I never thought there was such a thing. I only heard it said when someone was frustrated about something or when Charlie Brown just couldn’t cut it. I’ve always associated grief with crying and being sad. Just a dark cloud of loss and pain. I remember when my father died. I didn’t know which way was up. I was doing fine as long as I was in Alabama with the rest of my family. As soon as I got back to Georgia, that is when it all hit me. I had to try to live in a world where my father physically wasn’t. I felt all alone in this big bad world. Although we didn’t live in the same state, I somehow felt protected by him. I can recall not wanting to go outside and at the time, I couldn’t understand why not. I guess that’s when the grief started. Until then, I guess I was on autopilot. I would try to watch television and all I would see were fathers and daughters. When I finally got up enough strength to go out, I was constantly being reminded that he was gone. As I looked around and so many people still had their fathers and mine was dead. I became so angry at everything and everyone. Why did my father have to die? Why not take a bad person that was not contributing anything to society? I did not want to see or hear anything about anyone else’s father because it was not fair. I didn’t want to go back to Alabama because he was not there. I could not explain the sadness and sorrow I was feeling. No one would understand I lost the first man I ever fell in love with. No one knew how we talked daily and most of times, it was about nothing at all. I just wanted him to know I loved him as much as he loved me. I did not want to be reminded of any good times because it hurt so bad. Nothing in my life had purpose. I didn’t want to finish graduate school or anything else I was working toward because he was gone. I stayed in this fog for a long time and had no plans getting out of it.
One day those thoughts and feelings changed. I was talking to my son Christopher and he said ” Momma I miss paw paw Mike so much. I don’t know what to do.” As a mother, you don’t ever want to see your child, no matter what age , in pain. As the tears rolled down my face, I said to him ” you continue to allow your paw paw to live through you. You talk to him and you remember all the wonderful time you two spent together.” Where the hell did that come from? Was that momma bear Yolanda or therapist Yolanda? Whomever it was seemingly gave me permission to go on with my life and still have my father with me during each and every step. I finally understood that grief manifests itself in many ways and it does not always mean crying and anger. Of course I know the 5 stages of grief: 1. Denial & Isolation 2. Anger 3. Bargaining 4. Depression & 5. Acceptance. The realization I had was that it does not always happen in order and there is no time limit. I have my good days when I can watch the Twilight Zone and think about how that was our favorite show and just smile. Then there are the bad days when I want to call him to tell him how sick I feel and then I am reminded he will not answer the phone because he is not physically here. The only difference between now and then is I am not paralyzed by grief, but I use my “good grief” to celebrate my father’s life and to stay connected with all those I love. I will talk about him to anyone who is willing to listen and I cry when I need to.
Today was a mixture of both. Before I saw the doctor to get my CT scan results, I was so nervous. All I could think about was how I wish my father was here so he could make me feel better. He knew how to keep me from worrying and make me laugh about something silly. I wanted to be able to call him while I was speaking with the doctor. After everything was said and done today, I was able to talk to him about it anyway. My father is always here with me. He is watching over all of us. I even reminded him about a previous conversation about neither one of us being worth a squirrel fart due to our illnesses. I was able to laugh and keep calm during rush hour Atlanta traffic thanks to him.
“Fathers and daughters have a special bond.
She is always daddy’s little girl.”
― Richard L. Ratliff
I thought I had trained myself not to be allergic to Mondays. For as long as I can remember all I have ever said was “I hate Mondays!” Yes I know, I sounded like a kid who didn’t want to get up to go to school. The adult in me insisted I not give a day of the week that much power. Well I was reminded today on why Monday is not my friend.
Take out the trash, drop clothes at the cleaner, find someone to donate the backpacks to, run by the bank and return all the phone calls I received today were all of the things I wanted to get done today. Have a lie down and binge watch Doc Martin is what I actually wanted to do. I decided to take my sidekick Gambino with me to help. Unfortunately this meant I had to put on a bra. I didn’t want to slang and bang all over the place. I put on my beautiful blue tank and started on my journey. As we were going to the cleaners I felt the air blowing on my arm and I realized I had not bandaged my arm before I left. Panic consumed me. I even thought about turning around in 5 o’clock Atlanta traffic to go back home. I knew if I turned around I would not have ventured back out. I decided to keep going and I could hold the clothes with one arm and Gambino in the other so that no one would see it. I looked like a struggling clown trying to juggle an elephant. I basically threw the clothes on the counter and embraced Gambino like he was my shirt. The cashier wanted to play with him, I said we were in a hurry. I did not want her to get too close, nor did I want to put him down. I did not want anyone to see how HS has taken over my left underarm. It’s dark, full of scars and is also active with cysts. What if she asks me what happened? How would I explain? What if she has a look of judgement on her face and then I go the hell off because I am embarrassed? Too much to think about and too much to deal with on a Monday. We made our narrow escape.
I have been thinking about the cleaner caper all evening. About all of the anxiety and shame I had around someone seeing my arm. It really felt good to wear a tank top like a normal person and enjoy the breeze on your arm. I wasn’t able to enjoy it. I was in my own way. Who told me to be ashamed? Who said it was ugly? Who said if someone sees it they will judge me? Moreover, why would I care? It’s the negative self talk we impose on ourselves spilling over into our world making us think that everyone else feels the same way. Not only is it not true, but it’s not fair to us or the people we interact with. Tomorrow is a new day and I am going to try again.
Shame is the most powerful, mater emotion. It’s the fear that we’re not good enough-Brene Brown
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.
I looked at my calendar today and I have so many appointments this month, I should literally think about sleeping in my car. HS seems to be the thread that is affecting all of the goings on in my body. I ended up going to see my GI doctor last week. I knew there was something wrong with my stomach. HS affects every part of my body. Fast forward to diverticulitis, CT scan and possible colonoscopy, I am just over everything. Some days it’s like all I have time for is to be sick. It can be a bit much sometimes. Can’t I just stress out over the “normal” stuff like everyone else?
There are times when I look up from own life to try to participate in living among others and it can be overwhelming too. I want to do so much, but I don’t have the energy. I have so many plans to cook, clean, volunteer, dance, date and write letters the old fashioned way. Yeah, if I do at least one of those things each day, I have literally won! Not everyone understands how HS basically dictates almost everything in your life. So now we have had Harvey and Irma and all their devastation. Now I think there are two other storms coming too! Sheesh! Donating and prayer does not seem to be enough, but it’s all I can do right now. Don’t even try to watch the news because if it’s not about politics it’s about the looming possibility of war. Having a son in the U.S. Army comes with its own anxiety. Traffic accidents, robberies, assaults, inclement weather, job stress, life stress, climate control, financial stress it’s a wonder anyone can literally get out a bed each day. There is so much going on in the world and we should all be tired.
So when do we take a mental break before our mind, body and soul does it for us? Honestly, there is not a designated time so we take the little moments as they come. As I writing this post, I am doing one of my favorite things. I am listening to Insecure on the television laughing as if it is the first time I am watching. After this, I plan to go to my room and turn on my sound machine and listen to the ocean while I read. I have learned the hard way, if you don’t dump the day, you wake up the next morning and repeat it.
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.
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.
This is the post excerpt.
Woosa….. I have to take a breath. So much pressure surrounding my very first post. Well, here goes… hey ya’ll! Yes I am an Alabama native and it definitely shows. I started this blog with not only myself in mind, but with all of us who have an illness that is not always visible to the naked eye. I mean sure I can just lift up my left arm and play connect the dots with my cysts and scars, but I don’t go around pit flashing people! I have Hidradenitis Supprotiva. It’s a mouthful, so HS for short is perfectly fine. It is very painful and can be very debilitating. With all of the pain, bandages, inability to wear white clothing or plan an outing on any given day, this can also cause even the strongest person to be sad. That’s why I decided to start this blog to not only bring awareness to HS and other chronic illnesses, but to provide motivation, laughter and therapeutic approach to living life. I want to get to know my readers and share in our journey. I will share information about HS and mental health as well as some of the anecdotes and quotes that keep me going. As you know there are days when I say NOPE and pull the covers over my head and I plan on sharing those moments too. I am looking forward to getting to know and hearing from my readers. Let’s do this…. (together with some assistance because I can barely walk today!)