Tag Archives: autoimmune

It’s Okay to Hate My Life

28 Tuesday Feb 2023

Posted by in Rheumatoid Arthritis

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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.

Dumb Sh*t People Say….Part One

21 Saturday May 2016

Posted by in Dumb Sh*t People Say Series, Rheumatoid Arthritis

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“I heard exercising cures RA. You should just do more of that!”

And I heard if you shove your head far enough up your ass you can see your stomach!…

Okay, so that is a little harsh. But…not really.

 

If you do not live with chronic pain or a physically disabling autoimmune you can’t imagine what it feels like. You can’t google Rheumatoid Arthritis and immediately understand what it means to have it. You don’t know, well, until you know!

 

Long ago I stopped giving people the benefit of the doubt. Many say I’m too severe and expect too little of them. But what I’ve learned is people just want to sound intelligent. They love to sound like they know what they’re talking about. It’s human nature to be superior. Lao Tzu, the founder of Taoism, once said “Those who know don’t talk. Those who talk don’t know”. The above statement is a prime example of this.

I realized that when people talk it is not because they care but so they feel better about themselves. They think that if they look up a few facts on the internet, regurgitate the information I give them, they sound caring. In reality, they just annoy me.

Yes, you’re partially right. Exercise does alleviate symptoms of RA, however, too much of it can have the opposite affect and do more damage than good. Why? Too much motion and repetitive motion exacerbates inflammation around the joints, causes the immune system to react and attack. I probably don’t have to mention that there is no cure for the keyword: chronic autoimmune condition. So, no, I can’t just exercise the RA away but, gee, thanks for trying.

 

Hi, my name is Monica and I have RA.

RA-Eats: Fast & Easy Avacado on Toast

25 Tuesday Aug 2015

Posted by in Rheumatoid Arthritis

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One of my favorite snacks is avacado on toast. It is fast, easy, and yummy! An added bonus is how great it is for RA or any autoimmune patients. The avocado and olive oil are chock full of nutrition that keeps symptoms in check and joints nice and limber.

 

Ingredients:

Two or three slices of bread, toasted (can substitute for gluten-free alternatives)

1 ripe avacado

2 tbsp olive oil

salt and pepper to taste

 

ra-friendly avocado on toast

I toast the bread and spread a little butter. I have a severe salty tooth and the butter hits the spot!

I mash the avocado into a paste and salt and pepper to taste. If I am feeling lazy I spread the avocado directly on the toast with a knife and add salt and pepper.

I drizzle about 2 tablespoons of olive oil over the avocado and on the plate because I love sopping up oil with bread!

-If you want to make this a protein-punched power snack fry a couple of eggs and pack them on top!

 

To make this recipe even more RA-friendly, eliminate the butter (which increases inflammation in the joints) and salt and replace the bread with a gluten-free alternative.

 

 

So…

Why are avacadoes, gluten-free bread and olive oil good for autoimmune patients? I did a little research and compiled the more important points below!

Avacados are an extremely high-fat food. However, these monounsaturated fats are good for you. They are easier to digest and maintain the body’s good cholesterol. Eyesight problems increase as autoimmunes progress and avocados are high in the vitamins and minerals that protect the them. Avocados also contain a lot of omega 3 fatty acids which help digestion, control blood pressure and keep hair and skin healthy!

Olive Oil has similar benefits to avacados and this is why, in part, the two compliment each other so well. Olive oil is also a monounsaturated fat. It maintains a healthy blood pressure and reduces the risk of diabetes and certain types of arthritis. Olive oil is also high in antioxidants which help combat oxidative stress to the body’s cells.

Many autoimmune patients are sensitive to gluten, as inflammation from other parts of the body may spread to the gut. Gluten causes irritation and becomes difficult to digest. This, in turn, sets of an inflammatory response in the rest of the body. Many swear by the gluten-free diet! I personally hate it. I have switched to gluten-free granola and pastas but when I am fully gluten-free my energy levels tank!

 

I hope this post was interesting and helpful! Let me know if you like avocados (or not!) and eat this snack already!

 

Hi, my name is Monica and I have RA.

Pissed-Off Prescriptions (Long, Long Post!)

02 Monday Mar 2015

Posted by in Rheumatoid Arthritis

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I am stopping my medications.

 

Just kidding…

 

I am sure you noticed the increasing “security” around prescription drugs and the increasing difficulty of obtaining them (don’t I sound like an addict right now…) And, if filling and picking up the prescription is a piece of cake, paying for them is not, even if you meet your insurance deductible.

Today’s post is not about my specialty medication but my everyday run of the mill prescriptions. Enjoy!

 

prescription meds

 

Before we get into the lovely narcotics let’s work start with literally the most boring supplement ever..

 

I take a weekly Leucovorin Calcium tablet. It is a folic acid supplement that counters the effects of my chemo medication, Methotrexate. It protects my red blood cell counts and reduces my nausea. Honestly, I am not sure what happened but back in December I ran out of pills. I called for a refill and my insurance declined it. Apparently, they would not refill for five weeks! I thought I only took two extra pills when I missed my weekly injections…why wasn’t it covered? This was most certainly not a opiate. It probably had a negative potential for abuse.

I could purchase four pills at $5.00 a pop to tide me over but I refused to give in to this insurance craziness

You guys know me well now, I am a proud consumer. I like spending money, I like buying things. But, you know what I have a problem with? Paying for things I ain’t supposed to be paying for! (CVS has such a great rewards program all my purchases average 50% to 60% off, Bath and Body Works, about 70% – if I cannot manage a good discount I don’t purchase!) I stopped the medication for four weeks…and my dad really yelled at me for it. Okay, for good reason too…My hair fell out and I was all sorts of lethargic. Regardless, I stood firm…but, enough of the boring medications…

 

It’s now time for the fun stuff! Let’s start with Tramadol, the least aggresive of the two narcotics I talk about.

On my “foggier”, more flared up days I felt like my brain was deteriorating and decaying from the inside. I sometimes did not even remember conversations while I was having them! I tried to lessen the amount I worried about by placing my prescriptions on “Auto-Fill”. The pharmacy refilled medications as early as seven days and paid me a courtesy call when they were ready for pick-up.

Tramadol is now a Class IV substance. It has always been considered a “controlled” substance but with the new classification pharmacies were no longer legally able to fill the prescription before its due date. On top of that, they need a new written prescription every few months.

My pain medications are one of the more important pills I take on a daily basis. They take away my pain and allow me to function (How much more do I sound like an addict now?) What if I cannot get to the pharmacy that same day? Am I supposed to go without painkillers? It’s not the biggest deal in the world, just a little extra work. Speaking of extra work….

 

Now it’s time for the really fun stuff!

Vicodin does not make my daily medicine list. It does not even make my monthly or bi-yearly list. It is reserved for those special occasions when I f*ck up my spine so badly the pain radiates throughout my entire body (I rarely curse on the blog but this pain warrants that language). My spine is the few areas that are not as affected as other joints except during very, very bad flares.

 

We got a snowstorm last weekend. An actual snowstorm, with at least five or six inches of accumulation. I got a true snow day which unfortunately, includes shoveling. I only freed the back and driver’s side of my car so I could get out the driveway but I felt it in my lower back. I added insult to injury and gave Saachi a bath. While she was in ICU she refused to pee until she could no longer hold it and urinated in the cage. She was a stinky pup but I had to wait for her suture line to heal over the two week recovery period. It was easy to give her a bath but it was activity I was unused to.

As I was getting ready for bed I knew I was going to pay for the extra work the next day. I was already in discomfort but I could feel the acute tingle creeping in. Usually, sleep healed my pain but this time it was not enough. I was fighting a sinus infection and a flare and there was just not enough energy left over.

I called my doctor for a Vicodin prescription and asked his medical assistant to fax it into the pharmacy for me. Guess what? The FDA also re-classified Vicodin as a class II drug. This meant faxed-in scripts were no longer accepted. I had to physically pick up and submit the prescription myself.

ARE YOU FREAKING KIDDING ME?

The last thing I wanted to do while my spine was out and could not even bend down was drive to my doctor’s office, drive to my pharmacy and wait for the drug!

At the time, the idea of driving made me sad so I asked her to mail me the prescription which postponed my access to the painkillers by a couple of days…

 

Eventually, I got my pills, I filled my prescriptions, I did not even pay through my nose for them…it was just getting tougher and tougher to get hold of them.

 

Have you had trouble with any medications? What has changed over the past few months?

 

Hi, my name is Monica and I have RA.

 

 

September Infusion

08 Wednesday Oct 2014

Posted by in Rheumatoid Arthritis

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Be ready to laugh! I sat for my last IV infusion in September! If you’ve been following my blog you know why this is hilarious. With the reimbursement nightmare spanning nine months I stopped the infusion until I got my money back. Last week’s blog post was about the extreme fatigue I experienced while off the medication so my doctor was thrilled when I re-started the infusion.

Maybe…

First, I didn’t feel any better. I expected to. But, I didn’t. The first time I sat for the infusion I felt so good the next day, I went on a four hour hike. Honestly, I expected miracles. They never came. Okay, I shouldn’t be so harsh, I did feel less tired but that was it.

The worst bit was the return of two infections. One was a sinus infection I’ve battled since who knows when. I had corrective sinus surgeries, in college, because of infections and debilitating headaches. In high school, they got so bad I took too many sick days (the longest was a week). Apprently, there was no point in getting those invasive surgeries because I still battle these infections (remember when I ended up in hospital because of them?) I was fine until I started the Orencia, which unfortunately suppresses the part of the immune response that also fights sinus infections. Just my luck!

I am also dealing with a recurrent yeast infection. I started getting them in April. At the time I actually  didn’t know they were infections and thought the symptoms were side-effects of prolonged Ambien use (the only medication change in a few months). Turns out yeast infections are side effects of prednisone use and because I have to increase every so often I am more prone to them.

 

I was really bummed because during the two months I was off the Orencia I did not have any sinus headaches! I slept with all my pets through the night without any problems and I rid myself of yeast symptoms, as well! Hooray!

Until the infusion…

Like clockwork, both infections came back full force. My headaches rivaled those I had back in high school and the yeast infection? Well, those are just annoying.

Thankfully, I had my monthly rheumatologist’s appointment the following week so I sat down with my doctor and we discussed my options. I needed to stay on biologic and, unfortunately, Orencia did the best job of suppressing my RA symptoms. He agreed the side effects were too much so we compromised and decided to make the switch back to subcutaneous injections. They are weekly, self-injections so the dose is lower. Hopefully, I will maintain my condition and the other symptoms.

I never felt as great on the sub-q injections as I did on the IV infusion but honestly, I am willing to feel a little bit more ill so I can feel a little less sick.

 

Seriously, this situation is funny given how much hassle I went through just to stop the medication. Again. How many times have I switched medication in the last three years? I’ve lost track.

However, sub-q injections have their perks. I no longer have to schedule off from work, I do not have to have to drive to my doctor’s office and sit with an IV in my arm, I do not have to sleep all day.

 

I’ll take it.

 

Hi, my names Monica and I have RA. H

Fatigue: The Untreatable Symptom

01 Wednesday Oct 2014

Posted by in Rheumatoid Arthritis

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I stopped the Orencia infusion two months ago. The good news: I was not in a lot of pain and I was on a stable prednisone dose; the bad news: I was uncharacteristically tired. Over the last three weeks, I only spent about nine hours awake per day. Nine hours. That is a fourth of a day. I wasted away the last three weeks of my life because even when I was awake I so was tired and groggy I barely got anything done. Driving to the grocery store required a nap; not to mention getting the groceries and carrying them put me over the edge.  I love naps. When I nap I naturally wake up after an hour and a half. Lately, I slept five hours straight. That is not natural.

If I was not asleep, I lay in bed barely capable of anything. I could not break this fatigue. I knew it was because of a flare but I was not in any pain so I did not feel it. My inner demons wondered if I was just lazy since I was on “vacation”. But, if you know me personally, you know I like to keep busy and I feel guilty when I am not. Breaks are not in my vocabulary. For the last three weeks I’ve beaten myself up even though the logical part of me knows it was not my fault.

 

Fatigue is a funny symptom. It is also the most debilitating one. I become so run-down and incapable of normal function. Fatigue is a result of many different thing: overwork, infection, or recovery, to name a few. But, once it hits, I have no other choice but to wait it out. I cannot prevent it nor can I treat it.

Extreme fatigue exists with every condition. Endless money, resources and time go into researching the newest medications but rarely goes into fatigue itself. If I could just control this weariness I could resolve a lot issues. I can manage the pain (with medication), I can deal with the nausea (again, with medication), and I can deal with the immobility (you guessed it, with medication) and none of these carry a candle to the exhaustion. There is no magic pill I can swallow so I have to ride out the storm.

The argument behind the research is if I control symptoms my body would not feel tired from attacking itself. If I control the disease, the fatigue will resolve itself.

 

Maybe fatigue isn’t a symptom after all, maybe it is a side effect.

Either way, I wish it did not exist.

 

Hi, my name is Monica and I have RA.