zella
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Post by zella on Apr 19, 2018 1:40:07 GMT
I was so ill yesterday. I've had to use IV fluids 3 days in a row; it's been a long time since I've done that. Woke up today really ill. I'm doing better right now, though still crappy. This chronic illness just won't let go. Every time I start to get hopeful because I've had a few good days, or even a week or so, it comes crashing back, kicks me in the face, and says: "Ha! Did you REALLY think I was done with you?"
There's no cure. Treatment clearly isn't working that well. My rheumatologist wants me to start a new drug, but it's $409 a month, and I just don't think we can pay that. I've looked at the available discounts, and that is the best price I can get. I can't get the $10 a month deal from the manufacturer because it's being used with me for an off-label diagnosis. Even if that drug makes a difference, it will take a couple of months to know if it's working.
I'm not exaggerating when I say that in the less than 3 months between my sister's brain cancer diagnosis and her death, she was healthier and happier than I am. She only had a few days of feeling really bad; I've had hundreds, and no end in sight. I wish it had been me, that I'd got sick and died real fast. Though I wouldn't wish what I go through on my sister, or anyone I even remotely care about. It's hell. I don't want to live like this and I can't get better. I have no control. Today I can't stop crying.
I'm no longer in counseling, and I don't really want to go back. There's no coping skills that are going to make me want to live through bad flares. There's nothing anyone can say that will make this easier. I'm not that strong, I'm not a hero, and I just want to be done.
I just need to talk, and I know you guys are here.
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Post by melrose on Apr 19, 2018 1:57:15 GMT
I wish I knew what to say but I'm not clever with words. I wish you peace and healing. Talk away, I'm listening. HUGS!
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moodyblue
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Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Apr 19, 2018 1:58:00 GMT
For myself or my loved one - if there was a drug available, and my doctor thought it might help? I'd find a way to pay for it. I'd explore every option, including checking to see if there's some kind of compassionate allowance from the drug company.
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Post by scrappintoee on Apr 19, 2018 1:58:47 GMT
I am sooo very sorry for ALL you're dealing with !!!!!  LOTS of ((( hugs )))) !!!! |
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Post by mom on Apr 19, 2018 1:58:53 GMT
zella I am really sorry you are struggling and that the medicine is so expensive. My only advice - and you won't like it - is to consider getting your daughter out of your house so you can free up some funds. Your health is most important here. I really think you need to get back to counseling. You are obviously at your whits end and the counselor could help you cope.
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PrettyInPeank
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Post by PrettyInPeank on Apr 19, 2018 2:06:42 GMT
It's hell. I don't want to live like this and I can't get better. I have no control. Today I can't stop crying. I've suggested this before to you, and I know you said you weren't interested in changing your diet, but if it's that bad I STRONGLY recommend the Autimmune Protocol Diet. I am in an AIP Facebook support group of about 25k members of varying illnesses, and the amount of people who have had considerable life-changing improvements from diet is staggering. Yes, there are no cures to autoimmune diseases, but many, MANY people have gone into remission or have perfect blood work after AIP. I rarely see people who don't improve. And those that don't usually figure out a food acceptable on the diet doesn't work witg them. Like bananas for me. It has personally changed my life. My pain dropped, my inflamation dropped, my mental clarity improved, my energy has sky rocketed, my family got their wife and mother back! I am so, so sorry. I hate that you're this sick. Try it zella. I want you to get better. |
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zella
Pearl Clutcher
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Post by zella on Apr 19, 2018 2:13:20 GMT
PrettyInPeank, I will look up the diet. MCAS, the disease that is causing me all this misery, isn't considered an autoimmune disease. Though I have those too. The normal diet is a low histamine diet, and I've been trying to follow that, not strictly, but paying attention to things on the "don't eat" list, and seeing if they seem to make me ill. So far I've learned pretty much nothing. But I will go check it out. Thank you.
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Post by annabella on Apr 19, 2018 2:14:51 GMT
I'm sorry.
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Post by Delta Dawn on Apr 19, 2018 2:20:14 GMT
My dad said to me once "Do you want to be like this when you are 50?" he was mad at me then. I want to be DEAD by 50 FFS. I wish I were kidding. The good news is I only have 8 more months to enact on it!
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zella
Pearl Clutcher
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Post by zella on Apr 19, 2018 2:26:53 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.
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mvavw
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Jun 25, 2014 20:21:43 GMT
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Post by mvavw on Apr 19, 2018 2:30:13 GMT
I'm so sorry you're feeling so lousy.
I haven't read your previous posts, so please forgive me if my advice doesn't apply, but without knowing that you have MCAS, I was going to suggest considering dietary changes. My mom was completely bedridden with psoriatic arthritis for over a year and finally figured out what foods c were triggering her and she is now like a new person.
When I saw that you updated to say you have MCAS, I want to add that I'm on a Facebook group for Mast cell disorders because the doctor suspects that my dd has one and I see lots of success stories on there with many different approaches to management. (I also see a lot of people who are suffering horribly and reaching out for help). The community seems pretty supportive. If you'd like, I'd be happy to share the group with you so you could see if it would be helpful.
Hugs!
Maria
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zella
Pearl Clutcher
Posts: 3,884
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Post by zella on Apr 19, 2018 2:32:39 GMT
My dad said to me once "Do you want to be like this when you are 50?" he was mad at me then. I want to be DEAD by 50 FFS. I wish I were kidding. The good news is I only have 8 more months to enact on it! I'm 55. I could live like this for 20-30 more years. I don't want that. THAT terrifies me. I've endured thousands of days of feeling awful. I have at least many hundreds almost certainly in my future. I can't bear that thought. Living is so fucking hard. I know you know that. |
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zella
Pearl Clutcher
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Post by zella on Apr 19, 2018 2:36:56 GMT
I'm so sorry you're feeling so lousy. I haven't read your previous posts, so please forgive me if my advice doesn't apply, but without knowing that you have MCAS, I was going to suggest considering dietary changes. My mom was completely bedridden with psoriatic arthritis for over a year and finally figured out what foods c were triggering her and she is now like a new person. When I saw that you updated to say you have MCAS, I want to add that I'm on a Facebook group for Mast cell disorders because the doctor suspects that my dd has one and I see lots of success stories on there with many different approaches to management. (I also see a lot of people who are suffering horribly and reaching out for help). The community seems pretty supportive. If you'd like, I'd be happy to share the group with you so you could see if it would be helpful. Hugs! Maria Hi Maria. I'm on a couple of FB MCAS groups, but please do let me know which one you're on. I'm on a lot of meds for the MCAS. We keep stepping it up, and I get better for a few weeks, then it comes roaring back. I try to eat a modified low histamine diet. I haven't been able to figure out any definite food triggers, though I've tried. There is no logic that I can find for my bad flares. I'm really sorry if your daughter has MCAS; it is a truly wretched disease. |
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PrettyInPeank
Pearl Clutcher
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Post by PrettyInPeank on Apr 19, 2018 2:42:44 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 connected to 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? |
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kate
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Post by kate on Apr 19, 2018 2:43:59 GMT
I have nothing useful for you, but I will nonetheless offer my heartfelt sympathy. I wish I could gift you with a week of feeling good, just to give you a break.
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mvavw
Full Member
Posts: 344
Jun 25, 2014 20:21:43 GMT
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Post by mvavw on Apr 19, 2018 2:46:07 GMT
I'm so sorry you're feeling so lousy. I haven't read your previous posts, so please forgive me if my advice doesn't apply, but without knowing that you have MCAS, I was going to suggest considering dietary changes. My mom was completely bedridden with psoriatic arthritis for over a year and finally figured out what foods c were triggering her and she is now like a new person. When I saw that you updated to say you have MCAS, I want to add that I'm on a Facebook group for Mast cell disorders because the doctor suspects that my dd has one and I see lots of success stories on there with many different approaches to management. (I also see a lot of people who are suffering horribly and reaching out for help). The community seems pretty supportive. If you'd like, I'd be happy to share the group with you so you could see if it would be helpful. Hugs! Maria Hi Maria. I'm on a couple of FB MCAS groups, but please do let me know which one you're on. I'm on a lot of meds for the MCAS. We keep stepping it up, and I get better for a few weeks, then it comes roaring back. I try to eat a modified low histamine diet. I haven't been able to figure out any definite food triggers, though I've tried. There is no logic that I can find for my bad flares. I'm really sorry if your daughter has MCAS; it is a truly wretched disease. I'm going to pm you. |
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Post by Delta Dawn on Apr 19, 2018 3:13:47 GMT
My dad said to me once "Do you want to be like this when you are 50?" he was mad at me then. I want to be DEAD by 50 FFS. I wish I were kidding. The good news is I only have 8 more months to enact on it! I'm 55. I could live like this for 20-30 more years. I don't want that. THAT terrifies me. I've endured thousands of days of feeling awful. I have at least many hundreds almost certainly in my future. I can't bear that thought. Living is so fucking hard. I know you know that. All my friends are taken care of now. They either have husbands or families. One BFF i am kind of worried about but she has 2 brothers and a sister so she will be fine. The kid has a wife so he will be fine. I just have to figure out how to have a heart attack or a stroke now. Strokes run in my family. i have a really solid heart, though. I asked BFF the nurse if I got my heart rate up to 200 would it kill me and she said it would just make me pass out. Faint? That's not the goal here. When your mind goes there is nothing left to live for. I take all my meds every day. Thing is I am not getting better. If anything I am getting worse. My friend who is a GP told me not to let my heart rate get up to 180-200 when I was exercising. I should have asked her if it would kill me, but BFF said it wouldn't. I just want to be done. I so get it. I am sorry I wish I didn't I wish I could just say keep fighting and yet I do know how you feel. You are so sweet Zella. I wish I could give you encouragement. I wake up in the morning thinking goddamn I am still alive. |
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scrappyesq
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You have always been a part of the heist. You're only mad now because you don't like your cut.
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Post by scrappyesq on Apr 19, 2018 3:21:12 GMT
I'm sorry that you're feeling so bad.
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georgiapea
Drama Llama
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Post by georgiapea on Apr 19, 2018 3:49:18 GMT
Oh, ugh, Zella,I always get so worried when you are feeling like this. I so wish there was something that would make things better. I firmly believe people have the right to shuffle off this mortal coil on their own terms but I don't want you to want to do that. You are so young! I want there to be something in your life that you're not willing to walk away from. I'm almost 80 and have the stamina of that sloth on xanax joke. But I'm still buying glass with plans to fuse it all. During the months I spent in bed with my fall related DVT I just wanted to get back to my glass! I so hope you feel better.
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Post by ntsf on Apr 19, 2018 3:51:28 GMT
zella I just want to send you hugs and hugs and prayers and hugs. don't have much to say, but I am thinking of you .. pain SUCKS!!!!!
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Post by elaine on Apr 19, 2018 4:41:54 GMT
((( hugs))). I wish that I could make it better for you.
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Post by georgiee on Apr 19, 2018 5:10:04 GMT
Hugs and prayers. I hope you can feel better.
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Post by jumperhop on Apr 19, 2018 5:17:19 GMT
Sending my love and support.
Jen
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Post by idahopea on Apr 19, 2018 5:42:14 GMT
Thinking of you and sending hope that you can find something that will ease your pain. Please hang in there. We need you here! I'm so sorry you are dealing with this.
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Post by malibou on Apr 19, 2018 6:26:40 GMT
I wish you only good days. I am so sorry life has given you such a wedgie. I will keep you in my warmest and safest thoughts.
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Post by gar on Apr 19, 2018 7:20:08 GMT
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Post by gillyp on Apr 19, 2018 7:56:16 GMT
I am so sorry you are feeling particularly low at the moment and that you get kicked and kicked and kicked again by your illness. I have nothing to suggest but I have heard changes to diet can make an amazing difference. I hope Maria can offer you some ideas. Delta Dawn, please try to not wish those things on yourself.  come and talk whenever you need. |
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Post by gar on Apr 19, 2018 8:26:41 GMT
zella, I forgot to say something to you...I can barely imagine how soul destroying it is to live feeling the way you do. I do hope that some diet changes help, even a little.
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RedSquirrelUK
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Post by RedSquirrelUK on Apr 19, 2018 8:27:43 GMT
zella and Delta Dawn - I have nothing useful to suggest, and only hugs and an ear to offer. But know that we are all here for you to offload to when you need to. I can't imagine how ground down you must feel by all this. 
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Post by Delta Dawn on Apr 19, 2018 11:53:02 GMT
No not at all. I just am hoping to have a heart attack or a stroke. |
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LOTS of ((( hugs )))) !!!!
come and talk whenever you need. 