Expectations & Realizations~

Once a month I have the house to myself for an entire weekend (minus the people checking in on me-which I appreciated.) These me weekends used to be ordinary days of being stuck in bed with my chronic ness. But this weekend was going to be different!

I was excited, I’d had so many good days that I made plans of lots of reading, studying, and working on my big project. I got treats for me to eat, I had it all planned out!

Friday night was restless with the old pains I should recognize. Insomnia. Sweats. Nausea.

Then today I slept on and off all day.

It has been like the other chronic weekends, spent miserable.

I hate this! I hate these diseases.

I’m trying to cope, to have a life of my own with these illnesses! I’m trying to cooperate. But how?

I’ll be having good days and set appointments, set goals, make plans but then something like a weather change 3 days from now turns my world upside down.

Yes, the weather in 3 days is what set me back this weekend.

How can I adjust to this?

Patience

Acceptance

One day at a time.

Gratitude.

Flexibility.

Or something like this.

My self expectations vs actual realizations are a smack in the face. I will fight this. I will not fail.

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Astrology Insight~

Since I cannot seem to keep up on a Friday post maybe I’ll just share some insight for the week.

Cosmically Speaking is posted here if you’d like to take a look!

I hope you all had a good weekend and have a wonderful week!

The Sunshine Blogger Award~

Imagine my surprise to see Chronic Cosmic Gypsy nominated for The Sunshine Blogger Award! This is my first nomination and such an honor it is that I Tripped Over A Stone made that nomination! I’m not sure how she found me, but I am glad she did! I love her blog, she keeps it different and real! And she truly cares for her readers! Thank you love! đź’•

So the rule of eleven comes along with this award. I will answer eleven questions that were asked of me. I will ask eleven new questions and nominate eleven blogs. Here we go!

My Eleven Questions to Answer:

1. Ice cream or french fries? Both? Together, add pickles!

2. Do you consider yourself a writer? Yes!

3. What would you do if you could not blog? I would go crazy! Blogging is good therapy!

4. Have you already had your dream vacation or are you still planning it? Still planning it!

5. Sports car or muscle car? Muscle car of course!!!

6. What do you believe are the pros and cons of using cuss words on a blog? I believe the pros would be showing the bloggers true and unedited voice. The con would be some people are offended by cuss words.

7. What is your favorite social media outlet? Facebook, primarily because I am more familiar with how to work it. Lol.

8. Defend your position as a cat person or a dog person? Dogs, I really have no defense, if kitty’s make you happier than dogs then I am not one to change your mind. Just don’t try to change mine either.

9. Favorite guilty pleasure? Chocolate- the good kind not fake stuff.

10. What was the last book you read? Judgement Detox

11. Who was the last person you said, “I love you” to? My little sister!

So for the 11 I choose to nominate because I love reading their blogs for various reasons, and in no specific order, I would like y’all to recognize the following…

And the Nominees are:

Ok Then, What’s Next

Sue’s Views and Soul Loving Vibes

POTS: Finding Smiles in the Trials

okay, there has to be an easier way to add these links in here aside from saving this draft going to their blog site, then searching it in safari, the copying it, coming back here and pasting it… I’ll add the rest as figure out an easier way…

In the mean time, my 11 questions:

1. Why do you blog?

2. Are you a day person or a night person?

3. What is your Sun Sign (Zodiac?)

4. The city or the Country?

5. Biggest Blogger pet peeve?

6. When writing a blog, do you plan it and edit it, and double check it or are you an impulse blogger?

7. Do you have certain days to post blogs or is it random?

8. What is your favorite season?

9. If you were a tree what kind would you be?

10. What is your SuperPower?

11. Is this your first Sunshine Blogger Award nomination?

Thank you again I Tripped Over a Stone for this nomination.

How am I supposed to learn â€śBalance?”

This I ask more now than ever; How am I supposed to learn Balance?”

Being sick and depressed is horrible, torture, it’s not thriving but surviving. Being sick in body but full of happy inspiration and motivation in the mind is a whole new kind of torment. No one warned me about this.

I used to get so mad about people telling me to “be more positive,” and now, I am super positive and do you know what? IT DID NOT MAKE THE PAIN GO AWAY!!!! And YES, deep down I expected (hoped) the pain to ease up at least, seriously naive.

Now I have hope and inspiration and some BIG motivation! I have goals and plans! My mind and my soul are jumping with excitement and passion for life! Emotionally I am strong and happy!

BUT…

I have not found the magic wand to wave that would balance my no limits mind set with my super limited body. And seriously, the BIG question…

How am I supposed to learn balance when the triggers, life events, weather, every thing is ever changing? There is no way to balance this chronic mess. I do my best yes, but this new passionate outlook on life forgets to notice the ques, the Healing Hounds alerts are chalked up to the new energy I am exuding.

I actually had to check the weather tonight to see if these are rain pains when normally I would know before a change in weather was even forecasted.

While this unbalance is unnerving and could be dangerous, I keep telling myself that I will learn how to manage this new challenge just like I do with every other challenge.

I got this. This is just more Gypsy travels through this chronic cosmos that is my life!

Symptom Checklists~

Symptom Checklists~ We go about our Chronic life as it is, not liking it, but what can we do? Not much, unfortunately! Most of the time we feel much less like Warriors and more like weaklings, well I do anyway. I certainly don’t feel strong. But every now and then something happens and I feel like a Super Strong Warrior!!! Like tonight, in my usual position on the bathroom floor near the toilet waiting for the nausea to release I was reading Facebook. I came across a post from Clarissa Shepherd, the super supportive and ever educating admin for the ME/CFS Fibro group called Fellow Travelers, Support, and Chat!

Dr. Katrina Berne, who specializes in ME/CFS & fibromyalgia, has developed a comprehensive symptom checklist, she advises her patients to complete and take to their doctors.

DATE:

Fatigue, worsened by physical exertion or stress

Activity level decreased to less than 50% of pre-illness activity level

Recurrent flu-like illness

Sore throat

Hoarseness

Tender or swollen lymph nodes (glands), especially in neck & underarms

Shortness of breath with little or no exertion

Frequent sighing

Tremor or trembling

Severe nasal allergies (new or worsened)

Cough

Night sweats

Low-grade fevers

Feeling cold often

Feeling hot often

Cold extremities (hands and feet)

Low body temperature (below 97.6)

Low blood pressure (below 110/70)

Heart palpitations

Dryness of eyes and/or mouth

Increased thirst

Symptoms worsened by temperature changes

Symptoms worsened by air travel

Symptoms worsened by stress

PAIN

Headache

Tender points or trigger points

Muscle pain

Muscle twitching

Muscle weakness

Severe weakness of an arm or leg

Full or partial paralysis of an arm or leg

Joint pain

TMJ syndrome

Chest pain

EYES AND VISION

Eye pain

Changes in visual acuity (frequent changes in ability to see well)

Difficulty with accommodation (switching focus from one thing to another)

Blind spots in vision

SENSITIVITIES

Sensitivities to medications (unable to tolerate a “normal” dosage)

Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes,

hair sprays)

Sensitivities to foods

Alcohol intolerance

Alteration of taste, smell, and/or hearing

UROGENITAL

Frequent urination

Painful urination or bladder pain

Prostate pain

Impotence

Endometriosis

Worsening of premenstrual syndrome (PMS)

Decreased libido (sex drive)

GASTROINTESTINAL

Stomach ache; abdominal cramps

Nausea

Vomiting

Esophageal reflux (heartburn)

Frequent diarrhea

Frequent constipation

Bloating; intestinal gas

Decreased appetite

Increased appetite

Food cravings

Weight gain ( _ lbs)

Weight loss ( _ lbs)

GENERAL NEUROLOGICAL

Lightheadedness; feeling”spaced out”

Inability to think clearly (“brain fog”)

Seizures

Seizure-like episodes

Syncope (fainting) or blackouts

Sensation that you might faint

Vertigo or dizziness

Numbness or tingling sensations

Tinnitus (ringing in one or both ears)

Photophobia (sensitivity to light)

Noise intolerance

EQUILIBRIUM/PERCEPTION

Feeling spatially disoriented

Dysequilibrium (balance difficulty)

Staggering gait (clumsy walking; bumping into things)

Dropping things frequently

Difficulty judging distances (e.g. when driving; placing objects on surfaces)

“Not quite seeing” what you are looking at

SLEEP

Hypersomnia (excessive sleeping)

Sleep disturbance: unrefreshing or non-restorative sleep

Sleep disturbance: difficulty falling asleep

Sleep disturbance: difficulty staying asleep (frequent awakenings)

Sleep disturbance: vivid or disturbing dreams or nightmares

Altered sleep/wake schedule (alertness/energy best late at night)

COGNITIVE

Difficulty with simple calculations (e.g., balancing checkbook)

Word-finding difficulty

Saying the wrong word

Difficulty expressing ideas in words

Difficulty moving your mouth to speak

Slowed speech

Stuttering; stammering

Impaired ability to concentrate

Easily distracted during a task

Difficulty paying attention

Difficulty following a conversation when background noise is present

Losing your train of thought in the middle of a sentence

Difficulty putting tasks or things in proper sequence

Losing track in the middle of a task (remembering what to do next)

Difficulty with short-term memory

Difficulty with long-term memory

Forgetting how to do routine things

Difficulty understanding what you read

Switching left and right

Transposition (reversal) of numbers, words and/or letters when you speak

Transposition (reversal) of numbers, words and/or letters when you write

Difficulty remembering names of objects

Difficulty remembering names of people

Difficulty recognizing faces

Poor judgment

Difficulty making decision

Difficulty following simple written instructions

Difficulty following complicated written instructions

Difficulty following simple oral (spoken) instructions

Difficulty following complicated oral (spoken) instructions

Difficulty integrating information (putting ideas together to form a complete picture or concept)

Difficulty following directions while driving

Becoming lost in familiar locations when driving

Feeling too disoriented to drive

MOOD/EMOTIONS

Depressed mood

Suicidal thoughts

Suicide attempt(s)

Feeling worthless

Frequent crying

Feeling helpless and/or hopeless

Inability to enjoy previously enjoyed activities

Increased appetite

Decreased appetite

Anxiety or fear with no obvious cause

Panic attacks

Irritability; overreaction

Rage attacks: anger outbursts with little or no cause

Abrupt, unpredictable mood swings

Phobias (irrational fears)

Personality changes

OTHER

Rashes or sores

Eczema or psoriasis

Aphthous ulcers (canker sores)

Hair loss

Mitral valve prolapse

Cancer

Dental problems

Periodontal (gum) disease

Take another look at that list, tell me how anyone that has that many symptoms, usually more considering fibro ME/CFS usually brings not so nice friends to the Chronic party, how could we ever be considered anything but STRONG, AMAZING, WARRIORS? So brother and sister Spoonies, my Chronic Warrior family, of you ever start to feel like you don’t accomplish much, like you are weak, like you are incapable, remember the list. I’d say everyday is a huge battle won! Everyday is accomplishing great obstacles even if we just lay in bed and cry all day. We are amazing! We are strong! We are warriors! High fives and gentle hugs to all of the strongest people I know!

Today’s Low Cortisol Moment<

Today’s low Cortisol moment…

Monday and Tuesday both were off of the charts intense stress days like a missing teenager (my niece) and separately my daughter in law being admitted to the hospital at 32 weeks pregnant! *everyone is safely home now and my grand daughter is still safely in mamas womb.* but that kind of intense stress.In the midst of the stress my pain went numb and I way-way way physically over did it just trying to stay busy and not stress. That was a dumb idea because I really am paying for it.

Tuesday (yesterday) I debated the solu-Cortef injection, that is the steroid used when crisis occurs. But I just stress dosed instead. Even though I had all of the symptoms of low Cortisol including the not thinking clearly, I went to bed.

I slept 10hours minus getting up three times for medications. The pain when I woke up was intense so I opted for a video day, I couldn’t think to read so videos were the alternative.

My youngest son calls to have me call and ask my dr if it is safe for me to get the TDAP (or something like that) shot, I need it two weeks before my granddaughter is born.

So I call and leave a message on the nurses answering machine, it goes something like this…

“Hi this is Doctor (my own last name) calling for… No I am Doctor _____(my doctors last name)… No. No. I am not a Doctor, I am the patient, this is Doctor Jody. Ah. I am still not a doctor. I am calling about ________ (all the stuff I was calling about.) please return my call at ______(my phone number.)

I couldn’t get the name thing right to save my life. I hung up and thought it was very funny, sharing the funny with my Facebook friends! It was hilarious!

#2

The auto dealership wanted me to bring the title to them today! I called and said it couldn’t happen today! Long story short the salesmen came to the house and picked it up! I think he thought I was drunk because of my slurring of words and inability to stand correctly.

Back to #1;

The nurse calls and sounds concerned, asking odd questions. She said my message was not understandable, she didn’t know for sure who I was or what I was calling for. Once we finally got that all straightened out she put me on hold. Came back on and said that for today and probably a couple of days I should continue updosing my Cortisol (which wasn’t even what I was calling for) because I sounded very low and it is a concern. And the answers to my other questions would have to wait because the Doctor had left for the day while “we” her and the other nurses? were trying to decipher the voice mail message. Omg seriously I bet that was entertaining!

So my lessons for today

  • low Cortisol is much like being drunk; I think I’m talking fine but the reality is I’m slurring and talking my own language.
  • And most importantly I need to find out how people know when to take their injections! I wasn’t thinking straight so I assumed I was okay, I know that is a dangerous thought.

I’m still low, my symptoms are still present, I am still stress dosing.

Well when I started this post it was meant as a funny, but as I typed I realized it might not be funny at all. That it’s actually serious and could have been dangerous. In fact I’m a little scared now, what happens if it happens again, happens that I think I’m okay but really am not. I’ve read about it but it’s never happened to me before.

Hmmm. I will keep you updated with what I find out.

Mind vs Body~

*Ding Ding* Fighters please enter the ring!

I remember when people kept telling me I needed to be more positive! I remember those days well because what did I really have to be positive about? I’ve been sentenced to a life of pain, medications, limitations, and more pain! Positive? WTFE…

It’s been a couple of years of misery, emotional (and physical) hell, I fought it all every day. I fought the pain. I fought the doctors. I fought the “life sentence.” I fought like hell. It was a fight I was certain I would win.

Then I sunk into what I thought at the time was acceptance, I just laid there waiting for all of this to take me, for life to be over, I wasn’t accepting I was giving up.

So I fought some more. I was angry about why me? I was jealous of why do my healthy friends have no diagnosis and my are in the double digits? I had so much run through my head.

Then somehow, through all of the self help books and courses something clicked.

Acceptance! True acceptance! This is so much different than giving up! When I sat back and said to myself “This is what I have, this is me now, how do I want this story to end?” It was eye opening! I didn’t want to wither away miserable. I didn’t want to just survive till I die. “But what CAN I do?” Not much right? I’m stuck in bed most days, yada yada you know my daily stuff. “So what am I going to do?”

As much as I can! As often as I can!

My perspective started changing! My self confidence started rising! My depression lifted (for the most part!) I have my spunk back! I laugh and joke! It’s awesome.

Here is the negative…

My body hates the mental activity! Here is this mind that suddenly thinks it’s a badass and pushes the body to far to often! This busy mind gets consumed in something and forgets to take medications. This occupied mind feels a heart rate of 140+ and knows it’s to high that I need to rest in just a minute.

This emotional high I am on is a bit reckless with the body that carries it.

Part of me wants to “enjoy it while it lasts!” But the positive heart and soul in me says “JUST ENJOY IT! You aren’t just surviving, you are living!”

And as I write this a whisper in my mind says “you have found a way to live happily even if it’s from bed, from a state of pain, despite your illnesses! This is what you wanted!”

So maybe instead of trying to referee this boxing match between my Mind vs Body, maybe now my journey is to work out how they can work together without hurting each other.

Ya know, this life of chronic illness may be a never ending road, but to look at the journeys along the way is quite a phenomenal trip. The path of acceptance was a tough on, as was the journey of diagnosis, and then of course the many routes of treatment. But check me out, how far I’ve come, now I’m traveling down an unexplored area, making my own road, of how to live an exceptional life regardless of limitations and complications!

Maybe this is my adventure!

Hmmm, the Cosmic Gypsy means more to me now than ever before.