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! 

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.  

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!

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.

Mental Beach Getaway

After an eventful few days, I need some serious down time... This is my favorite youtube video that helps me relax and drift away from the world.  

Not even my exhausting pain can reach me here.  

While I am positive that an actual trip to the beach would work wonders on my aches and fatigue - this is the next best thing... Plus I don't have to wear sunscreen! :)

Advice

Best advice I've gotten all day.

Now That We're All Booming...

This has got to be one of my favorite scenes from the Golden Girls.  For anyone who hasn't seen it, the Girls are babysitting for a friend and the baby refuses to go to sleep!  So Rose voices one of her many St. Olaf ideas on how to soothe the crying baby.... This is her plan in action. 

I have been having a lot of problems sleeping lately.  I'm not sure what is going on or how to even explain it... but I am confident that others who are either chronically sick or grieving can definitely relate.... Unfortunately, I don't have any tricks or tips on how to handle these sleepless nights....  I imagine being serenaded by the Golden Girls might not put me to sleep but I am confident it would make me smile... and maybe feel less alone during these isolating nights... 

Who? Who? Who?

I need this on a t-shirt today.  Between the tests this morning making me sick (upper GI and a ton of blood work) and my fibro fog kicking in (who are you talking about? what? who?) - my day may go easier if I just pretend to be an owl.  I wouldn't mind being propped up somewhere safe, sleeping the day away...

I've had a history of not keeping meals down for a long time now, at least a few years... At the time, I was told it was a combination of my fibro and stress.  Now the doctors are not so sure anymore.  That's why I needed the upper GI done - but I got so sick during it that they had to cancel it!  I hate being sick like that in public but it was oddly satisfying... The x-ray tech was giving me one of those looks - you know the ones we get when someone thinking "yeah right you aren’t sick you are just lazy".  Except her face said "yeah right, a fat girl that can't keep food down. Funny."  So in that sense, even though it was embarrassing, I'm kind of glad that I proved her look wrong.  Then again, the hang-over feeling afterwards - I'm not so sure it was worth it.  (Secretly I will say that it was but I don't want to appear catty.) 

So all of that mess for nothing.  Then the doctor also ordered a ton of blood work (8 vials of blood!) and I don't do well once they take 4.  So I was sick again. 

<sarcasm> So far, this Monday morning is off to a "great" start.  </sarcasm>

Maybe I'll just look for a perch in a tree somewhere out back... take a nap :)

Spoonie Math Equation

Here is the word problem.


A woman named Amber has fibromyalgia, lupus, and several complications of that combination.  She has a stressful job where she is responsible for numerous things.  Amber also has a sick parent who she is taking care of, with the assistance of her sister.  Amber and her family live in Tennessee, which is having a major shift in temperatures and weather - dropping from 80* one day to 45 at night, mixing in some cold rain and high winds.  What happens next?  


Did you guess a series of intense asthma attack that propels Amber into a very rough chest cold and laryngitis?  


I didn't either, but that is what happened.  


The string of asthma attacks will take a few days to get over, but thankfully I have my inhalers, a nebulizer, a steroid refill, and some mixed Albuterol solution.


Sometimes being a Spoonie is tough, looking around your house at the embarrassing collection of medical equipment and medications... Other times, like right now, it is like having access to your own private pharmacy!  Which has definitely saved me a ton of money on copays!! 

Don't worry about me!  I'll be back to blowing down houses in no time :) 

I was minding my own business until...

Have you ever been walking around, minding your own business, when BAM a fibro symptom hits you out of no where?  I imagine that is how this penguin feels.  



I'm having some of those moments today... achey muscles that make me lose my train of thought, swollen joints making it harder to write, and enough of a headache to keep me uncomfortable.  

Blah, fibro! 

Video: What Fibro Feels Like

Thank you for sharing this video, 

it speaks volumes of how I feel! 

Not by Strength - but by Perseverance

In the confrontation between the stream and the rock, 

the stream always wins -
not by strength 

but by perseverance. 

- H. Jackson Brown

I've heard this expression a dozen times but this morning something inside of me clicked.  The rocks of my path lately have been holding me back, when what I need to do is relax and allow myself to flow around them.  Yes the barriers may slow me down but eventually I will get around them... 


So now I am going to try to breathe through the stress, relax during the drama, and imagine myself - my true self - flowing around these issues, skimming past the flare up pains, slipping past the work headaches... to pool back into myself on the other side... 


Will keep you posted on its success.  

It's a bird, it's a plane, its my Chiropractor!

A new pain has struck, bad #10 on the scale of pain.  It could be a fibro flare-up because of weather changing.  Emergency Medical Personal thought I was drug seeking.


Even my own Doctor wasn't sure how much of this is fibro and what is new.  Sometimes I'm not sure she believes in fibro or if she believes it is all weight related.  


I cried myself to sleep several nights from the intensity of this pain.  I can't walk unassisted, barely stand up enough to see where I'm going.  Yet am told it is "part of fibro".  I know enough about fibro to know that this is very different. 


Pain pills numb my brain enough that I can sleep a little.  It doesn't really ease the pain as much as it makes it easier for me to mentally disconnect from it. 

Finally my Chiropractor figured it out!  God bless him!  He discovered that I have pinched a nerve in my lower back.  He worked on it some and for the first time in a few days, I have non-medicated relief.  Prednisone, cold packs, and his TENS unit to the rescue!  With any luck, tomorrow I will be able to go back to the office :)  


It is another day I thank God for the support of my family. 

Natural Pain Relievers

Over the last few months I have began to look forward to the newsletters in my inbox from IVillage.  This morning, I was very happy to see an email about relieving pain naturally.  I'm up for anything (at least once) so I thought I would browse through and share some of the highlights here.

The first option was Yoga for pain relief.  The article mentions a lot of different types of pain, from hangovers to pms to sinus pressure.  For me, what helps the most are the anxiety breathing and backache poses.  I'm not flexible AT ALL (picture the Tin Man when he started getting oiled, that would totally looked like me if I stopped coloring my grey!) and yet I found a way to do these positions comfortably.   


The next option was 20 Natural Pain Remedies from your Kitchen.  I have to admit that at first I wasn't too impressed with what it offered, but when I seen that ‘fresh pineapple daily can cut painful bloating within 72 hours’ that definitely got my attention!  As anyone who takes Neurotin will tell you, I'm bloating up like a fish!  And I love fresh pineapple, so if it works it will be win-win!  


Another thing that I do to ease my pain is try to distract my mind away from it.  It isn't always easy.  The newsletter had an  article, Surprising Ways to Ease Pain, lists some of my favorite methods of  redirecting my attention away from the pain.


What do you do to ease your pain?  Do you have any natural or mental tricks?  Please share your experiences in the comments below!
  

Hopeful

Hope is like a bird that senses the dawn and carefully starts to sing while it is still dark.  - Anonymous

Not feeling that great today, intense muscle pain/cramping, stiff joints, dizzy and headachey.  Still hoping that the weekend will improve, tomorrow I will feel better... I hope.

Sickie Challenge: Fibro Friendliness in Nine Products

Thank you Monique for developing the 10 Day Sickie Challenge! For more information on how you too can take part in this experience, get more information here.

Nine Products that Make my Life Fibro-Friendly

1. Handheld showerhead – for days that I need a hot water massage on my back or am too sore to bend very much.  I love how independent I feel using the hand held, even on bad pain days.

2. Crest Spin brush – for days my shoulders/hands/back hurts too bad to brush my teeth on my own.

3. Easy Feet foot scrubber/massager – This feels amazing no matter how I’m feeling! Sitting on the side of the tub, this dandy little thing scrubs my feet from tiptoes to the back of my heel.  Absolutely worth more than the $10 that it sells for!!

4. Blackberry / Google Calendar – Not only does this keep up with work deadlines, family birth dates, and my schedule, it also keeps me in contact with my coworkers, family, and friends via text messages, twitter, facebook, email, etc. I feel totally lost without my blackberry.

5. Icy Hot Spray and Banana Boat's Spray on Sunscreen – Thank God for these inventions!  I am single, so I don't have the helpful hands of a spouse at my disposal when it comes to either putting on soothing muscle rub on my aches and pains, or even protecting my skin in those places pain will not let me reach with sunblock.  While some say aresol sprays are bad for the environment, they are a welcomed assistance in my world.  

6. Canvas Tote Bags for groceries – Find out more here

7. Facial Wipes – I try to be as skin-health conscious as possible, which includes not going to sleep with a dirty face. This wipes are a blessing! Even on bad days, I can save some pain by cleaning my face with a wipe.

8. Electric Blanket – I’m a good sized girl, tall and curvy. So an average heating pad will not cut it during muscle spasms that last all night long. I have discovered that an electric blanket is an excellent alternative!

9. Post it Notes – Fibro fog anyone? These little miracles save my life at work! This may not be a product I use at home very often but from grocery lists to reminding me to stop by the bank, they are amazing!

Quick Update

As you can see, it's been a while since I have been able to truly sit down and post.  It's not that I don't want to, its just that by the time I have a few moments to share my life with ya'll - I'm too exhausted to think.  Literally.

 

Please accept my apologies, but between fibro flareups, falling victim to a pain patch, my Mom being sick, staying swamped at work (got that promotion!), and fatigued beyond my wildest imagination... my cup is long past overflowing.

I will be back with ya'll soon (I hope!) or at least as soon as possible.  Thank you for understanding and your patience. 

And thank you, readers, for your continued support! 

-Facepalm- Thanks Fibro Fog

Its outrageously hot for June in Tennessee (98*) and I don't do well when its over a balmy breezy 70*.  Needless to say, I don't handle this heat well at all. 

Because my truck doesn't have A/C, my Mom picked me up after work today.  She pulls up next to the door, and I hurry out with my stuff.  I open the back door and throw everything inside then sit down in the front seat.  It's hotter in the car than it is outside!  I say "Mom, why don't you have the air on, its hot" and look over... to the man behind the driver's seat.  His response was "Lady, you're in the wrong car" and began laughing.  I leaped out of the car and snatched my stuff out, I don't even remember if I apologized or not!  

Can we just say that everyone watching had a good laugh and the next day, it was found just as funny when I recapped my adventures to coworkers and on twitter. 

Boy, was my face red. 

Thank you, Fibro-Fog.  

Spoonies Caring for Spoonies

Many that know me know that I live with my Mom.  Circumstances with a previous job and my health brought me back to my parent's home a few months before my Dad began getting sick.  I'm very blessed to have been able to be there to help with him and support my Mom... It's also been good for me too as I have support on bad Fibro/Lupus days where I'm feeling puny.  

Mom has been sick lately and I've been in a month long flare (which explains my silence on the blog), so we have been relying on each other to make it through.  I am happy to be able to be home to take care of my Mom while she struggles with her disabilities, not only does she need me but it also gives me a perspective of what it is like to care for someone full time that has disabilities.  These experiences have taught me a valuable lesson, not to take things for granted.  True, my condition has already taught me to enjoy the small things, find joy in everyday activities, and to treasure each good moment I have... but I don’t take anyone’s kindness for granted now... On the other side, it has made me a little skeptical of anyone who willingly would take on a relationship with someone with chronic illness... why would you sign up for this roller coaster if you had a more sane option?  

As frustrating as my lack of energy or ability to know how I feel later is frustrating to me, it is equally frustrating as a care giver.  I hope that my spoonie friends do not take advantage of those who assist in maintaining the quality of their lives, despite illnesses.

This post is all flustered, fog is rolling in and the pain is getting to me.  On my way to bed, have a blessed night.