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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CrankyPants Tweets Now

That’s right I caved. I Tweet. We’ll see how it goes. If you want to join me on Twitter, my handle is @ccrankypants. (Note the double “c”) Or you can find my feed on the side bar of my page.

Help me in bringing awareness to autoimmune disease. The more voices we have, the better.

Love you all.

Pain Free & Happy Days,

CrankyPants

A Video on Rheumatoid Arthritis

I prefer to call Rheumatoid Arthritis, Rheumatoid Disease because it’s so much more than arthritis. That is only one symptom of the disease as you’ll see in the video.

One more thing I want to say is that they stress how important it is to be diagnosed quickly. That’s so much easier said then done when it’s hard to get into Dr.’s, it’s often hard to get Dr.’s to listen. And it mimics other autoimmune diseases. It’s taken 4 years for me and my Rheumie still doesn’t fully believe her diagnosis. Yeah figure that one out. I’ve got sero negative RA and Mild lupus symptoms. Sero negative meaning aside from being ANA positive, my RA doesn’t show up in my blood work. At least yet. It could as things progress, but I have many of the other symptoms of RA going on. Blood work is not definitive.

Good Days & Warm Beaches,

CrankyPants

An Unwelcome Gift

Mr. CrankyPants brought home the sick. I swear he has the plague. Poor guy. It takes a lot to knock him off his feet. He’s not one who gets “the man flu.” He’s been known to go to work throwing up. So…He’s sick.

Guess what?

That’s right, now I think I’m getting it.

Weird thing is I never got any of his plagues when I was on immune suppressants. Now that I’m off them, I get the sick?! Things that make you go hmmm…

I really hope I’m not getting it but denial will only last so long.

On a side note I still haven’t started Enbrel. I haven’t heard from anyone in it’s regard for a week. I’m not sure what the hold up is.

I know the Ins. co. has decided to dictate to myself and the Enbrel Co. where the med can be dispensed. It’s crazy, it can’t even be dispensed where I live. What?!

Anyone thinking of going this route at least in Canada, be warned that you will be baby sat like a criminal while on this med because it’s so expensive. I sure hope it helps me for all the trouble in getting on it.

On another side note, I still haven’t heard about a colonoscopy date and I’m getting worse. My on and off stomach ache has now turned into constant and often sharp stomach pain. It gets worse when I eat. The fissure is still there too.

I was actually considering going to emergency this weekend but now that Mr. CrankyPants has the plague, he can’t take me. He’s too sick and I’m sure the hospital wouldn’t appreciate him coughing all over their ER.

We need a break.

Dear Mr. CrankyPants please no more gifts of this nature. I’m good really I am. Much love.

No Snow & Sunshine,

CrankyPants

Emerg

It’s getting to the point that those in my life who know about this crohn’s concern are telling me that I need to go to emergency. It’s just so hard to wrap my brain around the wait time and the anxiety that goes with it not to mention the potential exam I might face.

The potential exam would not only be as embarrassing as hell but also painful as hell.

You never know what kind of Doc you’re going to get either. The last one at emergency was amazing. Kind, compassionate and gentle. If I knew I would get him again I might entertain the thought more but there’s no guarantee.

The fear and the pain are taking an emotional tole on me. I want to wish this away.

Unicorns & Rainbows,

CrankyPants

 

I’m Really Scared

I’m really scared that I have crohns. Things are progressing fast. I have a fissure (The last Dr. I saw about it thinks that’s what it is.) that won’t heal. I’ve had it for 6 months. The pain is so mind numbingly bad even with Perocette I’ve not been very functional. Except I have to be. As soon as I don’t have to be, I’m flat out.

Now my stomach seems to hurt more often then not. I’m afraid to eat as it hurts more after I eat. (I’m eating anyways). I can’t eat anything spicy or much of anything with flavour or taste. I’m running to the washroom too much even with bland food. That’s not helping with the fissure.

I thought the meds were causing this but I’ve been off them long enough now that I should be improving. I’m not. I’m just getting worse.

Now I wonder did the meds cause this? Did it start before the meds, and the meds exasperated it? I feel like things with the disease are progressing so fast that I don’t have time to deal with any of it emotionally. I haven’t had time to wrap my mind around any of it let alone this now happening. This being just about my worst nightmare. I watched my father, aunt and a friend suffer horribly from it. I watched my grandma suffer horribly from Rheumatoid. I can’t get those images out of my mind. I don’t want this to be my fate. It seems though that my fate has other ideas.

Hubby wanted to take me out for dinner tonight and he asked me earlier in the day since I need warning. I cried my eyes out because I was feeling so awful but wanted to go, and didn’t want him to feel bad. It seems every time we want to do something I feel to sick. This disease is robbing my life and my Hubby’s. He’s amazing about it. He’s very supportive. I just feel guilty and like a burden. This is not how I saw my life going and I’m not okay with it.

I did pull it together and we went out for dinner. That was a bit of an ordeal because there’s so much that I can’t eat, but we did it, and we hung out in town for a bit after. I could stay at home and be in pain or go out for dinner and be in pain. I opted not to let the disease keep me at home this night.

Aside from my Hubby, I have zero family support and really zero support of any other kind other than a home care cleaning lady.

I haven’t had time to grieve or make peace with it, that is if there is such a thing. I don’t know how much more I can bare.

I’m sick and tired. I’m sick and tired of being sick and tired.

And that’s the raw truth. That’s lupus, crohns, rheumatoid and every autoimmune disease. They steal everything and you never know when they’re going to strike with the next thing. The next thing is usually what you would least expect. There is no figuring this out. It has too many disguises.

Can you relate?

Sparkles & 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

Rheumatoid is not Arthritis but a Systemic Disease

Please share this post if you will.

Most people when they think of Rheumatoid Arthritis think of arthritis. It’s not. It’s a systemic autoimmune disease that causes arthritis and..A whole lot more. It attacks the heart, the lungs, the eyes. You name it in our bodies, it can be attacked. Most people in the world and in the medical world don’t know this.

If any of you are living with this or any autoimmune disease (Most will have more then one) you will already know that you will be seen as a hypochondriac often. When you list all you’re going through to a doc, you will hear things like, “That’s not my department.” I’ve heard that one often. Well in reality it is their department when they are Rheumatologists, and Rheumatoid affects more than your joints. Much more.

I follow another site called Rheumatoid Warrior. This lady lives with RD. She’s written a book on her experience with this battle. It’s free on Amazon today. I’ve started reading it and wow! It sure makes me not feel so alone in this.

Her website has tons of stories of what people have battled beyond the arthritis part of this disease.  RA Warrior is fighting to have the name changed to Rheumatoid Disease rather than Rheumatoid Arthritis. It’s so misunderstood.

Here is the link to the book she’s written. https://www.amazon.com/Rheumatoid-Arthritis-Unmasked-Dangers-Disease-ebook/dp/B074CLX8TT/ref=sr_1_1?ie=UTF8&qid=1509374704&sr=8-1&keywords=rheumatoid+arthritis+unmasked

I’m not being paid in anyway. I’m just bringing some awareness and help where I can, since I feel very alone in this battle. 

I would love if any of you reading this would list the symptoms you have that you may find strange. They’re likely related to autoimmune disease. Here are a few of mine to get you started.

  • Trouble breathing and or asthma
  • Raynauds (Circulation is cut off in fingers, toes, nose/ears) 
  • Brain fog- trouble finishing sentences, bad memory
  • Painful tongue/swollen taste buds
  • Red burning blushing face (Not skin, nerve related)
  • Fatigue that’s more extreme then a normal tired
  • Epilepsy
  • Interstitial Cystitis (Have since lost my bladder)
  • Gut issues
  • Dry eyes/mouth/nose
  • Mouth sores
  • Fevers
  • Infections out of nowhere
  • Terrible joint pain/swelling/redness (Feels like joints are badly sprained)
  • Migraines
  • Auras 
  • Rashes
  • Extreme itchiness without a rash
  • Kidney or other organ involvement
  • Restless leg syndrome

These are just some of what I battle not all at the same time. Some things will come and go. Some will come and stay. Some start slow and progress over time. This disease is relentless and deadly and so very misunderstood. This disease and others like it are progressive.

You are not alone. Those of you battling it know exactly what you’re up against. Those not battling it, you’re lucky please be kind. We know that you can’t understand unless you live it, but we’d hope that at least you’d be empathetic. It’s a hard enough fight without having to deal with criticism, or skepticism, or being told how to heal it.

Just because we don’t look sick doesn’t mean we aren’t. We’re good a faking it. But we fake being well, to please everyone else. We want to fit in, keep up and be a part of your lives but this disease does not allow us too. Please don’t give up on us. Our immune systems are constantly attacking us. The pain and exhaustion that causes is often unbearable, and would put the average person in bed. We keep going.

The meds we have to take while they help in ways, also have their own often horrible side effects. So there’s that battle too.

And one more thing. If you see a person parking in a handicapped parking spot that doesn’t look sick, don’t assume they aren’t. There are so many debilitating invisible illnesses out there.

If you’re curious ask. I love when people ask me, because it gives me a chance to educate. I thank strangers when they ask.

So again if you’re battling any autoimmune disease please list symptoms that you have even if you think they may not be related to the disease. Let’s support each other and maybe we won’t feel so alone.

Sunny Days & Support,

CrankyPants

 

 

 

 

Update

Holy crap on a cracker it’s been a crazy busy 12 days. Those 12 days I was also plagued with fatigue. Not just a normal tired but disease related fatigue. That’s like trying to function tethered to concrete.

Yesterday and today have been a bit better in that regard. However, I’ve also been having trouble breathing and I still have horrible pain where the sun don’t shine.

I am sadly now awaiting to hear about an appointment for a colonoscopy. I’ve been in this kind of debilitating pain for 6 months now. I’m loosing weight while eating a lot. I also seem to get a lot of gut aches as well. I’m very concerned about the possibility of crohns or colitis as it runs in my family. No pun intended but kind of funny non the less. This all started with the DMARD’s, so I don’t know if the meds casused this or the disease. Maybe the meds started it and the disease took over. Who the hell knows. All I know is something is very wrong and not getting better.

It really scares me. It would be my worst nightmare.

As far as the Enbrel is concerned, there’s good news there. I am being approved for it with full coverage. I will be starting in about 3 weeks. I could have started right away but because I’m required to see the Rhumie once every three months on it, I opted to put it off a few weeks so I don’t have to make the 10 hour trip in the worst of winter, in an area that doesn’t look after their snow/ice covered roads.

That causes me a severe amount of panic and we all know how good that is for the disease, not to mention my Hubby who has to deal with my panic while trying to drive these horrible roads.

I’m so thrilled to be approved for Enbrel with full coverage. I’m very hopeful. Not only is it known to control the pain and swelling of this disease (Rheumatioid/Lupus) but it’s known for controlling crohns and colitis.  It can also put all these into remission without the horrible to me side effects of all the other meds I’ve been on. It’s a med that works alone, so I don’t need to combine Enbrel with the other aforementioned meds that I’ve been on, or Prednisone.

If I haven’t mentioned it before (And I probably have). I won’t touch Prednisone with a 10 foot pole. It’s been no easy task standing my ground on that one with the docs either.

My brain just can’t wrap around how that drug is good. It may help with pain but causes all sorts of other very serious issues. To me, the trade off is not worth it in any way shape or form. I know for some it is, but not for me.

So that about catches you up.

How are you all doing?

Spring Flowers & Sunny Days,

CrankyPants