Hey! I know it's been forever since I've posted. I mostly kept thinking, let me get to feeling better and post a great update. Unfortunately I'm going on 7 months of the same pain that just keeps getting worse. I spent another day in the hospital and have had lots of doctors appointments to figure out pain management. I'm just in a slump. In the pits of the disease. Every day I wake up and my entire body hurts. Mostly my left rib cage in the front and back and my left arm. But eventually, once I start doing anything, my hips, knees, legs, and feet start to hurt as well. I've had to really cut back on activities. And no I'm not talking about things like extra curricular fun activities. More like only going to the grocery store when I think I can walk that far and lift the juice and milk off the shelf. Or planning something around when I can take a nap to make it through the day. I hate making plans ahead of time because I'm always afraid I won't feel good and will have to cancel. It's awful to think that. How I would love to plan fun things in the future without wondering how I will feel! It's so hard for some people to understand why I use a wheelchair or a cane sometimes. I don't look sick. But my insides are slowly falling apart and I am exhausted. I try to do fun things with my friends, smile for pictures...knowing they are going straight to social media. So from the outside I look fine. And I guess that's good. I don't want to look sick. But I also want everyone to understand what's happening on the inside. I could never explain it this well so watch this video of "life with ehlers-danlos" and keep the prayers coming! I am so thankful when I have good days, but I do feel slighted when I have weeks of bad days in a row. And that's where I am now.
I am so thankful for my amazing husband who rearranges the fridge shelves so I can lift things, alters anything in the house to make it easier for me, and just loves me unconditionally. And Kappy girl who is the best "therapy dog". She knows when I need to rest and naps with me any time of day! And of course my mom, who also has EDS and is in remission and is my rock. I don't know what I would do without her!
Please keep my friends Tricia and Lindsey in your prayers as they are both fighting for normalcy. Tricia with chronic illness and Lindsey with colon cancer. I love having them to lean on and talk to.
Xoxo
