Rheumatoid is not Arthritis but a Systemic Disease

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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

 

 

 

 

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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 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

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 

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