As I have always said, it is QUITE difficult to travel with POTS. You have your IVs, all your medications. It's very important you take your medication on time or you can become very ill. I took my salt a couple hours late and I thought I was going to fall over. My BP was that low. Of course there is not much warning. Also if your not well hydrate things can end very badly. Passing out, shortness of breath, eratic heart rate you name it. Then sometimes people like to stare! Ugh. However my stay in SC was not like this at all. OK well sometimes it was BUT 90% it was fabulous.
We went to the Hard Rock Cafe for dinner the first night there (and the following 4 days) I felt so bad for the guy. I sat down and had to take care of my IV (he didn't care) and on top of that I was like OK. I am allergic to seafood (fish and shellfish) and milk. On top of that I can not eat meat, my body can't break it down. I told him i normally ate salads, so he made me a custom salad! It was SO good! He got me a yummy safe strawberry smoothie and i promise he filled my water 5 times! We got the cutest pics there to well me and Wonder Woman! When I figure out how to I will post them lol.
The next day we tried to find a tattoo shop! lol OK the one we got to was shady so we decided to wait until we got home to get one. So we saw a Myrtle Beach Harley outlet!! The ladies in there were some of the nicest people I met. They were so accepting with the IV covers, and they listened to my story and were genuinely concerned and cared. This is unheard of where I am from. Most people stuff up their noses to me. They sat and talked to me and Wonder Woman for a good 30 minutes! I was and am so thankful to them for helping me out, talking to me, and not looking down on my because of this crazy disease!
Then a lovely lady at the build a bear, helped us stuff the bears, and I explained my disease to her to. Not sure how the convo came up but she ended up praying for me and for healing of my disease. She was working there thru her church. She sat and talked to us for a few minutes. They were much busier then Harley but could not be more thankful for her to.
Oh and I can't forget the starbucks girl! I seen her 2 days in a row with an IV over my shoulder. And she didn't ignore me, stare or anything! She talked to us about KISS, Coffee, what its like working in a hotel lobby. It's little things like this that make me smile! The 5 of them were/are angels from God in my eyes. I do believe this and this is why.
For breakfast we went down stares to eat. First there wasn't anything safe to eat at all and no one would help us. So I made Wonder Woman eat while I drank coffee and played on FB. And a waiter came over, didn't ask me what I needed, or if she could help. She stared at my IV and what it was then didn't even talk to me. She avoided me at all cost. Gasp! the girl on the IV is contagious! I came down the next day with out it. More so because I woke up at 6 am to start and not worry with it. She treated me as if I was a different person! The 5 listed above treated me like I was a normal person walking in! I can not be more grateful to the Hard Rock, the Harley Girls, Build a Bear, and Starbucks chick! To yall I am forever grateful!
But I guess I should get off here, and EAT! lol Love me some food!
Love Yall!
~Poppet!
Wednesday, June 26, 2013
Sunday, June 23, 2013
ROAD TRIP
It was hard to update being on the road. You stop late, your to tired to even care about the internet, wake early and on the road! IVs and all. 28 hour trip from el paso to the beach in SC. Drove across the entire state of texas and south carolina. Yes I know improper spelling but I am tired after a long day.
Desert heat is awful! I went out side one day to face time Wonder Woman before she left for Texas. I had NO idea it was 90 outside it felt like it was in 70/80s and dehydrated myself! I fixed it the next day though. The heat is so dry I can feel the mucus stick in my lungs. Its just awful but I had a wonderful time with Beth, Mike and Molly! Molly is the sweetest! Puppy kisses every morning. She walked me to the front desk once. It was a 5 minute walk there and back to get coffee which is OK and the girls LOVE her in there and she' welcome. Yeah... That was a mistake. I was SO messed up from the heat, I had to have some start my saline for me! Which is unheard of for me. But its ok it stabled me, Molly laid across the laptop and we got comfy on the couch!
The beach has been a BLAST! I went out on the beach, and walked a bit, went shopping. There's these fancy girlie stores around here. Yeah... you'll find me in the redneck biker stores! lol. Where else does my heart belong? Oh yes on a crab boat lol.
But really, my POTS has been OK on this trip. I only got sick 3 times in Texas, more so because I do not listen and figured the heat wouldn't flare me up. But it did! But once I got stable and use to the environment I was fine. SC, it has been great here. I was only dizzy one day and that's because i took my one dose of salt way to late. I take salt to keep my blood pressure normal.
Well I am tired and see a bag of chips! :-D So I shall hop off of here and eat!
Love yall
~Poppet
Desert heat is awful! I went out side one day to face time Wonder Woman before she left for Texas. I had NO idea it was 90 outside it felt like it was in 70/80s and dehydrated myself! I fixed it the next day though. The heat is so dry I can feel the mucus stick in my lungs. Its just awful but I had a wonderful time with Beth, Mike and Molly! Molly is the sweetest! Puppy kisses every morning. She walked me to the front desk once. It was a 5 minute walk there and back to get coffee which is OK and the girls LOVE her in there and she' welcome. Yeah... That was a mistake. I was SO messed up from the heat, I had to have some start my saline for me! Which is unheard of for me. But its ok it stabled me, Molly laid across the laptop and we got comfy on the couch!
The beach has been a BLAST! I went out on the beach, and walked a bit, went shopping. There's these fancy girlie stores around here. Yeah... you'll find me in the redneck biker stores! lol. Where else does my heart belong? Oh yes on a crab boat lol.
But really, my POTS has been OK on this trip. I only got sick 3 times in Texas, more so because I do not listen and figured the heat wouldn't flare me up. But it did! But once I got stable and use to the environment I was fine. SC, it has been great here. I was only dizzy one day and that's because i took my one dose of salt way to late. I take salt to keep my blood pressure normal.
Well I am tired and see a bag of chips! :-D So I shall hop off of here and eat!
Love yall
~Poppet
Thursday, June 13, 2013
coffee at 11pm
lol yes thats right at 11pm :-) I sure did need some. I even got a nap today. I am still on VA time and up by like 7. I have been fighting with home health since the 10th (when we hit texas) and they are trying to tell my doctor I do not have insurance when I do. I just lost ONE insurance (i had 2). So Superman was kind enough to just talk to Wonder Woman and she's handle it all on her end. What a crazy life I lead.
I had 3 liters of fluid today, I was doing 2 and my POTS seems OK. It also likes the caffiene in the coffee for some reason it eases the chest pain in me. I get chest pain from have a constant heart rate of 120 or higher. And speaking a lot here, tend to raise my heart rate. I talk to my best friend and Molly the doggie. Oh and we cant forget the endless phone calls to Wonder Woman either. My POTS once again is stable just in time for my lungs to be like. I do not like this air let me fill with mucus :-/ the good thing is i can hang over the side of the couch after a breathing treatment and get puppie kisses while my lungs drain which seems to help out a LOT. I also have access to my steroids (prescribed for this reason) which also tends to help with POTS because of water retention. Though we all know Superman is not human in the comic strip, I am still leaning towards he is not human in real life either. lol He is never wrong. "Your going to have to up your meds in Texas" I am all haha yeah right, its going to be an AC apartment. Yeah well standing in a door way for 5 mins, to let the pup out had me dehydrated i had open my fluids at higher rate to catch up. But over all I still look good! I am maintaining my 87 lbs which means i have not lost any water weight to the point of sever dehydration, or heart rhythyms that get me put in the hospital.
I have only ran into ONE other issue. A 2 hour time difference. I keep telling Wonder Woman "i'll call you right back" and its oh 9 there. I almost texted here now going oh i need you to get my atrovent before you leave. Yeah it would be 1am there and well that would start that panic in her, when its no need to panic at all. It's just crazy lol.
What else am I forgetting... If you follow me you know I have trouble with brusing. They thought it was blood disorder but its vascular and I am not willing to go through more testing its POTS, but I am covered in bruises I have them everywhere my chest, my legs, my arms, and my knees! I look like I have been beat up! I have lines across my legs wear my iPad sits. I think it might be made worse due to heparin solution i am puting in my line who knows though haha
I had 3 liters of fluid today, I was doing 2 and my POTS seems OK. It also likes the caffiene in the coffee for some reason it eases the chest pain in me. I get chest pain from have a constant heart rate of 120 or higher. And speaking a lot here, tend to raise my heart rate. I talk to my best friend and Molly the doggie. Oh and we cant forget the endless phone calls to Wonder Woman either. My POTS once again is stable just in time for my lungs to be like. I do not like this air let me fill with mucus :-/ the good thing is i can hang over the side of the couch after a breathing treatment and get puppie kisses while my lungs drain which seems to help out a LOT. I also have access to my steroids (prescribed for this reason) which also tends to help with POTS because of water retention. Though we all know Superman is not human in the comic strip, I am still leaning towards he is not human in real life either. lol He is never wrong. "Your going to have to up your meds in Texas" I am all haha yeah right, its going to be an AC apartment. Yeah well standing in a door way for 5 mins, to let the pup out had me dehydrated i had open my fluids at higher rate to catch up. But over all I still look good! I am maintaining my 87 lbs which means i have not lost any water weight to the point of sever dehydration, or heart rhythyms that get me put in the hospital.
I have only ran into ONE other issue. A 2 hour time difference. I keep telling Wonder Woman "i'll call you right back" and its oh 9 there. I almost texted here now going oh i need you to get my atrovent before you leave. Yeah it would be 1am there and well that would start that panic in her, when its no need to panic at all. It's just crazy lol.
What else am I forgetting... If you follow me you know I have trouble with brusing. They thought it was blood disorder but its vascular and I am not willing to go through more testing its POTS, but I am covered in bruises I have them everywhere my chest, my legs, my arms, and my knees! I look like I have been beat up! I have lines across my legs wear my iPad sits. I think it might be made worse due to heparin solution i am puting in my line who knows though haha
Wednesday, June 12, 2013
I must say, Texas is an experience! I walk to the front desk daily (which isn't far) to get coffee. They don't have a coffee pot here cause it broke haha but its so worth it the walk because its starbucks and its free lol. So anyways. The walk there I get short of breath but sit down when I get in there. Which is fine I can handle that. That's when its oh only in the 80's then the temp gets to the 100s. I swear the AC runs continusouly. I keep doing what they call a bolus of saline. I am currently running 1 liter bags because home health messed everything up. And I went to let Molly out. I was standing in the front door of the house and had to up my saline for an hour to "wide open" which means it goes in a fast a gravity allows then an hour later i turn it back down. I was only in the door for a couple minutes. It's SO hot. Have you ever been baking something, and had to open the door to check on it and you get an overwhelming amount of heat in your face? Yeah that's the best way to describe it! SO hot. But its so fry my asthma is HAPPY.
I have no idea what I did to my poor lungs because they are filled with mucus. Sorry gross I know. And I have spoken with Superman today, and so has Wonder Woman. But this is so normal for me, that unless its a companied by a fever he will say oh well its OK we really can't do anything about as long as it is moving. But I actually feel OK. In GA, I would walk outside and the air would be so thick I could not take a breath in, in Tx it's so hot my bodies like hahah now we're going to dehydrate you! lol. No its really not funny but there is no happy medium. But please no I am stable, above my base line even. I have succesfully stayed stable every day. I am allowed up to 5 liters of fluid in day, and been stable at 2. I also have been breaking the liter bags up. I do feel odd not connecting 24 hours a day but its a nice feeling at the same time. Knowing I get the same amount of fluid but spread out thru out the day. I also have consumed so much water it's insane. I down bottle after bottle after bottle... you get it haha.
Also traveling with a disease is not as easy as one would thing it is. I actually lost weight through out the trip, it does not show thankfully. I have way to many food allergies so I am limited to what I can eat on the road, which is what I bring from home. I have to travel with ALL medications. Control, rescue, refills. IV bags are not easy to compact either. And i have to change a lot of this on the road. It gets so complex. We made it work.
I'll keep yall updated on how things work out.
Love Yall
Poppet
Monday, June 10, 2013
The journey!
It has been a long 3 days! I wanted to up date daily, but I fully thought I'd be able to have internet at all my locations. That was not how it worked haha but I had a wonderful trip here. We stopped at Beth's family lake house or cabin. It was so wonderful. We drove through the hurricane/tropical storm that was coming up and it beat up my lungs a bit but it was work with able it was nothing serious at all. My POTS was stable as long as i was not focused out side but on a game or a book. Which check out Robin Cook books haha i mean he's AWESOME.
I was decent through alabama and Louisiana to then we hit Texas. I didn't have many problems in Dallas with my POTS/Asthma maybe it was because it was so late when we got there. And we stayed at a very nice hotel (thanks Dad C.) It was very lovely I will try to remember to post pics later. Then about an hour past Dallas... The heat became very dry and not humid. My lungs loved it... My POTS. Oh Gosh, it was like open a 450 oven with your face in it. But it was like stepping into it. I was on my saline, lots of water and an AC care and I was still dehydrating! I would get out of her car and get extremely dizzy and i was in a fog until I got cooled down again. Superman warned me about this so I was prepared. I am starting to think he's a Vulcan and not human. I had very little to eat thru out the trip, well when i was or well beth was driving. Cause of food allergies. :-( I have multiple so its hard to eat out in general. But I am so excited I am here and I am SO tired so I will update more later :-)
Love Yall
~Poppet
I was decent through alabama and Louisiana to then we hit Texas. I didn't have many problems in Dallas with my POTS/Asthma maybe it was because it was so late when we got there. And we stayed at a very nice hotel (thanks Dad C.) It was very lovely I will try to remember to post pics later. Then about an hour past Dallas... The heat became very dry and not humid. My lungs loved it... My POTS. Oh Gosh, it was like open a 450 oven with your face in it. But it was like stepping into it. I was on my saline, lots of water and an AC care and I was still dehydrating! I would get out of her car and get extremely dizzy and i was in a fog until I got cooled down again. Superman warned me about this so I was prepared. I am starting to think he's a Vulcan and not human. I had very little to eat thru out the trip, well when i was or well beth was driving. Cause of food allergies. :-( I have multiple so its hard to eat out in general. But I am so excited I am here and I am SO tired so I will update more later :-)
Love Yall
~Poppet
Monday, June 3, 2013
Vacation!
Please note: I have medical clearance to go on vacation, I am also required to contact my doctor while I am gone. That being said...
I am currently getting ready to take my vacation! Less then a week and I will have my birthday with my best friend!!! Like I did last year except this year I will not be in the hospital, in tears, with nursing sticking up for me. True story lol. Last year for my birthday before 7am and just coming of steroids a young arrogent doctor came into my room and talked to me like I was a child and had no education and was down right rude. I burst into tears, set off my monitor and I explained to my nurse why I was crying. She yelled at the doctor and then surprised with a stuffed lab, balloons, and a card signed by the entire cardiac unit! I still have all of it, the dog frequent the hospitals and card is on my door the balloons are on my duckie pin board. Later on Beth decided to surprise me with cupcakes! lol She is the one that is taking the trip with me, she has been thru a lot with me but anyways before I get caught rambling.
I am getting ready for vacation which is no easy task for someone like me. Not only do I have POTS, but I have asthma with lung disease. If you do not know POTS highly affects the heart, especially mine. My heart has done some crazy things and when there is stress on the lung the heart has a tendency to freak out. My Cardiologist has expressed how bad he feels for me if that tells you how my health goes. So the trip takes a lot of thought, is the place I will be staying safe? What about the trip down? Where do we eat? (food allergies) Control IVs must stay call. What about medical supplies? This is just the begin.
I have to pack everything. Extra dressing kits, extra bags, extra supplies for my IV itself, batteries, plugs, emergency bags and tubing, nebulizers, control med's and anything medical wise I could possibly need. I am to the point of carrying extra epi! I have an expired one. Yes I do know expired do not always work as well, but I'd rather have an extra set laying about then worried about running out finding a local pharmacy that I use. Oh and hotels? Do they allow smoking? Do they have fridges for IVs? The one's I am staying at do not allowing smoke and have a fridge but I had to call and make sure of this. Then food? I must make sure I travel with adequate food. Oh and to make things even MORE interesting. I am heat sensitive going to Texas (why i am being followed by a doctor) I slightly feel bad for my friend. Though she knows "act and not react." This is the statement I tell people of what to do in an emergency situation. Nothing crazier then going into anaphylaxis and calming down someone when you need help yourself. "Act" get me benadryl, prednisone, and then epi. Call Wonder Woman as your getting me to the hospital or calling 911. Then you can react to the situation.
Im also going to be gone for a bit so I must remember to take absolutely everything! I can't forget a THING. I will be about a 3 day trip from home! And anything can go wrong, I am sure Wonder Woman is going to lose her mind! lol On the bright side of things she is meeting me there and we are vacationing the way home and stopping by the KISS cafe! I am every excited!
I am praying for a wonderful and safe vacation. And that God does protect us through out the trip and keeps us all safe.
I will be up dating this thru out my trip!
Until then
Love Yall
Poppet~
I am currently getting ready to take my vacation! Less then a week and I will have my birthday with my best friend!!! Like I did last year except this year I will not be in the hospital, in tears, with nursing sticking up for me. True story lol. Last year for my birthday before 7am and just coming of steroids a young arrogent doctor came into my room and talked to me like I was a child and had no education and was down right rude. I burst into tears, set off my monitor and I explained to my nurse why I was crying. She yelled at the doctor and then surprised with a stuffed lab, balloons, and a card signed by the entire cardiac unit! I still have all of it, the dog frequent the hospitals and card is on my door the balloons are on my duckie pin board. Later on Beth decided to surprise me with cupcakes! lol She is the one that is taking the trip with me, she has been thru a lot with me but anyways before I get caught rambling.
I am getting ready for vacation which is no easy task for someone like me. Not only do I have POTS, but I have asthma with lung disease. If you do not know POTS highly affects the heart, especially mine. My heart has done some crazy things and when there is stress on the lung the heart has a tendency to freak out. My Cardiologist has expressed how bad he feels for me if that tells you how my health goes. So the trip takes a lot of thought, is the place I will be staying safe? What about the trip down? Where do we eat? (food allergies) Control IVs must stay call. What about medical supplies? This is just the begin.
I have to pack everything. Extra dressing kits, extra bags, extra supplies for my IV itself, batteries, plugs, emergency bags and tubing, nebulizers, control med's and anything medical wise I could possibly need. I am to the point of carrying extra epi! I have an expired one. Yes I do know expired do not always work as well, but I'd rather have an extra set laying about then worried about running out finding a local pharmacy that I use. Oh and hotels? Do they allow smoking? Do they have fridges for IVs? The one's I am staying at do not allowing smoke and have a fridge but I had to call and make sure of this. Then food? I must make sure I travel with adequate food. Oh and to make things even MORE interesting. I am heat sensitive going to Texas (why i am being followed by a doctor) I slightly feel bad for my friend. Though she knows "act and not react." This is the statement I tell people of what to do in an emergency situation. Nothing crazier then going into anaphylaxis and calming down someone when you need help yourself. "Act" get me benadryl, prednisone, and then epi. Call Wonder Woman as your getting me to the hospital or calling 911. Then you can react to the situation.
Im also going to be gone for a bit so I must remember to take absolutely everything! I can't forget a THING. I will be about a 3 day trip from home! And anything can go wrong, I am sure Wonder Woman is going to lose her mind! lol On the bright side of things she is meeting me there and we are vacationing the way home and stopping by the KISS cafe! I am every excited!
I am praying for a wonderful and safe vacation. And that God does protect us through out the trip and keeps us all safe.
I will be up dating this thru out my trip!
Until then
Love Yall
Poppet~
Subscribe to:
Posts (Atom)