Struggling

[Kat_21]

Hi all! I haven't posted here in a while. I've had quite a bit going on lately. I'm going to try to be on here more, though. It's hard dealing with all of this myself right now.

Recently, my husband was diagnosed with a rare cancer. I have a chronic rare disease and now I'm questioning a lot of things. Why do we both have to have such horrible luck? Is it my fault? Why can't it be me instead?

Having a toddler makes things a lot more complicated and confusing. If I relapse, it could kill me. If my husband doesn't beat this, and even if he does, there's a good chance he might be left without us. Why can't I be stronger?

On top of it all, my husband's family isn't here for him much. His mother, sister and grandparents live in another state. I can understand not physically being here, but things are hard. I'm 22, and I'm struggling. I can't get my husband to eat after chemo. I can't help him when he's getting nauseous or refusing to drink water or move around. They don't even bother calling to talk to him about how it's mentally affecting him. When we tried talking to his mom about it, she blew up. When she found out he wanted to amputate the part with cancer, she said I was telling him to, and that as soon as he does, I'll leave him because he can't work or do the things he used to for me.

Which is ridiculous. We don't have an income right now due to all of our health issues. We barely make rent. If I were to leave him, wouldn't I just do it now? Don't they see I'm doing my best?

It's a lot. I feel stuck. I don't have any people to talk to. My family is helping a lot, but I feel as though we are just a burden. My sister blew up because I said the wrong thing and told me she was "only helping me so I don't feel bad". My family goes all these places without us, places they know I want to take my little boy before things have a chance to get worse. But they hide it from me.

I don't understand why life has to continue getting worse. Why can't we just be normal? Not nuisances to everyone around us, not struggling parents, just a normal family with an average life and a comfortable living situation.

My son is taken care of. And that's all I have right now. Recently I've realized I don't think I can be all he needs. And I hate myself for it.

Sorry for the long post. I needed a safe place to vent.

[Kat_21]

Thank you! I'm in the US. I'll have to check into some of that. I've also been very stressed about trying for assistance due to the stigma around it. I've tried doing it all and I'm at my wits end. I will take your advice and look into it though!

[Kat_21]

Will do lol! Your advice truly helps. I appreciate it.

[Pinkie56]

Feel free to vent all you want. Here's a cyber hug for you. I always try to find the sunshine in any dark day. Some days its really really hard. Stay strong but never shy away from leaning on someone else. Your loved ones are anxious to help they just don't know how. So tell them. They love you. They want to be there for you. BTW this site counts as a loved one. Have you thought about a GoFundMe account? Do you belong to a church? I get a lot of help from Mountain View which is a nonprofit group that specilizes in the mentally different. I also get help from BIANYS (Brain Injury Association of NY State). And I get free testing supplies from the local diabetis (sp?) group. I don't go to church anymore since I went deaf. But I used to get all kinds of support from them. When I broke my foot a bunch of people brought me food & walked my dog. They wanted to clean my house but I'm funny about people touching my stuff.Look for help you will find it. Start with local support groups. Ask your doctor about any local associations you can join.

[Kat_21 in reply to Pinkie56]

I'm so sorry you had to go through what you did, but I'm glad you're coping so well! I try to have a positive outlook as well. It's just recently started feeling too overwhelming to be positive. And I do have a gofundme currently. It was my Mother's idea to set it up and some people have donated and shared it to get awareness. But the stigma of getting money is still there. I will definitely be looking into groups for support etc. Thank you for your comment. It really does help knowing I'm not alone in this and seeing how my family may feel in this situation.

[Pinkie56 in reply to Kat_21]

How so I share your GoFundMe info? Try not to worry about the stigma of accepting money from where ever it comes from. People like to help. Govt agencies are there just for that purpose. Don't think of it as accepting charity. You are enabling people to have a job. Dozens of people work on a single account. With financial aid depts these people would be homeless. Ok that didn't come out right but you get what I mean.

[Pinkie56 in reply to Pinkie56]

OMG! That first line sounds like Yoda. I really need to proofread better before I hit send.

[Kat_21 in reply to Pinkie56]

Lol I can share a link with you if you don't mind? However I do try to stay anonymous on this site. I can send it to you via chat on here though. I'm very thankful ❤

[FOF9303 in reply to Kat_21]

Of course

[FOF9303]

My heart feels for you and your family. It is hard enough getting a serious diagnosis but to be so young and to have a young child on top of it just makes it more disheartening. I love what others have written to you about the organizations that you can check into for help. Please do not be embarrassed by doing this. You need help right now and that is why these organizations were setup for people in your position. Do you have a faith or are you involved in any church? I found that during my darkest and most difficult seasons of my life I relied heavily on my faith. Here is a great article on a wife dealing with her husband's illness. bit.ly/3x8hZaW I hope it gives you encouragement and brings you peace. God Bless.

[Kat_21 in reply to FOF9303]

Thank you. I have decided to look into more support groups and organizations because everyone is right. I need help. I do have faith, I haven't been to church in a while. I got my diagnosis in Dec 2019, discharged in January 2020, and then covid hit. From there I just haven't had an opportunity to go. Especially with both my husband and me having compromised immune systems. Thank you for your words. I will also look at that article. I appreciate you taking the time to comment.

It's very hard. Especially with being young. I'm not as experienced as most, and it all hit very suddenly both times (mine and my husband's diagnosis).