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drz
09-04-2012, 02:23 AM
When I was in the hospital for the first time i was surprised and impressed by the number of calls, cards, visits when possible, phone calls and emails offering supportive encouragement to me and my family. Once my survival was more probable the contacts seemed to decrease some. They decreased further when I went to rehab hospital and later a nursing home for more rehab work and even more after I went back home. This sort of puzzled me since the most visits and support seemed to come when i was often too sick to really communicate much. As I got better and more able to actually visit with people I had less opportunities to do so. I could certainly do more things when in a nursing home than when I was in ICU units but the Wegs caused major life changes in social relationships that persist.

The damage from Wegs has hindered or limited my ability to stay involved in most of the groups, and activities I enjoyed before the illness. Loss of hearing, limited energy, limited walking are real physical limitations. Emotional variability and mood swings from pred meds, and busy medical appointment schedule created another social barrier. The increased financial costs from increased medical needs also did major damage to my finances and created another major obstacle to what I could do.

Now I have regained some hearing from BAHA type surgery I might be able to participate more in some social activities but still have the other limitations. Friendships based upon a shared interest seem to wane or disappear when one can't participate in the activity anymore.

Sometimes our family and friends don't seem able to adjust to our new level of functioning and new "normal" very well either. They may be unsupportive or rather critical if they can't understand our illness or accept our limitations. I know divorce and other family disruption can happen in these circumstances which only creates more stress for us.

How many people are lucky enough to have a good face to face group? How many people find internet friends to be their main source or support?

Pete
09-04-2012, 02:45 AM
I think retirement brings about changes in our social networks. We don't see the people we used to work with as often. In early retirement, we find that some of our friends are still working, and thus have less time available for us. I also think that hospitalization heightens concern for well-being. This concern wanes a bit once we are discharged and life returns to our "new normal".

Having said the above, we sometimes need to look at ourselves to see if we're doing our part to nurture relationships. I know this can be difficult if symptoms continue to be debilitating or interfere with communications.

Don't know if this is useful to you or not. I hope you find ways to re-establish old relationships and begin new ones.

annekat
09-04-2012, 02:50 AM
I would have to say that the friends here on the forum definitely provide the most support. Out there in the world, I "don't look sick" and I do get the polite questions about how I'm doing, but that's about it. But then, I don't solicit the support, because I don't look sick, and they wouldn't understand. I ran across a face to face support group that supposedly meets once in awhile for picnics and such, but found them hard to communicate with online, and they are based an hour and a half away from me. I didn't have the time or energy to pursue it. This forum is really the best and most convenient base of support I can imagine.

mishb
09-04-2012, 09:05 AM
I guess because I'm still working it's a lot easier for me.
I have a great group of people that I work with and I am also the Treasurer for a Tenpin Bowling League, so have a great group of people there too....can't bowl anymore though.
I recenty joined a book club and we meet once a month to have dinner and talk about our chosen book for the month.
- just some little things to get me out of the house and off the computer otherwise I would be hassling you lovely people all day, everyday, or playing games on facebook.
- but still, most of these people don't fully understand ....... and it is because we do look so normal.

Yes, this forum is the best :hug3:

annekat
09-04-2012, 10:02 AM
It's true that selling at the Farmers Market 4 days a week provides me with about all the face-to-face social contact I need. But it would be nice to also have time for book clubs, walking groups, or other such activities. I realize the kind of support we need includes not just people trying to understand what we are going through with our illness, but people helping us realize that we can still do a lot of interesting, fun, and meaningful things with other people. And everyone has problems or illnesses in their lives, so we can be there to support them, too.

Sangye
09-05-2012, 03:54 AM
I think the key to feeling involved is engaging in activities that 1) take your mind off of being sick and 2) focus on helping others whenever possible.

Even though it's not meeting face-to-face, being on Twitter helps me spend time interacting with a wide variety of people and thinking about all sorts of topics. It's very mentally-stimulating, because someone will tweet a link to an article and that gets you thinking and discussing it. Then someone else tweets about their new puppy and it's another conversation. For someone like me, who can usually only leave the house 3 or maybe 4 times a week, it's great. I rarely discuss Wegs or being sick on Twitter or FB.

I also spend a lot of time helping others. I do some online things for our temple, like making flyers or organizing groups, etc.... I can adapt it to my energy levels and hit the Pause button for the hours, days, weeks or months when I'm not able to do it. I spend a lot of time in prayer and meditation as well. Also reading, and of course taking care of my animals.

There are so many ways we can help others even if we can't walk or have other physical limitations. Animal rescuers (individuals or organizations) post pictures of dogs and cats that need to be rescued and/or fostered. It's non-stop. You can be a HUGE help to them by sharing the posts, or better yet, helping to find them homes. I've worked in animal rescue and can give people more info about ways to help. Local food banks can also use your help calling grocery stores to ask for unused but safe food. There are so many more things like this!

Before I got Wegs all of my fun revolved around physical activities, like hiking, biking, yoga, etc.... Now that those are off the table, I've found other ways to enjoy myself that I never did before.

annekat
09-05-2012, 05:09 AM
I feel bad for those of us who cannot engage in physical activities, and it reminds me that I can and should more often. I might get out of breath a little faster than before. But that's nothing compared to not being able to do it at all. (However, I do get a fair bit of exercise doing pottery, selling at the Market, and traipsing around after my cats.)

annekat
09-05-2012, 05:18 AM
Sangye said:

There are so many ways we can help others even if we can't walk or have other physical limitations. Animal rescuers (individuals or organizations) post pictures of dogs and cats that need to be rescued and/or fostered. It's non-stop. You can be a HUGE help to them by sharing the posts, or better yet, helping to find them homes. I've worked in animal rescue and can give people more info about ways to help. Local food banks can also use your help calling grocery stores to ask for unused but safe food. There are so many more things like this!

This is great. I think most of us on here like animals. I feed some feral cats who have been trapped, neutered and returned to their outdoor home, since they are too wild to be adopted. The organization that did the TNR also finds homes for adoptable cats and coordinates foster care for kittens. I think fostering kittens and puppies would be a great thing for largely housebound Weggies without requiring the responsibility of giving them a permanent home. These animal welfare organizations can use all the help they can get.

Procuring food for food banks and otherwise coordinating help for down and out people is also a great idea.

KathyB
09-05-2012, 07:12 AM
I have "liked" so much of what you've written. If I could, drz, I'd give you a big HUG! Somehow you say things I'm thinking. My heart breaks thinking about folks who feel alone. I KNOW how it feels and work hard at trying to connect with others throughout out the day -- sometimes it works! Being such a people-person and used to being on the go all the time, I wonder if I'll ever get used to the sense of isolation. Today was the first day back to school and the very first time I haven't been involved in education since I was 6 years old! My husband, too. (He has now retired from being a high school principal.). So we have focused on the excitement of our grandkids getting back to school. I found myself texting all my colleagues this morning wishing them a "Happy New Year!". Lol! I am forever grateful to all of you so I have a place to express my thoughts. Funny, my thoughts are often yours.

KB. :hug3:

Psyborg
09-05-2012, 07:22 AM
I know what you mean drz. I think that on some level the loss of the active concern is probably normal. WHen we first get diagnosed and look like we are dieing I think people get rattled into paying attention. But then as we get "better" people lose some of the interest in following our status. That and there is probably some fatigue over time that just wears out some people who probably weren't your strongest support.

I'm lucky to still be at work so I keep pretty connected with people. But I definitely see that, other than my coworker with Lupus, most of my team mates don't get it at all.

Dirty Don
09-05-2012, 08:04 AM
Today was the first day back to school and the very first time I haven't been involved in education since I was 6 years old! My husband, too. (He has now retired from being a high school principal.). So we have focused on the excitement of our grandkids getting back to school. I found myself texting all my colleagues this morning wishing them a "Happy New Year!"

KB, I've been out of education for, whew, 10 years now. I was healthy then, other circumstances dictated my leaving then, I was lucky to retire fairly early, especially now with the onset of WG. Anyway, I, too, called and emailed friends still in the business the first couple of years, got some responses, some even came and visited here in the desert (nice relief for them from the gloom of Oregon mist!). Even drove back to Oregon, visited the old high school I last worked in for 20 years, saw old friends. But things were changing already...whence I next visited the school, I knew less of the staff...then about 5 years after, I made one more visit...I knew exactly 5 people on staff. Haven't been back since, but I do keep in touch with the closest of those friends although a couple have died already. It's ever changing as you well know, but it's a shock once one realizes that it does/did change and they went on without me!! How dare they! LOL! Anyway, glad you're in that 'happy' mode, good place to be. Hope your appt went well. Don

Dirty Don
09-05-2012, 08:15 AM
I believe what Bob suggests is really what happens, but it's a little deeper than that also. My closest friends, ones who supported me thru last year and still, are still within reach and in contact. I kind of expected that, but thought of some 'disappearing' over time. That includes the same kind of feelings I had when I retired...BUT, there are social and not so social people...those who are social expect, demand, and work at keeping up the activities (I'm lucky, I can still golf, but I'd be playing cards or something if I coudn't do that). Those of 'us' who still work, don't have to work as hard at social and physical activities as those are ever present and, frankly, just as big a pain as not being active cuz they drain one so much. I would imagine and have heard from others on here that they wish they had more down time. I am a social moderate, love people just understand that we are what we are...and I accept that...I do not accept the 'solitude' of this disease or any other...I was the worst patient! Believe me, I wanted out, I wanted to walk, I wanted my friends there...even tho I was incoherent and would fall flat on my face the first step! Ha! I watched my mother literally kill herself by holing up in her abode after Pop died...her heart finally calcified basically...hmmmm, a calcified life I may observe. Not going that way...will strive for 'touch' for as long as I can...it helps people a lot to make their own way that way...what??!?!??! LOL!

pberggren1
09-05-2012, 03:56 PM
Thanks Sangye. That is how I pretty much feel as well. You took the words right out of my mouth.

Lightwarrior
09-06-2012, 11:15 AM
I believe what Bob suggests is really what happens, but it's a little deeper than that also. My closest friends, ones who supported me thru last year and still, are still within reach and in contact. I kind of expected that, but thought of some 'disappearing' over time. That includes the same kind of feelings I had when I retired...BUT, there are social and not so social people...those who are social expect, demand, and work at keeping up the activities (I'm lucky, I can still golf, but I'd be playing cards or something if I coudn't do that). Those of 'us' who still work, don't have to work as hard at social and physical activities as those are ever present and, frankly, just as big a pain as not being active cuz they drain one so much. I would imagine and have heard from others on here that they wish they had more down time. I am a social moderate, love people just understand that we are what we are...and I accept that...I do not accept the 'solitude' of this disease or any other...I was the worst patient! Believe me, I wanted out, I wanted to walk, I wanted my friends there...even tho I was incoherent and would fall flat on my face the first step! Ha! I watched my mother literally kill herself by holing up in her abode after Pop died...her heart finally calcified basically...hmmmm, a calcified life I may observe. Not going that way...will strive for 'touch' for as long as I can...it helps people a lot to make their own way that way...what??!?!??! LOL!

The skin is the largest organ that we have and our first layer of defense. There are actually chemical changes when we are touched that are beneficial. Our skin soaks up the light that we take in and we translate that light into the warmth that we give out to others. So I do agree with you that we are meant to be touched and we will wither and die without it.

Hopeful
09-06-2012, 12:37 PM
The damage from Wegs has hindered or limited my ability to stay involved in most of the groups, and activities I enjoyed before the illness. Loss of hearing, limited energy, limited walking were real physical limitations. Emotional variability and mood swings from pred meds, and busy medical appointment schedule created another social barrier. The increased financial costs from increased medical needs also did major damage to my finances and created another major obstacle to what I could do.

Now I have regain some hearing from BAHA type surgery I might be able to participate more in some social activities but still have the other limitations. Friendships based upon a shared interest seem to wane or disappear when one can't participate in the activity anymore.

How many people are lucky enough to have a good face to face group? How many people find internet friends to be their main source or support?[/QUOTE]


Thank you so much for starting this post. Firstly, because your symptoms seem to mirror mine, which makes this forum such a good support group ("You are not alone"), and secondly because we learn about "work-arounds" and to accept our limitations from each other. The hospital where I receive treatment has a group for patients with chronic disease. This seems to be pitched mostly towards diabetics and those with kidney disease. I've never been into group stuff...I'm a lurker and learner and a facilitator.

I totally agree with what has been said about people tending to neglect us when we are no longer in danger of imminent death. My outward signs are deafness and an occassional hobbling walk when I stiffen up. My boss tends to forget how impaired I am (generally a good thing) but this wreaks havoc when my coworkers are talking about work decisions. However I have 2 workmates who befriended me and continue to support me. I wish everyone could have friends like these!

And drz, thank you for mentioning BAHA. I'm going to have to look into that! :thumbup: See! I'm a lurker and learner!

Oh, and one more thing. My family even goes back and forth with support. I used to be able to give Martha Stewart a run for her money, but now I rarely cook (but I generally don't eat dinner anyway, just a snack) and I do a whole lot less housekeeping. My family does the whole passive-agressive thing occassionally about my not cooking, but they still understand. And my house is definitely not as clean as I would like it, but thank goodness my family aren't neatniks (unless they can't find something! LOL!).

drz
09-06-2012, 11:36 PM
Oh, and one more thing. My family even goes back and forth with support. I used to be able to give Martha Stewart a run for her money, but now I rarely cook (but I generally don't eat dinner anyway, just a snack) and I do a whole lot less housekeeping. My family does the whole passive-agressive thing occassionally about my not cooking, but they still understand. And my house is definitely not as clean as I would like it, but thank goodness my family aren't neatniks (unless they can't find something! LOL!).

I think like Bob said earlier there is a fatigue factor. Family and some close friends can gear up some times for a short intense run but when the crisis seems to pass, and the fatigue sets in, frustration can build. We know or can feel what is going on inside us and often still get very frustrated and impatient about our"recovery" and have difficulty accepting our new "normal" if we lost a lot of our ability to function. It must be even harder for those around us as it slowly dawns on them that we might not get any better and they find it more difficult to accept our new limitations.

Spouses and some friends may then bail out of the relationship since it isn't what they are used to or want anymore. Some might feel guilty about their inability to cope with your losses and also mourn the loss of the relationship with you but still either leave or try to restore it to former status by getting real critical and starting to blame you for not trying harder to get well. They may also think you are playing sick since you look better than you are.

Maybe some of us do a better job of adjusting to our changes than people around us because of the support we get here and the fact we have to deal with our "stuff" 24 hours a day.

Causal friends with whom you shared a common interest or activity will fade away when you don't show up or aren't able to participate in the shared activity anymore. Your golfing, bowling, fishing, hunting, work colleagues, card playing buddies, hiking, bird watching, or whatever activity you enjoyed together, or any of your social groups may miss you when you can't be there anymore but aren't likely to come seek you out unless they are also a close friend. If you can recover enough to resume attendance and participation in your mutual activity they may welcome your return, but have trouble understanding the "new you" or accepting your new limitations. Some of us have many new limitations such as loss of some physical abilities, loss in hearing or vision, trouble walking, poor coordination, lack of energy, low endurance, emotional variability, trouble concentrating, forgetfulness, depression, anxiety and others. Some of these might be due to damage from Wegs dog and some are side effects of lovely meds we have to take to survive like our new best friend Prednisone or others.

This can really be a tough road when you return to work and find yourself struggling to do what used to be easy for you to do. I admire and empathize with those of you dealing with such work stress. Our increased need for medical attention and follow up can create another big source of stress and conflict at work when medical appointments cause absence from work.

Hearing loss is one of the biggest obstacles to having good social interaction. Blind people often get much sympathy while hearing impaired people are often ridiculed and made fun of in jokes. Improving my hearing was a great morale booster for me. I bet Phil also agrees.

I have found all your comments very helpful. Thanks for sharing.

09-21-2012, 02:21 AM
Hey drz! How are you doing?
I tried to respond to your latest personal message, but your INBOX is full!!!! :sad:
Please do something about it!!! :wink1::biggrin1:

drz
09-21-2012, 10:54 AM
Hey drz! How are you doing?
I tried to respond to your latest personal message, but your INBOX is full!!!! :sad:
Please do something about it!!! :wink1::biggrin1:

Working on it and sending out more. Thanks for heads up!

LisaT
05-16-2014, 12:04 AM
Illness like this can be very isolating. I don't have the energy to go out in the evening most of the time, but don't want to get into details with many people to explain why, so they likely think I'm antisocial. I find many former friends and acquaintances have dropped away and I'm left with the handful of real relationships with truly dependable friends and family. That's all I have time and energy for, but it still makes me sad how people forget about you when you don't meet their needs or aren't as much fun as you used to be.

I'm experiencing a painful lack of support in my own household at the moment and I'm not sure how to handle it. A loved one seems to feel the need to question and challenge everything I'm doing and learning to deal with this disease and get the best care possible. I find myself having to explain and justify my concern, my time on this forum, my need for the support group and a second opinion. I'm faced with, "why don't you just wait until you know if you even have it?"; "how do you know your doctor isn't the best doctor? (I don't but I need to find out, and sooner than later). How do you know these people know who the best doctors are?" (Um, the one I'm corresponding with has had it for eight years and is in remission and alive. And is head of the support group, which exists to provide this information!) etc., etc. Since this person is a very concrete black and white thinker, I spelled it out: I do NOT need a devil's advocate right now. What I need is support. It didn't sink in so I ended the conversation. Now what to do with my anger so it doesn't inflame my cells... :predrage: Any suggestions for dealing with this kind of behaviour short of changing mine and my children's entire life situation?!?!? I know he's in denial and trying to assume the best but he takes it to such a level that I feel like he thinks I've made it all up or am exaggerating my illness and/or the need for timely, specialized care. Sorry, I totally hijacked this... It seemed to fit generally under lack of support and I didn't realize how long a rant it would be until I got going. Thanks for listening!

annekat
05-16-2014, 12:24 AM
I hear you, Lisa. I live alone and don't have to deal with that on a daily basis. But some family members, mainly siblings, can easily go into a state of denial that there is anything that unusual or serious about what I have, since I seem OK around them a lot of the time. I think they are getting it now, though, about me not being able to go out and do things a lot, how easily my energy gets sapped, and how much I need to rest. It may be slowly sinking in about how stress makes me worse. It WOULD be nice to have a domestic partner who was totally supportive, as opposed to dealing with this alone.... I guess I'd just say try not to resent him too much for something he doesn't understand, and the understanding may come, little by little. I guess that will mean just tuning out some of the stuff, too. Best to you, and I hope you get a dx soon, if you indeed have WG, or get to the bottom of what else may be going on. I know this advice won't be easy to follow......

Alysia
05-16-2014, 12:37 AM
Lisa, I know what you are going through.... too well :sad:
what can I say ? I don't know....
just sending some hugs :hug1::hug1:

jvilner
05-16-2014, 01:15 AM
Hi Lisa! Understand you totally. In a similar situation. This group helps me to find my inner strength to deal with it all. Good luck!

windchime
05-16-2014, 04:18 AM
Lisa sorry you are going through this added stress in your life. I'm not sure there is a good way to "handle it." Don't stop what you are doing though, because you are doing it for you and that's what counts right now. Remember you can't live your life FOR someone else only for yourself or you won't be happy. Hugs to you. :hug1:

Dirty Don
05-16-2014, 06:25 AM
I think I married him in my first go around...did I just say that??? OMG! Gotta laugh my friends, and it needs to be directed at ourselves...others don't always get it (I'm lucky, my wife is sooooo understanding...then again she experienced hell as I was out for 10 days and no one knew if I'd make it). Know your self, you will know where you're going then and who can help you best. What? Tired, just got off golf course...please tho, take care of YOU!

LisaT
05-16-2014, 11:30 AM
Thank you for your responses. The reality keeps changing and every time it does there's a whole new set of adjustments to make... I don't want to feel like it's a fight every step of the way. Who has the extra energy and time to drag someone along kicking and screaming?!? Anyway, I will keep doing what I need to do and he can get on board or not when he so chooses. He usually comes around, just not on my timing... I really appreciate all the support I'm receiving here. And I had lunch with my good friend, who happens to be legally blind, and when I told her what was going on, she said, don't worry,,, you have me... And my BLIND support. :lol: She's always able to make me laugh. Back to the beginning of the thread, that's my advice for everyone; spend time with the people who make you laugh.

windchime
05-16-2014, 12:33 PM
Take some time to chat with Lilly. She had some of the same problems. Maybe you can send her a PM or if she sees this she can send you one. She's probably the best person to give you advice on this subject, at least that I know of. Your story is somewhat parallel to hers with regard to her/your significant other. Just a thought.

LisaT
05-17-2014, 03:34 AM
Take some time to chat with Lilly. She had some of the same problems. Maybe you can send her a PM or if she sees this she can send you one. She's probably the best person to give you advice on this subject, at least that I know of. Your story is somewhat parallel to hers with regard to her/your significant other. Just a thought.
Great suggestion, I saw some similarities in one of her posts. Unfortunately, it seems many in the forum can relate. Relationships aren't always easy at the best of times, and stressors like illness really put them to the test. (Or the other way around... Eg. Could not speaking up or speaking out, or not feeling heard or understood on a Chronic basis make one have chronic voice/throat issues? But that's another whole thread.) must tear myself away and participate in my children's lives til later on.

windchime
05-17-2014, 03:37 AM
Eg. Could not speaking up or speaking out, or not feeling heard or understood on a Chronic basis make one have chronic voice/throat issues? But that's another whole thread.) must tear myself away and participate in my children's lives til later on.

Yes, your throat chakra could definitely be blocked/closed and causing problems.

pberggren1
05-17-2014, 07:56 AM
Cindy, what is chakra?

windchime
05-17-2014, 09:42 AM
Cindy, what is chakra?

A chakra is an energy center. We have 7 major ones. Root, Sacral, Solar Plexus, Heart, Throat, Third Eye, and Crown.

Here is a link if you'd like more information. I don't want to hijack the thread and I don't know if this crosses the religion line although it's not a religion. Just trying to stay out of trouble. :w00t:

The 7 Chakras for Beginners (http://www.mindbodygreen.com/0-91/The-7-Chakras-for-Beginners.html)

pberggren1
05-17-2014, 10:48 AM
Oh.....lol I thought it was anatomical....he he

drz
05-17-2014, 12:49 PM
It was interesting to read again this thread I started almost two years ago. I have some follow up thoughts after reading this again and my experiences over the past two years.

It is nice to have a life partner or close friends who are understanding and supportive and those who do are very lucky. I think it important to recognize that major changes in health or other life circumstances are stressful and that people also change in response to such major changes in their life circumstances. Some relationships get stronger when then people involved recognize what is most important in their life and their relationships.

Some people cannot accept or adapt to these big changes so many relationships don't survive the stress of these changes and they fall apart and end. My marriage of several decades didn't survive. But I think it is better to live alone than try enduring being stressed out all the time by a negative, critical, non supportive relationship. If your life partner can't be supportive and bails out on you, it can turn out to be a blessing even though it may just feel like another major loss at the time. It might be harder to be the one to leave, but some times such tough choices might be the best option to try maintain ones health. In such cases a professional counselor should be probably be consulted to help make such a decision to be sure it the best one for you.

I believe support groups of various kinds are also a great source of emotional support if you can find a good one close by to attend. In our area we have groups to help people cope with various chronic illnesses, diseases like cancer, epilepsy, strokes, cardiac disease, MS, etc, classes to help adjusting to living alone again after a relationship ends through death or divorce or separation, and there are many other specialized groups available on the internet. I think this forum qualifies as a good one. One does need to be careful though in joining online groups as not everyone in them is healthy or helpful.

Professional counseling or personal therapy is usually also a pretty good and safe choice if it is an option. But again there are good doctors and some doctors who are not as competent or skillful or helpful. Here we have to trust our instincts to help evaluate if we are getting good care and help.

Thanks to everyone for their input and contributions to this thread.

windchime
05-17-2014, 01:25 PM
Such great wisdom, thanks for sharing this very serious truth.

Alysia
05-17-2014, 06:07 PM
Thanks a lot, drz. your wisdom is very helpful :thumbsup:

LisaT
05-17-2014, 11:29 PM
Yes, thank you, drz. I'm curious, two years later how are you feeling about your support network and social life? (I always refer to mine as my social life or lack thereof)...

LisaT
05-17-2014, 11:52 PM
A chakra is an energy center. We have 7 major ones. Root, Sacral, Solar Plexus, Heart, Throat, Third Eye, and Crown.

Here is a link if you'd like more information. I don't want to hijack the thread and I don't know if this crosses the religion line although it's not a religion. Just trying to stay out of trouble. :w00t:

The 7 Chakras for Beginners (http://www.mindbodygreen.com/0-91/The-7-Chakras-for-Beginners.html)

Apparently to heal the throat chakra, one should practice shoulder stands... Ha! My body won't be doing that any time soon. Once in a while, in complete denial, I do something I used to be able to do (like demonstrate a cartwheel or handstand for my kids).., and then I PAY.

thank you for the summary of the chakras. I've been meaning to read more about the throat chakra for some time. Now I will. There's a place on one of the islands off the BC coast that has chakra healing retreats that sound amazing... You can do a combination of different chakras or focus on one. I'm hoping to get there someday and do one or more of the workshops.

LisaT
05-18-2014, 03:21 AM
By way of follow-up to my post of a couple of days ago... Hubby is now back to his normal cheerful self, bringing me lemon water while I sit in my happy place (the tub) and telling me to relax and take my time as he has the kids and everything under control. I love Saturday mornings! I can generally take care of myself and get moving slowly rather than take care of everyone else for two or three hours, get the kids to school, then assess the damage, see what if any energy I have remaining, and what can be done... I'm sure he is still in denial and assuming I don't have WG or if I do it's no biggie and everything will be fine, but at least he's more pleasant. The understanding and acceptance will come later. I know the pattern all too well. Thanks for all of the support and advice you've all given me!

drz
05-19-2014, 04:44 AM
Yes, thank you, drz. I'm curious, two years later how are you feeling about your support network and social life? (I always refer to mine as my social life or lack thereof)...

Generally OK. I am busy with lots of activity when my many medical appointments permit. There are many things I wish I could still do but no longer have the necessary energy and endurance and physical ability to do. I have found some substitute activities like more passive and audience or observation type things like playing cards, reading and book clubs, discussion groups, spectator sports and watching performing arts or doing low energy activities like geocaching. I tried disc golf yesterday but could only go four holes.

I have recovered as much as likely from my Weg damage and decades of diabetes that caused kidney damage, lung damage, neuropathy, loss of hearing and balance, and of course the pervasive lack of energy and resultant need for lots of naps and rest. But I am very happy I am no longer in a nursing home or hospital and am mostly independent in a light assisted living senior living complex.

I rely on the staff here or using other paid help when necessary for help and support in case of serious health emergency. I have a sibling that helped a great deal when i had a couple operations. I count on my daughter to direct my health care and advise me on any important decisions as she did a tremendous job directing my health care four years ago when I was really ill and spent half that year in hospitals and nursing homes.

I would like more close friends and emotional support, but as long as I remain in a drug induced remission I can get by fine now. I would also like to have a life partner who is also a close and trusted friend but being recently divorced after a long and stressful divorce, I am wary and reluctant to even consider making another commitment to another life partner at this stage in my life even if i found a great candidate which also seems unlikely to me.

The divorce took two years to complete after my wife of over four decades demanded i move out and then she dragged it out and made it as difficult and expensive as possible. I am very happy it is finally over but it will be very difficult for me to develop enough trust in some one again to risk going through such a procedure again even if it became possible. I also doubt there are many people are willing to get seriously involved with some one like myself who has many health care issues. Being a caretaker in a relationship is difficult and demanding and I don't wish to do that again either if I can avoid it.

So in summary I feel things are adequate to good but like most things they could also be better.

vdub
05-19-2014, 05:11 AM
I, purposely, don't have a lot of friends and I'm not in any "clubs". My closest friend is my wife. We do almost everything together and have a lot of fun doing it. However, she is more social than I am and she does go to book clubs and that sort of stuff.

I don't have a lot of friends or belong to clubs because they can be a drain on your life and they create future commitments that I might not be able to keep or might not want to keep. I have 2 very close friends locally and 3 or 4 close friends at a distance (1,000 miles or more). These are the type of friends I can confide in and the ones that understand when I say I'm not up to doing such-and-such. We talk on the phone often.

My social network is this forum and several lists of e-mail friends. But my best friend is my wife.

pberggren1
05-19-2014, 09:12 AM
I am glad to hear that vdub. I think spouses should be each others best friend.

I belong to some groups and clubs too but have never felt pressured to go regularly. I just show up when I want to.

drz
09-09-2014, 01:03 AM
I, purposely, don't have a lot of friends and I'm not in any "clubs". My closest friend is my wife. We do almost everything together and have a lot of fun doing it. However, she is more social than I am and she does go to book clubs and that sort of stuff.

I don't have a lot of friends or belong to clubs because they can be a drain on your life and they create future commitments that I might not be able to keep or might not want to keep. I have 2 very close friends locally and 3 or 4 close friends at a distance (1,000 miles or more). These are the type of friends I can confide in and the ones that understand when I say I'm not up to doing such-and-such. We talk on the phone often.

My social network is this forum and several lists of e-mail friends. But my best friend is my wife.

This has some good advice which I appreciate since i have to remember to not try over do things. Over scheduling myself can create problems and use up my "spoons."

Are you more socially active recently when you are feeling better? Have you met or made any new friends since this post?

nympha7
03-08-2015, 04:00 AM
Anyone close to South Tx??

sbeach78
03-13-2015, 04:55 AM
I noticed the same thing. when I was so ill I couldn't so much as set up I had all kinds of people show up to visit now I just set hear unable to find work and alone. Sometimes I wonder if its me though, between the PRED. and everything else maybe I just chased them off.

drz
03-13-2015, 07:17 AM
It is interesting to me how people find these old threads that have been inactive for months or even years and read them and identify with the content and then reactivate the thread by posting a comment. It was interesting for me to read this again over two years later since I started this thread. My situation is about the same as my last post in May of 2014. I like to go to various activities and entertainment that are low energy events and I am always on the look out for another new friend or even a new best friend or female companion. I try to keep in touch with the old friends and visit a lot with other people in my apartment building and try to partake in many of our building social activities. I often organize or plan events for some of my friends here, as I am the youngest one in our senior housing complex. I try to plan things that can fit in between my many medical trips and appointments like an outing some where to enjoy some Irish food for St. Pat's Day.

I guess my doctors and nurses are also an important part of of my social support system since I rely on them for assessment and advice on managing my chronic illnesses. One advantage of being a frequent visitor at various medical facilities is the staff recognize you and greet you like an old friend and it speeds up the registration process. Two doctors have also given me direct numbers to reach their nurses in case I need to contact them for an emergency which is a nice perk too.

drz
03-13-2015, 07:23 AM
I noticed the same thing. when I was so ill I couldn't so much as set up I had all kinds of people show up to visit now I just set hear unable to find work and alone. Sometimes I wonder if its me though, between the PRED. and everything else maybe I just chased them off.

I think pred causes mood change that can be confusing to the people around us. Another issue I went through briefly was the depression that followed from the losses causes by my Wegs. This lead to a period of being isolated and withdrawn too. Not being able to hear for a couple years until I got my BAHA also made any group social activity difficult or impossible too. Some people can understand and accept such limitations and those are the ones worth keeping in one's life.

Debbie C
03-13-2015, 12:26 PM
drz,its sounds like you have come a long way since you first posted that thread. You seem to socialize quite a bit within your community.I think having your hearing back has made a world of difference for you.
I think pred ( and all this other meds ) changes us all in someway. I can't believe the guy I am seeing has stayed with me for 14 yrs. I know I wouldn't stay with me with all the [email protected]#& I give him and my the tone in my voice has changed to where people think I have an attitide about things sometimes.

I don't know,we are not the same people we used too be and that is sad. But on the bright side things could be worse.

BookNut
03-13-2015, 02:43 PM
As Pete says, even just retiring brings social changes. I wonder if you could do something that keeps me socially active with friends. We are all retired, but I think it could be arranged to work with a mix of retired and working friends. Here is what we do. Some folks who retired about 8years ago, set up a regular lunch for all retirees from our school district. It is very simple. you choose a regular day and time , such as the first Tuesday of the month at 12 noon. It could be set up for dinner time as well. You find a restaurant that is willing to set up a reservation for an ever changing number of people. The restaurant we meet in sets up tables and chairs for about 16 folks. Sometimes there are 6 of us.....sometimes there are 14 or more. No one is in charge. We just show up, and whoever is there has a great time. It might be a little tricky at dinner time...but as long as it is a large restaurant, and it is on a typically slow week night, it should work for most people. Worth a try. We love it.

annekat
03-13-2015, 03:29 PM
All this talk of isolation, loss of friendships, and changed tones of voice hits home with me, too. Although I do see enough people in the course of what I do to not be too isolated. But I must say that this forum has been a blessing in sending me lots of new friends who understand the issues of having WG. Deb, your boyfriend is obviously very devoted to you, to stick around for so long! You are lucky in that respect, and I'm happy for you. He must be a pretty patient guy who doesn't want to lose you. :smile1:

Debbie C
03-14-2015, 01:53 AM
All this talk of isolation, loss of friendships, and changed tones of voice hits home with me, too. Although I do see enough people in the course of what I do to not be too isolated. But I must say that this forum has been a blessing in sending me lots of new friends who understand the issues of having WG. Deb, your boyfriend is obviously very devoted to you, to stick around for so long! You are lucky in that respect, and I'm happy for you. He must be a pretty patient guy who doesn't want to lose you. :smile1:

Well Anne,you certainly have alot of friends on here and you know even though you live alone ,you are never alone with us !! I wished we lived closer so we could hang out and I could buy some of your pottery !
As for Jack ( my boyfriend ) I think hes just nuts !!

annekat
03-14-2015, 02:07 AM
Well Anne,you certainly have alot of friends on here and you know even though you live alone ,you are never alone with us !! I wished we lived closer so we could hang out and I could buy some of your pottery !
As for Jack ( my boyfriend ) I think hes just nuts !! That would be great, Deb. I need to get my life in order so someone could even stay with me if they were in the area. And I need to get my pottery online so forum members can even look at it. Would love to send someone a coffee mug or two but am not even well organized enough for that right now! And I doubt if Jack is nuts, just knows a good thing when he sees it!

Alysia
03-14-2015, 02:41 AM
All this talk of isolation, loss of friendships, and changed tones of voice hits home with me, too. Although I do see enough people in the course of what I do to not be too isolated. But I must say that this forum has been a blessing in sending me lots of new friends who understand the issues of having WG.
we are blessed to have you with us Anne. you are such a caring, generous, loving and giving friend. I love you.

annekat
03-14-2015, 02:51 AM
we are blessed to have you with us Anne. you are such a caring, generous, loving and giving friend. I love you. Thank you, Alysia. You have all the same qualities you list, and I love you, too!

MAGNOLIA
03-16-2015, 01:46 PM
To Annekt:
I am going through a bad time. Your words are so supportive. I will let you all know what happens after doctor visit tomorrow.I went to church and prayed, for me and for all of you.
Good luck and keep your chins up,
Magnolia

annekat
03-16-2015, 02:05 PM
To Annekt:
I am going through a bad time. Your words are so supportive. I will let you all know what happens after doctor visit tomorrow.I went to church and prayed, for me and for all of you.
Good luck and keep your chins up,
Magnolia I'll be thinking of you, Magnolia. I see you are in Florida and I know there are several others of us in various parts of that state. You might check our Weggie Forum Members Map linked in blue at top of page and see if you can locate anyone near you, and add your name if you choose. I'm pretty sure there are some good WG doctors there, too, hopefully some close to your area. I know that the diagnosis of WG is scary, but don't worry too much, just get plenty of rest and get through the first part of your treatment, and you will find things getting better as you gain more control over the disease. After 4 years, it is just a part of my life, I can live with it, I can still do most of the same things I always could, and can still make my life a good one. Let us know what the doctor says.

MAGNOLIA
03-20-2015, 12:29 AM
Hi Annekt: Sinxw you have been so supportive, i want to thank you. I went to my Rheumy at University of Miami and to Nephrologist.We agreed to start the dialysis today,Please pray for me.
My best thoughts are with you.
I was also prescribes 10 mg of presdnisone.....We shall see.
Magnolia

annekat
03-20-2015, 03:04 AM
Hi Annekt: Sinxw you have been so supportive, i want to thank you. I went to my Rheumy at University of Miami and to Nephrologist.We agreed to start the dialysis today,Please pray for me.
My best thoughts are with you.
I was also prescribes 10 mg of presdnisone.....We shall see.
MagnoliaI'm glad to be supportive, Magnolia. My thoughts and prayers are with you. Just getting over the jitters of having it done the first time will no doubt be the worst of it, and then you'll feel okay about it.

If you are only on 10mg. prednisone for your Wegs, that doesn't sound right. But I think this has been talked about before, and maybe there's more to it that I'm not remembering. Report back to us on how things go and we can talk more about that if necessary. Your rheumy at U of Miami should know what he is doing, but we would like to make sure! Even my pulmonologist with little WG experience was able to find out the right meds, in the right amounts, to treat me with when I was first sick. Maybe I'm not remembering all of your history with WG. In any case, good luck!

Debbie C
03-20-2015, 11:26 AM
Hope all went well with your treatment today ,Magnolia. I said a prayer for you last night that things would go good and you wouldn't have to go through with the dialysis but hopfully this will get your kidneys back in track sooner. Keep us posted.

annekat
03-20-2015, 03:01 PM
Hope all went well with your treatment today ,Magnolia. I said a prayer for you last night that things would go good and you wouldn't have to go through with the dialysis but hopfully this will get your kidneys back in track sooner. Keep us posted.
Yes, we would like to hear how it went and how you feel. I hope it went much better than you were expecting, you'll feel more comfortable the next time, and that the problems in your kidneys will be easily reversed.