Hi
At the moment i`m exhausted but not in pain. I had hits with a couple of min in between at the most. The O2 company delivers O2 once a week. I had two 20l bottles and 4 3l bottles. I spend 29 l yesterday and i was empty, it was in the middle of the day so that didn`t work out well since i planned to do seeds i the evening. Decided to go to ER and get some O2 from them. I called and they told me it was ok. It was not ok when i came there, and the poor doc who helped me got really frustrated. He ended up standing on his toes yelling in the phone. He couldn`t believe how it could be this hard to get me some bottles to bring home, as i couldn`t be in the ER all day and night hooked to the O2 bottles there, he actually said that to the people he talked to. Also he said "she had this for 8 years, don`t you think she knows this condition and what to do better than you and me? If she says no to Morphine and want O2 we will get it for her". I started laughing cause he got so pissed!! Looking at me he said "your laughing but i`m crying". I told him i think i cried my share when it comes to dealing with doctors. He actually managed to get me bottles to bring home. This is how he did it, he said "well, then i have to bring her in neuro, then you have to take responsebility, cause Cluster goes under Neuro, so deal with it. She`s coming now. I was like "ok..... I don`t want to be hospitalized at all, i just want O2".
Thinking that ok i do need O2 i will just have to go up there and try to make them give it to me. When i came to Neuro i had bottles waiting for me, lol!!! "Take them and go home" they said!! "ALRIGHT"!!
Thank you doc!!
SO!! Ready for seeds tonight. :) :)
I can`t believe how i push this all the time, why can`t i just do the seeds once a month and get over it? Well, it is the fact that i feel it is stopping my daily activities, it feels like "oh no, not again. I just have to do this and that first". That`s a great thing, it tells that i do so well and CH doesn`t stop me from living anymore. Cause before it was what i had to do all the time just to be able to do ANYTHING. So this is a beautiful reminder, i do not take all my daily activities for granted. I love just to go grocery shop. Cause i can!! And i love being able to work out the way i been now, i feel so good!!
I`m exhausted and happy cause i will never give up my normal life and i know everything is better tomorrow :)
Try to carry a 20l tank when you got sore muscles all over your entire body. And if you find out how to do it, please call me!! LOL :)
At the moment i`m exhausted but not in pain. I had hits with a couple of min in between at the most. The O2 company delivers O2 once a week. I had two 20l bottles and 4 3l bottles. I spend 29 l yesterday and i was empty, it was in the middle of the day so that didn`t work out well since i planned to do seeds i the evening. Decided to go to ER and get some O2 from them. I called and they told me it was ok. It was not ok when i came there, and the poor doc who helped me got really frustrated. He ended up standing on his toes yelling in the phone. He couldn`t believe how it could be this hard to get me some bottles to bring home, as i couldn`t be in the ER all day and night hooked to the O2 bottles there, he actually said that to the people he talked to. Also he said "she had this for 8 years, don`t you think she knows this condition and what to do better than you and me? If she says no to Morphine and want O2 we will get it for her". I started laughing cause he got so pissed!! Looking at me he said "your laughing but i`m crying". I told him i think i cried my share when it comes to dealing with doctors. He actually managed to get me bottles to bring home. This is how he did it, he said "well, then i have to bring her in neuro, then you have to take responsebility, cause Cluster goes under Neuro, so deal with it. She`s coming now. I was like "ok..... I don`t want to be hospitalized at all, i just want O2".
Thinking that ok i do need O2 i will just have to go up there and try to make them give it to me. When i came to Neuro i had bottles waiting for me, lol!!! "Take them and go home" they said!! "ALRIGHT"!!
Thank you doc!!
SO!! Ready for seeds tonight. :) :)
I can`t believe how i push this all the time, why can`t i just do the seeds once a month and get over it? Well, it is the fact that i feel it is stopping my daily activities, it feels like "oh no, not again. I just have to do this and that first". That`s a great thing, it tells that i do so well and CH doesn`t stop me from living anymore. Cause before it was what i had to do all the time just to be able to do ANYTHING. So this is a beautiful reminder, i do not take all my daily activities for granted. I love just to go grocery shop. Cause i can!! And i love being able to work out the way i been now, i feel so good!!
I`m exhausted and happy cause i will never give up my normal life and i know everything is better tomorrow :)
Try to carry a 20l tank when you got sore muscles all over your entire body. And if you find out how to do it, please call me!! LOL :)
 |
| Does this look like a Owl to you? |
The sun'll come out
Tomorrow
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're always
A day
A way!
Tomorrow
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're always
A day
A way!
CU tomorrow :)
Tingeling
Sorry the stupid beast came back a knockin' :^(
ReplyDeleteBut glad you encountered such a good ER doc!
And yes that does look like an owl. LOL. :^)