Let it sink in

I was scrolling through Facebook the other day. I saw a post about this woman being strong.. I read a line or two and went on to scrolling. I’m pretty fast, some of the posts intrigued me enough to read. Usually after I scroll, I will eventually make it back to the top of the timeline to read a little more slowly. That’s when I saw it. Not the 1st time, but the 2nd. Two photos of me posted in a head to toe shot. What would seem like normal for most people who know me, this was not normal at all. Who is that woman looking back at me? Surely I can not be her. Her arms are swollen, her hips huge, her legs enormous. Ah but it is me. It is truth in the most positive image… no edits, no head shot, no distractions. Just me. The part that really hit home the most, is I don’t see myself like this. I can’t. It’s to painful to admit that I possibly could be worse than I was before I traveled to Germany to regain my life back.

Every day I wake up.. there is a process. First just the hard fact that my pain levels are already kicking in from lack of sleep merely from not ever getting comfortable. Most nights I will toss and turn, I can’t stay in one position too long, it’s very painful if I do. Then there is the next truth, that my feet will be so swollen that I have to move around and put on my socks to assist with reducing the swelling. Let’s not forget medications, oh then switch out compressions. That is work. Unless you have ever worn compressions, you will never know your own strength until you fight with these things. Then you have to sit on the bed to prepare getting clothed for your work day. Let’s also consider if you pumped your legs the night before, you’re already feeling sick, headache, tummy issues, nausea .. because that toxic fluid has to go somewhere.

You see to me, the woman in that photo is strong for sure. She is strong just like anyone else who is dealing with health issues. Some you get over, and get better. Some are a life long process, one that won’t go away. You learn to maintain it. You learn to live with it. Some days you’re angry. No matter how much support you have, there will never be a true understanding. You will cry. You will smile. You’re your very worst enemy, because you’re the most critical person. Medicine helps at times with the pain, but you become so used to pain, that you will have injured yourself and not even know it. This is fact!! I walked around on a fractured fibula and ankle for 4 weeks and didn’t even know it. Pain is a everyday occurrence.

People will look at you and think they know everything about you. They will always make assumptions. If you’re having a decent day, you may let it go. Have a terribly difficult day and you just might educate them.

When you are finished with your work day, you will silently praise yourself for making it one more day.

Disability is a future you can count on, because one day your physical therapy, MLD (manual lymphatic drainage) and other therapies won’t allow for a normal job. You will become a slave to the flexi touch pumps, the pool theraphy, the wrapping, compressions, and your mobility will lessen over time.

I’m sure you’re thinking it can’t be that bad. I promise you, it is.

Why? Let me tell you why. From the moment I started putting on weight I started dieting. Every doctor I visited told me I just needed to lose weight. I needed to exercise more. No matter how disproportionate my body was. They all fed me the same words. Eat less, exercise more, avoid this and that. If I had been properly diagnosed even 15 years ago, I would have had a better chance at keeping it from progressing to a nearly untreatable stage.

Here I am. I had this disease that was getting out of control. 20 years out of control. Too little to late. My diagnosis came at a late stage 3 , that the only thing surgery did for me was give me more time to enjoy my life before I become immobile. And that there, that word… immobile… I refuse to accept that.

Don’t get me wrong, I’m blessed. But these days get harder and harder. It’s no walk in a park. No matter how much research I do, there is no quick fix.

So my friends, my family.. strangers. Let that sink in a bit. Offer a hug. Ask how my day was. Ask if I need cry, or a shouting match.

Remember I have lived both sides of this ride called life. I was skinny, athletic, fast, happy. Now I’m slow, thankful, blessed but sad. I want to help woman like me. Support women like me, whether stage 1 or stage 3.

I want to educate others to be kind, compassionate and understanding. That is so very important. If you see someone like me, don’t be afraid to talk to them. Share my story. Get to know them. No judgement needed.

Let that sink in, your heart will be in a better place and your eyes more open.