Whoops!!

Well, I am on crutches. Keep getting yelled at by Wonder Woman and Granma "Would you just ask for help??" What is "help"?? lol Yes I have that stubborn attitude of I can do it myself. And why can't I?? I use oxygen on and off and IVs everyday. Well its much different while your on crutches. So I break here and just ask for help. I am sure you are wondering how in the world I did this?? Well I was doing yoga... Twisted and didn't think much of it. Next day Wonder Woman said don't exervise on it and glad I listened. The morning after that, I was in the ER with a swollen ankle, I could not walk on. Its just sprained well badly sprained. Its twice the size of my other ankle. I was checked for a pulse and such she wrote me off as fine, until Wednesday morning when we went in. I bearly hit on my IV pole, and almost passed out from the pain, I sat down then ended just laying down on the floor. Gross I know but it was either that or risk collasping and making the situation worse. So then, I wasn't any better but stable enough to make to the couch then to Wonder Woman. "I am going to pass out" of course she got up,. the cat watched me get sick then she helped me hobble off back to bed.. Almost canceled b12, but she thought better of it, and told me not to do any fancy makeup.

Got my crutches and yesterday we went out and I was like you know I don't have it any me do anything I feel like crap, I don;t know it it's the weather or the pain. "it's the weather pain doesn't stop you" O.o Someone knows me to well... But I seem to be OK today. I am propped up in bed draining my IV. Just annoyed that well I am stuck in bed. I write this off as not fair, diseases I can handle... This?? Well I am dealing well enough. What I want to be doing I guess can wait like everything else. I want to paint my toes but uh, I got told I need to wait until things heal. Which i guess its a good idea. To her more then me, but I listen every once in awhile.

But I guess i'll hope of here
Love Yall
~Poppet

Today the weather has been awful and kinda makes me sick. But I wanted to exercise anyways, I can't let myself go, I really have to fight for my health. So I made the comment to Wonder Woman about all this and she told me "well take your time to get it done" "it already takes me an hour to do 30 minutes of exercise" "if it takes you an hour and a half at least you have done something" OK so she is right. By the time I eve got 30 mins in, she had spent 45 mins on the treadmill and came to check on me. She saw I was doing some minor yoga, and i told her I could not handle cardio at the moment its killing me to do. "Well yoga is still good for you to." You know what?? She is right!! Whether I do yoga, cardio, walk, it does not matter at least I am being active.

We think so often we need to be like everyone else, we need form to a certain standard. But the reality is we don't. Wonder Woman is healthy she can do 45 minutes and be fine, me yeah no I can't do 45 minutes at all. I can do 70 seconds of hula hooping on oxygen and need to sit down for a couple minutes. Which is why it takes me so long to exercise. I just can't make my lungs work they way most do let alone my heart. But I got this haha.

But I guess I need to grab my oxygen for the night
Love yall
Poppet~

Someone told me once "you can tell if a person has a disease" of course me being me goes "really?? and how do you figure that?? and what disease do you think I have" They said by the looks of me I am very healthy. I had to laugh "i wish." People have this idea that we must look sick in order to have a disease. I appear to be a healthy person but the reality is that is not the case. I may not need my oxygen all the time but that does not mean I do not have some crazy disease attacking my body. When I walk you or even talk for that matter. You can not see the stress my heart goes thru, how fast it beats, and at times the pain it causes. You can not see my pail lips because i wear lip stick, and I paint my nails to cover my dusky nails. Some days you can not see my PICC cause I have a sweater covering it.

I bring this up because not everyone who is battling a serious disease can be seen. I have a little handicap placard that I do use. When I park I have people staring at me with disgust. And they watch my every move. Sometimes I honestly stand close to them and start coughing, its very wet and gross. They kinda just look at me... Or there are the days where you just can see how hard it is for me to breathe and make it from point a to to point b. But who are they to judge a person by what they look like. I fought this my entire life because I have always dressed weird. But just because a person does not look sick, does not mean they are not battling a life threatening debilitating chronic illness. Most days you will see me with a tank of oxygen, but others I mange to walk in and out fine. I can't count the times I have walk into oncology, cardiology, or even pulmonolgy and been able to pick out patient or family member. I have been in cardio before they called my name and everyone stared at me was i walked back. Sorry my heart is damaged I need this doc to. Yes some disease are linked to obesity but that doesn't mean someone healthy can not get the disease. Some days it does get frusterating because I can hear people speak about me. I have been known to roll my eyes at them, or just smile and wave to make it obvious i hear them other days I just walk off.

I guess I am really writing this to ask people do not judge someone by the way the look, I spend about an hour trying to look healthy some days. I have a horrid illness and want to at least look OK and just think what if it was someone you loved that was being somedays harassed by people because they do not look disabled.

Love unconditionally and look deeper into the picture that lies before you,
Love Always
~Poppet.

I was so sick this past week, I have no idea what happened. I had hives all over my face, it was swollen, it was affecting my air ways. And honestly?? I think it was a lotion I was using. I stopped using the lotion and the hives dried up and my air ways are not as constricted. MCAD please leave me alone for a bit. Saturday I thought I was doing so much better, afternoon comes around, "my heart is beating so fast I am shaking" I was sent to take liquid benadryl ASAP. And I was fine. I woke up not feeling well either. We had went to get pizza which wasn't that good (normally is awesome) and the farm, coffee, came home and I was awful. Slept for about 5 hours (long time for me) and the next day I was just exhausted. Today though?? Much better. I got a lot of stuff done.

Me and Ms T are coming up with idea for silent auctions, things to sell and so on for the charity I work with. If I have contacted you yet about this and you know please give me time I spent the last week sick.I got bows made, I made some salsa, I got back into exercising, I made dinner, and got some work done on my cross stich and still some how managed to read?? I have been going all day long and it was quite nice. I don't often feel well enough to do that. So it was a nice change. I also cleaned up my medical supplies haha they are every where at times.

This weekend i also learned cold IVs are just BAD. I have refrigerated ones at the moment because there is a shortage on saline. NATION WIDE. My heart almost stopped lol "we can make it but it has to be kept cold" OK that is fine. Ran a cold liter yesterday and I felt my entire upper left are get cold almost numb. I was busy reading and went to move the tube of my chest. The tube was hanging off the side of the chair like it always is because of my bad habit of getting things caught... Looked at Wonder Woman "Did you know the coldness from the IV can be felt inside the heart" I get "the look" ... "No really my chest hurts, its cold and it started with this." I had to grab my heat pad and thaw myself out. It was horrid. I got clearance to pull to bags out the night before. That was just miserable and I am sure it showed on my face. Today they were nice and warm.

I guess I should go finish all my night meds
Love Yall
~Poppet

well hmmph

Well the weather this week has been all but pleasant. We had a tornado yesterday evening and we got a lot of rain, wind, flooding, and of course the change in barametric pressure. And if you have POTS you know this means you just collapse. I was sprawled out in my recliner going MOM I CAN'T BREATHE and her reply?? it's a storm you'll be OK. lol She loves me. So no exercising this week, just lots of time spent in my sewing room. Oh and I had some major hive issues which affected my breathing so that was a no to exercising to. My face is finally clearing up. I showed it to Wonder Woman and she was like benadryl!! So I have been on that for a couple days now. But thats OK i got stuff done in my sewing room. And some work done on Peppers Dragon. I am trying to make this the first night of no oxygen. But in happier news

I am setting up a poker run!! Ride for a Cure for Food Allergies. I am not sure if I have mentioned them on here before but if you know me, you know the list is ENDLESS. And I work with FARE so i figured WHY NOT. Wonder Woman, The All Father, and very sweet friend of mine (leaving her name out because I do not know if she wants her named mentioned) are helping me out. I am hoping to get a big attendance and have a BBQ afterwards. Games, bikes, music, food, and prizes?? what more can you ask for?? Sweet talking Wonder Woman to let me ride?? yeah in my dream I know espically for october. What am I thinking right?? 

But I am going to keep this short tonight I need to go to the farm tomorrow and I hope to get back into my exercise routine.

Until then
Love
~Poppet

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