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Sangye
05-22-2011, 11:04 AM
Lately we've been talking a lot about the aspects of this support group that help all of us. I wanted to start a thread to address the difficulties many of us face in dealing with the long haul of Wegs--in particular when things don't go as planned and remission and/or the return to one's former life are delayed or maybe never reached.

It's understandable when people who get strong again want to focus more on the "success" stories about Wegs and feel that those who are not making such progress are sort of a drag or even depressing to be around. I know that isn't everyone, but it has been a common theme cropping up lately. As a result, I've found myself reluctant to post updates this week about how lousy I'm feeling doing the rtx treatments and how much despair I truly have about getting better. Sometimes it can be pretty lonely to still be struggling so much with Wegs and/or complications year after year.

I sense I'm not the only one feeling this way, but if I am then this will be a very short thread!

I want to make it clear that I am very happy for those of you who are doing well, and that this thread is not about diminishing the celebratory energy you feel. It's about giving voice to those who are not in that place. :smile1:

delorisdoe
05-22-2011, 12:08 PM
I'm gonna think before speeking. This is uncharted territory for me.

vdub
05-22-2011, 01:21 PM
It changes from day-to-day with me, but I have noticed that overall I have felt worse this month than I did last month. A lot of it is general discomfort from moving from the dry southwest to the hot and humid mid-west. The humidiy coupled with the overheating and sweating from the levothyroxin and cortef is making life very uncomfortable. Add that to the aches and pains from the mtx and I can be good one day and not so good the next. Today was a bad day. i have also noticed that I am anxious, nervous, and frustrated in very aggressive way. i have to make an effort relax., but it doesn't come easy.

I think, at this moment, because of the heat and humidity in the mid-west, I simply have too many discomforts being thrown at me at once and it's difficult to handle. Time to go back out west I guess....

LisaMarie
05-22-2011, 01:57 PM
:crying:I have ok days and better days still waiting for a good day...I fake feeling better than I do at times so this thing does not consume me.....I am slowly accepting that I will have a new norm..Like the doc said "we can not be 23 forever..lol:flapper:...whether I like it or not ....it is here to stay and may change ...so I better be grateful for what I do have.....since my dog seems to love my air way I am overly cautious at times....if my bronchiloes behave I am good if not I will deal with it when it comes.....this trip to Mayo has shown me a new side of this roller coaster ....it is not as bad as it could be ....yes my joints hurt and my legs feel like lead after I push it but atleast I can walk.....I am happy for those who reach med free remission.....however it is highly doubtful in my case...will remain on 10 mg of pred and RTX treatments when my B cells are back...but this time it will be 1000mg x's 2 14 days apart....I may be mistaken on the dose...so hopefully the mac truck will find some place else to go....like the bottom of a lake never to return.....we are all so different but share this common thread ...so I pray we support each other in good and bad times....you all are more support and venting board than I have at home ....My husband is not dealing at all with my disease ...so it is a very lonely place there....I hope those of you who have supportative spouses realize how blessed you truely are.......I hope one day to have a good day for just one day to get my pollyanna back cause I am not liking the negative nancy who is moving in next door....counseling helps and so does my faith but at times I would like to just stick my head in the sand ...and wake up and all of this be a horrible dream....and i truly think we all feel that way sometime along this long haul that has been given to us:confused1:

Thakator
05-22-2011, 02:16 PM
Sangye, I would like to respond to your thread and hope to do so tomorrow (simply no more "spoons" for today). However, I have to at least say one thing for now - - which is that you are most assuredly not alone in your feelings regarding the struggle that many of us face, the sense of aloneness that many feel as they face it or in your belief that the sharing of our particular hardships through this forum makes it somewhat easier to deal with the specific hardships that come into our very own life because of the education we have gleaned from those sharings. An education we would be hard pressed to obtain anywhere else that I can think of. No, Sangye, you're not alone - - not by a long shot. And, dear lady, your 7,732 posts have helped many others feel not so alone themselves as they go through this journey, a journey in which most of us never actually even so much as meet in the flesh another soul traveling this same path. So, please, take some strength from that truth and let it help you through a week such as this. Ron

pberggren1
05-22-2011, 02:56 PM
This is a very good thread!

I will say that so far the posts on here almost echo the way I feel or have felt in the past. I have had a good remission back in 2005 to 2007 and was med free for a little over a year. I did fairly well. I did not handle the hear too well but then again who does. But overall my energy was good, no aches or pains, nose and sinuses were fairly good, etc.

But since late 2007 I have had 3 flares and a lung infection that almost killed me and have not been off pred in all that time. At best I will be off pred in about 10 to 12 monts. But I have to be realistic and might not ever get off pred.

I feel I have it easier than others at times but during last fall and winter I knew things were really bad. I could barely walkd, the pain in the head was so intense all I wanted was morphine or large glasses of whiskey. I did not take these but did take large doses of Tylenol and Ibuprofen. I coughed so bad that in made my head hurt unceasingly and my ribs hurt so bad that it hurt to breath. I was getting really depressed and losing hope. But when I started on the ctx and pred in early March the next week was such a turn around that I snapped out of the depression. If things are bad one can not just snap out of a depression like that.

Right now I am not out of the woods by any means but I know that I am improving week by week. I may never be rid of this lung infection but at least we know what it is and how to deal with it. I am confident that I will be able to start the rtx next month and then go to Imuran.

The total hearing loss is the hardest thing for me to deal with right now. I have been refered to the cochlear implant surgeon but it may take over a year before I actually get the implants. The surgeon may decide I am not fit for them and I may not be able to get them. And even if I do get them it will be nothing close to natural hearing. But I have high hopes that I will get them and will be able to understand speech some day.

I hope that I will be able to find a job some day that is sustainable or go back to school to find a better job. I would like to live on my own and be independent but I have to be realistic and face the fact that that may never happen.

I know that I do not read every post on here every day but most of them I do. I do not respond to all the posts or threads but then again not all pertain to me. If I feel I can be of help or give some humour then I will post something.

Being on these meds, especially pred, is no walk in the park. We all want to be med free but that is not possible for all of us.

I will continue to be on this Forum through good times and bad.

mishb
05-22-2011, 03:02 PM
Sangye, you're not alone - - not by a long shot. And, dear lady, your 7,732 posts have helped many others feel not so alone themselves as they go through this journey,

I agree, without your posts I would have been one of those ones stressing about what I read on Wikipeadia and other sights. It was only by fortune that my husband found this sight whilst looking for anti inflammatory diets for my RA. I will be one of those ones that will be hanging around for ever, even after remission .... yes I said it, I will gain remission... one day :unsure:
but I will still be here to check out how my new friends, on the other side of this great earth and on this inside of this computer, are getting on and also how I may be able to help someone new coming along...if need be. (I know, the truth is I don't have a life outside of my computer...basically on one 24/7)

I think it is most important for you to keep posting about how you are feeling, not so that we start worrying about you, but so others. new or old, can get the exact picture that all is not roses and simetimes these drugs don't always work the way they are supposed too. This way they can get a true picture and not feel like the odd person out if things aren't going to plan for them.

Keep Smiling
Michelle

jmmilliorn
05-22-2011, 03:57 PM
I haven't been on the forum long enough, and I haven't lived with the disease long enough to have the perspective that many of you have. But, what I've gained already is a better "realistic" view of the disease. I think that until recently, I was still in denial and telling myself I would soon be back to "normal." I remember saying after my diagnosis that "now I can go on offense" and lick this monster because now we know what it is. I'm still on defense as you all know. I don't think you ever get off defense. WG always has the ball--the whole game. It has been nearly a year since my first noticeable symptom and five months since my diagnosis and first treatment (MTX) which didn't work. In just this short time, I've already been up and down the roller coaster of hope and despair, and experienced many of the symptoms you all talk about without even knowing if they were part of the disease, side effects of the medicine, or just a coincidental simultaneous occurrence--of which I've had several. (thyroid tumor/thyroidectomy in Nov. for example) I now accept that I am going to have WG for the rest of my life whether I'm in remission or not, and that relapse is almost certainly inevitable. I'm not putting my life on hold anymore "until I get well." I'm going to do as much as I can, and enjoy as many days as the Creator gives me to the fullest extent possible. Even parts of days if that is all that is available. If the RTX I'm taking now works, I will rejoice and be thankful for the blessing as long as it lasts, but I'm not taking my health for granted ever again whether I'm in remission or not, and one hard lesson I've already learned from being the invalid in the family is empathy for others who are ill. I was rarely ill until this struck and come from a family where illness is viewed as a defect or weakness. You can see yourself end up on the "mark down" table pretty quickly even if no one is admitting it. I do have a supportive spouse, thankfully, but I see the stress it is adding to her life, not just taking care of me, and not just secretly worrying about her own security and future, but from caring and not being able to do much to change things. We all want to feel like we can change things, and WG is very good at making you feel helpless in this department.

Sangye, thanks for starting this thread. Thanks for all the good advice as well. And thanks to those of you who have already given me more info in a month than I was able to gather on my own during the last year.

delorisdoe
05-22-2011, 10:48 PM
I really dont think it is as simple as "I am better so I wont come here anymore". For me, when something is wrong I dont comfortably share or lean on others. I cant write a book, I cant put into words how I feel. I am not built that way. Do I wish I was? No, not really. This is how I survive. I survived an abusive childhood and a life threatning disease. I acheived remission. Remission is great. I never celebrated it though. Ten years ago a wegners forum consisted of an email group. Difficult to navigate but handy as well. My husband, mother, and mother in law panic when they think I am sick. I have spent the better part of my illness and remission making everyone around me believe that I am not sick and it is at its worse never anything to worry about so celebrating with them would not quite make sense. This group is the first place I have ever disscused wegners. I dont find any of the posts or any of you depressing, nobody here in my opinion is a drag.

I have always been ashamed of wegners. I dont know why i cant explain it but i do know that that is the feeling i get if someone asks me to talk to them about it. New for me is the fear. It took almost all 8 years of my remission to stop checking all of my exits for blood. I am sure glad that has paranoia has returned. I am afraid that my doctors do not know not to give me cytoxan anymore. Not that they will-they as of yet have not mentioned it-but I worry that they will mention it and that I will be to shy to tell them they are wrong. I am afraid of myself. A big part of me wants them to not know that cytoxan is not an option any longer. I think "it worked for me" but did it really? 2.5 years to acheive remmission by means of a dangerous drug may not be a success story.

Sangye, you should not feel that you cannot complain about your aches and pains just as people who are happy to be in remmission should rejoice. People talk about accepting their new normal. None of us would feel normal if we did not share what is to be expected and what is to be expected is pain, exhaustion, drug interaction, confusion and fear. I dont know about all of you but my doctors really only treat the disease. I come hear to treat the side effects-both mentaly and physicaly. I am not alone. I never knew this the first go around. I used to feel like I was one out of maybe 3 in canada. I was very lonely back then.

kulharv
05-22-2011, 11:55 PM
hi Sangye,

i like am very new to this forum but feel that i was extremely fortunate to find out about it. I have been talking to my family and friends about it every day and how it makes me feel to able to share my symptoms and find out information that i would not have been able to from my docs.

Sangye, your instant replies when i first joined were so helpful.

i have been reading some of the posts and you have been so there to help everyone and feel that you should continue to contribute they way you have.

We are all in this together and, i for one, look fo your posts as you have so much to share.
please continue to do so.

As Leigh, said, i felt alone until i joined the forum and feel part of a family in just 1 short month.
you are not alone!!!

chin up!!

harvi

mama2005
05-23-2011, 12:46 AM
I have not been diagnosed for long but I spent two years trying to find out what was wrong and I spent those two years wondering if anyone else knew what theses pains were. Now diagnosed and finding this forum makes me realize there are other people that understand the pain, frustration, and hopelessness that I have and do feel. I have no support outside of this forum so I look at this every day to see if I can learn anything new or look for advise on here. I have lost a lot to this disease, I lost two years of college. I would be graduating college this quarter, but when I lost my hearing and am unable to breathe I could not finish my police academe training. I appreciate all your support and do not find this forum as a sad place but a connection to my world that I live in. I hope you all continue to stay and post the good and the bad it helps to learn from others.

freakyschizogirl
05-23-2011, 12:54 AM
Today i feel lost and alone out in the wilderness. I admit i look to this forum more now than i did at diagnosis. No one but you all know the reality of living with this disease. Everyone around me just doesnt understand that as much as i want to get on and live a normal life, i feel like i wont ever be normal again.

When i find myself feeling helpless and alone i come on here and feel grateful others are able to share and truely sympathise and travel on this road too.

I'd hate to think where i would be without the expertise, advice and friendship i have found on this forum.

elephant
05-23-2011, 03:33 AM
This forum is a safe and non-judgemental place to tell everyone how you feel and what is going on with you at the moment. Right now, I am a nervous wreck! Had severe upper teeth and left maxiallary pain. So I started to take Bactrim DS twice a day last Wed. It has helped me about 80%. I am looking forward to seeing Dr Carol Lanford in late June. I see my local Rheumy in a couple of weeks.

marta
05-23-2011, 05:05 AM
Lately we've been talking a lot about the aspects of this support group that help all of us. I wanted to start a thread to address the difficulties many of us face in dealing with the long haul of Wegs--in particular when things don't go as planned and remission and/or the return to one's former life are delayed or maybe never reached.

It's understandable when people who get strong again want to focus more on the "success" stories about Wegs and feel that those who are not making such progress are sort of a drag or even depressing to be around. I know that isn't everyone, but it has been a common theme cropping up lately. As a result, I've found myself reluctant to post updates this week about how lousy I'm feeling doing the rtx treatments and how much despair I truly have about getting better. Sometimes it can be pretty lonely to still be struggling so much with Wegs and/or complications year after year.

I sense I'm not the only one feeling this way, but if I am then this will be a very short thread!

I want to make it clear that I am very happy for those of you who are doing well, and that this thread is not about diminishing the celebratory energy you feel. It's about giving voice to those who are not in that place. :smile1:

Sangye, I'm so sorry to hear that you're going through the same awful after-effects of RTX. My heart goes out to you and if there was a way I could send you some healing/pain relieving/strengthening energy I would do anything to do it - in the meantime I'm sending it to you using all the telepathic abilities I can muster, but I'm sure that isn't quite enough to make things better:unsure:. We are all brothers and sisters in spirit having to deal with the evil side of this evil disease, but also with the support and knowledge and experience we give each other. I am sure I have NOT seen once on any thread (I don't read them all, so I might have missed something) anyone showing any sign that they feel that people who aren't making progress are a drag or dpresseing to be around. That's what I love about this site... the support and encouragement that is shown to everyone, especially when we all have the inevitable stumble in our progress. It always comes with love and without judgement and full of knowledge that can not be found anywhere else in the world for a patient - not even from our doctors. I know that even when I have my gross days where everything hurts - many many times more than when I was giving birth, and I don't hear the world around me and all I want to do is disappear and reappear when everything is 'normal', I still feel fortunate because I know that things could be worse. I've seen some of the posts this forum and my heart goes out to you, because you've got so much more on your plates than I do. I almost feel guilty sometimes. You are all my extended family (I know I say that a lot) and I think of you every single day.

Sangye
05-23-2011, 08:05 AM
13 awesome replies! Well, this is what happens when you start a thread at bedtime and then don't get to check it again until the next evening.... These are such amazing posts--each one. Many of them had me in tears. Mike, your comments about feeling like you're on the "marked-down table." That's exactly how I have felt so much of the time. So much of my identity was tied up in being the strong one, or at least being the "quick rebounder" from any illness or injury I'd had before. Many around me didn't know how to cope when I got sick. I went into this mess super strong and with vitality and vigor. Whenever my therapist asks what I miss most, that's it-- the feeling of having vitality. Where even if you're laying down you feel strong and alive. I don't even remember what it was really like.

Lately I've felt increasingly despondent about ever getting it back. For so long I trudged through one major complication after another, hoping it would all get better once I got into remission. I thought, "Then I can start to rebuild." Four years post-dx I finally did get into remission and promptly spent the next 8 months with severe vertigo, hearing loss, pred adrenal damage, and Wegs popping up out of remission again. The failed rtx treatment in February was like the final straw. So here I am doing the 4 weeks of rtx and feeling horrible.... What do I hope for now, remission? Remission doesn't bring me vitality or even the ability to stand longer than 5 minutes. It's better than active disease, but it's a long way from something to be thrilled about.

It's tricky to balance clinging to a particular hope vs. keeping hope alive in general. I'm curious to hear how others deal with this.

pberggren1
05-23-2011, 09:54 AM
I find at the 'marked down table' one gets the best products! :hug3::thumbup::thumbsup:

vdub
05-23-2011, 10:12 AM
dpresseing to be around
Sorry Marta, but I've mentioned that before, but not exactly in that context. I sometimes get depressed reading the forum because there are so many people out there that have it worse than me and that bothers/depresses me. I feel really, really bad for them, but I also, selfishly, feel bad for me, because I'm thinking "this is what's in my future?" But, then there's always the veterans slugging their way through a day at a time and giving some hope to the rest of us along the way.


It's tricky to balance clinging to a particular hope vs. keeping hope alive in general.
I frequently tell myself that all this is not real, it's all a mistake and the docs are going to tell me any day now that the tests were all wrong or whatever. It's worse on my good days and I'm think "hey, this is getting better, feeling great, no problems", then things change within hours and I crash. The other thing that frequently passes through my mind is "I feel bad because of the mtx, if I can only get off the mtx, then everything will be ok". Then, of course, I get jerked back to reality and it's a tough realization to handle.

I agree with everyone else that this forum is really a great sounding board. Like everyone else has said; you learn a lot, it's nonjudgemental, and you can expose anything and everything. We're all in the same boat.

But more to the point that Sangye was asking.... How do you keep hope alive? I'm not sure I do. I have crudgingly accepted my new reality and I'm readjusting my life accordingly. WG has caused me to reprioritize things. For one thing, I'm not looking to far out into the future. And I am divesting myself from some of the material things that simply aren't going to be in my life anymore (like restoring my old tractors). And, I'm moving a few things up on my bucket list, like scuba diving....

There are small, brief moments of time (maybe 10 minutes) that happen 1 or 2 times a day where I don't hurt. When I hit that spot, I tell my wife I'm in the "zone". I don't even know what that means. Maybe the drugs all kick in at the right time or the brain just shuts down momentarily, but it is a wonderful time of the day when all the discomfort just goes way for whatever reason. I wish it would last longer.

EmmaC
05-23-2011, 11:14 AM
I'm a huge one for worrying daily. So much in my life is changing because of this illness I end up worrying if my mind is clear for 5 minutes, that I'm forgetting something that I should be worrying about! An example is the other night I received a phone call from a doctor I'd never seen before wanting to discuss my latest blood results as a matter of urgency. By the time I got the message it was too late to call back, so I spent the night wide awake thinking that i wouldn't wake up again in the morning as something must be seriously wrong. It turned out the doctor had seen my blood results without checking my file properly, had freaked out and decided to try to contact me. My normal doctor apologised and said that although my results look bad initially, they were as expected, and actually had small signs of improvement and were nothing to worry about! I can't think about a long haul, as I have so much despair at the moment that I've convinced myself that I probably haven't got long left! I think I over react to everything, but I can't seem to help it and should consider professional help to sort my head out. Luckily I have a fantastic family who will listen to me rambling on for hours at a time, but then they can never really know what it feels like to have this bizarre, unpredictable illness.
Some days are 'ok', but that's usually if I've done nothing at all except seriously distracting myself from day-to-day things. I can't work, and feel guilty about that even though the doctor has said he doesn't think I'm capable right now. But then I had a government medical assessment which declared me fit for work based on things such as an ability to use Facebook (yes, that was a genuine question they asked me), and the ability to hold a small empty cardboard box! I cried and cried over it all. Until they reversed their decision and realised they made a mistake. My neighbours have a problem with where I park my car as I try to get as near to my front door as possible, so I try not to leave the house if I can avoid it. I have other neighbours who are so noisy I can't sleep until way into the night sometimes. I swing all over the place with pain, sometimes mild, other times bad, and I worry that I'm getting addicted to codeine even though I try not go over 2 a day. I think my rheumatologist has forgotten about me, so I'm going to have to chase that up when I can face it tomorrow. I was supposed to be given an appointment for my next cyclophosphamide about 2 weeks ago but it didn't happen.
On a positive note my mum and sister turned up today with a nice load of chocolate, and my sister restyled my hair for me! It may seem trivial but it really cheered me up. I don't feel so disgusting now when I look in the mirror :-)

delorisdoe
05-23-2011, 11:52 AM
Vdub...I find myself wondering daily if it was not all just a big mistake.

Sangye
05-23-2011, 11:59 AM
Emma, are you newly diagnosed?

Psyborg
05-24-2011, 12:04 AM
Lately we've been talking a lot about the aspects of this support group that help all of us. I wanted to start a thread to address the difficulties many of us face in dealing with the long haul of Wegs--in particular when things don't go as planned and remission and/or the return to one's former life are delayed or maybe never reached.

It's understandable when people who get strong again want to focus more on the "success" stories about Wegs and feel that those who are not making such progress are sort of a drag or even depressing to be around. I know that isn't everyone, but it has been a common theme cropping up lately. As a result, I've found myself reluctant to post updates this week about how lousy I'm feeling doing the rtx treatments and how much despair I truly have about getting better. Sometimes it can be pretty lonely to still be struggling so much with Wegs and/or complications year after year.

I sense I'm not the only one feeling this way, but if I am then this will be a very short thread!

I want to make it clear that I am very happy for those of you who are doing well, and that this thread is not about diminishing the celebratory energy you feel. It's about giving voice to those who are not in that place. :smile1:

I hope I'm not one that might come off that way. I honestly feel a bit guilty to be doing as well as I am. I was caught reasonably early and I've responded pretty much optimally to treatment. I actually post some of that hoping it can give someone else hope, but I hope it doesn't seem like I'm rubbing it in to anyone. I don't know if I can explain, but I almost wish I could help people in a meaningful way, but I don't particularly have the personality of skills to do more than share ;)

Sangye
05-24-2011, 01:05 AM
I hope I'm not one that might come off that way. I honestly feel a bit guilty to be doing as well as I am. I was caught reasonably early and I've responded pretty much optimally to treatment. I actually post some of that hoping it can give someone else hope, but I hope it doesn't seem like I'm rubbing it in to anyone. I don't know if I can explain, but I almost wish I could help people in a meaningful way, but I don't particularly have the personality of skills to do more than share ;)
Bob, I want to be clear that it has nothing to do with people posting how well they're doing. We all celebrate that. None of you should be guilty, ashamed, embarrassed or feel anything less than thrilled about doing well and posting about it. None of you should feel badly about wanting to spend less time in the group because you're back to work or out enjoying life.

I started this thread because there were several posts of people saying that the "negative" stuff was depressing. Some actually said now that they're better they don't want to be around those who aren't, because it brings them down. In the same time frame there were several posts that made it sound like those who aren't doing well just aren't exercising enough, etc.... These were posted by a number of people within a short span. It wasn't a coordinated event and no one deliberately meant to hurt others. But it was still quite painful for those of us who were suddenly being labeled as the downers in the group.

I don't want to label any of those viewpoints as wrong. I understand where each of them comes from.

For many of us Wegs has been like a non-stop tidal wave. Yes, it's very difficult to ride out a bad storm. But how do you deal with it when the storm never lets up and your hopes are continually dashed? How do you still find hope and deal with that kind of grief and loss? You know the expression "battle fatigue." How do you deal with "chronic illness fatigue"-- your own and others'-- when things drag on? That's why I started this thread. :smile1:

Psyborg
05-24-2011, 01:14 AM
Bob, I want to be clear that it has nothing to do with people posting how well they're doing. We all celebrate that. None of you should be guilty, ashamed, embarrassed or feel anything less than thrilled about doing well and posting about it. None of you should feel badly about wanting to spend less time in the group because you're back to work or out enjoying life.

I started this thread because there were several posts of people saying that the "negative" stuff was depressing. Some actually said now that they're better they don't want to be around those who aren't, because it brings them down. In the same time frame there were several posts that made it sound like those who aren't doing well just aren't exercising enough, etc.... These were posted by a number of people within a short span. It wasn't a coordinated event and no one deliberately meant to hurt others. But it was still quite painful for those of us who were suddenly being labeled as the downers in the group.

I don't want to label any of those viewpoints as wrong. I understand where each of them comes from.

For many of us Wegs has been like a non-stop tidal wave. Yes, it's very difficult to ride out a bad storm. But how do you deal with it when the storm never lets up and your hopes are continually dashed? How do you still find hope and deal with that kind of grief and loss? You know the expression "battle fatigue." How do you deal with "chronic illness fatigue"-- your own and others'-- when things drag on? That's why I started this thread. :smile1:

Glad I'm not a culprit :) I don't intend to stop coming here. You guys have helped me understand the situation so much, I want to help others if I can. With our weird disease it's like everyone's journey has some sort of uniqueness to it.

pberggren1
05-24-2011, 01:27 AM
Do you really want to know how I deal with chronic fatigue and other symptoms that never go away?

Chris G
05-24-2011, 01:34 AM
Sometimes I feel like I'm stuck in the middle between those here who are REALLY sick, with things like kidney failure & bleeding lungs, and those who are on their way to achiving some level of health. With my "limited or localized" wg, sometimes I feel like I don't have the right to moan about my complaints, as they seem minor in comparison to some. But, this is a systemic disease, and I AM sick. I have miserable side effects from the miserable drugs we take, and the fatigue I feel daily keeps me from doing things I need to do, and things I WANT to do. Nonetheless, I try not to complain too much - no one wants to be the person who does nothing but complain.

On the flip side.......I LOVE hearing about how well others are doing! It makes me happy that some have come out the other side, are living their lives, and doing things they enjoy doing. It gives me hope that I can get there too. So that's what I cling to, when I feel dissapointed that my original plan of attack has failed. But, right now, while waiting for the rtx to kick in, I still find myself doubting whether I'll get better. The rollercoaster of hope and dissapointment is difficult to deal with.

Leigh & Vdub - Lately, I've OFTEN thought.......what if this diagnosis is a mistake?!? What if it's something else entirely? How will I get better when they're killing my immune system - maybe that's why I'm not improving. I'm not in denial.......it's just that I expected I'd be better within months of starting treatment...... clearly that was foolish.

Sangye
05-24-2011, 01:42 AM
Do you really want to know how I deal with chronic fatigue and other symptoms that never go away?
Hmmm, Phil I suspect that it will be something about religion. If so, maybe we can limit our statements to something like "my faith sustains me" and leave it at that.

jmmilliorn
05-24-2011, 01:49 AM
Understandable feelings, Chris. I can identify with what you are saying. I'll bet I'm not the only one that is tired of examining and analyzing every little ache or pain every minute of the day or night. Is that little ache something new? I'm I getting worse? Is that anything or not? Maybe it is nothing. Maybe it isn't? What if I'm having a new symptom. Is the WG getting worse? My brain is like an overworked, over-heated computer sometimes trying to figure everything out and create order out of the chaos. It makes you paranoid to scrutinize everything so closely, but you can't afford not to. Are your eyes just tired from reading or is you eyesight getting worse? Is that pain eyestrain or are you about to go blind? Is this just a tension headache or one of those really bad temple arteries about to blow? AAAAhhhhhhh! What if the RTX doesn't work? The MTX didn't. Drive's you insane doesn't it, yet you can't just not think about it. Look how all those symptoms were shouting WG and no one could read or understand them for so long.

Sangye
05-24-2011, 01:54 AM
I'll bet I'm not the only one that is tired of examining and analyzing every little ache or pain every minute of the day or night.
Oh yeah, that's a biggie. Wegs is so sneaky and even the Wegs specialists can easily miss a flare. So much depends on us being aware of and reporting symptoms...... makes you nuts. I can't even rely on my lab work to show disease activity. By the time it shows a problem the Wegs dog has been chasing me down the road!!

NicShaf
05-24-2011, 02:11 AM
The thing that I like most about coming to this forum is that there is a balance reality and hope. I feel that I can come on here and talk about what is bothering me with Wegs, and receive encouraging and helpful responses. But at the same time, I know that if/ when I start feeling better, I know that it will be celebrated.
I have a lot of fears about the future and what Wegs might have in store for me, and I find it helpful to read about others experiences on here. Especially because I know that we are a family of sorts here and most of you don't hold back talking about your feelings.
This forum has made me feel like I'm not alone in the world and that I have people who understand what I'm going through. If everyone put on a happy face and acted like everything was OK all the time, I don't think most of us would have that comforting sense of comradery that we feel when we are on here.

Deb Roy
05-24-2011, 02:14 AM
I personally do not have Wegs; my dad was diagnosed in March after months of not feeling well and was in the hospital for nine and 1/2 weeks. He was just moved to a rehab facility. I do want to say that reading the posts and all the support everyone on here has shown to me and my dad has been so comforting to me. I have relayed messages to him from here and he was so surprised to know that there were so many others dealing with this disease. It has helped him out tremondously and I cannot say how it feels physically to have wegs but I can tell you how it feels to watch a loved one diagnosed and not be able to take all the pain and sickness away. I worry about my dad everyday and wonder is he going to have a flare up? What can I do to protect him? How do I cheer him up? I want each and everyone of you to know that every day I think about Wegs and everyone on the forum. Without each of you I don't think I could have been as strong as I have for my dad. I have learned so much more about Wegs from the forum than I have from doctors.

Sangye
05-24-2011, 02:16 AM
The thing that I like most about coming to this forum is that there is a balance reality and hope. I feel that I can come on here and talk about what is bothering me with Wegs, and receive encouraging and helpful responses. But at the same time, I know that if/ when I start feeling better, I know that it will be celebrated.
I have a lot of fears about the future and what Wegs might have in store for me, and I find it helpful to read about others experiences on here. Especially because I know that we are a family of sorts here and most of you don't hold back talking about your feelings.
This forum has made me feel like I'm not alone in the world and that I have people who understand what I'm going through. If everyone put on a happy face and acted like everything was OK all the time, I don't think most of us would have that comforting sense of comradery that we feel when we are on here.
Nicole, what a lovely post! :smile1:

Sangye
05-24-2011, 02:18 AM
I personally do not have Wegs; my dad was diagnosed in March after months of not feeling well and was in the hospital for nine and 1/2 weeks. He was just moved to a rehab facility. I do want to say that reading the posts and all the support everyone on here has shown to me and my dad has been so comforting to me. I have relayed messages to him from here and he was so surprised to know that there were so many others dealing with this disease. It has helped him out tremondously and I cannot say how it feels physically to have wegs but I can tell you how it feels to watch a loved one diagnosed and not be able to take all the pain and sickness away. I worry about my dad everyday and wonder is he going to have a flare up? What can I do to protect him? How do I cheer him up? I want each and everyone of you to know that every day I think about Wegs and everyone on the forum. Without each of you I don't think I could have been as strong as I have for my dad. I have learned so much more about Wegs from the forum than I have from doctors.
Deb, I'm glad the group is helping you and your dad so much. I don't know what it's like to be a caretaker of someone with Wegs. There are difficulties beyond what I can imagine. Recently someone started a thread called Caretakers or something. I know you'll find a lot of support with your questions. Please let your dad know we're all cheering for him.

Lightwarrior
05-24-2011, 02:27 AM
The thing that I like most about coming to this forum is that there is a balance reality and hope. I feel that I can come on here and talk about what is bothering me with Wegs, and receive encouraging and helpful responses. But at the same time, I know that if/ when I start feeling better, I know that it will be celebrated.
I have a lot of fears about the future and what Wegs might have in store for me, and I find it helpful to read about others experiences on here. Especially because I know that we are a family of sorts here and most of you don't hold back talking about your feelings.
This forum has made me feel like I'm not alone in the world and that I have people who understand what I'm going through. If everyone put on a happy face and acted like everything was OK all the time, I don't think most of us would have that comforting sense of comradery that we feel when we are on here.
Nicole, what a lovely post! :smile1:

I agree Sangye. Nicole you very elegantly vebalized my feelings. i spent 20 minutes composing my response to Sangyes starting post and then my computer weireded out and I lost it. There is a balance of reality and hope here. I have lately been feeling despair even though I am the proverbial glass half full person. Being able to vent and knowing that the people in this forum understand what I am going through is valuable. I also think it is important to receive that extra light and energy that people send you.

Sangye, I am sending you light and energy, I consciously do this at first light, mid-day and sundown. I hope you can feel the warmth.

Sangye
05-24-2011, 02:49 AM
Thank you, LightWarrior. How wonderful of you to take that time each day!

I hope your spirits lift. You've really been through the mill.

Chris G
05-24-2011, 03:37 AM
This is a place to share information, celebrate victories, cry about failures, and complain about whatever's on our minds! You do all of the above for us, Sangye.....
SO.....How are you feeling today?? Inquiring minds want to know...... and we're here to listen.......

Sangye
05-24-2011, 03:56 AM
Thanks Chris. I'm feeling a fair amount of trepidation today because tomorrow is rtx infusion #2 of 4. I'm already pretty weak and am not looking forward to losing even more ground. Yesterday (Sunday) was my first day out of the house since last Tuesday! I can't stand being in this basement for that long but there was no way I could venture out sooner. I was in tears by the time I got home yesterday--sheer exhaustion and the pred long gone.

I've had a lot of trouble getting a driver arranged for tomorrow. I'm still a little uncertain about who's taking me. It's a big ask-- we leave at 7 am and get back at around 5 pm. I've entertained fantasies about actually driving myself. It's ludicrous. But the voice in my head who was there pre-Wegs and said "You can do [insert stupid thing]" has never stopped talking. :rolleyes1:

Chris G
05-24-2011, 04:10 AM
This may seem like a really stupid question.......but here goes anyway. I know that pred is evil evil evil, but if it will make you feel a little better, and give you some relief/energy while waiting for the rtx to work, why not increase it slightly? If I recall, you're on really low levels right now, right?

That voice that tells you you can still do stupid things, is hanging around here too. After my 1st infusion, I should not have driven home - but I did anyway. Next time, I'll have my mom do the driving.

Sangye
05-24-2011, 04:35 AM
The pred doesn't make me feel better. I never got the big energy bursts on high dose pred that most people get. It always made me feel much weaker. I don't know what causes this weakness after rtx treatments but it's an awful feeling. Makes my legs tremble.

Lightwarrior
05-24-2011, 05:51 AM
The pred doesn't make me feel better. I never got the big energy bursts on high dose pred that most people get. It always made me feel much weaker. I don't know what causes this weakness after rtx treatments but it's an awful feeling. Makes my legs tremble.

I wish I could make the infusion feel healing and your legs would be strong instead of trembling (I know you miss your walks). I will be thinking of you.

Sangye
05-24-2011, 06:26 AM
Aww, thanks Light. I wish you could, too!

Kathie28
05-24-2011, 11:56 AM
I've recently found myself feeling very down in the dumps with this disease even though I have been feeling better since my last battle with the blood clot. I think it is because I am exactly at the one year point that I have been experiencing symptoms from Wegs though I wasn't diagnosed until January. I just want to feel normal again. I want it not to hurt to walk, I want my feet to be normal size, I want to have energy and to stop gaining weight. I haven't come to terms with the new normal yet. I hate the fear that I might not be here to see my child grow up. This forum helps me in so many ways. It gives me hope, it makes me be realistic, it helps prepare me for the worst and I realize things could be much worse but somedays I just need a place where I can let out some frustrations and say why me.

gurinbasra
05-24-2011, 11:58 AM
I've always thought of this forum as having valuable, helpful, experienced information from supporting people all around the world with WG. I think it's just like talking to anyone you meet in your life - it's full of people you either think are negative or ones that you just "click" with, or perhaps it's with people that are simply struggling with their health. Just because we all have WG doesn't mean we're all the same type of people. I must admit that when I'm well and busy with life, it's again like anything else, we just don't talk about it, however, when things aren't going well, that's when we reach out because we're hurting. Did you know that most languages have more negative words than positive ones, it's no wonder we talk more about the things that go wrong! Maybe that's why it seems like there are more posts with people hurting than those that are doing well.

All I know is that when someone comes across as "negative", did you give them enough compassion to figure out why? Is it really their personality or is it just that they're struggling? And if it is just the way they are, don't you feel sorry for them? If people have issues with the tone of the forum, then close your eyes and don't read on as you can't see past the "tone".

jmmilliorn
05-24-2011, 12:04 PM
Kathie,
I'm battling a blood clot in my right leg, too. I find that elevating it at night helps a lot. I have a wedge for elevating it just right that I bought on the internet. I also wear compression socks all day and take them off at night. I put them on before I even get out of bed in the morning. It has helped to the point that even though my right leg is still 30% bigger than the left, my foot is almost normal again, and i can wear shoes every day again. It has taken several months to accomplish this goal. I try to stay off of it a few hours a day and elevate when I'm not walking about. I also had my first symptom in May of last year--chronic sinus infections one after another and wasn't diagnosed properly until I went to the Cleveland Clinic in Jan. where I also started treatment. I have been up and down emotionally, too, and you are right about finding a new normal. It will get better, and you can enjoy the good days whenever they come even more because of the bad days. Keep the faith. Cherish the good moments.

Sangye
05-24-2011, 12:37 PM
Kathie, that first anniversary is a tough one. The treatment plans are all oriented towards getting us into remission within a year-- maybe even off pred and the other drugs, too. So when that year rolls around and things still aren't going well it can be very depressing. I don't know how you manage that sadness while having a child. I can't even imagine how hard that must be. Hugs to you, dear. :hug2:

Sangye
05-24-2011, 12:38 PM
I've always thought of this forum as having valuable, helpful, experienced information from supporting people all around the world with WG. I think it's just like talking to anyone you meet in your life - it's full of people you either think are negative or ones that you just "click" with, or perhaps it's with people that are simply struggling with their health. Just because we all have WG doesn't mean we're all the same type of people. I must admit that when I'm well and busy with life, it's again like anything else, we just don't talk about it, however, when things aren't going well, that's when we reach out because we're hurting. Did you know that most languages have more negative words than positive ones, it's no wonder we talk more about the things that go wrong! Maybe that's why it seems like there are more posts with people hurting than those that are doing well.

All I know is that when someone comes across as "negative", did you give them enough compassion to figure out why? Is it really their personality or is it just that they're struggling? And if it is just the way they are, don't you feel sorry for them? If people have issues with the tone of the forum, then close your eyes and don't read on as you can't see past the "tone".
Gurinder that was an awesome post. Thank you!

vdub
05-24-2011, 11:35 PM
All I know is that when someone comes across as "negative", did you give them enough compassion to figure out why? Is it really their personality or is it just that they're struggling? And if it is just the way they are, don't you feel sorry for them? If people have issues with the tone of the forum, then close your eyes and don't read on as you can't see past the "tone".
Have to agree with Sangye on this. Well put....

I see huge swings in the tone of my posts and it all depends on how I'm feeling. I also see contradictions in some of my posts and, again, it depends on the mood at the time. I also know that I can be quite a jerk and I realize that it's generally due to the drugs. I just hope my wife understands that.... I think she does, but no one understands the psychological and physiological tolls like the people on this forum.

So when I see a post that might be kind of "stinging" or "attacking", I just shake it off. I understand.....

I'm sure all of you have relatives and friends who are continually asking "how are you feeling". Often times I answer with a fine or great. What they don't understand (and it takes too long to explain) is that the "fine" or "great" is within the context of the new norm. Basically, I hurt all the time. The difference between feeling bad, good, or great is simply the amount of pain at the time, which can change from hour-to-hour. The forum understands that. The relatives don't.

Kathie, you will find the new norm and eventually come to grips with it. It's not that bad. It's very livable. Hang in there....

delorisdoe
05-25-2011, 12:10 AM
I am also a jerk when on prednisone. also, forgetfull, hurried, hyper and a whole bunch of semi psycotic symptoms. I have been getting in trouble alot these last few weeks for somethings that did not go to well the 3 weeks I was on it this last month. I have tried to explain how hard I am trying not to screw up. In fact some of the things I am did seemed great to me they just dont seem to get it. It is so much fun:crying:

vdub
05-25-2011, 01:32 AM
forgetfull, hurried, hyper and a whole bunch of semi psycotic symptoms
Yeap, all of that. The memory loss is very disconcerting for me. I know I forget a lot of things. And, yes, semi-psycotic -- I often feel frustrated, anxious, etc.... I know it's the drugs or at least one or two of them....

delorisdoe
05-25-2011, 03:32 AM
I tried so hard to hold it together. I had to not show my anger when my staff did stuff that I normaly can deal with. I forgot to do so many little insignificant things daily in those three weeks. It seems my bosses decided to notice on my days off and I came into a fantastic email outlining all the little things I missed. lol. I had thought id gotten away with it. I do have to say they are lucky I am off the prednisone right now or they would have gotten an earfull for sure. wait. they are my bosses. I supose it is me that should be thankful.

Daggar
05-25-2011, 06:05 AM
.......It's understandable when people who get strong again want to focus more on the "success" stories about Wegs and feel that those who are not making such progress are sort of a drag or even depressing to be around. I know that isn't everyone, but it has been a common theme cropping up lately. As a result, I've found myself reluctant to post updates this week about how lousy I'm feeling doing the rtx treatments and how much despair I truly have about getting better. Sometimes it can be pretty lonely to still be struggling so much with Wegs and/or complications year after year....

Never hold back... that's what seems to work on this forum. You never know that the one post you neglected to submit may of invoked a "solution" or helped someone.

The forum is much like a visit to the doctor - a good one will include the human condition (social), information, humour, solutions and last but not least "hope"..... It'd be hard to find a forum on illness that focuses on just those who are doing well although they are an important part (hope). That same doctor can give you all the niceties you want but in the end it has to be mixed with straight-talk about your illness or you'll lose confidence in them. I find myself respecting doctors who give you the straight goods now (within reason) because when they deal with children some have a way of sugar-coating things and avoiding the tougher questions.

__________________________________________________ __________________________________________

WG being the robber -- The robbed that smiles, steals something from the thief. ~William Shakespeare

drz
05-25-2011, 07:03 AM
Have to agree with Sangye on this. Well put....


I'm sure all of you have relatives and friends who are continually asking "how are you feeling". Often times I answer with a fine or great. What they don't understand (and it takes too long to explain) is that the "fine" or "great" is within the context of the new norm. Basically, I hurt all the time. The difference between feeling bad, good, or great is simply the amount of pain at the time, which can change from hour-to-hour. The forum understands that. The relatives don't.

..

My take is that many people ask about how you are doing but they mainly want reassurance that you are doing OK. They don't really want any details about our aches, pains, worries, fears, or problems we are having balancing our meds.

I think it is like Tommy Lasorda said: " I found out that it’s not good to talk about my troubles. Eighty percent of the people who hear them don’t care and the other twenty percent are glad you’re having trouble." Tommy LaSorda, LA Dodgers manager

So as long as we are on the green side of the grass and moving around, we are fine, right? :biggrin1:

This forum is probably the main place we can actually share info on how we are really doing, which is what makes it so valuable.

drz
05-25-2011, 07:43 AM
Yeap, all of that. The memory loss is very disconcerting for me. I know I forget a lot of things. And, yes, semi-psycotic -- I often feel frustrated, anxious, etc.... I know it's the drugs or at least one or two of them....

Anyone who has had a steroid induced psychosis knows for sure the drugs influence our moods. Laughing or crying in response to many little things is another big example hard to ignore. I think for me the stress of trying to remember things, like taking my meds correctly, contributes to feelings of anxiety and frustration when I forget something I had planned to do.

pberggren1
05-25-2011, 08:16 AM
Anyone who has had a steroid induced psychosis knows for sure the drugs influence our moods. Laughing or crying in response to many little things is another big example hard to ignore. I think for me the stress of trying to remember things, like taking my meds correctly, contributes to feelings of anxiety and frustration when I forget something I had planned to do.

Been there, done that! I so know how you feel drz.

Kathie28
05-25-2011, 10:53 AM
You guys really are the best. Thank you for all the kind words and thoughts you send. This is a hard road for many of us and no one better understands than those facing many of the same challenges.

vdub
05-25-2011, 11:56 AM
Like Winston Churchill said, Kathie, "we're all in this togeather".


My take is that many people ask about how you are doing but they mainly want reassurance that you are doing OK. They don't really want any details about our aches, pains, worries, fears, or problems we are having balancing our meds.

I get tired of telling people my real situation that I'm "really good for my new norm". So, I usually just say great or not so good. I don't get into details anymore. It's kind of like LaSorda's quote that drz posted.


steroid induced psychosis
Yeap, 24 hours in the psych ward. But, it gave me a new realization and a lot of empathy for people with mental issues.... They go thru hell....

I had my steroid induced psycosis....

me2
05-26-2011, 01:32 AM
I want to comment but I don't have much time before an appt. this morning. I want to talk about the good and the bad. Mostly I'll probably rant about the bad. In real life I don't get to talk much about that so here is the dumping ground for all the pain, dissapointment, anger, and lost hope. I could fill a Love canal with human misery. I've been sick for most of the past twelve years. There have been moments of not being really ill but they are few and far between. I have spent whole weeks laying on the floor of my living room in pain my life deteriorating around me. I have no spouse, no kids, no one that gives the back side of rodent how much I suffer or if I am just found dead some day because I couldn't drive myself to the emergency room once again or fight with doctors to get proper treatment.
Well, I gotta get to this appt.. You know , its frowned upon if I am late- if they are late , well I should just be gratefull to be seen at all by these healthy , capable people who haven't been out of work for the past twelve years. They have it tough you know jamming in people like me to keep all the numbers up.
I"m on pred reduction. You may have noticed it has affected my mood and my usual pleasant demeanor. I"ll try and come back and complain some more later.
I do want to thank everyone who has supplied information, and encouragement here. I remember that too.

jmmilliorn
05-26-2011, 01:35 AM
"My life is in shambles. I need pie!"

Sangye
05-26-2011, 01:57 AM
I want to comment but I don't have much time before an appt. this morning. I want to talk about the good and the bad. Mostly I'll probably rant about the bad. In real life I don't get to talk much about that so here is the dumping ground for all the pain, dissapointment, anger, and lost hope. I could fill a Love canal with human misery. I've been sick for most of the past twelve years. There have been moments of not being really ill but they are few and far between. I have spent whole weeks laying on the floor of my living room in pain my life deteriorating around me. I have no spouse, no kids, no one that gives the back side of rodent how much I suffer or if I am just found dead some day because I couldn't drive myself to the emergency room once again or fight with doctors to get proper treatment.
Well, I gotta get to this appt.. You know , its frowned upon if I am late- if they are late , well I should just be gratefull to be seen at all by these healthy , capable people who haven't been out of work for the past twelve years. They have it tough you know jamming in people like me to keep all the numbers up.
I"m on pred reduction. You may have noticed it has affected my mood and my usual pleasant demeanor. I"ll try and come back and complain some more later.
I do want to thank everyone who has supplied information, and encouragement here. I remember that too.
Kirk, I'm so sorry for all that you've gone through and are still going through. I hope that somewhere in the pred-reduction grief that you can find some compassion for yourself. You deserve that. Your suffering has been tremendous and it breaks my heart. Hugs to you, friend. :hug2:

ScreaminMeanie
05-26-2011, 01:58 AM
I agree I don't know what I would do without you all to talk about all the little details of symptoms, treatments, side effects, etc. There is NO ONE outside of here that understands it well enough and/or that I wish to burden with my fears and anxieties. So, just let me say again how much I appreciate this forum and all of you being here. Some days I feel better, some days I feel worse. Regardless of whether or not I have something to say on a given day, I'm now involved with all of you and care about how YOU are doing. Good, bad, indifferent, I want to hear it all.

Sangye
05-26-2011, 01:59 AM
Never hold back... that's what seems to work on this forum. You never know that the one post you neglected to submit may of invoked a "solution" or helped someone.


Thanks, Daggar. It was tough the past couple weeks on here. I don't know if anyone has noticed but other long-time members also stopped posting during the same period. I miss them tremendously.

jmmilliorn
05-26-2011, 02:22 AM
My friend who owns a mortuary has a saying he repeats when anyone says "Good to see you." to which he replies, "It is always better to be seen than viewed."

Sangye
05-26-2011, 02:27 AM
My friend who owns a mortuary has a saying he repeats when anyone says "Good to see you." to which he replies, "It is always better to be seen than viewed."
ROTFL... Priceless. :laugh:

Lightwarrior
05-26-2011, 02:50 AM
I want to comment but I don't have much time before an appt. this morning. I want to talk about the good and the bad. Mostly I'll probably rant about the bad. In real life I don't get to talk much about that so here is the dumping ground for all the pain, dissapointment, anger, and lost hope. I could fill a Love canal with human misery. I've been sick for most of the past twelve years. There have been moments of not being really ill but they are few and far between. I have spent whole weeks laying on the floor of my living room in pain my life deteriorating around me. I have no spouse, no kids, no one that gives the back side of rodent how much I suffer or if I am just found dead some day because I couldn't drive myself to the emergency room once again or fight with doctors to get proper treatment.
Well, I gotta get to this appt.. You know , its frowned upon if I am late- if they are late , well I should just be gratefull to be seen at all by these healthy , capable people who haven't been out of work for the past twelve years. They have it tough you know jamming in people like me to keep all the numbers up.
I"m on pred reduction. You may have noticed it has affected my mood and my usual pleasant demeanor. I"ll try and come back and complain some more later.
I do want to thank everyone who has supplied information, and encouragement here. I remember that too.

Please let us know how your vist to the ED went. Is your pain better?? This is a great place to vent. Caring relationships can be formed in cyber-space and you are cared about.

ScreaminMeanie
05-26-2011, 02:50 AM
LOL, that's a good one, Mike!

jmmilliorn
05-26-2011, 03:02 AM
LMAO, too. Gallows humor sort of, huh? You have to have an incurable disease (or own a funeral home) to fully appreciate the not-so-subtle nuances of the joke.

vdub
05-26-2011, 10:58 AM
seen vs. viewed.... Yeah, that's not bad... :rolleyes1:

I don't why I thought of this, but how many times has someone said to you "you'll be fine, I know you will, you'll be better in no time"? Uh, yeah, sure, whatever.... I know they are just trying to be nice, but I sure get tired of hearing it. Someday, probably when I'm on some extra steroids and in one of those moods, I'm just going to say "no, I won't get any better, actually, it will get worse and, eventually, if the disease doesn't kill me, then the treatment will"......

me2
05-26-2011, 10:58 AM
Thanks Sangye, I know things have been very difficult for you of late and even though I haven't written about it you are in my thoughts and prayers. You are someone who gives so much here in spite of your own difficulties, you are truely deeply inspiring. I know what it costs you some days to even show up - Bill Gates couldn't afford you. Thank you.

I'm not going to rant anymore for now. I am feeling better after seeing my Jungian Analyst today. (and getting a tooth pulled today at the dentist. They give me drugs which are just now taking effect. The sore tooth wasn't helping when I made my self-pity manifesto this morning. The pulling went well actually. I have a fantastic dentist and his team. We all know how much difference the right practioner makes)

I talked to my Analyst about my post this morning and the effects of pred and the effects of pred reduction after long term use.
He pointed out that some of the 'rage' sometimes needs to be said and reminded me that I could appologize for anything in excess of appropriate. I still want to deal with things as my best self. With pred I am sometimes not my best self (I cannot use the proper adjectives in polite company) Part of me is thankful for the opportunity to have such a worthy opponent and thankful to learn some humility I might otherwise have missed.

I know its been said here before but the right kind of therapist type person to talk to can really be helpful. It surprises me almost every time. Seriously. I go there sometimes thinking "I'm going to quit going. I'll have to tell the poor fellow that this is my last visit." And then I have this awesome session where I feel like I gain so much, so , a stay of execution happens.
The irony is that my insurance, which denied me life saving treatment as I went through their entire appeals process - three levels , including a phone conference (while extremely sick) -- pays for my Analyst. No problem. Talk about ME being crazy.

Thanks for the hugs Sangye. Right back at ya. I hope I get to meet you in person some day. Take a deep breath if you see me, cause I'm going squeeze ya hard.
I hope to meet many of you here. I don't post a lot but I follow your stories. I feel what you are going through and I want you all to get better. I am humbled by the high quality of character I find here and I feel blessed. I went seventeen years without meeting or talking to another person with WG. Then the internet was invented. And now I am not alone any more.

me2
05-26-2011, 11:02 AM
I think it is like Tommy Lasorda said: " I found out that itís not good to talk about my troubles. Eighty percent of the people who hear them donít care and the other twenty percent are glad youíre having trouble." Tommy LaSorda, LA Dodgers manager

Thanks drz, I love a good joke and that is a really great one.

jmmilliorn
05-26-2011, 11:02 AM
I know what you mean VW. Unfortunately, I thought I'd be fine, too when I first got sick. I think that's what upsets us most even more than their wishful thinking. We've already realized we won't and they can't understand unless they get WG, too.


seen vs. viewed.... Yeah, that's not bad... :rolleyes1:

I don't why I thought of this, but how many times has someone said to you "you'll be fine, I know you will, you'll be better in no time"? Uh, yeah, sure, whatever.... I know they are just trying to be nice, but I sure get tired of hearing it. Someday, probably when I'm on some extra steroids and in one of those moods, I'm just going to say "no, I won't get any better, actually, it will get worse and, eventually, if the disease doesn't kill me, then the treatment will"......

drz
05-26-2011, 01:17 PM
My friend who owns a mortuary has a saying he repeats when anyone says "Good to see you." to which he replies, "It is always better to be seen than viewed."

I have heard this many times that it is nice to see you. I understand what they mean since i feel fortunate to be walking around this year. My usual response is "Its good to be seen" along with some comment about being happy to be here. Or being seen is better than the alternative.

Sangye
05-26-2011, 01:48 PM
Aww, me2 I loved your post! I do the same thing with my current therapist. Then he says something that moves things forward and I mentally sign up again. My last one taught me to be gentle with myself and have compassion for what I'm going through. It sounds like your therapist is doing the same for you. It's invaluable. :smile1: