - they just rang to tell me that they will fit a ramp to my back door tomorrow (another benefit of the Health Service) so if the weather is good I'll be able to get out into the garden again. :thumbup:
Sangye
06-30-2011, 04:54 AM
Yup, definitely time for a sputum sample. I hope the culture grows quickly and they know exactly which antibiotic will help. You've suffered with this infection for too long.
Good news about the ramp, though. :thumbsup:
Hammy8241
06-30-2011, 05:12 AM
Do you think that the weather over here is not helping you much at the mo? Pollon count is high as well as it being a sticky! Concur with Sangye re getting the right meds for the problem.
It's a shame that the Uk is not having the Winter Olympics otherwise you could get the ramp altered slightly and be another 'Eddie the Eagle' when you recover. You would also have a good reason for braking the odd bone or two.
pberggren1
06-30-2011, 07:46 AM
Now Hammy! Hot cross buns?!! Seriously now!!! They are just a tad out of season.
Update:
I've decided that a lot of the bad symptoms I'm getting at the moment are side effects from the new antibiotics. The current one's side effect list (Doxycyclin) seems to include everything that is currently causing me trouble, so I'm going back to the Bactrim. At least I know what it does for me and it has no side effects. I'll then have a fresh look at how I feel.
Decided to sleep downstairs tonight. Probably more convenient and I'm not sure if I could do the stairs at the moment anyway.
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