Tag Archives: flare

Rain, Rain, Go Away!

14 Wednesday May 2014

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I love rain. This is a good thing since I live in perpetual humidity. Even in the winter it is humid and the cold just seeps into my bones and chills me from the inside out.

I love to sit near the biggest windows, read a book, play on my laptop and drink a warm cup of cocoa and watch the rain batter the windows.

Thunderstorms are even better. I turn out all the lights, snuggle under blankets and watch the storm pass through. If the power goes out, the better! (Little monsters are not such a big fan of this pastime!)

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“Thunderstorms? No thanks.”

 

Unfortunately, especially over the last year, rain exacerbates my condition. My joints not only swell on the outside but I can feel it on the inside too. I feel a cushioning around my joints, like I am wading in a swimming pool. Everything else feels spongy, bouncy. It feels like my bone marrow swells up like a porous sea sponge. There are no nerves in my marrow so I cannot possibly feel anything but that bouncy feeling runs through my bones.

Joints aside, the rest of my body works at half-speed. I especially notice changes in my stomach. Food takes longer to digest and I cannot tolerate heavier foods. They sit in my stomach and make me nauseous.

It is so funny because I will wake up to an overcast sky and smile. I get to relax and enjoy Nature’s wonderful gift. I get to sit and watch the world. Even when I was little I could sit and watch out the window for hours…Then it dawns on me (I am not the most clear-minded person in the morning)…

“Uh oh…”

 

Anyone else? Does rain affect your joints or mobility? Does it flare up any other organs?

 

Hi, my name is Monica and I have RA.

The Chronicles of the Orencia Infusion: April

24 Thursday Apr 2014

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I may be taking a few days from my nail painting. My fingers and wrists are acting up. Just as well, I can catch up on my non-nail art related posts!

So, let us continue on my Orencia adventure…

 

April marks eight months on my IV infusion. This is the longest I have been on any biological medication since diagnosis. My symptoms are more even as the medication builds up in my system, I do not feel as awful towards the end of the month, and my flares are less severe.

However, and this makes me nervous…this past month, the immunosuppressant wore off two weeks early! I will not know for sure if this was the medication until next month’s infusion but I think it is since I should not have experienced such bad symptoms.

My knees were gone, my shoulders ached, I could not climb the stairs let alone get out bed. I increased the prednisone and still took double the amount of pain medications just to make it through work. My hand tremor returned. I was completely out of sorts.

Then I sat for my IV last Friday. Saturday, I felt wonderful! Like, I wanted to rock-climb and take a hike kind of wonderful! So…I guess I will see. There were other factors like working at the animal clinic more often and staying on my feet for more than eight hours a day, every day. Hopefully it was not all about the medication.

This month I received the IV in my left arm. Oh, the infamous left arm. Surprisingly, it was not painful and I barely felt the fluid entering my vein. My skin did not bruise or redden during or after and I had pretty good use of my left arm hours after the sit-down.

The only difference from last month was I zonked out afterwards. Last month, rested but did not take a nap. This month, I was out 30 minutes after I returned home and did not wake up for 3 hours.

I forgot to ask off from the gym so I had work in the evening. My pain levels were high, but my energy levels were pretty good.

 

All in all, I think this month was a success.

I am crossing my fingers that this medication will continue to work for me. I do not want to switch medicines AGAIN and have to feel awful for months. AGAIN.

 

Hi, my name is Monica and I have RA.

Progressions

26 Wednesday Feb 2014

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The last two weeks I have felt completely unmotivated in life. This last flare left me tired, run down and painful. I barely drag myself out of bed in the morning, keep up with my gluten-free diet or care about anything. Usually, I would say this is just the depression but my mood has been great.

I lowered the prednisone after the main fire of the flare burned out. However, it is too low a dose. I really should be on at least 11mg but I cannot bring myself to take that much.

My mood is awesome. I have not felt “this good” in a very long time. I feel floaty and fun, I have more energy and overall in higher sprits.

But, I feel like the arthritis is in a progressive stage. No matter what I do or how much pain medication I take I just feel difficult. Everything takes 4 or 5 times more coordination, strength and will power.

It is an oxymoron in my body.

There is more inflammation in my toes and fingers. My knees are slightly more bruised. I have constant back and spine pain. Even my jaw hurts when I chew.

Is this normal?

It does not feel like a flare. It feels like a constant, dull ache.

I should increase the prednisone dose back to 11mg. Maybe the RA is progressing so I have more inflammation, making everything a little harder. What if increasing the corticosteroid is not the answer? What if I consistently have the same amount of inflammation?

Worst yet, my pinky gets stuck in certain positions and I have to massage the joint out of locking. It is super painful, annoying and disheartening. It is only my pinky but I know soon enough my other joints will follow suit.

 

Hi, my name is Monica and I have RA.

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

27 Friday Dec 2013

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I thought I had posted this and turns out I never did!! Yikes!!

 

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

 

Well, the silver is right in there. You may feel lazy for taking a rest day and will not take one, while I can take one and not feel bad about it!

Sure, this is different from playing hooky from work to watch the game at a bar, or sky-diving, or taking time off work to do something fun. I cannot do anything too physical. But, so what? I get to lay in bed, read, Netflix, watch movies, and sleep!

And that sounds like a pretty good day to me!

 

Hi, my name is Monica and I have RA.

Even More Good News!

11 Wednesday Dec 2013

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I do not have to see my doctor for another two months! TWO! Count ’em: TWO! And I do not have to see my gastroenterologist for THREE MONTHS! Count ’em: THREE!

Okay, I do not know if that really has any real significance but in my head it means: no blood work, no keeping a close eye on me, no co-payment!

It may seem I am getting better. I might be. However, I think I finally hit a plateau. I may not be getting better but more importantly, I am not getting worse. Which means, I am managing!

I would really like to be better, but hey, at this point, I will take what I can get!

I am still having trouble with my fingers and wrists, fine motor skills seem to evade me sometimes. But I manage to push through.

The only thing my doctor is not pleased about is I went from 8mg to 11mg of prednisone. I should have stayed at 8mg or hopefully even 7mg! Given I cannot lower the pred right now (I will totally lose function of my hands), I will start a bone-calcium supplement prescription thing (can you tell I have not researched this medication yet? :P). I need to get an exo-scan and I will be all set!

Plateau! Yay!

 

Hi, my name is Monica and I have RA.

A Little Good News

06 Friday Dec 2013

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Well, self-made good news.

I am climbing again! In the evenings so my nail painting schedule has gone a little wonky. But, I am climbing again!

The best part is, my stiff and painful joints are better, my mobility is better, and so is my endurance. It was just a few weeks ago  I could not even get up a 5.9 without feeling like I was getting worse. Now, I am scurrying up 5.10s with ease. Well, more ease 🙂  I can even do five or six climbs during one session! This is a huge step in the right direction.

 

The difference comes from me focusing on my grip. Even though, in general, my joints feel better, my fingers are still a bit of a problem. I seem to have lost some fine motor skills but I can climb longer if I do not hold on to the holds very hard.

I focus on my leg and footwork and it really pays off! I pull less with my arms or “straight arm” the holds and it really alleviates some of the stress on my upper body joints! (Straight arming means keeping the entire arm straight, what this does is re-allocate pressure from the muscles to the skeleton).

I guess it is true what they say, a boulder that continually rolls gathers no moss.

 

Hi, my name is Monica and I have RA.