♥ The Most Frustrating Things About Having Chronic Illness

There are so many things about having chronic illness that frustrates me more than anything! Here are some of those things!

Never knowing when the bad moments and flare ups are going to hit

People a lot of times act as if this is how we wanted to be and its completely our faults… Why would we want to be so down and sick all the time? Why wouldn’t we want to live a normal life?

Constant doctors appointments , many new doctors, and lots and lots of stress. It can take the biggest toll on you traveling to and from,dealing with new doctors, and problems. But yet, those of us still being thankful we have the opportunity to get the care we have.

Never knowing for certain that just because you just completed something today, you’ll be able to do it again in the future.

Being doubted by those you love and care about, when you want nothing more than their support.

Having limitations on the things that you can and want to do.

Not being able to bond and do things with your piers because its too exerting and exhausting on your body, it leaves you being singled out and alone.

Those moments where the pain is so debilitating all you can do is lay there and cry, and there is nothing to help the pain.

Having so many dreams and goals but, having a brick wall in the way of you being able to reach them.

Things that could take the average person 1 hour to do, it takes me about 4 hours to do.

  Feeling so alone and out of place even when you’re surrounded by people, because you health and living is so different than others.

Always having a constant bump in your road, just when things start to settle and get better something pops up.

 

Here are some of the things that frustrates me about having a chronic illness, but remember no matter how frustrated you get, stay strong and push on! Don’t let your illness define who you are, take control and live your best life! Love you all!

Stay Beautiful!!

~Cassie

♥ Updated About Me! (Chronic Illness) 2020

Hello Everyone!! So sorry I have been MIA for a while, plan to post an overall update of my health soon!

I get asked a lot about what chronic illnesses I have and a little more about me, so I wanted to make this post so you can get to know me better!

_______________________________________________________________________________________________

What Chronic Illnesses and disorders do I have? (Those that I can remember)

  1.  Ehlers- Danlos Syndrome III
  2.  Fibromyalgia
  3.  Gastroparesis
  4.  Irritable Bowel Syndrome
  5.  Chronic Fatigue Syndrome
  6. hemiplegic migraine
  7. Keratoconus of both eyes
  8. Sinus tachycardia and Inappropriate Sinus Tachycardia
  9. Myoclonic jerking and Tremors of the Nervous System
  10. Pharyngoesophageal dysphagia
  11. Scoliosis
  12. Asthma

 

How long was I having severe problems before I finally got a diagnosis?

It took 10 years of my life being greatly effected, many travels, doctors, and tears to finally get just one of my diagnosis. (I will go into more detail in an upcoming post)

 

How old was I when signs of chronic illnesses started showing up?

I had problems at birth that subsided after a couple years then came back, and some problems in my grade school years with my stomach and joints. When I hit age 11 in middle school is when everything really started to come out and show.

 

I was blessed to be adopted as a baby with such an amazing and loving family to call my own, so most of my Chronic illness’s were unexpected, due to not having much history.

 

I have been fighting chronic illness and pain to the fullest for the past 10 years.

 

I have an extremely high pain tolerance, so when something is wrong it tends to be more serious than what I can feel and think. (Sometimes the pain suprises me and comes full force).

 

What does the “Stay Beautiful” at the end of my post mean?

No matter what we look like, what troubles, and what ever we are going through, We are all beautiful! Stay you, and stay beautiful!

 

 

Thank you all for reading my post! Please like and Join the EDSPAOUTREACH family! I hope you are all doing well and love you tons!

Here is a poll for you guys to pick which chronic illnesses above you want me to get post out about first!

https://docs.google.com/forms/d/e/1FAIpQLSeiVz3xiWq1ArJvcTJ7oFEfGCo-3XS2BlB5U4JazaHm4soLcg/viewform?usp=sf_link

 

Stay safe Everyone! Much love!

Stay Beautiful

~Cassie

 

 

♥ The Pain And Struggle That Comes With Chronic Illness/Pain ♥

The Pain And the Struggle That Comes With Chronic Illness/Pain

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**I own NONE of the photos above and credit to all of the rightful owners**

A Letter To Some Of My Doctors….

Over the years my view on most doctors have changed so much.

Before I saw them all as absolute heroes that have answers and care about each patient so very much… I was beyond wrong.

Don’t get me wrong, there are some good ones, but most doctors I ran into gives me a horrible feeling of worthlessness.

Dear Doctors,

I understand I am one in hundreds of patients, but can you at least Look me in the eyes and show my family and I some respect? You don’t think when I’m sitting there I can’t see your eye rolls or hear the ignorance and judgement in your voice? It’s one thing with me, but when you argue with my family about MY problems that I have. You don’t know crap about me! You don’t see and feel what I go through on a day-to-day basis!

Put yourself in our shoes. What if you had unknown medical problems you were trying to find the answers to? What if it was your son or daughter? Family member? Friend? Constant. Pain. I’m pretty sure you’d be busting your butt trying to find answers. Then they tell you “Oh maybe it’s your depression or anxiety doing it” NO! It’s YOU! Stop trying to blame that! How much hurt and stress you cause me and my family is unbelievable. The people who are supposed to help you with these problems are just adding to them!

You look at me and my problems as if it’s a piece of trash in the street that will eventually blow away and you’ll never see it again.

We wait months and weeks, sometimes YEARS waiting for an appointment through our busy life only to be told were just crazy. That there isn’t something wrong when there obviously is. You think all those scans and labs lie? All of the results and images are just bullcrap? That they’re just showing a mistake over and over again? And that’s only when you decide to tell us about the test and lab results, but when we look into my file it’s completely different from everything you said. I don’t appreciate being lied to.. Be honest and tell me what it honestly says. If it’s not coming up what you tested for okay, lets continue to search for an answer. I come to you for help, NOT obstruction.

Also, understand that we can’t always drop everything in a couple of hours when you want us to and travel over an hour to get there. We have other appointments and other things going on in our lives. Then don’t get mad and ignore us because of that, and refuse to talk to us… How does that make you look? Not very good.

Myself and many others have kept our mouths shut of how we really feel for so long and I just can’t keep it in anymore. I’m tired of being treated like this. I dread going to doctors not knowing what they’re going to come out with or how they’re going to react.

I hope and pray that one day my pain and symptoms are able to be helped enough to the point where I can care and be there for my family like i want to, and be able to enjoy every day like I should. To have some type of relief of knowing whats wrong and not being foreign with my body. But most importantly to me, not having my family and friends worry. Seeing that hurts me beyond any point knowing it’s about me, and i can’t do a dang thing about it.

I’d like to add a couple more points for some medical professionals…

Just because it’s “rare” or “uncommon” DOESN’T mean it’s not possible.

Every patient no matter their diagnosis is going to be unique. They’re not all the same.

We are not just our illnesses and problems. We have an identity. We have a name. Were US!

There are MILLIONS of diagnosis, rare and common. DON’T quit trying after a couple of test. Work with and listen to your patient. Listen to their input, sometimes you might just learn something new.

Kicking us to the curb wont help us, you, or your future patients possibly dealing with similar things.

Be humble.

 

I finally had to let my feeling out, and I hope you never have to go through this and are able to find answers and the best care you can possibly have. You deserve the best. I love you all so much and I’m always thinking of you!

Stay Beautiful

-Cassie

♥ Chronic Illness – Organization and Must Haves♥ Pt 3 **LINKS**

Binders

(1″) 3 Ring Binder $1.79

(1 1/2″) 3 Ring Binder $2.59

(2″) 3 Ring Binder $3.29

(3″) 3 Ring Binder $4.29

(4″) 3 Ring Binder $6.99

Sheet Protectors

(100) Pack $6.79

Binder Divider (With Pockets)

(8) Tab Dividers $4.99

(8) Tab Dividers $2.09

(10 Pack) Business Card Holders $5.69

Appointment Book and Pages

(12 Month) Appointment Book $13.74

(40) Daily Appointment Pages $3.74

Paper Clips, Rubber Bands, Push Pins, Binder Clips

315 PC Assortment Of Clips, Bands, Pins $4.99

 

Part 1 

Part 2 

 

-Stay Beautiful

-Cassie

♥ Chronic Illness – Organization and Must Haves♥ Pt 2

I’m going to give you ideas of how to organize your medical stuff and a fun way to make everyday  appointments a little easier! Also, I own none of the printable pages below

 

3 ring binder or something of your choice

 Clear page coverings to protect your papers

Tab pages to separate your topic and easy custom to flip through and find.

Business card sleeves

Appointment book or pages

♥ Paper Clips

 ♥ Optional ♥

1. Put ALL important info right in the very front!

  1. Contact Numbers
  2.  Medication list
  3. Emergency doctors list
  4. Past medical history (Brief and straight to the point)
  5. Blood type and allergies
  6. Diagnosis
  7. Contact Numbers
  8. Medication list
  9. Emergency doctors list
  10. Past medical history (Brief and straight to the point)
  11. Blood type and allergies
  12. Diagnosis

 

2. Put your tabs in sections depending on your doctors and specialist

3. Fill in your paperwork and files as you would like them and add as needed!

4. Feel free to make you binder your own and very special! Get creative!

Part 1

Part 3

 

-Stay Beautiful

-Cassie

♥ Chronic Illness – Organization and Must Haves♥ Pt 1

I’m going to give you ideas of how to organize your medical stuff and a fun way to make everyday  appointments a little easier! Also, I own none of the printable pages below

♥ Chronic Illness – Organization ♥

 

VERY important Phone numbers and information

Papers to have that makes appointments and everyday life easier and safer!

Items I recommend to have on you at all times

I recommend people with chronic illness or not to carry an updated medical ID, you can never be too safe. Below is the link to create one! It’s Free, printable, and pocket-sized!

 

ALWAYS carry medications you’re prescribed and take them ON TIME ! Your health is the main priority!

For fast and easy access I would make a medical binder..You can grab it and go in case of emergency and it’s easy to spot with all info together.

  • First thing I would do is get a binder, they come in many sizes and colors (What ever is best for you)
  • Second thing, I would do is get sheet protectors and labels!
  • I would mark a spot for each doctor, illness, etc.

Example:

All papers in that section that relates to the doctor.

  • Cardiologist
  • Orthopedic
  • Gastrointestinal
  • neurological …. etc.

Put all your important documents in page covers! It’s easier to get to and it keeps them safe. (Free Prints and downloads below!)

  • Medical cards and ID
  • Copies of doctor papers that have important info
  • Medication list
  • Allergy List
  • Cardiac log
  • Vaccines
  • Reasons for recent hospital visits
  • Any recent falls or injury’s / How it happened
  • Emergency and medical contact list –
  • Vital info Weight, Height, Blood Type etc..

( Everyone is different so you may not need much of the fill ins that’s listed )

 

Emergency Contact and Medical Form: 

http://www.agis.com/SqlFileResource.axd?id=33&resource=pdf

Emergency contacts shouldn’t be limited to just direct family members, but….

  • Home
  • Work
  • Family members work place (If they can’t get ahold of them personally)
  • School phone numbers and contacts
  • Contacts of people who will take on certain responsibilities; Care of pets and children, house, etc.

Make sure you have local help contact information

  • *Emergency help line (Example; 911)*
  • Local Police Department *For non-emergencies
  • Local Fire Department *For non-emergencies
  • Local EMS
  • Poison Control
  • Crisis Hot Line
  • Doctors
  • Dentist
  • Pharmacy
  • Health insurance plan and policy number

**Also, here’s a list of national emergency numbers you should keep at the ready:**

National Suicide Prevention and Crisis Lifeline        – (800) 273-TALK (8255)

Drugs and Alcohol Treatment Referral                       – (800) 662 HELP (4357)

HIV/AIDS                                                                             – (800) CDC-INFO / (800) 232-4636

Domestic Violence                                                             – (800) 799-SAFE (7233

National Sexual Assault Hotline                                     – (800) 656-HOPE (4673)

American Red Cross                                                          – (800) RED CROSS / (800) 733-2767

Poison Control Center                                                       – (800) 222-1222

 

*Emergency number printable list for every state! United States!*

http://www.childsafetyexperts.com/emergency-numbers/

Medication List:

http://www.agis.com/SqlFileResource.axd?id=36&resource=pdf

 

♥ Tips for Safe Medication Use and Storage

http://www.agis.com/Document/28/tips-for-safe-medication-use-and-storage.aspx

Get so many FREE downloads of documents to include to your portfolio!

https://www.freeprintablemedicalforms.com/category/charts     (Love this site!!)

 

*I do NOT own these sites, credit to owners!*

Part 2

Part 3

-Stay Beautiful!

-Cassie

♥ (Chronic Illness) Common Types of Migraine Headaches and Symptoms In Children

Presentation
courtesy of Diamond Headache Clinic

 

 

Here is a beautiful presentation done by Dr. Merle Diamond at the Diamond Headache Clinic!

I think it’s absolutely amazing what you are doing for these children experiencing such pain from headaches and Migraines!

I would like to say a thank you to everyone involved in this post and project as it means so much to me that i was able to help! Keep up the amazing work, awareness, and information about Headaches and Migraines in children!
-Stay Beautiful! ♥

Have a happy, blessed, and safe holiday!

-Cassie