Jealousy

So I got hit with feeling jealousy over something I didn’t expect this week. As some of you may have read in an earlier post, Mr. CrankyPants brought home the sick this past week. It’s a wicked cold/flu that really doesn’t want to let up.

Mr. CrankyPants while still coughing and not 100%, is feeling better and back to work. I’m still pretty sick with it. Apparently it hangs on a long time. There are a few people at Mr. CrankyPants’ work that are going into their second week with it.

Don’t worry I’ll bring this around to my title.

I have to gage the norm with this from how long everyone else is sick because of my lupus an rheumatoid. You know, I couldn’t even fully tell when I was first getting sick with this because I never feel well and I always have fatigue. The only way I had a clue was that I was losing my voice and my throat felt funny, which technically could be the disease as well.

Anyway, where I’ve felt the jealousy is that Mr. CrankyPants will get better and move on. Although I will hopefully recover from this flu, I will never fully get better again. My illness will only progress. There in lies the jealousy.

Don’t get me wrong, I don’t wish illness on Mr. CrankyPants and I want to see him recover. It breaks my heart to watch him suffer, but it’s a harsh reality that I will only get sicker when all I want is to recover and move on.

I didn’t expect a flu to slam me with that emotion and the heartache that is attached. Autoimmune disease. The crappy gift that keeps on giving.

Have any of you ever felt that way?

Northern Lights & Moonlit Skies,

CrankyPants

 

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Starting Soon

So today I got a bit of surprise in the mail. I was getting candle supplies, so when I opened one of the boxes, my mind didn’t register what I was seeing at first. It didn’t look like candle supplies. It didn’t look like candle supplies because it wasn’t. Well what was it then?!

It’s always fun to get a package via mail but this isn’t the type of package most would want to get. Okay okay I’ll tell you. When you are approved for Enbrel, they send you a free kit. In the kit is a sharps container to dispose of the needles you give yourself once a week. They also send you a case with a small ice pack in it. Enbrel has to be kept cold so the case is for traveling.

Enbrel Kit
              Enbrel Kit

I’m grateful it’s free but it’s reality setting in that I’m about to start another new medication that I hope will help without nightmare side effects. It’s hard to hope to much. I find it hard because I’ve hoped so many times before.

While I’m pretty used to giving myself needles since I had to do intramuscular injections on me for methotrexate, and I had to do subcutaneous injections on me when years ago we went through IVF, I’m always nervous to start. I’ve heard this one can burn. I need to let it warm up to room temperature to help with that before I inject. I’ve always found don’t think, just do it helps me get it done. It’s usually never as bad as your mind thinks it will be hence the “don’t think” part.

I didn’t know this package was coming and I have no idea when the pen needles are coming. I would assume soon. You can bet your ass I looked to see if the needles were included in this package. Can’t say I wasn’t glad they weren’t yet. It will give me a bit more time to work my mind around this next phase.

I would like to video my first injection but my Hubby can’t stand watching me inject. I can’t inject I don’t think and video myself, so no promises made. I will try.

Have you had to give yourself injections for your autoimmune disease? If so how did you do with it?

Sun & Stars,

CrankyPants

 

It’s Relentless

These diseases are relentless I’m sure along with me, many of you feel like we never get a break. I wish I knew what it felt like to feel well again.

Yesterday I struggled to breathe all day. That’s been going on a week but yesterday was the worst. I’m in a lot more pain in many of my joints being off the meds now. Today, I’m still struggling to breathe on and off, my joint pain is bad, I feel fatigued and now I’m having gallbladder pain as well.

I just want to kick this diseases ass right back to the pit of hell where it came from.

This is the raw reality of living with autoimmune diseases. They ambush, they hurt like hell, they’re invisible, and they cause never ending sickness. For me as far as I know, Rheumatoid and Lupus are what I’m living with.

Last night I had to hand out candy without Hubby’s help as he worked late. Holding the candy bowl hurt, getting up to answer the door hurt, dealing with my out of sorts dog was exhausting. The disease takes the fun out of everything.

I’m so done with it, but it’s not done with me. 😦

Do any of you find you get worse at night? I’m worried today feeling this rough because evenings are always worse.

No sugar coating this illness. It sucks.

Side note it’s snowing so I’m trapped at home on top of it. I had so much I needed to get done today but I can’t make the long drive on icy roads. I’m too scared and it would hurt to much to drive.

I also for the third time in the process of going on Enbrel got grilled about my Rheumatoid Disease. This time from my Ins. Co. At least they’re approving the Enbrel. Sad how they only look at the joint issue of the disease and are oblivious to all the systemic deadly issues of it.

Sunnier Days & Halloween Candy,

CrankyPants

To work or Not to Work

This is a tough subject. I am on disability but I got disability after a three year battle long before I was diagnosed with MCTD. I fought for it because I have a urostomy that fills constantly and insanely fast. For those who may not know what that is, I don’t have a bladder. I lost my bladder many years ago to IC (Interstitial Cystitis). Now all these years later I’m told it was probably the autoimmune disease that caused it.

Anyway, for my own sanity I make and sell candles and melts. I use the sanity term loosely because as much as I love to make said candles, it causes me a huge amount of pain to do so. In the beginning it wasn’t so bad, but the disease is progressing very fast for me.

I also didn’t realize when I went into this, that I would have to go to craft shows and markets. Oh how I’ve always disliked them. Add in it does me in to be at them so I miss many. I was at the market for a time and that was not fun on so many levels but try doing it when chemo is hitting you hard. Yes they use chemo drugs to treat this disease.

I don’t know how much longer I will be able to continue unless I have help. Even then It would be really hard. However I don’t want this disease to beat me, and take away EVERYTHING that I love. I’ve lost so much already.

I’ve had this for many years but I’ve only been diagnosed in the last 3. I haven’t had any time to process all that’s happening because I’ve been to busy fighting the disease and fighting with doctors. Many many doctors.  Man don’t get me started on that. I may not be able to stop. Suffice it to say it’s been a long, hard, exhausting process that is never ending.

Just for extra shits and giggles, all but one of my specialists are a five hour drive one way. So whenever I need to see my Rheumie or Nephrologist, my Hubby has to take off work to drive me. Ten hours of driving and a Dr.’s appointment in one day. That would be exhausting for anyone let alone when we’re sick as hell.

Add in winter driving in the far north and well, it’s just not going to happen. Try to tell the Dr.’s that and then you’re being non compliant. Damned if you do, and damned if you don’t.

What’s your experience been?

Blue Skies & Unicorns,

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