I Guess I Confuse You?

Earlier today I was talking about my lovely inspired day, my uplifted mood, my accomplishments for the day and I think (actually I know) that can confuse some, so let me clarify!

1. You only see what I want you to see!

2. I have pain everyday!

3. I can have pain and a good mood at the same time!

4. Refer back to 1!

Here is me, bundled in bed, working on this post…

I haven’t showered today, my eyes burn from the makeup I put on yesterday but haven’t yet had the energy to stand at the sink at wash it off. I get dizzy when I sit up. my tailbone or hips pop when I walk. my left hip is so tense I can barely walk. From the waist down is severe cramping that moves around and feels to heavy to lift. I cannot lay comfortable on either side due to the pain. My back is so tense it is freezing on fire. I’m hungry but I cannot stand long enough to fix a meal so I will eat a meal bar. I am having to bump my hydrocortisone medication due to the pain so I don’t get low on Cortisol and go into crisis. It’s taken me 3 tries to write this much because my shoulders and wrists hurt.

But I don’t want to focus on that when I am having a good emotional day! On a good emotional day I want to focus on the good! These days are rare so let me enjoy it instead of you questioning “oh you are getting better!” Or some other thing that makes our illnesses sound like a competition of whose is worse than whose! Both of these instances are extremely irritating and degrading.

So I am going to rant, have a quick scream then I can get back to my good mood! So here goes…

What part of chronic-incurable disease do you not understand? This is NOT going away! There is NO cure! I will NOT get better! I will have good days! I may even have good days or months! But I WILL NOT BE CURED UNTIL THERE IS A CURE!!! and in my case that’s a lot of cures!!! Haha.

Competition- omfg Why in the hell would you want to, even for a minute, want to compete with anyone, about who has it worse? 1. Our illnesses are not the same. 2. Our illnesses do not compare. 3. We are different people. 4. It almost sounds like you are either convincing yourself of your illnesses or are wallowing in the misery of them. In a way #4 could make sense, we spend so much time getting a diagnosis and so much time trying to convince people that our illness is real that maybe we think we need to continue convincing. But I believe you. I believe in invisible illnesses. But otherwise, the is NOT a competition. If it was a competition it’s not one I want to win.

Okay now I have ranted— I am allowed good days! I am allowed to have good days from my bed! I am allowed to be chronically ill and still have a life thriving instead of surviving.

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Today’s Mood: Inspired with a 100% chance of Exhaustion

Today has flown by! I have been inspired to the point of exhaustion! Having just woke up from my second nap of the day and my mood is still good!

An attic front pushed into our area and pushed me into bed under the electric comfort of my blankets, but the dreary outside hasn’t drearied my inspiration!

Before the first nap I started Chicken noodle soup in the crockpot! Yes I cheated by using precut veggies and a spice pack for crockpot chicken soup! It smells so yummy cooking.

Before the third nap I got online and paid bills (some of them anyway) on-time!!! No late fees this month~ yay me!!!

Yes I skipped before the second nap… Have I mentioned the astrology course that I am constructing? It’s crazy cool to be making it up and seeing it work! I am seeing my favorite part come alive in another person- the part where they see their personality traits noted in where the planets were at the moment of their birth. Where they see that they are exactly who they are supposed to be, not broken, not flawed, but perfectly themselves as is the big plan! I love it!!! It is so inspiring, it’s a new reason to wake up, it makes waking up worth the pain!

I am inspired!

I feel like I have a purpose!

And it feels amazing!!!

And it is so exhausting.

BUT IT IS SOOO WORTH IT!!!

From Worry to What If~

Chronic illness changes people, I know it changed me, how could it not? I went from working to not able to get out of bed, I went from socialite who loved to host parties to not being able to tolerate crowds. Yes I changed.

I became pissed off at the world, hadn’t I already been through enough? I didn’t see how it was fair to keep getting diagnosis after diagnosis, the pains and medications increasing! I hated my life, my self, I hated the people who doubted me! I hated “just be more positive!” Seriously- you go through what I am going through so I can shove positivity in your ass! I hated everything!

I tried focusing on other people, helping them, so I wasn’t so self absorbed! That made things worse because I ended up trying to control everything and everyone, FYI- that causes a lot of problems both health wise and with the people you had good intentions to help! Don’t do this. You are the only one you have any control over, and that’s awesome because that means you can control your own state of mind. With a little practice.

*image from the psychedelic gypsy on facebook*

I won’t lie and say that all of my days are good, I still have days that I question the purpose of living this pain, I question the purpose of my existence, some days I still get angry. But in the last year or two I got tired of being mad, living angry, being consumed by my illnesses.

Yes I still live most of my life from my bed, but my state of mind is different now. Most days. Yes the pain is still prominent and my mind is still foggy. Nothing has really changed except my perception.

Laying here I have had time, lots of time, to think, to discover a path for my life as it is now, and it excites me.

A while back I started a Virtual women’s circle group, it’s awesome “meeting” with like minded women who also suffer chronically, from the comfort of my bed! I have friends and emotional support. But more recently I am reaching for my dreams with this group of women- I am teaching astrology in a new way and helping others discover themselves and increase their self confidence all from the comfort of my bed!

I record the videos when I feel like it, I laugh when I make a cognitive error or my mind goes blank mid recording. I type out the lessons when I can. Then I post them when the time is right.

I don’t know if my method will work, but it feels so good to be doing something, to be reaching for my dreams despite being stuck in bed and having a foggy head. I am doing this!

What is amazing is I feel like I am living instead of just surviving. I feel myself light up with possibilities.

What I am saying is there can still be a happy life even with our conditions. We can still live! We have to adapt and accommodate to things yes, but get creative and it is possible. Being mad at the world only hurts us and those closest to us!

Accept this new us, accept what is, then learn to live again.

I’ve graduated to 4 Months~

I seen the dr for my 3 month appointment today, like all appointment days it wiped me out.

So, almost 3 hour nap taken and I still feel horrible. But here is an update.

It was a good dr appointment! A slap in the face with reality but only because it caught me off guard.

*lab work looks pretty good; Cortisol still runs low, triglycerides are high- so bump the HC when I need to and cut down on sugars and carbs *gulps a drink of Mt. Dew*

*physical check up looks good

*Bone density scans the Osteoporosis meds are working, improvement to Osteopenia everywhere but my spine which still looks back.

So in my excitement I say “Oh looks like I’m doing good then!” Doctors pulls away from the computer and informs me I am an autoimmune train wreck and he wouldn’t call it good, but I’m not worse so he supposed that is good!

Wait what? To me this is all good news because there wasn’t any bad news, he apologizes (in a way) and says he just doesn’t want me to have false hopes.

No, I know I will not get better! I know I am on the list for everything autoimmune. And yes, somewhere inside of me smiled when there was no bad news today, some hopeful part that hoped I was “getting better!” So the reality check was needed but oh so disappointing.

And more good news… I don’t have to be back for FOUR months! 4!!!! I’m getting there!!!

I am still happy with my appointment, still not giving up or giving in. Still fighting this fight.

So back to waking up from my nap, reality #2; I had really hoped for a week of recovery days before the two days of driving for my sons wedding, then bam- we leave tomorrow! Zero rest or recovery days!!! ZERO!!!

Oh it’s going to be a long trip…

stay tuned to travel along.

A New Kind of Helpless

As most of you know I am going to be a grandma in June! It’s a beautiful excitement!

Due to complications my son and daughter in law to be are in the hospital for the second (separate) night.

And this brings on a whole new kind of helplessness…

I’m at home, in bed, recovering and flaring, and trying to be healthy enough for their wedding this week omg. The key word there is Home. I know there is nothing I could do for anyone at the hospital, moral support maybe.

But due to my illnesses and steroid use I am more susceptible to other illnesses and have been advised it’s dangerous for me to be around anyone sick (hospitals are full of sick people!) so I am at home. The guilt and helpless feeling I have is overwhelming.

It’s made me realize the times to come, am I going to be allowed to be at the hospital when baby is born? What about other times? Am I just advised to stay away from the hospital during flu season?

One of the possible culprits of the complications has been mentioned, Adrenal tumor- I’m all to familiar with all things Adrenal and this worries me for my sweet daughter in law to be even more.

Please send thoughts, prayers, chants- whatever to my son and his growing family.

50 First Questions~

Y’all have seen the movie 50 First Dates right? I love that movie! My short term memory sometimes reminds me of 10 Second Tom! Well keep that movie in your mind (memory haha) as you read this post.

Today I have had a discovery of the weirdest or scariest or saddest type. I don’t even know how I feel about it actually.

I used to do Astrology, I loved it! I loved the way people would respond when I explained the parts of their Natal chart (where the planets are when someone is born) that explain or describe who they are. I loved the calls or messages later from an excited client who seen the planets play out in a transit (where the planets are now compared to their Natal chart.) I loved it all.

Then I got sick!

I kept trying to stick with the readings but I couldn’t keep appointments, I couldn’t remember what planets did what etc etc.

So I stopped all together.

Then about a week ago I was asked what I loved about Astrology and like a veil pulled from the magic hat everything started making sense, the memories were flooding in. Then (I don’t remember what) something steered me toward the Elemental aspects of astrology. I’ve been like a kid in the candy store discovering new things and making tons of notes and piecing pieces together. I’ve loved it. I even wrote some daily guidance for next week based on Elemental interpretations-it’s awesome!!

Today I laid my head in my hands for a quick nap, upon raising my head I seen a tattoo I’ve had on my arm for years…

It’s the Elemental Star.

Wait! What?!!! That means… that means my love for the Elemental is not NEW, it’s a memory that is coming back!!! How can it be that I have no recollection of something I love so much? How does someone forget something like this? (Why couldn’t have I forgotten some bad memories from that time?) Why have I never questioned that tattoo before?

While I am thrilled with the memory returning, I am also disturbed, what else is missing still?

I knew my short term memory was horrible, I didn’t know my long term was missing pieces.

It’s pointless to dwell on it or try to fix it or anything, I know that.

I guess just be thankful for what’s coming back?

Ya know it also makes me wonder how many times I’ve taken the same lessons or asked the same questions from instructors or guides or mentors multiple times thinking it was the first time. How many times do I repeat myself? Is this why people stop answering me?

Oh my oh my has this stirred a new set of questions. But what do I do, ask them if I’ve asked them before, how many times? I honestly don’t think I want to know, it’s making me feel stupid.

50 First dates? Nah, I’m 50 First questions!!!

Another Day in Bed~

I started this post as a pity party for myself, spending another day in bed, another day either recovering from yesterday, resting for tomorrow, or just a down day like any other.

I wanted to talk about poor me, sick of this popcorn ceiling, lagging internet

craving foods I cannot have (oh what I wouldn’t do for a cupcake!) and on and on…

But then something totally normal happened. It happens several times a day everyday but due to something that was said yesterday, this normal event turned my pity party into a moment of deep gratitude.

Look at that face! That face is always at my side, kisses and cuddles, alerts and warmth! This is my Healing Hound! Some may say “he’s just a dog!” But to me he is not just a dog.

Some days he is my only smile. Some days he makes me laugh out loud.

This chronic life is a lonely one; rarely a visitor, rarely a call, rarely a text. But always this face is in my space.

And so today, I’ll be thankful for the Healing Hounds that brighten my day, for the friends who remind me to appreciate the moments, and for the moments I can appreciate!

There is always, always something to appreciate, sometimes it just takes a bit looking.