Joyce Douglas
Forum Replies Created
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Yes, do keep in touch and let me know how it goes for you. I just did a Public Speaking bit for Manitoba Lung Assoc. at their Respiratory Conference for Health Providers. It was on ‘A patient’s words on how this disease has impacted their life.’ I really enjoyed doing it and certainly enjoyed all the other speakers at the Conference also. Apparently I did a good job so they said. Hope the CBD Oil helps with the pain you are having.
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No problem Charlene. Happy to share if it can be of help. I certainly have made use of several hints/suggestions others have given. eg: hooking hose over the top of the bed rather than the foot is so much easier. Decided this morning as I was taking my shower that the hose OVER the curtain rod was great, also could hook it on the shower caddy and it also gives the hose a wash. Hey, multi-tasking, not bad! Have a great Earth Day folks.
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Hi Dianne. Yes, I know how overwhelmed one can be with more than one health issue that can cause other problems to surface that we didn’t know we had. I suppose when we think of it, when the body has a weakened condition and low immune system then we do get more new illnesses. However, like you Dianne, I find my body is having old issues cropping up again and I thought they were fine. Will be thinking of you and praying for a safe and good surgery and a fast recovery so you can get on with living with a lot less pain in that hip!! You go girl and have a great one.
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Hi to Sheila, I know what you are speaking of acid reflux. I have to eat a Tums or Rolaids often just to calm my stomach due to my Esbriet tablets. They are known for upsetting the stomach or digestion. However, if I remember to take them after eating a bit of food, then taking one pill, then about half way through my meal take another pill, and then again back to the food and be sure to have some bites of food remaining when I finish taking the 3rd pill. If I don’t do it this way I do get the indigestion. Also, sometimes at bedtime I have a short drink of water…bad move..it seems to either make me hungry or gives me indigestion. Need to take another Tums. My calcium is being kept up anyways since there is a lot of that in Tums and Rolaids. I sometimes have to eat a half slice of bread with some butter or marg. on it to keep the indigestion away. Whatever works I do.
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No, I never have tried it. Know very little about it. Seems like I should see what it is all about and if it is a possible thing I could use. Am doing well with the home system and portable unit I have (Inogen One) so never thought any more about it.
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Hi Kim. Yes. I do use supplemental oxygen 24/7 and at 2 l. setting. If I go walking I need to turn it up to 3l. My main problem with the hose is that I keep getting it tangled up and had to keep untwisting it. However, one kind individual suggested that I find the joiners that swivel and that has made life so much easier. My oxygen provider had them in stock. I find the floor sweeping to be particularly annoying as the hose just ‘has’ to be where the pile of dust/dirt is. Also the hose is getting caught on the strangest things. I know I need to adjust my ways of doing things, but I unfortunately forget until -oops, too late, tangled up again. Having a sense of humor is a good things. Luckily I have a great portable unit – Inogen One and it has made life so much easier to cope and get around with. I have a 2 battery pack and that allows me 9 hrs on 2l. However, on 3l it is less, of course. The freedom to move outdoors and out of our suite is wonderful.
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Hi Charlene. I will give the DuTerra a try for sure. Like to be pain free when and if I can. Thanks.
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Hi to Chrisine Bruyere. I read with interest that you were diagnosed with PF 10 yrs. ago. I had never heard of it until last year when I was diagnosed. It seems to me that you have managed fairly well over the past while until your recent problem with the CPAP machine. We have a friend who was diagnosed with a fibrosing of his lungs who also has sleep Apnea. He does use the CPAP machine and is very much helped by it. It just goes to show us that each one of us is different and this illness is very individual. However, he is on oxygen at 4 l pm for 24/7 which he is able to connect to the CPAP machine and it helps a lot. I also have to use oxygen for 24/7 but mine is on 2 l. I just wanted to let you know that we are thinking of your and your problems and hope you are able to get to a stable place again and that you are not too discouraged. My aching joints and muscles were what kept me going to the doctor to find out the reason for the pain and weakness. Finally, after my oxygen dropped to 69 and then 72 next morning, I ended up in emergency and from then on have been on this ‘Hose to Nose’ club. Still have muscle cramping and pain at times even though on oxygen. I know I need to remember to breath through my nose rather than my mouth to help the oxygen.
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Hi Charlene, I have enjoyed reading your and other participants views re CBD oil. I was told to take 20 drops under my tongue twice a day and that is what I did. As I mentioned I did find it helped me, but was told to not use it as my lungs may become too relaxed. I am wondering if I was taking too much to begin with? I read that Chuck was going to try 1 gram or just one or two drops. I maybe should have tried a smaller dose??? Wonder??? Anyway, let us know Chuck how you make out with it and if it does indeed help you. I am willing to try it again. It does seem to help many so possibly I started with too big a dose at first. Who knows.
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It’s me again Charlene, Sorry I didn’t complete my answer re when the pain occurs. My muscles do not like me to do any amount of walking as that starts the pain in the hips area and if I stand for a while my back now aches as well. It appears that my muscles are not receiving the amount of oxygen required to allow them to work and they send messages that I am not receiving the amount of oxygen they need. I have begun turning my flow rate up to 3 and sometimes 4, but only for the short time I am walking or standing. That does help considerably and so far haven’t needed the topical cream. That may be next, who knows really.
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Hi Charlene, re the topical creams to relieve pain from sore muscles and cramping…I have used Voltaren when I had a fall and that really helped my sore muscles (also ribs as I managed to land on my portable oxygenator! – yeah, I know very clumsy). I had not used it prior to this winter but I found it comforting and took away the pain to allow me to rest. Like you I am not sure what is IPF and what is sore from something else.
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Hi Charlene. I have tried it. It made me feel very peaceful and relaxed. However, my friend who is in the medical field, has stated that I need my lungs to be tough and also ready to fight – not relaxed. Hope you have better luck with it. As I said, I did feel really good, but coughed a lot and was somewhat short of breath and puffing more. So, guess I can’t use it.
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I have been having some (actually a lot) of muscle pain and some cramping. I asked my Dr. re this and he didn’t give me an answer. It is so nice to know that I’m not the only one. The reason I believe is that the muscles don’t receive enough oxygen and then they begin to ache until the build up of oxygen reaches them. Or, until the pain relief kicks in. This may also be the reason my back aches when I stand for too long a period.
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Hello, from Joyce. I haven’t tried to clean litter boxes since I have been diagnosed with IPF, but I know I would find it difficult. The odor cuts my breath quite badly and though I didn’t find the dust a problem, I have not done any cleaning for about 2 years. I was diagnosed a year ago this May. However, I know that I did have issues that weren’t being diagnosed or paid attention to before that, so possibly that was the beginning for me and I did not know. Enjoy your indoor furbabies. They are special.
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Hi Charlene; I am still keeping it at 4 x a day until 2 wks are past then will taper off. If I find the breath isn’t as easy to take with it only 3 x or back to 2 x then I’ll return to 4. I was given an ‘OptiChamber Diamond’ RESPIRONICS FROM Phillips that you fit the inhaler into one end, shake the inhaler & chamber unit, then uncap the other end and breath in slowly and try not to have it whistle. It is a good unit to keep from gasping for the inhaler contents as we try to recover all of the contents in the chamber. I have found it to be a useful tool. I use it at rising and at bedtime.
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Hello Charlene. I have been using Inhalers for the past year. Two different ones….Atrovent (green cap) and Symbicort turbuhaler. I had a bad cough for about 4 wks and it wouldn’t clear up. My Dr. prescribed an anti-biotic and that helped but the cough still remained. He then ordered me to use the inhaler ‘Atrovent’ 4 times a day rather than 2. The cough cleared up in 2 days. What a great feeling that was!
I have also tried 3 days of CBD Oil drops from CTFO. My son sent it to me. Sounded like a good idea to try it. I did feel quite good after a couple of days – less stress, anxiety and unwell feeling…However, my breathing was not helping keep up with my needs and had to increase my air flow through the oxygenator from 2 to 3 and up to 4. I wondered if it was the using CBD Oil that had caused the good feelings but the bad breathing from the lungs. Stopped the oil and 2 days later am breathing much easier and so far no anxiety so hopefully that will be a leftover that I can handle. I guess I am unable to use the CBD Oil.
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Hi Shaw. I also was very nervous about starting the Esbriet since my Dr. had told me it would give some people stomach issues, and having to be careful to coverup with sun tan lotion on uncovered skin out in the sun. However, I was also bound and determined that I was going to take this medication as it was the only one recommended for my IPF. I was told that I had an advanced case so a transplant was not a possibility. SO, I needed the Esbriet. I went on the routine of building up tolerance and I have been very well with it. Yes, at times there was a bit of nausea at first, but I just took a rolaids or tums and it took care of it. I found that I needed to get quite a bit of food down before I took the first pill (I take 3 at each meal) so that it didn’t stick part way down and seem to stop all the rest of the food from going down. I also did try to take the pill with the moist food and not with water/juice or tea. That stopped the pills from sticking. I have actually had to take all 3 pills with a buttered bun or toast very close together when I was dumb enough to forget to take them. Boy that is stupid, but I have learned. I have been on it since June 1, 2017 and have had no real problems. I find I feel somewhat better and that I haven’t become worse so I feel it is doing it’s job. Good luck to you and best wishes. Joyce
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Hello Charlene. I grew up on a farm in the 40 and 50’s. Then I moved to the city to work and have lived in that environment for several years, returning to the farm again in the mid 70’s. We lived on the farm for 35 years finally retiring into the city in 2001. I didn’t notice any environmental problems or have any breathing difficulties until about mid 2000s. Since 2001 we have lived in a city, on the Canadian prairies and there is very little air pollution in our area. Farmers surround the city, of course, and almost all of them use chemical sprays for their crops which no doubt pollutes the air, but it is not really noticeable to us unless we have allergies (which I don’t have). There is so little known about some of the causes of IPF that it is always good to think of all possibilities. I have no idea of my cause. Yes, I smoked for 20+ years but have been a non-smoker for 31 yrs so the Dr. feels my lungs would have recovered. Also just read this morning that dental workers/dentists have an above average for contracting the disease. That is scary. I have never seen one without a mask, so was surprised. Love the information that I find and thanks for all you do. Joyce D.