Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Lucy, we have a couple of members who have had PSC for 30+ years and are just now experiencing difficulties. I've had UC for about 26 years now, still have all my equipment (for what it's worth!) except my gallbladder. Diagnosis IS a tough time - hang in there. Under http://health.groups.yahoo.com/group//links, there's one called " New members help " that contains a lot of good information to get you started. They will answer some of the more common questions. Keep asking! You can also " mine " the archives at http://groups.yahoo.com/group//messages. Just sign in to Yahoo and search on any topic. Under " Photos " you'll be able to see some of us (and our pets). As we usually say, glad you found us, but sorry you found us. This is an extremely knowledgeable group - you'll get your questions answered. Take care. Arne 52 - UC 9/77 - PSC 4/00 Alive and (mostly) well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 I can understand you being scared Liz. I am 41 and a single Mom and still have to work full time and it is extremely hard to force myself out of bed everyday and go to work for 9 hours. I know how scarey it is to think that you might not be able to work in the future. I, unfortunately, don't have any suggestions on how to handle that. I know that I absolutely can not file for Social Security Disability because I can not live off the amount. I hope to you get some answers. N. > > Hi all, > I am pretty new to this group. I have just been told I have it! I am so glad I found this group. I have no idea what is suppose to happen next. I have been at the hospital everyday for 2months. Today is the only day I don't have to go. I was instructed by my doctor to apply for Social Security Disability or atleast get the ball rolling because working for me will be long in the furture or never at all. I was wondering if anyone has any advice? I am still young I just turned 30 the thought of never being able to work again scares me? > Thanks > Liz > > > > > http://www.surfjunky.com/?r=elizabethmoscow > Are you a Surf Junky, it pays to be! > > http://www.sendmoreinfo.com/ID/2991777 > Get Paid to read emails! This is an awesome company! > > > www.pamperedchef.biz/alohacookingwithkim > My good friend sells Pampered Chef! > > > > > > > > > > > > > --------------------------------- > Yahoo! Shopping > Find Great Deals on Holiday Gifts at Yahoo! Shopping > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 I can understand you being scared Liz. I am 41 and a single Mom and still have to work full time and it is extremely hard to force myself out of bed everyday and go to work for 9 hours. I know how scarey it is to think that you might not be able to work in the future. I, unfortunately, don't have any suggestions on how to handle that. I know that I absolutely can not file for Social Security Disability because I can not live off the amount. I hope to you get some answers. N. > > Hi all, > I am pretty new to this group. I have just been told I have it! I am so glad I found this group. I have no idea what is suppose to happen next. I have been at the hospital everyday for 2months. Today is the only day I don't have to go. I was instructed by my doctor to apply for Social Security Disability or atleast get the ball rolling because working for me will be long in the furture or never at all. I was wondering if anyone has any advice? I am still young I just turned 30 the thought of never being able to work again scares me? > Thanks > Liz > > > > > http://www.surfjunky.com/?r=elizabethmoscow > Are you a Surf Junky, it pays to be! > > http://www.sendmoreinfo.com/ID/2991777 > Get Paid to read emails! This is an awesome company! > > > www.pamperedchef.biz/alohacookingwithkim > My good friend sells Pampered Chef! > > > > > > > > > > > > > --------------------------------- > Yahoo! Shopping > Find Great Deals on Holiday Gifts at Yahoo! Shopping > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Greetings to the members, My name is Jewel. I am 23 years old, and live in the Fort Bragg area of North Carolina, USA. I have been married to my wonderful soldier hubby for two years next month. Last July, I sustained an injury from an alkali burn, which caused cataracts, congentivial and corneal defects, and secondary glaucoma, leading to my being legally blind. We don't know how much of my vision I'll get back. I can currently see about three feet before images disappear into fog. The reason I joined this group is because of another problem I have. I have for many years dealt with severe pain that comes and goes. Muscle tightening and spasms, shooting pain, sensitive burning skin, and severe headaches are some of the worst of it. Easy to fatigue, slow to recover. I am currenlty in the process of finally getting down to the bottom of it. We've ruled out the basics such as rheumatoid arthritis, and my doctor thinks it is likely to be MS or Fibromyalgia, though she did order a blood test to further rule out Lupus, just in case. I've got an MRI coming up soon to see if it's MS, and I personally hope that it's MS rather than Fibro, because I've heard MS is at least treatable, where as Fibro is simply 'manageable'...and I remember seeing my father going through the problems of Firbromyalgia, and would not wish to follow in his footsteps in that manner (He had Desert Storm Syndrome, which caused Fibromyalgia, and ultimately led to his suicidal death after they took him off a drug cold turkey that was balancing out his depression and suicidal feelings). I and my husband are medival re-creationists, members of the Society for Creative Anachronism. Before my eye injury, we both enjoyed painting, but now only he can do that...I also enjoyed sewing and hand embroidery among other medieval lady's crafts. These days, I enjoy playing online text-based roleplaying games from Skotos, Inc., creating new hairstyles with my nearly waist-length hair, and organizing the apartment to make things ever more comfortable for my husband and me. We are also both cat lovers, and have one cat, Maggie (short for Magdalene). Maggie is my baby, and when I am in severe pain, she cuddles with me for hours on end...she will not cuddle with me normally, but knows when I need her most. I plan to train her to assist me with simple things such as finding little things (like pens and keys), which I have difficulty with sometimes between my low vision and my pain in crouching down), reminding me to take my meds (I have a bad (foggy) memory), and things like that. Maybe I'll go through the process to make her a registred service animal...not really necessary though, as I rarely go out anymore due to lack of ability to drive and lack of energy. I'm sorry for rambling on and on...online groups are where I can express myself and really talk. I hope you don't mind I'm bad about asking lots of questions, but I also try to answer questions that people have about things in their life, too. So maybe it evens out? But that's me, and I look forward to getting to know the group. ~Jewel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Jewel wrote: > I personally hope that > it's MS rather than Fibro, because I've heard MS is at least > treatable, where as Fibro is simply 'manageable'. Jewel I hope with all my heart that it is NOT Multiple Sclerosis. MS is a much more serious diagnosis than Fibromyalgia. MS is normally progressive, Fibro is just persistent. I'm glad to hear they've ruled out rheumatoid arthritis. That's the most nasty form of arthritis to have. Lyndi Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Hi Jewel, welcome. I am so sorry to hear about your condition. Is there any hope of recovery? I know what you mean about cats, I had 2 of them, they were brothers. One of them, Tiger, was our resident nurse. Whenever anyone did not feel well, he would lay close to them and take care of them. One time I wasn't feeling well and he laid on my headboard of my bed until I got better. We had to put him down (he was 14) and then his brother took over until we had to put him down (at age 16), I love cats but no more it hurt too much to have to leave them. Jan (Fargo) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 I admit I know very little about these conditions. I know my symptoms, as I've had them for some time, but I don't really know the conditions that it might be diagnosed as. On top of the chronic pain and visual impairment, I have Delayed Sleep Phase Syndrome (my normal sleep time is 4am-noon, though today's was messed up thanks to Vicodin knocking me out to sleep early in the afternoon). Borderline Personality Disorder with OCD and PTSD features (I was emotionally and verbally abused by my mother as a child. It doesn't get to me much anymore, except the OCD features which make me very sensitive to organization and things being " out of place " which makes it kinda crazy around my apartment, because my husband is a 'let it lie where it falls' sort of guy. When people get very belligerant (I think that's the right word), and start cursing and yelling, I have to run and hide and usually end up in a sobbing mess, even if the yelling and cursing had absolutely nothing to do with me, because I'm so used to it being about me, that I guess my mind just kinda assumes it is about me. I don't know. Anyway, yea Jan, might I suggest fostering? ing cats is a great way to have a kitty around, but not have to go through the pain of losing them, as they go to their new adoptive family often after a few months with you. I fostered for a bit before adopting one of my fosterees, Maggie - she's the light of my life. She seems to understand my pain and snuggles with me, like your cats did, and also seems to understand that I can't see her. When I get close to her, she gives a little 'chirp' (prrrow) to let me know where she is, and if I call her, she gives the chirp, but if I keep calling her, she walks up to me to let me know 'I'm here!' She also likes to play chase with me. She'll run with her bell going crazy, then will get stealthy and only make small rings occassionally..and the goal is for me to find her. It's sooo funny; my husband thinks it's the most adorable thing ever >Lyndi Moderator wrote: >Jewel > > I hope with all my heart that it is NOT Multiple Sclerosis. MS is a much more serious diagnosis than Fibromyalgia. MS is normally progressive, Fibro is just persistent. I'm glad to hear they've ruled out rheumatoid arthritis. That's the most nasty form of arthritis to have. Quote Link to comment Share on other sites More sharing options...
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