I’m pissed. I’m more than pissed. I’m disappointed, angry, and most of all have a feeling of betrayal. Who knew the source of this would be myself. Physically myself. My body is absolutely the opposite of what I had in mind.
2 years ago, when my birth Mom died, I began having red blood spots on my legs, and swelling bad in my ankles. I had so many eye problems, and just couldn’t quite catch up to be energized. No one could figure out what it was. I got married later that year, and it got much worse throughout that process, and the reception was so much fun-but caused HUGE swelling. Finally I went in to the ER, it was so painful and swollen I couldn’t walk well. 3 Dr.’s later the amazing Rheumatologist I have now knew right after she reviewed the tests she ordered. Sjogren’s (Pronounced Showgrins) Syndrome. The severe dryness was causing my eyes so many problems, and doing anything like standing or walking for long periods of time caused my Vasculitis that accompanied it. Finally. A diagnosis. I had a name for what I was feeling.
Medication was attempted. It messed with my liver too much. Onto the next medication. Too expensive. Then the next one- First low dose was fine, but then the increased advised amount made me feel like the world was moving and I was standing still-not in a good way. Nope. Done. I quit taking it last year and began monitoring my symptoms and adjusting my life accordingly.
This year my morning yoga started. 5:30am on week days and 6:30am on weekends. Yoga, tea/coffee, writing. Just taking it in. Music, shower, whatever I am pulled to that morning. It’s my time to do what I want and take in the moments before life gets busy. As a whole family we are eating healthier, and really taking the time with each other-limiting TV other than using it to listen to music. Weekends are different, the kids get the morning with the TV, but then we turn it off and do something together. This has helped. I feel the best I’ve ever felt. Able to clean the house without sitting out in pain for days after. I can enjoy a glass of wine without dreading waking up with swelling. It has been amazing. Aside from my eye trouble, I have really felt amazing inside and out.
Going into my labs and appointment, I was feeling so good. I could tell them I was doing it without medication and rocking it all out! I was so happy to have my husband there to have a good appointment filled with positive things I was able to finally do after almost 3 years. He could meet my Dr. and be involved at a positive point in this mess of a body.
Unfortunately that thought in my head of how it was going to go was quickly washed away. I was quick to show her my legs were great, even after walking for a few hours around the hospital and clinic buildings. She validated that it was really good. She advised to keep doing the yoga if it is working for me. Then the lab results came on the screen. She got in her serious tone, and explained my markers this time around are higher. Instead of testing positive for just one SS marker, I have positive in both now. My organs are still ok-which is a blessing that I haven’t had any trouble with them. In one number the normal higher end of things for women is 21 and I am at a 49. White cell count is low. Everything on the screen is showing things I don’t physically feel. And because of that I am forced to accept medication as an option. Something I have fought and fought and fought. Because I trust my Dr., I am going to take it, and I am going to follow her instructions and see her every 6 months, and do eye exams regularly to make sure that side effect isn’t showing it’s ugly self.
I do it for my kids, my husband, and myself. I don’t want this condition to spread into something as worse as it can be. But I am pissed. This body I have chosen as a soul is failing me. In my mind, it should be doing what I wish-it is mine after all. I should be able to do what I want, and create what I want with it.
Do you hear that? The possession in my thoughts? This body is mine. It should be how I want it to be. It took me writing this to realize this tantrum I’m throwing really isn’t even mine to throw. For some reason I get myself all worked up. I get angry. I react in such a negative way that it helps no one. The day after the appointment, I ate greasy food, junk snacks, and skipped yoga. Take that body. You trickster. You deceiver. Take. That. Did it really do anything? No. Did it feel good? I won’t lie, of course it did. I am angry and feeling deceived and betrayed in the most personal way.
I have always been told “you are so skinny. You’re so lucky.” Am I though? Really? On the outside sure, I look really good. Yep, no rolls, and that “model” appeal. But guess what, I can barely carry my kids, I can’t walk more than 2 flights of stairs-seriously I can’t, I will be breathing as heavy as a smoker running a marathon. On just two flights of stairs. “Your stomach is so flat.” yep. You’re right, and for medication purposes it’s great because my weight holds back all recommended doses. In some cases I have to be treated as a child. That is not what you should strive for. “You must get carded all the time. You’ll love that later in life.” How about those looks I get when I have my 6 year old and 3 year old? The “She must not be older than 16.” and the judgmental stares as I walk by. The anticipation of me living “off the state.” Oh it happens. Every. Fucking. Day. Sure, my body is what most people strive for, I’m not vain in any way, I’m acknowledging the outside looks great.
Now factor in the shit it has put me through. Having to pause to clean the damn house because it hurts too much. Having to sit down at a park with my kids because if I don’t I will walk with so much pain I will hold back tears. Having to tell my kids they can’t be on Mommy’s lap because it hurts too much. Not being able to wear shorts in the summer, because #1 the heat will cause a flare up, or #2 I already have spots and swelling and I look like I have a contagious rash all over my legs the color of blood. The baby I lost because my body betrayed me. The countless phantom spasms of pain in each joint every day. Nothing is ever the same. I feel trapped. I am stuck in this body with everything wrong with it. And a “no returns” policy. Does this body look great to you now?
It’s funny. This is why I started writing. As I write all these words and stare at them, I realize how silly I am. I am validated in how I feel, yes. But alas, I know in my soul that this is the whole point. The complaining. The tantrums. The whining. This is the whole point and I need to accept and release this. I am not “worse off” or “better off” than anyone. I am me. I chose this life long before I was born, and I did it for a reason. I keep “learning” to be ok when things don’t go my way-yet here I am again. Hahaha. Oh life. Once again, you are right. I love it.
This is exactly why I started this blog. It is perfectly normal to sit and be angry about what is happening. There is nothing wrong in that. There is no wrong in taking some time to really listen to your feelings. Don’t you let anyone- including your own damn self- tell you that you don’t have it as bad, so be thankful. That’s only true to a point. It doesn’t matter how worse or better off you are-you are allowed to take some time to be upset about it. Then, write it down as I did, or just simply sit in your own moments and really listen to your thoughts, and it will come to you. Whether it’s a recurring lesson as I just had, or it’s a new one you need to explore-listen to yourself.
That’s the problem today. People don’t allow others to really feel. There is absolutely nothing wrong with crying over spilled milk. As long as you get to a point and truly accept and release those. You don’t need to live in anger and sadness. You just need to feel it, understand it, and let it go. That’s for every emotion-happiness included. You need to live in moments, but not like the cliché, I mean really live in the moments. It’s a freeing experience to have when you can just take a breath in and understand every surrounding you’re in. Just taking it in and seeing all the details without dissecting every reason of why it should/shouldn’t be.
Remember to allow yourself to feel. From rage to bliss you feel it, live it, and accept it. Once you do that the release comes easy, and your moments grow in numbers. It will be an amazing experience I promise. That urge inside of you to feel an emotion whether it’s strong or subtle, listen to it. Lock yourself in a room and just scream and cry. Or burst into laughter and smiles at a random moment. No matter when or where you need to do it-do it. I’m sending so much love and good vibes to you all. Receive them and really feel. Love to all.