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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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

 

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

Medical Everything

So, yesterday as you may have read I was at the Internist office.

Today, I went for part one of a TB test I have to get in hopes of qualifying for a biologic.

Friday I have to go for part 2 of  said TB test. The read. Then they are pressuring me to the get flu, pneumonia and whooping cough vaccinations.

Umm.. NO, notta, no way, not happening. Period. Wish “No thank you” was understood.

Anyway, I’m getting so tired of my only outings being for medical reasons. Since there’s always a wait, I have no time for anything else, except maybe on a day where I don’t have a medical something, grocery shopping. Such fun.

I hope Friday is the last medical something for a couple of months but I don’t hold my breath. We all know how unpredictable autoimmune disease is. It totally blindsides and messes with ones mind.

Maybe if it’s not too hot or sunny later (because the disease doesn’t like heat or sun), I need to get out for a walk with the dog. I may be just a bit Cranky. 😉

Green grass & Beaches,

CrankyPants

 

To work or Not to Work

This is a tough subject. I am on disability but I got disability after a three year battle long before I was diagnosed with MCTD. I fought for it because I have a urostomy that fills constantly and insanely fast. For those who may not know what that is, I don’t have a bladder. I lost my bladder many years ago to IC (Interstitial Cystitis). Now all these years later I’m told it was probably the autoimmune disease that caused it.

Anyway, for my own sanity I make and sell candles and melts. I use the sanity term loosely because as much as I love to make said candles, it causes me a huge amount of pain to do so. In the beginning it wasn’t so bad, but the disease is progressing very fast for me.

I also didn’t realize when I went into this, that I would have to go to craft shows and markets. Oh how I’ve always disliked them. Add in it does me in to be at them so I miss many. I was at the market for a time and that was not fun on so many levels but try doing it when chemo is hitting you hard. Yes they use chemo drugs to treat this disease.

I don’t know how much longer I will be able to continue unless I have help. Even then It would be really hard. However I don’t want this disease to beat me, and take away EVERYTHING that I love. I’ve lost so much already.

I’ve had this for many years but I’ve only been diagnosed in the last 3. I haven’t had any time to process all that’s happening because I’ve been to busy fighting the disease and fighting with doctors. Many many doctors.  Man don’t get me started on that. I may not be able to stop. Suffice it to say it’s been a long, hard, exhausting process that is never ending.

Just for extra shits and giggles, all but one of my specialists are a five hour drive one way. So whenever I need to see my Rheumie or Nephrologist, my Hubby has to take off work to drive me. Ten hours of driving and a Dr.’s appointment in one day. That would be exhausting for anyone let alone when we’re sick as hell.

Add in winter driving in the far north and well, it’s just not going to happen. Try to tell the Dr.’s that and then you’re being non compliant. Damned if you do, and damned if you don’t.

What’s your experience been?

Blue Skies & Unicorns,

CrankyPants

A Walk in the Park

Well I made it through yesterday’s shopping trip. Fatigue caught up with me in the evening. What can I do but rest right? Rest I did. Today is Sunday. My Husband and I usually walk in the park if the weather allows. For me “if the weather allows” has more concern then for some without this autoimmune roller coaster ride.

It can’t be to sunny, or hot. If it’s sunny, it needs to be cooler or I overheat fast. So much so that it can cause me to pass out. Thankfully today was cool and sunny.

Then I have to figure out whether I can walk. I could today but I needed my SmartCrutches. (A post to come on those amazing things.).  My hips still aren’t happy. Add in a struggle to breathe today that slams me from out of nowhere.

Despite all that I have to say that I’m grateful I was able to do the walk in the park. It brings me peace.

For those who wonder what autoimmune disease is, in short your own immune system attacks you and causes all sorts of problems. They most often come out of nowhere and they’re bad. It can attack anything from your joints, to your skin, to your organs to your brain. You can be holding your own one minute and near death the next, that’s how serious and deadly this disease is.

The medications they use to treat the disease make you just as sick or sicker than the disease itself but they are a necessary evil. I’ll save that post for another day.  I hope you’re able to find something about your Sunday to enjoy.

Sunshine and flowers,

CrankyPants