tag:blogger.com,1999:blog-3500936220214961312.post5935251556644871860..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Letter from Mother of MS PatientLisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-3500936220214961312.post-39282731243498661692009-01-08T17:16:00.000-05:002009-01-08T17:16:00.000-05:00Thank you all for such straight talk. This is very...Thank you all for such straight talk. This is very inspiring and insightful...Unknownhttps://www.blogger.com/profile/11349180504237910958noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-82897838401922487852008-03-02T12:58:00.000-05:002008-03-02T12:58:00.000-05:00As with any other disabilities, I need to trust ou...As with any other disabilities, I need to trust our medical experts as well as my identification with MS (along with other disabilities). <BR/><BR/>I dislike "feel good" campaign because they do this to emotionally prompt you to do something that is often not in your character. <BR/><BR/>To me "feel good" campaign should be without agenda. Yes... there is always hope in all catagories including disabilities (not just MS). I do not like taking drugs but I will take them if they help me.Anonymoushttps://www.blogger.com/profile/12636656959074070720noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-54349964515117718592008-03-02T11:06:00.000-05:002008-03-02T11:06:00.000-05:00Jojo - Keep On Keepin On Ooooh-ooohhhey-yeeeahYou ...<B>Jojo - Keep On Keepin On</B> <BR/><BR/>Ooooh-ooohh<BR/>hey-yeeeah<BR/><BR/>You got to keep on keepin on<BR/>You got to keep your head up high<BR/>You gotta work with what you've got<BR/>And someday you will flyyyyy<BR/><BR/>VERSE 1:<BR/>Poor kids pouring cold water in their cereal<BR/>Second hand clothes<BR/>Surviving is pivotal<BR/>Praying to God at night<BR/>That things'll get better soon<BR/><BR/>I remember when I was in your position<BR/>Tried to tell people my story<BR/>But no one would really listen<BR/>I know times are hard right now<BR/>Happiness is hard to find right now<BR/><BR/>CHORUS:<BR/>You got to keep on keepin on<BR/>You got to keep your head up high<BR/>You gotta work with what you've got<BR/>And someday you will flyyyyy<BR/>You got to keep on keepin on<BR/>You got to keep your head up high<BR/>You gotta work with what you've got<BR/>And someday you will flyyyyy<BR/><BR/>VERSE 2:<BR/>Lookin out the window to a rose grows in concrete<BR/>Dreamin' of the day when you'll be standing on your own feet<BR/>Hard to find the good in such a scene so bad (scene so sad)*<BR/>Seein other kids with their Tims on<BR/>Fresh with Air Ones, wish I had one<BR/>Longin' for a day when you get your chance to shine<BR/>Don't worry, there'll come a tiiiiiiime<BR/><BR/>(CHORUS)<BR/><BR/>BRIDGE:<BR/>Young girl sittin' on the steps of her duplex (mmmm)<BR/>Why you gotta choose to make my life so complex<BR/>Breathing to the beat of a slow, sad drum<BR/>Trouble leaves some moments for some fun<BR/>I can almost guarantee you<BR/>It'll get better todaaaaaayyy<BR/><BR/>(CHORUS)Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-55588843653929956142008-03-02T11:03:00.000-05:002008-03-02T11:03:00.000-05:00Ladies, thank you so much for your kind words and ...Ladies, thank you so much for your kind words and strong support. I am deeply touched.<BR/><BR/>To truly understand the opinions of another requires us to consider the experiences of that other person. This is one of the more difficult aspects of being human - we tend to look at things from our own point of view.<BR/><BR/>Only those folks who have struggled with the financial aspect of trying to gain and keep access to one of the DMDs for my MS might understand my frustration with 'the system' and the deceptive propaganda of pharma-related organizations. The most striking example which first (and always) comes to mind is the 'Partnership for Prescription Assistance' by PhRMA, a reputation-repairing, self-promotional campaign with very little substance.<BR/><BR/>I think that the majority of self-employed persons who do have individual health insurance would not understand my struggles if they had not had the same experiences. There is not a level playing field out there.<BR/><BR/>Although MS doesn't discriminate, people do and it is impossible not to bring your own opinions to the game.<BR/><BR/>I believe that Gregory's family has been reading more of 'Brass and Ivory' and I hope that they continue to do so. There is much positivity to be found here. I can emphasize with Mrs. Roehrich who as a mother doesn't want anything to hurt her son. Mothers often want to be able to take away their child's disease or pain. I know that my mother would have done anything to be able to take away my hurt and struggles while dealing with MS and RA. But as Diane says, it is my course in life not hers.<BR/><BR/>As a song once said - "you gotta keep on keepin' on" - and hopefully spread some love and joy along the way.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-26297400273971272082008-03-02T00:30:00.000-05:002008-03-02T00:30:00.000-05:00Well...DAMN YOU LISA, for causing us all to THINK ...Well...DAMN YOU LISA, for causing us all to THINK and form opinions! How dare you challenge our pointed little MS heads! LMAO<BR/><BR/>All I can say is, YOU ROCK, girl...I sure have missed some awfully good controversy over here while being sick with my CRAPPY CASE OF MS (Which I take Novantrone for, readers from other drug companies, and I STILL have relapses...sigh). Keep up the magnificent work here, Lisa...it's good to be slapped around a bit...brings us all back to consciousness.<BR/><BR/>Linda D. in SeattleBRAINCHEESEhttps://www.blogger.com/profile/04478852688645497036noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-11987827073778215702008-03-01T23:21:00.000-05:002008-03-01T23:21:00.000-05:00Dear Mrs. Roehrich,Did you read my previous commen...Dear Mrs. Roehrich,<BR/>Did you read my previous comment as to why your son may not be the fantastic image of MS for people living with MS? I will restate: MS takes many different courses. The majority of people will need a cane or wheelchair 5-15 years after diagnose. No drug co. under oath would say anything different, because that is the current reality of life with MS. People do not need stories of how MS will not affect your life, and you can still climb mountains---they need the truth. MS is a CHRONIC PROGRESSIVE DISEASE for the MAJORITY of those diagnosed. So what if Greg is A-OK now? So what if he is A-OK all his life? People with MS get hope from hearing from people who CAN'T climb mts. or ride bikes or hike or drive race cars YET STILL are happy with their lives. People who eat right, find ways to exercise, sharpened their emotional tools and planned for a life w/a disability after diagnosis. Drug companies do not want THOSE stories told and I am insulted by that. I have now and always had a good attitude about my MS; I had a good attitude when I was told I had ovarian cancer, but I would NEVER allow a major magazine (or any cancer drug co.) to USE the fact that I am happy, cancer free, an "inspiration!"==baloney! The majority of women with ovarian cancer will die. I am lucky that my course allowed me to live 13 years, PERIOD. After diagnosis I planned for the very likely possibility of death. My family, friends and co-workers found me to be inspiring with my ACCEPTANCE of my condition and continued positive love of life. Mrs. Roehrich, how many people with MS do you know who must use wheelchairs? How is your son an inspiration to them? Do you get it, yet? We are all happy to know a person with MS whose course is benign; who is in remission; but we also are happy to not be treated like children. (YOU had to tell your 19 year old son he had MS? Where was he? He would have been devastated? That is a shame, life is full of unpleasantness--I hope he is stronger now. We all need to be strong.) <BR/>Sincerely,<BR/>Diane- PS: People like Lisa research such issues for those too weak from MS to do so. We KNOW our Drs. take money from drug companies, we see now that 15-20yrs out most people taking drugs are exactly where they would have statisticaly been without them. We watch side effects change as time passes. We WANT a reason to TRUST, and we search for that. People like LISA inspire me! I am insulted that you would think we are looking for a reason to feel negative.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-89987522681535123752008-02-29T22:32:00.000-05:002008-02-29T22:32:00.000-05:00Lisa,I am having a difficult time putting my thoug...Lisa,<BR/>I am having a difficult time putting my thoughts into words at the moment about this issue. I'm going to give it my best shot late on a Friday night...<BR/>The questions Mrs. Roehrich asks are fair. I believe there is nothing wrong with Gregory having his face and attitude linked to MS, perhaps giving hope to a newly diagnosed MSer. What is wrong is her statement that everyone has the choice to take medications. Some don't have the financial ability to do that, they may have no insurance or insufficient coverage. They may not have the social network or support system in play to help them to take the meds (when I was newly diagnosed I was physically unable to give myself injections). The side effects are enough to cause many to forgo the treatments,<BR/>pre-existing conditions, like depression, may need even more treatment than the person is already undertaking, and remember that the DMDs are not indicated for all MS. These are all underlying factors that the PR company doesn't tell you about. Tell us the truth about these treatments and how much they cost and the burden to a family unit, not just the patient. It is fine to offer hope. But remember that hope is not ignoring the truth. It is about fixing on the best possible outcome, striving for it, and dealing with the obstacles that present themselves while doing so. PR companies don't give you the whole story, that's not what they are paid to do. And that's why we have little trust in PR feel good campaigns. <BR/>Rather than hire a PR company to promote a feel good campaign, I'd like to see the drug makers committing that money to more research, more services to disabled MSers, and bring the cost down of their existing medications. <BR/>I am thrilled that Gregory is able to do the things he wants to do and I do wish for him continued good health. And I sure hope he realizes how lucky he is to have such a wonderful support network in his family. Not all of us have that and that is part of my own PR campaign when speaking to folks about MS.<BR/><BR/>ShaunaAnonymoushttps://www.blogger.com/profile/08793047835261862513noreply@blogger.com