Comments on: Honesty and Living with Chronic Illness http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/ Just another WordPress weblog Tue, 10 Apr 2012 18:13:18 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Christine http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-997 Christine Thu, 16 Apr 2009 00:24:20 +0000 http://chronicchicktalk.com/?p=753#comment-997 I have severe psoriasis, and that gets attention where ever I go. I do prefer people to ask me about it or comment than to just to stare at me. People often think I am burn patient. My hands are very bad, and I feel so awkward at the grocery store picking through the produce, and can barely do it if someone is staring at me. I can only imagine what they think I have, and wonder if it is contagious, and maybe do not want to handle the produce after I have been picking through it. What I have found though is that there are many people suffering chronic pain, even if they are not wearing it on their skin. I have also met many people with psoriasis or loved ones with it who want to talk about it. This has given me motivation to start some kind of outreach, so many people suffer alone! I have had this for 15 years now, and I am still working on acceptance. I still believe I can overcome this or at least manage it better. I have had some success by taking control of my treatment and learning all I can. I know there is no cure, but I have found there are many little things I can do to relieve myself somewhat. Combining these things sent me into remission, my longest remission since having this disease (almost 2 years) - which ended a few months ago and has now rapidly gotten unbearable. So now I am relearning all of these things and trying to incorporate them into my life. Funny thing is, it is coming back to me slowly. I get so busy living life and making up for lost time that those things fade from the forefront of my mind. Am I being honest with myself that I can relieve my symptoms greatly and possibly return to normal function? I think so, but time will tell. You should be honest with yourself, but it can be hard to know what the truth is for your situation. I have severe psoriasis, and that gets attention where ever I go. I do prefer people to ask me about it or comment than to just to stare at me. People often think I am burn patient. My hands are very bad, and I feel so awkward at the grocery store picking through the produce, and can barely do it if someone is staring at me. I can only imagine what they think I have, and wonder if it is contagious, and maybe do not want to handle the produce after I have been picking through it.

What I have found though is that there are many people suffering chronic pain, even if they are not wearing it on their skin. I have also met many people with psoriasis or loved ones with it who want to talk about it. This has given me motivation to start some kind of outreach, so many people suffer alone!

I have had this for 15 years now, and I am still working on acceptance. I still believe I can overcome this or at least manage it better. I have had some success by taking control of my treatment and learning all I can. I know there is no cure, but I have found there are many little things I can do to relieve myself somewhat. Combining these things sent me into remission, my longest remission since having this disease (almost 2 years) – which ended a few months ago and has now rapidly gotten unbearable. So now I am relearning all of these things and trying to incorporate them into my life. Funny thing is, it is coming back to me slowly. I get so busy living life and making up for lost time that those things fade from the forefront of my mind. Am I being honest with myself that I can relieve my symptoms greatly and possibly return to normal function? I think so, but time will tell. You should be honest with yourself, but it can be hard to know what the truth is for your situation.

]]> By: chronicchick http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-996 chronicchick Wed, 15 Apr 2009 02:05:59 +0000 http://chronicchicktalk.com/?p=753#comment-996 Danielle, Thanks for stopping by. I can empathize with you. I've had times I get up okay and then I can not walk 5 minutes later. I've resorted to using my wheelchair in stores because I don't want to be embarrassed. Chronic Chick Danielle,
Thanks for stopping by. I can empathize with you. I’ve had times I get up okay and then I can not walk 5 minutes later. I’ve resorted to using my wheelchair in stores because I don’t want to be embarrassed.
Chronic Chick

]]> By: Danielle http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-995 Danielle Wed, 08 Apr 2009 05:58:41 +0000 http://chronicchicktalk.com/?p=753#comment-995 I have a condition called Ehlers-Danlos Syndrome and I have type III. I deal with joint subluxes, dislocations, and a great deal of chronic pain. I also use a wheelchair on days that I do not get around well. I look normal (other than braces I may be wearing or the wheelchair) so when I park in handicapped parking and walk into the store (on good days) I get all sorts of stares. I would prefer people just ask me rather than stare and whisper. It makes me feel as if I am doing something wrong. I also would like people to ask me what is wrong rather than staring or looking away. I have gotten used to it for the most part, but it does bother me at times. As far as getting used to my illness and accepting it, I don't believe I have yet. I was born with this, but was told that nothing was wrong with me all my life. It took me not healing from a hysterectomy and having weird complications that could not be explained for them to say something was wrong and to go to Mayo and that is where I first heard of this illness. I was diagnosed in Madison, WI by a doctor that knows a great deal about this disorder. It has been 8 years since I was diagnosed and I concentrate on all the other problems in my life (believe me there are plenty) so that I do not have to concentrate on how much my life and how much I have changed. If there is a quiet moment my brain goes there and I immediately find something to do. I know how you feel about trying to find that exact mixture on how to do as much as you can when you feel "normal" and then hopefully not paying for it later. I always pay for everything I do when I have good days. I also have gotten to the point I am much more complacent than I need to be out of fear of having the pain quickly escalate to a 10 and then being in bed for days trying to recover. It seems that I will be at about a 3 pain wise and then out of no where it shoots up to a 10 in a matter of 2 minutes. I hate it because it can happen in the middle of a store and then I have to sit down wherever I am (even on the floor) and wait for my kids or my husband to go get one of the stores wheelchairs. The worst is when we go somewhere that doesn't have a wheelchair and my husband has to carry me out. I am always humiliated when this happens. Your posts have helped me explain things to my husband that I have not been able to get through to him. I am not sure if it is that I am not saying it right or if it is just that it is coming from someone else. Either way I want to thank you. I have a condition called Ehlers-Danlos Syndrome and I have type III. I deal with joint subluxes, dislocations, and a great deal of chronic pain. I also use a wheelchair on days that I do not get around well. I look normal (other than braces I may be wearing or the wheelchair) so when I park in handicapped parking and walk into the store (on good days) I get all sorts of stares. I would prefer people just ask me rather than stare and whisper. It makes me feel as if I am doing something wrong. I also would like people to ask me what is wrong rather than staring or looking away. I have gotten used to it for the most part, but it does bother me at times.
As far as getting used to my illness and accepting it, I don’t believe I have yet. I was born with this, but was told that nothing was wrong with me all my life. It took me not healing from a hysterectomy and having weird complications that could not be explained for them to say something was wrong and to go to Mayo and that is where I first heard of this illness. I was diagnosed in Madison, WI by a doctor that knows a great deal about this disorder. It has been 8 years since I was diagnosed and I concentrate on all the other problems in my life (believe me there are plenty) so that I do not have to concentrate on how much my life and how much I have changed. If there is a quiet moment my brain goes there and I immediately find something to do.
I know how you feel about trying to find that exact mixture on how to do as much as you can when you feel “normal” and then hopefully not paying for it later. I always pay for everything I do when I have good days. I also have gotten to the point I am much more complacent than I need to be out of fear of having the pain quickly escalate to a 10 and then being in bed for days trying to recover. It seems that I will be at about a 3 pain wise and then out of no where it shoots up to a 10 in a matter of 2 minutes. I hate it because it can happen in the middle of a store and then I have to sit down wherever I am (even on the floor) and wait for my kids or my husband to go get one of the stores wheelchairs. The worst is when we go somewhere that doesn’t have a wheelchair and my husband has to carry me out. I am always humiliated when this happens.
Your posts have helped me explain things to my husband that I have not been able to get through to him. I am not sure if it is that I am not saying it right or if it is just that it is coming from someone else. Either way I want to thank you.

]]> By: chronicchick http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-994 chronicchick Mon, 23 Feb 2009 05:31:27 +0000 http://chronicchicktalk.com/?p=753#comment-994 Soodi, Very interesting. I too get a lot of Oh, I'm sorry. Most have no clue including my own Mom and Brother. Chronic Chick Soodi,

Very interesting. I too get a lot of Oh, I’m sorry. Most have no clue including my own Mom and Brother.

Chronic Chick

]]> By: Soodi 18 http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-993 Soodi 18 Sun, 22 Feb 2009 03:04:31 +0000 http://chronicchicktalk.com/?p=753#comment-993 I have had Lupus for about 10 years now. I do not need a cane, but I have horrible leg pain at times. I don't mind if any one asks me, but people just seem to say 'oh, I am sorry', or they think its nothing really serious. I recently was diagonsed with secondary Sjogrens Syndrome. I want to share that I have a great Endocrinologist, and he has seen that his patients with autoimmune diseases benefit greatly from having hormones balanced. I know I would get real sick right before my period. That has decreased now that I am using bio-identical hormones. Please try this if you can. I pray that all of us will get help for this suffering. I have had Lupus for about 10 years now. I do not need a cane, but I have horrible leg pain at times.
I don’t mind if any one asks me, but people just seem to say ‘oh, I am sorry’, or they think its nothing really serious.
I recently was diagonsed with secondary Sjogrens Syndrome.
I want to share that I have a great Endocrinologist, and he has seen that his patients with autoimmune diseases benefit greatly from having hormones balanced.
I know I would get real sick right before my period.
That has decreased now that I am using bio-identical hormones.
Please try this if you can. I pray that all of us will get help for this suffering.

]]> By: chronicchick http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-992 chronicchick Wed, 14 Jan 2009 23:51:01 +0000 http://chronicchicktalk.com/?p=753#comment-992 Hi Shasita, Thanks for your visit. Ya, we sure do live with not knowing when our mortality will be which we do live with the reminder 24 hours a day and 7 days a week. Its something you can't get over. The fear is unreal.... I don't wish it on the worse person on earth.... Thanks for stopping by chronic chick Hi Shasita,

Thanks for your visit. Ya, we sure do live with not knowing when our mortality will be which we do live with the reminder 24 hours a day and 7 days a week. Its something you can’t get over. The fear is unreal…. I don’t wish it on the worse person on earth…. Thanks for stopping by

chronic chick

]]> By: Shaista Tayabali http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-991 Shaista Tayabali Wed, 14 Jan 2009 22:10:07 +0000 http://chronicchicktalk.com/?p=753#comment-991 Dear Chick, Thankyou for your comment on my blog. I have been thinking of you ever since - and wondering how to reply to your question, "How do you 'treat' your lupus?" The short and simplest answer is "With Kindness". It has taken me 12 years to come up with that one :) The second answer is "With Mindfulness". This one requires a kind of discipline, and practice. Have you ever heard of a Vietnamese monk called Thich Nhat Hanh? He has written many books and is a poet too. It is difficult to breathe in and be fully present in the moment when the moment is ghastly and you're praying for it to pass. But since we are here and alive and lupus is part of that being alive, breathing in and accepting it is the first step to vanquishing fear of it. Fear of Lupus is our greatest obstacle wouldn't you agree? The eyepatch, the wheelchair, the kidney/liver function tests, falling hair, excrutiating nerve pain - every inch of us is a forcible reminder of our mortality in a way others can blissfully ignore. Unless they are beautiful beings who love us unconditionally! I hope you have some of those in your life. Come visit again soon. Shaista Dear Chick,
Thankyou for your comment on my blog. I have been thinking of you ever since – and wondering how to reply to your question, “How do you ‘treat’ your lupus?” The short and simplest answer is “With Kindness”. It has taken me 12 years to come up with that one :)
The second answer is “With Mindfulness”. This one requires a kind of discipline, and practice. Have you ever heard of a Vietnamese monk called Thich Nhat Hanh? He has written many books and is a poet too. It is difficult to breathe in and be fully present in the moment when the moment is ghastly and you’re praying for it to pass. But since we are here and alive and lupus is part of that being alive, breathing in and accepting it is the first step to vanquishing fear of it.
Fear of Lupus is our greatest obstacle wouldn’t you agree? The eyepatch, the wheelchair, the kidney/liver function tests, falling hair, excrutiating nerve pain – every inch of us is a forcible reminder of our mortality in a way others can blissfully ignore. Unless they are beautiful beings who love us unconditionally!
I hope you have some of those in your life. Come visit again soon.
Shaista

]]> By: yeokeehui http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-990 yeokeehui Sat, 10 Jan 2009 22:20:14 +0000 http://chronicchicktalk.com/?p=753#comment-990 I think as we face the reality of life, then we get honest with ourselves and others. What we need to do in life is to find the root cause of our problems and deal with it, and not find excuses to cover up our problems. I respect you, lady. I think as we face the reality of life, then we get honest with ourselves and others. What we need to do in life is to find the root cause of our problems and deal with it, and not find excuses to cover up our problems. I respect you, lady.

]]> By: John D http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-989 John D Sat, 10 Jan 2009 21:16:20 +0000 http://chronicchicktalk.com/?p=753#comment-989 This is an inspiring post. There are so many parts of your experience that match what many of us go through no matter what the chronic condition may be. I know about lupus from seeing what it does to my wife - who's had the diagnosis for about 15 years but had symptoms well before it was official. Your writing is so moving and honest. Thank you for being so open about struggling with this illness. As to your questions, depression is certainly visible to someone who knows the symptoms - but they never want to talk with me directly about it. I wish they would. Others just see I'm not performing in my job well and start writing me off. And it took me many years to learn what depression was and then to admit its full impact on my life. But I did get there, pretty late but I got there. This is an inspiring post. There are so many parts of your experience that match what many of us go through no matter what the chronic condition may be. I know about lupus from seeing what it does to my wife – who’s had the diagnosis for about 15 years but had symptoms well before it was official. Your writing is so moving and honest. Thank you for being so open about struggling with this illness.

As to your questions, depression is certainly visible to someone who knows the symptoms – but they never want to talk with me directly about it. I wish they would. Others just see I’m not performing in my job well and start writing me off. And it took me many years to learn what depression was and then to admit its full impact on my life. But I did get there, pretty late but I got there.

]]> By: milet http://chronicchicktalk.com/2009/01/honesty-and-living-with-chronic-illness/comment-page-1/#comment-988 milet Fri, 09 Jan 2009 12:44:18 +0000 http://chronicchicktalk.com/?p=753#comment-988 i feel uncomfortable with people staring at me like i am an alien. i would rather they ask me what's wrong with me because i always wanted to share my story with them. because somehow i feel that having them know the story behind will give them a bit of understanding about lupus. since lupus is not that popular. about honesty. i got honest with myself when about 2 years of dealing with lupus. at first i got depressed everytime i can't do something because i have lupus but later when my boyfriend then husband talk to me and showed me i am still lucky despite of the disease, i got to accept my new life. and acceptance have help me a lot. i feel uncomfortable with people staring at me like i am an alien. i would rather they ask me what’s wrong with me because i always wanted to share my story with them. because somehow i feel that having them know the story behind will give them a bit of understanding about lupus. since lupus is not that popular.

about honesty. i got honest with myself when about 2 years of dealing with lupus. at first i got depressed everytime i can’t do something because i have lupus but later when my boyfriend then husband talk to me and showed me i am still lucky despite of the disease, i got to accept my new life. and acceptance have help me a lot.

]]>