tag:blogger.com,1999:blog-4028396458278807322.comments2012-03-11T07:42:19.929-07:00MS: Do your part instead of whining about it!Unknownnoreply@blogger.comBlogger15125tag:blogger.com,1999:blog-4028396458278807322.post-71439213895971708972012-03-11T07:42:19.929-07:002012-03-11T07:42:19.929-07:00Thank you! That was great. Insightful!Thank you! That was great. Insightful!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-18758436629060135232011-04-18T08:22:54.474-07:002011-04-18T08:22:54.474-07:00I agree. baby steps. Whatever works.I agree. baby steps. Whatever works.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-45531043864371630452011-03-20T04:36:21.797-07:002011-03-20T04:36:21.797-07:00This comment has been removed by a blog administrator.VitaminD3Worldhttps://www.blogger.com/profile/05901947038973409842noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-55445649558718942992011-03-03T16:49:01.697-08:002011-03-03T16:49:01.697-08:00I'm new to your blog. Looking forward to heari...I'm new to your blog. Looking forward to hearing more of your story.<br /><br />Best,<br />Hua <br /><a href="http://www.healthcentral.com" rel="nofollow">healthcentral.com</a>Huahttps://www.blogger.com/profile/04703549526338294520noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-47188774437764743792011-02-01T05:10:42.945-08:002011-02-01T05:10:42.945-08:00Great Blog, just joined today, even though you &am...Great Blog, just joined today, even though you & my husband have different diseases ( he has bulbar onset ALS ) I can relate to your struggles & especially with the speech, he sounds like he has had 10 shots of whiskey straight up, it really bothers him & other days he is very excepting.kimhttp://loulouhead.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-35637560052571771412010-12-04T15:30:37.360-08:002010-12-04T15:30:37.360-08:00I'm so glad I found you! I started blogging ab...I'm so glad I found you! I started blogging about a year ago and I'm having so much fun! I never knew there were so many MSers out there! I guess it makes sense, we're good at sitting and typing!!<br /><br />I look forward to hearing the rest of the story, yours and everyone else's!<br />Linda from AlaskaLinda G. Coxhttp://www.lindagraceonline.comnoreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-44593367568030515162010-12-04T04:01:27.614-08:002010-12-04T04:01:27.614-08:00Johnny, we seem to have a lot in common. I used t...Johnny, we seem to have a lot in common. I used to think that I was superman and could do everything. Actually, I still think that, but am OK with doing it slower and in my own way. My nemesis is not MS, but Parkinson's disease. It also has been prostate cancer and nine surgeries from a motorcycle accident when I was younger.<br /><br />I dedicate myself now to helping others realize that they can overcome obstacles in their lives and enjoy themselves despite whatever situation they are in.<br /><br />Thank you for spreading the word that we have a choice to control our situations instead of letting our situations control us. Randy Pausch said it best, "We can't change the cards we are dealt, just how we play the hand."<br /><br />Be well and keep smiling.Richard Londonhttp://www.ahandbookforlife.comnoreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-7754671776016435462010-11-14T05:29:51.883-08:002010-11-14T05:29:51.883-08:00Believe me - it's not you. I'm referring ...Believe me - it's not you. I'm referring to the blogs I read where people talk about how awful their life is and how nobody understands what we're going through. Are you (they) really going to let that ruin their day? I'm not going to call anybody out - I'm sure they know who they are...<br /><br />I don't think you're bitter - I like you and like the way you call me out. I need that - keeps me relatively honest. I'm the type of person that likes to make sure my feet are on the ground...<br /><br />Thanks and keep 'em coming, Diane!Jim Turkhttps://www.blogger.com/profile/15123064769495715804noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-9863973205519460772010-11-13T09:05:13.782-08:002010-11-13T09:05:13.782-08:00I AGREE! I called you a newbie, does that mean I a...I AGREE! I called you a newbie, does that mean I am bitter? If you think I am bitter, please tell me why. If it is NOT me, tell me what bloggers have done that is bitter? I'm very interested in this. I DO take issue when newbies act all scared about ever having to use a cane or wheel chair, like it is the end of the world. And the constand search for a drug to "make it stop!' NEWS FLASH--THere isn't one. MS rolls on.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-65787360648806903682010-11-09T11:36:15.013-08:002010-11-09T11:36:15.013-08:00I spent 5 days in an ICU after 50,000IU D--TOO MUC...I spent 5 days in an ICU after 50,000IU D--TOO MUCH! My Dr should started lower and gone up. I had tested low. After getting sun for 3 months my level was normal. Now I am taking D myself, have increased to 2,000IU/day and will proceed up slowly. I think I mentioned this b4...keep receipts, it is tax deductible with note from Dr. (should you be audited, they wouldn't waste their time on me) I agree--why NOT try it!? Just ease into it.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-55172336963905942462010-11-06T07:19:22.890-07:002010-11-06T07:19:22.890-07:00Oh, you are a newbie! Welcome to the world of MS b...Oh, you are a newbie! Welcome to the world of MS blogging! Glad to hear you can take it. Me too, so I hope to hear from you more. Can I tease you even if I am NOT your brother? I think so. I wonder WHY you immediately went to, "I will be in a w/c within 5 years?" I NEVER considered that, in fact I was pretty sure my chances were good that I would NOT. I too had biggest "hit" while running. You will get much better sooner than later, have many good years ahead, just plan like you got MS, but LIVE. Oh, right on about Montel. What a baby. And HE has "people." HE is OUR face of MS?? UGH. You will run again. Now, THIS is the bad thing about drug trials, they will note your remission as a sign their drug did it. And THAT is a big problem with MS and drugs amd the time element, since most of us WILL "get better." I look forward to reading about your adventures.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-79133500961083514652010-11-06T07:05:50.966-07:002010-11-06T07:05:50.966-07:00This was a good post. I went through many thoughts...This was a good post. I went through many thoughts as I read it.<br />1. You make excellent points.<br />I got so worked up as I heard your words, I wanted to rush out for a trial. (We often have one SOMEWHERE in Seattle for something)<br />2. I started asking myself why I have not already done this. I am afraid of dying from a trial, or getting an irreversible condition "I have enough problems.")<br />3. That is basically why I do not participate and getting there for all the follow-ups would be very difficult (I haven't been able to get to an eye doctor in over 2 years!) So, not wanting to be a baby, I started searching for a better reason than fear and difficulty getting there. So, I found a point to disagree with you--I was asked to be in a Copaxone trial. I considered it and didn't do it. The drug passed FDA approval and went through all the hoops (I sure heard my neuro, who was involved in the research complain about all the hoops) within a couple years. I have also seen other new drugs get through pretty fast. The FDA system has been improved.<br />4. Continuing on with why I don't--I feel I DID, every time I shot up with Copaxone for 7 years! That was all one big test, my data constantly, and still, collected. I took a chance on a drug that they admitted they knew little about.<br />5. After all that, I still felt like a wuss and not very responsible to my "community." SO! I HAVE also been in tests for new therapies already! I did one for ovarian cancer in 1996.(I always forget I had cancer.) And one for the emotional effects of MS in 1998. And several MS surveys. Of course these were more of the giving DNA and completing forms variety. But, at least I feel a little less wussy. <br />5. I end up unconvinced that I am not a big baby. I will look into drug trials now, like I have not done since COP I trials.<br />6. You would make a good salesman.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-56418677525599903002010-10-31T07:29:20.014-07:002010-10-31T07:29:20.014-07:00I agree with you Johnny. I have Lupus (uncontroll...I agree with you Johnny. I have Lupus (uncontrolled thus far). The first year I felt like giving up and then decided to simply make a big deal about the days that I feel good and forget about the regular days of feeling bad. You said it perfectly when you said you have to play the hand you've been dealt and that is so true! Thanks for a great article.Cathy Jhttps://www.blogger.com/profile/01417814983038268788noreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-36048138526091515612010-10-27T11:24:43.452-07:002010-10-27T11:24:43.452-07:00Nice post, but I'm curious to learn more about...Nice post, but I'm curious to learn more about your story -- e.g., when were you diagnosed w/MS, where do you live, age/occupation, etc.? Will you be posting an "about" page?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4028396458278807322.post-41787369511206533262010-10-26T15:51:03.638-07:002010-10-26T15:51:03.638-07:00You are off to a good start-- you have good conten...You are off to a good start-- you have good content and a distinct voice. You will get a lot more traction when you have a lot more content.Write,write,write! Also, try commenting on lots of other ms blogs-- it helps everybody! Your Pal, SpinytimUnknownhttps://www.blogger.com/profile/07173164670236854707noreply@blogger.com