The content in this blog is based on my experiences and the guidance I have received from my Care Team determined by my individual and evolving needs. Before beginning, trying, or experimenting with anything mentioned in this blog, you
MUST CONSULT A PHYSICIAN!!

Saturday, December 6, 2014

Wake up with me!

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? 

 

Sunday, August 3, 2014

Whew!


This has been me all summer :-/

Thank God for air conditioning! 


Friday, July 4, 2014

July 4th

 
 
Happy Independence Day, America!

Thursday, July 3, 2014

Home made Fireworks



Wishing you and your family a very 
happy (and safe) 4th of July.



 

Saturday, June 28, 2014

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!

 

Tuesday, June 10, 2014

Daily Clicks

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.
 
 
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. 

 

Saturday, June 7, 2014

Hand Writing

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.

Thursday, June 5, 2014

DIY Faux Lashes

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!
 

Wednesday, April 23, 2014

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
  
 

Tuesday, April 22, 2014

Thursday, April 10, 2014

Tap my what?!

I just got out of the hospital and am slowly recovering.  I'm not exactly sure what was or is going on, I'm still kind of out of it. 

What began Sunday night as the worst migraine of my entire life, a #16 on the 1-10 pain scale, dry-heaving vomiting and extreme dizziness ended up with me being admitted to the Hospital with Idiopathic Intracranial Hypertension or Pseudo Tumor Cerebri, which I will refer to as IIH in the labels section of my blog. 

I met an excellent Neurologist who has agreed to take my case.  Under his recommendation, I will have a new Eye Doctor that will need to see me every two months to monitor the pressure via my dilated eyes.  (I'm not looking forward to that, I dislike having my eyes dilated!)  (Does anyone else who has sugar issues have a spike in blood glucose during/after having eyes dilated? Or is that just me?)



The treatment is a lower lumbar spine tap type thing - which is very painful!  Oh and a 1000gm daily dose of a heavy duty diuretic that gives me muscle cramps will keep the fluid from coming back as quickly.  But according to the Doctors, another lumbar puncture will be in my future. :(

Anyway, fast forward several days, and here I am.

So I will be researching and learning as I go, much like we all do from time to time. 

Please keep me in your prayers/good thoughts.

Thanks!

 

Wednesday, April 2, 2014

Beach Break!

Take a mental vacation with me!  Come on, it'll be fun.  You won't even need sunscreen... but if you smear a touch of banana boat on your face it feels (and smells) more real!

Turn up your speakers and take off your shoes, close your eyes and just breath... taking in the soothing sounds of the ocean...

 


Ahhhh.... that hits the spot... 
 
Ten more minutes of this and it'll be time to go back to work!
 
Best use of my lunch break - ever!
 
 

Sunday, March 16, 2014

Personality Test

Let your choice of colors and shapes tell you more about your personality!

Relax, look at the pictures and see which you are most attracted to. 
 
 
 
(The shapes/colors I picked are marked in red.)
 
 
 Personality Test Results:

1. Freedom loving
Freedom is important to you - nothing is worse than when you feel tied down. You may find you move jobs or location frequently because the idea of staying in one place too long unnerves you. The same can apply to relationships! People see you as fun loving, and you are. You attempt to enjoy life to the full, in accordance with the motto: "You only live once." You tend to attract less energetic people as friends or partners, like moths to a flame, they see you as the light. Careful they don't drain you! You are very curious and open about everything new and thrive on change. Quite simply, you are a breath of fresh air.


2. Independent and unconventional
Your lifestyle is highly individualistic. You do not follow the crowd, on the contrary, you seek to live according to your own ideas and convictions, even if this means swimming against the tide. You need a free and unattached life that allows you to determine your own course. You have an artistic bent in your work or leisure activities. Your urge for freedom sometimes causes you to do exactly the opposite of what is expected of you. You are rather unique, so don't bother comparing yourself to anyone else. Live life your way.

3. Sensitive and reflective
You are comfortable spending hours alone with your thoughts and rarely become bored. You dislike superficiality; you'd rather be alone than have to suffer through small talk. Your relationships with your friends are very strong, which gives you the inner tranquillity and harmony that you require. You love deeply but if someone betrays you it is next to impossible to forgive. You are an old soul, someone who has lived many times before and has seen it all. All you crave now is simplicity and the chance to focus your attention on a meaningful existence.


4. Down to earth and charming
You have a natural authentic charm, what you see is what you get. People admire you because you seem so 'together'. You have both feet planted firmly on the ground and they can depend on you. While others complicate their life with ifs and buts, you know your own mind. You provide security and space to those close to you. You are a rock, and although others may not tell you, you are the sun around which they revolve. You dislike superficiality and tend to be skeptical toward the whims of trends. Where others crash and burn, you motor on, quietly achieving all you need to do. You are a woman (or man) of substance.


5. Professional and self-assured
You take charge of your life, and place less faith in your luck and more in your own actions. You solve problems in a practical, uncomplicated manner. You take a realistic view of things in your daily life and tackle them without fuss. You are given responsibility at work, because people know that you can be depended upon. You project self-assurance to others. You are a born leader and organiser. Although you work well in a team, ideally you should be the one giving the orders. After all, you are usually right!

6. Peaceful and timeless
You are easy-going yet discreet. There is a timeless elegance about you (think Audrey Hepburn). You make friends effortlessly, yet enjoy your privacy and independence. You like to get away from it all and be alone from time to time to contemplate the meaning of life. You need space, so you escape to hideaways, but you are not a loner. You are at peace with yourself and the world, and you appreciate life and what this world has to offer. You have a strong life purpose and when you discover it, you project your personal brand of magic on the world.

7. Cultured and classical
Cultured and sophisticated you value the things money can't necessarily buy - good conversation, original ideas, music and the arts. You have a fair mind and can see both sides of an argument. You rarely let emotions get the better of you, preferring to assess situations rationally. Calm, logical and yet compassionate and kind. You have 'old-fashioned' principles, which at heart make you a real lady (or gentleman). A timeless, vintage classic - the sort of person everyone secretly admires and likes to copy.

8. Sensitive and spiritual
You are a highly sensitive and spiritual person. You refuse to see life only from a rational view point. You have great intuition and trust your feelings. You must have dreams to aspire towards or you won't feel happy. You like to improve yourself, and in so doing make a difference in the world - even if only in little ways. You find it hard to understand people who are only guided rationality. You form true relationships with open souls, people who know there is more to life than we can touch, see or hear. Your psychic sense is highly evolved, trust it and work with it.

9. Dynamic and sparkly
You are a mover and a shaker! You are willing to take risks in return for interesting and varied work. Routine tends to have a paralysing effect on you. Being stuck behind a desk 9-5 would destroy your soul and enthusiasm for life. You need to be given the chance to express your ideas and put them into action. You have a rainbow personality, and can cheer others up, even on the gloomiest of days. If you ever feel you have lost your sparkle it is because the situation you find yourself in is not right for you. Follow your enthusiasm, even if it means you chop and change for years. The journey is as important as the destination.

Wednesday, March 5, 2014

End the R-Word!

I pledge #Respect thru my words & actions. Will you? Pledge now to create communities of inclusion for people with Intellectual Disabilities  http://r-word.org
r-word.org

Thursday, February 13, 2014

What the Heck?!

I'm stressing.

No wait, I am freaking out!!



My job is doing away with our health insurance and forcing us to pick up ObamaCare.  I don't have a choice in this, so normally I don't sweat things I have no control over... but this is my health insurance.  This decision will dictate how my health is managed and could change the course of my quality of life.  If I pick the wrong plan, I could lose more than my doctors - I could end up with some med school drop-out who believes Fibro is imaginary! 

I've already been to one crackpot who told me that my "issues are depressive in nature, Amber, you need to get yourself married and have children".  He explained that the constant pain was my "body rebelling against my choice of a selfish lifestyle because I should be having children by now" - btw he meant being single.  Going through that once was more than enough for my lifetime - thankyouverymuch.

I've done my part!  I have found a way to juggle chronic pain, endless fatigue, and never ending appointments so I can maintain a real life full time adult job with benefits.  And now, because my benefits don't match up with the new government standards - I'm losing them.  Not only am I losing those benefits that I have worked my @$$ off for - and sacrificed so much of my quality of life to be able to maintain - but I will be awarded some crackerjack healthcare option.  Oh and that isn't all, assistance will be based on your income level.  That makes sense in some instances, but what about those of us who are barely making it on what we make??  So now, not only does my taxes go to support other people who are living high on the hog from the government assistance I am providing them - but now I have to struggle to pay for my own health care.  My cost will be around $300 a month - PLUS copays!!  W-T-Heck Obama?!  I can't afford it - HOW am I supposed to afford it?  And the government will not help me pay for this insurance because I am a responsible adult and do not have children I cannot support and because of this very job that is paying for all of their government aid - I am getting screwed.  Screwed for being a law abiding, hard working, barely-living-within-my-means American.


 

Thursday, January 23, 2014

Funny

Hmmm that looks so easy, even I can do it!! lol




Swimsuit season here I come! ha!


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