Lupus, From The Beginning

My life from diagnosis and beyond

Chillin’ Out!

The weather in my neck of the woods is cold and rainy, battling a flare that brought back the pain of Trigeminal Neuralgia I hadn’t experienced in 5 years. So with the curtains drawn, I have retreated to the sofa, with my iPad, for quality time – frequent naps, some book reading, maximum lounging taking place today.

I’ll resume my usual routine tomorrow.

Gotta go recharge my batteries!

Another Morning Reflection

Trying to get my day started, even though I’ve up for the past 3 hours.

My mind is full of the things I need to get completed today, and some of the things I want to do today;

None of which is rest.  That may change though since allergy season is again making my life miserable, then I’ll be forced to sit still long enough to stop sneezing and blowing my nose.

Which reminds me, I need to stock up on tissue while I’m out doing errands today.

I have a feeling that everything I do today will be done in baby steps; I’ve always been a morning person, but I’m definitely not feeling it THIS morning healthwise.

However, I am feeling grateful today, and that’s always a good thing.

Be well, or as Don Cornelius would say, here’s wishing you peace, love, and soul!

Trying To Be A Good Boy

Last Friday, as far as my Lupus journey goes, was a bad day; for some reason, my workspace seemed a bit brighter than normal, not to mention it was a sunny day, and I was nauseous all day long, with a headache that would not go away no matter how much aspirin I took; two days later, I’m still battling that headache;

And nausea;
Joint pain;
And swollen joints too!

So I high tailed my butt to the pharmacy and got my scripts filled for my lupus cocktail – prednisone, plaquenil, Meloxicam, and snack food;

Just in case I got a serious case of the munchies.

But I’m more tired than hungry, so this weekend has been a weekend spent mostly in bed

Not very productive, but at least I’m somewhat rested for the week ahead.

Somewhat.

Thanks for reading, and if you have stumbled upon these pages recently, welcome and thanks for stopping by!

Sunday Morning Reflection

ImageThis past week, I’ve been hit with mouth ulcers and the chest pains and breathing difficulty that comes from my friend pleurisy – I’m also experiencing increased photo-sensitivity; all signs of a flare. Yep, springtime is coming, that time of the year when on one hand I can’t wait to get back into my yard and doing some serious gardening; on the other hand I have to remind myself that lupus limits my time outside, so I have to accomplish outside tasks in small bites.

Nevertheless, I have a laundry list of  outside tasks that absolutely must get done; not only for the curb appeal, but I’m setting myself up to eventually downsize and sell the home I’ve lived in for almost 10 years now.  I swore back then that I would never live in an apartment again; but I didn’t have lupus then – nor did I know what lupus was either.

In addition, my laundry list contain some professional goals I’ve made for myself that need to be done this summer, so in preparation I’m spending a lot of time reading and resting – I need all the energy I can muster for the next few months.

A few good long sleeved shirts;

Sunblock;

And a few good hats, not the fuddy-duddy ones that make me look older that I actually am though. 

BTW – for those who have stumbled upon these few words lately, thanks for stopping by!

 

Catching Up (again)

Between my last posting and now, I’ve lost one job and gained a new one, lost my health insurance too, luckily I was able to get medical care with the VA (being a veteran actually pays off for once!), and I am now on my second phase of the Lupus study drug (the Embody study) I’ve been on for close to 2 years now. Since I can’t afford the other medicines I am prescribed, the study drug is literally a life saver.

I’m receiving treatments once a week for 4 weeks, then I’m off for 8 weeks – and those 8 weeks are absolute hell for me.  My last treatment of 2013 was in October, and I spent the Thanksgiving and Christmas holidays in pain from head to toe and fatigued (yes, an 8 week-long flare); so you all know I was in HEAVEN when I went back for my treatments last month.  Now that I’m in the middle of my current 8 week off period, I’m spending most of my free time resting – need to conserve energy.  It seems to me during the 4 week treatment period, I am pretty much symptom free, and I am able to power through my busy days, but within a week or two after my last treatment, it starts to get pretty dicey for me health wise; right now it hurts just to type this.

But this is therapy for me, we live in a society where whining is discouraged, especially for men – so this becomes my journal of sorts, where I can put my thoughts down which spares me from not having to express them live and go through the eye rolls and the heavy sighs……..

For those who read these few words, I pray you are in the best of health (as far as Lupus will let you of course) and thanks for stopping by.

By the way, I’m planning to sign up for my first ever Lupus Walk – actually I’m pretty stoked about participating.  We need a cure for this thing – because Lupus sucks!

Big Time

 

 

 

Seven Consecutive Trips (Flare Season Begins Again)

For the past two years, the only way I could tell I was having a flare was almost constant trips to bathroom – and although this body of mine did not disappoint me yesterday as the title suggests, the prelude to flare season happened a bit differently this time: severe fatigue that lasted for days – it was so bad that I fell asleep in my car twice while driving it;

Staying awake while at work was a bit of a challenge during the week as well, today is the first day I didn’t feel the need to take a nap in the car during lunch, or skipping dinner and going straight to bed after leaving work. Getting a lot of rest is going to be important until this episode passes;

Trouble is, I like most busy people have a lot of things to do between the hours of leaving work for the weekend and going back to work after the weekend is over, getting some needed rest sounds more like a fantasy than reality.

Something tells me it’s going to take a hospital trip for me to rest; then it becomes a life or death necessity.

Tired

Just like the past 3 weeks, I’ve experienced the same symptoms: dizziness and extreme fatigue, unable to accomplish any tasks except to go to bed as soon as I get home. So I decided to jot down these few lines before I fall asleep.

Other than the fatigue which happens regularly, I’ve noticed that my blood pressure skyrockets during the infusion – the doctors have no answer as to why, but suggested that I get together with my PCP and let him know.

All I know is this: infusions and spring allergies don’t mix too well – since both takes a lot out of me; so for now, I’ll have to make the best of things