laura-bush
Forum Replies Created
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Hi! The cold damp air definitely makes my symptoms worse. I’ve been feeling awful for about 3 weeks, low grade temp, incessant cough, and chest pain. I went to the doctor last week and had a chest x-ray. As I suspected it is pneumonia. He prescribed Levaquin but I haven’t had any improvement yet so I suspect it may be viral. I am not looking forward to these winter months as I fear that I will be sick the entire season.
Laura
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I was diagnosed with Advanced Pulmonary Fibrosis in October of 2018. I was hospitalized for pneumonia and the chest CT scan showed the fibrosis. My pulmonologist and rheumatologist both feel that the fibrosis was caused by my Sarcoidosis and Rheumatoid arthritis. I had been on Plaquenil and Prednisone but it continued to progress. The next thing we tried was Cellcept and Prednisone, but my condition worsened. Finally, I had two infusions of Rituximab. The breathing tests and chest CT scan will be repeated on Dec. 3rd. I’m praying it has at least stopped the progression of the fibrosis. My symptoms have not improved since the infusions.
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Good morning! I’m flying from Cleveland to Dallas today and although I have never been a nervous flyer, I’m feeling a little anxious this time. I have my mask, pulse oximeter, mucinex and flonase packed in my personal carry on so I should be all set. I’ve been up all night so hopefully I’ll sleep most of the flight! Wish me luck!?????
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Hi Charlene! I don’t know if this is just a coincidence or some divine intervention but when I saw this topic my jaw dropped. The last two days I have been dizzy, wobbly and even fell forward today when I tried to stand up. I wasn’t sure if it was because of the severe sinus headache I have or due to the fibrosis or dehydration or ??? Perhaps it’s a combination or all of the above. I don’t know what to think. I had to cancel an appointment and plans I had with my daughter and grandsons, so I’m upset and sad that my health is controlling my life. I’m praying that tomorrow is a better day!???
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Good morning everyone! After reading all of your comments I can definitely relate to so much of what each of you have said. I am having trouble getting used to being so fatigued, and I think accepting that it is a new way of life is depressing. After one holiday family dinner that my daughter and her husband had prepared and hosted someone yawned and said how tired they were. My daughter concurred and then I said “me too”. My daughter looked up at me and said “from what?”! She didn’t understand why I was tired, as I had not done all the work she had, and that I had a pretty sedentary lifestyle these days. It hurt my feelings initially, but then I realized that she didn’t know that I only get a couple hours of sleep at a time and am up most of the night. She is beginning to understand my limitations, especially when it comes to playing with my 2 and 5 year old grandsons. I’m not on supplemental oxygen yet, but might be after my next doctor appointment in May. I was just diagnosed in October of last year, so we are still new to the ups and downs of this disease. I hate that I often have to change or cancel plans because I don’t feel up to going. Getting dressed and ready to go anywhere causes me to get short of breath. I also have chronic sinusitis and bronchitis so I have not been able to schedule the Pulmonary Rehabilitation program that my doctor prescribed. I’m sure it will help, but with allergy season now upon us I am already having symptoms so an infection is pretty inevitable. For me personally I think that the hardest part of accepting that I do have Advanced Pulmonary Fibrosis is that this is the best I’m going to feel. There’s no chance that it will go away or get better. I am grateful that these forums exist so that we can share our concerns and support one another. Thank you all for your comments!
Laura (A.K.A. Lowe)
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Good morning! I have found that my resting heart rate is usually around 94 now, it used to be about 70. I think our hearts have to work harder for us to breathe. My doctor told me that is also what causes the weight loss. I’ve lost 20 lbs in the past year and a half, and I was thin to begin with.
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Good morning! I’m so glad to see this topic. I have been too embarrassed to admit that I have such a strong fear of taking a shower. My main fear is that I will get light headed and/or lose my balance and fall. I live alone, so if I were to hit my head and lose consciousness, nobody would know that I needed help. I’m not on oxygen yet, but have had falling spells. I would appreciate any suggestions! Thank you! Laura
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Good morning! I was so excited when I saw Natural relief for mucus in the lungs as a topic. Unfortunately I am allergic to fresh pineapple and I don’t think I should try drinking pineapple juice! I hope there are other options! Any other ideas? Thanks, Laura
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Hi Charlene and others! With regards to the CBD oil that I started using, it is called Wild Rogue CBD Tincture, 1000 mg CBD hemp oil. It is a small 30ml bottle. On the bottle it says a “serving” is 0.5ml., so I decided to take half of that amount in the morning and half before I go to bed. I am trying to get more information about it, as it didn’t come with any instructions or recommendations. I was pleasantly surprised to find that it is basically tasteless. As I previously said, it seems to be helping me sleep during the night. I was able to do lots of errands today, and didn’t even need a nap this afternoon! Hopefully I didn’t overdo it today, guess I’ll just have to wait and see. Good night!?
Laura -
Hi, I started using hemp CBD oil this week. I have started with a few drops under my tongue in the morning and at night. It definitely seems to be helping me sleep. I haven’t seen any improvement yet in my joint inflammation and pain, but from what I’ve read it can take a couple weeks before there is any noticeable difference. Being able to sleep better is huge for me. I haven’t enjoyed living feeling exhausted all the time. It made me depressed, anxious and less able to handle all the pain I deal with. So, I’m happy with the results so far and am praying that it will also help reduce my RA pain and inflammation. I also haven’t had the debilitating headaches this week that I was previously experiencing on a daily basis. I still have a headache, but took Tylenol and it’s almost gone completely. I enjoyed reading all the previous posts about this. Thanks for everyone’s input!
Laura
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I just received a small bottle with a dropped of Wild Reyne purified hemp CBS oil from one of my very concerned and thoughtful daughters. I’m not sure how many drops I should start with, or what benefits to hope for. I have read that it helps for pain and anxiety, and inflammation so she is hoping it will help with my Rheumatoid arthritis symptoms. I wasn’t aware it could also help with my pulmonary fibrosis, but would love to learn more about this. Thank you! Laura
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Good morning! I’m trying to be upbeat when I am not really okay. I had the opportunity to spend a couple hours with my grandsons yesterday and had a wonderful time. They are ages 2 and 4, and of course full of energy! We had fun dancing and playing hide and seek, so of course today I feel like I’ve been hit by a truck. As far as self care is concerned, I imagine I’m supposed to take it easy today and rest. I had hoped to do my much over due laundry and some cleaning, but I don’t really feel up to doing anything. I don’t like feeling held back by my conditions. Is this where being “gentle with myself” is the answer? I couldn’t sleep last night because of pain and coughing, and even fell twice because my balance seems off. Fortunately I didn’t get seriously hurt, just a few bruises, and a lot of frustration. I am not on oxygen yet, but I imagine I will be at some point soon. I hope everyone has a good day, I think I will be hanging out on the couch.
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Hi, I’m new to all of this, and was only recently diagnosed with Advanced Pulmonary Fibrosis in October of 2018, while hospitalized for pneumonia. I also have a primary immune deficiency, rheumatoid arthritis, and sarcoidosis, as well as several gastrointestinal issues. The self-care topic is a much needed one for me. I welcome suggestions and advice. I have signed up for pulmonary rehabilitation at our local hospital, but haven’t been able to start due to chronic sinusitis and bronchitis. If I could only get healthy enough to start the program I’d be all set! Thanks for sharing your thoughts!
Laura