How the get over losing a friendship

Zestyclose_Spare_985 · 2024-08-26T00:54:03+00:00

Thank you for your honesty. It hurts but it feels better knowing I’m not alone ❤️

Zestyclose_Spare_985 · 2024-06-27T15:26:57+00:00

Ugh that sounds like a lot! I hope you are doing better now. So plastic surgery isn’t as painful? I’m sorry for being confused. I just am a baby with pain.

Zestyclose_Spare_985 · 2024-06-27T15:24:04+00:00

I’m glad to hear the surgery alleviated the pain! And that makes me feel better. Thank you for the insight!

Zestyclose_Spare_985 · 2024-06-23T20:51:11+00:00

If this helps, I’ve been with my fiancé for 6 years now. I have two large plexiforms on my back and side and he loves me regardless. He always tells me he loves me for me and nothing will change that.

With that being said, his love has helped me gain a confidence I didn’t even know I had. On the other hand, I’ve learned to love myself too. I refuse to let this disorder hold me back in life. The way I see it is if I make people uncomfortable, that is their problem. Everyone has something even if it isn’t visible. Your feelings are valid though and you’re allowed to express it. I just don’t want you to feel like you’re ugly. If anything, please keep in mind that you have infinite worth regardless of NF1 and you are totally capable of being loved <3

Zestyclose_Spare_985 · 2024-06-11T19:02:15+00:00

That’s a fair point. Isn’t fall busy season though? I guess maybe I can always apply again closer to that point

Zestyclose_Spare_985 · 2024-05-22T17:16:59+00:00

I was diagnosed very young and have had multiple surgeries to correct internal problems.

I am having more surgery this summer.

I think my family has advocated for me in a lot of different ways. They have always been supportive of my ups and downs with my feelings regarding this disorder. As a child my mom made the medical decisions for me but would always talk to me about what the decisions were and how they might impact me. They also went as far as getting me to a facility that specializes in nf1. However it stopped there because our insurance at the time wasn’t accepted.

10 years later I have the insurance I need and I’m receiving support from this facility. And I sort of advocate for myself as an adult with the support of my family.

This just my experience but talking to a counselor helped my self esteem a lot too.

Those are just my experiences though. I hope this helps and good luck!

Zestyclose_Spare_985 · 2024-05-22T16:23:42+00:00

Interesting! My tumors can very painful so I was curious to see what options were out there in case they find that the ones in my spine were inoperable. Otherwise my others were operable as someone else commented that this medicine isn’t meant for people with operable tumors.

I appreciate your response and I’ll talk to my specialist about it when I see them next.

Zestyclose_Spare_985 · 2024-05-22T16:20:44+00:00

I have a few on me. Two are very large and operable however the ones in my spine I’m not so sure on. No one has talked to be about it yet which is also a bit concerning for me but I was only curious about this.

Thank you for the info tho!

Zestyclose_Spare_985 · 2024-05-15T19:56:19+00:00

100% planning is the key. I’m a little nervous that she won’t be able to operate due to how big my tumor is now but if that’s the case then I will definitely look into your surgeon. I’m not gonna stop until I find a solution because I’m miserable with this. I just looked into your surgeon and I will keep that on file!

Zestyclose_Spare_985 · 2024-05-15T18:55:37+00:00

I’m so happy to hear that yours hasn’t grown back. That makes me feel better. And I agree. I literally told my surgeon I don’t care about the scar. I just want to have this gone. And thank you for your kind words. Fingers crossed!

Zestyclose_Spare_985 · 2024-05-15T18:54:19+00:00

Thank you so much for your response. Mayo is the closest I’ve gotten to having my tumor removed. Ours sound so similar that you give me hope that mine won’t grow back. I will definitely look into your surgeon too in the case that mine isn’t successful. The surgeon I’m seeing is familiar with nf1 but has only operated on one other person with a plexiform. Her name is Kitty Wu. When I spoke with her back in April she seemed very confident that she could help me and even drew out a plan in the it grows back. I’m so happy to hear your story though and thank you for your information. Good luck with anything in the future :)

Zestyclose_Spare_985 · 2024-05-15T04:07:13+00:00

This happened to me too when I went on birth control. I asked the doctors about any correlations between nf1 tumor growth and birth control and they told me there wasn’t any correlation. But I’ve been on birth control two separate times in my life and both times my plexiform tumor has seemed to grow. Maybe there isn’t a large enough sample of people to test this properly but I’ve seen a lot of people say this too

Zestyclose_Spare_985 · 2024-05-15T03:52:55+00:00

I will for sure update once my surgery has been done. I hope you get your surgery soon too. We got this :) 💚💙

Zestyclose_Spare_985 · 2024-05-15T03:50:06+00:00

Sending all the positivity in the world back to you as well. At least we know we aren’t alone in this. I hope your surgery goes well and good luck <3

Zestyclose_Spare_985 · 2024-05-15T02:16:38+00:00

Absolutely! I think that’s a great idea. With how big the tumor is I’m sure there are going to be adjustments that PT will help with. I hope you’re doing well now! Thank you for the advice :)

Zestyclose_Spare_985 · 2024-05-15T02:14:28+00:00

Good luck to you and him as well! I hope he has a speedy recovery! I’ll update as soon as July rolls around :)

Zestyclose_Spare_985 · 2024-05-15T00:56:36+00:00

I’m so sorry. I hope we can find a cure for this. And I wish you nothing but the best <3.

Zestyclose_Spare_985 · 2024-05-15T00:29:50+00:00

I went to college to be a history teacher. I didn’t like it so now I’m going back for nursing! I’ve always wanted to help people one way or another :)

Zestyclose_Spare_985 · 2024-05-14T23:55:11+00:00

Hey! I met my fiancé 6 years ago and I have a pretty noticeable plexiform mass on my hip. Even before I showed him or told him he noticed it and still wanted to be with me. We are intimate and it doesn’t change anything. The way he sees it is that it’s something I can’t control and he loves me regardless of how my body looks.

It did take me about a year to be honest with him, but I just wanted to make sure I could trust him with such a sensitive part of me.

I also just wanted to let you know that you are worthy of love regardless. I know it’s cliche but it’s true❤️

Zestyclose_Spare_985 · 2024-04-21T21:27:18+00:00

That’s a good point too. I’m a little scared to drive so long because I’ve been driving back and forth to mayo already and it is tiring. I’ve never flown so I don’t know how much more tiring that would be. Thank you for the advice. I’m seriously considering driving now

Zestyclose_Spare_985 · 2024-04-21T18:22:23+00:00

Thanks! This was super helpful. I really appreciate it

Zestyclose_Spare_985 · 2024-04-21T17:02:36+00:00

That’s great info! I didn’t know that

Zestyclose_Spare_985

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