I Want To Hear From You

I don’t think these autoimmune diseases that we battle get enough publicity. People really don’t have a clue what we live with and how much pain we are in.

So…

I want to hear from you. This post is about Rheumatoid Arthritis/Disease. I’d like to know what your first symptoms were. The very first symptoms if you think way back before you were diagnosed and now can connect it to RA/RD, and the the first symptoms that sent you looking for answers knowing something was very wrong.

I know this can be a difficult question to answer especially if you have more then one autoimmune illness.

For me, as far as Rheumatoid Arthritis goes, I would say my first symptoms were back and hip pain. Neither of which sent me to the Dr. for answers. I just thought that I was getting older and things hurt.

The thing that finally sent me in the fight of my life for answers was severe elbow pain. It started out of nowhere and hurt so bad that I would have tears streaming down my face involuntarily. I could hardly use my arms. It started in one elbow and spread to the other. Then other joints followed in quick succession. I was told for a long time that I had tennis elbow. Even though it was in both elbows out of nowhere one day. I’ve heard many say that their first symptom was extreme fatigue.

Rheumatoid Arthritis/Disease does not always start in the fingers or hands as believed by many. There aren’t always red or inflamed joints. It can even start in your organs. Our own immune systems attack us anywhere and everywhere at any given time. The disease does not fit in a box despite what Dr.’s seem to want to believe.

So where did your Rheumatoid Arthritis start for you? What sent you to the Dr.s? Did the Dr.’s believe you?

Mine didn’t.

My hope is that this will help others in their struggle for answers.

Sunshine & Rainbows,

CrankyPants

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A Video on Rheumatoid Arthritis

I prefer to call Rheumatoid Arthritis, Rheumatoid Disease because it’s so much more than arthritis. That is only one symptom of the disease as you’ll see in the video.

One more thing I want to say is that they stress how important it is to be diagnosed quickly. That’s so much easier said then done when it’s hard to get into Dr.’s, it’s often hard to get Dr.’s to listen. And it mimics other autoimmune diseases. It’s taken 4 years for me and my Rheumie still doesn’t fully believe her diagnosis. Yeah figure that one out. I’ve got sero negative RA and Mild lupus symptoms. Sero negative meaning aside from being ANA positive, my RA doesn’t show up in my blood work. At least yet. It could as things progress, but I have many of the other symptoms of RA going on. Blood work is not definitive.

Good Days & Warm Beaches,

CrankyPants

Emerg

It’s getting to the point that those in my life who know about this crohn’s concern are telling me that I need to go to emergency. It’s just so hard to wrap my brain around the wait time and the anxiety that goes with it not to mention the potential exam I might face.

The potential exam would not only be as embarrassing as hell but also painful as hell.

You never know what kind of Doc you’re going to get either. The last one at emergency was amazing. Kind, compassionate and gentle. If I knew I would get him again I might entertain the thought more but there’s no guarantee.

The fear and the pain are taking an emotional tole on me. I want to wish this away.

Unicorns & Rainbows,

CrankyPants

 

I’m Really Scared

I’m really scared that I have crohns. Things are progressing fast. I have a fissure (The last Dr. I saw about it thinks that’s what it is.) that won’t heal. I’ve had it for 6 months. The pain is so mind numbingly bad even with Perocette I’ve not been very functional. Except I have to be. As soon as I don’t have to be, I’m flat out.

Now my stomach seems to hurt more often then not. I’m afraid to eat as it hurts more after I eat. (I’m eating anyways). I can’t eat anything spicy or much of anything with flavour or taste. I’m running to the washroom too much even with bland food. That’s not helping with the fissure.

I thought the meds were causing this but I’ve been off them long enough now that I should be improving. I’m not. I’m just getting worse.

Now I wonder did the meds cause this? Did it start before the meds, and the meds exasperated it? I feel like things with the disease are progressing so fast that I don’t have time to deal with any of it emotionally. I haven’t had time to wrap my mind around any of it let alone this now happening. This being just about my worst nightmare. I watched my father, aunt and a friend suffer horribly from it. I watched my grandma suffer horribly from Rheumatoid. I can’t get those images out of my mind. I don’t want this to be my fate. It seems though that my fate has other ideas.

Hubby wanted to take me out for dinner tonight and he asked me earlier in the day since I need warning. I cried my eyes out because I was feeling so awful but wanted to go, and didn’t want him to feel bad. It seems every time we want to do something I feel to sick. This disease is robbing my life and my Hubby’s. He’s amazing about it. He’s very supportive. I just feel guilty and like a burden. This is not how I saw my life going and I’m not okay with it.

I did pull it together and we went out for dinner. That was a bit of an ordeal because there’s so much that I can’t eat, but we did it, and we hung out in town for a bit after. I could stay at home and be in pain or go out for dinner and be in pain. I opted not to let the disease keep me at home this night.

Aside from my Hubby, I have zero family support and really zero support of any other kind other than a home care cleaning lady.

I haven’t had time to grieve or make peace with it, that is if there is such a thing. I don’t know how much more I can bare.

I’m sick and tired. I’m sick and tired of being sick and tired.

And that’s the raw truth. That’s lupus, crohns, rheumatoid and every autoimmune disease. They steal everything and you never know when they’re going to strike with the next thing. The next thing is usually what you would least expect. There is no figuring this out. It has too many disguises.

Can you relate?

Sparkles & Stars,

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

Rheumatoid is not Arthritis but a Systemic Disease

Please share this post if you will.

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

 

 

 

 

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