Butterfly Chronicles

As with anything in life you have to trust your gut. It’s not gas all the time, sometime instinct is kicking in. I had a more than frank conversation with my doctor today about the things that were working and the things the things that aren’t. I explained that I really needed her to think outside the box on ideas that could help alleviate my pain and inflammation. This lead to a really opened ended great conversation. It can be scary to try to explain what you’re feeling physically and emotionally to healthy people. This convo however opened up some things I can’t wait to explore. In the meantime I m going to have a fee conversations with my instinct about being brave…😄

How many times have you quietly sat to think, what is my next move? How can I make sure I make the best choices for my health? I ponder these questions a lot as most doctors are not familiar with the symptoms we present and much less a solution. I find myself doing extensive research to take to my appointments to say hey let’s try this.. We are the PhD professionals of our bodies as we live with things that can’t be placed in words or descriptions at times. My entire goal to bring awareness to chronic illness will push forward because of such ignorance.

As I write this from my bed today, I sit in pain and frustration. It’s so irritatingly difficult to help when you suffer from chronic pain. I’ve been to a pain management center before and had to discontinue my treatment. Now I see it’s a good idea to continue treatment. I call a new center fo an appointment and I need a referral. I called two of my Drs to get a referral, no referral yet. So many people have abused the system that the honest ones who need the help have to go through several hoops to get it. While one may say ok keep trying, when you’re in pain you don’t function well. It’s wears you will to get things done down to the ground. Now I’m tired and I still must wait…staring at this emotional brick wall in my sight.

Last week I chatted a little about anxiety. I’d like to take this opportunity to discuss my friend insomnia again. In the chronic illness community when we can’t sleep and have pain we call that painsomnia. I’ve tried several alternatives that has me counting paint on the wall. Even though I ‘m still on this journey to find sleep, I realize how important quiet/down time is during the day. I personally get really jumpy when I lack sleep, so quiet time helps me to calm down and focus instead of being in overdrive. Tonight I feel like a crash is imminent because I’m so tired. That can be a fooler though, especially if your mind wants to stay up and play. Once again a good reason for quiet time before bed. I just found a new cafe jazz station and I will be drifting off to that. If anyone spot the sand man give him my number and tell him to give me a call, we need to have an all night chat. Happy resting all!!

As if anxiety wasn’t an issue before the pandemic, it’s become a balloon of a problem for some. We have to now be overly cautious about a deadly germ, be away from love ones, and away from the human touch. For those with chronic illnesses, this can cause emptier, and lonelier feelings. I’ve really benefited from balanced zoom times, WhatsApp conversations, and good old phone calls. This time has even given me the opportunity to write letters to those that live far away. Anxiety can shut down hope at times but its important to fight and let the light through. These things are temporary so all hope is not lost. Try breathing exercises,  and calming activities when you feel anxiety creeping in. There’s always that one good friend that helps you throw all cares to the wind. Hopefully they are only a phone call away. Keep brightness alive in your mind!

We all experience storms in our lives. Mine comes when my brain and body don’t agree. This causes complete stormy turmoil. The communication system (the nerves) send the wrong messages and here comes chaos. One thing I’ve learned from all of this is, sometimes it has to get crazy before it gets better. I have gone through times just like this.. While it hasn’t gotten better, it has gotten tolerable. I’ll take the opportunity to see a rainbow after a storm than to be stuck in the eye of the hurricane waiting for it to pass. Believe in the possibility that tomorrow is a better day.

Have you ever had people take advantage of semi good days as a spoonie? I woke this morning (early) and grabbed groceries for a family member, cooked dinner on the grill before the dragon heat appeared,  ANNND I washed 4 loads of laundry.  I was totally exhausted and then more was trying to be taken from. I had to immediately say NO.. I have to rest now. Then you get a look of ” see what you can do.” No, there are days I have spoonie magic and days when my spoons go completely nuts.  These chores will not be a constant thing. I ‘ll problably have to rest tomorrow to recover. Regardless of the looks or whispers from today, I m proud of everything I accomplished. Celebrate wins for sure!!

I had to address this subject even though my child is homeschooled. There is a dangerous virus looming in over 40 states and public and private schools are looking to reconvene for a new year. Those of us who have weakened immune systems and kids should be extremely concerned. For one, kids are not being tested for the virus as they as deemed to young by most testing sites. How can they possibly control such a virus when the common cold runs through schools every year? It’s a few things to keep in mind as you are approaching a new year. Take it from a homeschool mom, there a quite a few alternatives to teach your child in the safety of your home. I hope this upcoming year is a safe one for all.

Now that I’ve accepted what is…I still have to figure out a plan of action. It’s a difficult thought, on one end it’s yeah let’s try some new..on the other it’s let just stay as we are. Nothing works. These are the two thought processes I fought with over the past week in order to move forward. I appreciate all the people who let me bend their ear, it really helps to hear yourself talk it out..

As the sun rises on another so here comes a new plan. I’m nervous and scared mostly of the failure but risk are what make life go round. I know there’s no cure to my disease but to have a few days of relief would be golden.