Just a quick note to get some stuff off my chest.
Good news is that I got my appointment with the ILD specialist and it is earlier than I expected (Oct instead of Nov). Hopefully I'll have some answers then. Just from the work up, I know already that she is going to be thorough. I have to go for blood work - tests I've never heard of before and there is one that the lab tech probably won't have heard of either. I also have to fill out a food diary as well as the usual list of medications, etc. Also, there will be a 30 to 60 min phone interview prior to the appointment which itself will take about 3 to 4 hours! Wow!!
The smoke from the B.C. fires has been weighing heavily on my ability to get out and do anything. Apparently on at least one day recently, the pollution index for Edmonton was as bad as that in China. They are forecasting rain in B.C. in the next few days so hopefully that will help settle the smoke.
I was going to go for a road trip. Was thinking of going to Ontario and the Great Lakes as I really want to go to the ocean but with the smoke, going west isn't a good idea. The Great Lakes, I figured would be a good option. I then decided that for my first trip with the oxygen, I wanted someone to come with me in case I needed help with something. Then I'd have a better idea of what I need to know to travel with the tanks and could strike out on my own. Couldn't find anyone to come with me so that idea was quashed. Then I decided that I would head out to MJ to see ME and maybe we could do a short trip from there. Not happening, at least not this weekend, as the smoke is thick there as well. Here the AC keeps the smoke out of the house for the most part and ME doesn't have AC so I decided to wait out the smoke here. Very disappointing that I had to cancel. I'm going stir crazy stuck here in the house!
I haven't been in a very good place mentally lately. Trying to wrap my mind around needing oxygen has been a tough one. It seems that every time I turn around, I'm coming up against something that I used to be able to do without batting an eye, that now I either can't do by myself or have to figure out a new way to do it. One of these things is my love of road trips by the seat of my pants. I love to go on a trip with a general direction in mind but how I get there (and if) all depends on whether I turn left or right at a corner. You never know where you will end up and what you will see on trips like this. Hotels are chosen at random and the stay may be one night or more if I like the area. No more can I do this kind of trip. Now I need to ensure that I know where the closest oxygen supplier is and can only go as far as what oxygen I have in the car. I suppose I could still choose hotels at random but if I know when and where I'll be on a specific day, I may as well pre-book so I can get a cheaper deal.
I recently read an article by a Dr. about transition periods for those with lung disease. He explained that there are 4 big transition periods for the person diagnosed with a disease. The first one comes with diagnoses, the second comes when oxygen is needed for exertion, the third is when oxygen is needed 24/7 and finally the fourth is when the oxygen needs become such that high flow is needed.
This totally makes sense to me. For example, when I was first diagnosed with the disease, I googled the heck out of it and was terrified by the results of my searching. After a while, I settled into a form of acceptance and got on with my life. Now that I'm on oxygen for exertion, I have to learn how to do things like travel in the car from point a to point b, how not to get the tubing twisted around things in the house, and the like. That part is, although a pain, something I can eventually adjust to (at least I hope so). The hard part is the loss of independence and the fear. I'm afraid to go out because I don't want to run out of oxygen while out, afraid that I will have one of my shortness of breath episodes in public, afraid (to a small amount) of what other's think of this old woman with the oxygen tank in tow. Loss of independence covers the gamut of needing help to get groceries. needing help around the house and the loss of the ability to pick up and go whenever I want. Some of this loss of independence is due to the fears previously mentioned but most of it is because I have no strength to do some stuff and other stuff makes me so short of breath it's scary. I can't imagine what it will be like when the third transition comes - I won't even contemplate it - I am having a hard enough time trying to get through this transition! As to the fourth, I'm not even sure what it is. If you are interested, here is the link to the article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6045697/ Reading this made me feel like I'm not alone and others have had/are having the same difficulties as I am. I just wish I'd had a Dr. like him from the start.
Well, my short note turned out a bit longer than planned. It was just going to be a whine session but I added some education for you as well. Thanks for listening.
Toodle-oo til next time.
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