I know every day I have is a gift from God. Words cannot express how grateful I am for my surgery in Germany, but also this recovery has been the hardest thing I've ever had to do in my life. No doubt worth it, and I get confirmation after confirmation it was the right thing to do, but how slow and long, up and down, and of course the extrinsic life factors and pressures all make this recovery so much more difficult than even my emergency c section or hysterectomy. I touched a little bit here about how easy it is to let doubt and worry take over because a) we are leading the way on this treatment option so the only real guidance is from a few others who've gone before us b) a lot of doctors have no idea about this surgery and what it entails (or EDS) to understand why it can take so long to heal, and c) most if not all of us who get the surgery have had to wait for doctor appointments, testing, imaging, diagnosis, and so we think, "Finally surgery!" and then it ends up being by far the most challenging wait we've endured.
I haven't really talked about this yet because I wasn't sure how, but those of you that helped get me to Germany by sharing, praying, and donating have helped a lot more people than just myself. It actually started before I even had surgery where people were reaching out for advice and my experience. I know I've said it multiple times, but I actually planned to take a social media and blog break as soon as I got home, but I remember how desperate I was for information that I could not do that unless I had posts to help navigate and answer those questions. I don't want to put a number on how many have gone to Germany because it's a group effort with the others who also share and had surgery, but I want my family and friends (and even strangers) that humbled my husband and I with our gofundme to know what your efforts accomplished. So many people were given hope and are on the path to healing because you helped me and now I can help them. There's also more in the works for advocacy, awareness, and major change with these compressions that I'm so excited what it means for those that Germany could never be a possibility. Hopefully I will be able to get to share about all those soon, but it's incredible to not only see it first hand, but to be a part of it. It has given me so much purpose in my suffering.
Now to the main topic I want to discuss in this post. There has been a little tug-of-war on exactly what I should say to the warriors who contact me. First question is usually how I'm doing. I have always wanted to be honest and transparent so I feel like I have a right to tell them that the recovery is like I detailed above. It's just a delicate line, right. Because on the one hand you don't want to scare them out of hope or an opportunity to improve and change their life, but on the other hand if you don't share about the tough parts they may worry that surgery failed and that it isn't normal to experience. I was so very fortunate to have someone who prepared me for what her first 6 months was like and tips that she learned. It was invaluable. When I traveled back from Germany and had my first menstruation since the surgery, I was really worried something was wrong. I knew it would take a lot out of me, but the symptoms and pain I experienced would've definitely scared me if she hadn't told me that it was normal after flying that long. She's always supported and encouraged others to go to the ER or get imaging for peace of mind if needed, but just knowing she had it too was reassurance everything was ok. I hope by sharing this it can also ease your mind if you go through surgery.
What I feel like also needs to be said is that these down times can wear on you. Full disclosure: I thought each good day I had meant this is how it would be from now on. So the reality when another down time hit was pretty rough, especially when those times lasted more than a few days. I could usually stay pretty positive and know it would eventually pass, but if it turned into more than a week or let alone a few weeks, I struggled. That's why if anyone has had surgery or is about to, I want you to find those things that will inspire and help you get through those times. I have a list that I've been working on to share some ideas. I was very fortunate to have my PT, EDS specialists, and family members with chronic illness agree how long and slow the recovery would be, which I think also really helped. I'll never forget reading a couple times that their doctor referred to an EDS patient's insides to cottage cheese. I know, not a great illustration, but it stuck with me. I think I've put this in another post before, but I reminded myself often that my body was in a bad way for a lot of years. It's going to take time for it to learn how to work correctly and heal the damage that was done, especially to my poor organs. Plus, this surgery fixed five compressions, not just one.
So if you are in it right now, remember, every down time, hard part, there's progress happening. I finally was able to see and feel that after each one. An upcoming post I hope will help inspire you that this recovery is not just healing you physically, but mentally and spiritually after all we've been through to even make it to surgery. I heard a phrase that I think is perfect. It takes 3 months to be able to get out and about, 6 months to feel like surgery was worth it, and a year to feel better than you ever have. I can't wait to share with you when I'm at the year mark.
"If you want the rainbow you gotta put with the rain."
-Dolly Parton
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