Me and My Wonky Heart…..
Not sure where to begin. To be honest it’s odd to talk about my condition so openly. Not that its a secret….just not talked about a lot. I’m 29. I have had PsA for a while now….a good nine years. I didn’t find out about it until last year. Last year I landed myself in the hospital with a full blown flare up…blisters and all. My daughter at the time had Hand, Foot, and Mouth…and momma got it too. I struggled with psoriasis…I don’t know since my early twenties. Only a spot here or there, and it would go away.
After I had son in 2010, I stayed in a constant flare. It only got worse as the years went by. 2014 rolled around and I found out I was pregnant with my daughter. I had to go on bed rest from my fourth month until I had her two weeks early. At the time my doctors knew I had psoriasis and mentioned it was an immune thing, and thought that was why my body kept trying to shut down with her. I almost lost her, and delivered months early because my body couldn’t handle everything pregnancy brings. At the time I was told to wait until the baby was born then start looking into getting my condition taken care of. No big deal…until you have her and parenthood takes over. My health went on the back burner. She was three months old when my gallbladder had to come out. Took care of that….fast forward to December 2015…hospital here I come with a full blown flare. Never in my life had I ever felt so much pain. You’re talking to a woman who has went through two C-sections, one with full internal bruising. Well, that got me going to but myself first and get better or try to at least.
Finally got into the specialist by Feb. 2016. After all the hoops you have to jump through I finally got my answers. Not only do I have PsA, I have RA. Every joint affected. Yes every single one. From the top of my neck down to my chubby swollen toes. Sadly by this time my right knee is completely done for, surgery is the only help I can do for it. My right rotator cuff….well on its way too. Started out on Otezla, loved it. No side effects, did wonders on my skin, not so much for my joints. We ( my wonderful supportive Rhummy) decided to add Methotrexate. No dice. No joint help…I needed more sadly.
We are trying out Consentx now. Actually showing some reduced swelling so I’m hopeful! By this time I’m starting to have fluttery heart beats. No big deal at first. I’m strong. You have to be to deal with this kind of pain. I can handle all the pain this can bring, I have a support system that’s unbelievable. God’s on my side, I will pull through it all. Only….the fluttery beats turn into missed beats….or the complete opposite…thumping beats, like my heart my actually be trying to get out of it’s cage. So after a long wait and hold ups and insurance issues I finally get into a cardio. I get my echo, and a fancy event monitor to wear for a month. I’m so happy to say that today marks my last day on the monitor!! Not so happy to say I already have the results of the echo….one of my heart valves are leaking.
Enter full blown panic. I’m young, I’m healthy, I have a family. What am I going to do!? My big heart appointment is March 28th…This is when I will find out what my options are. Now, by this point I’m sure your all wondering what does my heart have to do with PsA? Well, I’m here to tell you that PsA and RA can affect your heart. It can cause all kinds of crazy things to happen to your body…from your eyes to your feet, and yeah your heart. All of your connective tissue in your heart and around your heart can be affected by PsA. So here I sit, with my wonky heart. I sit and wonder if I could of stopped it, or prevented it, or got treatment sooner would I be in better shape. I sit and think and hope and pray I don’t need surgery. Sitting here getting life insurance at the age of 29 so I don’t leave my family in debt. Getting all of my kids paper work, and school work in folders so just in case my husband will have a bit of a easier go of things if I go too soon.
As I said earlier…I’m strong. Didn’t know I would have to step up that game and become stronger. But I will. I will get through this. Not because I want to but because I have too. So here I sit with my wonky heart, being as strong as I’m able and telling my story. If you read it and want to ask questions, I’m an open book. I think it’s time for me to be.