Have you ever set down to do something and your alarm goes off to take meds or do a treatment?? No?? Well your lucky!! lol if not you know my "pain." I made the mistake of going to the fabric store. Yep i am living in my ice box of a sewing room. I sit down and get ready to sew and bam my alarm goes off... You need to clear your lungs... sighs OK let me go and do my treatments so i can sit back down and sew. I have a ton of PICC covers to make. I am sorta stuck with this thing so why not make the best of it and rock it out with awesome PICC covers. So I am sewing and sewing and my bobbing thread is empty. GRANNDDDMMMAA yeah thats the ONLY thing i do not know how to do, so she had to each me how to do it. I can do everything else tho right?? Which also meant I had to go under my bed which mean i instantly lose my breath. I have no idea why because my Grandma cleaned under it really really well. But I have had a lot of issues with my lungs this past week. Oxygen on 3, and I keep going into an allergic reaction for what seems like no reason but I am sure its MCAD related. Which means the mast cells burst and it triggers off an allergic reaction. So of course I am cutting out patterns and it was getting hard to breathe, and I sit down to catch my breath. Yeah according to Nurse Wonder Woman, your up and working your oxygen is ON. Word to the Wise do NOT argue with an ICU nurse you will NOT win!! At least I am OK tonight. I got a couple things started to :-)

I havent really had a chance to do my wii fit this week because I have either been out and about, running all over campus with 2 awesome people, or I have been running around doing my PICC covers and bows to match of course. Which mean I am running from the kitchen where I cut everything and back to my sewing room. Or digging thru things to find what I need. I am always up and down when I am sewing. I have to get food or drinks lol. Then of course the iPad must be charged lol. I am hoping to get back on to my wii fit tomorrow or thursday for about an hour (30 mins worth of exercise). Its suppose to help my lungs and strenghten them but so far its helping clear which is also a very good thing. i read it was suppose to increase lung capacity but so far it has not helped with that but hey clear lungs are happy lungs and I am not gonna let it stop me. Long term effort can always have a more positive affect. I use to spend an hour in the gym just running but its OK, one day I will run again even if it is with a new set of lungs. Why?? cause I know I have it in me to do it!!

I need to hop off and catch on Deadliest Catch drama
Love Yall
Poppet~

hurricane??

Well, from what I know, the hurricane was not that bad at all. I have been thru and slept thru much worse. But my lungs have been attacking me for over 24 hours. When my POTS flares, I tend to dehydrate more then when its stable. Which in turn means that my lungs just kinda crap out on me and do not want to work. I at least have my oxygen on 2 again, well i have been on and off of it all day really. My precious kitten slept next to me all night, as close as she can get with out laying on me. I would move and she would move. She really has to be my guardian angel. I thought she had disappeared to see Wonder Woman last night to, but not she was under my bed. I do not know how she sense's my breathing but she does.

From what I have heard there really is no damage in this area. I know the beach got hit pretty hard. I am so thankful that we are not down towards the beach, who knows what my lungs would have done with out power. Now yes I do have oxygen tanks, and I do have the All Father on back up if I ever need him. He has this RV that runs on a generator, which means I can have air and oxygen at the ready. Cool air is essential to keep someone with POTS stable, especially one that is saline dependent. I am not so sure an RV is where I want to be in a hurricane but I know those two would never put me in harms way.

Oh and I would also like to let everyone know, that so far I have been infection free since April. I finally have the proper diagnoses and tons of help or well devices for proper treatment! I am beyond thankful for all that pushed to get this diagnosis. I am also no longer on 24 hour oxygen and the exercise routine has been steadily improving. I am determined to keep my lungs strong :-)

Oh and MORE good news lol, Wonder Woman has given me permission to talk to Superman and Dr A about going on roller coasters, i have lived with this all my life and they never bothered me before. She is also letting me find, and suggestion way to get a really good water tight  PICC cover and taking me to the local water park!! Oh of course there are strict stipulations because getting pass a good ICU nurse is IMPOSSIBLE!! But I love that we made it this far, to the point i can actually do things I love again.

Until next time though
Love Yall
~Poppet

Today was well rough. I haven't needed oxygen bad, but it was rough none the less. Have not been able to exercise in three days. One day, Wonder Woman said no! I needed oxygen to make it thru the night, the next I was at "work" most of the day (which i love), then last night my PICC has been really hurting!! I mean to the point I asked for a dressing change. I usually try to push it off as far as I can. I really hate dressing changes. "Do we have to." "Is your dressing damaged" Well... Yeah give it 3 days I am patching it up lol. Turns out I have blisters on my arm, from MCAD. So I took a little to much benadryl (close to 50) So exercising today would be BAD. I would compare myself to a zombie. Stared at my iPad screen for a couple minutes wondering what I was doing! Bed time??

My Grandma saw me with my heating pad, she was like in pain again?? Hasn't really stopped, but I am OK. She told me she will not let herself complain because she see's what I go thru all the time. Which I guess to me its nothing but a daily life now. I guess other peoples views are different. She watches me fight, go in and out of the hospital, doctor after doctor, IV after IV, treatment, oxygen, hand full of pills... I think nothing of it, because doesn't everybody do it?? After all of this, I realized I am not the only that goes through this life. People around me are greatly affected.

I have often said "I go thru this you don't," when I am beyond frusterated with the "i get it" after days of misery. But the truth is they really go thru it with us.  Why do I say this?? Because they honestly do. We all breakdown and snap. Someone has to be there right?? We have our "go to" person. They are there with us thru it all, they cry with us, rejoice with us, cope with us, and hold our hands. I have watched my family just break down because they thought I was gone. I had my Dad hold my hand until 3 am once and Wonder Woman slept in a chair by my bed for a week. If thats not going thru this with me I don't know what is at all. Wonder Woman has sacrificed so much for me. It's very hard for them to watch someone they love, go thru so much and not be able to do a thing about it. I am sure its even harder for a nurse. They KNOW how to treat you but they can't. Or you and they have used every option., and there is NO sugar coating and protecting them from the reality of your life. I can tell my Dad (who I call the All Father) I am fine and he'll say OK she's fine. Wonder Woman, well "I can tell by your breathing your not ok." Just. Erg. Sighs... FINE! lol

I truly am so thankful for the people that go thru this with me, help me, and care for me. Even if it is just grabbing me canvas for sewing, or texting me thru out the night, skyping/factime/oovoo. I love them my warriors.

But my show is one. Deadliest Catch!! Gotta let mom know the hot captains baot is about to catch fire
Until next time
Love Yall
Poppet~

So I got clearance to do mild exercise! So I am!! I mean there is no good reason, or any excuse not to exercise. There are so many benefits, especially for someone who battles lung disease and POTS. Theres to much that can fight against me, and with a health strong body its much easier to fight back. Think of what it can do for us! Even you healthy people that read this!! It helps bring more air into the lungs, it improves circulation, builds muscle,  and helps strengthen the body. I have never been lazy, and there was a point I could not exercise because I was sick. But now I can!! Of course there are stipulations. You exercise WITH oxygen at all times, and you have to be doing good. If I need oxygen outside of exercising its a sure sign I can't exercise that day. But its OK. We will make it thru.

Nothing to much has been going on other wise, resting, or just well trying to keep busy. I have been doing a lot of sewing. Its been very very hot here. Heat and these disease do not go hand in hand. I went out one day to get medicine., and I need pretzels but that meant walking across the store... Yeah... that was just to much. I think I posted about this though. Or, I atleast told someone about this. I'm just so exhausted at this point.

Until next time!
Poppet~

I was told once, "you can tell when people have lung/heart disease." But can you really?? End stage, probably. I am sure the edema from heart disease is a give away, but how are you sure it IS heart disease. What about people that are not quite end stage, but not well enough to function as a normal person??

A little known fact about me?? I have a rare form of lung disease. I am on oxygen as needed. I also have a form of heart disease that most people do not believe i have because "im not overweight" or "i don't eat things that are bad for me." I am one of those people who does everything right and my heart gets so much stress, I have been diagnosed with coronary artery disease! I also have 3 forms of lung disease. Now to must that have seen my pictures, would not know I have a disease. Not until they see the oxygen and the IV. But the fact is, my lungs are crap. I was almost in tears today because I wanted pretzels, but I wouldn't walk across the store to get them. Wonder Woman offered "but thats so far." We are talking maybe 4 aisles in the grocery store.  That was me on oxygen. She stopped me and goes "weathers getting to ya huh??" Ah yes! the key factor in my life. FOOD!! I will stay in the kitchen all day, eat constantly, and go a distance for food. Off topic...

Most days I walk in the store, and no one knows my troubles... I left my oxygen in the car, and the effort it takes to walk that store is more then I can handle. I have been known to sit on the floor... But I appear healthy. I am labeled as "lazy" or "abusing the system" (i park handicap) but the thing is. I am not healthy at all. I live with devistating lung disease, i live with a disease that has taking over my life, well as much as i let it. I am often riduculed with out my oxygen because they do not know whats going on with my heart, or my lungs.

I make it a point to look nice when i go out, I do my hair, my make-up, lipstick, the works. I put on nice clothes, why?? because I want to look better then I feel. And judgment from a person that doesnt know me?? my struggles?? seen me in a hospital bed fighting for life?? Take a time to ask what is wrong!!

Though I did have someone stop me once, "i see people like you all the time, i pray for you and wish you better, and that you will get better." Those people in my eyes are angels. I truly apreciate the people that see me as the sassy girl that loves KISS. They are my heroes.

But I must go get a dressing change because as always its all but destroyed!!
Love Yall
~Poppet

about me??

Some days I just wish I had a second mucolytic (mucus thinner). I have ONE, that we know works and is safe, and 3 devices to help break it up. There's also good old fashion chest PT, where some one (Wonder Woman) cups there hands and pounds on there or well my back. Then there is also the option of oxygen, and that's where we are today. Is oxygen! lol It's ok its as needed and there is NO arguing with a good nurse. "I can see you breathing" O.o sighs... thats OK. Off to better stuff??

I don't think I ever really told you about me, this blog is going to become more about my life with my disease of course. But I don't want people to think I am my disease. Which I keep seeing all over FB "my disease does this to me, and my disease does that to me," "it has taking over my life." Now I do admit my life is IV's, breathing treatments, oxygen at times, and tons of pills. And thats OK. But here's a little about me:

I am Poppet, I got my name from a very good friend of mine, she also calls me Tinker Bell. I am the crazy little blonde girl with teal and pink hair. I have been dying my hair since HS, and I still love it. Tattoos are my pride and joy, I have 4 and would love to get more! I have a skull on the back of my hand, and the decorate everything in my room. I mean EVERYTHING. They are on my  desk, white board, up with my duck collection... I also love ducks!!! I took my KISS ducks to meet the giant duck recently at our local museum. It was the coolest thing ever, which is another love of mine.

My life also revolves around music... All kinds, metal, rock, classics, punk... it keeps me going. I use to be a metal drummer and the daughter of a metal drummer (local band.) I am the daughter of a nurse, who raised me around music. We have been to so many KISS and Motley Crue concerts together and I promise she is what keeps me going some days. There is no getting around her some days thought because she knows!!

Then there's animals. I love them! I have a cat and dog, and then I have 2 kittie siblings. They are my entire world. There is nothing sweeter then your dog running up the fence and giving you kisses, or purring kitten laying next to you. They really are the calm in this crazy life. My brat is fiesty and mean at times but shes the sweetest little thing ever!

But I guess i must hop here for now. I need to bake some cinnamon buns!! YUM!
Love Yall
~Poppet

Two Years

Can you believe it has been two years, that I have had an IV. This wednesday will be two years I have been on home health care with skilled nursing. Which Wonder Woman ever so kindly took over. Of course I am forever grateful for that. I do not like "strange" nurses doing my dressing. What I mean by that, if I do not know you that well I really do not want you to mess with it, due to allergies its not per policy as it should be, however it is Superman approved and he is an amazing doctor. It has been a long journey but it has been an amazing one.

I have been able to teach nursing student, and some nurses about my disease. I appear aptypical but can be in a life threatening position. The great one's have treated me and got me better, the others listen enough to get me stable. I have been to Texas, South Carolina, Northern Virgina, and many places around here. These are things I could not have done with out all these amazing people that surround me. They busted their butts to get me better. Fought for me, and with me. I could never begin to thank these people for there endless care and support. Some I mention by name, some have nicknames, and some are my hero's. Some do not have tradition super hero names, but they have there own nicknames and know how much they have blessed my life.

Life is a true blessing, when we take the time to put our phones down (me included) and talk to people we can get to know some pretty amazing me people. I never thought I would truly appreciate being out in the sun and see it as a blessing from God. But it is. I remember living in the hospital weeks at a time (and i still do) i realized how much I had taking for granted. Like the sun beating down, the smell outside after the rain, or wet dog wanting kisses. Find the beauty in life it really is there. Hug your parents, your friends, your animals. Text back and call back. I have seen others amazing stories and it also made me realize what I have taking for granted.

I send my friend a picture of my toes hot pink a couple weeks ago, her response was "yes its the little things." I am sure some would have just had been "oh thats cute" but she truly knew it meant I had enough circulation to paint my toes!!! How awesome was that?? Or the smile on Wonder Womans face when I walk the mall no problem?? With my oxygen of course. Seeing how proud she was!!

I was recently in for pnemonia, I was able to walk the hallways, she pushed my IV pole and oxygen and took me to the trauma helicopter to see me smile. Why?? Because she knew my love for trauma surgery, and helicopters. Even better?? THE RIVER!! THE BOATS. Where my heart belongs, and how content she was. That's what truly matters in life. Its truly the precious things in life. Smile, love and be happy.

Till next time
~Poppet