Selena Gomez Shared Her Story So Here Is Mine
You never know what someone else is going through just by looking at them. Everyone is going through something different, something happy, something sad, something scary, etc. I want to share my journey so that someone else can relate.
Here Is My Story
Here is a story about me. A little over 4 or 5 years ago, I went to my regular physician and told him that my knees felt like muscle going through those saltwater taffy machines you see on the pier where they make it fresh. That is the only way I could describe the feeling and that my knee pain kept me up at night. I was obviously done growing so it wasn’t that. Maybe it was restless leg syndrome. Instead of jumping to conclusions, he gave me a blood test. The results came back normal except for one thing – CRP which is also known as c-reactive protein. It is something that gets affected by inflammation. It was at an 11 and normally, it is supposed to be 1 or under. He sent me to a rheumatologist he knew. Her and I went through everything. We took our time trying to solve the mystery. How could the CRP level get brought down? What is going on? She told me I had some form of arthritis which is an auto-immune disorder for my age but it wasn’t exactly hitting every point of any diagnosis.
One of the issues that happened at the same time took place on the red carpet of the American Music Awards where I twisted my foot in heels which now I refuse to wear ever again! My pinky toe remained swollen and purple for weeks and months. The rheumatologist monitored it but she wanted it to get looked at better by a foot doctor. Both of them concluded it was dactylitis which is swollen fingers or toes kind of like sausages. They were more concerned at this point that it was a bone infection so I had a bone biopsy done. You have no idea how much you really need your pinky toe till its stitched up! It came back negative but I was prescribed medication and it slowly disappeared.
My rheumatologist then wanted to try this medication like Humira. I would get a brown bag full of benedryl, IV packs, small bottles of medication that I would have to bring into a special clinic. They put you in this small room and first give you the benedryl then start the IV. Through 20 minute increments for 3 hours, they would push medication through you with the IV. It was hard to stay awake. The first 2 times went fine but the third time, I was sweating, turning red, my temperature was boiling, and then I had a seizure. It took 4 EMTs to get me to the emergency room. I was discharged later that day.
My doctor was puzzled so the next course of action became Enbrel. You see that commercial with the guy who used to be a pro golfer but then had joint pain and couples play? Well it is that medication. It came in a either a plain syringe or an injectable so you couldn’t see the needle. I went with that one because I was nervous about giving myself shots. Enbrel was once a week and let’s just say I had a love hate relationship with it. It always left these huge site reactions on my thighs maybe as big as my entire thigh. It was raised, red, itchy and hot. The doctor had me take prednisone 30 minutes prior to injecting it and boy did that help! Prednisone of course is a steroid and my doctor didn’t want to keep me on it but she did until I started realizing my hair was thinning and I was feeling fatigued. We switched to this other shot called Simponi.
Simponi was super easy. Using it was like filling up a basketball. It was once a month and left no site reaction. It has been fine. Yet since my move to a new state and city, I was noticing I was still feeling extremely tired. Heck I am right now writing this! I switched over to a new rheumatologist in Arizona how really went in depth in my medical history and did an entire work up. I was there that day for 3 or 4 hours. Afterwards I got blood work done and x-rays. Everything came back normal for what I know but not sure about the x-rays it was all in another language to me. But during the visit, the doctor told me he thought I had Psoriatic Arthritis still an auto-immune disorder minus the Psoriasis which is skin rashes. It would explain why I had the situation with my toe and why things hurt when he touched different joints. I told him about my exhaustion. Why am I so exhausted even after I sleep 10 or 12 hours a night? That amount sounds even unreal to say but that is over the recommended amount per night. I work less hours and days then I used but constantly just overall exhausted. No amount of soda or coffee can kick the feeling. He plainly said the currently medication I am taking isn’t working anymore. It is supposed to suppress the exhaustion and other symptoms but it hasn’t. We are in the process of switching me to a new medication called Cosentyx but of course waiting on my insurance to approve it but also I am having knee surgery too that will also not allow me to walk for 6 weeks.
For a while I thought my knee pain was a dislocated patella but turns out it wasn’t that. I found out after I was standing for a few hours at a Shawn Mendes concert. I walked out and my knees were stiff like anytime other time I stand on my knees for a while like that in a tight area. As I pushed the pedal of my car in drive, it happened. This insane amount of pain. I almost pulled my car over crying. Turned out, I popped the capsule in my knee which was on its last hinge from other damage that I will admit goes back to freaking out watching (and attempting to dance) Beyonce at the Super Bowl with Bruno Mars and Coldplay a few years ago!
I am currently gearing up to get ready for all these upcoming changes. But why am I telling you all of this? Well because, this is my story and I’m sure someone else is going through it too. Also, it is because of Selena Gomez. For years, we have known she has been dealing with her auto-immune disorder, Lupus, which has caused her to get chemotherapy and most recently a kidney transplant. The fact that she continues to her share story and raise money for a cure, has made me want to share mine. My condition is a lot different than Selena’s and I haven’t had to do deal with anything on her level but it’s the idea of knowing we aren’t alone.
The whole goal of her telling her story was to help going through it too. You can look at someone and they look fine like we did with her, but we had no idea that a few months ago she was so ill that she needed a kidney transplant. You come across so many people on a daily basis and have no idea what they are dealing with. I am not ashamed of what I have because I have it and it doesn’t have me. It is a part of my daily life that I have to deal with but you wouldn’t necessarily know unless I told you.
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