There are so many times or events in our life that we travel through but cannot fully see ahead. Maybe it is because we do not want to really see. We are not ready to accept that life will never be the same again, we do not want to admit what our future really looks like.
This week on vacation, I saw truly, for the first time, that my life is different. The day at the amusement park, I was too stubborn to admit that I needed to rent an ECV (a scooter) …possibly too cheap to also spend the additional money on myself. I was firm in believing I could walk, I did not need a ride. I was wrong.
This picture right here that my husband captured shows the face of a mom giving the day her all but hurting at a level of pain most people will never, thankfully, have to experience. In 90 degree heat, my foot feels as if it’s in the middle of a large burning fire. My body feels as if it’s been run over by a semi due to the way I walk. My body is going through a million different side effects from meds and/or CRPS.
The day we ventured to the water park was extremely hard on me. We rented a luxury lounger thinking it would at least give me a little bit of relief. I had tried to enter the pool at the resort one evening and it sent my pain levels spinning out of control so I was seriously afraid of touching water.
My body temperatures are completely out of control since getting CRPS and the extreme heat or cold worsens my symptoms.
I was ready to leave my family and take the shuttle back to the resort, to my air-conditioned room. My husband convinced me to try the lazy river promising to protect my foot and walk my tube. With tears in my eyes for so many reasons, I agreed to try not wanting to separate from them.
It was circling the lazy river with him walking my tube with my foot propped high out of the water that I realized how great the fear is of causing a flare-up and never knowing what might be the line. I had moments of serious panic when kids came along having fun and splashing water. The panic of needing to be as far away from the waterfall as possible as even the mist of it hitting my foot caused more pain.
But, my body temperature was finally down a little and I was in great pain outside the lazy river or in it. However, I got to the point where I could no longer handle the moments of panic, of great fear.
The fear of a flare-up.
I struggled emotionally all week, one cannot help but feel like a burden. Constantly, they would have to stop walking and walk slower to not leave me behind. The girls really wanted to hike in the mountains, but since mom cannot, we drove the mountains. It was also beautiful, but we know the true beauty was off the path unaccessible to me.
Tomorrow morning I go in for my seven day trial of the Dorsal Root Ganglion {DRG} stimulator. I pray this works for me.
It’s my best case scenario.
I realized this week that it was time to accept that I have a life changing disease. If my stimulator works, it’s a life of procedures and a battery pack in my back and a life of tweaks on the programming of the equipment.
If this does not work, it’s a lifetime of meds that I despise. It’s a lifetime of other procedures or injections. It’s living in total fear of a flare up.
There are no more roller coaster rides or water slides for me with my daughters. My life isn’t like my life like before CRPS took over. There are no miles and miles of hiking in the mountains, my husband’s dream vacation.
I’m grieving that loss. I am. I think that’s okay. I have to accept that loss so that I can let go of what was and find comfort in my new life. My life with CRPS. I have to dream that in between procedures or meds or whatever future medical find I will discover a new K.
I sit here in the car somewhere between Tennessee and Michigan hiding behind sunglasses with tears. I’m so thankful for this vacation, it was so needed, for all of us.
Now, I prepare myself for tomorrow, for the next seven days fearful to get my hopes up but also having hope. My tears are me letting go of life before and accepting that life is different.
Until Next Time~
My vacation is always around you, your my happy
It is July 4th and I am reading your blog crying because I am right there with you right now this minute honey. All day I had the I can do it willingness or just plain stubbornness to get me through the horrible heat. Then came the parade with siren’s and loud horn’s and my day started going to crap. Every pop, bang, child screaming was like a knife slipping deeper into my skull . As the minutes/hours went by the worse louder the noises would become to bother me and increase my anxiety which caused several seziours. But I survived and said I was fine and we still went to the lake with the kids where my seziours became worse and they were forced to miss the fireworks because of mom. So yeah, life changes, you lose independence, control, your mind, maybe even some friends. But in the end you will definitely find out if you have what it takes to be on God’s team because sometimes faith is all we have!