Fibro of Oz

I'm a Librocubicularist, are you?

2017-08-20T15:43:00.000-04:00

As many other knows, the emotional pain of a chronic illness is almost as bad as the physical. So far, 2017 has been intensely difficult. I'm working a tremendous amount, sometimes to try and distract myself to my condition. On my days off, in an attempt to everything else - I read a lot.. usually in bed with a heating pad or an electric blanket.

I love the escape that comes with a new book, characters who become my friends, stories that ignite my imagination and divert my mind away from my current state. Even with my fibro fog - GoodReads helps me stay on track with not only what I have read but what I wanted to read next.

GoodReads.com

... huh?

2017-01-03T13:10:00.000-05:00

The struggle is real.

Extreme Fatigue

2016-10-28T07:33:00.000-04:00

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....

30-what!?

2016-08-09T23:10:00.000-04:00

Happy Birthday to me.

Side Effects of Diamox

2016-07-03T15:38:00.000-04:00

A week ago or so, I had a lower lumbar puncture done to release the pressure of the build up of spinal fluid on my brain (PTC or IIH). Apparently my pressure levels were much higher than they should have been so the Doctor changed my dose of acetazolamide - which is causing my body to expel fluids in.... a different fashion than it did previously. Not to be gross but it gives me really bad diarrhea. I spoke with my doctor and he said that it could be my body's way of pushing out more fluids/toxins or it could be a side-effect. So I've been reaching out on twitter to see if anyone else taking Diamox has the similar issue.

If you have - or even if you haven't - please hit up the comments and let me know.

Thanks.

Happy St Patrick's Day

2016-03-17T15:15:00.003-04:00

This song always brings a tear to my eye...

May God give you...
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh, a sweet song,
And an answer for each prayer.

Happy St Patrick's Day Everyone.

May the luck of the Irish

be with you all year long.

Brrr

2016-02-11T08:58:00.000-05:00

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!

Quiz

2015-04-13T17:02:00.004-04:00

I seen this link on facebook and thought I would see what my name means... I do like to learn new things and continue to try and learn new things.... I am friendly, polite, and have solid values. Pretty good guess there Mr Quiz!

Find out what your name means here!

silence

2015-04-12T15:49:00.000-04:00

banana?

2015-04-10T19:05:00.000-04:00

The fatigue is still present but here comes the pain... swollen joints... muscle cramps... pressure headache... I've taken it easy this week, I've drank a lot of water and rested as much as possible trying to hold off this flare... but with the changes in weather, it is happening anyway...

No matter what I throw at my fibro, this is how they respond....

So I have learned to accepted them.

I rest and hydrate, and pray until it is over.

extreme fatigue

2015-04-09T10:42:00.000-04:00

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??

Helpful Tip or Two

2015-04-08T17:01:00.002-04:00

Is it just me or are most people obsessed with "life hacks"? I'm seeing so many articles/pins about "easy kitchen hacks", "unforgettable life hacks", and even "easy spoonie hacks"! I don't have any tips, tricks, or magic moves to make this life any easier.... But I do have a couple hints that I have found helpful along the way I would like to share with my readers.

Tip #1:

One of the biggest things I have learned along the way is to contact the hospital, doctor's office, mall, hotel, etc and ask about any Guest Services offered. I do this before any new appointment or any new location. I don't mean something like fluffing my towels - but I ask about things like valet parking, guest transport assistance, etc. If you aren't sure where to start with asking if these services are available, talk to your reception workers at the doctor's office. Or call the mall's customer service professionals.

I am extremely blessed that the facility where most of my medical appointments are located has valet parking (disability tags park free or your doctor's office can validate the card so you can park free) and it also has guest transport assistance (which means on those days I'm unable to physically walk to my appointment they have someone who will take me in a wheelchair). It doesn't hurt to ask, all they can do is say that nothing of that nature is available.

Tip #2:

My other big tip is to really take the time to beef up your contact information on your doctor's in your cell phone. I include things like the Doctor's name, number, specialty, address (in case I forget where they are located), what elevator/suite number, and sometimes the name of my favorite nurse at the office. Here is an example of what I mean, it is for Dr Enjeti who is my Pulmonologist. And yes, this is a real screenshot from my iphone! haha I constantly found myself getting lost in the hospital or forgetting which elevator got me to which doctor, so by beefing up the contact information I am more prepared for each appointment.

On good days I hate asking for help because I have to ask for assistance on bad days. By beefing up the contacts, now I know exactly where I am going :)

That's all I have tip wise! Well except for the normal things... But that's another blog post.

Pinterest's Advice

2015-04-06T08:33:00.000-04:00

Browsing on Pinterest this afternoon, I found a couple links that were interesting.

I don't really think I would have any "Survival Guide" style advice to give anyone, at least not today.

Speak up please, I can't hear you clearly...

2015-04-01T21:45:00.000-04:00

This has been all day, so much is going on around me and I can't help but listen in.... Asthma is so bad that I can't do much talking, but my ears are working fine...

Oh my what I have learned....

Prednisone Blues

2015-03-27T16:05:00.000-04:00

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.

Exercising with Fibromyalgia

2015-02-15T14:41:00.000-05:00

There are so many articles out there with advice on how to exercise with fibro. This one, for example, and also there is this one, But out of all of the ones I have read, this one is my favorite. Giving actual examples of low impact exercises that definitely have a "beginners" level helps me more than any motivational "feel the burn" mumbo-jumbo out there. Of the exercises it lists, I am curious about the following: walking, swimming, yoga and tai-chi.

I am the opposite of flexible, but I have had an interest in yoga for a long time now. I've experimented with various youtube videos that claim to be super-easy, beginners-only, fibro-friendly, and even fatgirl-friendly... but I have had no luck in finding something that didn't make me stick out like a sore thumb. And then, I read this article about the different yoga styles available.

It gives me hope that I might be able to find the right thing for me.

Wake up with me!

2014-12-06T13:12:00.000-05:00

I see so many videos on youtube where posters are saying "Wake up with me!" I thought it would be cute to do a blog post so ya'll can wake up with me :) This way, you'll get a bit of my routine without me having to fix my hair first. haha

Disclaimer: I am not a morning person. I am also not a physician.

This morning, I woke up around 11am and found myself stretching just like the bear in the cartoon above. :) And yes, I had the same thought! Wishing I could cross "exercise" off of my list for the day, but knowing that it doesn't count.

The first thing I do when I wake up is go to the bathroom. While I am in there, I wash my face and hands, and splash a LOT of cold water on my face to try and bring down the sleep-swell I seem to have first thing every morning. When I get back to my bedroom, I sit down on the side of the bed and check my sugar. While that is calculating, I drink either a bottle of water or the rest of my Gatorade-2 (which has a lot less carbs than regular Gatorade).

Next, I take my morning medications.

Currently, I am taking the following:
- The 2 red pills are Vitamin B12
- Oblong yellow pill is Zofran
- Oblong orangey pill is a multivitamin (petite)
- Beige soft gel is CoQ10
- Large white oblong pill is Metformin
- The 4 round white tablets are Diamox
- The small white round tablet is Tramadol
- The grey capsule is Fioricet. I don't take this one every day, but two days and then skip a day.

If it is a weekday morning, I will take my Zofran and then get into the shower. After my morning shower, I will take the rest of my medication - except for the Diamox. Diamox effects my body strongly and quickly, so I take it once I get to work or I would have to make a dozen bathroom stops during the hour's commute.

I take the vitamins for energy, B12 and CoQ10 together are the only thing that can lift me out of the fatigue for a couple of hours.

As this is a weekend morning, I will fix myself a quick bite for breakfast, grab another drink, and mosey back to my bedroom to either read, crochet, or watch some Netflix. I plan on doing a mix of that until my sister and brother in law are fully woke, and we all decide what we are doing for the day. He has to work so I'm hoping it is just some sisterly bonding via vegging - especially since it is freezing in Tennessee today!!

Thank you for waking up with me today!

What routines do you follow?

Whew!

2014-08-03T15:36:00.000-04:00

This has been me all summer :-/

Thank God for air conditioning!

July 4th

2014-07-04T17:07:00.000-04:00

Happy Independence Day, America!

Home made Fireworks

2014-07-03T20:52:00.000-04:00

Wishing you and your family a very

happy (and safe) 4th of July.

Waterpark Win!

2014-06-28T23:53:00.000-04:00

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!

Daily Clicks

2014-06-10T22:15:00.000-04:00

No matter how crappy I am feeling or how exhausted I am, I always take a few minutes and do my daily clicks. I'm torn between believing that these daily clicks make a difference and that its just some kind of guilt-triggered-spam that tricks us all into looking at advertising. Either way, I always feel a smidgen better after going through my clicks. And on no-spoon-days, I'll take that smidgen of improvement happily.

If you are curious about The Greater Good, click here to learn who they are and what they do.

It used to take me a little longer because I had to jump from bookmark to bookmark to bookmark - but now the actual layout of the page makes it so much easier!

Are you interested in clicking some free help their way? I have laid out some simple step by step instructions :)

1. Go to THIS PAGE

2. Look for this logo on the upper left hand side.

3. Look to the right, one icon at a time, and it shows all the other pages you can go to make a difference just by clicking! Its totally free.

4. Under the row of icons, you will see a bar that says something like "click here to offer..." whatever page you are on. Click that bar. That's it! You just helped someone else :)

This is an example of what the page will look like when you click on the different sites you can help. This picture may be fuzzy, so please feel free to click on it to make it bigger so it will be clear. :) Oh and my paint program skills aren't that great lol but hopefully it will help you get the idea that I am talking about.

I know this sounds cheesy but doing these daily clicks - even on days I don't feel good, especially on days I feel really bad, help me feel a little less sorry for myself... because I am taking a moment to do something for others. That helps me give myself permission to rest as much as I need to, because I have done what I can do for others.

Hand Writing

2014-06-07T17:26:00.000-04:00

A friend of mine at work loves to talk about hand writing analysis and I think its interesting. Not so much that I would change how I write or how I am - but enough to be super curious about what someone who didn't know me would say about me - based solely on my hand writing style. Imagine my surprise when I see this video! I was excited (to say the least) and will share some of what this video says about me, based on my hand writing. I used things I had on my desk that I've written over the last few weeks to take samples from, so that it is a true handwriting sample :)

According to the video, I am:

Outgoing
People orientated
Creative
Comfortable in my own skin

What does the video say about you? Do you agree or disagree? Please share your experiences, thoughts, critics in the comments below.

DIY Faux Lashes

2014-06-05T19:17:00.000-04:00

I love the look of false lashes but I don't have the steady hand required for wearing them - nor do I have the extra money it takes to get them. A friend of mine on Facebook posted this link and it sounds so interesting!

DIY Faux Lashes (using baby powder!)

I definitely want to try it!

Snoring Beauty

2014-04-23T15:46:00.000-04:00

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