Just take one step at a time~ 

Before I got “sick” I loved plans, I loved schedules, I loved routines and I would go bezerk if something changed! I did not like my plans being derailed at all, because that would ripple out to more plans changing. It made me crazy!

Then I got sick.

I was NOT planning on that! It took a long time to let go of my planning tendencies! Well, actually I still do make plans when I can! And yes I still get crazy when they change! 

I’ve had quite a few things going against me during the last month…

  1. Winter is setting in and my body responded to the cold by flaring and fogging. 
  2. Regular life stresses and changes.
  3. A holiday that we hosted- I enjoyed but I way overdid it and sent myself into a flare. 
  4. Traveling- it always makes my symptoms worse for days afterward. 
  5. I had completed two different trainings and was being inpatient about getting things rolling, I should have waited!
  6. Everyone is purchasing amazing planners! OMG they are everywhere! And I want one, one of each of them! But I have learned in the previous couple of years that a planner does not Work for me! I purchased them, lovely amazing planners. I did the work. But the change of plans because I slept all day or couldn’t function or had to cancel plans was a big neon Sign to me of the person I no longer was able to be! Why put myself through that? But still, Oh I want to be a planner!!! But still, I know that is not healthy for me! 
  7. I didn’t listen to my intuition, I got caught up in the moment, again forgetting I am not who I once was! I signed up for NaNoWriMo, I love to write, and last year it came so easy, so I tried again this year, even though I knew my brain is not what it was last year. I know I didn’t fail because I kept trying, but I planned on finishing on time with at least 50,000 words! I was disgusted and disappointed in myself because I didn’t accomplish what I had my heart set on accomplishing (even though I knew from the start it would be so much more challenging this year.) 

Ummmm, looking back, I can see why I was snapping emotionally! Oh and a new diagnosis of POTS in the middle of that. So yeah I did really freaking good, with all things considering!!! 

I did learn a lot through this turbulent time! I learned that…

          

  1.  Adapting to this chronic new me is going to be ongoing and ever changing, but that I must remember to accept me and my limitations with each moment as it comes! Fighting it only makes things worse! 
  2. I need to take one step at a time! Instead of spreading myself so thin then wondering why things are getting messy, I need to adapt to tiny steps! 
  3. That I am not failing as long as I am still trying! 
  4. That I am pretty damn strong for just getting up in the morning, everything else is just a plus! 
  5. That it is okay to admit when I need to step back and take care of my health first! 

There are so many more lessons I have learned, important lessons! I am grateful for the wake up reminder! 

“Keep being strong and keep being brave!”  Words posted to me from ‘Nursesnotions’ the impact those words made…

“KEEP…” the word ‘keep’ reminded me that I have been being brave and strong. I felt so weak lately, but looking back… I have been anything but weak! 

We cannot have a chronic illness (much less several of them) and be weak! Omg we are strong! We are warriors! We kick ass daily!!! 

So to us all I say, 

KEEP BEING STRON AND BRAVE!!!

*By the way, I think I found a planner that might fit me that I hope will be less planning and more projects, I love projects! 

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Thank you~

Today my heart has overflowed with tears more than once, friends being there when I didn’t even realize that was what I needed most. 

Today a special shoutout to all the friends who light the way when it’s dark, dance together in the rain, say the right things at the right times, the friends who don’t give up, the friends who remain friends through it all! Thank you! 


I am blessed with many angel friends! 💜🕯

  • Thank you for encouraging me
  • Thank you for helping me not feel so alone
  • Thank you for sharing your stories
  • Thank you for all of the little things you do, because everyone of them is something BIG to me! 

I love you ladies! 💜💜💜

To TRY or NOT to TRY? that is the question~

Today I keep telling myself that at least I tried! But the little voice in my head says “yes but you failed! You did so much better last year. You are getting worse.” I’m trying to shush that voice, but then that voice gets louder…

  • You started the Facebook group and it failed.
  • You took the courses and have done nothing with them, you failed.
  • You started NaNoWriMo but didn’t finish, you fail
  • You started your Younique business and you sell nothing, you failed.
  • Your heart longs to do astrology, you have no consistency, you fail.
  • You have no consistency! You fail at everything!!!
  • You fail
  • You fail
  • You fail

I start projects, groups, businesses, books, and without consistency they fizzle away. The things I start with passion become a chore that wilts and withers away. 

                 

Without these projects I would wither away, these projects are a double edged sword for me though. Because they feed my desire to wake up in the morning, but the guilt of my inconsistency is smothering me.

 My friends say “at least you tried.” To yet another failing attempt at doing something that fuels my passion, I have to dig really deep to agree with them. Because I really want to say I am tired of putting my heart and soul into something that is never finished, never fully materialized, stops before it gets started. 

The guilt of the unfinished is a heavy burden. In my heart I want to be consistent with posts for my Younique business, I want to post clear and insightful information about this weeks astrology aspects, I want to hold planned events with my circle of sisters, I want to be the person I was. 

BUT I AM NO LONGER THAT PERSON. I am no longer able to PUSH myself to even pretend to be that person. 


I am not giving up, Today I am searching for acceptance of my limitations. Trying to find if it really is okay to keep trying these things when I know they will most likely end up in the “unfinished” folder of my heart. 

I know how people must see me, oh she is starting something new, AGAIN! She never finishes anything. Because that is how I see me. I just need to figure out what to do about it… 

accept it? stop trying? what? 


There are many versions of this prayer, pick whichever version you know, for me, this is perfect. 

Blessings! 💜

My Doctor called today~ 

It is an odd thing to get used to, I’m not even sure I will get used to it, but I truly appreciate it… IT is my doctor calling, randomly, to see how I am feeling! 

And today of all days was a very down day! Oh well, everything has perfect timing. Right? 

He asked if my bowels are still misbehaving, then let me know that there were no parasites in my horrific stool sample (forever traumatized.) What made me smile though was “…the tests were all negative, that’s good, very good, we don’t need you having more on top of all of this other stuff.” The we made me smile! Some of the littlest things make me feel less alone. 

We talked about the POTS, he really does not want to have to add a medication, we were hopeful that the Enlyte would help, but it may come down to being on a medication. 

The nurse is calling my local hospital to find out if they do some specific test, it’s a test to find out if something is going on in my ear or if something is going on in my brain. He talks like he already knows it’s in my brain, I’m not sure why we don’t skip that test and just get the MRI or CT done. And why are we stalling on this? He hints to the possibility of one thing possibly causing many of my symptoms, especially my cognitive & balance issues, but I don’t want to talk about that unless I need to. 

Anyway, I was just impressed with him calling to check on me. Not many doctors (in the US anyway) still do that! 

So that’s what is up in my world! Hope you are doing well, sending blessings! 💜

Bad Flare Day~

I’ve been kind of lucky lately, it’s been a while since I had a super bad flare day. But today is the day! I’ve felt it coming for a few days, although I didn’t know what it was! 

Thanksgiving day I was running a fever, yesterday my ankles felt as if they were both broken, last night the awful headache came on (keeping me awake till 3:30am)  then I woke up this morning…

All of the smashing-crashing-debilitating- keep me in bed all day- symptoms have fully taken over my body! 


Who knows what triggered it, it could be the cooling weather, the stress of holidays and life lately, overdoing it! Up until last night my sleep has been good, so that’s not it this time. 

Today is especially tough on my esteem. I had brought my hopes back up about being able to Finish NaNoWriMo with a WIN, but today’s flare knocks me out of the possibility! I’m trying not to beat myself up over it, but it’s hard not to! It’s hard not to see that this combination of illnesses had robbed me of one more thing!  It is heartbreaking at best. 

For my cheerleaders saying “it could be worse, be thankful of _____” please save your breath, it is not what I need to hear right now! 

So today will look like this for me:

  • I’ve already taken my 6am and 10:30am meds
  • I’ve already forced down some breakfast
  • I’ve updosed
  • I’ve taken some pain medicine
  • The electric blanket is turned on and warming up
  • Gatorade and water are by the bed
  • I will crawl in bed, toss and turn searching for the least painful position, then I will pray for sleep
  • I will take my 3pm meds and return to the least painful position, and again I will pray for sleep

This is what my day will be. 

Days like today are the toughest! I am mad at my health and sad for all it’s robbed me of. I am tired of the pain and the never end cycle. I try to be positive, but it’s hard when you know there is no cure, that this chronic illness life is a roller coaster that I will never be able to get off of. 

Brain Fog Update~

A couple of weeks ago I talked about the new medication that is supposed to be helping with the cognitive malfunctions…

I wanted to give you an update, well as much of an update as I can. Yes, it works! And No, it doesn’t. 

I have way more clear moments than I used to have, which is very good! 

The fog, when it hits, it hits hard, which is not good! 

I love the good moments, but the bad moments are scary. I don’t know if the bad moments are worse now or only seem worse because the good moments are so clear. 

The amount of time in the brain fog is way less than ever. So that is good. I just cannot decide if it is worth the bad moments being so bad. 

An example: the other day my Facebook newsfeed showed one friend responding to another friends status, a status that showed up because I liked it. Anyway, I was so confused, like Facebook was messing up or how did those two friends know each other, for whatever reason I was so baffled about it all that I messaged the friends asking what was going on. Then of course I look crazy because now the friend is apologizing for responding to my other friends post, which I don’t mind at all- I was just super confused about how it was happening, or if it was really happening at all. I was a mess!!! 

Another example: My husband is driving us through town the other day, I did not recognize our surroundings but I spotted a Ross Dress for Less store! I was so excited “Look they even have a Ross over here!”  The following silence indicated that my brain was not working “Have we been here before?” I asked. My hubby and son told a few stories to jog my memory about times we had been there. (This type of forgetting happens often) 

So now I need to decide to stay on the medication or to come off and let my brain work how ever it’s going to work! 

I’m just so tired of feeling completely stupid in the brain fog. I miss intelligent conversational abilities. I am going to have a flat forehead from smacking it trying to remember things!!! 

#fibrofog #brainfog #cognitiveissues

Gradually Sinking into Winter~

Here in Texas the temperatures are sinking into more winter-like cools. I had been wondering for the last few months how I would do this winter. I really couldn’t remember the previous winters for comparison, but as Winter sinks into the land, the cold is sinking into my bones. 


I woke up this morning feeling like both of my ankles had been beat on in my sleep! As the day has gone on, the pain in my ankles has just gotten worse. Both ankles feel like they are broken, or will shatter if I step wrong.