Thoughts run through my mind but my head is too cloudy to remember… thinking over the month of May… Did it go fast or slow? Have I accomplished anything? Have I made any decisions? Progress with health? 

Static. All I can hear is static. I’ll give my mind a minute…

My mom came to visit the beginning of May. She even did her old job of accompany me to a doctors appointment. ( just about every month for 7 years she drove me 3.5 hours to UNC hospitals in Chapel Hill, NC). This day was for the nerve block of my SI joint. Needles have been stuck in many a muscle and joint in my body but nothing hurt quite like my SI joint. Where the most arthritis is? Not really sure. The pain was fleeting and the doctor said 14 days to feel relief. I know it takes a few days for the steroid to break down but TWO WEEKS! I think I had a little relief with the numbing agent that’s mixed with the steroid. My Mom was here so I just kept going. Shopping, dinner out, Mother’s Day with family.

The pain was simply building. 

It’s been a long month as I sit here thinking on it. The pain has been murderous. It is excruciating and I am unable to move much of each day. I started painting right after my mom went home. Guest room/studio was now available. It’s been a rough start with stiff arms and hands. Somedays are better than others so I wait for the right day. It’s hard to stand at the easel and lean in just ever so slightly. Standing up straight sends nerves into overdrive. It’s also hard to sit and work on watercolors. It’s hard to walk very far. I can’t stand, I can’t sit and I definitely can’t get up.

I called the pain specialist and was given an appointment for two days later. So grateful! I pulled up the medical notes I have already given to this office. I know he read them originally because he knew my SI joint was the newest issue but the hip specialist said it’s just a little arthritis there’s nothing to do. His reply was that x-rays do not show the extent of the issue. He only focused on that and I hoped that since this was a new injection for me it would make all the difference. I did not push about the other sites even though it was a small nagging question but now I was going to handle it differently. I copied and pasted the previous procedures into my notes on my phone… the exact places I was having injections in NYC a year and a half ago before moving to Rochester…. and not finding anyone willing to help me for that year and a half even though they had the same information as below and then some.

Prior Pain Procedures: 

6/2/20 Left-sided QL block as well as T9 intercostal block 

6/18/20 Bilateral Occipital and auriculotemporal nerve blocks performed under ultrasound guidance. Supratrochlear, Supraorbital nerve blocks performed bilaterally. 

9/10/20 Bilateral occipital nerve blocks, TPI bilateral trapezius, levator scapulae 

9/24/2020. Left T9 paravertebral nerve block, right erector spinae block and bilateral quadratus lumborum block 

I asked him the question and held up my phone. He read my phone, dictated his notes and had me tell him how and when the pain is at it’s worst. He pressed all the right places and said I could be a boxer and dodge every punch. (I do like that he has a sense of humor, makes jokes and sing songs all while being a fantastic practitioner). It was more like one of those little collapsible dolls where you push the button and they bend and flex. Supposedly he is doing all four places (8 injections) left and right, top to bottom. Hallelujah! Oh wait, hold the jubilation. Three weeks out for insurance to approve. Ugh! So the pain just continues on and I will have to manage and pray that insurance approval come sooner than three weeks and my appointment is moved up. Oh, the things I could do if I wasn’t in so much pain. I will simply keep going and pushing to the extent I can manage. 

People in pain who don’t want to move their bodies are doing themselves a disservice (everything being relative). Clearly somedays it is not a good idea but I will keep moving as best I can. I will take 3k steps as many days a week as possible. This past week it was four days and two of those days it was 4 to 5k steps. This was not intended, especially the 5k+ but I can do it sometimes. Afterward, I literally cannot move, maybe not until the evening but the morning is tough. Two days in a row and I typically need a rest day or more. This is not what I want from my life but I’m going to work with what I have.

I started a 12 day watercolor challenge. Sitting at the desk is causing crippling pain throughout my body. I can sit for hours, which I shouldn’t do, I should take breaks but I love to draw and paint. I lose track of time. When I stand I know the rest of the day will be spent reclining (the only position that is manageable). I enjoyed the first few prompts but I’ve decided not to continue. There are so many things besides the other prompts that I’m not enjoying (but it does included some lame prompts) about this challenge including social media in general. It’s always better to follow my creativity and that is to my easel! 

I also made a last-minute decision to try an artisan fair, was accepted and now have to plan for art, inventory, displays, pricing, accepting credit cards… Lots of decisions to make but pleased I made the decision.

Rounding out the month with an hour and a half drive to LabCorp. Rochester is one weird bubble of socialist madness. LabCorp is not part of their socialist regime and therefore not aloud. So we drive. 18 vials of blood drawn and two tests I’ve never heard. Upon looking them up, they seem to be newer tests for inflammation\auto immune markers. Doctors suspects… I’m going to rephrase… Good doctors take the time with me and suspect something is to be found. It’s just how to find it that eludes them. We keep trying.

We drove the additional 20 minutes to Syracuse. We had planned for part of the weekend at the nearby finger lake but it was all rain. We had a few good meals, went to a movie but my main goal was to see the relic of Saint Bernadette. I’ve always had a longing to go to Lourdes, France. I want to submerge in it’s healing waters. A hope. A wish. A prayer. Wishing seems odd because it’s faith and a prayer. Faith and reverence are so lost in this indulgent, self-serving, ignorant culture. To be in a place of believers, with hushed whispers while waiting to take our turn in front of Saint Bernadette brings me peace. Right now my mind needs peace. My body needs peace. So I’m going to hang onto faith… and the peace it brings. 

After writing this piece and dictating it into my notes on Memorial Day, we head to Lake Ontario. Where we walked in shin high water giving some resistance training. The water was barely 50° and painfully numbing. You get use to it. We waded out deeper and I did over a minute underwater from my neck down to stop inflammation. Although I know people are crazy about their ice baths these days it is nothing new. The hot/cold shower (filtered water only) is another great way to get these benefits. I do need to be careful because of my small fiber neuropathy SFN. I can damage the nerves even further simply because I cannot feel everything. My ankles hurt to the bone in the cold water but my legs feel nothing. I see so many people jumping on the bandwagon but no warnings. All my chronically ill friends should check with their doctors on this one. Why would we make something worse!

Live your best life in whatever circumstances you find yourself in and find joy. Keep going.