tag:blogger.com,1999:blog-5851425412708638764.post1598437854718289740..comments2023-08-11T04:37:16.576-07:00Comments on Surviving with Systemic Mastocytosis: Live Well..Love Much..Laugh Often: The hardest lesson!Kevinhttp://www.blogger.com/profile/17197927892390298693noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-5851425412708638764.post-69516754754343202672014-12-21T08:13:17.124-08:002014-12-21T08:13:17.124-08:00Hi,
I hope all is well with you. Healthline just...Hi,<br /><br />I hope all is well with you. Healthline just published an infographic detailing the effects of anaphylaxis on the body. This is an interactive chart allowing the reader to pick the side effect they want to learn more about.<br /><br />You can see the overview of the report here: http://www.healthline.com/health/anaphylaxis/effects-on-body<br /><br />Our users have found our guide very useful and I thought it would be a great resource for your page: http://livingwithmastocytosis.blogspot.com/2008/08/hardest-lesson.html<br /><br />I would appreciate it if you could review our request and consider adding this visual representation of the effects of anaphylaxis to your site or sharing it on your social media feeds. <br /><br />Please let me know if you have any questions.<br /><br />All the best,<br />Maggie Danhakl • Assistant Marketing Manager<br /><br />Healthline • The Power of Intelligent Health<br />660 Third Street, San Francisco, CA 94107<br />www.healthline.com | @Healthline | @HealthlineCorp<br /><br />About Us: corp.healthline.commaggie.danhakl@healthline.comnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-18634991802757659882009-05-11T13:17:00.000-07:002009-05-11T13:17:00.000-07:00I am so glad to have found others that have simila...I am so glad to have found others that have similar symptoms and have systemic mastocytosis. I have tried Gleevac-two weeks, and my face and ankles swelled so bad, Dr. took me off. Just had gallbladder removed and Dr. wants to start me on chemo now.<br />I have awful debilitating attacks, wheher I eat or not. Please help me find help.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-20124287373505334432009-03-07T19:40:00.000-08:002009-03-07T19:40:00.000-08:00Hi Kevin--I, also have SM. Until I read this blog ...Hi Kevin--<BR/>I, also have SM. Until I read this blog post, however, I was not sure whether the five times I have passed out were truly "shock" episodes. Because (like you described) all (except one) of my "passing out" episodes have always followed a rapid onset of abdominal cramping which had not yet resulted in a bowel movement. I have always attributed these episodes to a vaso-vagal response. I have also had frequent episodes of angioedema which thankfully has only involved my mouth/throat/airway one time which followed an IV dose of an NSAID drug (prior to SM diagnosis). Typically my episodes of angioedema involve my hands, arms, shoulders, chest, abdomen, lower cervical & thoracic spine, hips, knees, or ankles and sometimes involve all of these areas. While I had suspected that my passing out episodes were really "shocking", after reading your description of how your episodes come on, I am sure that they have been what everyone calls "shocking". I had already told my husband that if I have another one, he should probably consider it to be "shocking".<BR/><BR/>Keep writing, as it is truly helpful for those of us who are just learning to hear about your experiences. <BR/>Blessings to you, <BR/>MaryPilot Mommahttps://www.blogger.com/profile/18146572968318822516noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-49131077891921192232009-02-10T09:28:00.000-08:002009-02-10T09:28:00.000-08:00Amy,I wish I could give you the answers you so dea...Amy,<BR/><BR/>I wish I could give you the answers you so dearly need the only thing I can tell you is different things work for people like us. First thing I did was eliminate anything I thought was causing me to have reactions. I quit drinking, stopped eating out unless I know the food is fresh. Epipen is very important to keep handy. I use epinephrine as a last resort, in my case I've found high potency Benadryl (Diphenhydramine HCI Injection, USP 50 mg/ml) to be my best friend when I’m starting to go into shock. I also have bottled oxygen at home for when I feel short of breath. First and most important advice I can give you is find a doctor who truly cares about you and listens to you, my doctor understood I knew my body better than he did and he listened. How long have you had masto? Have you ever fully gone into anaphylactic shock? The things that have helped me the most is to understand my symptoms, I when I start to cramp in my stomach that if I do not have a bowel movement soon I’m going to be in trouble. If I’m not able to have a bowel movement I prepare, I place my shots next to me, if I start to flush I don’t hesitate by giving myself a shot. For myself I’ve found it’s very hard to determine sometimes when I’m about to have an attack, sometimes I will drive to my local Emergency Room and just sit in the parking lot in case I go into shock. <BR/>PLEASE go ahead and buy an epipen if for no other reason than a sense of security, you never know when you may need it. <BR/>I’ve raised 3 small girls when I was first diagnosed with this ugly illness, I made a 8” x 10” WARNING I HAVE SYSTEMIC MASTOCYTOSIS label and placed it on my front door to my home, on this I described my illness so the EMS would understand how to treat me if I was ever found unconscious upon their arrival. I also placed all my current medications as well as what I’ve probably already done prior to them arriving. I told them to use Benadryl first and epi second. I told them to place me on oxygen immediately. I had my Dr’s name and phone numbers on this as well. I even reduced this and made a wallet size card I carried on me at all times, I cannot tell you how many times I’ve sat on a toilet and handed this card to EMS because I was too weak to speak, this card has saved my life. I will put an image of the card I made on my blog for you and others to see if you like. <BR/>I taught my girls early on how to react if Dad was having an attack, they would call EMS, I typically had them watch TV to try and help with them being scared. Sad to say they have seen allot been through allot. I suggest wearing a medic alert bracelet also, main thing Amy is have a plan of action in place so everyone knows exactly what to do if you have an attack. <BR/>I hope this helps you, take care of yourself.<BR/>KevinKevinhttps://www.blogger.com/profile/17197927892390298693noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-17505001869552045782009-02-10T09:04:00.000-08:002009-02-10T09:04:00.000-08:00Hi Fiona,I'm sorry for not responding before now. ...Hi Fiona,<BR/><BR/>I'm sorry for not responding before now. I'm not the best at writing so please bare with me, some times I rant more than I should. Main thing is don't give up, when I first started shocking it was all the time every week. I now live a pretty good life at the moment, I'm beginning to become to relaxed. I'll make a new post very soon about some new things I've been dealing with that may help someone like your self.<BR/><BR/>Take care,<BR/><BR/>KevinKevinhttps://www.blogger.com/profile/17197927892390298693noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-14888005125414252672009-02-09T11:26:00.000-08:002009-02-09T11:26:00.000-08:00i want to know when i should concerned - when i fe...i want to know when i should concerned - when i feel dizzy & lightheaded, shaky, lips tingling, diaphoretic, flushing, short of breath. can i just suffer through these episodes, which will usually eventually pass, or is there some point where i need to start thinking about the Epipen? <BR/><BR/>What about with my young children, do i need to be sure there is someone else there in case i pass out?Amy CT Shorelinehttps://www.blogger.com/profile/03184738173173668992noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-27418332538854887672008-12-12T14:33:00.000-08:002008-12-12T14:33:00.000-08:00Hi Kevin,Your post (even though it's from August) ...Hi Kevin,<BR/><BR/>Your post (even though it's from August) has reached me on a day when I need to be reached. This rollercoaster of belief/non-belief is incredible...not to mention being a 'shocker'. This phrase made me smile/laugh inside of this situation that isn't all that funny. You're a 'shocker'...hmmm, I guess I am too.<BR/><BR/>I see you haven't posted anything since August...I would encourage you to continue doing so because your experience is invaluable to newbies like me. I've been 'shocking' (monthly, bi-monthly, weekly) for the past year and it's TOTALLY helped me to find you, and your words.<BR/><BR/>Thanks,<BR/>FionaGypsy Princessahttps://www.blogger.com/profile/10895474823958002955noreply@blogger.com