Lupus/Autoimmune Disease Awareness Month

Fighting vicious invisible and painful autoimmune diseases are very hard and a daily struggle with pain, fatigue, & unpredictability. They are isolating and make it so hard to make plans as we never know when we will be slammed and with what. Just because you can’t see the illness or disability doesn’t mean it’s not there. For the most part we try and hide it. I can guess if you looked in our eyes, you’d see the pain.

Autoimmune Disease
Living with Autoimmune Disease/Invisible Illness

Rainbows & Unicorns,

CrankyPants

Why?

Why do we who live with invisible diseases that cause excruciating pain, feel we have to live most of our lives hiding our pain? Who are we protecting ourselves or others?

We want the word out, and a cure to be found so why do we hide?

Sweeping things under the carpet isn’t going to bring about change or help to find a cure.

What if we got real? Real honest with ourselves and with others?

Those who would leave because we were real, aren’t worth having in our lives.

We need people who will stand by us when things get bad, when we have to say no over and over to invites because we’re too sick or in too much pain to go.

Why hide?

Why?

Shimmering lights & Being real,

CrankyPants

Enbrel Update

I hope everyone enjoyed their Christmas and had some low pain days. Mr. CrankyPants and I have had a great holiday. We had no obligations to be anywhere which is nice. We just cooked ourselves a turkey dinner with all the trimmings and have been eating it since. Yummy.

As far as my Enbrel endeavors, I’ve done two injections now and I do my third tomorrow (Friday).

The first one went well with no complications. It really didn’t hurt just felt it a bit. I did get a bit of a metallic taste in my mouth after but that was no big deal.  I haven’t gotten sick from it like the other meds.

The second shot was pretty much the same until today. Six days later..

I noticed a bit of a red rash this morning on my leg near where I did the last injection. I didn’t think a whole lot of it. I thought it might have been my coffee cup sitting on my leg earlier. So I forgot about it and went on with my day.

Tonight changing into my p.j’s I was reminded of it. In fact I couldn’t miss it. It got a lot bigger, a very red raised rash. A massive welt.

Now I was told I could get some reaction after the fact with this med, but I guess I wasn’t thinking 6 days after the fact, and when they said I could get a little redness, itching and irritation around the injection sight; I wasn’t thinking it would be grapefruit sized.

So if it’s no different tomorrow, I’ll just touch base with my biologic nurse and ask her if it’s normal. It’s not itchy just tender like a bruise. My hope is that it will settle down on it’s own.

I wonder if tomorrow’s injection will bring with it another welt at some point. How pretty. lol

I do have to say I’ve noticed that I’m feeling less pain in my wrists. Given the nature of lupus/RA it could be that the pain has just moved somewhere else for a time, but it could be that the Enbrel is making a difference. It gives me a bit of hope. I know it seems like a small thing, but I was able to open a sealed pop bottle. I couldn’t even open an unsealed one prior to Enbrel.

As far as the crohns/colitis symptoms, they’re not a whole lot different. The pain varies sometimes better sometimes worse but with a bit more better then worse over Christmas thankfully. I’m still living on Imodium to control it. I’m sure it’s not helping eating turkey dinners, but I’m not ready to give that up yet. I love them so.

Happy New Year everyone! Wouldn’t it be great if the New Year brought with it a cure?! We can hope right?!

Twinkling Stars & Sunshine,

CrankyPants

 

 

I Did It!

I gave myself my first Enbrel shot this evening and there was nothing to it. I felt it a bit but not enough to make me worry about the next time. (In a week). So hopefully I’m on the road to feeling better but it remains to be seen.

Enbrel suppresses your immune system so you’re more susceptible to infections, colds and flues so there’s that. The other meds I was on prior did the same thing and I did okay but, I think this does it to a greater degree.

I need to be as careful as I can about staying away from anyone who I know is sick. Having said that I’m also not going to fear going out and doing things.

A small victory for me getting over this hurdle today. Mr. CrankyPants had the day off too so that was nice.

Oh the one thing I noticed with this med is a metallic taste after I did the injection. I’ve not heard of that side effect with this med. but hey maybe I’m a ground breaker. lol I have been before.

Fun Days & Easy Needles,

CrankyPants

Granny Cranky Pants

I hate this disease (MCTD) with a passion. In short it hurts, it ambushes, it kills, it causes you to suffer in silence because no one can see it therefore no one can believe it. It takes away your social life, or life in general.

I feel like a granny caught in an 40 something body. I wake up most days never knowing how the disease is going to attack me today. Walking hurts, my hands, wrists, shoulders, neck, elbows and back hurt. I can’t do what most others my age do. Oh and I can’t work. Some days the pain gets so bad that I have involuntary tears streaming down my face.

Did you know that these diseases attack your organs too? Oh yes. I can’t breath often, my kidneys are at risk, and I lost my bladder years ago which now they tell me is from this disease. We can’t forget neurological so let’s add in Epilepsy for good measure.

And just when I thought I was done, then there’s Raynaud’s. My fingers love to turn blue and white like I have frost bite. What the hell?! Cold and or stress causes that.

Don’t get me started on the medical world. That’s another post or maybe 100. All I’ll say on that right now is that they’re clueless.

I’m sick and tired of being sick and tired. I hate you disease. Go back to hell where you came from.

This Cranky Pants rant brought to by none other than Cranky Pants. Surprised?

If anyone else needs a judgement free place to post a Cranky Pants vent visit my contact page and I’ll get you set up.

Rainbows and twinkling stars,

CrankyPants