Hi Laura. I’m so glad you reached out to me. I’m also new to this terrible disease. I don’t have severe scarring, but just enough to make me miserable. I also have asthma. I just joined the breathers club in my hospital. My husband has been wonderful in caring for me, but it feels good to be with people in the same boat. The worst thing I did was look it up on the internet. I cried for a week, and lost an immediate 5 pounds. The doctor me I’m not dying so I stopped crying, but I’m still a wreck. Please keep in touch. Eleanore
Hi Charlene. The more the merrier. You know misery loves company. All kidding aside, I saw my daughter today and she was the one who turned me onto this news letter. She was so glad to hear that you reached out to me. She knows the importance of having someone to talk to with the same disease. Keep in touch. Take care, Eleanore
Thanks for getting back to me. It is good to have conversations with people who share the same disease. It’s a tough one. Learning to live with this has been life changing. Thank God my family and friends have been very supportive. Especially my husband. He’s a nervous wreck, especially at first. But things have calmed and we still do a lot of socializing and doing what we like to do. I’ll slow down when I have to. Well, take. Keep in touch. Eleanore
Thank you for getting in touch – it is lovely to hear from you, as always. I completely agree about the importance of being able to connect with others who are living with IPF. I’m really happy to hear your friends and family have been supportive, including your husband. It can be a lot to learn for those caring for us, isn’t it? I hope he is getting support too. Take care of one another and feel free to write anytime!
Good morning! Do you have trouble sleeping? Between my RA joint pain and my coughing I rarely sleep more than an hour at a time, so I never really feel that I’ve had a good night’s sleep. I don’t like feeling exhausted all the time, and being behind on household chores. I won’t even let anyone in my apartment because I’m embarrassed by how much clutter is everywhere. Some mornings if I have some energy and ambition I start cleaning but get short of breath and have to rest. Consequently nothing gets finished and I get discouraged. Light housework isn’t too bad, but vacuuming and carrying laundry downstairs to my car. (I don’t have a washer and dryer so have to go to a friend’s house or my daughter’s to do my laundry. Fortunately I have more clothes than you can imagine, so I can go several weeks before having to do it! I need to get better at time management, so if you have any suggestions I would really appreciate it. Also, how do I deal with family and friends who don’t understand why I’m so tired or have to cancel plans because of the fatigue?
Hi Laura. Sounds like you are really having a rough time. As far as housework, I finally threw in the towel and got a cleaning lady. Such a big help. I have a pretty big house, not huge, but 10 small rooms. I would clean one room and sit down exhausted. One time I gave my bathroom a good cleaning and slept for about 2 hours afterwards. It stinks to be like this. Look to see if you have a Breathers Club in your area. Mine is in my hospital. It’s for copd but all lung diseases are welcome. It’s so nice to have people who understand what you’re going through. Your family and friends will catch on eventually. Mine have. One night we were at a huge dinner and all of a sudden I couldn’t breathe. We had to leave. It was then when I said I can only do what I’m up to. People don’t like it, too bad. At this stage you have to worry about yourself because you are the only one who knows how you truly feel. That’s it for now. Please keep in touch. Eleanore
Good morning! Thank you for sharing your thoughts! It helps to know that there are people out there who understand the challenges that come with this disease. I’m super tired today so I’m going to try to take a nap . Hopefully I’ll feel more energetic when I get up. I’ll let you know!
Good morning Laura. Hope you’re having a better day. I feel a little crummy today. I hate that I never know how I’m going to feel when I wake up. Usually it’s crummy. The winter is killing me. I guess our feeling wonderful days are over. Having the flu two weeks ago hasn’t helped. My cough is so annoying. My son can’t believe that I’m not in pain when I cough. It’s just non stop sometimes. Enough about me. How did you feel yesterday after your nap? Are you on meds or oxygen? The only thing I have is Brio for my asthma and ventolin rescue inhaler. They seem to be watching the IPF to see if it gets worse. I know it’s not going to get better. I was always such a healthy person, it’s hard for me to accept what is happening now. How long have you had IPF? I was diagnosed in October. That’s it for today. Take care. Eleanore
Hi Eleanore! We seem to have a lot in common. I was just diagnosed in October of 2018 too! Learning to accept the diagnosis has been hard for me too. My pulmonologist is hoping that my rheumatoid arthritis and sarcoidosis are the underlying causes of my Pulmonary Fibrosis. I’m being treated with Cellcept, Breo, and Ventolin inhalers, as well as Singulair, Prednisone, and Flonase. The doctor is hoping that treating the RA and Sarcoidosis with Cellcept and Prednisone we might be able to stop the fibrosis from advancing. He hasn’t done a biopsy yet. I’m not on oxygen yet and haven’t been able to start therapy because I have been sick with sinusitis and bronchitis since Christmas.
I’m not enjoying the winter weather either! I dread going outside because the cold air makes me so short of breath. I know you can relate! I am looking forward to warmer weather so I can walk every day. From what i’ve been reading, exercise is important. The past several winters I spent quite a bit of time in Florida, helping my Mom out. I walked a couple times almost every day and I felt so much better. Mom passed away last August while I was down there. It broke my heart, we were very close. Anyway, this is the first winter that I have stayed in Ohio and I am not handling it well physically or mentally. Enough of my whining! I hope you feel better! I need to brave the cold and run some errands.
Good morning Laura. Just woke up a little while ago. Feel pretty good today. One never knows.!! You’re on so many medications. My doctor is still waiting for some reason. He showed me my cat scan. I have one little spot probably the size of a quarter, but it’s just enough to make me miserable. He wants to have a surgeon biopsy it, but that will means surgery. My underlying problem is either auto immune or I was on macrobid for bladder infections. I was taking it 3x’s a week, and soon after I started with a terrible cough. Who knows. I’m so sorry for the loss of your mom. My mom had Alzheimer’s about 12 years ago. We lost her long before she passed. Enough sadness. Anyway, I’m a jersey girl. Born in New York. I’ve been here for over 40 years. My husband and I are 71. Exercise is very important. I stopped going to the gym because I thought I was dying. I was so depressed. Then my doctor told me to get back to the gym. I take senior classes. It does make me feel better plus I’ve made friends there and to just see them helps too. I’m lucky, my family and friends have been very supportive. I think it might be because I don’t look sick. Who knows. I have to go now. I’m going to get my grandson ready for daycare. He’s 3. The youngest of 7 grandchildren. Have a good day. Eleanore
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