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Category Archives: Rheumatoid Arthritis

It’s Okay to Hate My Life

28 Tuesday Feb 2023

Posted by MonicawithRA in Rheumatoid Arthritis

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anger, autoimmune, chronic illness, pain, 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.

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As the Blood Spills…

29 Thursday Sep 2022

Posted by MonicawithRA in Rheumatoid Arthritis

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Tags

abnormal menses, chronic illness, fatigue, menstrual cycle, period, rheumatoid arthritis

Disclaimer: period talk, blood

Anemic and Exahausted black lettering. Multiple red splatters in the backgorund.

My rheumatoid arthritis (RA) has been on the back burner for a little while. My biggest health concern since I moved across the country is severe, debilitating anemia. But, unlike many of my symptoms, I know why I am anemic.

Since April 2021, I have experienced abnormal menses. Let me be specific. Since April 2021, I bleed for 3 out of 4 weeks, every month. No, actually, let me take that back. My menstrual cycle is normal. I get my period at the same time every month, it lasts for the same amount of time and ends like clockwork. The abnormality lies with how much I bleed the rest of the month.

At first, I experienced intermittent blood loss. I’d bleed for a few days, it stopped, and then re-started 12-24 hours later. It was never “period heavy” but, it was still noticeable.

Let me preface this all by saying that I am very good at keeping track of my RA symptoms. I keep a food/medicine journal where I detail any symptoms, habits, and activities. However, I am absolutely terrible at tracking my period. I tell myself to mark it down, forget and that’s all they wrote. For three months I wasn’t entirely sure anything was wrong. I had an inclining but no certainty.

I moved in August 2021 and hit the ground running. Oddly, my period normalized for two months. This good fortune did not last, however because in October, I started to bleed for three weeks; but now, I bled in a big chunk with a heavier flow.

If I wasn’t anemic before I definitely was now. I had to sit for iron infusions. Due to scheduling conflicts, I did not start them until February 2022. I sat for one a month for three months. My blood levels increased. But, only for a little while. Soon, my hematocrit and hemoglobin plummeted once again. I had full blood panels done. My levels were normal, including my thyroid and hormones. My specialists couldn’t figure out what was wrong. I went to my primary nurse practitioner (NP) who referred me to a gynecologist. She made a great point that even if I sat for an iron infusion every month it would never counter the continuous blood loss.

The gynecologist did a pelvic exam and an ultrasound and everything was normal. There were no polyps or cysts, no inflammation or anything that could explain the bleeding. So we started to think of solutions. I couldn’t continue this way. I was exhausted. I fainted when I stood up and my extremities went numb if there was pressure on them. So, we started a list:

hormonal birth control pills? No.

I had used them a little while before due to an ovary issue (a different story) but get this, they made me bleed EVERYday! That was not an option. What else?

An IUD? Tried it (updates to come)

It did not work.

The third option?…Sterilization.

And, what’s funny is I always wanted to get a hysterectomy (uterus & cervix removal). I never wanted to birth a child. I would much rather adopt or foster. I do not want to take the chance of passing on my chronic illness genes to another person.

Ideally, I’d wait on the hysterectomy because it is an invasive surgery and I have an autoimmune condition. There are a lot of risks and my recovery is at least 50% longer than the average healthy person. Time is a factor. Do I have the time (with school and work) to lay up for 8+ weeks?) No. I wanted to wait until after vet school. It was always an elective surgery I wanted in the future. I never thought it would be a medical necessity.

Now, here’s the thing. Insurance in this state is shit. It doesn’t cover my medications and barely covers my RA infusions. It won’t cover the surgery even if it’s medically necessary. I just cannot afford a big surgery right now, point blank. As much as I need this surgery it will have to wait.

Here’s the problem. I’ve hit a critical point. I now bleed heavily for three weeks (“period heavy”). I am in school and I need to be alert and functional; which I cannot be while so anemic. It also puts me in a vulnerable position to catch colds, flus, coronaviruses, and other nasty illnesses. At this rate, I will continue to feel more and more ill. I need/WANT relief.

It kind of bothers me that I don’t know why this is happening. I believe that everything has a reason yet we cannot figure this out. I tend to blame everything on my chronic illness so I am going to do that again. I don’t know how but this is the RA’s fault! Here’s the thing, though. Plenty of females have inflammatory conditions, take the same medications I do, and do not experience such torrential menstrual cycles. Maybe this time it’s not the RA. I want to find the cause for this bleeding but mostly, I want a fix. I have had my fair share of periods and I am so over them. If I never had one again, I would be on cloud nine.

Hi, my name is Monica and I have RA.

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Just Some of the Reasons I’m Stressed || #stress #disability

13 Sunday Sep 2020

Posted by MonicawithRA in Rheumatoid Arthritis

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disability, rheumatoid arthritis, stress

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Let’s start with the obvious. My medications are not working as well as they should so they cut out early (before my next dose) and I become fatigued and painful.

This has always been a problem but now that I am in school and I need to focus, study and retain information, it’s just a bit harder to function properly when my body doesn’t cooperate.

My eyes are tired dry from Sjogren’s. I cannot read a computer screen or a device screens for long periods of time. I have to take frequent breaks which just eats away quickly at the day. I hate glasses and that I have to wear them all the time. I cannot wear contacts. I hate that I have to constantly push my glasses up the bridge of my nose. I hate that they fall off, especially when I look down or sweat. I hate that because they move around so much I get headaches. I hate glasses.
I hate that they don’t even make my contact prescription anymore. I have to buy them just slightly higher and lower than my actual prescription so I just can’t see. I hate that I have to wear glasses. I hate that I get headaches.
I hate that I wake up every morning with a sinus headache that carries through the day. I hate that I am on medications that cause these stupid sinus issues.
I hate that I wake up in pain. I hate that I am in pain every second of every day. I hate that this is my life.

I hate everyone who goes out without a mask and takes selfies with people who are not in their quaran-pod. Great, you social distance and wear a mask…but take it off for a photo? You’re an idiot and you’re the reason why this pandemic carries on the way it does. I hope you are not responsible for someone’s death; but, you probably are. Think about that for a second.
You ARE definitely responsible for me not being able to go back to work safely. So thanks.
I hate that I didn’t get my stimulus check. I hate that I make less than 50% of what I made before. Money is tight. I have four pets to care for and now I have to pay for school.
I wonder every day is this really going to be the rest of my life. A life where I am enslaved to my body. A life where I hate waking up every morning because I have to put on glasses that don’t fit and feel pain with every movement and hate everyone because they’re stupid and selfish. How sustainable is this type of life? It’s a not a good life. It’s not even an okay life. But, I just have to deal and get on with it. Wow. Can you imagine, waking up and not looking forward to anything because it all sucks?

Yeah, that’s pretty damn pathetic. But, it is what it is. And that’s just too bad for me.

Also, this new WordPress is real shit. WordPress, why did you have to fix it? The other editor was perfectly fine. In fact, it was perfect compared to this mess of a situation. I would switch platforms but I paid for this domain for a year. ::Shrug::

Hi, my name is Monica and I have RA.

Like what you see? Please consider supporting my content by donating through PayPal or Venmo: @Monica-Sengupta!

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What You Don’t See 7/4/20 | #invisibleillness #rheumatoidarthritis

04 Saturday Jul 2020

Posted by MonicawithRA in Rheumatoid Arthritis, What You Don't See

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rheumatoid arthritis, What You Don't See

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What You Don't See Chronic Illness Invisible Symptoms Rheumatoid Arthritis | Monica with RA Beauty BloggerWhat You See…

This photo was taken Friday or Saturday night before I went out. I applied a dark brown eyeshadow over my lid (to minimize the appearance of swelling), smudged an eye pencil across the top and bottom lash line, and added a couple of swipes of mascara. A well-placed highlighter and lip gloss revived my pale countenance and made me look a bit more alive.

What You Don’t See…

Behind the forced smile and bright eyes, I was beyond fatigued. I wasn’t in a flare or in a lot of pain but my body was just spent. What people didn’t realize is it took a lot more energy than the average able-bodied person, to complete simple tasks. By the end of the day, I was tired and ready for bed.

‘Cancel your plans,’ you say! Ah, if it were that simple. Occasionally, I have to show face at hangouts.
When a healthy person says they are too tired their friends might say “that’s okay! Next time!”
When an ill person says they’re too tired their friends ASSUME the person will bail the next time, and the invites stop.

I have to make an insane amount of effort to socialize. It sucks sometimes because I like being around people but it just takes energy I just don’t have!


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What You Don’t See 6/18/20 | #chronicliving

18 Thursday Jun 2020

Posted by MonicawithRA in Rheumatoid Arthritis, What You Don't See

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invisible illness, invisible symptoms, What You Don't See

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Chronic illnesses like Rheumatoid Arthritis, or Rheumatoid Disease, are often called invisible illnesses because their symptoms, though rampant, are not seen on the outside. You cannot see the fatigue and pain I experience daily. You cannot see the swelling and immobility that happen around my joints. And, often, you cannot see a host of other problems that are adjacent to my autoimmune disease.

What You Don't See Series Chronic Invisible Symptoms Illness | Monica with RA Blog Rheumatoid ArthritisFor this photo, I did a fun smokey eye because I was feeling better after my flare. While the pain and inflammation were a lot less I was still dealing with other issues.

Most notably, every time I moved or fixed my hair, strands upon strands of it fell out.
This is a new phenomenon and if you look at my hair pulled back you can see some thinning and bald spots.
From this photo, you can see a well-placed hairstyle can hide all of that!

Interested in my previous installment of the series? Check it out here.

Hi, my name is Monica and I have RA.


Like what you see? Please consider supporting my content by donating through PayPal or Venmo: @Monica-Sengupta!

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Satisfied Sunday 6/7/20 | #gratitude

08 Monday Jun 2020

Posted by MonicawithRA in Just for Fun, Rheumatoid Arthritis

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gratitude, pets, satisfied sunday

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Sunsilk Sengupta Gratitude Satisified Sunday | Monica with RA blog Chronic Illness Rheumatoid Arthritis Grateful and Love

There is a lot going on and with the discussion of privilege so prevalent in our society, it feels awkward to talk about the good things happening in our lives. But, I think it is important to acknowledge that good things are happening and we are grateful for what we have.

This week I am grateful that Sunsilk (and Affie) are still alive and healthy. They are both quite old. Sunsilk is 17 and Affie is nearly 15. I don’t know how much longer I have with them so I am making the most of the time I have left.

What are you grateful for this week? Let me know in the comments. 🙂

 

Hi, my name is Monica and I have RA.


Like what you see? Please consider supporting my content by donating through PayPal or Venmo: @Monica-Sengupta!
(Please note, any contributions will be donated to charities supporting black activism)

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What You Don’t See | #chronicliving #rheumatoidarthritis

06 Saturday Jun 2020

Posted by MonicawithRA in Rheumatoid Arthritis, What You Don't See

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Tags

invisible illness, invisible symptoms, real symptoms, rheumatoid arthritis

Nothing to disclose.

What You Don't See - Rheumatoid Arthritis Invisible Illness Invisible Symptoms Blog Post | Monica with RA

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The thing about invisible illnesses is in the name. They are invisible. Most of the time you cannot see the symptoms as they present themselves. From looking at a person with a chronic illness, like Rheumatoid Arthritis, you cannot see the pain, the fatigue, and the constant battle their body fights against itself.

What You Don't See - Rheumatoid Arthritis Invisible Illness Invisible Symptoms Blog Post | Monica with RAI took some makeup selfies the other day with Sunsilk and looking back on the photos you could never guess that I was in a terrible flare.

What You Don't See - Rheumatoid Arthritis Invisible Illness Invisible Symptoms Blog Post | Monica with RAWhat you saw: an ear to ear grin because it was sunny, I was wearing makeup and I was with my cat.

What you didn’t see: that my skin was dry as a desert, that my lips were chronically bleeding and my hair was falling out in clumps.


What You Don't See - Rheumatoid Arthritis Invisible Illness Invisible Symptoms Blog Post | Monica with RAPeople with invisible illnesses are great actors. Even while we feel sick and terrible we have to play “able-bodied” and march on with life.

What you see: I walk my dogs at least two hours a day without a grimace. I clean and change the cat litter. I bend down to pick up Affie and Sunsilk. I climb the stairs to the kitchen to feed them. I cook their food.

What you don’t see: I am in so much pain it takes my entire existence to move. I experience so much of it I seriously consider taking a drill to my foot because that pain is probably less than what I feel right now.

 

What You Don't See - Rheumatoid Arthritis Invisible Illness Invisible Symptoms Blog Post | Monica with RADon’t get it wrong, I don’t always feel THIS bad but when I do, I can’t call in sick to my life. I have to keep moving forward.

Just remember, what you see in a photo is never the whole story. There is always something you don’t see.

 

Hi, my name is Monica and I have RA.


Like what you see? Please consider supporting my content by donating through PayPal or Venmo: @Monica-Sengupta!
(Please note, any contributions will be donated to charities supporting black activism)

The thing about invisible illnesses is in the name. They are invisible. Most of the time you cannot see the symptoms as they present themselves. From looking at a person with a chronic illness, you cannot see the pain, the fatigue, and the constant battle their body fights against itself.

I took some makeup selfies the other day with Sunsilk and looking back on the photos you could never guess that I was in a terrible flare.

What you saw: a ear to ear grin because it was sunny, I was wearing makeup and I was with my cat.

What you didn’t see: that my skin has been dry as the a desert, that my lips have been bleeding and my hair is falling out in clumps.

People with invisible illnesses are great actors. Even while we feel sick and terrible we have to play “able-bodied” and march on with life.

What you see: I walk my dogs at least two hours a day without a grimace. I clean and change the cat litter. I bend down to pick up Affie and Sunsilk. I climb the stairs to the kitchen to feed them. I cook their food.

What you don’t see: I am in so much pain that I seriously consider taking a power drill to my foot because that pain is less than what I am feeling. Every move I make takes my entire existence but, I keep going because I have to.

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