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.
HS be damned. You did not win! I did. I have been looking forward to the arrival of Black Panther since last year. Matter of fact, I think that is when I purchased my prescreening event ticket. It’s hard for me to plan anything because HS is very unpredictable. I decided to let the chips fall where they may because nothing was going to keep me from this film. Besides, one of my dearest friends is an extra in the movie. Which to me is the same as her having a leading role. The day before the event as I got up to prepare for work, a sharp pain brought me to my knees. I knew better to ask what it was about. I knew it wasn’t the flu, but HS related. I had one of the worst flare-ups I had ever seen or felt. Every scar and every open area was red, enflamed and angry.. AT ME. The first thing that came to mind was OMG what am I going to do with my ticket because I will not be able to walk. I sat on the floor and devised my plan. Thank goodness I had my cellphone because I did not know when I was going to be able to get up. My entire day consisted of Clorox baths, various topical medications and a solo rendition of the horizontal polka. Thursday morning arrived and I felt like a kid at Christmas. Black Panther is here! Black Panther is here! As was the pain! There was a silver lining. I was at least able to walk a little. All I needed to do was get my hair styled, shower, get dressed, get in the car and to the theatre. That was my to-do list for the day. It was touch and go there for a minute, but I managed to make it. There were many breaks in between and even a few tears, but I persisted.
When I got out of my car, I was immediately greeted by this beautiful lady that said ” I love your shirt, your hair and earrings. Welcome. We are so glad you’re here.” I was shocked. I could not believe there was a welcoming committee for the movie. She asked me my name and I told her as we were walking toward the theatre. She finally asked me if I was here for the volunteer work. I was like “ummm no, I’m sorry I am just here for the movie.” We both laughed and hugged. She introduced me to the rest of the volunteers and we all had a laugh. As I walked into the theatre to find my place in a line, I saw all of the Black Panther posters and instantly got goosebumps. People were trying to buy tickets and they were sold out until Tuesday. I was so happy I had my ticket already. I walked around looking at the posters and a young lady walked up to me and asked me if I was here to see Black Panther. I told her yes and she replied ” so am I let’s sit next to each other.” More and more people arrived dressed in their t-shirts and African attire. Everyone was hugging, laughing, and taking pictures. I was okay with being there alone because it was like I was attending with my family. It was amazing. This is not a fad. This is a positive movement.
I won’t spoil the movie for those of you who have not seen it yet. I urge you to go and see it as many times as possible. This movie made me feel amazing both during and after I finished watching it. I am so proud to see people on the big screen that look like me play such positive and profound roles. Killmonger’s role as the villain is just as important as T’Challa’s role as the hero. Africa is being shown as this bountiful and beautiful not impoverished land. Children have their superhero that is not a slave, crackhead or criminal. While I know Wakanda is fictional, this movie is pushing me outside of my box. I want to know where I came from. I want to explore my family history. I want to do more in the community and the world. If nothing else Black Panther has shown how we all can come together for a common interest and make a difference. We can do great things together and make a difference. I want to continue to take this feeling with me not just this weekend, this month but forever. WAKANDA FOREVER!!
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!
I read something funny online the other day about having everything going the way you planned. It read “each time I have all of my ducks in a row, one of them waddles off.” I laughed and was testifying to the joke until I read one that accurately described me at the time, “I don’t have any ducks. I don’t have a row. I have squirrels and they are all drunk.” Just when I think I have everything organized and flowing smoothly, life says “hold my beer!”
It can feel like you are sinking in quicksand when problems arise out of nowhere. Unfortunately we can’t plan for everything. We don’t know when our children are going to get sick, when our car is going to break down, when our job is downsizing, when we get sick or even when we are going to have a stressful day. It seems like when you fix one thing, another one arises. About 5 days before Christmas, I ended up having a really bad flare up. It was so bad I looked on Web MD (never do this when you are sick, you will end up feeling like you only have 24 hours to live!) and I had diagnosed myself with cellulitis or shingles. I could not take anymore pain, so I ended up going to the doctor. Turns out I had a bad reaction to some medication I was taking for HS that caused the breakout and flare up. This could not have happened at a more inopportune time because it was only a few days before Christmas and I still needed to work. On top of being sick, I was stressed out about being sick. Finally, I had to come to terms that I had no control over what was going on. I was only able to control my response to it.
As I reflect on the days I was sick, I have been trying to find the point of it all. Sometimes, it’s hard to find the point through the pain. I believe in God and I have faith that whatever I go through, He will make sure it ends up working out for my good. The point in my pain for this flare up is about to turn into something wonderful for me and other HS sufferers. I made flyers about 2 months ago to start a group for individuals with chronic illnesses, even though I had a venue and support lined up, I never got around to giving them to my physician to give to other HS patients as a resource. Now that I have to see my physician for additional follow-up, this is the time to give her the flyers and start working on my HS groups. This flare up has also ignited a fire in me to provide more awareness to HS so other people can understand what it is and how it affects those of us who suffer from it.
The point in your pain can be hard to see sometimes, but it is there. Maybe God sees you are getting too comfortable in a position and makes it uncomfortable so you are forced to do something different. Just maybe the relationship did not work out with that person because he or she was not the right person and you had to free yourself for who you deserve. Maybe when you get sick, it is then you see how strong you are. Everything happens for a reason. We are unable to control the variables, but we can control our response to it.
“And we know that all things work together for good to those who love God”
What did I do different? Was it a different food or ingredient? Did I wear a different material or was it just stress? Then the ugly realization that this is my life with HS just hit me. I have a cyst the size of a lemon on my abdomen. I woke up to this surprise on early Monday morning. I was unable to sleep the night before. There was so much tossing and turning, I finally got out of the bed. On the way into my home office, I felt a sharp pain on my abdomen. I went to the bathroom to check it out and there she was. She was only the size of a walnut then. Now she is the size of a lemon. I think I will name this one Big Bertha.
It hurts when I sit. It hurts when I stand. I hurts when I lay down. It hurts when I breathe. My wardrobe until Bertha leaves will consist of oversize shirts and hammer pants. (While I am dressed like this, I promise I will see a celebrity or my crush!)I had so many plans for this week and now I have had to change them. HS has taught me how to write in pencil because I definitely have to erase and edit my life almost daily. I have managed to work and take hot baths since her arrival. I try to play with Gambino when I can. He is learning all about HS and I am confident he will understand just as Ali did.
I wanted to write about something different, something more upbeat but HS pushed itself in front. I have no control over when I have bad flare days and try really hard to push through and take them when they come. I told my readers I would be honest with them about HS and this is definitely one of those days when what I want to do and what I am able to do don’t match up. I am definitely going to try again tomorrow.
I have added more pictures on the HS page of my blog. You will see some of the most beautiful and handsome people in the world who also suffer with HS. We will not hide and we are not alone.