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View Full Version : How does your Wegener's Affect your Family?



Jack
12-30-2009, 12:52 AM
Thought I would raise this one as it has come up in another thread and I think it is a subject we can neglect given all the other problems we have to take on board.

In my own case, I can no longer do much around the house and most of the physical work load falls on my wife. We live some way from our families, so can't look there for help. However, the aspect I'm more concerned about is mental strain which I'm sure is affecting my wife and two daughters. They see my condition deteriorating as the years pass and frankly, they're scared!

Doug
12-30-2009, 04:15 AM
Initially, it meant my elderly parents, for whom I was the caregiver in many respects, ended up being my caregivers. Fortunately, I recovered sufficiently to resume these tasks. In three years, however, the extra tasks wore me down to the point my immune system was seriously compromised and I had shingles. My boss called my siblings at that time, discussed my situation, placed my mother in the care center (my father had gone in earlier), and watched me closely until I recovered from the after effects of overwork and shingles.

My situation is similar to what others write about, and my experience with a compromised immune system and overwork is one reason I harp on about weggies recognizing their limitations, weggie families recognizing when their weggie is overdoing it (and stopping them!), and weggies learning how to say "no" to things and situations that are, frankly, more than they are up to.

Sangye
12-30-2009, 09:47 AM
I hope you'll keep harping on that, Doug. Experience is valuable, and I can't do all the nagging in the group! :)

elephant
12-30-2009, 09:53 AM
I can harp and harp... Taking care of two small kids and the long list of stuff you have to do. I just take a nap everyday... and clean parts of the house ( break it up during the week). My family is visiting us right now. They went to see the movie Avartar with my husband and son. I stayed home with my 4 year old, and I'm ok with that. I like staying home more and getting out once in a while. Last night I had my sister look at the WG site's so she could see the stories the we all been thru. Most of my family don't have a clue what this is all about and they really don't want to know. I am ok with that, I just know that I have my limits and that is that. Amen....

coffeelover
12-30-2009, 10:03 AM
because we don't always look sick there is the misconception that we are "healed", so this year I sent out my annual Christmas letter with a note about what Wegeners is and explained in my letter some of my trials and tribulations throughout this past year.
My husband seems to understand the disease and along with Doug, harps on me to slow down and take it easy. Advice that I try to follow, but am not very good at YET! My youngest daughter (age 19) tends to ask "are you sick again?" question while rolling her eyes. I think this is her way of dealing with this. My other two ask questions and listen when I whine, but I really don't think there is complete understanding and that I can understand. I do not want to deal with it every day, why should they?
good thread Jack....thanks for starting it!
coffeelover

Sangye
12-30-2009, 10:19 AM
Lisa, dealing with it is one thing, not having compassion for you is another. You are worthy of compassion!

Barbara1966
12-30-2009, 11:21 AM
My daughter ( also age 19 ) telling me, "Do not be such a drama queen," my son is more understanding he is 21, my husband I think, he do understand but he is never home (he work on a ship ) every time he call, he will asked the right questions but feels like he never listen to the answers.

Doug
12-30-2009, 01:56 PM
Dennis Coffeelover is the ideal spouse for a weggie! Lisa needn't worry about over-doing, because Dennis is there to hold her back if I'm not. You are right, Sangye! It takes a village to nag some people into shape, and there are weggies on this site who benefit from us nagging! It's a living! Barbara- stick to your guns! Your daughter is at an age where (as I'm sure you know- see Lisa Coffeelover's comment above about her 19 year old, too..!) she still sees herself near the center of the universe. Your son and husband probably hear more than you realize, but the message we weggies have to put out about ourselves isn't a happy thing to hear anbout a loved one. Think about what it took for you to comprehend, accept just what WG meant in your life. They have to "get it", too, though they don't have to go through the physical, emotional, spiritual changes we do to reach that point. Keep being a "drama queen" if that's what it takes for you to do what's best for you. Not to point fingers (at elephant) or anything, but there's a new one among us who can nag just as good as you, Jack, me, and some others! That's good! Plus, elephant is managing to get family to read this site. Another plus on her side as the newest nagger! How many times have we said weggies should get their family members to read through this site to get a flavor for weggie life? Elephant, bless her over-worked heart, actually managed to do it!

pberggren1
12-30-2009, 02:58 PM
I think I might need some nagging. Or maybe some sound advice.

I couldn't get a hold of and of my specialists for the last 2 days. My Rhuemy and Neph are out til Jan.4 but my ENT is in Wed. morning. I think I will try and talk to my ENT's receptionist and see if she thinks I should come up to the hospital in Saskatoon and get checked out.

My sinuses seem to be getting slowly worse. There is more mucus, crusting, and bleeding and my right nostril seems to closing off.

The energy level is decreasing as well and the joints don't seem to be getting any better either.

Also my sense of taste and smell is way off as well. I'm getting turned off from eating.

My skin has been itchy as well.

I also started taking some melatonin at night to help me sleep better. I just now saw on the bottle that it says do not use if you are taking immunosuppresive drugs. I am on Cytoxan. Is that considered an immunosuppresive?

Well Sangye, Doug, Lisa, Elephant, Jack and anyone else, hit me with it now.

Sangye
12-30-2009, 03:08 PM
1) Cytoxan is a major immunosuppressant.
2) I don't know if it's true for you, but one sure sign that Wegs is flaring up for me is insomnia and restlessness at night (As treatment works, I can sleep ok again)
3) Itchy skin could be kidney problems.

I suggest you call your ENT early tomorrow morning and get in to see him by the afternoon. He can order blood work and urine and maybe increase pred to get you through the holidays. Too many symptoms of a Wegs flare to wait until next week.

pberggren1
12-30-2009, 03:12 PM
I was just thinking about Pred as well. I thought maybe I am having more of a problem with inflamation and the Pred would take care of that.

elephant
12-30-2009, 03:44 PM
I agree with Sangye. Need to do something tommorrow. Don't want to get worse and then there is more damage. Keep us posted, have a good night sleep.

jola57
12-30-2009, 04:01 PM
Phil, cytoxan definitely a huge immunodepressant so no taking of the sleeping potion. I tend to medicate myself as needed with pred. If you can't see a physician in the next few days because of new years and weekend either go to emergency or at least see if a specialist talks to you on the phone and gives you a prescription for preds.

Jack
12-30-2009, 08:18 PM
I tend to medicate myself as needed with pred.
So do I on rare occasions, but it is not something I would recommend. You don't want to become too off hand with the use of a powerful and toxic drug that has lots of serious side effects.

(just a little reminder there)

(this thread is drifting off subject and I'm being as bad as anyone ;) )

pberggren1
12-30-2009, 08:44 PM
I started it all.

pberggren1
12-31-2009, 05:47 AM
I talked to my ENT this morning and told him my symptoms and that I thought I was having a flare. He didn't want to take my Rheumy's place by prescribing me Cytoxan or anything like that. He thought I would be able to see my Rheumy on Monday. I asked him if I should go to the hospital and get admitted and get IV Pred, etc. He said it would probably be best if he prescribed me 50mg of Pred and Moxifloxacin. The latter was quite expensive, $105.00. Hopefully the Pred will kick in soon along with the antibiotic and hopefully I can see my Rheumy on Monday or Tuesday. Thank God I was able to talk to my ENT today. He said there is no sense making a long trip if I don't have to and spend 5 days in the hospital. He also said it would be doubtful I would be admitted.

Thanks to all of you.

elephant
12-31-2009, 06:43 AM
I understand that no ENT guy should prescribe cytoxan. The prednisone will help, but hopefully you will see your Rheumy Monday. Your really need to get the kidney checked out and get proper treatment. Let us know how the prednisoe is going. Did you take it yet?

Sangye
12-31-2009, 07:25 AM
Ditto to everything Elephant said!

Doug
12-31-2009, 07:45 AM
I wanted to kick your butt first, Phil, but Sangye is feeling better, and beating everyone to be first in line!

Yes. Yes. Yes. Get that appointment ASAP. You are showing too many signs of a flare to mess around with a wait until the start of next year. I hate ENT doctors to hell, but, in a pinch, go with what you can get because the crusting and closing off of your one nostril has to be a major impediment to sleep if nothing else. Let us know if our nagging helped.

Cytoxan is the major immunosuppressant typically in use at the start of treatment of WG flares. Sangye brought that to your attention. Whatever you do, Phil, don't add any drugs- especially herbal or over the counter drugs- into the drug mix you are on without first consulting your doctors. You can slow the progress of your treatment or worse if you don't, and you've already had a sxxxload of WG complications since onset. It would be nice to hear everything was going werll with you for a change, especially the sinus crusting issues because that is one of the more- if not most!- frustrating issues we fight as weggies.

Sangye
12-31-2009, 08:11 AM
That was too funny, Doug. I sure have a knack for being feisty. Even when I'm really sick! That and a sense of humor have kept me alive for sure.

pberggren1
12-31-2009, 12:07 PM
Thanks Elephant, Doug, and Sangye and all the others out there. I will press hard early Monday morning to get my appointment with my Rheumy. I had all my regular blood work done today as well. Most of the results should be back within 48 hours and the ANCA takes about 2 weeks or so depending on holidays, etc. I get the usual blood work done like CBC, blood creatinin, CRP, ESR, etc. My last blood work was the end of November so that is fairly outdated with respects to how fast WG can move. If this does turn out to be a flare I will certainly have learned a lot again from a flare by how different each of our own flares can be within our own bodies not just person to person. I should have pressed harder about 3 to 4 weeks ago. I had already had the sluggishness and joint pain and worsening sinuses. I should have taken action then but I think I was a little bit in denial and affraid to face another flare so soon again with the Cytoxan and Pred. Even though I don't like the Pred I could hardly wait to take it again today because I know the positives of it and the negatives of WG. Yes Doug the sinus issue for me has been the most prominent and problematic issue of all and has led to other problem areas as well. Keep that finger pointing Doug.

Love to you all,
Phil of the north

Doug
12-31-2009, 12:52 PM
The finger points at me, too, Phil! I think your response to symptoms probably is typical of us all.

p.s. I hope it's a false alarm!

elephant
12-31-2009, 01:38 PM
Phil, don't beat yourself up about it. Like Doug stated most of us have been there and done that. So we just don't want it to happen to you. Keep your chin up you will get through this.:)

Sangye
12-31-2009, 02:08 PM
LOL-- And now that you're back on pred, keep your chinS up... (ok, not so funny on some days. most days.)

onatreetop
12-31-2009, 03:25 PM
I could add to this thread having a family and all. My kids say that moms meds are making me wacky. I was really already off the wall kinda wacky. So now............ Getouttheway!!!!!!!!! My husband only knows what I can tell him a sentence at a time and no more than one a month. Dont see him much because of the split shift routine we have and have for over ten years now. I miss him and he knows it because I tell him when I do see him on the way out of the door. the big kids are better 14,13,13 but the 7 year old is 7. So if mom is sick or doesnt feel well then thats what it is. The house falls apart and the days go by. Someone might relieze the dishes need to be done after the sink fills up a couple days but thatsabout as far as it goes at this point. Theolders do more with the seven yearold now but only because I beg them or bribe them too. Otherwise my mother is worried for me for a change and the world keeps spinning!!!!! Keep working because I am afraid that if something where to happen my family would be on the Titanic sinking. i need to getrid of our dept so that they can be okay later. So I am trying to clean up lets say so that everything is more manageable when I cant work like I can now. Until then I guess I ride the crazy train.

jola57
12-31-2009, 04:15 PM
The crazy train, sound familiar. We all do what we have to, with a family of youg ones it is impossible (yes it realy is) not to work a full shift at home. I am glad that my kids are old enough not to need supervision or regular care. My hat is off to onatreetop and everone else with children. Nevermind caring for a family but to work as well is amazing. Besides Jack, who mentiones his daughters often, it is the ladies who cary the home load. I appreciated how silly the request to "take it easy" or "you must rest" is for you. Yes the dishes can pile up , dust bunnies gather but in reality once all the dishes are dirty they still need to be done, and by whom, well by you. So this sentiment of our families to rest is misplaced at best. On that note I now I'm lucky that all in my family understand that mom has to stop once in a while and put up her legs. I even get a tea from my hubby on those occasions where for the last 25 years I can count how many teas I got on one hand.

Sangye
01-01-2010, 03:09 AM
Onatreetop,
Why aren't those older kids taking care of the dishes and cleaning? That's ridiculous! It's true that you won't be able to sit around or rest the way you need to, but they are perfectly capable of contributing to the workload.

They don't lose their childhood by helping in the home. My sister and I did all the cleaning from the time we were in 5th grade or so. We cooked many of the meals, always did the dishes. It was automatic. As soon as everyone finished eating, we got up and did the dishes. No pleading from our parents. It was expected. We both had tons of free time for friends and activities. I was very involved in music and sports in addition to being a strong student.

Jack
01-01-2010, 04:26 AM
I understand the difficulty of getting children to do chores if they have not been brought up with the idea. Mine are as different as chalk and cheese. One will do anything I ask and is eager to please, even more so if it involves earning some money. The older one (coming up for 19 and about to go off to college) is a master at finding something else to do that makes her too busy to help. However, she is very organised and tidies up her room when it starts to annoy her. Perhaps being away from home and having to look after herself will bring out her more practical side.
In the meantime, most of the burden falls on my poor wife.

Doug
01-01-2010, 07:20 AM
For all your wife does, Jack, she must be one fine person. I believe I know you well enough by now to say that I bet you let her know that, too! I propose a second category of people weggies must meet other than each other: the spouses and children of weggies, but especially the spouses.

onatreetop
01-04-2010, 10:57 PM
I have been working on them but like Jack said they werent expected to so now it is easy to find the busy work so I dont ask. I have one who is eager to please, another that is border line and one that is a zombie and harding leaves his bedroom,the oldest. The little one works againist all of us. I am not the best at making sure everything I pull out gets to the proper place either but am more aware than the others. Only because I know I am the one who will deal with it again later. I am just complaining but if they did more without pushing so much , how nice that would be. I am glad that I can still do everything I can too. Very thankful. So......................riding the train and sometimes it is bumpy and sometimes its smooth I am on for the ride!!

renidrag
01-06-2010, 08:27 PM
I have had to watch my wife shovel snow out of the driveways and walks this winter. I was able to make her chocolate chip cookies. She does the laundry and tells me to sit down, sit down. She has been incredible during this process. We are at the point of laughing now, making fun of me and the symptons. Still I feel pretty useless around the house. I have worked as a plumber since i was 18, work is what I do. Now I can't, although the company I work for has put me in the office, thank God, it is still difficult knowing I won't be able to work like I used too. I share my down days with my wife and after a hug, we go on. I would be lost without her. I hope this stays with the thread,
Dale

pberggren1
01-06-2010, 09:01 PM
That's beautiful Dale.

I was diagnosed in early 2003 at the age of 26. I have not been able to hold down a regular, consistent job since then. Your wife sounds awesome. How old are you now? Do you guys have any kids?

elephant
01-06-2010, 10:30 PM
Dale, you wife sounds so nice and understanding. I'm sure she knows you want to help, but can't right now. You aren't useless, you made chocolate chip cookies. Your number one in my book.

pberggren1
01-06-2010, 11:40 PM
Yummy!!! Chocolate Chip, my favorite!!! I wish Boston was closer so I could have a taste.

Sangye
01-07-2010, 01:45 AM
That must be very difficult, Dale. I hope it will be a temporary change for you. We really identify ourselves with our work and our roles with others. It's rough when it all gets up-ended.

Jack
01-07-2010, 03:05 AM
My working life sort of tapered out. I had increasingly long periods of time on sick leave and even when I was at work I was not doing very much because they did not know if I was going to be off again. I had also spent most of the previous two years working at a different plant so I did not feel well established in my new office.
It was a bit sad at the end really. After working for the company for over 30 years, I just went on long term sick leave and never returned. I can't say that I miss it that much because towards the end I could no longer rush around and stay on top of everything as I used to.

onatreetop
01-07-2010, 11:32 PM
I have been lucky enough to be able to work my own hours with my own schedule. All my people know thatmy family is first and that there is a chance I might not be able to make it if I am not well. They are all understanding and helpful. Yesturaday I went to clean a friends house then was going to the Ra appointment and he had caceld all appts for the day. I didnt know so I drove to my primary doc because I knew that I had to do the fallow up from the Er visit and things wherent that improved at all really. So I am sittting in the waiting room as a walk-in and who walks in.....my friend whos house I was just at cleaning. She took one look at me and said are you ok? I told her about the RA appt. and the new rib pain and that I wanted it checked out. So she says you shouldnt have come to the house today ! I told her I was fine in the morning. It wasnt til I left her house and ate that the new pain started. So we sat and chatted together until it was our turns to go back. The doc checked my lungs/ chest throat, etc. He said everything looks fine. I asked why it hurts so bad than and why does it seem harder to braeth. Again he cant find anything. He thinks I am pinching a nerve in my neck. So he my prim agreed to see me again monday. He gave me valium and told me my pressure was ok but my pulse wasnt and that I need to take it when I take the pred to calm me down. So......I guess I get to find out what thats going to be like. But all this was leading to my friend how is like family and so understanding and helpful as I ,Ibelieve, Is making dinner for me and my family friday so we can relax together and enjoy eachothers company. That is a friend that can be better than family.
It took me two years to find a job that I could do and make my own schedule and still be home and around for the kids. i was lucky to find it and have it still. All my clients are now friends too. They havehelped me and my family through so much. I am so greatful.

Jack
01-07-2010, 11:46 PM
I asked why it hurts so bad than and why does it seem harder to braeth.
Sounds like my symptoms before Christmas. Turned out to be pulmonary embolism and pluracy, but it only showed up on a scan. Four nights in hospital and then only allowed out on a home care program.

elephant
01-08-2010, 12:41 AM
You are right Jack! That is what I was thinking. Onatreetop, get this checked out.
I'm going to Nag, Nag and Nag some more.

onatreetop
01-08-2010, 12:43 AM
Thats why I went to te ER. I thought about going to the prim. doc and made an appointment then called the RA and they said go to the ER now!! So off I went. I saw the prim doc yesturday and showed him where the pain was in my back and he said pinched never in my neck. Gave me valum and said you need to relax you are all tince. Funny I thought. i actually laughed out loud. I am keeping an eye on it and it is better today but we will see how the day goes. That you all again for being a great sounding board!!!!!

elephant
01-08-2010, 12:52 AM
Onatreetop, you need to go to the ER and have them order a CT of the lungs. Do you have a pulmonologist? I just think you should not let this go. Sorry for nagging.....but my alarm bells are going off and have not stopped yet...
As Sangye stated before, when we are in a flare, we are more prone to blood clots...

Doug
01-08-2010, 03:30 AM
Onatreetop, dang if elephant hasn't become one of the best naggers since coming on! I almost feel like I don't need to join in on the chorus BUT...! Locate a pulmonologist. The risk of blood clots runs too high for you to leave this situation to chance or a GP. Get that lung CT, like elephant says. You may be holding off because you know your family isn't able or willing to help keep up with the workload you leave, but nothing's more important than leaving it, the work, long enough to have the medical attention you need to assure that they have you long term!

pberggren1
01-08-2010, 08:54 AM
I guess You're playing second fiddle to Elephant now Doug!

elephant
01-08-2010, 09:52 AM
Thanks for the compliments. I'm taking a bow....can you see it... Just Kidding... Doug we still need you to nag. So you are not of the hook. Everyone adds to this forum. I learn everyday from all of you. This forum is the best, next to apple pie cobbler with some vanilla ice cream....

Sangye
01-09-2010, 03:55 AM
Sorry I'm just seeing this now. One of our elder nuns died last night after complications from heart surgery on Monday.

Onatreetop, the most likely causes of your pain are :
1) Pulmonary embolism (blood clot)
2) Pulmonary pneumothorax-- collapsed lung; happens a lot with Weggies; more prone to happen after vigorous activities like cleaning.
3) Rib misalignment-- will either correct itself or you need a chiropractor to get it back in place.

#1 and #2 will cause pain and difficulty breathing. They are URGENT. If you haven't followed Elephant's advice yet, please go the ER and get a chest CT immediately. They need to use a certain protocol called "Pulmonary Angiogram" where they inject dye at a faster rate. This is the only way to look for clots. Even if you feel better today, please go.

#3 will cause knife-like pain. Pain with movement and with taking deep breath. But otherwise you wouldn't feel short of breath.

elephant
01-09-2010, 06:34 AM
Sorry to hear that Sangye.
Onatreetop hope your ok.

onatreetop
01-09-2010, 04:24 PM
I am okay. Saw the pulm doc today the lungs are good and clear. No more signs of nodules either. He agrees there are upper resp issues that need to be addressed and the sleep study monday asap too. Jhu on the 20th and I am calmer now and pressure and pulse down. Pain is better too with the pain med change. I can make it another week and 1/2. Have you seen Killman in the JHU group????

onatreetop
01-09-2010, 04:26 PM
thank you all so much I dont know how I could get through any of this with out all of your knowledge and concern and caring! I thank you all!

pberggren1
01-09-2010, 06:29 PM
Ditto----------

timbo vic aust
01-09-2010, 11:05 PM
double ditto !!!!!!!!!!!!!!!!!!:)

Sangye
01-10-2010, 01:59 AM
Ditto!

Onatreetop, I don't know who Dr Killman is. Maybe a Research Fellow who'll see you before the Wegs doc? You can call and ask.

onatreetop
01-10-2010, 12:54 PM
When I looked him up on the web he was a dept head or something in the vasculatis dept. i have to look again. Made it though the day some how. Now I have to make through the night now. Will see how it goes and pray for a much better morning. If not off I go to the ER. Maybe I should try Philly this time? We will see.

elephant
01-10-2010, 05:44 PM
Onatreetop, if your in so much pain go to the ER. No one should be in pain. Hospitals are very sensitive to people who are in pain. Wishing the best!

Sangye
01-11-2010, 01:46 AM
I agree that you might need something for pain. (I think you were taking something??) BUT be extremely careful and make sure they know you have difficulty breathing. Many painkillers suppress respiration. The combo with valium might be too much.

Doug
01-12-2010, 07:34 AM
I hope you'll keep harping on that, Doug. Experience is valuable, and I can't do all the nagging in the group! :)
That's why I was so happy elephant turned out to be so naggy. Elephant's good ! Yes, I am reminded of Lucy Van Pelt in "Peanuts". She would remark, too, from time to time about what a burden being the resident nag was! Sangye, I am glad to be a nag, if it helps remind people not to take shortcuts on the way to remission or a better state of health. Doctors can be total idiots, too, but we generally are best served by doing what they tell us to do. If fellow weggies feel they might have an idiot for a doctor, then that's where our collective experience can help, too. [I'd like to emphasize, as we did to Gwen, though, that we never want anyone to feel run off the forum because of this nagging! It's done in love and with mutual respect for a fellow weggie. We are in this together!]

elephant
01-12-2010, 10:53 AM
I am glad to nag. I do it because I care, like everyone else on this forum. As a nurse I had to be persistant and nag to the doctors about stuff and nag to my fellow nurses and nag to the patient's that I took care of. I was a nice nagger.

Doug
01-15-2010, 07:07 AM
That's right! I forgot you had a nursing background. Of course you are a good nag (for the very good reasons noted!)! As I've noted elsewhere, I have a profound love and respect for people in the nursing profession. Their nagging helped me keep up on my respiratory exercises, my physical exercises, even my spiritual execises. To the last one, heros of mine!

elephant
01-15-2010, 09:58 AM
Thanks, I had to quit last March because of WG and I'm not going back till I am really in remission. I think I pushed it the last time. I do look forward to going back someday.

onatreetop
01-15-2010, 11:50 PM
Got it.thanks for the nagging. Everyday is different and never the same. I have been trying the pred with and without the valuim and with is much better. The heart pounding out of the chest isnt a fun feeling so slow I go.

Jack
01-16-2010, 02:24 AM
I recommend Atenolol for the heart pounding. You probably only need a small dose.

onatreetop
01-17-2010, 02:46 PM
I see the prim on Monday. I have a list of meds to ask about.The valuim is nice but..................... Cant take it forever.

Lola
03-30-2010, 10:47 AM
[QUOTE=Jack;8486]Thought I would raise this one as it has come up in another thread and I think it is a subject we can neglect given all the other problems we have to take on board.QUOTE]

I think this is a very relevant thread and I would just like to vent.
This past fall it became apparent that I was quite ill. I think my sister read the internet and alerted my 87 year old mother.

Result: Mom spent several panicky months believing that her sole caregiver would die. She watches me like a hawk and NEEDS constant reassurances, many of which I had to lie about as I was gaining my strength.

My 2 sisters evidently believed so, too - so they have ignored me. I recently tried to update them both with good news, but they continue to give me the cold shoulder. 12 months ago we emailed 2-3 times daily and had a lot of fun. WE considered ourselves great friends. Now, nothing.

My kids have had varying reactions: My RN daughter is very concerned and interested. My paramedic son is interested, but my oldest keeps his distance. He does not like to deal with these situations.

My husband spends a lot of energy trying to keep me positive, and is quick to point out how my sisters might be needing to keep their distance in order not to face their own mortality - but it hurts, nonetheless.

I just needed to write this. Wonder if anyone else has had this reaction from family members?

pberggren1
03-30-2010, 11:43 AM
Yes Lola, I somewhat know how you feel.

My parents are wonderful as I now have to live with them.

But I have cousins and aunts and uncles that just don't seem to care or understand and just say get a real job.

Sangye
03-30-2010, 12:35 PM
I'm sorry your family isn't supportive of you, Moyan and Phil. You deserve to be treated with compassion.

JanW
03-30-2010, 11:35 PM
I'm sorry too, guys. It is especially difficult whn you can appear so 'normal.' I have to say that my family has be wonderful and it's great that my kids are a little older but not yet full fledged teens -- they can be very helpful around the house, and aren't completely absorbed with only themselves.

Doug
03-31-2010, 08:06 AM
As the primary caregiver for my elderly parents at the time I became a full-fledged weggie, there were harrowing times for all. None of my siblings lived in town, and the next closest one (in terms of miles) was dealing with breast cancer at the time: The youngest and oldest children were mortally ill! My parents were very, very distraught!

Fortunately for them- and me!- neighbors and church family came together to help them, get places and know they had support in all ways. Toward the end of my hospitalization, they actually showed great signs of near self-reliance. It took lots of pressure off me initially, but, between getting home from Denver and the end of August 2004, it was clear my father was in decline. Neither my mother nor I was able to help him, safely. Once he went into the care center, things eased up a bit on my mother and me.

By 2007, however, her needs began to overwhelm me to a point I came down with shingles (I believe there was a relationship between my lowered resistance and the fact she required more and more of my energy at a time I had little for myself....familiar stuff for weggies!). My boss at the time was aware of my home situation and could see how I'd broken down after a fairly good recovery up through (I suppose....) mid 2006.

He arranged a conference call with my three siblings to up-date them on my health, certainly, but to go over how my mother had become an increasingly greater burden on me than I could handle: They arranged through her doctor to have her go into the care center, where, for the final year of his life, my Dad and Mom shared a room and the end of an earthly marriage that lasted 71 years. They "dated" for five years before they married.

My mother still lives at the care center. I will visit her, usual, in a few minutes, part of a daily ritual that I will follow through the end of her life. She's happy there, they treat her well, she's active in what they offer residents to do, including chapel (this is a Lutheran facility, but they are mindful of the needs of Presbyterians like us- grape juice, please! no wine passes these Reformed lips (well, maybe not that intense!). I live with Louie, my cat, in an apartment that is comfortable but over-priced, perhaps. On the other hand, with my medical history, I hope I can make the decisiuon to go into assisted living, whatever level of care I might need without tying family and friends into knots first.

That was kind of a sad story, rereading it. Oddly, I feel confortable to have lived it. I feel emotionally more fit. Spiritually more fit. Beat up as hell! My quirky sense of humor has had a terrible workout these past few years as I try to make sense of this thing that has befallen me, my life!

What do you tell family when they make demand on you that you can't meet: I want purple orchids on my custom coffin, and gold handles. Can you do that for me?

Lola
03-31-2010, 10:30 AM
Wow, Doug! Great story, indeed.

I find it interesting that you developed shingles from feeling overwhelmed by the responsibilities of caring for your mother. That is most likely the cause of my latest and greatest flare. Those same feelings.

I also find it amazing that your boss arranged the conference call with your siblings. What a great relationship you had at work. Are you still working?

I am on the cusp of retirement, simply because I can barely cope any longer. We moved to our present location across the state 2 years ago. I took care of Mom back there, but she chose to move, too, to be near me rather than one of my sisters. So I had to face leaving my job and friends of 26 years, sell the house I bought on my own, find a new job, and get Mom settled in. She did not settle in well! I'll leave it at that.

I have already cut my work hours in half, and still find that I am pulled in too many directions while trying to regain remission.
Thanks for your story, Doug. It is comforting to me.

elephant
03-31-2010, 10:57 AM
I was thinking the same thing as Lola. Wow! Doug you still are a stitch of fun and your sense of humor keeps everyone going including your cat.
I have no clue what is in store for me, since I have young children...I need to just stay alive.... and hoping the surgeries stop...I might have another one soon. One to remove my big huge giant large, enormous hemorrhoids! OUCH!

Cindy M
03-31-2010, 04:58 PM
I can relate to some of these stories. While I have some family and friends that have stood up to help there are others that have almost turned there back on me. This is not the greatest feeling. I know some don't understand the pain you are in, that you look different because of the preds etc. I guess my saddest thing is that my youngest brother has a real hard time just looking at me. Very rarely talks to me. My sister and I can both be sitting there and he will joke and have a conversation with her and act like I am not even there. We are all in our mid to late 40s so its not like we are little kids. Also one of my friends who I had (before WG) considered one of my closest has done almost the same thing. We do talk but very rarely. I have picked up the phone to call her but it is mostly my effort. These would be the 2 that bother's me the most. I think they need to know that we are also struggling with our emotions as well as the disease and that is not easy.

I was telling a friend from work (currently I am on Extended disability) that I actually get a little excited when I have an upcoming doctor's appt. because it gives me something to plan and I guess look forward to. I can get out of the house and feel like I have a reason or plan to be out. She laughed at me and said I am starting to sound like a little old woman who can't wait for her next outing. I think these people need to take a good look at the quality of life we have. That we can't just pick up a do things like they can.

This really is a great thread. I really feel vented right now. Thanks Jack!

Sangye
03-31-2010, 11:36 PM
It helps me to remember that the way others treat me is a reflection of them, not me. Cindy, your friend who said you sound like an old woman is just revealing her own discomfort about aging, sickness, etc.... We Weggies are terrifying to people. If it can happen to us, it can happen to them. I often say I'm like a walking mirror that shows others their own mortality. All their "stuff" comes out--I don't even need to say anything.

Of course, I don't usually remember this until later, when I'm reeling from what someone said or didn't say. But at least it helps me get back up on my feet.

elephant
03-31-2010, 11:40 PM
Thanks Sangye, you are wise.

Sangye
03-31-2010, 11:48 PM
LOL-- no, I've had a lot of therapy!

JanW
03-31-2010, 11:55 PM
I agree that we are some people's worse nightmare -- often struck in the prime of mid life with random, terrifying symptoms that aren't easily diagnosed, forced to live on medications or get sick and die. It's not like cancer -- no one get 'cured.' People have been very nice to me about it so far -- but I'm not very sick or even disabled (except for my blasted ankle), so I am still able to do all that I could do before, albeit at a much slower pace.

Doug
04-01-2010, 12:54 AM
I retired in January 2009, Lola. To spare those who've read my tale before more of the same old thing, click on my blog link below and read the second tab ("about weggieboy" or something like that). At the time I thought it a bit unthoughtful to be approached to consider early retirement, then I discovered I have the perfect aptitude for retirement. If you can manage the swing into retirement financially, still be aware the extra time spent with others at home may add to your burden. It's that old "doesn't look that sick" business we deal with.

Even though she's turned out to be one of the more effective nags to come down the pike, elephant really is a softy I feel. I hope you, dear elephant, use the rest of your life growing into that wonderful calling, the person who straightens everyone out. (Only as needed! Ha!) It's especially difficult to have youngsters and have to deny them anything they need because of your health issues, but elephant seems very likely to help her kids grow up to be loving children, sensitive to the needs of others.

Cindy M.'s experience is sad but typical. A variation I ran into, though, was over-solicitousness: there was a time, finally, when I didn't need some help that people had grown to expect me to need. Especially in the workplace, where youth is worshipped (well, it's easier to look at, and you can hire it for much less money!), weakness is off-putting to some, a sign for replacement for others, or that sign of what's to come (mortality issue).

Frankly, I feel physical illness is a way to ease us into a state where death, if not sought, is accepted more easily when it comes because, well, the pain ends! In expressing such thoughts among healthy people of any age, we scare them. I believe my thoughts amplify on Sangye's thoughts on that topic. Richard, a long time ago, proposed WG as our BFF, so it is natural we talk about it, to the discomfort of some, family and friends being the ones most vulnerable to our babble.

There!

Jack
04-01-2010, 01:07 AM
Frankly, I feel physical illness is a way to ease us into a state where death, if not sought, is accepted more easily when it comes because, well, the pain ends!
I've been considering starting a thread about death, but was a bit unsure about how it would be accepted. I must admit that it is something I consider, but not in a depressing way. I don't want to go into it here - wrong subject. ;)

JanW
04-01-2010, 01:24 AM
I think you should start the thread, Jack. I am sure it would be helpful for many, like everything else that you post.

Doug
04-01-2010, 01:29 AM
A thread on death could be beneficial but difficult to manage because religion and politics, most definitely, are a part of the process.

(Both are banned from the forum, as you remember, though the discussion on health care reform in America somehow passed a literal enforcement of the rule.)

Sangye
04-01-2010, 01:54 AM
I think it'd be a good thread.

Jack
04-01-2010, 02:24 AM
OK I'll start it in the next day or so. I think we may have to suspend the religion ban if that is OK with Andrew. I'm sure we can manage to run a thread without starting any wars! ;)

Lola
04-01-2010, 03:01 AM
Excellent stuff from everyone! Cindy, you expounded on some of the feelings I've experienced over the past 8 months.

Doug, you are just plain eloquent, and I agree with your assessment of dear Elephant. Jan and Sangye are both very wise.

Jack, I look forward to the next new thread. It might have scared me to death several months ago, but I am ready to discuss it now.

Lightwarrior
04-01-2010, 05:58 AM
I think it'd be a good thread.

I agree, its all part of the life circle. Talking about death may help to reduce the fear factor. With our without Wegeners we will all die, and we all have people in our lives who will die. I think this forum is stacked with natural healers each with our own strengths. Some of us have medical backgrounds, that's not what I mean by natural healer, everyone reaches out with their own unique knowledge to keep the rest of us going. I guess I haven't run accross someone on this forum who is not who I consider a natural healer.

elephant
04-01-2010, 07:28 AM
Death is part of the journey that is going to eventually going to happen. So I am not afraid to discuss it either. We all have been through some really rough hellish times, and it is natural to fear it but at the same time if it happens it happens.

Jack
04-01-2010, 07:58 AM
New thread started here - http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/691-your-thoughts-dying.html

pberggren1
04-01-2010, 06:29 PM
Good idea Jack about the new thread. I have just read the first few posts - much is what I expected.

QBAW
03-14-2011, 10:02 AM
Hi, I am new to all this but not because I have Wegeners! My niece is now 19 and was diagnosed when she was 15 after having been ill for sometime. She is in remission and is leading a normal life for a 19 year old. We want to know how we can help as a family, she tells us the stuff we need to know- like that she is still in remission but when we ask about other things that she wants to do and if its been okayed by the doctor it just comes across to her that we are interfering. She is a typical 19 yr old who feels that anyone over the age of 25 is old and because she was diagnosed so young she feels she has missed out on a lot of things and is trying to make up! She has been talking about tattoos and body piercings as some of her friends have them and obviously she goes out at the weekends, sometimes going to her work the next day with very little sleep and also drinks most of the nights that she is out. She seems to think she knows what she can and cant do, but cannot answer some of the basic questions you have addressed in the newbies sections. Her and her mother tend to bury their heads when it comes to the not so pleasant realities of the illness.And whilst we understand that no one wants to accept they have an illness such as wegeners but we also want to make sure she has all the info so that she can make more informed decisions for her own health. Is there any advice or info you can give me?

pberggren1
03-14-2011, 10:53 AM
It would be nice if she could join the forum here, but if she is leading a relatively normal life with work and play she probably doesn't feel like she needs the answers or support of a forum like this. Unfortunately she may have to learn the hard way if she flares again, but hopefully she will mature and realize her lifestyle has to change.

Do you know what her original onset symptoms were and what damgae was done?

drz
03-14-2011, 11:36 AM
Hi, I am new to all this but not because I have Wegeners! My niece is now 19 and was diagnosed when she was 15 after having been ill for sometime. She is in remission and is leading a normal life for a 19 year old. We want to know how we can help as a family, she tells us the stuff we need to know- like that she is still in remission but when we ask about other things that she wants to do and if its been okayed by the doctor it just comes across to her that we are interfering. She is a typical 19 yr old who feels that anyone over the age of 25 is old and because she was diagnosed so young she feels she has missed out on a lot of things and is trying to make up! She has been talking about tattoos and body piercings as some of her friends have them and obviously she goes out at the weekends, sometimes going to her work the next day with very little sleep and also drinks most of the nights that she is out. She seems to think she knows what she can and cant do, but cannot answer some of the basic questions you have addressed in the newbies sections. Her and her mother tend to bury their heads when it comes to the not so pleasant realities of the illness.And whilst we understand that no one wants to accept they have an illness such as wegeners but we also want to make sure she has all the info so that she can make more informed decisions for her own health. Is there any advice or info you can give me?

Is she under care of a doctor with experience in treating Wegener's disease? Can you express your concerns to that doctor? If she feels happy with her current life, she doesn't sound likely to listen to any helpful advice regardless of how well intended.

Palmyra
03-14-2011, 12:57 PM
Great topic Jack, thank you for bringing it to our attention.

I am a 'family member' here because my daughter (now 25 yrs,) has been chronically ill since the age of 14. It changes your life as a parent. Many studies have been done regarding the impact of a child with cancer and how it affects the entire family...parents, other siblings, and more distant relatives. One's entire focus goes to the infirm child, often at the expense of other family members. Simply put, my experience has been that everyone adjusts with time. Things were heartbreakingly difficult at first (I can so relate to QBAW's post....these sick kids just want to be 'normal' no matter how squewed their perception of 'normal' is...they just want to be free and fit in).

To QBAW I would advise...set the same limits you would on any 19 year old...be consistant, and consistantly supportive. She is special and unique, just like everyone else (ha!) Her brain doesn't really mature until she edges toward 24-25.

To much relief, with time and age also comes maturity. That said, I am still here because of the financial/emotional dependence this disease has created.

aewaustin
03-14-2011, 01:22 PM
QBAW I was diagnosed with Weg's when I was about to turn 21, and not dwelling on the disease is what got me through it. I am sure your niece just wants to be "normal" and put it behind her. As long as she is getting regular check-up's I would just let her live her life. Thankfully she is in remission. When I went into remission in 1994 I stayed that way until 2003 and I never thought of Weg's, it was nice. There is a chance that she will have to deal with Weg's again, so while she is in remission just let her enjoy it without thinking of the disease...

vincelv
03-14-2011, 03:56 PM
i think my family doesnt understand,,and since i dont make it a big thing i think they dont take it as serious...like they have called me germaphobe..but if they were in my position they would be scared to get sick too..

Jack
03-15-2011, 12:16 AM
Keep going to the check ups and have all the blood tests then live as normal a life as possible. There is a lot to be said for maintaining the quality of life and worrying about the quantity when the time comes. :wink1:

JanW
03-15-2011, 12:49 AM
I agree with Jack. If she is truly in remission and on a schedule that her doc (not her) sets as appropriate for her disease patterns AND she isn't in complete denial of her disease, she should be allowed to live here life as any 19 year old would. As many here have said, they go into remission and end up living a pretty normal life for a fairly long time, and there's no reason to think she couldn't be one of those as well.

Sangye
03-15-2011, 01:38 AM
I agree with Jack and JanW. :smile1:

Jack
03-23-2011, 09:05 AM
On the original subject of How does Wegener's Affect your Family? - how has it affected your relationship with your partner if you have one?
It put such a strain on my relationship with my wife that we separated for several years after my wife decided that this was not the way she wanted to spend her life. We were both in our mid 30s at the time and had known each other since leaving school. However, we never made a clean break or got divorced and were always helping each other out so when it all went pear shaped for my wife I asked her to come back. I think that on the whole this has turned out well. Perhaps not the life either of us had planned, but OK in many ways. I hope that my wife does not feel too short changed by my deteriorating health, but I guess that she has received a lot in return.

Daggar
03-23-2011, 10:35 AM
Interesting question.... even as a parent I've definitely noticed the strain you refer to. Like previous discussions on here, everyone deals with illness differently and my wife chooses to "avoid" the issue as much as possible. It has made it very difficult at times and that is why I'm probably an "overbearing" advocate for Holly. In my wife's defense she just lost her mother two years before Holly's illness and her father a year before so it has been a tough few years. As far as your wife feeling short changed -- as a caregiver I'd lie if there wasn't the odd time when you feel sorry for yourself but one look at what your loved one is going through seems to kick that in the butt very quickly! Your wife is there... that's the bottom line.

delorisdoe
03-23-2011, 11:51 AM
I am truly amazed that my husband stayed with me through and maried me after my treatments. Cytoxan robbed me of alot of what makes me a functioning female lol. Prednisone made me fat ugly and cranky. He is amazing.

LisaMarie
03-23-2011, 11:53 AM
Congrats to you all with supportive families....please know how truly blessed you are....i have support from my sister in law and my work family and some of my church family....my parents are concerned but my mom is the type of head in the sand til it hits the fan then deal with the illness...my dad is as supportive as he can be...he dows not really understand it and is amazed i still work...my husband is having the hardest time....he was in big denial til i almoat died last September/October....then he was scared...now that i do more he is back on denial...or what Ever he wants to call it...it has put a hugh finacial stren on us..but eveytime i over do it..i pay dearly..then it is like a competion on who hurts worse when i try to explain..my family practice doc is going to try to talk to him....the kids at home 14,12,& 9 all act like chores are a death sentence...my 16 year old is staying with my parents...but he gets it....he hates WG and that i have it but he knows when i push it what happens....he has seen his mom working 70 hrs a week and attending all games and school functions to working 32 hrs and not allowed to go to function due to low immunity or fatigue...My sister in law takes me to Mayo and lets me vent and my work family is awesome..so it could be worse...i am a giver of 110% and usually see life in a glass half full but i will say this is not the life I planned and i have roller coasters..especially this one:crying::crying:

pberggren1
03-23-2011, 12:06 PM
Jack, you are one awesome dude. Kudos to you for trying to make your marriage work. And your wife must be awesome too. But it does go both ways, even when we are faced with illnesses such as these. I hope you have many more awesome years together and can grow from the hard times, that is what life is all about. Supporting one another and being compassionate and understanding and patient. It is hard for others to understand what we go through but at least your wife came back and is with you for the long haul to support you in whatever way possible.

Daggar, you are one awesome Dad. I can totally relate to what your wife is going through with the death of her parents even though I still have mine. Please continue to be a strong advocate for Holly. She will need it all her life. We all do.

delorisdoe, Where do you live in Canada? It is so awesome that you have such a wonderful husband who sees you for who you truly are.

Lisa Marie, You are very strong and I am so happy you have support at work and church. Any support can make all the difference. I hope your sister will be with you for many years to come.

delorisdoe
03-23-2011, 12:21 PM
I live between hamilton and toronto, closer to hamilton. I always wonder why he has stayed with me. sometimes im afraid of the answer so i just dont ask. I tend to behave that way.

pberggren1
03-23-2011, 12:22 PM
As long as you two have a healthy relationship that is all that matters delorisdoe.

delorisdoe
03-23-2011, 12:30 PM
Im not so sure it is healthy...that is why i am amazed. :)

leigh

ArlaMo
03-23-2011, 12:32 PM
I won't lie - it has been a difficult year! My husband is a physician, so in some ways, it is even harder on him. He's an ortho, so most of his patients are "fixable." He can't "fix" me and I think that is a huge blow to him. We couldn't even figure out what was wrong with me for about 6 months, but I am so grateful he was with me because he eventually did figure it out.

We spent the first 17 years of our marriage poorer than dirt while he was in school, residency, fellowship, etc. We had so many big plans for when he was finally done. And my poor health really curtailed those plans - he tries really hard not to make me feel guilty, but I know he wants to do all the stuff we planned. I was also the one to do EVERYTHING at home all those years - he was gone so much. I think the whole family got so used to that. The kids do help, but...they're still kids. They make messes. They are busy. They are used to having a mom who took care of a lot.

One thing my husband has been really great about is the appearance side effects - I'm the one that has the harder time with those, for sure. Being almost bald, gaining so much weight, having my face covered with steroid acne - I tend to hide out at home rather than going anywhere because I hate how I look. He's so good to make sure I know he still thinks I'm beautiful :blushing:

We'll have our 20th anniversary this summer - I hope I'm in remission by then and that we can start doing some of those things we had planned!

drz
03-23-2011, 12:56 PM
We take turns on the care taker role. Before I got diagnosed with Wegener's I was the care taker (spouse has cancer that is incurable but has been slow growing). When I got real sick with Wegener's we switched roles. When I started to recover into a drug induced remission, I became the care taker again. I believe the stress of my illness contribute to her resurgence of her cancer. It is really tough right now when we both are sick and not able to handle any care taking for each other. Neither role is easy but i think the care taking role is harder when a family member is doing poorly. It is a little easier at times when you both have chronic life threatening illnesses and you know you need each other because neither one is capable of taking care of them self (at least not for long).

Daggar
03-23-2011, 02:58 PM
.....I won't lie - it has been a difficult year! My husband is a physician, so in some ways, it is even harder on him. He's an ortho, so most of his patients are "fixable." He can't "fix" me and I think that is a huge blow to him. .....

Wow! It's got to be tough to be in the medical field and realize how difficult this disease is to deal with. We met a couple at the Children's Hospital when Holly was admitted that had a 4 year old daughter diagnosed with leukemia.... both parents were physicians.

I also have to mention that it is hard on siblings of young WG patients because they do feel that their world has been turned upside down as well. Holly's sister Shelby has been very good in dealing with it but there are times I really feel for her as well. There are things the family used to do together but now we have to be careful for Holly's sake. Everything has to be scheduled so that Shelby continues to do the things she normally does which usually means one parent with her and one with Holly.

Taking care of young children while dealing with WG would also be high on the list of "amazing accomplishments"!!

RCOSSIO
03-23-2011, 11:52 PM
My wife is my biggest supporter...but I have not stopped. I continue to enjoy my outdoor activities, 20 mile bike ride, boating this weekend and golf at least twice monthly. But really its her support that I live life in the "NOW".

My next venture is getting back to the ski slopes...after a four year hiatus.

Yes there has been moments when I am physically worn...but it was when WG started rebooting its system.

But what I am really saying is...with all of our family support, the ONLY ONE WHO CAN UNDERSTAND WHAT TRULY IT MEANS TO BE A WEGGIES IS US...and for that I am greatful for all of you :thumbup:

JanW
03-24-2011, 03:39 AM
What Richard says. I think that the people on her understand the best, and compassionate, experienced docs the second best. Family is third best but they come from a place of emotion and I think that it can be hard for them to know what to say and what not to say, how much to help and how much to hang back. For instance, I would prefer now for my husband to not come to doc's appointments (and he doesn't) because I'm pretty well right now, and I also feel that as an adult I would just prefer to have that private, one-on-one relationship with the doctor. I also don't want my family coming on these boards - I feel that this is a private place for me just to vent or ask questions without getting other people worried.

I've had a relatively easy time of it, but there's no doubt this is life changing.

Daggar
03-24-2011, 04:25 AM
.... the ONLY ONE WHO CAN UNDERSTAND WHAT TRULY IT MEANS TO BE A WEGGIES IS US...and for that I am greatful for all of you :thumbup:

Completely understood!! :thumbup:

That is why I had trepidations in even joining the site -- guest only for the first 3 months reviewing some of the posts. Holly wouldn't until I had and even then she is more interested in connecting with kids her age who are dealing with similar issues -- ie school/friends/etc.

Sooooo.... if I ever ask a question or make a comment that seems out of line.... let me know!

Holly has begun to take some responsibility in her treatment and scheduling but meeting with the doctors is a must at this point. I find myself backing off more and more in hopes she asks questions but I still have to sit down with them afterwards to go over concerns. I'll be there until she kicks me out!:huh:

I guess that's the "dependent" side of the coin as opposed to the spouse.

Sangye
03-24-2011, 04:38 AM
Daggar, you are always welcome here.

I think it's great that you're teaching Holly how to participate in her own care. :smile1:

delorisdoe
03-24-2011, 04:40 AM
I dont know if i have ever asked a question about it at all in the ten years ive had it. I really dont remember.

JanW
03-24-2011, 04:57 AM
And I think that it's great that we have spouses here too, like Brian, whose spouse wants them to be here.

But I completely see why at the Symposiums when they have the caregivers forum they say ABSOLUTELY NO PATIENTS ALLOWED.

We all have different needs and reactions. And, yes, it's hard feeling like a child (or dependent on) your spouse. I'm a very aggressive patient (as he would be), and he was asking all of the questions before I could even get them out of my mouth, which made it seem like I didn't have the questions (or was scared, or whatever).

I ask a lot of questions, and even if I didn't have a question (which I always do), I would 'make up' a question to engage the docs. Doctors like patients who are engaged in their own care, and ultimately, you just get better 'service.'

Daggar
03-24-2011, 05:38 AM
For adults - I guess it depends on "personalities".... whether you are the hands-on type or more reserved makes a big difference on the type of care you get. I'm like you and I'd ask a lot of questions and want to be in control of it so there's no confusion....

In the case of children -- we're lucky there are "Children's Hospitals" and Pediatricians who are very good at working around the complications involved but parents should be there.

Holly was very shy and reserved around the doctors at first but she's making progress in that area and I believe she'll become more "independent" as she moves forward.

THere are also cases where the patient is so ill that they definitely need an advocate there with them - I believe there are a few on this site that are in that situation.

Daggar
03-24-2011, 05:43 AM
Sidetracked here but... how many have access to their specialists on a daily basis? ie email, phone, etc.

Or is it wait until the next appointment for most?

pberggren1
03-24-2011, 05:47 AM
I can phone or e-mail him every day if I want and I know where he lives and works as well. He is usually at the hospital every morning so if it is something urgent I can just go there and track him down, he does not mind that at all.

Daggar
03-24-2011, 06:07 AM
this was too good to pass up .... with the spouse & family connection...



909
The wife and I were sitting around the breakfast table one lazy Sunday morning.

I said to her, "If I were to die suddenly, I want you to immediately sell all my stuff."

"Now why would you want me to do something like that?" she asked.

"I figure that you would eventually remarry and I don't want some other asshole
using my stuff.."

She looked at me and said: "What makes you think I'd marry another asshole?"

ArlaMo
03-24-2011, 06:39 AM
Sidetracked here but... how many have access to their specialists on a daily basis? ie email, phone, etc.

Or is it wait until the next appointment for most?

Since I flew out to the Cleveland Clinic, I'm thinking I would need to work through my local doc who contacts Dr. Langford. That's how it has been so far. I haven't really had anything urgent come up since I visited CC in January. I have pretty good access to my local docs, but my husband works at the same clinic and they're pretty nice to me :wink1:

Jack
03-24-2011, 08:08 AM
I can pick the phone up at any time during the day and get through to the clinic. They usually tell me to come in immediately if necessary or at the next clinic day if it is non urgent and they will arrange for a doctor or one of the specialist nurses see me. Out of hours, I have been told to present myself at the ER or even on the ward at the hospital I attend.

drz
03-24-2011, 08:28 AM
Sidetracked here but... how many have access to their specialists on a daily basis? ie email, phone, etc.

Or is it wait until the next appointment for most?

My emails or phone calls get some response the same day so far. I haven't tried contacting him on a week end but then I would probably be getting care through some local physician who would contact him for consultation. When my regular rheumatologist is unavailable he has staff cover for him who were involved in my hospital care and remember me as a patient and they would provide consultation or answer my questions.

drz
03-24-2011, 08:33 AM
Since I flew out to the Cleveland Clinic, I'm thinking I would need to work through my local doc who contacts Dr. Langford. That's how it has been so far. I haven't really had anything urgent come up since I visited CC in January. I have pretty good access to my local docs, but my husband works at the same clinic and they're pretty nice to me :wink1:

Such professional courtesy really goes a long way in getting the best car possible. It is also easier too since they don't have to translate everything into English for you since your husband speaks doctor.

Sangye
03-24-2011, 08:58 AM
I don't have Dr Seo's direct email (I don't think he gives that out) but I do have his receptionist's. I ask her to pass on any questions to Dr Seo. He usually sends a response the same day, sometimes so quickly that I wonder how it got to him so fast! Every so often there's a delay hearing back. The only other way I have to reach him is to call his receptionist but that usually means leaving a message.

The few times I've paged him on the weekend I get a covering doc-- research fellow. Those are usually times when I need to go to the ER anyway. One time he did call back when the research fellow paged him. This whole system works okay for me now. I don't have as many crises and I've learned how/when to go to the ER when I do.

jola57
03-24-2011, 02:02 PM
Just as we are different, so are our loved ones responses to our appearance and wegs. Arla, my husband is an anesthesiologist and for him it also is a trial because there is no cure. At the beginning he read all that he could about the disease and now he is just plain resigned to my fate. He has changed just as I had to and we adjusted the household rythm. Where I used to clean, and do other household chores, it is now his duty to dust and vac as my days of wielding the vacuum are over.

RCOSSIO
03-24-2011, 02:45 PM
Jola...I can't believe it....poor Arla.

But hey...I also hated vacuuming, hence why I put tiles all throughout the house. :thumbsup:

Sangye
03-25-2011, 02:41 AM
LOL I wield the vacuum but to do a tiny room it takes me about an hour. I do a little and have to sit down and rest. Pathetic! :rolleyes1:

LisaMarie
03-25-2011, 04:47 AM
one day i will have a house of tile floors....would give anything to get rid of the carpet....my husband swears it is no practical in missouri...but being from miami florida i know it is much better....now if i can just find the deals on tiles here...i used to find in florida i would be set...i avoid vacuumning as it also wears me out...but on rare ocassion i tactile the beast....and depending on the day i kind win....lol...i don t need nap afterwards.....I still hate WG...but am learning it is what it is....and i am gonna have to adjust...ughh....yes the italian is coming out...i do not give in easy...guess i will learn:ohmy:

RCOSSIO
03-25-2011, 05:05 AM
Yes tiles are the best especially how easy they are to clean. Florida is popular for tiles...even ROOF's :w00t:

Jack
03-25-2011, 07:47 AM
Tiles and solid floors in general are not best for a cool damp country like England! It has been very fashionable over the past few years for everyone to replace their carpets with wooden flooring, but many are now laying carpet back over the top because it is too cold. We have a similar problem with wet rooms in place of showers. A nice idea, but the room never dries out!

I have carpet everywhere except in kitchen and bath rooms for hygiene reasons. I prefer comfort to fashion and practicality. :wink1:

RCOSSIO
03-25-2011, 07:57 AM
Jack its time to move to Florida...beach, sun and hot bods!!!!

Sangye
03-25-2011, 08:09 AM
I prefer carpet--easier on my joints and I'm less likely to slip. Without carpeting my big dogs go running around with their legs sliding out from under them--easy to rupture a ligament. And the floor is always dusty and hairy. As soon as you clean it--blech! Since Maryland is so damp in the winter, a cold floor makes the whole house chilly.

Jack--what's a wet room?

ArlaMo
03-25-2011, 08:38 AM
I prefer hardwood floors - my hubby and daughter have allergies and carpeting is awful for allergies/asthma sufferers, especially in SE Washington - it is allergy central here. My dad did reclamation construction and I worked for him one summer back in high school - if you could see what is under carpeting....GROSS!! Even the cleanest homes - I'm not a big fan of tile, but I LOVE hardwood.

pberggren1
03-25-2011, 10:17 AM
I prefer hardwood the best. But there are some tiles and laminates that are quite nice as well. A lot of new homes here have in-floor heating on all levels so your feet never get cold and the whole house feels warmer over all. Even many older homes are retrofitted with in-floor heating. My dad is a flooring installer by trade and have helped him on many jobs over the years and lifting up old carpet in what seemed to be very clean homes was very disgusting.

RCOSSIO
03-25-2011, 10:24 AM
I believe all of you should
Move to FLA and enjoy the weather and your home with 24 x 24 tiles. Heck you can always come to the beach take your shirt off and hang with the celebs. In fact, we can go boating and fishing and then get online and discuss "How to escape a room":drool:

delorisdoe
03-25-2011, 10:29 AM
I am pretty sure nobody wants to see me with my top off.

drz
03-25-2011, 10:47 AM
I prefer hardwood the best. But there are some tiles and laminates that are quite nice as well. A lot of new homes here have in-floor heating on all levels so your feet never get cold and the whole house feels warmer over all. Even many older homes are retrofitted with in-floor heating. My dad is a flooring installer by trade and have helped him on many jobs over the years and lifting up old carpet in what seemed to be very clean homes was very disgusting.

The in floor heating is really nice in bathroom in winter time. No cold feet when you get out of shower. Probably not as necessary in rooms with carpeting since this avoids the cold feet feeling but it does also help reduce the dust build up from forced air heating. Still an issue though in summer time with central air conditioning. I haven't seen it yet but guess they also have in floor AC sort like what they put in car seats today. Anyone have that?

Ginger
03-25-2011, 12:41 PM
I'm very thankful that i have my father when it comes to thois disease. WIthout him, i wouldnt behere right now.

Other poeple in my family aren't exactly the kind of poeple to deal with these kinds of things. but w/e i have my dad to help me, and thats all i really need
:o
What really hurts is when your peers at school talk down to you, thinking your making the whole thing up, and when you miss a week of school, they roll their eyes, and say " oh great your sick AGAIN?"

Thats when the pred kicks in and i can't help but give THEM the WG nose, hehehe....:predrage:

cuz really, it's none of their business.

Sangye
03-25-2011, 01:21 PM
Ginger/Holly, you are learning some tough life lessons awfully young. You hang in there, Lil Weggie. :hug2:

Sangye
03-25-2011, 01:23 PM
In fact, we can go boating and fishing and then get online and discuss "How to escape a room":drool:
He.did.not.just.mention.The.Room. Oh no, he didn't.

pberggren1
03-25-2011, 04:32 PM
Richard and Sangye, I forgot all about the ROOM.

I would love to come to FLA but can not handle the heat and humidity, but the tiles sound nice. If I were to take my shirt off one would have to notify the general public, NASA, the Navy and Air Force and Air Traffic control because I am so white I would blind anyone that would look in my direction.

Holly, you will get through this. Your peers at school your age are not mature enough yet to understand what is going on with you. I am very glad you have your Dad. That is very important.

Jack
03-25-2011, 08:41 PM
Jack--what's a wet room?
Instead of having a shower enclosure, you tile and waterproof the entire room (or a large area where the shower is) and have a drain in the floor. This gives a nice unrestricted shower area, but the entire room tends to get wet. This is fine in hot countries when it dries quite quickly, but miserable in England unless the room is very well heated.

pberggren1
03-26-2011, 04:51 AM
What is the point of such a large type room in which one can shower?

Daggar
03-26-2011, 04:55 AM
although nicely set up Phil .... nooooooooooo..... i will not touch that......... :blushing:

Jack
03-26-2011, 06:40 AM
What is the point of such a large type room in which one can shower?
The holiday home I used last year had one and it was ideal for the wheelchair. In fact they even supplied a plastic wheelchair for use in the shower!

http://www.apollo-plus.co.uk/Design/wetroom2.jpg

For the more able bodied, it is quite nice having all that extra space or there is room to share with a friend! :wink1:

pberggren1
03-26-2011, 07:47 AM
I guess I will have to find a friend to shower with.

BrianR
03-26-2011, 08:45 AM
I'm very thankful that i have my father when it comes to thois disease. WIthout him, i wouldnt behere right now.

Other poeple in my family aren't exactly the kind of poeple to deal with these kinds of things. but w/e i have my dad to help me, and thats all i really need
:o
What really hurts is when your peers at school talk down to you, thinking your making the whole thing up, and when you miss a week of school, they roll their eyes, and say " oh great your sick AGAIN?"

Thats when the pred kicks in and i can't help but give THEM the WG nose, hehehe....:predrage:

cuz really, it's none of their business.

Check out Marta's t-shirts and hoodies on her blog at www.weggiesunite.blogspot.com (http://www.weggiesunite.blogspot.com) There are some nice Pred Rage items there!

Daggar
03-26-2011, 10:34 AM
A little "exaggeration" there Ginger ... but it's nice to be appreciated!:biggrin1: I think you have to look into the mirror to find the #1 person responsible for you pulling through and doing as well as you have.... doctors a close 2nd....

Brian -- we have to decide on which one (roller coaster ride from hell seems to be the most appropriate).... how's Marta doing?

Sangye
03-26-2011, 02:39 PM
Aww, you're such a great dad, Daggar. What a sweet thing to tell your daughter. :smile1:

delorisdoe
03-26-2011, 10:49 PM
I'm very thankful that i have my father when it comes to thois disease. WIthout him, i wouldnt behere right now.

Other poeple in my family aren't exactly the kind of poeple to deal with these kinds of things. but w/e i have my dad to help me, and thats all i really need
:o
What really hurts is when your peers at school talk down to you, thinking your making the whole thing up, and when you miss a week of school, they roll their eyes, and say " oh great your sick AGAIN?"

Thats when the pred kicks in and i can't help but give THEM the WG nose, hehehe....:predrage:

cuz really, it's none of their business.

Your post really got to me. I cant imagine how hard that would be at that age. I remember well people giving me the "you are faking it look". I find it hard to tell people about wg for a multitude of reasons one being I really dont get it myself so how could I explain it. Over the years I have just learnt to act as if its nothing. I can be pretty sick with it and I do my best to pretend all is well to avoid questions and that look. I have pretty much isolated myself because the only other option is to punch people in the face. I am thinking of all the things id say to peers if i was you. lol. good thing im not.

leigh
p.s. if i am correct it is your dad that does not like my unwillingness to lean on family and friends etc and this is why i am this way. :)

BrianR
03-27-2011, 05:48 AM
A little "exaggeration" there Ginger ... but it's nice to be appreciated!:biggrin1: I think you have to look into the mirror to find the #1 person responsible for you pulling through and doing as well as you have.... doctors a close 2nd....

Brian -- we have to decide on which one (roller coaster ride from hell seems to be the most appropriate).... how's Marta doing?

I like the Roller Coaster one as well. Maybe Marta will design some new stuff on request??? And...her second rtx infusion went well yesterday and she is feeling no real ill effects other than tired. Now we wait, trust and hope it does what it is "supposed" to do.

Sangye
03-27-2011, 06:05 AM
That's great to hear, Brian! Give Marta a big hug from me like this: :hug1:But don't toss her around yet like this: :hug3:

DEE
03-27-2011, 06:37 AM
Thinking of you Marta graet news :hug3::hug2::hug1:take care of you and your lovely family DEEx

BrianR
03-27-2011, 11:08 AM
How does WG affect your family? Well...my 4 year old daughter summed it up today while we were skiing together. I asked her "now what do you want to do", intended to determine whether she wanted to go up the ski lift again for another run or call it a day. She said, and I quote directly as I remember it exactly..."I want to make my mommy's sickness go away".

I am not angry, annoyed, put out in any way or feel any added burden; (I have always LOVED vaccuming and do not understand those of you who think it's a chore!) I just want Marta to get better and will do whatever it takes. Same with my 4 year old. I sure as hell am not celebrating this crappy "thing" that all you wonderful people have to deal with every waking (and "sleeping") moment but it has brought our family even closer.

Here's a photo of Hana taken today at Marmot Basin while she was skiing and obviously thinking about her Mom. The antennae (sp?) are her braids woven up through her goggle straps. She has VERY long hair!

Peace all.

914

Mitch
03-27-2011, 02:00 PM
I'm learning, as a caregiver from you. I'll pass this on to my husband, the patient....Thanks

pberggren1
03-27-2011, 02:45 PM
That's pricelss Brian. I too find cleaning and house work not a chore when I am able to do it. I actually enjoy cleaning.

Sangye
03-28-2011, 01:45 AM
How does WG affect your family? Well...my 4 year old daughter summed it up today while we were skiing together. I asked her "now what do you want to do", intended to determine whether she wanted to go up the ski lift again for another run or call it a day. She said, and I quote directly as I remember it exactly..."I want to make my mommy's sickness go away".

I am not angry, annoyed, put out in any way or feel any added burden; (I have always LOVED vaccuming and do not understand those of you who think it's a chore!) I just want Marta to get better and will do whatever it takes. Same with my 4 year old. I sure as hell am not celebrating this crappy "thing" that all you wonderful people have to deal with every waking (and "sleeping") moment but it has brought our family even closer.

Here's a photo of Hana taken today at Marmot Basin while she was skiing and obviously thinking about her Mom. The antennae (sp?) are her braids woven up through her goggle straps. She has VERY long hair!

Peace all.

914
Gosh Brian, I bet I'm not the only one tearing up reading that. Amazing how kids are always processing things, even when they look like they're involved in another activity. :sad:

What an adorable little munchkin Hanna is. I hope Marta gets stronger really quickly and can get back to having fun with you two.

Daggar
03-28-2011, 01:53 PM
......leigh p.s. if i am correct it is your dad that does not like my unwillingness to lean on family and friends etc and this is why i am this way. :)

Leigh..... not me. What ever works for you -- we're all wired differently. Just don't "pretend not to be sick" to the point that you put yourself in danger...

delorisdoe
03-28-2011, 10:32 PM
i found the post you responded to in my firts post where i commented that i dont share anything wg related with anybody.



Deloris, I'm not much help with knowing what the disease and treatment feels like -- my daughter is the unlucky one -- but your statement about keeping everything to yourself is very scary from a caregiver's perspective! You need to be able to communicate with those around you and let them know what is happening with you..... it makes a huge difference!

All i was trying to explain was that my reluctance to let anyone know of my disease has everything to do with what your daughter experiences at school. I cant filter who i will and will not share with so it just became easier to keep it all to myself. you said you find it scarry and my concern is that your daughter could isolate herself as i did and i thought that you would not like that so much.

I did not mean to sound harsh or offensive. I just read what she wrote and remembered myself ten years ago. Feeling isolated due to something few people understand can lead to what I have become.

oh and no wories...i dont pretend not to be sick to my doctors. well not really anyway.

leigh.:confused1:

Daggar
03-29-2011, 02:18 AM
Now I remember.... it was the "not letting someone know when you were sick" that set off the alarm bells...

No fear of Holly isolating herself -- she's very vocal about how she feels. She's fairly shy around people she doesn't know well so the attention she received when going back to school after such a long absence drove her crazy and still does.

She does have a circle of friends that have been together since Kindergarten and I know they confide in each other.

She doesn't post much -- unlike her D -- but she reads a lot of the threads from this site and that has helped her to understand that she's not alone.

This site and the doctors have helped me be there for her when she needs to ask questions.

Are you from Ontario?

delorisdoe
03-29-2011, 03:36 AM
Yes I am from ontario

Daggar
03-29-2011, 03:48 AM
Born in Renfrew ... spent 4 years up north of Kenora (bush country) for high school... moved to Alberta at 19

Most relatives on my side are in the Ottawa or Toronto area.

Seems like many, many years ago

delorisdoe
03-29-2011, 03:55 AM
I suppose you could say I am from Toronto area

ArlaMo
03-29-2011, 04:16 AM
My husband grew up mostly in Kenora! His dad owned a fly-in fishing resort on Delaney Lake.

Daggar
03-29-2011, 04:28 AM
Wow... we lived further north up toward the town of Red Lake. My dad worked for STELCO fo many years and was transferred from eastern ontario up to the Griffith Mine which closed down back in the 80's.

I have friends who still have fish camps in the area (Lac Seul - English River - etc) and I usually haul my brother-in-law back every year for some serious fishing!! Great therapy!!

Kenora has changed quite a bit over the years.

delorisdoe
03-29-2011, 04:33 AM
Wow... we lived further north up toward the town of Red Lake. My dad worked for STELCO fo many years and was transferred from eastern ontario up to the Griffith Mine which closed down back in the 80's.

I have friends who still have fish camps in the area (Lac Seul - English River - etc) and I usually haul my brother-in-law back every year for some serious fishing!! Great therapy!!

Kenora has changed quite a bit over the years.


my brother in law is from up toward red lake...my dad worked for stelco as well.

Daggar
03-29-2011, 04:36 AM
what's your brother-in-law's last name?

ArlaMo
03-29-2011, 04:38 AM
I've been to Red Lake and I've fished on the English River! Small world!

Daggar
03-29-2011, 04:40 AM
Walleye for lunch!!

pberggren1
03-29-2011, 04:44 AM
That's amazing that you guys have this in common. I think it is so neat.

delorisdoe
03-29-2011, 05:04 AM
That's amazing that you guys have this in common. I think it is so neat.


to be honest it freaks me out a little bit. I dont really share. having said that his last name is Durrand.