Tag: chronicillness

Hold On or On Hold?

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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.

 

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.