I Want To Hear From You

I don’t think these autoimmune diseases that we battle get enough publicity. People really don’t have a clue what we live with and how much pain we are in.

So…

I want to hear from you. This post is about Rheumatoid Arthritis/Disease. I’d like to know what your first symptoms were. The very first symptoms if you think way back before you were diagnosed and now can connect it to RA/RD, and the the first symptoms that sent you looking for answers knowing something was very wrong.

I know this can be a difficult question to answer especially if you have more then one autoimmune illness.

For me, as far as Rheumatoid Arthritis goes, I would say my first symptoms were back and hip pain. Neither of which sent me to the Dr. for answers. I just thought that I was getting older and things hurt.

The thing that finally sent me in the fight of my life for answers was severe elbow pain. It started out of nowhere and hurt so bad that I would have tears streaming down my face involuntarily. I could hardly use my arms. It started in one elbow and spread to the other. Then other joints followed in quick succession. I was told for a long time that I had tennis elbow. Even though it was in both elbows out of nowhere one day. I’ve heard many say that their first symptom was extreme fatigue.

Rheumatoid Arthritis/Disease does not always start in the fingers or hands as believed by many. There aren’t always red or inflamed joints. It can even start in your organs. Our own immune systems attack us anywhere and everywhere at any given time. The disease does not fit in a box despite what Dr.’s seem to want to believe.

So where did your Rheumatoid Arthritis start for you? What sent you to the Dr.s? Did the Dr.’s believe you?

Mine didn’t.

My hope is that this will help others in their struggle for answers.

Sunshine & Rainbows,

CrankyPants

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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

 

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

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

 

 

 

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

Canadian Thanksgiving

This weekend is our Canadian Thanksgiving. Hope everyone in Canada is enjoying the holiday! We sure are. I can’t wait for turkey dinner tomorrow! It’s gotta be my favourite feast ever.

In light of Thanksgiving. What are you thankful for?

I’m very grateful to be able to spend the whole long weekend with my Hubby and to be able to cook a turkey dinner with his help.

The weather hasn’t been too bad either. Usually we have snow by now and we don’t! Yay!

Turkey dinners & Naps,

CrankyPants

Raynaud’s

Raynaud's
Can you see it? Not even the finger usually affected.

Does anyone have this? Isn’t it fun? I have a few fingers and toes affected but one finger seems to be almost constantly white when it’s cold or when I’m stressed. It seems to also get quite swollen because of it. I wear half mitts all the time, winter and summer. It’s become part of my style, because why not make it fun right?!

Raynaud’s for some who may not know causes your blood vessels to dilate thus cutting off your circulation in the area affected. It causes that area to turn blue, then white and as it goes back to normal red. It feels exactly like frost bite where you lose all feeling, then when the feeling comes back it hurts. It comes with autoimmune disease often. Can be a symptom of lupus. For me it’s what finally convinced my GP after three years that something more serious then tennis elbow was going on with me.  My finger turned blue in front of him during an appointment to find out why my jaw was locking.  We never dealt with my jaw. Once the Dr. saw my blue finger, he decided that my jaw locking was related to what was going on with my finger. In other words something autoimmune, and off to the Internist I was finally sent.

It will/can affect your fingers, toes ears and even your nose. Cold is a big trigger followed by stress.

It means it’s hard for me to stick my hands in a freezer, to get anything out at home or a grocery store.

Docs have scripted me blood pressure meds to take for it if I want to. I haven’t worked up the courage to take another med yet, but I may have to this winter. We get extremely cold winters up here and my Raynaud’s is bad.

What is your experience with Raynauds and meds for it?

Hot days & Fall Colours,

CrankyPants