tag:blogger.com,1999:blog-32745596.comments2023-07-21T05:46:42.710-05:00Laughing All the Way... Through Chronic IllnessMarinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-32745596.post-40432932884109368482013-12-07T01:33:45.336-05:002013-12-07T01:33:45.336-05:00Very informative blogging, keep it up!Very informative blogging, keep it up!A1C Charthttp://a1cchart.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-1497437760502529902013-09-21T01:52:25.719-05:002013-09-21T01:52:25.719-05:00Hi,
The site is about Patience and Pacing, Robert...Hi,<br /><br />The site is about Patience and Pacing, <a href="http://www.ucomparehealthcare.com/drs/robert_tomlinson_jr/" rel="nofollow"><b>Robert Tomlinson MD</b></a> apply procedure perform by placing two pacing pads on the patient's chest, either in the anterior and lateral position or the anterior and posterior position, thanks a lot.Anonymoushttps://www.blogger.com/profile/10681487005356886112noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-47376666845803296422013-07-07T01:45:49.318-05:002013-07-07T01:45:49.318-05:00I'm in the same situation you are, I have Rheu...I'm in the same situation you are, I have Rheumatoid arthritis and Uveitis and also PV with some fibrosis. I'm currently taking humara with some results for my eyes and also, by some strange coincidence my blood counts. Most likely because all three illnesses ahve the same Jak pathway.<br />I have been bugging my rheumatologist to switch me to xeljanz, but she said it hasn't been proven to stop eye inflammation, yet.<br />It would be nice to get a three for one medication.<br />Very best of luck on your bone marrow transplant.Mary T.noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-9017293702137419452013-06-26T22:42:04.642-05:002013-06-26T22:42:04.642-05:00Funny you tell us about your test anxiety. I have ...Funny you tell us about your test anxiety. I have the same thing. I'm fact I have nightmares of missing a test that I was already nervous about.<br /><br />Each day is one step closer to your rebirth. We celebrate the young man and pray for goodness to,come to him.<br /><br />I love your optimism, drive, intelligence, warmth, humor and your friendship.<br /><br />Love ya,<br />Bonnie EvansBonnie Evanshttps://www.blogger.com/profile/09493718799661073722noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-24488686846830596042013-06-26T11:12:11.108-05:002013-06-26T11:12:11.108-05:00It is always a smart idea to get an second opinio...It is always a smart idea to get an second opinion in <a href="http://www.2ndradiologyopinion.com/symptoms/#neck" rel="nofollow"> cancer diagnosis Ontario</a> . Because, other general medical cases are usually straight forward. After diagnosis, treatments are made. So there is no need for a second opinion in most cases. But in case of cancer, there is much fear, many questions and misunderstanding. Anonymoushttps://www.blogger.com/profile/15835827178993442146noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-13176455006242983052013-06-21T11:55:20.618-05:002013-06-21T11:55:20.618-05:00On behalf of the Grand Rapids Be The Match team, Y...On behalf of the Grand Rapids Be The Match team, YIPEE! We were so happy to work with your family here in Michigan and celebrate with you in hearing this good news. Unknownhttps://www.blogger.com/profile/14994461307767347672noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-14933183886873579392013-06-15T21:36:24.200-05:002013-06-15T21:36:24.200-05:00I, too, have Polycythemia Vera. I also suffer fro...I, too, have Polycythemia Vera. I also suffer from Migraines. I started reading your blogs a couple of months ago. I think you are an amazing, strong woman to deal with your health issues (to put it mildly), raise a family, and still have the mindset to blog! I'm so glad I found this. You can really put things in perspective for me....and you use the medical terms that I hear at my doctor visits! I pray for you daily. And I pray that everything goes well with the transplant. Thank you for being an inspiration to me...Anonymoushttps://www.blogger.com/profile/06161332485353205669noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-68362485252915523182013-06-12T19:11:29.608-05:002013-06-12T19:11:29.608-05:00Oh Marina....I am SO EXCITED for you!!! I just re...Oh Marina....I am SO EXCITED for you!!! I just read your post to my Mom, who sends little "ohohohs" of happiness as well. This is such wonderful news! Please know I am sending you virtual hugs, and let me know if there's something I can do. =D<br /><br />HsnnshTreewomanhttps://www.blogger.com/profile/18166719331629360041noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-35123758241238986682013-05-09T07:46:15.761-05:002013-05-09T07:46:15.761-05:00Very touching and human! You are among many people...Very touching and human! You are among many people who go through the same feelings perhaps at different times. You are surrounded by thousands of people who are coming to help you one way or the other. Feed on that love and hope.Bonnie's Blogging Adventureshttps://www.blogger.com/profile/18322829224406097382noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-88515568576460408312013-04-24T15:17:46.250-05:002013-04-24T15:17:46.250-05:00Marina, you are such an inspiration as you meet ea...Marina, you are such an inspiration as you meet each new challenge of your illness with beauty and grace. I love you!! ConnieConniehttps://www.blogger.com/profile/00494317835655787613noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-2287280590498871562013-04-05T05:37:39.299-05:002013-04-05T05:37:39.299-05:00your positive attitude is a major factor in ... your positive attitude is a major factor in your success, so I'm adding mine and my prayers that you beat those odds. love you!Anonymoushttps://www.blogger.com/profile/06017909881824013505noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-52516804104511770502013-02-22T09:29:52.319-05:002013-02-22T09:29:52.319-05:00Marina - Sending you much hope! Genny had pMF and...Marina - Sending you much hope! Genny had pMF and MDS and went through an matched unrelated donor (MUD) stem cell transplant a year ago. All in all she is doing very well, even while dealing with GVHD. If you go to January 2012 on her facebook timeline you can read about her isolation period, day by day. Just go to http://www.facebook.com/GennysHopeFoundation<br /><br />MF sucks. Cancer sucks. But you will get through this and on to a better life. And you are so right -- laughter helps. Hugs to you.Anonymoushttps://www.blogger.com/profile/12345837765877242852noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-19163401124819339492013-02-21T21:26:18.784-05:002013-02-21T21:26:18.784-05:00Congratulations on your successful first blood tra...Congratulations on your successful first blood transfusion. It makes me humble also when I think about the donors who give blood. Thank goodness I can still so it on a regular basis. I have a friend who has donated over 100 pints of blood. I am in awe.Bonnie Evanshttps://www.blogger.com/profile/09493718799661073722noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-12401382154571897942013-02-18T18:07:37.608-05:002013-02-18T18:07:37.608-05:00At least with a BMT you would tackle both your dis...At least with a BMT you would tackle both your diseases. Mayo should have a case worker who will help up I get approval.i hope your HMO will allow you to go wherever you want for it to be done. There are only a handful of places that have good results thus it is imperative. First we need to get you a match! <br /><br />Supposedly only 10% OF MF patients mute into AML which we had been told. The old statement of the life expectancy of an MF patient is 3-5 years which is widely believed to be outdated. Joe muted into MF from PV in 2008 but then again his blood counts did not get as low as yours except during chemo for MCL and is the only time he needed blood transfusions. You are YOUNG for MF thus your chances of a successful BMT is high..<br /><br />A blood transfusion should give you some energy back but it will take a few times to get it up where you will feel the difference.<br /><br />Love ya, BONNIEBonnie Evanshttps://www.blogger.com/profile/09493718799661073722noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-67913337073750214822013-02-18T16:54:34.151-05:002013-02-18T16:54:34.151-05:00I am Martha's dad and she sent me your blog sp...I am Martha's dad and she sent me your blog spot. She has informed us of your problems.<br />You probably don't remember me ... I am the guy who stopped your ear bleeding at her house one evening and have played poker at your house.<br />I certainly hope that you come out of this horrible illness. Mayo has by far the best medical care and I am sure they will help you. I have a good friend here who was very very sick and stayed at their facility in Jacksonville for over 3 months and they cured him.<br />Please know that my wife and I will be thinking of you. Martha will keep us informed.<br />Do NOT give up fighting!!<br />Jim Caskey<br />(If the doctors at Mayo need some advice about stopping bleeding have them call me)<br />Anonymoushttps://www.blogger.com/profile/06517785772701771289noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-1161285181478586182013-02-18T16:05:16.028-05:002013-02-18T16:05:16.028-05:00Marina,
I am sending you as much love as I can via...Marina,<br />I am sending you as much love as I can via fingers and the worldwide web. I will be praying for you and your family. I pray God's goodness, grace and mercy cover you with healing and a donor match found quickly. I am on the Be the Match registry.<br />Much love, Ossie Living Life and Loving Ithttps://www.blogger.com/profile/07603625923926941894noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-45889133434400892332013-02-09T09:24:07.691-05:002013-02-09T09:24:07.691-05:00The poignant truth, every moment has more value wi...The poignant truth, every moment has more value with the understanding they are not infinite. This is true for every one of us, but our failure to come to face this makes our own lives less fully lived and our actions less beneficial for generations to come. I hope you have many, many, many more wonderful moment and better health in which to enjoy them. Your bravery in sharing, your humor, and positive energy are so inspiring to me! Thank you! Sending you healing energy.Jenniferhttps://www.blogger.com/profile/14008723216173753616noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-55679079825695223572013-01-17T00:05:42.492-05:002013-01-17T00:05:42.492-05:00I'm on Peg, too! I hope it works well for you....I'm on Peg, too! I hope it works well for you....I have very few symptoms, other than requiring 8-12 hours of sleep at night. <br /><br />Good luck!Mohttps://www.blogger.com/profile/16178945495724582861noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-851744342396694102013-01-16T23:56:25.734-05:002013-01-16T23:56:25.734-05:00A Google search for other bloggers who write about...A Google search for other bloggers who write about PV brought me to your site...love that you call it Polly! Makes it seem less terrifying :-)<br /><br />I occasionally write about my experiences with PV here...http://mos-life.blogspot.com/. <br /><br />Sorry about the migraines! Luckily, I haven't had a single one since I got my counts under control (knock on wood)...but I do remember them well...hang in there. Mohttps://www.blogger.com/profile/16178945495724582861noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-49148724782102053702012-02-09T18:57:05.090-05:002012-02-09T18:57:05.090-05:00I work at 23andMe, a research company that believe...I work at 23andMe, a research company that believes in patient-driven research. We’re reaching out to bloggers and other patients to push MPN research forward.<br /><br />We have a new way of conducting research that is much faster and simpler, and we believe in collaborating with study participants and giving their data back to them.<br /><br />Our goal is to recruit 1,000 people with MPNs Together, we can make advances that will benefit the entire patient community. You can read more at https://www.23andme.com/mpn/<br /><br />If anyone is interested, I’d love to send you a free saliva kit.<br /><br />Best regards,<br />Meghan<br />mpn-help@23andme.comMeghanhttps://www.blogger.com/profile/02025797880768409599noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-24953030485781995542012-02-07T17:30:38.047-05:002012-02-07T17:30:38.047-05:00Any thoughts on the newly approved once a day anti...Any thoughts on the newly approved once a day anti-coagulant - trade name Xarelto ? Or also any thoughts on the newly approved JAK inhibitor, Jakafi ? Hearing could be useful for PV, ET patients with spleen issues particularly (and not doing well on HU). Trying to see if many have used it yet.Ben Yeohhttps://www.blogger.com/profile/04981835800060325440noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-86820188993140184512011-11-16T11:28:45.801-05:002011-11-16T11:28:45.801-05:00Brilliant clear writing! Thank you for all of us.Brilliant clear writing! Thank you for all of us.Bonnie Evanshttps://www.blogger.com/profile/09493718799661073722noreply@blogger.comtag:blogger.com,1999:blog-32745596.post-24003283052802533342011-04-11T14:16:10.156-05:002011-04-11T14:16:10.156-05:00Hi Mrs. Peed,
I live in Leesburg Va and hav...Hi Mrs. Peed,<br /> I live in Leesburg Va and have had PV for 5 years now.Hydrea and Phlebotomies are routine for me.I am a 46 year old white male.As time passes I feel this PV take a stronger and stronger hold on me.My question is: Are you on Social Security Disability? I wonder if PV qualifies.I have no health insurance. I am really scared of what the future may hold.Wonder if I should go that way? You web site is one of the best on the net!! Any guidance would be helpful 4-11-2011Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32745596.post-63294262186281529842011-04-03T08:19:48.546-05:002011-04-03T08:19:48.546-05:00I loved your article in the MPN Update...I have be...I loved your article in the MPN Update...I have been fighting this disease since 2002...I named my milo..they aren't sure which I have Pv or ET. I have many of the same issues and it was good to see I wasn't alone...I thought I wasn't pushing myself enough...but when I did I would be down for a day or two...and the lack of concentration..I thought it was just me...Love the red, green, yellow light ...I take Hydrea and arglyin for it ....thank you so much for your article...Ginny Harper....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32745596.post-12107633192295400412011-03-01T21:21:07.056-05:002011-03-01T21:21:07.056-05:00Hi Marina! Thank you so much for sharing your no...Hi Marina! Thank you so much for sharing your notes on the conference, for those of us unable to attend. I'm looking forward to reading the rest, after you are well rested (I know how that goes!)<br />Thank you for the time you put into your blog...I have just started looking through it and have already found it to be very helpful and informative, and I can't wait to read more!<br /><br />-JulieAnonymousnoreply@blogger.com