I got a text today that my friend that was gonna come see me, has pneumonia and bronchitis. Yeah as much as I lover her, I am so glad I didn't catch any of that. I can't afford to get pneumonia at all. My body can barely handle bronchitis somedays and its so easy for me get infections. Feel better girlie!!
In happier news, I felt good enough to experiment in the kitchen today, which was quite interesting. I can't eat meat (my health), and allergic to everything else, so I made Vegan burgers. The baked one's were good, the fried ones didn't stayed formed. I really need to get a food processor. The flavor was good though, I was also happy that I am finally feeling well enough to get up and in the kitchen and do what I love.
Random, but The Nanny theme just came on and now I miss my favorite RT that use to come and sit in my room on her break, and has spent so many hours taking care of me!! I miss her terribly.
Anyways, when I am OK, I try to spend a decent amount of time trying to make things I can no longer eat, most being to allergies, other part I don't want to take enzymes and want to see how I can stay healthy and comfortable with proper diet. So far I have found out I can tolerate olive oil, avocado, and peanut butter in small portions with out being in to much pain. I eat a lot of tofu and chickpeas. I also make vegan and gluten free sweets (allergies) I love me some sweets, so I decided to figure out recipes that work so I can still eat regular food and stay safe. So far I have brownies and cookies down. Cinnamon buns as long as you don't reheat them. I figured I am a Chef, I might as well use my knowledge and figure out safe and GOOD food. I also get most of my vegetables at the farm so I avoid most chemicals and GMOs. And its so fun taking the All father there, because he walks around with whicker baskets. He asked me to put skulls on them which I did, they just happen to be bows. Sorry All Father :-).
I want to make sugar cookies with icing this week, I just don't know if I am gonna have the energy to with everything going on, and I need to find a recipe to alter as well. I know how to make icing but I have not made sugar cookies in forever. But I guess I should hop off of here, I haven't been sleeping well with all these meds.
Love Yall
~Poppet
Monday, September 8, 2014
Sunday, September 7, 2014
Though I am doing better, my friend is still sick. So we still have not hung out, but they're right there will be other days. There are other trips to come. Still upset about it, however we both need to keep me out of the hospital, I am trying so hard to stay healthy, and sometimes life sacrifices or well social sacrifices are what we have to do.
I need to stay healthy to stay off transplant list, and I need to continue to teach all my students what its like to be me. Its not easy being a chronic patients, especially with diseases not everyone understands. I also had quite a few nurses make not so good mistakes on me and had very bad side effects. Very few nurses work with lines all the time, let alone see them often out side of the ICU and its easier on me and others when they know how to use lines. I also have to see Cardio this week to, I NEED to be at this appointment. There has been much specualutation about my test. Superman let me see the report that was sent to him, and it was 100% different then what my nurse had told me. When I requested to see my doctor, well I was told I had no right to see him to discuss my heart. ALSO, the nurse never told me I need to do cultures to rule out a heart infection, I had found out thru Superman going um you were suppose to do this. Im like what?? The good news is, cultures came back negative 6 months ago. BUT that does not mean I had official answers. It gets frustrating dealing with people sometimes but I have learned just to go, whatever I'll tell the doctor when I see him.
As for my infection?? Well my PT is back down to normal, and I have been off oxygen during the day, but need it to sleep. Half the time during the day I am in my chair playing farmville, and not open and around. Though I did take it off today and was like, I am not sure this will be off long for sure. But I am so how made it, trying to stay off it tonight, though at the same time I do want to get better. I also want to be off the antibiotics for a bit and not get right back on them. I don't want a repeat of last year at all. Though I am off steroids again!! Was up all night last night because of them, then Rubes decided to come in here and pounce on shadows. She was being so sweet, then she started pouncing everything, my bed, my head, the wall... lol Between the 2 of those I had no sleep.
I guess I had best get off here and take meds though
Love Yall
~Poppet
I need to stay healthy to stay off transplant list, and I need to continue to teach all my students what its like to be me. Its not easy being a chronic patients, especially with diseases not everyone understands. I also had quite a few nurses make not so good mistakes on me and had very bad side effects. Very few nurses work with lines all the time, let alone see them often out side of the ICU and its easier on me and others when they know how to use lines. I also have to see Cardio this week to, I NEED to be at this appointment. There has been much specualutation about my test. Superman let me see the report that was sent to him, and it was 100% different then what my nurse had told me. When I requested to see my doctor, well I was told I had no right to see him to discuss my heart. ALSO, the nurse never told me I need to do cultures to rule out a heart infection, I had found out thru Superman going um you were suppose to do this. Im like what?? The good news is, cultures came back negative 6 months ago. BUT that does not mean I had official answers. It gets frustrating dealing with people sometimes but I have learned just to go, whatever I'll tell the doctor when I see him.
As for my infection?? Well my PT is back down to normal, and I have been off oxygen during the day, but need it to sleep. Half the time during the day I am in my chair playing farmville, and not open and around. Though I did take it off today and was like, I am not sure this will be off long for sure. But I am so how made it, trying to stay off it tonight, though at the same time I do want to get better. I also want to be off the antibiotics for a bit and not get right back on them. I don't want a repeat of last year at all. Though I am off steroids again!! Was up all night last night because of them, then Rubes decided to come in here and pounce on shadows. She was being so sweet, then she started pouncing everything, my bed, my head, the wall... lol Between the 2 of those I had no sleep.
I guess I had best get off here and take meds though
Love Yall
~Poppet
Saturday, September 6, 2014
I think I mentioned last blog I was sick again, and I had been bugging a good friends of my to come up and see me, and my sweet nephew. Well, she gets sick, and of course I am on steroids and antibiotics, just got off oxygen (except at night Nurses orders) so we had to say now, we were both heart broken. But we both get the fact I can't end up in the hospital. Which gets frustrating. Sometimes I feel I need to post a not on the front door that says "quarantine stay far away." Yes that is an over exaggeration but lets face it, I can not get sick. Which I mean it happens more often then it should. But it makes you learn how different your life style is from others.
At least we are pass the stage (for the most part) that I need to wear a mask when I go outside, I still cover my face but we up graded or down graded to scarves. My favorite happens to be a brown scarf with skulls and roses on it. But I constantly feel bad that stuff like this happens. I have to be so careful not only around my friends but in public. I was shopping with Wonder Woman, she needed shoes, and of course she walks me right thru the perfume. By accident. And she tells me to hurry up and move!! lol When we go outside we have to look for people smoking, people that have to much perfume on, and we learned never ever go shopping around Prom!! It is a nightmare. My life has constantly been altered to this disease, but you know?? That is ok. I rather have an altered functional life. I also have an excuse to own way to many scarves.
In other news, I am doing much better, I am still not hungry, or well tolerating food so I get to be creative and make soups. Most of them are soy based but they are actually really good. I also have been drinking way to much sweet tea. It also gives me a reason to expand my culinary horizons and experiment with different ways to make soup. Which I am OK with, i love experimenting in the kitchen. Yesterday I made a cheese soup, with snap peas and salsa. Weird?? Probably but it tasted really good. I need to get off here though and make some soup and post a more interesting blog later.
Love Yall
~Poppet
At least we are pass the stage (for the most part) that I need to wear a mask when I go outside, I still cover my face but we up graded or down graded to scarves. My favorite happens to be a brown scarf with skulls and roses on it. But I constantly feel bad that stuff like this happens. I have to be so careful not only around my friends but in public. I was shopping with Wonder Woman, she needed shoes, and of course she walks me right thru the perfume. By accident. And she tells me to hurry up and move!! lol When we go outside we have to look for people smoking, people that have to much perfume on, and we learned never ever go shopping around Prom!! It is a nightmare. My life has constantly been altered to this disease, but you know?? That is ok. I rather have an altered functional life. I also have an excuse to own way to many scarves.
In other news, I am doing much better, I am still not hungry, or well tolerating food so I get to be creative and make soups. Most of them are soy based but they are actually really good. I also have been drinking way to much sweet tea. It also gives me a reason to expand my culinary horizons and experiment with different ways to make soup. Which I am OK with, i love experimenting in the kitchen. Yesterday I made a cheese soup, with snap peas and salsa. Weird?? Probably but it tasted really good. I need to get off here though and make some soup and post a more interesting blog later.
Love Yall
~Poppet
Thursday, September 4, 2014
Never Give Up
I accidently got another infection, I like to blame Mother Nature, we had a beautiful almost chilly week then it sky rocketed to the 90s. Next thing I know, I am calling people going "i need meds." I am not hungry, I have a mild fever, but today I am not huffing and puffing on oxygen. I also told Superman to go for with some pretty invasive testing. Which I am terrified to do this. I have only told one person my true fears of all this. Though I am terrified I will absolutely never give up.
Our there days where I want to break down?? Cry?? Give up?? I wouldn't be human if I told you that I didn't. There are times I get so frusterated with this life, that I want to break down. Then I grab Rubes, my phone, send a couple text, squeeze Rubes until I get clawed, and remember all the reasons I fight so hard. There's nothing more wonderful in life then friends and family who love you beyond measure. Kittens that curl up next to you, old dogs jumping on the fence to love you even though they can barely jump anymore, texts from friends to let me know they care. This is only part of the reason though.
Many have lost their battle to their disease. They are falling warriors. We fight in ways no one understands, or, are capable of understanding. Example?? Wonder Woman told me, I use to tell my patients I understood what they were going thru, though I though I did, I never knew until now what they really go through. That should be in quotes. And it broke my heart. But she is right, though I wish she had never ever been able to feel that type of pain, she has and she takes it in waves. She has learned to comfort her patients in ways other nurses do not know how to. She can share her grief with family. As heart breaken as that is, that is an describe comfort to the family. Though most people are shocked to find out how sick I truly am. But the pride in her face and when she see's me doing something I have not done in years?? Is just so amazing. The joy in her face, the light in her eyes. *Classic proud parent look goes here"
The falling?? The ones that lost?? I have the opportunity bring awareness out to future nurses, the public, friends. I also can go thru with research. I can go thru testing to find out what really is going on, and try new medicine, so the next generation does not have to go thru this. I was blessed to have a doctor take the risk and give me Saline, at home for treatment. Two years later its now found to be the most common treatment for POTS. My CF?? I take Mucomist a drug that is not commonly giving. And soon maybe even and MCAD treatment. Asthma?? I got try a really cool injection that helped me get thru the worse part of my asthma. It helped fix part of my MCAD, its not a common treatment. This is what we do, we fight to get our lives back, or we fight so the next generation does not go through what we have gone thru or do go thru.
Though I like to consider myself "an average girl" I like makeup, doing my hair, wearing odd and off beat clothes, and spend way to much time on pinterest feeling insecure. I am obsessed with Alice, Fairies and Skulls. But people constantly point out that I am not so average. i am OK with that. Sorta. Some days I see myself as a fighter, others I see myself as burden and feel awful for what I have put my family thru. When thats not the case at all. They chose to be in my life and love for who I am, what I am, and the crazy things that come out of my mouth.
But the thing is, the point of all this is. NEVER, EVER, GIVE UP. Wake up, smile, and tell the world "I got this." Do your hair, paint your nails, or do whatever that makes you feel a little more you. Do what you love to do in spite of what hand you were dealt. The All Father has told me for years. Just because you have a bad hand of poker, doesn't mean thats what you let other see, you gotta let them think you have a good hand and live it. Never let your illness take control. You are not your disease, your are a beautiful amazing person, that has been giving a gift, find it, love it, use it.
I guess I need to get off here though and take Meds, I got nurses to teach next week and need to get better ASAP.
Love Yall
~Poppet
Our there days where I want to break down?? Cry?? Give up?? I wouldn't be human if I told you that I didn't. There are times I get so frusterated with this life, that I want to break down. Then I grab Rubes, my phone, send a couple text, squeeze Rubes until I get clawed, and remember all the reasons I fight so hard. There's nothing more wonderful in life then friends and family who love you beyond measure. Kittens that curl up next to you, old dogs jumping on the fence to love you even though they can barely jump anymore, texts from friends to let me know they care. This is only part of the reason though.
Many have lost their battle to their disease. They are falling warriors. We fight in ways no one understands, or, are capable of understanding. Example?? Wonder Woman told me, I use to tell my patients I understood what they were going thru, though I though I did, I never knew until now what they really go through. That should be in quotes. And it broke my heart. But she is right, though I wish she had never ever been able to feel that type of pain, she has and she takes it in waves. She has learned to comfort her patients in ways other nurses do not know how to. She can share her grief with family. As heart breaken as that is, that is an describe comfort to the family. Though most people are shocked to find out how sick I truly am. But the pride in her face and when she see's me doing something I have not done in years?? Is just so amazing. The joy in her face, the light in her eyes. *Classic proud parent look goes here"
The falling?? The ones that lost?? I have the opportunity bring awareness out to future nurses, the public, friends. I also can go thru with research. I can go thru testing to find out what really is going on, and try new medicine, so the next generation does not have to go thru this. I was blessed to have a doctor take the risk and give me Saline, at home for treatment. Two years later its now found to be the most common treatment for POTS. My CF?? I take Mucomist a drug that is not commonly giving. And soon maybe even and MCAD treatment. Asthma?? I got try a really cool injection that helped me get thru the worse part of my asthma. It helped fix part of my MCAD, its not a common treatment. This is what we do, we fight to get our lives back, or we fight so the next generation does not go through what we have gone thru or do go thru.
Though I like to consider myself "an average girl" I like makeup, doing my hair, wearing odd and off beat clothes, and spend way to much time on pinterest feeling insecure. I am obsessed with Alice, Fairies and Skulls. But people constantly point out that I am not so average. i am OK with that. Sorta. Some days I see myself as a fighter, others I see myself as burden and feel awful for what I have put my family thru. When thats not the case at all. They chose to be in my life and love for who I am, what I am, and the crazy things that come out of my mouth.
But the thing is, the point of all this is. NEVER, EVER, GIVE UP. Wake up, smile, and tell the world "I got this." Do your hair, paint your nails, or do whatever that makes you feel a little more you. Do what you love to do in spite of what hand you were dealt. The All Father has told me for years. Just because you have a bad hand of poker, doesn't mean thats what you let other see, you gotta let them think you have a good hand and live it. Never let your illness take control. You are not your disease, your are a beautiful amazing person, that has been giving a gift, find it, love it, use it.
I guess I need to get off here though and take Meds, I got nurses to teach next week and need to get better ASAP.
Love Yall
~Poppet
Tuesday, September 2, 2014
Were not alone
Sorry I have not updated lately, this past weekend was rough!! I'd stand up and feel like I would pass out and my heart rate would sky rocket and I'd lose my breath and then tell Wonder Woman yeah not moving for a second. I found out friday night when my neighbor knocked on my door. I haven't had an episode like that in YEARS. Lasted the weekend. Then I was on pinterest, and I found thru Dysautonomia Internationl that putting your hands above your had CAN trigger you. Well guess what I had been doing?? Arm work outs and lifted my arms over head 36 times. Because I found another website how to exercise with PICC lines and that was of the moves. Why Superman always tells me to STAY OFF THE INTERNET when it coms to my disease. I see my friends reading this and going really?! And then going yep thats my girl!! lol I started feeling better then I reacted to the air and was way to much benadryl. Then took a prednisone with a shot of benadryl while my nurse (read Wonder Woman) just looked at me like "Really" I was doing a treatment still not doing well and NEEDED more and getting up for water was asking to much. But the good news is, it never progressed and I am ok. Which leads me to my next story.
I needed my oxygen when I was out today, bad lungs last night with the heat of today... When I was out I had stopped by starbucks like I alway do. And the girls that were there yesterday (yes I am there that often) saw me with my oxygen and made sure I was OK. They were actually concerned why I had oxygen and what was wrong. I explained last night, my lungs, and explained I just needed it to function today though most days I do not. Its nice to see there are people out there that truly care about me. Even if they do not really know me. I am sure most are like its there job to be nice to me. And know it really is not. I have walked into places and people refuse to work with me because I have oxygen on or I have a PICC line. I have people treat me as though I have the plague because I need oxygen or IVs to survive. I mean really?? I need a LOT more then that to survive its just not that visible. Sif has seen it more often then not, I am oblivious to it now a days. She's not so much anymore. I've had people stop talking to me cause of all this before. STOP TALKING TO ME. So when a stranger shows concern about my health its just beyond amazing to me.
It makes me realize that I am not alone in all this. Some days I feel like I go through this alone, and those around me do not even so much as comprehend what I go through, that no one can possibly go thru this "with me" because they do not live with the symptoms that I go thru. But that is the most inaccurate thing about all this. They have to watch me go through all of this. They see me one day and I am ok and the next I am not. Or they see me be OK one minute and barely functioning the next minute. They have seen me fight for my life in ways most never even think about. Struggle daily to common daily things. They have seen my in the hospital struggling to just walk across the room, when they knew the girl that worked and went to school all of these years. Its just as hard on them as it is for us who are chronically ill. There are people that don't "get it." They haven't been there with us when we think its a huge accomplishment to walk with an IV and oxygen, to seeing us walk the mall with just a small tank of oxygen and not collapse after words. The ones that here your sick and make you laugh because they know you are hurting. Call you for hours just to make you smile, or FT you to play with the puppy in a first person gamer type way. That is going thru it with you. They see what you go thru, they feel your emotional pain and want to move mountains to make it better for you. That is when you know you are not alone in all this. You have people by your side fighting with you to get better.
But I must get off here, I for see fresh Teal hair in my future...
Love Y'all
Poppet~
I needed my oxygen when I was out today, bad lungs last night with the heat of today... When I was out I had stopped by starbucks like I alway do. And the girls that were there yesterday (yes I am there that often) saw me with my oxygen and made sure I was OK. They were actually concerned why I had oxygen and what was wrong. I explained last night, my lungs, and explained I just needed it to function today though most days I do not. Its nice to see there are people out there that truly care about me. Even if they do not really know me. I am sure most are like its there job to be nice to me. And know it really is not. I have walked into places and people refuse to work with me because I have oxygen on or I have a PICC line. I have people treat me as though I have the plague because I need oxygen or IVs to survive. I mean really?? I need a LOT more then that to survive its just not that visible. Sif has seen it more often then not, I am oblivious to it now a days. She's not so much anymore. I've had people stop talking to me cause of all this before. STOP TALKING TO ME. So when a stranger shows concern about my health its just beyond amazing to me.
It makes me realize that I am not alone in all this. Some days I feel like I go through this alone, and those around me do not even so much as comprehend what I go through, that no one can possibly go thru this "with me" because they do not live with the symptoms that I go thru. But that is the most inaccurate thing about all this. They have to watch me go through all of this. They see me one day and I am ok and the next I am not. Or they see me be OK one minute and barely functioning the next minute. They have seen me fight for my life in ways most never even think about. Struggle daily to common daily things. They have seen my in the hospital struggling to just walk across the room, when they knew the girl that worked and went to school all of these years. Its just as hard on them as it is for us who are chronically ill. There are people that don't "get it." They haven't been there with us when we think its a huge accomplishment to walk with an IV and oxygen, to seeing us walk the mall with just a small tank of oxygen and not collapse after words. The ones that here your sick and make you laugh because they know you are hurting. Call you for hours just to make you smile, or FT you to play with the puppy in a first person gamer type way. That is going thru it with you. They see what you go thru, they feel your emotional pain and want to move mountains to make it better for you. That is when you know you are not alone in all this. You have people by your side fighting with you to get better.
But I must get off here, I for see fresh Teal hair in my future...
Love Y'all
Poppet~
Wednesday, August 27, 2014
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
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
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 .
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