After a nomadic end to 2018 we arrived in New York on December 28. Still feeling unsettled, having a to buy all new furniture – we moved in with an air mattress, iPad, computer, two mugs, two bowls and some silverware.… First on the list, Wi-Fi – at least we could stream. January 3rd our boxes and our new furniture arrived – furniture delivery gave a window, 10 AM to 2 PM and the boxes “late morning” but on this day, they both arrive at 10:30 AM. Seriously!? What were the odds!
I am “OK“ I am “tired.“ I am beyond rundown. I have no doctors and no therapist for pain management. I miss my rolfer, my friend of 12 years. Everything hurts. Everything is slow. Tightening getting worse.
I’ve spent days on the phone with SSD, Medicare, my insurance provider. DAYS!! They lie… Sorta. They say there is no break in coverage but they don’t tell you it will be a month, so February 1, before my new, more expensive, New York insurance has me in a holding pattern. I don’t have my new, updated insurance card. I can’t schedule with doctors. And so many doctors with terrible ratings. I’m familiar with “if you are happy you don’t leave a review but my neurologist, in North Carolina, has five stars and not just from 3 people. I don’t have the energy or money to waste test driving doctors. I’m complicated.
I wrote the above in January. Exhaustion, migraine and all over pain won over. It’s mid-February and in the last two weeks I’ve started with an acupuncturist, literally out my front door and next door on the right! Ok, so that’s a start. I asked a friend, who has a friend with Acro for their doctor list. Knowing full well that he’s in North Jersey, so his specialist would most likely be in NYC. It took 2 weeks to get through the noise but I have an appointment with her in early March! Lab work next week and MRI’s have arrived… slow start but picking up quickly! I desperately need a neurologist, spine specialist and who knows what else, oh still need an orthodontist and jaw surgeon for continued care, as well. Hopefully the Endo has a team. In the mean time, the property manager of our new apartment building was faxing my medical records for me and we got to chatting. I left with a list of local doctors. One, a neurologist with good ratings and less than 2 miles away! She is also on the medical marijuana New York state registry. Not sure what this means yet but something I’m ready to try. Narcotics as a rescue med don’t always help and are getting harder and harder to fill an Rx. Illegal opioid crisis is causing problems for those who not only don’t abuse them but desperately need them.
So things are lining up and it’s a start. I’m having some trouble accepting my current state of being. But this level of exhaustion cannot be ignored.
I cannot concentrate for long so my goal is to complete my #sketchbookproject from the Brooklyn Art Library and mail it back by the end of March due date. I have time for the surface pattern design class I’m taking. Thankfully, so far, its just adding little nuggets of knowledge to my adobe illustrate abilities. It is a let down to have been so excited at the end of January, only to become a whole other level of exhausted. But it’s ok.
I’ve rallied twice to go out. Once in January for our 15th anniversary and once in February for my husbands 50th birthday. Both noble and fun reasons! The rest of the time I’m home bound but it will get better with time. Some days it needs repeating… other days I’m content when “it takes all day to get nothing done.” And then there’s everything in between.
Even though I’ve written and re-written this post several times over the past month, it’s always good to get it out of my head. Pen to paper, then computer.
Health Story Lines has a great app for journaling, doctors notes or questions, medication lists and reminders. Use my link to download the app today!
#HealthStorylines #acromegalyalum #acromegalyacademy
#acromegalywarrior #keepgoing #vivelafranceny #wegohealth #patientworthy
February 19, 2019 at 10:24 pm
It’s okay… To not be okay.
To feel “beat”…
I pray that much brighter, lighter & easier times embrace you in the days coming ahead 🌟💫
Gentle hugs 🤗🤗
February 20, 2019 at 7:32 pm
Thank you! It is ok! xo