Category: endometriosis

Plans. Pain! Plans?

It was Sunday, which meant it was time for me to mentally plan and prepare for the week. It would likely be more sensible for me to plan on Saturdays; however my Saturdays are booked and so I plan my week on the first day of the week…

At times those plans are very loose; those are the times when I actually plan to stream programming, read a novel, or watch random videos and listen to music.

This Sunday my plans were not very flexible as far as the tasks I’d intended to accomplish. I planned a set amount of hours that I’d spend on the tasks in order to follow my plan for the week.

Well…here’s the problem – when I planned my tasks for the week I failed to plan for pain. Oddly I failed to even consider the possibility of pain.

Not considering the possibility of pain is odd because I actively live with chronic illness and pain. Well I guess I wanted to think positive and plan my week without the presence of pain.

I am in pain most days of the week, multiple hours in a day; however, when I planned my week on Sunday…I didn’t consider the possibility of pain.

At times I believe that the faith talks dissuade me from practicing self care. In many ways faith talks or willpower talks fault the person going through something and rarely addresses any core problems. When faith talks and willpower talks occupy my mind I believe I am able to not consider the pain I experience on a regular basis.

Somehow That pain pauses until my weekly tasks are complete or at least that was my frame of mind Sunday when I made plans.

Surprise, I know it’s not even going to shock you, pain was not only present while I attempted to complete my scheduled tasks, pain sidetracked me to the point that I was unable to stick to my scheduled events.

I’m not new to chronic pain or illness. I’ve dealt with these things in various forms with varying levels of success most of my life…so it’s amazing that I’m astonished that pain made my plans questionable.

Whether I’ll be able to complete the scheduled tasks this week as planned is a question that will remain unanswered for a few days.

Pain has interrupted my sleep cycle, lack of sleep impacts my comprehension levels which are already lowered as a result of the pain…all of this makes it difficult to complete my tasks I scheduled for the week.

Ok so at this moment I’m accepting the possibility of being unable to complete the planned tasks this week and like many people living with chronic illness and pain. I adjust and do what I can, while thinking to myself “why did I forget to make room for pain?”

What do you do when pain makes your plans questionable?

Symptom Checker

Sometimes I use the internet to search my symptoms…the internet loves to inform me that I have Endometriosis!

Sadly I am always bummed to find that the internet suggests I have Endometriosis. Not because I’m desperately seeking a diagnosis; but Endometriosis?

I’m so tired of Endometriosis! I was diagnosed with Endometriosis definitively 19 years ago and it was suspected 21 years ago! In my mind, Endometriosis should’ve matured and moved out of my body after all of this time!

Ok I am joking but my internet searches are supposed to come up with some curable, easily managed ailment – not Endometriosis!

Get Better

Hello everyone, I’m sure you’ve heard of Leslie Mosier’s Get Better well if you haven’t take a listen and purchase a copy of it! All proceeds to support Endometriosis awareness.

Endometriosis is hard to deal with and awareness is key to improving treatment.

I’m all for supporting causes that help others. Even if you are one of the few people who do not like the song, add it to your library for good measure.

Endometriosis

It’s not always Endometriosis but sometimes it is.

I’m an Black woman from the Midwestern United States who happens possess multiple educational degrees and I happen to have Endometriosis.

Many of you may realize that endometriosis was coined as the career woman’s disease so when I was diagnosed prior to becoming a teenager; I just knew the diagnosis was wrong!

How could I have a career woman’s disease when I was not remotely a woman yet and I did not have a career? At the time of diagnosis I did not even have a high school education.

Unfortunately or fortunately depending on how you look at it, my diagnosis was accurate. I had and still have Endometriosis.

I was happy to know the name of the collections of symptoms I was experiencing; however, nearly immediately I was distraught by the lack of a cure available.

Years later I found out that it wasn’t just Endometriosis, but that’s another story.

Awkward Times in my Life with Endometriosis

That’s certainly Awkward! It’s March, time to pull out my yellow ribbons and raise awareness for this disease called Endometriosis but

I’m Too tired from a seemingly never-ending endometriosis flare to raise awareness during Endometriosis Awareness month!

Oh I know something else that’s really awkward

A well meaning person suggested I try a particular treatment…hmm do I tell them that I a) tried the treatment, b) the side effects of a previously tried treatment means I no longer qualify for said treatment, or c) that the treatment goes against my plans

Oh yeah let’s not forget those people who suggest I have a hysterectomy or a child. I always wonder should I tell them how there’s no cure for Endometriosis even if you do hear about celebrities managing symptoms using certain measures.

That awkward moment when someone questions why I’m having symptoms when I was menstruating two weeks ago.

That awkward moment when someone with Endometriosis questions why our symptoms are not the same.

That awkward moment when someone tries to say Endometriosis.

Really, the word is a mouthful!

I know a lot about my dilemmas with Endometriosis and I have a lot of general knowledge about the disease; however, if there’s anything I’d stress about Endometriosis it is that the disease presents differently in everyone…

Be Aware but please try not to Be Awkward

March is Endometriosis Awareness Month

In the United States and abroad, Endometriosis is starting to be recognized as a disease that affects millions of individuals.

I recall the first time I heard a commercial about endometriosis on television; this gave me hope. Hope that the millions of individuals impacted by this disease would start seeing treatments available and more importantly they would receive a diagnosis sooner.

There’s still a long way to go but I’m encouraged that endometriosis is becoming a recognized disease. Learn about Endometriosis and the Endometriosis Association

Rest required

I have a few chronic illnesses, some that I’ve written about in the past…it doesn’t matter what they are, just know that they exist and they impact every facet of my life.

I recently defended my dissertation (Yay Me!!!) now it is time to focus on job hunting (Why me?) and this is where chronic illness is front and center.

So I’ve lived with these chronic illnesses for many years and I’ve achieved my educational goals…although things never went smoothly…and now I’m exhausted

I have important people to contact, cover letters to compose, and applications to complete…but I’m tired.

I’m not only tired from the arduous process that is a doctoral program…my chronic illnesses are screaming at me to pause temporarily.

My chronic illnesses are suggesting that I breathe, meditate, then rest. Sigh.

As many of you know, application deadlines and all the many things necessary for getting a job fails to account for the fact that your (my) chronic illnesses demand that I rest.

Some of you may even go so far as to say, if I need rest during the application process, I’m likely not able to do the job for which I am applying.

Then there’s others who would say that the PhD process is tedious and the typical person would need a break, so it’s not unusual that I need a break…in the form of a short rest.

The problem I often face as a result of being chronically ill is that I wonder if I’m being lazy or I really need the rest.

Those closest to me suggest that I simply need the rest, but even that’s not always convincing enough to stop my negative self talk

As someone with chronic illnesses, it is hard enough to deal with some outsider suggesting that you are lazy, incompetent and yet many of us, myself included engage in negative self talk when our bodies demand self-care.

I am someone who possesses chronic illnesses, but I’m also more than that. I am someone who needs accommodations, but I’m also more than that. I am more than any identifier I possess…if only I consistently believed that.

Stress induced flare

Ok so here’s the deal, in less than 10 days my dissertation defense will happen and my angst is high

I’m not nervous about what I know as it pertains to my dissertation; but I’m concerned about the what’s next questions that are flooding my mind

This is bad because the illnesses that reside in my body react badly to stress…really bad.

My thoughts are jumbled; I’m frustrated and I’m ready to scream

I must find a way to calm my mind and balance myself.

I must relax or else I won’t make it through my dissertation defense because I’ll be nursing a flare.

Why are my illnesses stress- sensitive ?

Chronic illness identity

Chronic illness warrior, chronic pain survivor, spoonie, chargie, dis-Abled, fighter, and all of the other labels used among individuals who face a myriad of long term illnesses….

It matters little how I refer to myself when I’m at a place where I feel there’s nothing I can do to overcome, conquer whatever my illness has brought to me.

The labels tend to carry little meaning when I’m facing the implications of my illness alone

They matter even less when I’m sitting in yet another physicians or alternative health professionals office and/or waiting room…

So why do I find such comfort in whatever label I choose for the day? Although it seemingly doesn’t change the trajectory of my chronic illness or the acknowledgment of my pain by others?

These labels may have little meaning outside of the communities they create which often transcends an individual’s immediate surroundings.

These labels thrive in cyberspace and it’s easy to see how certain events in the real world are crafted around these labels.

Personally, I’ve found them useful in cyberspace and I’ve enjoyed the disconnect in the connections I’ve created through these labels.

I consider it a disconnect because I only checked into these communities when I felt the desire to…otherwise, I stayed away.

Some years, I was connected to various chronic illness themed communities on a daily basis…I was even an administrator of one such community at one point

But once I received what I needed or at least once my outside support system stabilized, I relied on the amazing community less.

Now, I’m not a part of any particular community of chronic illness individuals. At times, I miss the relational aspects of the communities, I miss the feeling of being a part of something bigger, the feeling of not being alone…but for the most part I don’t miss it enough to immerse myself into any of these communities again.

It became overwhelming as I shared my story, my experiences with so many who could relate…it was sometimes overwhelming to witness the pain and suffering many of those individuals in these groups shared.

Now. I’ll mention various chronic illnesses or pains I endure, but I don’t want to be consumed by it anymore.

My illnesses impact every facet of my life daily…but my needs are different than they were years ago when I had to plug into the communities to maintain a semblance of sanity.

I’m forever grateful for the groups and the amazing people I’ve had a chance to interact with throughout the years of my intense involvement.