Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Dear Patti: Yes, it's very normal to break out into tears during this time! It is such an emotional burden to deal with being ill along with having to deal with everyday life. I still burst into tears at the slightest provocation. You are real vulnerable right now, and a lot of the medications (especially prednisone) really intensify emotion. Chin up. We understand. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 PATTI: Tears come so fast for me when I don't have a good day. Yes my husband does not understand I mean really understand the pain and the depression a person can have when they are sick. I took my husband with me to the Mayo Clinic the last two times and I think I will bring my sister next time. We had a good time and she understands somewhat what I am going through. She has the autoimmune attaching her large intestines. But I get to talk to her about one a week if I am lucky. Her husband of three years does not like her with me. Since they were married, I don't see her at all except if I need to have my teeth clean ( her husband is a dentist). So I was really lucky to find this group to air my problems and joys with. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Love your message. You summed up how I was feeling exactly. Yes it can be extremely frustrating and scary too. But the goal is to get better not tack on another diagnosis, right? So it just feels like you are swimming against the current sometimes. I still have fight left in me so i will adapt and find my way around this temporary setback. I know what you mean about the new doc not being quite like the one you have known for years. That is kind of how I feel. I keep comparing the docs to my general doc in TN and my rheumatologist in TN. They were more personable, great bedside manners. I could talk to them about my problems, family, life, social, etc., as well as RA. I needed that, especially with this disease. And if I was hesistant in taking a medication it was not taken as a threat to their intelligence or telling them how to do their job. I get that a lot here in GA. The docs are hostilie easily offended. On my last hospital visit to my new place of care, I was told I was being " honery " after asking if I could go to the bathroom before she put my monitors back on. What!?? Maybe I haven't found the right place but with a disease like this and all of the new complications I don't have a lot of time to play around with especially when it takes months to get in to see someone as a new patient. So yeah I miss my old docs and traveled 300 miles to see them for a long time until I had no choice but to find someone here. I hope you feeling better these days too and thanks so much for the prayers. I love the prayers. Many blessings, Ebony > > Hi Ebony! > I hope you are feeling better after your scary ordeal! > It's very very frustrating when every time we go to > the doctor there is something new! I was sent to a > cardiologist when I was 26 because they thought my > heart could be a reason my balance is off all of the > time. I have been going to one for my 10th year now. > I have an arrythmia, enlarged ventricle, mitrol valve > prolapes, tietzie syndrome, and hypotension. I > started seeing a cardiologist who had treated both of > my grandparents when they had been alive. He used to > tell me all the time, that I was going to live to be > 90! He also chatted to me about the FMS and > inflammatory arthritis on my visits. He retired a > couple of years ago to spend time with his family. I > now see one who is in my small area from Harvard. > He's very good, and did an EKG a few months back to > make sure my medications were not affecting my heart. > It's just really clinical with him and even though he > is great at what he does, I really miss the one I > began with originally. I have you in my thoughts and > prayers! > in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Hi ... Please do contact me...as far as helping your web site along...I'd be most happy to contribute in some extended way...and as I read more & more, every day...I'll hope to have a better idea...of how to help out...in a unique and special way... Best Wishes, Jim Re: Hi ... Jim,I am sure I am not the only person who would be interested in seeingyour photo. We have a number of photos and x-rays posted in our"Photos" section at the Feisty website. Just click on "Photos" in thelist to the left on your monitor. (I will post my own x-rays if I everfigure out how, duh. Loriann, one of our two erstwhile comoderators -- is the other, and they are both terrific people and a lotnicer than I am sometimes, ahem -- sent me a post telling me theprocedure, and I have saved it and am now encouraged to study it oncemore and do as she advised so as to upload my lovely -- NOT -- bionicspine for all to see.)Sight unseen, however, I have NO doubt that you are a totally, 100%credentialed and qualified member of this group. You have been throughso much, as have so many of us if not all of us who got here beforeyou. In fact, you had only to mention "Luque rods" to gain immediateentrance. We only learned in the past year or so that people withLuque rods are now going through the same hell as those of us with theclassic Harrington rod. I haven't checked the current membership count but expect it is wellover 600. I started this group in 2000 at the urging of several otherpeople. There were 8 of us at the beginning, and we were fairlyclueless in those days. Thanks to a wonderful and articulate pioneer, Mina, who had posted her own flatback saga and some earlymedical information online, we at least knew a little more than ourdoctors were telling us. After a year or so, the group really tookoff, and it has been going strong ever since. We also have anoffshoot-group which is very large and active as well as very sociable-- I believe they have even had a couple of group get-togethersoutside the cyber world; they are called "Flatback-Revised," and arealso a group. It is wonderful to see so many flatback victimstaking things in their own hands, sharing war stories and factualinformation, being active and informed in their own spinal care. It is also wonderful to see so much collective positive thinking,humor, etc. There is no way to survive this thing without some of thatgood stuff. In that regard, especially, we are blessed to have youamong us. It also occurs to me that with all your energy, you might have someinterest in volunteering your efforts to this group in some regard(apart from the posting that many of us do here). I am always sneakilyor shamelessly begging people to volunteer for anything that intereststhem -- especially people who have any conceivable interest inupdating any of our various features (again, see the list on the leftat our site and click on anything that might interest you). I amforever indebted to the folks who have volunteered for one challengeor another over the years, whether for a short-term project or anopen-ended moderator spot. So let me know if there is anything youwould like to do in this regard -- and that goes for all of the restof you guys as well. Remember that you do not need to sign on foranything permanent and you can get out whenever you might need to; weall understand when medical contingencies or "real life" intervenes.Best,>> Hi , > > Once again, my sincerest apologies, for not being more reserved withmy initial comments...> > I probably could float out to you a photo of me...that shows myshape and degree of disability...Maybe that would soothe your fears...> > Yes..I am a very happy soul and I do have a great bunch of friendswho support me...and I don't ever dwell on negative stuff much...likemy increasing deformity getting worse...> > Anyway...If you'd like to see me...by all means...drop me an e-mailaddress to send it to... > > Thank you...Jim...> No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.12/1911 - Release Date: 1/23/2009 7:28 AM Quote Link to comment Share on other sites More sharing options...
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