Well I figured since Tater Tot started and fundraiser for medical bills I'd give a bit of a health update because I offered to put my blog out there so people can see what it really is like to be me. Not that I always give much details I do put it out there that my life is not sunshine and roses the way people think it is because I choose to smile and make the best of it. Because I refuse to let this disease destroy my spirit.
Well it goes like this. These past few weeks have been not so great and has been getting to me. I have been stuck on oxygen even at home doing nothing, and Wonder Woman has been helping me do things. She's helped make coffee when I assure it is to much effort, to stand there and push a button. I think that happened the day I went to the movies. Which I was short of breath on my oxygen, which was very noticeable, and that night I was struggling to breath and ended up on a couple of days of doxi... I am still on it, and I think I'll be on it thru Sunday. She has helped me dye my hair, and helped rinse it out. It's a lot of effort to do all this. I usually do not put all this out there because I don't want people to feel bad for me. I haven't been able to get back to where I was a few months ago, and I am always struggling to do things with out my oxygen. And its usually easier to do things with out but I am starting to not have that option there. I know my life is going to come to transplant one day because of the noticeable difference in how I function. Maybe they can try to fix the whole in my heart first?? I have literal whole in my heart (a PFO) not a figurative one. lol Which means I am not always circulating oxygenated blood, and I also have MRI proof I have right sided heart damage. Because of all the pressure that is put on my heart daily, and all the stress. I am at the end of my rope for medications and now I just wait it out. There are 3 locations for transplant but my lung function has to decrease a bit more, though we haven't checked it since last summer. 2 in state 1 out of state but I really am not trying to think to much about it since I am trying to focus on being in my friends wedding, it is my first priority, transplants are never guaranteed so it's always my goal to do things and worry about that later. Which is why my sweet friend is worrying about it for me, while I worry about her wedding. Its really how things go haha. I also have other things I want to do, and people I want to see.
My FB is also blowing up about me have a quality of life or it was, I really have not been on there at all. I can't handle it anymore. The facts are I really don't. People work very hard to help me with that. Which I am so greatful for. Which means I can focus on Taters wedding and really getting healthy. Or my healthy to stay stable. Which has been a fight. I get so frustrated because I am always connected to something or always short of breath and it gets really frustrating and really over whelming. I will fight to do things I want to do. Even I if/when I do end on transplant list I will do everything in my power to have the life I want. It does get over whelming and a lot of time its all about coping. Putting a tough girl face on, and unwillingly letting people help me when I need it to help preserve my lungs. Which is a huge defeat for me but I am so blessed that people are around here willing to help me.
I am not where I want to be at all, but I am where I belong which I will accept. I also will not let it stop me, I will be out there doing what I love with my oxygen and my meds. I refuse to be stopped, I refuse to let this disease get the best of me. I will do my makeup, my hair, look healthy, and let people help give me a quality of life. Ima tough girl, I can handle this.
Love Yall
~Poppet
Thursday, July 16, 2015
Monday, July 13, 2015
Misunderstood??
Not much has been going on lately, or well it seems like nothing has been going on but I feel like I am always doing something. I haven't been feeling so well lately, I have been short of breath a lot and on my oxygen but I mean it only stops me so much. I have gotten out a few times here and there and we moved the Wii into the sunroom so I can control the air/heat and keep my body controlled and not going into some POTS flare do to heat. Not everyone around here completely understand POTS and that I need cool temperature controlled areas. I also recently found out how different Lego Pirates of the Caribbean is then the DS one!! So I am sure hours will be invested into this game. Probably weeks.
But moving on haha. So back to trying to stay as normal as possible I do get out some. And recently Wonder Woman has to get her eyes checked out and after my B12 we went to get her eyes checked for new contacts and I didn't think we'd be gone long (and neither did she) so I didn't bring any snacks like I normally do and I was already visibly short of breath and took some salt pills to keep me stable so she didn't anything that would take a long time so she could get me food. When we got home we tried to explain to someone that "just 20 minutes" can make or break me. In this case it would break me. With POTS I need a LOT of salt. I control my POTS with salt, potassium and saline. Which I had only one of these and 2 grams really isn't enough. And pushing me can really cause a lot of damage. "She'd be fine, it doesn't take that long." Some days I really do NOT know how to make people understand that POTS is not a disease you mess with just like CF. Pushing my body that way could mean my heart STOPS so I do everything I can to uh not do that. I try to not let what she says get to me but there are days it does. Some people will just never get it. Yes I do have a habit of pushing my body because thats the only way I can see how far I can go. Yes Wonder Woman is usually 5 steps behind me telling me to rethink my actions.
I also had to explain to Sif today that I really haven't been getting on FB because people really just do not get what I go thru and tend to be not so nice, or they misunderstand whats going on and tag me in things that are just false which makes people text me and ask if I am ok. I actually deleted my FB apps and just got on my messenger. I get on FB to farm only. There is no need for added stress in my life alls it does is make me sick. I also figure if people are that interested in finding out what going on they'd text or message me. But so often people use social media to assume what goes on in my life and I had spent way to much time clearing things up I just decided to walk away for now.
This blog turned into a vent session of people that do not understand or "get it." How do I deal?? I talk to people who understand me, or know how to deal with me. Not every one will get it or understand sometimes people just want to be nosey and we have to decide who to trust with the craziness and emotions of all we go thru.
But I must get off here and get heat on my lungs its been a rough day. But I got gold eye shadow!!
Love Yall
~Poppet
But moving on haha. So back to trying to stay as normal as possible I do get out some. And recently Wonder Woman has to get her eyes checked out and after my B12 we went to get her eyes checked for new contacts and I didn't think we'd be gone long (and neither did she) so I didn't bring any snacks like I normally do and I was already visibly short of breath and took some salt pills to keep me stable so she didn't anything that would take a long time so she could get me food. When we got home we tried to explain to someone that "just 20 minutes" can make or break me. In this case it would break me. With POTS I need a LOT of salt. I control my POTS with salt, potassium and saline. Which I had only one of these and 2 grams really isn't enough. And pushing me can really cause a lot of damage. "She'd be fine, it doesn't take that long." Some days I really do NOT know how to make people understand that POTS is not a disease you mess with just like CF. Pushing my body that way could mean my heart STOPS so I do everything I can to uh not do that. I try to not let what she says get to me but there are days it does. Some people will just never get it. Yes I do have a habit of pushing my body because thats the only way I can see how far I can go. Yes Wonder Woman is usually 5 steps behind me telling me to rethink my actions.
I also had to explain to Sif today that I really haven't been getting on FB because people really just do not get what I go thru and tend to be not so nice, or they misunderstand whats going on and tag me in things that are just false which makes people text me and ask if I am ok. I actually deleted my FB apps and just got on my messenger. I get on FB to farm only. There is no need for added stress in my life alls it does is make me sick. I also figure if people are that interested in finding out what going on they'd text or message me. But so often people use social media to assume what goes on in my life and I had spent way to much time clearing things up I just decided to walk away for now.
This blog turned into a vent session of people that do not understand or "get it." How do I deal?? I talk to people who understand me, or know how to deal with me. Not every one will get it or understand sometimes people just want to be nosey and we have to decide who to trust with the craziness and emotions of all we go thru.
But I must get off here and get heat on my lungs its been a rough day. But I got gold eye shadow!!
Love Yall
~Poppet
Monday, July 6, 2015
POTS update
I haven't talked much about my POTS lately. My CF consumes my life at this point. I am always finding new ways it has taking a toll. A huge toll but we will get back to that another day.
This is a POTS awareness blog but I haven't really mentioned in depth lately just in passing because its pretty much under control. I am not saying that its not still debiltating or not there daily because it very much so is. My heart goes in and out of raining. Ive come close to fainting a few times. One was my fault forgot to take my salt. Also this summer has been very hot so far, and I go out and think I dress cool enough come home to be dizzy and have a very high heart rate because my body simply can not cool down on its own. This is WITH Wonder Woman blasting the AC some days it just doesn't cool down quick enough for us to get where we are going. So I have upped my saline for the summer. I am doing an average of 3 liters a day.
Which I controlmy POTS with saline, salt (and LOTS of it), diet and potassium. I also get b12 shots but its for my rediciously low levels. And not because I am vegan it was low long before I was vegan. Though the Vegan diet, as well as being gluten free, has greatly helped my symptoms of POTS. I eat small meals thru out the day, and I eat a LOT. Salt everything I eat and no gluten. I found that more your body has to digest certain foods, the more the blood in your body is going to your intstines. When you have low circulating blood volume this gets problematic very quickly. I also spoke with my doctor about this and he said if it woks for me then keep up with it. POTS isa very underresearched disease, so it takes us as patients to learn how to cope and control our symptoms. Exercise is suppose to help as well but it has been increasinly hard for me to ezercise but not because of my POTS.
I usually only struggle with my POTS in the summer and ONLY when I go out. I can not control the heat or how little my body sweats, i drink LOTS of water, i drink iced coffee (unless i go see my friend and I go strait home) and I eat cold fruit. It is vert very important to stay hydrated. Compression stockings did not make much of a difference for me, like they should have though I do wear them on long days but I found they are way to hot. And for me I also can not take cardiac medications or the "serotonin" drugs not sure it they are reuptake or inhibitors but they made me 100 times worse it was terrible.
POTS like CF is a very patient based treatment. This is what works for me, this is what i fought very hard to get to help me get my life back to the extent I could. Each patient is different. So your treatment may be drasticalyl different then mine. Or this could help you as well. :-)
But I must get off here for now I need to get this lungs taking care of
Love Yall
~Poppet
Wednesday, July 1, 2015
Frusterated
I had planned on writing an update on my POTS and how I have learned to control it, thru meds and diet then I walked out of the store today and right into someone who was smoking. I had NO idea that person was even there let alone smoking, so there was no covering my face. I immediately started to choke, cough and wheeze, I called the person a bitch while Wonder Woman went into nurse mode. I took a cocktail of meds, came home and did more. So all in all, I had to puffs of combivent (albutaral/atrovent combo) prednisone, benadryl, and came home and 2 a double dose of albutral neb). Then my heart started to go out of rhythm, so I have been sitting here trying to get everything under control. All because someone was smoking by a door.
Before I start my rant, if you smoke, that is your choice but be considerate of other people!!
When people smoke outside doors or in public areas where they KNOW a lot of people will be gathered it is inconsiderate to others. It does not just affect me but other people who also have lung and heart disease. It affects children and infants who lungs are still developing. And here is the thing, you normally can't tell me from any other person except when I am on oxygen. Not everyone with a disease that is affected by smoking can be noticed. And we deserve the same rights as any other person. We also deserve the respect. And not only does this affect the person whatever that has the disease but there close friends and family. Now they have the burden (to my family and friends i know you do not see me as a burden) of taking care of me. Did she get meds in time?? Do I need to take her in?? Does she need further medical help?? Does she have enough oxygen to get her to treatment?? Can we make it in time?? I also can see they pain in their face of complete helplessness and anger when this happens to me.
Then being a normal young adult I posted on FB what happened and how frustrated I was, since I had just texted my BFF Tater Tot I was doing ok. The only thing I had asked was NOT TO SMOKE OUTSIDE DOORS. I didn't ask for a push of making smoking illegal, I didn't ask for it to be banned in public, I simply asked not to do in doorways where you people going and out of stores. To which I was informed well maybe I should find a new place to shop. In a very polite (stop being shocked) way I said, I am not asking for anti-smoking, I am asking for it around doorways to be stopped, and if I just stopped going to places where people smoked outside doors, I would never leave the house again. Which is not an option. That means no grocery stores, no farmers markets, no going out to get meds, and I already do a lot of shopping on line. I didn't tell her that, but I did tell her I almost never go out by myself anymore because of people who smoke. I did text a few friends, and others sorta seen the post pop up on there feeds and came to my defense.
It makes me feel that people who have lung and heart disease do not have the same basic rights as other people. God FORBID I ask you not to smoke in front of a door. I want and deserve to be able to leave my house with out wondering if I am going to die today because somehow has to smoke. And no that is not over reacting. Lung disease can KILL people. Asthma alone can KILL people. Now add on to that MCAD, CF, or any other form of life altering lung disease and it is a deadly combination. I have mucus in my lungs, plus MCAD, so theres not much room for my lungs to swell to cause my airways to be completely BLOCKED and with MCAD it can trigger an "attack" (for lack of better words) and cause my to go into a life threaten reaction. Not to mention my POTS which all those meds put me into a dysrhymia.
I am not asking for you to stop smoking, I am asking for common courtesy you would give any other person.
But I am gonna hop off here and convince Wonder Woman to help make me a smoothie of sorts.
Love Yall
~Poppet
Before I start my rant, if you smoke, that is your choice but be considerate of other people!!
When people smoke outside doors or in public areas where they KNOW a lot of people will be gathered it is inconsiderate to others. It does not just affect me but other people who also have lung and heart disease. It affects children and infants who lungs are still developing. And here is the thing, you normally can't tell me from any other person except when I am on oxygen. Not everyone with a disease that is affected by smoking can be noticed. And we deserve the same rights as any other person. We also deserve the respect. And not only does this affect the person whatever that has the disease but there close friends and family. Now they have the burden (to my family and friends i know you do not see me as a burden) of taking care of me. Did she get meds in time?? Do I need to take her in?? Does she need further medical help?? Does she have enough oxygen to get her to treatment?? Can we make it in time?? I also can see they pain in their face of complete helplessness and anger when this happens to me.
Then being a normal young adult I posted on FB what happened and how frustrated I was, since I had just texted my BFF Tater Tot I was doing ok. The only thing I had asked was NOT TO SMOKE OUTSIDE DOORS. I didn't ask for a push of making smoking illegal, I didn't ask for it to be banned in public, I simply asked not to do in doorways where you people going and out of stores. To which I was informed well maybe I should find a new place to shop. In a very polite (stop being shocked) way I said, I am not asking for anti-smoking, I am asking for it around doorways to be stopped, and if I just stopped going to places where people smoked outside doors, I would never leave the house again. Which is not an option. That means no grocery stores, no farmers markets, no going out to get meds, and I already do a lot of shopping on line. I didn't tell her that, but I did tell her I almost never go out by myself anymore because of people who smoke. I did text a few friends, and others sorta seen the post pop up on there feeds and came to my defense.
It makes me feel that people who have lung and heart disease do not have the same basic rights as other people. God FORBID I ask you not to smoke in front of a door. I want and deserve to be able to leave my house with out wondering if I am going to die today because somehow has to smoke. And no that is not over reacting. Lung disease can KILL people. Asthma alone can KILL people. Now add on to that MCAD, CF, or any other form of life altering lung disease and it is a deadly combination. I have mucus in my lungs, plus MCAD, so theres not much room for my lungs to swell to cause my airways to be completely BLOCKED and with MCAD it can trigger an "attack" (for lack of better words) and cause my to go into a life threaten reaction. Not to mention my POTS which all those meds put me into a dysrhymia.
I am not asking for you to stop smoking, I am asking for common courtesy you would give any other person.
But I am gonna hop off here and convince Wonder Woman to help make me a smoothie of sorts.
Love Yall
~Poppet
Monday, June 29, 2015
Thoughts
Being raised by a nurse, we always focused on quality not quantity of life. Though it was never spoken out right, growing up I never heard much about living a long happy life, but doing what you love no matter what. She even moved me 12 hours away from her to let me do what I love. She always shared experiences with me, we went to concerts, amusement parks, museums, the beach, and she still makes a point to do things with me and help me do things I love. The hardest one at the moment is traveling but she still tries.
More so then ever she has been helping me have a quality of life I do not really have, while still being the brain of things. I have always had this "lets do it not think it thru" way of living. Do I want to do it?? Yes?? Well I will find away!! So she's always going "its hot" lets wait till fall. "That's water you have a pic line." "That has a heart warning." And the best one that has lasted 28 years "what were you thinking?!?!?!" Yeah, she has had her hands full for a long time now. But off to the point.
The point is, so many people think they have this long time to live. They have years to get things done. There is always tomorrow. There is no guarantee of a tomorrow, thru God's grace we wake up every day. Life is a truly wonderful thing when you have wonderful people around to help you lead the life you want to have. So often I here "I want to do this but its not feasible" and I always always always ask "why isn't it??" and if they don't give me a good explanation, I remind them laying on the couch gets you no where. If you have the ability to experience life and love life. Do it!!
I remember last year I went to the beach and I was so happy to be there I just sucked it all in. I took picture of the waves, and the seagulls, and i just stood there breathing in the salty air, listen to the waves crash on the beach. I took almost 100 pictures. My friend didn't quite "get it" or see how amazing it truly was. To him it was just a beach. To me?? It was where my heart belonged. It was feeling the sand on my feet, my hair whipped around, cool water between my toes, seagulls singing in the sky.
I drag Wonder Woman to all these museums and she makes sure I get to see every part of it. Still as an adult because I love animals, I love science, and she sits and lets me take pictures, she lets me drag her to 3 different areas, she lets me smile at the oddest things. I am so the girl that stops by the bushes at stores to watch dragon flies because they are my favorite creature. I don't just pass it by.
So what I mean, experience life, enjoy life, get out and do things, find what you truly love, what your heart desires and DO IT. Don't let harsh words stop you. Get out there and love your life!!
Love yall
~Poppet
More so then ever she has been helping me have a quality of life I do not really have, while still being the brain of things. I have always had this "lets do it not think it thru" way of living. Do I want to do it?? Yes?? Well I will find away!! So she's always going "its hot" lets wait till fall. "That's water you have a pic line." "That has a heart warning." And the best one that has lasted 28 years "what were you thinking?!?!?!" Yeah, she has had her hands full for a long time now. But off to the point.
The point is, so many people think they have this long time to live. They have years to get things done. There is always tomorrow. There is no guarantee of a tomorrow, thru God's grace we wake up every day. Life is a truly wonderful thing when you have wonderful people around to help you lead the life you want to have. So often I here "I want to do this but its not feasible" and I always always always ask "why isn't it??" and if they don't give me a good explanation, I remind them laying on the couch gets you no where. If you have the ability to experience life and love life. Do it!!
I remember last year I went to the beach and I was so happy to be there I just sucked it all in. I took picture of the waves, and the seagulls, and i just stood there breathing in the salty air, listen to the waves crash on the beach. I took almost 100 pictures. My friend didn't quite "get it" or see how amazing it truly was. To him it was just a beach. To me?? It was where my heart belonged. It was feeling the sand on my feet, my hair whipped around, cool water between my toes, seagulls singing in the sky.
I drag Wonder Woman to all these museums and she makes sure I get to see every part of it. Still as an adult because I love animals, I love science, and she sits and lets me take pictures, she lets me drag her to 3 different areas, she lets me smile at the oddest things. I am so the girl that stops by the bushes at stores to watch dragon flies because they are my favorite creature. I don't just pass it by.
So what I mean, experience life, enjoy life, get out and do things, find what you truly love, what your heart desires and DO IT. Don't let harsh words stop you. Get out there and love your life!!
Love yall
~Poppet
Saturday, June 27, 2015
Update: Longish
This past week has been really rough on me health wise. I am starting to realize how week my lungs have become. Wonder Woman has faith I can strengthen them but I am not so sure. It's been this way for almost 2 months and I normally don't have issues like this for months at a time. I have to have strong lungs by next June to.
But this week in general. Well I went to "work" with Wonder Woman and I could feel it but I didn't use my oxygen because I was in a cold office playing on my iPad and I wasn't visibly struggling and as I have been dependent on it in the day at times to I just wanted it off for my poor nose. Not sure if I put on here on but one day it was so bad, I had to have her help me make dinner. Yeah I am NOT the easiest person to deal with in a kitchen. I am a Chef with food allergies (thank MCAD) so I am pretty controlling which is crap when I really do need the help, she yelled at me only once though. We also had a terrible storm come thru one night to and I was so symptomatic that it woke me up and I was dizzy laying flat (terrible on my lungs I know but my heart wasn't tolerating this weather either) if I had so much as moved I would have passed out laying down. POTS for you. A sudden drop in barametric pressor will make my instantly symptomatic. Storms in general do, but when its a sudden hit I am done for.
Which brings me to today. Well, I had plans for lunch today, and since Wonder Woman promised me mall trip we went there to. Which is never good I am addicted to Michael Kors!! And she bought me "Alice in Wonderland" today with all of his other work!! OMG heaven!! BUT lets back track a little.
Well as I said this week has been rough, between POTS and my CF, well I am surpirsed I got out today. My mucus in my lungs was solid so I decided to order jalepenos on my bagel sandwhich to sorta break it up a bit. It works wonders on me for some reason. So then I was sitting in a full restaruant not able to cough and clear my lungs. I looked at Wonder Woman was like uh problem?? Which is the WORSE thing to say when you have food allergies and thought I did tell them it still can be and issue. She goes what?? Im like the jalepenos worked and I cant cough. The nurse comes out in her big time cause of me lol and she gets concerned. I do realize that not everyone is use to CF or is a nurse and gets grossed out so of course she starts laughing!! As soon as I left I had a horrid coughing fit but it helped. So we went to the mall and parked where we ALWAYS park.
So we go upstairs, and stop at MKs and I see a shirt i LOVE but didn't buy I had to drop way to much money on meds so I had to pass and I need to get dry shampoo because I can't always lean over the tub to wash my hair and can't stand in the shower cause I can't get my PICC wet thought I do use a shower covers. Anyways, Wonder Woman needed to go to Barnes and Nobles so we walked the length of the mall which is never usually a problem. I was feeling it a bit but nothing concerning and she always lets me sit and rest if I need to. And of course the section she was looking for was on the upper level. I assured her I could walk up a flight of stairs. I use to do it all the time. She gave me the option of leaving the store hitting the escalator and going in to that entrance. I said no I'd be OK and walk up stairs the way i normally do. BAD IDEA. Even slow even breaths with each step didn't work. I was so short of breath by the time I was up there I felt like I would collapse but I gained my composer in the music section. I somehow surprised and got a Wonderland book lol. Which I needed a new book anyways I am running out of Robin Cook books and finished the Hunger Games series (phenomenal series the 1st book starts a bit slow though) and the Divergent series (hated it).
I did get home in one piece tho!!
Since this is a bit long I am going to hop off here haha
Love Yall
~Poppet
But this week in general. Well I went to "work" with Wonder Woman and I could feel it but I didn't use my oxygen because I was in a cold office playing on my iPad and I wasn't visibly struggling and as I have been dependent on it in the day at times to I just wanted it off for my poor nose. Not sure if I put on here on but one day it was so bad, I had to have her help me make dinner. Yeah I am NOT the easiest person to deal with in a kitchen. I am a Chef with food allergies (thank MCAD) so I am pretty controlling which is crap when I really do need the help, she yelled at me only once though. We also had a terrible storm come thru one night to and I was so symptomatic that it woke me up and I was dizzy laying flat (terrible on my lungs I know but my heart wasn't tolerating this weather either) if I had so much as moved I would have passed out laying down. POTS for you. A sudden drop in barametric pressor will make my instantly symptomatic. Storms in general do, but when its a sudden hit I am done for.
Which brings me to today. Well, I had plans for lunch today, and since Wonder Woman promised me mall trip we went there to. Which is never good I am addicted to Michael Kors!! And she bought me "Alice in Wonderland" today with all of his other work!! OMG heaven!! BUT lets back track a little.
Well as I said this week has been rough, between POTS and my CF, well I am surpirsed I got out today. My mucus in my lungs was solid so I decided to order jalepenos on my bagel sandwhich to sorta break it up a bit. It works wonders on me for some reason. So then I was sitting in a full restaruant not able to cough and clear my lungs. I looked at Wonder Woman was like uh problem?? Which is the WORSE thing to say when you have food allergies and thought I did tell them it still can be and issue. She goes what?? Im like the jalepenos worked and I cant cough. The nurse comes out in her big time cause of me lol and she gets concerned. I do realize that not everyone is use to CF or is a nurse and gets grossed out so of course she starts laughing!! As soon as I left I had a horrid coughing fit but it helped. So we went to the mall and parked where we ALWAYS park.
So we go upstairs, and stop at MKs and I see a shirt i LOVE but didn't buy I had to drop way to much money on meds so I had to pass and I need to get dry shampoo because I can't always lean over the tub to wash my hair and can't stand in the shower cause I can't get my PICC wet thought I do use a shower covers. Anyways, Wonder Woman needed to go to Barnes and Nobles so we walked the length of the mall which is never usually a problem. I was feeling it a bit but nothing concerning and she always lets me sit and rest if I need to. And of course the section she was looking for was on the upper level. I assured her I could walk up a flight of stairs. I use to do it all the time. She gave me the option of leaving the store hitting the escalator and going in to that entrance. I said no I'd be OK and walk up stairs the way i normally do. BAD IDEA. Even slow even breaths with each step didn't work. I was so short of breath by the time I was up there I felt like I would collapse but I gained my composer in the music section. I somehow surprised and got a Wonderland book lol. Which I needed a new book anyways I am running out of Robin Cook books and finished the Hunger Games series (phenomenal series the 1st book starts a bit slow though) and the Divergent series (hated it).
I did get home in one piece tho!!
Since this is a bit long I am going to hop off here haha
Love Yall
~Poppet
Monday, June 22, 2015
Today
Today was just awful. Plain awful. I actually slept last night after a week of a compition in a game I play. I came in second and got first prize (top 5 won).
Actually sleeping means I wasn't up and down all night, and Rubes the cat got in bed with me and I felt her press against me and I remember waking up enough to roll over and curl up around her. Well I was so tired from being up all hours of the night with the game and lots of benadryl I slept that way until almost 5 am or a bit later. This is unheard of for me to actully sleep that long and/or lay flat to sleep that long, usually wake up because I can't breathe.
So this morning I felt it. It took me over an hour to get out of bed. When I got up I finally I couldm't catch my breath. I thought nothing of it, warm days tend to get this way with me, dehyrate at night because I run out of water and won't go by the glass door at night because I watched a few horror movies lol and after a liter of fluid for my POTs whivh also helps loosen up or rehydrate my secretion to make them movable I am ok. So I just took my oxygen off went about my day as normal. Well nothing worked I wsa couighing and wheezing went and got Wonder Woman to beat my back for PT and just went to shower. Grabbed my oxygen and lost my breath. So we figured well its HOT so well just go get food and come home not stop by the mall. I havne;t got much better,
Wonder Woman offered me the recliner I call my chair and sleep in her room to tongiht. In her room since we hang out in there and watch TV or play video game I have a chair. And she offered to let me sleep in it tongiht I am so bad. AND I asked her to help cook me dinner tonight. Which I think she deserves a saint award for. I was sitting in the chair in the kitchen and I would try and scoot it around and not get caught because I get let go of control in the kitchen. Its my natural habitat. It was easy mashed taters. But uh "until its done" or "splash" is a changing varianle per person lol but she handles it well lol tell me to shut up and stop moving lol
My lungs do worry me. Oh gosh days like today remind me of how serious and how bad my lungs really are and are going to get. Which can get very scary and very over whelming. We are at the max of what we can do at this point and I am on all my meds. So we just pray for a better tomorrow. And we take time to realized how blessed we are to have a nurse that sacrafices everything to give me a quality of life I would other wise not have. Why we call her Wonder Woman. Truly amazing and selfless person.
But I guess I need to get comfy
Love Yall
~Poppet
Actually sleeping means I wasn't up and down all night, and Rubes the cat got in bed with me and I felt her press against me and I remember waking up enough to roll over and curl up around her. Well I was so tired from being up all hours of the night with the game and lots of benadryl I slept that way until almost 5 am or a bit later. This is unheard of for me to actully sleep that long and/or lay flat to sleep that long, usually wake up because I can't breathe.
So this morning I felt it. It took me over an hour to get out of bed. When I got up I finally I couldm't catch my breath. I thought nothing of it, warm days tend to get this way with me, dehyrate at night because I run out of water and won't go by the glass door at night because I watched a few horror movies lol and after a liter of fluid for my POTs whivh also helps loosen up or rehydrate my secretion to make them movable I am ok. So I just took my oxygen off went about my day as normal. Well nothing worked I wsa couighing and wheezing went and got Wonder Woman to beat my back for PT and just went to shower. Grabbed my oxygen and lost my breath. So we figured well its HOT so well just go get food and come home not stop by the mall. I havne;t got much better,
Wonder Woman offered me the recliner I call my chair and sleep in her room to tongiht. In her room since we hang out in there and watch TV or play video game I have a chair. And she offered to let me sleep in it tongiht I am so bad. AND I asked her to help cook me dinner tonight. Which I think she deserves a saint award for. I was sitting in the chair in the kitchen and I would try and scoot it around and not get caught because I get let go of control in the kitchen. Its my natural habitat. It was easy mashed taters. But uh "until its done" or "splash" is a changing varianle per person lol but she handles it well lol tell me to shut up and stop moving lol
My lungs do worry me. Oh gosh days like today remind me of how serious and how bad my lungs really are and are going to get. Which can get very scary and very over whelming. We are at the max of what we can do at this point and I am on all my meds. So we just pray for a better tomorrow. And we take time to realized how blessed we are to have a nurse that sacrafices everything to give me a quality of life I would other wise not have. Why we call her Wonder Woman. Truly amazing and selfless person.
But I guess I need to get comfy
Love Yall
~Poppet
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