Skip to main content

Support for NF

You know, having NF is really isolating. Other than my mom and brother, I have nobody to really share this with. Of course, you guys (my friends) are amazing at supporting me, helping me feel better when i am in pain, but I'd really like to talk to more people who have this disorder. I have joined many FB groups, and I am hoping when I am not so busy with classes that I can meet up with some people. I recently joined a blog that a high school pal introduced me to. Her friend has NF2 and is working on a literary magazine promoting the cure for NF. She does tons of races (she's pretty amazing) for NF fundraising. My best friend ran in honor of me in the NF Cupid Undie Run  - I wish I could do it! Maybe I'll start running. Who knows.

Anyway, I want to know what makes YOU feel isolated?

Comments

Popular posts from this blog

On Saying Goodbye: Leaving Boston after 17 Years

Dear Boston and all the people who have been in our lives: Thank you for the (just shy of!) 17 Years! What a beautiful city this is. It was such a privilege to call Boston home. You were worst of times (cancer, other health issues, losing Chaucer and Dante, job losses/ unemployments on both ends) but you were mostly the best of times (meeting the best people, having Oliver, completing advanced degrees, advancing in our careers, growing as people). You quite literally saved my life.. While some memories are quite triggering, they are reminders of strength and perseverance. And I am filled with thanks having been in the right place at the right time . Now here comes a waterfall of photos   Us in our early days here, circa 2008 Our graduations from Boston College in 2012 and 13 respectively  (I was pregnant and didn’t yet know in this pic!) Oliver’s birth in 2014 When i first moved here, I was not city savvy. I was not public transit savvy. And I HATED the cold and snow.  17...

Can I get a break? I guess not.

I guess it was the end of April since I last posted. Something like that. Well since then I've finished classes for the semester, and while I should be stress free, I am even more stressed. FML. I believe I mentioned in my last entry that I saw my PCP and she wanted me to have an endoscopy/colonoscopy soon but I didn't go into details why: because  at least for the endoscopy order, I still have troubles swallowing and my heartburn is bad (I also just need to have my yearly cancer check), but as for the colonoscopy order, she thought perhaps I grew colon polyps, which is why I am so anemic. She wanted me to get it done ASAP, but with final papers/exams, plus the hub leaving for most of June PLUS my surgeon not being free til July, I booked my appointment in July. Well on Monday I had a fellow up with my PCP and she wasn't really happy with me waiting til July. She worked some magic and I had my procedure done today-- with my gastroenterologist- I'm still mad at him f...

My PCP is the (mostly) best!

I haven't seen my PCP since...I don't even know when. It was a long time ago. So we had about 100 million things to catch up on for my physical today. I had to get bloodwork done prior to this appointment, and the results were pathetic- but it's all my fault. See I was really really really good abotu taking my vitamins every day (minus a small moratorium after my friend died) until December, when our flight was canceled and we couldn't get home for 4 days. Since then, I was good about taking my Prilosec, but the others...yeah. I was lazy. Well now I'm anemic (despite the fact I DO eat things rich in iron, but OK) and all my vitamin levels are deficient again, so not only do I gotta restart, but I have to up my dosage to double. AND with my anemia, just my little Flintstones vitamins + iron (which WAS doing the trick) apparently won't anymore, soooooo I have to take this god forsaken elixir. It's just a teaspoon, but because it has "teeth staining ag...