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 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

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

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~

A lot has happened this past week, or over really.

I was getting a test set up, with a doctor that really is not familiar with POTS. I found my IV is the rest of my life. So you know what this means? I need to get a back pack other then just black to rock! I also found out my lung disease is pretty crappy. Which I never talk about on her but will sorta fill ya in though. I guess I was suppose to be informed of this already but I wasn't, thankfully PICCs aren't that hard to live with, though I want my tunneled back. Fashion was a bit easier with that Abeslom. Yep he's named! Though I did make some fabulous PICC covers which I will soon be selling.

PICCs are very hard but easy to travel with. As for flying, with a doctors note most air lines are required to let you travel with your IVs. Considering it is medically necessary. Honestly I'd rather just drive. I feel its less to worry about. Which I did get permission to travel this summer. VERY strict guidelines, but after my journey! This is very deserving. Guidelines you ask?? Can't leave the house during the day. I am going to be in the desert. YES the desert with POTS. I have to contact Superman daily, and I also have to travel with ect saline. Which was a pain in the butt to get, but its well worth it. I am excited! I am trying to talk Wonder Woman into driving out to "pick me up" and stop at a beach on the way back. Yes a beach with a PICC, with proper precautions I am sure it will be OK. I will tape everything I can. I do not go in the water so it will work out.

As for my lungs. I am sure yall are curious. My lungs like to fill with a thick sticky mucus. It causes, pain, shortness of breath, my heart to do some crazy things. I wheeze, and cough. Not to mention all the awful triggers I have. I have lung disease with asthma. But when my lungs fill with mucus my hard rate spikes, and I get a fever. So it makes my POTS trigger. This is also why I am on IV treatment and not beta blockers, calcium channel blockers, and midodrin. Cardiology says "i do what superman says" he really says this! Superman says do not let anyone give you anything for your heart. Superman is the one that had me diagnosed with POTS, and picked up on it. I adore that doctor. He works miracles. I swear he does. Though I can't say he likes home health very much. We finally got my lungs treated properly and have greatly lowered my heart rate. I had a wonderful ER staff help me!

Well I guess I must go, Cheshire just appeared in the movie and we all know how wonderful Chesh is!!

Love Yal
~Poppet

Almost a year

I can't believe its been almost a year since i have started IV treatment for POTS. Although its been a rough year. So far I have survived and have received part of my life back! I do not know where I would be with out this treatment! Admitted all the time? Frail? Bad lungs or well worse lungs? A bad heart? Not on the verge of going back to school. I'm so thankful to be blessed with treatment!

I am sure your wondering what IV treatment I get. I get normal saline in my IV at home. What saline does for certain POTS patients is help keep them hydrated. Most POTS patient wants they reach the point of dehydration they tend to become symptomatic. Which usually translates into a rapid heart rate, sometimes i go into an off heart rhythm (dysrhythmia), become short of breath, black out, pass out, and in me it triggers off my asthma. Staying hydrated is VITAL for a patients with POTS. With my saline i still drink so much water its ridiculuous. But I am not going to complain when I have most of my life back. I remember when I had Sepsis within the 5 day stay i had received almost 30 liters if not more. I had such a high fever they couldn't keep me hydrated. They also discontinued all my meds so that did not help. It also put my blood pressure in thes 70s! NOT good!! I have had it lower so i was not worried at all. The doctors were in a state or worry and I'm like um what? Its YOUR fault.

I've had a rough journey with home health. Well not them to be honest the system I am with has been great. Wonderful angels that have been brought into my life. But with my PICCs, I had a horrid reaction to one, i had sepsis in the other, and so far this one has been OK. Which I am thankful for. I am super paranoid since the sepsis has been recent, now I am at risk for sepsis again. So its been a battle. Buts its a battle worth fighting, and I know this war is not over. It will be a long road but its really is worth fighting. I couldn't imagine not having this life. A semi-active life with over protective people trying to keep me safe. All of us work together as a team to keep me out of the hospital.

I have lost many people along the way. But I have gained a few to. I have gained people who I can't imagine living with out. Near and far. I have been blessed with truly amazing people in my life. Some I met on farmville (hush), some i have met in hospitals, and some have been there all a long. Life has amazing ways of working things out but is so worth it. And through God's grace I have survived this long road.

I must get going I promised Wonder Woman dinner. I am telling you once a Chef always a Chef!

Chef Poppet signing out :-)

Love yall
~Poppet!

What i wish people understood.

Things that I wish people knew, if not understood. Chronic illnesses has taught me many things, some only people that live with a disease will know or understand. Some people understand out of love and compassion. They are 1 in a million however one would not be more blessed to have them in their life. I know I am! Before I ramble like always here are things that i wish people understood or knew.

It's not that I don't want to: Because the reality is I do want to. I really do. However, I must choose between life and death. Or living in or out of the hospital. I often to get yelled at, put down, or walked out on. I wish they would know, I am literally waying my odds. Is what I am about to do going to put me in the hospital or kill me? If the answer is yes to one of them I am not going to hang out or be apart of it. If a person truly loves you, they will support you and say I understand what are you able to do.

I never asked for this disease. I can see the looks on your faces thru the screen "you got to be kidding me." No I am really not. Many times people blame things happening on me when its out of my control. Oh you got admitted again won't you ever learn not to put your health at risk. Your sick again!? Why didn't you strengthen your immune system? In bed again? Stop being lazy! Why did you put yourself in harms way?! I have never once intentionally put myself in harms way! I don't want to lay in bed all day. My immune system was suppressed for a reason on top of what it naturally is. Yes there are ways to strengthen but we have to way the risks. I do not want this disease. I was giving this life and I am going to take advantage and change the world.

Why can't you just compromise with me? Yes I have been asked this. Refer back to part one. I want to but again. Weighing the odds. If it's not the worth the risk. Why can't you just come over and sit with me?

Can;t you just wait to take your medication until later? No. No I can't. If I am telling you I need to take it, my body is telling me I need to take it.

Why don't you gain some weight it will help stabilize you? You don't think I have tried? I eat constantly, with what is safe for me to consume. I have to disease fighting against me. I constantly struggle with this. My labs read I am OK. And when they do not they are fast to treat. I have the justice league on my side. They are also fast to admit me. What I need is water weight to keep me where I need to be. If I am able to talk to you, I am where I need to be.


I am sure most of you are in awe and can't believe people have said this to me. I hear this often if not constantly. I have almost gotten to the point where I am just want to make a recording or a quick text to send this stuff to people when they start up. However, we take it with Grace. Or, frantic calls to Wonder Woman, freaking out cause I am upset once again.

Please learn to understand people with Chronic Illnesses.

Well I'm off for now.
Love Yall
~Poppet