Tag: pain

Going Through It, To Get Over It!

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Hello to all of my favorite readers out there. Thank you for stopping by. I am so happy you are here! I hope you are feeling good today. Guess what? I am!  No, doctors have not found a cure for HS this month. I know like everything else, this is temporary, but I am going to ride this good feeling out until the motor drops on the ground and the wheels fall off.

I have been having really vivid dreams lately about my daddy and all of my grandmothers’. I didn’t think anything of it until it started to happen each and every night. As some of you know, they are all deceased. The dreams had to mean something. I began to write down what I remembered immediately after I woke up. I discovered each and every night, Mudea, Momma Dosie, Daddy, Momma Mae and Momma Ola were all rooting for me. In each dream, each interaction they were telling me to keep going. I hear it now so clearly, “Landa don’t stop, don’t give up, I am here.” I woke up with tears in my eyes and smile on my face. I know they all are here watching over me. You see, I never told anyone about my last pain cycle with my HS but my mom. Only she knew how bad I felt and how down I was. My mom said those same words to me. It was at that moment, I told my mom I had to go and I would call her back the next day. I started to focus on my family and friends that are always rooting for me. I said okay and little by little, step by step, I began to feel stronger than I was before.

I had literally already talked myself out of going to see Iyanla Vanzant at the Fox Theatre. Maybe someone else will buy my ticket, I thought. Besides, it was a fabulous seat. The thought of having to change out of my pajamas and getting dressed up was too much for me to think about. Then there was traffic. I would have to leave at 5:30 and who in their right mind would get into traffic at that time? Not to mention, I would be exhausted from working all day. It was just too damn much! Just as I was about to post my ticket for sale online, I sat down and was still. I sat still, took a breath and began to laugh. Who said I had to get dressed up? I can go as myself. Iyanla said she focused on healing and not image. So I removed that self placed pressure I created and decided whatever I put on I would be fabulous. You know why? Because I am fabulous. Why was I worried about traffic? I had not been in my car all day and I am sure it was nothing me and Ludacris could not handle with a little “Move B***** Get Out Tha Way!” Step by step, little by little, I got dressed and out the door I went.

The Fox is a beautiful theatre and there were so many beautiful people there. The funny thing is I met so many people that were there alone, but we ended up leaving together as sisters. When Iyanla hit the stage, the crowd went wild.  Okay, full disclosure, I wanted to run up on stage and steal a hug. I decided against that because I did not want to go to jail and end up on YouTube. The show was so powerful you could feel the energy, connections and people getting stronger. You had to be there to experience it.  Some things she touched on that really spoke to me were:

  • Sometimes we have to ask God to soften our heart. Forgiveness is rough!
  • When we use the word fear, it’s not that at all. It’s not being in control of the outcome.
  • Never underestimate the ruthlessness of the ego.
  • Be mindful of the things you think about and what you place your focus on.
  • Be careful what you tell yourself about yourself.
  • All thoughts are neutral. They have no value or meaning until we assign it.
  • We focus on negative emotions more than the positive ones because of the emotional pulse attached to it.

Her book “Get Over It” is a must read. It is not what it sounds like. She is not saying get over it in a flippant manner, but in a way that teaches you how to leave the negative behind so it no longer holds you hostage.

I plan to keep this good feeling going for as long as I can. HS, anxiety, depression, anger nor excuses will stop me!  I want all of us to shoot for the good feeling. If you are unable to show up for yourself, it’s okay, I WILL SHOW UP FOR YOU! We are all in this together. We don’t have to do it alone.

I love you all to life!

Landa

 

(Insert Colorful Verbage)

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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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Take Off Your Veil, So They Can See Your Cracks….

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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

Bad Flare Life….

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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.

One Foot In Front Of The Other, With Blinders On……….

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There is no perfect time to write. If I waited until I felt 100% then I would never have started this blog. Today has been a most trying day. Now I know thinking I am in control of anything is an illusion, but I really thought I had a handle on my HS for today. I was so prepared. I went to bed early last night  at a normal time, got up early and I even made breakfast. Yes, I was going to make this day submit.  As soon as I started my errands this overwhelming feeling of lethargy came over me. The yawning began and the thoughts of my king size bed began to dance around in my mind. All of a sudden, it seemed as if the abundant amount of Atlanta traffic had tripled. Everyone driving was on their cell phone, not paying attention to the lights. Motorists were blowing at other cars and pedestrians. That’s it! I was determined to go back home. I could not figure out for the life of me, why I was so sleepy. Then I realized chronic fatigue is just one of the many, many symptoms of having Hidradenitis. There are days I can try to forget HS, but it is always there to remind me. If not with painful cysts and boils, with lethargy, headaches, nausea and sadness. I was determined to get at least one thing done off my list. First on the list was to get gas. I found the nearest gas station and completed the task. After that, I made a B line back to the house.

It felt like I was all dressed up with nowhere to go, except I couldn’t go anywhere. I did not have the energy or the strength.  Might I add, I was looking very cute. I actually got dressed and put on my nice clothes. When I am in my Hello Kitty pajamas and a bonnet, it seems like I have the strength of a thousand men and I see each and every one of them when I walk my dog Gambino. Honestly, I don’t have an in between style. I am either really cute or I look like I just woke up. (definitely not like Beyoncé) Now my mind was riddled with anxiety about not getting my list done and other things I thought I had put completely out of my mind. Things like waiting on the results of my CT scan and if I should start this whole meal prep thing. Wondering if I should watch the health movie on Netflix that everyone is talking about because they insist on telling me about how everything including the sun is bad. How am I going to meal prep when everything is bad?  Forget meal prep, how and where am I going to go to get whatever it is I am going to buy? That’s when I decided to take a nap and hit the reset button. When I finally awoke, hours had gone by. Still no groceries and nothing else checked off of my list. I looked around and all I saw was my puppy Gambino, who also had just woke from a long nap. He was so happy I was home with him. I looked at the list and then I looked at him, back to the list and then him. I decided I would take Gambino for a walk and discuss everything with him. We walked and even stopped and smelled some flowers. Then I realized I would finish my list the way I was walking Gambino, one step at a time. I would not allow anything else to get in the way to cause anxiety or the feeling of defeat. If that meant I had to imagine myself with horse blinders on then that’s what I would do. I was able to check a couple more things off my list and decided to try again tomorrow.

Coming From All Directions

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I made it. I survived my dad’s birthday without completely falling apart.  Of course there were tears, but I can honestly say happy tears. As I sat in pain all day because the cyst on my abdomen had ruptured, I smiled and thought about the pain my dad was in with renal failure. I sucked it up as best I could and continued with my day. I planned on it being a great day with nothing but happy thoughts and memories. It was a good idea at least. I ended up watching the news and felt my heart breaking all over again. Hurricane Harvey has literally destroyed the lives of so many people. I watched as families lost everything they owned and still managed to be thankful just for being alive. I wanted to do something to help so I decided to donate. As I was walking to the room to get my wallet, a sharp pain from my abdomen took me to my knees and I was literally helpless. The cyst had torn and gotten worse. I looked down and felt so defeated.

I sat on the floor for an hour after I went to what I call my medical bag and cleaned the wound. That was my day, gone. I did not feel like bandaging up and going out. I am sick of wearing tights and t-shirts because to those who don’t understand Hidradenitis it looks like you are just being lazy and not wanting to dress up.  The more and more I thought about how HS just changed my plans, the more and more angry I became. Then my puppy came in and sat beside me looking as if he was saying, “Ok Momma what  is plan B, I am here to help.” A tear dropped and I told him we needed to get the wallet to donate to those affected by the hurricane. It was not about me or my pain, but about helping someone else. The pain is always going to be here until a cure is found. I can’t wait to be kind until I feel great because I would never be. I looked around to see what I could hold on for balance as I got up.  I grabbed my chair and rose to my feet. Every step I made towards my bag felt like a gang of people doing the electric slide on my stomach as I lay on the floor cheering them on. Finally I got to the wallet and donated in the name of my father. He was so kind and never focused on his pain. Neither would I.

I was able to make it to my recliner once I finished with my computer. The recliner was my bed and Gambino slept in his tent after fighting sleep like an infant. I was not able to make it back to the bedroom. It was too far. I stayed in the chair until morning. I will get up and try again.

A Day To Remember……

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Today is August 28, 2017, my father’s birthday. Wow that was so hard to write because my father passed away in September of 2006. I have dreaded this day since August 29, 2016. I didn’t know how or what I was going to feel when I woke up this morning. Much to my surprise, I woke up feeling “okay”. I went about my normal routine of walking my dog Gambino as soon as my feet hit the floor. No time to check the bandages or see if there are any new cysts that made themselves home overnight. We walked outside and that was when it happened. I saw the trees blowing from the cool wind, the birds were chirping and the sun was peeking through the clouds. I knew that was a sign from daddy that he is okay. Today was going to be a good day. My physical pain was low and mentally I was constantly reminding myself my dad wants me to be okay. Let’s see what happens.