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
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.
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....
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.
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.
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!
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!
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....
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?
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.
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...
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.
There are so many articles out there with advice on how to exercise with fibro. This one, for example, and also there isthis 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.
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!
