It’s been awhile since I shared anything with where I am at in my wandering season. Complex Regional Pain Syndrome, CRPS, is something I could have finished my life and been happy to not know a thing about it. But here I am, 2 1/2 years later learning more and more.
This illness is an invisible one most of the time. It’s unpredictable. It’s also known as the suicide disease. You feel alone and the pain just gets worse and worse. I am so lucky to have some amazing people on my side that keep me on the right track.
This is where your tribe or community is a must! They look in on you and your family. Not going to say with that I don’t have moments of feeling alone. This nerve disease is totally attacks your brain. I’m just thankful I don’t stay there very long and my people pull me out.
Besides the pain….and blue/purple….and pain….and swelling…and pain… Some other symptoms that are normal for me: Overheat. Vertigo. Blood pressure races. Can’t sleep. Find the balance between doing too much and not enough (I’m still figuring this out). Head feeling full. Edema. Exhausted. Depression. Sensitivity. Muscle cramps.
I am also on Lyrica 150 – 3x a day. Cymbalta 90. Another anxiety med at bed time, compound cream. These have just as bad of side effects. I have endured, and it’s getting worse, short term memory loss, confusion, weight gain (a lot 😞), no desire to do anything, can’t feel much emotion except depression, forget simple words-can’t think of the right word to say in conversation, swelling of throat.
Homeopathic or other things that kind of help, I’m on nervalgesic (this stuff is pretty powerful), l-theanine, CBD oil (have been out of this for a while 😞), CBD bath bombs, CBD cream, Epsom salts, melatonin (20 mugs and it still doesn’t always help!).
Temperature change (cold mostly) and rain throw me into a flare. So last week when the humidity was down and it was a little cooler, I was a mess! The pain and swelling got bad. And I’m still in the flare. Most of the time anymore my foot feels like it’s breaking again. This is hard to explain to people if they don’t know anything about it.
I have the best pain dr! He has always makes me feel like this is real, this is bad. But he also makes sure I know that I can do this. I can get through. I’m young and strong. Mind set can make a big difference in the battling of CRPS. There are moments when that doesn’t work but a lot of times it does. He has had me on strong pain killers and pain patches (morphine), but he has watched the dosages as he does not want me to get addicted. He has said numerous times I have enough things to deal with, opioid addiction will not be one. I’m thankful for this. Not always in my right mind, especially when the pain gets so bad. These things do not even touch the pain anymore so I’m not really on anything right now.
Our next step, well has been since the beginning of the year, is a spinal cord stimulator (SCS). I did not want to go there and guess what, we are 😜. There is a new one out, H10, that I will be getting. I have watched many videos and many reviews on it and it sounds very promising. He feels he can get me to 80-90% pain relief. Honestly right now I would take even 10%. Again there is no cure right now, just trial and error of what takes the edge off. This new SCS you don’t feel the vibrations or anything. Which is key for me. I can’t handle any vibrations on my left leg.
I’m at the point where I’m just exhausted. I’m tired of having to cancel plans because this thing has a mind of its own. I might be ok one moment and the next I’m totally down and out. Cue the feeling along here. It’s hard when people ask how I am, which is why my usual response is doing ok. The only way you will understand it is if you go through it yourself.
Support groups are also a must! I am part of a couple on FB and they have helped me in many different ways.just something about the response me too! that makes me feel not alone. Now don’t get me wrong, my hubby and family have been amazing, it’s just they don’t always quite understand it because no one knows about it.
All this to say my #1 is my Jesus. He trumps it all. I have been asked how do you have all this and still a smile, my reply is I have Jesus. He is my pure joy. He has gotten me through some ugly times and I know there will be more ugly times ahead but I will get through it. Praying and talking to God is my key. Guys I am honest with Him. I have done the ugly stuff: argued, yelled, blamed, questioned, all of it to God. The response I get is nothing what I thought. I instantly feel warm and I can feel his strength wrap me. These are the moments I feel very powerful.
I also have times where I praise and thank Him. These moments are more the farther I go because I am learning how to deal in this disease. I honestly am to the point where the most part I’m able to thank Him for allowing my world to be turned upside down. I feel life in a different way. 2 1/2 years ago I was a bit lost. I definitely had the mind set where I can do it all, I need no help. Which meant I really didn’t need Jesus if I was totally honest. Today I can say that I definitely need help. God needed to break me in order to use me. He needed to get rid of all that was not me so I could bloom.
The beginning of 2018 I asked God to get rid of what was not mine. I wanted to be used by Him so cleanse me of anything holding me back from it. My theme song early on was Oceans by Hillsong United. “….Spirit lead me where my trust is without borders, Let me walk upon the waters, Wherever you would call me, Take me deeper than my feet could ever wander, and my faith will be made stronger, In the presence of my Savior….” https://youtu.be/dy9nwe9_xzw
God has used this wilderness wandering for good. Just like He promises, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose” Romans 8:28. Our pastor preached recently on the wandering in the wilderness. I believe that is what I have been doing the past couple years. He has used this time to prepare me. To make sure I was ready for the task He is going to give me to further the Kingdom. 2 1/2 years ago I would have for sure not been ready, today I am closer. I still am not fully sure what He has for me but I know it’s going to be amazing. I do know my story that He has written specifically for me will be part of it. I know He’s going to give me the tools to help at least one person! Maybe it will just be this blog, maybe to helps friend, or maybe am even bigger task. We will see! I just know I am ready for Him to use me.
So if you are struggling right now, if you are in your season of wandering please reach out to others to help you. I am always here as well. Even if to pray. Prayer is so powerful but I know sometimes when you are battling something, it’s hard to pray yourself. One of those amazing things a tribe brings! But honestly tears are words to His ears.
So I’m just waiting for my Dr to call with a date to get my SCS trial done. I will keep you guys updated! Thanks for following along.