blah

I am beyond exhausted as I have been on steroids for a week now and I have attest 3 more days to go. I am not sleeping well because of them and before that how poor my breathing was. The only day I slept was turning my oxygen up to 3 which I think I might do again. My lungs ache because of plugs, my chest keeps aching because of how much I have been clearing my lungs because my airways are finally open enough to get some things out. The secretions are so thick that it just hurts so bad when it settles and theres not a thing i can do until Wonder Woman gets home. I woke up miserable!! I hear I have been quite bitchy to. Batman was sweet and sent me a very lovely song again which always seems to cheer me up. He also knows how to deal with my not so nice attitude at times.

I am sitting here drinking coffee trying to get enough energy to finish writing this let alone get up and cook dinner. I have eating much at all today which is not good for me at all it will effect my weight, my blood sugar, my blood pressure... So I will cook a nice lovely meal here soon, high in carbs, sugar, and protein. Thats about all I can do at this point or just eat ice cream. I have no idea about the whole ice cream though as I eat 2 spoonfuls and feel quite awful. So I have to sit there and force myself to eat. Or I eat to much fat and not get enough enzymes in me and I am in pain. It feels like this non sense is never ending. Which well its not but it's a bit worse then normal. I am just so spent!! I just want to sit in my chair and read a book about my newest second favorite ship and learn all about this amazing woman but I can't concentrate because of my steroids. Yes this sounds whiney but steroids are an awful thing and these are side effects of them. Though Gma and Auntie brought me home a sock monkey and two rubber duckies to sorta cheer me up. Which was nice of them because I yelled at my poor auntie cause she didn't remember I was allergic to pineapple. Something so simple makes me so angry on these meds. I mean I walked down the hall last night because I forgot something remembered i have to take my new meds which is just the worse and in front of poor Wonder Woman I just scrame FUCK yes thats what I do and she understands what steroids do to me and she just wrote it off as nothing.

I also a bit upset my hair isn't clean. I haven't had it in me to even ask for help and it stresses my lungs anyways and the added stress of my swelled airways I don't think I could handle it at all, or that wonder woman has been a bit busy lately and I feel guilty asking her to help before tomorrow. But I guess I need to get off here and start cooking.

Love Y'all

~Poppet

Small Update

So Poison Ivey started a Facebook page for me so I figured I'd try to do a complete update for once. Between the new med, and a tattoo that Wonder Woman was kind enough to get for me to memorialize my pup Dog Dog. Which it destroyed me when she died and there was nothing I could do to help or prevent it. But it taught me a lot about how animals are treated so much better then humans when it comes to end of life care. I have seen animals and humans go thru the same thing... OK anyways before I start to cry.

My health has been a bit poor and I have spent the last few months trying to get off this oxygen again but its always near me or on my face. I have told Wonder Woman, me and her, wii fit... She's a nurse and good at keeping me in line. It will also help my lung function and force me to sit down when working with someone else. Its hard and difficult but I can make it work. I am determined to make it work. Inspite of how terrible this new med is. I am determined to keep my lungs strong. People need me and I have so much to live for that I will never let this disease win.

Im not sure if I posted recently I had a bit of a rough weekend and early week, I mean I am not bad enough to tell people I do not feel food but bad enough to be on steroids for a couple days and laying around on oxygen. I am on my antibiotics to but when am I not on those. I was sitting here short of breath, and couldn't function so I just went and started my meds or well was told to start my meds to get me past this little hump. Its been a bit over whelming lately. I am doing all I can to stay stable, to stay functional, but I find that even cooking this week takes everything out of me. But I did get to go see Poison Ivey and clan!! Which is always such a treat to be able to hang out with them. I even got to go see them this time!! Which is even more of a treat. I always enjoy going to see them and wish I could get out and see them more. I wanted to hang out longer but I was at the expense of my oxygen. Which is another reason I have to get off this again while sitting idle. I can handle it being up and moving around but to sit idle and need it again is a bit nerve racking. My ears and nose hurt not to mention my time out is limited. Which is SO not fair. But I do know that people aren't ever able to get out so I am not going to complain at all just explain my crazy life and what I go thru.

But I am going to get off here and start getting things ready for dinner so I am not draining all of my energy cooking one meal.

Love Y'all
~Poppet

Blessed

As yall know or most of you may know, Poison Ivey designed shirts to sell. They were to help raise me for a lot of things going on health wise, I try to keep all that off of here so I will not go into detail. Well they came in today!! I rocked mine hardcore today!! Fresh teal hair and all wore some hot pink shirts to match!! Pink lipgloss!1 OK not the point though i even curled my hair!! No braid today!1 lol OK so anyways, first pic came from Batman!! It was so sweet to see him wearing the shirt!! BTW its black with pink writing and skull/hearts/lungs/rose on it. I went over to see Poison Ivey today and come to a text from the All Father rocking the shirt!! You could see his proud face!! So sweet!! Then I got messages from one of my long time friends and her family supporting me!! I felt so blessed today. So much love and support coming in from all angles. I got to see my other family today, got a bunch of lovely text showing support. And to think my morning was bit rough!!

To explain this morning I guess I should start with yesterday. I touched up my Teal hair, dyed the roots and such with the help of Wonder Woman. When I was dyeing the front I took off my oxygen cause I was dying my tubing so was off my oxygen for about 20 minutes, which normally wouldn't bother me but my lungs got messed up a bit a few months ago. So I let it sit for a couple hours as its JUST vegan dye and i mix it with a white Wen conditioner shampoo so it doesn't damage my hair. So rinse I had to wash it over the side of the tub which is a no no but I had turned up my oxygen and was like oh whatever i'll be fine. Classic Poppet thinking that gets me in trouble. So I spent the rest of the day in my chair on my oxygen turned up a bit, and decided to go to sleep with my oxygen on 3 to get me OK for the next morning or well today. It did!! With a catch, I couldn't wake up this morning. I remember waking up to turn off my alarm and go right back to sleep and it took me abit to get up and moving. Then my smart self was gathering tubing with a cup of coffee in my hand. Spilled it EVERYWHERE, so had to fix that!! I made over to the Poison Ivey lair!! And a lovely afternoon!!

But I half to cut this short, my tattoo keeps catching!! Wonder Woman got me a sweet little tattoo on my inner rist!!

Love Yall
~Poppet

New med is awful

This new med has really been tearing me down. The side effects are awful!! All the classic signs of POTS. Drop in blood pressure, dizziness, nausea, near fainting... So needless to say its TERRIBLE. I have finally over come all this with the lovely help of Saline and diet change to be giving a med that causes it. And it says right on the package only tell your doctor if it last longer then 4 hours. So yep 4 hours of torture... I tend to take it at night now but if I have to get up the symptoms hit hard. Like POTS, as soon as you sit up you feel as though your gonna collapse!! Let alone make it to wear you need to. And by need, I mean its a necessity you get something. Lets sit up and spike my heart rate and drop my blood pressure!! Lovely right?? If you have POTS you know exactly what I am talking about. Which I went out today and didn't realize I had went so long with out eating and flared my POTS. It was salt salt salt, and saline. I laid in my chair bugging Z thru texting once I was stable enough to look at my phone with out spinning. We were almost home and I looked at Wonder Woman and was like. Dizziness, nausea, felt like I was gonna collapse sitting down. I keep salt pills on me so I took those and ate some pretzels, made it in and was like Saline Please!! She got me all connected and was good a bit after that. Clearly I am having POTS issues lately!! I almost never have issues with it because of my lovely Saline. But between new meds and being out to long... WHOOPS. The last time I was this sick with my POTS. I had gotten a tattoo and forgot to take my salt and my lungs were to strait and the combo... Was done for. I didn't go out Wonder Woman is good at getting my stable ASAP, and I am also good at knowing my body.

Then I was doing treatment for the night. Trying to put it off for a bit because my afternoon treatment was way late for my CF because my POTS was like HA! Your not moving!! So I flush you and get a fever!! Not because its late but because my MCAD wanting to rear its ugly little head. Wonder Woman says stress, I say my body just hates me. My pail white skin is blood read and puffy. Stress is a very evil thing.

In the good news area, the t-shirts we were selling came in today!! I was so excited to see them and so excited to see that everyone is loving them!! They are so well done, Poison Ivey did such a good job on them!! I am so ready to rock it!! I was so worried at first, I sorta looked at Wonder Woman and was like I do not know 20 people!! She was assured me I would be surprised at all who cares. I was!! I had so many sweet comments, and so much love from them. I also would get on and see tons of awareness in my name. Not just for CF but for POTS as well. We raised about $100!! Which is oh so wonderful. Every little bit counts, and thats the part I can not stress enough!! Every little thing counts. I am so blessed I had people care about me enough to buy a shirt!! And will rock skulls, lungs and hearts!! Or just wear my name on the shirt to help with a "cure." I truly love you guys!!

But I guess I must get off here, I hear the jingle of the kittie collar. Yes she is the all ruling.
Love Yall
~Poppet

Half an update sorry guys

I am so nautious from this new med so I am not sure how long this is going to be. I am going to try to work thru it, but I have already whined to Wonder Woman about wanting Zofran and last time I had that I was REALLY sick. I have tried a few things so its now to the point of "deal with it" sooo I am just gonna up date about my crazy day. Which started with my cat HOWLING at the top of her lungs which we found out was because she wanted her water dumped, her bowl cleaned, and refilled. To which she climbed up next to Wonder Woman and drank the fresh water... Sighs...

We had plans on going to the tattoo fest today so I got ready so we could leave, filled a tank the works. So we get there and the smoking area outside is right by the door. Which drives me mad!! Not everyone who is "weird" smokes!! I have 7 tattoos, pierced, and teal hair. I dont smoke!! I didn't even smoke before I truly knew what was wrong with me. So we went in, walked around a little bit, and we decided to leave because there was nothing fancy there, and no where to sit down, We didn't like the shirts, we didn't see anything worth the high prices, and I couldn't find the booth for a local chronically ill child I support sooo we left, and into the smoke. And of course PETA is right by the door. This Vegan does NOT support PETA. Hate me all you want, I can not stand PETA. Anyways soooo we decided to go the mall. One close to the convention center we almost never go to. Wonder Woman needed work clothes and I said well why not lets do it while we our out here. By this time I had been out about an hour or so and we walk in the mall find Michael Kors and when we walked out there was this glass display case and what was in it?? Build a Bear Star Wars!! OH MY GOSH. I maybe a Star Trek fan but I also love love love me some Star Wars!! So we gad a mission after I stopped by to say Hi to the Bare girls find Build a Bear on the other end of the mall. OK I can do this!! And we did!! I got the blueish black one that has star wars all over in Han Solo's outfit name it "Hon" and Wonder Woman got the Wookie Chewey of course lol. So original right?? Well we walked back to the center where we came in, and looked at Wonder Woman and asked her to find the disney store for me, I know they have an Alice in Wonderland make up line, so I wasted my lungs to walk there and they didn't have anything Alice!!! I was so upset!! It was only 4 stores down but when you have lungs like mine thats a long walk and after I had walked all that way and at the tattoo convention it was a bit to much and to find out there is no Alice?? And I NEED that makeup ok anyways. So we leave and I find out my entire shoulder is red from my oxygen tank!!

But I am going to hop off here I can't do this whole nausia thing anymore :-(

Love Yall
~Poppet

Sif came today!!

I haven't been feeling so great lately, and i've started a new med so it's been an interesting week. I am not able to come off my oxygen anymore but I have gotten use to that. My ears haven't but I have. I have been trying to read my lovely new book but I have to stop and keep doing things like answering my phone or this new med drains me so I haven't gotten far and it breaks my heart!! I want that ship!! and the lady the book is about is such a remarkable woman but anyways...

Lady Sif came by today!! She got me out and made such a lovely change to my week. It brightens my day when friends come around it really makes all the difference when it's been a stressful week. We got starbucks!! We also made a Target trip which is a great for my lungs to get a bit of exercise and it helps me not stay idle though I am sure that whiped me out but I am so grateful I can get out and do things still. Even just an hour out of the house is enough to change my mood. And some lovely lady let me sit down for a bit while Sif was trying on clothes. Such a nice change to meet a nice stranger. I also popped on FB for a bit which was a reminder on why I never get on there. Its just no good, there to much drama, to much negativity and its just so much more peaceful with out it. Just gonna stick to my games. Though its much easier to be off the computer I can't live with out my farm!! Well I can but I love farming and I have been playing it for so long.

I also went out yesterday so that could also be the cause for me to be so tired!! I just layed in my chair and just watched Star Wars. I asked for the Hon Solo Star Wars and Wonder Woman put it in :-D!! Even waited til after treatment so I could watch thru.

But back to the new Med?? I got this new med to help my boor bones as I take a lot of steroids, its an injection and it doesn't hurt bad at all I am just very unfamiliar with how to give myself shots the proper way and prevent it from going into my tissue instead of where its suppose to go. We think that I did that yesterday as I am so "whatever" about this stuff I just sorta stuck the needle in and injected it. Today I had a bit more help. I had Wonder Woman help me which we had a bit of a disagreement where the needle was going to go. Sounds terrible but it wasn't. So as most know I have two skulls on my thigh and it covers most of the side of it. (not known for small tatttoos) soooo I wanted to stab it in the eye. Demented I know but theres no shame here!! But as I had a welt yesterday she wanted to monitor it and a black eye was not the place though looking for red in a black and grey tattoo probably wasn't the most proper place to pic but I did none the less.

But I guess I best get off here, I am exhausted and I need to humidify my oxygen.

Love Yall
~Poppet

One of those days

Today was just all around rough. There's no way around it was just plain out rough. It wasn't a bad day but I struggled all day long with my breathing. From the moment I got up until now.

When I got up this morning as soon as I set up I knew my lungs were a bit rough, but I didn't think it would be terrible sometimes the down side of benadryl is I sleep to sound and tend to wrap around Rubes which makes me to flat and after a bit of treatment I am good. So I walked down the hall, and I was coughing pretty bad, Wonder Woman heard me and she of course wrangled me up and said PT. I told her I hadn't grabbed my inhaler yet but my right lung hurt and we needed to focus there so I went grabbed my inhaler and my phone to see such a lovely message, and listened to a very sweet song which made my morning much better. It was texted to me and it was a song from the 90s that  I grew up loving, I think I played it twice before I walked down the hall for PT and treatment. I am not even sure I replied right back I was distracted by the song. Well anyways, we tried PT which alls it did was dislodge it and make my breathing worse. So not only was Wonder Woman rushed this AM, she took time to pound on my back between treatments. I also sat on my vest with it on high. That lung still hurts to. That was just the first hour of my day!! I texted Batman going I need my coffee but getting up well yeah not happening, I got some coffee on the way to get IV supplies since I have to walk thru the kitchen but getting up to just get my coffee was to much stress. Wonder Woman usually helps me during the summer, but no one was home for the most part today. But I made it!!

I have a bad habit of taking off my oxygen during the day, which never makes Wonder Woman happy... my airways tend to get sore, and really dry, my ears get sore from the constant pressure and a few minutes of a break never hurt anyone right?? WRONG. Well today anyways and take it off put back on. Right back on.

Then Wonder Woman comes home and looks at me and tells me I look spent, its like well put up with these lungs and heart and you'd feel the same way. It's very taxing at times to breathe with all this going on. Then I also have to make my food, get my coffee, get IV supplies with out some one to help here and there its added stress. She gets it so it wasn't a terrible thing. And she helps where she can when she got home. Thought she was a bit concerned when I washed my face!! She had come to tell me about this show she was watching and she's like uhhh hurry up and wash your face please. I assured I have this to a science and got my oyxgen on pretty fast and then was like uhhh I forgot my phone so I can sit here and catch my breath!! But over all it wasn't a terrible day just struggled a bit with these lungs. Some days is harder then others but what matters is you still fight like you do on your good days. It also makes me thankful for days I can get out even when i have to stop and catch my breath.

But I guess I need to get off of here before the Rubes finds I am on my lap top and not making time for her!!

Love Yall
~Poppet

rammmbbllleee

You know, it never gets easier to tell people how I am doing. I hate breaking peoples hearts when it comes to the reality of my health. But I will never let them think my spirit is broke. I think thats what people need to know. My spirit is not determined by my health. I can't let this crazy disease take over my soul. I always try to find things I love to do. Truly love to do. Like cook!! I love to cook. It's my passion. I am always in the kitchen doing something. Yeah my food allergies sorta force that to. But I love to be in the ktichen and do what i love. Truly do what I love to do. Same with makeup and hair. Which is why I try to stay put together.

I always try to not let my disease take over to much because there is such a difference between the disease and me. Though you come to know the girl and the disease but thats not always how it is. Most people know the disease and the girl and forget that there is a soul and a personality behind everything you physically see. It tends to get overwhelming which is why I am not always in tune to letting people get to know me. I have this block on me thats like eerrrr no no no. But at the same time I let a select few in and will always stop to someone who listens. I balance a fine line being me and letting this silly disease leak thru. Because there are times where it does stop me from doing a lot of things which is crap.

Sorta just random ramblings of the day?? I just wish people who get to know me some days, but at the exact same time I am so so so thankful for the few that has gotten to know ME, the girl behind the disease.

Short little rambling for the night
Love Yall
~Poppet

Life Is Beautiful

I do not get on FB much anymore, it's a source of my anxiety and access to toxic people really easily. So I stopped going on my news feed. I popped on there today to Farm (hush) and was scrolling thru feeds, and I realized how many people truly care. I remember telling Wonder Woman I barely know anyone, and she just told me I would be surprised how many people actually care and well I am to say the least. I saw the amount of hits I got, I saw the amount of people who stood behind me, who cared about my story. The sad reality that I face. 

But here's the thing, I have learned how truly beautiful life is. I could see this disease as a death sentence or I can see what it can teach me. It taught me that...

Makeup can wait, that purring kitten asking to be loved is your FIRST priority. She needs you, your makeup doesn't. Pet her, pick her up, and love her. 

Gaming can wait. That text "can we hang out" is way more important then sitting in front of a TV. That connection with the person next to you is more important then anything. 

Put your phone down!! I pull what I call the "All Father" keep the phone in your car. You can't talk to a complete stranger at Starbucks if your to busy texting someone back. Now yes a lot of my communication is thru text, especially to those very close to me. But you never know who is standing next you that can need your attention. 

Follow your heart. Do you have a passion?? Go find it, go do it. Life is short, you might as well spend it doing what you love. I love to sew, and cook. So I try to make sure I do it on the days I feel well enough to do it. I use to drum and no longer able to keep up with it. 

Do. Not. Judge. You never know what is behind the persons look and their story. Though mine is written all over my skin with ink. No one knows this they just assume I am a horrid person. Except my artist the first time he met he made sure my work schedule was clear. I automatically loved him!! 

If you have a once in a life time chance to do something... DO IT. That oppurtunity may never come around again. Why risk that?? 

Let people know how you feel. Good or Bad. And if its bad say it anyways you may never know who will truly understand. I have found this out for myself so many times. It always breaks my heart to tell people I am not doing so great, and they always fill with encouraging words. They always assure me that they loves me and they are here. 

Never wait for someone else to do it. No matter what is it. Because if not you who else?? What if that "who else" is no one and nothing ever gets done?? Take the initiative to stand up for some, whether its on the net or in person. You never know you could affect someones day. 

Always know life is beautiful, even in the hardest parts, even when your on your knees in tears, theres never a Rainbow with out rain. Keep holding on. You can always private message me, I will listen, I can't promise answers but I promise I will listen. You have to go thru the storm to see the rainbow. 

 

Love Y'all

~Poppet

Forgot the Doxi

Last night I forgot to take my Doxi which is an antibiotic which keeps the infection in my lungs under control. It hasn't left in over a year so I am on and off it quite a bit. I can only manage about 4 days off of it. and about 2-3 on. I had woke up last night to take it and I forgot it!! I woke up this morning rather earlier as I needed to get injections today and I felt how tight and junked up my lungs were. The sudden realization you forgot your meds is so terrible. Your first reaction after I messed up is today is going to be terrible, then I remember I had steroids!! So I took one of those and some benadryl let Wonder Woman know what I did and my plan so she is aware so when I start to tell her whats going she can't say "well you should have..." nurses never stop being nurses. I kept my oxygen on while I was doing my makeup which alerted me to needing the steroids. Which I avoid those cause i get so mad on them. Which I tried to put all this out of mine. I finished my makeup and got ready. Which today was not terrible at all, I ended up with a Marvel game on the Wii U, and I also got the insurgent movie. I am sure you have heard my rants before about these movies, and I actually did like that book, and was looking forward to seeing it. It was terrible and nothing like the book, poor Wonder Woman... I started coloring and such to calm down a bit, and uhh I am no longer allowed to watch it with her lol.

So after I got home I spent most of the day propped up in my chair, which is the best thing I could do and I stayed on my oxygen to keep me from getting to short of breath. I can't afford to have poor health at the moment because I have things I need to do, responsibilities I need to be in charge of. So I am bound and determined to make these obligations, not only because its stuff I love to do, or to be with people I love but because as long as I have something to look forward to, it helps keep my spirits up. I also have a tendancy to search things out for me to do. I am also adding to the list to make sure disabled people are treated just as lovely as people who are not disabled. I want to let people know I can do what they can, and they need to know what a blessing it is to do simple things that most people seem to take for granted.

But I must get off here it is Deadliest Catch Tuesday!!
Love Yall
~Poppet

And I think to myself what a wonderful world

Today has been insanely busy but has been an absolutely fabulous. I had ran errands with Wonder Woman and we went to the Uni to get her check and I got to see all the lovely people there and got to get a smoothie!! I love Strawberry Limeades, and there a treat because I only get them when we go to the Uni because I know they are safe. We went to finish are errands, and then I got to see the All Father.

He picked me up and took me to the park today and we got to hang out for a bit which is alway awesome. He has amazing insight about things and I also go to see how much the park I grew up with changed!! And the water was right there and I got see it which I just love the water. We parked in a few different areas and I got to see a few different views of the park and we got to people watch to which is alway fun. We ended up watching someone walk for exercise, and he pointed out that the person walking has no idea how lucky he is because he is doing someone that not everyone is capable of doing. The thing is though he is SO right!! Now if we could just get so many people to truly not take anything for granted you how amazing this world would be?? You know how amazing we could be?? Our potential?? This is exactly what I want people to see, how truly blessed they are to do something we normally take for granted. We of course talked about other things and he always gives me a wonderful insight on things and its always nice to spend time with your family. I have always been blessed to call him the All Father. My sweet Rubes the Cat got to see her daddy to. Shes a feisty little thing but loves when he comes by and always sneaks out to make an appearance.

So after I was dropped off and started dinner, Gma came up to me and told me I want 6 shirts that your selling... What?!?! OK I can do this. I have been a bit worried about selling 20 to get them printed but we did it!! I still have to get some for Me, Wonder Woman. and Pixie Mom. But we did it!! We sold 20!! And I now have this image of Little Red Hats wearing shirts with skulls on it, which so makes me giggle but its awesome!! And I got this lovely text with a gorgeous ship which I think i need it somewhere on my body though I am sure that would be really expensive and lately all my money goes to medical cost.

But I guess I best get off of here, Rubes is quiet demanding of her purr time. And I always make it a point to make time for her and my family. Before I go I want to leave you with this. I would not be able to stay strong with out any of you!! You are rocks, you are my strength, and my reason to fight on. I would never be able to do this with out the support from all of you. Most of you I know and I will never be able to thank you enough for everything you have done and all you have sacraficed to give me a quality of life I have all but lost.

Love
~Poppet