Melissa in Australia Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: :grouphug: :grouphug: I hear you. the first few years of Dh being crippled by Multiple Chemical Sensitivities we had all sorts of absolutly weird and wonderful ideas pushed on us- including the one that irritated us the most - we do not have enough faith. we now have just about no friends and left our church because of it 3 Quote Link to comment Share on other sites More sharing options...
Pen Posted April 30, 2015 Share Posted April 30, 2015 ((((hugs)))) I hope today will be better! 1 Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted April 30, 2015 Share Posted April 30, 2015 I'm sorry Jean - the health problems and some people's ignorance are hard to bear. 3 Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: I'm so sorry. Dealing with cronic illness just sucks. And people who suggest you not do meds in favor of "juicing", "no carbs", "just cut out sugar", whatever the trick, are just stupid. There is really no other word for it. They are stupid. I'm all in favor of healthy diets and hitting things on all fronts, but no diet is a cure all. And such suggestions are only painful. :grouphug: 5 Quote Link to comment Share on other sites More sharing options...
*Lulu* Posted April 30, 2015 Share Posted April 30, 2015 (((Jean))) People can be so thoughtlessly hurtful. 1 Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Soror Posted April 30, 2015 Share Posted April 30, 2015 Jean (hugs) I'm so sorry your going through this. It stinks being "special" when that special isn't something the dr's can figure out :(, nobody wants that. People going on like that are just preaching to themselves and boosting their own ego spreading all their "knowledge." :grouphug: I'm so sorry. Dealing with cronic illness just sucks. And people who suggest you not do meds in favor of "juicing", "no carbs", "just cut out sugar", whatever the trick, are just stupid. There is really no other word for it. They are stupid. I'm all in favor of healthy diets and hitting things on all fronts, but no diet is a cure all. And such suggestions are only painful. :grouphug: AMEN! This just makes me so mad I could spit and I'm prone to cursing when it comes up. 4 Quote Link to comment Share on other sites More sharing options...
Night Elf Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: Kicking when someone is down sucks. I hope you're feeling better today. 4 Quote Link to comment Share on other sites More sharing options...
Ethel Mertz Posted April 30, 2015 Share Posted April 30, 2015 Thinking of you, Jean! :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
sunflowerlady Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: So sorry, Jean. More hugs to everyone here dealing with chronic health conditions. :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
goldberry Posted April 30, 2015 Share Posted April 30, 2015 So sorry, Jean. People should guard their opinions extra carefully when it is something they have never experienced. :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted April 30, 2015 Share Posted April 30, 2015 Oh Jean, I am so sorry. I feel your pain. Our daughter has been on iv antibiotics since last May and we are still nowhere. Yes, they are hard on your body and I know people mean well when they suggest things like juicing, EO's, and other "miracle cures" like MMS (which I feel is downright terrifying). But shut up already people! We are doing our best! I hope and pray the new antibiotics help. :grouphug: :grouphug: 3 Quote Link to comment Share on other sites More sharing options...
snickerplum Posted April 30, 2015 Share Posted April 30, 2015 Someone told me that essential oils would cure my daughter's food allergies. She was quite quite insistent, at church no less. The pastor came over to inquire because it seemed as though she was getting angry with me. Thanks for the "help", lady. Another suggested coconut oil would cure her. She didn't seem to mind that dd is allergic to coconut. Apparently that doesn't matter? Some people need to be reminded "if you can't say something nice..." So sorry, Jean. 4 Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted April 30, 2015 Share Posted April 30, 2015 I know, and hugs to you. :grouphug: It's maddening, and very difficult to turn away without being rude. Sometimes I have been rude. :o 1 Quote Link to comment Share on other sites More sharing options...
MercyA Posted April 30, 2015 Share Posted April 30, 2015 Jean, if not for the helpfulness of others, I would never have learned that simply taking a vacation or adopting a child were surefire cures for infertility. :001_rolleyes: Sympathy and :grouphug: . Hope you feel better soon. 5 Quote Link to comment Share on other sites More sharing options...
KrissiK Posted April 30, 2015 Share Posted April 30, 2015 I'm so sorry, Jean! Hugs! People can be so rude! PS: if you find a purple pebble and put it on your tongue, turn around three times under a full moon when Jupiter is in it's third phase, while rubbing ground up mulberry roots all over your body, you will be all better in three days! 7 Quote Link to comment Share on other sites More sharing options...
*Lulu* Posted April 30, 2015 Share Posted April 30, 2015 I'm so sorry, Jean! Hugs! People can be so rude! PS: if you find a purple pebble and put it on your tongue, turn around three times under a full moon when Jupiter is in it's third phase, while rubbing ground up mulberry roots all over your body, you will be all better in three days! Ummm.... That only works on warts, chicken pox, and lactose intolerance. Unless you drink chicken soup made from organic, free-range chicken bones. Then it will cure athletes foot, peanut allergies, and diabetes. :P 7 Quote Link to comment Share on other sites More sharing options...
elfgivas Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: :grouphug: :grouphug: prednisone is both evil and wonderful. i had to take it for 7 months with each pregnancy, plus many other times...... it is not something anyone does if "just juicing" will fix it! sigh..... in the misery loves company department, it was a GI Doctor whose comment reduced me to tears during pregnancy #3. something about how selfish i was and how i had to choose between myself and my baby. he doesn't work for Kaiser anymore...... and my kids have a mom, and are healthy to boot. sheesh, some people...... but at the time, I was almost hysterical. In the end, I came down on the side of making sure it didn't happen to someone else. its been such a long haul for you this time. i hope the newest antibiotic proves to be the one that works! hang in there, ann 4 Quote Link to comment Share on other sites More sharing options...
MBM Posted April 30, 2015 Share Posted April 30, 2015 Ugh. The presumptuous attitude that you simply don't know how harmful the antibiotics are and *just* need to juice would irritate the heck out of me. At times like that I tend to reply back tersely but probably shouldn't. How a person phrases suggestions can make all the difference. I hope you feel better soon, Jean. :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
saw Posted April 30, 2015 Share Posted April 30, 2015 In your place I would definitely be drinking juice. Grape juice. The kind that comes in a fancy bottle with a cork and is decanted into a glass with a stem. Seriously though I'm sorry people are being such goobers to you and I hope you feel better soon. 14 Quote Link to comment Share on other sites More sharing options...
luuknam Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
LucyStoner Posted April 30, 2015 Share Posted April 30, 2015 Ugh. I hate it when people do that. I swear they need to go start their own secluded commune so we don't have to deal with them anymore. I just had a person suggest marijuana for my 11 year old with autism. Crazily enough, not the first time someone made that suggestion. Makes my eye twitch. I just want to tell them to take the oils, the juice, the beachbody marketing and the Jamberry wraps and stick them where the sun don't shine. 6 Quote Link to comment Share on other sites More sharing options...
*Lulu* Posted April 30, 2015 Share Posted April 30, 2015 Ugh. I hate it when people do that. I swear they need to go start their own secluded commune so we don't have to deal with them anymore. I just had a person suggest marijuana for my 11 year old with autism. Crazily enough, not the first time someone made that suggestion. Makes my eye twitch. I just want to tell them to take the oils, the juice, the beachbody marketing and the Jamberry wraps and stick them where the sun don't shine. But what does using it as a suppository cure? 5 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 30, 2015 Share Posted April 30, 2015 I'm sorry, Jean. Hang in there and keep doing the best you can. You have good docs on your side, run with that. The other people... Tune them out. They don't know. Thinking of you, and sending virtual florastor! And hugs. 1 Quote Link to comment Share on other sites More sharing options...
Professormom Posted April 30, 2015 Share Posted April 30, 2015 I've shared this on my tackle thread and a couple of private groups but I'm going to share this in general as well because somehow I'm just not coping with this very well. The doctor put me on antibiotics again. Except for 2 weeks respite I have been on antibiotics and/or prednisone since the middle of January. He searched and found one that he's never put me on before (a hard task since last year I was on 8 different antibiotics and this year have been on 3 different ones). It's a fussy one. I have to time it around certain foods and other meds because there are bad reactions that can happen if I don't. I think I'm going to have to write out a plan. Oh and he is now treating dh with antibiotics and told me to stay far away from him. I cannot chance getting sick with what dh has on top of what I have going on. I am wearing a mask around dh to protect myself from him. (We will pretend to not notice that he should be the one with the mask.) What totally tipped me over the edge though is that I shared that I'm on antibiotics again with my Sparkpeople peeps and someone had the unmitigated gall to suggest that I would be all better if I just turned to juicing (as in fruits and vegetables, not drugs). I am so upset I am crying. These drugs are so hard on my body. My gut is so messed up. I am working so hard to repair what I can with probiotics and prebiotics and good nutrition. My throat has been swelling up almost daily for the last 4 months - which is the reason for the antibiotics. And they have the gall to suggest some juice? (I'm not against juice - I have a favorite green smoothie I make and drink). At least no one has suggested essential oils yet. I have not read any of the responses yet, but I just want to give you :hugs: I have been sick for the past 11 years and no one really knows anything about it, and certain no one has been able to fix it. Sometimes I feel that if I hear one more person tell me to go off sugar, or drink more water, or eat fermented foods, or whatnot, that I will scream, lol. I know they are trying to help. And those things really do work for people who are feeling poorly because they were unhealthy or run down. But there are some illnesses that are a mystery to modern science, and when you have one of them, the road is very long and lonely:-( especially when you have already done the work and made the changes and now you don't even have a piece of cake to make you feel better, lol. It is so nice that people care, of course, but there is an implication that you can somehow fix it if you try hard enough. The Internet does not help this misconception. I just want you to know that you are not alone. I would hug you right now if I could. These weird unknowable illnesses can really force you into a "dark night of the soul". You seem like a caring person who is strong in spirit... Hold onto that. What I have had to realize on my own journey is that, as much as I want them to, people who don't live in my world won't understand, even some of my closest friends. Heck, I wouldn't have understood before I got sick. This has, incidentally, made me much more empathetic toward others. So I have tried to build a thicker skin and take the comments in the way they are likely intended, as a help. Anyway, I rambled a little longer than planned... Your post just touched a sensitive spot with me, and I wanted to encourage you:-) 5 Quote Link to comment Share on other sites More sharing options...
Corraleno Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
TeaTotaler Posted April 30, 2015 Share Posted April 30, 2015 I'm so sorry. :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted April 30, 2015 Share Posted April 30, 2015 :grouphug: :grouphug: :grouphug: Oh Jean I am so sorry you are going through this. I can also relate I have people come up to me and tell me all kinds of things about my Ds's condition. One of my husbands friend told me I must be an incompetent mother as I had not taken my son to the hospital(this was 10 years ago when ds was very sick)..Yes the 5 visits in one week to the dr's was apparently not enough! I don't think I ever yelled at anyone on the phone like I had that day! We are not friends with that person anymore but boy I never forgot that incident and how I felt afterwards! So sorry Jean :grouphug: :grouphug: :grouphug: .I hope and pray you find some relief soon! 2 Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted April 30, 2015 Share Posted April 30, 2015 But what does using it as a suppository cure? The Power of Positive Thinking, I think. 6 Quote Link to comment Share on other sites More sharing options...
*Lulu* Posted April 30, 2015 Share Posted April 30, 2015 The Power of Positive Thinking, I think. You may be right. I had heard it cured diarrhea of the mouth, constipation of the brain, and stupidity. 4 Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted May 1, 2015 Share Posted May 1, 2015 Jean, I am so sorry. I can tell from your posts that you are a truly lovely person and I am so sorry for the longterm suffering you must endure. I deeply admire the way you cope with it. And I'm sorry that someone added to your burden by saying something so utterly stupid . 3 Quote Link to comment Share on other sites More sharing options...
kbutton Posted May 1, 2015 Share Posted May 1, 2015 I'm sorry. I don't do well with antibiotics or prednisone either. I had my first ever UTI last week, and the worst part was the idea that I'd have to take an antiobiotic. So, hugs. Both kinds of drugs give me patches of yeast/fungus on my skin from head to toe, and the prednisone makes me a weepy, grouchy mess. I hope you are able to gain some control over this infection. Hang in there! 2 Quote Link to comment Share on other sites More sharing options...
Random Posted May 1, 2015 Share Posted May 1, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
8circles Posted May 1, 2015 Share Posted May 1, 2015 Oh, Jean. I'm so sorry you're going through so much. The latest infection sounds awful. As am aside, I just saw a FB ad for a webinar about "Biblically-based essential oils". What the heck? 5 Quote Link to comment Share on other sites More sharing options...
LucyStoner Posted May 1, 2015 Share Posted May 1, 2015 Oh, Jean. I'm so sorry you're going through so much. The latest infection sounds awful. As am aside, I just saw a FB ad for a webinar about "Biblically-based essential oils". What the heck? Annointing oils? :) 2 Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted May 1, 2015 Share Posted May 1, 2015 Hang in there Jean. A body in overload won't cope with anything will it? My eldest was given Prednisilone so often during a bad spell to see if it would help (it didn't), that she had to be on it for a full year to wean off. Not happy Jan. This was for a just pubescent, non-coping, screamer. I semi-jokingly told her doctor that if she needed to be on it they had to keep her for that year. His response, "Absolutely not, we can't manage her!". We and our neigbours still bear the mental scars from that year. Would have been worth it if it had helped. Hope your's does, but check to make sure there is not still a ridiculously long wean off period. A maybe take a leaf from that child's book, if you feel like screaming, do so. :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted May 1, 2015 Author Share Posted May 1, 2015 Just a clarification - the prednisone is all done. I'm only on antibiotics now. 1 Quote Link to comment Share on other sites More sharing options...
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