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. ūüė¶

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

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Rheumie Appointment Update

It has been a crazy busy week, it’s not over yet and I’m exhausted. It seems everything in life is all or nothing. Right now I’m in all.

So Hubby and I made the long trip to the Rheumie appointment on Monday. Thankfully the weather was favorable for the drive. The appointment ended up being 2.5 hours long with a half hour wait to see her.  I had to see the biologic nurse and that took some time.

Long story short, the Dr. is calling what I have sero negative rheumatoid arthritis for insurance purposes. She still won’t call it that for me. I’m so confused. Last time I saw her she called it mixed connective tissue disease not yet determined. (You read that right).¬† This time it’s sero negative rheumatoid arthritis, with mild lupus symptoms. I swear I get a different diagnosis or half diagnosis every time I see a specialist.

Anyway the Rheumie is going to bat for me to get on Enbrel. It’s a biologic shot I would give myself once a week. That will help control swelling, pain and progression of the disease. It’s no easy process to get on since it costs $1800/month. Insane. I. Know. I have to of exhausted all other medication options before I have a chance of qualifying for this med. I’m almost there.

There is apparently one other med I have not yet tried but the doc is going to fight the Insurance company for me on it because it’s known to do the same thing all the other meds have done to me. I didn’t know this but I’ve lost 10 pounds because of how sick these meds have made me. The doc says I’m borderline underweight. I was very surprised since I thought I was packing on weight. Like I said the meds have done a number on me, maybe causing more serious issues. Doc wants me to have a colonoscopy. My nightmare.

When I went for all the testing prior to this appointment, part of that was hand x-rays. The tech asked me why I’m getting hand x-rays again when I just had them two months ago. She said there would be no change in two months. Guess what? There was change. That’s scary and shows despite the meds I was on, how fast the disease is progressing.

So jumping through hoops¬†to get mostly full coverage for Enbrel has begun. Good times. If the Ins. company insists I try this other med first I don’t know what I’m going to do. I can’t continue to be sick like I have been. I asked the Dr. how long I’d have to give it. She said three months. If it does the same thing to me, I won’t last that long. It could land me in hospital. So, I’m grateful the Dr. is arguing it for me. Hopefully she wins.

It was a very long day with 10 hours of driving, a dog sitter who bailed on us and we only found out 3/4’s of the way out of town, a 3 hour Dr.’s appointment and a whole lot of information to take in, forms to fill out…But,

I had the nice side of the Dr. The biologic nurse is great. Our neighbour stepped in and looked after our dog for us. And I’m finally on the road to getting on a medication that should help and not make me so sick. Oh and the Dr. told me my kidneys are good even off the meds! That’s the best news because they were iffy before. Can I get a whoop?!

Good News & Tired Blogger,

CrankyPants

A Little Positive

It seems my stomach ache and the issues that went with it have finally subsided since I went off the meds. I can’t tell you how happy that makes me. I still have one complication that came of it all that’s not going away, which makes me wonder if it’s the MCTD causing it and not the meds. Or the meds caused it, but it’s not getting better because of the disease? It’s always a guessing game, that I don’t really want to play.

My stomach feeling better removes some of the concern of making the 10 hour trip on Monday. As long a day as it will be, I get to spend it with my Hubby who is in busy season at work so I don’t get to see much of him. Maybe in some ways, or lots of ways Monday will be a gift.

Fingers crossed I get the nice side of my Rheumie that day especially when I have to tell her I stopped taking Plaquenil too. It can’t be good when the meds have made me sicker then this wicked disease. If that’s the case why would I stay on them right?

I’m still hopeful to be able to get Humira and that it will help without the same terrible side effects. I’ve heard lots of good about it.

How have you been doing?

Good News & Twinkly Stars,

CrankyPants

Headed to the Rheumie

I managed to get in with the Rheumie for Monday. Hubby has taken off work and we’re going to do the trip in one day. I have to see the Rheumie to have her apply for Humira for me.

It’s not going to be an easy trip. I thought I was doing better since I was off the meds, they are still in my system so either they or the disease is still causing major gut issues. How does one do a 10 hour trip with that going on?

I’m usually completely fried after a trip like this, but I hope it will be the last one for the entire winter. Please God let it be the last one.

I’m grateful that I have such a supportive Husband who’s willing to take off work and drive me. I feel for him. Being chronically ill is hard on our significant others too. They watch us suffer like no others do, they feel helpless and heartache. We can’t forget that. Autoimmune disease affects the family, not just us.

I make sure I thank Hubby often and ask him how he’s doing with everything. I acknowledge how hard it must be on him. I make it okay for him to tell me it’s hard and how. It’s one thing I can give back to him.

Today was a busy day. I had to fill three orders for three different stores with my business. I have another store I’m pitching next week, and I have a show coming up in Nov. Tis the season already! I’m happy to have the business, but with battling MCTD and being a one woman show with my business, it can get to be too much. I make everything myself, do all the pitches, deliveries, shows, label printing, invoices…

I wish could hire help but my business isn’t at that place yet.

Sunny Days & Rainbows,

CrankyPants

Weird

Is it weird that I’ve been off both meds that are meant to treat autoimmune disease, one for just over a week, the other for three days and I am beginning to feel better then I have in the last almost two years? I’m still in pain but I always was. I just have less other complications that have literally knocked me off my feet for months.

So from what I can gather with maybe not quite enough time to fully know yet, the meds didn’t help with my pain or swelling at all and they’ve made me much sicker then I otherwise would have been.

I’m glad I feel better, but I feel like I’ve lost so much time. I’m also aware that with the nature of this disease, things could change in a nanosecond.

I sure hope that when I start on Humira, it will be helpful and not make things worse like the other medications have for me. I’ve heard good things about it so I hope I will qualify for it, and it will help me. I’m trying to get into the Rhuemie for next week. It means 10 hours of driving but the snow is coming. In fact we have a bit of snow tonight so, I have to get there and back soon.

I know everyone reacts different to these meds, and my body doesn’t seem to react well to a lot of meds.

Dear body, react well to Humira please. I could do with being in a lot less pain, with a lot less horrible side effects. Signed CrankyPants.

What have been your worst side effects? Have you had good results with any meds?

No snow & Sunny Days,

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 

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

The Battle with the Dr. Cont.

There’s not a whole lot to update you on. I’m still at a standstill with my Rheumie. Tomorrow (Wed.) will be day three of waiting for her to return my call about coming off the Cellcept and wanting to look into biologics further.

I suspect we’re in a standoff. I hope not but I won’t be surprised if she ditches me. If she does it will confirm how I’ve been feeling about her. If she does, she hasn’t been a whole lot of help anyway. If she does, I think I still have my Internist in my corner but he can’t script biologics so..It may mean I have to wait until spring to see a new Rheumie.

Things are so uncertain. It’s a crap shoot being on the meds, it’s also a crap shoot coming off of them. Neither choice is good, but for now I need to know how I’ll fair without the immune suppressants, because I know I’m not doing well on them at all.

Honestly I feel like if the disease doesn’t do me in, the meds will anyway. Which one will allow me a better quality of life? Anyone’s guess. There’s only one way to find out.

Life is about risks. I have to do what I feel is best for my quality of life.

Have any of you ever had a Dr. explain the disease or medications to you? I never have. I’m so thankful I researched a lot before I saw Dr.’s I knew what was going on with me before they did. I knew what meds might be given and I knew all about them. I knew about autoimmune disease.

It would have been a scary shock had I not known. Why don’t Dr.’s give us any information anymore? It boggles my mind.

This autoimmune disease is scary, it’s life threatening as are the meds, and Dr.’s tell us nothing? How is that “Do No Harm?”

That’s my Cranky Pants rant for today. I didn’t even know I had that in me until I started typing.

Sunshine & Sparkles

CrankyPants

Las Vegas

I just want to say that my heart goes out to all those who’ve been affected by the mass shooting in Las Vegas. I can’t even imagine what you all must be going through.

Know that Canada stands with you too. We lost at least two Canadians one from my Province as well.

It’s just so sad.

Love & Prayers,

CrankyPants

No Meds

My last post was talking about the struggle with my immune suppressants making me so ill. Last night I decided to skip taking them for the night. I just couldn’t stand the thought of taking them. I also wanted to see if there’d be any difference, knowing it would likely take time.

Boy was I surprised.

I felt better today than I’ve felt in many months. My gut didn’t hurt, the complications I’ve been having one of which caused severe pain were gone.

In. One. Missed. Dose.

Gone.

This has made my decision for me. I’m done with the immune suppressants. If they are taking my life away more then the disease, they are not worth it too me. I need quality of life. I will still be asking the Rheumie about biologics to help with joint pain. I call her tomorrow. I don’t expect to get to talk to her tomorrow but she’ll call me back.

Keep your fingers crossed for me that she’ll still work with me. She more likes to blame me that my body isn’t tolerating the meds like it’s my fault.

I’m so glad I skipped the meds and felt so much better today because I had an Entrepreneurs market to be at with my business this afternoon. It was also very telling. I hope that I continue to improve from here. Hubby keeps reminding me it could just be a good day. He’s right, I sadly need to keep that in mind because of the nature of autoimmune disease. He doesn’t want me to get my hopes really up and be let down. He sees me hurt enough. I’m blessed to have him.

Hope this finds you enjoying your Sunday evening.

Good days & No meds,

CrankyPants