The Long Haul

[Sangye]

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.

[delorisdoe]

I'm gonna think before speeking. This is uncharted territory for me.

[vdub]

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]

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...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

[Thakator]

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]

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]

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
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]

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]

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]

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