Sharing of the Light~

I would say it’s the Holidays, but it started a couple of months ago. That tailspin into the darkness of winter, that almost not noticeable cloud of depression settling in.

Only that cloud has been noticeable! I’ve been fighting so hard to stay on top of it! I distract myself in every way imaginable, yet there are moments of quiet. Those are the moments where I spin.

I get hyper focused on something, usually something that I can dig and rehash and find new ways for it to make my self worth drop lower, ways I can further validate my invalidating and destructive behavior. Yes I see it, yes I know I am doing it. I shift from “it’s all in my head” to “no it’s it’s not in your head, look at the proof!” The results are the same, sinking and spinning.

Rarely is my behavior met with compassion or communication. I guess I understand that, but that just sends me deeper into spinning. Saying “Hey I can’t help it.” Wouldn’t help. People don’t get it. They only see what they want to see, and I understand they don’t see what I’m actually going through.

I’ve been accused of not understanding that others have a life, that I’m being selfish when I need a friend. Yet part of me wonders why, when I’m available to them through their stuff even when my stiff isn’t good, why it’s so hard to expect the same?

See, then I start spinning again.

I know I need to be my own light.

To stop this spinning on my own, I try, I really do. Does anyone actually experience this spinning because they want to? I doubt it.

I did amazing all summer, in the months of warmth and bright days! I was doing so well I asked my dr about coming off of one of my depression/ anxiety meds, he suggested I wait a bit longer that the winter months are the hardest. Yep, yep they are.

So to you my friends, struggling with the spinning in your own thoughts, sinking into your own despair- you are not alone.

I say to you:

Hey friend, how are you? How are you today? Just popping in to say I’m thinking about you.

You are not forgotten.

You are not alone.

Here is light for you in this time of darkness! When it’s tough to shine your own light, I will share mine!

Blessings.

*image from google candles.

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I am bad Advertising for a diet plan~

I have done awesome on this diet/lifestyle change! I have done way better than I expected!

Even hitting the 20lb loss mark last week. Yay me.

Last Saturday night I CHOSE to cheat. Not temptation indulgence but chose that I wanted something specific to eat. And I did.

Baked potato loaded (my healthy choice was I didn’t double the butter or sour cream like I usually would and I did not eat the skin which is usually my favorite part,) bread (healthy choice was not indulging on that last piece,) sweet tea!

I savored every bite! Every bite was cherished. It was delicious. It didn’t make me sick either which surprised me.

No guilt! I loved it.

Sunday came along and damn if I don’t give into a burger. I didn’t make it a double and I didn’t supersize it! Didn’t even add the bacon.

Okay a little guilt but I will get back on plan on Monday.

And I did. Monday morning I stepped on the scales and my heart sank. Up 2+ pounds. 177.8. So much for the 20lb loss.

Back on the plan strictly!

Guess what? Today I stepped on those unforgiving and tattletale scales…

173.6

I am back on track.

Yes it was worth it for a couple reasons.

1. The food was enjoyable. (One of the reasons I started this plan was to improve my relationship with food!)

2. I consciously made better choices. Maybe not super healthy choices, but 50% better than I used to!

3. It amazes me how much weight those two meals added to the scales.

4. This plan really works to get the weight off.

So all in all I am pretty excited.

Oh and I did not even dip into the Halloween candy!!!

It Is Not Your Fault~ EVER!

This is probably the most important post I have ever or will ever post.

My timing may be off and for that I apologize, but with it being Halloween/ Samhain, remembering the lives of those who have passed and other events recently I need to say this.

Everyone tip toes around my stress level trying not to throw off my cortisol. Good news and bad news, everything. To protect me. And I love and appreciate you all for that.

But…

I need you to know that if I have to stress dose, updose, emergency inject, go to the ER because of my Addisons Disease, it is only because of my disease.

It is NOT your fault.

You did not do it.

It is the disease and that is something that cannot be helped.

Yes we take precautions to keep me safe, but if those can’t be avoided, it is what it is.

I repeat…

IT IS NOT YOUR FAULT!

You DID NOT DO this to me!

Second~ I know you worry about me! Thank you! But in some situations I know that things cannot be changed or helped or whatever and you need to take care of you! TAKE CARE OF YOU!!!

I would never ever want something to happen to me and you think it is your fault. Ever.

This is the disease. This is the disease. This is the disease.

Thank you and I love you.

Through the good & bad~ happy or sad

Earlier today I posted on my Facebook about the Healing Hounds acting weird, they have started (Or I’m just noticing) getting super clingy a few hours to a full day before I flare up.

Sure enough rain is coming. Sure enough the pain has started.

The rain pains and healing hounds are only part of the reason of this post. Actually this post goes in a few directions.

1. What is this all worth? Why do I keep fighting this loosing battle? I know I am not alone in wondering this, in my case (this time) it wasn’t a suicidal thought, it was just a honest question to myself.

The pharmacy had refilled two of my prescriptions (correctly) and we had picked them up earlier that day. I plucked the staples and dumped all of the little bags onto the bed. I double checked each one for Brand and milligrams, then arranged all 10 bottles full of my little white life support pills into the Pill bag according to dosage. Recounted, rechecked then felt the tears slide down my cheeks plopping onto the notebook I keep track of meds in. Salty little pools of sadness and fear mixing with the blue words to create dark inky clouds of reminder that this is my life.

I take these little pills every few hours, without them I would die, maybe slow and painful or maybe quickly. Most days I just take them without a thought, somedays I am thankful, somedays I fight them like I had a chance of winning. This day I was angry, why do I have to live like this kept racing through my mind about the pills, pain, painsomnia, appointments, blood draws, huge expenses WHY…

Fast forward to today…

My pooling inky smeared tears have dried, my body is aching in advance of the change in weather! The hounds were right, the pain is setting in! I wish I could figure out what I could do with their early warnings. More rest or something to make the pain less intense when it does come.

Anyway, my “why” has an answer.

Because I have important people to be here for, people I have yet to meet and people I know but rarely see. I have places to go and memories still to make. I am not done here and the people are not done with me. I fight for these reasons! I take my pills, go to my appointments, get my veins jabbed, for these reasons. And I find myself being thankful for it all because all of it keeps me alive to meet the people, make the memories, experience milestones- to be here for my life.

With that all said…

I swing back into angry mode.

We talk about stressors that trigger low cortisol; illness, accidents etc and emotional stress. Emotional stress can be sudden or drawn out, it can be happy or sad or even mad. Yes I said happy! And that makes me mad. Why can’t we (I) enjoy happiness without updosing? Or even with updosing. Why can’t we be given a “happy pass” to enjoy a moment, bask in the excitement that life offers without skating the thin line of crisis? The headache that makes my eyes swell, the nausea and vomiting and fear of falling asleep in case my cortisol drops and I don’t wake up… why!!!

Then I drag myself back to thankful…

I am happy to be alive to experience these moments and moments to come.

I am thankful for the medications I have access to so that I can stay alive.

I will be here to make the memories.

Through the good and the bad., Happy and sad, it may knock me down, but I’m still here.

My Chronic~Hot Mess of Diagnosis’

I repost those every few months for new readers and friends. It is not a sympathy post in any way! It’s mostly to let y’all know what I do have in case you have it to and have questions or comments. I post it for friends because a repost is easier than listing it all off again. I also repost during awareness months…

So here it is.

*image from google search- originator was left intact.

What is wrong with you?” Is a question I am most frequently asked, it makes me cringe because where do I even start? Usually my response is “I am an autoimmune train wreck!” But for the purpose of this post and those who I am encouraging to read it, I need to be more specific. Here is my list of diagnosis’ currently, if I’ve remembered them all:

1. Addison’s Disease

2. Fibromyalgia

3. CFS/ME
4. Osteoporosis

5. Osteopenia

6. POTS Dysautonomia
7. Hypothyroid

8. Hashimoto’s
9. GERD

10. IBS
11. Chronic Myofascial Pain Syndrome
12. Multi-System Degeneration of the Autonomic Nervous System

13. Scoliosis

14. Hypoglycemia

15. Pre-Diabetes

*I have attached a link to each of the above in case you want to know more.

And to name a few tag along illnesses (illnesses that usually come with one of the above)

Raynaud’s Phenomena

depression,

anxiety,

ptsd,

plantar Fasciitis,

ocular migraine,

Neuropathy in both feet

cognitive impairment due to illnesses,

short term memory disorder,

insomnia and missing stages of sleep,

Polyarthralgia

multiple deficiencies in vitamins and minerals,

malabsorption.

And of course there are the tag along symptoms that are so common that there is no need for a “diagnosis” like; chronic dry eyes and mouth, chronic diarrhea, tremors, lingering sore throat, fever, allodynia pain, hair loss, vertigo and this list goes on for days.

The pain obviously effects me 24/7. The insomnia makes it all worse, add in stress (physical or emotional) and symptoms flare. Weather changes also cause symptoms to flare, I know rain is coming before the weather reports do. Even getting nervous about meeting new people or going to a new place can trigger me.

The cognitive impairments are my biggest complaint; recall specifically, memory recall, recalling common words or instructions for tasks or in conversation. For example I know how to heat a can of soup, basic right? On a low cognitive day I cannot remember how to do such a task. Another example, I will answer the door to the person who looks familiar through the peephole but it may take several moments to realize he is my son that I see on a regular basis.

The cognitive issues are a big stressor for me, I feel it makes me appear dumb or like I am lying about the context that I am talking about. I am neither dumb nor a liar, but these illnesses rob me of my intelligence sometimes.

*image from The Mighty

As you can see my day to day life is a struggle at best. Some days you would never know anything is “wrong” with me, and other days you would think… well I am not sure what you would think.

Some days I want to give up and let my chronic-hotness of a mess just take me, but I fight hardest on those days for a reason to live. Some days I find inspiration to enjoy life and want to live, somedays my will to live is obvious in my every-word.

Of all of my existing diagnosis’ I also make the “Rare” category with Addison’s Disease. I believe adrenal insufficiency is more common than “rare” standards but that is for another post. Addison’s disease can be fatal if a crisis is not treated correctly and quickly, but because it is rare, finding a dr who knows enough about it is challenging. Unlike diabetes I cannot check my blood Cortisol levels and it is constantly a guessing game if I need more or less medication, therefore I can easily drop to dangerously low levels without even realizing it. Adrenal crisis is my worst fear. I do carry an emergency injection kit with me at all times.

By now you can probably see and agree that I am a chronic hot mess. I do my best everyday, except the days I stay in bed because my energy to fight it has worn out and I need a recharge.

Well, now that I have explained all of that… whew- this post has been a while in the making. I hope that you can now see that I am the way I am for a reason; last minute cancellations, stammering for words, taking a bit to respond to messages, forgetting to respond or answering in a confusing way, not recognizing you, not recalling a funny or sad memory and so on are just part of who I am. Please be patient and understanding. I am not this way on purpose and believe me, it irritates and frustrates me way more than you could imagine.

So there it is. My chronic hotness of a hot mess is explained!

Oh and FYI- this wasn’t a sympathy post, I don’t need sympathy I need patience and understanding. I may be a chronic hot mess, but I am badass in my chronic ness.

*image from All gifts considered- google search

Making Friends Between Flares~

Making friends between Flares.

So you made it out of the house! After months or years of being basically house/bed bound and you are finally healthy enough for a social outing!

Great! Feels awesome. The smiles feel real despite the anxiety of having been a hermit for so long. But there you are doing it, making friends! Feeling alive again.

Most of us spoonies have been here, absorbing these “remission” moments, not having a clue how long they will last. Basking in life.

You are out doing life as much as you can. The chronic hotness isn’t gone but it’s manageable. You can smile through the pain. The outings are worth it. People wouldn’t even know you were a chronic hot mess if you didn’t tell them.

Your new friends know, they say they understand because chronic hotness is personal and in their lives too.

Seasons change, the weather aggravates your symptoms, the first big flare since the “remission” started. You don’t notice it at first; more down days, more pain and in that comes the moods of anger, depression, and fear. Yes fear of the good days disappearing, of going back to that dark world before remission.

You keep trying to smile through it, but the pain and “moods” start sleeping through the walls you’ve worked so hard to construct. You say you are okay.

Your friends know better, this is a side they haven’t seen.

And here is where things change.

Your phone stops ringing.

Outings are canceled.

Excuses are made.

And darkness.

It’s hard not to be angry. It’s hard not to be hurt.

You didn’t ask for this illness! You can’t help the moods! You can’t be the same person you were when the remission had you out laughing and living. But you don’t have a choice.

It’s hard not to be mad at them.

It’s hard not to be hurt by them.

They said they understood.

And here is where things change again.

You’ve been here before. This isn’t the first time friends go away.

Remember the life long friends who walked away? They knew you and your ups and downs well and where are they now?

But you expected new friends to stay?

Our truth is that not everyone can handle what we go through! That doesn’t make them a bad person and we are certainly not at fault either.

It just is what it is.

Thank them for the memories while the days were good. Thank them for the laughs. Be thankful for the friendship as it was. Don’t pick it apart and notice all the bad so it hurts less, just let it be.

Beating yourself up won’t change anything. Let the hurt go and move on.

Focus on you! Your health needs you.

I know this is a stark reality to face, just another aspect to our chronic hotness.

Be thankful for those still standing by your side. They may be a thousand miles or even oceans away, but be thankful to them.

Rather they are in your life for a season or forever, be thankful for the part they have held in your journey. Send them love.

*image found on Pinterest- origination left intact

As for if the flare is a month long or years, only time will tell.

So my chronic Warrior, prepare for battle. Only you can do what you need to do.

Cosmic Blessings.

Week 4 Weigh In~

I’m not going to lie the last month has been less than enjoyable, but like everything else around my chronic-hotness I don’t know what has caused the downs. The weather has been wet and super humid. My astrology chart calls for a lot of emotional “unbalances” and then full moon energy didn’t help that. The cranky urges to eat bad stuff, the never ending craving for more salt (which I have been catering to a little bit due to the AI) and then of course the usual going on in life… so I don’t think it’s just the diet that has made the last few weeks hard.

So what have I noticed? Still sitting at the same I reported on last time, it not hurting to bend over etc. The IBS or food allergy or whatever is wrong with my stomach has shown some ups and downs instead of just downs, so I am hopeful that my gut is healing.

My pain has been bad due to whatever is flaring right now, standing for more than a minute or two makes me burn.

Sleep, again I believe due to the flare is all messed up.

Friendships made since I’ve been doing good seemed to have chilled since this flare started, I guess people don’t understand as well as I think they do until the flare hits, but that’s for a different post entirely, Making New Friends Between Flares (here)

Anyway, aside from all of this, I am happy to report that I have finally hit the 20lb weight loss mark as of today!

What advice I would have for any of my chronic brothers & sisters…

We are not healthy and we will not loose weight like “normal” people do. Our medications, down days, activity level, activity availability and so on play a huge role. Do not give up! Go at your body’s pace! And. The scales don’t always reflect the inches lost! I was loosing inches but the scales seemed stuck at one ounce from the 20lb mark for a week. Do not give up.

I initially started at 196lbs and my goal was 145. I’m at 175 now and think that 145 may be to skinny, I don’t want to look sick again so I have a floating goal of 160.

Oh and the food…

It has been delicious. The fuelings, I have found a few I love and a few I am sending back! But all in all- I’m sticking with this journey!

Cosmic Blessings

#weightloss #chronicIllness #loosingweight #gettinghealthy #Optavia30