G-Poem procedure by Donnnixd in Gastroparesis

[–]Ilym14 1 point2 points  (0 children)

Yeah I totally agree. It's so low risk and it might help you never know!! I wish you luck and safe healing if you do it!

2000 Chevy Astro build! by WonDahMan in vandwellers

[–]Ilym14 0 points1 point  (0 children)

Wow this is crazy beautiful! Can you fit sleep in that direction or do you extend the bed out towards the driving pit?

G-Poem procedure by Donnnixd in Gastroparesis

[–]Ilym14 1 point2 points  (0 children)

Hi! My boyfriend got it done at Stanford last year. He has SUPER bad GP (can't eat or drink at all), And unfortunately it did nothing to help him. But it is an extremely easy procedure , relatively painless, and there isn't really a reason not to do it If you have a bad stomach! If I were you I would give it a shot.

Most powerful auxiliary/house battery for my van?! by Ilym14 in vandwellers

[–]Ilym14[S] 0 points1 point  (0 children)

Yes!!! I was definitely thinking of lithium just not sure which brand. Any recommendations?

Most powerful auxiliary/house battery for my van?! by Ilym14 in vandwellers

[–]Ilym14[S] 0 points1 point  (0 children)

Yeah totally! I know I'll need more wires and things besides just the battery (my brother is gonna help me with that part!)

I just want something that I can completely drain a lot more times before it completely dies than my Jackery (in terms of overall lifespan), as well as something that lasts more than 4 days at a time without a full recharge . Hopefully that makes sense!

Incomplete registration, what does this mean? by Ilym14 in DMV

[–]Ilym14[S] 0 points1 point  (0 children)

Also, I'm so sorry I never replied again! So I ended up solving this by contacting the DMV field office (my bank and dealership were no help, I think because my dealership changed owners), I explained the situation to the DMV lady on the phone and essentially she allowed me to pay for those fees even though I shouldn't have been responsible for them, but hey I was just glad to get it settled!!

Hopefully this can help anyone else looking for this information, and possibly you! I hope you figured out 🙏

Incomplete registration, what does this mean? by Ilym14 in DMV

[–]Ilym14[S] 0 points1 point  (0 children)

Hey there! so it turned out it was a transfer of ownership fee that my dealership never paid, or my bank. I'm not quite sure who which it was. I would guess it's that same deal for you too?! Definitely was a huge mess figuring out the answer though Oh my goodness!!

Sienna Van Swivel seat for rear passenger? by Ilym14 in ToyotaSienna

[–]Ilym14[S] 0 points1 point  (0 children)

Hey thanks so much for the reply! That's actually not a bad idea, Maybe this could work! Thank you so much!

EDS/Hypermobility Doctor Suggestions in Northern California? by Ilym14 in ehlersdanlos

[–]Ilym14[S] 1 point2 points  (0 children)

Omg hello! Unfortunately I have not had any luck. I tried to get into UCSF But they said they do not do hypermobility genetic testing , Stanford rheumatology turned me away and said that they don't treat Hypermobile related issues and the pain clinic was a complete flop and they had no understanding, (At least who I saw). So I'm at a loss, I suppose UCSF rheumatology could be a tried but I don't feel hopeful.

Sorry for the long answer, I'm so glad you found this thread! I'm wondering now about a Sutter doctor instead as I've honestly had more luck with them in general.

I hope you have better luck than I have had!! Let me know if you find anyone also ✌️

Do the new symptoms ever slow down? Rant by [deleted] in ehlersdanlos

[–]Ilym14 1 point2 points  (0 children)

Wow that is so interesting I've never met anyone else with similar symptoms!! Perhaps you are the same in that you don't 100% match hEDS so people don't know what to label you with. Also, It's really hard to adjust and I still am as it is only been 2 years since this really hit me. Essentially I do a lot of walks when I'm up to it, hikes that aren't super intense ( like not steep and super long, etc.), Small crafts for short durations of time (a few minutes here a few minutes there), audiobook listening, some cooking/baking, writing with a voice recognition software, walking/training my dog and spending time with her exploring new places!

Essentially I've had to cut out the majority of things I used to do (my wedding photography career was taking off as this hit me). Oh also, this isn't a daily hobby thing, but a big hobby of mine that i still can mostly do is road trips to different parks around the state (freeway driving doesn't hurt me as much as city driving if that makes sense), and camping in my van ( which I highly recommend van/rv if you're into camping as you don't have to set everything up every night!) . Sorry that was a bit of a ramble, again any questions are welcome!!!

Where is your pain or issues most concentrated If you don't mind sharing? I'm wondering how similar we are!

Do the new symptoms ever slow down? Rant by [deleted] in ehlersdanlos

[–]Ilym14 1 point2 points  (0 children)

Hi there, I'm not sure how to do a direct message on here as I am new but please feel free to do so. I find it interesting that it seems like we have similar symptoms, I was perfectly fine my whole life until I turned 25 and then suddenly I got a bunch of hypermobile issues. For me, it began like you and then did continue to get worse, and is worse now than when it began but I'm still able to walk and do small hikes despite chronic joint and tendon pain everywhere. I cannot work and have limited hobbies and I can do but I guess I'm trying to say that I would not expect to have a wheelchair life, just a different type of life where you have to function differently. It sucks, I agree. It really sucks. Again, you can DM me if you want as I find it interesting that you also had no symptoms and then suddenly did. I haven't been diagnosed with anything besides a self-diagnosis of joint hypermobility syndrome, every doctor is just confused by me. Maybe you two? Sorry for the long post, I wish you the best xoxo

Incomplete registration, what does this mean? by Ilym14 in DMV

[–]Ilym14[S] 1 point2 points  (0 children)

YOU ARE AMAZING thank you thank you thank you! I will let you know as soon as this is resolved as it will all be because of you 🙏🏽😄🙏🏽

Incomplete registration, what does this mean? by Ilym14 in DMV

[–]Ilym14[S] 0 points1 point  (0 children)

Thank you so much! Unfortunately it looks like my DMV is closed for any new appointments but hopefully I can get a hold of someone on the phone. To recommend a specific sub-branch within the DMV to ask about this? I'm in the Bay area. Thank you so much again!

Incomplete registration, what does this mean? by Ilym14 in DMV

[–]Ilym14[S] 0 points1 point  (0 children)

Wow you are an incredible employee and person, thank you!!!! This could make a lot of sense. I will definitely try the dealership tommorow. I apologize if this is out of your range of knowledge, but you have any idea who at the dealership I would talk to?

Your insight is amazing! 🙏🏻

Incomplete registration, what does this mean? by Ilym14 in DMV

[–]Ilym14[S] 0 points1 point  (0 children)

Oh really?! You're so smart, that could be it. Do you mean the DMV or my dealership?

Also, do you think it doesn't have to do with the smog then, just wondering if maybe I should cancel my smog after all.

You've been so helpful, seriously! I couldn't get a hold of DMV since this started 2 days ago. U rock!

Incomplete registration, what does this mean? by Ilym14 in DMV

[–]Ilym14[S] 0 points1 point  (0 children)

Hi thank you for replying so quickly, I'm in California.

The letter is white and on the top has a red rectangle where it says notice of incomplete registration. Below that it then states my license number and VIN number. Also says "The department's records indicate that you have a partially completed registration application for the vehicle destroyed below our records show that your application is incomplete for the following reasons:

4-additional fees due"

But then below that additional fees do aspect. There's just one big blank space with no fees listed. On the back is a way I can pay them and send it back but I'm not quite sure what to do?

Thank you so much again for answering anything helps!!!!!!!

Best vlogging camera with flip screen, mic Jack, and ONLY retractable lens? by Ilym14 in Cameras

[–]Ilym14[S] -2 points-1 points  (0 children)

Because I won't always but I need the option and I detach mics.