tag:blogger.com,1999:blog-22576999.post5808805880661574702..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: Emotional Cost of the Disability ProcessSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-22576999.post-16895191415191095902012-11-29T23:02:43.912-05:002012-11-29T23:02:43.912-05:00Hi again Sue,
This will sound very weird, but fro...Hi again Sue,<br /><br />This will sound very weird, but from my experience, if they government believes that you can work in any way, or at any level, then they will deny you disability. And as unfair as this will sound, if they see that you've been writing a blog for years, then they'll look at that and probably conclude, "She can work!"<br /><br />I don't know if you can take the blog offline or not, but it's probably hurting your chances of approval.Jannoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-85331141739592003242012-11-26T10:03:47.052-05:002012-11-26T10:03:47.052-05:00Char -
We haven't pursued disability for Jam...Char - <br /><br />We haven't pursued disability for Jamie because so far, he is keeping up with school. Also, he has 3 different tick infections that are being treated, so we have hopes that he will continue to improve, even though we know he has a long road ahead of him.<br /><br />If you do decide to apply for the girls, I would definitely do the exercise testing at Ithaca. I didn't do it only because I would have had to travel quite a distance which equals a lot more money plus even more exhaustion/post-crash, but I thought long and hard about it.<br /><br />That exercise testing - available only at Ithaca, CA, and NC - gives you the best shot at being approved for disability. And the cost was $1500 last time I checked. If I lived closer, I would have definitely done it.<br /><br />Thanks for the kind words!<br /><br />Sue Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-86426880928958767492012-11-25T12:29:30.778-05:002012-11-25T12:29:30.778-05:00Dear Sue, I am reading this today as I have been r...Dear Sue, I am reading this today as I have been reunited with my computer after Aubrey's week long hospital stay. Matt and I spent our morning walk talking about applying for disability for the girls. This is the last thing we want to do! Always thought there was another solution but what can you do when you can't DO much sitting up?? We too have minimal medical evidence - but 5 years of experience. Our concern is that if we don't apply now it may be tougher later for the girls. If anything should happen to us - where would that leave them and we are scared of having to support 2 of them forever. Have you thought of applying for Jamie? I always thought "where there's a will there's a way", but I see them have the will - just not the way on any consistent basis. I couldn't even hire them at my own office as they couldn't work regular hours reliably - that is soooo sad. There is the 2 day stress test being done at Ithaca College which should offer some documentation. Over $2000/person and usually creates a tough crash so we have stalled on this, but are now considering it. We also have to decide if we will get another port for home saline treatment - also not covered by insurance and expensive - but concern bc of this recent infection. Oh the choices we get to make!! Any way - I am sorry for all the grief this process has caused you. Know that you have been an invaluable source of information, understanding and hope for all of us out here in cyberspace trying to help our kids. What you DO makes a difference to all of us!!! Thanks! CharCharhttps://www.blogger.com/profile/09786274543942041822noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-6931943025700882262012-11-22T06:03:54.106-05:002012-11-22T06:03:54.106-05:00Good luck, Sue. My doctor said "completely an...Good luck, Sue. My doctor said "completely and permanent" twenty-three years ago and it made all the difference. I still think that the future can change, (hey, who is to say that we won't find a cure for paralyzed people or Parkinson's one day, too?)but for today, I'm still completely disabled.Beatrice Desperhttps://www.blogger.com/profile/10843520699216089362noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-64887317571520751032012-11-20T09:04:21.418-05:002012-11-20T09:04:21.418-05:00Thanks for your kind words, D. I am so sorry to h...Thanks for your kind words, D. I am so sorry to hear how much your daughter is suffering. Yes, the loss of productivity is one of the hardest parts of this illness.<br /><br />Even though your daughter is a bit older, you are welcome to join our Parents' group on Facebook - there are LOTS of parents there in the same situation as you - it is a very informative and supportive group. here is the link:<br /><br />http://www.facebook.com/groups/164665786958252/<br /><br />Thanks for writing - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-66853812661965819872012-11-19T18:20:01.716-05:002012-11-19T18:20:01.716-05:00THANK YOU.
My daughter, age 28, has OI/POTS, CFID...THANK YOU. <br />My daughter, age 28, has OI/POTS, CFIDS/ME & Fibromyalgia and has been unable to attend classes or work for about 4 years. She became ill 6 1/2 years ago and has been living with me in a tiny 2-room apartment for the last 2.5 years. We STILL have not applied for disability for her - even though we know it gets harder by the month to get it - because we can't quite deal with the fact that this may, in fact, be permanent; and she should have had her whole life ahead of her. <br />When she became ill, she was in school with an ROTC contract with the U.S. Marines. She has wanted to be a Marine since she was a young child. And now she spends most of her days in pain and/or exhausted watching TV and reading (which sometimes she just can't.) <br /><br />You state so clearly that which is her/our biggest loss - the ability to contribute, to NOT be a burden. That makes her more suicidal than the pain and exhaustion. These days we are trying to find FLEXIBLE, no-regular-commitment volunteer opportunities for her; but even in NYC that can be hard. <br /><br />I will bookmark your 11/16/12 blog entry and share it with others. Thanks to your clarity, maybe we won't have to explain Jess' situation AGAIN to someone - well meaning or not. <br /><br />THANK YOU. D Cunningham in NYCnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-41774095408839244752012-11-19T16:04:29.026-05:002012-11-19T16:04:29.026-05:00Sue, I have been through this exact same process. ...Sue, I have been through this exact same process. I also succeeded in my ALJ Social Security hearing. If you want to talk about either, or both, please let me know. I would be very happy to discuss with you.Jennie Spotilahttp://www.occupycfs.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-9233484399608476562012-11-18T02:03:47.151-05:002012-11-18T02:03:47.151-05:00This was heartbreaking to read, Sue, and very fami...This was heartbreaking to read, Sue, and very familiar from my own life. Thank you for sharing so openly. It kills me how "invisible" CFS still is! It's one thing to feel rotten most of the time. It's another to have to waste precious energy convincing people of that fact. I'm rooting for you!Janettehttp://janettehillis-jaffe.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-61583018248908703952012-11-17T13:36:29.343-05:002012-11-17T13:36:29.343-05:00Ah, my people! I knew you guys would understand. ...Ah, my people! I knew you guys would understand. Thanks - as always - for all the support and words of comfort. I feel even worse today, but it really does help to know there are friends out there who understand.<br /><br />Nap time...<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-14292895525318604042012-11-17T12:41:25.357-05:002012-11-17T12:41:25.357-05:00Dreadful dreadful time for you Sue: and you know I...Dreadful dreadful time for you Sue: and you know I understand. The notion of not being able to sit up for 2 hours without pain or suffering would be seen as evidence that you could sit at a work station in UK and would not garner any points.<br /><br />This is link to the 'descriptors' used in U.K. <br /><br />You have to get at least 16 points to qualify for any support here: <br />http://www.tameside.gov.uk/esa/wca<br /><br />I really do not understand why disabled and chronically ill people are being so demonised and persecuted: especially people with M.E./CFS. It's so hard to communicate all the subtleties of 'our' difficulties.<br /><br />Thinking of you and walking with you Sue x<br /><br />Cusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-57085535246224773952012-11-17T12:38:52.026-05:002012-11-17T12:38:52.026-05:00Everything you say here is so familiar....I hated ...Everything you say here is so familiar....I hated having to go through this, it's just a reminder of everything lost dedged up again. I was really lucky (although I did have to leave all my friends in the States as I was told I'd have no chance there with a CFS diganosis). I did get permenant disbility. Partly due to my diagnoses of sleep disorder as that Dr. was really good at helping M.E. patients get disability. The stange this is I thing that my sleep problems are fairly minor, but they showed up well in the testing. So, if it's the OI and POTS that gets it for you, whatever. My fingers are crossed - all of them. And your days aren't over to write a book. I have a similar wish to do that. And I can so relate to your longing to exercise and hike!!!! upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-10750907287182723422012-11-17T12:26:21.411-05:002012-11-17T12:26:21.411-05:00Sue, I understand how painful this is for you. I ...Sue, I understand how painful this is for you. I put in so much energy trying to create a "normal" life for myself, working around my disability, that I often ignore the fact that I really am that sick. I know that you do the same. To be confronted with the reality of it is devastating. I wish I could be the comfort to you that you have always been to me. The reason I have worked so hard to adopt an optimistic and realistic approach to my disease is because of the amazing example you set. I pray that this will finally come out in your favor. Hang in there (don't we always?) and good luck.Shellihttps://www.blogger.com/profile/03068094486297918345noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-20340182947166118822012-11-17T10:07:50.748-05:002012-11-17T10:07:50.748-05:00CDC sais that CFS is a debilitating and complex di...CDC sais that CFS is a debilitating and complex disorder... <br /><br />http://www.cdc.gov/cfs/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-7136293391864973662012-11-16T17:25:17.363-05:002012-11-16T17:25:17.363-05:00This was hard for me to read as I both feel for yo...This was hard for me to read as I both feel for you and had a lot of bad memories of my own experience come up. I've been through this process too and felt all the same things you're experiencing. It's so hard and I'm glad you're expressing yourself here and hopefully getting some support, because it most certainly is needed during something like this. Wishing you the best and great success in winning this hearing. Sounds like you have a lot of support from your doctors so I hope that will tip things in your favor.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-49365699561940146572012-11-16T16:13:14.044-05:002012-11-16T16:13:14.044-05:00<3<3DolceVitahttps://www.blogger.com/profile/04019903072270401694noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-49192862531308501342012-11-16T13:39:39.617-05:002012-11-16T13:39:39.617-05:00Sorry babe.
Love, kenSorry babe. <br />Love, kenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-2317133382173281272012-11-16T13:08:41.471-05:002012-11-16T13:08:41.471-05:00Dear Sue - this made me cry - the emotional and ph...Dear Sue - this made me cry - the emotional and physical toll of applying for disability is on top of anyone's list for a crash...be kind to yourself and realize how much focus and attention to detail this process has taken and when you receive what you deserve, may you relax and it bring you a sense of peace -and accomplishment not only for yourself but for future individuals trying for the same thing...you are continually pushing the limits of this illness and awareness - and perhaps that Zumba class - well maybe its time to just go and listen to the music and tap your toes - not what we want - but what you deserve to be a part of...wishing you all the best. hhkdhttps://www.blogger.com/profile/03606859927429573387noreply@blogger.com