Big Changes! BIG!!!

I think it has been a bit since I posted, so I want to update y’all on what’s happening and what I have planned!

First, my doctor has upped my HC and my thyroid meds! By day 2 I was noticing a huge difference. My pain had decreased, my fatigue had decreased, my sleep improved!!! My brain fog is still horrible and when I physically feel better but my brain is foggy it is so maddening! But I’ve also noticed my heart rate and BP have been increasing! Overall, I have seen great improvement!!!

While I was at the doctor last week he had me step on the scales… This girl who has been between 118-130 for almost ever is not about to hit the 200’s! I’m not okay with that, not just the numbers, but I don’t like the full-tightness my skin feels. So it’s time to watch what I eat, no more See-Food eat it- diet! Plus a small thing I somehow forgot, I am prediabetic so I shouldn’t be eating crap! I do vaguely remember now that my last blood work showed pre-diabetic. Oops.

Physical activity~ we all know how painful “exercise” is, it can set us back days or even months! Belly dancing was tolerable before, it’s as slow or as fast as I want it to be, so I decided to start that back up! Today I made it through the warmups! Start small! Baby steps.

Also while I was at the doctor he reminded me that staying Hydrated helps with all of my illnesses but my POTS especially needs it right now. So increase the water intake!

Not doctor related; I was gifted a course last week, I love studying and learning and especially about Goddess/Spiritual stuff! I realized in that moment that I need to pull my energy together and get some sort of structure in my life, not only for the best benefits of the course but also so I am not so scattered that I just run in self destructive circles. I accomplish nothing because I only do bits and pieces of this and that so nothing gets neglects, but nothing gets completed either!

Sooooo…

I’m setting goals, making plans, building structure, and creating good habits.

  • Prioritize
  • Small steps
  • Doable goals
  • Realistic expectations
  1. Eat Healthier
  2. More water
  3. Less smoking
  4. Daily routine (flexible)
  • Mediation
  • Belly Dance
  • Journal
  • Spirit School (what I am calling the combination of courses I am working on)

See, I am making plans, organizing what energy I have, making the most of each day!

So my Big changes are starting! Day 1!!!

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Some Days are just like this~

With chronic illness we have good days and bad days, days we have fierce warrior fighter skills and the world sees us smile, and days we have no fight left and don’t see this life as worth while. Some days are just like this.

Today has been rough, physically and emotionally, today I didn’t have the energy to fight and tonight I wonder what it’s all worth. Seriously, I fight this fight day in and day out, and for what? To do it all again tomorrow? There is no relief in sight, no shining light, no cure.

The loneliness is consuming me.

The hours of thinking through the pain.

Setting goals knowing I will not follow through, but they temporarily give me hope.

Temporarily. Temporary. This too shall pass. Right?

Right?

All of my tomorrows are a new chance at one of the good days, a new chance to remember all of my reasons for fighting another day. Some days are just like this.

Some days are just like this!

Take a breath— no! Take a deep breath!

*image found on Pinterest

I’ve survived worse days, I’ll make it through this one too, because no matter the day one thing stays the same- hope! No matter how small it is, hope remains.

So when my heart is sinking from the many hours spent alone…

When my fight is wore out and no light is shone…

When I want to give up…

Some days are just like this. This day will pass. A good day will come and remind me why Hope remains, through all of the days.

Some days are just like this.

A Fibromyalgia Diagnosis is Emotionally Deceiving.

I think back to my fibromyalgia diagnosis, 20+ years ago and I remember being so excited, after a couple years of testing, to finally have a diagnosis! Because a diagnosis means a treatment. Right?

I think back to when my symptoms all multiplied by 10 (by 100 on bad days) and the first few doctors said “well you do have fibromyalgia!” They said it like it explained everything… in this case Addison’s Disease was yet to be diagnosed, so fibro was the answer.

Okay, so it’s fibromyalgia! That sigh of relief and this wave of “Okay give me medicine so I can return to my normal life free of pain” washes over the newly diagnosed.

So the first prescription!

And the second!

And another!

And more!

What the heck is going on? I am not getting better…

That is the deception of this wickedly cruel illness… you won’t get better! You may learn to manage symptoms! But you never get to go back to the day before fibromyalgia!

You might get lucky and have periods of “remission!” Cherish those periods!

So while your loved one who finally has a diagnosis is happy to have answers, be prepared for the day they realize that this diagnosis is emotionally deceiving.

Faulty Hamster Wheel~

I’ve talked a bit about brain fog and the the other cognitive impairments that come along with any one of/all of my chronic conditions, lately something is happening and it’s funny not funny.

I’ll be thinking or talking and a word (or part of the word) gets stuck on repeat either verbally or mentally. First of all if this is happening out loud it’s very embarrassing because it just repeats even when I try stopping. But in my mind when it happens it’s irritating and kind of scary. I mean seriously, what if a word, just say cracker, gets stuck, what if it doesn’t get unstuck? What if the word “cracker” repeats itself in my brain for the rest of my life!

Crackercrackercrackercrackercrackercrackercracker— you get the point!

It’s like the hamster is stuck on the wheel, the wheel just keeps on spinning.

What if, it just looks like I am staring off into space but in reality is my brain just repeating cracker cracker cracker.

Dumb thought maybe, but when it’s happening it is kinda scary.

Anyway, that is my randomness for today.

*image found on google images, “The start sessions” is all that is listed.

It’s only Day 2…

At Monday’s doctor appointment the doctor upped my steroids from 30mg to 35mg! I started the new dosing Wednesday!

Aside from being unusually emotional (which could be the NewMoon energy) I have noticed one really cool thing.

I didn’t notice it at the time, I noticed it when the bed was still made tonight when hubby was getting ready for bed…

I didn’t take a nap Wednesday (despite feeling very unwell) or Thursday! Maybe my depression says I should have napped? 🤔

Usually it will take several sleep periods to equal 7 hours of sleep…

But look at this…

Both nights took only one sleep period to reach my 7hour goal!!!

So the plus is I am getting better sleep.

The minus is this depression.

We will see if it continues. 🤞

On Friendships~ again.

Don’t worry, this one is not a bash one or the other kind of post. A pity party post? Maybe. A what the hell am I supposed to do- post? Yes.

So here it is… Raw & unedited!

I suck at friendships! I really suck at everyday friendships, honestly, they exhaust me. I know it sounds horrible, but sometimes (okay most of the time) it’s easier to be alone than absorb someone else’s everyday issues (and the issues that constantly repeat themselves in someone else’s life) no matter how much I love them.

I’m very empathic and no matter how hard I try I cannot help but absorb their stuff, especially if we are everyday friends.

I suck at trying to make plans or travel for said plans. I am getting more confident about driving, but that doesn’t mean I don’t stress myself sick over it, so seriously, I don’t want to ruin what could’ve been a good time by me arriving to sick to participate. And that doesn’t even include the effort being at any sort of social gathering uses up. So you see, I’m not a good friend for this either.

Online, okay I’m not to bad here except I am horrible at responding to long IM’s, the information gets lost before I can respond! Actually the same goes for reading/commenting on other people’s posts! Yes I can post okay, I write it in notepad, edit, reorganize the thought, the copy and paste.

I really appreciate the “just checking in” posts, but I apologize for not having much to say most of the time. Again, its responses.

First of all my brain is all wonky- worse than normal the last couple of months.

Second, I’ve drastically changed what I have energy for as far as conversations. Small talk and he said-she said used to feed my drama dragons and I loved it but I just cannot handle the drain of energy anymore. Hence the reason many dynamics of current friendships are changing.

Now that I have been raw about what a crappy friend I am, I also must say that friendships are what I crave most.

It’s hard to make new friends for all of the reasons above, sometimes I just look at my dogs and say “I don’t need any friends anyway!” But then I roll through Facebook and see pictures of active/healthier friends out with friends having fun, enjoying friendships, having girls day, nails, tea, lunch whatever (i am so happy for you who gets to do this, I truly am!) but my heart shatters! That used to be me, having fun, laughing, girls day, having friends!

Then I beat myself up for being unable, then I wonder why I have to keep going through this.

Then..

Then…

Then…

It just goes round and round!

I miss the companionship of a face to face friendship!

I also miss having the energy to be the kind of friend I want to have.

(Yes I am at a disadvantage being “new” to town and not knowing anyone- but to meet people here I have to get out and — who has energy for that?)

I love the Moon~ Moon Face, not so much

I am a lover of the moon, I am that “isn’t the moon beautiful!” every night- kind of woman! However moon face is a whole other story.

Tomorrow I up my hydrocortisone dosage from 30 to 35mgs as per doctors orders!

I know it sounds vain considering I take the steroids to stay alive, but I do not want the moon face.

I have always been self conscious of my round face! Now because my dosage is being upped even more, I expect Moon-face is in my near future.

If it makes me feel better, I will gladly accept moon face, but if I still feel like crap, if I still have messed up sleep- it is not a worthy trade off.

Anyway, just a bit of a vanity rant.

*image from Healthline on google search.