Somedays people remind me of what I use to love to do. Well "use to." They talk to me and ask if I remember how much I use to love swimming or amusement parks?? How much I loved being outside or on the water... Well, I just remind them nothing has changed. I can not tell you how many times I text the All Father and ask him to take me on the boat, or how many times I ask Wonder Woman to take me to amusements parks. And swimming?? Well I have a line in my arm. I can't get that wet and public pools are littered with bacteria and germs. Yes I know chemicals are there to but GERMS, thrive there and in heated pools?? Well it bread the pneumonia bacteria. I have not changed at all as my soup boils over. I also can not tell you how many times Wonder Woman reminds i can not do concerts (heavy metal, classic rock) because people smoke and the heat. Not to mention all the piro on stage!!
Nothing about me has changed, and when people ask me these questions I have to stop and go "do you know me anymore" nothing about me has changed, my love for life and adventure is still here. If you'd let me, I would hop on an ATV and let me loose in the woods. These are things that I still love to do. I adore being outside, and that girl is still in me and I just wish people would realize this at times. Then I have to stop and think. The people that truly love me and know me, knows my love for the outdoors is still in me. That there is no better feeling then the wind in my hair, the smell of ocean, or the rustling of leaves in the wind. I am truly thankful for all the time my parents spent with my outdoors, and part of me thinks thats why Wonder Woman made a deal with me to go see the ocean while I was in SC. I can sit for hours on the beach, just listen to the waves crash the beach.
Nothing has changed, and every chance I get I go and do what I am able to do. My spirit and soul will never change.
But my soup is done, until next time
Love
~Poppet
Wednesday, August 27, 2014
Friday, August 22, 2014
Vacation
I am sadly home from vacation, though I am happy to be back to my kitten, grandma decorated my room for me while I was gone. I had asked her a few weeks before I left if she would put dry eraser shelf paper on my door so I can draw/write on it. Well she had it everywhere which was awesome. But back to vacation. I do miss getting up and sitting by a pool, I miss the nice area to do my makeup, and the short walk to the beach. Though I do not miss the silly bug that bit and gave me an allergic reaction.
On my last day there I had met a lovely lady, who had introduced me to her family who has POTS. It was really nice knowing that there is someone out there with my disease and knew what I had gone thru all these years. It was also nice to see someone have the same symptoms as mine. Had a similar treatment. I also found out the one knew some one that was amlost 50 with cystic fibrosis. Which also gives you hope. I really have not been so relieved to talk to a stranger in some time. And though I come off at times as very closed off I am actually a very open person. You just show I can be myself around you. I had met them after I locked myself out of my room and intern the pool (the horror) so my SPOT was open. OMG I was off to go out with Wonder Woman and Dr Dean for dinner and someone was in my SPOT (yes I am that person). I had sat down to read with a full bag of saline, and she had asked me what I was doing and I explained my disease and she asked if I would meet everyone else. Of course! lol
I had gotten to talk to them for a bit, and she had asked about dating. Which is quite a pain when it comes to being chronically ill. Being that I live with IVs, oxygen, PT, treatments, and some days life kicks you down. I had explained my current situation and why I had broke up with some one, my feelings for someone else who had consistently been in my life. It was so amazing to here from a stranger that I had indeed made the right decision, and I should persu the other person. I glad she understood what I was going thru and had a similar story as I did. Some days the relief of not only knowing you made the right decision but someone like you in the world is what you need. But that's not all I learned from this vacation.
I learned how to travel. OMG what a pain at times. If you have a disease where you lungs get congested. I know people with chronic infections can be an issues on top of CF. STOP AND WALK AROUND. 8 hours in a car with out PT, Vest, treatments does take a toll on your body. Your lungs back up, you get a fever, you get sick. You need to more then just walk to the bathroom. You need to be up and moving around. And carbs do not keep you "OK" for an extended period of time with POTS, you need a lean protein base. And PB does not count the way I thought it would .
On my last day there I had met a lovely lady, who had introduced me to her family who has POTS. It was really nice knowing that there is someone out there with my disease and knew what I had gone thru all these years. It was also nice to see someone have the same symptoms as mine. Had a similar treatment. I also found out the one knew some one that was amlost 50 with cystic fibrosis. Which also gives you hope. I really have not been so relieved to talk to a stranger in some time. And though I come off at times as very closed off I am actually a very open person. You just show I can be myself around you. I had met them after I locked myself out of my room and intern the pool (the horror) so my SPOT was open. OMG I was off to go out with Wonder Woman and Dr Dean for dinner and someone was in my SPOT (yes I am that person). I had sat down to read with a full bag of saline, and she had asked me what I was doing and I explained my disease and she asked if I would meet everyone else. Of course! lol
I had gotten to talk to them for a bit, and she had asked about dating. Which is quite a pain when it comes to being chronically ill. Being that I live with IVs, oxygen, PT, treatments, and some days life kicks you down. I had explained my current situation and why I had broke up with some one, my feelings for someone else who had consistently been in my life. It was so amazing to here from a stranger that I had indeed made the right decision, and I should persu the other person. I glad she understood what I was going thru and had a similar story as I did. Some days the relief of not only knowing you made the right decision but someone like you in the world is what you need. But that's not all I learned from this vacation.
I learned how to travel. OMG what a pain at times. If you have a disease where you lungs get congested. I know people with chronic infections can be an issues on top of CF. STOP AND WALK AROUND. 8 hours in a car with out PT, Vest, treatments does take a toll on your body. Your lungs back up, you get a fever, you get sick. You need to more then just walk to the bathroom. You need to be up and moving around. And carbs do not keep you "OK" for an extended period of time with POTS, you need a lean protein base. And PB does not count the way I thought it would .
Monday, August 18, 2014
I just got back from a short beach visit (as I am sure you can tell by my last post). I am sitting here cooling off, its very hot here and my diseases do not like it. I am off my oxygen again. Downing what seems like way to much water, and throwing chocolate chips back like they are shots, and munching on pretzels.
A few people have stopped me while I am here, asking about my IV. I have explained it to them with a smile. As most people do not know what my diseases are. Many times thru language barriers. But they truly care and ask if I am ok. Espically the one's that are not from America. But most people here are nice. The lady who was cleaning today point at my IV and asked about it. Thru a language barrier she understood and told me she'd pray for me and to never give up. I promised I would not. I had point at my lungs and told her it helps me breathe. That is true compassion, she does not know me at all. She just saw the weird girl sitting on the sink doing her makeup with tubes connected.
I spent the morning at the pool reading, and laughing at the sites I saw. At times sending Sif messages showing her the pics behind the stories. Wonder Woman hung out with me during lunch and ate pretzels with me, drank some coffee, and I BEGGED her to let me go the beach. Well I did yesterday, she saw how much I needed to go there, she knows my soul is linked there cause hers is to. So she said after my last liter you can go. So what do I do, put my pole in a chair sit as low I can to make it run. It ends "crap a breathing treatment" haahah i finally made it to the beach!! YES!!! OH MY GOSH it put my home beach to shame. Such a gorgeous clean beach. And I truly got to enjoy it. I got to feel the sand in my toes, that was burning me but I got to sit there in the sand. I had found went sand to sit in so it was a lot cooler and I took it all. The true beauty. The true meaning of life. How beautiful it is we just have to find what makes us see it. I put on my oxygen and just sat there. There is nothing more beautiful then sitting on the sand and hearing the crashing waves. Well one thing is but different story different day.
When I was just sitting on the beach I had quite a few people stop and stare at me. I am truly happy just sitting on the overly hot heat taking in life. They don't seem to get it but thats OK. What other people think of me does not really matter. I am OK with being the odd girl smiling stupidly at the crashing waves. Laying a chair with my nose in a book. Or just sitting down stairs stabilizing while people look at me. IVs, Oxygen, nebs, are all a part of my daily life. To sit on the beach and relax or by the pool, truly makes all that "crap" worth it.
But I guess I best get off here, I am in the middle of a good book.
Love Yall
~Poppet
A few people have stopped me while I am here, asking about my IV. I have explained it to them with a smile. As most people do not know what my diseases are. Many times thru language barriers. But they truly care and ask if I am ok. Espically the one's that are not from America. But most people here are nice. The lady who was cleaning today point at my IV and asked about it. Thru a language barrier she understood and told me she'd pray for me and to never give up. I promised I would not. I had point at my lungs and told her it helps me breathe. That is true compassion, she does not know me at all. She just saw the weird girl sitting on the sink doing her makeup with tubes connected.
I spent the morning at the pool reading, and laughing at the sites I saw. At times sending Sif messages showing her the pics behind the stories. Wonder Woman hung out with me during lunch and ate pretzels with me, drank some coffee, and I BEGGED her to let me go the beach. Well I did yesterday, she saw how much I needed to go there, she knows my soul is linked there cause hers is to. So she said after my last liter you can go. So what do I do, put my pole in a chair sit as low I can to make it run. It ends "crap a breathing treatment" haahah i finally made it to the beach!! YES!!! OH MY GOSH it put my home beach to shame. Such a gorgeous clean beach. And I truly got to enjoy it. I got to feel the sand in my toes, that was burning me but I got to sit there in the sand. I had found went sand to sit in so it was a lot cooler and I took it all. The true beauty. The true meaning of life. How beautiful it is we just have to find what makes us see it. I put on my oxygen and just sat there. There is nothing more beautiful then sitting on the sand and hearing the crashing waves. Well one thing is but different story different day.
When I was just sitting on the beach I had quite a few people stop and stare at me. I am truly happy just sitting on the overly hot heat taking in life. They don't seem to get it but thats OK. What other people think of me does not really matter. I am OK with being the odd girl smiling stupidly at the crashing waves. Laying a chair with my nose in a book. Or just sitting down stairs stabilizing while people look at me. IVs, Oxygen, nebs, are all a part of my daily life. To sit on the beach and relax or by the pool, truly makes all that "crap" worth it.
But I guess I best get off here, I am in the middle of a good book.
Love Yall
~Poppet
As I sit here on the beach, i truly realize a few things. Life is truly beautiful, CF and POTS is also away of life. I see how people look at me. Pity the girl, but what they dont understand is there is no better way to spend time out of the house, sharing this expeirence with you. I have the sun warming my skin, wind ruffling my air, the sound of waves crashing the beach and saegulls singing. We are all happy contwnt and most worry free. Gorgeous blue sky and a few clouds. I need to walk back and get out of tbis sun but i wanted to share the beach with you.
Sunday, August 17, 2014
It has been a long day, and really how do you get mucomist on your laptop?!?! Anyways, I was up extremely early. And traveled all day!! Thankful I live with Grandma so there is someone to watch my sweet kittie girl. Not even half way here "i miss my girl" lol...
Traveling with me is a pain in the butt. I was not connected to my IV all day today, which is not good. My lungs are paying the price though I am running it now. My lungs were stiff, I was short of breath, when I got out of the car I was short of breath on oxygen. I was so ready for PT and a breathing treatment, we were getting the stuff out of the car. Wonder woman can i please go up to the room and grab a treatment?? I was asking for a treatment?? I avoid them, put them off, push them off as late as possible. Today I needed them, I even used an inhaler in the truck to hold me over. And I think I ate a stalk of celery. Sitting here ate a half can of almonds to lol. The good thing of traveling with me?? Very few breaks. All worth it
But I went to sit by a gorgeous pool, sent way to many pics (I am still sorry), and cooled off. Well I had to get all cute and make an apperance as a guest. I am here with a university, Wonder Woman is working and I am taking advantage of pull time, or sitting inside, the works. And I had to bow out gracefully before my allergies flared up. I am so nervous around people because I can't handle smells. I am like Wonder Woman, my lungs hurt, I don't want to use my oxygen, FINE!! Yep she always wins those arguments. lol I really do hate wearing it sometimes. I hate explaining why I look healthy when I really am not.
But it was really nice spending the evening by the pool relaxing, it's not something I ever get to do. I am sure I was sight sitting there with the IV, taking selfies lol, I also had my oxygen around me somewhere, and a purse filled with food haha. But I am exhausted.
Love yall
~Poppet
Traveling with me is a pain in the butt. I was not connected to my IV all day today, which is not good. My lungs are paying the price though I am running it now. My lungs were stiff, I was short of breath, when I got out of the car I was short of breath on oxygen. I was so ready for PT and a breathing treatment, we were getting the stuff out of the car. Wonder woman can i please go up to the room and grab a treatment?? I was asking for a treatment?? I avoid them, put them off, push them off as late as possible. Today I needed them, I even used an inhaler in the truck to hold me over. And I think I ate a stalk of celery. Sitting here ate a half can of almonds to lol. The good thing of traveling with me?? Very few breaks. All worth it
But I went to sit by a gorgeous pool, sent way to many pics (I am still sorry), and cooled off. Well I had to get all cute and make an apperance as a guest. I am here with a university, Wonder Woman is working and I am taking advantage of pull time, or sitting inside, the works. And I had to bow out gracefully before my allergies flared up. I am so nervous around people because I can't handle smells. I am like Wonder Woman, my lungs hurt, I don't want to use my oxygen, FINE!! Yep she always wins those arguments. lol I really do hate wearing it sometimes. I hate explaining why I look healthy when I really am not.
But it was really nice spending the evening by the pool relaxing, it's not something I ever get to do. I am sure I was sight sitting there with the IV, taking selfies lol, I also had my oxygen around me somewhere, and a purse filled with food haha. But I am exhausted.
Love yall
~Poppet
Thursday, August 14, 2014
I should be organizing and cleaning for my trip, but I am doing my nails like a typical girl lol. I got these sticker nail polish things that are asthma friendly and look pretty. Saves me sometime not letting it dry. I am sure this a first world problem however it does not bother me. But on to more important things.
I had PFT testing today, and I am not so confident that its good, but I am pretty confident its not severe damage. knock on wood right?? lol My RT was such a sweet person and recomended me getting into smoothies for nutrition. I am like hmmm, if I get a Ninja or a Bullet (whatever Wonder Woman wants) it can also act as a food processor, which in turn can grind herbs for me. So OK!! I think she learned some from me to today. That sometimes patient appear attypically. Which is one of my major fights in the medical world. Not all patients appear as stated in textbooks. I have a non text book diagnosis of my one lung disease. But that is OK, people like her listen!! And that is what I love about my team. They listen. I wish more medical professionals listened the way she does. I had one time I went to the ER, wasn't breathing, normal Sats tho, so the nurse refused to treat me. Wonder Woman corrected that of course. But it is scary to think about other people who do not have a Wonder Woman by there side. I sometimes complain about having a nurse in their like I do. Like today "put your oxygen on and put it on now, you will not be OK, you had no treatments today..." But... FINE!! lol Most days I am extremely thankful and feel truly blessed, just not when I don't want to listen when I should. Nurse trumps patient... Really though you can NOT argue with a GOOD nurse. Doctors even the good one's you can get sometimes get your way.
I also had bone density this week, and my Radio Tech (also RT lol) looked at my arms, and at me, and goes they tell a story don't they (speaking of my tattoos). I said yes, a deep one, and explained my battle with my lungs, my heart, how I can't do as much as even though I try like hell. Which is what my fairy does represent. Sometimes you gotta take a leap and pray it all work out. Which most times it does. Wonderland is my escape and can mimic the stages you go thru with your diseases, but at the end you to believe in the impossible and then make it happen. I am doing things I never thought were possible. It made me happy for someone to look at me, and go you have a story and I can tell, btw you have beautiful work. Espically in a world where people go "your chronically ill how dare you" really?? seriously?? watch me!! lol
Once again Wonder Woman is on top of me to get stuff done, as if she KNEW I was on the computer listen to music :-) Some days you just need songs on repeat to make you smile.
Love
~Poppet
I had PFT testing today, and I am not so confident that its good, but I am pretty confident its not severe damage. knock on wood right?? lol My RT was such a sweet person and recomended me getting into smoothies for nutrition. I am like hmmm, if I get a Ninja or a Bullet (whatever Wonder Woman wants) it can also act as a food processor, which in turn can grind herbs for me. So OK!! I think she learned some from me to today. That sometimes patient appear attypically. Which is one of my major fights in the medical world. Not all patients appear as stated in textbooks. I have a non text book diagnosis of my one lung disease. But that is OK, people like her listen!! And that is what I love about my team. They listen. I wish more medical professionals listened the way she does. I had one time I went to the ER, wasn't breathing, normal Sats tho, so the nurse refused to treat me. Wonder Woman corrected that of course. But it is scary to think about other people who do not have a Wonder Woman by there side. I sometimes complain about having a nurse in their like I do. Like today "put your oxygen on and put it on now, you will not be OK, you had no treatments today..." But... FINE!! lol Most days I am extremely thankful and feel truly blessed, just not when I don't want to listen when I should. Nurse trumps patient... Really though you can NOT argue with a GOOD nurse. Doctors even the good one's you can get sometimes get your way.
I also had bone density this week, and my Radio Tech (also RT lol) looked at my arms, and at me, and goes they tell a story don't they (speaking of my tattoos). I said yes, a deep one, and explained my battle with my lungs, my heart, how I can't do as much as even though I try like hell. Which is what my fairy does represent. Sometimes you gotta take a leap and pray it all work out. Which most times it does. Wonderland is my escape and can mimic the stages you go thru with your diseases, but at the end you to believe in the impossible and then make it happen. I am doing things I never thought were possible. It made me happy for someone to look at me, and go you have a story and I can tell, btw you have beautiful work. Espically in a world where people go "your chronically ill how dare you" really?? seriously?? watch me!! lol
Once again Wonder Woman is on top of me to get stuff done, as if she KNEW I was on the computer listen to music :-) Some days you just need songs on repeat to make you smile.
Love
~Poppet
Tuesday, August 12, 2014
Traveling with the chronically ill.
I know we have all packed for a trip and thought "Oh crap!! Do I have everything??" Theres a whole new level to this when you can't find the closest wal-mart and pick up what you need. Yes, we need more then stuff we can pick up from our local pharmacy. Someone of my stuff comes specality pharmacies. Meaning they have to order it, if they are allowed to, and get it to me. I need portable oxygen, IV supplies, IV poles, all my meds, respiratory devices. I am sure you read this and are thinking "Are you crazy, your traveling with all that" Why yes, cause my nurses are top of the line, and love deeply and make sure I have a life outside of a disease. And my food allergies?? I am a Chef give me a two days and i'll have stuff packed for me and the momma. Wish I had thought of that when me and Sif did our road trips. Live and learn right?? You truly do not know road tripping until you travel with me lol.
Me and Wonder Woman have done this before, so there is not much we worry about. I am pretty good with staying safe and shes awesome at going "um did you think that thru" "do you want to end up in the hospital" "have you lost your mind" you really got to feel bad for sometimes. I often get the mind set, "Nothing can stop me" and she's not far behind me making sure I do think things thru. However!! I was way to excited for this. I can get in the pull as long as its not above my waist. OMG, I more then likely will not because germs freak me out. She also gets to watch me chase after weird things and take pictures. In texas I took a pic of a gigantic centipede cause i never seen one before.
I am really looking forward to this trip, I am so excited!! I use to travel all the time, with her to.
But I guess I best get off of here. I have a busy day again tomorrow and for the rest of the week really.
Love Yall,
~Poppet
Me and Wonder Woman have done this before, so there is not much we worry about. I am pretty good with staying safe and shes awesome at going "um did you think that thru" "do you want to end up in the hospital" "have you lost your mind" you really got to feel bad for sometimes. I often get the mind set, "Nothing can stop me" and she's not far behind me making sure I do think things thru. However!! I was way to excited for this. I can get in the pull as long as its not above my waist. OMG, I more then likely will not because germs freak me out. She also gets to watch me chase after weird things and take pictures. In texas I took a pic of a gigantic centipede cause i never seen one before.
I am really looking forward to this trip, I am so excited!! I use to travel all the time, with her to.
But I guess I best get off of here. I have a busy day again tomorrow and for the rest of the week really.
Love Yall,
~Poppet
Sunday, August 10, 2014
I have woke up the past couple of mornings, with my lungs bothering me, but not enough to be concerning, and my peakflows are decent. Its annoying more then anything. I know some nights I need it to sleep because they get the best of me but I am ok.
I wanted to take a minute to talk about a few people. Recent appointments had left me crushed but within a few texts, and a visit with someone, it made think of a few things.
~ I am not alone. Somedays I feel like I have no one to lean but that is far from the truth. I a group of warrior that has stood by no matter what. Bad news, good news, tears, happiness, they don't care they are THERE. For me. By my side. When I need a shoulder they are there.
~ When everything seems dark. It is not. There could be a light at the end of the tunnel. If worse case scenerio is true, and I am giving the greatest blessing, I can do so much I can no longer do.
~Life continues to go on. I can face it like I always do and fight with every thing in me and win. There is no reason to let go. Re-think things. This is the time to be on my knees in prayers and let God work miracles like he always does.
I am strong enough to beat this. And I am going to beat this. I also have Wonder Woman. That reminds me that I have this. She has learned things I never even knew I taught her. She knows the proper way to pick vegetables, she knows the proper way to put together one of my outfits (think cut up and tied together shirts and skull bandanas) she has picked my tattoo's WITH me, and she can pair makeup. What more could a girl ask for. She knows the importance of us having matching things, and supports all of my crazy decisions. She encourages me to realize my dreams can come true. Even when I tell her Ms T's and I's business plan.
I got this!! WE got this, me and my warriors as I call them. Most of yall are nurses, the others are friends I gathered along the way or never left my side. Yall have looked past every ounce of my disease and never held it against me. I do believe we can fight this together and win the war. I can not do this with out yall and I am so thankful for the uplifting support I have thru phone calls, video chats, texts, messangers, FB, you name it.
I must hop off here though, busy week ahead of me, but I'll keep yall updated.
Love
~Poppet
I wanted to take a minute to talk about a few people. Recent appointments had left me crushed but within a few texts, and a visit with someone, it made think of a few things.
~ I am not alone. Somedays I feel like I have no one to lean but that is far from the truth. I a group of warrior that has stood by no matter what. Bad news, good news, tears, happiness, they don't care they are THERE. For me. By my side. When I need a shoulder they are there.
~ When everything seems dark. It is not. There could be a light at the end of the tunnel. If worse case scenerio is true, and I am giving the greatest blessing, I can do so much I can no longer do.
~Life continues to go on. I can face it like I always do and fight with every thing in me and win. There is no reason to let go. Re-think things. This is the time to be on my knees in prayers and let God work miracles like he always does.
I am strong enough to beat this. And I am going to beat this. I also have Wonder Woman. That reminds me that I have this. She has learned things I never even knew I taught her. She knows the proper way to pick vegetables, she knows the proper way to put together one of my outfits (think cut up and tied together shirts and skull bandanas) she has picked my tattoo's WITH me, and she can pair makeup. What more could a girl ask for. She knows the importance of us having matching things, and supports all of my crazy decisions. She encourages me to realize my dreams can come true. Even when I tell her Ms T's and I's business plan.
I got this!! WE got this, me and my warriors as I call them. Most of yall are nurses, the others are friends I gathered along the way or never left my side. Yall have looked past every ounce of my disease and never held it against me. I do believe we can fight this together and win the war. I can not do this with out yall and I am so thankful for the uplifting support I have thru phone calls, video chats, texts, messangers, FB, you name it.
I must hop off here though, busy week ahead of me, but I'll keep yall updated.
Love
~Poppet
Thursday, August 7, 2014
The Good with the Bad
My concerns of my lungs getting worse is probably not far off. I saw Superman today, and I told him if I do not use my mucomist, my lungs feel stiff, and thats with clearing my lungs. He kinda looked at me and asked he can do a Pulmonary Function test to see if I have progressive lung damage. The medical people know this is BAD or well could be. I have hope. Hope that even in worse case scenerio, that I will get what I need. I have faith that I will be brought thru this. Have faith that every last thing will be OK. Grandpa use to tell me its not the battle that counts, its the war. You can lose a battle here and there but never stop fighting until the war is over. You know what he is RIGHT. I will grab my fairy wand and it with every once attitude I have in me. I will never let this disease consume.
To move on to my POTS. Well I am stable and we are gonna persue Vanderbelt research. Which all research points to saline therapy. Which well, its running right now as we speak. But with POTS, I have disease that makes me allergic to life itself. I am not even joking. I am OK with this, I am use to being a Vegan. But they now want to make it an "offical" diagnosis. And you know what that means?? Bonemarrow testing. My heart just sank when I saw this. BUT if they can give me proper treatment, outside of benadryl/pepcid, I am so lets go for it. I have come this far might as well jump feet first into this and face it head on. I GOT THIS.
Of course I heart this and sent out a few text messages. And I got some support that I know is always there. And Wonder Woman will never let me do this alone. Though at times I feel guilty I have put her thru so much, though she makes the choice to stand by me. Others looked up exactly what is going on. But lets face it, what super hero hasn't gone thru hell to come out who they are?? I am not saying I am super hero, I am rock the pixie wings. But sometimes we need fiesty, and stubborn attitudes to know we can get thru this. With lots of prayers. It has worked before. I will never forget the RT that spent the entire night in and out of my room. finding every device he could to open my airways and get me out of respiratory distress. Or the nurse that held my hand thru Vtach, waiting for the needed help, the RT that held my hand and cried with me thru an MRT while I was alert and not breathing. All who I have never seen again but played an active part in saving my life and who are God's angels. Yes the tattooed girl is a Christian. Yes God does send angels in human for to help us along the way.
BUT I am pretty sure there are potatoes in my kitchen wanted to be cooked. I am also sure that they need "cheese" sauce to. So I am gonna go do what I do best.
Love Yall
~Poppet
To move on to my POTS. Well I am stable and we are gonna persue Vanderbelt research. Which all research points to saline therapy. Which well, its running right now as we speak. But with POTS, I have disease that makes me allergic to life itself. I am not even joking. I am OK with this, I am use to being a Vegan. But they now want to make it an "offical" diagnosis. And you know what that means?? Bonemarrow testing. My heart just sank when I saw this. BUT if they can give me proper treatment, outside of benadryl/pepcid, I am so lets go for it. I have come this far might as well jump feet first into this and face it head on. I GOT THIS.
Of course I heart this and sent out a few text messages. And I got some support that I know is always there. And Wonder Woman will never let me do this alone. Though at times I feel guilty I have put her thru so much, though she makes the choice to stand by me. Others looked up exactly what is going on. But lets face it, what super hero hasn't gone thru hell to come out who they are?? I am not saying I am super hero, I am rock the pixie wings. But sometimes we need fiesty, and stubborn attitudes to know we can get thru this. With lots of prayers. It has worked before. I will never forget the RT that spent the entire night in and out of my room. finding every device he could to open my airways and get me out of respiratory distress. Or the nurse that held my hand thru Vtach, waiting for the needed help, the RT that held my hand and cried with me thru an MRT while I was alert and not breathing. All who I have never seen again but played an active part in saving my life and who are God's angels. Yes the tattooed girl is a Christian. Yes God does send angels in human for to help us along the way.
BUT I am pretty sure there are potatoes in my kitchen wanted to be cooked. I am also sure that they need "cheese" sauce to. So I am gonna go do what I do best.
Love Yall
~Poppet
Monday, August 4, 2014
Weekend
Some days likes this week alone, and this over all summer, I feel like my health (my lungs) are getting worse. I spent just about the entire weekend on oxygen (it rained) and then last night I had a reaction to a melon, and then today was a bit rough.
I guess we will start at this weekend. My lungs were a mess. On and off my oxygen all weekend. I got up "where;s your oxygen" IM FINE lol (yeah she knows me better then that) a walk to my room later. OXYGEN. This was thru out the weekend. I was just so freaking short of breath. I went to bed one night with it on 3. And that will tell you how bad off I was. I couldn't seem to shake it off. Sunday i felt "ok" so we went to the farm to get some veggies and fruit. I stayed off of it most of the day and then...
... I cut up a fruit I've never eaten before. I see the one's that know me in person sighing or screaming at their computer. In my defense. Its a MELON and I eat them all the time, its the guarantee way to get me down the hall way to snoop thru groceries. I took one SMALL bite to try it and it was HEAVEN, I go to work on my salad. My arm is burning, it has hives, I can't catch my breath, feeling dizzy. Wonder Woman, um I have an issue do you see my arm. As calmly as we always are BENADRYL. She's grabbing my oxygen, I come back to the kitchen and of course "Steroids??" "yep" "how much??" "20" "good." I am not gonna even pretend its not a routine thing. So I am cutting my salad, "it's spreading!! I can't eat if its spreading" I go take more benadryl. Now I am high as kite trying to eat my salad. Wasn't long before I was dead to the world right??
Brings me to today, I woke up on oxygen AGAIN. (do you see the trend here) Well I went to the Uni (Dr. Dean if your reading this I miss you!! I keep going to school and not see you). After an argument about stairs lol (she won I am on crutches) we took the elevator. BACK TRACK we were at the student center lol. SO out of breath. Go back to school and I am ok. Walking into target and it smell like it is on fire, and it gave me such a horrid attack. I thought I was ok. but in Walmart I was huffing and puffing on oxygen, and I NEVER have that issue. At times it does make me nervous. But granted the weekend I have had it's not so shocking to here I can't breathe.
At least I was good for my tattoo right??
Well Chef is on TV and we all know I love me a scottish chef.
Love Yall
~Poppet
I guess we will start at this weekend. My lungs were a mess. On and off my oxygen all weekend. I got up "where;s your oxygen" IM FINE lol (yeah she knows me better then that) a walk to my room later. OXYGEN. This was thru out the weekend. I was just so freaking short of breath. I went to bed one night with it on 3. And that will tell you how bad off I was. I couldn't seem to shake it off. Sunday i felt "ok" so we went to the farm to get some veggies and fruit. I stayed off of it most of the day and then...
... I cut up a fruit I've never eaten before. I see the one's that know me in person sighing or screaming at their computer. In my defense. Its a MELON and I eat them all the time, its the guarantee way to get me down the hall way to snoop thru groceries. I took one SMALL bite to try it and it was HEAVEN, I go to work on my salad. My arm is burning, it has hives, I can't catch my breath, feeling dizzy. Wonder Woman, um I have an issue do you see my arm. As calmly as we always are BENADRYL. She's grabbing my oxygen, I come back to the kitchen and of course "Steroids??" "yep" "how much??" "20" "good." I am not gonna even pretend its not a routine thing. So I am cutting my salad, "it's spreading!! I can't eat if its spreading" I go take more benadryl. Now I am high as kite trying to eat my salad. Wasn't long before I was dead to the world right??
Brings me to today, I woke up on oxygen AGAIN. (do you see the trend here) Well I went to the Uni (Dr. Dean if your reading this I miss you!! I keep going to school and not see you). After an argument about stairs lol (she won I am on crutches) we took the elevator. BACK TRACK we were at the student center lol. SO out of breath. Go back to school and I am ok. Walking into target and it smell like it is on fire, and it gave me such a horrid attack. I thought I was ok. but in Walmart I was huffing and puffing on oxygen, and I NEVER have that issue. At times it does make me nervous. But granted the weekend I have had it's not so shocking to here I can't breathe.
At least I was good for my tattoo right??
Well Chef is on TV and we all know I love me a scottish chef.
Love Yall
~Poppet
Friday, August 1, 2014
I recently got a tattoo, Alice themed, cheshire with a clock and a rose. Representing my one disease and how precious time is. Lets face it. Time is not guaranteed for anyone, but for those of us fighting a chronic illness like mine its very much so on your mind constantly. Most of us embrace it and make every day count. So I got to thinking of my next tattoo. Yes I am THAT person. lol I have been thinking of getting a ship for a long time now. I wanted to get it down my side but rib tattoo's will collapse my already weak lungs. So I want it down my leg.
Almost like a ghost ship. I was like Wonder Woman, what is the meaning behind it. Well "ghost pirates" are between worlds they are not really living but they are not really dead. It made both of us think. When you are faced with the type of lung disease I have, sometimes you feel like you are caught between the living or the dead. Before you get confused by this let me explain. I am chronically ill (obviously) and some days i am trapped on oxygen, IVs, in bed and longing to be apart of the world most people are in. You want to go shopping?? You can go. Movies?? Have fun!! But I am nowhere near sick enough for potentially life saving treatment. I am still functional on most days, others well not so much. So how am I any different from them?? They seem so full of life?? But are they really?? You never know what some one is going thru. You can not tell how sick I am most days. But like them I fight for the life I desire. The life I want to live and act as if I do live.
But for a more real update, my ankle is still healing and have not been able to exercise at all. I've been exhausted and battling my lungs and my heart. But I am winning!! I will always win!!
But for now I must be off
Love Yall
~Poppet
Almost like a ghost ship. I was like Wonder Woman, what is the meaning behind it. Well "ghost pirates" are between worlds they are not really living but they are not really dead. It made both of us think. When you are faced with the type of lung disease I have, sometimes you feel like you are caught between the living or the dead. Before you get confused by this let me explain. I am chronically ill (obviously) and some days i am trapped on oxygen, IVs, in bed and longing to be apart of the world most people are in. You want to go shopping?? You can go. Movies?? Have fun!! But I am nowhere near sick enough for potentially life saving treatment. I am still functional on most days, others well not so much. So how am I any different from them?? They seem so full of life?? But are they really?? You never know what some one is going thru. You can not tell how sick I am most days. But like them I fight for the life I desire. The life I want to live and act as if I do live.
But for a more real update, my ankle is still healing and have not been able to exercise at all. I've been exhausted and battling my lungs and my heart. But I am winning!! I will always win!!
But for now I must be off
Love Yall
~Poppet
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