I can't believe its been almost a year since i have started IV treatment for POTS. Although its been a rough year. So far I have survived and have received part of my life back! I do not know where I would be with out this treatment! Admitted all the time? Frail? Bad lungs or well worse lungs? A bad heart? Not on the verge of going back to school. I'm so thankful to be blessed with treatment!
I am sure your wondering what IV treatment I get. I get normal saline in my IV at home. What saline does for certain POTS patients is help keep them hydrated. Most POTS patient wants they reach the point of dehydration they tend to become symptomatic. Which usually translates into a rapid heart rate, sometimes i go into an off heart rhythm (dysrhythmia), become short of breath, black out, pass out, and in me it triggers off my asthma. Staying hydrated is VITAL for a patients with POTS. With my saline i still drink so much water its ridiculuous. But I am not going to complain when I have most of my life back. I remember when I had Sepsis within the 5 day stay i had received almost 30 liters if not more. I had such a high fever they couldn't keep me hydrated. They also discontinued all my meds so that did not help. It also put my blood pressure in thes 70s! NOT good!! I have had it lower so i was not worried at all. The doctors were in a state or worry and I'm like um what? Its YOUR fault.
I've had a rough journey with home health. Well not them to be honest the system I am with has been great. Wonderful angels that have been brought into my life. But with my PICCs, I had a horrid reaction to one, i had sepsis in the other, and so far this one has been OK. Which I am thankful for. I am super paranoid since the sepsis has been recent, now I am at risk for sepsis again. So its been a battle. Buts its a battle worth fighting, and I know this war is not over. It will be a long road but its really is worth fighting. I couldn't imagine not having this life. A semi-active life with over protective people trying to keep me safe. All of us work together as a team to keep me out of the hospital.
I have lost many people along the way. But I have gained a few to. I have gained people who I can't imagine living with out. Near and far. I have been blessed with truly amazing people in my life. Some I met on farmville (hush), some i have met in hospitals, and some have been there all a long. Life has amazing ways of working things out but is so worth it. And through God's grace I have survived this long road.
I must get going I promised Wonder Woman dinner. I am telling you once a Chef always a Chef!
Chef Poppet signing out :-)
Love yall
~Poppet!
Wednesday, March 27, 2013
Friday, March 8, 2013
What i wish people understood.
Things that I wish people knew, if not understood. Chronic illnesses has taught me many things, some only people that live with a disease will know or understand. Some people understand out of love and compassion. They are 1 in a million however one would not be more blessed to have them in their life. I know I am! Before I ramble like always here are things that i wish people understood or knew.
It's not that I don't want to: Because the reality is I do want to. I really do. However, I must choose between life and death. Or living in or out of the hospital. I often to get yelled at, put down, or walked out on. I wish they would know, I am literally waying my odds. Is what I am about to do going to put me in the hospital or kill me? If the answer is yes to one of them I am not going to hang out or be apart of it. If a person truly loves you, they will support you and say I understand what are you able to do.
I never asked for this disease. I can see the looks on your faces thru the screen "you got to be kidding me." No I am really not. Many times people blame things happening on me when its out of my control. Oh you got admitted again won't you ever learn not to put your health at risk. Your sick again!? Why didn't you strengthen your immune system? In bed again? Stop being lazy! Why did you put yourself in harms way?! I have never once intentionally put myself in harms way! I don't want to lay in bed all day. My immune system was suppressed for a reason on top of what it naturally is. Yes there are ways to strengthen but we have to way the risks. I do not want this disease. I was giving this life and I am going to take advantage and change the world.
Why can't you just compromise with me? Yes I have been asked this. Refer back to part one. I want to but again. Weighing the odds. If it's not the worth the risk. Why can't you just come over and sit with me?
Can;t you just wait to take your medication until later? No. No I can't. If I am telling you I need to take it, my body is telling me I need to take it.
Why don't you gain some weight it will help stabilize you? You don't think I have tried? I eat constantly, with what is safe for me to consume. I have to disease fighting against me. I constantly struggle with this. My labs read I am OK. And when they do not they are fast to treat. I have the justice league on my side. They are also fast to admit me. What I need is water weight to keep me where I need to be. If I am able to talk to you, I am where I need to be.
I am sure most of you are in awe and can't believe people have said this to me. I hear this often if not constantly. I have almost gotten to the point where I am just want to make a recording or a quick text to send this stuff to people when they start up. However, we take it with Grace. Or, frantic calls to Wonder Woman, freaking out cause I am upset once again.
Please learn to understand people with Chronic Illnesses.
Well I'm off for now.
Love Yall
~Poppet
It's not that I don't want to: Because the reality is I do want to. I really do. However, I must choose between life and death. Or living in or out of the hospital. I often to get yelled at, put down, or walked out on. I wish they would know, I am literally waying my odds. Is what I am about to do going to put me in the hospital or kill me? If the answer is yes to one of them I am not going to hang out or be apart of it. If a person truly loves you, they will support you and say I understand what are you able to do.
I never asked for this disease. I can see the looks on your faces thru the screen "you got to be kidding me." No I am really not. Many times people blame things happening on me when its out of my control. Oh you got admitted again won't you ever learn not to put your health at risk. Your sick again!? Why didn't you strengthen your immune system? In bed again? Stop being lazy! Why did you put yourself in harms way?! I have never once intentionally put myself in harms way! I don't want to lay in bed all day. My immune system was suppressed for a reason on top of what it naturally is. Yes there are ways to strengthen but we have to way the risks. I do not want this disease. I was giving this life and I am going to take advantage and change the world.
Why can't you just compromise with me? Yes I have been asked this. Refer back to part one. I want to but again. Weighing the odds. If it's not the worth the risk. Why can't you just come over and sit with me?
Can;t you just wait to take your medication until later? No. No I can't. If I am telling you I need to take it, my body is telling me I need to take it.
Why don't you gain some weight it will help stabilize you? You don't think I have tried? I eat constantly, with what is safe for me to consume. I have to disease fighting against me. I constantly struggle with this. My labs read I am OK. And when they do not they are fast to treat. I have the justice league on my side. They are also fast to admit me. What I need is water weight to keep me where I need to be. If I am able to talk to you, I am where I need to be.
I am sure most of you are in awe and can't believe people have said this to me. I hear this often if not constantly. I have almost gotten to the point where I am just want to make a recording or a quick text to send this stuff to people when they start up. However, we take it with Grace. Or, frantic calls to Wonder Woman, freaking out cause I am upset once again.
Please learn to understand people with Chronic Illnesses.
Well I'm off for now.
Love Yall
~Poppet
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