Injection Night

I save my injections for the weekends. They make me extremely fatigued the following day. I sleep a lot and feel like I am in a fog. It is easiest if I have support from my husband the following day. It also relieves a lot of stress knowing our boys are taken care of. I hate that it ruins a weekend out of every month but if it makes me feel better for about two weeks then it is worth the set back.

I hate needles. I'm getting better but they still make me uncomfortable. It helps that the Simponi is a pre-filled pen auto injector. I never see the needle. I was on Humira before and that injection STUNG. The needle on this is fine and the medicine doesn't sting. It's over in about 10 seconds. I still have to give myself a mini pep talk but it's getting easier and easier to push the button.

Once it is over I am shaky from adrenaline. I usually go give my two boys a hug because if it weren't for them I probably wouldn't take care of myself in this manner. 

See you in 30 days....

Physical Visit

I met with my primary care physician today.

I have not seen him in a very long time.

I've done quite a bit of reading lately on Rheumatoid Disease.

I've learned that auto-immune disorders form and live in the gut.

The immune system is in your gut. That was new to me but it makes sense.

I wanted a physical but mostly to talk to him.

He's known me a long time and has been there from the beginning.

I trust him.

I wanted to see if I have any vitamin deficiencies or food intolerances.

There are certain foods that cause inflammation (like dairy).

I also learned that if you're lacking certain vitamins you can feel "achey".

Those things will certainly not cure me but if eliminating certain ingredients 

help take a bit of the edge off it's worth it to me.

I'm being tested for Celiac Disease and a diary allergy.

My oldest son has a severe dairy allergy.

He is also looking for low vitamin D and B12 in my system.

Of course, there is the routine check up tests too.... thyroid, cholesterol, sugars, and such.

Besides all of that, my doctor told me I wasn't a complainer.

I do feel like I complain a lot.

However, he also validated that I DO have a good reason to complain.

He made me feel very secure in all my feelings.

He actually gave me the strength to start sharing my feelings.

I explained to him how I am losing function in my every day life.

(I vowed to be nothing but honest.)

I can't scrub countertops, dishes, or toilets.

I can no longer wipe myself or apply lotion to my body.

I struggle with car seats, clasps, buttons, putting socks on myself or my kids, and shoes.

I am right handed and using my left hand feels very unnatural.

I am doing my best to incorporate it more in to my every day use but it's tough.

But seriously, think about all you do with your dominant hand and imagine you didn't have it.

Not easy.

He brought up a few options to me that hopefully will be in the works soon.

I'll explain in a further post once some progress has been made.

I may be getting a second opinion on treatment from a different Rheumatologist.

A new daily routine might be taking place.

I might be getting support from outside sources.

This disease is not letting up.

It never will.

However, it can be controlled.

That's all I am looking for.

That is all I am praying for.

My Rheumy Story

Hello. I'm Michelle.

I'm 30 years old and I have Rheumatoid Disease.

(Does that make me sound like I'm introducing myself at a support meeting?)

I believe most of you know me in person but for those of you who do not....

I have been married for 6 years.

I'm mom to two young boys, age (almost) 2 and 4.

They're handsome, am I right? I'm so proud of them.

I have two dogs, a chocolate lab and a sheprador.

I am a stay at home mom.

I love chocolate, knitting, running, taking photos, and sunshine.

I enjoy smoothies, cookies, and deep conversations.

I'm a sucker for pointless TV, good books, and catchy tunes.

I'm pretty average and not a daredevil.

My story goes a bit like this:

It was the summer between my freshmen and sophomore year in high school.

I was 15 years young.

I had been mentioning to my parents that my knee would give out on me from time to time.

They listened to me but I complained of "growing pains" often so that's what it was.

Growing pains.

It wasn't until we finished a boat ride on the Chicago River when my mom noticed

an egg like situation on the back of my knee.

I'm not sure on the timeline but sometime after that I saw the doctor.

Xrays, MRIs, and more....I was set up for knee surgery. 

I had a tear.

My surgery went well. I had a normal recovery except the swelling never quite went away.

My surgeon drained my knee and it was gross.

It was snot colored fluid.

At the time, we didn't know what that meant but figured it wasn't good.

My doctor suggested I be sent to a children's hospital in our states capital.

From there, I was diagnosed with Juvenile Rheumatoid Arthritis.

My joints affected were my right pointer finger, right wrist, left knee, and eventually my jaw/neck.

I was put on Methotrexate, naproxen, folic acid, baby aspirin, and the occasional dose

of the dreaded steroid, prednisone.

I did a short stint of Methotrexate injections.

I spent the rest of high school on that regimen.

My liver eventually started to not tolerate the Methotrexate.

Slowly my body was only affected in my left wrist.

I eventually was switched to Humira.

Humira is an injectable biologic drug.

I was stubborn, felt I didn't need drugs, and was scared.

I gave them up for a bit.

I was around 21 years old and thought I was invincible.

After I was married, I was put on Plaquenil.
I had experienced life with zero drugs and Plaquenil was the least aggressive.

I spent only a short time on the drug because I found out I was pregnant.

I spent the pregnancy on a low dose of prednisone.

However, after he was born, I had zero complications.

I breastfed for about 13 months.

I spent a long while in remission without medication.

I was able to do anything and everything I wanted.

I was able to be a fun and able mother.

I became pregnant almost two years after my first.

I, again, had zero complications and had a medication free pregnancy.

I was able to breastfeed him for 12 months.

About a month after the breastfeeding ended I had pain.

Nothing life changing but enough to slow my hands down.

I was placed back on Plaquenil.

I stuck with it for about 6 months (it can take that long to work fully)
 but I was progressively getting worse.

This time it was attacking my right wrist.

I'm right handed.

I spent about two months trying out new drugs.

I did Methotrexate again but the side effects were too much this time.

I tried Sulfasalazine but had an allergic reaction.

My husband had to do my hair that day. 

It had ended on me being on Simponi injections.

That is where I currently am.

I give myself a shot once a month in the thigh.

I have joint damage in my left wrist.

I have a lot of joint damage in my right wrist.

As of this past week, my jaw is feeling it.

I'm classified under severe.

I'm currently unable to do much of anything with my right hand.

There is nothing significant about my start with JRA/Rheumatoid Disease.

It appeared almost out of thin air.

It disappeared for about 3 years.

It came back.

That's my Rheumy story.

First Things First

Let me start off with a few things:

• I haven't had an English class since 2004. I was hesitant to start this blog because of that. I know my writing is not terrible and getting the point across about Rheumatoid Disease is more important to me.
• I will be calling it Rheumatoid Disease. That is not the proper name. It is Rheumatoid Arthritis but from what I've learned the "arthritis" is just one side effect. It is a disease.
• I would write privately but I can't hold a pen very well. Plus, the awareness is important to me. I'm not going to be able to share anything privately.
• I'm not looking for sympathy. I'm also not doing this for attention. I'm going to be honest. I'm going to talk about my personal highs and lows. I'm simply spreading awareness and, at times, clearing my own thoughts. I'll vent. I'll cry. I may share things that are hard for certain people to read but well, this disease is hard.
• I'm not a doctor. I'm not going to be giving medical advice. I'll share my story. If you have your own thoughts or questions I will answer with my thoughts. However, I always suggest you ask your own doctor.

With that out of the way.... let's get started. :)