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.