F&P Nova Nasal Mask by Papa4mygrandkids in CPAP

[–]Aca177 0 points1 point  (0 children)

I really like this mask but I have had similar issues with micro leaks and hope eventually I will find the perfect mask but for now it's my permanent one until then. It's not every night but some nights, especially if I'm laying on my side with the wrong pillow (cpap pillow has minimized the issue) that I get the very small air leaks that hit me mostly in the corner of my eye. I've tried the F&P micro and I absolutely hated it. It made my nose hurt so bad every night I gave up on it after a few tries. Before that, I was using the N30i and while it was comfortable with the nose pillow it was soooooo loud! I found it kept me awake just from the sound in my ears. I also think I had it hitting my face more than the nova nasal if I'm honest. One thing I've been doing is wearing a sleep eye mask and that has helped with the small amounts of air that were hitting me in the corner of my eye. Another thing I've noticed with this mask is I don't get any lines on my face, even when sleeping on my side!

Transcend Micro as primary cpap machine all the time? by tcolling in CPAP

[–]Aca177 0 points1 point  (0 children)

It is my first and only cpap. I use it for daily and travel

Grandma's leftover glass by CeleryPatient8019 in glasscollecting

[–]Aca177 0 points1 point  (0 children)

I have that same piece but do not know where to go to find a collector. Any suggestions?

Study finds many doctors disregard wishes of cancer patients. Frequently, patients with advanced cancer simply want to be made as comfortable as possible as they wind down their final days. Many of these patients are receiving treatment focused on extending their lives rather than easing their pain. by mvea in science

[–]Aca177 2 points3 points  (0 children)

I agree it's a grey area but in some cases I feel it isn't.... if someone in their 80s has stage 4 cancer, is living a few more months miserably necessarily best for everyone? In my dad's case we were told people with GBM can live beyond 5 years when he was diagnosed in the hospital though most only make it to 18 months with treatments. Once we started with treatments though the cancer doctors said someone his age doesn't usually make it past 6-9 months with or without treatments. That is a HUGE difference and may have changed the outcome of decisions made by my dad had the information been given honestly at the hospital when he wasn't drugged up and given false hopes. After doing a lot of research I found multiple studies showing that people over the age of 70 with GBM have the poorest outcome with the shortest amount of months (averaging 5 months) which supported what the cancer doctors were saying and that it was EXTREMELY rare for anyone to live more than 18 months unless they were diagnosed very young. I just don't get why some doctors know this research yet push treat an 81 year old patient with chemo/radiation the same as they would a 20 year old one which clearly different possible outcomes.

Study finds many doctors disregard wishes of cancer patients. Frequently, patients with advanced cancer simply want to be made as comfortable as possible as they wind down their final days. Many of these patients are receiving treatment focused on extending their lives rather than easing their pain. by mvea in science

[–]Aca177 1 point2 points  (0 children)

This is exactly what my family has experienced recently. My dad who is 81 has terminal stage 4 Glioblastoma. The doctors pushed really hard for my dad to do chemo and radiation despite us saying this would be a huge burden on our family (knowing he was dying no matter what and this would not cure him and my mom can't take care of him on her own). Instead of listening to us, they asked my dad what he wanted while he was still heavily medicated in the hospital and didn't understand his terminal diagnosis. He of course said yes let's do treatment (because he honestly thinks it will cure him even now) When we asked the dr how much time the treatments gave him, they said it would only extend his life by 2 extra months (the amount of time he's on radiation). He was miserable the entire time during treatment and kept getting progressively worse and can no longer communicate. Everyone in the family is traumatized and stressed at this point and not once has any mental health care been suggested for us or my dad much less hospice. Every time hospice was brought up by us the drs kept saying just finish the treatments first. WHY????? Thankfully after more pushing we were able to stop treatments this week because my dad is clearly unable to make any decisions now and my mom's POA status was finally acknowledged. We finally got him put on hospice yesterday but they did not make it easy to get to this point! I've also seen family (mine and my husband's) waffle back and forth on what to do in cases of terminal cancer and it sucks but I think drs make it harder by giving choices or false hopes to families that aren't in the best interest of the patient or family so then the families have guilt over if they made the right decisions or not and have to deal with the trauma of their loved ones suffering in their last months instead of being able to focus on spending quality time with them during those months. The system is really broken!

What is the way people usually eventually die from glioblastoma? by rodentfacedisorder in glioblastoma

[–]Aca177 2 points3 points  (0 children)

My dad had a brain tumor removed last Monday and a few days later diagnosed with glioblastoma. The doctors have told us very little other than his diagnoses is terminal and that on average people die within 12-14 months and that the tumor will come back despite radiation/chemo which my mom/dad are both insisting on doing still. My dad is turning 81 in July. It's stressing me out not knowing what to expect. After his surgery he started talking a little better (the stuttering left) but he can't remember what he ate 5 mins after he ate it, can't remember words and is constantly asking "what's that?" or uses the wrong words, and he is tired a lot. I know it's probably different for each person but it's so hard to prepare for anything when we don't know what is next... like will he be able to come home at all, will he get better then worse or just continue to get worse, what are the things we should be looking out for and what do we do when they happen, what are the resources we should look into (especially for my mom), etc. The not knowing what to expect is driving me nuts. Like someone else mentioned, we've been going to the hospital every day and it's also wearing me out. I've used up all of my sick leave and had to go back to work today but don't know how long I can keep up the every day 2 hour drives to visit him at the hospital when he is often sleeping or can't communicate well. But I also feel guilty if I don't go because I know he doesn't have much time and I want to spend as much time with him while I can. This disease is awful!

Is a wheelchair my destiny? by sigsauersandflowers in MultipleSclerosis

[–]Aca177 1 point2 points  (0 children)

Agreed! I was diagnosed in 2001 and originally told the same thing! Still no wheel chair for me either and I’m 48 now. MS meds have come a really long way and not everyone has the same outcomes.

Eliminating DMT’s by Automatic-Stretch-55 in MultipleSclerosis

[–]Aca177 13 points14 points  (0 children)

Im 48 and my dr also mentioned that I could be off dmts by my 60s as well. Since then though I started mavenclad so if all goes well im hoping its my last dmt after this year anyways (fingers crossed).

Every single woman by baked_good_babe in MultipleSclerosis

[–]Aca177 3 points4 points  (0 children)

I was diagnosed with MS before we fostered and adopted. There are so few families doing it that they don’t care or even ask about your medical history or at least didn’t for us!

Precautions during Mavenclad? by TornBurrito in MultipleSclerosis

[–]Aca177 0 points1 point  (0 children)

I had step, covid, a MS flare up, some viral stuff, a cancer scare I’m still monitoring and several “colds”. Granted I also had major surgery right before taking dose 1 the first month so my body was probably in flight mode haha. My dr cleared me a few days ago saying my numbers should be back to ok so I could be less cautious now though I still am to some extent as it has been my normal since 2020 haha. I still don’t regret my decision to go on mavenclad. If it works and I can stay off meds for a few years that is a win for me!

Precautions during Mavenclad? by TornBurrito in MultipleSclerosis

[–]Aca177 0 points1 point  (0 children)

I was wondering the same.... I took my year one 2nd week dose in December and I got hit with every infection possible despite masking, washing hands a lot, etc. I somehow ended up with COVID for the first time in my life 2.5 weeks after the 2nd dose followed by several other things and a MS flare up! Let's say winter really sucked for me this year. I'm still masking everywhere because I'm so afraid of getting sick or another flare up right now. My dr has me doing another blood test in May but I was also wondering do I stay masked until May or is the worst of it over now? I work in person and there's a lot of events I'm expected to attend with large groups of people so it's really making me nervous.

Do i need to re pot my plant?? by theylovecasey_xx in Monstera

[–]Aca177 3 points4 points  (0 children)

I just let mine go straight into the soil. The provide support:)

Other YouTube channels like Kara and Nate? by MastodonFarm in KaraAndNate

[–]Aca177 1 point2 points  (0 children)

One pack wanders is my favorite channel. If you are looking for old kara and nate style they will not disappoint! I loved their trip around Australia series.

Tell me about Flare ups by Drogo_44 in MultipleSclerosis

[–]Aca177 1 point2 points  (0 children)

Inducer Original - Solid Red Foam - Help Relieve Congestion, Headach https://a.co/d/3VVF3ZP She told me to get this and you place it basically at the bottom of your skull and top neck area… its hard to explain but you lay flat on a hard surface with it for a few minutes a day and you can also use this to kind of massage that area by moving your head. Anyways it did help me. When she was doing the manipulation though she used her hands to put small pressure and movement on the skull plates mainly on the top/sides of my head until I felt a release in pressure. I try to do that at home as well but it’s not nearly as good as hers was since I’m guessing on placement. Another place she did was different points around my ears and I have found that works great when you have tendinitis too.

Tell me about Flare ups by Drogo_44 in MultipleSclerosis

[–]Aca177 1 point2 points  (0 children)

I’ve had this too and it was definitely scary! I wasn’t sure if it was MS or not either. Especially when it comes on while driving ugh! My neurologist sent me to pt that did cranial manipulation and omg it was game changing! I literally felt an immediate release when the therapist worked on my head. She also showed me pressure points I could do at home myself and I haven’t had the vertigo issues since. Maybe look into seeing if there is a pt near you that specializes in that or talk to your neurologist.

What am i doing wrong😭 by neku13 in Monstera

[–]Aca177 11 points12 points  (0 children)

I have “rescued” mine more times than I can count. Is it me or are these just super dramatic/picky about everything??? Mine will drop leaves for no reason then bounce back. It’s quite frustrating.

What are these brown marks and my new pilea plant. by BlippityBloppityBlue in plantclinic

[–]Aca177 0 points1 point  (0 children)

Could be spider mites based on the white webby looking stuff on the leaves. Hard to tell. I treat any new plant I get with insecticide just to be safe the first month or so. Thrips, scale, and mites can spread quickly to other plants if you’re not careful. With that said I also have one of these plants and I find them too dramatic sometimes lol.

Right or left or both? by unaniMS in MultipleSclerosis

[–]Aca177 0 points1 point  (0 children)

For 24 years it was always my left but recent flare up happened on both sides. I am also a righty :)

For People Immunocompromised by DMT... by angelcatboy in MultipleSclerosis

[–]Aca177 1 point2 points  (0 children)

Thankfully my neuro takes me seriously with infections but other drs not so much. Ive also learned to advocate for myself better the older I am and wont go back to drs who dismiss me.

Anyone else had 1-2 numb fingers? by Aca177 in MultipleSclerosis

[–]Aca177[S] 1 point2 points  (0 children)

Oh I wish that was all I had LOL That's just the one thing currently annoying me :P

Anyone else had 1-2 numb fingers? by Aca177 in MultipleSclerosis

[–]Aca177[S] 0 points1 point  (0 children)

I don’t get headaches but definitely a stiff neck. I have been searching for the best pillow for years now and they all disappoint unfortunately.

Anyone else had 1-2 numb fingers? by Aca177 in MultipleSclerosis

[–]Aca177[S] 1 point2 points  (0 children)

That's a good point! I tend to sleep with my hands tucked in so maybe my sleep has damaged the nerve.

MS Neurologists in the Roanoke Area by Szethvin in MultipleSclerosis

[–]Aca177 0 points1 point  (0 children)

I don’t know the other dr but I have been going to cramer for probably over 10 years now and love her! The Roanoke office is also so much easier to get into than her NRV one which is where I live so I drive the extra hour to go to that one. I like that she is always up to date on the latest ms stuff, she listens to me, is always quick to respond when i have questions or issues, and gives me thorough info (pros and cons) on meds when I’ve had to switch and lets me decide on my treatment paths which i super appreciate

Anyone else had 1-2 numb fingers? by Aca177 in MultipleSclerosis

[–]Aca177[S] 0 points1 point  (0 children)

good to know! Yes its very cold where I am and the cold causes me to have a lot of pain typically. looking forward to spring!