Love is a powerful word. I often times wonder when some people say it, if they are aware of what it really means? When I think about love, I think about my family and friends who mean the world to me. The older I get, the more I realize how important it is show and tell the people in your life you love them because things can change at the blink of an eye. The chance may pass never to return again. Before I had my son, I would often hear my mother, grandmothers and aunts say there is no love like a mother’s love. I didn’t know what the big deal was. My thinking was hey they are supposed to love their kids because they had them. It was a given. Right? The early morning when I had Christopher (on April Fool’s Day mind you!) my heart and my mind went through a complete transformation. I actually fell in love with him the moment I laid eyes on him. I knew then I loved him more than anything in the world and I would do anything to protect him. I wanted the best for him and I would do anything to make sure he had everything he needed and some of what he wanted.
Fast forward 24 years he is now a man, but he will always be my little boy. When I talk to my son Christopher, I make sure I tell him I love him before we hang up. Sometimes I get a clear I love you and other times I get a low mumble that I assume is a hurried I love you. When I see a sad Tide commercial or see an old baby picture, I text him to say I love you son more than you can ever know. He will say “I love you too mom” or “yes mom I know you love me.” Which makes me cry even more. Before Christopher went to his duty station in Alaska, we spent some quality time together. We laughed and cried. We shared memories of daddy and how he has influenced our lives.
The main thing I wanted to make sure he knew then and always know is that I love him unconditionally. There is nothing in this world that can separate the love I have for him. I told him I have always loved him even when he did not always do things the way I would have. I told him at the beginning and end of the day, he will always be my son and I love him. Through all of the arguments and disagreements I still loved him. As life goes on, I am sure we will have more arguments and disagreements and at the end of it all, I will be there to love him.
There are so many people in this world who are only loved based on conditions. There are so many people who cannot tell those they love or that love them that they are gay, have a different religious belief or even something as simple as they don’t want to go to college because of the fear of being disowned. It is not our job to judge, it is our job to love UNCONDITIONALLY. It is important to live in your truth no matter what it is. If that means you love with conditions, then say ” I love you if…” If you love unconditionally say “I love you even if…” You decide on the way you love and how you want to be loved.
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!
4 days into 2018 and lessons are literally appearing from the most simple things. When I got up on the first morning of the new year, I was very excited. I found myself thanking God for allowing me to make it yet another year. I was and continue to be excited about my journey I am yet to complete. Any day above ground means He is not done with me and I still have a purpose here on this earth. I know life gets hard sometimes and the feeling of defeat may find its way into our mind, but we have to keep going.
I would like to share some lessons I have already learned this year with the help of perspective (and Gambino):
- Trust- Gambino was crying in his crate at night even though he did not have to go outside. I finally figured out he didn’t want to sleep in the crate. I was so scared to let him stay out all night, but I would never know how he would be outside of the crate unless I trusted him at least once. I put one of his beds at the foot of my bed before I went to bed and when I got up the next morning, there he was curled up in a ball waiting on me to awake. I had to take the first step and trust him. Sometimes we have to step out on faith and trust everything will work out for the better.
- Hidden In Plain Sight- Since Gambino was out of the crate, I knew he had to use the restroom and I needed to rush him out to the grass. I was running around looking for this thin black leash and I could not find it. I looked in its usual spot and it was not there. I asked him where it was and he wouldn’t tell me so I finally had to use the back up leash. As soon as I came back in from walking him, I sat on my couch to warm up. As I pulled my black comforter over my feet, the thin black leash dropped to the floor. There it was hiding in plain sight. It was not lost, it was where I left it. Panic should not be our go to emotion when we think something is lost. It’s more likely than not, hiding in plain sight.
- It Has Always Been In Us- For those of you who know me personally, you know I don’t make new years resolutions. I stopped making those several years ago when I finally realized it was a trap. When the clock strikes 12 and the new year arrives, it is a new day. The day before was once a new day as was the day before that. A clock is just a clock, the real change has to be in your mind. When you make your mind up to begin something, it is only at that time change will take place.
Join me and look for life lessons in the most simple of things. Open your mind and change your prospective towards things. God does not always make a huge production when He teaches us, sometimes He uses the smallest things we tend to overlook.
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.