Butterfly Chronicles

This is not a complaint, I repeat this is NOT a complaint.  It is real life feelings of frustration. Yesterday I received my test back from some intensive testing done at my new doctor. I had to wait 3 whole weeks..I was nervous,  excited and a few million other emotions to boot. I arrived and anxiously waited…the doctor comes in and says ” your blood work looks great, and your x rays came out great”. At that very moment I became nauseous. If I had a dime for every time I heard those words, I’d totally be wealthy. I think from there on I just blocked out everything else.  I’m not disappointed that my test turned out well, I’m sick to my stomach that no one knows what to do with my condition or symptoms. I’m tired of not having good days, or just feeling like I want to give up. I came home and quietly moved around my house until I could get around a locked door, then I sat and cried and cried. It seemed the only way to dispel all my emotions.  Now I have to start over again…

Since the outbreak of the pandemic our important occasions (graduation parties, gender reveals, and funerals) have all been held on platforms such as zoom. Are you on media fatigue? It’s been rough on me..I feel like my girls night out has turned completely virtual. Granted, I respect why it has to be this. I’ve come to understand that it’s an important time to improve on my reading, meditation, and other thing that calm me naturally. I know as a spoonie I tend to grab my remote for entertainment, however,  screen time is not good for our emotional sanity! While I love my shows, I m learning to not reach for the remote so quickly but enjoy such things as my word finds. It also cuts down on my online fatigue. I hope this proves helpful to my fellow spoonies.

If you’re not quite sure what a spoonie is please google it. It’s an amazing story behind it. This week has been a rollercoaster going down hill only. Being in a flare for an extended amount of time is draining. I m not sharing this to bring you down but to help you understand why we may not be chipper, on top of our game mentally, or up with a cup of  joe at 7am ready to start the day. Knowledge is power in this case, power in understanding we may need a little more time to do regular every day tasks. Big air hugs, well wishes, sweet text messages, and occasional calls are a great comfort. Have you hugged (socially distant that is) a spoonie lately?

So here’s the news I ve been waiting to share..   My Dr’s visit was amazing!! I was happier than I had been in years. I was asked a million questions,  and get this, they were the right questions. I wasn’t rushed and she running major test to address all my questions and concerns. My test results aren’t due for another 3 weeks, yep it’s that serious…I can’t wait though. Until next week,  stay safe!!

When I first started this blog I mentioned my journey in finding a doctor to understand my needs. I thought I found one, it seems now my needs have changed.  Having a chronic illness means your doctor has to be adaptable. I had questions that needed to have answers to. Now I have an appointment with a new doctor,  and funny as it is, I m excited. Odd how you get excited to understand what’s going on with your body. By the time I post next week I ll have my ratings for my new doctor..stay tuned.

It’s amazing how things can happen in life unexpectedly. I recently rekindled a friendship that I had lost contact with. The most interesting thing- she’s now also a spoonie. I learn so much from others as I still have so many questions. Once again I’m without a rheumatologist which is the specialist for my conditions. Thankfully I’ve been referred to a new one who has an expertise in chronic conditions. I m excited and nervous at the same time, my expectations have been dashed before, so I try not to get my hope’s up. In the meantime I wait to see where this will take me.

Since the pandemic hit I’ve had a lot if quiet time to think. Think if I contribute to my pain,  think if I ask too much of others, and even think what are my long term goals? When I started this blog it was to educate through my experiences. Now I ‘ve educated myself by putting pen to pad to really translate my feelings. As time continues to tick by I’m working hard to have great days instead of gray days. All heroes don’t wear capes, some just carry a pen in their poc9and thoughts in their heart…stay safe all!

Just when I thought I had become a scholar of chronic illness I learn new stuff. This week I learned my chronic illness cause nerve “stuff” to happen in my hand. This changes the look of my handwriting…who would have thought?? I try to do research on my condition often..but new things always pop up. It’s important to ask important questions even if to yourself..then look to try and find the answers. Now I must run and find other things to occupy my time during quarantine..

Now don’t let the title fool ya..not all snakes are poisonous. Here though I am referring to people who pose like they have a cure to our aches and pain. They thrive on our desire to strive for normality and offer us sugar water so speak to help us. I m seeing more trends on social media of this happening….My chronic warrior friends please be care who you trust with your health!! Now that has been said,  how do you feel about getting out as your states start to open? Are you going to wait it out ,or are you ready for sun and fun? Let ms know…

This post is dedicated to a dear friend and chronic illness warrior who is battling covid right now. For some of  us it isn’t real until it hits home. There has already been one loss dear to us we pray for no more but keep trucking along.  Have you found new hobbies? Are you reaching out to people more? Are you spending more family time? Everyday day is definitely different for me. I ‘m used to being at home most times, but I do miss window shopping. Remember to keep your love ones close even if it’s a video call. We are in a time where we need lots of love. Sending you plenty from here. Stay safe!