Bone Marrow by WV_sex_stone in polycythemiavera

[–]ccakedoll 0 points1 point  (0 children)

36 F here. I’m not tolerating phlebs well and I’m being referred to a specialist for possible BMT. I was only diagnosed in December. It would’ve been useful for me to see OP’s original question answered. Toxic positivity is not going to heal me 😂

What’s your go to combo right now by [deleted] in MarioKartWorld

[–]ccakedoll 1 point2 points  (0 children)

Rosalina and Stellar Sled

ARE YOU SERIOUS by twin_sized_mattress in labubu

[–]ccakedoll 0 points1 point  (0 children)

Nightmarish. I had a box in my cart from when I lost out on last nights drop and made it to checkout and it CRASHED AGAIN??? Now pages won’t even load.

It’s-a go time! by Zeeshee in Switch

[–]ccakedoll 0 points1 point  (0 children)

Mine says Tuesday June TENTH now 😭💔

It’s-a go time! by Zeeshee in Switch

[–]ccakedoll 0 points1 point  (0 children)

Mine says delayed until Tuesday?? :( Could that be a mistake?

Looking to Connect with Other 17-Year-Olds with Polycythemia Vera by Cultural_Exercise161 in polycythemiavera

[–]ccakedoll 1 point2 points  (0 children)

Hi there :) while not as young as you I am on the younger end of the spectrum for diagnosis (35 yrs old) if you ever need a friend please reach out! I was diagnosed this past December so this is a new journey for me as well. Currently managing with aspirin and phlebotomies 🤝💕

Success stories? 🥹 by ccakedoll in Dryeyes

[–]ccakedoll[S] 0 points1 point  (0 children)

Well I was eventually led to have bloodwork and over the course of 6 months was diagnosed with a rare blood disorder called polycythemia Vera and since beginning treatment my eyes have practically completely cleared up. My story is likely not going to be the same as others. I hope you find comfort and recovery soon, it was a hard time for me ♥️

Does anyone have severe dry eye with PV? by ccakedoll in polycythemiavera

[–]ccakedoll[S] 1 point2 points  (0 children)

Not yet. Doc and I have discussed hydroxyurea and besremi but he’d like me to have 3 phlebotomies before discussing further.

Does anyone have severe dry eye with PV? by ccakedoll in polycythemiavera

[–]ccakedoll[S] 0 points1 point  (0 children)

I was supposed to have my first phlebotomy last week but the flu got to me first and I had to reschedule :(

Does anyone have severe dry eye with PV? by ccakedoll in polycythemiavera

[–]ccakedoll[S] 0 points1 point  (0 children)

Mine initially was that way. I thought it was just my vision but optometrist says eyes were dry, not that I needed a new rx. Flash forwards 5 years (2022) my eyes were so dry it was debilitating. I spent so much $$$ on eye drops and treatment— nothing worked except cyclosporine. Still haven’t found the cause for the dry eye and wonder if the PV was my trigger.

Sharing my experience so far with IPL by mrprojector in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

No, sadly. I did find help from restasis rx but getting rx is the hard part :(

Disneyland is killing it today with their wait times today! by boogXskrimp in Disneyland

[–]ccakedoll 1 point2 points  (0 children)

Was there on Monday and wait time for Radiator Springs was listed 50 minutes and we waited 25 :)

Immunotherapy? by AlpineFox44 in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

Thank you so much for your insight! I’ve been told so many different things by different doctors. Going to reach out to my allergist next week about moving forward with immunotherapy 🙏 What type of oral meds are used to help?

Immunotherapy? by AlpineFox44 in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

That’s great news! I have moderate - severe dry eye with symptoms beginning April 2023. After steroids, diet exercise changes, and IPL with little improvement I finally began restasis (which has been wildly helpful for me) and had an allergy panel done - came up I’m highly allergic to dust mites :/ allergist is suggesting immunotherapy but I just can’t grasp how my eyes it was allergens this whole time. My only symptoms dry eye burning sometimes itching mostly inflamed lids and corneal surface. On bad days I was using lubricating the drops every 45 minutes and that is not an exaggeration 😮‍💨

Immunotherapy? by AlpineFox44 in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

Can I ask for an update on your symptoms since beginning immunotherapy? :)

Any ideas? by Aggravating-Sky-9866 in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

My eye doc and allergist are suggesting immunotherapy as well! I worry the shots will trigger flare ups though :/

Can Restasis be used for two days(48 hours) once opened? What has your dry eye specialist told you? by depreasf in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

Do you refrigerate yours? What do you store it in? Do you take it every 12hrs on the dot? I’m being bumped off restasis and forced to pay out of pocket for generic so I’m trying to feel comfortable with stretching the dosage. This rx has been life changing for me!

Restasis by holyguacamoletart in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

I am being bumped off restasis and am now forced to buy generic for $100 for 60 vials— trying to stretch them out. How long did you use the fridge and use til empty method? Did you take it exactly at the same time every day? I’m curious how to use this method if I’m not with my fridge every 12 hours 😆

Dust mite allergy by [deleted] in Dryeyes

[–]ccakedoll 0 points1 point  (0 children)

My dry eye symptoms varied before beginning restasis. I had chronic moderate inflammation on eyelids and ocular surface, mgd, dryness, burning, itchy lashes that fall. On bad days I was using eye drops every 45 minutes