I've had two days of orientation and two full days of rehab so I figured it was time for an update! I know many of you have asked how I am doing and what I am up to, so this is the best way to update everyone all at once. And for those of you thus far that have sent me encouraging texts, I really appreciate it!! Getting them breaks up my day a little bit, so keep them coming!
Weather wise it is basically like a vacation here! I keep getting texts from friends and family saying it's 104-105 at home, and here this morning it was a chilly 67! I am definitely getting teased for being cold by all the residents here who think this is summer weather, but it really does feel great!! And the scenery and landscaping here is just so beautiful, everything is green!! Which is quite a change from the yellow-brown grass back in dry Texas. And as I type this it's raining outside, which is something I haven't seen in quite a while! It did come unexpectedly and is causing plan changes, but it is a welcome sight :)
Well, I guess the biggest piece of news and the best to start with is.....after almost 24 years I am finally completely diagnosed! It is a big shocker, so even I don't really know how to feel about it as of yet. But it turns out I do NOT have muscular dystrophy. Yeah. Drink that in. It's really crazy to think your whole life you have one condition, so much that it in a way becomes part of your identity, and then one day you wake up and that's not true anymore. I won't go into extreme detail on here, but if you want the details please feel free to text or message me, and we can talk :) But essentially it seems that my birth mother had an infection while she was pregnant with me and never got treated for it, and because of that I have all these problems. It's been an emotional rollercoaster for sure, especially since the infection she had is one that is routinely checked and would have been a super easy fix, but she did not seek prenatal care, though she reported that she did. The neuromuscular component very much mirrors MD and the tests they did for that diagnosis did show muscle and nerve damage, so they just assumed MD, especially given the rarity of this infection ever having permanent side effects.
So what does that mean in terms of treatment? Pretty much the same as before. There is no cure or treatment, it will just be managing symptoms as they come along. But the silver lining, which is truly an answered prayers and alleviates so many of my fears. is that it is NOT progressive. The damage that is done is permanent and irreversible, but as far as muscles and nerves go it will not get any worse. What a load off!! I'm still processing how that is going to change how I look at the future and what numerous doors this now opens, but it's definitely a huge thing to be grateful for. The chronic pain is still unable to be explained, but it is now basically known that I will have it for the rest of my life, so treatment has now gone from a "Why is this happening, and how can we stop it?" to a "Okay you have this pain, how can we manage it?". Which is exactly what this rehab program is teaching me. It is such a comfort to be around so many others who are walking the same path I am and dealing with chronic pain and exhaustion. We all truly understand what it feels like and can help each other in a way no one else can. And the staff is incredible! Everyone is super nice. Again, there's a lot to explain and I don't really want to write a novel, so if you have specific questions or want to know more about it just message or text me :) But basically I have group therapy sessions where we tackle specific topics like The Science of Pain, Addiction, Spirituality, Fear, Anxiety, Planning....etc etc. And we have physical therapy and occupational therapy everyday, so they keep us moving for sure!! And at the end of the day we end with something relaxing, whether that be simply coloring (super legit), or Tai Chi, or something along those lines. I'm already learning a lot about how to change my pattern of thinking so that I can control my life and make my own decisions, instead of my pain deciding that for me. And I'm learning distractions and tools that I can use in those really bad days to focus on something other than the pain. I definitely have a ton to learn still, and I feel so hopeful about this program. Almost everyday we get to hear stories from people that have completed the program and how much better they feel and how much happier they are about life, and that they are completely different people from the pain-focused ones they were when they came in.
Everything in my life feels like it is changing right now, and I'm completely out of control of it all...but God is. He absolutely paved the way so that I could be in this program before school started, and He paved the way for me to meet with my doctor before it all started to get the answers I needed to get the most out of everything I'm learning. I may not understand the "why" of my life (but really, who does?) right now, but He absolutely has everything planned out for me and I can't wait to discover all the greatness He has in store for me.
Thank you again to all of your for the prayers and sweet encouragement. It really helps more than you realize. I couldn't do this as successfully as I am without the incredible support system that you are a part of, and I am forever grateful for that.
