Butterfly Chronicles

It’s that time again…the frigid air starts to come in and you feel that familiar ache in your bones, that stretch in your joints, and burning in your muscles. It must be winter, wow yay… We as chronic warriors don’t enjoy this season much as it brings extra pain and suffering. I know for myself I tend to have more flares in this season than any other. It doesn’t mean that I don’t enjoy seeing snow or making a snow man, I just prefer to stay close to my warmest blanket and my heating pad. This season buy something warm for your favorite chronic illness warrior. Not only will it be beneficial but it will cheer them up everytime they see it. Every little showing of love counts!

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This past week has been a nightmare maze. From an ER visit to a Urgent Care visit shortly to follow. It all started with a painful flare that wouldn’t give. After some very strong meds in the ER, I begin to wonder why I wasn’t feeling any better physically. I looked at my labs from the ER…a UTI..nasty bugger. I made a visit to Urgent Care and received antibiotics. It’s over right….nope. After two days I was feeling worst than ever. Oh right..the meds aren’t working. Now that those meds are replaced I’m finally on a path to my kind of normality. Thus has been exhausting to say the least so I’m going to continue my rest. Big soft hugs to all!!

As i start to type with watery eyes, no not from crying but because they get weak when I m in a flare, I think about comfort. Do you have that shirt, or pair of pants that you always wear because it’s loose enough to let your body breathe. My chronic warriors know just what I mean, at times our bodies are so inflamed that anything touching our skin is painful. We specifically look for things(not jammies) that wear comfortable. It’s hard enough to seem normal when having a bad day, you don’t want to look scary if it can be helped. Today I had no choice but my favorite jammies as everything feels like it’s on fire. It’s giving me just enough comfort to rest but enough love to know it’s there. That’s real comfort. ….

Have you lacked motivation to start your day and wondered why? That’s been my experience this last week. We gained an hour of time a few days ago so I was really excited. Instead of being more energized I ve been exhausted… What gives right? I check my mental state, that seemed to be in tact. Ahhh but there it was, this nagging pain I’ve been enduring, a new pain. This clearly could have taken my motivation away. This could also be the reason for my lack of energy. Not sure what the next move is but at least I’ve identified my roadblock. Clearly, dealing with a new pain is a process. I have to handle this my way in order to navigate this successfully. I going to fight the procrastination I m feeling and deal with this new alien called IBS, welcome to my shoddy body. Make yourself at home.

I don’t want to sound like a broken record bit thos past week has felt like war on my body, to the extent that my mom thought I needed a shrink because I couldn’t move. Where I live we have a major hurricane coming our way. Of course this changes the barometric pressure and causes true to life pain and misery. Even though temporary it feels like it lasts a lifetime because in our minds we have a lot to do. Even in the struggle I m looking for positivity, that’s the only thing that prevents me from throwing in the towel. Goodness knows, I sure have waved the white flag lately, begging for mercy. These are not complaints or signs of weakness, this is the reality of the life I live. I m learning to love myself all over again despite what my body puts me through. Imagine living in a body you don’t know but you’re stuck with it. You dress up the scars and keep pushing forward.

I love this encouraging picture letter my dear friend Suzanne sent me. It really helped me to push through the day. I missed posting last week, as you know chronic illness is so unpredictable. I was having new stomach issues that haven’t quite been defined. On we push toward the firing of my new rheumatologist. Yes, the search is on again. As I was in the middle of a flare I called and asked for meds I take during a flare . I was told she doesn’t use this med to treat my condition. I always talk about how important it is to listen to the patient. With that being said, time to move on for better care. I did have a very exciting appointment to create a life schedule for me. I m so excited for this as it puts my life to structure. I hope this week brings better things!

The roller coaster called life has definitely taken a toll on my body lately. Have you noticed that painsomnia ( the inability to sleep due to pain) causes a series of domino effects on your body. You are more emotional, your brain fogs increase, and your body feels beat up as it has been unable to restore itself. This domino effect can last through a long period until your body makes you stop. Difficult to explain to others but very real to experience. My schedule has been 0acked lately and I’m having to learn the true value of “no”. We tend to push ourselves to feign normality. The truth is we are NOT normal. The sooner we force ourselves to understand the better we can manage our self care time. Remember extra care is always ok, especially when it promotes mental clarity.

A whirlwind week is the best way to describe my past few days. I received a SI injection on Monday, the recovery for that has been interesting to say the least. I’ve been placed in physical therapy for a few weeks, and honestly I m not all that positive about it but I will press on. Now on the subject at hand, in sitting in store parking lots recently I’ve noticed the disrespect placed on handicap parking. People ignore the signage and park like it’s a normal spot, or they are clearly driving someone’s car whom the sticker belongs to. This leaves truly handicapped people circling crowded parking lots for several minutes hoping to score a close space. When I m having a good day I will sacrifice my space for someone who needs it more. Please be courteous. ..if you don’t have a sticker don’t park there. It’s also illegal… The fact remains it’s always important to be kind.

This past week has been a total whirlwind. I started some new therapy and if course my body is in tantrum mode. Most spoonies will tell you that they run out of spoons before they get their day started. Borrowing a spoon for me right now is just the drive to keep pushing through. With all the negative going on right now, sometimes you have to shut everything out and place yourself in your favorite setting and say ” Let’s take on the day” ! While exercise and therapy might be good for our bodies it’s clearly not enough to solve the difficult puzzle that we are. Despite, don’t be to try new things, clearly we have to that at times to prove the naysayers wrong!

I’ve learned that each season brings it’s own challenges. I used to be so excited for summer. Extra heat can cause body aches, how about that? It’s popular thought that cold penetrates to the bone and muscles which is true..but other seasons such as fall, bring challenges such as allergies that set off flares of all kinds. It’s a trigger most don’t see coming. I’ve had to learn to be adaptable no matter the season and be prepared for the unexpected. This is what makes chronic illness a true journey the ups and downs of the road traveled.