Tag Archives: pain

It’s Okay to Hate My Life

28 Tuesday Feb 2023

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2023 started out rocky. But, is this any different than the beginning of any other year within the last decade? No.

Every year with this horrible autoimmune has been nothing short of torture and I’m sick of it. I really don’t know what I did in a previous life for this to happen. I realized, recently, how often I say “I just have to deal with what’s thrown at me” or some variation of “that’s just how it is”. How many times have I said “hey, something finally goes my way” or “I have great news” in the last week? Month? Year, even? Honestly…maybe less than five times.

My disease management was non-existent so my rheumatoid arthritis flared. Being under a constant onslaught of symptoms really made me realize just how much of my life is dictated by this illness. And you know what, I hate it. I hate this disease and I hate my life. And that’s okay.

Now, don’t get me wrong. I am so grateful for so many things: I generally stay “normie” healthy, I never got COVID, I never feared for my life. I have medical insurance and I can afford it plus school, my pets and have some money left over. I am grateful I have a roof over my head and can buy food. I do have a really good life but UGH.

Why must I take 11-12 pills every morning (then another 8 in the evening)? Why is every movement dictated by the swelling. Why does pain decide how my day will shape up? And why even when I want to curl up into a ball and stop dealing do I have to live a normal life and pretend everything is ok?


When do I win at life?

I feel like I fight a losing battle every day, week, and month. My joints and bones deteriorate and I even think my brain is losing its edge. If I slide further down the slope of life, what exactly am I looking forward to? What’s the good in my life?

I eat well and feel the same as when I gorge on junk food. I exercise and harm my body. I drink water until I drown and am dehydrated. I take medication after medication and am inflammed. I fight for a third-rate life, nothing better.

The constant disability really gets to me. My brain doesn’t feel disabled so neither does my body. And then, before I know it, I push myself too hard, I’m laid up in bed, crying as I try to feed myself or get up the stairs.

What did I do to deserve this?

And this disease doesn’t dictate just my every day life. It controls EVERYTHING. It controls EVERY decision I will ever make. Where I live (can I get proper healthcare and access to my medications?), where I go to school, what I eat, what I can accomplish during the day, my work, my family, and ANY decision I might have about my future.

And, if I got to graduate school. Can I handle it? I make sacrifices every day. What more will I have to give up for the same opportunity as the average person?

It’s not like things are good when my RA is managed, either. I never seem to catch a break. I get an infection, my body turns on itself, or my organs hate me. There is always something more.

But, truthfully, the worst about any of this…I remember what it was like before the rheumatoid arthritis. I remember what it was like when I able-bodied. Damn, life was so good. I don’t think I took it for granted…I just didn’t know that I could lose it. I didn’t know that I would lose everything because my body couldn’t figure itself out.

I know it could be worse but there are still times that I just hate all of it. Why did this happen? Why me? Sometimes, I hope I die young because the idea of living like this for ten, twenty, thirty plus years just sucks. And, it’s okay for me to acknowledge this. My life is not easy-peasy-lemon-squeezy. My life is difficult and that is also okay, I guess.



Hi, my name is Monica and I have RA.

What Keeps You Up at Night?

29 Friday Sep 2017

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What keeps you up at night?

For me there are a few things: the pets wandering around, worrying Affie might have another seizure, pain, tossing and turning to find a more comfortable position, the scratch of the fan spinning about but, the most annoying one of all, needing to crack my right ankle every few minutes.

If you’ve ever had to crack your knuckles, you know there is this feeling of empty space inside that joint. I never experienced this until my Rheumatoid Arthritis got a little worse. In fact, anyone who knew me back in high school would tell you I had a severe phobia of the sound of cracking knuckles. Once my joints freaked out, I got over it. I had to or I would go crazy.

Everyone has mixed opinions on cracking joints. Many say it’s not good and weakens the ligaments and tendons over time. Other say this is not case and there is only an air pocket trapped inside.

When I first noticed the sensation I cracked my ankles and experienced and extraordinarily sharp pain. As I continued the motion the pain ebbed away.

Now, I crack my ankle every few minutes, especially at night, thankfully with no pain. I try not to but the feeling keeps building and building until it is actually painful. I’ve never heard of this type of pain in people who habitually crack their joints. Is this a by product of my chronic illness or does everyone get this but they just crack their joints so frequently they never get to the point of pain?

 

What keeps you up at night?

 

Hi, my name is Monica and I have RA.

What Happens When All That’s Left is Pain? | Rheumatoid Arthritis

28 Wednesday Sep 2016

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It is almost 3 am and I am wide awake. A constant symptom of Rheumatoid Arthritis is pain. Sometimes, the pain is bad but I take medications to  restrict it. I hurt every second of every day but I suffer from a dull ache and not a sharp stab.

I am used to chronic pain and since I am, shouldn’t I be used to any type of it? No, it’s the complete opposite! I am not used to punctuated burst of pains. I feel agony when my tooth/jaw hurts and as a result, I turn grumpy, depressed and restless (hello insomnia!).

 

I am in a really foul mood. The weather is cloudy and rainy (but warm! — my favorite) so I am decorating for Fall. I love this time of year but I can’t enjoy it! Cue an even worse mood. A simple conversation or thought triggers my depression but this terrible, horrible, no good, very bad day is not brought on by any of the usual culprits. It’s the severe irritation in my gums.

 

It’s a vicious cycle, isn’t it? My tooth aches, so I can’t sleep since the pressure from my pillow creates an intense surge of discomfort. I don’t rest so I flare up which adds a separate sort of pain into the mix. Pain makes me feel sad and isolated. Sleep deprivation makes me fatigued and stressed so I clench my jaw making that pain worse.

 

RA is so…strange. And, not for the reasons above. I say ‘strange’ because of all the extra things, the extra occurrences I never considered or prepared for! But how can I prepare for a toothache? If I didn’t have an autoimmune, would it feel more or less painful? Would it matter?

Yes, which came first? The chicken or the egg?

 

Hi, my name is Monica and I have RA.

Pink and Purple Asymmetrical Dotticure Nail Art

16 Saturday May 2015

Posted by in Nail Art

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As a kid, one of my favorite past times was “sailing”. I placed an empty laundry basket in the middle of the laundry room floor, fill it with snacks, hydration, books, and blankets and pretend I was in the middle of the sea. I was shipwrecked until I reached land.

After my father helped me out of bed I grabbed anything and everything I could possibly need for the rest of the night. Once I stand up and am leaning forward, I can move around relatively easily. Relative, of course, to getting out of a sleeping or sitting position.

I grabbed my various technologies, books, magazines, nail polishes and anything else I thought I might need and curled up for the evening. I was not in the mood for too intricate a nail art so I settled on a fun asymetrical dotticure! I hope you like it!

 

1-DSCF6367_fotorI started with Pahlish Reinette as my base.

I detailed with Milani Power Periwinkle, Barry M Grapefruit and Rhossilli.

 

1-DSCF6357_fotor

Hi, my name is Monica and I have RA.

Blue Saran-Wrap and Water Decal Nail Art

16 Saturday May 2015

Posted by in Nail Art, Reviews, Rheumatoid Arthritis

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Question: Would you prefer I separate my RA and nail art posts so if you are only interested in one or the other you don’t have to read both? I will provide links to and from each post.

 

 

I posted this on Instagram last night as I had some weird hip pain and struggled to find a comfortable typing position. Right now, I have no range of motion. I am in excruciating pain every time I move.

I’m not sure this is a flare. During my typical episode, I am painful throughout my body, I am nauseaous, tired, and fatigued. Today’s discomfort is acutely concentrated in my hip area and just when I move. I feel alert, hungry,  and in any other manner, great. I am struggling to move yet I want to. I don’t know why this is happening. I woke up in the morning and I felt great I was in no pain I climbed the stairs and all of a sudden it hit me during breakfast. My morning routine was the same.

 

But, before I get into the nail art…I’m going to quickly talk about how I clean the house.

I clean house on my days off from work. This way, I can “schedule” tasks around my high and low pain points. I mentioned in another post, my sweet spot for pain is about two hours after I take Tramadol and Tylenol. This would be when I start the heavier cleaning like vacuuming. I rarely ever start before this two hour mark.

Once I’ve finished vacuuming I take a nap.  I’m serious. Personally, Vacuuming takes the most effort and when I’m done I’m usually very tired. This is the perfect time for a nap. It’s okay though I have the entire day.  two hours is usually the longest I allow myself to sleep, otherwise I I cannot go to bed at night.

 

When I wake up, I eat and hydrate and finish by dusting. I use a Swiffer duster wand so with one quick swipe I’m all set. Laundry is for another day.

 

Now, onto the nail art! I decided to go with a blue cling wrap. I loved the marbelized water look. My new Chanel polish called to me so I centered the entire color palette around it. I needed to add more but a black decal would not show up. The pack of Pueen Cosmetics decals I bought came with an assortment of white ones as well. The last time I tried one it disintegrated while I removed it from the backing. I had low expectations of these flowers but they worked quite nicely.

I hope you like it!

 

Blue Marble Cling Wrap Nail Art | The Rite of Aging

Blue Marble Cling Wrap Nail Art | The Rite of AgingI started with 3 coats of Glitter Gal True Blue Aussie as my base. Llarowe was having a massive sale on this brand and I picked up a few on a whim. This dark blue polish was very squishy, almost jelly-like and dried very glossy. However, it pooled into my cuticles and stained them badly.

I bubble-wrapped with Chanel Mediterranée, Glitter Gal Bluemerang, and China Glaze UV Meant to Be.

Blue Saran-Wrap Polishes | The Rite of Aging

Hi, my name is Monica and I have RA.

The Good Pain

13 Wednesday Aug 2014

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It exists! Good pain!

 

Two weeks ago, I climbed for 5 days straight, two to three hours each session. First of all, I know right? That sounds a) completely unbelievable and b) totally regrettable. But, guess what? I felt amazing. I hurt but it was all muscle pain and no, it was not “I strained a muscle and now I cannot move”, it was “I had a great workout and now my muscles are repairing and strengthening themselves”!

I texted a good friend of mine on staff to tell him I was in pain and at first he thought it was a flare. I gushed over how great this good pain felt.

I forgot what a good workout felt like. I felt mobile, happy, charged, and overall “normal”.

 

…I dislike using the word “normal”. My normal no longer exists. My RA-ridden body is the new norm yet I still remember what “normal” feels like.

This is probably holding me back, mentally. I do not mean, life-wise, getting a job, moving around, living…I mean, I cannot move forward with this disease. I keep hoping it will go into remission, I will go back to the way I was.

 

All of that aside, I was thrilled. I remember way back in high school my muscles ached when I climbed too hard and I felt painful and uncomfortable. I remember my annoyance when I pushed my body too far when I shouldn’t have. I knew my limits and ignored them.

Now, I love this pain. The muscle pain reminds me I am still able-bodied, I am still capable, I am not just the RA. I still have limits and push myself past them.

 

How strange, right? My perception of pain completely changed. Regardless, I still have to pick and choose my battles like whether I should climb or cook the dog food, I still cannot do both in a day.

 

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.