[Michelle Lantis-Harms]

I struggle with showering, the humidity sucks my breath away. Doing dishes is another tough one for me, the bending over the sink puts a kink in my lung capacity. My dad got me a stool to sit on which helps. And getting to and from the car for work or any other reason. For work I use a suitcase with wheels. Sounds crazy I know, but I put my extra tank in it and then put my bag with the tank I am using over the handle. Nothing to carry. But it is still a lot of work, lifting it into and out of the car.

[Michelle Lantis-Harms]

I have written down several suggestions from above and look forward to some summer reading! I am a true crime fanatic and have read almost all of Ann Rule’s books. She has also written a few on spirits and ghosts that were quite intriguing. Recently I have started looking more at self help and self healing books. Any suggestions for that genre would be greatly appreciated. Thanks in advance! Happy reading everyone.

[Michelle Lantis-Harms]

I have had to do two of these since my diagnosis 8/17. I asked about supplemental oxygen as I felt I was going to need it. They did one then, and stopped me about less than 1 minute. Took me back to the room for a few minutes on 2 lpm. I made it about 30 feet and they sent me back to the room and decided to start me on 4 lpm when I was moving and 2 lpm sitting. My last test, December 31, 18, She only had me walk about 75 feet and stopped me. She now has me using 4 lpm when moving and no oxygen when I am sitting unless my SPO2 is dropping. She said I am lucky in the fact that I seem to recover quickly when I drop. I just tend to drop to 72 or lower when I go all of a sudden. On my first test, I dropped 11 % in usage  in one year and 4 months. That scared me to death. That is a big percentage. I am not sure how I feel about doing it yet, as I have only had 2. The second one, she had me carry my O2 but keep it off, so I felt like she was getting a pretty accurate reading.

[Michelle Lantis-Harms]

Charlene,

I have been using CBD Oil for the past 3 months and I love it. I am trying to find the right dosage for me to eliminate my lyrica and tramadol as they cause inflammation as well as help with Fibromyalgia and Neuropathy pain. A good friend of mine has lung issues, not yet determined and she has been using the CBD Oil for 6 months now. Our pulmonologist saw her a month ago and asked what she had done different. He told her and I quote, “You were circling the drain the last time I saw you and I really didn’t figure I would ever see you again.” “You have made a huge turn-around, what are you doing?”

She told him that she was using CBD Oil and he was going to start researching it as it had saved her life in his opinion. I feel better on it whether it is helping my lungs remains to be seen. I have to get a chest X-ray soon and go see the doc again to see if it is helping. I have used the spray, water-soluable, candy, and cloud. The cloud you just drop drops under your tongue. We are not allowed to have the THC here in KS, but Missouri does.  My intention is to keep increasing the dosage until I can get off of at least 2 of my medications.

[Michelle Lantis-Harms]

Has anyone tried getting a prescription for an adjustable bed to see if insurance would cover it? It was just a thought as I have seen insurance pay for some pretty odd things. Just throwing that out there.

[Michelle Lantis-Harms]

I first read about the Spoon Theory on a Lupus group I was in. I absolutely love the way it explains chronic illnesses. I also remind myself that if I choose to do an, what for me is, extreme activity such as taking my granddaughter to the zoo, I know have to give myself a lot of downtime afterwards to refill my spoons. Thanks for bringing the Spoon Theory to this group, I never thought about it! Have a great day everyone!!!

[Michelle Lantis-Harms]

My doctor told me to use zertec and flonase to help keep my nasal passages open but I have still occasional problems.

[Michelle Lantis-Harms]

I have almost ordered one about a hundred times but haven’t yet for the fear of what you have experienced. Being on oxygen is stigma enough, I don’t want to add to that. I know I should being insulin dependent diabetic, this, and on oxygen but I can’t seem to get past my fear.

[Michelle Lantis-Harms]

I ordered one from veterens.com I believe it was. I paid $70 for mine. It does all the vitals, times sleep, steps, etc. All of my vitals match almost perfectly except the O2 monitor, which was what I really wanted to work. I kept  mine as it does my steps and everything else works perfectly. I will check into the one from Costco though. Might be worth the investment. Thanks for the information everyone!

[Michelle Lantis-Harms]

Chuck,

I am a lot like you. I HATE to ask for help and when I do, I apologize and agonize for it for days. I think trying to come to terms with the fact that I won’t be able to do some things again without help is the hardest part of this. I have always prided myself of being very independent. I have a loving husband who will move heaven and earth for me if I would allow it, but I struggle to ask him to refill my water, or help with household chores and when he does help, I feel awful because I should be the one doing it. I think we have to come to terms with IPF before we can learn to forgive our selves for the guilt we deal with. The struggle is very real for sure. I think this forum and if they get a support group going (hint, hint :)) is a great place for us to vent and to share your problems without judgement as we are all in the same place. Can’t wait to chat again!

[Michelle Lantis-Harms]

I, too, have had a falling out with the person I thought was my best friend. I have had a LOT of issues hit the past 2 months and she has been unwilling to be there for me in even the most basic ways. She was the first person I told about my diagnosis, even before my husband. I shared everything with her. Everything changed when she found a military support group on facebook. I no longer mattered. This has been like a death for me. My brother and a good friend both had a stroke 3 weeks apart. I have been unable to go visit my friend and have had to step up as care taker for my brother while we struggled to get him into a rehab facility (Thanks Humana). My parents are aging and unable to physically get him to therapy so I was taking him. We finally got him in somewhere for at least 2 weeks, next week we try again. While this was going on, my granddaughter was diagnosed with PANDAS, a rare disorder following strep. I was dealing with all of the stress alone. Last week, I was diagnosed with CHF/Pulmonary Edema, following 2 weeks of chest pain, that wasn’t cardiac. Now I HAVE to put myself first, I know this, but the guilt is killing me. It is so hard not to be the glue that holds us together. I had a meltdown on my daughter for being inconsiderate in showing up unannounced with friends to use the pool. Guilt again. I would love to be able to move past the feelings of guilt over taking care of ME. Any suggestions would be greatly appreciated. THE STRUGGLE IS REAL! 🙂

[Michelle Lantis-Harms]

I live an hour south of Kansas City and 30 minutes from Jayhawk Country in Lawrence. I live in a small town called Pomona, like California, but different. :)I currently receive care in Olathe, KS. And I am not in a support group but would love to find one.

[Michelle Lantis-Harms]

I used to think it was the physical things that were harder. I had a best friend that I shared everything with and could rant for hours with her not being bothered by it at all. We had a falling out for unknown reasons. I tried trusting my sister but that didn’t work out so well. So apparantly she contacted my friend and asked her to please step up to help me. It’s a beginning anyway. My husband is very supportive and attentive at times but he is very scared of IPF and shuts down. He willingly steps up and does household chores when I can’t. We have 4 adult children that are all adopted. 2 of them are mentally handi-capped. The other two both have a lot issues as well. 2 have battled meth several times. Amy, oldest has a 12 year daughter, Angel. Next is Katie, she has 12 Alex and 10 year old Memphis, Joe is next and is married and has Sarah 6. And the youngest is Ray who is engaged. They are all 10 miles away except Ray who is 30 miles away. I just hate asking any of them for help as they all have busy lives as well. Both of my parents are still living but I try to get them to stay focussed on my brother who at 49 had a stroke 2 months ago now. And my best friend lives across the US from me now, in Virginia! After all of this babbling, I think now the emotional part is harder for me as I really feel alone without my bestie to lean on. No one else really “gets” it for me. We shall see. Have a great weekend everyone!

[Michelle Lantis-Harms]

As a type II diabetic, I am very interested in your study. I have been on metformin for over 10 years now and was diagnosed with IPF a year ago. They went back at least 4 years on CT Scans for kidney stones, and determined that I am stable at this time. Very excited to see what you determine. Please keep us posted and feel free to ask if I can be of any assistance.

[Michelle Lantis-Harms]

I just read the article you posted and I am wanting to see if there is anyone anywhere near me that I can get in contact with. I have started researching holistic medicine for IPF. I found an article on yoga breathing that I have started trying to do. If I can find it, I will post it. I have been diagnosed Type II Diabetic for the past 10 years and have been on metformin since diagnosis. I wonder if that is why my IPF has remained stable to date.