zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 20, 2018 4:18:39 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. I know it will take months to over a year to see Dr Afrin. I looked at the link you gave me. When you called the Mayo clinic, what did you say? What did you ask for? An actual appointment or a long distance consult? Trying to get better is taking too long. I realize that I've been ill off and on (mostly on) for 40 years or so, but the last 4 years have been just terrible, and I can't afford another 4 years trying to be well and failing. I do have good days, but there are too many bad days and they are too erratic.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 20, 2018 4:25:05 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'm really sorry you're going through this. Pretty much everything you say is also my experience of life. I've lost work, being even partially independent, my intelligence, things I love to do, vacations and more. Looking forward, I want to see my younger daughter married, and maybe a mom. But I just don't know if I can muddle through that long. And she has this same disease, so what hope is there for her, too? Thank you for your words. Hugs back to you.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 20, 2018 4:28:59 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 But at what cost, and what kind of life does she have? scrapmaven, could you chime in? I am about quality of life, not quantity. Right now my quality sucks. I don't want many more months or years unless I feel a LOT better and only have these flares occasionally. Less than that is only marking time.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 20, 2018 4:41:29 GMT
scrapmaven you are clearly braver than I am. It's not hard, though, as I'm a terrible coward. I am scared shitless of being ill. I'm not scared of being dead, but of the bs I live through to get there. I have no interest in parenteral feedings. I don't want to be in that position. It's bad enough now, being the sick one, always. To me having an NG tube or a JPEG or such is just one more step down the ladder that I really don't want to be on. I can't speak for anyone else. I am suicidal, yes. But I don't have a plan, and even if I did I'd never tell a medical professional about it. Most suicide methods are hugely unreliable. I've done quite a bit of reading. I have one idea left. So far I haven't done it. I probably never will. But I wish I could. I wish I had the strength to take things into my own hands, say "Family, I love you, I couldn't love you more, and I'm really sorry, but I have to leave you," and then just do it. But I can't.
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Post by crimsoncat05 on Apr 20, 2018 4:45:00 GMT
(((((hugs))))) to you, zella.
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Post by alexa11 on Apr 20, 2018 4:45:22 GMT
I am of no help but wanted to tell you that I hope you find a way to feel better.
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scrappert
Prolific Pea
RefuPea #2956
Posts: 7,792
Location: Milwaukee, WI area
Jul 11, 2014 21:20:09 GMT
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Post by scrappert on Apr 20, 2018 13:43:19 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 Yes, this! scrapmaven
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Post by jenjie on Apr 20, 2018 14:12:50 GMT
zella and Delta Dawn, I have read every word you wrote. My heart hurts for you. Proper words are just not coming. Others have said it better. But I want you to know I’m listening. I care. scrapmaven you have encouraged and blessed me personally many times. To know that it comes from a place of great struggle... I’m so sorry you’re hurting and I’m grateful for your outlook.
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Post by scrapmaven on Apr 20, 2018 14:55:17 GMT
slkone , I read your posts and I just wanted to help you make it better. Of course, that's not possible, but perhaps we can brainstorm a bit and find things that make your daily life more bearable. I relate to some of your post. My kids grew up w/a mom who just kept getting sicker. It's all they've known. We have a routine that works for us. When I'm in the hospital they are not allowed to stop their normal activity and they don't sit vigil. Well, now they're grown and it's a non issue. Anyway, all of my spare energy went to my kids. I drove them to school and made dinner most nights unless I was recovering from a procedure and I've had many. My kids have endured home nursing visits and lots of medical stuff they shouldn't have had to see. YDS gf isn't used to the "sick mom", so she broke down in tears when I was sent back to the hospital right after surgery a couple months ago. We were all reassuring her that this normal and nothing to worry about, but she was so worried. I forget that my family's norm isn't normal. Here's my point: Your kids love you, because you're their mom. They get used to illness and this is their norm. You're not robbing them of anything and as long as you are present and loving then they'll be OK. One thing about having a sick mom is that she's always there for you. Instead of being in bed, I'm out in the family room under my blanket and very present for my family. Yds and I text all the time and we skype, too. He comes to me w/issues and we resolve them. We also laugh like crazy. When he's home we watch our shows together and laugh some more. We have a great relationship and it's closer than ever. Same w/ods. Granted he goes to college, but it's local and he lives here. I think my relationship w/my boys is so open because I have no choice but to be here. KWIM? Your kids love you and they aren't suffering. Give them their lives. Find people to help out when necessary. Other moms have been a lifesaver for me. My friends are the friends of my kid's elementary school friends. You mention that you have a 10 year old. That's a great way to make friends. Yes, I'm the ill one. That means that when I'm too weak to meet my friends for starbucks they come here. So what if I'm in lounge pants and no make-up? I'm not here to impress. It's about that connection and you can have that. I made my friends when my kids were between 9-11, due to various activities that they had. I was the infamous "sick" mom and I hated that, but it was what it was. I really encourage you to find ways to connect, whether it is a local support group or staying during an activity that will include other moms. It's not easy, but those moments of connection are very healing for the soul. Isolation is just the pits. It's a hallmark of illness, too. There are ways to work through it, but that takes energy that is rare and precious. Again, a therapist who works with chronic illness is a blessing. Don't be afraid of therapy. It really can help you enjoy more of your life.
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Post by scrapmaven on Apr 20, 2018 15:03:22 GMT
zella , I can live a long life w/a jtube. That's why I do it. I don't want to die, but I don't want to live like this. That means that I keep fighting and I do whatever it takes to keep up my spirits. Having a feeding tube is daunting at first. It's a huge emotional adjustment and when I had my first jejunostomy I freaked out. I was terrified and had buyers remorse and was quite depressed for a few weeks. Then it just became so routine that I adapted and now I don't really even think about it most of the time. It's just another appendage. I keep the site very clean and take good care of it. Tube changes are easy and the switch itself takes 10 minutes. It's done w/flouroscopy in a cath lab. Normally, I don't even need meds for it, cause it's just not painful. I won't regret being a tubie, but I do miss eating regular meals. I'm a foodie at heart and Peptamin(my formula)isn't the least bit interesting. On the other hand, when I have a procedure that requires drinking liquid death I get to push the stuff through my tube and don't have to drink it:-) Everything comes w/a silver lining.
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Post by flanz on Apr 20, 2018 16:13:42 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 🙂 me too! (((HUGS))) scrapmaven
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peasquared
Drama Llama
Posts: 5,458
Jul 6, 2014 23:59:59 GMT
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Post by peasquared on Apr 20, 2018 16:20:52 GMT
My heart goes out to all of you that are suffering. I pray you are able to find relief, but remember, you are special, you are important and you are needed. Please reach out to us, to others, to doctors, what ever it takes.
(((Hugs)))
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Post by MsChiff on Apr 20, 2018 16:23:46 GMT
zella , I can live a long life w/a jtube. That's why I do it. I don't want to die, but I don't want to live like this. That means that I keep fighting and I do whatever it takes to keep up my spirits. Having a feeding tube is daunting at first. It's a huge emotional adjustment and when I had my first jejunostomy I freaked out. I was terrified and had buyers remorse and was quite depressed for a few weeks. Then it just became so routine that I adapted and now I don't really even think about it most of the time. It's just another appendage. I keep the site very clean and take good care of it. Tube changes are easy and the switch itself takes 10 minutes. It's done w/flouroscopy in a cath lab. Normally, I don't even need meds for it, cause it's just not painful. I won't regret being a tubie, but I do miss eating regular meals. I'm a foodie at heart and Peptamin(my formula)isn't the least bit interesting. On the other hand, when I have a procedure that requires drinking liquid death I get to push the stuff through my tube and don't have to drink it:-) Everything comes w/a silver lining. I've 'seen' you around the pod and here, but for whatever reason I never realized the struggles you deal with. It's so very kind of you to be so uplifting to others that are also struggling. A couple of your posts on this thread in particular have touched my heart and made me a bit teary eyed. Thank you for that. zella, elannah, and other Peas that struggle with hopelessness, whether periodically or long term -- Some things that have helped me pull myself back from feeling hopeless are: 1. Support -- Join any and all FB groups and/or online support groups that in any way pertain to your illness. Not only do most of the people in these groups offer support, they understand what we are going through and can provide suggestions that may help us in our struggles to care for ourselves as well as support and suggestions when family or friends are not being cooperative! They also allow us to vent knowing that they know and understand. 2. Research -- I remind myself that there is so much research that is happening and that research offers us hope for new treatments and possible cures. Get yourself in those research studies whenever possible. A while back 23 and me offered free DNA testing for those with IBD; I signed up, got tested and complete research questionnaires for them when they are available. I've also participated in research through my GI's office. Some research studies pay you, but I would do it for free because I believe it helps find better treatments/cures for our diseases! 3. Faith -- If you're faithful, turn to your faith for strength. Look for online groups to help you in your walk, regardless of which faith you are. 4. Self care -- Self care is always important but it's especially important when we are feeling hopeless. If you can afford it, splurge on something to feed your soul whether it be spending time with friends, getting your hair or nails done, getting a massage or whatever. If you're homebound, look into getting services at home. Have groceries delivered, have someone do your laundry, get your home cleaned if you're not up to doing them yourself. If there's no grocery delivery available and you may be able to order your groceries online and have a family or friend pick them up. Try not to feel guilty for spending time or resources to help yourself feel better. While this may help you feel better for a time, there very likely will still be times that we feel hopeless. I allow myself to wallow for a bit and then start working to banish (or push back) the hopelessness. SaveSave
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Deleted
Posts: 0
May 20, 2024 10:35:33 GMT
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Post by Deleted on Apr 20, 2018 16:29:54 GMT
zella , I can live a long life w/a jtube. That's why I do it. I don't want to die, but I don't want to live like this. That means that I keep fighting and I do whatever it takes to keep up my spirits. Having a feeding tube is daunting at first. It's a huge emotional adjustment and when I had my first jejunostomy I freaked out. I was terrified and had buyers remorse and was quite depressed for a few weeks. Then it just became so routine that I adapted and now I don't really even think about it most of the time. It's just another appendage. I keep the site very clean and take good care of it. Tube changes are easy and the switch itself takes 10 minutes. It's done w/flouroscopy in a cath lab. Normally, I don't even need meds for it, cause it's just not painful. I won't regret being a tubie, but I do miss eating regular meals. I'm a foodie at heart and Peptamin(my formula)isn't the least bit interesting. On the other hand, when I have a procedure that requires drinking liquid death I get to push the stuff through my tube and don't have to drink it:-) Everything comes w/a silver lining. Thank you for sharing your experience scrapmavenThe part I've bolded I understand very well
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 20, 2018 22:31:18 GMT
Scrapmaven, you are a wonder!
I'm just so disappointed by my life. Very little is how I hoped it would be. And realistically I doubt it'll ever be what I hope moving forward. My illness is just one part of that.
I got 2 new meds. One for the nausea, one for the anxiety. I'm pretty much refusing to leave my room. I'm trying not to eat (though I caved and had 6 saltines). I have no idea how to move forward. I don't want to start acting like things are okay, and go back to doing "normal" stuff, because I know that I'll just get kicked back to this place again, this place of feeling so ill and so depressed.
All I want to do is sleep. The worst that happens then are occasional bad dreams.
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Post by friendly on Apr 20, 2018 23:11:12 GMT
Scrapmaven, you are a wonder! I'm just so disappointed by my life. Very little is how I hoped it would be. And realistically I doubt it'll ever be what I hope moving forward. My illness is just one part of that. I got 2 new meds. One for the nausea, one for the anxiety. I'm pretty much refusing to leave my room. I'm trying not to eat (though I caved and had 6 saltines). I have no idea how to move forward. I don't want to start acting like things are okay, and go back to doing "normal" stuff, because I know that I'll just get kicked back to this place again, this place of feeling so ill and so depressed. All I want to do is sleep. The worst that happens then are occasional bad dreams. You need to go back to therapy. Refusing to leave your room isn't normal. If you don't want to do it for yourself do it for your family. They suffer when you suffer.
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Post by scrapmaven on Apr 20, 2018 23:27:19 GMT
Zella, I say this from the deepest parts of my heart. You absolutely need therapy as soon as possible. Your suffering can be reduced, but you can't do it by staying in your room and giving up. Even at its worst you can find reasons to live, but more positive things can happen if you just get outside help. Speaking outside, you need to sit outside in the shade each day and breath fresh air. You need to laugh and have fun . It won't happen all the time, but it can happen. There are many reasons to smile, but you won't find them on your own. A great therapist will help you help yourself. Nothing will cure you. Nothing will magically give you energy. Your life is about making the most out fo the few good moments that you can have. It sucks a lot. But it is not hopeless and it is not worth dying. You'll destroy your family if you commit suicide and you'll destroy your chance at happiness. Please get help immediately. This bedridden pea is telling you that nothing is worth dying for. Nothing. You have a board full of peas who care about you and this pea in particular knows that it's possible to be happy even when you're horribly ill.
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Post by donna on Apr 20, 2018 23:51:56 GMT
zella and others feeling the same way, I wish I could give you a big hug. I had a time when I had the fistula that I felt the same way. I was in constant pain and three surgeries had not fixed the situation. Most people have no idea I felt so low and hopeless. I am ashamed that I wanted to die then. I had so much to live for. Now I am fighting for my life with everything I have in me. I have bad days, but even on those bad days I have found a way to find some joy. I hope I can continue doing this as my cancer progresses because it is a very painful cancer. I want my family to know I fought to be here for them. I want my students to know life can be really hard but joyful as well. Please do whatever you need to do to get past this. Your family needs you even if you can’t do the things you used to do.
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moodyblue
Drama Llama
Posts: 6,179
Location: Western Illinois
Site Supporter
Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Apr 21, 2018 0:44:43 GMT
Zella, you said you want your younger daughter to go on to marry and maybe have a child, but that she also has this same disease.
What kind of message are you sending her about her future if you refuse to come out of your room, are trying not to eat, and otherwise not getting the help you need? Do you want her to believe that there is no hope for her? That she might as well give up now because this is what she faces? And your granddaughter? What if she were to have this condition, or something else?
I know you have lots of food issues, and eating is problematic. And location and distance are issues for you when getting treatment. Don't let those stop you. If there's a med that could help, find a way to get it. Maybe your daughter and husband need to contribute more to the household, get a second job to do so. Something. Maybe your daughter could do some of the research for you, to help you out. Maybe a diet change could help. Maybe the right therapist can help you. No guarantees, but there's nothing much in life that comes with a real guarantee.
I hate to see you, or anyone else, being so low that you don't want to live. Do I totally understand it? Probably not. I've watched others choose to stop treatment when they were not going to ever get better. But I also have to live with the hope that there are treatments and therapies being developed all the time - one of those that doesn't exist yet might be what could save my husband from dying of cancer, or be the miracle drug that helps you live a healthier life.
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inkedup
Pearl Clutcher
Posts: 4,837
Jun 26, 2014 5:00:26 GMT
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Post by inkedup on Apr 21, 2018 0:45:52 GMT
zella and others feeling the same way, I wish I could give you a big hug. I had a time when I had the fistula that I felt the same way. I was in constant pain and three surgeries had not fixed the situation. Most people have no idea I felt so low and hopeless. I am ashamed that I wanted to die then. I had so much to live for. Now I am fighting for my life with everything I have in me. I have bad days, but even on those bad days I have found a way to find some joy. I hope I can continue doing this as my cancer progresses because it is a very painful cancer. I want my family to know I fought to be here for them. I want my students to know life can be really hard but joyful as well. Please do whatever you need to do to get past this. Your family needs you even if you can’t do the things you used to do. Donna, you are always such an uplifting, loving person here. I've always hoped my children would encounter teachers with your passion and care for your students. I think of you often ❤
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 21, 2018 0:52:54 GMT
I can go back to my old counselor. But I don't want to, not right now.
I feel physically better today. But I don't want to do anything "normal" because I feel like none of it is real. What's real is me hooked up to IV fluids feeling like death, trying to figure out what if any medication I haven't yet taken that might ease this feeling. I feel that's what is real. And every time I get my hopes up they get dashed again and I just feel stupid for thinking I could possibly be okay.
I don't know if that will make sense to anyone.
Hubby and I own timeshare points. We've used them to go to Maui 3 or 4 times, to St Maarten, to Orlando, and to Vegas. Now he's going to sell our points because I am never well enough to commit to going on vacation. July is our 20th anniversary, and I really, really wanted to go somewhere special. Without our points that probably won't happen. The anticipatory stress of travel has a tendency to make me sick, plus I think being around many different perfumes and scents in airports and on planes, plus the change in elevation, I suspect it all plays into my frequently feeling really ill when I'm supposed to fly. I've tried numerous sedatives and such, but no luck.
I don't want to live the rest of my life in my house, but I don't have faith that I can do any better than that. I'm not thrilled with my life as it is. Even if this stupid disease went away for good I wouldn't have a life I'm excited to live. I have nothing on the horizon to look forward to. I can't follow my few passions. My DH is getting short-tempered and irritable with me, and I'm just a burden to him. We never do anything together other than watch the occasional show on tv. We haven't even been out to eat in months.
My daughters and hubby all say they love me, but I have so little to give.
I admire Donna and Scrapmaven and many others here who are fighting terrible illnesses with such a great attitude; that just isn't me. It just isn't.
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Post by peasapie on Apr 21, 2018 1:01:29 GMT
Zella I don't have any good words, but I wanted to say that I have some autoimmune (hashimotos and rheumatoid arthritis) and my son also has autoimmune. His struggles are worse than mine, as the psoriasis and psoriatic arthritis, as well as stomach issues, are constantly causing him distress. I know this is of no use, but wanted you to know you aren't alone. I hope you are able to get something that will help you feel better.
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azredhead
Drama Llama
Posts: 5,755
Jun 25, 2014 22:49:18 GMT
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Post by azredhead on Apr 21, 2018 2:09:59 GMT
I think this place is the best! So many of us have walked some crazy paths and still are! I hope you take them to heart.
I too know what it's like to live with life long illenesses. And more than just one. My heart was only the beginning. I've shared a lot of it on here, but most of the struggle I have not. Right now the most painful isn't medical for me right now it's for the loss of my mom. That many of you know. You say that you would like to end,that someitmes it seems the burden, the guilt the everything is worse that thinking of what would happen if you do end it . Let me just tell you it rocks those closest too you. Nothing is ever the same. You talk about guilt. Let me talk to you about guilt. The guilt that your family feels is astronomical! Maybe there was more they could have done, maybe they could understand what it's like to not have things 'normal'. My mom would say this before she did decide to end it. We're still not sure it was a full 'iintent suicide'. She was heavily intoxicated when she fell. There were many factors going on at the time. But I've been working through a lot of the guilt in counseling. among other things. But it's comin close to destroyin a lot of my family and relationships. Between blame and guilt. Then for me there is the 'survivals guilt. I should have been dead so many times I can't count them on my fingers. I have 9 lives and spent them..From Menigitits, to septic ... heart attack andmore.. I have my own medical book. And yet my mom takes a fall down five stairs and hits the floor so hard she was gone like that.. my FIL went to sleep with the remote still in his hand. My other uncle was 'accidentel suicide'. if that's a thing. He had been a drug addict the last few years, he got clean was doing good but then got sick took some of the medication they gave him and was dead two days later. He was younger than my mom. we were super close all growing up. That one still tares me up. One of our dearest family friend and his wife lost two kids in a car accident, wrong way driver killed them instantly. Left twins behind. A year later the mom (one of my moms dearest friends) was diagnosed with stage5 lung cancer (never smoked a day in her life.. She had 6mo maybeMy mom mad a special trip to see her when I got menigitis. She came down to help Dh. and see lllana. She died (llana) a month after that. The part that pissed me of the most was she made me fight to stay a live all of those times from the time i was born and she was just gonna end it. It still pisses me off.. I had just got out of isolation. They had me in isolation for a week. When I was septic it was three weeks I looked and felt 9mo preg. They were ready to put the tubes in.I coded twice. And I've been on a dead pace maker battery for at least 6mo. They just replaced it yesterday And I'm still here... We've lost peas and peas have lost family... etc..Often I wonder why? But then I do see my family especially my Dh and i know why. It's different for anybody. What keeps you here is up to you. I knew when my mom had not wanted to live for her I see the devestation of the loss on my step dad. It's their 3rd marrieage for both but they've been together 31yrs. He's hangin on by the thread.. he's not in the best health either. In fact the sick part of the whole thing is he was sicker than my mom. My mom struggled with her GI and kidneys all my life. But she always had to 'fix someone else'. I was usually her fix.. but in Dec she was really suicidal and such.. I was loosing my dog to Lymns disease. She wanted to come here for Cmas. Her and my step dad were having issuses as well but it wasn't anythng they coldn't work through. I told her she couldn't come here. It was not good here and I didn't want her driving. 1. by herself 2 in her condition but my step dad still kept calling to see if she'd shown up on my door step. Apparently my oldest brother is not speaking to me because I didn't let her come here. He blames me. Even though I had begging him and my step dad for 6mo to get her help. Especially with the drinking. That was just making things worse. My dad #2 had even asked me abou it at Easter and we had a good talk about it.. Once I explained more what was happeneing to us at the time and with my mom he saw my side of it. He said he think me and my brother can work through it, but right now the fact taht he's (my brother) is blaming me makes to pissed to do anything about it right now. And he's a NURSE in a ped ICU for crap sake! Anyway I knew when she didn't want to talk about the family anymore she was checking out. I hope that you understand at least that no matter how you think about your condition the affects it leaves behind if you did go is FAR worse. I'm not sure if I'm making anysense.. I've shared a lot on here but it doesn't scratch the surface and I also don't want to or even hope it doesn't come across that I can compare it with what you're going through or anyone else. Everybody has their own story. You do have one - I promise. YOU matter more than you think you do.. There are ALWAYS options. I've also started my journal again even if its just writing how I feel that day.. The pain and physical stuff can really screw with your heads - I think we've all learned that. Every day I get up and say 'today i did ok' or I didn't do ok and that's okay too. I take the good days as they come. It's ok to check out every so often too. But when you're ready to check out totally I hope you reach out and keep reaching out. I hope I am not just rambling and not makng any sense.. (cause I can blame that on the meds) I Just know that it matters it matters to a lot of all and most all whether you think it does or not to your family.. Even grief does that. I know you've talked a lot about the loss of your sister and sometimes those losses it doesn't get easier but we have help. And yes Mayo is AWesOME! I think we've talked about that before. There are lots of Dr's there.. I started there, they've kinda saved me, but now I'm back at the childrens hospital because I'm pediatric cardio. It's a different ball of wax.
I am slways in awe of the peas. And the kindness and we're theyve been. There's been a few times I've taken a break but even with the political and cattyness that goes on I learned theres a lot of walks of life and that's part of what makes a community. There's many that care about you and want to help you. Even when you're in the bottom of the barrel, someone else has been there before. I hope that helps.. Many hugs and more and i hope the experience here can also guide you and bring you some much needed comfort when it seems no one else can! Just keep talking!
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Post by jenjie on Apr 21, 2018 2:23:40 GMT
azredhead I am so, so sorry for your suffering, your loss, the toll your mother’s death is taking on you. Thank you for sharing those wounded places so Zella can see the price her family would pay. I know she loves them very much.
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azredhead
Drama Llama
Posts: 5,755
Jun 25, 2014 22:49:18 GMT
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Post by azredhead on Apr 21, 2018 2:58:08 GMT
azredhead I am so, so sorry for your suffering, your loss, the toll your mother’s death is taking on you. Thank you for sharing those wounded places so Zella can see the price her family would pay. I know she loves them very much. ohh that means a lot really and I HOPE it doesn't come across to raw. I hope it helps Zella or anyone. It's just not the toll on me but my whole family and alot if has really surprised me. It does different things to people. And then it's funny because DH's parents were both tragic and horrible on their own so it just depends on family dymnaics, but it forever changes relationships. I don't know if they say it's easier if you expect it or not it doesn't really matter in that regard.. as to a life long or even short term illness and you know.. and so many have been great from the grief aspect. Even Zella i know you talk so much about your sister. I still haven't gotten to where I can look pictures yet? Does that help you at all? For me it's still to painful. I'm sure it will come.. It's only been a year here but I know time doesn't seem to affect death or the aftermath.. Even if she didn't intend a full suicide we wil NEVER have answers either.. I hope for those that do contempllate or even have thoughts of ending it all I can hope that the realize the aftermath is so much harder. It keeps me going on the really hard days. whatever your family means to you ..
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Post by jenjie on Apr 21, 2018 3:15:41 GMT
azredhead I am so, so sorry for your suffering, your loss, the toll your mother’s death is taking on you. Thank you for sharing those wounded places so Zella can see the price her family would pay. I know she loves them very much. ohh that means a lot really and I HOPE it doesn't come across to raw. I hope it helps Zella or anyone. It's just not the toll on me but my whole family and alot if has really surprised me. It does different things to people. And then it's funny because DH's parents were both tragic and horrible on their own so it just depends on family dymnaics, but it forever changes relationships. I don't know if they say it's easier if you expect it or not it doesn't really matter in that regard.. as to a life long or even short term illness and you know.. and so many have been great from the grief aspect. Even Zella i know you talk so much about your sister. I still haven't gotten to where I can look pictures yet? Does that help you at all? For me it's still to painful. I'm sure it will come.. It's only been a year here but I know time doesn't seem to affect death or the aftermath.. Even if she didn't intend a full suicide we wil NEVER have answers either.. I hope for those that do contempllate or even have thoughts of ending it all I can hope that the realize the aftermath is so much harder. It keeps me going on the really hard days. whatever your family means to you .. I know it cost you to share all that. It took a chunk out of you. There are times I’m ok with sharing and times I’m not. But like you did here, the possibility of helping someone else outweighs the pain and we make the choice to try to help in spite of it. My situation is totally different than yours with your mom, but even with someone who didn’t take their own life, we each respond differently. I’m ok with photos and I like to see them. But I don’t dwell on them. Mil has made her house a shrine. I didn’t realize it but sil pointed out there are photos of Fred everywhere you look. And then I talked to someone just in the past two weeks who cries every time they see a picture of their loved one who died. I’ve talked about grief share quite a bit here. It was recommended to me by a pea. It might be helpful for you to look into. They do address issues regarding grieving the loss of a loved one to suicide.
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azredhead
Drama Llama
Posts: 5,755
Jun 25, 2014 22:49:18 GMT
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Post by azredhead on Apr 21, 2018 3:37:27 GMT
jenjie you're story has warmed my heart over and over again.. I think of you often and have been great ful for your wisdom and friendship! It gets exhausting if I start thinking about the heavy stuff.. like that but I hope it helps. it's funny you mention the shrine part. My mom didn't have a funeral, we all grew up mormom/religous, she still held on to the basic beliefs, many of us do, only 3 of us still active, but she DID not want a funeral. But in the process of eveyrthing and everyone at the house my sister (she's my youngest hippie) sister started making this shrine around the tv. She kinda went over board but nobody said anything. we did a wake for her at a little community place and they did the shrine there too. I thought it was alitle wierd The wake it self really worked out. Since we're all soo different. Photos were a big part of our family. They did have a wall photo in their living room, but my step dad wanted all the pics down before we all left. He didn't want any pics. Not even the books and there a lot!1 He kept one canvas pic that he had of my mom his fav of her when they were Scotland the summer before, and he keeps that in his office on is wall. It's the only pic left in the house. It's bothered some of my siblings and me sort of.. but it's not a hill I'm willng to die on in that aspect.. My sister took her shrine with her and created it where she lives. I guess it's different..She'll post pics of it every so often. Anyway pics are good i can do pics of everyone else, but it's actually rare to find one of me and her together except when i was tiny. AndI I was a scrapbooker! I thought that would really help with things but not yet.. I hope Zella you have something that you can turn nto.. I've also started coloring. I have an app , I used to do the paper and markers and I wanna go back to that when I recover from this recent surgery.I use it's actually called ColorTherapy and I can't tell how much I love that especially on the hard days! Some days I can just color!
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Post by jenjie on Apr 21, 2018 4:29:45 GMT
@az redhead 😍. That so sorry about your stepdad and the pictures of your mom. People respond so differently. zella I think the coloring book is a great idea. If the adult ones are too complex, try a Childrens coloring book. Someone sent me an adult coloring book. I did one page and it was the opposite of relaxing. Trying to come up with colors paralyzed me! Crazy isn’t it?
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azredhead
Drama Llama
Posts: 5,755
Jun 25, 2014 22:49:18 GMT
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Post by azredhead on Apr 21, 2018 4:50:45 GMT
you would like the app to, you can zoom in out colors. they do fun callenges, which i love it does have social part but you dont have to do that it you dont.Ive tried lots of coloring aps but that ones the best! the pages are so fun!
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Apr 21, 2018 18:42:08 GMT
Zella, I say this from the deepest parts of my heart. You absolutely need therapy as soon as possible. Your suffering can be reduced, but you can't do it by staying in your room and giving up. Even at its worst you can find reasons to live, but more positive things can happen if you just get outside help. Speaking outside, you need to sit outside in the shade each day and breath fresh air. You need to laugh and have fun . It won't happen all the time, but it can happen. There are many reasons to smile, but you won't find them on your own. A great therapist will help you help yourself. Nothing will cure you. Nothing will magically give you energy. Your life is about making the most out fo the few good moments that you can have. It sucks a lot. But it is not hopeless and it is not worth dying. You'll destroy your family if you commit suicide and you'll destroy your chance at happiness. Please get help immediately. This bedridden pea is telling you that nothing is worth dying for. Nothing. You have a board full of peas who care about you and this pea in particular knows that it's possible to be happy even when you're horribly ill. I hear you. I really do. I had a better day yesterday. I'm just not good at living when I'm ill. Actually I'm not terribly good at living, period. I try to hang on for my family. So far I have. Suicide is really difficult which is why I'm still around. There are people who think that life of any quality is still worth living; and there are people who think that life that isn't the quality you need isn't worth it. I'm of the latter way of thinking obviously. My reason for not wanting to go back to therapy right now is money. It's expensive. And I feel guilty spending the money when it doesn't help me permanently. I get much better for a while, but as soon as my physical illness gets really bad, I'm back to being suicidal. I wish I could have your attitude, scrapmaven, but that's not who I am. I've never been that way.
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