I looked at my calendar today and I have so many appointments this month, I should literally think about sleeping in my car. HS seems to be the thread that is affecting all of the goings on in my body. I ended up going to see my GI doctor last week. I knew there was something wrong with my stomach. HS affects every part of my body. Fast forward to diverticulitis, CT scan and possible colonoscopy, I am just over everything. Some days it’s like all I have time for is to be sick. It can be a bit much sometimes. Can’t I just stress out over the “normal” stuff like everyone else?
There are times when I look up from own life to try to participate in living among others and it can be overwhelming too. I want to do so much, but I don’t have the energy. I have so many plans to cook, clean, volunteer, dance, date and write letters the old fashioned way. Yeah, if I do at least one of those things each day, I have literally won! Not everyone understands how HS basically dictates almost everything in your life. So now we have had Harvey and Irma and all their devastation. Now I think there are two other storms coming too! Sheesh! Donating and prayer does not seem to be enough, but it’s all I can do right now. Don’t even try to watch the news because if it’s not about politics it’s about the looming possibility of war. Having a son in the U.S. Army comes with its own anxiety. Traffic accidents, robberies, assaults, inclement weather, job stress, life stress, climate control, financial stress it’s a wonder anyone can literally get out a bed each day. There is so much going on in the world and we should all be tired.
So when do we take a mental break before our mind, body and soul does it for us? Honestly, there is not a designated time so we take the little moments as they come. As I writing this post, I am doing one of my favorite things. I am listening to Insecure on the television laughing as if it is the first time I am watching. After this, I plan to go to my room and turn on my sound machine and listen to the ocean while I read. I have learned the hard way, if you don’t dump the day, you wake up the next morning and repeat it.
I made it. I survived my dad’s birthday without completely falling apart. Of course there were tears, but I can honestly say happy tears. As I sat in pain all day because the cyst on my abdomen had ruptured, I smiled and thought about the pain my dad was in with renal failure. I sucked it up as best I could and continued with my day. I planned on it being a great day with nothing but happy thoughts and memories. It was a good idea at least. I ended up watching the news and felt my heart breaking all over again. Hurricane Harvey has literally destroyed the lives of so many people. I watched as families lost everything they owned and still managed to be thankful just for being alive. I wanted to do something to help so I decided to donate. As I was walking to the room to get my wallet, a sharp pain from my abdomen took me to my knees and I was literally helpless. The cyst had torn and gotten worse. I looked down and felt so defeated.
I sat on the floor for an hour after I went to what I call my medical bag and cleaned the wound. That was my day, gone. I did not feel like bandaging up and going out. I am sick of wearing tights and t-shirts because to those who don’t understand Hidradenitis it looks like you are just being lazy and not wanting to dress up. The more and more I thought about how HS just changed my plans, the more and more angry I became. Then my puppy came in and sat beside me looking as if he was saying, “Ok Momma what is plan B, I am here to help.” A tear dropped and I told him we needed to get the wallet to donate to those affected by the hurricane. It was not about me or my pain, but about helping someone else. The pain is always going to be here until a cure is found. I can’t wait to be kind until I feel great because I would never be. I looked around to see what I could hold on for balance as I got up. I grabbed my chair and rose to my feet. Every step I made towards my bag felt like a gang of people doing the electric slide on my stomach as I lay on the floor cheering them on. Finally I got to the wallet and donated in the name of my father. He was so kind and never focused on his pain. Neither would I.
I was able to make it to my recliner once I finished with my computer. The recliner was my bed and Gambino slept in his tent after fighting sleep like an infant. I was not able to make it back to the bedroom. It was too far. I stayed in the chair until morning. I will get up and try again.
This is the post excerpt.
Woosa….. I have to take a breath. So much pressure surrounding my very first post. Well, here goes… hey ya’ll! Yes I am an Alabama native and it definitely shows. I started this blog with not only myself in mind, but with all of us who have an illness that is not always visible to the naked eye. I mean sure I can just lift up my left arm and play connect the dots with my cysts and scars, but I don’t go around pit flashing people! I have Hidradenitis Supprotiva. It’s a mouthful, so HS for short is perfectly fine. It is very painful and can be very debilitating. With all of the pain, bandages, inability to wear white clothing or plan an outing on any given day, this can also cause even the strongest person to be sad. That’s why I decided to start this blog to not only bring awareness to HS and other chronic illnesses, but to provide motivation, laughter and therapeutic approach to living life. I want to get to know my readers and share in our journey. I will share information about HS and mental health as well as some of the anecdotes and quotes that keep me going. As you know there are days when I say NOPE and pull the covers over my head and I plan on sharing those moments too. I am looking forward to getting to know and hearing from my readers. Let’s do this…. (together with some assistance because I can barely walk today!)