ruth-edwards
Forum Replies Created
-
I’m not sure but his situation is the same as mine.
I’m starting my 8th year of PF, on oxygen 24/7 and in the last year my belly is bloated most of the time and sometimes hard. I’ve found some of it is my diet, as I want to enjoy meals with my husband to add to our memories. I think the medication itself has it’s own toxins that you need to drink a lot of water to help flush out. Plus, make sure that you have regular BM’s, which isn’t always easy, with all the meds we need to take. I have a phone appointment with my Palliative doctor on Monday & I’ll ask her if this is also an indication that this is the end stages. I know for myself, I have definitely lost a lot of ground in the last month alone. I was walking a mile a day on the treadmill but it was starting to cause so many aches in my bones. I’m also more and more sleepy…so? -
In the last two years I’ve become a walking, human puddle. I’m always hot and have to dress in layers, so I’m always able to strip down to just a tank top. This is happening now throughout the year as well. I literally will be fine/dry one minute and then my head feels like it’s on fire, my face is red and I look like someone is holding one of those rainforest showerheads over me. I already went through menopause so I know it’s not that but, cruelly..it feels like getting to live it all over again! I have actually made an appointment for labwork to check my thyroid. I wondered if all the strong meds have somehow effected that. PS..I sleep with a large fan right next to the bed, face level and even then I still overheat.
-
Usually the 7ft part, every 2 – 3 weeks…or when it starts to irritate the skin on my cheeks…that seems to be a sign to change. The 50 ft. part about every 2 – 3 months..probably should be sooner. I’m trying out different kinds. One that said it didn’t tangle/knot up so quickly.
-
Same suggestion. I use my Nexus walker. My liquid oxy tank on the seat, along with my purse with one of the straps wrapped around the handle area. I have a water bottle holder hanging from one of the sides. When I go into a store where there will be a cart, I leave the walker in the car and use the shopping cart for personal and shopping goods.
I’ve been doing this since I was 55. 58 now. Somedays it’s tough since people stare at you. Between the oxy tubing up my nose and pushing a walker, but looking middle aged…people seem to think that oxygen and walkers only happen to older folks.
I also own a scooter. Needed that when I was trying to get my strength back after a bad infection. They too are very handy, but try not to get dependent on it. Walking is always best..you need to keep moving.
-
This wife started a group on line and wrote a workbook as well. She and her husband Tony are lovely and very helpful.
-
Thanks Steve, I’m going to look into ordering serrapeptase
Glad to try different suggestions and see if one helps me.
-
I have been taking Clear Lungs, a Chinese Herbal in capsule form for 3 months now and can’t say I’ve seen a difference. Still hoping to hear about the laser treatments with the chiropractors. Loved the 70% chocolate idea for dry cough. Just so fantastic to see so many ideas being suggested for possible relief of all kinds of symptoms. Hopefully, one day, an actual cure.
-
No @lwaldschmidt , I have PF. Diagnosed in 2015. Told I had a year…husband very suppportive then…but now I’m in my 4th year and for the last two, we’ve been separated.
We’ve tried getting back together and seeing only each other, while he lives at a different address. It just never lasts and the words we both say from frustration and fear are devestating and take their toll.
The stress of this disease, with no clear end in sight, took it’s toll on my husband. I just wondered if there was anyone else going through the same thing.
I’m only 58 and still relatively strong. I do require oxygen again 24/7 after the last infection I picked up.
This disease takes so much from us…but it feels like a tap dripping…you just slowly start to lose so much.
For all you caregivers that have been able to endure because it is rough on your side as well…Bless you!