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Ok, so this breathing thing..........sometimes it makes you wonder if its a little overrated.

So for those that are unaware, I fought to get admitted to the hospital towards the end of June and I was discharged about five days later and I was sent home on oxygen because I cannot breath properly. Leave it to me to mess up something that you would think is straight forward and easy. I am on 4L 24/7. My new toy sits in the living room with about 50 feet of tubing attached and strung thru out the house. My cat leaves the tubing alone, however, my daughters cat thinks that it is her own personal play toy. There are so many people in the house to begin with and then all the visitors that come and go means that there are alot of people that step, trip and who knows what to my tubing. Then there is that whole "open flame" and "flammable" thing. This is/was a house of smokers.........yikes. Add in the fact that I also LOVE to cook with my gas stove and well, I cannot do that right now either. This Lupus thing is getting rather nasty. It continues to steal things from me. Greedy little burger.

While this whole new experience has definately slowed me down, it hasn't stopped me......yet. If I want to go and do something I do have to plan ahead a little more than I normally would and I DO have to make notes. Now when I leave to go run errands do I have to take all my normal gear but now I have to remember to grab extra portable oxygen tanks and bags and that tool thingy, but I have to still remember to make sure I have the diaper bag, a stroller and what ever else I have to take. I am exhausted just to get to the car. I have been waiting for my husband to get home and then he goes with me so I have an extra pair of hands. Sunday we went to St Louis for the day and I swear it took us an hour just to get the truck loaded. I have to go to St Louis again tomorrow so I had to go and exchange my oxygen tanks so that I had enough to get down and back.

Oh well, I guess things could be worse. I see my Pulmonologist on the 16th. I have a chest xray as well as a PFT that day, that should tell us what the plans are from there. I then see my Rheumy on the 20th to discuss Cytoxin and who knows what else. Oh well, just another day in the neighborhood. Things could be worse.


Nancy
 

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Hi Nancy,

Yes breathing is good! Definitely not overrated....

I'm sorry I don't know your history, but I do hope that they find someway to help out your breathing other than carrying an oxygen tank around. But it seems to be one of those necessary evils.

While it is a nuisance to do, it's great that you are still going out and doing stuff. Being locked up in the house would be horrible. So, get all the help you can and keep on enjoying life to the fullest extent possible. Also, while annoying, I'm sure your daughter's cat is as cute as can be. They love new "toys"!

Hang in there. I hope this works out for you real soon.

Nutty
 

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Ok, I vote with those who think breathing is good. I strongly suggest you keep doing it, every day if possible.:lol::rotfl:

I wish I had more than a funny line to offer. I hope they get you straightened out soon and help you breathe on your on soon. We don't want you getting frustrated and cooking with gas while breathing. Neither do your neighbors. :wink2:

Take care,
Sunny
 

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Hey Nancy,

Oh yes! Breathing is definitely overrated! I think you have a point there~! :p

Hope the pulmonology and rheumatology appointments go well and that things start looking up for you very very soon :grouphug2:

:flowery:

Zoi
 

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In my book, breathing is definitely good.......unless you live near a hog farm on a 90 degree day with no AC:eek:, then it's something altogether different:faint:
I hope the Dr. is able to come up with a plan to get you free of all the equipment before too long. It is no fun feeling like a pack mule every time you want to go somewhere:sad:. Sending you good vibes for the 16th.
 

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:grhug: Nancy, I'm so sorry to hear the problems that you are going thru!! Is there a chance that your pulmonary status can improve? Plus, I'm sure the stress you are under doesn't help either! My thoughts and prayers are with you! Yes, lupus does s---! Cathy
 

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Dear Nancy

Oh my gosh im so sorry you are stilll having to use that machine and was hoping you would be done with it by now grrr.yes breathing is omprtant for sure.I cannot imagine knowing the size of your family already then to have to bring all the other stuff for family and the machine for you and oxygen((((((((hugs))))))))).I am so praying for you young lady and hope soon to see a post that you are doing better and not having to use the breathing machine.Take care and try not to overdue it if it is possible.Please keep us posted about how you are doing.

Tammy
 

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Nancy,:hug:
I know I appreciate being able to breathe!!! I am glad though that you are not letting this get you down. You do have a large family and very full house, but that is a great thing:) More people to help around, so you don't overdo it. I am sorry about the cooking though because I know that is your joy. You will work out something I am sure. Please let us know what your test results say.


Hugs,
Becca
 
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