Short update

I emailed my biologic nurse about the rash I’m getting from the Enbrel, and she said as long as it stays around the injection sight it is common to have it happen for a time and my body would eventually get used to it and not react anymore. She said to watch it and if it spreads then I may be allergic to it and have to look into another med.

It spread.

I got a number of raised patches in different areas on my legs. And then a bit of different kind of rash all over my back chest and stomach. The raised patches are itchy and tender, the rest isn’t.

She had suggested I try Benadryl non- drowsy. I didn’t have the non- drowsy at home so with yesterdays injection I went without.  It’s a long drive into town to get it.

Anyway I’ll have to wait until the New Year to talk to my nurse again. In the mean time I’ll live with it. At least I can breathe.

Happy New Year Everyone!

Good Days & Good Nights,

CrankyPants

 

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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

 

 

Ticked off

Since I’ve started Enbrel I’m required to see a Rheumie once every three months. That I knew. What I didn’t realize is that they call me and tell me when my appointment is. The Ins. Co. controls that.

Well sorry I told them already I’m not making a trip in the winter. I had to tell them again. Fine they accommodated that and now I’m allowed to go in April instead. Great.

Next issue…

I’m to be there at 9 am.

Umm…NO!

No way in hell can I make a 5 hour trip one way sick as hell with crohn’s sympotms and pain (Maybe I’ll be diagnosed by then who knows) and be there at 9 am. That would  mean I’d have to be on the road at 3 am.  I have epilepsy too. No sleep=trouble.

Mr. CrankyPants has to take off work to drive me. There’s no way we can make it a two day trip. They’re going to make us go broke. He’s the only one working. Plus his work wouldn’t be happy about him taking off two days.

We’re told the Dr. only does morning clinics. Well then tough I can’t be there.

I’m waiting for a call back. Last time the doc accommodated the fact that I couldn’t be there that early. I can’t even make it to docs appointment in town that early. I’m too sick in the mornings.

No one gives a shit about our health, they only care about money and their schedules. I’m tired of not being treated like a human being. I’m tired of being sick all the time and needing all this seemingly more damaging then the disease medications. And medications that force me to take trips out of town I’m not up to taking.

You’d think with all this advanced technology that I could do a Skype appointment but noo… not good enough for the Ins. Co. Rheumie has to see my joints herself.

You’d think the Internist here in town could evaluate my joints and send a report to the Rheumie. But nooo..That’s not good enough for the Insurance Co. They apparently want one to suffer if they’re having to pay out.

I’m just so done. That’s my truth today. I’m just done.

I hope to be able to move the heck out of here even before this first appointment but certainly before the second one. I can’t see the Ins. Co. paying out any longer then the 6 months they’ve allotted me anyway. 6 months is how long this med takes to work. So if I do begin to get relief and they cut me off then what?! I’m in pain again, and now the pain feels worse because I got used to having relief?!  How do the Ins. Co. nurses live with themselves in this kind of job?

Happier days & Less Cranky,

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

Starting Enbrel

I think I’ll be starting my Enbrel injections on Friday and I’m more scared then I thought. I’ve just had so many bad experiences with the meds I’m not wanting more. I’m also not looking forward to the needle. Needles don’t usually bother me, but I’ve heard this med can hurt/burn going in and I’m not digging that thought.

I probably wouldn’t start Enbrel at this point until after Christmas in case there are unpleasant side effects, but the crazy ass pressure from the Ins. Co. and even more so from the Enbrel company is driving me bat shit crazy. They’re always calling to ask if I’ve started yet, even though I told them when I figure I’d be starting, and that I’d let them know the day I do start over and over.

Add in I told the pharmacist not to fill my script until I call and ask them to. I told them I’d give them the notice needed. I told the same pharmacist this over and over. Guess what she did? You’re probably guessing right. She filled my script.

This freaking med better help for all the trouble it’s been to both get on it and start when I’m ready. I don’t know that I’m emotionally ready and that’s not something anyone in the medical world considers.

It seems this med is more about them and money then it is about my best interests, health and well being. It’s so frustrating.

You know it’s a good thing I didn’t fill my script sooner as the Enbrel co. made a mistake that would have cost me $800 had I filled it sooner. I only found out about that on Friday last week.

Anyhow on a side note I’ve been crazy busy with my business which is both good and tiring. I’m thankful for the distraction though. I can tell some of my joints are getting progressively worse like my knees, my feet and my toes. So it shall be interesting to see if Ebrel makes a difference with that.

My eyes have started to bother me a bit more. I’m guessing it’s sjogrens progressing. And I still have the crohns like symptoms with no word on the big scary test I need.

I’m really looking forward to the Christmas holidays with my Mr. CrankyPants who is taking more than just Christmas off. He’s taking some holiday time he’s owed and he loves Christmas. Since he’s just coming out of busy season at his job, it will be nice to actually get the time with him.

How are you all doing? What are your Christmas plans?

Christmas Trees & Lights,

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

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