I often wander how Wonder Woman puts up with me. Yesterday I got lost in a bad part of town and expected her to know where I was with out street signs available as I freaked out for her to help yet I couldn't find street signs, finally found some and she finallly got me home. lol Apparently going around the block was a terrible idea. And the GPS was at home and my tank was almost empty.
Today she I had to deal with a not so nice person who made my hysterical. I am talking i can't catch my breath, chest hurts crying. Which is terrible for CF and POTS. I am still having issues with my breathing from this but I am ok. She had to calm me down so I could enough medication in me to help me breathe.
On top of this she is my nurse and is always the first person I call. She's always at my bed side, always at her phone, and always there to make sure everything is right. I often feel I need to protect from this life but there is no protecting the people that are close to you. You can't shield someone from the reality of your life especially those that care and can see right thru you. Now I have a few people that are that close to me but they usually get me after she gets the blunt end of me. Most times I don't mean to lash out but dealing with these diseases can be emotionally taxing. It gets quite difficult and when you are dealing with companies that won't help you or tell you what you need to do or tell you where to find policies at. She tends to get a lot of stress from me. Which totally isn't fair but I try to keep my emotions in check as much as I possibly can. But days like today that doesn't happen.
My life is not terrible it's just the opposite I just deal with health that likes to decrease here and there. I also have to get things strait just in case something happens and when the 2 collide together it gets over whelming. When you are chronically ill you deal with much more then just your health. You deal with so much more then your lungs and heart not working. Your systems slowly failing. Your IVs needing replaced. Taking medications on time. You also deal with loss.
Loss of what you use to be able to do, loss of friends that you use to have faith. Jobs. Freedom. The ability to do normal life things. You get harshly accused of things that aren't real. I often get accused of being anorexic or hormone imbalances when it's just I can't absorb most of what I eat. I get called anti social because it gets difficult to go out. You learn strangers are much more compassionate times then your own friends you've known for years that walked out on you. You find best friends become family and you find that new friends that find their way into your life can be much better then friends you use to have.
You find that people truly want to know your ok and you find people just being nosey and demanding. You get abuse in stores because you do not look sick because you spent hours finding the right blush to cover the sleepless nights and you find the right shade of lipstick to hide your purple tinged lips. You find a bit to big of shirt can hide your unintental weight loss. Some people will attack this and think your taking advantage of people and others will stop and hear your story. Wonder Woman assures me its there loss when they judge me and don't get to know me like I am some great person I don't see it.
Some see me as an inspiration which at times I find over whelming but other days I find my strength in that comment. You see I am just an average girl trying to make it this harsh world but also such a beautiful world that people do not stop and see.
Wonder Woman has seen every side of this. The girl that had no idea what to do in the face of a seemingly hopeless diagnosis and somehow found the strength to fight the odds. She has seen the tears, the pain, and the struggle. But she also see's me cry it out and pick it up and put myself out there to get awareness out. Sorry this is so long I guess I just needed to voice my frustrations to myself.
If you read this far. I right this to let people know they are not alone. We get a God awful diagnosis and feel there is no hope. We have days where we think this is the worse thing ever. I promise though it does get better and we have strength in those around us we just have to let them in. Alice said it herself though "I give myself very good advice I very seldom follow it." I guess I need to be more open with people.
Im off here though treatment is calling since I set myself back a bit with sobbing.
Love Y'all
Poppet
Friday, May 15, 2015
Monday, May 11, 2015
Update!!
I swear lately I have either been sick or busy. I am not sure I have felt anything over then "go go go" or "my lungs hate me."
I guess we will start with Thursday?? I went shopping with Wonder Woman because I need a sweater to go with my dress for Nursing Pinning. Not only did I have a tank top dress, I had a PICC to hide (protect). I walked from one end of the mall to another, with oxygen, and I had to sit down. Which is unheard with me on oxygen, it usually gives me the support I need to get thru. Unless I have a major infection it usually does its job. Not that day. Wonder Woman was only slightly concerned but we both just wrote it off as well I do have crappy lungs and it wasn't anything serious. Which I mean it really is not. I do not think.
Friday i just spent the day washing my hair and laying everything out for Saturday because early morning and picking out makeup is not something I like to do. Don't get me wrong I love makeup and won't leave the house with out it. Because it's one way I calm down and one way I can express myself with out the concern of "am i triggering something."
Which brings us to Saturday!! Nursing pinning. I was still struggling a bit but it wasn't serious. I had gone part of the morning with out my oxygen. I was just sitting at a desk while Wonder Woman does what Wonder Woman does and that save the day, whether its for me or someone else its what she does. So I make it over to the hall where pinning starts, and while I was waiting for one of my "favorites." I was hanging out with another friend I trust who also is a nurse, and was selling t-shirts with someone I never met and someone I didn't like. Which I know how to not like people and still be kind to them. Its the way it should be. I asked the one I didn't if she was a "beach" employee and she said yes, you were suppose to teach for me but something happened. I immediately new who she was and remembered what happened that month. Which isn't something I care to remember. Which I told directly and respectfully. That "something" was a major lung infection I was suppose to be admitted for, but couldn't be cause a family member had half her tongue removed and it was my responsibility to care for her. While getting up a 2 am for treatment, 5 am for manual chest PT, to get up at 7 to do more treatment and care for my family member. While Wonder Woman maintained work and help me to keep me alive. I was on antibiotics for a month strait!!! She never replied back. My favorite came and saved me!! lol Turns out she's a peds nurse and didn't grasp how deadly that could have been?? No really I know
So I sat down and someone asked me who I was since they never seen me and if I worked at the Beach campus, I said no I was Wonder Woman's daughter and I teach on some occasions as a guest on what life being sick is like. I always hide out in her office to make myself scarce when I need to. She asked about my oxygen, I explained my health, and she just looked at me and goes your lucky to be alive. No, really I am, I just wished she knows how true that statement really is. She maid a point to keep an eye on me to, knowing what all this meant. She also got to see me short of breath on oxygen as well. I also got to see some of the people I have grown to love over the years. Who I also found out was a Peds nurse.
But it made realize this: There are 2 types of people in the world. One's that truly care and one's who think they are entitled. Sorry y'all, you are NOT entitled to me speaking, I do because it is what I love to do.
Then I spent all day yesterday sick and on oxygen and medication. Lots and lots of meds. I was so tired and so sick.
I guess that bring us up to date haha
Love Y'all
~Poppet
I guess we will start with Thursday?? I went shopping with Wonder Woman because I need a sweater to go with my dress for Nursing Pinning. Not only did I have a tank top dress, I had a PICC to hide (protect). I walked from one end of the mall to another, with oxygen, and I had to sit down. Which is unheard with me on oxygen, it usually gives me the support I need to get thru. Unless I have a major infection it usually does its job. Not that day. Wonder Woman was only slightly concerned but we both just wrote it off as well I do have crappy lungs and it wasn't anything serious. Which I mean it really is not. I do not think.
Friday i just spent the day washing my hair and laying everything out for Saturday because early morning and picking out makeup is not something I like to do. Don't get me wrong I love makeup and won't leave the house with out it. Because it's one way I calm down and one way I can express myself with out the concern of "am i triggering something."
Which brings us to Saturday!! Nursing pinning. I was still struggling a bit but it wasn't serious. I had gone part of the morning with out my oxygen. I was just sitting at a desk while Wonder Woman does what Wonder Woman does and that save the day, whether its for me or someone else its what she does. So I make it over to the hall where pinning starts, and while I was waiting for one of my "favorites." I was hanging out with another friend I trust who also is a nurse, and was selling t-shirts with someone I never met and someone I didn't like. Which I know how to not like people and still be kind to them. Its the way it should be. I asked the one I didn't if she was a "beach" employee and she said yes, you were suppose to teach for me but something happened. I immediately new who she was and remembered what happened that month. Which isn't something I care to remember. Which I told directly and respectfully. That "something" was a major lung infection I was suppose to be admitted for, but couldn't be cause a family member had half her tongue removed and it was my responsibility to care for her. While getting up a 2 am for treatment, 5 am for manual chest PT, to get up at 7 to do more treatment and care for my family member. While Wonder Woman maintained work and help me to keep me alive. I was on antibiotics for a month strait!!! She never replied back. My favorite came and saved me!! lol Turns out she's a peds nurse and didn't grasp how deadly that could have been?? No really I know
So I sat down and someone asked me who I was since they never seen me and if I worked at the Beach campus, I said no I was Wonder Woman's daughter and I teach on some occasions as a guest on what life being sick is like. I always hide out in her office to make myself scarce when I need to. She asked about my oxygen, I explained my health, and she just looked at me and goes your lucky to be alive. No, really I am, I just wished she knows how true that statement really is. She maid a point to keep an eye on me to, knowing what all this meant. She also got to see me short of breath on oxygen as well. I also got to see some of the people I have grown to love over the years. Who I also found out was a Peds nurse.
But it made realize this: There are 2 types of people in the world. One's that truly care and one's who think they are entitled. Sorry y'all, you are NOT entitled to me speaking, I do because it is what I love to do.
Then I spent all day yesterday sick and on oxygen and medication. Lots and lots of meds. I was so tired and so sick.
I guess that bring us up to date haha
Love Y'all
~Poppet
Friday, May 1, 2015
CF Aware
Today is the first day of cystic fibrosis awareness month. Though most of my blog talks about this because my POTS usually under control. This past week has been a little symptomatic with my POTS but we will talk about that later.
This is the month where "we scream a little louder for a cure." But I guess this a good time to tell you how overwhelmingly sick I have been with CF this past month.
It has been almost a month of never ending sickness. I get off antibiotics for a few days and then I am right back on them for almost a week. I have been very dependant on my oxygen. Using it around the clock. I am on steroids every other day to a week or so at a time. Due to all the swelling in my airways with pollen season, I have not been able to efficiently clear my airways. Which means more mucus sits in my lungs, which puts me at a higher risk for an infection.
If I am out for more then six hours that infection is right back. 24 hours laters I have a fever. I am sure this is more so because I have the bacteria permanently colonized in my lungs. We have under control enough to cope with it. I am on around the clock benadryl because of this to. Between my MCAD and the my nasty airways its needed. Some days that I have to go out, Wonder Woman is coming for a parking place up close because me walking on oxygen even has been rough. I cough, wheeze, my heart sky rockets and I just feel as though I am going to collapse. It's awful.
I've been on oxygen to the point, I went to wipe my noes and it was nothing but blood. Something I have only told Wonder Woman. My airways are so dry from the oxygen that they are cracking and bleeding. My chest aches from the coughing and pressure and most night I go to sleep with a heating pad on my chest to make it bearable to breathe. This has been a more recent thing, or well more frequent i should say.
I sleep propped up and oxygen. Some morning I wake up and my lungs are still stiff, most I am ok. But I can't sleep with out it.
And my weight?? The only reason I don't have a feeding tube is because my doctors seen how much I can eat. My weight is low to the point I am considered under weight but my labs are decent and again I can eat a LOT. When I am sick I am more dependent on smoothies then food though.
Life gets rough when it comes to my health. I spend hours doing treatment. Though I can say I have a truly amazing life. Because people around me make it so.
Enough depressing stuff for now.
Love Y'all
~Poppet
This is the month where "we scream a little louder for a cure." But I guess this a good time to tell you how overwhelmingly sick I have been with CF this past month.
It has been almost a month of never ending sickness. I get off antibiotics for a few days and then I am right back on them for almost a week. I have been very dependant on my oxygen. Using it around the clock. I am on steroids every other day to a week or so at a time. Due to all the swelling in my airways with pollen season, I have not been able to efficiently clear my airways. Which means more mucus sits in my lungs, which puts me at a higher risk for an infection.
If I am out for more then six hours that infection is right back. 24 hours laters I have a fever. I am sure this is more so because I have the bacteria permanently colonized in my lungs. We have under control enough to cope with it. I am on around the clock benadryl because of this to. Between my MCAD and the my nasty airways its needed. Some days that I have to go out, Wonder Woman is coming for a parking place up close because me walking on oxygen even has been rough. I cough, wheeze, my heart sky rockets and I just feel as though I am going to collapse. It's awful.
I've been on oxygen to the point, I went to wipe my noes and it was nothing but blood. Something I have only told Wonder Woman. My airways are so dry from the oxygen that they are cracking and bleeding. My chest aches from the coughing and pressure and most night I go to sleep with a heating pad on my chest to make it bearable to breathe. This has been a more recent thing, or well more frequent i should say.
I sleep propped up and oxygen. Some morning I wake up and my lungs are still stiff, most I am ok. But I can't sleep with out it.
And my weight?? The only reason I don't have a feeding tube is because my doctors seen how much I can eat. My weight is low to the point I am considered under weight but my labs are decent and again I can eat a LOT. When I am sick I am more dependent on smoothies then food though.
Life gets rough when it comes to my health. I spend hours doing treatment. Though I can say I have a truly amazing life. Because people around me make it so.
Enough depressing stuff for now.
Love Y'all
~Poppet
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