Thursday, March 30, 2017

Invisible Pain Day Tasks

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.
I ended up having to climb in my cart to get my Orgain as they place it on the top shelf. I always look for a helper but they are never findable when I am buying Orgain lol so I improvised. I shouldn't be climbing in my cart. I know. But I got it and felt rather like Wonder Woman. With severe tachycardia.  (I'm contemplating asking a manager if they could move it on the shelf since I am most likely the main buyer lol)  I then got some more essentials... Ginger ale, juice, canned mandarin oranges, & bananas. That's when I realized I basically must be having a rough week to have a cart full of liquids. But I'm not sad or mad. In fact I am so grateful even when I basically go through phases of full liquid diets. It's all good! Like truly my heart is full. I eat by mouth. Some adjustments are made at times but I have not just overcome this challenge I have learned how to balance liquid nutrition. I also have been really feeling like finding and trailing more foods to eat. Especially drinks/smoothies/blendederized foods. Gastroparesis is truly a condition that weens and wanes You simply roll with it and you just ride the tide. Also going to the store to get some groceries made me feel normal again! (Like the little things folks) I also had to get gas in my car for my trip to therapy tomorrow and go to the pharmacy I think for the 3rd time this week! All with very high pain. My days are filled with a lot of medical things. And these things most people don't know or see. I have an invisible full time job taking care of my body. It's true I spent the whole day Monday on the phone all for medical. My GI did contact me back (well I contacted them back they never called me back) yesterday, and I will see him the end of April to go over options... I don't know what my options are with him. (I kinda question if he believes me because he didn't the last time I saw him) but I know I am the boss and I will do what I think is the best for me. (Which I think I already have that plan figured out) I am very concerned my current feeding tube is going to fall out like my old one did. I just keep having this instinctive feeling about it... I don't like that! I have been trying to get a g tube to have on hand at home for just incase...(tubes wear out. They have to be replaced regularly)  Because if I loose a tube I have to go to pheonix and then my stoma would close up and I'd need to have it recut. Which would mean surgery. Most people have G tubes on hand for this reason. People that only have G tubes also can change out their own tubes at home. Unlike a J tube that has to be surgically placed. I wish they would order it and get it to me because my GI agreed to this 6 months ago. But he is "busy" now and that's his answer for everything "I'm busy".  Hey I am busy too!! So this situation makes me nervous! If I do loose this tube and don't have a back up plan and get pushed backwards. It won't be pretty. I don't like fighting with doctors or being forceful to make them do what they say. Bottom line this tube is worn and needs to be replaced... Anyways just an update on the GI tube situation... Time will tell all.
In the meantime I will enjoy what I can and be happy. Bask in the sunshine! Despite the wind -Chelle 

Thursday, March 23, 2017

Gastroparesis choices?

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... 
& This silly Dog and I 
Gastroparesis is having a kitchen full of food, feeling starving, & having no appetite at all... All at the same time. I started this hungry thing last night but nothing suffices. So I keep sipping Orgain. I had breakfast but I don't think it's absorbing fast enough. It seems to just be sitting in my stomach. It's always such a strange thing when you are starving but your body doesn't really want anything. Yet it wants food because it's telling you it's hungry. And then you realize your in the middle of a bodily fight.  Either way I loose. If I eat too much and give into the hunger, I will get pretty sick. If I totally ignore it and give into the lack of appetite I loose nutrition... That I clearly need. Hey body? don't you see my efforts today? Nope? These are the days a feeding Tubie isn't so bad... I can have formula and makeup the difference. With what is going on I am going to be talking to my GI. I want to have a Gastric mic-key button on hand. April is 6months of having my current tube. (G&J) At 6months my last tube literally broke and fell out. I had to drop everything and be taken 5hours away to a hospital equipped for me. I was hospitalized because I could not take any meds or eat by mouth then... I also took the whole summer to regain feeds and I got very weak. So the time has come for decisions. I've been thinking on this for a very long time & I think I have made it. Going to see if we can go from a GJ to just a G tube since I still use formula daily into my belly. I keep pushing forwards. I will get there. I've already made major strides. You guys it is truly miracles. I credit Heavenly Father. He told me he would make me better and He sure has stuck by that! He did too say I would not be cured & I am not. But what I am is very grateful!! Just what 7 months ago... I was drinking though my heart via IV fluids/Port daily. My J feeds were so low... And now I eat food by mouth and use a can of formula to supplement (but it goes into my belly) that's so huge! The formula is full nutrition that I struggle to get like veggies and fruits. I can't digest them. So I have to supplement those nutrients. We are moving towards just Orgain as its a replacement. But I am still formula weening.  I think the best option is to move to the G tube because it gets used. The j hardly gets used and I think it's time to take the training wheels off... Plus if I have a G tube on hand I can replace it on my own. J tubes have to be done under surgery as they go into the small intestine. So if this GJ I currently have breaks (the g tube would be a great backup plan that shouldn't push me backwards at all) and the G tube leaves me with a tube and keeps my stoma open if I need to return to a GJ in the future.(stomas close within hours) I think some time with a G tube is a good solid plan. I put the calls into my GI and we will see if He agrees. That was a big deal for me to make that call today. A very big move. Moving forward in faith not fear! I have some anxieties. I also scheduled to see another hand surgeon today (fingers crossed this one is the one. Surgery is so tiny My health conditions not so tiny) I'm excited to keep moving forwards. Prayers, faith, hope, & spunk will get you through -Chelle 

Thursday, March 16, 2017

Thinking spot

I had a rough & tough week. I had big POTS flare up. (I haven't don't this in 6months) but I have been praying for guidance and I took matters into my own hands and changed things up and it worked for me last night. (That sweater is so true #bless this #mess! Especially this week!) 
I finally slept. I woke up a whole different girl. I'm alive again!! (Phew, that was scary I won't lie. But I kept praying, I kept trying) so today.... One of my favorite things to do is enjoy a nice car picnic. (If you don't know what a car picnic is, it's when you eat in your car  in a simple spot.)  My thinking spot is My old stomping grounds. We grew up there. We spent summers there being free and happy as bees! Dirty feet, water, sunshine, fun.  It makes my heart smile. It was simple times and it's a simple place that always brings happiness. You can feel your childhood calling you! So I go eat my lunch there and enjoy the pretty outside. My body can't always do the old things. Sometimes I can't physically take a walk or go outdoors but I can always go back sitting in my car. I can still enjoy the view. I can still go there. I can still sit and ponder. That I am thankful for. I'm thankful for bites of food, iced tea, fresh air, sunshine filled blessings! It's the simple things in life-Chelle                     Oh yes, I gained a good pound and a half! I had my three week weight check and I gained!! So I am not technically underweight today! That's a happy ending dears!💕 

Monday, March 13, 2017

Scuffed boots

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

Speaking Up Port 101

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 time again

It's Endometriosis Awarness Month.
I've been through many different treatments. I have gone through 3 surgeries to remove Endometriosis. I also have had the nerve that sends the Singal from uterus to the brain cut. That did not work. My pelvis is injured from the Life with Endometriosis. I have seemed therapy for years. I will have future surgeries for Removal of Endometriosis. I've also had Botox injections twice for hopes of pain relief. (Due to my now known case of Dysautonomia that's not an option.) I see top surgeons in the country who only specialize in pelvic pain. They have been true lifesavers! I suggest finding a pelvic pain specialist! They have a lot more resources and are so much more advanced them a typical gyn. (No joke these people changed my life for the better!)  The only option to "end this" would be to do a hysterectomy. I am 24. A lot of people think getting a hysterectomy is easy. It is not easy. In any circumstance. Especially at 24. I've had Endometriosis for ten years now. I'm not totally sure I believe hysterectomies are really a fix. Sure they help but is that really the best idea of a cure? Millions of females start this painful disease in their teens. I was 14, when my symptoms were unbareable. You can not have a hysterectomy until after a certain age. It's too dangerous. Teens shouldn't live with this mess of pain and symptoms. I don't see that as a treatment. The only other option is hormones. To regulate the bleeding. Women with Endo can bleed for months at a time. These horomones do not always fix that either.                
Today I picked up more "horror mones" aka horomones. To add to the ones I'm already on in hopes of future relief. I tend to do poorly on these and have a lot of side effects. Some unbelievable. I'm always nervous to start or try new ones. I mentioned after my last surgery in July that they found my uterus is enlarged and soft a clear indication it's full of Endometrosis. It's so enlarged it appears the early stages of pregnancy in size. (But it's simply just full of disease) On one note I now understand why ultrasound techs would be so mean to me when they ask the famous pregnancy question during ultrasounds to check for ovarian cysts... I always wondered why they were so harsh and glaring at me like I was lying? I was not lying... And I had these tests in high school and they were so much more calm. (Well that situation now makes sense) However they can't do anything about it... The only way to know for sure is to do a hysterectomy and send my uterus off to the lab. (One day that will be done) it's not dangerous nor does it effect pregnancy. But it does cause me pain.  Endo is no joke. It's painful. It grows on your organs. Yes my organs. Vital organs get covered in disease. It causes debilitating pain. The only way to remove the disease or manage it is to cut it out... In some cases that even means cutting out or removing pieces of organs such as the bowel. It's not just cramps. Learn the more @ -Chelle