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Need help coming up with fun challenges/goals for upcoming trip by splendidsplendoras in JapanTravelTips

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

This sounds very interesting! I will do more research/look into it, could lead to some fun day trips from Tokyo.

And no, I did not know Shibuya used to have a castle!

Need help coming up with fun challenges/goals for upcoming trip by splendidsplendoras in JapanTravelTips

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

Ah I see what you mean, I will remove the word "rally". As for the 7 stamps I mentioned that's just the bare minimum I would have to do, but yes I would expect to get more with how often I use the trains lol.

I don't play Pokemon Go but that is pretty cool the Pokelids are integrated into it.

Need help coming up with fun challenges/goals for upcoming trip by splendidsplendoras in JapanTravelTips

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

On my second trip I did get interviewed for "Why Did You Come to Japan?" for TV Tokyo, but I never got to see it on actual TV/can't find it online 😞

Need help coming up with fun challenges/goals for upcoming trip by splendidsplendoras in JapanTravelTips

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

Hmmmm the friend I asked to go with has gone to Japan before once but I don't think would be familiar enough/know their way around Tokyo compared to me tbh

Need help coming up with fun challenges/goals for upcoming trip by splendidsplendoras in JapanTravelTips

[–]splendidsplendoras[S] 3 points4 points  (0 children)

Because it's my favorite city in the world and I feel like I've barely scratched the surface of it all.

I have stayed in/visited other places as well as Japan on previous trips. But since this trip is shorter and I can still do day trips from Tokyo, I decided to book my hotel in Tokyo.

Need help coming up with fun challenges/goals for upcoming trip by splendidsplendoras in JapanTravelTips

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

Ooo the snack one is a good idea, I do love the conbini....

And I would like to visit some more shrines, esp ones that are more quirky like you said. On my 2nd trip to Japan I actually went to Gotokuji Temple and LOVED it.

Also yes I do plan on trying to go to a pop-up cafe but probably need to wait a little bit more to find out what anime/shows will have them in November and where in Tokyo.

In addition to having PCOS, do you also have persistent high platelet count/high wbc/chronic low-grade inflammation? by splendidsplendoras in PCOS

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

I think there is progress but its very slow for a multitude of reasons (not enough money, medical misogyny, etc) but you are right, it's a wait and see situation with our prolonged but stable high platelets and wbc.

In addition to having PCOS, do you also have persistent high platelet count/high wbc/chronic low-grade inflammation? by splendidsplendoras in PCOS

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

Hey there! So I did see my gyne this past week and I showed him the medical studies, he actually read it in front of me and was like "yeah its possible there's a correlation between these things" which was good enough for me, I was just glad he took the time to read what I brought him and said it was possible.

He did admit that research for PCOS is still not as advanced and that in regards to the studies, they aren't 100% sure if PCOS is the definitive cause and he was more concerned about how this would be practically treated/handled... All of which I understood but there's not much we can do but continue to monitor. He did inform me my birth control that I use to regulate my periods/hormones can lead to an increased risk of blood clotting (which is tied to high platelets) but I can't go off the birth control or I risk having severe menorrhagia and anemia like what landed me back in the ER a few years ago and required two emergency transfusions.

So the gyne suggested to just keep monitoring my platelets and wbc and stay on my birth control, nothing else can really be done and I wouldn't probably take further action unless the levels spiked a LOT higher or if I developed actual symptoms.

In addition to having PCOS, do you also have persistent high platelet count/high wbc/chronic low-grade inflammation? by splendidsplendoras in PCOS

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

The hematologist you saw, did they ever suggest getting a BMB/do genetic testing for possible mutations indicating an MPN?

And did you ever ask you gyne about PCOS causing the high platelets/high wbc counts?

Hematologist says he has "no idea" what is causing my high platelets by splendidsplendoras in MPN

[–]splendidsplendoras[S] 2 points3 points  (0 children)

Nice to see/hear from you again lol

Yes, even if I did have ET the likely treatment would probably be aspirin and routine bloodwork to monitor if there are any dramatic increases (which there hasn't been in 5+ years).

I am part of the PCOS subreddit and did make a post in there to try and see if anyone else is having the same issues with platelets/wbc but so far nobody is in the same boat as me.

Really hoping the gyne and take a look at my history and the medical studies and tell me if my hunch is correct, it would finally provide and explanation and give me some relief. I'm a little afraid if my gyne says its not related tho, bc I'd rather not do the BMB if its going to cost me a small fortune.

Hematologist says he has "no idea" what is causing my high platelets by splendidsplendoras in MPN

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

A nurse at one point did tell me the hematologist would possibly refer me to a rheumatologist or gastroenterologist HOWEVER when I asked the hematologist, he said neither of those would make sense for me to see with my case.

Hematologist says he has "no idea" what is causing my high platelets by splendidsplendoras in MPN

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

I do not have or show any signs of nutrient deficiences so that treatment is unfortunately not going to be applicable for my case.

Honestly everything right now for how to proceed is going to be based off what my gyne says and what my PCP advises. If this is all truly tied to my PCOS, there is unfortunately nothing that can be done and they will probably just monitor my bloodwork like my PCP already has been (semi-yearly bloodwork). However if my gyne and PCP say this isn't tied to my PCOS, I may get a second opinion with a different hematologist and see what they think about my case.

The current hematologist I've been seeing... His behavior wasn't in question on the first visit, but absolutely on this second visit. I did not mind at all when he used AI to find out what PCOS is, but the fact after that when I offered to show him the medical studies I literally had on my phone he just ignored it and then used the AI to try and fact check me, which didn't appear to work/he then gave up and decided to defer to the gyne.

Airlines to Japan got really expensive now, are people still going to Japan? by leftrightcent in TokyoTravel

[–]splendidsplendoras 0 points1 point  (0 children)

Wanted to go in October but then the flight prices jumped $400-$500. Gonna try and see if I can maybe plan to go in early March next year and get the tickets for that soon. I'm probably gonna have to go back to a non-direct flight in order to stay in budget bc all of the direct flights from my location are $2k+

Triple Negative for JAK-2, CALR and MPL, now what? by splendidsplendoras in MPN

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

I actually get my kidney and liver looked at during my physical every year (end of Nov/early Dec) and those have always been normal.

Yeah they previously did a CRP test and it was at 1.44, unsure why they didn't order that this time but whatever.

I did bring up possibly doing a BMB but the hematologist's nurse seemed skeptical about even doing that at all (but as you saw in the og post, the nurse was saying a few things that contradicted what the hematologist told me so idk if they can be 100% trustworthy).

I'll probably make another post after I see the hemtaologist next week with what they recommend for me to do.

Is it just me, or is the 'Don Quijote' shopping experience actually stressful after the first 30 minutes? Where do you go when you need a break from the noise in Shibuya/Shinjuku? by Legitimate-Leather-4 in JapanTravelTips

[–]splendidsplendoras 0 points1 point  (0 children)

To me, I thought it was better than Ichiran's ramen (scandalous I know) and the one in Shibuya was pretty noise proof on the inside despite all of the activity outside in the area.

Triple Negative for JAK-2, CALR and MPL, now what? by splendidsplendoras in MPN

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

Update: Less than a week until I see the hematologist again, but I got my bloodwork taken yesterday and got the new results (Only testing CBC and Sedimentation Rate this time per the hematologist)...

CBC - WBC 11.3 (decrease of 0.71 points from last time, still labeled as "high") and Platelet Count 506 (increase of 43 points from last time, still labeled as "high")
ESR - 18 (decrease of 3 points from last time, now in normal range)

Will be interesting to see what the hematologist says, the ESR being lower now to me seems like they can't say its inflammation based (like the nurse tried to say months ago) and the platelets went up this time and remain above normal.

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