Tag Archives: rheumatoid arthritis

A Silver Lining

22 Friday Nov 2013

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One of the silver linings of having RA is….::Drum roll::

Grocery shopping!

 

I love shopping for food because I am always hungry.  I eat less, more frequently because my medicine-induced ulcers destroyed my stomach a year ago. I am okay with that! I love to snack!

I have never been able to eat large meals without feeling sick anyways so when my gastroenterologist told me I needed to make these meals even smaller, I was thrilled.

I always have snacks around, in my purse, in my car, in multiple drawers in my house. (Healthy snacks, usually – fruits, veggies, nuts, etc.)

 

This, however, is the downfall. I tend to go overboard while grocery shopping, buying more food than I probably will eat in the week. Though, I never ever let food go to waste!

My flares are accompanied by major nausea which is unfortunate because since I am not moving too much I am always hungry. On the days when I still have to go out and buy dog food I am lucky I am nauseous because it keeps me from buying too many groceries!

Oh the silver lining! …Just like when my ankles and knees are swollen and they make shaving just a bit easier 🙂

 

Hi, my name is Monica and I have RA.

The Infusion, Part Two

22 Friday Nov 2013

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Apologies on the hiatus, I flared up from playing with my dog and I felt too tired and uninspired to write let alone paint my nails.

Speaking of which, I am sitting late for my infusion this month…again!

 

I love Orencia. While I do not feel 100% at any given point of time, I feel close most days. However, I am very sensitive to medications and being pumped full of 500mg of immuno-suppresant takes it out of me.

I am more or less down for a day or two.

 

Last month, when I got home, my dogs came running to see me – tails wagging, eyes bright, jumping up and down…

Within 5 seconds, their ears went flat against their heads, tails went in between their legs, and their head and shoulders went low.

I was nervous. I did not feel too bad. A little tired but that was all.

 

Saachi and Affie crawled into bed with me and slept on top of me. The cats joined us five minutes later and added themselves to the pile.

We looked like a family of ferrets.

 

Animals are extremely intuitive. They catch on to emotions and feelings we may not know about ourselves.

But even during a bad flare my pets never act this way.

 

Honestly, I was afraid to go to sleep.

Were they acting like this because I had a reaction I did not even know about? Was it safe to close my eyes?

I held out as long as I could but eventually I was too tired to care. I wanted to sleep.

Needless to say, I did wake up…five hours later…

And none of my pets had moved.

 

Hi, my name is Monica and I have RA.

Dumb Sh*t People Say: RA Edition – Series Four, Part Two

19 Tuesday Nov 2013

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“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

It is so not okay to say this to anyone. Ever.

I do not need the reminder of how crippling RA is.

This is not for fun and games or to play hooky from work (Though, I have been lucky in I have not missed work because of it).

Sometimes it is the only way to take down a flare!

 

If I cannot get out of bed, brush my hair, climb the stairs, and I am already on the highest, safest dose of medication, how else do you expect me to take down a flare?

Why is this different from when you are sick with the flu?

It’s not.

 

I think people are incredulous because sleeping all day it is for “sh*ts and giggles” and laziness. To them, it is a choice.

Not for me.

For me, it is a necessity.

I cannot think of anything less fun than feeling more dwarfed by my auto-immune on the days I am chained to my bed.

 

When I bow out of plans I only say I am not feeling well. I no longer mention anything about rest.

People cannot imagine that it takes this much sleep to recover from a flare, so the first thing most people think is I am faking or trying to get out of something.

 

No. 

 

I need to do this to be functional.

And no.

 

I am not lazy.

 

Hi, my name is Monica and I have RA. (And in order to manage it, I take “sleep” days.)

What to Do About a Fever?

17 Sunday Nov 2013

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I know fevers can be dangerous in people with autoimmunes.

 

A fever means there is a bacteria or infection and the body is raising it’s temperature to fight them.

Here’s the thing: RA flares usually, not always, include fevers because the immune system tricks itself into thinking there are unhealthy cells.

Which means the immune system cannot distinguish between the healthy tissue and actual infection.

 

This fever with a flare is relatively new for me. Fevers only started accompanying my flares a year ago.

So.

How do I know when I really need to pay attention to the fever?

 

Do I wait to see if it goes away?

Should I take extra medication?

Should I just ignore it?

 

I do not feel sick, as in cold or flu-ish. My fevers never stay for more than a day.

So, if it lasts more than a day should I worry?

 

I want to think that if it is a problem, I will be able to tell.

 

Thoughts?

 

Hi, my name is Monica and I have RA.

The Infusion

15 Friday Nov 2013

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To see the accompanying nail art click here.

 

This post is way overdue but I guess it works out better since I can talk about how well my new medication works.

For a year I was on weekly Orencia subcutaneous (under-skin) self-injections. I thought they were great. Until they were not anymore and stopped working. I tried Xeljanx for a month with absolutely no results. It was like I was on no medication whatsoever. So, I went back to Orencia.

On the first round of Orencia, I felt 80%! That had to be the record so far. When I returned to it I never felt better than 50%. It was a huge bummer.

My rheumatologist and I decided to try the monthly Orencia IV (through the vein) infusion instead. What was the harm? I planned on living in the same place for at least 6-12 more months and it was best to start new medications in as controlled environment as possible. We knew I had success with the subq (abbreviation for subcutaneous) injections and I would be more receptive to the higher dosage extended over a month.

 

I am not going to lie. I was a little upset.

When starting the weekly subq injections, I had to sit with the IV to kick-start the process. Three days later, I was hiking, climbing, active!

I was expecting the same reaction. So when I still felt lousy, my spirits sank.

Two weeks later, like clockwork, I felt great..but, only for two weeks.

There was a mix up with my insurance and I sat for the infusion a week late. (Note: with all the changes in public healthcare, private companies are more calculated about which and from where they will cover biological medications.)

There was one disastrous week when the previous month wore off and the current dose settled.

 

Now we are careful to make sure I get the infusion on time every month.

I feel great. (For the most part.)

I am easing my way back into climbing.

 

The only caveat? If I really mess up and flare, I do not have as many quick-fix meds (like my weekly injections) to “put out the fire”. I can only rely on prednisone. Slow and steady wins the race. Rather, slow and steady is my only option to win the race 😉

 

Hi, my name is Monica and I have RA.

Brrr! It’s Cold Outside!

12 Tuesday Nov 2013

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To see the accompanying nail art, click here!

Yesterday, it was nearly 50 degrees.

Today, it stayed between 30 and 40.

 

I am very lucky that weather does not affect my symptoms, especially because the DC weather changes gradually!! But, when the weather changes at the drop of a hat my body goes haywire.

I felt ok when I woke up, my wrists were a little stiff, as were my fingers but I did not think too much of it. After all, I got about 8 hours of sleep and I was no stranger to morning swelling and stiffness.

 

I had to drive into the city with my father because of parking (so he could get his passport renewed and I could “stand” or circle around).

I found ROCKSTAR parking across the street and walked to the nearest Starbucks. I was not outside for very long. But, on the drive home I started feeling a little….heavy? It is hard to explain the feeling I get when a flare is about to start…maybe it’s numb? swollen?

Anywho…

I got home and lay down. I knew the flare was upon me. The pressure on my wrists, fingers, shoulders, hips, and knees was painful. Even laying on the side of my face made my jaw tingle. I could not bend my legs and my spine felt swollen.

I proceeded to sleep for four hours straight. Hah. There is my off-work “rest” day!

 

My wrists and fingers are swollen but I am feeling a little better. However, I am on the most pain medication I can safely be on, so I think my next step is to increase the prednisone.

 

Hi, my name is Monica and I have RA.

Dumb Sh*t People Say: RA Edition – Series Four, Part One

09 Saturday Nov 2013

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“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

To see the accompanying nail art, click here.

 

I did not. Until you said that. And now I am angry at you.

Seriously? Obviously, you are able-bodied. The problem with rheumatoid arthritis is I do not know if I am going to flare up or when.

What I do know is if I over do it, I will flare up and I have no choice but to rest.

Sometimes, medications just do not cut it. I have to sleep. I have to stop, let me body rest, and re-coop.

Sometimes, a nap is enough to keep my energy levels up and pain levels down. Sometimes, I have to take more than one nap a day. Sometimes, I have to sleep all day.

Medications are great, they make me feel great….or greater than I could feel. However, sleep is the best medication.

 

So, what is the difference between you sleeping all day when you have the flu and when I have a flare? Nothing.

So, why should I feel bad when I rest?

 

I will not lie. I wish I did not have to nap as often as I have to. I have things I want to do on my days off from work, I have errands to run, a life to live…

It is just one of those unfortunate “side-effects” of having an auto-immune.

And you know what? If taking a “rest day” ensures I can function for two or three days at a time, I am going to take it. And not feel lazy.

 

Hi, my name is Monica and I have RA.