My battle with Hidradenitis Suppurativa has been getting on my last nerve!!

I have Hidradenitis Suppurativa. It is a skin condition that happened in armpits, groin, butt, under the breasts, behind the ears, in the folds of your neck, etc. I have tried topical antibiotics, oral antibiotics, Severe acne medicine, topicals and oral, and finally, I tried Humira injunctions when with my fear of needles. I'm done trying to control this condition because when I try this or try that, it never works. Now after some research, I found out that changing my diet can help. I love food! And my favorite food is pizza! The research I found says that yeast can cause the flare ups I have. So, starting Monday, February 11th, 2019, I'm reducing my yeast intake. Yes, that means no pizza, grilled cheese sandwiches, no bun on burgers, no peanut butter and jelly sandwiches, no bread, no beer, or any food or beverages that are high in yeast. I can't go on with my body causing me pain with Abscesses and boils and the fluid that comes out of them. I had enough of the pain and enough cleaning up "crime scenes" the bumps cause. I just want clear skin in the inferno areas. As of right now, my problem areas are my armpits and butt. So, every time I'm sitting, which is 24/7 because of my wheelchair use, I'm in pain! And when I move my arms up or down, I'm in pain! No medicine has helped! So, I prayed for God to take the wheel! I'm done dealing with it! Hidradenitis Suppurativa! It's time to go! 

Day 7- creative juices 6/15/18

I had a day full of creativity. I

Day 6- GETTER DONE 6/14/18

I had a day full of getting stuff done. When life throws you curve balls at 2 strikes you have to protect the plate. I got so news that made me go in "Getter done" mode. For my nosy, readers out there, sorry but this situation will not be discussed.  I needed to get information. Did that. ✔. After it all I feel so I'm powered! For life stuff and I dealt with it. I couldn't rely on anyone to help. Even though the information and situation wasn't directly my issue and people would say it's not my problem, I had to step up and "better done" for the person who needed that information.

So after that, I had trouble with finding a ride to my church. We have 2 weekly night services. One on Tuesday and another on Thursday. I get to Tuesday night bible study with ease. But when it comes to Thursday night prayer it becomes extremely hard to find a ride. Not a lot of people come, so people who can come pick me up goes down tremendously. So I had driver set up but she has an injury. I don't and would not let her drive me and have to do manual work while injured. So my hunt was one and I was unsuccessfully. I decided I will go to prayer when I start driving myself. It will be easier for everyone that way.

Day 5- Not a false alarm 6/13/18

So remember I said I was going to talk autonomic dysreflexia, well the day is today. I got dysreflexic. Meaning I was getting signs of autonomic dysreflexia. The sign starts with chills, Goosebumps, and a headache. When the headache starts it's all downhill from there. I get a fever and with me I get low blood pressure when quadriplegics get high blood pressure. Similar symptoms of preeclampsia in pregnant people. Anatomic dysreflexia can lead to Strokes, seizures, and even death. I had a few friends who passed away from this condition. It's no fun. Reason why we get dysreflexia is because of our level of injury. Our brain gets pain signals from the body and the brain tries to send pain signals back to identify where the pain is coming from but our spinal injury causes our brain to keep those signals and our body develops series of symptoms. So it's a guessing game on what is going on if you have no sensation. It could be a ingrown toenail, a full bladder or bowel, a burn or scrape, your socks might be too tight or a bladder infection , or any other infection for that matter. The list can go on and on and on.

Fast forward to today. Yesterday I said I had a false alarm, well today there was no false alarm. I got goosebumps, chills, and a headache telling me I need to poop. I couldn't wait until the afternoon when my second caregiver comes to relieve me of my number two. So instead of just getting dressed and going to therapy, I had to cancel therapy and start my bowel program. Thank God I didn't have an accident in bed. I knew I was full of crap that needs to come out.

Day 4- false alarm 06/12/18

When it comes to beings quadriplegia, you have little to no hand function. Depending upon your level of injury, you could have more or less than any other quad. Before my accident, I was clumsy! Not just a little bit! I was the most clumsiest person ever! It seems like I was in the ER every other month for having an accident like tripping over my own two feet or spraining my ankle going down stairs. So getting injured and being a quad did not help with my clumsiness. It enhanced it a hundred fold. So with my daily activities, my clumsiness made it hard for me to do anything. Dropping binders and folders and books on the floor made it difficult for me to maneuver in my own room. So after dropping every single book and notebook I have on the floor I drop a huge chair on top of it. So not only did I have to pick up the books off the floor  I have to pick up a chair off the floor also. I use a grabber to pick things up off the floor. I have two Grabbers and for some reason they both were out of my reach due to the things on the floor. The only thing I could pick up was the massive chair and that took all my energy and about 20 minutes to do. With all that energy expelled , I felt as if I was going to have an accident. But not just any accident, number two. Yes. Meaning I had to call my caregivers at work to see if any of them can come and change me. The only way I know that I had an accident if I get goosebumps . Yes I said it Goosebumps .  Goosebumps is an indicator of me getting autonomic dysreflexia .  I will describe autonomic dysreflexia another day. But the Goosebumps tell me that my poop  has reached the exiting portion of my body. With my Grabbers Out Of Reach, I wait for someone to get home to change my clothes and pick up my papers off the floor. So normally my Goosebumps do not lie however today was different. When my caregiver comes  and gets ready to change my clothes, my Goosebumps lied. There's no poop in the shoot! Not at all. I felt so defeated. I just knew something was going on! My day was ruined with clumsiness and false alarms but yet I live to see another day.

Day 3- poop!!! Read at your own risk! Its graphic!! 6/11/18

This was a typical Monday. I put some laundry away, "cleaned" my room, and did my my bowel program. For those who don't know, a bowel program is something people with spinal cord injuries have to do everyday or every other day. With my bowel program, my caregiver will put me on a shower commode and digitally stimulate my anal sphincter to help my body release fecal matter naturally. Sometimes, well almost all the time, my caregiver will have to digitally stimulate me until fecal matter can be reached and handled. I know it's graphic but that's how I poop! Education is needed! Knowledge is the key to life!! But...The rest of my night was full of me catching up on YouTube and conversation with my love.

Day 2- Disclaimer: bodily fluids will be mentioned 6/10/18

My day started off BAD! If any one knows about a neurologic bladder, then they would know that it's unpredictable. I get bladder spasms and I have to take medicine for those spasms. When I take my medicine on time like I'm supposed to, I expect  for my bladder not to spasm. So after draining my bladder the right before I go to bed, I woke up to my bedding soaked. My bladder can roughly hold almost  2000 cc's ( roughly 67 ounces). However my doctor doesn't want my bladder to be extended more than 700 cc's (roughly 23 ounces). My bed had at least 1500 + cc's saturated within it and I was still spasming and leaking from my stoma. So I began to take my catheter and drain thinking maybe it should be only a little bit left in there. NO... I had more than 1200 cc's (roughly 40 ounces) in my bladder. Enough to saturate another bed set.  I started a new  medication the day before  so I thought maybe it could one of the side effects of the medication. It was over 24 hours and your body is still getting used to the different medications. RIGHT? I had a day planned full of activities I wanted to do starting with church and ending with going to The Hip Hop Museum in Oakland. So I cancelled my ride to church because I do not trust my bladder at this point. But when I'm taking my medication and draining correctly and I'm still having accidents, I don't want to sit in church peeing on myself. Don't get me wrong, I have had accidents outside of my home before. Those times I felt so embarrassed and couldn't explain why I have a puddle in my lap. Trying to cover it up with a bag, a sweatshirt, or even a blanket. It's the most embarrassing thing. Not to mention the smell. Even though it's something that happens and I have no control over it, I still get embarrassed and I feel ashamed! So I ended up staying home watching what I drank and try to relax and get my mind off of my bladder.  All in all I had an bad morning but an okay day.