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Post by leftturnonly on Apr 19, 2018 19:36:55 GMT
It's finally getting to me, so I understand where you're coming from. For the first time in my life, I experienced PTSD and now slight depression. Oh, I am sorry to hear this. I only wish I didn't relate to those feelings as much as I do. There are headaches that don't hit until after big stress is over. I'm not sure how that happens, but I do know that you can't always predict how things are going to look after a tightly coiled rubber band is finally released. That's where you are. So much of your constant stress has been finally resolved (or is continuing to be resolved) and now your brain has to begin to deal with all the emotions that had to be kept in check along the way. It can be a lot to deal with. More pain, just of a different nature.
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zella
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Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 19, 2018 19:45:00 GMT
I’m a bit raw right now as my father is looking at a triple bypass tomorrow morning and we are all worried and scared. But I am going to speak my mind. Elannah - your flip retorts about taking your life are a call for help. You are obviously having a bi-polar event and you need to see your doctor ASAP. Your comments do nothing to help Zella and come across as one-up-manship. Get some help. You have a supportive family and the financial ability to do what you need to get healthy. Take advantage of that and get off this message board and get yourself to the doctor. I say this with compassion but witha side of Compwalla. Zella - My DD has mastocytosis so I understand your frustration. Have you looked into sending your records to specialists at Mayo or another hospital that is on the cutting edge of research into MCAS? You sound like a perfect candidate for some of the new protocols being used to help those suffering with this disease. I have some names of doctors you could contact if you are interested. Hi Judy. It's okay what Ellanah's saying here. We have a history, we have talked from time to time privately, and we understand each other pretty well. So it doesn't bother me. I don't have it in me to help her, though; I am struggling so so much just to get through each hour. I would appreciate the contact info. I have been toying with going to see Dr Afrin in New York (I think that's where he is now). My current doctor is pretty knowledgeable, and I know he reads a lot of studies and such. There's a treatment ladder. Right now I'm on most of the treatments on the first level, and some on the second. The drug I'm not sure I can afford is the next level up. I know hubby will pay for it, but I feel so guilty. Depending on the month and whether or not we've met our deductible, the monthly costs for my meds go from maybe $80 to $600 already. The drug my doctor wants me on is Gleevac; maybe you've heard of it. I just found out that on August 1st I will be on Medicare! I have to read through all the documents, see if I want part B, drug coverage etc., but that is a huge relief. I get it because that's 2 years from when they consider me disabled.
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Deleted
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Jun 3, 2024 0:07:22 GMT
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Post by Deleted on Apr 19, 2018 19:46:57 GMT
It's finally getting to me, so I understand where you're coming from. For the first time in my life, I experienced PTSD and now slight depression. Oh, I am sorry to hear this. I only wish I didn't relate to those feelings as much as I do. There are headaches that don't hit until after big stress is over. I'm not sure how that happens, but I do know that you can't always predict how things are going to look after a tightly coiled rubber band is finally released. That's where you are. So much of your constant stress has been finally resolved (or is continuing to be resolved) and now your brain has to begin to deal with all the emotions that had to be kept in check along the way. It can be a lot to deal with. More pain, just of a different nature. WOW! Exactly!! That deep, dark pain is lifted, but I had a while of the recovery phase, and then I began getting these headaches (like "normal people"), where it was sheer pressure. It frustrated me. Sinus pain? Allergies? I still have 1 more surgery next week (my surgery last month was pushed back because of paperwork--more frustration), and I'll be in pain from that recovery. 6-8 weeks to heal. ALL of that anxiety and frustration could lead to disabling depression. I'm slightly affected, but I'm glad that I was assessed. Thank you for your words!
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Post by slkone on Apr 19, 2018 20:05:48 GMT
Yes, I have been there. I have multiple chronic illnesses from RA to fibro to Hashimoto's. There have been times that I've thought about ending it, but never seriously because I have kids ranging from 16 to 10 and I lost my mom at a young age. Having experienced that loss, I would never foist that upon my own kids. I have had RA for 8+ years, probably longer, and the search for the right medicine seemed to take forever. Simponi ($3000 per month) worked well for 4 years and then last April it just stopped working. I had the hardest time finding another med that works - insurance insisted I try Humira first, which put off my recovery another three months. I finally started Cimzia ($4k/mo) in December and I finally feel like I am doing well again.
No one gets it. No one understands. No one understands that I can feel great one day and like absolute shit the next. I've lost so many friends. I am completely isolated. I grieve for my old life and for my future life as well because nothing will ever be the same again and I won't have the life I've always dreamed I would. I feel like my daughter was cheated of the mom that her brothers had - an active and enthusiastic mom. The burdens on my husband are immense, especially with household chores. My oldest has autism and that is enough stress on a marriage as it is.
People shower love and compassion onto cancer patients, not that I begrudge them that, but people with chronic, painful, debilitating illnesses are simply told, "Oh well, tough luck. You need to change your diet!" which is a form of shaming in many cases. It is exhausting enough to get through day by day, never mind overhauling your entire diet, and if you don't change your diet or make enough changes, then it's your fault you are sick. If you stay in bed all day, you're told you're not getting enough exercise. If you are sad, you are told you need an attitude adjustment because there's a mind-body connection and if maybe you try meditating your pain won't be as bad. It is 100% bullshit.
So, yeah, I've been there. All I can do is give you virtual hugs and let you know that you are not alone. I've been there. I know how you feel.
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zella
Pearl Clutcher
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Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 19, 2018 20:15:54 GMT
PrettyInPeank , I'm looking at the list for the diet. For the first 6-8 weeks the only things I could eat would be some vegetables (can't eat most raw veggies as they cause me gastric distress and I'm picky and don't like that many veggies) some fruit (not supposed to eat berries, which of course are my favorite; I hate all melons so they're out too) I am vegetarian and I will not go back to eating animal products for primarily ethical reasons, but also because I now find them revolting. I'm not supposed to eat cultured products such as yoghurt and kefir because they are on the low histamine diet. I can't eat honey. Why the hell is maple syrup in there? I can't put it on anything on the list. I'm being honest. That is it. I have no idea how to eat only a few fruits and vegetables for my entire intake. Both of these are very unappealing when you're nauseated,which I am virtually every day. And I can't cook most days either. Tell me, honestly, how could I do this? I'd lose a shit ton of weight, that's for sure. What does a breakfast look like? A lunch? I'm asking quite seriously, because I can't comprehend it. I've been through many periods in my life when I could only eat a few items. But those are always bland carbs. I just can't wrap my head around this diet and how I, a picky vegetarian trying to avoid a load of foods already, could do it. For starters many people, even vegetarians, go ahead and eat meat temporarily because it has a tremendous amount of healing properties it has. The studies show eating this way allows your body to take a break from foods that are making you sick and allows you to hit a reset button to heal your gastrointestinal system (a common denominator in the majority of AI diseases). Mast Cell activation could also be histamine intolerance I think, which is a common topic in the AIP group. Join and search MCAS and histamine intolerance. MANY people cure their histamine issues once they get other issues in control through diet. They're all related. Many doctors have no idea what this is, how it works, but they're becoming convinced slowly. Many in the group have doctors who will say "here, take this pill, there's no cure, diet doesn't help" and the other half are prescribed the diet by their doctor specifically based on research and results. What do I have for breakfast? I may slice an apple and saute it in some coconut oil, and add somd cinnamon and a tsp of maple syrup. I may add sausage with pork, salt, maple syrup, ginger and some sage. Or I peel and chop a white sweet potato and pan fry it in bacon drippings with some onion. Join the group. It has been a life-saver!! You will learn a TON. Have you been to a functional MD yet? My husband said the same kinds of things. "So eat meat." I find it repulsive. I cannot eat something I find repulsive. Some can. I can't. I hate coconut oil too, by the way. The taste of it pervades everything you cook in it. I can't justify murdering animals to eat meat because it might make me feel better. I just can't. I was thinking about this diet last night and the only things I can eat that I could come up with are: apples, peaches, mangoes, green beans, onions, zucchini or summer squash, asparagus. And olive oil. Everything else is on one list or the other or I can't personally eat it or don't like it. I really can't see how to do this. No, I've not been to a funtional MD. I've had so many appointments it just hasn't happened yet. And it must be a functional doctor who understands MCAS. So it's a small pool. I'm not trying to be difficult. I am a picky eater and, I believe, a super taster, so things that taste good to most people are disgusting to me. I can't help that.
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Post by crimsoncat05 on Apr 19, 2018 20:31:05 GMT
zella- could you switch to a liquid diet (protein shakes broths, soups), or possibly even a parenteral diet for a period of time, so you get adequate nutrition? or would that still induce the nausea??
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PrettyInPeank
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Post by PrettyInPeank on Apr 19, 2018 20:35:56 GMT
zella you need to join the group! Because I too looked at that list and thought there was nothing to eat. But as soon as I got in the group, I discovered so many foods that I had never considered. Like sweet potato starch noodles, yucca bread, or tapioca pudding for example. And if you absolutely cannot do meat, there are AIP vegetarian groups, too! As for coconut oil, there is also triple filtered coconut oil that even my husband who hates all thibgs coconut doesn't notice! You haveto buy the right oil. Again, it's temporary. Think of the diet like medicine. Often gastro issues are caused by awful foods or antibiotics killing off good flora are what get us into these messes, and you have to get the good back to heal your gut. It heals more than that, too. So many before and afters in this group. Dull, puffy, dark circles are transformed into bright, clear, refreshed faces. And to the poster above saying suggestions of diet change are like shaming, I can understand how you'd feel that way. It's not your fault. I got very defensive and angry when doctors said go do a hobby to be happy, maybe you don't eat healthy enough, go excercise more, maybe you're stressed? Until enough was enough, I had an AWFUL week, and I decided to give diet a 100% all-in try. The worst part is I was significantly worse initially, which is common and your body detoxing. But then it lifted and oh wow! Hello, life! I've missed you! So I'm sure you can imagine how awful and guilty would I feel if I feel like I literally have my life back and I'm almost my old self again, and not share with others who are sick? I feel morally obligated to share. I am not shaming; just sharing a suggestion that changed my life.
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zella
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Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 19, 2018 20:47:30 GMT
zella - could you switch to a liquid diet (protein shakes broths, soups), or possibly even a parenteral diet for a period of time, so you get adequate nutrition? or would that still induce the nausea?? Honestly, I have no idea. I could try a liquid diet. I'm not willing to go down the parenteral route. I've seen many people with MCAS and related diseases have feeding tubes. I can't go there. So far today (1:45) I've sipped ginger ale and water. I'm against parenteral feeding because I've seen how it can drag out illnesses that would otherwise kill, and I'm not interested in that. There are also many problems associated with it, obviously. Right now I have no clue what I'm going to do.
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Judy26
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MOTFY Bitchy Nursemaid
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Jun 25, 2014 23:50:38 GMT
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Post by Judy26 on Apr 19, 2018 20:53:33 GMT
zella, I highly recommend the hematology dept. at Mayo. Dr. Afrin has made changes to his practice that make it difficult to get an appt. with him. I’m sure you have been to this site www.mastcelldisease.com/mcas-doctors/ but if you contact any of these specialists you may be able to have your records sent and they will help connect you to the doctor who has the best chance of helping you. I highly recommend starting with the top specialists and working down rather than working up the levels as you are doing now. While stomach issues could be due to food reactions it is possible that other triggers set off the histamines and they react in your stomach. DD’s triggers are heat, stress and some medications. But it often manifests as stomach issues. Her local allergist has worked hand in hand with her Mayo specialist and she has maybe one or two flare ups a year now. Most of these doctors work together to share info. So if you can connect with any of them you will be in good hands. Don’t let anyone tell you you can’t start at the top. You can and should to get the help you can. I cold called Mayo and got a call back within 2 days and we were on our way to definitive answers.
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Post by christine58 on Apr 19, 2018 20:55:43 GMT
Honestly, I have no idea. I could try a liquid diet. I'm not willing to go down the parenteral route. I've seen many people with MCAS and related diseases have feeding tubes. I can't go there. It has saved scrapmaven
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River
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Jun 26, 2014 15:26:04 GMT
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Post by River on Apr 19, 2018 20:58:07 GMT
zella and Delta Dawn, BIG GIANT HUGS! Zella, I know we've talked before about the nausea. It was one of the most difficult things to endure during my year of sickness and year of recovery. NOTHING helped, not medication, liquid diet, bland diet, nor medication. Seizures was my outside hell that everyone could see and understand, nausea on the other hand was my inside hell that no one could see or understand. Yet, it was what made me want to give up and just let the sickness end me. Nausea is evil!!! Just want to say that I get it! I'm so sorry you have to endure it.
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Post by slkone on Apr 19, 2018 20:59:44 GMT
zella you need to join the group! Because I too looked at that list and thought there was nothing to eat. But as soon as I got in the group, I discovered so many foods that I had never considered. Like sweet potato starch noodles, yucca bread, or tapioca pudding for example. And if you absolutely cannot do meat, there are AIP vegetarian groups, too! As for coconut oil, there is also triple filtered coconut oil that even my husband who hates all thibgs coconut doesn't notice! You haveto buy the right oil. Again, it's temporary. Think of the diet like medicine. Often gastro issues are caused by awful foods or antibiotics killing off good flora are what get us into these messes, and you have to get the good back to heal your gut. It heals more than that, too. So many before and afters in this group. Dull, puffy, dark circles are transformed into bright, clear, refreshed faces. And to the poster above saying suggestions of diet change are like shaming, I can understand how you'd feel that way. It's not your fault. I got very defensive and angry when doctors said go do a hobby to be happy, maybe you don't eat healthy enough, go excercise more, maybe you're stressed? Until enough was enough, I had an AWFUL week, and I decided to give diet a 100% all-in try. The worst part is I was significantly worse initially, which is common and your body detoxing. But then it lifted and oh wow! Hello, life! I've missed you!
So I'm sure you can imagine how awful and guilty would I feel if I feel like I literally have my life back and I'm almost my old self again, and not share with others who are sick? I feel morally obligated to share. I am not shaming; just sharing a suggestion that changed my life. I understand your POV, and that's why I qualified with "in many cases," but it is all in how you approach the issue. If you suggest it gently and empathetically as someone who has seen results first hand, I have no problem with it and welcome the input. However, if you've never been sick a day in your life, but you heard about some miracle diet on Dr. Oz and preach to me that it will cure my incurable illnesses, I'm not going to be happy about it. If you refuse to listen to the person who is suffering when they say they've tried it with no success or are too overwhelmed to even entertain the thought of introducing organ meats to their diet, they're not going to be happy and open to your suggestion. So much of the unsolicited advice I'm offered does nothing but attempt to alleviate the advice giver's discomfort over my illness. They might mean well, but when I am hurting, wanting to vent and I feel sad and angry, I am not explicitly asking for advice. The last thing I want to hear is that my diet is at fault for my illness. My body has already rebelled against me and I'm already feeling lost and confused. What might be well-intentioned comes across as insensitive and dismissive.
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Post by Delta Dawn on Apr 19, 2018 21:00:24 GMT
Wouldn’t it be great to just snap out of it? Or get over it? Or it can’t be that bad? Or you don’t look sick. Right, Zella?
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Post by slkone on Apr 19, 2018 21:11:33 GMT
PrettyInPeank which group are you talking about? Since my bout with c diff, I've been inspired to reset my gut since it has been wiped clean by the illness. Feeling better on Cimzia has also given me the energy to try again.
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PrettyInPeank
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Post by PrettyInPeank on Apr 19, 2018 21:16:26 GMT
I can completely empathize slkone. I actually hung up on my own mother a few times because if she asked how my day was, and I responded with awful, she would often say well maybe you should just think positively and that will help. Or you need to get over some of this. Or why don't you hop up and go shower and go out to dinner? I would try to explain how absolutely fatigued I was, and she just couldn't understand. I had to explain that every time she suggested something like that she was essentially blaming me for feeling sick, which mentally messes with you on top of feeling awful. We would never tell someone with a flu or cancer to hop up or get over it! Off my soap box.
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PrettyInPeank
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Post by PrettyInPeank on Apr 19, 2018 21:18:34 GMT
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PrettyInPeank
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Post by PrettyInPeank on Apr 19, 2018 21:19:28 GMT
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Post by scrapmaven on Apr 19, 2018 21:39:23 GMT
It's cruel enough to be ill, but when it involves the digestive tract it's even worse. I wouldn't wish my disease on anyone, but it's my disease and I have to live w/it, because I don't have a choice. In my case, I should be on TPN for the rest of my life, but I can't, because each port comes w/sepsis. So, I have a J tube. Most of the time, I'm too sick to tolerate the feedings. However, if I could tolerate the feeds, you'd better believe I would do so. It's a matter or life and death. As a nurse, I'm sure you've seen your share of tube issues, but as a patient you have to do whatever it takes to give yourself the best quality of life possible.
My body is slowly breaking down and w/o nutrition things will only get worse. However, I also know that I have much to live for. I have a hopeless disease, am one of the most severe cases on record and yet, I want to live and be happy. I laugh everyday. With friendships. my dh, my sons and my sister I feel an obligation to fight as hard as I can. There's no shame whatsoever in admitting that I have a therapist. This is a lot to process. I'm too young to be so ill and yet I am so ill. You better be damn sure that I'm gonna have a soft place to land each week.
I can do one of two things: give up and end it all or live w/it and try to enjoy those good moments that present themselves. It's a boring life. I hate that I can't sit down and enjoy a meal. What am I gonna do? I'm gonna make each moment count. I'm going to live in the present and take things day to day. I'll try to have fun when I can and I'll try to make a difference in other people's lives. I'm sick, but my mind is strong. I can support people, I can listen and I can make people laugh. Something that I was taught to do is to think of one thing that brought me happiness each day. I do this before I go to sleep. If it's a bad day I find something positive. Maybe my oldest ds skyped something good or maybe a friend had good news.
Do you see my point? I totally understand your illness. I have other diseases, not just motility and I understand how awful it is to live like this. However, I also know that I have been given the gift of life and a wonderful suppport system to help me get through that life. I'm not hopeful, because I've exhausted every treatment possible for my disease, but I am going to do whatever it takes to enjoy those rare moments where I'm well enough to enjoy them.
If you don't like your therapist then get a new one, but get one, because you don't have to suffer like this. You can make your life count, but only you can do that part. Fix what you can fix and let go of what you can't. I truly wish you the best life possible.
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Post by flanz on Apr 19, 2018 21:41:40 GMT
Yes, I have been there. I have multiple chronic illnesses from RA to fibro to Hashimoto's. There have been times that I've thought about ending it, but never seriously because I have kids ranging from 16 to 10 and I lost my mom at a young age. Having experienced that loss, I would never foist that upon my own kids. I have had RA for 8+ years, probably longer, and the search for the right medicine seemed to take forever. Simponi ($3000 per month) worked well for 4 years and then last April it just stopped working. I had the hardest time finding another med that works - insurance insisted I try Humira first, which put off my recovery another three months. I finally started Cimzia ($4k/mo) in December and I finally feel like I am doing well again. No one gets it. No one understands. No one understands that I can feel great one day and like absolute shit the next. I've lost so many friends. I am completely isolated. I grieve for my old life and for my future life as well because nothing will ever be the same again and I won't have the life I've always dreamed I would. I feel like my daughter was cheated of the mom that her brothers had - an active and enthusiastic mom. The burdens on my husband are immense, especially with household chores. My oldest has autism and that is enough stress on a marriage as it is. People shower love and compassion onto cancer patients, not that I begrudge them that, but people with chronic, painful, debilitating illnesses are simply told, "Oh well, tough luck. You need to change your diet!" which is a form of shaming in many cases. It is exhausting enough to get through day by day, never mind overhauling your entire diet, and if you don't change your diet or make enough changes, then it's your fault you are sick. If you stay in bed all day, you're told you're not getting enough exercise. If you are sad, you are told you need an attitude adjustment because there's a mind-body connection and if maybe you try meditating your pain won't be as bad. It is 100% bullshit. So, yeah, I've been there. All I can do is give you virtual hugs and let you know that you are not alone. I've been there. I know how you feel. I agree totally that healthy people just don't understand. I hate feeling unreliable... when a truly debilitating day happens and I'm expected to be at an event or have organized one. People feel let down, like perhaps I'm exaggerating to "get out of" something. I'm sorry that you are dealing with so very much. I, too, feel like my dd suffered when I was so very sick during her adolescence. (((HUGS)))
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Post by flanz on Apr 19, 2018 21:43:17 GMT
HUGE HUGS AND MUCH LOVE TO EACH OF YOU SHARING YOUR PAIN AND CHALLENGES HERE!!!
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inkedup
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Jun 26, 2014 5:00:26 GMT
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Post by inkedup on Apr 19, 2018 21:56:11 GMT
I can't say anything other than I sympathize with you, zella , but I know I can't really 'understand' what your day to day life is like, or what it's like to feel so hopeless. I hope that you can get some information from the Facebook groups or a specialist, that can help you out. I also want to say that I believe we should not compare our experiences to anyone else's experiences- no one's is better, or worse, more or less worthy, whatever you want to say- just different. I do get that. And I understand how someone could feel like they're trying to describe without being actively suicidal. Every person wants to feel that their life has meaning of some sort, but it's up to that individual to make that determination, not some outsider's. I also want to say that the decision to get treatment or not is totally that individual's. We might believe WE would act differently if we were in any given situation, but it's not our life, so we really shouldn't be putting our spin on what any other individual should or shouldn't do or think about themselves and their life. While the decision to seek help is a personal one, I don't understand the handslapping. I think we would be remiss if we ignored literal cries for help and/or unhealthy ideation from one of our members.
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Post by crimsoncat05 on Apr 19, 2018 22:13:50 GMT
I guess I see it differently-- I don't believe any of what was written was literal cries for help or writing from actively suicidal individuals, more of a 'venting' kind of thing. They would have to answer that for themselves, but that's how I read the posts.
And I also think there just isn't any value in comparing the 'badness' of one person's suffering to someone else's, in general. Without knowing everything about what's going on in the person's life, I don't think anyone should be passing judgement on how someone else handles a situation, or determining what's 'healthy vs. unhealthy' for someone else.
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Post by leftturnonly on Apr 19, 2018 22:26:11 GMT
DD’s triggers are heat, stress and some medications. But it often manifests as stomach issues. Coming from a family with allergies, I want to affirm and repeat just how much the stomach and digestive tract can be affected. If you refuse to listen to the person who is suffering when they say they've tried it with no success or are too overwhelmed to even entertain the thought of introducing organ meats to their diet, they're not going to be happy and open to your suggestion. So much of the unsolicited advice I'm offered does nothing but attempt to alleviate the advice giver's discomfort over my illness. They might mean well, but when I am hurting, wanting to vent and I feel sad and angry, I am not explicitly asking for advice. The last thing I want to hear is that my diet is at fault for my illness. My body has already rebelled against me and I'm already feeling lost and confused. What might be well-intentioned comes across as insensitive and dismissive. Wouldn’t it be great to just snap out of it? Or get over it? Or it can’t be that bad? Or you don’t look sick. Right, Zella? I had to explain that every time she suggested something like that she was essentially blaming me for feeling sick, which mentally messes with you on top of feeling awful. I get it. I have felt no other choice but put someone very dear to me in a temporary time-out-of-contact because every single thing said to me (with sincere love) shakes me up so much. There are times when I do envy people with obvious things that are wrong on the outside because then at least other people have something that they can see and relate to. But, when you are trying to deal with pain on the inside - physical, mental or both - you just get dismissed and/or ignored way too often. I can do one of two things: give up and end it all or live w/it and try to enjoy those good moments that present themselves. It's a boring life. I hate that I can't sit down and enjoy a meal. What am I gonna do? I'm gonna make each moment count. I'm going to live in the present and take things day to day. I'll try to have fun when I can and I'll try to make a difference in other people's lives. I'm sick, but my mind is strong. I can support people, I can listen and I can make people laugh. Something that I was taught to do is to think of one thing that brought me happiness each day. I do this before I go to sleep. If it's a bad day I find something positive. Maybe my oldest ds skyped something good or maybe a friend had good news.
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Post by christine58 on Apr 19, 2018 22:30:10 GMT
Something that I was taught to do is to think of one thing that brought me happiness each day. I do this before I go to sleep. If it's a bad day I find something positive. Maybe my oldest ds skyped something good or maybe a friend had good news. I NEED to start and do this...thank you scrapmaven You might not realize it but you bring something good here every single day to many of us. I admire your strength in dealing with your health issues.
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Post by scrapmaven on Apr 19, 2018 22:32:20 GMT
christine58 thank you so very much. Your words mean a lot to me.
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Post by gar on Apr 19, 2018 22:55:55 GMT
scrapmaven, somehow I have been unaware of your huge, challenging health issues - I obviously miss a lot of threads!!. For what it’s worth I always enjoy your posts and now knowing what you deal with whilst remaining so positive sounding, I am even more impressed 🙂
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Post by hop2 on Apr 19, 2018 23:01:57 GMT
scrapmaven Hugs! You have more than once picked me up withbyour wise words and encouragement. So yes, you do make a difference in others lives. And I’m thankful for it. You are one beautiful person and I am lucky to know you
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Post by hop2 on Apr 19, 2018 23:06:06 GMT
Thank you zella & Delta Dawn & scrappinspidey & slkone and others this thread has been very helpful for me to understand. I always read your threads but I frequently have no idea what to say. And maybe this won’t change that but at least I actually think I understand now. Thank you for that.
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Post by MsChiff on Apr 19, 2018 23:28:28 GMT
zella you need to join the group! Because I too looked at that list and thought there was nothing to eat. But as soon as I got in the group, I discovered so many foods that I had never considered. Like sweet potato starch noodles, yucca bread, or tapioca pudding for example. And if you absolutely cannot do meat, there are AIP vegetarian groups, too! As for coconut oil, there is also triple filtered coconut oil that even my husband who hates all thibgs coconut doesn't notice! You haveto buy the right oil. Again, it's temporary. Think of the diet like medicine. Often gastro issues are caused by awful foods or antibiotics killing off good flora are what get us into these messes, and you have to get the good back to heal your gut. It heals more than that, too. So many before and afters in this group. Dull, puffy, dark circles are transformed into bright, clear, refreshed faces. And to the poster above saying suggestions of diet change are like shaming, I can understand how you'd feel that way. It's not your fault. I got very defensive and angry when doctors said go do a hobby to be happy, maybe you don't eat healthy enough, go excercise more, maybe you're stressed? Until enough was enough, I had an AWFUL week, and I decided to give diet a 100% all-in try. The worst part is I was significantly worse initially, which is common and your body detoxing. But then it lifted and oh wow! Hello, life! I've missed you!So I'm sure you can imagine how awful and guilty would I feel if I feel like I literally have my life back and I'm almost my old self again, and not share with others who are sick? I feel morally obligated to share. I am not shaming; just sharing a suggestion that changed my life. How long did the detox last? I've been researching the AIP diet and contemplating trying it but so often when I try something holistic, I get worse (often requiring a trip to the ER) and DH encourages me to quit. If I am honest about what I tried, family and friends tell me to "listen to my doctors and not the people on the internet" so I'm super hesitant to make any changes even though I REALLY want to feel better and rule my life and not have my autoimmune diseases rule my life. FWIW, I totally understand what the people on this thread mean when they say they wish they would die. It's a hard concept to understand unless you've been in a place where every day means more physical pain with no end in sight and trying to get help means you're too often going to see a medical professional that has no idea what is causing your issues, no idea how to help you, no real interest in helping you and instead of trying to help, they either shrug their shoulders, act like you're crazy or refer you to yet another medical professional where the same thing happens. In the meantime, the doctors make their money yet the patient continues to suffer with no sign of relief in sight. And too many friends and family think it's all in your fault or all in your head because if you were really sick, the doctors would be able to cure you. Or they think you should find another doctor as if that doesn't take great effort to try to find someone that's qualified to help you, to get an appointment with them and then to get to the appointment. When pain and hopelessness is what you see happening for the rest of your life, it's hard to keep a positive attitude, especially when you're going through particularly difficult weeks or months. SaveSave
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Post by scrapmaven on Apr 19, 2018 23:42:56 GMT
gar and hop2 , thank you very much for your lovely words. I'm not a crier, but I might be just a tad sniffley right now.
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