Taking a Break Pt 3

Trying to get back to some normalcy. I’ve cancelled and delayed my own appointments to get through our upcoming week. Husband has Sacramento Heart (His heart specialist) on Monday, PT on Tuesday, Our son Kurtis’ doctor appointment is on Tuesday also, Our daughter Kharisma’s appointment is Wednesday and our son appointment at Shriner’s Children Hospital is on Thursday. Kharisma finally received 2 of her referrals, but is still waiting on the others. So we still know little. Just moving forward in the process. Still waiting for the repeat biopsies of the first.

Even though I have been on break, I’ve also been busy learning about disease I had never even heard of. That will be for another post whether or not confirmed in my own child. Just to make aware that it exists. I will raise awareness for it even if by shares of info. I am not sure if I mentioned before, but only approximately 20 are diagnosed with it each year in the U.S. that’s how rare. I feel like there is more hope if I don’t mumble its name. It could still turn out to be something else.

I have been falling out on a regular basis. (sleeping). Usual for me due to the Narcolepsy, but a symptom with it has been worsening. My eGFR did drop another 10 points, so I’m keeping my kidney’s watered. Always have a bottle or 2 of water with me.

I do have a few things I am still doing for Pain Awareness Month, a couple of shares really, but important for those people. I won’t be cancelling those.

My time on Social Media may continue to be limited, may stay more in the background. You know I’ll pop on to share music and listen to my friends though too from time to time.

Next weekend my Grandson will start learning more about CRPS/RSD beyond me. Text learning, reading, photos, video’s etc. His mom (Kharisma) encouraged me to start him on the reading now. De’Mantai is 8 now. After 10 straight honor rolls, he’s ready!

On the brighter side my baby girl, 12 mo and 4 days younger than her sister just bought her first home with her other half. And that’s really something to smile about. Both were in the Army she was never deployed due to an injury, honorable discharge, he did 2 tours.  Was so proud to see my daughter graduate boot-camp and AIT, but am also so glad she never went to Afghanistan. So happy for them, they move in next month.

Still hoping the bone in my leg doesn’t snap, not a lot docs can do anymore. I have a 4 prong cane, 4 or 5 traditional, a walking stick, a walker with a seat and breaks, the wheels (wheelchair), but I rather stay inside than go out and use them. Doesn’t really make sense, I know. My tail bone keep clicking, dislocating, popping back into place, or close to it randomly. I’ll get this figured out when I can. The situation with my arm buzzing and the feeling of stimulation in it eased with a click of my spine which was about 2 weeks after my SCS battery replacement, by the 3rd week gone. So I’m good again there.That was so weird!  I haven’t gone back to Neurologist yet for the full results of EMG.

All I know is I’m 14 years into my CRPS and related issues and I’ll still have it tomorrow, so putting my appointments on hold for my family is no worries.

Went to bed last night at about 10:00 p.m. Woke up about 3:45 a.m and made coffee. When I stood in front of the pot to do my usual which is snatch the strong brew out before it completes making, I breathed in the aroma.

I closed my eyes and smiled to myself. It’s a brand new day!




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