It's snowing! Been pretty idol all day as in playing video games. Triggered a coughing fit watching Grandma let Dog Dog out. I can not have contact with her but she is SO happy it's snowing. Me and Rube's we hibernate. Snow makes me awfully dizzy so I figured I'd start preparing for my trip with the bestie.
I am sure the hotel thinks I am crazy! I did research on the area and ALL the hotels I was looking at before I made my decisions and of course I called a few places. The place we are staying at according to the reviews it has a basement. Evidently they do not have one, they of course you have to request a fridge for the IVs. The place I really wanted to stay that looked so amazing and was only in that area, well it had "beds infested with bugs." Which turned me away very fast! Last thing we need to do is come home with bed bugs... Then another one had a moldy perfume smell to it. Needless to say there has been a LOT of thought going into these trip.
I am nervous to go up there, I learned recently that fog makes it impossible to breathe and make me super dizzy. I live close to cost so, I am use to sea level atmosphere. So a few questions come up that currently can't be answered. Will the different location affect my POTS? Different atmosphere, less oxygen, different elevation... I've read it can affect but not sure. But otherwise I am SO going to enjoy my trip!!
I also had a trip to a local university. If you follow me on facebook I am sure you seen a few post about it. Wonder Woman as yall know is a nurse, she's also an instructor and allowed me to talk to her class! I for see many wonderful nurses in the future. I was able to talk to them about POTS and how some patients differ from the norm. I also got to talk to them about my life and my experiences with nurse at hospitals. I have some off beat and wonderful experiences in the hospital. I am so thankful the students were very interactive and made me feel very welcome.
They got to listen to all my crazy stories about my life in the hospital. What I have been through the good the bad and the ugly. Wonder Woman also spoke on the importance of allergens in medicine and in many other places in the hospital.
I am truly blessed to have spoke to future nurses. Looking forward to going back to. Dr. Dean wants me to set up an power point for the next time I go in.
I guess I should be off here for a bit,
Love Yall
~Poppet
Friday, January 25, 2013
Saturday, January 19, 2013
All In Your Head
Recently I was in a car accident. Nothing serious just someone ran into the back of me at a stop light. So of course I had to get my truck fixed. My bumper was dented, hanging off, and my truck was driving weird. So I take it in and told the guy Hey it was running weird, it feels like my breaks are sleeping. I had someone drive it and talk 2 different smart people about this, and the cop told me to get the under neath checked out anyways. The guy looked at me and was like its more then like OK most people think there is more wrong then what is there when they get in a car accident. Its in their heads and nothing is really wrong. My look said it all, he goes I will drive it to make sure but pretty sure its OK. This hit a nerve in me... Why? Because I heard this for two years before I got a true diagnosis of POTS. I got my truck back this past week, I missed my baby, however not the point of this blog. You know what the guy said when I got my girl back? (yes i am one those lol) There was something wrong, we had to align your breaks enough to make it drive able. Of course my look said it all again...
I do a lot of research in my spare time, since I am still not cleared to work and bearly have school clearance. All of us have the same complaint. We hear all to often that is all on our head and there is nothing really wrong with us. We are psych patients, and we need to get help their. Yes some POTS patients have anxiety attacks but its not due to stress of every day life it has to do with norepinephrine not being reabsorbed properly. So its physilogical problem not an emotional problem. Or, there IS something wrong. I know I personally have an altered EKG. Due to bad lungs, I am more likely to have issues with my heart. And when I am sick i can be symptomatic and a HR of 110, instead of 150 which was AWFUL. But even then those doctors were telling me nothing was wrong, thankful then I was daignosed and Momma knew the nurses in the ICU and got to tell them what needs to be done. Yes even after we are diagnosed under care of doctors the question still comes up "Are you sure its POTS and your not just crazy?" Yes please say this to me while I am a high dose of steroids... :-D!
I also remember, my PCP knowing what POTS is told me because other patients she cares for is not as sick I am, that i must be crazy and if i continue with my treatment i'd die. I of course tell her off walk out of her office call my Momma and Mrs Angie (my then home health nurse) and they set the doctor strait very fast. The last thing anyone wants to hear is that they are going to die espically when that is SO unlikely and comepltely unheard of. I did hours of research to make sure I was not going to die. Turns out of course I am not but she also suggested that I need to see mental health. All the time I had 2 doctors, I really need to get a team name for Supermans group of doctors, telling me it really is POTS.
Really its NOT all is the POTS patients head. It's about getting doctors that understand what dysautonomia is. Which sometimes is harder then anything else. I am very nervous to meet my Doc at the university because what is she doesn't know what dysautnomia is and i have to sit and go through the fight all over even though I am just up there for my blood clotting issues. However I will enjoy my time up there.
Till next time,
Love yall
Poppet~
I do a lot of research in my spare time, since I am still not cleared to work and bearly have school clearance. All of us have the same complaint. We hear all to often that is all on our head and there is nothing really wrong with us. We are psych patients, and we need to get help their. Yes some POTS patients have anxiety attacks but its not due to stress of every day life it has to do with norepinephrine not being reabsorbed properly. So its physilogical problem not an emotional problem. Or, there IS something wrong. I know I personally have an altered EKG. Due to bad lungs, I am more likely to have issues with my heart. And when I am sick i can be symptomatic and a HR of 110, instead of 150 which was AWFUL. But even then those doctors were telling me nothing was wrong, thankful then I was daignosed and Momma knew the nurses in the ICU and got to tell them what needs to be done. Yes even after we are diagnosed under care of doctors the question still comes up "Are you sure its POTS and your not just crazy?" Yes please say this to me while I am a high dose of steroids... :-D!
I also remember, my PCP knowing what POTS is told me because other patients she cares for is not as sick I am, that i must be crazy and if i continue with my treatment i'd die. I of course tell her off walk out of her office call my Momma and Mrs Angie (my then home health nurse) and they set the doctor strait very fast. The last thing anyone wants to hear is that they are going to die espically when that is SO unlikely and comepltely unheard of. I did hours of research to make sure I was not going to die. Turns out of course I am not but she also suggested that I need to see mental health. All the time I had 2 doctors, I really need to get a team name for Supermans group of doctors, telling me it really is POTS.
Really its NOT all is the POTS patients head. It's about getting doctors that understand what dysautonomia is. Which sometimes is harder then anything else. I am very nervous to meet my Doc at the university because what is she doesn't know what dysautnomia is and i have to sit and go through the fight all over even though I am just up there for my blood clotting issues. However I will enjoy my time up there.
Till next time,
Love yall
Poppet~
Tuesday, January 8, 2013
Little Update
Yes I know it's been awhile... What can I say... Other then i've been busy busy and I have a super short attention span. I don't even know where to being at this point.
Not to long ago I found out I was going to a teaching hospital (sadly its not Duke) and before I even had the chance to enlist a person to accompany me the bestie offered to go with me! Which made me and Wonder Woman feel so much better. She is always super busy at work and then she has me, and it's the not so smart to let me go on a road trip by myself. AND this is my FIRST road trip fully diagnosed with POTS and on treatment for POTS, oh and I have a TON of allergies and my heart doesn't alway behave itself. This is also my first road trip with her so it's going to be so much fun! I think she's going to have a car full of medical equipment but that is ok! Then we also have to find a hotel that does NOT allow smoking in rooms what so ever, and a safe place to eat which is next to impossible. I have so many allergies!
I have also learned that when placing abeslom (my central line) at an angle so its not under my arm kinks the line and you can't get a return (get blood off it). We really seriously thought something was wrong with it and we need to get it fixed, which means replacing the tube. But Wonder Woman as always works a miracle and we can a return off of it. Which was a huge sigh of relief. I do not like relying on people every moment of the day. I am fully capable of caring for myself. But limit use of your right hand leads to asking for help!
If you follow me I'm sure you know I have the worse lungs ever. My lungs have finally been deemed stable! yes!!! as long as i stay away from triggers which I am pretty good at doing. Some times its harder then other but hey as long as I am doing better I will do my best to avoid triggers. I don't want to be back in the hospital. As for my heart? Well its been doing OK. It messed up a couple days ago but its been doing OK. Thankfully, there are days it makes me so tired cause it gets so fast but then I just lay down with the kitten. Its really just my POTS acting up and there's nothing we can do with it cause of the asthma. I'm not going to complain though especially when I actually do have good days. :-). I can also handle the rapid heart rate as long as it doesn't go over 130!
I guess I best get off here and go bug wonder woman. She did just get me the cutest skull shirt! :-D
Love yall!!
Poppet~
Not to long ago I found out I was going to a teaching hospital (sadly its not Duke) and before I even had the chance to enlist a person to accompany me the bestie offered to go with me! Which made me and Wonder Woman feel so much better. She is always super busy at work and then she has me, and it's the not so smart to let me go on a road trip by myself. AND this is my FIRST road trip fully diagnosed with POTS and on treatment for POTS, oh and I have a TON of allergies and my heart doesn't alway behave itself. This is also my first road trip with her so it's going to be so much fun! I think she's going to have a car full of medical equipment but that is ok! Then we also have to find a hotel that does NOT allow smoking in rooms what so ever, and a safe place to eat which is next to impossible. I have so many allergies!
I have also learned that when placing abeslom (my central line) at an angle so its not under my arm kinks the line and you can't get a return (get blood off it). We really seriously thought something was wrong with it and we need to get it fixed, which means replacing the tube. But Wonder Woman as always works a miracle and we can a return off of it. Which was a huge sigh of relief. I do not like relying on people every moment of the day. I am fully capable of caring for myself. But limit use of your right hand leads to asking for help!
If you follow me I'm sure you know I have the worse lungs ever. My lungs have finally been deemed stable! yes!!! as long as i stay away from triggers which I am pretty good at doing. Some times its harder then other but hey as long as I am doing better I will do my best to avoid triggers. I don't want to be back in the hospital. As for my heart? Well its been doing OK. It messed up a couple days ago but its been doing OK. Thankfully, there are days it makes me so tired cause it gets so fast but then I just lay down with the kitten. Its really just my POTS acting up and there's nothing we can do with it cause of the asthma. I'm not going to complain though especially when I actually do have good days. :-). I can also handle the rapid heart rate as long as it doesn't go over 130!
I guess I best get off here and go bug wonder woman. She did just get me the cutest skull shirt! :-D
Love yall!!
Poppet~
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