I AM A nonsmoker~

It is long passed time, I’ve tried many times, but I need to commit, I am committing, this time I will succeed! 

I am a nonsmoker! (I’ve heard talking about it as if it were true helps it become true.) 

I’ve tried patches and gums, herbs and tapping, hypnosis, and the list goes on and on! My excuse as a Spoonie was “it’s the only thing in my life I have control over.” So while that statement is still true, I will eliminate this nasty and bad for my health habit, replacing it with a positive healthy habit like meditating! 

I’ve needed to make this change for so long, and with my already multiple chronicnesses you would think I would have done it sooner, especially since most of my ailments are made worse by smoking. 

Somehow it fell out of my mouth earlier that hubby and I quit together- TOMMOROW!!!!! 

I know this is controversial, but I will be using a vape to quit! Maybe trading one bad for another, but I am going to do it. 

Send me some success vibes! 💕💕💕🕯


I had a doctors appointment today~ 

Yep, that 8 hour drive to and from (we are a few hours away from home still,) to see the doctor that has done so much good! 

I do have concerns, he doesn’t seem to be on track with me like he used to, I have to remind him of Diagnosis’ that he diagnosed, he down plays Addisons, and numerous other oddities! The down play of Addisons has me worried; he told me that people on their medication will NOt have an Addison Crisis (VERY INTRUE!!!) he also feels that replacing Hydrocortisone with Fludrocortisone to treat my POTS & Addisons is perfectly safe (VERY UNTRUE!!!) The two should be taken together, and Hydrocortisone should NOT be stopped suddenly!!! 

Picture is not my work- I cannot remember where I got it. Apologies to whomever.

Aside from that, when we spoke about the Fibro fog, for which he already has me on a coupled medications for, he asked if I’ve ever been diagnosed ADD, I said No, yet that seemed to be the theme for the appointment. I gave an example of stoplights as an example, that I had a hard time relaying the messages from my brain, stopping for red- I know it’s red, I know to stop, but getting the action to happen has a delay. So he says “So you just aren’t paying attention?” Say what? That is nowhere near what I just said!!! 

So anyway… I’m pouting and mad! I am trying the Adderall, maybe it will work, that would be awesome if it did. It just makes me mad that he is no longer listening to me! 

He also mentioned repeatedly of sending me to Mayo Clinic- and that terrifies me! But it may be where I end up! 

Today’s appointment wasn’t bad, I got NO NEW DIAGNOSIS’ but the appointment just made me feel… something isn’t right. 

A little at a time~

Anyone with chronic illness knows that life changes, some things are sudden changes, some changes happen a little at a time. 

This particular change has been one talked about a lot lately, disappearance. We talk of how our friends disappear! Unless they are naturally caregiver types, chances are that the chronic-ness that is now us is more than they know what to do with. 

But it isn’t just them, we disappear too! 

At first our friends and family are all there, but as time goes on there is less and less interaction. After a while we start to fade into the shadows because, for me anyway, it’s easier to fade away than to be left behind. 

I hate the things my husband has missed out on due to my lack of ability to do stuff! I’ve sat more than once begging him to move on, to go have a life that was fully active and Happy. He’s refused! 

But lately I am seeing more and more of the ease that is becoming me fading into the shadows! I tell him to go on with out me, and he does! Him going without me doesn’t bother me, I understand he needs a life, but at the same time we are fading into the shadows! 

I want to cry because this illness is what keeps me down, but crying will help nothing. I want to hate myself and scream till the old me comes back, but again, that will help nothing! 

Little by little I fade. I fade into the shadows. 

Kind words can save a life~

Attention seeker, drama queen, pity party- yep I’ve been referred to as all of them. If you’ve ever read a social media post of mine you might think the same thing, so let me break it down for you. 

Chronic illnesses suck!!! They suck the life out of me! They suck the strength, the happiness, the peace, the joy of living right out of me!!! 

Yes, I get depressed! Really depressed!!! I wake up every single day to pain most people would go to the ER over, I wake up to handfuls of medications that keep me alive and help to manage symptoms, I wake everyday to limited mobility, I wake every day to limited cognitive functions, I wake everyday knowing that I will not ever get better! I wake everyday knowing that I will feel like this every day for the rest of my life!!! That is a HEAVY weight to pack around, sometimes I get tired of packing it, sometimes I want to throw it down, be done! Do you know what saves me?

Kind words from someone! That is what saves me! Understanding, kindness, a moment of time- is what saves me– not judgemental, accusational, demeaning or belittling remarks! 

My social media posts look like a roller coaster of emotion, yes I know that, but did you know I cannot help it? Do you think I like to feel the way I feel when I post those negative posts? I don’t. Sometimes those posts are venting, just blowing steam. But sometimes those posts are a cry for help! How hard would it be to leave a little comment? “(Hugs)” or “💜” or something more engaging “Hey I see your having a rough day, hope it gets better.” But instead, most people judge and scroll right past! 

What happens if one day you are in my shoes, would you want someone to care then? Would you want someone to just scroll by like you don’t matter? Believe me, people never think they will be in this position- we don’t choose it! 

To those who do stop, take the time, and share some kindness and compassion; we thank you, with all of our hearts! You may never know the extent of how deeply your kindness touched us! You may have saved our life! You many not ever know you saved our life, because to you, being kind is the right thing to do and it didn’t take much effort on your part- but to me it meant the world, to my family it meant my life! Thank you! 

During my dark day the other day, a conversation that started about cake is what saved me! Cake! I had posted in a group and on my personal page and the conversation that followed is what kept me hanging on. Cake! 

Next time you see someone’s “dramatic” “attention seeking” “pity party” post, respond with some kindness, compassion, maybe even patience because you never know what that post is really crying out for. 

Thank you for taking the time to read this. And thank you for talking about cake! 🎂 

Planning ahead~

I’m not sure why I have not learned to do this~

How do you know when to refill your prescriptions & order new supplements? 

Do you want to know how I’ve been doing it? Do you want to know the way not to do it?  I refill my pill organizer once a week! When I refill it I will watch for what will be low or empty next week, then I set the bottle aside and call it in later! Or in the case of supplements I place the order later. Later! I forget! I forget a lot! And forgetting got me into trouble yesterday! Yes I lived through it, but I did not want to. 

So today I have sat down with all of my medications and supplements and wrote in my planner Reminders, BIG REMINDERS, of when to re-order! No more of the old way, it obviously was not working. 

Later today I am going to make up reusable cards with each medication & supplement, I will hole punch them and they will be placed with the day the refill is due. Making life easier! Right? I hope. 

Do you have tips and tricks for medication organization and refill reminders? I’d love to hear from you! 

I didn’t think it helped~

It’s a supplement, seriously how much could it possibly be doing?

Let me tell you a story~ 

Over the last week my depression was hitting new levels of low! A lot has been going on in my life and I assumed that they were the cause of this dropping sense of worth. Then this morning I woke up in a state of complete worthlessness, a burden to all, ready to end it. But something kept saying no, this isn’t right- slow down. I posted online about my depression, and a reply asked about a chocolate cake I had ate. Awe- so now I am posting to groups asking about the cake. Hubby reminds me that I had been off of NAC almost a week, hence the reason he made an afterwork dash to the store Saturday night to get it. 

Pause-! I have been on 2400mg of NAC for almost a year- Dr recommended to help with the side effects of all of the medication. 

Did you know NAC is a super detoxifier? It’s so often used for aid in withdrawal from opiates and other drugs. It’s also an aide with depression and schizophrenia. It’s uses are mindblowing! 

Play-! So we are pretty sure that the sudden lack of NAC in my system AND the sudden binge of all of those ingredients in the cake, bust mostly LACK of NAC was assaulting my system. 

So now I see, and I have learned my lesson, that when a doctor says “DO NOT COME OFF OF ANYTHING I RECCOMEND WITHOUT MY PERMISSION,” he is not just saying that. My body desperately needs that 2400mg of that amazing little supplement. 

No, I’m not feeling better yet, it will take a few days, but now I know! 

I am ever so curious though, how do others take their medicine and NOT know about NAC? After what I’ve seen and been through in the last week, I am ever so thankful to this little pill that I didn’t think was even helping. 

Btw- this is the supplement that I ran out of, not one that I decided to quit taking. More had been ordered but the shipment was lost- it will be here tomorrow. 

Treading Water~

I wish I could pause time, step out of my body, catch my breath, get a moment of relief… Then I’d step back into my life, but it just feels like I am not getting a chance to recharge my energy. I feel like I’m running on fumes! 

I know I am irritable. 

I know I am snappy. 

I know. I know. I know. 

I don’t like it either! I’m trying to be positive! I’m trying to rise above how I am feeling. I’m trying. I’m trying and I am not succeeding. 

Maybe a nap will help!