Hold On or On Hold?

Sometimes I feel like my life is on hold. You see HS is holding on for dear life and there are times when I (yes me) feel defeated. Today is one of those days. When you are in pain and unable to function, there is a lot of time to think about things. Even things that you don’t want to think about. There are many people I know with HS that have other issues going on because of HS. For example, significant GI issues and migraines from stress. I look at it like one big vicious circle of pain. I have chronic pain and I know from being a therapist how pain medication can often times have a negative effect on your life.  I decided not to seek pain management through prescription medication. That is a decision I made for myself because I know myself and on days like today (and everyday this week) everything HURTS! I don’t think there is enough of anything on the planet that would help. On top of all the pain I was dealing with you know that things can and did get worse. HS was like “hold my beer!” As you know I take Humira  weekly. I was just informed that my copay is $3000.00 each month. Thanks to the changes of my current insurance. That was like a punch in the gut. I could not see straight. Was it the migraine, HS, treacherous GI issues or just life? All I know is everything was hurting and there was nothing I could do about it.  This morning as I was getting up to get ready for work, HS said no. You see it invited 3 new family members to the party. What else could I do except cry myself to nap because I am unable to sleep well when I am hurting this bad.

I took a day off tomorrow because I planned to do something fun for myself. My fun day has turned into another sick day. This is why I never plan anything nowadays. I cried so much, my eyes and nose were red. Gambino did his job and tried his best to comfort me by being his cute self. I looked at him and told him that I really want to throw in the towel. It is not getting any better and I am so tired. By the time I finished uttering those words, a dear friend of mine called me. I told her I didn’t feel well and she asked me why didn’t I call her because she would’ve come over. I told her I did not want to bother her and that I thought I could handle it. For all of those who know me, you know I began to cry harder. Just when the ugly crying began, my wonderful son called me. You see today is his wedding day. He is in Fairbanks Alaska and I am in Atlanta Georgia. He was going to have it in June in Texas, but he had to move the ceremony up because there is a strong possibility he will be deployed to Korea very soon. Christopher called to tell me how he was feeling on this day about getting married and how much he loved me. As he was sharing his feelings with me, I couldn’t help but to think how lucky I am to have him as a son. A son that loves me enough to share things with me and thinks I am such a wonderful person. He is why I hold on. He is why I won’t throw in the towel. I have to continue to try to be strong for him. I know Kali and Chris calling me when I was at one of my lowest points  was God’s way of saying I am not as alone as I feel right at this moment. I even got a package in the mail from my friend April. She sent me a pair of Wakanda tights.  They are gorgeous! She knows I am for everything Black Panther. Her note was so kind and just in case you were wondering I ugly cried. LOL! It meant the world to me. She had no clue how much I needed her kind words.

I said all that to say this, hold on everybody even when it hurts. We have either been in a storm, getting out of a storm or getting ready to go into one. As I am writing this, I am realizing I needed to have those ugly cries. They are helping me put things in perspective. Maybe I don’t need to continue to take Humira because it is definitely not helping me. I think I may have developed anti-bodies to Humira when I stopped taking it and started the HS trial. So there is an option. I guess we will see what happens. Right now, I am going to try to hold on as best I can.

 

(Insert Colorful Verbage)

When I was thinking about a title for my post, all I could think of were words that were not appropriate and since my mom reads my blog, I decided against it. So I decided to let all of you use your imagination. Pain is as real as it gets. If I don’t actually say to someone I am in pain, my body does it for me. When I am unable to walk, sit or stand without crying I am in significant pain. I feel vulnerable when I am in pain and if I lived in a perfect world, it would be my best kept secret. On days like today, vulneralbility be damned because my feelings and emotions are all over the place. I want to have a pity party and be sad, but part of me is just so angry.  I feel like knocking down every door and wall in sight because I feel like no one understands or is even trying to understand what it is like to have Hidradinitus. It is a condition that will test you in each and every area of your life. It’s not like a headache that comes and goes. HS comes, sets up shop and builds an entire community.

Today I feel defeated. HS won the battle. I wasted time I will never get back trying to explain to people who sit behind a desk, identify me by a number and have no clue or care about me or my life, how much pain I am in on a day to day basis. It was like trying to explain the smell of an eyeball. I have to admit, there are days I want to take pictures of all of the areas of my body that are and have been touched by HS and send it to people like them.  I know I have said before I would not wish HS on my worst enemy, but today is not that day. I don’t think the “powers that be” will completly understand HS unless they or someone they love all of a sudden have this awful condition.

HS is sometimes considered an invisible illness because not all the cysts and scars are visible when we are fully dressed. I feel like I have to convince people I am sick because I don’t look sick. I didn’t ask for this and I don’t want it. Today I am not as strong as I would like to be. Today is a day I wished my dad was still alive so he can defend me to the bad guys.  Today is a day I wish I lived with my mom so I could crawl in her bed and cry while she tells me I am going to be fine. Oh well, today is over and I will live to fight another day tomorrow. I am going to bed and pull the covers over my head!

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