... huh?

The struggle is real.

Extreme Fatigue

Exhaustion. 

Fatigue. 

Lethargy.

Weariness.

It's so much more than just being tired... And it hasn't been this bad in a very long time... it's so intense that... a visit to the doctor is in order.  

It feels like I'm struggling to walk through wet sand that comes up to my knees and I'm being forced to pull a transfer truck behind me.... 

Brrr

I've never been a morning person... even less so now that I have chronic pain...  Freakin' 24*?!  You have to be kidding me....  Not even my electric blanket cheered me up this morning.

Image Credit: Matt Bellassa, the fabulous! 

extreme fatigue

Ugh I'm absolutely exhausted today... its not being tired, its this bone deep extreme fatigue...  

I'm awake, showered, dressed, and at work.... and now I have to do something while I'm at the office? 

Ugh can I go to sleep yet??

Prednisone Blues

For the last couple of days I've been having some major asthma issues.... I mean - extreme moments of "I cannot breathe, should I give myself a Greys-Anatomy-inspired-tracheostomy??" 

Thankfully, my other health issues went into a bit of a false remission while I was taking the steroids, especially the lupus and fibro pains.  Yet while I was taking this horrible stuff, my blood sugar was raging out of control!  That's ok though, because I would rather be able to breathe and just have to avoid certain foods while I'm on prednisone.  

The thing is, I become extremely emotional while I am taking Prednisone.  I cry easily and over things that normally I wouldn't bat an eyelash at... Then again, the exhaustion of fighting to breath every moment of every day is probably catching up with me...  I can't sleep at night and I can't get a break (of downtime) during the day.  Please keep me in your prayers, this asthma is no joke.

Waterpark Win!

 
 
Today my brother Johnny took us out to the water park for his birthday.  It was so much fun!!  Jennifer, Johnny, Missy, and myself all spent the day at Lake Winnie.  The amusement park is local and one of our best kept secrets - especially since they have opened up the water park addition!

 

The waterpark is amazing, it has slides galore and a crazy river (like a lazy river on steroids)!  That's where Jen and I stayed all day.  Don't get me wrong, I have always loved waterslides... but I was really scared that this would happen (see picture).And I didn't want Missy to see me get stuck in a waterslide... And I didn't want the evening news to witness my rescue by the local fire trucks.  But that being said, we had a blast!


Thanks to the amazing offer that Jennifer found on kick@$$ sunscreen (SPF 50, trowel not included) we were only mildly burned.  It was the first time since getting my pump that I have spent the day monitoring the time, watching my sugars, and attaching it every two hours for at least fifteen minutes to keep my sugars in range.  I have to say that it was a huge WIN


Of course the hardest part of managing my pump while swimming was keeping an eye on the time.  But I seen this case on Groupon about three weeks before and it guaranteed to keep a smartphone dry even when submerged in the water.  It works!  Thank God!  Which was awesome, because I set the alarm for two hours, locked my pump, meter, and stuff in a locker and swam my heart out until the sound of the alarm pulled me from the crazy river.  I don't remember the name of the pouch right off the top of my head, but I got it super cheap by using groupon.


Considering the last time I spent a lot of time in the sun I was completely roasted and this time I had even more insulin and medication in my system (thanks to my new diagnosis and pump) - and this time I walked away with a touch of pink.... this was a huge success!

 

Snoring Beauty

     

This could totally be me some days!  I think I could sleep and not care who was in the room, counting my snores.  haha  Last night I fell asleep around 9:20pm or so and didn't wake up until this morning after 1am!  And that was only to get a drink of water and then I went back to sleep, sleeping soundly until almost 8am. 

 

And here I am, barely 4pm and I want a nap so badly I cannot see straight!  The fatigue has been really bad since the onset of IIH, the doctor said that it could be from my body trying to normalize my spinal fluid pressure again.  When I add on the fibro flare that I'm in and how my asthma is acting up because of the Spring Allergies, its a wonder I'm awake now. haha

  

 

Mental Mind Meld

Nov. 21.  Mental Mind Meld.

Mental health issues can affect many other conditions. Write about mental health, emotions, and challenges as they relate to your condition. How does your mental health affect your overall wellbeing?

All month long I dreaded this blog entry - this is what I am struggling with the most right now... I don't know if it is the grief or depression/anxiety that comes with chronic pain... or if it is from my time on the insulin pump and how my 'normal sugar levels' are changing... or if its from my fibro/lupus and the medication changes I've been going through... or could it be depression as my cervical cancer is finally in remission...  or am I having a mid-life crisis because I am 34 and completely utterly alone - so much worse than just being single... or am I just going crazy? 

Whatever it is, I am not doing well with it at all.  Which means I'm not resting well when I have the chance, which leads to problems focusing and concentrating (outside of work)... I feel somewhat normal at work most of the time, so I am spending massive amounts of time there - I have a purpose at work... and that's not good for me either.

So the short answer to the blog question is:  pfft. 

  

Evolving as a person

Nov. 13.  Evolution.  Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?

I was always the one helping take care of everyone while I was growing up.  I assisted Mom with babysitting, by either changing diapers, giving snacks, helping younger kids with their homework, etc.  I also did a lot of work with the animals on the farm, feeding and watering cattle, slopping pigs, etc.  So when Mom and Dad became sick, I stepped into that role of caregiver without a second thought.  I don't regret it, because it taught me a lot about myself and the perspective of others in that role.  Professionally I work with adults who have mental or physical disabilities... It's that caring nature coming out again.  

Once I was diagnosed with my condition, it gave me a shocking perspective that changed how I cared for others.  It changed how I see different things, no longer is fatigue synonymous with sleepy.  I know that sounds weird but for me it is the truth.  Sometimes the fatigue can be so bad that I struggle just to do what I absolutely must do... but I'm not sleepy or sleep deprived.  I'm just fatigued and my limbs are so heavy that lifting them sounds as unrealistic as lifting a parade of elephants with my bare hands... yet I do it, every single day.  On those bad days, I have never been so thankful when they occur on the days that I'm off work.  

I used to be an activity based person, bonding with others through actions, games, etc... Now I am much more conversation based.  And the brutal truth is that that is becoming more and more text based.  Its not that I'm hiding from the world, but with my asthma the way that it is, actual conversation can be difficult to manage sometimes - especially when the pain and fatigue is at its worse.  

Little Sister to the Rescue

Ugh I have been sicker than I have been a very very long time... 

Major asthma attackS - as in multiple knock-me-out-cant-breath attacks a day!
Severe bronchitis
Strep throat
Double Ear Infections
Nose Bleeds
Vomiting
Diarrhea 
Blah!!!!

I missed three whole days and two half days of work - which NEVER happens with me!  I am almost always at work :(   Luckily, I was at home and Jennifer was there to take care of me.  :)  


It may have went a little bit like this... 

.....and then this....

... but its the thought that counts!!  Right??

In all seriousness, I couldn't make it through a normal spoonie day without her love and support, so her willingness just to be there was key to my survival of this ordeal.  

Thank you Jennifer, I couldn't have 

gotten through any of it without you.  

Worry About Yourself.

I am definitely having one of those days!  I just want to tell everyone "No thank you, just worry about yourself."  I'm not referring to friends or family members who genuinely care about me and are sincerely checking on me - but for everyone else...  

I'm fine.  Family is fine.

Work is good, just keeping me really busy.  

Thank you for asking.  

Worry about yourself, please.

It's not that I don't care that others care or I mind - its just.... I don't have time to stop and think about how I am and I don't have the energy to try to put it into words so someone else can comprehend.  I just... I do better if I can just keep going.  One foot in front of the other, one day after another.  Healthy or not - I don't know yet.  But thank you for your concern, just worry about yourself :)  

Depression

I grew up hearing a good bit about depression, I had family members who suffered with it.  I'm familiar with the bursts of tears, the overwhelming 'what ifs', the desired escape from everyday tasks and the wild cycles of fearlessness that can tumble a family head over heels on the cycle of depression.  What I never realized, until recently, is that there are many symptoms of depression... 

• Lethargy - I'm just tired a lot, fatigue is part of my condition
• Trouble sleeping - Its just fatigue and with the pain levels I can't really rest
• Apathy - I'm still grieving, feeling lost
• Sadness - Again, I'm grieving... I've been through a lot lately.
• Irritability - I'm grieving and in pain, so I'm a little on edge sometimes
• Detaching from friends - well when I'm hurting like this I really don't want to actually do things.  Plus I'm majorly broke - all these meds aren't cheap!
• Appetite and Weight - That is none of your business, but yes I've gained a bit of weight...
• Pain - Hello I have Fibro, Lupus, Diabetes, PCOS, Asthma and Arthritis - aren't you paying attention?  

The problem comes in whenever you have overlapping diagnoses...  Is depression a side effect of an autoimmune disorder?  Or is depression its own sickness that leapt on to the straw piling on the camel's back?  You can see how it can all blend together... 

I have been telling myself for a long time now that I'm not depressed.  I'm fine, just tired.  I'm dealing with everything and just resting.  I'm not depressed, I'm not suicidal and I don't sit and cry buckets all the time.  I work full time for crying out loud.  I'm not detached, I'm broke - there's a difference.  I'M FINE!

Well maybe... I mean, that.... That sounds about right.  Shit, maybe I am depressed.

Emmanuel and Phillip

This has made me laugh so many days this week, and I wanted to share it here. 
I have been going through a flare, like so many others, due to these weather changes.  I am so thankful for these guys and their videos, because it has really lifted my spirits.  

I have to admit that Jen and I often do this with people we see looking all wrong in public.  We don't really talk about how people are, more like their clothing selections.  But it tends to go something like this: 
        me: Don't let me leave the house looking like that. 
        Jen: Don't worry. 
And sometimes it is shorthanded.
        me: -ahem-
        Jen: Absolutely not.

Thank you to Emmanuel and Phillip Hudson for your comedy!

O Christmas Tree

It's that time of year!  Children are getting excited about Santa, places are decked out in holiday decorations, commercials have doubled on tv/radio, and everyone is elbowing fellow shoppers for an extra nickle off that (seemingly) brilliant gift idea you seen at a bargain store.  If you are like me, you dread getting asked what you want for Christmas.  Its not that I'm against gift giving, but my money doesn't go far these days.  And when someone asks me what I want, it really reminds me that I have a growing list of gifts I should be hunting down.  I've always been the kind of person that would rather put time into a gift and give something meaningful.  But with energy as scarce as it has been in 2012, even that thought is making me nervous.  

This Christmas season, I feel more lost than I normally do.  I miss my parents so very much and I'm thankful for the family I have with me... But I also feel like I've lost the 'Holiday Spirit'.  I have no desire to put up a Christmas tree, decorate with lights, or even to put together a group of friends to do phone-caroling.  (Which is like regular caroling except its done over speaker phone because I'm a bit lazy.  lol)  

The closest thing to making me feel even a little Christmassy has been this Readers Digest slideshow about Wacky Ways to Decorate Christmas Trees.  Don't freak, they aren't super-crafty-Martha-Stewart type stuff, these are truly creative!  Some made me laugh, one or two made me stare...  It's worth a look! 

Day 18: When the Dinner Bell Rings

This morning I am thankful for Facebook.  Not only has it allowed me to catch up with friends from my childhood, but it has also helped me communicate with other spoonies so I feel less alone.  I also post a lot of pictures that make me laugh or inspire me.

One of my favorite pages is When the Dinner Bell Rings.  I'm not sure who does it, but it haves amazing DIY type things.  From how to whiten your nails for the holidays to easy crock pot recipes, it is definitely one page I look forward to seeing each day.  I have used some of their yummy recipes when I am having a fibro day and very few spoons to spare.  If you are on facebook, please take a minute and check out their page. 

Day 17

I am thankful for the memories I have of my parents... and for the videos I have of my Mom on my phone.  

They never fail to make me laugh, even though I seem to miss her even more after watching them.

A deep breath of Gratitude: Day 10.

Those that know me, know that I have pretty bad asthma - which my lupus tends to aggravate.  Today I am thankful that my asthma seems to be easing up a bit.  Hallelujah!


I couldn't be happier!!

Seriously.  I'm even happier than this crazy hyped up gator. 


The thing is, today is one of the first days I've been able to breathe semi-easy (especially for this time of year)... and how do I spend the day?  Resting. lol  I have been able to actually rest and recharge my battery a bit, not being able to breath wears a girl out.  

On the topic of asthma, I really want this shirt. 

Showin' Some Love: Day 3

I am so very thankful for Netflix.  I know that this may sound a little out of place in my list of blessings, but I sincerely am appreciating Netflix today.  It's a rough day, pain and fatigue, monster headaches.  Blah.  But you know how that is.  More specifically,  I am thankful for The Cleveland Brown Show.

This show has me in stitches today and I would like to share one of my favorite moments... that reminds me of myself. lol  I did find a better vid of this clip but I love the guy's laughter as he is recording it.  And the part that reminded me the most of myself was when he steps on the treadmill and is like "Ooh this isn't so bad"... and then Holt turns it on! LOL 

 Day 3:  I am thankful for the brief escape that Netflix provides those of us with chronic pain.

zZzzZzzZzz

I have been so BLAH! this week, I've been struggling with a fibro flare-up and majorly stressed at work.  It's barely Saturday afternoon and I am so exhausted I could easily sleep until Monday.  


I will wake up for a few minutes then the next thing I know, I'm waking up again.  


I think I'm developing narcolep-zzzzzz.  lol 

This animated picture made me laugh but at the same time... I definitely know how the sleeping cat feels!

Fibro Fog Strikes Again

Oh yeah, it's been one of those days...