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

 

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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

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 

 

 

Random Thoughts From the Brain of CrankyPants

CrankyPants is exhausted. Or should I say fatigued. Those of you who battle autoimmune disease will know the difference.

Last week was crazy busy, and this week is the same. It’s the beginning of busy season for my business. I did a very intense pitch last week and I will be going into another store with my candles. I’m excited and a bit overwhelmed at the same time.

Tomorrow I’ll be talking with EnLive. The company who makes Enbrel. They called today and I didn’t have time to talk to them. Apparently it’s going to be a half hour conversation. They have to call my Ins. Co. whilst on the phone with me. This should be interesting to see if I my Ins. Co will actually approve Enbrel for me and whether the Enbrel Co. will cover the rest of the cost which is about 20%.

It will be the only way we could afford it.

One difference I’ve found since I’ve been off all the meds is that my hands or all the joints in my hands rather hurt more. I assume the Plaquenil was helping some with the pain, but the trade off was being sick all the time. Hmm..No thanks. It will take three to six months to work but if I get on Enbrel it should take care of that.

It’s actually good to know how much the disease is affecting me and progressed since I started all those meds. It’s chilling really how fast it’s happening. Hopefully Enbrel will also slow the progression.

Do you ever feel like it’s so difficult to keep up with how fast life goes while battling this disease, but you have no choice but to keep up? That’s how I feel. I have no family support aside from my Hubby who works long hours. If I don’t get things done, they won’t get done.

I have a cleaning lady who comes in vacuums and washes the floors for me as a home care service. For that I’m grateful. Other than that, I’m kind of on my own. I think I need a holiday.

Well gotta get to candle making. What do you do to get your focus off the pain?

Candles & Unicorns,

CrankyPants

 

Rheumie Called

So I heard from my Rhumie today finally. She was actually kind I have to say. It almost feels like a Jekyll & Hyde thing.

She was trying to find ways to help me avoid having to make another big trip to see her. There is no option if I want to get on biologics the Government requires me to see her again.

Soo..We have to plan another trip and fast because the snow is coming soon. This month they are calling for it. Doc is sending me the paperwork, and blood work requisition and she wants me to have x-rays again. I will make an appointment as soon as that comes

She’s will then apply for Humira for me. I’m a guinea pig on this as she’s never applied for it for someone with MCTD before. We both know it helps with joints pain and swelling, and that’s my biggest battle.

She said it shouldn’t affect me like all the immune suppressants I’ve been on have. Here’s hoping not. It is an immune suppressant though. She says I can get sick easy on it, and if I do get sick, it’s harder to get well. To me that’s no different than the other meds. What I hope is different is, I don’t want it affecting my gut. So fingers crossed.

I sure hope that when I go see her, I get the nice side of her I had today.

How was your day?

Sunshine & Stars,

CrankyPants