Endometriosis Awareness Month 3/1/24
March is endometriosis awareness month. A in-depth testimony of the devastating impact of endometriosis and the medical bias experienced. No woman should feel alone or made to think they are crazy because a doctor can’t treat them properly.
Today is March 1st. This is recognized as the start of endometriosis awareness month.
As blessed as we are for a month of awareness this should not be the only time we are aware of the devastating effects of endometriosis.
Endometriosis affects millions of women and their day to day lives. This disease is crippling and debilitating. Many women are taken to their knees literally from the pain caused by this disease.
Endo has been shown to have the same amount if not greater than a heart attack. Now imagine having the pain of a heart attack but it never goes away. From the moment you wake up to the minute you close your eyes pain is dictating every second of your day.
The pain is overwhelming.
Endometriosis affects not only the reproductive system but is a whole body disease. Endometriosis tissue has been found on every organ in the body including the brain.
Many women will suffer from devastating infertility, multiple surgeries, GI issues (constipation, vomiting, food intolerance, etc), neurological symptoms (migraines, double vision and nerve pain), horrific periods, ovulation and PMS. The list of symptoms is so dense and doesn’t even cover the emotional distress caused.
1 in 9 women suffer in silence from endo with a minimum of 7-10 years before being properly diagnosed. There are no treatments that help endo and there is not a cure.
We must do better as a society to stop minimizing and stereotyping women who are suffering from this brutal disease.
Endo sufferers are also plagued with other diseases, many autoimmune due to the harsh disruption of the nervous system and the wear and tear on the body.
This is unacceptable medical treatment of women let alone not good enough for the generation of little girls who unfortunately will suffer with endo. We must do better for them. We must find a cure. We will be heard.
I will not sit in silence!!
Endometriosis is not just a “bad” period.
Revolution Era 2024
Setting goals is crucial for personal growth and motivation. They provide direction and purpose, guiding us towards success. It's important to be specific and realistic, setting deadlines and breaking goals into smaller tasks. The journey towards our goals is just as important as the destination, fostering personal growth and resilience. Regularly reviewing and adapting goals ensures they remain relevant. Let's embrace goal-setting for a fulfilling and successful life.
Happy New year beautiful souls! I hope everyone had an amazing Christmas and New Years!
Since I was a little girl my family has made New Year’s resolutions a huge deal in my family.
We write them all down and go one by one talking about why we picked this goal and what it means to us.
I never believed in starting the resolutions in January but either before Christmas or in February to avoid the new year burn out. It is not for everyone but it is simply what helps me set a good and healthy routine.
This year I started my resolutions a week before the new year itself. I have to remind myself to give myself grace as everyday is not the same and life does happen.
REMINDER- just because you fall short one day doesn’t mean you have failed.
I heard this quote “Go to sleep and be ready for tomorrow as it’s a new day that has never been touched before.”
It’s so inspiring to me as just because your day didn’t go how you wanted it doesn’t mean tomorrow will go the same. Everyday is what you make it! So make the best of it!
I would love to bring you along my journey this year in my Revolution Era of 2024! A Transformation of the mind, body, spirit, and financial wellness of my life.
Here are my Goals I have set this year for myself!
Spiritual Goals ~
▫️Finish 6-week Bible study
▫️5 minute prayer and praise journaling a day
Physical Goals ~
♦️ Try out Tracking Macros
♦️ Increase water intake (3 full bottles a day)
♦️ Work out 2 times a week for 6 weeks then up to 3 times a week for 6 weeks
Health Goals ~
⚕️Prioritize Sleep Routine
⚕️Heal my gut health
⚕️Stay consistent with vitamins for 3 months
Financial Goals ~
💰By June have $3,000 in Savings account
💰 By March have Care Credit Card down to $1,500 owed
💰 Put $50 into emergency fund every paycheck
Work Goals ~
📎 Invest in a specialty
📎 Start a side hustle
Self Improvement Goals ~
🫶🏼Try a new event/class this year
🫶🏼 Spend 10 minutes outside a day
🫶🏼 Read a book
🫶🏼 Become fluent in correct typing
🫶🏼 Post one blog post a month
🫶🏼 Achieve my 3rd degree Black Belt
🫶🏼 Go on a solo trip
🫶🏼 Treat my anxiety and PTSD
Big Long Term Goals ~
☑️ Move into an apartment
☑️ Further Education Training
☑️ Pay off all my medical debt
☑️ Work towards a new car
These goals have kept me motivated and focused on growth even through the days when everything may feel too hard.
I challenge you to make your goals and set yourself up for success this year! Even when our bodies give out and our days are harder than most, I want you to look at these goals.
Remind yourself you are more capable than you could ever think. You can do anything you set your mind to. No matter how hard things may get, remember to give yourself grace and be kind to yourself.
Every accomplishment no matter how small is still a huge milestone in creating the life you eat for yourself.
You’re challenge ~
I challenge you to write 3 goals. Pick one goal and stay consistent with that goal for 1 month. Write it down, track your progress and be gracious with yourself.
👇🏻Comment below! 👇🏻
What is your goal and how are you going to stay consistent?
Goal Setting With Chronic Illness
New Year’s resolutions are in season. It’s hard to set habits but tis’ the season for positive change. For spoonies it can be hard for day to day task but we don’t have to live in a on going negative cycle in our illness. 2024 is our year for prosperity and here is a guide to help set up a productive year!
New year…Same Body
The new year can be hard for us spoonies. We see all the goal setting videos and the videos on how to lose weight to become your best self.
Some of these videos can make us feel very low about ourselves like we aren’t doing enough or we aren’t working hard enough.
Maybe we set goals that aren’t realistic for our bodies to fit the social pressure image. We don’t have the “body” the influencers and social media shows us. We can get into a negative spiral about ourselves and our bodies.
We don’t have to fit the narrative of the world. So how do we go into the new year without making it already feel impossible and not worth setting any goals?
Meet yourself where you are now
What I mean by this is to take note of how your body was this year. How many times did we have a flare? How many times were we Sick?
Now that we took account, what is one way can we improve our health? Is that taking a vitamin daily you’ve been putting off? Maybe it is as simple as setting a better medication regimen.
Set simple short and long term goals
When setting short term goals make sure this is something you can achieve within a couple weeks/months. Don’t make complex but something simple that is obtainable
When setting long term goals, have it follow suit to your short term goals. This allows for baby steps to the long term goal making it easier to achieve while fulfilling short term goals in the process
Separate goals into sections
For myself I do sections for short term, long term goals for my main objectives
For example I separate them out into categories.
Self improvement Goals
Mental health Goals
Financial Goals
Physical Goals
Spiritual Goals
Relationship Goals
I also write a couple Goals as bonus ones if I achieve is just a plus
Remember these goals are for your own growth. Stepping outside comfort zones and stepping into better self discovery.
You are going to make great strides and achieve some goals and others you might not, which is okay.
Give yourself grace. Give yourself some credit for even stepping into a new year having made it through the past year.
This isn’t a race or competition. Be kind to yourself and your body.
Having chronic illness is one of the most difficult things to live with and live through. However, we are still here and our impact and time here on the earth matters!
You got this! You can do it. We are in this together!
This is our Healing Era 2023
Xoxo beautiful souls
Ræ
Life Update Nov 23’
Honestly…
I don’t know what the hell I'm doing anymore. I’m in a weird limbo of trying to fix and remove all these toxins from my life.
Removing as much dairy, gluten and artificial sugars from my day to day. I am trying to get back into juicing and learning how to make anti-inflammatory foods.
I am trying to remember to take vitamins which I fail at a lot like remembering to take my daily medications. (Not like I’ve been doing this for years now) you’d think it wouldn’t be so hard.
I have been doing somatic work to release trapped trauma (medical, physical and emotional) from my body. It has helped with some bloating and pelvic nerve pain. I hope a lot and I mean a lot of tension.
I’m trying to do all these things while falling apart at the same time. My body feels incredibly weak. Even though I’ve made it through more than a month of not missing work, I had to call out today.
Upper respiratory infection that I was fighting off for a couple days took me out. So the circle begins again. The vicious cycle I’m trying so hard to get out of.
The past couple months I’ve had kidney infections, stones, uti, stomach issues, multiple aura migraine attacks and now this. The odds feel stacked up against me. On a good note I had a brain test done at my neurologist to see if I have ADHD which may be a cause to a lot of my anxiety. I feel my brain going 10000000 miles per hour all the time.
As positive as I want to be I just feel tired and out of fight. I’m just so tired and done.
I am having to miss out on my third degree Black Belt mid midterm testing which really sucks. I also can’t compete in the tournament that I wanted to as I named it. Just a bunch of one thing after another.
I recently saw a pain management doctor and insurance won’t let me get scans on my back until I’ve been with him for 6 weeks. He wants to start a new medication that’s long acting to help with my pain and do injections to ease the inflammation. Only thing is if I can’t get in before the new year for these scans I won’t be able to afford it. Searching for new health insurance so I can get better treatment options is also a hassle as I need it before April. He believes I have a bulging disc(s) and saw a nodule on my left hip that I had surgery on from old scans about a year ago.
Like I said one thing after another.
I’m trying to be the best role model for the kiddos I work with and live representing God and his love.
I just feel like I am failing at so much and my hard work is never noticed. People like to focus on the things I can’t do instead of the things I have and are doing.
This months checklist-
See endocrinology
See urology
Get into PT
Find a budget that gives me flexibility
The cycle must continue until I can find a way to break it.
Work, push through, pay my bills, spend days off at doctors, spend the time I have off sleeping to rest, and make it to Thanksgiving break healthy.
We got this.
All my love beautiful souls
Xoxo
Ræ
A Series tHE eMERGENCY ROOM
Being chronically ill and the ER is bound to happen. Lately it seems like that is all I have been doing. Unfortunately, my health has taken a hit but I have learned things that hopefully can help you next time you’re faced with having to make a decision to go to the ER or not.
The Dreaded Emergency Room
The Series
What is the purpose of the Emergency Room Doctors?
First they want to make sure you are not dying or in any danger zones. That is their first measure when assessing you. They then will take the symptoms you give them and treat them to the best of their ability.If blood tests, scans and imminent death are clear at this point they are not going to do any other treatment. Why is this? Their job is to make sure you are not dying, you are staying alive and they get to their next patient.Most of the time if they don’t admit you to the hospital they will refer you to your Primary Care physician and discharge you. Unfortunately, they aren’t going to try and figure out what’s wrong even when they know you aren’t okay. They weren’t trained to keep you in the hospital until they figured it out like we see on the TV shows.It is incredibly frustrating and honestly everything they tell you, you have to take with a grain of salt. It will drive you insane if you don’t. Like I said they were trained to treat the symptoms and then send you home with a referral. That is their game plan and get the room open for the next patient.
It is called Triage
As I have come to understand this my frustration with the system has become a little less. It is sad and hard to come to grips with but it helps to understand a system when you are coming into it. When you’re in pain your mind is not 100% so have a game plan of your own that a partner/family can advocate for, so you can rest instead of feeling like you have to fight.
I hope this was able to give some clarity to E.R visits, they will treat your symptoms in some form (IV fluids, meds, scans, etc.), might admit you, but most likely will send you home after your symptoms are controlled.
Much love beautiful souls XO Rae
Life Update Part 2
Hey it’s me again,
I’m sorry for the inactivity lately. I have been so sick and the thought of doing anything really has given me anxiety. I’m scared to do anything because I am down for days after.
I have been to every single doctor this month. Of course my blood work is “normal” so no one can tell me what’s going on. There are a few things off and that shows in the blood.
I am getting more blood work done and also meeting with my neuro doctor this month. I did the 72hr EEG which was complete hell. I did have a couple episodes while hooked up. That was a sleepless 3 days that most certainly will never do again.
I am getting so tired of fighting the fight right now. My body feels like it is slowly dying. I am sick more often than not. I am having to make adjustments to my life and how I want to live it. My body is giving up on me and I truly am in so much pain emotionally, physically and mentally.
I do not have any energy and in my spare time I’m trying to sneak in a nap. Everyday has been a struggle lately. I know it will get better but right now it’s hard to even get out of bed.
I hope you all are doing okay today. I will back with more posts this coming week.
XoXo
Rae
Pelvic Floor Therapy
Pelvic floor therapy can be incredibly beneficial to help improve pain. Many women in their lives will deal with pelvic pain or pelvic floor dysfunction. Some men as well may suffer from this as well. Pelvic floor therapy is one of the top factors in pain reduction for many women.
Physical therapy is used to help repair muscles by teaching them new habits or teaching the muscles to relax. Physical Therapy is for many more rehabilitation purposes. It is very helpful to have a shorter recovery. It has been shown to improve the recovery process after a surgery.
The difference between normal PT is pelvic floor therapy is an internal therapy done with trigger point manual pressure to release the tension within the muscles. This is used to also help realign the pelvis as well as reduce pain and work to improve pelvic pain. Many of us with endo unfortunately will deal with pelvic pain or pelvic floor dysfunction. This PT can drastically change your life for the better.
Now here is what to know when starting the journey to pelvic floor therapy -
Make sure you read reviews and search up multiple in your area. Read about them and see what clients of theirs have said over the years. Find one that will best fit your needs. It is important you are going to feel comfortable walking into the appointment.
It is very uncomfortable at first. You have a stranger using their fingers internally to help release pain. The pelvic floor muscles can only be reached internally. They sit inside of the pelvic bone which is why it can be so hard to release tension. A good physical therapist is going to walk you through everything first and go from there.
It can be painful at times as they find muscles that can be pretty angry and inflamed. This is okay and over time the muscles will release without much pressure until they have learned to just relax in general.
They most likely will give you dilators to use at home. These are plastic simulators of different sizes to help stretch the muscles. This is just like stretching a quad muscle or shoulder. There is nothing dirty about it as it will help you. If you experience pain after sex with your partner, talk with your therapist about a specialized plan for you. The goal is to have a higher functioning pelvic floor instead of low functioning.
You may experience some smaller flare ups for the first few times. Take a breath, take some medication beforehand and plan your day accordingly. It will get better as your muscles become less traumatized by all the pain they feel daily.
Pelvic floor therapy can also help with being intimate with your partner. As it shouldn’t hurt to build an intimate relationship with your partner. Talk with your PT to see what you can do at home to make the experience better for you.
I am a big believer in this therapy as it has given me freedom back from clicky hips, piriformis syndrome and nerve damage. Most GYNO will give you a referral to a pelvic floor PT.
I wish you the absolute best beautiful souls
XO Rae
Chronic fatigue
Sitting in the bath looking at the reflection in the water. Do I even recognize myself.
Anyone else feels the burden of knowing you have to get up, but your body is physically fighting you. It’s so fatigued it’s hard to breathe. It’s hard to do anything at all.
Feels like existing is hard enough.
Chronic fatigue is not for the weak. It is defined by the Mayo Clinic as, “Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder.
It causes extreme fatigue that lasts for at least six months. Symptoms worsen with physical or mental activity but don't fully improve with rest.”
Chronic fatigue is a whole body problem. We all know without sleep the more flares or our immune system gets even weaker than it already is.
Many people that have chronic fatigue syndrome also suffer from a disease or inflammatory disease. If the body is always in pain it doesn’t have time to rest.
The body can try to recover through the night ,but being in pain around the clock makes it very hard for the body to recover.
Chronic fatigue syndrome impacts “2.5 million Americans” (National Institute of Health). Every 3 in 4 Women with endometriosis suffer from chronic fatigue. (Medical News Today).
Endometriosis affects the body in a multitude of ways. This is one of the most common symptoms to look out for. You may feel this as you get closer to your period or are on your period. I experienced this during ovulation mostly.
There are ways to try and reduce this symptom by -
1. Trying to go to bed between a set hour
2. Waking up at the same time- I usually wake up between 9-9:45am
3. Reducing caffeine after 3pm
Know that if you suffer from this you are not alone.
Chronic Pain
In bed with endometriosis in pain.
Chronic pain is not properly addressed enough.chronic pain according to the dictionary is defined as, “ Persistent pain that lasts weeks to years. The pain may be caused by inflammation or dysfunctional nerves.” You will find in the treatment section that treatment may help, but this can not be cured.
This isn’t a syndrome that can be taken away, and many of us are too familiar with the life altering daily pain. The pain can be so overwhelming that it’s easier to stay in bed than try to move.
Mobility Devices-
Chronic pain changes the way we live our life.
Chronic pain is not just a back ache or some swelling here and there. Just like endometriosis it is a thief of life.
With that said, we don’t just let our life run past us. We do our best to catch ever fleeting moment we can in life despite the internal screams of pain.
This is how I am working on helping my chronic pain symptoms.
1. I have started cutting our dairy as much as I can. I find this has help the pressure in my stomach. Also helps my gut to where it doesn’t trigger an endometriosis flare.
2. I have started to see a fascia massage therapist every 2 weeks to work on trigger point holding pain.
3. I have begun making movement and stretching apart of my daily routine. It has help tremendously in loosening tight muscles. This has helped me move better in the morning.
4. I started just recently taking melatonin. I feel it has relaxed me more in my sleep. I am not clenching my jaw or squeezing my toes into my feet. Getting to shut off as much pain I can in my sleep.
5. I have really upped my water intake. It’s helped with my body feeling refreshed.
6. Nerve blocks in my neck have helped my migraines. Also, have cut down a small bit on my neck and shoulder pains.
I hope these help you find what can work best for you. Stay safe and kind to yourself.
Xo Rae
Life Update Part 1
Hospital with partner. Holding hands.
Welcome to a series of updates about my day to day life dealing with endometriosis. I’m so glad you are here and hopefully don’t feel alone in your journey.
San Antonio Selfie Musume
So far this month I have turned 23, gone to more doctors than I can count. Had strep get into my chest, sent me to the ER, and made me miss a full week of work.
That was all after a beautiful vacation in Mexico where I was just blessed to be in the presence of God's creation.
Mix in there more prescriptions, having to hunt down my medication because they gave it to someone that wasn’t me. Which means I’ve been off estrogen for almost a month.
Talk about some damn hot flashes! Plus in summer time is bull crap!
I am having to go see an endocrinologist to see why my body doesn’t seem to rid my body of things it should. I then have to go to a surgeon to see if I have to get my gallbladder out. I am trying to plan out my next surgery for my endometriosis to get that and adhesions removed. They want to try to transplant umbilical tissue to see if that helps heal the areas where adhesions seem to grow.
I am also getting seen by a specialist to see if I have endometriosis in my chest cavity which can be why I get chest pains and it can get so inflamed.
I am on a quest to see if I have fybro as my momma has that. I have started to experience symptoms. Dealing with chronic fatigue syndrome makes all of this so incredibly difficult as I barely get out of bed. It’s hard enough these days to get through work.
I feel as though I am just getting worse these days. I miss the good days. I know they will come again. Right now I am just trying to stay afloat.
The Body is a Language
Hands in flowers
The body is a very complex and mesmerizing artwork. Every single cell is unique to the human being it captivates. We hear our body speak with us when it needs food, water or sleep.
Being chronically Ill makes this louder but we often ignore it. The pain, fatigue, and nausea. The overwhelming sensation of pain and guilt.
Are body speaks its own language letting us know every little thing that is right and wrong. If we listen to our intuition we can start to understand the process. We will be able to catch the warning signs before a flare or before we get sick.
This helps minimize the impact as we are prepared to go to battle with all the essentials we know our body will need.
Don’t ever let someone tell you, your body is wrong. Only you can hear your body and speak up for what it needs.
Stay strong warriors 💛
Grief
Grandpa and Granddaughter
I grieve for the person I once was. The one who woke up without pain or wondering how the day was going to end. The smile that was real and not forced.
The days I could eat without being sick or having pain. The person I was before hospitals, doctors and special diets filled my day plans.
Moving my body free and feeling alive. Where has that gone? I know it’s still there. Things are just different now.
Time seems to stop in my mind but races by in real life. The small things have become my pleasures.
Medicine fills my bags and guilt fills my head. My therapist says it’s not my fault but how am I to say it’s not when my own body is betraying me.
If you feel this way just know I do too. It’s okay, you’re not alone. It’s okay to have bad and good days. If today is bad know in days to come they will be good again.
Rest easy beautiful souls
Who Am I Without You?
Girl walking in the street
Girl Laying in Grass
I caught myself in the clouds about my life and how I feel guilty for making a distinction between who I am and what my chronic illness is. Am I a fraud for saying I am a person in the midst of my struggles with health? No of course not! You are allowed to remember you through this.
Who am I without you?
Have you ever caught yourself asking yourself that question? Who you are in the midst of illness. What your favorite color is or how pain has changed you?
You are not just your disease, you are SO much more than your disease. Your disease does not define who you are as a person or what your worth is.
You are SEEN. Something I didn’t know I needed to hear this week that has stuck with me, “you can’t control your body.” It was like a wave of relief filled the room as I realized this my fault but my body's fault. This has NOTHING to do with but everything to do with the disease.
Who are you?
RESILIENT
BEAUTIFUL
STRONG
KIND
EMPATHETIC
BRAVE
A PERSON
You are a human being that is going through a battle day in and day out. You are NOT to blame for missing work, needing new or more medication, gaining a few pounds or not being able to get pregnant. It is the disease and nothing you have done means you deserve any of this.
I want you to look in the mirror this week and say, “I see you.”
Relearning
How do you relearn and reprogram your entire body after trauma? Where do you start and what does that mean? Come read my post and connect with other to see how you can help take charge of healing your body!
When a football player injures their knee they get surgery. After surgery they have to learn how to use their leg again, including putting weight on it, reminding the muscles of their purpose again. Trauma to the body rewires the brain into finding a detour to help keep the body as whole.
Being chronically ill changes our brain chemistry, our brains are in a constant battle trying to find different pathways running from the pain. We have to relearn how to reprogram our bodies to remind our brains they know how to work correctly.
It was hard for me to understand this as I went through surgery after surgery. I’m sure you feel the same way, finding yourself running in circles. I finally stopped trying to figure things out myself and sought help.
These two things that have helped make my journey more bearable -
See a therapist
Go to Pelvic Floor Therapy
Seeing my therapist has helped me to come to grips with the fact I am dealing with a disease so brutal. It took a year for me to understand that I am going to make it through this. I healed a lot and still have a lot of healing to do.
I encourage you to see a therapist or talk to a trusted person about what is going on in your beautiful head.
Second, pelvic floor therapy changed my life. I was in so much pain having to use diazepam vaginal suppositories to calm the nerves down. I had sharp pain and pelvic exams were not going to happen. I went through the steps and made amazing progress through my doctor's help. I still have pain but now I have the knowledge to know what to do and how to do it.
(Come back next week for my pelvic floor therapy blog)
I recommend seeing what therapists mentally and physically are in your area. These two things can make a difference for you. It might be mentally hard to do pelvic physical therapy as a SA survivor. I know that feeling and it was really hard to go. After a while I got comfortable and 4 years later I still see her.
Give yourself some slack. Your body is wounded and trying to heal. We have to reteach our bodies and give them pathways to heal but taking and following the steps.
Much love beautiful souls. Comment down below how long it took for your diagnosis!
Giving Grace
Hello beautiful souls ,
Today I want to talk about grace. You know the thing we don’t give ourselves enough. What we deprive ourselves of because we feel like a burden for having to ask for help, days off, modified work, and feel like we can never be enough for ourselves.
We have a debilitating disease that isn’t seen as a severe enough disease that we should talk about or even complain about. A disease that has taken so much to where we are left to give ourselves so little. In a whirlwind all the time trying to balance our work, home life and feeling like a human being.
When is the last time you gave yourself a pat on the back for making it through a difficult day? The days that seem so bleak and crippling but you made it through and managed to even smile once. The days where you cried and felt less than a human being. The day where you barely rolled over in bed. The day where you pushed yourself, went to work and worked your ass off being the top worker smiling at everyone. Treating others with grace and understanding.
Yes, those days.. Did you tell yourself, “ I am proud of you for making it through today.” When was the last time you said something positive and uplifting to yourself?
I know for me it’s been awhile that I have truly looked at myself and felt proud. I have been battling the feelings of being a burden not able to work hard enough or feel like I need to overcompensate. Feeling like an awful partner to my boyfriend because I can’t give him what I feel he should have. Feeling like a bad person because I wasn’t able to show up for my family or friends.
Today I read about grace in the Bible. That not only does our savior give us grace but we need to give ourselves grace. We are on an uphill battle daily and yet here we are still waking up and going to war.
Grace something we give to everyone around us. What is grace? How do you show up for yourself?
Grace is, “ being kind to yourself as you would be to others.” Or what I say,
“ giving yourself a damn break”. You are worthy and more than enough. Be kind to yourself. Give yourself a hug and tell yourself it’s okay to fall apart and have a bad day, week, month(s), or year(s). You are STILL here. You are STILL fighting.
No matter what you face you show up day in and day out. Talk to yourself like you would talk to a friend or family member going through what you are.
Advocate For Yourself
Advocate for YOU
How do you advocate for yourself? So many doctors, nurses, administrative, medical assistants, etc.
I have to tell my story over and over and over…. It feels like I can be a record. Sometimes I feel like I am getting interrogated. If I say one word wrong that I didn’t tell the other nurse or doctor, that I will be labeled as a drug seeker or hypochondriac.
Now you’re telling me I need to advocate for myself after dealing with all my past medical trauma and repeating myself like my life depends on it?
Well… Yes I am.
I know this must be so hard and emotional for you and it is every time I have to do it as well. You never know the reaction a doctor or nurse may have. All I do know is I am tired of being silent and letting them do whatever they want.
I Stopped waiting for answers and got them myself from the doctors and nurses. I want to understand what is going on with my body and I want to know it ALL.
These are some tips I picked up along the way through personal experience and help from others that are going through the same walk of this disease.
1. Talk and talk a lot
What I mean by this is to talk about why you are there. The diseases you have or other health issues that may impact your quality of care. You must be transparent about everything that is going on so that their treatment plan is not one narrow plan of one size fits all.
Many E.Rs and doctors in primary care/specialties have a treatment plan all ready to go that is very standardized. This helps them color outside the lines of helping you in the way you really need to be helped. Getting medical treatment is like a game of catch. Sometimes they catch the ball but other times they have butterfingers and need some extra assistance.
2. Have Medical Records
Before I go anywhere I try to have my medical records put together. In writing or electronically. This will back up what you have told the nurses or doctors about your medical history, which allows them some insight on what treatment that has worked and which ones have not. Again, this helps them to customize a medical treatment plan that fits you and not everyone else.
Medical records are usually easily accessed through mychart applications like healow, passport etc. Many doctors have different apps where you can access what you need or email with them directly. I particularly enjoy TexasHealth because all their facilities are connected which means all they have to do is look up my name, and boom all my records are there to see.
Take some time to collect your medical records and either print them out or place them in a file on your phone/computer for easy access.
3. Ask Questions
Doctors have a foreign language with acronyms that could for all we know mean Taco Tuesday. I have never heard the ABC’s used all at once until I was taken to my first hospital at 16. The past couple of years I have picked up on a few but as we know or don’t know, asking about the meaning is probably the better choice.
I listened to a video once where a woman who was a nurse said to ask how and what evidence led to the doctor's diagnosis. The more you ask the more you learn. Doctors usually don’t get many patients that ask questions like this. Remember, if you don’t understand their explanation, ASK.
4. Second Opinion Please!
You are ENTITLED to a second opinion if you are not feeling sure that the doctor you currently have has given you the proper treatment. This doesn’t have to be said in a negative fashion as sometimes you just are not relating with the doctor.
I know many times I haven’t expressed something because I felt like the doctor was too busy for me or just honestly didn’t give a shit. Know your rights as a patient and use them as they are there to protect you and your health.
5. Medication on the house
This is always the one that I get so anxious asking about. “Can I please get something for my pain?” I know these are fighting words right? It can get sticky and in my case doctors will bullcrap me with tylenol. Yes I know, they think tylenol is going to help with endometriosis pain. Laughable.
Speaking up and letting them know what works and what doesn’t advocates for yourself in more ways than one. They now know what you are not going to take and it limits their odd substitutions for pain medication. This can speed up the process as they aren’t blindly trying to figure out what will help you.
Advocate for yourself. Let in someone that can advocate for you as well. Having a support system with you is helpful as they can help you speak to the doctor and not accept anything less than being treated like a person.
I really hope this helps you on your journey.
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Comment down below other ways you have advocated for yourself or someone else!
A Balancing Act
Life and Health Balance
“Life isn’t about getting or having, it’s about giving and being.”
Unknown
How do you balance work and home life?
1. I make a schedule for the week and then separate it out by the days of the week. I write down the times to get certain things done allowing time for family.
2. I do my best to leave work at the door when I come home. I try not to let it take up too much of my talking points as there are other things to talk about.
3. I don’t give out every detail of my private life to my co-workers. We are close but not to the point they know intimate details of my personal life or relationships.
Setting boundaries for yourself and others around you will help to find the best balance for your balance.
Trauma One
It all begins with an idea.
Medical Trauma is a very big box to unpack. Not only can our illnesses bring us medical trauma but our experiences we have with doctors, nurses or radiologists.
Medical Trauma doesn’t necessarily mean you had bad doctors or experience, but is the experience you had physically with a medical condition while there. However, it can be because of a bad doctor or nurse that made you feel less than human or treated you roughly during a time of need. This is a very complex trauma that causes anxiety when having to receive treatment from a medical professional.
I personally have to deal with medical trauma from bad nurses and doctors based on how they made me feel as a patient. I was called a lier and was left in a room crying in pain for 6 hours before making me sit in the waiting room to be picked up. I have been dismissed time and time again and told that my symptoms are “in my head” or just “anxiety”. Having a nurse detach my numbing medication after surgery and place my catheter in incorrectly. A hospital can be very embarrassing as they take clothes off or don’t give any privacy.
You are not alone in your journey to feeling safe when seeking medical treatment, or how to ask for what you need.
I strongly encourage anyone that is dealing with medical trauma to not ignore it. Getting help by either seeing a medical trauma therapist, counselor, priest or virtual therapy like (better help therapy). This will help give you coping skills when dealing with anxieties when dealing with future medical experiences.
Bring a safe person to your appointments. This will help ground you and make you feel protected while being in a medical facility.
Ask the doctor to explain things to you. Ask them how this procedure is done and to walk you through each step as they do it. Asking them to verbalize it is very important for your piece of mind during any exams.
Do not be afraid of asking for anxiety medication to help stop the ‘fight or flight’ response. You can also take Benadryl as it also calms the body. (Do not drive).
You are NOT alone in this journey. This community is here for you.
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Love you!
Flare Remedies
It all begins with an idea.
Hello beautiful souls,
First I want to say thank you for supporting me and subscribing for more tips on how to best cope with Endo and chronic illness. You are WORTH it, you are BEAUTIFUL and you are RESILIENT.
During a flare of endo it can be incredibly discouraging and emotionally draining to go through another flare. Maybe you felt like things were getting manageable or this is just the cherry on top of a month where you feel like you just can’t win. No matter the circumstances here are some methods to make the flare maybe just a little less miserable.
Begin Nesting -
Yes I know that’s a term for new mothers that go balls to the walls getting ready for there new child. Well, maybe we can take some pointers from them to make use more comfortable through our flare ups. Since flares can last hours to days.
You will want to get everything you might need to make your space comfortable while you are flaring. Medication, pillows, blankets, heating pad, crackers and something to keep your hydrated.
Find a place to make yourself as comfortable as possible where you can get rest. Bedroom, couch or guest room. Wherever you feel the most comfortable and can have space to yourself in a low stress environment. Most importantly where you feel safe and comforted.
2. Meds for the win -
Flares are no joke and we ALL know medication will be a need to help keep us out of the Hospital.
Make sure you have alarms set for the hours you’ll need to take your medication. It is very important to take your medication for pain as directed to stay on top of the pain the best you can.
Make sure to have the medication by you so you can reach it without having to get up. It can be hard to walk during this time so limiting movement until pain is manageable again is optimal.
If you are needing nausea medication or other prescriptions make sure to contact your doctor and have a safe person pick the prescriptions up for you.
3. Make arrangements for work or events for the following day.
trust me I know it can be really embarrassing to have to ask off work or for modifications because of a flare. In my experience it is best to let them know way ahead of time so they can have a game plan for the following day.
Don’t force yourself to attend events unless it is absolutely mandatory. Move around what you can and rest your body.
4. Inform your doctor.
inform your doctor of any new or worsening symptoms during your flare. They may be able to provide new ways to manage pain you did not know about. It is important to keep them up to date so they can document this in your chart. This helps with follow up appointments and for better communication. (You’re not being annoying I promise!)
5. Let your safe person(s) know you are in the middle of a flare.
People care for you and want to make sure you are okay. If you’re like me I get extremely fatigued when flaring. I will sleep for hours at a time which can really be concerning for others. You want to not only let people know you’re flaring for check ins but also emotional support. My boyfriend and mom know if I’m flaring at any time I might need assistance or be taken to the ER in severe cases.
I hope this guide can be helpful especially for those who have been recently diagnosed with endometriosis. If you want to read more about endo, connect with the community and follow my journey in life, make sure to subscribe!
I hope you feel better!