It seems these thoughts do not want to be shared, but maybe third time is a charm. I initially wrote a very raw, unedited post the other day & deleted it from WordPress. It remains on Steemit since there is no delete option, but my wish was to have it removed and explained in a better way.
So last night, I spent a good 2 hours on an awesome post in my opinion and was waiting to upload it in the morning, a fresh start for February. Saved it as a draft and off to bed I went.
This morning I woke up and it was completely erased, my draft was blank except the title. Which will remain the same.
So I'm back at square one. I think these thoughts need to be released, I am convinced there is a lesson for someone in it.
I have had what I call 'a funky' week. I have felt very overwhelmed and emotional, physically defective and defeated. I have felt hopeless and have been trying to shake it or find reason for it.
It seems my new symptoms in my neck and shoulder are staying around for a bit. Like I mentioned before, it feels like little cuts are covering my neck and shoulder on the right side. My hair and shirt feel like their cutting through my skin. I am having problems wearing even a loose strap on my shoulder/collarbone. I dress in fat clothes now that it's winter. I can wear layers under my pants and I can't wear a strap on my shoulder so it's always a hoodie. I feel like a tom boy and my self esteem is at an all time low. I used to be a model.
To be honest, it pisses me off and makes me worry about what lies ahead.
I have read that some believe CRPS to be a progressive neurological chronic pain condition. Which means, it makes sense that I feel worse and I am going to continue getting worse. More than likely anyways. It seems that way for a lot of patients.
I have such hope for a change in awareness and medical support when it comes to CRPS, but waiting since August for a doctor to treat me is becoming too much of a weight to bear.
I need change now.
I was doing well at work with my attendance until last week while being introduced to the invisible cuts on my neck. This week I missed Monday from pain and I left early today. I was ready to push today, but while waiting 50 minutes for tech issues once first arriving, I nearly bit a hole in my good hand trying to trick my brain with real pain since my breathing exercises weren't cutting the trick.
Sounds morbid, I wasn't trying to hurt myself, but trick. When you have CRPS you deal with 42 of 50 pain all the time. Add in a noisy, vibrational, bright environment with mental stresses while it's -20 outside -- your nerves are gonna freak out on you.
So I'm a little defeated with my accomplishment I was making with attendance and that was something I was really proud of.
I have been working hard and focusing on the goal of a support group in my area for CRPS. I know how alone it feels having this disorder and I always want to help others. But even my CRPS network has had it's impact on me lately.
Team Tatum is moving away :( Those who know what I am referring to, I love you. Team Tatum is an amazing family that I was able to connect with over the summer through the first annual Walk to Conquer CRPS. We all walked for Tatum that day. I hope to forever stay connected with them and hopefully see them before they go.
My dear friend will remain nameless out of respect, but is going through another incredibly challenging medical hurdle in addition to CRPS. I am so hopeful for speedy treatment and happy healing so we can create a 'tsunami in the CRPS world'. He has been my motivation and inspiration since the day we first connected and will forever be a best friend of mine.
My mental state has been challenging lately, due to natural chemical imbalances and everything I have mentioned above. There is a lot going on in my personal life that is stressful, but that remains personal (trust me, you're better off without that stuff).
I have been trying to be kind to myself. This has been the biggest challenge lately because of everything going on, but I try often. The little things will add up. It is the daily reminders and practices that will create our future abilities and limits.
On positive notes:
That pathway I have to take on the way to work that gives me nightmares about is finally being maintained! Salted and plowed a few hours after every storm! It took 2 years of me complaining, but hey hey hey... positive :)
Also, I have an appointment at a chronic care service place February 14th. I don't believe they offer treatment, but they offer support and resources for patients with fibromyalgia and stuff. I will learn more about this place before my appointment, but it's sounding like a positive.
It has been a couple of dark and defeating days for me. Everything has felt impossible.
But, thanks to Audrey Hepburn we can remember that "Nothing is impossible. The word itself says I'm possible".
Be kind to your mind and be kind to one another. If you can't do one thing with your minute, find something you can do and focus on the positives. Don't let your limits define you.
Have a great weekend and do wonderful things!
Positive thoughts,
-Kristen Sparkle (the sparkle days will come back and I will explain the name next time). <3
