Today seemed to be a day of positive reflection for me. Yesterday was the 2 year anniversary of the passing of my Scottish Terrier Ali. As I was remembering all of the great and funny times we had, I could not help but to think about the day he died. I remember donating all of his stuff the animal hospital and going home pulling the cover over my head. I did not leave the house for several days after his death. Then one day there was a knock at the door. Contemplating whether or not I was going to answer, I sat there in silence. The knocking only got louder. I finally went to the door and it was my neighbor. I am sure she was frightened of the sight that came to the door because I was looking the way I was feeling, A COMPLETE MESS. She told me she hadn’t seen me outside for several days and she wanted to make sure I was doing okay. I muttered something to try to get rid of her, but it did not work. She continued to tell me how she enjoyed seeing me and Ali outside playing around and that he would not want me to isolate myself. I thanked her for coming over and told her I was going to get out of the house. She told me if I didn’t she would be back and she was going to assist me. We laughed and I shut the door, but I knew she was as serious as she could possibly be.
On yesterday while I was working, there was this loud, strong knock at the door. Gambino and I looked at each other. He started to bark and I started to ask him questions like “who is that knocking like the police? Why are they at my door? and Where is the bat?” I finally made it to the door and there stood this beautiful little elderly woman with her cane. It was my neighbor’s mom. When I opened the door, she said ” my daughter told me to come and knock on your door if I wanted to turn the TV on in the living room because the last time I tried to turn it on the repairman had to fix it!” I laughed, grabbed Gambino and went over to help her. While I was trying to figure out the television remote controllers, she went on to tell me how much she enjoys watching me walk Gambino. She especially likes when he puts the leash in his mouth and walks himself. She reminded me of the time he ran up the street and when I started chasing him, I lost a shoe. We laughed and I offered to give her Gambino because clearly he was a bad puppy!
I get messages from some of my friends on social media that say they look forward to reading my posts because they can count on them being hilarious or inspirational. I never knew people were enjoying them. I try to share things that touch me in some way and can hopefully do the same for someone else. You never know who is watching you. You never know what kind of impact you can have on a person’s life by just doing typical everyday things. Who did you notice today? Did you say something kind to anyone today? Sprinkle kindness on everything!
I hope everyone is doing well. It has been a stressful, rollercoaster past few weeks. As unorganized and all over the place as I have been, I am thankful that I am here. Still moving forward, still pushing, REFUSING TO BE DEFEATED!
As many of you know my mommy just had triple bypass surgery. Yes, this is a major procedure. When she first told me, I have to admit I was taken aback. I immediately went into mommy protector mode. While trying to stay positive with my mommy, I began to prep and plan trying to get everything done before the date of her surgery. I did not want her to have to worry about anything. After I hung the phone with her I sat here at my desk wondering what I was going to do next. First thing I did was ask God to watch over and heal my mommy. I explained to him how much I loved her and how much I needed her. I continuously prayed and prayed and anything trace of fear I initially had disappeared. I had to choose fear or faith. I chose faith.
With everything going on of course I started to reflect on the days of when my daddy was sick in the hospital. I honestly think God knew I was about to spiral down a never-ending rabbit hole of emotion with these thoughts. Instead I thought about the things my parents told me at some very difficult times in my life. I narrowed it down to two for the sake of not writing a book. (More to come in future posts!)
- I traveled home from Atlanta on a stormy day to visit with my daddy when he was in the hospital. This was actually one of the last visits I had with him before he passed away. So it took me a while to get there and when I did I was so tired and hungry. It’s like I can see his face now. When I walked in the room he smiled and said “hey baby!” I spoke and told him it took me forever to get there because it was storming. I told him I was hungry, but that I didn’t need to eat because I was fat. Daddy looked at me and said ” Landa you are not fat. I wish I looked like you right now. You are so beautiful.” Of course I told him ” I get it from my daddy!” We both laughed. You see, at the time my daddy had lost so much weight because he was sick, he didn’t look like himself. I grabbed his hand (which I just loved) and told him thank you and that I loved him. There I was complaining about the way I looked and all he could see was his daughter that he loved and that loved him so much. That’s all that matters.
- I called my mommy one day like I try to do on a daily basis even if there is nothing going on. Well on that particular day, I was having a bad day. My feelings were hurt about work and my lack of a social life. I remember being at the point of tears. Just before a tear fell my mommy said to me,” Baby I wish you could see yourself through my eyes. You have no idea how wonderful you are.” Of course many tears fell after that. When I got off the phone with my mommy all I could do is smile and thank God for her. She had no idea how what she said made me feel so much better. Words from her mouth went straight to my heart.
I carry my parents with me daily. It doesn’t mean that I don’t mess up or make mistakes. It means that God does not make mistakes. It means my parents belong to me and I to them. Even when we have had our WTF moments, rough spots and truly asking if there was a mix up at the hospital. I means I was, am and will always be loved by them, as I love them.
Things have a way of coming back full circle. I have been lucky enough to be with my parents during their times when they were vulnerable and sick. When they needed me most. I use the word lucky because it is something I am more than happy to do. They have taken care of me all of my life. The good, the bad and the ugly. Yes it has been ugly because no matter the ailment, I told my parents about it! LOL! I know as children we can never repay our parents for everything they have done, but it is nice to show them the unconditional love they have shown us.
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”
How many of us wear an invisible veil each day? So many of us are afraid to show others how fragile or vulnerable we are from day to day. We have to keep this stoic facade in fear of being judged in some way or another. I will be the first person to raise my hand, especially with the last few days I have had with HS. Honestly, it feels like HS has had me in the a chokehold. I have always took pride in myself for being an open book, what you see is what you get. This belief took a shift when Hidradenitis Supprotiva has tried to take over my life. Of course my family, closest friends and fellow comrades who have HS understand, but what about everyone else? What about the people I meet when I am at the bookstore? What about the people I see as I am walking Gambino? What about the people I work with? What if they saw my “cracks”?
In one of my previous posts, I wrote about one of my cysts I called Bertha because she was a beast. I am glad to say, she finally burst. Just as I was about to get ready to do my happy dance, HS said “hold my beer!” She did not leave without leaving her mark on me to let me know she came, she saw and she attempted to conquer. There is a painful hole where she used to be. To keep the hole company, I am having not only new cysts, but everything is flared up. I honestly think all of this was triggered by stress. The not so funny thing is I was stressed about Bertha and not being able to walk. HS is a constant stress circle. As I limped into my physician’s office this morning, I passed a young lady who stopped me to tell me she really liked my hair. I smiled at her and with what little energy I had said “thank you.” I continued to limp into the office, I couldn’t help but to think what if she knew it took me 2 hours to shower and get dressed? ( I hope I remembered to put on deodorant) What if she knew each step I am trying to take is shooting severe pains all over my body? What if she knew about all of the cysts and flares that were having their own party on and inside of my body? What if she actually saw what HS looked like?
After spending all day in severe pain, I have had time to think about my cracks. I really did not have a choice because it hurts to sit and it hurts to stand. I was forced to lift my veil and be honest about how I really felt. Most of the time I am happy go lucky, but not everyday. I hurt. I cry. I have pity parties. I get scared. I need help. We don’t take off our veil because we don’t want others to see our truths. If something happens and our truths are seen by others, they sometimes blame us for being so stoic and not saying anything about it. Some may even blame you for being truthful because it causes them to reflect on their lives and their truths. We all know, life is short. Spend the rest of your days walking in your truth. If your veil just so happens to blow off or if you decide to take it off, hold your head up high and make no apologies for being human.
“There is a crack in everything.
That’s how the light gets in.”
― Leonard Cohen
As the year is about to close, I am hearing more and more people making New Year’s resolutions. I have never really been good at making or keeping those promises. I remember one year I resolved to stop saying bad words. I made the resolution at midnight and I did well until I got out of bed. Then there was the year I resolved to cook everyday and not eat out. I honestly tried, but I ended up wasting so much food because I have not yet mastered how to cook for one person. I don’t like leftovers and I don’t like messing up my kitchen.
After those failed attempts I decided to take the pressure off of myself and resolve not to make anymore resolutions. Instead, I decided I would do my best each day and try new things even if I have to do it afraid. I look back on the year and it has definitely been full of mountains and valleys, but in the midst of it all some small things that I accomplished are turning into wonderful beginnings of much larger things. So many of us overlook the small things because they are not often flashy or big public displays, but they matter too.
Here are some of the things I celebrated this year by dancing when no one was watching or by jumping up and down on my bed:
- Learned how to use an IPad even though I am a dedicated android user
- Went an entire week with a pain level of 5 instead of 10
- Upgraded my car on a rainy day
- Started writing my story for my book
- Danced with my granddaughter
- Told someone no and did not feel the need to explain
- Started saying yes more than no
- Started my LLC
- Investing in marketing my business
- Wore a tank top with the bandages under my arm
Celebrate getting dinner on the table before 10 o’clock. Celebrate not being stuck in traffic. Give yourself a pat on the back for choosing a salad over a cheeseburger or for choosing a cheeseburger over a salad. There is no such thing as something being too small to celebrate. We have to celebrate even the smallest of things while we are on our journey through life. It’s about the journey and not the destination.
“From small beginnings come great things.”
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.