Share with the community

See all forums

Top discussions

Carenity community members are active every day, participating, commenting and helping one another. These top discussions are a reflection of the discussions in all the condition forums, which generate a significant number of comments, reactions, and recent participations. They are of great interest to our members.

See all forums

avatar Dr.WhoPeggygmail.com

avatar Breathmaster

avatar gommer1

@KathyA‍, please read what I wrote above on using oxygen. I am so, so, thrilled to have portable oxygen that gave me more of my life back. I was told in 2011 when I lived in San Miguel de Allende at 6,400 ft altitude that I needed to go on oxygen, but all I saw around town was one woman with the heavy metal canisters in a cart behind her, and that looked terrible. I moved back to near sea level and put off needing oxygen all day for another seven years, just a Bipap at night.

Finally I was huffing and having to stop every few feet even near sea level, but I still didn't want to be lugging a heavy canister behind me. I ran into an old friend who was always really active, ballroom dancing, hiking, fly fishing in rivers. And there she was with an Inogen in a backpack, doing everything she'd always done!

She showed me all about hers and the total package with machine, extra 8-hour battery, two battery chargers for house and car, carrying case, and extended warranty, was around $3,300!

Finally I saved enough for it and have loved it every minute since. I started on 2 for almost a year but had to go to 3 for every day. I switch to 4 liters a minute several times a day when I still get winded bad, and have gone up to 5 for stair climbing. I worry that I will need to go higher than 5 eventually, but I hope by then there will be sronger machines developed that go higher, though then the $500 batteries only last a few hours before needing recharging, instead of 6-8.

The portable ones now are breath-operated--you have to be breathing into the nose cannula for them to work. And my BiPap at night requires continuous flow, which the big oxygen machine Medicare covers provides, so I need both machines. Some day they may all be continuous flow and still portable.

There are cheaper, refurbished units available from the Inogen factory, too. After 1 1/2 years mine started sending strange messages and I called the factory and they sent a new one out the next day! I sent them the old one back no charge. So I am pleased with service, too.

Hope this helps you accept your machine. I am so, so happy I got mine and wish Medicare paid for everyone who needed one.(I understand in a few cases they will pay for one now, but not my particular Cigna Medicare Advantage plan.)

I bet when you go to your reunion you won't be the only one on oxygen! And everyone will be so old! The ones who are already dead and not there are the ones to think about--how many of them had COPD? Fourth leading cause of death in the US before Covid, so now we're fifth. Be glad for all the help you can get! I hope  you have a wonderful reunion!

See the best comment

avatar Jujubeaner

avatar naptnm

avatar mvn481

avatar 1984survivor!

Best comment

Carenity members react daily to comments and responses within a discussion. The best comments are those that have received the most "Helpful Response" reactions. These comments are deemed useful by the community and are likely to be of service to the community at large.

See all forums

avatar Mishelleholdee

avatar Shenita

avatar Melissa

Yes I agree. Im on morphine and Hydrocodone/Acetaminophen and yours as well. I have some others also. If I want to work in the back yard, I am sleep mode if I set down. The next morning and at night is paying with great pain. Its a hard road in many ways. We have to keep going best as we can. Have a smile and good day to you. I have the stimulator too.

See the best comment

avatar sara_at32

avatar Davy10?

avatar camping50

@Courtney_J I am getting very nervous and scared because the surgery is July 13, 2021. My parents both died this year so I dont have them to talk to.  My mom died on Feb 16, 2021 with a sickness she was suffering for 18 months so i was dealing with that for the last months and then my dad had a major stroke 3 weeks after my mom passed away and he could no longer go back to his assistance living so we had to find a nursing home.  We found one he was only in there 3 weeks and then he passed away on May 6, 2021.  Right after all that I was diagnosed with cancer so I have been on a train that is non-stop.  I feel like I am so tried out and I dont have much energy left.  My sisters are not helpful they keep telling me just pray.  They both got to take 2 weeks vacation after my mom and dad passed away.  I have not even had time to take a breather I am just on the train of bad luck.  That is how I am feeling.

See the best comment

avatar JennyRee

avatar idontdrink

A low-carbohydrate diet limits carbohydrates such as sugars and starches found in grains, fruits, and vegetables. These diets are often high in protein and fat. Low-carbohydrate diets have been shown to improve blood pressure, cholesterol levels, and blood sugar control in people with diabetes.

See the best comment

avatar smccann

avatar Rgallagher

avatar LizziB

@Thakera Yes, even on Medicare it was $400+ a month. My Pulmonologist arranged for me to get it with no copay from GSK, GlaxoSmithKline, you can look up their assistance program at https://www.gskforyou.com/ Hope it goes okay for you, I am just in the process fo renewing mine for next year.

GSKForYou | GSK Patient Assistance Program

Learn how our program can assist you if you need help paying for your GlaxoSmithKline prescription medicines and vaccines, whether you have coverage or not.

See the best comment

avatar JennyR83

avatar Thakera

avatar Dr.WhoPeggygmail.com

Pets are my key to help me feel better. I would never go without a dog. They are the ultimate in unconditional love. People can learn a lot from dogs! Check out your nearest Humane Society and go for a visit!

Be sure to update us, would love to see how you are effected from a dog🐕‍🦺

See the best comment

avatar Polina.K

avatar psbg123

avatar nomorenomore

I have been on it for about a year, I have lost 12 pounds,it kind of curves your appetite. My insurance does cover it,I am really satisfied with the results of my blood sugar due to this insulin. I would recommend it to anyone who is Type 2!Sometimes I feel nausea, but I have gotten use to it,but it affects each individual differently.

See the best comment

avatar stasnislav1

avatar Cmspain4

avatar Tstokes

@HelloKitty I started taking kratom when I was diagnosed with cervical dystonia, it means I have constant pulling of my neck and shoulder muscles. Botox is the primary treatment , 6 to 8 shots targeting muscles but its hit and miss. I told a friend about this and he told me about kratom, so I went to a kratom shop and talked to the owner. He learned I was an Army Veteran and sold me some capsules. Unbelievable the kratom knocked out the pain and relieved some of the spasms and pulling that was 5 years ago, and I am still taking it for chronic pain. I have found the vendors to trust and a fbook website to share experiences with others. Like all things kratom must be handled with common sense, and reading info on the web helps educate us all. IT IS THE ONLY THING THAT HELPS WITH MY CHRONIC PAIN

See the best comment

avatar mickey

avatar Mad1952

avatar Erica11775

My psyche nurse who works with my therapist has prescribed me different hypnotic sleep meds, Belsomra, most recently. I live alone in an apt bldg. I'm afraid to try it. I've heard of people sleepwalking, what if I leave the bldg and get locked out? I take 1mg of Klonopin about an hour n half before I want to sleep. I need background noise so I turn on the TV down low on the Angel Studios channel. I have The Chosen series running. Great show. I pull the comforter over my eyes so it blocks the light. No matter what I do, I wake up every every every morning in excruciating pain and n es to immediately get up and start moving, making coffee, feeding cat, reading news. I

I'm really struggling to get an official diagnosis. I have every symptom of AS along with the HLA-B27 gene. I'm all alone and suffer depression and PTSD. I have great faith in God so I know things will get better one day. Finally get to see rheumatologist in two weeks. 🙏✝️♥️

See the best comment

avatar charding8290

avatar Mrspeedy

avatar Somya.P

It can be very frustrating trying to get help and when you are already struggling the search can be even more frustrating. For me the first step is making sure my insurance will cover the visits, once I have done that I check reviews on therapists with the understanding that it is the opinion of others but generally if you see majority of good reviews then it is a good therapist, but you really won't know for sure until you meet them yourself. As for getting an appointment without having to wait a long time I have found clinics have more open slots then single providers, also if you don't mind doing virtual you can get in much quicker than in person. My best advice is to set your mind to taking the time and doing research.

See the best comment

avatar Baldmedic1

avatar Dr.WhoPeggygmail.com

avatar majortom

Good morning @majortom. Fantastic questions!! Happy to help. I'm also pretty new to living w CPAP machine. And, congrats on finally sleeping!! I tend to clean my tubing weekly, using dish detergent & cleaning vinegar + water. I wipe out face mask couple times a week, & Only use distilled water. Tried tap water, but learned minerals in that can hurt machine parts. The reservoir just needs to be emptied of last night's water, maybe wiping it dry ( I don't do that). I've been using CPAP therapy for a year or so, & still don't feel rested. Unsure why. Yet, again, congrats on getting solid, restful slumber.

See the best comment

Most popular health forums

Exchange with our community of patients in dedicated areas for different chronic conditions. The following are an example of the existing forums on Carenity. There you can ask your questions and share your experience with members facing the same challenges as you.

Carenity communities by the numbers

500 000

Members

1 024

Forums

251

Groups

3 162

Discussions

23 206

Comments

Our team

Hela

Hela Ammar

Pharmacist, Hela is a data scientist at Carenity. Using her scientific and medical knowledge, she supports various project managers to carry out real-life studies conducted with members of the community. A graduate of the Faculty of Pharmacy of Monastir in Tunisia, Hela holds a PharmD. After an internship as a market analyst at the Ministry of Public Health in Tunisia and an internship as an assistant diabetology product manager, she decided to complete a specialized master's degree in Pharmaceutical and Biotechnology Management at ESCP Business School. Hela joined Carenity in May 2022 as a data scientist after completing her end-of-study internship at Novartis as a junior product manager working with solutions for severe asthma. Through her various experiences in hospitals and pharmacies, Hela has had the opportunity to work closely with patients and has developed a deep knowledge of chronic diseases. 

Lizzi

Lizzi Bollinger

Lizzi Bollinger is a Community Manager for the US and UK communities at Carenity. She also writes articles for the Health Magazine. Lizzi is responsible for member engagement, she supports patients and their families on a daily basis by animating and moderating Carenity's English-speaking communities and she participates in improving the site to allow members to navigate it more easily.

Polina

Polina Kochetkova

Polina Kochetkova is presently an intern in the digital marketing team. Her role is to animate and moderate the Carenity community of the US/UK markets to provide the best possible experience for the users. She is also responsible for writing and translating health articles as well as creating content for the social media platforms. She is pursuing her Bachelors in Fashion Marketing from IFA Paris university and in her spare time loves to play tennis and listen to music.

Somya

Somya Pokharna

Somya currently works as a Community Manager on the Carenity team. Her main role is to engage and moderate the community in the US/UK markets, ensuring users have an excellent experience. Additionally, she writes and translates health articles and creates content for social media platforms. She is pursuing a Masters degree at NEOMA Business School. Outside of work, Somya enjoys singing, cooking, and exploring new places.

Mrspeedy

Mrspeedy

Ambassador member

Patient, Autism Spectrum Disorder

mrscarone

mrscarone

Ambassador member

Patient, Multiple sclerosis

Jastanley9

Jastanley9

Ambassador member

Patient, Multiple sclerosis

dan.varady

dan.varady

Ambassador member

Patient, Multiple sclerosis

charding8290

charding8290

Ambassador member

Patient, Depression

Sugar67

Sugar67

Ambassador member

Interested, Heart attack / Infarction

Tescott1981

Tescott1981

Ambassador member

Patient, Bipolar disorder

chais18a

chais18a

Ambassador member

Patient, Depression

Country115

Country115

Ambassador member

Patient, Bipolar disorder

Join now!

What our members have to say

These are quotes and opinions submitted by Carenity members. Here patients, their loved ones, and those interested in their health share their experiences and opinions about the Carenity forum and what they have learned from talking to other patients.

"I was recently diagnosed with fibromyalgia and I often feel that no one understands. At Carenity I have met so many other people with fibro. It’s nice to share with people who understand me."

UK-US_Veronica

Veronica
Fibromyalgia, Patient
50 years old

"People don't understand how difficult it is to have Crohn's. It's a relief to share my thoughts and worries with other patients who get me."

UK-US_Pete

Pete
Crohn's disease, Patient
28 years old

"My mother has MS and I've grown up seeing how it affects her. It's so painful to not be able to change it. I'm happy to have found ths site, so I can give advice and support to anyone with MS."

UK-US_Ashleigh

Ashleigh
Multiple sclerosis, Relative
33 years old

"I've been in and out of depression for years and just need to talk about it with people who understand! It's great to have a place like Carenity to turn to where I can talk to other people who understand what it's like battling mental illness."

UK-US_Mark

Mark
Depression, Patient
44 years old

"I've gone through a lumpectomy followed by radiotherapy, which went well for me. I am happy to share advice that might make life just a little easier for other women with breast cancer!"

UK-US_Gigi

Gigi
Breast cancer, Patient
62 years old

"Carenity has really helped me open up about my AS. I can always ask other patients for advice on my medications and treatments and I don't feel alone anymore."

UK-US_Kevin

Kevin
Ankylosing spondylitis, Patient
64 years old