Thursday, March 30, 2017
Today was rough around the edges but by looking at me you would never have known. I had painsomnia last night and probably fell asleep finally around 2 am. I woke up as late as possible this morning knowing I had a full afternoon. My Endometrosis/Adenomyosis pain level is high. Too high. (I hate those pain charts. In a scale of one to ten they ask... My responses to these questions are normally 50 or 100) but I wanted to get dressed and do my hair and feel semi human despite the pain. So I did it. I was going to hurt no matter what I did today. I also could not take any pain meds because I had to drive and obviously you can't do both... So I trudged through! I went and had my labs drawn out of my port.
We smile and give thumbs up when we get needles in our chest 👍 Gotta check those electrolyte levels with these POTSie kidneys I own... I then trudged forward to Walmart (cover my eyes) I hate going to Walmart. It's always busy... I park Handicapped and there is always someone who has something to say about it! (I can hear you talking ever so purposefully loud two steps behind me. No, I am not lazy, nor am I borrowing someone else's handicap sticker) Or they just glare at me... I get that I don't look sick... I truly do but in all honesty We hate being the center of a judge mental skeptical! Younge people get sick too. Most disabitlies are considered to be invisible disabilities which means, You can not tell by looking at the person. That person looks fine on the outside. But I had to get Orgain! And it's the only place I can find it... And I basically live off it. So to Walmart in between appointments I went.
Thursday, March 23, 2017
Though its snowy and rainy today the past few weeks have been gorgeous! And this girl has been tolerating the heat! )you guys I couldn't even walk from the car into a building without getting heatstroke the past two years due to Dysautonomia! (Praying it lasts and I can enjoy the sunshine again like I used to) here are some of my good days away week 💕 I am so appreciative MY good days! The days I never thought I'd see again in this lifetime!! I am so blessed beyond measure...
Thursday, March 16, 2017
Monday, March 13, 2017
The other day sitting in sacrament meeting a new anology hit. (As I stared at the glitter felk upon my desk. Wait why was that there? I was having a good day? Oh my angel knew ahead of time I'd be feeling sickly soon enough. I quickly understood the need for glitter as my body took over the rest of my time there. But I got an answer I needed to know in my heart. Before havoc reached me... "Scuffed boots" it was a clear answer to my prayers. Sometimes when you are chronically ill or disabled, your instinct reaction is to cover it up. No matter what, where, or how I am doing there has always been a part of me inside that wants to erase it. I just want life to be "normal" again. I too want to be like everyone else. I don't think it's abnormal to not want to be ill. I think every sick person wants to be healthy fully. That's the goal. But sometimes it simply isn't attainable for all. Some of us come a little different or complicated. You may need a medical degree to know us. And that's okay. You know why that's okay? Scoffed boots.... I have a pair of cute black boots. I got them for Christmas. I loved these boots... I picked them out. And the very first time I wore these boots... I don't know how but they easily were scuffed. I was so mad! My new boots were permanently scuffed up after a few hours of use. Are you kidding me?! But then I laughed because those boots are just boots. I remembered how much I loved those boots and then I decided to wear those boots proudly. That scuff added character. I embraced the flaw, laughed a little & walked on proudly. Every single time I put My boots on I giggle when I think of the character I wear upon my feet... Those boots are more then boots they are a memory that brings me happiness. Happiness in simplicity. They are a reminder of how a little character is life changing. Those pieces that are hard to understand of me, My medical complexity just adds character. It's not all of me but it's a part of me. Sometimes we just have to except that chronic is a part of who we are. Yes, chronic comes with some baggage of some sort or another. There's a lot to construe. I have a lot of juggling in My everyday routine that takes up time and energy. Those are my attempts to fix the chronic as much as possible. To hide it away is my instinct but Heavenly Father doesn't want me to hide it away. What good would that do? What would I learn from My battles in life if I embrace them fully? If I didn't walk around with an arsenal of medical equipment in my purse... To combat my symptoms that are constantly changing from minute to minute. If I didn't have to think or plan every little thing ahead of time to my body's possible needs. Well I would be "Normal" I would be a lot more predictable! but those things are a part of me. The quirks make me a whole me. They keep me humbled among many things. But being different, has been a gift. Heavenly Father let these struggles in not just to build me. Nope, he knew I wouldn't be satisfied with just existing. He knew me. He knew My need to not just fight my own battles but the will in my heart to help others in the midst of it all. If I didn't have battles of health I would know very little about life. Oh no He knew I would find others. I wouldn't be able to take this knowledge and try to lend a helping hand without my character. Whatever that means. He knew I couldn't sit on the sidelines of anyone in the midst of a struggle earthly. That I would have to get up and try to help. And I'm glad I have character. Just like those "scuffed boots" a little character never hurt anything. So embrace your character no matter what it is in your life. When you kinda want to have new shiny boots but life gave you scuffed ones... Wear those scuffed boots with joy in your heart. Smile when you look at them. Don't kick them to to curb or wear the other pair. Wear them with dignity. Walk with your chin up confidently in those scuffed boots that Heavenly Father gifted You to let life change you for the better -Chelle
Thursday, March 2, 2017
Today I had an unexpected event. I went to get my labs drawn via my port. My usually peeps were not there. I used to do my own port care as you all know... But my doctor as of now doesn't want to get me supplies through home health pharmacy for just a lab every other week. (You see, I can not do my own labs at home... I have to go get them done.) I can access my own port a cath. But it's been pointless since off daily Infusions. (Until today) So I go and I put my trust in others. But today really caught me off guard. My new nurse
Put a dirty germy file on my "sterile field". I should have spoken up then. But I am tired of being the patient who is always speaking up. (You know the pain in the butt one) I knew that was not good nor safe. But I let it slide. Then my nurse brought all of my port supplies and opened them & sat them right on my now dirty field. (From where my dirty file was sat, opened, and roamed through.) She then proceeded to grab my sterile port needle with her bare dirty hands. She touched the needle itself with germy bare hands. Those needles are to be sterile for a reason. I asked her to put gloves on that very second... In hopes she would realize she was contaminating all of my supplies. She assured me she would. But first opened all supplies that are sterile with dirty bare hands. She touched everything. Then put gloves on? I should have refused. I should have left. But I did not. I did not because I am so tired of fighting with Heath care professionals to do their jobs right. They way to not endanger (Me)) the patient. It sounds simple. Just don't let them harm you. But it's not always that simple as the patient. Sometimes they let you second guess yourself. (I had spoken up a few weeks prior & it seemed pointless) Sometimes we don't want to be the bad guys for once. So I had a dirty needle stuck into my heart. Right into my bloodstream. (Dumb) I could go septic over this. It could kill me literally. But hospitals do not have to do these things fully sterile anymore. For reasons beyond me. Because it's dangerous. But the actions by my nurse today were completely inexcusable! That was not partially sterile at all! That was fully germ infested! Pure danger. So I second guessed myself into thinking it would be okay. I was overreacting...But the truth of it is... It is so NOT okay! The nurse just put me at a huge risk. And if she did it to me... How many others are getting the same treatments? Not all patients know central line care protocols. They just trust those very same nurses to care for them safely. But they are not doing it safely at all. Not there. I can now become very ill. I pray I will not. I'm still mad at myself... So now I will report it so they can hopefully get the training needed to not kill future patients. I will also be more bold in the future & stand my ground. I won't care about the nurses feelings. I will argue my case. I will get eyes rolled at me. I will be scoffed at some more. However, I will be safe and not sitting here worrying I'm going to go spetic. I know what I know. What's the medical world coming to when you constantly have to force nurses to do what they should already be doing in a serious nature? This is my bloodstream... I always wonder in these situations, if that was your family member would you have just done that so carelessly? It's truly frightening. Don't let any medical professional harm you. Take a lesson from my mistake today. Speak up. -Chelle
Wednesday, March 1, 2017
It's Endometriosis Awarness Month.http://www.endochallenge.com/2017 -Chelle