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